Medical aid in dying: A hallmark of patient-centered care

By Barbara Coombs Lee and Kim Callinan

One thing the national election did not change: as the nation’s 75 million baby boomers retire, an ever growing number grapple with the reality that people die in circumstances they would not choose. At a time when the country is divided, the election showed one issue unites us: personal choice in end-of-life care.

The most recent proof? By a nearly 30-point margin, Colorado voters approved a citizen-led End-of-Life Options ballot initiative on Nov. 8. The new law gives terminally ill adults the option to get a doctor’s prescription for medication they may decide to take to end unbearable suffering, by dying peacefully in their sleep. Voters across a broad demographic range supported Prop. 106, according to exit polling conducted for The Associated Press and television networks in Colorado..

This Colorado victory stands in a line of advances for the end-of-life choice movement over the past two years. 1) California enacted a medical aid-in-dying law that took effect in June; 2) the District of Columbia Council passed medical aid-in-dying legislation and the mayor signed it Dec. 19 ; and 3) lawmakers in 19 states introduced medical aid-in-dying bills this year.

The question before us is why is the issue of medical aid in dying gaining so much momentum? And how can we leverage this momentum to improve general end-of-life care?

During the past 20 years, our country has made little or no progress on key quality indicators: non-beneficial treatment is still on the rise; advanced directives are still ignored; and admissions to intensive care units (ICUs) in the last 30 days of life continue to rise. People want to die at home, but two-thirds die in institutions.

Respected policy makers publicly acknowledge that we won’t change these key quality indicators until a populist movement rises to drive a transformation. Obviously, the consumer movement already exists. But to harness the power of this movement, the palliative care community and medical establishment must embrace patients’ desire for self-determination, including shortening an intolerable dying process.

The American public has embraced medical aid in dying because it puts patients firmly in charge of their own decisions about end-of-life care. To patients, it is a prime litmus test of person-centered care. It exemplifies a medical system that respects patients by allowing them to assert their values and priorities as death approaches.

However, Medical Aid in Dying is only a start. To truly transform end-of-life care in this country, we need to stop the conveyor belt of over treatment and false promises. We need to ensure that healthcare providers give people complete information about all their end-of-life care options. It is the only way to ensure patients make fully-informed treatment decisions.

Today, we call upon leaders within the medical, policy and palliative care communities to recognize the growing consumer movement. We call on them to unite around a new definition of ‘patient-centered care.’ A definition that respects patients’ values and priorities around death as paramount…even if they differ from those of the healthcare community. Only by working together will we finally make noticeable, significant improvements on key quality indicators of end of life care. Then people will finally be able to die the way most of us want: peacefully, at home, and in the arms of our loved ones.

Barbara Coombs Lee was an ER and ICU nurse and physician assistant for 25 years. Currently, she is an attorney and President of Compassion & Choices, the nation’s largest end-of-life choice advocacy organization, with 450,000 supporters nationwide. Kim Callinan is chief program officer for Compassion & Choices. She holds a Master’s degree in public policy from Georgetown University, a graduate certificate in public health from the University of South Florida and a Bachelor’s degree in government from Oberlin College. This oped was originally published in The Hill’s Congress Blog.