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Early conversations with terminal patients and family members can often better inform treatment plans, and take out the emotional road blocks.
Recently a colleague asked me to review a patient case in which an unfortunate patient had bounced between his home, the hospital, and a nursing home several times over a period of a few weeks before finally dying in the hospital. Although this gentleman had advanced cancer, his family was unwilling, and he was unable, to choose palliative rather than aggressive care. The most interesting thing in reviewing his chart is the number of physicians who spoke to the family about hospice.
At each point in this patient's journey, whether the ICU, emergency room, or nursing home, his family was advised to pursue a more reasonable treatment approach given his prognosis. Reading the chart, the frustration on the part of each physician was evident to me. Take home instructions from the emergency room included patient instructions with the words "discuss hospice care with your doctor" in bold type. After this patient passed away, the hospital physician became very concerned that our system failed him and his family.
There is no doubt that multiple, lengthy, and likely impassioned conversations occurred over the course of many weeks about realistic expectations for care, recommendations about the best end-of-life care available, and the futility of repeated hospitalizations. Nevertheless, the patient's family chose what we all dread - multiple hospitalizations and interventions in the last days of life.
I do feel that we failed the patient. Somewhere along the line, we should've had a conversation with him about his specific wishes in the event that he had a terminal illness and was no longer able to make his own choices. There was also the opportunity at the moment of the cancer diagnosis to address the "what ifs" of treatment failure. As things progressed, there were likely many opportunities to discuss, inform, and work with the patient and his family to define the best care he could get, when neither treatment nor cure of his disease was possible.
Instead, this family faced difficult decisions at the very moment they were also faced with the patient's imminent death. They were being asked to change from pursuing treatment and cure to accepting his likely death and providing comfort care. I am certain that his family loved him and wanted the best for him. However, something in the message or messenger failed to convince them.
While I believe this patient could've received better care, I also wonder at our certainty about what should've been done. Maybe all the conversations were done well and at the right time. Maybe the family perfectly understood what we were trying to say. Maybe they chose what none of us would choose for ourselves because that's what they wanted.
Physicians often assume that patients disagree with our recommendations because they don’t understand why we make them. Often, this is true. However, sometimes it is not. Our patients may just disagree with us. In the case of this gentleman, I wonder how the tone of conversations and the course of his care would've changed if there was a mutual understanding between his care team and his family that the message was delivered and received, but the family still disagreed with the recommendations.