I recently testified at the Minnesota House Health and Human Services Policy Committee’s public hearing on the End-of-Life Options Act (HF 2152) and was heartened to see the support displayed by over 100 Minnesotans for this vital legislation that would authorize medical aid in dying in our state.
This legislation is especially important to me. I have been living with ALS for over 20 years now. Also known as Lou Gehrig’s disease, ALS is a fatal condition of the nervous system. The signals my brain sends through the nerves that control movement are less frequently getting through to my muscles. I can no longer speak intelligibly, walk, dress, or use the bathroom without assistance.
I know that each subsequent loss of function is a step closer to death. I’ve been lucky to live so long with this disabling disease. I’ve held seven newborn grandchildren in my arms and watched them grow into distinct little humans. Three have graduated high school and are forging their way in the adult world. Most people with ALS are not so fortunate.
As a person living with a disability, I’ve gained great respect for the pioneers who fought for the Americans with Disabilities Act. It was their sacrifice and hard work that has given me access to so many support services that have enabled me to live a full life. But, unlike others living with a disability, mine is fatal. While I am not in denial of this fact, I am determined to live life to the fullest as long as I can.
Most people with ALS suffer an agonizing death as one organ after another shuts down. Eventually, I will lose my ability to eat without being fed through a tube or to breathe without being attached to a machine. It is likely I will slowly suffocate from my body’s inability to suction the fluid out of my lungs. Throughout all of this, my thinking will remain sharp and my senses intact.
Before I reach this stage, I’d like to have the option for a peaceful, painless death. Data from Oregon shows that ALS is the second most common diagnosis of people who utilize the state’s Death with Dignity law (after cancer). I would like to have the same option that people in 10 other U.S. jurisdictions now have, which represents more than one out of five Americans (22%).
A large majority of Minnesotans support this compassionate, end-of-life option. In fact, more than two-thirds of Minnesotans support medical aid in dying. Support for the bill is bipartisan and diverse, spanning every demographic group measured.
The question then becomes: Who is responsible for deciding how much pain and suffering a person dying of a terminal illness should endure? The dying person, in consultation with doctors, loved ones and spiritual teachers, or our government? We terminally ill Minnesotans are entitled to the autonomy to die peacefully on our own terms, with the help of our doctor, if and when we are ready, with our loved ones by our side.
Fears of abuse of medical aid in dying come from a very real emotional place. But the fears are unfounded. Disability Rights Oregon (DRO), the nonprofit charged with protecting the civil rights of the disabled community in the state of Oregon, states that it has not received even one complaint related to the Oregon Death with Dignity Act in the 20 years it has been in effect.
The movement to authorize medical aid in dying is based on the same principles that underlie the disability rights movement: respect, dignity and autonomy. Only I can determine the quality of my life. Only I can define what dignity means to me.
I am urging our state legislators to pass this legislation in the 2020 session and please let me and other terminally ill Minnesotans have the peace of mind this end-of-life option provides.
Bobbi Jacobsen lives in Richfield.