(The author has lived in Delaware for 33 years and last month penned this “letter to the editor” that was published in one of USA Today’s publications. His background is included in his moving and well-researched plea for Medical Aid in Dying. – Jay Niver, editor)
I am a retired computer analyst who has lived with spinocerebellar ataxia (SCA), a rare spinal and brain degenerative disorder, for 40 years. It impairs my speech, balance, fine motor skills, and coordination. I need a powered wheelchair and a nursing assistant.
I live a meaningful and fulfilling life. I swim regularly if the pool has an Americans with Disability Act pool lift, and I have competed in the Senior Olympics. Right now, my situation is not terminal, but there is no known effective treatment or cure for spinocerebellar degenerative disorder, and it is often fatal. The end of my life could involve great suffering.
If my condition becomes terminal, I want the option of Medical Aid in Dying (MAiD) to gently end my suffering, if it becomes intolerable. A bill to allow MAiD in Delaware (the Ron Silverio/Heather Block Delaware End of Life Options Act — HB 140) is now before the state legislature. It would allow terminally ill adults who satisfy all the requirements in the legislation to have the option to get prescription medication from a doctor they could take to pass peacefully. People are allowed to accept or reject medical treatments throughout the spectrum of life. Medical Aid in Dying is nothing more than an extension of these existing options. I want the right to make my own decision.
For those facing a terminal diagnosis, a peaceful transition should be possible. People should not be forced to suffer a slow and painful death. I believe a person who has a terminal illness and has suffered has a right to end their suffering, if they so choose. It should be my right to access MAiD when my time comes. Disability-rights advocates and people with different religious beliefs who oppose this legislation speak for themselves. They don’t speak for me.
They don’t have the right to keep me from using Medical Aid in Dying because they think they know what’s best for me. It should be my decision and my decision alone to use this option. Anyone who thinks they should be the one who determines how I die is doing me a great injustice.
MAiD is a legal option for mentally capable, terminally ill adults in nearby Washington, D.C., and 10 states, including our neighbors in New Jersey, but not in Delaware. I do not want to face an unnecessarily difficult death as a result of living here. The Delaware End of Life Options Act is modeled after the time-tested 1994 Oregon Death with Dignity Act, so it has the same core eligibility and safeguards to prevent misuse.
In fact, a Journal of Medical Ethics study concluded: “Rates of assisted dying in Oregon … showed no evidence of heightened risk for the elderly, women, the uninsured … people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations.”
In addition, a 2020 GBAO Strategies poll showed Delaware voters support medical aid in dying by more than a nearly 4-1 margin (72% vs. 20%), including a strong majority spanning the geographic, political and racial spectrum. While this poll does not measure support among people with disabilities, polls in other Atlantic coast states of Connecticut, Massachusetts and neighboring New Jersey show that between 62% and 75% of voters with disabilities support medical aid in dying.
The decision to utilize medical aid in dying is a highly personal matter. Terminally ill people – whether they have a disability or not – who want to be able to choose how they spend their final days should be allowed to do so.
Delaware lawmakers can enact medical aid-in-dying legislation to ensure that mentally capable terminally ill adults with six months or less to live have the option to die peacefully.
The time to pass the Ron Silverio/Heather Block Delaware End of Life Options Act is now. I thank the Delaware House Health & Human Development Committee for advancing this compassionate legislation to the House floor in late January. Now I implore Delaware lawmakers in both houses to pass this bill.
Editor’s note: The author has drafted a book that includes these additional statements he shared with FEN.
- It might sound strange to hear someone say death is a joy, but in reality, it is a relief to end what has become endless suffering … It might be better to say Medical Aid in Dying is a realistic way of ending the continuous pain and suffering caused by a disease.
- Spending 40 years of sleepless nights, needing people to help dress you, and peeing on yourself when there’s no one around to help you are just a small sample of reasons that will make you think of suicide.
- Death should be seen as a possible peaceful end of life, not as a prolonged period of suffering. I believe that a person who has a terminal illness and who has suffered has a right to end their suffering if they choose. It should be my right to access Medical Aid In Dying when my time comes.
There is another outspoken MAiD advocate among people with disabilities. Rachelle Chapman is a young quadriplegic woman who lives outside of Raleigh, N.C., and recently made a statement for Dying Right North Carolina, the group that has for four consecutive legislative sessions tabled a bill to allow aid in dying in the Tar Heel state. Here is her view on the right to die, and who should (or shouldn’t) speak for her.
David Mills makes an eloquent plea for MAiD. Although he supports it for the terminally ill he does allude to the suffering caused by a disease like his and the possible desire to end it before reaching the six month prognosis. Yes, it would be great if Delaware — and the other 40 states passed a replica of the 27 year old Oregon law but most countries that have MAiD also recognize the right of
non-terminal, suffering people who would want a gentle end before that time. And most would want a method that does not require SELF-administration.
Hear Dr. Stefanie Green discuss the law in Canada this Sunday, March 20, 1:30 PDT. Register at hemlock societysandiego.org to understand how non-terminal people can achieve a peaceful death EVEN when they no longer have capacity.
Why are we not so civilized??
Right to die is humane.
SHOULD ‘DISABLED’ PATIENTS
HAVE THE RIGHT
TO SHORTEN THE PROCESS OF DYING?
Persons with any limitations of mind or body should have the same rights as anyone else. And if their thinking itself is questionable, then their proxies should have full powers to decide for them.
One useful safeguard-procedure might be adding a review by some individual or committee of persons with the same limitation of abilities. Excluding people with low thinking power, if OTHER PEOPLE with unquestionable mental capacities agree with the person
who has some identifiable limitations that it would be better to accept death NOW than wait for death LATER, then they can support that decision to shorten the process of dying by the ‘disabled’ person …
I totally understood and appreciated the irony and frustration behind David’s comment, “They act like disabilities people’s rights are being abused when they are taking our rights away.”, as he wrote me recently. Self-appointed “protectors” of people with disabilities have no right to speak for them nor decide for them.
1) Why do you support Medical Aid in Dying?
I believe that a terminally ill or chronically ill adult who has suffered for a long time, has a ‘Right’ to request assistance to bring an end to their suffering. I think death should be seen as a positive and peaceful end of their life, rather than just an unwanted prolonged period of suffering. I think that terminally ill adults and chronically ill adults with decision-making capacity should have the right to die peacefully on their own terms and not be forced into prolonged suffering in a hospital or nursing home.
2) Has the healthcare system provided enough support for you as a disabled person?”
For many years, I believed that Medicaid was for poor people and that the system wanted you to die in a hospital or nursing home. Later I learned the people at Medicaid really wanted people to die at home, which I also want for myself. Many times, over the years I have been left alone in the hospital which was a sad and depressing experience. Hospitals and nursing homes have their rules and visiting hours which may prevent visits from friends and family in our final days. You need only look at how COVID-19 prevented family and friends from being with their loved ones during their final days.
3) What does bodily autonomy mean to you?
“The phrase bodily autonomy should be defined because many people have never heard of this odd phrase. Bodily autonomy or body autonomy is the concept that an individual has the sole right to control his or her body and what happens to it. Therefore, my body is mine! Everyone believes that a patient has the right to accept or reject treatment and make their own health care decisions. Why else would we have laws like the Advance Health Care Directive or Living Will? People can choose to take or not take medications, vaccines, cancer drugs and radiation, and a host of other treatments. Medical Aid in Dying is nothing more than a logical extension of these existing laws. Anyone who thinks they should be the one who determines what treatments I get or don’t get or how I die is doing me a great injustice and violating my rights.”