by Paula Span – The New York Times
Judith Katherine Dunning had been waiting anxiously for California to adopt legislation that would make it legal for her to end her life.
The cancer in her brain was progressing despite several rounds of treatment. At 68, she spent most of her day asleep and needed an aide to help with basic tasks.
More centrally, Ms. Dunning — who, poignantly, had worked as an oral historian in Berkeley, Calif. — was losing her ability to speak. Even before the End of Life Option Act became law, in October 2015, she had recorded a video expressing her desire to hasten her death.
The video, she hoped, would make her wishes clear, in case there were any doubts later on.
“She felt she had completed all the important tasks of her life,” recalled her physician, Dr. Michael Rabow, director of the symptom management service at the University of California, San Francisco. “When she could no longer communicate, life was no longer worth living.”
In recent months, this option has become available to a growing number of Americans. Last June, aid-in-dying legislation took effect in California, the most populous state. In November, Colorado voters approved a ballot measure by nearly a two-thirds majority. The District of Columbia Council has passed a similar law, and the mayor quietly signed it last month.
Aid in dying was already legal in Washington, Vermont, Montana and Oregon. So even if the District of Columbia’s law is blocked, as a prominent Republican representative has threatened to do, the country has arrived at a remarkable moment: Close to 20 percent of Americans live in jurisdictions where adults can legally end their lives if they are terminally ill and meet eligibility requirements.
The laws, all based on the Death With Dignity Act Oregon adopted in 1997, allow physicians to write prescriptions for lethal drugs when patients qualify. The somewhat complicated procedure involves two oral requests and a written one, extensive discussions, and approval by two physicians. Patients must have the mental capacity to make medical decisions.
While that process took shape in Oregon two decades ago, the cultural and political context surrounding it has changed considerably. The states recently considering the issue differ from earlier adopters, and as opposition from some longtime adversaries has softened, new obstacles have arisen.
Historically, aid in dying has generated fierce resistance from the Catholic Church, from certain disability-rights activists, and from others who cite religious or moral objections. Even the terminology — aid in dying? assisted suicide? death with dignity? — creates controversy. But the concept has long drawn broad support in public opinion polls.
Polltakers for the General Social Survey, done by NORC at the University of Chicago. have asked a representative national sample this question since 1977: “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient’s life by some painless means if the patient and his family request it?”
The proportion of Americans responding affirmatively, always a substantial majority, has bounced between 66 and 69 percent for 15 years. But support was not evenly distributed: Such laws initially were enacted in states with predominantly white populations like Oregon, and to date the vast majority of patients who have used them are white.
“I hear people talk all the time about this being a rich white person’s issue,” said Donna Smith, legislative manager for the District of Columbia at the group Compassion and Choices, who is African-American. “Now, we have proof on the ground that that is not true.”
Indeed, aid in dying has expanded to more diverse locales. Non-Hispanic whites represent a minority of Californians. Colorado is more than 21 percent Latino. In the District of Columbia, nearly half of whose residents are African-American, five of six black council members voted in favor of the legislation.
State medical societies, once active foes of aid-in-dying initiatives, also have begun shifting their positions, citing deep divisions among their members. The California Medical Association, the Colorado Medical Society and the Medical Society of the District of Columbia all took officially neutral stances as legislators and voters debated, depriving opponents of influential allies. So has the state medical society in Maryland, where legislators plan to reintroduce a bill (the third attempt) this month.
The American Medical Association — an opponent since 1993 — has agreed to study whether it should also move to neutrality on physician-assisted death.
But even as the idea gains acceptance, passage of a bill or ballot measure does not always make aid in dying broadly available to those who want it. In addition to the safeguards the law requires, its practice can be balky — at least in the early stages.
State opt-out provisions allow any individual or institution to decline to provide prescriptions. In California, Catholic health care systems have opted out, predictably, but so have a number of others, including Vitas, the nation’s largest hospice chain.
Moreover, California hospitals and hospices can forbid their affiliated physicians to write the necessary prescriptions, even if they are acting privately. Some health systems with hundreds of doctors have done so. (Vermont, Colorado and the District of Columbia allow doctors to make individual decisions.)
“The shortage of participating providers has led to a lot of patient and family frustration,” said Dr. Laura Petrillo, palliative care physician at the San Francisco V.A. Medical Center, in an email.
“They had the expectation that it would be available and happen seamlessly once the law went into effect, and then find themselves needing to do a lot of legwork” to find doctors willing to prescribe lethal drugs and pharmacies to fill prescriptions, she said.
Sometimes, when patients have waited until late in their illnesses, they die before they can become eligible for assisted death. Or they become too physically or mentally incapacitated to take the drugs themselves, as legally required, even if they do qualify.
In areas where many providers opt out, very sick patients may have to travel long distances to use the law. And costs can also prove a barrier.
Some private insurers pay for the necessary doctors’ visits and drugs. In California, most do, said Matt Whitaker, state director of Compassion and Choices, the leading aid-in-dying advocacy group. But Congress has long prohibited the use of federal dollars for aid in dying, so Medicare and the Department of Veterans Affairs will not cover it. States like California and Oregon have agreed to cover the costs for Medicaid recipients; others do not.
Cost mattered less years ago, when a lethal dose of barbiturates ran a couple of hundred dollars. But in 2015, as California legislators introduced their bill, Valeant Pharmaceuticals acquired Seconal, the most commonly used aid-in-dying drug. The company, known (and condemned) for a similar strategy with other medications, spiked the price, a move Mr. Whitaker called “ethically and morally bankrupt.”
Now, patients whose insurers will not cover aid in dying face paying $3,000 to $4,000 for the drug. Valeant has denied the suggestion that it was exploiting the new law. As a result, physicians are turning to alternative — and less-well-understood — combinations of opioids and sedatives for those who cannot afford the standard medication.
Despite such obstacles and disappointments, an emboldened Compassion and Choices,, with a staff that has tripled since 2008 and an annual budget that has nearly quadrupled to $16.9 million — is eyeing its next targets. Over several years, its leaders think they can help legalize aid in dying in Maryland, Hawaii and New York.
Aid in dying, it should be noted, may be a vehemently debated issue, with campaigns that can involve thousands of participants and millions of dollars — but it ultimately has affected a tiny proportion of people.
The number of residents taking advantage of these laws in Oregon and Washington has climbed in the past two years. Still, after nearly 20 years in Oregon and eight in Washington, far fewer than 1 percent of annual deaths involve a lethal prescription. (Of those residents who do receive one, about a third do not use it.) It’s not the way most Americans choose to die, even when they have the legal option.
Yet the end of life care most people receive needs substantial improvement. While partisans fight over aid in dying, skeptics like Dr. Rabow note, the complicated and expensive measures that could improve end-of-life care for the great majority — overhauled medical education, better staffed and operated nursing homes, increased access to hospice and palliative care — go largely unaddressed.
Still, Ms. Dunning was Dr. Rabow’s longtime patient. When California’s act took effect, she began the process of requesting lethal medication. Her speech had slurred further, but not yet enough to render her unintelligible.
Dr. Rabow did not want to see her die, and he is no fan of the aid-in-dying movement. But Ms. Dunning had been clear, consistent and determined. He wrote the prescription.
“She was ready to have her life end, and no amount of support or medication or counseling would change the situation,” he said.
In September, she invited him to her home, where she planned to swallow the fatal slurry of barbiturates. On the appointed day, Dr. Rabow arrived to find “a house full of people who didn’t want her to end her life, but were there to support her and respect her well-considered decision.”
Over the course of the day, people said their goodbyes, then withdrew to leave Ms. Dunning with her closest relatives, her hospice nurse and her doctor. Her son mixed her Seconal solution and she swallowed it, no simple task for someone with advanced cancer.
She lost consciousness almost immediately and died several hours later.
“I wished she could have had a natural life span,” Dr. Rabow said. “And I would have made a different choice. But I was honored to be there to watch this very dignified woman live her life the way she wanted to.”