The morning of the family meeting, the residents and I prepared the conference room for the solemn event. We took down streamers and popped balloons from a recent staff birthday party. A fresh box of tissues was opened and placed at one end of the table; it was the only decoration needed for this next event.
The patient was a previously healthy middle-aged woman who was still trying to make sense of the devastating news she had received a few weeks ago--stage IV triple-negative breast cancer. They tried to act quickly; she had one dose of pembrolizumab, but her disease subsequently progressed. She eventually came to the hospital when massive pleural effusions made it frighteningly difficult to breathe. Thoracentesis brought some symptomatic relief, but her effusions were rapidly reaccumulating. She wanted to do everything; this could not be the end.
Since she had been admitted to our team, mutterings of a “goals of care discussion” came up almost daily. As my attending put it, “things weren’t looking good,” which everyone seemed aware of, except the patient. My attending encouraged me to join the family meeting. “It will be a good learning experience.”
Everyone took their place at the table. The aunt, the cousin, the friend. The oncologist, the hospitalist, the resident, the medical student. It had taken 45 minutes, two nurses, and an extra dose of Ativan to get the patient from her hospital bed to the conference room. Finally, she sat poised at the end of the table, enrobed in blankets and IV tubing, the nasal canula precariously in place at her nares.
Before anyone felt ready, the oncologist began. “You knew from the beginning that your disease was advanced, but we were going to try…but things have progressed…at this point, treatment might just make you more sick…what do you want?”
“So you’re telling me I’m going to die?” Her breathing became even more shallow, the pitch of her voice creeping upward as she finished asking the question nobody wanted to answer. Her family couldn’t make eye contact with her.
“We talked about this…”
There were more mutterings of “what do you want” and “what matters to you,” but I’m not sure we ever heard an answer. A parallel conversation continued about the feasibility of home hospice. In the background, we heard the soft weeping of her sister who had been phoned in from many, many miles away. The group consensus was that the patient’s needs were now too great for her to ever return home.
Without too much resistance, the patient surrendered. Her posture softened and her breathing slowed as we discussed “comfort care” and “transfer to a hospice facility.” She was officially “DNR, DNI.”
After the meeting, my resident asked me what I thought of the meeting. I had been taken aback by the stern, pragmatic approach of the oncologist. My heart hurt for the patient, whose fear and vulnerability had been so palpable early in the meeting. I could not understand what had helped her cross over to acceptance. Had someone really said something that changed her perspective? Had she just become too tired to fight? I questioned if our team should have been more direct in addressing her prognosis in the days prior.
I found Schubert’s Der Tod und das Mädchen coming to mind as my thoughts about the meeting percolated over the next few weeks. In the introduction, the piano is challenged to softly deliver a theme full of solemn, heavy chords, much like her doctors trying to speak honestly about a harsh reality through the most tender of terms. By the time the piano reaches its cadence, it seems there could be no question about what is to be done, but then the maiden speaks. Her childlike and futile plea was too akin to the patient’s own disbelief around her prognosis. The maiden does not even get a chance to finish her cry for help before the reasoning voice of the medical team creeps back into the piano, like a gentle ocean wave washing over any effort she may make to resist death’s pull, because they know it will only add to her suffering.
Then death has its chance to speak. Like her disease, it ploughs forward with its emotionless drone. But underneath it, the reasoning voice of the medical team is still there, providing harmonic context to the song of her disease, perhaps making it palatable enough that she could engage in this brief but intense conversation with death. It ultimately reaffirms what we all now know to be true; she will, eventually “sleep gently in [the] arms” of her disease. But death doesn’t get the last word. The piano returns with the same theme from the introduction, but now in the relative major key. It shares the same news, but now with reassurance that it will not be a frightful end, but rather one of dignity, comfort, and peace.
The last time I saw the patient, she was resting comfortably in her hospital bed. The now adequately titrated oxycodone seemed to have softened her anxiety. With a chest tube in place to drain her effusions on a regular basis, she was breathing more easily. Providers and family no longer tiptoed around her reality; our minds were now free to attend to her comfort. Her cousin was at the bedside performing reiki. The smell of lavender wafted above all the usual hospital odors. Death no longer seemed to have such a frightening grip over her. Her initial anxiety and denial seemed to have transformed to peace and acceptance.