Ayla Rain Eilert’s parents describe the final moments of their daughter’s life as ‘beautiful’.
On the morning of April 2, 2022, just seven months after she was diagnosed with aggressive cancer which left her in near-constant agony, Ayla’s suffering had ended.
A beautiful sunrise flooded her room at Mount Sinai hospital in New York City and Ayla, 24, passed away with her parents and younger brother at her bedside.
The moment brought peace at last after months of excruciating pain for Ayla – pain which her parents, Daren and Amy, say could have been avoided if she had access to Medical Aid in Dying.
The practice allows certain terminally-ill patients to administer drugs to end their own life. But it is currently illegal in New York, something campaigners say leads many terminally ill patients like Ayla to suffer needlessly before death.
Ayla Rain Eilert, a dancer and artist, died on April 2, 2022, just seven months after she was diagnosed with cancer which left her in agonizing pain that doctors were unable to relieve
Ayla’s parents, Daren and Amy, said access Medical Aid in Dying would have stopped their daughter experiencing the agonizing pain she suffered before her death
Ayla was diagnosed with squamous cell carcinoma in September 2021 and despite extensive treatment, the cancer spread throughout her body
In a deeply personal and emotional interview with DailyMail.com, Daren and Amy explained how they are now using their heartbreaking story to campaign for MAiD in New York.
They are also keeping a promise made to their dying daughter, who repeatedly asked for MAiD, that they would work to ensure other terminally ill patients don’t have to go through what she did.
AYLA’S STORY
Ayla was born in her family’s home state of New Jersey and moved to New York City after high school to pursue her passion for art and dancing.
She regularly performed and exhibited her artwork – part of a blossoming career which continued right up to her cancer diagnosis on September 23, 2021.
Several months earlier, in around May, a sore had appeared on Ayla’s tongue and she felt pain in her throat. She sought medical help and, in the two months which followed, was misdiagnosed by two separate doctors.
The sores didn’t go away and a third doctor recommended a biopsy, which was carried out on September 16. A week later, Ayla and her family received the crushing news that she had squamous cell carcinoma.
The condition is a type of skin cancer which is not usually life-threatening, but its location on Ayla’s tongue made it much more serious.
As soon as the diagnosis was made, her medical team at Mount Sinai Hospital in Manhattan developed an urgent treatment plan which involved surgery just six days later to remove a quarter of her tongue.
The extent of the cancer meant that surgeons had to remove half of Ayla’s tongue in a procedure which took 11 hours – then painstakingly rebuilt the section using skin and tissue from her thigh.
Ayla was born in her family’s home state of New Jersey and moved to New York City after high school to pursue her passion for art and dancing
She regularly performed and exhibited her artwork – part of a blossoming career which continued right up until her cancer diagnosis on September 23, 2021
The surgery was a success. Doctors were hopeful that the cancer had been cleared from Ayla’s body and she started a six-week recovery process ahead of a grueling course of radiotherapy and chemotherapy.
During that time, she weened herself off opioid pain medication and had to readjust to eating solid foods again. She was determined to do everything she could to heal, not least so she could enjoy simple pleasures like her favorite meal: a beer and a burger, her parents said.
Pre-radiation scans in November found no detectable cancer and the preventative radiotherapy and chemotherapy treatments started the same month. She underwent 30 rounds of radiation in 30 business days and chemotherapy once a week, ending a few days before Christmas.
The treatment was intense and Ayla suffered bouts of nausea and vomiting, significant pain and the loss of her voice.
Despite the ordeal, Ayla stayed positive and determined. She learned American Sign Language to accommodate for her lost voice and also crafted small gift bags for other patients at Mount Sinai, packed with chocolates, chapsticks and acupuncture rings.
Ayla had surgery to remove the cancer and then underwent a grueling course of radiation and chemotherapy, but it spread throughout her body
The radiation and chemotherapy was intense and Ayla suffered bouts of nausea and vomiting, significant pain and the loss of her voice
Ayla with her father, Daren, who said his daughter’s illness is ‘what MAiD was written for’
Doctors said the side-effects would ease two weeks after her final treatment.
But there was no improvement. If anything, Ayla was getting worse and by mid-January 2022, she complained that the fentanyl patches for the pain also weren’t helping.
‘She was weaker and weaker every day,’ he father said.
Ayla was scheduled for a scan on March 22 to check whether her body was cancer free. Her parents, seeing their daughter continue to deteriorate, refused to wait and several weeks before the date, Daren emailed Ayla’s medical team. ‘I think my daughter is dying,’ he wrote.
The scan was brought forward and revealed, devastatingly, that the cancer had metastasized in 13 places. There were tumors across Ayla’s body, including around her nose, ears, spine and neck.
By then, Ayla weighed just 87 pounds and was in frequent agony. The following day, on March 3, she told her parents: ‘This is no way to live. Please help me die.’
That would be the first of several occasions that Ayla and her parents tried to secure MAiD for her in the month which followed.
On March 8, Ayla deteriorated further during a family gathering at her grandmother’s house in New Jersey for her brother Colton’s birthday.
Her parents took her back to Mount Sinai and she was fast-tracked through ER into a private treatment room where doctors tried to alleviate her symptoms.
Amy said: ‘She asked for medical aid in dying and they would say, ‘well why do you want that?’ [Ayla replied], ‘this is not quality of life and I’m not afraid to die. I just don’t want to be in any more pain’.
Daren said the family received a promise from a palliative care doctor who was present: ‘Don’t worry, now that we’re here, we won’t let you be in pain.’
The doctors weren’t able to keep the promise and despite high doses of medication, Ayla’s agony continued.
‘I called them out on it,’ Daren said. ‘Maybe a week later, half a week later, like ‘you lied to us, you totally lied to us around that’. I was just an angry parent. I think the doctors were doing their best.
‘This patient, this circumstance, this is what MAiD was written for.’
Ayla was allowed to leave hospital on March 18, in line with her wishes to die at home, with hospice care and the promise of ‘aggressive pain management’ in the form of huge quantities of opioid medication.
She spent just under two weeks at home, but the agony remained too much. Doctors said the pain which plagued the end of her life could only be treated in hospital, where she returned on April 1.
Daren describes that night in the hospital as ‘the hardest in my life’.
‘I was not able to advocate for my daughter,’ he said. ‘Here is a man, a father failing at advocating for this girl – clawing at her neck in pain, whining.
‘It’s just the most incredibly hard thing for me to do. And I am a fairly peaceful guy. But man, that was the hardest, that’s the angriest I’ve ever been in my life… it was a bad experience and MAiD would have just made this a beautiful experience.’
Ayla died on Saturday, April 2 at 6.45am.
Ayla’s parents are using her story to campaign for Medical Assistance in Dying in New York
In her final moments, the pain seemed to fade away. After months of suffering, the pain gave way to something ‘beautiful’, her parents said.
‘The sun came up over Central Park, and I just cultivate the love within me and hold her hand and look into her eyes. And I tell her it’s time. And that’s when she has a single tear and gets it,’ Daren said.
‘It wasn’t this pain anymore. This was a process of death, which I think all readers should know is very peaceful and beautiful. This was, in my mind, a spiritual moment.
‘I was there the day she was born on earth and it was beautiful. There’s nothing more beautiful than I’ve ever experienced in those 15 minutes of her passing. Being with my daughter in full love and support, encouraging her to leave us. Encouraging her to be out of pain and free of the body.’
‘She finally had found a pathway out of cancer and into the process of dying,’ Amy said. ‘I am blessed, as Ayla’s mom, to have been with her every single day and every single moment of that journey.’
But, she adds, ‘Ayla shouldn’t have had to do that.’
THE LAW
Medical Aid in Dying is currently legal in Washington DC And ten states: California, Colorado, Hawaii, Maine, Montana, New Jersey, New Mexico, Oregon, Vermont and Washington.
In a case of grim coincidence, MAiD became legal in New Jersey thanks to efforts by Ayla’s grandmother, Reverend Gillian McAllister.
Oregon was the first to legalize MAiD and its policy has largely shaped those of the states which followed. Oregon’s policy is also the template for the proposed law in New York.
Under Oregon’s Death with Dignity Act, the patient must be at least 18 years old, mentally competent and have a prognosis of six months or less to live. Two doctors must approve the request and the patient must be able to administer the drugs themself.
MAiD is different to euthanasia, whereby the drugs are administered to the patient by another person. Euthanasia is illegal in the United States.
Advocates also insist that MAiD must not be considered ‘suicide’ and fiercely oppose terms like ‘physician-assisted suicide’ which opponents often use to describe the process.
The act in New York was first introduced in the 2015-2016 legislative session and supporters believe now, nearly a decade later, a law is close to passing.
Polling by YouGov published in February found overwhelming support among New Yorkers for MAiD. Some 72 percent backed the legislation.
Other national surveys have also indicated around seven in ten Americans believe doctors should be able to help terminally ill patients die.
Ayla Rain Eilert
THE OPPOSITION
The campaign to legalize MAiD in the United States has faced fierce opposition on religious grounds and from disability rights organizations.
The Catholic church is a staunch opponent of MAiD and the New York State Catholic Conference has spoken out against legalization.
One of the leading concerns from disability groups is that the law could be abused to end the lives of patients who do not have the capacity to make a decision themselves.
In a memorandum of opposition delivered in February, the New York Association on Independent Living said: ‘A major concern for people with disabilities is assisted suicide reinforces negative perceptions about being disabled and the idea our lives are not worth living.’
The letter also said the disability community is ‘deeply concerned about coercion and abuse’.
Critics also frequently cite the use of MAiD in Canada, where anyone with a serious incurable condition can apply to die, even if the illness is not terminal.
The country is also looking at the hugely controversial step of making MAiD available to the mentally ill.
Some 13,241 people died using MAiD in Canada in 2022, which was 4.1 percent of deaths in the country and a rise from 1,086 in 2016 when it was first introduced.
Opponents fear legalizing it would lead to a similarly liberal approach to its use in the United States.
ADVOCATES
Daren and Amy have worked closely with Compassion and Choices, which is leading the campaign to legalize MAiD in New York and other states where it remains illegal.
The organization and others like it strongly reject the notion MAiD in the US would be anything like the policy in Canada. They say there is no evidence assisted death has ever been abused in the US states where it is legal.
Ayla wither her mom, Amy, who said MAiD would have prevented her daughter needlessly suffering before death
Corinne Carey, Compassion and Choices’ senior campaign director for New York, told DailyMail.com she is hopeful that the law could be changed in the state before 2025.
She urged lawmakers to ‘imagine how uncomfortable it is for a family member to sit by and watch a loved one beg for death.’
‘Imagine how uncomfortable it is to be a terminally ill person and to have lost control over everything else, and have no control over what the end of their life looks like,’ she said.
Carey spoke with Ayla in the weeks before she passed, a heartbreaking conversation about how MAiD simply was not an option for her.
She also described the moving stories from families whose loved ones were able to access MAiD in states where it is legal.
‘[They] talk about the beauty and the peace and the blessing it was for their family, around the bed and holding the body and saying goodbye in a way that was not in distress.’
Carey said MAiD policies in the United States are ‘completely different’ to Canada’s. Through around 25 years of MAiD in Oregon, the policy has remained only available to the most seriously ill dying patients and there are no examples of its abuse, she said.
‘We don’t have to look to Canada for horror stories,’ said Carey. ‘If there had been a horror story it would have happened here in the US, and it never has.’
Compassion and Choices said dozens of professional organizations across sectors of medicine and law have now publicly supported MAiD in New York.
Professor Christopher Riddle, the Chair of Philosophy at Utica University, also said the comparisons to Canada were incorrect.
He told DailyMail.com that the practice is morally the same as a patient refusing treatment in order to hasten death.
Professor Riddle added: ‘The longer other places have this in place in the US, the longer we see that there is not abuse of the kind that people warn us of, that there’s not the slippery slopes that people will claim are happening in Canada or something like that.’