End-Of-Life Care: Are We Ready for Real Reform?

By Kim Callinan


Kim Callinan will be presenting “Patient Centered Care: Translating Patients’ Wishes Into Federal and State Policy” with Dr. David Grube, National Medical Director at Compassion & Choices and Brian Lindberg, executive director, Consumer Coalition for Quality Health Careduring the 2016 Aging in America Conference on March 21 at 9:00am

Over the past several decades, our unprecedented medical advances have outpaced our progress in ensuring that people with advanced illnesses have the comfort and quality of life they deserve as they near the end of their lives. Most people who indicate their end-of-life care preferences choose to focus on alleviating pain and suffering, but the default mode of hospital treatment is acute care, concludes a September 2014 Institute of Medicine (IOM) report entitled Dying in America. Why has this unacceptable situation happened? 

As a society, we have always shied away from talking about death -- despite the fact that it is an eventual outcome for all of us. Only one of every six adults (17%) actually have talked with their doctor or healthcare provider about their end-of-life priorities and values, according to a September 2015 Kaiser Family Foundation Survey.

Unfortunately, most doctors aren’t any more prepared to have these conversations than are their patients. Most physicians don’t go into medical school to help people have a better death. Even if they did, most medical school curriculums don’t adequately teach doctors how to address end-of-life care. As best-selling author Dr. Atul Gawande so eloquently wrote in his book, Being Mortal, “doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.”   

What’s important to understand is that the American public's sharply increased interest in end-of-life choice and care is not just about the passage of medical aid-in-dying legislation in our nation’s largest and most diverse state, California -- it’s about a movement to demand choice and a cry for better options and improved care in our end-of-life health care system. To make this goal a reality, Compassion & Choices put together a federal policy agenda that is based on the IOM’s Dying in America report outlining the systemic crisis in end-of-life care. Think of the IOM report as the diagnoses of the problem and Compassion & Choices’ federal policy agenda as the treatment. Our agenda covers a range of issues from hospice and palliative care, to changing perverse payment structures that reward unwanted medical treatment, to professional education of health care providers about end-of-life issues.

If you are interested in learning more, please join my colleague, Dr. David Grube, national medical director at Compassion & Choices; Brian Lindberg, executive director, Consumer Coalition for Quality Health Care; and me at the American Society on Aging’s annual conference. Our session, “Come to Patient Centered Care: Translating Patients’ Wishes Into Federal and State Policy,” is on March 21 at 9:00am. If you have not yet registered, you can get a $50 discount to attend the conference by entering the promotion code PRSNTR50 when you register. We hope to see you there!

In the meantime, if there are topics you would like to see us address, please let us know by posting in the comment section, below.   


Kim Callinan is Chief Program Officer at Compassion & Choices