Medical aid in dying: A hallmark of patient-centered care
The following op-ed appeared in the Hill on November 22, 2016:
There is one thing the national election did not change: as the nation’s 75 million baby boomers retire, an ever growing number of our citizens are grappling with the reality that people don’t die as they would want. 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. Both men and women, Hispanics and whites and people with and without college degrees said they backed the proposal and it received more total votes than any other measure or candidate on the Colorado ballot.
This Colorado victory stands in a line of advances for the end-of-life choice movement that began in Oct. 2014. That’s when an articulate 29-year-old woman dying of brain cancer, Brittany Maynard, set the end-of-life choice movement ablaze by moving from California to Oregon to access medical aid in dying.
Since she shared her story 1) her home state of California enacted a medical aid-in-dying law that took effect in June 2) the District of Columbia Council approved medical aid-in-dying legislation on Nov. 15 by a veto proof margin of 11-2 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 end-of-life care?
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.
Medical aid in dying is a natural and central component of patient-centered, end-of-life care. However, it 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.
During the past 20 years, the medical system, foundations and national organizations have spent enormous energy and hundreds of millions of dollars trying to accomplish this goal. These efforts popularized conversations about advance planning for end-of-life care and created the new medical specialty of palliative care.
But they 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 patient’s’ desire for self-determination, including shortening an intolerable dying process.
Authors of an Annals of Internal Medicine article called on physician organizations to adopt a position of ‘engaged’ neutrality on medical aid in dying. What does that mean? The authors assert that medical aid in dying “is here to stay” and that professional organizations must offer “support and guidance to physicians on how to provide the best possible care to dying patients” seeking to exercise this right.
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 patient’s’ 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.