Help from the law at life’s end

“How do you want to die?”

That was the opening question from Corinne A. Carey ’98, who challenged students and others to help push for laws that give dying people more choice in the circumstances of their passing.

Carey is New York State campaign director for Compassion & Choices, a national group that lobbies for public policy that allows medical aid in dying, and supports patients, families and health care providers as they negotiate the sometimes murky legal situation at the end of life. Her Nov. 20 presentation at the School of Law, “Expanding Options at the End of Life: Changing the Law to Allow for Medical Aid in Dying in New York State,” was co-sponsored by the School of Law's Immigration and Human Rights Clinic.

Aid in dying – giving terminally ill patients the legal right to ask their doctor for life-ending medication – is tough to think about, Carey acknowledged. But, she said, “access to aid in dying isn’t about death. It’s about life and how people live the final days of their lives.”

Five states have enacted the legal framework for such aid: Oregon (whose first-in-the-nation legislation was passed in 1996), Washington, Montana, California and Vermont. Legislation to authorize medical aid in dying is now pending in 25 states – including New York.

State and federal courts, Carey said, have wrestled with the issue. The U.S. Supreme Court has ruled that patients have a constitutional right to palliative care that controls their pain, but has not yet affirmed an aid-in-dying law on the national level, referring the issue to the “laboratory of the states.”

Carey said the End of Life Options Act, pending before the New York State Legislature, contains safeguards for both patients and doctors. For example, she said, patients would have to obtain the drugs at their own request and administer the medication to themselves; two doctors would be required to certify that the patient is terminally ill; Alzheimer’s patients and terminally ill children would be excluded; and a “conscience clause” would allow doctors to refuse to participate in any such request. The proposed law in New York is modeled after Oregon’s Death With Dignity Law.

She wanted to be clear, she said: “This is not suicide. Suicide is about choosing death over life. When someone has a terminal illness, they are actively dying; they no longer have a choice of death over life, but they may want the choice of one form of death over another.”

Carey says a poll by her organization found 81 percent support statewide for aid in dying. Opponents of the bill include organized religion, largely the Catholic Church, which argues that aid in dying intrudes on the sanctity of life; and the American Medical Association, which asserts that doctors’ participation would conflict with their promise, in the Hippocratic Oath, to “do no harm.”

“This is not really a partisan issue,” Carey said. “It’s an issue that moves people based on their own experiences and their own values.”

Interestingly, she said, the experience in Oregon is that about one-third of patients who receive the medication never take it. But the reality that the option is there provides immense psychological relief.

That truth was driven home by a brief video featuring Brittany Maynard, the young California woman whose physician-aided death in Oregon became a social media phenomenon last year. Maynard was just 28 when she received a diagnosis of terminal brain cancer. “Brittany asked her doctors to tell her what her tumor would do before it killed her,” Carey said, “and she decided she didn’t want to put up with that.”

Compassion & Choices interviewed Maynard before her death. “I can’t even begin to tell you,” she said, “the relief it provides me to know that I don’t have to die the way it has been described to me, the way my brain tumor would take me.”