Hard Lessons: Palliative Care in the COVID Era

HARD LESSONS: PALLIATIVE CARE IN THE COVID ERA Monique Schaulis, MD, MPH

This spring, while I was working a shift in the ER, my mother-in-law texted me to report that I was mentioned

in the San Francisco Chronicle. Surprised, I went to check it out. I found an extensive article on how COVID 19 has affected elders in the Bayview neighborhood. One of the patients profiled was Wilbur Morris, with whom I had worked the month before (in what I now think of as the early COVID era). Mr. Morris was an octogenarian who enjoyed snazzy clothes, parties, and regular jogging, who most likely contracted COVID 19 at a birthday party in early March. I was on the palliative medicine team that consulted during his many week hospital stay. We first became involved when he was intubated in the ICU. Early prognostic data from China and Washington State looked dismal for patients his age on mechanical ventilation, and our palliative team shared this bad news with his family. I worried to myself that his final days on the ventilator might be worse than death. His family and the medical team experienced the uncertainty together, hoping for the best while planning for the worst.

Mr. Morris was not my patient in the pre-COVID way; I never touched his body nor held his hand. He would not recognize me. Conservation of PPE and infection control made the experience entirely virtual. Our palliative care team had to quickly find new ways to use technology to connect with families. Ever since I began practicing palliative medicine, the gold standard has been the in-person family meeting. We normally would all gather in a conference room or by the bedside to discuss the road ahead. But COVID 19 created uncharted territory: no visitors for the patients, no family meetings; relatives were often infected or quarantined themselves. As a team, we went into technology overdrive, trying to figure out the best way to bring people together. What would it be like to give bad news by video? What platform would work well, be compliant, and be simple and ubiquitous enough that even technologically unsophisticated people could use it? How would we link in an interpreter if we needed one? We struggled with microphones in the ICU, texting links, and crashing platforms.

We went from no telemedicine to all telemedicine in a few weeks. In those early days, we just had to go with what we could get done. The Chronicle journalist wrote about me holding my iphone up to the window of Mr. Morris’ ICU room so the Morris family could see him. As I stood there pressing my phone to the glass, they would pray for him while I silently witnessed these powerful moments. Later, I realized that I was doing what we always try to do in palliative medicine: build connection.

After work, I shared with my own family, “the best thing I did at work today was hold up a cell phone.” During normal times, our palliative care team begins most visits with an explanation of what palliative care is. It is rare that people know how we add an extra layer of support for patients and families. But Mr. Morris’ situation really helped drill down to some fundamentals of palliative medicine. While the intensivists and hospitalists kept his body alive, palliative care helped take care of his village, talking through hopes, worries, and easing the existential distress that comes from isolation and fear. At the same time, through our conversations with family, we ensured that the grueling treatment he endured was consistent with his personal values. The means by which we did this work was completely different than just a few months prior, and yet the end result was much the same.

Though we are in many ways more isolated, wearing masks and face shields and meeting on video, COVID 19 has also brought patients and staff together through an increased collective sense of vulnerability. When I say to families, “I wish things were different,” I share that sentiment in a whole new way. The virus has made it too easy to imagine myself being the daughter on the cell phone, trying to catch a glimpse of her dad in the ICU. And as my patients' families juggle the competing demands of a sick parent, work, and their own children, my own phone chimes with texts from my kids who are managing school at home on Zoom.

As a COVID era physician, I have expanded my skills. I have held iPhones at windows for prayers, supported a peri-extubation mariachi performance, and have had to reassure an anxious child that he wasn’t going to accidentally infect and kill his grandparents. In every specialty, we have remade our tools at breakneck speed to fit the times. The professional and the personal have become more intertwined than ever.

All of us can’t wait for the COVID pandemic to be behind us. But when it is gone, I wonder what we will take forward? I know that the telemedicine skills we have been forced to develop will forever change the practice of medicine. With a focus on quality, as well as attention to inequities, we will be able to reach many more people, keep our population healthier, and support each other more effectively. No longer will homebound people or those in rural areas be unable to access specialists like palliative teams. On the policy level, reimbursement for telehealth, and nationwide access to wifi will be key to ensuring that this huge advance is sustainable.

Finally, my great hope is that COVID 19 will have been a nationwide wake up call to the importance of public health. That the collective trauma we have experienced will yield both emerging leaders in health and in government who will advocate for sound science based policy and an engaged citizenry to support them. That this “lost year” for our schoolchildren will not hold them back but push them to stand up and say that they will never again accept what we have witnessed this year.

Monique Schaulis MD, MPH is an emergency and palliative care physician at Kaiser San Francisco, and President-Elect of the SFMMS.