Vermont adjusts to new way of dying

Terri Hallenbeck | The Burlington (Vt. ) Free Press

BURLINGTON, Vt. -- Dr. Diana Barnard recalls a patient of hers, a woman who was dying from a progressive disease. What the woman really wanted was to live and see her young children grow up, but given the reality of her illness, she hoped to die at home.

Instead, she spent her final months in a long-term-care facility.

"It was so distressing to her. She would have traded for a peaceful death in her own home with her children around her," said Barnard, an assistant professor of family medicine at the University of Vermont College of Medicine and an attending physician on Fletcher Allen's palliative care service.

A new Vermont law that took effect May 20 might have allowed such a patient to have her wish. Any day now, a terminally ill patient in a similar situation in Vermont could ask a doctor to prescribe a lethal dose of medication to hasten his or her own death.

No doctors have reported writing such a prescription yet, according to the state Health Department, but health professionals across Vermont are preparing for how they will respond when a patient asks. Gearing up for that moment is proving to be a challenge.

Doctors, nurses, hospital officials and others are sorting through a mountain of questions as the new law presents a fundamental change in the way they do business. Among the challenges are last-minute legislative changes that took Vermont's law into uncharted territory.

"There's a lot of unanswered questions," said Dr. Stephen Leffler, chief medical officer at Fletcher Allen Health Care in Burlington. He has pored through the law, read up on similar measures in Oregon and Washington and turned to doctors there for advice. "We feel it's important to do this in a thoughtful, comprehensive way to make sure we meet the intent of the law."

The law took effect immediately when Gov. Peter Shumlin signed it in May, so most of those questions have yet to be answered. Health care providers are trying to come up with policies. Doctors are debating whether this is a welcome option or runs counter to their medical training. The Health Department still is writing guidelines, though it recently completed forms for patients and physicians to use.

Leffler estimated he's spent about a quarter of his time on the topic in recent weeks: "It's been a topic at the water cooler, at the bagel bar. And I've been making the rounds to the offices most likely to be involved in this and hearing a lot of questions and opinions."

The Fletcher Allen medical staff will vote, perhaps in October, about whether the state's largest hospital should allow patients to ingest a lethal dose in the facility. That decision, Leffler said, is relatively simple as hospitalized patients are less likely to meet the qualifications that include being able to self-administer the drug. The vast majority of users in Oregon and Washington have taken the medication at home.

The real issue, Leffler said, is preparing doctors for how to respond to patients who want the prescription to end their lives at home. Doctors may choose to participate or may opt out, but either way, they will need to know how to go about it, Leffler said. He said doctors are telling him, "If we're going to do this, we want very, very clear guidelines, which we don't have yet."

Dick Walters of Shelburne, president of the organization Patient Choices Vermont, which sought the law for a decade, said he understands that providers want to be thorough and careful as they become used to the new law. "They're doing their due diligence," Walters said. "As this becomes more familiar, it's going to be much easier for them."

Walters said he expects the national group Compassion & Choices will soon have staffing in Vermont to provide help for patients and physicians navigate the process and weigh all their options. The group has experience nationally and will be well-versed in Vermont's law, he said.

For now, though, the law ushers in a huge change for a wide range of medical professionals. It will affect doctors who might be doing the prescribing, pharmacists who might be asked to fill a prescription, hospice nurses who might be there when patients take the medication, and paramedics who might be called if something goes wrong, to name a few.

Leffler, who works as an emergency room doctor along with his administrative duties, is among those troubled by the practice — even as he is preparing to help others enact it.

"It goes against the Hippocratic oath that says we're here to help people," he said. "We sustain people's lives. This is actually giving a medication for the express purpose of causing death."

Dr. Harry Chen, Vermont's health commissioner and a former emergency room doctor in Rutland, has a different viewpoint.

"Understanding that this is a terminal patient who is going to die, this is as much as anything helping them to decide under what circumstances they want to die," Chen said. "Having seen a lot of people die, some of them peacefully, some of them not at all peacefully, I can understand why some people would want this. I support that."

Backers of the new law say it will foster more extensive conversations between patients and doctors about what patients want at the end of life and about what they fear.

"I really believe it's a tremendous opportunity to talk about something that we have trouble talking about, which is dying," said Barnard, a doctor who pushed for the law in Vermont. "A law like this will really empower patients to say, 'This is what I want.'"

Vermont's law

The gist of Vermont's law is similar to Oregon's and Washington's. Among the requirements, patients must:

• Have the ability to self-administer the medication.

• Be capable of making sound decisions and at least 18 years old

• Have a doctor's diagnosis of a terminal illness with less than six months to live.

• Make multiple requests, with specified waiting periods in between, and be given the chance to rescind the request at any time.

Physicians and those in attendance at the death are granted immunity from criminal prosecution if they follow the rules.

Walters said he's received inquiries from potential patients about how the law works, but he knows of none who have made the full request for medication. He said he's referred those inquiries to the Compassion & Choices national help line and to the Vermont Ethics Network, a nonprofit group that focuses on end-of-life care.

Cindy Bruzzese, executive director of the Vermont Ethics Network, has amassed information about the new law and posted it on the group's website. She discovered a heap of complexities.

Because Vermont's Patient Bill of Rights requires doctors to tell patients about all legal options available, physicians will have to tell terminally ill patients that this law is available even if the doctor chooses not to participate in writing prescriptions, Bruzzese said. Doctors will have to find tactful ways to do that, she added.

The silver lining, she said, is the new law should increase conversations between patients and doctors.

"My hope is we end up doing a better job of advanced planning. I hope we'll see referrals to hospice sooner," she said.

Decisions to be made

The law permits health-care facilities to opt out of allowing patients to take the lethal dose of medication on-site. Fletcher Allen, Brattleboro Memorial Hospital and Grace Cottage are among the hospitals that have opted out temporarily while studying the matter.

Leffler, at Fletcher Allen, said he is more concerned about helping the hospital's doctors navigate the new law for patients looking to hasten their deaths at home. He expects primary-care physicians and cancer doctors to be among those with patients who might request the medicine.

"The provider can say, 'I'm not going to do that, but I'm going to refer you to someone who does,' or the provider can say, 'I'm going to help you do this.' If the provider chooses that, we have to have some programs in place to help them," Leffler said.

The most important advice he's gleaned from Oregon, he said, is that it's a good idea to have a social worker assigned to patients who are using the new law.

"There's a lot of steps that have to be followed to make sure you've done this correctly," Leffler said. "It's going to take someone who's an expert in the law."

Nothing in the law dictates what the medication should be that doctors prescribe, and Leffler said doctors will need to settle on that. In Oregon and Washington, secobarbital or pentobarbital are used.

Decisions also face other types of health-care providers in Vermont, including hospice providers for whom the law runs counter to their current way of doing business.

"There's a lot about the law that is gray and unknown," said Angel Means, director of the End of Life Division of the Visiting Nurse Association of Chittenden/Grand Isle Counties, which runs the Vermont Respite House and provides in-home hospice services.

The agency recently decided against allowing patients who are staying in the Respite House to use the new law on-site, Means said, because it would affect everyone in the house.

Means said she worries that the new law will confuse people who already sometimes mistakenly believe hospice is just there to administer morphine to terminal patients.

"This kind of law doesn't help with that," Means said. "Our treatment process is very life-affirming, doing nothing to hasten death, focusing very much on quality of life and extending that good quality of life as long as possible."

Pharmacists also will have to decide whether they will provide the medication. "This does leave a moral dilemma," said James Marmar, executive director of the Vermont Pharmacists Association. He said he's known pharmacists who won't stock condoms or morning-after pills, and this could fall along those lines.

As manager of the Woodstock Pharmacy, Marmar said if a patient had a doctor's prescription for the medication, "I would feel obligated to provide it. It's been working in Oregon, and they haven't repealed the law."