Compassion & Choices NY Weekly Why: What is Autonomy? (May 9)

Distributed to New York State Lawmakers via email May 9, 2022:

Last week, I asked you to consider what side you’re on with regard to New York’s Medical Aid in Dying Act. I told you that this peaceful dying option has strong support from New York voters and doctors. So I asked you to stand with the majority of New Yorkers and the broad array of groups that support giving those who are suffering while dying from a terminal illness the personal autonomy to choose this compassionate end-of-life healthcare option.  

Autonomy – which, “refers to a person's sense of self-determination, of being able to make choices regarding the direction of her or his own actions, including the freedom to pursue those choices” – has been in the news a lot over the last week. There is no question that government action (or, in the case of medical aid in dying, inaction) and judicial decisions can greatly impact the personal autonomy of every New Yorker..

What is medical aid in dying if not the ultimate expression of personal autonomy?

It is the right of dying, suffering people to make their own decisions about the care they want to receive at the end of their lives. To me – and I hope to you – autonomy includes allowing every New Yorker to have the ability to die in a way that is consistent with their faith, values, and beliefs. 

Right now, there is a fundamental divide in our country on the issue of personal autonomy. There are some who would like to force us all to live our lives and care for our bodies in a way that conforms to their beliefs. That to me is the antithesis of autonomy.

Several weeks ago, I told you about a pending court case in Massachusetts deciding whether or not their state constitution guarantees the right to medical aid in dying. Justice Serge Georges Jr. asked the government in that case what interest it has in the suffering of a dying person. “What interest does the government have in telling him, ‘We won’t let you end your life on your terms; we’re going to make you end it on ours’?” Justice Georges asked. He added: “the only interest that seems to be articulated here is, ‘We feel better if you can’t do that.’”

Let me start your Monday with a similar question: What interest does the Empire State have in perpetuating the suffering of terminally ill, dying New Yorkers? If the answer is  the state has no interest in perpetuating suffering, then it’s time for you to pass the Medical Aid in Dying Act and give autonomy to those suffering at the very end of life.

I’m sure you saw our display in the LOB last week, and I hope you had the opportunity to talk to some of the advocates – those with terminal illnesses themselves and the loved ones of those who died (many suffering) while advocating for medical aid in dying in New York.

I don’t know how you could have heard from Amy and Daren Eilert about their amazing 24-year-old daughter, Ayla, who died last month after a 11-month battle with aggressive tongue cancer, and not be moved. When the end was near, she begged every doctor she encountered for medical aid in dying to end the pain. Ayla spent her last days and weeks in agonizing pain because despite fantastic hospice and palliative doctors in one of New York City’s finest hospitals, Ayla’s pain could not be controlled. 

Now, Stacey Gibson is begging you to take up this bill and pass it. You may have seen this ad featuring Stacey that has run in some areas of the state. Stacey started asking for this option in 2015 after the awful death her husband Sid experienced. Stacey did everything she could to ease her husband’s suffering during his final days, but he died a slow, painful death nonetheless. Now, Stacey has been diagnosed with small lymphocytic lymphoma. While she is currently asymptomatic, should her situation change, she wants the option of medical aid in dying for her and her loved ones. 

It's time. Don’t end this session without passing the Medical Aid in Dying Act.

Do it for Ayla. Do it for the 21 other advocates who died over the course of this campaign. Do it so that Stacey Gibson doesn’t face the same awful end. 

Do it because you believe that every New Yorker should have the autonomy to make those truly personal decisions about their healthcare and their body.

--Corinne