PCBE:Taking Care: Ethical Caregiving in Our Aging Society (Chapter 3)

The President's Council on Bioethics
Washington, D.C.
September 2005
www.bioethics.gov

The Ethics of Caregiving: General Principles
Chapter 3

In the years ahead, the challenges of caring well for elderly persons-including and especially those suffering from debility and dementia-will become more apparent and more urgent. As Chapter 1 suggested, we may face a genuine caregiving crisis-with more needy individuals and fewer available caregivers, with growing costs of long-term care and fewer workers to support social programs, with longer periods of diminished function and the ever-present temptation to neglect or abandon those in need of constant attention. Looking ahead, it is thus incumbent upon us to ask: What constitutes good care, what makes it possible, and how can we become or support good caregivers?

In a certain sense, the answer is obvious: good care is possible when there are people willing to care, able to care, and having resources to care. Good care is possible when family members and friends make the sacrifices necessary to be caregivers, when health care professionals and social workers tend to the real needs of their patients, and when society does not leave families to fend entirely for themselves. But the obligations of caregiving often confront us with some hard human questions: What does good care require in the face of worsening physical and mental deterioration? What is the relationship between good care and a good death? What should we do when the duties of caring for our father or mother with dementia make it much harder to care for our young children? What moral aims and ethical principles should guide caregivers-in-action?

The following analysis attempts to address these questions in some detail, in an effort to offer guidance to families, doctors, and policymakers striving to care well for vulnerable persons as they approach the end of life. In this chapter we take up general ethical considerations, looking for principles and guidelines; in the next chapter we consider concrete cases, looking to display ethical caregiving in action. We will pay primary attention to the ethical dilemmas of caring for persons with dementia, and especially to the wrenching decisions about life-sustaining treatment that arise at the bedside when persons with dementia get sick in other ways.

Before turning to the ethics of caregiving, we need to make sure that we understand who the caregivers are and that we recognize the many social, economic, and institutional factors that dictate whether good care is truly possible. Although the Council's special responsibility requires us to develop sound ethical analysis and evaluation, we recognize the limited value of such ethical reflection in the absence of adequate caregiving institutions and devoted caregivers with the character and resources to stay the course.

For many aging persons, and notwithstanding the many changes in the American family over the past few decades, family is still the primary home of care and caregiving. Most men and women who marry still take an oath of fidelity to care for one another "in sickness and in health, for better and for worse." Such fidelity-not only between spouses, but between parents and children-has surely been tested in the modern world: by divorce, geographical separation, smaller families, and a culture that often does not value caregiving as much as other pursuits and occupations. Often, in families, no one is willing, able, or available to care; and many people, by the time they reach old age, have no family at all. Moreover, even within the most devoted families, there are often disagreements about what best care requires for a person in need, or about who should shoulder which caregiving responsibilities. But despite all the challenges faced by and within families, the family remains the anchor of caregiving for most elderly persons, who age and die as members of families.

Family caregivers cannot care well in isolation, however. Without the support of community institutions and social programs, even the most devoted family caregivers often face burdens too great to be shouldered alone; they want to stand with their dependent loved ones, but they often cannot stand by themselves. Such community and social support can take many forms: government funded or faith-based "respite care" programs that give caregivers a needed rest; federal laws that protect caregivers who leave work temporarily to care for a dependent family member; state programs that support a flexible menu of long-term care options, including intermediate options like elder day-care and in-home nursing. Without the support of community and society, even the most devoted caregivers can break under the weight of their task, with all its physical, psychological, and economic demands. And even the most ethical caregivers can contemplate less-than-ethical actions, often out of understandable desperation.

Of course, every society is both imperfect and limited: it never treats everyone as well or as fairly as it should, and it must balance many civic goods and obligations. But in no small measure, the kind of society we are will be measured in the years ahead by how well (or how poorly) we care for those elderly persons who cannot care for themselves; by whether we support the caregivers who devote themselves to this noble task; and by whether we sustain a social world in which people age and die in humanly fitting ways-always cared for until the end, never abandoned in their days of greatest need.

This will require the creation and preservation of good caregiving institutions. We will need reliable and decent professional caregivers; humane design of long-term care institutions, preserving as much as possible some of the warmth and comfort of home; effective coordination of long-term care with hospitals, rehabilitation centers, and faith-based or spirit-sustaining communities. Building and preserving good institutions requires valuing those who make them good-not only the doctors who treat dementia patients, but also the nurses who provide daily care, the social workers who explain and coordinate services, and the nurse's aides who clean up after incontinent residents. Much caregiving involves hard physical work; it involves being sensitive to the needs of people who often cannot make themselves understood; it involves many tasks that individuals would not likely choose for themselves, even if they perform them with great equanimity. If we want good caregivers, we need to honor and reward caregiving, rather than seeing it as unskilled or undignified labor. This is a moral challenge as well as a social and economic one.

Good will and good character alone do not make willing caregivers into good caregivers, however. Competence also matters a great deal-not only for doctors, nurses, and other caregiving professionals, but also for volunteer family caregivers who must learn how to care well in matters small and large. It requires learning how to prevent bedsores; how to bathe frail and often resistant individuals without causing accidents; how to navigate the complicated and sometimes unsupportive health care bureaucracy; how to maintain important yet difficult daily routines.

Even in the best circumstances-with loving family members and competent doctors ready to care, with neighbors and community institutions ready to support caregivers, with ample resources in place to pay for needed care-we still face difficult decisions case-by-case, from individual to individual. And precisely because real-life situations often fall short of the ideal-with no intimates willing or able to care, with no money available to pay for care, and with overburdened professional caregivers incapable of attending to every patient's every need-we need ethical guidelines to protect those without advocates from being mistreated or forgotten.

Without question, the challenge of long-term care is social, economic, and medical: good caregiving is not possible without good social policies, adequate economic resources, and competent doctors and nurses who see caregiving as a vocation. But good care also-and perhaps first of all-requires seeing what the good for vulnerable patients really is, especially in the most difficult circumstances. Without some ethical compass to guide us, the effort to provide social and economic supports for caregiving will lack a clear foundation and guiding purpose. And unless we can learn to discern the humanly good or best possible in individual cases, we may lack the wisdom to develop the large-scale social programs and small-scale community supports that are surely necessary to sustain caregivers in their important work.

Of course, the best caregivers, both professionals and volunteers, do not "practice care" by engaging in the kind of searching ethical analysis that follows. They act largely on tacit moral beliefs and in light of experience, guided by love, or standards of professional practice, or great reservoirs of compassion and skill. Good caregivers often "muddle through" wisely, guided by the moral intuitions and moral compass that help them do the best they can for those entrusted to their care, often in circumstances of great difficulty. But it is also the case that such moral intuitions do not develop out of nowhere; they are shaped by the ethos of the society in which we live, by the general culture and specific guidelines that govern the practice of medicine, and by the role models who serve as our teachers and our guides.

It is precisely the novelty of our aging society and the gravity of the challenges it raises that may tempt us or force us to re-examine what we have long taken for granted about what we owe vulnerable patients-such as the fundamental belief that every person is "worthy of care." And although unearthing our foundational ethical principles for discussion is perhaps unnecessary and even dangerous in normal times, doing so becomes necessary when the norms themselves are called into question. It is precisely because caregivers are not saints that we need to ensure that certain moral boundaries are firmly in place and that the necessary freedom to act exists within a social world where certain kinds of actions are unthinkable because they are ethically out of bounds. And it is precisely because of the heartache that accompanies seeing those we love suffer the ravages of dementia that we need to guide compassion with ethical reason, so that our compassion does not unwittingly lead us astray.

One final, introductory note: In the discussion that follows, it is important to keep in mind the complicated relationship between the legal and the ethical. In many areas of life, we are legally free to do what we should not do, and we are not legally obligated to do what we should do. In a liberal society like ours, we tend to prohibit only the gravest evils and only those evils that directly compromise the rights of others; we aim to give individuals maximum possible freedom, under law, to make moral choices for themselves. This is as it should be, given the complexity and particularity of most moral choices and the grave evils that usually accompany excessive efforts by the state to dictate the personal lives of its citizens. But the wisdom of limited government does not mean that free choice is the only or highest moral aim of our society, or that public bodies, like this council, should remain silent or neutral on the most profound moral questions. As a society, our aim should be justice as well as freedom, and the pursuit of justice begins by trying to see clearly what we owe one another, including what we owe our most vulnerable members at the end of their lives. This is, to begin with, an ethical question-one seen most vividly as we contemplate what best care means in particular cases.

In seeing the limits of advance instruction directives, as we did in Chapter 2, we do not turn our backs on the partial usefulness of legal instruments or propose a legal revolution, though we can imagine small-scale changes in the law that might improve caregiving. But we do need to recognize that our existing procedures affect our moral sensibilities, by teaching us that self-determination is the primary value in need of defense, rather than instructing us in the solidarity necessary to make good decisions on behalf of those entrusted to our care. For this task, we need an ethics of caregiving, one that guides how we think about the law without offering any easy answers about what the best legal procedures might be or should be. Our focus in the next two chapters, therefore, is squarely on the ethical, and when we speak of aims, limits, and obligations, we do not speak directly to the issue of what should be promoted, limited, or required by law.

I. Defining the Subject

To think about ethics is to think about the goals we pursue for ourselves and others (the good); about the kind of actions we do (the right); and about the sort of people we hope to be (our character). Each of these aspects of ethics is important, and each makes its claim upon us.

In whatever we do, we should strive for worthy and estimable goods, evaluating our actions as better or worse means to achieve those goals. At the same time, we should assess our actions not only as means to desired ends, but also in terms of the character of the actions considered in themselves: their conformity to our moral duties that prescribe certain actions as obligatory, and their adherence to our moral norms that proscribe certain actions as wrong (even if performed in pursuit of true goods). In addition, we cannot discern rightly the goods we should seek or actions that are obligatory or forbidden unless we strive to become the sort of people who can see well and truly.

To think about growing old draws us into all three aspects of ethical thinking, especially when we consider the moral significance of dementia. We need to ponder the shape of a good life, and especially the relation between flourishing and decline within a good life. We need to think about right and wrong (or better and worse) ways to age, and especially our duties toward those who, even if they once cared for us, must now be almost entirely the recipients of our care. And we need to cultivate within ourselves and our society virtues such as courage, justice, and fidelity-courage as patients in facing the progressive loss of our powers, justice as caregivers in meeting the needs of those who can no longer reciprocate, fidelity in preserving the ties that bind us to one another, resisting the temptations of despair and abandonment.

To think about care is to think of how we care about others and care for others. We learn to care about others usually because others have cared about us-first in the family and then with friends and others among whom we live. We are marked by those near attachments and, therefore, we inevitably and properly care about some people more than others. Those special attachments are always limited, however, by our duty not to harm or do injustice even to strangers. Caring for others takes many forms, some quite simple and others very demanding. It surely includes medical care, but it is much broader than that. In particular, caring for those who suffer from dementia may mean helping in the activities of daily living, making treatment decisions on their behalf, or simply being humanly present in order to honor the dignity and meaning of the demented person's past and present life.

All caring for others, and certainly its most demanding forms, requires acts of giving. Most often in human life we both give and receive care-in ways too complicated ever to be perfectly reciprocal. Parents give care to their children in ways that can never be fully repaid; yet in most cases, they are happy to do so. Children "repay" the care they received only when they later give care to their own children. Yet increasingly in our world, adult children also are summoned to care for their aging parents. The cycle of giving and receiving from generation to generation comes full circle-not as the realization of a contract (which could never capture the complex reciprocities of family life) but in the mutuality and fidelity that are both goods we seek and virtues we hope to develop.

In certain respects the task of those who care for persons suffering from dementia is more demanding than that of parents raising children. For parental sacrifice is oriented toward developing and increasing the capacity of the child, a goal that brings meaning and fulfillment to the nurturing parents. But caring for those with dementia means selfless and uninterrupted giving in the face of irreversible decline. For many, this kind of sacrifice on behalf of needy persons at the end of their lives, however difficult, is also a source of great fulfillment. Providing long-term care sometimes yields concerted engagement among family members, improved recognition of priorities, genuine expressions of love, and in some cases a certain "completion" of the cycle of relationship and reconciliation. Such care is often, simply, good in itself, an expression of human beings at their best, standing with one another. But it is also true that in days of struggle, some caregivers may wonder whether sacrificing so much on behalf of such a diminished life is really "worth it," or even whether helping to sustain life in such a diminished state is really a benefit to the diminished person.

To think about this task is the ethical challenge facing our society, a responsibility which the Council hopes to help meet in offering this report. A first step, to which we now turn, is to think about the threefold human context of caregiving-about the worth of human lives, about the meaning of human deaths, and about the capacities and limits of modern medicine.

II. Human ContextS of Caregiving: Life, Death, and Modern Medicine

Caregiving is an activity that invites reflection about who we are as human beings-about how we live, how we die, and how we use medical knowledge and technique to sustain life and resist death. We can hardly do justice to such momentous subjects in the present report. But without some attention to these deeper human matters, it will be difficult-for both policymakers and actual or prospective caregivers-to think clearly and well about both the nature and the limits of caregiving in the coming decades.

A. The Worth of Human Lives

The increasing incidence of dementia is forcing-or inviting-us to think in particular about the meaning of human worth. What makes a diminished life worthy of our care, or worthy of life at all, or worth the resources society expends to sustain it?

These are not congenial questions, especially for a society rooted in ideas of the equal dignity and incalculable value of every human individual. Such questions are also foreign to the ethical outlooks of physicians and health care professionals, who are taught to devote themselves to the well-being of their patients regardless of their infirmities and disabilities. Indeed, they regard each patient as worthy of their ministrations simply and precisely by virtue of being in need of them. Patients have "worth" in the eyes of the doctor because they are human beings who have presented themselves as patients. Ethical medicine serves health and life, it does not judge life's quality-and certainly not as a criterion for treatment eligibility.

Nevertheless, public discussions today of end-of-life issues frequently speak of "quality of life," implying that certain "poor" qualities of life might disqualify one from a claim to treatment or from further prolongation of life. Questions about the worthiness of expending time and resources treating the severely disabled or demented patient seem increasingly tied to tacit-or sometimes explicit-judgments about the worth of the life being cared for. Like it or not, alien or not, we must take up this topic, if only to be better equipped to deal with public arguments that traffic casually in these grave matters.

In common parlance, we speak of the worth or worthiness of a human life in many different ways and with many different meanings. One way invites assessments of comparative worth. In the economic sense ("How much is he worth?"), different people are worth very different amounts, and the same person is worth different amounts at different stages of life. In organizations, some people are worth significantly more than others: for example, the League MVP (most valuable player) is worth more to a baseball team than a backup infielder, and so protecting the health of the MVP is a much higher priority. At the same time, the promising rookie with many good years ahead may be worth more than the all-star nearing retirement. Beyond economic and utilitarian considerations, many of us believe that some people live lives that are more admirable than others: the hero or statesman who defends his country (a Washington or Lincoln), the great poet, painter, composer, thinker, scientist, or inventor (a Shakespeare, Raphael, Mozart, Plato, Newton, or Edison), the devoted humanitarian (a Jane Addams or Mother Teresa), and, on a less grand scale, people we know in everyday life whom we admire for their character, accomplishments, or contributions to the community.

In these respects, human worth can be both variable among persons and changeable over time. In happy times, one's life seems to be worth more. In terrible times, we might wonder whether being alive is really worth it.

And yet, even as we make such comparative judgments, we also affirm another, non-comparative, way of speaking about the worth of human lives, based on the recognition of what all human beings have in common. For if we make human worth depend entirely on those roles or capacities or accomplishments that some people find worthy, or on the changing feelings and perceptions of the moment, we risk ignoring or denying a more basic human worthiness to which we are committed. If we value only the great ones, we do an injustice to the dignity of ordinary human beings, ourselves included. If we value only those whose potential is still open to be fulfilled, we risk dishonoring those whose potential has largely already been fulfilled. If we value someone solely because of the powers he now has, we risk abandoning him when those powers are gone. In some areas of life-like professional sports-it makes perfect sense to put individuals "on waivers" when their talents dry up. But in other contexts-like basic human rights or decent medical care-valuing only the healthy, wealthy, or competent seems to deny the worth that all individuals possess equally, simply by virtue of our shared humanity.

When thinking about human worth in the caregiving context, we have at least four fundamental principles that might guide us: autonomy, where one's worth is manifested in one's power to choose and determined entirely by one's own judgment; utility, where one's worth depends entirely on one's usefulness to oneself or others; quality, where one's worth depends on possessing or exercising certain humanly fitting, admirable, or enjoyable traits and capacities; and equality, where every human being possesses an equal and intrinsic worth simply by being part of the human community.

Each of these perspectives may be useful for certain purposes and in certain circumstances. But in matters regarding life, death, and basic rights, the most basic commitment of our society is and has been to human equality. In a society "dedicated to the proposition that all men are created equal," we must ensure that we do not allow the genuine inequalities of human capacities and human character to blind us to the equal humanity of all human beings. In part, our equality arises out of our shared vulnerability. We are all vulnerable to the deprivations of illness or injury and to the limitation of mortality, and thus we all have a personal interest in ensuring that needy persons are treated equally and adequately.

But our commitment to equality is more than simply calculating; it is more than a future's contract in human care, purchased by the healthy to insure against the contingency of biological misfortune or the inevitability of decline. Rather, the commitment to equal human worth stands as the basis of a welcoming community-one that assures all living human beings, even those in a disabled or diminished state, that their lives still have meaning, worth, and value for all of us. It assures them that we would not prefer them dead even if we would like to see an end to the suffering that marks their present condition.

Those with advanced dementia test our commitment to human equality. They force us to ponder whether treating people equally is always the best way to treat them well or the most fitting way to give them their due. We wonder about those who cannot enjoy even the most basic physical pleasures; or those who lack even minimal consciousness; or those whose lives are marked by the permanent loss of self-control and the constant need of sedation, with death looming and no hope of recovery. Surely, no one, given alternatives, would choose such a life for himself. We may sometimes wonder whether such a life is "useful" to oneself or to others. We may be unable to find in such lives the "qualities" we most value. And we may suppose that any "autonomous" person should be able to decide ahead of time whether to continue living in such a state. Even if equality grounds our ultimate obligations to such persons, it does not always seem to accord with our experience of being with and caring for them, or replace the lived sense that human beings in such a diminished state have lost much that is humanly worthy.

In crucial respects, therefore, the "ethic of equality" (valuing all human beings in light of their common humanity) exists in deep tension with the "ethic of utility" (measuring lives by what they are worth to oneself or others), with the "ethic of quality" (valuing life when it embodies certain humanly fitting characteristics or enables certain humanly satisfying experiences), and with the "ethic of autonomy" (valuing each person's freedom to decide what sort of life has worth for us as individuals). If the worth of a human life depends entirely on a person's utility, then some lives are clearly more valuable than others: we need workers, soldiers, leaders, and doers, and we rightly admire people who achieve great things or produce the means of their own subsistence. If the worth of a human life depends upon the presence of certain uniquely human qualities (such as, for example, memory, understanding, and self-command), then we may judge that some lives never had such worth and others (such as those with advanced dementia) no longer do. If the worth of a human life depends on one's "autonomous" assessment of self-worth, then clearly some lives will be judged to have little worth, and other lives (such as those incapable of autonomous choice) may seem to lack human worth altogether.

Against these dangerous and erroneous temptations, the "ethic of equality" defends the floor of human dignity, ensuring that even the most diminished among us is not denied the respect and care that all human beings are owed. The Council embraces this teaching as the first principle of ethical caregiving. Yet, in some respects, equality will always stand in tension with what may seem to mark the height of human dignity: the qualities that distinguish our humanity, that make us useful to others, and that we freely choose and affirm for ourselves. That tension will always mark our thinking about the process of aging and the ravages of dementia.

In the face of these tensions, it may often be difficult to know how to honor properly the several strands and claims of human dignity and human worth. Consider, for example, a virtuoso violinist whose mother gets Alzheimer's disease, whose musical calling must now compete with long days of caregiving, her pursuit of human excellence in conflict with the demands of human neediness. How does she strike the right balance between her two callings? And how do we honor the virtuoso herself when she gets dementia and her treasured capacities disappear? We do not doubt for a moment that the virtuoso with dementia remains a full member of the human community, equally worthy of human care. But this hardly settles what it means to care for her well, or what it means to defend her dignity when her special qualities are fading or gone. For all people-and perhaps most vividly for those who once stood high above the ordinary-the regression to dementia and incompetence, with all its accompanying indignities and loss of self-command, may seem dehumanizing and humiliating; and extending life in such a condition may seem like a cruel mockery of the person's former stature.

In every human being, dementia erodes many estimable and beloved human qualities, gradually eliminating the things that make one's life truly lovable. It makes each human being less than what he or she once was, even if we rightly see that the diminished person still retains his fundamental and equal human worth and is still equally worthy of human care-and perhaps more worthy of care because his or her dependence is so complete. Yet even as we cling proudly to those powers that once defined us, we must also humbly remember that we possess those powers not simply because we merited them, and never in perpetuity. Although the desire to die with as much dignity as one has displayed while living is understandable and even admirable, it fails to appreciate the human surrender that death unavoidably brings to us all.

In modern societies-and perhaps in every age-we are prone to two kinds of extremes in thinking about the meaning of death: The first is believing that death is the worst thing possible and the greatest evil, to be opposed by any means and at all costs. The second is holding that death is "no big deal," that it is simply a natural part of life.ⁱ To think of death as the greatest evil tempts us to do great harm in the cause of overcoming it and seduces us with the belief that human beings ought to conquer death by human will and oppose it always by human effort. But to think of human death as simply natural ignores the dreadful reality: the earthly extinction of a human soul, the erasure of a unique person with a never-to-be-repeated life. And it ignores how consciousness of mortality distinguishes human beings from the other animals for whom death cannot be more than "merely natural," and how this self-consciousness contributes to our being persons with interests, aspirations, and longings.

Perhaps the first thing we realize about death is its inevitability: everyone dies, and knows it. Death is the event that announces our ultimate limitations, our lack of mastery over embodied life, our final need to learn how to surrender ourselves or surrender with-and-for those entrusted to our care. To be sure, we can and do exert some control over the circumstances of our death: by the healthy or unhealthy choices we make throughout life; by our chosen vocations and avocations; by how we act in moments of danger or crisis; and by the choices we make about the use (or non-use) of medical interventions. But such decisions and actions rarely ensure a particular moment of death, even if they make a certain type of death more likely or more imminent. The only way to assert perfect control over the time and manner of one's death is by suicide-which embraces oblivion in the quest to assert one's mastery, often in the face of misery and anguish we cannot escape or control.

Although death is never a "good" in itself-even if good things, such as the end of terrible suffering or (in the belief of many) a passage to heaven, may accompany its arrival-it is surely possible to speak of "better" and "worse" ways to die. Many types of death are undesirable; they are ways and times of dying we would all avoid for ourselves and never wish for our loved ones: The young child killed in a car crash or dying of leukemia (an untimely death); the person captured, tortured, and beheaded (a lonely, brutal, and humiliating death); death after a long period of excruciating physical suffering (a prolonged and painful death). Yet, there may be times when the only way to avoid such an undesirable death-say, by betraying one's comrades or taking one's own life-seems equally or even more horrible.

There are also ways of dying that are humanly ambiguous. Consider, for example, a very old man who dies swiftly and suddenly of a heart attack. We do not call his death untimely, even if it was unexpected. Perhaps he was ready to die, and perhaps he always hoped to avoid a long, painful decline into debility and dementia. Yet such a death might also deny a dying person the chance to say his final goodbyes, to reconcile himself to his own demise, to put his affairs in order, and to die in the company of those who love him and will remember him. And it might deny those loved ones the same last chances-to say goodbye, to reconcile, to be there at the very end. Such a death, while swift, is denied one final twilight.

Consider, as a second example, a young fireman who dies rescuing a child from a burning building. Such a death is surely untimely, in that the person may leave behind a young wife or young children, or perhaps never lived long enough to have children who will follow him. In every sense, to die so young is to be a life cut short. Yet such a death-and more importantly, such a life-is marked by nobility; it spurs the moral imagination of those who remember the person who died; it is, in every sense, an admirable and noble death, if not a death most people want for themselves.

Death at the end of long-term debility and dementia is an especially complicated case. Most people who die of Alzheimer's disease, for example, have been blessed with a full life; they have avoided untimely or sudden death; they have lived to see children and grandchildren born, or careers pursued, or wealth accumulated. But such a death also entails certain special burdens for the dying person-at first, the burdens of looking ahead to a period of lost self-awareness; throughout, the burdens of living in a condition of growing, and ultimately total, dependence. Looking ahead, one might foresee one's own children or spouse changing soiled garments; or fear hurting the grandchildren's feelings by not remembering shared experiences; or making inappropriate comments at inappropriate times; or causing long days of struggle for the people one loves most, without the privilege or possibility of sacrificing one's own good on their behalf. And one must eventually live through the burdens of dementia itself-from the terror of treatments one does not understand to the disorientation of being moved from one's home to the nursing home to the hospital. When death finally comes for those with advanced dementia, they are no longer fully aware of the self whose life is being surrendered. Perhaps they can no longer fear or hate death in the way a self-conscious person often does, and so they can die more peacefully. But this absence of awareness might also be seen as a deprivation, for it denies individuals the chance to face death frontally, with the dignity that requires an awareness of death's coming.

Appalled or terrified by such prospects, and refusing while still in self-command to submit themselves to what nature has in store for them, some people may be tempted to orchestrate the time and manner of their dying, by rejecting all medical care or even electing suicide here and now. In a discussion of the ethics of caregiving, ethical arguments about suicide-as opposed to ethical arguments about euthanasia-are largely beside the point,ⁱⁱ and a full discussion here is neither necessary nor possible. But because both of these subjects-taking one's own life and caring for others-relate in some measure to judgments about human worth and our understanding of human mortality, we offer a few observations about the meaning of suicide that are especially germane to thinking about caregiving in relation to death.

In some cases, suicide is a deliberate choice against the need to be cared for by others; it is a self-conscious choice against becoming dependent. In other cases, suicide is a desperate act of loneliness or isolation, taken by those who fear that no one will be present to care for them; it is a self-conscious choice against being abandoned. Suicide can be motivated by the desire to live only if one can stand alone, or by the desire to die because one fears standing alone.

Yet to be human is, inevitably, to exist in community with others. None of us becomes a self on our own, and our lives are connected in countless rich and complicated ways with the lives of others; from birth to burial, we depend on and are attended to by others, and we touch others' lives in deep and often mysterious ways, even in our days of decline and dependence. Hence, to take one's life is to take part of others' as well-sometimes deliberately, sometimes knowingly, sometimes (paradoxically) out of fear that others will want no part of us. Yet there is no reason for loving caregivers to tolerate or embrace such a desperate act of rejection, only a greater reason to affirm the bonds of fidelity and care that give individuals the needed strength to face whatever life has in store for them.

However understandable the motive, to seek death by human self-destruction seems to misunderstand the limits of human will. Orchestrating the precise manner of our dying seems like one last attempt at control and mastery-at the very time when, paradoxically, aging and dying are announcing to us the limits of our control and mastery. It invites us to pretend that we can entirely transcend the uncertainties of nature and the limits of our finitude. It blinds us to the sad truth-but a truth with which a life humanly lived must come to terms-that aging announces what death means: the limits of the autonomous self, limits visible both in the corpse we become and in the pain of those who must bury it.

These humbling reminders notwithstanding, caregivers for persons with dementia will unavoidably exert some measure of control over the time, manner, and circumstances of the person's death, whether by action or inaction. With numerous life-and-death decisions now foisted upon us as caregivers, it is less and less possible just to live and care well, letting death "take care of itself." This grave responsibility for others is often wrenching, leaving caregivers to wonder what truly loving care requires: Do we benefit or harm the person by extending a life that is terribly painful? Do we benefit or harm a person by extending a life that the person himself might have found undignified? Do we benefit or harm a person by extending a life that burdens the very people the person loved most? On the one hand, we might believe that there is a better way for a person entrusted to our care to die, and fear that extending his life is only making a worse death more likely in the future. On the other hand, we should recognize that caring for another entails certain obligations, including (as we discuss more fully below) the obligation not to seize an occasion for the person's death, and the obligation never to allow our own desire for relief from caregiving to corrupt our sense of what it means to benefit the (even minimal) life the person still has.

In the age of modern medicine, how we die also depends on how we use medical interventions-both for ourselves and for others. The advance of medicine allows us to hold off death in more ways than ever before, and, in doing so, it makes certain kinds of death or patterns of dying more common. Of course, chance still has a large say in the manner of our "going hence"-both for better and for worse. Nature (or fate or chance) robs human beings of life with no rhyme or reason; it sometimes robs the young of a ripe old age or robs the old of the final chance to say goodbye. But human life also seems to have a natural shape: the ascent of the child, the maturity into adulthood, the raising of one's own young, and the coming of death in the cycle of the generations. One question we face is whether the technological powers that enable us to resist the inhospitalities of nature have also introduced new dilemmas or even deformations into the natural course of human life, especially regarding how we die.

A peaceful death in a ripe old age is widely regarded as the human ideal. "Gathered to his kin, old and sated with years," is the biblical description of the death of the patriarch Isaac. And Xenophon described the good death as follows:

The question we face is whether modern medicine, by coming so readily and heroically to our aid, has made such a tranquil and timely death less likely, and, by intervening against the "gentlest of deaths," has increased the likelihood of an "unseemly or discomfortable" decline.

The benefits of modern medicine are obviously too varied and too significant to delineate fully here: the dramatic reduction of infant mortality; the near-eradication of infectious diseases such as polio and tuberculosis; new strategies for preventing early and sudden causes of death such as heart disease; vast improvements in the management of pain; and, in general, a longer and better quality of life for many people into their sixties, seventies, eighties, and beyond. Thanks to modern medicine, old age has become the social norm, rather than the rare exception-and for this gift, among others, we should surely be grateful. Those of us fortunate enough to live in the age of modern medicine probably cannot fully imagine the miseries of life without it, and what it meant to be so fully at the mercy of errant nature, or what it meant to become sick without understanding the biological cause of one's symptoms.

But as we discussed in Chapter 1, new technologies also create new dilemmas, and some of the effects of modern medicine on the trajectory of life and death are more ambiguous in their human significance. Because earlier, swifter causes of death are more frequently held at bay-a great good in itself-more individuals live long enough to suffer long-term debility, decline, and dementia. Death from sudden illness is now the exception; death following lengthy chronic illness is now the rule. A vast menu of medical machines and novel therapies can keep individuals alive for longer stretches in old age, but not necessarily make them well again, either in body or in mind. In addition, because of our reliance on modern medicine-and the constant hope that nature's final blow can be averted-the vast majority of individuals now die not at home but in hospitals or other professionalized health care settings, institutions whose animating spirit is to resist death and delay its arrival rather than to teach people how to face death with as much serenity and courage as the dying individual and his loved ones can muster.

Looking ahead to an age in which dementia will likely become more prevalent, some wonder whether modern medicine has deformed the natural shape of life by preventing death in the proper season. Those causes of death that once might have been seen as merciful and timely endings to a life "ripe with age" can now commonly be defeated by medical intervention, often prolonging lives marked by great physical suffering, emotional despair, and utter debility. In 1898, for example, Dr. William Osler wrote that, "Pneumonia may well be called the friend of the aged. Taken off by it in an acute, short, not often painful illness, the old man escapes these cold gradations of decay so distressing to himself and to his friends."^²

But today, we can often defeat pneumonia and other ailments that afflict the afflicted, and we can prevent the "acute, short, not often painful" death that these ailments once delivered. As the possessors of this medical power, we face a number of questions with no easy answers: Does curing pneumonia or other ailments for an elderly, debilitated, suffering person really benefit the person? Are there cases when pneumonia is in fact "the friend of the aged," such that curing pneumonia is not a form of care but an acquiescence in or imposition of future degradation? Does the power to cure pneumonia-without imposing new burdens in the act of treatment-create a moral obligation to do so?

The doctors and scientists who have brought us such welcome medical benefits did not, of course, intend to cause us these dilemmas; their goal remains a full life for all, lived to the natural end free of disability. But although medical progress is always made by human beings, the human makers themselves do not fully control its exact direction, or the ways new medical powers can affect the shape of human life. For example, it may be that our capacity to prevent or correct various types of organ failure will one day allow us to sustain the human body for much longer than we do now, without reversing severe cognitive decline from age-related dementia. For a disease like Alzheimer's, we may discover ways to radically extend the middle-stage, where the disabling cognitive and affective aspects of dementia have already arrived but the total breakdown of the body has not yet begun. Many of these interventions may work without burdening the patient in the act of treatment. But are these interventions necessarily good for the person entrusted to our care, and do we have a moral obligation to use them?

As devoted caregivers, we do not want to refuse or cease treatment so that the person will die, and we do not want to abandon care by excluding our patients or loved ones with dementia from the medical benefits enjoyed by the wider community. Yet we must also wonder whether repeated interventions to rescue the patient, yielding him years or decades of incontinence, minimal consciousness, and constant neediness, is really a human benefit and therefore a human obligation. At some point, we might be tempted to ask whether continued treatment seems more cruel than caring, not love but betrayal, a way of perpetuating degradation at the hands of merciless nature rather than benefiting a diminished but still worthy human life.

How we think about such questions depends largely on how we think about the character and limits of human agency, both in general and especially at the end of life. Although death surely announces the ultimate limits of human mastery, human beings will often exert considerable control over the shape of dying, both for themselves and for others. Intervention and non-intervention are both acts of orchestration, whether the aim is to extend life, to hasten death, or to relieve or prevent suffering. Of course, this power of orchestration is always limited by the inevitability of death and the unpredictability of even a well-studied and well-understood human biology. But in the end, we cannot avoid the responsibility to shape the life-course of those entrusted to our care, which is why we need some reliable moral guidelines for deciding when, how, and why to intervene or not intervene with the medical art. (We will consider these moral guidelines below.)

As providers of medical care for those who are aging, suffering, and nearing death, we must aim to cure when we can, but also recognize that in many cases cure in any strong sense is no longer possible. Medicine, which is ethically committed to cure when possible, is also committed always to comfort and always to care. Our duty is never to abandon those who are aging and dying-even and especially when, diminished by dementia, they are dependent on commitments they can no longer ask or demand of us. It is this obligation-not to betray or abandon those in our care-that is the most fundamental commitment of physicians, nurses, and all of us who participate with them in deciding how best to serve the well-being of those with diminished capacities. We betray them if, even with the best of intentions, we subject them to treatments that cannot benefit them or that burden them. We abandon them if, even with the best of intentions, we do not do what we can to benefit the life they still have.

Of course, this fundamental commitment not to abandon those who are ours to care for does not answer all the difficult questions we face. If it did, we would have no need to speak of the art of medicine and, thus, the need for discernment and prudent judgment. For example, medical ethics has generally held that withholding or withdrawing medical treatment is permissible only when that treatment yields no benefit or when it burdens a patient excessively; yet this restriction may seem less than fully satisfactory in the face of hard cases.

Imagine the case of an elderly person in constant terrible pain who contracts an ailment that is easily treated but deadly if ignored. As caregivers, we face a choice between prolonging the painful life, sedating the person constantly, or letting a patient die who may not otherwise have to die soon. None of these choices seems obviously best or especially satisfying. This hardly means that our choices were better when our medical powers were more limited: surely we can control pain much better now, and surely some might argue that life in pain or under heavy sedation is still better than death. But it suggests that sometimes life-sustaining interventions are morally ambivalent, even in situations where denying their use seems morally questionable. (We will examine this dilemma more fully in the next chapter, when we consider some cases in detail.)

Modern medical advance also raises a challenge to the traditional ethical principle regarding forgoing life-sustaining treatment. If the only morally permissible criteria for forgoing life-sustaining medical treatment is that the treatment itself is burdensome or ineffectual, then every affordable treatment that meets these criteria becomes a moral obligation. Every medical invention of such a sort creates a new moral duty-regardless of how the invention seems to affect the trajectory of life and death, and regardless of whether it seems to serve or undermine our considered understanding of what would be a more or less humanly fitting way to live and die. By such criteria, we seem, to some degree, bound by technological inventions that may not always serve what seems like the human good. And we often leave ourselves with a range of morally and humanly unsatisfying choices.

What we face here is a particularly poignant instance of the dilemmas modern technological advance brings to many areas of life. The combination of new medical powers (such as curing pneumonia with ease) and lasting moral duties (such as never withholding effective and non-burdensome treatments from patients who are not already irretrievably dying) may create a situation in which progress constrains human choice as much as it expands it. As caregivers, we are surely not responsible for the burdens of disease or the pain of ailments that we cannot ameliorate. We are not responsible for the burdens of nature that we cannot fully control. But we are responsible for the use of man-made medical powers, and it is this responsibility that creates the most puzzling ethical dilemmas-especially when sustaining another person's life means extending a life marked by great pain and worsening deprivation.

Modern medicine, although greatly blessing and enhancing our lives, has also sometimes made it harder to know how best and truly to care for those with diminished capacities and for those living with serious and eventually fatal illness. Often, we have the medical capacity to extend life or delay death but without the moral capacity to know that doing so is really a benefit to the person who needs us to speak and act on his behalf. This is, in a profound sense, the caregiver's dilemma: a successful but always limited medical art, a progressive disease that erodes the mind on the way to disintegrating the whole person, moral uncertainty about how best to care. The rest of this chapter addresses the caregiver's dilemma: it offers ethical analysis and guidance regarding the ends and means of caregiving, with special attention to decisions regarding medical treatments for patients with dementia who get sick in other ways.

III. The Ethics of Caregiving

For a variety of reasons, national discussions about aging, dying, and caregiving have focused largely on "end-of-life issues," on those dilemmas that bring life, quite literally, to a point: Should we treat this deadly ailment? Should we discontinue this life-sustaining intervention? Is it ever permissible to take active measures to end a life, either with or without the person's consent? These questions are crucially important, and we shall address them in the discussion that follows. But we must also remember that caregiving involves not only those moments when life comes to a point, or only those decisions regarding the use of medical interventions to sustain or end life. Caregiving, especially for persons with debilitating illnesses like dementia, involves much more the daily activities of being there for the person in need: protecting them from harm, managing their affairs, comforting them in dark times, feeding and bathing them and changing their soiled garments, and deciding when best care requires placing them in a long-term care institution to be cared for constantly by others.

The decisions we make when a person's life does come to a point will be shaped by the manner of caregiving that brought us to that point. For even though most caregiving decisions are not immediately matters of life and death, caregiving always embodies tacit judgments about the worth of the person entrusted to our care and always displays the character of the caregivers. Caregiving always involves thinking about what we owe to those who need us to speak for them and stand with them, precisely when they can no longer speak for themselves or stand alone. Our ability to fulfill these obligations-not just heroically in times of crisis, but mundanely and regularly on a daily basis-will make the decisive difference in the everyday life of those for whom we care.

We will keep these broader considerations in mind as we now focus on the ethics of caregiving in the clinical context. Our exploration proceeds in three basic parts. First, we consider the positive goals that caregivers might serve-moving from respect for the person's prior wishes, to the well-being of the family, to the good of the larger society, and finally-and most importantly-to the "best care" of the person now present. Second, we consider some moral principles and moral boundaries that should guide and constrain caregivers, as they try to serve that goal. As we shall indicate, the ability to pursue the "best care possible" depends on erecting such boundaries, both against unethical options and (even more) against our weaknesses as caregivers, especially as we care for persons who try our patience and test our ability to serve them wholeheartedly. Third, in the next chapter, we consider how loving prudence might function in a series of concrete and difficult cases. In other words: ethical caregiving involves the pursuit and promotion of good; the protection against ill; and prudence in judgment, here and now.

A further word is needed about prudence, a central notion in our account. In everyday speech we sometimes call "prudent" those decisions or actions that compromise to some extent what is good or just. Prudence is sometimes seen as mere compromise or cleverness, or as settling for something less than the truly good or morally required. In our moral tradition, however, prudence is a high virtue, in no way opposed to justice or goodness. On the contrary, prudence is that excellence of heart and mind that enables us to see deeply and wisely into the truth of things-deeply enough to discern the goods that are present, wisely enough to identify the best means available for pursuing those goods, without violating the norms of right and justice. Thus, prudent human caretakers seek to discern concretely the patients' good, here and now, and in doing so, they also observe the boundaries that justice imposes on us.

As we will see, the obligation to seek the best care possible hardly means that there is an easy answer in every case, or that there is a single best decision in every situation. In circumstances that admit of no happy options, morally conscientious caregivers may disagree as to which course of action is least harmful to the patient. But a commitment to seek the best care possible under the circumstances will help ensure that some kinds of decisions or approaches to decision-making will remain morally off-limits, because they are antithetical to care itself. The pursuit of best care both guides and constrains us as we seek the good (or best possible) in hard, often tragic circumstances.

As we noted in the last chapter, the guiding principle of the current legal arrangements governing caregiving for persons with dementia is the obligation to respect the wishes of the competent person the patient once was-what some scholars have called "precedent autonomy."^³ At the extreme, this idea seems to imply that only competent individuals command respect as persons, and, more subtly, that all individuals with dementia are objectively less worthy of care than they were when they were cognitively healthy; or it suggests, at the very least, that there is no obligation to consider their best interests as they are, here and now. But mainly, "precedent autonomy" means that all individuals should have the freedom to decide for themselves, while they are still competent, whether (later) life with dementia would have any meaning or dignity for them, and what kinds of treatment should be pursued or rejected on their behalf.

There is, as we have seen in Chapter 2, a partial wisdom in this approach: It aims to honor the distinctness of each individual as a person with a unique and continuous life-history, and it seeks to maintain a connection between the person one was when fully self-aware and the person one might become (or now is) with dementia. It acknowledges each person's claim to self-determination, sets some limits on the types of decisions caregivers can make on behalf of voiceless persons, and protects them against the dangers of unwanted under-treatment or over-treatment. It also offers some direction and protection to future caregivers, who might tremble at the prospect of deciding the fate of a loved one without any guidance, or fear ever "letting go" without some formal permission to do so. For all these reasons, it makes sense to suggest that one of the goals of caregiving is to honor the prior wishes of persons who are no longer able to make their wishes known.

But as we have also seen, respect for the wishes and values of the competent person once present is often an insufficient or poor guide for caregivers in the clinical setting. In many cases, the person's prior wishes are simply not clear or not known. Many people cannot fully envision what they would want in a situation they have never experienced or imagined; they cannot speak for a self that does not yet exist; or they do not wish to confront the prospect of dementia and debility while still in their prime. The moral scope of past wishes is also limited, because a person's interests can change over time and change dramatically with dementia.

More broadly, as discussed above, self-determination has intrinsic limits in a civilized and decent society. Even if the law allows it, there are strong moral reasons not to aim at our own death or to ask others to help end our lives by willful acts. Even a competent person's wishes should be limited by such moral boundaries and considerations, because sometimes one's own wishes do an injustice to the value of one's own life, or to the concerns of one's loved ones, or to the norms of the broader society. Our lives are intertwined with others, who are affected powerfully by our choices, and who are themselves conscience-bound moral agents. Our caregivers are not obligated to execute our wishes if those wishes seem morally misguided, nor obligated to enter into contracts that require them to violate important moral precepts that are binding on everyone.

In life as actually lived, the burdens of decision always happen here and now, in circumstances that past directives, written then and there, cannot always imagine. These decisions fall on caregivers and surrogate decisionmakers, who experience the loved one with dementia as they are now. These caregivers are no doubt saddened by the capacities that are gone, but they are also bound to the person still present, who is more to them than a breathing corpse and an inherited set of instructions. Caregivers need to consider the incapacitated person's present needs and satisfactions, not only the once-competent person's past wishes; and they are summoned to make decisions not only for the self that exists in memory, but also (and especially) for the self that exists now in embodied reality.

This does not mean that the character or wishes of the individual before the onset of dementia should be treated as irrelevant in deciding how to care for the person she now is: to treat the personal past as irrelevant would deny the continuous life trajectory of the individual; it would deny, in a different way, the reality of the embodied self. The caregiver should always strive to honor the ideals a person with dementia once self-consciously held even though self-awareness is now largely or entirely gone, and to honor her past wishes and past character without transgressing certain firm moral boundaries.^iv This requires, in the end, that we look also to aims and obligations beyond respecting precedent autonomy in making decisions for the incapacitated person now entrusted to our care.

Primary (non-professional) caregivers and recipients of care are most often members of families, linked by bonds of affection and obligation (and sometimes affected, too, by the frustrations and resentments that often develop in family life).^v In giving care to an especially needy family member, caregivers understandably and rightly worry also about the well-being of the family as a whole. A caregiving spouse, for example, might think about how continued care for a husband or wife with dementia affects the well-being of children and grandchildren. And a caregiving adult child might think about the good of her own family, and how the obligations of caring for an aging parent in her home will affect her ability to care for a growing child.

One approach to aiming at the good of the family might be strictly utilitarian, weighing the costs and benefits of sustaining a dependent person's life for everyone in the family: Does the living presence of a parent or grandparent, in his or her current condition of dementia, give more joy than heartache? Is the cost of care to the family compensated by the continued life that this expense makes possible? And when does this cost-benefit calculus change?

But such narrow utilitarianism seems out of step with our society's moral understanding of family life. Central to our ideals of family life are the bonds of fidelity it entails, both for better and for worse. We do not (or should not) enter into and out of families like contracts, where the only purpose is our maximum pleasure or advantage. Rather, we aspire to live in and through families-as parents, children, siblings, spouses, grandparents-in a spirit of unconditional mutuality, recognizing that just as others care for us, we may one day care for them, and recognizing that mutuality is not always the same as reciprocity: in families, we must sometimes give more than we seem to get. By reducing an individual family member simply to a source of benefit or pleasure for other family members, we risk undermining the very idea of the family that such a utilitarian calculus supposedly aims to promote. In the name of family happiness, we risk undercutting family fidelity and loyalty altogether.

Without question, family life is often hard and imperfect and, for some, a source of pain more than strength, heartache more than joy. But the suffering many people endure within families-especially the experience of feeling abandoned or betrayed-does not justify denying what family can be at its best or what people might reasonably aspire to in family life. And it does not require giving up the hope that some families in trouble can reconcile and renew the ties that bind, and with it the willingness to stand with those fellow family members in need.

But even within affirmed bonds of fidelity and mutuality, matters are rarely simple. A caregiver might ask how her father, always a good provider, would now seek-if he could-to benefit the family, even in his dependent and cognitively disabled state. A caregiving husband might be troubled by seeing his afflicted wife become so utterly reduced before the aging couple's children and grandchildren, and wonder what such long-term changes mean for the reverence and respect at the heart of family life. A caregiver might struggle with finding the proper balance between caring for her parents and rearing her children, and ask whether a particular ailment at a late stage of dementia is nature's way of restoring the balance, to be accepted rather than opposed. Or a caregiver might recognize the moral gift to her children of seeing firsthand what it means to care for an elderly person, what it means to love another in the gravest need, and what it means to appreciate the blessings of health in the face of disease and death.

There is no doubt that caring for a person with dementia imposes real burdens on the caregiving family-on the old, the middle-aged, and the young alike. But it is not always so easy to discern the meaning of those burdens, or to envision what would happen to the family bond if the old were left to die in the name of the young and promising, or the weak left to die in the name of the strong and flourishing.

Most individuals, when making decisions at the bedside about how to care for loved ones, do not decide what is best here-and-now by thinking about what is best for the whole society in general. But as we have noted, family members are rarely the only actors in this drama: there are the doctors, hospitals, and nursing homes who make recommendations about best care; there are insurance companies and governments that pay a large fraction of health care and long-term care costs for the elderly and that decide what they will pay for; there is the larger polity that must weigh these goods against other civic goods; and there are the fundamental values of society, such as nurturing the young, securing the equal rights of all, and protecting the vulnerable from harm. Thus, although individuals may not aim at the good of society in making decisions, society as a whole establishes conditions that powerfully influence and constrain those decisions-including the influence of law and culture on the ethical intuitions of the individuals who bear the responsibility of care.

Just as families face hard economic decisions and trade-offs, so too does the larger community. Wealthy societies may be able to build both nursing homes and nursery schools, but even the wealthiest societies cannot do everything imaginable for everyone; they cannot maximize the well-being of all individuals all of the time. Yet how our society deals with these hard choices will both reflect and shape our character, both for better and for worse. What kind of society would we be if we left the elderly with dementia (and their families) to fend wholly for themselves? But what kind of society would we be if public subsidies for long-term care or heroic medical interventions for the elderly were financed by drastic cuts in educating the young or securing the peace?

To the broad question of society's "contract" with the elderly, one can envision a broad range of answers regarding their medical care. Some might argue that society should enact certain mandatory standards for non-treatment or public rationing, on the grounds that we should not divert valuable health care resources to care for those with a "low quality of life" and little time left. Others might argue that, because respect for the equal dignity and worth of all persons is a central value of our democratic society, we must ensure that this value is publicly affirmed rather than undermined by age-based or capacity-based rationing of health care. Still others might argue that we should change our priorities for the elderly, shifting resources from heroic measures of emergency rescue to support daily programs such as Meals on Wheels and in-home care.^⁴ Finally, some might argue that the best way for society to deal with such ethically fraught matters is through a procedural solution-allowing individuals and families maximum possible freedom to decide what is best for themselves, while preserving tolerance for different worldviews and civic peace within society as a whole.

There is surely a partial wisdom in seeking to set social limits on treatment, say by deciding as a society what medical procedures we will not publicly fund for those nearing death. This policy faces up to the reality of mortality, the passing of the generations, the limits on our resources, and the interconnectedness of all social goods. It acknowledges the potential danger of neglecting the young in caring for elderly persons entering upon a long "second childhood." But rationing resources for debilitated or demented persons risks dehumanizing them-by treating them as public burdens, as non-members of society, whose claim on us is limited by their very weakness and dependence. Such a policy might directly or indirectly impose death as "the best treatment" even in cases where a simple medical intervention would benefit the life a person with dementia still has. It might unjustly burden the poor, by excluding certain treatments from Medicare or Medicaid coverage that the wealthy could purchase with private funds. Or it might perversely alter the role of the state, by making certain therapies illegal across the board for certain classes of patients, rich and poor alike.

Of course, as a society we need to reflect on how to set limits, lest we allow the urgency of life-and-death medicine for the elderly to always trump the seemingly less urgent but no less important obligations and aspirations of society as a whole. In the face of limited resources, growing needs for ever-more-expensive long-term care, and the dwindling ranks of voluntary caregivers, we will be unable to escape difficult choices in setting priorities. But the effort to set limits can also lead to some socially pernicious results, separating citizens, by state mandate, into the eligible and the ineligible, the "still worthy" and the "no longer worth it."

There is also a partial wisdom in seeking a procedural solution, one that leaves caregiving decisions as much as possible to individual families. And yet, as discussed above, a policy of autonomy without limits offers little guidance to patients and caregivers about how to exercise their freedom. And it fails to confront the potentially dehumanizing excesses of autonomy itself-including the possibility of seeing one's own life as less valuable than it truly is. Moreover, a policy built on self-determination alone offers little guidance about what society owes its dependent members, and what its dependent members owe society.

What we discern, in the end, is that setting social policy in this area is no easy task, especially as it bears on individual cases at the bedside, where prudent judgment about the particulars is always needed. The principle that persons with dementia possess human dignity equal to non-demented persons provides an essential moral foundation for a caring and caregiving society. It means that individual caregivers and public policymakers should not see the disability of dementia by itself as a reason for discrimination or as legitimate grounds for the denial of equal treatment. It means that certain kinds of actions-like active euthanasia or a system of rationing that discriminated explicitly against dementia patients-should be morally off limits.

But this principle of equality does not in itself settle the hardest practical dilemmas faced by individuals, families, and citizens. Equal human dignity does not mean identical treatment; it simply means treating every human being as equally worthy of care, and then discerning what this human being, under these circumstances, requires and deserves. For family caregivers and medical professionals in the clinical setting, the task of loving prudence is to sort out, within certain moral boundaries, what the best course of action or non-action is for the person now here. And for society as a whole, the challenge is defending the dignity of persons with dementia in a human world where resources are always limited and where caring for the needy is not the only human good. In addition, the principle of equal human dignity, in itself, says nothing about what obligations persons with dementia (in its early stages) may still have to the society of which they are part, including generosity toward and concern for generations yet to come.

Perhaps our greatest social obligation is toward the large number of people who do not have family caregivers and thus rely on the community to stand with them and speak for them. This obligation is all the more reason why a strictly legalistic solution, like advance directives or even durable power of attorney, will not be adequate. And this is why there is good reason to lay out, for strangers taking care of strangers, what "best care" for the patient here-and-now might require.

If the goal of caregiving is to provide the best care possible for the person with dementia now here, then it is important to try to see the world as the person with dementia sees it, and to ensure that we do not allow our own discomfort with his or her diminished capacity to become the scale we use to measure his or her worth. Surely, we need to improve our understanding of life-as-lived by persons with dementia; we need to probe the meaning of experiences that might make little sense to us-such as reading books without paying attention to the order of the pages-but often give persons with dementia experiential pleasure. More deeply, we need to see the person with dementia as more than simply an individual with interests for himself, but as someone whose life has meaning for others. Sometimes this means seeing the value of a disabled person's life even when being alive may no longer seem like a benefit to the disabled person himself.

People who contend that caregiving ought to serve the "best interests" of the patient rightfully seek to put the present patient at the center of caregiving decisions. But to speak of "interests" alone also seems somewhat impoverished: human beings are not simply collections of interests, but whole persons whose lives are intertwined with others, lives that have meaning even when their interests seem limited and even when their life options have shrunk significantly. In this, the proper aim is not simply "best interests" but "best care" for the well-being of this patient, under these circumstances, at this time.

Yet even as we try to empathize with persons who suffer dementia and see them as human beings with equal dignity and worth, we also cannot lose sight of the deprivations that dementia often or eventually brings: the loss of modesty and self-control; the outbursts of anger; the descent into mindlessness; the physical discomfort; the need for diapers or physical restraints. Seeing the good of a life with moderate or severe dementia often means seeing the worth of a life that has been stripped of many worthwhile and dignified things. We need to see both the dignity of the person and the indignity of the disease.

Approaching caregiving decisions in this way brings us to the core question: How do we benefit the life this person now has-even if it is not the life the person would have chosen for himself? This straightforward question does not always have a straightforward answer. Surely physical well-being is central to the obligation of best care, and so finding ways to ease suffering and treat physical ailments as they arise-broken hips, pneumonia, urinary tract infections-would have a strong moral claim. But there are other claims that must also be considered, going beyond the present good of the body. Does one benefit the life a person now has by trying to prevent an excessively painful or degrading death, even if it means accepting an earlier death? Does one benefit the life a person now has by extending an existence marked mostly by physical and emotional misery? Does one benefit the life the Alzheimer's patient now has by forgoing life-extending treatment, so that he might finish life with some remnant of past nobility and self-awareness intact and while his presence still awakens reverence rather than repugnance in his grandchildren?

Surely, different people will see the good of the person with dementia in different terms; they will value different factors differently. To repeat, best care does not always mean that there is only a single right choice in every case. But doing our "best" for each patient should always be our guiding aspiration, and thus a check on the tendency to lower our standards and seek only what is "good enough" rather than what is "best under the circumstances." Caregivers must resist the temptation to do what is best or most comfortable for themselves in the false name of doing what is best for the patient, and they must avoid projecting their own wishes, prejudices, or burdens onto the patient.^vi

Spirit and motivation matter in these decisions, and two decisions that look very similar may have a profoundly different meaning when seen in their totality. But in the end, all decisions should operate within a shared moral framework-one that recognizes the deprivations of dementia, the limitations on family and social resources, and the significance of a person's prior wishes, but which never defines life with dementia as "life unworthy of life" and never sees causing death as a morally choice-worthy means to the end of easing suffering. After all, it is self-contradictory to propose to "care" for any patient by making him dead; and it is hard to think wholeheartedly about best care if one morally eligible option is to ease the suffering person out of existence.

To sum up: Caregivers should be guided primarily by a moral obligation and an ethical disposition to care always, and by an appreciation of the particular current needs and circumstances of each person now in their care. We should seek to provide the best care possible, case by case, situation by situation, but always within certain universal moral boundaries. In what follows, we expand our consideration of the moral guidelines and moral boundaries that should guide caregivers, before taking up some difficult yet paradigmatic clinical cases.

As we have already indicated, the discernment of best care for any particular patient, here and now, is the work of prudent deliberation and judgment. Because the variables are so numerous, person by person and circumstance by circumstance, it is impossible to reduce prudence to precise rules or to write programs for wise decision-making. Nevertheless, our tradition of medical ethics, reflecting on the character of human action and on the caregiving dilemmas of interest to this report, has articulated certain crucial concepts and distinctions to guide prudent thinking: negatively, to set some moral boundaries beyond which prudence cannot rightly go; positively, to clarify the target at which prudence should rightly aim. Such ethical concepts and distinctions are both necessary and perilous. They are necessary, because we need to see ethical decisions in their proper light, and we need to erect certain protections against doing harm, even-or especially-with good intentions. But they are also perilous, because there is always a risk of turning a concrete human situation into an abstract case and of adhering narrowly to general principles without discerning the best care possible for each particular patient.

Below, we consider four moral distinctions or concepts that have been used to try to distinguish between what is morally required, what is morally forbidden, and what is morally optional. These are: (1) ordinary and extraordinary care; (2) acts of commission and acts of omission; (3) the motives, intended deeds, and results of a human action; and (4) the burden of treatment imposed by human action and the burdens of disability and disease imposed by nature.^⁵ Out of this analysis, we will then formulate the operative moral boundaries that should guide us in actual cases.

In formal discussions of medical ethics, the terms "ordinary" and "extraordinary" care have been commonly used to think about whether to initiate, continue, or cease particular medical treatments, ordinary care being considered mandatory, extraordinary care being considered optional. But defining these terms is something of a challenge. People sometimes apply these terms to the medical technique or intervention itself, where ordinary can mean reliable ("it works"), common ("part of standard medical practice"), easy ("not distressing to the patient"), simple ("unsophisticated and easy to administer"), affordable ("not unduly expensive"), or easily available ("near at hand, not requiring much travel to get it").

In the discourse of medical ethics, the terms "ordinary" treatment and "extraordinary" treatment acquired a more precise and technical meaning, referring specifically to the intervention as it relates to a particular ailing person.^⁶ Thus, the operative meaning of these terms becomes relative to each case, often differing dramatically for different patients. For example, it seems relatively "ordinary" for a vigorous middle-aged man with decent health insurance to get coronary artery bypass surgery at the first-rate medical center near his home; for a frail old man with the same heart condition but lacking medical insurance and living far from any medical center, bypass surgery would probably be deemed "extraordinary." For the first person, the surgery is readily available and affordable without upending his entire domestic life; for the second, the surgery would create burdens so great that it becomes virtually beyond reach. The surgery itself imposes physical burdens that are not exactly "ordinary" ("easy to take") even for the first person, but also not so "extraordinary" that living with and through them is too onerous to endure. As a person ages, however, the burdens of surgery and post-operative recovery increase, and the once "ordinary" treatment becomes increasingly "extraordinary," because it becomes increasingly burdensome and risky to the patient.

To generalize: A proposed treatment could be reliable, common, simple, affordable, and readily available, yet be regarded as "extraordinary" for a given patient. For despite being ordinary in all those ways, the proposed treatment could still be useless for the patient-or, even if possibly useful, quite burdensome. Treatments that are either "useless" or "excessively burdensome" for a particular patient, however ordinary they might otherwise seem, are in the ethical sense "extraordinary"-above and beyond what is morally required. As such they may be accepted or declined, and in some cases they should clearly be declined for the good of the patient.

At one time, medical ethicists relied a great deal on this distinction, and it was the staple of Roman Catholic casuistry on this subject.^⁷ Today, this distinction is much less frequently used by doctors and ethicists. And because "extraordinary"-meaning "ethically optional"-treatment really translates into "excessively burdensome" or "useless" treatment, we might be better off working directly with those terms, seeing as they focus our attention more precisely on the well-being of the patients and thus on the kinds of concerns that are always of central moral significance.^vii

Another common distinction used in thinking about life-sustaining or life-ending treatments is that between acts of commission and acts of omission. Whereas "ordinary" and "extraordinary" focus on what counts morally in balancing benefits and burdens for the patient, this distinction focuses on the deeds of the moral agent who elects, provides, or forgoes the treatment. In the clinical context, acts of commission involve the deliberate, active use of some agent (like a drug, machine, or surgical technique) to alter the life-course of the patient. Acts of omission involve the deliberate decision not to intervene in the life-course of a patient.

Clear as this basic distinction may seem, however, its meaning is often far from obvious and its moral usefulness is, at most, partial. Analysis of the meaning of an "act" or "action" is an extraordinarily complex matter, to which we can hardly do justice here. A few observations are, however, especially germane. First, a human action is more than a spontaneous reflex or a slice of behavior. The description of an act itself-what the person does-is governed by the person's intention (by his "plan of action"), both as to ends and means. In addition, the same action (or plan of action) may be done from many different motives and in order to accomplish many different results. All of these aspects count in any ethical analysis of our deeds, and their evaluation depends on more than the distinction between doing and not doing: if undertaken with wrongful intention, all deeds-whether of commission or omission-may be judged adversely.

Second, if not acting is a choice made by conscious decision, this omission is itself a moral act with moral significance, and those who so choose are often as morally responsible for not doing as those who choose to act are responsible for doing. In cases such as the ones of interest to this report, people sometimes take refuge in the distinction between omission and commission, as if it were an easy way of distinguishing between what is morally permissible or praiseworthy and what is not. That is probably more weight than the distinction by itself can bear.

Third, the moral meaning of the same act of commission (or of the same act of omission) can differ, owing to the predictability or non-predictability of the outcome. In some cases, we can know with virtual certainty that intervening will sustain (or end) life or that not intervening means that the patient's life will end. In other cases, we can only know the likely, or probable, or potential outcome of acting or not acting. Where omitting an action is certain to produce death (for example, not providing artificial nutrition and hydration to a person in a coma), it will be evaluated differently than when the outcome of the omission is uncertain (for example, not inserting a feeding tube into a dimly conscious person who can still be spoon fed).

Commission and omission seem to be ends of a spectrum rather than either/or categories of action. There are clear acts of commission-such as treating pneumonia with antibiotics or killing a patient by administering some lethal agent. There are clear acts of omission-such as allowing a patient to die of infection by electing not to treat. In between are actions that are harder to classify as commissions or omissions. Some actions remove treatments already underway-for example, turning off a respirator or removing a feeding tube. Others cease periodic treatments-for example, stopping blood transfusions or ceasing dialysis.

It scarcely makes sense to label every failure or refusal to act as itself a form of action; our responsibility as actors depends on the circumstances. Clearly, some behaviors-such as failing to wish a stranger a happy birthday-are unlikely to be termed acts of omission; for in almost all circumstances they would not be regarded as acts of any kind. Other behaviors-like forgetting to wish one's mother a happy birthday-may or may not be acts of omission, and may or may not be blameworthy, depending on the circumstances. In the medical context, a decision not to intervene-especially after clinical assessment of what intervention versus non-intervention likely means for the patient-is not simply an omission but a deliberately chosen omission. Physicians have a legally defined affirmative duty to act in medically appropriate cases; in such cases their decision not to act when they are duty bound to do so becomes a culpable omission.

Despite these ambiguities and complexities, the distinction between commission and omission does still possess some moral significance, mainly in the two common situations in which the difference between acting and not-acting is thought to be especially relevant: (a) the difference between stopping and not starting treatment (where the distinction may make, morally speaking, only a symbolic and psychological difference), and (b) the difference between active killing and letting die (where the distinction makes considerable-but not complete-intrinsic moral difference).

a. Never beginning treatment versus ceasing/removing a treatment-in-process. Is there a moral difference between never beginning a treatment at all and ending a treatment already begun? (There may sometimes be a legal difference, but we limit ourselves here to the moral question.) We can imagine a case in which, though there might have been some initial reason never to begin a treatment, that reason ceases to be significant once the treatment has been in place for a time. For example, a patient might strongly resist the initial insertion of a feeding tube, but eventually grow physically accustomed or at least un-resistant to it. Conversely, there might be cases in which an intervention (believed to be temporary) is begun in the hopes of improving a patient's condition, but where improvement never comes and the continuation of the intervention, now necessary to sustain life, has become a serious burden for the patient.

There is surely symbolic and psychological importance to ceasing an ongoing treatment, especially where one knows in advance that the likely consequence of doing so is imminent death. If we withdraw treatment in such a case, we may more readily think of ourselves as having caused the patient's death or, at least, as having initiated the irreversible process of the person's dying. In forgoing a new treatment, one does not alter the status quo of the patient; in acting to end a treatment-in-process, one deliberately alters the status quo, and the consequence of such alteration may be lethal. In many cases, however, there is little or no intrinsic moral difference between these two kinds of acts-never beginning treatment and ceasing treatment already begun-and in both cases, the actual cause of death is not the caregiver's action or non-action but the underlying disease-in-process.^viii Yet it is natural that we experience ourselves as causal agents more strongly when we withdraw a treatment already begun than when we decide never to begin a treatment at all. And it is surely important for all concerned that physicians not seem to be intending to cause a patient's death when they rightly elect to discontinue treatment that, after a trial, has become futile or excessively burdensome.

But in the end, this distinction, though relevant, is hardly decisive, neither medically nor (especially) ethically. Much will depend on the condition of the patient, the nature of the disease, and the particular type of treatment in question: Is it burdensome? Will it work? Can we know before we try? What matters most is not whether a decision forgoes treatment in advance or removes treatment-in-process, but the moral and human aim of the decision to begin, cease, or never begin a particular treatment. Whether the action is leaving a disease untreated or ending a treatment already begun, the question is always: Am I benefiting the life the patient now has by acting in this way?

b. Active killing versus letting die.Medical ethics has long insisted on the moral difference between taking deliberate positive measures to bring about the death of a patient and letting a patient die of "natural causes." To be sure, medicine generally seeks to oppose death by natural causes and to correct or restrain the biological causes of debility and mortality. But caregivers must also, eventually, "let die" those entrusted to their care, if only because every patient eventually dies, medicine or no medicine. "Letting die" is thus always part of caregiving.

The question, therefore, is not whether to accept natural death, but how and when to do so. What matters morally is discerning when it is appropriate to "let die," even in cases where the means to oppose death and extend life still exist, but where using such means may not benefit the life the person still has. Extending life is not the only way to benefit a person's life, and length of life is not the only good worthy of the caregiver's consideration. And so, in some cases, letting a patient die "earlier than necessary" is morally sound or even morally obligatory, if the available ways of extending life are themselves morally problematic.

By contrast, taking active measures to end a patient's life, even if such measures are taken with the best of motives, is always difficult (or impossible) to reconcile with the ethics of caregiving. Active killing, even when motivated by a desire to end bodily or psychic pain, makes caregivers the final masters and arbiters of life and death for the person entrusted to their care. It denies the patient's right to life. It breaks the state's monopoly on the legitimate use of lethal force. It makes some doctors sometimes executioners, calling into question their trustworthiness always to serve the patient's good. Wielding such power is deeply antithetical to the practice of medicine and the vocation of doctors, who are called to serve the patient until the very end. As the Hippocratic Oath already put it: "I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect. . . . In purity and holiness I will guard my life and my art."^⁸

Serving the patient does not mean extending life at all costs; doctors are not only in the business of curing but also in the business of caring, which sometimes means accepting a shorter, more comfortable life. But even when doctors and caregivers surrender to death, this surrender honors our humanity best when it steadily affirms the life of even a dying person and when it steadfastly refuses to abandon the person in his dying. To end a person's life is to abandon that life. Active killing-even out of mercy-is not the giving of care.

Although the distinction between "letting die" and "active killing" is morally significant, it is not by itself morally decisive. For although active killing is always off limits, letting die is not always permissible or praiseworthy. As in all of our chosen actions, the moral quality of the action taken (or omitted) will be shaped by the reasons for taking it; hence, we must consider the moral weight of those reasons. If one deliberately omits treatment so that a patient will die, such a choice seems morally little different from intervening actively to end the patient's life. True, by not moving from deadly intention to overt deadly deed, an act of omission aiming at death does not put doctors and caregivers in the perverse position of being the actual cause of death. And, by leaving the patient at the mercy of nature and his diseases, it does not guarantee or manage with precision a particular moment of death, a death-on-demand. To this extent, the harm to all of us-as a society devoted to caring for one another-is much greater in the case of active killing. At the same time, however, the wrong done to the dying person may be morally the same, if, either by omission or commission, we betray the patient by aiming at his death. In the one case (active killing) we use a lethal agent of our own devising as the means; in the other case (letting die where death itself is the aim) we use disease as the means of achieving a death we seek but do not cause.

Nevertheless, even if the distinction between active killing and letting die does not solve all our difficulties (as just noted, it does not help us discern the difference between morally sound and morally problematic instances of letting die), the distinction remains morally important, and the condemnation of active killing that it implies is ethically crucial. For example, we might in good conscience remove a respirator from a patient in the final stages of brain cancer so that he can die a more peaceful death unburdened by the machinery. But we should not give a patient in the final stages of brain cancer a lethal injection so that he will die a more peaceful death. (Instead, we would rely only on improved pain management, including, if necessary, heavy sedation.)

A death resulting from "letting die" (withdrawing the respirator) and a death resulting from "active killing" (giving a lethal injection) might follow a roughly similar trajectory and would reach the same outcome, and they might therefore seem similar, at least from the perspective of the dying patient (or those for whom, mistakenly, only the end result counts). But for us, as a society of caregivers, the two deeds would have a morally different meaning and morally different implications. We need to trust that our healers will never turn into our killers; we need shared limits to prevent deliberate harm to the vulnerable. We need to cultivate a society of caregivers who will never think of eliminating a patient in order to avoid the trouble of caring for him. For both ethical and prudential reasons, therefore, we must preserve the line between active killing and letting die, knowing that this distinction may not always be morally sufficient or morally satisfying in real-life cases.

Embedded in this distinction between (a forbidden) "active killing" and (a permitted or approved) "letting die" is a deeper distinction between wrongs and harms, and more precisely, between wrongs that we ourselves commit and harms that "nature" inflicts. It acknowledges that there are ills we cannot relieve as quickly and completely as we might wish-at least without doing injury in the process. There will, of course, be at least some moments-for example, when continued life of one who is suffering seems itself an unrelieved misery-in which we wonder why we should respect the boundary (that forbids active killing while approving letting die) firmly established in our medical and moral tradition. Exactly when we ourselves are distressed by our own inability to relieve suffering, we are understandably most tempted to set aside this distinction and end suffering by "ending" the patient who suffers. We might even try to persuade ourselves that we are in fact not aiming at the patient's death but merely at his suffering.

Such wrenching human situations often lead caregivers into confusion and anguish, with mixed and complicated emotions: we desire to keep a loved one alive yet want her suffering to end; we fear that not doing "everything" means that we are guilty of betrayal yet we worry that prolonging life in such a condition is a form of torture; we want what is best for those we cherish but we are exhausted and anguished ourselves. Under such circumstances, caregivers may find that the moral lines between love and betrayal, between standing with the patient until the end and forcing the patient to endure the worst kind of end, between compassion and cruelty, between leaving the patient to suffer and leaving the patient to die, seem profoundly unclear.

Yet in this murky world, the distinction between "active killing" and "letting die" offers us one bright line-a line that keeps us from becoming killers ourselves. Fidelity to the life we care for requires that we not set ourselves resolutely against it, perversely trying to help it by erasing it altogether. Caregiving that truly cares will not annihilate its beneficiary.

Although this moral boundary should be respected in all cases, its utility is, however, also limited. Even if we steadfastly refuse to kill our patients and loved ones, we often still find ourselves in morally difficult straits. Determining, for example, how and when to accept natural death or the circumstances in which one may ethically let a patient die requires that we attend carefully to the motives, the intended deeds, and the goals of our actions (and inactions), a set of distinctions to which we next turn.

As already noted, every human action can be looked at and evaluated in several different ways. One way has to do with the agent's motives. Suppose a terminally ill man, dying of cancer, lies in his hospital bed in considerable pain and respiratory distress. Suppose also that another man enters the room and, in order to bring about the patient's death, gives him a fatal overdose of morphine.

Now consider this scenario from two different angles, with two different reasons that moved the giver of morphine to target the patient's life. In the first scenario, the "killer" is a close friend of the dying man. He fears for his friend the pain and anguish of the coming weeks, desires for him a relatively peaceful death, and gives him an overdose moved by these feelings of mercy and affection. In the second scenario, the "killer" is an ex-friend (and now an enemy) of the dying man. Cheated and betrayed in important matters by the man now dying, this ex-friend is not satisfied simply to see him die. He wants to have a hand in it, to be himself the agent who brings about the patient's death.

If asked to evaluate the character of the two "killers," we might find much to praise in the character of the first and much to condemn in the character of the second. Yet, despite their very different motives, each does the same thing: Each targets the life of the patient and aims at his death. Hence, whatever final moral evaluation we make of their actions, we should not deny that they do the same thing. It would be misguided to describe the second man's action as "killing an ex-friend" while re-describing the first man's action as "showing mercy to a friend." To do so blurs rather than clarifies the moral situation. Instead, if we want to approve the first man's action and condemn the second man's, we will have to argue that a praiseworthy motive (such as mercy) is more important than the chosen deadly deed itself-so important that, moved by mercy, we might rightly exercise a kind of ultimate authority over the life of a fellow human being. But if, on the contrary, we hold that the exercise of that kind of authority violates the equal human worth that we prize, we would probably think that such a motive in such circumstances should be characterized as a temptation-understandable, to be sure, but not praiseworthy if it moves one to perform deeds that are ethically unjustified.

We know that motives are important, and we want to give them weight in our moral judgment, but we quite properly are reluctant to let a praiseworthy motive by itself transform any deed, however questionable, into the right thing to do. For regardless of motive, what we do, and what we are willing to do, itself shapes our character. Over time, our deeds turn us into people of a certain sort. Judgments about what we do, therefore, carry their own independent moral weight and should not simply be re-described in terms of our motives.

But there is a further complication in the analysis of our actions. We act not only because we are moved by (praiseworthy or blameworthy) motives, but also because we have goals that we seek to achieve. What we do is related to what we accomplish or hope to accomplish by acting. Thus, moved by mercy, one might intentionally take a friend's life, hoping to achieve thereby the relief of the friend's suffering. What one does in this case is to kill; what one accomplishes (if successful) is an end to suffering (by means of the person's death).

The complicated connections between what we do and what we accomplish, between the intended deed itself and the direct or indirect results of our actions, constitute one of the enduring problems for moral reflection.^ix On the one hand, we hardly want to say that results count for nothing, that it matters little morally what purposes we undertake, or what goals we try to accomplish, or what outcomes actually result from our pursuing them. On the other hand, we are also reluctant to say that desirable results, in and of themselves, are alone sufficient to justify any deed that may accomplish them. Moreover, some actions that are undertaken even with advance knowledge that bad things may result can be morally justified, provided that the primary intention of the action is good and that the bad consequences are not the intended aim or goal of the action itself. (This is the so-called principle of "double-effect": it sanctions, for example, the giving of high doses of morphine to a terminally ill patient in order to relieve severe pain, even though doing so increases the risk of depressing respiration and thus hastening death.) Some of the most wrenching of life's circumstances-including and especially in the clinical context-arise when we can find no way to accomplish very desirable goals other than by doing what may be wrong, or when doing what is right seems to accomplish undesirable results.

An act can be wrong even if it achieves good results, and an act can be right even if some of its effects are evil. It would be wrong to compel an unwilling and fully competent patient to receive treatment, even if the treatment turns out to cure him (and even if he thanks us afterward). Likewise, it would be right to give a 65-year-old man just diagnosed with early Alzheimer's disease antibiotics for his pneumonia, even if doing so results in more years of worsening debility and dementia.

There are additional reasons why we should not be seduced into making choices and evaluating judgments solely on the basis of results. Doctors, nurses, and all caregivers daily confront the many uncertainties that surround our attempts to accomplish what is good for patients in need. Often we cannot say with certainty how a given disease like dementia will progress, what the results of different possible interventions may be, whether the course of a (certainly deadly) disease will be swift or slow (or preempted by some other unforeseen cause of death). To be a caregiver is to live, day after day, with unexpected side effects, with desired results that turn out to seem undesirable, with a recalcitrant nature that resists our attempts to master it. These uncertainties argue for modesty on our part-and for a respect for moral limits on what we do in our endeavor to accomplish what we think would be good.

In any case, as will be readily apparent in the discussion of cases in the next chapter, thinking about the complexities of care for those who are aging, suffering from dementia, or dying will require us to pay attention to different aspects of moral analysis: to the motives that shape us and may sometimes tempt us, to the goods and goals we hope to accomplish in our work as caregivers, and to the nature of what it is we actually do (whatever our motives or goals may be). All these features of moral analysis will play a role in our discussion of cases; for they play a role in our effort to live well and do well for those who rely upon us.^x

In our discussions so far, we have frequently mentioned but not yet explored in detail a crucial distinction: the distinction between the burdens of a medical intervention and the burdens of living with a disease or disability.

The burdens of medical interventions range both in degree and in type: from the minimal pain (for most people) of drawing blood, to the nausea caused by cancer treatments, to the pain of recovering from major surgery, to the excruciating suffering of being treated for major burns. Sometimes the burdens of therapy involve not bodily pain but various limitations on human action required by treatment or side effects caused by treatment-such as extended immobility, restrictions on eating, or impotence as the side effect of taking certain medications. Sometimes the burden of treatment is less the acute burden of a single intervention, more the accumulated exhaustion of being a permanent patient-of needing insulin shots daily or dialysis multiple times each week for the rest of one's life in order to continue living.

Moreover, sometimes the burdens of treatment are more psychic than somatic-the misery of being stuck in a hospital bed, removed from everyday life, unable to do the things one loves, temporarily or even permanently. For many patients-especially patients with dementia or other kinds of cognitive dysfunction-there is often the burden that comes with not understanding a given treatment, and therefore believing that caregivers are intervening against them rather than for them. And-though it must be evaluated somewhat differently if our practice of medicine is to remain patient-centered-there are also the burdens of treatment endured by the caregivers: the personal burden of arranging for medical care, the economic burden of paying for medical care, and the emotional burden of continuing medical care, especially when there is little or no hope of recovery. Of course, the same treatment will burden different patients very differently-depending on age, strength, tolerance for pain, the level of support from friends and family, and the quality and skill of physicians and nurses. There is no simple formula for deciding which treatments are excessively or unduly burdensome. We cannot make such judgments based entirely on the treatment itself, but only the treatment as applied or not applied to a particular patient.

But what is crucial to remember about the burdens of treatment is that they-in contrast to the burdens of the disease or disability we treat-are always produced or imposed by the caregivers themselves, not by nature or chance. The treatment itself always aims to make things better for the patient. But sometimes the effort to improve a patient's long-term condition makes the patient's current condition notably worse; sometimes intervening to fight a deadly disease itself imposes such excessive suffering that the treatment harms the life the patient has now, even if it might delay the patient's death a little longer. As caregivers, decisions about treatment always fall within the realm of our moral responsibility; it is the realm in which we decide what we owe the patient. It is the realm in which we exert greatest control and therefore have greatest responsibility-if never perfect control (treatment is limited and often unpredictable) and never perfect responsibility (the obligation to care for the patient does not make us responsible for every burden the patient confronts).

As we think about what it means for a treatment to be "burdensome" and thus what our obligations as caregivers are, we need a more developed typology of different ways in which burdens may be related to treatments. Specifically, there are: (i) treatments that are excessively burdensome; (ii) treatments that are not excessively burdensome but prolong a life marked by the terrible burdens of current disease; (iii) treatments that are not excessively burdensome but prolong a life where the terrible burdens of a disease in-process seem likely to increase greatly in the near or distant future; and (iv) treatments that ease a current burden but prolong a life marked by other existing or likely future burdens.

One of the most difficult situations is precisely when a relatively non-burdensome treatment can prolong a life marked by great hardship or looming misery. From the patient's perspective, after all, suffering is suffering, and the burdens caused by nature and chance seem-assuffered burdens-no different from the burdens caused by intervention.^xii So why is it that medical ethics holds that it is morally permissible to withhold burdensome treatments but morally wrong to withhold useful, non-burdensome treatments so that a life marked by terrible burdens will more likely come to a swifter end? This difficult question prompts three kinds of answers or reflections.

First, medical interventions are concrete human acts for which we bear clear responsibility as human agents; by contrast, those diseases imposed by nature are not produced by human action. We are fully responsible for our acts; we are not fully responsible for the burdens life itself sometimes brings (even though we may be deeply dismayed by such burdens in our own life or that of others). In training ourselves to distinguish between the burdens produced by treatment and those brought by life, we are searching for a way to turn against burdensome treatments without simultaneously turning against the life of a fellow human being.

Second, although we are not responsible for the possible, probable, or likely future miseries that befall those whose lives we sustain by intervening medically to benefit the patient's present life, we must acknowledge that we act knowing and accepting the consequences or potential consequences of our interventions, even if we are not fully responsible for them.

Finally, we should acknowledge the frustration we may experience when we seem obligated to let a humanly indifferent nature "take its course" while prohibiting certain human acts-like actively ending a painful life or deliberately seeking the end of life by an act of omission-that might relieve the burdens of chance. We should expect that we will continue to be troubled by the fact that our medical and moral tradition holds that there are some burdens we cannot rightly relieve entirely (if the only means to do so is turning against not just a treatment but a life). We will and should suffer at the suffering of others to whose care we are committed. Yet we should remember that aiming at a person's death is always a kind of betrayal; standing with the suffering person, in the hardest times, is not-even if we might rage together with the patient at the God, or nature, or universe that permits such misery, and even if we pray with the patient for an end to a painful life that is nevertheless not ours to end.

The foregoing discussion of these various moral distinctions has shown, we believe, why it is difficult to state precisely how to define "best care" when patients who are suffering greatly are candidates for treatments that might extend their life, especially when such patients cannot choose for themselves and are entirely (or largely) in the hands of their caregivers. There are no simple formulae to guide us, and no algorithms for calculating the relative weights of benefits and harms. Seeking the best care possible will always require the wise and prudent judgment of the people on the spot: spouses and children, guardians and friends, doctors and nurses, social workers and hospice professionals.

Yet prudence needs help from principle. Our ability to seek wholeheartedly for the best care possible under often very sad circumstances is immeasurably enhanced by the existence of certain moral boundaries that define the limits of possible choices and that prevent us from erring greatly when we are overcome with frustration, exhaustion, or moral confusion. These moral boundaries are in fact entirely in line with our medical-moral traditions, frequently renewed by reflection and adjustment through changing times. They are by no means the whole truth that prudence seeks to discern. Although they set boundaries to our deliberation and possible choices, they provide no formula for best care in particular cases. Further thought and reflection will be required to discern what we owe those for whom we must care.

We recognize that we are entering on perhaps unprecedented times, the age of a mass geriatric society, with hundreds of thousands of people no longer able to care for themselves and unable to decide what kind of medical care they in fact want. We also recognize that there will likely be great pressure to alter these boundaries, as frustrated and unhappy caregivers look for easier ways out of the sad fate of having to expend mountains of care on persons who will only sink further into their prolonged and degrading decline. But relying partly on the strength of the moral exploration just completed, partly on the evident good moral sense of the boundaries themselves, we present the following moral boundaries as rules to guide prudent caregivers in action:

As we have already noted, respecting these boundaries does not suffice to reach the concrete conclusion of what constitutes best care in individual cases. And as we shall soon demonstrate, we recognize that there will be hard cases that put our ability to abide by these rules to the test. Still, we think that these boundaries will and should guide us as we struggle to keep faith with the duty to care and as prudence guides us to act affirmatively in the service of our loved ones' well-being.

Before leaving the general considerations of caregiving to examine concrete cases, we should emphasize that ethical caregiving is not primarily about following rules of right conduct or observing moral boundaries, important though these are. It is primarily about creating the disposition to care and cultivating the habits of caring, often in the face of great obstacles and at the cost of considerable time and resources. Ethical reflection of the sort engaged in here cannot, by itself, produce the requisite traits of character, neither in individuals and families nor in the larger community. But it can begin to sharpen the gaze and deepen the understanding, without which even a good heart can sometimes be led astray. By pointing us to the proper target-best care-and by showing us the limits of proper conduct, these theoretical discussions, admittedly far from both public policy and the daily practice of medicine and nursing, can improve our aim and limit our failings as we try to meet our obligations, case by case, thereby manifesting and acquiring the caring character so indispensable to the task ahead.

Footnotes

i. Death is, of course, a natural part of life, or, more precisely, the natural termination of life, giving life its finite character. But humanly speaking, it is not simply or merely a "natural part of life."

ii. Self-destruction is not an issue for caregivers dealing with dementia patients who have lost self-awareness and who can no longer care for themselves. True, as we pointed out in Chapter 1, suicidal thoughts do occur to some patients with early Alzheimer's disease, despairing of their future. But as we also pointed out, this is generally the result of an overlaid depression, and with the aid of a discerning physician and anti-depressant medications these desperate patients commonly throw off their depression and their suicidal thoughts. The failure to diagnose and treat depression-often the result of despair that afflicts the patient's family even more than it afflicts the patient-is a common and grave error in caring for patients with dementia.

iii. Appealing as it might sound, Xenophon's description of the good death also raises many questions: If we are still sound of body and mind, can we ever really accept death with tranquility? And if we are still a source of happiness to our friends, would they let us "fade away" if they had the power to keep us going? Do human beings deserve the most tranquil death? Or is death, in some ways, the very opposite of tranquility-a nasty robbery of life, to which we can surrender gracefully but never happily? And what is the meaning of the fact that the peaceful death here described (the death of Socrates) is brought about by deliberate-or deliberately imposed-human action (that is, by the drinking of hemlock)? Nevertheless, Xenophon is clearly on to something: a peaceful death, in the right season, is for most of us the best we can humanly hope for.

iv. We will discuss some of these boundaries later in this chapter.

v. We are well aware that many people in need of home or institutional care have no family members-or no dependable family members-who are able to care for them. In these cases, family well-being is, of course, not a relevant goal of caregiving.

vi.At the same time, potential patients should not seek a guarantee, long in advance, that they will "never be a burden" to their loved ones and thus look for ways to orchestrate an early exit, especially when those loved ones would rather bear the burdens of care than the burden of not being permitted to care.

vii.We take up the subject of "burdensomeness" below.

viii. A good case can be made that a deliberately limited trial of therapy is morally better than not starting it, because it permits a realistic assessment-and not just a guess-of the merits of the treatment for the particular patient. To avoid the trap of not being able to stop what has been started, some physicians now place a time (or other) limit on the treatment at the time it is begun. For example, they order tube feeding "for three days," with evaluation to follow the trial. If it is then deemed unlikely to do good, it stops "automatically." (We owe this information to Dr. Joanne Lynn.)

ix. Strictly speaking, there is a difference between the goals and the results of our actions: our goal (that is, our wished-for end) might be to accomplish a certain desired result, but the actual result might turn out to be other than what we wished for.

x. This moral analysis is most difficult in those cases in which the relationships among our motive, our chosen deed, and our desired result are most complicated. In some cases, these different elements of human action are clear: The doctor who gives a patient a lethal injection clearly aims at the person's death in undertaking such an action. Death is the aim; compassion is the motive; and an end to the patient's suffering is the desired goal and the accomplished result (along with a dead patient). By contrast, the doctor who withdraws a life-sustaining but unbearably painful or distressing treatment foresees death as a possible (indirect) result of his action, but in seeking to remove the suffering his own treatment has caused, he does not aim at death. Stopping a painful treatment is the aim of action; benefiting the life the patient still has is the motive; and greater peace and comfort (notwithstanding the risk of an earlier death) is the desired result.

In other cases, however, the relationship between our motives, our chosen deeds, and the goals or results of our actions is far more complicated. This is especially the case in trying to describe and understand certain acts of omission, where caregivers elect not to treat a deadly or potentially deadly ailment even when the treatment itself is not burdensome and might be efficacious in treating the ailment in question. Confronted with a life marked by terrible suffering or in the end stages of disease, the motive for not treating may be the desire to provide the best care possible to the suffering patient as a whole, rather than pursuing the most effective strategy for acting against a particular treatable co-morbidity. But how, precisely, shall we characterize the aim of not giving treatment: "The death of the patient?" "The refusal to continue extending his miseries?" "A life with fewer burdens until its natural end?" (Note continues on next page.)

Do we necessarily aim at death by not treating? Is "aiming at death" really the best way to describe what loving physicians and family members do in such a case, especially those who are administering care simultaneously in many other ways? Or do caregivers aim at a life with fewer burdens until its natural end, a life where nature is allowed to take its final course, a life where excessive suffering is not unnecessarily extended by our own interventions? This is indeed the hardest kind of case. In one sense, it seems impossible to describe withholding such life-preserving treatment as anything other than aiming at death, on the tacit premise that the patient is "better off dead." And yet, the overall human description of such a decision to "let go" or "let die" seems different than taking active measures to kill. This is a dilemma we will confront in greater detail in the particular cases that follow in Chapter 4.

xi. Of course, a person's attitude toward the fact of his having to suffer would be different if he thought that he was suffering at the hands of his family rather than at the hands of nature or fortune. But as experienced bodily suffering, the clear difference in the cause would not manifest itself in a clear difference in the misery or distress. And for persons with advanced dementia, the capacity to distinguish between the burdens of disease and the burdens of treatment is already long gone. But as we have already indicated, one can mistreat someone even if the person cannot know that he is being mistreated. This is why, even if the source of his suffering matters not to the patient with dementia, the distinction among causes is relevant for assessing morally the actions and agency of caregivers.

8. "The Hippocratic Oath," translated by Leon R. Kass, M.D., in Being Human: Readings from the President's Council on Bioethics, 2003. See also, Kass, L. R., "Neither for Love nor Money: Why Doctors Must Not Kill," The Public Interest 94: 25-46, Winter 1989.

TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY

Table of Contents

The Ethics of Caregiving: General Principles
Chapter 3

I. Defining the Subject

II. Human ContextS of Caregiving: Life, Death, and Modern Medicine

A. The Worth of Human Lives

III. The Ethics of Caregiving

Footnotes

ENDnotes

Next Chapter

TAKING CARE: ETHICAL CAREGIVING IN OUR AGING SOCIETY

Table of Contents

The Ethics of Caregiving: General Principles Chapter 3

I. Defining the Subject

II. Human ContextS of Caregiving: Life, Death, and Modern Medicine

A. The Worth of Human Lives

III. The Ethics of Caregiving

Footnotes

ENDnotes

Next Chapter

TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY

The Ethics of Caregiving: General Principles
Chapter 3