Patients’ Responsibilities in Medical Ethics

PATIENTS' RESPONSIBILITIES INMEDICAL ETHICS

HEATHER DRAPER AND TOM SORELL

ABSTRACT

Patients have not been entirely ignored in medical ethics. There has been ashift from the general presumption that `doctor knows best' to a heightenedrespect for patient autonomy. Medical ethics remains one-sided, however.It tends (incorrectly) to interpret patient autonomy as mere participationin decisions, rather than a willingness to take the consequences. In thisrespect, medical ethics remains largely paternalistic, requiring doctors toprotect patients from the consequences of their decisions. This is reflectedin a one-sided account of duties in medical ethics. Duties fall mainly ondoctors and only exceptionally on patients. Medical ethics may exemptpatients from obligations because they are the weaker or more vulnerableparty in the doctor-patient relationship. We argue that vulnerability doesnot exclude obligation. We also look at others ways in which patientresponsibilities flow from general ethics: for instance, from responsibilitiesto others and to the self, from duties of citizens, and from theresponsibilities of those who solicit advice. Finally, we argue that certainduties of patients counterbalance an otherwise unfair captivity of doctorsas helpers.

INTRODUCTION

Medical ethics is one-sided. It dwells on the ethical obligations ofdoctors to the exclusion of those of patients. This one-sidednessmay have something to do with the use in standard medical ethicsof the concept of autonomy. We begin by calling attention tosome of the limitations of that use of the concept. We then turnto the responsibilities that we think patients have to doctors:those that arise from general ethical obligations, and those thatarise from the doctor-patient relationship. Finally, we consider

Bioethics ISSN 0269-9702Volume 16 Number 4 2002

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how doctors ought to respond when patients fail in their duties tothem.

THE ONE-SIDEDNESS OF MEDICAL ETHICS

Medical ethics tends to focus on only one side of the doctor-patient relationship. One reason for this is that standard writingin medical ethics is directed at a professional audience. Althoughit is hard for anyone to claim that patients can do no wrong, thewrong they do seems to be out of place in writing or teachingdirected to doctors. In this respect, medical ethics resemblesbusiness ethics, which often overlooks the immorality andunreasonableness that customers can be guilty of.1 Even thoughdoctors are likely to remain the main audience for medicalethics, it does not follow that medical ethics is solely the ethics ofthe doctor's role or even the ethics of the more inclusive role ofthe health care professional. It extends to patients as well.

An analogy may make this clearer. In the UK, the rule-book forusers of public roads is called the Highway Code. In practice, theHighway Code is only studied by learner car drivers, and most ofthe code is addressed to people in charge of motor vehicles.Drivers have to pass a test of their knowledge of the HighwayCode before being given a licence. Pedestrians are neverrequired to learn the code unless they are also drivers, and inthe UK many pedestrians who own no cars are probably entirelyignorant of its provisions for those who travel the roads on foot.But the fact that pedestrians are ignorant of the rules and haveno incentive to learn them, does not mean that rules addressedto pedestrians do not exist or that they cannot be broken, still lessthat they are out of place in a rule-book for road users.Pedestrians stand to the rules of the road in the UK as patientsstand to the rules of the health care system. Doctors are likedrivers. They have to pass examinations for professionalqualifications that require knowledge of, or even evidence of,ethical conduct. Patients are like pedestrians. They do not have

1 There are special reasons why in business ethics the transgressions ofcustomers may not only be overlooked but denied. The belief that the customeris always right dies hard in both professional ethics and the wider consumerculture from which most of us sometimes benefit. For a discussion of the one-sidedness of this belief, see T. Sorell. The Customer is not Always Right. Journalof Business Ethics 1994; 13: 913±918. For applications of this line of thought toconsumerism in thinking about patients in the National Health Service in theUK, see T. Sorell. Morality, Consumerism and the Internal Market in HealthCare. Journal of Medical Ethics 1997; 23: 71±76.

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to pass a test to qualify as patients, but how they behave affectsothers involved in the health care system, sometimes adversely.Just as the Highway Code does not consist simply of provisionsrelevant to those of its audience who need to pass tests, somedical ethics may have an audience beyond doctors or healthcare professionals. Just as the compilers of the rules of the roadhave good reasons for including rules for pedestrians, so writersof medical ethics have reason to recognise obligations onpatients. Text books like the best-selling Principles of BiomedicalEthics by Tom Beauchamp and James Childress ± which we shalltake in this paper to embody `mainstream medical ethics' ±should either be re-named or else find principles of biomedicalethics that can be applied to takers and givers of health carealike.

The one-sidedness of mainstream medical ethics in respect ofthe doctor-patient relationship is more than a matter of beingdirected at an overly narrow audience. There is also anunevenness in the distribution of the moral burdens. Mainstreammedical ethics puts a big and largely unconditional responsibilityon doctors to treat patients `no questions asked'. This obligationcan take either of two forms. In wartime, doctors are obliged totreat everyone equally ± friend or foe. The peacetime counterpartof this is that paedophiles, rapists and murders are supposed tobe treated without reference to their crimes or moral character.Again, doctors treat patients without making judgements aboutthe cause of their illness. Unless it affects their treatment, doctorsare not expected to ask how patients came to be ill or damaged.What is learned during the history taking should not bepermitted to colour the doctor's view of the patient, who mustbe treated impartially. Nor can doctors turn away patients whoare in acute need of treatment but who cannot pay. In thisrespect, medical ethics is quite unlike business ethics. It isreasonable for a plumber, even in an emergency, to ensure thathe can be paid before starting a job, and it is reasonable for ashop to ask how the goods came to be faulty before offering areplacement.

In comparison to what it asks of doctors, mainstream medicalethics makes very few demands of patients, and these usuallybegin and end with consent. Traditionally, medical ethics hasasserted that, as autonomous agents, competent patients must beallowed to decide for themselves the course of their medicaltreatment, and even whether to be treated at all. It is for thedoctor to communicate effectively all the relevant information,assess the patient's competence, persuade without coercing, and

PATIENTS' RESPONSIBILITIES IN MEDICAL ETHICS 337


abide by whatever decision the patient makes. Little or nothing issaid about what kinds of decisions patients ought to make. Nor ismuch said about their responsibilities for making good ratherthan bad decisions. Indeed, with the exception of recentliterature on responsible uses of resources (a topic to which wewill return), mainstream medical ethics implies that a competentpatient's decision is good simply by virtue of having been madeby the patient. At times it seems as though patients never make,or cannot make, bad decisions. Bad decisions may be explainedaway ± sometimes by the courts ± as the doctor's failure to gainproper consent2 or failing this, the doctor's failure to overridethe wishes of the patient and act in her best interests instead!3

Yet if autonomy in medical ethics is to mean the same as ingeneral ethics ± and surely it is supposed to ± autonomy must gohand in hand with taking responsibility for what is chosen. Inparticular, if things go badly, a decision made by a patient cannotsuddenly turn into a piece of negligence on the doctor's part. Butin medical ethics the duty of care often trumps the need forautonomous patients to take the bad consequences of the badchoices they knowingly make. Even though one of thejustifications for obtaining patient consent is that it is the patientwho has to live with the consequences of her decision, doctorsroutinely rescue patients from the consequences of theirdecisions ± such as decisions to drink and smoke too much ±and in the process rescue patients from taking the consequencesthat their pretensions to autonomy are supposed to expose themto. In the same way, doctors are obliged to be blind to how thepatient came to suffer those consequences, even if the current fixshe is in results from autonomously choosing not to followmedical advice.

Is there any moral basis for this approach to patients? There isthe undoubted vulnerability of patients to negligent orincompetent or insensitive treatment by doctors, and theirrelative powerlessness and ignorance when it comes to certaindecisions about their treatment. These things call for theprotection of patients against those treating them, or perhapsfor measures ± legal and educational ± that make patients moreequal in decision-making processes affecting them. But the keything ± the thing that seems to make intelligible the kinds ofmoral duties that doctors have to inform patients and to act only

2 For example, Sidway v Bethlem RHG [1985] 1 All ER 643.3 For an example see Unnecessary hysterectomy? The Journal of the Medical

Defence Union 1999; 15: 20±22.



when necessary and on the best information ± is the vulnerabilityof patients. There is sometimes a blind spot in moral thinkingwith regard to the vulnerable and weak. The blind spot manifestsitself in a certain pattern of suspicion that seems natural whensomething goes wrong and the weak or vulnerable suffer as aresult. The presumption is that when the weak or vulnerablesuffer in a transaction in which the strong are also involved, theweak are innocent, and the strong are probably responsible orshould be foremost in offering to compensate the weak orvulnerable for what has happened. But there are many counter-examples to this way of thinking. The vulnerability of patientsdoes not mean that they cannot be negligent and contributesignificantly to bad health outcomes, even though it is mucheasier for a negligent or incompetent doctor to do much moreharm. Relative vulnerability does not confer inability to do wrong.

The analogy introduced earlier may help in this connection.Among road users, pedestrians are much more vulnerable, otherthings being equal, than car drivers, lorry drivers and evencyclists. Cyclists are a danger to pedestrians, but are vulnerable todrivers of heavier vehicles. These facts are reflected in the legalqualifying conditions for being a driver, and in certain rules ofthe road. You need a driver's license to operate a car, and aspecial licence to drive heavy lorries. Cars have to stop atpedestrian crossings, and they have to give cyclists a wide berth.These rules are justified by the relative vulnerability ofpedestrians and cyclists. But it is not as if pedestrians and cyclists± the most vulnerable road users of all ± are exempted fromfollowing the rules of the road, or as if they can't break them. It isjust as possible for a drunk on foot to cross the road recklessly asfor a drunk driver to turn into a road recklessly. Vulnerability,then, does not confer automatic innocence of wrongdoing onthe vulnerable.

The vulnerability of patients does not confer innocence onthem either. Nor does the autonomy of vulnerable peopleinsulate them from responsibility for the consequences ofdecisions made jointly with doctors. This is indirectlyacknowledged even by the conception of autonomy inmainstream medical ethics. The mainstream conception callsfor the full consultation of patients by doctors in clinicaldecisions, and for the participation in clinical decision-makingof patient advocates, and disinterested third parties ± people whocan make patients' views better heard and respected and who canprevent their being paternalistically overridden. The ideal thatthese arrangements apparently attempt to capture is that of a



genuine partnership between clinician and patient in a course oftreatment. The other side of the coin of treatment decisionsreached in partnership, however, is joint responsibility for theoutcomes, including cases where things go badly wholly as aresult of these decisions, and the patient turns out to be harmedor disappointed. But, as we have already suggested, in actual caseswhere things go badly, the solidarity in decision-making is likelyto break down: the fact that it is the patient and not the doctorwho feels the bad effects, and the doctor and not the patient whoemerges intact, seems to undo the partnership. A presumption ofnegligence can grow up that apparently frees the patient to sue,even when she is responsible for making the decisions that led tothings going badly.

Perhaps the breakdown in solidarity is justified, because thepatient and doctor can rarely really be equals in the decision-making process in the first place ± it may be too much of an ideal.But can it always be so much of an ideal that the patient nevercarries any responsibility? Autonomy without responsibility is notautonomy, even where the autonomy is a vulnerable patient'sautonomy. There may be an obligation on patients in certaincases to live with certain decisions that leave them badly off.

PATIENTS AND GENERAL ETHICS: RESPECT FOR PERSONSAND DUTIES OF CITIZENS

Respect for persons

Some of the duties which patients have to their doctors (andother health care workers) come from a general obligation uponeveryone to respect other people. Several examples of badpatient behaviour serve to illustrate:

● Whilst waiting for treatment in accident and emergency apatient complains constantly and abusively to the nurses andreception staff about having to wait his turn. When he sees thedoctor he begins to swear again and finally punches thedoctor.

● In order to get an earlier hospital appointment, a patientexaggerates her symptoms of abdominal pain to her GP.

● Following an emergency consultation with her GP on aSunday, a patient promises to get her repeat prescription ingood time in future. She doesn't and has to be seen as an extraat the end of a busy day.

● A patient decides not to keep a hospital out-patientappointment because a friend calls by unexpectedly.



In all these cases, the wrongdoing is the same and is of a kinddealt with in general ethics: the patient fails to show the respectfor persons that is due to anyone, not just health careprofessionals. Anyone who swears at others or hits them withoutprovocation is doing something wrong, regardless of the role ofthe person sworn at or attacked. And the basis of the wrong isdisrespect. It is the same for anyone who breaks a promise, wastesanother's time, or tells partial truths to get their own way. Ofcourse there may be something particularly bad about abusivebehaviour directed at people who are trying to give help, as in thefirst example, but even there part of the wrong is the wrong ofdisrespect.

Competent patients have a responsibility to look after their own health

Patients not only have obligations to health care professionalsthat flow from an obligation to respect others. They haveobligations to themselves to promote their own health. Or so weshall argue. These obligations in their turn ground obligations toseek medical advice and listen to it. Patients have furtherobligations to take publicly-provided medical advice if they arecitizens of welfare states. We shall come to this later on.

We begin, however, with obligations of patients to themselves.Medical ethicists who otherwise agree about the importance ofautonomy are sceptical about responsibilities to one's self,especially when this responsibility is understood as preservingand promoting one's own health. But this responsibility canreadily be justified within a Kantian ethical framework. Withinthis framework moral mistreatment is often connected with afailure fully to recognise humanity or personhood. And for Kantthis was as much a possibility in the treatment of oneself as thetreatment of others. To take an example from outside medicalethics, the Kantian framework readily explains the intuition thatservility is wrong, and wrong in a way related to the wrong ofenslavement. Enslaving another is the strongest denial possible oftheir autonomy, of their capacity to make choices for themselves.Servility is wrong, because it denies or undercuts the same thingas enslavement ± a person's autonomy. The fact that the persondoing the undercutting is oneself does not make it all right.4 Nowsince Kant regarded autonomy as a possibility even in a beingwho is physically incapacitated, there is no direct argument in

4 For an extended discussion of servility from a Kantian perspective, see T.Hill. 1991. Autonomy and Self-Respect. Cambridge. Cambridge University Press.



Kant's own terms from the need to preserve autonomy to theneed to preserve one's health and avoid incapacitation.Nevertheless, there is a perfectly clear sense in which peoplewho connive in the loss of their physical capacity or who damagetheir health are reducing the means they have to accomplishtheir ends, and this counts for Kant as a piece of practicalirrationality that morality must recognise. Kant himself ascribedautonomy to a noumenal agent not identifiable with the humanbeing. For Kantians other than Kant, who may want to think ofautonomy as a property primarily of naturally realised agents, likeembodied human beings, a deliberate reduction in physicalcapacity might be regarded as a direct assault on autonomy itself.Kant, for his part, recognises moral duties to oneself as a natural(or animal) being:

There are impulses of nature having to do with man'sanimality. Through them nature aims at a) his self-preservation, b) the preservation of the species, and c) thepreservation of his capacity to enjoy life, though still on theanimal level only. The vices that are here opposed to man'sduty to himself are murdering himself, the unnatural use of hissexual inclination, and such excessive consumption of food and drinkas weakens his capacity for making purposive use of hispowers.5

Kant goes on to define a sense of `mutilation' according to whichany wilful reduction of one's physical powers counts as the wrongof self-mutilation.6 In this sense it might count as mutilation tocontinue in a life-style that one knows (after being given medicaladvice) will severely damage one's health. Although this is`mutilation' in an unusual sense, there seems no strain in sayingthat reducing one's powers gratuitously is a way of harmingoneself for no good reason, and that harming oneself for nogood reason is wrong.

We are not claiming that there can be no conflict betweenavoiding damage to one's health and discharging other duties.Asserting that autonomous individuals have duties not toincapacitate themselves or reduce their capacities gratuitously iscompatible with accepting that sometimes individuals have tomake hard choices that require them to make personal sacrifices

5 I. Kant. 1991. (1797) Metaphysics of Morals. M. Gregor, trans. Cambridge.Cambridge University Press. Akademie edition, vol. 6: 420.

6 Ibid. p. 421. Kant appears to mean a permanent reduction of one'spowers.



for the good of others. A mother, for instance, may neglect herown health because she lacks the resources both to promote herown health and that of her children. In a case such as this, theharm to self might be taken as justified. Asserting that individualshave duties to themselves may also be compatible with refusingtreatment or ignoring medical advice in cases where there is littleevidence of success of treatment or where there is a genuineclash of values ± such as occurs when attempting to balancequantity and quality of life in terminal illnesses. But these casesare likely to be exceptional. In many more cases, patients harmtheir own health when the welfare of others is not at stake andwhere doing so is unreasonable.7

In utilitarianism, it is the collective welfare that morally justifiesaction or inaction, and health is an important component ofwelfare. Public health counts for more than individual healthwhere there is a conflict between the two, but often it willpromote the public health to do what one can to stay healthyoneself. And this can mean following good medical advice.Utilitarianism would also justify certain exceptions to this rule,similar to those outlined for Kantian ethics. Utilitarianism maypermit us to sacrifice our own health if by so doing, greaterhealth for others is achieved. Likewise, utilitarianism may permitus to refuse a procedure where there is little evidence that it willsucceed, or where there was some genuine disagreement betweendoctor and patient about whether the good of health translatesbest into longevity or quality of life. But typically bothutilitarianism and Kantianism will argue morally for notdamaging one's health and for undoing habits or ways of lifethat are damaging.

Patients as citizens

In welfare states, discussion about the use of limited resourcesextends naturally to a consideration of whether citizens havesome sort of moral obligation, other things being equal, to limittheir demands on these resources. If the answer is `Yes', thenthere may be a civic obligation to follow preventive healthmeasures recommended by one's doctor. If one is advised to stopsmoking or over-eating, and one disregards that advice, so that

7 The law in the UK conspires to support the mainstream medical ethicsposition by claiming that patients have the right to refuse treatment forirrational reasons, as well as no reason at all (Sidway v Bethlem RHG [1985] 1All ER 643).



one's condition deteriorates to the point that expensivetreatment is required to keep one alive, one may be doingsomething doubly wrong ± breaking obligations to oneself andbreaking civic obligations not to use public resourcesunnecessarily.

Patients may attempt to justify their negligence by saying thatthe taxes they pay on cigarettes or their contributions to nationalinsurance mean that they have paid for the treatment they needas the result of ignoring medical advice. This argument is oftenused in an unsophisticated way, for it overlooks all the tax-financed benefits that go beyond health care that people enjoy.But even if all patients who ignored medical advice were netcontributors to the welfare state, the argument would still beflawed. The justification for the welfare state is not only that ofegoism (I pay my taxes so that I will benefit if the need arises). Itis also justified by the belief that a decent society ought to usewhat resources it can to support the weakest and the poorest. Itruns counter to this latter justification for people to assess theirobligations solely in terms of whether they pay in more than theyget out. The relevant question is whether the neediest get all theymight.

How important is the fact that those who ignore medicaladvice and make themselves ill voluntarily put themselves in needof a scarce good? In many welfare states penalties operate forthose citizens who become voluntarily homeless or voluntarilyunemployed. Sometimes they become ineligible for housing orunemployment benefits. Yet, if doctors were required to operatethe same kind of penalty system when allocating health care ±namely to withhold medical care from those who became illthrough their own choices ± this would be deemed unethicalfrom a medical ethics perspective.8 There are good reasons whythe distribution of medical resources cannot be treated in everyrespect like the distribution of housing and unemploymentinsurance. For one thing it would be difficult to prove in all casesthat neglect was the source of ill-health. The more we understandabout genetics, the more we know that environmental factors areonly partly to blame for ill-health, and it would be wrong topenalise an individual for her genes since her genetic make-up isbeyond her control. It is also difficult to prove that an individual

8 For a discussion of the general issues in the spirit of tolerance for patientswhose lifestyles are `unhealthy', see I. de Beaufort. 1999. IndividualResponsibility for Health. In R. Bennett and C. Erin, eds. HIV and AIDS:Testing, Screening and Confidentiality. Oxford. Oxford University Press: 107±124.



knowingly endangered her health. This might be offered as apartial defence for smokers, for instance, who might argue that atthe time they started smoking the harmful effects were unknown,or that they were non-autonomous minors who succumbed topeer pressure. Moreover, the penalty that may be paid by thosewho have contributed to their own ill-health could be out ofproportion to the wrongdoing ± a delay in medical treatmentmay not just cause short-term inconvenience or straightenedcircumstances. None of this, however, justifies people incontributing knowingly to a deterioration in their health andexpecting everyone else to pay the bill.

In short, there are duties not to use health services casually.And the duties become more unbreakable the closer the servicesabused get to being acute medical services. Someone whoindulges their hypochondria by frequent visits to the GP, orwho summons an ambulance after getting a sunburn; someonewho knowingly presents himself at an emergency room withnothing more than severe indigestion; or who calls out a doctorbecause he needs a repeat prescription that could be filled inoffice hours next day; all of these patients do something morallywrong, wrong primarily because they take away time andresources better spent on more urgent cases. The obligationsthat these patients fail to respect or make good are theirobligations as citizens to the health care system and otherpatients.9

The counselling relationship

Doctor-patient relationships in general practice are certainlychanging. Patients register with the whole practice, rather thanwith a particular doctor, and which doctor they see may dependcrucially on availability in an appointment system. Nonetheless,perhaps the greatest continuity of care is still provided in generalpractice. For even if the entire history of the patient is notpersonally known to a general practitioner (GP), the GP notesgenerally offer by the far the most complete patient history.Suppose that this history is one of gradually declining health,reasonably thought by the GP to be due to over-eating, smoking,

9 Sorell, 1997, op. cit. note 1, notes that these obligations do not exist onlywithin a public health care system open to everyone, though clearly such ahealth care system is of a kind it is easiest to misuse or overuse. The obligationsalso exist where the health care system is small and private and open only to thefew. The fact that the system is small and exclusive may make its overuse lesslikely; it does not make the obligation not to overuse it otiose or unintelligible.



drinking to excess, or something else to do with lifestyle. Supposethat the patient is becoming obese and is in danger of developingdiabetes, for example. He is advised to diet, but ignores theadvice. Or suppose that a patient is sent for tests to establishwhether or not he is suffering from bowel cancer, and is tooembarrassed to go. Let us assume that there is no doubt in eitherthe patient's or the health care practitioner's mind that thecourse of action recommended makes sense. There is simply afailure on the patient's part to follow through. Is this anothercase of patient wrong-doing? Yes, because not only does heknowingly aggravate his own condition, doing himself harm, buthe unreasonably refuses to play by the rules of situations in whichpeople seek and are given medical advice. These rules can betaken to assume that both patient and doctor have a serious stakein some sort of health gain for the patient, and that so long as themeans of achieving the gain seem reasonable to both parties, thepatient will fall in with them. This is another duty that the patienthas that flows from general ethics. This duty is not just anotherversion of the duty to self ± though it could be ± it is also a dutyowed to the doctor. This duty may have something in commonwith a duty it is arguable people have in counselling relationshipsin general, at least where there is no doubt that the counsellorputs the best interests of the advice-seeker foremost. If the advice-seeker asks for advice, then he should be prepared to listenseriously to it. That is why it is wrong, and not just imprudent, forsomeone who asks for advice to dismiss it angrily when he doesnot like what he hears ± because he has asked for advice and note.g. flattery. The advisee should take what he hears seriously ifthere is no reason to think it is not offered in good faith. And ifhe genuinely agrees with the advice, and is not just saying hedoes, he should ± morally should ± follow through with it, otherthings being equal.

Perhaps only the listening is strictly owed to the counsellor inthe counselling situation, while the following through is owed tooneself. But in the medical situation it may be different. Thesame GP who gives the advice that is apparently accepted and notacted upon may have to pick up the pieces when, as a result, thecondition of the patient worsens later. And picking up the piecesmay consist in trying to get a patient to take advice a second orthird or fourth time. The worse the condition becomes, the morethe duty of care limits the room for manoeuvre of the doctor. Hebecomes a sort of captive helper. And so the duty of the patientmay be a duty not to conspire in bringing this captivity about. Inthis sense, the duty that one has as an advisee in a doctor-patient



relationship begins in general ethics, and, as a result of theethical constraints upon doctors, ends up in medical ethics.

PATIENTS' DUTIES TO DOCTORS AS CAPTIVE HELPERS

The captivity of doctors works on two levels: on the one hand,individual doctors are only exceptionally allowed to break off arelationship with a patient; on the other hand, even if a particulardoctor-patient relationship proves impossible or is brought to anend, the profession as a whole will continue to provide care forthe patient.

Ought doctors be captive helpers?

One question about the captivity is whether it is fair; another iswhether it protects an interest so vital that the one-sidedness isacceptable. One reason why it may be fair for doctors toguarantee to pick up the pieces for patients is that the patientsare the vulnerable party in a relationship that can only ideallyever be an equal one. But to suggest that doctors have topersevere with patients simply because they are, as a group,vulnerable, seems to suggest either a very paternalistic view ±patients are never to be given true autonomy that would holdthem accountable for their actions ± or else it suggests that thevulnerability of patients is sufficient to ensure that they are nevertruly autonomous, and are not therefore moral agents withresponsibilities for their health. We have already argued that therelative vulnerability of patients is not a good reason to assumethat they cannot also have responsibilities to doctors, or to othersjointly with doctors. Further, to suggest that no patient is actuallyautonomous is incompatible with the emphasis that mainstreammedical ethics has placed on autonomy. Clearly, some patientsare not autonomous ± but we take it that these patients arealready catered for in mainstream medical ethics, which requiresdoctors to act in the best interests of patients who are brain-damaged, mentally ill, unconscious, infants etc. We alsoacknowledge that some patients face very restricted life choicesor have a genetic pre-disposition for disease. But, theseexceptions aside, patients who are generally able to consent orrefuse consent to medical treatment or to follow medical adviceare presumed by mainstream medical ethics to be autonomous.10

10 At this point we are assuming that mainstream medical ethics is correct toequate competence and autonomy. We would argue that this should not always



If genuinely autonomous, they must be expected to takeresponsibility for the decisions that they make ± includingresponsibility for any resulting ill health, and responsibility forthe long-term breakdown of their relationship with their doctorand its eventual cessation. This argument suggests that captivedoctors should be freed.

Another objection to our claim about the unfairness ofdoctors' captivity is that doctors enter the profession knowingthat there will be difficult patients, including patients whorepeatedly ignore important medical advice. It is a problem thatgoes with the territory; so it cannot be counted a kind ofunfairness. Although this objection is natural enough, it isquestion-begging. The fact that a kind of behaviour is to beexpected is not justification for the behaviour. Until men werecriticised for leaving all domestic labour and childcare to theirwives, women thinking of getting married could predict that theirhusbands would leave such things to them. But this does notjustify those unenlightened husbands in refusing to share theburdens, and it does not remove the impression that womenintending to get married had a certain unfair division of labourto look forward to.

We now turn to the best interests of patients. There areperhaps two ways of justifying doctors' captivity on the basis ofthe interests of patients: it might be justified on the grounds thatwe are better off when this obligation is generally observed, evenif it is unfair in some individual cases. Or it might be justified as aprotection for patients against unwarranted discrimination. Letus begin with the possibility that captivity leaves patients betteroff. Though it has a different basis, the captivity of doctors mightbe likened to the captivity of friends and relations of dependentadults. Adults are generally expected to fend for themselves andrun their lives ± mishaps and all ± unaided. Sometimes, however,they get into trouble and turn for support and various kinds ofassistance to their nearest and dearest. The nearest and dearestare under some sort of obligation to pick up the pieces if themishaps are serious, even if the person who suffers them gets intotrouble persistently. They are under an obligation because

be the case ± and Gillick competent children might be a case in point. TheGillick case in the UK established that children under the age of 16 can giveconsent, provided that they are sufficiently mature and intelligent tounderstand the medical intervention in question and its implications. However,according to other UK case law, children under 16 do not have the right torefuse medical intervention and their parents can over-rule any refusal ofconsent, by consenting on their behalf.



friendship involves loyalty, and therefore a willingness to helpeven when it is difficult or inconvenient to do so, and becausebelonging to a family is often supposed to be a necessary last lineof defence against a sometimes hostile world of strangers. Thisdefence is more urgently needed the younger one is, but it doesnot disappear when one grows up, and very late adulthood mayreintroduce it in a powerful form. So the devotion of friends andrelations can be morally necessary, even if the people whodepend on it do not always deserve it. The doctor/patientrelationship may be like this kind of relationship. It is generallybetter for doctors to be ± like the friends and relatives ± captivehelpers because it is an important aspect of doctoring thatpatients in need are not abandoned, even when some of thesepatients are undeserving in the sense that they perpetually putthemselves in need of care.

The captivity of doctors may also be justified in another way,for there is a danger that unjustified discrimination may occur ifdoctors are required to become unblinded to the behaviour ofpatients. Unblinding doctors would mean that they would have tojudge whether patients should be left untreated as a consequenceof the autonomous decisions they have made. This raises severalconcerns. Doctors are only human and humans are fallible inmany different ways. Some are racist, ageist or sexist etc. Suchdoctors might all too readily act on questionable judgementsabout patients' behaviour if they were free to break off theirrelationship with patients too easily. Likewise, some doctorsmight be bad judges of how responsible or irresponsible a patienthad been. All of these are reasons why it is better, on balance, totolerate the captivity of doctors.

What duties for patients flow from benefiting from a captive relationship?

The analogy between doctors' captivity and the captivity offriends and relations extends to the limits on this captivity. Forthere are limits. The devotion of friends and relations can bestrained to breaking point, and the people who make use of it areunder some obligation to try and limit their calls on it and returnto the adult norm of looking after themselves as far as possible.The captivity of the nearest and dearest is not then anunconditional and permanent captivity. Neither should thecaptivity of doctors be: as adults who can be expected to regainor acquire their independence and keep to a minimum theburdens they avoidably create, autonomous patients are under anobligation to do what they can to limit the captivity of doctors.



The upshot of this is that in medical ethics, patients should havean obligation to follow reasonable medical advice ± especially thekind of medical advice we referred to earlier, namely that withwhich the patient actually agrees before something like weaknessof will sets in. Doctors, like the friends and relations, have anobligation to persevere in the hope that patients will eventuallybe able to achieve or return to the norm of taking proper care oftheir own health. But patients also have an obligation to enabledoctors whose sound advice is ignored to withdraw from thisobligation. The main duty of patients who need care fromdoctors they keep captive is to do their part in reducing theirneed for medical care and in co-operating with doctors so thatdoctors are willing rather than captive helpers in the doctor-patient relationship.

WHAT CAN DOCTORS DO WHEN PATIENTS DO NOT ACTRESPONSIBLY?

If patients also have duties in medical ethics, then presumablydoctors should have some recourse when patients fail in theseduties, just as patients do when doctors fail. The difficulty here isthat, in releasing themselves from the role of captive helper,doctors abandon patients to their fate, and there will inevitablybe hard cases.

Consider a patient on dialysis who ignores sound advice tolimit his fluid intake. This is necessary because patients on dialysistend to retain fluid that is then removed as part of the dialysisprocess. Only so much fluid can be safely removed in a singledialysis session ± removing too much can lead to heart failure.Patients who do not comply may, therefore, have to be givenadditional dialysis sessions in order to prevent this. But dialysis isoften in short supply, and providing additional sessions for onepatient inevitably means that other patients will receive nodialysis at all.

Let us suppose that the patient has no good reason for hisfailure to comply with the advice to limit his fluid intake; he justkeeps giving into the temptation to drink. What action could thedoctors reasonably take against this patient? One possibility isthat they could issue an ultimatum: since he is persistently notcomplying with the recommendations for fluid intake, they willno longer be providing him with additional sessions. They wouldhave to explain that the consequences of continuing to abusefluids without the additional sessions would be discomfort andeventually heart failure. Such an ultimatum would force the



patient to accept the consequences of his autonomousbehaviour. In effect, the patient would be required to act asthe responsible adult he is. Arguably this action shows greaterrespect for his autonomy then does providing the additionalsessions. But what if, after several months of adult behaviour, theresolve of our patient begins to weaken, his fluid retentiongradually worsens and he is eventually admitted to accident andemergency with heart failure for which immediate dialysis is theobvious solution? Under these circumstances would it be ethicalfor the doctors to continue to refuse to give additional dialysis? Inthis case, we have to conclude that it would not. In an acute, life-threatening situation, the safety net of captivity would returnbecause it would be wrong not to save a life, even oneendangered through stupidity or weakness of will.

This answer suggests that doctors ultimately remain captive. Ifthis is so, are there any measures that doctors can take to freethemselves from captivity? Perhaps not. But in this case doctorsmight continue to refuse more than routine dialysis once thecrisis has past. This may in time lead to another acute admission(though it is to be hoped that the patient may be shaken intocompliance by his brush with death), when yet again emergencydialysis will be provided. However, it would not be wrong of thedoctors to stick to this cycle even if it damages the patient'shealth in the long run. As a result of his behaviour, the patient'slongevity and quality of life will inevitably be affected and fromthis there is no one to rescue him but himself.

Finally, let us look at another, less unusual, example ± that ofthe patient who is persistently and unjustifiably very rude orviolent toward his GP. Clearly, the GP may remove this patientfrom her list: medical ethics does not require an individualdoctor to be captive in the face of physical or verbal abuse. Butsuppose the patient repeats this behaviour with several other GPs.Here it is not the captivity of the individual doctor that is beingtested, but the captivity of the profession as a whole. What can bedone in this case to free the profession from captivity? Onesolution might be that the patient be denied access to any kind ofone-to-one relationship with any doctor. Instead he would onlybe given emergency treatment in an accident and emergencyunit, with a policeman or security guard present. Certainly theprofession can be unblinded to the behaviour of this individualso that nothing more than the basic minimum was given and hewould be excluded from minor or preventative care/advice. Insome sense the profession remains captive ± the patient is neverabandoned ± but he is being denied any meaningful doctor/



patient relationships as a result of his very unreasonablebehaviour.

CONCLUSION

Autonomous patients do have duties ± most of which are left outof mainstream medical ethics. Some of these duties flow from theobligations all persons have to each other; others are theresponsibilities citizens have in a welfare state. More specifically,patients have duties corresponding to those that render doctorscaptive helpers. Patients have to ± morally have to ± do their bestto ensure that they minimise this captivity and enable doctors tobe willing helpers. Although doctors remain captive in the face ofacute or life-threatening illness, it is not unethical for doctors tofree themselves from this captivity in cases that fall short of life ordeath.

Heather DraperDepartment of Primary Care and General PracticeCentre for Biomedical EthicsPrimary Care BuildingThe Medical SchoolUniversity of BirminghamEdgbaston, Birmingham B15 [email protected]

Tom SorellDepartment of PhilosophyUniversity of EssexWivenhoe ParkColchester C04 [email protected]



Patients’ Responsibilities in Medical Ethics

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