Not her choice
Former librarian Nora Harris filled out an advance directive and told family and friends she didn't want measures taken to prolong her life after she received the devastating diagnosis of early onset Alzheimer's disease.
Now unable to communicate, she is being spoon-fed because the State Long-Term Care Ombudsman Office says the nursing facility where she lives must help her eat.
Nora's husband, Bill Harris of Ashland, filed a civil case in Jackson County Circuit Court to try and stop the spoon-feeding, but lost his case on July 13.
"My view is the advance directive and Nora's wishes were ignored," Bill says. "There was overwhelming evidence and testimony that she wouldn't want to be spoon-fed."
In issuing her decision, Jackson County Circuit Judge Patricia Crain said she could not order the nursing home to stop spoon-feeding Nora because the state ombudsman's office says not helping her eat would be a violation of state law.
"It's not a happy decision for me," Crain told Bill and his daughter during the July 13 court hearing. "From what you describe of your wife and your mom, she would hate this. She would hate it."
Although food isn't being shoved in Nora's mouth, Crain said in some ways Nora is being forced to eat because if she were still competent she would not want the spoon-feeding intervention.
After consulting an expert on appeals, Harris has decided not to challenge Crain's decision. Continuing the fight likely would cost $10,000 — but more importantly, the appeal would be halted if Nora dies. Harris doesn't think she would survive the 18-month to three-year protracted court battle.
The case has experts who prepare advance directives wondering whether they should start bringing up the issue of spoon-feeding with their clients.
Advance directives, which give directions for medical care in case a person becomes incapacitated, usually cover only artificial nutrition and hydration delivered via feeding tubes or intravenous lines.
Attorney Jason Broesder, who represented Bill in his court case, says he has started having discussions with his advance directive clients about spoon-feeding.
"I tell clients, 'You need to think about this. If you would not want to be spoon-fed, you need to specifically include that. The state forces you to be spoon-fed when you can no longer think or communicate for yourself,'" Broesder says.
But even if people began addressing spoon-feeding in advance directives, it's not clear yet whether those instructions could be legally followed.
Born in 1953, Nora married Bill in 1977, then graduated as valedictorian of her college class in 1979 with a bachelor's degree in English literature, specializing in Virginia Woolf.
She stayed home for years to raise their daughter, then went back to school in 1994 to earn a master's degree in library and information sciences. Nora rose to become a head librarian in California, where the couple lived.
"She was an extremely bright person," Bill says.
After experiencing memory problems, she left her head librarian job and became a book indexer. She and her husband realized something was very wrong when she turned in an index that was missing an entire section.
In June 2009, Nora was diagnosed with early onset Alzheimer's disease. She was 56.
The couple joined Alzheimer's support groups, hired an attorney to create an advance directive, and eventually moved to Ashland, where they had enjoyed watching plays for decades. Knowing Nora could need prolonged care because of her relatively young age, they were drawn to Oregon, which has lower long-term-care costs than California.
In 2013, Bill made the difficult decision to place his wife in Fern Gardens, a Medford memory care facility specifically designed for patients with Alzheimer's and dementia. A sunny garden courtyard is encircled by a hall, allowing patients to wander safely when they leave their rooms.
Although he wanted to retire, Bill, who is now 74, continues to work in information technology to pay for his wife's care, which costs thousands of dollars each month. Like many family caregivers for Alzheimer's patients, he fears he may die before his spouse.
In 2014 and again in 2015, Nora's weight dropped dramatically and she was placed in hospice care. Her family believed the end was near each time.
Then Bill learned a volunteer ombudsman had directed Fern Gardens staff members to spoon-feed Nora after seeing her with a sandwich while other patients were eating a hot, prepared meal. At that time, she was able to eat with her hands, but not utensils.
Nora, 63, now cannot eat without prompting and someone feeding her, according to her husband.
Bill tried to have the spoon-feeding stopped, but was overruled by the Oregon ombudsman's office, which is tasked with protecting patients' rights.
"Fern Gardens would have continued to follow Bill's directions, but they had their hands tied. The facility didn't want to clash with the state ombudsman's office," Broesder says.
Broesder says many people with terminal illnesses stop eating and drinking as death approaches.
Bill says with palliative care to ease any suffering, his wife could have passed away by now in a relatively peaceful way — if not for the spoon-feeding.
"The court sentenced Nora to experience the full gamut of Alzheimer's, with choking, swallowing problems, food in the lungs and pneumonia," he says.
According to the Alzheimer's Association, people with the disease often have a hard time eating or swallowing. The association says there is no proof tube feeding has any significant benefits or extends life. Additionally, tube feeding can cause infections and patients may have to be physically restrained so they don't pull out the tube.
"There are other ways to feed a person with severe Alzheimer's, such as a carefully monitored, assisted-feeding program," the association says. "For someone who can no longer swallow, an approach focusing on comfort in dying may be most appropriate."
State rules vs. advance directives
According to Oregon rules regarding nursing homes, facilities must make three nutritious, palatable meals plus snacks available every day.
Facilities must also provide "assistance with eating (e.g., supervision of eating, cueing, or the use of special utensils)," according to Oregon Administrative Rules.
Cueing is defined as giving verbal or visual clues to help during daily living activities.
Eric Foster, an attorney appointed by the court to represent Nora, argued in court documents that Oregon law requires Fern Gardens to assist Nora with eating.
He noted her advance directive did not explicitly say she did not want help eating, plus it stated her husband could decide to withhold only artificial nutrition and hydration on her behalf.
"Since Mrs. Harris did not include specific instruction that she not be helped with eating, the evidence is not yet clear and convincing Fern Gardens should not help Mrs. Harris eat," Foster wrote.
Foster also argued, "The best evidence of whether Mrs. Harris should be provided with food assistance is her current desire to eat. Mrs. Harris could consistently refuse to eat, if that was her desire. If she refuses meals in the future, Fern Gardens will not pressure her to eat."
He wrote Nora should be given the chance to satisfy her hunger through assisted eating, and should not be deprived of the comfort and social interaction that help with eating provides.
However, both Bill and Broesder contend she is not choosing to eat, but is responding reflexively to a spoon held up to her mouth.
Bill says the attorney appointed by the court for his wife seemed to be representing the state ombudsman office's view, not looking out for her best interests.
"This is a really tough case for the family. This is a really tough case for my client," Foster says in response to a request for comment about the case. "Out of respect for the family and my client, it's inappropriate for me to comment."
Michael Grant, an attorney who represented the state ombudsman's office during the court case, testified the requirement to assist nursing home patients with eating applies.
He also said Oregon law does not allow guardians to give directions to withhold food. Guardians can consent only to the withdrawal of artificial nutrition and hydration, he testified.
"This is a sad situation. Everyone feels for the family," Grant said during the July 13 court hearing.
Fred Steele, agency director of the state Office of the Long-Term Care Ombudsman, says his office's mission is to make sure people in long-term care are treated with respect and their rights are protected.
"This is an extraordinarily difficult situation," Steele says of Nora's case. "This case highlights the difficulties of how we advocate for residents who can't communicate for themselves."
Steele says there is a legal question about whether advance directives can be used to express a wish not to be assisted with regular feeding.
"Advance directives don't usually address regular food. The advance directive form only speaks to artificial nutrition," he says. "This case is not dealing with artificial nutrition and that's the complication. It's an open legal question that might have to play out with the courts or the Legislature."
After the July 13 court ruling, Bill says he reached out for help from state Sen. Alan Bates, a doctor and longtime champion of health care issues in the Oregon Legislature.
Bates died of an apparent heart attack on an Aug. 5 fishing trip.
Advance directive changes needed?
Cheri Sperber, owner of the Ashland-based aging issues company Gray Matters Consulting, says she has prepared thousands of advance directives for clients, but the issue of assistance with regular eating hasn't come up until now.
"That's something I'm going to discuss now with my clients," she says. "That's something most people don't think about."
Sperber served as an expert witness for Bill in his attempt to stop the spoon-feeding of his wife.
She says Oregon Administrative Rules that require nursing facilities to provide patients with eating assistance are meant to prevent abuse and neglect.
"They get help so they're not just sitting there starving," Sperber says.
Sperber says advance directives cannot cover every possible scenario. But through her advance directive and conversations with friends and family, Nora made clear she wanted Bill to be able to make choices for her when she became incapacitated.
"What she told her family was if she couldn't feed and dress herself and was incontinent, that wasn't a life worth living," Sperber says. "Everybody is different and has a different threshold."
Oregon requires people who want an advance directive to use a standard form saying what measures they do and don't want. The form addresses "tube feeding," which it defines as food and water supplied artificially by a medical device.
The form does not address spoon-feeding or other types of eating assistance.
It has only four lines to write in special conditions and instructions not covered by the form.
However, Sperber says people can attach documents to the form spelling out their wishes more completely.
Nora's advance directive was prepared in California, and also only specifically addressed tube or intravenous feeding. She did initial a more generic instruction that she did not want her life prolonged and did not want life-sustaining treatment.
Betsy Rick, Nora's friend, says she now worries more people will have their advance directives overridden by Oregon Administrative Rules.
"It's worrisome because if an advance directive can't be followed, what's the point of having one? Bill has been valiantly fighting to champion Nora's rights," Rick says. "It brings up questions. Is this going to be the case everywhere in Oregon? I really feel for them. Nora is my longtime friend. I know it's not going the way she wished."
Nora's daughter, Anne Harris, says the situation has been extremely stressful for her father and the whole family.
"He wants to do what she wanted and he's being prevented from doing that. It's frustrating and heartbreaking that she has this horrible disease and her wishes have not been respected," Anne says. "It makes you sad that this is how the end of her life is going to go. That's what advance directives are for. That's what talking about your wishes is for."