By Nell Lake
One sunny day in the spring of 2012, Kathleen Klein sat in a car by the California coastline with her 84-year-old mother, Jackie Wilton. The two women had been quietly gazing at the view, watching seagulls along the shore. “I’m ready to go,” Klein recalls her mother saying. “Not go home...Go.”
Klein didn’t need the clarification. Her mother had been speaking of wanting to die for years, ever since Wilton was diagnosed with an unspecified dementia a few years before. Wilton’s memory had become significantly impaired. But even before her diagnosis, Wilton was clear: She wanted to die before she became severely incapacitated.
Not long after the conversation by the water, Wilton asked Klein explicitly for help in ending her life. In interviews and a recent blog post, Klein remembers wanting to help her mother, but of being unwilling act illegally.
Even if Wilton had lived in one of the five states with an aid-in-dying law, she would not have qualified for such aid from a physician. That would have required a doctor’s determining that she would likely die within six months. Given the usual course of chronic, progressive dementia, Wilton would likely have lived much longer.
So Wilton needed another option for ending her life. Soon Klein heard a radio interview about "the possibility of helping someone die by letting them stop eating and drinking,” she wrote. “The way I understood it, it was the only legal form of assisted suicide.”
Klein mentioned the scenario to her mother. Wilton said she would think about it. A few days later, Wilton again mentioned wanting to die. “I asked her if she remembered the idea I had run by her. She didn’t, so I told her again. I suggested we give it a try (a ‘dry run,’ we called it) for a day and see if she wanted to continue.”
Wilton began the “dry run” on April 28, 2012.
No Food, No Drink
Most often referred to as VSED — voluntary stopping of eating and drinking — the practice of giving up food and drink in order to hasten one’s death is being increasingly publicized by aid-in-dying advocates as a legal alternative to physician-assisted suicide.
VSED is legal everywhere, even in states without aid-in-dying laws, and in cases in which a person, like Wilton, would not qualify for assistance with dying even in those states. Compassion and Choices, a leading “death with dignity” organization, is beginning to more actively promote VSED as an option because “it’s something that patients can openly pursue, in open dialogue with their physicians, with the support of hospice,” says Barbara Coombs Lee, the group’s director. "We do want to make it more public. We want to make it more visible because it upholds the truth that ultimately patients should be and are in charge. That’s kind of a consciousness-raising task.
Coombs Lee likens VSED to a patient’s decision to end a medical intervention such as kidney dialysis. A person with kidney failure may decide that she does not want to be kept alive by dialysis any longer. This patient may decide to discontinue dialysis treatments, in which case she would die of kidney failure. Similarly, Coombs Lee says, a very old or frail person could decide he doesn't want food and drink to keep him alive any longer. By foregoing food and liquids, this patient would die of organ failure from dehydration.
A Moral Thicket
Obviously there are ethical questions at play here.
Dr. Daniel Sulmasy, a professor of medicine and ethics at the University of Chicago, disagrees that VSED is equivalent to stopping dialysis. Sulmasy does support patients’ foregoing medical treatments in cases in which they no longer want such interventions to keep them alive. Ceasing life-saving interventions allows a disease to take its natural course, Sulmasy says. He also believes doctors should be more open to allowing patients to stop such treatments, with the support of palliative and hospice care.
But Sulmasy says that VSED is different — not morally the same as stopping medical interventions. Society needs, he believes, to “maintain the distinction between killing and allowing to die.” By allowing to die, he says, “we are desisting in an intervention that interferes with the natural history of a disease. [But] the person who has voluntarily stopped eating and drinking--they can [still] eat and drink. There’s no underlying physiological reason that the person can’t.”
VSED therefore amounts to suicide, Sulmasy believes, and to him that makes it unethical. “I don’t think that it can be morally distinguished from suicide if it’s done in a purely rational way. It’s a lethal, pathological state of wanting to make oneself dead.” Were VSED to become widely and publicly practiced, Sulmasy believes, it would shift our collective view of who deserves to live, eat, drink, receive treatments — it could degrade our view of human worth and medical care.
“Once this option is on the table publicly, the default switch changes. The question becomes: ‘Why haven’t you killed yourself yet?’”
In terms of practice, VSED is not new. There’s plenty of anecdotal evidence that ill people sometimes deliberately stop eating and drinking in order to hasten their deaths. In her book, “A Bittersweet Season,” Jane Gross writes of her mother’s dying through VSED. In 2011 an elderly couple, Armond and Dorothy Rudolph received much media attention after their assisted living facility evicted them for trying to end their lives by stopping eating and drinking.
What is new is the effort by right-to-die advocates to make VSED a widely accepted, publicly acknowledged option in end-of-life decision-making.
While the ethics of VSED may be debatable, its legality is well-established.
Suicide is generally not a crime in the U.S., and a mentally competent person has the right to refuse nutrition and hydration. VSED also qualifies a person for hospice support under Medicare rules. While the rules say that patients can receive hospice care only after a doctor has found that they’ll likely die within six months, even people who don’t meet this requirement are eligible for hospice once they’ve stopped eating and drinking.
This is because of a sort of logical tautology: VSED can engender hospice care because once a person has shown a commitment to dying through VSED, she is expected to die soon. Therefore she qualifies for hospice.
Doctors and aid-in-dying advocates emphasize that hospice care — the pain relief and comfort that hospice provides — is essential during VSED. Dehydration causes organ failure, which can be painful. A natural process called ketosis during VSED, a result of an impaired metabolism, may help prevent pain and even cause euphoria. With sufficient pain relief, hospice doctors say, the most troublesome symptom of VSED is dry mouth, which can be relieved through mouth swabs and other oral care. Hospice workers may also sedate a patient if he or she requests this.
Few statistics are available on the practice’s prevalence. It’s difficult to track, in part, because death certificates tend to attribute death to underlying, terminal illnesses rather than to VSED.
A 2003 study in the New England Journal of Medicine sought to shed light on VSED by surveying 307 Oregon nurses who had worked with patients enrolled in hospice. The study found that a third of the nurses had experience in the previous four years with patients who died of VSED. This finding seemed to show that even in a state with an aid-in-dying law, VSED deaths were nearly twice as common as deaths from physicians' prescribing lethal medication.The report gave a rough sense of the frequency of deaths from VSED among those already in hospice.
The study also asked the nurses to evaluate the quality of the VSED deaths. The nurses’ average score was 8 on a scale of 0 (a “very bad death”) to 10 (a “very good death”). Eighty-five percent of the patients described by the nurses died within 15 days of stopping food and drink.
In her blog post, Klein describes the days during which her mother gradually reduced the amount she ate and drank. Wilton became weaker and spent more time in bed. Eventually she stopped eating and drinking altogether. A hospice service stepped in and helped with pain relief. On day nine, Wilton “went to sleep for the last time,” Klein wrote. Her mother became unconscious. “We gave [my mother] morphine around the clock, according to hospice guidelines. We told her how much we loved her and that we would miss her terribly but we were letting her go.”
A 'Good' Death But 'Surreal'
On the 13th day after beginning the “plan,” Wilton died.
Klein says feels good about the manner of her mother’s death. Klein is proud of the help that she gave. She does wish she’d received more support herself during the process. She has written publicly about her mother’s death, she says, in part to offer such support to others and to demonstrate that VSED is a workable option. “It was an experience I had never had before, and never could have imagined,” she says.
The experience of supporting her mother through VSED felt “surreal.” She says she repressed her own emotional reactions in order to go through with a difficult plan. Had she known others who’d followed the same process, had she received helpful advice, she believes she would have worried less. But “I didn’t know how to find anyone who had been in a similar situation,” she says.
Compassion and Choices hopes to change that. The organization offers resources on its website and a help line (800-247-7421) for those seeking more information about and support for voluntary stopping of eating and drinking.
Nell Lake, a journalist and magazine writer, wrote the new book, “The Caregivers: A Support Group’s Stories of Slow Loss, Courage And Love” in which she chronicles the lives of family caregivers over two years. She lives in Western Mass.