To the Editor:
Eric Cohen and Leon R. Kass inveigh against two proposed solutions to the growing societal problem of debility in old age; we might call them the technical fix and the autonomy fix [“Cast Me Not Off in Old Age,” January]. With the technical fix, medicine promises cures for common scourges of old age like dementia, heart disease, and cancer. With the autonomy fix, patients use living wills to specify in advance what treatments they do not want administered to them in the future, thus hoping to avoid the indignities of old age.
I agree that we should not delude ourselves into thinking that medical science (and, I would add, exercise and diet) will guarantee us a good old age. And I agree that an individualistic worldview that encourages people to act in isolation to try to control their destiny is a flawed and impoverished one as applied to the elderly. My main disagreement with the authors is over the implications of their profound observations.
Messrs. Cohen and Kass put the responsibility for caregiving largely on the shoulders of families. But while most care for elders is and will continue to be provided by families, and while viewing the elderly as part of families is an advance over seeing them as isolated entities, focusing on families is too narrow. As I argue in my recent book, The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies, it is not sufficient to emphasize (as Messrs. Cohen and Kass do) “giv[ing] care and comfort to those we cannot cure”; rather, we should strive to enable the elderly to engage with society to the extent possible within their limitations. This requires a broad societal response, something that the authors only mention as an afterthought.
This would require us truly to modernize Medicare so that chronic diseases, which make up most of what ail the elderly, can be attended to with the same degree of sophistication as are acute illnesses—not in the vain hope that chronic disease will be cured but in order to maximize the functioning (vision, hearing, mobility, etc.) of the elderly.
A broad approach for the physically frail might include linking them through the Internet to others who might benefit from their experience and counsel while offering aid in return. For the cognitively frail who cannot live independently, we need to develop assisted-living facilities and nursing homes that do more than just guard the health and safety of their residents. Allowing individuals with severe cognitive impairment to lead meaningful lives requires nurturing whatever residual spark of their fuller selves they retain.
Messrs. Cohen and Kass argue that the current best interests of patients with dementia should be given priority when it comes to decisions about their treatment. I generally agree with this position, although I think that there should be some acknowledgment of previously stated wishes. (The argument that living wills cannot protect against geriatric debility is a bit of a straw man, since their intent is typically to avoid burdensome interventions near the end of life, not to promote withholding all treatment at the first sign of frailty.) But Messrs. Cohen and Kass fail to recognize that determining a patient’s current best interests requires that we establish objective standards.
We need not resign ourselves to leaving families “not wishing to condemn the worth of people’s lives, yet not wanting to bind them to the rack of their growing misery . . . with no simple formulas for finding the best course of action.” The medical profession could develop guidelines about what kind of treatment is too much and what is too little. By setting the upper and lower bounds for reasonable treatment—leaving ample room for the individualized weighing of benefits and burdens and the exercise of choice within the extremes—we can spare families the “most poignant dilemmas” that Messrs. Cohen and Kass seem to feel they must inevitably face.
Muriel R. Gillick, M.D.
Harvard Medical School
To the Editors:
Eric Cohen and Leon R. Kass’s analysis of issues related to care for the elderly is very timely. They are to be commended for taking a large view of a contemporary problem and addressing it in the context of history and tradition. But I fear that they may be guilty of a failure to hear what patients and families are really saying when they discuss things like living wills, health proxies, and a “right to die.”
Messrs. Cohen and Kass worry that these instruments are not widespread enough to be clinically feasible, and that they undermine the individual medical guidance and emotional support that are required to care thoughtfully for aged parents and relatives. But the increasing prevalence of patients’ dying in the hospital rather than at home means that families are forced to learn the jargon of the medical institution and use it in place of the familiar, plain language of home and family. Most people who use living wills are not articulating an attack on tradition or the nature of man.
Caregivers are well served by trying to determine the real-life issues involved in requests for a living will or health proxy. People’s needs can thus be identified, translated into communicable terms, and managed in real time as necessary. Engaging people on their own terms in this way may actually facilitate the responsible confrontation with the inevitable facts of aging that Messrs. Cohen and Kass advocate.
I am a pediatric nephrologist, and do not have a great deal of experience with debilitated patients. But I have witnessed the frustrations that come out of families’ encounters with the legal and administrative machinery of the modern hospital. Often their only recourse is in living wills, proxies, and a patient’s bill of rights, imperfect as they are. As we work to find better ways to cope with the care of the elderly and infirm, these instruments can serve a noble purpose.
Howard Trachtman, M.D.
New Hyde Park, New York
To the Editor:
Eric Cohen and Leon R. Kass lucidly confront the difficult issues that our society is likely to face as the parents of my generation of recent college graduates age. By placing the issue of caregiving in the broader context of the degeneration of familial responsibilities, they illuminate the inherent instability of broken families and the false promises of the welfare state.
It is imperative that we confront these issues within a sound moral and philosophical framework before we are confronted with the harsh practical consequences. I applaud Commentary for publishing a vital essay that stands against the bioethical demagoguery that has come to define our age.
Eric Cohen and Leon R. Kass write:
We thank our respondents for their thoughtful letters, which we take, for the most part, as friendly amendments to our argument.
We agree with Muriel R. Gillick that the primary goal of medicine for the elderly is maximizing function in the face of worsening debilities, not seeking to conquer debility itself. In our war against various diseases, we sometimes forget the importance of small improvements, including those that depend more on attentive care than on medical miracles. Dr. Gillick’s eloquent formulation—“nurturing whatever residual spark of their fuller selves [the elderly] retain”—nicely describes the kind of care we ought to provide.
We also agree that society has a central role to play in providing such care—both society writ large in social programs like Medicare and Medicaid and society writ small in the form of local communities, families, and the institutional settings in which many elderly persons spend their last days. And we agree that modernizing Medicare requires placing greater emphasis on the management of chronic disease, including better in-house nursing care and greater attention to treatments aiming to prevent multiple acute episodes.
But stating a goal and knowing how to get there from here are two different matters. Already, we face a future in which entitlements for the elderly will use up an ever-increasing amount of our resources, even as the wealth-producing, tax-paying, and caregiving populations decline in proportion to the dependent elders they must support. Our challenge is figuring out how to improve care while restraining, as much as possible, its costs.
Here we face an ambivalence in our own argument. Seeking the best care possible is a moral imperative, lest we define the debilitated elderly as mere burdens, unworthy of the resources we expend to make their remaining days as comfortable and meaningful as possible. Yet providing the best care imaginable would erode our capacity to meet other civic obligations. To emphasize the devotion of family caregivers, as we do, is not an effort to downplay the role of society in providing crucial resources and support to patients and families. It is simply to recognize that society must limit the kind of care it can provide, precisely because the demand for better care is insatiable.
This leads us to the question of developing “objective standards” of care. Dr. Gillick seems to misread or misunderstand our article when she claims that we “fail to recognize that determining a patient’s current best interests requires that we establish objective standards” for interventions near the end of life. To the contrary, we put forward several crucial objective standards: the moral obligation never to take active measures to end someone’s life; to avoid excessively burdensome treatments, even when they might extend someone’s life; to benefit always the life the patient still has rather than seeing life itself as a burden to be eliminated. But such standards need to be applied in particular cases, demanding loving prudence from doctors and family on the scene. This includes giving proper attention to the prior wishes of the patient, but without seeing the wishes of a past self as the only guide for caring well for the present one.
Perhaps the most difficult challenge will be defining standards of care in the policy arena, including what kinds of intervention Medicare will and will not cover. Dr. Gillick thinks it will be easy for “the medical profession to develop guidelines about what . . . is too much and what is too little.” We are not so sanguine. Are there really morally objective criteria for determining what degree of dementia disqualifies my mother from which sorts of medical intervention? Should our society accept across-the-board age-based or capacity-based grounds for denying care to the elderly?
Even if we could define such “objective” standards of care—and did our best to be guided by them—we will never be able to spare families “the most poignant dilemmas,” as Dr. Gillick seems to hope. No policy, no guideline, no protocol can liberate us from the anguish of letting a loved one die or seeing a loved one suffer under our watch. Only a heartless society can make its end-of-life dilemmas go away.
Howard Trachtman accuses us of not listening to patients in offering our critique of living wills, health proxies, and a “right to die.” But he seems to be hunting for more disagreement than may exist. For one thing, we explicitly endorse the wisdom of health proxies, understood as a way to empower those who will eventually or inevitably speak on one’s behalf. And we do not claim that most people who use living wills are “articulating an attack on tradition or the nature of man.” We simply argue, based on the best social-science data, that living wills are ineffective at meeting their own goals; that prior wishes are not the only or best guide to making future caregiving decisions; and that those who promote living wills, as opposed to those who use them, often do have a distorted understanding of human nature by emphasizing self-determination at the expense of human finitude and interdependence.
If living wills promote a deeper understanding of what it means to age well and care well, then we are all for them. If they help preserve even a dose of loving humanity in the face of the “machinery of the modern hospital,” then we endorse them. But the evidence suggests that living wills have largely failed to meet these noble ends, and that no legal instrument can liberate us from the human dilemmas of learning how to put ourselves in the hands of caregivers, and how to care for those who put their trust in us.