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Original TitleThe Effect of Palliative Care Team-led Family Meetings on End-of-Life Decision-Making Among Medical Surrogates of Hospitalized, Incapacitated, Senior, African Americans with Life Limiting Illnesses
Sanitized Titletheeffectofpalliativecareteamledfamilymeetingsonendoflifedecisionmakingamongmedicalsurrogatesofhospitalizedincapacitatedseniorafricanamericanswithlifelimitingillnesses
Clean TitleThe Effect Of Palliative Care Team-Led Family Meetings On End-Of-Life Decision-Making Among Medical Surrogates Of Hospitalized, Incapacitated, Senior, African Americans With Life Limiting Illnesses
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Original AbstractCulture and ethnicity are known to influence end-of-life decision-making. The purpose of this study was to conduct a retrospective chart review to explore whether Palliative Care Team (PCT)-led family meetings influence end-of-life decisions made by medical surrogates of hospitalized, incapacitated, senior, African Americans suffering with life limiting illnesses. Using Imogene King’s nursing theory of Goal Attainment as the overarching framework in achieving effective caring, the electronic medical records (EMRs) of 96 African Americans, whose medical surrogates participated in a PCT-led family meeting on their behalf to discuss end-of-life care options from April 1, 2013 to March 31, 2014 were reviewed. Data extracted from EMRs identified end-of-life decisions made by the surrogates. The data were also examined to compare decisions made by surrogates with what the patients documented in their Living Wills (LW). Finally, the data were used to examine relationships between age, gender, and kinship, and end-of-life decisions made by surrogates on the patient’s behalf. Demographics and variables were examined using descriptive statistics. ANOVA and Pearson Chi-Square were utilized to evaluate relational significance. A significant relationship was noted between decreased length of hospital stay and those transitioned to comfort care. Additionally, a representative number (40%) of these patients were transitioned from restorative to comfort care following their surrogate’s participation in a PCT-led meeting. While few (13.5%) had a LW, of those LWs available, the medical surrogates generally upheld the patients’ wishes documented within their LW. Age, gender, and kinship played an insignificant role in the surrogate’s care pathway decision. Meetings were conducted by PCT physicians or nurse practitioners. Both obtained similar meeting outcomes, thus implying that family meeting facilitation skills are similar between these disciplines. This work suggests that the PCT-led family meeting can influence medical surrogate decision-making. Future efforts must focus on fostering the right of autonomy among African Americans, and providing education concerning the importance of the LW. Making PCTs available to those involved in end-of-life decision-making can further efforts to eliminate health care disparities which African Americans continue to face.Dr.N.P., Nursing Practice -- Drexel University, 201
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The Effect of Palliative Care Team-led Family Meetings
on End-of-Life Decision-Making
Among Medical Surrogates of Hospitalized, Incapacitated, Senior, African
Americans with Life Limiting Illnesses

A Thesis
Submitted to the Faculty
Of
Drexel University
By
Maria Doll Shaw
In partial fulfillment of the
requirements for the degree
of
Doctor of Nursing Practice
May, 2015
i




















© Copyright 2015
Maria Doll Shaw DrNP, RN-BC. All Rights Reserved


ii



Dedications
To my family, my wonderful husband Ed, who four years ago lost his playmate.
Well Sir . . . I’m back! Thank you for your unwavering support and patience as I
journeyed through my doctoral studies. I love you and appreciate how you always
encourage me to be the best I can be.
To my girls, you all four knew I could do this, even when I had my doubts. Do
you know how many times you told me “if this was easy, everyone would be doing it”?
During these four years, although you thought I was just studying, I have watched Beth
and Christie fall in love and marry. Christie earn her MBA, Beth move to a faraway land
of meat, cheese and wine. Caroline graduate from college, graduate school and achieve
her CPA. Juli graduated from high school and is now an aspiring nurse-in-training. You
all make me so proud every day. I hope and pray that I make you proud as well.
To my Mom and Dad, your support of my dreams has always inspired me to reach
just that much higher. I lost my beloved father while on this journey, but I felt him sitting
on my shoulder every time I sat at the computer, whispering in my ear and encouraging
me to push on to completion. He was reminding me that if I didn’t finish this work, I
would have to answer to Mom! From Dad I learned that I am the only obstacle to
accomplishing my dreams.
To my sister Anneliese, and my brother Karl, (the queen and king of
accomplishing dreams), thank you for believing that I could do this. Disappointing my
little sister and brother was not to be an option!
iii


To all my family and friends, I am eternally grateful for each of you and your love
and support. . . . God bless us every one.

















iv


Acknowledgements
African Americans have played a very important role in the growth and
development of our Nation and the world. They have made valuable and important
contributions to American society and also created their own unique culture, rich in
tradition, for which we should all be proud and grateful. My sincerest appreciation and
respect goes to the African American community from which I was able to glean my
research information. My deepest gratitude also, to Abington Memorial Hospital for
permitting me access to the remarkable patient cases I needed in order to complete my
research work with this patient population.
To my mentor Dr. Linda Wilson, for her constant encouragement and hours of
reading and guiding of my work, I am eternally indebted. Likewise, my sincerest
appreciation to Dr. Roberta Waite, who graciously joined my committee well after this
work had been laid out, and for providing the much needed insight and perspective on
African American living. To Dr. Susan Kristiniak, my dear friend and confidant, thank
you for introducing me to palliative care, a philosophy of caring which provides comfort
and support for those whose medical conditions leave them so vulnerable. I am in awe of
her commitment and expertise in this work with those who are nearing life’s end.
Finally, a great big thank you to Dr. Mary Naglak, my statistical consultant, this work
could not have been completed without her expertise and the patience she had with one
who is so statistically challenged.
v


Drexel University College of Nursing and Health Professions has prepared me
well to enter the next phase of my career. These past four years have been an
unbelievable journey. For me . . . it is just the beginning.
















vi


Table of Contents
LIST OF TABLES ............................................................................................. xii
LIST OF FIGURES ........................................................................................... xiii
ABSTRACT ....................................................................................................... xiv
1. INTRODUCTION ....................................................................................... 1
1.1 Care at End – of - Life .................................................................... 2
1.2 Palliative Care ............................................................................... 3
1.3 Benefits of Palliative Care ............................................................. 4
1.4 Fiscal Impact .................................................................................. 5
1.5 Medical Decision-Making .............................................................. 6
1.5.1 Benevolent deception ..................................................... 6
1.5.2 Autonomous decision-making ......................................... 7
1.5.3 Informed consent ............................................................. 7
1.6 Surrogate Decision-Making .......................................................... 10
1.6.1 AD and surrogate medical decision-making ................... 13
1.7 Palliative Care Team-Led Family Meeting .................................. 17
1.7.1 African Americans & PCT-led family meeting .............. 18
1.8 Statement of Problem .................................................................... 20
1.9 Statement of Purpose .................................................................... 22
vii


1.10 Significance of the Study .............................................................. 22
1.11 Specific Aims ................................................................................ 23
1.12 Research Hypothesis ..................................................................... 24
1.13 Foundations of the Study .............................................................. 25
1.14 Summary ............................................................................... 25
2. REVIEW OF LITERATURE ...................................................................... 28
2.1 Process for Literature Review ........................................................ 28
2.2 Palliative Care Teams ..................................................................... 29
2.3 African American End-of-life Decision-Making ........................... 31
2.3.1 Mistrust of the health care system ................................... 32
2.3.2 Health literacy ................................................................. 34
2.3.3 Self-determination ........................................................... 36
2.3.4 Concordant health care providers .................................... 38
2.3.5 Self-care ........................................................................... 39
2.3.6 Where to die ..................................................................... 41
2.3.7 Communication ................................................................ 42
2.4 Satisfaction with PCT Services ....................................................... 44
2.4.1 Measuring satisfaction ..................................................... 45
2.5 Theoretical Framework .................................................................. 45
viii


2.5.1 Theory of Goal Attainment ............................................. 46
2.5.2 Theory application ........................................................... 47
2.6 Summary ......................................................................................... 47
3. RESEARCH DESIGN AND METHODOLOGY ....................................... 52
3.1 Research Design ............................................................................. 52
3.1.1 Study sample characteristics ............................................ 53
3.2 Sample Selection and Setting.......................................................... 54
3.2.1 Sample.............................................................................. 54
3.2.2 Setting .............................................................................. 54
3.2.3 Sampling strategy............................................................. 55
3.2.4 Inclusion criteria .............................................................. 55
3.2.5 Exclusion criteria ............................................................. 56
3.3 Human Subject Research Consideration .......................................... 57
3.3.1 Institutional approval ....................................................... 57
3.3.2 Informed consent ............................................................. 57
3.3.3 Risks and benefits ............................................................ 57
3.3.4 Privacy and confidentiality .............................................. 58
3.3.5 Data protection ................................................................. 59
3.3.6 Researcher integrity ......................................................... 59
ix


3.4 Data Collection and Management .................................................. 59
3.4.1 Collecting data ................................................................. 59
3.4.2 Sampling prerequisites ..................................................... 60
3.4.3 Data collection process .................................................... 61
3.4.4 Managing the Data ........................................................... 61
3.5 Data Analysis ................................................................................. 62
3.6 Specific Aims .................................................................................. 63
3.6.1 Specific Aim #1 ............................................................... 63
3.6.2 Specific Aim #2 ............................................................... 64
3.6.3 Specific Aim #3 ............................................................... 64
3.7 Summary ........................................................................................ 65
4. RESULTS AND FINDINGS ....................................................................... 68
4.1 Demographics ................................................................................. 69
4.2 Key Variables.................................................................................. 72
4.3 Incidental Variables ........................................................................ 77
4.4 Statistical Significance .................................................................... 77
5. DISCUSSION ............................................................................................... 79
5.1 Specific Aims .................................................................................. 79

x


5.2 Pre/Post PCT-led Family Meeting Decision for Pathway of Care
Decision .......................................................................................... 81
5.3 Advance Directives and Surrogate Medical Decision-Making ...... 83
5.4 Demographic Influences and the Decision for Pathway of Care .... 85
5.4.1 Patient Age ....................................................................... 85
5.4.2 Gender .............................................................................. 86
5.4.3 Kinship ............................................................................. 86
5.5 Length of Stay Based on Decision for Pathway of Care ................ 89
5.6 Family Meeting Facilitator Credentials and Theoretical
Framework ...................................................................................... 91

5.7 Study Limitations ............................................................................ 92
5.8 Implications for Clinical Practice and Research ............................. 95
6. CONCLUSION ............................................................................................. 98
LIST OF REFERENCES ................................................................................... 102
APPENDIX A: American Hospital Association Patient Bill of Rights ............ 137
APPENDIX B: Pennsylvania Orders for Life-Sustaining Treatment ............... 141
APPENDIX C: Living Will Document............................................................. 143
APPENDIX D: Durable Power of Attorney for Health Care Document.......... 148
APPENDIX E: Five Wishes ............................................................................. 154
xi


APPENDIX F: FAMCARE-2 Family Satisfaction Survey .............................. 155
APPENDIX G: Drexel University Internal Review Board............................... 157
APPENDIX H: Abington Memorial Hospital Internal Review Board ............. 158
APPENDIX I: The Family Goal Setting Meeting Procedure ........................... 162
APPENDIX J: Data Collection Sheet ............................................................... 164
Vita .................................................................................................................... 168 .















xii



List of Tables
1: Data Processing Sheet ................................................................................................ 165
2: Data Coding Key ....................................................................................................... 166
3: Data Processing and Analysis ................................................................................... 167
4: Demographic Characteristics .................................................................................... 71
5: Key Variables and Post Goals of Care Decision ...................................................... 76
6: Incidental Variables and Post Goals of Care Decision ............................................. 78











xiii



List of Figures

1. Determination for Medical Decision Making .......................................................... 124
2. Procedure for End-of-Life Surrogate Health Care Decision Making ...................... 125
3. King’s Model for Nurse-Patient Transaction ........................................................... 126
4. The Palliative Care Team-led Family Meeting Process Map .................................. 127

5. Patient’s Gender/Surrogate’s Post Family Meeting Pathway of Care Decision ...... 128

6. Kinship of Medical Surrogate to the Patient ............................................................ 129
7. Mean Length of Stay (days)/Medical Surrogate’s Post Family Meeting
Pathway of Care Decision ........................................................................................ 130
8. Medical Surrogate’s Post Family Meeting Pathway of Care Decision.................... 131
9. Existence of an Advance Care Plan ......................................................................... 132
10. Patient’s Decision on Living Will/Medical Surrogate’s Post Family Meeting
Pathway of Care Decision ........................................................................................ 133

11. Patient Age/Medical Surrogate’s Post Family Meeting Pathway of Care
Decision .................................................................................................................. 134

12. Medical Surrogate’s Gender/Medical Surrogate’s Post Family Meeting
Pathway of Care Decision ....................................................................................... 135

13. Medical Surrogate’s Kinship to the Patient/ Medical Surrogate’s Post Family
Meeting Pathway of Care Decision ........................................................................ 136
xiv



Abstract
The Effect of Palliative Care Team-led Family Meetings on End-of-Life Decision-
Making Among Medical Surrogates of Hospitalized, Incapacitated, Senior, African
Americans with Life Limiting Illnesses

Maria Doll Shaw, DrNP, RN-BC
Linda Wilson, PhD, CPAN, CAPA, BC, CNE, CHSE, CHSE-A, ANEF, FAAN




Culture and ethnicity are known to influence end-of-life decision-making. The purpose
of this study was to conduct a retrospective chart review to explore whether Palliative
Care Team (PCT)-led family meetings influence end-of-life decisions made by medical
surrogates of hospitalized, incapacitated, senior, African Americans suffering with life
limiting illnesses. Using Imogene King’s nursing theory of Goal Attainment as the
overarching framework in achieving effective caring, the electronic medical records
(EMRs) of 96 African Americans, whose medical surrogates participated in a PCT-led
family meeting on their behalf to discuss end-of-life care options from April 1, 2013 to
March 31, 2014 were reviewed. Data extracted from EMRs identified end-of-life
decisions made by the surrogates. The data were also examined to compare decisions
made by surrogates with what the patients documented in their Living Wills (LW).
Finally, the data were used to examine relationships between age, gender, and kinship,
and end-of-life decisions made by surrogates on the patient’s behalf. Demographics and
variables were examined using descriptive statistics. ANOVA and Pearson Chi-Square
xv


were utilized to evaluate relational significance. A significant relationship was noted
between decreased length of hospital stay and those transitioned to comfort care.
Additionally, a representative number (40%) of these patients were transitioned from
restorative to comfort care following their surrogate’s participation in a PCT-led meeting.
While few (13.5%) had a LW, of those LWs available, the medical surrogates generally
upheld the patients’ wishes documented within their LW. Age, gender, and kinship
played an insignificant role in the surrogate’s care pathway decision. Meetings were
conducted by PCT physicians or nurse practitioners. Both obtained similar meeting
outcomes, thus implying that family meeting facilitation skills are similar between these
disciplines. This work suggests that the PCT-led family meeting can influence medical
surrogate decision-making. Future efforts must focus on fostering the right of autonomy
among African Americans, and providing education concerning the importance of the
LW. Making PCTs available to those involved in end-of-life decision-making can further
efforts to eliminate health care disparities which African Americans continue to face.


Keywords: Palliative Care, family meeting, African Americans, end-of-life decisions,
medical surrogates, living will
i


1


CHAPTER 1: INTRODUCTION
The number of adults living with advanced and complex chronic, incurable
illnesses is growing each year. Over 70 million Americans of all races can expect to
reach age 65 by 2030 (Institute of Medicine (IOM), 2008), and while 8.3% of this older
United States (US) population were African Americans in 2008, African Americans are
expected to represent 11% of this older population by 2050 (US Census Bureau, 2014;
US Department of Health and Human Services Administration on Aging, 2010).
Dissatisfaction with the quality and costs of health care services continue to be reported
(Morrison et al., 2008). In a 2013 poll, one third of African Americans admit being
dissatisfied with the health care system available to them (Harvard Opinion Research
Program, Robert Wood Johnson Foundation, and National Public Radio, 2013). The US
federal government spent nearly $2.6 trillion in 2010 on health care costs. This is 17.9%
of our Nation’s economic activity, with total expenditures continuing to grow faster than
the national income (Henry J. Kaiser Family Foundation, 2012). The Centers for
Medicare and Medicaid Services (CMS) report that more than 25% of Medicare spending
is used to treat 5% of their beneficiaries who die each year (Adamopoulos, 2013;
National Institute for Health Care Management Foundation, 2012). One central approach
to addressing such rampant spending is the development of more efficient health care
delivery models (Morrison et al., 2008). Palliative Care is one such health care delivery
model which can address the decision-making for goals of care at end-of-life when
treatment options for those with chronic, life limiting medical conditions can prove to be
burdensome, uncomfortable, dissatisfying, expensive and even futile. The phenomenon
2


of interest for this study was the decision-making among medical surrogates who
determine goals of care for the patients of interest.
Care at End-of-Life
Palliative care expands the traditional disease-focused approach to medical care
by providing an added layer of support which emphasizes the patient’s wishes and goals
for quality of life, optimizing functional status, treating pain and other distressing
symptoms, and assisting with end-of-life health care decision-making. Palliative care can
be delivered simultaneously with restorative treatment options, or it can be the main
focus of the care provided (Quill et al., 2010). The mission of palliative care is to
improve the quality of care, and the lives of persons with life limiting illnesses (Loscalzo,
2008; Quill et al., 2010) and their families. This academic medical specialty evolving in
today’s health care system was borne out of the hospice movement of 65 years ago
(Loscalzo, 2008).
It was in the 1950s, that Dr. Cicely Saunders was the first to highlight the
importance of caring effectively for the dying patient (Loscalzo, 2008). As founder of
the hospice movement, she emphasized that effective hospice care could only be
accomplished through the efforts of an interdisciplinary team equipped to treat one’s
physical, psychological, social, and spiritual suffering; a concept which still holds true in
palliative medicine today (Loscalzo, 2008).
Saunders’ early efforts in care for the dying were advanced by the work of
psychiatrist Elisabeth Kubler-Ross in the 1960s when Kubler-Ross published her
groundbreaking book, On Death and Dying (Loscalzo, 2008). In her book, Kubler-Ross
described a continuum of five stages of grief: denial, anger, bargaining, depression, and
3


acceptance and posited that one who faces personal loss may experience these reactions
as they come to terms with extreme impending fate (Kubler-Ross, 1969). This conceptual
framework revolutionized the way dying patients are cared for from a humanistic
perspective.
Palliative Care
In 1974, Canadian surgeon Dr. Balfour Mount coined the title palliative care in
response to the negative impact the word hospice had on his patients (Loscalzo, 2008).
Dr. Mount observed that patients living with life limiting conditions, while not
imminently dying, were often suffering physical, psychological, social, and spiritual
distress; as were their families (Loscalzo, 2008). He believed that their quality of life
could be maximized if a holistic approach was applied to their symptoms, addressing all
components of human suffering (Loscalzo, 2008).
Despite the early efforts of Saunders, Kubler-Ross, and Mount, over 20 years
later, the IOM report Approaching Death Improving Care at the End-of-Life, cited
ongoing deficiencies in end-of-life care in the US and mandated that palliative care
become a routine component of mainstream medicine and nursing (Field & Cassel, 1997;
IOM, 1998). In response to this mandate, the first edition of the Clinical Practice
Guidelines for Quality Palliative Care was released in 2004, supported by a coalition of
four American end-of-life professional and scientific associations: Hospice and Palliative
Nurses Association (HPNA), American Association of Hospice and Palliative Medicine
(AAHPM), the National Hospice and Palliative Care Organization (NHPCO), and the
Center to Advance Palliative Care (CAPC) in the US (Lynch, Dahlin, Hultman, &
Coakley, 2011).
4


These guidelines listed and described eight domains of holistic care: 1) structure
and process of care, 2) physical aspects of care, 3) psychological aspects of care, 4) social
aspects of care, 5) spiritual, religious, and existential aspects of care, 6) cultural aspects
of care, 7) care of the patient at the end-of-life, and 8) ethical and legal aspects of care
(American Academy of Hospice and Palliative Medicine, 2013). The guidelines not only
focused on the needs of the actively dying, but expanded the focus of palliative care to
include those continuing to live with chronic, life limiting illnesses (Lynch et al., 2011).
The organizations created these guidelines to define palliative care as both a philosophy
of care, as well as an organized system of care delivery, stating:
Palliative care means patient and family-centered care that optimizes quality of
life by anticipating, preventing, and treating the suffering of those with chronic,
life limiting conditions, and their loved ones. Palliative care throughout the
continuum of illness involves addressing physical, intellectual, emotional, social,
and spiritual needs as well as facilitating patient autonomy, access to information
and choice (Dahlin, 2013, p. 9).
By 2006, palliative care fellowship programs began to recruit trainees and
focused on teaching clinicians that it was appropriate for patients and families to accept
life on their own terms, and never to abandon them; to always provide comfort and
relieve their suffering, even when modern medicine has nothing left to offer (IOM, 2014;
Loscalzo, 2008).
Benefits of Palliative Care
The priorities of the PCT continue to be clear. Priorities include delivering honest
and direct communication of the patient’s condition and care options to the patient and
5


family and to their team of health care providers (Chai & Meier, 2011; Fosler, Staffileno,
Fogg, & O’Mahony, 2015; Quill et al., 2010). The focus of palliative care is to
effectively manage pain and symptoms of disease, coordinate care delivery and align it
with the goals of the patient and family. Providing effective palliative care is good health
care, and can increase satisfaction for patients, families, and caregivers; enhancing
quality of life for the stakeholders, regardless of their clinical outcomes. Additionally,
palliative care services can conserve resources and lower costs of care for patients and
families, organizations, and the nation as a whole, contributing to a more sustainable
health care system (Chai & Meier, 2011; IOM, 2014).
Fiscal Impact
Each year, the number of baby-boomers who become Medicare-eligible is
growing. The US Census Bureau reports that by 2029, approximately 71.4 million
people will be Medicare-eligible, thus, those age 65 and older can expect to make up 20%
of the US population, a 6% increase from 2012 US Census Bureau statistics (Pollard &
Scommegna, 2014; US Census Bureau, 2014). Many of these elders will be living with
chronic conditions, driving increased use and spending of precious health care resources
which may not necessarily contribute to a better quality of life (Chai & Meier, 2011;
Milbrandt et al., 2008). Morrison and colleagues (2008) responded to this concern by
alleging that the palliative care model of care delivery not only enhances the quality of
life for such patients, but can also affect a financial benefit to Medicare and Medicaid, as
well as, to conserve resources for hospitals and health care organizations. A review by
Morrison et al. (2011) of palliative care programs at four New York hospitals from 2004 -
2007 noted that involvement of palliative care services reduced direct hospital costs by
6


$6900 per admission, and included savings of $4,098 per admission for live discharges
and almost $7,563 per admission for patients who died in the hospital. Taken together
this suggests that administrators should consider supporting PCT efforts as contributing
to the fiscal health of their organizations (Morrison et al., 2011).
Medical Decision-Making
PCTs are often called upon to assist patients and families in making health care
decisions based on clear and honest information which they provide regarding topics such
as health care status, prognosis, and care treatment options. Autonomy is the gold
standard methodology used in patient communication (Roeland, Cain, Onderdonk, Kerr,
Mitchell, & Thornberry, 2014). Respect for this North American medical decision-
making model of the 21
st
century was not endorsed or respected prior to the American
Revolution (Wall, 2011a). In order to appreciate the work of PCTs, it is important to
understand the history behind the way medical decision-making has evolved in the US.
benevolent deception. “Corpus Hippocraticum”, the Hippocratic medical
philosophy of benevolent deception, endorsed that the withholding of any medical
information by the physician or health care provider, felt to be detrimental to the patient,
was an appropriate way to protect and safeguard the sick (Wall, 2011a). Physicians were
taught that they must give hope to the sick and that deceiving them to do so was not
lying, but was part of therapy, and was in the patient’s best medical interest (Wall,
2011a). Benevolent deception was supported as proper medical practice for 2400 years
until the end of the 19
th
century when historically, attitudes and philosophies regarding
autonomy began to be valued and celebrated by American society in all aspects of their
lives, including their medical care (AMA, 2001; Wall, 2011a).
7


autonomous decision-making. The American Revolution provided the platform
for a new independent, autonomous, American ideology. This platform emphasized
liberty, self-sufficiency and self-rule; and so any group (including physicians) who
claimed supremacy over the common interest of individuals was an affront to these new
social principles, and to those who embraced them (Wall, 2011a). The autonomy model
of health care decision-making sprouted from this independent thinking, leaving
physicians frustrated, dismayed and waning supremacy (Wall, 2011a).
The 19
th
century was a time of turmoil for the medical community. Physicians
struggled with the notion that they were now expected to include the patients in the plans
for their care that they, in their own paternalistic way, had always dictated (Wall, 2011a).
The American Medical Association (AMA) was formed during this century, and in 1847
published its original Codes of Ethics, very much favoring benevolent deception ideals
(AMA, 1847). Interestingly, government amendments, written in support of autonomous
decision-making, created by this emerging bioethics movement in the US in the 20
th

century, emphasizing the right to autonomy for all citizens, was not endorsed by the
AMA until 1980 (Wall, 2011a). Arguments between supporters of autonomous decision-
making and supporters of clinician paternalism continue, as some practitioners believe
that to uphold autonomy is to allow patients and families to dictate care even when
treatment options are believed to be medically futile, non-beneficial, and burdensome to
the patient and health care system (Graber & Tansey, 2005; Roeland et al., 2014).
informed consent. This bioethics movement of the 20
th
century was fueled by
professional clinical practice, scientific research, and the ethical examination of research
practices during the post-World War II Nuremberg trials and fostered the original
8


informed consent doctrine recognized by contemporary modern medicine (Wall, 2011b).
The Nuremberg Code in 1949 was first to advise that “voluntary consent of human
subjects in medical research and investigation is absolutely essential; the subject should
be able to exercise free power of choice” (Nuremberg Military Tribunals, Volume II,
1949, p. 181). In 1964, the Declaration of Helsinki further espoused such doctrine,
requiring disclosure of medical information to patients by health care providers so that
the treatment recipients could make their own informed medical choices (Wall, 2011b).
This document expected the patient to not only give consent for treatment, but also
supported the rights of patients to refuse care options regardless of risk of death, hence
rooting the concept of self-determination (Wall, 2011a), a right that is valued, respected
and legally upheld in the US in the 21st century.
Unfortunately, American health care providers and researchers were not always
stewards of this informed consent doctrine during the mid-1900s. Occupants of the
Nation’s institutions, orphanages, prisons, and asylums, as well as racial minorities, who
lacked mental capacity or were ill-informed to provide such consent, were easy targets,
frequently used for experimentation without informed consent (Wall, 2011b). Society
was slow to question such blatant unethical practices as the knowledge gleaned from
these studies, which exploited vulnerable human subjects, was valuable to the future of
mankind. Moreover, the general public felt that these vulnerable groups added little else
to society, and this was one way they could make a contribution (Wall, 2011b). Since
much of this human subject work was done by physicians, these targeted vulnerable
groups along with their advocates developed a growing mistrust of the medical
community (Kennedy, Mathis, & Woods, 2007; Randall, 1996; Roberts, 1998; Suite,
9


LaBrill, Primm, & Harrison-Ross, 2007; Wall, 2011b; White, 2000). One noted
historical account that continues to contribute to the mistrust which festered within some
African American communities toward the medical society as a result of un-consented
medical experimentation occurred during the Tuskegee Syphilis Study of 1932 – 1972
(Kennedy et al., 2007; Suite et al., 2007; Washington, Bickel-Swenson, & Stephens,
2008, Washington et al., 2009; White, 2000). It was during this study that physicians
withheld syphilis treatment to African Americans, to examine the effects of the
progression and outcomes of untreated syphilis even after treatment was developed and
available (Kennedy et al., 2007; Suite et al., 2007; Washington et al., 2008; Washington
et al., 2009; White, 2000). Every facet of beneficence, informed consent, and justice was
annihilated so that practitioners/scientists could observe how such untreated disease acts
in an undervalued population. The resulting mistrust among some African Americans
toward the medical community will be explored in further detail in Chapter 2.
By the 1970s, the ideals established by the bioethics movement had become
increasingly valued by American society. Many patients insisted on exercising their right
to autonomy related to health care decision-making (Wall, 2011b). In response to
society’s acceptance of these ideals, following the centuries of physician paternalism,
mistrust, and uncertainty the American Hospital Association (AHA) in 1973 felt it
necessary to produce and publish a Patient’s Bill of Rights (see Appendix A), which
focused on providing respect for hospitalized patients (Wall, 2011b). Also at this time,
the National Research Act was voted into law, and the National Commission for the
Protection of Human Subjects and Biomedical and Behavioral Research was established,
and the Belmont Report was published (Wall, 2011b). This report is the doctrine that still
10


serves as the guidepost for regulation of research, and the protection of human subjects in
the US today (Wall, 2011b). The Belmont Report acknowledges the rights of individual
decision-making and proclaims that all individuals should be respected as autonomous
agents, no matter their condition or individual challenges (National Institute of Health,
1979). However, the need to support decision-making when the individual is
incapacitated provides additional challenges, and requires yet another decision-making
model which is known as surrogate decision-making (Torke, Alexander, & Lantos,
2008).
Surrogate Decision-Making.
Patients who do not have capacity to make their own medical decisions due to
conditions and challenges include: juveniles, those with cognitive impairment, those who
are demented, those suffering with a serious or terminal illness, those who are sedated,
those in an unconscious state, and those in a coma (Cerminara, 2011). Torke and
colleagues (2011) studied medical surrogate decision making and do not resuscitate
orders. They noted that in an old, frail population of patients, resuscitation decisions
were made by medical surrogates more that 50% of the time, and that when it came to
end-of-life decisions for care; it was the norm rather than the exception that medical
surrogates are tasked to decide (Shalowitz, Garrett-Mayer, & Wendler, 2006; Silveira,
Kim, & Langa, 2010; Torke et al., 2011; Vig et al., 2007). All individuals have the right
to be cared for and respected under the current autonomy model of medical decision-
making, and this right is upheld by consulting various surrogate decision-making
mechanisms which give voice to patients who lack the ability to express their own wishes
(Cerminara, 2011) (see Figure 1). These mechanisms have established legitimacy by
11


state and federal institutions, the Law of Torts and from court cases which have provided
society with legal precedence (Cerminara, 2011).
The courts prefer not to hear such cases, but rather leave surrogate medical
decision-making to loved ones and families; those who best know what the patient would
want done (Cerminara, 2011). However, when it is believed that a patient is not being
properly represented, in the interest of upholding individual autonomy and respect for
self-determination, the courts are obliged to intervene on the patient’s behalf (Cerminara,
2011). History has supplied us with several such precedence-setting legal cases, where
end-of-life decisions were decided in the courts and where health care surrogate decision-
making is originally based (Cerminara, 2011). These high profile cases include as In re
Quinlan, 1976, Cruzan v Missouri Department of Health, 1990 and Bush v Schiavo, 2004
(Cerminara, 2011).
In re Quinlan is considered the seminal surrogate decision-making case in US
history as it focused on Karen Ann Quinlan, a young woman, in a vegetative state, unable
to make her own medical decisions (Cerminara, 2011). In the state of Texas, Quinlan’s
parents were her medical decision-makers by default, and after much deliberating through
the Texas state court system, were able to uphold Quinlan’s right to autonomy and self-
determination (Cerminara, 2011). Her parents were charged to render their best judgment
on Quinlan’s behalf, as if she had the capacity to do so herself (In re Quinlan, 1976).
Ultimately successful in supporting the withdrawal of her medical care, In re Quinlan
was the first to establish precedence for surrogate medical decision-making in the US
(Cerminara, 2011).
12


In Cruzan, the courts established that the federal constitution protected the right
of patients to refuse life-sustaining medical care, and established that surrogate
decision-makers could elect for this on behalf of the patient (Cruzan v Missouri
Department of Health, 1990). The Cruzan rulings provided congress the momentum to
draft and pass the Patient Self Determination Act of 1990 (PSDA) (Cerminara, 2011;
Sangermano, 1992). This act, which still prevails to this day, stands as an exemplar of
legal decision making at the end-of-life in the US and mandates that health care
organizations provide to those receiving medical care information regarding their rights
under state law to accept or to refuse treatment (Cerminara, 2011; Sangermano, 1992).
All health care organizations who accept federal reimbursement must comply with the
stipulations outlined in the PSDA (Omnibus Budget Reconciliation Act, 1990;
Sangermano, 1992).
In Bush v Schiavo, the judicial verdict supporting the decision to halt medically
supplied nutrition and hydration to Theresa Marie Schiavo, who existed in a vegetative
state, was challenged by the legislative and executive branches of government
(Cerminara, 2011). Ultimately, this verdict was upheld by the courts, who additionally
cautioned those in elected positions to acquiesce to the courts regarding such cases which
were in dispute (Bush v Schiavo, 2004), and refrain from using such cases for political
notoriety. This case as well as the others illustrates the need to endorse surrogate medical
decision-making in such situations as a way to protect patient autonomy, and highlights
the value of advance care planning afore a catastrophic incident.
13


advance directives and surrogate medical decision-making. There are several
ways that surrogates establish decision-making authority. The ideal way is when the
patient dictates her/his own medical decision-making in a written document, using an
advance directive (AD) (Cerminara, 2011). Examples include Physician Orders for Life-
Sustaining Treatment (POLST) (see Appendix B) which are specific physician orders
outlining what type of end-of-life treatment a patient does or does not want (Cerminara,
2011; Coolan, 2012). The LW document (see Appendix C) is another example of an
AD, and outlines the preferences for end-of-life medical treatment that one does or does
not desire when they are no longer able to communicate these wishes for themselves
(Silveira et al., 2010). Still another written AD option is for the patient to designate a
surrogate medical decision-maker to act as her/his health care agent and is known as a
Durable Power of Attorney for health care (DPOA) (see Appendix D) (Pope, 2012;
Silveira et al., 2010). This health care proxy, named by the patient, is to make medical
decisions on behalf of the patient, when she/he is not able to do so, and make the
decisions the patient would have wanted had she/he been able to speak for her/himself
(PA Act 169, 2006; Pope, 2012; Silveira et al., 2010). A fourth example of an AD is the
Five Wishes (see Appendix E), published and supported by the non-profit organization
Aging with Dignity, a nationally recognized AD form which encompasses both a LW and
a DPOA for health care decisions (Towey, 2011). Unlike other AD forms, this document
includes directives for comfort care preferences as well as final thoughts and wishes for
loved ones (Towey, 2011). Five Wishes is available in 26 languages, and in addition to
the medical requisites, it is the first AD to address personal, emotional, and spiritual
wishes and concerns (Towey, 2011).
14


All 50 states have enacted surrogate decision-making legislation which
designates the hierarchy of relations (kinship) who can legally make medical decisions on
behalf of another when no AD exists, and should be called upon when the patient has not
left specific written instructions (LW) in advance (Pope, 2012; Silveira et al., 2010). This
default surrogacy is the most common medical surrogate decision-maker or health care
representative in the US (PA Act 169, 2006; Pope, 2012). All states have codes which
delineate to whom decisions for medical care fall when patients are unable to decide for
themselves (Pope, 2012). In Pennsylvania, the state where this study plans to take place,
PA Act169 affirms that when there is no evidence of official health care agent
designation, and the individual is either at end-of-life or permanently unconscious,
end-of-life medical decision-making duties fall first to the married spouse, then adult
children, the patient’s parents, adult siblings of the patient, followed by adult
grandchildren, and finally, when none of these individuals can be located, are
disinterested, or do not exist, an adult with knowledge of the patient’s preferences may be
called upon to decide medical care for an incapacitated individual (see Figure 2) as
stipulated in chapter 6000 of The Pennsylvania CODE (Health Care Decision-Making,
2004; The Pennsylvania CODE §6000.1014, 2011). This Act further specifies
limitations on the designation of the health care representative, and directs that those not
eligible to act as DPOA include the patient’s attending physician, or other health care
provider, as well as the owner, operator or employee of a health care organization or care
facility where the patient receives care (PA Act 169, 2006). Only when these surrogate
decision-making candidates are not available or satisfactory, does it become necessary for
the courts to be summoned to appoint a guardian (Pope, 2012) on behalf of the patient.
15


In an effort to protect patient autonomy and make appropriate medical care
decisions for the individual, Orr (2004) suggests that the surrogate must agree that a
decision needs to be made, and appreciates the importance of this decision. The
surrogate must be counseled to understand the options being proposed, the risks, burdens
and benefits, and to ideally make decisions using substituted judgment (Billings, 2011b;
Orr, 2004; Shalowitz et al., 2006; Silveira et al., 2010; Van Eechoud et al., 2014). In
other words, the decision-makers should, whenever possible, know the patients well
enough to make the decisions that the patients would likely make for themselves, if they
were able to do so.
Unfortunately, even when surrogacy for medical decision-making is established,
as outlined by the state’s code, preferences for care are not guaranteed to support the
wishes of the incapacitated patient (Song, Ward, & Lin, 2012). Song and colleagues
determined, while studying end stage dialysis patients, that their medical surrogates were
confident about their ability to carry out the preferences of the patient at end-of-life,
without fully understanding or appreciating the actual wishes of the incapacitated person
on whose behalf they were making decisions (Song et al., 2012). Additionally, surrogate
medical decision-makers have admitted that they suffered a great deal of burden because
they did not know what their loved one’s preferences actually were, as their loved ones
never communicated their end-of-life wishes in a clear and meaningful way (Braun,
Beyth, Ford, & McCullough, 2008; Van Eechoud et al., 2014; Vig et al., 2007).
Pope too, discovered that surrogate medical decision-makers were often unaware
of patient’s preferences for self-determination (Pope, 2012). Additionally he discovered
that at times, surrogates themselves had impaired capacity, and that this could have
16


influenced the medical decisions that were being made (Pope, 2012). Thus, his findings
suggested that surrogates did not always use substituted judgment to uphold the patient’s
medical care wishes; rather they inserted their own wishes ahead of those of the patient
(Pope, 2012). Finally, surrogates may be at odds with the patient or with other family
members, and this discourse could have influenced the decisions made for medical care
by surrogate decision-makers (Billings, 2011b; Pope, 2012; Shalowitz et al., 2006). All
these concerns leave the health care team to question the authenticity of the decisions for
care made for their patients by medical surrogates.
Despite concerns surrounding the reliability of substituted judgment, when
patients are incapable of making their own medical decisions for care, the surrogate
decision-maker is still the best option available to speak on the patient’s behalf (Pope,
2012; Shalowitz et al., 2006). Health care teams must be aware that surrogate decision-
making is not an exact science and since they must advocate on behalf of their patients, it
is prudent to be aware that there are inconsistencies in surrogate decision-making, and
that they have a responsibility to discuss such concerns with the medical surrogates
accordingly (AMA, 2001). In an effort to arrive at the most reliable medical surrogate
decision-making, health care teams must be available to effectively communicate
information, medical conditions, and prognoses to medical surrogates, families, and
fellow care providers (Billings, & Block, 2011; Chai & Meier, 2011). The best way to
minimize the need for medical surrogacy is for health care teams to pro-actively advocate
for advanced care planning while patients are still capable of making their own decisions,
and having family included in these conversations may lighten their burden should these
ADs need to be enacted (Barrio-Cantalejo et al., 2009; Roeland et al., 2014; Silveira et
17


al., 2010; Van Eechoud et al., 2014; Vig et al., 2007). Having the patient’s wishes
documented in advance can allow health care teams to guide and support medical
surrogates who may otherwise be incapable of providing medical decisions which are
congruent with what the patient would have decided, if she/he were able to do so (Pope,
2012; Torke et al., 2008).
The Palliative Care Team-led Family Meeting
The PCT is one medical service which provides expertise in patient, family and
medical team communication (Billings, 2011a; Billings, 2011b; Billings, & Block, 2011;
Quill et al., 2010). One of the main interventions provided by PCTs is the PCT-led
family meeting, which provides the opportunity to initiate sincere, direct, and honest
conversation with the patient (when able), the medical surrogate and family, surrounding
the reality of the patient’s condition (Billings, 2011a; Fosler et al., 2015; Quill et al.,
2010). Family meetings are typically conducted by an interdisciplinary group of health
care providers, and often times include physicians, nurses, social workers, chaplains, and
pharmacists (Fineberg, 2005; Quill et al., 2010; Rosensweig, 2012). The principle
purpose for the meeting is to determine what information the participants have and what
information they may need regarding the patient’s condition and treatment options, in
order to make a thoroughly informed decision about immediate and future health care
options (Fineberg, 2005; Quill et al., 2010). The information provided often addresses
questions regarding prognosis and gaps in the decision-maker’s understanding of what is
transpiring medically (Fineberg, 2005). Therefore, the goal of the PCT-led family
meeting is to prepare the patient (when capable) and surrogate medical decision-maker to
fully understand what is transpiring with the health of the patient (Fineberg, 2005; Quill
18


et al., 2010; Rosensweig, 2012). The medical decision-maker can then decide more
confidently to either continue aggressive, restorative cure focused care with or withoutthe
addition of comfort measures, or to change the focus of care to a comfort, quality of life,
symptom management pathway of care (Billings, 2011b; Quill et al., 2010; Rosenzweig,
2012).
Interdisciplinary PCTs are skilled at utilizing a step-wise framework while
facilitating difficult conversations and delivering bad news (Back et al., 2009; Medical
College of Wisconsin, 2010) (see Appendix I). Using the acronym SPIKES during these
family meetings allows PCTs to organize conversations with patients and families by
addressing the Setting, Perception, Invitation to participate, delivery of Knowledge,
acknowledge Emotions and to Summarize the information that has been delivered
(Kaplan, 2010). The family meeting empowers those in attendance to participate in
informed decision-making which can directly guide the pathway of care for the
incapacitated patient (Hudson, Quinn, O’Hanlon, & Aranda, 2008; Quill et al., 2010).
African Americans and the PCT-led family meeting. The dynamics of each
PCT-led family meeting are as unique and distinctive as each patient and family, and can
prove to be a challenge for the PCT members involved as they discuss end-of-life
concerns and options with African American patients and their families (Candib, 2002;
Taxis, 2006). Many factors, including beliefs and values of the stakeholders, are thought
to contribute to the decisions made during these meetings (Boyd et al., 2010; Candib,
2002). The Initiative to Improve Palliative and End-of-Life Care in the African
American community, funded by the Open Society Institute’s Project on Death in
America in 2000, identified barriers to African American communities’ acceptance of,
19


access to, and utilization of palliative and hospice services, which PCT-led family
meeting facilitators must be aware (Payne, 2001). These barriers include “mistrust of the
health care system, lack of effective end-of-life planning, lack of appreciation for the
spiritual aspects of healing and dying, and regarding pain and discomfort as an
anticipated part of the dying process” (Payne, 2001, p. 153).
The race and culture of the stakeholders who participate in the PCT-led family
meetings to discuss end-of-life issues, as well as the life history with the patient, can
influence the decision-making which takes place during these meetings (Boyd et al.,
2010; Candib, 2002; Fosler et al., 2015; Johnson, Kuchibhatla, & Tulsky, 2008). Cultural
considerations need to be appreciated and addressed by health care providers, when
discussing end-of-life considerations with this study population.
African Americans have unique perspectives on illness, the death and dying
experience, and the decision-making for goals of care (Johnson et al., 2008; Taxis, 2006).
Differences in decision-making patterns of African Americans and Caucasians regarding
end-of-life practices have been described by Born and colleagues, and others (Born,
Greiner, Sylvia, Butler, & Ahluwalia, 2004; Braun et al., 2008; Givens, Tjia, Zhou,
Emanuel, & Ash, 2010; Reynolds, Hanson, Henderson, & Steinhauser, 2008; Smith,
McCarthy, & Paulk, 2008; Taxis, 2006). In particular, these differences include lower
completion rates of ADs by African Americans, as well as, a decreased willingness to
consider hospice care at end-of-life (Born et al., 2004; Braun et al., 2008; Givens et al.,
2010; Reynolds et al., 2008; Smith et al., 2008; Taxis, 2006). PCTs who conduct family
meetings should appreciate the unique impact of racial and cultural influences on
decisions made for goals of care at end-of-life for African Americans, and consider
20


tailoring their approaches to these meetings to better meet the needs of the medical
decision-makers. (Fosler et al., 2015; Mazanec, Daly, & Townsend, 2010).
The impact of historical struggles, trust of the medical community, family
connectedness and life history with the patient, the importance of faith and spiritual
beliefs are said to influence the health care decisions made by African Americans (Boyd
et al., 2010; Candib, 2002; Johnson et al., 2008; Mazanec et al., 2010). This will be
discussed in greater detail in Chapter 2.
Statement of Problem
Dying, hospitalized patients often do not have mental capacity to participate in
medical decisions and are too ill to communicate their end-of-life wishes, leaving 86% of
these goals of care decisions to be made by surrogate medical decision-makers (Limerick,
2007). As discussed previously, in the US, all patients have the right to self-
determination, even those patients unable to communicate their goals of care pathway
wishes at end-of-life (Cerminara, 2011). When patients are unable to communicate these
wishes, medical surrogates, preferably those who know the patient well should use
substituted judgment to decide for the patient’s end-of-life medical care (Orr, 2004).
That is, the medical surrogate should make the decisions the patient would make, if
she/he were able (Orr, 2004) to do so themselves.
The IOM has recently (September 14, 2014) released their report, Dying in
America: Improving Quality and Honoring Individual Preferences Near the End of Life.
This report is the modern adaptation of previous reports the IOM has issued regarding
end-of-life treatment for Americans (IOM, 2014). The report highlights deficiencies in
the care of those with serious illnesses in five key areas: patient centered and family
21


focused care delivery, communication, provider education regarding end-of-life issues,
policies, reimbursement for health care services, and public education and engagement
(IOM, 2014). This report suggests that palliative care services should be employed to
address these deficiencies (IOM, 2014). This report also provides information to health
care providers, organizations, and society to embrace palliative care for those with
serious chronic, debilitating illnesses because all Americans deserve high-quality,
coordinated, practical health care which is accessible and affordable (IOM, 2014).
The researchers have observed that at end-of-life, surrogate medical
decision-makers for the patients of interest often opt for continued life-sustaining,
aggressive, restorative treatment which can prove to be uncomfortable, burdensome,
futile, and expensive. These medical surrogates seem less interested in opting for
comfort focused care, which is less aggressive and burdensome for the patient, and
associated with a greater quality of life during the final months, weeks, days and hours.
As a consequence, African American patients seem more likely to die in the hospital, in
Intensive Care Units (ICU), surrounded by life sustaining equipment, experiencing
expensive and burdensome treatment rather than dying at home or other home-like
environment, surrounded by loved ones (Emanuel, 2013).
The purpose of the PCT-led family meeting for the patients of interest is to
honestly inform and support surrogate medical decision-makers as they undertake the
decision-making process on behalf of a loved one (Fineberg, 2005; Quill et al., 2010;
Rosensweig, 2012). Little is reported regarding the effectiveness of the PCT-led family
meeting when surrogate medical decision-makers are called upon to make goals of care
decisions for the patients of interest.
22


Statement of Purpose
The purpose of this research study was to explore if variables such as a PCT-led
family meeting, an AD as a LW and DPOA, the age of the patient, the gender of the
medical surrogate, and kinship of the medical surrogate to the patient influenced the
decisions made for goals of care at end-of-life (either aggressive, restorative care, or
comfort, quality of life focused care) by surrogate medical decision-makers for the
patients of interest who are unable to make their own decisions for care at end-of-life.
Pre-study data, evaluating the satisfaction of medical surrogates with their PCT-led
family meeting experiences has discovered that those surveyed by the team are
overwhelming satisfied with their experiences. However, these data do not disclose
whether their level of satisfaction influences the decisions that are made following the
PCT-led family meeting experience. By securing evidence as to whether participating in
the PCT-led family meeting, and other characteristics as listed above influenced the
decision-making of medical surrogates of this population, PCTs could plan and conduct
future meetings to more effectively address the needs of their participants who elect the
decisions for care at end-of-life for another.
Significance of the Study
The guidance and support that PCTs provide to patients, families, and surrogate
decision-makers during the PCT-led family meeting, as they consider goals of care
decisions at end-of-life, has the potential to greatly improve quality of care and quality of
life for the patients, and families in question (Kaplan, 2010; Sherman & Cheon, 2012).
Additionally, the information given by PCTs during the family meeting has the capability
to save millions of dollars in medical resources for patients and families, organizations,
23


and the US economy collectively when patients, families, and surrogate medical
decision-makers elect for comfort, quality of life focused care rather than for aggressive,
discomforting, restorative care which may be considered futile, when prognosis is poor
(Chai & Meier, 2011; Sherman & Cheon, 2012).
There is clear value to knowing that the PCT-led family meeting experience is
designed to meet the needs of its participants. Having a greater understanding of whether
certain characteristics (patient age, medical surrogate’s gender and their kinship to the
patient) could contribute to the end-of-life goals of care decision-making following the
PCT-led family meeting on behalf of the patients of interest, could support PCTs in their
approaches when planning and facilitating their family meetings (Boyd et al., 2010;
Candib, 2002). Having a deeper appreciation for the influences of culture and family
connectedness at end-of-life could drive PCTs to customize their approaches to family
discussions that would allow medical surrogates to more fully grasp the complexity of the
patient’s illness, and therefore, prompt collaborative care planning that would align
closely with the values of the patient (Boyd et al., 2010; Johnson et al., 2008; Kaplan,
2010).
Specific Aims
The specific aims of the study:
1. Identify the end-of-life decisions made by surrogate medical decision-makers for
hospitalized, incapacitated, senior, African Americans with life limiting
illnesses; either restorative, cure focused care pathway; or comfort, quality of life
focused care pathway prior to, and following the participation in a PCT-led family
meeting.
24


2. Compare decisions made by surrogate medical decision-makers for end-of-life
care pathway for hospitalized, incapacitated, senior, African Americans with life
limiting illnesses after participating in a PCT-led family meeting, with what
patients had dictated for their own end-of-life care using a LW.
3. Examine the relationships between patient’s age, surrogate medical decision-
maker gender, and kinship to the patient, and the goals of care decisions made
by medical surrogates for hospitalized, incapacitated, senior, African Americans
with life limiting illnesses.
Research Hypotheses
Hypothesis #1: The surrogate medical decision-maker who participated in a PCT-
led family meeting would not make decisions to change the end-of-life care pathway
(restorative versus comfort focused) for hospitalized, incapacitated, senior, African
Americans with life limiting illnesses; they would be more likely to continue to opt for
aggressive, curative, restorative treatment over a comfort focused, quality of life care
pathway for another.
Hypothesis #2: Few hospitalized, incapacitated, senior, African Americans with
life limiting illnesses have a LW, but of those who did, their medical surrogate decision-
makers acquiesced to the patient’s stated wishes, as stipulated in the document.
Hypothesis #3: The end-of life care pathway decisions made by medical surrogate
decision-makers for hospitalized, incapacitated, senior, African Americans would show:
 No correlation between age of the patient, and her/his medical surrogate’s
decision for goals of care pathway for the hospitalized, incapacitated, senior,
African American at end-of-life.
25


 No correlation between gender of the medical surrogate and the decision for goals
of care pathway for the hospitalized, incapacitated, senior, African American at
end-of-life.
 No correlation between kinship of the medical surrogate and the decision for
goals of care pathway for the hospitalized, incapacitated, senior, African
American at end-of-life.
Foundations of the Study
This study was based on the assumption that surrogate medical
decision-makers found PCT-led family meetings beneficial to gather information. They
gleaned a clearer understanding of the graveness of the patient’s situation, and that they
developed a better appreciation for what they could expect for the patient’s future
(Carrion, Park, & Lee, 2012). However, despite the sincere, honest communication they
received during these PCT-led family meetings, they were not likely to opt for comfort,
quality of life goals of care over restorative, aggressive, cure-seeking care (Carrion et al.,
2012).
Summary
The US federal government reported spending nearly $2.6 trillion on health care
costs alone in 2010, much of this sum spent caring for the chronically ill elderly
population (Henry J. Kaiser Family Foundation, 2013; IOM, 2014). By 2029, the US
Census bureau expects that 20% of the entire population will be over age 65, Medicare
eligible, and many suffering from chronic co-morbidities which are expensive to treat
(American Academy of Hospice and Palliative Medicine, 2013; IOM, 2014; Pollard &
Scommegna, 2014). Comparable to the population at large, the number of African
26


American adults living with advanced and complex chronic illnesses continues to grow
each year, and consequently the cost of medical treatment for the population is climbing
on an annual basis (IOM, 2008; IOM, 2014). Emanuel shared in 2013 Penn: Department
of Medical Ethics and Health Policy report that 30% of our government’s resources are
being spent on 6% of patients; and blames the intensive, aggressive, expensive,
burdensome and often times futile treatment that continues to be available and offered to
patients who are dying in US critical care units for this misuse of health care resources
(Emanuel, 2013).
Palliative care is a medical specialty that has been shown to greatly improve the
quality of life for patients and families facing life limiting illnesses, while also reserving
medical resources, and saving organizations millions of dollars (Chai & Meier, 2011;
IOM, 2014). PCTs offer family meetings to communicate sincere and honest information
regarding the health condition and potential prognoses of these patients, and to explain
the various options of care pathways available at end-of-life (Quill et al., 2010). When
patients no longer have the capacity to participate in family meetings or in
decision-making about their care options, and if there is no AD available, surrogate
medical decision-makers are often called upon to decide whether the patient’s treatment
pathway should continue to be restorative, aggressive, and cure-focused, with or without
comfort measures; or should it change to a comfort focused, quality of life, symptom
management, pathway of care (Limerick, 2007; Quill et al., 2010).
The phenomenon of interest for this study was decision-making among medical
surrogates who determine goals of care for the patients of interest. PCTs have the
potential to be effective in supporting surrogate medical decision-makers as they process
27


information and make decisions for goals of care on behalf of those suffering with life
limiting illnesses; and they can successfully accomplish this during a PCT-led family
meeting format (Hudson et al., 2008; Kaplan, 2010).
In order to fully understand this phenomenon, one must understand the state of the
science and literature regarding the following variables: African American culture,
health disparities, the medical community, patient/family satisfaction, PCT-led family
meetings, surrogate decision-making, goals of care at end-of-life, and self-determination
using an AD as a LW and DPOA. These concepts will be explored in Chapter 2.












28


CHAPTER 2: REVIEW OF LITERATURE
A review of the scientific literature was conducted to explore the effects of a
PCT-led family meeting on surrogate medical decision-making for goals of care
decisions for African Americans suffering with life limiting illnesses. This review of the
literature addressed PCTs, medical surrogates, and end-of-life decision-making of
African Americans. Imogene M. King’s grand level Conceptual Systems Theory
provided the framework for her Theory of Goal Attainment. This approach was used to
guide an exploration of the effect of PCT-led family meetings on end-of-life decision-
making among medical surrogates for the patients of interest, and whether particular
characteristics could further influence these decisions.
Process for Literature Review
An exploration of the peer reviewed literature utilizing Drexel University Library
database, Cumulative Index to Nursing & Allied Health Literature (CINHAL), OVID and
PubMed from 2000 to 2014, and using the search terms: “African Americans”, and “end-
of-life decisions”, was bounteous with references addressing African Americans and end-
of-life decisions for care. The review uncovered the resonating theme of how cultural
values and beliefs, spirituality, and family heritage are valued within the African
American population, and how these values influence decision-making, illness
perception, and the death and dying experience (Mazanec et al., 2010). However, a
search of these terms paired with the term “Palliative Care Team-led family meeting”,
yielded no additional references. Little was found which specifically examined the
influence of PCT-led family meetings on the end-of-life care decisions made by surrogate
medical decision-makers on behalf of the patients of interest.
29


Palliative Care Teams
The main goal of the PCT is to offer the opportunity to enhance the quality of care
to patients with life limiting illnesses and their families (Hudson et al., 2008; Quill et al.,
2010). The focus of palliative care is to effectively manage pain and symptoms of
disease, coordinate care delivery and align it with the goal preferences for care of the
patient and family (Fineberg, 2005; Hudson et al., 2008; Quill, 2010; Rosensweig, 2012).
The priority of the PCT is to deliver clear and direct communication among health care
providers, patients, and their loved ones, and can well be accomplished during a PCT-led
family meeting (Fineberg, 2005; Hudson et al., 2008; Quill et al., 2010; Rosensweig,
2012). Providing effective palliative care, through clear communication and management
of distressing symptoms, can increase patient and family satisfaction by enhancing the
dignity and quality of life for patients and families as well as enhance caregiver
fulfillment (Fineberg, 2005; Hudson et al., 2008; Quill, 2010; Rosensweig, 2012).
Additionally, palliative care has been shown to reduce health care expenditures by
lowering the cost of care and conserving health care resources, and in some instances, to
prolong life (Chai & Meier, 2011; IOM, 2014; Temel et al., 2010). Temel and colleagues
reported findings they observed during their evaluation of 151 lung cancer patients
(Temel et al., 2010). When compared to their control group of lung cancer patients who
received routine treatment alone, their study group, who received palliative care in
addition to routine treatment enjoyed a better mood and quality of life, and lived an
average of three months longer (Temel et al., 2010) then did their treatment only group.
The PCT is composed of an interdisciplinary group of health care professionals
which includes nurses and nurse practitioners, physicians, social workers, chaplains, and
30


pharmacists and is called upon to evaluate patient conditions, progress, and prognosis
(Quill et al., 2010). The pivotal intervention offered by the PCT is the “family meeting”
for purposes of goal setting (see Appendix I), which is planned and facilitated by the PCT
(Medical College of Wisconsin, 2010) and conducted using the SPIKES framework for
communicating bad news (Kaplan, 2010), as described in Chapter 1. The foundation of
the family meeting is the initiation of sincere and direct conversations with the patient
(when capable) and family, surrounding the reality of the patient’s condition (Quill et al.,
2010). The purpose of this family meeting is to determine what information and
understanding the meeting participants have and what they may still require, regarding
the patient’s condition; including prognosis, gaps in their understanding of what is
transpiring (Fineberg, 2005; Rosensweig, 2012) and what can be expected for the patient,
going forward. The family meeting empowers and provides those in attendance, the
opportunity to make decisions which could directly guide the pathway of care for the
patient (Hudson et al., 2008; Rosensweig, 2012); that is, either the continuation of cure
focused, restorative care pathway, where comfort measures could be added, or a change
to a comfort focused, quality of life pathway of care. The responsibility of the PCT in
these meetings is to enhance collaboration, uphold patient autonomy, and support the
medical decision-makers in generating decisions which are congruent with the patient’s
values and goals (Pollak, Childers, & Arnold, 2011). Zaide and colleagues discovered
through their retrospective chart review of 400 medical records, that the palliative care
consultation experience impacted completion rates of ADs in a positive way (Zaide et al.,
2013), and provided the health care team with valuable information which clarified the
future goals of care wishes of the patients they studied. Many organizations have come
31


to respect and embrace the work of PCTs, and have come to rely on PCTs to deliver
unsettling information to patients and families that other health care providers are
uncomfortable with, inexperienced or otherwise unavailable and unable to do effectively
(Rosensweig, 2012).
African American End-of-Life Decision Making
African Americans hold sacred certain values, beliefs, and health care rituals
which differ from those of dominant white society and are likely inspired by their African
roots, years of slavery, abuse, racism, medical experimentation, and oppression (Becker,
Gates, & Newsom, 2004; Payne, 2001; Taxis, 2006). In response, African American
social structures as family connectedness, church organizations which provided social,
spiritual, and traditional non-biomedical self-care health practices became a way for
support and survival in life and in death for African Americans who were refused access
to the health care opportunities of White American society (Becker et al., 2004; Candib,
2002; Johnson et al., 2008; Volandes et al., 2008).
It is the responsibility of the PCT to support the end-of-life care decisions of
patients and families, so it is important for these teams to appreciate and understand
participants’ culture, beliefs, values, family structure, traditions and spiritual influences
(Rosensweig, 2012). Understanding the cultural influences and priorities of meeting
participants may help to explain why African Americans make the end-of-life care
decisions that they do.
By examining the evidence, the researchers uncovered multi-factorial reasons to
consider why African Americans often choose the end-of-life care pathways which do not
always conform to the decisions made by mainstream American society in similar
32


situations. Mistrust of the health care system is one such influencing factor thought to
contribute the African American community’s reluctance to even discuss end-of-life care
with health care providers for fear of experiencing racism, neglect and withholding of
treatment (Candib, 2002; Johnson et al., 2008; Mazanec et al., 2010; Payne, 2001; Taxis,
2006).
mistrust of the health care system. While the root causes of African American
mistrust of the health care system are multi-factorial, years of slavery, racism and
segregation have certainly created behavior patterns, value systems, beliefs, protective
mechanisms, and perspectives which differ from, and are misunderstood by mainstream
American society (Johnson et al., 2008; Kennedy et al., 2007; Randall, 1996). It is
unfortunate, but African Americans hold a historic legacy of mistreatment by Caucasians
and by the American medical community (Kennedy et al., 2007). It has been posited that
many African Americans harbor mistrust of the health care system, citing conditions such
as: lack of access to care, poverty, institutional racism, discrimination, abuse and
historical discrimination by culturally incompetent health care providers, a dearth of
contemporaneous clinicians, inequality of treatment, and inequity of care (CDC, 2013;
CDC, 2014; Kennedy et al., 2007; Kraukaver & Truog, 1997; Mazanec et al., 2010; Wall,
2011b; Washington et al., 2008).
African American mistrust of the health care system may well be rooted in the
accounts which have been handed down through generations, recanting the misuse and
experimentation of the bodies and minds of African Americans by the medical
community, discussed in Chapter one (Kennedy et al., 2007; Suite et al., 2007;
Washington et al., 2008). While the Tuskegee Syphilis Study, which took place during the
33


last century (1932-1972) (Washington et al., 2008; White, 2000), was often the exemplar
of such misuse of African Americans, there were many confirmed accounts of rampant
abuse of African Americans over the years by the medical community. Additional
examples include repeated unnecessary surgery on slaves so that surgeons could perfect
skills and techniques, the involuntary use of African American corpses as cadavers for
medical education, the Sickle Cell Screening Initiative of the 1970s, the family planning
and involuntary sterilization which occurred during unrelated abdominal procedures in
American hospitals, known as Mississippi appendectomies in the 1960s-1980s, and the
Bell Curve Study in the 1990s, which falsely reported that the intelligence level of
African Americans was inferior to that of other groups (Kennedy et al., 2007; Roberts,
1998; Suite et al., 2007). These and other examples of slavery and post slavery misuses
of African Americans by the government, medical, and research communities have
validated the inherited mistrust of modern medicine and recommended healthcare
practices which continue to influence African American perception of the US health care
system, and decisions surrounding its utilization (Muni, Engleberg, & Treece, 2011;
Kennedey et al., 2007; Suite et al., 2007), and end-of-life care planning (Johnson et al.,
2008; Liao et al., 2011; Reynolds et al., 2008; Taxis, 2006; Washington et al., 2008).
In 2006, Jacobs and colleagues searched for reasons which contributed to this
mistrust of physicians by African Americans. To more fully appreciate what trust and
distrust in physicians meant to African Americans, these researchers used an open-ended
discussion guide with focus groups of 66 African American men and women, and
uncovered several themes which crossed gender lines that suggested mistrust was
generated when a physician neglected to provide interpersonal engagement (compassion,
34


empathy, patience and listening), bestowed a perception of poor technical competence
(treatment failure, or a poor outcome), or displayed a perceived quest for profit as the
physician provided care (Jacobs, Rolle, Ferrans, Whitaker, & Warnecke, 2006).
Jacobs and colleagues in 2011 again used focus groups to explore whether trust in
the health care system continued to vary across diverse groups. The resulting themes
revealed that within their nine groups of African Americans, distrust of the health care
system was fueled by their expectations of being treated with discrimination, and
experimentation, even while seeking routine care (Jacobs et al., 2011).
health literacy. In addition to mistrusting the health care system, health literacy
is also thought to impact factors as one’s ability to access health care, participate in health
promotion, and maintenance opportunities, and make appropriate health care planning
decisions (AMA, 2004; Department of Health, 2009). All of these could ultimately
affect one’s health and ultimately their quality of life. Health literacy is defined by the
US Department of Health and Human Services, and referenced by the IOM as “the
degree to which individuals have the capacity to obtain, process, and understand basic
health information and services needed to make appropriate health decisions” (IOM,
2004, p. 1).
Using this definition Kutner and colleagues of the American Institutes for
Research measured the health literacy of 19,000 American adults on behalf of the US
Department of Education (Kutner, Greenberg, Jin, & Paulson, 2006). They found that
while many characteristics influenced health literacy (age, gender, education level,
language, family, poverty, insurance, and occupation); race was a strong indicator for
poor health literacy (Kutner et al., 2006). Twenty four percent of African Americans
35


tested in their sample scored below basic health literacy standards, as compared to other
races raising concerns that low health literacy may influence the quality of health and
quality of health care services one enjoys (Agency for Healthcare Research and Quality,
2004; Kutner et al., 2006; Weekes, 2012) .
Following this work, Drainoni and colleagues, in their 2008 study of 231 HIV
positive clients from three urban outreach centers, used a paper and pen survey
instrument to measure the health literacy of this population. Their results indicated that
the 28% of their sample who scored in the lower levels of health literacy were likely to be
African American or Latino and raised concerns regarding on-going compliance with
treatment options and health outcomes of the chronic conditions in this low health
literacy population (Drainoni et al., 2008, Weekes, 2012).
A third study which demonstrated that race influenced health literacy (prostate
cancer knowledge), evaluated a group of 25 African American men in South Carolina
(Friedman, Corwin, Dominick, & Rose, 2009). Friedman and colleagues not only tested
this sample with validated health literacy survey instruments, they also conducted focus
group interviews with their participants (Friedman et al., 2009). Interestingly, their
sample tested satisfactorily for health literacy on paper, however, their focus groups
interview results revealed limited understanding and various misconceptions about
prostate cancer and associated risks (Friedman et al., 2009). Unpredicted themes evolved
surrounding the participants’ fervent interest in obtaining information to better
understand screening opportunities and care (Friedman et al., 2009).
Low health literacy puts patients at potential risk for health care disparities and
sub-optimal health care planning (Friedman et al., 2009; Weekes, 2012). Identifying
36


populations, as African Americans, who may be at risk and offering them opportunities
for improved health literacy could greatly reduce such disparities, improve health
outcomes and communication, and bring to this population a greater understanding of the
options available to them throughout their continuum of care Drainoni et al., 2012;
Friedman et al., 2009; Weekes, 2012).
self-determination. Traditionally African Americans have a lower use of
do-not- resuscitate (DNR) orders, higher preference for cardiopulmonary resuscitation
(CPR) and artificial feeding tube use, and lower withdrawal of life-sustaining therapy
rates than other cultures (Born et al., 2004; Braun et al., 2008; Reynolds et al., 2008;
Taxis, 2006). African Americans are also less likely than other cultures to exercise their
right to self-determination and to complete ADs as a LW and DPOA (Born et al., 2004;
Braun, et al., 2008; Payne, Armstrong, Johnson, & Robinson, 2008). Johnson and
colleagues surveyed 205 adults age 65 and older regarding end-of-life issues, including
the completion of an AD (Johnson et al., 2008). Their findings illustrated that four times
as many Caucasians as African Americans had completed one such document (Johnson et
al., 2008). Jenkins and colleagues utilized focus group interviews with African
Americans who had witnessed the dying of loved ones either at home or in the hospital,
and discovered that just eight percent of their African American population had
completed ADs (Jenkins, Lapell, Zapka, & Kurent, 2005), which left major end-of-life
care decision-making to their family members and medical surrogate decision-makers,
rather than themselves determining and communicating their own preferences (Braun et
al., 2008; Torke, Garas, Sexson, & Branch, 2005) in advance of becoming incapacitated.
African Americans had been more likely to endure high intensity, expensive end-of-life
37


care in intensive care units, and were likely to die in the acute care hospital setting (Born
et al., 2004; Braun et al., 2008; Carrion et al., 2012; Taxis, 2006) rather than in the
comfort of their home environments. Interestingly, the findings of Zaide et al. discussed
earlier, suggested that undergoing a palliative care consult could impact the completion
rates of ADs for Caucasians and African Americans in a similar way (Zaide et al., 2013).
The American Public Health Association (2008) defined self-determination as a
patient’s autonomous right to express her/his wishes for end-of life care in a LW or to
appoint a surrogate medical decision-maker to advocate on her/his behalf (DPOA) when
she/he could no longer decide on care options for herself/himself. Along with the right to
pain and symptom management, end-of life care wishes communicated in these ways are
legally upheld and should be honored by the patient’s health care providers (Cerminara,
2011; Jenkins et al., 2005). This disregard for self-determination and resulting low
completion rates of ADs as a LW and DPOA has been identified as a health care disparity
because speculating on the end-of-life care pathway preferences of the patient may not
provide her/him the treatment they desire (Braun et al., 2008; Zaide et al., 2013) and
frustrate care providers.
This lack in guidance from the patient had been found to cause emotional anguish
to the loved ones who were left to make such end-of-life goals of care medical decisions
on the patient’s behalf (Barrio-Cantalejo et al., 2009; Braun et al., 2008; Roeland et al.,
2014; Silveira et al., 2010; Van Eechoud et al., 2014; Vig et al., 2007). Braun and
colleagues used purposive sampling by race and focus group interviews to examine
burden of end-of-life decision-making in 44 surrogate decision-makers (Braun et al.,
2008). The researchers found that regardless of race or ethnicity, surrogate decision-
38


makers for those with life limiting illnesses, experienced significant, multidimensional
burdens, due mainly to their own admitted uncertainty regarding the patients’ actual
preferences and wishes (Braun et al., 2008).
Issues surrounding death and dying can be difficult to discuss between loved
ones, and therefore end-of-life wishes may not readily be shared by family members.
Health care providers may be uncomfortable discussing death and dying or lack
knowledge regarding the importance of having such conversations with family members
early in a disease process and consequently do not encourage family members to share
their end-of-life wishes. Additionally, health care providers may be unfamiliar with the
cultural influences surrounding death and dying and as a result are ill-prepared to
effectively discuss end-of-life issues in a meaningful way with patients and families
whose cultures differ from their own. No matter the cause, inadequate communication is
most likely to blame for the resulting family burden which develops (Braun et al., 2008;
Roeland et al., 2014; Van Eechoud et al., 2014) when one is faced with making end-of-
life and care pathway decisions without the proper instruction and guidance from the one
they are tasked to represent.
concordant health care providers. Patients’ and families’ end-of-life
decision-making may be influenced by the culture, beliefs, and characteristics of the
health care providers in attendance (Jacobs et al., 2006; Smith, Davis, & Krakauer, 2007).
Zapka and fellow researchers interviewed 51 African Americans who reported increased
comfort, connectedness, and fewer symptoms at end-of-life when their care was provided
by concordant health care providers (Zapka et al., 2006), that is, by African American
physicians and other African American health care providers on the medical team.
39


While African Americans made up roughly 14.2 % of the US population in 2012
(Centers for Disease Control, 2014), just 6% of the Nation’s physicians are African
American (US Department of Health and Human Services, 2012). This dearth of African
American physicians practicing in the US has made it nearly impossible to meet this end-
of-life requisite of some African Americans, based on concordant physician availability
(Ellis, 2011). Concordant health care providers may hold the key to educating African
American patients and families regarding end-of-life care options and the importance of
completing ADs, and of communicating their end-of-life care preferences to their
surrogate medical decision-makers in advance of needing to have such decisions made on
their behalf. However, all health care providers, no matter their race or culture, must
honor the need for grounded, focused, patient and family-centered communication, and
care that authentically demonstrates cultural sensitivity as they care for seriously ill
patients at end-of-life (Mazanec et al., 2010).
self-care. Cultural values, practices, traditions, and rituals are the backbone of
family and community structure. These practices often include non-biomedical self-care,
rituals, and healing practices intended to enhance health, prevent disease, limit illness,
provide comfort, and restore wellness in communities which lack access to health care
(Becker, Gates, & Newsom, 2004; WHO, 1984). Nursing theorist Dorothea Orem
defined self-care in the 1990s as a behavior which one learns, often during childhood,
from family or trusted community mentors; because it holds meaning, it is handed down
inter-generationally (Banfield, 2013; Kenney, 2013; Orem, 1995).
To specifically examine the self-care practice of African Americans, Boyd and
colleagues used logistic regression to perform a secondary analysis of the results of the
40


National Survey on Black Americans, a cross sectional survey of 2107 African American
adults published in the early1980s (Boyd, Taylor, Shimp, & Selmer, 2000). These
researchers discovered that 70% of African American families surveyed used home
grown remedies and practiced self-care for chronic medical conditions, citing poverty,
lack of health insurance, poor access to care, fears regarding health care system racism,
expectations concerning biomedical experimentation, and lack of knowledge, for their
underuse of modern American medicine (Boyd et al., 2000).
Becker and associates interviewed 167 African Americans who suffered from
chronic health conditions, and they uncovered three basic themes from their sample
(Becker et al., 2004). These included the importance of spirituality, social support and
advice from their community, and non-biomedical healing traditions; these themes were
present regardless of socioeconomic status (Becker et al., 2004). These researchers also
noted that while all in their sample utilized self-care approaches in addressing their health
needs, those with health insurance more frequently reported self-care practices which
were influenced by physicians and health education programs (Becker et al., 2004),
suggesting that health literacy and resources may impact self-care practices.
Health care providers who treat African Americans must appreciate that self-care
practices are generationally grounded and respected in African American culture. Family
and group connectedness within African American communities generationally treasured
and revered above any one individual’s right to autonomy; a right which has historically
been embraced as a cross-cultural universal in the eyes of the white majority (Becker et
al., 2004; Mazanec et al., 2010). Understanding and honoring these truths may help to
shed clarity on why African Americans may make the health care decisions and
41


end-of-life care pathway decisions they do.
where to die. Patients die in many places. Some prefer to die at home,
caretaker’s home, or home-like environment as a nursing home, while others prefer to die
in an acute care facility as a hospital. Jenkins and colleagues used African American
focus groups to develop themes which surrounded end-of-life preferences, based on
responses of African American family members who either had loved ones die in the
hospital or at home (Jenkins et al., 2005). Thematic analysis revealed familial concerns
related to health care providers’ communication styles and care planning, patients’
spiritual beliefs, the availability and access to resources, and compassionate care (Jenkins
et al., 2005). While racial preferences for dying in the hospital versus at home were not
delineated, conclusions supported the need for health care providers to listen,
communicate clearly, and tailor their approaches to each patient and family, no matter
where they have chosen to spend their final days (Jenkins et al., 2005).
In the US, 25% of all chronic disease deaths take place in nursing homes
(Reynolds et al., 2008). Reynolds and colleagues reviewed 1,133 patient charts from
twelve US nursing homes for demographics and end-of-life considerations; the mean
sample age of 83 years (Reynolds et al., 2008). Findings suggested that minorities were
less than half as likely to have DNR orders, eight times less likely to have LW, and three
times less likely to have DPOA as their Caucasian counterparts (Reynolds et al., 2008).
Also noted, of those with completed ADs, the African American preference was for a
health care proxy decision-maker over a LW document (Reynolds et al., 2008). This may
be a result of the African American culture valuing family connectedness over self-
42


determination and autonomy (Candib, 2002; Johnson et al., 2008). Additional findings
revealed that it was rare for nursing home care providers to have ever communicated
end-of-life or palliative care options to any patient in their care as just 7% of the records
reviewed included any documentation of end-of-life planning, regardless of race
(Reynolds et al., 2008).
Options for care discussions at end-of-life are not only uncomfortable and
unsettling for patients and families, but for many of their health care providers as well,
and as a result, these discussions are often non-existent, unproductive, and/or
dissatisfying. When health care teams are unable to provide patients and families with
on-going, sincere, honest and straightforward discussion and education of the gravity of
the medical situation, it would be difficult for care providers, patients and families to
build trustful relationships. When there is a lack of confidence and trust in the health
care team’s abilities, the myths and misconceptions that tragic historical accounts of
medical injustice and deception are bound to continue (Reynolds et al., 2008).
communication. Clear and honest communication with patients and families is a
key factor when questions regarding end-of-life preferences need to be addressed (Chai &
Meier, 2011). Welch and colleagues utilized the 5 Domains of Life Care Model for
patient and family centered care to survey 1,447 close family members of deceased
African Americans from 22 American states (Welch, Teno, & Mor, 2005). Their results
suggested that African Americans were more likely to be dissatisfied with end-of-life
care than Caucasians (Welch et al., 2005). African Americans were more likely to opt for
restorative care over comfort care, and African American families suffered more
devastating financial burden while this care was being rendered (Welch et al., 2005).
43


African Americans admitted to being disappointed with communication-related
aspects of their care from their health care providers, and listed inadequate discussions
around the plan of care and what was to be expected, advanced care planning, and goal
clarification (Welch et al., 2005) as their greatest area of dissatisfaction. The researchers
also noted that African Americans preferred family-based oral communication over
written documents (Friedman et al., 2009; Welch et al., 2005).
Mack and colleagues evaluated the end-of-life care planning of 332 Caucasian
and African American cancer patients in a multi-institutional organization (Mack, Paulk,
Viswanath, & Prigerson, 2010). Despite having comparable end-of-life discussions with
health care providers, African Americans continued to receive prolonged, aggressive,
burdensome end-of-life care, and concluded that African Americans did not attain the
same outcomes from end-of-life discussions as their Caucasian counterparts (Mack et al.,
2010).
Health care providers adequately trained to provide quality patient and family
communication which is tailored to meet the needs of the individual patient and family
could play a key role in eliminating some of these health care disparities and frustrations
at end-of-life for the patients of interest, as discussed in the literature (Welch et al.,
2005). Unfortunately, a resounding theme which may explain why African Americans
are often not prepared to make end-of-life care decisions, suggests that health care
providers are often not sufficiently prepared to conduct effective patient and family
communication as it relates to discussing end-of-life care planning (Fineberg, 2005;
Hudson et al., 2008; Rosensweig, 2012). In response, some organizations have
developed PCTs whose responsibility and purpose is to provide these services to patients
44


and families facing end-of-life issues and uncertainties (Fineberg, 2005; Hudson et al.,
2008; Rosensweig, 2012).
Satisfaction with PCT Services
Besides enduring poor and ineffective communication with health care providers,
families often witness care delivery that they believe is unsatisfactory, which can create
additional burden and distrust for them as they watch their loved one suffering (Ringdal,
Jordhoy, & Kaasa, 2003; Roeland et al., 2014). PCTs can assist in alleviating some of
this family burden by outlining a plan of care which alleviates pain and suffering and the
burdens of ineffective treatment. The PCT brings sincere and honest communication to
the bedside of dying patients, as well as creating care plans which consider patients and
family preferences, thus instilling greater satisfaction and trust with the health care
experience that families are witnessing (Chai & Meier, 2011; Kaplan, 2010; Quill et al.,
2010; Roeland et al., 2014). The evidence as to whether PCT-led family meetings are
even beneficial for medical surrogates is imperative as organizations work to restructure
service lines to more efficiently maintain their bottom lines while complying with the
Affordable Care Act regulations which continue to unfold over the coming years. The
efforts of PCT interventions should be studied, measured, and reported so that the
benefits that PCTs provide to patients and families can be realized, appreciated, and
endorsed within the health care arena (Chai & Meier, 2011; Ringdal et al., 2003).
Unfortunately the contributions offered by the PCT-led family meeting have not been
well studied, and so there is a dearth of instruments available to reliably measure the
effects of PCT efforts with patients and families at end-of-life (Lo, Burman, Rodin, &
Zimmermann, 2009).
45


measuring satisfaction. The patient and family’s degree of satisfaction is an
indicator of the quality of the care being rendered (Ringdal et al., 2003). One scale
developed to specifically measure satisfaction with palliative care services was identified
in the literature. The FAMCARE-2 scale (see Appendix F) is a third generation scale that
specifically measures family satisfaction with palliative care services (Aoun, Bird,
Kristjanson, & Currow, 2010), including satisfaction with the PCT-led family meeting.
FAMCARE-2 scale is scored using ordinal Likert scale metrics which ascribes a
quantitative value to qualitative data so that statistical analysis may be applied (Likert,
2013). The knowledge gained through these satisfaction survey results can be used by
PCTs to further develop the quality and usefulness of the PCT-led family meeting
process.
The PCT participating with this study utilized the FAMCARE-2 scale for a
department performance improvement effort to survey 157 of the surrogate medical
decision-makers who participated in their family meetings. Ninety-four percent of the
surrogates reported being satisfied-very satisfied (4-5/5 score) with the PCT-led family
meeting experience regardless of their decision for goals of care pathway for their
incapacitated loved one.
Theoretical Framework
Theories based on empirical evidence derived through scientific inquiry can act as
the foundation for new, as well as, on-going research. Pioneer nursing theorist Imogene
M. King’s Theory of Goal Attainment, which stems from the notion that nurses want to
interact with patients, is meant to assist nurses in the nurse-patient relationship where the
nurse assists the patient in meeting health care goals (Nursing Theory, 2013).
46


theory of goal attainment. Nursing theorist, Imogene M. King believed that
nurses help patients to interact with their environment in a way that supports health
maintenance and movement toward self-fulfillment and goal achievement (King, 1999).
King’s theory is the conceptual system which focuses on individuals each as personal
systems, two or more individuals together as interpersonal systems, and entire, organized
boundary systems which regulate the roles, behaviors, and values of all these personal
and interpersonal systems (Frey, Sieloff, & Norris, 2002). Interactions within and across
these personal, interpersonal, and boundary systems influence human actions and
behaviors, and subsequently effects health outcomes (Sieloff & Frey, 2007). King used
her Model of Nurse-Patient Transactions (see Figure 3) to develop her Theory of Goal
Attainment; where interpersonal systems as nurse-patient transactions are used to achieve
the patient’s goals of care, no matter what those goals are (King, 1994). Her theory was
based in general systems theory which King used to evaluate nursing within whole
boundary systems (King, 1997).
King used her Theory of Goal Attainment to evaluate the process of nursing with
an emphasis on nursing outcomes; that is, the goals achieved could be used to evaluate
the effectiveness of the care rendered (Sieloff & Frey, 2007). The nurse-patient
transaction process in her Theory of Goal Attainment is integral in the delivery of
evidence-base nursing practice because it impacts the resulting health care outcomes
(Messmer, 2007). This conceptual framework and theory were first published by Dr.
King in 1968 in Nursing Research in an article called: A conceptual frame of reference
for nursing (King, 1981).
47


theory application. In her model, Dr. King described a system of roles,
behaviors and practice patterns, where an interpersonal interaction between two people
who are usually strangers takes place; that is, individuals come together through the
health care system where one is to help and the other is to be helped (King, 1999) (see
Figure 3). Mutual goal attainment occurs when the patient and the nurse are both
satisfied with the outcome of the transaction, a result of effective nursing care being
delivered (King, 1999). For the purpose of this research, goal attainment referred to the
decisions made by the surrogate medical decision-maker for goals of care pathway for the
patients of interest, as a result of a transaction between the surrogate medical decision-
maker and the nurses, physicians, and others who comprise the interdisciplinary PCT
during the PCT-led family meeting.
Dr. King’s Theory of Goal Attainment was utilized as the overarching theoretical
framework for this research. Theory of Goal Attainment provided the structure,
influenced the process, and evaluated the outcomes of the PCT-led family meetings
where nurses, physicians, and others discuss goals of care at end-of-life with surrogate
medical decision-makers of the patients of interest. Following the PCT-led family
meeting, the goals attained (decision for care pathway at end-of-life; either restorative
care or comfort care) were the outcomes of the intervention (PCT-led family meeting).
Effective care can lead to enhancement of quality of life for patients and their families
who are “coping with complex human-environment experiences” (King, 1994, p. 32).
Summary
The literature presents abundant data describing variables which appear to
contribute to end-of-life disparities for African Americans. These variables are
48


multifactorial, and can be unique to those involved. They include personal and cultural
values, family connectedness, burden, spirituality, mistrust of the health care system,
health literacy, self-determination, lack of concordant health care practitioners, self-care
practices, where to die, economic factors, and ineffective communication with their
health care providers. While the literature lists many factors which tend to influence the
end-of-life decisions for goals of care of African Americans and their medical surrogates,
effective communication is one factor in particular which PCTs have expertise and could
provide to the population of interest, when considering end-of-life decision-making. The
goal of PCTs is to provide sincere, honest and accurate communication regarding the
health status of an incapacitated patient to surrogate medical decision-makers, so that all
end-of-life goals of care options and decisions may be appreciated and considered.
Effectively conducted PCT-led family meetings (which provide sincere and honest
information regarding the health status of a loved one) could address the barriers to
communication and ultimately, decisions for quality care at end-of-life (Fineberg, 2005;
Hudson et al., 2008; Mack et al., 2010; Welsh et al., 2005; Winston, Leshner, Kramer, &
Allen, 2005). There is however, paucity in the literature as to whether PCTs effectively
conduct end-of-life conversations with African American patients (when capable) and
their families (Hudson et al., 2008; Mack et al., 2010) and therefore these researchers
provide a scientific examination of this phenomenon.
King’s conceptual framework and Theory of Goal Attainment are based in the
philosophy of humans interacting with their environment over time and in any culture
(King, 1994). Measuring goal attainment can determine the effectiveness and quality of
care, which in turn, can lead to quality improvement in health care, and so enhance
49


quality of life for the stakeholders involved (King, 1994). This theory and its framework
are timeless, not bound to any culture, and could be used universally to provide structure
and process, and influence outcomes in nursing and health care into the future (King,
1994).
The purpose of the PCT-led family meeting is to provide clear communication of
medical information to those who are being called upon to make end-of-life medical
decisions for another who is incapable of making these decisions for herself/himself. The
overarching goal of these family meetings is to foster a type of decision-making known
as substituted judgment (Billings, 2011b; Orr, 2004; Shalowitz et al., 2006; Silveira et al.,
2010; Van Eechoud et al., 2014; Winston et al., 2005). That is, the decisions made by
medical surrogates must uphold the preferences the incapacitated individual would have
chosen for herself/himself, had she/he been able to do so (Billings, 2011b; Orr, 2004;
Shalowitz et al., 2006; Silveira et al., 2010; Van Eechoud et al., 2014; Winston et al.,
2005). Examining the resulting decisions made by the surrogate medical decision-makers
following PCT-led family meetings for hospitalized, incapacitated, senior, African
American patients could provide evidence regarding whether the PCT-led family meeting
impacts the decision-makers’ choices for the end-of-life pathway of care in order to
achieve the goals which would best benefit the patient. Addressing the surrogate medical
decision-makers’ concerns and apprehensions with sincere and honest communication,
with compassion, respect, and with understanding, could not only cultivate decisions
made on behalf of the patients of interest by their medical surrogates, but could go far to
dispel the myths and biases this population has historically endured. Care providers who
establish relationships with medical surrogates which are based in trust, truth, and
50


honesty could potentially reduce health care disparities and promote improved access to
efficient, effective, safe, dignified, comforting, and satisfactory treatment for African
Americans during their final stages of the life cycle (Winston et al., 2005).
The belief that PCT-led family meetings provide medical surrogate
decision-makers with sincere and honest information regarding the medical condition and
viable treatment options for a loved one in order to promote care decisions which are
equitable for the patient at end-of-life is a fitting one. However, there is little evidence in
the literature which speaks directly to the effectiveness of the PCT-led family meeting
with surrogate medical decision-makers of the patients of interest or whether
characteristics as the existence of an AD as a LW and DPOA, the age of the patient, the
medical surrogate’s gender, or kinship to the patient impacts decisions made for end-of-
life care of another. Additionally, organizations must appreciate whether PCT-led family
meetings, which include the expertise of an interdisciplinary team of skilled health care
professionals who spend many hours conducting these meetings over the course of each
week, is an efficient use of their resources. The evidence as to whether PCT-led family
meetings are even impactful for surrogate medical decision-makers of the patients of
interest is be imperative, as organizations restructure their service lines to comply with
the Affordable Care Act regulations as they evolve. It is important to offer services to
patients, families and surrogate medical decision-makers which effectively and efficiently
address and satisfy their needs. This researcher retrospectively evaluated the EMRs of
identified hospitalized, incapacitated, senior African Americans with life limiting
illnesses, whose medical surrogate decision-makers had participated in a PCT-led family
meeting to discuss end-of-life care goals. Various characteristics of the patient, the
51


decision-maker, the existence of an AD as a LW and DPOA were correlated with the
end-of-life goals of care decisions made on the patient’s behalf. The methodology of
which will be discussed in Chapter 3.
















52


CHAPTER 3: RESEARCH DESIGN AND METHODOLOGY
A retrospective chart review was used to examine the effects PCT-led family
meetings had on the surrogate decision-making for goals of care pathway for the patients
of interest. Imogene King’s Theory of Goal Attainment, which focuses on structure,
processes, and outcomes, was used to provide the framework for this study.
Retrospective data was used to examine the relationship between the outcome (pathway
for care decision: either restorative focused care or comfort focused care) and the
intervention (PCT-led family meeting experience) in this pilot study. Additionally, this
study examined the availability of ADs as a LW and DPOA in the EMRs of this
population of inquiry and whether the surrogate medical decision-maker upheld the
wishes stated therein following the PCT-led family meeting. Finally, the study examined
how selected characteristics such as patient age, surrogate medical decision-maker gender
and kinship to the patient influenced decisions made for the end-of-life pathway of care.
The retrospective chart review methodology was used for data collection and analysis.
The research design, methodology, ethical considerations, sample selection, data
collection and management, analysis and evaluation are described below.
Study Design
A retrospective chart review study design was used to collect the data. Outcome
decisions for care pathway which were recorded in the EMRs of hospitalized,
incapacitated, senior, African Americans diagnosed with life-limiting illnesses, as made
by medical surrogates following a PCT-led family meeting, were analyzed and correlated
with variables also found in the patient’s retrospective EMR.
53


study sample characteristics. There is a dearth of information in the literature
which correlated variables as presence of an AD, the patient’s age, the surrogate medical
decision-maker gender, and kinship to the patient, with end-of-life pathway of care
medical decisions. Therefore this researcher examined these variables and whether there
was some relationship to the goals of care decision made by the medical surrogates of the
population of interest. Kinship is defined as the patient’s: wife, husband, adult daughter,
adult son, mother, father, adult sister, adult brother, adult granddaughter, adult grandson,
adult niece, adult nephew, or adult female or adult male friend.
A systematic, manual collection of retrospective data from patient EMRs, in a
convenience sample of 105 medical records representing all the PCT-led family meetings
held from April 1, 2013 – March 31, 2014, for this patient population who met the
inclusion criteria, was utilized for data extraction. This PCT team provided 990 PCT-led
family meetings during the described time frame, of which 10.6% were on the behalf of
African American patients. A correlational study design allowed the examination of
possible associations between an exposure and an outcome (Jacobsen, 2012). During the
study timeframe, the palliative care program distributed the FAMCARE-2 family
satisfaction survey to 30% of their PCT-led family meeting decision-makers (see
Appendix F) following their PCT-led family meeting experiences. This palliative care
program received a 42.5% return rate on their distributed satisfaction surveys, and 94.1%
expressed a satisfied/very satisfied ranking with the PCT-led family meeting experience.
Based on these findings, this researcher is confident that the surrogate medical decision-
makers who participated in PCT-led family meetings at the organization of interest
during the described time period were satisfied with their experiences. However, this
54


researcher is interested in examining if these PCT-led family meetings held on behalf of
the patients of interest had an impact on the decisions made for goals of care pathway by
their medical surrogates. Outcome decisions made following the PCT-led family meeting
were also correlated with particular characteristics of the patient and medical surrogate
decision-makers (Terry, 2012).
Sample Selection and Setting
Through a retrospective chart review, this researcher examined the recorded
decisions that surrogate medical decision-makers made for the patients of interest.
sample. Approximately 10% of the PCT-led family meetings at this particular
institution were conducted on behalf of these patients during the specified time period.
This researcher examined the EMRs of all 105 patient cases between April 1, 2013 and
March 31, 2014, where the inclusion criteria were met.
setting. The PCT involved in this study provided 990 family meetings at
Abington Memorial Hospital (AMH) during this stated time frame. AMH is a 665 bed
not for profit, regional referral center and teaching institution located in suburban
Philadelphia, Pennsylvania. AMH is part of the Abington Health (AH) system which
includes two inpatient hospitals, a home care agency, multiple physician practices, a
nursing school, and a free standing inpatient hospice unit. AMH is a level II trauma
center and employs 5377 physicians, residents, employees. It is also supported by 884
volunteers from the community. AH serves the residents of Montgomery, Bucks, and
Philadelphia counties in Pennsylvania and treats 391,380 patients annually. The ethnic
mix of this patient population is: 80% Caucasian, 8% African American, 3.7 % Hispanic,
6.4% Asian and Pacific Islander and 1.8% other. AMH was the 84
th
organization in the
55


US to receive the prestigious Magnet designation in 2008 and re-designation in 2013.
Additionally, AMH has been awarded Advanced Certification for Palliative Care by The
Joint Commission and was the first to do so in the state of Pennsylvania in 2012, with re-
designation awarded in spring of 2014. To the credit of the administration of AH, in
response to an identified knowledge deficit, all employees participate in a two day
diversity program during their hospital orientation period.
sampling strategy. The study data were retrieved from a review of a
convenience sample of retrospective EMRs of the patients of interest whose surrogate
medical decision-makers attended PCT-led family meetings at Abington Memorial
Hospital. This researcher examined the family meeting schedules which were stored in
the Palliative Care Office database in order to determine the race and age of the patient.
The names of senior, African American patients were removed from these schedules, and
their retrospective EMRs were examined to determine whether the inclusion criteria were
met. Only the EMRs of those patients of interest whose surrogate decision-makers
participated in a PCT-led family meeting to discuss goals of care pathway was considered
for inclusion in this study.
inclusion criteria. Only those retrospective EMRs representing hospitalized,
African Americans, age 60 and older, identified as incapacitated and diagnosed with life
limiting illnesses by their attending physician, and who received a PCT consultation were
included. The age restriction selected was based on the World Health Organization’s
(WHO) 2014 post “the United Nations have agreed that age 60+ years refers to the older
population on Earth” (WHO, 2014). Also, the University of Michigan Health and
Retirement Study, a longitudinal panel study of more than 26,000 Americans over age 50
56


which explores the health transitions of older Americans every two years, recently
reported that 88.2% of its decedents were age 60 and older at the time of death
(University of Michigan, 2014). The patient must have been deemed incapacitated by
her/his primary medical team, and her/his EMR must have this determination reflected, as
defined in The Pennsylvania Code: “an incapacitated person is unable to comprehend the
potential benefits, risks and alternatives involved in a proposed healthcare decision, or
communicate medical decisions on her/his own behalf” (The Pennsylvania Code, 2011).
The PCT was consulted by the patient’s attending medical team to discuss decisions for
goals of care pathway at end-of-life (either restorative care or comfort care) as described
in the original physician order for consultation, which was be discovered under the
ORDERS tab of Sunrise Acute Care EMR system. The surrogate medical decision-
maker was acquainted with the patient and agreed to participate and attended a PCT-led
family meeting; either in person or by telephone conference call.
exclusion criteria. The patients’ retrospective EMRs were not included for
review if the patient had not been a hospitalized in-patient, not identified as African
American, were under age 60, not have a life limiting medical diagnosis, or regarded to
have capacity to make her/his own end-of-life goals of care pathway decisions. Patients
whose EMRs indicated that their medical surrogates were court appointed guardians (and
unfamiliar with the patient on a personal level) were excluded from the study. Likewise,
the patients whose EMRs listed medical surrogates who refused to attend or participate in
the PCT-led family meeting were not considered eligible for inclusion in this study.


57


Human Subject Research Considerations
Clinical researchers, interested in providing knowledge to meet the needs of
society, must not minimize the need to respect, value, and protect individuals
participating in research efforts (National Bioethics Advisory Commission, 2001).
Researchers are obligated to design scientifically credible research which is part of
approved protocols, where safety is a priority, where risks are balanced by the benefits,
and where confidentiality is protected and upheld; because defending participants’
privacy is essential in eliciting their cooperation and commitment so that human science
may advance (National Bioethics Advisory Commission, 2001).
institutional approval. Prior to submitting for Institutional Review Board
approval, this researcher explained the purpose of the study to the PCT Medical Director
and Nurse Director at Abington Memorial Hospital, in an effort to secure their support
and permission to utilize and review the documentation of the PCT as well as the
retrospective EMRs of the patients with whom they conducted PCT family meetings.
Along with their support, and the approval of this research study by the researchers’
Dissertation Committee, institutional approval was obtained from the Internal Review
Boards of Abington Memorial Hospital and Drexel University.
informed consent. Surrogate medical decision-makers were not be required to
give consent for inclusion in this study, as the data was collected through a retrospective
chart review, evaluating routine care, administered via the existing policies and
procedures, as defined by the PCT at Abington Memorial Hospital.
risks and benefits. Researchers must protect research participants from
unnecessary harm, and should not subject participants to risks which outweigh the
58


benefits (National Bioethics Advisory Committee, 2001). This retrospective research
work evaluated the EMRs of the patients of interest where end-of-life care pathway
decisions were made on their behalf by surrogate medical decision-makers and exposed
the participants to minimal risk.
Documented decision outcomes made by surrogate medical decision-makers
following their participation in the organization’s standard PCT-led family meeting were
located in Sunrise Acute Care EMR system and evaluated. The data were extracted from
patients’ EMRs via retrospective chart review methodology. There was no interaction
between the researcher and medical surrogate decision-makers or the patients of interest.
The PCT-led family meeting experience took place using the PCT’s standard meeting
procedure and format (see Appendix I).
privacy and confidentiality. Concerns regarding privacy of the patients, medical
surrogates, and personal information were given highest priority during the study
procedure to uphold the organization’s Patient Information – access, uses and disclosures
of patient health information policy (Abington Memorial Hospital, 2013). “Privacy is the
control over the sharing with others, and confidentiality is an extension of privacy, where
one’s identifiable information is protected” (University of California Irvine, 2011). To
protect participant privacy, the researcher referred to the patient cases by an assigned
study code number only. Names and other identifiers were removed, and data were
stored in a locked desk drawer in a locked office suite. Study code numbers were used
for data collection and data management purposes only. These study code numbers
remained confidential.
59


data protection. The extracted chart data was secured in the researcher’s
password protected computer, which was kept in a locked desk drawer in a locked office
suite when not in use and only accessible to the researcher. To protect the subjects’
privacy and confidentiality, these data will be destroyed after seven years.
researcher integrity. The researcher, a PCT member who has participated as a
clinician during PCT-led family meetings, separated her role as clinician and researcher.
She refrained from reviewing patient cases where she was a PCT-led family meeting
participant in order to reduce the potential for study result bias.
Data Collection and Management
collecting data. Data were collected from the documentation in the patient’s
EMR and the pre and post PCT-led family meeting decisions for end-of-life goals of care
made by surrogate medical decision-makers for the patients of interest. These
documented decisions were for either: an aggressive, restorative, cure focused care
pathway, or a comfort, quality of life focused care pathway. When medical surrogates
were unable to render a decision (for either restorative focused care or comfort focused
care), the care pathway decisions reverted to a restorative, cure focused one (see Figure
4), with or without the addition of some palliative care.
This researcher was unable to locate a single tool in the literature which captured
the entirety of the information required to address the complexity of this human
phenomenon. Thus, a data collection sheet (see Appendix J) was created and used to
capture the data of interest via the retrospective chart review methodology. Pre and post
family meeting decisions for care pathway were determined and documented.
Additionally, the retrospective chart review was used to extract and log information
60


including the patient’s age, the gender and the kinship of the patient’s surrogate medical
decision-maker. Finally, the existence of the patient’s AD was determined; and if
available, whether or not the decision made by the patient’s medical surrogate was to
uphold the patient’s wishes as outlined on the existing AD document, as previously
endorsed by the patient.
sampling prerequisites. A retrospective chart review using the EMRs of patient
cases which meet the inclusion criteria listed above was performed. Data were reviewed
for all the family meetings scheduled from the file folder dated April 1, 2013 through
March 31, 2014, and it was determined which of these listed meetings were conducted on
behalf of these African American patients who met the inclusion criteria. Evaluating all
the African American cases which qualified during the stated time frame strengthened the
validity and reliability of the study results. Patient EMRs were only reviewed for those
cases where PCT-led family meetings with surrogate medical decision-makers for the
patients of interest had taken place and the medical surrogate’s decision for end-of-life
care pathway for another was determined. The PCT-led family meeting took place per
usual process (see Figure 4) following a request for PCT consultation by the patient’s
primary medical team who had diagnosed their patient with a life limiting illness, and
deemed her/him incapacitated and unable to make medical decisions. Once the need for
the PCT-led family meeting was determined and arranged, the hour long family meeting
with the surrogate medical decision-maker took place using the SPIKE communicating
bad news format as described in chapter one (Kaplan, 2010), and the Medical College of
Wisconsin’s Family Goal Setting Meeting procedure (2010) (see Appendix I) as standard
procedure. Following the PCT-led family meeting, the surrogate medical decision-maker
61


expressed her/his decision for goals of care pathway (either restorative focused care or
comfort focused care) for the patient. The PCT meeting facilitator recorded the decision
in the patient’s EMR.
data collection process. During the retrospective chart review, a data collection
sheet (see Appendix J) was used to collect the raw data. A study code number was
assigned to the case and the patient’s name was removed to protect patient privacy.
Documentation of the patient’s incapacity to make medical decisions, the identity of the
surrogate medical decision-maker (including gender and kinship to the patient), the
events of the PCT-led family meeting, as well as the pre and post meeting decisions for
care pathway was obtained in the record under the DOCUMETATION tab of Sunrise
Acute Care EMR system in the document labeled: Consult Note – Palliative Care, or
Progress Note – Palliative Care subsequent visit. Demographic characteristics as patient
age and race were located under the PATIENT INFORMATION tab of Sunrise Acute
Care EMR system. This researcher determined if an AD, as a LW and DPOA was
available on the chart and if present, determined what the patient’s wishes were at the
time of its completion by searching the REPORTS OF OPERATIONS tab of Sunrise
Acute Care EMR system. This information was compared to what the medical surrogate
decided for pathway of care for the patient of interest, following the PCT-led family
meeting. These data were secured in the researcher’s password protected and locked
computer for management and analysis.
managing the data. The data were recorded on the data collection sheet and
entered into a Microsoft Excel spreadsheet database (see Table 1). Each row of the data
table was a data record, and the data points were each represented in a labeled column:
62


Subject Number, Meeting held(Y/N), meeting led by (MD, DO, NP), Patient Age,
Advance Directive (Y/N), Advance Directive Decision (R/C), Surrogate Gender (M/F),
Kinship (1-14, see key), Pathway Before (R/C), Pathway After (R/C), Length of Stay
(LOS) in days, Patient Religion (1-11, see key) Medical Insurance (1-7, see key),
Documented DPOA (Y/N), and Patient Gender (M/F) (see Table 2).
The spreadsheet was printed out and examined for missing data and errors in data
entry. With the assistance of a professional statistician, the data were exported into IBM
SPSS Statistics for Windows, Version 20.0 where descriptive statistics examined central
tendencies (mean, standard deviation (SD), frequencies) and inferential statistical
methods such as Pearson Chi-Square Test, and Analysis of Variance (ANOVA) were
used to evaluate relational significance. ANOVA provides for more flexibility and is a
more robust test when the data vary. This test assesses whether the expected outcome
within the defined groups were different from each other (Jacobsen, 2012; Kinnear, &
Gray, 2011).
Data Analysis
This study collected thirteen data points from the EMRs of the patients who met
the inclusion criteria. These data points were correlated to the end-of-life care pathway
decisions (dependent variable) made by their medical surrogates (restorative focused care
or comfort focused care) following a PCT-led family meeting. The demographic
characteristics such as patient age, medical surrogate’s gender, and kinship to the patient
were collected, as well as the decision for care recorded on the patient’s own AD
(independent variable). Descriptive statistics (mean, mode, median, frequency,
distribution, range, variance, SD, and central tendencies) and inferential statistics
63


(Pearson Chi-Square Test, and ANOVA) were utilized to correlate and summarize these
data points with the goals of care decisions made by medical surrogates for the patients of
interest (see Table 3). Results at a 95% confidence interval and p < 0 .05 were
considered significant results.
Specific Aims
Specific aim #1. Identify the end-of-life decisions made by surrogate medical
decision-makers for hospitalized, incapacitated, senior, African Americans with life
limiting illnesses; either restorative, cure focused care pathway; or comfort, quality of life
focused care pathway prior to, and following participation in a PCT-led family meeting.
Descriptive statistics were examined. Central tendencies for decisions made were
determined and frequency distributions, including the average, mean, mode, median,
frequency, distribution, range, variance, and SD of the pre-PCT-led family meeting goals
of care pathway decisions and post-PCT-led family meeting goals of care pathway
decisions were examined.
Inferential statistical analysis was used to examine whether a change in decision
for pathway of care had occurred following the PCT-led family meeting intervention.
The Pearson Chi-Square Test was performed to test the significance of the relationship
between the pre-PCT-led family meeting care pathway decision and the post-PCT-led
family meeting care pathway decision. This examined whether the pre and post results
differ in a measurable way (Connor-Linton, 2010). The mean differences before and
after the PCT-led family meeting were compared to show the impact these family
meetings had on end-of-life medical decision-making.
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Specific aim #2. Compare decisions made by surrogate medical decision-
makers for end-of-life care pathway for hospitalized, incapacitated, senior, African
Americans with life limiting illnesses after participating in a PCT-led family meeting,
with what patients had dictated for their own end-of-life care using a LW.
The variables examined were: the decisions made by medical surrogates
following the PCT-led family meeting; (either restorative focused care pathway; or a
comfort focused care pathway), as compared to what the patient herself/himself dictated
for her/his end-of-life care pathway using a LW. Central tendencies were utilized to
analyze this specific aim. The Pearson Chi-Square Test was used to compare an
observed value (patient’s wishes as stated on her/his LW) with an expected value
(medical surrogate decision to uphold the patient’s decree as stated on her/his LW)
(Mamahlodi, 2006).
Specific aim #3. Examine the relationships between patient’s age, surrogate
medical decision-maker gender, and kinship to the patient, and the goals of care
decisions made by medical surrogates for hospitalized, incapacitated, senior, African
Americans with life limiting illnesses following their participation in a PCT-led family
meeting.
Demographic characteristics (patient age, medical surrogate’s gender and kinship
to the patient) were categorized, and then correlated to the decisions for end-of-life care
pathway the medical surrogates had chosen. To analyze these relationships, descriptive
statistics (central tendencies calculations) were used to examine these characteristics and
care pathway decisions made by the medical surrogates. Pearson Chi-Square Test was
used to examine medical surrogate’s decision for patient’s pathway of care, as well as
65


kinship and medical surrogate’s decision for care. For age and medical surrogate’s
decision, ANOVA was used. To correlate medical surrogate’s gender with their decision
for end-of-life goals of care, the Pearson’s Chi-Square Test was used to compare these
categorical data (Eck & Ryan, n.d.). ANOVA was used to analyze the differences
between the means of the groups of interests (Berenson, Levine, & Krehbiel, 2006).
Summary
A review of the retrospective EMRs of hospitalized, incapacitated, senior, African
Americans with life limiting illnesses to determine the goals of care decisions made on
their behalf by their medical surrogates were used to examine decision-making trends for
this population of interest. Study findings may be useful to nurses, physicians and others
on the interdisciplinary PCT interested in tailoring their approaches with surrogate
medical decision-makers for the patients of interest, and may influence how PCTs
conduct future PCT-led family meetings for this population of decision-makers.
The African American population is living longer than ever before in history (US
Department of Health and Human Services Administration on Aging, 2010; IOM, 2008;
US Census Bureau, 2014). Many are doing so without decision-making capacity, but
with serious, chronic, life limiting conditions requiring high-tech and expensive treatment
regimens (Chai & Meier, 2011; Emanuel, 2013). These regimens may be uncomfortable,
burdensome, and even arguably futile, and they may not contribute to the quality or
longevity of life for the patient (Temel et al., 2010).
Chronically ill, incapacitated patients often times require a medical surrogate to
make their end-of-life medical care decisions on their behalf. This can be an especially
burdensome and difficult task for the medical surrogate who is unfamiliar with what the
66


patient’s wishes actually are (Roeland et al., 2014; Van Eechoud et al., 2014). PCTs can
be effective in assisting these surrogate medical decision-makers with this task by
providing sincere and honest information, taking into account the unique ethnic and
cultural concerns of this population of interest.
Both descriptive and inferential statistics were utilized to examine the data so that
decision rates of medical surrogates who participated in PCT-led family meetings for the
patients of interest can be identified. The prevalence rates of a completed AD as a LW
and DPOA in this patient population were also examined. The rates of whether the
medical surrogates upheld the wishes of patients as outlined in their AD were also
examined. Finally, socio-demographic features of the patients and their medical
surrogates were identified and correlated with their decisions for care pathway to explore
whether these characteristics can influence decisions made for end-of-life care for the
patients of interest.
While the literature strongly suggested that African Americans were more likely
to die while receiving aggressive, burdensome care than those of other races, and their
use of an AD as a LW and DPOA was limited (Braun et al., 2008; Payne et al., 2008;
Jenkins et al., 2008; Johnson et al., 2008; Muni et al., 2013), little was found in the
current literature which examined the effectiveness of PCT-led family meetings with
surrogate medical decision-makers for this patient population.
Similarly, little in the literature discussed whether certain demographic
characteristics influenced the medical surrogate’s end-of-life decision-making on behalf
of the patient population of interest. While overall, medical surrogates who had
participated in a PCT-led family meeting at AMH during the specified timeframe,
67


claimed to be satisfied/very satisfied with the PCT-led family meeting experience (as
measured using the FAMCARE-2 scale), findings from this study could be helpful to
determine whether these meetings actually effect decision-making and whether they are
an efficient use of the resources that organizations as Abington Memorial Hospital
allocate to support the daily operation of these highly skilled PCTs.
Dr. Imogene M. King’s Theory of Goal Attainment, asserts that effective care
delivery occurs when both the patient and nurse find satisfaction with the patient’s
outcome. This framework could be utilized by interdisciplinary PCTs to design family
meetings to more directly satisfy the unique needs of surrogate medical decision-makers
for these patients. Tailoring these meetings to address the unique and specific issues
which African Americans face could go far to help gain their trust in the health care
system, and so, influence the health care disparities this culture endures. Appreciating
the unique cultural beliefs and value systems of this population of inquiry while
conducting PCT-led family meetings could foster end-of-life goals of care decision-
making which would be mutually satisfying and comforting for those involved.
Effective care delivery at end-of-life could support the responsible use of precious
health care resources by health care providers as PCTs and their organizations (Chai &
Meier, 2011; Morrison, et al., 2008). Above all, effective care delivery could also lead to
enhancement of quality of life for patients at end-of-life, for their families, and for care
givers who must navigate through these complex human and environmental experiences
(King, 1994).

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CHAPTER 4: RESULTS AND FINDINGS
The results from this retrospective chart review methodology are presented in this
chapter. Following the collection of retrospective data from the EMRs of the population
of interest, the data were analyzed using IBM SPSS Statistics for Windows, Version 20.0
(Armonk, NY, IBM Corporation, 2011). Descriptive statistics including means, SD,
frequency distributions, and percentages were examined. Inferential statistics were
completed, including Pearson Chi-Square Test, and ANOVA. The level of significance
was set at 0.05.
Several relationships were examined, and included the following:
 Whether having medical surrogate decision-makers participate in a PCT-
led family meeting would alter the end-of-life goals of care pathway
decisions they made for the patient population of interest.
 Whether medical surrogate decision-makers for these patients of interest
upheld the decisions the patients themselves expressed for their end-of-
life care pathway within the context of their LW documents
 Whether demographic data including patient age, medical surrogate’s
gender, and kinship to the patient was associated with the end-of-life
goals of care decisions made by the medical surrogates for these patients
following their participation in the PCT-led family meeting.
Additional demographic data including patient religion, patient’s hospital length of stay
(LOS), medical insurance coverage, as well as credentials of the PCT-led family meeting
facilitator were also examined.

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Demographics
105 PCT-led family meetings on behalf of hospitalized, incapacitated, senior,
African American patients suffering with life limiting illnesses occurred at AMH from
April 1, 2013 through March 31, 2014. Upon reviewing the retrospective EMRs of these
cases, 91.4% (96) met the inclusion criteria as described in Chapter 3. All 96 of the
EMRs reviewed, discussed the care of this patient population of interest who required a
medical surrogate decision-maker to make pathway of care (continued restorative care, or
comfort focused care) decisions on their behalf, as they themselves were unable to
cognitively appreciate such a degree of decision-making. All of the EMRs clearly
identified the medical surrogate as well as the pathway of care decisions made by these
medical surrogates, following their participation in a PCT-led family meeting.
Of the 96 EMRs reviewed, 28% (27) were male, and 72% (72%) were female.
The mean age was 78+10.2 yrs. (see Table 4). While not a statistically significant finding
(Pearson Chi-Square; p = .66), it is worth noting that following the PCT-led family
meeting, the medical surrogates of the African American male patients changed their care
pathway to comfort focused care 51.9% of the time. For African American female
patients, their medical surrogates changed to comfort focused care pathway 36.2% of the
time (see Figure 5). Kinship refers to the relationship the medical surrogate had to the
patient (see Figure 6). The majority of the medical surrogates were the adult daughter
45.9% (45) of the patient, followed by the spouse; wife 16.7% (16) or husband 15.6%
(15).
The religious preferences for all 96 patients were available in the EMR as well.
The majority of the patients were Baptist (43.7%), followed by Christian (15.6%) (see
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Table 4). When comparing African American patients’ religious preferences with the
end-of-life care pathway decisions made by their medical surrogates following their
participation in a PCT-led family meeting, the results did not support a significant
relationship (Pearson Chi-Square Test; p = .50).
The patient’s medical insurance was also obtained from the EMR. Most patients,
63.5%1 (61) were covered by Medicare (see Table 4). Other types of insurance included,
Independence Blue Cross 10.4% (10), Keystone 7.3% (7), Aetna 7.3% (7), Medical
Assistance 3.1% (3), Other 8.3% (8). There was no statistically significant relationship
(Pearson Chi-Square Test; p = .51) found between the type of medical insurance and post
PCT-led family meeting medical surrogate decision for care pathway.
The hospital LOS in days ranged from 1 – 80 days with a mean of 17+12.6 days
(see Figure 7). The mean LOS for the 59.4% (57) of the patients whose EMRs recorded
their medical surrogate’s decision for continued restorative care pathway was 21.1 days
(SD =13.3; 95% CI = 17.6, 24.6). The mean LOS for the remaining 40.6% (39) patients,
those whose medical surrogates’ decisions were to change the care pathway to comfort
care was 10.9 days (SD = 8.6; 95% CI = 8.2, 13.7). These results were significantly
different (ANOVA; p < 0.005), suggesting a relationship between type of care,
restorative or comfort, and LOS.





71


Table 4: Demographic Characteristics of the Population Studied (N=96)
Characteristics Patient Medical Surrogate
Patient Gender
M 27 (28.1) 30 (31.3)
F 69 (71.9) 66 (68.7)
Patient Mean Age (yrs.) 78 + 10.2
60 – 75 36 (37.5)
76 – 84 26 (27.1)
85 – 96 34 (35.4)
Patient Religion
Baptist 42 (43.7)
Catholic 11 (11.5)
Christian 15 (15.6)
Jehovah Witness 10 (10.4)
Agnostic/None 6 (6.2)
Other 12 (12.5)
Length of Hospitalization (days)
1 – 7 25 (26.0)
8 – 14 25 (26.0)
15 – 21 13 (13.5)
22 – 30 23 (24.0)
31 + 10 (10.5)
Patient’s Medical Insurance
Medicare 61 (63.5)
Private Insurance 24 (15.0)
Medical Assistance 3 (3.1)
Other 8 (8.3)
Advance Directive 22 (23.0)
LW 1 (1.0)
DPOA 9 (9.4)
Both LW and DPOA 12 (12.5)
No AD 74 (77.0)


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Table 4 (continued)

Medical Surrogate’s Kinship to Patient
Wife 16 (16.7)
Husband 15 (15.6)
Adult Daughter 45 (45.9)
Adult Son 13 (13.5)
Mother 2 (2.1)
Other Relatives 5 (5.2)
Note. N = 96; DPOA = Durable Power of Attorney for Health Care Decisions; LW = Living Will; AD =
Advance Directive; Age-years; N (%) = Frequency (Percent)

Key Variables
Five key variables of interest included: care pathway decision following the PCT-
led family meeting, care pathway decision following the PCT-led family meeting as
compared to what the patients had stipulated on their LW, and care pathway decision
following the PCT-led family meeting as correlated with patient age, medical surrogate’s
gender, and kinship to the patient (see Table 5) when evaluating the null hypothesis that
there is no relationship with any of these variables and the end of life care pathway
decision made by medical surrogates for these patients of interest, despite the medical
surrogate’s participation in a PCT-led family meeting.
Prior the PCT-led family meeting, all 96 EMRs reflected patient care which was
considered to be of the restorative pathway. Following the PCT-led family meeting,
59.4% (57) of the medical surrogates opted to continue with the restorative care pathway
for the patient they were representing. Conversely, 40.6% (39) of the medical surrogates
chose to switch the care pathway for the patient they were representing to the comfort
focused pathway of care (see Figure 8). These findings were not significant (Pearson
73


Chi-Square; p = N/A since decision before was a constant), however, the trend
demonstrated is worthy of discussion.
Just 22.9% (22) of the 96 EMRs reviewed had evidence of a patient-signed
advance directive (see Appendix B, C, D, and E). Thirteen (59.1% of the advance
directive group; 13.5% of the entire sample) of the ADs included LWs which
demonstrated the patient’s own determination of end-of-life wishes for pathway of care
(either restorative or comfort care). Four (30.8% of the advance directive group; 4.2% of
the entire sample) of these LWs declared the patient’s desire for continued restorative
care, while nine (69.2% of the advance directive group; 9.3% of the entire sample) of the
LWs specified their preference for comfort focused care. Interestingly, the other nine
(40.9% of the AD group; 9.5% of the entire sample) of these AD documents simply
designated a specific individual as DPOA for health care decisions by name; tasking
those individuals to use substituted judgment decision-making to make care pathway
decisions on behalf of the patients, while giving no indication for care pathway
preferences. Further examination of the data demonstrated that 77.1% (74) of the EMRs
of the patients of interest had no evidence of any AD on the EMRs reviewed (see Figure
9).
Of the 13 cases which included signed LW documents, the medical surrogates
upheld the patient authorized decision 69.2% (9) of the times. For restorative care, the
decision was upheld in 75% (3) of the four cases following their participation in a PCT-
led family meeting. The medical surrogates upheld the patient authorized decisions for
comfort focused care 66.7% (6) of the nine cases. That is, in 30.8% (4) of the 13 cases
where the EMRs included LW documents, the medical surrogates did not endorse what
74


the patient’s LW stipulated for their care pathway at the end-of-life (see Figure 10). This
was not a significant finding (Pearson Chi-Square, p = .26), because the sample size was
small.
The recorded patient ages on the EMRs were divided into three categories: 1) 60 –
75 years where restorative care was decided by the medical surrogates for 66.7% (24) of
the cases, and comfort care was decided for 33.3% (12) of the cases; 2) 76 – 84 years
where restorative care was decided by the medical surrogates for 46.1% (12) of the cases,
and comfort care was decided for 53.8% (14) of the cases; and 3) 85 – 96 years where
restorative care was decided by the medical surrogates for 61.8% (61) of the cases, and
38.2% (13) for comfort care. For those who remained on the restorative care pathway,
the range of ages was 62 -95 years, with a mean age of 77 years (SD = 10.6; 95% CI =
74.2, 79.8). For those whose decision for care pathway was converted to comfort care by
their medical surrogates, the range of ages was 60 – 96 years, with a mean age of 80
years (SD = 9.7; 95% CI = 76.2, 82.5). These statistical findings were not significant
(ANOVA; p = .26).
The patient’s medical surrogate decision-maker was identified in the EMR.
Through this information gender was determined. For this sample, 31.25 (30) of the
medical surrogates were male and 68.7% (66) of the medical surrogates were female. Of
the males, 63.3% (19) decided for continued restorative care for the patient they were
representing, and 36.7% (11) decided for comfort care for the patient they were
representing. Of the females, 57.6% (38) decided for continued restorative care for the
patient they were representing, and 42.4% (28) decided for comfort care for the patient
75


they were representing (see Figure 12). These findings were not significant (Pearson
Chi-Square; p = .66).
The EMRs identified who the patient’s medical decision-maker was by
relationship. Wives 16.7% (16) of the total surrogates opted for restorative care 50% (8)
of the time and comfort care 50% (8) of the time. Husbands 15.6% (15) of the total
surrogates opted for restorative care 66.7% (10) of the time and comfort care 33.3% (5)
of the time. The adult daughters 45.8% (44) of the total surrogates opted for restorative
care 63.6% (28) of the time and comfort care 36.4% (16) of the time. The adult sons
13.5% (13) of the total surrogates opted for restorative care 61.5% (8) of the time and
comfort care 38.5% (5) of the time. The mothers 2.1% (2) of the total surrogates opted
for restorative care 100% of the time. Other relatives 5.2% (5) of the total surrogates
opted for restorative care 20% (1) of the time and comfort care 80% (4) of the time (see
Figure 13). These findings were not statistically significant (Pearson Chi-Square; p =
.24).











76


Table 5: Post Goals of Care Decisions Made By Medical Surrogates
Following The PCT-led Family Meeting

_______________________________________________________________________
Key Variable Restorative Comfort Statistical Analysis
N = 96 CARE CARE p value
_______________________________________________________________________________
Decision Prior
to FM 96(100) 0(0.0)

Decision Following
FM 57 (59.4) 39 (40.6) N/A
1

Patients without AD 51 (61.4) 32 (38.5)
Patients with AD 6 (46.2) 7 (53.8) .37
1



Patient’s Decision
on LW (N=13) 4 (30.8) 9 (69.2)
Surrogate’s Decision
Following PCT-led
FM with LW Guidance 6 (46.2) 7 (53.8) .26
1
.

Patient’s Age 57 (77 + 10.6) 39 (79.4 + 9.6)
95% CI (74.18, 79.82) (76.25, 82.52) .27
2

Surrogate’s
Gender/Decision
M 19 (63.3) 11 (36.7)
F 38 (57.6) 28 (42.4) .66
1

Kinship to
Patient/Decision
Wife 8 (50.0) 8 (50.0)
Husband 10 (66.7) 5 (33.3)
Adult Daughter 28 (63.6) 16 (36.4)
Adult Son 8 (61.5) 5 (38.5)
Mother 2 (100) 0 (0.00)
Other Relatives 1 (20.0) 4 (80.0) .24
1


________________________________________________________________________
Note. N = 96; PCT = Palliative Care Team; FM =Family Meeting; LW = Living Will;
AD=Advance Directive; N (%) = Frequency (Percent). Significance level set at p < 0.05.
1
Pearson
Chi-Square Analysis,
2
Analysis of Variance



77


Incidental Variable
This study reviewed the outcomes of 96 PCT-led family meetings. Of these
meetings, 53 (55.2%) were led by the PCT physician and 43 (44.8%) were led by the
PCT nurse practitioner (see Table 6). By reviewing the care pathway decisions of the
patients’ medical surrogates following their family meetings, it was noted that the
physicians obtained a continued restorative care pathway decision 35 (66.0%) times, and
a transition to comfort focused care pathway 18 (34%) of the times. Nurse practitioners’
meetings yielded restorative care pathway decisions following their family meetings 22
(51.2%) of the time, and comfort focused care pathway decision 21 (48.8%) of the time
(Pearson Chi-Square Test; p = .33) this is not significant.
Statistical Significance
Cross tabulations and significance testing were performed on the data extracted
from the EMRs of the identified population of interest to determine whether relationships
between the variables existed. Statistical significance was set at 0.05. The sample size of
this pilot study was small, and only one relationship demonstrated significance. While
not a key variable, the relationship between LOS and decision for care pathway was
significant p = .0005. The range for LOS for those whose care pathway decision was to
remain on the restorative path was 3 -80 days, the mean was 21.1 days (SD = 13.3; 95%
CI = 17.6, 24.6). For those whose decision was to transition to comfort care, the LOS
ranged was from 1 – 29 days, the mean was 10.95 days (SD of 8.6; 95% CI = 8.2, 13.7).
All other variables showed trends regarding medical surrogate decision making,
however, none of the examined relationships were statistically significant. A full
78


discussion and evaluation of these trends, the need for further study in this area of health
care, and implications for medical and nursing practice will be discussed in chapter 5.


Table 6: Incidental Variables Noted Related to Post Goals of Care Decisions of
Medical Surrogates Following the PCT-led Family Meeting
______________________________________________________________________________________
Variable Restorative Comfort Statistical Analysis
N = 96 Care Care p value

LOS
Range 1-80 21.1 + 13.3 10.9 + 8.6 <.0005
2

Clinician FM Facilitator
Physician 35 (66.0) 18 (34.0)
Nurse Practitioner 22 (51.1) 21 (48.8) .33
1

PCT=Palliative Care Team; LOS-Length of hospital stay in days; FM=Family meeting; N (%) = Frequency
(%); Significance is set at p < 0.05;
1
Pearson Chi-Square Analysis;
2
Analysis of Variance












79


CHAPTER 5: DISCUSSION
This study examined the following Specific Aims:
1. Identify the end-of-life decisions made by surrogate medical decision-makers
for hospitalized, incapacitated, senior, African Americans with life limiting
illnesses; either restorative, cure focused care pathway; or comfort, quality of
life focused care pathway prior to, and following the participation in a PCT-
led family meeting.
2. Compare decisions made by surrogate medical decision-makers for end-of-
life care pathway for hospitalized, incapacitated, senior, African Americans
with life limiting illnesses after participating in a PCT-led family meeting,
with what patients had dictated for their own end-of-life care using a LW
3. Examine the relationships between patient’s age, surrogate medical decision-
maker gender, and kinship to the patient, and the goals of care decisions
made by medical surrogates for hospitalized, incapacitated, senior, African
Americans with life limiting illnesses.
Findings from the EMRs of this small, retrospective pilot study describe the pre
and post goals of care pathway decisions of medical surrogates for the patients of interest.
The literature discussed multiple characteristics which influence end-of-life decision-
making, traits and attributes unique to the African American population, and historical
developments which have most certainly influenced the studied population. However,
there was little evidence available in the existing literature regarding whether the PCT-led
family meeting influenced the decision-making of the medical surrogates of this patient
population. This work presents a foundational measure, and Dr. King’s Theory of Goal
80


Attainment was applied as the overarching framework, used to achieve some
understanding of whether the PCT-led family meeting has an influence on the medical
surrogate decision-makers, or on the decisions they make at such a critical time in the
lives of those they are called to represent. Few of the findings revealed results which
were statistically significant. However, multiple trends were uncovered which are
worthy of some discussion and further study.
All 96 of the EMRs reviewed described patients who overwhelmingly reported
being Christians; Baptists in particular, and all had some form of medical insurance
coverage, mainly Medicare, which is likely, an indication of the age group being studied.
Their EMRs stated that these patients were receiving restorative medical care which was
of a curative nature; that is, they were being aggressively treated for their chronic, life
limiting conditions with the hopes of making some meaningful recovery. Identified by
their primary health teams as mentally incapacitated, and potentially able to benefit from
a PCT-led family meeting to discuss which treatment pathways were available, the
patients’ medical surrogate decision-makers were invited by the PCT to meet, discuss,
and consider care pathways which were alternatives to the curative, restorative route that
was being provided, but not producing efficacious results for these patients. These
meetings were conducted in a private setting and facilitated by seasoned and well trained
PCT physicians or nurse practitioners, with a mean of 12 years of hospice/palliative care
experience. They all used an agreed upon communication format and scripting (Billings,
2011b).

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Pre/Post PCT-led Family Meeting Decision for Pathway of Care
The meeting results in this study were documented in the patient’s EMR and
examined by the researcher. Following the PCT-led family meetings of this population,
60% of the medical surrogate decision-makers preferred to continue on the restorative
care pathway. The literature holds an abundant amount of information regarding end-of-
life decision-making influences within the African American culture. Factors as previous
relationship with the patient fear that death itself may be imminent, anticipatory grief,
religious beliefs and influences, previous experiences with death and dying, mistrust in
the health care system and the care providers, the burden of having such a life-altering
conversation of life-and-death issues. Other issues include, having to participate in such
weighty decision-making itself, insufficient information regarding the patient’s medical
condition, lack of knowledge regarding the patient’s own preferences for care, long
standing family dynamics and guilt that they may be contributing to the patient’s demise
are some of the many concerns which must be appreciated by care providers as they look
to medical surrogates for direction (Billings, 2011a; Billings, 2011b; Braun et al., 2008;
Candib, 2002; Johnson et al., 2008; Kennard, 2015; Roeland et al., 2014; Sharp, Carr, &
Macdonald, 2012; Van Eechoud et al., 2014; Volandes et al., 2008).
Due to the small sample size of this pilot study, the findings do not lend
themselves to be statistically significant, but they do suggest a trend which is worth
recognizing. The findings do not support the null hypothesis that a PCT-led family
meeting does not change the end-of-life care pathway decisions of the participating
medical surrogate decision-makers for these African American patients. Unexpectedly,
this work discovered that in 40% of the cases, the medical surrogates changed the goals
82


of care for this patient population from restorative care to the comfort focused pathway,
following their PCT-led family meeting experience. Given the many cultural influences
which can influence end-of-life decision-making, the researcher found this result to be
remarkable. This finding should give PCTs confidence that their efforts can empower
medical surrogates as they make goals of care decisions for others; and ultimately impact
the quality and comfort of the precious living and dying process of these patients. This
noted trend suggests that, unlike what has been described in the past literature, comfort
focused care may be considered as a viable option for this patient population, by their
medical surrogate decision-makers. Perhaps providing medical surrogates the
opportunity (as during the PCT-led family meeting) to sincerely and honestly discuss
how significant these incapacitated seniors are to them, to encourage them to discuss who
the patient is as a person, as a family member, as a spiritual being, as a friend, as a
contributor to society, and not limit the conversation to medical terminology and
prognostication, could support the medical surrogates in making decisions for others
which are congruent with who they truly are and what they deserve at this precious time
in one’s life (Boyd, et al., 2010; Fosler et al., 2015; Zaide et al., 2013). Like Zaide and
colleagues (2013), this researcher speculates whether a follow-up PCT-led family
meeting would further alter the goals of care decisions of medical surrogates who are
unable to change their decisions for goals of care pathway following the original PCT-led
family meeting, and will give this consideration for future study. This PCT approach to
goals of care planning with medical surrogates, if utilized more frequently in this
population, could reduce the health care disparities that African Americans have
83


historically endured regarding aggressive but ineffective and burdensome treatment at
end-of-life.
Advance Directives and Surrogate Medical Decision-Making
The evidence also offers many examples of the cultural beliefs and values of
African Americans regarding end-of-life care, treatment choices, and the use of ADs.
When compared to other cultures, African Americans have been less likely to participate
in advance care planning, whether by a LW or DPOA for health care (Born et al., 2004;
Braun et al., 2008; Givens et al., 2010; Jenkins, 2005: Johnson et al., 2008; Liao et al.,
2011; Muni et al., 2011; Payne et al., 2008; Reynolds et al., 2008; Smith et al., 2008;
Taxis, 2006).
The results of this study restate these earlier findings. Three quarters of this
patient sample had no evidence of an AD in the EMRs. Just 13.5% of this patient
sample’s EMRs held LWs which stated their preferred goals of care pathway choices for
end-of-life care. The remainder of the EMRs with ADs simply named an individual who
should be called upon as a DPOA to make the end-of-life care pathway determination,
should it be necessary. African Americans value family connectedness, and prefer oral
communication to written documents (Friedman et al., 2009; Welch et al., 2005), and this
low completion rate of LWs may be a reflection of this. Additionally, ongoing mistrust
of the health care system to properly uphold the patient’s stated goals of care decision
may impel African Americans to prefer the designation of a “protector” to oversee their
end-of-life process in real time, rather than prematurely making end-of-life care decisions
without knowing the context (Candib, 2002; Johnson et al., 2008; Mazanec et al., 2010;
Volandes et al., 2008). Of the small number of cases with available LW documents in
84


the EMRs, two thirds authorized comfort focused care to be provided at end-of-life.
Following the PCT-led family meetings held on behalf of individuals with LWs in their
EMRs, the majority 9 of 13 (69%) of medical surrogates did uphold the patient’s end-of-
life goals of care preferences. This supports the hypothesis that while few of the EMRs
reviewed had a LW attached, of those that did; the majority was upheld by the patients’
medical surrogates following their participation in a PCT-led family meeting. These
finding, while not statistically significant, support the trend in the literature which
suggests that LWs impact decisions made by medical surrogates at end-of-life (Shalowitz
et al., 2006; Silveira et al., 2010).
Interestingly, one third of the medical surrogates in this study who represented
patients with LWs in their EMRs could not uphold what their patient had authorized in
his/her LW document. This study was not designed to evaluate the reasons why a
medical surrogate would violate another’s right to self-determination, and should be the
topic of a future study. Such knowledge may assist PCTs in designing education sessions
for the medical surrogates they meet with. It is important to emphasize that the
responsibility they have been called to carry out promotes the use of substituted judgment
in order to preserve the autonomy of the patient to the fullest extent possible; this
includes honoring one’s wishes for end-of life care as they had indicated in their LWs
(Lynch, Mathes, & Sawicki, 2008). Likewise, health care providers, attorneys and others
who are involved in AD preparation and facilitation must insist that those completing
ADs make their wishes known verbally to those who may be called to represent their
medical interests in the future, as well as others who may be available to support the
medical surrogate in the decision-making process, when end-of-life is near. Studies have
85


shown that ADs are more easily upheld by medical surrogates when they have been made
aware of the patients’ wishes for end-of-life care by the patients themselves before
becoming incapacitated (Barrio-Cantalejo et al., 2009; McMahan, Knight, Fried, &
Sudore, 2013; Pope, 2012; Silveira et al., 2010; Torke et al., 2008; Van Eechoud et al.,
2014).
Demographic Influences and the Decision for Pathway of Care
patient age. The life expectancy of African Americans in the US continues to
improve (Kochanek, Arias, & Anderson, 2013). In 2010, the US Department of Health
and Human Services last reported that the average life expectancy of the African
American male was 70.8 years and for the African American female it was 77.5 years,
which is a 17% increase since 1900 (Murphy, Xu, & Kochanek, 2013). Patient age and
goals of care pathway decision was another key variable in this work. The documented
age of this study sample ranged from 60 – 96 years with a combined mean age of 79.4
years. When this sample was further divided into three categories: old (60 – 75yrs), older
(76 – 84yrs) and oldest (85 – 96yrs), while not significant, it was interesting to note that
the medical surrogates for the “oldest” group were as likely to decide for restorative care
as were the medical surrogates for the much younger “old” group, suggesting to the
researcher that age may not be an important factor when end-of-life decisions need to be
made to the medical surrogates of the population of interest. As noted throughout this
work, African Americans value family connectedness, so it is logical to presume that this
culture cherishes their elderly. These oldest of the old group are the community’s
‘survivors’. These seniors provide the bedrock of the African American cultural
heritage, and identity in this world, and so they appreciate that the company of their
86


elders (no matter the age) is essential for family unity (Candib, 2002; Johnson et al.,
2008; McCoy, 2011).
gender. Another key variable which was easily noted in the EMRs was gender.
This study sample included an overwhelming number of female patients (72%). As noted
above, there is a seven year increased life expectancy for African American females
(Murphy et al., 2013); however it could be argued that this is an odd finding as this
sample encompassed multiple ages over a 36 year time span. Similar to findings with
end-of-life ICU patients published by Lissauer and colleagues in 2011, when decision for
care pathway following the PCT-led family meeting was correlated to the gender of the
patient, medical surrogates were equally interested in restorative care as they were with
comfort focused care for the male patients they were representing (Lissauer, Smitz-
Naranjo, & Johnson, 2011). Conversely, when medical surrogates in this study were
making medical decisions on behalf of female patients, they were almost twice as likely
to decide to continue restorative care as they were to change the course of treatment to
comfort focused care. These findings could generate an interesting discussion regarding
the demographics of the community served by AH, and also the characteristics of the
populations which suffer from chronic, life limiting conditions among African
Americans. Possibly, this population included so many more females, because their
decision-makers prefer to maintain the restorative care pathway more often for them than
their male counterparts.
kinship. Also a key variable in this study was the gender of the medical surrogate
decision-maker. Females were more than twice as likely to find themselves in the
medical surrogate role as males. Perhaps this is due to customary gender role casting of
87


females as “care-takers” in society (Crawford, Meana, Stewart, & Cheung, 2000;
Mutchler, 2003), or that since the 1980s, African American women head more than 40%
of their households and have no choice but to shoulder life’s burdens for their families
(Malveaux, 2008). However, when the post PCT-led family meeting decision for
pathway of care results were examined, males and females made similar decisions for
pathway of care for this population of interest that they were called to represent. While
not a significant finding in this study, this observation is supported in the literature, when
ethical decision-making outcomes have been examined between genders in the general
population (Crawford et al., 2000; Zhang & Zhang, 2014). Studies have shown that
women can have an approach to ethical decision-making which differs from their male
counterparts, and use techniques as information gathering, opinion-seeking, and taking
pause (Heitler, 2012; Kapral, 2006). Men conversely, believe they are being asked to
provide a plan, and tend to make decisions more immediately (Heitler, 2012; Kapral,
2006). Nevertheless, and noted above, the final decision outcomes tend to be similar
between the genders (Heitler, 2012; Kapral, 2006).
Along with medical surrogate gender, this study sought to discover whether
kinship to the patient, another key variable, influenced the goals of care decisions made
by medical surrogates following their participation in a PCT-led family meeting. Not
surprising to this researcher, the majority of the medical surrogates were either spouses or
adult children. Wives and husbands had equal representation as decision makers, and
adult sons held the decision-making responsibility the least amount of the time. It was
the adult daughters who were identified as the medical surrogates in almost half of all the
cases reviewed. The sample size of this study was too small to provide statistical
88


significance; however, as in the gender discussion above, it is often the adult female in
contemporary African American society who must bear the burden of family obligations
(Malveaux, 2008). When the goals of care decisions following the PCT-led family
meeting with kinship were compared, the trends suggested that while wives were evenly
split in their decisions for restorative and comfort focused care for their spouses,
husbands elected for restorative care for their wives two thirds of the time. Some may
argue that husbands may be more reliant on their wives for day to day survival, and so the
notion of losing them may be less acceptable for them. Incidentally, Zettel-Watson and
colleagues studied older adults and their surrogate decision-makers and found that
spouses were more accurate in appreciating the end-of-life wishes of each other than
other family members were, and that husbands had more confidence in their spouses’
accuracy for making end-of-life decisions which were congruent with their own wishes
than wives did of their husbands (Zettel-Watson, Ditto, Danks, & Smucker, 2008). The
adult sons and daughters in this study elected for restorative care with equal frequency.
Of note, there were two mothers who were tasked with making goals of care decisions for
their adult children. Both elected for full restorative care for their child. This response
could have been a manifestation of the protective maternal instinct at work (Graham,
2004). This observation could benefit from further investigation. Such knowledge could
assist PCTs in children’s hospitals, for example, as they have meetings with the parents
of critically ill children. The balance of the sample had medical surrogates which were
more distantly related. These medical surrogates decided for comfort focused care most
of the time. Perhaps this suggests that decision-makers have more objectivity when they
are not as emotionally connected as spouses, children, and mothers are to these patients
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of interest (Van Eechoud et al., 2014). These trends are not dissimilar to those found in
the gender discussion above. In this pilot study, there does not appear to be a remarkable
difference in the goals of care decisions made by medical surrogates as influenced by
their gender or their kinship to the patient.
Medical surrogates and families play an important part in the end-of-life goals of
care decision making process. PCTs and other health care providers must be sensitive to
both the practical as well as the emotional factors which surface during these sensitive
conversations with the patient’s loved ones, and understand that such stressful times can
cause families disagreement and conflict. When family conflict is present, the quality
and accuracy of medical surrogate decision-making may be compromised (Parks et al.,
2011). PCTs should investigate the particular concerns of the medical surrogate and
other family members, so that their PCT-led family meetings can be tailored to address
the specific concerns of the medical surrogate and family situations, with the goal of
ultimately providing the patients with the care that is most befitting of them.
Length of Hospital Stay Based on Decision for Pathway of Care
The one finding in this study that proved to be statistically significant was the post
PCT-led family meeting decision of medical surrogates for the population of interest and
LOS in the hospital. The mean LOS for the patients whose medical surrogates decided to
pursue the comfort focused pathway of care following the PCT-led family meeting was
decreased by half. This freed up acute care hospital beds for others, as these patients
likely transferred to home, or other home-like setting as a nursing home or hospice, rather
than remaining in the acute care hospital setting where their medical surrogates did not
wish them to be. This finding augments the work of Morrison and colleagues who
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maintain, after reviewing the expenditures of multiple acute care organizations, that
having palliative care involved in the care of patients with life-limiting conditions offers
care pathways which are congruent with what these patients and their families may
ultimately prefer (Morrison et al., 2008; Morrison et al.,2011). When it is decided that
the care pathway is to transition to comfort focused care, patients are saved the burden of
unwanted, unnecessary and even futile treatment which does not contribute to the quality
of the patient’s life. They are also less likely to die a burdensome death in ICU
(Khandelwal et al., 2015; Morrison et al., 2011; Norton et al., 2007). Additionally acute
care organizations are spare the expenses involved in providing this unnecessary care
(Morrison et al., 2008; Morrison et al., 2011), thus protecting precious health care
resources which can then be used to provide beneficial, necessary treatment to patients
who would benefit from such care.
Some regulatory agencies are beginning to enact mandates which require
palliative care discussions to be part of patient preparation prior to undergoing medical
procedures which implant expensive and burdensome equipment meant to sustain life. In
2012 the State of New York passed legislation requiring all patients with life limiting
illnesses to be informed of palliative care and offered such care as an alternative to
ongoing, ineffective, burdensome care; other states are exploring this mandate as well
(Caramenico, 2013). Further analysis to evaluate the relationships between care
pathways and medical expenditures, and 30 day hospital readmission rates following
palliative care involvement is deserving of future exploration as the Affordable Care Act
continues to shape accessibility to health care for all Americans.

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Family Meeting Facilitator Credentials and Theoretical Framework
Nursing theorist Imogene M. King believed that nurses help patients to interact
with their environment in a way that helps them achieve their goals (King, 1994; King,
1997) (see Figure 3). Mutual goal attainment occurs when the patient [medical surrogate]
and the nurse [clinician] interact, achieve their goals [decision for pathway of care], and
are both content with the outcome of their transaction which she considered to be
effective caring (King, 1994; King, 1999; Sieloff & Frey, 2007). The PCT-led family
meeting is held by an interdisciplinary team (Parker et al., 2013). The clinician on the
team of this particular PCT, either physician or nurse practitioner, heads the
interdisciplinary team and facilitates the family meeting process, using the team’s family
meeting format procedure (Medical College of Wisconsin, 2010). In this study, the
physicians conducted slightly more than half of the meetings where the results were
documented in the EMRs of these patients of inquiry; the nurse practitioners conducted
the remainder of the reviewed family meetings for this population. Despite the team’s
FAMCARE-2 family satisfaction survey ratings (Aoun et al., 2010) consistently scoring
‘satisfied-very satisfied’, there is periodic query as to whether PCT nurse practitioners
deliver the same family meeting product as their PCT physicians. This researcher was
interested in whether the PCT-led family meeting outcomes differed based on the
credentials of the meeting facilitator. By reviewing the family meeting documentation in
the EMRs of this patient population, it was discovered that, while not significant, the
findings make for an interesting discussion. The physician meetings resulted in a
transition to comfort focused care one third of the time, while the nurse practitioners
elicited a transition to comfort focused care in one half of the meetings they conducted.
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This study was not designed to review the caliber of the cases each of the disciplines
were assigned, but one might conjecture that the physicians on the team may have been
assigned to the meetings which may have been considered as the more difficult cases to
discuss. None the less, the results of this small pilot study support findings within the
literature (Parker et al., 2013), indicating that nurse practitioners can effectively conduct
PCT-led family meetings to determine the goals of care pathway decision of the medical
surrogates of the population of interest. Further, the feedback the PCT received from the
FAMCARE-2 family satisfaction surveys, which were completed by the medical
surrogates following their participation on a PCT-led family meeting, demonstrated
satisfaction with the family meeting. Dr. King’s Theory of Goal Attainment, a nursing
theory, describes that the perception, judgement, and action of those involved in the
caring of an individual, results in a reaction, interaction and forms the core of the
transaction (Khowaja, 2006). By applying this nursing theory to the efforts of other
health care disciplines who facilitated family meetings, it could be alleged that these
meetings provided “effective caring”, no matter the credentials of the meeting facilitator
(King, 1994; King, 1999; Sieloff & Frey, 2007) because the eventual transaction resulted
in the attainment of goals of care pathway decision for the patient suffering with life
limiting illness.
Study Limitations
Several considerations come to mind while interpreting this study data. This was
a small retrospective pilot study of 96 EMRs. The EMRs reviewed documented the care
of hospitalized, incapacitated, senior, African American patients from just one
geographic area and hospital in the northern suburbs of Philadelphia, Pennsylvania and so
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not generalizable to African American society at large. Conducting this study with a
larger sample size, and using the EMRs from multiple organizations would lend
increased reliability, validity, and generalizability of the results.
Only 13.5% of the sample had an AD attached to their EMR. This low AD
completion rate does support the findings of others which state that African Americans
do not participate in advance care planning through the use of an AD document (Born et
al., 2004; Braun et al., 2008; Givens et al., 2010; Johnson et al., 2008; Reynolds et al.,
2008; Smith et al., 2008; Taxis, 2006; Zaide et al., 2013). Thus, this low rate also limited
the amount of available data regarding patients’ care preferences at end-of-life.
The lack of information regarding the end-of-life preferences of the 86.5% of the
patients in this study without ADs also made it impossible to compare their preferences
for care at the end-of-life with what their medical surrogates’ decided for them. Such
information could speak to whether the medical surrogates for this population of African
American patients even realized what the preferences of the patients they were
representing were before making medical decisions for goals of care, and whether they
even upheld the preferences of the patient. Having this data could also give some
indication as to whether African Americans are having these end-of-life conversations
with one another. This should be studied more closely so programs could be designed to
address this gap in end-of-life care planning.
This study collected little information regarding characteristics of the medical
surrogate. Known was just gender and kinship. Having some greater understanding of
the features of the medical surrogates (age, race, education level, socio-economic status,
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religion, beliefs and values) could go far to understanding why they made the decisions
that they did for another.
Every EMR for the cases that met inclusion criteria was reviewed. The sample
included a large majority of female patients. This study should be repeated, using a more
balanced number of males and females, as these results do not sufficiently represent the
surrogate medical decisions for the African American male.
All on the PCT involved in this study were Caucasian health care providers.
Further studies of this nature could invoke the use of an African American PCT with this
study population. It would be interesting to review the goals of care decisions the
medical surrogates make following a PCT-led family meeting with a concordant PCT.
This study examined data from the EMR only, future work, using a qualitative
approach to the topic of interest with this population prospectively, could produce richer
results and greater detail regarding the emotions and values of the medical surrogates and
how they come to make the decisions that they do. A proposed study survey could
include questions related to patient and medical surrogate end-of-life care conversations,
life experiences and patient’s functional status, and quality of life prior to the
hospitalization. Other questions could inquire about the medical surrogate’s satisfaction
level with the care of the patient before and after the enactment of the goals of care
pathway decisions made after participating in a PCT-led family meeting.
Collecting information regarding the disposition of comfort focused care pathway
patients once discharged from the hospital setting could be useful to the hospice and
nursing home industries as they prepare services for the growing number of elders who
may be seeking of their services in the years to come. Having a thorough understanding
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of the needs and wants of patients whose goals of care are congruent with comfort is a
good first step to preparing care programs which will meet the needs of this growing
patient population.
This study evaluated just one race and these results cannot be generalized to
another race or culture. Repeating this work with other races and cultures could shed
light onto how humans address medical surrogate decision-making and advance care
planning following a PCT-led family meeting experience.
Implications for Clinical Practice and Research
The literature suggested that 25-50% of patients require a medical surrogate to
make care decisions on their behalf at some time during a chronic illness (Shalowitz et
al., 2006; Silveira et al., 2010). The evidence also suggested that those with ADs have
the best chance of receiving the type of care they want at end-of-life (Shalowitz et al.,
2006; Silveira et al., 2010). ADs are an important mechanism in honoring one’s
autonomy and right to self-determination. Health care providers hold an important role in
defending this right not just for African American patients, but for all of their patients.
Early in the course of an illness, care providers should determine whether an AD exists
for their patient. If this is not evident, they should encourage patients to complete their
AD, and have it available and easily accessible to family members, should it need to be
invoked. Additionally, health care providers must encourage and support patients and
families to have conversations regarding goals of care preferences for when the end-of-
life comes near. When medical surrogates and family members have a clear
understanding of the patient’s goals of care wishes, the decision-making will likely be
less burdensome; the decisions will be more congruent with what the patient prefers,
96


there will be less conflict between family members, and less post-traumatic stress and
guilt for the survivors (Barrio-Cantalejo et al., 2009; Braun et al., 2008; Van Eechoud et
al., 2014). Most importantly, these conversations will foster medical surrogate decision-
making which is accurate and congruent with what the patient would want.
Health care providers must be proactive in providing opportunities for the
completion of ADs in this population of interest. Community outreach by partnering
with community leaders and the clergy, and holding AD fairs and end-of-life planning
education sessions at meeting places in the community where African Americans come
together as barber shops, church gatherings, school assemblies, shopping venues, and
family reunions are just some of the ways health care providers can impact this health
care disparity for African American patients and their families (Holmstrom, 2013). ADs
are important tools, not just necessary to ensure the patient receives the care that he/she
prefers as end-of-life, but ADs are vital in upholding the patient’s right to autonomy at
the time in their lives when they are most vulnerable.
Ethnicity is accompanied by shared cultural beliefs and values that can influence
end-of-life decision-making (Johnson et al., 2008). African Americans cherish a culture
which is rich in its beliefs and values. The literature abundantly describes African
American preferences for on-going life-sustaining therapies. African Americans have
admitted their discomfort with conversations surrounding death, they are less likely than
other groups to have an AD, they confess to distrusting the health care system, and hold
spiritual beliefs which may conflict with the comfort focused care pathway and hospice
care (Born et al., 2004; Braun et al., 2008; Johnson et al., 2008; Payne et al., 2008;
Reynolds et al., 2008)). It is vital for PCTs, and all health care providers to have an
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appreciation for the cultural backgrounds and beliefs of the patients and medical
surrogates they care for. PCTs have a responsibility to the patients, medical surrogates,
and their families to tailor their meetings in such a way that the distinct needs of the
meeting participants are addressed. Providing care which is culturally sensitive, certainly
as it relates to end-of-life care, may be a good first attempt at remedying the on-going
distrust which some African Americans admit toward the health care system. Most
importantly, it is essential to provide culturally sensitive care so that goals of care
decisions can be made on behalf of incapacitated patients as they near the end of their
lives which are befitting them, in order to achieve a good dying experience for all the
stake holders.










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CHAPTER 6: CONCLUSIONS
All too often, hospitalized, incapacitated senior African Americans who suffer
from life limiting illnesses must have their end-of-life health care decisions made by
medical surrogates. Whether by proxy, ADs or the courts, it is common practice in our
health care organizations to call upon medical surrogates to make these weighty decisions
for another. When patients become incapacitated or too ill to make their own care
decisions at end-of-life, the best way to preserve their autonomy is through a medical
surrogate; one who uses substituted judgment to make decisions honorably, on behalf of
another. There are many factors that influence decision-making. Culture, values,
historical events, religion and spirituality, health literacy, mistrust of the health care
system, gender, kinship, age, diagnosis, and advance care planning are some of the things
which affect the decisions made by medical surrogates when they are deciding the future
course of medical care for another. It seems that the ideal way to execute medical
decision-making is for the patient to discuss his or her wishes with their designated
medical surrogate, and others at a time when the patient has capacity to do so. This
approach has been found to lessen the burden of this decision-making responsibility for
the medical surrogate at the time when such decisions need to be made.
The PCT-led family meeting is the keystone of what PCTs bring to the patient,
families and medical surrogates at a time when serious life limiting health conditions
require treatment options to be discussed and chosen. As illustrated by Imogene King’s
Theory of Goal Attainment, the practice of nurses [and others] is to help patients to
discover, attain and maintain their health care goals and comes about as a result of
effective caring transaction (King, 1992). These meetings are facilitated by physicians
99


and nurse practitioners who are skilled in the delivery of honest and sincere
communication regarding the graveness of medical conditions and expert in end-of-life
care planning options. Benefits of participating in such a meeting permit medical
surrogates and others the opportunity to ask questions and become familiar with the
various care pathway options available for the patient as they go forward. These
meetings are meant to support the medical surrogates and provide the information needed
in order to make the most informed and befitting medical decisions on behalf of those
who are unable to do so for themselves.
The findings of this retrospective pilot study reviewed the outcomes of such PCT-
led family meetings held on behalf of the population of interest. Unlike what has been
reported in the literature, this study discovered that following the PCT-led family
meeting, 40% of the medical surrogates of the population of interest converted their goals
of care pathway for the patient to a comfort focused care pathway. African Americans
have traditionally preferred aggressive restorative care, leaving their fate, often times “in
God’s hands” (Holmstrom, 2013), so these finding are surprising and so further work,
with larger sample sizes, will be needed to corroborate these findings.
Few in this study sample had evidence of an AD. This finding supports the
conclusions of others who have also discovered that African Americans are not likely to
have prepared an AD document. The literature submits that those with ADs are most
likely to receive the care they wish to receive at end-of-life. Medical surrogates are likely
to uphold what is written in one’s LW document. Health care providers and others who
prepare AD documents with patients need to educate the African American community
regarding end-of-life care planning, discuss it with their families and medical surrogates
100


and make the document available, should it ever need to be enacted. Such campaigning
will go far in eliminating the end-of-life care disparities that many African American
patients have already experienced because their medical surrogates were uninformed as
to what the patient preferred for end-of-life care. Likewise, it is believed that having an
AD lessens the burden of such weighty decision-making for the medical surrogate.
This study evaluated the EMRs of senior African Americans, and no relationship
between age and goals of care decision was uncovered. Actually, medical surrogates
opted for full restorative care as often for the oldest patients in the cohort as for the
youngest patients in this sample.
The medical surrogates in this study were mainly spouses or adult children. By
far, the majority of the medical surrogates were female, and the adult daughters of the
patients. There was no difference in the decision-making outcomes between sons and
daughters with respect to goals of care, which is an interesting finding. Wives were split
in their decisions for restorative versus comfort focused care for their husbands, and
husbands preferred restorative care over comfort focused care for their wives, following
participation in a PCT-led family meeting. This is interesting information for PCTs
because, by knowing in advance who will be participating in the family meeting
experience and making the care decisions, PCTs can tailor their meetings to address the
individual needs and concerns of the participants.
End-of-life care can be difficult and onerous to all the stakeholders. Additionally,
providing aggressive, restorative care which does not contribute to wellness or comfort of
the patient is expensive and imprudent. The PCT uses the PCT-led family meeting to
assist medical surrogates in their goals of care decision-making for another. Providing
101


clear and honest communication regarding the patient’s medical condition, in calm,
compassionate, and private settings, at a time when patients are failing, may be the most
important intervention held on behalf of the patient. Making such life-altering decisions
on behalf of another can be burdensome and cause the decision-maker great anguish.
Having a supportive team of professionals who are skilled in end-of-life care to interact
with, can make this difficult charge less distressing. This work is transferrable to other
palliative care programs because it brings an awareness regarding the goals of care
decision-making trends of the medical surrogates of hospitalized, incapacitated, senior,
African Americans suffering with life limiting illnesses. Having a clearer understanding
of the traits and trends of these decision-makers can assist PCTs as they prepare their
meetings so that they can effectively meet the needs of those who attend them.












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List of References
Abington Memorial Hospital. (2012). Advance directives/living will and/or durable
power of attorney.(Administrative policy NO. 14.24). Abington, PA.
Abington Memorial Hospital. (2013). Patient information – access, uses and disclosures
of patient health information. (Administrative policy NO. 1.33). Abington, PA.
Adamopoulos, H. (2013). The cost and quality conundrum of American end-of-life care.
Understanding Medicare, Care, Cost, Control and Consequences.
Retrieved from medicarenewsgroup.com/context/understanding-medicare
Agency for Healthcare Research and Quality. (2004). Literacy and Health Outcomes
Summary. Retrieved from
http://archive.ahrq.gov/downloads/pub/evidence/pdf/literacy/literacy.pdf
American Academy of Hospice and Palliative Medicine. (2013). Clinical Practice
Guidelines for Quality Palliative Care (3rd ed.). Retrieved from
http://www.nationalconsensusproject.org
American Medical Association (AMA). (1847). Code of Ethics of the American Medical
Association. Chicago, IL: American Medical Association Press. Retrieved from
www.ama-assn.org/resources/doc/ethics/x-pub/1847ccode.pdf
American Medical Association (AMA). (2001). Surrogate decision-making (8.081).
Retrieved from http://www.ama-assn.org/ama/pub/about-ama/ama-
foundation/our-programs/public-health/health-literacy-program.page



103


American Medical Association (AMA). (2004). Health Literacy. Retrieved from
http://www.ama-assn.org/analpub/about-ama/ovr-people/member-groups-
sections/medical-student-section/community-service/health-literacy.shtml
American Public Health Association. (2008). Patients’ rights to self-determination at the
End-of-life. Retrieved from http://www.freeebooksdl.com/12/D1-Patients-Rights-
to-Self-Determination-at-the-End-of-Life.html
Aoun, S., Bird, S., Kristjanson, L. J., & Currow, D. (2010). Reliability testing of the
FAMCARE-2 scale: Measuring family carer satisfaction with palliative care.
Palliative Medicine, 24(7), 674-681.
Back, A. L., Arnold, R. M., Baile, W. F., Tulsky, J. A., & Fryer-Edwards, K. (2009).
What makes education in communication transformative? Journal of Cancer
Education, 24, 160-162.
Banfield, B. E. (2013).Philosophical position on nature of human beings foundational to
Orem’s self-care deficit nursing theory. In W. K. Cody (Ed.), Philosophical and
Theoretical Perspectives for Advanced Nursing Practice (pp.81-93). Burlington,
MA: Jones and Bartlett Learning.
Barrio-Cantalejo, I. M., Molina-Ruiz, A., Simon-Lorda, P., Camara-Medina, C. ,Lopez, I.
T., del Mar Rodriguez del Aguila, M., & Bailon-Gomez, R. M. (2009). Advance
directives and proxies’ predictions about patients’ treatment preferences. Nursing
Ethics,16(1), 93-109.
Becker, G., Gates, R. J., & Newsom, E. (2004). Self-care among chronically ill African
Americans: Culture, health disparities, and health insurance. American Journal of
Public Health, 94(12), 2066-2073.
104


Berenson, M. L., Levine, D. M., & Krehbiel, T. C. (2006). Analysis of Variance. Basic
Business Statistics, Concepts and Applications (pp. 395-444). Upper saddle River,
NJ: Pearson Prentice Hall.
Billings, J. A. (2011a). The end-of-life family meeting in intensive care Part I:
Indications, outcomes, and family needs. Journal of Palliative Medicine, 14(9),
1042-1050.
Billings, J. A. (2011b). Part II: Family-centered decision making. Journal of Palliative
Medicine, 14(9), 1051-1057.
Billings, J. A., & Block, S. D. (2011). Part III: A guide for structured discussions.
Journal of Palliative Medicine, 14(9), 1058-1064.
Born, W., Greiner, K. A., Sylvia, E., Butler, J., & Ahluwalia, J. S. (2004). Knowledge,
attitudes, and beliefs about end-of-life care among inner-city African Americans
and Latinos. Journal of Palliative Care, 7(2), 247-256.
Boyd, E. A., Lo, B., Evans, L. R., Malvar, G., Apatira, L., Luce, J. M., & White, D. B.
(2010). “It’s not just what the doctor tells me:” Factors that influence surrogate
decision-makers’ perceptions of prognosis. Critical Care Medicine 38(5), 1270-
1275.
Boyd, E. L., Taylor, S. D., Shimp, L. A., & Selmer, C. R. (2000). An assessment of home
remedy use by African Americans. Journal of the National Medical Association,
92(7), 341-353.
Braun, U. K., Beyth, R. J., Ford, M. E., & McCullough, L. B. (2008). Voices of African
American, Caucasian, and Hispanic surrogates on the burdens of end-of-life
decision-making. Journal of General Internal Medicine, 23(3), 267-274.
105


Bush v Schiavo, 885 SE2d 321 (Florida 2004).
Candib, L. M. (2002). Truth telling and advanced planning at the end of life: Problems
with autonomy in a multicultural world. Families, Systems, and Health, 20(3),
213-228.
Caramenico, A. (2013). Scope of palliative care widens amid workforce shortage.
Fiercehealthcare.Retrieved from
http://www.fiercehealthcare.com/tags/workforce-shortage
Carrion, I. V., Park, N. S., & Lee, B. S. (2012). Hospice use among African Americans,
Asians, Hispanics, and Whites: Implications for practice. American Journal of
Hospice and Palliative Medicine, 29(9), 116-121.
Centers for Disease Control and Prevention. (2013). CDC health disparities and
inequalities report – United States, 2013. Morbidity and Mortality Weekly
Report, 62(3), 3-5.
Centers for Disease Control and Prevention. (2014). Black or African Populations.
Retrieved from http://www.cdc.gov/minorityhealth/populations/REMP/black.html
Cerminara, K. L. (2011, September). The law and its interaction with medical ethics in
end-of-life decision-making. CHEST, 140(3), 775-780.
Chai, E., & Meier, D. E. (2011). Identifying the effective components of palliative care.
Archives of Internal Medicine, 171(7), 655-656.
Connor-Linton, J. (2010). Chi-Square Test. Retrieved from
http://srmo.sagepub.com.ezproxy2.library.drexel.edu/view/encyclopedia-of-
research-design/n48.xml

106


Coolan, P.R. (2012). Culture relevance in end-of-life care. Retrieved from
https://ethnomed.org/clinical/end-of-life/cultural-relevance-in-end-of-life-
care
Crawford, B. M., Meana, M., Stewart, D., & Cheung, A. M. (2000). Treatment decision
making in mature adults: Gender differences. Health Care for Women
International, 21, 91-104.
Cruzan v Missouri Department of Health, 497 US 261 US 278-279 (1990).
Dahlin, C. (Ed.). (2013). The Clinical Practice Guidelines for Quality Palliative Care (3
ed.). Retrieved from
http://www.nationalconsensusproject.org/Guidelines_Download2.aspx
Department of Health. (2009). Definition of Health Literacy. Retrieved from
http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Publichealth/Hea
lthimprovement/Healthliteracy/DH_095381
Draninoni, M., Rajabiun, S., Rumptz, M., Welles, S. L., Relf, M., Rebholz, C., . . . Frye,
A. (2008). Health literacy for HIV-positive individuals enrolled in an outreach
intervention: Results of a cross-site analysis. Journal of Health Communication,
13(3), 287-302.
Eck, D. & Ryan, J. (n.d.). The chi-square statistic. The Mathbeans Project. Retrieved
from http://math.hws.edu/javamath/ryan/Chisquare.html
Ellis, G. (2011, August 30). The plight of African-American doctors. The Philadelphia
Tribune. Retrieved from http://www.phillytrib.com/healtharticles/item/209-the-
plight-of-african-american-doctors.html

107


Emanuel, E. J. (2013, Jan 4). Better if not cheaper for the dying. Penn: Department of
Medical Ethics and Health Policy. Retrieved from
http://medicalethics.med.upenn.edu/news/2013/01/04/better-if-not-cheaper-care-
for-the-dying
Field, M. J., & Cassel, C. K. (Eds.). (1997). Report: Approaching death, improving
care at end-of-life. Washington DC: National Academies Press.
Fineberg, I. C. (2005). Preparing professionals for family conferences in palliative care:
Evaluation results of an interdisciplinary approach. Journal of Palliative
Medicine, 8, 857-866.
Fosler, L., Staffileno, B. A., Fogg, L., & O’Mahony, S. (2015). Cultural differences in
discussion of do-not-resuscitate status and hospice. Journal of Hospice and
Palliative Nursing17(2), 128-132.
Frey, M. A., Sieloff, C. L., & Norris, D. M. (2002). King’s conceptual system and theory
of goal attainment: Past, present, and future. Nursing Science Quarterly, 15, 107-
112.
Friedman, D. B., Corwin, S. J., Dominick, G. M., & Rose, I. D. (2009). African
American men’s understanding and perceptions about prostate cancer: Why
multiple dimensions of health literacy are important in cancer communication.
Journal of Community Health: The Publication for Health Promotion and
Disease Prevention, 34(5), 449-460.
Givens, J. L., Tjia, J., Zhou, C., Emanuel, E., & Ash, A. S. (2010). Racial differences in
hospice utilization for heart failure. Archives of Internal Medicine, 170(5), 427-
432.
108


Graber, M., & Tansey, J. (2005). Autonomy, consent and limiting health care costs.
Journal of Medical Ethics, 31, 424-426.
Graham, S. (2004). Hormone found linked to mother’s protective instincts, Scientific
American. Retrieved from http://www.scientificamerican.com/article/hormone-
found-linked-to-m/
Harvard Opinion Research Program at the Harvard School of Public Health, Robert
Wood Johnson Foundation, & NPR. (2013). African Americans’ Lives Today.
Health Care Decision-making, Pa Code § 6000.1014 (2004).
Heitler, S. (2012). How gender differences make decision-making difficulties.
Psychology Today. Retrieved from
http://www.psychologytoday.com/blog/resolution-not-conflict/201202/how-
gender-differences-make-decision-making-difficulties
Henry J. Kaiser Family Foundation. (2012). Health Care Costs; A Primer. Retrieved from
http://kff.org/report-section/health-care-costs-a-primer-2012-Report/
Holmstrom, E. (2013). Strengthening end-of-life care for African-American patients and
families through education and community outreach. OMEGA, 67(1-2), 115-119.
Hudson, P., Quinn, K., O’Hanlon, B., & Aranda, S. (2008). Family meetings in palliative
care: Multidisciplinary clinical practice guidelines. Retrieved from
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2542352
IBM Corporation Released 2011. IBM SPSS Statistics for Windows, Version 20.0
Armonk, NY: IBM Corp.
In re Quinlan, 355 A2d 647 NJ (1976).

109


Institute of Medicine (IOM). (1998). Approaching Death: Improving Care at the End of
Life. Retrieved from http://www.iom.edu/Reports/1998/Approaching-Death-
Improving-Care-at-the-End-of-Life.aspx
Institute of Medicine (IOM). (2004). Health Literacy: A Prescription to End Confusion.
Washington DC: The National Academies Press.
Institute of Medicine (IOM). (2008). Retooling for an Aging America: Building the
Healthcare Workforce. Washington DC: The National Academies Press.
Institute of Medicine (IOM). (2014). Dying in America: Improving Quality and
Honoring Individual Preferences Near the End of Life. Washington DC: The
National Academies Press.
Jacobs, E. A., Mendenhall, E., McAlearney, A. S., Rolle, I., Whitaker, E. E., Warnecke,
R, & Estwing-Ferrans, C. (2011). An exploration study of how trust in health
care institutions varies across African American, Hispanic and White
populations. Communication and Medicine, 8(1), 89-98.
Jacobs, E. A., Rolle, I., Ferrans, C. E., Whitaker, E. E., & Warnecke, R. B. (2006).
Understanding African Americans views of the trustworthiness of physicians.
Journal of General Internal Medicine, 21, 642-647.
Jacobsen, K. H. (2012). Introduction to Health Research Methods. Sudbury, MA: Jones
& Bartlett Learning.
Jenkins, C., Lapell, N., Zapka, J. G., & Kurent, J. E. (2005). End-of-life care and African
Americans; Voices from the community. Journal of Palliative Medicine, 8(3),
585-592.

110


Johnson, K. S., Kuchibhatla, M., & Tulsky, J. A. (2008). What explains racial differences
in the use of advanced directives and attitudes toward hospice care? Journal of the
American Geriatric Society, 56, 1953-1958.
Kaplan, M. (2010). SPIKES: A framework for breaking bad news to patients with cancer.
Clinical Journal of Oncology Nursing, 14(4), 514-516.
Kapral, M. K. (2006). Stroke; Gender differences in attitude may influence decision-
making for stroke patients. Medical Care, 44(1), 70-80.
Kennard, C. L. (2015). Balancing faith and science in the I.C.U. The New York Times.
Retrieved from http://opinionator.blogs.nytimes.com/2015/04/15/balancing-faith-
and-science-in-the-i-c-u/?
Kennedy, B. R., Mathis, C. C., & Woods, A. K. (2007). African Americans and their
distrust of the health care system: Health care for diverse populations. Journal of
Cultural Diversity, 14(2), 56-60.
Kenney, J. W. (2013). Theory-based advanced practice nursing. In W. K. Cody (Ed.),
Philosophical and Theoretical Perspectives. Burlington, MA: Jones & Bartlett
Learning.
Khandelwal, N., Kross, E. K., Engelberg, R. A., Coe, N. B., Long, A. C., & Curtis, J. R.
(2015). Estimating the effect of palliative care interventions and advance care
planning on ICU utilization: A systematic review. Critical Care Medicine, 43(5),
1102-1111.
Khowaja, Khurshid. (2006). Utilization of King’s interacting systems framework and
Theory of Goal Attainment with new multidisciplinary model: Clinical pathway.
Australian Journal of Advanced Nursing, 24(2), 44-50.
111


King, I. M. (1981). A Theory for nursing: Systems, concepts, process. New York, NY:
Delmar Publishers Inc.
King, I. M. (1992). King’s Theory of Goal Attainment. Nursing Science Quarterly, 5(1),
19-26.
King, I. M. (1994). Quality of life and goal attainment. Nursing Science Quarterly, 7(1),
29-32.
King, I. M. (1997). King’s theory of goal attainment in practice. Nursing Science
Quarterly, 10, 180-185.
King, I. M. (1999). Theory of goal attainment: Philosophy and ethical implications.
Nursing Science Quarterly, 12(4), 292-296.
Kinnear, P. R., & Gray, C. D. (2011). IBM SPSS 18 Statistics Made Simple. New York,
NY: Psychology Press.
Kochanek, K. D., Arias, E., & Anderson, R. N. (2013). How did cause of death contribute
to racial differences in life expectancy in the United States in 2010? CDC:
National Center for Health Statistics Data Brief, 125.
Kraukaver, E. L., & Truog, R. D. (1997). Mistrust, racism and end-of-life treatment.
Hastings Center Report, 27, 23-25.
Kubler-Ross, E. (1969). On Death and Dying. New York, NY: Macmillan Publishing
Company.
Kutner, M., Greenberg, E., Jin, Y., & Paulson, C. (2006). The Health Literacy of
American Adults: Results From the 2003 National Assessment of Adult Literacy.
Retrieved from http://nces.ed.gov/pubs2006/2006483.pdf

112


Liao, Y., Giles, W., Bang, D., Cosgrove, S., Dulin, R., Harris, Z., . . . Liburd, L. (2011).
Surveillance of health status in minority communities – racial and ethnic
approaches to community health across the U.S. Morbidity and Mortality Weekly
Report Surveillance Summaries,60(6), 1- 44.
Likert. (2013). Retrieved from http://www.businessdictionary.com
Limerick, M. H. (2007). The process used by surrogate decision-makers to withhold or
withdraw life-sustaining measures in an intensive care environment. Oncology
Nursing Forum, 34(2), 331-339.
Lissauer, M. E., Smitz-Naranjo, L., & Johnson, J. B. (2011). Gender influences end-of-
life decisions. Critical Care, 15(Suppl 1), 522.
Lo, C, Burman, D, Rodin, G, Zimmermann, C. (2009). Measuring patient satisfaction in
oncology palliative care: Psychometric properties of the FAMCARE-patient
scale. Quality of Life Research 18, 747-752
Loscalzo, M. J. (2008). Palliative care: An historical perspective. Hematology, 1, 465.
Lynch, H. F., Mathes, M., & Sawicki, N. N. (2008). Compliance with advance directives.
Journal of Legal Medicine, 29(2), 133-178.
Lynch, M., Dahlin, C., Hultman, T., & Coakley, E. E. (2011). Palliative care nursing.
Journal of Hospice & Palliative Nursing, 13(2), 106-111.
Mack, J. W., Paulk, M. E., Viswanath, K., Prigerson, H. G. (2010). Racial disparities in
the outcomes of communication on medical care received near death. Archives of
Internal Medicine, 170(17), 1533-1540.


113


Malveaux, J. (2008). Perspectives: The status of African-American Women. Diverse
Issues in Higher Education. Retrieved from
http://www.diverseeducation.com/article/10797
Mamajlodi, M. (2006). What is the chi-square statistic? Retrieved from
http://cnx.org/content/m13487/latest/
Mazanec, P. M., Daly, B. J., & Townsend, A. (2010). Hospice utilization and end-of-life
care decision-making of African Americans. American Journal of Hospice and
Palliative Medicine, 27(8), 560-566.
McCoy, R. (2011). African American elders, cultural traditions, and the family reunion.
Generations: The Journal of the American Society on Aging. Retrieved from
http://www.asaging.org/blog/african-american-elders-cultural-traditions-and-
family-reunion
McMahan, R. D., Knight, S. J., Fried, T. R., & Sudore, R. L. (2013). Advance care
planning beyond advance directives: Perspectives from patients and surrogates.
Journal of Pain and Symptom Management, 46(3), 355-365.
Medical College of Wisconsin. (2010). The family goal setting conference: Palliative
care tools, training, & technical assistance. Retrieved from http://www.CAPC.org/
Messmer Ed., P. R. (2007). Tribute to theorists: Imogene M. King over the years.
Nursing Science Quarterly, 20, 198.
Milbrandt, E. B., Kersten, A., Rahim, M. T., Dremsizov, T. T., Clermont, G., . . .
Linde-Zwirble, W. T. (2008). Growth of intensive care unit resource use in
Medicare. Society of Critical Care Medicine, 36(9), 2504-2510.

114


Morrison, R. S., Dietrich, J., Ladwig, S., Quill, T., Sacco, J., Tangeman, J., & Meier, D.
E. (2011). Palliative care consultation teams cut hospital costs for Medicaid
beneficiaries. Health Affairs, 30(3), 454-463.
Morrison, R. S., Penrod, J. D., Cassel, J. B., Caust-Ellenbogen, M., Litke, A., Spragens,
L., & Meier, D. E. (2008). Cost savings associated with US hospital palliative
care consultation programs. Archives of Internal Medicine, 168(16), 1783-1790.
Muni, S. Engleberg, R. A., & Treece, P. D. (2011). The influence of race/ethnicity and
Socioeconomic status on end-of-life care in the ICU. CHEST, 139, 1025-1033.
Murphy, S. L., Xu, J. Q., & Kochanek, K. D. (2013). Deaths: Final data for 2010.
National Vital Statistics Reports, 16(4). Hyattsville, MD: National Center for
Health Statistics.
Mutchler, P. (2003). Women and caregiving: Facts and figures. Family Caregiver
Alliance. The National Center on Caregiving. Retrieved from
http://www.caregiver.org/women-and-caregiving-facts-and-figures
National Bioethics Advisory Commission (NBAC). (2001). The assessment of risk and
potential benefit. Retrieved from
http://Bioethics.georgetown.edu/nbac/capacity/Assessment.htm
National Institute for Health Care Management Foundation. (2012). The concentration of
health care spending. NIHCM Foundation Data Brief July 2012. Retrieved from
www.nihcm.org/pdf/DataBrief3%20Final.pdf



115


National Institute of Health. (1979). The Belmont Report: Ethical principles and
guidelines for the protection of human subjects of research.
Government Printing Office. Nuremberg Code [Law No. 10]. (1949).
Washington, DC: US Government Printing.
Norton, S. A., Hogan, L. A., Holloway, R. G., Temkin-Greener, H., Buckley, M J., Quill,
T. E. (2007). Proactive palliative care in the medical intensive care unit: effects on
length of stay for selected high-risk patients. Critical Care Medicine, 35(6), 1530-
1535.
Nuremberg Military Tribunals Volume II. (1949). The medical case. The Trials of War
Criminals Before the Nuremberg Military Tribunals. Washington, DC: US
Government Printing Office. Retrieved from
http://www.loc.gov/rr/frd/Military_Law/pdf/NT_war-criminals_Vol-II.pdf
Nursing Theory. (2013). Imogene King – nursing theorist. Retrieved from
http://www.nursing-theory.org/nursing-theorists/Imogene-King.php
Omnibus Budget Reconciliation Act of 1990, H.R. 5835, 101
st
. (1990). Retrieved from
https://www.govtrack.us/congress/bills/101/hr5835#summary/libraryofcongress
Orem, D. (1995). Concepts of Practice. St. Louis: Mosby.
Orr, R. D. (2004). Competence, capacity, and surrogate decision-making. Clinical and
Medical Ethics. Retrieved from http://www.cbhd.org/content/competence-
capacity-and-surrogate-decision-making
Parker, S. M., Remington, R., Nannini, A., & Cifuentes, M. (2013). Patient outcomes and
satisfaction with care following palliative care consultation. Journal of Hospice
and Palliative Nursing,15(4), 225-232.
116


Parks, S. M., Winter, L., Santana, A. J., Parker, B., Diamond, J. J., Rose, M., & Myers, R.
E. (2011). Family factors in end-of-life decision-making: Family conflict and
proxy relationship. Journal of Palliative Medicine, 14(2), 179-184.
Payne, R. (2001). Palliative care of African Americans and other vulnerable populations:
Access and quality issues. In Foley, K.M. Editor, Gelband, H. Editor (Eds.),
Improving Palliative Care for Cancer (pp. 153-160). Washington, DC: The
National Academies Press.
Payne, R., Armstrong, T., Johnson, K., & Robinson, U. (2008). A progressive palliative
care educational curriculum for the care of African Americans at life’s end. In
APPEAL. Durham, NC: Duke Institute on Care at the End of Life.
Pennsylvania Act 169. (2006). Advance Directives. Retrieved from
http://www.pamedsoc.org/advancedirectives
Pollak, K. I., Childers, J. W., & Arnold, R. M. (2011). Applying motivational
interviewing techniques to palliative care communication. Journal of Palliative
Medicine, 14(5), 587-592.
Pollard, K., & Scommenga, P. (2014). Just how many baby boomers are there?
Population 2014 Reference Bureau. Retrieved from
www.prb.org/Publications/Articles/2002/JustHowManyBabyBoomersAreThere.a
spx
Pope, T. M. (2012). Legal fundamentals of surrogate decision-making. CHEST, 141(4),
1074-1081.


117


Quill, T. E., Holloway, R. G., Shah, M. S., Caprio, T. V., Olden, A. M., & Storey, C. P.
(2010). Primer of Palliative Care (5th ed.). Glenview, IL: American Academy of
Hospice and Palliative Medicine.
Randall, V. (1996). Slavery, Segregation and Racism: Trusting the health Care System
Ain’t Easy. Retrieved from
http://academic.udayton.edu/health/05bioethics/slavery02.htm
Reynolds, K. S., Hanson, L. C., Henderson, M., & Steinhauser, K. E. (2008). End-of-life
care in nursing home settings: Do race or age matter? Palliative and Supportive
Care, 6(1), 21-27.
Ringdal, G. I., Jordhoy, M. S., & Kaasa, S. (2003). Measuring quality of palliative care:
Psychometric properties of the FAMCARE scale. Quality of Life Research, 12,
167-176.
Roberts, D. (1998). Killing the black body: Race, reproduction, and the meaning of
liberty. Harvard Women’s Law Journal, 21, 327-340.
Roeland, E., Cain, J., Onderdonk, C., Kerr, K., Mitchell, W., & Thornberry, K. (2014).
When open-ended questions don’t work: The role of palliative paternalism in
difficult medical decisions. Journal of Palliative Medicine, 17(4), 415-420.
Rosenzweig, M. Q. (2012). Breaking bad news: A guide for effective and empathetic
communication. The Nurse Practitioner: The American Journal of Primary
Health Care, 37(2), 1-4.
Sangermano, C. (1992). The patient self-determination act. Seminars in Perioperative
Nursing, 1(4), 232-239.

118


Shalowitz, D. I., Garrett-Mayer, & E., Wendler, D. (2006). The accuracy of surrogate
decision makers: A systematic review. Archives of Internal Medicine, 166(5),
493-497.
Sharp, S., Carr, D., & Macdonald, C. (2012). Religion and end-of-life treatment
preferences: Assessing the effects of religious denomination and beliefs. Social
Forces, 91(1), 275-300.
Sherman, D. W., & Cheon, J. (2012). Palliative care: A paradigm of care responsive to
the demands for health care reform in America. Nursing Economics, 30(3), 153-
166.
Sieloff, C. L., & Frey, M. A. (2007). Middle Range Theory Development Using King’s
Conceptual System. New York, NY: Springer Publishing Company.
Silveira, M. J., Kim, S.Y.H., & Langa, K. M. (2010). Advance directives and outcomes
of surrogate decision making before death. The New England Journal of
Medicine,362(13), 1211-1218.
Smith, A. K., Davis, R. B., & Krakauer, E. L. (2007). Differences in the quality of the
patient-physician relationship among terminally ill African Americans and white
patients: Impact on advanced care planning of general and treatment practices.
Journal of Internal Medicine, 22, 1579-1582.
Smith, A. K., McCarthy, E. P., & Paulk, E. (2008). Racial and ethnic differences in
advance care planning among patients with cancer: impact of terminal illness
acknowledgement, religiousness, and treatment preferences. Journal of Clinical
Oncology, 26, 4131-4137.

119


Song, M. K., Ward, S. E., & Lin, F. C. (2012). End-of-life decision-making confidence in
surrogates of African-American dialysis patients is overly optimistic. Journal of
Palliative Medicine, 15(4), 412-417.
Suite, D. H., LaBril, R., Primm, A., & Harrison-Ross, P. (2007). Beyond misdiagnosis,
misunderstanding, and mistrust: Relevance of the historical perspective in the
medical and mental health treatment of people of color. Journal of the National
Medical Association, 99(8), 879-885.
Taxis, J. C. (2006). Attitudes, values, and questions of African Americans regarding
participation in hospice programs. Journal of Hospice and Palliative Nursing,
8(2), 77-85.
Temel, J. S., Pirl, W. F., Billings, J. A., Lynch, T. J., Greer, J. A., Myzikausky, A., . . .
Jacobsen, J. (2010). Early palliative care for patients with metastatic non-small
cell lung cancer. The New England Journal of Medicine, 363(8), 733-742.
Terry, A. J. (2012). Clinical research for the doctor of nursing practice. Sudbury MA:
Jones & Bartlett Learning.
The Pennsylvania CODE. (2011). Procedure for surrogate health care decision making:
subchapter R.Pa.B. 352. §6000.1014. Retrieved from
http://www.pacode.com/secure/data/055/chapter6000/subchapRtoc.html
Torke, A. M., Alexander, G. C., & Lantos, J. (2008). The limitations of autonomy in
surrogate decision-making. Journal of General Internal Medicine, 23(9), 1514-
1517.


120


Torke, A. M., Garas, N. S., Sexson, W., & Branch, W. T. (2005). Medical care at end of
life: Views of African American patients in an urban hospital. Journal of
Palliative Medicine, 8(3), 593-602.
Torke, A. M., Sachs, G. A., Helft, P. R., Petronio, S., Purnell, C.,Hui, S., & Callahan, C.
M. (2011). Timing of do-not-resuscitate orders for hospitalized older adults who
require a surrogate decision-maker. Journal of the American Geriatrics Society,
59, 1326-1331.
Towey, J. (2011). Five Wishes. Retrieved from http://www.agingwithdignity.org/five-
wishes.php
University of California, Irvine. (2011). Privacy v confidentiality: What is
the difference. Retrieved from http://www.research.uci.edu/compliance/human-
research-protections/docs/privacy-confidentiality-hrp.pdf
University of Michigan. (2014). Growing Older in America: The Health and Retirement
Study. Retrieved from http://hrsonline.isr.umich.edu/index.php?p=dbook
US Census Bureau. (2014). The 2012 Statistical Abstract. Retrieved from
http://www.census.gov/compendia/Statab/2012edition.htm
US Department of Health and Human Services. (2012). The Affordable Care Act and
African Americans. Retrieved from
http://www.rwjf.org/en/library/research/2013/06/african-american-harvard-rwjf-
npr-poll.html
US Department of Health and Human Services Administration on Aging. (2010). A
statistical profile on Black Americans aged 65+. Retrieved from
http://www.olderadultfocus.org/Awareness/profile.pdf
121


Van Eechoud, I. J., Piers, R. D., Van Camp, S., Grypdonck, M., Van Den Noortgate, N.
J., Deveugele, M. . . Verhaeghe, S. (2014). Perspectives of family members on
planning end-of-life care for terminally ill and frail older people. Journal of Pain
and Symptom Management, 47(5), 876-886.
Vig, E. K., Starks, H., Taylor, J. S., Hopley, E. K., & Fryer-Edwards, K. (2007).
Surviving surrogate decision-making: What helps and hampers the experience of
making medical decisions for others. Journal of General Internal Medicine, 22,
1274-1279.
Volandes, A. E., Paasche-Orlow, M., Gillick, M. R., Cook, E. F., Shaykevich, S., Abbo,
E. D., & Lehmann, L. (2008). Health literacy not race predicts end-of-life care
preferences. Journal of Palliative Medicine, 11(5), 754-764.
Wall, J. F. (2011b, June). A brief historical and theoretical perspective on patient
autonomy and medical decision-making Part 2. CHEST, 139(6), 1491-1497.
Wall, J. F. (2011a, March). A brief historical and theoretical perspective on patient
autonomy and medical decision-making Part 1. CHEST, 139(3), 669-673.
Washington, H. A., Baker, R. B., Olakanmi, O., Savitt, T. L., Jacobs, E. A., Hoover, E.,
& Wynia, M. K. (2009). Segregation, civil rights, and health disparities: The
legacy of African American physicians and organized medicine, 1910-1968.
Journal of the National Medical Association, 101(6), 513-527.
Washington, K. T., Bickel-Swenson, D., & Stephens, N. (2008). Barriers to hospice use
among African Americans: A systematic review. Health & Social Work, 33(4),
267-274.

122


Weekes, C. V. (2012). African Americans and health literacy: A systematic review.
Association of Black Nursing Faculty Journal, 23(4), 76-80.
Welch, L. C., Teno, J. M., & Mor, V. (2005). End-of-life care in black and white: Race
matters for medical care of dying patients and their families. Journal of the
American Geriatrics Society, 53, 1145-1153.
White, R. (2000). Unraveling the Tuskegee study of untreated syphilis. Archives of
Internal Medicine, 160(5), 585-598.
Winston, C. A., Leshner, P., Kramer, J., & Allen, G. (2005). Overcoming barriers to
access and utilization of hospice and palliative care services in African-American
communities. OMEGA, 50(2), 151-163.
World Health Organization (WHO). (1984). Health education in self-care: Possibilities
and limitations. Report of a Scientific Consultation. Retrieved
from http://www.who.int/iris/handle/10665/70092
World Health Organization (WHO). (2014). Definition of an older or elderly person.
Health Statistics and Information Systems.
Retrieved from http://www.who.int/healthinfo/survey/ageingdefnolder/en/
Zaide, G. B., Pekmezaris, R., Nouryan, C. N., Mir, T. P., Sison, C. P., Liberman, T., . . .
Wolf-Klem, G. P. (2013). Ethnicity, race and advance directives in an inpatient
palliative care consultation service. Palliative and Supportive Care, 11, 5-11.
Zapka, J. G., Carter, R., Carter, C. L., Hennessy, W., Kurent, J. E., & DesHarnais, S.
(2006). Care at the end of life: Focus on communication and race. Journal of
Aging and Health, 18(6), 791-813.

123


Zettel-Watson, L., Ditto, P. H., Danks, J. H., & Smucker, W. D. (2008). Actual and
perceived gender differences in the accuracy of surrogate decisions about life-
sustaining medical treatment among older spouses. Death Studies, 32(3), 273-290.
Zhang, N., & Zhang, J. (2014). The individual differences of ethical decision makers.
Advances in Management, 7(5), 34-36.
124
















Figure 1. Determination for Medical Decision Making.
Pennsylvania CODE. (2011) Procedure for surrogate health care decision
making. Subchapter R , 41 Pa.B.352§6000.1014.

Does the patient have
mental capacity?
If NO, is there a Durable Power
of Attorney (DPOA)?
If YES, the DPOA or
guardian shall make
health care decisions.
If NO, patient’s
representative, or surrogate
shall make health care
decisions:
If NO representative, or
surrogate, contact legal to
obtain a court appointed
guardian.
 Spouse (no divorce
pending)
 Adult children
 Parents
 Adult siblings
 Adult grandchildren
 Someone familiar with the
patient



Adult grandchildren
 All other relatives or
friends
If YES, the patient shall
make all health care
decisions.
125




















Figure 2. Procedure for End–of-Life Surrogate Health Care Decision Making
The Pennsylvania CODE. (2011). Procedure for surrogate health care decision making.
Subchapter R , 41 Pa.B.352 §6000.1014.
Is the Patient
Competent?
If YES, the patient
will make decisions.
If NO, is there an end stage condition
or is pt. permanently unconscious?
If YES, is there a guardian or advance
directive (durable power of attorney
[DPOA] or living will)?
If NO, is there a guardian
or healthcare power of attorney?
If YES,
DPOA makes
decisions.
Obtain name.
If NO,
Surrogate
makes
decisions:

If NO DPOA
or surrogate can
be located . . .
If YES,
DPOA
makes
decisions.
If NO, surrogate
may decide to
continue
treatment but
may not make
decisions to
withdraw or
withhold it.
If NO
DPOA or
Surrogate
can be
located…
Guardianship
proceedings
in court may
apply.
Guardianship
proceedings
may apply.
Spouse (no
divorce
pending)
Adult who has
knowledge
of the patient’s
wishes.
Adult
children of
the patient
Parents of
the patient
Adult
siblings of
the patient
Spouse (no
divorce
pending)
Adult
children of the
patient
Parents of the
patient Adult
siblings of
the patient
Adult who has
knowledge of
the patient’s
wishes.
Adult grand-
children of
the patient
Adult
grandchildren of
the patient
126




Figure 3. KING’S MODEL FOR NURSE-PATIENT TRANSACTION
(Theory of Goal Attainment). King, I. (1981). A Theory For Nursing:
Systems, Concepts, Process.



127



P
al
lia
ti
ve



C
ar
e
Fi
gu
re
4
. P
al
lia
ti
ve
C
ar
e
Te
am
-l
ed
F
am
ily
M
ee
ti
n
g
P
ro
ce
ss
M
ap

128







Figure 5. Patient’s Gender/Medical Surrogate’s Post Family
Meeting Pathway of Care Decision





129






Figure 6. Kinship of the Medical Surrogate to the Patient











130






Figure 7. Mean Length of Stay (days)/Medical Surrogate’s
Post Family Meeting Pathway of Care Decision





D
ays
131






Figure 8. Medical Surrogate’s Post Family Meeting Pathway
of Care Decision





132





Figure 9. Existence of an Advance Care Plan




133






Figure 10. Patient’s Decision on Living Will/Medical
Surrogate’s Post Family Meeting Pathway of Care Decision





134






Figure 11. Patient’s Age/Medical Surrogate’s Post Family
Meeting Pathway of Care Decision





135






Figure 12. Medical Surrogate’s Gender/Medical Surrogate’s
Post Family Meeting Pathway of Care Decision





136






Figure 13. Medical Surrogate’s Kinship to the Patient/Medical Surrogate’s Post
Family Meeting Pathway of Care Decision















137


APPENDIX A: A Patient’s Bill of Rights

A Patient's Bill of Rights was first adopted by the
American Hospital Association in 1973.
This revision was approved by the AHA Board of Trustees on October 21, 1992.
Introduction
Effective health care requires collaboration between patients and physicians and
other health care professionals. Open and honest communication, respect for personal and
professional values, and sensitivity to differences are integral to optimal patient care. As
the setting for the provision of health services, hospitals must provide a foundation for
understanding and respecting the rights and responsibilities of patients, their families,
physicians, and other caregivers. Hospitals must ensure a health care ethic that respects
the role of patients in decision making about treatment choices and other aspects of their
care. Hospitals must be sensitive to cultural, racial, linguistic, religious, age, gender, and
other differences as well as the needs of persons with disabilities.
The American Hospital Association presents A Patient's Bill of Rights with the
expectation that it will contribute to more effective patient care and be supported by the
hospital on behalf of the institution, its medical staff, employees, and patients. The
American Hospital Association encourages health care institutions to tailor this bill of
rights to their patient community by translating and/or simplifying the language of this
bill of rights as may be necessary to ensure that patients and their families understand
their rights and responsibilities.
Bill of Rights

These rights can be exercised on the patient’s behalf by a designated surrogate or
proxy decision maker if the patient lacks decision-making capacity, is legally
incompetent, or is a minor.
1. The patient has the right to considerate and respectful care.

2. The patient has the right to and is encouraged to obtain from physicians
and other direct caregivers relevant, current, and understandable information concerning
diagnosis, treatment, and prognosis.

138


Except in emergencies when the patient lacks decision-making capacity and the
need for treatment is urgent, the patient is entitled to the opportunity to discuss and
request information related to the specific procedures and/or treatments, the risks
involved, the possible length of recuperation, and the medically reasonable alternatives
and their accompanying risks and benefits.

Patients have the right to know the identity of physicians, nurses, and others
involved in their care, as well as when those involved are students, residents, or other
trainees. The patient also has the right to know the immediate and long-term financial
implications of treatment choices, insofar as they are known.

3. The patient has the right to make decisions about the plan of care prior to
and during the course of treatment and to refuse a recommended treatment or plan of care
to the extent permitted by law and hospital policy and to be informed of the medical
consequences of this action. In case of such refusal, the patient is entitled to other
appropriate care and services that the hospital provides, or transfers to another hospital.
The hospital should notify patients of any policy that might affect patient choice within
the institution.

4. The patient has the right to have an advance directive (such as a living
will, health care proxy, or durable power of attorney for health care) concerning
treatment or designating a surrogate decision maker with the expectation that the hospital
will honor the intent of that directive to the extent permitted by law and hospital policy.

Health care institutions must advise patients of their rights under state law and
hospital policy to make informed medical choices, ask if the patient has an advance
directive, and include that information in patient records. The patient has the right to
timely information about hospital policy that may limit its ability to implement fully a
legally valid advance directive.

5. The patient has the right to every consideration of privacy. Case
discussion, consultation, examination, and treatment should be conducted so as to protect
each patient's privacy.

6. The patient has the right to expect that all communications and records
pertaining to his/her care will be treated as confidential by the hospital, except in cases
such as suspected abuse and public health hazards when reporting is permitted or
required by law. The patient has the right to expect that the hospital will emphasize the
139


confidentiality of this information when it releases it to any other parties entitled to
review information in these records.

7. The patient has the right to review the records pertaining to his/her
medical care and to have the information explained or interpreted as necessary, except
when restricted by law
.
8. The patient has the right to expect that, within its capacity and policies, a
hospital will make reasonable response to the request of a patient for appropriate and
medically indicated care and services. The hospital must provide evaluation, service,
and/or referral as indicated by the urgency of the case. When medically appropriate and
legally permissible, or when a patient has so requested, a patient may be transferred to
another facility. The institution to which the patient is to be transferred must first have
accepted the patient for transfer. The patient must also have the benefit of complete
information and explanation concerning the need for, risks, benefits, and alternatives to
such a transfer.

9. The patient has the right to ask and be informed of the existence of
business relationships among the hospital, educational institutions, other health care
providers, or payers that may influence the patient's treatment and care.

10. The patient has the right to consent to or decline to participate in proposed
research studies or human experimentation affecting care and treatment or requiring
direct patient involvement, and to have those studies fully explained prior to consent. A
patient who declines to participate in research or experimentation is entitled to the most
effective care that the hospital can otherwise provide.

11. The patient has the right to expect reasonable continuity of care when
appropriate and to be informed by physicians and other caregivers of available and
realistic patient care options when hospital care is no longer appropriate.

12. The patient has the right to be informed of hospital policies and practices
that relate to patient care, treatment, and responsibilities. The patient has the right to be
informed of available resources for resolving disputes, grievances, and conflicts, such as
ethics committees, patient representatives, or other mechanisms available in the
institution. The patient has the right to be informed of the hospital's charges for services
and available payment methods.

140


The collaborative nature of health care requires that patients, or their
families/surrogates, participate in their care. The effectiveness of care and patient
satisfaction with the course of treatment depend, in part, on the patient fulfilling certain
responsibilities. Patients are responsible for providing information about past illnesses,
hospitalizations, medications, and other matters related to health status. To participate
effectively in decision making, patients must be encouraged to take responsibility for
requesting additional information or clarification about their health status or treatment
when they do not fully understand information and instructions. Patients are also
responsible for ensuring that the health care institution has a copy of their written
advance directive if they have one. Patients are responsible for informing their physicians
and other caregivers if they anticipate problems in following prescribed treatment.

Patients should also be aware of the hospital's obligation to be reasonably
efficient and equitable in providing care to other patients and the community. The
hospital's rules and regulations are designed to help the hospital meet this obligation.
Patients and their families are responsible for making reasonable accommodations to the
needs of the hospital, other patients, medical staff, and hospital employees. Patients are
responsible for providing necessary information for insurance claims and for working
with the hospital to make payment arrangements, when necessary.

A person's health depends on many more than health care services. Patients are
responsible for recognizing the impact of their life-style on their personal health.
Conclusion
Hospitals have many functions to perform, including the enhancement of health
status, health promotion, and the prevention and treatment of injury and disease; the
immediate and ongoing care and rehabilitation of patients; the education of health
professionals, patients, and the community; and research. All these activities must be
conducted with an overriding concern for the values and dignity of patients.


© 1992 by the American Hospital Association, One North Franklin Street,
Chicago, IL 60606.
Printed in the U.S.A. All rights reserved. Catalog no. 157759.
Copyright 1998, American Hospital Association




141


Appendix B: Pennsylvania Orders for Life-Sustaining Treatment (POLST)

142




143


APPENDIX C: LIVING WILL
I, _________________________________, being of sound mind, willfully and
voluntarily make this declaration to be followed if I become incompetent. This
declaration reflects my firm and settled commitment to refuse life-sustaining treatment
under the circumstances indicated below.

A. LIFE-SUSTAINING TREATMENT. I direct my attending physician to
withhold or withdraw life-sustaining treatment that serves only to prolong the process of
my dying, if I should be in an end-stage medical condition. I also direct my attending
physician to withhold or withdraw life-sustaining treatment that serves only to prolog the
process of my dying if I should be in a permanent state of unconsciousness. I direct that
treatment be limited to measures to keep me comfortable and to relieve pain, including
any pain that might occur by withholding or withdrawing life-sustaining treatment. If I
should suffer from severe and irreversible brain damage or brain disease with no realistic
hope of significant recovery, I would consider such a condition intolerable and the
application of aggressive medical care to be burdensome. I therefore request that my
Healthcare Agent respond to any intervening (other and separate) life-threatening
conditions in the same manner as directed for an end-stage condition or state of
permanent unconsciousness as I have indicated below.
(Please initial) I agree _______ I disagree ______
144


B. Nutrition And Hydration. If I have a condition stated above, it is my
preference NOT TO RECEIVE or TO RECEIVE (circle one) tube feeding or any other
artificial or invasive form of nutrition (food) or hydration (water).

C. OTHER REQUESTS. In addition, if I am in a condition or state described
above, I feel especially strong about the following forms of treatment:
I do ______ do not ______ want cardiac resuscitation.
I do ______ do not ______ want mechanical respiration.
I do ______ do not ______ want blood or blood products.
I do ______ do not ______ want any form of surgery or invasive procedures.
I do ______ do not ______ want kidney dialysis.
I do ______ do not ______ want antibiotics.
I do ______ do not ______ want chemotherapy.
I do ______ do not ______want radiation treatment.
I do ______ do not ______want to make anatomical gift of all or part of my body
subject to the following limitations, if any:

_____________________________________________________.
D. HALTHCARE AGENT DESIGNATION. I do want to designate another
person as my Healthcare Agent to make medical treatment decisions for me if I should be
145


incompetent and in an end-stage medical condition or state of permanent
unconsciousness. I hereby designate _________________________________________
currently residing at _________________________________________ as my Healthcare
Agent. If the person designated as my Healthcare Agent is not able to act, I designate
_________________________________________ currently residing at
_________________________________________.

I have read and understand the contents of this document and the effect of this
grant of powers to my Healthcare Agent. I am emotionally and mentally competent to
make this declaration.

Signed on ______ day of ____________ ______.


Signature: ____________________________________


Name: ________________________________________


146


Address: ______________________________________

______________________________________

County: _______________________________________

STATEMENT OF WITNESS
I declare that the person who signed or acknowledged this document has (1)
identified himself or herself to me, (2) signed or acknowledged this document in my
presence, (3) appears to be of sound mind, and under no duress, fraud or undue influence.
I am not the person appointed as healthcare Agent or Alternate Healthcare Agent by this
document, nor am I the operator of a community care facility, or an employee of an
operator of a healthcare facility.
I further declare that I am not related to him/he by blood, marriage, or adoption,
and to the best of my knowledge, I am not a creditor of him/her or entitled to any part of
the estate of him/her under a will now existing or by operation of law. Each of us is at
least 18 years of age.

Witness Signature: _______________________________________

147


Name: _________________________________________________

Address: ______________________________________________

_______________________________________________

Witness Signature: ________________________________________

Name: _________________________________________________

Address: _______________________________________________

______________________________________________




Abington Memorial Hospital. (2012). Advance Directives/Living Will and/or Durable
Power of Attorney. (Administrative Policy NO. 14.24). Abington, PA.
148


APPENDIX D: DURABLE POWER OF ATTORNEY FOR HEALTH CARE

A. DESIGNATION OF HEALTHCARE AGENT.
I, _______________________, of ______________________________, appoint

Healthcare Agent’s Name:

Address:


Phone: Home: _______________ Cell: _______________ Work: ______________

Relation, if any: ____________________

As my Attorney-in-Fact (herein referred to as my “Healthcare Agent”) to make
healthcare and personal decisions for me if I become unable to make such decisions for
myself, except to the extent I state otherwise in this document.

149


NOTICE: Generally you should not appoint any of the following persons as your
healthcare Agent:
1) your physician or healthcare provider unless the person is your relative by
blood, adoption or marriage;
2) an employee of your physician or healthcare provider, unless the person is your
relative by blood, adoption or marriage;
3) your residential care provider; or
4) An employee of your residential care provider, unless the person is your
relative.

B. CREATION OF DURABLE POWER OF ATTORNEY FOR
HEALTHCARE. By this document I intend to create a Durable Power of attorney for
Health Care. This power of attorney shall take effect upon my disability, incapacity, or
incompetency, and shall continue during such disability, incapacity or incompetency.

C. GENERAL STATEMENT OF AUTHORITY GRANTED. Subjected to
any limitations in this document, I grant to my Healthcare Agent full power and authority
to make healthcare decisions for me to the same extent that I could make decisions for
myself if I had the capacity to do so. In making any decision, my Healthcare Agent shall
attempt to discuss the proposed decision with me to determine my desires if I am able to
communicate in any way.
150


In exercising this authority, my Healthcare Agent full power and authority shall
make health care decisions that are consistent with my desires as stated in this document
or otherwise made known to my Healthcare Agent. If my desires regarding a particular
health care decision are not known to my Healthcare Agent, then my Healthcare Agent
shall make the decision for me based upon what my Healthcare Agent believes to be in
my best interests.
My Healthcare Agent’s authority includes but is not limited to the power to
authorize my admission to a medical, nursing, residential or similar facility, and enter
into agreements for my care, and the power to authorize medical and surgical procedures.
I authorize my healthcare Agent, to the extent permitted by law, to make decisions about
the withholding or withdrawal of life-sustaining treatment, including the withholding or
withdrawal of artificially provided nutrition and hydration.

D. ANATOMICAL GIFTS. _______ I authorize ______ I do not authorize
(choose one) my Healthcare Agent to make an anatomical gift of all or part of my body in
accordance with Pennsylvania law.

E. DESIGNATION OF ALTERNATE HEALTHCARE AGENT. If the
person designated as my Healthcare Agent is not available or unable to act or refuses to
act in accordance with my desires as stated in this document, I designate the following
persons to serve as my Healthcare Agent to make health care decisions for me as
authorized by this document, who serve in the following order:
151


FIRST ALTERNATE HEALTHCARE AGENT

Healthcare Agent’s Name:

Address:


Phone: Home: _______________ Cell: _______________ Work: _______________




SECOND ALTERNATE HEALTHCARE AGENT
Healthcare Agent’s Name:
Address:
Phone: Home: _______________ Cell: _______________ Work: _______________



152


GENERAL PROVISIONS
A. HOLD HARMLESS. All persons or entities who in good faith endeavor to
carry out the terms and provisions of this document shall not be liable to me, my estate,
my heirs or assigns for any damages or claims arising because of their action or inaction
or inaction based on this document, and my estate shall defend and indemnify them.

B. SEVERABILITY. If any provision of this document is held to be invalid,
such invalidity shall not affect the other provisions which can be given effect without the
invalid provision, and to this end the directions in this document are severable.

C. STATEMENT OF INTENTIONS. It is my intent that this document be
legally binding and effective. If the law does not recognize this document as legally
binding and effective, it is my intent that this document be taken as a formal statement of
my desire concerning the method by which any health care decisions should be made on
my behalf during any period in which I am unable to make such decisions.

I have read and understand the contents of this document and the effect of this
grant of powers to my Healthcare Agent. I am emotionally and mentally competent to
make this declaration.
Signed on __________ day of _______________, __________.

153



Signature: _________________________________________

Name: _________________________________________
Address: _______________________________________
County: ________________________________________
















Abington Memorial Hospital. (2012). Advance Directives/Living Will and/or Durable
Power of Attorney. (Administrative Policy NO. 14.24). Abington, PA.


154


APPENDIX E: Five Wishes





Towey, J. (2011). Five Wishes. Aging with Dignity. Tallahassee FL.
http://www.agingwithdignity.org/catalog/nonprintpdf/Five_Wishes_Final.pdf


155


APPENDIX F: The FAMCARE-2 Family Satisfaction Survey
VS - Very Satisfied S – Satisfied N – Neither
D – Dissatisfied VD – Very Dissatisfied NR – Not Relevant

How satisfied are you with: (Please circle your answers)
1. The patient’s pain VS S N D VD NR
2. The way the in which the patient’s condition and likely
progress have been explained by the palliative care
team VS S N D VD NR

3. Information given about the side effects of treatment
VS S N D VD NR
4. The way in which the palliative care team respects the patient’s
privacy VS S N D VD NR

5. Meetings with the palliative care team to discuss the patient’s
condition and plan of care VS S N D VD NR

6. Speed with which symptoms are treated VS S N D VD NR

7. Palliative care team’s attention to the patient’s description
of symptoms VS S N D VD NR
8. The way in which the patient’s physical needs for comfort
are met VS S N D VD NR

9. Availability of the palliative care team to the family
VS S N D VD NR
156


10. Emotional support provided to family members by the
Palliative Care Team VS S N D VD NR

11. The practical assistance provided by the palliative care team
(e.g. bathing, home care, respite) VS S N D VD NR

12. The doctor’s attention to the patient’s symptoms
VS S N D VD NR
13. The way the family is included in treatment and care decisions
VS S N D VD NR
14. Information given about how to manage the patient’s symptoms
(e.g. pain, constipation) VS S N D VD NR

15. How effectively the palliative care team manages the patient’
symptoms VS S N D VD NR

16. The palliative care team’s response to changes in the patient’s
care needs VS S N D VD NR

17. Emotional support provided to the patient by the palliative
care team VS S N D VD NR

Thank you for taking the time to help us improve our services.



Aoun, S., Bird, S., Kristjanson, L. J., & Currow, D. (2010). Reliability testing of the
FAMCARE-2 scale: Measuring family carer satisfaction with palliative care.
Palliative Medicine, 24(7), 675.

157


APPENDIX G: DREXEL UNIVERSITY INTERNAL REVIEW BOARD


158


APPENDIX H: ABINGTON MEMORIAL HOSPITAL INTERNAL
REVIEW BOARD


159



160





161








162


APPENDIX I: THE FAMILY GOAL SETTING MEETING PROCEDURE
1. Preparation (30-60 minutes)
 Review chart-know all med issues: treatment course, prognosis, options
 Review Advance Care planning documents (Advance Directive, Durable
Power of Attorney)
 Review/obtain family psychosocial issues; keep open mind re: reported
conflicts
 Coordinate medical opinions among consultant physicians
 Clarify your goals for the meeting (what decisions are you hoping to achieve)
 Decide who you want to be present from the medical team
 Check your own emotions

2. Establish proper setting (5 minutes)
 Private, comfortable
 Everyone seated-circle seating, if possible

3. Introductions/Goals/Relationship (10 minutes)
 Allow everyone to state name and relationship to patient
 Identify if there is a legal decision-maker (POA, Guardian)
 State your goals for the meeting; ask family if they have other goals
 Ask non-medical question about patient to build a relationship: Can you tell
me something about your father?

4. Family understanding of condition (10 minutes)
 Tell me your understanding of the current medical condition
 Encourage all present to respond
 For patients with a chronic illness, ask for a description of changes in
function (activity, eating, sleep, mood) observed over past weeks/months

5. Medical review/summary (10 minutes)
 Summarize “big picture” in a few sentences-use “dying” if appropriate
 Respond to specific medical queries, if asked

163


6. Silence/reactions (5 minutes)
 Respond to emotional reactions; Be prepared for common questions as:
 How long? What do we do now? How can you be sure?
7. Prognostication (5 minutes)
 If appropriate/necessary, provide prognostic information using ranges
 Allow silence; respond to emotional reactions

8. Decision-Making (10 minutes) (Go to 9. If no decisions need to be made)
 Review options, make a recommendation, assess reaction
 Decisional Patient: “What decision (s) are you
considering?”
 Non-Decisional Patient: “What do you believe the
patient would choose if s/he were here?”
 If consensus is reached, summarize and confirm
 If no consensus, mutually decide on specific time-limited goals

9. Goal setting (15 minutes) (Go to 10. If goals were established in 8.)
 Allow family/patient to state their goals; “Knowing that time is short,
what is important in the time that is left?”
 Review all current and planned interventions-make recommendations to
continue or stop. If appropriate, discuss artificial hydration/feeding/DNR
orders, etc. with clear recommendations.
 Summarize all decisions made

10. Document and discuss (20 minutes)
 Who was present and what decisions were made and follow-up plan
 Discuss with relevant team members (consultants, nurses etc.)
 Check your emotions





Medical College of Wisconsin. (2010). Retrieved from http://www.CAPC.org/

164


Appendix J: DATA COLLECTION SHEET
Subject # ______________ PCT-led Family Meeting Y ___ N ___

AA Race Y ___ N ___ Meeting Date _____________

Age of Patient __________ Advance Directive Y ____ N____

Patient has Capacity Y____ N ____ Decision on AD Restorative ____

Comfort ____
Surrogate Medical Decision Maker Gender M ____ F ____

Kinship ____ (see key below)

Care Pathway Decision BEFORE Meeting Restorative ____
Comfort ____

Care pathway Decision AFTER Meeting Restorative ____
Comfort ____

__________________________________________________________________
Kinship Key:
1. Wife 2. Husband
3 Adult Daughter 4. Adult Son
5. Mother 6. Father
7. Adult Sister 8. Adult Brother
9. Adult Granddaughter 10. Adult Grandson
11. Adult Niece 12. Adult Nephew
13. Adult Female Friend 14. Adult Male Friend
________________________________________________________________________


165




166


Table 2: Data Coding Key

Raw Data Key
FM Led By Age AD AD Decision Surrogate Gender
Y=1 MD=1 # Y=1 Restorative=1 M=1
N=0 DO=2 N=0 Comfort=2 F=2
NP=3

Kinship Pathway Before Pathway After
Wife=1 Restorative=1 Restorative=1
Husband=2 Comfort=2 Comfort=2
Adult Daughter=3
Adults Son=4
Mother=5
Father =6 LOS in Days Patient Religion
Adults Sister=7 # Baptist=1
Adult Brother=8 Protestant=2
Adult Granddaughter=9 Lutheran=3
Adult Grandson=10 Catholic=4
Adult Niece=11 POA None Documented=5
Adult Nephew=12 Y=1 Agnostic=6
Adult Female Friend=13 N=0 PE=7
Adult Male Friend=13 Christian=8
Jehovah’s Witness=9
Episcopal=10
Medical Insurance Other=11
Medicare=1 Patient’s Gender
Keystone=2 M-=1
Aetna=3 F=2
Medical Assistance=4
Other=5
Self-Pay=6
Blue Cross=7
167


Table 3: Data Processing and Analysis


VARIABLE What is Collected/Measured Analysis
 End-of-life
decision made
by medical
surrogate
decision-maker
 PCT-led family
meeting
Documented decision for end-of-life
care pathway following the PCT-led
family meeting (found in EMR:
DOCUMENTS tab; PCT-led Family
Meeting note)
 Aggressive, curative,
restorative care pathway
 Comfort focused, quality of
life care pathway

Descriptive Statistics

 Central tendencies
 Frequency distributions
 Mean, Mode, Median,
Frequency, Distribution,
Range, Variance, Standard
Deviation, Central
Tendencies

Inferential Statistics
 Pearson Chi-Square

 End-of-life
decision made
by surrogate
medical
decision-maker
 AD as a Living
Will and DPOA
Compare:
 The medical surrogate’s
documented decision for end-
of-life care pathway (found in
EMR: DOCUMENTS tab;
PCT-led Family Meeting
note)
 The patient’s own declared
wishes as documented in
her/his AD, as a Living Will
and DPOA (found in EMR:
REPORTS OF
OPERATIONS tab)
Descriptive Statistics (as above)

Inferential Statistics
 Pearson Chi-Square
-patient wishes on
LW/decision for care
pathway


 End-of-life
decision made
by medical
surrogate
decision-maker
 Socio-
demographic
factors
Documented decision for end-of-life
care pathway (found in EMR:
DOCUMENTS tab; PCT-led Family
Meeting note) correlated with
characteristics of patient/surrogate
 Age of the patient (found in
EMR: PATIENT PROFILE
tab)
 Gender of the medical
surrogate (found in EMR:
PATIENT DATA BASE tab)
 Kinship to patient of the
medical surrogate found in
EMR: PATIENT DATA BASE
Descriptive Statistics (as above)

Inferential Statistics
 Pearson Chi-Square
-surrogate kinship/decision
for care pathway
-surrogate gender/decision
for care pathway

 ANOVA
-patient age/decision
for care pathway


168



Vita
Maria Doll Shaw, DrNP, MS, RN-BC


EDUCATION
Drexel University, Philadelphia, PA, Doctor of Nursing Practice 2015
London, England, International Education Study Abroad Experience 2012
Villanova University, Villanova, PA, Master of Science in Human Organizations 1992
Holy Family University, Philadelphia, PA, Bachelor of Science in Nursing 1982
PROFESSIONAL EXPERIENCE
Abington Health, Abington, PA
 Clinical Nurse Manager: Palliative Care Services 2013 - Present
Abington Memorial Hospital, Abington, PA
 Clinical Nurse Liaison: Surgical Services 2012 - 2013
 Clinical Nurse Specialist: Anesthesia Pain Management 1992 - 2012
Wicks Educational Associates Inc.
 Certification Examination Proctor 2014 - Present
Presbyterian Medical Center, Philadelphia, PA
 Administrative Intern for VP of Medical Services Fall, 1990
Thomas Jefferson University Hospital 1982 – 1992
 Staff Nurse: Short Procedure Unit
 Clinical Nurse III : Neurology, Neurosurgery, ENT, Orthopedics
 Pharmaceutical Research Assistant
Quarterdeck Incorporated: Vice President 2004 – Present
CERTIFICATIONS, AWARDS and INTERESTS
 Independence Blue Cross Foundation: Nurses for Tomorrow Graduate Scholarship, 2011, 2013
 ANCC Board Certification: Pain Management Nursing 2005 - Present
 Best Practices for front Line Leaders, 2005, Update, 2014
 American Heart Association Basic Life Support Instructor 1995 – Present
 Member: American Society for Pain Management Nursing
 Member: Hospice and Palliative Care Nurses Association
 American Cancer Society Volunteer

169











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