Palliative Care Leadership During the Pandemic: Results from a Recent Survey

In April 2022, CAPC surveyed palliative care program leaders across the country about their experiences leading their teams through the COVID-19 pandemic. Through a survey sent via email, we asked about changes to staffing, patient volumes, and permanent changes to program operations. We asked whether and how palliative care team members have supported their colleagues outside of palliative care. And we asked about the current state of the palliative care team’s emotional wellness.

In this blog post, we cover what one-hundred and fifty of the responding program leaders had to say, and then dig into the findings.

For the 61% of leaders who reported that palliative care consults have either “increased” or “significantly increased” from pre-pandemic levels, only 26% reported that their staffing volumes also increased.

Examples of other permanent operational changes included changes to the team structure (staffing, scheduling, and weekend availability), process (integration with new departments like the ICU), and settings (expansion to new locations).

“Telehealth has expanded dramatically; from a baseline of <5% pre-pandemic, we are currently at 75% of outpatient palliative care visits via telehealth, by patient preference. And clinicians love it too!” - Anonymous palliative care program leader

Sixty-three percent of palliative care team leaders reported increases in the perceived value of palliative care among their leadership, and 72% reported increases in their perceived value among referring clinicians, compared to pre-pandemic.

However, some expressed that their perceived value has increased at the expense of their team’s wellbeing and burnout.

“Having dealt with acute/crisis/death of such severity and quantity -- others now understand what the palliative medicine team does daily and with ease, confidence, and composure.” - Anonymous palliative care program leader

“Palliative care became more valuable and visible. But also burnt out!” - Anonymous palliative care program leader

Palliative care leaders were able to show that their programs improved patient, family, and provider satisfaction, provider feedback, hospice referrals, and symptom management, and they were able to demonstrate that their involvement reduced hospital length of stay, unwanted transfers, ICU admissions, and ICU length of stay.

“We were able to show data that when we were consulted within 72 hours, length of stay and ICU admissions decreased.” - Anonymous palliative care program leader

When asked what leaders have done to help the palliative care team cope during the pandemic, four main themes emerged: case debriefings, team wellness activities like retreats and meditation, encouraging or mandating time off, and social activities and outings. Examples of these team support strategies can be found in CAPC’s podcast, Breaking Point: Leading Through Crisis (Ep 2), No Judgment (Ep 3), Alone, But Not Lonely (Ep 7), and Hearty, Not Resilient (Ep 10).

These activities often took the form of an open-door policy for support and conversations, leading case reviews or debriefings, practicing gratitude through cards and words of acknowledgment, and education and training on core palliative care skills and resiliency. In many instances, the palliative care team’s social work or spiritual care staff were peers’ primary intermediaries for this support.

“I've spent a lot of time debriefing one-on-one with nurses. They have actually asked if I could spend more time with them as part of their wellness.” - Anonymous palliative care program leader

Other common responses included funding or budget constraints, lack of reimbursement for palliative care, and continued misunderstanding of what palliative care is.

“Fear of burnout, actual burnout symptoms, wondering how many years it will take to process the moral stress and injury from the pandemic work.” - Anonymous palliative care program leader

Their pain was palpable in their responses.

“Personally, I have been asking myself, pretty regularly now, can I continue to do this work?“ - Anonymous palliative care program leader

While these 150 responses only represent a subset of palliative care program leaders across the country, the results give us an essential peek behind the curtain.

Over the last two and a half years, palliative care has gained support for being a valuable partner when treating very complex COVID-19 patients, contributing to organization-wide quality initiatives, and assisting non-palliative care colleagues with the emotional burden of the pandemic. However, sustainability is a significant concern due to burnout of the existing workforce, recruitment and retention issues, and managing increased demand for palliative care services. Many palliative care programs cited new recognition within their organizations and among referrers, but without additional resources to meet the rising needs of patients, families, and the institutions where they provide care.

It is difficult not to feel discouraged by the short- and middle-term outlook in palliative care, and in health care more broadly, when so many problems are not within our capacity to solve.

Burnout among palliative care professionals that responded to our survey is consistent with systemic issues facing our nation’s health care providers. The health care ‘treadmill’ that causes suffering for both patients and health professionals existed long before the pandemic. Moral distress over rampant inequities and gaping gaps in care for patients with serious illness existed before we knew the term “COVID-19.” These systemic issues require policy, societal, cultural, structural, and organizational solutions and cannot be solved by palliative care teams alone.

And yet, the first twenty years of our field’s history is a story of the rapid, unlikely growth of a new medical specialty. Visionary palliative care champions, clinicians, philanthropists, researchers, and health system leaders contributed to the birth of a field that now cares for patients in 90% of the nation’s hospitals and a growing number of community settings. They did this work because they could envision a better approach to care for vulnerable patients. And now this vision is shared by an ever-larger number of people—both inside and outside of palliative care—due to our field’s leadership and advocacy.

As a field, we are tired, and too often under-recognized and under-resourced. We know we need to devote energy to our own well-being, but at the same time, we are busier than ever. But, when we zoom out to look at where we’ve come from as a field, the progress becomes easier to see. Palliative care illustrates what truly person-centered care looks like, and that’s never been more evident or more urgent than during a pandemic that dehumanized patients and health professionals alike.

CAPC aims to provide all the support possible to help palliative care professionals cope as the pandemic continues, and to get through today, next week, and the years ahead (see below).

For palliative care team leaders and providers who are concerned about meeting demands at the expense of team health, here are some resources that may help:

• Meeting the Demand
  • Scaling Home-Based Palliative Care to Better Serve the Seriously Ill Populations, a blog post
  • Managing Expectations in Uncertainty, an on-demand webinar
  • 5 Tips for Palliative Care Teams on Managing Growth, a blog post
  • Maximizing Palliative Care Program Efficiency, a toolkit
• Team Health
  • Strategies for Maximizing the Health/Wellness of Palliative Care Teams, a monograph
  • Providing Emotional PPE to Your Loved Ones Working in Healthcare, a fast five
  • Improving Team Effectiveness: Team Health and Resilience, an on-demand webinar
  • Team Health and Resilience, a quick tip

CAPC is dedicated to supporting palliative care teams and leaders through the pandemic and beyond. This includes offering the below COVID-19-specific resources for palliative care team leaders, staff, and others caring for patients with serious illness.

• COVID-19-Specific Resources
  • Breaking Point: Debriefing to Address the Challenges of Our Work, a Virtual Office Hours series that is confidential and open to all
  • COVID-19 Rapid Response Resources Hub, a collection of tools, technical assistance, clinical training, and convening opportunities
  • Breaking Point Podcast Series, a podcast series where health care workers from across the country share powerful and eye-opening stories from the front lines of the COVID-19 pandemic

We want to thank the palliative care program leaders who participated in this survey for their honesty, openness, and time. Your responses have been vital to our work. If you are a palliative care program leader that would like to be included in future surveys, please contact [email protected]. You do not need to be a CAPC member to participate.