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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-
ited on the sinner but now the Deityhad something even worse in theoffing—The "GAY PLAGUE."And then there was Calvin—myhairdresser. The strangeness hadgone on for about a year—I would becalled and told that he could notmake appointments or would haveto be late. He started to look thinnerand thinner. I would question him—he just said he wasn't feeling wellsomestomach problems or something.Then one day as 1 was sittingin his chair, while he went throughhis programatic cosmetic rituals—Ilooked up into the mirror and caughthis eye—and again asked him whatwas wrong—He didn't answer verbally—buthe answered—1 knew atthat moment that he had AIDS and Ialso knew that he was dying.Gary put the phone down—hehad been on it for almost 15 minutes—"You know that was Bobby —he'sincredible—30 years old—AND HEHAS FOUR FATAL ILLNESSES—anyone of which can kill him but he'sstill going strong. He'll have to comeinto the hospital for about a weekthis time." I looked at Gary—downthe hall which could have been anyward of any hospital anywhere inthis country—but it was different. Ihad felt the anticipation when I gotinto the taxi at Berkeley. It wasabout an hour's ride through the Bayarea over the Bridge into the City.The driver left me off at the frontentrance of the hospital."Where is ward 86?" Theattendant smiled broadly. "You knowyou're about the 50th person thatasked me today—but I'll do it onemore time." So he gave me directions—I had to go through the gatesmarked Family Planning Clinic—animmediate connection for me—theninto the elevator—press "86" Thedoors opened onto more conversation.TWo men seated at phone desks—similar medical words—phrases"no—you can't catch it by being inthe same room—yes we do havecommunity support systems"—intense, involved, caring.They were expecting me. Yesthey would let Dr. Kaplan know thatI was here. I sat down in front ofthem—In a strange way I felt comfortable—safe—thatI could trustthese people.Dr. Kaplan came out to greetme. I was referred to him through acontact in New York—he would bemy guide—my connection to thecontinued on pg. 20Combating ViolenceAgainst WomenThrough forums and conferences,women are exchanging informationon the many forms violenceagainst women can take and how tocombat it. Following are a few of theevents that have happened, or arescheduled. In February, Merle spokeat the Cafe Nexus in New York Cityon anti-choice violence, the future ofabortion rights in the United Statesand the media distortion of prochoiceissues. The forum wasarranged by Women's QuarterlyReview, a new feminist publication,and was attended by an enthusiasticand activist audience.In November:The First Annual Nursing ConferenceOn Violence Against Women will beheld at the University of Massachusetts,Amherst November 1-3. TheContraceptivesand the MediaIn May, CHOICES received informationfrom the Center for PopulationOptions which urged support topress for contraceptive advertisingin the electronic media and includedguidelines which have been endorsedby a number of organizationsinvolved in family planning and/orwomen's health issues. Unfortunately,the FDA has issued a moratoriumon prescriptive contraceptiveadvertising, thereby limiting theadvertising to over-the-countercontraceptives (OTCs). Although weare certainly very favorable towardcontraceptive advertising in all themedia, we must express certainconcerns:If only the OTC market is dealtwith, how can comparisons betweenproducts be made in an adequate,factual fashion? The public is beingonly partially educated. We agreethat this is better than censorship ofgoal is to provide a forum for nursesand other health care providersinvolved in the area of woman abuseto meet, share knowledge and ideas,and gain support for their work.Merle Hoffman will be a presenter atthe conference. Contact JudyWardlaw, Division of Continuing Education,University of Mass., AmherstMA 01003; tel: 413/545-0312.The 70th Annual Conference of theAmerican Medical Women's Association:"Violence: Dx and Rx" will beheld in San Francisco November 5-9.Merle will be conducting a workshopon clinic violence and the effects onwomen on November 6. For informationon the conference contact: LeaScialo, American Medical Women'sAssociation, 465 Grand Street., NewYork. NY 10002; tel: 212/533-5104.COall kinds of contraceptive information,but it could ultimately producenegative results if a "halo effect"surrounding OTCs is created byadvertising that the benefits, especiallyeffectiveness, are comparableto prescription contraceptives. It hasbeen evident through our work withhundreds of thousands of younggirls and women who have come toCHOICES since 1971 that misinformationcan, at times, be dangerous asno information at all.We would like CPO and other endorsingorganizations to consider theseissues, both by expanding the guidelinesand by becoming activelyinvolved in efforts to end the FDAmoratorium on prescriptive contraceptiveadvertising. It is only thenthat the female consuming publicwill be given adequate informationwith which to make their ownchoices.CD
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Page 5: Psychologically and intellectually,
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