Jean Kutner, MD, MSPH

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Posts by Jean Kutner, MD, MSPH

Concurrent Palliative Care-Peace of Mind in the Setting of an Uncertain Prognosis; Part 3

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?

Concurrent Palliative Care-Peace of Mind in the Setting of an Uncertain Prognosis; Part 2

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.

Concurrent Palliative Care-Peace of Mind in the Setting of an Uncertain Prognosis; Part 1

This post is Part 1 of a multi-part series.

Concurrent Palliative Care – Peace of mind in the setting of an uncertain prognosis

Jean S. Kutner, MD, MSPH

I was in Asheville, N.C. for a professional meeting when I received a call from a medicine resident at our hospital saying that she was transferring my mom to the ICU for closer management of her intractable dyspnea (shortness of breath). My mom, who has an atypical presentation of Parkinson’s, had been admitted to the hospital with tachypnea (rapid breathing) and respiratory alkalosis (low blood pH caused by rapid breathing) ~ 5 days earlier. While she had been having odd episodes of shortness of breath for several months prior to this hospitalization, her Parkinson’s had been relatively mild, with no episodes of aspiration and good functional status. She had seemed to be improving when I left town and I had fully expected that she would be discharged by the time I returned home. Things clearly had changed for the worse. Speaking with my dad did little to relieve my growing anxiety – he told me that she had developed tachypnea and respiratory alkalosis again, had exceeded the monitoring capacity of the regular medicine unit, and was being transferred to the ICU to facilitate higher benzodiazepine dosing to attempt to control what was eventually diagnosed as a respiratory dyskinesia, thought to be a rare side effect of the carbidopa/levodopa she was taking to treat her Parkinson’s symptoms.

While I had complete trust in my medicine, pulmonary and neurology colleagues who were attentively caring for my mom and monitoring the situation, I felt helpless without having eyes and ears ‘on the ground’. It didn’t take me long to reach out to my palliative care colleagues for help. Who better to quickly assess and inform me about a situation involving an apparently deteriorating clinical situation and prognostic uncertainty? I sent a text message to our palliative care advanced practice nurse – “my mom’s being admitted to the ICU, I’m out of town, can you find out what’s going on?” Reaffirming the wonderfully supportive colleagues we have in this field, she and the rest of the palliative care team quickly went to the ICU to check on my mom – and to see how my dad was doing. Their call to me was at the same time chilling and reassuring – “she looks really uncomfortable – we told the ICU team that we recommend intubation for her comfort”. I’ll bet that is one of the few times that the ICU team has heard palliative care recommend intubation. New mantra – if the palliative care team recommends intubation, the patient probably really needs it.

I stayed in close contact with the palliative care team over the next day as events evolved and I was able to work my way back to Denver from Asheville. It gave me great peace of mind to know that I had trusted eyes and ears present who were looking out for both my mom’s comfort and my dad’s well-being.