Journal of medical ethics 1993; 19: 71-76

Medical futility, treatment withdrawal andthe persistent vegetative stateKenneth R Mitchell, Ian H Kerridge and Terence J Lovat University ofNewcastle

Authors' abstractWhy do we persist in the relentless pursuit of artificialnourishment and other treatments to maintain a

permanently unconscious existence? In facing the future,if not the present world-wide reality of a huge number ofpersistent vegetative state (PVS) patients, will they betreated because of our ethical commitment to theirhumanity, or because ofan ethical paralysis in the faceof biotechnical progress? The PVS patient is cut offfromthe normal patterns ofhuman connection andcommunication, with a life unlike otherforms ofhumanexistence. Why the struggle to justify ending a lifewhich, it is said, has suffered an irreversible loss of thecontent of consciousness? Elsewhere, the authors haveaddressed the ethical controversies and confusionengendered by ambiguous terminology, misuse ofmedicalfacts and the differing interpretations of whatconstitutes 'effective' treatment: in particular, the issueof whether in fact artificial nutrition and hydration is a

medical treatment, or simply part of the obligatory care

owed to all patients, permanently unconscious or not. Inthis paper, we intend to argue that recent analyses ofmedicalfutility, its meaning and ethical implications,despite an absence ofpublic consensus, permit sometentative re-evaluation ofour ethical obligations to thePVS patient.

The provision or otherwise of artificial nutritionand hydration (ANH) is, and has been for some

years now, a matter of great controversy. The issueofANH is made more complex when the patient isincompetent, that is to say, incapable of ever

making a free and informed choice as to itsprovision or otherwise. The persistent vegetativestate (PVS) patient is an example of such an incom-petent patient for whom the resolution of this verycomplex issue has important life and death con-sequences.

The persistent vegetative stateSurveys in Japan (1) and the Netherlands (2) indi-cate that 40 per cent of vegetative states are causedby severe head injuries which result in widespreadseverance of white-matter fibres to and from thecerebral cortex. A further 40 per cent are caused byhypoxic necrosis of the cerebral cortex followingcardiac arrest or medical accident. Various acutecerebral diseases account for most of the remainder.The end-result is that patients in a persistent vegeta-tive state are considered to have permanently lost thefunction of their cerebral cortex (3,4).The simplest way of understanding the difference

between the cerebrally dead permanently unconsciousPVS patient and brainstem death is to consider theroles played by the brainstem and the cerebral cortexas part of the central nervous system. The brainstemis the stemlike portion of the brain connecting thecerebral hemispheres with the spinal cord, whichgenerates the capacity for consciousness and neocor-tical functioning, controlling autonomic capacitysuch as respiration and cardiovascular integrity, andintegrating the physiological functioning of theperson as a whole.

Additionally, it contains the activating or arousalsystem for the entire upper brain, called the ascend-ing reticular activating system (ARAS). The cerebralhemispheres, or neocortex, in turn, are responsiblefor the content of consciousness. When brainstemdeath occurs, the capacity for neocortical function-ing and thus consciousness, is lost. By contrast, thebrainstem in the PVS condition, including theARAS, is relatively intact, however, the cerebralhemispheres suffer irreversible damage (4). Thus,within a short period following the initial trauma, thepatient will begin to breathe spontaneously, the eyeswill open and 'wander' and respond normally tolight, and periods of sleep will occur. The protectivegag, cough and swallow reflexes are usually normaland hand-feeding is possible by placing food at theback of the throat, thus activating the involuntaryswallow reflex. All voluntary reactions or behav-ioural responses reflecting consciousness, volition or

emotion at the cerebral cortical level are absent.Noxious stimuli may activate peripherally locatednerves, but there is no observable experience of pain

Key wordsPersistent vegetative state; medical futility; medical ethics;permanently unconscious; public policy; decision-making.

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72 Medicalfutility, treatment withdrawal and the persistent vegetative state

or suffering. Only a brain with the capacity for con-sciousness can translate neural activity into an expe-rience. The PVS patient may 'react' to painfulstimuli, but he or she does not 'feel' pain in the senseof conscious discomfort of the kind that doctorswould be obliged to treat and of the type that wouldor should seriously disturb the family (4). PVSpatients, then, are awake but amented, that is, theymanifest a complete loss of mental functions, theyhave lost the function of the cerebral cortex. Theyremain permanently unaware, and though about halfdie within 12 months, a quarter may survive formany years, even decades (1,2). In a recent study ofthe prognosis of post-traumatic vegetative statepatients (5), no patient who remained vegetativebeyond three months became independent of nurs-ing care. The continued survival of the PVS patientdepends on basic nursing care and on an adequatesupply of artificial nutrition and hydration.

However, the reliability of a diagnosis of PVS has asmall degree ofuncertainty because, as yet, no specificlaboratory studies can confirm the clinical diagnosisof PVS. Although advances in neurological imaging(for example, Positron Emission Tomography -

PET) may assist in diagnosing neocortical damage, itremains unproven as to whether this will enable anaccurate determination of neocortical death to bemade (4). Furthermore, electroencephalography(EEG) is not helpful (6) and computed tomographyand magnetic-resonance imaging only show evidenceof severe brain damage, not that the cortex as a wholeis non-functional. (In the absence of investigativemeasures to confirm diagnosis, the diagnosis of PVSdepends upon sequential neurological observationsmade over a period of time (4). Although there is gen-eral agreement that there can be no immediate diag-nosis of PVS, there is some dispute as to the point atwhich a confident diagnosis of PVS can be made.Many clinicians believe a diagnosis can be made afterthree months without patient improvement (6)whereas others, such as the AMA, set a conservativecriterion for diagnosis as 12 months of unawareness(7).) Despite the element of uncertainty in the diag-nostic process, extremely few patients who remainvegetative after three months ever recover cognitivefunctions where it is believed that the diagnosticcriteria were correctly applied (4,5). The few who doregain consciousness remain very severely physicallyand mentally disabled and dependent (5). (Thechronological component of the diagnosis of PVSis of paramount importance as regards clinicalmanagement. In the early months, the goal is tostabilise the patient and provide a high standard ofnursing care, adequate nutrition and access tostimulation programmes which may, in some cases,lead to clinical improvement (8). Once diagnosis ofPVS has been made, the treatment goals may beentirely different.)

Extrapolations from surveys (1,2,3,4,6,9) suggestthat the number of new PVS patients increases by at

least 2000 annually in the western world and byabout 600 in the UK alone, with a prevalence ofabout 1500 for the UK (6) and 5000 for the USA(4). Such estimates are conservative and based onacute cases only. The number would dramaticallyincrease with the addition of patients with chronic,dementing brain disorders who may eventuallybecome vegetative.

The cost of survivalIt is now 16 years since Karen Ann Quinlan (a PVSpatient) occupied the collective ethico-legal minds ofthe western world. Yet, it is clear from accumulatedwritings that we are still concerned, if not puzzledabout the ethical stance we should adopt towardssuch patients. There are, for example, concernsregarding their status and the definition and deter-mination of death according to neocortical criteria(4,10,11). Impetus for this has come from: 1) therapid advance in organ transplantation technology -PVS patients would provide a potential source forscarce organs; 2) the need to ensure a just and fairallocation of scarce resources, and 3) regard for theautonomy and dignity of the PVS patient.

Concerns arising from the scarcity of medicalresources have led some to propose that considera-tion of cost should be a factor in all clinical ethicaldecision-making, particularly in relation to patientssuch as those in persistent vegetative states. Shouldthe cost of continued health care for the permanentlyunconscious, or for any patient, be a factor in clinicalethical decision-making? While costs vary, it isundeniable that it is a costly exercise to maintainthese patients in a persistent vegetative state. It hasbeen argued, for example, that an affluent societyshould feel obliged to meet the costs, whereas animpoverished community must first ensure a justallocation of its scarce health resources (12). It mayalso be argued that given the scarcity of medicalresources in affluent societies, they also cannotafford the costs and must make clinical ethicaldecisions with due regard for cost-efficiency. Canthe argument to meet the costs involved in maintain-ing a PVS patient be sustained in the face of the5000 or so PVS patients in the USA alone, a figurethat it has been predicted will increase significantlyin the future, especially when coupled with theincreased longevity of people? (4)

Because the PVS patient can survive for decades,when life-sustaining treatment, such as nutritionalsupport is withdrawn, the cause of death may seemto be the act of withdrawal itself, not the significantimpact of the condition itself. This problem is all themore vexing because the usual treatment issue in thecase of a PVS patient is whether to stop artificialnutrition and hydration (ANH), still the most con-troversial form of treatment withdrawal. While it iswidely accepted that nutritional support may bewithdrawn when the burdens to the patient truly

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Kenneth R Mitchell, Ian H Kerridge and Terence J Lovat 73

outweigh the benefits, PVS patients push our com-mitment to this patient-centred standard to thelimit. It is said that the PVS patient experiencesnothing (9): the benefits and burdens of continuedtreatment fall mainly on others.

Futility and the obligation to feedSerious ethical consequences flow from the doctor'sclaim that a particular treatment is futile, and,although such claims have far-reaching implications,there is little consensus about how futility should bedetermined in practice (13). The debate on themeaning offutility and related operational criteria isstill in its infancy (14), however, its history reachesback to medical antiquity (15), where the so-calledquantitative and qualitative aspects of futility hadalready been clearly recognised (16,17,18).Quantitative aspects of futility refer to a very highimprobability or extreme unlikelihood of treatmentsuccess, an expression that is quasi-numeric; qualita-tive refers to the quality of the outcome that treat-ment would produce for the patient, for instance,treatment that fails to end total dependence onintensive medical care, as does nutritional supportfor the PVS patient, would be judged futile (19).The Hippocratic Corpus, for example, encourageddoctors to recognise the limits of medicine, 'to refuseto treat those who are overmastered by theirdiseases, realising in such cases medicine is power-less' (17). In modem terms, the perception of futilityderived from the Hippocratic Corpus has been con-sidered as probabilistic or quantitative (19). On theother hand, Plato had a qualitative perspective offutility which emphasised the inappropriateness ofpersisting with treatment which leaves the survivingpatient with a useless life '... Medicine was notintended for them and they should not be treatedeven if they were richer than Midas' (18).The qualitative aspect of futility highlights the

need to weigh and compare the expected effects andthe outcome benefits that might come from medicalintervention. The provision of artificial nutrition andhydration for the PVS patient, like other medicaltreatments (for example the use of antibiotics), issubject to ethical reflection as to whether it ismorally obligatory or morally optional. One of themore usual ways of determining whether a medicaltreatment is obligatory or optional is to consider itsexpected effects, benefits and burdens. For example,doctors may argue that artificial nutrition and hydra-tion is effective in a limited sense, as alimentation ornutritional support intended to achieve carefullydefined physiological objectives or goals. As a physio-logical intervention, alimentation is a medical treat-ment and can be effective in keeping PVS patientsalive for years (6,20). But what benefit does the PVSpatient derive from continued existence? Nutritionalsupport can effectively preserve multiple organ-

systems in a PVS patient, but it cannot restore thatpatient to a conscious, reflective life: accepting ofcourse, that it may support the unconscious patientuntil such time as he/she regains consciousness.Though generally of no great burden to the PVSpatient, we may well ask whether such alimentarysupport is futile, especially since the patient remainstotally dependent on medical care. It may be arguedthat it is futile because the ultimate goal of anymedical intervention should be improvement of thepatient's prognosis, comfort, well-being, or, generalstate of health (19,21). Alimentation, though itproduces certain positive and measurable physio-logical effects, does not, in the case of the PVSpatient, ultimately result in either short or long-termbenefits of the kind consistent with our humanity(6). Many of those who reach such a conclusion,nevertheless are reluctant to withdraw ANH fromthe PVS patient because: 1) the PVS patient isneither dead nor dying; 2) as the patient is generallyrobust, the act of withdrawing ANH seems likeintentional killing; 3) the patient's family wish treat-ment to continue and, 4) the provision of ANH isregarded by them as morally obligatory (22). Thereasons normally advanced for withdrawing treat-ment - incurable suffering, terminal illness andpatient request for withdrawal of life-support-ing treatment - do not apply in the case of PVSpatients.When then, if ever, does an obligation to feed the

permanently unconscious cease? The view thatartificial nutrition and hydration is a positive duty orobligation which remains in force always, but doesnot apply to every case, permits a re-evaluation ofour ethical obligation to feed the unconscious whenit is clinically certain their condition is irreversible(23). A positive duty, like ethical principles ingeneral, has only prima facie standing, that is, thoughalways valid, we are not necessarily obliged to carryout the duty in every case. The positive obligation toprovide ANH to the permanently unconscious maybe overriden, we believe, when we are nmorally certainthat their condition is irreversible. Available clinicalevidence would suggest that reasonable moralcertainty exists somewhere between three months asa minimum (5) and twelve months for the 25 percent or so who survive in the vegetative state forthree years or more (24). Recourse to alimentationshould therefore be conditional and done solely tomaintain life until consciousness returns and not atall to maintain total medical dependence in a state ofpermanent unconsciousness which clinical dataindicates is certain beyond twelve months post-trauma. When the clinical prognosis is certain,though not absolute, we believe there already existsufficient moral reasons to make feeding the per-manently unconscious optional. Such an action hasadherents who base their decision either on futilitygrounds alone, or on the grounds that continuedANH is not cost-effective, or, on a combination of

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74 Medicalfutility, treatment withdrawal and the persistent vegetative state

futility or costs with a negative net burden-benefitcalculation, or simply on a profound sense that fur-ther treatment would be fundamentally wrong.People holding such views argue that even whenpatients are not irreversibly dying and their deathsare not imminent, medical treatment may beoptional even if it could prolong life for an indefiniteperiod (25).The issue of whether the medically provided

nutrition and hydration can become excessively bur-densome to the patient and, therefore, constitutemorally optional means, is not a major concern withthe permanently unconscious. The medical reality,as we now know, is that the experience of pain andsuffering is an attribute of consciousness. It is simplynot possible, based on available evidence, for thepermanently unconscious patient to experience theburdens of pain and suffering as these require theintegrated functioning of both the brainstem and thecerebral cortex (9). The provision of ANH to thesepatients can never be perceived by them as a burdenbecause they remain permanently unaware.

Even if we accept the conclusions of modernneurology regarding PVS patients and the absence ofpersonal suffering, nonetheless, their condition is soalien that human compassion demands an end to thesignificant burdens and suffering (psychological,emotional, physical, financial) borne by both thefamily and the health care team and to a lesserextent, society (23,26). To call continued life such asthis a 'benefit', or, the absence of suffering as indi-cating a 'tolerable' burden, is, at the least, dubious.To argue that the 'benefit' is in our affirming theirdignity and in maintaining human solidarity (12) isno more convincing than the counter-argument thatwe should affirm their dignity by allowing them todepart. But who should determine whether con-tinued unconscious existence is a benefit? Feedingthe PVS patient may be judged to be futile if themedically determined goal is to restore cognition,but it may nonetheless be regarded as worthwhile interms of the emotional and symbolic benefits accru-ing to the patient's family or society.We believe the view that continued ANH is a

confirmation of the duty we have to keep faith withthe PVS patient is unbalanced, because it bothassumes that the patient would prefer a vegetativeexistence to death and ignores other values whichcall for compassionate action for the patient andthe minimisation of suffering for those othersinvolved with the patient. Unfortunately, mandat-ing the use of ANH with PVS patients as publicpolicy seems to have been adopted as a fundamen-tal stand against involuntary euthanasia and thedanger of the 'slippery slope' (12,22). However,modern nourishment technology is now soadvanced that not only must discretion be exercisedin its initial use but also in its continued use in caseswhere it becomes clear that the hoped-for benefit isnot achievable.

Futility and who should decide?We recognise that the use of a determination thatcontinued treatment is qualitatively futile, as a basisfor overriding the positive obligation to providenutrition to the irreversibly vegetative patient, is notwithout its problems (27).

While the debate on the meaning of futility isevolving, it is by no means an 'illusory' concept (28)and provides at least the beginning of a basis to limitor cease treatment without the need to debate,define and reach a socio-political consensus for whatshould be a fair procedure for allocating resources.Quite clearly though, there must occur a processthrough which a clear sense of public values willemerge on this matter.

In the meantime, we argue that the conclusionthat ANH is qualitatively (and quantitatively) futilein the case of a surviving PVS patient is a clinicalethical decision involving a consideration of 1) themedical diagnosis of PVS; 2) the determination of ahighly probable irreversibility, and 3) the wishes ofthe patient (if known), or the view of the patient'ssurrogate. Such shared decision-making is in con-trast to those who argue that doctors are obliged towithhold futile therapies and that to offer them mayconstitute a form of negligence (29). The claim,then, that ANH is futile, in that it offers no reason-able hope of real benefit to the PVS patient, wouldrepresent a significant shift in the ethical obligationsowed by the doctor to the patient. Once the clinicaljudgement has been made that unconsciousness isirreversible, ANH should be discontinued and thepatient allowed to die. The doctors and care-givers,family and public, have all discharged their moralobligations by providing competent and loving carein their hope that the patient might recoverconsciousness (23).The family may still elect to nourish the PVS

patient at home, perhaps they believe it is their duty,or, they may simply wish the patient to die in theprivacy of the family home. When the final diagnosisof irreversibility is made clinically certain, however,the hospital, it can be argued, has discharged itsethical obligation to the patient and should thencease the provision of artificial nutrition and hydra-tion. However, the decision that certain medicalgoals are not worth pursuing, or, in the case of thePVS patient, not achievable, is value-laden and maycome into conflict with other values involving thegoals of therapy, the ends of medicine and thosewhich for emotional, symbolic or religious reasonsaccord biological life alone as an outcome, the samestatus as cognitive and sapient life. In the case of thePVS patient, the determination of irreversibility canonly be made by the doctors alone and given theproblems of clinical diagnosis and prognosis, thisdetermination is essentially a statement of probabil-ity which can only approach absolute certainty.Nevertheless, the determination of continued treat-ment as futile and thus optional, should be a shared

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Kenneth R Mitchell, Ian H Kerridge and Terence 7 Lovat 75

judgement. In the short term this determination, thisdecision, should involve both the doctor and thepatient's surrogate and there should be a sensitivediscussion about futile therapies, withdrawal oftreatment and what the surrogate would intend toachieve if treatment were continued. Decisions towithdraw therapy that is deemed futile for the PVSpatient would then follow 1) clinical judgementsregarding the irreversible nature of the conditionand, 2) explicit considerations of the patient's surro-gate's values and goals for therapy. (In essence, ifused as a focus for discussion of prognosis, values,benefits, burdens, quality of life, and the ends andgoals of medicine, rather than in the guise of anobjective criterion for clinical decision-making, theconcept of futility may enhance the process of shareddecision-making in which the doctor and thepatient's family, surrogate or others are involved(30,31).) In the long term, social consensus must besought on ways to resolve conflicts through a publicprocess of social and political decision-making(14, 17). A decision to terminate treatment must beshared and may well be delayed until the family hashad time to work through and accept the limitedoptions available to them.

In Australia the legal position of decisions toterminate treatment remains unclear as it was untilrecently in the UK (6). In the USA, where there hasbeen much more public and ethico-legal discussion,the concept of futility can sanction restrictions in theallocation of health care resources. Patients cannotdemand 'futile' therapy, and society and doctors areunder no obligation to provide such therapy (13).This, too, is largely the situation in Australia and theUK where the duty of care is not binding when treat-ment is judged 'futile'. Public policy leaves thedetermination of futility to reasonable medicaljudgement, and therein lies a large part of the prob-lein. Although we might expect doctors to agreeabout the type of clinical evidence necessary to jus-tify a futility claim, this is not the case in general.Doctors can, and do, disagree about two things withregard to medical futility - the probability oftreatment success, and more pointedly, the goals oftreatment. This latter problem is the one mostpertinent to the PVS patient. Is the goal of sustaininga biological, but unconscious life in the case ofPVS patients, sufficiently weighty to be assigned thestatus of a real and true benefit? The problem seemsto be that some doctors fail to make the importantdistinction between the effect and its specific benefitand the overall outcome benefit of continued treatmentto the patient and his/her life (19). Failure to makethis distinction can elevate the importance of thephysiologic effects of ANH over the benefit to thepatient as a whole. It is no surprise, then, that thelegal situation with respect to withdrawal of ANHfrom the PVS patient is unclear, and even less sur-prising that few doctors will withdraw ANH evenwhen convinced that its continuation is funda-

mentally wrong and not in the best interests of thepatient. Such actions will only follow when it is clearthat the medical profession as a whole is preparedpublicly to acknowledge the futility of treating thePVS patient.

Perhaps it was for this reason that a working partyof the Institute of Medical Ethics recently urged themedical profession to recognise publicly that with-drawal of artificial nutrition and hydration may be anappropriate way to manage vegetative patients (6).Public declarations of this kind have three importanteffects: first, they raise public awareness and gener-ate discussion that leads on to a growing politicalconsensus based on social conceptions of reasonable-ness, the fair distribution of scarce resources and theworthy goals and ends of medicine (23,32); second,they enable doctors to raise the withdrawal optionsensitively with the family of the PVS patient; finally,they help to clarify legally the duty of care owed bythe doctor to the patient. It is in these three spheresthat the issue ofANH and the PVS patient needs tobe resolved. The exercise of care in the futilitydebate is essential as there are already efforts toextend the notion of futility beyond PVS to cases ofsevere dementia and organ failure.

Kenneth R Mitchell, MSc, MED, PhD, Grad DipRelSt, FAPsS, is Senior Lecturer in Health Law andEthics in the Faculty of Medicine, University ofNewcastle. Ian H Kemidge, BA, BMed, (Hons),MPhil, is Clinical Lecturer in Health Law and Ethics inthe Faculty of Medicine, University of Newcastle.Terence 7 Lovat, BEd, BLitt, MTheol, MA, PhD, isSenior Lecturer in Sociology and Ethics, the Faculty ofEducation, University of Newcastle.

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