24-year-old died suffering; her parents want New Yorkers to have the choice of life-ending medication (2024)

STATEN ISLAND, N.Y. — Ayla Rain Eilert was an artist.

Vibrant and warm, she had moved to New York City — first Queens, then Brooklyn, then Manhattan — from her family’s home in New Jersey after high school to pursue a career in ballet and yoga. She had found her niche, combining painting with live performance, and was driven by her creative endeavors.

“Here’s a young lady that just strove to live,” her father, Daren Eilert, told the Advance/SILive.com from his home in Dallas, Texas.

When sores began to appear on Ayla’s tongue, and she complained of pain in her throat, Daren and Ayla’s mom, Amy, encouraged Ayla from afar to seek medical treatment. Months of misdiagnoses eventually led to a biopsy, which in turn led to the unthinkable: On Sept. 23, 2021, roughly three months before her 24th birthday, Ayla was diagnosed with squamous cell carcinoma of the tongue. Six days later, Ayla underwent surgery to remove half her tongue — which was then rebuilt with part of her thigh — and 22 lymph nodes.

Less than seven months later, she 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. It was a request that couldn’t be realized: What Ayla sought is not currently legal in New York.

The Medical Aid in Dying Act, which counts Staten Island state Sen. Jessica Scarcella-Spanton as its co-prime sponsor, could change that. Also known as M.A.i.D., the legislation would allow mentally competent, terminally ill patients over the age of 18 the choice of self-administering prescribed life-ending medication.

‘THIS IS NOT A QUALITY OF LIFE’

To Daren and Amy Eilert — and their now-23-year-old son Colton, Ayla’s little brother — medical aid in dying wouldn’t have been the easy way out for Ayla; rather, it would have been the mercy she desperately sought from what her parents referred to as a type of rare, non-genetic form of cancer that affects single-digit percentages of women under 40 each year.

“She did everything possible to make herself better, including just being in massive pain so she didn’t have opioid addiction later,” said Daren, 54. “She just did everything possible to stay alive. This was a woman who totally wanted to stay alive, but once the cancer was massively through her body, she was like enough is enough.”

Despite medical aid in dying being legal just across the river in New Jersey — which Ayla’s paternal grandmother, the Rev. Gillian McAllister, helped to pass — moving Ayla would have proved nearly impossible if not detrimental to her care.

Rounds of aggressive radiation — 30 treatments in 30 business days — chemotherapy and immunotherapy left her exhausted. By March 2022, scan results showed the cancer had metastasized in 13 places, with significant masses in her nasopharynx area, neck, back, lungs, ribs and buttocks. Tumors inside her throat blocked the passage of food down her esophagus.

Doctors and nurses had promised to manage Ayla’s pain, said Amy, but the over 4,000 milligrams of morphine she received per day toward the end of her life barely made a dent in her agony; still, the medical staff were perplexed each time Ayla would inquire about medical aid in dying.

“They all asked her why she wanted it, and she was very articulate,” said Amy, 52. “‘This is not a quality of life, and I am not afraid to die. I just don’t want to be in pain anymore.’”

Hearing her daughter asking for death was hard, admitted Amy.

“As a mom, I understood what she was saying, but internally, I didn’t know if I was a supporter of medical aid in dying. [I thought], well, I don’t know if I want you to do that. I want you to be here.”

But it’s the fact that Ayla would have felt at ease and in control, said Amy, that swayed her.

She promised Ayla that she and Daren would continue to advocate on Ayla’s behalf when the inevitable happened.

“At the end of the day, do we want more than anything to have Ayla here? Yes, I would rather her walking on the planet upright, and having beautiful experiences with her,” said Amy. “[Advocacy is] one of the things Ayla told me to do, because she couldn’t [do it].”

On March 18, 2022, Ayla returned to her apartment in East Harlem to undergo home hospice care.

“Her decline was really, really rapid and she wanted to die at home,” said Amy. “They figured she was stable enough to go do that. They also figured that she probably wasn’t going to live much longer. They released her on a Wednesday, and nobody expected her to make it through the weekend.”

For 15 days, hospice professionals attempted to alleviate Ayla’s tormented suffering. On the 15th day, she was brought back to Mount Sinai, on the Upper East Side.

“The home hospice doctor said they couldn’t manage her, or her pain, anymore,” said Amy.

AYLA’S FINAL MOMENTS

Ayla was readmitted to Mount Sinai on April 1.

The last few hours of her life were torturous for her, said Daren.

“She was clawing at her neck in so much pain,” her father recounted. “Our daughter was just in massive, massive suffering pain.”

As Amy massaged Ayla’s head and the pressure points on her legs in an attempt to alleviate her aching body, Daren rushed around the hallways of the hospital for hours, advocating for more pain medication that would never arrive.

Eventually, just as the sun began to rise, Daren settled at Ayla’s bedside. He watched as light slowly illuminated the cityscape, then Central Park, which Ayla’s hospital room overlooked. Sitting next to his daughter, he interlaced his hand into hers, and looked into her eyes. A wave of calmness and love washed over him.

He told Ayla, through tears, that it was time to rest.

“You can do this,” he remembered telling his daughter. “And as soon as I said that, a tear drips out of her eye, and she starts to slow her breath rate down, and these apneas start to get longer and longer. I realized, oh my gosh, she’s actually listening to me. She’s moving through the process.”

Daren called out for Amy, who was at the foot of Ayla’s bed.

“We started to cheer her on like cheerleaders, [saying] ‘You can do this,’ because we don’t want her in pain,” said Daren. “We want her suffering to stop. Ayla’s crying, but the apneas are slowing ... until it finally just stops. And then there’s this great level of peace in the room. And we just continue to say, ‘We’re just so grateful for you.’”

On April 2, 2022, at 6:45 a.m. — following months of watching their daughter fight her cancer in agony, all the failed medical treatments and attempts at pain management, her requests for aid in dying unable to be completed — Ayla died in her hospital bed.

“I got to witness her birth at home in New Jersey,” said Daren, “and witness her death in the hospital over Central Park, which she loved, with the New York sunrise.”

FAILURE TO PASS

The Medical Aid in Dying Act was first introduced in the New York State Senate by former Staten Island Sen. Diane Savino, a Democrat — and in the Assembly by Westchester County Assemblymember Amy Paulin, also a Democrat — during the 2015-2016 legislative session. It was born from the widely publicized 2014 death of another woman in her 20s, one who had also suffered with cancer: Brittany Maynard.

Maynard, a resident of California, was 29 years old when she was diagnosed with an aggressive form of brain cancer. Three months after her initial diagnosis, doctors determined Maynard had developed glioblastoma, and predicted she had roughly six months to live. The lifelong Californian moved to Oregon to take advantage of that state’s Death with Dignity Law — a law California did not have at the time — and on Nov. 1, just 18 days shy of her 30th birthday, Maynard self-administered life-ending medication that had been prescribed by her doctor. In the 11 months between her cancer diagnosis and death, Maynard, a proponent for medical aid in dying, became well-known for her advocacy on behalf of the terminally ill.

Prior to Maynard’s death, only three U.S. states — Oregon, Washington and Vermont — had laws that permitted medical aid in dying. Since her death, California, Colorado, Hawaii, New Jersey, Maine, New Mexico and Washington, D.C., have enacted similar legislation. Montana also permits physician-assisted death per a 2009 state Supreme Court ruling, although there is no official law on the books.

Legislation introduced in eight other states over the years — Alaska, Connecticut, Arizona, Florida, Maryland, Massachusetts, Tennessee and Nevada — has failed to advance. Per a 1997 U.S. Supreme Court ruling, there is no constitutional right to aid in dying, and states may therefore prohibit it.

Since its initial proposal in New York almost 10 years ago, medical aid in dying has been re-introduced — with some adjustments — in the state Assembly and Senate in four consecutive legislative sessions. The bill has never advanced past the committee stage, which is where the most recent iteration — introduced by Manhattan Sen. Brad Hoylman-Sigal, a Democrat, in the Senate and Paulin once again in the Assembly in January 2023 — currently sits.

The lack of advancement has been frustrating for Scarcella-Spanton.

“I don’t know how you can be against it,” said the 34-year-old senator, Savino’s immediate successor. “This is not a partisan issue, it’s not a Democrat versus Republican issue. It’s a moral issue, it’s about what’s right, and giving people a choice in their end-of-life decisions. ... I know what bothers me about the pushback on this bill is that you hear people’s stories, they’re screaming in pain on the way out, and then that’s the memory they leave behind.”

For Scarcella-Spanton — a longtime advocate of medical aid in dying and self-described Catholic — providing an ailing person the choice to end their life under medical supervision is “common sense.”

“I always tell people if you don’t like this policy, if you don’t like this option, don’t use it. You don’t have to use it, but maybe your mom wants to use it, maybe your dad wants to use it, maybe somebody who’s terminally ill in your family, they would choose to use it.”

ASKING FOR M.A.I.D.

The process of procuring the prescription for life-ending medication should the legislation pass would be a rigorous one.

Among the extensive criteria, referred to as “guardrails” by Scarcella-Spanton: It must be determined a person has a medically confirmed incurable condition that would kill them within six months (a person wouldn’t qualify solely because of age or disability, and there is no list of qualifying medical conditions); the person must be deemed to have the mental capacity to make an informed decision about taking life-ending medication; and the person must be able to self-administer the medication, without aid. The bill’s language is specific to note medication must be ingested; lethal injection and lethal infusion are not allowed under the proposed law.

Only the person seeking to end their life under M.A.i.D. can request the prescription; health proxies, surrogates, family members and others cannot make the request on an individual’s behalf.

It’s only after all criteria is met that a doctor can prescribe the medication. If it’s determined at any point in the process that the individual who is requesting the medication under M.A.i.D. does not have the mental capacity to make an informed decision, has impaired judgment, or is being coerced to ask for the medication, doctors are required to refrain from writing the prescription.

Medical professionals who act in good faith in accordance with the provisions of the bill would be afforded protections from civil and criminal liability, as well as professional disciplinary action.

Health care providers who don’t wish to participate in the M.A.i.D. process can opt out without fear of retribution.

“No doctor has to prescribe [the medication],” said Corinne Carey, senior campaign director for pro-M.A.i.D. group Compassion & Choices in New York and New Jersey. “No facility has to allow it on their premises, no pharmacist has to fill a prescription. It’s an entirely voluntary process, which ensures that everyone can make their own choice in the end.”

Carey, 56, has been advocating for New York’s medical aid in dying legislation for nearly 10 years. She’s visited the state Capitol countless times in support of M.A.i.D., and watched as some of the legislation’s fiercest advocates — 26 of her peers and friends, and counting, who were diagnosed with incurable cancers and other conditions deemed terminal — died in pain.

“Excruciating pain,” said Carey, “with a tremendous amount of suffering.”

Should the bill be signed into law, it would take effect immediately. The bill is clear to distinguish that the death of a person who employed M.A.i.D. would not be deemed suicide, or constitute as suicide, assisted suicide, or homicide, among other designations. Additionally, the cause of death on death certificates would be listed as “underlying terminal illness” or “underlying terminal condition.”

There is no residency requirement included in the proposed legislation; those in surrounding states would be able to come to New York to access Medical Aid in Dying Act once passed, after all criteria is met.

It’s unclear how Scarcella-Spanton’s political peers from Staten Island would vote for the legislation in Albany, and whether Gov. Kathy Hochul would actually sign the bill should it come across her desk.

Mid-Island Assemblymember Sam Pirozzolo, a Republican, admitted to the Advance/SILive.com he was “torn” on whether to support medical aid in dying in New York.

“It’s a complicated subject,” said Pirozzolo. “... It’s something that I think about fairly often, and I haven’t come to a conclusion.”

Requests for comment submitted to Democrats Hochul and Assemblymember Charles Fall, and state Sen. Andrew Lanza, Assemblymember Mike Reilly, and Assemblymember Michael Tannousis, all Republicans, were not returned.

OPPOSITION TO THE BILL

According to a recent 2024 poll released by research group YouGov — which was commissioned by M.A.i.D. proponent Death With Dignity — 72% to 73% of New Yorkers statewide support medical aid in dying. A Sienna College poll from November 2023 put New Yorkers’ support closer to 60%.

And while the bill has gained the endorsem*nts of several large groups, such as the New York State Bar Association, the New York State Public Health Association, and the New York Civil Liberties Union, it also has its detractors: Namely, some religious institutions, right-to-life groups and disabilities rights groups.

For as many proponents that show up in Albany to lobby for the legislation, there are just as many hard-nosed critics.

A memorandum of opposition released by the New York State Catholic Conference in February reaffirmed the church’s stance against M.A.i.D., and claimed those “most at risk of being taken advantage of and discarded by the health system will be endangered further” should the legislation pass.

The New York Association on Independent Living, too, has repeatedly voiced its opposition. The nonprofit, which promotes the independent living and rights of New Yorkers with disabilities, is concerned about the possibility for coercion and abuse of the law.

Scarcella-Spanton hopes to allay their concerns, and the concerns of other organizations staunchly opposed to M.A.i.D.

“The disability community is always at front and center in my mind,” she said. “I want to hear what their concerns are. I want them to know that this will not be a slippery slope. The bill is written to make sure that people who have nefarious intentions would never be able to utilize this to harm somebody.

“And I don’t have any disrespect towards the religious institutions for their position on this,” she continued, “but ... for me personally, as a Catholic, I think that having this as an option will provide people with peace.”

Opposition groups aside, Scarcella-Spanton believes there is enough support for the bill to pass this year should it exit the committee stage and come to the floor for a vote.

“We can’t be scared to pass it,” said the senator. “I think the people who are against it are never going to be for it, and that’s OK. But I invite [those against the bill] to do some research ... It’s just simply a choice in giving people peace and dignity in their death.”

The 2023-2024 legislative session ends in June, and Election Day in November threatens to wipe out some of the legislation’s current support, according to Scarcella-Spanton. What will happen if the bill fails to pass before then?

“We’ll keep trying,” she said.