What have you learned from dying people that has surprised you the most?
The way that health-care providers and doctors talk to patients causes them more pain than the disease itself. As I've spoken about this study to varying audiences, nonmedical audiences are often surprised that I'm surprised because it seems to be so common.
How often did you see people use their final months time to deepen and improve relationships?
The will to do that was certainly present in the participants. Many said, "I'm saying things to you that I've never said to anybody, and I wished I could." And some said, "We'd like you to write a book, and we know you have to disguise us. Don't disguise us so much that our families won't recognize us, because perhaps they'll come to an understanding of who we are."
What are the most important things that the public needs to know about pain management and palliative care?
Physical pain becomes the focus of existence. It obscures the psychological and spiritual concerns of the individual. But 85 to 95 percent of pain can be controlled, and people can be clear-thinking and participate in relationships.
It's important that physicians, nurses, and other health-care professionals understand pain management, as well as management of other symptoms—whether it's shortness of breath, nausea and vomiting, constipation, or diarrhea. Whatever the symptom, there is now a whole body of knowledge to make sure people are as comfortable as they could be.
What kinds of pain are you not able to medicate?
In the book I talk about the a ha moment I had when I realized that one woman's pain had to do with estrangement between her and her daughter. You can't medicate that. It's psychological/spiritual suffering and pain that people experience that we can't medicate.
There's also the fear that health-care professionals would abandon them. And the sense of loneliness. The myriad emotions that we experience in our lifetime might be exaggerated once we know that we have a terminal illness. These can't be medicated.
What spiritual or religious issues are most important to dying people?
Perhaps I could say what's not important. People in the study told me that religious or denominational perspectives became less important as the sense of God became greater nearing the end of life. And people would also say, "It doesn't matter so much any more what you name that power, that being. What's remarkable is the sense of a greater-than-self source of strength that comes from within us as we do the work."
What spiritual or religious issues seem most important to the friends and family of dying people?
From my clinical observation, I think friends and families long to have the person that's dying be in a peaceful state.
Many pastors are uncomfortable working with people during their final months. What advice do you have for them?
You can have incredibly peaceful dying, and you can also have painful dying. People die as they have lived.
My sense for pastors is twofold. One is to work to respect the journey of the person dying. While we will never eliminate suffering, we can reduce its impact by simply being in the presence of another. And then work hard to understand that experience from the perspective of the other. There's a danger in thinking If this were me, because it's not you. Until we're told that we have a terminal illness, we don't really know what it feels like.
Second, go on your own inward journey of confronting mortality. Ask, What will be the experience of those I love when I'm not here? What will the world be like without me in it? That's an existential fear. If I can go there, I can probably sit in on the process of other people asking the same questions.
Physicians used to keep information about terminal disease from patients. You advise physicians to give patients truth, time, and touch.
The silence that came from physicians had to do with their sense that [talking about dying is] taking all hope away from people. But truth and hope are not mutually exclusive.
After the study I would say to people who have a terminal illness, "I'm going to hold one hope for you, the hope of a cure, if that's what you want. Now let's look at all the other hopes: Hope to have the courage to speak your truth. Hope to have the courage to listen to the truth of others that you care about and that care about you. Hope that the people that provide care for you will help to control your pain and other symptoms. Hope that you might not be alone. "What are your other hopes?"
If we can hear those hopes, it will alter our grieving. To know that Uncle Charlie got what he wanted changes my grief.
How do you help patients and family members deal with both real guilt and guilt feelings as they face the final days in their relationships?
My goal is, first, to be safe enough that people can begin to speak about their guilt.
Second, to describe how might their life be different if the initiating feature of guilt was not there. In an ideal world, what would they like to see happen? Bring it out in the open, because then you can begin to do something about it.
Third, to go into the grief that could be associated with guilt. If this hadn't happened in your life, how would your life be different? If this relationship hadn't been hurtful, how would it be different? And what would be necessary if perhaps you hurt somebody? What would you like to see happen with regard to that person—or to that experience if the person is no longer available to you?
And finally, how does it fit into your understanding of God?
How has working with the dying given you spiritual insight into yourself?
I think it has given me a sense that I really only have now with regard to all the relationships that are important to me. That affects my being a father and a husband and a friend. I now work at the moment in time more than I did before I embarked on the study.
Copyright © 2002 Christianity Today. Click for reprint information.
What Dying People Want: Practical Wisdom for the End of Life is this month's selection for the Christianity Today Editor's Bookshelf. Elsewhere on our site, you can:
- Buy the book online
- Read our extended review by Christianity Today Editor David Neff
- Read Margaret Kim Peterson's essay, "A Good Death"
- Discuss the book on our message board
DoctorKuhl.com offers contact information as well as a speaking schedule
Public Affairs has an excerpt from What Dying People Want.
Oprah Winfrey talked about the book on her television show.
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