Taking Care: Ethical Caregiving in Our Aging Society by President's Council on Bioethics (309 pages, free at www.bioethics.gov)
When George W. Bush appointed the President's Council on Bioethics in 2001, he stacked it with conservatives who had already taken stands against abortion, embryonic stem-cell research, euthanasia, and assisted suicide. Nonetheless, I approached the council's sixth report, Taking Care, with an open mind after reading a column in The New York Times by David Brooks, who described the report as “a rebuke to the economic individualism of the right and to the moral individualism of the left,” and an assertion of “mutual obligation.” For once, I thought, conservatives and liberals might find common ground.
The report opens with a rich account of the “caregiving crisis” in America, and it was in these passages that Brooks found what he called a “declaration of dependence.” A healthy old age filled with tennis and travel, the council warns, is more likely to occur in advertisements for assisted living than in real life. In fact, “the most common trajectory toward death is the path of ‘dwindling,' of progressive debility, enfeeblement, and dementia, often lasting up to a decade.” As a result, most of us will eventually depend on others for care. And if we think we're going to be able to count on paid caregivers to make up for our smaller, scattered extended families, think again. Home health care is an unattractive field -- strenuous work, very low pay, and rarely with health benefits.
But after portraying the rise of dependence and the lack of care providers, the council declares all the related policy issues “beyond the scope of this report” and recommends that the president appoint another commission to study them. Instead, Taking Care focuses on choices at the end of life and not surprisingly opposes euthanasia, assisted suicide, and anything that smacks of hastening death for terminally ill patients. What is surprising, however, is just how reactionary the report is. It opposes living wills and aims to reverse the trend toward giving people greater control over their end-of-life care.
That trend goes back to the 1960s, when clinicians and laypeople began to question medicine's drive to keep patients alive as long as possible, even at the cost of painful and ultimately futile treatments. The movement for hospice care as an alternative to dying in hospitals grew from this impetus. In the 1970s, Derek Humphrey's suicide manual, Final Exit, became a bestseller because it offered the possibility of dying on one's own terms and of choosing an early death over a prolonged period of decline, incapacity, and suffering. Then came the movement for living wills and other advanced directives that allow people to specify their wishes about end-of-life care while they are competent to express them. The prospect of a lingering painful, immobile, demented, or brain-injured phase of life spurred the movement for assisted suicide. Why shouldn't people be able to get help doing what they want to do but can't perform themselves? Or why shouldn't they have help dying more peacefully and less horribly for their families than, say, blowing their brains out with a handgun or jumping off a roof? Together, these four movements -- hospice, Hemlock Society, living wills, and assisted suicide -- represent a powerful democratic expression of the wish for individual autonomy in old age, chronic illness, and disability.
Taking Care is a sly package. The preface states, “Our purpose is to provide a humanely rich account of the caregiving dilemmas -- social, familial, and personal -- and to offer some important ethical guidelines for the care of persons who can no longer care for themselves.” But actually, the council's main goal seems to be to prevent people from choosing death earlier than medical technology might allow or nature might ordain. Of all the ethical dilemmas in caregiving, the report zeroes in on one -- whether it is ever moral to hasten death, one's own or somebody else's. The council's answer is “no.” And of all the possible policy questions surrounding care in an aging society, the report addresses only one -- advance directives. The council wants to curb their use and have people cede their decision-making power to their caregivers if they become incapacitated.
In its first “recommendation” -- really a declaration -- the council says, “Euthanasia and assisted suicide are antithetical to ethical caregiving for people with disability … [and] should always be opposed.” The report talks incessantly of the need for “moral boundaries” and for putting certain actions -- helping people to die on their own terms -- “beyond the pale.”
Taking Care casts helping people to die as “betrayal” and “abandonment.” (These two words appear seven times in the language under the first recommendation; I lost count in the report as a whole.) A caregiver who helps hasten the death of the person she cares for, according to the council, invariably betrays a trust, and probably does so for her own convenience, to end the burdens of caregiving. In the report, merely considering helping another person to die is always cast as a “temptation.” Quasi-religious language pervades the report, giving it the feel of a sermon. The council introduces its concluding “moral guidelines” by saying, “We highlight three crucial teachings.” Ummm ... of whom?
Nowhere in the report do we glimpse the kind of tragic situations that gave rise to the social movements I mentioned earlier. In those situations, a caregiver who helps carry out a patient's strongly and clearly expressed wishes should be seen as fulfilling a trust, not betraying it. Many people feel that carrying out such wishes requires extraordinary moral courage. When my mother was dying of cancer, even though she had signed Do-Not-Resuscitate/Comfort-Care-Only papers and we'd had explicit discussions about her living will, I feared I wouldn't have the strength simply to sit by her side if she were to have a heart attack. For me, the temptation would have been to call an ambulance.
The most insidious feature of Taking Care is its attempt to stem the patient self-determination movement and to undermine the respect for individual autonomy that has been the bedrock of medical ethics -- and liberalism. What ties together hospice care, the Hemlock Society, assisted suicide, and living wills is the quest for personal autonomy. But, according to the council, “Self-determination has intrinsic limits in a civilized and decent society… Even a competent person's wishes should be limited by such moral boundaries… Our caregivers are not obligated to execute our wishes if those wishes seem morally misguided.” The council sees itself as the guardian of the moral boundary.
The council does make some concessions toward public uneasiness about heroic, last-ditch medical intervention. Its second recommendation asserts that the goal of ethical caregiving is not to prolong the patient's life but “to benefit the life the patient still has,” and its third recommendation states that caregivers have an “obligation to avoid inflicting treatments that are unduly burdensome” or not “efficacious.” Despite these concessions to humane standards of caregiving, however, the council's overriding message is to reject personal autonomy in end-of-life care by limiting the role of advanced directives.
Here's what the council recommends. First, people who write living wills should be asked to insert a provision allowing their proxy to override their wishes. Second, we should prefer “proxy directives” to living wills: “Instead of attempting to specify what should be done, advance proxy directives should specify who should make crucial decisions on our behalf.” (emphasis added) Third, ethics committees and judges should give less consideration to “what the incapacitated patient would want done, were he now to be consulted in his own case,” and more to “discerning what the incapacitated patient now needs in order to serve best the ongoing, if dwindling, life he now has.” These decision-makers shouldn't “overvalue ‘precedent' autonomy, or past wishes.” Fourth, state legislators should “be cautious about putting more state authority and resources behind advance instruction directives.” Last, Congress should amend the Patient Self-Determination Act of 1990, which requires hospitals to give patients an opportunity to complete advance directives. The council wants this law to recognize the authority of surrogate decision-makers to act in the best interests of the patient instead of honoring the patients' expressed wishes.
Granted, there are thorny issues in making judgments about what one might want in the future under circumstances one can't possibly imagine. But these recommendations would gut the purpose of advance directives -- to strengthen individual autonomy. I can surmise only that the council wants to limit advance directives because so many people use them to ask for help hastening their deaths.
For me and most of the people I know who've carried care responsibilities for dwindling spouses or parents, the most salient ethical dilemma we face is balancing autonomy and care long before incapacitation. How and when should you override someone's wishes not to have care if you believe her health and safety require it?
But this problem never shows up in Taking Care, which doesn't engage the real-life dilemmas of mutual dependence and obligation with the same moral passion it lavishes on preventing people from exercising control over their deaths. Conservatives are caught in a strange contradiction. They favor policies that would extend costly medical care at the end of life, while opposing the social policies that would enable many people to afford that care. As a policy analyst, were I to be on a presidential council on caregiving, I'd insist on one overriding moral duty -- society's obligation to fund decent care for those who need it and decent pay for those who give it.
Deborah Stone, research professor of government at Dartmouth College, is the author of The Disabled State and Policy Paradox. Her next book is The Good Samaritan's Secret.