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Grief Perspectives
Scholar's Corner
Resource Review
Your Professional Library

Conversing with Patients about Death

by William G. Hoy
A Note From Bill…
Most readers of this newsletter know of the continuing difficulties I have in writing for publication as the result of the head injury I sustained two years ago. Because of that ongoing deficit, this month and perhaps two or three other times this year, I will be “reprising” articles from a few years ago that seemed to “strike a chord” with our readers. Even though I don’t recall writing them (which of course tells the story of my working memory), I hope that you will be able to read them with fresh eyes (and hearts).


I write these words high above the North Atlantic Ocean on my way to the Netherlands to spend three months teaching and mentoring 36 of the brightest pre-medical students our university has to offer (I know, it is a tough job but someone had to do it!) My class schedule says I am addressing two subjects: “Suffering, Multiculturalism, and Health” and “History of Medicine.” I will join my pediatrician colleague Dr. Lisa Baker addressing these topics in the places where so many medical advances occurred; we will sit in Andreas Versalius’ anatomical dissection theater in Padua, Italy, and visit the home and lab of Louis Pasteur in Paris. Against the backdrop of these medical wonders we will contemplate early Christian suffering in Rome, the unspeakable experimentation and murder of six million Jews at the hands of Nazis, and the blood-soaked narratives of Normandy medics and field surgeons who barely escaped battle with their own lives as they fought to save the lives of others. To call the experience life-changing for both students and professors seems to be, well, a significant understatement.
After 26 years actively counseling individuals in both congregation and hospice coupled with these most recent five years as an “academic immigrant,” in the halls of a major research university, I have now realized just how unequal to the task I am. My pediatrician colleague reminds me I have been preparing for this semester for the 55 years of my life (or at least the 31 years of my career). She is right, of course. As I consider the task more deeply, however, I realize that my education, counseling training, or even continuing professional development has not prepared me for this semester. Rather, the preparation has come from the hundreds (probably thousands to be precise) of patients who have graciously and patiently taught me what it means to suffer in the face of often unspeakable tragedy.
Personally, I have struggled this summer and face surgery when I return to the U.S. to correct a femoral acetabular impingement, meaning my right hip joint does not operate properly. Where I come from, we say “He has a hitch in his git-along.” However, I am reminded that the real suffering I have seen is not my own pain but that of my Kenyan friends for whom pain relief and a return to orthopedic mobility is not even a dream but who speak convincingly of the power of God that enlightens their lives and provides hope anyway. That is a humbling consideration.
Against the backdrop of this trip, I joined my wife’s family just three weeks ago as we bade farewell to her father, William E. Coffey, Sr., the man who has played the role of surrogate dad to me since my own father died 23 years ago. Through his dying in one of Texas’ finest medical institutions, I realize just how far we have to go in facilitating “conversations” between the seriously ill and their families. In his case, most of the health care team performed in a stellar way while one physician delivered some of the worst patient care I have witnessed in my more than three decades in this work. Colleagues attending seminars in California and Pennsylvania in the days since his death have patiently heard me rant about that experience. Above all, however, I have been reminded afresh that knowing a lot about end-of-life care and bereavement does not provide a “pass” when we walk through it for ourselves in our own families. As I have gathered all of these experiences together in my mind—Kenya in May, “Grandpa’s” death in July, and Europe this fall—three important thoughts have continued to surface; these seemingly disparate experiences and this meandering article do come to a single point! I share these thoughts with the hope that they will remind us all about the important work we do with patients and their families at end-of-life.
Honesty with patients is essential. Under the guise of helping patients maintain “hope,” health care professionals and families often collude to shelter patients from the full onslaught of truth-telling in diagnosis and prognosis. While “informed consent” is now a deeply cherished value in western health care, there are many opportunities to offer “shades” of truth, especially easy to do when glossing over negative side effects to a particular treatment or intervention. Far from “stealing a patient’s hope,” frank end-of-life conversations between patients with advanced cancer and their physicians have been shown to result in better mental health outcomes (Volandes, 2015; Wright,, 2008). I participated in this scenario as I watched one generalist physician in my father-in-law’s care consistently hold out false hope to both patient and family in the face of clear evidence to the contrary. Thankfully, his cardiologist was far more realistic or his death would have been far from peaceful.
Physicians are team leaders but not lone rangers. Increasingly tearing a page from the hospice playbook, health care seems to be acknowledging the truth most readers of this newsletter already know: the best health care for patients results when professionals from the disciplines of medicine, nursing, pastoral care, social work, and allied therapies (respiratory, nutritional, physical, etc.) work collaboratively in the patient’s care. Not nearly all pain will be relieved with even our best narcotics; sometimes the simple dialogue of asking questions and patiently listening to story is what works healing.
Angelo Volandes’ outstanding perspective (reviewed below) notwithstanding, physicians are rarely the best individuals to carry on deep, meaningful conversations with patients and families facing serious illness. Patients want to hear from their physicians and they appreciate the expertise doctors bring. However, patients are helped immeasurably when physicians honor the gifts and abilities of the other disciplines, utilizing the expertise of chaplains and social workers, for example, to take the lead in many of these conversations while the physician provides a listening presence and additional medical information as the conversation unfolds.
Acknowledge the huge strides already made. Far too many patients die in ways and places very different from what they would choose if given the opportunity. The continuing onslaught of reminders that we are not doing enough for dying patients can make one wonder whether we have made any progress. Most certainly there are anecdotes—like one physician who refused to hear my father-in-law’s plaintive cry to “let me go.” But such stories obscure the plain fact that more people today talk about choices related to end-of-life options than ever before. Students in virtually every health care training program—medical school, nursing school, and allied health—are more likely to participate in a palliative care rotation than would have been the case just a few years ago. Patients, families, and health care professionals are having conversations with far more regularity than just a few years ago. The plain truth is that things are not as good as we hope but neither are they as bad as they once were.
While much of my work now focuses on training the next generation of physicians, I believe we all have a vital role to play in facilitating these conversations. Social workers and chaplains specifically, the people on the front lines of the “behavioral health side of the aisle,” as I frequently call them in my seminars, are the individuals who day-in and day-out do the best job of engaging in meaningful dialogue with the seriously ill, the dying, and their families. Those of us who practice in those disciplines must redouble our efforts in becoming the best possible professionals we can in these important arenas at end-of-life, even when those contributions often go unnoticed by the institutions in which we are employed. The book review, research report and web resources below provide important direction for our mutual work of engaging patients and even our own families in these vital conversations.
Volandes, A.E. (2015). The conversation: A revolutionary plan for end-of-life care. New York, NY: Bloomsbury.
Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., . . . Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. Journal of the American Medical Association, 300(14), 1665-1673. doi:10.1001/jama.300.14.1665

The Author: For more than three decades, William G. Hoy has been counseling with the bereaved, supporting the dying and their families, and teaching colleagues how to provide effective care. After a career in congregation, hospice, and educational resource practice, he now holds a full-time teaching appointment as Clinical Professor of Medical Humanities at Baylor University in Waco, Texas where he has taught since 2012. His most recent book is Bereavement Groups and the Role of Social Support: Bridging Theory, Research, and Practice (Routledge, 2016).

Resource Review
The internet is replete with useful resources to support dialogue and conversation with patients considering options for end-of-life care. Like many of my colleagues, I maintain that the best conversations, however, begin long before there is a health crisis potentially demanding decisions about end-of-life options. That is one reason I teach students to ask the question in well-check interviews with patients, “There is a lot of talk in the media these days about how things should be improved for people when they are dying. I’m curious; the last time somebody died in your family, how did it go? How would you like your own death to be similar to or different from that experience?”
Aging with Dignity ( is one of those organizations that embrace this philosophy. Developer of the famous Five Wishes, AWD has been influential in starting conversations in tens of thousands of families.
Have the Talk of a Lifetime ( is a collaborative site of the member organizations of the Funeral and Memorial Information Council. Their website and corollary materials utilize the individual’s “life story” as a springboard to conversations about values for end-of-life care and how the individual hopes to be remembered (legacy) in the lives of family and friends.
Canadian readers will especially appreciate the resources available from the Quality End-of-Life Care Coalition of Canada (, an association of more than two dozen national organizations dedicated to improving hospice palliative care and other end-of-life options for Canadians. Now midway through implementation of its Blueprint for Action 2010-2020, the organization’s website offers a multitude of resources.
In conversations about end-of-life care—whether in the “abstract” with healthy individuals or in the concrete life-and-death reality of those considering such things as DNR declarations or termination of mechanical ventilator support, an understanding the values of patient and family become paramount. It seems our job as professionals in this context is to help patients clarify those value statements and to assist in communicating them to other family members.
Your Professional Library
Volandes, A.E. (2015). The conversation: A revolutionary plan for end-of-life care. New York, NY: Bloomsbury. (Paper, US $ 16.00)
In this provocative discussion of end-of-life care, Angelo Volandes deftly weaves together patient case reports with research into the ways people die and the ways many wish they could die if only their health care providers and families were willing to engage in conversation. Volandes writes, “The dizzying array of decisions that must be made as people with a serious illness approach the end of their lives is part and parcel of a modern American (and likely Canadian) death. What people need most on this journey is not the promise of the next new technology but rather a guide to help navigate the dark forest in which they will undoubtedly find themselves” (Volandes, 2015, pp 5-6).
Many such books take pot shots at physicians and other health care professionals, all the while celebrating the author’s own skills at interacting with patients and families. However, this physician-author owns his own mistakes, honestly declares his misgivings, and confesses the errors of judgment that have kept him awake into wee hours. The author patiently explains what can be done to make the end of life better for patients, all the while acknowledging these are not easy decisions for patients, families, or health care professionals.
Entitled “If a Picture is Worth a Thousand Words…,”the fifth chapter is especially poignant as Dr. Volandes explains his decade-old project of creating videos to better educate patients and families on end-of-life options. He tells the story of interviewing family members, health care staff, medical colleagues, and even patients. Ploughing his young adult experience in film into his work of doctoring, the tales of producing the video are chock full of humor and meaning. Of most interest to clinicians, the videos have been the subject of several randomized control trials to measure their effectiveness in facilitating conversations with patients and families with very promising results.
Rounding out the book, Chapter 6 offers the author’s perspective on his own father’s illness and decision to become DNR (Do Not Resuscitate), much to the author’s own surprise. Dr. Volandes tenderly weaves the story of his own father’s stroke and continuing health care challenges with the story of Lilian, a young mother who with her husband, decide to “keep trying” to beat her widely metastatic breast cancer. Then, more than two dozen pages of resources, questions to start conversations, and other reading materials follow the main text.
I found this book accidentally but it is a keeper. It has not only made its way onto my bookshelf; it is also going to be required reading in my course on end-of-life care for pre-medical students. Volandes speaks with a credible and compassionate voice that needs to be heard in our generation—not just by budding physicians but by every professional and volunteer in the health care enterprise. Moreover, there is much here for all of us who are spouses, children, parents, and friends, not only as we learn to provide better care professionally but as we also discover how to carry on real conversations about end-of-life options with those we love most.
Research that Matters
Garrido, M. M., & Prigerson, H. G. (2014). The end‐of‐life experience: Modifiable predictors of caregivers' bereavement adjustment. Cancer, 120(6), 918-925. doi:10.1002/cncr.28495
As part of the longitudinal Coping with Cancer study, these researchers used baseline interviews with patients and their informal caregivers (generally family) as well as interviews with caregivers six months following the patient’s death. Not surprisingly, better caregiver mental health prior to the patient’s death was associated with better bereavement outcomes (i.e. less depression and anxiety) at the post-death assessment. DNR completion and longer hospice stays were also associated with better outcomes, leading readers to possibly conclude that these factors are perceived as an improvement in the “quality of death.” That patients had completed DNRs and lived for more days in hospice care may be associated with higher quality of conversations between patients, family members, and health care professionals, as well.
The study authors suggest that family perception of patient suffering may be more important than the actual end-of-life care interventions received. Since most caregivers seem to value knowing what to expect as a patient’s death approaches, teaching caregivers about the dying process and various care options may improve perceptions of care and bereavement adjustment. The full text of this study is available as a free PDF download here.
GriefPerspectives is published monthly by Grief Connect, Inc. Copyright ©2017. All rights reserved, including publication or distribution in any form, electronic or printed. For reprint permissions or suggestions for content, please email us at
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