Right-to-die debate takes new turns in Vermont

By EVAN LAWRENCE

Contributing writer

The emotional questions raised by Vermont’s proposed death-with-dignity law have become somewhat familiar after a series of legislative debates over the past decade.

Should the terminally ill be able to choose the time and manner of their deaths? Should they be able to request assistance from a doctor? Would allowing them to do so harm other Vermonters?

Modeled on a law that has been in effect in Oregon since 1998 and was upheld by the U.S. Supreme Court, Vermont’s proposal would allow doctors to prescribe a lethal dose of medication to terminally ill patients who have made it very clear that they don’t want to wait for their disease to run its course. (Washington state voters approved a similar law in 2008.)

Backers of the proposal say no one should be forced to endure protracted suffering when they have no hope of recovering from an illness. Opponents say they fear vulnerable people could be pressured to end their lives against their will.

Vermont’s version of the right-to-die legislation was first introduced in 2002. It returned in 2007 and 2009, and supporters redoubled their efforts last year after Gov. Peter Shumlin, a Democrat then in his first term, indicated that, unlike his predecessor, he’d be willing to sign the bill if it reached his desk.

This year, the state Senate finally passed a version of the bill. But the bill that passed, S.77, is a drastically stripped-down version of the original. It’s not clear whether the House will come up with its own version in the few remaining weeks of the legislative session.

Choosing the right words

As frequently happens with topics that evoke strong feelings, the two sides in the right-to-die debate prefer different terminology. Opponents commonly describe the proposed law’s purpose as allowing “assisted suicide” or “physician-assisted suicide.” Supporters dislike those phrases.

“We don’t believe it’s suicide in the traditional sense,” said Monica Knorr of Manchester, who is vice president of Patient Choices Vermont, a statewide group pushing for the bill.

She also rejects the word euthanasia.

“In euthanasia, the physician ends the life,” Knorr said. “In our bill, the patient self-administers [lethal medication]. It’s OK if the patient has help breaking open the capsules and mixing them in a beverage, but the patient has to be able to hold the glass and swallow. That’s very important, so people aren’t forced.”

Similarly, Dick Walters, the president of Patient Choices Vermont, said he prefers the terms “death with dignity” or “physician-assisted dying.”

“I bristle at the word suicide,” Walters said. “It’s a pejorative word.”

But Carolyn McMurray of Arlington, one of the co-founders of the opposition group True Dignity Vermont, thinks suicide is the appropriate term.

“Taking one’s own life is suicide,” McMurray said.

Ed Paquin, president of the Vermont Coalition for Disability Rights, which opposes the bill, agreed with McMurray’s view.

“It’s a person taking a life, and it’s suicide,” he said.

The official title of the Senate bill uses more neutral language: “An Act Relating to Patient Choice at End of Life.”

Differing views of compassion

Whatever the preferred wording, both sides in the debate say they support hospice and palliative care, adequate pain relief, and patients’ right to refuse further treatment.

But supporters of the legislation say that allowing patients to die on their terms, rather than the terms set by their diseases, is simply the compassionate thing to do. In Oregon, nearly 81 percent of patients who take advantage of the state’s right-to-die law have cancer. The next largest group has amyotrophic lateral sclerosis, or Lou Gehrig’s disease, which slowly paralyzes the patient.

“I feel it’s a basic human right,” Walters said, citing his father’s painful death from a stroke.

Knorr’s interest in the issue was heightened by similar experiences.

“My father and mother-in-law had a slower, more tortured process than any of us would have wished,” she said. “When people have control, they’re able to live more easily in their circumstances.”

McMurray, on the other hand, recounted how the hospice intake nurse asked her dying mother if she would take enough of her pain medications to kill herself. McMurray said she quickly replied that she’d take care of her mother, and that her mother wouldn’t commit suicide. Her mother’s obvious relief convinced her that dying people “just want someone to take care of them,” McMurray said.

Paquin, of the Coalition for Disability Rights, acknowledged that people who support the right-to-die legislation “have compassionate reasons.”

“But the justification has shifted over time,” he said. “First it was pain, then dignity, then choice.”

Records from Oregon show that the chief reasons people seek to use the law are not intractable pain, but rather their loss of autonomy, enjoyment and dignity.

“The implication is strong to people with disabilities that to need help is not a dignified existence,” Paquin said.

He said he is greatly concerned that disabled people who were not terminally ill could be coerced into ending their lives so that other people would not have the burden or expense of caring for them.

Knorr said she is sympathetic to disabled people’s worries about coercion. But she pointed out that the Oregon law applies only to people with a prognosis of less than six months to live. People who are simply disabled or chronically ill don’t qualify to be given medications to end their lives.

Protecting vulnerable patients

The Oregon law requires patients to make three requests for a lethal prescription, two orally and one in writing. The written request must be witnessed by two people who are not family members or caregivers and have no stake in the patient’s estate. If the attending doctor has any questions about the patient’s mental health or competency, she must call in another doctor for a review.

McMurray said that despite these safeguards, “this is a recipe for elder abuse.”

She pointed to data from Oregon that she said raise questions about the deaths of patients who invoked that state’s law.

“How many of the people who took lethal medication were forced?” McMurray asked. “No one is required to be present [at a patient’s death]. Doctors accept the word of family members, caregivers or volunteers. … There’s too much that we don’t know.”

She pointed out that most doctors in Oregon refuse to become involved in deliberate deaths. Opponents say these cases put doctors in conflict with their professional imperative to heal.

Murray also suggested the law is unnecessary.

“Anyone really determined to commit suicide will do it” by overdosing on pain medication or through some other means, McMurray said.

Knorr said that may be true, but she proponents are concerned about “universality of access.”

McMurray claimed that in the Netherlands, where both euthanasia and assisted death are legal, 18 percent of assisted deaths fail. Oregon has reports of only three failed attempts since 1998, but McMurray said “no one has investigated” whether there have been other, unreported failures.

Walters countered that “in 15 years, no one in Oregon has been brought up on charges” related to the law. Opponents, he said, are inclined to think that people are “colluding in an inconceivable way” to cover up supposed abuses.

Financial incentives to die?

McMurray and other opponents fear financial pressures could prompt some patients to end their lives. She pointed to the difference in cost between a dose of lethal drugs and several months of hospice care.

“Who wouldn’t feel pressured?” she asked.

She said Oregon’s Medicaid program has informed some patients that the state wouldn’t pay for the treatment they sought but would cover medication for assisted suicide.

She also pointed to what she called “suicide contagion,” the idea that if some people are allowed to take their own lives, others will be more likely to do the same. Overall suicide rates in Oregon began to climb soon after assisted dying became legal in that state and have continued to rise, she said.

Also, predicting how long someone is likely to live isn’t an exact science. McMurray herself has survived two cancer scares.

State Sen. Richard Sears, D-Bennington, cited the case of the late U.S. Sen. Edward Kennedy, who continued to work in the Senate after his diagnosis of terminal brain cancer -- and who outlived his prognosis by several months.

Sears said he thinks a death-with-dignity law would discourage people from using hospice care.

“I believe strongly in hospice, and it’s underutilized,” he said.

According to the National Hospice and Palliative Care Organization, only 36 percent of eligible Vermonters took advantage of hospice care in 2010, placing it next to last in the nation.

But Walters said that’s not the case in Oregon.

“Which state in the country has the top rate of palliative care, is highest in hospice penetration, and has doctors who have educated themselves most effectively around end of life issues?” he asked. “It’s Oregon. This all evolved in Oregon subsequent to the passage of the law.”

Statistics from Oregon show roughly 85 percent of people who used the state’s right-to-die law were in hospice care. Almost all the others had the opportunity but chose not to enroll.

Laissez-faire approach

In this year’s legislative action, Sears, the chairman of the Senate Judiciary Committee, was against the original bill and voted it out of his committee only to keep a promise to Senate President Pro Tem John Campbell. But Sears and other opponents didn’t have enough votes to defeat it in the full Senate.

Then Sen. Robert Hartwell, D-Dorset, co-sponsored an amendment that reduced the bill to a simple offer of immunity to physicians whose patients deliberately took an overdose of prescription painkillers. Immunity would also be extended to family members and caregivers who did not intervene.

“I felt that the bill as it was introduced was very involved, overly complex, and would have led to a lot of government intervention,” Hartwell said. “I wasn’t sure that the right people were involved, and too many other people were involved.”

The right people to be involved in end-of-life decisions, he suggested, are family members or hospice and palliative care professionals.

Sears said he and his allies voted for the amended bill solely to prevent passage of the original bill.

“My preference would be to have no bill at all,” he said.

Sears said most health care professionals he heard from objected to it as an intrusion into the doctor-patient relationship. He said he was also concerned about the bill’s ramifications for people with disabilities.

State Sen. Peg Flory, R-Rutland, voted for the amended version of the bill.

“It removed the state from sanctioning doctor-assisted suicide,” she said. “Instead it allows for what’s in practice now.”

Some doctors, she said, are reluctant to prescribe enough painkillers for fear that patients will deliberately overdose, leaving their doctors potentially liable.

Flory said she opposed the original bill, however. The argument that loss of autonomy is an adequate reason to end one’s life “is a scary slope,” she said. “It assumes that there’s no dignity if someone can’t be productive.”

Another problem with the original bill, Flory said, is that it didn’t require the prescribing doctor to have an ongoing relationship with the patient. She contrasted that with the state’s medical marijuana law, which states that the prescribing doctor must have worked with the patient for a minimum of several months and must certify that the patient has had no relief with other treatments.

“I find it bizarre that we gave more safeguards for medical marijuana than for suicide,” Flory said.

If the state House of Representatives decides to take up the bill, lawmakers say, it probably won’t do so until mid- to late April, after it’s dealt with the state’s fiscal problems.

Is a Vermont Death With Dignity law really necessary? As of the end of 2011, only 935 people in Oregon had ever requested lethal prescriptions under the state’s then 13-year-old law, and 596, or a little more than half, had died as a result. That’s a very tiny percentage of the total number of the deaths in the state during that time.

Walters, of Patient Choices Vermont, sees the law as potentially driving “improvement to the whole continuum of end-of-life care, and the right to determine one’s own path in life.”

If nothing else, he said, the debate “has forced the issue to become polite conversation around the dinner table, and doctors to discuss end-of-life care with their patients.”