Copyright © 2008, United States Conference of Catholic Bishops, Washington, D.C. 0845

Secretariat of Pro-Life Activities United States Conference of Catholic Bishops 3211 Fourth Street, N.E. • Washington, DC 20017-1194Tel: (202) 541-3070 • Fax: (202) 541-3054Website: www.usccb.org/prolife

often dissipate, especially when theworth of their lives is vindicated throughmeaningful employment or by families,friends and faith communities whoappreciate their gifts. Yet they wouldnever experience that positive change iftheir instructions to forgo life supportbecame effective first. And such direc-tives can lie around like loaded gunsready to discharge even after that changehas occurred.

Even people with long-standing disabili-ties may remain vulnerable to the sug-gestions of others that their lives are notworth living. Physicians may state thatthe patients’ “quality of life” is low.Families may make disabled membersfeel guilty about the burden of care thefamily must bear. Disabled people mayelect to forgo life-support in a living willunder the misguided notion that they areacting selflessly.

Advocates claim that the control overend-of-life care is valuable for disabledpeople because they are often the vic-tims of dependence. By forgoing lifesupport, such individuals actautonomously and thus affirm theirhuman worth. Yet it is a curious kind ofautonomy that liberates only by havingpeople make themselves dead. This doesnot empower disabled people; it consti-tutes a final surrender to helplessness.

Giving designees broad discretion tomake on-the-spot treatment decisions isalso an imperfect solution. They maynot respect the lives and wishes of thedisabled people they represent. Theymay think the disabled life is not worthcontinuing or seek some pecuniary gainby the person’s death.

Perhaps a better approach is for bothdisabled and able-bodied people tocomplete advance directives that pre-sume in favor of life support while per-mitting proxies to forgo such treatmentshould it become fruitless. That is,proxies should discontinue life-sustain-ing measures only if death is inevitableand imminent, the measures causeintractable suffering, or the financial

burden the treatment imposes on fami-lies is truly excessive in light of its limit-ed benefit for sustaining patients’ lives.

The PCBE observed: “We should nottoo readily acquiesce in a vision thatisolates us in the time of our dependen-cy, or a vision that rests on the falsenotion that individuals can preciselydetermine and manage every facet oftheir lives until the very end.” Disabledpeople should never accede to a visionof health care planning that disparagesthe lives they have lived. Any advancedirective should clearly display a pre-sumption in favor of a will for living.

The author is a professor at Temple University LawSchool where he teaches First Amendment andJurisprudence. Before joining the Temple faculty, heserved as a trial attorney with the Civil RightsDivision, U.S. Department of Justice. He is presentlyChair-Elect of the National Catholic Partnership onDisability and is himself blind.

The full-length version of this article is posted athttp://www.usccb.org/prolife/programs/rlp/mikochik.pdf.

In 2005, the President’s Council onBioethics (PCBE) issued a report criticalof living wills in advance care planning.It questioned whether patients couldknowingly elect to forgo life support inadvance of a hypothetical future in whichthey might become incapacitated. Insteadit called for greater use of proxy direc-tives (appointing family members orfriends to make medical decisions forincapacitated patients) as they offered thebest hope for accommodating the knownwishes and best interests of such people.

Absent from the PCBE’s report, however,was any discussion of the questions livingwills raised for people already disabled,especially whether their wills shouldinclude instructions to forgo life support.Those concerns are unique and somecomment about the use of living wills bysuch people is warranted. Before takingup that task, I will first explain some keyterms and then outline the analysis thePCBE put forward.

“Advance directives” are declarations bywhich individuals provide directions fortheir future medical care in the event theybecome incompetent. Through written“instruction directives” or “living wills,”

individuals set forth their preferencesfor or against certain therapeutic treat-ments and the considerations thatshould govern provision of their futuremedical care. Living wills can be quitespecific, particularly concerning the pro-vision or withdrawal of medically assist-ed food and hydration, CPR, mechani-cal ventilation, kidney dialysis and otherlife-sustaining procedures.

“Proxy directives” or “health care powers of attorney” are documents in

which individuals designate an agent tomake treatment decisions for them if

they become incapacitated.

With the advent of life-sustaining tech-niques, people became worried thatsuch interventions would merely pro-long their dying in an undignified fash-ion that could drain their families’financial resources. The “living will”was advanced during the 1960’s toaddress these concerns.

Advocates for living wills argue thatthey promote autonomy by enablingpatients to avoid overtreatment andcostly procedures that could drainresources they want to leave for familyand friends. Living wills also keep deci-sion-making on the patient’s shoulders,relieving family members of the stressand discord that could result if deci-sions to forgo treatment were theirs.

The PCBE, however, contended that liv-ing wills could not meet the goals theiradvocates set for them. They may notaccurately reflect a person’s preferencessince individuals are asked to predicttheir reactions to a host of maladiesthey cannot anticipate and medicalinterventions they may not understand.Treatment choices often change overtime, yet individuals may neglect toalter their living wills to reflect such

change. Finally, there is evidence thatincompetent patients often receive careinconsistent with their instructions.

The PCBE concluded that living willscould not ensure genuinely informedconsent because that requires a grasp offacts no one can truly know in advance.

The PCBE thus called for patients toplace their trust in another’s judgment tomake the best treatment decisions forthem, taking both their prior wishes andpresent circumstances into account bymeans of proxy directives. Such direc-tives take seriously patients’ desires toshape their future treatment by enablingthe family or friends they select to makesuch choices, while “emphasiz[ing] lessthe importance of selfdetermination andcorrespondingly more the importance ofsolidarity and interdependence.”

But disabled people can internalize soci-ety’s negative attitudes about their condi-tions and consequently choose in livingwills to forgo life support. This is mostevident at the onset of a traumatic injurywhen individuals first experience the lossof capacity. With pain management andrehabilitation, however, these feelings