Today was a rewarding day. I was called by a primary care team to assist with the care of a 25 year-old girl who is dying of cancer. This was a situation that, as unfortunate as it was, had been made more complicated by growing distrust on the part of the family. As the resident told me her story, he mentioned that the patient was being seen by the Palliative Care Service. This was unusual, since the same pain specialist oversees both the Palliative Care Service and the Chronic Pain Service.
I agreed to come, not as a formal pain consultant (since my boss was already technically on the case), but as someone that might visit with the family and offer another perspective. This was mainly a psycho-social consultation. I did meet briefly with the patient, but spent most of my time in the family room with the father, the rabbi, and the primary care physician. When I arrived, they were on the verge of signing Do Not Resuscitate/Do Not Intubate orders, and the father wanted to make sure that in spite of signing the paperwork, the family would still have a voice in the medical care.
This, of course, was easy. I assured him that these measures simply meant we would not take aggressive measures to unnaturally prolong his daughter’s life. They absolutely would not change the quality or quantity of their interaction with their physicians.
I spent the next thirty minutes asking about their goals and expectations, listening to their fears and frustrations, and assuring them that we would in no way abandon them in the face of the daughter’s rapidly deteriorating health. I say “them” because in this case, my role of physician seemed to explicitly extend to include the patient, her parents, and the rabbi. We clearly definited several goals: comfort & pain control, avoiding sedation, tolerating oral medications, being able to go home.
Tangibly, I was rewarded by being able to accomplish what the primary team and the regular Palliative Care Team had been unable to do, that is, to adjust the pain regimen that might facilitate comfort and be a step closer to home. I attribute this not to any special skill, but to being willing to take the time to build a “therapeutic alliance” which involved the family’s trusting me that I had no interest in pushing the patient out of the hospital. I clearly expressed that in the setting of rapidly progressing cancer, avoiding sedation might conflict directly with comfort, but that we would do everything possible to accomplish both.
Practically, this meant increasing the transdermal fentanyl dose, changing the intravenous pain medicine to avoid some untoward side effects, and supplying some potent non-intravenous medications as a trial run for out-of-hospital care.
But I felt most satisfied when I rose at the end of the conversation and the father and the rabbi both stood and eagerly shook my hand and, with damp eyes and choked voices, emphatically thanked me. Here I was, telling them that yes, the daughter was dying, and that I could keep her comfortable but maybe not awake and she may never leave the hospital, and they were thanking me. That’s ironic. But I also told them that I would walk with them, that I wouldn’t abandon them, that I cared about what was important to them, and that I understood them; and they responded to that. It was here, in practicing the art of medicine, that I connected with the family’s experience at the same time that I connected with physicians who, through the millenia millennia, have eased suffering and done no harm. And that made my day.
Mulberry Street 