Each person living with multiple sclerosis (MS) experiences a different journey. Life with MS can sometimes be difficult, especially when the person faces depression, anxiety, disability and pain, which all impact their quality of life. So, when MS Society of Canada-funded researcher and MS neurologist Dr. Ruth Ann Marrie from the University of Manitoba and her colleagues decided to reach out to people living with MS to hear their views on physician-assisted death (PAD) (or medical assistance in dying)- it brought about some interesting data that warrants further understanding of the significant life challenges in MS that need to be addressed.
Who was surveyed and what did they have to say?
More than 7,500 people responded to a survey about physician-assisted death, which Dr. Marrie and colleagues administered through an active global MS registry called the North American Research Committee on Multiple Sclerosis (NARCOMS). The survey found 7% of responders would consider PAD in all of the following 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. It also found that 20% of responders would not consider PAD in any of the situations.
The situation in which most of the responders would consider PAD is if they were to experience unbearable pain (65%), and nearly 50% of the surveyed individuals would probably or definitely consider it if they were unable to enjoy anything in life that would make life worth living. Other things discussed in the survey which contributed to consideration of PAD include financial burden to caregivers, inability to be happy and feelings of extreme emotional distress. In each of the situations except for unbearable pain, over one-third of responders indicated that they would probably or definitely consider PAD.
One thing to keep in mind is that certain groups of people living MS may not be captured in this snapshot. In fact, there was a difference of age and race between the people that answered compared to people that did not answer the survey.
There were certain factors which influenced the responders’ thoughts around PAD- disability and depression being two of them. Interestingly, depression was also found to be linked with thoughts of PAD in people living with AIDS, which research shows can be reduced if the depression is effectively treated. Recently, MS Society-funded researcher and neuropsychiatrist Dr. Anthony Feinstein from Sunnybrook Research Institute published an article in Multiple Sclerosis Journal on the link between leisure activities and depression. He found that depression in people living with MS leads to reduced participation in leisure activities such as reading and writing. The high prevalence of depression in people with MS and its impact on quality of life is an important piece that needs to be further studied, especially in light of the findings from Dr. Marrie’s PAD survey. Additionally, the importance of social support for people with MS is highlighted in the survey, as higher levels of social support and engagement in religious activities such as attending church, were associated with a lower likelihood of considering PAD.
In 2015 the Supreme Court of Canada ruled that a competent adult with a “grievous and irremediable medical condition” has the right to end their life. However, we would be remiss if we did not state that MS is a complex disease and it is important to figure out the factors that influence health and long term care decisions. This survey stresses the importance of providing adequate support for people living with MS, in addition to addressing the high rate of depression and developing ways to adequately diagnose and treat depression early on in people with MS.
The MS Society provides many services that can help people get cope and live with the disease. If you want to find out more about MS and how to cope with it or if you have any question regarding the disease- connect with an MS navigator by calling 1-844-859-6789 or emailing them at firstname.lastname@example.org.
Source: Marrie RA et al. (2017) High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. [Epub ahead of print]