Abstract
The most basic and powerful way to connect to another person is to listen.
Just listen.
A
We assiduously reviewed the case with the referring staff regarding their estimate of his prognosis (grave and approaching active dying), scoured the chart, and visited the patient and family to assess their understanding of their loved one's medical condition (he was unable to speak for himself because of the medical status). Our team, composed of an experienced faculty member, a palliative medicine fellow, and an observing/visiting physician, elicited their understanding of the current plan of care using gentle clarifying questions with candor and compassion at the fore. The medical situation was extremely complex, the patient was gravely ill, options were extremely limited, and the family was suffering immensely.
Regrettably, their verbal and nonverbal responses manifesting as shock, disbelief, and anger implied that they were only hearing for the first time the full diagnosis and grave prognosis. Furthermore, we all sensed a stressed and adversarial family dynamic between the spouse and two children. We eventually learned from the family of the evolving marriage dissolution and, more importantly, that the advance care and healthcare surrogacy documents specifically excluded the spouse and included the children. Should we have known this? Yes, we should have. Is this an error of ignorance or an incomplete preconsultation chart review on my part? I think so; I just simply missed it.
We then learned that the family members doubted the prognosis beyond the usual skepticism based on their understanding of vastly disparate assessments and advice from a multitude of doctors representing a plethora of specialties. Furthermore, the surrogates emphatically advised us that, despite the written documentation to the contrary, his last words before intubation were “do everything.” The children noted that he had faced and overcome similar critical illness challenges in the past, validating their case for the inaccuracy of the current prognostic assessment and their father's capacity to overcome this forecast too. Conversely, the spouse believed that his prognosis was as poor as described, further fueling the distress among the family members.
We coordinated a family meeting preceded by a strategic planning session with the entire team; a dozen specialists, nurses, case management, and chaplaincy gathered to confirm consistency of message and designate the primary team spokesperson to lead the subsequent family meeting. Ninety minutes of heart-rending dialogue focused the spouse's and children's concerns to consistency of message from a single designated medical spokesperson. We clarified the goals of care and the measures to monitor progress toward those goals; more importantly, we articulated the contingencies and action plans for success in meeting those goals. One family member and one physician actuated the plan. The prevailing sentiments of generosity, compassion, and equanimity suffused the room in equal measure to the practical wisdom, skills, and knowledge of the attendees. The medical uncertainty was like a whirlwind of doubt sweeping all nearer to the abyss; yet, a warm breeze of compassion steadied all.
However, a feeling of angst lingered; did the family members perceive my actions as hubris rather than compassion? I felt as if I had committed a grievous error by unintentionally inflicting suffering contrary to the essence of palliative care (to alleviate suffering).
I asked the family, “Did I offend?”
“Yes.”
“Please forgive me.”
“Yes.”
I recall my altar-boy days of decades ago: mea culpa, mea culpa, and mea maxima culpa.
Maybe I just need to admit it; my questions were well intended, my goals (to learn his/their goals) were clear; yet, not enough. Indeed, I unwittingly inflicted pain—a grievous error.
There is no bottom line; there is no “in the final analysis”; there is only life progressing inexorably, indelibly, and inevitably.
I hear my colleagues, and I can begin to forgive myself.