Pediatric Oncology Providers Perceptions of Barriers and Facilitators to Early Integration of Pediatric Palliative Care

Pediatric Oncology Providers Perceptions of Barriers and
Facilitators to Early Integration of Pediatric Palliative Care
Todd Dalberg, DO(1), Elizabeth Jacob-Files, MA(2), Patricia A. Carney, PhD(3), Jeffrey
Meyrowitz, MD(4), Erik Fromme, MD, MCR(5), and Gregory Thomas, MD(1)
(1)Department of Pediatrics Division of Pediatric Hematology-Oncology, Oregon Health & Science
University, Portland, OR
(2)Department of Family Medicine, Oregon Health & Science University, Portland, OR
(3)Departments of Family Medicine and Public Health and Preventive Medicine, Oregon Health &
Science University, Portland, OR
(4)Department of Pediatrics, Oregon Health & Science University, Portland, OR Program Year 2
Pediatric Resident
(5)Division of Hematology and Medical Oncology, Knight Cancer Institute, and Palliative Medicine
& Comfort Care Team, Oregon Health & Science University, Portland, OR
Abstract
Background—Pediatric patients experience significant symptoms during cancer treatment.
Symptom management is frequently inadequate. We studied perceptions of pediatric oncology
care providers regarding early integration of palliative care (PC) for pediatric patients to identify
barriers and facilitators that might assist in understanding how care could be improved.
Procedures—Pediatric oncology providers were recruited to participate in four focus groups. A
proposal for early integration of a pediatric palliative care team (PPCT) was presented and
followed by a facilitated discussion. Data were analytically categorized into themes by three
independent coders using constant comparative analysis and crystallization techniques. A
consensus approach was used to indentify final themes.
Results—Barriers to the proposed care model of early integration of a PPCT included provider
role, conflicting philosophy, patient readiness and emotional influence and were more prevalent in
the physician participants compared to nurse practitioner, nursing, and social work participants.
Facilitators included patient eligibility, improved patient care, education, and evidence-based
medicine. Though all participants were invested in providing optimal patient care, physician
participants believed the current standard of care model is meeting the needs of patients and
family, while the nurse practitioner, nursing, and social work participants working on the same
healthcare team believed the proposed care model would improve the overall care of children
diagnosed with cancer.
Conclusions—Differing perceptions among healthcare providers regarding the care of children
with cancer suggest that team functioning could be improved. Avenues for pilot testing early
integration of PC could provide useful information for a next study.
Keywords
Palliative care; Pediatric; Oncology; Perceptions; Barriers
Correspondence to: Todd Dalberg, DO, Pediatric Hematology-Oncology, Oregon Health & Science University, 3181 SW Sam
Jackson Park Rd., Mailcode: CDRCP, Portland, OR 97239, [e-mail], Telephone: [phone], Fax: [phone].
NIH Public Access
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Pediatr Blood Cancer. Author manuscript; available in PMC 2014 March 26.
Published in final edited form as:
Pediatr Blood Cancer. 2013 November ; 60(11): 1875–1881. doi:10.1002/pbc.24673.
NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript

Introduction
Although supportive care is improving for pediatric oncology patients,1 many children
experience significant symptoms during cancer treatment and at end of life.2, 3 In 2000,
Wolfe et al. reported that 89% of parents whose child had died of cancer stated their child
experienced “a lot” or “a great deal” of suffering from at least one symptom during the end
of life.3 Parents also reported that successful treatment of these symptoms occurred less than
30% of the time. In another study of children with cancer, uncontrolled suffering at end of
life was more common among children undergoing stem cell transplant compared to those
not receiving a transplant.2 These observations may be a result of discordance between
physicians’ and parents’ perceptions of symptoms in ill children.3 A 2008 follow-up study1
documented a greater emphasis on palliative care (PC) in children who died of cancer which
correlated with better patient experiences, including less suffering and increased parental
preparedness prior to their child’s death.
In 2000, the American Academy of Pediatrics recommended pediatric palliative care (PCC)
be integrated early on as part of care provided to children with life threatening conditions.4
Despite these recommendations and evidence that supports the benefits of early integration
of (PC), barriers to incorporating this service exist. These include concerns about uncertain
prognosis, perceptions that families are not ready to acknowledge their child has a
potentially incurable disease, and a lack of access to PC consultation.5 Thompson, et al.
surveyed pediatricians and found that almost half believed that PC is indicated only at the
end of life when curative treatment is no longer a goal.6 Three of four studies on when to
introduce PC have been conducted with general pediatricians.5, 6, 7, 8 To our knowledge, no
research has focused specifically on perspectives of pediatric oncology providers. One study
examined PC consultation among children who died from cancer and found that 40% of
referrals took place after the first relapse, with 16% occurring within the first 30 days of
diagnosis.9 Our study investigated pediatric oncology providers’ perceptions of barriers and
facilitators to early integration of a pediatric palliative care team (PPCT) as a standard part
of treatment for children with cancer.
Methods
Participants and Procedures
We conducted four focus groups with pediatric oncology providers at an academic
children’s hospital. The Institutional Review Board approved all study activities. Pediatric
oncology providers included attendings, fellows, nurse practitioners, social workers and
nurses. Exclusion criterion included unwillingness or inability to participate in a focus group
session. Participants were recruited through written invitation and were consented
electronically. Participants were divided into three groups: 1) physicians and fellows, 2)
nurse practitioners and social workers, and 3) inpatient and outpatient nurses. This was done
to take advantage of each group’s specific expertise and how this might inform their
perspectives, and to encourage willingness to honestly express viewpoints, which might not
occur if hierarchical persuasion existed. Two focus groups were held with nurses to
accommodate work schedules, for a total of four exploratory focus groups. We conducted
two validation focus groups after initial analysis was performed to verify emergent themes
based on selected exemplars to substantiate our findings. This additional step strengthened
the findings by having participants affirm or clarify any discrepancies in our interpretation
of emerging themes in the initial data set.
Prior to participation in the focus group, participants completed a demographic survey and
clinical practice history, which asked about age, gender, profession, training completion
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year, and years of clinical practice. At the beginning of each focus group, participants
observed a 10-minute presentation by author TD outlining a proposed model for early
integration of PC, including the study institution’s indications for PC referral (Table I).
Participants were then allowed to ask clarifying questions. Author PAC facilitated the rest of
the focus group using an interview schedule (Supplemental Appendix) designed to elicit
perspectives regarding early integration of palliative care in a neutral, non-leading way
while using prompts to clarify or to delve more deeply into responses. The focus groups
occurred between March and November 2011.
Data Collection and Analyses
Focus groups were audio recorded, de-identified and transcribed verbatim by an independent
transcription service, and double-checked for accuracy. Resultant data files were loaded into
NVivo qualitative analysis software v.8.010 for coding and analysis. The analytic approach
used constant comparative analysis and immersion/crystallization, which involves: 1)
independent identification and reflection of emerging themes, 2) creating a codebook, 3)
merging codes into similar themes, and 4) using a consensus approach to identify final
emerging themes. 11–13 Three authors (TD, EJF, JM) independently coded during the first
immersion/crystallization cycle to develop a preliminary codebook. The codebook was
refined as were themes and relationships among themes during the second immersion/
crystallization cycle until consensus was reached among the analytic team. At designated
intervals, the focus group facilitator met with analysts to review, independently audit, and
assess the validity of emerging findings. The goal of this approach was to group similar
themes together while accounting for each unique code. Once the final codebook was agreed
upon, investigators coded each subsequent transcript using discussion and eventual
consensus.
Results
Demographics
Participants of initial focus groups included 15 physicians, seven nurse practitioners, two
social workers, and nine inpatient and outpatient nurses. Of the original 15 physicians, 12
(80%) participated in the validation focus group. Four of the original five nurse practitioners
(80%), both of the social workers, and two of the original nine nurses (22%) participated in
the validation focus groups. Reasons for not participating in the validation groups included
work schedule conflicts, which affected the nurses disproportionately, as well as providers
who had since taken positions at other institutions.
The mean age of focus group participants was 41 years of age, with a range of 29–66, with
twice as many females as male (Table II). The focus group data analysis identified four
themes associated with barriers and five themes that served as facilitators of early
integration of pediatric palliative care.
Barriers—Barrier themes included: 1) provider role, 2) conflicting philosophy, 3) patient
readiness, and 4) emotional influence (Table III).
Provider Role: Participants in all provider groups reported concern about overlap in roles
between the primary oncology team and the palliative care team. Physicians expressed views
indicating patients’ PC needs are already adequately addressed by the oncology team, which
typically includes a primary physician, nurse and social worker. Both physicians and nurses
raised concerns that having another team addressing aspects of PC might negatively affect
the physician/patient/family relationship. One physician indicated the proposed early
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integration care model could make the oncologist, “look bad.” This comment resonated
throughout the physician group.
Conversely, nurse practitioners and social workers indicated that patient needs are not
adequately being met when palliative care is offered only when cure is no longer the goal.
Despite recognizing the potential overlap in patient care by the oncology team and the
PPCT, nurses also believed this model could better meet the complex needs of children with
cancer compared to the current model. Among nurses and nurse practitioners, general
consensus existed that patient symptoms, particularly psychosocial symptoms, contributed to
lower quality of life and could benefit from more focused attention. The validation group
confirmed this finding.
Participants in both validation focus groups identified the physicians’ need to control aspects
of patient care. Most physicians perceived treatment-related symptom management and
discussions of diagnosis, prognosis, and treatment options as responsibilities of the treating
physician alone. Although the PPCT was viewed as a subspecialty with specific expertise, a
subset of physicians commented that consults from other subspecialists (e.g. pediatric
nephrologists) are embraced more willingly than palliative care consults. Physicians also
made a distinction between treatment-related symptoms and disease-related symptoms,
indicating the oncology team could best manage the former, while the latter may or may not
be best managed by the PPCT. In the validation group, physicians clarified the purpose of
the PC consult within the first month of diagnosis as being for educational purposes only.
Conflicting Philosophy: Approximately half of the physician participants believed the
purpose of PC is inconsistent with cure and only appropriate when cure is no longer the
goal. Non-physician focus group participants did not share this belief. There was consensus
among all participants in the latter group that PC was well suited for children who have a
life threatening disease treated with curative intent. Concerns were expressed by many
participants that introducing the PPCT in the first month of diagnosis could lead to
additional parental anxiety, as the lay public often considers -palliative care- to be
synonymous with -hospice care-. Changing the title of the PPCT to the “Supportive Care
Team” or “Quality of Life Team” was proposed as a means of addressing misconceptions.
Patient Readiness: Given the complex information families must digest early in their
child’s diagnosis, nearly all participants expressed concern that introducing the PPCT early
could lead to additional parental burden. Five of 10 attending physicians believed that PC is
inconsistent with curative intent and emphasized that patients and families may not be ready
for a PC consult during the diagnostic period. No attending physicians contradicted this
perception in the initial focus group or the validation group. However, non-physician
participants expressed that the anxiety caused by early integration of a PPCT would be far
less than the anxiety experienced during relapse or disease progression. Overall, provider
groups stated the early integration model places a burden on patient families. Introducing
this model as standard of care was accepted by most participants as a means to alleviate
potential anxiety a family might experience when meeting the PPCT.
Emotional Influence: Several providers, especially nurse practitioners, were concerned that
primary oncologists’ emotions influence patient care. This occurs when physicians’ hope for
cure, even when the prognosis is poor, may bias treatment decisions and how information
regarding therapeutic options is relayed to patients and families. This emotional attachment
and potential bias was perceived to intensify over time. Nurses noted that physicians tend to
be overly optimistic when it comes to their own patients and speculated that the primary
oncologist feels responsible for their patient’s death and that fear of failure influences
decisions. One nurse commented that even with enrollment in a phase I study, where the
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