Editor’s note: This story is part of a series of stories exploring New York’s controversial proposed Medical Aid in Dying Act. At stake is how the law defines what is permissible as people face heart-wrenching decisions about how to spend their final days. Are you a Staten Islander who supports or opposes medical aid in dying? Do you have a terminal illness? Email this reporter at llovallo@siadvance.com.
STATEN ISLAND, N.Y. — It’s been just over three weeks since the New York state Legislature again failed to pass the Medical Aid in Dying Act, but the sting is still fresh for advocates of the proposed legislation.
The act — which was first introduced in the state Senate in 2015 yet has failed to advance past the committee stage in each two-year-long legislative session since — would have allowed qualifying mentally competent, terminally ill patients over the age of 18 the choice of self-administering prescribed life-ending medication.
Had it passed in the state Senate and Assembly, and been signed into law by Gov. Kathy Hochul, New York would have become the 11th state to allow medical aid in dying. That designation may now go to Delaware after that state’s Legislature narrowly passed the End-of-Life Options Law on June 25, which currently awaits Gov. John Carney signature.
‘What they did is wrong’
With the 2023-24 New York legislative session now complete, lawmakers will have to wait until January 2025 to reintroduce the proposed bill that counts Staten Island state Sen. Jessica Scarcella-Spanton as its prime co-sponsor.
It’s an impossible timeline for some whose time is running short.
“I’m hurt by it not passing. I really needed it to pass,” former longtime Staten Islander Brian Moffett told the Advance/SILive.com.
Moffett, 66, was diagnosed with the incurable, hyper-progressive disease amyotrophic lateral sclerosis (ALS) almost three months ago. It has stolen a majority of his manual dexterity, arm function and mobility, and is quickly diminishing his ability to speak. His son, Jake, has since set up a GoFundMe campaign to help pay for his father’s extensive and necessary at-home care.
“I’m getting a lot worse. It should have happened,” said Moffett. “It’s wrong. What they did is wrong. I want to go already. I don’t want to be here, I’m in pain.”
Moffett, who previously told the Advance/SILive.com he wanted to be the first to use medical aid in dying in New York state, said he was tired of lawmakers “telling me what I can’t do.”
“It’s improper, and I’m the one that’s suffering. I’m getting worse. I’m hurting, always. I’m losing my voice. And I don’t want to live. Other states have it, why can’t New York?”
Despite being previously deemed too medically compromised to move, Moffett said he is once again considering leaving New York to use another state’s medical aid in dying law.
“New York is forcing me to leave. They’re forcing me.”
Knowing Moffett won’t be able to use medical aid in dying in his home state has deeply distressed Scarcella-Spanton.
“It’s incredibly disappointing every year that this doesn’t get done,” said the Staten Island senator. “My heart breaks because a lot of the advocates are people who are actively suffering from terminal illnesses, and we’re taking this choice away from them.”
She pointed to surrounding states, like New Jersey, which implemented its Medical Aid in Dying for the Terminally Ill Act in 2019, and noted New York was doing a disservice to its residents.
She wasn’t surprised by Moffett’s potential last push for relocation, and understood he likely won’t be the only New Yorker to do so.
“We’re forcing people who really want this option to move from the place they’ve called home their whole life. It’s unfair.”
‘It’s a complicated issue until it becomes your issue’
Amy and Daren Eilert, too, are frustrated with the stalled bill. The pair have advocated tirelessly for the past two years following the death of their daughter, Ayla, a Manhattan resident who was just 23 years old when she learned she had squamous cell carcinoma of the tongue. Less than seven months after her diagnosis, Ayla was dead. Throughout her excruciating battle with a relentless cancer — one that would eventually express tumors through her neck, and waste away her body until it was a skeletal 80 pounds — Ayla repeatedly begged for relief by way of medical aid in dying, according to her parents.
“Certain life experiences re-train one’s focus on what’s important. Death of one’s child can be one of them,” said Amy Eilert. She said Ayla’s death re-framed the way she could relate to the world, and the loss of her daughter had “blown a cosmic hole in my universe.”
“I’m not surprised that again [medical aid in dying] was not brought to the floor for a vote in Albany. But I am saddened that those who think that inaction is the right action don’t realize the harm they are perpetuating. And it’s unfortunate that they cannot make room for my experience, and need to have their own cosmic blow-out before their ears and hearts open. When will enough people have died screaming from the pain of disease? Apparently only when it becomes personal.”
More on New York's proposed Medical Aid in Dying Act
- N.Y. again fails to pass Medical Aid in Dying Act
- Longtime Staten Islander wants to be first person to use medical aid in dying in New York: ‘I’m suffering more than you can imagine’
- How does life-ending medication work? Here’s a look at how N.Y.’s proposed Medical Aid in Dying Act could work
- Option of medical aid in dying would be ‘comfort’ for Staten Island mom, 51, battling stage 4 pancreatic cancer
- What is medical aid in dying, and why do New Yorkers want it?
Daren Eilert pointed to a recent 2024 poll released by research group YouGov — which was commissioned by medical aid in dying proponent Death With Dignity — that showed over 70% of New Yorkers want to see the Medical Aid in Dying Act pass.
“But [lawmakers] keep saying no, it’s complicated, we don’t have enough data,” said Daren Eilert. “They just keep coming up with other things. They’re not doing their jobs, because they’re afraid. ... There’s incredible fear, grief, maybe pain and anger around death as an issue, and they avoid it. Unfortunately, that’s not your job. You stepped up to a role. You have to stand in the fire and do what’s right.”
“It’s a complicated issue until it becomes your issue,” added Amy Eilert. “And then it becomes very simple.”
Corinne Carey, senior campaign director for the New York and New Jersey chapter of Compassion & Choices, echoed the Eilerts.
According to Carey, and others, the measure failed again this session because of lawmakers’ discomfort at “even having a conversation about the bill.”
“It’s going to take some people right-sizing their discomfort,” said Carey, who has worked on Compassion & Choices’ campaign for almost a decade. “If it’s uncomfortable to talk about death and dying, imagine how uncomfortable it is to be a health care provider ... whose patient is begging to die, or the discomfort of a family member who has to sit by and watch as their loved one suffers when there’s nothing they can do. Or, God forbid, the discomfort of someone who’s dying. That is discomfort.”
Carey encouraged those interested in seeing the Medical Aid in Dying Act become law reach out to their state-level representatives to voice their support, follow Compassion & Choices on Facebook, LinkedIn and on X, and email the organization at ny@compassionandchoices.org if they would like to become involved in the campaign.
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