An Oregon woman with Alzheimer's disease, whose husband claimed she was kept alive with spoon-feeding against her written wishes, has died.
Nora Harris, 64, died early Wednesday at the Fern Gardens senior care center in Medford, Ore. Her husband, Bill Harris, said the death marks the end of an eight-year battle with the progressive, debilitating disease, which included an unsuccessful court fight to withdraw all food and liquid.
"It is a blessing and a relief," he said.
Nora Harris, a librarian and scholar who was diagnosed with early-onset Alzheimer's disease at age 56, had drafted an advance directive that called for no measures to prolong her life, including artificial nutrition and hydration.
Her husband contended that the document covered oral assisted feeding, too. He went to court last year to force staff at the center to stop spoon-feeding Nora, saying the practice violated his wife's wishes and her advance directive.
"Nora never wanted to live like this," said Bill, 76, a retired tech worker.
However, a local judge denied his request, siding with the state's long-term care ombudsman who said state rules to prevent abuse required the center to offer residents three meals each day and provide help eating, if needed. That practice continued in recent weeks, even as Nora's kidneys failed and she became bed-bound.
"I had to struggle with everybody all the way through to the end to try and respect her wishes," Bill said.
The controversy turned Nora Harris into a central character in an ongoing debate over advance directives and dementia. At issue is whether patients with Alzheimer's and other progressive diseases can stipulate in advance that they want oral food and liquid stopped at a certain point, hastening death through dehydration.
It's a controversial form of what's known as VSED — voluntarily stopping eating and drinking — a small but growing practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, usually resulting in death within two weeks.
"The right to VSED is reasonably well-established, but it's when a person isn't competent that's the issue," said Paul T. Menzel, a retired bioethicist at Pacific Lutheran University in Tacoma, Wash., who has written extensively on the topic.
Unlike medical aid-in-dying, VSED doesn't require a law or a doctor's approval. But the question of whether it's possible for people who can no longer actively consent to the procedure remains ethically and legally unclear. That's especially true for patients who open their mouths to accept food and fluids, as Nora Harris did until her last days.
"VSED is a unique exit option," said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law. "This is probably the least discussed option. We don't have statutes, we don't have regulations, we don't have a court case."
Advocates for VSED contend that, with proper medical support, it can result in a peaceful death that allows patients control over their own fate. Critics say the practice amounts to torture and that it will lead to starvation of elderly, disabled and mentally ill people.
Advance directives that tell caregivers to continue or withdraw artificial nutrition and hydration provided through feeding tubes or IV lines are common. Most don't mention assisted oral feeding, however.
Nearly two dozen states have laws that address assisted feeding, including many that specifically prohibit withdrawing oral food and fluids. Other states address only artificial feeding or are unclear or silent on the issue.
Just one state — Idaho — appears to sanction withdrawal of assisted feeding by a health care proxy "in accordance with a valid directive," according to a July analysis compiled by Charles Sabatino of the American Bar Association.
But Idaho state law also prohibits any form of assisted suicide and requires "comfort care" for patients if artificial nutrition and hydration is withdrawn. It's not clear whether a request to halt assisted feeding would be honored, said Robert Aldridge, a Boise lawyer who has worked for years to shape Idaho's Medical Consent and Natural Death Act.
"Assisted feeding is a somewhat limited situation if the patient is not competent," Aldridge said in an email.
With more than 5.5 million people living with dementia in the U.S., questions about stopping assisted feeding are becoming more common, said Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying.
"Increasingly, this is going to be an issue," she said. "The people I talk to are much more afraid of Alzheimer's than they are of cancer. They are afraid of being stuck for years in a nursing home in a diaper."
The doctor overseeing Nora Harris' case, Dr. Karen Kahn, called the situation "one gigantic gray zone."
On one hand, research shows that "feeding somebody with end-stage dementia will not prolong their life," said Kahn. On the other hand, if a patient accepts food and swallows it, "it should be incumbent on them to feed her," she added.
Bill Harris said he sat for three hours on Tuesday afternoon watching as Nora took tortured breaths. She died at 1:32 a.m., he said.
"What the court case did a year ago in July was they condemned her to the full gamut of the disease," he said.
He said he'll continue to push for changes to state law to allow people with dementia to stipulate in advance if they don't want assisted feeding.
"From my perspective, the way the laws are written now, they do not respect people with dementia," he said.
When Nora Harris was diagnosed with Alzheimer's in 2009, she made arrangements to donate her brain and spinal cord tissue to the University of California-San Francisco, medical school for research.
"She didn't want anyone else to go through what she did," Bill Harris said.
KHN's coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.