Registry provides insight into current opinion of medical assistance in dying in people living with multiple sclerosis

Background

Public support for legalized physician-assisted death (or medical assistance in dying) has grown over time in many countries. In 2015, the Supreme Court of Canada ruled that some sections of the Criminal Code would need to change to comply with the Canadian Charter of Rights and Freedoms. Specifically, sections which prohibit medical assistance in dying (MAID) under certain conditions would no longer be valid. The federal government passed Bill C-14, legislation that allows eligible adults to request medical assistance in dying in 2016.

The Study

MS Society of Canada-funded neurologist and Waugh Family Chair in Multiple Sclerosis Dr. Ruth Ann Marrie and colleagues conducted a survey to assess current opinion of medical assistance in dying (MAID) in people living with MS. The team surveyed respondents through the North American Research Committee on Multiple Sclerosis (NARCOMS), an active global registry, using hypothetical situations from a survey originally disseminated to people living with MS in 1999 through the National MS Society (USA)[1]. The situations were 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. Respondents were asked whether they “definitely would”, “probably would”, “probably would not” or “definitely would not” consider MAID if faced with any one of the above situations.

Findings

A total of 7,534 people responded to the survey. Approximately 80% of respondents were women, and almost all respondents were Caucasian. Approximately 7% of respondents said that they would consider MAID if faced with any of the situations provided in the survey. A large proportion of respondents said that they would consider MAID if they were experiencing unbearable pain (65%) or if they were unable to enjoy anything that made life worth living (50%).

Sociodemographic status, level of disability, depression status, pain status, religiosity and degree of social support were found to be associated with an individuals’ response of whether they would consider medical assistance in dying in each hypothetical situation. Individuals with a higher degree of social support, or engagement in religious activities were less likely to consider MAID whereas past and current depression and moderate or severe pain were found to increase the odds of considering MAID across all situations.

Further research is necessary as responders differed from non-responders with respect to age and race and the study sample does not fully represent the MS population.

Comment

Many factors influence an individuals’ consideration of treatment choices or disease management, including end of life care plans. Some of these influential factors, such as depression are more common in people living with MS than the general population. Depression in MS can be both a symptom of the disease, and can be experienced as a co-existing condition (co-morbidity). Research suggests that approximately half of all people diagnosed with MS will experience a major depressive episode during the course of their disease. Based on the survey findings, the researchers stressed the importance of diagnosing and treating depression in the MS population, including the need for social support.

The MS Society offers a variety of programs and services to help people affected by multiple sclerosis effectively manage and cope with the disease. Connect with an MS navigator by calling 1-844-859-6789 or email msnavigators@mscanada.ca.

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Reference

MARRIE RA et al. (2017) High hypothetical interest in physician-assisted death in multiple sclerosis . Neurology®. [Epub ahead of print]