Herbert Hendin, Kathleen Foley, Margot White. Issues in Law & Medicine. Volume 14, Issue 3. Winter 1998.
In November 1997, Oregon became the only state to legalize physician-assisted suicide. Five months later, a task force of health care professionals organized by the Center for Ethics of the Oregon Health Sciences University (“OHSU”) issued a guidebook for health care providers “designed to be a comprehensive reference book on all aspects of putting the Act into practice.” In March 1998, the media reported news of what were said to be the first cases of legally sanctioned physician-assisted suicide in the state. The first case reported—for which there are some limited details—provides a clinical focus to view the new law and the guidebook’s recommendations.
The First Case
Our knowledge of the case is from newspaper reports which conveyed information provided by the staff of Compassion in Dying, a Portland based advocacy group that supported passage of the Oregon legislation. Additional information about the patient comes from anonymous interviews given to selected members of the media by the physician who prescribed the medication. On the day after the patient’s death, Compassion in Dying held a news conference in which the patient (referred to here as Mrs. A) was described as being in her mid-80s with metastatic breast cancer, and in a hospice program. The conference featured excerpts from an edited audiotape in which Mrs. A said of her impending death “I’m looking forward to it…. I will be relieved of all the stress I have.” The tape was said to have been made two days before her assisted suicide.
Mrs. A’s own physician had not been willing to assist in her suicide for reasons that were not specified. A second physician also refused on the grounds that Mrs. A was depressed. Mrs. A’s husband called Compassion in Dying and was referred to a doctor willing to participate.
Peter Goodwin, medical director of Compassion in Dying, said that he had two lengthy telephone conversations with Mrs. A at the time of the referral and also spoke by phone to her son and daughter. He described Mrs. A as “rational, determined and steadfast” and called “questionable” the opinion of the physician who described her as having a depression that was affecting her desire to die. Goodwin felt Mrs. A was “frustrated and crying because she was feeling powerless.” He said she had been doing aerobic exercises up until two weeks before she contacted him, but told him she could not do them anymore. She was also unable to continue to garden which had been one of her favorite activities. He stated she was not bedridden, was not in great pain, and still looked after her own house. Goodwin said the “quality of her life was just disappearing” and he thought it prudent to act quickly before Mrs. A lost the capacity to make decisions for herself.” He said she was “going downhill rapidly…. She could have had a stroke tomorrow and lost her opportunity to die in the way that she wanted.”
Goodwin referred Mrs. A to a physician who would assist in her suicide. That physician referred her to a specialist (of an unspecified specialty) and a psychiatrist, both of whom determined she met the qualifications for physician-assisted suicide under the Oregon law. Although the psychiatrist met Mrs. A only once, Goodwin indicated that the visit was lengthy.
The physician who prescribed the medication gave an anonymous interview to Oregon Public Broadcasting in which he described his participation as an “extremely moving experience for me.” In an interview with a reporter from The Oregonian, he stated that he was struck by Mrs. A’s tenacity and determination. “It was like talking to a locomotive. It was like talking to Superman when he’s going after a train.”
That physician, who had met Mrs. A two and one-half weeks before she died, described her as having been in greater physical distress than described by Dr. Goodwin. The physician said that she “had battled breast cancer for more than 20 years, and that the cancer had spread to her lungs, causing pain and making breathing difficult.” He said that the problem for him “was not fulfilling his responsibilities to the patient under the law but rather finding a pharmacist” to dispense the necessary drugs. Eventually he found a pharmacist. The physician was with Mrs. A and members of her family when she died. The physician followed a protocol devised by Compassion in Dying which included an anti-nausea medication which Mrs. A had taken before he arrived. She then took a mixture of barbiturates (nine grams) and syrup followed by a glass of brandy. She is said to have died within thirty minutes.
The promotional quality of the news conference featuring Mrs. A’s taped remarks offended some, including the patient’s family members who had not anticipated that these remarks and the story would be made public so soon after Mrs. A’s death. Following the announcement of what was thought to be the first legal assisted suicide in Oregon, it was reported and confirmed that since the Oregon law had gone into effect the Hemlock Society of Oregon had helped arrange an even earlier assisted suicide for a cancer patient. The date of that assisted suicide is unknown and at the family’s request no details were made available.
The case of Mrs. A is presented by Compassion in Dying as a model of how well the Oregon law works. Yet even with the limited details supplied by Compassion in Dying and the prescribing physician there are disturbing questions raised by the case. The physicians who evaluated Mrs. A offered two contradictory sets of opinions about the appropriateness of her decision. As the decision-making process progressed, there was no mechanism provided by law to resolve the disagreement between the physicians, such as an ethics committee to hear the facts of the case and make recommendations. Instead, the opinions of the two doctors who did not support the patient’s decision—one of whom knew her for some time and the other who considered her depressed were essentially ignored. The patient’s husband simply contacted Compassion in Dying to find someone who would agree to assist in the suicide of Mrs. A. The medical director of Compassion in Dying, Dr. Goodwin, concluded from a phone conversation with Mrs. A that she was not depressed and that her decision was appropriate. He referred her to a physician who would be willing to help her. That doctor agreed to assist in her suicide and the patient was then referred to a second physician and a psychiatrist, both of whom supported Dr. Goodwin’s opinion. As Barbara Coombs Lee, the director of Compassion in Dying stated, “If I get rebuffed by one doctor, I can go to another.”
Patients, of course, have the right to obtain second opinions and to seek out physicians who will provide the therapies they choose. In this case, however, the medical opinions should be voiced to facilitate an understanding of the complicated factors involved, which are apparently convincing to some physicians and dismissed by others. Were either Mrs. A’s physician or the second physician who diagnosed her as depressed consulted by the physician who eventually assisted in the suicide or did he simply rely on a conversation that Dr. Goodwin had with that physician?
No information is provided to indicate that the physicians recommended by Compassion in Dying were trying to find any feasible alternatives to suicide. In the taped interview with Mrs. A, her physician told her that it is important she understand that there are other choices she could make. He then listed these for her and in three sentences covered hospice support, chemotherapy, and hormonal therapy.
Doctor: There is, of course, all sorts of hospice support that is available to you. There is, of course, chemotherapy that is available that may or may not have any effect, not in curing your cancer, but perhaps in lengthening your life to some extent. And there is also available a hormone which you
were offered before by the oncologist—tamoxifen—which is not really chemotherapy but would have some possibility of slowing or stopping the course of the diseases for some period of time.
Patient: Yes, I don’t want to take that.
Doctor: All right, OK, that’s pretty much what you need to understand.
The physician’s awareness that she has seen other physicians and is in a hospice program is not justification for such a cursory approach. During the taped remarks, Mrs. A expressed concern about being artificially fed, a concern that suggests greater vulnerability and uncertainty about her course of action than the physician perceived. He did not assure her that this need not happen in any case. He ignored the remark and instead asked a question designed to elicit a response about her desire to die. Nor did Mrs. A’s family raise any questions as to whether anything could be done to cause her to be less eager to end her life. Certainly the reasons given by Dr. Goodwin for haste in effectuating her death are not persuasive.
Mrs. A is not the first physician-assisted suicide case presented by Compassion in Dying to the news media. The organization presented another “model” case that took place before the Oregon law was passed. Before the death, they invited a New York Times reporter to cover the story. The reporter’s article titled There Is No Such Thing as a Simple Suicide stated that after her initial request the patient had become hesitant but felt pressured not to change her mind by her mother, her doctor, a friend, and a Compassion in Dying representative. At the end she complains that “everyone is ganging up on me, pressuring me.”
Basic Features of the Law
Many of the problems raised by the case of Mrs. A are inherent in the Oregon law. Under this law when a patient requests assisted suicide the physician must determine that the patient is: suffering from a disease that the physician believes will end his or her life within six months; that the decision to commit suicide is voluntarily made; that the patient is capable of making the decision; that the patient is making the decision after being informed of the diagnosis, prognosis, and feasible alternatives; and that the decision is sustained over a fifteen day period. A consulting physician must confirm the physician’s opinion. If either of the physicians believes that the patient is suffering from a mental disorder or a depression that is impairing judgment, a referral for counseling is to be made to a licensed psychiatrist or psychologist. The physician may choose whether or not to be present when the patient takes the lethal dose of medication. If the physician follows the law’s provisions and acts in “good faith,” the physician is immune from criminal or civil liability or professional disciplinary action.
The Oregon law is similar to law in the Netherlands, where assisted suicide has been practiced with legal sanction for several decades. In both Oregon and the Netherlands, there are criminal statutes prohibiting assisted suicide and there are statutes permitting physicians to assist in a suicide under certain defined conditions. There is one important conceptual difference however. Intolerable and unrelievable suffering—a requirement for assisted suicide in the Netherlands—is not a requirement of the Oregon law.
Palliative Care
While the subjectivity of determining unbearable suffering presents problems, not including suffering as a criterion means that simply having a diagnosis of terminal illness can by itself be considered sufficient reason in Oregon to accelerate death. Because suffering is not a criterion, physicians are not encouraged to inquire into the source of the desperation that usually underlies requests for assistance in suicide. Such an inquiry may promote patients and physicians to have the types of discussion that often leads to relief for patients and makes assisted suicide seem unnecessary. Physicians are neither asked nor required by the Oregon law to make such an inquiry. Mrs. A’s prescribing physician did not appear to inquire into the nature of her suffering; his perception of her as a “locomotive” that perhaps only Superman could slow down would have made such an inquiry difficult for him. Certainly such a discussion with her would have included consideration of her fears of being artificially fed and led to an assurance that she did not need to choose assisted suicide in order to avoid artificial feeding. The fact that the OHSU task force—whose guidebook has no legal status—felt it necessary to recommend that physicians ask patients why they are requesting assisted suicide suggests this particular weakness of the law, suggests how unprepared Oregon physicians are to deal with patient fears and suffering, and to present possible alternatives to assisted suicide, and suggests the lack of protection provided by the law for Oregon patients.
Under the Oregon law when a terminally ill patient makes a request for assisted suicide, physicians are required to point out that palliative care and hospice care are “feasible alternatives.” They are not required, however, to be knowledgeable about how to relieve either physical or emotional suffering in terminally ill patients. Without such knowledge, and without inquiry into the sources of the patient’s desperation, the physician cannot present feasible alternatives. In presenting Mrs. A, without discussion, a perfunctory list of other choices she could make in a few sentences. Mrs. A’s physician has fulfilled a legal requirement rather than presented actual medical alternatives.
Even if physicians were inclined to initiate the necessary dialogue with patients requesting assisted suicide and were encouraged by Oregon law to do so, the published evidence suggests that the majority of physicians are not adequately trained to deal with the many factors and symptoms commonly associated with patients’ requests for assisted suicide. According to the American Medical Association’s report on medical education only a handful of medical schools in the United States require a course in the care of dying patients. Only a quarter of residency programs offer this type of course. Only 17% of over a thousand accredited residency programs surveyed offer a hospice rotation, and only half of those programs require it. In a survey conducted by the American Board of Internal Medicine only 32% of 1400 residents surveyed felt they had received adequate training in talking to patients who request assistance in dying or a hastened death. There are no requirements in Oregon or any state that physicians must take courses in pain management and palliative care, or that physicians must learn to evaluate suicidal patients should they wish to practice assisted suicide, nor are there certifying exams for physicians who believe they are already qualified.
It seems necessary that physicians lacking such training should be required to refer any patient requesting assisted suicide for consultation with a physician knowledgeable about palliative care. There is, however, no such requirement in the Oregon law. The OHSU task force attempts to compensate for the law’s lack of a training requirement by suggesting that the legally mandated second opinion should come from someone who has some knowledge of the patient’s particular illness and some knowledge of how to palliate it.
Consulting Physician
Although the Oregon law does require a second physician to evaluate the patient to confirm the diagnosis, prognosis, and voluntariness of the choice, no provision is made for the independent selection of this consulting physician. The Dutch experience suggests that such consultants are likely to be colleagues of the first physician and their evaluations are likely to be pro forma. The Royal Dutch Medical Association has now recommended that such consultants be independently chosen, a recommendation echoed in the Oregon guidebook. Unless the selection is truly independent, the consultant of the attending physician is likely to be an assisted suicide proponent and practitioner. In the case of Mrs. A, the fact that we do not know who the consultant is, how the consultant was selected, or what the basis was for the consultant’s findings adds to concern about the independence of his or her opinion.
Psychiatric Evaluation
Although one well-known proposed model statute mandates a psychiatric evaluation of all patients requesting assisted suicide, and the OHSU task force recommends that such an evaluation be done in all cases, the Oregon law does not require it. Under the law, only if the attending or consulting physician believes that the “patient may be suffering from a psychiatric or psychological disorder, or depression causing impaired judgment,” must the physician refer the patient to a licensed psychiatrist or psychologist for counseling. Depression per se is not considered a sufficient reason for such a referral. The caveat of impaired judgment is strange since depression usually causes patients to see problems in black and white terms, overlooking solutions and alternative possibilities; such impairment of judgment is a basic characteristic of the disorder. In any case, studies have shown that physicians are not reliably able to diagnose depression let alone to determine whether the depression is impairing a patient’s judgment.
The diagnosis of depression is particularly important since like other suicidal individuals, patients who desire an early death during a serious or terminal illness are usually suffering from a treatable depressive condition. Although pain and other factors, such as a lack of family support, may contribute to a patient’s wish for death, depression is the most important factor. In fact, researchers have found depression to be the only factor that significantly predicts the wish for death. Two-thirds of patients requesting assisted suicide are depressed—about the same percentage as those who attempt or commit suicide unaided. Hopelessness, the aspect of depression that helps distinguish depressed patients who are suicidal from those who are not, has been shown to play a similar role in predicting suicidal ideation in patients who are terminally ill.
Not all of the factors justifying a psychiatric consultation center around a patient’s current depression. Most patients who request assisted suicide are doing so not because of current pain and suffering but out of fear of what will happen to them—such as Mrs. A’s fear of artificial feeding. Such fears often derive from the patient’s past experiences with the death of close friends and relatives, therefore, a history of these experiences should be part of any physician’s evaluation of requests for assisted suicide. That evaluation must reflect an awareness of risk factors for suicide such as alcoholism, a past history of depression, and, of course, any prior suicide attempts.
Most suicide attempts also reflect a person’s ambivalence about dying, and patients requesting assisted suicide show an equal ambivalence. Physicians inexperienced in dealing with suicidal patients tend to take requests to die literally and concretely, failing to hear this ambivalence.
The psychiatric consultation as envisioned by the Oregon law is not intended to deal with these considerations but the more limited issue of a patient’s capacity to make the decision for assisted suicide. But there are no criteria and no agreed upon standards for identifying the impairment that may make a patient incapable of such a decision. In addition, there is no suggestion in the law or the guidebook that a determination of impaired judgment in a patient requesting assistance in suicide is an indication of a need for treatment, nor any suggestion of an obligation to offer and discuss such treatment. The psychiatrist’s role as “gatekeeper” under the Oregon law is narrowly conceived, ignoring his or her ability to explore and relieve the anxiety and ambivalence as well as the depression that underlie most requests for assisted suicide. Indeed, under the Oregon law such exploration seems irrelevant.
Moreover, when Oregon psychiatrists were surveyed, only 6% felt very confident that, absent a long term relationship with a patient, they could satisfactorily determine in a single visit whether a patient was competent to commit suicide. Dr. Peter Goodwin, of Compassion in Dying, was probably aware of this fact when he indicated that while the psychiatrist saw Mrs. A only once, the visit was “lengthy.” But, even a lengthy visit is no substitute for a second interview with some time interval in between. The same Oregon survey revealed that the majority of those willing to do an evaluation of a patient’s competence for assisted suicide favor the practice. If patients were found not to have a mental condition impairing judgment, the majority of those opposed to assisted suicide were likely to work with the patient to prevent the suicide, while those who supported assisted suicide were likely to support the patient in obtaining a lethal prescription. The authors of that study conclude that because the majority of psychiatrists doing such evaluations will be in favor of assisted suicide “a bias may be introduced into the competency evaluation. On balance, the psychiatrists’ conclusions may reflect personal values and beliefs more than psychiatric expertise.” When advocacy groups, like Compassion in Dying, are shepherding the cases and the referrals, the likelihood of such bias is even greater.
The physicians to whom Mrs. A was referred by Compassion in Dying evidently did not consider Mrs. A to have been depressed or to have impaired judgment, therefore, the psychiatric referral appears to have been made to counter the opinion of one of the original doctors and/or because Compassion in Dying wished to publicize this as a “model” case. Since the Oregon law does not require such consultation, only a small percentage of patients are apt to be referred for independent psychiatric evaluation. In the Netherlands, where a psychiatric evaluation is also not required, only 3% of cases are so referred.
An Informed Decision
Without a proper psychiatric evaluation, it is not possible to ascertain if a patient’s judgment is impaired, and therefore rendering him or her “incapable” of an “informed decision” as required by Oregon law. If no consultation occurs with someone knowledgeable enough about the patient’s symptoms or disease to indicate how the patient’s distress might be alleviated, then, even if the patient is capable, an informed decision is not possible.
Even if the patient is capable of making an informed decision at the time a prescription for lethal medication is written, a considerable time may elapse and conditions may change before the medication is actually taken. What if a patient who has been given medication but not yet taken it becomes agitated or delirious? Should the medicine be taken away? Unless physicians see patients shortly before they take the medication—a step not required under the Oregon law—there is no assurance that the patient is capable, informed, or uncoerced at the time of the suicide.
Voluntary Request
The Oregon law strictly stipulates that a patient’s request for assisted suicide must be made voluntarily. Anyone who “coerces or exerts undue influence on a patient[‘s]” decision is guilty of a felony. “Voluntariness” is to be assured by having the patient submit a written request for assisted suicide signed by two witnesses one of whom must not be a relative, an heir, or the owner or operator of a health care facility where the patient is receiving treatment or is in residence. Neither of the witnesses shall be the patient’s attending physician.
The witnesses must attest that the “patient is capable, acting voluntarily, and is not being coerced to sign the request.” On what basis is such an assessment made and using what criteria? The Oregon law does not require that the witnesses actually know the patient—proof of the patient’s identity is sufficient. The law would permit an heir to be one of the witnesses and a friend of the heir to be another. In proposed statutes in other states, neither of the witnesses can be a beneficiary.
Oregon patients are also required to make two oral requests for assisted suicide with an interval of fifteen days in between. Although some proponents of assisted suicide object to the delay, the time interval, if followed, is a safeguard of some value since the majority of patients requesting assisted suicide have a less strong desire to die when seen two weeks later. The manner in which this time requirement is to be monitored has not been addressed, since the only evidence of the oral request necessary under the law, is the physician’s own notation in the patient’s medical records. In addition, the law does not stipulate that the second request be made in person; an affirmation by phone of the original request and a mailed prescription offer much less protection.
There is nothing in the Oregon law, nor in the Dutch law, to prohibit a physician from suggesting assisted suicide to a patient. Fifty percent of Dutch physicians say they feel free to do so. Although the OHSU task force, recognizing that such suggestions compromise voluntariness, recommended physicians not suggest assisted suicide, proponents of assisted suicide who believe it is a legitimate medical procedure and reasonable option could well feel entitled, if not obliged, to make such a suggestion. Indeed, if physician-assisted suicide is accepted as legitimate medical practice as the Oregon law envisions, families could conceivably sue physicians for having caused patients to suffer by not suggesting it.
Family Notification
We know that in Mrs. A’s case, and in the case announced and facilitated by the Hemlock Society, at least some family members were informed of and participated in the assisted suicide. Under the Oregon law the physician is required to suggest that patients inform their families of their request for assisted suicide, but the patient is not required to do so and is permitted to refuse to inform them. The physician is explicitly instructed in the law not to deny the request on the basis of such a refusal. Even if the patient complies, the physician is not required by law to ask to see the patient’s family. Yet how can any physician be sure there is no coercion unless the physician has met the family and seen the interaction among them and the patient? It is unknown whether any of the physicians involved observed the interaction of Mrs. A with other family members or evaluated their motives for favoring assisted suicide.
Not informing family members can prevent a caring family from expressing their affection in ways that might alter the patient’s decision. It also opens the family up to the devastating grief and guilt evident in survivors of suicide. Much of that guilt comes from feeling there were things they could or should have done to encourage their suicidal family member to want to live. Feeling cut off from what a loved one was going through prior to the act is a major contributor to such anguish. Advocates of assisted suicide argue that legalization, by permitting the family to be part of the process, ameliorates such suffering. Not informing the family makes this impossible. Does a physician have any responsibility for the consequences?
What if a young husband contemplating assisted suicide has made no provisions for his family? One can envision a number of similar situations where a failure by the physician to meet the family causes them to be unprepared for painful consequences. The provision of the Oregon law that states that a patient who declines to inform his family “shall not have his or her request declined for that reason” is too sweeping in scope.
Terminal Illness
The Oregon law specifies that to be eligible for assisted suicide a patient must have six months or less to live. Although such predictions vary in accuracy depending on the disease involved—high accuracy in cancer, low in cardiovascular disease—when surveyed, over fifty percent of Oregon physicians indicated they were not confident they could make such a prediction. Will Oregon patients like Mrs. A be told of the uncertainty of these predictions? The criterion of six months becomes less clear when the patient exercises his or her right to refuse treatment likely to succeed in prolonging life. Whether the six month period is to be estimated with or without such treatment is an issue unaddressed by the law. In any case, the physician is protected from any determination he or she makes that the patient is terminally ill, because physicians are immune from suit when they “act in good faith” under the Oregon law.
The Prescription
Doctors are required under the Oregon law to inform patients about the likely consequences of taking the prescribed medication, usually barbiturates. But there is no base of information available to physicians to enable them to provide reliable information. No one has established accurate individual lethal doses of drugs for medically ill patients or established the side effects of taking the projected doses. There is empirical evidence that people who attempt suicide and take many times the estimated lethal dose of a medication, often linger in coma for days—some dying and others not, and the difference in outcome is not predictable. The Dutch have found that about twenty percent of patients taking what is considered a lethal dose of barbiturates do not die after five hours and physicians usually intervene with lethal injections.
Oregon physicians are prescribing barbiturates without appropriate guidelines, and each patient is essentially a participant in an experiment performed by the physician. In a number of reported cases in this country, after swallowing presumed lethal doses of barbiturates patients did not die and families intervened with pillows or plastic bags. The Oregon law fails to describe what physicians should do if their patient does not die from the prescribed dose.
There is no provision in the Oregon law requiring the doctor to be notified about what happens to the patient for whom he wrote a lethal prescription. Without such information, elemental questions such as how effective the medication is or even what percentage of patients given the prescription actually use it, are unanswered. The prescribing physician was present when Mrs. A died; with the Hemlock Society case no physician was present during the suicide. A family member reported in the latter case that the patient died within five minutes after taking the lethal mixture, a statement, that if accurate, suggests that something other than barbiturates was used. Although the Oregon task force suggested that physicians be notified when the patient dies as a result of taking the prescribed medication, there is no provision in the law which requires the physician to make an effort to obtain this information. If physicians are experimenting on patients, then patients should be informed and data collected in order to learn from the experience.
What happens when the family or other caregivers who have not been informed that a patient has been given a lethal prescription find the patient in a coma? Although the Oregon task force recommends that patients have DNR orders, the Oregon law does not require it. Without knowledge of the background the uninformed family or caregiver may strongly feel that the patient should be resuscitated and may try to do so.
Reporting
The Oregon law gives the Oregon Health Division (“OHD”) authority to monitor compliance with the provisions of the law. The OHD is authorized to determine what information concerning assisted suicide physicians should be required to report. A set of OHD Permanent Administrative Rules, effective April 24, 1998, requires the physician who writes the prescription for suicide drugs to send OHD a copy of the patient’s written request for the medication. The prescribing physician is also supposed to complete and send a form developed by OHD called “Attending Physicians Compliance Form.” The physician may choose, however, whether to fill out a two-page version or an abbreviated half-page version which states that OHD can examine relevant parts of the patient’s record. By filling out the abbreviated form, the physician shifts to the OHD the burden of obtaining information, which OHD is not required to do by law or by its own rules. OHD’s legal mandate is limited to creating rules to facilitate the collection of information.
Particularly troublesome is the meager amount of information the physician is asked to provide OHD even on the longer compliance form. The long form is basically a list of requirements that the physician must check off as having been met—determination that the patient is capable, is acting voluntarily, etc. Apart from one line provided for both diagnosis and prognosis, the form does not ask for any medical information or even the patient’s reasons for making the request for assisted suicide. The form does not inquire on what basis the physician made the medical diagnosis, such as a review of x-rays, written material, pathology reports, or other information. Nor is the physician asked to report on what basis he made the prognosis—What tables has he used? What experts has he requested information from? The absence of such information is particularly disturbing since eligibility for suicide medication in Oregon hinges on diagnosis and prognosis. The OHD form does not make it possible to know what transpired in any particular case. In the case of Mrs. A, the limited and inadequate information given to us by the prescribing physician and Compassion in Dying is more information than the physician is asked to supply the OHD. Since the Oregon law makes no provision for eliciting information from physicians who examine patients and do not support their requests for assisted suicide, OHD will not have the benefit of the findings of Mrs. A’s long-term physician or the first consultant who saw her.
Of course, the short form provides even less information—only the patient’s name, date of birth, diagnosis, and prognosis, and the physician’s name and address. Given the intense fear of litigation that has been said to motivate many physicians to support legalization, and also the fear of exposure on the part of many participating physicians, it is likely that the majority of physicians will submit the short form.
There is no enforcement mechanism in the law should physicians choose not to comply with OHD’s reporting rules or choose not to report assisted suicide cases at all. The OHSU task force notes without comment that the OHD has no enforcement authority and that the law is “silent on what the Division should do when non-compliance is encountered.” There is no requirement on the forms or in the law for the physician to report on the patient’s social or economic circumstances. Yet these circumstances are often critical in influencing the patient’s view of “feasible alternatives” and can make the exercise of a voluntary choice impossible.
The reporting required by OHD of the psychiatric consultant is also inadequate. Such consultants are asked only to confirm that the patient’s judgment is not impaired. The form is preprinted to that effect. OHD makes no requirement to send a form if the consultant concludes that the patient’s wish for suicide is a symptom of impaired judgment. Therefore, the percentage of patients seen in consultation by Oregon psychiatrists deemed too impaired to make a decision for assisted suicide, will remain unknown. Nor will there be any background data indicating whether a patient whose judgment was likely impaired was nonetheless approved for suicide. It is precisely these cases which need review and oversight, and for which laws aimed at preventing abuse should be effective.
The manner in which the death certificate is to be completed in assisted suicide cases is also left optional. The Oregon task force recommends that physicians note as the immediate cause of death, “drug self-administered, legally prescribed.” That description seems deliberately vague, blurring for all concerned the critical distinctions between whether one is dealing with an accidental overdose, unintended death as a complication of pain medication, or the intended death of assisted suicide.
Even if the Oregon law were not so permissive concerning reporting, non-reporting would be a serious problem. The Dutch have documented that the majority of cases of assisted suicide and euthanasia are not reported. Most non-reporting involves cases where physicians failed to follow established guidelines for voluntariness or consultation. By continually focusing on this problem the Dutch have been able to reduce the percentage of unreported cases from 82% to 59%. Although this means that most cases are still not reported, without such a focus the situation would be worse. In Oregon, the issue of ascertaining nonreporting has not been addressed.
The purpose of a legal mandate to report all cases would be, of course, to provide a means to sanction physicians who failed to do so, as well as to provide the essential statistics on which to do even a minimal research
Protecting Physicians not Patients
A concern with physician protection, rather than patient protection, pervades the Oregon law. Under the law, physicians are exempt from the ordinary standards of care, skill, and diligence required of Oregon physicians in other circumstances (e.g., a physician’s conduct in withdrawing life support). Instead, the physician is immunized from civil and criminal liability for actions taken in “good faith” in assisting a suicide irrespective of community standards in other matters and even when the physician acts negligently.
The choice to apply a good faith standard rather than the higher and customary negligence standard is a curious one. Good faith is most often used in the context of a self-defense argument, for example, by individuals who believe they needed to use extreme force to defend themselves. The defense does not require the person’s belief to have been reasonable. A person could act negligently or even recklessly, but as long as that person subjectively believed those actions were appropriate, the defense may prevail. It is an entirely subjective standard.
A “negligence” standard, which is customary in professional practices, provides objective guidelines for a particular procedure or the established and objective standards for good practice. If the intent of the assisted suicide law is to protect physician’s from accountability for violating the statute’s provisions, the good faith standard is ideal. If the intent of the law is to provide protection for patients, the negligence standard would be appropriate.
Secrecy
In this context it is not surprising that OHD has focused more on doctor/patient confidentiality, than on monitoring compliance or abuse. Internal memoranda from OHD to its county vital records offices instructed all employees that they should “neither confirm nor deny if a (physician-assisted) death has occurred in your county.” To underscore “how seriously this matter is being taken” by the Health Division, the memo warned that “any staff within the Center for Health Statistics that reveals any information they are not authorized to release will immediately be terminated.” Another internal memorandum from the OHD Center for Health Statistics to funeral homes promises “future plans” to limit all requested copies of death certificates to a new, abbreviated form which eliminates information about the cause and manner of death and underlying disease conditions. These plans, according to the memo, “include a computer generated death certificate and new technology which will allow us to `mask’ our microfilm so we can block out the cause [of death] portion.”
The OHD has developed measures unique to physician assisted suicide to protect the privacy of patients and their families. But these measures appear to be extraordinarily secretive. They also limit the potential for thorough research into the dimensions and context of this practice as it unfolds.
The Oregon law specifically states that although the Health Division will issue a report each year based on a selected sample of cases, “[t]he information collected shall not be a public record and may not be made available for inspection by the public.” The same provision applies to the death certificates filed in these cases. There is no provision for an independent evaluator or researcher to study whatever data are available.
OHD’s report on the first ten cases in which physicians reported they had given lethal prescriptions to patients under the Oregon Law was not informative. The forms filed by physicians in these cases indicated that they had followed the requirements of the Oregon law regarding such matters as consultation and a waiting period. One patient had heart disease, the rest had cancer. Their average age was seventy-one. Information concerning how the diagnosis was established, the prognosis determined, or what other alternatives were considered was not provided. Nor were we told if any of the patients was referred for psychiatric consultation. Eight of the ten patients used the prescribed medication to end their lives and two died without having taken the medication. Interestingly, the physician in those two cases revealed that pain in both cases had been well controlled. Although a spokesperson for the OHD indicated that there had been no complications in any of the deaths, in one case it took the patient seven hours to die.
Since physicians are not asked to reveal significant medical information about their cases of assisted suicide, the disappointing OHD report is not surprising. But several of the physicians involved were interviewed by members of OHD after the death and OHD intends to release a summary of those interviews. Only if the interviews were conducted by physicians knowledgeable about palliative care and willing to ask probing questions will the information be of value. Otherwise, the interviews are apt to replicate the Dutch experience in which one group of physicians collegially accepts the decisions of another group without questioning behavior that outside observers have considered medically inappropriate.
Since OHD has restricted access to whatever information is available, Oregonians will know mainly what advocacy groups involved in the cases or participating physicians choose to reveal. The anonymity and secrecy about physician practice of assisted suicide goes counter to all standards of medicine which depends on openness about facts, research data, and records to assess the appropriateness of treatment. If physician assisted suicide is to be part of the medical treatment for terminal illness, then the application of existing patient/doctor confidentiality rules should be sufficient to protect physicians in this setting. Restricting access to information about the indications for assisted suicide, patient data, radiologic documentation, and specific drug therapy, limits the opportunity to establish a standard of care, and provides excessive protection to the physician while, in the name of confidentiality, leaves the patient vulnerable. The vulnerability of the patient becomes of real concern when we begin to focus on any potential conflict of interest or bias of the treating physician. Patient privacy is and should be protected by law, but nothing in law, ethics or medicine requires or suggests that the identity of doctors participating in any particular medical procedure should be concealed.
There is no evidence that physicians who disclose that they have assisted in a suicide have been harassed like those known to have performed abortions. In Oregon two physicians who have publicly revealed they wrote prescriptions for assisted suicide since the law went into effect have not reported being harassed.
We are told by Compassion in Dying that the family gave permission for the release of the tape recordings. Did the patient also consent to this release? If there is adequate consent why release only excerpts of an edited version of the tapes? Did the doctors discussing the case with the media have the patient’s or the family’s consent for them to do so? If so, why should doctors assisting in suicide give interviews to media representatives and not be questioned by their peers? Particularly when a procedure is new and untried, physicians customarily present what they are doing to colleagues so they can learn from the feedback.
Discussion
Under the Oregon law, physicians have been given authority and are not in a position to exercise it responsibly. They are expected to inform patients that alternatives are possible, without being required to be knowledgeable enough to present the alternatives in a meaningful way or to consult someone who has the appropriate knowledge. Physicians are expected to evaluate patient decision-making capacity and judgment without a requirement for psychiatric expertise or consultation. Physicians are expected to make decisions about voluntariness without having to meet and view those close to the patient who may be exerting a variety of pressures, from subtle to coercive. Physicians are expected to do all of this without necessarily knowing the patient for more than fifteen days. Since physicians cannot be held responsible for wrongful deaths if they act in good faith, substandard medical practice is encouraged, physicians are protected from the consequences, and patients are left unprotected while believing they have acquired a new right.
The OHSU guidebook is to a large degree a measure of the Oregon law’s deficiencies. Some of these deficiencies cannot be overcome by amending the statute or changing the administrative rules since effective monitoring would require an intrusion into the physician-patient relationship to a degree that most patients and physicians would not want or accept.
The guidebook’s recommendations are meant to reassure the public by its recognition of many of the problems inherent in the law, while suggesting a more thorough evaluation of patients and a higher standard of practice generally than does the statute itself. Many of these suggestions, however, were part of the public discussion prior to the law’s passage, and were presumably not included in the law because those who supported the law opposed the suggestions. It is unlikely that physicians will now follow guidelines they opposed and which the law does not require or encourage them to follow.
In the absence of other protections, careful reporting and monitoring of the practice would be the last remaining safeguard. In this context the fact that significant medical information will not be collected—an issue not addressed by the OHSU task force—is especially troubling. The voluntary nature of the reporting of cases, and the secrecy with which OHD has surrounded assisted suicide documentation is also troubling. Proponents of legalizing physician-assisted suicide had argued effectively prior to passage of the Oregon law that legalization would make the practice more open, and therefore subject to scrutiny and regulation, practices that were being performed covertly. Oregon was supposed to be a laboratory from which to examine how physician-assisted suicide works in actual practice. As it now stands, such an examination is not going to occur.
The public may, in fact, learn less rather than more about future cases. A prominent member of the OHSU task force told The Oregonian that too much information had been revealed about the first cases. “They [the public] wanted to know [the law] worked in general and other than that they were almost embarrassed to read about details.” She went on to say that would seldom happen in the future. Subsequent cases of physician assisted suicide in Oregon seemed to confirm her prediction. The only information available has been that procedures required by the Oregon law had been followed and that the patients died without complication. In one case, a physician who assisted in a suicide and did reveal his identity, told The Oregonian he had several more patients within the fifteen-day waiting period, but refused to answer the reporter’s question as to whether the patient he had assisted had received a psychiatric evaluation.
The Dutch experience should lead us to reject the claim of Oregon’s proponents of assisted suicide that because relatively few cases have been reported, the system is working well. In the Netherlands, the number of cases of assisted suicide and euthanasia did not increase significantly until time gave greater medical and social sanction to the practice. Moreover, the majority of cases in the Netherlands are still not reported. and there is every reason to believe that will be true in Oregon as well. It is euthanasia, however, that puts greater control in the hands of the physicians, and that greatly increases the number of cases. It remains to be seen whether proponents will be successful in persuading Oregonians to take this next step.
Conclusion
Proponents of assisted suicide in Oregon have expressed the hope that other states will follow their example, and have indicated their intention of trying to encourage legalization in other states. So far most states have not seemed inclined to do so. Instead, five states defeated Oregon style laws to prohibit assisted suicide or are considering new laws to prohibit the practice.
The Oregon law still faces many types of legal challenge. Before the Death with Dignity Act went into effect, the courts ruled that those in opposition to the law did not have standing to challenge the law. This has now changed and plaintiffs with standing will undoubtedly come forward.
The United States Attorney General has ruled that the Drug Enforcement Administration (“DEA”) does not have the authority to revoke physician’s licenses to prescribe controlled substances when they use the drugs for what the DEA had considered the nonmedically approved purpose of assisted suicide. The prior threat of DEA sanction was said to have had an inhibiting effect on the freedom of Oregon physicians to practice assisted suicide. If that is true, we should expect to see an increase in the number of such cases. Congress, however, is now considering bills to amend the Controlled Substances Act to prohibit the use of medications to assist in suicide or for euthanasia.
Each of the authors of this article has written independently on the subject of assisted suicide. We were opposed to passage of the Oregon law partly because of concerns that physicians were not knowledgeable about how to relieve physical and emotional suffering in terminally ill patients and partly because we did not believe that it would be possible to regulate the practice. The rules promulgated for monitoring the Oregon law justify our concerns over regulation. The first case, presented as a model of how the law should work, seems rather to illustrate the reasons for our clinical concerns.
Whether for or against initial passage of the law, Oregonians would be wise not to wait and see if the law survives to insist on insuring that it provides a more thorough evaluation of patients’ requests and physicians’ compliance. Proponents of legalization of assisted suicide in Oregon have referred to it as a `bold experiment.” Since the information necessary to evaluate the results of what is happening in Oregon is not being obtained, it is hard to consider what is occurring as an experiment. Secrecy—more in keeping with an illegal practice than with a new medical treatment for terminal illness sanctioned by the law of the state—needs to be replaced by an openness that permits the kind of examination and research that the practice warrants.