This is Part 3, the final part, of a multi-part series.
My mom remained in the ICU for a total of 3 weeks, failing extubation twice due to laryngeal edema requiring emergent re-intubation and eventually requiring a tracheostomy in order to facilitate ventilator weaning. She finally was able to wean off the ventilator after 3 weeks and was discharged from the ICU to step down and then acute rehab after 3 ½ weeks. The tracheostomy was successfully removed ~ 10 days after she left the ICU. Her Parkinson’s medications were changed and she has not experienced recurrence of the rapid breathing that precipitated her hospitalization. The palliative care team continued to visit with my mom and dad regularly, offering support and comfort and providing me with updates on my mom’s medical condition and comfort as well as my dad’s physical and emotional well-being. It was incredibly reassuring to have this additional layer of support and assistance.
My mom is now in a subacute rehab facility and gradually recovering from the significant physical debilitation she suffered as a result of her prolonged ICU stay. My mom, fortunately, doesn’t remember any of her ICU experience (although she does have bad dreams about breathing, interestingly). Given her atypical disease presentation and course to date, we don’t know exactly what the future holds, as we rarely do. I do know that palliative care was an essential component of our coping with her “uncertain prognosis” – providing me with peace of mind and offering warm, caring, nonjudgmental support for my dad, essential for his coping with those difficult days in the ICU. In this case, the “hope for the best” was the part of palliative care that my dad needed – as he was already “preparing for the worst”.
This experience makes me wonder how many other patients and families who are similarly experiencing an “uncertain prognosis” do not have the benefits of instant access to an expert palliative care team. I feel incredible fortunate that my mom was hospitalized in a setting where such access was seamless – afforded because I am privileged to work with an incredible team of palliative care professionals. While this may be only an “n of 1” trial of the experiences of a single a family in distress, our experience reinforces the beneficial role of concurrent palliative care in these uncertain situations. The challenge remains – how do we communicate this and ensure widespread access?