The President's Council on Autonomy: Never Mind!

46 H A S T I N G S C E N T E R R E P O R T May- June 2006

moral landscape to which this ideologi-cal spectrum does not readily apply. It isa landscape not of principle and ideolo-gy, but of what the report refers to as“prudence”—one more of those classicaland early modern humanistic terms thatthe report tries to rejuvenate. Prudencerefers here to the moral imagination oftaking particularity, relationship, con-text, and difference seriously. The ethicsof long-term care offered here does notcome in a handbook, a set of guidelines,or a catechism. It adheres in the actual

practice of care itself and with a humancapacity for fidelity and presence in aworld of necessity and obligation be-yond consent, choice, and autonomouscontrol.

We still need a report on chronic ill-ness that does not focus so much onAlzheimer disease, as important as thatis. I also wish that Taking Care had moreto say about the justice and equity of thesystem that determines who gets careand who gives it (almost entirely unpaidwomen, of course). There is a rich litera-

ture in philosophy and bioethics that thereport never mentions but could haveengaged to good effect—work byMartha Nussbaum, Eva Kittay, VirginiaHeld, Iris Marion Young, Fiona Robin-son, and others, for example. Nonethe-less, there is a richness, a nuance, and asensibility articulated here that is vitaland not to be dismissed. Taking Careshould be read with care; it is a seriouscontribution to a bioethics of thehuman good.

In the aftermath of the media frenzysurrounding the sad death of TerriSchiavo, many Americans took a

step they had put off for years. They ap-pointed a health care proxy and signedan advance directive outlining theirwishes should they be unable to expressthem because of illness or accident.Some even had “the discussion,” tellingtheir proxy, other intimates, and perhapstheir physician their values and prefer-ences about decisions at the end of life.

Now the President’s Council onBioethics has issued a report that in ef-fect channels the late Gilda Radner play-ing ditsy Emily Litella on Saturday NightLive. When confronted with her sillymisinterpretation of events or words,Emily just smiled and said: “Nevermind!”

Although its title, Taking Care: Ethi-cal Caregiving in Our Aging Society, sug-gests a broader analysis, the Council’s re-port is at heart a sustained critique of in-dividual autonomy as a guiding princi-ple and its expression through advancedirectives when a person has Alzheimer

disease or dementia. It also takes directaim at assisted suicide and euthanasia, abaffling diversion since to my knowl-edge no one, least of all family members,proposes such actions for incompetentelders. Even in Oregon, where assistedsuicide is legal, it is available only tocompetent individuals. The relativelyfew who have taken this option have hadterminal cancer, not dementia.

The President’s Council may be thelast group in this country to discover thenews that has been a staple of academicand popular media for years: people areliving longer, and there are fewer familymembers to care for them. Reading thisreport, one might conclude that in anaging society, everyone is going to windup with Alzheimer disease. In fact, car-diovascular disease, diabetes, cancer, andarthritis are far more prevalent amongolder people and are more physically dis-abling and often more pernicious interms of quality of life. But it is the par-ticular power of dementia—the loss ofmemory, identity, and relationships—that casts the longest shadow and domi-

nates end of life discussions. Those whosuffer from dementia are indeed pro-foundly dependent, as the Council re-port stresses, but so are others with de-bilitating diseases, though in differentways. And people with Alzheimer dis-ease are not immune from the other dis-eases of old age and may suffer from anumber of chronic conditions.

The people who actually provide carefor those with advanced dementia—overwhelmingly family members—often find creative ways to communicatewith their relatives, protect them fromharm, and preserve their dignity. Theydo not need reminders about the hu-manity of their relatives and their needfor ever-present and present-orientedcare. The report states that “Many doc-tors and nurses find great reward in car-ing for these patients” (p. 38), but alsothat doctors may be “impatient” andnurses “overworked” (p. 202); it doesnot acknowledge that if one is lookingfor settings where people with dementiaare routinely considered “nonpersons,”one need look no further than the near-est hospital.

Almost every family member askedabout his or her experience in an emer-gency room or during a hospital stay willtell you horror stories of insensitive, dis-respectful care. To be sure, a patient withAlzheimer disease is a challenge to healthcare providers, who do not know whatto do about dementia and often do noteven recognize its signs. Following stan-dard medical practice, they banish to thewaiting room the very people—familymembers—who might be able to inter-pret and explain the patient’s apparentlymeaningless words and odd behavior.

The President’s Council onAutonomy: Never Mind!

by Carol Levine

review

May- June 2006 H A S T I N G S C E N T E R R E P O R T 47

The demented patient may leave thehospital with her pneumonia cured butmore confused and disoriented than be-fore. Even fully competent individualscan feel disoriented in a hospital; imag-ine how much more frightening it is forthose whose ability to comprehendwhat is happening to them is dimin-ished.

The report rightly acknowledges thechallenges facing family members andcalls for more public support, though itdoes not examine the voluminous liter-ature on dementia and long-term careand does not offer any specifics aboutpolicy changes. The report, issued inSeptember 2005, calls for a presidentialcommission on aging, dementia, andlong-term care. The Council does notmention and was presumably unawarethat the White House Conference onAging, preceded by months of minicon-ferences, was to be held just twomonths later. Some coordination mighthave been useful. In any event, mean-ingful action on long-term care doesnot seem to be a high priority in thisadministration.

But this report was issued, after all,by the President’s Council on Bioethics,and its contribution should be primari-ly assessed in terms of its ethics analysis(setting aside the critical connection be-tween ethics and policy). In this regardit restates some widely accepted princi-ples (treatment that is unduly burden-some to the patient is not morally re-quired; beyond legal documents, ongo-ing discussion among all relevant partiesshould be encouraged). Its primaryfocus, after its discursion into assistedsuicide and euthanasia, is on settinglimits on individual autonomy.

Autonomy has come in for somestern criticism in works by OnoraO’Neill, Rebecca Dresser, and Carl El-liott, to name a few. What bioethics hasgiven, bioethics seems poised to takeaway. Before bioethics came on theAmerican scene in the 1960s, doctorstypically made decisions alone and ac-cording to their own values; patients ac-quiesced or were never told their op-tions, and researchers had little over-sight. These were the good/bad olddays, and surely no one—including,

one hopes, the President’s Council—wants to return to them.

But what are we to substitute for au-tonomy? Trust. Solidarity. Community.Fine ideas, but what do they reallymean? Whom should I trust? Who willstand with me? What is a community?Community can be a source of supportfor its members but also an intimidat-ing force to outsiders. Apart from aclosed religious community, it is hard toimagine a “community” that one wouldtrust to set ethical standards for intense-ly private decisions about death. Lawsets boundaries for what is acceptableand what is not, but within thoseboundaries, individuals should be ableto act on their own beliefs and values.By and large these values are establishedwithin families and are acted on byfamilies, not communities.

“Appointing a proxy decisionmakeris almost always sensible,” the Presi-dent’s Council concludes, “while tryingto dictate the precise terms of one’s fu-ture care is often misguided or ineffec-tive” (p. 203). Ineffective, to be sure,when the documents are not known oravailable, when the individual has notdiscussed the general outline of valuesand preferences with the surrogate, orwhen the terms of the directive are dis-regarded. But misguided? Here thePresident’s Council has two targets: theindividual who prepares the advance di-rective, and the surrogate who inter-prets it. In effect, the report is saying toeach of us, “Even if you think you don’twant to be treated, you may changeyour mind; and even if you don’tchange your mind, it diminishes societyfor you to act in a way that wouldknowingly lead to your death.” And tothe surrogate decision-maker—settingaside the very clear examples whentreatment would not achieve any clini-cal benefit or palliation—the report issaying, “There is always something elseyou can do for this person-as-she-is-now, so the advance directive can ethi-cally be disregarded.” (This promptedme to note: “Reminder to self: Have an-other explicit conversation with ___and ___ to ignore this argument,should anyone dare to make it.”)

The report cautions against family

members making decisions to forgotreatment in their own interests, whichare seen primarily as financial. But theremay be financial interests in keeping aperson alive for as long as possible—forexample, to keep receiving Social Secu-rity payments, rent subsidies, or otherservices. Although the report acknowl-edges that circumstances differ, the fi-nancial examples cited in the reporthave a distinctly upper-class tone: adaughter is willing to forgo her inheri-tance or use her own money to pay forher father’s care; a children’s tuitionfund may be used to provide for homecare, presumably because the fund canbe replaced, but the care is needed now.Inheritances? Tuition funds? For thevast majority of American families try-ing to manage the crushing expenses oflong-term care and loss of income whencaregivers leave the workforce, these aresimply laughable nonissues.

Beyond financial issues, some familymembers may argue vehemently forcontinued treatment, even when itmight be deemed “unduly burden-some,” for their own truly selfish rea-sons. One adult child may hope againsthope for a reconciliation with an es-tranged parent; another may seek toprolong a relationship in which she atlast is more powerful than the parent; athird may gain some psychic benefitfrom being needed so totally. The re-port offers absolutely no guidance onmediating among family members whodisagree not only about what the pa-tient would have wanted but, in thePresident’s Council’s terms, about whatwould most benefit the person beforethem. The decisions made at such timesaffect more than the patient’s immedi-ate care; they determine how the familywill coexist after the patient’s inevitable,if not immediate, death.

If many Americans have signed ad-vance directives and appointed proxiesin the aftermath of the Schiavo case, itwas at least partly to avoid family con-flicts and to preserve family unity, notas an expression of unbridled individualautonomy. It would be unfortunate in-deed if the President’s Council’s new re-port made that goal less, rather thanmore, likely.