By Barbara Coombs Lee and Kim Callinan
During a CNN presidential town hall on Feb. 3, an 81-year-old man from Concord, New Hampshire, with phase IV colon cancer, Jim Kinhan, asked Hillary Clinton what she could do to “help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance their end of life with dignity.”
Jim Kinhan is not alone.
Our society is in the midst of a profound shift in attitudes toward end-of-life healthcare. We are increasingly aware that too many suffer needlessly in their dying. Too many endure tests and treatments that increase suffering but do nothing to extend life. Too many carry memories of the pain, confusion and agony of a dying loved one.
Every day, 10,000 people turn 65. The proportion of the population reaching age 85 is 48 times larger than a century ago. Increased life expectancy brings challenges of advanced illnesses among the aged.
Our medical system focuses almost exclusively on extending life at any cost, often at the expense of its quality. The Centers for Medicare and Medicaid Services reinforces this focus by reimbursing doctors generously for complicated tests, ICU stays and medical device implantations, but not for conversations and comfort care.
People who do not communicate their values and priorities as illnesses advance often pay dearly for this failure. Lacking clear guidance on how an individual weighs the quality of life against its absolute duration, physicians often assume the latter, so they propose agonizing tests and treatments that steal life’s joys as they prolong the dying process.
Most Americans want to die at home, peacefully and with loved ones close by. But nearly 40 percent die in a hospital, and almost 60 percent of these hospitalizations include an ICU admission.
As noted in the Jan. 19 issue of the Journal of American Medical Association, devoted entirely to end-of-life care:
“ICU care in the United States at the end of life appears unwanted, expensive, and futile.”
In other words, our healthcare system is failing to deliver what people need as they approach an inevitable and imminent death.
Polls shows people across the country increasingly expect candid information, more options and more personalized care at the end of life.
We’ve seen the power of storytellers like Brittany Maynard, a 29-year-old Californian who moved to Oregon to utilize its death-with-dignity law to end her unbearable suffering from terminal brain cancer. Her story led to a five-fold increase in bills to authorize medical aid in dying as an option for terminally ill, mentally competent adults. Last fall’s historic signing of the End of Life Option Act in California quadrupled the number of Americans with the option of medical aid in dying — to nearly one in six.
But medical aid in dying is only one part of the story of a shifting paradigm. Authorized medical aid in dying fosters frank conversations about the crucial balance between the quality of life and its absolute quantity. It empowers patients to die on their own terms, and that is a potent beginning for many types of reform. Empowered patients ask more and better questions. They weigh treatment decisions carefully, and they understand how an ICU admission, with its cascade of tests and treatments, impacts the end-of-life experience.
People need greater access to information and options as the end of life approaches. And they want our national and state policymakers to address this need.
Compassion & Choices has federal policy solutions to achieve this transformation. They build on the Institute of Medicine’s landmark study, Dying in America, released in late 2014. Below are three of our 18 policy reforms:
No one should suffer needlessly at the end of life. Our policy solutions are designed to minimize suffering and maximize comfort at the end of life.
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. 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.