Sunday, May 20, 2018
Health

NPR host Diane Rehm's disclosure about her husband's death puts light on end-of-life choice

During a radio talk show this week about right-to-die laws, host Diane Rehm made a very personal disclosure: Suffering terribly from Parkinson's disease, her husband John stopped eating and drinking to hasten his death.

It was his only remaining choice, she said, after his doctor told him he could not legally or ethically help him end his life.

"John took the extraordinarily courageous route of saying, 'I will no longer drink, I will no longer eat,' " Rehm told listeners of her nationally syndicated public radio program.

"And he died in 10 days."

In her Tuesday broadcast, Rehm put a face on a quiet practice that is legal even in states without aid-in-dying laws. Right-do-die advocates, and Rehm herself, argue it should not be the only choice for terminally ill patients. But advocates also say it's an option, one they hope will be brought out of the shadows by stories like hers.

"I think there's just a general lack of understanding that you have options," said Barbara Coombs Lee, director of Compassion and Choices, a national group that advocates for "aid-in-dying," a term they use instead of physician-assisted suicide. "This is one of them."

There are no statistics on the number of patients who voluntarily stop eating and drinking, often called VSED for short. Terminally ill patients eventually stop eating and drinking as death nears, but that natural process is distinct from a conscious decision to halt nourishment, experts say.

"That's very difficult to do," said Dr. Deidra Woods, chief medical officer of Pinellas-based Suncoast Hospice, who recalls only two such cases in her more than 20-year career. "Because it's a very basic instinct to seek food and water."

Patients in hospice often talk with the staff about wanting to end their lives rather than waiting for their disease to run its course, said Dr. Peter Radice, medical director of LifePath Hospice, which serves Hillsborough. He said hospice teams, which can include social workers, chaplains and psychologists, usually find a way to help patients deal with pain or existential fears.

But not always. Radice once had a patient with a severe neurological disease who decided to stop eating and drinking. Hospice's job in such a case, he said, is to help ease pain until death occurs.

"He made that choice, and we were able to help him," said Radice.

One study suggests the practice may be less rare than some believe, even in a state like Oregon, which permits dying patients to seek a doctor's prescription for a lethal dose of drugs.

A survey of hospice nurses in Oregon showed one-third of them reported having cared for patients who decided to stop food and water to hasten their deaths, according to a 2003 study published in the New England Journal of Medicine. Those survey results, covering a period of four years, suggest the number of patients who died after refusing food and water was nearly twice as high as those who died as a result of physician-assisted suicide, the study said.

Woods and other experts say that the act of refusing to eat and drink isn't as physically painful as some might expect, though pain medications are continued primarily to treat symptoms of their disease. The most common side effects are initial hunger pangs and a very dry mouth.

"You're slowing down, you're turning off. You're not writhing in pain as you would from an infection or wound or inflamed body part," said Jay Wolfson, a University of South Florida public health and medicine professor who served as court-appointed guardian for Terri Schiavo, the Pinellas County woman who spent years on life support.

Rehm told NBC News that her husband was given low doses of morphine after he stopped nourishment and did not appear to be in pain. She said she kept lotion on his lips and tiny sponges in his mouth to keep him comfortable.

While physician-assisted suicide is legal in only five states, VSED is legal everywhere because the U.S. Supreme Court has ruled that mentally competent people cannot be force fed, said Coombs Lee.

That means there are few legal hurdles that must be cleared by patients who made such a decision, said Marshall Kapp, director of the Center for Innovative Collaboration in Medicine and Law at Florida State University.

"If one could foresee the circumstances in advance, you could record it in an advance directive. But the key question is the mental capacity of the individual," said Kapp. "If the individual has the mental ability to understand their options and engage in a rational process, then there's consensus they have the right to make that decision."

Still, some patients face barriers. Three years ago, an assisted living facility in New Mexico attracted national attention when it tried to evict an elderly couple with many health problems who chose to stop eating and drinking.

And even though it's legal, the practice can present challenging questions. While many say that giving up eating and drinking is equivalent to stopping medical treatment, some disagree.

Dr. Daniel Sulmasy, a professor of medicine and ethics at the University of Chicago, told CommonHealth, a Boston public radio program, that VSED blurs the distinction between "killing and allowing to die."

Medical treatment "interferes with the natural history of a disease," he said, "but the person who has voluntarily stopped eating and drinking — they can still eat and drink."

Experts say patients must make sure their loved ones are on board with their decision. Rehm told NBC News that it was difficult to watch her husband in his final days. "I wanted to take applesauce and put it in his mouth," she said. "But you can't do that. You have to respect someone else's wishes."

Radice, the LifePath Hospice medical director, said he routinely hears that sentiment from family members when patients are close to death.

"Food and drinking is so intertwined with nourishment and taking care of people," said Radice. "When you get to a point where the patient can't eat any more, that's more than just stopping an IV. It's stopping the care by your family."

Jodie Tillman can be reached at (813)226-3374 or [email protected] Follow @jtillmantimes.

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