Yale Law School
Yale Law School Legal Scholarship Repository
Faculty Scholarship Series
Yale Law School Faculty Scholarship
1-1-1998
Confronting Death: Who Chooses? Who
Controls? A Dialogue between Dax Cowart and
Robert Burt
Robert A. Burt
Yale Law School
Follow this and additional works at: http://digitalcommons.law.yale.edu/fss_papers
Part of the Medical Jurisprudence Commons
Recommended Citation
Burt, Robert A., "Confronting Death: Who Chooses? Who Controls? A Dialogue between Dax Cowart and Robert Burt" (1998).
Faculty Scholarship Series. Paper 706.
http://digitalcommons.law.yale.edu/fss_papers/706
This Article is brought to you for free and open access by the Yale Law School Faculty Scholarship at Yale Law School Legal Scholarship Repository. It
has been accepted for inclusion in Faculty Scholarship Series by an authorized administrator of Yale Law School Legal Scholarship Repository. For
more information, please contact [email protected].
Confronting
Death
Who
Chooses, Who
Controls?
A Dialogue between Dax Cowart and Robert Burt
n 21 November 1996, Dax
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. Dax Cowart 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'slife
and very deeply burned more than two-thirds
of his own body. He was left blind and without
the use 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 the famous "Please Let Me Die" video,
and in 1984 a second video, "Dax's Case." In
1986 Dax Cowart received a law degree from
TexasTech University.
Burt and Cowart have correspondedover the
course of several years on the subject of Dax's
case and related issues. They met for the first
time during their trip to Tacoma, Washington
for the Koller Memorial Lecture.The following
is an edited transcriptof their public remarks.
"ConfrontingDeath:Who Chooses,Who Controls?A
DialoguebetweenDax Cowartand RobertBurt,"Hastings
CenterReport28, no. 1 (1998): 14-24.
14
HASTINGS CENTER REPORT
Robert Burt: Let me start at a place where I
think we agree. Before 1974, the dominant attitude of physicians toward patients was by and
large intensely disrespectfulof patients' autonomy. The basic posture was paternalistic.
Physiciansknew what was best for patients, and
the patient'sjob was just to go along. Dax himself has been a critically important actor and
symbol in identifying the wrongdoing in that
attitude, and raising into high social visibility
the proposition that autonomy is a vitally important value; patients are the central actors
here and physicians must attend to them in a
respectful and careful way. On that point we
agree.
The place at which I get troubled or confused is what exactly follows if we embrace this
important norm of autonomy. Startwith a simple version of two alternatives,perhaps extreme
alternatives,to try and sharpen what the issues
are. One version of autonomy says:well, it's the
physician'sjob, like it's anybody'sjob who needs
to respect autonomy, to say to a patient, "What
do you want?";the patient says "I want A, B,
C," or "I don't want A, B, and C," and then it's
just the physician'sjob to implement that. That
is a possible interpretationof the law and way
of proceeding.
I find that interpretationof the law, however, to be quite unsatisfactory.It is not only permissible, but important- I would even say essential-that a somewhat different step be
taken by a physician (or anyone dealing with a
patient). "What do you want?" Dax says, "I
don'twant treatment."At that point I think it is
January-February 1998
not only permissiblebut imperativethat whoever
hears that respond not with "OK, great, let's go
ahead,"but insteadwith, "Well,why exactlydo you
want that?Why haveyou come to that conclusion?I
wantto explorethatwith you."Now imaginethe next
step. Dax says,"None of your business."I think it is
then both permissibleand essentialfor the doctor to
say,"No, no, it is my business,and not becauseI'm a
doctorbut becauseI am anotherhumanbeingwho is
necessarilyinvolvedin yourlife.We defineone another in importantkinds of ways,and while, of course,I
can'tdefine you, we have to negotiatetogetherwhat
our sharedmeaningsare about, what it is that you
want me to do or not to do."It is correctnot only for
me to say, "Why do you want to do that?"but also
permissiblefor me to arguewith you if I disagree,and
to arguestrenuouslywith you on a varietyof grounds.
Now come the end of the day, yes, it's your life,
it's not my life. But the questionis, When have we
reachedthe end of the day?When may we terminate
this conversationso that I believethat the choice that
you'remakingis as consideratea choiceas I think it is
morallyobligatoryfor you to make?I know that this
can become a kind of trick,and it shouldn'tbe that;
this is only the firststep in a conversation.
Why do I think it'snot just importantbut imperative that anybodyhearingsucha requeston Dax'spart
exploreit with him and evenquarrelwith him?I think
we defineone anotherfor one another.We arenot isolatedcreatures,poppedinto thisworld,who chartourselvesonly by what'sin our head.We areintenselysocial creatures.Dax himselfhas becomemorethanjust
an individual,he has becomea symboland independent forcethatshapesour way of thinkingaboutourselveswhen we imagineourselvesto be patients.We
aremutuallyshapedby ourexpectationin lots of ways.
There is one way I want to particularizethat in
Dax'scase.All of us, as membersof a society,haveattitudes towardpeople with disabilities.Those of us
who are able-bodiedor, as they say correctlyamong
disabilityadvocates,those of us who are temporarily
able-bodied,often spendan enormousamountof energydenyingthe fact thatour able-bodiedstatusis, in
fact, temporary.It is for many,many of us an unattractive,if not to say frightening,possibilityto think
of ourselvesas significantlydisabled.Manypeople in
this society,for lots of differentreasons,have stereotypicalviewsof disabledpeopleand whattheirpossibilitiesare.Youcorrectme if I misstephere,Dax, but
just on the faceof the matter,it seemsto me that until
your accidentyou were a memberof the able-bodied
1998
January-February
community,and a very able-bodiedmemberat that,
for whom yourphysicalprowesswasa matterof great
importanceand pride to you. Suddenlyand deeply
beyondyourcontrol,in a way thatcanhappenfrighteninglyto any of us, you found yourselfpushedover
this dividebetweenthe able-bodiedand the not-ablebodied. But you inevitablybroughtwith you attitudesthatwereshapedat a time when you werecomfortably,happily,proudlya memberof the able-bodied community.
Now it seemsto me that havingbeen pushedover
thatdividein physicalterms,therestillwasa question,
at least,aboutyourattitudinalconcerns,yourattitudinal shift.
Let me readone passagefromthis initialconversation thatDax hadwith Dr.White.' Dr.White saidto
Dax, "Fromthe very beginning,accordingto what
you'vetold me, andwhat'sbeenwrittenin yourhospital record,you had verystrongfeelingsthatyou didn't
want the doctorsto go on with your treatment,that
you wantedthem to leaveyou aloneand not attempt
to sustainyourlife. How do you feelaboutthatat this
point?"Dax said in response,"At this point I feel
much the sameway.If I felt that I could be rehabilitated to whereI could walkand do otherthingsnormally,I mighthavea differentfeelingaboutit. I don't
know. But being blind itselfis one big factorthat influences my thinking on the matter. I know that
there'sno way that I want to go on as a blind and a
cripple."
Now human communication is a chancy and
somewhatcrude thing. I only have your words. Dr.
White only hadDax'swords.Readingthosewordsand
putting myself imaginativelyin the shoes of your
physician,or your lawyerasked to representyou, I
have a whole series of questions.How realisticwas
your perceptionat that point, just a few monthsafter
your accident?How realisticwas it of the full rangeof
capacitiesthat could be held out to you, even if you
werepermanentlyblind,and even if you werepermanently unableto walk (whichit turnsout, of course,
you werenot)?How much contacthad you had with
peoplewith significantdisabilitiesof thesesorts?How
much wereyou devaluingyourown capacity,thinking
that in fact you would be able to do nothing more
than your mother'sobservationin the subsequent
videotape interview.She said that you said at one
point, "Youknow,all I'mgoing to be able do is to sit
on a streetcornerand sellpencils."Well,of coursewe
see todaythatyou areveryactiveanddon'tsellpencils.
But this is a very commonfearof able-bodiedpeople
HASTINGS CENTER REPORT
15
who havehad no substantialcontactwith peoplewith
disabilities.
So I would ask myselffirst of all, how realisticis
someonelike Dax'ssenseof the realpossibilitiesopen
for him?But then secondof all, how can I as a helper,
someonewho wants to be usefuland helpfulto him,
and
communicatein a waythatis fullyunderstandable
believablewhat the realrangeof options are to him,
disabled,that he, formerlyable-bodiedand now still
able-bodiedin his imageof himself,is not ableto see.
What do you do? There are many possibilities.You
bring people to talk, you discuss,you challenge.All
thistakestime. It'snot somethingthatyou canjustsay
to Dax, "Well,how realisticareyou?Let'shavea brief
discussion."In the kind of immenselydifficult,immenselytraumaticsituationin which he found himself, in the midst of his treatmentand with the physical pain that he was feeling,and with the psychological painof his lossesincludingthe loss of his fatherin
the sameaccident,this is not a conversationthat can
takeplacein ten minutesor one day.Overhow much
time andwith whatkind of constraints?
Dax Cowart:Now I know how it feels to be killed
with kindness.It makesit more difficultto take the
opposingposition, but being the good lawyerthat I
am I will do my best (audiencelaughter).
The rightto controlyourown bodyis a rightyou're
bornwith, not somethingthatyou haveto askanyone
else for,not the government,not your treatingphysician, not your next-of-kin.No one has the right to
amputateyour armsor your legs without your consent. No one has the rightto removeyour internalorgans without your consent.No one has the right to
forceotherkindsof medicaltreatmentupon you without your consent.There is no legitimatelaw, thereis
no legitimateauthority,there is no legitimatepower
anywhereon the face of this earththat can take the
rightawayfrom a mentallycompetenthuman being
andgiveit to a state,to a federalgovernment,or to any
otherperson.
A numberof quotationsconstitutea briefoverview
of what othershavesaid throughouthistoryand also
give insight into my own feelings.In A Connecticut
Yankeein KingArthursCourt,the leading character
and one of his companionscome acrossa whole family whichhas almostdied of smallpox.The motherappearsto be the only one still alive.Lateron they discovershe has a fifteen-year-old
daughterup in a sleepin
a
loft
who
is
near-comatose
state and almost
ing
the
dead.So they rushed young girl down and began
16
HASTINGS CENTER REPORT
administeringaid to her. I'll pick up the quotation
there."I snatchedmy liquorflaskfrom my knapsack,
but thewomanforbademe andsaid:'No, shedoesnot
suffer;it is betterso. It might bringher backto life.
None thatbe so good and kindasye arewoulddo her
that cruelhurt.Thou go on thy way,and be merciful
friendsthatwill not hinder."'
I was asking my own physiciansto be merciful
friendswho go on theirway and do not hinder.But
theywould not listen.In the firstpartof this century,
JusticeLouis Brandeiswrote in one of his Supreme
Court opinions: "The makersof our Constitution
sought to protectAmericans,and their beliefs,their
thoughts,their emotions,and their sensations.They
conferredas againstthe governmentthe rightto be left
of rightsand the right
alone,the most comprehensive
mostvaluedby civilizedman."
WarrenBurger,who laterbecamechief justice,referred to Justice Brandeis:"Nothing suggests that
JusticeBrandeisthoughtan individualpossessedthese
rightsonly as to sensiblebeliefs,valid thoughts,reasonableemotionsor well-foundedsensations.I suggest
that he intendedto includea greatmany foolish,unandevenabsurdideasthatdo not conform,
reasonable
suchas refusingmedicaltreatmenteven at greatrisk."
JusticeBurgerdid not want to encouragefoolish,
or absurdconduct,but he did recognize
unreasonable,
the importancethat the individualhas in makinghis
or herown decision.He understoodthatwhatsome of
or absurd
us might think of as foolish, unreasonable,
canalsobe somethingthatis verypreciousanddearto
someone else.
The EnglishpoetJohnKeats,almost200 yearsago,
wrotesimply,"Untilwe aresick,we understandnot."
That is so true-until we arethe ones who arefeeling
the pain,untilwe arethe oneswho areon thesickbed,
we cannot fully appreciatewhat the other person is
going through.And even having been theremyself,
whatsomeonewho has
todayI cannotfullyappreciate
beenbadlyburnedis going throughon the burnward.
Our mind mercifullyblocksout much of thatpain.
When I was in the second grade, a popularjoke
concerneda motherwho severelyreprimandedher
youngson for cominghome latefromschool.He said,
"Mom,now thatI'ma Boy Scout,I stoppedto do my
good deedfor the dayand helpedthis littleold granny
lady cross the street."She said, "Youngman, it sure
doesn'ttakean hourto help one little old grannylady
crossthe street."He said, "Well,it sure did this one,
'causeshe didn'twant to go."I was like thatlittle old
grannylady;I didn'twant to go. And even todaythere
January-February 1998
are many patients who are being forced to endure
things that they do not wish to endure,while being
takenplacesthat they don'tevenwant to go.
John StuartMill, the Englishphilosopher,in his
essayOn Liberty,came down on the side of the right
to self-determination
by dividingacts into those that
are self-regardingand those that are other-regarding
in nature.Mill concluded that when the act is selfregardingin nature,the individualshould be left to
make his or her own decisions.That is preciselymy
view. In a medicalcontext, I am sayingthat beforea
physicianis allowedto pick up a saw and saw off a
patient'sfingersor pick up a scalpeland cut out a patient'seyes,we must makesurethat the physicianhas
firstobtainedthat patient'sinformedconsent.I always
in there-informed
like to stickthe word "voluntary"
and voluntaryconsent-because consent that is obtained through coercion or by telling half-truthsor
withholdingthe full measureof riskand benefitis not
truly consent. Medicalprovidersneed to understand
that patients do not lose their constitutionalrights
simplybecausethey find themselvesbehinda hospital
wall. They have the same constitutionalrights that
the rest of us have, that we expect and enjoy outside
hospitalwalls.
Fortunatelytoday we have many protectionsthat
we did not havewhen I was in the hospitalin 1973
and 1974. We havelegallyenforceableadvancedirectives such as durable power of attorney and other
healthcareproxies.Studies,though, haveshown that
evenwhen theseadvancedirectivesarepartof the patient'shospitalrecords,overhalf the time they areignoredby the patient'sphysician.
When I was in the hospitaltherewere many reasons I wanted to refusetreatment,but one was overriding-the pain.The painwas so excruciating,it was
so far beyondany pain that I everknew was possible,
that I simplycould not endureit. I was very naive.I
had alwaysthoughtin that day and age, 1973, that a
doctorwould not let his or her patientundergothat
kind of pain;theywould be givenwhateverwas needed to controlit. Then I found out thatwas not true.I
foundout laterthatmuch morecouldhavebeendone
for my pain.
There were other important issues, too. One,
though it was a distant second, was what Dr. Burt
mentioned,my qualityof life. I just did not feel that
living my life blind, disfigured,with my fingersamputatedand at that time not even ableto walk,would
be worthwhile.With that quality of life it did not
seem that I would everwant to live. I have freelyadJanuary-February 1998
mitted for many years now that I was
Dax Cowart
in 1972.
wrong about that.
I want to clarify this, though.
Freedom, true freedom, not only gives
us the right to make the correct choices; it also has to
give us the right sometimes to make the wrong choices. In my case, however, it was a moot point whether I
was wrong as far as my quality 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.
Today I'm happy; in fact I even feel that I'm happier than most people. I'm more active physically than I
thought I ever would be. I've taken karate for a couple
of years, I've climbed a 50-foot utility pole with the assistance 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 would reflect a mentality that says, all's well
that ends well, or the ends justify the means-whatever means necessary to achieve the results are okay
to use. That totally ignores the pain that I had to go
HASTINGS CENTER REPORT
17
"When is the end of
the day? Is the end
of the day at the
end of one day, at
through.I checkmyselfon thisveryoften,severaltimesa year,sinceI do speak
so much. I ask if the same thing were to happentoday underidenticalcircumstances,would I still want the freedom?Knowingwhat I know now,
would I still want the freedomto refusetreatmentand die?And the answeris
alwaysyes, a resoundingyes. If I thinkabouthavingto go throughthat kind
of pain again,I know that it'snot somethingI wouldwant.Anotherindividual maywell makea differentdecision.That'sthe beautyof freedom;that'shis
or her choiceto do so.
the end of one
week, or at the
end of one year?
For me, one hour
was an eternity."
Burt:Yousaidat the end of yourremarksthat if you had to, if it happenedall
overagainto you, you would nonethelesscome to the sameconclusion.If instead of this happeningto you, imaginefor a minute that therewould be
somebodyin exactlythe samesituationthat you werein, but that todayyou
werecalledin to talkwith this person.This personhad also saidto his or her
physicians,"Idon'twantto be treated.Stopnow."Whatwouldyou sayto that
person?
-Dax Cowar
"The time that I was
asking for was time
to address your
problem in the best
way a doctor is
trained to do. If you
insist now that
you're not 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 if they are in
isolation booths."
-Robert Burt
Cowart:I would say to that person,just as you suggestedearlier,"Whatare
I do not urge,when a physiciangoesto a patient'sbedsideand
yourconcerns?"
the patientsays,"Doc, I don'twant to be treated,leaveme alone,"that the
physiciansay,"It'syour decision"and walkaway.The physicianhasa duty to
informthe patient,as well as he or she can, what in all honestycan be done
and then solicit the patient'sconcerns.I'm not talkingabout paintingsome
rosyscenariothat is reallynot accurate.So to answeryour specificquestion,
wereI calledto thatpatient'sbedside,I wouldwantto askwhy he or shewanted to refusetreatment.I would expectthat one of the answersmight be the
pain. I would then say,"Ifthatwereaddressed,would that changethingsfor
you?"They maysayyes, and they maysayno. I wouldtry to givethatperson
the benefitof my own experiences-notjustthe positivepoints,but the negative ones, becauseit took me sevenyearsfollowingthe explosionbeforeI even
beganto get on my feetagainand life becamereallyworthliving.ButI would
try to reaffirmthe person,let him or her know what I thoughtwas possible,
what I thoughtcould help, but I would not skirtthe problems.One of the
problemswe havetoday,for example,is thatonce patientsareout of the multimillion-dollarhospitalfacilitiesand awayfrom all the nursesand doctors
and underthere,theydon'toften havegood support.They haveunderstaffed
fundedgovernmentagenciesto relyon in most cases,and often they fall far
shortof whatthey shouldbe.
Burt:That'sinteresting.I continue to be puzzledabout whetherwe significantlydisagree.I completelybuy yourpropositionthat thereis a righthere,a
rightof autonomouschoice.The only point that I keep pushingis your old
questionof how that is implemented.Let me, if you will, try to push you a
bit morejust on this point. To me it is the crucialquestion.This imaginary
patientsaysto you thatfirstof all there'sa pain problemand it'snot being addressed.I takeit thatgivenwhatyou now knowaboutthe possibilitiesof pain
control,you would then startmovingaroundand see to it that such treatment would be available-the kind that at the time you were in the hospital
wasn'tmadeavailableto you. Am I right?
Cowart:Yes.
18
HASTINGS CENTER REPORT
1998
January-February
Burt:So you would fight for them. What, though,if
theysaidto you, "Don'tfightfor me. Go away.My life
isn'tworth living. I don'tcarewhat the possibilityof
getting on top of this pain is, just go away."What
would you say then?
Cowart:At some point you have to say, "Okay,it's
yourdecision."
Burt:Yes,at some point, but thatday?The nextweek?
If not rightaway,areyou comfortablein arguingwith
them?
Cowart: I would feel comfortable in confronting
them. I would not say argue,but I would discussit
with them, even confrontthem.
Burt:What do you meanby confront?
Cowart:Takean opposingposition,discussit, andhave
a livelydebateaboutit. I haveno problemwith that.
Burt: I have anotherquestion.The observationthat
you just made, that it took you sevenyearsto get to
the point wherelife seemedfullyworthwhileis a very
powerfulone. Would you say to our imaginarypatient, "Youknow, the seven yearstime, it was hard
time. Lookedat fromthe otherside,it now feelsto me
worth it, and it might feel like that to you, too"?
Cowart:That would be the honestway to do it.
Burt: What if they said, "No, you'redifferentfrom
me, it just can'tbe. I can'tdo it, I can'tdo it"?Is there
anythingyou would do then?
Cowart:This goes backto yourquestion,When is the
end of the day?Is the end of the dayat the end of one
day,at the end of one week,or at the end of one year?
To answertruthfully,I don'tthink I can saywhen it is
without knowingmore about the circumstances.For
me, one hour was an eternity,with the pain I was
going through. Certainly no longer than one day
Theremay be timeswhen
underthosecircumstances.
we would want to extend that to a week or maybea
month, dependingon how severethe pain was. But
the problemI see in doing that is that I don'tbelieve
our healthcareproviderswould be honestabout letting go of a patientearlierthanwhateverwe set up as
the maximumtime. Our health care providershave
been entrenchedin paternalismsince probablythe
1998
January-February
beginningof the profession,and untilwe breakout of
the paternalisticmode, I can'tsee our physiciansallowing patients to exercisetheir free choice unless
they'relegallybound to.
AudienceQuestion:Mr. Burt,when is it okay for a
doctorto say to a patientwho refuseslifesavingtreatment, "I agreewith you"?The patient'sin a lot of
pain,she'ssuffering,and hasa chronicillness.When is
it okay to say,"Allright,you can call an end to it?"
to
When is the end of the day?When is it appropriate
that
to
the
patient?
acknowledge
Burt: I agreethat there must be an end of the day.
Otherwiseone is disrespectfulof the person who is
saying"No, no, no-enough." I also agreethat you
should make it clearto patientsfrom the beginning
that ultimatelyit'stheirchoice.But then I would say
it's appropriateto say, "Give me time. Give me an opportunity, at least." Now once you say that, you'reon
the line and you must continue to spend time with
this person-respectful time, extensive time. That itself is a very risky thing for you to do. It's a very considerablecommitment, and you can'tgo into it lightly.
You can'tgo into it lightly as a friend, and you can'tgo
into it lightly as a professional.So you've got to be prepared to follow through by saying, in effect, "I'm here
with you, I'm going to stay with you." But also, "I
would hope and expect that as we struggle together it
will become clearerto the both of us when that end of
the day is. But at least right now it's not clear to me
that we're there."Then see what the person says. This
is not saying something and then vanishing for two
weeks, becauseyou'regoing on vacation somewhere or
have other things to do. The commitment is enormously burdensome for a caretakerto take on in these
situations. But that to me is the heart of caretaking.Is
that an answer?
Same Questioner: Not really.As Dax said earlier,he
had torturous pain. Are you saying that this patient
should go through such suffering for this delayed, extended dialogue that you want?
Burt: Well, look, when I say "Give me, time," I would
hope, particularlyon these pain issues, that one would
also take some action. The provision of adequate pain
control in this culture today is a disgrace, but it
shouldn't be. Medical technology that is extraordinarily responsive in lots of ways is available. It's a great
puzzle in a way-part of the sense of isolation and disHASTINGS CENTER REPORT 19
regardfor patients-that we aredoing so little to implement what we know about addressingissues of
pain.Lotsof pain,though,is complicatedto dealwith.
So when I askfor time, I don'tmean,give me time becauseI'm going down to the cafeteriasince I'm hungry.What I meanis, give me time to get the resources
that I know existthatcan addressthis in some way.If
it turnsout that therearen'tthoseresources,or I really
triedto get them and they did not work,then I come
back to the patient and say, "Okay,I failed on that
score;now we haveto go fromhere."At that point, it
does makesensefor me to say,"Okay,this is intolerable for you. That'sit, that'senough."So the time that
I was askingfor,was time to addressyour problemin
the best way a doctoris trainedto do. To the patient
who said,"Whatdo you mean,giveyou time?"I'dsay,
"Giveme time to do my job. I acknowledgethatwe're
not meetingyourneedsrightnow,but I thinkwe can,
though it will take some time for me to do that."If
you insist now that you'renot going to give me that
time, it frustrateswhat I know I can do as a caretaker.
Look, a discussionneeds to take place;that'swhat I
want,ratherthanpeopletalkingas if they arein isolation booths.
Cowart:A physicianhas to establishrapportwith his
or herpatient,treatthatpatientas a humanbeing,let
the patient know that he or she reallycares.I don't
knowwhetherit'staughtor whetherit'sjust pickedup
or by watchingotherphysicians,but I think thereis a
professionaldistance,a real displacement,by physiciansthat is counterproductive
for good medicaltreatment.I'llgiveyou an example.When I wasin the hospital, the directorof the burn ward wanted to do
surgeryon my fingers.He felt I could probablyget
someuseout of my hand,but I wouldn'tdo it, because
the surgeryI had had before on my hands was so
painful.
Therewas a medicalstudent,though,who was assigned to work with me. He'd come by every day.
We'dhavefriendly,heart-to-heart
talks,and I likedthe
a
lot.
He
wanted
me
to
have
guy
my handsoperated
on and askedme why I would not allowthe doctorto
do it. I explainedto him about the pain. He said,
"Wellif I guaranteedyou thatyou would be keptout
of pain, would you?"I told him I'dconsiderit, but I
just didn'tsee how he could guaranteethat, especially
since he was a medicalstudent.But he continuedto
talkwith me until finallyI agreedto talk to the director of the burnwardaboutit, who then camein and
assuredme that he would do everythinghe could to
20
HASTINGS CENTER REPORT
keepme out of pain.He would give me as muchpain
medicationas he possiblycould and not jeopardize
my life. It wasn't until then that I agreed to the
surgery,and he did keephis wordon the paincontrol.
That is more the model of what should take place.
But the physicianshould not havethe powerto force
upon the patienta long, ongoingdiscussionlike that
over an extendedperiod of time, whetherit be days
or weeks.
AudienceQuestion:Mr. Cowart,you havefocuseda
lot on the physiciansup to this point. How wereyou
treatedby yournurses?
Cowart:Overall,I was very impressedby theirgood
care.Nursestend to understand,to havea verycaring
side to them that I don'tsee nearly
and compassionate
as often in physicians.Sometimesyou canhavenurses
who are barracudas,
though, and a physicianwho is
and
very loving
compassionate.I don't know how
or how
muchof the generaldifferenceis gender-based,
much of it is in the training;I suspectit's some of
both. Above all, nursesare there with the patients;
they'rein the trenchesworkingwith the patients,seeing what the patient'sgoing throughon a minute-tominute, hour-to-hour basis. They seem to have a
much better understandingof and empathyfor the
patientthan I'veseen in mostphysicians.
AudienceQuestion:Mr. Burt,I'm an RN and a hospice nurse. I have two patientsright now; both of
them have recliners,both of them haveTV remotes,
both of them havemorphine,and both of them have
pain. In the last two weeks,one patientsaid, "I have
everythingI need.I havemy recliner,my remote,my
morphine,and I'm fine."The other patientsaid, "I
hatemy life.All I haveis thisstinkingreclinerandTV
and my morphine.This isn'ta life."Now in the last
week,one of thosepatientshas died becausehe made
a decision to stop all of his medicationexcept his
morphine,andhe died. I wasnot readyforhim to die,
but he was readyto die. If I had arguedwith him,
whose need would be met?It would not be his need,
wouldit?
Burt:I guessI wouldsaythatif you hadstoppedhim,
But this word"arguing,"
thatwould be inappropriate.
maybewe get hungup on it. Importuning,offeringto
explore,not just taking this patient'sstatementin a
way that I'm sureyou didn't-that is appropriateto
moveinto.
1998
January-February
SameQuestioner:I mean,we talkeda lot!
Burt: Good-that's right.The root of this is in the
of individualinteraction.It soundsto me,
particularity
evenin the minutein which I haveheardyou describe
this, thatyou reachedwhat I wouldagreeis the end of
the day.That is, the end of an involved,caring,committedrelationshipin which it wasveryclearthatyou
werenot going to walkaway.That'sthe most thatyou
can offer.You'vegot to offer that, and you did. And
hospicecaregenerallydoes. I see the forcesof disregard,of speedyresolution,of turningawayfrom patients,of beingaversiveto deathand dying,for example, as so stronggenerallyin the medicalprofession
thatby contrasthospiceis a wonderfulexception.
So, too, is the caregiverwho maylovinglychallenge
a patient'srequests.You ask, whose needs are such
caregiversmeeting?Do they do it only for their patients?Or do they do it for theirpatientsand themselves?There'sa mix in thesethings.Who can drawa
strictline and say, "Hey,I know that I'm just doing
this for you and not for me?"I would turn the question around. A patient is complainingand saying,
thatyou do is wrong.Yougiveme the re"Everything
clinerand I don'tlike it. You give me the morphine
and I don'tlike it. So let me out of here."If you say
"Right,"what and who would you be doing that for?
Manypeoplewhom I'vetalkedto involvingthe careof
"difficult"patients,when they are honestwith themselves,say it'sveryhardto makesurethatwhatthey're
doing is not for themselves but for the patients.
Sometimes,in hangingin there,it'sa mix-no, it'salwaysa mix. The goal is only that it shouldbe principallyfor the patientand only secondarilyforyou. But
that'snot an easygoal to get to either.Youget closest
to it by struggle,sweat,honesty,reflection.
Audience Question: Mr. Cowart,I'm trying to understandyour thinking.Youwerein the hospitaland
kept sayingyou wantedto die, and then you werereleased home without much care. You said it took
sevenyearsfor you to turn your life around,but you
did. You didn'tkill yourself.At what point did you
say,"Iwant to live"?
Cowart:I don'tknow whereor when that point was.
When I wasin the burnwardandwas told I wasgoing
to live regardlessof whetherI had that last skin graft
operationor not, I told myself,I'm just going to do
whateverI can to make the best of a bad situation.I
didn'treallylive up to that. Subsequently,
and within
January-February 1998
that seven-yearperiod, I tried to take my own life
twice-three times if you count the time I crawled
overthe hospitalbed railstryingto get to the window
to jump out of an eight-storywindow.But in 1980,
and all duringthe entiresevenyearsafterI was in the
hospital,I wasnot ableto sleepverywell at all. I'dstay
awakemost of the night and then could hardlystay
awakeduringthe day.I wastryingto go to law school,
too, and everytime I felt like I was gettingsomething
going, I couldn'tsleep then and I couldn'tfunction.I
felt just slammedrightdown to the groundagain.In
1980 Dr.Whitewasableto help me sleepbetter.Then
I reallysawmy life turnaround.
AudienceQuestion:Mr. Cowart,it seemsto me that
you are a perfectexampleof what now seems to be
successin spiteof any physicaldisability.Do you now
feelat all grateful,thinkingback?Areyou gladthatthe
doctorsfoughtyour requestto die?
Cowart:I do not feel gratefulto anyonefor fighting
my requestto die. What I do feel gratefulto them for
is that I believethey honestlyfelt theywere actingin
my best interest.But no, I'm not glad they forcibly
treatedme becausethe pain that I went throughwas
pure hell. We lose sight of how painfulpain can be.
Einsteinapparentlyonce talkedaboutcomparingsitting five minuteson a parkbench besidea beautiful
girl with sittingfive minuteson a hot plate and said,
"that'srelativity!"
Audience Question: In fighting for your right to
choose your fate, were you also fighting physically
againstthe carethat was forcedupon you?Wereyou
physicallytryingto refusetreatment?
Cowart:Oh yes!I would havedone anythingto keep
them awayfrom me. I used everythingI had at my
disposalto try to do that.
Same Questioner: Do you suppose that this fight
within you, this struggle,this energyyou wereputting
out, actuallymadeyou live?
Cowart:Yes. I think it was, ironically,counterproductive for what I wanted.There was a burn ward
nurse I laterlearnedof who left the hospitalbeforeI
got there. She would not take anythingoff her patients, no matter how badly they were burned and
what their expectation was about living. She also
wouldn'ttakeany lip fromthem, and even the other
HASTINGS CENTER REPORT 21
"Don Cowart has
certainly left a lasting
impression with me.
No other burn patient
has made it so clear
nurses were appalled by how rough and how rude she was to these patients.
Her patients were so angry that they would, literally,have killed her on the
spot. The other nurses began to notice that some of her patients were living,
who would not normally have lived. What may have been at work there-this
is only my hunch-is that such passion, even when it's negative, helps. When
people die, it can be just lack of any passion, negative or positive-just the
languishing.
Audience Question: Mr. Cowart, at the time that you were fighting against
treatment, your mother was fighting for continued treatment. Did you consider getting an attorney at that time?
what a difficult time
they're having and
that they really do
desire to die. That
lasting impression
has carried
throughout
my entire
life. Every burn
patient that I take
care of or any other
patient who is
critically ill-when
it comes down to
whether he lives or
dies-I
can't help
remembering
Cowart: I asked the attorney who was representing me in a personal injury
suit against the oil company whose duty it had been to maintain the pipeline
properlyto help me. He had been a long-time friend of my father's,and he also
knew me. He would not help me get the legal resources.He did go to the doctors, though, and say, "Youhave got to do more to keep him out of pain. It's
ridiculous that you'renot doing more." I tried to get family members, relatives,
friends to find another attorney for me. I wasn't able to do that. I asked the
hospital staff to take me to a pay phone there on the floor to call one, and they
said there weren'tany pay phones. I said, "Takeme to the lobby, then." They
said, "Burn patients can't leave the ward." I said, "Well let me use the phone
at the nurses'station. I know you have a phone there because I hear it ringing
all the time." They said, "No, patients aren'tallowed to use it. It's only for
staff."I wrote at least one letter privatelywith a nurse. I dictated a letter to that
nurse, and he apparently addressed it to my uncle. The letter (I don't know
whether it was the original or a copy) ended up in the doctor's file, without
my knowledge. The patient may have a right not to be treated, but without an
advocate-someone at the hospital who has the authority and power to act on
behalf of the patient-it's hard to enforce that right. Finally it was Dr. White,
the psychiatristwho was brought in to declareme incompetent, who both declared me competent and contacted an attorney for me. The attorney finally
came down from Dallas. We talked. He said he'd do what he could, but I never
heard back from him.
Don
Cowart and in my
mind should I stop or
should I continue.
This is an ongoing
Audience Question: Mr. Cowart, when you were first injured, if your intractable pain had been effectively managed, do you think that your attitude
would have been different? Do you think you might have had a very different outlook as to prolonging your life? Do you think that the pain was really the main issue that wasn't being addressed by your physicians and the
medical community, and that that interfered with your ability to really look
at the future?
battle that we have
to individualize."
-Duane L. Larson,MD
Directorof the burnunit,
JohnSealyHospital,Universityof
TexasMedicalBranch,Galveston
"DaxsCase"
fromthe videotape,
22
HASTINGS CENTER REPORT
Cowart: Your concern is what I hear time after time from many people in
who was calledin, exthe healthcareprofessions.Dr. White, the psychiatrist
pressedthat same type of concern. Another concern Dr. White had was
whetherI hada majorissuewith control,whetheronce I showedthatI was in
control,thenI wouldwantto be treated.Thatjustwasnot the case.It was not
the future that I was concerned with; it was the presentmoment, the pain that
I was undergoing.I knewthatthe physicalpainwouldbe gone eventually,but
I was not willing to tolerateit for long enough to get beyond it. Evenif my
January-February 1998
:
...'...
'..
S:.:::::::::::::::::::::
:::::::::::
...............:
::.:
i'-^!...
''
'
?
.'"
. ...:
.:.....
- .
:?".': .sS?.
...:
...?:l ....
:.-,::
:.':lf
:
......:
..
'"'i
?I
't:s-
..'^:
?'
..........
................
S... :
me declared incompetent.....
He refused to do it and in
ture.
Possibly
without
the
-pain
,
and
.possibly
with.-
think that I would want to havebeen treated,because
ofmy physicalcondition
what
and I did see asthe fuchiatrist,as you know.
ture.Possiblywithout the pain, and possibly with
muchbetter professionalsupport,maybeI could have
beenpersuaded
to go aheadandaccepttreatment.
But
you know,a psychiatrist
was not calledin to try to
a yearinto
helpme with these concernsuntil almost
And
then
they
called
the
psychiamy
hospitalization.
trist in,
not for
for the
th purpose
of helping
but
to have
have
in, not
me,
of
me,
but
to
trist
pe
helping
me declared
incompetent.
He refusedto do it andin
fact found
found me
me competent,
and so
so did
did the
the second
second psyfact
competent, and
psy-
chiatrist,
asyouknow.
AudienceQuestion:Mr. Burt,I get the impression
thatboththe medicalprofession
and the societyassumea temporary
incompetence
in anybody
Whois in
severepainor in severeemotionalgrief.Do you take
the wordof somebodyin severepainas at thatmomenttrulytheirdecision?
Is a presumption
of temporaryincompetence
justifiable?
January-February 1998
Dax Cowart
Burt: I don't like the language, "prein 1996.
sumption of temporary incompetence." It has a disrespectful and excessive quality to it. I don't think
we should operate on such a premise. What I do think
is that people in grief or extraordinarypain deserve a
response by a whole range of caretakers,personal and
professional: "I'm with you and I'll stick with you,
and I'll be as helpful as I possibly can in working this
through with you. I won't abandon you." Sometimes,
in fact maybe even frequently, I think people who are
in severe grief or severe pain have trouble, because
they feel so hopeless, believing that people are responding to them in this way. So it takes an awful lot
of assurance-not just words but being there when it
counts, and it's not something that you can just say
once and have it sink in to someone in great physical
or psychological pain. Now I don't call that incompetence; I call that humanity-our human condition.
It's naturally how people respond in times of enormous stress, woe, and trouble. In organizing caretakHASTINGS CENTER REPORT 23
ing we should be thinkingof ourselvesas responding
to that-not just in cheapwords,and that takestime.
Audience Question: It seems to me that you, Mr.
Cowart,actuallymadea veryarticulatedefenseof Mr.
Burt'spositionwhen you so ablyidentifiedthe essentials of informed consent, making the very clear
point, well respectedand recognizedin medical-legal
law, that informedvolitionalconsentdemandsa full
appraisaland understandingof the risksand benefits
of the therapy.The difficultythat I see Mr. Burt focusingon here is that thesedecisionsdon'ttakeplace
instantaneouslyin time. Evena patientwho is not in
pain, to make a fully informeddecision about the
risksversusbenefitsof treatment,hasto be ableto appropriatea differentset of attitudesand expectations,
and the processfor that is one of knowledgeand dialogue and information.Setting aside the pain issue,
which ought to be aggressively
manageable,how does
your own experiencehelp us understandhow to balance respectingthe patient'srequestwith confidence
that enough time has been given to the patient to
allow a truly informedpersonalassessmentof what
the risksand benefitsare?
Cowart:Assumingthat pain is not an issue and that
there'snot some otherissuepresentanalogousto pain
as faras the immediacyof the situationgoes, I would
not be nearlyas inclinedto favora veryshorttime pe-
24
HASTINGS CENTER REPORT
riod. I probablywould favora longerperiodof time,
maybeweeks,maybeeven months, but I don'tthink
that I would be in favorof years.As faras physicians
beingable to workwith a patientduringthat time, I
think it would probablybe good in instanceswhere
you don'thavethe immediacythat somethinglike severephysicalpain requires.The troubleI haveis how
you go aboutassessingwhatis sufficienttime fromthe
patient'sviewpoint, since we're all different. I just
knowthat for myselfI would like to havethe rightto
makemy own decisionsat zeropoint in time.At the
same time I'm willing to forgo some of my own autonomyin the interestof betterdecisionsbeingmade.
WhatI don'tknowis how to determinealways,as Dr.
Burtcallsit, when the end of the day has come. If the
patientgivesawaysome of thatautonomy,I justdon't
know how you go about protectingthe patientso he
or shecanstillsay,"Okay,I'veheardyou out, I'vetried
whatyou said,and it'snot for me."
Acknowledgments
Quotation from "Dax'sCase"used with permissionof
Choice in Dying, 1035 30th Street,N.W., Washington,
D.C. 20007.
References
1. Fromthe transcriptmade of the initial videotapeand published as an appendixto Robert Burt, TakingCareof Strangers:
Relations(New York:The Free
TheRuleof Law in Doctor-Patient
Press,1979), pp. 174-80.
January-February I 998