How ‘death with dignity’ laws allow terminally ill patients to take back control — sometimes at a price

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Rick Miller developed trouble breathing and a persistent cough in early 1999, and later learned he had small-cell lung cancer. Among the first words he uttered after receiving his diagnosis, according to his wife, Nora Miller, were, “I’m definitely going to use the Oregon law.”

He meant Oregon’s Death with Dignity Act, enacted in 1997 to allow terminally ill patients self-administer lethal prescription medication to end their lives. Rick Miller, 52, tried experimental chemotherapy treatments that summer to no avail, and additional treatments in the following months, but his condition continued to deteriorate.

‘It is not up to the government to decide who may die and who may live, when they shall die or how long they shall live.’

—Janet Mills, Governor of Maine

He entered hospice in October, and set about fulfilling the oral and written requests the law mandated to obtain an end-of-life prescription. Nora Miller was tasked with picking up the prescription, paying $275, she recalled, or around $420 today adjusting for inflation.

On Nov. 9., 1999, after a visit from his sister, Rick Miller decided it was time. Late that night, he ingested the powder from dozens of Seconal capsules, mixed into applesauce to mask the taste, as well as two other medications to ease the process. He died Nov. 10.

“I’ve never regretted it,” Nora Miller, 69, of Portland, told MarketWatch. “It was what he wanted.”

Similar laws have passed in a handful of states over the past two decades, including, most recently, Maine’s Death with Dignity Act. The new Maine legislation, signed into law last week by Democratic Governor Janet Mills, will also let qualifying terminally ill people obtain prescription medications to end their lives. The District of Columbia, California, Colorado, Hawaii, New Jersey, Vermont and Washington also have such laws on the books.

Mills defended the new law against criticism that physician-assisted dying is immoral. “Some argue that enactment of [the Maine Death with Dignity Act] equates to the government authorizing taking life, or ‘playing God’ with the lives of our citizens,” she said in prepared remarks.

Maine’s law will apply to legal adults with a terminal disease that will result in death within six months.

“It is not up to the government to decide who may die and who may live, when they shall die or how long they shall live. It is our duty to provide the most comprehensive end of life care possible, a task we have only recently begun to recognize.”

Some 58% of doctors say physician-assisted dying should be legalized for terminally ill patients, according to a 2018 Medscape survey of more than 5,200 physicians. The general public is slightly more in favor, with 65% of Americans in a 2018 Gallup poll voicing support for “doctor-assisted suicide.”

Maine’s law will apply to legal adults with a terminal disease, defined as an irreversible and incurable disease that will result in death within six months. It requires a written request plus two oral requests, two waiting periods, a consulting physician’s second opinion and a psychological evaluation by a professional. The counselor must first confirm the patient’s judgment isn’t impaired by depression or another psychological or psychiatric disorder.

Courtesy of Nora Miller

’I’ve never regretted it,’ Nora Miller said of her husband’s decision to choose to end his life.

Costs of assisted-death drugs have climbed into the thousands

Doctors have worked to create affordable alternatives to the barbiturate Seconal, which has become prohibitively expensive, but the cost of assisted death can still be burdensome for those who seek to end their lives.

The drugs of choice, which are determined by prescribing physicians rather than by law, have changed over time — and they vary in price. Today, the recommended protocol is a four-drug cocktail of diazepam (Valium), the painkiller morphine, the heart medication digoxin and the antidepressant amitriptyline, which costs around $700 to $750, said Robert Wood, a retired internist who has worked with the Seattle-based organization End of Life Washington for nearly a decade.

Doctors have explored alternatives to Seconal, which has become prohibitively expensive for use in assisted death.

Pentobarbital, a barbiturate sold under the brand name Nembutal, has become near-impossible for Americans to access since its manufacturer, Lundbeck, sought to prevent the drug’s use in executions in 2011 and the European Union moved to prohibit its export. It cost $350 on average between 2012 and 2014, according to a 2017 JAMA Oncology study of aid-in-dying prescriptions in Seattle.

And secobarbital, known by the brand name Seconal, was in wide use until recently. The Canadian company Valeant Pharmaceuticals (which rebranded as Bausch Health BHC, +6.21%   in 2018) acquired the rights in 2015, drawing outrage after it hiked the drug’s price into the $3,000 range.

Seconal’s average price rose from $388 in 2010 to $2,878 in 2016, according to the JAMA Oncology study. And doses after the acquisition could cost as much as $5,000, according to an estimate by the Death with Dignity National Center, a Portland, Ore.-based nonprofit.

Bausch Health, then Valeant, issued a statement in 2016 explaining that it “sets prices for drugs based on a number of factors” and maintaining that Seconal was “indicated for short-term insomnia, epilepsy, and pre-operative anesthesia.” “If it is being prescribed for off-label uses, it is not something for which the product is manufactured or intended,” the company said, noting it had only sold about 1,000 units of the drug since the acquisition.

Today, the recommended protocol is a four-drug cocktail of diazepam (Valium), morphine, the heart medication digoxin and the antidepressant amitriptyline.

Lisa Vigil Schattinger’s late stepfather, Jack Rowe, obtained a Seconal prescription in Oregon in 2014 for $1,800 out of pocket, she told MarketWatch, and paid a combined $65 for two other drugs that would prevent vomiting. The 73-year-old retired neurologist had a bone-marrow disorder that would take his life within six months, and had endured several other serious illnesses in recent years.

Rowe, known to his family as Grandpa Jack, decided soon after his diagnosis that he would hasten his death using the Oregon law, Schattinger said. He drank the medication mixture in his bedroom on Nov. 11, 2014, surrounded by loved ones as his favorite classical guitar music played.

“He didn’t want to suffer,” Schattinger, 51, a registered nurse and aid-in-dying advocate in Cleveland who sits on the Death with Dignity National Center’s board. “I think he honestly just felt empowered to be able to say, ‘I’ve got this control, and it gives me tremendous peace of mind that I’ve got this option.’”

Courtesy of Lisa Vigil Schattinger

Lisa Vigil Schattinger (second from right) with her stepfather, Jack Rowe (second from left).

But Seconal supply has dwindled in the years since the price hike, advocates in Portland and Seattle told MarketWatch, and the drug is now largely unavailable. “We’re optimistic that it will become available again; we just don’t know when,” Arline Hinckley, a social worker and board member for End of Life Washington, told MarketWatch.

(A Bausch Health spokesman did not return a MarketWatch request for comment on whether the Quebec-based company still manufactures the drug, though a listing for the product remains on its website.)

Doctors scrapped a mixture of the anti-seizure drug phenobarbital, morphine and the sedative chloral hydrate, which produced burning in the mouth.

After Seconal’s price became prohibitively expensive for many people, a group of physicians in Washington state convened in 2015 to find a cheaper mixture of medications that compounding pharmacies could prepare to suit the same lethal purpose, said Wood, who led that group.

The doctors scrapped an initial combination of the anti-seizure drug phenobarbital, morphine and the sedative chloral hydrate, the latter of which produced burning in the mouth and throat, Wood said. In 2016, they tried mixing diazepam, the beta-blocker propranolol and morphine, later adding digoxin to reduce the large span of time some patients experienced between ingestion and death. They increased the drugs’ doses in February 2017, and earlier this year adopted the newest protocol.

“It is an evolution,” said David Grube, the national medical director for the end-of-life organization Compassion and Choices, who wrote prescriptions for medical aid in dying from 1999 to 2012. “Doctors and researchers tried to come up with the protocols [that] would be effective, and yet at the same time not take too long and be very easy for the individual to ingest.”

Even the lower price tag can pose a barrier to some people, Hinckley said. She said insurance coverage of the protocol drugs in Washington can be “hit or miss” depending on a person’s insurance provider and policy. “Some insurance companies pay for it and others don’t,” agreed Peg Sandeen, the executive director of the Death with Dignity National Center.

Some also find that their local doctors are unwilling or unable to practice medically assisted death — an obstacle that can rack up added costs.

Some also find that their local doctors are unwilling or unable to practice medically assisted death — an obstacle that can rack up added costs, especially if the law requires they make multiple requests for a prescription in person.

Christine Whaley, 42, a terminal melanoma patient in San Luis Obispo, Calif., who chose to die on Aug. 25, 2018 with California’s End of Life Option Act, could have saved around five days and $2,000 in travel and lodging costs had a local doctor cooperated, said her 40-year-old husband, Tom Whaley.

Instead, they had to make the three-and-a-half hour drive to UCLA’s medical center. “It [was] quite taxing on her, because at that point she was very weak,” Tom Whaley said. “But she wanted it enough that we made that trip.”

She faced another hurdle that May after a Riverside County judge overturned the state’s aid-in-dying law, though a state appeals court stayed the ruling in June and the law was reinstated. The couple paid around $140 out of pocket for what Tom Whaley described as a high-dosage “compound mixture of narcotics” whose names he couldn’t recall, with her MediCal insurance covering a portion of the cost.

‘She wanted to set a path for other people who didn’t maybe have the strength or resources to go through with this … people who weren’t as privileged.’

—Tom Whaley on his late wife Christine, a terminal melanoma patient who chose to end her life on Aug. 25, 2018

Days before her death, Christine Whaley would share her story with a reporter and photographer from her local paper and insist on “clearly showing her head bandages and the full extent of her illness,” according to an editor’s note in The Tribune.

“She wanted to set a path for other people who didn’t maybe have the strength or resources to go through with this … people who weren’t as privileged, or didn’t have the knowledge or the strength to fight for how long she did to go the way she wanted to go,” Tom Whaley said.

Courtesy of Tom Whaley

Christine Whaley, 42, wanted to be open about the full extent of her illness, terminal melanoma.

There’s limited, mixed evidence, meanwhile, on whether assisted dying would cut down on health-care costs. One 1998 New England Journal of Medicine study estimated that legalizing physician-assisted dying among cancer patients receiving conventional care could yield cost savings of about $627 million in 1995 dollars, but noted that would be less than 0.07% of total health-care expenditures.

“What is true on a national scale is also likely to be reflected in the potential savings for individual managed-care plan,” the study concluded. “Physician-assisted suicide is not likely to save substantial amounts of money in absolute or relative terms, either for particular institutions or for the nation as a whole.”

A far more recent 2017 analysis in the Canadian Medical Association Journal, meanwhile, used data from Belgium and the Netherlands to estimate that medically-assisted dying could decrease Canada’s annual health-care spending by anywhere from $34.7 million to $138.8 million. (The policy would cost $1.5 million to $14.8 million to implement, it added.)

“Providing medical assistance in dying in Canada should not result in any excess financial burden to the health care system, and could result in substantial savings,” the authors wrote.

Courtesy of Tom Whaley

Christine Whaley and Tom Whaley.

Others warn ‘inexpensive’ assisted-death drugs could be used to reduce health-care spending

The American Medical Association maintains that the practice would do more harm than good, stating that it’s “fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

Terminology surrounding the issue proves divisive, too. Advocates take exception to terms like “physician-assisted suicide” and “medically assisted suicide,” as well as frequent conflations with euthanasia.

‘Do we want patients being pressured to end their lives with suicide as a ‘duty’ to die in order to save money?’

—Focus on the Family, a Christian conservative organization

“In our culture, suicide has a very negative connotation,” Hinckley said. “People who are contemplating using the law and the survivors of people who have used the law find it very hurtful to have the word ‘suicide’ used.”

State lawmakers are also careful in their wording. “This Act does not authorize a physician or any other person to end a patient’s life by lethal injection, mercy killing or active euthanasia,” Maine’s new law reads. “Actions taken in accordance with this Act do not, for any purpose, constitute suicide, assisted suicide, mercy killing or homicide under the law.”

Opponents of aid-in-dying laws point, in part, to its potential framing as a cost-saving measure. “In a dollar-driven health-care environment, the inexpensive cost of assisted suicide is a great concern, as it can be used as a way to reduce the amount of health-care dollars spent per patient,” reads a Q&A page by Focus on the Family, a Christian conservative organization. “Do we want patients being pressured to end their lives with suicide as a ‘duty’ to die in order to save money?”

Matt Valliere, the executive director of the advocacy group Patients Rights Action Fund, told the Associated Press last week that “assisted suicide is a dangerous public policy that puts the most vulnerable people in society at risk for abuse, coercion and mistakes” and “provides profit-driven insurance companies perverse incentives to offer a quick death, rather than costly continuing quality care.”

But Sandeen of the Death with Dignity National Center says that individuals who choose this route are no longer seeking out experimental, aggressive, costly medical treatments to stay alive. “In the 14 years of experience in Oregon that I have, people have already stopped treatments,” Sandeen said. “These folks are not part of the expensive health care at [the] end of life.”

Nora Miller, for her part, said that cost wasn’t a deciding factor in her husband’s decision. They were “in fine shape financially,” she said, and had health insurance that covered almost all of his medical bills. “This is a law that currently still in some ways favors people who are on the higher end of the scale financially; on the higher end of the scale education-wise,” she said. “I don’t think it has penetrated into the full population.”

Indeed, money ranks at the bottom of the list of patients’ motivations in pursuing this path. Just 3.9% of the 1,459 patients who died under Oregon’s Death with Dignity Act over the past two decades said their end-of-life concern was the financial implications of treatment. In Washington, that proportion hovered between 8% and 12% from 2015 to 2017.

The No. 1 concern among patients in both states: losing autonomy.

“This was going to be his chance to take back control — and it really mattered to him, and so it mattered to me,” Miller said. “I always say it’s the last gift we gave each other.”