Scientific Contribution

Respect for persons, autonomy and palliative care

Simon WoodsPolicy Ethics and Life Sciences Research Institute, University of Newcastle, Times Square, NE1 4EP, UK (E-mail:

Simon.woods@ncl.ac.uk)

Abstract. This paper explores some of the values that underpin health care and how these relate morespecifically to the values and ethics of palliative care. The paper focuses on the concept of autonomybecause autonomy has emerged as a foundational concept in contemporary health care ethics and becausethis is an opportunity to scratch the surface of this concept in order to reveal something of its complexity, anecessary precaution when applying the concept to the context of palliative care. The paper begins with atheoretical discussion of autonomy exploring an aspect of its contemporary meaning and relevance tohealth care. The second part of the paper focuses more closely on how the principle of respect forautonomy can be applied in the context of palliative care. In this section an ethical framework is employedto explore a practical application of this principle within a broader context of respect for persons.

Key words: autonomy, best interests, palliative care, respect for persons

Introduction

Autonomy literally means self-governing or self-legislation, but the modern accounts of autonomyhave moved on from this context in ancient Greekpolitics. Human history since that time has wit-nessed a repeated endeavour to define what it is tobe a morally significant entity – a person. Anaspect of the contemporary meanings of autonomyis therefore interwoven with a modern understand-ing of the ‘self’ and individuality which, to anextent, have become moral cornerstones in con-temporary Western thinking. The modern sense ofthe moral status of the individual has been hardwon, through a gradual pairing off of the individ-ual from the various established hierarchies ofauthority, clan and class, church and state. Thisprocess can be understood as the evolution of aboundary of permissible intervention between oneperson and another. Health care and the relation-ship between patient and health professional inparticular, is one arena in which the individual hasemerged from a struggle with an establishedauthority to be recognised as a moral entity. InWestern medicine at least there is now a consensuson an ethic of patient autonomy in place of medicalpaternalism. Clearly the full picture of whereautonomy sits within an account of the person ismore complex than this brief summary allows.

Thinking about the moral status of othersnecessarily raises issues concerning one’s ownmoral status and rights, but obligations and dutiesalso. A further tier of complexity is added when weconsider the relationship between individuals andthe spectrum of contexts in which such relation-ships occur. This paper is concerned with theparticular context of palliative care but beforeaddressing this context I want to say somethingmore general about the evolution, and continuingevolution, of the concept of autonomy.

The modern self is a complex construct, closelytied to concepts of liberty and freedom, identityand individualism. Central to this notion of self isautonomy, and one of the first modern thinkers toaddress autonomy was Kant (1786), who sawfreedom as a necessary condition for moral action.In Kant’s view an agent could not act morallyunless they were freely choosing to do what is right.The autonomy of the individual is also for Kantthe ground for the moral equivalence of individualsso that my claim to act autonomously must bepremised upon the recognition of your claim toautonomy. Therefore a community of autonomousindividuals must comply with a principle of mutualrespect. This aspect of autonomy became evenmore significant in the context of the early liberalcontribution to our understanding of autonomy.For Liberals like Mill (1859) each individual, and

Medicine, Health Care and Philosophy (2005) 8:243–253 � Springer 2005

DOI 10.1007/s11019-005-2506-y

by this is meant something like each competentadult, is sovereign to himself. One of the influencesof the liberal position has been to engrain aprinciple of negative freedom into the concept ofautonomy. Negative freedom means, more gener-ally, a freedom from interference. The exception tothis principle is where one person’s actions pose athreat to the safety and security of others. Thisprinciple has become universally recognised and isrepresented, in one form or another, in thelegislature of most countries. In the context ofhealth care specifically this principle has becomethe foundation for the clinical relationship, namelythat such a relationship is founded upon patientconsent.

But this account is rather too black and white,particularly as liberals offer a ‘positive’ and hencemore challenging account of self-determination, sowe must take a little more time to unpack themeaning of autonomy. What I am concerned withhere is how the concept of respect for autonomyshould be understood, both generally, and in thespecific context of palliative care. So far I havediscussed autonomy as a moral principle, theprinciple of respect for autonomy, but autonomyis essentially a description of a capacity, thecapacity to think and reflect, and decide foroneself. In order to understand the moral principlewe must consider the moves that take us from anunderstanding of this capacity to a commitment toa principle of respect for such a capacity.

Following on from my initial account of auton-omy, autonomy understood as a capacity, influ-ences our understanding of the moral principle ofrespect for autonomy in the sense that it implies aright to choose for oneself. Freedom to exercisesuch a right implies further that one can legiti-mately claim certain things for oneself and that oneis free to pursue those claims. But still more needsto be said before this account of autonomy isadequate. Understanding autonomy is importantto our understanding of how we treat people withrespect and is therefore crucial to our understand-ing of moral judgements. For example should wedistinguish between the different kinds of choice aperson might make in terms of understanding ourobligation to respect such choices? My two year-old daughter likes cake and protests her preferencefor cake over vegetables at every meal, but it seemsreasonable and indeed right to balance her dietwith both vegetables and, at least a little, cake, forwhilst she may be an authority on what she likesshe is by no means an authority on what is goodfor her. One could go further and say that it wouldbe doing her a serious wrong not to see her through

childhood well nourished. Moreover a failure toeducate her palate so that she finds a varied dietacceptable would deny her the sorts of healthypractises that are likely to sustain her as an adult.So on this account a certain level of interference inthe life of another is consistent with respect for thatperson because in this example such interferencecan be seen as instrumental to the development ofthat person. Of course it does seem a significantfact that my daughter is only two years old, wouldthe same be true if she were six or twelve or twentyyears old? Now my feelings as a father mightincline me to conclude that I have just the samereasons to care for my daughter whether she is twoor twenty years old but reflections on autonomyand the moral status of the person might enable meto distinguish a difference in the degree of justifi-cation I have for intervening in the life of a childover an adult. This conclusion however also raisessome interesting questions about the nature androle of autonomy. Is autonomy a good in itself, oris autonomy valued because it is instrumental tosome other valued end or ends? What are weshowing respect for when we respect a person’sautonomy? These are important issues to which Ishall return.

Autonomy and the ‘good’ life

The high status ascribed to autonomy is in partrelated to the way in which ‘we’, that is, within acertain Western culture, have come to evaluate lifein general. A corollary of advancing the concept ofthe person as an autonomous agent has been anerosion in status of the traditional sources ofauthority as to the nature and purpose of the‘good’ life. A contemporary view, albeit a con-tested view, of autonomy suggests that becausethere can be no authoritative guidance from theChurch or Monarch or State individuals should beregarded as free to map their own course, thusgiving credence to the idea that autonomy is ofinstrumental value.

By ‘evaluation’ of life I mean the ways in whichwe judge life to be a good life. Theories of the‘good’ life have a long tradition in philosophyalthough the philosophical accounts are not so farremoved from some common intuitions aboutwhat constitutes the good life from the personalperspective. I now turn to exploring some theoriesof the good life as a means of furthering thediscussion of autonomy.

Subjective accounts of the good life have astrong intuitive and philosophical appeal. Bysubjective I mean forms of evaluation, which focus

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on the quality of a person’s experiences, theirfeelings of pleasure or satisfaction when their life isgoing well.1 The intuitive appeal of the subjectiveview is that we all know from our own experienceswhat we enjoy or take satisfaction in. In thecontext of palliative care it is uncontroversial totake at face value what people say about their ownexperiences and preferences, hence the notion of apatient centred approach to care and the premiseof accepting as authoritative what patients sayabout their pain and comfort.

In more general terms, subjective theories couldbe taken to imply a greater weight for a principle ofrespect for autonomy because in respecting auton-omy an individual is allowed the freedom toexercise their authority with regard to their owngood life. This approach is compatible with abroadly liberal moral framework, a frameworkthat places a high value on the freedom frominterference. Because such approaches are gener-ally sceptical of any single conception of the goodlife they are very tolerant of the different lives thatpeople choose to live. Along with the liberalinclination to accept one or other of the subjectivetheories of the good life comes a greater emphasison the importance of autonomy, since, if there isno authoritative theory of the good life, peopleshould be free to choose their own way of living. Ibelieve this to be a very restricted view of howautonomy fits into a complex shared morality.

An example of this narrow view is evident if wetake autonomy to be instrumental to certainsubjective goals only. Although we may be inclinedto follow the subjective accounts of the good lifethere are also some counterintuitive aspects of suchtheories that suggest the subjective accounts are atbest incomplete. One form of subjective theory isthat the good life is a life entirely devoted to thepursuit of pleasurable experiences. Since I am anauthority on what I take pleasure in there is goodreason to claim a right to non-interference byothers. Therefore I should be left to pursue the sortof life that will maximise my pleasure. When westart to spell out subjective theories in this waythen they soon appear to be quite thin accounts ofwhat a good life might be. For example, the life ofthe crude pleasure-seeker runs in the face of ourfrequent postponement, denial even, of immediatepleasures for the sake of some more important goalor goals. Of course the rational pleasure-seekermay also postpone immediate pleasures if doing sobrings greater pleasure in the future, but the pointhere is not the act of postponement per se but whatthe act of postponement is indicative of. The verynotion of a rational pleasure seeker suggests the

value of rationality to a life in which we maketrade-offs between different kinds of pleasure andbetween different possible life plans, suggestingother, arguably more important components thatcannot be reasonably described as ‘pleasures’. If wetake such rational deliberation as part of what wemean by autonomy then it seems reasonable tosuggest that autonomy is not simply instrumentalbut also constitutive of a good life.

Reflecting on the nature of the good life raisesstill further issues, for example, if we ask whetherthe individual is in fact an authority with regard totheir own good. This seems problematic even if werestrict the forms of good to pleasure alone. Wecan distinguish for example between what it feelslike to enjoy a particular experience and knowledgeabout the sorts of thing that we might enjoy.Whilst the former may be private and unique to methe latter is not.

Imagine that I have never tried tapenade sauce,I have heard others describe the sauce and I haveadopted the inclination that I would not like it evenif I tried it. However my wife tells me that sheknows I will enjoy it even though it is somethingshe does not care for herself. I try the sauce and Ifind that she is right, I do enjoy the sauce. The factthat someone else knows better than I do myselfwhat will give me pleasure suggests the possibilitythat this may be true of other aspects of my life.This in turn might imply that the good life isconsistent with having one’s life directed by othersrather than directing one’s own life. This iscertainly feasible in the context of health carewhere a doctor is much more likely to know, or atleast accurately predict what is best for me in termsof my health care needs than I am myself. Thisthought is also counterintuitive given that a basicconception of autonomy is about having self-control rather than being under the control ofothers. The mere possibility that others may knowbetter than me what is good for me forces us toconsider what the proper influence of the otherover me ought to be.

Consider a different example. Jack’s life hasbecome overshadowed by pain due to an advancedcancer. From Jack’s perspective he believes thathaving less pain would be a much better life thanhis current experience but he also believes that theonly means of relieving his pain is in death. Jacktherefore asks to be killed because although hewould prefer to continue living with no or muchreduced pain he believes that the only effective wayof ending his pain is to end his life. Of course weare bound to accept that Jack is an authority on hispain but not necessarily an authority on what will

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bring about the state of affairs he desires. Whatwill bring about this desired state of affairs is aquestion that is open to independent enquiry, afterall Jack’s own thoughts on the matter are toobleakly contrasted and he seems closed to thepossibilities further treatment may offer him. Ajustified form of intervention in this case would beto at least persuade Jack to try different treatmentsas a less drastic means of achieving his goal.

This example says something about how we canbegin to understand what it is to show respect forothers. It seems reasonable to take steps topersuade Jack to try different means of controllinghis pain given that there is a shared view of theobjective, namely, being pain free. For Jack, beingkilled is merely instrumental to being pain free evenif it would be self-defeating in terms of his interestin continuing to live. However, imagine a differentscenario in which Jack regards death as hisobjective. In this scenario, even if Jack’s paincould be controlled in a non-fatal way it would notbe true, no matter how we described the situationthat Jack’s pain-free existence was a good life forJack if what he wanted was an end to his life.

A further example. Suppose I find myself in thesituation where there is equal reason to be scepticalabout my judgement about my good and anotherperson’s judgement about my good. What reason isthere to give weight to my judgement over theirs?We can only argue that I should be allowed tofollow my own judgement if we accept there issome independent value in my directing my ownlife. The point of this example is to show in a fairlysimple way that what justifies the appropriatenessof intervention or lack of intervention in the livesof others hinges crucially on the acceptance thatthere is intrinsic value in allowing a person to livetheir own life. In so far as a person is capable ofmaking their own choices, and indeed their ownmistakes, then there is added value in allowingthem to do so. Of course in the real world we rarelyfind ourselves in such an impasse; there alwaysseem to be reasons favouring one view overanother, even if the ultimate reason is simply aconviction in one’s own view. A thoroughgoingaccount of the principle of respect for autonomymust consider the ways in which we weigh suchreasons, either as justifications for self-determina-tion, or as reasons for intervening in the lives ofothers. In the context of health care, challengingsomeone to reconsider his or her decision, to takeinto account expert advice or try alternativeoptions, may be an important way of demonstrat-ing that we have respect for that person by showingwe have not given up on that person.

Our own view of the good life is open tochallenge, improvement even, by taking intoaccount the views of others. This at least suggeststhat there are grounds for engaging in a debate, atthe level of both the individual and the collective, ifonly in an attempt to improve upon an uncertainview about what makes life go best. However thereare other more substantive reasons for interveningin the good life plan of an individual. In judgingthe goodness of a life we may also raise questionsabout the nature and type of preference pursued. Itis not the mere formulation and then satisfaction ofpreferences that count in our judgements about thegood life, but rather the nature of those preferencesand their relationship to one another.

One can be satisfied, happy even, by living a lifethat involves the satisfaction of meagre preferences.An internee in a concentration camp who fallssatisfied into bed, warm and dry and with a fullbelly might feel content. It is still reasonable to callinto question the goodness of such a life withoutdenying either the prisoner’s experience or the factthat his preferences have been satisfied.

Take another example, I am referred to a painspecialist for symptom control for my neurologicalpain, but I refuse to consider taking the anti-depressant drugs she suggests because I believe thiswould show my pain to be ‘in the mind’. I wouldprefer to be treated with morphine because I haveread that morphine is the best drug for cancerrelated pain. What I choose on the basis of my fearand lack of knowledge will restrict the quality oflife that I also strongly wish to enjoy; yet thedoctor knows that I am likely to achieve this if onlyI would accept the treatment. Whilst we both agreeon the goal we disagree on the way to achieve it. Itis possible therefore to judge, at least of someaspects, of the good life from what might be calledan objective perspective. This said, one must becautious not to interpret this as an argumentjustifying the imposition of the treatment on mealthough acknowledging the possibility of anobjective perspective is the beginning of an argu-ment about what constitutes justified interventionin the life of another person.

Between different people there will be differ-ences of opinion about the relative value andimportance of different life-styles that will not beresolved by appeal to objective qualities. People dohave different views and beliefs, different ideasabout what constitutes a good life when seen as awhole, but at the same time this does not require usto accept that such beliefs and plans could not berevised and improved upon. Nor does it rule outthe view that some life plans are simply morally

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flawed and therefore ought to be constrained,consider the life plan of a committed paedophilefor example.

Quite clearly it is possible to consider theories ofthe good life without reference to ethics; indeed thisis the approach taken within the branch ofphilosophy known as axiology. However this seemsan artificial abstraction when we are consideringthe practical application of a concept such asautonomy. Such theories must inevitably involveethics since it is not enough to consider in whatway a life may be judged a good life withoutconsidering the permissible means to such a life.Unless we are totally sceptical with regard to ethicssome ways of living ought to be condemned and aperson’s right to pursue such a life restricted.

Talk of restriction focuses on interventions of anegative kind, whereas there is a wide spectrum ofwhat may still be termed ‘intervention’. Generallyspeaking the liberal view regards a person’s owngood as insufficient grounds for intervening in thatperson’s life. On a wider view this seems counter-intuitive, since it seems to rule out all sorts ofinfluences including parenting, education, discus-sion even, commonly regarded as forms of inter-vention that may aim at a person’s own good yetare still respectful of a person’s autonomy. In thecontext of health care there is a wide range ofinterventions that aim to promote the good, or atleast the health related good of the person. Healthpromotion, preventive health care, general healthtargets are all tolerated interventions and indeedmay even be regarded as elements of a mature andadvanced society. But balanced alongside thesetolerated interventions is the guiding principle thatthe more severe the intervention the greater thereasons justifying such an intervention need to be.No one should be compelled to comply with ahealth care regime even for his or her own goodeven when there are the most compelling reasons.

I believe that the version of the principle ofrespect for autonomy I have sketched here iscompatible with the practice of palliative care. Onmy view respect for autonomy requires that wecarefully weigh the reasons for constraining thewishes of another, or otherwise intervening in theirlife. Good reasons may justify such intrusions evenat times against the wishes of the individualconcerned. But a note of caution, what I have inmind here for the palliative care context areinterventions such as directing, guiding, evencoercing a person in their interests where thereare the strongest reasons for doing so and theprobability of achieving the goal is high. Here Ihave in mind an example where the person in

chronic pain who wishes to be pain free but doesnot wish to take opiates, might be stronglypersuaded to try such a drug.

However this view also requires that we oughtto defer authority to the individual on questions oftheir own good, and support robustly a right ofnon-interference when the degree of uncertainty asto the good of the outcome is high. In other wordswe may be agnostic as to whether there is anauthority with regard to what is good in aparticular instance, in which case, to be consistentwith the version of autonomy I am espousing,priority should be given to the views of theindividual whose life it is.2

An ethical framework: Autonomy in practice

In this section I want to explore how the principleof respect for autonomy, as I have outlined it canbe applied in practice. The application will followthe categories of an ethical framework illustratedin Fig. 1.

Consider the following case:

Helen, a 58-year-old retired retail manager, hasrecurrent carcinoma of the ovary. She had herinitial surgery nearly two years ago, followed bychemotherapy. She was well until eight monthsago, when she was found to have peritoneal andliver secondaries. She had a full course of chemo-therapy, and did well until she was admitted withcolic and vomiting 10 days ago. This was found tobe due to bowel obstruction at several levels, andthus palliative surgery could not be considered.Further chemotherapy was not felt likely to helpher.With treatment her vomiting has improved to onceevery day or so, and the colic has stopped. Sherefused a nasogastric tube, and asked for herintravenous line to be taken down six days ago,and at her request was discharged home two dayslater with the support of the family doctor andCommunity Nurse team. She has been drinkingclear fluids since then. She feels very weak, but haslittle nausea and is alert most of the time. She hasappeared rather low in mood but not overtly de-pressed, and is pleasant to her family and visitingnurses and doctors. She lives with her husband andtheir two daughters live nearby.She asks to see her physician, as she wishes tomake it clear that she has reached a decision. Shesays that she knows that she is going to die, feelsrotten and has no wish to prolong things. She feelsthat she has said all that needs to be said to herfamily and friends. She knows that she cannot ask

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for euthanasia as such, but now intends to stopdrinking in order to hasten her death herself. Shewants to know that she can do this, that she will bekept comfortable and that no one will set up anintravenous infusion when she cannot argue withthem.

The next day her husband and one of her daugh-ters wish to speak to someone. They are unhappyabout Helen’s decision, and want a drip put up,either now, or if she becomes too weak to say‘‘no’’. The other daughter is apparently ‘‘sidingwith her mother’’.

By reflecting on this case, and using other examples Iwill now give an account of how the principle ofrespect for autonomy might be applied in practice,taking eachcategoryof themoral framework in turn:

1. Best interests: In the health care context,health professionals commonly talk of ‘best inter-ests’ often as a justification for, but also as the aimof, certain kinds of intervention. A person’s ‘bestinterests’ could be defined in terms of the particulargood that health care interventions aim for. Inother words best interests seems to be a claim aboutan objective good. But is this all ‘best interests’means? On reflection there seems to be at least threesignificant components to best interests and it isworthwhile attempting to distinguish these.

First there is the version of best interests mostcommonly intended by health professionals,namely the person’s objective health interests.Now it is certainly the case that an objective bestinterests argument can often provide the strongestreasons for intervening in the life of another person

even where that person has different ideas aboutwhat is in their interests, but mindful that ‘bestobjective health interests’ is a very restricted senseof best interests when compared to someone’soverall interests. Perhaps the clearest example of anapplication of the objective best interests argumentis with a victim of a road accident where theseriously injured driver insists that she is fine anddoes not wish to be taken to hospital, as she will bedelayed in collecting the children from school. Inthis case it would seem right for the healthprofessionals at the scene to disregard the patient’sview and take her to hospital. Imagine that by thetime the trauma victim arrives at the hospital shehas become unconscious and has lost a lot ofblood. Again it would seem reasonable to stop thebleeding and make good the blood loss either bythe infusion of fluids or by a blood transfusion.

A less dramatic example is the patient who visitshis doctor because of a heavy cold. The patientfeels awful and wants something to make him feelbetter. He expects the doctor to prescribe antibi-otics. The doctor however argues that antibioticswill have no effect on the cold virus and advises thepatient to take palliative measures whilst reassur-ing him that if he does not feel better soon he canreturn to the surgery. But the patient is not happy,he insists that he has had antibiotics in the past forsimilar ailments and he wants the same treatmentnow. In this situation the doctor’s continuingrefusal to give the patient what he wants seemsjustified since viruses do not respond to suchtreatment. Moreover, to give antibiotics would beto risk an important common good, a good inwhich this patient would no doubt also wish topartake, namely the availability of a range ofeffective antibiotics for the treatment of bacterialinfections. Now these two cases seem relativelyclear examples where the notion of best interestscan be understood as best objective health interestsand it seems reasonable to allow the degree ofintrusiveness and constraint on the other’s wishesthat the health professional’s judgement entails.The health professional’s judgement carries bothepistemic and moral weight. Difficulties arise whenthe relative importance of such objective interests iscalled into question. Reflecting on the case ofHelen it could be argued that in terms of Helen’sobjective health interests she would benefit fromsome form of feeding and certainly from beingadequately hydrated, she would probably feel morecomfortable and perhaps even live longer.3 How-ever what is called into question in this instance isthe priority that should be given to these objective

Best interests• Objective• Subjective• Absolute

Wishes, choicesPreferences

• Wishes/ choices • Other interests

‘Family’ concerns • Nature of. • Authority of.

Other regarding• Political• Legal • Social

Figure 1. An ethical framework.

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health interests when weighed against the otherinterests Helen has with regard to her own death.

When reflecting on the reasons one may give infavour of intervening in the life of another weightmust be given to a person’s interests as seen fromtheir perspective; their subjective interests. To sayan interest is subjective is not to say that it isprivate, in the sense that only the person whoseinterests we are discussing can know about it. Thesubjective view is merely the view of a person’sinterests as seen from the ‘inside’ so to speak, fromthe perspective of this person. Such a view isprivate only in the sense that others can onlyusually gain insight into this perspective when theperson reveals it to others. Now in terms of whatweight the subjective view carries in determining aperson’s best interests it would seem that where aperson is capable of having such a view it ought tobe given at least equal weight to that of theobjective view. Where there is uncertainty aboutwhat is in a persons overall best interests, and Iwould suggest that this is most cases, it would seemreasonable to give more weight to the subjectiveview, since if there is a mistake to be made it isbetter that a person makes their own mistakes thanhas the mistakes of others forced upon them. Thisis not to say that the subjective view is not open tochallenge. A person can be challenged morally orintellectually by pointing to deficits in their reason-ing, their factual knowledge, or by presentingthem, through argument and discussion, with analternative view.

To complete this taxonomy of interests there isthe category I describe as absolute interests. Theterm absolute is not meant in any strict sense butrather to represent those interests, whatever theyare, which represent what that individual sees ascentral to their identity. Where a decision tointervene, or not, in the life of another rests onthe balance of interests, then such interests can beplayed as the most powerful ‘trump card’ againstthe other sorts of interests which can be musteredtogether as reasons supporting an intervention.For example, a Roman Catholic woman isinformed that she is 12 weeks pregnant with hermuch wanted first pregnancy, but that she also hasan advanced tumour of the cervix that can only beeffectively treated by hysterectomy. Her faith inGod and her belief in the sanctity of life of herunborn child means that she cannot consent to atreatment that would result in the death of herunborn child. The woman insists upon her deci-sion, even though her Church may sanction suchan action under these circumstances, and failure totake any action threatens her own life and the life

of the child. Now her position begins to take on thestatus of an absolute interest in so far as we can besatisfied that she has been made aware of the otherreasons for intervening in this situation and thelikely consequences of her action. If, in the light ofsuch a discussion, the woman feels that life wouldbe intolerable lived in the shadow of such adecision then there is a point at which such a viewought not to be overridden. The weight of absoluteinterests has been long recognised where certainreligious convictions have led to the refusal of a lifesaving intervention such as a blood transfusion.However absolute interests do not have to begrounded in religious faith, any sincere convictionheld in the face of the other reasons for interveningshould be afforded such moral weight. Of coursethe term ‘absolute’ interest is something of ametaphor, a way of giving weight to a person’sinterests and values where the consequences ofabiding by these are severe for the person whoseinterests they are. Helen’s refusal of nutrition andhydration might be regarded as an expression of anabsolute interest, her only means of having thecontrol over her end where more direct methodsare denied her. Clearly some members of her familywould have difficulty accepting this decision,believing they have the right to override such adecision. But their reason’s are theirs and as suchdo not weigh against Helen’s judgement. On paperthis is an easy analysis to make but palliative careworkers may find themselves attempting to supportboth Helen and her family at a time of acuteemotion. There is a further duty on palliative careworkers to find a means of supporting both Helenand her family in a way that respects Helen’sdecision and gently but firmly reminds the familyof the constraints on their right to intrude.

2. Wishes, preferences, choices: There is clearlysome overlap here with the previous category butthere are also some important differences. Beforegoing on to explore these differences I want to saysomething about why there should be such acategory as wishes, choices, and preferences in theframework when some might argue, although Ibelieve wrongly, that this category could be ade-quately described by one word: ‘autonomy’.

As I have noted one of the difficulties with aconcept such as autonomy is that so much ispacked into the concept that the term ‘autonomy’has become an accepted short hand in circum-stances that really require a great deal moreunpacking. Take for example the fact that auton-omy has at least two distinct uses, not alwaysdistinguished in practice. One is autonomy as acapacity and the other is autonomy as a moral

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principle. The definition of autonomy as a capacityfor making reflective choices is important since it isseen as a sufficient condition for a certain kind ofmoral status. But having such a capacity is merelya starting point in the sense that the exercise of thiscapacity is dependent on further conditions, someof which are intrinsic to the individual and some ofwhich are extrinsic. Intrinsic conditions include, atthe very basic level, a functioning brain, but also acertain level of cognitive capacity, which wouldinclude such things as memory, imagination, andthe capacity to assimilate knowledge. Extrinsicconditions include the environment, freedom to actfor example. Perhaps the single most importantextrinsic factor for autonomy is relational in thatthe extent to which one can expect one’s ownautonomy to be respected is relative to the rightand freedom of others to act autonomously. Thisimplies a number of things; my autonomy isenhanced by and dependent on others in that Imight rely on others as a source of information, oras manipulators of the environment or as otheractors who may permit or constrain my ownactions. These conditions of autonomy are veryobvious in palliative care. The woman withadvanced disease, confined to bed and with littlemovement in her limbs is denied the most ordinaryfreedom if the remote control for the T.V. is too faraway, her drinking glass empty and her attendantcall-device beyond her reach. The man whosecancer has recurred relies upon the doctor forinformation if he is to decide to enter a phase Iclinical trial of a new cancer drug. The woman withadvancing neurological disease who asks her doc-tor for a prescription of a lethal cocktail of drugsso that she may end her life at a moment of herown choosing encroaches on the autonomy of theperson to whom she makes the request.

Attempting to elicit and indeed attending to aperson’s wishes, choices and preferences are meansof gaining insight into their interests. Giving moralweight to a person’s interests is a statement aboutthe place the individual has in shaping anddirecting his or her own life. This goes some wayto describing a principle of respect for persons thataccommodates a principle of respect for autonomy.We may consider it important to respect a person’swishes even though they may lack autonomy andindeed be dead. But what flows from this is relativeto the obligations and autonomy of others. Nordoes it mean that we should always and everywheregive people what they wish, choose or prefer oreven accept such things at face value. Your ownview of your own good may be improved from the

‘outside’ so to speak by being challenged byalternative views.

Wishes may range from aspirations for thepossible, the improbable to the impossible, and canbe regarded as intensely personal, if not private. Itwould seem overly intrusive to suggest that aperson’s wishes, in so far as they are a feature ofthat person’s mental life, ought to be constrainedin any way. But where wishes give rise to concretechoices then wishes ought to be influenced in anumber of ways, including what might be termed a‘reality constraint’. For example, the sort ofinformation given to the patient considering par-ticipating in a clinical trial should focus on theprobable rather than the improbable, even thoughthe individual’s decision may in part be influencedby a wish for the improbable.

A task in palliative care may be to challenge andchange even a person’s preferences where these arebased on deficient or even false knowledge, or solimiting as to be easily improved upon as RebeccaDresser remarks:

We do not advance people’s autonomy by givingeffect to choices that originate in insufficient ormistaken information. Indeed interference in suchchoices is often considered a form of justifiedpaternalism (1995, p. 35).

Although, as a general rule, there is good reasonto set the threshold for capacity at the lowestpossible level, so as to include as many individualsas possible into the class of decision makers, thereis also good reason to be discerning betweendifferent sorts of decision. Forms of justifiedintervention the palliative care worker might con-sider include a formal assessment of the capacity ofthe person to make the decision they now wish tomake.4 More usual interventions would includeinforming the person of relevant facts and explor-ing the possible alternatives with them. In extremecases, and Helen’s situation may be regarded assuch, then confronting the decision maker with thelikely consequences of their decision both forthemselves and for those close to them might bejustified. In my view such measures could beregarded as a means of acknowledging bothHelen’s autonomy and her responsibility.5 In thisrespect, although we may regard Helen’s decisionto stop eating and drinking as justified in relationto her ‘absolute’ interest in controlling her end oflife choices, we may also regard, as part of ourrespect for Helen as a person, a need to explorewith her the likely impact of such a decision onthose who are close to her.

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3. The family: In each category discussed so far Ihave attempted to sketch an account of the extentand scope of individual autonomy, describing as itwere the boundary conditions of individual auton-omy. One set of conditions involves the individ-ual’s own capacities and also the environment inwhich they are located, another involves relationalfactors. Amongst these the family is often singledout as constituting a special network of meaningfulrelationships. In the context of health care thefamily represent another layer of complexity in thedecision-making process. Health workers fre-quently encounter the family of patients who, invirtue of their status as family, assume a ‘right’ tobe taken into confidence, sometimes claiming theauthority to be involved in making decisions forthe patient. It is understandable that such anassumption might be borne out of their intimacywith the patient. After all a person who is close tothe patient may be more successful in theirspeculation about what is in the interests of anincompetent person than the health professionalwho is a stranger. Indeed the family may asBlustein suggests ‘shore up the patient’s vulnerableautonomy’ (Blustein, 1993, p. 6). To do justice tofamily relationships it has been argued that ratherthan an ethics of strangers an ethics of intimatesshould be applied. Weijer (2000) argues that it isstrange to apply a principle of confidentiality forexample, to families who already share an ‘indis-soluble bond’.

However we do have reason to be at least a littlecircumspect about what we mean by the familyrelationship and what follows morally from such arelationship. First, how is ‘family’ to be defined?The idea of a man and woman who are marriedwith children is but one form of family relation-ship, which, in a pluralistic society might alsoinclude unmarried partners, same sex couples orany combination of such relationships deemed‘significant’ by those involved in them. I doubthowever that any such relationship constitutes anindissoluble bond in any significant moral sense ofthat term. What matters in the palliative carecontext where there are likely to be complexdecisions to be made, is that every effort is madeto identify the ‘significant other’ at the earliestopportunity. I am reminded of a patient who wasseriously ill with leukaemia and both his wife andgirlfriend were requesting information about hiscare. Both might be seen as having a legitimateclaim to this information. However the patient washimself able to resolve the dilemma by indicatingwhich of the two he considered significant. Thedifficulty arises when the patient is no longer

competent and there has been no indication of whothe significant other may be.

Having raised doubts about there being anynecessary form of family we must also be cautiousabout what follows in circumstances where it hasbeen possible to establish the fact of such arelationship. Take the claim about confidentialityfor example. We may accept the point that familiesdo have intimate knowledge of one another butstill acknowledge that even within families there isusually a line drawn between what is and what isnot common family knowledge. Take, for example,the fact that my wife keeps a diary. Although I amclose to her and know many personal things abouther it does not follow that I am entitled to read herdiary without her permission. In the context ofpatient/family relationships the palliative careworker must act as an honest broker when dealingwith the sometimes-conflicting claims of familymembers. Again a personal example may help toillustrate the point. I have six sisters who love medearly but I imagine that if I lay in a comasurrounded by my sisters there would be at least sixdifferent views about what was best for me. Thetelling point is that perhaps none of these viewswould coincide with what I would want for myself!So whilst we may have a strong intuition that thefamily has a role in determining a person’s bestinterests, it cannot be a unique or privileged view.

Nothing hinges, morally speaking, on the ‘fam-ily’ as a unique institution but this is not to say thatthat there are no special relationships, includingmore conventional notions of family, betweenpeople and groups of people. Nor is this to saythat the criticisms levelled at respect for autonomyin the context of families are misplaced. Howeverby treading cautiously it is possible to see what isimportant about individual autonomy without atthe same time downgrading the importance offamily or other significant relationships betweenpeople.

Respect for autonomy is perhaps too abstract aconcept for significant others to consider whentheir focus is caring for their loved one. But if it isnecessary to defend individual autonomy, evenwithin the context of a loving family relationshipthan palliative care workers can employ practicalstrategies rather than elaborate moral argumentsto secure this goal. To employ a policy of opencommunication with the patient and their familythe health professional must establish what thepatient’s preferences for sharing information abouttheir condition and prognosis actually are. Whilstsome patients welcome open and honest commu-nication between their professional carers, them-

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selves and their family some do not and therefore itwould be as wrong to assume this as to deny thatthe family should be informed. Real life complexityrequires prior groundwork to determine prefer-ences of this kind and the flexibility to respond tochanging circumstances. Palliative care workersought to encourage patients, not just to expresstheir preferences, but also to think about theconsequences of having their preferences met. Thisis one context in which talk of the correlativeresponsibility alongside the rights of autonomy canbe seen. The patient who refuses to disclose theircondition to the family in order to protect themought to be made aware of what is likely to followfrom their decision.

4. Other regarding: The family is but oneexample of where there are important otherregarding constraints upon individual autonomy.To consider a proper view of the individual andtheir rights one must consider how we understandthe very concept of the individual. The highlyabstract interpretation of autonomy sees the indi-vidual as morally quarantined; a unique individualisolated from any context and divorced of rela-tionships. As I have argued, this is an impoverishedaccount of both the person and of autonomy. Thenexus of relationships with family, with profes-sionals, with the wider community within whichthe individual is nested influences the way in whichpersonal autonomy can be exercised. There areimportant justified constraints on what the patientcan demand just as there are such constraints onwhat the health professional is obliged or ought todo.

What a patient may request of a healthprofessional is necessarily constrained becausewhat the health professional can do is circum-scribed by their professional and legal duties. Forexample many practitioners may find themselvesable to agree and perhaps even support Helen’sdecision to stop eating and drinking. However Ibelieve most palliative care workers would find itproblematic if Helen had requested a lethalinjection or advice on how to hurry her end stillfurther. I am not offering the highly conservativeargument that laws and guidelines should not bechallenged but rather that the relationshipbetween health professional and patient is priv-ileged but only within a much wider circle ofconstraint represented by the multiple domainswhich make up the community in which theyreside. Those who might be sympathetic with arequest for euthanasia from Helen should seek tochange the law prohibiting such acts by demo-cratic means rather than by dramatic individual

gestures.6 Individuals are also constrained bysocial values and the personal values of others.Indeed, as I have argued the grounds of anindividual’s autonomy requires a margin ofreciprocity and tolerance for the autonomy ofothers. A patient may have a legal right torequest the removal of a ventilator but it wouldbe a draconian step to force a doctor to performsuch an act7 without due consideration for theconscientious objector.

Finally there are considerations of justice anddistributive justice in particular in which the rightsand claims of an individual must be weighedagainst the claims of others. Balancing the claimsof different individuals may necessitate constraintson what people claim for themselves. At the macrolevel of government, balancing the sometimes-competing interests of different people, and deter-mining the set of compromises that can bestprovide for such interests is the proper role ofgovernment (Dworkin, 1993). In other words acondition of living within a society entails that wesubmit to some constraints on our autonomy inorder to enjoy the benefits of that society. Thesame is also true of the micro level of individualpatient decisions health professionals have anequally legitimate role in balancing the competinginterests of different individuals, even as to how adoctor or nurse divides her time between thedemanding and vociferous patient, for example,and the much sicker but silent other. Respect forthe autonomy of individual patients is necessarilyconstrained by what I have described as ‘otherregarding’ considerations.

Conclusion

In this paper I have moved from an account of thecontemporary meaning of autonomy, and how thishas been influenced by various philosophical andpolitical ideas, to a practical model of how aprinciple of respect for autonomy can be applied topalliative care. The ethical framework I describe isbut one form of device practitioners may use to aidreflection on the reasons underpinning their judg-ements to intervene or not in the lives of theirpatients. This paper is not the place to reflect onthe intricacies of effective communication andemotional support although these are also neces-sary elements in a complete reflective framework.

Palliative care is one discipline within healthcare that has a strong view as to the nature of thegood it aims to promote in terminal disease. Thegood or goods of palliative care have quite diverseorigins from religious, and specifically Christian,

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influences to the liberal ‘secular’ ethics that nowunderpins western medicine. What I have argued inthis chapter is that although it seems implausiblethat there can be an absolute authority as to thenature of the good life for individuals it is not soimplausible that certain goods can be establishedobjectively. Candidates for such goods in thecontext of palliative care would no doubt includebeing pain-free but might also include such valuesas dignity,8 reconciliation, and peaceful death.However advocates of such ‘objective’ goods mustbe mindful of the phenomenon of ‘endorsementconstraint’ as an important limiting factor (Kyml-icka, 1990). What this means is that although wemight convince people to conform to a set ofvalues, say for example to a palliative care ideal ofterminal care, mere conformity cannot make apersons life go better from the subjective perspec-tive. A crucial question in applying a principle ofrespect for autonomy is under what circumstancesor for what reasons do we give weight to thatsubjective perspective?

Acknowledgements

With thanks to the very helpful comments of thetwo anonymous referees instructed by Medicine,Healthcare and Philosophy.

Notes

1. I am presenting a deliberately simplified version of what

has been given very sophisticated philosophical treat-ment elsewhere, see for example Parfit (1991).

2. Of course this argument needs to be nuanced todifferent contexts, there may be some contexts in

which authoritative medical knowledge provides agood enough reason to overrule the patient, or atleast deny their demands as in the example of a

patient demanding antibiotics for a virus as discussedbelow. However medical authority should not betaken as a reason to assert the truth of a doctor’s

beliefs over those of the patient where they differ inwhat constitutes claims about the good life for thepatient. Rawls would argue, for example, ‘‘that theburdens of judgement set limits on what can be

reasonably justified to others’’ (1993, p. 61) andhence, in my view, respect for persons allows fortolerance in differences of belief.

3. To emphasise: by objective health interests I mean avery narrow conception of Helen’s interests purely interms of what health interventions may achieve – I

concede that this is too narrow a view of interests.4. This may be done informally or more formally by

utilising one of the many scales or frameworks for

assessing capacity, see for example Grisso and Appel-baum (1998).

5. Responsibility is of course a key correlative of auton-

omy, and an important feature of this discussion is thequestion of what it would mean to remind a dyingperson of their own responsibilities.

6. See for example the approach taken by Diane Pretty inthe UK, who made a legal challenge to support herclaim for assisted suicide. (BBC, 2002).

7. See also the UK case of Miss B who also made a legalchallenge in order for her decision to have ventilatorsupport withdrawn be acted upon, although the

decision in her favour was not without considerationfor the conscientious objection of those caring for herat the time (BBC, 2002).

8. The meaning and relevance of dignity has been

challenged and indeed rejected by amongst othersMacklin (2003, p. 327), see also my brief electronicresponse to Macklin: http://bmj.bmjjournals.com/cgi/

eletters/327/7429/1419 which says something about myown position, but of course the meaning of dignity isnot without its problems. However such concerns can

be dealt with both critically and sympathetically, seeHayry (2004).

References

BBC Diane Pretty: 2002, Timeline: http://news.bbc.co.uk/

1/hi/health/1983562.stmBBC Miss B’s Story: 2002, http://news.bbc.co.uk/1/hi/health/1887914.stm

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Mill, J.S.: 1859 ‘On Liberty,’ in: M. Warnock (ed.) (1977)Utilitarianism. Glasgow. Fontana

Parfit, D.: 1991, Reasons and Persons. (1st ed). (Reprint)Oxford: Clarendon Press.

Rawls, J.: 1993, Political Liberalism. New York: ColumbiaUniversity Press.

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