key: cord-0759693-pq9cdo1g
authors: Tong, Wendy; Kapur, Supriya; Fleet, Alexa; Russo, Samantha; Khedagi, Apurva; Blinderman, Craig D.; Nakagawa, Shunichi
title: Perspectives of Remote Volunteer Palliative Care Consultants during COVID: A Qualitative Study
date: 2021-08-04
journal: J Pain Symptom Manage
DOI: 10.1016/j.jpainsymman.2021.07.028
sha: 20653673ff7f4a0758daf8585a55be9de506a0ca
doc_id: 759693
cord_uid: pq9cdo1g

CONTEXT: A novel remote volunteer program was implemented in response to the initial COVID-19 surge in New York City, allowing out-of-state palliative care specialists to serve patients and families in need. No study has detailed the perceptions of these consultants. OBJECTIVES: To understand the experiences of remote volunteer palliative care consultants during the initial COVID-19 surge. METHODS: This qualitative study utilized a thematic analysis approach. During January and February 2021, we conducted one-on-one semi-structured interviews with 15 board-certified palliative care physicians who participated in the program. Codes and emerging themes were identified through iterative discussion and comparison. RESULTS: Five overarching themes (with sub-themes in parentheses) were identified: 1) motivations for participating in the program, 2) logistical evaluation of the program (integration, telehealth model, dyad structure and debriefing sessions), 3) barriers to delivery (language and cultural differences, culture of high-intensity care, legal and administrative differences), 4) emotional burden (moral distress, burnout), and 5) ideas for improvements. Notably, participants observed institutional and cultural differences that posed challenges to delivery of care. Many expressed feelings of distress related to the uncertainty and scarcity caused by the pandemic, although volunteering may have been protective against burnout. CONCLUSION: This study provides an in-depth look at the experiences of remote volunteer palliative care consultants during the initial COVID-19 surge from the unique perspectives of the consultants themselves. Participants expressed overall positive and meaningful experiences and felt that the model was appropriate given the circumstances. Additionally, participants provided recommendations that could guide future implementations of similar programs.

The COVID-19 pandemic fundamentally altered the ways in which many fields of medicine deliver care, bringing about a number of changes to workflow born from the greater need for healthcare resources and safety precautions to limit the spread of COVID-19. 1-10 New York City experienced the first major United States COVID-19 surge during the spring of 2020. 11 The surge required New York City's largest hospital, Columbia University Irving Medical Center (CUIMC)/NewYork-Presbyterian (NYP), to rapidly adapt in order to meet the needs of their patient population. 12, 13 The Adult Palliative Care Service at CUIMC/NYP saw an unprecedented seven-fold increase in requests for consultations, outpacing the team's ability to provide care in a time-sensitive manner. 12 As part of the hospital's response, a novel remote Palliative Care Virtual Consultation Program was rapidly designed and implemented, providing specialty-level palliative care for 34 patients at CUIMC/NYP over a period of two months (April 13-June 14, 2020). 14 Physician participants were recruited through social networks (email and Twitter) with the final program roster consisting of 18 volunteer palliative care specialists from University of California, San Francisco (15) , Stanford University (2) , and Dartmouth-Hitchcock (1) . Participants were consulted in high-complexity COVID-19 cases that were selected by the home institution's palliative care clinicians. These cases consisted of patients who were intubated and sedated or otherwise unable to participate in conversation, and thus the purpose of the consult was to help clarify goals of care and support family members who were not allowed to visit the hospital due to COVID-19 restrictions. Demographics, clinical information, and outcomes of this patient cohort are described in this retrospective case series. 15 Qualitative studies have previously investigated patient and provider perspectives on the abrupt shift from in-person practices to telemedicine. [16] [17] [18] [19] Detailed accounts of the implementation of single-institution and inter-institution volunteer-based remote palliative care services during the COVID-19 pandemic have been documented. 4, 19 However, no study has performed an in-depth exploration of the perspectives and experiences of palliative care specialists providing care remotely in the setting of a global pandemic. The aim of this study was to use rigorous qualitative methods to evaluate the experiences of these physicians, examining themes such as motivation for participation, emotional toll, and lessons learned. These findings provide an instructive lens for understanding the role of virtual palliative care in emergent contexts, as well as for informing future efforts to extend remote palliative care services during times of crisis.

This qualitative study utilized a thematic analysis approach. Fifteen out of 18 physicians who participated in the Palliative Care Virtual Consultation Program agreed to be interviewed for this study. Informed consent was obtained prior to the interview; research procedures were reviewed and approved by the New York State Psychiatric Institute's IRB.

Three trained qualitative researchers conducted and recorded semi-structured interviews over Zoom during January and February of 2021, consisting of one pilot key informant interview and 14 subject interviews. A semi-structured interview format was chosen to allow for spontaneity and flexibility in providing participants the opportunity to reflect on their experiences and fully explore naturally arising themes. The pilot interview was transcribed both manually and using OtterAI with comparable accuracy; OtterAI was utilized thereafter with a manual inspection to confirm accuracy. 20, 21 During the interviews, participants were encouraged to think out loud while reflecting, and interviewers conducted member checks with participants to improve accuracy and validity. Concurrent note-taking was performed by a second member of the interview team. After each interview, the interviewer and note-taker discussed and recorded their initial impressions of the distinctive themes (active memoing).

The interview guide was developed in collaboration with the creators of the volunteer program and a qualitative expert consultant. The guide consisted of open-ended questions about the decision to volunteer, experiences while volunteering, observed institutional differences, and suggestions for improvement. The questions were pilot tested during the key informant interview to determine face and content validity. As interviews progressed, the guide was refined to include emerging themes to ensure that crucial aspects of the program were fully addressed, with a final open-ended question designed to capture any ideas that had not already been discussed.

All interview transcripts were de-identified and coded using an inductive and iterative process in accordance with the prescribed conventions of thematic analysis. 22 Five researchers closely read the transcript of the key informant interview to identify initial comments of interest, a practice known as open coding. These comments were identified through one of two ways: 1) they pertained to themes outlined by the principal investigators and drawn from existing literature; and/or 2) they emerged in the interviews as important to the participants. The pilot interview was coded independently by three different researchers to generate a preliminary codebook. Researchers met regularly to discuss themes and reach consensus on codes with referral back to the original transcripts for validation. Investigator and data triangulation were employed to promote validity, as codes were iteratively discussed amongst all investigators and responses from multiple clinicians were examined to obtain a variety of perspectives and identify convergent themes. The resulting set of codes was synthesized with iterative refinement and finalized through consensus with early transcripts checked and re-coded where necessary (focused coding). The final theoretical model was created by the multidisciplinary research team through iterative discussion of final emergent themes in the codebook.

A total of 15 palliative care physicians (67% female) from three U.S. academic medical centers participated in one 30-minute to 1-hour interview over Zoom. The participants ranged 15 Participant information and demographics can be found in Table 1 .

Five overarching themes (with sub-themes in parentheses) were identified: 1) motivations for participating in the program, 2) logistical evaluation of the program (integration, telehealth model, dyad structure and debriefing sessions), 3) barriers to delivery (language and cultural differences, culture of high-intensity care, legal and administrative differences), 4) emotional burden (moral distress, burnout), and 5) ideas for improvements. Table 2 provides representative quotes that illustrate each theme/subtheme.

Participants expressed a strong desire to help those who were greatly impacted by the emerging pandemic, especially given that their home hospitals were not experiencing a similar surge at that time: -In San Francisco, we barely had a COVID case in the hospital, like it was unrecognizable, compared to what we were experiencing via telehealth in New York.‖ In addition to providing support for patients and loved ones, many participants emphasized their desire to alleviate the burden of providers at the host institution.

Participants described varying mechanisms of initial discomfort, including anxiety over not being able to deliver satisfactory care and unease while adjusting to delivering virtual care during a public health emergency. Many felt that their involvement was only a small contribution Due to the chaotic conditions of the surge, the unique role of the virtual consultants had not been fully communicated to all relevant members of on-the-ground staff. Participants expressed difficulties in coordinating with on-the-ground team members to establish a day-today workflow. One participant stated: -It took a little learning to figure out, ‗Okay, who is on the ground already seeing the patient? And what is our role here? And does the on-the-ground ICU team know that we're here doing what we're doing?'‖

Participants praised the telehealth model for its convenience and flexibility. Use of telehealth allowed multiple geographically dispersed loved ones to join family meetings, facilitating inclusive and comprehensive conversations about goals of care. Additionally, because most participants were in a time zone three hours behind that of the host institution, they could support families -after hours.‖ Despite these advantages, telehealth complicated efforts to build rapport with loved ones.

Some participants reported that absence of physical touch and nonverbal cues compelled them to rely more on tools such as silence and supportive language. In addition, the circumstances did not allow for staff at the host institution to easily coordinate video calls in patient rooms: -Trying to find someone on the floor who actually had the bandwidth to hold up an iPad... 9 times out of 

The volunteer program utilized a dyad model in which 1-2 remote consultants worked as a team; each team followed 1-3 cases longitudinally. 14 While palliative care is already largely an interdisciplinary and collaborative specialty, this program employed a less common dynamic in which two attending-level participants worked together in a dyad.

Most participants shared that the dyad system was helpful not only in coordinating family meetings and distributing the workload, but also in -shar[ing] the burden‖ and emotional toll of difficult conversations. Participant pairs would often hold debriefing sessions after a family meeting: -It was a very protective practice that we put in place where we were able to think, ‗Was that the right thing?' Sort of giving each other feedback about how the conversation went.‖ Some participants also met intermittently in larger groups to troubleshoot logistical issues, share advice, and provide emotional support for each other. Overall, most participants enjoyed and valued practicing palliative care within a dyad structure.

Due to the host institution's large Dominican, Spanish-speaking patient population (64.7% Hispanic; 64.7% Spanish as primary language), participants often used third-party phone (76%) or videoconference (24%) interpreters during their consultations. 15 Of note, it was common for providers at the host institution to use third-party phone interpreters even prior to the start of the COVID-19 pandemic.

Several participants remarked that differences in language and cultural backgrounds added additional layers of complexity to discussions about goals of care: -Communication is always harder when there's a translator [interpreter], because nuances in the language that you use get lost.‖ Despite these barriers, participants felt that they were still able to effectively provide support and care.

Participants perceived palliative care to be less prioritized at the host institution than at their home institutions. Some attributed this to a difference between -East Coast‖ and -West Coast‖ culture; others thought that this difference may be a byproduct of the singularity of the surge rather than a reflection of true differences in institutional culture. One participant described observing a -full court press‖ mindset in many of the host institution ICU providers: -It definitely felt like there was more of an attitude of, ‗You can't not offer a potential life-sustaining treatment' to patients… who were effectively already dead.‖ Another stated that the -culture of high-intensity care‖ sometimes made it difficult to manage expectations when conducting goals of care conversations with patients' loved ones:

-I noticed [renal replacement therapy] being widely used in patients whose prognosis was objectively terrible. And I found myself thinking, ‗Why are we offering this to so many patients?

And why don't we talk to patients and their loved ones about the fact that we don't recommend this?'‖ Despite these differences, participants generally felt that the host institution palliative care physicians and the participants themselves were -cut from the same cloth,‖ noting -a lot of synergy‖ in their approaches.

Participants expressed bewilderment at the stark differences in laws about medical decision-making between New York State (host institution) and their home states of California and New Hampshire. Many recounted cases at the host institution that required jumping through -far more legalistic hoops‖ than they were accustomed to, such as requiring administrator approval to withdraw patients from life-sustaining treatments and requiring two physicians (one attending and one PGY2 or above) to approve Do-Not-Resuscitate and/or Do-Not-Intubate orders -the latter of which is -something that interns do at my [participant's] hospital all the time.‖ One participant acknowledged that although these more stringent rules could be considered -protections in place for patients,‖ they also recognized -the flip side is that it makes it harder to transition somebody to a less… life-prolonging aggressive curative pathway.‖

Participants cited causes of moral distress that revolved primarily around the uncertainty and widespread tragedy caused by COVID-19. During the initial phase when so little was known about COVID-19, participants found themselves in uncharted terrain: -All of a sudden [it] felt like my ability to help patients, and to help family members understand what might happen with their loved one, was taken away.‖ Some remarked that talking to loved ones -every single day… who had family members who are dying from COVID‖ made them -more angry at the lack of masking‖ among the general public. One participant emphasized that the resource scarcity caused by the pandemic created a situation that contradicts a basic tenet of palliative medicine: -There were patients that were just completely swamping like a bazillion ICU beds, and there was a need to actually try to manage that in some way… And so it turned palliative care from just trying to engage with the family to something where there was really an agenda for public health reasons, which is in conflict with what palliative care is.‖

Participation in the program not only created additional time commitments, but also harbored the potential for causing burnout, a common emotion in the practice of palliative medicine that can be further evoked by the challenges of responding to a public health emergency. Most participants described experiencing feelings adjacent to burnout but stopped short of calling it as such. These feelings ranged from occasional stress from the added workload to frustration with the growing pandemic and public response. Some described difficulties with drawing appropriate boundaries between their existing obligations and their desire to help within the program. Moreover, there was a common feeling of -not being in the thick of it,‖ as participants recognized that their workload and emotional burden were much less than those of their CUIMC/NYP colleagues. Conversely, some mused that their contributions during a time of crisis may have helped to ward off feelings of exhaustion and grief: -It was almost healing for me to have that personal connection, and also to feel like I'm making a little bit of difference.‖

Participants relayed specific suggestions for improvement for a future iteration of the program. Most also prefaced such statements with caution, understanding that these improvements were not expected during the unprecedented and rapidly evolving nature of the surge. Many participants expressed a need for -more structure‖ within the program, specifically for further -specification on [their] role in the [host] hospital.‖ Moreover, a few participants expressed concern over the markedly unequal distribution of palliative care resources in the United States and had varied opinions regarding if similar volunteer programs would serve to improve the landscape. One participant took issue with the -culture of volunteering‖ in a medical setting, noting that volunteerism may not be the most equitable way to -match services with the need.‖ Overall, participants felt that the volunteer model was -a prototype that could be utilized more broadly‖ to bring palliative care to areas in need.

Our findings describe important motivational and logistical aspects of a unique remote volunteer palliative care consultation program and highlight specific areas for improvement in future iterations. Overall, participants felt that they were able to effectively provide care through the program, even when performed in emergency circumstances and across state-lines.

Previous literature shows that frontline workers experienced strong feelings of distress and burnout during the COVID-19 pandemic. 18 Palliative care physicians are also known to have particularly high burnout rates. 23 Notably, participants expressed that volunteering remotely during the crisis offered protection against feelings of burnout, although they still endorsed some emotions of helplessness or moral distress. Participants primarily described experiencing distress from an inability to prognosticate and guide family members due to the uncertainty of the pandemic, as well as from witnessing the plight of colleagues on the ground, suggesting that providers feel an ethical obligation to help fellow healthcare workers during a time of need. 24 Of note, much of the participants' moral distress stemmed from the conflict between the conditions of scarcity created by the pandemic and a core tenet of palliative medicine, which is to engage openly and honestly with patients and family without an agenda. However, the meaning and fulfillment derived from the ability to help patients, patients' loved ones, and colleagues ultimately seemed to outweigh their emotional burden. Participants also recalled experiencing surprising, and at times unsettling, differences between their home institutions and the host institution with regards to hospital workflow, institutional culture, and laws around end-of-life decision-making that posed challenges to delivery of care, highlighting the importance of addressing institutional differences as part of the onboarding process.

Participants described specific improvements for future emergency response palliative care volunteer programs. Many stated the need for increased awareness of the volunteer role and more day-to-day integration into on-the-ground teams within the host institution, as well as greater clarity regarding differing institutional practices. Comments regarding equity and availability of palliative care resources were grounded in existing larger-scale calls for palliative care to become more accessible. 25, 26 These findings provide novel insights into the experiences of the physician participants themselves. The greater importance of this study is evident through the increasing call for palliative care services via telemedicine in the pandemic's wake, as well as for greater interinstitutional and cross-state collaboration and volunteerism. 10, 15, 27 While programs like the one described in this study can be utilized more regularly in order to match available palliative care physicians with specific hospitals or regions that have an increased need for palliative care services, close attention must be paid to improving coordination with on-the-ground staff, clarifying differences in institutional practices and culture, and providing emotional support resources. Lessons learned through this study provide important groundwork for future considerations when designing and implementing similar programs.

There are several limitations to this study. As qualitative analysis, the research descriptively reports the perceptions of our participants; thus, we are unable to make causal claims. Our sample size was small, and participants were not chosen randomly; we purposely limited our analysis to the palliative care physicians who participated in CUIMC/NYP's remote volunteer program during the initial surge to elucidate the motivators and experiences of this unique population. Our results represent participant opinions 6-8 months after the program ended rather than during the program itself, introducing possible recall bias, though the uniqueness of the experience may have mitigated this bias. Of note, three physicians declined to participate; their perceptions may differ and are not reflected in this study. In addition, we did not interview non-palliative care physicians, who may have had different experiences during the surge. Despite these limitations, we believe that the themes that emerged from our findings can inform the implementation of future remote volunteer programs that cross state and institutional borders. the residents and students really stepped up to try to do that kind of volunteer work, so they would be the one that would coordinate with us to bring an iPad or something like that into the room and hold it up for the patient. And that was really helpful and hard to coordinate. So like I said, it was mostly the coordinating that became difficult.‖ actually be… a prototype that could be utilized more broadly.‖ "This whole endeavor was like a great demonstration that we may not be able to provide perfect textbook-level team-based palliative care in the middle of a crisis, but we can do something which will be of service… that makes a good argument for trying to create some sort of a resource that can go to areas of need in future crises… with some infrastructure it can be done and can add value, and you can be really far away and still really impact people's lives. And so I think it just really highlighted this additional way to magnify the impact of palliative care."

-As physicians, we really need to, it might not be as popular to say this, but I think we really need to think about the culture of volunteering, and is that actually solving the root cause of some of these problems and workforce and burnout and unmet institutional needs? Are volunteers the right way to solve the problem? It might be in the short-term, but I think in the long-term, we need to think about how we can recruit more physicians into the field. How 

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The authors would like to express their gratitude toward the volunteer consultants who