Armond and Dorothy Rudolph had talked about their plans for more than a decade. They had a mutual horror of a lingering decline in their final years. They'd joined an organization that supports the right to end life when illness or pain becomes overwhelming; they'd attended meetings and given both their children literature on the subject. They'd drafted advance directives.
"Their great fear was that they'd end up in a nursing home," their son, Neil Rudolph, told me. "That was hell for them, to have people waiting on them, to have no independence."
As it happened, the elder Rudolphs had a long and satisfying old age in Albuquerque, N.M., where they lived for 60 years; they gardened and volunteered with the Boy Scouts and served as leaders in their Presbyterian church. When their large house and gardens became difficult to maintain, they built a smaller one in a neighboring town, then moved again to a retirement community.
http://newoldage.blogs.nytimes.com/2011/08/24/deciding-to-die-then-shown-the-door/?pagemode=printMrs. Rudolph had nursed her own mother through four years of bone cancer, he said. "She saw her mother die a slow, wasting death. She felt pinned down for years, and she felt guilty about feeling pinned down. She didn't want that to be our experience."
"At that point, some health issues began to emerge," their son said. Mrs. Rudolph broke her hip and was in and out of rehab, suffering frightening episodes of delirium.
"Dad had a permanent catheter," said Neil Rudolph. "Physically and mentally, they began to go downhill." In October, they entered an assisted living facility called The Village at Alameda, thinking it would be their last home.
The Rudolphs faced increasing pain and debility. Mr. Rudolph, 92, suffered from spinal stenosis; Mrs. Rudolph, 90, had become largely immobile. Both showed symptoms of early dementia. So in January, they set in motion their plan to stop eating and drinking.
Current management would not comment beyond an e-mailed statement saying that when a resident "requires alternate placement, medical attention, or a level of care beyond the facility's capabilities, we have an obligation to notify a medical provider." Fundamental Long Term Care, the firm that owns the facility and more than 100 others in 14 states, did not respond to requests for interviews.And the facility tried to evict the couple. The administrators, apparently on orders from the corporate legal department in Maryland, told the family the Rudolphs had to leave the next day.
As Neil Rudolph recalls the events, he protested that the couple — already on Day 4 of their fast — had nowhere to go. He also pointed out that their contract required 30 days' notice of discharge. The following day, administrators called 911, reported a suicide attempt and told the paramedics to take the elder Rudolphs to a hospital.
So much for the peaceful passage.
Voluntarily stopping eating and drinking — as the Rudolphs had learned from consulting with Compassion & Choices, the largest national organization working to expand end-of-life options — is a legal way to hasten death without drugs or violence, usually in about two weeks. In a survey of hospice nurses in Oregon, published in The New England Journal of Medicine in 2003, respondents reported that most of their terminally ill patients who had deliberately refused food and fluids had "a good death," with low levels of pain or suffering.
"They said, 'That's what we want to do,'" Neil Rudolph said, emphasizing that his parents' decision was hardly impulsive or caused by a bout with depression. He and his sister, Elaine Spence, and their spouses had come from Colorado to be with their parents and had called in a hospice organization. "We all discussed what it meant and whether they were sure," he said.
When his parents said they were, he helped them write a statement affirming their decision and then told the assisted living administrators about their plan.
Shortly thereafter, two emergency squads, from the Albuquerque Fire Department and Albuquerque Ambulance Services, converged on the scene. Neil Rudolph's wife called a reporter from The Albuquerque Journal, to whom the elder Rudolphs gave outraged and lucid interviews. The emergency crews soon called a doctor at the University of New Mexico's emergency medicine department, part of a consortium that consults when a 911 call brings a situation outside the norm — and this certainly qualified.
"They were stuck between divergent opinions and said, 'We need some guidance,'" recalled Dr. Drew Harrell, who was on call. He drove over to assist.
The standoff illustrates the legal tangle surrounding V.S.E.D., short for voluntarily stopping eating and drinking.
Under federal law, V.S.E.D. is indeed legal in every state, said Charles Sabatino, who directs the American Bar Association Commission on Law and Aging. "That a competent person can refuse any medical intervention, including tube feeding, has been recognized by the Supreme Court," he said.
It also is established in the federal Patient Self-Determination Act. Even a dementia diagnosis doesn't necessarily mean that someone lacks legal capacity to make that decision.
But, he added, "While the theory may be clean, the execution may get messy." Those who oppose the act for religious or ethical reasons (or fear of lawsuits) can throw up roadblocks.
New Mexico's Uniform Health-Care Decisions Act spells out an individual's right to stop eating and drinking, said Barbara Mathis, who helped draft the legislation and has taught at the University of New Mexico Health Sciences Center Institute for Ethics. "I would have been happy to go to court for no pay and get a temporary restraining order to keep the family from getting kicked out" she said.
It never came to that. Dr. Harrell spoke with everyone involved, including separate and lengthy bedside discussions with Dorothy and Armond Rudolph. "They were able to very appropriately and eloquently explain their wishes and what they wanted to have done," he said. "They didn't feel the need to go to a hospital. They detailed that they wanted control over their own end-of-life issues."
Reassured that they understood the ramifications of their decision, "I made a determination that our services were not needed," he said. The Rudolphs signed papers showing they had declined transport.
Worried about further conflict, their children transferred the Rudolphs to a rented house in Albuquerque and moved in themselves. Even with daily or twice-daily hospice visits, the round-the-clock vigil was exhausting — "but satisfying," Neil Rudolph said. "This was what they wanted, and we could help them carry it out." After slipping into unconsciousness, Mrs. Rudolph died first, 10 days after starting the fast; her husband followed the next day.
"They did find the dignified and peaceful death they both sought, but it's also a cautionary tale," Neil Rudolph told reporters in Denver last week.
He has launched a campaign with Compassion & Choices to inform people about voluntarily stopping eating and drinking. The organization is circulating a rider to assisted living contracts that states, in part, "Facility will respect Resident's end-of-life choices and will not impede any course of treatment, or non-treatment, freely and rationally chosen by Resident."
Paula Span is the author of "When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions."
