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The Appleton International Conference:
developing guidelines for decisions to forgo life-prolonging medical treatment

Contents

Introduction

Part I [Decisions involving patients who have decision-making capacity or patients who have executed an advance directive before losing this capacity]

Part II [Decisions involving patients who have lost the capacity to make decisions and who have not executed an advance directive]

Part III [Decisions involving neonates and other patients who have never achieved decision-making capacity]

Part IV [Decisions to forgo life-sustaining treatment under conditions of scarcity]

List of Authors

Acknowledgements


[Note to this HTML version.]

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The Appleton International Conference:
developing guidelines for decisions to forgo life-prolonging medical treatment

John M Stanley      Guest Editor

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Introduction

The Appleton Conference Project began in 1987 with an international working conference for practising clinicians regarding decisions to withhold or withdraw life-sustaining treatment. Thirty-four invited participants from nine countries met over a period of four days. Each presented a case from his or her own practice in which a decision whether or not to initiate or continue a life-prolonging treatment or procedure had caused particular ethical anguish. The cases were discussed openly and candidly both in small groups and in plenary sessions; participants probed for underlying agreements, sometimes across some very different perspectives, on which they could make some basic distinctions and work towards a common basis of understanding of what is at stake in these decisions and what procedures can be most helpful in protecting what is at stake.

  In the spring of 1988 a second working conference was convened. Thirty-three delegates from ten countries met to produce a model set of guidelines for discussion in medical and medical ethics communities internationally (1) that would address both decisions to forgo medical treatment, including life-prolonging treatment, precipitated by autonomous requests by patients or their surrogates, and decisions to forgo medical treatment as a result of pressures due to scarcity.

  That set of guidelines was published as The Appleton Consensus: suggested international guidelines for decisions to forgo medical treatment in the Journal of the Danish Medical Association (1989). It was reprinted in the Journal of Medical Ethics (1989) and subsequently in four additional health care journals. It has now been published in five languages.

  In the winter and spring of 1990 an annotated study edition of the guidelines was produced and distributed to 152 discussion groups that met in 15 countries for systematic study and comment. Those discussion groups included hospital ethics committees, hospice teams, two groups of health care economists, several groups of health care professionals (nurses, social workers, hospital chaplains, administrators, and doctors), and there was a strong representation of groups of interested people from the 'grass roots' of several societies. A total of 1450 people were involved in the 152 discussion groups. The 94 groups from the US met in 23 different states, and the 58 foreign groups met in 14 countries (Denmark, Scotland, Israel, Sweden, Australia, Malaysia, Guinea, the Netherlands, England, Norway, Canada, India, Colombia and New Zealand). The groups spent a total of 731 hours discussing the study edition, with average length of discussion per group equalling 4.9 hours. The average size of the discussion groups was nine members. Thirty per cent of the participants were doctors; the other seventy per cent were from a variety of professions and vocations.

  Each discussion group sent a report documenting its reaction to, and its suggestions for, the guidelines. In addition 749 participants returned individual participant-evaluation forms. These responses were tabulated and summarised for the delegates to a third working conference: The Appleton International Conference: developing guidelines for decisions to forgo life-prolonging medical treatment which met once again in Appleton in May of 1991 to respond to the suggestions, comments and challenges from the 152 discussion groups and to revise and refine the guidelines in light of those suggestions and comments.

  The 24 delegates to this third conference, 20 of whom had participated in the writing of the original guidelines in 1988, were from nine different countries. They met for three and a half days in both plenary and working-group sessions, discussing the comments from the study groups, responding to the criticisms and suggestions and revising the original to produce this present document.

Notes

(1) The original version of the guidelines was published with the following note:

Despite the wide variety of medical cultures represented, the delegates want to acknowledge that the perspectives included in this conference represented only a small fraction of the world population and did not include perspectives from Eastern Europe, the Orient, the third world and several other 'western' nations, both European and American. It is our hope that discussions provoked by the publication of these guidelines will lead to contributions from many of those perspectives. [page 4:] During the study-group meeting-phase of the Appleton Project efforts were made to facilitate such contributions. Study groups were convened in Canada, Colombia, Guinea, West Africa, India and Malaysia, and new delegates were invited from India (B N Colabawalla) and Malaysia (dato' Gurmukh Singh) to participate in the third working conference. Due to emergency surgery, dato' Singh was unable to attend the conference. However, both his written report of the Malaysian study groups and Dr Colabawalla's personal contributions were influential in our deliberations. The responses from the study-groups from the previously unrepresented countries, both from groups of practising clinicians and from groups of non-medical professionals, indicated significant divergence from the 'consensus' of the Appleton group at several points: viz, agreeing with the published dissent in Part I, guideline 5 (euthanasia) and in Part II, guideline 13 (persistent vegetative state), and expressing the feeling that 'respect for human life' should be explicitly stated as a principle in the Preamble. Even more striking than these divergences (which paralleled the points of maximum divergence in our own group), were the very considerable areas of significant agreement, including 1) the desire to underscore the degree to which the substance of the guidelines should be intended as a model on which discussions in local medical cultures could be based rather than as universalisable truths and 2) the value of continued communication both across and within medical cultures about what is at stake in these decisions. The comments and suggestions from these previously unrepresented countries were extremely helpful in our deliberations at the final conference and constructively influenced many of our revisions. It is our hope that efforts at communication and discussion regarding these important matters continues. (John M Stanley) [Return]

Preamble: Ethical background

In caring for patients, doctors and other health care professionals, as individuals and as representatives of their professions, should act with respect for human life (1) and with integrity (2) in providing medical treatment within certain norms of care and concern.

  Despite widely diverse national , cultural, religious' and political traditions, four prima facie moral principles summarise these norms (3 , 4, 5)

1. Autonomy. All persons have a prima facie moral obligation to respect each other's autonomy insofar as such respect is compatible with the respect for the autonomy of all affected. This principle requires respect for patients' deliberated choices made in accordance with their own values, consciences, and religious convictions. To effect such respect, it is the responsibility of health care professionals to share information honestly and fully with patients, to enable them to collaborate fully in determining the course of their care, and to maintain patient confidentiality. While respect for the autonomy of health care professionals is no less important (and no more important) than respect for the autonomy of patients, professional integrity requires that the application of the health care professional's autonomy always include allegiance. to a norm of practice which requires service to patients and which assumes that the interest of his or her patients is always the health care professional's paramount concern.

2. Non-Maleficence (Avoid harm). All persons have a prima facie moral obligation not to harm each other. The infliction or risking of harm to others, including the risks of medical practice, can only be justified by the pursuit of other moral values — principally, in the case of medical practice, benefits to patients sufficient to outweigh the harm (6).

3. Beneficence (Do good). All persons have a prima facie moral obligation to benefit others, perhaps even especially those in need. Health care providers acknowledge a particular obligation to benefit their patients and to do so with minimal harm (7).

4. Justice. All persons have a prima facie moral obligation to act justly or fairly to others. Membership in society confers benefits, rights, and opportunities; however, in the public interest, such membership necessarily limits individual autonomy and entails obligations. Interpretation of the precise nature and extent of these rights and obligations is highly dependent on both cultural and individual perspectives. Nonetheless all societies bear the obligation to advance the general welfare of their citizens through social institutions and policies.

These four principles or values do not comprise a single ethical theory. Indeed, they often conflict and require interpretation and balancing. The four principles are given different weight in different cultures, and some cultures would wish to add additional principles or values. Moreover, substantive disagreements exist within cultures about both the scope and the relative weights of the principles. And the analysis of specific circumstances in individual cases may enhance the understanding of both ethical and cross-cultural perspectives not directly derived from the four principles. Nevertheless, acknowledgement of these principles provides a valuable cross-cultural basis for medico-moral analysis, discussion, and decision-making.

Notes to the preamble

(1) All of the principles in the preamble reflect respect for the dignity of human life. The extent and scope of this respect is expressed in the application of the four principles. In applying respect for human life to specific cases it is important to remember that the prolongation of life, without consideration of the quality of life, may not be evaluated as being in a patient's best interest, and may not in some cases be compatible with respect for the dignity of human life. [Return]

(2) This document begins with a statement about the importance of professional integrity to remind us of the proper function of medicine in a humane society.

The earliest statement of professional integrity was in the Hippocratic oath. The importance of the Hippocratic oath was that it identified a group of people who were [page 5:] prepared to submit themselves to a certain norm. By doing so, they constituted themselves as practitioners of whom certain things could be expected. Once this has happened, a society has an identifiable body of practitioners in whom certain privileges can be invested in return for the service their norms dictate. The oath and the professional integrity it commends allow one to say that certain standards have been agreed to, so that departures from those standards can be regulated by the body of practitioners concerned. On the basis of that implicit undertaking, they can do things which ordinary citizens should not do (such as run the risk of causing dangerous harm to others in order to attempt to secure certain goods). Without such standards no means exist to distinguish what will be regarded as acceptable when done by certain members of society (doctors) but not if done by others. It is expected intuitively that the kinds of things doctors are allowed to do should be regulated by the considerations of benefit with minimum harm that are enshrined in the oath.

In modern society the oath is not often a taken, but the presumption that the medical profession will obey certain norms, and on that account can be trusted, remains central to medical practice as a social institution and a relationship between doctor and patient. What also remains in place is the presumption that the techniques of medical practice will not be taught unless the person learning them agrees to submit to the norms regulating this body of practitioners. Only thus can society protect itself against the illegitimate, malintentioned, or cynical use of medical techniques. In our society medicine holds hopes of great benefits but also risks of great harm.

It is, therefore, vitally important that it be regulated, so that the way it is practised puts the welfare of the patient in the highest place in medical decision-making. If the medical profession holds fast to the notion of a profession and its integrity, it maintains this standard and so guards both patients and society against the unscrupulous use of biomedical technology which is not of proven benefit. That doctors owe allegiance to a norm of practice according to which they serve patients and that the best interests of their patients must always be their paramount concern follows from the concept of professional integrity. (Grant Gillett) [Return]

(3) These four principles, though individually ancient, were rearticulated in the bioethics literature in the late seventies by the philosopher Thomas Beauchamp and the theologian James Childress, Principles of biomedical ethics (Oxford: Oxford University Press, 1978 [2nd ed, 19831); they were applied specifically to decisions to forgo treatment by the President's Commission on Forgoing Lifesustaining Treatment (Washington, DC: USPGO, 1983; 83-600503), and are discussed by Raanan Gillon, Philosophical medical ethics (Chichester: John Wiley and Sons, 1986). [Return]

(4) Appeal to the four principles proposed by Beauchamp and Childress has characterised most of the best work in US medical ethics between 1970 and the present and, more recently, has begun to influence European work. To a large extent these principles capture what it has meant for medical ethics to emerge as an academic discipline in its own right, out of its origins as intraprofessional, authoritative -rules and reflections.

Nevertheless, the authority of these principles for a document of rules and guidelines such as this one should not obscure the lively debate that now ensues over whether such principles can exhaust the moral content of medicine to the extent their advocates have claimed. This debate, in turn, occurs against the backdrop of a broad debate in moral philosophy generally over whether ethics can be reduced to a set of rules to govern individual behaviour. One suggestion holds that only by turning attention from the isolated individual to the community can medical ethics make progress. Another is that we must replace rules-language with virtue-language and return to the task of addressing questions of character and integrity, which a rules-approach tends to ignore. A third suggestion is that we must ask, not how each of us as individuals can know that our ethical position is correct, but instead how groups or teams can reach workable compromises in the face of continued deep disagreements about moral principles. Finally, it may be argued that the four moral principles discourage discussion of issues of power and work-routine, without which moral matters in health care are incompletely characterised. Clearly these suggestions overlap to a large degree, and the fact that they are being raised suggests that medical ethics remains a vibrant field of inquiry which can hope for substantial expansion and progress in future years. (Howard Brody) [Return]

(5) A complementary, and occasionally an alternative system to the 'principles' approach is the 'casuistry approach'. Clinicians as well as certain religions may prefer the meticulous analysis of each individual case, taking into account all its specifics and nuances, and 'working up' towards the relevant principles, rather than applying broadly defined principles to dissimilar cases. (Avraham Steinberg) [Return]

(6) To a medical practitioner the principle 'do no harm' (primum non nocere) does not mean that one should never inflict or risk any harm at all. Medical practice is unthinkable without a willingness to risk harm to patients. It means that any harm risked or inflicted would have to be justified by reasonable expectation of benefits to the patients sufficient to outweigh the harm. Medical practitioners generally see this principle as linked to the principle of beneficence. Indeed, most would say they are two sides of the same coin. See also Grant Gillett's note on integrity above. [Return]

(7) 'Minimal harm' in this context means as little harm as is necessary to achieve the desired benefit. [Return] [page 6:]

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Part I: Decisions involving patients who have decision-making capacity or patients who have executed an advance directive before losing this capacity (1)

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In the context of the norms of medical practice summarised in the preceding preamble, five guidelines are suggested concerning requests from patients with decision-making capacity or from patients who have provided advance directives, oral or written, before losing their decision-making capacity. These guidelines fall into three categories.

Guidelines

REFUSAL OF TREATMENT

1. If a patient who has decision-making capacity rejects treatment that the doctor believes to be in the patient's interests, especially where such treatments are life-prolonging (2), the doctor should seek to explore the patient's reasons for such refusal and seek to correct any misunderstandings. However, a doctor should not impose treatment if rejected (even if the treatment is potentially life-prolonging) and should explore alternatives that might be acceptable to the patient, including transfer of the patient to the care of a doctor or institution prepared to respect the patient's wishes. In all cases, including those where a patient's refusal of a specific treatment is respected, the doctor and the health-care institution have the obligation to continue to offer supportive care and treatment for pain and suffering (3, 4, 5).

2. Where a patient has lost the capacity to make decisions but has given a valid advance directive to refuse treatment and/or has appointed a representative to make decisions about refusal of treatment, such directives and decisions should be respected by doctors and other health-care workers (6 , 7).

REQUESTS FOR TREATMENT, INCLUDING LIFE-PROLONGING TREATMENT

3. Doctors also have a strong prima facie obligation to respect patients' requests for life-prolonging treatment. However, certain qualifications are relevant:

(a) Doctors are not obliged to provide physiologically futile treatments (ie treatments that cannot produce the desired physiological change). Where a doctor considers a life-prolonging treatment not to be physiologically futile, but nonetheless 'futile' in another sense of the word (8) because of the low probability of success or because of the low quality of life that would remain, then decisions about the withholding or withdrawal of such treatments should be made in the context of full and open discussion of the nature and extent of the 'futility' of the treatment with the patient or the patient's representative (9);

(b) If a requested treatment entails, according to the norms of medical practice (10), loss of function, mutilation, or pain disproportionate to benefit, the doctor is not obliged to provide it;

(c) If a doctor has a conscientious objection to a requested treatment (11), that doctor is not obliged to provide it. The doctor should explain all treatment options and his or her position regarding them. If the patient wishes, the doctor should arrange an orderly transition to another doctor of the patient's choice;

(d) Scarcity of resources may sometimes require overriding a patient's request for a life-prolonging treatment (see Part IV) (12).

4. Where a patient without decision-making capacity has previously given a valid advance directive requesting life-prolonging treatment(s) and/or appointed a representative to make such requests, doctors have a strong prima facie obligation to respect such requests. The same qualifications apply here as in guideline number 3 above.

REQUESTS FOR INTERVENTIONS INTENDED TO TERMINATE LIFE (VOLUNTARY EUTHANASIA)

5. Patients having decision-making capacity who are severely and irremediably suffering from incurable diseases sometimes ask for assistance in dying, Such requests for active termination of life by a medical act which directly and intentionally causes death may be morally justifiable and should be given serious consideration. Doctors have an obligation to try to provide treatment and care that will result in a peaceful, dignified, and humane death with minimal suffering. There is a particular obligation upon the doctor confronted with a request for euthanasia or other assistance in dying to undertake a scupulously careful enquiry into the circumstances of the request to see if alternative courses of action might be helpful in removing or alleviating the cause or causes that led to the request. Attention should focus upon [page 7:]

(a) physical distress, which might be removed by better palliative treatment,

(b) the possibility of significant mental depression, which might be susceptible to treatment, and

(c) the perception of being an undue burden upon family members and other carers, which might be helped by counselling and more adequate support facilities.

It is recognised that participation in doctor-assisted dying for those patients who persist in their wish to die in spite of all measures to reduce their suffering will reflect different cultural and societal norms in individual countries (13). Whether statutory legalisation of the intentional termination of life by doctors is desirable is the subject of continuing international debate (14 , 15, 16).

Dissent to Guideline 5

Requests for euthanasia by competent patients severely and irremediably suffering as a result of incurable disease may be understandable, but are not morally justified. (Shimon Glick, Arnold Rosin, David Schiedermayer and Avraham Steinberg)

Statutory legalisation of the intentional killing of patients by doctors is against basic morality as well as against the public interest. (Shimon Glick, Arnold Rosin, David Schiedermayer, Avraham Steinberg and Jan-Otto Ottosson)

 

Notes to Part I

(1) The term 'decision-making capacity' was chosen instead of 'competent' because the latter has different meanings, legal and non-legal, in different countries. A patient should be assumed to have the capacity to make a treatment decision when he or she can understand the relevant information. reflect on it in accordance with his or her values, and communicate a decision to caregivers The Hastings Center monograph: guidelines on the termination of life-sustaining treatment and the care of the dying. Briarcliff Manor, New York: Hastings Center, 1987: guideline 23. 'The more harmful to the patient his or her choice appears to be, the greater the level of certainty the professional should have about the assessment of capacity' (guideline 133 of the same monograph). [Return]

(2) Examples of 'such treatments' could range from surgery or chemotherapy for cancer to artificial feeding and hydration for end-stage multiple sclerosis or renal dialysis for a quadriplegic. [Return]

(3) The question of possible transfer of patients refusing life-prolonging treatment is fast becoming a key issue for discussion in the United States. One view is that a patient should not have to be transferred from one health-care institution to another to be able to have his or her basic human rights respected — especially if marked personal inconvenience or emotional suffering is involved in such a transfer. The essential principle of the right of the patient or surrogate to refuse life-prolonging treatment, including nutrition and hydration, has been so widely accepted in US law and ethics that institutions have little basis to claim that honouring such a refusal would intolerably violate their own moral values and moral integrity. Recent US court cases have unanimously held that patient transfers are inappropriate in such instances. (What has not yet been tested in US courts is the right of an institution to announce in advance of patient admission that certain sorts of treatment refusals will not be honoured in that institution for moral reasons. Some passages in some court decisions suggest that an institution adopting this stance, openly stated in advance, would be allowed to insist upon transfer if the specified treatment were refused.)

Another view is that transfers between institutions may be indicated because different kinds of institutions (such as acute-care hospitals, intensive care units within hospitals, nursing homes, and hospices) habitually and routinely provide very different sorts and styles of care for similar diagnoses and conditions. Among the documents on medical ethics, the Hastings Center guidelines, p24 (see Notes to Introduction, number 3) goes farthest in recognising transfer and no-transfer policies as crucial to operational medical ethics. (Howard Brody) [Return]

(4) There is an emerging consensus in writings from the USA that is in favour of respecting autonomy, almost without regard to the circumstances. In contrast, the position in Britain is less clear-cut and is probably reflected quite accurately in the British medical Association Report on euthanasia (1988). The report received adverse criticism: see for example Higgs R (British medical journal 1988; 296: 1348) who says '... when someone has decided that he or she wishes to die we are not entitled to jump to the conclusion, as does the report, that such "expressed wishes ... make doctors wonder about the patient's competence as a decision-maker"'.

Unlike the BMA euthanasia report, the British report The living will: consent to treatment at the end of life, (Age Concern, England and the Centre of Medical Law and Ethics, King's College, London; London, Edward Arnold, 1988) states that '... the physician should not strive to regard an irrational decision as incompetently based' and '... the physician should always be aware of the real possibility that a patient's values and goals may differ from his and so he should not necessarily evaluate an unreasonable or potentially damaging decision by the patient as stemming from an incompetent lack of understanding. A mere decision that is regarded as unreasonable should not in itself lead to a finding of incompetence'. The British living wills report analyses in detail the advantages and disadvantages of advance directives, with and without durable powers of attorney, and defines the alternative means of introducing living wills in Britain and the extent to which legislation may or may not be desirable. The acceptability and authority of advance directives is accorded clear significance in The Appleton Consensus, but again the British Medical Association report on euthanasia is somewhat equivocal, principally on the grounds of interpretation of wishes and the change which may take place in value judgements with increasing age. The BMA position is summarised thus: 'Any attempt to treat advance declarations as more than an indication of a patient's wishes where there are difficult decisions to be made is inappropriate. At times a judicious medical paternalism may well he the best and most realistic way to achieve a good outcome where the situation is not quite as the declarer might have envisaged it'. Further equivocation follows thus: 'But a certified and settled wish by a patient [page 8:] should be treated with the utmost respect'. (George Robertson) [Return]

(5) In some religious traditions (for example Orthodox Judaism) the right to refuse clearly lifesaving treatment is not recognised as valid and, like suicide, would not be morally acceptable. (Shimon Glick) [Return]

(6) Advance directives are always less conclusive evidence than the contemporaneous statement of a competent, informed, and autonomous person. The advance directive substitutes for the latter situation only to the extent that the patient, when competent, was well-informed, acting reasonably freely, intending the instruction as now interpreted, and envisioning a situation reasonably similar to the one now faced. These concerns can be met fairly commonly, since ordinary persons giving advance directives are either giving thoughtful but broad instructions or are envisioning a future event that is known to be likely in that person's situation. One function of advance directives, naming a surrogate, is precisely to grant to a particularly trusted other person a fairly broad range of discretion in interpreting treatment-oriented directives. While the moral standing of directives in any form is equivalent, the seriousness of purpose, precision of language, and reliability of written advance directives justify policies which allow more extensive reliance on documented directives than on recollection of spoken statements. (Joanne Lynn) [Return]

(7) Due to the shortcomings and pitfalls of advance directives, and due to occasional difficulties in interpretation and even possible misinterpretation of such documents—advance directives should be considered and taken into account by doctors and other health care workers, but not automatically implemented. (Avraham Steinberg) [Return]

(8) The delegates are distinguishing here between two types of 'futility': physiological futility and common-sense futility. Narrowly understood, medical treatment is futile if it cannot produce its physiological effect. Continuing to provide heart stimulants and chest compressions during cardiopulmonary resuscitation (CPR) after the heart could no longer physiologically respond to the stimuli would be an example of physiologically futile treatment. An example of a broader, common-sense notion of futility would be continuing to administer heart stimulants and chest compressions after a time when, even if the heart responded, the condition of the patient would be brain death or a persistent vegetative state. Howard Brody's study note below outlines the different ways the term futility can be understood and highlights the areas of controversy. [Return]

(9) Part of the debate on futility hinges on the ambiguity of the term. For example, in recent articles on CPR in the US, 'futility' has been taken to mean at least three things: a) resuscitation will fail to restore heartbeat; b) resuscitation will restore heartbeat but only in a state of permanent unconsciousness; c) resuscitation will restore heartbeat and consciousness, but the patient will not survive long enough to leave the hospital. An important question is what empirical probability is required before any of these three categories of futility would apply.

The ethics of allowing doctors to withhold requested therapy because they regard it as futile can be viewed in four categories in order of increasing controversy: 1) the treatment is likely to fail to achieve its physiological objective; 2) the treatment may achieve its physiological objective but with consequences for the patient deemed unacceptable by the medical profession (mutilation, loss of function, or pain); 3) the treatment may achieve its physiological objective but is likely to produce untoward consequences deemed unacceptable by the vast majority of people; 4) while the treatment may produce results which in the patient's eyes seem to be beneficial proportionate to the burdens imposed, in the doctor's judgement the treatment was 'futile' in the sense that the burdens would far outweigh the benefits. I believe that almost all would agree that the doctor in situation 1) is justified in withholding treatment on grounds of futility; whereas in situation 4) it is wrong both to withhold treatment and also to use the word 'futility' to describe what is happening. The interesting controversy, if I am correct, applies to situations 2) and 3). These international guidelines approve of treatment refusal in situation 1) and acknowledge that some situation 2) cases may also justify withholding treatment, although a higher level of consultation and approval is required. I believe that it would be appropriate to consider at least some applications of situation 3) under the heading of 'futility', but others might well object that that would constitute an intolerable throwback to the days of unbridled doctor paternalism. (Howard Brody) [Return]

(10) The phrase 'norms of medical practice' refers to the norms that would generally be accepted by a doctor's peers in his or her local medical community. Examples of treatments that would fall outside the norms of medical practice include amputation of a healthy limb for the purpose of avoiding military service or female circumcision. [Return]

(11) Examples of such treatment could include therapeutic abortion or, in medical cultures where it is legal, assisted suicide. [Return]

(12) This statement merely acknowledges the fact of scarcity and the consequent necessity of rationing life-prolonging treatment at some point. It would be unthinkable that in a condition of scarcity a patient could for personal or religious reasons demand to be maintained in an ICU as long as technologically possible. Precisely what should be considered when drawing such lines is left, at this point, to Part IV of this statement. [Return]

(13) Such participation could involve a number of acts on the part of health-care givers that are differently perceived and differently sanctioned in different cultures: including, but not limited to: a) counselling about methods of ending one's own life, including, when available, referral to information sources; b) prescribing and/or counselling about the use of drugs for ending one's own life (doctor-assisted suicide); c) providing a sustained drug-induced coma; d) acting with the deliberate intention of causing the death of the patient. [Return]

(14) See the dissent to this guideline registered by Shimon Glick, Arnold Rosin, David Schiedermayer, Avraham Steinberg and Jan-Otto Ottosson. [Return]

(15) Despite evidence of an increasing level of public opinion in favour of voluntary euthanasia (certainly this is true of the USA and Britain), all countries other than the Netherlands continue to resist efforts to give doctors legal immunity if they accede to a patient's request for euthanasia. There is also evidence, however, that a significant number of doctors are prepared to state anonymously that they have on occasion taken active steps to hasten death (Kuhse H, Singer P. Medical journal of Australia 1988; 148: 623).

During informal discussion at the Appleton Conference, [page 9:] a few delegates formed the opinion that euthanasia, judging by polls of public and medical opinion, was in the ascendancy. In view of the constant unwillingness of legislatures to endorse euthanasia, evidence of its increasing acceptability is cause for some concern. The development of euthanasia 'through the back door' may indicate a growing frustration with advisory bodies which fail to provide clear guidelines on acceptable alternatives to euthanasia (including non-treatment) and a dangerous trend towards acting in the face of existing legislation.

The more rigorous a and thoughtful application of nontreatment decisions together with the sustained promotion of complete symptom relief in the terminally ill (come what may) could provide an effective alternative strategy to active, voluntary euthanasia. Presumably, much of the public interest in euthanasia stems from the perception and belief that there is no effective medical alternative. (George Robertson) [Return]

(16) Doctors and others who urge social-policy change to allow direct and active killing have the responsibility to weigh the risks that such a policy may pose for those who are poor, disabled, inarticulate or otherwise devalued. It may well be that the risk of cultural coercion upon such persons to accept being killed is so great that the social policy change cannot be justified. (Joanne Lynn) [Return] [page 10:]

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Part II: Decisions involving patients who have lost the capacity to make decisions and who have not executed an advance directive (1)

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These guidelines pertain to situations involving patients who no longer have decision-making capacity, who left no advance directive, and who have at least two potential future courses of life depending upon a treatment choice. That choice may be either: 1) whether to forgo rather than use a particular treatment, or 2) which of several possible alternative treatments should be used.

Guidelines

DOCTORS' RESPONSIBILITIES

1. Full medical prognosis The doctor has the responsibility to discern, to the extent possible, the patient's current medical and social situation, the likely future course of the disease or condition in the absence of intervention, the full range of potentially useful interventions, and the likely course with each of these.

2. Patient's values history The doctor also has the obligation to ensure insofar as possible that the patient's own values and preferences in regard to the current situation are ascertained.

3. Duty to inform Information about all alternatives that might be beneficial to the patient should be shared with the patient's family. The term "family' should be understood to include those persons who are available and competent, have been involved with and concerned about the patient, are knowledgeable about the patient's values and preferences, and are willing to apply the patient's values to making the decision. This term might well include persons not related to the patient and might exclude relatives (2).

4. 'Substituted judgement' decisions If the doctor can determine that a particular plan of care, including the forgoing of a particular treatment, is clearly most in accord with the patient's values and if the patient's family and direct care-givers concur, then that plan of care should be pursued (3).

5. 'Best interests' decisions If the comparative merits of the alternative futures, in the light of the patient's values, do not clearly indicate which plan of care the patient would have preferred, then the doctor, in consultation with the family, if available, and other direct care-givers, should identify the plan of care that would most generally be thought to advance most such patients' interests; and, if family and direct care-givers concur, it should be implemented.

Ordinarily, for example, persons would want to preserve identity, be able to maintain independence and control, be able to interact with others, have pleasurable experiences, avoid pain and suffering, and avoid being a severe burden upon others. Normally treatment must be justified in these terms (4 , 5 , 6).

CONFLICT BETWEEN DECISION-MAKERS

6. If there is a conflict between the responsible doctor and an involved care-giver or family member as to which course of care should be pursued, then procedures must be in place to ensure adequate attention to resolving this discord. Counselling, discussion, consultation, and other informal interventions may bring about significant degrees of agreement (7). If the person(s) who disagree(s) with the doctor's recommendation is emotionally and socially distant and there are others who are emotionally and socially close, then the doctor may disregard the claims of the more tangential party. However, if the disagreement is with someone close to the patient, the doctor should not generally override that view without resorting to more formal conflict resolution processes. These might include intra-institutional authorities (for example, ethics committees, or department heads or administrators) or extra-institutional authorities (for example, the courts). Institutions and programmes of care should have available reliable and responsive procedures that ensure that all relevant considerations are given their due (8).

SOCIALLY ISOLATED PATIENTS

7. If the patient has no family or friends, the doctor has an especially weighty obligation to ensure that decisions are made well. Not all such patients need personal advocates (for example, guardianships, ombudspersons, public officials), but the doctor should consult widely with other direct care-givers, consultants, and relevant religious advisers. Some cases may merit formal review either by intra-institutional or extra-institutional authorities before the decision is made by the doctor. The need for this prospective review should reflect the degree to which [page 11:] the decision is one with serious and irreversible effects, one with unavoidable uncertainties, one concerning a patient of a group with a history of being treated in a discriminatory manner, or one which is without substantial precedent.

RESTORATION OF DECISION-MAKING CAPACITY

8. When it is reasonable to believe that a patient could regain the capacity to make decisions, as far as possible a decision should be delayed in order to allow the patient the opportunity to make the decision for himself or herself.

FUTILE TREATMENT

9. A treatment that cannot reasonably be expected to achieve even its physiological objective is physiologically futile and need not be offered or provided if requested (9).

CARE-PLAN CONSIDERATIONS

10. Plans of care must be reasonably comprehensive, including considerations of what treatments to utilise, how long to employ them, and when and how to stop. Planned trials of one or more courses of care for individual patients are often very useful in delineating the likely course of the patient's response to treatment and should be encouraged. Withdrawing treatment already initiated should not be regarded as any more problematic, ethically speaking, than withholding such treatment initially. Indeed, often, some medical evidence is clearer after a trial of treatment, and withdrawing ineffectual or harmful treatment then has even more justification than would have withholding the treatment originally (10, 11, 12).

QUALITY REVIEW

11. The decision-making process must be documented and justified in writing to facilitate regular review by the members of the medical profession and others who may be involved in quality assurance processes.

ACTIVE EUTHANASIA (13)

12. Intervention with the primary intention of causing death (as distinguished from forgoing treatment that is deemed inappropriate) has no place in the treatment of permanently incapacitated patients. However, vigorous treatment to relieve pain and suffering may well be justified, even if these interventions lead to an earlier death.

PERSISTENT VEGETATIVE STATE (PVS)

13. The patient who is reliably diagnosed as being in a PVS has no self-regarding interests. Consequently, unless a previously expressed advance directive requests it, there is no patient-based reason to continue life-sustaining treatments, including artificial hydration and nutrition. It is unkind to allow unrealistic optimism to he sustained and it is unfair to allow the prolonged consumption of societal resources in support of such patients beyond a period of education and adjustment for the family (14 ,15, 16, 17, 18).

Dissent to guideline 13

While it may be true that the patient with PVS has no 'self-regarding interests', it is not so obvious that no other moral interests are at stake; for example, the inherent value of life. Since patients with PVS clearly do not suffer from their state, their quality of life cannot be characterised as 'harmful' to themselves. We, therefore, cannot accept a categorical statement which rules out life-sustaining treatments, especially hydration and nutrition.
(Shimon Glick, Joanne Lynn, Thomas Murray, Arnold Rosin, David Schiedermayer and Avraham Steinberg)

Notes to Part II

(1) All decisions involving patients who are incompetent should be fully documented and available for review. (James Snyder) [Return]

(2) While this definition of family is strictly drawn to help ensure decision-making compatible with the patient's values, care should be taken not to abuse the strictness of this definition as a way to rationalise decision-making based on the doctor's preferences. Operationally this might be accomplished by deciding, where possible, who should count as 'family' before specific questions about the patient's values are asked. (James Snyder) [Return]

(3) In this guideline (number 4) and in number 5 which follows, delegates are making a distinction between decisions based upon a 'substituted judgement' and those based upon a 'best interests test'. The former, articulated in this guideline, is an effort to reconstruct a first-person judgement on the basis of information from the family and the values history that the doctor has recovered (guideline 2). It is useful to re-examine Joanne Lynn's note on advance directives in light of this distinction. See note 6, Part I. [Return]

(4) Some of the delegates argued that in situations of real doubt as to whether a proposed treatment is in the patient's interest, the choice should be to withhold that treatment (the common bias toward treatment — whether resting on a technological imperative or a vitalist assumption — being unjustified). Others felt that although doctors should never treat merely because a treatment is available, in some cases where it was not clear what the interests of the patient were, prolonging life of a quality that most patients would accept would be justified. All delegates rejected the simple vitalist assumption that life itself is of paramount value irrespective of its quality and that, therefore, prolonging life is always in a patient's interest. [Return]

(5) The desire to live should be included among the 'ordinary' desires of persons. (Shimon Glick) [Return]

(6) Normally, treatment should be thought of in these terms, but some of these terms are not easily applied to ill or permanently disabled persons. When in doubt, treatment should be given, although it may be eventually modified to a sub-maximal degree as the clinical prognostic profile becomes clearer. (Arnold Rosin) [Return]

(7) Examining the rationale for the statements of family, friends, and care-givers is an important part of this [page 12:] process, including consideration of the possibility of conflicts of interest with the patient. Care should be taken, however, to guard against discounting the views of disagreeing parties merely because those views are disagreeable or inarticulate. [Return]

(8) In general intra-institutional authorities should be preferred over extra-institutional authorities and courts should be a very last resort. Not only are legal procedures prolonged and expensive, but health-care workers, family members, and social-service guardians will often 'give up the fight' to avoid a court procedure. A local judicially sanctioned committee (which would probably be the same kind of group the judge would rely upon anyway) could be given decision-reviewing authority. Less delay and expense would result. Courts could still be appealed to in cases of unreasonable conflict as a very last resort. (Fredrick Abrams) [Return]

(9) For cases where treatment would not be physiologically futile, but nonetheless futile in the context of the whole condition, the same advice should apply as in Part I, guideline 3a. See notes 7 and 8 to Part I. [Return]

(10) For a more complete discussion of this issue, see the Report of the President's commission for the study of Ethical Problems in Medicine and Biomedical and Behavioral Research: deciding to forgo life-sustaining treatment: a report on the ethical, medical, and legal issues in treatment decisions: Washington, DC: USGPO, 1983; 83600503. [Return]

(11) It should be noted that some cultures still strongly favour withholding treatment initially rather than withdrawing treatment after it is in place, in opposition to the suggestion in this guideline that withholding and withdrawing treatment are equally accepted and that occasionally withdrawing is even more justified. (Avraham Steinberg) [Return]

(12) As understood by most delegates, the justification for the consensus view on this issue is that the purpose of trying to use life-sustaining technologies is to provide net benefit-over-harm for the patient. If it is clear that this cannot be achieved, then the technology should be withheld. If it is not clear whether a particular technology could achieve this for a patient, then a trial of that technology should be instituted until it becomes apparent that net benefit-over-harm for the patient cannot be achieved, at which point the technology should be withdrawn. [Return]

(13) The Dutch definition of euthanasia, which includes the phrase 'on the request of the patient', precludes the use of the term 'euthanasia' in this section of the guidelines (ie decisions regarding permanently incapacitated patients who have not executed an advance directive). [Return]

(14) The PVS is characterised by a functioning brainstem combined with the irreversible loss of neocortical functions. A patient in a PVS has irreversibly lost all powers of cognition and sentience. The diagnosis is not nearly as easy to make as the diagnosis for whole-brain death (which includes the death of the brainstem) but, given sufficient time and knowledge of the cause of the destruction of the neocortex, the diagnosis can be made with a high degree of certainty. Neurologists may differ about the length of time required for diagnosis. A prolonged period of recovery may follow head trauma especially in children, but to date there has been no evidence of any reliably diagnosed PVS patient recovering both cognitive and motor functioning after three months — in those cases where the cause of the destruction of the neocortex was lack of oxygen to the brain. [Return]

(15) 'Reliably diagnosed' does not sufficiently capture the likelihood of error in making the diagnosis. Note 14 acknowledges that the diagnosis of PVS is 'not nearly as easy to make as whole-brain death' yet the rate of error and confusion for the latter is remarkably high. See Youngner S J, Landefeld C S, Coulton C J et al. Brain death and organ retrieval: a cross-sectional survey and knowledge among health professionals. Journal of the American Medical Association 1989; 261: 2205. See also Wikler D, Weisbard A J. Appropriate confusion over brain death. Journal of the American Medical Association 1989; 261: 2246. (Norman Fost) [Return]

(16) Some delegates argued that continued treatment of PVS patients can be justified by the benefit such treatment would offer to others (for example, to parents or close relatives). Others argued that a PVS patient should never be treated solely for the benefit of others. Both deontological and utilitarian arguments [see note below] were adduced to support this contention. However, a counter-argument offered was that, since withdrawal of treatment for patients in a PVS was predicated on the assumption that there was no 'person' left to treat, it would be inconsistent to use an argument based on personal dignity to prevent the withdrawal of treatment for that PVS patient for the benefit of the family or others. Other delegates argued further that the continued treatment of a PVS patient for the benefit of others may be justifiable only if such treatment were continued for a short time, for example, until the family has had a reasonable amount of time to recognise the hopelessness of the situation. That treatment be continued for a short time only rests on the assumption that such treatment would possibly deny resources to others. The most prudent policy according to some delegates would be to be permissive on stopping treatment — essentially reversing the burden of proof, requiring good reasons to continue life-support rather than requiring reasons to withdraw it. Other delegates, concerned to defend a sanctity-of-life principle, argued that any withdrawal of treatment from a PVS patient could be a dangerous step down a morally important slippery slope. One delegate felt it was important to leave to the discretion of the doctor the option to continue life-support in rare cases.

Note: A deontological argument is a nonconsequentialist, duty-based argument that a specific course of action is right in itself — as distinguished from being right because of the consequences it produces. A utilitarian argument is a consequentialist argument that the rightness of any action is determined by the balance of good over evil in the totality of its consequences, both intended and unintended. [Return]

(17) See the dissent to guideline 13 by Shimon Glick, Joanne Lynn, Thomas Murray, Arnold Rosin, David Schiedermayer and Avraham Steinberg. [Return]

(18) The views of individuals who have previously expressed a wish to be treated even in a PVS, or whose surrogate requests such therapy because of the beliefs of those individuals, should be respected. (Shimon Glick) [Return] [page 13:]

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Part III: Decisions involving neonates and other patients who have never achieved decision-making capacity

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These guidelines address decisions regarding patients who now lack and have always lacked the capacity to choose for themselves with regard to life-prolonging medical treatment. They are patients for whom no 'substituted judgement' can be rendered, as their present or previous wishes and desires cannot be known. Within this group two further distinctions may be useful: 1) between those who, due to anomaly, illness, or injury, will never develop decisional capacity in the future (such as anencephalic infants, the permanently unconscious, and the severely and permanently incapacitated) and those who can be anticipated, if they survive, to develop decisional capacity to varying degrees, and 2) between those who have a natural or agreed surrogate decision-maker (for example, parents or guardian) and those who lack such a surrogate.

Guidelines

QUALITY-OF-LIFE JUDGEMENTS

1. Regard for the value of life does not imply a duty always to employ life-prolonging treatment for patients in this category. In setting reasonable limits for such treatment, 'third-person' judgements about quality of life are inevitable. Responsible third-person (1) quality-of-life judgements consider, insofar as possible, how the options must appear from the perspective of one in the patient's condition and determine what would most reasonably be thought to count as quality for most such patients (2, 3).

2. Assessing quality of life of these patients for purposes of medical decisions involves weighing the ratio of benefits and burdens (4).

3. In most decisions involving patients in this category, at least five sets of interests may be discerned:

a) the patient's;

b) the surrogate's or family's;

c) the doctor's and those of other care-givers;

d) the health-care institution's (where continuing or withholding treatment may have religious; financial, and legal implications or may expose it to local or national publicity);

e) society's (including both the use of economic resources and the need for research to help future patients).

Normally, the patient's interests should be regarded as paramount. However, difficult moral dilemmas arise when the patient's interests are unclear or clearly conflict with a number of other interests. Societies differ in their preferences for mechanisms for arbitrating conflict in these difficult cases (for example, institutional ethics committee, courts). It is important to remember, however, that in the cases most commonly encountered, the various interests are not necessarily in conflict. Often the patient's own interest is integrally interwoven with the interest of the family and the community. Part of the doctor's clinical wisdom consists of responsibly weighing interests and creatively resolving apparently irreconcilable conflicts (5).

COMMUNICATION WITH PATIENT'S SURROGATE

4. When the patient has a surrogate, the doctor's obligation to the patient also requires certain duties towards the surrogate. These include: a) providing accurate information about the specific clinical problems; b) being honest; c) applying skills in effective communication; d) being willing to answer any questions that are asked; e) being aware of broader social and moral implications.

  To act in a way that recognises these duties to the surrogate is to be worthy of the trust that one hopes the surrogate will place in the doctor, so that a policy of mutual and shared decision-making may be fostered.

DOCUMENTATION OF MEDICAL CARE

5. While the doctor is required to act in a trustworthy manner towards the patient and surrogate, the range of interests that could conflict (see Part III, guideline number 3, above) demands that that same standard of trustworthiness be translated to the level of social review and professional peer relationships. Whatever patterns an individual medical culture may employ to achieve that translation of standards, the process will be enhanced by careful documentation of medical care to facilitate thoughtful review. This documentation should include the careful recording of management plans as well as the internal reasoning that led to them. [page 14:] It should routinely include both medical evidence and the applications of principles which logically lead to the conclusions made about management. Such patterns of careful thinking and careful documentation constitute good clinical practice. How often review occurs and by whom may be a matter of considerable difference among various countries. Adding extra layers of mandatory audit may compromise the quality of patient care without helping to avoid the occasional bad decision (6).

WEIGHING BENEFITS AND BURDENS

6. When a patient lacks a surrogate, little difficulty arises when the benefit-burden ratio clearly favours administration and continuation of life-prolonging treatment. When the benefit-burden ratio is less certain or reversed, a wide variety of mechanisms have been proposed to aid or to review the doctor's decisionmaking (7).

7. The doctor may appropriately withdraw or withhold life-prolonging treatment when, in the view of the informed surrogate and doctor, continued treatment would lead to unacceptable burdens without sufficient compensating benefits to the patient. What counts as a benefit or a burden and the relative ratio between them depends on specific situational factors and, therefore, good decisions in this category of patients demand individual discretion. While these patients possess a vulnerability which makes them frequently subject to social discrimination and stigmatisation, their interests are not protected by the elimination of decisional discretion. On the contrary, a trustworthy doctor and the processes of appropriate review are better means of protecting the interests of vulnerable patients (8), (9).

Notes to Part III

(1) Third-person quality-of-life judgements are made grammatically and logically in the third person — ie judgements about the quality of 'his' or 'her' life as compared with first-person judgements about the quality of 'my' life. [Return]

(2) This form of third-person quality-of-life judgement must be carefully distinguished from third-person quality-of-life judgements based on concepts of minimal social worth, which all delegates felt were not morally justifiable as a basis for medical decision-making in individual cases. [Return]

(3) Some delegates argued that any attempt to consider how options appear to an infant or a person who has never been competent is misguided, since such consideration could only be an inappropriate projection of others' interests onto the infant or other incompetent person. Instead, they argue, judgements in such cases should be based entirely on what others consider to be the patient's 'best interest'. Others felt that the attempt to ascertain insofar as possible 'what most such patients would count as quality' was an undeniable responsibility of decisionmakers in any decision involving quality of life. [Return]

(4) It is recognised, however, that the language of benefits and burdens will not by itself resolve the most difficult dilemmas, since irreconcilable differences can always be re-expressed in terms of a claim that opposing viewpoints overestimate burdens and underestimate benefits, or vice versa, or fail to specify whose benefits and whose burdens are involved. These terms are nonetheless useful to help focus on clinically significant variables and to avoid employing judgements of social worth. [Return]

(5) Delegates acknowledged that there is some distrust of doctors' ability to fulfill such a role, especially if they do so without incorporating the views of others. [Return]

(6) An interesting example of international disagreement arose around the proper mechanisms for audit of these difficult cases. The current trend in the US is toward reliance upon institutional ethics committees (IECs) to ensure a multidisciplinary forum in which all points of view on a controversial issue can be openly discussed. Except for the Netherlands, where a network of IECs has recently been established, the IEC concept is quite foreign to the patterns of professional doctors in Britain and Europe. However, the acceptance of the IEC in the US and opposition to it in Europe may be overstated. In the US doctors objected strenuously only a few years ago to any suggestion that a committee, especially a committee that includes non-doctors, might have a role in advising or overseeing their decisions. Today, many US doctors have altered their views on this, but others remain steadfastly opposed to any any committee-oversight of this type. In Britain and the rest of Europe, many specialised units, such as newborn intensive care units, have assembled multidisciplinary teams of health-workers to manage the day-to-day care of patients; difficult cases will commonly be discussed at length by these teams before a decision is made. The dynamics of this procedure and the outcome may well be almost indistinguishable from IEC review in the US.

A good deal of the movement towards the IEC mechanism in the US in the past decade resulted from government interventions in the form of' the Baby Doe regulations (based on Title II — Amendments to the Child Abuse Prevention and Treatment and Adoption Reform Act of' 1978 [United States Statutes at Large, 98th Congress, 2nd Session 1984; 98,2: 1755]). Given the choice between committee review and no review, most US doctors would opt for no review. But when faced with a choice between committee review within their own institution and review by federal investigators, most US doctors became quite enthusiastic about the former. (Howard Brody) [Return]

(7) A useful summary of these mechanisms appears in The Hastings Center monograph: guidelines on the termination of' life-sustaining treatment and the care of the dying. Briarcliff Manor, New York: Hastings Center, 1987: 24-26. [Return]

(8) It is important to the meaning of this passage to note the precise wording of the guidelines. Vulnerable patients need protection, and it is the trustworthy doctor who provides a part of this protection. This is not to say that if patients and the general public simply trust doctors all will be well. Doctors cannot expect to be trusted unless they act so as to be worthy of trust. Unilateral, closed decision-making is not conducive to trust. Decision-making in a setting where reasons and justifications are recorded and reviewed, so as to make it easy to review the decision process (whether or not a later audit occurs), demonstrates trustworthiness and provides a large part of the protection needed by these patients.

The entirety of Part III of our guidelines represents a rejection of the thinking behind the 'Baby Doe Rules' proposed by the US federal government between 1982 and 1984. This is illustrated strikingly at two places, one [page 15:] of which is our acceptance of quality-of-life judgements regarding seriously ill infants. Underlying the entire Baby Doe initiative was the view that quality-of-life judgements are morally unacceptable and in all cases count as inappropriate judgements of social worth. The counterargument, accepted unanimously by this working group, is that quality-of-life judgements are unavoidable unless one adopts an indefensible, vitalist policy of treating every patient with every available technology until death. Indeed, the very exceptions to treatment contained within the Baby Doe guidelines (irreversible loss of consciousness, treatment that merely prolongs dying, and treatment that is 'virtually futile and inhumane') can readily be shown to contain implicit quality-of-life judgements. The other striking divergence from the Baby Doe approach in our consensus concerns the discretion of doctors and parents in difficult cases. While inevitable wrong decisions will be made from time to time, we felt it unacceptable medical practice and social policy to impose inappropriate treatment in thousands of cases to eliminate bad decisions in a handful. (Howard Brody) [Return]

(9) Commentary on the Baby Doe guidelines in the US ought to include recognition of the current status of the law and the amount of discretion that now exists for US doctors and parents in these cases. US neonatologists widely agree that the law is believed to require over-treatment of infants, and in practice this results in many terminally ill infants receiving inappropriately aggressive care for long periods. This is an inaccurate interpretation of what the law requires. Current US federal law simply mandates that states wishing to receive federal grants for child abuse and neglect services must have in place a mechanism to review suspected cases of 'medical neglect'. No treatment of infants is mandated by that law and no penalties against doctors, parents, or hospitals for non-treatment are contained within the law. (Murray, T H. The final anticlimactic rule on Baby Doe, Hastings Center report 1995; 15: 5-9. See also Angell, M. Handicapped children: Baby Doe and Uncle Sam. New England Journal of medicine 1983; 309: 65944 1). [Return] [page 16:]

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Part IV: Decisions to forgo life-sustaining treatment under conditions of scarcity

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The preceding guidelines have addressed decisions to forgo life-prolonging medical treatments as if scarcity were not a problem. However, growing needs and demands, a growing range of increasingly costly medical options, and limited resources compel us to recognise that decisions, made necessary by scarcity, to forgo treatments that are both desired and beneficial is increasingly a troublesome fact of clinical life and experience (1,2). Many of these decisions will be about patients who are near the end of their lives where options tend to be most costly, marginal benefit difficult to evaluate and decisions final. The decisions may be either necessitated by an absolute scarcity, as when sufficient organs for transplant are simply unavailable, or, more subtly, by a need to choose between competing claims, as when a procedure is considered too costly in relation to its expected benefits and opportunity costs by those who provide the resources and those who manage them.

The first three sections of these guidelines provide guidance regarding conflicts that arise between patient autonomy and professional beneficence, occasionally over-zealous or misguided and sometimes in conflict with other forces. When scarcity is recognised as an element in decision-making, new conflicts are revealed: those between justice and efficiency on the one hand and patient autonomy, now often in concert with professional beneficence, on the other. These conflicts are especially difficult for clinicians because not only are they more complex, touching in significant ways several different levels of decision-making that necessarily mutually affect one another, but they are also uncomfortable, nearly always involving combinations of the most difficult kinds of ethical decisions: those that involve degrees of uncertainty hard to measure or understand and those that require weighing the well-being of an aggregate of individuals (society, community or members of the same health plan) against the well-being of an individual patient.

  To assist in the difficult task of making a responsible treatment or allocation decision at one level that is not counter-productive at another level, the following interrelated levels of decision-making have been distinguished. The guidelines that follow are organised according to these levels.

Levels of decision-making

a) The aggregate level: Decisions at the national or regional level about the allocation of resources to health care as a whole or for particular categories of patients. Decisions at this level shape and define the conditions of scarcity under which subsequent decisions to treat or not to treat must be made.

b) The intermediate level: Decisions about allocation of' existing health-care resources within health-care systems, health plans and institutions such as hospitals, clinics, health centres.

c) The individual level: Decisions within health-care institutions, including those at the bedside, about whether or not a specific treatment should be initiated or continued.

Consideration of justice or efficiency will be dominant at the aggregate and, to a somewhat lesser extent, the intermediate levels; consideration of autonomy and respect for persons and professional integrity and beneficence will be dominant at the individual and intermediate levels. Each of these considerations will have some influence at each level.

  Our deliberations on the particular set of issues that emerge when non-treatment decisions are considered in light of scarcity have centred around two foci:

• Understanding the ethical demands of justice and efficiency under conditions of scarcity and

• Understanding the conflicts between the demands of justice and efficiency and the demands of autonomy and beneficence.

Understanding the ethical demands of justice and efficiency under conditions of scarcity

JUSTICE

A widely accepted understanding of the principle of justice requires equality of treatment for those who are in all relevant respects equal, and permits inequality of treatment only when justified by, and commensurate with, ethically relevant inequalities. Although the 'respects' deemed ethically relevant will vary in different contexts, cultures, groups and individuals, there are four ethical dimensions that should be considered by any society, institution, or individual in [page 17:] determining which respects' are relevant to justify unequal health care:

1) people's health-care needs, including the capacity of people to benefit from treatment,

2) people's rights to control their own possessions, including their accumulated wealth,

3) the effect of the decision to administer or withhold treatment on the total benefit or welfare of the community,

4) the role, if any, that merit and demerit should play in these decisions.

Any just system of allocating scarce medical resources should include respect for these ethical dimensions and consideration of the sometimes delicate balance that must be maintained among them.

1. Need

Health-care need has been interpreted to mean different things by different people (3, 4). Regardless of how health-care need is defined, it is widely agreed that the greater the need, the greater should be the moral imperative that the need be met. Inevitably, however, some needs cannot be met and it is also widely agreed that health care should, in conditions of scarcity, be made available to an individual only if it would contribute positively towards meeting the need of that individual with an acceptable probability of success. When it is not possible to meet the needs of all individuals out of the available resources, respect for the ethical dimension of need would suggest that available resources be distributed in proportion to need. Such distribution will conflict with respect for the ethical dimension of property (see number 2 below) and, depending on which definition of need is used, may well conflict with a desire to distribute health-care resources in a way that maximises the total health-benefit of society.

2. Property

Respect for people's control over their justly acquired possessions or 'holdings', including their income and accumulated wealth, derives from respect for autonomy. Respect for this ethical dimension inevitably conflicts with respect for need. Those in need will want maximal resources to meet their need but those who pay, through systems of private or social insurance, for the provision of medical-care resources for others will want, at the very least, to set reasonable limits to their contributions. Moreover, in a given health-care system, the ability of those in lesser need to purchase scarce life-prolonging resources will inevitably deny life-prolonging resources to others in greater need, but with less ability to pay. This conflict between respect for need and respect for property is a classical conflict in any social-welfare system (5). It is, however, particularly important in health care because individual need and wealth are often inversely related.

3. Total benefit of society

Respect for the total benefit of society would require that whenever medical procedures that could be beneficial to individuals have to be limited because of scarcity, available resources should be allocated among persons so that they produce the greatest overall utility. Such allocation inevitably conflicts with respect for the ethical dimensions of both need and property (6).

4. Merit

Normally, social status and social merit are not appropriate criteria for the allocation of scarce health-care resources. It has, however, been suggested that certain forms of 'demerit' might be responsibly applied to some allocation decisions. For example, people whose needs for care arise in whole or in part from their own 'fault' (for example, from excessive smoking, drug abuse, participation in dangerous sports, or noncompliance with prescribed treatment) could be required to make a larger than normal contribution to the cost of whatever care they receive (7).

EFFICIENCY

The maxim of efficiency follows from the principles of non-maleficence and beneficence. It requires that a given expected outcome of any medical procedure, including a life-prolonging procedure, whether in respect to an identified patient or to groups of anonymous patients, ought to be achieved at the least opportunity-cost (8). The force of the principle derives from the fact that, should the principle not be met, fewer resources would be available, either immediately or at some future date, for accomplishing other desired and ethical outcomes.

At the basic level of the doctor-patient relationship, when resources available to the doctor are limited, efficiency requires that resources ought not to be employed if the benefits to a particular patient are judged to be less than the benefits denied to others for whom the same doctor has responsibility. At higher levels, such as hospital management, the principle is equally applicable in determining the terms, entitlement, facilities, supplies or resource budgets which, in turn, constrain doctors' choices at the more basic level.

Understanding the conflicts between the demands of justice and efficiency and the demands of autonomy and beneficence

Understanding the demands of justice and efficiency and sorting out the conflicts that arise between them is not, however, sufficient preparation for responsible ethical decision-making under conditions of scarcity. The demands of justice and efficiency will inevitably conflict both with concern for patient autonomy and with the professional application of appropriate beneficence. It is important to think clearly and candidly about these conflicts in advance of difficult clinical situations. A great deal can be accomplished by [page 18:] education of both health-care professionals and the general public about the nature of these conflicts and the inevitable need for compromise in sorting them out. Finally, however, education and understanding of the conflicts is not enough. Individuals will vary in their inclinations and abilities to adjust voluntarily their autonomous desires to the collective interest. At times, more than voluntary adjustment will be required. The health-care system of any society must have in place a fair and reliable mechanism to explain openly and to enforce justly such adjustments.

  The guidelines that follow are not offered as a solution to all of these conflicts. They do, however, focus on major ethical considerations, applicable at several levels of decision-making in a wide variety of situations, which can be used to guide any allocation decision that is intended to be both just and efficient and any non-treatment decision, made under conditions of scarcity, that is intended to weigh responsibly the demands of justice and efficiency against those of respect for autonomy,, nonmaleficence, and beneficence. They may also be used to appraise the degree of justice and efficiency in existing allocations.

Guidelines (9)

GENERAL GUIDELINES APPLICABLE TO DECISIONS AT ALL THREE LEVELS

1 . There ought to be general and open discussion of the ethical principles used to guide decisions at all levels regarding either the allocation of health-care resources or the limiting of treatment under conditions of scarcity (10). Widespread dissemination of such principles or guidelines to decision-makers at all levels and to the general public should be routine.

2. Prompt dissemination of accurate information about efficacy, effectiveness and cost-effectiveness ought to be routinely available to all those who have responsibility either for resource-allocation decisions or for clinical-treatment decisions under conditions of scarcity (11).

3. Decision-makers at all levels ought to keep themselves informed regarding the evidence for efficacy, effectiveness and cost-effectiveness and, having due regard for the context in question, act upon this information. Guidelines and protocols for applying the results of these studies to specific cases should be established by appropriate institutions and professional groups.

4. The need for effective treatment must be a dominant consideration in determining who receives care and the type of care to be provided. In general, an assessment of need should take into account not only the current and prospective health state of the individual, but also the ability of the patient to benefit from the possible procedures that might be offered. Doctors have a particular obligation to assess and weigh the needs of individual patients; doctors, managers and society, through some appropriate process, have a particular obligation to assess and weigh the needs of groups of patients and potential patients (12).

GUIDELINES FOR DECISIONS AT THE AGGREGATE LEVEL

5. Both justice and efficiency require universal access by the eligible population to basic health-care assessment in order that health-care needs may be evaluated (13)

6. Justice, if it is to include a component of concern to meet people's health-care needs, requires universal and equal access by the eligible population to basic health care.

7. The definition of the 'eligible population' should be determined through an appropriate process in accord with the goals of justice. The definition of 'basic services' and of the needs to be met by services defined as 'basic' should be determined through an appropriate process in accord with the goals of justice and efficiency (14).

8. The market should not be the primary determinant of access and priorities. Sometimes relatively unfettered market transactions can deliver costeffective health-care products and services but, even when market processes deliver efficiency, they often do so at the cost of justice. Moreover, efficiency as well as justice may be impaired by market transactions, since unfettered market transactions may paradoxically impair efficiency by promoting noneffective, but superficially attractive, health-care options.

GUIDELINES FOR DECISIONS AT THE INTERMEDIATE LEVEL

9. Resource allocation to decision-making units (such as hospitals or clinics) should be consistent guidelines for decisions at the aggregate level. 10. Resource allocation within such units ought to be consistent with the guidelines for decisions at the individual level. For example groups of patients with similar needs ought to receive similar treatment, while hospital departments serving similar needs ought to receive similar funding.

11. Doctors within such units whose resources are affected by decisions at a higher level ought to be consulted during the decision-making process.

GUIDELINES FOR DECISIONS AT THE INDIVIDUAL LEVEL (CLINICAL PRACTICE)

12. Patients who are alike in relevant respects ought to be treated in like fashion, ie, distribution of health care ought not to depend on morally irrelevant criteria such as race, religion, or gender.

13. Ability to pay, including insurance status, is an unjust basis for discrimination in access to basic medical care.

14. Whenever a decision to treat one patient is likely to deny treatment to another with a similar need, the consideration of the opportunity-cost of that decision is an appropriate ethical concern (15).

15. Merit is not a legitimate criterion for the allocation [page 19:] of health-care resources (16, 17).

16. Health-care professionals at the clinical level ought not to make any treatment decision that undermines legitimate attempts at a higher level to establish just and efficient allocation of resources (18).

17. As with all research that produces results that have bearing on clinical decisions, efficacy, effectiveness and cost-effectiveness studies ought always to be interpreted critically. Particular attention should be given to the value judgements used, explicitly or implicitly, in outcome and quality elements of the studies, to the scope of outcomes and costs considered, to the sensitivity of the results to changes in key assumptions, and to their relevance to the purpose in mind. Such critical awareness is not particular to costeffectiveness studies. It is no less important in assessing all research results that bear on clinical and practice-related decisions.

Notes to Part IV

(1) It is in the area of social policy concerning allocations of scarce health resources that international comparisons may be most instructive. Both the US and many European systems now inappropriately disguise the problem of scarcity and, in effect, purchase social stability at the price of justice. This occurs in the US by rendering invisible those who do not qualify for third-party health coverage and who thus may be deprived of basic care; by denying the need for systematic trade-offs and tragic choices by focusing public attention on only one issue or one case at a time; and by avoiding sustained, systematic discussion of the 'ripple effects' of the allocation decision made in response to that one issue or case, for example, the denial of basic health care to others because the White House intervened to secure a liver transplant for a child out of the fixed resources of the Medicaid budget. To a large extent these issues are disguised because the US lacks any true system of providing health care equivalent to that in European nations. (Indeed, if the US adopted a system, these decisions could no longer be disguised, and it may be the reluctance to take any responsibility for such decisions that makes US politicians favour continuation of the present non-system.)

By contrast, European countries have systems, and explicit decisions are made by physicians and by administrators within these systems to allocate funds for some sorts of care and not for others. The failure of honesty arises when the reasons for such allocation decisions are not made explicit in public, so that individual patients cannot know when treatment is withheld because of lack of benefit and when for primarily economic reasons. This is exacerbated when doctors and administrators in different regions make quite different decisions in similar cases, so that which patients get care may depend as much on geography as on diagnosis. (Howard Brody) [Return]

(2) Scarcities troubling the health services in (peaceful) western societies are, morally speaking, significantly different from scarcities of medical resources on the battlefield, in circumstances of national disasters, and under conditions of extreme poverty. The guidelines we have proposed will have consequences for the three latter kinds of scarcity as well. But even under 'normal' circumstances there are morally important differences between forgoing treatments which are life-sustaining and those which are not. In view of our chosen mandate: to develop 'guidelines for decisions to forgo life-prolonging medical treatment' (my emphasis), I do not feel that our guidelines in Part IV are sufficiently specific to state, as we indicated in note 12, Part 1, we would do, 'precisely what should be considered when drawing such lines'. (K E Tranoy) [Return]

(3) There are at least two radically different uses of the term health-care need. The standard sense of need is that one needs X if one is in some way harmed in the absence of X. Similarly one has a health-care need for X if without X one's health is harmed. Thus if one is dying from lung cancer, one needs a cure for the cancer.

On the other hand a contemporary account of need by some health economists is that need means 'capacity to benefit'. Thus if there is no effective treatment for a particular cancer, according to this definition one cannot be said to 'need' any of the existing ineffectual treatments.

The distinction necessary here, whatever definition of need is used, is between having health-care needs and having meetable health-care needs. From the perspective of providers of health care there are two different sorts of decisions to be made: 1) who has the greatest health-care needs? and 2) how should the available health-care interventions be distributed to meet these needs? [Return]

(4) My own view, still under development, is that need creates a presumptive claim in justice even if the need cannot be met: and the greater the need(s) the greater the presumptive claim. On this view someone with a great unmeetable need (say for a cure for lung cancer) and a smaller but meetable need (say for relief of pain or breathlessness) has a greater presumptive claim in justice to have his meetable need met than a person who has the same degree of meetable need (say pain or dyspnoea) but who does not have the additional unmeetable need (say for a cure for lung cancer). This view fully accepts the claim that one cannot need existing treatments that do not meet one's needs. Indeed, it is surely an analytic truth that one can only need that which would meet one's need. But the fact of having a need, even if it is for something that is unavailable — ie the fact of having an unmeetable need — creates a prima facie claim in justice to have one's co-existing meetable needs met. This view is consistent with widespread medical and other humanitarian tendencies to favour the sick over the less sick, for care and attention. But it is not consistent with any medical tendency to give inappropriate but available treatments, ie treatments that will not produce net medical benefit, as a substitute for unavailable, perhaps non-existent, appropriate treatment(s). (Raanan Gillon) [Return]

(5) The property principle recognises two types of resources used to purchase medical care: those which arise from publicly collected revenues (taxes) and those directly or indirectly generated from individuals (through fees or insurance premiums). Each society must decide which approach to the payment for, and thus provision of, medical care is appropriate. For those societies in which public funds predominate, based on some socially defined 'need' criteria, expenditure priorities should be set by cost-effectiveness analysis, with appropriate provisos regarding the measurement of both cost and effectiveness. The relevant decision-rule should be: [page 20:] offer all care for which the marginal social beneficial effects exceed the marginal social costs or rank the options by net social benefit. For those societies in which individual choice (of insurance plan, group of doctors, or hospitals) predominates, individual cost-utility analysis is the relevant decision-making framework. Doctors (or ethics groups) should advise patients (or their advocates) as to the potential effects (both cost and outcome) of each alternative, but decision-making and responsibility remain with each individual patient. (Merton D Finkler) [Return]

(6) Although both medical care and health care in the widest sense of the terms are perceived to make significant contributions to the quality of people's lives, not all medical care contributes to better health. Moreover, the contribution to better health and longer life made by improvements in lifestyle, housing, and public and personal hygiene may be greater than that of health care — especially in conditions of poverty. [Return]

(7) Some delegates felt that any ethically responsible allocation of scarce resources should consider this concept of demerit. Others felt strongly that to do so would re-introduce a most reactionary element into medical practice. See guideline 15 and note (16) below. [Return]

(8) Scarcity, by definition, requires choice. Any choice in the context of scarcity requires forgoing alternative choices. The opportunity-cost of any treatment, procedure or allocation is whatever could have been selected with the forgone choice. Societies may deny that they make such choices or disguise the ones they make, but they do so at the price of honesty, justice, and efficiency. [Return]

(9) I abstain from endorsing this section. The issues do not presently lend themselves to guidelines, resulting in simplifications with which I do not agree. For example, guideline 13 appears to require a practising doctor to accept an unlimited number of patients without regard to ability to pay. Guideline 15 appears to prohibit offering discretionary services, such as plastic surgery or psychotherapy for minor problems to patients who are able to pay if the same service is not offered to everyone. (Norman Fost) [Return]

(10) Doctors, patients, law-makers and the general public all ought to know the nature of the principles being applied, both for allocation decisions and for treatment decisions under conditions of scarcity. Several myths need to be dispelled, including the notion that it is a patient's right to receive every treatment available that may be of some potential benefit and the notion that a health-care system should be obliged to provide any such service. Programmes of public education are needed to alert the public to the facts about scarcity, the ethical difficulties involved in rationing health care, and the limitations on a doctor's clinical freedom that make it impossible to provide every available treatment. The recent successful co-operation between community health organisations and public television in several states in the US is exemplary of efficient and responsible education of this kind. [Return]

(11) The difference between efficacy and effectiveness relates to the circumstances in which clinical trials are conducted. Efficacy studies are generally performed at large teaching hospitals, research groups, or other 'centres of excellence'. They are designed to determine whether or not a particular procedure will achieve its intended biological work, ie whether or not it will work at all. Effectiveness studies, by contrast, attempt to assess the impact under normal operating conditions of adopting the procedure in question. Cost-effectiveness does not imply merely minimal cost; true cost-effectiveness ought to take account of the full range of opportunity-costs and of all relevant outcomes, whether good or bad. [Return]

(12) It is difficult for doctors to weigh at the clinical level the claims of patients for whom they have no direct responsibility. Such judgements ought to be made explicitly at higher levels of decision-making authority, ie, at the aggregate or intermediate levels, with appropriate participation of the doctors affected by such decisions. Our distinction between levels of decisionmaking is not intended to imply that it is always possible to distinguish clearly between 'medical' and 'social' decisions. Decisions at the clinical level must often, and quite properly, take account of the individual personal, family, and social circumstances of a patient, for example in deciding when to discharge the patient from the hospital. The higher-level decisions must also, and quite properly, consider the medical benefits that may follow or that may be denied by clinical decisions at the patient level, operating within the resource constraints that are being determined at that higher level. [Return]

(13) If the accepted definition of justice includes a component of concern for the health-care needs of all, justice requires universal access to initial diagnostic services in order that need may be assessed; subsequent access and utilisation might depend on need and could, therefore, be selective. Efficiency, if by efficiency is meant the use of available resources so as to maximise the health of the eligible population, requires universal access to basic-needs assessment as well as subsequent selective use of programmes of care. [Return]

(14) Who is to be eligible ought to be governed by consideration of justice. Efficiency in the sense of community-health maximisation out of available resources suggests that the eligible population ought to be defined broadly rather than narrowly. What basic services can be afforded will depend, in part, on the opportunity-cost of devoting more resources to health care rather than to other sources of human welfare or flourishing. Such preferences are contingent both on their historical context and on the cultural values of societies, which in some jurisdictions may, of course, be quite heterogeneous. Cf The President's commission for the study of ethical problems in medicine and biomedical and behavioral research and Securing access to health care: a report on the ethical differences in the quality of health services. Washington DC: 1983; supt of docs; USGPO; vol 1: 18-46.

Some delegates wanted to attempt to describe standards for a 'decent basic minimum' for health care that all societies trying to be just and efficient should provide to all citizens. The analogy appealed to was the similar standards that most societies set for food and shelter. This effort, however, seemed fraught with difficulty. It seems to be impossible to define such standards in a way that is appropriate to all societies, regardless of culture and wealth. In other fields, such as housing, it may be possible to define an agreed minimum of 'shelter from the environment'. In medical care, however, such a threshold is difficult to establish in financial terms but might be based, perhaps, on degrees of effectiveness or by distinguishing between effective medicine and the adjunct services provided, such as the hotel services of hospitals. For example, justice in the consumption of [page 21:] relatively ineffective care and in the hotel dimensions of a hospital's services may be deemed to be of no greater distributive concern than the consumption of the hotel services of hotels, and of much less concern than the consumption of needed medical care. Some delegates also argued for a concept of acceptable maxima rather than minima. [Return]

(15) Doctors, particularly when pressing for more or better resources for the care of the specific patients for whom they are responsible, ought also to bear in mind that similar claims from other doctors on behalf of other patients may be in conflict with their claims. Resolution of any such conflicts, when known, should be accomplished in an open process consistent with the goals of justice and efficiency. [Return]

(16) Delegates were unanimous on this point. The main reasons for holding this view are 1) the impossibility of identifying any pathological state which did not have the behaviour of the person in question as a partial determinant; 2) the awareness that socialisation processes in different parts of society (and, of course, across societies) may substantially reduce the autonomy of individuals and, hence, the appropriateness of classifying behaviours as 'meritorious'. Some delegates, however, expressed the position that it is not necessarily inconsistent with justice or efficiency for those who have knowingly contributed to their own ill-health to be called on to pay more for their care than might otherwise be required by the particular health-care system. The majority of delegates opposed even this form of 'demerit' based allocation suggesting that: a) there are better ways of requiring those in question to contribute to the cost of their care (for example, by taxation of high-risk behaviour) and b) that setting the payment for high-risk behaviour at the point of health care undermines the value of community solidarity on which many healthcare delivery-systems are based. [Return]

(17) Merit, or social worth, in disaster conditions and in the military, in terms of benefiting many people is a valid moral consideration. In civil medicine, merit should not routinely enter into the decision-making process in triage. This, however, is not because there is a social consensus that this would always be unethical. Rather it is because in practice there is no agreement on the relative weighting to be assigned to different kinds of social contributions. Hence, in exceptional well-defined situations, merit may bear weight and ought to be considered. (Avraham Steinberg) [Return]

(18) Legitimate decisions from a higher level must presumably be 'imposed' on doctors at the clinical level with some measure of legal force. It remains the duty of the doctor to offer everything of benefit to his patient unless it is proscribed by society. When it is proscribed by society, the decision should not be disguised as a medical decision. To do so would be deception both on the part of society and the doctor. Patients ought to be aware that decisions are politico-economic when they are, so that they may protect themselves appropriately in the political arena. (Frederick R Abrams) [Return] [page 22:]

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Authors

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John M Stanley, PhD, (Editor), Director, Lawrence University Program in Biomedical Ethics; Edward F Mielke Professor of Ethics in Medicine, Science and Society, Lawrence University

Fredrick Abrams MD, Associate Director of the Center for Health, Ethics and Policy, Graduate School of Public Affairs, University of Colorado, Denver

Pieter V Admiraal, MD, Senior Anaesthetist, de Graaf Hospital, Delft, the Netherlands

Clark H Boren, MD, Practising Surgeon, Fox Valley Surgical Associates, Appleton, Wisconsin

Howard Brody, MD, PhD, Associate Professor of Family Practice Medicine and Philosophy; Co-ordinator of the Medical Humanities Program, Michigan State University

A G M. Campbell, MB, FRCP (Edin), Professor Emeritus Department of Child Health, University of Aberdeen; Consultant Paediatrician, Royal Aberdeen Children's Hospital

Herbert S Cohen, MD, General Practice, Capelle ald Ijsell, the Netherlands.

B N Colabawalla, FRCP (London), Consultant Urologist, Bombay, India

Ronald E Cranford, MD, Associate Physician in Neurology, Director Neurological Intensive Care Unit, Hennepin County Medical Center, Minneapolis

A J Culyer, PhD, Head of Department of Economics and Related Studies and Pro-Chancellor, University of York

Gunnar Dahlstrom, MD, Emeritus Professor of Medicine, Uppsala University, Uppsala, Sweden

John Dawson, MD, MRCGP, Former Head of Professional, Scientific and International Affairs Division, and Under Secretary, British Medical Association, London, England. Deceased

Nancy W Dickey, MD, Member, American Medical Association Council on Ethical and Judicial Affairs; Associate Clinical Professor, Department of Family Medicine, University of Texas Medical School

Heleen M Dupuis, PhD, Professor of Bioethics, Leiden University, the Netherlands

Merton D Finkler, PhD, Associate Professor of Economics, Lawrence University

Norman Fost, MD, MPH, Professor and Vice-Chairman, Department of Paediatrics, Director, Program in Medical Ethics, University of Wisconsin

Grant Gillett, MB, ChB, DPhil, FRACS, Senior Lecturer in Medical Ethics, University of Otago Medical School, Dunedin, New Zealand

Raanan Gillon, BA, MB, BS, FRCP (London), General Practitioner; Visiting Professor of Medical Ethics, St Mary's Hospital Medical School/Imperial College, London University; Editor, Journal of Medical Ethics

Shimon Glick, MD, Professor of Internal Medicine, Ben Gurion University of the Negev, Beer Sheva, Israel

Nancy Homburg, MD, Family Practice Medicine, La Salle Clinic, Appleton, Wisconsin

Bryan Jennett, MD, FRCS, Emeritus Professor of Neurosurgery, Institute of Neurological Sciences, Glasgow

Joanne Lynn, MD, Senior Associate in the Center for the Evaluative Clinical Sciences; Professor of Medicine, Dartmouth-Hitchcock Medical Center

Terrence Meece MD, Medical Director, Kimberly Clark Corporation, Coosa Pines, Alabama

John E Mielke, MD, Associate, Appleton Cardiology Associates; Consulting Cardiologist on the staff of 9 North Eastern Wisconsin

Thomas H Murray, PhD, Director, Center for Bio-Medical Ethics, Case Western Reserve University School of Medicine

Jan-Otto Ottosson, MD, Professor of Psychiatry, University of Goteborg, Goteborg, Sweden

John J Paris, SJ, PhD, PhL, Walsh Professor of Bioethics, Boston College

Povl Riis, MD, Physician-in-Chief, Herlev University Hospital; Professor of Internal Medicine, University of Copenhagen

George S Robertson, MD, Consultant Anaesthetist, Aberdeen Royal Infirmary

Arnold J Rosin, MB, ChB, FRCP, Chief of Geriatric Department, Shaare Zedek Medical Center, Jerusalem

David Schiedermayer, M D, Associate Director, Center for the Study of Bio-Ethics, Medical College of Wisconsin

Dale Anne Singer, MD, Consultant in Paediatric Oncology, Phoenix, Arizona

James V Snyder, MD, Professor of Anaesthesiology, Division of Critical Care Medicine, University of Pittsburgh School of Medicine

Avraham Steinberg, MD, Consultant in Child Neurology, Bikkur Cholim Hospital; Practising Paediatrician, Shaare Zedek Medical Center, Jerusalem

Knut Erik Tranoy, PhD, Professor of Medical Ethics, Faculty of Medicine, University of Oslo, Norway

Cees van der Meer, MD, formerly Head of Department of Internal Medicine, Free University, Amsterdam; Chairman of the Medical Ethics Committee, Free University

William J Winslade, PhD, JD, James Wade Rockwell Professor of Philosophy in Medicine, Institute for the Medical Humanities, University of Texas Medical Branch, Galveston, Texas.

 

Guest Editor's note: Sadly, two of the original participants in the Appleton Project died before its completion. The authors gratefully acknowledge the contributions and support of John Dawson, former Head of Professional, Scientific and International Affairs Division, British Medical Association, London and Ragnar Nesbakken, former Professor of Neurosurgery, Karolinska Institute, Oslo.

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Joint sponsorship The publication of this supplement has been made possible by the joint sponsorship of The Wellcome Foundation Ltd, London and the Novus Health Group, Appleton, Wisconsin.

Acknowledgements The three international conferences that resulted in The Appleton International Conference: Developing Guidelines for Decisions to Forgo Life-prolonging Medical Treatment were held at Lawrence University, Appleton, Wisconsin, USA under the auspices of the Lawrence University Program in Biomedical Ethics. These conferences and the publication and distribution of the study edition of The Appleton Consensus: Suggested International Guidelines for Deciding to Forgo Medical Treatment were made possible by grants from: The Novus Health Group, Appleton, Wisconsin, USA; the Appleton Medical Center Foundation Inc; The Raymond Carlson Trust; St Elizabeth Hospital; the Theda Clark Regional Medical Center; the Wisconsin Humanities Committee; the Fox Valley Family Practice Residency; the Continuing Medical Education Fund of the Appleton Hospitals; The Henry J Kaiser Family Foundation (Menlo Park, California); The Upjohn Company; the CIBA Pharmaceutical Company; Medtronic, Inc; Lawrence University; the British Medical Association; the University of Leiden Medical School Programme in Medical Ethics, and The Madsen Foundation (Copenhagen, Denmark).

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[*] [Note: Pagination of the original supplement is indicated in bold blue [square] brackets. I have produced this HTML copy of the Appleton International Conference by scanning the original and then using an Optical Character Recognition program to create editable text, and then converting that into HTML formatted text; while I have checked the result for errors caused by the OCR program, errors undoubtedly remain. Jack Stanley, the Guest Editor of the Supplement to the 1992 Journal of Medical Ethics, has encouraged me to make this text of the Appleton International Conference available in HTML format. The original supplement was published by the British Medical Association on behalf of the Institute of Medical Ethics and the British Medical Association. Professor Stanley suggests that the earlier Study Edition of the Appleton Consensus be used only in conjunction with this final report. —boardman 8/5/00.] [Return]

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