Medical Aid in Dying: Long Island Woman Considers New Law

The Willen Family’s Decision Under New York’s MAID Law

Kim Willen, a 63-year-old former attorney and speech pathologist from Northport, was diagnosed four years ago with progressive supranuclear palsy, a rare and untreatable neurodegenerative brain disease affecting between six and 10 people per 100,000, according to physicians at NYU Langone and statements provided to Newsday. Her husband, Joseph Willen, explained that his wife decided she will consider using the newly enacted law to end her life when the disease renders her permanently bedridden and unable to communicate.

“When she gets to that point, there’s no quality of life,” Joseph Willen told Newsday. “I don’t think a human being should have to bear that, nor their family.” Dr. Nick Fitterman, president of Huntington Hospital, who consulted on Kim Willen’s care, described progressive supranuclear palsy to Newsday as combining Parkinson’s disease and ALS into an untreatable condition where patients typically succumb within six to eight years.

Strict Legal Parameters and Safeguards for Medical Aid in Dying

Enacted after Gov. Kathy Hochul signed the legislation on Feb. 6, the Medical Aid in Dying Act requires strict procedures before a prescription can be fulfilled, according to the New York State Department of Health. Patients must submit both an oral request recorded by audio or video and a signed written request witnessed by two people. An attending physician and a consulting physician must confirm the terminal prognosis and the patient’s capacity to make medical decisions. Additionally, patients must undergo a mental health evaluation by a psychologist or psychiatrist and complete a five-day waiting period between writing and filling the prescription, according to the Department of Health.

Jennifer Cona, an elder law attorney who advised the Willen family, noted that Kim Willen’s physical decline presents logistical hurdles under the law’s exact wording. Patients must be able to communicate their request and self-administer the medication orally, meaning rapid physical deterioration could outpace her ability to meet the statutory parameters, according to Cona.

Legal and Ethical Debate Surrounding the End-of-Life Statute

While proponents emphasize personal autonomy and the relief of prolonged suffering, critics of the law argue that it violates physicians’ oaths and that adequate palliative care and pain management can address end-of-life suffering, according to reporting by Newsday.

State Health Commissioner Dr. James McDonald stated that end-of-life choices remain deeply personal and that the Department of Health established guidance to ensure comfort and dignity while preventing misuse, according to Newsday. The Department of Health announced that formal data regarding the utilization of the statute will be published next year in an annual report.

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