Retired Professor With Multiple System Atrophy Hopes for a Medically Assisted Death

According to a story from Southwest Journal, retired professor Karen Warren was first diagnosed in 2015 with multiple system atrophy, a lethal neurodegenerative disorder. The disease carries an unpleasant group of symptoms that see patients lose control of their bodies and minds over several years before ultimately dying. With this ominous future in mind, Karen hopes that, when the time comes, she will be able to receive medical assistance that will allow her to die with dignity.

About Multiple System Atrophy

Multiple system atrophy, which is also called Shy-Drager syndrome, is a neurodegenerative genetic disorder. It is most characterized by progressive loss of movement ability and voluntary muscle control. Unfortunately, little is known about what causes multiple system atrophy, and researchers have yet to identify any clear risk factors. Men are more likely to be affected. The symptoms are similar to Parkinson’s disease, but drugs that can control Parkinson’s symptoms have little effect. These symptoms include slowed movements, muscle stiffness, tremors, ataxia, and postural instability. Other symptoms including impotence, vocal palsy, urinary tract issues, dry mouth, and reduced ability to sweat may also appear. Treatment is mostly supportive; physical therapy, rehabilitation, and speech therapy are useful for maintaining movement and other capabilities. There is some disparity in the rate of disease progression, but most patients only survive between 6-10 years after their diagnosis. To learn more about multiple system atrophy, click here.

Karen’s Story

When she was a philosophy professor, Karen used to discuss with her students the moral implications of consensual euthanasia and suicide. She used to participate in an unbiased manner, merely provoking thoughtful debate regardless of her own beliefs. However, the time for debate is over for Karen. She knows that she wants to choose her death.

Part of her decision comes from her experience at a multiple system atrophy support group where she met fellow patient Patricia Sturcken. Patricia had progressed far more than Karen had, and her condition was grim. She was stuck in a wheelchair and could no longer breathe, eat, or urinate on her own. She couldn’t speak; she could barely move. Patricia was plagued by painful spasms and cramps thanks to nerve damage. 

While Karen has no desire to die right now, as she still is able to live relatively normally, she knows that she doesn’t want to survive long enough to be in such as state. There is considerable debate about whether “right to die” laws should be the law of the land, but for Karen, the choice is clear.

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