Living While Dying

Did you know that an overwhelming majority of US adults want to talk to their family physician about their end of life wishes? And that only 15-20% actually do so? This paradox exists for many reasons: discomfort on the part of both patient and physician, culture that accepts a bare minimum of advance care planning, not enough time to have the conversation, lack of training for clinicians and fear on the part of patients they may be bringing the topic up “too early” for it to be meaningful.

Did you know that aggressive care at the end of a patient’s life can actually be harmful? Studies demonstrate that patients who get the “full court press” in their final days report lower quality of life and greater physical and psychological distress. Caregivers surveyed reveal higher rates of major depression and lower satisfaction with the care provided. So why do we do it?

I often tell patients that our default in medicine is “do everything;” if that lines up with what they want, then they don’t need to do much planning. If, on the other hand, that doesn’t reflect their values and goals, it’s very important that they talk to me, talk to their families, and get their wishes written down. It is only when we don’t talk to each other that the right things fail to happen.

I am passionate about the importance of understanding what patients want as they live while approaching the end of their life, and am working to spread that passion to other family physicians (see this FPM article). I believe that understanding doesn’t come from a family meeting that happens in the last few days of someone’s life. Family physicians are best positioned in the health care system to have rich, longitudinal conversations with our patients about their goals of care as they age. We understand that those goals change over time, and we know our patients over time. We can see the point at which chronic disease becomes serious illness. And when serious illness leads to a significant decline in health, we can continue previous conversations and advocate on behalf of our patients for what they want.

The health care system in the US is highly advanced and has the capacity and technology to do a lot TO our patients. We should instead strive for a better system: medicine that provides care FOR our patients.