GriefPerspectives
 

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).

Many years ago, the National Hospice & Palliative Care Organization (NHPCO) determined the need for a family-based resource website; www.CaringInfo.org 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.