Autonomy & the Refusal of Lifesaving Treatment

Author(s): Bruce L. Miller

Source: The Hastings Center Report, Vol. 11, No. 4 (Aug., 1981), pp. 22-28
Published by: The Hastings Center
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IllllllIMl IIIIIllllllll I IIII
FOURCASES, FOURSENSES OF AUTONOMY -

Autonomy & the Refusal of Lifesaving Treatment

by BRUCEL. MILLER

the patient recovered, he asked that if he had a further

cardiovascular collapse no steps should be taken to pro-
C normativeethics-both theoreticaland
ontemporary, long his life, for the pain of his cancer was more than he
applied-has reacted against utilitarianismbecause of its would needlessly bear. He wrote a note to this effect in his
tendencyto regardthe individualas little more thana recip- case records and the hospital staff knew of his feelings.3
ient of good and evil. To avoid the perniciouseffect of this
notion, many philosophershave insisted thatthe conceptof CASE2. A forty-three-year-oldman was admittedto the
a person as an autonomousagent must have a centraland hospital with injuriesand internalbleeding caused when a
independentrole in ethicaltheory.' From this position there treefell on him. He needed whole bloodfor a transfusion
is firm ground to resist coercion and its less forceful, but but refused to give the necessary consent. His wife also
more pervasive, cousins: manipulationand undue influ- refused. Both were Jehovah's Witnesses,holding religious
ence. It also provides a warrantfor treatinga person's own beliefs thatforbid the infusion of whole blood. The hospi-
choices, plans, and conception of self as generally domi- tal lawyer brought a petition to the home of a judge. The
nant over what anotherbelieves to be in that person's best patient's wife, brother, and grandfather were present to
interest. express his strong religious convictions. The grandfather
In biomedicalethics, the conceptof a personas an auton- said that the patient "wants to live very much . . . He
omous agent places an obligation on physicians and other wants to live in the Bible's promised new world where life
healthprofessionalsto respectthe values of patientsand not will never end. A few hours here would nowhere compare
to let their own values influencedecisions abouttreatment. to everlasting life." Thejudge was concerned with the pa-
The conflictof patientvalues andphysicianvalues becomes tient's capacity to make such a decision in light of his se-
most troublesomewhen a patientrefuses treatmentneeded rious condition. She recognized the possibility that the use
to sustain life and a physician believes that the patient of drugs might have impaired his judgment. The hospital
should be [Link] conflict can be resolved by taking a lawyer replied that the patient was receiving fluid intra-
firm line on autonomy:any autonomousdecision of a pa- venously but no drugs that could impair his judgment. He
tient must be respected. On the otherhand, the physician's was conscious, knew what the doctor was saying, was
obligationto preservelife can be placed above the patient's aware of the consequences of his decision, and had with
right to autonomy and refusals of treatmentcan then be full understandingexecuted a statementrefusing the rec-
overriddenwhen they conflict with "medicaljudgment."2 ommendedtransfusionand releasing the hospitalfrom lia-
The notion of medicaljudgmentused here is not clear, and bility. The judge went to the patient's bedside. She asked
it may only be a gloss for "whatdoctor thinks best." Nei- him whetherhe believed that he would be deprived of the
ther extremeposition is tenable;both are insensitive to the opportunityfor "everlasting life" if transfusion were or-
complexities of such cases, and the second removes the dered by the court. His response was, "Yes. In other
right to [Link], the conflict between au- words, it is between me and Jehovah; not the courts ....
tonomy and medical judgmentis not as sharpas it seems. I'm willing to take my chances. My faith is that strong
.... I wish to live, but not with blood [Link]
get that straight." The patient had two young children.
Four Cases There was a family business and money to providefor the
Considerthe following cases. children, and a large family willing to care for them.4

CASE3. A thirty-eight-year-oldman with mild upperres-

CASE1. A doctor, sixty-eight years of age, had been
retiredfor five years after severe myocardial infarction. piratory infection suddenly developed severe headache,
He was admitted to a hospital after a barium meal had stiff neck, and highfever. He went to an emergencyroom
shown a large and advanced carcinoma of the stomach. for help. The diagnosis was pneumococcal meningitis, a
Ten days after palliative gastrectomy was performed, the bacterial meningitis almost always fatal if not treated. If
treatmentis delayed, permanent neurological damage is
patient collapsed with a massivepulmonaryembolismand
an emergencyembolectomywas done on the ward. When likely. A physician told the patient that urgent treatment
was needed to save his life and forestall brain damage.
is professor of philosophy, Medical Hu-
BRUCEL. MILLER The patient refused to consent to treatmentsaying that he
manitiesProgram,MichiganStateUniversity. wanted to be allowed to die.S

22 The Hastings Center Report, August 1981

 I _ _ I _I ___ _ _ _ __ _ _

CASE 4. A fifty-two-year-oldmarriedman was admittedto Cases 3 and 4, however, incline to the view that patient
a medical intensive care unit (MICU) after a suicide at- autonomymay be overridenby [Link] Case
tempt. He had retired two years earlier because of pro- 3 there is no apparentreason to justify the death of this
gressive physical disability related to multiple sclerosis otherwisehealthyvictim of meningitis. His medical condi-
(MS) during the fifteen years before admission. He had tion is not hopeless, as was the condition of the doctor in
successfullyadapted to his physical limitations, remaining Case 1, nor does he have a religious objectionto treatment
actively involved in family matters with his wife and two like the Jehovah's Witness in Case 2. Our intuitionis to
teenage sons. However, during the three months before treathim againsthis will. In Case 4 the patient'sdisability
admission, he had become morose and [Link] the may give us pause; it does prevent a full life, yet he had
evening of admission, while alone, he had ingested an un- manageduntil his mother-in-lawbecame ill and the family
knownquantityof diazepam. Whenhis family returnedsix began attendingto her needs. We might expect thatfamily
hours later, theyfound the patient semiconscious. He had discussion of the problem could lead to a resolution that
left a suicide note. On admission to the MICU, physician would restorethe patient'sdesire to live.
examination showed several neurologic deficits, but no At firstglance the positionthatalthoughthereis a rightto
more severe than in recent examinations. Thepatient was autonomyfrom which patients can refuse lifesaving treat-
alert and fully conversant. He expressed to the house of- ment, the rightis not absoluteand sometimesmedicaljudg-
ficers his strong belief in a patient's right to die with dig- ment can overrideit is a tenable one; for there is nothing
nity. He stressed the "meaningless" aspects of his life surprisingabout a right that is not absolute.7However, ac-
related to his loss of function, insisting that he did not knowledging the limits of rights does not mean that rights
want vigorous medical intervention should serious com- can be overridenwhen their exercise conflicts with others'
plications develop. This position appeared logically co- judgments. If medical judgment can override the right to
herent to the MICU staff. However, a consultation with refusalof treatment,then all four patientsshouldhave been
membersof the psychiatric liaison service was requested. treatedagainst their will, for in each case a physician be-
During the intitial consultationthe patient showed that the lieved thatthe patientshould be [Link] this is implausi-
onset of his withdrawaland depression coincided with a ble, given our intuitionson Cases 1 and 2, then we have to
diagnosis of inoperable cancer in his mother-in-law, who say that autonomyis supremeand the refusalsof lifesaving
lived in another city. His wife had spent more and more treatmentshould have been respectedin all four cases.
time satisfying her mother'sneeds. Infact, on the night of One way aroundthis impasseis to develop a list of condi-
his suicide attempt,thepatient's wife and two sons had left tions thatmustbe takeninto accountto determinewhethera
him alone for the first time to visit his mother-in-law.6 refusal of treatmentshould be respected,8for example, age
of the patient, life expectancywith and without treatment,
In the firsttwo cases, the most compelling intuitionis to the level of incapacitywith and withouttreatment,the de-
respectthe refusalof [Link] patientsare competent, gree of pain and suffering, the effect of the time and cir-
exercisingtheir rightof autonomyto refuse treatmentsthey cumstancesof deathon family and friends, the views of the
believed not in [Link] patientin Case 1 believed family on whetherthe patientshould be treated,the views
furtherresuscitationwas needless, for it would only briefly of the physician and other medical staff, and the costs of
prolonga life of [Link] concernwas for life on [Link] is a plausibleapproach;with it the refusalof
[Link] patientin Case 2 believed the transfusionswould treatmentfor meningitiscan be justifiablyoverridenand the
deprive him of salvation. His concern for life hereafter refusal of treatmentfor the doctor suffering from cancer
made whateverlife on earthhe could get from the transfu- justifiablyrespected. The meningitis patient is young and
sions insignificant. In Case 2 the SuperiorCourt and the will recover without residualdefect to lead a full life; the
Court of Appeals recognized the patient's right to refuse cancerpatientwill die soon in any case, is sufferinggreatly,
transfusion and none was given. Though the patient's and even thoughresuscitatedis not likely to survive with a
chances were thought very slim, he recovered and was dis- capacity for conscious awareness.
chargedfrom the hospital. In Case 1, two weeks after the The problemwith this approachis twofold. First, the list
embolectomythe patientsuffered acute myocardialinfarc- of characteristicsis so vague, and hence subjectto alterna-
tion; his heartwas restartedfive times in one night. He re- tive interpretations,that the right to autonomy, and with it
covered to linger for three weeks in a coma. On the day his the right to refuse lifesaving treatment,can again be over-
heartstopped,plans were being made to put him on a respi- ruled. In practiceit might turnout thatrefusalsof treatment
rator. The Jehovah's Witness was fortunate,retaininghis would be respectedonly if there were few negative conse-
life on earthwithoutriskingthe loss of life [Link] quences and everyone agreed with the decision. Second,
physicianwas not so lucky;his rightto an autonomousdeci- this view shifts the focus from the patient's refusal to the
sion concerningthe mannerof his own death fell victim to patient's condition. Appealing to a list of diagnostic and
the technological imperative-"If you can do it, you prognosticfeatures and to the consequences for others of
should do it." treatment versus nontreatmentmakes the decision one

The HastingsCenter 23
 II

about the patient ratherthan one by the patient. The pa- no apparentor [Link] action is unusual
tient'srefusalbecomes simply one of many factorsto weigh for a given actorif it is differentfrom what the actoralmost
in arrivingat a decision. But the thrustof placing the pa- always (or always) does in the circumstances,as in, "He
tient'srightto autonomyin the forefrontof medicalethics is always flies to Chicago, but this time he took the train."If
to counteractjust thattendencyto securethose decisionsfor an action is not of the sort that a person eitherusually does
patientsthat are appropriatelytheirs. An approachthatpre- or does not do, for example, something more like getting
serves this prioritymust be developed. marriedthan drinkingcoffee, it can still be a surpriseto
those who know the person. "What!George got married?"
A person'sdispositions,values, and plans can be known,
Four Senses of Autonomy
and particularactions can then be seen as not in conformity
If the concept of autonomy is clarified, we will have a with them. If the action is not of serious import, concern
more rigorousunderstandingof what the rightto autonomy about its authenticityis [Link] ask of a person
is and what it means to respectthatright, thus illuminating who customarilydrinks beer, "Are you sure you want to
the problemsregardingrefusals of lifesaving [Link] drinkwine?" is to make much of very little. If an explana-
the firstlevel of analysisit is enoughto say thatautonomyis tion for the unusualor unexpectedbehavioris apparent,or
self-determination,thatthe rightto autonomyis the rightto given by the actor, that usually cuts off concern. If no ex-
make one's own choices, and that respect for autonomyis planationappearson the face of thingsor if one is given that
the obligationnot to interferewith the choice of anotherand is unconvincing, then it is appropriateto wonder if the ac-
to treatanotheras a being capableof choosing. This is help- tion is really one that the person wants to take. Often we
ful, but the concept has more than one meaning. There are will look for disturbancesin the person's life that might
at least four senses of the concept as it is used in medical account for the inauthenticity.
ethics: autonomyas free action, autonomyas authenticity, It will not always be possible to label an action authentic
autonomyas effective deliberation,and autonomyas moral or inauthentic,even where much is known abouta person's
reflection.9 attitudes,values, and life plans. On the otherhand, a given
Autonomyasfree action. Autonomyas free actionmeans dispositionmay not be sufficientlyspecific to judge that it
an actionthatis voluntaryand [Link] actionis vol- would motivatea particularaction. A generouspersonneed
untaryif it is not the result of coercion, duress, or undue not contributeto every cause to merit that [Link] a
influence. An action is intentionalif it is the conscious ob- person's financialgenerosity is known to extend to a wide
ject of the actor. To submit oneself, or refuse to submit range of liberalpolitical causes, not making a contribution
oneself, to medical treatment is an action. If a patient to a given liberalcandidatefor political office may be inau-
wishes to be treatedand submitsto treatment,thataction is thentic. On the other hand, most people have dispositions
[Link] a patientwishes not to be treatedand refuses that conflict in some situations;an interestin and commit-
treatment,thattoo is an intentionalaction. A treatmentmay ment to scientificresearchwill conflictwith fear of invasive
be a free actionby the physicianand yet the patient'saction procedureswhen such an individualconsidersbeing a sub-
is not free. If the meningitisvictim is restrainedand medi- ject in [Link] questionsaboutthis sense of
cation administeredagainst his wishes, the patienthas not autonomy cannot be explored here, for example, whether
voluntarilysubmittedto [Link] the patient agrees to there can be authenticconversionsin a person'svalues and
pain relief medication,but is given an antibioticwithouthis life plans.
knowledge, the patient voluntarilysubmittedto treatment, Autonomyas effective deliberation. Autonomy as effec-
but it was not a free action because he did not intend to tive deliberationmeans action taken where a person be-
receive an antibiotic. The doctrine of consent, as it was lieved thathe or she was in a situationcalling for a decision,
before the law gave us the doctrine of informed consent, was aware of the alternativesand the consequencesof the
requiredthatpermissionbe obtainedfrom a patientand that alternatives,evaluatedboth, and chose an action based on
the patient be told what treatmentwould be given; this that [Link] deliberationis of course a matter
maintainsthe right to autonomyas free action. Permission of degree; one can be more or less aware and take more or
to treat makes the treatmentvoluntaryand knowledge of less care in makingdecisions. Effective deliberationis dis-
what treatmentwill be given makes it intentional. tinct from authenticityand free action. A person's action
Autonomy as authenticity. Autonomy as authenticity can be voluntaryand intentionaland not result from effec-
means that an action is consistent with the person's atti- tive deliberation,as when one acts impulsively. Further,a
tudes, values, dispositions, and life plans. Roughly, the person who has a rigid pattern of life acts authentically
personis actingin [Link] authen- when he or she does the things we have all come to expect,
ticity is revealed in comments like, "He's not himself to- but withouteffective [Link] medicine, there is no
day" or "She's not the JaneSmithI know." For an actionto effective deliberationif a patientbelieves thatthe physician
be labeled "inauthentic"it has to be unusualor unexpected, makes all the decisions. The doctrineof informedconsent,
relativelyimportantin itself or its consequences, and have which requiresthat the patientbe informedof the risks and

24 The Hastings Center Report,August 1981

benefits of the proposedtreatmentand its alternatives,pro- most demandingwhen it is conceived as reflectionon one's
tects the right to autonomywhen autonomyis conceived as complete set of values, attitudes,and life plans. It requires
effective deliberation. rigorous self-analysis, awarenessof alternativesets of val-
GeraldDworkinhas shown that an effective deliberation ues, commitmentto a method for assessing them, and an
must be more than an apparentlycoherent thought proc- abilityto put them in place. Occasional,or piecemealmoral
ess.10 A person who does not wear automobile seat belts reflectionis less demandingand more common. It can be
may not know that wearing seat belts significantlyreduces broughtabout by a particularmoral problem and only re-
the chances of death and serious injury. Deliberationwith- quires reflection on the values and plans relevant to the
out this knowledge can be logically coherentand lead to a problem. Autonomy as moral reflection is distinguished
decision not to wear seat belts. Alternatively,a personmay from effective deliberation,for one can do the latterwithout
know the dangers of not wearing seat belts, but maintain questioningthe values on which one bases the ohoice in a
that the inconvenience of wearing them outweighs the re- [Link] one's values may be occasioned
duced risk of seriousinjuryor death. Both deliberationsare by deliberationon a particularproblem, so in some cases it
noneffective:the firstbecause it proceedson ignoranceof a may be difficult to sort out reflection on one's values and
crucialpiece of information;the second because it assigns a plans from deliberationusing one's values andplans. Moral
nonrationalweighting to alternatives. reflection can be related to authenticityby regardingthe
It is not always possible to separatethe factual and eval- formeras determiningwhat sortof personone will be andin
uative errorsin a noneffective deliberation.A patient may comparisonto which one's actionscan be judged as authen-
refuse treatmentbecause of its pain and inconvenience,for tic or inauthentic.
example, kidney dialysis, and choose to run the risk of se-
rious illness and death. To say that such a patienthas the
relevantknowledge, if all alternativesand their likely con- ResolvingApparentConflicts
sequenceshave been explained, but made a nonrationalas- The distinctionof four senses of autonomycan be used to
signmentof priorities,is much too simple. A more accurate resolve the apparentconflict between autonomyand medi-
characterizationmay be that the patient fails to appreciate cal judgmentthatthe four cases [Link] action of the
certainaspects of the [Link] patientmay be cog- Jehovah'sWitnessin Case 2 is autonomousin at least three
nitively aware of the pain and inconvenience of the treat- of the senses. It was a free action because it was voluntary
ment, but becausehe or she has not experiencedthem, may and intentional. The patient was not being coerced and
believe that they will be worse than they really are. If the knew whathe was doing. It was an authenticactionbecause
patient has begun dialysis, assessment of the pain and in- it was demanded by a strongly held religious belief. A
convenience may not take into account the possibilities of Jehovah'sWitness who acceptedtransfusionunderthe cir-
adaptingto them or reducing them by adjustmentsin the cumstances would be regarded as one who lacked the
treatment. strengthof commitmentto resist earthly temptations;this
In order to avoid conflating effective deliberationwith would not be cause for blame, for it is understandableand,
reachinga decision acceptableto the physician, the follow- if you are not a Jehovah'sWitness, [Link] ac-
ing must be kept in mind: first, the knowledge a patient tion was the result of effective deliberationbecause the pa-
needs to decide whetherto accept or refuse treatmentis not tient knew he had a choice, was aware of the alternatives
equivalentto a physician's knowledge of alternativetreat- and their consequences, evaluatedthem on his values, and
ments and their consequences; second, what makes a made a choice. The situationwas so clear and his belief so
weightingnonrationalis not thatit is differentfrom the phy- strongthatthe deliberationprobablydid not take much time
sician's weighting, but eitherthatthe weightingis inconsis- and thought;effective deliberationis long and painstaking
tent with other values that the patientholds or that there is only when the matterfor decision is perceived to be diffi-
good evidence thatthe patientwill not persistin the weight- cult. Whetherthe patientengaged in moralreflectionis dif-
ing; third,lack of appreciationof aspectsof the alternatives ficult to [Link] case is not sufficientlydetailed to
is most likely when the patient has not fully experienced know whetherthe patientever carefullyreflectedon his reli-
them. In some situationsthere will be overlapbetween de- gious beliefs. One can have strongbeliefs withoutever hav-
terminationsof authenticityand effective [Link] ing thoughtcarefullyaboutthem. Further,since no position
does not undercutthe distinctions between the senses of has been taken on just what the standardsfor adequate
autonomy;ratherit shows the complexity of the concept. moral reflectionare, it is not possible to make a determina-
Autonomyas moral reflection. Autonomy as moral re- tion even if all the facts were there. Whetherone can, or
flectionmeansacceptanceof the moralvalues one acts on." should, choose a life plan or a religious belief by reasoned
The values can be those one was dealt in the socialization inquiry(effective deliberationat the most generallevel) is a
process, or they can differ in small or large [Link] any matterof controversyin philosophy and theology.
case, one has reflected on these values and now accepts In Case 1, the physicianwith cancer, the refusalof treat-
them as one's own. This sense of autonomyis deepest and ment was a free action, authentic,and the resultof effective

The Hastings Center 25

[Link] decision to treat the patient after he had fails to distinguishthe action of taking the overdose of di-
refusedresuscitationin the event of cardiovascularcollapse azepam from his saying that he wanted no treatmentand
was clearly a violation of his [Link] did not volun- that he wanted to die with dignity. It was his conscious
tarily submit to treatment;he was treated against his will desire to take the diazepamandto refuse treatment;whether
even though no force or threatof force had to be used. He it was his conscious desire to die with dignity is a separate
did not intend to submit to treatment,his conscious desire [Link] answerrequiresadducingconsiderationsthatbe-
was not to be treated. The authenticityof the refusal of long to the notion of autonomyas [Link] belief
treatmentis less a matterof identifying a particularstrong thatthe patientdid not want to die dependson knowing that
belief and showing that the action is in accord with it, than he had gotten on very well for many years, thathis change
it is a matterof the patientannouncingthatfurtherresuscita- of view was coincidentto the illness of his mother-in-law
tion would incur needless suffering. Because this patientis and the family's attentionto her, that a desire to die is not
a physicianwho has seen such sufferingand is now under- consistentwith the values revealedby the past severalyears
going it, it is more likely that the assertionis coming from of the patient'slife, and that there is no apparentor prof-
the patient's values, and not as something that is not an fered explanationof a changein values but insteadan expla-
authenticexpressionof himself. The refusal also appearsto nation of the alleged desire for death with dignity as a way
be the result of effective deliberation:the patientknew the of assertinghis demandson his family. His suicide attempt,
alternatives and their consequences, his assessment and the taking of diazepam, and refusal of treatmentwere free
weighting of them cannot be regardedas nonrationalor a actions, but they were not authentic.
lack of [Link] we do not know whether and The claim that the patient'staking of diazepam was the
how this patienthas reflectedon the fundamentalvalues that result of effective deliberationis more difficult to defend.
determinehis judgment,but to requirethat he subjectthem The hospital staff regardedthe explanationas logically co-
to some sort of reflectionbefore his wishes have to be re- herent,but the appearanceof logical coherenceis not suffi-
spectedwould be to set the standardsof autonomytoo high. cient for effective [Link] the patientlackedrelevant
In Case 4, the man with MS who attemptedsuicide, the knowledge, made a nonrationalassignment of weights to
action of the patientis a free action, that is, voluntaryand alternativesor failed to appreciateone of the alternativesor
intentional,and it is the result of effective deliberation,but its consequences,then the decision to take an overdose and
it is not [Link] was the outcome of the case: requestthatlifesaving measuresnot be startedwould not be
The patient had too much pride to complain to his wife the result of effective deliberation. The case description
lacks the detailrequiredto reacha definiteconclusionon all
about his feelings of [Link] was able to recog-
of these. The most difficultis whetherthe patientoveresti-
nize that his suicide attempt and his insistence on death
matedthe difficultyof continuinghis life as a victim of MS;
with dignity were attemptsto draw thefamily's attentionto
it is hard to imagine that he lacked knowledge, and even
his needs. Discussion with allfour family membersled to
though we might regardhis weighting of deathversus con-
improvedcommunicationand acknowledgmentof the pa- tinued life in his condition as mistaken, the severity of his
tient's special emotional needs. After these conversations,
conditionand the difficultyof coping with it do not readily
the patient explicitly -retracted both his suicidal threats
and his demand that no supportivemedical efforts be un- supporta claim that it is not a rationalweighting. Further,
he is the personwith MS andhe is the one who has suffered
dertaken.12
it for fifteen years; for anotherperson to believe that the
It is tempting to say that the actions of the patient, the patientfails to appreciatethe severityof his conditionseems
suicide attemptand the refusal of treatment,were not free on its face to discountthe most relevantexperience. On the
actionsbecause they were neithervoluntarynor intentional. other hand, his appreciationat the time of the attempted
Even though the patient was not coerced directly by an- suicide might be said to have been alteredby the perceived
other,he was pressuredinto the actionsby his conditionand threatto his care and comfort. More informationis required
the circumstancesof his mother-in-law'sterminalillness. to decide this;even if his actionis ultimatelyregardedas the
Further,it was not an intentionalaction because he did not result of effective deliberation,it is still not [Link]
really want to die; he wanted attentionand support. This might even say that the lack of authenticityinfluences the
position is not defensible. First, the claim that the actions effectivenessof the [Link] strongly,if an action
were not voluntaryrests on the fact that the pressure of is not authentic,whetherit is the resultof effective delibera-
circumstancesas a motivatingfactor can be as strongas the tion becomes somewhat irrelevant;it is ratherlike asking
directthreatof anotherperson. Indeed, it is easy to imagine whethera personeffectively decided a matterbased on val-
cases whereit would be [Link] is importantto preserve ues or plans thatwere not his own. As in the othercases, we
a clear and distinctconceptof voluntariness,and treatsimi- have no clear evidence that the patient ever engaged in
lar but distinguishablesituationsunder a differentrubric. moralreflection,or if he did thatthe values andlife planshe
Second, the claim thathis action was not intentional,that reflectedabouthad directbearingon the issues presentedby
is, not his conscious object, is wrong for two reasons. It his attemptedsuicide. It does seem that a person who has

26 The Hastings Center Report, August 1981

had to manage his life with a seriously debilitatingillness mous in the sense of free action, the physicianis obliged to
must have given some thoughtto what is importantto him see that the coercion is removed or that the person under-
and what sort of life plan is suited to him. stands what he or she is doing. Is it possible that coercion
In the case of the patient in the emergency room with cannotbe removedor thatthe action cannotbe made inten-
meningitis, his refusal of treatmentis autonomousin the tional?This could be the case with an incompetentpatient,
sense of free action. But is it authenticand the result of not externallycoerced, but subject to an internalcompul-
effective deliberation?This is difficult to determineunless sion, or who lacked the capacity to understandhis or her
someone in the emergencyroom knew the patientwell or is [Link] incompetentpatientsthe questionof honoring
able to get to know the patient well. Presumablyno one refusals of treatmentdoes not arise; it is replaced by the
knows him and thereis not enoughtime to get to know him; issue of who should make decisions for incompetentpa-
if treatmentis delayed there is risk of brain damage and tients, an issue beyond the scope of this article.
death. Assuming thatthe patienthas the capacityfor auton- If a refusalof treatmentis a free actionbut thereis reason
omy in all four senses, treatinghim would be contraryto his to believe thatit is not authenticor not the resultof effective
autonomyin the sense of free action;whetherit would be a deliberation,then the physician is obliged to assist the pa-
violation of his autonomy in the senses of authenticity, tient to effectively deliberateand reach an authenticdeci-
effective deliberation,and moralreflectioncannotbe deter- sion. This is whathappenedin Case 4. It is not requiredthat
mined. Treatinghim would makepossible his furtherdelib- everyone bringabout, make possible, or encourageanother
erationon whetherhe wished to live. On balance, it is more to act authenticallyand/oras a result of effective delibera-
respectfulof autonomy, given all four senses, to treathim tion. Whethersuch an obligationexists depends on at least
againsthis will. On the otherhand, it might be arguedthat two factors:the natureof the relationshipbetween the two
meningitis has made the patient [Link] the persons and how serious or significantthe action is for the
patienthas voluntarilyand intentionallyrefused treatment, actor and others. Comparethe relationshipsof strangers,
his disease has removed his capacityto act authenticallyor mere acquaintances,and buyer and seller on the one hand,
to effectively [Link] this is so, then the patient'sre- with those of close friends, spouses, parentand child, phy-
fusal is not an autonomousaction, and the obligation to sician and patient, or lawyer and client. To borrow, and
respect the autonomyof patientswould not be abridgedby somewhatextend, a legal term, the latterare fiduciaryrela-
treatingthe patient against his wishes. tionships;a close friend, parent,spouse, physician, or law-
yer cannottreatthe otherpersonin the relationshipat arms'
A Bridge between Paternalismand Autonomy length, but has an obligation to protect and advance the
interestsof the other. For example, we have no obligation
This discussion shows thatthere is no single sense of au- to advise a mere acquaintanceagainst making an extrava-
tonomy and that whether to respect a refusal of treatment gant and unnecessarypurchase, though it is an option we
requiresa determinationof what sense of autonomyis satis- have so long as we do not go so far as to interferein some-
fied by a patient'srefusal. It also shows that thereneed not one else's business. The situation is different for a good
be a sharp conflict between autonomy and medical judg- friend, a close relative, or an attorneywho is retainedto
ment. Jacksonand Youngnerarguethatpreoccupationwith give financialadvice.
patient autonomy and the right to die with dignity pose a The otherfactor, the seriousnessof the action, is relevant
"threatto sound decision making and the total (medical, to medical and nonmedicalcontexts. If, inspiredby the lure
social and ethical) basis for the 'optional' decision."13 of a "macho" image, my brotherimpulsively decides to
Sound decision making need not run counterto patientau- buy yet anotherexpensive automobile,how I respondwill
tonomy;it can involve a judgmentthat the patient'srefusal depend on how it will affect him and his [Link] a
of treatmentis not autonomousin the appropriatesense. patientrefuses a treatmentthatis elective in the sense thatit
What sense of autonomyis requiredto respect a particular might benefithim if done but will not have adverseconse-
refusal of treatmentis a complex question. quences if not done, a physician can accept such a refusal
If a refusalof lifesaving treatmentis not a free action, that even though it is believed not to be the result of effective
is, is coercedor not intentional,thentherecan be no obliga- [Link] the other hand, if the refusal of treatment
tion to respectan [Link] is importantto note has serious consequencesfor the patient, the physicianhas
that if the action is not a free action then it makes no sense the obligationto at least attemptto get the patientto make a
to assertor deny that the action was autonomousin any of decision thatis authenticandthe resultof effective delibera-
the other senses. A coerced action cannot be one that was tion. For the patientwith meningitiswho refuses treatment
chosen in accord with the person's characterand life plan, (Case 3) the consequencesof the refusalare indeed serious,
nor one thatwas chosen aftereffective deliberation,nor one but there is no opportunityto determinewhetherthe deci-
thatwas chosen in accordwith moralstandardsthatthe per- sion is authenticand the resultof effective deliberationand,
son has reflectedupon. The point is the same if the actionis if not, to encourage and make possible an authenticand
not [Link] a refusal of treatmentis not autono- effectively deliberateddecision.

27
The Hastings Center
 _ I ---- --

A crucialissue is whethera refusalof lifesaving treatment Die," British Medical Journal 1 (1968), 442; it is reprintedin Tom L.
thatis autonomousin all four senses can be justifiablyover- Beauchamp and James F. Childress, Principles of Biomedical Ethics
(New York: Oxford University Press, 1979), p. 263.
ridden by medical judgment. It will help here to compare 4This case is drawn from In Re Osborne, 294 A.2d 372 (1972).
the Jehovah'sWitness case with a somewhat fanciful ex- SThis case is drawn from Eric J. Cassell, "The Function of Medi-
pansion of the meningitiscase. The former'srefusal is au- cine," Hastings Center Report 6 (1976), 16.
6This case is drawn from Jackson and Youngner, p. 406.
tonomous in three of the four senses and could be judged 7Ibid., p. 408.
autonomousin the sense of moral reflection if we knew 8MarkSiegler, "CriticalIllness: The Limits of Autonomy" Hast-
more about the patient's acceptanceof his faith and had a ings Center Report 8(1977), 12-15.
clear idea of the criteriafor moral reflection. Though the 9Beauchampand Childress, pp. 56-62; Donagan, p. 35; Gerald
Dworkin, "Autonomyand Behavior Control,"Hastings CenterReport
belief of Jehovah's Witnesses are not widely shared, and 6(1976), 23; and "Moral Autonomy" in H. TristramEngelhardtand
Daniel Callahan, Morals, Science and Society, (Hastings Center,
many regard as absurd the belief that accepting a blood 1978), p. 156; HarryG. Frankfurt,"Freedomof the Will and the Con-
transfusionis prohibitedby biblical injuncton, their faith cept of a Person," TheJournal of Philosophy 68(1971), 5; BernardGert
has a fair degree of social acceptance. Witnesses are not and Timothy J. Duggan, "Free Will as the Ability to Will" Nous 13
regarded as lunatics. This is an importantfactor in the (1979), 197; Charles Taylor, "Responsibility for Self" in Amelie
Rorty, ed. The Identitiesof Persons (Berkeley: University of California
recognitionof theirrightto refuse [Link] Press, 1976).
the meningitisvictim had a personalset of beliefs that for- l?GeraldDworkin, "Paternalism,"in Richard A. Wasserstrom,ed.
bid the use of drugs, thatafteryears of reflectionhe came to Morality and the Law (Belmont: WadsworthPublishing Co., 1971).
"This brief account draws on Dworkin, "Moral Autonomy," and
the view that it was wrong to corruptthe purityof the body Taylor.
with foreign [Link] thathe acts on this belief '2Jacksonand Youngner.
consistentlyin his diet and medical care, that he has care- 31Ibid.,p. 405.
"4Dworkin,"Paternalism";Bernard Gert and Charles M. Culver,
fully thoughtaboutthe fact thatrefusalin this circumstance "PaternalisticBehavior," Philosophy and Public Affairs 6(1976), 45;
may well lead to death, but he is willing to run that risk and "The Justification of Paternalism," in Wade L. Robison and
because his belief is strong. This case is parallel to the Michael S. Pritchard, eds. Medical Responsibility: Paternalism, In-
formed Consent, and Euthanasia (Clifton, N.J.: HumanaPress, 1979),
Jehovah'sWitnesscase; the principaldifferenceis thatthere pp. 1-14.
is no large, organizedgroup of individualswho share the
belief and have promulgatedand maintainedit over time.
One reactionis to regardthe patient as mentally incompe-
tent, with the centralevidence being the patient's solitary
stance on a belief thatrequiresan easily avoided death. An Visiting Senior Scholar Program
alternativeapproachis to not regardthe patientas incompe- at The Hastings Center
tent, but to see treatmentas justified [Link], 1982-1983
the position could be that a refusal of lifesaving treatment
that is fully autonomous,thatis, in all four senses, must be The HastingsCenteris now acceptingapplications for its
1982-1983 VisitingSeniorScholarProgram,to commence
respectedeven though the belief on which it is founded is
eccentricand not socially accepted. Which approachto take September1, 1982.
Undera grantfromthe HenryR. LuceFoundation,The
would requirean analysis of incompetence, a definitionof
HastingsCenteris able to appointan establishedsenior
paternalism,and an examinationof when it is justified.14 scholarfor the academicyear 1982-1983 to a visiting
Defining paternalismas an interferencewith autonomyin residentialstaff fellowship. The senior scholar will be
one or more of the four senses might be an illuminating expectedto spendapproximately half of his or her time at
approach. the Centertakingpartin ongoingresearchprojectsandwill
The conflict between the rightof the patientto autonomy be free for the other half to pursuepersonalresearch
and the physician'smedicaljudgmentcan be bridgedif the [Link] researchinterestsof applicantswill be ex-
conceptof autonomyis given a morethoroughanalysisthan pected to overlapwith ongoing work or projectsat the
it is usually accordedin discussions of the problem of re- [Link] distinguished scholarlyand
fusal of lifesaving [Link] some cases where medical publicationrecordin a field or fields directlypertinentto
the workof the [Link] VisitingSeniorScholarwill
judgmentappearsto overrideautonomy,the four senses of be expectedto spendten full monthsin residenceat the
autonomyhave not been taken into account. [Link] stipendwill rangefrom$35,000-$40,000 for
REFERENCES the ten-monthperiodandadditionalfundswill be provided
to assist in costs incidentalto relocatingin Hastings.
'Alan Donagan, The Theory of Morality (Chicago: The University The HastingsCenteris an equal opportunity employer.
of Chicago Press, 1977); Ronald Dworkin, Taking Rights Seriously For applicationsor furtherinformation,write to Bonnie
(Cambridge:HarvardUniversityPress, 1977); John Rawls,A Theoryof The HastingsCenter,360
Justice (Cambridge:HarvardUniversity Press, 1971). Baya, PersonnelCoordinator,
2David L. Jackson and Stuart Youngner, "Patient Autonomy and Broadway,Hastings-on-Hudson, N.Y. 10706.
'Death with Dignity,"' The New England Journal of Medicine 301
(1979), 404.
3Thiscase is drawnfrom W. St. C. Symmers, Sr., "Not Allowed to

28 The Hastings Center Report, August 1981