ARTICLE IN BRIEF
A survey showing that many multiple sclerosis (MS) patients would consider physician-assisted suicide under certain scenarios underscores the need for greater attention to managing depression and MS symptoms, neurologists say.
More than one-third of surveyed multiple sclerosis patients said they would definitely or probably consider physician-assisted death if experiencing unbearable pain, researchers from the United States and Canada reported.
In addition to being white and female, those with current depression or anxiety, moderate to severe pain, and who are not undergoing immunotherapy were most likely to say they would consider physician-assisted death. Lower levels of social support and less religiosity were also associated with such responses, although less so, according to the findings published in the March 15 online edition of Neurology.
The investigators asked 7,534 patients to respond to five hypothetical situations:
In addition to experiencing unbearable pain, subjects were asked if physician-assisted death might be considered if they were causing a financial burden on caregivers; were feeling “extreme emotional distress”; were unable to do things that once made them happy; or were unable to enjoy anything “that makes life worth living.”
The relationship between depression and PAD bears special scrutiny, lead author Ruth Ann Marrie, MD, PhD, professor of neurology and community health sciences, and director of the multiple sclerosis clinic at the University of Manitoba, Winnipeg, told Neurology Today. This is especially important because the number of MS patients with undiagnosed depression is likely to be much higher than is recognized by themselves or their physicians, she said.
“Our findings suggest that untreated or undertreated depression likely plays a significant role in increased consideration of physician-assisted death. Unfortunately, neurologists do not get enough training in recognizing or treating depression, and many do not ask patients about symptoms,” said Dr. Marrie.
“As clinicians, we are not going far enough to identify and adequately treat depression in our MS patients or to educate them about potential symptoms. Patients also may feel uncomfortable asking about depression or accepting treatment because there is still a stigma attached to mental health issues.”
To date five states have enacted laws permitting physician-assisted death — Oregon, Vermont, Washington, Colorado, and California — and a court ruling allows it in Montana. In these states, individuals must have a terminal illness, be of sound mind, and have a prognosis of six months or less to live.
The AAN is in the process of developing a policy to address the issue.
The survey included patients enrolled in the North American Research Committee on Multiple Sclerosis Registry. Out of 6,400 patients who answered all five questions, 65.3 percent said they would definitely or probably consider physician-assisted death if pain were unbearable; 7.1 percent said they would definitely consider it under all five hypothetical situations.
Among those who would consider physician-assisted death in all five situations, 44.8 percent reported current depression and 23.3 percent had a current clinical diagnosis of anxiety. Of those undergoing immunotherapy, 75.6 percent said they would not consider physician-assisted death in any circumstance compared with 24.4 percent who said they would in certain situations.
Nearly 50 percent said they would definitely or probably consider physician-assisted death if unable to enjoy anything that made life worth living, but 19.9 percent said they would definitely not consider physician-assisted death under any of the listed circumstances.
Higher levels of disability were associated with reduced odds of considering physician-assisted death in all situations, which the investigators said reflected a form of “response shift” — the tendency for patients to adjust to disability as it progresses over time. Individuals with moderate or severe disability may also have a more positive perception of their lives than those with milder disability, who may not assign positive attributes to a future with greater disability, said Dr. Marrie.
In an accompanying editorial, James L. Bernat, MD, FAAN, and Michael P. McQuillen, MD, FAAN, called the findings “disturbing,” but noted that just because patients might say they would consider physician-assisted death does not necessarily mean they would request it if they found themselves in a hypothetical situation.
Dr. Bernat, the Louis and Ruth Frank Professor of Neuroscience and professor of neurology and neuroscience at the Geisel School of Medicine at Dartmouth and Dartmouth-Hitchcock Medical Center in Lebanon, NH, and Dr. McQuillen, who serves on the ethics committee at Santa Clara University in California, wrote that in states where physician-assisted death is permitted, most physicians have chosen to opt out of participating.
In the United States, less than 20 percent of physicians report having received requests for euthanasia or physician-assisted suicide, and 5 percent or less have complied. And in Oregon and Washington state, less than 1 percent of licensed physicians write prescriptions for physician-assisted suicide per year, according to a report of findings in the July 5 issue of the Journal of the American Medical Association.
“For our patients who muse about PAD [physician-assisted death], we should have a low threshold for referring them to palliative medicine to achieve optimal symptom palliation including the identification and treatment of depression,” Drs. Bernat and McQuillen wrote.
Timothy L. Vollmer, MD, FAAN, professor of neurology at the University of Colorado Health Sciences Center and medical director of the Rocky Mountain MS Center at Anschutz Medical Center in Aurora, told Neurology Today that the findings are consistent with his experience.
Colorado enacted a “death with dignity” law in November after a ballot initiative received overwhelming support, he said, and a few patients have discussed physician-assisted death with him over the last year.
“We now have pretty effective medications against disease progression, but these take about a year to become effective,” Dr. Vollmer said. “Patients need to understand that their symptoms might improve if they can just wait out the year.”
Neurologists in the state are discussing the new measure, Dr. Vollmer said, adding that the study findings should help bring attention to the importance of identifying depression in MS patients.
“The bottom line for us is that it is the patient's choice. As a physician, this is difficult. We try to find optimal treatment for depression and pain, but the current law does not require us to consider all of these issues. We need some kind of guidance.”
Physicians also need a better understanding of the benefits of existing therapies before signing off on physician-assisted death, he said.
“Neurologists should be aware of the risk of depression, especially because many patients will deny symptoms. Another problem is access to a psychiatrist,” he added. “In Colorado, getting psychiatric care benefits under Medicare is almost impossible.”
AAN MS Section Chair David E. Jones, MD, assistant professor of neurology at the University of Virginia School of Medicine in Charlottesville, said that he is disappointed that there is not more research on what might help patients in later stages of the disease.
“I find it shocking that not much is done for these patients in whom a disease-modifying therapy might not be appropriate,” he said, adding that not many of his patients ask about physician-assisted death. “It is an especially sensitive issue and some have very strong feelings about it,” he told Neurology Today.
Despite advances in disease-modifying therapies, he said research focused on symptom management has been relatively limited. “In the 1990s there were very few disease-modifying therapies for MS and today we have at least 14, but the emphasis, especially in training, remains on which drug to use. There is not much emphasis on what we could do for advanced patients in terms of treating depression, pain, and spasticity.”
Dr. Jones said that he always asks patients about depressive symptoms, but also other questions. “I ask my patients what they do for fun, usually while I'm testing their reflexes. It distracts them and helps them relax. For those who say they don't do anything, occupational or recreational therapy may be very helpful. People with MS should focus on what they can do, not what they can't. They might be limited physically but there is always some activity they can participate in.”
He noted that with a range of second-generation MS treatments today, physicians seem even less focused on managing symptoms.
“One hurdle is proper training, but the problem of relegating symptomatic management to secondary importance is systemic. We don't have as much research on symptom management, especially assistive equipment, and even access to therapy can be difficult and is limited by many insurers,” he told Neurology Today. “I have a lot of patients that I refer for home physical therapy, even if only for adjunctive management of spasticity, prevention of contractures, and home safety evaluations.”
EXPERTS: ON PHYSICIAN-ASSISTED SUICIDE IN MS