After 10 years of debate on New York Medical Aid in Dying Act, Albany must pass it
In August 2023, I was working in Nepal and noticed some stiffness and spasticity in my left leg. I didn’t think too much about it. But it didn’t go away.
Upon my return, I saw my internist, who referred me to a neurologist. Within a month, after an extensive workup, I was told that I had ALS, or Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. I’m a doctor and earlier in my career had co-founded a program to care for homebound patients with serious illnesses. I was all too aware of the typical trajectory of ALS and what was likely in store for me.
While there has been an explosion of research into the causes of, and treatments for, ALS, it remains a fatal neurodegenerative disease. There is a good chance that, over time, it will paralyze me, and ultimately cause me to lose my ability to speak, to eat and to breathe.
I’ve cared for enough patients with ALS in the late stages to know that to live with this devastating disease, I would need to be confident that I will have control over my death should my suffering become unbearable.
New Yorkers include a myriad of ethnic, racial and religious groups, party affiliations, those with and without disabilities and of course people of all ages. It is hard to imagine there is an issue on which the majority of people in all these groups agree. Yet poll after poll has shown that there is exactly this level of agreement on providing terminally ill New Yorkers with access to medical aid In dying as an option to peacefully end unbearable suffering.
Medical aid in dying is authorized in 10 states and Washington, D.C. These laws allow terminally ill adults who are within 6 months of death to request a prescription for aid-in-dying medications. The laws are similar in all states and include a host of safeguards to ensure that only those who have decisional capacity, are truly terminally ill, and able to self-administer the medications, can avail themselves of this option.
In these states, not one more person has died as a result of these laws, but many fewer have suffered.
Because of those safeguards, in the over 25 years that these laws have been on the books, there hasn’t been even a single documented case of misuse or abuse. Further, there haven’t been any changes to core eligibility requirements of the laws that would include additional patient populations such as those with disabilities who are not terminally ill, or those whose sole cause of suffering is related to mental illness.
In short, the American experience with medical aid in dying is exceptionally and durably consistent with the wishes of the electorate.
Medical aid in dying is, sadly, not yet legal in New York. New Yorkers who are financially well off and have the right connections, like myself, are able to make arrangements to travel to other states like Maine, New Jersey and Vermont to avail themselves of this option. But for those who are poor and/or marginalized, that simply isn’t an option. That strikes me as profoundly inequitable.
Why then, is medical aid in dying not legal in New York? Legislation has been introduced here since 2015, but never makes it to the floor of the Senate and Assembly for a vote, despite the approval of the majority of New Yorkers across all demographic groups and the endorsement of 50+ organizations. They include the New York Bar Association, the Medical Society of the State of New York, the League of Women Voters, the Latino Commission on AIDS and many, many others.
Opinion: New Yorkers could pay even more at the grocery store if pro-lawsuit bill becomes law
The legislation has been amended numerous times to address the concerns of lawmakers and other stakeholders and it has 86 co-sponsors.
Public dialogue and debate amongst the legislators followed by a vote is the right course of action. To date, the Senate and Assembly leaders, Andrea Stewart-Cousins and Carl Heastie, have refused to allow a debate and vote on the legislation.
It is long past time that the legislative leaders allow a floor debate and vote on the Medical Aid In Dying Act before the end of the current legislative session on June 6. Terminally ill New Yorkers deserve to have access to medical aid in dying. Likewise, whether the law is voted up or down, after 10 years of debate, all New Yorkers deserve to know where their own legislators stand on this issue.
Jeremy Boal, M.D., is an internist and geriatrician. In late 2023, he stepped down from his role as Chief Clinical Officer for the Mount Sinai Health System to focus on his health after receiving a diagnosis of ALS.
This article originally appeared on Rockland/Westchester Journal News: New York's Medical Aid in Dying Act must pass
