As the end nears, who’s in control?

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By Alvin Powell

Harvard Staff Writer

When Dan Diaz’s 29-year-old wife, Brittany Maynard, finally slipped away from him, she fell first into a drug-induced sleep and then deeper, into death.

Though Diaz mourned her passing, which occurred in November 2014, he was grateful that she had avoided the “torture” that would have lain ahead — pain, nausea, seizures, blindness, paralysis — as her brain tumor slowly killed her. Diaz left her with a promise: to share her story and fight for others to have the same choice she did.

Diaz brought Maynard’s story — and their campaign in support of MAID, or medical aid in dying — to Harvard Medical School on Thursday. His talk added the perspective of a patient and her loved one to a two-day discussion on the role of doctors in end-of-life choices and physician-assisted death.

Dan Diaz discusses medical aid in dying with Mildred Solomon, director of the HMS Center for Bioethics Fellowship Program.
Photo by Stowe Locke Teti

Diaz said Maynard didn’t fear death, but she did fear the suffering she would likely endure. She was diagnosed with a glioblastoma just months after their wedding in 2012. After an eight-hour operation to reduce the size of the tumor and alleviate symptoms, she was told she had just six months to live.

The pair moved from their home in California, which hadn’t yet legalized MAID, to Oregon, and established residency. In May 2014, Maynard got a prescription for a lethal dose of secobarbital. Having the prescription allowed her to focus on living what time she had instead of on the approaching suffering, Diaz said. Maynard loved the outdoors, so they visited Olympic National Park and the Grand Canyon. They also continued to explore treatment options, including experimental procedures, in clinical trials.

Diaz said calling Maynard’s action suicide or physician-assisted suicide is a misnomer, because his wife had wanted to live. Living wasn’t one of her options, however. Oregon’s medical aid in dying law gave her at least some control over her situation.

“‘Suicide’ is an insult to the hundreds fighting for their lives,” Diaz said. “Brittany wanted to live. A suicidal person wants to die. … The brain tumor is what was killing Brittany. This program simply afforded her control over how that might occur.”

The two-day conference, “Controlling Death? The policies, practices and ethics of choosing when we die,” was organized by Harvard Medical School’s Center for Bioethics and sponsored by the center, Harvard Law School’s Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, and The Hastings Center, an independent, New York–based bioethics research institute.

Discussion at the conference reviewed the legal status of physician-assisted death around the world and in the U.S., including Massachusetts, where a physician-assisted-death ballot initiative failed in 2012 and a second ballot initiative is possible for the 2020 election. Speakers touched on hospice care and pain-alleviating sedation, including sedation deep enough to cause unconsciousness in suffering patients, even though it increases the risk of death. They also discussed VSED, or voluntarily stopping of eating and drinking, and Brittany’s choice: medical aid in dying — legalized in eight states and the District of Columbia — in which a patient with a terminal illness can be prescribed a lethal dose of medication to be taken at a time of their choosing.

The event attracted more than 300 faculty, students, and fellows, international visitors, opponents, and advocates to HMS’s Martin Conference Center. Rebecca Brendel, conference chair and director of HMS’s master’s in bioethics program, said the topic was appropriate for an in-depth ethics discussion because it affects a large part of the population and inspires passionate beliefs.

“There are many deep moral commitments on both sides of the issue,” Brendel said. “How are we going to move forward when we have these deep divisions in our beliefs and our commitments? This is distinctly not a pro/con debate. We’re all uncomfortable in this together.”

The issue is appropriate for discussion, Brendel said, because in addition to the likely 2020 ballot initiative, it is currently before the Suffolk Superior Court, and in a bill before the Massachusetts legislature.

The conference also featured a discussion between MAID opponent Lachlan Forrow and proponent Timothy Quill.

Forrow, an associate professor of medicine at HMS and director of ethics programs at Beth Israel Deaconess Medical Center, said when debating topics like MAID, one has to consider the impact on society’s most vulnerable. Legalizing lethal prescriptions to be used at the end of life, he said, may lead to unintended consequences, particularly among poor populations without access to quality medical care.

Among populations subject to health disparities, he said, MAID could be used not as a last resort but to relieve suffering that might otherwise be alleviated by appropriate treatment or palliative care.

Forrow said he would advise waiting until the health care system has reduced disparities so that such an end-of-life option is truly reserved for end of life.

“I think it’s still too early,” Forrow said.

Quill, distinguished professor of palliative care at the University of Rochester Medical Center, said the problem with waiting is that in the meantime, patients are suffering.

“Holding these patients hostage to us solving our social problems is just not fair,” Quill said.

Oregon’s MAID law, the Death with Dignity Act, has served as a template for other states. It allows physicians to write lethal prescriptions for terminally ill patients who have less than six months to live. The law does not require physicians to participate, but it does require that the patient be a legal Oregon resident 18 years old or older, and capable of communicating heath care decisions for himself or herself, as well as that the prognosis be made by an attending physician.

Medical aid in dying is opposed by the Catholic Church and others who feel that suicide is morally wrong. Opponents have successfully blocked legalization in several states. Today, medical aid in dying is legal in Oregon, California, Colorado, Hawaii, Vermont, Washington, and the District of Columbia. Though Montana does not have a MAID law on the books, the state supreme court ruled that it was legal. New Jersey recently passed MAID legislation, which will take effect in August.

Marcia Angell, a corresponding member of HMS’ Faculty of Global Health and Social Medicine and former editor in chief of the New England Journal of Medicine, campaigned unsuccessfully for MAID legalization in Massachusetts in 2012. She described her husband’s final suffering from metastatic melanoma in 2014 as “not a good death” that “dishonored” his clearly stated wishes.

Today, she said, years of battling over the issue appears to be bearing fruit, with more states legalizing physician-assisted death. She likened the issue to same-sex marriage, which was resisted for decades until its acceptance suddenly spread in a wave of legalization at the state level, followed by a U.S. Supreme Court decision that made it legal across the U.S.

“Medical aid in dying puts the decision right where it belongs, with the patient,” Angell said. “Why should anyone — state, the medical profession, any church, anyone else — presume to tell someone else how much and what kind of suffering they must endure as their life is ending?”

(Reprinted with permission from the Harvard Gazette.)

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