Perceptions of Palliative Care Program Viability During the Pandemic: Qualitative Results From a National Survey

Abstract

Background: Palliative care programs have played a significant role during the COVID-19 pandemic. However, the financial impact of the pandemic and operational challenges for palliative care programs have raised concerns for their future viability. Objectives: To explore palliative care program leaders’ perceptions of the future viability of their programs in the context of the pandemic and inform future educational and program development. Methods: Surveys were sent to 1430 specialist palliative care program leaders, identified through the Center to Advance Palliative Care’s contact lists, via email in May 2020 and January 2021. Leaders were asked why they were or were not concerned about the viability of their palliative care programs. Qualitative content analysis was applied to determine themes. Results: We received 440 responses. Most programs served hospital settings and were geographically located across all US regions. We identified four themes: 1) The importance of being valued by organizational leadership and peers, 2) The importance of adequate and supported palliative care staff, 3) The pandemic validated and accelerated the need for palliative care, and 4) The pandemic perpetuated organizational financial concerns. Conclusion: Findings provide insights about palliative care program viability from the perspective of program leaders during a global pandemic. Technical assistance to support palliative care teams and their relationships with stakeholders, methods to measure the impact of peer support, efforts to educate administrators about the value of palliative care, and efforts to reduce burnout are needed to sustain palliative care programs into the future.

Introduction

During the pandemic, US palliative care teams have provided direct care to patients with COVID-19, support for caregivers and families, and guidance to other clinicians in communication skills, symptom management, and coping with loss.^1-4 During the pandemic surges, the influx of critically ill patients with COVID-19 created a significant demand for palliative care services, which were temporarily addressed.,^5-7 However, it is difficult to envision how even well-supported palliative care programs can remain viable with a continuous demand for services.⁸

The COVID-19 pandemic has resulted in revenue loss for United States hospitals and health systems totaling more than $300 billion, leaving nearly half of hospitals with negative operating margins at the end of 2020 and continued strains on hospital and health system capacity into 2021 and 2022.⁹ Historically, numerous challenges for palliative care teams have been documented, including limited funding, palliative care program closures, a workforce shortage, and provider burnout.^10-14 Given the pandemic’s financial strain on the US healthcare system and the challenges documented for palliative care teams before the pandemic, there are concerns for the future stability of the field of palliative care.

The Center to Advance Palliative Care (CAPC) is a national organization dedicated to increasing the availability of quality healthcare for people with serious illness. CAPC provides healthcare professionals and organizations with the training, tools, and technical assistance necessary to meet the needs of patients with serious illness and their families. In response to providers’ needs during the pandemic, CAPC launched a series of supports, including crisis symptom management protocols, a COVID-19 response toolkit, and confidential telephonic group debriefing sessions.¹⁵ In addition, to understand the concerns of US palliative care programs, especially around future viability, and to inform educational and program development, CAPC leadership developed and distributed two surveys to palliative care program leaders across the country.

This article describes the qualitative findings of CAPC’s surveys exploring palliative care leaders’ perceptions regarding the future viability of their programs in the context of the COVID-19 pandemic. These data provide insights into the challenges during the first year of the pandemic and inform efforts to support and strengthen palliative care programs through the evolving pandemic and beyond.

Methods

Data Collection

CAPC distributed two online surveys (“Field Surveys”) to palliative care program leaders across the United States via email.^16,17 The email distribution list contained 1430 individuals identified as the primary contact for the palliative care program, including professional titles such as manager, clinical lead, and department chief.

Of the 1430 program leaders, 55.7% (797/1430) belonged to CAPC member organizations, and the remaining were participants from two of CAPC’s national projects: National Palliative Care Registry™ and Mapping Community Palliative Care.^18,19 The first survey was distributed in May 2020, and the second was distributed in January 2021. For each distribution, two reminder emails were sent to non-responders, and the survey remained open for six weeks.

The surveys were developed through an adaptive process, reflecting changing COVID circumstances. Survey content encompassed the following areas: service changes, consult and staffing volumes, program viability, and coping and burnout. However, this analysis focuses specifically on one of the required questions in the Field Surveys related to program viability. The question, “Please explain why you are or why you are not concerned about the viability of your palliative care program post-COVID-19,” was open-ended. The responses ranged from a few words to a paragraph.

This study constitutes a quality improvement initiative and does not meet the definition of human subjects research. It is, therefore, not required to undergo IRB review.

Data Analysis

We used a qualitative approach, content analysis, to direct our synthesis of themes from the open-ended responses.²⁰ For the first survey, two authors (MR and EF) developed a list of a priori codes based on input from palliative care experts and existing literature. The two authors then independently reviewed the same sample of 20 randomly-selected responses to identify both a priori and emergent codes, refining the codes and developing an initial codebook. Four coders then applied the codebook to all remaining responses with two coders coding each response. The group met to discuss concordance and discordance between coders, reach consensus, refine the codebook and re-apply codes as necessary.

For the second survey, two coders (MR and RH) applied the initial codebook to a random sample of 20 responses. As no new codes emerged and we had concordance with the first survey responses, the remaining responses were randomly split between our four coders for review. Although no specific new codes emerged at this stage, any coding questions were flagged for team review. As no new codes emerged between the two surveys, we conducted a pooled analysis combining all responses from both time points.

The team then used these codes to synthesize thematic statements. We kept detailed analytic memos and meeting minutes as an audit trail throughout this iterative process and utilized expert review from palliative care specialists outside the project team to ensure our findings’ integrity.^21,22

Results

We received 440 survey responses from palliative care program leaders across the two surveys, including 244 responses to the May 2020 survey (response rate of 17%) and 196 responses to the January 2021 survey (response rate of 14%). Forty program leaders submitted a response to both surveys.

Characteristics of the respondents’ palliative care programs are presented in Table 1. For both surveys, most programs were administered by hospitals, and more than three-quarters served in hospital settings. However, most programs provided care in more than one setting. Responses represented programs geographically located across all US regions.

Table 1.

Responding Palliative Care Program Characteristics.

Characteristic	May 2020 N = 244		January 2021 N = 196
	n	%	n	%
Administering organization type
Hospital	151	61.9	87	44.4
Hospice	42	17.2	37	18.9
Health system	20	8.2	31	15.8
Physician group, office practice, or clinic	18	7.4	23	11.7
Long-term care facility	2	0.8	2	1.0
Home health agency	8	3.3	12	6.1
Other	3	1.2	4	2.0
Palliative care setting
Hospital	201	82.4	150	76.5
Patient’s home	117	48.0	118	60.2
Office practice or clinic	121	49.6	98	50.0
Long-term care facility	64	26.2	86	43.9
Assisted living facility or domiciliary	62	25.4	93	47.4
Other	1	0.4	0	0.0
Provided care in more than one setting	157	64.3	142	72.4
Region
Midwest	69	28.3	42	21.4
Northeast	51	20.9	41	20.9
South	73	29.9	65	33.2
West	51	20.9	48	24.5

Using the final codebook, we identified core themes contributing to perception of viability and areas of need for palliative care teams:

• (1) The importance of being valued by organizational leadership and peers

• (2) The importance of adequate and supported palliative care staff

• (3) The pandemic validated and accelerated the need for palliative care

• (4) The pandemic perpetuated organizational financial concerns

The themes are further described below, with supporting statements drawn verbatim from the responses and presented in quotations.

The Importance of Being Valued by Organizational Leadership and Peers

Respondents stressed the importance of strong leadership buy-in and recognition of palliative care’s service alignment with the organization’s overarching mission and standard of care. One program leader stated, “We remain an essential part of the health system’s strategy for providing the best possible care for our patients.” (ID211) Respondents emphasized that palliative care is seen by leadership as “part of [the organization’s] over all strategy” (ID108) and “integral to the mission of the [organization]” (ID147). Other program leaders noted that their programs were built on a strong foundation and were well-established before the pandemic. One program leader reported, “We have a mature, 15-year old program that is well respected throughout the hospital.” (ID251)

Similarly, palliative care leaders expressed that their peers highly value them. One leader reported, “We have an established rapport [with] our referral sources and administration, have proven our worth, and consistently support and provide relief to patients, families, and staff.” (ID422) Another highlighted its expanded role to support colleagues: “We are working with colleagues to help prevent burnout, provide open forums for provider discussions and concerns. We are keeping our workforce healthy and viable.” (ID286)

Concerns around viability arose when leaders indicated that palliative care was not a top priority for their organizations and was considered a non-essential service. One program reported, “If any program is going to get chopped - it would be [palliative care].” (ID082) Another noted, “we are value added but nonessential in their eyes.” (ID189) A third stated, “[Palliative care] is frequently seen as an optional service.” (ID088) To further compound this perspective, palliative care leaders continued battling misconceptions about their services. One program reported, “the medical community oftentimes does not understand how a patient can benefit from palliative care.” (ID307) Another reported, “There is still big confusion on the services provided by the palliative care program.” (ID301)

The Importance of Adequate and Supported Palliative Care Staff

Palliative care program leaders were very concerned about adequate staffing, the toll the pandemic has taken on mental health, and the risk of burnout as elements that may challenge the viability of their programs. Leaders reported, “our palliative care bandwidth is stretched over capacity” (ID283), “we can make it work with more resources long term but not at current staffing” (ID270), and “I am more concerned about staff well-being, retention, and capacity to provide care to all patients in need.” (ID377) One leader expanded on this concept, “Even if we do survive from here on, we needed more resources before all of this happened, and the chances of us getting those are diminished. I also worry that our current team members are at the edge of burning out.” (ID094)

In some instances, respondents expressed concerns about how their program’s viability rests heavily or entirely on them as the program’s leader. One leader reported, “I am the only member of the palliative care team at the hospital and I have resigned under the strain of the program. Currently, there are no plans to open the position and replace me.” (ID411) A second leader said, “I am personally feeling burned out, and as the main provider of palliative care in this small rural hospital with a loss of other staff and uncertainty about future staff, our sustainability is directly tied to my capacity.” (ID281)

The Pandemic Validated and Accelerated the Need for Palliative Care

Some leaders reported that the pandemic validated and accelerated the need for palliative care in their institutions and communities, which may impact their program’s future viability. Respondents used key phrases such as “valued,” “appreciated,” and “visible” in their responses and reported that palliative care has “shown our worth ten times over.” (ID283) One program leader reported, “The value of specialty level palliative care has become undeniably clear in the wake of a global pandemic. Our expertise, skill, and services have been invaluable to our hospital system and our community.” (ID435) A second leader reported,

“Our Palliative Care program has excelled in providing excellent care and response to the expanded needs to support patients and families during the COVID-19 pandemic both in the Community Based Palliative Care setting and the Inpatient setting. It has translated to a better appreciate of the abilities of the Palliative Care team to assist in care with our referring partners and served to increase our consults beyond the needs of COVID related patient concerns.” (ID418)

A third respondent highlighted the increase in patient volume and how it affected their program’s value to the organization, writing, “our program has increased both in census and in how valuable the system sees us. We have more system support and recognition than ever at this time.” (ID 230) Similarly, leaders also indicated that the availability and expansion of benefits for telehealth was positive for their programs during the pandemic, with one reporting, “We are busier than ever and increased reimbursement for telehealth opens up additional options for ongoing care.” (ID221)

The Pandemic Perpetuated Organizational Financial Concerns

Palliative care leaders reported that the pandemic’s financial impact on their administering organization heightened concerns for their future viability. One said, “[COVID] is costing our system a fortune and we were already strained financially. I worry the cost of our program may be a target.” (ID027) A second reported, “With the cost our organization as a whole has encountered, some programs may need to be cut or downsized.” (ID046). Organizational financial concerns also negatively impacted the possibilities of palliative care program expansion. One respondent wrote, “If I had any worry, it would be that expansion/hiring is frozen ALL OVER the medical center because of financial concerns, and this will certainly impact our ability to expand our program.” (ID354) A second further clarified, “The organization has less financial capacity and previous agreements about palliative care expansion have been put on hold, possibly permanently.” (ID281)

Similarly, program leaders reported concern that palliative care doesn’t generate revenue, despite providing cost savings for their institutions. This puts palliative care at unique risk during financial instability for the organization. Some respondents reported that palliative care was not seen as a “money-maker.” One program stated, “Our healthcare system is running at 50% its normal revenue. You can’t cost save to profitability. Palliative care is an easy target for budget cuts in hard times.” (ID239) A second program reported, “With the negative financial impact of COVID, there will be intense scrutiny of the need for the health system to support non-revenue generating practices.” (ID159) However, some leaders reported that their organizations were able to see their value beyond generating revenue, “We have strong senior leadership support for the program, and they understand the bigger picture of Palliative Care as an investment in the best care rather than a revenue generator.” (ID229)

Discussion

Amid a global pandemic in which the US healthcare system is financially and operationally strained, CAPC’s Field Surveys highlight palliative care program leaders’ perceptions of the viability of their programs and opportunities to support these teams.

First and foremost, relationships with the C-Suite and organizational leadership were reported as necessary to program viability. Some cited strong support before the pandemic that endured or strengthened through the crisis. The minority of leaders concerned about their future reported that palliative care was not seen as a “standard of care” at their institutions and cited misunderstandings about the benefits of palliative care. These findings speak to the ongoing need for palliative care leaders to have access to resources and technical assistance that support building these relationships, achieve mission alignment with their parent organizations, and continue to demonstrate the case for palliative care.^23,24

In addition to organizational leadership, respondents reported the importance of relationships with referring clinicians. As reported by many respondents, an increase in consult volumes points to referring clinicians’ increased reliance on and demand for the work of palliative care teams. It may be an essential factor for palliative care program viability in the short-term future. For these teams, strategies to rapidly expand availability in times of significant demand are vital.²⁵ Respondents also recognized the ability of palliative care teams to meet the quadruple aim: improving the work life of healthcare providers, including clinicians and staff.²⁶ Methods are needed to measure and quantify the impact of the peer support provided by palliative care teams. Additional evidence may help palliative care leaders secure resources and sufficient staffing levels.

Respondents spoke to both the pandemic’s financial strain on parent organizations and the cost savings enabled by the program. Even though hospitals realize significant cost savings from inpatient palliative care, respondents noted that cost savings might not be as salient to leadership as revenue generation.^27,28 Efforts to educate healthcare administrators about the value of, and business case for, palliative care may help to improve organizational finance leaders’ views on the role of palliative care teams in enhancing quality and avoiding unnecessary costs.²⁹

Finally, as is true across the US healthcare workforce, respondents were concerned about staff burnout and team depletion, regardless of how confident they were about their program’s viability.³⁰ In the context of a palliative care workforce shortage that predates the pandemic, rising demands for palliative care services threaten the sustainability of palliative care teams and the quality of palliative care services.¹³ Before the pandemic, 39% of palliative care providers reported burnout, mostly from emotional exhaustion.³¹ Policymakers, health systems, and organizational leaders must prioritize efforts to reduce burnout and expand the workforce.³² There is evidence that teaching coping strategies and providing coworker and supervisor support may reduce perceptions of burnout for palliative care teams.³³

Importantly, these survey findings allowed CAPC to respond quickly to concerns from the field. CAPC created a toolkit to support three core domains of palliative care leadership in the time of COVID-19³⁴:

• (1) Understanding the external environment and its impact on healthcare organizations

• (2) Engaging program stakeholders and aligning program services with stakeholder priorities

• (3) Management practices to ensure efficient use of program resources and high-quality care delivery during instability

As most respondents had concerns for their emotional well-being and that of their teams, CAPC developed confidential well-being debriefings facilitated by trained moderators and disseminated debriefing facilitator training materials so that palliative care professionals could host sessions with colleagues at their organizations. Timely surveying of the palliative care field enables real-time support from national palliative care organizations. It will continue to be a valuable strategy to ensure responsive support, information, and guidance during the pandemic and beyond.

Limitations

The 440 responses secured from palliative care leaders amid a global pandemic provide a rich source of information and real-time insight into palliative care leaders’ perceptions during a uniquely challenging time. However, this project had limitations. The survey was only distributed to CAPC contacts and is thus not generalizable to the perspectives of all palliative care program leaders or front-line palliative care staff. The survey was disseminated during a global pandemic, and the target audience was at the leading edge of the pandemic’s response, which may have impacted who responded and when. In addition to response bias, we could not compare the characteristics of responders to non-responders due to limited data. Nonetheless, the responses included programs that varied in setting and geographic location. The utilization of two surveys allowed us to incorporate the responses of more palliative care leaders as the pandemic evolved. Furthermore, the results from the study are descriptive and not intended to reflect association or causation. Open-ended questions enabled a qualitative analysis of program leadership’s key insights and concerns, and “viability” was open to interpretation by the respondent.

Conclusion

CAPC’s Field Surveys provide insights into factors related to palliative care program viability from the perspective of program leaders during a global pandemic. Resources and technical assistance designed to empower and support palliative care program leaders are necessary to sustain and strengthen programs, including organizational relationship-building, rejuvenation of the value case to reinforce the impact of specialty palliative care services on patients, families, referring clinicians, and healthcare organizations, and attention to critical workforce investments.

ORCID iDs

Maggie Rogers https://orcid.org/0000-0002-0049-2987

Julia L. Frydman https://orcid.org/0000-0002-0021-7627

Emily Franzosa https://orcid.org/0000-0002-7590-0316