The Hospice Experience
Amos: This is an American RadioWorks documentary: The Hospice Experiment. I'm Deborah Amos. "Death is un-American", an "affront to the American Dream." Historian Arnold Toynbee wrote those words in 1969, a time of big change.
High school student: "...not to go to school tomorrow, next day or next year, until we have got our demands met."
Peace and civil rights, environmentalism and women's liberation.
Woman: "I'm a woman, and that's why I'm marching."
But a quieter revolution was underway too. One led by a few middle-aged women who wanted to change our way of death. They were the founders of the hospice movement. Their movement did not involve marches, and until now, their story has mostly gone untold. This hour, John Biewen explores the birth of the hospice movement.
Shenay: "I'm gonna tell you something. You know, you think about people on death row? That was my first thought. I'm on death row."
Girl: "Hi, Nanny."
Shenay: "Hi, Sweetie."
Girl: "You look so pretty."
Biewen: The family matron walks gingerly as she arrives for a gathering in her honor, on a mild January day. Her granddaughter's modest one-story house is on a cul-de-sac in Fayetteville, North Carolina.
Shenay: "Ooh, it smells good!"
Donna: "Hey, ma!"
Shenay: "Hi! How's my cook? ... I was born October the 23rd, 1925. I am Mary K. Shenay."
Biewen: Most people call her Kitty Shenay. She used to be plump and rosy-cheeked, the owner and operator of beauty shops in Myrtle Beach, South Carolina. Now she weighs just ninety pounds and her face has a yellow pallor. But her gaze is sharp and she's still in command when she wants to be.
Shenay: "We take the drippings, we put four cups of water and four packs."
Sita: "OK, how do I do the green beans?"
Donna: "Oh she's the center, totally."
Biewen: Donna LeFebvre of Chapel Hill is one of Kitty's daughters.
Donna: "She's very generous and giving. She's the kind of grandmother that was always on the floor playing with your kids."
Shenay: "Oh, here we are, we got our baby, now we'll make a picture!"
Donna: "So when she was diagnosed, it was pretty devastating for the family."
Shenay: "I have pancreatic cancer, advanced stages."
Biewen: By the time doctors found the tumor in Kitty's pancreas four months ago, it was too big and too late. That's where hospice starts: with a decision to stop fighting for a cure.
Shenay: "My doctor, David Goldstein, suggested that I go to hospice because it was nothing that could be done, and I am so glad he did, because I have seen where chemo has made people sicker than the ailment that they had, and they died anyway. My mother had radiation and it really burned her up. So I have had a productive life rather than be sick with my hair coming out and everything."
Biewen: In other words, even though cancer is killing Kitty, she's not dying today or spending her energy fighting for life. She's living, and little by little, letting go.
Shenay: "That's the hardest thing. When my kids were coming home, I'd always have the meals planned, what they wanted and all that. So at Christmas time, I had to turn everything over to them. Only two things, I made the dressing and the coleslaw. And I thought, oh my God, it's gonna be so hard on them, they won't be able to. But they did the greatest job. You would not have believed that table. So I knew right then I didn't need to be in the kitchen anymore."
Theresa: "Nobody can make your coleslaw, Mom."
Sita: "Or pound cake. Or dressing."
Shenay: "You will the next time."
Biewen: These days, about three in ten terminally ill patients get hospice care in the United States. Hospice has become commonplace, just a generation after it started as a fringe movement. Its founders are women of Kitty Shenay's generation. By far, the best known is Elisabeth Kübler-Ross. In 1969 the Swiss-born psychiatrist published the international bestseller On Death and Dying. In the '70s and '80s, she traveled the world lecturing on what she called the West's 'death-denying' culture, and her theory about the five stages of grief a dying person typically goes through. On Death and Dying is still read in some thirty languages, but Kübler-Ross has been out of the public eye for years.
Biewen: "We are at the Out of Africa Wildlife Park, outside of Phoenix."
Kübler-Ross: "Hello sweetie. Yes, you're pretty. I'd take you home anytime."
Biewen: Kübler-Ross is in her late 70s now. She uses a wheelchair after a series of strokes in the 1990s. She's small and hunched. She wears a baseball cap over her gray hair. Only occasionally is she recognized in public.
Laurie Steen: "I want to say hello and tell you how much I appreciate what you've done for all of us in your work."
Carter: "OK, hold onto me, alright."
Biewen: A young zoo worker, Peter Carter gives Kübler-Ross a ride in a golf cart.
Peter: "What is your name?"
Biewen: Told that his passenger helped pioneer the hospice movement Carter gets wide-eyed.
Carter: "I can't tell you what a wonderful thing that did, I mean. My grandmother had Alzheimer's. And you know it helped them? Independence and support, and, I mean you know, dignity, that was it. I'm gonna get all emotional now!"
Biewen: Kübler-Ross made a mark on Western culture that will clearly outlive her.
Laura Linney: "You know those stages of Kübler-Ross? The ones the dying go through?"
Kevin Spacey: "Um, Anger, denial, bargaining...." Linney: "Depression." Spacey: "Depression, acceptance."
Biewen: In the recent movie The Life of David Gale, Laura Linney's terminally-ill character talks with a friend played by Kevin Spacey.
Linney: "I'm not up to the job of Dying Person, marveling at blades of grass, lecturing strangers to relish every moment."
Biewen: That's the stereotype: that Kübler-Ross and the hospice movement offered incense and death with a smile. But it's never been that simple. Passing her days now in a Scottsdale group home, Kübler-Ross herself is anything but serene. She cusses and smokes, and though she can be warm and witty, she's often crotchety.
Kübler-Ross: "I was not lucky enough to die. Waiting to die is a boring process. Then I was angry at God. I gave him hell, too."
Biewen: "I'm sorry, who was that?"
Kübler-Ross: "God! I said 'You are not any better than Hitler himself.' And he laughed his head off."
Biewen: When Kübler-Ross talks to God, it seems God talks back. But whatever the popular perception, Kübler-Ross never said there was one right way to die. Here she is in a radio interview back in 1975.
Kübler-Ross: "The question is really, 'What does it mean to die with dignity?' To die with dignity, to me, means to die within your character. That means there are people who have used denial all their life long/ They will most likely die in a stage of denial. There are people who have been fighters and rebels all their life long, and by golly they want to die that way. And to those patients - we have to help them, to say it's OK!"
Biewen: To grasp why hospice emerged and why it matters, it helps to remember how medicine evolved in the United States and some other rich countries. Eric Cassell is a retired New York physician and Cornell University professor who's written widely on the care of dying and suffering people.
Cassell: "You know the famous picture of the physician sitting at the bedside of a sick child, the British picture, he's sitting there like that. He's watching the child die. Why is he, what do you need a doctor to do that for? Well, because nobody else could do that. They can't watch their child die. He can do that, make sure the child's kept covered and these things. Nobody does that now."
Biewen: With the rise of modern technological medicine in the last century, doctors no longer sat and watched. They worked furiously to keep people alive, with heroic surgeries and life support machines. Kübler-Ross critiqued that reflex in a 1984 PBS documentary.
Kübler-Ross: "We have perfected the most sophisticated machines to keep bodies functioning. We never ask the permission of the patient, is that really what they want? To me, that's a terrible dehumanization of the experience of dying."
Cassell: "I took care of the dying before there were hospices. And people died badly. We never gave enough pain medication. Never."
Biewen: Cassell remembers that in the 1950s, hospitals avoided the most effective painkillers like morphine for fear of addicting patients - nevermind the patient was going to die anyway. And 90 percent of doctors never told their cancer patients they had the disease.
Cassell: "And you say, well, that's lying! But we didn't do it because we were liars. We did it because we thought that if you told someone they had cancer, then that was the end because. They would say, 'Well, what are you going to do?' And we would have to say, 'we don't know what to do.' You know, we don't have anything to do."
Biewen: Starting in the late 1960s, Elisabeth Kübler-Ross was the leading spokesperson for the idea that dying people needed more dignity and better care. But the real founder of the hospice movement lives in London. She's a formidable, white-haired Englishwoman most Americans have never heard of.
Saunders: "I'm Cicely Saunders and my story in this field goes right back to 1948 when I was a social worker meeting a young Polish Jew who had an inoperable cancer… I became very fond of him."
Biewen: In fact, Saunders and her patient David Tasma fell in love. She was 29 then, an Oxford graduate and former nurse, and a devout Christian. She was moved by Tasma's deep anguish. Not just the pain from his tumor. He was also sad and alone.
Saunders: "I remember him saying, 'I'm just a rude sort of fellow.' He told me how he'd been brought up in the Warsaw ghetto, and his grandfather had been a rabbi, but in a way he left it all behind. But I think he just felt that he was just not an important person."
Biewen: In talking with Tasma, Saunders found her life's mission: to ease all kinds of pain at the end of life - pain not only physical, but also emotional, psychological, and spiritual. Her first step was to volunteer at something called St. Joseph's Hospice in London, not quite a hospice in the modern sense, but a small religious home for the dying.
Saunders: "They had no drug charts, no patients' notes, no ward reports. They had tender loving care by some Irish Roman Catholic nuns with Irish nursing auxiliaries. They were lovely."
Biewen: The patients at St. Joseph's were seen as beyond medical help. For that very reason, the nuns could ignore prevailing scruples about pain control.
Saunders: "There I saw the regular giving of oral morphine for the first time and realized that here was the answer to the control of constant pain, that I'd never seen in the hospital, because people were having pain first. They were earning their morphine by having pain. This was a very different scene."
Biewen: Saunders learned to administer morphine before pain gripped the patient, not after - to stay ahead of the pain rather than chasing it. She wanted to take such practices beyond the religious home to more dying patients in a medical setting. But first, she says, she got some advice from a surgeon friend. He told her that before setting out, in effect to launch a new branch of medicine, she'd better become a doctor first.
Saunders: "'It's the doctors who desert the dying. And there's so much more to be learnt about pain. And you'll only be frustrated if you don't do it properly, and they won't listen to you.' So with my father's money, bless him, and his encouragement, I became a medical student at the age of 33."
Biewen: When she got her medical degree in 1957 Saunders became the first modern doctor to devote her career to dying patients. It would take her another ten years to open the world's first modern hospice.
Amos: Coming up in a minute, Kitty Shenay's experience as a hospice patient. And in 1966, Elisabeth Kübler-Ross starts interviewing dying patients in Chicago, angering her fellow doctors.
Imara: "And started screaming at her. Saying things like, 'What kind of a ghoul are you?' and you know, this and that."
Amos: I'm Deborah Amos. You're listening to The Hospice Experiment from American RadioWorks, the national documentary unit of Minnesota Public Radio. Our program continues in just a moment, from NPR, National Public Radio.
Amos: This is The Hospice Experiment from American RadioWorks. I'm Deborah Amos. In 1966, psychiatrist Elisabeth Kübler-Ross started interviewing dying hospital patients in Chicago, asking them what they wanted and needed. The experience would change Kübler-Ross's career and her life. What she didn't know, in London, Cicely Saunders was building the world's first modern hospice. And a group in Connecticut was beginning to plan for America's first hospice program. John Biewen picks up our story on the hospice movement.
Biewen: When she was diagnosed with pancreatic cancer in the fall of 2003, Kitty Shenay's doctor estimated she'd die within six months.
Shenay: "Hi, Roland."
Siverson: "Hey, good morning. How are y'all?"
Biewen: Kitty became a patient of UNC Hospice, a branch of the University of North Carolina health system. Her hospice nurse, Roland Siverson, visits about once a week at the townhouse in Durham where Kitty lives with her husband.
Shenay: "I really feel good."
Siverson: "You look great."
Shenay: "Thank you."
Siverson: "You're sleeping well?"
Biewen: Four months after her diagnosis, Kitty has done better than expected. She took a cruise and a Christmas vacation at the beach with her family. She and her husband are still managing their lives, with regular visits from Kitty's daughters. But her digestive system is faltering. She takes medicines for pain and other symptoms.
Siverson: "Well, you're taking the Reglan."
Siverson: "That's for nausea."
Shenay: "But it gives you such a dry mouth and you don't, can't breathe very well, you know. I took a Darvocet to go to sleep with."
Biewen: Siverson stays for a full hour. He takes Kitty's vital signs.
Siverson: "116 over 62."
Biewen: And the two chat like friends. The conversation ranges to Kitty's family history and her children and to Maurice's health. Kitty's husband is 90, a native of Germany who came to the U.S. before the Second World War. Maurice has a batch of illnesses, too. He's so sick he may soon become a hospice patient himself.
Siverson: "Are you feeling relatively stable?"
Maurice: "Well, yeah, I feel pretty good. Just very tired, have no energy."
Shenay: "He sleeps all the time."
Maurice: "I don't know whether that's the lung cancer or the asthma, the emphysema. But I have absolutely no energy, no go-up-and-go."
Biewen: Hospice tries to ease the sometimes dreadful realities of terminal illness, but it can't erase them. In talking with Kitty and her family, Siverson mixes optimism with gentle frankness.
Siverson: "But your appetite is still strong?
Shenay: "I go to bed at night dreaming about food. But you can't eat. You know, you can only eat just ..."
Siverson: "A little bit at a time."
Shenay: "Well, you know, what you people take for granted and I took for granted, like a piece of bacon. And you realize you're never gonna have a piece of bacon again."
Siverson: "It's too much of an insult to the system."
Shenay: "But it just blows your mind."
Siverson: "Right, fried foods can be disruptive."
Shenay: "You can't do it. So. Whatever. For another - one more day at a time."
Siverson: "It is, sort of, you've been doing so well for a good long period of time now but there will be, invariably, some changes."
Shenay: "I know, I know. You don't have to tell me. It's not uphill, it's downhill."
Teresa: "You know, I think really, we weren't really sure we were so ready for mom to go in hospice."
Biewen: Kitty's oldest daughter, Teresa Harrison, visits often from her home three hours away in Spartanburg, South Carolina. She says she wanted her mother to fight the cancer somehow, to at least try a special diet she'd read about online. And Teresa wonders if Kitty shouldn't have waited until death was closer before starting hospice care.
Teresa: "I think I felt that them coming in early was like a constant, it's a reminder every time they walk in the door that they're illness - that they're dying. That they're dying, you know."
Shenay: "I don't think I've ever felt like that."
Biewen: But Kitty had her own doubts when her doctor first brought up hospice.
Shenay: "My reaction wasn't favorable because I didn't know that much about hospice. It was more like a group session, that's what I sort of, in my mind, I thought of it."
Biewen: "Your image of it was that it was sort of a touchy-feely thing to try to make you feel better and that was it."
Shenay: "Yes. Sit with you through your pain."
Biewen: For her, she says hospice has turned out to be, above all, practical medical help. Like Kitty, most hospice patients are cared for at home.
Shenay: "You have someone here once a week to take all your vital signs, and I remember going with family with cancer and we had to go out once a week to a doctor and sometimes that person would be hardly able to get in a car. So this is just wonderful. This way, I don't have to ask someone to drop by the drug store for me. They deliver it for me."
Biewen: In its 30-year history in the United States, hospice has evolved some, especially with advances in pain medication. But its core principles are constant: generous control of symptoms, attention to the patient's psychological and spiritual needs, care and support for the family as well as the patient. These ideas come straight from the English nurse-turned-doctor, Cicely Saunders. Starting in the late 1950s she wrote articles in medical journals and talked to whoever would listen on both sides of the Atlantic.
Saunders: "Well, it was just very exciting to meet people who were interested and that you weren't just some crazy person who was looking at some vague dream. But there were people saying 'there is a need, and we know it and we're interested and we'll join!'"
Biewen: One of the first Americans to respond was a Connecticut nurse named Florence Wald.
Wald: "Have you talked with Cicely recently?"
Biewen: She used to be five-foot-two but now in her mid-eighties she's down to an even five feet. Florence Wald walks the gleaming halls of the Yale New Haven Hospital with Bernard Lytton, a urologist and professor emeritus. Lytton leads us into one of those circular, plunging medical school lecture halls.
Lytton: "We're standing in the Fitkin Amphitheater. In 1963, I think, Cicely came here and gave her first talk on hospice care."
Wald: "In 1963 we were struggling with patients, particularly the cancer patients, who were being treated with surgery and with radiation in the hospital. And despite the fact their condition was worsening, the curative treatment was pursued."
Biewen: At the time, Wald was Dean of Nursing at Yale. She listened, enthralled as Saunders described her experimental work using drug cocktails and tender attention to keep dying cancer patients alert and comfortable.
Wald: "To us she was a nurse, and that was the epitome of nursing. So it was a very, very moving experience for me."
Biewen: Wald was so inspired that within a couple of years, she resigned her deanship at Yale. She started working with a small group in New Haven toward founding the first hospice program in the United States. It's no accident that the hospice movement came along when it did, says author Eric Cassell.
Cassell: "The private life became public in the 1960s. That's extremely important to understand that because that made a lot of this all possible."
Biewen: Until the 60s, death was sort of like sex, not a topic for polite discussion. But social turmoil was shaking the culture loose. The book, Everything You've Always Wanted to Know about Sex (But Were Afraid to Ask) was published in 1969, the same year as Elisabeth Kübler-Ross's On Death and Dying.
Cassell: "Suffering used to be silent - nobody talked about death, even. I once gave a lecture on the care of the dying in 1972 and somebody stood up before I got up from the audience and said, 'This is outrageous. You have no right to talk about this. These are private matters.' See? And now it's not a private matter at all, is it?"
Wald: "So it was a time of protest. It was a time of protest against the Vietnam War, but it was also the civil rights movement. Then there began to be talk about patients' rights."
Biewen: Florence Wald was the daughter of New York intellectuals and a supporter of the civil rights movement. She came to see better care for dying patients as a matter of human rights. For her part, Kübler-Ross seems to have been wired for rebellion. Elisabeth Kübler grew up in an upper-middle-class family in Zurich.
Kübler-Ross: "My father absolutely was convinced that I had to work in his office and become his secretary, his top-notch secretary, number one. Ugh. I'd be anything else, but not his secretary. And that gave me the energy to do what I needed to do and what I loved to do."
Biewen: Elisabeth wanted to be a doctor. She found jobs in laboratories. At the end of World War II, she volunteered to go to Poland and work with sick and starving people. She saw the Nazis' death camp at Maidanek, an experience she later wrote about and described to friends.
Imara: "She was highly impacted by seeing the evidences of the deaths of thousands upon thousands and thousands of children, and started, I think her interest in death and dying started right there."
Biewen: Mwalimu Imara is a retired Episcopal priest and a friend to Kübler-Ross since 1966. By then, Kübler-Ross had married an American and taken a job as a psychiatrist at the University of Chicago. Imara was a divinity student and a chaplain at Chicago's Billings Hospital. He got assigned to work with Kübler-Ross on a controversial seminar in which she interviewed dying patients.
Kübler-Ross: "The most frustrating thing for you right now is that you can't speak well."
Biewen: The PBS program, Nova, filmed Kübler-Ross sitting with terminally ill people and their families. This woman was paralyzed by disease and could barely talk, so her daughter joined the conversation.
Daughter: "The one thing mother wanted to ask you, and the thing that bothers her, is that she feels that since she's unable to use her body, what purpose is she serving? And she feels like for anybody to live they should have some purpose in life. And she can't see what her purpose is now."
Kübler-Ross: "Do you think it's more important to run around the house using the broom and cleaning windows, or is there also a purpose in learning how to receive?"
Woman: "uh, uh...."
Daughter: "You got her there."
Kübler-Ross: "And letting your children mother you a little bit after you have mothered them for so many years? Don't you think that teaches them something?"
Biewen: In their Chicago seminars in the 1960s, Kübler-Ross and Imara interviewed terminally ill patients before a classroom of medical and divinity students.
Kübler-Ross: "The seminars were very popular. The university hated me. Oh, they had so many hang-ups."
Imara: "What they were concerned about was that if the patients heard the word 'death' or talked about death, it somehow would destroy their peace of mind."
Biewen: Their peace of mind and any sense of hope. Imara recalls one furious doctor who confronted Kübler-Ross in the crowded lobby of the hospital.
Imara: "And started screaming at her. Saying things like, 'What kind of a ghoul are you? You know, this and that. Seeing patients, you're irresponsible, seeing patients without permission!' and so on. She simply stood there and said 'I never see a patient without permission.' And he took a step towards her and I took a step towards him. I'm six foot, I've been six foot ever since I was seven and I was in a heck of lot better shape than I am now. I remember feeling her grab my coat. You know, grab my coat on the side and give it a firm yank, like this, you know, and I knew she was there, she was not in the least bit threatened by this guy."
Biewen: Those interviews with dying patients were the basis for Kübler-Ross's book, On Death and Dying. Its publication made a sensation in 1969 but the University of Chicago said Kübler-Ross's work wasn't real medical research.
Kübler-Ross: "I said, 5,000 pages are not enough, huh? That's not enough research? No, it's not science. I said, tough shit, that's your problem not mine."
Biewen: Chicago declined to offer Kübler-Ross tenure and she and the university parted ways.
Wald: "But by that time she had become so well known ..."
Biewen: Florence Wald.
Wald: "... that primarily nurses were the ones who asked her to speak, and she was soon going all over. So essentially what she did was to have an independent university of her own."
Kübler-Ross: "And they will share with you what it is specifically that you can do for them so they can die with peace and without fear. ... When I started this work, I was very much hated for sitting with dying patients and making the hospital famous for dying patients. And a decade later, I received so many doctorate degrees, I can't even count them. And I don't understand that because I've never invented anything. I've never done anything except sit with people and listen to them, and hear them."
Biewen: When people heard or read Kübler-Ross and wanted to take action, they had a model. In 1967, Cicely Saunders had opened the world's first modern hospice in a leafy part of South London. She named it St. Christopher's after the patron saint of travelers.
Monroe: "One of the important things to say about St. Christopher's is that what you're seeing here is just the building. And I say that really quite with some emphasis because hospices are not buildings, they're philosophies."
Biewen: Barbara Monroe is Executive Director of St. Christopher's Hospice. It's now a $15-million-a-year institution the size of a small hospital, with 48 beds, gardens and aromatherapy and a library. But most of its 500-plus patients get care in their homes. Cicely Saunders still comes to her office at St. Christopher's, even though she's in her mid-80s and there's already a big bronze bust of her in the lobby. The bust she blames on a donor.
Saunders: "He gave us a very good donation here but rather on condition that I had my head done by this chap and that it was put in reception. And I said well it can't go in reception 'til I'm dead, but I was overruled."
Biewen: St. Christopher's still helps to lead research on things like pain medication and how to ease the grieving process. It's also a worldwide training center for those who care for the dying.
Monroe: "One of the things that we're very committed to in our education programs is supporting the developing world. And we've had people here from Africa, Latvia, Russia, India, Swaziland, Vietnam."
Biewen: From its beginnings, St. Christopher's set an example for North America, too. Florence Wald worked here before founding Connecticut Hospice in 1974. So did Dr. Balfour Mount, a cancer surgeon from Montreal who became another key figure in the hospice movement. He came across Saunders's name in 1973 while reading On Death and Dying by Kübler-Ross. He picked up the phone and called Saunders in London.
Mount: "She came on the line and I explained who I was, and told her that I was interested in coming to see what they were doing. And she said, 'I know you. You want to come to London with your wife, see a few plays, then come over to St. Christopher's, have a quick walk around and have a look and then go home. Well, I won't have it. You be prepared to come over, roll your sleeves up and get to work for a full week, and I'll have you.' And she was absolutely right. I was planning to bring my wife with me and see a few plays."
Biewen: Mount made the trip without his wife.
Mount: "I was deeply impressed. That's where I wanted to die, first of all."
Biewen: Two years later in 1975, Mount founded the world's first hospital-based hospice. He called it a 'palliative care' unit, at the Royal Victoria Hospital in Montreal. Starting in the mid-70s, hospice programs sprouted by the dozens, then the hundreds. In 1982, Congress passed a landmark law requiring Medicare to pay for hospice placing it in the mainstream of American medicine. Today, more than 3,000 hospice programs serve about 900,000 patients a year in the United States.
Mount: "And there are now, what is it, 8,000 programs in over 100 countries around the world that have grown from the experience of St. Christopher's Hospice, London, period, and the work of Cicely Saunders."
Amos: I'm Deborah Amos. Still to come, a focus on meaning at the end of life. And Kitty Shenay faces her last days.
Shenay: "I don't want the time to come that I don't have any control over myself."
Shenay: "That's when I want to go."
Siverson: "Right. You're pretty tough."
Shenay: "I hope so. I hope so when we get there."
Amos: To see photographs of Kitty Shenay and links to more information on hospice visit AmericanRadioWorks.org. There's also a place to share your hospice story. That's at AmericanRadioWorks.org. Major funding for American RadioWorks comes from the Corporation for Public Broadcasting. and members of Minnesota Public Radio. Funding for The Hospice Experiment provided by the J.L. Foundation.
You're listening to The Hospice Experiment from American RadioWorks, the national documentary unit of Minnesota Public Radio. I'm Deborah Amos. Our program continues in just a moment, from NPR, National Public Radio.
Amos: This is The Hospice Experiment from American RadioWorks. I'm Deborah Amos. In setting out to treat terminally ill patients, the founders of the hospice movement wanted to care for the whole person - body, mind, and spirit. Hospice workers encourage dying people together with their families to look back on the patient's life and find meaning in it. The approach was apparent in the last weeks of Kitty Shenay's life as a hospice patient in North Carolina. John Biewen has the final segment of The Hospice Experiment.
Biewen: Cicely Saunders and Florence Wald are both in their 80s. More than 40 years after they met at Yale, the two remain close friends.
Wald: "I like this blue, it's so nice on you."
Saunders: "Got it in a sale, 75 percent off."
Biewen: Wald is visiting Saunders at St. Christopher's Hospice in London. Two smartly-dressed, white-haired women in glasses and sensible shoes. Wald inspects the new bronze likeness of Saunders in the lobby, then gives its flesh-and-blood subject a blunt critique.
Wald: "I thought it looked too severe."
Saunders: "Well, it's got a hint of a smile. I wouldn't want to cross her, I must say."
Biewen: Both women are still active. Saunders at St. Christopher's, Wald promoting hospice care in prisons. But they talk easily about being near the end of their own lives.
Wald: "But of course I always know that there are always going to be things that I haven't finished yet before I die."
Saunders: "Yes, I'd love to tidy my desk."
Wald: "Yes, me too. We won't."
Biewen: The three hospice pioneers whose stories we've told here - Saunders, Wald, and Elisabeth Kübler-Ross - all say they have no fear of dying, having seen much of it. The three have widely differing spiritual views - Saunders the devout Christian, Wald an agnostic Jew, and Kübler-Ross a believer in New Age spirit guides. Nonetheless, they all agreed from the start. Psychological and spiritual questions are so important at the end of life that they should be part of hospice care. Cicely Saunders.
Saunders: "One of the people who's had an enormous impression on me, and through me on the hospice movement as a whole, is Victor Frankl, the Jew who wrote Man's Search for Meaning when he came out of the concentration camps. And one of the things he firmly says, we cannot give to somebody else a sense of meaning for their lives. All we can do is to help them find it for themselves."
Biewen: Saunders is quick to add that some hospice patients die without tying up their lives neatly, leaving behind regrets and tattered relationships. Still, Wald uses a striking phrase - one that sounds at first like a contradiction.
Wald: "What I have found is that people can die in good health ..."
Biewen: That is with a sense of fulfillment.
Wald: "... and feel the satisfaction of 'I have a good life.' Sometimes people don't have time or opportunity to go through that kind of thing. But it is possible to do and that's one of the very exciting challenges that you have as a caregiver."
Shenay: "It's the 10th, I mean the 16th, and we have lots of snow. It looks like a wonderland out there with all the snow this morning."
Biewen: It's mid-February, more than five months after doctors found a large tumor in Kitty Shenay's pancreas. The cancer has attacked her liver now too. Day by day, her body shows mounting signs of failure.
Shenay: "Well, I got up this morning, I thank God for the night. But I wasn't feeling very good, real swollen foot, have been down since Sunday in the bed. Just not having the good days I have been having. Stomach hurts very bad."
Biewen: The circle around Kitty has closed. She rarely leaves the apartment she shares with her sick husband Maurice. Besides her hospice nurse, her only visitors are close family.
Teresa: "What year was that, Mom?"
Shenay: "That was the 60s."
Biewen: Kitty and her oldest daughter Teresa Harrison look at photos from Kitty's years in the hair-salon business in South Carolina.
Teresa: "Isn't that a bouffant, is that what you call that?"
Shenay: "You have to, I had to follow the styles. Whatever was in, you had to go with it on."
Teresa: "My mother was very foxy. You should see these pictures. Oh my God, you're 'My dream of Jeanie' or something!"
Biewen: Kitty says she's loved her life, but it was hard. Growing up near Fort Bragg in Fayetteville, North Carolina she married a soldier at age 15 to escape her alcoholic mother, she says. Some of her biggest dreams were out of reach.
Shenay: "I always wanted to be a dancer. Or a secretary. That was the two things I really wanted back in those days. We didn't have much choice."
Biewen: Kitty moved a lot with her husband, an Army officer. After raising four children, they divorced and Kitty later married her current husband Maurice Shenay. Her biggest blows were the loss of two adult children, a son in a plane crash and a daughter to disease. Teresa says her mother's stoical response to terminal illness is typical of her.
Teresa: "Mom won't let us know, that she can't handle something. Don't you think that's right, Mom? People have to understand that she's on top of it, no matter what she's going through. Otherwise it's a weakness."
Shenay: "No, because I always had to be strong. ... Well, I rise this morning at six and I pray to God, 'Please let me live through the day and thank you for last night.' I know it's selfish, but I just want to live on."
Biewen: Kitty gets another piece of hard news. Her sister, who lives in Virginia, is near death. Kitty's hospice nurse, Roland makes his weekly visit as Kitty plans to see her sister one last time.
Siverson: "Are you nervous about this trip at all?"
Siverson: "You must be sad, though, to think of."
Shenay: "Yes, but, you know, it's better to see her alive than dead."
Biewen: Roland Siverson is a youthful 52. He has kind eyes and a teenager's head of brown hair. Since the subject of death has come up, he turns the talk to Kitty's future.
Siverson: "You haven't seemed very scared of, of dying."
Shenay: "I don't want to die, Roland. And I pray so hard every morning. But you know, I don't have any choice."
Biewen: "I've noticed that in some of your interactions with Kitty, you're sort of reminding her that things are coming."
Siverson: "As gently as possible."
Biewen: "What's the importance of that?"
Siverson: "I think it's helpful for families and patients to not be continually reminded of their dying, but to not lose sight of those things that are of value in the here and now. Each day is such a unique opportunity for folks to engage with each other in such a real and unalloyed way."
Shenay: "You know a lot of times you go through life, you get to this point and you think, well, why didn't I do so and so different? But it's the letters I've received that have just put me so right with a lot of things through life. The charity work I did. All the people that I got into business, that started to work for me. And just the other day I had one from a friend telling me about dying and what I had left behind."
Siverson: "Sometimes we never know what we left behind."
Shenay: "It was good."
Siverson: "It's a blessing."
Shenay, whispering: "Yeah."
Siverson: "I've been a hospice nurse for s years. It's such an intimate process that we become almost a part of the family sometimes."
Biewen: Before switching to hospice, Roland worked as a nurse in a V.A. hospital. He says it was sad to watch old men die in hospital beds, sometimes alone, with nurses too busy to do much more than give medicines.
Siverson: "A hospital is not a great place to die."
Biewen: As a hospice nurse, Roland visits his patients in their homes, typically sitting for an hour or more and acting as friend, counselor, even minister.
Siverson: "It's a privilege for us. Engaging in that kind of delicate, beautiful relationships, conversations just sort of layering back who we are as individuals and how we meet the challenges that face us."
Shenay: "I don't want the time to come that I don't have any control over myself."
Shenay: "That's when I want to go."
Siverson: "Right. You're pretty tough."
Shenay: "I hope so. I hope so when we get there."
Siverson: "You're quite a woman."
Shenay: "Thank you, Roland. Thank you so much, you've been so good to me."
Biewen: As February winds down, Kitty weakens. The cancer starts to shut her body down. She sleeps more and more and manages to eat less and less. Her husband Maurice sees what's coming.
Maurice: "I love Kitty so much and I still have not really accepted the fact that very shortly I may be alone.
Biewen: Maurice's lung cancer is now considered terminal and he's getting hospice care, too. The second week in March, Kitty's disease overwhelms her. Her daughter Teresa comes to stay with her and Maurice to take care of them with help from hospice.
Teresa: "You having a hard time breathing, Mom? Mom, are you having a hard time breathing?"
Biewen: Kitty's in bed, her eyes closed, her mouth open, an oxygen tube beneath her nose to ease her breathing. She's too weak to talk - even to swallow. Sometimes when someone speaks to her, she seems to try mightily to rise to the surfac, forcing her eyes half open. Stepping outside the room, Roland tries to prepare Teresa for what may be the last day of her mother's life.
Siverson: "But she's comfortable and she can sleep. You know she's just really withdrawn, personality dissolves, so that the basic core human functions of breathing and heartbeat are really the main thing now, her feet are cooling."
Teresa: "Right, I've noticed that, and her hands. Do people usually fight to the very end?"
Siverson: "No, oftentimes folks just sort of slip away."
Siverson: "She may open her eyes and look around. It might be sort of a pronounced awakening for a few moments before she closes her eyes and slips away. That would not be uncommon."
Biewen: After a couple of hours, Roland gets ready to leave. He sits on the edge of Kitty's bed, holds her hand, and moves close.
Siverson: "I'll see you tomorrow. God bless you, girl. You've done beautifully. Get some rest, now. When it's time."
Biewen: When it's time, Roland tells her, just cross over. That evening about six hours later, Kitty suddenly gets animated, sits up and tries to rise. Teresa calms her with a dose of drugs, then speaks to her.
Teresa: "I just told her that everybody who's died that she loves was waiting for her, and that everybody loves her. I told her that God was waiting, that she was a mighty warrior. That he was waiting for her. And I believe that. Mom is a true warrior."
Biewen: With Kitty calm again, Teresa leaves the room for about ten minutes. When she goes back in, Kitty is gone. Just a couple of hours later, Teresa sits in her mother's living room with Roland.
Teresa: "I am very, very thankful. I have to look at it that way. I think God brought me here, he brought everybody together, and he let my Mom die without suffering. I know that the breathing was bad, but that was just this week, really, that it was to that degree, and she wasn't in horrible agony from cancer pain."
Siverson: "She was blessed."
Teresa: "She was blessed. I think I almost told her that, 'You are a blessed woman.'"
Biewen: At Kitty Shenay's request, her family does not hold a traditional funeral for her. Instead, a couple dozen of her children, grandchildren, and great-grand children have a party in her apartment. They've decorated the place with pink and white crepe paper and balloons.
Teresa: "Each person's gonna get a rose and put it in this vase over here and if they want to say something about Mom, they can. And we have her picture hanging over the table."
Christian: "Nannie was really nice and she was sweet to us."
Biewen: I'm John Biewen.
Laughlin: "Nannie really, you know, took spoiling her grandkids to an art form."
Sita: "I'll remember Nannie taking care of all my friends and making me very popular."
Andrew: "Always good to watch a basketball game with and she knew what was going on."
Teresa: "She was the center of our family and our lives."
Amos: I'm Deborah Amos. After Kitty Shenay's death, her husband Maurice was placed in a nursing home. Then suddenly, following his wife by just six days, he died. Hospice isn't for everyone. Some people will always die in hospitals fighting disease or injury to the end, and rightly so. But only about three in 10 Americans get hospice care at the end of life and many who do enter hospice just days before they die. Experts on care at the end of life say lots of dying people suffer through aggressive treatments when hospice would be their best option. They argue, more people could live better in their last days if doctors, patients and families would more fully accept the only thing we know for sure - that everybody dies.
The Hospice Experiment was produced by John Biewen. It was edited by Deborah George. Coordinating producer Sasha Aslanian, project coordinator, Misha Quill. Mixing by Craig Thorson. Production assistance from Will Atwater, Ellen Guettler, Tennessee Watson, Patrick McGrath and Sarah Fazio. Web production by Ochen Kaylan. The managing editor is Stephen Smith. The executive producer is Bill Buzenberg. Special thanks to the Madison-Deane Initiative and Terrence Youk of Brooke Hollow Productions. I'm Deborah Amos.
To see slide shows of Elisabeth Kübler-Ross and Kitty Shenay, visit AmericanRadioWorks.org. You can sign up for an email newsletter about upcoming programs and find an archive of past documentaries. That's at AmericanRadioWorks.org.
Major funding for American RadioWorks comes from the Corporation for Public Broadcasting and the members of Minnesota Public Radio. Funding for The Hospice Experiment from the J.L. Foundation. American RadioWorks is the national documentary unit of Minnesota Public Radio. This is NPR, National Public Radio.
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