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, Bill explores American cultural attitudes towards suffering and how they are sometimes used as a rationale to withhold medications — attitudes that palliative-care physicians hope to change in order to make dying less frightening and less painful.
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TRANSCRIPT
BILL MOYERS: I’m Bill Moyers. Many people we met in reporting this series told us they fear pain and suffering at the end of life more than they fear death itself. I share the feeling; I want to go gently into that night, thank you – I want a peaceful death. But what most of us want is not what most of us get. Despite medicine’s great strides in discovering how to control pain and provide comfort too many of us die in needless misery. Old taboos and false hopes get in the way. This is beginning to change, thanks to some of the people you’ll meet in this program, the second in our series. Some are doctors and nurses. Some are their patients. Providing compassionate, appropriate care is a constant challenge. But the reward can be what everyone hopes for: a death with courage, love…even humor. It’s a different kind of care.
DR. DIANE MEIER: Where are we going? 10 East.
JOHN CARTER: 10 East.
MORRIS: 10 East.
BILL MOYERS: These doctors and nurses have a mission that sets them apart.
DR. STACIE PINDERHUGHES: What room is she in, Jane?
DR. DIANE MEIER: 24 A.
MORRIS: 24 B.
DR. DIANE MEIER: 24 B?
MORRIS: Umm hum.
DR. DIANE MEIER: Chart search.
MORRIS: Good morning.
BILL MOYERS: Three years ago, Mt. Sinai medical center in New York City began a program of palliative care… to palliate means to comfort. The founder and director is Dr. Diane Meier.
DR. DIANE MEIER: I think every doctor feels that somehow they’ve failed when a patient dies and palliative medicine is an attempt to take a different perspective on that and say we will all die, but how we die, the circumstances under which we die, what happens before we die is under our control.
BILL MOYERS: In the midst of a major medical institution, a teaching hospital, the team’s focus is not cure, but comfort—to ease the suffering of ill and dying patients. Each day the team moves from floor to floor, case to case. And often crisis to crisis…
MEIER: Let me just answer this page. Alright Matt, hang in there.
DR. STACIE PINTERHUGHES: Matt is a 23-year-old male with a history of desmoid tumor in his bowel. He’s had several resections and the result of that is he has no bowel left. He’s had a full bowel resection and the plan was ultimately to for him to have an intestinal bowel transplant.
DR. DIANE MEIER: He’s so catabolic. Yes. And is he has severe liver dysfunction and is ventilator-dependent and can only communicate…
BILL MOYERS: At today’s patient care meeting, the team is struggling with how to control this patient’s pain while his family and other doctors are discussing surgery.
DR. DIANE MEIER: The guy is dying and no one’s talking about it. It’s, you know, it’s just not on the screen. Even though it’s perfectly obvious to everyone, if you look at him but it’s just not allowed to be discussed.
DR. DIANE MEIER: Hi, Matt. Thank you.
BILL MOYERS: When you looked at him you saw that he couldn’t make it?
DR. DIANE MEIER: I think anyone who came in fresh into the room, who hadn’t been involved in his care for months, could see that. But his family and Matthew himself were still hoping for him to get strong enough to be able to go through this transplant, as were a number of members of his medical team. You know, making a a positive difference because I think everyone is getting so frustrated. We need to make very clear what people should be doing to help you and make sure you agree that those are the right steps. When we came in he was having a tremendous amount of pain and there was a lot of confusion and misunderstanding between the staff and his family about the benefits and risks of pain medicine in his case. His family was worried that giving him medicine for his pain would make him unwilling to fight to come off the ventilator. That he would not fight to get off that ventilator and get better. And they thought that he needed to be awake and in pain to fight the disease.
BILL MOYERS: And isn’t there a sense that once you talk about palliative care or pain medicine the family and the patient sometimes think, oh they’re giving up on me.
DR. DIANE MEIER: Right.
BILL MOYERS: It’s the end. I’ve got nothing to look forward to.
DR. DIANE MEIER: Exactly.
BILL MOYERS: It’s all over.
DR. DIANE MEIER: Exactly. That’s exactly what happened and we spent a very long time teaching Matthew and his family that people who are in pain are exhausted, depressed, discouraged and not sleeping and that as long as he’s in pain there was no chance of getting him off the ventilator. That in order to get him off the ventilator we had to make sure he slept well at night. We had to make sure he wasn’t in pain so that his energies were not going into being in pain and then there was a chance he would be able to come off the ventilator.
DR. DIANE MEIER: As we promised you last week, if you decide you need pain medicine to be up in the chair or to participate in therapy, it’s ordered for you, all you have to do is ask for it. It will be given 15 minutes before. And it does seem compared to last week, at least…am I right, is the pain better compared to last week? Much better. So at least one thing we have managed to improve.
BILL MOYERS: To coordinate Matt Wilson’s palliative care, Dr. Meier must state her case to all the doctors involved.
DR. DIANE MEIER: Matt is dying no matter what we do.
MECHANICK: I just need someone to give me some direction.
DR. DIANE MEIER: I understand that there’s no primary central physician running the show coherently.
MECHANICK: Right.
MEIER: That’s the problem. There’s you, there’s me, there’s David, there’s the surgeon.
MECHANICK: Would he be a candidate for your services, your unit up there?
MEIER: He certainly would, but there would have to be some decisions made about the goals of care…
MECHANICK: Maybe I’ll put that on the table that would be the first order of business. ‘Cause then…
DR. DIANE MEIER: Well, we can’t sort of offer moving him to the palliative care unit until we start talking about his prognosis. What I’m worried about is that we’re trying to create a trusting relationship with the patient and family who’s main focus is on the surgeon and main trust and emotional connection is with the surgeon. And the surgeon isn’t there yet. So what we don’t want to do is say you know go and hang crepe and then have the surgeon says everything’s going to be fine. Once we just build you up and get you rehab, we’ll operate on you. I think our area of work is for the surgeon.
MECHANICK: Alright I’ll talk to him and we’ll see.
DR. DIANE MEIER: Yeah, I feel like ,THE DEATH OF IVAN ILYITCH. It is about this Ivan Ilyitch. Tolstoy is writing about this guy who is dying but nobody is talking about it. He knows he’s dying, the doctor knows he’s dying, the family knows he’s dying, but they refuse to talk about it. They keep telling him if he would just eat, if he would just take his vitamins, if he would just do what the doctor says if he would just, if he would just, if he would just, he’d be fine. And there’s this silence surrounding the facts which everyone knows. So, the patient dies alone, completely alone with no connection, no real connection with anyone that he cares about. And it’s a very profound story because it’s happening every day with all these patients here, it’s the same thing.
MECHANICK: Well the doctors are afraid.
DR. DIANE MEIER: The doctors are afraid, the families are afraid, the patients are afraid and in an effort to protect the suffering is really profound because people are facing something very frightening all by themselves.
BILL MOYERS: Do you give your colleagues, your peers, your students copies of this?
DR. DIANE MEIER: Every student who rotates with us, every intern, every resident, every fellow gets a copy of this, along with a syllabus which is much more scientifically based.
BILL MOYERS: How do you take that message into what you do here?
DR. DIANE MEIER: By opening up the possibility of discussion with patients and families, we don’t force the discussion on people. We don’t insist that they address the fact of their mortality at whatever distance from now it may be, but we recognize that most patients know what’s happening to them and most family members know what’s happening to them, and the silence between family and patient and between doctor and family and patient is in itself a source of tremendous suffering and loneliness.
DR. DIANE MEIER: Worrying?
BILL MOYERS: Matt Wilson died eleven days later.
DR. DIANE MEIER: I don’t think we ever quote “persuaded” Matthew and his family that we should be giving up on life-prolonging efforts and I don’t think that was ever one of our goals. Our goal was first and foremost to make sure he was physically comfortable and I think we achieved that goal. The goal we did not achieve was helping this patient and family grab the opportunity to say what needed to be said before he died. And that continues to haunt me.
BILL MOYERS: She was also haunted by an earlier case, one that drove her to start the palliative care program. A patient who had first refused treatment was readmitted with a seizure, unable to speak for himself . . .
DR. DIANE MEIER: No one had him appoint a health care proxy decision maker at the first admission. So while his children knew his wishes, they were not legally empowered to insist upon them. He was admitted to a neurology floor was not able to eat and drink, had a tube put in his nose to feed him, kept pulling it out, every time he pulled it out, his hands were restrained so that he wouldn’t pull it out. And I remember talking to the neurology intern or resident taking care of him and feeling very badly on behalf of the patient and saying, “We’re torturing this patient.” And he said, “He’ll die if he doesn’t have the tube feeding, he’ll starve to death.” And it was clear that he really cared about this patient and wanted to do the best for him. It’s not that he was a bad doctor, it’s not that he was a cruel person, it’s not that he didn’t care, he just didn’t know. And that was a breakthrough moment for me. So, I completely shifted my career path. And that person really crystallized my feelings and my intention to try and do something about it.
BILL MOYERS: To do something about caring for the dying?
DR. DIANE MEIER: About teaching people how to take care of dying people…that it isn’t doing nothing…that there’s a whole body of skills and discipline and science behind it.
DR. DIANE MEIER: Good morning.
BILL MOYERS: Harold Resnick learned just three days ago that he has advanced pancreatic cancer, a sure killer. He is also in danger from blood clots.
DR. DIANE MEIER: The best image I can come up with was a deer in headlights. He just looked terrified.
DR. DIANE MEIER: Right now the nurses are coming in and offering the medicine every four hours. He didn’t want to take any pain medicine, although he did acknowledge that he was in pain. And it seemed very clear to me that taking pain medicine was acknowledging the diagnosis and what was wrong with him. And the best I could do with him was to let him know that it wasn’t going to earn him a front row seat in heaven to suffer.
DR. AVI BARBASCH: Let’s talk about the underlying problem. That’s the first thing.
BILL MOYERS: Dr. Meier and the oncologist, Dr. Avi Barbasch, are meeting with Harold Resnick, his wife, and two sons to explain palliative treatment…to help them understand that comfort is possible although a cure is not.
DR. AVI BARBASCH: And the recommendation to me was supportive care. That is to get you comfortable, to treat you so that you don’t get clots, give you adequate pain relief, but I didn’t think that you would derive very much benefit very frankly from chemotherapy.
DR. DIANE MEIER: To add to what Dr. Barbasch said is that no matter what you decide to do, whether you decide to go for what we think is a very marginal benefit from chemotherapy because that’s just your philosophy of life and that’s what you want to do. or you decide to go home and enjoy this reasonably good quality of life that you have right now whatever you decide to do, you will get care for your symptoms, your mood, your energy level, depression, and anxiety and that it’s not an either or decision is what I’m saying. It’s not like either “comfort measures” or “chemotherapy.” It’s comfort measures no matter what you do and no matter how long you live. But you have to take that into consideration.
BENITA RESNICK: Are you listening?
HAROLD RESNICK: Yeah, I’m listening but I don’t like getting involved in this until I hear it all.
BEN RESNICK: What’s the difference between your care, say, and hospice?
DR. DIANE MEIER: That’s a very good question and one that many doctors don’t know the answer to. So the difference between what we do and hospice is in hospice, you pretty much have to agree that you’re not going to pursue any life-prolonging efforts like chemotherapy or radiation. Because under the hospice benefit, which is a Medicare benefit, the focus of care is strictly comfort. For palliative care, you don’t have to make any choices like that. It’s not like you have to decide. You’re ready to only do comfort measures and you never want any other kind of treatment. You will get palliative care no matter what else you decide whether you decide to do chemo or not.
BILL MOYERS: Still, there is confusion and fear. The urge is to keep fighting by rejecting comfort measures and focusing only on trying to cure the disease.
DONALD RESNICK: We’ve been presented in effect a very passive approach, which is, and I accept your explanation of palliative medicine support, but that’s passive, it is reactive to symptoms, etc. We all as a family tend to be more proactive.
BEN RESNICK: But the only cure for any kind of cancer pretty much is chemo?
BARBASCH: No, at an earlier stage without the spread surgery was also an option. But at this point, that’s not an option.
DONALD RESNICK: Are you aware of any experimental approaches that are out there that for this particular patient might be something to at least explore?
DR. AVI BARBASCH: Are there people trying different types of modalities? The answer is yes. Would he be a candidate for those treatments? I’m not sure. Because they need a certain life expectancy.
BEN RESNICK: This guy is tough. He taught me…this guy is tough. If it is beatable, he’s going to beat it. I’m looking at him now. I have a baseball game this afternoon, he could be in that chair at my baseball game this afternoon. That’s what I see with him. You know, until he’s sick, you know, where I look at him and see that he’s terribly sick, I want him, you to know, to have as good as quality as possible.
DR. AVI BARBASCH: All we’re trying to do is inform you as best we can.
HAROLD RESNICK: I’m a good listener, and I take what I hear and I analyze it. I have to have a feel first for the doctor that I’m dealing with. And in my opinion right now, I’m dealing with a good – an A team. And I feel that way, I really do.
DR. DIANE MEIER: As far as I’m concerned, you guys are the A team and you’re the important team and we’re just here to help you.
DR. AVI BARBASH: They asked some very good questions. Nobody asked about the actual thoughts of numbers of longevity.
DR. DIANE MEIER: Yeah I was waiting for that question.
DR. AVI BARBASH: Yeah, I was too.
DR. DIANE MEIER: That’s a very common question – how long do I have, doctor – and what I would have said in response to that, as I’m sure you would have, is that no patient is a statistic, every person is an individual.
DR. AVI BARBASH: Right. Absolutely.
DR. AVI MEIER: And statistics are averages but individuals are individuals and it’s impossible to predict in fact.
HAROLD RESNICK: A couple of times, you hear words that sort of give you a bit of a shock. I still can’t get used to the word cancer. I still can’t get used to the word, the termination, and the length of time you have. I look at everything with rose-colored glasses and I always say hey, if it’s curable, I’ll get cured. But that’s me. That’s not what the doctors are telling me.
BENITA RESNICK: We all have different feelings and opinions. I am more quality of life than quantity and my sons—my oldest son is the doer, you know. My youngest son is the carer. And between them and me and him, we’ll manage whatever decision is to be made. And if they give the same kind of care where he’s pain-free as he can and is awake and is alert, I mean this is wonderful.
HAROLD RESNICK: If they give me this way of life, it’ll work because what I’m going through now is tolerable. And when I see that they can improve it when there is discomfort or pain or whatever, I’m sort of satisfied.
BENITA RESNICK: We’ll do it, we’ll do it to the best we can for as long as we can. Right old fellow?
HAROLD RESNICK: Yeah.
BENITA RESNICK: You too, baby?
DR. DIANE MEIER: And he did finally agree to regular administration of pain medicine. And when he was more comfortable and not spending all his spiritual and physical energies trying to be stoic with pain, he became able to kind of let the feelings in, acknowledge what was happening to him, express tremendous love for his family and two or three days later he died in the hospital. We didn’t expect him to die. We thought he was going to go home, we were working very hard to get him home and get him hooked up with home-care services. What we think probably happened is that he had a blood clot that broke off and went to the lung which is common, unfortunately common complication of the type of cancer that he had can lead to a sudden death.
MOYERS: With patients and families like the Resnicks, the palliative care team must work hard to make the transition from cure to comfort. Sometimes there is also resistance within the hospital itself. The fact is too many americans, even in a hospital like Mt. Sinai, die in pain – a situation palliative care doctors are determined to change.
MEIER: Palliative medicine is a discipline that requires training. And most of us got no training. I went through four years of medical school at a really good medical school in the United States, three years of internal medicine residency, two years of geriatric fellowship. That’s nine years of training after college. I did not have a single lecture in pain management. Not one. Somehow suffering left the radar screen for medicine because of our obsession with modern technology and cure.
JOHN CARTER: … people get frightened…
MOYERS: One of the first rules of palliative medicine is to make sure the patient’s wishes for end of life care are recorded…
CARTER: I’m kind of worried. I think he’s at great risk to deteriorate quickly…
MEIER: Very rapidly.
CARTER: and without having advanced directive on the charts and the…
MOYERS: Advance directives either state the patient’s wishes for care or — what’s necessary in new york state — appoint someone to make decisions if the patient cannot…
MEIER: And we are compulsive in getting evidence of the patient’s wishes, documenting that on the chart and in trying to encourage patients when they’re capable of communicating with us of telling us who they trust and these conversations should happen in a doctor’s office in the primary care setting when the patient is healthy.
MOYERS: Do they often not?
MEIER: They often do not.
MOYERS: Doctors do not discuss advanced directives?
MEIER: Everybody is uncomfortable with it. Doctors are uncomfortable with it; family members are uncomfortable with it; patients are uncomfortable with it because discussing advance directives and healthcare proxies means confronting even at a – even with a screen between you and the recognition one’s own mortality and it’s very painful and its very difficult and we shouldn’t minimize it. It’s not something anybody in our society is very good at.
MOYERS: Talking about death?
MEIER: Talking about death.
MOYERS: Particularly our own?
MEIER: Particularly our own.
SEAN MORRISON: What do you worry about?
JOYCE KERR: I worry about the pain. The pain will get to a point where…
MOYERS: Joyce Kerr is in the late stages of ovarian cancer.
JOYCE KERR: I don’t want to be in pain. I don’t care what you do. You know, knock me out for three days or something.
MORRISON: We could do that.
JOYCE KERR: Yeah.
MOYERS: Dr. Sean Morrison is co-director of the palliative care program. He talks honestly with patients about what is happening.
JOYCE KERR: You know, I always said it’s, you know, it’s going to make me die a slow, this painful death, because I’ve taken care of myself all my life.
MORRISON: I don’t think it’s going to cause you to die a slow, painful death. Okay? It may cause you to die a slow death, but not a slow, painful death.
JOYCE KERR: Good.
MORRISON: Joyce Kerr is a woman in her sixties who I got to know because her daughter is one of the medical residents here. And I initially became acquainted with her because her daughter asked me to see her for pain management and I think that I continued to see her for her pain. And I think we spent maybe ten percent, twenty percent of that time actually talking about her pain, maybe ninety percent of the time talking about what it was like to live with ovarian cancer, what it was like to know that she was dying and how she wanted to live out the remaining time in her life.
JOYCE KERR: See that picture, there they all are.
MORRISON: Yeah.
JOYCE KERR: That’s my support system.
MORRISON: It’s pretty big.
JOYCE KERR: Yes, I’m very fortunate that way. It’s just nice having them around.
MORRISON: It sure is. To bring you back to your worries aside from the pain, is there anything else?
JOYCE KERR: Well, I’ve never done this before. I don’t know what death is, you know, I have no…I’m a good, you know, I’m a Methodist. I, you know, I’ve … children taught Sunday school. And I’ve always… as I told him yesterday, I mean, I even had trouble with Santa Claus. I mean I somehow got around that with the spirit of giving or something like that.
MORRISON: You know, there’s no right way to do this.
JOYCE KERR: Well, I guess you’re scared to death really. Basically.
MORRISON: There’s no right way to do it. You know I wish I could tell you how to do it.
JOYCE KERR: Yeah, there’s times when I’ve taken so much morphine I don’t care one way or the other and that’s fine with me. That would be okay. I just don’t want to go out that way because I don’t want to be frightened. I have a feeling I’m going to wake up some morning and — and uh… [sighs] You know, maybe, you know, something’s going to go here. [crying] Well, you know, all my bodily functions work fine I go to the bathroom, I eat, you know, I do everything and then — you know, there’s going to be a blockage or there’s going to be something and then I think I’m going to get scared to death.
MORRISON: What would happen?
JOYCE KERR: I guess you’d bring me into the hospital and fix it maybe.
MORRISON: Yeah. Or we’d fix it at home.
JOYCE KERR: Pardon?
MORRISON: Or we’d fix it at home.
JOYCE KERR: Well, you can’t fix a blockage in the bladder or something. I mean, you need your liver, for things. And that’s going pretty fast.
MORRISON: What do you understand about, what do you understand about when your liver starts to go? What are you worried about?
JOYCE KERR: I think that I’ll really know that I’m dying. I think I’ll probably [crying] haven’t faced it yet.
MORRISON: You know something may but I don’t anticipate your waking up as you said one morning and saying, oh my god, something catastrophic has happened. If it does, we’ll be there and we’ll take care of it. Okay? But I don’t – we can plan for that but I don’t anticipate it.
JOYCE KERR: Who do I call? You or Dr. Segner?
MORRISON: You’re going to call me. You’re going to call me and before I leave we’re going to talk about hospice, and you’re going to call hospice and me. All right?
JOYCE KERR: Okay.
MORRISON: This is my area of expertise.
JOYCE KERR: Okay.
MORRISON: This is what I do for a living.
JOYCE KERR: I don’t cry except when I’m with you. But that’s good. See. Then when I get to the next step I know, you know, I know what I’m doing.
MORRISON: You let me know if I’m pushing you too far.
JOYCE KERR: No you’re not, you’re not. Somebody needs to.
MEIER: The most important message your patient can take away is not abandonment. You’re there, you’re with them, you’re walking beside them, come what may and also not to take away hope, you now that there’s always hope. There’s always hope. There’s hope to live with physical comfort. There’s hope to accomplish important things.
MOYERS: But in many cases the palliative care team has little time to work with patients and prepare them for what’s ahead.
CARTER: And then we were called as caretakers.
DEBORAH NITT SHERMAN: They came right away.
CARTER: So they were still settling down from hearing a lot of the news, and I’m not sure how much the patient took in or understood. So I think…
MEIER: We don’t get involved until the physician calls us in as a consultant. So we have to wait for the patients’ regular doc or the interns and residents taking care of them or the nurses and social workers taking care of them to have a light bulb go off in their head and say oh maybe palliative care could help us with this patient.
MORRIS: Yes, hi… its Jane Morris, you met and the members of my team yesterday in palliative care, Dr. Carter and…
MOYERS: To make sure that palliative care continues when a patient goes home, the team’s clinical director, nurse Jane Morris — works on many fronts: medical, social and financial.
MOYERS: Do you have to spend a lot of time on the financial side on questions of insurance, who’s paying?
MORRIS: Well it’s certainly in thinking about what the options are you have to look at the insurance pieces because that really helps to really identify what the options are for people. The patient’s needs may well exceed what is covered and then how to magically put a plan together that really safely meets the needs of the patient and their family.
MEIER: Jane, wouldn’t you agree that the biggest barrier to taking care of patients through the end of life is that most insurance doesn’t cover the kind of personal care needs that people have at home?
MORRIS: Um, hum. Absolutely.
MEIER: Medicare doesn’t cover it. The hospice tends to cover only a few hours a day. When I say personal care, I mean home health aide or a home attendant, someone who can help bathe the patient or help dress the patient or shop or cook or assist someone getting in the bathroom. That unless you are independently wealthy or have Medicaid you pay for that out — it’s just unaffordable for most people. Its $10 or $15 an hour and that is the biggest barrier that we face to getting people home with a safe and appropriate plan of care.
MEIER: Hi.
MORRIS: You remember Dr. Meier and Dr. Pinterhughes.
GUENETH OMERON: Dr. Pinterhughes?
PINTERHUGHES: Yes.
MORRIS: So how are you feeling?
MOYERS: Seventy-nine year old Gueneth Omeron – a singer and voice teacher – has incurable pancreatic cancer. She wants to go home and continue teaching.
MEIER: Well what we’re trying to do is figure out what we can do to make sure you’re as comfortable as possible so that you can function independently at home.
OMERON: The pain management now, you’re getting closer.
MEIER: Good, good. We will try to achieve perfection….
OMERON: Oh, boy.
MEIER: Let’s do the calculation, okay, she’s on…
MOYERS (v/o): But for Mrs. Omeron working out the plan of care means balancing the cost of home care and of pain medication.
MEIER: It turns out that the Fentanyl patches cost goes up with dose. A 75-microgram patch a month of 75-microgram patches costs $2000.
MEIER: There are Fentanyl patches which release continuously release low amounts of medicine through a skin patch in to the blood stream for a 72 hour period. Those are incredibly expensive. It’s a wonderful medication and it’s been a tremendous breakthrough so people don’t have to take a pill or a liquid every two to three hours around the clock. Its allowed people with chronic pain to get up and have a normal life.
PINTERHUGHES: We’re going to switch you over to a patch and that’s something that…
MEIER: One of the biggest problems in taking care of her is that we were called to consult because her pain was not well managed. And we ended up roughly quadrupling what she was getting to switch her, we did the calculations back to morphine and then back to Fentanyl…this is 400 micrograms of Fentanyl.
MALE DOCTOR: Okay.
MEIER: Which is several thousands of dollars a month, probably 3 to 4 thousand dollars a month.
MALE DOCTOR: What’s her insurance?
MEIER: Prohibitively expensive
MALE DOCTOR: No insurance
MORRIS: Well, not that would cover drugs…
MEIER: Not a medication plan…
MORRIS: We’re going to call the patient assistance program from the drug company.
MEIER: You know, obviously, if we don’t have to have a line in her and have her hooked up to a machine that would be preferable and if money is all that’s standing between us and appropriate much less invasive analgesia then let’s try to get the money. The other thing is this patient needs her money for home aid hours because she’s only going to get four hours under either hospice or home care. I don’t know how much…
MALE DOCTOR: Otherwise she has to be placed.
MEIER: Right. And she’s totally cognitively intact and has a good performance status at this point so to put this woman – she won’t get into Calvary or Cabrini in-patient hospice because she’s not actively dying and a nursing home would be absurd.
MALE DOCTOR: Metastatic pancreas to the liver?
MEIER: She’s not dying fast enough.
MALE DOCTOR: I thought they wanted longer stays.
MEIER: No. They bill under Medicare Part A they’ll send her home.
MORRIS: …the patient’s goal and the family’s…
MEIER: Failure to die.
MALE DOCTOR: Failure to die?
MEIER: That’s what they call it – failure to die. It’s ridiculous.
MEIER: We wanted to talk about how to get her safely home in a way where we can be confident that her symptoms were well controlled. So there are several sets of issues and I think we can get the pain under acceptable control. Remember, she was on a 75-microgram patch when she came to the hospital and we’re putting her on a 400 micrograms today. That’s over 4 times higher. It may still not be enough but it’s in the ballpark.
JENNIFER SHULTZ: And none of the insurances work with …
MEIER: Well some insurances cover medications but hers does not. If she were Medicaid eligible that would cover her medications. To be Medicaid eligible you have to be at a pretty low-income level and I don’t know whether her finances are such that she is Medicaid eligible. We should look into that.
SHULTZ: I don’t think so.
MOYERS: When she first left the hospital, Mrs. Omeron had to pay for the pain patches herself. The palliative care team continued to work on the finances.
MEIER: She went home, she had a few comfortable weeks at home with her daughter and her niece to whom she was very attached and very close and she had some good quality of time at home with them. But then her tumor progressed and her pain got worse and they were unable to manage at home. She needed to come to get intravenous medications. So for several days she was in the hospital on fairly high doses of medicines by vein and still was not well controlled and at that point we called the anesthesia pain service and gave her a spinal block which completely controlled her pain. She was totally comfortable after that. And several days later she died very peacefully with no pain and no distress.
MOYERS: At the hospital?
MEIER: At the hospital. Mr. Resnick and in Mrs. Omeron, in both of their cases, once their physical pain was well controlled, they seemed able to come to terms with what was happening to them and to have a really wonderful time expressing love and gratitude to the people closest to them.
MOYERS: Is pain management routinely done here at the hospital before you’re called?
MEIER: We’re working on that. We’re trying to do something called making pain the fifth vital sign. Every shift in the hospital, a patient’s heart rate and blood pressure and respiratory rate and temperature are taken: four vital signs.
MOYERS: The fifth?
MEIER: The fifth vital sign. Where every time vital signs are taken, a patient is asked on a scale of zero to ten or one to four, are you in pain, if yes, is it mild, moderate, or severe and if it’s moderate to severe, there’ll be a mandatory response.
MOYERS: There’s no way to see pain…there’s no measuring machine…
MEIER: That’s correct.
MOYERS: There’s no –
MEIER: No blood test.
MOYERS: No blood test.
MEIER: No physical diagnostic sign. This is an area of big confusion for doctors and nurses. That a patient who’s sitting there looking like you perfectly comfortable and at ease can be in severe pain. And people think that if someone’s not writhing and screaming they can’t be in severe pain, but that’s not the case. Most people in severe pain look like they’re not in severe pain. They’re just dealing with it as best they can and if you don’t ask, you won’t know.
KATHLEEN FOLEY: One of the greatest barriers is the lack of awareness by healthcare professionals, of the presentation of pain and our unwillingness to just believe the patient. So every – now national guideline says – starts with believe the patient’s report of pain.
MOYERS: Dr. Kathleen Foley is trying to make palliative care available to more patients across the country. As a pioneer in the field, she founded the program at New York City’s Memorial Sloan Kettering Cancer Center. Now she’s working to educate medical professionals.
FOLEY: Barbara, these are all the members of the Pain and Palliative Care Service and we wanted to have a chance to have you talk about your pain…
MOYERS: Each week at grand rounds… the medical team hears a single case. This time it’s barabara white who has breast cancer.
FOLEY: But now?
BARBARA WHITE: But now, whatever you’re giving me is terrific.
FOLEY: So it’s controlling your pain, it’s not making you nauseated. You’re awake and you’re able to pretty much do your activities of daily living. … What we’ve come to recognize is first of all, the pain’s in the brain. And that is, I think an important issue because there’s been a growing anti-science sentiment to the field of pain with arguing that it’s all in the personality of the patient, it’s all in their psychology and not in their physiology and their pharmacology. And I think probably what we’ve learned more than anything else in the last 25 years is that there’s a very sophisticated system of both sensations of pain and modulation of pain within our brain, within our spinal cord, and that we can activate that by using drugs.
BARBARA WHITE: You have wonderful drugs and the morphine-like drugs are miraculous I mean you can function, you can think pretty clearly…
MOYERS: White is also being prescribed methadone for her pain — the drug used for heroin addiction…
FOLEY: Do you think there’s a stigma to taking pain medications? Have you felt that?
WHITE: I think so. Absolutely. People think you’re a drug addict. I don’t know why but you hear little sly remarks. Oh, you take that kind of medicine. Well people on the street take that or you know….
FOLEY: But how about feeling? Just the idea that that you might become a drug addict…was that ever an issue for you?
WHITE: I don’t think so. I think the idea of addiction becomes ridiculous. I can’t understand people worrying about it. It just makes no sense to me….
RICHARD PAYNE: We have patients who have severe pain who require these medications for these medical purposes and when we have given it to them, we found that the patients don’t develop the craving that we thought, we were sort of taught they would develop.
MOYERS: The director of Sloan Kettering’s Palliative Care Program is Dr. Richard Payne.
PAYNE: If by addiction you mean that you are going to lose control, that you will continue taking this medication even when you don’t have pain and that you will lose your ability to function, that’s just not what we see. We see that patients take morphine just like they take any other chronic medication. They take it for their pain; they don’t take any more than we prescribe. In fact, many patients take less than we prescribe because they’re so afraid of becoming addicted.
PAYNE: Miss Rosenthal. Hi, Dr. Payne.
ALICE ROSENTHAL: Hi.
MOYERS: Alice Rosenthal has survived cervical cancer for six years. But multiple surgeries left her with chronic pain….
PAYNE: When you take medication how much does the pain go down on that scale? Like say if the pain is an 8 you think it goes to 0 when you take medication or no?
ROSENTHAL: No, I would say I can get down as far as a 2.
PAYNE: Okay 2.
ROSENTHAL: The way I see it is that the doctors saved my body but I really feel that the pain service saved my spirit and salvaged my life.
MOYERS: Alice Rosenthal also has found help in another side of Sloan Kettering’s palliative care service – programs like art therapy that offer emotional and psychological support.
ROSENTHAL: For me in art therapy the feelings that come up the most are the hard ones. The life and death issues and how hard I’ve had to struggle to stay alive and how hard it is to keep going.
PAOLA LUZATTO: You can choose a face or a person or a symbol to represent yourself.
LUZATTO: The possibility of creating symbols give a freedom to say something that may be very painful or very important, very personal but at the same time it is half way. It is said but it is not said. And so it is still under their control. So our therapy fulfills a very special kind of a gap between being silent and talking about something.
WILLIAM BREITBART: There has been this evolution in the concept of what palliative care is. Now when we talk about palliative care this is something that starts from the very first moment of diagnosis of a life-threatening illness.
BREITBART: Did she have any depressive symptoms before her diagnosis?
MOYERS: Dr. William Breitbart is a psychiatrist working on the palliative care service.
BREITBART: I think the other change has been a movement to also recognize that psychological symptoms are a very important area of focus.
BREITBART: And she asked for help, asked for psychiatric help but the house staff sort of responded by saying, it’s normal to be depressed when you’re this sick and have advanced disease.
FEMALE DOCTOR: Yes.
BREITBART: The fact of the matter is that while pain is a very important problem and very distressing problem for many patients, it tends not to be as prevalent as anxiety, worrying, depression, fatigue, existential concerns, fears of being a burden, loss of meaning. Those turn out to be even more common concerns of patients and symptoms that are even more prevalent than pain.
EDITH TEICHMAN: I was very depressed and my first thought in mind was maybe I should seek help because it’s not normal for me to just withdraw. Because I’m a very go-getter. I just don’t sit at home and just say that’s it. I just felt the world is coming to an end.
BREITBART: Our clinical experience is that when we have patients who have a high desire for death who ask the physician to assist them in suicide or ask the physician to kill them that very often depression is the issue. Unrecognized untreated depression. And when we treat that depression this desire for death, remits and disappears.
BREITBART: Thank you.
TEICHMAN: Thank you.
PAYNE: We have psychiatrists and internal medicine doctors and pediatricians who work in a team with nurses, with social workers and we each bring a perspective about the burden of the illness on the patient but this is very expensive. Its labor-intensive. You have a lot of people thinking about one patient.
MOYERS: We’re sitting here in the midst of one of the state-of-the-art medical institutions in America, what do we do about people who never make it here, people in poor neighborhoods out there, people who don’t have the luxury of this kind of consideration?
PAYNE: Well, this is a tremendous concern that medically under-served population and particularly poor people really have even fewer choices in how they die and the manner in which they die than people who are educated and advocate for themselves.
GREG GRAMELSPACHER: This is the neighborhood is called Holville – I don’t think our medical students or residents probably drive through this neighborhood very often yet many of their patients come from here.
MOYERS: Dr. Greg Gramelspacher — knows he is fighting an uphill battle. Acting almost alone, he is trying to bring palliative care to Indianapolis communities where doctors and patients are often strangers to each other….
GRAMELSPACHER: Hello. How are you doing, Willie? OK? How are you today? We made it back. Good to see you. The one thing I wanted to ask you about was the swelling that you have in your leg.
WILLIE ALEXANDER: (Inaudible)
GRAMELSPACHER: I’ve made an effort to try to take the palliative medicine program that I’m trying to develop out of the hospital and into the community, into people’s homes. That’s where they spend most of their lives and that’s who they spend their time with and if you can make sense of the whole picture of their lives then you’ll have a better understanding of how to care for them as they’re dying.
GRAMELSPACHER: Good. That’s good.
GRAMELSPACHER: We, as physicians, only get a small snapshot of people during the time of critical illness, during the hospitalization. The patient population that I’m trying to work with right now is a group of people who don’t have access to health care. And the front door to the health care system for so many of these patients that I see is our emergency room, which is a huge problem, because often it’s the wrong time, the wrong place, and the wrong thing for people who are — especially for people who are dying.
GRAMELSPACHER: So you already have an arterial line in here—and one pervial IV?
FEMALE DOCTOR 1: Two pervial IV’s and…
GRAMELSPACHER: So this is . . .this is actually a fairly young man, 66 years old who is diagnosed with lung back in June or July of ‘98. He collapsed at home and the family called an ambulance and they brought him by ambulance He was severely short of oxygen, and he got here and the doctors immediately put a endotrachial tube down his throat to give him more oxygen to help him breathe.
FEMALE DOCTOR 1: We were able to actually draw blood constantly and check his oxygen and carbon dioxide levels constantly.
MOYERS: This patient is terminally ill. He’s here because there was no plan for his continuous care and comfort as the disease progressed.
GRAMELSPACHER: This is the kind of situation you like to avoid if possible. This would be a patient perhaps who might benefit from a referral to hospice or some type of palliative care program to begin to address these issues early on instead of after the fact now.
GRAMELSPACHER: Tough place. Do you know anything about any kind of advanced directive? Have any discussions ever been had with him?
FEMALE DOCTOR 2: It looks lie not, um… The last discharge in November was—he left with a full code status and, uh, none of the notes since then do I see anything addressed and…
GRAMELSPACHER: He’s unconscious now and intubated… He has several, uh, catheters and lines in him. They’re getting ready to put another one in… He’s gonna be admitted to the intensive care unit. The physicians and nurses in the emergency room see their job as really to treat this acute problem first and then ask questions later. It would be nice to know if he wanted this.
MOYERS: On this day, another patient is in crisis.
GRAMELSPACHER: The patient was transferred from the nursing home to the hospital because he was acutely ill, admitted to the hospital and his service, had a respiratory arrest, intubated, and suddenly now you’re on this — this track. And the resident has been trying to work with the family through this delicate balancing act.
MOYERS: What Charles Gentry’s brother and niece must now decide is whether he would’ve wanted to continue life-supporting measures.
MARY CICARELLI: And the question is should we keep doing everything we’re doing? Is it the right thing to do for him? Is this what he still would have wanted as unresponsive as he is. The doctors are in pretty much agreement that we don’t think he’s going to get better at this point, we’ve done everything and he’s not getting better. So now we’re just holding him alive, and would he have wanted that? And I don’t know the answer to that, not having known him. And so that’s where I’m at the point of turning to you and answering any questions you have asking Dr. Gramelspacher what he thinks about this, and how he can help us sort through it, or maybe you’re at a decision point already. I don’t know.
PAT MARSHALL: What do you think?
GRAMELSPACHER: I think that this is a lot of sadness for you to have to deal with. You know, the question isn’t what do you want us to do, the question is what do you think he would want if he could stand up and maybe in the corner of the room look down there and see what’s going on. Because what you want is, you want him to get better. You want him to not have to go back to that nursing home.
J.C. GENTRY: Right.
GRAMELSPACHER: You want him to be able to go home, be able to go to the gambling boat and enjoy baseball and sports and the other things that he enjoyed and you wish this day had never had gotten here.
GENTRY: Right.
GRAMELSPACHER: But its here.
GENTRY: It’s here.
CICARELLI: Can you envision what he might have thought or is that too hard to do? Can you envision what he might have thought at this point if could tell us or is that too hard to do? Too hard to say out loud?
GENTRY: It’s pretty hard.
CICARELLI: Yes, it is.
GENTRY: I wouldn’t know what he’d want to say right now.
GRAMELSPACHER: I think it’s time to get out of the way. Stand next to you instead of across from you and be with you, be with him.
GENTRY Oh yeah.
GRAMELSPACHER: And then as painful as it is to let him go, to let him go.
GRAMELSPACHER: I’ve seen too many people die in our intensive care unit in ways that you or I would never want to die. And we’d never want any of our family members to die that way. And we would stand there at the foot of the bed shaking our heads, saying how can this happen.
MOYERS: Dr. Gramelspacher wants to build a system that will allow patients and families to receive palliative care before they reach a crisis.
GRAMELSPACHER: Hi there. How are you doing? Okay. Had dinner? Uh huh.
MOYERS: That means trying to bring palliative care into nursing homes.
GRAMELSPACHER: One of the goals that I have is to have a comprehensive program that can help navigate patients and families through a complex chaotic system during the time in their lives that they are disintegrating and their family’s disintegrating so it’s a real challenge.
MOYERS: It’s a difficult task bringing palliative care to nursing homes. Often, the patients cannot speak for themselves. And their caregivers misunderstand the nature of an illness like Alzheimer’s.
MEIER: Unfortunately in this country it has taken us a long time to recognize that Alzheimer’s Disease is like many others a terminal illness and the natural way to die with Alzheimer’s Disease is usually from infection. And what we’ve done because of our obsession with technology and our ability to treat things is turn the terminal stages of Alzheimer’s Disease into something we can quote “cure.” So someone with end-stage Alzheimer’s Disease who hasn’t communicated with anyone for years who gets pneumonia, gets IV antibiotics in the hospital and when they stop eating and drinking gets a feeding tube into their stomach. To us this is wrong.
MOYERS: To start changing care for the elderly, Mt. Sinai has connected its palliative care program with a nursing home – New York City’s Jewish Home and Hospital.
MARY WRIGHT: Hello, my baby.
ANNE LANE: Hi sugar. Hi mom. How you doing?
MOYERS: Inez Fort has late stage Alzheimer’s and has suffered three strokes. Her daughters cared for her at home for years – until it became too difficult.
LANE: She’s not here because we didn’t love her. She’s not here because we threw her away. She’s here out of love. We loved her enough to give in and let her come here for professional help.
CARTER: Hi.
WRIGHT: Hi.
CARTER: Good afternoon … we’re sorry, we really don’t want to disturb you.
WRIGHT: That’s okay.
CARTER: Hello, Ms. Fort.
WRIGHT: Hello, I’m alright.
MOYERS: Carter is a member of Mt. Sinai’s palliative care team who now works with patients at the nursing home.
CARTER: How’s you mom? Good afternoon, Ms. Fort. Good afternoon. We haven’t noticed that she’s had any physical discomfort. I don’t know what your opinion is. Sometimes family pick up signs that staff – do you think she’s uncomfortable?
WRIGHT: No.
CARTER: – in pain or – good, good.
WRIGHT: I don’t.
LANE: Well, when she get uncomfortable, she tries to- she will take her hand and move it.
CARTER: Cause you know she’s wearing a patch that’s helpful in giving medicine on a regular basis for pain. But in addition, if we think she’s having more pain than usual or any pain we call breakthrough pain, we have extra medication to give her. So it’s important for us to know if we don’t notice it, the family does.
WRIGHT: And I asked him to please would he give her something for pain because they wasn’t giving her anything.
WRIGHT: Mother? Mother? Open those pretty eyes. Here, come on. No, no, no, no. OK. Good.
MOYERS: They must decide what to do if Mrs. Fort stops taking food by mouth.
LANE: It’s a rough road anyway you look at it. Especially a person that you dearly and truly love. When my mother doesn’t eat, we suffer, we worry, we want her to eat.
WRIGHT: They wanted to put a feeding tube. I told them no. And two years ago they were measuring her and well, she stopped eating I said, but she is still not going to get no feeding tube. We will feed her. We come up here every day and feed her. She’s not getting it. I could not picture my mother with a feeding tube. God gave her a mouth.
CARTER: If, God forbid, your mother were to stop eating all together, would there be any concern about just letting nature taking its course? That we might make her as comfortable as possible.
MOYERS: Now, with the palliative care team in place, Dr. Carter wants to make sure the family’s wishes will be followed.
MEIER: You see in Alzheimer’s disease when the person loses the ability to eat and drink that’s the natural end last stage of the disease. Very often you’ll find Alzheimer’s patients pushing food away when people try to feed them. They don’t want it; that’s what we call aversive feeding behavior.
LANE: We’re not looking for her to get up and jitterbug out the door or something. But as long as she’s here I’m hoping that she just be comfortable and be pain free like she is now, she’s comfortable. That, that’s what I’m wishing for.
MEIER: When we take care of patients, we spend a lot of time supporting and working with the family about what when they look back after their loved one dies, what would they look back on as having given the most loving, supportive care to the patient. How do they envision that? And very often they’re able to articulate a dignified comfortable death among familiar people.
MORRISON: I’m going to give you the prescriptions and what we spoke about yesterday – you wrote them down, right, by chance?
JOYCE KERR: Yes.
MORRISON: Good.
JOYCE KERR: Everything’s…
MOYERS: Joyce Kerr, Morrison’s palliative care patient at Mt. Sinai, is about to leave the hospital — probably for the last time.
MORRISON: So that’s the medication part. I spoke to the hospice program today.
JOYCE KERR: Okay.
MORRISON: They know you’re going home today. They’re going to have somebody in to see you tomorrow.
JOYCE KERR: Okay. I don’t want to think about anything.
MORRISON: Good.
JOYCE KERR: I’m tired of organizing all of this.
MORRISON: You don’t have to organize.
JOYCE KERR: Okay.
MORRISON: She’s going to come as often as you think you need her.
JOYCE KERR: Okay.
MORRISON: Okay. We’re putting things in place, so that the only thing you have to worry about is being you.
JOYCE KERR: Maybe I’ll start writing my inspirational thoughts in these books, like I’m supposed to, except for when I went to the bathroom last. [Laughs] This is far more important to me now than any profound thoughts I might have on dying, but anyhow.
MORRISON: That’s often the way it is, by the way.
JOYCE KERR: Is it?
MORRISON: Yeah.
JOYCE KERR: This is my family. This is Tom, Nancy’s husband . . .you’ve heard about Dr. Morrison?
THOMAS AKBARI: Yes, I have.
JOYCE KERR: Have you met my husband?
MORRISON: Yeah.
JOYCE KERR: And my brother-in-law Bob, and my sister, Janet…
MORRISON: Yeah, we met the other day. You’re all set.
JOYCE KERR: I’m all set.
MORRISON: If she wants to come back, of course she can come back, but it’s her life now and she’s going to lead it. She’s going to direct us. She is very organized and she’s going to go home and be in charge, and so that’s where we go next.
WOMAN 1: Yes, are you covering Ms. Kerr? Okay hold on.
MORRISON: Hi, it’s Sean Morrison with Palliative Care, how are you? Good, she’s ready to go from my standpoint. Can I just write for her to discharge? Is that all right for you guys? Thanks a lot. Bye. Thanks.
JOYCE KERR: Where’s the one that had the stuff in it?
BILL KERR: The one right there by the phone?
JOYCE KERR: Yes.
BILL KERR: Right there.
JOYCE KERR: Yes, this is the one in here.
JOYCE KERR: You know, it’s no fun going home and knowing that there’s nothing that they can do, but you know that’s just the way it. I don’t exactly know what’s going to happen and that’s scary, but it is, it’s just not bad. I’ve never had this much attention and that’s gotta carry you somewhat. Just having everybody around, it’s great.
MOYERS: Joyce Kerr has stopped chemotherapy treatments. Her care is now focused on keeping her comfortable.
MORRISON: I saw Joyce all the way through her last cycle of chemotherapy. And to make the decision to stop chemotherapy was largely based on those conversations about who Joyce was. What was important to her… to go home to be with her garden, to have her family there.
JOYCE KERR: You people have been great, thank you.
WOMAN 1: Take care.
MOYERS: The transfer from hospital to home was not completely smooth. The next day, joyce is in pain. There has been a mix up about filling her prescriptions and she only has some of her medications on hand.
JOYCE KERR: I’ll be glad when, you know, the hospice gets here with the stuff, but I don’t – I don’t know what the problem was, but it’s like not having Advil when you need Advil and you’re taking – you know, something else. Okay.
MOYERS: Until the prescriptions are filled, she is dependent on an emergency rescue medication that she had brought from the hospital.
BILL KERR: Anything kicking in?
JOYCE KERR: No, I’m going to have to take some of this.
JOYCE KERR: This is Roxinol, which is MSIR, which is Morphine, an immediate reaction thing. I can take as much of this as I want, just as a booster.
BILL KERR: Hi. Come in.
JUDY BRAUN: Hi. I’m Judy.
BILL KERR: Hi, Judy. Bill Kerr.
BRAUN: We spoke before, I think.
BILL KERR: Yes. Right.
BRAUN: It’s nice to meet you.
KEYES: It’s nice to meet you, Mr. Kerr. I’m Cheryl Keyes from hospice and I’m the nurse.
BILL KERR: Hi. Come in. Do you have the medicine?
KEYES: The medicine?
BILL KERR: The medication.
BRAUN: You have prescriptions?
BILL KERR: Yes. Joyce —
BRAUN: We’ll get them filled for you.
BILL KERR: Okay, Joyce called in this morning.
KEYES: Okay, we don’t carry them on us.
BRAUN: Hello, I’m Judy.
JOYCE KERR: Hi Judy, nice to meet you.
BRAUN: Nice to meet you.
KEYES: I’m Cheryl Keyes.
JOYCE KERR: You’re…Cheryl. Now, which one is the nurse? Okay, you’re the nurse. Okay.
KEYES: Welcome home.
BRAUN: It must be good to be home.
JOYCE KERR: Yes, it is. It is. It – I don’t know for how long, but…
BILL KERR: It’s good to have her home.
JOYCE KERR: Well my comfort will be eased when I have this. I need these right now.
KEYES: Can I use your telephone?
JOYCE KERR: Yes.
KEYES: I’ll be glad to get them for you.
JOYCE KERR: Sure.
KEYES: Yes. May I speak to the pharmacist? This is Cheryl Keyes calling from the Center for Hospice Care. Thank you. She has the following medicines that she’s going to need today. She needs MS Cottin…
MORRISON: Joyce had a relatively complicated pain syndrome. She had many different causes for her pain and one particular medication always didn’t work.
JOYCE KERR: I just wish the pain would go away. I’m much better.
MORRISON: As important as talking and understanding the values are, it’s also important to have the scientific knowledge and the pain management skills. You can’t talk about what it’s like to die with somebody who can’t sit still because of pain or… so that good symptom management has to happen before the more important aspects of palliative care. And that was a struggle with Joyce.
JANET KERR BREEN: Do you like to take a tour of flowers?
JOYCE KERR: I’m stirring.
JANET KERR BREEN: Let’s take a tour of the flowers and then we’ll cook. These are flowers everyone brought you.
JOYCE KERR: From New York?
JANET KERR BREEN: Yes.
MOYERS: By Mother’s Day, Joyce is more comfortable and able to enjoy the time with her family.
JOYCE KERR: Oh they are beautiful.
JOYCE KERR: I’m in the process of convincing them that we’re really to the end here now, and that’s okay. I mean we joke about it. We have these dinners every weekend, which we call the Last Supper. [Laughs]
JANET KERR BREEN: Hi guys come on in. Hi Colin.
JOYCE KERR: You got flowers for Grandma? Oh thank you oh they’re lovely. Thank you very much. Who did I miss? Brian, come on over. How are you doing, sweetheart? Did you have fun at the hotel?
BRIAN KERR: Yeah.
BILL KERR: She’s been doing pretty well…a little bit foggier and a little bit less steady. The amazing thing is whenever she comes down and is on stage she seems to be able to rally.
JOYCE KERR: I’m going to watch the kids out here, yeah.
MOYERS: Joyce’s husband bill has been caring for her with the help of hospice, Dr. Morrison, and her family. Her son and daughters come regularly with their children….
BILL KERR: This next week will be more of a test. She hasn’t felt well for a while but she still was more mobile, didn’t have that shaking and that danger falling, where I want to be near her all the time that she’s not in bed, or at least sitting in a chair.
JOYCE: Do you want to go up by the maple tree there?
JANET KERR BREEN: Colin, grandma’s coming, okay? So be careful.
JOYCE KERR: Oh, I’m so helpful.
KRISTIN KERR: Jamie’s coming with you.
JANET KERR BREEN: When is your next morphine?
JOYCE KERR: Any time.
JANET KERR BREEN: I’ve loved this time with her. You know. I’ve really have. It’s been terrific. And I’ve loved the time with my brothers and sisters.
JOYCE KERR: You guys go over. [Laughter] Where’s the camera? I don’t know.
THOMAS AKBARI: One, two, three.
JANET KERR BREEN: Thank god she didn’t have a heart attack and drop dead one day because nothing will go unsaid and she is, as you’ve seen, very vocal about everything.
PRISCILLA MCALENEY: This seems to be something that really helps her. You know, I think it’s something that she works on all week you know, to get ready for it and be up for it.
NANCY KERR AKBARI: There’s some closure and to have the time to settle things up although it’s sad but nice to settle things up while she’s around.
JANET KERR BREEN: It’s amazing how quickly she’s changing. Which you know some of it obviously is the drugs but you know a lot of it is the other stuff going on. She just doesn’t want to know. She would like to go to sleep one night and not wake up and hopefully that will probably be what it will be. Because she’s just you can tell she’s sleeping more and more and more and more. And if she can just go to sleep someday hopefully with you know closing her eyes and everybody being there. That would be really nice for her.
JOYCE KERR: I’m taking these to heart I want you to know.
BILL KERR: A week ago she was, you know, almost pretty much on her own and now with all these drugs she’s taking, she’s more, much more dependent upon people.
JOYCE KERR: I just wish I felt better physically right now. I usually come down here and I feel pretty good but on all these medications I don’t feel as lively as I did last weekend. Nancy’s gonna take a month off supposedly, but I hate to see them do that. They have very busy jobs. You know it’s hard at the end but you know it’s a lot of care, I guess.
BILL KERR: The hard part’s knowing when the month should start.
JOYCE KERR: Yes.
DAVID KERR: Thanks Grandma.
CYNTHIA KERR: Thanks Grandma.
JOYCE KERR: Bye, bye Sweetheart. I’ll see you.
CYNTHIA KERR: Say bye, bye.
JOYCE KERR: Bye, bye Sweetheart.
MORRISON: It was very important for her that she have Mother’s Day with her family and after that she began to slip into a coma. Her last several days in her house she as her daughter said, her mom never did things easily. She experienced a lot of troublesome symptoms She had some agitation, she had some more pain and with the hospice that we worked with we quickly set up intravenous medication that would control her pain, that would control her agitation, her delirium…and she was comfortable.
MOYERS: About a week after Mother’s Day, Joyce is confined to her bed – not yet unconscious, but in and out of sleep.
MOYERS: You think she’s comfortable now?
NANCY KERR AKBARI: Today, she is. I think, I think it’s hard for her. I think she’s, you know, I think it’s hard.
MOYERS: Do you think she’s aware?
MOYERS: Nancy Kerr Akbari, a doctor and resident at Mt Sinai, has taken that time off from work to be home with her mother.
NANCY KERR AKBARI: Sometimes she’s very clear. You know, as you’re trying to get little bits of medicine in and she says, don’t do that anymore, it’s like, okay.
MOYERS: She knows she’s dying.
NANCY KERR AKBARI: Uh huh. And she’s you know, she said some really interesting things. When the nurse was there the other day and we were – we were trying to do something, she said, she said, I don’t want to feel like I’m not dying. She said, don’t make me feel like I’m not dying. Which I thought was really interesting. Like it was important and I think it must be hard to put yourself in that place and, you know, saying good bye to everyone and [crying] so I think she’s done that. And you know.
MOYERS: She’s ready.
NANCY KERR AKBARI: And she’s ready and now this is what she’s doing. Now she’s dying and she wants to experience and do that.
MOYERS: She didn’t want to be a burden on you all. She said that very clearly.
NANCY KERR AKBARI: She’s not. I know. She’s absolutely not. I mean, I mean this is you know, you sit there in the rocking chair next to her and think how many nights did she sit with me and, you know, so it’s just nice to be able to try and give some of that back.
MOYERS: Has this experience taught you something that you didn’t learn in medical school?
NANCY KERR AKBARI: Yeah, one of my biggest things that I always quote the studies of is, you know, artificial nutrition and hydration and you know, the dying process and how that’s not helpful. And with my mom, when things happened so suddenly – she took a turn for the worse, and I’m looking at her and, you know, looking at her vital signs and thinking she needs fluid. And, you know, so I talked it over with Dr. Morrison and we had decided just since things were – were rapidly declining that maybe it was something reversible and you know so we started some IV fluids on her. And then you know I look back and think, gosh, all those people that I convinced them not to start things would be laughing now to see me doing it on my own mother.
MOYERS: Today the family and Dr. Morrison will talk about stopping the life support measures.
NANCY KERR AKBARI: I guess I’m more convinced that she’s ready.
NANCY KERR AKBARI: Thank you so much.
MORRISON: My pleasure. Beautiful neighborhood. This is where you grew up? Who’s here, Nancy?
NANCY KERR AKBARI: Everyone – all the kids except for David.
MORRISON: Okay . . . It’s Dr. Morrison.
JOYCE KERR: Oh.
MORRISON: Yeah, I just came out to say hi. You all right? Can you wake up a little bit for me?
NANCY KERR AKBARI: That a girl. [Laughter] Good job, Mom. Here’s your glasses, Mom.
BILL KERR: I thought for a while that she wanted to go back to the hospital to die. But we find out through just little things she said – there was – she wanted to be back because she didn’t want to bother us. So having her home has been great.
MOYERS: I know it’s not easy to talk and I appreciate you’re doing it.
BILL KERR: I’m not unemotional about it…. Everything, the palliative care, the hospice, I mean, when they say they’re going to do something, they do something. You never get no for an answer, if something is needed.
MORRISON: What I wanted to do was a couple things. One is just to answer questions and then talk to you all about what to expect over the next day or week or so, and see where we go. Let’s start with the IV fluid, I look at it really as an intervention we started with a clear purpose which was to see if it would make her more awake. And I think it did for a little while. I’m not sure it’s doing it now. The other thing that Mrs. Kerr was always very clear to me was when it was time for her to die that we don’t – that we don’t prolong it. And certainly intravenous fluids will prolong it, but they won’t make her quality better. I think that it’s going to cause more discomfort than comfort, now and it’s one less bag to have at the bedside.
BILL KERR: If it worked, fine. If it didn’t work, stop.
NANCY KERR AKBARI: Right. We said we would.
MORRISON: Right. It’s still hard to do sometimes.
MCALENEY: Sometimes I don’t know if we should be working to get her more alert or – or just letting her – I mean you can, you know, get her to open her eyes, but I don’t know if that’s helping her or helping her mind or …
MORRISON: Everybody’s different. When she wakes up and is more alert with you, if she seems to enjoy that, do it. She may not respond, but I’m sure she hears you, so, you know, conversations that you wouldn’t want to have in front of her – don’t. Okay? Always believe that she’s hearing you. Normal things not to worry about which happen. Okay? Very normal things. The amount of urine she makes will start to drop off. Her breathing pattern will change. And first, what’s happening now is her breathing may start to get a little faster and shallower. Okay? And then it may start to get irregular, And then what sounds like gasps. That’s not air hunger. Okay? I want to be very, very clear. Okay? It’s not that she’s suffocating. That’s just normal. What morphine does and drugs like morphine, is it prevents the body from sensing that your chest is moving really quickly. From sensing that there’s not enough oxygen. So it’s really important to realize that, even though her breathing may get faster, it may get slower, or she might have long pauses, where for you or I holding our breath we’d be very uncomfortable, she’s not going to perceive that as being uncomfortable.
MCALENEY: She won’t be scared?
MORRISON: She won’t be scared. She won’t know what’s happening and she won’t be short of breath. The other sign, while I’m here, which we need to talk about is a gurgling sound that you might hear in the last day or so before death. What happens is when you start to lose the ability to swallow or to clear secretions in your mouth, there’s a very thin layer of fluid that builds up over the vocal chords and the tracheal, breathing pipe. And as air moves up and through that it sounds all the world like somebody could be suffocating or choking. It can be very distressing to listen to. It’s really important to realize that all that is is air moving through a thin layer of fluid. It’s not as if she’s suffocating, it’s not as if she’s choking. It’s just a really lousy, terrible noise which is made by something very simple. A couple of hard questions. Is she ready?
VARIOUS: Yes.
MORRISON: And you have everybody who said goodbye—has had a chance to say goodbye. Last practical thing. This is what happens when she dies. Don’t call an ambulance. Don’t call 911. Don’t panic. Okay. We’ve talked a little bit about, you know, what’s going to happen. She’ll probably take a last breath, a couple shallow breaths and that will be it. Okay. And after that there’s no rush. All you need to do is call the hospice. Okay? Call the hospice. Just let them know that she died. They’ll send a nurse.
BILL KERR: It’s just time.
MORRISON: It’s just time. Okay? There’s no right way to do this. There’s absolutely no right way. It’s really who you are and how you want to do it.
MCALENEY: . . . do it tomorrow. We just do it. Whatever.
BILL KERR: That’s from experience. As a family.
MORRISON: The most important part of my job is listening. Mrs. Kerr and I spent a lot of time talking about very hard issues so that when this time came, I knew who she was. And we could go through this in a way that she and her family would want to do it.
MOYERS: But how many doctors can take that time to take to get to know who the dying person is?
MORRISON: There is no question it takes time, but it doesn’t take as much time as many of my colleagues think it does.
MCALENEY: I think she had an easier time talking to you, you know, a stranger, we’re—she didn’t want to upset us, or talk to us about those types of things and she’s very open and willing to talk to you about it.
MORRISON: Do I get close to my patients? Yes. I mean, it’s hard not to, if you start opening up the doors to talking about what is one of the most meaningful experiences of life, which is dying, it’s hard not to get close to people.
MOYERS: What gives it that meaning?
MORRISON: The mystery. I think that gives it a tremendous amount of meaning. We have shut this out for most of the last 30, 40 years in medicine and this gives it meaning. You know families who are together to talk about what’s important to them. It’s one of the few times in life where people sit back and think about what their life has meant to them, what they would like to accomplish, what they would like to leave as their memories. And those are questions that I ask.
MOYERS: Later that night, after Dr. Morrison’s visit with the family, Joyce Kerr died.
BILL KERR: I don’t remember the exact time. It was in the early evening when Nancy became concerned because the breathing changed. And she said it appears that something is going to happen. You all better gather around. So we sat there. I would say it was probably maybe 8 or 9 o clock at that point and you could see Joyce was going downhill and I would say around in fact it was exactly 10 minutes after l0 her breathing was quite labored and all of a sudden she just put her hands across her chest and stopped breathing. And Nancy got out her stethoscope and listened and knew that was it.
REVEREND: This body we commit to the ground, earth to earth, ashes to ashes and dust to dust. Blessed are the dead who die in the Lord . . .
BILL KERR: We were all right there and it was very fortunate, very fortunate. Really wouldn’t have had it any other way if possible you know. Just nothing I could think of could have changed or should have been changed I should say.
WOMAN 2: Mom?
MOYERS: Her mother’s death has affected Nancy’s working life as a doctor at Mt. Sinai. She knew about palliative care before, but now it’s full meaning has come clear.
WOMAN 2: Mom? Why is she breathing like that?
DR. NANCY KERR AKBARI: We talked about that’s gonna happen is that she’s gonna probably start she’ll breath more quickly for a little while and then start to breath more slowly.
WOMAN: Mom?
NANCY KERR AKBARI: Let me get you a chair. Okay?
WOMAN 2: Okay.
NANCY KERR AKBARI: You start to learn what’s more important. You’re doing them some good by taking care of the details, but you can really do a lot more if you make sure that everyone knows the big picture and knows what’s going on.
NANCY KERR AKBARI: If she starts to look more uncomfortable let us know.
NANCY KERR AKBARI: New medical technology is great cause there’s pretty much always something that can be done and I know from my experiences that it’s really hard to know when to stop. And you know if someone’s going to come up to me and tell me to stop then obviously after the experiences I’ve gone through I’m definitely going to work with them on that.
NANCY KERR AKBARI: Alright, I’ll be back, okay?
WOMAN 2: Okay, thank you.
MORRISON: Because we had a palliative care program within a teaching hospital she had exposure to a different way of caring for dying patients.
NANCY KERR AKBARI: They wanted her to be getting oxygen.
FEMALE DOCTOR 3: But I think that she . . .
MOYERS: Can we do for dying in a hospital what you’ve done for dying at home?
MORRISON: We’re trying. We’re trying. It’s hard. It’s actually harder in the hos…you would think it’s easier in the hospital because I have the medications right there. I have nurses 24 hours a day. The family is not responsible for doing all the personal care. But, it’s hard sometimes in the hospitals for people to switch gears and to realize that it’s okay for people to die. It’s not a failure and that it’s as important to medically manage the pain and symptoms that go along with dying as it is to do coronary artery by-pass surgery. That it’s an integral part of being a doctor, being a nurse, being a health care professional.
MEIER: On behalf of all of us who work in the Palliative Care Program I want to welcome you to this service which is in the memory and in the honor of the patients that we’ve taken care of who have died. Many of you have asked us as we got to know you in the hospital how we can bear to do such sad work. It’s true that the work is sad. The work is often heartbreaking. But we take great comfort in trying to make this most important and difficult of times a little easier to bear. The word palliate comes from the Latin for the word cloak, to cover or to protect. The nurses, the doctors, the social workers, the clergy all of us here who work on the Palliative Care Service try to help people facing serious illness to get through the illness with as little distress as possible.
MEIER: Do you want a sleeping medicine at night so you sleep through the night? You don’t, so you’re okay the way it is?
MEIER: And when death is near to make sure that a comfortable and peaceful passage is assured.
MEIER: Well you’re still a very beautiful woman.
MEIER: I thick that we are also great students of life – for what we are privileged to see is great courage, faith, and truthfulness and great love. Because of what we see and learn, from our patients and from their families, our work and what we witness every day, makes us feel proud to be part of the human race.
ANNOUNCER: On Our Own Terms continues on the web. Explore the issues, share your stories and hear from others. Find resources for help at pbs.org.
ANNOUNCER: In our next episode, patients and caregivers struggle with issues of choice and control.
JIM WITCHER: What I’m talking about is my choice. This is what I want.
SUSIE WITCHER: He’s swore that when I have to feed him, he won’t want to live any longer.
CARLOS GOMEZ: Ricky?
ROSE TACKETT: He has a right to say I don’t want no more.
KITTY RAYL: I’m not sure what’s going to press that button and say it’s time.
ISABEL: Bye.
KITTY RAYL: Bye. But this is a good day, I’m feeling fine.
This transcript was entered on April 3, 2015.
