Expanded hospice and palliative care training opportunities and increased federal assistance are necessary to weather pandemic-related storms, according to Shoshana Ungerleider, M.D., an internist practicing medicine at Crossover Health in San Francisco and founder of the organization End Well.
The magnitude of the coronavirus pandemic has exposed deficiencies throughout the United States health care system, including the delivery of serious illness and end-of-life care. Many of these providers have struggled to support staff and sustain operations while taking heavy blows from COVID-19.
Ungerleider, who is also executive producer of the Academy Award-nominated end-of-life documentaries Extremis and End Game, recently sat down with Hospice News during a Elevate podcast episode to discuss her experiences as a physician during the COVID-19 pandemic and the lessons learned about end-of-life care during the outbreak.
The pandemic has pummeled the nation’s health care system with overwhelming numbers of seriously ill and dying patients. Much of the federal funding to support struggling providers has gone to hospitals, leaving hospice and palliative care providers among the organizations still reeling from the outbreak.
“Across the country we are just not prepared for what most of us believed was inevitable, given that we understand how quickly and efficiently this virus spreads in communities,” said Ungerleider, who is a Hospice News Changemaker in the Class of 2020. “It’s heartbreaking to see this happen in so much preventable illness and death. It’s just really incredible to think that we’re much worse off than we were months ago. While we see a light at the end of the tunnel in terms of a vaccine as well as therapeutics, we’re going to have a very dark few months ahead of us.”
Enacted March 27, the Coronavirus Aid, Relief and Economic Security Act, or CARES Act, earmarked $175 billion issued to health care providers through the Provider Relief Fund. About $1 billion of these funds was expected to go to hospices, but the proportion remains unknown.
These funds may be temporary fixes to growing gaps across the continuum of care, with hospices among the settings competing for resources to sustain their bottom lines and keep their workforce healthy as the pandemic pummels the United States with another surge. Hospices nationwide have continued to take hits to their revenue streams and operations.
The U.S. Centers for Disease Control and Prevention reported more than 203,000 new COVID-19 cases and 2,760 new deaths in the last week alone. The number of new cases has topped 100,000 each week since November, leading to increased demand for hospice and palliative care, with providers challenged to balance staff scheduling needs.
Even prior to the pandemic, staffing concerns topped the list of worries in 2020 among hospice providers who responded to a Hospice News survey conducted earlier this year. Staff burnout has forced many hospices to reevaluate their policies around paid leave/paid time off (PTO) as employees respond to childcare needs with school closures and remote learning, as well as falling ill to the virus themselves or quarenting after possible exposure.
A number of experts have indicated that palliative care principles, such as goals-of-care conversations, symptom management and interdisciplinary care can guide the clinical response to COVID-19. Limited payment options for palliative care, as well as the relatively small palliative care workforce, can interfere with clinicians’ ability to meet demand during the pandemic. Incorporating these principles into general medical and clinical training could yield significant benefits to patients and families, according to Ungerleider.
“The more that clinicians can have even a baseline foundation [of palliative care] is quite critical with a virus where things can quickly turn very dangerous for people in a matter of hours,” Ungerleider told Hospice News. “We need to be training our frontline clinicians in how to talk to patients about what may occur and have communication skills training — especially when it comes to talking with people about their goals and values in the setting of a serious illness like COVID-19.”
Of course, clinical staff have also suffered the effects of the pandemic, including increased stress, increased risk of infection, life/work balance challenges and further risk of burnout. Research published this summer in the International Journal of Environmental Research and Public Health found that providing resources for self-care facilitation and staffing support for balanced workloads could improve quality of life among interdisciplinary hospice teams and the patients and families they serve
Strategies to further support staff during the pandemic have included employee appreciation efforts to boost morale and providing increased access to mental health services and PTO. Supporting patients dying in isolation and families facing disenfranchised grief has also taken a heavy toll on those providing hospice and palliative care.
Hospices will need to focus on lessons learned during the pandemic to retain and support staff going forward, according to Ungerleider.
“I think there will be a mass exodus of people who leave health care following the pandemic because they face having to be on the front lines,” said Ungerleider. “There is trauma that occurs, and we need to recognize that and support clinicians through this experience. We need much more mental health support for clinicians right now and then beyond even several years out from this experience, as trauma is going to persist. We need our health care administrators of our institutions to be willing to give us the space to process all of this.”