In-Person and Virtual Adaptation of an Interprofessional Palliative Care Communications Skills Training Course for Pediatric Oncology Clinicians

Abstract

Introduction

Empathic communication is crucial for clinicians when discussing palliative and end-of-life (PC/EOL) care with parents of children with cancer. Unfortunately, many parents report inadequate communication at these distressing times. This study evaluates the communication skills training (CST) clinicians received to deliver a PC/EOL communication intervention as part of a multi-site randomized-controlled trial (RCT). Training was provided using an in-person format and then adapted to a virtual platform to accommodate remote learners.

Methods

Clinicians were trained in dyads (one physician and one nurse [RN] or advanced practice provider [APP]) over 3 days (in-person or virtually). Four pediatric oncology cases were developed and each incorporated three timepoints: diagnosis, disease progression, and end-of life. Training was adapted from VitalTalk^™ and included didactic instruction, videos, visual aids, and role play. Participants completed a confidential, post-training survey. A self-reported quality assurance checklist measured fidelity to the intervention during the RCT.

Results

Thirty clinicians completed training; 26 completed post-training surveys including 46.1% physicians, 30.8% RNs and 23.1% APPs. Most were female (65.4%); white (80.8%), and 40-50 years old (53.9%). Nine (34.6%) trained in-person; the rest trained virtually. Ninety-two percent reported the course was valuable/very valuable for developing PC/EOL communication skills and 96% learned something new. Dyads trained virtually had similar fidelity to those trained in-person (95% and 90% respectively) when delivering the intervention to parents.

Discussion

This PC/EOL CST, implemented in-person and virtually, was valuable for improving pediatric oncology clinicians’ communication skills and was translated effectively into practice.

Introduction

When a child has incurable cancer, parents must make difficult decisions surrounding cancer treatments and end-of life (EOL) care. Research shows that parents desire timely, clear, and honest prognostic information delivered empathically by their medical team to facilitate EOL decision-making for their child.¹ Parents are significantly less upset by prognostic discussions when physicians convey information in a sensitive manner.² Prognostic information should be communicated early and stepwise. Parents need clinicians to be honest about prognosis and to persevere through the discussion when parents express strong emotions. They want clinicians to leave room for hope, even when prognosis is poor.³ Parents’ perspectives must be heard and valued by the medical team, and clinicians must understand that their words have a lasting impact on bereaved families.⁴ Unfortunately, many parents report inadequate communication at these distressing times, reporting incomplete medical information and lack of emotional support or ample time to make decisions.⁵ In a study of prognostic information provided by pediatric oncologists to parents of children with advanced cancer, 3 distinct patterns emerged: (a) absent (no information shared); (b) deferred (information shared only at EOL); and (c) seed planting (hinting at incurability over time).⁶ These findings suggest a significant need for improvement and standardization in communicating prognosis, goals of care (GOC), and benefits of palliative care/end-of life (PC/EOL) support with affected parents.

Previous research has pointed to several reasons behind delayed or inadequate communication delivered by clinicians.^7,8 Lack of communication skills training (CST) has been identified as a problem. In a survey of 110 pediatric oncology fellows, 32% received formal PC/EOL CST during their fellowship; 27% received no PC/EOL CST during medical school, residency, or fellowship; and 21% never received feedback on their PC/EOL communication skills.⁹ Most pediatric oncologists’ CST includes only informal apprenticeships (observations, role modeling), often without feedback, as opposed to recommended communication-focused, experiential-learning activities (role-playing with standardized patient actors, constructive debriefing feedback).⁸

Pediatric oncology nurses (RNs) and advanced practice providers (APPs) also report PC/EOL communication-related challenges. They struggle with determining their role in prognostic-related communication with families and often have received no or limited PC/EOL CST.¹⁰ Pediatric oncology RNs and APPs report not being included in or not informed when physicians meet with parents to discuss prognosis. Fortunately, data support that prognostic-related CST enhances their confidence and skill.¹¹

The Institute of Medicine Report on Delivering High Quality Cancer Care recommends comprehensive and formal CST for cancer care teams about prognosis and palliative care and integrating visual decision aids to personalize information at key decision points along the continuum of the patient’s cancer trajectory.¹² It also states that academic cancer institutions should develop interprofessional (IP) educational programs to train the workforce in team-based care.¹² Within pediatric oncology, training IP teams to deliver palliative care communication is in alignment with national consensus guidelines.¹³ The central tenet of the World Health Organization¹⁴ Framework for Action on Interprofessional Education and Collaborative Practice asserts that IP education “occurs when students from two or more professions learn about, from and with each other to enable effective collaboration and improve health outcomes”. In order to develop a common language and consensus for IP education to prepare health professionals in team-based care delivery, the Interprofessional Educational Collaborative (IPEC) developed 4 IP education competencies—values and ethics, roles and responsibilities, teams and teamwork, and communication—and 33 sub competencies.¹⁵

In light of national recommendations to address recognized gaps in physician and RN/APP prognostic-related CST and parent-identified communication needs, our study team developed an IP, PC/EOL communication intervention and training course to assist pediatric oncologists, RNs, and APPs to discuss prognosis and GOC as an IP team with parents of children with cancer who have less than 50% chance of survival. We developed a prospective-cluster randomized trial to evaluate our PC/EOL communication intervention on children’s EOL outcomes and patient-reported quality of life (parent and child), in the “Informational Meetings for Planning and Coordinating Treatment” (IMPACT) study. This manuscript provides a description of our PC/EOL communication-intervention training courses (in-person and virtual) and the post-training evaluation results.

Methods

We recruited pediatric oncologists, RNs and APPs to form dyads from 8 Children’s Oncology Group–affiliated sites across 8 states. The recruited intervenors were currently working together in their clinical setting on either the solid tumor/sarcoma team or neuro-oncology team. The intervenor dyads were randomized to the intervention or an attention-control group by clinician practice (solid tumor/sarcoma team or neuro-oncology), size of practice (large or medium), and whether the clinicians had previous formal PC/EOL CST.

Intervenor dyads received 3 days of training (in person or virtually). In-person training occurred at a retreat center of Indiana University in November 2019. Dyads recruited subsequently and unable to participate in person due to the COVID-19 pandemic were trained virtually. There were 5 virtual training sessions between July 2020 and January 2023. Virtual training was adapted from in-person training and used the same agenda, didactic presentations, videos, and case-based role plays with simulated actors.

Our PC/EOL communication intervention consisted of a conversation guide based on VitalTalk REMAP¹⁰ modified for use at different time points along the continuum of care with parents of children with cancer (Table 1). In addition, 2 novel features incorporated into the intervention were the use of IP dyads to co-deliver the intervention instead of single clinicians, and the development of 2 visual aids (Diagrams I and II, Figures 1 and 2, respectively) to use alongside the guide. The 2 visual aids were initially developed and pilot tested based on input from the following sources: 1) a comprehensive literature review, 2) expert input from a pediatric oncologist and palliative care expert team members, and 3) expert input from national consultants.¹⁶ Diagram I depicted hope, dual GOC (quality of life and best possible treatment) and team support. Diagram II aided the intervenor dyad in explaining to parents how the relative emphasis on quality of life, acceptance of treatment side effects, expected tumor treatment results, and attitude towards cancer (in the context of prognosis) are incorporated into GOC treatment decisions, which can be broadly defined as “cure the cancer”, “slow the cancer”, and “comfort”, depicted as 3 overlapping circles. For the current study, Diagram II was modified based on current expert pediatric oncology/palliative care provider opinion. Diagram II also illustrates that hope is foundational to all GOC.

Table 1.

REMAPS intervention

	Strategy	Key elements
R	RAPPORT/REVIEW/REFRAME	• Ask family how they are doing currently • Ask-tell-ask: diagnosis • Ask-tell-ask: treatment • Ask-tell-ask: prognosis (using percentages) • Review Diagrams I and II with family
E	EXPECT EMOTION	• Provide realistic hope messages • Provide non-abandonment, “we” messages • Use VitalTalk NURSE Statements (naming, understanding, respecting, supporting, exploring)
M	MAPPING/MEANING	• Ask what matters most to the child/family (values) • Ask about the child/family’s hopes, worries, fears, concerns • Reflective listening
A	ALIGN GOALS	• Review Diagram II: Experiences of Other Families • Introduce concept of goals of care • Establish specific goals of care for child and family. • Demonstrate sensitivity to the fact that families have dual goals of care (ie, cure and comfort)
P	PLAN	• Discuss treatment options consistent with child’s prognosis and family’s goals of care • Determine plan for moving forward based on goals of care, values & hopes. • Discuss recommendations for treatment (eg, cancer-directed therapy, antibiotics, transfusions) • Introduce, explain, and discuss parental preferences for breathing machines and CPR/DNR
S	SYNOPSIS/SUMMARY	• Ask child/family if they have any questions • Express gratitude to child/family • Reassure presence and support of clinical team • Give slides to family for future reference • Plan next visit

Figure 1.

Diagram I: “As a Team.”

Figure 2.

Diagram II: “Experiences of Other Families.”

Our training used VitalTalk course materials and methods, revised for pediatric oncology and training of IP teams. VitalTalk skills such as ask-tell-ask, silence after giving bad news, “I wish/I worry” statements, and expressive use of empathy described by the acronym NURSE (naming, understanding, respecting, supporting, exploring) were taught via didactic PowerPoint presentations.¹⁷ The curriculum included dedicated time to practice using Diagrams I and II with simulated patients. VitalTalk videos depicting difficult conversations between patients, family members, RNs, APPs, and doctors were shown, and the unique roles of IP team members were emphasized. Sample videos of VitalTalk facilitators (L.W., J.H., K.M.) portraying the provider dyad with a simulated patient/parent/family member for pediatric oncology scenarios of breaking bad news, discussing GOC at time of disease progression, and EOL planning at the terminal stage of disease were provided to participants as “booster training” as needed throughout the study.

Four pediatric oncology cases were created from the experience of one of the multiple principal investigators (K.M.) and literature review. Each case depicted a child with a poor cancer prognosis and included 3 different time points: new diagnosis, progression of disease, and EOL. Actors were hired to portray an adolescent patient (in 1 case), parent(s), and family members. The actors were given extensive backgrounds about their illness, mindset, family dynamics, and cultural context. During actor-training, actors were given time to practice their roles with the facilitators (K.M., L.W., E.N.). A key component of the actors’ job was to respond realistically when the clinicians presented the PC/EOL intervention. For example, if the dyad partners did not exhibit empathy when giving poor prognostic information, the actors might respond by disengaging from the conversation or becoming frustrated.¹⁷

IP-focused training was developed and implemented to train participating IP dyads based on lessons learned during the pilot study (eg, without IP-focused training there was low-to-absent RN engagement in parent discussions). All intervenors were provided with a review of IP role principles, including the expectation for equal parts in the discussion by each intervenor dyad member (ie, physician and the non-physician team member). Guided by the IPEC core competencies and sub-competencies, the training course highlighted several key elements such as value diversity, empathy, communication of roles and responsibilities, active listening, and team decision-making.¹⁵ Prior to role-playing with trained actors, the intervener dyads were asked to share their individual communication goals for the role-play activity and their collaborative plan for sharing communication responsibilities. Commonly, the physician would take the lead on providing the medical information, and the non-physician partner would take the lead on explaining the diagrams. However, the dyad interveners could split up the communication tasks any way they chose. Each intervener dyad was assigned to a simulated patient and family member(s) to practice the communication intervention in the context of the 3 clinical time points. Dyads role-played with the same family over the 3-day course to simulate a longitudinal relationship. A brief synopsis of the case (including key medical and social details of the patient and their parent[s] and family member[s]) was given to the dyad in temporal order, immediately prior to each role play. During the role plays, the other dyads watched as one dyad performed the communication intervention and then provided feedback about what the dyad did well. This process enabled participants to learn from each other and observe multiple examples of the intervention delivery.

If learners felt stuck in their interactions or the facilitators sensed the learners needed assistance, a “time-out” was called by the learner or facilitator, respectively. During the time-out, the learning dyad could “phone a friend” or ask observers for suggestions for what to say or do to move the conversation forward. To ensure standardized and consistent delivery of our PC/EOL communication intervention during the study period, dyads were trained to perform quality assurance (QA) on themselves after delivery of sessions with parents. The QA checklist items corresponded with the REMAPS communication intervention topics listed on Table 1. If the dyad did not complete the checklist within 48 hours of the intervention, they would have to complete the checklist after listening to the intervention’s audio recording to reduce recall bias (all intervention sessions were audio recorded). Study intervention fidelity was operationalized as the percentage of tasks completed during the intervention session, with 0% = none and 100% = all.

A post-training survey included closed-ended demographic questions and questions regarding the value of the course using a 5-point Likert-like scale, with 5 representing the most favorable response. Four open-ended questions queried opinions on the learning environment (virtual and in-person), novel concepts learned, general course feedback, and how participants planned to improve their skills when they returned to work. Participants were asked how committed they were to making this change. The survey was sent electronically to the participants and included an informed consent statement. Participants that agreed with the consent statement proceeded to enter their responses confidentially. The MD Anderson Cancer Center IRB approved the survey study. The Indiana University single IRB approved the IMPACT study, which provided the QA data presented in this report to illustrate intervention fidelity during the study to date.

Data Analysis

Descriptive statistics were used to describe the frequencies, median (M), and interquartile range (IQR), of the learners’ responses to the closed-ended survey questions. Open-ended survey text responses were de-identified by the research coordinator to maintain participant anonymity. Qualitative analysis was initially performed using grounded theory by principal investigator K.M.¹⁸ Survey responses were printed out and broken down, line by line, into discrete items, which were labeled with a concept name. Concepts were then analyzed for similar and different properties within various dimensions and further grouped into categories (open coding). Raw data were re-analyzed within this categorical structure to assess for connections among categories as well as divergent properties between categories to develop a contextual framework. Categories identified in open coding were combined and subdivided within context to describe themes (axial coding). To reduce bias, a second research team member (A.H.) similarly analyzed the data independently to identify concepts, categories, and themes. Differences in qualitative data analysis results were discussed among the 2 research team members (A.H. and K.M.) until consensus was reached. Frequencies of categories were calculated. Notable quotes for themes were added for context.¹⁸

Results

A total of 30 intervenors completed training and were invited to complete post-training evaluation surveys. Twenty-six (86%) post-training surveys from intervenors from 6 of our 8 data-collection sites were collected. Twelve (46.1%) of the sample with completed surveys were physicians, 8 (30.8%) were RNs, and 6 (23.1%) were APPs. Most of the sample identified as female (65.4%); white (80.8%), not Hispanic or Latinx (88.5%); 40 to 50 years old (53.9%); and in practice over 10 years (65.4%). Nine participants (34.6%) trained in person; the rest trained using the virtual platform (Table 2).

Table 2.

Demographics

Measure	Item	Count	Percentage (%)
Age	20-30 years	1	3.8
	30-40 years	9	34.6
	40-50 years	14	53.9
	> 50 years	2	7.7
Gender (selected choice)	Female	17	65.4
	Male	9	34.6
Race	White	21	80.8
	Asian	3	11.5
	Other	2	7.7
Ethnicity	Latino or Hispanic	3	11.5
	Not Latino or Hispanic	23	88.5
Current position	Advanced practice nurse	6	23.1
	Clinic registered nurse	8	30.8
	Physician (MD or DO)	12	46.1
Specialty within pediatric oncology	Neuro-oncology	7	26.9
	Non-neuro solid tumor	14	53.9
	Other	5	46.2
Years of hospital experience in pediatric oncology specialty	Less than 1 year	1	3.8
	1-5 years	6	23.1
	5-10 years	2	7.7
	Over 10 years	17	65.4
Previous palliative care communication training?	Yes	12	46.1
	No	14	53.8

Quantitative survey responses were very favorable overall, with a median score of at least 4 out of 5 for all questions and ≥ 70% of participants rating all questions at least a 4 out of 5. (Table 3). Eight of 9 survey participants thought in-person training was worth the time and effort since it allowed for dedicated time and space, bonding of the participants, and facilitated CST practice with simulated patients.

Table 3.

Post-training survey: quantitative data

Topic	Median (IQR) ratinga	Percentage of respondents that rated category ≥ 4a
Overall value and quality of training	5 (4-5)	100%
Facilitator quality	5 (4-5)	96%
Adaptation of training to clinical environment	5 (4-5)	96%
Interprofessional education	4.5 (4-5)	96%
Value of VitalTalk skills (eg, ask-tell-ask, I wish/I worry, NURSE)	5 (4-5)	93%
Value of program for development of PC/EOL communication skills	4 (4-5)	92%
Value of adapted REMAPS guide	4.5 (4-5)	92%
Value of training as a dyad	5 (4.25-5)	92%
Value of Diagram I (“ As A Team”)	4.5 (4-5)	88%
Value of Diagram II (“Experiences of Other Families”)	5 (4.25-5)	92%
Value and quality of role play	5 (4-5)	88%
Quality of power point presentations	4 (4-5)	77%
Quality of written materials	4 (4-5)	81%
Quality of videos	4 (4-5)	89%
Booster training	4 (3-5)	71%

NURSE, naming, understanding, respecting, supporting, exploring; PC/EOL, palliative care/ end-of life; REMAPS, rapport/review/reframe, expect emotion, mapping/meaning, align goals, plan, synopsis/summary

^a1-5 scale.

Ninety-six percent of respondents reported learning something new during training. Open-ended comments revealed new information learned: how to have difficult conversations; VitalTalk phrases for use during difficult conversations; the helpfulness of both observing and participating in role-play to improve communication skills; importance of IP care and how to work effectively in an IP dyad; and the usefulness of Diagrams I and II during difficult conversations, especially Diagram II. The usefulness of the visual aids was the most cited category of new learning, noted by 7 (27%) participants. Comments regarding new information learned are shown in Figure 3.

Figure 3.

Quotes regarding newly learned information.

Participants who trained online were asked to comment on their experience. The overall theme that emerged from these comments was that virtual training was adequate towards meeting the goal of improving palliative care communication skills. This was particularly true for clinicians that were conducting virtual visits at their sites. For example, one participant stated, “As we have implemented video visits in true clinical practice, I do not feel the training with mock patients in this venue was hindered.”

Six of 17 virtual participants (35.3%) thought that in-person training would have been better. Reasons cited for this included: greater ability to engage in nonverbal communication, in-person training would have felt more realistic, and in-person training provides increased interaction among participants. Participants reported on the benefits of avoiding travel (ie, saving time and money). A suggestion for improving virtual training was to have all of our trained actors in 1 Zoom room (window).

Participants were given free-text space to provide general course feedback. The themes of responses were that the overall format and tools were highly valuable, and the 3-day training time frame was appropriate. Mirroring the quantitative data, participants mostly found role-play with actors to be beneficial for honing communication skills and allowing for a safe space to practice CST. Some clinicians asked for more role-play; however, 2 clinicians expressed a general dislike for role-play with simulated patients. Quotes regarding role-play are shown in Figure 4.

Figure 4.

Quotes regarding role play.

The majority (95.6%) of clinicians were committed to making changes in their practice after completing our training. Specifically, the learners identified active listening, expressing empathy, being curious, identifying patients’ broad goals, and using silence as the specific skills they could incorporate into their practice. Sample quotes regarding practice changes are shown in Figure 5.

Figure 5.

Quotes regarding practice changes.

As of March 2024, 26 (85%) trained clinicians have delivered 94 audio-recorded PC/EOL communication interventions to the parent(s) of 42 children with a poor cancer prognosis on our IMPACT study. The median self-assessed fidelity of completed protocol-communication tasks is 90% with a range from 65 to 100%. Dyads trained virtually had similar median fidelity to those trained in person (95% and 90%, respectively).

Discussion

In this report, we describe post-training evaluation results of pediatric oncology clinicians that were trained to deliver PC/EOL communication intervention to parents of children with a poor cancer prognosis. We incorporated published recommendations for CST for pediatric oncologists and RNs/APPs for having PC/EOL discussions with parents of children with a poor-prognosis brain tumor (ie, use of trained actors, IP education, 3-day training),¹⁹ VitalTalk teaching methods,²⁰ and visual aids that we created to facilitate shared decision-making.^1,12 The resulting IP PC/EOL course was well received, was highly rated for quality and value, and included all key recommendations from the 2018 American Society for Clinical Oncology consensus guidelines on patient-clinician communication (incorporation of validated techniques; supervised skills practice; real-time feedback; exercises that enhance empathy; increase self-awareness and situational awareness related to emotions, attitudes, and beliefs; and use of trained facilitators).²¹ A notable finding was that even learners with significant years of pediatric oncology experience expressed gaining new knowledge and acquiring new skills (utility of visual aids; how to hold difficult PC/EOL conversations, and IP team delivery). Our learners were highly committed to incorporate new skills and knowledge into their practice. These findings (high value ratings, improved learner confidence, skills, and motivation for change) are consistent with other PC/EOL CST courses for adult primary care and subspecialty physicians and nurses.²⁰

After completing our training course, nearly all participants had an opportunity to apply new skills with parents and achieve acceptable intervention-fidelity ratings. The visual aids were reported as particularly valuable features of the intervention as they helped to frame and structure the conversation. Another unique aspect of our approach was training our clinicians in IP dyads. It is possible that by training dyads to use the communication plan, clinicians felt more secure in these conversations as their partner was there to assist if one of them had a loss for words or needed help supporting the parents emotionally.

While we intended for this training to occur in person, the COVID-19 pandemic required us to convert our training program to an alternative virtual format for 65% of participants. Although the virtual format did not allow participant interaction to the same degree as the in-person format, it was effective in its aim to train the learners in using the communication plan successfully. The virtual format further allows for a potential large-scale implementation going forward. Despite the need for a considerable time investment, the participants thought the course was worth the time and effort and would recommend it to their colleagues. These findings are consistent with results from a systematic review of CST courses in pediatric oncology, which reported uniformly positive endorsements by the participants.²²

Conclusion

This report presents a detailed description of a highly rated pediatric oncology IP PC/EOL CST that was successfully adapted to a virtual environment. Currently, we are collecting outcomes on children and parents receiving the communication intervention compared to an attention-control group in the IMPACT study. If the children show improved quality of life at end of life and parents have more hope and less distress through their receipt of the intervention, we will develop an implementation grant to broadly disseminate this training to pediatric oncology clinicians nationwide.

Data Availability Statement:

In accordance with institutional policy, raw data will not be made publicly available.