Death with Dignity Program at Seattle Cancer Care Alliance 


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Our Death with Dignity program has been well accepted by patients, families, and staff. We attribute this to the professionalism of our advocates, the great care taken by our clinicians, and the willingness of the Seattle Cancer Care Alliance leadership to allow considerable debate before the program was developed.

—Elizabeth Trice Loggers, MD, PhD, and colleagues

After passage of the Washington Death with Dignity Act in November 2008, the Seattle Cancer Care Alliance—the site of outpatient care for patients with cancer from Fred Hutchinson–University of Washington Cancer Consortium—developed a Death with Dignity program. The program is adapted from existing programs in Oregon, which, in 1997 became the first state to pass legislation that offered a physician-assisted approach to dying for adults with poor short-term prognoses. Under the Washington law, competent adults residing in the state who have a life expectancy of 6 months or less because of a diagnosed medical condition can request and self-administer lethal medication prescribed by a physician.

In a recent New England Journal of Medicine article, Elizabeth Trice Loggers, MD, PhD, and colleagues described their experience with the program at Seattle Cancer Care Alliance.1

Elements of Washington State Law

Essential elements of the Washington law are as follows: The patient must make both an initial oral and written request to participate in the program, and must wait 15 days to make a requisite second oral request. Before prescribing the lethal medication, the prescribing physician must determine the terminal nature of the disease; determine the patient’s competency and voluntary nature of the request; confirm Washington State residency; assess informed consent on the basis of the patient’s awareness of the medical diagnosis, prognosis, risks of the medication, result of the medication (death), and alternatives (ie, palliative care, hospice, and pain control); and recommend that the patient notify next of kin, have someone present at ingestion, and not take the medication in a public place. A consulting physician must confirm the diagnosis, patient competency, and voluntary nature of the request.

At the time of prescribing, the prescribing physician must offer the patient the opportunity to rescind the request, verify that the patient is making an informed decision, and deliver the prescription directly to the pharmacist. The pharmacist dispenses the medication directly to the patient or an identified agent of the patient. At the Seattle Cancer Care Alliance program, secobarbital currently is used as the lethal medication, due to lack of pentobarbital. Overall, pentobarbital has been used in 16.9% and 36.1% of program participants in Washington and Oregon, respectively.

Role of Advocates

In the Seattle Cancer Care Alliance program, each potential participant is assigned a patient advocate, a social worker who assists patients, families, pharmacists, and physicians throughout the program process. The advocate’s role includes providing information to patients and families about the process and its alternatives; tracking program compliance; assessing the patient’s rationale for and interest in further participation; making referrals to the psychiatry and psychology service if warranted; determining whether the attending physician will act as the prescribing physician; and identifying a prescribing physician, if the attending physician declines, and a consulting physician from among willing providers.

In addition, the advocate arranges for a physician to be present at time of medication ingestion if requested, provides grief support and legacy support, and requests that the family inform the program when the patient ingests the medication. In this way, program personnel can provide assistance in case of complications, offer bereavement support, and assist the prescribing physician in completing required after-death reporting forms.

No staff or faculty members at Seattle Cancer Care Alliance are compelled to participate in the program. Of physicians responding to a confidential survey, 35.8% were willing to act as a prescribing or consulting physician, 25.9% as a consulting physician only, and 38.3% were unwilling to participate or undecided about participation.

Program Participation

As of December 2011, 255 Washington State residents had participated in the Washington Death with Dignity program, with 78% of these patients having cancer as their underlying terminal diagnosis. Among a total of 596 residents participating in Oregon programs, 81% had cancer as the underlying diagnosis.

At Seattle Cancer Care Alliance, 114 patients inquired about the program between March 5, 2009, and December 31, 2011. Of these, 44 (38.6%) did not pursue the program further or were deemed ineligible. Participation was refused to only one patient, who expressed unwillingness to ingest the medication in a private setting. A total of 30 patients (26.3%) initiated participation via an initial oral request but either chose to not pursue the process or died before completing it.

In total, 40 patients (35.1%) received prescriptions for lethal medication. All 40 of these patients have died, 24 (60% of those receiving prescriptions) after ingesting the medication. In all of Washington State, 241 (94.5%) of 255 patients receiving prescriptions have died, with 157 (65.1%) of the 241 dying after ingesting medication. In Oregon programs, 596 patients (63.7%) of the 935 receiving prescriptions died after ingesting medication. In the Seattle Cancer Care Alliance program, 13 (54.2%) of the 24 patients who died after ingesting medication were enrolled in hospice at the time of their initial request and 20 (83.3%) died at home. The median time to death after ingestion of medication was 35 minutes in Seattle Care Alliance patients.

Participant Characteristics

Among the 40 patients who received prescriptions at the Seattle Cancer Care Alliance, 55.0% were male, 72.5% were non-Hispanic whites, 55.0% were married, 97.5% had at least completed high school, and 35.0% were aged 18 to 64 years, 57.5% were aged 65 to 84 years, and 7.5% were 85 years or older. With regard to insurance status, 30.0% had private insurance, 32.5% had Medicare, Medicaid, or other public insurance, 27.5% had a combination of private and public insurance, and 10.0% had no insurance.

Of 36 Seattle Cancer Care Alliance patients receiving prescriptions for whom information was available, the most frequently cited end-of-life concerns were loss of autonomy (97.2%), inability to engage in enjoyable activities (88.9%), and loss of dignity (75.0%). Similar proportions of all patients in Washington (90.6%, 88.8%, and 74.8%, respectively) and Oregon (90.9%, 88.3%, and 65.2%) expressed such concerns. Other frequently cited reasons among the Seattle Care Alliance patients included loss of control of bodily functions (27.8%), burden on family, friends, or caregivers (22.2%), and inadequate pain control or concern about it (22.2%).

Of all 40 patients receiving prescriptions, 80% informed family of their decision (as did 93.6% of all Washington patients and 94.4% of Oregon patients). The median duration of patient-physician relationship was 33 weeks (14 weeks for all Washington patients and 12 weeks for Oregon patients). It is unknown whether prescribing physicians or other providers were present at ingestion of medication for the 24 patients from Seattle Care Alliance who took the medication. Among cases with information available, the prescribing physician was present at ingestion for 4.5% of all patients in Washington State and for 19.0% of patients in Oregon, with another provider (and not the prescribing physician) being present in 51.0% and 43.9% of cases, respectively.

In total, 11 patients lived longer than the life expectancy of 6 months; of these, 9 died after ingesting medication at an average of 7.4 weeks after the 6-month period. The program does not inform prescribing and consulting physicians when program participants live longer than the expected 6 months, due to concern that such information might result in unintentional delay of prognostic conversations until clinicians feel more certain of timing and that this might reinforce “the more persistent and likely problem of communicating prognosis (too) late in the course of illness.”

None of the patients who enquired about the program at Seattle Cancer Care Alliance and were found to have current or previous depression or decisional incapacity chose to continue the process, and none of the patients continuing the process were found to require mental health evaluation for depression or decisional capacity during the process.

Patient, Family, and Staff Experience

In the Seattle Cancer Care Alliance program, no unexpected complications have occurred. One patient, however, died a day after taking medication, with the prolongation of the process causing distress for family members and clinicians; similar cases have occurred in other Washington and Oregon programs. No complaints regarding the program process or manner of death have been received from family or caregivers. Families have described the death as peaceful, even in cases in which death has taken longer than the average of approximately 35 minutes. Both patients and families have frequently expressed gratitude after the patient has received the prescription—irrespective of whether the prescription was filled or the medication ingested—citing the importance of gaining a sense of control over their situation.

The authors stated:

Our Death with Dignity program has been well accepted by patients, families, and staff. We attribute this to the professionalism of our advocates, the great care taken by our prescribing and consulting clinicians when interacting with patients and families, the low profile of the program overall, and the willingness of the Seattle Cancer Care Alliance leadership to allow considerable debate before the program was developed. A few clinicians who were strongly opposed to the Death with Dignity program subsequently expressed their willingness to participate as consulting or prescribing clinicians, which further supports acceptance of the program.

The authors noted that while the program has been well accepted by patients and clinicians, there remain issues to be addressed. For example, the authors note that 8 of 36 patients receiving prescriptions cited uncontrolled pain or fear of future symptoms among their end-of-life concerns, despite the fact that Seattle Cancer Care Alliance provides specialized care for pain and palliative care services. Program participants have only infrequently requested these services. Although this may be because patients do not have pain at the time of their initial request, the program will henceforward routinely offer palliative care consultations to all program participants.

The authors concluded, “[O]ur Death with Dignity program both allows patients with cancer who wish to consider this option to do so within the context of their ongoing care and accommodates variation in clinicians’ willingness to participate. The program ensures that patients (and families) are aware of all the options for high-quality end-of-life care, including palliative and hospice care, with the opportunity to have any concerns or fears addressed, while also meeting state requirements.” ■

Disclosure: For full disclosures of the study authors, visit www.nejm.org.

Reference

1. Loggers ET, Starks H, Shannon-Dudley M, et al: Implementing a Death with Dignity program at a comprehensive cancer center. N Engl J Med 368:1417-1424, 2013.


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