Institute of Medicine—IOM¹¹	Interprofessional Education Consortium—IPEC¹²
Provide patient-centered care	Family-centered practice
Work in interdisciplinary teams Employ evidence-based practice Apply quality improvement Use informatics	Integrated services through collaboration and/or group process
	Assessment and outcome
	Social policy issues
	Communication
	Leadership

There is a mantra in palliative care circles that interdisciplinary teamwork and learning are beneficial. However, the supporting research and literature is limited, and where available, remains controversial. A review of the general and academic literature on interdisciplinary education identifies some of the salient qualities, benefits, and challenges ⁴ (Table 11-2).

TABLE 11-2 Interdisciplinary Education: Benefits and Challenges

Benefits	Challenges and/or disadvantages
• Generally well received

• Variation by individual teacher and learner, compounds the challenge of also being from different disciplines

• Enables learning the necessary knowledge/skills for collaborative work

• Attitudes and perceptions remain less impacted than knowledge and/or skills

• Every learner embodies values reflective of themselves and others

• Faculty development is necessary for effective education and can be a challenge to deliver ¹⁴

• All participants access core content components at the same time

• Discipline-specific content requires additional allocation of time, space, and educators

• Teaching that genuinely reflects practice is effective

• There can be a disconnect between what is taught and what is practiced

• Education can be a quality improvement measure, resulting in practice/service enhancement

• The physical and temporal hurdles involving space and coordination of varied schedules ¹⁵

• Participant quotes:

“I cannot imagine working again without the interdisciplinary team.”

“I will feel naked without the team members.”¹³

• The necessary component of involving participants to learn from one another in social as well as academic situations can present a challenge

The Pedagogy of Pediatric Palliative Care

Unique dynamics of pediatric palliative care

The unique dynamics of pediatric palliative care compound the challenges of educating clinicians of different disciplines and varied expertise levels. These cognitive and emotional complexities include:

• The life-threatening and life-limiting illnesses facing infants and children vary widely compared to illnesses impacting adults receiving palliative care. The adult population is far less heterogeneous: cancer and chronic cardio-respiratory illnesses are the usual conditions for adult recipients of palliative care. The illnesses that cause children to be very ill are frequently rare with poorly documented symptoms and an uncertain prognosis.

• Comprehensive assessment of pain and non-pain symptoms in the pediatric population is a challenge because of the spectrum of developmental capacity and frequent inability to self-report.

• Clinicians prescribe medications for pain and symptom relief in the pediatric population with inadequate or even absent pharmacokinetic and pharmacodynamic evidence.

• The care of infants and children have cure as a notable focus, often even when accompanied by compromise of quality for their remaining lives.

• Clinicians share that the emotional impact of caring for a critically ill child is experienced as exponentially greater compared to caring for an adult.

Core Curriculum

Although communication is listed equally among the components below, enhanced communication with patients, families, and colleagues is a priority and an intrinsic part of all the topics. Pediatric residents wished for “aspects of communication” as 4/5 of their top choices for additional education.⁵ Core educational components include:

• Needs assessment of participants

• An overview of pediatric palliative care (demographics, philosophy)

• How to conduct a psychosocial assessment of patient and family

• Developmental considerations of children

• Comprehensive pain assessment

• Understanding pain pathophysiology

• Basic and complex pain management

• How to relieve nausea, vomiting, anorexia, fatigue, breathlessness, excess secretions, bleeding, depression, anxiety, delirium, disturbed sleep, seizures, spasticity, etc.

• Spiritual assessment and care of the patient

• Communication with children and their parents

• How to discuss tissue and organ donation and autopsy

• Ethical considerations

• Consideration and integration of ethnic and cultural perspectives

• Enhancing interdisciplinary team communication and collaboration

• Anticipatory grief and bereavement

• How to perform reflective practice, including self-care

• Finding and using resources

• Performing evaluation and feedback

Team interdisciplinary education and training

A dynamic mix of clinicians, from different disciplines and with varied skills, requires training in pediatric palliative care (Fig. 11-1).

Fig. 11-1 Patterns of skill acquisition in clinicians training in pediatric palliative care.

Interdisciplinary groups provide an opportunity to share information from each individual and discipline’s perspective. Because each discipline has unique educational preparation, philosophy, and standard of practice, a common forum lends a richness and diversity to the group’s knowledge. Furthermore, it fosters respect and appreciation for each individual’s contribution. Research suggests that the earlier students from different disciplines are paired, the better their perceived understanding of roles.¹⁶ Medical student participants shared what they perceived as institutional support or the lack thereof in interprofessional interventions.¹⁷ Both within and outside the formal teaching session, the frequent and ongoing modeling of interdisciplinary practice must be considered in curricula implementation.^18,¹⁹ The evaluation of these initiatives is also crucial because trainees’ perceptions of the importance of educational material is strongly linked to such data.²⁰

It is helpful to plan the curriculum according to the skills to be imparted and acquired, rather than by discipline-specific teaching. Although each interdisciplinary team member has a particular scope of practice, a common knowledge base is often required. For example, consider a clinician who enters a room where the child appears to be in pain. The mother expresses concern about her child’s discomfort and about how analgesia may affect him. Every attending nurse, physician, or psychosocial clinician coming into contact with the child and family should have the basic skills to address the child’s pain and provide reassurance to the child and family.

Emerging research identifies the educational needs of the support staff on the pediatric palliative care team. A recent study pointed out that professional, educational, and emotional needs were notably unmet in this heterogeneous community of care providers. Although they had significant and direct contact with dying children and their families, none of them had received training in coping strategies and grief.²¹

Informal focus groups of trainees in pediatric palliative care rated respect of one another’s disciplines as the most important outcome of an interdisciplinary educational initiative.¹³ An integral component described by Health Canada is the development of mutual understanding for the contributions of various disciplines.¹⁸ In this emotionally difficult field, such respect may help prevent and reduce staff distress, communication obstacles, and conflict. Furthermore, the sharing of experiences and perceptions across disciplines leads to the recognition of universal reactions and emotions. An Australian interdisciplinary education palliative care model involved 537 participants, whose feedback requested more group sharing.²² Pediatric hematology-oncology and critical-care physicians noted that observing senior physicians in difficult conversations with families was the most helpful aspect of their palliative care training.¹⁴ It bodes well for interdisciplinary education that respondents also requested that team members from disciplines other than medicine be involved in teaching of communication skills.

Clinicians from each discipline bring their own perspectives and share unique interactions with patients and families, resulting in significant clinical learning among team members. One individual or discipline cannot be an expert in every component of care; rather a collective team expertise is necessary.

Setting the stage for a level playing field within the group is essential within interdisiplinary education. For example, although nurses are often the most numerous of the participants, their input may be dismissed if there is a real or imagined power differential between them and the physicians present. On the other hand, the number of nurses may intimidate individuals from less well-represented disciplines. A study evaluating interdisciplinary workshops found that male participants and physicians tended to take over in role play and discussion formats.²³

Strategies

Despite the challenges in providing educational opportunities for an audience of diverse disciplines, there can be significant rewards. Advance knowledge about the audience and its learning goals ensures a targeted presentation. It is incumbent upon the educator or facilitator to create an environment that supports sharing ideas without judgment. A stated common goal or focus engages participants from all disciplines. Introductions that highlight each person’s discipline and contribution facilitate the understanding of different perspectives and meaning of others’ life work. With this groundwork, individual concerns during the training can be better addressed and are less likely to be discounted. Throughout the session, it is important to pose questions that relate these different perspectives to the common focus.

• Describe an ideal scenario of caring for a palliative care patient. This demonstrates the contributions and priorities of the many disciplines.

• Tell us about your team. How do you work together? What has worked well for your team in the past?

• Do you have a well-defined structure to your team? Do you have well-defined roles within your team?

• How does each person on your team contribute to the care of a patient? This can be explored through a patient-based discussion.

• What do you see as your team’s strengths in caring for a pediatric palliative care patient?

• Have team members ever taken on different duties? Describe those situations, how did it work, were there any surprises?

• Would you change how you work together?

• Small group discussions can be very effective when participants from different disciplines are distributed within each group. Strategies to foster interaction include:

• Each person describes the discipline-specific contribution of each team member, as well as the contributions that might be shared by all team members. A variation is to provide descriptions of specific practices and ask participants to match the practice with the team member/discipline.

• Each participant describes what is needed to care for a child in pediatric palliative care. A flip chart can be used to graphically identify which discipline could perform each role. This encourages thinking in broader terms than how their teams may currently function.

• Ask participants to describe what is most rewarding and most difficult about one’s work in pediatric palliative care in regards to their specific discipline. A blackboard or flipchart may be used to document the responses. Ask which discipline experiences each item, there will likely be considerable overlap.

It is often the informal opportunities to learn within the interdisciplinary team that yield the richest treasures. Each observation or piece of information shared from one individual frequently reminds another person of further details about the patient and/or family. Teleconferencing sessions that connect the tertiary care center with remote sites provides a valuable mutual learning opportunity.

There are differences in approach depending on the kind of education and training being offered: is this a general session about palliative care that is focused on one particular component, or is it specific to the needs of a particular patient and family? Providing information that is ready when it’s needed is more likely to be heard, integrated, and remembered when illustrated by relevant examples from patients and families. Web-based resources can provide practical material by those with pediatric palliative care expertise. List-servs are excellent venues to vet questions, teach difficult aspects of care and share educational tools, and share policies with the collective expertise of clinicians from a variety of disciplines.

Parents and families as teachers

Listen. Just listen and just dig deeply what they’re saying… That’s the kind of doctor to be. Not just a doctor that understands big words—doctor talk—whatever….Because they got to meet all kinds… like me. They got to understand me… I’m the one here with my child. I could read her face… You got to listen to what I’m saying about my child.

— INITIATIVE FOR PEDIATRIC PALLIATIVE CARE

The eloquence of stories recounted by parents and families has enormous impact on professional training and development, as attested to by the clinicians themselves. Hospitals have begun including family members in new resident orientation, grand rounds presentations, and advisory councils. Palliative care programs and hospices are creating novel ways to involve families in educational initiatives, institutional trainings, and conferences. Some curricula are also encouraging clinicians to involve family members in institutional change.

The core of pediatric palliative care is the relationship between the clinical team and the family. The involvement of the child and family in ongoing professional development may enhance that relationship. Family members have described the importance of continuous care coordinated through the efforts of an interdisciplinary team.²⁴ It is possible to train clinicians to be effective members of this team. Family members, including the child, can be interviewed or play roles in vignettes. Some programs have used innovative techniques such as developing scripts based on real situations with input from families. Actors then play the role of the patient or family with the clinicians acting as themselves.²⁵ Clinicians may gain a deeper understanding of parents’ decision-making processes upon hearing their accounts firsthand.²⁶ The teaching provided by families provides a unique perspective, and the team should be advised to heed carefully what they hear, and consider these messages in the evolution of their own practice.

Clinicians are responsible for protecting the emotional integrity of families who participate in educational initiatives. Careful selection of individuals, as well as the identification of a clinical team member who is available for support and follow-up to the family, are essential.

The “Voice of the Child” as Teacher

The following drawing and description by Mikaela, a ten-year-old girl with a brain tumor, provides an example of teaching from the child’s images and words, as well as valuable insight into the child’s understanding of illness, capacity, decision-making and autonomy (Fig. 11-2). Mikaela shows her picture about cancer-related treatment decisions, and says “I feel like I’m stuck in the middle of a doughnut”²⁷not knowing which option to choose. As described by her psychologist, Mikaela drew tumor cells on one side and a lumbar puncture needle on the other.²⁷

Fig. 11-2 This or this.

(Reprinted from Sourkes B et al. Food, toys, and love: Pediatric Palliative Care, Curr Probl Pediatr Adolesc Health Care 35(9): 345-392, 2005.)

Mikaela describes her picture to her psychologist by saying: “What I mean by ‘I was stuck in a doughnut’ is that I had two choices and I didn’t want to take either of them. One of the choices was to get needles and pokes and all that stuff and make the tumor go away … even perhaps, it might have came back. My other choice was letting my tumor get bigger and bigger and I would just go away up to heaven. … My mom wanted me to get needles and pokes. But I felt like I just had too much. Too much for my body, too much for me. … so I kind of wanted to go up to heaven that time. … But then I thought about how much my whole entire family would miss me and so just then I was kind of like stuck in a doughnut.”²⁷

Prompts for discussion include:

Can you share some of your thoughts after hearing from Mikaela?

Do you think Mikaela understands the implications of her illness?

Do you think Mikaela understands the decisions related to her illness?

What are your thoughts about capacity? Do you think Mikaela has capacity?

Do you think Mikaela is able to decide about the treatment of her illness?

What are your thoughts about patient autonomy when you hear Mikaela talk about her family?

Integration of the medical humanities

Medical humanities have long been used to enhance the education of healthcare professionals. Consider the mission statement from the Medical Humanities program at New York University School of Medicine:

“We define the term ‘medical humanities’ broadly to include an interdisciplinary field of humanities (literature, philosophy, ethics, history, and religion), social science (anthropology, cultural studies, psychology, sociology), and the arts (literature, theater, film, and visual arts) and their application to medical education and practice. The humanities and arts provide insight into the human condition, suffering, personhood, our responsibility to each other, and offer a historical perspective on medical practice. Attention to literature and the arts helps to develop and nurture skills of observation, analysis, empathy, and self-reflection—skills that are essential for humane medical care. The social sciences help us to understand how bioscience and medicine take place within cultural and social contexts and how culture interacts with the individual experience of illness and the way medicine is practiced.”¹⁸

The incorporation of the arts to illustrate a concept, a child’s or parent’s perspective, or a staff member’s reflection on the personal impact of a professional experience, is invaluable. The performing arts are particularly excellent vehicles for illustration when followed by discussion opportunities.

Family stories that are shared publically may be effectively incorporated as interdisciplinary teaching tools. For example, newspaper journalist Ian Brown chronicles his experience of parenting Walker, his 12-year-old son with a complex chronic illness,²⁹ in The Boy in the Moon.

One of his reflections, reprinted from the Globe and Mail, could be incorporated into a curriculum about the issues that face these children and their families:

I took my 14-year-old daughter, Hayley, to the ballet. She’s a dancer herself; it’s my favourite evening out—I wear a bow tie and she wears a dress. Jerome Robbins had choreographed music by Philip Glass: row after row of evenly spaced dancers, pacing across the stage in identical time to Mr. Glass’s rhythmic score. Only an occasional couple broke step to perform a pas de deux. A ballet about the life of a great city, in other words, with its armies of people doing the same things in the same impersonal place to the same rhythms—save when they break away from the pack and just as quickly slip back into position. A work of art that lets you see the crisp shape of your own existence, even while you are immersed in your repetitive, blinkered life. A generous, hopeful gesture. It brought thick tears to my eyes. Walker makes people cry too. It can happen any time and to almost everyone who meets him, eventually. They aren’t tears of loss, or pity. I think they’re tears of gratitude.

Evaluative tools

Some components of a pediatric palliative care curriculum are best shared in an interdisciplinary format; others require a more discipline-specific focus. Interdisciplinary groups will vary appropriate to community need, funding, service provision, and goals for training. Several palliative care organizations have defined hospice and palliative care competencies specifically for medicine, nursing, and social work. Delineation of such competencies provides a framework for evaluating quality indicators and best practice interventions. Some to consider:

• The American Academy of Hospice and Palliative Medicine (AAHPM) Task Force has identified competencies for physicians (www.aahpm.org).

• The American Association of Nursing Colleges developed an End-of-Life Nursing Education Consortium (ELNEC) with a Pediatric component (www.aacn.nche.edu/ELNEC). In Canada, competencies for palliative care, includimg pediatrics, have been developed for nurses and national certification in palliative care under the auspices of the Canadian Nurses Association (CNA).

• Social work competencies in end-of-life care with links to the published literature are available at: www.socialworkers. org/research/naswResearch/EndofLifeCare/default.asp

Pharmacy, child life, psychology, and occupational and physiotherapy disciplines are integral to interdisciplinary education; however, competencies in pediatric palliative care have not yet been developed.

In addition to discipline-specific competency evaluation, researchers of pedagogy have some tools to evaluate interdisciplinary education. However, little is published relating to palliative care, and even less that is specific to pediatric palliative care. For example, although the Readiness for Interprofessional Learning Scale (RIPLS) is available, it has not yet been applied to palliative care-related education.³⁰ However, some tools can be extrapolated and modified. For example, medical and social work students who received interdisciplinary education demonstrated a significantly better ability to lead family conferences in palliative care than the control group.³¹

Clinical Vignette

The following narrative of Riley elucidates the comprehensive care that a competent palliative care team can provide. This narrative may be used to expand participants’ perceptions of who the recipients of care are, as well as timelines for involvement. Ideally, referrals for pediatric palliative care should match the demographics of childhood illnesses that are significantly life threatening: that is, one-third from oncology, and the balance varied with neurologic, cardiac, renal, and gastro-intestinal diagnoses as the primary condition. Participants may be encouraged to share their experiences through examples from their own practices.

The Pediatric Palliative Care Service was consulted when Riley was 41/2 months old (Fig. 11-3). He had been awaiting a neurologic consultation for hypotonia when he was admitted with pneumonia and severe respiratory compromise. He was diagnosed with Spinal Muscular Atrophy, a progressive, life-threatening, neurodegenerative illness. The following quotes are taken from a note written to members of the palliative care team, following Riley’s death at 14 months of age. Riley’s parents wrote: “We are so thankful for all the time you spent with us when Riley was diagnosed. Those hours you spent with us engaging us in productive, honest conversation were very positive for us. It helped us frame our hopes and wishes for Riley; how far we’d go with his care and his end of life care. Without our conversations I’m afraid we would have avoided thinking about those ‘hard’ things until we were in a critical, emotional time. I’m sure those decisions would have been much harder and not always thought through at those times.”