Be sure to read the fine print: will California legalize euthanasia?

Robert Frost once wrote of meeting a man from California,

a state so blessed,

He said, in climate, none had ever died there A natural death, and Vigilance Committees Had to organize to stock the graveyards And vindicate the state's humanity.

Much has changed since Frost's time, not the least in the way death occurs, but now a new risk to the state's humanity has arisen in the form of an initiative that will appear on the ballot in the November general election. If approved, Proposition 161--entitled "Physician-Assisted Death. Terminal Condition"--would make California the first state to legalize the performance of euthanasia by physicians acting at their patients' requests.

This is not the first time that such a proposal has been placed before American voters. The Hemlock Society, which was organized in the 1980s in Southern California, has been seeking an opportunity to put this question before the public for years and failed to qualify an initiative for the California ballot in 1988. A related organization, Americans Against Human Suffering (AAHS), succeeded in getting its "aid-in-dying" statute on the November 1991 ballot in Washington State. With that state's reputation for tolerance and liberality, it was not surprising that polls repeatedly showed a strong favorable majority. Nonetheless, on November 5, 1991, Washington voters rejected the proposal by a 54-to-46 margin.

Even before that defeat, AAHS had launched a second try in California. Beginning in October 1991, its state affiliate mounted a major campaign, with paid signature-gatherers and volunteers from a broad coalition of supporters, and succeeded in collecting better than 10 percent more than the 385,000 valid signatures required. Thus, California's Proposition 161 takes on special significance. The adoption of this radical change in the law would be momentous to Californians as well as for other patients who could come to the state for a final "magic bullet" to provide a swift end to their final illness. The polls thus far reveal strong support for Proposition 161 (and exceptionally few "undecideds") among Californians. In the barrage of other initiatives on the November ballot the public may have difficulty getting beyond media "sound bites" and giving Proposition 161 the serious attention it deserves. Leaving for others the analysis of the general risks and defects of physician "aid-in-dying," this essay will highlight internal problems and drafting defects in Proposition 161.

The problems with the initiative begin with its "Declaration of Purpose" which creates a context for the substantive provisions that follow. The Declaration affirms the importance of patient self-determination and states that the prolongation of life made possible by medical technology "may cause loss of patient dignity and unnecessary pain and suffering, for both the patient and the family, while providing nothing medically necessary or beneficial." Assertions like this give a good sense of why the initiative appeals to many people. But in also contending that "current state laws do not adequately protect the rights of terminally ill patients," the Declaration of Purpose falsely suggests that no legal mechanisms now exist for patients to avoid such "artificial prolongation" of life.

In fact, California has pioneered in the development of statutory and case law to protect the rights of patients regarding their treatment and death. The California Natural Death Act, enacted in 1976, updated in 1991, provided the impetus for U.S. jurisdictions; it allows adults to sign a "Declaration" at any time that directs their physicians to forgo life-sustaining treatment, including artificial nutrition and hydration, in the event of terminal illness or permanent unconsciousness. California again led the way with its Durable Power of Attorney for Health Care Act (1983), giving trusted "proxies" authority to carry out patients' wishes and protect their interests. By ignoring these statutes and relevant care law, the "Declaration of Purpose" suggests that Proposition 161 is needed to fill a gap that does not exist. Apart from this misleading language, two other aspects of Proposition 161 may give pause even to people who are sympathetic toward the idea of legalizing euthanasia: problems with its general framework, and deficiencies in its illusory safeguards.

THE GENERAL FRAMEWORK. Among the central features of Proposition 161, two bear special attention: the prominent role given to the "Directive" that people sign to record their desire for a quick and painless death, and the applicability of the statute to patients whose pain and suffering could be remedied short of being put to death.

Advance Directives. Proposition 161 states that "aid-in-dying"-defined as "a medical procedure that will terminate life ... in a painless, humane, and dignified manner," either administered by a physician or provided to a patient for self-administration--will be used when a "qualified patient" determines that the time has arrived and "communicate[s] that determination directly to the attending physician." The heart of being "qualified" is being a mentally competent adult who has been diagnosed by two physicians as suffering from an irreversible condition that will result in death within six months. Among the other requirements to be "qualified," the patient must have executed a "Directive" of a type specified by the statute.

Written "advance directives" have become a familiar part of the process of preparing for death. Consequently, their peculiarity in the context of the aid-in-dying statute could easily escape notice. The proposed statute sets forth the requirements and basic terminology of a legally acceptable Directive. The central features--that the document is effective until revoked, may be voluntarily executed by a mentally competent adult "at any time," and must be witnessed by two persons who meet certain qualifications--closely resemble those of Declarations under the Natural Death Act. In the latter context, an advance Directive makes sense because the purpose of the Natural Death Act is to permit people while competent to prepare statements of their wishes about withholding or withdrawing life-sustaining treatment as guides for decision making after the declarant becomes unable to participate.

In contrast, physician-assisted death is supposed to be administered only upon the contemporaneous request of a competent patient. If a "Directive" under the aid-in-dying statute were merely a written acknowledgment signed at the time of the request to provide documentation for the medical record, it would fit into the statute's purported framework of voluntary, competent choice. But by borrowing the idea of an advance directive from existing law, the authors of Proposition 161 have altered the framework in ways that undermine voluntariness.

First, the only purpose in providing that a Directive can be signed "at any time" is to permit--indeed, to encourage--people while still healthy to express their desire, in language supplied by the statute, "that my life shall be ended with the aid of a physician in a painless, humane, and dignified manner when I have a terminal condition or illness." Although a Directive is supposed to be revocable, its very existence may make some patients feel obligated to follow through. Besides such subtle and perhaps unrecognized effects on the declarant's thinking, the existence of a Directive may also alter the response of those who care for the declarant, by shifting the usual presumption that the declarant would want his or her life protected.

Second, by using the format of an advance directive--that is, something that can be written anytime and that becomes effective when needed in the dying process--the authors of Proposition 161 have set the stage for a simple amendment in the statute at a future date to drop the requirement that the request for aid-in-dying be made at the time of the procedure. Advocates for such a change would certainly argue that it did not open the door to involuntary euthanasia but merely allowed patients who have lost the ability to express their wishes to obtain the "painless, humane, and dignified" death that they had already expressed the desire to have.

It is noteworthy in this regard that the proposed Death with Dignity Act is already framed to make the Directive (not the oral request) the key determinant of aid-in-dying. For example, the annual report that hospitals and health-care providers must submit to the state has to list "the date when the Directive [not the request] was carried out," and the Directive (not the request) is the only written documentation required to be made part of each patient's record.

Intractable Pain. The single reason laypeople cite most frequently for supporting a statute like Proposition 161 is that it is inhumane to make patients suffer from intractable pain. Proponents of Proposition 161 repeatedly refer to the need to provide patients with death as an escape from pain. Opponents recognize that many physicians fail to use means that are now available to relieve virtually all pain, some of the most effective of which place control of administration into the patient's hands I Once appropriate means are made available, only a tiny fraction of patients will experience pain that cannot be relieved.

Nonetheless, as the Dutch have recognized in the rules framed by their courts and medical society for the tolerated practice of euthanasia in that country, the strongest moral case for "aid-in-dying" rests with this handful of cases with intractable pain. Yet Proposition 161 is not limited to such cases. The initiative rests on a framework allowing euthanasia and assisted suicide for any and all people with a prognosis of six months or less to live, not reserving this drastic remedy for the few cases of untreatable, unbearable suffering.

ILLUSORY SAFEGUARDS. The Initiative's Declaration of Purpose reassures voters that it "provides strong safeguards against abuse," but the actual protections are largely illusory.

Informed Choice. First, a good statute would ensure that a request for euthanasia must be knowingly and freely made. Yet Proposition 161 contains no requirement that when people sign a Directive or request aid-in-dying they be given any particular information about their medical condition and prognosis or about alternative treatments (including those aimed primarily at controlling symptoms and pain). A Directive can be signed essentially in the abstract, at a time when the patient is healthy and has no concrete information about the circumstances under which it would be given effect. Later, when the patient requests physician-assisted death, the only thing about the medical condition mentioned in the statute is that the patient must be certified to be terminally ill. The law does not require that the attending physician explore with the patient at that time the alternatives available to improve the quality of life.

Voluntary Choice. A second basic area for safeguards would be in preventing abuse of patients and ensuring true voluntariness. The authors of Proposition 161 point to the requirement that the Directive must be witnessed by two people not linked financially with the patient and that, in particular, one of these two must be an ombudsman or patient advocate in the case of nursing home residents. This provides scant protection. While witnesses are supposed to aver that the declarant "appears to be of sound mind and under no duress, fraud, or undue influence," the law specifies no methods or standards (or even any affirmative obligations on the witnesses) for substantiating this statement. Most significantly, this protection applies only to the Directive (which may be executed years before the active euthanasia), whereas no witnesses are mandated at the time of the actual request for euthanasia.

The lack of adequate safeguards for voluntariness among vulnerable patients is especially troubling as regards women with serious illnesses. Women typically outlive their spouses, for whom they are likely to have cared through terminal illness and death. (In fact, many women play the role of caregiver repeatedly, nursing their own parents and even their husband's through the dying process.) Once in the position of needing care rather than being able to give it, a woman may be all too open to the idea that everyone would be better off if she were no longer a burden on others and thus all too susceptible to a suggestion of a physician-assisted death. Thus, at least some "voluntary" requests for euthanasia may fall far short of the ideals of self-determination and human dignity proclaimed by the initiative.

As a safeguard against abuse, proponents of Proposition 161 point out that instances of aid-in-dying must be reported to the State Department of Health Services. But these annual reports to the state contain only the patients' age, illnesses, and the dates that Directives were carried out. Since patients' identities may not be revealed, state officials will have no access to the type of information that might trigger concern about abuse and no basis on which to examine the circumstances surrounding any particular case.

Also absent from the statute is any requirement for a psychiatric evaluation or other examination to rule out treatable depression as a cause of the request for euthanasia or assisted suicide. In fact, under Proposition 161, the attending physician is only permitted to obtain a consultation regarding a patient's competence if the patient consents. It is the very patients who will not consent--and the very physician who is unable or unwilling to acknowledge the need for such a consult--who present the most troubling concerns, especially as regards the elderly among whom metabolic and pharmacologic depression are not uncommon. Nor is there any guarantee that others who know the patient well will be able to warn the physician, since the statute contains no requirement that family members be notified of a patient's request. The model Directive does state that the declarant will "endeavor to inform [his or her] family," but it also asserts the choice of aid-in-dying is the patient's alone and places the responsibility to inform the family solely on the declarant, not on a physician who plans to act on a request for euthanasia.

Stable Wishes. A related concern is that any request for aid-in-dying should be stable and not a transient choice based perhaps on the person's immediate reaction to news that his or her illness is terminal. Here, too, the initiative contains insufficient protections. It provides that aid-in-dying requires an "enduring request" by a qualified patient, but it simply defines such a request as one that is "expressed on more than one occasion." Nothing is said about the occasions being separated by hours, much less days, and no waiting period is mandated between the time a terminal illness is diagnosed and the time when the request is expressed more than once.

If Proposition 161 is approved by California voters, people who might want active euthanasia could fill out Directives all over the country because the place where Directives are executed is no more limited by the statute than is the time. they become gravely ill, such persons could fly to an aid-in-dying clinic in California and--during the brief time two physicians need to review the medical records and confirm the "terminal condition"--the patients could twice reiterate the desire expressed in their Directive. That's all the statute requires.

Physician as Guardian. This scenario suggests another weakness in the supposed safeguards provided by Proposition 161: the lack of any assurance that the physicians performing aid-in-dying can or will protect patients against abuses. The statutory term "attending physician" may suggest a close, ongoing relationship, but such connection and personal knowledge is not required by the statute and, indeed, is not characteristic for most people in a mobile society like ours. Thus, "attending" connotes nothing more than the principal physician "selected by, or assigned to, the patient," in the words of the statute.

In a set of "Questions and Answers," the initiative's sponsors cite "the doctor and medical team" as the "principal check" on patients being subjected to pressure to seek aid-in-dying against their will. Yet given the skimpy knowledge that physicians will have of some patients' circumstances and family dynamics, this safeguard may prove weak or nonexistent. The attending physician is only enjoined to "take reasonable steps to determine that the Directive has been signed and witnessed," but "absent knowledge to the contrary" health-care providers "may presume the Directive complies" with the law. Nothing requires inquiries about any pressures toward euthanasia, which may be subtle or unconscious enough that a sick patient would not volunteer them. Moreover, if aid-in-dying becomes the province of a small subset of ideologically committed physicians, little will be left of the alleged safeguards, which depend upon physicians undertaking aid-in-dying as a last resort and bringing great caution and skepticism to each request.

Fallible Prognoses. Closely connected to the role of the physician is another of the central safeguards cited by proponents of Proposition 161: it does not create a regime of death-on-demand for everyone but is restricted to patients who are terminally ill. Yet even the initiative's backers recognize in their "Questions and Answers" that "physicians are fallible." Plainly, the concurrence of a second physician provides some but not a perfect means of remedying this problem: two heads are better than one, but both may be wrong. In ordinary circumstances, many medical errors are self-correcting; in time, the true diagnosis emerges and appropriate treatment is applied. When a patient who receives a dismal (albeit mistaken) diagnosis decides that a lethal injection seems more attractive than the six months of life remaining, the medical error becomes self-fulfilling instead.

In any event, fallibility in diagnosis is probably less of a risk than the mistakes that will occur in predicting that patients will live no longer than six months. Indeed, most physicians regard predictions of death more than a few days or weeks in the future as exercises in the grossest sort of guesswork. There are so many things that can happen to patients- particularly those whose pain and other symptoms are adequately addressed--that would render a six-month prognosis much too short. Thus, no real protection is provided by the requirement that a six-month prognosis be rendered "with reasonable medical judgment."

Expanded Practices. Not only are its present safeguards inadequate, but Proposition 161 can provide no protection against a greatly expanded practice of euthanasia. For example, there will be pressure to expand the statute to minors. In the reproductive context, courts have insisted that pregnant minors have a protected "privacy" or "liberty" right to choose; this right can be limited (requiring parental or judicial approval of the choice to abort, for example) but it cannot be eliminated solely because of the patient's age. So, too, advocates for minors with fatal illnesses will insist that they should be able to choose "aid-in-dying" without being subject to a parental veto. Likewise, the initiative's sponsors insist that it is "limited to those who have exhausted all treatment options" because the statute defines "terminal condition" as one that is incurable or irreversible. Yet under existing California law patients are free to accept or reject any treatment option, even when it might be life-saving. Thus, it can be expected that some patients diagnosed with treatable conditions (for example, cancers) that would be fatal within six months if not treated may insist on a quick death rather than accept treatments that could prolong their lives or even cure their disease.

Misused Language. Finally, a striking thing about Proposition 161 and its proponents' arguments is the way in which words are given meanings other than their common-sense, widely shared meanings. For example, [sections]2525.23 asserts that the Act does not "condone, authorize, or approve mercy killing." Yet it is undeniable that physician aid-in-dying is one species of mercy killing, the species also known as euthanasia, the providing of a good and painless death. The initiative also says aid-in-dying is not suicide although the common meaning of suicide is a person's death caused by the person's own actions with the intent to bring about his or her death. And most striking, the proponents' "Questions and Answers" insist that physician-assisted death is not killing because killing "means ending the life of someone who wants to live and does not want to die." Such Alice-in-Wonderland statements, such attempts to transform physician-assisted death into something it is not, are not trivial. If legalizing physician-assisted death is thought to be good social policy, it should be seen for what it really is, not what magically transformed language makes it seem to be.

Proponents and opponents of Proposition 161 can agree that not all terminally ill patients receive adequate pain control or have access to appropriate care, such as in a hospice program. We as a society often fail at caregiving. But the premise of Proposition 161-that the dignity of a dying person can only be maintained by legalizing physician-assisted death--is wrong. There is a real social problem of the inadequacy of our care of dying patients. We need to provide more education on pain management in medical schools and better funding of hospice care. And patients should not be subjected to unwanted treatment that prolongs their dying. We can make possible for patients the dignified death they desire and still avoid the arrival of a Frostian California.

California Proposition 161

Official Title and Summary Prepared by the Attorney General

PHYSICIAN-ASSISTED DEATH. TERMINAL CONDITION. INITIATIVE STATUTE.

Authorizes mentally competent adult to require in writing "aid in dying," as defined, in event terminal condition is diagnosed. Establishes rules for executing, witnessing, revoking request.

If properly requested, authorizes physicians to terminate life in "painless, humane, and dignified manner"; provides immunity from civil or criminal liability for participating health-care professionals, facilities.

Allows physicians, health-care professionals, privately owned hospitals to refuse assistance in dying if religiously, morally, ethically opposed. Provides requesting, receiving authorized assistance "not suicide."

Prohibits existence or non-existence of directive from affecting insurance policy terms, sale, renewal, cancellation, premiums.

Summary of Legislative Analyst's Estimate of Net State and Local Government Fiscal Impact:

Potential costs and savings to state and local government health programs. Net impact is unknown, but probably not significant.

This essay is part of a special report on California's Proposition 161, published with essays by Carlos F. Gomez, Leon R. Kass, and Daniel Callahan, essays which first appeared in a Commonweal Special Supplement (August 8, 1991). That supplement addressed similar euthanasia legislation in Washington State. Ordering information for this revised special report on California will found on page 19.

ALEXANDER MORGAN CAPRON holds the Henry W. Bruce University Chair in Law and Medicine at the University of Southern California.

VICKI MICHEL is associate director of the University of Southern California's Pacific Center for Health Policy and Ethics.