Opinion: Medical Aid in Dying would have spared my father’s suffering

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By PAT WILCZYNSKI

Published: 04-25-2024 6:00 AM

Pat Wilczynski is a retired psychotherapist living in Concord.

The NH End of Life Options Act, HB 1283, would have saved my father. Not from dying, but from the miserable and heartbreaking way he died.

His name was Ed Wilczynski. He was over six feet tall, strong, a high school football player, a saxophone player, an offset cameraman for the Lawrence Eagle Tribune, and a father of six kids. At age 47 he was diagnosed with ALS, commonly known as Lou Gehrig’s disease.

It was about as devastating a diagnosis as someone like him could get: a fatal motor neuron disease characterized by progressive degeneration of nerve cells in the spinal cord and brain. ALS leads to total loss of ability to function and affects speech and the ability to swallow as well.

Dad was not a physicist like Stephen Hawking, who also had ALS, but who could carry on a full intellectual life, giving lectures and writing books despite his disease. Dad worked with his hands.

In between working full-time and any overtime he could get, he built a house from the ground up for all of us to live in. If our Jeep broke down, he rolled himself under it and stayed there until he figured out how to fix it. This disease was torture for him. Yes, torture.

At one point he “fell” down a flight of stairs, crashing onto the cement floor below. While I was visiting him in the hospital he said, “Next time I’ll be sure to put a bull’s eye on my head.”

When I asked my brother Mike if he thought Dad was trying to kill himself, he confided that in fact our father had asked him to roll him into the garage, start the car, and place him near the exhaust. At that time my Dad’s only option was to endure the daily torment brought on by his disease or to try to kill himself in these inhumane and ultimately ineffective ways.

No longer able to speak or swallow, gasping and choking, he died a brutal and terrifying death. Didn’t he, and everyone else in his position, deserve better, more humane options? How can it be that someone with a terminal illness is left to suffer so horrifically?

Some opponents of HB 1283 argue that we just need more hospice and better palliative care. I absolutely agree that we need access to more well-trained palliative care doctors and nurses who can make a tremendous difference for some dying patients. However, that approach does not work for everyone. All the palliative care in the world wouldn’t have helped someone in my Dad’s situation. Some people living with disabilities and those advocating for them oppose the bill because they fear vulnerable people may be forced into medical aid in dying.

As a currently able-bodied person, I know it’s easy to forget how difficult our healthcare system and indeed our entire culture can be for people living with disabilities, who have to fight for the respect and resources they deserve. But HB 1283 has proven safeguards in place to ensure no one is harmed. In addition, polling by the UNH Survey Center shows that 75 percent of New Hampshire people living with disabilities want the option for themselves.

While there is no evidence that having end-of-life options would cause suffering to this group or others, we do know with certainty that not having the options provided by the passage of this bill will cause tremendous suffering to those who are dying and wish to end their life humanely.

Other opponents of HB 1283 are concerned that in passing this Medical Aid in Dying bill we may be contributing to the heartbreaking rate of suicide. As a clinician who has practiced psychotherapy for over 50 years, I find it shameful that we do not have better and more immediately accessible mental health resources available to those suffering from mental illness.

We need to commit to doing something about that. But we must not confuse these two issues. Studies have yet to confirm a direct correlation between allowing medical aid in dying and an increase or a decrease in the rate of suicides.

People who choose to end their lives through medical aid in dying typically have cancer and their average age is 74. When they become afflicted with a terminal disease, most of them want desperately to live. It is only after exhausting all medical resources and accepting that there is no hope for them that they make the decision, in consultation with their medical team and loved ones, their clergy or counselors, to end their pain and suffering.

By passing HB 1283, we give options to dying patients whose suffering is simply unbearable. No solution we come up with is perfect, but we must have the courage to support our loved ones at their journey’s end.

HB 1283, the NH End of Life Options Act, will be voted on by the Senate very soon. If you support this bill, knowing that someday it may help a loved one or yourself, please contact your NH State Senator as soon as possible. Ask them to summon the compassion and courage to vote ‘yes’ for Medical Aid in Dying.