Facing Death & Dying

MAUREEN CAVANAUGH (Host): I'm Maureen Cavanaugh. You're listening to These Days in San Diego. There's nothing more certain about life than that someday it will end but death is something we almost never talk about. Perhaps that's because most of us don't deal with death in our daily lives anymore. For most of human history, death and dying were never too far away from the mainstream of life. And that is still true for the many dedicated professionals who help dying patients prepare for the end of their lives. Last fall, Tom Fudge discussed how modern America deals with death and dying and the role that hospice and palliative care play in the process. His first guest was Professor Rebecca Moore, chair of the Religious Studies Department at San Diego State University, who teaches a course on death and dying. She is co-author of the book "A Portable God." Here's that interview.

TOM FUDGE (Interviewer): Professor Moore, how do most people deal with dying and death in America today? And what makes our modern customs in some way unique, different from those of other countries, different from what we did in the past?

REBECCA MOORE (Author): Well, I think in America today there is really a lack of tradition and a lack of knowing what exactly to do. We take our cues from television programs, “Six Feet Under” and so on but, unlike other cultures where there are very clearly delineated rites and rituals both before death, during the process of dying, and after death, those seem to be absent in modern America, although I do think that that’s changing.

FUDGE: Of course, everybody has some story about death and I remember one that was told by a couple of friends of mine whose – they were a couple who lived in a house in Minnesota and the woman’s daughter – I’m sorry, the woman’s father, who was fairly old, died, just in their house, died in the hallway, just dropped down and died. And they had no idea what to do and so what they did is, they went to the Yellow Pages and looked under ‘U’ for undertaker, that’s what they did. And is that kind of what you’re talking about?

MOORE: Yeah, I think that that part of the problem is that death is hidden and that people are whisked away to the hospital, assuming that they’re alive when they’re picked up by an ambulance and then the whole process of dying takes place offsite. Thomas Lynch, who wrote “The Undertaking,” made a very insightful comment when he said, in the 19th century they took the – they put plumbing inside the house and they took death outside the house, and he did not think that that was necessarily an improvement on culture. And by taking death outside of the home and the family, we have progressively become removed from the reality of death.

FUDGE: When we talk about people who are preparing for death, how do people do it? And how have changes in religious beliefs affected us? I’m thinking about the fact that a lot of people today just don’t even think about the afterlife and they don’t believe in it. How significant is that when you’re approaching death?

MOORE: Certainly if people have a strong belief in the afterlife, they may get great comfort of what they think’s going to happen with the next step. Others might be very fearful that they’re going to receive eternal punishment. Still others might believe, you know, this life is all there is, I wasted it, and be very depressed. So I think there’s a range of reactions and emotions depending on how one views how they live their life and what their expectation is.

FUDGE: Let me get back to that quote that you mentioned, the fact that we put plumbing in our houses but took death out of our houses. How did that happen? I mean, if that’s a bad thing, whose fault is it?

MOORE: I think there are a variety of factors. Certainly, the introduction of embalming during the Civil War was a major factor in preserving the body. And the fact that as America became very industrialized, bodies couldn’t, you know, stay at home very – for very long, and so there was this whole movement to professionalize the funeral industry, which led to what exists today and, of course, Jessica Mitford in the 1960s wrote an expose of the funeral industry which led to major reforms by the Federal Trade Commission, which today, when people face death, they – or, you know, deal with a dead person, the funeral industry has to disclose a range of prices and options that before they did not have to do.

FUDGE: How does the way we deal with or prepare for our own death differ from the way we deal with or prepare for the death of a loved one?

MOORE: Well, I think that in many – Well, I don’t know. I can tell you from personal experience that, you know, our 15 year old daughter died more than ten years ago and we knew that it was coming so we had a long time to prepare mentally to the extent that that’s possible with the death of a child. We had some time to mentally get used to the – her loss and to actually say goodbye whereas in other deaths that I’ve experienced, for example, you know, my sisters and nephew died in Jonestown in 1978, I had no preparation. And it’s interesting to talk to parents whose children die because we think, having gone through that experience, we think it’s a good idea to know it’s coming, to be prepared. But we’ve talked to other parents whose children died in tragic accidents where they had no opportunities to say goodbye and they would say, oh, we couldn’t stand the thought of knowing, you know, that Susan was going to die. You know, we’re glad that it happened suddenly. So it really depends on, you know, how we process those, you know, what happens to us.

FUDGE: When I think about my own family, I think about my great grandmother who was an immigrant and she had seven children and she saw three of them die. One of them died during the boat journey from the old country, and then she had two boys who were killed in a blizzard that swooped into South Dakota during the winter, very unexpected. And I guess I compare her to myself, and I think that I am so terribly naïve about death compared to a lot of my ancestors, and I’m wondering if you feel that that is it true, that a lot of Americans today are just very naïve about death?

MOORE: I would agree that – that some are naïve but when I see students in my class in “Death, Dying and the Afterlife,” you would be amazed at the – the extent of personal tragedy that they’ve experienced from the loss of, you know, siblings, parents, aunts, uncles, as well as grandparents and pets. And then, furthermore, just the extent of loss that people experience due to disability, divorce, moving and so on. And so, in some respects, we are naïve but in other respects at least the students at San Diego State, I think, are unfortunately very experienced in tragedy.

FUDGE: Let’s take a kay from – a call from Kay who’s at UTC. Go ahead, Kay.

KAY (Caller, University Towne Center): Hi. I guess I’m a grief expert, having lost like several people and my dog in the last year. And I just wanted to comment on comparing and contrasting two different programs on grief and acceptance that I went through, one at Hospice down in Hillcrest and another one based on the Grief Recovery Handbook, and I can’t say enough about the Grief Recovery Handbook program. And I think after having one of the two leaders who guided this ten-week workshop, told the participants that we’re more versed now than some therapists are in working with grief and death and that’s kind of sad.

FUDGE: Well, thank you very much for calling in. Rebecca, is there anything you would like to say in response to Kay?

MOORE: Yeah, I would – I would agree with Kay that we can intellectualize the process of death and dying and teach it in school and learn about it from books but until you have some sort of experiential knowledge, really, people don’t understand. And that’s why there are groups like Compassionate Friends and self-help groups and other grief groups where people know exactly what you’re talking about and exactly what it feels like in a way that really professionals cannot fully understand until it happens to them.

FUDGE: Rebecca Moore is a professor of religion and chair of the Religious Studies Department at San Diego State University. She teaches a class on death and dying. And now let me welcome a couple of other people to our conversation. They are Jan Cetti and Charles von Gunten. Jan is the CEO of San Diego Hospice. And, Jan, thank you for coming in.

JAN CETTI (CEO, San Diego Hospice): Thank you, Tom.

FUDGE: And Charles von Gunten is a medical doctor and provost of the Institute of Palliative Medicine. And, Charles, thank you.

CHARLES VON GUNTEN (Provost, Institute of Palliative Medicine): Delighted to be here, Tom.

FUDGE: Jan, our last caller mentioned San Diego Hospice and so let me ask you what is hospice care? What did that – what does that mean?

CETTI: You know, hospice care, all of the activities of our organization are really aimed at preventing and relieving suffering and not just from pain but at a very vulnerable time looking at all the ways that humans suffer at the end of life and so hospice care is really – hospice is a method of delivering palliative care, which is another part of our name, which is really aimed at comfort and the best quality of life that can be achieved.

FUDGE: What is the San Diego Hospice? Is it a place?

CETTI: San Diego Hospice is a corporation. There is a – We take care of a thousand patients a day around the county, mostly in their homes. There is a place. There is – We have a specialty hospital, a unique 24-bed facility in Hillcrest. And that is for people who need the intensive care to make sure that they are as comfortable as they can be. But the bulk of our patients are cared for in their home.

FUDGE: So when we talk about a patient being in hospice, they’re not necessarily in some place that is removed from their home. They might be in hospice in their own bed.

CETTI: Right. They may be – they would be getting hospice care in whatever they call a home or even the homeless people. You know, whatever they’re calling home would be where hospice care is delivered.

FUDGE: Let’s take a call from Maria, who’s calling from San Marcos. And, Maria, go ahead. You’re on the show.

MARIA (Caller, San Marcos): Hi. Good morning. I wanted to mention that I believe that this is a cultural thing because we are from Mexico City. My husband’s from India. In India, when a person passes it’s a very personal thing. They prepare bodies for cremation. Family members actually prepare bodies for cremation. It’s not done outside of the home. And in Mexico, we are – we celebrate the Day of the Dead and so we never forget those, you know, those loved ones that have passed on. But we accept death as a part of life and so it’s talked about and it’s embraced as a very – at a very young age. So I think that…

FUDGE: And it sounds like – Jan, it sounds like you’re saying it’s embraced in a way that you don’t see people embracing it in this country.

MARIA: Yes, I believe so because, for me, as a very young child, I spoke to my grandmother about death and dying. And so when we had deaths in the family, it wasn’t a foreign thing. It wasn’t something that was, you know, just hushed and quickly, you know, went through the process.

FUDGE: Okay.

MARIA: It was actually a long time that people – you know, that family was together.

FUDGE: Thank – thank you very much, Maria. Jan, I guess, at San Diego Hospice, you’re dealing with lots of different people from lots of different cultures.

CETTI: That…

FUDGE: What would you like to say about her comments?

CETTI: That’s right, Tom, and I think Maria is hitting on a very important point and that is that people, their beliefs, their traditions, very much dictate the attitudes and responses to death and within the family with – for the individual. And it’s been very important for us at San Diego Hospice to adopt what we call a cultural humility where we approach each person with the idea of tell us what’s important to you, tell us how you would – how we can best comfort you, and getting into that dialogue and that partnership is really important. The other thing, if I can just say, you know, talking about death leaving the home and it being very different in other cultures, you know, I do believe that in this culture we’re starting to see a revolution where people are wanting to reclaim end of life and death.

FUDGE: Umm-hmm.

CETTI: They think, you know, I blame it on my generation, the crazy boomers that came through and revolutionized childbirth and started Lamaze and you’ve got to prepare for this. It’s a life event, it’s not a medical event. And I think the same thing will happen as this group approaches end of life, is it’s not – it’s a life event, not a medical event.

FUDGE: Rebecca, how would you like to respond to our caller’s comments?

MOORE: I would agree with Maria and Jan that there’s certainly a wide range of cultural approaches to death where death is ever present. I think of like the little skeletons, you know, in Mexican culture. I think of Tibetan Buddhists reading the Tibetan Book of the Dead and meditating on corpses and planning and thinking about death all the time in a positive way. It’s not morbid at all. And that’s one thing when we study other cultures, we find out just the incredible diversity with which people approach this life event and, as Jan said, it’s not a medical event. It’s a part of life in the same way that birth is. It’s an incredible mystery that we’ve tried to tame and yet, ultimately, is not tamable.

FUDGE: Let’s go to Harold in Vista. Harold, go ahead, you’re on the show.

HAROLD (Caller, Vista): Hi. My grandson died around twelve weeks ago from a malignant cancer.

FUDGE: I’m sorry to hear that.

HAROLD: He was – he was four and a half years old. I’ve been going through hospice bereavement and of course the main thing is coping right now. And I’m just amazed. You know, when you hear of a child four and a half years old dying like that, everybody goes ooh and ahh, and yet when I’ve been in these bereavement sessions through Hospice, I’ve noted that it doesn’t matter whether it’s a husband of 73 or a child of 20, it’s all the same thing. And about two or three weeks ago, I met somebody who, you know, who was indicating it’s due to original sin or it brings strength to you when somebody dies, and I just couldn’t believe anything like that. And it annoyed the heck out of me that original sin, how can you claim original sin to a one-year-old or a four-year-old? But then when I walked away, you know, I thought about it. His wife had died two years ago and that was his way of coping, his way of accepting. And, you know, I – I’ve been, you know, I’ve been very, you know, glad that I had someplace to go and that Hospice also offers this bereavement thing. Of course, it’s, you know, the – humans compared to the animal world is so different. When an elephant calf dies and the elephant – and the mother stands above him, kicks the calf, tries to get the calf up, and the calf doesn’t get up and then the elephant walks away, it’s forgotten. But with humans, it’s just the hole left in the heart and it’s just incredible how, you know – It’s bad enough that man kills man in wars and different ways and accidents and things like that but then when nature also, you know, does this and spending six months at L.A. Children’s Hospital seeing children, you know, with terrible cancers. It’s just terrible but…

FUDGE: It is. It is.

HAROLD: …what I basically want to say is it’s the coping thing that’s very difficult. And I’ve seen people who are still coping after five or ten years. It’s just incredible, the amount of grief we’re left with. But I do thank Hospice for not only extending the help that you have, and he died in the home, but also afterwards in terms of bereavement, which is so important.

FUDGE: Okay, well, Harold, thank you so much for calling in and – and, of course, my condolences for whatever they’re worth. Coping, I guess it’s something that takes a long time and certainly something you can’t rush. Dr. von Gunten, would you like to jump in on that?

VON GUNTEN: I really appreciate Harold describing how he felt about his grandson dying and pointing out that the experience of grief is normal. That it is intense, it feels awful, and it’s expected after a death. And it’s after, whether it’s a four and a half year old or a forty year old or an eighty year old, it is normal to feel intense feelings and they go on for a long period of time. Rebecca made the point that our society now doesn’t give cues for how to cope, particularly American society is about being cheerful all the time and we get three days bereavement leave at our job and then you’re supposed to suck it up and move on. One of the things that’s so important about hospice care and then what everyone needs to learn is there is a usual way. There are – People wonder, what should I say, what should I do when I know someone that has lost someone like Harold has lost his grandson, needing that kind of guidance. That’s why hospices are professional organizations. They have the experience, they know what to do, trying to help that feeling that I don’t know what to do and I don’t have anywhere to go, I don’t know who to ask.

FUDGE: And my guests are Charles von Gunten, Jan Cetti, and Rebecca Moore. Rebecca Moore is a professor of religion at San Diego State. Jan Cetti is CEO of San Diego Hospice, Charles von Gunten is a medical doctor and provost of the Institute of Palliative Medicine. Charles, I do want to talk about palliative medicine. Explain what it is. What does that mean, first of all.

VON GUNTEN: Palliative medicine is the newest subspecialty of medicine that is the specialty of relieving suffering associated with advanced illness. It got its start in hospices. We learned a lot over the last 30 years about how to relieve suffering. Our ability to relieve suffering now is more powerful than ever in the history of medicine. This specialty brings – makes it practically available for patients and their families. The thing – the broad theme that I heard across the previous callers are the questions, what do I do? Who can help me? There is a body of knowledge to help. People shouldn’t feel like suffering with advanced disease is inevitable. That’s the reason for the new specialty and although we first got started in hospices, what we have learned shouldn’t be saved up and used only for the dying. It is also useful earlier in the course of illness. People shouldn’t fear suffering. It can be relieved.

FUDGE: One issue that comes up in this whole discussion is the issue of hastening death and Oregon has a law that allows people to hasten their death; I think that’s the only state that does. How does that relate to this issue of palliative care? And do you have an opinion on hastening death and whether that’s a right thing to do?

VON GUNTEN: I think the political and community debate around hastened death is a feature of the fear that Rebecca described. People feel they will be overwhelmed. They are afraid if they have advanced disease, they want to know that they will be able to have some control, that there is some hope. They do not know that competent professional help is available to relieve the suffering that can occur. So at San Diego Hospice and the Institute for Palliative Medicine, as elsewhere around the country, it’s common for patients themselves or in my experience, more frequently family, to bring it up. Once it is clear that suffering can be controlled—and that’s not just the patients but the suffering of the family—the concerns about hastening death simply evaporate. That’s what’s most important, to focus on what it is that we can do, that each family member can do. That the doctors, the nurses, the social workers, the chaplains, everyone has a role to play and when competent palliative care is available, the wish for hastened death essentially evaporates.

FUDGE: Let’s get back to our callers. We’ve got Anthony in San Diego. Anthony, go ahead.

ANTHONY (Caller, San Diego): Hi. I was a volunteer massage therapist with San Diego Hospice for several years and I got a positive TB test so I’m no longer doing that. But I also had my grandparents die several years ago and I got to work with them as well before they died. And my comment is just basically – it’s to kind of go along the same vein that you’re through right now, is that it seems like the suffering that we put people through by not allowing them to end their lives with dignity is very selfish because it seems like the family members, at least in the experience I had with my family, is that the family members kind of made my grandparents suffer much longer by telling them they needed to fight, they needed to keep going and even though my grandparents didn’t want to. You know, they were done with their life and they wanted to end, but they sort of hung on and they needlessly suffered. And we oftentimes say that, you know, suicide, even assisted suicide is very selfish for the person that’s committing suicide but, to me, it just – it seems like it’s more selfish to make that person suffer.

FUDGE: Who is it? Was it T.S. Eliot who said, don’t go softly into that great night (sic)?

MOORE: Dylan Thomas.

FUDGE: I’m sorry, Dylan – Dylan Thomas. And I guess it seems – it sounds like that’s kind of what Anthony is talking about. Who would like to respond to what – to what he said? Charles von Gunten.

VON GUNTEN: So Anthony brings up a point, I think, that we see commonly, which is the person who has the illness has their own experience and needs, and people who are close, family—and that’s not just blood relatives—whoever’s close to them has their own needs and they sometimes are not the same. Our current model of medical care in the hospice – in the hospitals in San Diego and elsewhere in the country is to focus only on the patient and not the family’s needs. What is useful in the hospice approach is to focus on what the needs are of the children, the grandchildren. That need to fight is a cultural value we have in the U.S. that needs to be addressed. And what Anthony points out is it’s sad when that need to express a cultural value is played out in a push-pull over whether you get medicine X or treatment Y or go to the ICU or have another operation to show that you are a fighter. There are many other ways to show that you’re a fighter. And a good family member, acknowledging that the person who has the illness is dying and making sure that the quality of care is as good as it can be until that person dies.

FUDGE: Rebecca Moore, what would you like to say?

MOORE: Well, I think part of the issue that we’re dealing with is the medicalization of death, that death is an illness to be cured rather than a fact of life. And so we see the shift slowly occurring between curative medicine, which is that the disease and death are enemies, to palliative medicine, which is that, you know, death is a fact of life. But Anthony’s describing a very common situation where family members who may be the primary caregivers are ready to agree and accede to the wishes of those who are dying whereas the family members who are either estranged or living outside of town and so on want to keep people alive at any cost. And I recall my mother was in San Diego Hospice receiving care from us four years ago and the people at her retirement home could not understand why we didn’t whisk her off to the hospital for a feeding tube when she stopped eating. But that was her decision and that’s part of the dying process, that people stop eating. But we’re so divorced from the physiology of death and knowing what happens that people get frightened and I think one of the benefits of hospice is the educational factor where people learn, you know, this is a natural process and here are the steps that occur.

FUDGE: You know, Dr. von Gunten, I have to bring up one thing because I remember having a conversation with somebody else about hastening death and he said, well, there is a way to hasten death, you stop taking food and liquid. And, he said, this is an option that people have.

VON GUNTEN: It’s true. It’s open to anyone.

FUDGE: Open to anyone. And let’s go to Simon. I’m afraid Simon may have to be our last caller. Simon is in North Park. Go ahead.

SIMON (Caller, North Park): I just wanted to thank you guys for this conversation and I wanted to just leave with – leave you all with just a little comment that my father’s told me ever since I was little. And he said, basically, that death’s just the last lesson that our parents teach us. I think in the United States, we don’t ever talk about it, we don’t discuss it, and so we end up having these large problems. And if we just addressed this problem and talked about it as just another stage of life, you know, it would definitely ease the transition that we make and from, you know, life to death.

FUDGE: Thank you very much, Simon. And I – I – we may – I think he said it. I think we can just let that stand. But I did want to ask you, Dr. von Gunten, to respond to something that Rebecca Moore said when she said that death is viewed very often as a medical problem, a problem to be solved as opposed to part of life. And do you feel that the medical community does have that bias?

VON GUNTEN: I think Rebecca was referring to a cultural pattern over the last 40 years. The reason for the Institute for Palliative Medicine at San Diego Hospice is to bring this powerful knowledge that we now have and disseminate it to every doctor, every nurse, who is practicing in San Diego. There are skills, there is knowledge, new knowledge, that those who are now in practice do not know. So much of the suffering that we see here in San Diego, we get referrals from every hospital in the county, and once they are referred to us, we can see what would have been preventable if that knowledge was in every doctor, in every nurse in those hospitals.

FUDGE: Oh, your typical – your typical medical student, does your typical medical student learn about palliative care?

VON GUNTEN: So at the Institute for Palliative Medicine at San Diego Hospice, every medical student from UCSD must rotate with us. We have one of the nation’s best curricula. I can show that medical students, after rotating with us, have more knowledge in this area of death, dying and how to – more importantly, what to say and what to do for someone who has advanced disease. They – our medical students here have more knowledge than teaching physicians in teaching hospitals the rest of the country. Every resident in primary care in San Diego rotates with us. It’s the reason for us to use this name, the Institute for Palliative Medicine, because we’re trying to make this powerful new force in medicine broadly available. Suffering should not be inevitable. It is manageable.

FUDGE: Well, with that let me thank my guests. They have been Charles von Gunten, Jan Cetti, and Rebecca Moore. Dr. von Gunten is a medical doctor and Provost of the Institute for Palliative Medicine in San Diego. And, Charles, thank you very much.

VON GUNTEN: My pleasure.

FUDGE: Jan Cetti is CEO of San Diego Hospice. Thanks, Jan.

And thanks to Rebecca Moore. She’s professor and chair of Religious Studies at San Diego State. She teaches a course on death and dying. Her most recent book is “A Portable God: The Origin of Judaism and Christianity.” And, Rebecca, thank you.

MOORE: Thank you, Tom.