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In Terminal Illness:Will You HaveThe Right To Decide?Levinson"The right to die" has becomeunfortunate shorthand for a fundamentalconcept: the right of eachpatient to determine the course ofher or his own medical treatment.As little as 15 years ago, practicallyno one in America—layperson orprofessional—considered such aright. Now, thanks in large part tohorrifying instances of enforcedmedical treatment that have beenwell publicized, it is safe to say thatalmost every thinking adult is awarethat today's medicine may be aslikely to prolong the physical andemotional ordeals of the dying processas to cure illness or alleviatesuffering.Technology may have outstrippedthe community's shared andexplicitly stated moral code, but weargue that the Constitution clearlyguarantees you the right to refuseunwanted medical treatment. Implicitly,you also have the right, bymeans of such prior written instructionsas the Living Will, to determinethe course of treatment in case youare rendered comatose or otherwiseunable to state your wishes directly.In other words, legislation is notnecessary to establish your right; itexists.Yet we see Claire Conroy, an 84-year-old, terminally ill, nursing homepatient "with no cognitive abilities",given forced nutrition in New Jersey.In California, we see 70-year-old WilliamBartling, dying from five diseases,physically restrained andforced to remain on a respirator,although he and his wife articulatelyexplain that each understands theconsequences of his decision to beremoved from the device. Sadly, similarcases are occurring even as this isbeing written. Perhaps more to thepoint, many readers of this magazinemay have had experience with casesof this sort.What is the answer? We believethat the public, if educated, will seethe futility of much of today's"advanced" medical treatment anddemand that physicians and hospitaladministrators act more rationally intreatment of the terminally ill.Already, more and more people aredetermined to commit their treatmentwishes to paper. Increasingly,patients and members of their familieshave shown that they are notwilling to accept unquestioningly thetreatment decisions of paternalisticor otherwise unresponsive physicians.But the fact remains thatmany patients are not yet educatedor emboldened, too many physiciansare implacably committed to treatmentfor the sake of treatment, toomany attorneys are interfering (forwhatever reasons, altruistic or lessso) in medical decision making, andtoo many justices are uninformedabout the issues. Given the immediateattitudinal climate, you are bestadvised, quite simply, to look out foryourself.On the issue of whether or notthere is a difference between thetreatment accorded men andwomen, the wry but honest replyhas to be: "No. Either is just as likelyto find treatment wishes ignored."After dealing with several cases aweek for almost a decade, I have theimpression that it's usually not sexthat matters so much as the intrinsicallyvulnerable status of "patient".It would appear that in this realm ofhuman activity, at least, both sexesare equal: equally liable to becomevictims of the experts and appendagesof the demanding machine.On the other hand, women maybe more likely to encounter enforcedor unnecessarily protracted treatment,simply because they livelonger and, in general, tend to diefrom lingering illnesses. For example,heart attacks may carry off a sizeableportion of the male populationin a single dramatic episode. Womenare somewhat more likely to findthemselves bedridden for years, perhapsin a nursing home. They aremore likely to spend their last yearsin some stage of senility, unable toarticulate, much less enforce, theirwishes about medical treatment. AsDoris Portwood, author of Commoncontinued on pg. 21LOVE & DEATHON 86I am overhearing a phone conversation—thetone of the speakeris intimate—concerned—lovingparental...long complicated wordsare being spelled out—R ETI N ITIS-CHE MO THERAPY—LYMPH-AD E N 0 PAT H Y—repeated againand again.The voice on the other side ofthe phone was BOBBY'S—and he hadmissed his appointment "Is yourlover with you now—does he knowyou will probably have to be goinginto the hospital?" The question isasked gently but firmly. The speakeris a nurse practitioner named Gary.His bright red curly hair, plaid shirt,glasses and jeans place him justabout anywhere. His name tag andstethoscope around his neck —thephone at his ear—the place I amstanding in—place him on ward 86at San Francisco General Hospital—the Oncology Unit—The AIDS Ward.I knew I wanted to go to SanFrancisco General a year ago—AIDShad been in the papers. The issuewas argued politically, medically andphilosophically. Susan Sontag used itas a focus of social critique. Illnessas a metaphor—it had shades of themedieval black plague—it was controversial—dangerous—andit wasprofound—The profundity touched me onemorning when I was dressing andlistening to the radio. It was aninterview with a Shanti counseloron the AIDS ward. She was sayingsomething extraordinary—somethingthat made me pause in mydaily ritual—something aboutthe fact that working with AIDSpatients made her realize that if shewould choose her own death—shewould want to know she was dying—for one year, she would want toexperience the clarity, the restructuringof priorities—the immediate'placement of things important andnot so important that she had beenwitness to by working with some ofher AIDS patients.And then of course there wasthe sexuality issue—the fact that alarge majority of the AIDS patientswere male homosexuals—an easytarget for the right wing idealogues—Falwell's proof that God was punishingour society for its decadence.Not only was abortion a blight vis-