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Grief Perspectives
Scholar's Corner
Resource Review
Your Professional Library

Asking Questions at the End of Life

by William G. Hoy

This past week, my wife Debbie was out of state providing companionship and care to a dying friend. We were just leaving Greenville, SC the morning of September 13 where we had both just spoken the day before when Deb’s phone rang and our friends delivered the news of what we would learn was widely metastatic pancreatic cancer; our friend is almost surely in the last weeks of her life now. In the context of Deb’s visit at one point, our friend said, “I just feel bad that you drove all this way to be with me; that is such a hard trip.” Deb told me that before she was able to edit her response, the words that “hopped out” were, “What is hard for me is that you are dying.”


To some, those might be shocking, abrupt words. Of course, Debbie is married to me…so no one would be shocked she would be so forthright about death! But interestingly, our friend was not “put off” by such frank conversation, either. In fact, throughout the days Deb was there they talked candidly and often about death, the losses that come for all of us before she dies, and the losses we will most certainly feel in her death’s aftermath. This friend and her husband are two of our dearest friends; we have built a deep relationship during the three years or so they lived here in central Texas before their recent move. Caring for them is one of the sweetest opportunities Debbie and I are having, desperately hard as these days and weeks are.
But I am being reminded several times every week that the work we do in caring for the dying and grieving really matters. Despite the great biomedical care they are getting at one of America’s premier cancer centers, I see little evidence they are getting good psychosocial-spiritual care. Few people among the health care team are asking questions as much as they are making statements.
Good psychosocial-spiritual care is not difficult but it does require a high level of intentionality. These are the questions I “dusted off” for our friend’s family to use in carrying on family conversations; I was reminded again how frequently they have been helpful for me in guiding the conversations I have had through the years with dying persons and their families. This is excerpted from a paper I wrote several years ago entitled “Promoting Conversations at the End-of-Life.” I hope they are useful.
If a patient seems resistant to talk, some of these questions can be modified into a yes/no framework but I don’t recommend defaulting to this position too quickly. You might be surprised at how often a question asked today will evoke a response tomorrow or next week. Remember that all of us need different amounts of time process. Some of these questions will be very challenging for the patient who is not in the habit of reflective thought.
Be patient with your patient. Give him time to process, be silent, contemplate, or to provide a brief answer today to be followed up tomorrow. I have been amazed how often I have been with a patient who starts our conversation by saying, “You know, when you were here last week, you asked me…I have been thinking about that.”
  • What do you find most important, interesting, or unique about your family as you were growing up? How do you think a family today would be better or worse for being like yours?
  • Will you tell me one of your favorite stories from your childhood or adolescent years? What do you think made that experience so memorable?
  • As you reflect on the last few years, what are you most grateful for? Will you explain a bit to me about how that gratitude emerged for you?
  • If you could choose three or four character traits to pass on to your family or friend group, what would those be? (These might include words like honesty, passion, generosity, hopefulness, faithfulness, or dependability. I like this question better than the oft-used “How do you want to be remembered?”)
  • If you have thought much about what comes after death, how have you imagined it? Does your faith tradition provide any guidance for your expectations? 
  • What do you think is ahead for you? (When patients respond with, “The doctor says I have three or four months,” I try to respond with something like, “So what does your gut tell you about that?”)
  • Who do you suppose is the person who had the greatest impact on your life? What did he or she do or how did he or she model life that became so impactful for you? If you had to guess, to whom have you passed on some of that impact?
  • What does it mean to have “dignity” or “quality of life?” What does life need to include or not include in order for you to feel it has quality?
  • Besides the people you see and interact with regularly, who are the people (if any) you most want to reconnect with right now?
  • Of all the things that are probably frightening right now, what do you suppose is the scariest for you?
  • What are your greatest hopes and fears for the people who will live on after your death?
  • What is one thing you would like to say to each of your family members or close friends?
  • At this point, does God seem to you to be far off, close at hand, or somewhere in between?
  • What is the best word of advice you have ever gotten from someone? What word of advice would you most like to pass along to the next generation?
  • What has been the biggest surprise about the way your family and friends have dealt with your illness? What has most disappointed you about the responses? 
  • If you could write a brief paragraph to be read at your funeral, what would you want it to say? Can I help you write it, and if so, would it be alright if somebody read it?
  • How is your experience in dying like and different from what you imagined before you became ill?
  • How do you think your perspective of God/faith/purpose has changed during your illness?
  • Will you tell me about the best award or proudest accomplishment in your life? 
  • What is the book, song, or movie that you have most enjoyed? What has made it so memorable for you?
Especially for Family Members/Caregivers…
  • What frightens you most about caring for your (mom/husband)? What resources do you think you need to do this well?
  • In what ways do you see caregiving as a privilege instead of a burden? Though it is likely the hardest work you have done, what is the most rewarding part about it?
  • How do you think your faith/belief system has been transformed, challenged, or strengthened so far by this experience?
  • What do you wish the health care system/your physicians/other professionals would do differently in caring for patients? In what ways have these professionals been most effective for you and your family?

Our friend and her husband told us by phone today that she had more energy and felt good enough for a brief drive to the library to pick up some recorded books. Though very grateful, they neither one seem clear about why she has a bit more energy today. I strongly suspect it is that in the meeting with their oncologist yesterday, they say they talked frankly for the first time with their oncologist. For the first time, our friends said they felt like they got real answers about what to expect. Honestly, they learned a few of the questions and prompts for that conversation with their physician from Debbie’s modeling at physician visits and coaching before the visit, reminding me how important advocacy are. Could it be that the future is less frightening when we know more about what is ahead? Is it possible that frank discussion about a future that includes no cure actually produces more hopethan grappling with the ambiguity that comes from “fretting and guessing” on the part of patient and family?
Regular readers of this newsletter likely know what my answer is to those questions. I believe that more often than not, dying people have a deep, abiding awareness that death is coming, even when they do not comprehend specifics and even when their families refuse to acknowledge it. Perhaps for the first time in her own illness, our friend is energized, in part at least, by knowing that there is no need to keep the conspiracy of silence any longer.

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
Many years ago, the National Hospice & Palliative Care Organization (NHPCO) determined the need for a family-based resource website; was the result. With resources in advance care planning, caregiving, hospice services, and grief/bereavement, it is an excellent starting point for families contemplating hospice/palliative care as well as those grappling with caregiving responsibilities. All resources are provided free of charge.
Your Professional Library
Like its predecessors, the third edition of Stephen R. Connor’s Hospice and Palliative Care: The Essential Guide (Routledge, 2018, US $ 44.95) does not disappoint.

Dr. Connor, executive director of the Worldwide Hospice & Palliative Care Alliance brings a global understanding of hospice principles to bear in this volume as he discusses basic hospice principles, proven methods of providing hospice care in low resource areas, and how interdisciplinary groups function effectively.

Chapters in the book systematically discuss how pain and physical symptoms are managed, challenges and interventions in psychosocial and spiritual care, bereavement, community education, and leadership/management issues. Then, Connor tackles the thorniest of issues such as how hospice figures in current health care financing debates, right to die, and quality assessment of hospice programs.
Overall, this is a very fine resource guide that explains the field well. Especially for those unfamiliar with hospice concepts or new to the field, it is a must-have reference.
Research that Matters
Guo, Q., Chochinov, H.M, McClement, S., Thompson, G., & Hack, T. (2018). Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed methods study. Palliative Medicine, 32(1), 195-205. doi: 10.1177/0269216317734696
When Canadian palliative care psychiatrist Harvey Chochinov first began discussing his notion of “dignity-conserving care” in the mid-90s, psychosocial professionals in end-of-life care rejoiced. In the first place, a physician was providing scientifically-validated affirmation to the practices many of us had been observing for decades. Second, Chochinov’s resulting “dignity therapy” provided another evidence-based intervention in which trained caregiving professionals conversed with dying individuals, recorded their interview, had the interview transcribed, and finally, worked with the patient to produce a final document of reflections, hopes, and messages-to-be-passed-on for survivors.
Much of the dignity therapy model, unfortunately, depended on the availability and resources of trained professionals. As anyone working in this field knows, however, conversations within families and opportunities for patients to “tell their story” cannot be limited to interactions with professionals. Enter the present study where the principles of Chochinov’s original studies have been adapted to use in questions within families of dying patients.
These researchers interviewed 20 patients, 20 family caregivers, and 34 health care providers to assess the clarity, sensitivity, relevance, and importance of “dignity questions.” An important point is that a higher overall endorsement of the questions came from patients than family members for nearly all 11 of the dignity talk questions. The lower levels of endorsement of the family members might imply that family members are more reluctant to discuss end-of-life issues, that family members feel “protective” of their dying loved ones, or that patients are simply more open about their own dying than family members are. More research is needed to clarify how these factors and others might be significant.
Patients and family caregivers noted the generally respectful tone of the questions while affirming the importance of plain language. Some of the health care professionals pointed out the negative outcome of numbering questions in that such system implied rigidity and the need to move through the questions in a prescribed order.
In the research study, each participant was given a card with a brief explanation of the value of talk and its usefulness in providing comfort; the instructions reminded participants: “Some conversations you may choose to have; others you may decide to skip altogether. There are no right or wrong answers” (p. 203). Then, participants turned the card to the reverse side where they found each of the questions being studied along with the general life arena to which they applied. Here are the questions as presented on the card’s reverse side:
MEMORIES - Looking back on life, are there particular memories or moments we might want to talk about?
THINGS ABOUT YOURSELF - Are there things about yourself that you want us to talk about?
SPECIAL ROLES - Are there special or important roles in your life that you would like to talk about? (What made those roles special? Which of those roles made you feel proud?)
WHAT YOU MEAN TO ME - Would you like to talk about what we mean or have meant to each other?
REGRETS - Would you like to talk about any regrets?
FORGIVENESS - What about forgiveness? Are there things you want to forgive, or be forgiven for?
GRATITUDE - Would you like to talk about things we feel grateful for?
HOPES AND DREAMS - Would you like us to talk about hopes and dreams for people who are important to us? (Family, friend, others?)
WHAT WE’VE LEARNED - Would you like to talk about the things life has taught us, or perhaps what we have taught one another?
ADVICE - Are there words of advice you might like to share with special people in our lives? (Family, friend others?)
MORE TO DISCUSS - Are there things that we still want or need to discuss with each other?
MORE TO BE SAID - Are there things we still want or need to say to each other?
The article is available for free download from the National Library of Medicine 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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