ANNOUNCER: Tonight on FRONTLINE: Americans 85 and older are now the fastest growing segment of the population.
ESTELLE STRONGIN, 94 Years Old: I remember being repulsed by wrinkles and gray hair, and now they're just a part of life.
ANNOUNCER: Medical advances have enabled us to live longer, but not always better.
DAVID MULLER, M.D., Dean of Medical Education, Mt. Sinai: Another bypass surgery, another transplant. Nobody's bothered to think about what the repercussions are of trying to keep people alive longer and longer with such a limited ability to function.
LEON KASS, M.D., Chmn. President's Council on Bioethics `02-`05: It's an economic as well as a human demand on strapped, middle-aged and middle-class families. They're still caring for their children when they're also caring for Mom and Dad.
ANNOUNCER: But this is really a story about confronting the inevitable—
MARY ANN DiBERARDINO, Daughter: I keep trying to fix things, even though my head says I can't. Your heart— your heart wants to fix everything.
ANNOUNCER: —and coming face to face with our own hopes and fears about living old.
CLARA SINGER, 99 Years Old: I like life. I like it. But that's not up to me. It's not up to me.
ESTELLE STRONGIN, 94 Years Old: I'm Estelle Strongin. I was born on May 30th, 1911, which if my arithmetic still serves me, makes me 94-and-a-half.
[on the phone] All right, so who else has it? Who else has it?
I'm what was once called a stock broker.
[on the phone] Buy 500 each.
Today we have the rather elegant title of Financial Adviser.
[on the phone] Buy 500 HOLX for 82836.
And I still— even though I'm 94, I still have ambitions, and one of them is to do the job well.
[on the phone] I know we're chasing it, but they missed it, so we're going to chase it.
I was never one of the people to be horrified as the decades passed, except I have to admit that 90 was a little intimidating. I thought 90 meant The End, and I'm a little surprised that it hasn't.
LAURE ANGE GAECKLE, 99 Years Old: I'm 99 years old. I'll be 100 in two-and-a-half months.
INTERVIEWER: How does that feel, to almost be 100?
LAURE GAECKLE: It's just the same as 99!
ROSE CHANES, 96 Years Old: Never, never, never did I think I'd live so long. I couldn't even think about ever living so long.
CLARA SINGER, 99 Years Old: I'm a little frightened. I don't know— I never knew anybody who was 100. Is there a change? Is there change? Yes.
LEON KASS, M.D., President's Council on Bioethics `02-`05: We're on the threshold of the first ever mass geriatric society. And it is in many respects, really, a wonderful time to be old because people are not only living longer but they're living healthier into their 70s, 80s, in some cases even into their 90s. That's the good news. The bad news is the price that many people are going to be paying for this extra decade of healthy longevity is up to another decade of anything but healthy longevity. In fact, more and more people are living long enough to suffer from the as yet incurable diseases of body and mind.
DAVID MULLER, M.D., Dean of Medical Education, Mt. Sinai: I think the biggest issue facing the population of patients is loss of function. You begin to learn that not everyone has cancer, not everyone has Alzheimer's or Parkinson's, but almost everyone loses function. And by "function" I mean it could be something as simple as slowly worsening vision or really bad arthritis in one knee that makes it harder to get around.
AUDREY CHUN, M.D., Dir. Coffey Geriatrics Practice, Mt. Sinai: People want to live longer, but they want to live longer in the self that they have at that moment. And so if there was a way that we could keep you in your 40-year-old body until you were 100 and then you dropped dead, that would be a major medical advance. But unfortunately, as time goes on, these chronic diseases take a toll on the body.
Dr. LEON KASS: I don't think that any of the lessons of gradual loss of one's bodily powers really are preparation for some of these long-term conditions of enfeeblement and frailty. One should just simply tell the truth. It's— no one wishes that for oneself or for one's loved ones. The question is, it's here. And if it's not going to go away, how can we still make something out of it?
Coffey Geriatric Clinic, Mt. Sinai Hospital, New York City
Dr. AUDREY CHUN: Over the next 30 years, the number of people over the age of 65 will actually double, to the point that they're about 20 percent of our population, about 70 million people. Years ago, people died of pneumonia and flu and tuberculosis, infectious diseases, and we've become much better at treating these sorts of things. And now people are dying of their chronic diseases, things like high blood pressure or hypertension, heart failure, stroke, diabetes. These are all things that require management over time.
JEFFREY FARBER, M.D., Geriatrician, Mt. Sinai: Now we're dealing with older folks who have multiple chronic illnesses but are still kind of able to maintain their status quo, but any little something's going to tip them over. You know, it's that frailty where anything happens on top of it, you expose all of the underlying disease and disorder that was kind of masked by the other systems that were compensating for it.
Dr. AUDREY CHUN: Our system is set up to really treat acute diseases. Our system is set up to treat with procedures. And it's not set up to treat chronic diseases and to take time to figure out what's going on. Oftentimes, you can't get to the heart of the problem until 15 minutes into your conversation, and with the way health care is today, you may only have 15 minutes for your entire visit.
MOSHE MICHAELOWICZ, Patient: I have terrible with the urine.
Dr. JEFFREY FARBER: You have terrible what?
MOSHE MICHAELOWICZ: With the urine.
Dr. JEFFREY FARBER: Yes. What's happening with the urine?
MOSHE MICHAELOWICZ: I don't know. I make wet.
Dr. JEFFREY FARBER: OK.
MOSHE MICHAELOWICZ: I no can hold.
Dr. JEFFREY FARBER: You can't hold it in.
MOSHE MICHAELOWICZ: No.
Dr. JEFFREY FARBER: How long has this been going on for?
MOSHE MICHAELOWICZ: For a while.
Dr. JEFFREY FARBER: Like a few months, or just a couple of weeks?
MOSHE MICHAELOWICZ: A few months.
Dr. JEFFREY FARBER: OK. Does it happen every day?
MOSHE MICHAELOWICZ: Yeah.
Dr. JEFFREY FARBER: Yeah. Let me close the door.
MOSHE MICHAELOWICZ: And I want this— you see, I forgot. You see, I forgot.
Dr. JEFFREY FARBER: That's OK. That's all right. Take your time. It'll come up. It'll come up. Don't worry.
The number of geriatricians right now that are in a training program for geriatrics, in a two-year program, the number that are in their second year, that started this year, is about 50. You know, so it's nothing. You know, it's really nothing. So one out of five people are going to be older adults, and there's not really anyone trained to care for them.
NARRATOR: With fewer doctors now available to care for the rising number of elderly, many worry we're on the verge of a national crisis in care.
Dr. DAVID MULLER, Dean of Medical Education, Mount Sinai: Nobody's bothered to think about what the repercussions are of trying to keep people alive longer and longer — another bypass surgery, another transplant — without anyone worrying about how do you get them physical therapy? Will they ever walk again? Can they swallow their food? You know, it's not a very thoughtful way, I think, of providing health care.
Medicine has changed, I think appropriately, in terms of the technology that's become available and the fact that we can diagnose people and we can treat them and we can cure them, in some instances. The problem, I think, is that the pendulum has swung too far, and so the focus over time became predominantly diagnose, treat, cure. Even when there's nothing — quote, unquote — "medical" to do, you still need to be there for someone.
NARRATOR: As more and more people are becoming too frail to leave their homes, many doctors are once again making house calls. David Muller, one of the founders of Mount Sinai's Visiting Doctors, provides medical care to a growing number of the city's homebound elderly.
Dr. DAVID MULLER: I'm going to write him some notes so I can at least say good morning.
HENRY JANOWITZ, Patient: [reading note] "My name is Dr. Muller."
NARRATOR: For the past three years, Henry Janowitz has been wheelchair-bound. A former physician, he is now nearly deaf and has severe arthritis.
HENRY JANOWITZ: OK.
Dr. DAVID MULLER: Yeah? How about your knees? Pain? Here.
HENRY JANOWITZ: Here.
Dr. DAVID MULLER: Here?
HENRY JANOWITZ: No.
Dr. DAVID MULLER: No. Only here.
Each of us, whether we're in the Baby Boomer generation or not, has parents, and we watch our parents get a little bit older. And if even if they're relatively healthy and functional, you sort of see the slowdown and you anticipate. You try to plan ahead for being able to be around and care for them. And at the same time, you've got a family of your own and kids and a job and career aspirations. And so it's an unavoidable part of life.
And I haven't figured it out for myself, either. As far as my parents are concerned, I'd like to believe that, you know, I'll be there and be available for them, whatever they need and whenever they need it, but I don't know if that's really going to be the case.
INTERVIEWER: What are their expectations of you, do you know? Have you had those conversations?
Dr. DAVID MULLER: We've had the beginnings of those conversations, probably mostly because of the work that I do. I think their expectations are very typical and very traditional: none, zero. You know, they don't have any expectations that they'll move in with us. They don't have any expectations that we'll have to do anything extra for them. They don't want to be a burden. They'd like to stay independent.
NARRATOR: Dr. Janowitz is a widower, and his daughters live too far away to be involved in his daily care, so he pays $150,000 a year for the 24-hour help that he now needs to stay home.
[www.pbs.org: Read more about the cost of care]
LILLIAN GLEASON, R.N., Visiting Nurse Service of New York: The level of home care has gone up because we have so many medical procedures now and interventions that we didn't have before. Often, there are, you know, really complex things going on that have to be done in the home. So it's become much more complex. It's not just taking blood pressure and filling up the medicine box.
LILLIAN GLEASON: How's she doing today?
AIDE: All right.
LILLIAN GLEASON: That's good. Hi, Mrs. Enoch. How're you doing?
MARGARET ENOCH, Patient: I'm doing OK.
LILLIAN GLEASON: I'm Lillian, the nurse.
MARGARET ENOCH: Yes.
LILLIAN GLEASON: I came to check your blood pressure and do your dressing on your leg.
MARGARET ENOCH: All right.
AIDE: OK. I've just got to lift your leg a little, Mrs. Enoch, OK?
LILLIAN GLEASON: Our goal is to make whatever time the person has left be the best and most comfortable it can be because a lot of these things have been going on for years and years and years and they're never going to go away. Everybody has the fantasy of dying, you know, by just going to sleep and everything— you know, not feeling anything and everything's great. You just don't wake up. But it doesn't always happen that way. Sometimes people live a long time with serious, serious problems.
NARRATOR: Nearly two years ago, Antero Pallaroso was sent home from the hospital with a tracheostomy and a feeding tube. But even with the help of two home aides paid for by Medicaid, his daughter, Carmen, still quit her job to care for him.
LILLIAN GLEASON: You have very good technique, just like a hospital— better than a hospital.
The care that she gives him is really expert care. I mean, she hasn't had medical training, but she's learned everything about his care, to the Nth degree. So she knows how to take care of all of the equipment that he has. She knows how to feed him. She knows how to take care of his skin, how to take care of his trachea.
But think about it. I mean, it's a one-to-one caregiver-patient relationship 24 hours a day, 7 days a week. You can't get that in any institution. He just never would have been taken care of that way.
Some people feel that their kids are their ace in the hole. They'll take care of them. It's not always the case. But I don't have kids, for instance. I really seriously have to think about what's going to happen to me when I get older. And it's not— it's kind of a scary question. I think we all want to postpone it. I know I do. I don't really want to think about it right now, but I'm faced with it every day because I see it in my work.
Dr. LEON KASS: America is still a country which believes that the people who should care for the elderly are members of their own family. But that is now an increasingly difficult task for families. People are having fewer children. Families are smaller, less stable, geographically spread out, and the time of caregiving has gone from months before death to years, and in some cases, up to and decade or more, where people simply are living longer in conditions that are deeply needy. One study, a very, very telling study, shows that only those people who have three or more daughters or daughters-in-law have a better than 50 percent chance of not finishing their life in a nursing home or an institution.
1st NURSING HOME RESIDENT: What people like us need is love.
2nd NURSING HOME RESIDENT: I wrote to the maharajah, and I printed it up in the page so they will see it out. You don't have to worry. I don't have to— they don't even know it's me. I just didn't give them my name. I gave them another name.
1st NURSING HOME RESIDENT: What I'm trying to say is—
LAURE ANGE GAECKLE, 99 Years Old: Even though I'm a nurse, I never imagined I would be in a nursing home as a patient. Came in with a fractured hip, and been here seven years now. No sense in crying over spilled milk. Just take things as they come.
INTERVIEWER: Are you frightened of what's ahead?
LAURE ANGE GAECKLE: No, I'm not afraid. I don't want to live forever. I hate to— I don't know. I hate to leave my daughter, that's all. She's 72 now, but she's doing all right.
NARRATOR: Nearly 60 percent of those who live past 85 will go into a nursing home, and if they stay longer than six months, the vast majority will never leave.
[www.pbs.org: More aging issues and statistics]
JEFFREY FARBER, M.D., Geriatrician, Mt. Sinai: One person I visit on a regular basis in the nursing home calls it, you know, just the "waiting room," and she views it as, you know, this is where we all come to wait to die. And you know, in some perspective, she's right. I mean, that's what happens, you know? Other folks— I've seen people, you know, who thrive there. You know, I've had patients that were at home and then went to a nursing home, and they're much better off. The socialization — you know, they're participating in groups, having all these people around for meals — is tremendous. And they live off of it and thrive from it. So it's not always, you know, a downturn for some people.
CLARA SINGER, 99 Years Old: Why did I leave my home? Because I was lonely. When I reached 95, 96, it was a little hard. So I had a friend here. So he said, "Come over, Clara. Come over." It was all right. He was on the 7th floor. When I came, I said, "Look, you're not alone here." They're not friends. They don't know how to be friends. But they're people. They're people. And I have my— I get beautiful magazines. I get U.S. News & World Report that for 50 years we have in our home. So I have the magazines. I have the newspapers. And they're people. They are people.
The hardest time is, I miss— I miss my old friends. And I miss my home. And I say, "Look, you can't have everything." So I try to be happy.
WILLIAM COCH, M.D., Family Physician: I don't know if growing old is easier here. In some ways, I think it's more difficult. It gets a lot harder, in some ways, to keep your independence here. So you're much more dependent on family. Giving up independence is the worst. It is what everybody fears. It's what I fear.
You have the cane in your left hand. And you move your cane forward and your right foot forward, and then your left foot.
NARRATOR: Dr. Bill Coch opened his practice in upstate New York over 30 years ago. He's one of the few family physicians left in the area, and he sees thousands of elderly patients every year.
More aging issues and statistics: It's the doctor. So where's Mother?
HUSBAND: She's in her— in her chair.
Dr. WILLIAM COCH: OK.
We still have lots of three-generation households, four-generation households. It's rare that people will give up and want to put someone in a nursing home at the first sign of trouble. Most people will go through a long period of trying to take care of them in their own home, or in the family home or even extended families.
Yeah, it's Dr. Coch. How are you? I'm happy to come out and see you here.
Having a family really drives everything. I think it really gives people a reason to be better. It's really what their life is about, often, at the end of life, when their career is gone and— it's what's important to them.
ROSEMARY HAAK: I'm trying to think and think and think, so that you won't forget it again. Do you hear me? Can't you do it? Can't you do it?
CHESTER HAAK: Do what?
ROSEMARY HAAK: What you were going to say. You were going to say, "Merry Christmas, Merry Christmas to you"—
NARRATOR: Chester and Rosemary Haak, married for 68 years, now share a room in a nursing home. Both in their 90s, he has advanced Parkinson's and she's been diagnosed with Alzheimer's.
ROSEMARY HAAK: All right for you. You never do the thing— the right thing right and the wrong thing wrong. Why do you do things like that?
CHESTER HAAK: I don't know.
ROSEMARY HAAK: Because you can't see?
CHESTER HAAK: She has changed in the last two-and-a-half years, I guess. She can't carry on a decent conversation. I try not to let it bother me, but I don't like it.
INTERVIEWER: Can you imagine not being in the same room with Mrs. Haak, or would you—
CHESTER HAAK: No, I can't imagine it. I can't imagine it. When we first had to do something, when they brought me in here, why, we didn't think anything of it. One bed was here, one bed was over here. We pushed them together. And it was cold and damp that night, it was a terrible night, but we made out all right.
ROSEMARY HAAK: He's different. He's different.
AIDE: Let's try to stand up, OK? Ready on the count of three. One, two, three. Put your hands on the walker, right there where we usually hold. Right here.
ROSEMARY HAAK: One, two three—
Dr. WILLIAM COCH: Let me just walk over to the bed.
NARRATOR: The Haaks came into the nursing home three years ago so that Mr. Haak could recover from a hospitalization, but because of his wife's worsening dementia, they were never able to leave.
MARY ANN DiBERARDINO, Daughter: We took Dad in, and Dr. Coch sat down and was very kind but very frank, and explained that they would not be able to go back home. I don't think anyone wants their parent or a loved one to have to be in an institution. No matter where it is, no matter how nice, no matter how great the staff is, it's still an institution.
And as a child, I always feel like I can make them just a tad bit more comfortable. I know their desires. I know their needs. They don't have to tell me. So I've worried about everything — even the linens, the pillows, the heat in the room, the view, the food — but most of all that I've let them down by having to make the decisions we've made.
With my mother, it's been a slow process. But in the last few months, for whatever reason, things have escalated, and it's difficult some days when I'm not sure if she doesn't eat because perhaps she's forgotten how to use her utensils. Or does she not know how to swallow? I keep trying to fix things, and even though my head says I can't, your heart— your heart wants to fix everything.
Even with my nursing background in caring for elderly and terminally ill, nothing has prepared me for taking on the role of caring for my mother.
[www.pbs.org: More on caring for aging parents]
Dr. WILLIAM COCH: Hi, Norma. You waiting for lunch? It's a little early to
wait for lunch.
NORMA, Nursing Home Resident: I'm not waiting for lunch.
Dr. WILLIAM COCH: You're just sitting here doing word puzzles.
When you're young, you want to live forever. You want to at least live to be old. But many people don't want to live forever when they're old. In fact, that's their fear.
I will tell patients that I think, you know, that it's time to stop curative treatments, whether they go into hospice or not, and just focus on function and comfort. Often, that's what a person needs, is somebody who knows them, who has an idea of who they are, of what their goals are, and all the other things that have impact on their illness, to tell them what to do, be that an individual or family, and they would give up a certain amount of years at the end to have a good death.
Hi, Wayne. I've got to turn the television off, if that's OK.
WAYNE ELLIOTT, Patient: Yeah, yeah.
Dr. WILLIAM COCH: So tell me how things are going.
WAYNE ELLIOTT: Not good.
Dr. WILLIAM COCH: Not good.
WAYNE ELLIOTT: No. I'm exhausted all the time. I don't feel really sick. Temperature, I haven't had any.
Dr. WILLIAM COCH: No temperature.
WAYNE ELLIOTT: No.
Dr. WILLIAM COCH: You've got quite a cough.
WAYNE ELLIOTT: Yeah. Yeah, it's— it's loose, but I don't really bring anything up.
Dr. WILLIAM COCH: You don't?
WAYNE ELLIOTT: No.
LOIS ELLIOTT, Wife: He takes the Oxycodone twice a day. And yesterday, I started the morphine.
After he was diagnosed with lung cancer — that was just a few months ago — Dr. Coch said, "I don't want to do anything invasive." And he said, "Wayne, I don't believe that you would come through a lot of these tests that have to be." And Wayne accepted that. And I did, too. I think that none of us want to see him suffer much more. He's been a very sick man. Really, for the last year, it's been quite bad. And he wanted to be home so badly and we wanted him home.
Dr. WILLIAM COCH: Do you have anything you want to talk with me about before I check you out?
WAYNE ELLIOTT: No. You said something about a year. I don't know whether, you know, I'll go a year or not.
Dr. WILLIAM COCH: You mean I told you you had a year?
WAYNE ELLIOTT: Yeah.
Dr. WILLIAM COCH: Yeah. Did we bet on that?
WAYNE ELLIOTT: I'm not going to bet with you anymore.
Dr. WILLIAM COCH: You sure?
WAYNE ELLIOTT: You never pay off.
Dr. WILLIAM COCH: Yeah, I know. Well, your time is limited, and how long it is, I don't know.
WAYNE ELLIOTT: No one knows.
Dr. WILLIAM COCH: No, but it could be short.
WAYNE ELLIOTT: Yeah. Oh, yeah.
Dr. WILLIAM COCH: I mean, it could be weeks or— it could be weeks. I mean, it could— you know, we don't know.
WAYNE ELLIOTT: Well—
Dr. WILLIAM COCH: But— well, let me check you here.
Are you holding up all right?
LOIS ELLIOTT: I get tired, but that's— you know, I expected I would.
So there's the morphine.
WAYNE ELLIOTT: It'll be kind of tough on Lois, probably. You know. But yeah, it's— it's kind of hard to think about it. You know, why think about it, really?
NARRATOR: Two weeks later, Wayne Elliott would die, as he wanted, at home.
JEFFREY FARBER, M.D., Geriatrician, Mt. Sinai: You know, most people say they want to die at home, but most people die in the hospital. I mean, that's not what happens. Every day you see someone in the hospital, you have to ask yourself, you know, "Why does this person still have to be in the hospital?" There's lots of problems with, you know, confusion, disorientation, falls, and infections, with medicines, with IVs, with tests, with all sorts of things.
And sometimes, you know, you order a test because it's easy, because it's there. But then you've kind of opened up Pandora's box, and now you've found something you weren't looking for. And oh, boy, now what am I going to do about it? Well, you do another test. And then you do another test. And then you say, "Well, in order to figure it out, I actually need to go stick a needle in your bone now and take out some stuff." And then, OK, well, and— you start getting into trouble.
GEORGIA DAYS, Patient: After, you know, I had that terrible surgery.
Dr. JEFFREY FARBER: OK, good. So you do remember the surgery.
GEORGIA DAYS: Oh, yeah. And I shouldn't have had that.
Dr. JEFFREY FARBER: You don't think so?
GEORGIA DAYS: No.
Dr. JEFFREY FARBER: Why not?
GEORGIA DAYS: People don't have cloth surgery. I call it cloth surgery.
Dr. JEFFREY FARBER: What's cloth surgery.
GEORGIA DAYS: Pulling clothes out of your nose and out of your ears, out of your throat and stuff like that, zig-zawing cloth through your body. I don't like that.
Dr. JEFFREY FARBER: Do you remember what the surgery was for?
NARRATOR: Georgia Days was in the early stages of dementia when doctors removed a cancerous tumor, but the hospitalization made her dementia worse and now Dr. Farber is concerned about her recovery.
Dr. JEFFREY FARBER: OK. So we took it out. That was a few weeks ago, but now it looks like you're having trouble really still eating and putting some weight back on.
GEORGIA DAYS: Because I haven't been eating.
Dr. JEFFREY FARBER: Yeah. Do you know about the procedure that we want to do tomorrow?
GEORGIA DAYS: No! And I ain't too tickled about being cut on again.
Dr. JEFFREY FARBER: I know. I know. That's what I wanted to talk with you about. This is a small incision. And they put a tube in from the outside and then we can give you all the medicines, all the nutrition, the food, the vitamins, the minerals, the water.
GEORGIA DAYS: I don't know. What did you say the name of it?
Dr. JEFFREY FARBER: Its called a feeding tube.
GEORGIA DAYS: Feeding tube.
Dr. JEFFREY FARBER: Right there. Right about there.
GEORGIA DAYS: And they're going to put a hole in me and put the tube in?
Dr. JEFFREY FARBER: Right there. A small hole, but yeah, a hole. Right there.
GEORGIA DAYS: Oh, boy.
Dr. JEFFREY FARBER: Decision-making is a big issue for older adults and deciding upon a course of treatment is a big ordeal. Someone who gets diagnosed with a cancer when they're older, you know, it's a real question of, "Well, wait. Do we want to do the standard of care, which is surgery and then chemo, or is that really not what's best in this case?" Are they really too sick and dying from other things and it wouldn't be in their best interest to even, you know, go through a surgery like that?
Dr. JEFFREY FARBER: [on the phone] Yeah, hi, Mrs. Fuller. It's Dr. Farber calling. I just came from seeing your mom, and you know, I talked with her about stuff, including the procedure, which is scheduled for tomorrow, OK? I know you wanted to know. It's scheduled for tomorrow—
NARRATOR: The feeding tube would help Georgia Days regain her strength, but the cancer had already spread, so she would be moved to hospice care.
DAVID MULLER, M.D., Dean of Medical Education, Mt. Sinai: When the choice needs to be made, whether it's the patient making it or the patient's family, the kinds of decisions they have to make sometimes are completely unexpected. I had a patient with severe, severe Parkinson's disease, and one of the manifestations of his Parkinson's was that he could no longer swallow. So I had this long conversation over the course of weeks with his family, and basically, what I tried to help them understand is his body can't sustain life anymore. He can't swallow food.
So if we choose not to feed him, he'll die from his Parkinson's disease. If we choose to put a feeding tube into him, he won't die now, we'll have to wait for a medical catastrophe. It'll have to be an enormous infected bedsore. It'll have to be a stroke. It'll have to be overwhelming urinary infection, aspiration pneumonia. It'll have to be some— it's what I try to term a "medical catastrophe" because we've actually caused it to happen. We've let the person live long enough that the only way for them to die, because we didn't let them die from their natural illness, is some medicalized catastrophe.
And some families accept that. It's very hard to do because they're letting someone die, and lots of families can't. They cannot accept that. When something happens that ends life, that's OK. But until that happens, they need to do everything they can to sustain someone.
[www.pbs.org: Deciding when enough is enough]
LUCIA PAUNESCU, Daughter: Who's ready to lose somebody from the family, especially their mother? I'm not ready. don't know. I know it will be one day, but—
NARRATOR: For the past year, Dr. Farber has been working with Lucia Paunescu to keep her mother, Maria, out of a hospital and at home. Now 96, Maria is slowly deteriorating from chronic heart and vascular disease.
Dr. JEFFREY FARBER: Just tell her I'm here. It's Dr. Farber. Hi. Good. You have a very nice smile. Will you tell her?
LUCIA PAUNESCU: She know she never recover. Few days ago, she was very, very, very sad, and she look at me after she had a lot of pain, and the pain calm down after the medication. And when I ask her, "What do you feel? You feel better?" She say, "Yes." And she look at me and she say, "You try to cure me, but you never can do that again." I give her everything that I have, but I don't know what to do. And that is the hardest part because I don't like her to suffer.
Dr. JEFFREY FARBER: How about when she moves the leg? It hurts, right? She's very limited. You know, she has really severe arthritis in a lot of her joints, including the hips. And at this point, she's getting contractures.
Her mother's getting sicker overall. And we've been spending a lot of time talking about what to do when her time comes and how, you know, it's very clear she doesn't want her to go to the hospital. She doesn't want someone to call 911. So she filled out one of these "Do Not Resuscitate" orders at home to put on the fridge. But it's very hard for her to kind of picture and accept the fact that— that she is so old and frail and, you know, not going to be around forever.
LEON KASS, M.D., President's Council on Bioethics `02-`05: The bright lines that used to guide us when death was swift, technology didn't get in the way— those lines have become blurred by lots of things. Loving families begin to wonder, "Is it love or is it cruelty to treat this pneumonia in my father, who is suffering from cancer and has begun to lose his appreciation of all of those things that made his life worth living?"
Lots of us now want to spare our children those kinds of burdens. One hears it said over and over again, "I do not want to be a burden to my loved ones." And people write living wills and make other kinds of arrangements precisely hoping to spare the burden not only of care but even of decision-making about what should be done with us when we get to be old and infirm and incapable of deciding for ourselves. But the fact of the matter is that it's really impossible to describe all of those circumstances that one is going to face. And for most of the decisions of long-term care, you can't write those things.
MARY ANN DiBERARDINO, Daughter: Every day, I meet a friend, an acquaintance, a relative who's caring for their parents and making these difficult decisions that no child wants to make. And every day there is a decision, even if it's a little decision like, "Well, do they need an antibiotic?" You know, my parents do have a living will and a health care proxy, but when push comes to shove, are you not going to fix that fractured hip? Are you not going to fix those fractured ribs? Are you going to allow your father to choke, or are you going to make sure that he doesn't have popcorn and things of that nature?
I never had anticipated being in this position nor having my parents in the situation they're in. Our daily struggle is to continue to try to assist them in having a purpose in life because there's no question that in many aspects, they've lost the quality of life.
CHESTER HAAK: We had everything all set here. We had drawn up wills, we set up trust funds for the kids. Everything was set. And then this happened. I'm trying to learn to walk, but it's hard without this wheelchair. And she and I both can't have wheelchairs because she can't run one and I can't run the other. You know, we can't run two wheelchairs with one person. So I don't know what to look forward to. I don't really look forward to anything. Old age is for the birds.
WILLIAM COCH, M.D., Family Physician: A lot of what I am, and I think a lot of people, is what we do. And if you can't do anything, then what are you? To me, being unable to drive a car, to make music, to think clearly, is just— I don't want to have anything to do with it. I mean, probably at least once a week, and sometimes every day, people say, you know, "If I ever get like that, take me out behind the barn because I don't want to live that way."
Dr. DAVID MULLER: Many doctors in their practice are confronted with situations where patients are really in desperate need. And they say, "Look. When this happens, I want to be very clear, I don't want you to prolong my life," or "I want you to make something available for me that will," you know, "help me to be more comfortable, end it when I want to," or even sometimes, you know, "Will you help me to do it when the time comes?"
Because of these experiences, I've had these discussions with my wife, too, about my own end. And she and I are at polar opposites in terms of what our expectations are. I mean, I would clearly want to be given that option. If I were terminally ill or I had a progressive illness, a degenerative progressive illness that was going to gradually take away all of my function, I would want to be able to opt out. I want that control. And I don't know whether I'd ever use it, but I definitely would want it. And to her, that's— it's just inconceivable that someone could think like that. Life is life.
ESTELLE STRONGIN, 94 Years Old: My son, who has power of attorney in case anything happens to me, asked me to sign a paper that would authorize termination in case of a hopeless-looking condition. And I said, "No, I'm not signing that." There are a lot of cases where doctors have said, "This patient has three months to live and they've lived 30 years." I don't think that medicine knows everything perfectly, and that while there's life, there's hope. And it's part of my general optimism, I guess, and confidence that if it were that hopeless, my heart would intervene and say, "the end." And I'm willing to let it go at that.
INTERVIEWER: Why do you think so many people are prepared to sign, though?
ESTELLE STRONGIN: Because they don't want to see their children suffer. And I said to them, "I don't care. Suffer!" [laughs]
INTERVIEWER: How long would you like to live, Mrs. Singer?
CLARA SINGER, 99 Years Old: What, honey?
INTERVIEWER: How long would you like to live?
CLARA SINGER: Never questioned. I never thought of it. I don't want to think of it. I like life. I like life. It's the sun, it's the air, it's the work, the books. I like it. I like it. But that's— it's not up to me. It's not up to me.
Dr. LEON KASS: It's, I think, simply not true that we can know in advance how we ourselves will feel about many of these things, once we find ourselves not 45 and fit but 75 and viewing life with a different lens. I'm trying to accept the coming limitations with a certain amount of grace. I have this perverse occupational interest to see whether, having thought about it all this time, I can age better rather than worse and be a kind of decent example to my children and to my grandchildren. It's not simply in my control. It's a time of life that interests me a lot.
NARRATOR: For the first time in history, those 85 and older are the fastest growing segment of the population. And within 25 years, there will be over 70 million elderly living in America.
Dr. LEON KASS: We haven't even begun to contemplate what this means socially, in terms of the meaning of having all these years stacked up at the end of life. It's a lot easier for the country to think about the economic aspects. We've not yet begun to face up to what this means in human terms,
[1911-1996 In memory of Estelle Strongin, grandmother of producer Miri Navasky who died of heart failure, at home]
· · ·
Airdate: Nov. 21, 2006
WRITTEN, PRODUCED & DIRECTED BY
Miri Navasky & Karen O'Connor
DIRECTOR OF PHOTOGRAPHY
Patricia Beilman, Jewish Home and Hospital
Dr. Jeremy Boal, Mt. Sinai Visiting Doctors Program
Theresa Burke, RN
Pete Gliatto, MD
Dorothy Harrison and Dolly Goff
Highland Healthcare Center
Jennifer Larmour, RN
Jones Memorial Hospital
Batya Lewton, Essie Schiller and Florence Greco
Ruth Mitchell, Visiting Nurse Service of New York
Dr. Brent Ridge, Mt. Sinai Coffey Geriatric Practice
Wellsville Manor Care Center
DIRECTOR OF BROADCAST
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OUT REACH MANAGER
Sandy St. Louis
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WEBSITE COORDINATING PRODUCER
DIRECTOR OF NEW MEDIA AND TECHNOLOGY
DIRECTOR OF BRAND STRATEGY
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Louis Wiley Jr.
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