Ann. N.Y. Acad. Sci. ISSN 0077-8923
A N N A L S O F T H E N E W Y O R K A C A D E M Y O F SC I E N C E S Issue: Rethinking Mortality: Exploring the Boundaries between Life and Death
Confronting mortality: faith and meaning across cultures Steve Paulson,1 Allan Kellehear,2 Jeffrey J. Kripal,3 and Lani Leary4 1 Wisconsin Public Radio, Madison, Wisconsin. 2 Middlesex University, London, United Kingdom. 3 Rice University, Houston, Texas. 4 Psychotherapist, Honolulu, Hawaii
Despite advances in technology and medicine, death itself remains an immutable certainty. Indeed, the acceptance and understanding of our mortality are among the enduring metaphysical challenges that have confronted human beings from the beginning of time. How have we sought to cope with the inevitability of our mortality? How do various cultural and social representations of mortality shape and influence the way in which we understand and approach death? To what extent do personal beliefs and convictions about the meaning of life or the notion of an afterlife affect how we perceive and experience the process of death and dying? Steve Paulson, executive producer and host of To the Best of Our Knowledge, moderated a discussion on death, dying, and what lies beyond that included psychologist Lani Leary, professor of philosophy and religion Jeffrey J. Kripal, and sociologist Allan Kellehear. The following is an edited transcript of the discussion that occurred February 5, 7:00–8:30 pm, at the New York Academy of Sciences in New York City. Keywords: death; dying; mortality; near-death experiences
Steve Paulson: Thank you. It is a great pleasure to be back. It has been a wonderful series so far, and I’m quite sure we’re going to go out with a bang tonight. We’re going to take a more existential look at mortality—what it feels like to face death head on, both for the person who is dying and also for the family members left behind. How do people confront their fears? What can they do to reduce their anxiety? What does it mean to accept death? And how does the person’s faith or lack of faith figure into these questions? We’ll consider the spiritual and religious dimensions of dying and also how different cultures in different historical periods have thought about death. It is a lot of ground to cover, and lucky for us we have a terrific panel who can help us sort out these questions, so let me introduce our speakers. Allan Kellehear is a professor of community health at Middlesex University in London. He’s an academician of the Academy of Social Sciences and a fellow of the Royal Society of Medicine. His research explores the experience of dying and end-of-life care, and his books include a social history of dying and, soon-to-be-published, The Inner Life of the Dying Person. Jeffrey J. Kripal is a professor of religious studies at Rice University and associate director of the Center for Theory and Research at the Esalen Institute. He specializes in the comparative study of mysticism and extreme religious states from the ancient world to today. His books include Comparing Religions and Authors of the Impossible: The Paranormal and the Sacred. And Lani Leary works with chronically ill, dying, and bereaved clients. She has worked for more than 25 years as a psychotherapist in private practice, as a chaplain in the intensive care unit of a hospital, and as a counselor in hospices across the country. She has been a professor at George Mason University and a researcher at the National Cancer Institute. Her books include Healing Hands: Meditations for Healing Through the Human Energy Field, and No One Has to Die Alone: Preparing for a Meaningful Death. Welcome, all of you. Lani, let me start with you. You have been at the bedside of many people in their final weeks, their final months before they die. Do you think most people at some point come to terms with their own mortality?
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Lani Leary: There are number of factors that either help or alienate a person from accepting death. In our culture we don’t do a very good job of being with death, and we certainly don’t do a very good job of being with those who are dying. Most of us don’t even ask ourselves—we don’t talk about when we die, we talk about if we die. So we ourselves haven’t given much thought to that. I’ve been with thousands of people as they died, and what they’ve taught me is that it is an imminent death per se that they’re most afraid of. It is the experience of being abandoned, of being alone with the inevitability of their passage. And if we help people to help others, they’re much more accepting of what is inevitable. Paulson: When you say they fear being alone, could you elaborate? Leary: They don’t fear the pain associated with death as much as they fear the pain of being left alone with it. So families who don’t touch, families who don’t talk, families who don’t participate exacerbate the fear and the anxiety of the dying person. If we can change that in our culture, we can change the experience of how a person goes toward their death. Families that do participate, whether it’s through hospice or talking about the experience . . . in other words, just asking open questions, such as “What is it like for you today?” Even the question that sounds stupid at the outset—“What’s the hardest part for you about dying?”—that opens up the experiencing of companioning, and that is what the dying want the most. And if we can do that, we change their fear and we change their anxiety. Paulson: Now, Allan, I know you have also talked with a number of people who are in the process of dying. Is fear pretty much common place? Does pretty much everyone fear death? Allan Kellehear: Fear is an element in most people’s experience of dying, but it is more common in people in midlife. That’s been my experience. The very old—the old—and ironically, children, seem to be less anxious about that. But I agree with Lani’s observation about fear of abandonment and vulnerability. That is a very common fear. The problem, when you review the literature on the fear of death very carefully, is that it falls apart in your hands precisely at the point where you ask what it is about this that people fear. That is a black hole, a bag that has a lot of different things in it. It could be fear of choking, it could be fear of ghosts, it could be fear of meeting your dead mother-in-law again. Paulson: [Laughs] Kellehear: It’s a whole range of fears when you unpack it. So when you start unpacking fear of death, it’s often the fears that you carry around about life ending that, somehow, it seems to raise. Paulson: I was surprised that you didn’t say fear that it just all ends—that sort of primal, existential panic. Kellehear: In my experience, that hasn’t been a big one, but it’s there. The one thing that’s important—and I’ll say this at the outset as a sociologist—the key thing here is diversity. The very social circumstances— diverse cultural, ethnic, racial, and religious experience—that’s really important to get your head around with all of this discussion. I read a paper just recently on the issue about companioning at death, and there’s no doubt that the vast majority of people don’t want to die alone. But increasingly all over the world, in the United States, and in Europe, and in Britain, there’s a small group of people who really don’t want to die with anyone, thank you very much. They want to die at home alone. Paulson: Not even with family members? Kellehear: No, no—not with anyone—preferably alone. And there was an interesting case study in Britain of a woman who was 92 who’d had a heart attack and was admitted to emergency. She was very keen to C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 58–74
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sign herself out. They said, “Well, madam, if you sign yourself out, you could die.” Imagine saying that to a 92-year-old, “Madam, you could die.” Audience: [Laughter] Kellehear: I’m not sure who the news was for. She thought this was outrageous, and she left, got a bus, went home, and promptly died there. She was clearly happy to do that. There is a small group of people for whom, and you see this all the time, die alone at home and are found some days, sometimes weeks later. In Britain, there have been celebrated cases where bodies have been found a couple of years later. Some of those things are failures in health services and failures for community care, but others are not. Others are clearly—and this is a growing number I suspect—people who wish to live their lives independently and to go that way, and for which dying alone is representative of a kind of resistance and a dissent to companioning. So although companioning is incredibly important, it’s really important to understand the diversity of people’s views about this. Paulson: Jeff, let me bring you into this discussion. You are a scholar of comparative religion, history of religions. Is a spiritual perspective or religious perspective fundamental in how people approach the thought of dying? Jeffrey J. Kripal: It is; it’s richer than that though. One consensus among the scholarly community is that a lot of religious beliefs actually probably originated around death. In other words, very strange things happen around human death, a lot of extraordinary things. And then these generate basic religious ideas, like a separable soul. In other words, there’s something about the human being that is not the ego, is not the cultural or social self. It’s not what we’re all in tonight, but it’s deep down in us, and that’s what’s released at physical death. Paulson: When you’re saying strange things happen, what kinds of things? Kripal: Historically, the theory was that the belief in a soul originated with people dreaming or seeing their loved one after he or she had passed, and that, of course, implies that they still exist. The assumption in the anthropological literature in the 19th century was what establishes that it’s just a dream, or it’s just an illusion. But what we see in the literature, as well, including today, is that this really does happen to people all the time, and the people to whom it happens are absolutely convinced that it’s not just an illusion, or just a hallucination. So it looks like this is the origin of the belief in a soul, and of course that’s the key issue here, really, at the end of the day. My own position on this is very close to Allan’s notion of diversity. I think there are two elephants in this room. One is science, and on some level modern people are convinced that mind or consciousness or soul is simply an epiphenomenon of the brain. So what that means, if that’s true, is that death is the end of the soul or the person, just like you switch off a light—there’s that scientific challenge to this traditional notion of the separable soul. On the religious side, what Allan was getting at, and certainly what I want to get at, is that it’s not just a matter of faith or no faith, it’s also a matter of too many faiths. I grew up in a farming community in Nebraska in the 1970s, where the notion of religious diversity—everybody was German—boiled down to whether you were Lutheran or Catholic. That was the extent of the diversity. In that world, when people die, there’s a standard narrative that everyone pretty much buys into. Even if they doubt it, it’s the cultural narrative. We know what a funeral looks like, and we know what happens to the soul after it dies. We know to have a mass said for the person. Whether you’re Catholic or Lutheran, but it’s pretty straightforward, it’s frankly comforting, and it works to help that community through that loss.
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That’s no longer the case in the modern, urban world. I live in Houston, and there is no standard narrative. If a doctor’s going to walk through a modern hospital, he’s going to move through a couple dozen world views in a single day, and they’re going to have radically different belief systems around what happens in the death process. A lot of folks in the modern world—and I put myself here clearly—to the extent that we grant humanity and integrity to other people, to other cultures and other communities, have to be asking on some level who’s right. Paulson: Well, Lani, let me bring you back into this. You have all these experiences with people, their final stage—and we should make the distinction that we’re talking about people dying from illness rather than sudden deaths. Leary: Illness or age. Paulson: Yes. Leary: And 90% of people in the United States will die from age or illness. Ten percent of us will die from sudden, unexpected death. Paulson: So following up on what Jeff has just said, do people talk about this kind of thing in your conversations with them, these more spiritual questions? Leary: If we ask open questions, it invites that. My experience sitting with people who are dying is, when I ask them, “Have you had any contact with a deceased loved one?” Their response is, “[sigh] Finally, someone is asking me.” When I did research at the National Institutes of Health, I worked with children who were dying of AIDS, and I sat with a child who was dying and had three other friends who had predeceased him. He looked up at the ceiling and said, “Johnny, and Timmy, and Sally,” and I said to the nurse, “Go get his parents.” And when the parents came, the child died soon afterward. When I started interviewing parents and asking them, “Have you had any contact with your deceased child,” their response was “Thank God someone is asking me this.” Now, supervisors didn’t want me to ask this stuff, but across the board it was the most comforting exchange that they had, because they needed validation of something that was clearly important to them, that created meaning around this tragedy, that changed their experience of their child’s death. Paulson: What do you make of it when people start saying, “I see Johnny and Sally . . . ?” Leary: I’ve had my own personal near-death experience, and my experience is that it happens, and they’re as close as right here. But it doesn’t matter what I believe. It matters what they’re doing with their experience and how we support them in making meaning. It doesn’t matter what I think. It doesn’t matter whether I prove it or not, but I’ve had thousands and thousands of people telling me the same story over and over again. Tahiti didn’t use to be on the map, and if we had described Tahiti before in these terms, the explorers would have been called crazy. But after thousands of people went to Tahiti with exactly the same description of the people and the language, Tahiti was placed on the map. Paulson: Allan, you have also talked with people in final stages. Have you found that belief or lack of belief in the afterlife is fundamental in terms of how they approach death? Kellehear: My experience reflects some of the recent studies on the role of religion in relation to dying people, which is that it doesn’t really matter what you believe in as long as you believe it deeply. So if you are a religious person and you really believe it deeply, that helps—that is a comfort. If you’re committed to
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being an atheist and you’re secular, that has its own consolation. It’s the people in the middle that have the problem, which is actually the vast majority. Kripal: I was going to say, that’s pretty much everybody. Kellehear: We were talking earlier about the anxiety and some of the fear, and for most people, if their religious beliefs are lightly handled, in a crisis that becomes a problem. Paulson: Explain why, for an atheist, who is sure that it all just ends when they die, that’s a source of comfort, whereas for the people in the middle, who are not exactly sure, that would cause more anxiety. Kellehear: Quite a lot of people who are humanists and rationalists, who believe that when they die, that’s it—people who particularly expect this think about the people they leave behind and the legacy that they leave behind, the work they do—they think much more about it than quite a lot of people who just sort of bumble along and think, “Well, I’ve got another 10 years, I’ve got another 20, I’ve got another 30.” People who are genuinely and deeply committed to the idea that this life is the only life, and that’s the end of it, do seem to take some comfort from doing the preparations, leaving behind supports for the people that they love, and think much more about the existential contribution made by their work life, or their art, or their music, whatever it is that they’ve done. Paulson: We should talk about a phrase that we hear more and more: how important a good death is. What is a good death? Are there common agreements as to what that entails—things that people should do in their final weeks and months? Lani? Leary: In the medical community, a good death would be perhaps described as a death without pain, a death without prolonging or suffering. In a family context, we would use words like an authentic death. In other words, a person died with the same values with which they lived. A person died with choice—when a family made decisions together. I like to say that the person who’s dying gets the vote. So as my father was dying, the mantra became “What would Dad want?” It wasn’t our vote, even if we thought that it could be different for him and better. The “better” was defined by us instead of him, and I think the person who’s dying should get that vote. Paulson: I would think that for some people, they would want to talk about it, even when some of their family members might think, “This makes me uncomfortable;” whereas I can imagine other people who are dying don’t want to go into any details. Leary: Right. So there are different cultures that don’t want to talk about it, and I want that to be respected, for them to have a good death. Again, it’s whose agenda is it. When I’m training hospice physicians, nurses, and social workers, always we have to ask, “Whose agenda is this?” Kellehear: That’s a really good point, and the anthropological literature bears that out. In the anthropological literature the phrase good death has a very specialized meaning, which is quite different from the way we’ve been using it. We’ve been using good death very much in the way in which the medical community uses it, which is that you’ve died reasonably painlessly and you’ve had a few relatives around. But in the anthropological literature, the good death is the death where the family and the community participate and support the dying person. And we haven’t had the good death for quite a long while now, for at least a century, because most of our deaths have become managed. So what happens is that we get surrounded by professionals, the priests and the doctors.
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Leary: And machines. Paulson: People, for the most part, die in hospitals rather than at home. Kellehear and Leary: That’s right. Kellehear: So the idea of the good death really is a managed death; that’s what we’re really talking about. The kind of phrase that [to Leary] you’re using, the appropriate death, bringing the agenda back to the dying person, is actually a very old idea and, in fact, is quite a foreign idea in today’s culture. One of the key reasons why it’s so important for the community to talk about this is that unless you do talk about this, and you debate the issues of what a good death is, you’ll end up surrounded by machines. Leary: Right. It will be by default. Paulson: When do you need to have those conversations? Kellehear: You need to have those conversations now. Paulson: So not when someone is terminally ill. Leary: No, we need to start with children. In the same way that we need to start sex education with children who are five with proper vocabulary, we need to be sitting around that kitchen table, talking about illness, death, choices, values, and opportunities. And we need to bring children to the bedside of their dying grandparents and teach them that it is okay to touch, and to get into bed and to snuggle, and that, in fact, children can participate and can make a difference. And when we teach that, those children’s experience of death is profoundly different because they were able to say, “I know I helped Grandpa. I know I made a difference.” We need to be having those conversations now. Paulson: Is anyone doing that? Is anyone really including their children? Leary: I’ve had conversations with my daughter from the very beginning. My daughter has a dangerous job on the ocean, and she recreates on the ocean. I asked her recently, “If you could choose what kind of death you would have, if it were up to you, what would your perfect death be?” She said to me, “I would drown.” As a mother, I don’t know how she’s going to die, but she spends 90% of her life on the ocean. Do you know how different my grief will be because I asked that question?—changing from tragedy to choice. We can have those kinds of conversations, which she is now used to, but there are layers and layers of these kinds of conversations that open up connection. Paulson: So you’re saying that talking about death does not have to be depressing? Leary: No; I think it’s kind of interesting. I have these conversations at dinner parties, and people know to expect it. “Oh God, what is she going to ask this time?” Paulson: And they still invite you. Leary: I still come back! Kellehear: Actually, when I go to dinner parties, I don’t tell people what I do. Otherwise, I get to eat nothing [laughter]. People do want to talk about this, but they need permission often.
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Leary: They need language, too. They need models. How does it sound? What does it look like? How do we start this conversation? Paulson: Jeff, what kinds of conversations do you think we need to have about this? Kripal: That’s a good question. I’m sort of at a loss for words. I would agree with everything that’s been said. The only thing I would add, and this is just from watching my wife’s parents die in hospice—in our home, actually—over a 2-year period, is that it can be really messy, and that experience can have really destructive effects on the family network, on the conjugal relationship, and all sorts of things, even with the conversations. So I guess my only worry about talking about a good death is that we feel guilty when it doesn’t go how we imagine that good death should go. I don’t want to put guilt on top of all the suffering. Kellehear: I don’t think we were talking about a good death necessarily, but talking about death and dying and loss. And a subpart of that would be, what is the good death? Leary: To you, to each person. Kellehear: It’s important to swap horror stories as well as good stories, and get a sense of that. I was talking to somebody today about Sherwin Nuland, who wrote a book called How We Die: Reflections of Life’s Final Chapter. People might have heard about it—a New York Times best seller. Planted in the middle of How We Die is a portrait of a young woman who was murdered in front of her mother. The woman was stabbed about 27 times by her assailant before they got hold of him, and the mother finally embraced the child on the ground as she was dying. She was barely conscious. But the thing that stuck in the mother’s mind was how calm her daughter looked, which was counterintuitive to the violent experience that she’d had. And that calmness, that half-smile that she noted on her daughter’s face as she died, haunted her for a very long time. This reminds me of the story of David Livingston when he was attacked by a tiger. He describes his feelings when he was being attacked by the tiger, shaken like a rat by a big dog, of feeling fantastic—he felt fantastic. He describes that in great detail. And if you watched this kind of violence as an outsider, as a rescuer, as part of a resuscitation team, as a police officer, or as a mother, you’re seeing and experiencing that dying in a completely different way. Kripal and Leary: [Agreeing] Paulson: You’ll have to explain this. Why would being shaken by a tiger feel fantastic? Kellehear: There are number of physical hormones kicking in as part of the defense mechanism of all animals that get attacked. An opossum, for example, goes very still when he’s shaken by a dog. There used to be wonderful experiments demonstrating this. Of course, they wouldn’t get past an ethics committee today, but thank goodness we had them. Paulson: [Laughs] Kellehear: So we’ve got these incredible physiological recordings of what happens when animals are threatened with death. The same kinds of hormones and neurotransmitters operate in our body as well. Near-death experience is also a part of that. You get people who have had terrible injuries. And when they can talk again, they tell you something completely different from what you would imagine. So I’m only telling these stories to say that it’s really important when we have these conversations to realize that the bad deaths and the horrible deaths may not be. It’s only by having this conversation that you’re even aware that
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there are different perspectives. So a community dialogue around all aspects of death and dying is a good thing. Leary: [Agreeing] Paulson: What you’re suggesting is that it may be much harder for the people who are not dying, for the family members to watch this, rather than for the person who is dying. Leary: It is. Some of the value of all the research that’s come out of near-death experiences is that—I have to tell hospice workers this all the time—what you are seeing of the family members, what you’re seeing on the outside is not the reports of the dying person’s experience on the inside. So in other words, the death rattle that sounds so uncomfortable and horrible is not necessarily experienced by the person who’s dying. That kind of information, back from all the research and thousands and thousands of people who have reported the process of dying, of leaving their body, is important because, again, it changes whether people are even willing to be near a person who is dying, but also their grief afterward and how they attach meaning to this death process. Kellehear: That’s very true. You listen to a Japanese man eat ramen and it’s horrible, but he’s enjoying it. Audience: [Laughter] Paulson: We should bring in a more cross-cultural perspective here. I don’t know if we’ve been mainly talking about dying from a Western perspective, but if we compare this to other countries and cultures around the world, is the experience of dying much different? Kellehear: Death is one of the things that you can write thousands and thousands of books about. Every culture has its own little customs, but when it comes to dying, there are not many different ways to die. I’m not talking about necessarily the difference between suicide and cancer dying and death row, to just take three random examples. In terms of the history of humanity, 99% of our way of dying has been sudden or due to infectious disease. It’s been very quick. Paulson: You’re talking about before the era of modern medicine. Kellehear: I’m talking about before the last ice age, actually. So it’s about one-and-a-half million years ago. Up to the last ice age, people died rather suddenly. So when they talk about dying, they talk about another world journey; that’s where they put dying. So rather ironically, for most hunter-gatherer societies, dying begins after death. Paulson: There’s the beginning of a long journey into the unknown. Kellehear: Yes, but you may actually really die if you don’t survive the trials that you encounter there. Paulson: So this is why at burial sites there might be clothes, artifacts, or weapons even—because you might need those in the next stage, wherever you’re going. Kellehear: Exactly. The normal things you would take in the subway. Audience: [Laughter]
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Kellehear: But after settlement, when people started to die slowly of things and life expectancy increased, then we had this dying in bed with family and so forth. Then there was the rise of the professionals, which really began in the cities—the doctor, the lawyer, the priest—those kinds of people became really important. In modern day, postmodernity or modern society, contemporary society is actually being created in the image of the city. So in that sense, urban modern life creates a kind of dying where we’re surrounded by professionals who are largely taking care of us, and then we get this institutional dying that we’re trying to extricate ourselves from and worry about. In the cultural sense, these are major forms of diversity in dying. But cross-cutting that, the way we think about dying in affluent society is that it’s going to be slow. We’re going to be in a nursing home, or we’re going to die of cancer or motor neuron disease or organ failure. In India and Africa, and large parts of China, that’s not going to be the case, where infectious diseases reign, where trauma, being poisoned by the water or by a snake is still common. So you get that kind of diversity around dying too. But dying is one of those things with remarkable, steady patterns compared to death customs. Paulson: What about different religious traditions? Does it matter whether you are Hindu, Muslim, Christian, or a believer in a particular African religion? Are there different approaches to thinking about dying? Kripal: There are major differences; this really does impact how people experience death and think about death. In the Western monotheisms, it’s a kind of one-life model. We’re created by a singular God and we’re born once, we have one life, and then we die. That’s it. And then you branch off into some kind of afterlife, depending on your deeds. Death has a kind of finality, and the ego, the social ego, the self is imagined as lasting for eternity. You have this language about seeing your loved ones in heaven. It’s the ego itself that survives this process, whereas in Asia, Hinduism and Buddhism, this notion of karma and reincarnation is actually in some ways more interesting. It insists that something survives death but then reincarnates in another body, and in another and another, but the key here is that what’s reincarnating is not the social self, it’s not the ego. Because you can imagine having many, many lives, you were one person three lives ago, and then you were somebody completely different two lives ago, then you were somebody completely different in the last life, and now you’re someone completely different again. So clearly it’s not the ego that lasts. Paulson: So what changes if you believe in that form of reincarnation? Do you live your life any differently because of that? Kripal: I would imagine you must. Life is not one shot. You’re caught in an immense stream of lifetimes stretching back as far as you can see in the past and maybe into the future. It’s a very different worldview, and it must impact how you approach your death. Paulson: One of the underlying questions here is to what degree do our attitudes about death and dying affect the way we live before we’re actually in those final stages? For a 30-year-old in good health, a 50-yearold in good health, if you are thinking a lot about death, are you actually going to live differently because of that? Kellehear: I don’t think so. Leary: I do. Audience: [Laughter]
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Kellehear: If you talk to a lot of people who have near-death experiences, and quite a lot of them are very keen to get into the hospice and palliative care movement, they think that if people only knew that there was an afterlife, it would make a difference. Well, most of human history believed in the afterlife—and I can’t think of a war that it prevented. And I know that’s a negative—that it’s a bit like saying I can’t think of an absence that I can remember. Nevertheless, no country that I can think of—no historical group I can think of—has killed less because of religion. Paulson: But it doesn’t necessarily turn on the question of whether you’re going to be less violent; it’s do you approach life differently in some way if death is more foregrounded in your consciousness? Kellehear: [to Leary] You believe it does. Leary: I think it does. With the reports of people who have had near-death experiences, their life after the experience—not the belief in afterlife, but having seen their death and having seen the other side and come back—most of them report a keener sense of altruism and contribution and making different decisions. For most of them, their lives have changed. Paulson: Okay, so that’s a very specific kind of case, people who have these very dramatic near-death experiences. Leary: It’s an experience rather than a belief. Paulson: What if we do what you were talking about earlier—having conversations about death? Do you live differently if you do that? Kellehear: I think you do. Leary: I think you do. I participate with people who are dying. I’m not afraid of dying. I lean into death. I see it as an opportunity to serve as opposed to pulling away from it and not touching it. My life is very different as a result. Kellehear: I used to run groups for people who had advanced malignancy. They would come for 8 weeks, and they would have readings that they would have to do that were about their own health. They would have other readings about their social adjustments and the social troubles that were reported in the literature. And then there was a section for 2–3 weeks where they had to talk about death and dying. We evaluated these groups, and at the beginning, if you asked these people about the program, they would always say that it was the death and dying stuff that they didn’t like. They would wish that wasn’t in it, but it was nonnegotiable, so they have to do it. When they were through the program, that’s the one they liked the best. That was the one they got most out of. It made a huge difference in talking with family, preparing themselves psychologically, and preparing themselves socially. Many of them hadn’t even made wills. There were, particularly in an older group, people who felt that making a will would make it real, might actually bring it on. The sting was taken out of that. Kripal and Leary: [Agreeing] Kellehear: So it does change behavior. Talking about death and dying does change behavior, not only for people who are terminally ill, but for most people. If you sit down and have conversations on a regular basis, you do alter your behavior. And nearly all the evaluations of death education programs that we have in the United Kingdom and in Australia have shown that. C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 58–74
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Paulson: That makes me wonder if every high school or every college should have a death studies program. Should that be a requirement? Leary: I led a death studies program at George Mason University with graduate students, and I didn’t care about the final exam with the dates and theorists’ names. As the final exam, I would ask them, “What is your greatest fear about dying?” One young man who was 26 said, “My greatest fear is that I will one day be married and have children, and my parents will be dead. My greatest fear is that my children will not know their grandparents or their values.” I said, “What are you going to do about it?” Always, what are you going to do about that fear? I’m encouraging them to lean into their fear and make it different. And so he videotaped his parents and asked them questions about what they wanted their nonexistent grandchildren to know. Another young woman’s greatest fear about dying was that she was the only child, and she knew that it would be up to her to write the obituary and eulogy for her parents. I said, “What are you going to do about that fear?” She flew home to interview her father and said, as I did to mine, “Let’s write your obituary together.” And it didn’t surprise me that a year later a wonderful letter came from her saying, “Thank you so much for making me do this, because my father did die and I was prepared. I was grateful, and it made a difference.” So how will you lean into your greatest fear? How will you make it different? You can do that, and then you won’t have that same death anxiety—you won’t pull back. You can all do that. What is your greatest fear about death or dying? Kellehear: Death education is like health education. Good death education addresses the concerns around the troubles that you can prevent, and the things you can’t prevent, you can have reduced, a bit like wearing a seatbelt. Not wearing a seatbelt, the chances are very high that you’ll be decapitated in an accident. Wearing a seatbelt, there’s a high chance you’ll lose your spleen. Better to lose your spleen. You’re better off than without a head. Death education is a bit like that. You don’t lose all your fear. You’re not a new person, but you’re better off with it than without. Paulson: We’ve been talking about the history of attitudes about dying. One of the things that’s striking about the culture that we’re living in now is that it’s far more secular than it used to be. Obviously there are differences depending on which particular cultures we’re talking about, but there are many more people who we would identify as having secular values now than in a lot of previous ages. Has that changed the conversation about death and dying, the fact that religion is not just a given? Kellehear: I think it has. Kripal: It has profoundly shaped the discussion. This is what I was trying to say before. If you grow up in a culture in which there’s one story about what the human condition is and what happens to us after we pass, that’s a pretty simple thing in many ways. But we don’t live in that culture, and so we’re thrown into confusion about death, in particular, because there are all these competing stories. There are all these competing narratives in the secular space about what death is, and so it’s like trying to listen to a radio, 5 stations or 10 stations at a time. It sounds like garble, and so people just pull back and they despair. That’s the negative part of it. The positive part of the secular context is that it allows us to ask other questions and to be a bit bolder. All of the near-death literature is secular literature in some sense. It’s moving away from a singular religious worldview, and what we’re seeing is an emergent new worldview, at a very early stage. That’s why it’s so confusing; we’re just not there, and we may not get there. I’m not suggesting we need a singular worldview. I’m saying, in a secular space, there are many competing stories. Paulson: What do you think that emerging worldview is?
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Kellehear: It’s a work in progress. It isn’t just that death has got multiple story lines. It only has multiple story lines because life has multiple story lines. It’s been a long while since life has had a single story line—at least 50 years; some say longer. In the 16th century, the Christian church used to say that when you married you would stay married until death. Well, easy. Look at the demography of death. Basically, you get married at around 15, 16, and one of you will die about the time you’re 22, 23. So the average life of a marriage would be, what, 7 years? Any idiot can do that. Kripal, Leary, and Paulson: [Laughter] Kellehear: Today, if you marry somebody and they lay that on you, you could be with this person for 50 to 60 years. You’d want to be deeply in love with that person, down to the genes, to survive that. The life game has changed, so of course the death game has changed. And what characterizes modernity is that people then have to go back to their actual experiences and think, “What are my experiences?”—because that’s the only solid thing that we all have. That’s where the near-death experience comes in. People will say, “Well, this is the experience I’ve had. What’s the story I’m going to make of it?” Leary: Right. What is the meaning? It goes back to meaning and how we can settle into it. Paulson: So you’re saying that one of the crucial conversations to have as someone is dying, and probably on both ends, for the person dying and also for the family members, is to have those conversations about meaning, which I presume involves maybe some sort of life review. Is that important, life review? Leary: Open questions, yes. What does this mean to you? What is the hardest part? What surprises you in this journey? What do you want? What do you need? What do you value? How can I be with you?—all of those without any assumptions or expectations on the part of the supporter. Just open questions, so that they get to define their journey I think would be helpful. And the same with those bereaved that are left behind: what would assist you? Some people want to talk about it, some people don’t. Some people want the support of peers; some people want the journey alone. What is your story? What is your meaning? Paulson: We only have a few minutes left before we turn it over to the audience. I want to get a little more personal before we do that. I’m going to ask each of you this question: Do you fear dying yourself? Does this cause you much anxiety? Jeff? Kripal: I fear death, sure. I’m not sure it causes me a lot of anxiety, but it would if I got the wrong diagnosis with the wrong news. I’m not immune to this in any sense. Paulson: Lani? Leary: Well, I died and I didn’t want to come back. I didn’t tell my story for about 5 years because at the time I had a 2-year-old child, and I thought to tell that story to other mothers would be to be banished. But I still remember it so profoundly, and I want to go back. I won’t do anything to make that happen because I also know what a gift this is, but everyone has a perfect death, and I want to use my dying in the same way that I use my life. I want to be teaching. So I’ve asked this question again in my family and at dinner conversations: “If you could go, how would you go?” My husband wants to be hit by a bus. That would not be my choice. I want a good three to six months with an illness, so that I can talk about it and teach people how to be with it. But no, I don’t fear it. Paulson: Allan?
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Kellehear: Yes, I think so. When I was in Australia, I got my first job in a very small country college. I was not in the Outback, but it was very, very remote. We lived half an hour outside the college, surrounded by wheat fields. The summers used to be around 48°, 46° C. I don’t know what that is in Fahrenheit—it was very hot. I used to entertain myself by going to art classes in the evening. One day I set off on this road; it was dead straight, dead flat, and as I was driving along I saw a dust storm to my left—huge thing, red, thick, swirling, moving across a wheat field coming at me on my left, and everything it passed disappeared under it. Now that’s not that unusual except that on my right was a thunderstorm. The thunderstorm was a very bad electrical storm, and it was coming from my right, and it looked like they were both going to meet on the road and I was driving into it. It was too late to turn around—this is a true story. I just stopped the car. The car was engulfed by this red dust, and the car started shaking—I had a small car in those days; this was not long after I had been a student—couldn’t afford much—and I was being buffeted around. I thought, “I wonder if the car will turn over.” I was raised in Sydney as a city boy, so I never had come across anything like this, and all I could think was, “Shit.” I hung on to the wheel, and after about 90 seconds the road appeared before me again. All I can say is I’ll wake up one day maybe, and I’ll only have a few seconds, or a few minutes, or maybe a month, and I’ll be frightened. I’m not a believer in anything, but I hope the old road will appear before me again. Paulson: One final question for each of you, and I think I can guess how some of you will respond to this, but what do you think is going to happen to you after you die? Will there be some element of your consciousness or your soul, to use the religious word, or do you think this all ends once your brain stops functioning? Jeff, let me start with you. Kripal: I actually do believe in a soul, which isn’t the same thing as an ego. I’m not at all convinced that the “I,” this thing up on stage, will survive. I sort of doubt it. I say that not out of belief; I say that out of reading too many stories and talking to too many people and encountering these things in other human beings. And I think Lani is right; they sort of form a gestalt at some point that’s extremely convincing, even though the pieces and the details may be functions of the culture or the content. Paulson: Lani? Leary: I’m ready to shed my ego. That would be a great part of the journey, and I do believe that my soul goes on. I do believe in and have seen deceased loved ones, and I believe in the connection. Yes, it’ll go on. Paulson: And Allan, I’m guessing you do not believe it’s going to go on. Kripal: He left that open with the road. Kellehear: [Laughs] Well, I was raised in a single-parent family by a Japanese mother. Her religion was Shinto. And the only job she could get where she didn’t have to speak much English was as a housekeeper in a Catholic monastery—10 priests. So I stayed there from the age of seven until I got my first degree. Now, can you imagine negotiating Shinto beliefs with Catholic, Christian beliefs? What this has given me is a lifetime where I’ve forfeited believing anything. Kripal: [to Kellehear] That was my point. Kellehear: So what I’m left with is hope, and [to Kripal] you’re right. My answer about hoping to see the old road again is probably where I’m at, but I wouldn’t like to lose my ego. I quite like it [laughter].
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Paulson: Okay, that’s a perfect segue here. There are, I believe, a couple of roving mics, so if you want to raise your hands, we have about 20 minutes or so for questions. Audience member 1: What is your opinion of the Death Cafe movement? Leary: Love it—have them, yes. A death cafe is where strangers come together to share coffee or a meal and explore their feelings, questions, and experiences around dying. But it’s often strangers coming together, because often families won’t start that conversation. There’s a great promise in that. Audience member 1: We’ve been very successful here in New York. Leary: Great—glad to hear it. Audience member 1: We’ve been running now for a year, and we’ve had up to 75 people joining at this time. Leary: And have you had them over and over again? Audience member 1: Every month—every third Wednesday. Leary: Do the same people show up? Audience member 1: We have some repeats, yes, but we have many, many new. Leary: I’d be so interested if, after they leave the cafe, they’re going to do something different as a result of that conversation. Audience member 1: One of the things that I ask them to do is to take the conversation from where we are, and the table they’re at, home. Leary: Yes! Audience member 2: What is your approach to dealing with someone who has dementia while they are dying? Leary: I work with people with dementia and Alzheimer’s the same as I work with anyone who’s not, and I teach caregivers. I’ll run into caregivers who will be in tears, and I’ll say, “What’s the hardest part?” Recently a woman said, “I see my mother every day, but she doesn’t know it’s me.” And I’ll say, “What is your goal?” And she says, “To love my mother and have her feel loved.” And I say, “Does it matter, then, whether she knows it’s you? Can you still love her?” If I have to repeat the same thing every single day to someone, that doesn’t get in the way of my caregiving, of my comforting, of my loving. That’s what I would say. Kellehear: There have been some very interesting first-person accounts of people living with dementia who have been able to write and record their thoughts right up to the time when they were unable to. It’s a complex and mixed experience, and, believe it or not, the accounts we have so far suggest that there are positives in it for the person who has dementia. And it cautions once again the idea of believing what you see. You need to be very careful about being overwhelmed by your perception of what’s being lost to you. You may knock at my house. I may not answer, but it doesn’t mean I’m not home.
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Paulson: So in a practical sense, we should be a little careful about what we say in front of people. If it seems like they are nonresponsive, we should not assume that they are not able to listen to the conversation. Kellehear: Just another day at work. It’s exactly what you’d be doing at work. Leary: And in the same way with people who are in comas. I always speak to them as though they are fully there and fully themselves. I’ve had people come out of comas and be able to repeat to me verbatim what I said to them. Audience member 3: What do you think of the humanist notion that we live on in the impact that we’ve had on other people? Kripal: That’s all correct. We obviously do live on in all sorts of ways in our work and in the people we touch, and of course if we have children we live on genetically in some ways, too. So there are clearly all sorts of afterlives that we have. But that’s not really what people mean by surviving bodily death, at the end of the day, when they’re coming out of a near-death experience or they’re speaking religiously. That’s a lovely way of putting it, but it doesn’t answer the fears and the hopes of the majority of human beings on the planet. It takes a lot of courage to adapt that worldview—and a lot of education, too. And most of the planet does not have that kind of background. I think it’s hard. Leary: I also see this as an opportunity at the deathbed, for instance, to be able to say to someone who’s dying, “How would you most like to be appreciated?” or “How would you most like to be remembered?” To have that exchange lets them know that they’ve left a legacy that can live on and on. That’s a question that we could offer them, to help finish some business. Audience member 4: How does morphine affect the consciousness of a dying person? Kellehear: I did some work on this recently with some physicians in the United Kingdom. There’s a growing consensus that this is a problem. There’s no doubt that, particularly with cancer and some types of organ failure, we need strong painkillers. It’s not clear at all that we need to use opiates at the level we currently do. We found that the number of hallucinations rises with the use of opiates, and interestingly, deathbed visions, which have a prevalence in resourceful countries of around 30% to 40%, drop like stones in hospices and palliative care that use heavy opiates. And that’s interesting because deathbed visions are usually quite comforting, and hallucinations are usually quite distressing. We do need to do some rethinking around symptom management, particularly in the last 48 hours of dying. That would be my observation. Audience member 4: But it seems to me that it deprives a person of the process of their own unraveling and passage. Kellehear: Yes, it does, but bear in mind that it’s often done as part of a symptom management regime, and symptom management regimes are, historically speaking, still in their infancy. Quite a lot of people don’t die under palliative care; only a very small group of people do. And generally speaking, the people who are under palliative care, most of them have cancer, and that could be very difficult to manage in the last stages. What hospice and palliative care need to do is perhaps finesse the concerns with pain control, with a drug that possibly allows dying people to have a little more alertness and control toward the end than they currently do. We oversedate dying patients at the moment. Paulson: Lani or Jeff, do you want to add anything to this?
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Leary: The only thing I would add is that, while morphine may alter some consciousness, pain also alters consciousness incredibly. So if you’re wanting the end of life to be more unraveling, I guess I see pain as a huge unraveler. People aren’t able to focus, concentrate, be present, and all that. I don’t know what the answer is, but I do know that pain gets in the way of that ending. Kellehear: We need to finesse the pharmacology—that’s all. We’ve got alternatives to morphine. Kripal: It’s a great question. I’ve seen morphine use in hospice, and I’ve seen it close. It’s key to the very end in many ways. But the other thought I had, listening to you and thinking about the question, is that one of my intellectual heroes, Aldous Huxley, went out intentionally on LSD. He had his wife inject him with it as he was actively dying. That’s a different kind of answer. There are other options, but I wouldn’t suggest that one as a legal option, however. Kellehear: Why not? Kripal: People have thought about this, you know? It’s a great question; you’re probably right. You’re probably not going to be there when you’re dying if you use too much. Paulson: It’s worth mentioning too that there have been some clinical trials done with hallucinogens, especially psilocybin, for terminally ill patients, and apparently it has helped with that kind of existential panic. Kellehear: If you look at the international literature, terminal sedation is on the increase. There is no real understanding about why it’s on the increase. There are pharmacological alternatives to straight morphine, particular end of life, and there’s increasing dissatisfaction around the use of morphine in late-stage dying. Some of that has been already shown to be the politics between doctors and nurses, in particular. So there’s clearly a problem there. Terminal sedation practices vary widely, depending on what state in the United States you’re in and what country we’re talking about. Certainly in Britain, it’s on the rise, and it’s a worry; it’s in public discussion at the moment. Audience member 5: Lani, you mentioned that you had a near-death experience. Would you share that with us? Leary: It was a long time ago. I was 29 years old. I went to the dentist’s office. They were using laughing gas at that time. I had never had a drink, never used drugs, never smoked—hardly ever took aspirin. I think my body just said, “What is this?” And I went into anaphylactic shock, so one minute I was in the dentist chair; the next minute I was up on the ceiling looking down at this body. And as I looked at my 29-year-old body, I felt as though it was just a piece of clothing. I had a fondness for it; I knew it. I had used it well, but it was time for it to go to the Salvation Army. I wasn’t connected to it. I felt no fear, no pain, no anxiety. The dentist was kind of freaking out, and I was trying to talk to him from up there to say it was okay, but of course he didn’t get it. And I had no sense of time. There was no anxiety, there was no sense of passing time, so I don’t know how long I was up there in the corner. But the next thing I knew, it was as though I turned around and I was going into a tunnel. And my mother who had been dead for 15 years was right at the tunnel. I can still see her. She was beautiful and whole and vibrant and healthy, and she did not die that way. She was healed. Her arms were outstretched to me. And we communicated telepathically, so our mouths didn’t move, but I thought and she received, and she thought and I heard. And I thought, “I miss you.” And what came back to me was, “I know,” as though her arms were around me. I was not able to tell her I loved her before she died, and I said, “I love you.” And she said, “I know.” My ego was not present, because my ego here
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would have said I wanted to stay with my mother for years and years and tell her every single first date I had, and my wedding, and all about my child. The ego was not present, because I knew from a soul level at that moment that she had always been with me. We had never been apart. I knew that; I still know that. And so with that, I was drawn into a tunnel that was almost an opalescent blue—beautiful. At the end of the tunnel was a pinpoint of light, and I couldn’t do anything but go toward it. I went toward this light, and as I got to this light, it became bigger and brighter, almost like looking into the sun, but it wasn’t painful to look into this light. The light was in front of me, and the light was around me, and then I was in the light, and then I knew I was the light. But as a drop of water in the ocean is not separate, the light and I were made of the same substance. And I was home. It was—bliss doesn’t come close to the word, but I knew in that moment that I was forgiven for anything I thought was unforgivable. I was loved beyond all measure in a way that I’d never been loved before, and I wanted to stay there. And again, in the same telepathic way as with my mother, I heard a voice that said to me—and you can call this light whatever you want because words really get in the way—”You must go back.” And with all the chutzpah I had, I responded and said, “No!” And the light said, “You have work to do. You must go back.” Again, I yelled with everything I had, “No!” And then I felt and heard a churning, like I was in a blender, and I was coming back down through the tunnel; the next thing I knew, I was in the dentist chair. The dentist thought that he had resuscitated me, so he can have the credit. Paulson: How long did the dentist say you were not conscious? Leary: About ten minutes. Leary: And my life changed as a result of that. Now when I came back, I was disoriented in a way—”Now what?” Because I wanted to stay there, and my sense was, “If I’ve got to be back here, it had better be good.” [Laughter] Because the comparison was that this life was like slogging through mud, compared to the ease and the love that was there. And it was shortly after I had those feelings of “now what?” that I was reading a newspaper fully open; I turned the page, and there was a full-page article on hospice. And the word yes just came up off the page, and I’ve been working in hospice ever since. So that’s my work. That’s my story. Paulson: That is a wonderful place to leave it. Thank you—all of you.
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A N N A L S O F T H E N E W Y O R K A C A D E M Y O F SC I E N C E S Issue: Rethinking Mortality: Exploring the Boundaries between Life and Death
Confronting mortality: faith and meaning across cultures Steve Paulson,1 Allan Kellehear,2 Jeffrey J. Kripal,3 and Lani Leary4 1 Wisconsin Public Radio, Madison, Wisconsin. 2 Middlesex University, London, United Kingdom. 3 Rice University, Houston, Texas. 4 Psychotherapist, Honolulu, Hawaii
Despite advances in technology and medicine, death itself remains an immutable certainty. Indeed, the acceptance and understanding of our mortality are among the enduring metaphysical challenges that have confronted human beings from the beginning of time. How have we sought to cope with the inevitability of our mortality? How do various cultural and social representations of mortality shape and influence the way in which we understand and approach death? To what extent do personal beliefs and convictions about the meaning of life or the notion of an afterlife affect how we perceive and experience the process of death and dying? Steve Paulson, executive producer and host of To the Best of Our Knowledge, moderated a discussion on death, dying, and what lies beyond that included psychologist Lani Leary, professor of philosophy and religion Jeffrey J. Kripal, and sociologist Allan Kellehear. The following is an edited transcript of the discussion that occurred February 5, 7:00–8:30 pm, at the New York Academy of Sciences in New York City. Keywords: death; dying; mortality; near-death experiences
Steve Paulson: Thank you. It is a great pleasure to be back. It has been a wonderful series so far, and I’m quite sure we’re going to go out with a bang tonight. We’re going to take a more existential look at mortality—what it feels like to face death head on, both for the person who is dying and also for the family members left behind. How do people confront their fears? What can they do to reduce their anxiety? What does it mean to accept death? And how does the person’s faith or lack of faith figure into these questions? We’ll consider the spiritual and religious dimensions of dying and also how different cultures in different historical periods have thought about death. It is a lot of ground to cover, and lucky for us we have a terrific panel who can help us sort out these questions, so let me introduce our speakers. Allan Kellehear is a professor of community health at Middlesex University in London. He’s an academician of the Academy of Social Sciences and a fellow of the Royal Society of Medicine. His research explores the experience of dying and end-of-life care, and his books include a social history of dying and, soon-to-be-published, The Inner Life of the Dying Person. Jeffrey J. Kripal is a professor of religious studies at Rice University and associate director of the Center for Theory and Research at the Esalen Institute. He specializes in the comparative study of mysticism and extreme religious states from the ancient world to today. His books include Comparing Religions and Authors of the Impossible: The Paranormal and the Sacred. And Lani Leary works with chronically ill, dying, and bereaved clients. She has worked for more than 25 years as a psychotherapist in private practice, as a chaplain in the intensive care unit of a hospital, and as a counselor in hospices across the country. She has been a professor at George Mason University and a researcher at the National Cancer Institute. Her books include Healing Hands: Meditations for Healing Through the Human Energy Field, and No One Has to Die Alone: Preparing for a Meaningful Death. Welcome, all of you. Lani, let me start with you. You have been at the bedside of many people in their final weeks, their final months before they die. Do you think most people at some point come to terms with their own mortality?
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Lani Leary: There are number of factors that either help or alienate a person from accepting death. In our culture we don’t do a very good job of being with death, and we certainly don’t do a very good job of being with those who are dying. Most of us don’t even ask ourselves—we don’t talk about when we die, we talk about if we die. So we ourselves haven’t given much thought to that. I’ve been with thousands of people as they died, and what they’ve taught me is that it is an imminent death per se that they’re most afraid of. It is the experience of being abandoned, of being alone with the inevitability of their passage. And if we help people to help others, they’re much more accepting of what is inevitable. Paulson: When you say they fear being alone, could you elaborate? Leary: They don’t fear the pain associated with death as much as they fear the pain of being left alone with it. So families who don’t touch, families who don’t talk, families who don’t participate exacerbate the fear and the anxiety of the dying person. If we can change that in our culture, we can change the experience of how a person goes toward their death. Families that do participate, whether it’s through hospice or talking about the experience . . . in other words, just asking open questions, such as “What is it like for you today?” Even the question that sounds stupid at the outset—“What’s the hardest part for you about dying?”—that opens up the experiencing of companioning, and that is what the dying want the most. And if we can do that, we change their fear and we change their anxiety. Paulson: Now, Allan, I know you have also talked with a number of people who are in the process of dying. Is fear pretty much common place? Does pretty much everyone fear death? Allan Kellehear: Fear is an element in most people’s experience of dying, but it is more common in people in midlife. That’s been my experience. The very old—the old—and ironically, children, seem to be less anxious about that. But I agree with Lani’s observation about fear of abandonment and vulnerability. That is a very common fear. The problem, when you review the literature on the fear of death very carefully, is that it falls apart in your hands precisely at the point where you ask what it is about this that people fear. That is a black hole, a bag that has a lot of different things in it. It could be fear of choking, it could be fear of ghosts, it could be fear of meeting your dead mother-in-law again. Paulson: [Laughs] Kellehear: It’s a whole range of fears when you unpack it. So when you start unpacking fear of death, it’s often the fears that you carry around about life ending that, somehow, it seems to raise. Paulson: I was surprised that you didn’t say fear that it just all ends—that sort of primal, existential panic. Kellehear: In my experience, that hasn’t been a big one, but it’s there. The one thing that’s important—and I’ll say this at the outset as a sociologist—the key thing here is diversity. The very social circumstances— diverse cultural, ethnic, racial, and religious experience—that’s really important to get your head around with all of this discussion. I read a paper just recently on the issue about companioning at death, and there’s no doubt that the vast majority of people don’t want to die alone. But increasingly all over the world, in the United States, and in Europe, and in Britain, there’s a small group of people who really don’t want to die with anyone, thank you very much. They want to die at home alone. Paulson: Not even with family members? Kellehear: No, no—not with anyone—preferably alone. And there was an interesting case study in Britain of a woman who was 92 who’d had a heart attack and was admitted to emergency. She was very keen to C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 58–74
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sign herself out. They said, “Well, madam, if you sign yourself out, you could die.” Imagine saying that to a 92-year-old, “Madam, you could die.” Audience: [Laughter] Kellehear: I’m not sure who the news was for. She thought this was outrageous, and she left, got a bus, went home, and promptly died there. She was clearly happy to do that. There is a small group of people for whom, and you see this all the time, die alone at home and are found some days, sometimes weeks later. In Britain, there have been celebrated cases where bodies have been found a couple of years later. Some of those things are failures in health services and failures for community care, but others are not. Others are clearly—and this is a growing number I suspect—people who wish to live their lives independently and to go that way, and for which dying alone is representative of a kind of resistance and a dissent to companioning. So although companioning is incredibly important, it’s really important to understand the diversity of people’s views about this. Paulson: Jeff, let me bring you into this discussion. You are a scholar of comparative religion, history of religions. Is a spiritual perspective or religious perspective fundamental in how people approach the thought of dying? Jeffrey J. Kripal: It is; it’s richer than that though. One consensus among the scholarly community is that a lot of religious beliefs actually probably originated around death. In other words, very strange things happen around human death, a lot of extraordinary things. And then these generate basic religious ideas, like a separable soul. In other words, there’s something about the human being that is not the ego, is not the cultural or social self. It’s not what we’re all in tonight, but it’s deep down in us, and that’s what’s released at physical death. Paulson: When you’re saying strange things happen, what kinds of things? Kripal: Historically, the theory was that the belief in a soul originated with people dreaming or seeing their loved one after he or she had passed, and that, of course, implies that they still exist. The assumption in the anthropological literature in the 19th century was what establishes that it’s just a dream, or it’s just an illusion. But what we see in the literature, as well, including today, is that this really does happen to people all the time, and the people to whom it happens are absolutely convinced that it’s not just an illusion, or just a hallucination. So it looks like this is the origin of the belief in a soul, and of course that’s the key issue here, really, at the end of the day. My own position on this is very close to Allan’s notion of diversity. I think there are two elephants in this room. One is science, and on some level modern people are convinced that mind or consciousness or soul is simply an epiphenomenon of the brain. So what that means, if that’s true, is that death is the end of the soul or the person, just like you switch off a light—there’s that scientific challenge to this traditional notion of the separable soul. On the religious side, what Allan was getting at, and certainly what I want to get at, is that it’s not just a matter of faith or no faith, it’s also a matter of too many faiths. I grew up in a farming community in Nebraska in the 1970s, where the notion of religious diversity—everybody was German—boiled down to whether you were Lutheran or Catholic. That was the extent of the diversity. In that world, when people die, there’s a standard narrative that everyone pretty much buys into. Even if they doubt it, it’s the cultural narrative. We know what a funeral looks like, and we know what happens to the soul after it dies. We know to have a mass said for the person. Whether you’re Catholic or Lutheran, but it’s pretty straightforward, it’s frankly comforting, and it works to help that community through that loss.
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That’s no longer the case in the modern, urban world. I live in Houston, and there is no standard narrative. If a doctor’s going to walk through a modern hospital, he’s going to move through a couple dozen world views in a single day, and they’re going to have radically different belief systems around what happens in the death process. A lot of folks in the modern world—and I put myself here clearly—to the extent that we grant humanity and integrity to other people, to other cultures and other communities, have to be asking on some level who’s right. Paulson: Well, Lani, let me bring you back into this. You have all these experiences with people, their final stage—and we should make the distinction that we’re talking about people dying from illness rather than sudden deaths. Leary: Illness or age. Paulson: Yes. Leary: And 90% of people in the United States will die from age or illness. Ten percent of us will die from sudden, unexpected death. Paulson: So following up on what Jeff has just said, do people talk about this kind of thing in your conversations with them, these more spiritual questions? Leary: If we ask open questions, it invites that. My experience sitting with people who are dying is, when I ask them, “Have you had any contact with a deceased loved one?” Their response is, “[sigh] Finally, someone is asking me.” When I did research at the National Institutes of Health, I worked with children who were dying of AIDS, and I sat with a child who was dying and had three other friends who had predeceased him. He looked up at the ceiling and said, “Johnny, and Timmy, and Sally,” and I said to the nurse, “Go get his parents.” And when the parents came, the child died soon afterward. When I started interviewing parents and asking them, “Have you had any contact with your deceased child,” their response was “Thank God someone is asking me this.” Now, supervisors didn’t want me to ask this stuff, but across the board it was the most comforting exchange that they had, because they needed validation of something that was clearly important to them, that created meaning around this tragedy, that changed their experience of their child’s death. Paulson: What do you make of it when people start saying, “I see Johnny and Sally . . . ?” Leary: I’ve had my own personal near-death experience, and my experience is that it happens, and they’re as close as right here. But it doesn’t matter what I believe. It matters what they’re doing with their experience and how we support them in making meaning. It doesn’t matter what I think. It doesn’t matter whether I prove it or not, but I’ve had thousands and thousands of people telling me the same story over and over again. Tahiti didn’t use to be on the map, and if we had described Tahiti before in these terms, the explorers would have been called crazy. But after thousands of people went to Tahiti with exactly the same description of the people and the language, Tahiti was placed on the map. Paulson: Allan, you have also talked with people in final stages. Have you found that belief or lack of belief in the afterlife is fundamental in terms of how they approach death? Kellehear: My experience reflects some of the recent studies on the role of religion in relation to dying people, which is that it doesn’t really matter what you believe in as long as you believe it deeply. So if you are a religious person and you really believe it deeply, that helps—that is a comfort. If you’re committed to
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being an atheist and you’re secular, that has its own consolation. It’s the people in the middle that have the problem, which is actually the vast majority. Kripal: I was going to say, that’s pretty much everybody. Kellehear: We were talking earlier about the anxiety and some of the fear, and for most people, if their religious beliefs are lightly handled, in a crisis that becomes a problem. Paulson: Explain why, for an atheist, who is sure that it all just ends when they die, that’s a source of comfort, whereas for the people in the middle, who are not exactly sure, that would cause more anxiety. Kellehear: Quite a lot of people who are humanists and rationalists, who believe that when they die, that’s it—people who particularly expect this think about the people they leave behind and the legacy that they leave behind, the work they do—they think much more about it than quite a lot of people who just sort of bumble along and think, “Well, I’ve got another 10 years, I’ve got another 20, I’ve got another 30.” People who are genuinely and deeply committed to the idea that this life is the only life, and that’s the end of it, do seem to take some comfort from doing the preparations, leaving behind supports for the people that they love, and think much more about the existential contribution made by their work life, or their art, or their music, whatever it is that they’ve done. Paulson: We should talk about a phrase that we hear more and more: how important a good death is. What is a good death? Are there common agreements as to what that entails—things that people should do in their final weeks and months? Lani? Leary: In the medical community, a good death would be perhaps described as a death without pain, a death without prolonging or suffering. In a family context, we would use words like an authentic death. In other words, a person died with the same values with which they lived. A person died with choice—when a family made decisions together. I like to say that the person who’s dying gets the vote. So as my father was dying, the mantra became “What would Dad want?” It wasn’t our vote, even if we thought that it could be different for him and better. The “better” was defined by us instead of him, and I think the person who’s dying should get that vote. Paulson: I would think that for some people, they would want to talk about it, even when some of their family members might think, “This makes me uncomfortable;” whereas I can imagine other people who are dying don’t want to go into any details. Leary: Right. So there are different cultures that don’t want to talk about it, and I want that to be respected, for them to have a good death. Again, it’s whose agenda is it. When I’m training hospice physicians, nurses, and social workers, always we have to ask, “Whose agenda is this?” Kellehear: That’s a really good point, and the anthropological literature bears that out. In the anthropological literature the phrase good death has a very specialized meaning, which is quite different from the way we’ve been using it. We’ve been using good death very much in the way in which the medical community uses it, which is that you’ve died reasonably painlessly and you’ve had a few relatives around. But in the anthropological literature, the good death is the death where the family and the community participate and support the dying person. And we haven’t had the good death for quite a long while now, for at least a century, because most of our deaths have become managed. So what happens is that we get surrounded by professionals, the priests and the doctors.
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Leary: And machines. Paulson: People, for the most part, die in hospitals rather than at home. Kellehear and Leary: That’s right. Kellehear: So the idea of the good death really is a managed death; that’s what we’re really talking about. The kind of phrase that [to Leary] you’re using, the appropriate death, bringing the agenda back to the dying person, is actually a very old idea and, in fact, is quite a foreign idea in today’s culture. One of the key reasons why it’s so important for the community to talk about this is that unless you do talk about this, and you debate the issues of what a good death is, you’ll end up surrounded by machines. Leary: Right. It will be by default. Paulson: When do you need to have those conversations? Kellehear: You need to have those conversations now. Paulson: So not when someone is terminally ill. Leary: No, we need to start with children. In the same way that we need to start sex education with children who are five with proper vocabulary, we need to be sitting around that kitchen table, talking about illness, death, choices, values, and opportunities. And we need to bring children to the bedside of their dying grandparents and teach them that it is okay to touch, and to get into bed and to snuggle, and that, in fact, children can participate and can make a difference. And when we teach that, those children’s experience of death is profoundly different because they were able to say, “I know I helped Grandpa. I know I made a difference.” We need to be having those conversations now. Paulson: Is anyone doing that? Is anyone really including their children? Leary: I’ve had conversations with my daughter from the very beginning. My daughter has a dangerous job on the ocean, and she recreates on the ocean. I asked her recently, “If you could choose what kind of death you would have, if it were up to you, what would your perfect death be?” She said to me, “I would drown.” As a mother, I don’t know how she’s going to die, but she spends 90% of her life on the ocean. Do you know how different my grief will be because I asked that question?—changing from tragedy to choice. We can have those kinds of conversations, which she is now used to, but there are layers and layers of these kinds of conversations that open up connection. Paulson: So you’re saying that talking about death does not have to be depressing? Leary: No; I think it’s kind of interesting. I have these conversations at dinner parties, and people know to expect it. “Oh God, what is she going to ask this time?” Paulson: And they still invite you. Leary: I still come back! Kellehear: Actually, when I go to dinner parties, I don’t tell people what I do. Otherwise, I get to eat nothing [laughter]. People do want to talk about this, but they need permission often.
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Leary: They need language, too. They need models. How does it sound? What does it look like? How do we start this conversation? Paulson: Jeff, what kinds of conversations do you think we need to have about this? Kripal: That’s a good question. I’m sort of at a loss for words. I would agree with everything that’s been said. The only thing I would add, and this is just from watching my wife’s parents die in hospice—in our home, actually—over a 2-year period, is that it can be really messy, and that experience can have really destructive effects on the family network, on the conjugal relationship, and all sorts of things, even with the conversations. So I guess my only worry about talking about a good death is that we feel guilty when it doesn’t go how we imagine that good death should go. I don’t want to put guilt on top of all the suffering. Kellehear: I don’t think we were talking about a good death necessarily, but talking about death and dying and loss. And a subpart of that would be, what is the good death? Leary: To you, to each person. Kellehear: It’s important to swap horror stories as well as good stories, and get a sense of that. I was talking to somebody today about Sherwin Nuland, who wrote a book called How We Die: Reflections of Life’s Final Chapter. People might have heard about it—a New York Times best seller. Planted in the middle of How We Die is a portrait of a young woman who was murdered in front of her mother. The woman was stabbed about 27 times by her assailant before they got hold of him, and the mother finally embraced the child on the ground as she was dying. She was barely conscious. But the thing that stuck in the mother’s mind was how calm her daughter looked, which was counterintuitive to the violent experience that she’d had. And that calmness, that half-smile that she noted on her daughter’s face as she died, haunted her for a very long time. This reminds me of the story of David Livingston when he was attacked by a tiger. He describes his feelings when he was being attacked by the tiger, shaken like a rat by a big dog, of feeling fantastic—he felt fantastic. He describes that in great detail. And if you watched this kind of violence as an outsider, as a rescuer, as part of a resuscitation team, as a police officer, or as a mother, you’re seeing and experiencing that dying in a completely different way. Kripal and Leary: [Agreeing] Paulson: You’ll have to explain this. Why would being shaken by a tiger feel fantastic? Kellehear: There are number of physical hormones kicking in as part of the defense mechanism of all animals that get attacked. An opossum, for example, goes very still when he’s shaken by a dog. There used to be wonderful experiments demonstrating this. Of course, they wouldn’t get past an ethics committee today, but thank goodness we had them. Paulson: [Laughs] Kellehear: So we’ve got these incredible physiological recordings of what happens when animals are threatened with death. The same kinds of hormones and neurotransmitters operate in our body as well. Near-death experience is also a part of that. You get people who have had terrible injuries. And when they can talk again, they tell you something completely different from what you would imagine. So I’m only telling these stories to say that it’s really important when we have these conversations to realize that the bad deaths and the horrible deaths may not be. It’s only by having this conversation that you’re even aware that
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there are different perspectives. So a community dialogue around all aspects of death and dying is a good thing. Leary: [Agreeing] Paulson: What you’re suggesting is that it may be much harder for the people who are not dying, for the family members to watch this, rather than for the person who is dying. Leary: It is. Some of the value of all the research that’s come out of near-death experiences is that—I have to tell hospice workers this all the time—what you are seeing of the family members, what you’re seeing on the outside is not the reports of the dying person’s experience on the inside. So in other words, the death rattle that sounds so uncomfortable and horrible is not necessarily experienced by the person who’s dying. That kind of information, back from all the research and thousands and thousands of people who have reported the process of dying, of leaving their body, is important because, again, it changes whether people are even willing to be near a person who is dying, but also their grief afterward and how they attach meaning to this death process. Kellehear: That’s very true. You listen to a Japanese man eat ramen and it’s horrible, but he’s enjoying it. Audience: [Laughter] Paulson: We should bring in a more cross-cultural perspective here. I don’t know if we’ve been mainly talking about dying from a Western perspective, but if we compare this to other countries and cultures around the world, is the experience of dying much different? Kellehear: Death is one of the things that you can write thousands and thousands of books about. Every culture has its own little customs, but when it comes to dying, there are not many different ways to die. I’m not talking about necessarily the difference between suicide and cancer dying and death row, to just take three random examples. In terms of the history of humanity, 99% of our way of dying has been sudden or due to infectious disease. It’s been very quick. Paulson: You’re talking about before the era of modern medicine. Kellehear: I’m talking about before the last ice age, actually. So it’s about one-and-a-half million years ago. Up to the last ice age, people died rather suddenly. So when they talk about dying, they talk about another world journey; that’s where they put dying. So rather ironically, for most hunter-gatherer societies, dying begins after death. Paulson: There’s the beginning of a long journey into the unknown. Kellehear: Yes, but you may actually really die if you don’t survive the trials that you encounter there. Paulson: So this is why at burial sites there might be clothes, artifacts, or weapons even—because you might need those in the next stage, wherever you’re going. Kellehear: Exactly. The normal things you would take in the subway. Audience: [Laughter]
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Kellehear: But after settlement, when people started to die slowly of things and life expectancy increased, then we had this dying in bed with family and so forth. Then there was the rise of the professionals, which really began in the cities—the doctor, the lawyer, the priest—those kinds of people became really important. In modern day, postmodernity or modern society, contemporary society is actually being created in the image of the city. So in that sense, urban modern life creates a kind of dying where we’re surrounded by professionals who are largely taking care of us, and then we get this institutional dying that we’re trying to extricate ourselves from and worry about. In the cultural sense, these are major forms of diversity in dying. But cross-cutting that, the way we think about dying in affluent society is that it’s going to be slow. We’re going to be in a nursing home, or we’re going to die of cancer or motor neuron disease or organ failure. In India and Africa, and large parts of China, that’s not going to be the case, where infectious diseases reign, where trauma, being poisoned by the water or by a snake is still common. So you get that kind of diversity around dying too. But dying is one of those things with remarkable, steady patterns compared to death customs. Paulson: What about different religious traditions? Does it matter whether you are Hindu, Muslim, Christian, or a believer in a particular African religion? Are there different approaches to thinking about dying? Kripal: There are major differences; this really does impact how people experience death and think about death. In the Western monotheisms, it’s a kind of one-life model. We’re created by a singular God and we’re born once, we have one life, and then we die. That’s it. And then you branch off into some kind of afterlife, depending on your deeds. Death has a kind of finality, and the ego, the social ego, the self is imagined as lasting for eternity. You have this language about seeing your loved ones in heaven. It’s the ego itself that survives this process, whereas in Asia, Hinduism and Buddhism, this notion of karma and reincarnation is actually in some ways more interesting. It insists that something survives death but then reincarnates in another body, and in another and another, but the key here is that what’s reincarnating is not the social self, it’s not the ego. Because you can imagine having many, many lives, you were one person three lives ago, and then you were somebody completely different two lives ago, then you were somebody completely different in the last life, and now you’re someone completely different again. So clearly it’s not the ego that lasts. Paulson: So what changes if you believe in that form of reincarnation? Do you live your life any differently because of that? Kripal: I would imagine you must. Life is not one shot. You’re caught in an immense stream of lifetimes stretching back as far as you can see in the past and maybe into the future. It’s a very different worldview, and it must impact how you approach your death. Paulson: One of the underlying questions here is to what degree do our attitudes about death and dying affect the way we live before we’re actually in those final stages? For a 30-year-old in good health, a 50-yearold in good health, if you are thinking a lot about death, are you actually going to live differently because of that? Kellehear: I don’t think so. Leary: I do. Audience: [Laughter]
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Kellehear: If you talk to a lot of people who have near-death experiences, and quite a lot of them are very keen to get into the hospice and palliative care movement, they think that if people only knew that there was an afterlife, it would make a difference. Well, most of human history believed in the afterlife—and I can’t think of a war that it prevented. And I know that’s a negative—that it’s a bit like saying I can’t think of an absence that I can remember. Nevertheless, no country that I can think of—no historical group I can think of—has killed less because of religion. Paulson: But it doesn’t necessarily turn on the question of whether you’re going to be less violent; it’s do you approach life differently in some way if death is more foregrounded in your consciousness? Kellehear: [to Leary] You believe it does. Leary: I think it does. With the reports of people who have had near-death experiences, their life after the experience—not the belief in afterlife, but having seen their death and having seen the other side and come back—most of them report a keener sense of altruism and contribution and making different decisions. For most of them, their lives have changed. Paulson: Okay, so that’s a very specific kind of case, people who have these very dramatic near-death experiences. Leary: It’s an experience rather than a belief. Paulson: What if we do what you were talking about earlier—having conversations about death? Do you live differently if you do that? Kellehear: I think you do. Leary: I think you do. I participate with people who are dying. I’m not afraid of dying. I lean into death. I see it as an opportunity to serve as opposed to pulling away from it and not touching it. My life is very different as a result. Kellehear: I used to run groups for people who had advanced malignancy. They would come for 8 weeks, and they would have readings that they would have to do that were about their own health. They would have other readings about their social adjustments and the social troubles that were reported in the literature. And then there was a section for 2–3 weeks where they had to talk about death and dying. We evaluated these groups, and at the beginning, if you asked these people about the program, they would always say that it was the death and dying stuff that they didn’t like. They would wish that wasn’t in it, but it was nonnegotiable, so they have to do it. When they were through the program, that’s the one they liked the best. That was the one they got most out of. It made a huge difference in talking with family, preparing themselves psychologically, and preparing themselves socially. Many of them hadn’t even made wills. There were, particularly in an older group, people who felt that making a will would make it real, might actually bring it on. The sting was taken out of that. Kripal and Leary: [Agreeing] Kellehear: So it does change behavior. Talking about death and dying does change behavior, not only for people who are terminally ill, but for most people. If you sit down and have conversations on a regular basis, you do alter your behavior. And nearly all the evaluations of death education programs that we have in the United Kingdom and in Australia have shown that. C 2014 New York Academy of Sciences. Ann. N.Y. Acad. Sci. 1330 (2014) 58–74
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Paulson: That makes me wonder if every high school or every college should have a death studies program. Should that be a requirement? Leary: I led a death studies program at George Mason University with graduate students, and I didn’t care about the final exam with the dates and theorists’ names. As the final exam, I would ask them, “What is your greatest fear about dying?” One young man who was 26 said, “My greatest fear is that I will one day be married and have children, and my parents will be dead. My greatest fear is that my children will not know their grandparents or their values.” I said, “What are you going to do about it?” Always, what are you going to do about that fear? I’m encouraging them to lean into their fear and make it different. And so he videotaped his parents and asked them questions about what they wanted their nonexistent grandchildren to know. Another young woman’s greatest fear about dying was that she was the only child, and she knew that it would be up to her to write the obituary and eulogy for her parents. I said, “What are you going to do about that fear?” She flew home to interview her father and said, as I did to mine, “Let’s write your obituary together.” And it didn’t surprise me that a year later a wonderful letter came from her saying, “Thank you so much for making me do this, because my father did die and I was prepared. I was grateful, and it made a difference.” So how will you lean into your greatest fear? How will you make it different? You can do that, and then you won’t have that same death anxiety—you won’t pull back. You can all do that. What is your greatest fear about death or dying? Kellehear: Death education is like health education. Good death education addresses the concerns around the troubles that you can prevent, and the things you can’t prevent, you can have reduced, a bit like wearing a seatbelt. Not wearing a seatbelt, the chances are very high that you’ll be decapitated in an accident. Wearing a seatbelt, there’s a high chance you’ll lose your spleen. Better to lose your spleen. You’re better off than without a head. Death education is a bit like that. You don’t lose all your fear. You’re not a new person, but you’re better off with it than without. Paulson: We’ve been talking about the history of attitudes about dying. One of the things that’s striking about the culture that we’re living in now is that it’s far more secular than it used to be. Obviously there are differences depending on which particular cultures we’re talking about, but there are many more people who we would identify as having secular values now than in a lot of previous ages. Has that changed the conversation about death and dying, the fact that religion is not just a given? Kellehear: I think it has. Kripal: It has profoundly shaped the discussion. This is what I was trying to say before. If you grow up in a culture in which there’s one story about what the human condition is and what happens to us after we pass, that’s a pretty simple thing in many ways. But we don’t live in that culture, and so we’re thrown into confusion about death, in particular, because there are all these competing stories. There are all these competing narratives in the secular space about what death is, and so it’s like trying to listen to a radio, 5 stations or 10 stations at a time. It sounds like garble, and so people just pull back and they despair. That’s the negative part of it. The positive part of the secular context is that it allows us to ask other questions and to be a bit bolder. All of the near-death literature is secular literature in some sense. It’s moving away from a singular religious worldview, and what we’re seeing is an emergent new worldview, at a very early stage. That’s why it’s so confusing; we’re just not there, and we may not get there. I’m not suggesting we need a singular worldview. I’m saying, in a secular space, there are many competing stories. Paulson: What do you think that emerging worldview is?
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Kellehear: It’s a work in progress. It isn’t just that death has got multiple story lines. It only has multiple story lines because life has multiple story lines. It’s been a long while since life has had a single story line—at least 50 years; some say longer. In the 16th century, the Christian church used to say that when you married you would stay married until death. Well, easy. Look at the demography of death. Basically, you get married at around 15, 16, and one of you will die about the time you’re 22, 23. So the average life of a marriage would be, what, 7 years? Any idiot can do that. Kripal, Leary, and Paulson: [Laughter] Kellehear: Today, if you marry somebody and they lay that on you, you could be with this person for 50 to 60 years. You’d want to be deeply in love with that person, down to the genes, to survive that. The life game has changed, so of course the death game has changed. And what characterizes modernity is that people then have to go back to their actual experiences and think, “What are my experiences?”—because that’s the only solid thing that we all have. That’s where the near-death experience comes in. People will say, “Well, this is the experience I’ve had. What’s the story I’m going to make of it?” Leary: Right. What is the meaning? It goes back to meaning and how we can settle into it. Paulson: So you’re saying that one of the crucial conversations to have as someone is dying, and probably on both ends, for the person dying and also for the family members, is to have those conversations about meaning, which I presume involves maybe some sort of life review. Is that important, life review? Leary: Open questions, yes. What does this mean to you? What is the hardest part? What surprises you in this journey? What do you want? What do you need? What do you value? How can I be with you?—all of those without any assumptions or expectations on the part of the supporter. Just open questions, so that they get to define their journey I think would be helpful. And the same with those bereaved that are left behind: what would assist you? Some people want to talk about it, some people don’t. Some people want the support of peers; some people want the journey alone. What is your story? What is your meaning? Paulson: We only have a few minutes left before we turn it over to the audience. I want to get a little more personal before we do that. I’m going to ask each of you this question: Do you fear dying yourself? Does this cause you much anxiety? Jeff? Kripal: I fear death, sure. I’m not sure it causes me a lot of anxiety, but it would if I got the wrong diagnosis with the wrong news. I’m not immune to this in any sense. Paulson: Lani? Leary: Well, I died and I didn’t want to come back. I didn’t tell my story for about 5 years because at the time I had a 2-year-old child, and I thought to tell that story to other mothers would be to be banished. But I still remember it so profoundly, and I want to go back. I won’t do anything to make that happen because I also know what a gift this is, but everyone has a perfect death, and I want to use my dying in the same way that I use my life. I want to be teaching. So I’ve asked this question again in my family and at dinner conversations: “If you could go, how would you go?” My husband wants to be hit by a bus. That would not be my choice. I want a good three to six months with an illness, so that I can talk about it and teach people how to be with it. But no, I don’t fear it. Paulson: Allan?
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Kellehear: Yes, I think so. When I was in Australia, I got my first job in a very small country college. I was not in the Outback, but it was very, very remote. We lived half an hour outside the college, surrounded by wheat fields. The summers used to be around 48°, 46° C. I don’t know what that is in Fahrenheit—it was very hot. I used to entertain myself by going to art classes in the evening. One day I set off on this road; it was dead straight, dead flat, and as I was driving along I saw a dust storm to my left—huge thing, red, thick, swirling, moving across a wheat field coming at me on my left, and everything it passed disappeared under it. Now that’s not that unusual except that on my right was a thunderstorm. The thunderstorm was a very bad electrical storm, and it was coming from my right, and it looked like they were both going to meet on the road and I was driving into it. It was too late to turn around—this is a true story. I just stopped the car. The car was engulfed by this red dust, and the car started shaking—I had a small car in those days; this was not long after I had been a student—couldn’t afford much—and I was being buffeted around. I thought, “I wonder if the car will turn over.” I was raised in Sydney as a city boy, so I never had come across anything like this, and all I could think was, “Shit.” I hung on to the wheel, and after about 90 seconds the road appeared before me again. All I can say is I’ll wake up one day maybe, and I’ll only have a few seconds, or a few minutes, or maybe a month, and I’ll be frightened. I’m not a believer in anything, but I hope the old road will appear before me again. Paulson: One final question for each of you, and I think I can guess how some of you will respond to this, but what do you think is going to happen to you after you die? Will there be some element of your consciousness or your soul, to use the religious word, or do you think this all ends once your brain stops functioning? Jeff, let me start with you. Kripal: I actually do believe in a soul, which isn’t the same thing as an ego. I’m not at all convinced that the “I,” this thing up on stage, will survive. I sort of doubt it. I say that not out of belief; I say that out of reading too many stories and talking to too many people and encountering these things in other human beings. And I think Lani is right; they sort of form a gestalt at some point that’s extremely convincing, even though the pieces and the details may be functions of the culture or the content. Paulson: Lani? Leary: I’m ready to shed my ego. That would be a great part of the journey, and I do believe that my soul goes on. I do believe in and have seen deceased loved ones, and I believe in the connection. Yes, it’ll go on. Paulson: And Allan, I’m guessing you do not believe it’s going to go on. Kripal: He left that open with the road. Kellehear: [Laughs] Well, I was raised in a single-parent family by a Japanese mother. Her religion was Shinto. And the only job she could get where she didn’t have to speak much English was as a housekeeper in a Catholic monastery—10 priests. So I stayed there from the age of seven until I got my first degree. Now, can you imagine negotiating Shinto beliefs with Catholic, Christian beliefs? What this has given me is a lifetime where I’ve forfeited believing anything. Kripal: [to Kellehear] That was my point. Kellehear: So what I’m left with is hope, and [to Kripal] you’re right. My answer about hoping to see the old road again is probably where I’m at, but I wouldn’t like to lose my ego. I quite like it [laughter].
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Paulson: Okay, that’s a perfect segue here. There are, I believe, a couple of roving mics, so if you want to raise your hands, we have about 20 minutes or so for questions. Audience member 1: What is your opinion of the Death Cafe movement? Leary: Love it—have them, yes. A death cafe is where strangers come together to share coffee or a meal and explore their feelings, questions, and experiences around dying. But it’s often strangers coming together, because often families won’t start that conversation. There’s a great promise in that. Audience member 1: We’ve been very successful here in New York. Leary: Great—glad to hear it. Audience member 1: We’ve been running now for a year, and we’ve had up to 75 people joining at this time. Leary: And have you had them over and over again? Audience member 1: Every month—every third Wednesday. Leary: Do the same people show up? Audience member 1: We have some repeats, yes, but we have many, many new. Leary: I’d be so interested if, after they leave the cafe, they’re going to do something different as a result of that conversation. Audience member 1: One of the things that I ask them to do is to take the conversation from where we are, and the table they’re at, home. Leary: Yes! Audience member 2: What is your approach to dealing with someone who has dementia while they are dying? Leary: I work with people with dementia and Alzheimer’s the same as I work with anyone who’s not, and I teach caregivers. I’ll run into caregivers who will be in tears, and I’ll say, “What’s the hardest part?” Recently a woman said, “I see my mother every day, but she doesn’t know it’s me.” And I’ll say, “What is your goal?” And she says, “To love my mother and have her feel loved.” And I say, “Does it matter, then, whether she knows it’s you? Can you still love her?” If I have to repeat the same thing every single day to someone, that doesn’t get in the way of my caregiving, of my comforting, of my loving. That’s what I would say. Kellehear: There have been some very interesting first-person accounts of people living with dementia who have been able to write and record their thoughts right up to the time when they were unable to. It’s a complex and mixed experience, and, believe it or not, the accounts we have so far suggest that there are positives in it for the person who has dementia. And it cautions once again the idea of believing what you see. You need to be very careful about being overwhelmed by your perception of what’s being lost to you. You may knock at my house. I may not answer, but it doesn’t mean I’m not home.
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Paulson: So in a practical sense, we should be a little careful about what we say in front of people. If it seems like they are nonresponsive, we should not assume that they are not able to listen to the conversation. Kellehear: Just another day at work. It’s exactly what you’d be doing at work. Leary: And in the same way with people who are in comas. I always speak to them as though they are fully there and fully themselves. I’ve had people come out of comas and be able to repeat to me verbatim what I said to them. Audience member 3: What do you think of the humanist notion that we live on in the impact that we’ve had on other people? Kripal: That’s all correct. We obviously do live on in all sorts of ways in our work and in the people we touch, and of course if we have children we live on genetically in some ways, too. So there are clearly all sorts of afterlives that we have. But that’s not really what people mean by surviving bodily death, at the end of the day, when they’re coming out of a near-death experience or they’re speaking religiously. That’s a lovely way of putting it, but it doesn’t answer the fears and the hopes of the majority of human beings on the planet. It takes a lot of courage to adapt that worldview—and a lot of education, too. And most of the planet does not have that kind of background. I think it’s hard. Leary: I also see this as an opportunity at the deathbed, for instance, to be able to say to someone who’s dying, “How would you most like to be appreciated?” or “How would you most like to be remembered?” To have that exchange lets them know that they’ve left a legacy that can live on and on. That’s a question that we could offer them, to help finish some business. Audience member 4: How does morphine affect the consciousness of a dying person? Kellehear: I did some work on this recently with some physicians in the United Kingdom. There’s a growing consensus that this is a problem. There’s no doubt that, particularly with cancer and some types of organ failure, we need strong painkillers. It’s not clear at all that we need to use opiates at the level we currently do. We found that the number of hallucinations rises with the use of opiates, and interestingly, deathbed visions, which have a prevalence in resourceful countries of around 30% to 40%, drop like stones in hospices and palliative care that use heavy opiates. And that’s interesting because deathbed visions are usually quite comforting, and hallucinations are usually quite distressing. We do need to do some rethinking around symptom management, particularly in the last 48 hours of dying. That would be my observation. Audience member 4: But it seems to me that it deprives a person of the process of their own unraveling and passage. Kellehear: Yes, it does, but bear in mind that it’s often done as part of a symptom management regime, and symptom management regimes are, historically speaking, still in their infancy. Quite a lot of people don’t die under palliative care; only a very small group of people do. And generally speaking, the people who are under palliative care, most of them have cancer, and that could be very difficult to manage in the last stages. What hospice and palliative care need to do is perhaps finesse the concerns with pain control, with a drug that possibly allows dying people to have a little more alertness and control toward the end than they currently do. We oversedate dying patients at the moment. Paulson: Lani or Jeff, do you want to add anything to this?
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Leary: The only thing I would add is that, while morphine may alter some consciousness, pain also alters consciousness incredibly. So if you’re wanting the end of life to be more unraveling, I guess I see pain as a huge unraveler. People aren’t able to focus, concentrate, be present, and all that. I don’t know what the answer is, but I do know that pain gets in the way of that ending. Kellehear: We need to finesse the pharmacology—that’s all. We’ve got alternatives to morphine. Kripal: It’s a great question. I’ve seen morphine use in hospice, and I’ve seen it close. It’s key to the very end in many ways. But the other thought I had, listening to you and thinking about the question, is that one of my intellectual heroes, Aldous Huxley, went out intentionally on LSD. He had his wife inject him with it as he was actively dying. That’s a different kind of answer. There are other options, but I wouldn’t suggest that one as a legal option, however. Kellehear: Why not? Kripal: People have thought about this, you know? It’s a great question; you’re probably right. You’re probably not going to be there when you’re dying if you use too much. Paulson: It’s worth mentioning too that there have been some clinical trials done with hallucinogens, especially psilocybin, for terminally ill patients, and apparently it has helped with that kind of existential panic. Kellehear: If you look at the international literature, terminal sedation is on the increase. There is no real understanding about why it’s on the increase. There are pharmacological alternatives to straight morphine, particular end of life, and there’s increasing dissatisfaction around the use of morphine in late-stage dying. Some of that has been already shown to be the politics between doctors and nurses, in particular. So there’s clearly a problem there. Terminal sedation practices vary widely, depending on what state in the United States you’re in and what country we’re talking about. Certainly in Britain, it’s on the rise, and it’s a worry; it’s in public discussion at the moment. Audience member 5: Lani, you mentioned that you had a near-death experience. Would you share that with us? Leary: It was a long time ago. I was 29 years old. I went to the dentist’s office. They were using laughing gas at that time. I had never had a drink, never used drugs, never smoked—hardly ever took aspirin. I think my body just said, “What is this?” And I went into anaphylactic shock, so one minute I was in the dentist chair; the next minute I was up on the ceiling looking down at this body. And as I looked at my 29-year-old body, I felt as though it was just a piece of clothing. I had a fondness for it; I knew it. I had used it well, but it was time for it to go to the Salvation Army. I wasn’t connected to it. I felt no fear, no pain, no anxiety. The dentist was kind of freaking out, and I was trying to talk to him from up there to say it was okay, but of course he didn’t get it. And I had no sense of time. There was no anxiety, there was no sense of passing time, so I don’t know how long I was up there in the corner. But the next thing I knew, it was as though I turned around and I was going into a tunnel. And my mother who had been dead for 15 years was right at the tunnel. I can still see her. She was beautiful and whole and vibrant and healthy, and she did not die that way. She was healed. Her arms were outstretched to me. And we communicated telepathically, so our mouths didn’t move, but I thought and she received, and she thought and I heard. And I thought, “I miss you.” And what came back to me was, “I know,” as though her arms were around me. I was not able to tell her I loved her before she died, and I said, “I love you.” And she said, “I know.” My ego was not present, because my ego here
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would have said I wanted to stay with my mother for years and years and tell her every single first date I had, and my wedding, and all about my child. The ego was not present, because I knew from a soul level at that moment that she had always been with me. We had never been apart. I knew that; I still know that. And so with that, I was drawn into a tunnel that was almost an opalescent blue—beautiful. At the end of the tunnel was a pinpoint of light, and I couldn’t do anything but go toward it. I went toward this light, and as I got to this light, it became bigger and brighter, almost like looking into the sun, but it wasn’t painful to look into this light. The light was in front of me, and the light was around me, and then I was in the light, and then I knew I was the light. But as a drop of water in the ocean is not separate, the light and I were made of the same substance. And I was home. It was—bliss doesn’t come close to the word, but I knew in that moment that I was forgiven for anything I thought was unforgivable. I was loved beyond all measure in a way that I’d never been loved before, and I wanted to stay there. And again, in the same telepathic way as with my mother, I heard a voice that said to me—and you can call this light whatever you want because words really get in the way—”You must go back.” And with all the chutzpah I had, I responded and said, “No!” And the light said, “You have work to do. You must go back.” Again, I yelled with everything I had, “No!” And then I felt and heard a churning, like I was in a blender, and I was coming back down through the tunnel; the next thing I knew, I was in the dentist chair. The dentist thought that he had resuscitated me, so he can have the credit. Paulson: How long did the dentist say you were not conscious? Leary: About ten minutes. Leary: And my life changed as a result of that. Now when I came back, I was disoriented in a way—”Now what?” Because I wanted to stay there, and my sense was, “If I’ve got to be back here, it had better be good.” [Laughter] Because the comparison was that this life was like slogging through mud, compared to the ease and the love that was there. And it was shortly after I had those feelings of “now what?” that I was reading a newspaper fully open; I turned the page, and there was a full-page article on hospice. And the word yes just came up off the page, and I’ve been working in hospice ever since. So that’s my work. That’s my story. Paulson: That is a wonderful place to leave it. Thank you—all of you.
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