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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.

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December (Web-only) 2002, Vol. 46