Spring 2020 seems a lifetime ago. Although I intellectually had prepared myself by studying the evolving information about COVID-19, I was still overwhelmed the first few days when I covered a COVID surge ICU at my hospital. I had over two decades of critical care experience, including caring for victims of the Rhode Island Station nightclub fire in 2003 and preparing my ICU for Ebola in 2014. Now, I was struggling to keep the patients straight in my head as their presentations, medical histories, medications, and ventilator settings blended. Nearly all were Latinx and shared the same risk factors for severe COVID-19: hypertension, diabetes, and obesity. All except one were intubated. I was constantly trying to remember details about their lives to help me organize, catalog, and individualize; yet without family members sitting by their bedsides, I confused the patients. Is Mr. C. the one whose son speaks fluent English? Is it Mr. R. whose wife is home with a mild case of COVID-19? Which one is the bus driver who contracted COVID-19 while on the job for the local transit authority?
But wait, why am I in the ICU at all? A few months before COVID-19 hit the Northeastern U.S., I made a career pivot, stepping away from my position as an ICU medical director. I made this choice to alleviate significant burnout and to have a greater home presence with my family. My new position did not even include covering the ICU... or so I thought. As COVID-19 loomed, my department chair asked which of us with critical care training, boarding, and experience would be willing to join the critical care division, if needed. I enthusiastically volunteered, eager to contribute at a time when most days had become eerily quiet. Soon, hours were spent repetitively training how to don and doff PPE, and days were spent sifting through the mass of literature being disseminated about how to treat COVID-19, while all the while watching increasingly grim news depicting over-stretched critical care units and resources in Italy and New York City.
In my 24 years of ICU practice, I have relished the interactions with patients and their families – hearing their stories, connecting with them on a personal level, and seeing them through a crucial time. More and more, this facet of critical care provided satisfaction and rooted me in my reasons for becoming a physician — caring for patients, alleviating suffering, and restoring health. Part of my burnout symptoms were fueled by a sense of futility and fear that the outcome of our care was not well matched to my patients' or families' expectations. Prolonged hospitalizations, multiple procedures, and transfers to LTACs or SNFs only to bounce back to the ICU provoked my own feelings of helplessness and frustration. Explaining this possible (or likely) cycle during patient/family meetings was time-consuming and emotionally draining but also restorative; I can nudge an estranged family to temporarily set aside their differences to focus on the patient, or a family can overwhelm me with gratitude when I just listen and take the time to answer their questions. Interactions with palliative care colleagues during such meetings caused me to toy with the thought of pursuing formal palliative care training. I learned so much from how these colleagues conducted family meetings: listening, querying, and framing the key questions to better align care with the patient's values. While I was inspired, the thought of a return to fellowship at my career stage with the inherent disruptions to practice, income, and life itself seemed too great a leap. COVID-19 provided me the courage to take that leap.
About a week after my first COVID ICU experience, I was again covering a surge unit, this time an open, converted PACU. The open nature relieved us of the time-consuming process of donning/doffing PPE before entering or exiting patient rooms but subjected us to hours on end of head-to-toe PPE without hydration or bathroom breaks; at shift's end, we were completely spent and likely hypercapnic from N95 mask use. In this setting, I met one indelible COVID-19 patient and her daughter who spurred me to act on my nascent interest in palliative care. Mary, my 70-year-old Black patient, had the familiar history of diabetes, hypertension, and obesity, and was day eight into her critical illness with respiratory failure and severe ARDS due to COVID-19. She had been intubated within 12 hours of hospital admission and was now sedated, pharmacologically paralyzed, and requiring proning for >24 hours at a time due to her recurrent cardiopulmonary instability when turned supine. Mary had suffered several complications during her ICU stay, including ventilator-associated bacterial pneumonia, acute kidney injury, coagulopathy, and encephalopathy. Due to COVID-19 visitor restrictions, Mary's daughter, Linda, had not been able to visit. Despite Mary's severe critical illness, my first telephone conversation with Linda was quickly subsumed by her requests for high-dose vitamin therapy for her mother; Linda had heard about this potential therapy from a family member in another COVID-19 “hot spot” where a practitioner there was administering such treatment with “extraordinary” results. Why were Linda and I spending all our time discussing an anecdotal, non-evidence-based, akin-to-snake-oil treatment when Mary was likely ultimately dying of severe COVID-19 critical illness? A few days later, my team and I met Linda and her family via Zoom and I quickly surmised their lack of trust in us and our top-rated academic medical center, particularly after we somehow managed to dissuade them from insisting on a transfer to another institution – a transfer that I feared could be so destabilizing as to risk death in transit. That very day, for the first time in six days, Mary had tolerated supine positioning and a slight diminishment in ventilatory support. Just prior to turning over Mary's care to my incoming ICU colleague, Linda and I discussed the likely need for Mary to receive a tracheostomy should life-prolonging treatments be what the family believed Mary would continue to want. In that conversation, I also reminded Linda that her mother had herself initially refused intubation but had been persuaded by family to accept it in the face of her rapidly deteriorating hypoxemic respiratory failure due to COVID-19. Linda explained that she knew her mother would not approve of either the current aggressive treatments or the quality of life they yielded, but that she was also extremely pressured by her family members to continue the course and not “give up” on her mother. I wished that Mary's family could see her – the endotracheal tube and ventilator to which she was connected, the constant care and interventions provided by her nurses, the edema of her face and other areas of her body, all the result of her prolonged critical illness. COVID-19 prevented them from seeing this, leaving Linda with only brief daily glimpses via an iPad screen.
“Part of my burnout symptoms were fueled by a sense of futility and fear that the outcome of our care was not well matched to my patients' or families' expectations.”
Several weeks later, I again cared for Mary. She had improved enough to undergo tracheostomy and PEG but had not since awakened or aroused despite long-term discontinuation of sedative agents. Mary's head CT revealed multiple embolic strokes, and her EEG suggested metabolic encephalopathy. She had been transferred to an LTAC but had recently been readmitted to our hospital with fever, leukocytosis, and erythema around the PEG. When imaging revealed dislodgement of the PEG into the peritoneal cavity, she was booked for an urgent exploratory laparotomy. Assigned to be Mary's OR anesthesiologist, I contacted Linda for telephone consent. She remembered me from our Zoom conference and sadly told me that in the eight weeks since her mother's hospitalization, she had first been allowed to visit just a few days prior when visiting restrictions at the LTAC were liberalized. During that visit, Linda noted that her mother's eyes were tracking faces; a nurse, she said, observed seeing Mary move her right hand, but no other limbs. I gently asked Linda if she thought that this type of existence was what Mary would want. Linda replied “no,” but again reiterated that her family was insistent on full life-prolonging treatments. She shared her frustration about the PEG setback and expressed a wish that the surgery be successful in order to get her mother back on track to recovery. After obtaining informed consent for general anesthesia, I hung up, disturbed. I recalled the documentation of my hospitalist colleague on Mary's night of admission when she was short of breath with COVID-19, when her breathing worsened, when he discussed intubation with her. At the time, Mary had clearly articulated that she did not wish to be intubated, even if she would die without it. Since that time, Mary's “voice” had been gone. Although Mary's family clearly loved her, the primary means by which they could express this love was through saying, “keep going.” The current medical system was failing that love and, most importantly, failing Mary. How might this story have changed had palliative care been involved early in Mary's care – in her first days in the ICU, in her first hours in the emergency department, or even before she became sick as a part of community COVID-19 preparedness?
Treating victims of COVID-19 has evoked a wide variety of emotions: excitement in a shared sense of purpose, awe at the self-sacrifice of colleagues, pride in collaboration across the scientific community, and sadness at the suffering and loss of so many lives. For me, the pandemic not only disrupted critical care as I knew it but also highlighted important essentials: having advance directives in place, pursuing advance care planning conversations with seriously ill patients and their families, facilitating the physical presence of family at their loved one's bedside, and building trusting partnerships with those family members. With these essentials, we can hear the patient's voice when she is unable to speak, we can affirm the decision that she would make, and we can show the family that “letting go” and allowing her to die in the manner that she chose is a way of expressing love.
This fall, on the same day that my son began college remotely, I began remote classes in a palliative care Master of Science program as part of an innovative fellowship targeting mid-career physicians. A successful path will provide me comprehensive training and board-eligibility in palliative care, a specialty focused on enhancing quality of life and diminishing suffering. While I am and always will be an anesthesiologist and intensivist, I see how these skillsets can not only keep patients safe and comfortable in the OR or ICU but can also translate into reducing the physical and psychological distress of seriously ill patients and their families. Moreover, as a palliative care physician, I will have more sophisticated skills to better help my patients articulate their goals – to help them find their “voice” as well as to support families to better hear and follow that voice, particularly should it say, “If I am dying, please don't let it be ‘on machines’ or in an intensive care unit.”