Hemlock Society & Foundation of Florida

Right to choose fatal fast is tested

Armond and Dorothy Rudolph had long ago drafted directives declining life-sustaining treatment in the case of fatal and irreversible illness. However, those plans were put to the test by an assisted living facility.

By PAULA SPAN
The New York Times

Armond and Dorothy Rudolph feared a lingering decline and prolonged suffering in their old age, so they joined an organization that supports the right to end life when illness or pain becomes overwhelming. They attended meetings and drafted advance directives declining life-sustaining treatment in the case of fatal and irreversible illness. They gave their children literature on the subject and discussed their plans with them.

But years later, when the couple finally opted for an exit from this life, it all fell apart. After the Rudolphs began refusing nourishment, the assisted living facility in Albuquerque, N.M., in which they lived tried to evict them. When the family balked, the managers called 911 and tried to have the elderly couple transported to a hospital.

The Rudolphs did leave the facility, and they died in a rented house surrounded by their children and cared for by hospice workers. Now their case has become a rallying point for those who support self-determination at the end of life, and it has raised thorny questions about the rights of residents in assisted living facilities and society's deep unease with hastening death.

"Their great fear was that they'd end up in a nursing home," said their son, Neil Rudolph, a retired chemistry professor in Alamosa, Colo. "That was hell for them, to have people waiting on them, to have no independence."

As it happened, the Rudolphs had a long and satisfying old age in Albuquerque. They gardened, 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.

Eventually they moved again to a retirement community. But, said their son, "physically and mentally, they began to go downhill."

In October, they entered an assisted living facility called the Village at Alameda. Armond Rudolph, 92, suffered from spinal stenosis; Dorothy Rudolph, 90, had become largely immobile. Both showed symptoms of early dementia.

In January, they set in motion their plan to stop eating and drinking. The practice is a legal way to hasten death without drugs or violence, usually in about two weeks.

Nobody knows how many people choose to end their lives this way. But a survey of hospice nurses in Oregon, published in The New England Journal of Medicine in 2003 (http://www.nejm.org/doi/full/10.1056/NEJMsa035086), found that most of their terminally ill patients who deliberately refused food and fluids had "a good death," with low levels of pain or suffering.

Neil Rudolph, his sister and their spouses arrived from Colorado to be with the elder Rudolphs and 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.

The administrators told the family that the Rudolphs had to leave the next day, he said.
Managers at the facility declined to be interviewed but said by email 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 company that owns the facility and more than 100 others in 14 states, did not respond to requests for interviews.

"This is the first time that we've heard of a situation like this," Karl Polzer, senior policy director for the National Center for Assisted Living, said in an email. "It is important that assisted living communities have the right to choose whether this type of course of action is consistent with their philosophy and values."

Neil Rudolph protested to administrators at the Village at Alameda that his parents, 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 next day, the administrators called 911, reported a suicide attempt and told the paramedics to take the elder Rudolphs to a hospital. Emergency squads from the Albuquerque Fire Department and Albuquerque Ambulance Service, arrived. Not sure what to do, they 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.

Their confusion illustrates the ambiguity surrounding VSED, short for voluntarily stopping eating and drinking.

Under federal law, VSED is 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.

The right also is established in the federal Patient Self-Determination Act. Even a dementia diagnosis doesn't necessarily mean that someone lacks legal capacity to decide to stop eating and drinking, legal experts say.

Yet exercising this right can be difficult. "While the theory may be clean, the execution may get messy," Sabatino said. A facility with a religious affiliation may object; workers may become uncomfortable; courts or law enforcement may choose to get involved.
The physician arriving from the University of New Mexico, Dr. Drew 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," 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, relatives transferred the Rudolphs to a rented house in Albuquerque. 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, Armond Rudolph died first, 10 days after starting the fast; his wife followed the next day.

"They did find the dignified and peaceful death they both sought," Neil Rudolph recently told reporters. "But it's also a cautionary tale."

Compassion & Choices, a group that advocates for expanded end-of-life options, is circulating a rider that can be appended to assisted living contracts. It 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."

The National Center for Assisted Living has said it intends to meet with Compassion & Choices to discuss the matter.

 

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