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Regulating Death.

Carlos F. Gomez has written a modest book that makes a modest contribution to the burgeoning literature concerning active euthanasia. In January 1989 he interviewed nine persons (seven physicians, an ethicist, and a relative of a deceased patient) who described twenty-six instances of euthanasia in the Netherlands.(1) In those interviews Dr. Gomez sought to examine whether Dutch medicine conforms to the norms for euthanasia established by the Dutch courts(2) and medical establishment [57-58],(3) and to "analyse the policy implications" [18]. As to the former goal--appraisal of Dutch practice of euthanasia--Gomez succeeds in demonstrating both variations in the interpretation of the applicable guidelines and deviations from those guidelines. As to the latter goal--assessment of policy implications--the book largely fails. Regulating Death by no means convinces the reader that euthanasia is inherently unregulable and prone to evil exploitation.

This review describes both the convincing points made by Gomez and the deficiencies in his analysis. In addition, it underscores some implications from the data that Gomez does not focus upon and highlights some crucial, unresolved issues in the euthanasia debate.

Purported Deficiencies in the Dutch Scene

Gomez's book starts with some sound premises. He notes that candidates for voluntary active euthanasia constitute a vulnerable population. He convincingly describes the weariness and anxiety of people debilitated by severe illness or chronic conditions, and/or wracked by pain. Gomez also describes the minimum prerequisites for euthanasia as outlined by the Dutch courts and medical establishment--an informed judgment by a competent patient, unbearable suffering, and medical consultation.(4) However, his efforts to document deviations from those established guidelines and to probe the implications for vulnerable populations are not uniformly sound. I turn to some specifics of Gomez's study.

Genuine Informed Consent

Voluntary active euthanasia obviously requires a competent patient. This sometimes demands inquiry into the mental status of a patient, as severely afflicted individuals may be prone to extreme depression or other psychopathology.(5) Voluntary euthanasia also requires an informed patient, meaning a patient to whom the full range of medical and social options has been explained. A genuinely informed patient must understand not only potential palliative treatment but also social services available to ease isolation and suffering. All this is consistent with the Dutch guidelines, which stress both voluntariness of decision making and exploration of alternative possibilities for relieving suffering.(6)

Several of Gomez's twenty-six case histories relate to patients who were incompetent at the time euthanasia was administered. Those instances will be addressed below in the subsection entitled "A Slide into Non-Voluntary Euthanasia." The focus for the moment is on those patients ostensibly competent at critical times in the decision-making process.

As to this latter class, Gomez presents several "case histories" in which it is simply unclear whether the attending physicians carefully scrutinized competency or presented avenues other than euthanasia for the relief of suffering [72-73, 83]. This lack of clarity may stem from fuzziness of the declarants' memories and the anecdotal nature of the histories, rather than from actual deficiencies in the decision-making process. Gomez concedes that it is "unclear" whether certain patients were offered palliative regimes [112-13]. Moreover, he recounts other case histories in which a whole medical team was involved, thus suggesting that in those instances all the prescribed prerequisites to voluntary euthanasia had been met. In short, the Gomez study seems rather inconclusive as to whether Dutch physicians take sufficient care in ensuring that candidates for euthanasia are competent, fully informed, and firm in their resolve.

The Criterion "Unbearable Suffering"

Gomez laments utilization of a standard of "unbearable suffering" as a prerequisite to administration of voluntary euthanasia. For him, the standard is "probably unenforceable" because it is not amenable to post-hoc checking [122-23].

It is naive to think that suffering is susceptible to objective measurement. Gomez himself concedes that unbearable suffering "is a uniquely personal, subjective description of one's state" [99]. Suffering is composed of a variety of intangibles, including physical pain, emotional pain, and apprehension about prospective injuries. None of these is readily subject to quantification.

The real issues are accurate diagnosis and presentation to the patient of all alternatives. A person experiencing subjectively unbearable suffering must be made aware of the prognosis, including any medical uncertainty, and of the medical and social palliatives available to relieve suffering. These are real concerns but not unique to the context of active euthanasia. Identical issues arise concerning patient rejection of life-preserving medical intervention. A patient may be prematurely impelled to decline life-preserving care if inadequate pain relief is being provided or if the patient is unaware of social services which might ease a sense of isolation or if the patient is pathologically obsessed with a sense of being a burden on others. In any medical decision entailing fatal consequences, such concerns must be confronted; certain procedural precautions are indeed appropriate, as will be discussed below.

Gomez would apparently prefer limiting medical decisions with fatal consequences to patients in a terminal state, meaning those facing unpreventable death within a short time span. A "terminal condition" requirement ignores the important needs of patients--often those afflicted with degenerative diseases or severe chronic debilitations--facing prolonged periods of suffering and/or indignity even before the end-stage of a fatal illness. Such a requirement has been deservedly criticized in the context of advance medical directives.(7) It has been repudiated in the American jurisprudence addressing a competent patient's right to reject life-preserving treatment.(8) While the Dutch have sometimes considered a terminal condition limitation on active euthanasia, they have not adopted one.(9) For me, an imminence-of-death criterion is not generally a constructive element in the context of death and dying decisions. Whether it would be a useful adjunct to any initial implementation of active euthanasia is debatable; the purpose would be to allay apprehensions of abuse.

Absence of Scrutiny or Review

Gomez expresses serious concern about the degree of responsibility placed in the hands of individual Dutch physicians in administering active euthanasia [121-24, 130-35]. Dutch physicians are instrumental in assessing competency and obtaining informed consent, yet there is no detailed protocol governing performance of those tasks. (As noted, Gomez is not sure whether Dutch physicians practicing euthanasia take adequate care in assessing competency and presenting a full range of treatment alternatives.) Verification of the patient's medical condition is also a concern. Consultation with another practitioner is required by the relevant guidelines,(10) but Gomez suspects that such consultation is usually with a friendly colleague and therefore pro forma [see 166 n.25]. Moreover, one solo practitioner interviewed in the study apparently did not employ any form of medical consultation contemporaneous with implementation of euthanasia. Finally, Gomez laments the absence of any systematic review of euthanasia administration. Dutch physicians often do not list an accurate cause of death or report acts of euthanasia to the public prosecutor as required.(11)

The case histories described by Gomez do betray a distressing lack of standardization of procedures relating to competency assessment, informed consent, and medical consultation. Any tolerable system of voluntary euthanasia would be accompanied by procedures to safeguard against "well intentioned misuse and illintentioned abuse."(12) Gomez seems right to criticize the lack of uniform procedures in Dutch practice. But he seems wrong in concluding that adequate safeguards are unimaginable [138].

Gomez gives no real consideration to the kinds of processes which might be imposed as a prerequisite to voluntary active euthanasia. He gives no thought to the possibility of confining such conduct to institutional settings utilizing a team approach and a careful protocol to guide the team. He does not take note of the kinds of procedural safeguards imposed in some American jurisdictions when patients decline life-preserving medical intervention.(13) Nothing compels the state to rely solely on the integrity of individual physicians in administering a system of voluntary active euthanasia.

A Slide Into Non-Voluntary Euthanasia

Gomez points out with apparent alarm that a number of his case studies involve patients incompetent at the stage at which euthanasia is implemented. Six instances are reported, but I suggest that they are properly divisable into two categories not equally troublesome.

Four of the six instances cited involve what I term prospective autonomy--that is, the now incompetent patient had expressed his or her wishes while still competent and the wishes were implemented at a post-competency stage. [See cases #3, #19, #22, and #23, reported at 67-68, 83-86.] This extension of euthanasia to patients who gave advance instructions is not surprising. Advance medical instructions constitute a form of patient autonomy even though the patient subsequently becomes incompetent. Prospective autonomy is not identical to contemporaneous autonomy, but the central values of autonomy are served by respecting advance instructions.(14) Recognition of advance directives does go beyond the guidelines originally set out for Dutch euthanasia, but it is not an egregious deviation from those guidelines. Indeed, the Dutch are now considering additional guidelines to cover advance instructions.(15)

Two instances described by Gomez [cases #20 and #21, at 83-85] involve genuinely non-voluntary euthanasia (one a neonate born with grave impairments and the other an accident victim with horrible, fatal injuries who was fated to live only a short time). While the two cases of non-voluntary euthanasia would not, by themselves, establish a clearcut pattern, Dutch extension of euthanasia to non-voluntary cases (along the lines reported by Dr. Gomez) has been confirmed by other sources.(16) The extension of euthanasia to incompetent patients who never articulated their will is more alarming than recognition of advance instructions. That extension grossly deviates from the original authorization of voluntary euthanasia [case #23, reported at 67-68, 83-86]. It gives pause, as incompetent patients comprise a vulnerable population in the context of terminal decision making.

While extension of euthanasia to non-voluntary cases is indeed noteworthy, it is not really startling. In theory, a sharp line exists between grounding medical decisions on patient volition and grounding them on projections of patient welfare absent instructions issued by the patient while still competent.(17) Highest state courts in Missouri and New York, for example, declined to sanction terminal medical decisions in the absence of clearcut prior expressions from a now incompetent patient.(18) Those judges were unwilling to trust surrogates to make terminal decisions on behalf of now incompetent patients, absent prior instructions.

In practice, as the Dutch experience illustrates, a considerable impetus exists to extend the "benefits" of terminal medical decisions to incompetent patients. If a competent patient in excruciating, unrelievable pain would likely request and receive an end to suffering, a strong impulse exists to extend the same benefit to an incompetent patient in an identical condition who neglected to provide advance instructiosn. Similarly, if the vast majority of competent persons would consider a medical status to be intolerably undignified (for example, PVS), so that it seems contrary to a common conception of humane medical handling to maintain a patient in that status, the impulse is strong to provide an incompetent patient with relief from that dismal permanent limbo.

Many commentators--both proponents and opponents of active euthanasia--understand this natural tendency to extend relief to incompetent as well as competent patients.(19) The question then becomes whether this likely phenomenon (extension of active euthanasia to non-voluntary patients) dictates opposition to all authorization of active euthanasia. The answer to that question depends on the kinds of inquiries I will now address.

Implications for the Jurisprudence of Death and Dying

Concern for Abuse of Vulnerable Populations

Much of the current debate on euthanasia centers on the assertion that active euthanasia would be particularly subject to abuse.(20) As to competent patients, the concern is manipulation of consent to euthanasia by slanted presentation of the choices available and by application of subtle pressure. As to the natural tendency to include incompetent patients, the concern is elimination of weak and socially unwanted populations.

Gomez suggests that the Dutch framework for active euthanasia provides little assurance against abuse of vulnerable patient populations [135]. He laments the frequent absence of regularized consultation with neutral physicians, absence of systematic scrutiny of euthanasia administration, and failure of Dutch physicians to report cases to prosecutorial authorities. He further implies that institution of procedural safeguards would inevitably fail because the doctor-patient relationship is conducted in relative privacy.

My own assessment is that the fate of active euthanasia will not hinge on any potential for abuse peculiar to euthanasia. Even without active euthanasia, medical management of gravely afflicted patients provides plenty of opportunities for "exploitation" of patients if health care providers are so inclined. These opportunities include the manipulation of informed consent leading to withholding or withdrawal of life-preserving care, administration of analgesics with the incidental effect of shortening life, and removal of life support from incompetent patients. All of these opportunities currently exist under American legal doctrine governing medical decision making affecting critically ill patients. An eminent commentator, Yale Kamisar, has noted that whatever potential for abuse plagues active euthanasia also plagues withdrawal of life support.(21) Kamisar observes: "If clinicians are fallible and hospitals are bureaucracies, and if conflict, ambivalence, and the wish to harm are present in all clinical relationships, why permit the withholding of antibiotics, the disconnection of the respirator, and the removal of the feeding tube?"(22) Just as all medical management of fatally afflicted patients involves some hazards--whether in the context of cessation of life support or in the context of active euthanasia--all medical management can be made subject to careful procedural safeguards if necessary. Procedures can be designed and imposed for competency assessment, communication of full information to patients and their representatives, confirmation of prognosis, and scrutiny or review of individual cases. Some commentators argue that such procedural safeguards would be so complex and cumbersome as to vitiate any rights to have terminal medical decisions made. I disagree. The principal object is to end prolonged medical maintenance of patients facing severe degenerative conditions deemed too painful or too demeaning. That object would be significantly promoted even if procedural safeguards were imposed on terminal decision making. The procedures instituted could be expeditious enough to provide relief from the prolonged debilitated lingering which is the apprehension of many patients.

Nor is there much evidence drawn from current practices surrounding critically ill patients which suggests that elaborate procedures are necessary. Even in the delicate context of withdrawal of life support from incompetent patients, exploitation does not appear to have materialized. American jurisprudence is struggling to shape the standards to be used in decision making for incompetent patients; notions of substituted judgment and best interests must still be fleshed out.(23) Although the relevant legal doctrine is still evolving, medical abuse of vulnerable patients has rarely been documented.(24)

Even in the picture of active euthanasia in the Netherlands as drawn by Gomez, substantive abuse is not really demonstrated. The Gomez study documents deviation from prescribed guidelines, but not malevolent exploitation of patients. The two cases of non-voluntary euthanasia are not shocking. One involved a gravely impaired neonate; a decision had been made to cease life support, and euthanasia only hastened the infant's demise. The second case involved a gravely injured accident victim, unconscious and fated to survive only a short time. While the summary decision making processes surrounding the administration of euthanasia in these instances were clearly inappropriate, Gomez does not suggest that the substance of the decisions was wrong.

Gomez does not describe a single case in which euthanasia was tainted by physicians' despair, frustration, prejudice, or misdiagnosis. He does not describe a single instance in which a family's cupidity, mental anguish, or economic distress impelled a decision to administer euthanasia. In a passing reference to a documented case of apparent substantive abuse--a nursing home physician's wholesale implementation of non-voluntary euthanasia--Gomez indicates that the physician's conduct drew a substantial legal response [120].(25) In short, Regulating Death simply does not convince the reader that abuse of vulnerable patients is a necessary or even likely consequence of active euthanasia.

The Unresolved Issues

Beyond feared abuse of vulnerable patient populations, a number of other possible hazards impede acceptance of active euthanasia. These include: erosion of professional mores by medical willingness to facilitate dying (as opposed to exclusive focus on preservation of life); erosion of health care providers' morale by participation in administration of death; erosion of pateint confidence in the medical profession because of apprehensions about physician-caused death; generation of pressure on fatally stricken patients to accept death rather than to undergo life-prolonging care; curtailment of medical efforts to find ways to combat and palliate fatal afflictions in favor of the easy "out" of euthanasia; and weakening of society's commitment to caring for the dying in favor of the "abandonment" of patients to euthanasia.

These are open issues. Gomez's book contributes little to their resolution. He devotes little attention to the impact of active euthanasia on professional practice or morale,(26) or on patient confidence in the medical profession.

In addition, there remain some fundamental moral issues which are untouched by Dr. Gomez. Is there a moral difference between acquiescing in death by withdrawing medical care and causing death by euthanasia? Is there a moral difference between assisting a patient to die by providing the means for self-administered death and causing a patient's death by injection? (Throughout his book Gomez equates assisted suicide and active euthanasia).

Another important issue is how much American medical practice can draw from the Dutch experience.(27) There may be very significant distinctions between the Dutch and American health care systems. For example, Holland has a more universal system of health care delivery than the United States. Arguably, American difficulties in financing expensive terminal care create an artificial incentive to cease such care prematurely.(28) On the other hand, American physicians may be more risk aversive than Dutch physicians, and hence more likely to adhere to imposed guidelines. American physicians may be more accustomed to regulatory controls on their practice; Dutch physicians are seldom subjected to the oversight of malpractice litigation or other forms of professional control.(29) Finally, greater American experience in shaping standards for the medical handling of incompetent patients may provide greater assurance against abuse of vulnerable populations.

The Real Lessons

I have often wondered whether technical advances in pain relief and palliative medical care would obviate the drive toward active euthanasia. After all, the prime impetus for euthanasia has been relief of suffering. Perhaps, I have thought, modern techniques of palliative care would provide the relief sought.

Gomez's book helps to convince me that improved palliative care will not be a panacea furnishing relief for fatally stricken medical patients. Gomez ably describes the elements--beyond physical pain--which make life intolerable for many patients. He describes the weariness and the determination to avoid a prolonged, subjectively demeaning demise which motivate many patients seeking euthanasia [100-03]. His case studies confirm the roles that weariness, frustration about dependence, and sense of being a burden play in impelling requests for euthanasia. Victims of chronic debilitating conditions and degenerative diseases suffer anxiety about prospective indignity which often shapes their choices [76-77, 87-88]. These forms of emotional suffering will often remain even if palliative care relieves physical pain.

As noted, Gomez's study helps to confirm a natural tendency to slide from voluntary euthanasia into non-voluntary euthanasia. That tendency, in turn, underlines the importance of devising careful standards to govern the handling of incompetent medical patients. In the United States, the development of those standards is taking place in the context of cessation of life-preserving medical intervention. The relevant jurisprudence is still in its fledgling stages. That arena will demonstrate whether law, medicine, and society can devise adequate standards for determining when the lives of incompetent, afflicted patients can be relinquished. Until the evidence of success in that arena is convincing (and I am confident that there will be success), resort to active euthanasia seems premature.


(1)It would be easy to dismiss Gomez's study as hopelessly unscientific--a tiny sample selected in a rather haphazard fashion. He was well aware of the technical deficiencies of the study [89-93]. At one point he concedes that his concerns emerging from his study might actually be about "sporadic instances of abuse or potential for abuse that are a poor reflection of reality" [136]. However, the phenomena that Gomez describes have in significant part been verified by larger, more scientific surveys. See, e.g., deWachter, Euthanasia in the Netherlands, 22 HASTINGS CENTER REP. Mar.-Apr. 1992, at 24-26; van der Maas, van Delden, Pynenborg & Looman, Euthanasia and Other Decisions Concerning the End of Life, LANCET, Sept. 14, 1991, at 669; Keown, On Regulating Death, HASTINGS CENTER REP. (Mar.-Apr. 1992), at 42. Gomez's book, therefore, deserves to be addressed on its own terms rather than quibbled about as to scientific precision.

(2)Bracketed numbers in the text refer to pages in Gomez's book.

(3)The Dutch parliament has recently adopted many of these norms. See Simons, Dutch Parliament Approves Law Permitting Euthanasia, N. Y. Times, Feb. 10, 1993, at 1, col. 1.

(4)Concerning the criteria established in the Netherlands for active euthanasia, see Note, The Right to Voluntary Euthanasia, 10 WHITTIER L. REV. 489, 547 (1988); KNMG Guidelines for Euthanasia, 3 ISSUES IN LAW & MED. 429, 432 (1988); Feber, Abstract, The Vicissitudes of Article 293 of the Penal Code, 3 ISSUES IN LAW & MED. 455 (1988).

(5)See, e.g., Clark, Rational Suicide and People with Terminal Conditions or Disabilities, 8 ISSUES IN LAW & MED. 147, 153-57 (1992); Flick, The Due Process of Dying, 79 CALIF. L. REV. 1121 (1991); Herr, Bostrom & Barton, No Place to Go: Refusal of Life-sustaining Treatment by Competent Persons with Disabilities, 8 ISSUES IN LAW & MED. 2 (1992).

(6)KNMG Guidelines, supra note 4, at 431. Those guidelines also indicate that the firmness of a patient's euthanasia request should be tested via repeated inquiries. Id.

(7)See, e.g., Lerner, State Natural Death Acts: Illusory Protection of Individuals' Life-Sustaining Treatment Decisions, 29 HARV. J. LEGIS. 175, 188-90 (1992).

(8)See N. CANTOR, ADVANCE DIRECTIVES AND THE PURSUIT OF DEATH WITH DIGNITY ch. 1 (Indiana University Press, 1993) (forthcoming).

(9)See Feber, Abstract, supra note 4, at 465.

(10)KNMG Guidelines, supra note 4, at 433.

(11)See Jochemsen, Life-Prolonging and Life-Terminating Treatment of Severely Handicapped Babies: A Discussion of the Report of the Royal Dutch Society of Medicine on "Life Terminating Actions with Incompetent Patients," 8 ISSUES IN LAW & MED. 167 (1992). Jochemsen suggests that physicians will never accurately report so long as euthanasia nominally remins a criminal act. Id. at 170.

(12)See Brock, Voluntary Active Euthanasia, 22 HASTINGS CENTER REP. Mar.-Apr. 1992, at 14.

(13)See Matter of Farrell, 529 A.2d 404 (N.J. 1987); McKay v. Bergstedt, 801 P.2d 617 (Nev. 1990); Roach, Paradox and Pandora's Box: The Tragedy of Current Right-to-Die Jurisprudence, 25 U. MICH. J.L. REF. 133, 189 (1991).

(14)See Cantor, Prospective Autonomy: On the Limits of Shaping One's Post-Competence Medical Fate, 8 J. OF CONTEMP. HEALTH L. & POLICY 13, 16-22 (1992).

(15)Capron, Euthanasia in the Netherlands--American Observations, 22 HASTINGS CENTER REP., Mar.-Apr. 1992, at 31. Previously, a 1985 State Commission recommended the honoring of certain advance directives for euthanasia. See Leenen, Euthanasia, Assistance to Suicide and the Law: Developments in the Netherlands, 8 HEALTH POLICY 197, 203 (1987).

(16)See de Wachter, supra note 1, at 24, 26, & 29; ten Have & Welie, Euthanasia: Normal Medical Practice? 22 Hastings Cent. Rep., Mar.-Apr. 1992, at 35.

(17)See Richards, Constitutional Privacy, The Right to Die and the Meaning of Life: A Moral Analysis, 22 Wm. & Mary L. Rev. 327, 401 (1981).

(18)See Cruzan v. Harmon, 760 S.W.2d 408 (Mo. 1988), aff'd 110 Sup. Ct. 2841 (1990); In re Westchester County Medical Center, 531 N.E.2d 607, 534 N.Y.S.2d 886 (1988).

(19)See, e.g., Brock, supra note 12 at 20; J. RACHELS, THE END OF LIFE 180 (1986); Siegler, Comments, quoted in 21 HASTINGS CENTER REP., July-Aug. 1991, at 4; speech by Yale Kamisar, "Death and Dying: Assisted Suicide and Active Euthanasia Move to Center Stage" 44, at University of Michigan, Ann Arbor (Sept. 18, 1992).

(20)See, e.g., Kass, Foreword to C. F. GOMEZ, REGULATING DEATH ix; Childress, Dying Patients: Who's in Control? 17 LAW, MED. & HEALTH CARE 227, 230 (1989); PRESIDENT'S COMMISSION FOR THE STUDY OF ETHICAL PROBLEMS IN MEDICINE, DECIDING TO FOREGO LIFE-SUSTAINING TREATMENT 79-80 (1983); Newman Euthanasia: Orchestrating "The Last Syllable of...Time," 53 U. PITTS. L. REV. 153, 167-73 (1991).

(21)See Kamisar, When is There a Constitutional Right to Die? When is There No Constitutional Right to Live? 25 GA. L. REV. 1203, 1216-17 (1991); Kamisar, supra note 19, at 31-32. See also Mayo, Constitutionalizing the Right to Die, 49 MD. L. REV. 103, 144 n.221 (1990).

(22)Id. at 31.


(24)Indeed, the trend is to extend, not narrow, the domain of decision making on behalf of incompetent patients. Not only have many states adopted statutes authorizing durable powers of attorney for health care decisions, but approximately 20 states have adopted surrogacy statutes providing for family decision making on behalf of incompetent patients who have not designated health care agents for post-competence decision making. Thus, the trend is toward more, not less, reliance on the integrity of surrounding family and health care providers.

(25)The offending physician was prosecuted. Although the criminal proceeding failed because of tainted evidence, the physician was suspended and censured by a professional board.

(26)Gomez does remark at one point: "The notion that euthanasia has achieved a degree of acceptance and codification by the medical community receives some support from these cases" [116].

(27)See Battin, Seven Caveats Concerning the Discussion of Euthanasia in Holland, 34 PERSPECTIVES IN BIOLOGY & MED. 73 (1990).

(28)See McKinney, "Euthanasia as Public Policy: Rights and Risks" 8-9, paper presented at the Unitarian Universalist General Assembly (June 1989), arguing that in the United States the right to die can easily become a "duty to die."

(29)See Newman, Active Euthanasia in the Netherlands, in To DIE OR NOT TO DIE 123 (A. Berger & J. Berger, eds. 1990).
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Author:Cantor, Norman L.
Publication:Criminal Justice Ethics
Article Type:Book Review
Date:Jan 1, 1993
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