Destigmatizing Death: Engaging Healthy Emerging Adults in End-of-Life Conversations through an Undergraduate Palliative Care Curriculum Público
Kulp, David (Spring 2020)
Abstract
Western culture proliferates the myth that conversations about palliative care and death can only occur at the end of life. Typically, such communication does not occur until it is too late—after life-limiting conditions present. However, dialogue about these difficult topics proves to be a crucial component of development in emerging adulthood (18-23-years old). Emerging adults are not immune to terminal illness, and many eventually become substituted decision-makers for their loved ones, forcing them to confront end-of-life decision-making. According to recent statistics released by the Centers for Disease Control, each year more than 11,000 adolescents and young adults (15-34-years-old) die from chronic illnesses. To decrease anxiety and fear about the end of life, the American Academy of Pediatrics and World Health Organization recommend having conversations with terminally ill children and emerging adults about decision-making as soon “as they are developmentally and emotionally ready” (Pao and Mahoney 511; Wiener et al. 898). However, despite these statistics and recommendations, end- of-life conversation is largely avoided with healthy emerging adults.
This honors project assesses the efficacy of a palliative care curriculum recently piloted for undergraduates at Emory University. Early interventions in educational settings—relying on resources typically used in advance care planning—may prove important in empowering healthy emerging adults to make well-informed decisions about their end-of-life care. While there is currently a wealth of literature showing the importance of end-of-life conversations with young adults suffering from terminal illnesses, the research—quantitative and qualitative—about communication with healthy emerging adults is lacking. This honors thesis bridges that gap by gauging both the pragmatic awareness of planning tools, and the effectiveness of an undergraduate curriculum focused on humanistic discussions about death.
As explored in the results, the foundations of palliative care—and its academic intersection at the nexus of humanities and science—play a key role in educating emerging adults about decision- making at the end of life. With an interdisciplinary emphasis, an undergraduate course is ideally positioned in the life of an emerging adult to discuss future wishes and begin to catalyze a societal perspective shift towards the end of life.
Table of Contents
CHAPTER ONE: Introduction (pg. 1)
CHAPTER TWO: Evolution of Palliative Care in Pediatrics & Adolescence: A Literature Review (pg. 8)
The History of Hospice & Palliative Care Medicine 8
Dialogue about Death: Historical Stigma in Childhood & Adolescence 12
Conversations with Terminally & Chronically Ill Emerging Adults: Current Research 14
Advance Care Planning after Terminal Diagnosis in Emerging Adulthood 17
Gaps in Care: Lack of Provider Communications Training 19
Parental Processing, Decisional Regret, & Bereavement: Insight into Decision-Making & Ethics 23
Truth-Telling in Decision-Making: A Global Standard of Care? 25
CHAPTER THREE: Death Conceptualization in Child & Adolescent Cognitive Development (pg. 27)
Pediatric Psychological Development & Stages of Death Awareness 27
Contextualizing Death: Emotional Maturation in Adolescence & Emerging Adulthood 29
Early Perceived Death Amongst Healthy Emerging Adults 31
CHAPTER FOUR: Shifting Perspectives: Talking Death with Healthy Emerging Adults (pg. 33)
Healthy Emerging Adults & Advance Care Planning 33
Adapting Current Tools: Interventions with Terminally Ill Emerging Adults 34
Innovative Gaming: Engaging Healthy Individuals in Death Talk 37
Understanding Communication Amongst the Emory Undergraduate Population: A Feasibility Study 38
Institutional Review Board Approval 38
Methodology & Study Design 38
Limitations 39
Results & Findings 40
Providing Space: Potential for Future Sustained Undergraduate Engagement 42
CHAPTER FIVE: Development of an Emory Undergraduate Palliative Care Curriculum (pg. 43)
Collaboration with the Arthur Vining Davis Foundations 43
Grant Development at Emory University 44
Pilot Course Development & IDS 205W Implementation 46
CHAPTER SIX: Evaluation of IDS 205W: A Mixed-Methods Study (pg. 54)
Aims 54
Institutional Review Board Process & Approval 54
Methodology & Study Design 55
Demographics 55
Quantitative Results: Awareness of Palliative Care Terminology & Tools 56
Qualitative Results & Analysis: Course Content 57
Additional Information: ECAS Course Evaluation 67
Limitations 67
CHAPTER SEVEN: Discussion & Conclusion (pg. 69)
EPILOGUE (pg. 77)
APPENDIX A: Feasibility Study Survey Questions (pg. 79)
APPENDIX B: Feasibility Study Survey Results (pg. 81)
APPENDIX C: IDS 205W Evaluation Research Instrument (pg. 85)
APPENDIX D: IDS 205W Evaluation Study Results (pg. 87)
WORKS CITED (pg. 90)
About this Honors Thesis
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