The Story of People Who Pursue Death With Dignity

Most of the 255 Washington residents who received a prescription for lethal medication by the end of 2011, to end their lives under the state's Death with Dignity Act had been diagnosed with terminal cancer.

Of those, 40 were patients at Seattle Cancer Care Alliance, part of the Pacific Northwest's only National Cancer Institute-designated Comprehensive Cancer Center.

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 Washington state law and its experience with patients who chose to participate. The study's findings are published in the April 11, 2013 issue of The New England Journal of Medicine.

The study found that overall, SCCA's Death with Dignity program was rarely used, but in those 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 study found 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 Elizabeth Trice Loggers, M.D., Ph.D., corresponding author and medical director of SCCA's Supportive and Palliative Care Service.

Washington was the second state, after Oregon, to enact a Death with Dignity law. It was passed in November 2008 after a voter-approved referendum and enacted in March 2009. 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. Prescribing physicians do not assist patients to ingest the medicine.

SCCA patient participants
A total of 114 patients inquired about the institution'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 medication, which was secobarbital, a barbiturate. The average time from ingestion to death was 35 minutes. The remaining 16 patients did not use the drug and eventually died of their disease.

For this study, SCCA patients were characterized as participants if they completed the steps required for a physician to prescribe lethal medication.

The participants were mostly Caucasian men with more than a high school education, married and ranged in age from 42 to 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. Significant internal debate took place before a policy was written and approved. Linda Ganzini, M.D., M.P.H., professor of psychiatry and medicine at Oregon Health & Science University and the country's foremost expert on death with dignity programs, was brought in to consult.

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.
- Information is not posted 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, which only recommends this.
- No physicians or staff members are compelled to participate. A confidential survey asked about 200 SCCA physicians their willingness to act as prescribing or consulting clinicians as defined in the law. Eighty-one responded, with 50 physicians willing to participate in either role. Thirty-one physicians were unwilling or undecided.

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.

"Throughout history, cancer has been one of the paradigmatic diseases where we must prospectively deal with the knowledge of death," she said. "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, who is a medical oncologist and board-certified in hospice and palliative medicine. She is also an assistant member of the Clinical Research Division at Fred Hutchinson Cancer Research Center and an assistant investigator at 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 continued. "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."

How Death with Dignity program is implemented
Following referral to the Death with Dignity program, each patient is assigned a social worker to serve as an advocate who assists the patient, family, physicians and other health care providers through the multi-step process, which includes:

- describing the process to the patient and family (including offering alternatives such as palliative care and hospice)
- conducting a preliminary medical chart review to confirm a diagnosis of terminal disease
- identifying a physician who will write the prescription
- verifying legal residency
- completing a psychosocial assessment
- monitoring compliance with required documentation

Upon completion of these steps, formal documents are given to the patient, who is required to sign them. 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 again discussed. After the mandatory 15-day waiting period, if all legal requirements are met, a written prescription is sent to the SCCA pharmacy. A pharmacist then meets with the patient and family to educate them about using the prescribed medication.

Assessing the program
The authors reported no unexpected complications except for a patient who died a day after taking the lethal medication, which caused caregiver and clinician distress. Similar cases have been reported by other Washington and Oregon institutions.

"Anecdotally, families describe the death as peaceful (even when death has taken longer than the average of approximately 35 minutes)," the authors wrote. "We have not received complaints from family members or caregivers regarding our process or the manner of death of any patients."

None of the patients who chose to obtain a prescription were found to have current or historical depression or decision-making incapacity. None were deemed to need a mental health evaluation, which the law requires if physicians believe the patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment.

The authors attribute the acceptance of the Death with Dignity program to the professionalism of the patient advocates, the care provided by clinicians when interacting with patients and families, the overall low profile of the program, and the willingness by SCCA leadership to allow significant upfront debate. Some physicians who initially were strongly opposed to the policy eventually joined the program, which further supported its acceptance, according to the authors.

Editor's note: Please contact the NEJM Media Center at 781-434-7847 or
mediasupport@nejm.org to obtain an embargoed copy of the paper, "Implementing a Death with Dignity Program at a Comprehensive Cancer Center."

Source: Newswise