Do Utahns have the right to choose how they die?
Helmuth and Frances Fluehe died peacefully in their late 90s. But the journey to their final breaths involved agonizing pain, indignity and great expense, common death experiences in America that the couple's two sons hope fervently to avoid.
"I was lucky to have my parents as healthy as they were for as long as they were," says Paul Fluehe.
Yet near the end, he says, both his parents said they prayed to go to sleep and not wake up. And while both had signed documents guiding their medical care called advance directives, he says, "they didn't feel they had the right to choose their own time."
Had they been interested, the Fluehes didn't have the option to legally obtain a lethal dose of sedative drugs through a doctor. Only Oregon, Washington and Montana allow doctors to legally write such prescriptions for the terminally ill, under certain circumstances. Patients decide when or whether to take the drugs.
Activists and lawmakers in several other states are pursuing similar laws. But the organization most active in getting Oregon's law passed is also focusing on a method it says is legal everywhere: VSED, or voluntarily stopping eating and drinking.
Compassion & Choices maintains that forgoing food and water while receiving comfort care and pain medication is a natural way to die at home, says Barbara Coombs Lee, the group's president. A former nurse and physician's assistant, Coombs Lee became an attorney and guided Oregon's Death With Dignity Act through the courts.
But lawyer Maureen Henry, executive director of the Utah Commission on Aging and author of Utah's advance-directive statute, says VSED is neither legal nor illegal in the Beehive State.
"It's not correct to say that anyone can stop eating and drinking," she says. "It's more complicated than that."
The catalyst • Compassion & Choices took up its VSED campaign, "Peace at Life's End. Anywhere," after a New Mexico assisted-living facility early this year evicted a dying elderly couple. Armond and Dorothy Rudolph had decided they would refuse food and water at the end of their lives, and they did so in their early 90s when their pain and frailty became unacceptable to them.
The Rudolphs, who learned of VSED from Compassion & Choices, were on the fourth day of their fast when facility administrators called 911 to report suicide attempts. After two emergency squads responded, an emergency room doctor interviewed the lucid couple and decided they didn't need his services.
Dorothy Rudolph died 10 days after starting her fast, and Armond Rudolph died the next day in a New Mexico house their son rented for them, according to The New York Times and other news reports.
Coombs Lee said Compassion & Choices, based in Portland, Ore., often gets calls from people who are thinking about the end of their lives.
"Everybody has a worst nightmare. A lot of people are comforted by having a frank discussion," she says. "We are candid. We are nonjudgmental."
Multiple court tests have found a dying patient's choice to stop eating and drinking can be ethical and legal. The argument rests on the premise that any unwanted touching is battery. Supreme Court rulings have found constitutional guarantees for a person's right to refuse life-sustaining treatment.
Yet not all patients fit neatly into this analysis, Henry warns.
Making the decision • What if a mentally ill person thinks God is telling him not to eat or drink?
Or what if an elderly woman becomes delirious when she has a urinary tract infection? If she refuses food or water, do you comply or do you treat the infection?
"[If] you cure her," Henry says, "she may well say she does want food and water."
It is difficult for people to predict what they will want in the future, Henry adds.
"They get a diagnosis and say, 'I never want to be kept alive if someone has to bathe me, if someone has to spoon-feed me,' " she says. But as time goes by, "they tend to want more care than they did at their diagnosis."
Debbie Thorpe, an advance-practice nurse who specializes in pain and palliative care at the Huntsman Cancer Institute in Salt Lake City, says many patients ask for a speedy death but change their minds when they get comfort care.
When Michael Galindo, a physician and director of palliative care for LDS Hospital and Intermountain Medical Center, considers the Rudolphs, he finds overtones of a suicide pact. If people actively decide to stop eating and drinking, he says, "the first thing I would be concerned with would be depression."
Such a deliberate decision should be made as part of a doctor-patient relationship that includes advance directives and orders that spell out a patient's end-of-life choices, Galindo says. Without that context, Galindo says, it is suicide.
Coombs Lee says otherwise. "Suicide is impulsive," she says. "It's usually done in isolation and anger. It's a manifestation of pathology."
Suicide is rightly illegal, she adds. That is why death with dignity advocates in Oregon, Washington and Montana don't use the term "assisted suicide" because that implies a direct killing, such as the injections Michigan physician Jack Kevorkian administered to his patients. But she agrees that long before people are terminally ill, they should make sure their doctor knows what they want when they are dying.
"That knowledge frees us to enjoy life to the fullest every day," she says. "That's our goal."
Henry says every adult from age 18 on should craft advance directives. The single most important step, she says, is to find someone you would want to make decisions for you if you were unable to speak for yourself.
"They stop eating." • From a medical standpoint, there are times when it is reasonable to honor a patient's choice to decline food and drink, Galindo says.
And a very ill 90-year-old may simply find eating and drinking too burdensome. "That's what people do when they are terminal," Galindo says. "They stop eating."
Conversations with hospice patients about nutrition and hydration are common, especially what professionals call "breakpoint" talks specifics about the physical process of dying, including what it's like to stop taking sustenance.
In her experience, Thorpe says, patients don't specifically say they want to stop eating and drinking they just do.
"That's such a natural thing; it's not usually an intentional withdrawal," she says. And sometimes, patients want food in their mouths just so they can taste it ice cream, a tortilla even though they can't swallow it.
There also is the fact, Galindo says, that pushing nutrition at the end of life doesn't do much good anyway.
"It ends up being a couple of cans of Boost. It really isn't enough," he says. "The disease really is in the driver's seat. From food preparation all the way to elimination, [eating] can be so burdensome it's no longer worth it."
This is where hospice comes in, to keep patients comfortable and let them manage their lives as well as they can.
Life at the end • Here is what happens when a terminal patient goes without food and water.
She dies not of starvation, but dehydration. Her kidneys most likely shut down. Her lungs and tissues fill with fluid and toxins the body no longer can excrete; this severe edema is painful.
"If someone has problems with nausea, having food in the stomach is going to make that worse," Galindo says.
The patient typically loses consciousness in two or three days and dies within one to two weeks when the lungs and heart cease working.
Thirst, dry mouth and cracked lips can be alleviated with mouth swabs or small sips of water. One of the body's compensatory reactions when a person nears death is endorphin release. Pneumonia may speed the end.
"This isn't something that should be done in a back bedroom of an apartment without help," Galindo says. "Nobody should ever stop eating and drinking without hospice."
Compassion & Choices says "success" with VSED requires support from family or other caregivers, plus palliative care for pain. Rarely are pain and other symptoms so unmanageable a patient can't get relief, Coombs Lee says.
Studies have shown hospice patients end up living longer than those who continue to fight an attitude Dan Hull, executive director of the Utah Hospice & Palliative Care Organization, finds very American.
"Our whole life is a struggle to keep doing it. Always winning, always achieving, always being first in the world," he says. When someone says he wants to die, "society doesn't like that," Hull says. "We don't want to let them have control. If dying is only a matter of weeks, then choice is really critical. I think we have to figure that out a little better."
Patients have asked Hull if he could give them a blessing to die. Patients, relatives and loved ones have asked for ways to make the end come faster.
He once had a patient who lived two weeks without any food or water, and her daughters asked how to help her die. Hull told them to leave their mother alone for an hour. She died.
Compassion & Choices' VSED campaign may be "the outlier that pushes us along," Hull says. "[Patients] may never use the choice, but it gives them one. If one says, 'I don't want more chemotherapy,' and one says, 'I don't want to eat or drink,' if they both have terminal illness, what's the difference?"
Dying and dignity • Helmuth Fluehe died at age 97 in September 2009.
His legs failed and he had severe dementia. A man who hadn't ever in his life feared anything "lost his capacity to deal with any adversity at all," Richard Fluehe says. "To watch this guy disintegrate was really tough. He had intestinal blockage, his intestines tied up in knots, in tremendous agony."
Frances Fluehe died at 98 in September 2010. She endured painful care for a prolapsed rectum. "It was kind of horrendous to be out in the hallway and hear her screaming while they were taking care of that," Paul Fluehe says.
Both parents received hospice care in their last days; both died of sepsis.
They had not made end-of-life plans with their sons or anyone else, though their advance directives included do-not-resuscitate orders. The brothers say their parents suffered and wish they had died sooner.
Now, Paul Fluehe says the right to die with dignity is on his mind all the time.
"I just don't think people ought to suffer," he says.
The brothers expect to choose their deaths. "There's going to be no heroics with either of us," Richard Fluehe says.
Both say they mean to write valid advance directives. Neither has.
A Portland, Ore.-based organization, Compassion & Choices, is saying that even without Death With Dignity laws, people can legally choose the time of their death by stopping eating and drinking. The group, which also has offices in Denver and Washington, D.C., is promoting a campaign called Peace at Life's End. Anywhere.
In Utah, there is no law governing such a choice, which some experts and physicians say happens naturally, anyway.
The Utah Legislature has passed bills governing how state residents can take responsibility for the end of their lives, detailed in a state Kit for Advance Health Care Planning.