By the end of 2011, of the 255 Washington state residents who received a prescription for lethal medication to end their lives under the state's Death with Dignity Act—most of them diagnosed with terminal cancer—40 were patients at Seattle Cancer Care Alliance.
Because several states are considering similar Death with Dignity laws, and because such legislation disproportionately affects cancer patients and their families, SCCA conducted a study to describe the institution's implementation of the law and experience with patients who chose to participate. The study's findings appear in the April 11 issue of The New England Journal of Medicine.
The study found that SCCA's Death with Dignity program was rarely used, but in cases where it was, the program was well-accepted by patients and physicians. "Qualitatively, patients and families were grateful to receive the lethal prescription whether or not it was used," the authors wrote.
The most common reasons for participating included loss of autonomy, an inability to engage in enjoyable activities and loss of dignity.
"People who pursue Death with Dignity tend to be individuals who want to be independent and want to have control over the conditions and timing of their final moments of life," said Dr. Elizabeth Trice Loggers, corresponding author and medical director of SCCA's Supportive and Palliative Care Service.
In March 2009, after a voter-approved referendum, Washington became the second state, after Oregon, to enact a Death with Dignity law. Under Washington law, competent adults residing in the state with a life expectancy of six months or less due to a diagnosed medical condition may request and self-administer lethal medications prescribed by a physician.
SCCA patient participants
A total of 114 patients inquired about SCCA's Death with Dignity program between March 5, 2009, and Dec. 31, 2011. Of these, 44 did not pursue the program; 30 others initiated the process, but either elected not to continue or died before completing the steps necessary to obtain a prescription for lethal medicine. Forty patients received a prescription, and 24 died after ingesting the barbiturate medication. The remaining 16 patients did not use the drug and eventually died of their disease.
The participants were mostly Caucasian men with more than a high school education, married and age 42-91.
Policy debate and decision
Loggers said that while SCCA's goals are to cure cancer and save lives, providers also must be prepared to help patients with terminal disease by offering palliative care and other end-of-life services.
SCCA's Death with Dignity program was adapted from existing programs in Oregon after much study, internal debate and consultation with Oregon Health & Science University's Dr. Linda Ganzini, considered the country's foremost expert on death with dignity programs.
Among the decisions made to address potentially controversial aspects:
- SCCA does not accept new patients solely for the purpose to access the Death with Dignity program.
- Program information is not available in public spaces of the clinic, effectively requiring patients to initiate requests with their doctor.
- Participants are required to sign an agreement not to take the lethal prescription in a public area or manner. This is more restrictive than the Death with Dignity state law.
- SCCA does not compel physicians or staff members to participate in the program.
According to Loggers, the decision to offer a Death with Dignity program to patients was a small part of offering a broad spectrum of high quality cancer care.
"You can't ignore death if you are going to be a good medical oncologist or an organization that cares well for cancer patients and their families," said Loggers, also of the Clinical Research Division and Group Health Research Institute.
"In a pluralistic society where 58 percent of Washington voters affirmed that terminally ill individuals should have Death with Dignity as a legitimate choice at end of life, we felt compelled to honor that for patients and families," she said. "It's also important to note that the vast majority of families, including those who also select Death with Dignity, opt for palliative and hospice care at end of life. The existence of Death with Dignity hasn't changed that."
Following referral to the Death with Dignity program, each patient is assigned a social worker who serves as advocate and assists the patient, family, physicians and other health care providers through a detailed, multi-step process.
Upon completion of all steps, the patient is required to sign formal documents. The patient and family then meet with both the prescribing and consulting physicians, who review the diagnosis, prognosis and medication risks. Alternatives to lethal medication are discussed for a second time. After the mandatory 15-day waiting period, if all legal requirements are met, a written prescription goes to the SCCA pharmacy. A pharmacist educates the patient and family about using the medication.
Assessing the program
"Anecdotally, families describe the death as peaceful (even when death has taken longer than the average of approximately 35 minutes)," the authors wrote.
None of the patients who chose to obtain a prescription had current or historical depression or decision-making incapacity. The state law requires a mental health evaluation if physicians believe the patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment.
Study authors include Drs. Fred Appelbaum and Marc Stewart, of the Hutchinson Center's Clinical Research Division and SCCA; Dr. Anthony Back and Moreen Shannon-Dudley, SCCA; and Dr. Helene Starks, University of Washington.