(The New York Times, by Barbara Coombs Lee)
More than two decades before Brittany Maynard’s public advocacy for death with dignity inspired lawmakers in Washington, D.C., and at least 16 states to introduce legislation authorizing the medical practice of aid in dying for the terminally ill, Senator Frank Roberts of Oregon sponsored one of the nation’s first death-with-dignity bills.
Had he lived longer, Frank might have been able to benefit from Oregon’s becoming a state that allowed death with dignity. But he died too soon. I had spent 25 years as an emergency room and intensive care nurse and a physician assistant in cardiology. I witnessed many people’s deaths. But Frank’s was the one that truly ignited my conviction to help change the way Americans die. Frank served in the Oregon House of Representatives from 1966 to 1970 and the Oregon State Senate from 1974 until terminal cancer forced his retirement in September 1993. I was privileged to meet him when I staffed the Health Care and Bioethics Committee on which he served. He was one of the few politicians I ever called a “statesman.”
By January 1991 Frank’s prostate cancer had become both advanced and crippling. Radiation treatments had injured his spinal cord, and he could neither stand nor walk. Yet he still cut a commanding and charismatic figure as he zipped through the Capitol on an electric scooter. It was a poignant moment when he watched his wife, Barbara, take the oath of office as governor. Pride and bliss filled his eyes as Barbara leaned down, caressed his face and kissed him.
Frank had introduced death-with-dignity bills in previous legislative sessions, but they were never heard. This time, it was personal, and he wanted a fair hearing. Surely looking ahead to his own eventual death, he thought it only reasonable and compassionate to allow the terminally ill to obtain aid-in-dying medication they could use if their dying got too rough. He put his staff to work crafting a well-reasoned bill and started lobbying the committee chairman to hear his bill and give it a chance. Frank’s bill did get a hearing in the legislative session of 1991. But it never had a chance. The hearing was simply a courtesy to a senior senator.
The chairman’s priority was an advance directive bill, and he worried that Frank’s aid-in-dying bill would confuse people and complicate the issues. Much of the health care establishment supported advance directives, but at that time powerful religious interests still opposed living wills and health care proxies. Advance directives had a real chance that year, but ultimately that bill met defeat as well.
Dedicated to the rule of law, Frank would not have skirted it to obtain aid-in-dying medication illegally or surreptitiously. Nor would he have used a gun, or other violent means, that would bring such grief to those he loved. Frank’s was the last generation of Oregonians to die without the benefit of access to medical aid in dying. In order to achieve Frank’s dream of death with dignity, we went directly to the people with a citizens’ initiative on the ballot the very next year. We did the same in Washington State in 2008, and in 2009 the Montana Supreme Court authorized this medical practice.
Medical aid in dying has always had enormous public support. Recent polls by Gallup and Harris show that 69 to 74 percent of people believe terminally ill adults should have access to medical means to bring about a peaceful death. This belief is strong throughout the nation and across all demographic categories, including age, disability, religion and political party.
Most politicians have remained completely out of sync with the public’s understanding, and for over 20 years, in legislature after legislature, history has pretty much repeated itself. As opponents pridefully report, lawmakers have introduced death-with-dignity bills in many states, to no avail, sometimes year after year. Only Vermont has actually enacted one in this way, and that effort took a dedicated citizenry, 10 long years, and a governor determined to make good on a campaign promise.
That history is likely to change soon, for several reasons.
First, the phenomenon of Brittany Maynard has transformed the movement for end-of-life-choice into an unstoppable force. Ms. Maynard was the 29-year-old woman dying of brain cancer, who moved, with her family, from her home in California to establish residency in Oregon and gain access to aid in dying. As her pain and seizures escalated and as inevitable paralysis, blindness and stupor approached, she drank medication obtained under Oregon’s Death With Dignity Act and died quietly in a circle of her loved ones last fall. Her family vows to fulfill her legacy of legal reform in her native California and beyond. Young and old alike identify with Brittany Maynard. Her experience as a refugee for dignity sparks the “aha!” moment when people understand the grave injustice of government’s withholding from a competent, dying adult the elements of choice and control over suffering.
Second, claims of harm to vulnerable people and the institution of medicine simply do not hold up in the face of overwhelming evidence to the contrary. Oregon, Washington, Montana andVermont provide the combined experience of 30 years of states’ authorizing medical aid in dying. In all that data is not one episode of an unqualified, nonvoluntary or otherwise inappropriate assisted death. Increasingly, lawmakers who vote down a medical aid-in-dying bill, voicing vague concerns about hypothetical “abuses,” do not appear judicious or reasonable. They just seem cruel.
Third, courts are starting to recognize aid in dying as a fundamental human right. A New Mexico district court has done so, and last month the Supreme Court of Canada struck down laws barring medical aid in dying. Advocates are no longer patient with a legislative process that favors entrenched and powerful institutions over suffering, dying patients. Increasingly, they will go directly to the people or the courts to authorize aid in dying. Once constitutional protection is assured, legislators will be compelled to act, as the Canadian Parliament is now.
The American legislative process failed Frank Roberts, but it will not fail everyone, forever. Baby boomers who see their parents die hard are vowing it will be different for others they love, and for themselves. Young people are educated and energized and joining a movement they once thought did not concern them. Consumers are applying the lessons of the natural birthing and AIDS movements: Dramatic change to empower patients must start with them.
People rise up when injustice and inhumanity hit close to home. Once awakened and aware, they will expect legal reform allowing medical assistance for those whose illness brings unspeakable agonies as they die. Medical advances have prolonged the dying process, and people deserve more comprehensive options.
Frank Roberts died in the governor’s mansion on Halloween night 1993, having borne exactly the prolonged deterioration and suffering he had hoped to help Oregonians avoid. Bedridden for weeks, drifting in and out of consciousness, Frank died shortly after his wife whispered that she understood it was time for her to let him go, that he should “fly like a hawk” and be free. A painting of a regal red-tailed hawk hangs in my office in his memory.
Barbara Coombs Lee, a co-author of the Oregon Death With Dignity Act, is president of Compassion & Choices.