- What is your understanding of the situation and its potential outcomes?
- What are your fears and what are your hopes?
- What are the trade-offs you are willing to make and not willing to make?
- What is the course of action that best serves this understanding?
Could these four little questions – that appear and reappear throughout Atul Gawande’s book Being Mortal: Medicine and What Matters in the End – reshape end-of-life care as we know it? Surely not on their own, but the stories woven throughout Gawande’s discussion of the current state of medical care make a compelling case. These four little questions, after all, are not really so little.
We as a society are uncomfortable with death. That may seems like a silly statement to make. After all, do we want to really be comfy with the end of life? Well, perhaps not. But, the fact is it will happen to us all and our discomfort has made death a taboo topic of conversation. We don’t even like to say that someone died and instead say things like “he passed on” or “she is no longer with us”. Consequently, we shy away from talking about death even at those moments when it is most crucial. The amazing advances in medicine that can extend life, even beyond the point of truly living, allow us to avoid facing the reality of death and to become obsessed with longevity over quality.
Hence the four not-so-little questions.
I appreciated Gawande’s honest depiction of his own struggle as a surgeon confronting death with his patients (as well as friends and family) and his efforts to look for a better way. His concerns lead him to experts in geriatric medicine and palliative care, medical specialties that don’t just focus on treating medical conditions, but on improving quality of life. Ironically, their approaches often improve underlying medical conditions as well, at least for a time.
It was a palliative care specialist that told Gawande the four questions. Using the answers to these questions to guide treatment – even when the patient is not able to speak for themselves – gives them a measure of autonomy and control in the midst of limited choices. Asking these questions slows the process down and helps the doctor see the human being, not just the illness. It shapes the discussion in a way that is more meaningful to the patient and their family than a bewildering recitation of medical facts and treatment options. It puts these options in a patient-centered, person-centered context.
The results can be surprising. One story that stood out for me was the man who said, on the eve of a risky surgery, that he would be okay with being paralyzed if he could eat ice cream and watch sports on television – much to the surprise of his daughter. When the surgery didn’t go as expected and she had to make a decision on her father’s behalf, she knew what he would decide because she had the conversation with him. And, most importantly, it was different than the decision she might have made otherwise. It wasn’t an easy conversation, and she is a palliative care doctor who does this for a living. Imagine how difficult for the rest of us (doctors and family alike) who don’t even know what questions to ask.
I suspect that most of us give our doctors the benefit of the doubt. Even when I’m unhappy with the care I or someone I care about receives, I assume that they want what’s best for their patients. But their training is to fix problems, their orientation is to extend life, and the systems they work within are generally not set up to facilitate anything else. These things need to change. Sometimes (as with the very old), there is not a clear problem to fix. Sometimes (as with the terminally ill) it is not fixable. Being Mortal highlights for me once again the importance of interdisciplinary teams. (Cue plug for social workers here).
Social work training is rooted in person-centered, holistic care. While doctors should not be left completely off the hook and allowed to push these hard discussions off on social workers or others, having a social worker as part of the conversation with patients would help doctors manage the emotional and relational parts of these important conversations and decision making.