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"Aggressive" new Advance policy would deny dementia patients food

Entering Ethically and Legally Insecure Territory, a New York End-of-Life agency has approved a new document that lets people know in advance that they do not want food or water when they leave develop severe dementia.

The policy, completed this month by the Board of End of Life Choices New York, aims to provide patients with a way to speed death in the late stage of dementia if they decide.

Dementia is a deadly disease, but even in the seven US jurisdictions that allow medical help dying, it is not a condition covered by the laws. Increasingly, patients are looking for other options, Dr. Timothy Quill, a palliative care expert at the University of Rochester School of Medicine and longtime proponent of practice.

"Developing debilitating dementia is certainly my worst nightmare," he said. "This is an aggressive document, it's a way to tackle a real problem, namely the prospect of advanced dementia."

The document offers two options: one that calls for "comfort feeding" – oral food and water, if one Patient enjoys or allows the last stages of the disease – and one that would stop all supported eating and drinking, even if a patient is willing to accept it.

Supporters say it is the strongest effort to date to help people who want to avoid the devastation of advanced dementia, to make known their last wishes – while they are still able to do so.

"They do not want their dying to last longer," said Judith Schwarz, who designed the document as the Clinical Director for the Interest Group. "This is an informed and thoughtful decision that requires a lot of thought and discussion."

But critics say that removing the basic needs of the most vulnerable in society is a worrying effort.

"I think oral nutrition is the primary care," said Richard Doerflinger, Associate Scientist at the Charlotte Lozier Institute, who opposes abortion and euthanasia. "It's important what they want here and now, when they start taking food, give them food."

Advance directives are legal documents that specify care when a person is incapacitated. They may confirm that a patient does not want to be resuscitated or is in a life-sustaining situation, such as a ventilator or a feeding tube, when they have a terminal condition that they are unlikely to recover.

However, the documents usually say nothing about removing the handfeeding of food or liquids.

The New York Directive, on the other hand, offers option A, which allows refusal of all oral assisted feeding. Option B allows comfort-oriented feeding.

Both options would only be invoked when a patient is diagnosed with moderate or severe dementia, defined as Stage 6 or 7 of a widely used test known as the Functional Assessment Staging Tool (FAST). At these stages, patients would be unable to feed themselves or make health decisions.

The new form continues as a similar dementia policy introduced last year by another group supporting euthanasia, End of Life Washington. This document states that a person with dementia who accepts food or drink should be given oral nutrition until they are ready or able to do so.

The New York Document says, "My instructions are that I DO NOT want to be fed by hand, even though I seem to assist in feeding by opening my mouth."

Whether the New Directive in New York or elsewhere – is honored, is unclear. Legal scholars and ethicists say that guidelines on the removal of oral care products are banned in several states. Many care facilities are unlikely to cooperate, said Thaddeus Pope, director of the Institute of Health Law at Hamline University in St. Paul, Minnesota, and an end-of-life expert. Doctors have a duty to fulfill patients' wishes, but they can reject them if they have medical or moral concerns.

"Even solid legal living arrangements do not guarantee that wishes are respected," Pope said in an email. "You can only help to insure that."

Directors at the End of Life Choices New York consider the document "legally robust," Black said, adding, "Of course it will end up in court."

Whether Assisted Feeding can be withdrawn has been the focus of recent high-profile cases in which patients with dementia were spoon-fed their documented desires because they kept opening their mouths. In one case in Canada, a court ruled that this feeding was a primary care that can not be withdrawn.

Those who fill in the guidelines can treat them better if they stay at home, Schwarz said. She emphasized that patients should publicize their wishes well in advance and choose health counselors who will be strong advocates. Legal experts say the documents should be updated regularly.

Doerflinger said, however, that the creation of the directive and its provision miss a crucial point: people who do not have dementia now can not know how they feel later on they decide in advance to forgo food.

"The question is: as disabled people, do we have the right to discriminate against the disabled, who we will become later?" Said Dörflinger.

Already, Black has heard from people who are determined to put the new directive into effect.

Janet Dwyer, 59, of New York, said her family was appalled by her father's continued death after a heart attack four years ago and a family history of dementia. When Dwyer learned that there was a directive on the treatment of deadly diseases and dementia, she signed it. Her husband John Harney was 59 years old.

"Judith briefed me on the Option A or Option B scenarios," Dwyer said, choosing A. "I said, 'Well, that's just perfect.' 19659031] window.addEventListener ("DOMContentLoaded", function () {});
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