A Look Back: the 1999 assessment of the Death with Dignity Act’s first implementation in 1998

Excerpts from the first report

DISCUSSION / CONCLUSIONS 
Currently, Oregon is the only place in the world where physician-assisted suicide is legal. Physician-assisted suicide was briefly legalized in the Northern Territory of Australia between July, 1996 and March, 1997.5 In the Netherlands, physician-assisted suicide has been practiced for many years; although technically illegal, it has been rarely prosecuted.

The Death with Dignity Act continues to be the focus of highly charged ethical, legal, and medical debates. The role of the Oregon Health Division is neither to take sides nor to settle these controversies; however, we believe that the data collected on 1998 participants in the Death with Dignity Act and on patients who chose physician-assisted suicide are important to all concerned parties. Among the important findings from our 1998 data collection and comparison studies are:

              Physician-assisted suicide accounted for approximately 5 of every 10,000 deaths in Oregon in 1998. Patients with cancer who chose physician-assisted suicide accounted for 19 of every 10,000 cancer deaths in Oregon in 1998.

              Patients who chose physician-assisted suicide in 1998 were similar to all Oregonians who died of similar underlying illnesses with respect to age, race, sex, and Portland residence.

              Patients who chose physician-assisted suicide were not disproportionately poor (as measured by Medicaid status), less educated, lacking in insurance coverage, or lacking in access to hospice care.

              Fear of intractable pain and concern about the financial impact of their illnesses were not disproportionately associated with the decision to choose physician- assisted suicide.

              The choice of physician-assisted suicide was most strongly associated with concerns about loss of autonomy and personal control of bodily functions.

              In 1998, many hospitals and physicians in Oregon were unable or unwilling to participate in physician-assisted suicide.

              Physicians who wrote prescriptions for lethal medications for patients who chose physician-assisted suicide represented a wide range of specialties, ages, and years in practice.

Considerable debate has focused on the characteristics of terminally-ill patients who choose physician-assisted suicide. Some feared that patients who were minorities, poor, or uneducated would more likely be coerced into choosing physician-assisted suicide. Others feared that terminally-ill persons would feel pressured, either internally or through external forces (e.g., family members or health care systems), to choose physician-assisted suicide because of the financial impact of their illnesses. To date, the Oregonians who have chosen physician- assisted suicide have not had these characteristics.

Patients who chose physician-assisted suicide and our two comparison groups were similar with respect to age, sex, race, education level, and health insurance coverage. No person who chose physician-assisted suicide expressed a concern to their physician about the financial impact of their illness. The proportion of patients with private insurance and medicaid were similar among those who chose physician-assisted suicide and among controls. This provides some evidence that socioeconomic status was not associated with the decision to take lethal medications.

End of life care has made great strides in Oregon in recent years. Oregon ranks third, nationally, in the rate of hospice admissions. More than two-thirds of the patients who chose physician- assisted suicide were enrolled in a hospice program when they died. A similar proportion of control patients were also enrolled in hospice. Of the four patients who chose physician-assisted suicide, but who were not receiving hospice care, three had repeatedly refused enrollment offers. To date, lack of access to hospice care has not been associated with the decision to take lethal medications. Fear of intractable pain was also an end of life care issue not associated with physician-assisted suicide. Only one person who chose physician-assisted suicide expressed concern to her physician about inadequate pain control at the end of life (compared with 15 of 43 control patients). This may reflect confidence in one’s end of life care. Alternatively, recipients of lethal medications may not have been concerned about end of life pain because physician- assisted suicide offered them the option of avoiding intractable pain.

The primary factor distinguishing persons in Oregon selecting physician-assisted suicide is related to the importance of autonomy and personal control. Patients who chose physician-assisted suicide were more likely to be concerned about loss of autonomy and loss of control of bodily functions than control patients.* Autonomy was a prominent patient characteristic in physicians’ answers to open-ended questions about their patients’ end of life concerns. Many prescribing physicians reported that their patients decision to request a lethal prescription was consistent with a long-standing philosophy about controlling the manner in which they died.  The fact that 79% of persons who chose physician-assisted suicide did not wait until they were bedridden to take their lethal medication provides further evidence that controlling the manner and time of death were important issues to these patients. Thus, in Oregon the decision to request and use a prescription for lethal medications in 1998 appears to be more associated with attitudes about autonomy and dying, and less with fears about intractable pain or financial loss.

There are several limitations that are important to consider when interpreting these results. First, the number of patients who chose physician-assisted suicide in 1998 was relatively small. This limits our ability to detect, from a statistical standpoint, small differences between the characteristics of persons who chose physician-assisted suicide and control patients. Second, the possibility of physician bias must be considered. Physicians prescribing lethal medications may have spent more time exploring end of life concerns and care options with patients who requested lethal medications. Because of the unique nature of lethal prescription requests, physicians may have recalled their conversations and interactions with requesting patients in greater detail than physicians of terminally ill patients who did not request such prescriptions. Finally, the Death with Dignity Act requires the OHD to collect data on patients and physicians who participate in the Act. However, the OHD must also report any noncompliance with the law to the Oregon Board of Medical Examiners for further investigation. Because of this obligation, we cannot detect or collect data on issues of noncompliance with any accuracy. A 1995 anonymous survey of Oregon physicians found that 7% of surveyed physicians had provided prescriptions for lethal medications to patients prior to legalization. We do not know if covert physician-assisted suicide continued to be practiced in Oregon in 1998.

Considerable debate has also surrounded the interpretation of very limited data on the medications prescribed for physician-assisted suicide and the rapidity of their effects. With one exception, all of the lethal prescriptions were similar. This may reflect information available from Oregon physician-assisted suicide advocacy groups. Although all patients were unconscious within 20 minutes of medication ingestion, the time from ingestion to death ranged from 15 minutes to 11.5 hours. In four instances, patients died more than 3 hours after taking the medications, including the one patient who died 11. 5 hours afterward. The last patient fell asleep 5 minutes after taking all 9 grams of barbiturate, the same prescription given to 14 of the 15 persons who chose physician-assisted suicide. Physicians, patients, and their families should be aware that the time from medication ingestion to death is not always rapid or predictable.

In 1998, not all hospital systems or physicians in Oregon participated in physician-assisted suicide. Federal law prohibits participation by patients or physicians within federal health care systems such as Veterans Administration Hospitals and Indian Health Service clinics. Some health care systems, including at least one Catholic medical system in Oregon, have placed similar restrictions on patients and staff within their facilities. Although some physicians are unable to participate in the Death with Dignity Act because of restrictions by their employers, other physicians have chosen not to participate in physician-assisted suicide because of other concerns. Six of the patients who chose physician-assisted suicide had to approach more than one physician before finding one that would start the prescription process. Two-thirds of otherwise eligible control patients, had they asked, would not have received such prescriptions from the physician that we interviewed. Both findings provide evidence that a substantial proportion of Oregon physicians are not willing to participate in legalized physician-assisted suicide.

Physicians who wrote prescriptions for lethal medications for those patients who chose physician- assisted suicide represented a wide range of medical specialties, ages, and years in practice and were similar to physicians for control patients with respect to these characteristics. Several Oregon physicians have publicly acknowledged their participation in the Death with Dignity Act, but the majority of prescribing physicians have remained anonymous. Several physicians commented that despite the emotional impact of participating in a physician-assisted suicide, they were unwilling to share their experience with others because they feared repercussions from colleagues or patients if they did not keep their identity as a Death with Dignity Act participant anonymous.

In publishing this report, we recognize that the Death with Dignity Act has been and remains a focal point for ethical, legal, and medical debate. As required by the Act, we will continue to collect information regarding compliance with the statute, and we emphasize that our role is to do so as a neutral party. In accordance with the Act, we will make available to the public an annual statistical report of the information collected. Future reports may not, however, contain the level of detail provided in this first study.