JOURNAL OF PALLIATIVE MEDICINE

Volume XX, Number XX, 2020 Original Article

ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2020.0589

The Impact of the Coronavirus Pandemic on Pediatric

Palliative Care Team Structures, Services, and Care Delivery

Meaghann S. Weaver, MD, MPH, FAAP,1 Abby R. Rosenberg, MD, MS, MA,2,3
Abigail Fry, BA,4 Valerie Shostrom, MS,5 and Lori Wiener, PhD, DCSW6

Abstract
Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, commu-
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nication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members.
Methods: Cross-sectional online surveys were posted on seven professional Listservs from May 2020 to June
2020. Data were summarized descriptively and with semantic content analyses.
Results: N = 207 surveys were completed by pediatric palliative program representatives from 80 cities,
inclusive of physicians, nurses, child life, social workers, chaplains, and psychologists. Teams consulted on
<20% of potential or presumed COVID-19 cases in their centers. Sixty percent of personnel were deemed
‘‘essential’’ during the pandemic. One-third of personnel remained in their usual work locale, with some
shifting to support adult palliative services and others working remotely. Over 60% reported a sense of team
‘‘distance’’ compared with ‘‘close’’ team cohesion, associated with physical location of team members
( p < 0.01) and frequency of team counseling, education, or support meetings ( p < 0.02). All programs adopted
a form of telehealth for patient care, although 41% did not receive telehealth training and 73% perceived
unequal care quality with virtual care. Absence of pediatric patients’ family members due to visitation
policies, missing human presence and physical touch, concern for personal and colleague health, and fear of
financial sustainability for programs were notable stressors.
Conclusions: While the number of children diagnosed with COVID-19 receiving hands-on care from pediatric
palliative care teams was reportedly low, the coronavirus pandemic vastly impacted pediatric palliative care
team structure, daily services, and communication models warranting attentiveness to lessons learned and future
direction.

Keywords: coronavirus pandemic; interdisciplinary; pediatric; pediatric palliative care

Introduction and advance care planning have new meaning in the context of
a growing pandemic.5,6 Palliative care teams are utilizing in-

T he impact of the coronavirus pandemic on children,

families, and health care providers is unprecedented.1,2
Palliative care providers, in particular, have responded quickly
and creatively to the emergence of COVID-19 in their com-
munities and clinical practices.3,4 Goals-of-care conversations
novative communication modalities and developing creative
care interventions in the face of required social distancing.7–9
Palliative care partnerships with subspecialty and primary care
colleagues have become a paramount priority across care set-
tings.10–12 As the medical community continues to learn more

1
Division of Pediatric Palliative Care - Hand in Hand, Children’s Hospital and Medical Center, Omaha, Nebraska, USA.
2
Division of Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington,
USA.
3
Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children’s Research Institute, Seattle,
Washington, USA.
4
Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda,
Maryland, USA
5
Department of Biostatistics, University of Nebraska Medical Center, Omaha, Nebraska, USA.
6
Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda,
Maryland, USA.
Accepted December 8, 2020.

1
 2 WEAVER ET AL.
about the impact of the pandemic on pediatric care delivery, a
formal assessment of the experiences of pediatric palliative
care clinicians during the COVID-19 pandemic is warranted to
inform past lessons and future direction.
This Palliative Assessment of Needed DEvelopments &
Modifications In the Era of Coronavirus (PANDEMIC) survey
was developed to learn about the pediatric palliative care pro-
grammatic changes, major challenges, and care interventions
resulting from COVID-19. The survey objective was to both:
(1) describe the early impact of the COVID-19 pandemic on
pediatric palliative care team structures, communication mo-
dalities, and workflow and (2) understand the roles, responsi-
bilities, and reflections of pediatric palliative care providers
during the early weeks of the COVID-19 pandemic.
Methods
Design and sample
Medical settings in the United States providing palliative
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care to children were asked to complete the study survey.
An announcement of the survey was posted with permission
on seven nationally focused Listservs with interdisciplinary
focus: the American Academy of Hospice and Palliative
Medicine (AAHPM) Pediatric Palliative Care Special Inter-
est Group, Palliative Care Research Cooperative (PCRC)
Pediatric Group; Hospice and Palliative Nurse Association
(HPNA) Pediatric Special Interest Group, Association of
Pediatric Oncology Social Workers (APOSW), Social Work
Hospice and Palliative Network (SWHPN), Pediatric Cha-
plains Network, a professional Pediatric Bereavement Care
group, and a clinical Child Life group. Each Listserv posted
one announcement with one follow-up reminder spaced be-
tween 7 and 14 days after initial announcement during the
dates of May 1 to June 26, 2020. For further chain-referral
sampling, the survey link was also e-mailed with one re-
minder message to pediatric palliative care clinical faculty
representative of 10 to 20 programs from each low, medium,
and high COVID-19-burdened epidemiology geographies
based on the Johns Hopkins University Coronavirus Re-
source Center map distribution in this same time frame.13
Measures
Survey questions were designed by a collaborative, inter-
disciplinary study team according to the Tailored Method of
Survey Design.14 The survey instrument (available as Supple-
mentary Appendix SA1) consisted of 52 closed and 5 open-
ended questions: ‘‘Can you tell us about an experience you
have had related to COVID-19 that you feel will stay with you,
always?’’ ‘‘What is something you have learned since COVID-
19 that will impact your palliative practice going forward?’’
‘‘What is something you wished you knew/learned prior to the
COVID-19 pandemic that might have impacted how you ap-
proached palliative care during the pandemic?’’ ‘‘What is
something you wish you knew/learned prior to the COVID-19
pandemic that might have impacted how you approached your
personal family/family life during the pandemic?’’ ‘‘Please
take this opportunity to share any other ways that your work has
been impacted by COVID-19 that have not been captured in
this survey.’’
The survey was independently reviewed, piloted, revised,
and repiloted by an interdisciplinary team (two physicians,
two social workers, two nurse scientists, one chaplain, and
one mixed methodologist) before administration on Survey-
Monkey.
Data collection and analysis
The Office of Human Subjects Research Protections at
the National Institutes of Health determined that the survey
format and content qualified as exempt from full Institutional
Review Board review. A SurveyMonkey questionnaire for-
mat was utilized for online data collection.
The analyses were descriptive and univariate in nature.
The study team utilized counts for categorical variable re-
sponses. For missing responses due to skip patterns in the
survey, the number of responders was used as the denomi-
nator (actual n). PC SAS version 9.4 was used for all sum-
maries and analyses. The statistical level of significance was
set to 0.05 for all analyses. Categorical data were analyzed
using chi-square tests or Fisher’s exact tests when expected
cell counts were low. Frequencies and percentages are pre-
sented. Nonparametric Mann–Whitney tests were used to
examine differences in ‘‘sense of team cohesion’’ categories.
The study team a priori separated free-text narrative re-
sponses according to three classifications: professional/work
impact, personal/family life impact, and end-of-life care im-
pact. This article includes the semantic content analyses for
the free-text responses relevant to professional/work impact.
Using MAXQDA software, a theme was applied to each free-
text response according to the response content, with themes
then tallied for counts.
Results
Survey respondents included 207 pediatric palliative care
team members from 80 cities within 39 states and the District
of Columbia representative of 38 northeastern, 51 southern,
58 midwestern, 34 western, and 23 southwestern regions as
defined by the National Geographic criteria. Five international
responses were removed due to the geographic focus of the
survey. Respondents included 76 physicians, 40 nurses, 23
advance practice providers, 19 chaplains, 17 social workers,
16 child life specialists, 5 psychologists, 3 bereavement co-
ordinators, and 8 other roles (integrative or programmatic
administrators). Pediatric palliative care programs are notably
young with over half of programs established over the past
decade, 38% developed within the past 10 to 20 years, and
only 7% of programs in existence for more than 20 years.
Patient care
All respondents perceived that their work had been im-
pacted by the COVID-19 pandemic in the initial survey
screening question. The actual hands-on care of COVID-19
presumed or positive patients by pediatric palliative care
teams was notably low. Ninety-eight percent of respondents
shared that fewer than 20% of the pediatric patients in their
care setting were presumed or positive for COVID-19. The
majority (93%) of pediatric palliative care teams consulted
on <20% of potential or presumed COVID-19 cases in their
centers. Potential pediatric COVID-19 cases or confirmed
pediatric COVID-19 cases were automatic referrals to the
pediatric palliative care service in <5% and 7% care settings,
respectively.
 PANDEMIC IMPACT ON PEDIATRIC PALLIATIVE CARE
Fifty-four respondents reported a decrease in overall hos-
pitalization census in their care setting, with 39% reporting
no change and 7% experiencing an increase in care volumes.
Of those experiencing no change in overall hospital census,
14% depicted ‘‘not seeing inpatients as regularly as a palli-
ative care team.’’ There was not a statistically significant
difference in the proportion of total hospital or clinic patients
followed by pediatric palliative care teams six months before
or during COVID-19 with noted steady percentage of total
palliative care cohorts across settings.
The proportion of interactions with patients receiving
palliative care services shifted toward children with chronic
complex diagnoses compared with children with acute criti-
cal illness. Before the COVID-19 pandemic, 56% of re-
spondents reported critical care patients comprised 25% to
50% of daily care interactions; while during the early weeks
of the COVID-19 pandemic, 46% of respondents reported
critical care patients now compromised <25% of daily care
interactions. The proportion of palliative care services pro-
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vided to hematology/oncology, cardiology, and neonatology
cohorts remained consistent before and during the pandemic.
Team structure and staffing
Pediatric palliative care personnel were deemed ‘‘essential
personnel’’ during the early weeks of the pandemic according
to 60% of respondents and ‘‘not essential personnel’’ according
to 7%. The labeling of ‘‘essential’’ was not addressed by ad-
ministration in 34% of centers.
The staffing of pediatric palliative care teams was con-
sistent six months before the COVID-19 pandemic and at the
time of survey completion with an average of three physi-
cians, two advance practice providers, one social worker, one
nurse case manager, one chaplain, and zero to one integrative
therapist per program. While the interdisciplinary makeup of
teams did not change during the pandemic, work location and
physical presence of team members shifted, with one-third of
team members remaining in their usual work locale.
One-quarter of the pediatric palliative care team mem-
bers worked from home ‘‘some of the time’’ and 44% worked
from home ‘‘all of the time’’ due to COVID-19. Physicians
assigned to clinical service coverage were least likely to have
changes in their work locale, with 61% of team physicians
remaining physically present in the workplace, although 92%
of team physicians were reported as working from home
‘‘some of the time’’ or ‘‘all of the time’’ when not assigned to
cover clinical service. Thirty-eight percent of child life spe-
cialists, 30% of advance practitioners, 27% of chaplains, 24%
of social workers, 18% of integrative therapists, 17% of be-
reavement specialists, and 13% of psychologists were re-
ported to have remained in the usual work locale during the
pandemic.
Team roles and responsibilities
One-quarter of physicians, 22% of social workers, 16% of
advance practitioners, 14% of nurses, 6% of chaplains, and
6% of child life specialists were asked to cover roles and
duties outside of their usual scope of palliative care practice
during the pandemic. Palliative care team members engaged
in pandemic-relevant services such as developing and sup-
porting resilience interventions for colleagues (75%), ethics
work related to the pandemic (59%), policy writing such as
3
resource allocation policies (45%), and other services (8%)
including screening employees for COVID-19 and offering
flexible support throughout the health care organization.
Respondents voiced ‘‘pressures for palliative care pro-
ductivity from hospital administration’’ during COVID-19 in
clinical work (28%) and academic work (13%). However, an
average of 3 (range 0–20) palliative care team projects per
site were on hold due to COVID-19.
An equal number of respondents (43%) shared that there
have been personal income cuts or financial losses for palli-
ative care staff members, while 12% were not sure about the
economic impact. One-third (33%) of respondents depicted
‘‘having to adapt because team members were personally
impacted by COVID-19.’’ Adaptation was described as fol-
lows: team members or their immediate family members
diagnosed with coronavirus or quarantined due to exposure;
or schedule adjustment due to changes in teammates’ child-
care or homeschooling coverage.
Twenty percent of pediatric palliative care team members
offered to cover adult COVID-19 cases at their center or
elsewhere, 20% were asked to cover adult cases, and 60%
were not asked or did not offer to cover adult cases. Factors
that motivated the decision to cover adult COVID-19 cases
were both personal and institutional according to optional
open-ended responses: pediatric palliative team capacity and
ability partnered with the necessity of local adult palliative
care staffing needs, desire to help, institutional and team
commitment to serve, administrative policy, and sense of
moral duty. Open-ended responses on decision not to cover
adult patient included personal discomfort or lack of adult
patient need.
Workflow
Reasons for palliative care consults were reported as un-
changed by 85% of respondents. The 15% that reported a
shift in the topic of palliative care consults described a need
for increased support and resilience care for family caregiv-
ers related to loneliness, fear, anxiety, stress associated with
the visitor restriction policies, and tangible family needs.
Pediatric hospice enrollment patterns were reported as
follows: unchanged (62%), increased due to family initiation
(14%) or provider initiation (6%), and decreased (11%). Eight
percent of centers did not have access to pediatric hospice
services.
Physician Order for Life Sustaining Treatment form
completion patterns were unchanged (80%), increased due to
family initiation (11%), or increased due to provider initia-
tion (9%) during the pandemic.
Advocacy services for children and families remained a
palliative care priority during the pandemic, with financial
assistance programs and connection to public programmatic
resource (77%), child neglect/abuse (73%), food insecurity
(59%), and homelessness (31%) services available through
the palliative care team’s medical center affiliations.
Team cohesion and supports
The sense of team cohesion shifted during the pandemic with
61% of respondents stating that the interdisciplinary pediatric
palliative care team felt more distant, 19% stated that the team
felt closer, and 20% reporting no change in sense of team
cohesion (Table 1). Perception of team cohesion correlated
 4 WEAVER ET AL.

Table 1. Perceptions of Team Cohesion Early in the COVID-19 Pandemic

Category Subthemes
(% respondents) (no. of phrases per subtheme)
More distant Loss of personal connections
(61%) and team cohesion (41)
Negative impact of remote
work on collaborations and
workflow (30)
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Exemplary quotes
‘‘Lack of face to face contact has limited emotional sharing of
psychological burdens often associated with our job.’’
‘‘We just don’t see each other.’’
‘‘Sign out is more chaotic and disjointed as not together as a
group.’’
‘‘Team projects have paused.’’
‘‘With some team working from home and some at institution
with rapid changes in processes—often hard to keep
everyone on the same page’’
‘‘Early on there were clear cracks in how the doctors interacted
together. Small frustrations were blown way out of
proportion. I thought—and still worry—that this could break
us as a team. Six weeks in, we miss each other and have not
worked closely in far too long. People who are working from
home feel ineffective and are frustrated. It’s hard to
understand the service unless you are in it, and I’ve had to

say, ‘You’re going to have to trust me about what’s in front

Closer Purposeful communication
(19%) and promotion of team
cohesion and connections
(16)
Intentional promotion of team
focus on solidarity in
mission and purpose (14)
Unchanged (20%) Unchanged
NA, not available.
of me.’ It’s impossible for us to maintain our closeness and
feel like a high performing team under these conditions.’’
‘‘I don’t feel as comfortable reaching out for a second opinion
when my colleagues are at home with their kids. Not because
they have said they’re not available but more so me not
wanting to intrude.’’
‘‘More regular check-ins, collaborations, and communication
about challenges due to pandemic.’’
‘‘The group is planning visits and strategies of care for the
patients working together even more closely than before.’’
‘‘Greater sense of solidarity; ‘we are all in it together’ and
desire to pitch in to help one another.’’
‘‘Increased consideration of families and the fragility of life;
empowering our work.’’
‘‘Total trust to continue to collaborate well to optimize the
support we provide our patients and families. Stretching our
abilities and showing a powerful calming presence in the
storm. Very proud and humbled to share in this sacred
calling of pediatric palliative care.’’
‘‘More grace and caring toward one another.’’
NA

with increased closeness when physical location of team
members remained at the care setting rather than working from
home ( p < 0.01) and increased frequency of team counseling,
education, or support meetings ( p < 0.02). The perception of
team cohesion was not impacted in a statistically significant
way by professional role, team longevity, frequency of dis-
cussions about patients, or rounding format.
Availability of virtual formats to support palliative care
team members was notably increased during the pandemic:
71% reported an increase in the availability of professional
counseling services; 71% reported an increase in educational
sessions about communication, ethics, self-care, and topical
discussions; and 44% reported an increase in team building
activities or team resiliency/support offerings.
Communication: Team, family, and technology
Frequency of palliative care team communication about
patients shifted during the pandemic. Seventeen percent of
teams discussed palliative care patients ‘‘more than one time
per day’’ before the pandemic, while <10% of teams did so
during the pandemic. Teams who discussed patients ‘‘weekly’’
before the pandemic (25%) remained consistent in that fre-
quency during the pandemic.
Communication with families was reported as more deci-
sional (‘‘more direct process of sharing goals of care’’) by 30%
of respondents and more frank (‘‘clearer use of the word death
and more candid discussions about poor prognosis’’) by 15%.
Family member physical presence in patient interactions
during the pandemic was restricted, with 83% of centers re-
porting fewer extended relatives present for the child’s care
interactions with the palliative care team. Over three-quarters
of centers allowed for either one or two parents at the bedside
for children hospitalized during the pandemic, while <1%
allowed for additional relatives to visit hospitalized children
during the pandemic.
Over half of respondents noted that the format of inter-
disciplinary inpatient rounds shifted to remote technology
 PANDEMIC IMPACT ON PEDIATRIC PALLIATIVE CARE
with an additional one-quarter depicting a hybrid mixture of
in-person and virtual inpatient rounds. Thirteen percent of
teams did not change their in-person interdisciplinary rounding
format. Seven percent of teams stopped doing interdisciplinary
rounds during the pandemic.
Telehealth was offered by 26% of centers before COVID-
19 and by 100% of centers during COVID-19. Seventy per-
cent of respondents were using telehealth for both inpatient
and outpatient palliative care encounters during the pan-
demic, 27% for outpatient only, and 3% for inpatient only.
Despite the rapid uptake of telehealth as a communication
modality, 73% of respondents perceived that the quality of
care provided by telehealth as not equal to the quality of in-
person care. Despite the universal use of telehealth, 41% of
respondents did not receive any training in telehealth before
telehealth implementation. Perception of the quality of care
offered by telehealth did not correlate with prior use of
telehealth ( p = 0.5) or telehealth training ( p = 0.9).
Telehealth proficiency was the majority (43%) of free-text
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content response to the question, ‘‘What is something you
wished you knew/learned prior to the pandemic that might
have impacted how you approached palliative care during the
pandemic?’’ Likewise, 24/73 (33%) responses to the open-
ended question, ‘‘What is something you learned since
COVID-19 that will impact your palliative practice going
forward?’’ consisted of a positive future commitment to tel-
ehealth use: ‘‘Being able to provide the same level of care by
focused conversations and phone calls, making telehealth
work, which is truly the best way to see palliative care pa-
tients where they are [located].’’ Four percent shared a cau-
tion about telehealth replacing the power of in-person
presence: ‘‘active listening, honesty, warmth so important to
establishing trust are much harder to do remotely.’’
Professional moments with personal impact
Poignant narrative memories of providing pediatric palli-
ative care during the pandemic (Table 2) were depicted in
terms of transition to virtual interactions (34%), maintenance
of team identity and establishing essential roles (22%), re-
spect for human presence and physical touch (16%), witness
to visitor restriction policies’ impact on family separation
(14%), commitment to tangible preparedness (7%), fearing
economic impact or jeopardy of a secure job (5%), and
experiencing exposure or illness in self or colleagues (3%).
Discussion
The survey results suggest that although the burden of
symptomatic coronavirus cases early in the pandemic epi-
demiologically leaned toward adult patient cohorts; pediatric
palliative care team structure and staffing, personnel roles
and responsibilities, service delivery and workflows, cohe-
sion and communication were profoundly impacted.
Pediatric palliative care providers, formally deemed ‘‘es-
sential personnel’’ in the majority of centers, participated in
key roles and flexible responsibilities during the early weeks
of the pandemic. While little is known about the informal
work and institutional service of pediatric palliative care team
members before the pandemic,15 palliative care teams lev-
eraged extensive service toward staff and colleague resil-
iency initiatives, ethics work, policy writing, communication
training, advocacy work for vulnerable children and families,
5
and flexible staff coverage. The survey results point to the
many roles pediatric palliative care team members undertook,
often without training, to step up and support patients, fam-
ilies, colleagues, and health systems during the pandemic.
As a subspecialty uniquely positioned for ‘‘ages and
stages’’ approach to care, some pediatric palliative providers
transitioned to assisting their adult medicine palliative col-
leagues within their geographies, modeling opportunity for
partnership. The palliative care and hospice boards are un-
ique in boarding across age spans with many pediatric pal-
liative providers having completed adult-based fellowship
programs.16,17 Some pediatric palliative providers did not
perceive adult coverage was within their skill set or practice
range. This raises renewed consideration for potential col-
laborations and synergistic didactics or shared teaching for
palliative practice groups across patient ages.
For a field deeply committed to supporting patients
through inclusion of family members, physical distance of
essential family members and caregiver loneliness resultant
from hospital visitor policies were notably felt by palliative
care team members. This, compounded by reported loneli-
ness with colleagues due to working remotely, revealed a
perception of distance and isolation. Close follow-up for
team health and programmatic unity will be important in the
transition toward a ‘‘new normal’’ for families and the teams
caring for children.
Pediatric palliative care provider personal and professional
well-being has been impacted by the fear, uncertainty, and
grief brought on by the pandemic.18 The pressures and stresses
of COVID-19 require strategic and purposeful attentiveness
to staff support interventions focused on quality and sustain-
ability of care.19 The pandemic emphasizes the need for de-
liberate attention toward not just individual resilience but also
for organizational-level resilience resources and staff support
strategies.20 Implementable approaches for promoting team
resilience and workforce well-being, such as the Promoting
Resilience in Stress Management at Work Program and the
signposting of discipline-specific resilience initiatives, repre-
sent essential priorities.21,22 Ideally this translates into sus-
tainable models within hospitals and community settings for
integrated support for health care workers.23
While this study is informative in providing an overview of
the impact of the coronavirus pandemic on palliative care
services for children and families, there are noted limitations.
The response rate could not be feasibly calculated due to
overlapping membership on Listservs (many respondents
were listed in multiple Listserv groupings), and thus, the de-
nominator of total surveys distributed is unknown. The study
team received five correspondences from participants stating
that they faced technology interruptions to survey completion.
Although programs were requested to provide one respondent
per site, this could not be guaranteed due to anonymity. The
survey relied on self-report rather than program investigation,
and thus, there could be an inherent bias in over- or under-
reporting programmatic changes. Practice of nonresponders
may vary from that of responders.18 Finally, this survey was
conducted early in the pandemic and may not represent the
current state of many programs. Indeed, the continued in-
crease in the number of patients with COVID-19 is likely to
create persistent stressors and system-level changes that were
not captured in this survey. Such patterns suggest that the data
presented here represent more conservative and ‘‘better case’’
 Table 2. COVID-19 Challenges: Narrative Themes with Exemplary Quotes
Narrative theme (no., %
responses, n = 172 total)
Transition to virtual
interaction
(n = 58, 34%)
Maintenance of team identity
and essential roles
(n = 37, 22%)
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Respect for human presence
and physical touch
(n = 27, 16%)
Witness to visitor restriction
policies’ impact on families
(n = 24, 14%)
Commitment to tangible
preparedness
(n = 12, 7%)
Exemplary quotes
‘‘Also, the joy and gratitude from the families when we are able to get Zoom going. I
found myself without words when I bore witness to families seeing each other for the
first time in many weeks—even if their loved one was intubated and sedated.’’
‘‘I am a child life specialist and learning to play with kids through a virtual platform has
been challenging but is also doable.’’
‘‘I baptized a child who was awaiting a life-saving liver transplant using VidYo (and
carried into room on an iPad) at the request of his parents. I was the words, dad held the
child, and mom’s hands applied the water. That is the short version. Being creative and
working with what you have to meet a patient/parent wishes when being physically
present is not an option during a sacrament in which the officiant is normally physically
present and some spiritual paths mandated to be so.’’
‘‘I feel like we are practicing with one arm tied behind our backs. We cannot do many
things That we usually can’t do. This makes us feel that we cannot do our jobs as well
and deliver the same patient care. As we do not have as many providers in the hospital
or work tends to be end of life in pain and symptom management and thus has a higher
impact on the mental health of providers.’’
‘‘Caring for dying children right now is much more difficult and sad. I don’t know if it’s
the larger grief and stress we are all facing, or the lack of my team members with me, or
if people are making different choices than usual and deaths are clustering, or what the
root of it is. I had eight deaths in one week and was very emotionally alone and
clinically alone through all of it. I’m not a novice- I am mid-career- and it was really
hard. Trying to balance which patients to check on from home and which need to be
seen in person has led to a great deal of conflict within the team. That conflict and
difficulty will stay with me for a long time. When you are caring for dying kids, don’t
have help, and your colleagues are questioning you- it’s not a recipe for professional
health.’’
‘‘That we are, and always will be, essential.’’
‘‘Learning to share compassion through an empathetic presence without physical touch.
Attentive eye contact, and sincere conversations despite the need for mask. Stretching
our abilities, yet learning new skills to connect well with great compassion for those we
serve.’’
‘‘Social distancing during encounters has been difficult. Sitting 6 feet away, wearing
masks, not being able to hug or offer physical support has been difficult.’’
‘‘Healthcare workers tend to put their heads down and power through in stress. I am not
sure some will stay in healthcare after. Finding ways to interact with families without
using up precious PPE is a challenge. We talk in hallways and conference rooms when
we used to be at bedside. Finding ways to express compassion and kindness over a mask
with just my eyes is a daily goal.’’
‘‘Have a mother crying and very upset about her dying infant and not being able to hug
her. It will stick with me. I hated it.’’
‘‘It has been heartbreaking to see children dying in the hospital with only one parent at the
bedside. While we try to make exceptions for end of life, it has not been possible in
every case. Single parents have been particularly vulnerable as they have not been able
to have extended family with them for support.’’
‘‘A child with severe brain injury was left in the PICU without family present as the parent
could not stay 24/7 and care for the other children. The patient’s parents struggled
significantly due to the sudden onset of the illness and brain injury and after 6 weeks of
separation, worked with the team to get permission to come in to discuss goals of care
and transition to comfort care. The family lost 6 weeks of time with the child at the end
of life.’’
‘‘I will never forget telling a mama that her child would die, while the child’s dad looked
helplessly on via facetime, because he had not been allowed on campus due to new
COVID-19 restrictions. It was heartbreaking.’’
‘‘A young mother facing removal of life-sustaining technologies (extubation) of her
toddler with only one other family member able to visit with her and their priest
performing a ritual from the hospital parking lot.’’
‘‘How awful, awful, awful it is when a family is not whole; when only one parent can be
with a child. How staggering the suffering is for all family members and how helpless
we feel in our work to minimize suffering.’’
‘‘Being prepared with proper PPE for all situations.’’
‘‘Having more supplies on hand.’’
(continued)
6
 PANDEMIC IMPACT ON PEDIATRIC PALLIATIVE CARE 7

Narrative theme (no., %
responses, n = 172 total)
Fearing economic impact or
jeopardy of job
(n = 9, 5%)
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Table 2. (Continued)
Exemplary quotes
‘‘Being laid off due to ‘inability to bill for services’ caused me to question many things,
and prompted me to work harder.’’
‘‘This has never been more important, and yet my role is at risk of being cut (due to
decreased hospital revenue) rather than utilizing my skills across our system. We
volunteered to aid our adult facilities to highlight the value of our work in crisis
communications. It deeply saddened (and frightened) me that using my skills more
broadly was not our Administration’s first thought.’’
‘‘I’m mostly concerned of financial impacts for next few years given overall health system
strain which will most likely impact palliative team growth efforts.’’
‘‘It has been a challenge to get institutional support for palliative care from the beginning,
but now it feels even more challenging. I think this may be due to the significant
financial impact on a free-standing children’s hospital with decreased census. With the
loss of several team members, our team will face significant challenges rebuilding.’’
‘‘Financial stability is now really significant. Scrambling to find more funding sources—
MD is going to pick up medical directing for local hospice, trying to find new donor.
Worried about long term financial ramifications..will we be the next cut?’’

Experiencing exposures or
illness in self or colleagues
(n = 5, 3%)
‘‘We have a colleague in the hospital who is only just extubated and trach-ed. They are
still on dialysis.’’
‘‘Helping a colleague access testing after she found out she was exposed to a COVID+
patient; witnessing her fear & sadness.’’
‘‘I am immune suppressed and very scared.’’
‘‘Every nursing home around us has been hit hard by the pandemic. Many of our staff were
sick, and several have had family members die of the infection.’’

scenarios for many centers. Strengths of the study include in-
terdisciplinary representation, diversity in programmatic size
and maturation, and a sample size representative of geographic
regions throughout the United States.
Conclusion
As the first study to investigate the impact on pediatric
palliative care teams in the United States during the pandemic,
this novel overview survey raises topics worthy of future in-
depth exploration of topical areas. The rapid uptake in tele-
health during the pandemic is juxtaposed with respondents’
concern regarding the quality of care provided through tele-
health. Telehealth modality evaluation and communication
training remain research priorities for the field of pediatric
palliative care, particularly with inclusion of child and family
caregiver perspectives.19 Seriously ill children often live at a
distance from treatment centers, warranting consideration of
whether telehealth may help bridge the care or communica-
tion gap for families.20–22 While telehealth uptake in pediatric
palliative care had historically been slow,23,24 this study
showed that pediatric interdisciplinary teams now utilize tel-
ehealth and may have the potential to foster communication
and connection through telehealth although teams are in need
of additional telehealth training and quality outcome mea-
sures. The survey suggests a need to track financial vulner-
abilities and sustainable care models for pediatric palliative
programs.
Already the COVID-19 pandemic has impacted pediatric
palliative care providers through significant changes in daily
practice paradigms and interactions with other health care
providers, patients, and families. As pediatric palliative care
providers continue to reflect upon the lessons learned during
the pandemic, there remains work ahead to ensure that the
vulnerabilities exposed by the pandemic receive attentive-
ness and that the beneficial processes learned during the
pandemic are sustained and improved upon.
Acknowledgments
The authors wish to thank colleagues for assistance with
survey distribution. They also wish to thank Dr. Erica Kaye,
Dr. Kitty Montgomery, Dr. Deb Fisher for their thoughtful
review of the survey instrument. The authors appreciate the
work of the American Academy of Hospice and Palliative
Medicine (AAHPM) Research Committee for formative feed-
back on the survey content.
Funding Information
This research was supported (in part) by the Intramural
Research Program of the NIH.
Author Disclosure Statement
No competing financial interests exist.
Supplementary Material
Supplementary Appendix SA1
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Address correspondence to:
Meaghann S. Weaver, MD, MPH, FAAP
Division of Pediatric Palliative Care - Hand in Hand
Children’s Hospital and Medical Center
8200 Dodge Street
Omaha, NE 68114
USA
E-mail: meweaver@childrensomaha.org
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