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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 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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i 
 
 
 
 
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. 
64 
 
 
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). 
 
68 
 
 
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. 
 
69 
 
 
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 
70 
 
 
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) 
 
 
72 
 
 
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). 
 
81 
 
 
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 
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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 
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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.  
 
91 
 
 
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.  
92 
 
 
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 
93 
 
 
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, 
94 
 
 
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 
95 
 
 
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 
97 
 
 
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. 
 
 
 
 
 
 
 
 
 
 
 
 
102 
 
 
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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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