This is Part 2 of a multi-part series.
Approximately 1 week into her ICU stay, when my mom wasn’t making any progress on ventilator weaning, I was called by the palliative care team asking if they should “formally” consult. They had been visiting daily but not officially consulting – introducing themselves as “Jean’s friends” – who happened to be from palliative care. The ICU attending had tacitly agreed to the consult, telling the palliative care team, “whatever Jean wants”. My initial reaction was no, we didn’t need that, we knew that she potentially could have a poor outcome and were talking openly about it. If anything, I told the palliative care team, my dad needed a ray of hope, not a discussion about the “what if’s”. It was an eye-opening moment for me – to consider the “meaning” of requesting an official palliative care consult and to confront my own perceptions and biases, despite intellectually knowing better. Was I falling into the same “it’s not time yet” mindset that frustrates us so frequently as palliative care professionals? Why would making it “official” be any different from the daily visits that the team was already doing? How would my dad and my siblings perceive my request for an “official” palliative care consult? Would they think that I had “given up” by recommending a palliative care consult? Why didn’t I trust what we do so well in palliative care – starting with assessing the patient (if able) and family understanding of the current situation and addressing identified needs? Why couldn’t palliative care be as much about “hoping for the best” as it is about “planning for the worst”? I told the palliative care team that they needed to “hit me over the head” if I was in denial or not thinking rationally about this clearly reasonable request.
Why did this question give me such pause? At the time of her hospital admission, my mom did not have a terminal diagnosis. While she clearly had a chronic disease, it was just that, chronic. She wouldn’t have been described as having an “advanced illness” or a “serious illness” –phrases that we use in describing the target population for palliative care. In fact, despite her Parkinson’s diagnosis, she was quite functional, both physically and cognitively. Her current situation was thought to be more due to a medication reaction than to her underlying disease process. That said, here she was in the ICU, failing to wean from the ventilator. She was the epitome of an “uncertain prognosis”. Ultimately, I agreed to an “official” palliative care consult – both to legitimize the visits that they were already making and recognizing that even as a palliative medicine expert, I had significant “blind spots” when it became personal, not realizing the unspoken assumptions and perceptions that are associated with palliative care. And, as it turned out, the palliative care team, after visiting with my dad that same day decided not to formally consult, continuing to visit as “Jean’s friends”, deciding that they would do more good in maintaining that relationship than in announcing that, given my mom’s potentially grave prognosis, they were now “officially” consulting.