Even before Oregon passed its Death with Dignity Act, amyotrophic lateral sclerosis patients would question neurologist Wendy S.W. Johnston about assisted suicide.
Some asked directly. Others used coded language, she recently recalled, as in “Would I allow them not to linger?”
Though she no longer practices in Oregon—Dr. Johnston is medical director of the amyotrophic lateral sclerosis (ALS) clinic at the University of Alberta Hospital in Edmonton—the question still gets asked.
“The issues are there, whether [assisted suicide] is legal or not,” she said. “[The request] is going to happen, and you have to be prepared.”
Many physicians are not, according to Dr. Johnston and Lora Clawson, M.S.N., a nurse practitioner who directs ALS clinical services at Johns Hopkins University Hospital in Baltimore. Often, doctors are reluctant to talk not just about assisted suicide, they said, but also about death.
Both Dr. Johnston and Ms. Clawson served on a work group of ALS experts assembled by the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care program. Citing evidence of ALS patients' interest in hastening their own deaths, the panel suggested that dodging these tough topics is not benign.
Its report states: “In avoiding topics of euthanasia and physician-assisted suicide, physicians may be avoiding appropriate discussion of good end-of-life care and consequently not providing appropriate palliative care, including medications” (“Completing the Continuum of ALS Care: A Consensus Document,” 2004; www.promotingexcellence.org/als/als_report).
Dr. Johnston was also a coauthor with Dr. Linda Ganzini on influential studies of ALS patients' attitudes toward the Oregon law (N. Engl. J. Med. 1998;339:967–73; Neurology 1999;52:1434–40). Dr. Ganzini authored a report showing that residents of Oregon with ALS are 20 times more likely to die by assisted suicide. (See related story this page.)
When interviewed for this story, Dr. Johnston questioned whether physician discomfort with talking about end-of-life issues has helped to make ALS a risk factor for assisted suicide. “Hastened death looks really attractive when you are told there is nothing we can do,” she said, reporting that many patients “feel damaged” by how they are told their diagnosis.
Patients should be assured at the time of diagnosis that their physicians will not let them suffer and that the patients and their families will have the services they need, she said. Inadequate support for the patients with ALS and their families is a particularly pressing issue, especially in rural areas, according to Dr. Johnston.
At the same time, she said, patients should be encouraged to make decisions about ventilator support and other aspects of palliative care, to leave written instructions, and to choose people they trust to act as future health care proxies, so they can control their deaths even when they no longer have physical control over their bodies.
“Whether the patient asks covertly or overtly [about assisted suicide], the proper response is neither to hand over a prescription nor to shut the door and say, ‘I don't do that.’ This is an opportunity to openly discuss what happens at the end of life,” she said. Similarly, Ms. Clawson said what patients most need at this point is “not to feel abandoned because you as a health care practitioner are uncomfortable with death.”
“Health care practitioners should be in a position to help patients execute a good death rather than resort to desperate measures, whether by [Dr. Jack] Kevorkian or prescription drugs,” she said.
Most patients regain their equilibrium after the devastating diagnosis of ALS with support and can even consider the diagnosis as “a gift of time,” Ms. Clawson said.
“People in car accidents don't have time to right any wrongs in their lives, to tell families they loved them, to work on things they put off, and to do things differently with their relationships,” she said, telling of dying parents who find comfort by recording messages for their young children.
Ms. Clawson said she favors the Oregon law, but she hopes it will not be used often. “A lot of people just want those prescriptions in hands,” she said. “Many don't even act on them. They want the comfort of feeling in control.”
Dr. Johnston said she found she could not write a lethal prescription but did not oppose assisted suicide and questioned why it has become a medical issue.
“I was okay with the Oregon Death with Dignity Act, as long as I could offer full services to everyone as an alternative,” she said, adding, “I don't have an issue with someone using the law. I do have an issue with someone not getting appropriate ALS care.”
If physicians are not comfortable discussing options when making an ALS diagnosis, she urged them to form an alliance with a health care professional such as Ms. Clawson, who will talk with their patients and make sure they have access to support services.
Neurologists should also aim for continuity of care, she added, as other physicians usually take over care after diagnosis. Having a series of practitioners ask ALS patients repeatedly about end-of-life decisions is no more desirable than dodging the issue.
ALS patients do control their deaths, regardless of whether they choose assisted suicide, Ms. Clawson said. “Most of us who work with ALS patients know patients choose the date and time when they die,” she said, describing as typical the dying patient who is waiting for a child to come to the hospital or hospice from out of state. “The daughter gets there, and the patient dies,” she said.
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