Below is the complete transcript of the excellent SBS Frontline documentary, Living Old, that June mentioned under “Your Say” elsewhere on this website. I’ve decided to put it on the Diary page, although in reality it is a very long read, because of its total relevance to all of us….In America it obviously helps to be very rich at $150,000 per year for 24/7 full time care to remain in one’s own home. Perhaps this is a snap shot of Australian’s living and dying circumstances, people in the Western world holding similar life styles. Many children, now adults living thousands of miles away from their bed ridden, needy parents. The top part of the article is an abbreviated version of the second part of a keynote speech which is produced in its entirety. A clear thinking analytical study of what the future may hold for any or all of us.
“We’re on the threshold of the first-ever mass geriatric society,” says Dr. Leon Kass, chairman of the President’s Council on Bioethics from 2002 to 2005. “The bad news is that the price that many people are going to be paying for [an] extra decade of healthy longevity is up to another decade of anything but healthy longevity. … We’ve not yet begun to face up to what this means in human terms.”
Vast numbers of our elderly are living lives that neither they nor their families ever prepared for or imagined. Through the perspectives of the elderly, their families and the doctors and nurses who care for them, “Living Old” explores the modern realities of aging in both urban and rural America. The hour-long documentary takes viewers on an intimate and powerful journey that raises new and troubling concerns about what it really means to grow old.
For millions of Americans, living longer means coping with multiple chronic illnesses, increasing frailty and prolonged periods of dementia, which may last for years and sometimes even decades. Only one in 20 people over the age of 85 is still fully mobile, and roughly half will develop some form of dementia. “Everything started to go at 82 years,” says Rose Chanes, now 96 and in assisted living. “I don’t hear, I don’t see. … You’ve got to be crazy to call it a blessing to live like this. … I call it a curse.”
For the elderly and their families, the emotional toll is often severe. “With my mother, it’s been a slow process, but in the last few months, … things have escalated,” says Mary Ann DiBerardino, whose parents, married for 68 years and both in their 90s, now share a room in a nursing home. Her father has advanced Parkinson’s, and her mother has Alzheimer’s. “It’s difficult some days when I’m not sure if [my mother] doesn’t eat because perhaps she’s forgotten how to use her utensils,” says DiBerardino. “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 wants to fix everything. Even with my nursing background and caring for [the] elderly and terminally ill, nothing has prepared me for taking on the role of caring for my mother.”
In an attempt to lessen the burden on families and to ensure that their wishes are fulfilled, many elderly write advance directives, such as living wills, powers of attorney and do-not-resuscitate orders. “But the fact of the matter is, it’s really impossible to describe all of those circumstances that one is going to face,” says Dr. Kass. “[And] it’s 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.”
Decisions about life-prolonging treatments are also becoming increasingly complex. “My son … asked me to sign a paper that would authorize termination in case of [a] hopeless-looking condition,” says Estelle Strongin, a 94-year-old practicing stockbroker. “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.” When asked why so many of the elderly are signing such documents, Strongin responds that they sign because they do not want to see their children suffer. But, she adds with a laugh, “I said to them, ‘I don’t care—suffer.’”
As the nation ages, many believe that our health care system, with its focus on treatment and cure, is woefully ill-equipped to handle the new realities of long-term care. “Nobody’s bothered to think about what the repercussions are of trying to keep people alive longer and longer,” says Dr. David Muller, dean of medical education at Mount Sinai School of Medicine and co-founder of Visiting Doctors, a program that provides primary care to homebound elderly in New York City. “[It's] another bypass surgery, another transplant, … without anyone worrying about ‘Well, what’s next?’”
With families smaller and more dispersed than ever before, and more doctors choosing medical specialties over family medicine, many fear that the country is on the brink of a national crisis in care. “One out of five people are going to be older adults,” says Dr. Jeffrey Farber, a geriatrician at Mount Sinai, “and there’s not really anyone trained to care for them.”
A bioethicist, Dr. Leon Kass chaired (2002-2005) the President’s Council on Bioethics, which issued the landmark report, “Taking Care: Ethical Caregiving in Our Aging Society.” The study called attention to the critical problem of an increasingly elderly population, many of whose members need intensive, expensive, long-term care in a society with a dwindling number of available caregivers. In this interview, Dr. Kass talks about how our society has not yet faced up to this looming crisis, especially its human dimensions. This is the edited transcript of an interview conducted on March 7, 2006.
• Related Reading
• » “Longer Lives Reveal the Ties That Bind Us”
New York Times columnist David Brooks on the vital message to take away from the ‘05 report issued by the President’s Council on Bioethics
•
• Highlights
• » The new burden on families
• » “We no longer have any clear idea of the life cycle”
• » Does having caregivers who know and love us matter?
• » The untold sad truth
• » Changes needed in the health care system
Describe what’s happening with the new rising elderly population in the United States. (think Australian though!)
One way to put it would be to say that we’re on the threshold of the first-ever mass geriatric society. … But what’s really new is massive numbers of people are living not just into their 60s and 70s, but well into their 80s and 90s, so the absolute number of old people is increasing. The percentage of the population that is over 65 is growing by leaps and bounds. And the percentage of the fastest growing [part] of the population — 85 years and over — they are expected to triple or quadruple before midcentury.
We haven’t even begun to contemplate what this means socially, in terms of work and retirement, in terms of uses of leisure, in terms of the economics of it, in terms of the meaning of having all these years at the end of life stacked up after one has finished one’s productive work, in a world where there are fewer and fewer people to whom one is naturally and genealogically connected.
So we now will have in this mass geriatric society a very large number of people who are not just old, but who are “old-old,” not just chronologically, but in body and in mind, and they will need a massive amount of care precisely at a time when there are fewer and fewer people available to look after them.
Families are smaller, less stable, geographically spread out. Many people are strapped also caring for the young at the same time that they’re supposed to be caring for their elderly parents. There are insufficient numbers of geriatricians, not to speak of the people who really do most of the care — the nursing staff, the practical nurses and others who tend these people 24 hours a day. As the baby boomers enter their retirement, this problem is only going to become much worse.
The society as a whole has seen something of the economic crisis that faces Society Security and Medicare, [but] we’ve not yet begun to face up to what this means in human terms. …
If we are paying more attention to economic issues than moral issues, what are the issues that are being missed?
What’s really missing is the attempt to address what meaningful old age means. … Look, if 40 percent of the people are already dying after a protracted period of debility, that means every family has either in their direct experience a loved one who is now undergoing that or can look forward to it in the years ahead. People are surprised to discover how widespread the phenomenon is because it’s been a matter of shame and dealt with in private terms. I think the more we deny this problem, the more difficult it will be to face up to it and to try to find the human and social resources to not solve the problem — the problem can’t be simply solved — but to somehow live with it in a better rather than a worse way.
Why that 40 percent figure? What happens as you live longer and longer?
One of the great achievements over the last half century has been in medicine’s ability to do battle with the causes of acute life-threatening illnesses. We’re doing much better in dealing with heart disease and stroke and various other acute causes of death. What this means is that we are now left to suffer from those chronic illnesses that limit our mobility, that make us frail, that in many cases diminish our mental capacities of choice, judgment and self-management, so that more and more people are living long enough to suffer from the as-yet-incurable diseases of body and mind: Parkinson’s disease and Alzheimer’s disease; major diseases of the nervous system; arthritis; chronic congestive heart failure; chronic pulmonary disease.
If you look at not just the causes of death, but the patterns leading up to death — and I was really quite shocked to see the figures. The three most common trajectories toward the end of life are: a malignancy which will kill you. People are healthy, a diagnosis of a fatal malignancy is made, and over the course of a year to 18 months, they gradually fall off and they die. Not all malignancies are fatal, but if a malignancy is going to get you, it will get you in roughly a year to a year and a half.
Second major trajectory toward death is the failure of the major organ systems, heart and lung: congestive heart failure; chronic congestive pulmonary disease — usually emphysema, usually in people who have smoked [for] a long time. That is a course which dwindles really over a period of three to five years, punctuated by acute episodes which will take you into the hospital with some emergency. They give you antibiotics; they give you diuretics or digitalis; you bounce back, only to slide further down the scale.
“The end of life proves a truth that has been truth all of life, unwelcome as it might be: We’re not independent, solitary beings. We are interconnected from start to finish. We need other people, and we need also to be needed.”
Then the third pattern is the one [we] have described; namely, the pattern of enfeeblement, dwindling, dementia, incapacity, in which there’s just the kind of steady downhill course. At a certain point, people can no longer take care of themselves, and many of them now wind up in institutions for nursing care.
The shocking thing is, these three patterns are 80 percent of all deaths in the United States, and they distribute themselves 20 percent through cancer — pass on within a year and a half; 20 percent through failure of the major organ systems — heart and lung; 40 percent of all deaths now preceded by this long period of just frailty — frailty of body, frailty of mind. It’s gradual. At the beginning, people still manage to cope, but during the last two to three years, many of these people don’t know their relatives, don’t know what’s happening to them, can’t care for themselves, and they are really in need of constant care and loving attention.
Is our health care system built for the realities of people living longer?
The really triumphant growth of modern medicine has been built primarily around the killers: heart disease, infectious disease, lethal nutritional deficiencies, stroke, cancer. Great, great strides in these diseases. The reimbursement system pays wonderfully for acute medicine, for emergency medicine. We have not yet caught up, either in terms of medical training or in terms of risk management or in terms of reimbursement schemes, with the fact that what we now have is a culture in which the major medical concerns are chronic illness and the needs for long-term care.
People know that this is here, but the system has yet to adjust properly. It will be the great challenge of medical education, of health care management systems and reimbursement systems for the decades ahead.
And what are the consequences of this new reality for individuals, families and all of us?
America is still a country which says that the responsibility for caring for the elderly who can’t care for themselves is the family, but that is now an increasingly difficult task for families. People are having fewer children. The families are themselves marrying later and having children later. They’re still caring for their adolescent young when they’re also supposed to be caring for Mom and Dad, who can no longer care for themselves.
It’s an economic as well as a human demand on strapped, middle-aged and middle-class families. This is very, very demanding care and very needy care. People want to do a good job at it, but they have very, very limited support from the community or from other members of the family. One 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. For all of our talk about gender equity, it’s still the daughters and daughters-in-law who give care. And it’s a hard job for one daughter or one daughter-in-law, especially if there are small children to be cared for.
People talk about the smaller number of workers who are going to have to provide economically for the larger number of retirees and people on Medicare. We don’t pay enough attention to the actual smaller number of available human, connected caregivers. The task is going to be taken up increasingly by people who don’t know the patient, who have not shared their life, and [who are] in larger and, alas, impersonal institutions, unless we begin to pay some attention toward making these institutions smaller, more humane, [more closely] connected to people’s roots and places where they’ve lived.
Even with daughters, as we live longer, the care itself can go on for years.
Right. It’s not a new story that the young have cared for their elders. Widows often lived with a married daughter, and the children provided care when the elders got sick and often died at home. Now, thanks to our ability to deal with the acute causes of death, even as they affect people who are in this period of dwindling, this means that the time of caregiving has gone from months before death to years and, in some cases, up to a decade or more. People are living longer in conditions that are deeply needy, and even the most loving family finds this a difficult task.
They will find it also an increasingly difficult task when it seems as if all the medical interventions that are technically possible seem also to be morally obligatory. Loving families begin to wonder: Is it really love or is it cruelty to provide a new intervention for someone who has lost bladder and bowel control and who seems no longer to enjoy life, and who’s [dis]engaged, who has fits of rage and doesn’t understand why I’m trying to help him? If that’s the direction we’re going, the moral ethic, not just within families but in the culture as a whole, of regarding human beings as equal in dignity regardless of their disability, this ethic, which has been our pride — pride of the medical profession, pride of the American culture — this ethic will come under challenge.
It would be a very dangerous thing in our culture, in medicine and in families if people began to entertain the category “better off dead,” a life not worth living. Doctors will have a difficult time wholeheartedly caring for the life the patient still has if removing them from life comes to be seen as a viable therapeutic option, and families cannot embrace wholeheartedly giving loving care to the person in this [category] — no matter how reduced the condition — if they are constantly thinking, “This is not a life,” or, “This person really is better off dead.”
At the same time, we have to learn how to stand aside when the time comes, hard as it is to know when that is. Traditional medical ethic, which has embraced life, has also taught us that not all interventions are morally obligatory. When treatments are either useless or unduly burdensome to patients, those treatments may be foregone or withdrawn. That traditional medical ethic has served us well: no deliberate killing, but allowing to die when the intervention is in fact burdensome to the patient. The question is whether we can sustain that in the face of this new social crisis. If we can’t sustain it, there are potentially very dangerous things waiting in the wings.
And what about the larger human context that we haven’t grappled with in talking about aging and death?
I think the most difficult and important cultural shortcoming that has been one of the byproducts of our great success in extending life is we no longer have any clear idea of life cycle. The medievals had an understanding or a picture of the life cycle, each stage equally close and dear to God. They represented the life cycle in a kind of circular, with God in the center and the ages of man around the circle, all equally distant from the center. The early moderns had a kind of picture of a life cycle of rise and fall, from childhood, adolescence, full maturity in your powers, governing and gradually declining, but still in a respectable old age, nevertheless still connected into the community from which you’ve come.
We have built a kind of culture based upon individual achievement and success, geographical mobility, smaller families, looser connections. I guess if you were to draw a[n] American picture of old age, it’s a kind of career ladder that goes up like this, and then at a certain point the next scene is a fellow unshaven, in short pants, playing shuffleboard, and with no connection at all to the life lived hitherto.
What this means is we don’t somehow think in advance about old age as a part of life for which we have to plan and which we want to somehow integrate into our vision of the whole. We do not think of our elders as elders, as people who we want to relate to in a special way, so that the culture as a whole has not somehow thought about what old age is for, how we should stand to it, what special privileges it should have. Although old-timers remain chair of congressional committees for long periods of time, the culture as a whole does not generally look up to the elderly as founts of wisdom. They are disposable, replaceable, etc.
That means that when people get to be old, it’s much less clear what they’re about, and it’s much less clear what claims or expectations they can rightly have on the larger community, on the people who are their descendants. We make the best of it: In their avocations and amusements, many of them volunteer; they keep up family relations where they can. But they live in a world that’s increasingly dominated only by their contemporaries. They’re not somehow integrated into the larger society. They watch their contemporaries die or become disabled, and the world has passed them by, and we have allowed them, as it were, to disappear from our ken.
What difference does it make to be cared for by someone who loves us?
The question is, what kind of people provide the best care? And does it matter if our caregivers know us and love us? Other things being equal — and they’re not always equal — I think it matters a great deal that the life that is being cared for is known to be continuous with the life that one led before, and that the people who care for us fit this part of life into a long, lifelong relationship.
It’s true with a family doctor who is not meeting this person for the first time when he or she shows up in the nursing home or in the emergency room, but has known this person through the childbearing years and through their prime, and has guided them through this period of decline, and can say with confidence, “I will stand with you now as I’ve stood with you before.”
That is also, it seems to me, what family members at their best are able to do, not because they have some kind of professional contract, but because it’s somehow tacit in the understanding — and really, in good families, it’s just what families do. This is what life has brought us. The necessities of life are an occasion in which we show our love, and the people whom we care for are that much better cared for because we know them, have known them of old, and know them still in some way to be ours.
It’s true that if there’s bad family history, those things are done with resentment. Even in the best families, people get tired. One can’t somehow expect people to be saints 24 hours a day, every day of the week. And I have seen some professional caregivers, some professional nurses especially, who are so giving and so loving and so attentive that it would be hard to imagine family members doing it better, even if they’ve simply been summoned in a time of crisis. They’re not patronizing and condescending, and they don’t really treat the elderly as if they really are children in diapers, but they treat them with dignity and with respect. It’s sometimes hard for family members to continue to do that.
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.” 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.
I understand that temptation. It’s partly a matter of pride. One doesn’t want to be seen by one’s children and one’s grandchildren in one’s infirmity and in one’s nakedness. One doesn’t want to deflect them from their own work and from the care of their own. On the other hand, this is part of life, and I want my children to teach their children what it means to shoulder these responsibilities and to teach the interconnectedness of the generations.
Can you talk about the blurred lines between life and death? There are so many different ways that you can think about each situation, even among family members.
The bright lines that used to guide us when death was swift, happened at home, technology didn’t get in the way, those lines have become blurred by lots of things. If you ask as an intellectual question — Is this person in the bed with advanced Alzheimer’s disease still my father, still the same person I’ve known all my life? — the answer has to be both yes and no. I mean, it’s certainly my father and not yours. The person that I embrace and hug when I say goodbye is still the same person in some ways; it’s the same arms that have been put around the same arms for my entire life. And yet the nature of the relationship is altered. In some respects, it’s not the same person who’s at home. Those of us who make a living with our minds or who think human life consists primarily in the accomplishments you can put on a curriculum vitae are inclined to be puzzled at these assertions of raw human connectedness, which treat the presence of a living human body, continuous with the body we’ve known all our life, as something still sacred and valuable.
I may have told you this story. I was present at a very special occasion. It was a Valentine’s Day celebratory dinner in which an African American musician was invited to play. He was a composer. He got up, and he said to this august audience: “Valentine’s Day has always been a very special day to me. It’s my mother’s birthday. My mother is 85 years old. She’s in a nursing home in North Carolina. Sometimes when I come to visit her, she recognizes me; sometimes she doesn’t. But my mother is alive.”
Listening to this story, I got gooseflesh. There’s not a member of the faculty in my own university who would say such a thing, spontaneously, who would spontaneously somehow feel the exhilaration that this life from which we sprang and is still here connects us somehow to our past, is still an object of affection and of love, and whose life is somehow still to be celebrated in its diminution.
Now, I don’t want to romanticize that or sentimentalize. It’s very difficult to go into a nursing home and to see your loved ones in a reduced state. One walks out depressed because one knows that they don’t want for themselves to be in this condition. On the other hand, the surprising thing is to discover how many people’s pleasures in life change, how time teaches people new forms of relation and enjoyment, how people can stop trying to save the world and learn to savor it a little bit, and how [sometimes] doing the simple chores for somebody has a kind of meaning that one never imagined it would.
If someone is in a permanent vegetative state, it’s a different matter. You don’t know whether there’s anybody home, although if I’m in the room with such a person, I speak to them as if they’re still there, just in case, just in case there’s an inner life there which can hear but cannot somehow make manifest the relation. There are people who have been in frozen syndromes, who are frozen in there; they can hear everything, and you can’t know whether they’re in there.
But short of permanent vegetative state, one can communicate with people, even if only by holding of a hand, by playing some music, by doing things that produce a smile or a nod and keeping that human connectedness alive. It may not be something to write about in The New York Times, but it is meaningful connection, and I think the people who know this, and who know it in their bones and who practice it, are in touch with something that the rest of us can learn something from.
In our culture, do the people who know that feel supported in that view?
I’m not sure which way the culture goes. I suspect it’s not going in their direction, at least for the time being. We hear more and more about the high costs of care for people in the last six months of life, as if it were surprising that if you could in fact cure all the acute illnesses, that you would be left with anything but people in their last six months of life needing most of the medical care that’s to be provided.
When the baby boomers cross the threshold of old age, that’s when we’re really going to have a national debate about it. The baby boomers are not famous for letting their interests be bypassed, and if the elderly are going to be getting a fair shake in the culture, it will be the baby boomers that see to it that they are going to be looked after — though having produced fewer children than the rest of us, it’s not clear who’s going to look after them. That’s a big question.
But to come back to the business about whether caregivers who care wholeheartedly and without qualification for people, even in their reduced conditions, whether they are supported by the culture as a whole, I would say we don’t support them economically. These are low-paying jobs that are not highly honored — though when the wealthy need such care for members of their family, they find them and they’ll bring them from the Philippines if necessary, where the culture of caregiving, by the way, is spectacular. There are other foreign countries where people still know how to do this as a cultural matter.
The more you continue to think that you’re going to do away with this problem, either by medical progress or by the doctrine of healthy aging, the less likely we are, in fact, to honor the need for that kind of caregiving; the less we’re willing to pay for it; the less we’re willing to respect it. We certainly are not training the nursing profession primarily for this right now. In fact, we have shortages in the profession.
The religious-based communities do it better. That’s partly because there is still this teaching of love of neighbor and compassionate care. The hospice movement also teaches it quite well, on the whole. But those are sort of against the stream of technological progress and achievements for your résumé as being somehow the measure of what’s honorable in the community.
What are your thoughts concerning the progressive frailty of older people and coming to an acceptance of things that one can’t do?
If you’re thoughtful about these things, life teaches you those lessons very early. The soul is still eager to slide into second base, but it’s been 30 years since I was able. Certain activities have had to be surrendered.
But it’s an old, old story that nature tries to teach us, gently rolling us down this imperceptible slope, preparing us for a time that we’re going to lose it all. It’s not pleasant music to face. But we’ve been helped in denying that long-term lesson by these great gifts of medicine and by the prosperity of modern life, which enables us to work around these infirmities. If you have trouble walking, there are lots of four-wheeled ways to move you about, and it’s less of an impediment than it would have been for someone who simply had to lug groceries for a mile on a daily basis.
… [But] I don’t think that any of the lessons of gradual loss of one’s bodily powers or the kind of early forgetfulness really are preparation for some of these long-term conditions of enfeeblement and frailty. It’s just sad. One should just simply tell the truth: No one wishes that for oneself or for one’s loved ones. The question is, it’s here; if it’s not going to go away, how can we still make something out of it?
What are your thoughts concerning preparing advance directives, living wills?
Advance directives are a very popular topic. … Lots of people, fearing that when their time comes, technology will get in the way and they will be subjected to unwelcome lifesaving interventions, or some people who are afraid that they will be denied lifesaving interventions feel the need to write an advance [directive], sometimes called a living will, which tries to specify years in advance, with greater or lesser precision, what you would want done in case you become incapacitated and can’t speak for yourself.
It’s become now sort of conventional wisdom that everybody should have one. … And it looks like a good idea. It extends our competence into a time of life when we might be less than competent. It gives us something of a say about how we want to be treated toward the end of our life. It requires us to think in advance rather than to simply deny this kind of future.
But the fact of the matter is that very few people have living wills, notwithstanding the intense campaign to produce them. Those that are written are often very vague. And then they’re not vague; they pretend to be able to describe in great detail all of the circumstances where decisions would be needed, … when in fact it’s really impossible to describe with the right kind of precision all of those circumstances that one is going to face. And moreover — and this is, I think, a deeper problem — it’s 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.
Also, there are studies to show that living wills are, in a way, not used when the time comes. In one very remarkable study, the presence or absence of a living will didn’t make any difference to the decisions that are in fact taken if they can be taken by loved ones who actually know the patient.
There’s another kind of an advance directive, not the living will, which tries to set out instructions, but is called a proxy directive, in which people give power of attorney for health care decisions to a trusted member of the family or a friend, the person you would like to speak on your behalf and to care for you when you can no longer care for yourself or speak up for yourself. That we endorse very wholeheartedly.
That particular measure doesn’t pretend that when old age comes, we’re going to be independent and still dictating from years past how we wish to be treated. That acknowledges our need for other people and arranges in advance which of our people who are dear to us will serve as our proxies.
The end of life proves a truth that has been truth all of life, unwelcome as it might be to face: We’re not independent, solitary beings. We are interconnected from start to finish. We need other people, and we need also to be needed. And this kind of legal and autonomy-based solution not only doesn’t work; I think it teaches the wrong lesson.
Living wills, if they’re useful at all, are useful for those cases in extremis, when a hard decision [is required] that says, “I do not want to be resuscitated,” or “I do not want to have organ replacement,” or “If I get cancer and I’m demented, I don’t even want antibiotics.” Those things you can sort of write, even though you’re not absolutely sure what you’re going to feel like in those circumstances. But for most of the decisions of long-term care, you can’t write those things. Those are not the sexy, big things that make the headlines. Those are the banal, absolutely crucial, everyday things of everyday life.
For family members, when will anyone know when enough is enough?
The real anguish for people who have been caring for debilitated elderly a long time, in the age of miracle modern medicine, is this: You never want to say, “I wish he were dead.” At the same time, you don’t want to be complicit in what looks to you increasingly as if you are putting your father or your mother on the rack of a miserable and prolonged existence. You don’t want yourself to be somehow getting in the way of any kind of graceful exit at a timely place. So it becomes harder and harder to know when it’s time.
But there are people who somehow have the feeling — when they’re still in their powers — they have their feeling when the time is come, and without taking poison or doing assisted suicide, they surrender in some way. This doesn’t happen in all cases, but one hears enough about it to know that there are people who still can feel that the time has come, and they let go. There are other stories about people who wait for a spouse to give permission to die, who want, in a way, to be eased out, but who feel that to go will be to betray their spouse of 50 years, and they need some kind of gesture: “It’s OK, my dear. We will meet in the by-and-by.”
The difficulty comes when the person is no longer in a position to have some kind of hand in the end of his or her own life, and the task falls to those of us who have to decide: Well, is it pneumonia one more time, or shall we say, “Mother, you don’t have to go to the hospital this time if you don’t want to”? This becomes exceedingly difficult if every technological intervention which is not unduly burdensome becomes treated as morally obligatory.
I think it’s terribly important that we try, in this morass, to find some guidance that doesn’t require us to say “better off dead” or “unworthy life — off the stage,” and yet begin to get a feel for when the time is right, and we say in the name of the loved one, of the worthiness of the very life here being treated: “This is enough. Go to your maker with our blessings.”
[What are some of the changes that need to be made in the health care system?]
One of the really large and worrisome pieces of the problem of long-term care is the lack of physicians who can provide continuous and comprehensive care for the elderly and who [have known] them for some time. We need very much to encourage the development of geriatric physicians and nurses who will be there for the longer haul. One should not romanticize. This is very, very difficult and demanding work, and you do not have the satisfactions of pediatricians, that their patients are going up and up and ever higher and ever better. These are people who are going down, medicine or no medicine. You are somehow presiding — one hopes compassionately and gracefully — over the end of a life, keeping company with it, doing what one can.
But … we can begin to change the incentives such that we could get better long-term care from the medical profession. The reimbursement schemes, which are now tied to acute-patient visits, could be changed so that people would be compensated if and only if, in fact, they gave continuous care for the same patients over a longer period [of time]. There are programs that are experimenting with this.
We could learn something from the hospice movement, which is admittedly only an end-of-life system, but they have somehow learned how to keep company with the dying without thinking that removing them from life is somehow their mission. They have learned what it means to say, “The time has come,” and yet to be humanly present, up close and intimate.
There are some worrisome things, however. We now have, as a routine matter in hospitals, do-not-resuscitate orders written into the charts. You’re required now by law, when you enter a hospital, to fill out these kinds of forms. That’s a way of expressing our preferences not to have our lives unduly extended should a sudden heart attack fall upon us. The net effect of it is, however, if you write a do-not-resuscitate order in the chart, the interns and residents say second-class patient, not one to be done everything for, not only in terms of the heroic measures, but that’s a person who’s on his way out; we’ll cut corners a little bit. … Psychologically, people begin to cut corners.
So this, too, is tricky. You want a profession that knows the patients; that is, gives continuous and long-term care, that’s on the one hand willing to accept the limitations of such a life, but is not going to do it in a bureaucratic and procedural way.
The good doctors will let the patient know: “Whatever happens, I’m here for the long haul. I’ve been here before. I will be at your side. I will get you through this, come what may.” It’s not a crucial part of the training of young house officers. They learn it, if they learn it at all, from the old-time physicians who are their mentors and role models. I don’t know whether it’s being taught sufficiently. I doubt it.
The doctors who know how to keep company with the dying are harder and harder to find. The culture is, after all, primarily in the business of rescue. We still basically think, and the culture generally teaches, that today’s death is a failure of today’s medicine, curable by tomorrow’s. It’s very, very difficult to acquire just the right sense that leads you to understand that if you stick around long enough, you’re going to lose all your patients, unless they lose you first.
That, too, is part of physicianship. It’s not a technical matter; it’s a human matter that comes from somehow understanding again the trajectory of the life cycle and what it means to be mortal
You said we don’t tell the truth, and it’s sad. What are we not saying about living to 85 and older?
There’s good news and bad news. The bad news should not be told by itself, but neither should it be neglected. The good news is that old age, healthy old age, has been democratized thanks to modern medicine, sanitation, better health habits and the like. People are living healthier, longer en masse than ever before.
The bad news is that in exchange for an extra decade of healthy old age, maybe half of us can look forward to another decade after that of anything but healthy old age, of a time of bodily frailty, increasing incapacity, often growing dementia, inability to care for ourselves, and finishing up being bedridden and unable to look after ourselves at all; that this is, at least for the time being, the hidden cost of our great success in the preservation of life. Maybe future medical developments will conquer some of these diseases. We hope so.
But we should not pretend to ourselves that old age, for many people, is [not] going to be smelly and mean, and it is [not] going to be a fate that we don’t wish for ourselves, for those we love. But it also means a time of life in which we, their loved ones and caregivers, are going to be summoned to stand by, to care for the life they still have and not to abandon them. That will be our challenge. Our society of the future will be tested at least as much by our ability to care for those who need our care, no matter how reduced they are, as by our ability technologically to push back the frontiers of medicine and to conquer yet more diseases.
Have your own views of your own aging changed?
For whatever reasons, I have liked old people from childhood. I liked being around them. I loved listening to their stories. They had seen firsthand a world that was gone, and they were my connection to that world. I’ve spent a lot of my professional life, off and on, thinking about the subject of mortality, the care of the dying, questions of the definition of death, aging and the like. And I’ve tried, I think very hard, to think about family interconnectedness, the meaning of being a link in the generations, as well as what it would mean to try to have a trajectory of a life, and not just to be on a train going God knows where; to think about a shape of a life and to — you can’t plan for it, but somehow to enjoy things in their season.
I also think, perhaps too brazenly, that mortality as such was good for us — I’ve written on that subject when I was in my 40s — that it’s the recognition that we are finite and frail that is the ground of treasuring the things that life has to offer, to make the most of our time, to avoid boredom, to appreciate beauty, to spend our time worthily, to love well; that knowing that we don’t have infinite time and that we go around only once really is, I think, an absolutely necessary condition for making the most of this unmerited gift of the time that we have. I don’t have any great personal desire to live past my allotted time, what it is. I’ve been blessed, at age 67, to have had a wonderful, wonderful life.
What I haven’t been absolutely prepared to discover was … I want to be around long enough to see these little grandchildren grow up. I have a kind of stake in the future because of them. I’ve seen my children into mature adulthood, well married, with children of their own, in good families. I don’t feel that I’ve dropped the cultural ball, which was the major thing that was given to me to treasure and to hand on.
The idea of going myself doesn’t bother me. The idea of losing a life’s partner is, I think, intolerable. And 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 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, in my own case. … [W]e’ll see what the last act looks like.