My daughter needed Medical Aid in Dying. It wasn’t available.
Dear Senate Majority Leader Stewart-Cousins and Speaker Heastie,
I am told that 5 days is a long time in the legislature. I don’t really know what that means. Is it that 5 days will drag by slowly because everyone is looking forward to break? Or is it that a lot can happen in the legislature in 5 days? I do hope it is the latter.
But, I also know how long 5 days can be when dealing with unrelenting and untreatable – intractable pain. I know the feelings of helplessness that arise when a loved one sobs in agony while apnea-ing their last breaths. I know the sense of alarm that comes when a body that can no longer swallow water from a swab that was intended to keep a dry-mouth hydrated and that body reacts with giant fits of gagging, and the pain that’s been increased from coughing that water out and tearing open cancer sores that line the neck. I know that someone can walk in grace through all that because I watched my 24-year-old daughter do it.
And she HAD to do it. Medical Aid in Dying was not there for her. She knew she was dying. She wasn’t afraid of that. She didn’t want to endure more pain. MORE PAIN. Meaning she already experienced an unbelievable amount through treatment. Surgery. Chemo-Radiation. Chemicals and Burns at the same time. In an attempt to HEAL her. A hellish three months.
The healing didn’t work.
Why did she have to do MORE PAIN? SHE WAS DYING! WHY COULDN’T SHE GO PEACEFULLY? She wanted to. She asked her doctors and everyone who would listen for the option of medical aid in dying. Repeatedly.
But the Medical Aid in Dying Act wasn’t passed in 2021, so it wasn’t available to her on April 2, 2022.
I hoped to talk to you on April 2, 2023– the anniversary of her death — but you were still talking about the budget. Since then, more people have died horribly painful deaths, leaving trauma in their wake.
Our hospice nurses told us that dying is peaceful. Disease is painful. Our hospice and palliative care people were blessings. Yet even with these blessings cancer outpaced our blessings exponentially. And we are not the only story to unfold this way. If Ayla were the only one, the single outlier, then I would understand the reluctance to help or change this situation. But she is NOT the only one. Though relatively rare, about 1% of the time, WE CAN’T HELP PEOPLE’S PAIN when they are dying. They need the gentle option of medical aid in dying to do so.
“When pain is high, the dying process can’t be settled into.”
This is not a reality I wish for you to watch.
Please, you cannot help Ayla. But you can bring s2445/a995a, the Medical Aid in Dying Act to the floor for a vote. The 1%ers in your district, 1% of New York, will find relief just knowing the option is there; and if they need it, they will know that you gave them the power to avoid needless suffering at the end of their lives.