Appendix B
OREGON AND PHYSICIAN-ASSISTED DYING

OREGON’S LEGAL EXPERIMENT WITH ASSISTED DYING

In 1994, Oregon Death with Dignity was founded for the purpose of promoting the legal right for patients with terminal illness to receive overt physician assistance in ending life. The efforts of this group were successful, and in that same year, the citizens of the state approved the Death with Dignity Act in a referendum. The Act allowed physicians legally to prescribe a medication that could be taken voluntarily by an informed patient to end life in certain terminal situations and under certain circumstances, described in the next section.

The Death with Dignity Act initially met with various attempts to nullify it legally, and its implementation did not occur until 1997. Subsequently, in 2001, U.S. Attorney General John Ashcroft attempted to prevent physicians from continuing to write prescriptions in conjunction with the Oregon law, but he and his successor were rebuffed by the courts. The matter reached the U. S. Supreme Court, which ruled in January 2006 that the Attorney General had overstepped his authority. It was a narrowly drawn opinion that did not address constitutional issues, but it nevertheless allowed the Oregon law to remain operative.

THE OREGON LAW’S PROVISIONS

The Oregon law states that it is legal for a doctor to prescribe a barbiturate for the purpose of the patient ending life when he or she is expected to die within six months from a terminal illness and when other stipulations are met.

• The patient must be an adult who is eighteen years of age or older, has lived in Oregon for at least six months, and makes a voluntary, written request to the physician for such assistance, plus two additional oral requests separated by at least fifteen days and documented in the record by the physician.
• The request must be witnessed by two persons who attest that the request is voluntary and not a result of coercion.
• Two independent physicians must attest that the disease is terminal with less than six months until death is expected.
• The patient must be fully informed as to the diagnosis and prognosis, and the physician must attest that the patient is capable of making medical decisions.
• The consequences of taking the medication must be fully understood, namely, that it will produce death. Feasible alternatives such as comfort care, hospice care, and pain control must be understood by the patient.
• The patient must be able to self-administer the medication.
• The physician must document in the medical record the diagnosis, prognosis, potential risks of taking the medication, the result of taking the medication, and the feasible alternatives, including, but not limited to, hospice care, symptom control, and comfort care. The physician must attest that he or she has informed the patient of the right to rescind the request.
• The prescribing physician must obtain a consultation with a second doctor who confirms the diagnosis and prognosis and attests that the patient is capable, acting voluntarily, and making an informed decision. Counseling with a psychiatrist or psychologist must be requested if either the prescribing physician or the consulting physician questions the patient’s capability to make an informed choice or judgment.
• The prescribing physician must request that the patient notify the next of kin of the prescription request.
• The patient must be offered opportunity to rescind the request.
• The patient must be an Oregon resident.
• There must be no denial of insurance as a result of the action.
• The physician must report to the Oregon Public Health Services what has happened along with documentation that all requirements have been met, as stated previously. The names of the doctor and the patient are kept confidential.

These requirements have been exceedingly well thought out, and they provide strong and reliable protection against the possibility of abuse.

USE OF THE OREGON LAW

Since the Oregon law became operative in 1997, 246 persons have died in the first eight years through the end of 2005, utilizing lethal prescriptions for barbiturates in accordance with the provisions of the law. This is not a large number of people who have taken their lives in this way. The number of such deaths annually increased only slowly for the first five years the law was in effect, and since 2002, the number has remained relatively stable (39 in 2005). These numbers are small (approximately 0.13 percent) relative to the overall number of deaths in Oregon—approximately 30,000 annually.

The numbers are striking in several ways. First, the number of times prescriptions have been written and utilized relative to the number of deaths in the state during that time is very small, indicating that there has been no rush to utilize the option. Second, the number of people who actually took the medication, compared to the number of patients who obtained a prescription for it (60 prescriptions and 37 deaths in 2004, for example) indicates that the mere possession of the means to end intolerable suffering is sufficiently reassuring to many patients that the necessity of taking their life is obviated. Third, there has not been a single known case of abuse of the spirit or letter of the law. Lastly, the rate of complications (failure to achieve a rapid and peaceful death) has been extremely low (see the report that follows). The data speaks for itself to the opponents of the law, indicating no evidence for a “slippery slope” once the door was opened.

As indicated in the latest annual report (that follows), the reasons people have cited for taking their lives under the provisions of this law have been (in order of decreasing importance): loss of autonomy— 86 percent; less able to engage in activities that make life enjoyable— 85 percent; losing control of bodily functions—57 percent; burden on family, friends, and caregivers—37 percent; inadequate pain control—22 percent; and financial implication of treatment— 3 percent.

See the excerpts from the Eighth Annual Report on Oregon’s Death With Dignity Act (that follows) for more details of how this law has operated so successfully.

EIGHTH ANNUAL REPORT ON OREGON’S DEATH WITH DIGNITY ACT

The following sections have been excerpted from the Eighth Annual Report on Oregon’s Death with Dignity Act, which was released by the Department of Human Services, Oregon State Public Health, on March 9, 2006. The full twenty-four-page report can be found on the Web at www.oregon.gov/DHS/ph/pas/docs/year8.pdf.

Contributing Editor: Richard Leman, MD
Data Analysis: David Hopkins, MS
State Epidemiologist: Metvin A. Kohn, MD, MPH
This assessment was conducted as part of the required surveillance and public health practice activities of the Department of Human Services and was supported by Department funds. For more information, contact: Darcy Niemeyer, Department of Human Services, Oregon State Public Health, Office of Disease Prevention and Epi-demiology, 800 N.E. Oregon Street, Suite 730, Portland, OR 97232, e-mail: darcy.niemeyer@state.or.us, 971-673-0982, Fax: 971-673- 0994, www.oregon.gov/DHS/ph/pas/index.shtml.

Summary

Physician-assisted suicide (PAS) has been legal in Oregon since November 1997, when Oregon voters approved the Death with Dignity Act (DWDA) for the second time (see History). The Department of Human Services (DHS) is legally required to collect information regarding compliance with the Act and make the information available on a yearly basis. In this eighth annual report, we characterize 38 Oregonians who died in 2005 following ingestion of medications prescribed under provisions of the Act, and look at whether the numbers and characteristics of these patients differ from those who used PAS in prior years. Patients choosing PAS were identified through mandated physician and pharmacy reporting. Our information comes from these reports, physician interviews and death certificates. We also compare the demographic characteristics of patients participating during 1998–2005 with other Oregonians who died of the same underlying causes.

In 2005, 39 physicians wrote a total of 64 prescriptions for lethal doses of medication. In 1998, 24 prescriptions were written, followed by 33 in 1999, 39 in 2000, 44 in 2001, 58 in 2002, 68 in 2003, and 60 in 2004. Thirty-two of the 2005 prescription recipients died after ingesting the medication. Of the 32 recipients who did not ingest the prescribed medication in 2005, 15 died from their illnesses, and 17 were alive on December 31, 2005. In addition, six patients who received prescriptions during 2004 died in 2005 as a result of ingesting the prescribed medication, giving a total of 38 PAS deaths during 2005. One 2004 prescription recipient, who ingested the prescribed medication in 2005, became unconscious 25 minutes after ingestion, then regained consciousness 65 hours later. This person did not obtain a subsequent prescription and died 14 days later of the underlying illness (17 days after ingesting the medication).

After an initial increase in PAS use during the first five years the Act was in effect, the number of Oregonians who use PAS remained relatively stable since 2002. In 1998, 16 Oregonians used PAS, followed by 27 in 1999, 27 in 2000, 21 in 2001, 38 in 2002, 42 in 2003, and 37 in 2004. The ratio of PAS deaths to total deaths trended upward during 1998–2003, peaking at 13.6 [per 10,000] in 2003 and has since remained stable. In 1998 there were 5.5 PAS deaths per every 10,000 total deaths, followed by 9.2 in 1999, 9.1 in 2000, 7.1 in 2001, 12.2 in 2002, 13.6 in 2003, 12.3 in 2004, and an estimated 12/10,000 in 2005.

Compared to all Oregon decedents in 2005, PAS participants were more likely to have malignant neoplasms (84% vs. 24%), to be younger (median age 70 vs. 78 years), and to have more formal education (37% vs. 15% had at least a baccalaureate degree).

During the past eight years, the 246 patients who took lethal medications differed in several ways from the 74,967 Oregonians dying from the same underlying diseases. Rates of participation in PAS decreased with age, although over 65% of PAS users were age 65 or older. Rates of participation were higher among those who were divorced or never married, those with more years of formal education, and those with amyotrophic lateral sclerosis, HIV/AIDS, or malignant neoplasms (see Patient Characteristics).

Physicians indicated that patient requests for lethal medications stemmed from multiple concerns, with eight in 10 patients having at least three concerns. The most frequently mentioned end-of-life concerns during 2005 were: a decreasing ability to participate in activities that made life enjoyable, loss of dignity, and loss of autonomy (see End-of-Life Concerns).

Complications were reported for three patients during 2005; two involved regurgitation, and, as noted above, one patient regained consciousness after ingesting the prescribed medication. None involved seizures (see Complications). Fifty percent of patients became unconscious within five minutes of ingestion of the lethal medication and the same percentage died within 26 minutes of ingestion. The range of time from ingestion to death was from five minutes to 9.5 hours. Emergency Medical Services were called for one patient in order to pronounce death.

The number of terminally ill patients using PAS has remained small, with about 1 in 800 deaths among Oregonians in 2005 resulting from physician-assisted suicide.

Lethal Medication

During 1998–2004, secobarbital was the lethal medication prescribed for 101 of the 208 patients (49%). During 2005, as during previous years, all lethal medications prescribed under the provisions of the DWDA were barbiturates. In 2005, 34 patients (89%) used pentobarbital and 4 patients (11%) used secobarbital. Since the DWDA was implemented, 56% of the PAS patients used pentobarbital, 43% used secobarbital, and 2% used other medications. (Three used secobarbital/amobarbital, and one used secobarbital and morphine).

End-of-Life Concerns

Providers were asked if, based on discussions with patients, any of seven end-of-life concerns might have contributed to the patients’ requests for lethal medication. In nearly all cases, physicians reported multiple concerns contributing to the request. The most frequently reported concerns included a decreasing ability to participate in activities that make life enjoyable (89%), loss of dignity (89%), and losing autonomy (79%).

Comments

Since 2002, both the number of prescriptions written for physician-assisted suicide and the number of terminally ill patients taking lethal medication have remained relatively stable with about 1 in 800 deaths among Oregonians in 2005 resulting from physician-assisted suicide. A large population study of dying Oregonians published in 2004 found that 17% considered PAS seriously enough to have discussed the matter with their family and that about 2% of patients formally requested PAS. Of the 1,384 decedents for whom information was gathered, one had received a prescription for lethal medication and did not take it. No unreported cases of PAS were identified.

Overall, smaller numbers of patients appear to use PAS in Oregon compared to the Netherlands. However, as detailed in previous reports, our numbers are based on a reporting system for terminally ill patients who legally receive prescriptions for lethal medications, and do not include patients and physicians who may act outside the provisions of the DWDA.

Over the last eight years, the rate of PAS among patients with ALS in Oregon has been substantially higher than among patients with other illnesses. This finding is consistent with other studies. In the Netherlands, where both PAS and euthanasia are openly practiced, one in five ALS patients died as a result of PAS or euthanasia. A study of Oregon and Washington ALS patients found that one-third of these patients discussed wanting PAS in the last month of life. Though numbers are small, and results must be interpreted with caution, Oregon HIV/AIDS patients are also more likely to use PAS.

Physicians have consistently reported that concerns about loss of autonomy, loss of dignity, and decreased ability to participate in activities that make life enjoyable are important motivating factors in patient requests for lethal medication across all eight years. Interviews with family members during 1999 corroborated physician reports. These findings were supported by a study of hospice nurses and social workers caring for PAS patients in Oregon.

While it may be common for patients with a terminal illness to consider PAS, a request for PAS can be an opportunity for a medical provider to explore with patients their fears and wishes around end-of- life care, and to make patients aware of other options. Often once the provider has addressed a patient’s concerns, he or she may choose not to pursue PAS.