This is National Healthcare Decisions Day Week (yes, that’s a little confusing). It is a week to consider the importance of end of life planning that is sponsored by The Conversation Project, an organization co-founded by a journalist who wrote:
“In my mom’s last years of life, she was no longer able to decide what she wanted for dinner, let alone what she wanted for medical treatment. So the decisions fell to me. Another bone marrow biopsy? A spinal tap? Pain treatment? Antibiotics? I was faced with cascading decisions for which I was wholly unprepared. After all the years I had written about these issues, I was still blindsided by the inevitable.
The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it. And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It’s time for us to talk”
The Conversation Project was born from this experience, an organization created to help people talk about their wishes for end of life care. At Aledade, we share this vision. It is the right thing to do and aligns perfectly with the mission of Accountable Care Organizations that are trying to improve patients’ healthcare experiences while reducing non-beneficial health care costs. 80 percent of patients who die annually in the U.S. have Medicare as their primary insurance and approximately $170 billion is spent annually by Medicare on the last year of life; this equals 25 percent of all Medicare spending. Much of this spending is useful and important, but not all of it is, and Accountable Care Organizations are in a key position to try to improve end of life care in this country.
- 90 percent of people say that talking with their family about their end-of-life treatment preferences is important.
- 27 percent have had this conversation
- 23 percent have put their preferences in writing
- 7 percent have had a similar conversation with their own doctor (the number is higher for Medicare patients: 27 percent)
On the other hand, 64 percent of physicians have completed their own advance directives and discussed it with a family member and 80 percent of physicians have a stated personal preference for comfort care over aggressive medical treatment at the end of life.
What do these statistics suggest? At least two things:
First, that we as physicians have seen what can happen when treatment preferences are not documented and shared with family: unwanted treatment that too often results in needless suffering for patients and their families. We have seen it, and we don’t want that experience for ourselves or our loved ones.
Second, that there are likely barriers that prevent physicians from offering this important aspect of care to all our own patients. Is it a conversation that takes too much time to fit cleanly into a provider’s schedule without spilling into other appointments and backing up a busy clinic? Is it the discomfort with broaching a potentially emotional and uncomfortable subject? The challenge of communicating around uncertain prognoses? Concern about applying our own choices and values to our patients’ most important decisions? Lack of clarity within the medical system around who “owns” end of life planning?
At Aledade, we are taking on the wonderful, difficult and important challenge to understand these barriers and address them. We help primary care practices identify patients who are most in need of end of life planning and offer medical providers training in using the Serious Illness Conversation Guide to discuss end of life preferences. We offer practices the option to partner with Iris Plans, a company with palliative care expertise that offers patients advance care planning via phone and video conference, so these conversations can be held at a time convenient for patients and in a way that allows family members who live far away to join and be included in the conversation in real time. We also have created a scorecard for hospices based on billing data and patient satisfaction surveys to help guide patients to the best possible end of life care.
For ourselves at Aledade we have encouraged our own team to use the Conversation Project Starter Kit to consider their own end of life preferences. This is not only because life usually does not go as planned for any of us, but also so that we can have direct experience with what it means to consider our own treatment preferences and what it is like to communicate our wishes to our families and our own medical providers.
As Robert Frost wrote, “The afternoon knows what the morning never suspected.” What we do know is that helping our patients live the best lives possible includes planning for what happens at the end of it.