Practicing palliative medicine during the time of COVID-19 could easily be framed as stressful, chaotic work, but in the midst of so much suffering, it has offered an incredible opportunity to serve and help others.
I practice in Austin, Texas, where the hardest-hit population has been the immigrant community, especially those working in construction and food service. As I write this, our city's surge is slowing down, but for our palliative care team, the surge continues as deaths lag behind admissions.
Inpatients with COVID-19 obviously have significant symptoms burden, but attending to their anxiety and loneliness during a time when visitors are forbidden is where palliative care is making the biggest impact on a daily basis. In addition to patients, family members who are unable to see their loved ones need the extra support that palliative care can provide. And frankly, palliative care can be a support to the amazing hospital nursing team.
Providing that added layer of support speaks to what palliative care does best, but patients' and families' first response to hearing that palliative care will consult is often fear. For others, there is frank lack of knowledge of what the term palliative care means. It seems as if half of my patients have never heard of palliative care, and the other half think it must mean hospice and that death is coming. I find a major part of my first visit is taken up just explaining what palliative care is and how it can help during a pandemic.
I begin by explaining that palliative care is specialized medical care for people with serious illnesses focused on providing patients with relief from symptoms, pain and stress. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is something family physicians do every day. Caring for patients with chronic, serious illness and helping them through complex decisions up to the point of death is something family physicians do well.
Hospital-based specialty palliative care in the time of COVID-19, though, is like nothing we have experienced before. Prepandemic palliative care really relied on the key skills all family physicians possess: knowing the patient's goals and preferences, understanding the options of complex medical disease, and helping negotiate best options through shared decision-making. Palliative care succeeds by understanding patients in the context of their families or support systems and through the use of consummate communication skills and empathy. Yet in the pandemic era, families are not allowed to visit. Or visitations may be limited until the patient is near death, and even then, to only one or two family members. The prognosis is hard to determine. PPE limits communication and empathy expression, and during a surge, systems are overwhelmed. The simple act of holding a hand and being there for the patient or a loved one is hard to accomplish.
So, what is palliative care in a pandemic? Going back to the broad, modern definition, palliative care is the added layer of support to help both the patient and family. A COVID-era palliative care consult is a message that despite a system in surge, where intensivists and nurses may not be able to attend to every patient or family need, support will be given.
My last few months have been spent learning to overcome these limitations. In the earliest days of the pandemic, the outlook seemed grim. China, Spain and Italy reported mortality rates as high as 80% among patients who were admitted to ICUs and intubated. Working with ethics committees and hospices to prepare for the worst was an angst-ridden month. Initially we worked hard to bring just-in-time palliative care communication skills to all clinicians to give teams language that works to address goals of care and to create systems for advance care planning for all admissions. We developed guides to care for those who were imminently dying. Colleagues across the country helped palliative educators from Seattle (a city that experienced one of the country's first surges) create a VitalTalk communication guide, which I highly recommend to all family physicians who are about to enter a surge.
Our team's first COVID-19 death was a young father of small children. Despite extracorporeal membrane oxygenation, death was clearly imminent. The key challenges were not how to manage symptoms; it was really about how to allow the family to be present and say goodbye in a time when no visitors were allowed.
A more recent patient death added the challenge of helping family members be "present" at the time of death from across the street on the fifth floor of the parking garage with a direct view into the patient's room, where visitors were not allowed.
Having the right language to guide the family at that moment is key. Ira Byock, M.D., teaches that before death, there are four things that matter and need to be said:
Helping the teams guide families through this conversation via video or mobile phone is challenging, but it is a skill that can make a huge difference. Ideas on how to incorporate VitalTalk's COVID-19 tools and other resources into your practice are available in the AAFP's self-study module Navigating Difficult Decisions, which includes free CME.
Meanwhile, we also are providing palliative care for patients struggling with diseases other than COVID-19. We must help prevent isolation and fear in these patients, as well. And around the country, our hospice medical director colleagues have challenges of acquiring PPE (which an upcoming collaboration with Project N95 will address) and meeting federal regulations, and even negotiation to get into a nursing home to see their patients. Our outpatient palliative care clinics have become master-users of Zoom to bring care to patients who are homebound.
Thankfully, social distancing efforts bought us time to learn. Better care protocols, remdesivir, convalescent plasma and steroids as treatment options have lowered ICU mortalities to 20% to 30%, while hospitalization mortality rates are as low as 1% to 2%.
So, now I think palliative care for most is a three-step process. In the first days of hospitalization, we are helping with complex advance care planning conversations. Who is able to represent you if you cannot speak for yourself? In the next few days, we are primarily an added layer of support to the family as the ICU course may go for a few weeks, and we add communication and emotional support. Finally, in that subset of people who are not improving in the third and fourth week, we can support difficult conversations about next steps and matching care to patient and family goals. What is unique to palliative care is that we are doing the majority of this work with patients who are intubated and unable to communicate to us directly except in those brief encounters before intubation. For a field based on communication, this is a different time.
What is especially important for our team now during the COVID-19 pandemic is our role as an added layer of support to family who cannot be present, as well as to staff, to prevent burnout. For families, we can be a source of answers to the day's questions and we can help manage difficult emotions. We are also finding ways to bring families into the room with the patient via Zoom, WhatsApp or Google Hangouts.
For our nurses, part of our job is to bring them the story of the patient by facilitating discussions with family using the University of Alabama-Birmingham's Meet My Loved One Document, which we post at the door to the room for all caregivers to see. Recognizing the nurse who is having a hard day and giving a few minutes of emotional support is also a critical part of our daily work now.
Palliative care in the time of COVID-19 is not the palliative care we have always practiced. In many ways, we are working harder than ever before. But what a time to make a difference, and what a time to care for families.
Paul Tatum, M.D., M.S.P.H., is a clinical associate professor in Dell Medical School at the University of Texas in Austin and program director of the hospice and palliative medicine fellowship.