Programs Have Stepped Up to New Roles—Where They've Had Sufficient Staffing
By Larry Beresford
At the start of the viral surge of the novel coronavirus COVID-19 in New York City, Dana Lustbader, MD FAAHPM, chair of the Department of Palliative Care at ProHEALTH, an OPTUM multispecialty accountable care organization serving the metropolitan area, volunteered to put on full personal protective equipment and take 14-hour intensivist shifts in the intensive care units (ICUs) of Northwell Health in Queens. There, she worked alongside volunteer physicians who had come to New York to help in the crisis.
Lustbader, who is board certified in both critical care medicine and hospice and palliative medicine, compares her ICU experience in a 300-bed hospital turned 500-bed COVID facility to being in a war zone. "Putting on a face mask and face shield raises everybody's stress," she explained. "It's very hot under all that and it's hard to wear all day. In the beginning, we weren't sure how to manage this new disease and our patients' conditions were changing so rapidly."
But she continued to weave her palliative care expertise into her work, helping her medical colleagues improve their skills in goals-of-care clarification by jointly facilitating family meetings. "My own routine evolved into rounding in the ICU for 5 hours at a stretch and then spending a couple of hours on the phone doing virtual visits with families so they could see their loved ones in the ICU because no visitors were allowed." She also continued her outpatient palliative care practice, which quickly converted to telemedicine.
The COVID-19 pandemic has been world-changing in many ways, not the least of which has been in the way it has redefined the role and contributions of palliative care and raised awareness of hospice and palliative medicine's (HPM's) essential contributions to health care—especially in a crisis. Much of the focus in hospital care for COVID-infected patients with severe respiratory distress was on the use of ventilator therapies, which often had poor outcomes. But there was little time to clarify whether the COVID patient would have wanted ventilator support if it meant dying alone in the hospital under quarantine.
Some hospice programs have reported reduced referrals from the community and a reluctance by some families or nursing facilities to allow them in to see patients, and many palliative care clinics and home-based services converted to 100% televisits. But in hospitals in the hot spots, hospice and palliative care teams were pressed into service any way they could be made to fit.
Palliative care also was called to a play bigger role in discussing clinical issues with other providers and participating in ethical discussions about issues like managing scarce supplies of ventilators. HPM professionals offered support and debriefings to overwhelmed frontline professionals and incorporated telemedicine in new ways to facilitate a variety of conversations.
Lustbader, who has extensive experience with incorporating telemedicine to palliative care, said telemedicine has more than proven its value and utility for palliative care teams—whether it's a family meeting with geographically dispersed loved ones via Zoom, a goals-of-care conversation with family members who aren't able to see their quarantined loved one in person in the hospital, or even conversations with hospitalized patients from a nursing station down the hall—and is effective at reducing the face-to-face encounters with hospital staff. As long as the payment waivers for telemedicine visits adopted for the crisis continue, she said, virtual encounters will be a big part of palliative care's future.
Parallels with HIV/AIDS
During medical school, Lustbader spent her summers at the University of California, San Francisco Medical Center, near one of the epicenters of the AIDS epidemic in the 1980s. When she arrived in New York City for residency, she wanted to do more to contribute to the healthcare system's response to AIDS. She sees a lot of parallels between that era's dramatic viral epidemic and today's, including an initial glaring lack of information about the disease and its causes and modes of transmission, and the resulting fear-driven reactions. But the scale of COVID, at least in New York City, has been so much greater.
"At that time, we knew it was important not to get stuck with a contaminated needle and to wear gloves," she said. But transmissibility is greater for COVID via droplets and aerosol. That may be why some hospice or palliative care teams have been discouraged from entering patients' rooms, in an effort to decrease spread of the disease, and from admitting COVID patients to hospice programs or facilities. "With COVID, most of those who have died have been elderly, often with preexisting chronic conditions," she said.
Carla Alexander, MD FAAHPM, palliative care specialist and assistant professor of medicine at the University of Maryland School of Medicine Institute of Human Virology in Baltimore, provided hospice care in the early days of the AIDS epidemic. "No question, living through the initial fears of contagion taught me how to cope when others around me might be distressed or frightened," she said.
"During the first 6 weeks of the COVID crisis, I walked around our medical center and talked to all sorts of people throughout the hospital—from doctors and nurses to the people who cleaned the floors." She heard a lot of panicked feelings about contagion among people who hadn't experienced anything like it and was able to stay calm and remind them to keep a safe distance from others.
She also learned that video meetings with inner-city families seemed to give them enough emotional distance to open up about their feelings. "I've been amazed at the quality and depth of commitment to having these really difficult and important virtual conversations," she said. "We have brought families together on Zoom to talk about the four things that matter most," the model popularized by Ira Byock.1
More Palliative Parallels
When the AIDS epidemic began in the mid-1980s, most palliative care services were clustered around patients living with cancer, said Bernard LaPointe, MD, of the Palliative Care Services at Jewish General Hospital in Montreal. "It took a lot of self-reflection and lobbying to influence our practice to incorporate AIDS patients. One of my closest friends died in the hospital after being denied palliative care because he had AIDS."
Another comparison between the two viral crises is the fact that both had their biggest impact in marginalized communities. "We have universal health services in Canada, but there are still great disparities in care," he said. Today, COVID disproportionately affects the disenfranchised; people of color; and the elderly in care homes, those with dementia, and others with special care needs.
At Jewish General Hospital, a number of wards were dedicated to COVID patients. The palliative care team just clicked into helpful roles, with one team working in the hot zone and another in the green space (a place where patients who are not known to have COVID are treated). "We offer music therapy, using various technologies, and virtual consults with psychologists. These and other tools allow for real communication—not the same as in person, but far better than nothing. We also have learned how to use the tools better," LaPointe said.
One of the most difficult challenges is the absence of family caregivers on COVID wards where no visitors are allowed, LaPointe added. "We developed FaceTime® connections and a hospice ward in the cold zone where dying non-COVID patients were allowed to put the names of three visitors on a list for in-person visits, one at a time. That was the only ward in the entire hospital where family visitors were allowed."
The pandemic also has highlighted gaps in health care, Alexander said. "I just had a meeting with the director of one of our community social service agencies and she said, 'All our families in the community are now talking about bereavement.'" Hospitals don't typically make an effort to connect families to bereavement services when a patient dies—unless the patient was enrolled in hospice care, she said. But a looming epidemic of complicated grief in the wake of COVID-related losses could place unprecedented demands on the system.
"What this experience has shown me is how much the world is different from the days of the AIDS epidemic," said Robert Arnold, MD FACP FAAHPM, chief of the section of palliative care and medical ethics at the University of Pittsburgh Medical Center in Pennsylvania. "There was a lot of fear in those days, but there wasn't this thing called the internet, with its tendency to magnify our bad impulses. Back then, there seemed to be more respect for science. Look at how the people from the AIDS advocacy group ACT-UP reached out to the National Institutes of Health to establish a dialogue. As a palliative care doctor, I worry about how our society seems less able today to learn from the science or come together in the search for solutions."
Another important issue raised by the COVID pandemic, with its disproportional impact on people of color, is the enduring lack of diversity in the field of hospice and palliative medicine. "We need to spend more time and effort reaching out to underrepresented people among our medical students and to gain better understanding of how they make their career choices and how to influence them to choose us," he said.
Longstanding disparities in access to food, housing, caregiver support, transportation, and other social determinants of health—not to mention reliable access to a broadband connection—also impact what palliative care can offer, he said. AAHPM's goals have long included the dissemination of palliative care teaching to enable primary care clinicians to do basic palliative care interventions. But on the frontlines of a crisis, all that can go out the window. "I think it is quite clear that for the foreseeable future, we need multiple ways to teach the communication skills used in palliative care," Arnold said.
In New York City at the height of the crisis, demand for palliative care far outstripped existing staffing. Three major hospital systems developed separate initiatives to recruit and deploy palliative care professionals from across the country to conduct virtual palliative care consultations and family meetings and offer support and debriefings to emotionally stretched providers in the hardest-hit hospitals.
At the Icahn School of Medicine at Mount Sinai in New York City, the PATCH-24 palliative care help line was created for the COVID surge within its system to supplement and augment the capacity of in-person palliative care teams and to support sites that didn't have one. PATCH-24 started with two physicians—Christopher Woodrell, MD, assistant professor of geriatrics and palliative medicine, and Claire Ankuda, MD MPH, assistant professor of geriatrics and palliative medicine—alternating 12-hour shifts. As volume increased, other doctors and nurse practitioners were brought on board to form a back-up pool responsive to call volume in real time, with medical students triaging the calls.2
"Our goal was 24-hour access to a palliative care clinician for anyone who was suffering, providing critical expertise in communication and symptom management," Ankuda said. A primary focus on supporting emergency departments quickly evolved from just teleconsults with clinicians to direct conversations with patients and families. But it was done via telephone lines, not video, which was more flexible, easier to mobilize in the middle of the night, and easier for patients and families to access.
"Our experience speaks to how the phone line is a sensitive tool to access where needed," Woodrell said. "Our volume was beginning to pick up until, all of a sudden, one emergency room (ER) line that had been getting busier and busier suddenly stopped calling." Ankuda was asked to go in person, so she jumped on her bicycle and rode over to the ER, where she saw 15 patients on the first day. The ER doctors had gotten so busy that even calling the help line had become difficult.
NewYork-Presbyterian Hospital/Columbia University Medical Center (CUMC) also issued a call for volunteers to assist with a seven-fold increase in demand for palliative care services, reported Craig Blinderman, MD MA FAAHPM, director of its Adult Palliative Medicine Service. CUMC developed a scalable virtual consultation model for e-palliative care consultations, staffed by out-of-state palliative care specialists, and mobilized a supervised group of advanced psychiatry fellows to offer assistance with goals of care and psycho-social support.3,4 "We have learned that in this crisis, we're all connected," he said.
"Are there other kinds of crises we can imagine, such as climate-related disasters, which could generate large numbers of individuals in need? And what lessons are we learning about the value of palliative care and how to incorporate it more widely into health care?" Blinderman asked. What if a national organization or other group mobilized volunteers, as was done in New York for COVID, and from there created an ongoing, up-to-date directory of providers who are able to respond to needs that come up anywhere else in the country (or in the world)? Such a network could distribute resources based on need or demand—including for small programs with minimal resources in rural communities.
"We've shown we can be great partners," Woodrell added. "The big message is that palliative care can be an important part of crisis response. Going forward, we need to continue to learn and share best practices."
Where Do We Go from Here?
"Palliative care's challenge with this pandemic has been to be able to pivot in a hurry, and never say no," Lustbader concluded. "We talked a lot about possible ventilator shortages, but we haven't talked enough about the shortage of trained clinicians to manage COVID surges." What will be the long-term impact on palliative care professionals from the standpoint of moral distress and PTSD? "I experienced PTSD during the crisis and had to unplug for a week," she said.
Other potential changes emerging from the pandemic could include telehealth no longer being considered rare or unusual and greater attention to advance care planning and advance directives.
"It's too early to draw too many parallels with AIDS activism," LaPointe said. "But we know we need to rethink and adopt new models and develop communities of care (that are) stronger and more responsive to urgent needs and calls for support. Palliative care physicians need to be easily accessible at 2 am. This pandemic forced us to think outside the box and to better understand our message."
"I think we, as a specialty, also rediscovered the profound frailty we share with our patients. The more exposed we are to mortality, the more our defenses come down," he added. "But it takes a lot of courage—and it takes the support of the team. We all say we provide staff support in palliative care. I'm not sure we always make the time and space for it."
- Byock, I. The Four Things That Matter Most: A Book About Living. New York, NY: Atria Publishing Group; 2014.
- Ankuda CK, Woodrell CD, Meier DE, Morrison RS, Chai E. A beacon for dark times: palliative care support during the coronavirus pandemic [published online ahead of print May 12, 2020]. NEJM Catal. https://catalyst.nejm.org/doi/full/10.1056/CAT.20.0204
- Nakagawa S, Berlin A, Widera E, Periyakoil VJ, Smith AK, Blinderman CD. Pandemic palliative care consultations spanning state and institutional borders [published online ahead of print May 22, 2020]. J Am Geriatr Soc. doi:10.1111/jgs.16643
- Shalev D, Nakagawa S, Stroeh OM. The creation of a psychiatry-palliative care liaison team: utilizing psychiatrists to extend palliative care delivery and access during the COVID-19 crisis [published online ahead of print June 13, 2020]. J Pain Symptom Manage. doi:10.1016/j.jpainsymman.2020.06.009
Larry Beresford is a medical journalist in Oakland, CA, with a strong interest in hospice and palliative care.