Difficult Conversations: Understanding the Need for Advanced Directives

April 16 was National Healthcare Decision Day (NHDD)—a day that exists to inspire, educate, and empower the public and providers about the importance of advance care planning. NHDD encourages patients to express their wishes regarding end-of-life care and for providers and facilities to respect them. Although we are now more than a month past this important day, it’s always a topic worth discussing.

As a surgeon and former academic health system leader, I have spent a good part of my 35-plus-year career wrestling with how American healthcare, and families and physicians, deal with end-of-life issues. As a surgeon, I believe my skills improved in this area as I progressed in my career, and I gained a better understanding of the complexities of the issue. As an administrator, I’m not sure I made very much progress.

The complex and emotional web of issues associated with end-of-life care is not unique to the United States. Meeting the needs of terminally ill patients and their families is a persistent challenge in Western European healthcare systems. But we are behind the curve in developing a deliberate and measured plan to address the problem.

The cost of continuing to ignore this complex issue—both in terms of individual quality of life and the broad financing of healthcare—is enormous. To get it right, we need to understand what matters most to patients at the end of their life. We should reframe the end-of-life discussion from “winning” or “losing” to accepting the inevitability of death and doing a better job of planning for the event well before it is on our doorstep.

Progress is being made in parts of the country, however. In a remarkable initiative spanning over a quarter century, more than 95% of the seniors in southwestern Wisconsin now have advance directives in place during the last 2 years of their lives. As a result, the overwhelming majority of patients have care plans that reflect their expressed wishes, resulting in what is referred to as a “good death.” We would do well to figure out how to extrapolate that model across the rest of the country.

There is no “right” amount of care at the end of life. The best measure of success is to match a care plan to the patient’s informed preference, within the boundaries of the doctor-patient relationship. To close the gap between how patients tell us they want to die and what ultimately happens, we need caregivers to have “the conversation” to help their patients think about what they want at the end of their life before it is upon them. The benefits and intricacies of this conversation were well highlighted in a moving 2011 documentary called “Consider the Conversation.” I recommend watching it.

We will start to narrow the gap between current state and future state when we pivot away from asking, “What’s the matter with Dad?” to ask instead, “What matters to Dad?”

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Excerpts from the blog previously appeared in an OpEd published in the Providence Journal in May of 2017 and co-authored by myself and Tom Robertson