Why is it that Americans seem to be the only people on the planet who live their lives as though death were an optional event? For many of us who have worked for years helping families and clinicians grapple with difficult choices in “shared decision making,” we’ve been challenged by that convention despite the evidence that 75 percent of us claim that preparing a living will and appointing a health care proxy are critically important. Yet fewer than one-third of us do anything to make it happen.
Perhaps it’s our willing adherence to myths, most notably our believing that when the time comes, we’ll know, and we’ll have time to get our affairs in order, making our wishes known. This “just in time” approach may be comforting but, in reality, it’s magical thinking. For most of us, the “right time” never comes, but the crisis does. Believing in a scenario that we’ll luck into a peaceful passing without ever having so much as an uncomfortable conversation with anyone doesn’t support the reality that 80 percent of us will eventually rely on a proxy to make decisions for us.
So, how do we prepare for the realities of dying? First, name someone to speak for you when you cannot speak for yourself. But don’t stop there. Talk with that person about what matters most to you. Proxies need to be ready to respond to uncertainties, in a way that you would. Commit to ongoing conversations with loved ones and health providers, so your values and preferences are truly “shared.”
On July 8, the Centers for Medicare and Medicaid proposed new rules to pay for these conversations beginning January 2016. If all goes as planned, Medicare will begin reimbursing providers for engaging in these discussions. That’s good news, because evidence shows that when patients’ expressed wishes are honored, survivors and clinicians report higher satisfaction because treatments align with goals. Anxiety and crises abate.
Before beginning this overdue conversation about values and preferences in end of life decision making, let’s examine a caution. Our tendency in health care is to “medicalize” everything. Getting older is not a disease. The most important decisions you and your proxy will have to make aren’t medical ones. They are emotional, social and spiritual. Death is not a medical event so much as it is a human, community experience.
So, before you take advantage of Medicare’s “advance care planning,” know what you want to say. You don’t have to be ready to answer questions about what kinds of treatments you do or don’t want, because research also shows that we’re not very good at predicting how we will feel about them in the future anyway. Instead, share values, what it means to be fulfilled, how important it is to know the details of your illness, what gives life meaning and what a “complete life” looks like to you. Those are the kind of things that will help your decision makers stand in and up for you when the time comes.
Take advantage of the Center for Practical Bioethics’ resource Caring Conversations, available online for free (or in print for a nominal fee). There are no right and wrong answers, but there can be peace of mind. We know — and now Medicare agrees —that talking before the crisis can work.
It leads to more favorable outcomes and higher likelihood that preferences get honored. Satisfaction improves. Patient-centered outcomes matter to everyone. Helping providers find that path is a duty we all bear. Death may be a sad outcome, but it doesn’t have to be a bad one.
John G. Carney is the president and CEO of the Center for Practical Bioethics in Kansas City. In 2008 he co-wrote a report to Congress on advance care planning.