Summary
- In a survey involving 7,534 responders from the NARCOMS registry, a significant proportion said they would consider physician-assisted suicide, given specific hypothetical situations, such as unbearable pain (65%) or if they were unable to enjoy anything that made life worth living. (50%).
- Responders differed from nonresponders in age and race, so this sample does not fully represent the MS population.
- The association with depression in particular raises the importance of adequately diagnosing and treating depression in people with MS.
- Studies like this one would not be possible without the participation of people with MS in patient registries. Join NARCOMS and iConquerMS
- The team (Ruth Ann Marrie, MD, PhD of University of Manitoba, Winnipeg, Canada, and colleagues) has published results in Neurology (2017;88:1–7).
Background: Talking to people with MS is the best way to learn about how it affects their lives, and this knowledge can then be used to improve care and quality of life. Recognizing this, the Consortium of Multiple Sclerosis Centers created a patient registry in 1993 called
NARCOMS (North American Research Committee on Multiple Sclerosis), to capture the real-life experiences of people living with MS. Similarly,
iConquerMS is seeking to create a patient-powered research network that includes at least 20,000 people with MS who contribute data on their health and other topics. Survey data will be made available to research scientists who are studying MS and similar diseases.
Five states (CA, CO, OR, VT, and WA) and Washington, D.C. have legalized physician-assisted suicide. Research has been limited on whether individuals with chronic illnesses such as MS might seek physician-assisted suicide. This team used the NARCOMS registry to assess the opinions of people with MS on this topic.
The Study: Investigators distributed the survey to 10,791 participants, of whom 7,534 responded. Of responders, 6,011 were female, and 6,884 were Caucasian. Respondents indicated whether they definitely would consider, probably would consider, probably would not consider, or definitely would not consider physician-assisted suicide (called physician-assisted death in the paper) in five hypothetical situations: (1) experiencing unbearable pain; (2) causing a financial burden to caregivers; (3) feeling extreme emotional distress; (4) inability to do things that make you happy; and (5) inability to enjoy anything that makes your life worth living. Responders did not have to answer all of the questions.
Results: The results show that, if experiencing unbearable pain, 65% of respondents would definitely or probably consider physician-assisted suicide; 50% percent would consider it if they were unable to enjoy anything that made life worth living.
Factors associated with reduced probability of considering physician-assisted suicide were higher levels of social support and greater religiosity. Past and current depression and moderate or severe pain were associated with increased probability of considering physician-assisted suicide.
The team (Ruth Ann Marrie, MD, PhD of University of Manitoba, Winnipeg, Canada, and colleagues) published their results in Neurology (
2017;88:1–7)
. NARCOMS is funded in part by the Consortium of Multiple Sclerosis Centers and the study was also supported in part by the Waugh Family Chair in Multiple Sclerosis.
Next Steps: Further research is necessary, since responders differed from nonresponders in age and race, so this sample does not fully represent the MS population.
Also, it’s important to understand what factors may contribute to considering physician assisted suicide. For example, depression in its various forms is one of the most common symptoms of MS. In fact, studies have suggested that clinical depression – the most severe form – is more frequent among people with MS than it is in the general population or in many other chronic illnesses. This study’s findings related to people who were depressed in particular raises the importance of adequately
diagnosing and treating depression in people with MS to improve their quality of life and happiness. Other possible factors contributing to a consideration of physician assisted suicide may be related to a need for additional support or for a greater feeling of control over one’s life – either of which might be filled in other ways.
Studies like this one would not be possible without the participation of people with MS in patient registries. Join
NARCOMS and
iConquerMS