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‘Aggressive’ new advance directive would let dementia patients refuse food


 

Treading into ethically and legally uncertain territory, a New York end-of-life agency has approved a new document that lets people stipulate in advance that they don’t want food or water if they develop severe dementia.

The directive, finalized this month by the board for End of Life Choices New York, aims to provide patients a way to hasten death in late-stage dementia, if they choose.

Dementia is a terminal illness, but even in the seven U.S. jurisdictions that allow medical aid-in-dying, it’s not a condition covered by the laws. Increasingly, patients are seeking other options, said Timothy Quill, MD, a palliative care expert at the University of Rochester (N.Y.) and an advocate of the practice.

“Developing incapacitating dementia is certainly my and a lot of people’s worst nightmare,” he said. “This is an aggressive document. It’s a way of addressing a real problem, which is the prospect of advanced dementia.”

The document offers two options: one that requests “comfort feeding” – providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease – and one that would halt all assisted eating and drinking, even if a patient seems willing to accept it.

Supporters say it’s the strongest effort to date to allow people who want to avoid the ravages of advanced dementia to make their final wishes known – while they still have the ability to do so.

“They do not want their dying prolonged,” said Judith Schwarz, who drafted the document as clinical director for the advocacy group. “This is an informed and thoughtful choice that needs a great deal of reflection and discussion.”

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