Filing for a “Wrongful Life”

More Americans are writing end-of-life instructions as the pandemic renders such decisions less abstract. But are medical providers listening? By Paula Span/ NYTimes / 1/22/2021

When Elaine Greenberg’s husband, Gerald, was diagnosed with early-onset Alzheimer’s, his specific advance directive — comfort measures only — went unheeded at the hospital where he was treated.Credit…Jackie Molloy for The New York Times

Gerald and Elaine Greenberg married in 1976, as dental students. They practiced on Long Island and in Manhattan and raised two sons. Then in 2010, she noticed that her husband, the math whiz, was having trouble calculating tips in restaurants. “He just didn’t seem as sharp,” she said.

The devastating diagnosis from a neurologist: early-onset Alzheimer’s disease.

“We knew what could be ahead for him,” Elaine Greenberg said. “He didn’t want to lie there with tubes and diapers. That’s not how he wanted to end his life.”

Together, they called a lawyer and drew up advance directives in 2011. “We gave it a lot of thought,” she said. His directive was very specific: If he became terminally ill, permanently unconscious or seriously and irreversibly brain-damaged, he wanted comfort measures only. No cardiac resuscitation or mechanical respiration. No tube feeding. No antibiotics.

Gerald Greenberg died in 2016 — and a recent lawsuit brought by his widow charges that when he was unresponsive and near death from sepsis at Montefiore New Rochelle Hospital in Westchester County, the hospital and an attending physician there failed to follow his directive.

The suit alleges that they also disregarded a New York State MOLST — medical orders for life-sustaining treatment — form and his spouse’s explicit instructions to a doctor who called to seek her guidance.

Medical records show that her husband received antibiotics and other unwanted treatments and tests. The suit charges that he survived for about a month in the unresponsive state that he had sought to avoid. (A Montefiore spokesman said the hospital could not comment, given ongoing litigation.)

“They made the end of his life horrible and painful and humiliating,” Dr. Greenberg said. “What’s the sense of having a living will if it’s not honored?”

Lawsuits charging negligence or malpractice by hospitals and doctors typically claim that they have failed to save patients’ lives. More recently, though, some families have sued if providers failed to heed patients’ documented wishes and prevented death from occurring.

Dr. Greenberg with Gerald Greenberg and their first grandchild in 2016.Credit…via Elaine Greenberg

“In the past, people have said, ‘How have we harmed you if we kept you alive?’” said Thaddeus Pope, a professor at the Mitchell Hamline School of Law in St. Paul, Minn., who follows end-of-life legal cases. “Now, courts have said this is a compensable injury.”

Lawsuits charging negligence or malpractice by hospitals and doctors typically claim that they have failed to save patients’ lives. More recently, though, some families have sued if providers failed to heed patients’ documented wishes and prevented death from occurring.

“In the past, people have said, ‘How have we harmed you if we kept you alive?’” said Thaddeus Pope, a professor at the Mitchell Hamline School of Law in St. Paul, Minn., who follows end-of-life legal cases. “Now, courts have said this is a compensable injury.”

Patients themselves may bear some responsibility for mix-ups. Advance directives go astray, get locked in desk drawers, become so outdated that designated decision-makers have died. Or they use language like “no heroic measures,” so vague that “it’s hard for doctors to comply with,” Mr. Pope said.

The state MOLST or POLST (portable orders for life-sustaining treatment) forms strive to make the decisions concrete by providing detailed documentation of patients’ wishes and functioning as physicians’ orders. Studies in Oregon and West Virginia have demonstrated the forms’ effectiveness, but as several of these cases show, that is not universal.

 

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