JAMA published an essaythis week about a conversation I had with my grandparents entitled “Can We Agree to Disagree”. This conversation changed the way that I practice medicine and changed the way that I discuss goals of care with my patients and their surrogates.
In the essay, I describe a gut wrenching, although thought provoking, end-of-life conversation that I had with my grandfather and his surrogate decision maker— my grandmother. The essay describes how my grandfather was more concerned about my grandmother’s well being, feelings, perceived burden, and her preferences (to have my grandfather receive full aggressive measures) than he was about having his own treatment preferences honored (comfort care).
What was even more eye-opening, however, is that neither of my grandparents knew that they disagreed with each other about these treatment preferences. Had we not discussed my grandmother’s needs and desires, and specifically addressed the fact that my grandparents disagreed, I am not sure that I, nor my grandfather’s clinicians, would have felt comfortable if my grandmother had subsequently changed my grandfather’s code status. I also wonder how my grandmother would have felt if my grandfather had signed his advance directive requesting comfort care, and then medical team had not attempted resuscitation when he did eventually “code.”
Thankfully, my grandparents had the opportunity to discuss these differences, come to peace about them, and agree to disagree. As Dr. Seth Landefeld, Chief of the Geriatrics Division at UCSF, recently reflected, “People are often more concerned with what they leave behind than with what they take or how they go.”
My grandparent’s story taught me that surrogate decision making is complicated and hard. It is also based on a myriad of factors – some of which trump the patient’s preferences. Surrogates needs and potential misunderstandings should be discussed prior to a medical crisis.
It has been five years since my grandfather died and my grandmother still feels at peace about her decision. My grandmother has had a series of her own medical problems and hospitalizations for serious medical conditions. The prior discussion I had with both of my grandparents has made discussions with my grandmother about her goals of care much easier. She, like my grandfather, would like to pursue comfort care. However, just like my grandfather, she would like her sons to have leeway in decision making.