Though it hasn’t always been the case, there is now a well-recognized right of patients to refuse medical treatment. This includes treatments that the patient thinks are too risky, but

lfrontinn death: Who chooses, who controls-! Cowart; fobert Burt Hustings Center Report; JanlFeb 1998; 28, 1; Research Library 14

Who Chooses, Who Controls?

n 21 November 1996. Ilax Cowart and Robert Burt jointly delivered the Heather Koller Memorial Lecture at Pacific Lutheran University.

This was the first time that they spoke together in a public forum. D u (:owart now lives and practices law in Corpus Christi, Texas. In the summer of 1973, he was critically injured in a propane gas explosion that took his father's life and vcry deeply burned more than two-thirds of his own body. H e was Iefi blind and wirhout the u e of his hands. For more than a year Dax underwent extraordinarily painful treatments in the acute burn ward of two hospitals. Throughout his ordeal he demanded to die by refusing consent to his disinfectant treatments. Despite repeated declarations of competence by his psychiatrist, all his pleas were rejected. In 1974, while still hospitalized, he helped make rhe famous "Please Lrt M e Die" video, and irl 1984 a second video, 'Uax's Case.* In 1986 Dax Cowart received a law degree from Texas Tech Universir):

Burr and Cowart have corresponded over the coursc of several years on the subject of Dax's case and relared issues. They met for the first time during their trip to Tacoma, Washington for thc Koller M e m o r d 1.ecrure. 'The followilig is an cdircd transcript of their ~ u b l i c remarks.

-(:onin,nriag h ~ r h : WIJ f:hol)w. Who Co~i~rolr? A C)ialupc h r c m n !)ax (:rnvart 2nd Rokrt Burr.- Havinp Civtter Report 28. I ~ O . I ( lC)9U): I4 24.

14 +b. jT YGS , ' C N T F 9 R F P 0 Q . T

Robert Burt: Iz t me start at a place whcre 1 think we agree. Before 1974. the dominant at- titude of physicians toward patients was b!. m d large inrcnsely ciisrespecrhl of patients' wtono- my. The basic posture was paternalistic. Phvsicians knew what was best for patients, and the patient's job was just to go along. Dax him- self has been a critically important aftor and synlbol in identifying the wrongdoing in that at~irudc. and raising illto high social visibility thc proposition that auronomy is a vitally im- portanr value: patients are the central actors hcrr and physicians must attend to them in a r e s p ~ t h l and careful way. O n that point we agree.

' f i e place at which I get troubled or con- Fused is what exactly follows if we embncc this important norm of autonomy. Scam with a sim- ple version of w o alternari~a, perh.aps extreme alternatives, to try and sharpen what thc issues arc. O n r version of ~uronomv says: well, it's the physicia~is job, likc its ilnybody's job who needs to respect autononly, to say to a patient. 'What d o MU want?"; the patient says "I want A. B, C," or "1 don't want A. R, and C." and then ir's iusr the physician's job nb implemenr thar, l'har is a possible i~irerpretation of the law and way of procc-cding.

1 find that interprctatioli of the law, howev- cr, to bc quite unsatisfi~ctor): It is not only pcr- missible, but imporrant- I would wen say cs- sential-that a somewhat different step be taken by a physician (or anyone dealing with a patient). "What do you wanr?" Dax says, *I don't wanr rrc~rment." At that point 1 think i t is

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not only permissible but imperative that whoever hears that respond not with "OK, great. let's go ahead." but instead with. "Well, why exactly do you want that? Why have you come co that conclusion? I want to explore that with you." Now imagine the next step. Dax says, "None of your business." I think it is then both permissible and essential for the doctor to say, "No, no. it is my business, and not because I'm a doctor but because I am another human being who is necessarily involved in your life. We define one anoth- er in important kinds of ways, and while, of course, I cant define you, we have to negotiate together what our shared meanings are about, what it is that you want me to d o or not to do." It is correct not only for me to say, "Why do you want to d o that?" but also permissible for me to argue with you if I disagree, and to argue strenuously with you on a variety of grounds.

Now come the end of the day, yes, it's your life, it's not my life. Bur the question is, When havc we reached the end of the day? When may we terminate this conversation so that I believe that the choice that you're making is as considerate a choice as I think it is morally obligatory for you co make? I know that this can become a kind of trick, and it shouldn't be that; this is only the first step in a conversation.

Why do I think it's not just important but impera- tive that anybody hearing such a request on D& part explore it with h i n ~ and even quarrel with him? I think we define one another for one another. We arc not Lo- lated creatures, popped into this world, who chart our- selves only by what's in our head. We ;ire intensely so- cial creatures. Dax himself has become more than just an individual, he has become a symbol and indepen- dent force that shapes our way of thinking about our- selves when we imagine ourselves to be patients. We are mutually shapcd by our expectation in lots of ways.

There is one way I want to particularize that in Dax's case. All of us. as members of a society, have at- tirudcs toward p-ople with disabilities. Those of us who yc able-bodied or, as they say correctly among disability advocates, those of us who are temporarily able-bodied, ohen spend an enormous amount of en- ergy denying the t'act that our able-bodied scatus is, in fact, temporary. It is for many, many of us an unat- tractive, if not to say frightening, possibility to think of ourselves as significantly disabled. ,Many people in this society, for lots of different reasons, have sterco- typical views of disabled people and what their possi- bilities are. You correct me if I misstep here, Dax, but just on the face o i t h ~ matter, it seems to me that until your accident you were a member of the able-bodied

community, and a very able-bodied member at that, for whom your physical prowess was a matter of great importancc and pride to you. Suddenly and deeply beyond your control, in a way chat can happen fright- eningly to any of us, you found yourself pushed over this divide between the able-bodied and the not-able- bodied. But you inevitably brought with you ani- tudcs that were shaped at a time when you were com- fortably, happily, proudly a member of the ablc-bod- ied community.

Now it seems to me that having been pushed over that divide in physical terms. there still was a question, at least, about your attitudinal concerns, your attitudi- nal shift.

Let me read one passage from this initial conversa- tion that Dax had with Dr. White.' Dr. White said to Dax, "From rhe very beginning, according to what you've told me, and what's been written in your hospi- tal record, you had very strong feelings that you didn't want the donors to go on with your treatment, that you wanted them to leave you alone and not attempt to sustain your life. How do you feel about that at this point?" Dax said in response, "At this point 1 feel much the same way. If I felt that I could be rehabili- tated to where I could walk and d o other things nor- mally. I might havc a d i f f e ~ n t feeling about it. I don't know. But being blind itself is one big factor that in- fluences my thinking on the matter. I know that there's no way that I want to go on as a blind and a cripple."

Now human communication is a chancy and somewhat crude thing. I only havc your words. Dr. White only had Dax's words. Reading those words and putting myself imaginatively in the shoes of your physician, or your lawyer asked to represent you, I have a whole series of questions. How realistic was your perception at that point, just a few months afier your accident? How realistic was it of the full range of capacirirs that could be held out to you, even if you were permanently blind, and even if you were perma- nently unable to walk (which it curis out, of course, you were not)? How much contact had you had with people with significant disabilities of these sorts? How much were you devaluing your own capacity, thinking that in fact you would be able to d o nothing more –

than your mother's observation in the subsequent videotape interview. She said that you said at one point, "You know, all I'm going to be able do is to sit on a street corner and sell pencils." Well, of course we see today that you are very active and don't sell pencils. But this is a very common fear of able-bodied people

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who havc h;~d no substantial contact with people with disabilities.

So I wo111d ask myself first of d l , how realistic is someone like Dax's sense of the real possibilities open for him? But then second of all, how can I as a helper, someone who wants to be useful and helpful to him, communicate in a way that is fully undersAdablc and believable what the d range of opuow are to him, disabled. that he, formerly able-bodied and now still able-bodied in his image of himself, is not able to see. What do you do? There are niany possibilities. You bring people to talk, you discuss, you challenge. All this takes time. It's not something that you can just say to Dax, "Well, how realistic are you? Let's havc a brief discussion." In the kind of immensely difficult, im- mensely traumatic situation in which he found him- self, in-the midst of his treatment and with the physi- cal pain that he was feeling, and with the psychologi- cal pain of his losses including the loss of his father in the same accident, this is not a conversation that can take place in ten minutes or one day. Over how much timeand with what kind ofconstdnts?

Dax Cowart: Now 1 know how it feels to be killed with kindness. It makes it more difFicult to take the opposing position, but being the good lawyer that I am I will d o my best (audience laughter).

The right to control your own body is a right you're born with, not something that you have to ask anyone else for, not the government, not your treating physi- cian, not your next-of-kin. No one has the right to amputate your arms or your legs without your con- sent. No one has the right to remove your internal or- gans without your consent. No one has the right to force other kinds of medical treatment upon you with- out your consent. There is no legitimate law, there is no legitimate authority, there is no legitimate power anywhere on the face of this earth that can rake the right away from a mentally competent human being and give it to a state, to a federal government, or to any other person.

A number of quotations constitute a brief overvicw of what others have said throughout history and also give insight into my own feelings. In A Connecncut Yalzkee in fing Arthur: Court, the lading character and one of his companions come across a whole Fami- ly which ha almost died of smallpox. The mother ap- pears to be the only onc still alive. Later on they dis- cover she has a fifteen- ear-old daughter up in a sleep- ing loft who is in a near-comatose state and dmost dead. So t h ~ y rushcd the young girl down and began

administering aid to her. 1'11 pick up the quotation there. "I snatched Iny liquor flask from my knapsack, bur the woman forbade me and said: 'No, she does not suffer, it is better so. [t might bring her back to life. None that be so good and kind as ye are would do her that cruel hurt. Thou go on thy way. and be mercihl friends that will not hinder.'"

I was asking my own physicians to be mcrcihl friends who go on their way and do not hinder. Rut they would not listen. In the first part of this century Justice Louis Brandeis wrorc in one of his Supreme Court opinions: "The makers of our Constitution sought to protect .hericans, and their beliefs, their thoughts, their emotions, and their sensations. They conferred as againsr the government the right to be left alone, the most comprehe~~sive of rights and the right most valued by civilized man."

Warren Burger, who later became chief justice, re- ferred to Justice Brandcis: "Nothing suggests that Justice Rrandcis thought an individual possessed these rights only as to sensible beliefs, valid thoughts, r a – sonable emotions or well-founded sensations. I suggest that he intended to include a great many foolish, un- reasonable and even absurd ideas that do not conform. such as refbing medical treatment even at great risk."

Justice Burger did not want to encourage foolish, unreasonable, or absurd conduct, but he did recognize thc importance that the individual has in making his or her own decision. He understood that what somc of us might think of as foolish, unreasonable, or absurd can also be something that is very precious and dear to someone else.

.The English poet John Keats, alrnost 200 years ago, wrote simply, "Until we are sick. we understand nor." . ~

?'hat is so trur-until we are the ones who are feeling the pain, until we are the ones who are on the sick bed, we cannot fillly appreciate what the other person is going through. And cvcn having been rhere myself. today I cannot Fully appreciate what someone who has . .

been badly burned is going through on the burn ward. Our mind mercifully blocks out much of that pain.

When I was in the second grade, a popular joke concerned a mother who severely reprimanded her young son for conling home late from school. He said, "Mom, now that I'm a Boy Scout. I stopped to d o my p o d deed for the day and helped this little old granny lady cross the street." She said. "Young man. it sure docsn't take an hour to help one little old granny lady cross the street." He said, "Well, it sure did this one, 'cause she didn't want to go." 1 was like that lirtle old granny lady; I didn't wanr ro go. And even roday there

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are many patients who arc being forced to endure things that they dr) not wish to endure, while being taken laces that t h y don't even want to go.

John Stuart Mill, the English philosopher, in his essay On Lib- came down on the side of h e right to self-determination by dividing acts into those that are self-regarding and those that are other-regarding in nature. Mill concluded that when the act is sclf- regarding in nature, the individual should be left to make his or her own decisions. That is precisely my view. In a medical context, I am saying that before a physician is aUowcd to pick up a saw and saw off a patient's fingas or pick up a scalpel and cut out a pa- tient's eyes, we must make sure chat thc physician has first obtained that patient's informed conscnt. 1 always like to stick the word "voluntary" in there-informed and uoluntnry consent-because consent that is ob- tained through coercion or by telling half-nuths or withholding the full measure of risk and benefit is not truly consent. Medical providers need to understand that patients do not lose their constitutional righcs simply because thcy find thcmsclves behind a hospital wall. They have rhc same constitutional rights that the rest of us haw, that we expect and enjoy outside hospital walls.

Fortunately today we have many protections that we did not have when I was in the hospital in 1973 and 1974. We have legally enforceable advance dircc- tives such as durable power of attorney and other health care proxies. Studies, though, have shown that –

even when these ~dvance directives are part of the pa- tient's hospid reards, over half the rime they are ig- nored by the paticnr's physician.

When I was in the hospital there were many rca- sons I wanted to retlse treatment, but one was over- riding-the pain. The pain was so excruciating, it was so fir beyond any pain that I ever knew was possible, that 1 simply could not endure it. 1 was very naive. 1 had always thought in that day and age, 1973, chat a doctor would not let his OF her patient undergo that kind of pain; thev would be given whatever was need- ed to control it. 'Then I found out that was not true. T found out later that much more could have been done tor my pain.

There were other important issues, too. One, rhough it was a distant second, was what Dr. Burt mentioned, my quality of life. I jusr did not feel that living my life blind, disfigured, with my fingers am- putated and at that time not even able to walk, would be worthwhile. With that quaiity of life it did not seem that I would ever want to live. I have freely ad-

mitted for many years now that I was I ) . I 1 ..I,.I,I

wrong about that. 1 % ) 1 . 1 : I want ro clardy this, though.

Freedom, true freedom, not only gives us the right to make the correct choices; it also has to give us rhc right sometima to make the wrong choic- es. In my case, however, it was a moot point wherher I was wrong as far as my qualiry of life went, because that was a secondary issue. The immediate issue, the urgent issue. was that my pain was not being taken care of'. That was why I wanted to die.

Tociay I'm happy; in Fact I even feel that I'm happi- er than most people. I'm more active physically than I thought I cver would be. I've cakcn karate for a coupIe of years, I've climbed a 50-foot utility pole with the as- sistance of a belay line on the ropes course. I do other mental things, like write poetry and practice law. That is not to say though. that the doctors were right. To say that woldd reflect a mentalicy that says, all's well that ends well, or rhc ends justi5 the means-what- ever means neccssdry ro achieve the results are okay to use. Thar totally ignores the pain that I had to go

H4ST1NGS CENTER REPORT 17

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"When :s the end of

the dav? Is the end

of the day at the

end of one day. at

thr end of one

week, or at the

end of one year?

For nte. one hour

was an eternity."

"The time that I was

asking for was time

to address your

problent in the best

wav a doctor is

trained to do. If you

instst now that

you're r~ot going to

give me that time.

it frustrates what I

know I can do as a

caretaker. Look, a

discussion needs to

take place; that's

what I want. rather

than people talking

as it they are in

isolation booths."

–Kohcrr Rurr

rhrough. I chcck myself 011 this very otien. .cvcral rirnes a year, since I d o s p e A so much. I ask if rhe same rhing wcrr ro happen today under identical cir- cumstances, would I $rill warlc the Freedom? L o w i n g what 1 know now, would I still want che frcrdom ro r c f ~ ~ s c treatnient imd die? And rhc answer is always yes. a resoundiilg 1.e.s. I f 1 rhink ahour having ro go rhroi~gh char kind of pain again, 1 know rh.lr it's 11ot something I would wanr. Anorhcr individ- ual rnay well make a [email protected] decision. 'rhar's che beauty of freedom; char's his or her choice r o d o so.

Burt: You said ; ~ r the crid of your reniarks r h a ~ if had ro, if i t happcned all over again ro you, yclu woilld nonethclcss conic ro the same conclusion. If in- stead of this happening t o you. imagine tor :I minucc that rhcre would be somebody in exactly the smie sicuacio~i rhat YI ivcre in, bur chat roday you were called in ro ralk with this person. This prrson.had also said ro his o r her physicians. "1 don'c walic rt l be rreaccd. Stop I I I ) ~ . " Whar would yo11 say co that person?

Cowart: I would say to rhat pcrson, iusr its )mu suggested earlier, "What are vour conccrns?" I d o nor urgc, when a physician goes co a pacienc's hcdsidc and rhe pacienr s a y , "1)~. 1 don'r wanr to be rrt-aced, leave nie alone." that the physician sly, "lr's your decision" and walk auay. T h e physician has a duty co inform the patienr. ;LS well as he or she can. what in all honesy can be done and rhen solicit thc parienc's ct)ncerns. I'nl nor calking about painting some rosy scenario rliar is rc.dly nor .uzcur;lre. So ro Jnswcr your specific qucstion. were I callrd to rhac patient's bedside, I wollld van[ to ask why he or she wanc- ed co refuse rrracnlcnt. 1 vould expccr rhsr one o f the answers might be che pain. I would then say, "If that were addrcsxd. would thar change t h i n g for you?" They may say yes, and rhcy rnay say no. I would try co give that person rhc bcncfic of niy ow11 cxprricnc:es-riot iuhr rhr positive poinrs, bur che ncga- rive ones, because ir took me seven yrars following the explosion before I even began ro gec on my fcer again and life b m l n e reall) worrli living. Huc I would rry to reaflrm the person. Ict him or her know whar I rhoughr was possible. whar I choirght c o d d help, b u ~ 1 would nor skirr the problems. O n e of the problems vr have today, for ex~mple . is char once parienrs arc out of che mul- timillion-dollar hospital hciliries and away from all rhe nurses and doctors rherc, rhey don'r ofren liavc good support. The.)- h a w understaffed and undcr- funded government agencies c o rely on in nii~st c.ibes, and ofren they fall far shorc o f what they should hc.

Burt: Thar's intercsring. 1 cont in i~e t o 11e pu/:~lcd .1bo11r whether we signifi- canrly disagrec. I cornpletcly buy your proposirion thar rherc is a right herc, a righc of autonomous choice. -['lie only point rhac 1 keep pushing is your old qucscion of hov rhar ili iniplenlented. k t nic. if !ou will, try ro ~ u s h you a bit more jusr on this point. To mc i~ is chc crilcial qucstion. This imaginary pacienr says to !.ou rhat fir,[ of J I I thcrc's a pain prohlcm and it's nor being ad- dressed. I rake i r that givcn whar you now know about the possibiliries of pain control, you would rhen crarc rnovi~ig around and see ro ic thar such [rear- mcnt would bc available–rhe kind char ar thc tinic you were in the hospital wasn't made available to you. Am I righc?

Cowart: Yes.

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Burtr So you would fight for [hem. %'hat, though. if they said to you, '1 ~on't fight for me. Go away. My Life isn't worth living. I don't care what the possibiiry of getting on top of rhis pain is, just go away." m a t would you say then?

Cowan: At some point you have to say, "Okay, it's your decision.''

Bun: Yes, at some point, but that day? The next week? If not right away. ;Ire you comforrable i r l arguing with them?

Cowart: I would feel comfortable in confronting them. 1 would not say argue, but I would discuss it with them, even ct~nfront thcm.

Burt: What do p i 1 mean by confront?

C o w 'Take an opposing position, discuss it, and have a lively debate about it. I have no problem with that.

Burt: I have another question. The uhservation that you just made. that it cook you seven years ro get to the point where l i fe seemed hlly worthwhile is a very powerful one. Would you say to our imaginary pa- tient, "You know, the seven years time, it was hard time. Looked at from the ocher side, it now feels to me worth it, and it might feel like that to you, too"?

Cowan: That would be the honest way to do it.

Burt: What if they said. "No, you're different from me, it just can't bt.. I can't do it, I can't do it"? Is there anything you would do then?

Cowart: This goes back to your question, When is the end of the dav? Is the end of the day at the end of one day, at the end of one week, or at the end of one year? To answer trurhh~lly, I don't think I can say when it is without knowing more about the circumstances. For me, one hour was an eternity with the pain I was going rhrough. Certainly no long^^ than one day under those circumstances. There may be times when we would want tc? extend rhar to a week or maybe a month, dependi~~g on how severe the pain was. But the problem I see in doing chat is that I doni believe our health care providers would be honest about let- ting go of a paticnr earlier than whatever we set up ;tc

the maximum time. Our health care providers have been entrenchcci in paternalism since probably the

beginning of the profession. and until we break out of the pater~~alist~c mode, I can't see our physicians al- lowing patients to exercise their free choice unless they're Icgdly bound to.

Audience Question: Mr. Bun, when is it okay for a doctor to say to a patient who rcfilsa lifesaving trcat- ment, "I agrec with you"? The patient's in a lot of pain. shc's suffering, and has a chronic illness. When is it okay to say. "All right, you can call an end to it?" When is rhc end of the day? When is it appropriate to acknowledge that to the patient?

Burt: I agree that there must be an end of the day. Otherwise one is disrespectful of the person who is saying 'No. no, no-cnough." I also agm: that you should make it c l e~r to patients from the beginning that ultimately its their choice. But then I would say ir's appropriate to say. "Give me time. Give me an op- portunity, at least." Now once you say that, you're on the linc and you must continue ro spend timc with this person-respectful time, extrnsivc time. That it- self is a very risky thing for you to do. It's a very mn- siderable commitment, and you can't go into it lightly. You can't go into it lightly as a friend, and you can't go into it lightly as a professional. So you've got KO be prc- pared to follow through by saying, in effect, "l'm here with you, I'm going to stay with you." But dso, "I would hope and expect that as we struggle together it will hecome clearer to the both of us when chat end of the day is. But at least right now it's not clear to me chat we're thcre." Then see what the person says. This is not s~ying something and then vanishing for two weeks, hecause you're going on vacation somewhere or have other things to do. The commitment is enor- mously burdensome for a caretaker to take on in these situations. But that to me is the heart of caretaking. Is that an answer?

Same Questioner: Not really. Dax said earlier, he had torturous pain. Arc you sa+g that rhis patient should go through such suffering for this delayed, ex- tended dialogue that you want?

Burt: Well, look, when 1 say "Give me, time," I would hope, particdarly on these pain issues, that one would $so take somc action. The provision of adequate pain control in rhis culture today is a disgrace, but it shouldn't be. Medical technology that is extraordinar- ily responsive in lots of ways is available. It's a great puzzle in a way-part of the scnsc of isolation and dis-

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regard for patien-that we are doing so little to irn- plemenr what we know abour addressing issues of pain. Lotr of pain, though. is complicated to deal with. So when I ask for time. I don't mean, give me timc be- cause I'm going down to the cqfeteria since I'm hun- gry. What I mean is, give me time to get the resources that I know exist that can address this in some way If it turns out that there aren't those resources, or I really tried to get thcm arid they did not work, then 1 come back to the patient and say, "Okay, 1 failed on that score; now we have to go from here." At that poit~t, it does make sense for me to say. "Okay, this is intolera- ble for you. That's it, that's enough." So the time that J was asking for, was timc to address your problem in the best way a doctor is trained to do. To the patient who said. "What d o you mean, give you time?* I'd say, 6%. Give me rime to do my job. I acknowledge that wc're not meeting your needs right now, but J think we can, though it will take some time for me to do that." If you insist now that you're not going to give me that time, it frustrates what 1 know I can do as a wrctaker. Look, a discussion needs to take placc: that's what I want, rather than people talking as if they are in isola- tion booths.

Cowart: A physician has to acablish rapport with his or her patient. treat that patient as a human being, la the patient know that he or shr really cares. 1 don't know whether it's taught or whether it's just pickcd up or