Narrator: Coming up on Aging Matters: End of Life.
I think we're dealing with deep–rooted natural fear of dying. No one wants to die.
He didn't want it, and it didn't help them, but I thought it was, so was I doing it for him or was I doing it for me? I don't know.
We are in danger of consuming a lot of resources for care that isn't efficient or provides the kind of care that people really want.
I've had a good life. I've enjoyed life, and that's the way to go – just let nature take its course.
We are going to have a large number of people who need hands–on care every day. We are going to have to figure out how to function with that.
Announcer: Major funding for NPT reports is provided by Cigna HealthSpring, lead sponsor of NPT reports at Aging Matters; the West End Home Foundation, support in the care of seniors through many organizations in Middle Tennessee; the Jeannette Travis Foundation, dedicated to improving the health and well–being of the Middle Tennessee community; the Corporation for Public Broadcasting; and by members of NPT. Thank you.
Kathy Mattea: In a few short years, the number of Tennesseans aged 65 and older is expected to increase by a third, and that's just the beginning is the Baby Boom generation gets older. This growing population will affect all of us no matter our age. Hi, I'm Kathy Mattea. In response to this new reality, Nashville Public Television has undertaken a project to address the issues of aging in Middle Tennessee. Over the next few years, NPT will look at the strengths of our community as well as the challenges facing older citizens, their families, caregivers, and the institutions that serve their needs. I'm privileged to be a part of this thorough effort to bring our community together and learn more about the issues and challenges facing all of us as we age.
This first documentary takes an in–depth look at how we deal with the end of our lives. It is a difficult subject but one each of us will inevitably have to address. I think most of us imagine our own deaths to be quick, peaceful, and surrounded by loved ones when asked where they preferred to die, Americans overwhelmingly say at home, but most deaths actually happen in hospitals or other long–term care facilities. Often, many of us get aggressive medical treatment that does little to improve our last days, weeks, or months. Why don't we get the death we say we want? How can we move more people towards living with the best possible quality of life until their last moments? Join me as we explore the answers to these questions on Aging Matters: End of Life.
Narrator: Jaci and Ellisa Henley's father was diagnosed with prostate cancer when they were in college. For 18 years, they watched him fight the cancer but in 2010 he suffered an acute crisis possibly from kidney failure.
Ellisa Henley: When he first entered into the hospital, it didn't seem like this was going to be the end. We had gone through bouts before, so it didn't seem any different than the other times. I don't know that he had renal failure, though.
Jaci Henley: We didn't realize how serious the situation was, and I don't think anybody ever told us it was a serious situation.
Narrator: As their father's condition worsened, the Henley family struggled to understand what was happening.
Jaci: We couldn't get doctors to come and explain to us what was happening to begin with, you know, to let us know is it the renal failure? Is it the cancer? What is causing the pain? What is happening? He didn't want to be, and we are like
Well, daddy, we need to talk to a doctor first. Let's find out what's happening because we can't take you home. You might not make it. We don't know what's happening, so let's talk to a doctor first. And he's like,
No, I want to go home. I don't to be here anymore.
Narrator: After a week in the hospital, Jaci and Ellisa's father suffered a heart attack and died, despite a long–term chronic illness and plenty of time to prepare this was not the good debt he wanted in the family hoped for.
Ellisa: I think if they had just said, you know, he's not going to make it out of this, then we could have made some kind of arrangement to have him sent home, but that just never happen.
Joanne Lynn, MD, MA, MS: Most of the time, people are living in fragile health for a long time and some little thing is going to be enough to mean it's the end, but whether that comes on Tuesday or Thursday or in 2 weeks is not so clear.
Narrator: The frustration felt by the Henleys over their father's death is also shared by some in the medical profession.
Robert Goldmann, MD: The elephant in the room is that it is rare for the most part in the hospital for the staff to be surprised when somebody dies. The hospital staff normally knows that it is coming.
Narrator: Bob Goldmann witnessed a lot of patients dying while working as a doctor in an intensive care unit.
Bob: The fact that I really fit into that world surprised me a little bit, but what kind of got a little bit in the way was a tendency to want to talk to patients and families. That was the part of critical care I really enjoyed.
Narrator: After 25 years of working in the intensive care unit, Goldmann's enthusiasm for his work began to fade.
Bob: The biggest thing that get the most frustration with is having to make life and death decisions on the fly in an emergency room surrounded by people who don't know us dealing with a crisis of literally minutes or sometimes less and trying to make a decision that actually respects and validates the patient's belief system. The number of conversations that I knew needed to have happened before that person ever saw and ICU kept multiplying.
Narrator: By 2001, Goldmann started dreading going to work, eventually becoming emotionally and physically drained.
Bob: I had to walk away from the ICU when my #1 diagnosis became mortise interruptus – all I was doing was forestalling people's deaths. We have the capacity to make you die a long time, and I say that deliberately. Our technologies and our availabilities to prolong vital signs, to prolong existence have gotten far ahead of our ability to really sit down and say, is this what somebody really wants to be doing?
Narrator: In fact, a 2004 study found 1 in 5 Americans died using intensive care services; however, more recent studies indicate that fewer people are dying in the ICU, but intensive care use has actually increased among patients in their last month of life. This increasing use of aggressive medical care at the end of life also doesn't match what patients say they want; 80% of patients with chronic illnesses reported wanting to avoid hospitalization and to the intensive care unit when they are in the terminal phase of their disease. Despite what many Americans say, they still have a good chance of dying in a hospital.
Bob: I think we are dying in hospitals because a lot of times we enter the hospital dying but nobody really admits it. It's a standard joke that regardless of medical intervention, the death rate remains stable at 100%. We are all going to do this. The question is are we doing it in a way that really is what we are looking for, and if not why not?
Narrator: Dying in hospitals and ICUs is a relatively new phenomenon. A century ago, Americans had a very different relationship with death and medicine. People died of things that are now easily treatable, such as pneumonia, diarrhea, and injuries.
Emily Abel, PhD: The culture of death was very different in the 19th century. For one thing there was a sense that death was omnipresent, that life was fragile. Medicine played a relatively small part in the dying process. Doctors were relatively few and far between. Many people didn't have the money to pay for doctors. There were very few hospitals, and in fact hospitals didn't want dying people because they wanted to keep their mortality rates low.
Narrator: At the turn of the 20th century, discoveries in biology and new diagnostic technologies profoundly changed the understanding of medicine. Hospitals transformed from religious and welfare institutions into scientific enterprises.
Emily: The doctors, for the first time, felt that they really understood diseases and that they could cure diseases. Doctors also really wanted to attend to patients whose diseases could rather quickly and successfully be resolved, which meant people of course who could be cured rather than people who had a long, lengthy disease. Obviously doctors did sometimes take care of people who were dying, but the focus of medicine and doctors was on curing disease.
Narrator: A hospital building boom after one or two and the spread of health insurance brought more and sicker people into hospitals and newly–established intensive care units and started changing where people died.
Emily: It wasn't until 1945 that 50% of all deaths occurred in hospitals. This was partly because hospitals expanded in size and number and also there were rising expectations of what medicine could accomplish. I would say the Second World War really inaugurated a period of medical triumph in this country, and that encouraged many people to enter hospitals.
Narrator: Until the mid–1900s, most Americans died at home. But today a minority die there. Between 2005 and 2010, 43% of Americans died in a hospital; 21% died in nursing homes or long–term care facilities and only 25% died at home.
Emily: American medicine has really accomplished wonderful things; however, I think its focus just on cure has had a distorting impact. There is very little premium placed on preparing for death. In the 19th century, people were definitely supposed to prepare for death. In fact, they were supposed to be always prepared for death. But there is very little in our culture that supports any kind of preparation for death, whether it is emotional, social, saying goodbye to people, financial, or spiritual.
Debbie Garson: My husband, Peter Garson, he told jokes all the time. He was the life of the party. He was philanthropic. We went to charity events. We played tennis. We took at least one or two ski trips every year. We had a big, beautiful life. It was a great life. Until it wasn't. October 1, 2007, I took him to the doctor. On October 3, 2007, he had a biopsy and we determined that he had a glioblastoma brain tumor. Nobody ever really said this is terminal. The doctor didn't give me a sense of that because I didn't ask. I didn't want to know. I wanted hope. I wanted Peter to live.
Narrator: Even though her husband's prognosis was not good, Debbie Garson chose aggressive treatments.
Debbie: He would be sleeping in the morning, and it was 7:30 and we had a 9:00 appointment for him to have his chemotherapy or blood drawn or whatever it might be. That was torture for him, having to get him up, get him showered, and get him dressed. He wanted to sleep. I should have let him sleep. Trying to give him his chemotherapy pills was impossible. He would throw them back, and then I would have to go look on the carpet to see where he threw it and pick it up and try to get it to him again. He didn't want it, and it didn't help him but I thought it was. So was I doing it for him nor was I doing it for me? I don't know.
Technician: All right, are you doing okay? All right, we will get started.
Debbie: As far as the medical community was concerned, they didn't give up, ever, because we weren't giving up. They wanted to do what we wanted to do. Ultimately, they knew the outcome far better than we did, but they knew that we were fighting in they were fighting with us all the way.
David Schenck, PhD: What happens in many hospitals is you have this dynamic of the family saying "Dad's a fighter, we want to give him every possible chance. Doc, we really want you to do everything you can. We aren't ready to pull the plug yet." So there is this battle imagery that almost gets heightened at the point where actually you'd be far better off with a conversation of where can you enjoy the last days were the last month of your father's life the most? Where is he going to be the most comfortable?
Narrator: Against the advice of their neurosurgeon, Garson pushed him to have her husband included in a clinical trial she found online.
Debbie: He did not want us to do it, but ultimately he went along with me and he had the drug brought to Cleveland. Peter had one dose of that drug and that was in April 2008, and it was not good. It was shortly thereafter that Peter's colon burst and he had to have yet another emergency surgery. He had to have a colostomy, so his life was a living hell.
Joanne: Why it is that so many people end up being treated very aggressively near the end of life, I mean there are multiple reasons. A piece of it is that's what we pay for. We pay doctors to do almost anything. Another is that things that doctors offer are never completely futile. They are futile in some grand sense. This person is going to die this anyway no matter what we do, but maybe we can give them two more weeks.
Bob: The question of futility is a fascinating one, because there is no good definition for it. The survival rate for in–hospital CPR is right around 17%–18%. Some people would call that futile. Some people would say, well, if the alternative is dying, what have I got to lose? Answer we might get your heart started, but your body is going to pay a price for it.
Narrator: After the final surgery, Peter Garson never recovered enough to continue treatments. He died in August 2008.
Debbie: If I had to do it over again, I would embrace him more and I would spend more time at the park or take into places that I knew he would enjoy. Yes we spent a lot of time together, but our time was spent at the hospital and I don't think all of that was necessary.
Ronald Tipps: Let's go make some coffee, darling.
Marvyn Tipps: Okay, how can I help?
Ronald: Just be with me for moral support.
Narrator: Ronald Tipps is dying. He knows it.
Ronald: A good woman keeps her knee and straight, and you do that.
Marvyn: You need it.
Narrator: His wife knows it. But his doctors never told him.
Ronald: For many years I have known my kidneys, the capacity has been going down. When I moved up here to Nashville it just got worse and worse, and so my primary care physician said you better see a nephrologist, which is a kidney doctor and I saw a great doctor. He said, "You are going to have to go on dialysis eventually." He said, "No matter what you do, you're going to go on dialysis" and that's it.
Narrator: In January 2013 Ronald Tipps experienced the modern medical system's emphasis on cure when he suffered a heart attack and went to the hospital.
Ronald: I finally got in a room, and they checked for everything under the sun, even ran a wire up through my veins or something to check my heart. I had blockages, but they were trying to compensate for it and there were branches coming out, so I was okay, but they kept sticking me and poking me and finally you'd get to sleep and the nurse "I need a blood sample." And the different specialties were working on me. I ended up I had about four different groups: cardiology and nephrology and pulmonology and what was the fourth one? I missed the fourth one, but anyway. I wanted to go home, that's all I wanted to do, and I kept asking. "Oh we can't do that because this group hasn't approved yet." Well, then you asked that group "No, this other group hasn't approved yet." I thought that was kind of inefficient.
Joanne: The medical care system has become profoundly dysfunctional around this part of life, so a person comes into the hospital and they get Dr. A and then 12 hours later they get Dr. B, and then 12 hours later they get Dr. C, and at best they are communicating a couple of minutes through a chart, and then none of them are actually in touch with the doctor on the outside who is primarily responsible, or with the five or six specialists, and that is just the doctor's side. The social working, the nursing, the support to family, all of them are at least as broken up.
David: We break the person up into engineering problems and then we attempt to solve those problems, and then we try to get the teams together so that when you sold the blood gas problem it doesn't keep me from solving the heart problem. Death is – there's no place for death in that engineering scheme, so to me this is one of the most concrete places where our medical culture reinforces fairly dramatically our culture–wide unwillingness to talk about death.
Narrator: While in the hospital still recovering from a heart attack, Ronald Tipps was told it was time to start dialysis three times a week for three hours for the rest of his life. No one discussed what would happen if he chose not to do dialysis.
Marvyn: You kind of regard that as experts, and take orders, so I didn't question it.
Ronald: Me, too, and matter–of–fact I was under, I guess, house arrest or whatever they called it at the hospital, and there's nothing I could do. They just wheeled me into the dialysis room and hooked me up, you know, and that was it.
Narrator: After just three sessions, Ronald Tipps began to question the treatment his doctors ordered.
Ronald: It was terrible. The aftermath is what I could not tolerate. I said – this is it. I'm not going to do this anymore. They said "You'll be back." The nurses said you'll be back, all of them, because you don't want to die. That's what they were saying. "You'll be back." I haven't been back yet. And I feel good instantly.
Bob: Healthcare today is a curative model. There is a problem, there is a treatment. There is a solution. It resolves, and you move on. As we get older, as we get sicker, as we layer on disease after disease there comes a point where the treatment is sometimes the disease.
Narrator: Even for patients with the most informed advocates opting out of the medical system at the end–of–life can be difficult.
Bob: My mom had horrible dementia and I had to fight with the cardiologist who was called in as a consultant when she was in the hospital with her hip fracture. They said, "What do you mean you don't want us to work it up?" It's like, no. "But what if she has X?" I was like good. She doesn't know you're there. I think the doctors want good care for their patients. I think that the challenge in today's world is to really come to recognize that what we were taught was good care and fix it at all costs may not be good care anymore. It may not be the care that the patient wants.
Narrator: The era of modern medicine has dramatically changed when and how people die. Today most Americans will die old, about 20% will die from cancers, another 25% will die of an organ system failure such as heart, lungs, liver, or kidneys.
Joanne: Already, though, we now face a whole new way of dying that was really uncommon until about 50 years ago, and that is living with multiple chronic conditions, each of which is requiring some upkeep and becoming more and more fragile in our existence, but to living a long time that way so that most of us now will die with the years of being unable to take care of ourselves, so the end–of–life in which somebody else has to help you out on an everyday basis is now the standard and that is new enough that people don't realize that is what most of us face.
Narrator: Between 2000 and 2030, the number of Americans with chronic conditions will increase by 37%, or about 46 million people. Although the way people are dying has changed, the medical system responsible for that change has not.
Joanne: So we build the system as if we were most scared of heart attacks in 55–year–old men, and it is now a system that is mostly serving 85–year–old women living with very serious chronic illness.
Richard Payne, MD: We have an acute disease detection and treatment system. I don't even call it a healthcare system, so we are set up to diagnose and treat diseases, right? And what people with chronic conditions need if they have an acute flare–up of their condition, they might need a short–term stay in the hospital, but they need a lot of guidance in terms of what their goals of treatment should be and particularly around goals that provide a better quality of life as opposed to just having a goal to extend my life 5 or 10 or 20 more days if that is only going to be in an ICU setting.
Unidentified: Want some chocolate? My mom was a meat and treat type person.
Joanne: The person is living with frailty and often needs much more hands–on care, the direct caregiver that comes in and gives a bath, the person who helps spoon–feed, the person who helps keep the house clean, helps keep people in the community longer and not having to go into a nursing home. One set of hospitals that were getting very rapid readmissions. It turned out one of the reasons was that Meals on Wheels had a 45–day wait so somebody coming out of the hospital couldn't get on Meals on Wheels program for a month and a half. While you either have to fix the Meals on Wheels program or start delivering meals in some other way. People can't go a month and a half without meals, but the healthcare system doesn't see that. It is just a system that was built on very different presumptions.
Narrator: Although the model of healthcare delivery was designed for a different set of medical issues, the way in which we pay for healthcare, particularly for older Americans, reinforces the system. For most Americans over age 65, medical care is paid for by Medicare insurance.
Joanne: Coming into the modern era, say around World War II, we thought with the healthcare system needed to provide was surgical procedures, and we insured for that and we did pretty well. Anybody who needs surgery on Medicare can get a surgery, but we never saw large numbers of people whose major problem was the problems of living, so we never built a system that tried to provide that kind of support.
Narrator: With all of the problems in our current system in end–of–life care, the future may be our greatest challenge.
Unidentified: The youth population is slowly getting older, actually not so slowly getting older. The Baby Boomers born in the late 1940s, 1950s are all now entering the Medicare age and so we are facing some real challenges in how healthcare needs to be organized, financed for this Baby Boomer population.
Patient: I can stand up.
Caregiver: I know you can. I'm not touching you.
Joanne: You think about having three times as many frail elderly as we had just a few years ago, and we will have that by 2040. So the obituary part of the paper, if there still are papers, will be three times as long. There will be funeral homes where there now are elementary schools. It's going to be such a major change we have to learn the language.
John Graves, PhD: We have this big surge of people expected over the next 20–30 years of Baby Boomers entering into the Medicare program where they have more chronic disease, it is being managed but it is also just very expensive. Among those who die, it is really going to put a lot of stresses on the taxpayers to actually finance that care because, again, it is a social insurance program financed by today's workers to pay for the hospital and medical care of today's seniors.
Narrator: In 2011, 28% of Medicare dollars were spent for care during a patient's last 6 months of life, about $170 billion. The average person with Medicare coverage also spent about $38,000 of their own money on medical expenses in the last 5 years of life. That out–of–pocket expense increased to more than $66,000 for seniors with Alzheimer's disease. For 43% of households, these medical bills exceeded their financial assets.
David: I think we are facing two different kinds of challenges. One is going to be an economic system challenge. The second thing will be a cultural, spiritual, philosophical question. Death is going to be much more obvious. It is going to be a necessary conversation all around us. How are we going to respond to that? Where are we going to make a place for that? We are in danger of consuming a lot of resources for care that isn't efficient provides the kind of care that people really want. I think even more importantly it is not providing the holistic, comprehensive care, not attending to the person with the illness in terms of their physical, emotional, and often spiritual needs, and so therefore having people suffer unnecessarily.
Mohana Karlekar, MD: The intensity of illness to be admitted to a hospital has to be pretty high, and the minute you are remotely better you are out, which leaves a narrow window to have a long conversation. It is much faster to say, let's just put the feeding tube in, and I'm not saying that doctors do that for those wrong reasons, but the system doesn't reward or compensate people for having these really long conversations will probably healthcare decisions may change.
Physician: What I need you to do is keep talking to me about what is going on.
Bob: Those are conversations that really should be facilitated in a caller environment that is not in intensive care unit, so my real desire and passion was about moving upstream and making what was going to be, if not the end–of–life, transitions towards an end–of–life situation – more understandable, or palatable (if possible), more respectable, and by that I mean having families in a place that they can respect the patient's decisions.
[Patient] Taylor? Bob Ellis.
Narrator: At age 59, Goldmann gave up a lucrative career as a critical care doctor and returned to school, becoming a board–certified palliative care physician.
Mohana: Palliative care, it is taking care of symptoms, taking care of anybody with an advanced illness, not necessarily who is dying. It is a multidisciplinary approach, so having not just doctors, but nurses, social workers, chaplains all trying to take care of a patient and their family, doing it in a patient and family–centered way, so their needs and trying to maximize their quality of life.
Richard: It is really about reclaiming the roots of medical care. It isn't just all about providing high–technology care. It is about sitting and listening and talking to people, to really understand their goals, values, and preferences, and it is not about second–class care. It's not about giving up, and it is not just about end–of–life care.
Bob: Hello, hello.
Bob: How are you doing?
Patient: I'm not doing so well.
Bob: We'll talk.
[To interview her] One of the patient's we saw today as long trouble and joint trouble and skin trouble and pain issues and breathing issues. She knows that her life is going to be shorter. She has a plethora of problems that no one Dr. should try to address all the medical management issues of fact, but as a human being who is going to look at that entire person and help them feel empowered to put together a plan of care for themselves that really validates what they want to do with their care. Those are not the types of decisions that need to be occurring in the middle of a crisis. That is frequently what we end up doing.
Mohana: When I have conversations it is not about how they want to die. It is about what their goals and values are, always emphasizing quality of life and goals, not about death and dying. That is how I approach these things. It is planning. It is not planning for your death, it is how you live your life.
Physician: You've got more function on less medicine, and that's a real victory.
Narrator: Palliative care is a relatively new field of medicine that has grown rapidly in the past decade. Today, 67% of hospitals with more than 50 beds report having a palliative care program. And that number continues to grow each year. However, a 2009 survey found any cancer centers did not refer patients until late in their disease process.
Mohana: What I hear over and over and over is "Oh, I wish someone called you in earlier." "Oh, this is exactly what we needed. This is great," but it is the perception of the physician to say "Are we ready to call them in yet" because it is almost to them a fear that we have changed our hope, and really what we want to be able to do is do these things in parallel.
Bob [to patient]: Are you busy second–guessing yourself on what else you should have done?
Mohana: There are nice studies in the literature that show when you introduce palliative care early, people don't die faster, and they utilize services better. I'm not arguing that we make people live longer, maybe we do, but we are certainly not making people live shorter, but if you can make people feel better and have a better understanding of their illness why wouldn't you do that?
Nurse: Good morning, I'm good, how are you?
Narrator: When Ronald Tipps decided to forgo dialysis for his kidney failure, he enrolled in a hospice program.
Mohana: Hospice is one subset of palliative care, and hospice is for people who do have a definite prognosis, so in our best judgment people who we think are going to live less than 6 months based on the natural course of someone's disease, and the focus is for comfort only.
Ira Byock, MD: It's not simply symptom control, but it is for the purpose of moving those things out of the way so they can focus on what is really meaningful in someone's life, so they can focus on their spiritual life and things that are important to them, so they can deal with those important relationships and do what Dr. Ira Byock calls the five things and that is saying to the folks that mean the most to me, please forgive me, I forgive you, thank you, I love you, and goodbye. Help folks have those kinds of really crucially important conversations can really be life transforming and life–affirming.
Nurse: We talked about that.
Ronald: The people that I have interacted with are so nice and caring and compassionate, it is the emotional part that to me is so good at this stage of my dying process.
Narrator: Hospice care also works with the patient and family to provide education on the illness, spiritual support, grief counseling, and respite care.
Marvyn: I think I would have been too afraid to undertake this with him without support of hospice staff. I'm not a nurse, and I don't know what to do, and that is upsetting, not to know how to manage a certain crisis or pain.
Ira: When you are anticipating what might happen, it may be so scary that you don't even want to think about it or can't bear to think about it, so one of the things that can really help to ease that burden is to know that no matter what comes down the pike you and your family are not going to have to face this alone.
Narrator: From 2000–2009, hospice use in the US nearly doubled; however, in the same time period there was also a significant increase in intensive care use in the last month of life, and about 40% of the hospice transfers came from an acute care hospital and only the last three days of the patient's life.
Ira: All of the good stuff – the life–affirming, healing kinds of things that this kind of care can do are difficult to do if a patient comes to hospice when they only have three days left in their life, but it is a difficult thing to get one's head around as a patient; it is difficult as a family member; it is difficult as a physician to get your head around we are really at the point where cure is not a reasonable expectation. It takes some courage to face it, but facing their reality then opens up whole vistas of opportunity to shape the care so that all of these other goals can be met.
Narrator: By choosing hospice care early in his disease progression, Ronald Tipps and his family have had time to prepare for his death.
Marvyn: In a way, it's been a really good experience to do this because we have had our children come. They know it is going to happen, and it is in no way helping them to deal with what is coming, so I'm happy for that. We all get to tie the loose ends, and you know really say meaningful farewells.
Ronald: I had a good run. I have enjoyed life, so that is why I refused further dialysis – just let nature take its course. I've ended up with the love of my life, and that's the way to go. I want to go out my way.
David: We actually know how to get people out of the hospital and into their homes for a death in the home. We know what it looks like. We don't do it, so it is not just the people want it and they don't get it, but actually we know how to do it. What we don't know, what we are unable to do is to break the conversation and the institutional patterns around fighting death. How you change those conversations I think is very difficult.
Liz Schatzlein: My father was always scared of death. He was horrified of death, but he did tell me at one point he didn't want people to unhook him before it was time. That was the only thing that he really ever was forceful with me about and that he talked about. The rest of it he wouldn't discuss. He just would not discuss death.
Narrator: Liz Schatzlein's father is not alone. In a recent survey, almost 30% of Americans have not discussed their end–of–life treatment preferences with anyone, even among severely or terminally ill patients fewer than 50% had documented their treatment preferences in their medical record.
Joanne: We don't have the language. We don't have the metaphors. The families don't know how to bring the issue up.
Unidentified: I think you get around really, really good.
Joanne: If you start talking to your 82–year–old great–grandmother about how she thinks about dying, there's this sense that just bringing it up is in proper and impolite, whereas of course she is thinking about it. You know, she's buried her parents. She's buried it to her three siblings and maybe a couple of children, so there is this goal in our ability to talk it over.
Keith King: Good afternoon, everyone. My name is Keith King and I am with the Live Hospice.
[To interviewer] Everybody wants to get to heaven but nobody wants to get on the bus. We want to get to heaven, but we've got to find another way because going to heaven means I have to die.
Unidentified: Make sure everybody knows these things, because if you are going to be hooked up to a machine, I mean do you really want to live?
Narrator: Keith King's job is to get people talking about death, or more accurately the end of their lives as a community outreach coordinator for a Live Hospice.
Keith: There are times that I've gone out and there have been good crowds, and then there are times when I have gone out and it doesn't matter income level of the neighborhood, the race, or the denomination. You will go out and you are expecting a big crowd and when you get there, there are not that many people there is nothing that we did, it's just that the people don't want to talk about death. They are not ready to talk about death.
Bob: I think we are dealing with a deep–rooted natural human fear of dying. No one wants to die. People don't go to the hospital to die. People don't go to the doctor to die. People really want to live as well as they can for as long as they can, so a lot of things have to happen for this conversation to be done and done well.
Narrator: For Schatzlein, her father's inability to talk about his end–of–life wishes left her scrambling to help him when his dementia made it too dangerous for him to live alone.
Liz: When he began to really falter and we wanted to move him down here to Nashville, I didn't have power of attorney so I called his lawyer's office and I said
Look, my dad is really failing fast. I need to get power of attorney here or something so that I can take control of the situation, and the lawyer said "You need more than the power of attorney that is already in the file?" My dad had signed a power of attorney 10 years earlier and never told anyone. I was absolutely dumbfounded. I just thought
Oh my gosh, and we only known. Why didn't he tell me, why?
Keith: And when we say dying in America is painful, there is no peace involved, we neither witnessed it on TV or we've witnessed it with our own family members. I have. I know other people have where you have a family member who passes away in a very uncomfortable condition in the hospital with tubes everywhere, people everywhere, there are crash carts. It's not comfortable. We don't want to deal with that.
Narrator: Acknowledging and talking about the end–of–life is also something many doctors don't do well. In fact, doctors historically were trained to not tell patients the truth of their condition.
Emily: Doctors were very loath to tell the truth. It was tremendous secrecy. During about 1900, almost all doctors concealed a cancer diagnosis, and that was true until the late 1960s. Doctors increasingly of course today tell patients if they have a cancer diagnosis, but what they hide is the prognosis.
Narrator: In fact, studies have found that doctors routinely overestimate survival times of terminally ill patients. At the same time, patients and families also tend to overestimate their chances of surviving despite what their physicians tell them.
Ira: Psychologically, human beings, including doctors and nurses, have an optimistic bias. We tend to think that we are going to do well. We tend to think that we are going to be the exception to the rule. That translates over into how I might feel about my illness and how I'm going to do compared to the statistics about folks with my particular problem. That translates into how I practice medicine because I have an optimistic confidence that I'm an especially good physician and my patients will do well. It is just a built–in part of being human coupled with an innate fear and discomfort of dying, so it is a difficult thing to talk about.
Narrator: Shortly after Liz Schatzlein moved her father to Nashville, he suffered two major strokes. The neurologist told Schatzlein there was no hope of recovery.
Liz: My initial reaction was no, isn't there something we can do? And we put an IV in? Can't we hydrate him? Can't we bring him back somehow, and the neurologist said "Liz, it's over." Suddenly it became real to me what was happening was this man who had taught me to ride a bike, had been there on the front row of my school plays, walked me down the aisle was about to permanently leave, and that was the reality that hit home.
Narrator: With no hope that her father would recover from his stroke, Schatzlein made the decision to move her father to hospice care.
Liz: When the hospice staff came on board, they brought a sense of peace to a very traumatic situation. I felt very bad. I felt like I was throwing in the towel on my dad. They helped me reconcile those feelings. They gave me not only compassion for my father's situation, but self–compassion, because you can be very hard on yourself at that moment. I didn't feel like I was in this alone anymore. That was a tremendous support. It really was. I felt like a weight had been lifted off my shoulders at that point. One good thing that has come out of all of this is my husband and I sat down with our son and we told him point by point by point how we wanted all of this done, and we have filled out the documents and we have got it all down. I even have the funeral service planned. I have everything planned – everything. My son will not be faced with these kinds of burdens when I go.
Craig Strickland: Today we are talking about our physical lives as it relates to living well and dying well. I think our medical advancements have outpaced our spiritual understanding. Our technology has outpaced our morality
[Interviewer] in my almost 40 years of ministry, honestly this is the first time I have ever tackled this subject. I don't even know why it has never dawned on me to tackle the subject, and I'm not alone. I mean, I think most ministers are where I am.
Narrator: Craig Strickland's church, Pope Presbyterian, is located outside Memphis in Shelby County, Tennessee. In 2010, the residents of this area got some bad news. Their region was one of the most expensive places to die in the US marked by high rates of intensive care use and inpatient hospital stays in the last 2 years of life, none of which improved outcomes in comparison to other regions. In response, community leaders sought out ways to get people thinking about and planning for the end of their lives.
Donna Abney: It's hard work to change culture. One of the things I think, though, is that so many more of us are dealing with our parents, our spouses – it's not easy to do, but I do believe it is becoming much more accepted and people are much more responsive and want to hear how to plan for this better.
Narrator: In 2010, Methodist LeBonheur Healthcare joined all other major healthcare organizations in the Memphis region to take on the task of improving end–of–life care. The group, working under the organization in healthy Shelby, focused on getting as many people as possible to create an advanced care plan – a formal document that outlines the kind of care someone may want and who would have the power to make healthcare decisions if he or she is unable.
Donna: We first looked a lot at acute care, you know saying oh well of course we should be having conversations with chronically ill people over the bed as they are dealing with end–of–life issues. Probably pretty naïve because we quickly learned that that is the worst time to be having a conversation. We backed up and said let's go upstream. Let's look at how we can have these conversations before the crisis.
Narrator: The group began offering training to all staff on advanced care plans as part of their benefits package. As major employers in the region, they could reach more than 20,000 employees and their families.
Chaplain: Jeff, I'm Dan Wilburn.
Patient: How are you?
Narrator: The hospitals also offer information about advanced care planning to everyone admitted regardless of their health status.
Donna: So for anyone who is interested, our chaplains go in and bring them a copy of five wishes and talk a little bit about the document itself. One of the things we love about the five wishes document is it's not just the medical side of what do I want to happen medically. It has a very spiritual aspect to it about what I want my family to know, how I want to be treated, how I want to feel at those points in time.
Narrator: The community efforts are now reaching local congregations. In the spring of 2013, Pastor Craig Strickland invited oncologist Kurt Tower to have a public conversation about how to die well.
Dr. Tower: When there is no more treatment, the poor soul who has the cancer doesn't want to say
I want to quit, I don't want to do it anymore, and the family doesn't want to let go, so somebody has to say
Craig: We gauged the success of the interview that Kurt Tower and I did together by the people who came back the following Wednesday night just to continue the debate and we have a Wednesday night program, many churches do, and there might be, I don't know, 1200 people who come to it. On this night, I think there might have been twice that number, so we could tell we hit a chord. It was the biggest attendance we have ever had on a Wednesday night.
Narrator: healthy Shelby is also moving its education efforts out to the broader community. They hope to reach people like Joyce Waters.
Joyce Waters: I might come to work and say, I got to thinking about death this morning, and it was so real it woke me up, but I never took it any further than that. Of course, you know now that I'm approaching 70 it gets more real to me the older I get.
Narrator: Though she was initially uncomfortable with the idea, Waters participated in a class on advanced care planning offered through the Healthy Shelby initiative.
Joyce: It helps you to be able to, with much greater ease, broach these subjects like I want music playing. I want loved ones to hold my hands. I don't want to be in pain, get me out of pain at all costs, you know, those kinds of things. I want socks on because my feet have been cold all my life and when I get to the end I want my feet warm and put some socks on me.
Narrator: With no family living in town, Waters has also chosen a good friend to make her healthcare decisions if she is unable.
Joyce: It was important for me to have this document in place because I have no children and I have no spouse. I have three siblings who live out of town. I think I'm doing them a favor by putting in writing the things that I would like to have happen as I near the end of my life and cannot make decisions at that point for myself.
Craig Strickland: We shouldn't leave that discussion for doctors who barely know us to have to have with us. We need to have that discussion in community among people we worship with, who think we think, who believe what we believe – that's a much more natural place for that debate to take place, and up until this generation it did.
Donna: It's about taking control of some very important decisions in our life that I think many of us just by nature differ, and we wait and wait until it is too late, and so we are trying to make the discussion about the quality of your life towards the end of your life mainstream, and it is acceptable and it is something everyone should give as a gift to their family.
David: The healthcare system and our culture at large faces an enormous task as the Baby Boom generation is going to go into the face of care that we think of as geriatric care. There are going to be lots and lots of people dying. They have to die somewhere. We are going to have to have these social conversations or our fundamental healthcare system and our economic system along with it are just going to collapse.
Joanne: We are going to have to be willing to talk honestly with one another in a way that we haven't been willing to talk honestly. We keep thinking that somehow if we just do the right thing in prevention and if we somehow manipulate the Medicare funding a little bit, somehow something wonderful will happen. We are going to have a large number of people who need hands–on care every day. We are going to have to figure out how to function with that.
Kathy: As individuals, as families, and as a community we can no longer afford to ignore the inevitable. The needs of the aging Baby Boom generation are going to make it very clear how well we deal with today's challenges in end–of–life care. While we cannot predict our future, we can prepare for the possibilities by letting those closest to us know what our treatment preferences are. Talking to your loved ones about end–of–life issues doesn't have to be difficult. There are many resources available to help you start the conversation. Please go to our website at wnpt.org/agingmatters to find a list, thank you.