| Original Full Text | ADDRESSING INEQUITIES IN THE DEATH AND DYING EXPERIENCE THROUGH MULTIDISCIPLINARY EDUCATION AND TRAINING By AUTUMN ELIZABETH DECKER A dissertation submitted in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY WASHINGTON STATE UNIVERSITY Department of Human Development MAY 2024 © Copyright by AUTUMN ELIZABTH DECKER, 2024 All Rights Reserved © Copyright by AUTUMN ELIZABETH DECKER, 2024 All Rights Reserved ii To the Faculty of Washington State University: The members of the Committee appointed to examine the dissertation of AUTUMN ELIZABETH DECKER find it satisfactory and recommend that it be accepted. Raven Weaver, Ph.D., Chair Cory Bolkan, Ph.D. Brittany Cooper, Ph.D. Tracy Klein, Ph.D. iii ACKNOWLEDGMENT Funding: This dissertation was supported by two Washington State University grants; the WSU-Vancouver Mini-Grant ($5,000) and the Alberta Hill Academic Excellence Award ($3,060) Public Data Sources: This dissertation used publicly available data from the National Health and Aging Trends Study, a nationally representative sample of Medicare beneficiaries aged 65+ that is supported by the National Institute on Aging and the Assistant Secretary for Planning and Evaluation. Personal: Where do I even begin? This dissertation would not have been possible without the support of many people in my life. First and foremost, to Dr. Raven Weaver, your support and guidance throughout these past four years have been instrumental in my development as a scholar, instructor, and human. Being your first student has been an honor and a privilege, and I am so thankful to you. I cannot say enough about what you have given to ensure my success in this program and beyond – from the bottom of my heart, thank you. Thank you to Drs Cory Bolkan, Brittany Cooper, and Tracy Klein for your expertise and for serving on my committee. I have learned so much from all of you and could not have done this without your support. To my partner, Jake, without you, this would not have happened. You have made these past four years not only possible but fun. From daily support, like doing all the dishes and laundry, to planning outdoor pursuits to keep me sane, your steadfast companionship has been instrumental to my accomplishments at WSU. You have held me while I cried and celebrated me when I have succeeded. Growing together with you is the greatest honor of my life, and I cannot wait to see where we grow next. I love you so much – thank you. To my mom, Merry, my dad, Tod, and my stepmom, Colette, thank you for believing in me and for supporting me throughout the entirety of my education. From elementary parent- iv teacher conferences and high school symposiums to college admissions, and now to becoming a Dr, you have all been there to guide me, make me laugh, and push me to be my best. I love you all so much, thank you! To the Oostendorp family, David, Terri, Sam, Alex, Nick, Lenox, and the two newest additions – Monty and Nolan, thank you for seamlessly making me part of the family and treating me like one of your own, I love you all. To Meg, my de facto sister, who from miles away continued to check in, ask questions, share in my excitement, and support my tears; I am so grateful to have you in my life. I cannot thank you enough for all the encouragement and validation, I love you! To Kat, you have been instrumental in my doctoral journey. From the first time we hung out at Birch & Barley in August of 2020 to today, and every day in between, you have been there for me. You checked in, gave advice, shared wisdom, and offered encouragement. You have become an important pillar in my life, and I am very grateful to have you as a colleague – and even more grateful to call you a friend. Thank you for being my graduate school guinea pig and getting me through this process. I am so looking forward to what we contribute to the field of Prevention Science in many more writing groups (and retreats!) to come. Lastly, to my grandmothers – Lorraine & Doris. You have been a huge part of my life and a major inspiration for the work that I do. I dedicate this dissertation in your honor. Thank you to all – I could not have done this without you. Congratulations to Jaymie Vandagriff for the closest guess to my final page count ;) v ADDRESSING INEQUITIES IN THE DEATH AND DYING EXPERIENCE THROUGH MULTIDISCIPLINARY EDUCATION AND TRAINING Abstract by Autumn E. Decker, Ph.D. Washington State University May 2024 Chair: Raven Weaver Globally, nationally, regionally, and locally, we are facing a population shift. The number of individuals aged 65 and older will increase exponentially in the coming years, particularly for racially, ethnically, and culturally diverse groups. People are living longer but not necessarily healthier lives. This increase in longevity, coupled with a stagnation in health span, will result in a greater number of those dying, thus increasing pressure on the health and death care systems. To support the health and human service workforce, there is a need for enhanced evidenced-based pedagogical interventions aimed at improving death education of these workers. Thus, this dissertation, following an upstream to downstream public health approach, includes three manuscripts that explored death education and end-of-life (EOL) experiences of several groups of people. The primary goals of this 3-manuscript dissertation were to: 1) explore how cultural content, cultural humility, and EOL experiences of diverse groups are integrated in undergraduate thanatology courses, 2) assess the literature related to death and dying coursework vi in health professional education curriculum, and 3) examine healthcare professionals’ involvement with the EOL experience for diverse groups of people. Together, this dissertation contributes to the state of death education both in undergraduate and health professional education settings and illuminates the influence that health professionals have on the EOL experience of decedents with diverse identities and their place of death. vii TABLE OF CONTENTS Page ACKNOWLEDGMENT................................................................................................................ iii ABSTRACT .....................................................................................................................................v LIST OF TABLES ....................................................................................................................... xiii LIST OF FIGURES .......................................................................................................................xv LIST OF ABBREVIATIONS ...................................................................................................... xvi CHAPTERS OVERARCHING INTRODUCTION TO THE THREE MANUSCRIPTS .......................1 Aging Population and Prevention Science ...............................................................1 Mortality in the United States ..................................................................................2 Inequities in Longevity ............................................................................................3 Foundational Theoretical Concepts .........................................................................5 Terror Management Theory .........................................................................5 Life Course Theory ......................................................................................6 A “Good Death” Experience ....................................................................................7 Inequities in End-of-life Choices .............................................................................8 Death Preparedness and Disparities .........................................................................9 Healthcare Provider Influence on End-of-life Experience .....................................12 The Importance of Death Education ......................................................................13 Dissertation Overview ...........................................................................................20 MANUSCRIPT ONE: CULTURALLY RESPONSIVE-SUSTAINABLE EDUCATIONAL STRATEGIES USED BY UNDERGRADUATE THANATOLOGY INSTRUCTORS .................................................................................23 viii Introduction ............................................................................................................24 The Culturally Responsive-Sustaining Education Framework ..................27 Study Purpose ........................................................................................................29 Methodology ..........................................................................................................30 Data and Sample ........................................................................................30 Recruitment ................................................................................................31 Study Participants ......................................................................................32 Data Collection ..........................................................................................32 Data Analysis .........................................................................................................34 Results ....................................................................................................................37 Culturally Responsive-Sustaining Education in Death and Dying (Qualitative Approach) ..............................................................................37 Welcoming and Affirming Environment (Theme 1) .....................37 Fostering High Expectations and Rigorous Instruction (Theme 2) .......................................................................................39 Inclusive Curriculum and Assessment (Theme 3) .........................41 Ongoing Professional Learning (Theme 4)....................................44 “Doing Your Own Work” (Theme 5) ............................................45 Classroom Culture (Theme 6) ........................................................46 Desire to Do More (Theme 7) ........................................................47 Differences in Topical Offerings and Instructor Death Anxiety by Characteristic (Quantitative Approach) .....................................................48 Topical Offerings ...........................................................................48 Death Anxiety ................................................................................48 A Convergent and Integrative Analysis .....................................................49 ix Discussion ..............................................................................................................49 Improved Resources and Training .............................................................51 Wisdom Sharing.........................................................................................51 Thanatology though a Multidisciplinary Lens ...........................................52 Instructor Death Anxiety............................................................................54 Limitations and Future Directions .............................................................54 Conclusion .................................................................................................55 MANUSCRIPT TWO: DEATH LITEARCY EDUCATION, TRAINING, AND CURRICULUM INTERVENTIONS FOR HEALTH PROFESSIONALS: A SCOPING REVIEW ......................................................................................................57 Introduction ............................................................................................................58 Life Course Theory ....................................................................................59 Death Preparedness ....................................................................................62 Death Literacy ............................................................................................63 State of Death Literacy in Health Professional Education .........................64 Cultural Humility and Death Education ....................................................65 Methodology ..........................................................................................................67 Identifying Studies .....................................................................................67 Study Selection ..........................................................................................68 Data Charting .............................................................................................69 Content Analysis ........................................................................................70 Reporting Results .......................................................................................70 Consultation with Stakeholders .................................................................70 Results ....................................................................................................................71 x Study Characteristics .................................................................................71 Intervention Components ...........................................................................71 Inclusion of Cultural Content.....................................................................75 Death Literacy Domains ............................................................................76 Discussion ..............................................................................................................78 Incorporation of Cultural Humility in Included Studies ............................80 Effective Intervention Components and Rigor ..........................................81 Domains of Death Literacy and Topics .....................................................82 Limitations and Future Directions .............................................................83 Conclusion .................................................................................................84 MANUSCRIPT THREE: HEALTHCARE PROFESSIONALS’ INFLUENCE ON OLDER ADULT’S END-OF-LIFE EXPERIENCE AND PLACE OF DEATH: A LATENT CLASS ANALYSIS ..........................................................................................85 Introduction ............................................................................................................86 Place of Death ............................................................................................90 Methodology ..........................................................................................................94 Data and Sample ........................................................................................94 Participants .................................................................................................94 Measures ....................................................................................................95 Data Analysis .........................................................................................................98 Phase 1: Developing the LCA....................................................................99 Phase 2: LCA with Covariates ...................................................................99 Phase 3: Distal Outcome with Moderation ..............................................100 Results ..................................................................................................................100 xi Developing the Latent Class Analysis .....................................................101 Description of the Responsiveness Classes .............................................101 Latent Class Analysis with Covariates ....................................................102 Latent Class Analysis and Distal Outcome by Covariate ........................104 Discussion ............................................................................................................106 Class Membership and Association with Demographic Characteristics and Place of Death ..........................................................108 Limitations and Future Directions ...........................................................111 Conclusion ...............................................................................................113 OVERARCHING CONCLUSION TO THE THREE MANUSCRIPTS ........................114 Overview of Findings ..........................................................................................114 Manuscript One: Undergraduate Death Education ..................................114 Manuscript Two: Death Literacy Education of Health Professionals .....117 Manuscript Three: End-of-Life Experience and Health Professional Influence ..................................................................................................119 Contributions to the Field of Lifespan Prevention Science and Opportunities for Future Research .......................................................................122 Cultural Humility in End-of-Life Care ....................................................123 Geographic Location and Political Climate .............................................124 Importance of Self-Care ...........................................................................126 Multidisciplinary Approach to End-of-Life .............................................127 Conclusion ...........................................................................................................128 REFERENCES ............................................................................................................................130 OVERARCHING INTRODUCTION REFERENCES .............................................130 MANUSCRIPT ONE REFERENCES ......................................................................151 xii MANUSCRUPT TWO REFERENCES ....................................................................162 MANUSCRUPT THREE REFERENCES ................................................................178 OVERARCHING CONCLUSION REFERENCES .................................................193 APPENDIX ..................................................................................................................................241 APPENDIX A: DEATH EDUCATION NATIONAL CURRICULUM DEMOGRAPHIC SURVEY .....................................................................................241 APPENDIX B: SEMI-STRUCTRUED INTERVIEW GUIDE ................................249 APPENDIX C: DATA CHARTING FORM FOR SCOPING REVIEW .................251 APPENDIX D: PRISMA-SCR CHECKLIST FOR REPORTING ...........................253 APPENDIX E: CODING BREAKDOWN FOR INDICATORS, COVARITIES, AND OUTCOMES ..........................................................................255 APPENDIX F: SIGNIFICANCE TESTING FOR “DON’T KNOW” RESPONSES BY COVARIATE ...............................................................................258 APPENDIX G: GRAPHS FOR LCA PHASE 3 .......................................................259 xiii LIST OF TABLES Page Table 1.1. Description of Relevant Guidelines and Recommendations for Achieving CS-R Principles......................................................................................................................................198 Table 1.2. Participant, University, and Course Characteristics ...................................................199 Table 1.3. Deductive and Inductive Themes from Qualitative Analysis of Interviews ...............201 Table 1.4. Extent to which Specific Topics were Covered in Death and Dying Courses ...........202 Table 1.5. Coverage of Specific Topics were Covered in Death and Dying Courses (Dichotomized) ...........................................................................................................................203 Table 1.6. Instructor Characteristics of Semi-structured Interview .............................................204 Table 1.7. Breakdown of Interviewee by Characteristic (n =27) ................................................205 Table 1.8. Differences in Topical Offerings by Characteristic ....................................................206 Table 1.9. Difference in Instructor Death Anxiety by Characteristic ..........................................207 Table 1.10. Joint Display of Mixed Methods Findings ...............................................................208 Table 1.11. Tangible Examples of Culturally Responsive-Sustaining Educational Principles for Thanatology Instructors.........................................................................................211 Table 2.1. Search Terms ..............................................................................................................213 Table 2.2. Characteristics of Included Studies (N =16) ...............................................................214 Table 2.3. Description of Included Studies (N = 16) ...................................................................215 Table 2.4. Intervention Details, Death Concepts, and Key Findings of Included Studies (N = 16) ........................................................................................................................................218 Table 2.5. Study and Death Literacy Construct ...........................................................................224 Table 2.6. Elements of Death Literacy Domains Present in Included Studies (N=16) ...............225 Table 2.7. Country of Excluded (non-US) Studies ......................................................................226 Table 3.1. Sample Demographics ................................................................................................227 xiv Table 3.2. Indicator Frequencies from Analytic Sample .............................................................228 Table 3.3. Outcome Frequencies .................................................................................................229 Table 3.4. Fit Indices for Model Specification ............................................................................230 Table 3.5. Class Membership and Item Response Probabilities for 4-Class Model ....................231 Table 3.6. Living Alone as a Predictor of Membership in Latent Class ......................................232 Table 3.7. Race as a Predictor of Membership in Latent Class ...................................................233 Table 3.8. Geographic Location as a Predictor of Membership in Latent Class .........................234 Table 3.9. Association between Latent Class and Place of Death by Covariate .........................235 xv LIST OF FIGURES Page Figure X.1. Key elements of life course theory (Giele & Elder, 1998) .......................................236 Figure X.2. Upstream to downstream dissertation approach .......................................................237 Figure 1.1. Convergent parrallel mixed methods design components (QUAL + QUAN) (Plano Clark, 2019) ......................................................................................................................238 Figure 2.1. Life course theory applied to an equitable death across the lifespan ........................239 Figure 2.2. PRISMA flow diagram ...............................................................................................240 xvi KEY ABBREVIATIONS Abbreviation Advance care planning ............................................................................................................... ACP Culturally responsive-sustaining ............................................................................................... CR-S End-of-life .................................................................................................................................. EOL Latent Class Analysis .................................................................................................................LCA Life course theory ...................................................................................................................... LCT Terror management theory ........................................................................................................ TMT 1 OVERARCHING INTRODUCTION TO THE THREE MANUSCRIPTS “…the reality is later life is not the end of inequality, it is inequality’s end game.” - C.M. Abramson Aging Population and Prevention Science Globally, nationally, regionally, and locally, we are facing a population shift. The number of individuals aged 65 and older will increase exponentially in the coming years (United Nations [U.N.], 2022). Not only are people getting older, but they are also living longer and not necessarily healthier lives (He & Dupre, 2021). This increase in longevity, coupled with a stagnation in health span, will result in a greater number of those dying, thus increasing pressure on the health care and death systems (Sleeman et al., 2019). Awareness of this approaching pressure provides ample opportunities for health professionals, educators, and prevention scientists to address long lasting inequalities in health, life, and death. Prevention science has historically addressed disease prevention and health promotion, but little work has been done to improve death preparedness, experience, and care (Vargas et al., 2019). By using prevention science principles like risk and protective factors (Jenson & Fraser, 2011), individuals who may be at risk for being unprepared for death could be identified for targeted intervention before a “bad death” happens. Death can occur at any point in the lifespan and has profound effects on individuals, families, communities, and society (Hank, 2021). While in general, people are living longer, healthier lives (Bennett et al., 2022), social determinants of health (e.g., race, geographic location, socioeconomic status) contribute to premature mortality (Center for Disease Control [CDC], 2017; Hoffman & Holmes, 2017) and vastly different end-of-life (EOL) experiences (Ornstein et al., 2020; Tobin et al., 2021). 2 Mortality in the United States Premature mortality, or death from all causes between the age of 30 and 70 (WHO, n.d.), is a vital indicator of a nation’s population health. Premature mortality has received governing body attention at both the global and national level. For example, addressing premature mortality is a component of one of the 17 Sustainable Development Goals developed by the United Nations to be achieved globally by 2030 (U.N., 2023). Sustainable Developmental Goal indicator 3.4.1 is to reduce premature mortality from non-communicable diseases (i.e., cancer, cardiovascular disease, diabetes. Respiratory disease) by one third (Frieden et al., 2020). In the United States, the Healthy People 2030 initiative is a program that sets national objectives to improve health and well-being across a myriad of indicators; it has goals that include increasing life expectancy, years free of activity limitation, and reducing disability (Healthy People 2030, 2019) However, premature mortality has been on the rise, primarily due to the COVID-19 pandemic. The age-adjusted death rate for the total population increased by 16.8% from 2019 to 2020, the largest single-year increase since this data has been available (Murphy et al., 2021). Deaths attributed to COVID-19 reflected an existing disparity in premature mortality. For example, life expectancy decreased by 1.13 years overall, but for Black and Latinx Americans, the decrease was three and five times higher, respectively (Andrasfay & Goldman, 2021). There are serious inequities in premature mortality that persist across several demographics, including but not limited to race/ethnicity, geographic location, socioeconomic position, and sex (Best et al., 2019; Graham & Pinto, 2018; Hill et al., 2023). For our society, eliminating disparities in premature death would save the U.S. an estimated $135 billion (about $420 per person in the US) in excess health costs and lost productivity (Turner & Price, 2020). 3 Inequities in Longevity Race/Ethnicity. Racial and ethnic disparities are very prevalent in health, life, and death. These disparities are driven by persistent and pervasive health inequities in many domains, known as social determinants of health, across the lifespan (Hill et al., 2023; Monroe et al., 2023). In the United States, compared to White people, Black, Hispanic, and American Indian and Alaskan Native (AIAN) people have worse health outcomes across most health metrics (Hill et al., 2023). The AIAN population has the highest premature death rate in the United States and is 1.5 times higher than that of White Americans. Best and colleagues (2018) postulated that American Indian or Alaskan Native individuals will see an even greater increase in premature mortality rates in the coming years. When prevalence rates were separated by disease status, Black Americans had overwhelmingly higher rates of premature death by cardiovascular disease (Best et al., 2018). These disparities also exist in the EOL experience; people from minoritized groups are more likely to get aggressive and invasive care, die in the hospital, and die with financial burdens, and are less likely to have good quality of care (Suntai et al., 2023). These disparities are evident within regional sectors as well. For example, in Washington State, the odds of premature death among all other racial groups are higher, compared to White individuals (Monsivais et al., 2020). Geographic Location. Like racial disparities, there are disparities related to the geographic location where one lives. Overall, premature mortality rates and their associated risk factors are more prevalent in rural areas, potentially due to existing gaps in income and poverty (Long et al., 2018) or limitations in an environment that creates challenges for social integration and community support (Graham & Pinto, 2018). Rural areas also lack infrastructure needed to deal with higher rates of disease and death. For example, there are fewer healthcare providers, particularly specialists, more transportation barriers, and infrastructure concerns that all 4 contribute to getting timely and adequate care, thus impacting premature mortality (Williams & Mattos, 2021). Socioeconomic Position. Socioeconomic position (SEP) is the social standing of a person or group and includes both resources and perceived power or class (Galobardes et al., 2006). In general, those with lower SEP are at higher risks for many adverse health outcomes including heart disease and cancer (Berger et al., 2020; Havranek et al., 2015). Like other social conditions, lower SEP is connected to higher risk of death from all causes and mortality (Andersen et al., 2020; Stringhini et al., 2010). Relatedly, individuals with lower SEP also have higher rates of healthcare utilization in the last year of life and are more likely to die in the hospital than at home (Davies et al., 2019). Sex. Overall, women tend to live longer than men. The gap in life expectancy between men and women increased to about 6 years in 2021, the largest gap since 1996. (Yan et al., 2024) Women typically live with more chronic health conditions than men, meaning they live more years with health conditions (Baum et al., 2021). As far as premature mortality is concerned, men experience premature mortality at a much higher rate than women (Best et al., 2018), but these differences must be considered in the context of other intersecting identities. Intersectional Identities. The presence of multiple intersecting identities can add a cumulative effect to mortality risk. For example, those who are aging while Black, but also identify as LGBTQ+, are at increased risk for isolation, marginalization, and discrimination by the health care system (Candrian & Cloyes, 2021). Health inequalities experienced by historically marginalized groups are exacerbated by residential location (Moreno-Leguizamon et al., 2017) suggesting cumulative disadvantage throughout life. For example, intersections of identities across race, socioeconomic position, sex, age, disease state (e.g., dementia, traumatic 5 brain injury), and spoken language, among others, increased individuals’ risk of mortality from injury (Starosta et al., 2023) and COVID-19 (Griffith et al., 2021). Theoretical concepts help to contextualize and understand the cumulative (Abramson, 2016) effects of life experiences, identities, and historical context on health-related outcomes for people with many different identities. Before delving further into more empirical literature, it is beneficial to briefly review some foundational theoretical concepts to death and dying including terror management theory and life course theory. Foundational Theoretical Concepts Terror Management Theory While I will not be using terror management theory (TMT) as the specific theoretical basis or framework of any of my proposed dissertation papers, it is still important to situate my work within this foundation theory of death and dying. TMT was originally developed by Greenberg and colleagues in 1986. This theory helps to explain the cognitive dissonance individuals experience as the conflict between their survival instinct and awareness of their own mortality (i.e., the discomfort that occurs when thoughts and behaviors do not line up). In TMT, when people become aware of their own death, they adopt worldviews that allow them to find meaning in their lives (Greenberg et al., 1986). TMT has been used to explain health decision making. In the TMT, applied to health, individuals’ health decision making is influenced by their conscious thoughts of health and dying (Arndt & Goldenberg, 2017). Thus, priming individuals with thoughts of mortality prior to crisis may be an effective strategy to increase desired health behaviors (Morris et al., 2019). It is also posited that the cognitive dissonance that emerges because of terror management has a role to play in the death avoidant culture of many western nations (Perry et al., 2022). While TMT can help explain the psychological process of death 6 avoidance, it also can also lead to increased stereotyping and prejudice against certain groups, like after a terrorist attack (Fishcher-Preßler et al., 2019). This theory is foundational for thanatology (i.e., the study of death and dying) but does not explain individual development, like other relevant theories, including life course theory. Life Course Theory Life course theory (LCT) posits that the reciprocal interplay between historical forces and culture, timing of life events, linked lives (i.e., the idea that an individual’s life is embedded in and influenced by a large network of relationships), and individual human agency influence lifespan development (Figure X.1.; Elder, 1992). This theory emerged as a way to comprehend the mental, physical, and social health and development of individuals and identify factors that shape their lives (Hutchinson, 2014). The following simple vignettes illustrate how LCT can be used to conceptualize a cancer diagnosis of two different people. 1. Lorraine is a 60-year-old Black woman that was recently diagnosed with Stage Two pancreatic cancer (Timing). Lorraine grew up a middle child of six children in the Mississippi Delta where she lived through the height of the civil rights movement (History and Culture). Lorraine left school after Grade 6 and works as a librarian in a rural town of less than 5,000 people, has been married for the last 35 years and has three children (Linked Lives). Until her diagnosis, Lorraine had not been to a doctor since the traumatic birth of her last child (Linked Lives, Human Agency) but she has suffered from several undiagnosed illnesses for the last several years. Lorraine has recently started treatment for her cancer and must take a bus to and from appointments because her husband has taken on a second job to afford treatment. After a year of treatment, Lorraine died from her disease. 7 2. Jacob is a 35-year-old White man that was recently diagnosed with Stage Two pancreatic cancer (Timing). Jacob grew up in the suburbs of a large city in Michigan where he was the middle child of three children (Linked Lives). Jacob attended a large university and currently practices as a mental health therapist, is married, and has no children (Linked Lives). Jacob has regularly seen a doctor his whole life (Linked Lives, Human Agency). Jacob has started treatment for his cancer and his wife is his primary caregiver. After a year of treatment, Jacob entered remission. While simplified, these two vignettes illustrate how the same disease can result in opposing trajectories for different people based on the circumstances in which they were born, developed, and lived. For a deeper review of LCT and its application to death and dying, please see the introduction section in Paper #2, as I am using LCT as a theoretical framework to situate that paper. A “Good Death” Experience The concept of a good death is highly dependent on cultural, religious, and societal values (Cain & McClesky, 2019; Corpora, 2022). In western cultures, a “good death” is generally characterized by following a specific dying process, by being pain-free, having religiosity and treatment preferences respected, maintaining dignity and emotional well-being, a presence of loved ones, and a respectful relationship with health care provider (Meier et al., 2016). These typical characteristics are a good place to start but the definition of a good death is highly individualized, malleable, and based on cultural context and life experiences, and there is no clear and recognized definition of a “good death” (Kastbom et al., 2016; Krikorian et al., 2020). 8 The priorities of a “good death” present differently based on personal characteristics, illness status, and relationship to the dying person. Interactions between race, cultural, and religious affiliation shape what is important to an individual and how they die. For example, individuals with a stronger religious affiliation are more likely to believe a “good death” should include being “at peace with god” (Cain & McCleskey, 2019) while individuals living with a terminal illness emphasize not being a burden to the family (Yun et al., 2018). Unsurprisingly, family caregivers emphasize the importance of presence of family at the EOL (Yun et al., 2018) and good communication with healthcare providers (Bovero et al., 2019). Healthcare providers and staff highlight being pain-free (Yun et al., 2018) and dying in peace with a lack of distress (Bovero et al., 2019; Payne et al., 1996). While the idea of a “good death” has merit, the term has received scrutiny because of the implication of a “bad death” in its opposition (Wilson et al., 2019). The field is moving toward using “equitable death” or “harmonious death” to demonstrate this concept (Hing & Mak, 2019). Regardless of the recognized characteristics of a “good death,” it is important to be informed of available EOL options and opportunities for individuals and their families. Inequities in End-of-life Choices There are a wide range of EOL care interventions to choose from, depending on where one lives. People are generally more familiar with comfort care options, like palliative care and hospice. Palliative care is specialized medical care for people living with a serious illness (e.g., cancer, congestive heart failure, dementia, etc.) that is provided in conjunction with curative treatment but focuses on enhancing quality of life (National Institute on Aging [NIA], 2021). This care is often provided in hospitals, nursing homes, outpatient clinics and at home, and may be covered by Medicare or Medicaid. Hospice is a type of palliative care that focuses on comfort 9 and quality of life for those who have been diagnosed with a terminal illness and have been given six months or less to live (NIA, 2021). Hospice care can be given in a facility (i.e., hospital, nursing home hospice center) or at home and is covered by Medicare or other insurance companies. Voluntary stopping eating and drinking (VSED) is the nationwide legal process of declining food, liquids, and feeding to shorten the dying process; it is another viable EOL option that terminally ill people without a time-specified diagnosis may use (Compassion and Choices, 2022a). In some states, individuals may utilize Medical Aid in Dying (MAID) as their EOL choice. MAID is an EOL choice that allows mentally capable, terminally ill adults who can self-ingest medication, to ingest a prescription medication that will end their life (Compassion and Choices, 2022b). MAID is currently a legal option in 11 states (CA, CO, D.C., HI, ME, MO, NJ, NM, OR, VT, and WA). Deciding on, or at least exploring available EOL options is an essential component of death preparedness. Culture has immense influence on the way patients and families make EOL decisions and how professionals provide care (Glyn-Blanco et al., 2023). EOL care and choice are fundamental rights that everyone deserves, regardless of their life circumstances (e.g., race, gender, sexual orientation, socioeconomic position, immigrant status; Ryerson et al., 2022). Death Preparedness and Disparities Death preparedness is highly individualized and fluid. Previous work has conceptualized death preparedness as implementing a death plan after engaging in conversations with a healthcare provider (McLeod-Sordjan, 2014). For the purposes of this paper, death preparedness is conceptualized as engaging in either/both informal preparation and formal preparation. Informal preparation typically includes having conversations about EOL care and wishes with loved ones or a health care provider, while formal preparation typically includes documentation 10 of EOL care desires and wishes, regardless of which formal advance care planning document(s) are used (Brighton & Bristowe, 2016; Shin Tan et al., 2019). Disparities in Advance Care Planning Advance care planning (ACP) is the process of identifying and documenting one’s values, goals, and preferences of future medical care (Sudore et al., 2017). Individuals with lower income, with lower levels of education (Orlovic et al., 2021), or who identify as non-Hispanic Black or Hispanics have far lower rates of formal ACP behaviors (Hamel et al., 2017) compared to White individuals. This disparity can partially be explained by survival expectations among minorized populations, or the number of years one believes they will continue to live. In one study, researchers controlled for subjective life expectancy (i.e., beliefs about one’s future survival) and found that Black and Hispanic older adults had significantly lower rates of ACP (Lou & Carr, 2022). Those who perceive a 50% chance, or more, of surviving until the age of 80 are significantly more likely to have informal discussions about EOL care than those who perceive less than a 50% chance of surviving to age 80 (Lou & Carr, 2022). Relatedly, those who report being uncertain about their survival are significantly less likely to have engaged in formal ACP (Lou & Carr, 2022). These findings suggest a need for increasing ACP among these groups to increase awareness of and adherence to EOL care options; this could inform a potential point of intervention. Formal death preparation, such as documenting wishes, is a key step toward effective EOL planning, which can foster better mental health, quality of life, and EOL care (Wen et al., 2022). Disparities in EOL Care Choices There is substantial variability in EOL care planning and choices between groups, although there is within-group variation, too. For example, racial and ethnic disparities are 11 exceedingly prevalent in hospice use; non-Hispanic Black and Black Americans are far less likely to use hospice compared to their White counterparts (Orlovic et al., 2019; Ornstein et al., 2020). Indigenous populations and individuals who speak English as a secondary language are also less likely to use hospice (Tobin et al., 2021). The root of these disparities can be attributed to several factors, including lack of knowledge and engagement in ACP behaviors, as well as cultural preferences. For instance, Black Americans are more likely to request and receive more aggressive and invasive treatments near the EOL, possibly due to a lifetime of experiencing racism in institutional settings resulting in provider mistrust (Ornstein et al., 2022). Certain cultures may prefer care by family or friends, as opposed to care from hospice employees/volunteers. For instance, Hispanic Americans tend to emphasize the role of family and religion in EOL care and thus might be more hesitant to engage in hospice use (Dittborn et al., 2021). However, involving family care is one of the pillars of the hospice mission; hospice care involves the family more than other EOL care options (Seaman et al., 2014). It is also important to note the lack of representation, reporting, and analysis by race and ethnic groups in hospice and palliative medicine literature. For example, over half of the papers included in one review did not mention or address race or ethnicity in their analysis (Rhodes et al., 2022), which highlights a need for disaggregated EOL research. Geographic factors also influence the viability of certain EOL care options. Individuals who live farther from urban areas are less likely to receive hospice care, likely due to the lack of service availability (Pearson et al., 2017; Tobin et al., 2021). Transportation barriers, more commonly experienced by individuals living in rural areas, exacerbate challenges related to service use broadly (Cohen, 2021) and specifically, as it relates to EOL care options (Wang et al., 2015). The shortage of healthcare providers working in rural areas is a barrier to regular 12 healthcare utilization for rural residents (Nuako et al., 2022), which influences timely referral to necessary EOL services and supports (Cerni et al., 2020). LGBTQIA+ identifying individuals’ experience discrimination in healthcare settings throughout their lives, and into their deaths (Casanova-Perez, 2021). These individuals are more likely to have nontraditional family structures that make up a “chosen” family, creating a unique environment for EOL decision making (Cloyes et al., 2018), though there may be legal and economic barriers to including chosen families in the decision making, further exacerbating existing EOL disparities. Disparities in the EOL experiences of these groups are driven by fear of discrimination by health care providers, homophobia/transphobia, and social isolation (Rosa et al., 2023). These associations point to the important influence that health providers have on an individual’s EOL experience. Healthcare Provider Influence on End-of-Life Experience Healthcare providers can have strong influence of the death experience among their patients, for better or for worse. They may act as caregivers, decision-makers, and facilitators throughout the dying experience (Parola et al., 2018; Singh et al., 2021). Though this role is ill-defined and situationally fluid, it is imperative that healthcare providers are well trained in culturally-informed EOL care to avoid causing deleterious effects on patients and/or their families (Glass et al., 2021; Glyn-Blanco et al., 2023). Researchers have interviewed clinicians, who frequently express difficulty discussing (and even avoidance of) initiating ACP conversations with several racial and ethnic groups (e.g., African American, Hispanic, Asian, Native American), non-native English speakers, and people with certain religious beliefs (Ashana et al., 2022). Interestingly, clinicians attributed EOL communication barriers to the patient (e.g., patient is not interested; patient has low health literacy) rather than to themselves or 13 the healthcare system. The detrimental and dangerous view that patients are responsible for initiating ACP communication should be a focus of future research. As such, part of my dissertation examines the state of provider training related to ACP and EOL communication. A nationally representative study in 2010 found that medical students who had more coursework and bedside teaching experience, compared to those without, were more likely to report feeling comfortable to perform EOL care and have better attitudes toward EOL care (Billings et al., 2010). Updated research is urgently needed to assess death education, both at the undergraduate and graduate health professional level. Moreover, to support the wave of diverse baby boomers that should be preparing for the end of their life, it is critical to consider the adequacy and competency of EOL communication and care. The Importance of Death Education For the purpose of this dissertation, death education is broadly conceptualized as any education or training focused on topics related to thanatology, or the study of death, dying, EOL, grief, loss, and bereavement (Fonseca & Testoni, 2011). Courses on these topics can raise awareness of key concepts, promote EOL conversations with friends and family, and inspire students to pursue careers in the death space (Kulp et al., 2021). There is a great need for coursework in this area as the COVID-19 pandemic ushered in high rates of death anxiety and exposure to death, creating a unique opportunity for death educators (Weaver et al., 2022). Undergraduate Postsecondary education on death and dying can reduce fear of death and death anxiety and improve overall mental health (Weisskirch & Crossman, 2022). Undergraduate students who took a death education course, compared to those who had not, reported higher levels of happiness and lower alexithymia, or the inability to understand or define their emotions, a key risk factor for depression (Testoni et al., 2019). Engaging in classroom interventions, such as the 14 “Before I do” wall, which is a global public art project where passersby can fill in what they hope to do before they die, provides an opportunity for undergraduate students to reflect on their religiosity, representations, and fear of death (Testoni et al., 2018). Undergraduate students from the social sciences enrolled in courses related to death education, compared to those not enrolled, were less likely to have a strong fear of others dying, were more likely to have death acceptance, and had improved understanding of the meaning of life (Lekes et al., 2022; Zorotovich & Cohen, 2022) However, these studies include those who self-select into these classes, potentially biasing the results as these students may have a predisposition to be more death positive. Exposure to palliative care coursework has been shown to increase interest in working in the field of thanatology and, potentially, expanding their education to the graduate level (Testoni et al., 2023). Despite these documented benefits, less than 10% of all universities/colleges in the U.S. offer thanatology courses (Reese, 2014). It is even less clear how (in)frequently graduate-level courses address death and dying, even though it is imperative that health professionals (e.g., social workers, nurses, physicians, and pharmacists) be properly trained to handle EOL conversations, as they will inevitably encounter dying patients and likely will affect the dying experience directly. Graduate & Clinical Programs Death education at the graduate level is of utmost importance. Students in graduate programs related to the health sciences will routinely be exposed to death and dying as a part of their careers but most lack proper death education (Bharmal et al., 2022; Stein et al., 2019). While palliative and hospice care teams may vary based on an individual’s mental, emotional, physical, and spiritual needs, teams usually include physicians, nurses, social workers, counselors, pharmacists, and more (NIA, 2021). With these professions being key players in the death care system, I will provide a review of the state of death education in each, below. It is 15 beyond the scope of this dissertation to compare the differences in educational pathways, governing bodies, and accreditation. However, it is important to recognize the unique educational pathways for these professions. For example, medical schools can lead to Doctor of Medicine (MD) or Doctorate of Osteopathic Medicine (DO); nursing programs can include Advanced Practice Registered Nurses such as Nurse Practitioners (NP), Registered Nurses (RN) or Licensed Practical Nursing (LPN), at the bachelors, masters or doctoral level; and social work programs likely result in Licensed Clinical Social Worker (LCSW) while counseling/psychology may include programs at the masters or doctoral level and can lead to a career as, but not limited to, a Licensed Professional Counselor (LPC), Licensed Mental Health Counselor (LMHC) or a Psychologist. Medical School. Physicians are key healthcare providers in the EOL space, especially those from specialties such as family physicians, emergency room doctors, oncology, and palliative care. They provide vital diagnoses and prescriptions and serve as a source of comfort for people living with terminal illness and/or facing death (Ramanayake et al., 2016). Most physicians report getting their death education as part of their clinical rotations or from on-the-job training – not from their medical school curriculum (Bharmal et al., 2022). This points to a lack of integration of evidence-based death education interventions systematically infused into medical school education (Dickinson, 2006). There are some promising death education interventions that may help to close this gap. Experiential learning, where medical students have immersive experiences caring for dying patients, attending autopsies, and witnessing EOL planning conversations can improve their feelings of preparedness and skills in EOL care and communication (Jeffers et al., 2021). Experiencing a patient death is an emotionally significant event for physicians, but even more so for medical students (Smith-Han, 2016). Yet, students 16 report feeling unsupported by their mentors and programs when it comes to coping with these losses (Trivate et al., 2019). Nursing. Nurses are essential in caring for dying patients and their families (Hebert et al., 2011). At the EOL, they typically provide care that promotes comfort, relieves pain and other symptoms, and provides support for the patient and loved ones (American Nurses Association, 2016). However, nursing students report feeling unprepared to care for dying patients and a desire for more support and education from within their programs (Yoong et al., 2023). In fact, nursing students have an expectation that EOL care will be incorporated into their education but end up getting most of their education from experiential learning as a part of their internships or jobs (Lombardo et al., 2022). There is room for improvement and more widespread availability of death education for nursing students (Hagelin et al., 2021). Researchers have found death education interventions can decrease death anxiety among nursing students (Wu et al., 2023). For example, students in the experimental group of one pedagogical intervention that utilized principles of constructivist theory, which emphasizes personal feelings and reflection and cooperative learning, had lower death anxiety and better awareness of concepts related to death and dying than the control group. While nurses report feeling better prepared for providing EOL care (Montagnini et al., 2018) and have better EOL knowledge than doctors (Martin-Martin et al., 2021)), further research is needed to understand how death and dying has been integrated into the education/training/curriculum of our nursing workforce. Social Work. Social workers are recognized as vital members of hospice and palliative care teams. Their role in the death care system varies but may include, but is not limited to, case management, counseling and psychotherapy, advance care planning, and grief and bereavement counseling (Thiel et al., 2020). There has been a push to train social workers in competencies 17 related to EOL and palliative care, but a recent study found that of the 105 Masters of Social Work programs that responded, only 10 (9.5%) had specific courses dedicated to death, dying, grief, loss, or bereavement (Stein et al., 2019). Despite the low offering rate of these courses, social work students demonstrated positive attitudes and a strong willingness to engage in learning about EOL (Kwon et al., 2014). Engaging in a traumatic death course that focused on providing services to terminally ill clients and their families increased social work students’ feelings of clinical preparedness, as well as their own mindfulness and empathy (Thieleman & Cacciatore, 2019). Social work students have expressed a desire for specific training and support on bereavement, grief, and loss with an emphasis on learning skills and knowledge regarding the role of cultural diversity in the bereavement process (Turner & Price, 2020). Counseling/Psychology. Counselors and psychologists hold major roles in the death system, particularly for those with terminal illness or survivors of decedents (Jung et al., 2021). Counseling and psychology can include mental health counselors, psychiatrists, and marriage and family therapists. Professionals in these roles often face death and dying in their everyday work, but the extent to which they obtained specific education on these topics in their graduate programs is unknown. However, evidence supports the benefits of receiving death education. For example, a death literacy training significantly increased students’ interest in EOL topics and their opinion of the psychologist’s role in the EOL of patients or family members (Vivekanada et al., 2021; educational trainings can decrease death anxiety and death avoidance (Ronconi et al., 2023). Online death literacy educational interventions have also shown promising results for increasing death literacy among psychology students. One such 30-hour intensive course improved counselor-in-trainings’ openness to death concepts and reduced personal fear of death, which can support mental health counselors in processing the death experiences of their clients 18 (Harrawood et al., 2011). Students in these professions report positive outcomes from receiving death education, and they report a need for receiving more systematic education within their training programs (Orkibi et al., 2021). In a study aimed at assessing interest in EOL and palliative care coursework of master’s students in psychology, one participant reported that “[receiving death education is] a necessity and as a void to be filled in our training and development” (Orkibi et al., 2021, pp. 8). In fact, most participants reported a need for sufficient practical education, such as clinical case or hands-on work that would aid in their ability to do death work, coupled with the opportunity to process their own painful experiences of loss to ensure a well-rounded education in death and dying (Orkibi et al., 2021). Pharmacy. Pharmacy tends to be overlooked when thinking about the death care system. However, pharmacists have roles far beyond the traditional “commercial” staff pharmacist at Walgreens, Safeway, or Rite Aid. Pharmacists often work in hospitals, intensive care units, and emergency rooms where they are involved in direct patient care (Kehrer et al., 2013), particularly in states with medical aid in dying. However, formal education specific to death and dying only occurs in 10% of pharmacy schools, from which 82% offer a module or lecture on death and dying, which amounts to an average of less than 7 hours of instruction throughout the entire four years of training (Dickinson, 2012). Despite the few hours of instruction on death related topics, attitudes of pharmacy students who have been exposed to interventions like “Death over Dessert,” a spin-off of the effective “Death over Dinner” intervention (South & Elton, 2017), have demonstrated that pharmacy students are receptive to learning about death and dying and find these interventions helpful for processing their own personal losses and defining the role of the pharmacist at the EOL (Konishi et al., 2023; Mahan & Bailey, 2022). There has been a recent push for improved integration of addressing matters of life and death in pharmacy curriculum, 19 but very little work has focused on infusing death education into curriculum development (Sikora & Murray, 2022), highlighting a need for future research. Upstream to Downstream Approach This literature review, starting with the aging population and inequalities in mortality and the death experience, followed by the importance of the death care and healthcare systems, and the training of undergraduate and graduate professionals that will work in the death space provides evidence of key considerations and identifies gaps that this proposed dissertation aims to fill. This dissertation follows an upstream to downstream approach (See Figure X.2.). The upstream to downstream approach is a public health parable, developed by Irving Zola and popularized by McKinley (1979), that details an individual standing by a river and noticing that it keeps filling up with drowning people. This individual continues to pull people out of the water but cannot keep up with the sheer number of victims. They decide to travel upstream to see why people keep falling into the river in the first place. This parable describes the underlying mechanism of prevention science, which often focuses on the upstream risk and protective factors of individual behaviors and outcomes (Williams et al., 2008). In this parable, downstream factors mirror tertiary prevention, or the management of an already diagnosed disease or problem; midstream factors are those secondary prevention strategies that help reduce disease for those at higher risk (e.g., cancer screening); and upstream factors involve primary prevention and employ the tactics used to prevent disease or injury before it occurs at all (e.g., immunization, health education, policy; Baumann & Ylinen, 2020; Kisling & Das, 2023). I use this parable to conceptualize my dissertation, although in a slightly different way: people falling in the river, the downstream effects, are the inequalities experienced at the EOL; how healthcare professional influences that experience, the midstream factors are represented by 20 the death education of healthcare professionals and upstream factors are presented by the death education experience provided in undergraduate university/college courses. In essence, the downstream effects experienced at the EOL are influenced by the trickle down of mid and upstream death education experiences of healthcare professionals both at the graduate and undergraduate level. Each of my three papers align with upstream, midstream, and downstream factors and build on each other, resulting in an expanded knowledge base of death education of our healthcare professionals and its influence on the individual. Dissertation Overview Using an upstream to downstream approach, as outlined above, my dissertation consists of three studies that aim to contribute to the literature on reducing inequalities in the EOL experience. The primary goals of this 3-manuscript dissertation are to 1) explore how cultural content, cultural humility, and EOL experiences of diverse groups are integrated in undergraduate thanatology courses, 2) assess the literature related to death and dying coursework in health professional education curriculum, and 3) examine healthcare professionals’ involvement with the EOL experience for diverse groups of people. I will briefly describe each paper and the associated journal of submission below. Study 1. I conducted a convergent parallel mixed methods analysis to explore the state of postsecondary death education cross-nationally to evaluate the integration of diverse perspectives and cultural humility in death and dying related courses and understand the needs of thanatology instructors in infusing cultural humility into their course. This study utilized data collected in Spring 2023 with Drs. Raven Weaver and Cory Bolkan for a project I was deeply involved; I contributed to survey and semi-structure interview guide development, conducted the majority of interviews, and supported the interview transcription process. I used deductive and inductive 21 analytic procedures to analyze semi-structured interviews and quantitative methods to compare offered topics and death anxiety of instructors based on university, departmental and personal characteristics. I anticipate submitting to the Gerontology & Geriatrics Education, which publishes work related to research, curriculum development, program evaluation and classroom innovations related to gerontology and geriatrics. As such, this manuscript aims to uncover best practices in thanatology related postsecondary courses in accordance with the Culturally Responsive-Sustaining Education Framework. This journal accepts articles that follow APA 7th formatting and a maximum of 6,000 words. Study 2. I conducted a scoping review of research published from January 1, 2013 to October 1, 2023 that focused on curriculum or training interventions related to death and dying in formal health professional education fields, including Medical School, Nursing, Social Work, Therapy/Counseling, and Pharmacy. This scoping review aimed to determine effective core components of death education interventions, training, and curriculum infusions that are utilized by healthcare professional education systems to enhance death and dying related competencies of the professional workforce. Advances in Health Sciences Education is my target journal for this manuscript, as the journal focuses on translating theory to practice in topics relevant to health education such as curriculum development or comparisons, program evaluation, continuing education, and more. This journal accepts scoping review methodologies, does not have a word count limit, and follows APA 7th formatting. Study 3. Using data from the National Health and Aging Trends Study, I conducted a latent class analysis with covariates and a distal outcome to assess a) if there are unique profiles of healthcare professionals’ influence on decedents EOL care and experience, b) if those profiles change as a function of life experience of the decedent (e.g., race, geographic location, living 22 alone) and c) if those profiles and covariates are associated with place of death (e.g., hospital, residential care community or at home). By submitting to Journal of Applied Gerontology, which prioritizes research that enhances understanding of or intends to improve the health and quality of life of older persons, this manuscript aims to determine how health professional involvement influences the EOL experience for racially, geographically, and socially diverse dying people. This journal accepts full length articles (limit 6,000 words) that follow APA 7th guidelines for formatting. 23 MANUSCRIPT ONE: CULTURALLY RESPONSIVE-SUSTAINING EDUCATIONAL STRATEGIES USED BY UNDERGRADUATE THANATOLOGY INSTRUCTORS Originally written for submission to Gerontology and Geriatrics Education 24 Introduction By 2040, one in four people living in the United States (U.S.) will be 65 years of age or older (Administration on Community Living [ACL], 2022) and people are living longer than ever before. Though there was a significant drop in average life expectancy in the U.S. due to the Coronavirus pandemic (COVID-19), disproportionately so for Black and Latino populations (Andrasafy & Goldman, 2021), it had been on an upward trajectory, peaking at 78.8 years in 2019 (Center for Disease Control [CDC], 2020). Life expectancy ranges widely by race/ethnicity, as well as sex (Baum et al., 2021), yet our aging population will continue to become even more racially, ethnically, and culturally diverse. Racial and ethnic populations are projected to comprise 34% of adults aged 65+ by 2040, a 10% increase from 2020 (ACL, 2022). With an increasingly diverse population, existing health disparities must be addressed. Racial/ethnic disparities have been attributed to a myriad of economic, neighborhood, educational, community, and social factors, many of which are modifiable (Ndugga & Aritga, 2023). These health disparities stem from systematic and pervasive health inequities across the health care system. These inequities result in higher rates of diseases, disability, and mortality (Benjamins et al., 2021; CDC, 2023; Zaninotto et al., 2020). A focus on increasing health span and compressing morbidity, reducing the length time of time one spends sick or disabled (Fries, 2005), a key Healthy People 2023 goal (Healthy People 2030, 2019), is an avenue for reducing end-of-life (EOL) disparities. The number of individuals experiencing serious health-related suffering and may rely on end-of-life (EOL) services and supports, is projected to increase two-fold by 2060 (Sleeman et al., 2019). Thus, it is imperative to ensure health and human service workforce is properly trained in gerontology (i.e., the study of aging) and thanatology (i.e., the study of death and dying); moreover, it is critical to decenter ‘whiteness’ as the de facto approach to teaching about EOL experiences and approach it with culturally humility. Cultural 25 humility is the ongoing process of recognizing diversity and power imbalances among individuals, groups, or communities and includes self-reflection and lifelong learning to aid in respectful and supportive interactions with others (Foronda, 2019). The field of health and human services typically is a public-facing job that involves direct contact with others; people working in health and human services focus on improving the health, safety, and well-being of others (Health and Human Services, 2020). There is an increasing demand for health and human service workers in the U.S., particularly for working with older adults (American Hospital Association, 2022). Using “health and human services” as an umbrella term, it includes a wide range of diverse careers, including healthcare professions (e.g., physicians, nurses, dentists, pharmacists) and human services (e.g., social work, counseling, human resources). With direct and sustained contact with people, health and human service workers are regularly exposed to death (Samson & Shvartzman, 2018) but typically have little education and support to handle the associated emotional and mental toll (Ibrahim et al., 2023). The inherent goal of health professionals is to keep people alive and healthy; however, there comes a point where death is imminent (Cohen-Mansfield et al., 2018). Robust death education of health and human service workers would help ease the death and dying experience for patients and their families, but it would also help health and human service workers understand their own personal attitudes toward and relationship with death and dying (Trivate et al., 2019). Many promising death education programs have focused on increasing knowledge of EOL care options and skill development to provide adequate EOL services, yet systematic and specific integration of EOL concepts in health professional education remains poor (Stein et al., 2019; Yoong et al., 2023). Individuals enrolled in health professional programs often express a strong desire for more education and support related to EOL, but few receive it (Lombardo et al., 26 2022; Orkibi et al., 2021). Death education can improve death anxiety, reduce depression and generalized anxiety, increase willingness to discuss EOL with family, friends, and patients, and elevate interest in working in EOL-focused careers (Thieleman & Cacciatore, 2019; Wu et al., 2023). Though there is a need for more rigorous work, but based the available evidence, I postulate individuals working in the health and human service sector would be better prepared to deal with EOL-related issues if their death education journey began during postsecondary education. University/college education is uniquely positioned to act as a launching pad for proper death education among the health and human services workforce because most jobs in this sector require a minimum of a bachelors or associates level degree (Public Health Degrees, 2023). However, the most recently published statistics estimated that less than 10% of all universities/colleges in the U.S. offer thanatology courses (Reese, 2014). This may reflect a hesitancy to talk about death and dying in the U.S. or a fear of increasing depression and anxiety in undergraduate students. In actuality, students enrolled in thanatology-related coursework reported lower levels of depression and anxiety after taking the course than students who were not enrolled (Weisskirch & Crossman, 2022), reflecting an unintended benefit of introducing difficult content in a non-threatening way. Individuals with the privilege of taking a thanatology course reported high levels of engagement with the content (Kulp et al., 2021) and one recent study demonstrated the value of offering death education courses as it relates to increased motivation to work in fields dedicated to EOL care (Testoni et al., 2023). Instructors in these courses often utilize the expertise of community partners (e.g., from nursing homes, hospice organizations, funeral homes) to deliver meaningful content, resulting in higher-than-average evaluations, compared to other courses in the same department (Lemaster & Moyer, 2020). 27 However, there may be differences in course delivery and content by institution or instructor that could impact student outcomes. For example, instructors teaching thanatology courses in private or religious institutions may be more limited in teaching about certain controversial topics (e.g., medical aid in dying) because of upholding institutional values and missions (Lyon et al., 2005; Parker et al., 2007). The current state of this relationship is unknown. The benefits of learning about death and dying in undergraduate courses are well documented, but there is a lack of information on delivering content with cultural humility. A potential avenue for enhancing the quality and relevance of death education in postsecondary educational settings for the future/anticipated health and human services workforce is to integrate culturally responsive-sustaining education pedagogies into instruction. The Culturally Responsive-Sustaining Education Framework Culturally responsive-sustaining (CR-S) education is a pedagogical approach developed by Ladson-Billings (1995). This approach emphasizes a fluid understanding of culture and an explicit engagement of teaching practice rooted in equity and justice to foster a learning environment for everyone (Ladson-Billings, 2014). It recognizes that cultural difference (e.g., racial, ethnic, linguistic, gender, sexuality, ability) should be treated as assets for teaching and learning and requires educators to learn about and develop meaningful relationships with their students (Ladson-Billings, 1995). While a full historical review of CR-S education is beyond the scope of the current paper (see Ladson-Billings, 2021 for more information), CR-S pedagogy has been applied successfully to science education in the Netherlands (Smith et al., 2022) and mathematics education in New Zealand (Hunter et al., 2018), showing great promise for application in a multitude of university settings, thus making it an appropriate framework for the current study. 28 The New York State Education Department (NYSED) established a CR-S framework to provide teachers, school and district leadership, parents, families, and communities, as well as higher education faculty and administrators, with tools to promote CR-S education within the school system. Through rigorous design and use of an expert committee, the CR-S framework aims to help educators “create student-centered learning environments that: affirm racial, linguistic and cultural identities; prepare students for rigor and independent learning; develop students’ abilities to connect across lines of difference; elevate historically marginalized voices; and empower students as agents of social change” (NYSED, 2018, p. 12). This framework has four key principles: a welcoming and affirming environment; fostering high expectations and rigorous instruction; inclusive curriculum and assessment; and ongoing professional learning. See Table 1.1. for a more detailed description of each principle, specific guidelines, and recommendations for achieving it; the presented guidelines/recommendations are the most relevant to the current study for achieving each of the four principles of the CR-S framework (NYSED, 2018). Below, I offer a brief definition of each principle, as articulated by NYSED (2018). Welcoming and Affirming Environment. This principle heavily emphasizes creating and maintaining a safe learning environment where students feel represented and are treated with dignity and respect. The learning space should ensure that “all cultural identities (i.e., race, ethnicity, age, gender, sexual orientation, disability, language, religion, socioeconomic background) are affirmed, valued and used as vehicles for teaching and learning” (p. 14). Fostering High Expectations and Rigorous Instruction. Within this principle, educators should ensure the environment is academically rigorous and challenging while simultaneously considering different ways in which individuals learn. There should be 29 opportunities to use critical thinking skills, which fosters a growth mindset and provides chances to take academic risks. Inclusive Curriculum and Assessment. This principle highlights the need to bolster historically marginalized voices while providing opportunities to learn about power and privilege in the context of the learning environment and wider society. It also empowers students to be agents of social change and learn about others’ perspectives and experiences. Lastly, this principle works toward “dismantling systems of biases and inequities and decentering dominant ideologies in education” (p. 15). Ongoing Professional Learning. This principle emphasizes a constant reexamination of the adaptive process of teaching and learning. As a part of this principle, learners and instructors should: “sharpen a critically conscious lens toward instruction, curriculum, assessment, history, culture, and institutions” (p. 15). Study Purpose Using a CS-R framework to deliver thanatology education that reflects cultural humility is fundamental to educating the future health and human services workforce. However, little is known about how cultural humility is infused in death education at the undergraduate level in the U.S. Thus, this mixed method study aims to answer three research questions (RQ). At the postsecondary level: 1) How have culturally responsive-sustaining pedagogical principles been integrated into the delivery of postsecondary thanatology courses? (Qualitative) 2) Are there differences in topical offerings and instructor death anxiety across university (i.e., public vs. private), departmental (i.e., Social sciences and humanities vs. clinical), and instructor characteristics (i.e., early vs mid/late career stage)? (Quantitative) 30 a. I hypothesize that instructors teaching at a private institution will be less likely to offer topics on controversial issues, have less death anxiety than those at public institutions. b. I hypothesize that instructors teaching in the social sciences and humanities will be more likely to offer topics related to culture and funeral practices and have worse death anxiety than those teaching in clinical settings. c. I hypothesize that early career instructors will have worse death anxiety than those in mid/later career stage. No hypothesis for topical offerings as this is exploratory. 3) Do interviews with thanatology instructors help explain quantitative differences in topical offerings and instructor death anxiety? (Integration) Methodology This study utilized a convergent parallel mixed methods approach, which is a useful design for developing a more complete understanding of a topic (Cleland, 2017; Kajamaa et al., 2020; Kumar et al., 2019). A convergent parallel mixed methods approach is characterized by separate quantitative and qualitative data collection and analysis followed by a joint comparison and interpretation of both strands (See Figure 1.1.; Creswell & Plano Clark, 2019). In this study, quantitative data collection occurred before qualitative data collection and analyses were conducted separately, then joined together to integrate overarching results. This project was approved as exempt by Washington State University Institutional Review Board (#19592). Data and Sample Data for this work come from a larger project that focused on identifying and evaluating available university/college thanatology curriculum in the U.S. The research team conducted key 31 informant interviews to guide future directions for best practices in normalizing death education, identifying evidence-based interventions in thanatology, and increasing access and preparation for diverse students – especially those who will be confronted with death and grief as a regular part of their future careers in health and human services. Recruitment All land-grant universities, including tribal colleges and universities and historically black colleges and universities (HBCUs) were identified using the U.S. Department of Agriculture (2022) land-grant university designation. Universities/colleges that offer a Human Development and Family Sciences degree program, a degree likely to offer thanatology-related coursework, were identified using several sources (National Council on Family Relations, n.d.; Reifman et al., 2019). To identify universities with courses related to death and dying, I developed a systematic search strategy to locate each university’s schedule of classes for relevant terms (i.e., death, dying, loss, bereavement, thanatology). I refined this strategy, then trained undergraduate research assistants to execute it. If the university system did not allow for a term-based search, then we searched through relevant subject areas that would be most likely to host a death and dying related course (i.e., Gerontology, Human Development/Family Studies, Nursing, Psychology, Religion, Social Work, Sociology) across the last two academic years (Spring 2021-Fall 2022). In total, 178 unique universities and colleges were identified including 66 Land-Grant Universities, 35 Tribal colleges and universities, 19 HBCUs, and 97 universities with HDFS programs were identified (note: 39 universities were both land-grant and offered an HDFS degree, and some universities had multiple locations, which we counted as unique institutions, e.g., University of California is a system school with 10 different locations). Of those 178, 103 32 (58%) offered a course related to thanatology. Once a relevant course was found, we obtained the contact information for all instructors of the class and sent them a direct recruitment email requesting their participation in the two-phase study (80 direct recruitment emails were sent). If their email could not be located, an email requesting participation was sent to the department chair (73 department chair recruitment emails were sent). Lastly, participants were recruited via two study announcement posts on social media (i.e., Twitter) and posting to the Gerontological Society for America open forum, two months apart. Study Participants A total of 56 instructors (37% of total targeted) participated in the quantitative survey (Phase 1) of this study. A large majority of these participants were female (83.9%), White (94.6%), and middle career (46.4%) or senior academics (33.9%). Most instructors were teaching at 4-year public universities (76.8%) of varying sizes. Only 39% were teaching at a land-grant university or within an HDFS program. Nearly all courses were offered as an elective within a wide array of departments. See Table 1.2. for more information on participant, university, and course characteristics. Data Collection Eligible instructors/departments were contacted via email to complete an online survey through Qualtrics (quantitative; Phase 1). At the end of the survey, participants were asked if they would like to complete a 30–45-minute follow-up interview to share more about their experience teaching a thanatology course (qualitative; Phase 2). Phase 1: Quantitative Approach Prior to completing the survey, we obtained participants’ informed consent electronically. Overall, 56 instructors responded to the survey, answering questions related to their university 33 characteristics, course characteristics, topics offered in their course, demographic characteristics, and death anxiety (see Appendix A for full survey). Phase 2: Qualitative Approach Participants who agreed to participate in Phase 2 of the study were redirected to a new survey page to enter their contact information; this was to ensure anonymity in their responses to Phase 1 survey questions. Participants were then contacted via email to schedule their interview with research team members. Overall, 39 participants indicated interest in a follow-up interview and a total of 27 interviews were conducted (12 participants were lost to follow up). Nearly half (48%) participated in both phases of the study. The interview followed a semi-structured guide (see Appendix B), where at least one member of the research team facilitated the conversation with the participant; when possible, two members of the research team were present, where a lead-researcher was designated to conduct the interview and the other researcher was designated as a notetaker. The interview guide asked questions about the instructor’s course, perspectives on challenges and opportunities for death education, advice for future instructors, strategies for addressing diverse populations and content in their course, and course activities/assignments they find to be effective for teaching death and dying concepts/topics. Prior to the start of the interview, we obtained consent from participants and informed them they could skip any question, not answer any question, or end the interview if they chose to do so; this did not occur. With participants’ permission, all interviews were conducted and recorded via Zoom. Participant survey responses did not inform any part of the interview and were not connected to interview responses. 34 Data Analysis Data analysis was conducted in three phases: qualitative, quantitative, and integrative. Below, I describe the analytic approach in this order to reflect the design of a convergent parallel mixed methods approach with an emphasis on the qualitative strand. Qualitative Interviews were transcribed by research team members (e.g., undergraduate/graduate research assistants) then doubled checked to ensure quality and accuracy, as is best practice (McMullin, 2021). All interview transcripts were uploaded to Microsoft Word, and each was listened to/read to develop initial codes and themes, organized by the principles of CS-R, outlined above. Instructors were asked one specific question about how they include cultural content in their course (See Appendix B), but most cultural-related content came up naturally throughout the interview. Therefore, I used deductive coding methodologies (Azungah, 2018) to analyze the qualitative responses in accordance with the four principles of CS-R and the associated examples listed in Table 1.1. I also developed new codes inductively beyond the scope of the four principles of CS-R as apparent themes arose. Then, I presented the themes and subthemes to Author 2, who served as the second coder throughout the iterative data analytic process. We discussed themes and subthemes until we achieved a clear consensus of how to proceed with assigning codes to the text (Varpio et al., 2016). After determining themes, I coded all interviews, and the second coder checked all codes for agreement and then we met to discuss any discrepancies and come to a consensus on any disagreements. See Table 1.3. for the final coding scheme. Quantitative Analysis To answer RQ2, I conducted a series of basic statistical approaches to determine notable characteristics of universities, instructors, and classes/disciplines related to thanatology 35 education cross-nationally. Data from the survey was cleaned, calculated, and recoded for the purpose of this study. In the quantitative survey and semi-structured interview, participants indicated which department they teach their course, and these were dichotomized into either the Social sciences and humanities (i.e., Sociology, Gerontology, Anthropology, Religion, History, Human Development/Family Science) or clinical (i.e., Nursing, Social Work, Psychology/Brain Sciences), as these two disciplines often differ in their methodologies and perspectives (GALE, n.d.). Career stage was dichotomized as early (i.e., graduate student, assistant professor, or highest degree for < 7 years) and mid/late (i.e., associate, full, or emeritus professor, or highest degree > 7 years). Lastly, university affiliation was dichotomized as public (i.e., junior/community college, 2-year public, 4-year public) and private (i.e., 4-year private, religious institution). I utilized basic statistical approaches to analyze differences between groups (i.e., private vs. public universities, land-grant universities vs. regular, stage of academic career) on several metrics including topical offerings and death anxiety scores of instructors. Topical Offerings In the survey, 18 common course offerings were presented to participants, and they were asked to indicate the extent they cover each topic (Not at all, somewhat, in-depth, or may consider including in the future; see Table 1.4.). For the purposes of this study, response options were recoded whereas “Not at all,” “somewhat,” and “may consider including in the future” = 1 and “In-depth” = 2 to maintain large enough cell sizes to assess differences (see Table 1.5.). Chi-square tests were used to compare course offerings by groups (i.e., public v. private; social sciences and humanities v. clinical; early v. mid/late career). Death Anxiety 36 Death anxiety was assessed via a 15-item death anxiety questionnaire (DAQ) originally developed by Conte et al., (1982). This brief death anxiety assessment has validity and internal consistency (Cella & Tross, 1987; Jong et al., 2019). Participants indicate their agreement with the 15-items on a 3-point Likert scale (1=Not at all, 2= Somewhat 3= Always). This scale was sum scored where higher scores indicate higher death anxiety. Upon examination of the Q-Q plot and other tests of normality (Shapiro-Wilk test; .981, p < .515), death anxiety was assumed to be normally distributed so independent samples T-Tests were run to determine differences in death anxiety by characteristics (i.e., public v. private; social sciences and social sciences and humanities v. clinical; early v. mid/late career). Integrated Analysis After conducting analyses for qualitative and quantitative data, I integrated the two strands and interpreted the results together to answer RQ 3. Integration of qualitative and quantitative results is a key phase of mixed methods research and greatly increases the value of findings (Fetters et al., 2013). I utilized a side-by-side joint display to integrate and portray these results. Joint display is a method of data integration developed by Fetters and colleagues (2013) that brings together data via visual representation to elucidate new insights beyond the separate qualitative and quantitative results. To protect anonymity, the data from the qualitative interviews could not be connected to the specific quantitative survey responses. However, the university/college, department, and career stage of each participant is known from the qualitative interview, and I was able to connect that information to the more generalized findings by university/college type in the quantitative analysis, without reporting specific affiliations. For example, Participant 3 teaches in a sociology department at a 4-year public university so I can connect their qualitative responses to the generalized quantitative findings described above (i.e., 37 differences in death anxiety questionnaire in participants that teach at a public vs. private university). Results A total of 56 participants completed the quantitative survey about their thanatology class and demographic characteristics. Of those, 27 completed a semi-structured interview (45-60 minutes) about their perspectives, experiences, and challenges of teaching a death and dying related course in a postsecondary setting. Of these interviewees, 67% were mid/late career, 52% were teaching in a clinical department, 70% were teaching at a public university, and were employed across the country, as determined by census region (33% West, 30% East, 24% South, 19% Midwest). See Table 1.6. for a full demographic breakdown of interviewees. Below I present the qualitative results of the semi-structured interview, followed by the quantitative results and a joint interpretation. Culturally Responsive-Sustaining Education in Death and Dying (Qualitative Approach) After the reading, theme development and refinement, and discussion phase of the deductive content analysis, three of the four domains of the CR-S Education Framework were further split into subthemes (See Table 1.3.). In addition, three new themes were developed through inductive coding; “Doing your own work” (Theme 5), “Classroom Culture” (Theme 6), and “Desire to do more” (Theme 7). All seven, including subthemes, will be described below. Each quote is attributed to the participant number and their notable characteristics. See Table 1.7. for these associations. Welcoming and Affirming Environment (Theme 1) Overall, the theme Welcoming and Affirming Environment was characterized by suggestions and experiences for creating a classroom environment where students feel safe and 38 like they belong. These suggestions and experiences seemed both tangible and intangible. Thus, to reflect these different ideas, the first domain of CR-S, Welcoming and Affirming Environment (Theme 1), was split into two subthemes: treat classroom as a collaborative space, includes students in the creation of that space (Subtheme 1.1) and set standards, rules, and regulations for mutually agreed upon norms and expectations (Subtheme 1.2). Treat classroom as a collaborative space, includes students in the creation of that space (Subtheme 1.1). This subtheme manifested in several different ways. Instructors often emphasized the importance of approaching the class with authenticity and vulnerability to create a comfortable space for their students to learn and allow students to be vulnerable themselves. One shared: Having that vulnerability is, I think, hard for some professors, and it was something I struggled with a lot early on. I thought that it would diminish my credibility with my students…but in a class like this, I feel like it’s essential to establish that credibility so they [students] feel like they can share things. [#8, Clinical, Public, Early, West] Another instructor suggested they have better and more meaningful engagement from students in this course compared to others: …[students] are engaged in a different level than they are in some of my other classes, and I feel I get some sense of some sort of barrier that is nicely dissolved that makes them more willing to participate. We kind of feel each other’s humanness more in that class because of the topic. [#13, Clinical, Public, Mid/Late, Midwest] Lastly, instructors reported how much they learn from their students, which allows them to set the pace of the course. One instructor reported that their curriculum changes in response to what they learn from students, “The curriculum does sort of evolve year each, kind of in response to the stuff that I learn from the students.” [#3, Social Sciences and Humanities, Private, Mid/Late, Midwest]. Several also emphasized the importance of students setting the pace and allowing students to spend more time on a topic if there is more to unpack. 39 Instructors also stressed the importance of the physical space of the classroom. For example, they might specifically request a smaller classroom so the students are physically closer to each other, have moveable chairs so people can get into circles and small groups easier, and limit their class sizes so they can be more attentive to student needs. Set standards, rules, and regulations for mutually agreed upon norms and expectations (Subtheme 1.2). Many instructors emphasized the importance of dedicating time at the beginning of the semester to make sure students know what they are getting into in the class, such as disclaimers in the syllabus and low stakes introductory assignments to help get to know the students better. Several instructors reported using the first class to set ground rules and expectations with the students. One shared, “I take the first day to set the stage to make sure it’s clear to students that this is a safe space. I give them a poem that basically says invitation to a brave space.”[#8, Clinical, Public, Early, West]. Another instructor shared a different concrete strategy: On the first day everybody gets an index card with their name, major, why they are taking this class and anything else they would like to share…it helps me to learn their names but also helps me to be really mindful of certain topics that might be triggering. [#17, Social Sciences and Humanities, Private, Mid/Late, East]. Other course rules shared by instructors included: not apologizing for tears, allowing students to “pass” if they do not want to answer a specific question, following trauma-informed teaching practices, and allowing students choice and flexibility should they need it. Fostering High Expectations and Rigorous Instruction (Theme 2) Overall, the theme Fostering High Expectations and Rigorous Instruction was characterized by encouraging students to constructively engage with difficult topics and providing the opportunity for students to present to peers to hone skills in communication and working with others. To give proper attention to the suggestions for these themes, the second 40 domain of CR-S, Fostering High Expectations and Rigorous Instruction (Theme 2) was split into two subthemes: incorporate current death events and tough topics (Subtheme 2.1), and incorporate student led projects in the classroom to provide the opportunity to teach peers (Subtheme 2.2). Incorporate current death events and tough topics (Subtheme 2.1). Several instructors described incorporating COVID-19 into their class as a current death event. One shared “I think in the pandemic period, like Fall 2020, when I taught this, it was essential…it was a really important class to be teaching during that period there was a lot of death happening, and there were disparities.” [#27, Clinical, Public, Mid/Late, East]. Some even described adding in new and different assignments while teaching during the pandemic to highlight the disparities. Instructors also mentioned including seminal and public death-related cases in their course instruction, such as Brittany Maynard, Marlise Muñoz, and Terri Schiavo, illustrating the use of current (and landmark) death events. Quite a few instructors utilized class debates to teach tough and controversial topics, most commonly medical aid in dying (e.g., physician aided death). One instructor explained the benefits: I always include a debate on [medical aid in dying] …students are randomly assigned a side to argue, so some of them will have to argue against it but they are really for it. We do the debates in small groups then talk about the whole thing together. One reason I really value doing that, and will probably always include this assignment, is that so many students will say they’re now more familiar with the other side of arguments… or they gain more compassion for a side they weren’t initially in agreement with. It is just so important for their critical thinking. [#13, Clinical, Public, Mid/Late, Midwest]. Many instructors described covering a host of tough topics, including euthanasia, genocide, mass deaths, organ donation, suicide, stigmatized deaths, and violent deaths. Few instructors did not report focusing on tough topics. 41 Incorporate student led projects in the classroom to provide the opportunity to teach peers (Subtheme 2.2). Many instructors described an assignment that gave students the opportunity to present to peers. The most common type of presentation was group-based cultural presentations in which students chose a culture, different from their own, and presented on their funerary customs, beliefs, and grief/mourning practices. One instructor shared their process: We come up with a whole list of different culture or religious presentation ideas, then they get into groups of 5 or 6. Their responsibility is to stand up in front of the class and give a [presentation] for about 25 to 30 minutes. People have done Muslim, Native American, Indonesian, Zen Buddhism, Hinduism, Mexican, Egyptian, Asian American, Catholicism, Mormonism, Greek Orthodox, Jehovah’s Witness, Judaism, Scientology, Sikh, Atheism, LGBTQ+, and Voodoo. They come up with other ideas too. [#15, Clinical, Public, Early, West]. Some described other peer-facilitated events, like hosting a death café, leading a class discussion on an article, and or creating a product (i.e., personal scrapbooks, a podcast, infographics) shared with the class. One instructor described a “Death Faire” event that their students organized and executed on campus: They held this event [Death Faire] on campus and invited other students to learn. It was supposed to be a fun event…they did a bean bag toss and depending on what hole the bag went into that was how much your body part was worth on the black market…that was a way to basically destigmatize conversations about death and dying among college students. [#25, Social Sciences and Humanities, Private, Mid/Late, East]. Inclusive Curriculum and Assessment (Theme 3) The third domain of CR-S, Inclusive Curriculum and Assessment (Theme 3) was characterized by connecting instructional content with the lived experience of students, infusion of tangible experiences like field trips or guest lectures into course delivery to foster student connection to surrounding community and choosing and using resources that are written and developed by those with diverse perspectives. To reflect these three areas, the theme was split into three subthemes: utilize culturally specific examples within instruction and/or tangible 42 examples/resources (Subtheme 3.1), take field trips or have guest speakers related to course content (Subtheme 3.2), and use materials that represent multiple identities (Subtheme 3.3). Utilize culturally specific examples within instruction and/or tangible examples/resources (Subtheme 3.1). Many instructors described utilizing culturally specific examples and topics within their instruction including, but not limited to: African American, Buddhist, Chinese, Ghanian, Hindu, Hispanic, Intellectual/Developmental Disabilities, Islam, Japanese, Jewish, Korean, LGBTQIA+, Mexican, Tibetan, Trinidadian, and Vietnamese. One described how the class “look[s] at a couple of ancient religions in Mesopotamia and Egypt…including their perspectives on what happens after death, what the afterlife is life, what part of the person continues on after the body dies” [#10, Social Sciences and Humanities, Public, Early, West]. Another instructor shared the importance of including cultural content in their course: We are such a global world now, people need to be educated on these different cultures, or at least learn some kind of sensitivity to at least explore what others are going through, so that we can then in healthcare fields, we can do better by them. They deserve it, you know. I mean these people have customs, and they’re told they can’t do them, and that’s wrong. [#16, Clinical, Private, Mid/Late, South] There were many tangible examples and resources shared by faculty, including From Here to Eternity by Caitlin Doughty (book), The Farewell (movie), and Death and Bereavement Across Cultures by Parkes et al. (2015; textbook). Many instructors also described the importance of using diverse examples and imagery. One shared: It’s just always been part of my teaching practice to try and use diverse examples, to try to weave diverse religious doctrine…and different examples like imagery – different videos, Ted-Talk like stuff – I’m always kind of thinking about how to be diverse about it. [#6, Social Sciences and Humanities, Public, Early, East] Take field trips or have guest speakers related to course content (Subtheme 3.2). Taking field trips and having guest speakers were very common educational techniques 43 employed by thanatology instructors. Field trips were to a myriad of places, including a local death café event, cadaver lab, campus “death” walk, cemetery (regular and green burial), crematorium, funeral home, in-patient Hospice, medical examiner’s office, and mortuary. One instructor emphasizes the importance of “…getting [students] out of the classroom and into the community is a really great opportunity to deepen the learning” [#18, Clinical, Private, Mid/Late, Midwest]. Another approach was to invite guest speakers to share their lived experiences and different perspectives with students. Guest speakers included, but were not limited to, a bereaved person, bioethicist, death doula, grief therapist, homicide detective, Hospice workers (i.e., nurses, social workers, volunteer in Hospice Prison System), instructor from Latin American and Caribbean Studies, a medium, near-death experience survivor, organ donation expert, person with a terminal illness, and various religious leaders (i.e., Buddhist Monk, Christian Pastor, someone from a Temple). One instructor shared their philosophy on guest speakers, “It’s great to have a different voice and a different person in the room. It also gives you the opportunity to kind of expand the diversity of people that they’re learning from.” [#22, Clinical, Private, Mid/Late, East]. Another described how: …these are the kinds of professionals who students would never have an opportunity to meet in their life if they didn’t take this class. We have a homicide detective come in, a forensic anthropologist, palliative care nurse, a child life specialist…people who are in jobs that our students would never necessarily come into contact with, so they really learn a lot from folks out in the field doing the work. [#18, Clinical, Private, Mid/Late, Midwest] Use materials that represent multiple identities (Subtheme 3.3). Instructors described using a host of materials that represent multiple identities. Many examples were documentaries, films, non-fiction/fiction books, podcasts, poetry, popular media articles, scholarly readings, textbooks, and videos. One instructor shared, “I’m trying to be more intentional about choosing course materials that reflect different backgrounds and perspectives, choosing different 44 readings, podcasts, videos…I’m trying to make sure there’s a larger variety of voice in those materials” [#6, Social Sciences and Humanities, Public, Early, East]. But several also mentioned the challenges of finding diverse material. One instructor discussed their approach to including materials that represent multiple identities, “It’s really important when I’m putting together PowerPoints that I’m being inclusive in terms of imagery and language…it’s really important that folks in the class are seeing people in the imagery that look like them” [#23, Social Sciences and Humanities, Public, Early, West]. Another described their approach as follows: I want to make sure that there are different voices represented. If I’m going to show a video, for example, about a topic, I’m going to try to make sure that I’m doing some homework to find a video that does the teaching I need it to do but if there are two of those videos, and one of them is with a person from a majority background and the other one is from a minority background, I’m going to try to pick the minority background version of that video. I’m just trying to be a little bit more intentional about what the students get exposed to, and the kind of conversations we have during the semester and build topics about disparities into the course material more systematically. [#18, Clinical, Private, Mid/Late, Midwest] Ongoing Professional Learning (Theme 4) The final domain of CR-S, Ongoing Professional Learning, was the least mentioned theme by the interviewees. Overall, the theme was characterized by instructors reporting engaging in meaningful and regular diversity, equity, and inclusion training, and taking ownership and accountability for mistakes, and using them as an opportunity to learn and grow. A few instructors mentioned applying what they learned at a university diversity, equity, and inclusion (DEI) training to their classroom. One explained, “I’m learning about this a lot in my DEI training at the University…let’s say I have one older learner in my class, I don’t always want to depend on them [to tell us about all older learners]” [#23, Social Sciences and Humanities, Public, Early, West]. A couple instructors mentioned learning from, and owning, their mistakes. One shared, “I try to own my mistakes quickly [in class]. I make them every class, 45 I say ‘I wish I hadn’t said this, and this is why’ …I try to model that” [#9, Clinical, Public, Early, West]. “Doing Your Own Work” (Theme 5) This theme was characterized by tangible suggestions for maintaining instructor health and well-being and emulating and encouraging that behavior in students. Several shared the importance of engaging in formal therapy and counseling, “I am pretty open with my students that I’m actively in counseling…I honestly see that as a benefit and a way to teach some of those practices to my students” [#1, Clinical, Public, Early, South]. Others reported the importance of having someone trusted to talk to, “check in with yourself…have your own backup, whether it’s your therapist, whether it’s a colleague or anybody you can just chick in with, should you need it" [#23, Social Sciences and Humanities, Public, Early, West]. Similarly, quite a few instructors mentioned how important it is for them, and their students, to take care of themselves and invest in meaningful self-care. One shared: I have learned to prioritize self-care during the semester [of teaching death and dying] …I try not to load up on other stressful things…I want to be sure there’s going to be some time in my schedule to pay attention to the students in ways that I know are important to them. [#18, Clinical, Private, Mid/Late, Midwest] Another instructor explained the value of self-care and included some tangible examples: You have to have some kind of self-care practice yourself and stick to it…I think it’s imperative that you have a very good self-care practice, and by that, I mean you have to move your body, and you have to exercise, and you have to spend time in nature. You have to mostly try to eat healthy, and I mean meditation? Oh, my God! [#16, Clinical, Private, Mid/Late, South] Instructors also recommended sharing university, local, and national resources, like the National Suicide Hotline or opportunities for mental health first aid training. Others included disclaimers on their syllabus to let students make an informed decision about their participation in the class. 46 Trigger warnings were also given to allow students to determine if certain topics may be too difficult to discuss in the class setting. Classroom Culture (Theme 6) Classroom culture was characterized by considering the overall culture of the class such as the background of students in the class, and the greater geographic area (e.g., town, city, state), as assets for teaching and learning. That is, the classroom environment was an opportunity to learn about diversity and culture together. As one instructor explained: We have such a diverse student body, my students are diverse in many ways…they’re diverse culturally, ethnically, religious backgrounds, and age-wise. It’s not uncommon for me to have students in their very early twenties and students in their mid to late sixties. So, the perspectives, the experiences about end-of-life are very vast. [#23, Social Sciences and Humanities, Public, Early, West] Leveraging the vast experiences of students was allowed, but as one instructor shared, “I don’t want to depend on my students to bring their knowledge about their diversity. I need to do my research, and I invite people to comment and [share] but I don’t expect it” [#24, Clinical, Public, Mid/Late, South]. This theme also captured instructors’ acknowledgement of their own identity and its impact on the classroom. One instructor shared, “I’m a middle-aged white guy, and so I can use my guest speakers intentionally to try to bring in different kinds of voices and backgrounds and experiences which helps diversify the learning experience for the class” [#18, Clinical, Private, Mid/Late, Midwest]. Others reported how their identity impacts the classroom; for example, “For me, being Brown, and not white, there’s a very natural opening there to share…and talk about different cultures or cultural approaches” [#13, Clinical, Public, Mid/Late, Midwest]. Another instructor, who was born in another county, shared how their identity, as well as students’ identity, influences the classroom; they encouraged students to bring their story into the 47 classroom, “How do you ask critical questions about your history and how you celebrate and what rituals you have? That is important for me” [#14, Clinical, Public, Mid/Late, Midwest]. Desire to Do More (Theme 7) Instructors expressed a desire to do more in their classroom because of their own experience with minimal death and dying resources appropriately showcasing diverse and cultural content. For example, one instructor articulated the goal as “[f]inding the way of making it a little less – white-feeling, white-European-centric. Finding the right way to do that has been challenging just because of funding the right materials out there” [#6, Social Sciences and Humanities, Public, Early, East]. Another reported, “I feel like there’s not a lot of great resources…and that makes it a little more challenging” [#22, Clinical, Private, Mid/Late, East]. Some also reported challenges of finding appropriate and diverse imagery; for example, “Sometimes it is not easy to find [diverse content] because there’s not a lot of imagery out there, especially if you are trying to be very cognizant of copyright…it’s just a lot” [#3, Social Sciences and Humanities, Private, Mid/Late, Midwest]. They also had ideas and intentions for doing things differently in their class. One shared, “I’m thinking of doing a course trailer…I want students to understand ‘this is what we’re doing, this is what we’re going to learn.” [#8, Clinical, Public, Early, West]. Another shared a specific intention, “Next time I teach [Death and Dying Course], I want to be sure that African American funerary industries are better represented in the course material” [#26, Social Sciences and Humanities, Public, Mid/Late, South]. One instructor also shared their feelings about wanting to do better the next time they teach this course, “I presented [specific non-dominant culture] as an anomaly, and the kind of typical white experience as the norm and I want to make sure I don’t do that again, right? But we’re all learning” [#9, Clinical, Public, Early, West]. 48 Differences in Topical Offerings and Instructor Death Anxiety by Characteristic (Quantitative Approach) Below I report notable differences in the quantitative analyses for topical offerings and death anxiety scores by instructor characteristics of interest. Direction of association were determined by interpreting graphical representations for each analysis. Topical Offerings The most common topics that were covered in-depth were grief, bereavement, and mourning (91% of instructors covered topic in depth), cross-cultural issues (80%), end-of-life care and treatment (80%), funeral practices (80%), and understanding reactions to death (80%). Professions in thanatology (14%), death positivity movement (27%), and death systems (30%) were topics covered least frequently. Based on chi-square tests of independence statistics, instructors teaching in a clinical setting were significantly more likely to cover death and grief in children in-depth than people teaching in the social sciences and humanities (χ2 = 4.48, p = .034); instructors teaching in the social sciences and humanities were significantly more likely to cover understanding reactions to death in-depth than those teaching in a clinical setting (χ2 = 4.99, p = .026). Those teaching at a private institution were significantly less likely to cover death anxiety in depth than people teaching at a public institution (χ2 = 4.80, p = .028). Instructors in mid/late career stage were significantly more likely to cover grief, bereavement, and mourning (χ2 = 5.67, p = .017), and understanding reactions to death in-depth than those in the early career stage (χ2 = 5.78, p = .016). See Table 1.8. for more information on differences in topical offerings by characteristic. 49 Death Anxiety Of the three independent samples T-Tests that were run, only one was significantly different. I found that instructors teaching at a private institution, therefore likely a religious or liberal arts institution, were significantly more likely to have lower death anxiety than those teaching at a public university (t (54) = .299, p = .029). See Table 1.9. for more information on differences in death anxiety by characteristic. A Convergent and Integrative Analysis The quantitative and qualitative findings were examined in tandem to compare and integrate each strand of results. The qualitative findings were used to help explain differences in the quantitative findings. In Table 1.10., each significant finding from the quantitative results is displayed next to illustrative quotes from interviewees with the characteristics associated with the quantitative finding. Then, I jointly interpreted these findings as concordant, discordant, or inconclusive. The integrative results for this mixed methods analysis are best disseminated through side-by-side joint display (McCrudden et al., 2021). Mixed results emerged from the integrative analysis. There was concordance between qualitative and quantitative findings in regard to clinical instructors being more likely to include topics related to children’s grief and death, discordance in the finding that mid/late instructors being more likely to cover grief, death and bereavement, and inconclusive results for instructors in private institutions having significantly less death anxiety than those in public. Discussion This study employed a convergent parallel mixed methods design to assess the state of culturally responsive-sustaining education strategies utilized by thanatology instructors cross-nationally (Qualitative), determine if there were quantitative differences in topical offerings and 50 instructor death anxiety by university, departmental, and instructor characteristics (Quantitative), and examine how qualitative results may help explain the quantitative differences (Integration). Instructors described both concrete and intangible suggestions in line with all CR-S principles compiled in Table 1.11. Overall, a majority of instructors reported covering topics related to grief, bereavement, and mourning, cross-cultural issues, end-of-life care and treatment, funeral practices, and understanding reactions to death. However, few reported covering topics related to professions in thanatology, the death positivity movement, and death systems. These differences suggest a limited focus on issues rooted in the culture of “death avoidance” present in America (Wilson et al., 2022). By including topics related to professions in thanatology and death positivity, instructors can work to move the needle from a death “evasive” society, toward a more “death accepting” society. Delivering such content using the principles of CR-S can ensure this is done with cultural humility at the core. To my knowledge, this study was the first to apply the CR-S framework to death education. Interviews with instructors reflected the four main components of this framework: (1) creating a welcoming and affirming environment, (2) fostering high expectations and using rigorous instruction, (3) including and (4) engaging in ongoing professional learning. However, there were three themes that inductively appeared in the interviews beyond the established domains of the CR-S framework. These themes, “doing your own work”, classroom culture, and desire to do more point to places where the CR-S framework did not capture all the ways cultural humility, or content, may come up in thanatology related education. Future work should consider expanding this framework to include components of self-care (of instructors and students), the importance of culture of the classroom, institution, and greater community, and support for 51 educators as they navigate the formation of a culturally responsive-sustaining classroom environment. Based on deductive and inductive analysis of the interviews and supplemented by survey data findings, there are several key takeaways: (1) a need for improved resources and training, (2) more opportunities for wisdom sharing and collaboration, and (3) approaching and emphasizing thanatology through a multidisciplinary lens, (4) implications for instructor death anxiety. Improved Resources and Training A major finding of this study is that instructors felt there was a lack of appropriate cultural resources and imagery for use in thanatology classes. Instructors indicated a desire to include more cultural content in their classes, but also felt there were not enough high-quality resources available to do so. Other researchers have described similar findings; for example, teachers in primary schools in the U.S. felt that addressing death was an important topic in the health-related classes but felt they lacked proper training and resources for implementing these topics, especially for delivering content that included cultural or religious approaches to death (Ramos-Pla et al., 2023). It is imperative that death educators have access to a myriad of diverse resources (e.g., academic articles, podcasts, popular media articles, films, videos) that represent a multitude of identities and voices including, but not limited to, different races and ethnicities, religious backgrounds, sexual and gender identities. Wisdom Sharing Quantitative results indicated that those in mid/late career stages, compared to early career, were significantly more likely to cover the topics of grief, bereavement, and mourning, and understanding reactions to death in depth. However, qualitative analyses suggest that these 52 topics were covered ubiquitously by both. Many instructors reported bringing their own lived experience into the classroom to share with students, both as a modality of teaching and as a tool to build safety and belongingness in the classroom. Because of experience, mid/late career instructors may have more death-related experiences to bring into the classroom, impacting the course content and delivery. However, as thanatology-related courses are generally taught by those with an aptitude or interest for the subject, wisdom sharing may be a universal experience of thanatology instructors. A recent study explored the effectiveness of intergenerational conversations on teaching death and dying concepts to university students; they found there were mutual benefits for both the students and older adults (Masters et al., 2022), indicating this may be an effective pedagogical approach for teaching thanatology to university students. Thus, sharing life experience with students may be an effective teaching tool. It would also benefit instructors of any career stage to learn from other instructors. All instructors, regardless of their university affiliation or career stage, would likely benefit from an organized multidisciplinary consortium of death educators to share ideas, experiences, and challenges to improve their courses. Thanatology through a Multidisciplinary Lens As a multidisciplinary field, it is critical to enhance this as a strength in thanatology courses and to ensure classes are designed with this in mind. Results suggest that instructors teaching in the social sciences and humanities were more likely to cover understanding reactions to death than those in clinical disciplines. Qualitatively, there were no direct mentions of covering this topic in their classes but interviewees in the social sciences and humanities described teaching about cultural approaches to death (e.g., funeral practices, approaches to grief, cultural customs) more often than those in the clinical disciplines. The social sciences and 53 humanities generally approach topics through a historical, philosophical, and social lens (Wilson, 2023) and current findings suggest this holds true for death and dying. Clinical disciplines could benefit from integrating this approach into their teaching, so students have a more holistic understanding of death, rather than just a medical event to be prevented at all costs (Hetzler & Dugdale, 2018). During the COVID-19 pandemic, providers that used a holistic approach of care for the dying were influential in enabling the mourning process for families (Hernández-Fernández & Meneses-Falcón, 2021). This holistic understanding is instrumental to delivering clinical care that is considerate of the whole person including their culture, lived experiences, family ties, and wishes (Bryk et al., 2022). On the other hand, integrated results suggested that clinical disciplines include content on children, grief, and death more than those in the social sciences and humanities. Courses in clinical disciplines may be specifically designed for students in health and human services, who will likely work with children or families in their future careers. For example, health professionals are likely to interact with children following a death in the family (Kentor & Kaplow, 2020). Therefore, they should be trained with knowledge about developmental differences in responses to death and dying. Infusing a developmental approach may also be beneficial for students learning about death and dying in the social sciences and humanities because their work, or personal lives, may involve interacting with children, or the families of children. Understanding these developmental differences in responses to death and dying benefits providers (Kentor & Kaplow, 2020), parents, and children (Chachar et al., 2021). Taken together, these findings reflect a recent theoretical framework, The Holistic Self and Mindset (Phan et al., 2024), on integrating death education into lifespan development studies. This framework asserts that a “unification” of social, philosophical, and psychological 54 viewpoints of death education may “provide grounding for effective teaching a holistic understanding of the subject contents of life and death” (Phan et al., 2023, pg. 1). Thus, using a multidisciplinary approach to death education would be mutually beneficial for instructors and students in both clinical and social sciences and humanities disciplines. Future work should evaluate the effectiveness of a holistic approach that incentivizes and utilizes the social, philosophical, and psychological viewpoints in teaching death education within several disciplines. Instructor Death Anxiety In accordance with my hypothesis, instructors at a private institution had significantly lower death anxiety than those at a public institution. While religious affiliation was not obtained in the current study, these findings replicate a large literature base that asserts those who identify as religious generally have lower death anxiety (Jong et al., 2017). Interestingly, instructors at private institutions were significantly less likely to cover death anxiety as a topic in-depth in their class, potentially suggesting that instructors with lower death anxiety may not recognize the value of the topic, therefore inadvertently omitting it from their teaching. Unfortunately, there were no qualitative insights related to death anxiety so we cannot extrapolate these quantitative differences further. However, teachers in private and religious institutions have been found to have significantly better attitudes toward death education than those in public or non-religious institutions (Herrero et al., 2020). These findings suggest that the mission, values, and climate of the affiliated institution may impact course content and delivery in death education. More research in this area is merited to understand mechanisms related to instructor death anxiety, course delivery, and student perspectives about the benefits of the class. 55 Limitations and Future Directions To my knowledge, this is the first study to explore how culturally responsive-sustaining education principles have been integrated into thanatology courses at the postsecondary level. However, this study is not without limitation. First, there was a relatively low sample size in the quantitative survey, limiting generalizability of results. However, the qualitative results provide a rich in-depth understanding of the state of culturally responsive-sustaining education approaches integrated into death and dying courses, reaching thematic-saturation (Braun & Clarke, 2019). Second, the sample was majority white and female, which is reflective of the state of academia (National Center for Education Statistics, 2023). Future work should consider purposive sampling to include the perspectives and experiences of a more diverse sample and the need to diversify the pool of future educators. Third, this study is only from the perspectives of instructors of death and dying courses in postsecondary settings. It would behoove the field to also investigate the student perspective and assess thanatology knowledge on a wide range of topics. While collection information about the geographic location of instructors was collected, it is beyond the scope of the current study to analyze differences in geographic location. However, since 2008, there have been widening gaps in pre-mature mortality by political affiliation with Republican counties having higher rates of mortality than Democratic counties (Warraich et al., 2022). Some states, generally Republican-leaning, have introduced legislation that limits the content postsecondary educators can cover in their classroom, including critical race theory (Miller et al., 2023). Between the diversity, equity, and inclusion education content bans and national debates over bodily autonomy (e.g., abortion, medical aid in dying), instructors in some states may be heavily restricted in their inclusion of cross-cultural or controversial issues in their death education courses. Future work should assess whether associations between political 56 climate and student knowledge and attitudes toward end of life have differential impacts on student learning and retention. Conclusion Death education is rare, with most recent estimates suggesting only 10% of colleges/universities offer a specific class on death education. Being exposed to death education early, and often, can prepare both those going into the health and human service workforce (professionally), and individuals in general (personally) when it comes to death and dying. This preparation is essential for the growing diverse aging population, who will need culturally informed care throughout their lives, and at their death. Even more unique than death education, is death education delivered with cultural humility. Through a mixed method analysis, this study provides tangible suggestions for integrating cultural humility into thanatology courses using the principles of the culturally responsive-sustaining pedagogical framework. Findings indicate there is a need for a greater availability of resources that reflect multiple identities and voices, greater reliance on wisdom sharing, and the use of a multidisciplinary approach to teach death education more effectively and improve the learning experience for students. Future work should explore the effectiveness of a multidisciplinary approach to death education at the postsecondary level. Evaluating the challenges and difficulties experienced by thanatology instructors is also critical for improving and advancing the field. To reduce and eliminate existing inequities in the EOL experience, it is essential that the health and human service workers of tomorrow, are taught death education with cultural humility, today. 57 MANUSCRIPT TWO: DEATH LITERACY EDUCATION, TRAINING, AND CURRICULUM INTERVENTIONS FOR HEALTH PROFESSIONALS: A SCOPING REVIEW Originally written for submission to Advances in Health Education 58 Introduction As a result of the recent global pandemic, death and dying has been in the public spotlight unlike ever before. Starting in Spring of 2020, death tolls were published daily, and news cycles were constantly covering death-related topics. With increased media coverage, long-existing inequalities in the death experience became more visible– they were unearthed for the general population to see. Prior to the pandemic, researchers documented the inequalities experienced by people with historically marginalized identities (e.g., people of color, those living in rural areas), including higher rates of premature mortality (Best et al., 2019; Graham & Pinto, 2018) and lower engagement in end-of-life (EOL) care planning (Orlovic et al., 2019; Ornstein et al., 2020; Wang et al., 2015). Furthermore, research shows that marginalized populations are less likely to have a “good death” experience (Corpora, 2022; Meier et al., 2016). The concept of a good death is highly dependent on cultural, religious, and societal values (Cain & McClesky, 2019; Corpora, 2022). In Western cultures, a “good death” is generally characterized by preferences for a specific dying process: being pain-free; maintaining religious and treatment preferences, emotional well-being, dignity, and a trusting relationship with health care provider; and ensuring the presence of loved ones (Meier et al., 2016). However, the term “good death” can have unintended, deleterious effects on dying individuals and their loved ones because not achieving a “good death,” or a death consistent with individuals’ preferences and goals, means that decedents had a “bad death.” While this may be the reality, this dichotomy can exacerbate grief responses of decedents’ survivors (Wilson et al., 2019). Thus, I will use the term equitable death from this point forward. The typical characteristics describing a good death described earlier are a good place to start, but the definition of an equitable death is highly individualized, modifiable, and based on cultural context and life experiences. It is helpful to conceptualize the idea of an equitable death within life course theory. 59 Life Course Theory Life course theory posits that historical forces and culture, timing of life events, linked lives (i.e., the idea that an individual’s life is embedded in and influenced by a large network of relationships), and individual human agency influence lifespan development (Elder, 1992). This theory emerged as a way to understand the mental, physical, and social health and development of individuals and identify factors that shape their lives (Hutchison, 2014). Life course theory has been used to study health disparities, elder abuse, and other topics related to aging (Cheng & Solomon, 2014; Hanson et al., 2016; McDonald & Thomas, 2013). However, to my knowledge, it has yet to be applied specifically to death and dying. History and Culture In life course theory, history and culture are the conditions and events one lives through. These could include geopolitical events (e.g., war, 9/11), economic phases (e.g., recessions), and social and cultural experiences (e.g., Black Lives Matter, Women’s Suffrage; Elder, 1992). An individual’s history and culture greatly influence EOL preferences and expectations. This might entail cultural or religious preferences, or preferences developed from a culmination of life experiences (Gire, 2014). For example, an individual whose parent died when they were young may have more death anxiety than others; they may be more death avoidant and less likely to engage in advance care planning. Because lived experience (i.e., personal history) and cultural or religious preferences differ widely, the intersections of these concepts weave complex stories that have differential outcomes from person to person. Lived experiences related to death, loss, and/or grief may have undue influence on an individual’s propensity to engage in conversations about death and dying (Amjad et al., 2014). Timing 60 Timing is a concept that includes three types of time: 1) individual, or chronological age, 2) generational, age or cohort groups (e.g., generations), and 3) historical time, or the societal or large-scale events (e.g., technological advances such as internet) (Elder, 1998). Timing is also related to life events known as transitions (e.g., moving, getting married, having a baby, death; Elder, 1992). The timing of a death affects both the dying individual and their loved ones; if a death occurs earlier in the lifespan (i.e., off-time) or is unexpected, it may be more traumatic or difficult to process (Keyes et al., 2014). Off-time deaths can have deleterious effects on survivors, including prolonged grief, anxiety, substance misuse, and high mortality rates (Keyes et al., 2014; Mirzaei et al., 2019). While on-time or expected deaths are difficult for survivors, unexpected deaths can create tumultuous conditions for family members, especially among individuals who have not had conversations related to their EOL wishes; family members may be left scrambling or fighting about funeral planning or body disposition, while simultaneously grieving (Becker et al., 2022; Robinson et al., 2021). Linked Lives Dying and death do not occur in a vacuum; rather, they occur in the presence of others. The concept of linked lives emphasizes that lives are interdependent and connected on several levels (Elder, 1998). These connections influence every stage of development across the life course (Carr, 2018). Linked lives play a large role in the death system, or the network in which an individual’s relationship to death and mortality is affected by society and culture (Kastenbaum & Costa, 1977). The death system includes the people (e.g., doctors, clergy, health care providers), places (e.g., hospitals, funeral homes, cemeteries), times (e.g., Memorial Day, religious traditions, anniversaries, memorials), and objects/symbols (e.g., skills, language, 61 words) that interact and influence the dying, death, and bereaved experience (Kastenbaum & Costa, 1977). Linked lives encapsulate family involvement in EOL decision-making, as well as the relationship with a trusted healthcare provider (Note: I will be using healthcare provider and health professional interchangeably in this paper). In bereaved family members, a lack of a safe and respectful relationship with a healthcare provider can lead to higher levels of regret about the EOL experience of their deceased loved one (Okimura & Hayashi, 2023). A poor relationship with a healthcare provider can also increase costs at EOL and cause more harm to the dying individual (Caswell et al., 2015; Sathianoanthan et al., 2021). Agency Lastly, agency is a concept that describes the human ability to make and execute decisions (Elder, 1998; Williams et al., 2021). Human agency is a complex and somewhat controversial concept (Pleasants, 2018), but for the sake of this review, I will consider human agency as the ability to make decisions that influence the EOL experience. Regarding EOL care, one can strive to exert their agency to ensure their preferences are known and followed. In most cases, an individual is the ultimate decision-maker when it comes to their EOL care preferences and experiences; however, this experience is closely linked to life experience and death preparedness (Lall et al., 2021). For example, cumulative dis/advantage is the idea that unequal aging occurs because of a lifetime of inequalities and experiences (Abramson, 2016). The perceived agency to make these choices depends on other concepts within life course theory, as displayed by the looped wheel in Figure 2.1. Before there is agency to make decisions related to EOL, there must be engagement in death preparedness, both informally and formally. 62 Death Preparedness Death preparedness can include both informal and formal actions of discussing, writing down, or thinking about EOL preferences or wishes. Informal death preparedness involves having EOL conversations (e.g., verbally communicating wishes, desires, and needs regarding EOL) with family, friends, or healthcare providers (Brighton & Bristowe, 2016). While having conversations with loved ones or healthcare providers is important, engaging in formal death preparedness, such as writing one’s wishes into a document (e.g., completing an advance directive, living will, and do not resuscitate order) is an essential component of death preparedness (Shin Tan et al., 2019). Advance care planning (ACP) is the process of identifying and documenting one’s values, goals, and preferences related to future medical care (Sudore et al., 2017). However, a survey conducted by the Kaiser Family Foundation, revealed 73% of Americans do not have their wishes written down; when asked to explain why, two main reasons emerged: they have not gotten around to it or they never considered it (Hamel et al., 2017). This indicates that people are either not thinking about their EOL plan or more likely, they might not know where (or how) to start the process. The likelihood of engaging in advance care planning conversations, both with family and clinicians’, changes as function of age, with older individuals more likely to have these conversations than younger individuals (Hamel et al., 2017). When individuals engaged in death preparedness and planning earlier in the lifespan, their ability to have conversations about others’ EOL plans and formally create their own plans improved (Tripken & Elrod, 2017). In the United States, people generally avoid the topic of death (Carr, 2012). In one survey with 795,909 respondents, more than half reported having had a serious conversation about their EOL wishes and care with their loved ones (Yadav et al., 2017). However, another study reported only 1 in 10 people have had an EOL conversation with a healthcare provider (Hamel et 63 al., 2017). Though the prevalence of having EOL conversations with healthcare providers is very low, most people indicated they would feel very comfortable (66%) or somewhat comfortable (26%) talking about EOL care with their provider (Hamel et al., 2017). This gap may exist in part because health professionals receive very little education and training regarding EOL care communication in their professional programs (Jeffers et al., 2021). To close this gap, educational interventions aimed at improving death literacy among health professionals are needed. Death Literacy Death literacy is a set of knowledge and skills that make it possible for one to obtain, understand, and act upon EOL and death care, or the services related to planning and execution of services post-death (e.g., funerals, body disposition, death-related policy; Noonan et al., 2016). High death literacy constitutes being able to apply knowledge and skills related to death and dying into practice and reflects the following constructs: practical knowledge, experiential knowledge, factual knowledge, and community knowledge (Leonard et al., 2021). Practical knowledge includes how to talk to someone about dying, death, and grief and includes some of the physical tasks associated with EOL (e.g., bathing, feeding, administering injections). Experiential knowledge refers to wisdom and skills obtained from direct EOL experiences of death education. Factual knowledge refers to knowledge about the death system and how to plan for dying well, options for caregiving, and death. Community knowledge encapsulates knowledge of services and other EOL supports that exist within a community and how to access these services. Evident from these different types of knowledge, death literacy transcends the individual level to the familial, community, practitioner, and health care provider levels, as well as the greater societal level. There have been advances in measuring death literacy (Graham- 64 Wisener et al., 2022), yet little is known about interventions related to improving constructs of death literacy in health professional education. State of Death Literacy in Health Professional Education Typically, death-based decision-making does not occur in isolation, nor does the event of death. Health professionals from a wide range of specialties play a role in the death system. Typically, medical and nursing specialties are the first that come to mind; however, other specialties are key players in the death system, including pharmacy, counseling, and social work. A scoping review found that implementation of death education training is highly varied and follows a competency-based knowledge, attitudes, and skills framework and mostly relies on brief, skills-based workshop interventions (Patterson et al., in progress). There has been no comprehensive work to evaluate the state of death education in the wider health professions in more than thirty years (Dickinson et al., 1992). Given the advances in medical technology that result in longer, yet sometimes sicker lives, this is problematic; in addition, the aging baby-boomer population will cause immense pressure on healthcare providers and the death system, with little governmental support (Warraich et al., 2017). Also, having better death literacy as a provider helps with coping and grief in their own personal lives (Povedano-Jimenez et al., 2021). It is essential to foster appropriate grief processing and coping in healthcare providers as patient deaths can have long lasting personal or professional effects (Chen et al., 2018). Providing education on these topics can reduce the personal, emotional, physical, behavioral, and spiritual toll faced by our health care providers (Roche et al., 2022). Some insights can be garnered by examining death education efforts in other fields. For example, death education courses improved openness to examining death, increased understanding of death, and reduced fear of death among counselors-in-training (Harrawood et 65 al., 2011). In another study, clinical experiences with patients at EOL improved nursing students’ personal ideas about death (Gül et al., 2022). Death literacy among fifth-year psychology students improved via an online intervention (Vivekananda et al., 2021). It is worth noting that only one of the these interventions took place in the United States (Harrawood et al., 2011), while the other studies were conducted in Australia (Gül et al., 2022) and Turkey (Vivekananda et al., 2021). Collectively, these interventions suggest that death literacy can be improved among health professionals, but the state of culturally-informed death education training opportunities for health professionals in unknown, particularly in the United States. Cultural Humility and Death Education Cultural humility in health care is the ongoing process of recognizing diversity and power imbalances among individuals, groups, or communities and includes self-reflection and lifelong learning to aid in respectful and supportive interactions with others (Foronda et al., 2016). Recently, the field called for a shift from cultural competence to cultural humility as cultural competency may not address the implicit racist attitudes and behaviors of providers (Lekas et al., 2020). Thus, it is imperative that health care providers (e.g., social workers, nurses, physicians, pharmacists) receive adequate training to initiate and/or facilitate EOL conversations, as they will inevitably encounter dying patients with diverse backgrounds. As part of the larger death care system, health professionals may directly influence their patients’ dying experience. According to Foronda and colleagues (2016), cultural humility within physical and mental health sectors includes five key competencies: 1. openness to engaging in cross-cultural interactions and new ideas, 2. self-awareness of practitioners who must be aware of their own strengths, limitations, values, and beliefs, 66 3. egoless practitioner who is humble and modest and believes all people are equal, 4. supportive interactions with others that result in positive exchanges, and 5. self-reflection and critique, promoting engagement as a continual process of introspection and personal reflection. Cultural humility is a key form of social justice; active engagement from clinicians and health professionals is a necessary path forward toward fostering safe and trusting environments for patients and their families. In general, counselors, doctors, and nurses who display traits of cultural humility have better client relationships, greater patient satisfaction, and greater trust (Hook et al., 2016; Kibakaya & Oyeku, 2022). However, clinicians frequently express difficulty conducting ACP conversations (Fulmer et al., 2018), to the point of avoiding conversations entirely, especially with certain racial and ethnic groups (e.g., African American, Hispanic, Asian, AIAN), non-native English speakers, and those with certain religious beliefs (Ashana et al., 2022). One potential avenue for bolstering health professional readiness to converse about death and dying preparedness is to infuse death and dying content into postgraduate education, training, and curriculum. Little is known about interventions aimed at improving death literacy in postgraduate health professional training/education. Thus, the purpose of this scoping review is to answer three research questions: 1. What interventions have been implemented in postgraduate health professional education settings to improve death and dying training? 2. From the identified studies, how has cultural humility been incorporated into these interventions? 67 3. To what degree were death literacy components included in death education interventions? Addressing these questions will help elucidate the state of rigorous death and dying education and training interventions that has occurred in five major health professional education settings (e.g., medical school, nursing, social work, pharmacy, and counseling). It is also important to uncover the key components of these interventions (i.e., activities, implementation strategies, modality of delivery, length) to inform future work in this area. Methodology This scoping review was guided by the Joanna Briggs Institute (JBI) Scoping Review Methodology and used the Preferred Reporting Items for Systematic Reviews and Meta-analysis Protocols (PRISMA-ScR) extension guidelines (Tricco et al., 2018) for reporting (See Appendix D). These guidelines include twenty essential reporting items for a scoping review. Designed to understand how death and dying education concepts have been incorporated into health professional education, I followed the six-step scoping review methodology developed by Arksey and O’Malley (2005) which includes: 1) Identifying the research question, 2) Identifying relevant studies, 3) Selecting studies, 4) Charting the data, 5) Collating and reporting findings, and 6) Consultations with stakeholders and potential knowledge users. Identifying Studies Eligibility Criteria To be included in this review, the studies needed to: 1) be peer-reviewed in a credible academic journal, 2) include an intervention, curriculum infusion, or training aimed at improving education on a topic related to death and dying in postgraduate health professional settings, 3) be published between January 2013-October 2023, and 4) be written in English, and 5) occur in the 68 United States. Duplicates and studies that reported on interventions occurring outside of required training/education of the health professional were excluded (i.e., if the intervention occurred in a continuing education setting or as part of a workplace training). Search Strategy The search strategy was developed based on current literature, input from my committee, and consultation with a university librarian. A preliminary search was conducted in CINHAL, PsycINFO, and PubMed, as these were the university-recommended databases for Human Development and Medicine. Based on the initial search results and preliminary review, with the blessing of my committee and consultation with a university librarian, I used CINHAL, MEDLINE, and PsycINFO for the final search, as PubMed contained more clinical, physiological, and biological content; MEDLINE allowed for a more focused and refined search with additional options for field selection unavailable in PubMed. See Table 2.1. for a list of search terms and limiters applied to each database. Further search filters including U.S. specific, and English studies were applied to pre-screen articles out of inclusion to aid in study selection. The search in CINHAL and MEDLINE Complete occurred concurrently, as these databases are both housed in EBSCOhost. Study Selection Screening of the articles occurred using Covidence, a software that was designed to manage and streamline the screening and data charting process for systemic/scoping reviews (Kellermeyer et al., 2018). A total of 239 articles were uploaded into Covidence (MEDLINE & CINHAL Complete, n= 78; PsycINFO, n = 161). This software automatically removed duplicates (n =24), an important initial step of the screening process. 69 After removal of duplicate articles, 215 articles went through a title screening. One reviewer screened titles and abstracts using established inclusion and exclusion criteria and removed 125 articles as they were irrelevant to the study. Then, two reviewers independently screened the abstracts, and when needed the full text, of the remaining 90 articles. Reasons for exclusion were recorded. Any uncertainty or disagreement through the study selection process was discussed as a team until a decision was made; when necessary, another reviewer acted as a third reviewer to resolve disagreement. A total of 74 articles were excluded because they did not meet established criteria (See Figure 2.2. for breakdown of reason for exclusion). Upon completion of an abstract review, a full-text review of all eligible articles was conducted (n = 16). Each article was reviewed and coded by the same two reviewers of the abstract screening step. The references for each article were also reviewed to ensure a complete review, and no relevant additions were found. The “team” remained the same throughout the screening process, with me as the lead reviewer, another PhD candidate as the second reviewer, and an associate professor as the third reviewer. Data Charting Data charting, an iterative process of scoping review that involves extracting, analyzing, and presenting the data (Francis, 2022), occurred during the full-text review phase of analysis. The charting form included the details of the article (e.g., author, year, title, journal of publication) and details of the study (e.g., health profession, population, study design, methodology, death literacy domain, outcomes; see Appendix C). Data charting occurred within Covidence, and each reviewer reviewed the first ten articles independently and met to develop a consensus on charting elements and resolve any inconsistencies and make necessary adjustments to the data charting form. Then, each reviewer read and charted each study as the primary 70 reviewer to ensure accuracy (Li et al., 2022). Lastly, we met to discuss and address any discrepancies until a consensus was reached. Content Analysis As a part of the data charting process, a deductive content analysis was completed to elucidate themes and subthemes related to the death literacy constructs. As part of the data charting process, the articles (i.e., the analytic study sample) were coded in accordance with the four death literacy constructs: practical, experiential, factual, and community knowledge. Deductive content analysis relies on an established model or theory and moves from general to more specific subthemes (Elo & Kyngas, 2008). Each article was read by reviewer one and two in accordance with the established deductive content analysis procedures to develop subthemes related to each death literacy domain described above (Bengtsson, 2016; Elo & Kyngas, 2008). Then, reviewer one compiled and presented results to reviewer three to discuss and refine subthemes; once subthemes were agreed upon, reviewer one coded each included article and reviewer three spot-coded to maintain reliability (Braun & Clarke, 2021). Reporting Results Data was extracted from Covidence into Microsoft Excel to aid in summarizing, collating, and reporting results. Consultation with Stakeholders Consultation with End-of- Life Washington (EOLWA) occurred to discuss the implications of the findings. This agency specializes in education, advocacy, and support for those navigating EOL options and choices. EOLWA frequently provides education and consultation to the healthcare community, particularly focused on death with dignity, also known 71 as medical aid in dying. Consultation occurred through email and telephone correspondence with this organizations’ Medical Director, who holds a Doctor of Osteopathic Medicine. Results Study Characteristics A total of 16 studies implemented interventions focused on death and dying in healthcare professional education settings. Most of these studies occurred in the South (n = 6), followed by Midwest (n = 5), Northeast (n = 3), and West (n =3), with only one study occurring in multiple geographic locations (Atayee et al., 2018). Most studies occurred within Medical School settings (n = 8), followed by Nursing (n = 6), Social Work (n =2), Counseling (n = 2) and Pharmacy (n = 1). One-third of these studies were interdisciplinary in nature and included more than one health profession (i.e., Medical/Nursing; Social Work/Counseling). Several studies (n =7) explicitly covered cultural content and topics as a part of their intervention. Only four studies used theory to frame their intervention, including Adult Learning Theory (Day et al., 2015), Experiential Empathy Theory (Erlich et al., 2023), Experiential Learning Theory (Head & Smith, 2016), and Terror Management Theory (Thieleman & Cacciatore, 2019). See Table 2.3. for a description of included studies. Intervention Components Intervention components included didactic learning (n = 13), experiential learning (n = 9), reflective writing (n = 9), peer/expert discussion (n = 7), and standardized patient encounters/simulations (n = 6). Didactic learning included typical classroom or online learning as lecture and independent reading of assigned material. Experiential learning included a wide range of experiences and tasks including applied activities such as case studies, a visit to an art museum, games (Go Wish, an advance care planning game), writing a personal obituary and planning a funeral, interviewing people with and without advance directives; hands-on activities 72 were also considered as experiential learning, like completing advance directives with houseless people, providing hands on care to a dying person and their families, and facilitating a group counseling session on grief. Reflective writing was the act of exploring feelings and attitudes toward death and dying concepts. It could also include processing experiences of death and dying in the classroom. Peer/expert discussion often occurred in tandem with experiential learning or standardized patient encounters/simulations and included small or large group discussion with classmates and one-on-one or panel discussions with experts. Standardized patient encounters/simulations are specifically designed learning activities that follow a standardized process and utilize a trained patient for skill development on predetermined outcomes. Below, I outline notable intervention components and findings by each healthcare education setting (i.e., medical, nursing, social work, counseling, and pharmacy). See Table 2.4. for more information about intervention components and key findings for each study. Medical The eight studies that occurred in medical school settings employed a wide range of designs, from quasi-experimental to qualitative. The only quasi-randomized control trial in the analytic sample occurred in the medical school setting. Studies that included medical students utilized several different intervention components to deliver material including didactic learning, discussions, standardized patient encounters, experiential learning activities, and reflective writing. Didactic learning was usually delivered as synchronous lecture-based learning (Day et al., 2015; Erickson et al., 2015; Nussbaum et al., 2019; Sinha et al., 2015; Strano-Paul et. al., 2015). Learning through discussion occurred as peer discussion (Day et al., 2015; Kerr et al., 2020; Nussbaum et al., 2019; Sinha et al., 2015) or discussion with physicians and faculty (Wechter et al., 2015) to talk about reactions, feelings, and thoughts on the topics at hand. Four 73 studies utilized standardized patient encounters to deliver material (Day et al., 2015; Erickson et al., 2015; Sinha et al., 2015), yet only one study utilized an older adult as the trained patient (Nussbaum et al., 2019). Four studies used experiential learning activities such as completing a personal advance care plan (Erlich et al., 2023), completing interviews with family and caregivers of hospice patients (Sinha et al., 2015), direct caregiving experience for a dying individual in a home hospice setting (Stano-Paul et al., 2015), and direct interaction and communication with a dying person and their family (Wechter et al., 2015). Four studies in the medical school setting utilized reflective writing as a way of processing and debriefing (Erlich et al., 2023; Wechter et al., 2015) or as a method of data collection (Nussbaum et al., 2019; Strano-Paul et al., 2015). Two studies were interdisciplinary in nature and included nursing students in the intervention and analysis (Erickson et al., 2015; Sinha et al., 2015). Nursing The six studies that occurred in undergraduate or graduate nursing school settings employed a wide range of study designs, from quasi-experimental to qualitative. Three studies occurred in a required class, two in an elective, and one as extra volunteer training. Four studies utilized didactic learning as the method of intervention information delivery (Erickson et al., 2015; Glover et al., 2017; Loerzel & Conner, 2016; Sinha et al., 2015). Four studies in the nursing school setting used standardized patient encounters/simulation as an approach of intervention delivery. This included helping a simulated family member make decisions about goals of care (Erickson et al., 2015), caring for trained actor as a “dying patient” (Lippe & Becker, 2015), attending a simulation about completing advance directives before a live workshop (Nash et al., 2016), and conveying bad news to a standardized patient (Sinha et al., 2015). Experiential learning was used in four interventions for nursing students. These 74 experiences included a case study related to palliative and end-of-life care (no additional details; Glover et al., 2017), applied activities like writing an obituary, planning a funeral, and interviewing people with and without advance directives (Loerzel & Conner, 2016), hands on activities like attending an advance directive workshop and assisting houseless individuals with filling out an advance care plan (Nash et al., 2016), and going to an art museum with a death and dying related collection (Sinha et al., 2015). Three nursing interventions used reflective writing as the tool for death and dying content delivery, often as a supplement to other pedagogical approaches, including watching a contemporary film (Wit) and writing a reflection (Glover et al., 2017), writing thoughts, feelings, and reactions to course material (Loerzel & Conner, 2016), and reflective on an immersive experience (Nash et al., 2016). Only two studies in nursing used discussion with peers to engage with the content (Loerzel & Conner, 2016; Sinha et al., 2015). Social Work Two studies occurred in social work elective courses. One study used a quasi-experimental approach and the other used a mixed method approach to deliver course material via didactic learning in the form of recorded lectures and independent reading (Head & Smith, 2016). Another study used peer discussion with the addition of mindfulness activities to meaningfully engage with the material, they also held a panel discussion with bereaved parents (Thielman & Cacciatore, 2019). Both studies included reflective writing as a part of intervention delivery (Head & Smith, 2016; Thieleman & Cacciatore, 2019). One study occurred in an interdisciplinary setting with counseling students (Thieleman & Cacciatore, 2019) Counseling Two studies occurred in counseling. One used a quasi-experimental method (Thieleman & Cacciatore, 2019) and the other used a case study (Servaity-Seib & Parikh, 2014). The case 75 study included didactic learning over eight in class meetings and eight weeks of experiential learning in the form of facilitate a group therapy session on grief (Servaity-Seib & Parikh, 2014). The other study used reflective writing, peer discussion and a panel discussion with bereaved parents (Thieleman & Cacciatore, 2019). Pharmacy There was only one study that occurred in a pharmacy education setting. This study used a quasi-experimental approach and occurred in an elective course (Atayee et al., 2018). This study used didactic learning and an experiential learning approach known as script concordance testing that presents case studies to students and they develop a treatment plan (Atayee et al., 2018). Inclusion of Cultural Content Seven studies included cultural content as part of their intervention, with a range of strategies. One study specifically focused on houseless individuals (Nash et al., 2016), who share similarities in beliefs, patterns, and values, thus exemplifying a cultural group (Ravenhill, 2016). Most studies used a didactic learning module focused broadly on the death and dying beliefs of cultural and religious groups (Head & Smith, 2016; Loerzel & Conner, 2016). Glover and colleagues (2017) reported infusing cultural topics throughout the entirety of the didactic learning modules. Another study had an alternative assignment for students to complete that focused on cultural views of mourning, should they not want to complete the regular assignment (Thieleman & Cacciatore, 2019). Day and colleagues (2015) utilized culturally specific examples as their standardized patient encounter, while Wechter and colleagues (2015) focused on how culture, religion, and ethics influence EOL decision-making. Studies that did not report any information related to cultural or religious content in their intervention were assumed to not 76 include this content. Death Literacy Domains Each study was examined to determine which death literacy domain(s) were evident in intervention descriptions; factual, practical, experiential and community. The studies focused the most on factual (n = 15) death literacy, followed by practical (n = 12), experiential (n = 10), and community (n = 2) death literacy. See Table 2.5. for a breakdown of death literacy domains by study and Table 2.6. for more information about the elements of each death literacy domain. Factual Factual death literacy was the most prevalent theme and covered a wide range of topics. Seven studies discussed factual information related to grief, bereavement, and coping (Day et al., 2015; Glover et al., 2017; Head & Smith, 2016; Loerzel & Conner, 2016; Servaity-Seib & Parikh, 2014; Sinha et al., 2015; Thieleman & Cacciatore, 2019). Five studies discussed pain/symptom management (Atayee et al., 2018; Day et al., 2015; Glover et al., 2017; Sinha et al., 2015; Strano-Paul et al., 2015), EOL decision-making/EOL Options (Day et al., 2015; Erickson et al., 2015; Nussbaum et al., 2019; Sinha et al., 2015; Wechter et al., 2015), though only one specifically covered medical aid in dying (Day et al., 2015), and information related to caring for the dying (Atayee et al., 2018; Glover et al., 2017; Head & Smith, 2016; Lippe & Becker, 2015; Strano-Paul et al., 2015). Four studies discussed cultural and religious differences (Head & Smith, 2016; Glover et al., 2017; Loerzel & Conner, 2016; Wechter et al., 2015) and issues related to ethics and legality (Head & Smith, 2016; Loerzel & Conner, 2016; Nash et al., Nussbaum et al., 2019). Three studies presented factual information related to advance care planning (Day et al., 2015; Erlich et al., 2023; Nussbaum et al., 2019). Two studies covered factual information related to death demographics (Loerzel & Conner, 2016; Nash et al., 2016), 77 the dying process (Head & Smith, 2016; Sinha et al., 2015) and traumatic deaths (Head & Smith, 2016; Thieleman & Cacciatore, 2019). Only one study reported covering information about the role of the health provider (Nussbaum et al., 2019), organ donation (Day et al., 2015), nuances of the caregiver experience (Kerr et al., 2020), or self-care for the health provider (Head & Smith, 2016). Practical Practical death literacy was the second most common death literacy domain, evident in 12 studies. Practical death literacy solely occurred via communication building skills. This included communicating with a dying patient (Glover et al., 2017; Head & Smith, 2016; Loerzel & Conner, 2016) and with family (Lippe & Becker, 2015; Strano-Paul et al., 2015). Practical death literacy also included communicating with houseless individuals while aiding in completion of advance directives (Nash et al., 2016). Communication strategies also addressed learning how to deliver difficult news (Day et al., 2015) or how to talk to someone about their end of life wishes (Nussbaum et al., 2019). Other studies focused on how to work, and communicate with, grieving individuals (Kerr et al., 2020; Servaity-Seib & Parikh, 2014). Experiential Experiential death literacy was the third most common death literacy domain, evident in 10 studies. Conducting an advance care planning conversation or completing an advance care plan was a common experiential exercise (Erlich et al., 2023; Loerzel & Conner, 2016; Nash et al., 2016). Of these, one occurred in a real-world setting (Nash et al., 2016), and two were personal experiences (i.e., filling out your own advance care plan or planning your own funeral; Erlich et al., 2023; Loerzel & Conner, 2016). Another experiential death literacy element is direct caregiving related experiences, evident through providing care to dying individuals in a 78 hospice setting (Strano-Paul et al., 2015; Wechter et al., 2015) and or providing care in a standardized patient simulation (Lipper & Becker, 2015). Conducting EOL related conversations, without filling out an advance care plan, occurred in two studies, both in a simulated experience (Nussbaum et al., 2019; Sinha et al., 2015). Lastly, listening to and hearing about the experiences of grieving people occurred in two studies, both in a real-world setting. One involved listening to and talking with bereaved parents (Thieleman & Cacciatore, 2019), while the other involved facilitating a grief counseling group (Servaity- Seib & Parikh, 2014). Interestingly, no study covered more than one experiential death literacy topic. Community Community death literacy related learning only occurred in two studies. One study was focused on awareness of available community services and referring grieving families when appropriate (Servaity-Seib & Parikh, 2014). The other study focused on knowledge of community services and supports available to houseless individuals (Nash et al., 2016). Discussion There were 16 articles published between January 2013 to October 1, 2023 that implemented a death and dying intervention in one of five (i.e., medical, nursing, social work, counseling, and pharmacy) healthcare education settings. Findings of this review suggest that most published research focuses on the education of medical and nursing students, with few studies focusing on social work, counseling, and pharmacy. Many intervention activities were deployed in these studies, including didactic learning, peer/expert discussion, experiential learning, reflective writing, and standardized patient simulations. A recent review of healthcare professionals’ experiences of EOL care education found that allied health professionals (e.g., social workers, pharmacists, counselors) received very little 79 education in EOL related topics (Magee & Lusher, 2023). This aligns with my findings, as educational interventions for allied health professionals made up only 25% (n=4) of the studies included in the review, with only one study occurring in a pharmacy setting. Pharmacists, both in community and hospital settings, play a vital role in EOL care, particularly related to pain management. At the EOL, pharmacists administer medication, give education and medication counseling to caregivers, and even engage in direct patient care (Dooms, 2023), yet pharmacists receive inadequate or nonexistent EOL related education and training (Pruskowski et al., 2021). Thus, future work should focus on improving EOL education for allied health professionals, especially for pharmacists. Pharmacists are linked to the lives of patients and their families (Kamimura et al., 2020) and are integral in improving their EOL experience, particularly for historically marginalized individuals (Prieto-Lobato et al., 2023). When it comes to EOL care planning documentation, both allied health and clinical healthcare professionals working in the field emphasize the importance of a multidisciplinary approach (Kuusisto t al., 2023; Magee & Lusher, 2023). This approach allows for easier and more frequent communication, but barriers remain in utilization of a multidisciplinary approach in real world settings (Carter et al., 2023). The current review found that 25% (n=4) of the studies utilized an interdisciplinary approach; two included both medical and nursing students, while the other two included social work and counseling. Evidence suggests that interprofessional health education programs are an effective approach for teaching how to deal with medication errors (Jung et al., 2020), managing diabetes (Do et al., 2021), and improved recognition and definition of roles on a healthcare team (Keshmiri et al., 2021). Therefore, providing more interprofessional education programs for teaching and learning about the end of life could be a cost-effective approach (Nguyen et al., 2019) that improves patient and provider 80 outcomes. Relatedly, there is evidence that using a social determinants of health framework and leveraging interdisciplinary partnerships to teach students about healthcare inequities can have immense positive impacts, both immediately and in the long term (Holton et al., 2023). Future work is needed to close the gap between interdisciplinary health professional EOL education and training, to ensure translation in practice. Many of these studies occurred in the South and Midwest, as defined by the U.S. Census Bureau (2019). According to Med School Insiders (2023), of the 154 allopathic (MD) medical schools (excluding the four in Puerto Rico) in the contiguous U.S., 35% are in the South, 24% in the Northeast (though half of these are in one state, New York), 23% in the Midwest, and 16% in the West. Therefore, the geographic location of the included studies could be due to a higher concentration of these programs in the South. To my knowledge, at the time of this review, there is no such list or prevalence tracking for nursing, social work, counseling, or pharmacy programs. As death and dying can be a politically charged topic (Le Theule et al., 2018), future work should examine death education interventions across political and geographic locations to understand opportunities and barriers for delivery death education to future healthcare professionals. Incorporation of Cultural Humility in Included Studies Almost half of the studies included cultural content in their interventions, but there was substantial variation. Some studies had didactic cultural content infused across the intervention, while other studies had it as its own module or included it into a case study or other practical work. A recent study focused on perceptions of nursing and medical students regarding attitudes related to their own death and dying and found that students felt lingering discomfort about providing spiritual care to their patients at the end of life (Stephenson et al., 2023), pointing to a 81 need for more education on religion and spirituality. While culture was mentioned in almost half of the included studies, there was a paucity of information about the specific topics included in the interventions. Improving cultural humility of health care providers is key for improving health outcomes across the board. Recent work developed for educators for integrating cultural humility into medical curriculum suggests making students feel safe, contextualizing cultural humility into topics, collaborate with other health experts, and be conscientious of language (Solchanyk et al., 2021). Health professional educators should consider using these strategies when implementing a death education intervention in their curriculum. However, further research is needed to assess the effectiveness of these strategies. Effective Intervention Components and Rigor There were a variety of pedagogical approaches utilized by the studies in this review, including didactic learning, peer/expert discussion, experiential learning activities, reflective writing, and standardized patient simulations. Most studies utilized didactic learning to introduce relevant material to the participants. Often, reflective writing was used in tandem with didactic learning or as a follow up to process experiential learning activities. Reflective writing is a low-cost, low-effort intervention strategy that has been shown to help cope with patient death (Trivate et al., 2019) and process grief and death (Borgstrom et al., 2016). Standardized patient simulations are a key pedagogical approach to teaching in health professions (Hinzmann et al., 2023), yet few utilized this as an intervention activity. Another review found that standardized patient simulations are a safe way to improve medical students’ competence in death and dying, though the rigor of included studies was poor (Wong et al., 2023). No study reported a negative or adverse effect on learning because of the intervention. Many reported significant increases in the outcome of interest (Atayee et al., 2018; Kerr et al., 82 2020; Lippe & Becker, 2015; Nussbaum et al., 2019; Servaity-Seib & Parikh, 2014; Sinha et al., 2015; Thieleman & Cacciatore, 2019) or movement in expected direction (Day et al., 2015; Erickson et al., 2015; Erlich et al., 2023; Glover et al., 2017; Head & Smith, 2016; Loerzel & Conner, 2016; Nash et al., 2016; Strano-Paul et al., 2015; Wechter et al., 2015). However, the studies employed a broad range of designs to measure outcomes of interest. Most studies in this review were single site, non-randomized studies with a small sample size. Learning evaluations were conducted via pre and post testing of knowledge and skills. Future work should integrate a reflexive observational-based evaluation to measure learning outcomes, which is a key assessment strategy (Kogan et al., 2017). Only one study used a quasi-randomized control trial as their methodological design (Day et al., 2015), while many utilized quasi-experimental and a few qualitative methodologies. All approaches have their pros and cons, but future work should prioritize multi-site, randomized controlled trials to determine efficacy of pedagogical methods of teaching EOL topics to health professionals. Domains of Death Literacy and Topics Unsurprisingly, factual death literacy was the most common domain of included interventions. The domain of factual death literacy may be a “low hanging fruit” when it comes to implementing death education interventions. While it is important for health providers to be well versed in the factual aspects of death and dying, there is a need for improvements in the practical and experiential domains. Practical death literacy occurred in 75% of the included studies but almost exclusively covered communicating with dying individuals, families, or other care providers. Focusing on communication with dying people is very important, as many healthcare providers report feeling unprepared and uneasy engaging in these conversations (Bergenholtz et al., 2019). Experiential death literacy occurred in almost half of the studies, most 83 often occurring in a real-world setting with real patients. Experiential learning immersions in a real-world death and dying settings tend to have profound impacts on nursing students (Glover et al., 2017). Comparing the efficacy of simulation and real-world experiential learning activities is a key next step for future researchers in the death education space. Community death literacy was only present in two of the 16 studies. Advances in community death literacy are key for integrating cultural humility into this content. It is of utmost importance that health providers be familiar with community resources, services, and supports to provide well-rounded care for their patients (Kiran et al., 2020). This may be occurring via “hidden” curriculum in the education of health professionals (Sarikhani et al., 2020), but concrete and explicit training on available community services for dying people and their families is needed. Limitations and Future Directions This study is not without limitation. First, the search for this study was only conducted in three databases (i.e., CINHAL Complete, MEDLINE complete, and PsycINFO). A search in other databases could yield additional articles describing an intervention or curriculum infusion focused on death and dying in health professional education settings. Second, this review only included studies that took place in the U.S. At the examination stage of the review, we excluded studies that were conducted outside of the U.S.; a majority took place in Turkey (11), and China (5). See Table 2.7. for full breakdown of non-US excluded studies. Future work would benefit from including non-U.S. studies in a review, as many countries have published a host of studies on this topic. Health professional education programs in the U.S. would benefit from reviewing, culturally adapting, and integrating these results when appropriate. Third, this review only included five key health professionals. Future work should consider evaluating death education interventions in professions like physical, occupational, and speech therapy, among others 84 involved in EOL care. Lastly, a multitude of intervention components were used but methodological rigor was lacking. Thus, the results of this review are limited by the methodological rigor and intervention information shared by the authors of the included studies. It would behoove authors to be more explicit about intervention components, including the activities, length, and modality, key information for evaluating implementation of effective programming (Durlak & Dupre, 2008). Conclusion Enhanced education in practical, experiential, and community death literacy of health professionals is key to improving the end-of-life experience of all people. This paper describes interventions and curriculum infusions focused on death and dying in health professional education settings. Most interventions that were identified occurred in medical and nursing student settings with fewer in social work, counseling, and pharmacy settings. Improving factual death literacy was most common, yet several focused on practical and experiential, very few focused on community death literacy. It is critical to include death education in the training of our health care professionals, delivered with cultural humility, to improve their readiness, ability, and skill in working with dying people, families, and their personal response to death. Researchers should consider developing and implementing a multicomponent interdisciplinary death education intervention to enhance EOL related skills of health professionals. Interventions should be developed with cultural humility at the core and include topics such as self-care for the provider and community-based services and support available in the area, two important topics largely excluded from the current review. Doing so will benefit the experience of healthcare workers, healthcare seekers, and future healthcare needers. 85 MANUSCRIPT THREE: HEALTHCARE PROFESSIONALS’ INFLUENCE ON OLDER ADULT’S END-OF-LIFE EXPERIENCE AND PLACE OF DEATH: A LATENT CLASS ANALYSIS Originally written for submission to Journal of Applied Gerontology 86 Introduction Death and dying are universal, and long-existing inequalities at the end-of-life (EOL) were exacerbated, and highlighted, during the COVID-19 pandemic (Lundberg et al., 2023; Oh et al., 2022). Life experiences, socioeconomic positions, and access to care have far-reaching implications on inequities in morbidity and mortality (McGowan & Bambra, 2022; Wong et al., 2020). Premature mortality is defined as death that occurs before the average age of death in a certain population (NCI, n.d.). While overall premature mortality rates have steadily declined over time, racial inequalities have expanded (Shiels et al., 2017). As of 2017, American Indian/Alaskan native population have the highest premature death rate in the United States, followed by Black individuals (Best et al., 2019; Bundy et al., 2023). There are substantial disparities in mortality between Black and White people living in the United States (U.S.), where White people live on average 5.6 years longer than Black people (Hill et al, 2023). Other demographic characteristics and factors contribute to premature mortality, too. For example, living alone can be a risk factor for ill health, and increased risk of disease and an earlier death, which is even more problematic when individuals do not have adequate access to services and supports (Abell et al., 2021; Wu et al., 2022). About one-third of people 60 years of age and older live alone in the U.S (Pew Research Center, 2019). In natural disasters, such as the Chicago heat wave of 1995 or the European heat wave of 2003, older adults that lived alone had the highest rates of mortality (SAMHSA, 2017). There are also significant spatial inequalities that contribute to premature mortality in the U.S. (Vierboom et al., 2019). People living in Appalachia or in the American South have the lowest life expectancies in the U.S. (Fletcher et al., 2023; Singh et al., 2017), compared to people living on the East or West coasts. The economic disadvantage experienced in Appalachia and the American South contribute to poorer 87 health (Marshall et al., 2017; MDC, 2017). Similarly, non-White individuals are more likely to reside in the American South than White individuals (Moslimani et al., 2023), suggesting cumulative disadvantage. Relatedly, residents of states that elected to expand Medicaid access following the 2010 Affordable Care Act have better healthcare access, improved health outcomes, and are more likely to engage in preventative screenings than residents of states that did not expand Medicaid (Romero & Ponomariov, 2023). Thus, existing policy, and the associated political landscape, may influence regional differences in health and mortality. In addition to regional differences in health and mortality, there are differences in EOL experience by race/ethnicity. Black Americans, compared to White Americans, are more likely to request and receive more aggressive and invasive treatments near the end of their life, possibly due to a lifetime of experiencing racism in institutional settings, resulting in provider mistrust (Ornstein et al., 2020). Cultural preferences for Black and Hispanic Americans suggest family and friends are preferred caregivers, as opposed to receiving care from palliative care or hospice employees/volunteers (Rosario-Ramos et al., 2022). Hospice, a specialized type of palliative care that focuses on fostering peace, comfort, and dignity with an emphasis on pain and symptom control, is an EOL option shown to improve a host of outcomes for the patient, informal caregiver(s)/family, and society (Kavalieratos et al., 2016; Luta et al., 2021). Hispanic Americans tend to emphasize the role of family and religion in EOL care and thus might be more hesitant to engage in hospice use (Cardenas et al., 2022). Similarly, individuals living in the Deep South are far less likely to utilize hospice, even more so for non-White individuals living in this area (Turkman et al., 2019). This disparity may be accentuated by a dearth of affordable and available hospice services (Hutson et al., 2020). Not only where one lives, but how one lives influences EOL service use; living alone at the end-of-life can introduce barriers to accessing 88 care and increase anxiety about not being able to die at home (Abedini et al., 2020; Hanratty et al., 2013). Regardless of the circumstances in which one lives, everyone deserves to die a death that is in concordance with their hopes, wishes, and values. The idea of a “good death” is highly individualized and somewhat controversial (Smith & Periyakoil, 2019), but it generally involves four main themes: having your preferences followed, maintaining a pain-free status, having your loved ones present, and having your preferences and goals respected (Corpora, 2022; Krikorian et al., 2020; Meier et al., 2016). To summarize, the idea of a “good” death is a death that is congruent with an individual’s hopes, wishes, and preferences. Another way to conceptualize a “good “death is by using the Theory of a Harmonious Death (Hing & Mak, 2019), which is a new etymological reframe from “good” death to resolve a common critique of dichotomizing death as either good or bad. The Theory of a Harmonious Death consists of seven elements: death awareness, hope, comfort, control, connectedness, preparations, and completion (Hing & Mak, 2019). This paper will focus on the elements of comfort, control, connectedness, and preparation. Comfort consists of a death with minimal pain, both physically and emotionally. Comfort care that addresses the causes and presentations of pain is essential for a harmonious death (Hing & Mak, 2019; Sholjakova et al., 2018). Control refers to individual autonomy for decision-making and includes being respected and being informed about their condition, particularly from their health care provider (Hing & Mak, 2019). Connectedness reflects the need for maintained social relations with loved ones and acknowledgement of religious preferences and beliefs (Hing & Mak, 2019; Rego et al., 2020; Seppanen et al., 2023). Lastly, preparation for death means receiving care that is congruent with one’s preferences and making body dispositions and funeral preferences known (i.e., advance care planning [ACP]; Hing & Mak, 2019). Engaging in ACP, formally (i.e., writing wishes down 89 in official documentation) or informally (i.e., having conversations with loved ones or a provider), is a potential step toward achieving a harmonious death. Health professionals are instrumental in ensuring their patients are engaging in ACP but only 1 in 10 individuals had a conversation about EOL with their healthcare provider (Hamel et al., 2017). Engaging in ACP is a complex health behavior influenced by many factors, such as healthcare utilization, health provider trust, and socioeconomic position (Ashana et al., 2019; Nouri et al., 2020; Tilburgs et al., 2018). There are significant differences in EOL planning among individuals with lower income and lower levels of education (Orlovic et al., 2021); additional disparities exist among Black and Hispanic individuals, who have far lower rates of formal ACP behaviors, compared to non-Hispanic White individuals (Hamel et al., 2017; for simplicity, in the remainder of this manuscript non-Hispanic White individuals will be referred to as just “White”, same goes for non-Hispanic Black individuals, as “Black”). There are differences in survival expectations among these groups, which may partially explain the disparity (Lou & Carr, 2022). Controlling for subjective life expectancy, or beliefs about one’s future survival, Black and Hispanic older adults have significantly lower rates of ACP, compared to non-Hispanic White older adults. Those who perceive at least a 50% chance of surviving until the age of 80 are significantly more likely to have informal discussions about EOL care than those who perceive less than a 50% chance of surviving to age 80 (Lou & Carr, 2022). Relatedly, those who report being uncertain about their survival are significantly less likely to have engaged in formal ACP (Lou & Carr, 2022). Also, individuals who live alone, compared to those who live with other people, are less likely to have a preferred place of death or have discussions around EOL care planning with their healthcare provider (van Doorne et al., 2021). 90 Healthcare providers play an importance role in the health, life, and death of individuals. Healthcare providers can include physicians, nurses, emergency medical technicians, care aides, pharmacists, social workers, chaplains, and counselors, among others. Positive patient relationships with healthcare providers have been shown to lead to better patient outcomes, medication compliance, and health literacy (Leppee et al., 2015; Olaisen et al., 2020;), particularly among vulnerable populations like people who are uninsured, non-English speaking, or immigrants (Kamimura et al., 2020). This relationship becomes even more salient at EOL, as trust and respect become critical aspects of care. Collaboration between health providers, informal caregivers, and the dying individual is a potential path to achieving a death congruent with preferences and expectations. However, little is known about the influence of health providers’ involvement and its relation to place of death, or where the individual is pronounced dead; it is even less clear among diverse groups of people. Place of Death Place of death is commonly used as a metric of quality EOL care (Driessen et al., 2021) and is associated with a “good,” or not so good, death (Collier & Broom, 2021). Place of death is normally categorized into residential and institutional categories with better quality associated with death in non-institutionalized settings (i.e., one’s home). However, using place of death as a proxy for a good death assumes that a “good” death occurs at home and a “bad” death occurs in an institutional setting, which is not always the case; “bad” deaths can also occur at home, particularly if home is not the preferred place of death (Hoare et al., 2022; Valentino et al., 2023). Some individuals may prefer to die in a hospital setting. For example, non-White individuals have a strong preference for death in a hospital setting (Boyce-Fappiano et al., 2021). Direct inquiry from healthcare providers about preferences for place of death is associated with 91 patients achieving their preferred place of death (Ali et al., 2019). Similarly, having formal ACP documentation improves the likelihood of dying in one’s preferred place of death. For people who have ACP documentation, upwards of 75% die in their preferred place of death (Abel et al., 2013). Transitions to the hospital near EOL can have deleterious effects on individuals, including increased disability, injuries, and worsening function, particularly for individuals with impaired cognitive status (Gill et al., 2015). Compared to patients that died at home, individuals who die in the hospital experienced more physical and emotional distress and had poorer quality of life (Binda et al., 2021; Kinoshita et al., 2015). Also, caregivers for individuals who died in a hospital were at higher risk for prolonged grief disorder and higher caregiver burden (Kinoskita et al., 2015; Wright et al., 2010), compared to caregivers of individuals who died at home. Healthcare utilization tends to increase in the last six months of life, with increased emergency department use and physician visits, with even higher rates of use for people who died in the hospital (Hill et al., 2019; Wang et al., 2023). People who died in a hospital setting had higher median healthcare costs in the last six months of life than people who died at home (Hill et al., 2019). While the likelihood of having a home death is increasing overall (CDC, 2020), this is occurring at a slower rate for non-White individuals. For instance, between 2012 and 2020, more Black and Hispanic decedents died in the hospital compared to white decedents (Mayan et al., 2022), though this could be due to existing preferences. People with low socioeconomic position have been found to die in hospital settings at high, too (Weng et al., 2022). Other factors, such as geographic location, have differential impacts on place of death. Individuals who live closer to inpatient EOL services (i.e., hospital palliative care units or hospice residences) are more likely to die there, compared to individuals who live in rural and/or 92 remote areas; this is likely due to a lack of access (Chukwusa et al., 2019; McFarlane et al., 2023). Similarly, individuals living in states that have legislation aimed at increasing access and availability of palliative care programs are more likely to die at home (Quan Vega et al., 2023). A recent systematic review on congruence between preferred place of death and actual place of death identified several characteristics associated with higher place of death congruence, such as being married, having an illness (e.g., cancer, congestive heart failure, dementia), having discussed preferred place of death with a healthcare provider, being enrolled in hospice, or having documented preferences such as ACP (Garcia-Sanjuan et al., 2021). This review did not include information about race and socioeconomic position, highlighting a gap in the literature around place of death. Death is an issue relevant across the entirety of the human lifespan. Deaths that occur earlier in the lifespan, also known as “off-time” deaths, may have deleterious effects on survivors (Keyes et al., 2014; Mirzaei et al., 2019) and timing of a death can also impact the location in which one dies. In the U.S., decedents younger than 65 are more likely than those over 65 to die at home, in the emergency room, in an outpatient facility, or in a public space. Individuals older than 65 are more likely to die in an inpatient hospital setting, hospice facility, or nursing home (National Vital Statistics System, 2017). Though death is a lifespan issue, this paper will primarily focus on late-life deaths, as it utilizes a secondary data set of Medicare beneficiaries (e.g., individuals 65 years of age and older). Deaths in care communities (e.g., nursing homes, hospice residences) are often referred to as the “third space,” a hybrid between home and hospital settings (Oldenburg & Brissett, 1982). Hospice services can be provided in the home or in a hospice residence, a facility that is a combination of home-like and institutional settings that provides care for people who may not 93 have a suitable home for hospice use (Melekis et al., 2023). Little is known about hospice residences as a place of death, but one study found that most caregivers of individuals who died in a hospice residence rated the quality of their death as “average,” with some incidence of death-related distress (Weerakkody et al., 2018). There is not a right or wrong place to die, but the quality of death and alignment with values, goals, and preferences should be prioritized. A place of death concordant with patients and family wishes is the ultimate goal, but little is known about how healthcare provider involvement in the EOL experience influences place of death for individuals from diverse backgrounds. Thus, this study aims to answer three research questions: 1) Are there unique classes of healthcare provider involvement in the end-of-life experience of a nationally representative sample of decedents? a. I hypothesize that there will be four to five unique classes of healthcare provider involvement in the end-of-life experience, ranging from no/low involvement to well-rounded involvement. 2) Do lived experience characteristics, such as race, living alone, and/or geographic location predict class membership? a. I hypothesize that lived experience characteristics will predict class membership (i.e., the likelihood of belonging in a certain class will be different for those of color, who live alone and those from different geographic areas). Specially, people of color, those who lived alone at death, and those from the South will be more likely to be in a no/low involvement class. 94 3) Do these classes predict place of death? Is this association different based on lived experience (i.e., race, living alone, and geographic location)? a. I hypothesize that belonging to a well-rounded healthcare provider involvement class will predict dying at home and those who belong to a low involvement class will predict dying in the hospital or in a care community. I also hypothesize that this relationship will differ based on lived experience characteristics. Specifically, people of color, those who lived alone at death and those from the South will be more likely to die in the hospital or care community. Methodology Data and Sample This study used data from the National Health and Aging Trends Study (NHATS), an annual survey of a nationally representative sample of Medicare beneficiaries aged 65 years and older in the U.S. After a respondent died, a proxy close to the respondent filled out a last-month-of-life interview with questions related to the EOL care received by the decedent in the last month of their life. For this study, the last-month-of-life interview from NHATS waves 9-12 (2019-2022; n = 1290) was used. This data is from a public use dataset and therefore exempt by the Washington State University Institutional Review Board. Participants There were 1290 decedents from 2019-2022, which comprise “participants” for this study. The datasets have been cleaned and data is assumed to be missing only at random. In this study, I will exclude participants if they have a place of death listed as “Other” or “Don’t Know,” as place of death cannot be determined. Thus, my analytic sample included the 95 remaining 1201 participants/decedents. Based on preliminary analyses, there were no significant differences based on sociodemographic characteristics between included or excluded participants. Proxy respondents could choose from a list of 26 different relationships to the decedent. Of those, most proxy respondents were daughters (35.4%), followed by spouses (17.6%), sons (15.0%), and formal caregivers (11.2%). A large portion of the participant sample were White, non-Hispanic (70.6%), and women (59.3%), lived in the South (40.9%), and died at the age of 90+ (40.7%). See Table 3.1. for sample demographics. Measures Indicators Ten indicators were used in the current study for the latent class analysis. Recalling the Theory of a Harmonious Death and the concept of a “good death” (Corpora 2022; Krikorian et al., 2020; Meier et al., 2016), indicators were organized into three sections: Comfort, Control, and Connectedness. I operationalized each indicator. Appendix E provides more information about proposed indicators, covariates, and outcome variables, including how NHATS framed each question. All “Don’t know” responses were recoded to missing and missingness was assumed to be at random after running Chi-Square tests; no significant differences were detected for sociodemographic characteristics of interest (e.g., lived alone, race, geographic location) or round of data collection (See Appendix F). Table 3.2. provides frequencies and missingness of each indicator. Comfort. Comfort is comprised of two indictors: getting help with pain and getting help with anxiety. These indicators were originally asked as a series of two binary questions: 1. During the last month of life, were there times when the decedent experienced pain/anxiety? 96 (Yes/No) 2. Did they get any help in dealing with their pain/anxiety? (Yes/No). These were operationalized by creating a three-level indicator for getting help with pain (1 = Experienced pain, did not get help with pain, 2 = Experienced pain, got help with pain, 3 = Did not experience pain) and getting help with anxiety (1 = Experienced anxiety, did not get help with anxiety, 2 = Experienced anxiety, got help with anxiety, 3 = Did not experience anxiety). Control. Control is comprised of three indictors: no decisions about care without input, did not receive unwanted care and being informed about condition. To inquire about decisions about care without input, participants were asked: During the last month of life, was there ever a decision made about care or treatment without enough input from decedent or their family? This indicator was flipped to reflect no decisions about care without input, Yes = 1 and No = 2, in an effort keep indicators in the same direction as other indictors (i.e., protective factor coded as 2, risk factor coded as 1). The indicator about whether decedent received unwanted care came from the following question: During the last month of life, was there any decision made about care or treatment that your decedent would not have wanted? This indicator was flipped and recoded to reflect whether an individual did not receive unwanted care, No = 1 and Yes = 2. For being informed about condition, the proxy was asked: During the last month of life, how often was the decedent, you or other family members kept informed about their condition? This indicator originally had a 4-point Likert scale response (1 = Always, 4 = Never) but was recoded as Sometimes/Never = 1, Usually = 2, Always = 3 to reflect a more equal distribution of responses, as “never” and “sometimes” had smaller cell sizes. Connectedness. Connectedness is comprised of five indicators: hospice use, having more than one doctor, having a clear doctor in charge, having provider discuss religiosity, and being treated with respect. Hospice use was measured as a binary indicator (No =1, Yes = 97 2) based on the question, Did your decedent use hospice care in the last month of life? The next three indicators (more than one doctor, clear doctor in charge, and provider discussed religiosity) remained binary indicators whereas No = 1 and Yes = 2. Similarly, the indicator treated with respect was asked as During the last month of {Study Peron’s (SP)}’s life, how often were they treated with respect by those who were taking care of them? The original 4-point Likert scale response (1 = Always, 4 = Never) was recoded as Sometimes/Never = 1, Usually = 2, and Always = 3, again to reflect a more even distribution of cell sizes. Covariates There were three covariates of interest for this analysis: race, living alone, and geographic location. Race was obtained by asking “What is the decedents race?,” with the following response options: White, non-Hispanic; Black, non-Hispanic; American Indian, Asian, Native Hawaiian, Pacific Islander and other non-Hispanic; Hispanic. Race was dummy coded whereas White = 1, Black = 2 and Hispanic, Asian, Pacific Islander or more than one race = 3. These categories were dummy coded in accordance with appropriate analytic procedures (Lanza et al., 2007). Living alone was assessed by one question: Did the decedent live alone at the time of their death? (Did not live alone = 1 and Lived alone = 2). Geographic location was assessed as living in one of nine census divisions (i.e., New England, Mid Atlantic, East North Central, West North Central, South Atlantic, East South Central, West South Central, Mountain, and Pacific). These census divisions were collapsed into four geographic regions, as determined by the U.S. Census (2021): Northeast, Midwest, South, and West. Again, these categories were dummy coded in accordance with appropriate analytic procedures (Lanza et al., 2007). See Table 3.1. for covariate frequencies. Outcome 98 Proxy respondents were asked “Where did your decedent’s death take place?” with the following response options: at their home or someone else’s home, in a hospital, in a nursing home, in a hospice residence, in transit (ambulance to hospital), or somewhere else. Participants that responded “somewhere else” or “unknown” were dropped from this analysis, as I needed to be able to specify where the death occurred, and this information is not available in the public use dataset. The outcome variable place of death had three levels (1 = Home, 2 = Care Community, 3 = Hospital). Home deaths included a death at descendants or someone else’s home. Care community deaths include those at nursing homes or hospice residences. Hospital deaths included deaths at the hospital or in transit to the hospital. See Table 3.3. for outcome variable frequencies. Data Analysis This study utilized latent class analysis (LCA), a person-centered data analytic approach that uses response patterns on a set of observed indicator variables to identify qualitatively different latent subgroups. Using Statistical Analysis System (SAS v9.4M5) PROC LCA (Lanza et al., 2007), a SAS procedure for LCA, analyses were conducted in three phases: 1. Develop the model and assess response patterns of healthcare provider involvement in EOL experiences during the last month of life; 2. Examine the association between class membership and lived experiences (i.e., race, living alone at death, and geographic location); and 3. Explore the relationship between class membership, distal outcome, place of death, and significant covariates (as determined during Phase 2). These three phases map onto my three research questions outlined earlier. 99 Phase 1: Developing the LCA Using SAS and the PROC LCA macro, latent class models were estimated from a one- to a six-class model, or more if deemed appropriate (Nylund et al., 2007). The best fitting LCA model was determined through many factors including absolute and relative fit statistics, model interpretability, parsimony, and fit with theory. Model fit statistics included absolute fit statistics like the likelihood ratio and G2 value and relative fit statistics such as Akaike Information Criteria (AIC), Bayesian Information Criteria (BIC), conditional AIC (CAIC) and adjusted BIC, where lower levels are preferred for all (Collins & Lanza, 2010). Model interpretability included class homogeneity, class separation, and class certainty (Collins & Lanza, 2010). Class homogeneity is the extent to which response patterns are characteristic of individuals in a specific class. Class separation assesses whether response patterns across indictors are different across classes. Class certainty determines whether there is a large probability of membership in one, and only one, latent class (Collins & Lanza, 2010). The concept of parsimony, or that the simpler solution is the better solution, was also considered. Missing data in the latent class indicators are assumed to be at random and the maximum-likelihood procedure was used to account for missingness in the LCA model (Collins & Lanza, 2010). Finally, I evaluated the models based on the fit with theory; for example, I assessed whether the response classes reflected the components of a harmonious death, as outlined above. Phase 2: LCA with Covariates After determining the best fitting LCA model, separate models were run for each covariate to examine how each is associated with latent classes membership (i.e., lived alone at death, race, and geographic location). Eight models were run to account for the levels of each covariate and dummy coding procedures. A likelihood ratio chi-square test was run to compare 100 the fit of the LCA model from phase 1 and for each LCA with covariates models. If that test was significant, we concluded that the covariate is significantly associated with class membership. Each model displayed odds ratios that represent the difference in odds of membership in a specific latent class, relative to the reference class (Harmonious Death), corresponding to a one-unit change in the covariate. Phase 3: Distal Outcome with Moderation The last phase was to conduct a LCA with a distal outcome: place of death. I included the significant covariates determined in Phase 2 in each corresponding model, totaling three models. I used the Bolck, Croon, and Hagenaars (BCH) approach, a contemporary bias-adjusted 3-step classify-analyze approach that utilizes the posterior probabilities to assign individuals to the class they most likely belong in and then estimate the associations between class membership and the distal outcome (Bolck et al., 2004; Nylund-Gibson et al., 2019). The BCH approach is the best method as it obtains the least biased estimates (Bakk & Vermunt, 2016; Bray et al., 2015) and provides good coverage (Dziak et al., 2016). To conduct this analysis, I used the BCH macro for SAS (Dziak et al., 2017). Testing for moderation in this analysis is similar to testing moderation in a regression analysis via interaction effects. I used the BCH macro to test the interaction effect between the latent class and covariate in relation to the distal outcome to test if the association between latent class and place of death is different by each level of living alone at death, race and geographic location from the significance test established during Phase 2. (Dziak et al., 2017). This yielded a separate analysis for living alone at death, race, and geographic location. Results Of the analytic sample, many reported getting help with their pain (67%) and their anxiety (37%) in the last month of life. Many proxy respondents indicated that their decedent did 101 not have decisions made about their care without input (88%), did not receive unwanted care (86%), and were always informed about their condition (79%). Only 37% of the sample reported hospice use in the last month of life. While 60% reported having more than one doctor, only 46% had a clear doctor in charge. Just 38% of decedents had a healthcare provider that discussed religiosity at the end of life, but 85% of decedents were always treated with respect. More information about indictors can be found in Table 3.2. Of decedents included in this analysis, 41% died at home, 33% died in a Third Space (e.g., nursing home, hospice residence), and 26% died at a hospital. Developing the Latent Class Analysis Model fit statistics were utilized to select the best fitting model, such as absolute fit statistics like the likelihood ratio and G2 value and relative fit statistics including AIC, BIC, CAIC and adjusted BIC, where lower levels are preferred for all (Collins & Lanza, 2010). Models were estimated from 1- to 6-classes (see Table 3.4. for fit statistics for all class models). The AIC and G2 value suggested the 6-class model, the BIC and CAIC suggested the 3-class model, and the adj-BIC suggested the 4-class model. Due to parsimony and other model fit statistics, the 6-class model was eliminated as a possibility. However, the differences in the values between the 3- and 4-class models were negligible, thus the 3- and 4-class models were examined further to assess model interpretability. After evaluating these two models based on the response probability pattern from the indicators, the 4-class model was selected due to better class separation, homogeneity, and interpretability. Description of the Responsiveness Classes Four distinct classes emerged and were named, as is the standard procedure in latent class analysis. Class one is named the Discordant Death class; this class accounts for 6.5% of the 102 sample and is characterized by having the highest probability of experiencing pain and anxiety with no help, decisions being made about their care without input and the lowest probability of being informed about their condition. They had a high probability of having more than one doctor but the lowest probability of having a clear doctor in charge. Religiosity was often discussed, but they were also the least likely to be treated with respect. Class two is named Controlled Death and accounts for 46.3% of decedents. Decedents in this class are characterized by the highest probability of no decisions being made about care without input, not receiving unwanted care and always being informed about their condition. This class also had the lowest probability of using hospice, having more than one doctor, and religiosity being discussed by their provider yet the highest probability of having a clear doctor in charge and always being treated with respect. Class three is named the Harmonious Death class and accounts for 34.9% of the analytic sample. This class is characterized by the highest probability of reporting no pain and anxiety, the lowest probability of decisions being made about their care without input and receiving unwanted care, and the highest probability of using hospice. They also had the highest probability of religiosity being discussed by their provider, as well as a high likelihood of having a clear doctor in charge and always being treated with respect. Class four is named the Comforted Death class and accounts for 12.3% of the sample. The decedents in this class are characterized by having the highest probability of getting help with their pain and anxiety. They also had the highest probability of receiving unwanted care and having more than one doctor, but they had a low probability of having a clear doctor in charge and religiosity being discussed by their provider. See Table 3.5. for response probabilities for each class. Latent Class Analysis with Covariates Living alone 103 There was a significant difference in class membership by those who lived alone and who lived with others at their death, as determined by the chi-square likelihood test (p < .001). Those who lived alone at their death were 1.75 times less likely to be in the Controlled Death class relative to the Harmonious Death class than those who lived with others at their death (95% CI; 0.38, 0.85); this was the only significant association. See Table 3.6. for more information on these associations. Race There was a significant difference in class membership between White, non-Hispanic individuals and other racial groups as determined by a chi-square likelihood test (p = .015). Those who identified as White were 2.56 times more likely than other racial groups to belong in the Discordant Death class, relative to the Harmonious Death class (95% CI; 1.16, 5.64); this association was statistically significant. Those who identified as White were 1.73 times more likely to belong in the Controlled Death class, relative to the Harmonious Death class, than other racial groups (95% CI; 1.17, 2.57); this association was statistically significant. There was a significant difference in class membership between Black individuals and other racial groups as determined by a chi-square likelihood test (p = .047). Those who identified as Black were 1.72 times less likely to belong in the Controlled Death class, relative to the Harmonious Death class, than other racial groups (95% CI; 0.37, 0.88); this association was statistically significant. Those who identify as Black, non-Hispanic were 1.88 times less likely to belong in the Comforted Death class, relative to the Harmonious Death class, than other racial groups (95% CI; 0.28, 0.99); this association was statistically significant. There was not a significant difference in class membership between individuals who identified as Hispanic, or another race, and other racial groups as determined by a chi-square 104 likelihood test (p = .15). See Table 3.7. for more information on these associations. Geographic Location There was a significant difference in class membership between those living in the Northeast region and other geographic location groups as determined by a chi-square likelihood test (p = .015). Those who lived in the Northeast were 1.79 times less likely to be in the Controlled Death class, relative to the Harmonious Death class, than those in other regions (95% CI; 0.35, 0.91); this association was statistically significant. There was a significant difference in class membership between those living in the Midwest region and other geographic location groups as determined by a chi-square likelihood test (p = .039). Those who lived in the Midwest were 1.49 times less likely to belong in the Discordant Death class, relative to the Harmonious Death class (95% CI; 0.23, 1.97), 1.64 times more likely to be in the Controlled Death class, relative to the Harmonious Death class, than those in other regions (95% CI; 1.07, 2.51); this association was statistically significant. There was not a significant difference in class membership between those living in the South (p = .324) or West (p = .465) and other geographic regions as determined by a chi-square likelihood test. See Table 3.8. for more information on these associations. Latent Class Analysis and Distal Outcome by Covariate Lived Alone Those who lived with others at the end of their life had significant associations in class membership and place of death (Wald Statistic; 61.08, p < .001). Those who lived with others and were: in the Discordant Death class had the highest probability of dying in a Third Space (43%); in the Controlled Death class had the highest probability of dying at home (63%); in the Harmonious Death class had the highest probability of dying in a hospital (52%), and; in the 105 Comforted Death class had the lowest odds of dying at home (17%). See Table 3.9. and Appendix G for a visual representation of latent class membership and place of death by each covariate. Those who lived alone at the end of their life did not have significant associations between class membership and place of death. (Wald Statistic; 9.92, p = .128). Race Those who identified as White had significant differences in class membership and place of death (Wald Statistic; 37.4, p < .001). Those who identified as White and were: in the Discordant Death class had about equal probabilities of dying in all three locations; in the Controlled Death class had the highest probability of dying at home (60%); in the Harmonious Death class had the highest probability of dying in the hospital (49%); and in the Comforted Death class had the highest probability of dying in a Third Space (48%). Those who identified as Black had significant differences in class membership and place of death (Wald Statistic; 16.12, p = .013). Those who identified as Black and were: in the Discordant Death class had the highest probability of dying at home (66%); in the Controlled Death class had the highest probability of dying at home (67%); in the Harmonious Death class had the highest probability of dying in the hospital (50%); and those in the Comforted Death class had the highest probability of dying in the hospital (46%). There were not enough respondents that identified as Hispanic/Other to run this analytic test therefore there are no probabilities for class membership and place of death for this group. Geographic Location Those who lived in the Northeast had significant differences in class membership and place of death (Wald Statistic; 16.11, p = .013). Those who lived in the Northeast and were: in 106 the Discordant Death class had the highest probability of dying in a Third Space (54%); in the Controlled Death class had the highest probability of dying at home (62%) and the lowest of dying in the hospital (3%); in the Harmonious Death class had the highest probability of dying in the hospital (53%); and in the comforted death class had the lowest probability of dying at home (15%). I was unable to obtain an omnibus significance test (Wald Statistic) for those living in the Midwest, as there were zero (0) participants living in the Midwest, classified in the controlled death class, and died in a hospital and this test cannot be run with zero values in a category. However, those who lived in the Midwest and were: in the Discordant Death class had the lowest probability of dying in the hospital (1%); in the Controlled Death class had the highest probability of dying at home (55%); in the Harmonious Death class had the highest probability of dying in the hospital (55%); and in the Comforted Death class had the lowest probability of dying at home (14%). Those who lived in the South had significant differences in class membership and place of death (Wald Statistic; 34.58 p < .001). Those who lived in the South and were: in the Discordant Death class had the highest probability of dying in a Third Space (47%); in the Controlled Death class had the lowest probability of dying in the hospital (7%); in the Harmonious Death class had the highest probability of dying in the hospital (48%); and in the Comforted Death class had the lowest probability of at home (7%). Those who lived in the West did not have significant differences in class membership and place of death (Wald Statistic; 11.71, p = .069). Discussion This study examined data from 1201 decedents that were Medicare beneficiaries and 107 participants in the National Health and Aging Trends Study (Waves 9-12). Of these decedents, 41% died at home, 33% died in a Third Space (e.g., nursing home, hospice residence) and 26% died at a hospital. The probability of a decedents place of death was associated with their personal characteristics (i.e., living alone, race, geographic location) and latent class membership, suggesting unequal opportunity for EOL experiences. Latent class analysis identified four distinct classes of EOL experience among decedents – Discordant Death, Controlled Death, Harmonious Death, and Comforted Death. The Discordant Death class was labeled such as they had the lowest probability on all comfort, control, and connectedness indictors, suggesting that these individuals had the most difficult and unconnected death experience. The Controlled Death class was named so because they experienced the highest probability of having a positive response to all indicators associated with control at the end-of-life but had a low use of hospice and their providers did not discuss religiosity as much as other classes. The Harmonious Death class was named such because they had a high probability of experiencing a positive response across all indicators, in line with the subcategories of the theory of harmonious death (i.e., comfort, control, connectedness; Hing & Mak, 2019). The Comforted Death class was named such because they had a high probability of experiencing getting help with their pain and anxiety, indicators associated with comfort (Hing & Mak, 2019), but also had the highest probability of receiving unwanted care and were treated with respect less often than other classes. This analysis identified distinct patterns and experiences of end-of-life healthcare provider involvement and outcomes. Interestingly, classes that had the highest probability of having more than one doctor also had the lowest probabilities of having a clear doctor in charge, and vice versa. To my knowledge, this study is the first to examine association between the 108 number of doctors and definition of roles on a healthcare team. The Harmonious Death class had an 87% probability of having a clear doctor in charge and were the most likely to use hospice, potentially suggesting that hospice use may help to define roles within the healthcare team. However, those in the Controlled Death class had the lowest probability of hospice use but high probabilities of being in control at the end of life, suggesting that hospice use alone does not lead to a “positive” death experience. A recent qualitative analysis of dying individuals and caregivers found that several elements are present in a “healthy” death including dying without pain, without being alone, being informed about condition, consultation with a religious figure, and engaging in planning (Estebsari et al., 2023). The four distinct classes that emerged in the current study echo the elements of a healthy death found in this study. Receiving communication about death and dying from a trusted healthcare provider has been shown to improve preparedness for caregiving and preparedness for death (Tibell et al., 2023) therefore, those in the Controlled and Harmonious Death classes, who were more informed about their condition, may have been better prepared for death. Another recent study utilized NHATS to explore the relationship between symptom management, needs, care experience, and place of death (Bhagianadh & Arora, 2023). Similar to my findings, they found heterogeneity in EOL care patterns including varying levels of symptom management, care coordination, and hospice use, and different associations by demographic characteristic. Class Membership and Association with Demographic Characteristics and Place of Death To address the second aim of this study, a latent class analysis with covariates was conducted to assess associations in class membership by demographic characteristics (i.e., living along at death, race, and geographic location). There were differences in class membership such that decedents living alone at their death, compared to those who were not, were significantly 109 less likely (1.75 times) to be in the Controlled Death class, relative to the Harmonious Death class. As the Controlled Death class was the least likely to use hospice, decedents living alone may be more likely to utilize services and supports, such as hospice, as they may not have family caregivers to rely on. In addition, those in the Controlled Death class and who lived with others at the end of their life had the highest probability of dying in their home (63%) and those who were in this class and lived alone had the highest probability of dying in a Third Space (52%). This is congruent with previous research that suggests those who are alone at the end of their life are more likely to die in a nursing home than those who are not alone (Abedini et al., 2020). Findings suggest that living alone is a risk factor for dying in a location outside the home, therefore, early intervention and referral by health providers may contribute to a more harmonious death for this group. As for race, decedents who identified as White were significantly more likely (2.75 times) to be in the Discordant Death class compared to Black and Hispanic/Other race decedents. Other researchers using NHATS demonstrated that White individuals were more likely to report suboptimal EOL care quality than Black individuals (Luth & Prigerson, 2018). Current study findings are similar, with White individuals more likely to be in the class with the most suboptimal EOL experience and outcomes. White decedents in the Discordant Death class had about equal probabilities in all three places of death and White decedents were also significantly more likely (1.76 times) to be in the Controlled Death class. This finding is not in accordance with most literature, which asserts that White individuals are more likely to use hospice than other racial groups (Bazargan et al., 2021; Ornstein et al., 2020) but White decedents in this class had the highest probability of dying at home, which is congruent with the literature (Mayan et al., 2022; Orlovic et al., 2019). Black decedents were significantly less 110 likely (1.72 times) to be in the Controlled Death class. This class had the highest probability of dying at home, indicating that there were fewer Black, non-Hispanic decedents dying at home than White individuals who were more likely to be in the Controlled Death class. This finding is in accordance with the literature, which asserts non-White individuals are more likely to die in a hospital or nursing home than white individuals (Kelly et al., 2023). African American older adults living in the South emphasize the role of religion, and “turning it over to God” when defining their “good death” and EOL preferences (Kemp et al., 2023). In line with this literature, Black decedents were least likely to be in the Controlled Death class, which had the lowest probability of a health provider discussing religiosity, indicating some congruence with the role of religion. Another study found that Black, non-Hispanic and Hispanic decedents were less likely to use hospice and more often had hospital deaths (Bhagianadh & Aror, 2023). The current study replicates the finding that Black individuals were most likely to belong to a class that did not use hospice and were less likely to die at home. This disparity in hospice use and place of death could be due to existing preferences but may also be a result of significantly lower availability of hospice agencies in predominantly Black or Hispanic neighborhoods (Osakwe et al., 2023). In Sweden, a recent study found that a higher proportion of foreign-born individuals, majority from the African continent, died at home than domestic-born individuals (Lundberg et al., 2023). Though these two studies cannot be compared directly, they do demonstrate how culture and preference can impact place of death. To help achieve a death experience that is congruent with ones wishes, regardless of their social status, it is critical for healthcare systems to improve its collection and retention of individual EOL preferences as a regular part of patient care, including information about preferred place of death. Policies that aim to implement standardized procedures for recording (and updating) these preferences are 111 needed. Regarding geographic location, those living in the Northeast region were significantly less likely to be in the Controlled Death class, relative to the Harmonious Death class. This class was the least likely to use hospice indicating that decedents in the Northeast may be using hospice more often than those in other regions. A recent study found that decedents who died in states with palliative care laws had increased likelihood of dying at home or in hospice compared to states that did not have palliative care laws (Quan Vega et al., 2023). Quan Vega and colleagues (2023) also determined that 77% (7/9) states in the Northeast and 42% (5/12) in the Midwest had states with palliative care laws. Results from the current study echo these findings, as those living in the Midwest were significantly more likely (1.64 times) to be in the Controlled Death class, the class least likely to use Hospice at the EOL. Though there were some significant associations between geographic location and class membership, a recent study using NHATS last month of life interview data found that better quality of life at the end of life was strongly associated with higher socioeconomic status and not geographic location factors (e.g., rurality, health scores; Gansa et al., 2023). Collectively, these findings demonstrate the influence of geographic location and demographic factors on the EOL experience, but future research is needed to untangle mechanisms that can be targeted in interventions designed to promote a harmonious death for all individuals. Limitations and Future Directions While the findings of this study are novel, there are several limitations to address. First, this study relied on proxy respondents to answer questions about the care received by the decedent in the last month of their life. The use of proxy respondents is necessary, as this study used retrospective data about people who had already died and cannot share the information 112 themselves. Recent work has found that proxy respondents, in the health-related sector, can be a reliable reporter for overt behaviors and situations but have more difficulty reporting covert behaviors (Lopez et al., 2023). Although the present study utilized indicators that were both overt (e.g., did their healthcare provider discuss religiosity?) and covert (i.e., did they receive any unwanted care?) in nature, findings should be interpreted with caution. Second, place of death is not a valid measure of quality of death. As this study utilized a national secondary data set, I was limited to predetermined questions and was unable to obtain additional information about preferences related to EOL care and place of death. While the current study could not examine the congruence between preferred place of death and actual place of death, it is important for future work to ascertain preferences related to the end-of-life care as well as connect individuals to available services and supports to help achieve this congruence. Third, this study had a very low sample of decedents that identified as Hispanic or other races, making it difficult to conduct analyses with these racial groups, therefore no conclusions could be drawn about these groups. Recently, NHATS announced that they have refreshed their sampling pool to maintain their ability to represent the older Medicare population, including an additional group of Hispanic Medicare enrollees. Future work should include this refreshed sample wave once it is released in 2024. Lastly, the waves of data for this study were from 2019-2022, over the height of the COVID-19 pandemic, potentially artificially influencing the place of death or answers provided by proxy respondents. However, there were no significant differences by wave of data collection for any of the indicators or place of death. Still, the effects of COVID-19 on EOL experiences and place of death cannot be ignored. 113 Conclusion This work reveals that healthcare providers have an influence on the end-of-life experience and more needs to be done to provide an equitable dying experience, regardless of social status, position, and location. This study utilized latent class analysis, a person-centered analytic approach to understand the EOL experience of a nationally representative group of Medicare enrollees. Analysis determined four distinct classes of EOL experience and provider involvement, significant differences in membership in these classes by demographic characteristics, and significant associations between class membership and place of death. For example, Black decedents were significantly less likely to be in a class that experienced control or comfort at the EOL and were significantly more likely to die in the Hospital. These differences demonstrate unique, and disparate, death experiences for people across living arrangement, race, and geographic location. It is critical that end of life preferences for care and place of death be integrated early, and often, into regular healthcare. While health providers are working under the confines of the established healthcare system, there needs to be improved education and training in obtaining end of life preferences from patients and their families. This study also contributed to a growing body of literature on place of death and sought to understand how these unique death experiences are associated with demographics and place of death. To improve the inequities in EOL experience and place of death, there is a salient need to improve integration of EOL services and supports in underserved communities. 114 OVERARCHING CONCLUSION TO THE THREE MANUSCRIPTS This dissertation followed an upstream to downstream public health approach (McKinlay, 1979), and includes three manuscripts that explored death education and EOL experiences of several unique target audiences. The primary goals of this dissertation were to 1) explore how cultural content, cultural humility, and EOL experiences of diverse groups are integrated in undergraduate thanatology courses, 2) assess the literature related to death and dying coursework in health professional education curriculum, and 3) examine healthcare professionals’ involvement with the EOL experience for diverse groups of people. Conjointly, this research contributes to the state of death education knowledge with in undergraduate and health professional education settings, as well as the influence that health professionals have on the EOL experience of decedents with diverse identities and their place of death. This overarching conclusion provides an overview of the aims, findings, and opportunities for future research of each of the three studies. Overview of Findings Manuscript One: Undergraduate Death Education Study one was an empirical study that used a convergent parallel mixed methods design to explore how cultural content, cultural humility, and EOL experiences of diverse groups are integrated in undergraduate thanatology courses. Data was collected in Spring 2023 and came from a larger project that focused on identifying and evaluating available university/college thanatology curriculum in the U.S. Instructors teaching death and dying courses across the country were asked to participate in a quantitative survey related to their university characteristics, course characteristics, topics offered in their course, demographic characteristics, and death anxiety. Upon completion of this survey, all were invited to participate in a 45-minute 115 semi-structured interview with study staff about the instructor’s course, perspectives on challenges and opportunities for death education, advice for future instructors, strategies for addressing diverse populations and content in their course, and course activities/assignments they find to be effective for teaching death and dying concepts/topics. There were three aims for this study: 1) explore how culturally responsive-sustaining pedagogical principles have been integrated into the delivery of postsecondary thanatology courses (Qualitative); 2) determine if differences in topical offerings and instructor death anxiety across university (i.e., public vs. private), departmental (i.e., social sciences and humanities vs. clinical), and instructor characteristics (i.e., early vs mid/late career stage) exist (Quantitative); and 3) assess whether interviews with thanatology instructors help explain quantitative differences in topical offerings and instructor death anxiety. Fifty-six participants completed the quantitative survey about their thanatology class and demographic characteristics. Of those, 27 completed a semi-structured interview about their perspectives, experiences, and challenges of teaching a death and dying related course in a postsecondary setting. Interviews with thanatology instructors were deductively and inductively coded, resulting in seven themes related to delivering courses using culturally responsive-sustaining pedagogical principles: • Welcoming and Affirming Environment • Fostering High Expectations and Rigorous Instruction • Inclusive Curriculum and Assessment • Ongoing Professional Learning • Doing your Own Work • Classroom Culture 116 • Desire to do More. Instructors teaching in clinical settings were significantly more likely to cover death and grief in children while instructors in the social sciences and humanities were significantly more likely to cover understanding reactions to death. Instructors at private institutions were significantly less likely to cover death anxiety than instructors in public institutions, and instructors in mid/late career stage were significantly more likely to cover grief, bereavement, and mourning and understanding reactions to death compared to early career instructors. Concordant with hypotheses, those teaching at a private institution had significantly lower death anxiety than those in public institutions. Qualitative and quantitative results were examined in tandem to help explain differences identified through quantitative analyses. This mixed method analysis found both concordance and discordance when comparing the two strands. In concordance, quantitative analysis suggested that clinical instructors were significantly more likely to cover death and grief in children in their classes and qualitative findings echo this finding, of instructors that mentioned covering topics related to children in the qualitative interviews most were teaching in a clinical department. In discordance, quantitative analysis suggested that mid/late career instructors were significantly more likely to cover the topic of grief, bereavement, and mourning compared to early career instructors, but qualitative findings suggest that most instructors, regardless of career stage, include grief, bereavement, and morning in-depth in their class. This study adds to the empirical literature by emphasizing the importance of a multidisciplinary approach when teaching thanatology related content. Findings support bringing lived experiences of the instructor into the classroom as a tool for building safety, belongingness, and learning for students. I provide tangible suggestions and pedagogical resources for 117 instructors of thanatology related courses for delivering their class using culturally responsive-sustaining principles including assignment and project ideas. Instructors often reported a lack of appropriate resources that include cultural content. There is an opportunity for future work to address this gap by developing an open-access repository of resources for death and dying content that represents a multitude of voices and identities. Manuscript Two: Death Literacy Education of Health Professionals Study two was a scoping review of recent literature on death education interventions delivered in formal education settings of five health professions considered key players in the death care system (i.e., medical school, nursing, social work, counseling, and pharmacy). There were three aims in this study: 1) explore what interventions have been implemented in postgraduate health professional education settings; 2) assess how cultural humility has been incorporated into these interventions; and 3) determine the effective components (i.e., activities, implementation strategies, modality of delivery, length) of death education interventions for health professionals. After a search in three databases (i.e., PsycINFO, Medline Complete, CINHAL Complete) for published works over the last 10 years (January 1, 2013 – October 1, 2023) and associated screening, 16 articles met the inclusion criteria for this scoping review. Most studies occurred within Medical School settings (n = 8), followed by Nursing (n = 6), Social Work (n =2), Counseling (n = 2) and Pharmacy (n = 1). One-quarter of these studies were interdisciplinary in nature and included more than one health profession (i.e., Medical/Nursing; Social Work/Counseling). There were no negative or adverse effects on learning associated with intervention delivery, which indicates that death education of health professionals is not having deleterious or unintended effects. Rather, studies revealed significant increases in the outcome of interest or growth in the expected direction. This points to a need for 118 death and dying to be included early, and often, in the education of our health professionals. However, the studies employed a broad range of designs to measure outcomes of interest. Most studies in this review were single site, non-randomized studies with a small sample size. Learning evaluations were conducted via pre and post testing of knowledge and skills. Seven studies explicitly covered cultural content and topics as a part of their intervention, though there was substantial variation; didactic cultural content was infused across the intervention, included as its own module, or included into a case study or other practical work. No standardization in reporting of intervention specifics adds to the complexity of interpretation because results cannot be directly compared between studies. For each study, I identified which death literacy domain(s) were evident in intervention descriptions – whether it was factual, practical, experiential, or community-based death literacy. Most studies focused on factual (n = 15) death literacy, followed by practical (n = 12), experiential (n = 10), and community (n =2) death literacy. A wide range of topics were included in each of these death literacy domains (e.g., communicating with dying people and their families, conducting advance care planning, and factual information on pain/symptom management). There were a variety of pedagogical approaches and intervention components utilized in the studies, including didactic learning (n = 13), experiential learning activities (n = 9), reflective writing (n = 9), peer/expert discussion (n = 7), and standardized patient simulations/encounters (n = 6). Most studies utilized didactic learning to introduce relevant material to the participants. Often, reflective writing was used in tandem with didactic learning or as a follow up to process experiential learning activities. Only one study used a quasi-randomized control trial as their methodological design (Day et al., 2015), though many utilized quasi-experimental, cross-sectional designs. Only six studies 119 used qualitative methodologies. All approaches have their pros and cons, but future work should prioritize multi-site, randomized controlled trials to determine efficacy of pedagogical methods of teaching EOL topics to health professionals. This review was limited to studies that occurred in the United States. During the examination stage of articles identified from the search strategy, a total of 32 studies occurred outside of the U.S. and were excluded. Including non-U.S. studies in a review would plausibly enhance the state of death education and training in the U.S., as there are many studies conducted in other countries on this topic. Health professional education programs in the U.S. would benefit from reviewing, culturally adapting, and integrating effective, new approaches to death education and training, when appropriate. Manuscript Three: End-of-Life Experience and Health Professional Influence Study three was an empirical study that used a subset of data from the National Health and Aging Trends Study (NHATS), an annual survey of a nationally representative sample of Medicare beneficiaries aged 65 years and older in the U.S. After a respondent died, a proxy close to the respondent filled out an interview with questions related to the EOL care received by the decedent in the last month of their life. For this study, the last-month-of-life interview from NHATS waves 9-12 (2019-2022; n = 1290) was used. The aims of this study were addressed over three phases, each described below. The first aim was to determine if there are unique classes of healthcare provider involvement in the EOL experience of a nationally representative sample of decedents. I hypothesized there would be four to five unique classes of healthcare provider involvement ranging from no/low involvement to well-rounded involvement. Using latent class analysis (LCA), a person-centered data analytic approach, four unique classes of healthcare provider involvement were identified. The Discordant Death class (6.5% of sample) was characterized by 120 having the highest probability of experiencing pain and anxiety with no help and decisions being made about their care without input, and the lowest probability of being informed about their condition. They also had a high probability of having more than one doctor but the lowest probability of having a clear doctor in charge. Religiosity was often discussed, but they were also the least likely to be treated with respect. The Controlled Death class (46.3%) was characterized by the highest probability of no decisions being made about care without input, not receiving unwanted care, and always being informed about their condition. This class had the lowest probability of using hospice, having more than one doctor, and religiosity being discussed by their provider; yet, they had the highest probability of having a clear doctor in charge and always being treated with respect. The Harmonious Death class (34.9% of sample) was characterized by the highest probability of reporting no pain and anxiety, the lowest probability of decisions being made about their care without input and receiving unwanted care, and the highest probability of using hospice. They also had the highest probability of religiosity being discussed by their provider, as well as a high likelihood of having a clear doctor in charge and always being treated with respect. Lastly, the Comforted Death class (12.3% of sample) was characterized by having the highest probability of getting help with their pain and anxiety. They had the highest probability of receiving unwanted care and having more than one doctor, but they had a low probability of having a clear doctor in charge and religiosity being discussed by their provider. The second aim sought to examine how covariates (i.e., race, living alone, and geographic location) were associated with membership in the latent classes. Next, I highlight a few key findings from the study. There was a significant difference in class membership by those who lived alone and those who lived with others at their death, as determined by the chi-square likelihood test (p < .001). Specifically, those who lived alone at their death were 1.75 times less 121 likely to be in the Controlled Death class relative to the Harmonious Death class than those who lived with others at their death (95% CI; [0.38, 0.85]). Similarly, those who identified as White, non-Hispanic were 2.56 times more likely than other racial groups to belong in the Discordant Death class, relative to the Harmonious Death class (95% CI; [1.16, 5.64]); this association was statistically significant and those who identify as White, non-Hispanic were 1.73 times more likely to belong in the Controlled Death class, relative to the Harmonious Death class, than other racial groups. These findings pave the way for future work on equalizing the EOL experience but further consideration about concordance with EOL wishes and experience is needed. The third and final aim was to test if the association between latent class membership and place of death was different by each covariate (i.e., race, living alone, and geographic location). Here, I highlight two key findings from the study. Decedents who lived with others and were: in the Discordant Death class had the highest probability of dying in a Third Space (43%); in the Controlled Death class had the highest probability of dying at home (63%); in the Harmonious Death class had the highest probability of dying in a hospital (52%) and in the Comforted Death class had the lowest odds of dying at home (17%). Another major finding was that Black, non-Hispanic decedents were significantly less likely to be in the Controlled Death class. This class had the highest probability of dying at home, indicating that fewer Black, non-Hispanic decedents died at home than White, non-Hispanic individuals who were more likely to be in the Controlled Death class. Overall, this study found unique classes of healthcare provider involvement in the EOL experience of a nationally representative group of decedents. This work asserts that health providers have influence over the experiences one has at the end of their life, and ultimately, their place of death. However, this work was bound by the confines of secondary data, and I 122 could not examine concordance between the EOL wishes of individuals before they died and the care that was received as they died. Thus, future work must examine concordance between care wishes and care received, which can inform the role of, and training needed for, healthcare providers. Contributions to the Field of Lifespan Prevention Science and Opportunities for Future Research The field of Prevention Science is instrumental in addressing health and well-being across the lifespan. Taking a lifespan approach, researchers have demonstrated that having more adverse childhood experiences is associated with poorer health nearly three decades later, more so for people with more stress (Bourassa et al., 2023) and that having more education buffers the increased mortality risk for those who experienced persistent poverty from childhood to adulthood (Green et al., 2023). These findings demonstrate that life experiences, circumstances, and access influence health, life, and death. Thus, Prevention Science is well poised to extend its lifespan reach through end of life. This extension would help improve the EOL experience for all, regardless of age. However, the rapid increase in the age and diversity of our population (U.N., 2022), coupled with an increase in longevity (He & Dupre, 2021), will result in many people needing health and death care, which should be delivered with cultural humility. Existing disparities in health, life, and death among individuals from historically marginalized groups exacerbate the likelihood of receiving poor EOL care and having worse relationships with their health care providers (Ashana et al., 2022; Hamel et al., 2017). Thus, it is critical that health professionals, who will undoubtedly face death and dying of their patients/clients, be trained in death education. Particularly, death education should be delivered with cultural humility. However, as it stands, death education, especially death education that covers cultural content, of 123 health professionals is lacking (Bharmal et al., 2022; Stein et al., 2019). This dissertation adds to the literature on death education both at the undergraduate (Manuscript 1) and health professional (Manuscript 2) level. It also explores how health professionals’ influence the EOL experience of diverse individuals and their place of death (Manuscript 3). There are four overarching themes and contributions to the field of lifespan prevention science that emerged across my dissertation, including cultural humility in EOL care and education, considering geographic location and political climate, emphasizing the importance of self-care, and approaching EOL care through a multidisciplinary lens. Below I outline and describe associated future directions for each theme. Cultural Humility in End-of-Life Care End-of-life experiences across culture, ethnicity, and other minoritized identities were a key focus of this dissertation. The infusion of cultural content in death education was assessed in both Manuscripts 1 and 2. Interviews with instructors resulted in tangible suggestions for delivering thanatology related courses using culturally responsive-sustaining principles (Manuscript 1), a unique contribution to the field of death education. Several interventions in health professional education settings included cultural content, although with variability in content and delivery (Manuscript 2). Research suggests that intentional inclusion of cultural humility in health professional education improves cultural humility of learners (Frie & Timm, 2023) and positive patient/client outcomes (DeBlaere et al., 2023; Smith et al., 2023). Thus, integrating cultural humility as a regular part of health professional curriculum is vitally important for improving the health, life, and death of everyone, equitably. Future work should focus on implementing multi-component interprofessional death education interventions, with cultural humility at the core. 124 In the latent class analysis, the relationships between identities (i.e., race, living alone, geographic location), class membership, and place of death were examined (Manuscript 3). There were differences in class membership by these identities and place of death. For example, those living alone at the EOL were significantly more likely to be in a class with poor EOL care and had a higher probability of dying in the hospital. Black individuals were more likely to belong to a class that had EOL care that focused on control but lacked physical comforts and positive provider relationships. Though, most people prefer to die at home (van Doorne et al., 2021), Black individuals had a higher probability of dying in the hospital in this study. This work contributes to the literature on cultural and EOL outcomes, but there is a need for the field to examine a wider range of identities and consider intersectionality (i.e., overlapping identities and related systems of oppression, discrimination, and domination; Crenshaw, 1989) within the EOL space. For example, LGBTQIA+ identifying individuals are an increasingly common subpopulation with unique end of life care needs (Kalmar & Mariano, 2024) and was beyond the scope of my dissertation. However, future work should explore how health professionals can support the EOL needs of everyone, regardless of identity, culture, and social location. Geographic Location and Political Climate To assess how geographic location impacts death education and the EOL experience, each manuscript in this dissertation had a component related to geographic location. A major theme from the cross-national qualitative interviews with thanatology instructors (Manuscript 1) was the “Classroom Culture” where they reported the culture of the class, students in the class, and the greater geographic area (e.g., town, city, state) as assets for teaching and learning. They also suggested the classroom environment was an opportunity to learn about diversity and culture together, seemingly independent of their exact geographic location (i.e., Northeast, 125 Midwest, South or West). However, due to a recent trend in limiting the content postsecondary educators can cover in their classroom, including critical race theory (Miller et al., 2023) and bodily autonomy, instructors in some states may be heavily limited in their inclusion of cross-cultural or controversial issues in their death education courses (American Council on Education, 2023). Future work is needed to explore this legislation’s impact on student learning and the development of resources and supports for instructors teaching under the confines of a restrictive environment. Similarly, I considered geographic location of studies in the scoping review (Manuscript 2) to determine any patterns in intervention delivery. Many of the studies in this review occurred in the South (n = 7) or the Midwest (n = 5). Interestingly, four of the studies conducted in the South included cultural content in their interventions, while only one study in the Midwest did. As death and dying can be a politically charged topic (Le Theule et al., 2018), future work should examine death education interventions across political and geographic locations to understand opportunities and barriers for delivering death education to future healthcare professionals, particularly in health professional education settings outside of medical school. Lastly, geographic location was a key covariate of interest in the latent class analysis of decedents’ EOL experience and place of death (Manuscript 3). Decedents living in the Midwest were significantly more likely to be in a class with more control over their care at EOL but had low likelihood of hospice use; decedents in the Northwest were more likely to be in a class with high probability of using hospice at the end of life. These results suggest some geographic differences in the EOL experience that need to be further examined. Taken together, findings from this dissertation suggest that geographic location and associated political climate may influence death education of health professionals and the EOL 126 experience of individuals. Though implications of geographic location were assessed in all three manuscripts, it was examined at the largest census division level, eliminating potential nuance at the state and regional levels. Future work should delve into this phenomenon at the state and regional levels to further understand how (and if) geographic location impacts death education (e.g., restricting access and/or specific topics) and EOL experiences of individuals. Importance of Self-Care Death and dying is a topic that carries a significant amount of emotional weight. People working in death and dying are likely to suffer from compassion fatigue (Portoghese et al., 2020) and have poorer mental health (Kostka et al., 2021). These adverse outcomes were further exacerbated because of the global COVID-19 pandemic, which disrupted rituals and rites of death and dying (Chan et al., 2021). However, engaging in a holistic, meaningful, and personalized self-care practice has been shown to improve the well-being of people working in the death and dying spaces (Buonaccorso et al., 2022; Mills et al., 2018). The importance of self-care for death/healthcare workers emerged as a central theme of this dissertation. Many thanatology instructors reported self-care being integral to their well-being when teaching a death and dying related course (Manuscript 1). Instructors emphasized “doing their own work” and having meaningful self-care practice, engaging in therapy, or using another type of support network while teaching their class. Findings from Manuscript 1 provide tangible suggestions related to self-care for instructors of death and dying courses, which may be applicable to health and human services professionals. However, only one intervention in the scoping review mentioned including specific information on self-care for the health provider as part of their intervention (Manuscript 2). This suggests a gap in prioritizing self-care in death education and training; future work should emphasize the importance of self-care as a part of the 127 education of health and human services professionals and for those teaching about death and dying. In turn, this will ensure the well-being of professionals is maintained, as they have a key influence (Manuscript 3) on EOL experience of us, our loved ones, and society in general. Multidisciplinary Approach to End-of-Life Based on my findings, a multidisciplinary approach to the end of life may be highly beneficial to decedents, families, and providers. Findings from the empirical mixed methods study in this dissertation (Manuscript 1) suggest that instructors in social sciences and humanities and clinical disciplines utilize overlapping but, different, approaches to delivering culturally responsive-sustaining course content. Instructors can learn from each other to deliver well-rounded thanatology education to undergraduate students. This type of inquiry can expand to post-secondary education settings, too. For example, in line with my findings, a recent study purported that most medical students wanted more social science and humanities content incorporated into their traditional medical course work; they reported the inclusion of such content would make them a more well-rounded doctor (Petrou et al., 2021). Researchers have created conceptual models for integrating social science and humanities into clinical training for improving analytical thinking of health professionals (Prince et al., 2022), but more work is needed that is specific to death education and that assesses feasibility and adaptability of conceptual models across a myriad of health professions. Findings from the scoping review study (Manuscript 2) indicate that only 25% of studies approached the death education of health professionals using a multidisciplinary approach. These studies reported positive outcomes for all health professionals. However, these studies only included nursing and medical students or social work and counseling students. Future work should consider incorporating a variety of interprofessional education opportunities into the 128 curriculum of health professional education, to yield mutually beneficial outcomes for all disciplines. Health professionals that are exposed to interprofessional education and collaboration in their education delivered more effective patient-centered care and reported better cooperation by healthcare teams (Fenn et al., 2022; Ojelabi et al., 2022). Facilitating a multidisciplinary approach may be especially important for those working in EOL care, as EOL care is generally delivered via a team of healthcare professionals including doctors, nurses, social workers, counselors, and pharmacists. Individuals within these multidisciplinary teams have various roles and responsibilities that correspond to their clinical expertise and training. Clear definitions of these roles and responsibilities are key for providing effective EOL care (Dahlin et al., 2018), but little is known about the influence of health care teams on the EOL experience of diverse people. Findings from the latent class analysis in my dissertation (Manuscript 3) suggest that decedents who had more than one doctor were also less likely to have a clear doctor in charge. Similarly, the class (i.e., Harmonious Death) that was most likely to use hospice was also most likely to have a clear doctor in charge, suggesting that hospice use, or having fewer doctors, may result in a clear definition of roles and responsibilities on a healthcare team. Further work is needed to fully examine and understand the influence that health professionals have on the EOL experience of diverse groups of people. Conclusion In healthcare performance rankings of 11 high-income countries, the United States ranks last, despite spending the most on healthcare (Scheider et al., 2021). Healthcare spending increases exponentially at the end of life (French et al., 2017), especially for those who die in the hospital (Abian et al., 2022). With the unequal, but rising, cost of health and death care, there is a need for a healthcare system that invests in equitable primary care that includes death 129 preparedness at the individual level. To achieve this, creative solutions need to be both upstream (i.e., healthcare policy reform) and midstream (i.e., the development of pedagogical interventions) to improve death education and death literacy of our health and human service workforce. It is through enhanced upstream multidisciplinary death education and training of health professionals, delivered with cultural humility, that we can address the existing downstream inequities in the death and dying experience. 130 REFERENCES OVERARCHING INTRODUCTION REFERENCES Abramson, C.M. (2016). Unequal aging: Lessons from inequality’s end game. Public Policy & Aging Report, 26(2), 68-72. https://doi.org/10.1093/ppar/prw006 American Nurses Association. (2016). 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Description of Relevant Guidelines and Recommendations for Achieving CR-S Principles Principle Guidelines and Recommendations Application to Death Education Welcoming and Affirming Environment • Take collective responsibility to learn about students’ cultures and communities. • Utilize materials that represent and affirm student identities. • Create an environment that establishes mutually agreed-upon norms and encourages students. • Consider the classroom as a collaborative space; include students in the creation of that space. • Set standards, rules, and regulations for mutually agreed upon norms and expectations. Fostering High Expectations and Rigorous Instruction • Reflect on your own implicit bias and how that might impact your expectations for student achievement. • Incorporate current events, even if controversial, into instruction. Utilize tools that encourage students to engage with difficult topics constructively. • Provide students with opportunities to present to their peers through project-based or stations-based learning. • Incorporate current death events (i.e., COVID-19, controversial debates like medical aid in dying or bioethical issues). • Incorporate student led projects in the classroom to provide opportunity to present to peers. Inclusive Curriculum and Assessment • Connect instructional content with the daily lives of students by using culturally specific examples (e.g., music, movies, text). • Take field trips to community-learning sites such as museums, parks, cultural centers, etc., to foster student’s understanding and connection to surrounding community. • Utilize resources that are written and developed by racially, culturally, and linguistically diverse perspectives. • Utilize culturally specific examples within instruction. • Take field trips; invite guest speakers. • Uses materials that represent multiple identities. Ongoing Professional Learning • Use professional learning activities as opportunities to better acquaint oneself with diverse communities in which their students represent. • Engage in meaningful and regular diversity, equity, and inclusion training. • Take ownership and accountability after making mistakes, using mistakes as an opportunity to learn and grow. • Engage in professional learning activities and regular DEI training. 199 Note. Guidelines and recommendations relevant to this study pulled from (NYSED, n.d.) Table 1.2. Participant, University, and Course Characteristics Variable n (%) Gender Female 47 (83.9%) Male 6 (10.7%) Other1 3 (5.4%) Race2 White 53 (94.6%) Asian 3 (5.4%) Hispanic, Latino/a, Chicano/a 1 (1.8%) Career Stage Graduate Student/Post-Doctoral 3 (5.4%) Early Career 8 (14.3%) Middle Career 26 (46.4%) Senior Academic 19 (33.9%) Type of University Junior or Community College 1 (1.8%) Religious Institution 2 (3.6%) 4-Year Private University 10 (17.9%) 4-Year Public University 3 (76.8%) Land-Grant University/HDFS (Yes) 22 (39.3%) Students Enrolled 1 – 5,000 10 (17.9%) 5 – 10,000 9 (16.1%) 10 – 20,000 9 (16.1%) 20 – 40,000 17 (30.4%) 40,000+ 11 (19.6%) Department3 Human Development Family Sciences 12 (17.9%) Nursing 9 (13.4%) Sociology 9 (13.4%) Psychology 8 (11.9%) Social Work 8 (11.9%) Gerontology 7 (10.4%) Anthropology 4 (6.0%) Religion, Philosophy 4 (6.0%) History, Criminal Justice Public Health 2 (3.0%) 2 (3.0%) General, All departments 2 (3.0%) Course Delivery Modality4 In-person 37 (66.1%) Online 9 (16.1%) 200 Both online and in-person options 5 (8.9%) Hybrid 5 (8.9%) Course Delivery Schedule Every other year 12 (21.4%) Once a year 22 (39.3%) Every semester 18 (32.1%) Other5 4 (7.1%) Course Requirement Required 5 (8.9%) Elective 51 (91.1%) M ± SD (range) Age 53.04 ± 11.35 (32-78) Death Anxiety Questionnaire 23.63 ± 3.87 (16-34) Times Taught Course 10.29 ± 9.83 (1-50) Size of Course (number of students) 54.7 ± 58.5 (5-300) Notes. 1 = Other includes prefer not to say, biological female and non-binary; 2 = Participants could select multiple races; HDFS= Human Development and Family Studies; 3 = Courses may be cross listed in multiple departments; 4 = Pre-pandemic; 5= Other includes every quarter, randomly, twice a year on quarter system. 201 Table 1.3. Deductive and Inductive Themes from Qualitative Analysis of Interviews Theme Description of Theme/Subtheme Deductive Themes Welcoming and Affirming Environment (Theme 1) • Consider the classroom as a collaborative space; include students in the creation of that space (Subtheme 1.1) • Set standards, rules, and regulations for mutually agreed upon norms and expectations (Subtheme 1.2) Fostering High Expectations and Rigorous Instruction (Theme 2) • Incorporate current death events (i.e., COVID-19, controversial debates like medical aid in dying or bioethical issues) (Subtheme 2.1) • Incorporate student led projects in the classroom to provide opportunity to teach peers (Subtheme 2.2) Inclusive Curriculum and Assessment (Theme 3) • Utilize culturally specific examples within instruction (Subtheme 3.1) • Take field trips; invite guest speakers (Subtheme 3.2) • Uses materials that represent multiple identities (Subtheme 3.3) Ongoing Professional Learning (Theme 4) • Engage in professional learning activities and regular DEI training. • Take ownership and accountability after making mistakes, using mistakes as an opportunity to learn and grow Inductive Themes Doing your own work (Theme 5) • Attend therapy • Prioritize self-care (students or faculty) Classroom Culture (Theme 6) • Consider culture of students as asset • Discuss your own identity and how that impacts the classroom space Desire to do more (Theme 7) • Express desire for more trainings and content that reflects a multitude of identities 202 Table 1.4. Extent to which Specific Topics were Covered in Death and Dying Courses Extent Topic Addressed Topic Not at all Somewhat In-Depth May Consider Including Advance care planning 2 13 40 1 Bioethical issues 5 21 28 2 Body disposition 3 14 38 1 Clinical practices 2 22 30 2 Cross-cultural issues 1 9 45 1 Death and grief in children 5 17 33 1 Death anxiety 1 17 38 0 Death positivity movement 14 20 15 7 Death systems 13 21 17 4 End-of-life care and treatment 0 10 45 1 Euthanasia, medical-aid-in-dying 2 15 39 0 Funeral practices 3 8 45 0 Grief, bereavement, and mourning 0 4 51 1 Professions in thanatology 20 34 8 4 Religious/Spiritual beliefs 0 25 31 0 Suicide 2 23 31 0 Traumatic Deaths 2 27 26 1 Understanding reactions to death 2 8 45 1 203 Table 1.5. Coverage of Specific Topics were Covered in Death and Dying Courses (Dichotomized) Topic Not at all/Somewhat (n) In-Depth (n) Advance care planning 16 40 Bioethical issues 28 28 Body disposition 18 38 Clinical practices 26 30 Cross-cultural issues 11 45 Death and grief in children 23 33 Death anxiety 18 38 Death positivity movement 41 15 Death systems 39 17 End-of-life care and treatment 11 45 Euthanasia, medical-aid-in-dying 17 39 Funeral practices 11 45 Grief, bereavement, and mourning 5 51 Professions in thanatology 48 8 Religious/Spiritual beliefs 25 31 Suicide 25 31 Traumatic deaths 30 26 Understanding reactions to death 11 45 204 Table 1.6. Instructor Characteristics of Semi-structured Interview Instructor Characteristics N (%) University Type Public 19 (70%) Private 8 (30%) Department Affiliation Clinical 14 (52%) Social Sciences and Humanities 13 (48%) Career Stage Early 9 (33%) Mid/Late 18 (67%) Geographic Location Northeast 7 (30%) Midwest 5 (19%) South 6 (22%) West 9 (33%) 205 Table 1.7. Breakdown of Interviewee by Characteristic (n =27) Interviewee Department Affiliation University Type Career Stage Geographic Location 1 Clinical Public Early South 2 Clinical Public Mid/Late West 3 SS/Humanities Private Mid/Late Midwest 4 Clinical Private Mid/Late West 5 SS/Humanities Public Mid/Late West 6 SS/Humanities Public Early East 7 SS/Humanities Public Mid/Late East 8 Clinical Public Early West 9 Clinical Public Early West 10 SS/Humanities Public Early West 11 SS/Humanities Public Mid/Late East 12 Clinical Public Mid/Late Midwest 13 Clinical Public Mid/Late Midwest 14 Clinical Public Mid/Late Midwest 15 Clinical Public Early West 16 Clinical Private Mid/Late South 17 SS/Humanities Private Mid/Late East 18 Clinical Private Mid/Late Midwest 19 SS/Humanities Private Early South 20 SS/Humanities Public Early West 21 SS/Humanities Public Mid/Late South 22 Clinical Private Mid/Late East 23 SS/Humanities Public Early West 24 Clinical Public Mid/Late South 25 SS/Humanities Private Mid/Late East 26 SS/Humanities Public Mid/Late South 27 Clinical Public Mid/Late East Note. SS= Social Sciences 206 Table 1.8. Differences in Topical Offerings by Characteristic Instructor Characteristics University Type Departmental Affiliation Career Stage Topics χ2, p-value χ2, p-value χ2, p-value Advance care planning .095, .757 2.917, .088 .724, .395 Bioethical issues .424, .515 1.17, .280 .113, .737 Body disposition .635, .425 .027, .869 .149, .700 Clinical practices .870, .351 2.89, .089 .005, .942 Cross-cultural issues .278, .598 2.41, .120 .019, .892 Death and grief in children .378, .539 4.48, .034* 1.07, .299 Death anxiety 4.80, .028* .027, .869 .112, .738 Death positivity movement 2.65, .103 .068, .794 .517, .472 Death systems 1.46, .227 .061, .806 1.04, .307 End-of-life care and treatment .086, .770 .236, .627 .019, .892 Euthanasia, medical-aid-in-dying .924, .336 1.01, .314 .960, .327 Funeral practices .086, .770 .764, .382 .505, .477 Grief, bereavement, and mourning 1.13, .289 .659, .417 5.67, .017* Professions in thanatology 2.55, .111 .194, .659 .302, .583 Religious/Spiritual beliefs .790, .374 1.54, 2.14 .380, .538 Suicide .055, .815 .151, .698 .004, .952 Traumatic deaths .870, .351 .215, .643 .005, .942 Understanding reactions to death 1.81, .178 4.99, .026* 5.78, .016* Note. * p < .05 207 Table 1.9. Difference in Instructor Death Anxiety by Characteristic M (SD) t value, p-value University Type Public (n = 44) 24.20 (3.65) .299, p = .029* Private (n = 12) 21.50 (3.87) Department Affiliation Clinical (n = 24) 23.50 (4.55) 4.55, p = .835 Social Sciences and Humanities (n=32) 23.72 (3.25) Career Stage Early (n =11) 24.45 (5.30) 5.48, p = .427 Mid/Late (n = 45) 23.42 (3.42) Note. * p < .05 208 Table 1.10. Joint Display of Mixed Methods Findings Quantitative Finding Qualitative Interview Findings Mixed Method Interpretation Topical Offerings Clinical instructors significantly more likely to cover death and grief in children Clinical: “The topics are attitudes toward death, historical and cultural perspectives, commemorations, learning about death, children's experience, living with life limiting illness, communication, models and places of care.” SS/Humanities: “We spend a lot more time on the actual process of dying, what goes on with the body…And then we do hospice, we do legal and political aspects of death, physician assisted death, euthanasia, near-death experiences, discussions of after life, death as punishment, and then a dying in children have been a [topic] in there before.” Concordant. Of instructors that mentioned covering topics related to children in the qualitative interviews most were teaching in a clinical department. One SS/humanities instructor mentioned covering death and grief in children as a topic but not in the current semester. SS/Humanities instructors significantly more likely to cover understanding reactions to death Clinical: No qualitative information. SS/Humanities: But like on the days when, like, for example, like the Parkland shooting, happened like we came back to class, I threw out what I was gonna talk about that day and we like, did this sort of talking through like how did you find out? Who told you? What did you notice about people's reactions. What has happened since? does it make you think about your daily life differently, and the way that, like, you know, talking about a terminal diagnosis of someone. Does that make you think about your life and your decisions or your future differently? Discordant. Only one instructor mentioned understanding reactions to death in their qualitative interview and they were teaching in the SS/humanities. Thus, this result should be taken with caution as no questions were specifically asked about understanding reactions to death in the qualitative interview. 209 Instructors in private institutions significantly less likely to cover death anxiety No qualitative information about this finding. Inconclusive. No instructors mentioned covering death anxiety in their qualitative interviews. Mid/Late career instructors significantly more likely to cover grief, bereavement, and mourning Early: “The topics are attitudes toward death, historical and cultural perspectives, commemorations, learning about death, children's experience, living with life limiting illness, communication, models and places of care.” Mid/Late: Looking at funeral practices and students get the opportunity to highlight different cultures and their rituals and the way that they cope with grief and loss. Discordant. Qualitative findings suggest that most instructors, regardless of career stage, include grief, bereavement and mourning as topics in their classroom. Mid/Late career instructors significantly more likely to cover understanding reactions to death Early: No qualitative information. Mid/Late: “But like on the days when, like, for example, like the Parkland shooting, happened like we came back to class, I threw out what I was gonna talk about that day and we like, did this sort of talking through like how did you find out? Who told you? What did you notice about people's reactions. What has happened since? does it make you think about your daily life differently, and the way that, like, you know, talking about a terminal diagnosis of someone. Does that make you think about your life and your decisions or your future differently?” Concordant. Only one instructor mentioned understanding reactions to death in their qualitative interview. Thus, this result should be taken with caution as only 33% of qualitative interviews were with early career instructors and no questions were specifically asked about understanding reactions to death. 210 Death Anxiety Instructors in private institutions had significantly lower death anxiety Public: “I think teachers need to probably be pretty firm in their in their faith, I guess you could say, or in their belief system about what death means to them, and then be able to, you know, eloquently talk about that in an insightful way, but also not to, you know, too dogmatic or anything.” Private: “It's just imperative that you have a very good self-care, practice, and by that I mean you have to move your body, you have to exercise, you have to spend time outside in nature. You have to mostly try to eat healthy, you know you have I mean meditation. Oh, my God! The research on meditation.” “I've just learned to prioritize self-care during that semester. I try to be as strategic as I can about what else is going on in the semester that I'm teaching this course. I know not to, to the extent that it's possible, I try not to load up on other stressful things.” Inconclusive. All instructors that mentioned specific self-care strategies were teaching in a private institution. However, those teaching in public institutions mentioned attending therapy and having someone to talk to about the class. One even described it being important for instructors to be firm in their faith to teach this class. Note. SS= Social Sciences 211 Table 1.11. Tangible Examples of Culturally Responsive-Sustaining Educational Principles for Thanatology Instructors Domain (Theme.Subtheme) Suggestions and Examples Treat classroom as a collaborative space, includes students in the creation of that space (1.1) - Be authentic and vulnerable in the classroom. - Allow students to set the pace or have a say in the class pace. - Be cognizant of the physical space (e.g., smaller rooms, moveable chairs, lower enrollment). Set standards, rules, and regulations for mutually agreed upon norms and expectations (1.2) - Take time at the beginning of the semester to set ground rules and mutually agreed upon expectations (e.g., don’t apologize for tears, respect all opinions) - Allow for choice and flexibility. - Use trauma-informed teaching practices. Incorporate current death events (i.e., COVID-19, controversial debates like aided death or bioethical issues) and tough topics (2.1) - Use current death events in class (e.g., COVID-19, Mass Death Events). - Apply concepts to common case studies include Brittany Maynard, Marlise Muñoz, and Terri Schiavo. - Consider using a moderated debate to discuss Medical Aid in Dying or other controversial issues. - Consider including tough topics like euthanasia, genocide, mass deaths, organ donation, suicide, stigmatized deaths, and violent deaths. Incorporate student led projects in the classroom to provide opportunity to teach peers (2.2) - Facilitate group presentations on cultural approaches to death and dying. - Include peer-facilitated events (e.g., Death Café, Death Faire). Utilize culturally specific examples within instruction and or tangible examples/resources (3.1) - Include diverse imagery and content. - Some tangible suggestions: From Here to Eternity by Caitlin Doughty (book), The Farewell (movie), and Death and Bereavement Across Cultures by Parkes et al. (textbook). 212 Take field trips or have guest speakers related to course content (3.2) - Take field trips. o Death Café event o Cadaver lab o Campus “death” walk o Cemetery (regular and green burial) o Crematorium o Funeral home o In-patient Hospice o Medical examiner’s office o Mortuary - Include guest lectures. o A bereaved person o Bioethicist o Child life specialist o Death doula o Grief therapist o Homicide detective o Hospice workers (i.e., nurses, social workers, volunteer in Hospice Prison System) o Instructor from Latin American and Caribbean Studies o A medium o Near-death experience survivor o Organ donation expert o Person with a terminal illness o Various religious leaders Uses materials that represent multiple identities (3.3) - Incorporate effective mediums for materials. o Documentaries o Films o Non-fiction/Fiction books o Podcasts o Poetry o Popular media articles o Scholarly readings o Textbooks o Videos Engage in professional learning activities and regular DEI training (4) - Engage in professional learning activities and regular DEI training. - Take ownership and accountability after making mistakes. - Use mistakes as an opportunity to learn and grow. 213 Table 2.1. Search Terms Boolean Phrases Where Explanation “death” OR “dying” OR “end-of-life” OR “medical aid in dying” OR “voluntary euthanasia” OR “death with dignity” OR “physician-assisted suicide” OR “death literacy” OR “physician aided death” OR “terminal sedation” OR “right to die” Keyword (identifier) Terms target death-related literature AND “health professional” OR “student” OR “medical school” OR “nursing” OR “pharmacy” OR “social work” OR “counseling” OR “graduate school” Abstract Terms target health professional programs of interest AND “education” OR “program” OR “school” Anywhere Targets health professional training/education phase AND “intervention” OR “training” OR “curriculum” OR “evaluation” Anywhere Terms target intervention aspect 214 Table 2.2. Characteristics of Included Studies (N =16) Characteristics Number of Studies (%) Year 2014 1 (6.25%) 2015 6 (37.5%) 2016 3 (18.75%) 2017 1 (6.25%) 2018 1 (6.25%) 2019 2 (12.5%) 2020 1 (6.25%) 2023 1 (6.25%) Geographic Location† Northeast 3 (18.75%) Midwest 5 (31.25%) South 7 (43.75%) West 3 (18.75%) Setting Medical 8 (50%) Nursing 6 (37.5%) Social Work 2 (12.5%) Counseling 2 (12.5%) Pharmacy 1 (6.25%) Interdisciplinary† 3 (18.75%) Type of Course Elective 7 (43.75%) Required 7 (43.75%) Extra Training 2 (12.5%) Included cultural humility Yes 7 (43.75%) Note: †Study could occur in multiple locations or in multiple settings, percentage calculated out of total. 215 Table 2.3 Description of Included Studies (N = 16) Author (Year) Journal Location of Study Theory Setting Participants Type of Course Study Design Data Analysis Atayee et al., (2018) American Journal of Hospice & Palliative Medicine Northeast Midwest West - Pharmacy (n = 89) Mostly 3rd year students, twice as many females as male Elective Quasi-Experimental Paired T-Test, ANOVA Day et al., (2015) Academic Medicine West Adult Learning Theory Medical (n = 119) 3rd year students, majority female Required Quasi-Randomized control trial Paired T-Test Erickson et al., (2015) American Journal of Hospice & Palliative Medicine South - Medical (n = 118) Nursing (n = 97) 3rd year, majority female Required Quasi-Experimental Paired T-Test Erlich et al., (2023) Family Medicine Northeast Experiential Empathy Medical (n = 548) 3rd year students Required Qualitative Research Thematic Analysis Glover et al., (2017) American Journal of Hospice & Palliative Medicine South - Nursing (n = 92) Senior nursing students Elective Quasi-Experimental Non-parametric Tests Head & Smith (2016) Journal of Social Work in End-of-life & Palliative Care South Experiential Learning Theory Social Work (n =78) No description Elective Mixed Methods Descriptives, Content Analysis 216 Kerr et al., (2020) Health Communication Midwest - Medical (n = 77) 2nd year, female Extra Training Quasi-Experimental Descriptives Lippe & Becker (2015) Nursing Education Perspectives South Social Cognitive Theory Nursing (n = 118) Final semester students Required Quasi-Experimental ANOVAS, Factor Analysis Loerzel & Conner (2016) American Journal of Hospice & Palliative Medicine South - Nursing (n =36) Majority female, Christian, and had not taken another class on death and dying Elective Qualitative Research Content Analysis Nash et al., (2016) Nursing Ethics South - Nursing (n =15) Honors nursing students Required Qualitative Research Descriptives, Content Analysis Nussbaum et al., (2019) American Journal of Hospice & Palliative Medicine Midwest - Medical (n = 223) 3rd year, majority white Elective Mixed Method Paired Sample T-Tests, Content Analysis Servaity-Seib & Parikh (2014) Death Studies Midwest - Counseling (n = 25) Majority women, white Required Case study One-way MANCOVA Sinha et al., (2015) Journal of Interprofessional Care South - Medical (n = 18) Nursing (n = 19) 3rd year medical, 3rd year nursing, majority female Extra Training Quasi-Experimental Non-parametric Tests 217 Strano-Paul et al., (2015) Journal of Palliative Care Northeast - Medical (n = 120) 3rd year Required Qualitative Research Grounded Theory Content Analysis Thieleman & Cacciatore (2019) Social Work Education West Terror Management Theory Social Work Counseling (n =111) Master’s level, some doctoral Elective Quasi-experimental T-tests, Correlation Wechter et al., (2015) American Journal of Hospice & Palliative Medicine Midwest - Medical (n =166) 1st year students, majority male Elective Quasi-Experimental Descriptives 218 Table 2.4. Intervention Details, Death Concepts, and Key Findings of Included Studies (N = 16) Author (Year) Setting Intervention Components and Dosage/Duration Death Concepts Key Findings Addressed Culture Atayee et al., (2018) Pharmacy Didactic elective course • Script concordance testing (applied case study) • End-of-life (EOL) care options • Pain/Symptom Management • Statistically significant improvement in confidence with palliative care skills. • Some improvement in case study application pre to post. No Day et al., (2015) Medical “Doctoring and eDoctoring” Course 3, 3-hour small group sessions • Didactic videos • Peer discussion • Standardized patient encounters • Access to care • Advance Care Planning • Decision-making • Giving bad news • Grief • Hospice care • Medical aid in dying • Organ donation • Symptom/Pain management • No difference between in person and online doctoring course. • Self-efficacy and knowledge improved in both groups. Yes, cases included cultural components 219 Erickson et al., (2015) Medical Nursing 90-minute Interprofessional Education Workshop • Didactic lecture • Simulation with standardized patient • EOL communication • Interprofessional communication and teamwork • Post workshop, both medical and nursing students had more positive attitudes toward teamwork. • Nursing students also had improved confidence in EOL communication. No Erlich et al., (2023) Medical Experiential learning activity • Complete advance directive • Reflective writing • Advance Care Planning (ACP) • Increased patient empathy, • Better knowledge about EOL and ACP No Glover et al., (2017) Nursing 2-Day ELNEC Course • 6 modules • Contemporary film reflection • ACP game, Go Wish • Case study • Communication • Culture and ethics taught throughout • Loss, grief, and bereavement • Pain/Symptom Management • Nursing care at EOL Prep for care at time of death • Improved knowledge about EOL in palliative care, symptom/pain management, communication, and grief, loss, and bereavement. Yes, culture integrated into all taught modules Head & Smith (2016) Social Work Didactic online elective course • 14 Topical Modules • Recorded lectures and readings • 6 contemporary film reflections • Communication • Cultural and religious Beliefs and customs • Dying experience • Meeting EOL needs of patients • Ethics • Majority of students (71%) felt they learned as much online as they would have learned in a face-to-face learning situation. Yes, topical modules focused on cultural and religious beliefs and customs 220 • Grief • Self-care • Traumatic loss • Very positive reactions to course, many students reported film watching was the best part. Kerr et al., (2020) Medical Confessions of a reluctant caregiver palliative education program • Watch stage reading of play • Talkback session • Caregiver experience • Grief • Significantly more comfort with understanding EOL and discussing these issues. No Lippe & Becker (2015) Nursing Two-hour simulation in elective course • Pre/debriefing • Live actor/student volunteer • Caring for “dying patient” simulation • Caring for dying people • Communicating with family • Significant improvements in 14/15 competencies. • Gains in self-awareness, communication skills, lowered anxiety, greater clarity on nurses’ role in EOL. No Loerzel & Conner (2016) Nursing Online elective course- two weekly tasks • Reflective writing • Didactic learning and discussion with peers • Experiential learning o Write obituary o Plan funeral o Interview people with and without AD • Communication • Cultural and spiritual differences • Demographics of death • Ethical decision-making • Legality • Loss, grief, and bereavement • Increased knowledge and comfort with EOL but fears still remained. Yes, specific learning on cultural and spiritual differences 221 Nash et al., (2016) Nursing Training and workshop in elective class • Training: ethics presentation, simulated patient practice • Advance Directive (AD) Workshop: met face to face with houseless person to help complete AD, reflective writing • Advance directives/Advance care planning • Demographics of death • Ethics • After workshop few students reported anxiety and fear of completing advance directives with houseless persons. Yes, all occurred in context of houselessness Nussbaum et al., (2019) Medical Required ACP module • Didactic lecture • In-home interview with older “trained patient” • Group discussion and debrief • Reflective writing • Advance care planning • Communication • EOL decision-making • Health provider role in EOL • Legality • Statistically significant increase in ACP skills. • Increased confidence in explaining ACP concepts. No Servaity-Seib & Parikh (2014) Counseling Group Counseling Course with Service Learning • Family-based grief intervention • 8 class periods: didactic material • 8 class periods: facilitate group counseling • Awareness of community services • Coping • Grief process • Working with grieving individuals • Significant increases in group facilitation skills, learning, ethical practice, cooperation with co-facilitators, comfort discussing grief, and knowledge of grief. • Qualitative findings suggest a valuable experience. No Sinha et al., (2015) Medical Nursing Pilot of Three workshops (Heart of Medicine) • Coping • Difficult conversations Dying process • Post intervention, both medical and nursing students had No 222 • Art Museum observation and peer discussion • Didactic lecture and discussion with family of hospice patients and workers • Didactic lecture and standardized patient encounter • Palliative care and hospice referral • Symptom/Pain management significantly better knowledge, comfort, teamwork, and coping skills and EOL. Strano-Paul et al., (2015) Medical Half-day IPE workshop • Didactic learning sessions • Home hospice experience with direct caregiving • Reflective writing • Caring for dying people • Communication • Pain/Symptom Management • Students expressed reverence for home hospice as an end-of-life option. • Acceptance of death and dying. • Emphasized importance of personal relationship. No Thieleman & Cacciatore (2019) Social Work Counseling 5-day elective course, 40 hours over 3 weeks • Reflections • Peer interaction with mindfulness exercises • Panel of experts (bereaved parents) • Bereavement • Grief • Traumatic loss • Statistically significant increase on empathy assessment and mindfulness. • Qualitative findings show increased awareness of grief, deepened connection to material and an increase in professional preparation. Yes, an alternative assignment paper on cultural views of mourning Wechter et al., (2015) Medical Observational experience • Independent reading • Cultural, religious, and ethical issues influence • Better attitudes toward working with dying Yes, cultural, religion and 223 • Discussion with physicians • Patient & family interaction • Reflective writing on end-of-life decision making • Identify patient values people post intervention. • Students reported they found experience the helpful. • Wanted more patient contact and a longitudinal experience. ethics influence on EOL decision making was central to this intervention Notes: ACP = Advance care planning; AD = Advance Directives; ELNEC = End-of-Life Nursing Education Consortium; EOL = End-of-life; IPE = Interprofessional Education. 224 Table 2.5. Study and Death Literacy Construct Author (Year) Setting Practical Knowledge Experiential Knowledge Factual Knowledge Community Knowledge Atayee et al., (2018) Pharmacy X Day et al., (2015) Medical X X Erickson et al., (2015) Medical Nursing X Erlich et al., (2023) Medical X X Glover et al., (2017) Nursing X X Head & Smith (2016) Social Work X X Kerr et al., (2020) Medical X X Lippe & Becker (2015) Nursing X X Loerzel & Conner (2016) Nursing X X X Nash et al., (2016) Nursing X X X X Nussbaum et al., (2019) Medical X X X Servaity-Seib & Parikh (2014) Counseling X X X X Sinha et al., (2015) Medical Nursing X X X Strano-Paul et al., (2015) Medical X X X Thieleman & Cacciatore (2019) Counseling Social Work X X Wechter et al., (2015) Medical X X X 225 Table 2.6. Elements of Death Literacy Domains Present in Included Studies (N=16) Factual Practical Experiential Community • Advance care planning • Caregiver experience • Caring for the dying • Demographics of death • Dying process • EOL decision making • EOL options • Ethics/Legality • Grief, bereavement, coping • Organ donation • Pain/Symptom Management • Role of the health provider • Self-care for health provider • Traumatic deaths • Communicating with dying patient • Communicating with family • Completing advance directives • Deliver difficult news • How to communicate with grieving individuals • How to talk about end of life wishes • Advance care planning conversation • Direct caregiving experiences • Conduct end of life planning conversations • Facilitating grief group • Awareness of available community services • Referring grieving families • Knowledge of community services and supports 226 Table 2.7. Country of Excluded (non-US) Studies Country Number of Studies Turkey 11 China 5 United Kingdom 3 Spain 3 Australia 2 Bolivia 2 Germany 2 Canada 1 Czech Republic 1 Cyprus 1 Israel 1 Mexico 1 New Zealand 1 South Korea 1 Note: Two studies occurred in multiple countries. 227 Table 3.1. Sample Demographics Characteristic (n=1201) N (%) Relation to Decedent Daughter 425 (35.4%) Spouse 211 (17.6%) Son 180 (15.0%) Formal Caregiver 135 (11.2%) Sister 33 (2.7%) Niece 32 (2.7%) Other Nonrelative 29 (2.4%) Friend 26 (2.2%) Granddaughter 23 (1.9%) Age at Death 70-74 61 (5.1%) 75-79 137 (11.4%) 80-84 240 (20.0%) 85-89 272 (22.6%) 90+ 489 (40.7%) Gender Male 489 (40.7%) Female 712 (59.3%) Race White, non-Hispanic 848 (70.6%) Black, non-Hispanic 264 (22.0%) AIAN, NH, PI, Asian, Other 23 (1.9%) Hispanic 64 (5.3%) More than one 2 (.2%) Live alone at death Yes 325 (27.1%) No 876 (72.9%) Geographic Location Northeast 197 (16.4%) Midwest 293 (24.4%) South 492 (40.9%) West 219 (18.3%) Round of Data Collection Wave 9 (2019) 347 (28.9%) Wave 10 (2020) 308 (25.6%) Wave 11 (2021) 323 (26.9%) Wave 12 (2022) 223 (18.6%) Notes. AIAN= Alaskan Indian/American Native; NH = Native Hawaiian; PI= Pacific Islander. 228 Table 3.2. Indicator Frequencies from Analytic Sample Indicator N (%) Help with pain Yes pain, no help 61 (5.1%) Yes pain, yes help 803 (66.9%) No pain 288 (24.0%) Missing 49 (4.1%) Help with anxiety Yes anxiety, no help 193 (16.1%) Yes anxiety, yes help 446 (37.1%) No anxiety 513 (42.7%) Missing 49 (4.1%) Hospice use No 487 (40.5%) Yes 443 (36.9%) Missing 271 (22.6%) No decisions about care without input No 1055 (87.8%) Yes 91 (7.6%) Missing 55 (4.6%) Unwanted care Yes 118 (9.8%) No 1035 (86.2%) Missing 48 (4.0%) Informed about condition Sometimes/Never 90 (7.5%) Usually 136 (11.2%) Always 947 (78.9%) Missing 28 (2.3%) More than one doctor Yes 728 (60.6%) No 410 (34.1%) Missing 63 (5.2%) Clear doctor in charge No 149 (12.4%) Yes 557 (46.4%) Missing 495 (41.2%) Religious beliefs No 515 (42.9%) Yes 452 (37.6%) Missing 234 (19.5%) Treated with respect Sometimes/Never 32 (2.7%) Usually 114 (9.5%) Always 1016 (84.6%) Missing 39 (3.2%) 229 Table 3.3. Outcome Frequencies Outcome N (%) Place of death Home 493 (41.0%) Third Space (i.e., Nursing Home, Hospice Residence) 401 (33.4%) Hospital 307 (25.6%) 230 Table 3.4. Fit Indices for Model Specification Model % hit Log-likelihood G2 AIC BIC CAIC Adj. BIC Entropy df 1 Class 100 -6412.10 1743.68 1771.68 1842.95 1856.95 1798.48 1.00 5169 2 Class 100 -6193.18 1305.84 1363.84 1511.48 1540.48 1419.36 .74 5154 3 Class 98 -6074.96 1069.39 1157.39 1381.39 1425.39 1241.63 .61 5139 4 Class 89 -6043.50 1006.48 1124.48 1424.84 1483.84 1237.43 .66 5124 5 Class 30 -6024.55 968.57 1116.57 1493.30 1567.30 1258.24 .64 5109 6 Class 19 -6003.33 926.13 1104.13 1557.22 1626.22 1274.52 .70 5094 N = 1201 G2 deviance statistic, AIC Akaike information criteria, BIC Bayesian information criterion, CAIC Bozdogan’s consistent AIC, Adj. BIC adjusted BIC, df degrees of freedom 231 Table 3.5. Class Membership and Item Response Probabilities for 4 Class Model Discordant Death Controlled Death Harmonious Death Comforted Death Percent of Sample 6.5% 46.3% 34.9% 12.3% Comfort Pain, no help Pain, help .13 .60 .01 .84 .10 .46 .04 .90 No pain .28 .16 .43 .06 Anxiety, no help Anxiety, help .39 .09 .08 .55 .20 .12 .28 .70 No anxiety .51 .37 .68 .02 Control No decisions made without input (No) .35 .04 .02 .28 (Yes) .65 .96 .98 .72 Did not received unwanted care (No) (Yes) .24 .76 .05 .95 .05 .95 .40 .60 Informed about condition (Sometimes/Never) .62 .01 .04 .17 (Usually) .22 .04 .12 .35 (Always) .16 .95 .85 .48 Connectedness Hospice use (No) (Yes) .39 .61 .84 016 .18 .83 .39 .61 More than one doctor (No) .25 .45 .37 .05 (Yes) .75 .55 .63 .95 Clear doctor in charge (No) (Yes) .97 .03 .06 .94 .13 .87 .42 .58 Religiosity discussed (No) (Yes) .32 .68 .72 .28 .23 .72 .62 .38 Treated with respect (Sometimes/Never) .27 .01 .01 .03 (Usually) .27 .03 .04 .45 (Always) .46 .96 .95 .52 232 Table 3.6. Living Alone as a Predictor of Membership in Latent Class Discordant Death Controlled Death Harmonious Death Comforted Death Beta 0.41 -0.56 Ref 0.03 Odds Ratio 1.50 .57* Ref 1.03 95% Confidence Interval 0.77, 2.92 0.38, 0.85 Ref 0.61, 1.75 Notes. *=significant 95% CI; Likelihood ratio chi-squared test p = .001. 233 Table 3.7. Race as a Predictor of Membership in Latent Class Discordant Death Controlled Death Harmonious Death Comforted Death White, non-Hispanic1 Beta 0.94 0.55 Ref 0.43 Odds Ratio 2.56* 1.73* Ref 1.54 95% Confidence Interval 1.16, 5.64 1.17, 2.57 Ref 0.89, 2.66 Black, non-Hispanic2 Beta -0.52 -0.55 Ref -0.64 Odds Ratio 0.59 0.58* Ref 0.53* 95% Confidence Interval 0.26, 1.33 0.37, 0.88 Ref 0.28, 0.99 Hispanic, Other3 Beta -1.83 -0.22 Ref 0.09 Odds Ratio 0.16 0.80 Ref 1.10 95% Confidence Interval 0.01, 1.36 0.41, 1.53 Ref 0.49, 2.47 Notes. *= significant 95% CI; 1Likelihood ratio chi-squared test p = .015; 2Likelihood ratio chi-squared test p =.047; 3Likelihood ratio chi-squared test p = .15. 234 Table 3.8. Geographic Location as a Predictor of Membership in Latent Class Discordant Death Controlled Death Harmonious Death Comforted Death Northeast1 Beta 0.01 -0.58 Ref 0.53 Odds Ratio 1.01 0.56* Ref 1.70 95% Confidence Interval 0.45, 2.24 0.35, 0.91 Ref 0.95, 3.05 Midwest2 Beta -0.41 0.49 Ref 0.32 Odds Ratio 0.67 1.64* Ref 1.37 95% Confidence Interval 0.23, 1.97 1.07, 2.52 Ref 0.77, 2.44 South3 Beta 0.19 -0.17 Ref -0.40 Odds Ratio 1.21 0.85 Ref 0.67 95% Confidence Interval 0.62, 2.33 .59, 1.22 Ref 0.40, 1.11 West4 Beta -0.06 0.14 Ref -0.38 Odds Ratio 0.94 1.15 Ref 0.69 95% Confidence Interval 0.39, 2.24 0.74, 1.80 Ref 0.32, 1.46 Notes. *= significant 95% CI; 1Likelihood ratio chi-squared test p =.001; 2Likelihood ratio chi-squared test p =.039; 3Likelihood ratio chi-squared test p = .324; 4Likelihood ratio chi-squared test p = .465. 235 Table 3.9. Association between Latent Class and Place of Death by Covariate Place of Death Home Third Space Hospital Omnibus Test Covariate/Latent Class Probability (SE) Probability (SE) Probability (SE) Wald Statistic, p-value Did not live alone* 61.08, p < .001 Discordant .332 (.091) .431 (.096) .236 (.088) Controlled .629 (.027) .316 (.027) .055 (.020) Harmonious .233 (.038) .243 (.036) .523 (.040) Comforted .174 (.058) .426 (.066) .400 (.065) Lived alone* 9.92, p = .128 Discordant .307 (.108) .386 (.116) .307 (.111) Controlled .462 (.059) .517 (.060) .021 (.038) Harmonious .330 (.055) .235 (.053) .435 (.053) Comforted .118 (.074) .526 (.098) .357 (.092) White, non-Hispanic* 37.40, p < .001 Discordant .330 (.075) .351 (.077) .319 (.075) Controlled .595 (.030) .380 (.029) .025 (.018) Harmonious .245 (.037) .264 (.037) .491 (.041) Comforted .209 (.058) .477 (.066) .314 (.060) Black, non-Hispanic* 16.12, p = .013 Discordant .661 (.052) .257 (.047) .082 (.034) Controlled .668 (.063) .281 (.056) .050 (.046) Harmonious .258 (.053) .239 (.050) .502 (.057) Comforted .234 (.044) .308 (.047) .458 (.051) Northeast Region* 16.11, p = .013 Discordant .205 (.143) .539 (.175) .255 (.158) Controlled .619 (.077) .346 (.073) .035 (.047) Harmonious .197 (.062) .274 (.065) .530 (.071) Comforted .154 (.078) .480 (.097) .366 (.092) Midwest Region* N/A Discordant .516 (.220) .473 (.218) .011 (.146) Controlled .555 (.048) .449 (.047) - Harmonious .193 (.070) .262 (.072) .546 (.079) Comforted .144 (.096) .372 (.110) .484 (.113) South Region 34.58, p < .001 Discordant .256 (.093) .443 (.104) .301 (.098) Controlled .581 (.042) .351 (.040) .068 (.029) Harmonious .321 (.048) .202 (.043) .477 (.049) Comforted .075 (.068) .579 (.096) .346 (.090) West Region 11.71, p = .069 Discordant .403 (.177) .193 (.144) .404 (.177) Controlled .699 (.055) .260 (.049) .040 (.038) Harmonious .259 (.074) .241 (.067) .500 (.078) Comforted .196 (.140) .275 (.138) .529 (.158) Notes. SE= Standard error, * = denotes significant covariate in Phase 2, N/A= omnibus test not available due to low cell size. Hispanic/Other not a large enough group to conduct this analysis with. 236 Figures Figure X.1. Figure X1. Key elements of life course theory (Giele & Elder, 1998). 237 Figure X.2. Figure X.2. Upstream to downstream dissertation approach. 238 Figure 1.1. Figure 1.1. Convergent parrallel mixed methods design components (QUAL + QUAN) (Plano Clark, 2019). 239 Figure 2.1. Figure 2.1. Life course theory applied to an equitable death across the lifespan. 240 Figure 2.2. Figure 2.2. PRISMA flow diagram. 241 APPENDICES Appendix A: Death Education National Curriculum Demographic Survey Do you teach an end-of-life or death-related course (i.e., Death and Dying, Thanatology, Palliative Care) at a college or university in the United States? o Yes o No Consent: “Death Education Needs Assessment & Normalizing Conversations about End-of-Life" Introduction: Cory Bolkan, PhD, Associate Professor of Human Development at WSU and Raven Weaver, PhD, Assistant Professor of Human Development at WSU, are requesting your participation in a research study on knowledge, attitudes, and perceptions about issues related to death, dying, and grief. The study title is “Death Education Needs Assessment & Normalizing Conversations about End-of-Life." Study purpose: The aim of this research is to utilize key informant interviews to guide future directions for best practices in normalizing death education, identifying evidence-based educational interventions in thanatology, and increasing access and preparation for diverse students - especially those who will likely be confronted with death and grief as a regular part of their future careers in health and human services. To participate, you must be at least 18 years old and teach a death-related course at a college or university in the United States. This study has been approved for human subject participation by the Washington State University Institutional Review Board. What we ask participants to do: If you participate, you will read and complete a consent form. After this, participants will be asked to complete two tasks: • Survey: Participants will be asked to complete a short survey (10–15 minutes) that asks questions about their university, professional characteristics, and experience teaching a death and dying course. • Follow-Up Zoom Interview: Participants will be invited to participate in a semi-structured Zoom interview (30–45 minutes) about their course and teaching, successes and challenges in normalizing death education and their experiences. Benefits to participants: Taking part in this study will give you a chance to share views on a topic that is not widely discussed in the United States. The information you share will help advance scientific knowledge about how to reduce avoidance of these topics and increase access to education and training for students, especially for those who anticipate pursuing helping careers (e.g., social work, human services, health care, counseling). You may request a summary of the results. Risks to participants: This research involves few risks. You do not have to answer questions that you do not wish to answer. Also, you may stop participating in the study at any time after you begin. It is possible that someone could discover you have been in this research study. To minimize these risks, 242 we de-identify all data and store it on password-protected computers in locked offices. Your data will only be viewed by the investigators. Who sees your information: The information you provide will be kept private and confidential to the extent allowed by federal and state law. Your name will not be associated with the results in any way. We identify your information by a code number that we link to a separate list with your name and contact information for purposes of sending you study information if you request it. Only trained research staff have access to study information. Ethical guidelines require that anything related to your identity and your contact information be kept confidential. Published results will not identify you, and your name will not be associated with findings. Research materials will be destroyed five years after publication of results. Costs or payments for being in this study: There are no costs to you for taking part in this study. If participants choose to participate in and complete the follow-up Zoom interview (separate link available in the online survey), then they can elect to enter a drawing for a $100 gift card upon completion of the interview. Who to contact with questions: Please contact Dr. Bolkan at 360-546-9336 or bolkan@wsu.edu Your rights as a research study volunteer: Your participation in this research is completely voluntary. You may choose not to participate. There will be no penalty to you if you choose not to take part. You may choose to skip questions or stop participating at any time after you begin. You may contact the WSU IRB with questions about your rights as a study volunteer or to report a concern or complaint about this study: 509-335-7646 or email irb@wsu.edu or regular mail at: Neil 427, PO Box 643143, Pullman, WA 99164-3143. Your voluntary consent means: If you click “Yes” to participate, it means: You are at least 18 years old You understand the information provided on these pages You understand that you can contact the researcher via phone or email You believe you understand the research study and the potential benefits and risks You understand you may download a copy of this file here Informed Consent Document o Yes, I agree to participate o No, I do not agree to participate 243 University Characteristics Which of the following statements best describes your institution? o 4-year public university o 4-year private university o Junior college or community college o Medical School o Religious Institution o Other (please describe): ___________________________________________ How many students are enrolled at your institution? o Less than 1,000 o 1,000 - 5,000 o 5,000 - 10,000 o 10,000 - 20,000 o 20,000 - 40,000 o 40,000 or more Course Characteristics Do you teach at a Land-grant institution or in a Human Development/Family Studies program? o Yes o No What is the name of the course you teach? __________________________________________ In which department is this course offered? __________________________________________ About how many times have you taught this course? ___________________________________ How is this course usually delivered? (i.e., pre-pandemic) o In-person o Online o Hybrid o Other (please specify): __________________________________________________ Is this course considered a requirement or an elective for students in the major/discipline in which it is offered? o Required o Elective On average, about how many students are enrolled in this course? ________________________ 244 About how often is this course offered? o Every other year o Once a year o Every semester o Other __________________________________________________ To what extent are the following topics discussed in your course? Not at all Addressed somewhat Addressed in depth May consider including Advance care planning o o o o Bioethical issues and controversies (e.g., organ transplantation) o o o o Body disposition (e.g., cremation, green burials, sky burials, etc.) o o o o Clinical practices (e.g., pronouncing death, informing family of patient death, current practices and trends in care and treatment of individuals with terminal illness) o o o o Cross cultural issues related to death (e.g., ceremonies, rituals, practices) o o o o Death and grief in the lives of children o o o o Death anxiety o o o o Death positivity movement o o o o Death systems o o o o End-of-life care and treatment o o o o Euthanasia, medical-aid-in-dying, or controversies surrounding right to die o o o o Funeral practices o o o o Grief, bereavement, and mourning o o o o Professions in thanatology o o o o Religious and spiritual beliefs about death or afterlife o o o o Suicide o o o o 245 What is the best piece of advice you would offer for an instructor new to teaching or developing a death education course? ___________________________________________________________ Instructor Characteristics Is there anything else you would like to share about your experience in teaching this course (e.g., thoughts on how to increase enrollment/offering; unique teaching strategies/approaches; challenges/opportunities you have faced in the context of this course)? ________________________________________________________________ Please describe the highest degree you have attained: (e.g., PhD in Psychology; MS in Sociology; MD, JD, etc.): ______________________________________________________ What is your appointment at your institution? o Tenure track faculty - professor o Tenure track faculty - associate professor o Tenure track faculty - assistant professor o Non-tenure track faculty o Adjunct or affiliate or part-time faculty o Graduate student o Other (please specify): __________________________________________________ What responsibilities are associated with your academic appointment? Assign percentages for each section below. These should add up to 100%. Teaching: _______ Research: _______ Clinical: _______ Service: _______ Other (please specify): _______ Total: ________ Traumatic deaths o o o o Understanding reactions to death o o o o Other (please specify): o o o o Other (please specify): o o o o 246 At what stage of your academic career would you consider yourself? o Graduate student (e.g., currently enrolled in an institution). o Recent graduate or post doc (e.g., within five years post-PhD or highest equivalent terminal degree). o Early career (e.g., within 10 years of receiving PhD or highest equivalent terminal degree). o Middle career (e.g., within 20 years of receiving PhD or highest equivalent terminal degree). o Senior academic (e.g., experienced and an established leader in your field). Instructions. The next set of statements relates to the course you teach regarding end-of-life or death-related issues. With this class in mind, please respond to the following questions: Strongly Disagree Disagree Agree Strongly Agree I feel prepared to teach this class. o o o o I feel uncomfortable teaching this class. o o o o This class is important for students to take. o o o o I find this class enjoyable to teach. o o o o Students generally report learning a lot and enjoying this class. o o o o I would like more resources or teaching activities for this class. o o o o It is challenging to get students to enroll in this course. o o o o This is my favorite course to teach. o o o o Instructions: The next set of questions are related to death anxiety. For each of the following items, indicate your response according to the following scale Not at all Somewhat Very much Do you worry about dying? o o o Does it bother you that you may die before you have done everything you wanted to do? o o o 247 Do you worry that you may be very ill for a long time before you die? o o o Does it upset you to think that others may see you suffering before you die? o o o Do you worry that dying may be very painful? o o o Do you worry that the persons closest to you won't be with you when you are dying? o o o Do you worry that you may be alone when you are dying? o o o Does the thought bother you that you might lose control of your mind before death? o o o Do you worry that expenses connected with your death will be a burden to other people? o o o Does it worry you that your will or instructions about your belongings may not be carried out after you die? o o o Are you afraid that you may be buried before you are really dead? o o o Does the thought of leaving loved ones behind when you die disturb you? o o o Do you worry that those you care about may not remember you after your death? o o o Does the thought worry you that with death you may be gone forever? o o o Are you worried about not knowing what to expect after death? o o o 248 Demographics What is your current age? _________________________________ What is your race or ethnicity? Choose all that apply. ▪ American Indian or Alaskan Native ▪ Asian ▪ Black or African American ▪ Hispanic, Latino/a, Chicano/a ▪ Native Hawaiian or Other Pacific Islander ▪ White ▪ Other __________________________________________________ How would you describe your gender? o Male (including transgender men) o Female (including transgender women) o Prefer to self-describe (e.g., non-binary, gender-fluid, agender) please specify: ________ o Prefer not to say Follow up Interview Would you be willing to participate in a follow-up Zoom interview to further discuss the themes in this survey and learn from key informants, like you, to guide future directions for best practices in normalizing death education, identifying evidence-based educational interventions, and increasing access and preparation for diverse students (especially those who will likely be confronted with death and grief as a regular part of their future careers)? In appreciation of the extra time in participating in a longer interview, participants will be entered in a drawing for an opportunity to win a $100 gift card. If interested, please use the link on the next page to schedule your follow-up interview. This information will not be connected to your survey responses in anyway. o Yes o No 249 Appendix B: Semi-Structured Interview Guide If the participant agrees and signs the consent form, the interviewer will begin by asking, “Are there any questions you have before we begin?”. The interviewer will also ask to confirm “Are you okay with audio/video recording of this interview?”. Interview questioning will begin very broad moving then to more specific probes depending on the participants’ responses. The semi-structured interview will be the same for either one-on-one interviews or focus group interviews (format will be dependent on participant’s choice). SCRIPT: We appreciate you taking the time to talk with us. The purpose of this interview is to learn from key informants, like you, to guide future directions for best practices in normalizing death education, identifying evidence-based educational interventions in thanatology, and increasing access and preparation for diverse students - especially those who will likely be confronted with death and grief as a regular part of their future careers in health and human services. • Very briefly, tell us about your students in this course (e.g., level, specialty area, anticipated careers) and their average evaluations of the course (e.g., major complaints/compliments, generally positive/negative). • Now, very briefly, tell us about your course (e.g., how it is structured, types of assignments, topics covered). Probe: o If you have taught the course in more than one format, what did you see as the benefits and drawbacks in terms of student learning and experience and instructor experience for each format? (e.g., moving from in-person to online/hybrid). Next, we’d like to get your perspectives on challenges and opportunities for death education: • What do you like most about teaching this course? Probes: o What benefits, if any, have you experienced for students? o What benefits, if any, have you experienced for yourself? • What do you like least about teaching this course? Probes: o What challenges have you or your students faced, if any? o Have you personally faced any emotional challenges when teaching this course and if yes, how do you cope with it? ▪ How do you think educators can best handle the high emotional toll of the work? Do you feel that educators should be required to have specific 250 qualifications/training/backgrounds (e.g., MSW, clinical training)? Why or why not? • What advice would you have to prepare educators for teaching these courses? • What are your thoughts on improving and expanding death education? o In particular, how do you address diverse populations and diverse experiences in your course content? Probes: o For example, there are many disparities in access to healthcare that also emerge in death care; much of EOL and death/dying remains White centric. Is this something you have considered in your teaching? ▪ How do you think access to death education can be enhanced, especially for diverse students and those who will likely be confronted with death/grief as part of their future careers (e.g., psychology, human services, medicine, education) • Are you familiar with the “death positivity” movement? o If no, offer the following description: the death-positive movement is a social and philosophical movement that encourages people to speak openly about death, dying, and corpses. The movement seeks to eliminate the silence around death-related topics, decrease anxiety surrounding death, and encourages more diversity in end-of-life care options available to the public • If yes, ask: What do you see as best practices for normalizing death education? Probes: o What evidence-based educational interventions in this area are you familiar? • Please tell us about one (or more) course activity/assignments you find to be effective for teaching death and dying and describe why you feel it’s effective. Would you be interested in staying in touch for future resources/information sharing? (e.g., we have ideas about compiling a book with expert contributors; other types of collaborations that emerge) (CONFIRM EMAIL HERE) SCRIPT: Thank you for your time and willingness to share about your experiences with teaching about death and dying. We will be following up with an email and if willing, ask that you share a copy of your syllabus and course calendar. We are happy to share our course syllabus and course calendar, as well as offer up the report of this research, too. This will allow us to further understand the state of the thanatology field. 251 Appendix C: Data Charting form for Scoping Review GENERAL INFORMATION Title: Lead Author Last Name: Year of Publication: Name of Scientific Journal: Which state(s) did the study take place? CHARACTERISTICS OF INCLUDED STUDY Aim/purpose(s) of study: Study Design ⃝ Randomized control trial ⃝ Quasi-experimental ⃝ Qualitative research ⃝ Other: Theory (if utilized): Participants □ Medical Students □ Nursing □ Social Work □ Counseling/Psychology □ Pharmacy □ Other: Population description (e.g., year in program, notable demographic characteristics): Total number of participants: Data analytic procedures (e.g., descriptive analysis, comparison, LCA, MLM): INTERVENTION/CURRICULUM INFUSION 252 Death-Related Concepts – what did the intervention target? (e.g., ACP conversations, knowledge about specific concepts, hospice, communication) What was the type of course (if reported)? □ Required □ Elective □ Extra training □ Other: Intervention Components: List and describe each intervention component. Be sure to include information on quantity, dosage, duration, setting (online, in-person, hybrid), and descriptions of activities. Did the study cover cultural preferences, humility, or consider culture in any way? If yes, add details: Death Literacy Domains □ Practical (i.e., how to talk to someone about dying, death, and grief; includes some of the physical tasks associated with EOL care) □ Experiential (i.e., wisdom and skills obtained from direct EOL experiences or death education) □ Factual (e.g., knowledge about the death system, how to plan for dying well, options for caregiving, and death) □ Community (i.e., knowledge of EOL services and supports that exist within a community and how to access these services Key Findings/Results: 253 Appendix D: PRISMA-ScR Checklist for Reporting SECTION ITEM PRISMA-ScR CHECKLIST ITEM PAGE #(S) TITLE Title 1 Identify the report as a scoping review. 57 ABSTRACT Structured summary 2 Provide a structured summary that includes (as applicable): background, objectives, eligibility criteria, sources of evidence, charting methods, results, and conclusions that relate to the review questions and objectives. N/A INTRODUCTION Rationale 3 Describe the rationale for the review in the context of what is already known. Explain why the review questions/objectives lend themselves to a scoping review approach. 58-66 Objectives 4 Provide an explicit statement of the questions and objectives being addressed with reference to their key elements (e.g., population or participants, concepts, and context) or other relevant key elements used to conceptualize the review questions and/or objectives. 66 METHODS Protocol and registration 5 Indicate whether a review protocol exists; state if and where it can be accessed (e.g., a Web address); and if available, provide registration information, including the registration number. N/A Eligibility criteria 6 Specify characteristics of the sources of evidence used as eligibility criteria (e.g., years considered, language, and publication status), and provide a rationale. 67-68 Information sources 7 Describe all information sources in the search (e.g., databases with dates of coverage and contact with authors to identify additional sources), as well as the date the most recent search was executed. 68 Search 8 Present the full electronic search strategy for at least 1 database, including any limits used, such that it could be repeated. 68 Selection of sources of evidence 9 State the process for selecting sources of evidence (i.e., screening and eligibility) included in the scoping review. 68-69 Data charting process 10 Describe the methods of charting data from the included sources of evidence (e.g., calibrated forms or forms that have been tested by the team before their use, and whether data charting was done independently or in duplicate) and any processes for obtaining and confirming data from investigators. 69-70 Data items 11 List and define all variables for which data were sought and any assumptions and simplifications made. 69-70 Critical appraisal of individual 12 If done, provide a rationale for conducting a critical appraisal of included sources of evidence; describe the 70 254 sources of evidence methods used and how this information was used in any data synthesis (if appropriate). Synthesis of results 13 Describe the methods of handling and summarizing the data that were charted. 70 RESULTS Selection of sources of evidence 14 Give numbers of sources of evidence screened, assessed for eligibility, and included in the review, with reasons for exclusions at each stage, ideally using a flow diagram. 71, 240 Characteristics of sources of evidence 15 For each source of evidence, present characteristics for which data were charted and provide the citations. 71-75 Critical appraisal within sources of evidence 16 If done, present data on critical appraisal of included sources of evidence (see item 12). 76-78 Results of individual sources of evidence 17 For each included source of evidence, present the relevant data that were charted that relate to the review questions and objectives. 71-78 Synthesis of results 18 Summarize and/or present the charting results as they relate to the review questions and objectives. 71-78 DISCUSSION Summary of evidence 19 Summarize the main results (including an overview of concepts, themes, and types of evidence available), link to the review questions and objectives, and consider the relevance to key groups. 78-83 Limitations 20 Discuss the limitations of the scoping review process. 83-84 Conclusions 21 Provide a general interpretation of the results with respect to the review questions and objectives, as well as potential implications and/or next steps. 84 FUNDING Funding 22 Describe sources of funding for the included sources of evidence, as well as sources of funding for the scoping review. Describe the role of the funders of the scoping review. N/A 255 Appendix E: Coding Breakdown for Indicators, Covariates, and Outcomes Coding for Indicators, Covariates, and Outcome Variables Variable NHATS Question Response Options Recoded Indicators Symptom management Pain During the last month of life, were there times when {SP} experienced pain? and Did {SP} get any help in dealing with their pain? 1 = Yes 2 = No 1 = Experienced pain, did not get help 2 = Experienced pain, got help 3= No pain Anxiety During the last month of life, were there times when {SP} experienced anxiety or feelings of sadness? and Did {SP} get any help in dealing with their feelings of anxiety or sadness? 1 = Yes 2 = No 1 = Experienced anxiety, did not get help 2 = Experienced anxiety, got help 3 = No anxiety Goal concordant care Hospice use During the last month of {SP’s} life, did they receive hospice care? 1 = Yes 2 = No 1 = No 2 = Yes No decisions about care without input During the last month of {SP’s} life, was there ever a decision made about their care or treatment without enough input from them or their family? 1 = Yes 2 = No 1 = Yes 2 = No No unwanted care During the last month of {SP}’s life, was there any decision made about care or treatment that they would not have wanted? 1 = Yes 2 = No 1 = Yes 2 = No Healthcare Provider Involvement Kept informed During the last month of {SP}’s life, how often were you or other family members kept informed about their condition? 1 = Always 2 = Usually 3 = Sometimes 4 = Never 1 = Sometimes/Never 2 = Usually 3 = Always More than one doctor During the last month of {SP}’s life, was there more than one doctor involved in their care? 1 = Yes 2 = No 1 = No 2 = Yes 256 Clear doctor in charge During the last month of {SP}’s life, was it clear to you which doctor was in charge of their care? 1 = Yes 2 = No 1 = No 2 = Yes Religious beliefs During the last month of {SP}’s life, did any doctors, nurses or other health professionals talk with {SP} about their religious beliefs? 1 = Yes 2 = No 1 = No 2 = Yes Treated with respect During the last month of {SP}’s life, how often were they treated with respect by those who were taking care of them? 1 = Always 2 = Usually 3 = Sometimes 4 = Never 1 = Sometimes/Never 2 = Usually 3 = Always Covariates Living alone At the time of {SP}’s death, were they living alone? 1 = Yes 2 = No 1 = Yes 2 = No Geographic location Census Division 1 = New England 2 = Middle Atlantic 3 = East North Central 4 = West North Central 5 = South Atlantic 6 = East South Central 7 = West South Central 8 = Mountain 9 = Pacific 1 = Northeast (1,2) 2 = Midwest (3,4) 3 = South (5,6,7) 4 = West (8,9) Race What is the {SP}’s race? 1 = White, non-Hispanic 2 = Black, non-Hispanic 3 = Other (Am Indian, Asian, Native Hawaiian, Pacific Islander, Other), non-Hispanic 4 = Hispanic 1 = White 2 = Black 3 = Other, Hispanic, More than one 257 5 = More than one Distal Outcome Place of death Where did {SP}’s death take place? 1 = At SP’s or someone else’s home 2 = In a hospital 3 = In a nursing home 4 = In a hospice residence 5 = In transit 1 = At home 2 = Nursing home/Hospice residence 3 = Hospital/Transit Note. SP = study person. 258 Appendix F: Significance Testing for “Don’t Know” Responses by Covariate Chi-Square Significance Testing for Differences in “Don’t know” or Missing Responses Round of Data Lived Alone Race Geographic Location χ2 (p-value) χ2 (p-value) χ2 (p-value) χ2 (p-value) Comfort Pain 4.46 (.216) 1.15 (.285) 1.47 (.101) 1.19 (.755) Anxiety 4.46 (.216) 1.14 (.290) 1.42 (.119) 1.11 (.751) Control No decisions made without input .817 (.845) 1.25 (.533) 1.23 (.539) 4.972 (.174) Did not received unwanted care 2.38 (.498) .445 (.505) .111 (.946) 2.23 (.525) Informed about condition .410 (.938) 1.09 (.297) 1.88 (.390) 5.73 (.126) Connectedness Hospice use .817 (.845) .451 (.231) 1.25 (.533) 5.23 (.155) More than one doctor 2.77 (.429) .739 (.390) 1.70 (.427) 3.59 (.309) Clear doctor in charge 2.56 (.484) .272 (.602) .215 (.898) 5.25 (.155) Religiosity discussed 1.42 (.700) 2.03 (.155) 5.56 (.062) 3.11 (.375) Treated with respect 2.38 (.497) 2.65 (.103) 3.31 (.191) 7.61 (.061) 259 Appendix G: Graphs for LCA Phase 3 Figure 3.1. Probability of place of death by latent class for those who did not live alone at death. Figure 3.2. Probability of place of death by latent class for those who lived alone at death. 0%10%20%30%40%50%60%70%Home Third Space HospitalProbabilityPlace of DeathDiscordant Controlled Harmonious Comforted0%10%20%30%40%50%60%Home Third Space HospitalProbabilityPlace of DeathDiscordant Controlled Harmonious Comforted 260 Figure 3.3. Probability of place of death by latent class for those who identify as White, non-Hispanic. Figure 3.4. Probability of place of death by latent class for those who identify as Black, non-Hispanic. 0%10%20%30%40%50%60%70%Home Third Space HospitalProbabilityPlace of DeathDiscordant Controlled Harmonious Comforted0%10%20%30%40%50%60%70%80%Home Third Space HospitalProbabilityPlace of DeathDiscordant Controlled Harmonious Comforted 261 Figure 3.5. Probability of place of death by latent class for those who lived in the Northeast. Figure 3.6. Probability of place of death by latent class for those who lived in the Midwest. 0%10%20%30%40%50%60%70%Home Third Space HospitalProbabilityPlace of DeathDiscordant Controlled Harmonious Comforted0%10%20%30%40%50%60%Home Third Space HospitalProbabilityPlace of DeathDiscordant Controlled Harmonious Comforted 262 Figure 3.7. Probability of place of death by latent class for those who lived in the South. Figure 3.8. Probability of place of death by latent class for those who lived in the West. 0%10%20%30%40%50%60%70%Home Third Space HospitalProbabilityPlace of DeathDiscordant Controlled Harmonious Comforted0%10%20%30%40%50%60%70%80%Home Third Space HospitalProbabilityPlace of DeathDiscordant Controlled Harmonious Comforted |
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