A Daughter's Final Weeks Make the Case for New York's Medical Aid in Dying Act

On the night of Friday, April 1, Ayla Rain Eilert lay in a hospital bed clawing at her neck, crying, whimpering and convulsing. Her parents were with her. Morphine did not arrive until 6 a.m. the next day, April 2, and by then her breathing had become very deep, and they understood she was dying. She was 24. This account comes from her parents, who wrote it as an opinion piece arguing that New York should pass its Medical Aid in Dying Act.

Ayla had been a ballet dancer, painter and certified yoga instructor living in New York City at 23. Less than a year later she was dead of an aggressive tongue cancer, which her parents say spread through her body despite the best treatment and palliative care available. In the last weeks of her life, they write, she begged for the one option that might have let her die peacefully: medical aid in dying. It is legal in Washington, D.C., and 10 states, including New Jersey and Vermont, but not in New York.

The medical timeline they lay out is long. On Sept. 29, surgeons spent 11 and a half hours removing 22 lymph nodes and half her tongue, then rebuilt the tongue using part of her thigh. Afterward her scans were clear. Because the cancer was so aggressive, her doctors still recommended radiation and chemotherapy, and told the family her body would find it easier to recover from being hit by a bus.

Chemoradiation began in November and was intensely painful. For six weeks she vomited blood and fought secondary infections. By her 24th birthday on Dec. 14 she had lost her voice and could no longer walk the quarter-mile from her apartment to the hospital. By February she lacked the strength to brush her teeth or get to the bathroom, and she vomited whatever she swallowed. Her weight fell from 130 pounds to 87.

A scan on March 2 showed the cancer had spread to 13 places, with significant masses in her head, along her spine, and in her chest, ribs, lungs and buttocks. She agreed to try immunotherapy, a long shot, hoping it might at least ease her pain. It did not work, and the pain worsened. She began asking every social worker, doctor or nurse who would listen, "Please help me die." Her parents say she was not afraid of death; she had endured surgery, chemoradiation and an undiagnosed spread of the cancer while her pain medications were being reduced. In dying, she begged not to suffer.

On March 18, hospital staff sent her home for hospice care with a promise of aggressive pain management, but the hospice was not set up to handle her level of pain. On April 1 it asked the family to return to the hospital, saying the hospital's doctors and on-site pharmacy could provide everything she needed. Then came the night of suffering and the morphine at 6 a.m. Her parents told her, "Ayla, it's OK, you can let go now." Her eyes welled up and her breathing slowed. "You're doing it, little girl. We love you," they said.

The parents argue the law has stalled for six years, since it was first introduced, even though polling shows most New Yorkers, across geographic, political and racial lines, support it, as do most New York physicians. They also cite a recent national poll in which voters were eight times more likely than not to back a legislative candidate who supports such legislation. They say Ayla is one of more than 20 New York advocates who have died without the option since 2016.

Recently the Eilerts joined most of those families at a rally and candle-lighting ceremony, and met with lawmakers or their staff. They are pressing for a vote before the legislative session ends June 2. The Eilerts, longtime residents of central New Jersey, now live in Midlothian, Texas. They say they will keep pushing Albany until the bill passes.