Medical aid in dying has become a personal issue as his disability progresses

By Tom Albin For nine years, Minnesotans have pleaded with our lawmakers to allow terminally ill adults the option of […]

Tom Albin and family taking a picture in front of a lake

By Tom Albin

For nine years, Minnesotans have pleaded with our lawmakers to allow terminally ill adults the option of medical aid in dying. Last year, this topic became personal for me, so I joined the fight.  For more than two years I’ve been living with ALS, a  fatal disease that causes progressive muscle weakness. ALS attacks the nerves in my brain and spinal cord causing severe weakness. I have the “bulbar” form which first affects my swallowing, speech and breathing, then my limbs. 

My voice is strained and hoarse, and I can’t speak fast or loudly anymore. If I’m at a party, I’m not able to engage in the conversation as much as I want. I love to joke around, so that’s tough for me. The disconnect in speaking is hard and it’s going to get worse. Eating, too, is difficult and painful, and choking is common for me. 

Nevertheless, I’m very much enjoying life. I have ice cream every week. I watch and still play hockey, I love listening to music and taking walks in nature. I meet up with friends often for a meal, coffee, or a beer. I’ve been very blessed that my friends have stepped up so that I don’t feel alone, even though ALS is commonly a very isolating disease.  I also know what lies ahead. Eventually, I will become weaker and weaker, become unable to eat without a feeding tube and unable to breathe on my own (I already have one but can also eat real food when I have enough energy). I don’t know how rapidly I will decline but when that begins to happen, I want to be able to die on my terms, in as little pain as possible.  I’ve been following the End-of-Life Options Act since I received my diagnosis, attending nearly every legislative hearing. What I’ve learned is that the bill authors have responded to feedback and made improvements that protect vulnerable individuals. 

For example, the bill emphasizes that disability or advanced age alone do not qualify a person for the option of medical aid in dying. The individual must have a terminal diagnosis with a six month or less prognosis, the accepted standard for hospice care. The individual must also be capable of giving informed consent for their own healthcare which eliminates people with developmental or cognitive limitations like dementia. 

The bill requires that oral and written requests be made only by the terminally ill person themself and in compliance with ADA guidelines. Requests for medical aid in dying may not be made by a surrogate decision-maker, including a guardian, conservator or other healthcare proxy. Or by a family member. The bill prohibits insurers, including public and private insurers, from denying or altering healthcare benefits or services just because medical aid in dying is a legal option. It also creates strong penalties for coercion, which is an attempt to force or prevent someone from choosing medical aid in dying. 

I am living with a disability which is going to progress. Until then, I’m living my life fully and benefitting from the many protections disability rights advocates have fought for. But I am capable of making my own decisions about how I treat my disease. The time will come when my death is imminent; that’s when I will want the option to leave this life on my own terms. 

We have a daughter who lives in Washington, where medical aid in dying is available, but my wife and I don’t want to leave Minnesota. It’s been our home for 35 years. It’s where we’ve built our community and social support, and it’s where my medical team is. It doesn’t make sense to have to leave my home just to have some say in the last stretch of my life. 

Minnesota lawmakers, rightly, have made bodily autonomy a priority by protecting reproductive and gender-affirming medical care. The right to make decisions about our own bodies should apply at the end of life, too.  Tom Albin is a resident of Minneapolis.

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