FROM OUR COMMUNITY: She asks disability community to consider the End-Of-Life Options Act

FROM OUR COMMUNITY: She asks disability community to consider the End-Of-Life Options Act

I testified before the Minnesota House Health & Human Services Policy Committee last month in strong support for the End-of-Life Options Act, a bill that would authorize medical aid in dying for terminally ill adults of sound mind. It would allow individuals with fewer than six months to live to obtain a medication they can self-ingest if their suffering becomes intolerable. I’ve been living with ovarian cancer for four years and my health is on the decline. I’ve undergone two major surgeries, 12 rounds of chemotherapy and have participated in clinical trials. Few women with ovarian cancer live beyond five years. I am currently in year four. 

As I look to my future, the natural progression of this disease is grim. I’ve watched women in my cancer support group die, just like the stats say, so I know what’s in store. I will likely have intestinal blockages and fistulas that lead to fecal drainage. I may have sepsis. Fluid will build up in my abdomen and lungs which will cause chest pain and shortness of breath. The cancer-ridden fluid will have to be removed through a large-bore needle inserted into my abdomen(again). As the cancer spreads it can go to my vital organs, bones and brain, my pain will increase, and I’ll become weaker. 

I describe the gruesome details to explain why this legislation is so important to me. I want to live for as long as I possibly can. I want the medical care that can ease my pain and allow me to be in relationship with my children, family and friends. But, when the time comes, I also want to have a good death. While I am still able to speak for myself, I want to be able say good-bye and die peacefully rather than deteriorate to the degree that doctors sedate me to unconsciousness while my family watches me slowly dwindle. Only when you’ve truly faced your own mortality or seen a loved one die can you truly understand the importance of this bill. 

I’m sharing this with the Access Press community because so much of the opposition to the End-of- Life Option Act expressed at the hearing came from members of the disability community. I heard two major concerns that I’d like to address in the spirit of open communication. 

One speaker took great offense at use of the term “death with dignity” and I agree. There is more than one way to live or die with dignity. As terminally ill people approach the end of life, they become unable to care for themselves and are dependent on others. But, unlike people living with disabilities, they are dying. Each loss of function is a step closer to death and accompanied by suffering associated with the disease. I want the option to go out on my own terms when my suffering becomes unbearable. Only I can decide when I’ve had enough or what dignity means to me. That’s why I support this law. It’s all about autonomy and self-determination, and self-determination is a central tenet of the work I’ve done my entire life as a social worker. 

The other issue raised at the hearing was a concern about abuse. Some worried that insurance companies would deny care, especially to high-cost patients like those living with disabilities and recommend medical aid in dying instead. Or that doctors, families or others would use medical aid in dying as a method to end the life of vulnerable patients like those with disabilities. I know how hard the community has worked for fair and equal access to medical care and public services. But after 20 years of experience with medical aid in dying, Disability Rights Oregon (DRO) has declared that medical aid in dying poses no threat to people with disabilities. Not only has DRO received no complaints about abuse of the state’s Death with Dignity law, but, instead, they have received complaints that the medical-aid-in-dying law actually discriminates against the disabled by requiring self-ingestion. 

In the words of Stephen Hawking, “To keep someone alive against their wishes is the ultimate indignity.” I appreciate the opportunity to contribute to the conversation. 

Marianne Turnbull is a St. Paul resident.