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TAKING CARE: ETHICAL CAREGIVING
IN OUR AGING SOCIETY


Table of Contents

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

Conclusions and Recommendations
Chapter 5

This report has been, in a sense, three reports in one, unified by a concern for, and a line of argument about, ethical caregiving in our emerging mass geriatric society.

Chapter 1 provided an overview of our aging society. We looked at the demographic trends, the effects of modern medicine on aging and dying, and the novel opportunities and social challenges now before us as the baby boomers age and retire. We also looked at individual aging and the lifecycle, and explored the many factors that shape how different people age and die. We paid particular attention to age-related dementia, especially Alzheimer's disease, and to the special burdens that this increasingly common form of debility imposes on both patients and caregivers. In the end, we concluded that we may face, in the coming years, a genuine caregiving crisis, with many more dependent persons in need of long-term care and fewer available people to care for them.

Chapter 2 looked more specifically at advance directives, a much heralded remedy for dealing with difficult decisions in long-term care. These legal instruments enable individuals to leave written instructions about future treatment preferences should they one day become incapacitated ("living wills") or to appoint a trusted proxy to make such treatment decisions on their behalf ("durable power of attorney for health care"). We examined the principles behind these two types of advance directives and the evidence of how they are working in practice. In the end, we concluded that appointing a proxy decisionmaker is almost always sensible, while trying to dictate the precise terms of one's future care is often misguided or ineffective. Living will or no living will, there is no substitute for human caregivers on the spot, who will regularly be called on to make treatment decisions for those who cannot make them for themselves and whose numerous and evolving everyday duties of caregiving simply cannot be specified in advance.

Chapters 3 and 4 then considered how ethical caregivers should decide and act, in giving care to persons with dementia. These chapters examined several ethical dimensions of caregiving: the aims of care and the moral boundaries and guidelines that should govern caregivers (Chapter 3); and the work of principle and prudence in reaching sound caregiving decisions in a range of ethically difficult clinical cases (Chapter 4). The goal of caregiving, we concluded, should always be to serve the well-being of the person now here, always trying to benefit the life an individual still has, even when that life has been diminished by disease, debility, or dementia.

Taken as a whole, our primary aim in issuing this report is to help spark a national conversation about aging and caregiving, and to enrich the nation's thinking about what it means, in practice, to age well and care well. Our purpose is not to provide a detailed policy program or extensive policy recommendations, but to spur and guide those who must undertake this grave and pressing responsibility. We aim to ensure that future policymaking will always take into account the ethical and humanistic aspects of aging and caregiving, not merely the economic and institutional ones. And we aim to give aid to caregivers, familial and professional, struggling to do their best in hard, often tragic circumstances. The challenges of aging are challenges for all of us-as citizens, family members, and individuals looking ahead to our own inevitable decline. We offer this report to help us serve and preserve our humanity in our new world of longevity.

In this concluding chapter, we summarize some of our key findings and present some modest recommendations. We offer guidance to caregivers and their advisers regarding the care of their patients and loved ones; we suggest ideas for legislators, judges, professional policymakers, and ethics committees regarding advance directives and the need for other possible policy initiatives; and we present one major suggestion for mobilizing sustained research and serious national attention to meeting the needs and responsibilities of caregiving in our aging society.

I. Life, Health, and Death in Our Aging Society

A. Our Unprecedented Situation

Barring major unforeseen developments, we are entering an unprecedented phase of our history-indeed, of human history-featuring (1) a new age structure of society, (2) longer and more vigorous old age for millions, (3) new modes of dwindling and dying, and (4) a likely shortage of available caregivers.

1. The New Demography.

In the decades ahead, the age structure of the American population will almost certainly undergo a tremendous and unprecedented shift, continuing and accelerating a trend toward an older-and, increasingly, also an "old-older"-population, with the oldest segments of the population growing fastest, both in absolute numbers and percentages of the whole. One projection gives the big picture: Between 2000 and 2050, the population of Americans age 45 to 64 is expected to grow modestly from 61 to 85 million while the population 65 and over is expected to grow from 34 to 79 million, with the cohort 85 and above more than quadrupling, from 4 million to 18 million. These dramatic shifts are the result of improvements in public health and preventive medicine and of modern medicine's success against many causes of premature death; of the relatively high birth rates of the baby-boom years of 1946 to 1964; and of the relatively low birth rates that have persisted in the years since then. This society-wide increase in personal longevity is a remarkable human achievement, but it also creates an unprecedented social situation, with novel challenges and uncertainties.

2. Healthy Old Age.

In many ways and for increasing numbers of people, this is a wonderful time to grow old. More people are living longer and staying healthier. Premature death is in decline, and so are certain kinds of chronic disability for the population over 65. More people are able to enjoy a true period of retirement, with the resources and leisure to pursue their avocations. Unfortunately, many people still struggle economically, physically, and personally in old age, and many people still have their lives tragically cut short. But compared to even the relatively recent past, when growing old was rare, when healthy old age was rarer, and when poverty in old age was the rule, the current situation is an astonishing achievement. We are already, as it were, staying younger longer, and we can look forward in the years ahead to still more advances and improvements in healthy and vigorous aging.

3. Debility and Dementia, Death and Dying.

Living longer has also changed the patterns of illness during old age, especially the illnesses that lead toward death. Although most of us seem likely to enjoy a greater period of healthy old age, many of us are also destined to experience a longer period of chronic illness and dependency before we finally die. Already, only a minority of us dies suddenly, without prior chronic illness. Already, the most common trajectory toward death is the path of "dwindling," of progressive debility, enfeeblement, and dementia, often lasting up to a decade. Special challenges arise for patients suffering from the various age-related dementias, especially Alzheimer's disease, a condition whose prevalence is now high (an estimated 4.5 million sufferers in the United States) and increasing. This progressive, degenerative, and fatal disease, lasting typically between five and ten years, begins with weakening memory and everyday forgetfulness, moves to progressive loss of basic life skills, speech, and self-awareness, and concludes with severe bodily breakdown, in total dependence on others for all activities of daily life. An unprecedented number of people will need long-term care, not just for months but for years. Through much of that time, they will not be able to participate in caregiving decisions, and caregivers will often face critical decisions about choosing or forgoing life-sustaining or death-postponing treatments, in addition to the daily efforts of providing ongoing care.

4. The Availability of Caregivers.

While the need for long-term caregivers and proxy decisionmakers appears to be increasing, the supply of readily available caregivers appears to be shrinking. Because families are smaller, there are fewer adult children to care for their aged parents. Many more old people are childless and alone. Increased family instability and greater geographic mobility mean that, in many cases, fewer caregivers are willing or available to care. Once the typical caregiver was a woman who did not work outside the home; today the typical caregiver, still a woman, is employed outside the home, and often obliged in addition to care for her own young children. At the same time, there are already shortages of professional caregivers-nurses and geriatricians-and caregiving jobs such as nurse's aides often lack the levels of compensation and benefits that might attract sufficient numbers of workers. The cost of care is rising, the ratio of workers to retired persons is falling, and many other social goods compete for scarce resources. Looking ahead, we may face a situation with more people needing extended long-term care, with more prolonged periods of debility en route to death, but with fewer qualified people willing and able to act as caregivers. This is an issue demanding urgent social attention.

B. Our Uncertain Future

Although we know much about the aging of American society, there is much we do not know, especially about possible future developments, medical and social. We have good reason, therefore, to be both alert and cautious. Economic growth or economic setbacks may increase or decrease the resources available to families and state governments for providing care in old age. New instruments such as long-term care insurance may expand the caregiving options available to families. Changed work patterns or levels of compensation may alter the availability of both voluntary and professional caregivers. Policy changes or new programs might reduce the costs of care or lead to better and more suitable kinds of care. Free societies are creative societies, and in the years ahead we should expect to see several now-unexpected ways of addressing the challenges of caring for the disabled elderly.

In addition, major biomedical advances-say in the prevention, delay, or amelioration of Alzheimer's disease-could modify these current projections, by altering average life expectancies, changing the prevailing patterns of health and illness, and transforming the most common trajectories toward death. (Conversely, major breakthroughs in the treatment of cancer or heart disease could increase the proportion of people whose death comes only after a decade of dwindling.) New technologies to facilitate basic care and improved practice standards within medicine and nursing could also make caregiving more effective and easier.

Yet even in the best-case scenarios-with healthy aging until the end, family caregivers ready and willing to care, and public policy that supports caregivers and care-receivers-we still face definite challenges ahead. These include, for example, the costs of financing long-term care or expensive medications for the elderly, or decreases in economic productivity should more workers in their prime devote more energy to the "non-productive" activities of caring. And it is by no means assured that we will get the best case scenario rather than something much less ideal: increased incidence and prolonged periods of dementia and enfeeblement, fewer family caregivers ready and willing to care, and a public policy that regards growing expenditures on the elderly as unwarranted or unaffordable. Under such circumstances, it may prove more rather than less difficult to do right by our parents and spouses in their long, last act of life. Yes, the future is unknowable and uncertain, but we know the stakes and they are surely high.

C. Ethical Commitments and Wise Public Policy

As we chart our uncertain course into an equally uncertain future, not everything is or should be up for grabs. Certain moral aspirations and moral boundaries-always to care, never to abandon or betray those entrusted to our care-should guide us in the days ahead. But these moral aspirations always take shape in real-life circumstances, where resources are limited, people are tested, and competing human goods call out for our attention and devotion. We cannot do without awareness of the likely perils. We cannot do without ethical guidance.

Looking ahead, American society needs to avoid two grave dangers: We need to prevent the worst kinds of betrayal and inhumanity toward the dependent elderly-such as relying on institutions that "warehouse" elderly persons, promoting assisted suicide as an answer to disability, and embracing euthanasia as a solution to the perceived social and economic burden of dependent persons. At the same time, as we aim at the best care possible for the elderly, we must avert the danger of intergenerational conflict over scarce resources, meeting our obligations also to our children and grandchildren, sustaining other social goods, and avoiding a major new drag on the economy that would (among other things) weaken the economic capacity of working families to provide care for their loved ones. Put positively, we need to encourage families and local communities to become responsible caregivers and to sustain one another in giving care, while recognizing the role of the state in providing a safety net of decent care for those who lack adequate economic resources or a network of family support.

Many Americans continue to believe that people should be self-reliant and care for themselves and their families without state intervention or support. But the looming crisis in long-term care may challenge these beliefs, unless government provides additional assistance to support caregiving families. We are rapidly moving into a situation in which-due to the genetic lottery and the vagaries of disease, and through no fault of their own-nearly half of society's families will face a demand for long-term care that they simply will not be able to meet without expensive professional help, while the other half will not. In a society of ethical caregiving, the government must accept a duty to find, encourage, and institute measures that would help share the economic part of this burden more equally.

II. Conclusions and Recommendations

We come, then, to a summary of our conclusions and recommendations, some concerning individual caregiving, some concerning procedures and policies regarding advance directives and advance care planning, and a final recommendation to promote further national attention to the subject of aging, dementia, and caregiving.

A. Individual Caregiving

Human beings who are dwindling, enfeebled, or disabled in body or in mind remain equal members of the human community. As such, we are obligated to treat them with respect and to seek their well-being, here and now. We should always seek to benefit the life incapacitated persons still have, and never treat even the most diminished individuals as unworthy of our company and care. Their well-being in the present is of course related to the ideals and wishes of their earlier life, but those past wishes and ideals do not alone determine what we owe them today. We should seek their present good, avoid doing them present and future harm, and make every effort-in the light of their own special circumstances and ours-to find the wisest and best form of care possible.

Caregiving always takes shape in the particular-involving distinctive individual patients and caregivers, in unique and often complicated circumstances-and there can be no single principle or invariable formula for discerning the best care possible in each and every case. In decisions large and small, loving prudence is required to discern the most beneficial course of action. But, as we argued in Chapter 3, there are certain moral guidelines and boundaries that should guide all caregivers, as they strive to do their best for the person now relying upon them. We highlight three crucial teachings.

1. Euthanasia and assisted suicide are antithetical to ethical caregiving for people with disability. These practices should always be opposed.

If we are to care well for the needs and interests of persons incapable of caring for themselves, we must erect and defend certain moral boundaries that prevent us from violating the people entrusted to our care: No euthanasia, no assisted suicide. These practices should be opposed for many reasons, and not only because of our moral (and legal) opposition to seeking the death and taking the life of innocent human beings. These taboos are also indispensable for giving good care: one cannot think wholeheartedly about how best to care for the life the patient now has if ending his or her life becomes, for us, always an eligible treatment option. This holds true not only in the vexing end-of-life cases discussed in Chapter 4. It is also indispensable for fulfilling our everyday obligations and performing our everyday ministrations in their care. It is indispensable to serving faithfully and loyally, deserving of the trust that has been reposed in us, whether as family members or as doctors, nurses, and hospice workers. A decent society will not seriously consider abandoning and betraying its most vulnerable and disabled members. A prudent society will not weaken those necessary restraints that prevent even the most devoted caregivers from yielding-out of weakness or frustration-to the temptation to abandon or betray those in need of their care.

Try as we may to be devoted caregivers, we are not saints, and-under the pressure of trying circumstances-even our best motives may lead us to betray or abandon altogether those who in their vulnerability depend on our care. Hence, we all need a shared moral world in which certain actions that undermine the solidarity of the human community are firmly beyond the pale. Or, to put the matter positively, it is only as we deny ourselves the option of "solving" intransigent social problems by ridding ourselves of those who manifest the problem, that we can train ourselves to cultivate with greater clarity and wisdom the capacities we have and the virtues we need for caregiving. A society that sets its face against abandoning those whose lives are in decline has a better chance of being a society that thinks creatively about the trajectory of life and the bonds between the generations, of remaining a society in which to live long is also to live well together.

2. The goal of ethical caregiving in the clinical setting is not to extend the length or postpone the end of the patient's life as long as is medically possible, but always to benefit the life the patient still has.

In caring for those who cannot care for themselves, our primary goal is to do everything we reasonably can to benefit their lives-from meeting basic needs and sustaining life, to easing pain and curing ailments, to offering comfort in difficult times and, in the end, keeping company in the face of looming death. Medical interventions that sustain life are, of course, often a benefit to those whose lives they sustain. But extending life and delaying death are not the only or primary goals that should guide caregivers, and there are times in which pursuing those goals would require imposing new and unjustified burdens on the patient. Caring well for the patient does not require always choosing interventions that would prolong his life or delay his dying, and sometimes best care requires forgoing treatments that may sustain life at the cost of imposing undue misery or offering palliative care that accepts an increased risk of an earlier death. Some interventions, even if life-sustaining, do not benefit the life the patient now has. Some interventions, aimed at benefiting the patient's present life, may not be life-extending.

Moreover, in caring for the life the patient now has, we care also for the manner and humanity of his dying. Feeding tubes and respirators are not always obligatory. Neither is hospitalization or the intensive care unit. And if these measures are used for a time, there are circumstances when it is morally permissible-and even, perhaps, morally required-to desist. Dying as well as possible-or, more modestly, in as little misery as possible-is also one of our concerns and cares. Even as we must never seek or aim at the patient's death, so we are also under a positive obligation not to impose treatments that would unduly burden the patient, make his dying more difficult, or otherwise deprive him of a more peaceful end of life or of final hours in the company of those who love him. Dying, like living, is a human matter, not merely a medical or technological one.

3. The clearest ethical grounds for forgoing life-sustaining treatments are an obligation to avoid inflicting treatments that are unduly burdensome to the patient being treated and an obligation to avoid treatments that are not at all (or not any longer) efficacious in attaining their desired result.

As caregivers, with necessarily limited powers to fix what is broken, we must distinguish between the burdens of disease (which we cannot always control) and the burdens of treatment (for which we are fully responsible). There are some burdens and some forms of suffering that we cannot make disappear, despite our best efforts. Because our powers of cure are limited, sometimes all we can do is stand with the patient in her days of trial, always seeking to minimize those burdens we cannot fully eradicate. But where we do intervene with medical treatments or dislocations required to obtain them, we are under an obligation not to add unduly to the patient's existing miseries and troubles. And, of course, we are also under an obligation not to intervene uselessly. Those interventions that cause undue burden or fail to benefit the life the patient still has can be, and often clearly should be, forgone. Judging when this is the case is always the task of prudent caregivers, making conscientious decisions in particular circumstances for particular patients.

B. Procedures and Policies: Ethics Committees, Professional Societies, Judges, and Legislators

The ability to care well for people who can no longer care for themselves depends on many factors-economic, medical, social, cultural, institutional, civic, legal, and ethical-many of which are also influenced directly or indirectly by policy decisions. Most of these matters lie beyond the scope of this report, which is devoted mainly to the ideas and practices of ethical caregiving. In the realm of public policy, we have confined our attention to examining critically the legal instrumentality of written or formal advance directives. We here summarize our key findings and offer some forward-looking recommendations to ethics committees, professional societies, judges, and legislators involved in developing or interpreting policies and procedures relevant to advance directives. In the end, we recommend also the search for alternatives that focus more directly on creating an economic, civic, and institutional environment in which best care for the patient now here is the moral and medical aim and in which the chances of providing such care can be significantly increased.

1. Advance instruction directives (or living wills), though valuable to some degree and in some circumstances, are a limited and flawed instrument for addressing most of the decisions caregivers must make for those entrusted to their care.

Living wills, although much talked about and recommended by many people, are not a panacea. They address, at most, but a small fraction of the decisions caregivers must make for incapacitated persons. Even if everyone executed a living will, and even if the instructions were followed as written, the big questions of long-term care and ethical decision-making would not disappear or become readily manageable: there are too many situations in which following orders is not the best way to give care, and giving care always requires more in terms of resources, character, support, and judgment than any legal instrument can possibly provide. We firmly believe that the American people-both potential patients and potential caregivers-should not be misled or encouraged to think otherwise. Moreover, in addition to the practical difficulties with living wills that we exposed in Chapter 2, the duties of actual-as opposed to imagined-human caregiving always arise within concrete situations experienced in the present, not conjured situations imagined in the past. Precisely because the obligation of caregivers here and now is always to the patient before them here and now, instructions written long in advance can rarely be simply authoritative or dispositive.

To be sure, a few of the difficulties with living wills could be ameliorated by improved and more prudent drafting: for example, every writer of a living will should be asked to consider writing into such a document-after, of course, discussing it with the relevant parties-a provision acknowledging that the wishes expressed in the document are based on incomplete information and explicitly authorizing family members and clinicians to override the specific instructions if they judged it would serve the patient's present welfare to do so. Also, rather than write blanket exclusions of specific kinds of potential treatment interventions, advance instructions might explicitly allow for temporary trials of certain treatments, permitting the patient's caregivers to see if the treatments might actually be beneficial without creating a situation in which the treatment cannot be easily stopped. But even such improvements do not address the fundamental limitations and shortcomings of advance instruction directives, which can never replace prudent judgment by devoted caregivers about what a patient now needs. Ethics committees, drafters of professional guidelines, policymakers, and legislators at both the state and federal levels should address these failings and search for more practical and responsible alternatives.

2. Advance proxy directives are much more valuable and should be encouraged.

Instead of attempting to specify what should be done, advance proxy directives specify who should make crucial decisions on our behalf. These instruments ratify our fitting desire to be placed in the hands of loving caregivers whom we trust with our well-being when we can no longer act to promote it ourselves. Naming of proxy decisionmakers provides clear identification of who shoulders responsibility to act for the patient and makes it clear to physicians and others with whom they must deal. Such knowledge makes it much more likely that there will be the desirable discussions between family and professional caregivers at all important junctures of treatment and care.

3. Beyond legal instruments drafted and devised by individuals, we need to develop policies and procedures that encourage ongoing discussion and coordination among all relevant parties-including family members, health care professionals, social service providers, and, where possible, the patients themselves.

More important than the execution of such legal instruments is a process of advance care planning and full discussion, covering not only "end-of-life" decisionmaking but the whole range of caregiving realities-including questions about assisted-living, home care, medical preferences, finances, scheduling of available caregivers and respite care, and possible eventual transfer to a skilled nursing facility. Such planning in the early stages of illness can often include the patient, who can make known his greatest hopes and fears and who can gain much needed reassurance that he will have loyal care and company throughout his illness. Such planning should not be regarded as a rigid set of prescriptions for future care, since flexibility is always necessary. But wise planning in advance can sometimes improve the circumstances in which caregivers eventually make evolving and often unpredictable decisions, by thinking ahead about the range of caregiving options that may one day become relevant or necessary.

4. Ethics committees called upon to give advice to doctors and families, and judges obliged to adjudicate difficult and often tension-filled cases involving decisions about life-sustaining treatment, should do everything possible to ensure that surrogate decision-making focuses as much as possible on the best care for the incapacitated patient in his or her current condition.

Hospital-based ethics committees are frequently called on for advice regarding ethically difficult treatment decisions, often about the use of life-sustaining treatment. Professional societies often formulate practice guidelines for physicians treating incapacitated patients. Guideline drafters and ethics committees should always focus on the present welfare of patients. They should be concerned less with trying to figure out what the incapacitated patient would want done, were he now to be consulted in his own case, and concerned more with discerning what the incapacitated patient now needs in order to serve best the ongoing, if dwindling, life he now has. Judges who must hear cases in which there is an unresolved dispute about best treatment would also do well to make sure that the course of action recommended does not overvalue "precedent autonomy" or past wishes and pays proper regard to what best care owes this human being in his current situation.

Moving from individual cases to general policy in this area, state legislators should be cautious about putting more state authority and resources behind advance instruction directives. They should focus instead on standards governing decisions for patients who lack such directives. State law should be responsive to the reality that decisions at the bedside are almost always guided by proxies seeking to do what they believe the patient would have wanted or what they believe now best serves the patient's welfare. Lawmakers should give proxies, families, and other informal surrogates the necessary authority and discretion to resolve treatment dilemmas, while always encouraging those proxies and surrogates to seek the best care possible for the patient now here and always treating best care as the primary aim in disputed cases. Congress should revisit the Patient Self-Determination Act of 1990 and consider amendments and revisions that recognize the authority of informal surrogates to decide on behalf of incapacitated patients and that promote the "best care possible for the present patient" as the basic standard for clinical decision-making. This federal statute, which requires health care providers to notify patients about advance directives, was intended to increase patient involvement in treatment decisions, chiefly by providing patients with the opportunity to express their wishes ahead of incapacitation. Experience has shown, however, that these well-meant measures have not had much practical impact and have been ineffective in promoting better care for incapacitated patients.

5. Good long-term care requires willing and able caregivers, community supports, caregiving institutions, and social policies that go beyond advance directives and beyond even responsible advance care planning. Public policy must address these issues directly.

Improved legal instruments for decision-making, and more capacious and comprehensive forms of advance care planning, will not by themselves enable even the most devoted family members to do their work well. The ability of family caregivers to give proper care to persons with dementia depends greatly on the economic, social, and communal resources available to them and to their professional caregivers: for example, public and private health insurance that fits their special needs; affordable long-term care insurance; personnel and funds for respite-care; appropriate institutional housing and care-giving facilities; home care services; technologies devised to assist in giving basic bodily care; faith-based or civic support groups for patients and families; the availability of health care providers who can give continuity of care and comprehensive oversight of medical attentions; and, of course, vigorous support for biomedical research into the prevention and treatment of the various forms of dementia. Not having explored any of these issues in any detail, the Council is not now in a position to make legislative or policy recommendations in these areas, either about what should be tried or about how it should be paid for. However, our recognition of the importance of tackling these matters is one of the reasons for our next and final recommendation.

C. Presidential Commission on Aging, Dementia, and Long-Term Care

This report on ethical caregiving began by calling attention to the challenges our society may soon face as the population of elderly persons in need of long-term care grows. With the impending retirement of the baby boom generation, we see an urgent need to begin planning for the likely strain on families and institutions that may very well result from the unprecedented combination of greater longevity, increased incidence of dementia, the decreasing ratio of active workers to retired persons, the increasing cost of care, and the looming shortage of paid and unpaid caregivers.

We hope that our report has performed an important public service by heightening the visibility of the problems that can be expected to arise, by drawing attention to their often-neglected ethical dimensions, by pointing out the limited value of advance directives, and by suggesting some guidelines for what should be considered good care in a decent society.

And yet peering into this, our future, leaves us more humbled than certain of what course to take. We have offered key and, we think, quite critical advice in those areas for which our Council is best suited to give guidance. But our work has also opened up before us a series of questions touching upon areas that must be taken up by and in conjunction with others-by experts in demography and economics, and above all by policymakers. Intensive study and planning are required if the nation is to avoid a destructive conflict between generations and the neglect or abandonment of the frail elderly. We also recognize that the ethical analysis we have provided is of limited value in the absence of adequate caregiving institutions and familial caregivers with the requisite character and resources. Therefore, we are recommending as a next step the establishment of a Presidential Commission on Aging, Dementia, and Long-Term Care.

To meet the challenges of our aging society, we need first to face up to their existence. Although most American families are already all too familiar with this subject in poignant personal ways, we as a nation have not yet addressed this topic squarely in our public discourse. It is time for public acknowledgement, at the national level, of the seriousness of the challenge. More important than raising consciousness, it is time for careful research, sustained inquiry, creative innovations, and responsible collective action. A Presidential Commission on Aging, Dementia, and Long-Term Care could launch such an effort by undertaking a careful and comprehensive study of this entire subject-in all its aspects-and by offering feasible and sensible recommendations for innovation and reform.

The first mission of such a body would be to collect reliable data and to commission empirical research (1) to understand and assess the demographic, economic, and policy realities of the present, (2) to make reasonable projections about the challenges of the future, (3) to review and evaluate the economic and human resources available to meet them, paying attention to the hard questions about priorities, and (4) to identify and assess as models the best practices that are currently in use or in development in various communities around the country. The body should pay special attention to the social challenges of providing long-term care for persons with dementia and debility, once the baby boomers enter old age.

The second mission would be to develop and recommend feasible policy reforms, whose primary aim would be to improve the capacity of families to care for their loved ones, rewarding and supporting their efforts by promoting institutions and practices-such as long-term care insurance, community-based respite care programs, and a flexible menu of long-term care options-that can assist caregivers in their task. It should pay special attention to the needs for continuity of care and the importance of fostering cooperation among families, professional caregivers and caregiving institutions, and faith-based communities. At the same time, the commission should look for ways to improve the existing safety net for those who lack adequate resources to care for themselves.

The challenges ahead are ethical, social, economic, and medical. Accordingly, the Commission's members should include persons knowledgeable in these fields. Where it lacks the expertise, it should take testimony and seek advice from people with knowledge and experience in all the relevant areas, including, among them, the following: the demography of American society; the changing prevalence of chronic disease and trajectories toward death; biomedical research into the diseases and disabilities of old age (especially Alzheimer's disease and the other senile dementias); the design and management of long-term care institutions; best practice standards for clinical care for the frail elderly, especially those with dementia; nursing and para-professional recruitment and training; the changing structure of modern family life, with special attention to effects on available and likely caregivers; ethical caregiving at the end of life, including the experience of hospice care; the economics of old age; the wealth of baby boomers as they reach retirement; options and costs of private long-term care insurance; the effects of tax policy on incentives to save for old age; the rules governing Medicare reimbursements and Medicaid eligibility; the role of faith-based institutions in caregiving at the end of life; community based respite-care programs for caregivers; and local, ethnic, and religious differences in expectations and practices regarding eldercare.

We are well aware that Presidential commissions, like advance directives, are not a panacea. They have their occupational hazards and their temptation to grandiosity and radical "solutions." The commission proposed here should therefore proceed boldly but modestly, mindful especially of the fact that old age and dying are finally not problems to be solved, but human experiences that must be faced. The commission should also always bear in mind that the demands of long-term care exist alongside many other civic goods, and that what is practically possible and publicly responsible will fall short of some imaginable ideal that could be pursued if resources were unlimited or if our society faced no other serious challenges. Indeed, the commission's charge should require it to assess the potential unintended long-term costs of providing public long-term-care benefits, to make sure that any public benefits go to the truly needy, and to see that nothing is done to undermine familial and intergenerational responsibility and self-sufficiency. Our goal is to strengthen caregiving by loved ones, not to replace them.

We also recommend that the commission avoid any temptation to propose a complete reworking of the entire American health care system or wholesale reform of Medicare and Medicaid. Rather, in developing its recommendations, it should target those focused but crucial reforms that could have a large, cumulative effect in reshaping existing policy and behavior. The targeted reform, which seems small today, is often the best reform-both because it is the only practical reform possible in a society resistant to radical transformation and because responsible small steps taken early can lead us on a path toward permanent and sustainable improvements.

The challenges of caregiving in our aging society deserve and demand the attention of our nation's leaders at the highest levels. They will soon confront every American family, and we would be most wise to give them careful and most serious thought before they are fully upon us.

*          *            *

Aging, dementia, and dying, we are well aware, are not the cheeriest of topics. We recognize that it would be much more pleasant to look the other way and perhaps much easier to treat the topic in purely economic terms. But denial is not an option, and much more than money is at stake. Millions of American families already know the score and are struggling, often magnificently, to do the right thing for their loved ones, all on their own. It remains for the nation to acknowledge the need and rise to meet it. A mature and caring nation, concerned about staying human in a technological age, will not shy away from its responsibilities. If asked, "Who cares?" the answer must be, "We do."

 


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