Many people want to connect with their loved ones on a deeper level -- emotionally and physically -- before they die, but how exactly do you do that? And how do you know if that's what your loved ones want?
In 1992, David Kuhl, a doctor who founded the palliative care program at St. Paul's Hospital in Vancouver, undertook a research study to find these things out. For several years, Kuhl recorded the stories and desires of dying people as part of the Project on Death in America funded by financier and philanthropist George Soros, who himself admitted that he was not at his father's bedside when he died. Kuhl's research confirmed what he had seen among thousands of dying patients in his clinical practice: that the most important thing to them was "connection" -- with their true selves, with their children and other loved ones, and with a spiritual something bigger than themselves.
In this sense, Kuhl found, honest talks with dying loved ones are as important to them as medical care. Yet he also discovered that when it comes to deep conversation, many people don't know where to begin.
Q. How did this project come about?
A. We started the palliative program at St. Paul's Hospital in 1988, at a time when AIDS was always a terminal illness. I was providing care for men my own age and I realized I didn't have any understanding of the depth of their psychological and spiritual experience. So I decided I needed to stop and talk to people about what it was like to know that this disease in them would likely cause their deaths. Some were younger; generally, the people I talked to with cancer were older than I was. And I began to appreciate that dying was probably more about the psychological and spiritual than the physical, and that you can't really separate them.
Q. In your book, you talk about a cancer patient named Alice, whose unresolved relationship with her daughter was literally a great source of pain for her.
A. Yes, when I first met her, it didn't seem that it would be difficult to help her get on top of her pain, and then we could discharge her back home. But every day I went in to see her, and despite all the things that the team members had tried, her pain didn't change.
One day I said to her, "I think your pain is in your heart and it's a pain that I can't really change." We talked and she told me that she and her daughter were now estranged because she had told her daughter that she didn't think it was in her best interest to marry the man she was planning to marry. I realized that I had not explored relationships with her, so I did not appreciate the full gamut of what her pain might be. It had to do with the relationship between a parent and a child, a mother and a daughter, and there's no palliative or hospice team in this country that can take that pain away.
Q. Did this revelation alter your relationship with her?
A. It altered my relationship with her and with patients from then on. We could still treat Alice's pain to make her feel more comfortable, but we had crossed over into suffering, not just physical pain. I couldn't change that, but I could listen to her and not reduce it to something physical. And I became more determined to ask my patients bigger, broader questions, which led to doing the research project.
Q. So in your experience, what do dying people want?
A. Connection: connection to a sense of self, to others who love them and whom they love, and to something "other" – God, Buddha, Allah, universal love, something bigger than themselves.
Q. What's the most important thing people caring for their loved ones can do for them when they are dying, besides making sure they're not in pain?
A. What I learned from dying people is that their stories erupt; they can't even really contain them. But often they don't have an audience. So I would say the most important thing a grown child can do is to hear their parents' stories, hear who that person really is and was.
It's the responsibility of parents to make sure their children are heard and seen when they are young. And as parents grow old, they want to be heard and seen. People would say to me after we'd spend time together, "I only wish I had told this story to my children, because they don't really know me and I don't know them. And I'd like to hear their stories, too." People remember things from their childhoods that their parents don't remember, and the things that they both remember, they remember differently.
Q. Do you find that many families have trouble talking at that deeper level?
A. Yes, I think that connecting on an other than mundane, day-to-day basis is often a big challenge for both parents and children. So we start taking care of each other through a conspiracy of silence, and that doesn't serve us well.
It's often the case that it's the child who says, "Oh, come on, Dad, you're going to get through this," because they don't have a history of having had intimate and truthful conversations -- about what their relationship means to them, and the ways they may have hurt each other, and what they're thankful for from each another. We don't talk in those terms -- you know, mutual funds and scores of hockey games and the weather are easier to talk about.
Q. Don't you think we also carry these myths that people who give up sooner will die sooner, and we commend people for fighting death to the end?
A. I think that's a very strong message in the culture, and it's unfortunate that it's such a competitive metaphor because ultimately that's the destiny for all of us. Often, I hear children say, "You've got to fight this, Dad; you've got to keep going." But the person who has the terminal illness has already begun the internal process of dealing with death, so there's a discrepancy in how people perceive what's going on. The metaphor of a battle or a game that has to be fought to win can actually be more tiring for the patient.
Q. How do you suggest that people who feel disconnected with their parents or other loved ones, or connected only at a mundane level, initiate these conversations?
A. Be up front with it. Say, "Mom (or Dad), I really want to know you better and I'm not even sure how to begin. Why don't we talk about your early life -- who you were in your early childhood and adolescence. What was life like for you?" Eventually you can ask, "What's been most meaningful? What's been most challenging? What are you sorry about? What was the funniest stuff? When did you have the most fun?" And you can also ask, "Is there anything you really want to say to me? Or is there something you want to hear from me?" Because sometimes we think that unfinished business is only something that requires an apology or a correction, but I think unfinished business is often an unheard story.
Q. So what about when people want to bring up a buried problem between themselves and their loved ones?
A. You can say something like, "Because I want to be completely honest, I need to tell you that there was a time when I was hurt by you. I wish it wasn't that way, but it is and I think it's come between us. And before you die, I don't want anything between us because I want to love you." Or even, "I'm glad to be sitting here because there were times in our lives when I wouldn't have been."
Q. You say in your book that touching is very important for dying people. Let's say that a man isn't used to hugging or touching his father. How would you advise him to get started?
A. He might say, "I'm just going to sit beside you." It could start with just that. You know, "I'm just going to sit here for a minute and put my hand on your shoulder or my arm around you." And, yes, that will be uncomfortable because it's foreign to them. The parent might also be very uncomfortable with the son touching him, and the son might have to start with his mother because that's easier. And then he could say to the dad, "Before I leave today, I'm gonna give you a hug, too. Is that OK?" It could start like that, just with the coming and going.
Q. What can people learn about living from a dying person?
A. I think we can gain a lot of wisdom if we listen to the lessons they've learned, and learn how to discern the things that are important from those that aren't, and the things we should worry about from those that we don't really need to worry about.
Q. You say that dying can be a time of personal growth, hope, and joy. But I think it's difficult to understand how can you feel hope when you're dying.
A. I can appreciate how that seems like an oxymoron. And if you put all of your sense of being and value in the physical domain, then it's very confusing. But if you see it more holistically, you see in people a process of change, where the hope can transfer from hope for a physical cure to hope for time to be with their family members, hope that they'll have an opportunity to have conversations that are meaningful for them, hope that their sense of spirituality will sustain them until the end, hope that what they believed in was of value to them through that experience, hope of not being alone, hope of having some time alone. People have their own sense of what hope means for them.
Q. You've said that when you, your wife, and her mother were at your father-in-law's bedside when he was dying in the hospital, you were unable to have a final meaningful conversation with him.
A. The hospital staff said to us, "Why don't you go home? He could be here for a long, long, long time." Now I know that, by the way he was breathing, they knew it wouldn't be a long, long, long time. I wish somebody had said, "We're not sure whether it will be a day or two, or even just hours. So if there's anything you want to say to him, or if you want to just be with him or hold him, now would be the time."
So my goal has often been to get the family having more intimate conversations now, because my sense is that when children don't have those conversations with their parents, their grief will be greater after the parent has died. My rule of thumb is: If it's worth doing when someone has six months of life left, it's worth doing today.