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, says Dr. Timothy Quill, a palliative care specialist at the University of Rochester School of Medicine and longtime advocate of medical aid-in-dying.

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

The document offers two options. One option is a request for “comfort feeding” — providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease. Another alternative 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,” says 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.”

But critics say it’s a disturbing effort to allow withdrawal of basic sustenance from the most vulnerable in society.

“I think oral feeding is basic care,” says Richard Doerflinger, an associate scholar with the Charlotte Lozier Institute, which opposes abortion and euthanasia. “It’s what they want here and now that matters. If they start taking food, you give them food.”

Advance directives are legally recognized documents that specify care if a person is incapacitated. They can confirm that a patient doesn’t want to be resuscitated or kept on mechanical life support, such as a ventilator or feeding tube, if they have a terminal condition from which they’re not likely to recover.

However, the documents typically say nothing about withdrawing hand-feeding of food or fluids.

The New York directive, in contrast, offers option A, which allows refusal of all oral assisted-feeding. Option B permits comfort-focused feeding.

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

The new form goes further than a similar dementia directive introduced last year by another group that supports aid-in-dying, End of Life Washington. That document says that a person with dementia who accepts food or drink should receive oral nourishment until he or she is unwilling or unable to do so.

The New York document says, “My instructions are that I do NOT want to be fed by hand, even if I appear to cooperate in being fed by opening my mouth.”

Whether the new directive will be honored in New York — or anywhere else — is unclear. Legal scholars and ethicists say directives to withdraw oral assisted-feeding are prohibited in several states.

Many care facilities are unlikely to cooperate, says Thaddeus Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law. Doctors have a duty to honor patient wishes, but they can refuse if they have medical or moral qualms.

“Even solidly legal advance directives do not and cannot ensure that wishes are respected,” Pope writes in an email. “They can only ‘help assure’ that.”

Directors at End of Life Choices New York consider the document “legally sturdy,” Schwarz writes, adding: “Of course it’s going to end up in court.”

Whether assisted feeding can be withdrawn was at the center of recent high-profile cases in which patients with dementia were spoon-fed against their documented wishes because they continued to open their mouths. In a case in Canada, a court ruled that such feeding is basic care that can’t be withdrawn.

People who fill out the directives may be more likely to have them honored if they remain at home, Schwarz says. She stresses that patients should make their wishes known far in advance and choose health care agents who will be strong advocates. Attorneys say the documents should be updated regularly.

Doerflinger, however, says creating the directive and making it available misses a crucial point: People who don’t have dementia now can’t know how they’ll feel later — yet, they’re deciding in advance to forgo nourishment.

“The question is: Do we, the able-bodied, have a right to discriminate against the disabled people we will later become?” Doerflinger says.

Already, though, Schwarz has heard from people determined to put the new directive in place.

Janet Dwyer, 59, of New York, says her family was horrified by her father’s lingering death after a heart attack four years ago; Her family has a strong history of dementia, so when Dwyer learned there was a directive to address terminal illness and dementia, she signed it. So did her husband, John Harney, who is also 59.

“Judith informed me of the Option A or Option B scenarios,” says Dwyer, who opted for the more aggressive option — refusal of all oral assisted-feeding. “I said, ‘Well, that is just perfect.”

Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

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Velva Poole has spent about 20 years as a social worker, mostly in Louisville, Ky. She’s seen people ravaged by methamphetamines and cocaine; now it’s mostly opioids. Most of her clients are parents who have lost custody of their children because of drug use. Poole remembers one mom in particular.

“She had her kids removed the first time for cocaine. And then she had actually gotten them back,” she says. But three months later, the mother relapsed and overdosed on heroin.

“She had to go through the whole thing all over again — having supervised visits with the kids, then having overnights,” Poole recalls. Starting again from the bottom, the mom took steps to reclaim her life.

And, eventually, she did regain custody of her children. Poole recently ran into the woman at the grocery store.

“She hugged me,” Poole says. “I don’t know how to describe it. It just makes you feel like, wow, what you did really did make a difference in someone’s life.”

Poole is now a supervisor in the Sobriety Treatment and Recovery Teams program, which is funded primarily by the state. It’s an intensive program for parents who have had their kids taken away because of substance abuse and the resulting neglect or mistreatment of the children. The goal is to create a faster process to reunite those families.

It works like this in Kentucky: Someone reports a parent to Child Protective Services if they suspect the adult has an addiction problem and children aren’t being taken care of. If there’s evidence to support the claim, the parent then has a choice — they can go through the standard CPS process, or enroll in START.

Both options have the parent meet with a social worker, and include weekly drug screenings and daily drug treatment, as well as regular attendance at meetings of Alcoholics Anonymous or Narcotics Anonymous. But START also assigns a mentor to families; the parent has to meet with the mentor once a week. The mentor also drives the parent to and from some appointments and helps them get other services they may need.

Rhonda Maddox is one the family mentors.

“I’m able to open that door, and say, ‘I’ve been where you are. We might not walk down the same road but I done some of the same things you have,’ ” Maddox says.

She stopped using drugs 14 years ago.

“I began using drugs at the age of 9,” Maddox recalls. “My mom was gone [and] my dad was gone, due to their addictions. So I started using. It stayed like that for a long time, going on into high school. I had a few kids then, and then I abandoned those two kids on my granny.”

Maddox eventually got sober and regained custody of her children. Hearing her story makes it easier for clients to open up and and accept help, Poole says.

“It’s very helpful for the client to be able to relate to someone that’s been in their shoes,” she says.

The START program began in Ohio and expanded into Kentucky in 2007. Since then, research has shown it has a higher success rate in reuniting families than the traditional child welfare process.

But the opioid crisis has posed new challenges, Maddox says.

“I had a few of my clients that passed away [after] an overdose — was kind of devastating,” she says. “Sometimes I wonder if there was something else I could have done.”

In each case, Maddox and Poole have a year to try to reunite START parents with their children.

Former START director Tina Willauer says, despite the benefits of enrolling in the START program, parents are still up against significant societal stigma because of their drug use.

“There’s this question, ‘should we even give them treatment?’ — almost as if they’re throwaway because they have an opioid use disorder,” Willauer says.

She believes there are important reasons to keep families together.

“If you’re pulling a child out of a home and putting them in a foster home, we’re removing them from the only people they know — their family. They might have to leave their church; they might have to leave their community,” Willauer says. “So, everything they know. It’s traumatic on many, many levels.”

Willauer and the staff at START wish every parent could go through their demanding program. But START costs more money than the standard, less-intensive process of child protective services. With the state of Kentucky facing a budget crunch, expansion of START is not likely to happen anytime soon.

This story is part of NPR’s reporting partnership with Louisville Public Media and Kaiser Health News.

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