[ reposted August 5, 2000 ] Table of Contents Note from Professor Stanley Lawrence's Interdisclipinary Area in Biomedical Ethics

The Appleton Consensus:
Suggested International 
Guidelines for Decisions to
Forgo Medical Treatment

Study Edition

 Edited by John M. Stanley

Proceedings of Guidelines 
for Non-Treatment Decisions: 
An International Working Conference

 May 15-19, 1988 

"The Appleton Consensus: suggested international guidelines for decisions to forgo medical treatment" was originally published in the Journal of the Danish Medical Association (Ugeskr Laeger) 1989; 151,11:700-706. It was reprinted in the Journal of Medical Ethics 1989;15:129-136, and in the Icelandic Medical Journal (Laeknabladid) 1989;75:303-311.

[Note: Professor Stanley explains that the Study Edition of the Appleton Consensus is "the annotated edition of the initial (1988) draft of the report that was circulated to 152 discussion groups in 15 different countries for discussion and comment. The results of the deliberations of these discussion groups were considered at the third meeting of the delegates in the spring of 1991. That meeting produced the final version of the report which was published as a special supplement to the September 1992 edition of The Journal of Medical Ethics (Volume 18: Supplement, pp. 1-22)." He suggests that this earlier Study Edition of the Appleton Consensus be used only in conjunction with the final report, The Appleton International Conference: DEVELOPING GUIDELINES FOR DECISIONS TO FORGO LIFE-PROLONGING MEDICAL TREATMENT.]

TABLE OF CONTENTS

Introduction to the Study Edition

Introduction to "The Appleton Consensus"

PREAMBLE: Ethical Background

PART I: Decisions Involving Competent Patients Or Patients Who Executed An Advance Directive Before Becoming Incompetent

PART II: Decisions Involving Patients Who Were Once Competent, But Are Not Now Competent, Who Have Not Executed An Advance Directive

PART III: Decisions Involving Neonates And Other Patients Who Are Not Now And Never Have Been Competent

PART IV: Scarcity

Authors of the Consensus Guidelines

TABLE I: Guideline Working Groups

Biographical Information for the Authors of "The Appleton Consensus"

Glossary

Appendix

Acknowledgments

[Note on this HTML version.]

[page 4:]

INTRODUCTION TO THE STUDY EDITION OF "THE APPLETON CONSENSUS"

"The Appleton Consensus" was originally published in the Journal of the. Danish Medical Association (Ugeskr Laeger) 1989; 151, 11:700-706; it was reprinted in the Journal of Medical Ethics 1989; 15:129-136 and in the Icelandic Medical Journal (Laeknabladid) 1989; 75: 303-311. As the introduction to the original statement indicates, it was the work of thirty-three physicians, ethicists, and medical economists meeting during two conferences and corresponding over a period of two years. In the last plenary session of the second conference, the delegates committed themselves to convene in their local communities discussion groups in which they would promulgate and discuss the guidelines they had just created. They voted that a study edition be produced by the editor that would capture in study notes the important points of agreements and disagreements articulated on the way to consensus and any particularly important insights that did not find their way into the published statement.

 The material for the study notes provided here came from two principal sources. The tape recordings of the working sessions and the plenary sessions were reviewed and "mined" for insights and perspectives that would enhance discussion. Then, when the first version of the statement was circulated to the delegates to sign, invitations were extended to each delegate to comment on any point in the consensus statement that he or she felt might need further elaboration. In February of 1989 a drafting committee met over one long weekend in Colorado Springs, Colorado, to review and edit all of the material that had been contributed for study notes.

 We realized at that time that a study edition might well have a far wider circulation than originally imagined. It was suggested that a goal of 250 discussion groups be convened in various parts of the world and that they not be limited to groups of health care professionals but that at least some of the groups represent perspectives of "ordinary people" — what the British might refer to as the perspective of the "man of the Clapham omnibus" and the Americans as a "grassroots perspective." It was also suggested that appropriate report forms be created to gather responses both from the individual participants in the study groups and the study group leaders and that discussion groups be convened among people representing perspectives from parts of the world that were not represented by delegates at the two conferences.

 If you are reading this introduction now, you are participating in one of those discussion groups. You may be a member of a hospital ethics committee establishing or reviewing policy for your specific institution. You may be a member of a professional group using these guidelines as a model or a point of departure for guidelines relevant to your own particular group or practice. You may be reading and discussing the guidelines from the perspective of a citizen who wants to say something to the people who are revising these guidelines at a time where your voice may be influential. Whatever your perspective, we invite your thoughtful consideration of the material that follows and your thoughtful comments on the report forms.
 
 

How to Use the Study Edition

The notes following each section of the guidelines are of three different kinds: the notes in the same typeface as the text are from the published version of the statement; those in the smaller, sans serif typeface that are identified as "editor's notes" have been added by the editor to further explain certain portions of the original text and to provide important background information and have been written especially for the Study Edition to assist non-health care professionals in their reading; the notes in sans serif type that are identified by name are written notes submitted to the drafting committee by individual delegates. Attention to the notes will contribute to an understanding of the process by which delegates examined their personal and professional values to arrive at consensus on controversial matters pertinent to universal concerns about decisions to forgo life-sustaining treatment.

[page 5:]

INTRODUCTION TO "THE APPLETON CONSENSUS"

Thirty-three delegates from ten different countries[1] convened in Appleton, Wisconsin, USA, from May 15-19,1988, under the auspices of the Lawrence University Program in Biomedicai Ethics, to create a first draft of what they hoped might become international guidelines for treatment abatement procedures. The delegates attending committed themselves to convene a forum at an appropriate level in their home country or community for further discussion of the statement produced at the conference.

Twenty-five of the thirty-three delegates were physicians, representing eleven different medical specializations. Of the eight non-physicians, six had extensive clinical experience in the creation of important medical ethics guidelines in the past.

Two particular sets of concerns had emerged during a preparatory conference one year earlier, which the majority of delegates had attended: 1) concerns regarding decisions to forgo medical treatment, including life-prolonging treatment, precipitated by autonomous requests by patients or their surrogates, and 2) concerns regarding decisions to forgo medical treatment as a result of pressures due to scarcity.

The goal of the second international conference was to draft a statement addressing these concerns in the form of guidelines for discussion in medical and medical ethics communities internationally.

The delegates were divided into four working groups.[2] In the first three plenary sessions of the conference, the delegates studied existing sets of guidelines,[3] discussed the processes of searching for consensus, and set their operational goals for the working sessions. After four working sessions, each working group reported its progress for plenary discussion. During two further group sessions, the working groups reworked their statements in light of the suggestions from the plenary session before preparing a final report to the whole group. Each report was then discussed line by line in two long plenary sessions to produce the four part consensus statement.[4]

Notes to Introduction

[1] 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 the discussion provoked by the publication of these guidelines will lead to contributions from many of those perspectives. [Return]

[2] The membership of the working groups is indicated in TABLE I:, p.15. [Return]

[3] Including the following: The Euthanasia Report: Report of the Working Party to review the British Medical Association's guidance on euthanasia (London: British Medical Association, 1988); The Report of the Terminal Care Commission (Sweden: SOU, 1979:59); The standpoint of the Royal Dutch Society for Medical Science (KNMG) concerning euthanasia (Medisch contact 1984: August); Deciding to forego life-sustaining treatment: a report on the ethical, medical, and legal issues in treatment decisions, President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (Washington DC: USGPO, 1983; 83-600503 (also reprinted by Concern for Dying — An Educational Council, 250 West 57th Street, Suite 831, New York, NY 10107]); and Guidelines on the termination of life-sustaining treatment and the care of the dying, A report by the Hastings Center (The Hastings Center, Briarcliff Manor, New York: 1987). [Return]

[4] "The Appleton Consensus: suggested international guidelines for decisions to forgo medical treatment" was originally published in the Journal of the Danish Medical Association (Ugeskr Laeger) 1989; 151,11:700-706. It was reprinted in the Journal of Medical Ethics 1989; 15:129-136 and in the Icelandic Medical Journal (Laeknabladid) 1989; 75:303-311. [Return]
 
 

[page 6:]

PREAMBLE: ETHICAL BACKGROUND

In caring for patients, physicians, as individuals and as representatives of their profession, should act with integrity in providing medical treatment within certain norms of care and concern.[1] Despite widely diverse national, cultural, religious, and political traditions, four prima facie moral values or principles summarize these norms: [2,3,4]
 
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. Respect for patients' dignity and integrity, for honesty, and for promise-keeping are aspects of respect for autonomy. Respect for the autonomy of health care professionals is no less important and no more important than the respect for the autonomy of their patients.
 
2. Non-Maleficence. 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.[5]
 
3. Beneficence. All persons have some prima facie moral obligation to benefit others, to some degree, including, perhaps even especially, those in need. The extent and scope of this obligation are, however, highly influenced by both cultural and individual interpretation. In any case, health care providers acknowledge themselves to have a particular obligation to benefit their patients and to do so with minimal harm.[6]
 
4. Justice. All persons[7] have a prima facie moral obligation to act justly or fairly to others in the context of respecting each other's rights, in the context of obeying morally acceptable laws, and in the context of the distribution of scarce resources. Interpretation of the precise nature and extent of these obligations is highly dependent on. both cultural and individual perspectives.
 
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.[8] Moreover, substantive disagreements exist within cultures about both their scope and relative weights. Nonetheless, their acknowledgment provides a valuable cross-cultural basis for medico-moral analysis, discussion, and decision making.
 

Notes to Preamble

[1] Grant Gillett: "The Appleton Consensus" 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 that in the Hippocratic oath. The importance of the Hippocratic oath was that it identified a group of people who were 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 allows 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 harms 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 (physicians) but not if done by lay people. We all intuitively expect 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 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 relation 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 we protect ourselves against the illegitimate, malintentioned, or cynical use of medical techniques. In our society medicine holds out hopes of great benefit but also risks of great harm. It is therefore vitally important that it be regulated, so that the [page 7:] way it is practiced puts the welfare of the patient in the highest place in medical decision making. If we hold fast to the notion of a profession and Its integrity, we can do this and so guard our patients and our society against the unscrupulous use of biomedical technology which is not of proven benefit. If we lose sight of professional integrity, we also lose sight of the fact that the doctor owes allegiance to a norm of practice according to which he or she serves the patient and that the best interests of his or her patient must always be his or her paramount concern.[Return]
 
[2] 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 [second edition, 19831), and are discussed by Raanan Gillon, Philosophical Medical Ethics (Chichester: John Wiley and Sons, 1986). See also The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects (Washington, DC: DHEW pub. no. (os) 78-0012). [Return]
 
[3] Howard Brody: Appeal to the four principles proposed by Beauchamp and Childress has characterized most of the best work in U.S. 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 behavior. 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 characterized. 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. [Return]
 
[4] Some delegates felt it important to emphasize that autonomy should not be given higher priority than other values. [Return]
 
[5] Editor's note: This sentence will be recognized by health care professionals as the principle of "do no harm" (primum non nocere). To a medical practitioner It 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]
 
[6] Editor's note: "Minimal harm' in this context means as little harm as is necessary to achieve the desired benefit. [Return]
 
[7] Editor's note: Some delegates argued that the requirements of justice should not rest entirely on individual or personal obligations to act fairly and that we should therefore add explicitly, in Joanne Lynn's words, that "societies bear the obligation to advance the general welfare of their citizens through social institutions and policies." [Return]
 
[8] Several delegates felt that "respect for life" should be added as a fifth principle coequal with the other four.[Return]

[page 8:]
 
 

PART I: DECISIONS INVOLVING COMPETENT[1] PATIENTS OR PATIENTS WHO EXECUTED AN ADVANCE DIRECTIVE BEFORE BECOMING INCOMPETENT

In the context of the norms of medical practice summarized in the preceding preamble, five guidelines are suggested concerning requests from competent patients or from incompetent patients who had competently provided advance directives, oral or written. These guidelines fall into three categories.
 
 

GUIDELINES

REFUSAL OF TREATMENT

1. If a competent patient rejects treatment that the physician believes to be in the patient's interests, especially where such treatments are life-prolonging,[2] the physician should seek to explore the patient's reasons for such refusal and seek to correct any misunderstandings. However, a physicianshould 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 physician or institution prepared to respect the patient's wishesIn all cases, including those where a patient's refusal of a specific treatment is respected, the physician and the health care institution have the obligation to continue to offer supportive care and treatment for pain and suffering. [3,4,5,6]
 
2. Where an incompetent patient previously has given a competent advance directive to refuse treatment and/or has appointed a representative to make decisions about refusal of treatment, such advance directives and decisions should be respected by physicians and other health care workers.[7]
 
 

REQUESTS FOR TREATMENT, INCLUDING LIFE PROLONGING TREATMENT

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

4. Where an incompetent patient has previously given a competent advance directive requesting life-prolonging treatment(s) and/or appointed a representative to make such requests, physicians 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. Requests for euthanasia by competent patients severely and irremediably suffering as a result of incurable disease may be justified. It is a separate question whether they should be honored. Physicians have an obligation to try to provide treatment and care that will result in a peaceful, dignified, and humane death with minimal suffering. However, statutory legalization of the intentional killing of patients by physicians is against the public interest.[13,14,15] Delegates disagreed as to whether physicians should, as in Holland, be protected from prosecution if euthanasia were carried out according to agreed guidelines.[16,17]

Notes to Part I

[1] The term competent (and all variations such as incompetent, competence, and so forth) is used [page 9:] throughout this statement in its general ethical sense indicating adequate decision-making capacity for the specific decision or class of decisions under discussion, and not in its narrower legal sense. In this general ethical sense, the term is equivalent to "sufficiently autonomous for the person in question to fall within the scope of the principle of respect for autonomy." [Return]
 
[2] Editor's note: 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] In some religious traditions (e.g., orthodox Judaism) refusing lifesaving treatment is considered morally wrong in almost all circumstances. [Return]
 
[4] Howard Brody: 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 were 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 U.S. law and ethics that institutions have little basis to claim that honoring such a refusal would intolerably violate their own moral values and moral integrity. Recent U.S. court cases have unanimously held that patient transfers are inappropriate in such instances. (What has not yet been tested in U.S. courts is the right of an institution to announce in advance of patient admission that certain sorts of treatment refusals will not be honored 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, p.24 (see Notes to Introduction, number 3) goes farthest in recognizing transfer and no transfer policies as crucial to operational medical ethics.[Return]
 
[5] George Robertson: There is an emerging consensus in writings from the U.S.A. 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 has received adverse criticism: see for example Higgs (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.'" See also a review of the BMA Report, The Hastings Center Report on Non-treatment, and The King's Centre Report on Living Wills (David Greaves, Institute of Medical Ethics 1988 [May]: Bulletin Number 38).
 
Unlike the BMA Euthanasia report, the British report "The Living Will: Consent to treatment at the end of life" (Age Concern England & 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 UK 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 judgments with increasing age. The BMA position is summarized 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 be 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 should be treated with the utmost respect." [Return]
 
[6] Shimon Glick: In the Jewish tradition, the right to refuse dearly lifesaving treatment is not recognized as valid, and like suicide, is not morally acceptable. While in our pluralistic Western societies (including Israel), the enforcement of this view (i.e., by imposing treatment) is not presently possible, it would be desirable from the traditional Jewish view. [Return]

[7] Joanne Lynn: Advance directives are always less conclusive evidence than the contemporaneous statement of a competent, informed, and autonomous person. The advance directive substitutes [page 10:] 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 similar enough to the one now faced. These concerns can be met fairly commonly, since ordinarily 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. [Return]
 
[8] Editor's note: The delegates here are distinguishing 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 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]  Howard Brody: Part of the debate on futility hinges on the ambiguity of the term. For example, in recent articles on cardiopulmonary resuscitation in the U.S., "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 physicians 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) the treatment may produce results which in the patient's eyes seem to be beneficial proportionate to the burdens imposed, but which in the physician's judgment was "futile" in the sense that the burdens would far outweigh the benefits. I believe that almost all would agree that the physician in situation (1) is justified in withholding treatment on grounds of futility utility; 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 physician paternalism.[Return]
 
[10] Editor's note: The phrase "norms of medical practice" refers to the norms that would generally be accepted by a physician'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] Editor's note: Examples of such treatment could include therapeutic abortion or, in medical cultures where it is legal, assisted suicide.[Return]
 
[12] Editor's note: This statement merely acknowledges the 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 where such lines will be drawn is left, at this point, to Part IV of this statement. [Return]
 
[13] Editor's note: This sentence was the single most controversial sentence in our consensus deliberations. I think it is fair to say that none of the delegates was entirely happy with the sentence in its final form which seems to reek with compromise. Three delegates have expressed their formal dissent, claiming that the statement was not strong enough and should have Included an endorsement of moral grounds for opposing euthanasia (see note number 14 below). Others felt the sentence overstated the consensus (see notes 16 and 17). [Return]
 
[14] Three delegates (Shimon Glick, Arnold Rosin, and Avraham Steinberg) issued a formal dissent from this sentence in the published version of the consensus statement arguing that legalizing such intervention was not only contrary to public interest but a violation of "basic mortality." The text of their dissent reads:

 Requests for euthanasia by competent patients severely and irremediably suffering as a result of incurable disease may be understandable, but are not morally justified. Statutory legalization of the [page 11:] intentional killing of patients by doctors is against basic morality as well as against the public interest. [Return]


 
[15] Fredrick Abrams: The fourth sentence comes as an abrupt non-sequitur after the first three. Simply declaring without argument or explanation that "legalizing the intentional killing of patients by doctors is 'against public interest' " is arbitrary and arrogant. This is especially true in the face of repeated confirmation that a majority of the public in repeated annual polls, and in increasing numbers, for several years (most recently The 1988 Roper Poll on Attitudes toward Active Euthanasia, copyright The National Hemlock Society, 1988; Making Difficult Health Care Decisions—A Survey for the Loran Commission by L. Harris and Associates, Harris Poll study #874003, June 1987; and "A Survey of Opin ions and Experiences of Colorado Physicians," 1988) state that there are circumstances under which a physician should accede (or be legally permitted to accede) to a patient's request for a lethal dose of medication. Rather than simply accepting this statement as an unquestioned truth, I would propose broad exposure and debate in the media for the public. An effort must be made to learn whether the large number of citizens and the significant minority of physicians who hold active euthanasia to be med ically appropriate can devise a safe way to confine this to requests from competent patients with irremediable suffering.[Return]
 
[16] James Snyder: I continue not to understand how we can be so certain that legalizing the intentional killing of patients by doctors is against public interest. Where does our ethical stance leave the patient who is justifiably calling for relief? Our position seems to condone putting such patients into a narcotic stupor. Once they are pain free, does our physician allow us to stop nutrition or ventilatory support? Can we really use the double effect argument to withdraw support from comatose patients when we put them in a coma at their request? We do not have a reasonable way to deal with these conundrums (which are admittedly very common). The Dutch culture seems to be accepting a carefully constructed defacto legalization of accountable, intentional killing of patients by doctors. How certain can we be that following the Dutch example would be against the public interest?[Return]
 
[17] George Robertson: Despite evidence of an increasing level of public opinion in favour of voluntary euthanasia (certainly this Is true of the U.S.A. and Britain), all countries other than Holland 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 & Singer, Medical Journal of Australia 1988;148: 623).
 
During informal discussion at the Appleton Conference, a few delegates formed the opinion that euthanasia, judging by polls of public and medical opinion, was on 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 toward acting in the face of existing legislation.
 
The more rigorous 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.[Return]

[page 12:]

PART II: DECISIONS INVOLVING PATIENTS WHO WERE ONCE COMPETENT, BUT ARE NOT NOW COMPETENT, WHO HAVE NOT EXECUTED AN ADVANCE DIRECTIVE[1]

These guidelines pertain to situations involving patients who once were but are no longer competent, 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

PHYSICIANS RESPONSIBILITIES

1. Medical Prognosis. The physician has the responsibility to discern, to the extent possible, the patient's current medical and social situation,[2] 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 physician 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.[3]
 
4. "Substituted Judgment" Decisions. If the physician can determine that a particular plan of care, including the forgoing of particular treatment, is clearly most in accord with the patient's values and if the patient's family and direct caregivers concur, then that plan of care should be pursued.[4]
 
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 physician, in consultation with the family, if available, and other direct caregivers, should identify the plan of care that would most generally be thought to advance most such patients' interests; and, if family and direct caregivers 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.[5,6,7]
 
 

CONFLICT BETWEEN DECISION MAKERS

6. If there is a conflict between the responsible physician and an involved caregiver 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. Counseling, discussion, consultation, and other informal interventions may bring about significant degrees of agreement.[8] If the person(s) who disagree(s) with the physicians recommendation is emotionally and socially distant and there are others who are emotionally and socially close, then the physician may disregard the claims of the more tangential party. However, if the disagreement is with someone close to the patient, the physician should not generally override that view without resorting to more formal conflict resolution processes. These might include intra-institutional authorities (e.g., ethics committees or department heads or administrators) or extra-institutional authorities (e.g., the courts). Institutions and programs of care should have available, reliable, and responsive procedures that ensure that all relevant considerations are given their due. [9,10,11]
 
 

SOCIALLY ISOLATED PATIENTS

7. If the now-incompetent patient has no family or friends, the physician has an especially weighty obligation to ensure that decisions are made well. Not all such patients need personal advocates (e.g., guardianships, ombudspersons, public officials), but the physician should consult widely with other direct caregivers, consultants, and relevant religious advisors. Some cases may merit formal review either by intra-institutional or extra-institutional authorities before the decision is made by the physician. The need for this prospective review should reflect the degree to which 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. [page 13:]
 

RESTORATION OF COMPETENCE

8. When it is reasonable to believe that a patient could regain competence before a weighty decision must be made, the decision should be delayed in order to allow the patient the opportunity to make the decision.
 
 

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.[12]
 
 

CARE PLAN CONSIDERATIONS

10. Plans of care must be reasonably comprehensive, including considerations of what treatments to utilize, 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.[13,14,15]
 
 

QUALITY REVIEW

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

ACTIVE EUTHANASIA

12. Intervention with the sole intention of causing death (as distinguished from forgoing treatment that is deemed inappropriate) has no place in the treatment of permanently incapacitated patients.[16] However, vigorous treatment to relieve pain and suffering may well be justified, even if these interventions lead to an earlier death.
 
 

PERSISTENT VEGETATIVE STATE

13. The patient who is reliably diagnosed as being in the persistent vegetative state (PVS)[17] has no self-regarding interests. Unless the patient in the past has requested or the family or caregivers now can justify continuing lifesustaining medical treatments, there is no reason to use those treatments. [18,19]

Notes to Part II

[1] James Snyder: All decisions involving patients who are incompetent should be fully documented and available for review. [Return]
 
[2] Editor's note: The words "and social" added to the phrase "current medical situation" are intended to denote all of the relevant social factors in the patient's current medical situation. [Return]
 
[3] James Snyder: 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 rationalize decision making based on the physician's preferences. Editor's note: Some delegates suggested that operationally this goal might be accomplished by deciding, where possible, who should count as "family" before specific questions about the patient's values are asked. [Return]
 
[4] Editor's note: In this guideline (number 4) and in number 5 which follows, delegates are making a distinction between decisions based upon a "substituted judgment" and those based upon a "best interests test." The former, articulated in this guideline, is an attempt to reconstruct on the basis of information from the family and the values history that the physician had recovered (guideline 2), what the patient would want for himself or herself. It is an effort to reconstruct a first person judgment. Joanne Lynn's excellent note number 7 to Part I on advanced directives is useful to reexamine in light of this distinction. [Return]
 
[5] 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 physicians 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 prolonging life is always in a patient's interest.

Editor's note: By "vitalist assumption" the delegates here mean the assumption that life itself is of paramount value irrespective of its quality. [Return]
 
[6] Shimon Glick: Among the "ordinary" desires of persons, their desire to live should be included. [Return]
 
[7] Arnold Rosin: Normally, treatment should be thought of in these terms, but many of these terms do not apply to ill or permanently disabled persons. [page 14:] When in doubt, treatment should be given, although it may be eventually modified to a submaximal degree as the clinical prognostic profile becomes clearer.[Return]
 
[8] Examining the rationale for the statements of family, friends, and caregivers is an important part of this 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 they are disagreeable or inarticulate. [Return]
 
[9] Editor's note: That is to say, whether intra-institutional authorities or extra-institutional authorities are being appealed to, the specific institution should have a procedure for such appeal that is available, reliable, and responsive. [Return]
 
[10] Fredrick Abrams: I believe further discussion as to why courts must be a very last resort would be valuable. Legal procedures are prolonged and expensive. Health care workers and social service guardians will often avoid such a process despite the fact, for example, that a "do not resuscitate" order would obviate the need for sick and very old patients to "die" several times. Currently in the U.S., physicians too often find it much easier to wait and hope that the need for a decision occurs on someone else's shift than to become embroiled in a cumbersome legal process. 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.[Return]
 
[11] Avraham Steinberg: Further elaboration is needed on the issue of resolving factual and moral uncertainties in reference to the dying patient. The notion "when in doubt—err in favor of life" ought to be stressed. (See also Notes to Preamble, number 7.)[Return]

[12] 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 8 and 9 to Part 1.[Return]
 
[13] 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 forego life-sustaining treatment: a report on the ethical, medical, and legal issues in treatment decisions (Washington, DC: USGPO, 1983; 83-600503 [also reprinted by Concern for Dying —An Educational Council, 250 West 57th Street, Suite 831, New York, New York 10107]). [Return]
 
[14] Avraham Steinberg: It should be noted that some cultures strongly favor withholding treatment rather than withdrawing treatment, as opposed to the consensus document's suggestion that withholding and withdrawing treatment are equally accepted and that occasionally withdrawing is even more justified.[Return]
 
[15] Editor's note: 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]
 
[16] Editor's note: Pilot discussions of the Study Edition have revealed that the use of the word "sole" makes this sentence considerably weaker than the delegates probably intended it, since, according to some interpretations, it is difficult to think of anything in medicine that is intended "solely" for anything. Probably what the delegates intended would be better conveyed by the word "principal" or "primary." It is dear that none of the delegates would have wanted the word "sole" to function as a loophole that would essentially make the statement totally non-prohibitive. Since, however, some degree of intention of death seems to play a role in any decision about whether the continuation of life-prolonging treatment is appropriate, some modification of the word "intention" in the portion of the sentence before the parentheses seems necessary. [Return]
 
[17] Editor's note: The persistent vegetative state is a diagnosable condition. It is characterized by a live, even persistently or stubbornly alive, brain stem combined with the irreversible destruction of the neocortex in the upper hemispheres of the brain. A patient in a persistent vegetative state 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 brain stem), 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 what will constitute reliable diagnosis. Some will require more time than others to characterize a diagnosis as reliable. There is no evidence of any persistent vegetative state 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. Even in those few cases where the diagnosis was incorrect and some degree of consciousness has been regained (the classic cases are: Sergeant David Mack and the Rosenberg case reported in the Journal of Neurology, 1977), the quality of life to which such a patient has recovered is compromised by severe, almost total, paralysis. [Return][page 15:]

[18] Editor's note: Some delegates argued that continued treatment of PVS patients can be justified by the benefit such treatment would offer to others (e.g., 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 persistent vegetative state 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 continued treatment of 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 a mount of time to recognize the hopelessness of the situation. That it should be a short time only was predicated 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 ft. 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. While not objecting to the guideline, one delegate felt ft was important to leave to the discretion of the physician the option to continue life support in rare cases.
 
Note: A deontological argument is a non-consequentialist, duty-based argument that a specific course of action is good in itself — as distinguished from good because of the consequences ft produces. A utilitarian argument is a consequentialist argument that the good of any action is determined by the totality of its consequences (both intended and unintended). [Return]
 
[19] Five delegates (Shimon Glick, Thomas Murray, Arnold Rosin, Avraham Steinberg, and Susan Wolf) issued a formal dissent from this guideline. The text of their dissent reads as follows:
 
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 characterized as "harmful" to themselves. We, therefore, cannot accept a categorical statement which rules out life-sustaining treatments. [Return]
 
 

[page 16:]

PART III: DECISIONS INVOLVING NEONATES AND OTHER PATIENTS WHO ARE NOT NOW AND NEVER HAVE BEEN COMPETENT

These guidelines address 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 judgment" can be rendered, as their present or previous wishes and desires cannot be known. Within this group two further distinctions may be useful:

 

GUIDELINES

QUALITY-OF-LIFE JUDGMENTS
 
1. Regard for the value of life does not imply an absolute duty to employ life-prolonging treatment for non-competent patients. In setting reasonable limits for such treatment, third person judgments about quality of life are inevitable. Responsible third person quality-of-life judgment[2] consider, insofar as possible, how the options must appear from the perspective of one in the patient's condition and determine what would most generally be thought to count as quality for most such patients.[3],[4]
 
2. Assessing quality of life of these patients for purposes off medical decisions involves weighing the ratio of benefits and burdens.[5]
 
3. In most decisions involving patients in this category, at least five sets of interests may be discerned:

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 (e.g., 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 patients own interest is integrally interwoven with the interest of the family and the community. Part of the physician's clinical wisdom consists of responsibly weighing interests and creatively resolving apparently irreconcilable conflicts.[6]

COMMUNICATION WITH PATIENT'S SURROGATE
 
4. When the patient has a surrogate, the physician's obligation to the patient also requires certain duties toward 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 recognizes these duties to the surrogate is to be worthy of the trust that one hopes the surrogate will place in the physician, so that a policy of mutual and shared decision making may be fostered. When the patient is a child with an emerging capacity to participate in the decision-making process, both physician and surrogate demonstrate respect by responding to questions and concerns at a level consistent with the child's cognitive and moral development.
 
DOCUMENTATION OF MEDICAL CARE
 
5. While the physician is required to act in a trustworthy manner toward the patient and surrogate, the range of interests that could conflict (see Part II, guideline number 3) 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 audit. This [page 17:] careful documentation should include both the careful recording of management plans and the internal reasoning that led to them. 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 audit 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.[7]
 
WEIGHING BENEFITS AND BURDENS

 6. When patients lack a surrogate, little difficulty arises when the benefit-burden ratio clearly favors 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 physician's decision making.[8]

7. The physician may appropriately withdraw or withhold life-prolonging treatment when, in the view of the informed surrogate and physician, continued treatment would lead to unacceptable burdens without sufficient compensating benefits. What counts as a benefit and a burden and the relative ratio between them depend 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 stigmatization, their interests are not protected by the elimination of decisional discretion. On the contrary, a trustworthy physician and the processes of appropriate audit are better means of protecting the interests of vulnerable patients.[9]
 

Notes to Part III

[1] Editor's note: The word "surrogate" here and throughout means substitute decision maker. [Return]

[2] Third person quality-of-life judgments are made grammatically and logically in the third person —i.e., judgments about the quality of "his" or "her" life as compared with first person judgments about the quality of "my" life. [Return]

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

[4] Editor's note: Some delegates argued that an 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 a inappropriate projection of others' interests onto the infant or other incompetent person. Instead, they argue, judgments in such cases should be based entirely on what others consider to be the patient's "best interest." Others felt that the attempt to as certain Insofar as possible "what most such patients would count as quality" was an undeniable responsibility of decision makers in any decision involving quality of life. [Return]

[5] It is recognized, however, that the language of benefits and burdens will not by itself resolve the most difficult dilemmas, since irreconcilable differences can always be reexpressed 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 judgments of social worth. [Return]

[6] Delegates acknowledge that there is some distrust of physicians' ability to fulfill such a role, especially if they do so on their own without incorporating the views of others. [Return]

[7] Howard Brody: An interesting example of international disagreement arose around the proper mechanisms for audit of these difficult cases. The current trend in the U.S. is toward reliance upon institutional ethics committees (IEC's) to ensure a multidisciplinary forum in which all points of view on a controversial Issue can be openly discussed. The IEC concept is quite foreign to the patterns of professional practice, and apparently to the self-image of the physician, in Britain and Europe. (There are exceptions, however; a network of IEC's currently exists in the Netherlands.) However, the acceptance of the IEC in the U.S. and opposition to it in Europe may be overstated. In the U.S. physicians objected strenuously only a few years ago to any suggestion that a committee, especially a committee that includes non-physicians, might have a role in advising or overseeing their decisions. Today, many U.S. physicians have altered their views on this, but many remain steadfastly opposed to any committee oversight of this type. In Britain and the rest of Europe, many specialized units, such as newborn intensive care units, have assembled multidisciplinary teams of health workers to manage the day-to-day care of patients; and difficult cases will commonly be discussed at length within these teams. The outcome may well be almost indistinguishable from IEC review in the U.S.
 

A good deal of the movement toward the IEC mechanism in the U.S. in the past decade resulted from government interventions in the form of the Baby Doe regulations (based on Title II - Amendments to [page 18:] 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 U.S. physicians would opt for no review. But when faced with a choice between committee review within their own institution and review by Federal investigators, most U.S. physicians became quite enthusiastic about the former. [Return]

[8] A useful summary of these mechanisms appears in The Hastings Center Report (Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying, op cit.: 24-26). [See Appendix].

[9] Howard Brody: 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 physician who provides a part of this protection. This is not to say that if patients and the general public simply trust physicians, all will be well. Physicians 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 audit the decision process (whether or not a later audit occurs), demonstrates trustworthiness and provides (in our opinion) 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 U.S. Federal Government between 1982 and 1984. This is illustrated strikingly at two places, one of which is our acceptance of quality-of-life judgments regarding seriously ill infants. Underlying the entire Baby Doe Initiative was the view that quality-of-life judgments are morally unacceptable and in all cases count as inappropriate judgments of social worth. The counter-argument, accepted unanimously by this working group, is that quality-of-life judgments 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 judgments. The other striking divergence from the Baby Doe approach in our consensus concerns the discretion of physicians 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.

Commentary on the Baby Doe guidelines in the U.S. ought to include recognition of the current status of the law and the amount of discretion that now exists for U.S. physicians and parents in these cases.

 U.S. neonatologists widely agree that the law is believed to require overtreatment of infants, and this results in practice in many terminally ill infants receiving inappropriately aggressive care for long periods. This Is an inaccurate interpretation of what the law requires. Current U.S. Federal law simply mandates that states that wish 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 physicians, parents, or hospitals for non-treatment are contained within the law. (Murray, TH. The final anti-climatic rule on Baby Doe. Hastings Center Report 1985; 15:5-9. See also Angell, M. Handicapped children: Baby Doe, and Uncle Sam. New England Journal of Medicine 1983; 309:659-661.) If U.S. neonatologists employ overly aggressive treatment, they cannot blame it on the current state of U.S. law. [Return]
 
 

[page 19:]

PART IV: SCARCITY[1]

Growing needs and demands, a growing range of increasingly costly medical options, and diminishing resources compel us to recognize that it is not feasible to offer all beneficial treatments that are medically possible to all patients. Necessarily, all communities face scarcities. Some instances of scarcity can be addressed by a particular allocation of funds. Others, such as a shortage of organs for transplant, may involve absolute limitations which may not be resolved easily within the apparently acceptable range of ethical choices. Scarcity, by definition, requires choice, and any choice in the context of scarcity requires forgoing alternative choices. 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. Honest responses to situations which require choice may, on the other hand, yield long-term advantages. Scarcity forces societies and institutions to establish priorities which may give rise to more efficient resource use, such as devoting more resources to those medical circumstances where the returns in terms of health outcomes are likely to be the greatest. In determining priorities, given the scarcity of health resources, the following concepts play critical roles:
 
1. The principle of justice requires universal access to an acceptable, decent minimum of basic health care.[2]
 
2. What constitutes this acceptable, decent minimum of basic health cam will depend on the particular society's general level of affluence and other priorities and hence will vary not only from culture to culture, but from time to time.[3] The principal task is to assess other competing values[4] and to make judgments about which health care needs are most pressing and which responses to those needs are reasonable and proportional.
 
3. When a society decides to declare a right to certain health services for all, it must incorporate into that decision a willingness to give up alternative uses of those resources necessary to deliver such care.
 
4. If medical decision making emphasizes cost-effective therapies,[5] the burdens of satisfying the desired universal access will be markedly reduced.[6]

5. Sometimes relatively unfettered market transactions can do a good job of delivering cost-effective health care products and services, but, even when market processes deliver efficiency, they do so at the cost of equitable access; thus, the market place cannot be the sole determinant of access and priorities.
 
 

GUIDELINES

With these concepts in mind, the following guidelines should be considered:

ESTABLISHING LIMITS AND PRIORITIES

1 Society must establish the limits and the priorities for life-sustaining treatment options.
 
2. Processes used to establish such limits must be, and be perceived to be, open and fair.
 
3. Cost effectiveness should be used whenever feasible to inform decisions about appropriate life-prolonging treatments in particular circumstances. Cost Effectiveness Analysis (CEA) should incorporate the best available scientific information about the results of the therapies being considered and all appropriate medical and non-medical costs and benefits —including an assessment of the patient's quality of life as a result of the proposed therapies. Although CEA is an invaluable and indispensable tool in making ethical decisions, it is not a simple formula and must not be naively applied. Several caveats are noteworthy. CEA, like all analytical frameworks, requires accurate data which may be extremely difficult and expensive to obtain. Care must be taken to be sure that the interpretation of the data is free from unwarranted extrapolations. Finally CEA must be tempered by sensitivity to human differences and case by case application, based on the assessment of particular benefits and burdens for individual patients.[7,8,9,10]

4. CEA-based information, guidelines, and limitations should be quickly and widely distributed.
 
5. Society must be willing to adjust its expectations so that its selected limits become accepted practice and/or legal norms.
 
6. Both ethical and effective policy require that institutions conspicuously publicize any restrictive or prescriptive policy rules in advance of patient admission.
 
7. If institutional limits imply that physicians must deny care to some patients, both the physicians and the institutions have an especially strict obligation to weigh burdens and benefits in selecting care and treatment.[11][page 20:]
 
8. Patients do not have a right to treatment which has no reasonable expectation of benefit.
 
 

SOCIAL OBLIGATIONS

9. If treatment is denied on the basis of a social decision,[12] such denial must not be disguised as a medical decision.[13]
 
10. When physicians believe that care is being withheld improperly, they are obliged to protest on behalf of their patients.
 
11. Private purchase of health care necessarily produces inequities. When the private purchase of health care significantly impinges on the fair distribution of available medical resources (as in the availability of organs for transplant) or on a society's ability to provide an acceptable, decent minimum of basic health care, such private purchase could be restricted.[14]
 

Notes to Part IV

[1] The delegates were unanimous in their belief that this section should be regarded more as a statement in process than a final document. Some felt that for that reason it would have been better to withhold it from initial publication of these guidelines. The majority, however, felt that this preliminary version accurately represents the directions that our final deliberations will probably take us and, in any case, will be provocative of important discussion of these issues and should not, therefore, be withheld from publication at this time. [Return]
 
[2] Some argued that this requirement of a decent, minimum, basic health care derived not so much from a principle of justice as from the obligations societies have to benefit their members. [Return]
 
[3] Cf. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 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.
 
[4] Editor's note: In this sentence the delegates were affirming that it is each particular society's responsibility to determine how highly it values health care in comparison to the other things it values (e.g., education, defense, and various forms of social welfare) as well as to determine which health care needs are more important than others. An example of the latter of these two responsibilities would be the recent decision in the U.S. by the Oregon state legislature to limit funds for heart transplants in favor of increased funds for prenatal cars. [Return]
 
[5] Editor's note: The signatories of the consensus statement were in agreement, both in the working group sessions and the plenary sessions, that cost effectiveness was to be understood in this document in very broad terms. One delegate characterized our understanding of cost effectiveness analysis as essentially applying the "benefits-burdens test" to society as an aggregate patient—being sure to count as "benefits" not only the appropriate interests of others than the patient (family, community, society), but also the kinds of psychological benefits mentioned by Fredrick Abrams in the next note, and being sure to count as "burdens" human and personal "costs" as well as medical expenses. The concerns expressed by delegates over the importance of understanding a cost effectiveness approach broadly and applying it carefully are expressed in guideline number 3. and in several of the study notes, especially numbers 7, 8, 9, and 10 below. [Return]

[6] Fredrick Abrams: Cost effective treatment should not necessarily mean the cheapest treatment. It must include important but impossible-to-measure criteria such as relief of anxiety from a negative x-ray, discovery of diabetes in a patient who will come in only for a pap smear, perhaps more often than a pap smear is warranted for diagnosing cancer, and the fact that a procedure that rarely (but sometimes) diagnoses a serious condition still is 100% effective for the few persons for whom the diagnosis is made. [Return]
 
[7] Knut Erik Tranoy: CEA should not be used as the sole criterion of medical decision making. It must always be supplemented by the delicate and difficult weighing of the quality-of-life considerations against more measurable parameters. [Return]
 
[8] Howard Brody: Some criticisms of CEA as a tool for health policy and resource allocation have appeared in the medical ethics literature. Sadly, many of these criticisms arise from a misunderstanding of CEA, or else from a basic rejection of the notion that ethical policy choices ought to be made by means of what seems to be strictly an economist's tool.

Generally CEA employed as envisioned in these guidelines would be ethically unobjectionable. There are, however, potential ethical difficulties with CEA, and case-by-case analyses are required to determine when such problems arise. Among the types of problems are: oversimplification of complex calculations; inaccuracy or inadequacy of data used for such calculations; and inappropriate extrapolations of data about populations to decisions about individuals.

First, CEA requires that one logically structure the problem. The more options one considers and the more distant consequences one includes in one's purview, the more complex the calculations become. [page 21:]

It is very tempting to reduce all decision trees to two or three main branches and to render all medical choices as dichotomous. But an oversimplified construction of the problem may misrepresent the actual medical situation even though the numerical data are accurate; and the simplifying assumptions may be very hard for the inexperienced reviewer (including most policy-makers) to detect.
 
Second, CEA requires that one plug in accurate data; and the data required for CEA of many common medical problems are difficult to obtain. Sometimes, the available data may come from differing populations of patients and questionable extrapolation may be required to apply those data to the patients actually under discussion. These problems (unlike the problems with the logical structure of the basic problem) can be mitigated by appropriate sensitivity and threshold analyses.

Third, ethical problems arise whenever one masses utility data (quality-of-life assessments) among groups of patients and then makes decisions about what treatment to make available. If 90% find a certain level of function unacceptable, does this justify denying that treatment to the other 10% who would welcome it, based on arguments of efficiency? The problem is less that of denying individual choice based on efficiency and more the problem of disguising real individual differences by the way that the data are compiled in the first place. [Return]
 
[9] David Schiedermayer: Part of the problem with the term "cost-effectiveness," as Doubilet et al pointed out (New England Journal of Medicine 1986; 4253-256) is that it may imply low cost-benefit ratios, cost-savings, or even willingness-to-pay. While explicit prognostic admission policies for say, the ICU, may be more acceptable in the first sense of "cost-effectiveness" than in the latter two senses, the usefulness of even this form of CEA-based information is limited. Among nonsurvivors in the ICU, the highest charges are incurred in caring for patients thought to have the greatest chances for recovery, and among survivors, the highest charges occur In those thought to have the lowest chance for recovery (Lewandowski W, Daly B, McClish DK, Juknialis BW, Youngner SJ. Patients' and Families' preferences for medical intensive care [Journal of the American Medical Association, 1988; 260:797-802]). 1 want to emphasize the statement's caveats that CEA is not a simple formula and cannot be applied to the clinical arena without careful consideration of the assumptions of the model and with sensitivity to the individual patient's situation. When patients are critically ill, the relationships between prognosis, resource expenditure, and clinical outcomes are exceedingly complex. [Return]
 
[10] Merton Finkler: All analytical frameworks require sound, perhaps expensive, data as well as carefully drawn Interpretations. [Return]
 
[11] Howard Brody: In the U.S. the term "gatekeeper" has been in evidence since about 1983 to describe the physician whose decisions deny some possibly beneficial treatments to some patients with the aim of conserving scarce resources. Both prepaid medical plans like Health Maintenance Organizations (HMO's) and prospective payment systems for hospital care (the most common of which is Diagnostic Related Groups [DRG's]) require gatekeeping decisions. Two basic arguments have appeared in the literature: 1) all financial gatekeeping presents an unethical conflict of interest; or 2) gatekeeping may be ethical so long as the honesty clause (above) is adhered to and patents are well informed as to the basis upon which medical decisions are made. Our guidelines essentially endorse gatekeeping by charging physicians to weigh the burdens and benefits of treatment carefully and to serve as advocates for patients who may be denied dearly beneficial treatment. European physicians are comfortable and skilled at such gatekeeping arrangements and have a track record of providing high-quality care while avoiding profligate use of expensive technology; U.S. physicians may profitably learn from their example. [Return]
 
[12] Editor's note: For example, that a society's funds would be better spent on prenatal care than on heart transplants. [Return]
 
[13] Strong feeling was expressed by one delegate that perhaps this was too harsh a requirement both from the perspective of those individuals who would be greatly upset to learn of such decisions and from the perspective of utility or public welfare; for example, when a disgruntled patient obtains widespread media coverage with resulting adverse effects for a useful medical policy. [Return]
 
[14] Howard Brody: It is in the area of social policy concerning allocations of scarce health resources that international comparisons may be most instructive. Both the U.S. 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 U.S. 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, one who was denied basic health care 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 U.S. lacks any true system of providing care equivalent to that in European nations. (Indeed, if the U.S. adopted a system, these decisions could no longer be disguised, and it may be the reluctance to take any responsibility for such decisions that [page 22:] makes U.S. politicians favor 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 never 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 physicians 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. [Return]

[from inside front cover:]

AUTHORS OF "THE APPLETON CONSENSUS: SUGGESTED INTERNATIONAL GUIDELINES FOR DECISIONS TO FORGO MEDICAL TREATMENT"

NON-AUTHOR SUPPORTERS

[from page 15:]
 

TABLE I: GUIDELINE WORKING GROUPS

PART I: DECISIONS INVOLVING COMPETENT PATIENTS OR PATIENTS WHO EXECUTED AN ADVANCE DIRECTIVE BEFORE BECOMING INCOMPETENT

Raanan Gillon, Chair

 Pieter Admiraal

 Gunnar Dahlstrom

 John Dawson

 George Robertson

 David Schiedermayer

 Susan Wolf

 Stuart Youngner

PART II: DECISIONS INVOLVING PATIENTS WHO WERE ONCE COMPETENT, BUT ARE NOT NOW COMPETENT, WHO HAVE NOT EXECUTED AN ADVANCED DIRECTIVE

Joanne Lynn, Chair

 Ronald Cranford

 Nancy Dickey

 Heleen Dupuis

 

 Grant Gillett

 Terrence Meece

 Arnold Rosin

 James Snyder

 Cees van der Meer

PART III: DECISIONS INVOLVING NEONATES AND PATIENTS WHO ARE NOT NOW AND NEVER HAVE BEEN COMPETENT

Howard Brody, Chair

 A.G.M. Campbell

 Nancy Homburg

 Dale Anne Singer

 John Stanley

 Avraham Steinberg

 Margaret Wallace

PART IV: SCARCITY

Fredrick Abrams, Chair

 Clark Boren

 Merton Finkler

 Shimon Glick

 John Mielke

 Thomas Murray

 John Paris

 Povl Riis

 Knut Erik Tranoy

[from page 22:]

BIOGRAPHICAL INFORMATION FOR THE AUTHORS OF "THE APPLETON CONSENSUS"

Fredrick R. Abrams, M.D., is the associate director of the Center for Health Ethics and Policy at the Graduate School of Public Affairs of the University of Colorado at Denver, an assistant clinical professor of obstetrics and gynecology at the University of Colorado Health Sciences Center, and is in the private practice of gynecology in Denver, Colorado.
 

Pieter V. Admiraal, M.D., Ph.D., F.R.S.M., is the senior anesthetist at the de Graaf Hospital in Delft, Holland. He is an international lecturer on euthanasia, terminal care, and pain treatment and has published many articles on euthanasia as well as Justifiable Euthanasia: A Manual for the Medical Profession.
 

Clark H. Boren, M.D., is a practicing surgeon at the Fox Valley Surgical Associates, Appleton, Wisconsin. Since 1980, he has had staff appointments at Appleton Medical Center, St. Elizabeth's Hospital, and the Theda Clark Regional Medical Center (Courtesy Staff).
 

Howard Brody, M.D., Ph.D., has been an associate professor of family practice and philosophy and coordinator of the Medical Humanities Program at Michigan State University since 1980. His books include: Ethical Decisions in Medicine (1981), Placebos and the Philosophy of Medicine (1980) and Stories of Sickness (1987).
 

A.G.M. Campbell, M.B., F.R.C.P. (Edin.), is head of the department of child health (Pediatrics) at the University of Aberdeen and has been consultant Pediatrician at the Royal Aberdeen Children's Hospital since 1973. He was coauthor of the 1973 Duff-Campbell Report: "Moral and Ethical Dilemmas in the Special Care Nursery," which was published in The New England Journal of Medicine.
 

Ronald E. Cranford, M.D., has been associate physician in neurology and director of the Neurological Intensive Care Unit, Hennepin County Medical Center, Minneapolis, Minnesota, since 1971 and has been an associate professor of neurology at the University of Minnesota since 1982.
 

Gunnar Dahlstrom, M.D., is emeritus professor of medicine in Uppsala, Sweden. He served as head of the Department of Lung Medicine at the Uppsala University Hospital and as professor of medicine at the University of Uppsala from 1964-1981. He also served as dean of the Faculty of Medicine from 1970-78.
 

John D. Dawson, M.B., B.S., L.M.S.S.A., D.A., M.R.C.G.P., has been undersecretary of the British Medical Association, head of Professional, Scientific and International Affairs Division, London, England, since 1981. He has been with the British Medical Association in varying capacities since 1976.
 

Nancy W. Dickey, M.D., has been a member of the American Medical Association's Council on Ethical and Judicial Affairs since 1980 and is an associate clinical professor in the department of family medicine, University of Texas Medical School at Houston.
 

Heleen M. Dupuis, Ph.D., is professor of bioethics in the faculties of medicine and of philosophy at Leiden University in The Netherlands. She has written five books and approximately eighty articles and essays.
 

Merton D. Finkler, Ph.D., has been associate professor of economics at Lawrence University, Appleton, Wisconsin, since 1985. In 1987 he was a Robert Wood Johnson Faculty Fellow in Health Care Finance at the Kaiser Foundation Health Plan.
 

Grant Gillett, M.D., Ph.D., F.R.A.C.S., (neurosurgery), has been a fellow of the Royal Australasian College of Surgeons since 1982 and was a fellow in philosophy at Magdalen College, Oxford, and a research associate of the Ian Ramsey Center, St. Cross College, Oxford, England, from 1986-1988. Currently he is senior lecturer in medical ethics in the University of Otago Medical School, Dunedin, New Zealand.
 

Raanan Gillon, B.A., M.B., B.S., F.R.C.P., is a physician at the Imperial College Health Service, London, England, which he has directed since 1982, editor of the Journal of Medical Ethics, a deputy director of the Institute of Medical Ethics, a senior fellow at the Centre for Medical Law and Ethics, King's College, London University, and director of teaching King's College Master's Course in Medical Law and Ethics.
 

Shimon Glick, M.D., has been dean of faculty of health sciences at Ben Gurion University of the Negev, Beer Sheva, Israel, since 1986, and a professor of medicine there since 1974. He also serves as head of the internal medicine department at Soroka University Hosptial.
 

Nancy Homburg, M.D., is a physician in the specialty of family practice at the LaSalle Clinic, Appleton, Wisconsin; she has practiced then for the past ten years and serves on the clinic's education, marketing, quality assurance, and medical recovery committees. [page 23:]

Joanne Lynn, M.D., M.A., is an associate Professor and acting director of the Center for Aging Studies and Services and codirector of ICU Research at George Washington University, Washington, D.C. She also serves as the medical director for the Washington Home and Hospice of Washington. She has written chapters in and edited By No Extraordinary Means: The Choice to Forego Life-Sustaining Food and Water ( 1986).

Terrence Meece, M.D., was director of the Fox Valley Family Practice Residency, Appleton, Wisconsin, and associate professor in the University of Wisconsin School of Medicine from 1986-89. Currently, he is medical director for the Kimberly Clark Corporation in Coosa Pines, Alabama.

John Mielke, M.D., has been an active staff member in the field of cardiology at Appleton Medical Center and at St. Elizabeth's Hospital, Appleton, Wisconsin. since 1965. An associate of Appleton Cardiology Associates, he is on the consulting staff of nine northeastern Wisconsin hospitals.

Thomas Murray, Ph.D., has been director of the Center for Biomedical Ethics at Case Western Reserve University School of Medicine, Cleveland, Ohio, since 1987. From 1984-1987, he was a professor of ethics and public policy at the Institute for the Medical Humanities of the University of Texas Medical School Branch, Galveston, Texas.

John J. Paris, S.J., Ph.D., Ph.L., is a professor of social ethics at Holy Cross College, Worcester, Massachusetts, a clinical professor of community health at Tufts Medical School, and an adjunct professor of medicine at the University of Massachusetts Medical School.

Povl Riis, M.D., is a physician-in-chief at the Herlev University Hospital and a professor of internal medicine at the University of Copenhagen. Since 1957, he has been editor-in-chief of the Journal of Danish Medical Association, and, since 1979, he has served as chairman for the Central Scientific Ethical Committee of Denmark.

George S. Robertson, M.D., F.F.A.R.C.S., is currently consultant anaesthetist at the Aberdeen Royal Infirmary, Aberdeen, Scotland, and has been an Honorary Senior Lecturer at the University of Aberdeen since 1969. From 1986 to 1988 he served on the King's College Centre for Medical Law and Ethics Working Party on Living Wills and Durable Powers of Attorney.

Arnold Rosin, M.B.CH.B.(Glasgow), M.R.C.P (Glasgow; London), F.R.C.P.(London; Glasgow), is chief of the Geriatric Department at the Shaare Zedek Medical Center, Jerusalem, Israel, and has served in that capacity since 1977. He has written several book chapters and articles.

David Schiedermayer, M.D., practices general internal medicine at the County Hospital in Milwaukee and teaches clinical ethics to junior medical students on wards. He is the associate director of the Center for the Study of Bioethics at the Medical College of Wisconsin.

Dale Anne Singer, M.D., a fellow in pediatric hematology and oncology at the University of Michigan, Ann Arbor, Michigan, was an associate clinical professor at Michigan State University, East Lansing, for eight years while practicing general pediatrics with a special interest in children with chronic diseases.

James V. Snyder, M.D., has been a professor of anesthesiology in the division of critical care medicine (department of anesthesiology) at the University of Pittsburgh School of Medicine, Pittsburgh Pennsylvania, since 1983. He also serves as associate medical director of the surgical intensive care unit and as medical director of the intensive care unit laboratory at Presbyterian-University Hospital.

John M. Stanley, Ph.D. is the Edward F. Mielke Professor of Ethics in Medicine, Science and Society at Lawrence University, Appleton, Wisconsin. Currently teaching in and directing Lawrence University's Program in Biomedical Ethics, he has taught at Lawrence since 1961.

Avraham Steinberg, M.D., has been an attending physician in the Child Neurology Division at the Bikkur Cholim Hospital and Department of Pediatrics, Shave Zedek Medical Center, Jerusalem, Israel since 1982. The founder and first editor of ASSIA, a quarterly for issues in medicine and Jewish law, he also has edited the four volume ASSIA Anthology.

Knut Erik Tranoy, Ph.D., M.A., is professor of medical ethics on the faculty of medicine at the University of Oslo, Oslo, Norway. He has been a professor of philosophy at the University of Bergen (1959-78) and at the University of Oslo (1978-85).

Cees van der Meer, M.D., has served as the chairman of the medical ethics committee of the Free University Hospital in Amsterdam, The Netherlands, since 1970. He lectured in endocrinology at the Free University (Vrije Universiteit) and became professor of medicine and served as head of the department of internal medicine until 1987.

Margaret Q. Wallace, R.N., L.L.B., a lecturer in law in the School of Management at the University of Canberra, Australia, was a visiting faculty member of the Medical Humanities Program at Michigan State University in 1988-89.

Susan M. Wolf, J.D., has been the associate for law at The Hastings Center, Briarcliff Manor, New York, since 1985. She is a frequent lecturer on terminating life-sustaiining treatment and on medical technology.

Stuart J. Youngner, M.D., is an associate professor of psychiatry and medicine at Case Western Reserve University School of Medicine, Cleveland, Ohio, where he is also on -die faculty of The Center for Biomedical Ethics. He is chairman of the ethics committee at University Hospitals of Cleveland.

[from page 11:]
 

Glossary

CEA: Cost Effectiveness Analysis. Analysis of the likely benefits in comparison to the likely costs and other burdens in a particular treatment, a treatment modality in general, a program or unit in a hospital, or any other analyzable element of health care delivery. A systematic analysis of something used or usable in medicine to see if it is worth using. (See notes 5 to 10 in Part IV.)
 

DRG: Diagnostic Related Groups. A system through which an insurance payer sets limits on compensation for a particular condition. Originally instituted by Medicare to limit compensation for hospitalization, a similar system is now used in many health insurance programs in the United States.
 

HMO: Health Maintenance Organization. Any of several varieties of group health insurance systems in which all members of the group pay a fixed rate in advance in return for whatever medical treatment they will need for the period of membership — usually one year. One prominent type of HMO in the United States salaries physicians much in the same way that European national health services do. Others contract physicians on a fee-for-service basis.
 

ICU: Intensive Care Unit. Also known as Critical Care Unit (CCU), the unit in a hospital equipped and staffed to supply necessary full-time management of critical care cases.
 

IEC: Institutional Ethics Committee. A committee or consultation group established by a hospital or a group of cooperating hospitals or physicians to systematically examine problematic cases involving difficult ethical decisions, Most hospital ethics committees are advisory and consultative rather than regulatory. though increasingly they are used as conflict resolvers for hospitals and doctors short of involvement of courts. (See note 7 to Part III and note 10 to Part II.)
 

PVS: Persistent Vegetative State. A permanent state of unconsciousness characterized by periods of arousal, sleep-wake cycles, open eyes, and involuntary movement, but permitting neither cognition nor sentience. (see note 17 to Part II.) 

[from page 24:]

APPENDIX

The following excerpt from Guidelines on the Termination of Life- Sustaining Treatment and the Care of the Dying, A Report by the Hastings Center (Hastings Center, Briarcliff Manor, N.Y., 1987, pp. 24-26), provides a summary of mechanisms to aid or review the physician's decisionmaking in cases where a patient lacks a surrogate.