Abstract
Several months later I truly came to understand the importance of being the one to “make someone cry.” It was a painful experience for me. I am certain it was a much more painful experience for the family of Terry.
I remember a colleague checking him out to me on a Friday afternoon, telling me that the 20 year old had been in a horrible vehicle accident several days prior. He had suffered massive head trauma in the wreck and was not expected to have any meaningful recovery. Besides his traumatic brain injury, he had a fractured femur and multiple other injuries. I distinctly remember a sense of relief when I learned that I was to evaluate and address his symptom burden, but not his goals of care. While I was confident in my ability to address his goals of care, that would be a much more painful thing to do, especially since he was only 20 and I was the parent of a 19-year-old and a 21-year-old.
Dutifully, after rounding in the palliative and comfort care unit (PCCU) the next day, I traversed to the trauma unit where Terry was located. His mother was at the bedside and we discussed her son's symptoms. As instructed, I intentionally avoided a goals of care discussion, although his mother seemed interested in pursuing one and broached the topic twice. As I finished rounding, I continued to be disturbed by the encounter with Terry's mother, so I decided to call the trauma attending to discuss the situation with her. To my dismay, she told me she had advised the family that the goals of care discussion could be undertaken over the weekend, as she had engaged in additional conversations with them after our consult team had seen them on Friday. It was decided that I would return to meet with the family and conduct a goals of care discussion if they indeed desired to do so.
As I arrived again that pm, I was ushered into a family conference room by the trauma staff. There, the patient's mother, father, brother, and multiple other family members had gathered. I had requested that the trauma resident be present for the discussion as well. I began the meeting by asking the resident to update us on the patient's condition. I then assessed the family's understanding of Terry's condition. They seemed ready to consider the goals of care discussion that included the possibility of compassionate extubation, so I began a discussion of what this would entail. It was a technical discussion, twice interrupted by the resident's pager and occasionally disrupted by discussions among the participants themselves. After 40 minutes or so, his parents expressed a desire to proceed with compassionate extubation the next day. We agreed to meet again in the morning to review and finalize the plans. Our meeting was then terminated abruptly as several family members left the room suddenly, presumably to tell others of the decision.
After that, I spoke with Terry's nurse regarding plans for the next day. We both agreed that the finality of the decision to compassionately extubate had not really registered with the family in the afternoon meeting. We decided to restrict the number of participants in the next day's meeting and agreed that I would need to be much more explicit and direct in my approach. Underlying this plan was our concern that the family may not fully understand Terry's condition or the implications of their decision.
At the designated meeting time the next day there was much angst among the family and me. The nurse had requested only immediate family and a few close others be present for this meeting. I sat directly across from his parents for this meeting. I reviewed that there had been no changes in 24 hours and then explained the planned procedure in detail. I reviewed that, with this decision, Terry would not be a candidate for a repair of his femur fracture. This resonated with his mother; she wondered if he stabilized after compassionate extubation why it couldn't be repaired at a later time. We reviewed that his ventricular monitoring device would be removed prior to the procedure, he would not be placed back on the ventilator once he was taken off, and he would not undergo CPR or cardioversion if his heart stopped. This resonated with his father; he wondered why we couldn't provide supportive measures for his son's heart if it stopped beating.
I was explicit and detailed, painfully so. I gradually removed every treatment option that had been considered in the past week, as well as every other option I could think of that may have crossed their minds. After their questions were answered, it was my turn, so I asked, “Are you ready to proceed?” There was a long pause, an eternal silence. Then his mother burst into tears, covering her face with her hands. Through her tears, she uttered, “All I can think about now is when I used to come home and my two sons would kiss me, one on each cheek, and ask me how my day had been.” With that the entire room burst into tears. Several family members came to her side to comfort her as she sobbed uncontrollably. Try as I might, I could not hold back the tears either. I did manage to finish the conference and confirm that we were proceeding with compassionate extubation. I dried my eyes as the family left the room.
The trauma nurse did much of the work the rest of the afternoon, telling me how the orders should be entered for their unit, coordinating care with neurosurgery and respiratory, and finally expressing concern to me about how difficult the family meeting had been. Terry initially survived and was transferred to the PCCU the next day. He died peacefully and comfortably with his family at his side several days later.
I still think about Terry and reflect on the lessons I learned from him and his family. First, that it really can be a relief for those of us in palliative care when we see families shed tears. It lets us know they realize the impending and unavoidable loss they face, and that they understand the gravity and the finality of their decisions, even though that understanding may make us shed tears too.
I also learned that the shedding of tears by medical providers is not to be considered a sign of weakness. We do have to protect ourselves from the emotional trauma we are exposed to when we care for patients and families. We do this to remain objective, so we can provide sound, high-quality medical advice and can be good health care providers. But sometimes we do get involved with patients and families in tragic circumstances. And when we shed tears it lets them know that we really do care; we are not just there to be a technical advisor. It lets them know that we do feel their pain; their loss is real for us. A year later, I still feel their pain. I still feel their loss. It makes me shed tears, and I know it does the same to them.