Chapter 3
Is Research a Moral Obligation?
Plagues, Death and Aging

By Daniel Callahan

In 1959, Congress passed a “Health for Peace” bill, behind which was a view of disease and disability as “the common enemy of all nations and peoples.”¹ In 1970, President Nixon declared a “war” against cancer. Speaking of a proposal in Great Britain in 2000 to allow stem cell research to go forward, Science Minister Lord Sainsbury said that “The important benefits which can come from this research outweigh any other considerations,” a statement that one newspaper paraphrased as outweighing “ethical concerns.”² Arguing for the pursuit of potentially hazardous germ-line therapy, Dr. W. French Anderson, editor-in-chief of Human Gene Therapy, has written that “we as caring human beings have a moral mandate to cure disease and prevent suffering…”³ A similar note was struck in an article by two ethicists who held that there is a "prima facie moral obligation” to carry out research on germ cell gene therapy.⁴

As if that was not enough, in 1999, a distinguished group of scientists, including many Nobel laureates, issued a statement urging federal support of stem-cell research. They said that because of its “enormous potential for the effective treatment of human disease, there is a moral imperative to pursue it.”⁵ Two other ethicists said much the same, speaking of “the moral imperative of compassion that compels stem cell research,” and adding that at stake are the “criteria for moral sacrifices of human life,” a possibility not unacceptable to them.⁶ The Human Embryo Research Panel, created by NIH, contended in 1994 that federal funding to create embryos for research purposes should be allowed to go forward “when the research by its very nature cannot otherwise be validly conducted,” and “when the fertilization of oocytes is necessary for the validity of a study that is potentially of outstanding scientific and therapeutic value.”⁷

The flavor of these various quotations tells its own story. The proper stance toward disease is that of warfare, seeking an unconditional surrender. Ethical objections, when they arise, should give way to the likely benefits of research, even if the benefits are still speculative (as with stem cell and germ-line research). The notion that a good reason to set aside ethical considerations is that research could not otherwise be “validly conducted” is particularly striking. It echoed an objection of many researchers much heard during the1960s to the imminent regulation of human subject research: regulations would cripple research. That kind of reasoning is the research imperative in its most naked--and hazardous--form, the end unapologetically justifying the means. I am by no means claiming that most researchers or ethicists hold such views. They are still in the minority, but they are among the “shadows” this book is about.

What should be made of this way of thinking about the claims of research? How appropriate is the language of warfare, and how extensive and demanding is the so-called moral imperative of research? In this chapter I want to begin by exploring those questions and then move on to the wars against death and aging, two fundamental, inescapable biological realities so far—and two notorious and clever foes.

The Metaphor of “War”
Since at least the 1880s--with the identification of bacteria as agents of disease--the metaphor of a “war” against illness and suffering has been popular and widely deployed. Cancer cells “invade” the body, “war stories” are a feature of life “in the trenches” of medicine, and the constant hope is for a “magic bullet” that will cure disease in an instant.⁸ Since there are surely many features of medicine that may be likened to war, the metaphor is hardly far-fetched, and it has proved highly serviceable time and again in the political effort to gain money for research.

Less noticed are the liabilities of the metaphor, inviting excessive zeal and a cutting of moral corners. The legal scholar George Annas has likened the quest for a cure of disease to that of the ancient search for the Holy Grail: “Like the knights of old, a medical researcher’s quest of the good, whether that be progress in general or a cure for AIDS or cancer specifically, can lead to the destruction of human values we hold central to a civilized life, such as dignity and liberty.”⁹ “Military thinking,” he has also written, “concentrates on the physical, sees control as central, and encourages the expenditure of massive resources to achieve dominance.”¹⁰ The literary critic Susan Sontag, herself a survivor of cancer, has written that “We are not being invaded. The body is not a battlefield….We--medicine, society--are not authorized to fight back by any means possible…. About that metaphor, the military one, I would say, if I may paraphrase Lucretius: Give it back to the war-makers.”¹¹

While some authors have tried to soften the metaphor by applying just war theory to the war against disease, a sensible enough effort, the reality of warfare does not readily lend itself to a respect for nuanced moral theory. Warriors get carried away with the fight, trading nasty blow for nasty blow, singlemindedly considering their cause self-evidently valid, shrugging aside moral sensitivities and principles as eminently dispensable when so much else of greater value is thought to be at stake. It is a dangerous way of thinking, and all the more so when--as is the case with so much recent research enthusiasm--both the therapeutic benefits and the social implications are uncertain.

Is Research A Moral Obligation?
Yet if the metaphor of war is harmful, lying behind it is the notion of an insistent, supposedly undeniable moral obligation. Nations go to war, at least in just wars, to defend their territory, their values, their way of life. They can hardly do otherwise than to consider the right to self-defense to be powerful, a demanding and justifiable moral obligation to protect and defend themselves against invaders. To what extent, and in what ways, can we be said to have an analogous moral obligation to carry out research aiming to cure or ameliorate suffering and disease, which invade our mind and body?¹²

Historically, there can be little doubt that an abiding goal of medicine has been the relief of pain and suffering, and it has always been considered a worthy and highly defensible goal--as well it should. The same can be said of medical research that aims to implement that goal. It is a valid and valuable good, well deserving of public support. As a moral proposition it is hard to argue with the idea that, as human beings, we should do what we can to relieve the human condition of avoidable disease and disability. Research has proved to be a splendid way of doing that.

So the question is not whether research is a good. Yes, surely. But the important questions are these. How high and demanding a good is it? Is it a moral imperative? Are there any circumstances when ethical safeguards and principles can be set aside if they stand in the way of worthy research? And how does the need for research, and the good of research, compare with other social needs and goods?

The long-honored moral principle of beneficence comes into play here, that of a general obligation to help those in need when it is possible for us to do so.

Philosophically, it has long been held that there are perfect and imperfect obligations. The former entail obligations with corresponding rights: I am obliged to do something because others have a right to it, either because of contractual agreements or because my actions or social role generate rights that others can claim against me. The latter obligations, imperfect in nature, do not have corresponding rights. They are non-specific in the sense that no one can make a claim that we owe to them a special duty to carry out some particular action on their behalf.¹³

Medical research has historically fallen into that latter category. There has long been a sense that beneficence requires that we work to relieve the medical suffering of our fellow human beings, as well as a felt obligation to pursue medical knowledge to that end. But it is inevitably a general, imperfect obligation rather than a specific, perfect obligation: no one can claim a right to insist that I support research that might cure him of his present disease at some point in the future. Even less can it be said that there is a right on the part of those not yet sick, but who someday might be (e.g., those at risk of cancer), to demand that I back research that might help them avoid getting sick. Nor can a demand be made on a researcher that it is his or her duty to carry out a specific kind of research that will benefit a specific category of sick people.

This is not to say that, if someone takes on the role of researcher, and has particular knowledge and skills to combat disease, she has no obligation to do so. On the contrary, the choice of becoming a researcher (or doctor, or fireman, or lawyer) will create what are often called role obligations, and it would be legitimate to insist that medical researchers have a special duty to make good use of their skills toward the cure of the sick. But even here it is an imperfect obligation because no one can claim a right to demand that research be carried out by a particular researcher to work on his specific disease. At most, there is an obligation to discharge his moral role as someone who ought to make a responsible use of his skills and training to work on some disease or another. Even here, however, we probably would not call a researcher who chose to carry out some basic research, but with no particular clinical application in mind, an irresponsible researcher.

These are no mere ethical quibbles or hair-splitting. If the language of an “imperative” is to be used, we can reasonably ask who exactly has the duty to carry out that imperative and who has the right to demand that someone do so. If we can not give a good answer to those questions, we might still want to argue that it would be good (for someone) to do such research and that it would be virtuous of society to support it. But the language of a “moral imperative” could no longer meaningfully be used. We ought to act in a beneficent way toward our fellow citizens, but there are many ways of doing that, and medical research can claim no more of us than many other worthy ways of spending our time and resources. We can be blamed if we spent a life doing nothing for others, but it would be unfair to blame us if we chose to do other good works than support, much less personally pursue, medical research. It is thus a distortion of a main line of western moral philosophy to claim that there is any kind of research--such as medical research-- that carries with it some prima facie obligation to be supported and advanced.

The late philosopher Hans Jonas has put the matter as succinctly as anyone: “Let us not forget that progress is an optional goal, not an unconditional commitment, and that its tempo in particular, compulsive as it may become, has nothing sacred about it. Let us also remember that a slower progress in the conquest of disease would not threaten society, grievous as it is to those who have to deplore that their particular disease be not conquered, but that society would indeed be threatened by the erosion of those moral values whose loss, possibly caused by too ruthless a pursuit of scientific progress, would make its most dazzling triumphs not worth having.”¹⁴ In another place he wrote that “The destination of research is essentially melioristic. It does not serve the preservation of the existing good from which I profit myself and to which I am obligated. Unless the present state is intolerable, the melioristic goal is in a sense gratuitous, and this not only from the vantage point of the present. Our descendants have a right to be left an unplundered planet; they do not have a right to new miracle cures.”¹⁵

In the category of the “intolerable” would surely be rapidly spreading epidemics, taking thousands of young lives and highly destructive to the social life and viability of many societies. AIDS, and some classic earlier plagues, assault society as a whole, damaging and destroying their social infrastructure. But though they bring terrible individual suffering, few other diseases--including cancer and heart disease--can be said now to threaten the well being and future viability of any developed society as a society. They do not require the kind of obsession with victory that invites a ruthlessness and mocking of morality that at times surfaces in the present war against disease, a war that requires “setting aside,” in Lord Sainsbury’s words, “any other consideration.”

Jonas should not by any means be construed as an enemy of research. He was writing in the context of the 1960s debate on human subject research, and was holding only that the cost in time lost because of regulatory safeguards to protect the welfare of research subjects was a small, but necessary, price to pay to preserve important moral values and to protect the good name of research itself. But he was also making a larger point about absolutizing disease, as if no greater evil existed, of a kind that legitimized an unbounded assault. Not everything that is good and worthy of doing, as is research, ought to be absolutized. That view distorts a prudent assessment of human need, inviting linguistic hyperbole and excessive rationalization of dubious or indefensible conduct.¹⁶ Moreover, as well as any other social good, medical research has its own opportunity costs (as an economist could put it); that is, the money that could be spent on medical research to improve the human condition could also be spent on something else that would bring great benefits as well, whether on public health, education, job-creating research, or on other forms of scientific research, such as astronomy, physics, and chemistry.

Health may indeed be called special among human needs. It is a necessary pre-condition of the other goods of life. But at least in developed countries, with high general levels of health for most people for most of their lives, that pre-condition is now largely met at the societal, if not the individual, level; other goods may legitimately compete with it. With the exception of plagues, no disease or medical condition can claim a place as an evil that must be erased, though many would surely be good to erase.

Hardly anyone in medical research is likely to deny the truth of those assertions, but it is not something that is much said in public. One way in which medical research gets absolutized, and then abused, is through turning the evils it aims to erase into nasty devils, evil incarnate. A standard way in which good and just wars often descend to nasty and immoral wars is by demonizing the enemy, made worthy only of eradication (“gooks” in the Vietnam War). The weapons of war, including those brought to bear against disease, are then treated as indispensable, as if no other choice is available.

What I have tried to do so far is to indicate why the language of war, or moral imperative, can be hazardous to use, giving too high a moral and social place to overcoming death, suffering, and disease. It becomes “too high” when it begins to encroach upon, or tempt one to put aside, other important values, obligations, and social needs. Nonetheless, there is a way of expressing a reasonable moral obligation that need not run those dangers. It is to build upon and incorporate into thinking about research, the most common arguments in favor of universal health care, that is, the provision of health care to all citizens regardless of their ability to pay for that care.

There are different ways of expressing the underlying moral claim: as a right to health care, which citizens can claim against the state; as an obligation on the part of the state to provide health care; and as a commitment to social solidarity. The idea of a “right” to health care has not fared well in the United States, which is one reason the 1984 President’s Commission used the language of a government obligation to provide health care¹⁷ A characteristic way of putting the rights or obligations is in terms of justice. As one of the prominent proponents of a just and universal care system, Norman Daniels, has put it, “…by keeping people close to normal functioning, healthcare preserves for people the ability to participate in the political, social, and economic life of their society.¹⁸ To this I would add: and to participate in the family and private life of communities. The aim in Daniels’ view is that of a “fair equality of opportunity.” The concept of “solidarity,” rarely a part of American political thought, is strong in Canada and Western Europe. It focuses on the need of those living together to support and help each other, to make of themselves a community by putting in place those health and social resources necessary for people to function as a community. The language of rights and obligations characteristically focuses on the needs of the community.¹⁹ The language of solidarity is meant to locate the individual within a community and, with health care, to seek a communal and not just individual good.

It is beyond the scope of this book to take up in any further details those various approaches to the provision of health care. It is possible, however, to translate that language and those approaches into the realm of medical research. We can ask whether, if there is a social obligation of society to provide health care--meaning those diagnostic, therapeutic, and rehabilitative capabilities that are presently available—there is a like obligation to carry out research to deal with those diseases and medical conditions that at present are not amenable to treatment or to poorly effective treatment only. “Fair equality of opportunity,” it can plausibly be argued, should not extend only to those whose medical needs can be met with available therapies. Those who are not in that lucky circle can make a case that justice requires they be given a chance as well and that research is necessary to make that possible.

Three important provisos are necessary. First, there is the need to understand that rationing must be a part of any universal health care system: no government can afford to make available to everyone everything that might meet their health care needs. There will of necessity be resource limitations that will require the setting of priorities—and this will be as true of the availability of research funds as well as health care delivery funds. Second, it would seem unjust for money to be invested in research that would knowingly end in treatments or therapies that could not be afforded by government trying to cover all citizens or available only privately to those with the money to pay for them. (See chapters 9 & 10 for a further development of these two points.) Third, it will be important to understand that neither medical research nor health care delivery are the only determinants of health: social and economic and environmental factors have a powerful role as well.

Instead of positioning medical research as a moral imperative it can be understood as a key part of a vision of a good society. A good society is one interested in the full welfare of its citizens, supportive of all those conditions conducive to individual and communal well being. Health would be an obviously important component of such a vision, but only if well integrated with other components: jobs, social security, family welfare, social peace, and environmental protection. No one of those conditions, and others that could plausibly be posited, is both necessary and sufficient; each is necessary but none is sufficient. It is the combination that does the work, not the individual pieces in isolation. Research to improve health would be a part of the effort to achieve an integrated system of human goods. But neither perfect health nor the elimination of all disease is a prerequisite for a good 21st century society--it is a prerequisite only to the extent that it is a major obstacle to pursuing the other goods. It is wonderful for medical researchers and the public that the budget of the NIH has usually outstripped other science and welfare budgets in its annual increases. But it may be a misperception of the full range of our social needs, which might benefit from giving programs devoted to them comparable increases.

In the remainder of this chapter, I want to turn to two purported evils, that of death and aging, both fine case studies for examining the research imperative. I begin with them because, throughout human history, they have been looked upon as evils of a high order, at least for individuals, and because they are most frequently brought forth as stark examples of evil that research should aim to overcome. Two of my closest friends died of cancer and one of stroke during the year in which I wrote this book, so it should be understood that I do not separate what I write here from my own reflections. I wish they were still alive. Those who are not dying are getting old, and--like me--have some mixed feelings about that, not all of them optimistic.

I choose death and aging as my starting point not only because they have long been understood as fixed inevitabilities, but also because they have two interesting differences. Death is treated as an evil in and of itself with no redeeming features (unless, now and then, as surcease from pain). With aging, by contrast, the evil is there--who wants it and who needs it?--but the flavor is one of annoyed resignation, of an evil which (probably) can’t be avoided but which, if we are allowed to let our imaginations to roam, might be understood differently and might even be fought in some successful manner.²⁰ Put another way, the fight against death is seen as imperative, while the fight against aging seems worthy and desirable, even if not quite in the heavyweight class of death. But they both have a special status in medicine: they have been seen as biological inevitabilities, a fixed part of the human condition, while particular diseases that afflict people have been understood--at least in principle--to be open to cure.

The War Against Death
It is not too far-fetched to say that the most important war conducted by modern medicine is the war against death. A decline in mortality rates from various diseases is celebrated as the greatest of medical victories, and it is no accident that the National Institutes of Health has provided the most research money over the years to those diseases that kill the most people, notably cancer and heart disease. Oddly enough, however, the place of death in human life, or the stance that medicine ought, ideally or theoretically, take toward death in medicine has received remarkably little discussion. The leading medical textbooks hardly touch the topic at all other than (and only recently) the care of the terminally ill.²¹ While it is no longer the case that death is not talked about, Susan Sontag was right to note that it is treated, if at all, as an “offensively meaningless event”—and, I would add, “fit only to be fought.”²²

Now of course it is hardly difficult to understand why this attitude is so strong. Few of us look forward to our death, most of us fear it, and almost all of us find it difficult to know what to make of it, how to give it some plausible meaning, whether philosophical or religious. For the individual, death is the end of our consciousness and our experience, of any future (worldly) hopes and dreams, and of our relationship with other people. Unless we are over-burdened with pain and suffering, there is not much good that can be said about death for individual human beings, and most people are actually willing to put up with much suffering rather than give up life altogether. Death has been feared and resisted and fought, and that seems a perfectly sensible response.

Yet it is a response that does not clearly tell us how medicine should look upon death. Death is, after all, a fact of biological existence and, since humans are at least organic, biological creatures, it might seem evident that it needs to be accepted. Death is just there, built into us, waiting only for the conditions necessary for it to declare and express itself. Why, then, should medicine treat it as an enemy, particularly a medicine that works so hard to understand how the body works and how it relates to the rest of nature? Some articulate reasons have been offered to make biological sense of death. Death, the late physician-essayist Lewis Thomas once wrote, “is a natural marvel. All of the life of the earth dies, all of the time, in the same volume as the new life that dazzles us each morning, each spring…In our way, we conform as best we can to the rest of nature. The obituary pages tell us of the news that we are dying away, while the birth announcements in finer print, off at the side of the page, inform us of our replacements.”²³

Many biologists and others have pointed out the importance of death as a means of constantly replenishing the vitality and freshness of human life as a species. New people come into the world and thereby open the way for change and development; others die and thus facilitate the new and the novel. Moreover, is it not the case that our recognition of the finiteness of our lives, the brute fact that they come to an end, itself sharpens our appreciation of what we have and what we might do to make the most of it? If, say, we had bodily immortality in this world, would not the danger of boredom and tedium be a real possibility? “Nothing less will do for eternity,” Bernard Williams has written, “than something that makes boredom unthinkable.” And Williams believes it exceedingly difficult to come up, even imaginatively, with an unendingly satisfying model of immortality.²⁴

Jonas has well caught what seems to me the essence of the ambivalence about death when he speaks of mortality as, in some inextricable way, both a burden and a blessing: “…the gift of subjectivity only sharpens the yes-no polarity of all life, each side feeding on the strength of the other. Is it, in the balance, still a gain, vindicating the bitter burden of mortality to which the gift is tied, which it makes even more onerous to bear?”²⁵ His answer is yes, in part because of the witness of history to the renewal that new lives bring and the passing of the generations makes possible, and in part because it is hard to imagine that a world without death would be a richer biological and cultural world, more open in its possibilities than the world we now have.

Part of the problem is simply that we know nothing beyond what we already know: that life, when it is good, is good. We cannot imagine (save for a religious vision of immortality) anything much better; and surely not the nothingness of death. Hence, we hold tight to what we know. Even so, simply extending life is no guarantee that the good we now find in life, at younger ages, would continue indefinitely into the future; boredom, ennui, the tedium of repetition may well weigh us down. Nor is there any guarantee that our bodies would remain free of frailty, late-late onset dementia, failing organs. Even under the best prospects, there would be hazards, physical and mental, to be run for a prize that might hardly be worth winning.

My own conclusion is this: while it makes sense for medicine to combat some causes and forms of death, it makes no sense to consider death as such the enemy. It distorts the goals of medicine to give it a permanent priority, taking some money from research that could improve the quality of life. Moreover, it is evident, there is no end to the amount of money that can be spent to combat death, which so far in human history always wins in the long run. There will always be what I have elsewhere called the “ragged edge of progress”--that point where our present knowledge and technology run out, with illness and death returning; and however much progress is made, there will always be such a point.²⁶ No matter how far we go, and how successful we are in the war on death, people will continue to die, and they will die of some lethal disease or other, that disease research has yet to master. So far as I can determine, no reason has ever been advanced why death should become the permanent enemy, and it is not evident what would constitute a good reason. If it is possible to doubt some of the reasons offered in favor of mortality it is far more difficult to make an overpowering case why medicine should make mortality itself the ultimate enemy. The most serious questions are how much emphasis research should place on the forestalling of death, and just which kinds of death.

Medicine’s Schism About Death
There is an immediate problem in trying to answer those questions. At the heart of modern medicine is an important though implicit schism about the place and meaning of death in human life. It is a conflict that pits the research imperative to overcome death against the newly emergent (even if historically ancient) clinical imperative to accept death as a part of life in order to help make dying as tolerable as possible. This schism is possibly inescapable, but it nonetheless has some untoward consequences for the setting of medical research priorities and for understanding the appropriate stance of medicine toward death in the care of patients. It bespeaks a fundamental ambivalence about the way death should be interpreted and dealt with. My question is this: if this schism is truly present, and if it creates serious clinical problems and the setting of research priorities, are there some ways to soften its impact, to lessen the friction, and to find a more coherent understanding of death?

In the Western world, death was not considered the enemy of ancient medicine. It could not be helped. Only with the modern era, and the writings of Rene Descartes and Francis Bacon in the 16th and 17th centuries, did the goal of a medical struggle against death emerge.²⁷ Prior to that time, the cultural and religious focus was on finding a meaning for death, on giving it a comprehensible place in human experience, and on making the passage from life to death as comfortable as possible.²⁸ The post-Baconian medicine put aside that search. Death was declared the enemy. Karl Marx once said that the task of philosophy is not to understand the world but to change it. Modern medicine, to paraphrase Marx, has seemed in effect to say that its task is not to understand death but to eliminate it. The various “wars” against cancer and other diseases in recent decades reflect that mission. For what is the logic of an unrelenting war against all lethal disease other than a kind of trench warfare against death itself?

The Mixed Record of Reform
Given that background, it is possible to better understand why the various efforts over recent decades to improve care at the end of life have proved so frustrating, only fitfully successful. They have tried to promote a different outlook on death, and that has not been easy. During the early- to mid-1970s, three major reform efforts were initiated, and they have been pursued ever since. The first was the effort to introduce advances directives into patient care, a strategy designed to give patients some choice about the kind of care they receive when dying. The second was the hospice movement, pioneered by Cicely Saunders in Great Britain and introduced at the Yale-New Haven Hospital in 1974. The third effort was to improve the education of medical students and residents on care at the end of life.

Of the three, hospice is probably the most successful, caring for over 500,000 patients a year out of some 2.3 million annual deaths. But hospice services have been mainly effective with cancer patients, even though there have been recent efforts to extend it to other lethal conditions, heart disease and Alzheimer’s in particular. There is general agreement, moreover, that many terminally ill patients come to hospice much too late, sometimes just a few days prior to their deaths. Neither families nor physicians are always ready to accept death. Advance directives have had at best a mixed record. Despite considerable publicity for 25 years, probably no more than 15% of the population have such directives. Even worse, as a number of studies have shown, patients having them are by no means guaranteed to get what they want.²⁹

Death is still denied, evaded, and in the case of many clinicians fought to the end, bitter or otherwise for patients. As for the educational efforts, they have surely given the issues more salience in medical schools, but what students learn in didactic courses or seminars is often not reinforced by their experience during their clinical years, where the technological imperative--to aggressively use the available life-sustaining technologies--can still reign supreme. A recent survey of medical textbooks found the subject of death strikingly absent and offering little guidance to physicians in the care of dying patients.³⁰

An important thread running through each of the struggling reform efforts has been the ambivalence toward death symptomatic of the schism I have tried to characterize; patient and physician confusion about how best to understand and situate death in human life; an unwillingness to accept the coming of death, and the persistence of the turn to intensified technology in response to uncertainty about death. The great improvement in, and the new prominence of, palliative care is a powerful antidote to that pattern, representing both a return to older traditions of care and a fresh, less troubled response to death.

This record of mixed success has of late been met with a renewed effort at analysis and education. The “Project on Death in America” program of the Soros Foundation, and the “Last Acts Campaign” of the Robert Wood Johnson Foundation, have contributed most generously to that work. It is too early to tell what this new round of initiatives, though most welcome, will achieve. If at the heart of the problem is a profound schism within medicine about the stance that should be taken toward death, then their success is likely to remain limited.

A basic question must be asked: is death to be accepted or fought? There is a conventional answer to that question, even if rarely articulated in any precise way: (a) every effort possible to save life should be undertaken, until that moment when (b) treatment becomes futile, at which point (c) care should be switched from a therapeutic to a palliative mode.

What’s wrong with that model? For all of its seeming reasonableness it is beset by two confounding elements. One of them, as recent debates have made clear, is the difficulty of determining when treatment is truly futile.³¹ Constant technological advances mean that there is almost always something more that can be done for even the sickest patient, one more last, desperate intervention. The other is the psychological naiveté in thinking that physicians—not to mention patients and their families—can suddenly and at just the exactly right moment switch from an interventionist to a palliative mode.³² That is often like attempting to stop large trains, which go a long distance down the track before the brakes take hold.

Eliminating Death, Disease by Disease
The tacit message of the research imperative is that, if death itself can not be eliminated--no one is so bold as to claim that--then at least the diseases that cause death can be done away with; and that amounts to the same thing. As William Haseltine, chairman and chief executive officer of Human Genome Sciences breathtakingly put it, “Death is a series of preventable diseases.”³³ From this perspective, the researcher is like a fine sharpshooter who will pick off the enemy one by one: cancer, then heart disease, then diabetes, then Alzheimer’s, and so on. The human genome effort, the latest contender offering eventual cures for death, will supposedly get to the genetic bottom of things, radically improving the aim of the sharpshooter.³⁴

I mentioned above that the “logic” of the research enterprise seems to make death itself the enemy. I use the word “logic” to suggest that, if it is the aim of research to eliminate all the known causes of death, then it would seem that the ultimate enemy must be death itself, the final outcome of that effort. Yet most researchers and physicians do not see themselves as attempting to eliminate death itself, even if they would like to see the causes of death understood and overcome. They know that death is now, and will remain, part of the human condition; medicine is not chasing immortality. Even so, the struggle against the causes of death continues, as if it must and will continue until those causes are eliminated. Perhaps this tension, or contradiction, is best undertstood as an expression of an ideal of research confronting a biological reality: the spirit of the research enterprise is to eliminate the causes of death, even as it is understood that death itself will not be eliminated. It might be likened to the fight against poverty, where it is understood that there will probably always be some poverty but that the fight is valuable, even if there are some core realities it may never overcome. We might, then, think of the struggle against death as an ideal that may never be achieved, or a dream that may never be realized. However we might best understand this phenomenon, it has its effect at the clinical level.

But even if there is such a dream, why should this affect the care of those who are dying, having passed beyond the limits of effective help? For one thing, as already mentioned, it has turned out to be very difficult, medically and psychologically, to find a bright line (as a lawyer might put it) between living and dying. The increased technological possibility of doing just a little bit more, and then some little bit more again, to sustain life means that it’s getting harder and harder to tell just where that line is. Moreover, the thrust of the research drive against death is to turn death itself into a contingent, accidental event. Why do people keep dying? Listen to the now-common explanations: They die because they did not take care of their health, or because they had genetically unhealthy parents, or because their care was of a low quality, or because the available care is inequitably distributed, or because this year’s technologies don’t sufficiently sustain life (but not necessarily next year’s), or because research has not yet (but will eventually) find cures for those diseases currently killing us. No one just dies anymore, and certainly not from something as vague as “old age.” They die from specific causes, and that can be changed. Death, in that sense, has been rendered contingent and accidental.

The Clinical Spillover
What difference does all of this make at the bedside for the clinician? Such is the pervasive power of the research imperative (even of a benign kind)--rooted in a vision of endless progress and permeating modern (and particularly American) medicine--that it can easily be understood to lead clinicians to think and act as if the death of this patient at this time is accidental or a failure, not inevitable. The feeling of guilt on the part of many clinicians when a patient dies, even if they have done everything possible to keep the patient alive, is perhaps one spillover effect of the research stance toward death: maybe more could have been done and even should have been done--if we had only known what it was. The technological imperative is still another spillover effect, bespeaking a belief that, understood narrowly, if technology is well used, this patient need not die at this time; and, understood broadly, that technological innovation is the royal road to cure.

In the United States, the research imperative to fight death stands foursquare against fatalism, against giving up hope, and against thinking that nature can not be brought to heel. Should we be surprised that such a way of thinking influences clinical medicine as well, introducing profound uncertainties about the appropriate stance toward death? Can we really expect the various reform efforts in clinical care to be as successful as they might so long as the research-induced uncertainty about the inevitability of death is so powerful?

At this point two skeptical thoughts are sure to arise. One of them is a point of logic: the biological inevitability of death does not entail that death at any given point in life is equally inevitable. It may be fixed in nature that we will die, but just how and when is not at all determined. Death is possible at any time by any means, coming faster or slower, brought about by one disease rather than another. In that sense death is, then, contingent. It has no predetermined, fixed time in a person’s life. Since this is true, is progress possible simply by substituting later for earlier death, faster for slower, peaceful for painful. Correct? Not quite. If “later” is always assumed to be better, then the war against death admits of no victory and the research imperative against it admits of no limits. If, however, the wiser goal should be that a faster and more peaceful death is better--admitting of potential success in a way that an all-out struggle against death does not--then a more useful research agenda is possible.

The second skeptical thought is more fundamental. Perhaps the clash between the research imperative (eliminate death disease by disease), and the clinical imperative (accept death as an unavoidable biological reality), is inescapable and insoluble. Perhaps it is one of those cases, of which life presents many, when we want incompatible goods that admit of no happy reconciliation. Perhaps we just have to live with the contradiction, conceding its force but remaining helpless to get beyond it. Even though most of us can think of some elderly people who have found a resolution of the conflict--working to stay alive, yet ready at any moment to die--not everyone can find such an accommodation; and it is all the rarer when facing a premature death. We want to live but know we must die, an ancient and wrenching clash.

Even if we are prepared to accept death for ourselves, it seems wrong to accept the death of others: we lose something of great value, they lose something of great value, and society loses something of great value. Is it not, then, contradictory to argue that death should not be seen as the ultimate evil without compromising the value of life itself, which is what makes it possible for us to be at all, and which no less is the foundation for the value of life for others? I believe it foolish to think there is some easy, or available, way out of this dilemma. I find a quotation of the theologian Gilbert Meilaender (though not, I think, a theological statement) to be helpful, even if not fully satisfactory: “We can say death is no enemy at all, or we can say that death is the ultimate enemy. Neither of these does justice to what I take to be the truth: that death is an enemy because human life is a great good, but that since continued life is not the highest good, death cannot be the greatest evil.”³⁵

Is a longer life necessarily a better life? A shorter life eliminates the possible of experiencing the goods of life that a longer life might make possible. But on that view (assuming continued good health) nothing less than an indefinitely continued life will suffice; there would always be more goals to be had. But in other aspects of our life, and human experience more generally, the fact that good things end does not subtract their value: poems end, music ends, pleasant vacations end, good parties end, the beautiful sunset disappears. Do not those experiences suggest that the length of a life, or anything of value in a life, does not determine its worth or entails that it is diminished by ending? If finitude is not inherently evil, then neither is a finite life span.

Ameliorating the Conflict
There may be some truth in that perspective, but surely also it would be helpful if there were some ways to ameliorate the conflict. If it is a conflict that enormously complicates and in some ways even undermines the goal of better end-of-life care, the clinical mission, then an effort at amelioration seems urgently needed. How might we proceed? The clinical side of that conflict has undergone nearly 30 years of analysis and reform efforts. One of its key findings is that a peaceful death requires an acceptance of death by both physician and patient. The acceptance may be affirming or grudging or simply acquiescent, but it has to be there. Death just is and must be given its due. This means that it is the research drive, and the message that death may simply be an accident not to be accepted, that must be confronted.
Several strategies can be suggested:

1. The idea that research should focus only on premature death. Research ought not, even implicitly, or in its underlying logic, have the eradication of death itself as its goal. There are other goals no less important, including the relief of suffering and the promotion of health (even if death will eventually come). Not only is eradication of death an unattainable goal, it also promotes the idea among the public and physicians that death represents a failure of medicine, one that research will eventually overcome. It is, however, reasonable for medicine to seek to reduce premature death. The federal government now defines a “premature death” as one that occurs before the age of 65. That standard should probably now be changed, raised a few years, but what should not be changed is the concept of a premature death. An implication of this strategy is that, when the average age of death from a disease comes later than the prematurity standard, there should be a reduction of (not an elimination of) research funds to combat it; the money saved should be switched to diseases where most deaths come before the prematurity line. By this standard, and in light of the fact that it is increasingly a disease of the elderly, the NIH cancer budget could be reduced, not constantly expanded. Understood this way, cancer remains an important research target, but one whose priority would gradually lower over time, giving way to more pressing needs.

2. Give the “compression of morbidity” a research status equivalent to that now given to saving and lengthening life. The notion of a compression of morbidity--a shortening of the period of poor health prior to death--has been around at least since the time of the French philosophe Condorcet 200 years ago. It seemed only a pipe dream. But in recent years evidence has begun to accumulate that it might be achieved. The common adage of “longer life, worse health” can now be falsified to some extent. The new evidence indicates that, for those who have good health habits and an adequate socioeconomic foundation to their lives, there can be a significantly lessened chance of a premature death and an old age burdened by illness and disability.³⁶ It is not death that is the enemy, but a painful, impaired, and unhealthy life before death. Research on health promotion and disease prevention requires much greater financial support, as does research designed to improve the quality of life within a finite life span.

3. Persuade clinicians that the ideal of helping a patient achieve a peaceful death is as important an ideal as that of averting a patient’s death. I contended above that one clinical spillover effect of the research war against death is a purveying of the notion that death is an accidental, contingent biological phenomenon. For the clinician that message has meant that the highest duty is to struggle against death and that such a struggle need not (with the help of research) be in vain. In that context, helping patients achieve a peaceful death will always be seen as the lesser ideal, what is to be done when the highest ideal—continuing life—can not be achieved.

The two goals should be given equal value. In practice, this would mean, with critical illness and death was on its way, that the physician would be as anxious that a patient might die a poor death as he or she would that the patient not die at all. The two ideals would always be in tension with each other, rarely admitting of a wholly comfortable resolution. This tension would help to weaken the influence of the values inherent in the research imperative against death, by giving it a meaningful competitor; and it would also help to improve palliative care medicine and good patient care at the end of life. Palliative care would be understood as aimed at all of us, because we will all die, and not just for the losers, those whom medicine could not save. And research on improving palliative care should be given an increased budget; that goes without saying.

4. Redefine medical “progress.” The crown jewel of medical progress is now most commonly understood to be the conquest of lethal disease and an increase in life expectancy. Hardly any triumph is more trumpeted than a declining mortality rate, whether from heart disease, cancer, or AIDs. No doubt that trumpeting will continue and, with premature deaths, it should. But medical progress should increasingly be understood as the avoidance of illness and disability, as the success of medicine in rehabilitating those who have succumbed to disability, as the reduction in conditions that do not kill but otherwise ruin lives (such as serious mental illness), and in helping people better understand how to take care of their own health. Death remains an enemy, but it is only one item in a list of many enemies of life--and not in the long run the most important.

Modern medicine, at least in its research aspiration, seems to have thought that the best strategy in dealing with death is to make it Public Enemy Number 1. It is not, at least not any longer in developed countries, when average life expectancies are approaching 80. The enemy now is lives blighted by chronic illness and an inability to function successfully. Death will always be with us, pushed around a bit to be sure, with death from one disease being superseded by death from some other disease. That can not and will not be changed. But we can change the way people are cared for at the end of life and we can significantly reduce the burden of illness. It is not, after all, death that seems most feared by the public, and certainly not in old age, but a life poorly lived. Something can be done about that, and research has much to contribute.

Aging and Death
Death has, in aging, a twin, if not an identical twin, then one sharing many traits: both have seemed inevitable, both are marked by decline, and both have been feared. If aging has not, as I suggested above, been perceived as terrible an evil as death, it has nonetheless been considered bad enough to merit the laments of poets, writers, ordinary people, and the medically inclined. For centuries, the notion of conquering aging, or rendering its burdens less harsh, has been a part of every culture’s reflection on human fate, joining the struggle against aging with that of the struggle against death. There is another linking characteristic: unless someone dies a premature or accidental death, aging is now more than ever understood to be the main biological gateway to death. With the decline in infant and child mortality--and the reality of death beyond 65 for a majority of people in developed countries--it is harder than ever to cleanly distinguish between aging and death. It is thus difficult to think about eliminating or ameliorating death without also thinking about aging; or to think about improving old age without doing something also about death.

The ancient world took death to be a harsh, but unavoidable, reality, simply a burden to be endured. The modern world has been more hopeful. A softer view, going back to the Italian Renaissance, envisions an old age marked by wisdom, a delight in the simple pleasures of life, and an effort to soften its sharper edges. Still another picture, ever more common, was suggested some years ago by Gerald J. Gruman, one that joins the Enlightenment optimism of Condorcet to that of modern individualism. The elderly ought to reject what Gruman called “medical mortalism” in favor of a scientific attack on aging and death.³⁷ No less important is a kind of living for oneself, a rejection of communal notions of a self-sacrificial life in favor of personal creativity and self-assertion. Specifically rejected are idle musings about “central questions of meaning and value,” which are endlessly “open for future resolution.” This is not far from another look into the future, one that sees the scientific conquest of aging and added years of youth as bringing “the transformation of our society from a pattern of war and struggle to an era of utopian peace…[allowing] adequate time to uncover the secrets of the natural universe…that could serve as the foundation for a civilization of never-ending progress.”³⁸

Aging as “Disease”
But where does aging stand as an object of scientific research? Is it a disease like other physical pathologies or is it, like death, a “natural” biological inevitability? The strongest case for its inevitability is that, unlike other pathologies, none of which is inevitable in every person, all humans are subject to it, as is every other organic creature. Aging is predictable, that is, in a way that nothing else ordinarily classified as a disease is. We may, or may not, get cancer or heart disease or diabetes, but we will surely get old and die. At the same time it is evident that much of the decline associated with age, particularly the increase in chronic disease and disability, is accessible to cure or amelioration. Even many of the other biological indices of aging--decline of hearing, rise of blood pressure, bone mineral loss, reduced muscle mass, failing eyesight, decreased lung function--are open to compensatory intervention though not at present to complete reversal.

In short, if aging is in many respects something other than disease, it has enough of the characteristics of disease to invite, and respond to, medical tinkering and improvement. There is for that reason not much gain in trying to classify it is as “natural,” if by that is meant that nothing should be done about it. On the contrary, it can be—and has in fact been—treated effectively as if it is a disease, not by combating old age as such but treating the undesirable conditions associated with it.³⁹ That route is one possibility, while the other is to take on the biological process of aging itself as a research target. Timothy Murphy has suggested two pertinent questions here. Instead of asking “is aging a disease?” we should ask, first, is “aging objectionable such that its prevention and cure ought to be sought?” Second, can a convincing argument be developed in favor of a “cure” for aging to show that “human significance warrants [it] and possibly seeks such a cure and that the social costs of curing aging are morally acceptable?”⁴⁰

Is aging “objectionable”? Well, it is hard to find many people who welcome it, at least the advanced phases of aging, where the decline is steep and the disabilities crippling. But does the fact that we don’t like it show that it is inherently objectionable, some kind of offense against human dignity? That is a harder case to make, especially since many ways have been found by a variety of cultures to allow the aged to accept their aging, and to treat the aged with dignity. It is a trivialization of the idea of dignity to make it dependent upon the state of our bodies or minds. If that is done, then dignity becomes nothing but an accident of biology, with some people lucky to have it and others not. That is a corruption of the idea of human dignity, the essence of which is not to reduce value of people to a set of acceptable characteristics, such as the proper race, or sex, social class, or bodily traits, but to ascribe dignity to them apart from their individual characteristics.

There is another way of looking at aging. While it is possible to situate the place of death within evolution, and to see its value in endlessly renewing human vigor and possibility, that is not so easy to do with aging. It seems to serve no useful biological function other than as a prelude to death; and for just that reason might itself be understood as part of the same biological process. Can aging successfully be distinguished from the decline that brings death such that the former can sensibly be resisted while not equally resisting death? We might then agree that, while aging is not incompatible with human dignity, it is objectionable enough to merit serious scientific attention. The collective “we” of evolution may need it together with its twin, death, but the “we” of living cultures could do with considerably fewer of its burdens and downward slopes.

Aging and Its Longevity
Does that mean we need to find a “cure” to bring that about? An immediate difficulty here is that it is not clear what a “cure” of aging might look like. If death is the final outcome of aging, for all biological creatures, does it begin at birth or in adulthood? How that question is answered scientifically might then lead us to ask whether a cure would look to a perpetual youth or a perpetual adulthood (and then young or old adulthood). Or might we envision a slowing of the aging process to a snail’s pace, not exactly a clean cure but an indefinite forestalling of the worst of the present consequences of aging and its final outcome, death?

There are three meaningful possibilities for the cure or amelioration of aging, and I will put them in categories (to be used also in the next chapter in another context).

a. Normalizing life expectancy, The aim here is to work to bring everyone up beyond what would be considered a premature death to what is now the average life expectancy in the most developed countries of the world, e.g., Japan, which is slightly over 80 for women (and bring men up a few years to a life expectancy equal to females). This trend is already underway (though not in all poor countries), driven by improved public health standards, better education, housing, diets, and economic status. Normalization must, however, be accompanied by improved standards in the quality of life, and much of that can be accomplished through research and technological innovation. The cure or amelioration of osteporosis, arthritis, Alzheimer’s disease and other dementias, and improved methods of dealing with loss of hearing and sight, would be high on any list of valuable research goals.

My characterization of normalization retains the idea of a premature death. There are at least four ways of defining a premature death, each of them arbitrary to a considerable degree. There is a death that comes earlier than the average life expectancy in a population; that might be called the statistical definition. There is the cultural definition, which is that age when, in general, people are classified as young or old for various social or political purposes. The age of 65 has, since the Bismarckian welfare programs of the late 19th century in Germany, been widely used as the dividing line. Then there is what I think of as the psychological meaning of a premature death, which might be described at that age at which people begin thinking of themselves as old. Finally, there is what can be called the biographical definition, that is, that stage in life when the main tasks and goals of a life have been accomplished: work, procreation, parenthood, education, travel, and whatever else people have liked to achieve.

Each of these definitions is arbitrary in the sense that each is, and always will be, variable and moving. The statistical definition will change as average life expectancy increases (most places) or decreases (Russia and many sub-Saharan countries). The cultural definition will move as more people go into old age in good health, are capable of remaining active even if not employed, and are seen as still part of the productive, non-dependent segment of society. The psychological definition will be influenced by the cultural of course, but not entirely; people do vary in their own sense of age and aging. And the biographical definition will be influenced by varying life goals.
Despite the variables in each of the definitions, they remain useful for establishing social programs, for creating conventions and expectations of behavior at different ages (it is, for many, a relief to become old, officially relieving them of many earlier responsibilities), and for helping to set some targets for biomedical research. Sixty-five now seems too young for death at that age to be designated not premature, while age 70 has become increasingly plausible; and the cutoff age may go up further in the future. There can well be a legitimate gap between what is culturally thought of as a premature death and the aim of bringing everyone up to the statistical average. My rationale for the distinction is that it is possible for most people to have lived a full and fruitful biographical life prior to age 70, and thus to feel their loss less than that of a much younger person. We may also have different reasons for setting the age of various social programs (e.g., employment possibilities) lower than average life expectancy (such as Medicare or eligibility for special housing).

Much of the research agenda is already in place for the normalizing of aging, consisting of what is already known to improve health and to avoid premature death. It is a mixture of improved public health programs, decent medical care (with an orientation to health promotion programs designed to change behavior, and primary care), healthy life styles, good education, jobs, housing, and a welfare safety net. Beyond that, research on chronic diseases that lead to premature death, that create disability in old age, and that ruin or significantly diminish the quality of life, are appropriate. It is, moreover, appropriate that government support such research, contributing as it does to the overall health and well being of the population as a whole. This will not be true of the next category.

b. Maximizing life expectancy. The purpose of research efforts to maximize life expectancy would be to bring everyone up to what are now the historically longest known human life spans, between 110 and 122 years. If some few people can live that long (and want to), why not make it theoretically possible for everyone to get there? There is a certain plausibility to that idea, if only because the course of evolution has shown that species have acquired very different life spans; life spans are biologically malleable. Recent research has, moreover, begun to suggest that there may be no fixed maximum life expectancy, but enough is not yet known to bring any certainty to such a conclusion.⁴¹ Earlier estimates at the least have again and again been proved wrong in recent years, often because of extrapolations from past trends of causes of death or age of death, both of which have been changing.

The death of a French woman at 122 in the late 1990s and the regularity with which people living between 105 and 110 are now being reported can not fail to catch the eye. Prior to 1950 centenarians were rare, and there may never have been any before 1800. Since 1950, however, their numbers have doubled every ten years in Western Europe and Japan (with women outnumbering men by four to one and even more so with higher ages); and those centenarians now alive live two years longer on average than a few decades ago. ⁴²

Nonetheless, while the trend is strongly in the direction of more people who are very old, S.J. Olshansky has presented some strong data indicating how hard it will be to move everyone far along in that direction. Working with mortality trends in France and the United States, he shows that it would take huge reductions in mortality rates at every age from present levels. To move, for instance, from an average life expectancy of 77 in France (combining male and female) to 80 would require an overall mortality decline of 23%; and it would take a decline of 52% for all ages to move the average to age 85, and 74% for the average to move up to age 90. Since mortality rates are already low for younger ages, most of the mortality decline would have to take place among those over age 50.⁴³ While that is not theoretically impossible, it looks implausible as a practical matter.

The difficulty of doing that can be envisioned by recalling that a cure for cancer, the second greatest killer in the United States, would only bring about a 1.5% overall decline in mortality. In response to the contention that lifestyle modifications could bring about changes of the necessary magnitude, a number of studies have suggested that mortality would not significantly change if the entire population lived in an ideally healthy way.⁴⁴ J. W. Vaupel (never citing Olshansky and admitting his own calculations are rough) is more optimistic. He holds that a decline in mortality rates in France at the same pace as that which has prevailed for the past, means that most people can expect to live to 90 in the not too distant future.⁴⁵ Whatever the final truth here, which will take decades to appear, there is considerable good sense in Kirkwood’s conclusion that “the record breakers [for individual life span] are important…[but] the major focus for research must be to address the main body of the life span distribution, i.e., the general population, and to improve knowledge of the causes of age-associated morbidity and impaired quality of life.”⁴⁶

c. Optimizing life expectancy. Two versions of optimization have been talked about over the years. One of them is bodily immortality, and that is the most ancient. The other would be to move the average life expectancy to, say, more than 150 years. (Since immortality is not seriously proposed by many, and no clear scientific theory even exists about how that might be achieved, I will put that aside here.) As the previous analysis of maximizing life expectancy suggested, it will be very hard, even if not theoretically impossible, to get average life expectancy to 85, much less 100. Most commentators seem able to envision incremental gains within the limits of present biological and medical knowledge, but agree as well that only some radical scientific breakthroughs could get us to and beyond 150. The principal obstacle appears to be the multi-factorial nature of the aging process; no single magic bullet is likely to do the job. All of the human organs, including the brain, would have to benefit simultaneously from the breakthrough for the results to be anywhere near desirable.

As someone who has been following the scientific developments in understanding aging for over 30 years, it is remarkable how little practical progress seems to have been made, even though there has been a gain in knowledge about the aging process. Earlier theories have been rejected or called into question, including the notion that there is a fixed limit to the replication of genes over a life span, once thought to be 50 times, or that evolution necessarily requires unalterable programmed death, or that genes age. At the same time, recent research on telomeres--stretches of DNA and the proteins that bind them and which protect the ends of chromosomes--has shown that they become shorter over time as a cell divides, eventually dying. That reconfirms the notion of a division limit to cells which, if better understood, could open the way to means of holding off the accumulated, progressive decline of the cells. It is an extension of the long-held view that the aging process is one that sees a gradual breakdown of the genetic mechanisms that preserve life; and the trick is to find a way to stop or slow them. In this view, aging is a failure of biological adaptation, which Michael Rose says is a case of “natural selection abandoning you.”⁴⁷ Research on telomeres, nutrition, free radicals, anti-oxidants, apoptosis (cell breakdown), hormonal regulation, cell rejuvenation and ways of repairing DNA are well underway. Alternatively, the search is on for those positive genetic factors that protect life, that have helped individuals flourish in earlier years of life, and which might be enhanced to continue doing so.⁴⁸

In sum, the genetic approach to life span extension aims to find the basic underlying mechanisms of aging, still poorly understood, and then to discover ways of changing and manipulating them. If there is to be a radical change in life expectancy, this is currently the only seriously envisaged way of getting there.⁴⁹ A medical approach, by contrast, focuses on the various disabilities and diseases that bring poor health, and eventually death, to the elderly, and has been (as noted above) the main approach to the incrementalism of the maximizing strategy, far more limited in its ultimate possibilities.

A Much Longer Life: Should We Want It? Do We Need It? Can We Stand It?
Whether a form of rationalization or a higher insight, it is striking that most of the imaginative literature that has dealt with life extension over the years has reached a negative conclusion. Whether because of boredom or the possibility of debilitation, a very extended life, whether young or old, has been debunked. Even so, the idea of a fountain of youth or a more up-to-date vision of a long life in good, vigorous health, hangs on. There are many people--and all of us know some--who would like to live indefinitely; and almost everyone, if given a choice, and not in utter misery, would want to live at least one more day, and one more after that. Even if I can see some point in the evolutionary benefits of death and a change of the generations, that is a terribly abstract way of looking at my own life, a life that is doing well and not too interested in making its evolutionary contribution in the near future. A longer life beckons.

I am not alone. The Alliance for Aging Research reported in 2000 that it had discovered 25 firms it labeled “gero-techs” because of their focus on applied aging research.⁵⁰ The Alliance itself sees gerotechnology as a viable market possibility and contributing to the finding of ways—through improved health--to avoid rationing health care to the elderly in the future. In the 21st century, its Director, Daniel Perry, says that through gerotechnology, “ the drive to discover the means to produce youthful health and vitality is no less than a matter of national necessity.”⁵¹ It is not, then, just that some people want a longer and healthy life. Research on aging is now being advanced as a way of avoiding the economic and other problems of aging societies.

The language of “national necessity” seems to me a variant way of speaking of a research imperative. An immediate problem comes to mind. Is the aim to improve the health of the elderly within the normalization model, that is, working to get everyone up to the present average life expectancy? If so, that would be consistent with a goal of compressing morbidity, increasingly feasible. Or is the aim (of some of those gero-tech firms, for instance) that of pushing forward the length of life, moving into the maximizing or optimizing range? In that case, it may be much harder to continue improving morbidity. Most (though not all) of those over age 100 require significant help with what geriatricians call activities of daily living, suffer from various chronic conditions, are usually frail, and will have some degree of dementia; and it all gets worse after 105. It may well be the case that a reduction in morbidity can keep pace with a reduction in mortality, but most likely only if the net result for life expectancy gains move slowly.

Yet the health problems and uncertainties connected with increased longevity are hardly the only that need to be thought about. What are the other social consequences of efforts in that direction? That is a difficult question to answer, if only because so much must be speculative and because there are different possible directions (and mixtures of directions) in which future developments could go. We are already on one path, that of normalization, aiming to improve the quality of life of the elderly, not directly trying to lengthen the average life expectancy but getting, without trying, a gradual movement in that direction.

There is already considerable knowledge about that trend. In the United States it is known that, within 20-30 years, when the baby boom generation will be retiring in large numbers and the proportion of elderly moving from 13% to 18%, there will be serious problems sustaining the present Medicare program at its present level.⁵² Comparable, and perhaps even worse, problems will be faced in other countries (Germany, for example, expects to have nearly 24% of its population over age 65). The correlative decline in the number of young people to pay for the health care of the old (the so-called dependency ratio issue) will only exacerbate the situation, as will the continued introduction of new, often beneficial, but usually more expensive technologies; and public demand for ever-better medicine will not be much help either.

Something will have to give here, and there is already the expectation of moving forward the age of eligibility for Medicare, from 65 to 67, and further moves in that direction can be expected. The promise of reduced disability for the aged in the years to come will be of great help here, but even so some unpleasant policies will probably have to be pursued: means-testing for the elderly rather than full and free coverage; rationing of health care, overt or hidden; constraints on health care providers and hospitals; and constant efforts to wring greater efficiency out of the system. Some universal system of health care, not yet on the horizon (and which I support), might lead to a generally more rational and equitable system, but it would increase the govermental cost of health care and might not directly help solve the elderly health care problem. There are some optimistic voices to be found, but not too many. The Alliance for Aging Research group, noted above, believes that salvation lies in improved technologies to bring better health to the elderly; and others believe that some combination of greater efficiency, more choice on the part of people, and savings accounts will make it possible to weather the baby boom era—an era that will eventually end anyway, somewhere in the vicinity of 2050 or so, bringing a more affordable situation.

Once a move is made toward maximization and beyond, then a larger range of problems begins to emerge, and much would depend upon the kind of age extension that research might produce. A longer life with a concomitant gain in vigor would be one possibility. Another would be a longer life but at present levels of vigor. Still another would be a longer life that simply stretched the length of the decline. And still another would be a longer life with mixed effects, mental and physical, some good and some bad.
Each of these possibilities would raise its own set of problems, and I will not try to imagine what they might be. Yet whatever they might be, even small changes toward any of them would have strong general effects. Included would be the impact on other age groups and how their lives might be altered: paying for the extended years, jockeying for jobs and promotion and positions of leadership, negatively influencing retirement and social security. How would it all be paid for, and would the elderly be forced to work more years than they might like? There would also be a great impact on childbearing and child-rearing, as different definitions of youth and middle-age emerged and as the job market for women of childbearing age changed (and what would that age come to be?); and an impact on social status and community respect, as a larger and larger portion of the elderly emerged (and with that emergence the possibility of intergenerational conflict). Everything, in a word, would have to be changed, depending on the extent of the average age increase and the various forms it might take.
Suffice it to say that a society with a much larger proportion of elderly would be a different kind of society, perhaps good, perhaps bad; much would depend upon the strategies employed to cope with all the needed changes and how much time was necessary to put them in place. If by chance some striking genetic breakthrough should take place, allowing lives of 150 years, the impact would be all the more dramatic, and the necessary changes in social policy all that more the radical.

Is There a Societal Need to Increase Average Life Expectancy?
Do we need as societies a breakthrough to the possibilities of maximizing and optimizing average life expectancy—and thus a research drive to achieve it? It is very hard to find any serious argument that there is a social need for that development, as if future societies will be inadequate and defective unless everyone lives longer lives. None of our current social problems--education, jobs, national defense, environmental protection, etc.--can be blamed on too low an average life expectancy, or would be solved by longer lives. Many would be made worse. At most, many individuals have said they would like to see that happen for themselves, and would probably be willing to pay for it. But for how much of the total direct and indirect costs of living out extended life spans? Ought we to want it for ourselves?

I say “ought” to force ourselves to ask just exactly what we think we would gain beyond a life that ended on average at 80. This question should give everyone pause since no one could know whether he or she would in fact fare well, whether the kind of extended life span would be one they found acceptable, and what they would do if it did not turn out as planned. We might agree that there are many unfortunate features of the present situation and most of us can think of reasons why we would like more years. But since there could be no guarantee that more years would give us a happier, more satisfying life, we might be no better off at all, and maybe worse off. No clear correlation between a satisfying life (assuming good health and the avoidance of a premature death) and length of life has ever been demonstrated. How many people have any of us known who died at age 80, or 90, but for whom we felt sorrow because of all the possibilities that lay before them? I have been to many funerals of very old people and I have yet to hear anyone lament their loss of future possibilities, even as they may have been sorry to lose them as friends or relatives.

Some of us may be prepared to take our chances. As a policy matter, what stance should be taken toward research efforts to deliberately find ways of extending average life expectancy and individual life spans? There are three possibilities: to support such research at the public, government level and encourage the private sector to pursue it; to refuse public grants for such research but permit it in the private sector; to refuse public grants and to use considerable social and economic pressure to discourage it at the private level (I ignore here the possibility of banning such research, which is neither likely nor easily possible).

Unless someone can come up with a plausible case that the nation needs everyone to live much longer, and longer than the present steady gain of normalization will bring, there is no reason whatever for government-supported research aimed at maximizing or optimizing life spans. Longer lives may in any case come about as an accidental by-product of efforts to improve the elderly’s quality of life; but there is no reason to court that possibility directly with targeted research. Nor is there any reason to encourage the private sector to pursue it either, and for the same reasons.

Yet that sector will undoubtedly do so if promising leads open up, and if they believe a profit can be made. Should that happen, there would be every reason to put moral, political, and social pressure on them not to move on in the research unless they took part in a major national effort to work through in advance the likely problems that success might bring them. The matter would be important enough, the implications grave enough, that it would be folly to wander in with no forethought or strategies in place to deal with the economic and social consequences, many of which can be realistically imagined. To drop a new and far-reaching technology on our society, or any society, simply because some people will buy it would be irresponsible. It would instead require the fullest airing over a decent period of time and in a systematically organized fashion. The public could then decide what they were likely to see happen and be in a position to make a considered judgment about a collective response.

There is no doubt also that a private-sector, age-extending, anti-aging product would be expensive (most new pharmaceuticals are, and would not otherwise be developed) and probably not available to everyone at first, and possibly never. As with many expensive new technologies, it is probably reasonable to say that they should not be denied to everyone simply because not everyone could afford them.⁵³ But it would also be an insufficient response to say that, since there will undoubtedly be disagreement on the matter, research efforts to extend life expectancy to some optimizing level should simply be left to the market and private choice as a way of by-passing some (unlikely) collective community consensus. However that worked out, it is not difficult to imagine the numerous problems that would arise for everyone if some had it and some did not (of which inequity might be the least of them). Would different social security, retirement, and job arrangements have to be devised for them to live side-by-side with those who did not choose to take the product? What responsibility would they bear for the consequences of their choice--a total personal responsibility, for better or worse, or would some social safety net be available to help them (paid for by those who did not choose to go that way)? Those are questions a pure market approach can not answer, but a failure to do so would be to put not only those who chose to live longer lives at risk, but the rest of us as well.

The question of research deliberately aimed at extending average life expectancy, and research aimed at changing the course of aging, bears directly on the goals of medicine, and the use of medical research to go beyond the traditional aim of preserving and restoring health. I have argued that death itself is not an appropriate medical target, and that there is no social need to greatly extend life expectancy. But how might we think more broadly about research aiming not only at health as traditionally understood but also to enhance human nature and human characteristics?

_________________

ENDNOTES

1. Renee C. Fox, "Experiment Perilous: Forty-Five Years as a Participant Observer of Patient-Oriented Clinical Research," Perspectives in Biology and Medicine 39 (1996): 206-226, 210.
   
2. Ian Gallagher and Michael Harlow, "Health Chiefs? Yes to Human Clones," International Express, 1-7 August 2000, 1 & 10, 10.
   
3. W. French Anderson, "Uses and Abuses of Human Gene Therapy," Human Gene Therapy 3 (1992): 1-2, 1.
   
4. Ronald Munson and Lawrence H. Davis, "Germ-Line Gene Therapy and the Medical Imperative," Kennedy Institute of Ethics Journal 2 (1992): 137-158, 137.
   
5. ---
   
6. Glenn McGee and Arthur Caplan, “The Ethics and Politics of Small Sacrifices in Stem Cell Research,” Kennedy Institute of Ethics Journal 9 (1999): 151-158,152.
   
7. Report of the Human Embryo Research Panel (Bethesda, Md.: National Institutes of Health, 1994), 44-45.
   
8. James F. Childress, "Metaphor and Analogy," in Encyclopedia of Bioethics, Revised Edition, ed. Warren Thomas Reich (New York: Simon and Schuster Macmillan, 1995), 1765-1773.
   
9. George Annas, "Questing for Grails: Duplicity, Betrayal and Self-Deception in Postmodern Medical Research," Journal of Contemporary Health Law Policy 12 (1996): 297-324.
   
10. George Annas, "Reforming the Debate on Health Care: Reform by Replacing our Metaphors," The New England Journal of Medicine 332 (1995): 744-747.
    
11. Susan Sontag, AIDS and its Metaphors (New York: Farrar, Straus, and Giroux, 1989), 95.
    
12. Meilaender, “The Point of a Ban.”
    
13. Onora O'Neill, "Duty and Obligation," in Encyclopedia of Ethics, ed. Lawrence J. Becker and Charlotte B. Becker (New York: Garland Publishing, 1992); Richard B. Brandt in Encyclopedia of Ethics, ed. Lawrence J. Becker and Charlotte B. Becker (New York: Garland Publishing, 1992), 278; and Richard B. Brandt, "The Concepts of Obligation and Duty," Mind 73 (1964): 374-393.
    
14. Hans Jonas, "Philosophical Reflections on Experimenting with Human Subjects," Daedalus 98 (1969): 219-247, 245.
    
15. Hans Jonas, "Philosophical Reflections on Experimenting with Human Subjects," in Philosophical Essays: From Ancient Creed to Technological Man, ed. Hans Jonas (Englewood Cliffs: Prentice-Hall, 1974), 105-131, 117.
    
16. See also Meilaender, “The Point of a Ban.”
    
17. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Securing Access to Health Care, Vol. 1 (Washington, D.C.: U.S. Government Printing Office, 1983), 22-23.
    
18. Norman Daniels, “Justice, Health, and Healthcare,” The American Journal of Bioethics 1 ( 2001): 3.
    
19. Ibid. See also Ronald Bayer, Arthur Caplan, and Norman Daniels, eds., In Search of Equity (New York: Plenum Press, 1983); and “European Issue: Solidarity in Health Care,” The Journal of Medicine and Philosophy 17 (1992): 367-477.
    
20. Ronald Puccetti, "The Conquest of Death," Monist 59 (1976): 249-263.
    
21. Annette T. Carron, Joanne Lynn and Patrick Keaney, "End-of-life care in medical textbooks," Annals of Internal Medicine 130 (1999): 82-86.
    
22. Susan Sontag, Illness as Metaphor (New York: Farrar, Straus, and Giroux, 1977), 8.
    
23. Lewis Thomas, The Lives of a Cell: Notes of a Biology Watcher (New York: Penguin Books, 1978).
    
24. Bernard Williams, Problems of the Self (Cambridge, Ma.: University Press, 1976), 94-95; and Eugene Fontinell, Self, God, and Immortality: A Jamesian Investigation (New York: Fordham University Press, 2000); Chapters 7-8.
    
25. Hans Jonas, "The Burden and Blessing of Mortality," Hastings Center Report 22, no. 1 (1992): 34-40, 37.
    
26. Daniel Callahan, The Troubled Dream of Life: In Search of a Peaceful Death (New York: Simon & Schuster, 1993).
    
27. Darrel W. Amundsen, "The Physician's Obligation to Prolong Life: A Medical Duty Without Classical Roots," Hastings Center Report 8, no. 4 (1978): 23-30.
    
28. Philippe Aries, The Hour of Our Death, trans. Helen Weaver (New York: Knopf, 1981).
    
29. E. J. Larson and T. A. Eaton, "The Limits of Advanced Directives: A History and Reassessment of the Patient Self-Determination Act," Wake Forest Law Review 32 (1997): 349-393.
    
30. Carron, Lynn and Keaney, "End-of-life care in medical textbooks."
    
31. L. Scheiderman and N. Jecker, Wrong Medicine: Doctors, Patients, and Futile Treatment (Baltimore: Johns Hopkins Press, 1995).
    
32. Callahan, The Troubled Dream of Life.
    
33. Quoted in Lawrence M. Fisher, "The Race to Cash in on the Genetic Code," The New York Times, 29 August 1999, sec. 3, p. 1.
    
34. William B. Schwartz, Life Without Disease: The Pursuit of Medical Utopia (Berkeley: University of California Press, 1998).
    
35. Personal communication.
    
36. Anthony J. Vita et al., "Aging, Health Risk, and Cumulative Disability," The New England Journal of Medicine 338 (1998): 1035-1041.
    
37. Gerald J. Gruman, "Cultural Origins of Present-Day 'Ageism': The Modernization of the Life Cycle," in Aging and the Elderly: Humanistic Perspectives in Gerontology, ed. Stuart F. Spicker et al. (Atlantic Highlands, N.J.: Humanities Press, 1978), 359-387.
    
38. Robert Prehoda, Extended Youth: The Promise of Gerentology (New York: Putnam, 1968), 254.
    
39. Arthur L. Caplan, "The Unnaturalness of Aging-- A Sickness Unto Death?," in Concepts in Health and Disease, ed. Arthur L. Caplan, H. Tristram Engelhardt and James McCarthey (Reading, Mass.: Addison-Wesley, 1981), 725-737; and Daniel Callahan, "Aging and the Ends of Medicine," in Biomedical Ethics: An Anglo-American Dialogue, ed. Daniel Callahan and G. R. Dunstan (New York: New York Academy of Sciences, 1988), 125-132.
    
40. Timothy F. Murphy, "A Cure for Aging?" The Journal of Medicine and Philosophy 11 (1986): 237-255.
    
41. T. B. L. Kirkwood, "Is There a Limit to the Human Life Span?," in Longevity: To the Limit and Beyond, ed. Jean- Marine Robine, James W. Vaupel and Michael Bernard Jeune (Berlin, New York: Springer, 1997), 69-76; and Ali Ahmed and Trygve Tollefshol, “Telomeres and Telomerase: Basic Science Implications for Aging,” Journal of the American Geriatric Society 49 (2000): 1105-1109.
    
42. Shiro Horiuchi, “Greater Lifetime Expectations,” Nature 405 (2000): 744-745.
    
43. S. J. Olshansky, "Practical Limits to Life Expectancy in France"; in Longevity: To the Limit and Beyond, 1-10.
    
44. Olshansky, "Practical Limits to Life Expectancy in France."; and Rogers, Epstein, and Muldoon.
    
45. James W. Vaupel, "The Average French Baby May Live 99 or 100 Years," in Longevity: To the Limit and Beyond, 11-27.
    
46. Kirkwood, "Is There a Limit to the Human Life Span?" 75.
    
47. Michael R. Rose, "Aging as a Target for Genetic Engineering," in Engineering the Human Germline, ed. Gregory Stock and John Campbell (New York: Oxford University Press, 2000), 54.
    
48. James W. Vaupel et al., "Biodemographic Trajectories of Longevity," Science 280 (1998): 855-860; and James R. Carey and Debra S. Judge, “Life Span Extension in Humans is Self-Reinforcing: A General Theory of Longevity,” Population and Development Review 27 ( 2001): 411-436.
    
49. E. Timmer et al., Variability of the Duration of Life of Living Creatures (Amsterdam: IOS Press, 2000), 161-191.
    
50. Daniel Perry, "The Rise of the Gero-Techs," Genetic Engineering News 20 (2000): 57-58.
    
51. Ibid., 57.
    
52. See Daniel Callahan, "Aging and the Ends of Medicine," in Biomedical Ethics: An Anglo-American Dialogue, ed. Daniel Callahan and G. R. Dunstan (New York: New York Academy of Sciences, 1988), 125-132; Victor R. Fuchs, "Medicare Reform: The Larger Picture," Journal of Economic Perspectives 14 (2000): 57-70; David M. Cutler, "Walking the Tightrope on Medicare Reform," Journal of Economic Perspectives 14 (2000): 45-56; and Mark McClellan, "Medicare Reform: Fundamental Problems, Incremental Steps," Journal of Economic Perspectives 14 (2000): 21-44.
    
53. John Harris, "Intimations of Mortality," Science 288 (2000): 59.