No one wants to think about death — especially their own. But there are those tending to the dying who don’t want this topic pushed aside. They’re working in hospitals, hospices, and homes along with patients to help make sure each person has a “good death” that fits them, their families and their culture. In this episode of ON OUR OWN TERMS, terminally ill patients and their caretakers share their stories.
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TRANSCRIPT
BILL MOYERS: I’m Bill Moyers. Like you, I don’t want to think about death –especially my own. But I have realized that death is pushing through the door we try to keep so firmly shut. Parents age before our eyes. AIDS and cancer take friends and loved ones. And baby boomers — that most powerful generation in our culture — face their own mortality even as they must care for their elderly parents. So like it or not, we cannot push death back through the door. That’s one reason we did this series. The other is that there is a movement afoot driven by our hope for a better death. There are doctors, nurses, hospice and social workers –and patients themselves –pushing to improve care for the dying. What they’re doing will affect us all. In these four programs, we’ll report on that movement through the intimate journeys of the dying, their families and their caregivers. All were remarkably generous in allowing us into their lives. They believed their stories would help all of us understand the importance of living with dying.
BILL MOYERS: He began to record his thoughts about living with dying … a journal of life’s last chapter from that moment when illness struck.
PAM ROFFOL DOBIES: We were engaged and I joked with him. I said when was the last time you had a physical, being a physician you would expect -wrong. He said oh it’s been 15 years. So he agreed to go into the doctor and never said anything to me about what he suspected.
BILL BARTHOLOME: I was having some trouble swallowing, I particularly noticed that about bagels. That they wouldn’t go down anymore. So when I went to see a physician, just to sort of humor me, decided well, we’ll get him an x-ray study. I went in and had an upper GI test where you· swallow barium and saw immediately while the test was going on that there was a mass in my esophagus.
BILL MOYERS: You knew this in effect this was it?
BILL BARTHOLOME: Right. I knew I was terminal diagnosis at that time.
BILL MOYERS: Did you say why me? I’m too young.
BILL BARTHOLOME: Interestingly enough, I never did. It seemed appropriate. I had been living my whole life sort of in preparation for it. Doing medical ethics, teaching death and dying, it almost seemed like if somebody has to get this damn thing, why not have it be somebody who can deal with it.
SHEILA KRAUS: I was totally shocked. I thought he was going to die that day. That’s how it felt to me that well he’s gone tomorrow and that’s it, and he constantly had to tell me you know this is just today. It’s not going to happen today. You have to just live with it.
BRIDGET BARTHOLOME: There’s really no one in our family that has died. Just to think of the impact of not only it would have on our lives and our little sister, who’s just eighteen.
BRIGET BARTHOLOME: Fishing.
BILL BARTHOLOME: Fishing. Claire caught. We still have some of the fish she caught. It’s hard when you weigh 173, you realize that at one point you weighed 216. What was clear at the beginning was that it was a terminal illness. I would die from it, but nobody was willing to really put numbers around it. I wanted to have about 6 months at least so that my fiancee andI could get married, and my daughter, my middle daughter, had recently gotten engaged too so I wanted to be able to pull off these two weddings.
BILL MOYERS: To gain precious months, Bill decided to undergo surgery to remove his esophagus …. His experience as a patient was devastating.
BILL BARTHOLOME: The pain of the surgery was like nothing I’d ever experienced before. At one point, I was wheeled down to x-ray for a study to look at how my healing was going in my esophagus. And I was left in a hallway all by myself, crying and trying to get people to, stopping people who walked by and say would you please ask these people when they’re going to be able to take me and call the nurse and get me back to my room. I had been without pain medication for several hours and nobody seemed to take that very seriously and if you don’t take pain in from a full professor in your own medical school very seriously, can you imagine how not seriously you take it for everybody else. The only solution that I really saw was getting the hell out of there.
BILL MOYERS: Out of?
BILL BARTHOLOME: The hospital. I knew I wasn’t going to be okay until I got out of there. The chemotherapy was presented, as there’s no chemotherapy that will alter your prognosis. Well, for me that was a great relief because I wanted nothing to do with chemotherapy or any anticancer treatment. I’d watched people go through that and seen them get caught up in it. So…
BILL MOYERS: What do you mean?
BILL BARTHOLOME: Well, most people in the United States who have stage four cancer die as cancer patients. They’re actually undergoing anticancer treatment often times days before they die. It just sort of dawned on me and Pam that it was going to be up to us. That we had some time and that what we ought to do is cram as much living as we could into that time.
BILL MOYERS: Why did you want to get married knowing that you were under a death sentence?
BILL BARTHOLOME: From a purely pragmatic, practical sense the advantages of being a surviving spouse seriously outweigh the advantages of being a surviving fiancee that was the excuse I gave myself. The reality of it was that I could not believe it. That she would actually do it.
PAM ROFFOL DOBIES: I don’t think it ever really crossed my mind to not get married, it was just it was something that I wanted to do before diagnosis and it didn’t fit for me to stop thinking that way because in my logic of all of this we are all dying. None of us have a guarantee I had thought about death in that context, the quality of what you are doing on earth. It better be good because you don’t know how long you’re going to be here.
BRIDGET BARTHOLOME: I’ve found it wonderful that despite all this training as a physician his reaction to his disease was to not be aggressive, no I’m not going to get a CAT scan. I don’t want to know. I’d rather live on the other side of the mirror very much different from his handbook of science.
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BILL BARTHOLOME: I think I went through a process. There was a period of about six months after the diagnosis that I experienced a kind of grief that I had never known I cried, you know, uncontrollably, bawling until you have no more tears. It was suffering that transcended pain I mean it was I, I had a lot of pain during that time, but it was not in the same league as the suffering. But that didn’t really last very long. You do get the rewards of your grief work and those are that you move down the road to a place where it’s okay and you can begin embracing that reality and discovering what it’s like to live in what I’ve been calling the light of death, live as a terminal person. If you don’t expect to see spring when fall comes and then you are around and you get to see spring. You don’t experience it as spring. You experience it as an incredible miracle. I think death transforms our living in ways that we in this culture do not understand. I think we need to think of death as sugar, as something that gives life that pizzazz, makes it sweet.
BILL BARTHOLOME: Here ‘s to family and friends and and love and health and· everything else.
BILL BARTHOLOME: Since November, I lost the function of a vocal chord. I have seen the lesions growing on my lungs and in my trachea. And I’m beginning to sense that it may not be a year. I can now touch my cheekbone and I’m in contact with the skeleton that I’m becoming. One of the real advantages I’ve had is that I’ve not depended on anybody else to interpret the reality of my situation. It’s very difficult for Americans to find the support they need for not getting caught up in rescue and the rescue fantasies of their providers. Prolongation of life is something that American medicine got caught up in but it’s not what makes life valuable …how long life is.
DR. PAT CARALIS: This is high tech.
BILL MOYERS: Where you make decisions of life and death?
DR. PAT CARALIS: Absolutely, absolutely, unfortunately yes.
BILL MOYERS: This is what all of us dread. I mean we want it if there is a chance of saving us, but if there’s not a chance of saving us, I dread lying there unconscious or in pain.
DR. PAT CARALIS: I think that’s what most people fear is that we are going to use all this technology and they will lose themselves in it.
DR. PAT CARALIS: Ms. Tandarich I’m really glad that you came today so we can talk about …
DR. PAT CARALIS IS A SPECIALIST IN END-OF-LIFE CARE AT THE UNIVERSITY OF MIAMI JACKSON MEMORIAL MEDICAL CENTER.
DR. PAT CARALIS: What I’d like to know are some specifics.
DAUGHTER: You want to be home with all your animals and your friends and your people.
DR. PAT CARALIS: Many surveys have shown that Americans feel that they want to die at home. The unfortunate thing is that they don’t. All of us feel our home surrounded by all our family and the things that we are comfortable and familiar with is the way we all want to go. That’s the good death we all envision. For the most part, if we have to deal with a lingering death, that can happen in an institution. All of the studies at this point have shown that Americans still die in pain. They still die unfortunately without the things and values that are important to them because people have not planned or systems are not available for them to be able to die peacefully and supported.
DR. PAT CARALIS: Nancy? Cómo se siente? Are you having pain now?
SOCIAL WORKER: No.
DR. PAT CARALIS: Okay.
DR. PAT CARALIS: Is it hard for you to breathe on the machine?
NANCY MARTINEZ IS PARALYZED WITH LOU GEHRIG’S DISEASE. FOR TWO YEARS, THE HOSPITAL HAS TAKEN EVERY MEASURE TO GIVE HER THE CARE SHE WANTS.
DR. PAT CARALIS: She originally had resisted the intubation. She actually had to have discussions several times are you clear that you won’t be able to live if you if don’t get this. And she finally relented to have a ventilator. She currently is able to move her eyes about a millimeter or so to the left and the right, which allows us to continue to communicate with her. She can’t talk.
BILL MOYERS: So you’re literally keeping her alive.
DR. PAT CARALIS: Literally, if you stopped feeding through the tubes, took her off the ventilator, didn’t turn her, she can’t do anything for herself She can only move her eyes.
BILL MOYERS: How often do you have to do this?
SOCIAL WORKER: Every 15 minutes.
BILL MOYERS: Every 15 minutes? Around the clock?
SOCIAL WORKER: Uh huh. They brush her teeth everyday.
DR. PAT CARALIS: Yeah she looks good.
NURSE I: Perfect teeth.
BILL MOYERS: Do you feel like she’s your family?
SOCIAL WORKER: Oh yes.
NURSE: Oh yes, number one! She’s the queen of Central 6.
DR. PAT CARALIS: It’s never easy for physicians to say we don’t have the pill that will stop the dying. We don’t have the surgery that will take the cancer out. I think that’s always hard because we were always traditionally trained to cure. But it’s just as important to care.
DR. PAT CARALIS: Good afternoon. The Ethics Committee of Jackson Memorial is meeting because we’ve been asked to review a case.
BILL MOYERS: The Martinez case poses a question for the hospital. Some doctors now wonder if their efforts are doing more harm than good. They’ve asked the ethics committee to meet because she faces yet another crisis.
DR. PAT CARALIS: She currently has an infection, it is to be considered a life threatening infection if it doesn’t receive antibiotics. The team would like us to assist them in deciding what would be the best course of treatment for this patient.
BILL MOYERS: The question: is it good care to give the antibiotics or not good care?
DR. PAT CARALIS: Her condition is so severe and the fact that she now has resistant organisms, that provision of these antibiotics just was a manifestation of futile treatment.
KEN GOODMAN: Are they convinced that it won’t work or that it’s not worth it even if it does?
DR. PAT CARALIS: I would say probably the latter.
MALE DOCTOR I: Do we have any evidence from her that she perceives her current condition as being one of suffering?
DR. PAT CARALIS: She’s treated with narcotics at this point for pain, but I think there’s also a concern on the part of the medical people that there will be suffering if there isn’t already in view of invasive treatments.
DR. GINA D’AMATO: She’s harboring disease. She’s harboring infection this one may be able to be treated. But the next infection is gonna be even more resistant.
MALE DOCTOR I: Some people value being alive. We don’t know what motivates a person to accept suffering in order to stay alive.
DR. PAT CARALIS: In talking with her the other day ,she does believe in God and she believes that God, again these are yes or no questions. It’s very hard to structure more philosophy out of this or value systems but she believes that God is the only one who can take her.
KENNETH GOODMAN: When you say the treatment is futile, it’s futile relative to particular kinds of illnesses. It seems like you’ve got opportunities to keep her going for awhile that has value to it. So on that axis it’s not going to be a futile intervention.
DR. PAT CARALIS: At the risk of being the devil’s advocate in this committee, how much is enough? How many hurdles do we do? I know most of us don’t think of antibiotics as extraordinary but, why prolong that by throwing on one more extraordinary technology that we have in medicine.
MALE DOCTOR I: Because it’s-
KENNETH GOODMAN: Because it’s worth it to her and that’s what we do here.
DR. PAT CARALIS: Again, devil’s advocate. Do we climb at the mountain every time somebody tells us to it’s inappropriate or do we follow the tenets of our profession which is to not provide treatments when clearly medicine is no longer of benefit?
DR. PAT CARALIS: I think we are all struggling with the definition of what’s enough. What are the limits? But I think that the closer we come to it, the easier it will be to see it. There’s no antibiotic in the world, there’s no intensive care unit in the world, there’s no technology we can do to stave off death and so that’s truly futile treatment and to offer that to the patient is a false hope.
SOCIAL WORKER: (Speaking Spanish)
DR. PAT CARALIS: This is the daughter?
DR. PAT CARALIS: This country should expect not just the best and latest but really the most appropriate kind of care. And I think it’s very appropriate to expect that when you die, you should not be in pain, you should be supported and you should be respected.
THE ETHICS COMMITTEE RECOMMENDED THAT NANCY MARTINEZ CONTINUE TO RECEIVE ANTIBIOTICS. SHE LIVED ANOTHER FOUR MONTHS.
DR. PAT CARALIS: We need to try. We need to try harder to achieve a good death. We as health care providers are constantly on the edge. We don’t always have the answers and the questions sometimes come very fast and furious. The key to any kind of approach is to respect people’s experiences and that really requires you to understand your patients.
BILL MOYERS: Miami is a city of such multiple personalities. Does this make your job harder?
DR. PAT CARALIS: Absolutely, when you have cultural differences and diversities and beliefs and expectations it brings it to the forefront even more, the challenges involved dealing with death and dying. We have little Haiti, which has it’s own belief systems and its own cultural diversity. We have an African American community that’s rooted in the deep south. We have not only a large Jewish community, but we have again the ethnic mix of the Jewish community. We have not only Cuban, Cuban Americans, but we also have from the Latino population from Central America and South America and even Spain. It takes, I think, vigilance on the part of all of us to respect difference and to incorporate that difference into the treatment plan. We found particularly in Latinos and recent immigrants and in Asian families that the consent process in telling bad news is something that perhaps isn’t done the way it’s done traditionally. Families have said “don’t tell Poppy he has cancer.” That it’s an expectation maybe particularly in Latino families that Poppy not know. And if they don’t know what’s happening then you’ve taken that important part of treatment choices away from them. And I don’t think any family wants to do that.
BILL MOYERS: Patients who don’t know how sick they are are also not likely to sign advanced directives stating their wishes for treatment should they lose the ability to communicate.
DR. PAT CARALIS: If we don’t prepare our physicians for our values and choices and they don’t prepare us for our options and opportunities, then we’re all not going to go through a good death. We’re going to suffer and we’ll do so needlessly. We found that African Americans particularly are reluctant to withhold and withdraw life prolonging treatments, even if those treatments that are useless, they hang on to that. In our research, Latinos were kind of in the middle. It was the non-Hispanic whites who were the most willing to withhold and withdraw life prolonging treatments to sign advance directives and to support euthanasia. What’s behind those differences? One thing that’s been proposed is that traditionally people who are of different cultures have felt biased, have felt discriminated against and indeed a lot of studies now show that that’s true.
MARIAN GRAY SECUNDY: If I come into an African American patient who’s coming into the hospital and ask do you have an advance directive and you explain if you can’t talk for yourself and have you indicated what you would like done. What do you mean if? I can’t talk for myself? I can talk for myself now. Well, in the event that while.you’re here in the hospital you can’t talk for yourself. What do you mean if in the event? Well, why would I not be able to talk for myself? Well, that means that you just don’t want to treat me because you don’t value me or you think that I don’t have the money.
DR. PAT CARALIS: It’s important for me to know what are your values and preferences would you want me to keep you on a ventilator ’til the very end. Because every minute counts to you and I would say to you there’s gonna be a point when even a ventilator won’t help you. So, you’ve got to say to me, does every minute count to you regardless of what you might feel because helping you die in the way you want is something that we’re going to have to work together to achieve.
DR. CARLOS SANDOVAL: Many Americans do die alone and in pain and in the hospital. Our American culture encourages us to be independent and we’re going to do it. It’s part of our fighting spirit.
BILL MOYERS: As a Miami psychiatrist who counsels cancer patients, Dr. Carlos Sandoval sees every day how culture and belief affect the dying process.
DR. CARLOS SANDOVAL: Many Americans I know have no support system and it’s due to the fact that the American family has become fragmented. How many people have all the brothers and sisters living in the same city?
DR. CARLOS SANDOVAL: [Speaking in Spanish]
DR. CARLOS SANDOVAL: My experience as a Latino is that the difference is Latinos die accompanied by their family.
DR. SANDOVAL: She’s sleeping well.
DAUGHTER: Yeah, she’s sleeping real well. I’m not but, she is. (Laughs.)
DR. CARLOS SANDOVAL: You’re not sleeping. It’s common for them to die at home. It’s important that you as a caregiver that you sleep as well.
DAUGHTER: 24-hour duty.
DR. CARLOS SANDOVAL: It’s common for them to die surrounded by their relatives. (Speaking in Spanish.)
DR. CARLOS SANDOVAL: I’m really lucky. My parents live here, my aunts and uncles, all my brothers and sisters live within 10 blocks of me. If I should become ill, I’m surrounded automatically by family.
BILL MOYERS: Dr. Sandoval’s mother –born and raised in Cuba –knows the different ways of death from personal and professional experience. She’s an anthtroplogist.
DR. CARLOS SANDOVAL: Psychotherapy. I can see she’s really afraid.
MRS. MERCEDES SANDOVAL: Death is a serious thing in this culture or one that we live in there is a great denial. They take to it like any event that you handle by paying for your funeral, dealing with your last testament, whatever it is, you know, and like as if it could be dealt with in a materialistic fashion. And I really believe that we have dehumanized death as we have dehumanized other aspects of culture. At least I was raised in a town where the dead people were so important that they were more important than the living and I’m not kidding. They showed up at night under the Mango tree.
DR. CARLOS SANDOVAL: Yeah, but American ghosts don’t like to go to Mango trees. They don’t do very well in Miami. They like to spook old Victorian houses up North.
THOMAS LYNCH: We’ve put such a distance between ourselves and our death that when it occurs, when there is actually a death in the family there’s an embarrassment about it. We love to go see frightening movies. We like death on that scale and we like death on the scale that we can laugh about it, you know, the sort of Halloween thing. But that normal ground where people love and grieve, we are uncomfortable with. And I’m– and that’s the ground I’m really interested in. That’s what I do.
BILL MOYERS: For most of his life, the poet Thomas Lynch has watched how his neighbors in Milford, Michigan meet death. He now runs the undertaking business founded by his father.
THOMAS LYNCH: Our lives were constantly being interrupted by the deaths of others, it seemed very natural. And when I think of it I mean this is in our nature. It is the most natural thing we do. We will not all pay taxes, we will not all sleep with another member of our species, but all of us will cease to be. Our characterizations of death have always been based on the notion that life is good, death is bad. You know don’t go there. That said, we’ve always had this spiritual enterprise that says even though we appear to die, there is another kind of life. Whether we do that as Buddhists or Christians or Jews or secular humanists, we try to make some sense of what happens when that body ceases to be. To the extent that language and symbol and metaphor and ritual and ceremony speak to these concerns, it’s always been interesting to me.
MARIAN GRAY SECUNDY: There are probably great universals there in terms of all faith traditions, but there is something that is unique about the African American faith traditions and the music. It’s the words and the music that somehow come together to provide this capacity to assist people in coping and surviving when facing the dying experience, the dying process. It’s joyful, it lifts you up.
HYMN: It Is Well With My Soul
BILL MOYERS: Philadelphia’s Bright Hope Baptist church is the spiritual home to Marian Gray Secundy. Her brother preaches here, as did her father and grandfather.
WILLIAM GRAY’S SERMON: From the day we are born we are on a one way street that leads to death. Some in the morning of life, some in the midday of life, some in the late afternoon of life or the twilight or the midnight, but all will die.
BILL MOYERS: As a scholar, Secundy has studied how people search for comfort in the face of death.
MARIAN GRAY SECUNDY: The spiritual was a call to freedom. It was a coded message about release from the oppression of slavery. The songs of the church reflect the history of our people.
HYMN: Soon, I will be done with all the troubles of the world, troubles of the world, troubles of the world ..
MARIAN GRAY SECUNDY: The trials and tribulations of oppression, slavery ..
HYMN: No more weeping and a wailing …
MARIAN GRAY SECUNDY: But they also tell us about overcoming and about coping and about survival.
HYMN: I want to meet my maker, I want to meet my maker, I want to meet my maker, going to live with God!
MARIAN GRAY SECUNDY: Earth has no sorrow that heaven cannot heal, earth has no sorrow that heaven cannot remove, so whatever comes it will be, it can be, it would be handled by faith, belief and by God.
BILL MOYERS: Including death?
MARIAN GRAY SECUNDY: Including death.
HYMN: I’m going to live with God …
MARIAN GRAY SECUNDY: That we can make sense out of things that make no sense. We can create miracles out of things that do not appear to be possible.
SUKIE MILLER: 3 out of 4 Americans believe in an after death. George Gallup has done the statistics God bless him and the finding is that 74% of Americans believe in an after death.
BILL MOYERS: Sukie Miller counsels terminally ill people and the doctors who treat them. She encourages frank talk about what people believe at the point of death.
SUKIE MILLER: They believe it will be a journey. They believe it will be spiritual in nature, they believe they will grow. 3 out of 4 Americans, it’s here. It’s in the culture, in the heart, it’s in the body of these people, of all of us, of 3 out of 4 of us, but we don’t talk about it.
BILL MOYERS: Traveling the world, she explores cultures that do have an affinity with death. People not only talk about dying but embrace rituals that anticipate it.
SUKIE MILLER: These are people who live with death, death around them, death is part of it–very narrow division between life and death, very narrow. The Mexican Day of the Dead first of all it’s a joyous occasion. The people gather at the cemetery. You gather around the grave of your loved one. And there are mariachi bands. It’s a beautiful night and it’s filled with color and filled with life. And then there’s Day of the Dead art. It’s in skeletal form. Now what the skeletons are doing is life. But, they are still skeletons. In the Western culture death is–death is really a drag. It’s sad, but it isn’t as it is in other cultures, the beginning of a voyage where you send people off.
THOMAS LYNCH: I think maybe we’re into convenience and cost efficiency and all these other high value added items of our culture. This is really the first generation certainly the first century in which we’ve had a choice about these things. Up until not too many years ago people didn’t have a gold card and a cell phone by which they could have their dead disappeared from the planet through the offices of folks like me. If you pick up the obituaries you’ll read the obituaries they’ll say don’t send flowers or don’t do this or don’t do that, no letters. The emphasis is on don’t stir, you know, don’t let this bother anybody and yet when the princess dies millions of bouquets materialized overnight. It seems like these were all the flowers that should have been sent to the mothers and the fathers and the aunts and uncles and the grandparents whose obsequies were so tiny and ignored in the name of good taste. I would love to see people return to the kind of a normalcy where they sent their flowers to their own people, instead of the sort of icons.
BILL MOYERS: When your father died, you yourself prepared his body, why did you do it?
THOMAS LYNCH: Well, I was with–I remember thinking you know this is my father’s body. This is my father, this is what my Dad will look like when he’s dead. And then there was this realization that this is my father dead it really wasn’t until I confronted his body that the whole business began to make sense. This is my father dead.
MARY-KATHERINE MENIKHEIM: I think my perspective on death changed when my mom died. I was 21. Since then, I’ve had a different perspective than my peers perhaps I’m not afraid of dying I don’t want to die any time soon but I’m not afraid of it.
BILL MOYERS: Mary-Katherine Menikheim will spend this day with the dying. So will Alicia Rojas Wainer. They’re new volunteers at a San Francisco hospice.
ALICIA ROJAS WAINER: I’ve never lost anybody and we’ve never really been touched in the inner circle of our family by death so it feels like a big unknown.
BILL MOYERS: Rojas Wainer plans to become a doctor.
ALICIA ROJAS WAINER: I know that I’m headed for five to nine years of serious brainwashing and what I’m beginning to understand is that Western medicine for the most part in the way it’s taught and practiced is lacking this reverence for life and this understanding that death is so much part of it.
PHILIP MARCUS: I’m Philip Marcus. I used to work in a nursing home and so I was around death a lot. People talked about their feelings about dying. And it was really sad that a lot of time they wanted to be at a place where they weren’t.
BILL MOYERS: In the heart of the city, they will learn a different way of caring for the dying.
FRANK OSTASESKI: Everything about this culture tells us to run in the other direction from death and for one reason or another you’ve come here to be part of this training to face death directly. And I think that takes some courage. We’ll find out how much courage it takes.
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BILL MOYERS: Frank Ostaseski is founding director of the Zen Hospice, established thirteen years ago to help dying patients who cannot stay at home.
FRANK OSTASESKI: We take our elders and we shut them away in nursing homes and institutions so that we won’t have to see their pain. We even put rouge on people in the coffin. Always to keep death at arms length. So I want to invite it into the room this death, so that we get to know it like an old mend.
BILL MOYERS: Although the Zen Hospice is based on Buddhist philosophy, its resident-patients and the volunteers who help run it come from many different backgrounds.
MARY-KATEHRINE MENIKHEIM: Nine years ago my sisters and my father took care of our mother in our home. I don’t think I’ve ever lived as intensely and I miss that. And I want to visit it again and in my mother’s honor who helped us all in a really beautiful death.
BILL MOYERS: During a week of intensive preparation, the volunteers are asked to study pictures of hospice residents and even to imagine their own dying.
ALICIA ROJAS WAINER: The hospice work teaches a sort of psychic resilience, the ability to absorb loss and fear and grief. It teaches you how to absorb those emotions and learn from the rather than hold them at bay.
FRANK OSTASESKI: First really we have to learn to listen to ourselves as we practice that then we can bring that to the bedside.
BRUNI (VOLUNTEER): What would you like? You want your headphones?
FRANK OSTASESKI: Bruni, just put one in.
FRANK OSTASESKI: To accompany someone is just to give them our attention.
BILL MOYERS: You would think the dying get a lot of attention because of the extremity of their situation.
FRANK OSTASESKI: I think sometimes we have to distinguish between what’s getting the attention. Is the illness getting all the attention or is the individual? This human being that’s there is getting the attention.
FRANK OSTASESKI: Beau is a man who likes to be in control.
FRANK OSTASESKI: One guy in the house right now, Beau. He’s kind of a tough cookie with a big soft heart, a little cantankerous on the surface, but kind as can be inside. He came to use from a small downtown hotel. Wasn’t quite sure about us, tested us every day. Wanted to see if were we reliable and we just began to create a relationship with him, a friendship with him. Now, he’s very close to dying. He’s a little scared. We’ll see how this goes for him.
FRANK OSTASESKI: Can you see me Beau? Things are changing, Beau.
BEAU: I don’t want to die young from the cancer. I want to die old.
FRANK OSTASESKI: Suppose it doesn’t go that way.
BEAU: I can handle it.
FRANK OSTASESKI: You can handle it? You got a whole bunch of people around you who really care for you, Diana, Martha, Bruni.
FRANK OSTASESKI: We’ve been doing this with each other for hundreds of years and we’ve just forgotten. In the last 50 years in our love of technology, we’ve forgotten what it was like to have grandma in the other room or grandpa laid out in the parlor.
BILL MOYERS: How would you compare what you do for Beau and your other patients and what kind of care they would get if they were in a regular hospital?
FRANK OSTASESKI: For one, the emphasis here is not on treatment but on palliative care, on comfort care. So that’s a big difference.
BRUNI (VOLUNTEER): You seriously want to get a cigarette now?
FRANK OSTASESKI: But also, I think we will let him lead more. We will let him show us how he needs to do this. Each person’s dying is unique and we have to follow them. They have to make the decisions, not the doctor, not the priest, not the insurance company.
BILL MOYERS: Do you try to deal with physical pain?
FRANK OSTASESKI: Sure. Addressing a patient’s physical pain is extremely important and the hospice movement as developed this to the point of an art form. In most cases, we can help to reduce 95 to 98% of an individual’s pain.
BEAU: Can you bring me some Valium?
KEVIN MCCKIE (VOLUNTEER): I’ll ask Diana.
FRANK OSTASESKI: However, suffering isn’t relieved by morphine. Pain is relieved by morphine. But suffering is our relationship to pain and that sometimes requires something very different. That sometime requires a different kind of healing touch.
PHILIP MARCUS: It’s just amazing what you end up doing here. I was with one of our residents and she was looking at her nails and saying, ‘Oh, these don’t look good. This paint’s chipping off.” I said, “Oh you need a manicure.” She said, “Yeah.” And you know, I thought, do anything you can. And when I was done, she looks at her nails and she said, “You know these look so good, I think I want to stick around for a while, but not too long, but I want to have nice nails when I go see my friends.” And she was referring to when she dies, that was nice.
GAIL (VOLUNTEER): Coming Julia. I left you stuck on the couch here.
JULIA: –being annoying.
GAIL (VOLUNTEER): You’re not.
JULIA: What I would like is two pieces of toast so I can put this wonderful omelet in between.
GAIL (VOLUNTEER): Okay, do you want these lightly buttered?
JULIA: Oh well.
GAIL (VOLUNTEER): Or plain?
JULIA: Lightly buttered would be wonderful. I wasn’t going to put you through extra trouble, but sure.
GAIL (VOLUNTEER): It’s no trouble.
FRANK OSTASESKI: We change their beds, their soiled linens, we make soup, we hold their hand.
JULIA: Lightly buttered. How about marmalade.
GAIL (VOLUNTEER): Marmalade. The orange marmalade. You want that with the egg?
FRANK OSTASESKI: We listen to lifetime of stories, nothing special really, just simple human kindness.
This transcript was entered on June 24, 2015.
