Lingering Longer: Who Will Care?

By Leon R. Kass
Thursday, September 29, 2005

American society is aging -- dramatically, rapidly and, largely, well. More and more of us are living healthily into our seventies and eighties, many well into our nineties. With the baby boomers approaching retirement and birthrates down, we are on the threshold of the first-ever "mass geriatric society." Historically speaking, it is the best of times to be old.

Yet the blessings of greater longevity are bringing profound new social challenges, several of them highlighted in "Taking Care: Ethical Caregiving in Our Aging Society," a report issued today by the President's Council on Bioethics.

Although we are living healthier longer, many of us are also living long enough to suffer serious age-related chronic illnesses, including dementia. Alzheimer's disease afflicts more than 4 million Americans, and the number is expected to triple before mid-century. Already the most common trajectory toward death -- experienced today by 40 percent of us -- is a lengthy period of debility, frailty and dementia lasting not months but years. Already millions of American families are struggling nobly to care for their incapacitated loved ones.

Yet precisely as the need for long-term care is rising, the number of available caregivers -- professional and volunteer -- is dwindling. This is due in part to smaller and less stable families, greater geographical mobility, and the career demands of men and women. A crisis in long-term care will soon be upon us.

The shortage of caregivers is made worse by our cultural refusal to honor the need for care. As a society, we have preferred to place our hopes in programs that promote healthy aging and in scientific research seeking remedies for incapacitating diseases. We offer little communal support to the millions of Americans, more each decade, who give demanding daily care to aged parents or spouses. Our culture's generalized anxiety about old age and dying focuses all too narrowly on end-of-life decisions and on preserving the fiction of autonomy in the face of unavoidable neediness.

Public discussion of these issues is often driven by the "worried well," who live in fear that the curse of untreatable dementia and disability will descend on them, to ruin their final years, deplete their savings and burden their loved ones with the duty of caring for them. In response to these concerns, our society has embraced the strategy of living wills, through which individuals try to specify how they wish to be treated should they become incapacitated. We are encouraged to believe that if we only execute the proper documents, we can remain in control of our future and avoid unseemly dependencies and indignities.

But this emphasis on autonomy ignores the truth of human interdependence and of our unavoidable need for human presence and care, especially when we can no longer take care of ourselves. The moral emphasis on choosing in advance needs to be replaced with a moral emphasis on caring in the present. The emphasis on independence needs to be supplemented with a commitment to serve the lives of those we love, regardless of their disabilities. Written directives eschewing "heroic measures" cannot substitute for reliable and responsible caregivers on the spot, devoted to the daily welfare of the incapacitated person.

To help caregivers in their difficult task, the report also articulates the goals and principles of ethical caregiving for those no longer able to care for themselves. We emphasize both the singular importance of seeking to serve the life the patient still has and the moral necessity of never seeking a person's death as a means of relieving suffering. Caring wholeheartedly for a frail patient or a disabled loved one is incompatible with thinking that engineering their death is an acceptable "therapeutic option."

At the same time, we emphasize that good caregiving does not always oblige us to elect life-sustaining treatments, if such interventions impose undue burdens or interfere with a comfortable death of someone irretrievably dying. Even when the doctor's black bag of remedies is empty, care remains an inviolable duty.

But sound ethical principles are not enough. And family caregivers should not have to go it alone. Our ability to care well for loved ones with dementia depends greatly on the economic, social and communal resources available to us -- such as affordable insurance for long-term care; respite for the caregivers; reliable and reimbursable home care services; faith-based or civic support groups; technologies to assist in giving basic bodily care; and health care providers who will deliver continuity of care and oversee all medical and social service needs. Those who lack adequate resources to care for themselves need and deserve better public support. Incentives -- including better training and better wages -- must be found to increase the supply of nurses and other non-familial caregivers.

Addressing the crisis in long-term care will be difficult and costly. It is not yet clear what roles the federal and state governments should play, though we should certainly reexamine how current government policies -- such as Medicare reimbursement schemes -- fail to support the most needed kinds of care. And even as we move to support the elderly, we can ill afford to neglect the young, who, unlike the old, have few organized voices to speak up for their needs. We must at all costs avoid a conflict between the generations over scarce resources.

To help think through these very complex issues, we need first to face up to our dilemma. We need sustained research, hard thinking and a creative search for achievable reforms. And we need national leadership at the highest level. Accordingly, the report calls for a presidential commission on aging, dementia and long-term care -- to focus the nation's attention, gather the relevant data, and catalyze the ongoing activities of relevant agencies and organizations.

Yet we must also remember that the challenges of an aging society are finally not economic and institutional but ethical and existential. Against our confidence in mastery and control, we need to remember that old age and dying are not problems to be solved but human experiences that must be faced. In the years ahead, we will be judged as a people by our willingness to stand by one another, not only in the rare event of natural disaster but also in the everyday care of those who gave us life and to whom we owe so much.

The writer is chairman of the President's Council on Bioethics and a fellow at the American Enterprise Institute.

© 2005 The Washington Post Company