7 Interdisciplinary Education and Training
Katharine E. Brock, Jennifer Hwang, Marsha Joselow, Blyth Lord, Janet Duncan, and Deborah A. Lafond
There is only one way to see things until someone shows us how to look at them with different eyes.
pablo picasso
Interdisciplinary Education and Training
Language
In the literature, online collaboratives, curriculum repositories, evaluation tools, and fellowship training programs, two terms are used: “interdisciplinary” and “interprofessional.” These are often used interchangeably, with interdisciplinary the preferred convention for referring to two or more disciplines in pediatric palliative care, and interprofessional more common in education, evaluation methods, teamwork, and policy literature. For the purpose of this chapter, we will use the term “interdisciplinary” except when “interprofessional” is included as a formal title, policy, survey assessment tool, or direct quote.
Principles of Adult Education
Much of the day-to-day learning in the healthcare environment happens organically in the process of caring for children and their families. That said, it is valuable to think about the educational principles that can make this experience most successful, whether the learning environment is the ward, clinic, or classroom. The experiential learning of clinical training in all disciplines can be described through the work of David Kolb.1,2
Kolb described a cycle in which a learner has an experience. The experience leads to reflection. The reflection leads to formulation of abstract concepts and congruent generalizations. These concepts and generalizations are then applied during a new situation which permits learners to test their new understanding. This testing in another clinical encounter is followed by another cycle of reflection, abstraction/generalization, and application which perpetuates the cycle.1,2
Palliative care providers will recognize that this cycle plays out in their own clinical practice multiple times per day. Every patient we meet generates reflection on the part of a palliative care provider (e.g., Why is the patient’s pain refractory to opioids?). This leads to a formulation of concepts and generalizations (Perhaps the pain is a manifestation of non-physical factors?). In the next clinical encounter, this hypothesis leads to additional exploration which unveils additional information (i.e., the patient also has deep spiritual and psychological stressors).
Beyond recognizing the constant cycles of experiential learning in clinical training and practice, considerable work has been done over the past 30 years to characterize adult learning or andragogy. Initially described by Malcolm Knowles and adapted and refined by many others, adult learners are described as having six unique needs for learning.3
1. Adults need to understand why they need to know something.
2. Adults have knowledge of how they learn and need flexibility to learn in their own way.
When learners seek out palliative care training, their justification often reveals Knowles’s principles of andragogy. They have had experiences or anticipate experiences in patients with refractory symptoms, complex communication, or care for patients with life-limiting illnesses which motivate them to seek additional knowledge and skills. There is no learner more motivated than practitioners who anticipate they will need knowledge they do not possess during their upcoming clinical shift. The just-in-time training provided by palliative care teams to primary teams every day reflects this reality. Similarly, learners who seek additional training through lectures, seminars, conferences, clinical rotations, or advanced fellowship typically come to these experiences with personal life experiences and motivations that define the lens through which they view palliative care education.
Principles of Interdisciplinary Education
Interdisciplinary Versus Multidisciplinary
The World Health Organization (WHO) defines palliative care for children as “the active total care of the child’s body, mind and spirit, and also defines giving support to the family.”4 This charge to care for body, mind, spirit, and family, by definition, requires an interdisciplinary team. While multidisciplinary teams are created simply by putting health professionals with different professional backgrounds together to care for the same patient, interdisciplinary teams are defined by the collaboration over time of health professionals with different professional backgrounds to care for the patient (see Figure 7.1).5 Body, mind, spirit, and family are integrated in the patient and thus require the integrated and collaborative practice of an interdisciplinary team.
Reprinted with permission from Rabinowitz E, et al. Finding strengths in our differences: How interprofessional training prepares clinicians for collaborative practice (SA507). J Pain Symptom Manag. 2019;57(2):444–445.83
Team leadership is another place where multidisciplinary and interdisciplinary teams often differ. Multidisciplinary teams tend to have a single leader who gathers input from team members prior to making a decision. Interdisciplinary teams have more fluid leadership in which all members may lead the team in the care of specific children and their families based on the needs of the patient and the unique skills of each team member. Multidisciplinary teams have a clear “head of the table” whereas interdisciplinary teams sit at a round table where leadership may come from any team member and may even change between different members of the interdisciplinary team depending on the unique needs of the patient, family, and/or clinical situation.
Interdisciplinary team practice is a learned skill that has only recently gained attention in the education of medical professionals. Much of the focus has been on interdisciplinary education during training in recognition that these skills are easier to cultivate in novice learners. According to the WHO, interprofessional education (IPE) is an experience that “occurs when students from two or more professions learn about, from, and with each other” (see Figure 7.2).6
Reprinted with permission from World Health Organization (WHO), Framework for Action on Interprofessional Education & Collaborative Practice. WHO; 2010. https://www.who.int/hrh/resources/framework_action/en/
Experiential learning, either in simulated settings or direct patient care, is the primary element of interdisciplinary education. Thibault explains experiential learning as students entering a practice environment to gain understanding in how to work collaboratively in “real-life” situations. Thibault also highlighted that true interdisciplinary education “requires purposeful integration and collaboration among the disciplines.”7
Unique Dynamics of Pediatric Palliative Care
Pediatric palliative care (PPC) presents unique challenges in educating clinicians from different disciplines and varied levels of experience. Some of these unique dynamics to be considered include
• Children have a wide variety of serious, often chronic, medical conditions that are amenable to integration of palliative care.8,9 In the adult population, cancer and chronic cardiorespiratory illnesses are common entry points for palliative care.10,11
• The trajectory of serious illness in pediatrics may be over years, while the average length of enrollment for adults in hospice is just 76.1 days.12
• PPC crosses developmental stages, from perinatal to young adults, contributing to challenges in assessment. Self-report measures for pain and nonpain symptoms often cannot be used or may not be appropriate.10,11
• Pediatric care is often cure- or disease-directed, even when quality of life may be compromised. Children have increased use of medical technology, as compared to adults, often under the provision of concurrent care.13
When designing and implementing interdisciplinary education and training, one must consider these unique challenges so that care can be provided by clinicians who can implement an appropriate plan.
Pediatric Competencies, Curricular Milestones, and Entrustable Professional Activities
When hospice and palliative medicine became an official medical subspecialty in 2006, a group of clinician-educators was asked to create a list of competency-based outcomes for fellowship training by the Accreditation Council of Graduate Medical Education (ACGME). These competencies were to inform the Next Accreditation System of the ACGME, which uses competency-based outcomes to assess trainees. These competencies did not take into account the unique needs of PPC and so a new list of pediatric competencies was developed based on the original competencies document (http://aahpm.org/competencies/ped-competencies).14
In 2014, the American Academy of Hospice and Palliative Medicine (AAHPM) brought together a group of hospice and palliative medicine (HPM) fellowship directors to create the Entrustable Professional Activities that define the work of a hospice and palliative care physician (http://aahpm.org/uploads/HPM_EPAs_Final_110315.pdf). Entrustable Professional Activities (EPAs) define the key tasks of a subspecialty and require a combination of knowledge, skills, and attitudes.15 This group went on to create Curricular Milestones to help program directors organize curriculum and create a standard for what should be taught as part of an HPM medical fellowship (http://aahpm.org/uploads/HPM_Curricular_Milestones.pdf).16 Both the EPAs and the Curricular Milestones were designed to address the comprehensive needs of both pediatric and adult hospice and palliative care patients across the life span. Finally, Reporting Milestones were created as a tool to provide semi-annual feedback to the ACGME about the developmental skill acquisition of fellows over the course of their fellowship.
Competencies, EPAs, and milestones all evolved from the ACGMEs transition to a competency-based model of accreditation. While the ACGME is specifically focused on postgraduate medical training, these documents still offer guidance for the nonphysician members of an interdisciplinary team. As previously described in this chapter, the day-to-day clinical roles of nurse practitioners and physicians often are very similar. This means that these documents can offer guidance in the training of advanced practice providers.
Team Interdisciplinary Education and Training
Clinicians in PPC must develop an exemplary individual toolkit of knowledge and skills in caring for pediatric patients with serious illness and their family, yet the highest quality of care is best provided by an interdisciplinary team to address all domains of suffering: physical, psychosocial, spiritual, and environmental. Education of interdisciplinary teams may take several approaches to foster the development of knowledge, attitudes, and skills in PPC. Formal education methods, such as didactic lectures, serve as a basis of knowledge acquisition. Simulation provides practice and adoption of skill-based learning. Mentoring serves as a path for attitude change. Use of these strategies is a catalyst for team interdisciplinary education and training.17,18
Strategies
Knowledge
Team knowledge is often based on didactic learning in either in person or online education through programs such as the End-of-Life Nursing Education Curriculum–Pediatrics (ELNEC-PPC), Education in Palliative and End-of-Life Care–Pediatrics (EPEC-Peds), Palliative Care Education and Practice-Pediatric Track (PCEP-Peds), Pediatric Pain Master Class, concurrent and preconference sessions at the American Academy of Hospice and Palliative Medicine/Hospice and Palliative Care Nurses Association Annual Assembly (AAHPM/HPNA), the Center to Advance Palliative Care (CAPC) and the National Hospice and Palliative Care Organization (NHPCO), International Children’s Palliative Care Network (ICPCN), various state coalition webinars, and other local, regional, and national conferences (Table 7.1). Appropriate for individual learning, these offerings encourage team participation and cooperative group learning.
Table 7.1 Sample of pediatric palliative care interdisciplinary education opportunities
Name of program | Description | Website |
American Association of Hospice and Palliative Medicine/ Hospice and Palliative Nurses Association Annual Assembly | This annual convening of palliative and hospice care professionals from across all disciplines offers a wide variety of educational and interactive opportunities addressing the state of the science in caring for children, adolescents, and adults with serious, advanced illness. Pediatric specific sessions are available. | http://apps.aahpm.org/meeting?productid=30925426 |
California State University Shiley Institute for Palliative Care Certificate program | The Shiley Institute for Palliative Care at California State University offers both a certificate in pediatric palliative care for physicians, advanced practice nurses, physician assistants, and registered nurses, as well as a multidisciplinary certificate for social workers, chaplains, and other providers. The programs are comprised of self-paced, online modules which can be purchased individually for continuing education or in total for the certificate. | https://csupalliativecare.org/programs/pediatrics/ |
Canadian Network for Palliative Care for Children | This network offers a variety of online and certificate learning programs for healthcare professionals. | https://www.chpca.net/professionals/canadian-network-of-palliative-care-for-children.aspx |
Center to Advance Palliative Care (CAPC) | A variety of resources are available to CAPC members. CAPC sponsors Palliative Care Leadership Centers (PCLC) for specialized training and mentorship, including pediatric Centers of Excellence. | https://www.capc.org/palliative-care-leadership-centers/ |
Children’s Hospice International | Children’s Hospice International has multiple publications available to purchase that address pediatric palliative and hospice care, including Interdisciplinary Clinical Manual for Pediatric Hospice and Palliative Care, Home Care for Seriously Ill Children: A Manual for Parents, and the ChiPACC Implementation Manual. | Http://www.chionline.org/helpful-resources/ |
Cure4Kids – Sponsored by St. Jude’s Children’s Research Hospital | Cure4Kids is an online resource for healthcare professionals dedicated to enhancing the care of children who have cancer and other life-threatening diseases in countries around the globe. Cure4Kids offers online education and collaboration tools that are freely available to registered users. | https://www.cure4kids.org/ |
Education in Palliative and End of Life Care – Pediatrics (EPEC- Pediatrics) | EPEC–Pediatrics is a comprehensive adaptation of the EPEC curriculum designed to address the needs of children, their families, and pediatric oncology providers and other pediatric clinicians. It was developed by and continues to receive input from experts in several pediatric disciplines as well as parent advocate advisors. It consists of 24 modules in pain and symptom management in palliative care. These topics are taught as a combination of 20 distance learning modules and 6 in-person conference sessions. This in-person conference is offered annually.93 | https://www.bioethics.northwestern.edu/programs/epec/curricula/pediatrics.html |
End of Life Nursing Education Curriculum Pediatric Palliative Care (ELNEC- PPC) | ELNEC–Pediatric Palliative Care was designed and developed by 20 pediatric palliative care experts and piloted in 2003. Each year, at least three national train-the-trainer pediatric palliative care courses are offered across the US. The curriculum also includes perinatal and neonatal content. Originally designed by and targeted to nurses, these courses are appropriate for and encourage interdisciplinary education and collaboration. | https://www.aacnnursing.org/ELNEC/About/ELNEC-Curricula |
International Children’s Palliative Care Network (ICPCN) | ICPCN has an online e-learning platform with multiple courses helpful for professional and lay people working with children who have serious illness. Courses are available in multiple languages. The courses have both a theoretical and clinical component. | http://www.icpcn.org/icpcns-elearning-programme/ |
National Hospice and Palliative Care (NHPCO) | NHPCO has a variety of educational materials, including the ChiPPS e-journal. This quarterly electronic journal is available free of charge with registration. Other NHPCO free pediatric resources include information on concurrent care and pediatric standards of practice. Additional resources are available with NHPCO membership. | https://www.nhpco.org/palliative-care-overview/pediatric-palliative-and-hospice-care/chipps-pediatric-e-journal |
Palliative Care Education and Practice (PCEP) | A comprehensive course delivered in two parts on an adult or pediatric track. PCEP provides physicians, nurses, and social workers a structure in which to efficiently acquire the competencies necessary to influence our current changing healthcare environment. Held in two parts, this course uses experiential learning, training, and consolidation. | https://pallcare.hms.harvard.edu/courses |
Pediatric Pain Master Class | The Pediatric Pain Master Class offers state of the art education in pain management for the pediatric patient from a holistic and interdisciplinary perspective. The program covers pharmacological, medical, psychosocial, and integrative therapies in the management of children’s acute, procedural, and complex/chronic pain. The Master Class is primarily designed for physicians and advanced practice nurses to develop their expertise in the field of pediatric pain medicine in a highly interactive seminar format. This course is also open to other individuals who work within the field of pediatric pain. | https://www.childrensmn.org/events/12th-annual-pediatric-pain-master-class/ |
Together for Short Lives | Developed in the United Kingdom, this organizational website has resources for health care professionals and families. Care pathways are available. | https://www.togetherforshortlives.org.uk/ |
University of Washington Graduate Certificate in Palliative Care – Pediatric Track | The University of Washington offers a graduate certificate in palliative care, including a pediatric track. This interdisciplinary curriculum is designed for practicing healthcare professionals from nursing, medicine, social work, spiritual care, and other disciplines. seeking specialty training in palliative care. The 9-month graduate certificate includes three 5-credit courses taken sequentially in the Autumn, Winter, and Spring quarters. This is a hybrid program with both in-person and online learning. | http://uwpctc.org/ |
VitalTalk | This interdisciplinary, evidence-based, communications training utilizes an engaging curriculum available at in-person and online courses, as well as providing a variety of clinician resources available online and in the Vital Talk app. Vital Talk provides training in communication about serious illness in a culturally sensitive and patient-centered manner. Currently there is not a pediatric specialty track within Vital Talk, however, this interactive communication training is quite applicable to the pediatric population. | https://www.vitaltalk.org/about-us/ |
Skills
Simulation is the hallmark of skill-based learning and can be actualized as high- or low-fidelity simulation, role-play, prescribing exercises, and case-based discussion.19,20 In addition, simulation can be used for ongoing learning, to maintain and improve competencies through quality improvement and break down barriers of departmental and discipline silos.21 Specifically in palliative care, interdisciplinary communication has been demonstrated to be positively impacted by simulation.22,23 Simulation is described in more detail in the section, “Models of Training.”
Attitudes
Attitudes can be influenced by knowledge and skill-based learning, however, mentoring often serves as the catalyst for lasting adoption of attitude change and helps facilitate adaptive coping skills, potentially mitigating the emotional aspects of caring for children with serious illness. While this can be positive or negative adoption, engaging in nurturing teamwork can improve patient safety, communication, staff support, situational awareness, and leadership style, Team STEPPS, developed by the Agency for Health Care Quality (AHRQ) and the Department of Defense (DOD) (https://www.ahrq.gov/teamstepps/instructor/index.html), is an example of team-based learning and mentoring that has demonstrated impact on team attitudes.24 Mentoring across disciplines embraces the interdisciplinary nature of palliative care, where clinicians are often faced with addressing physical, psychosocial, spiritual, and environmental aspects of suffering.25 Engaging in interdisciplinary mentoring encourages collaboration and partnerships in care.26
Models of Training
One size does not fill all teams. The purpose, dynamics, and structure of teams vary. Finding the training model that works best for each unique team, from novice to expert, is essential to success.24,27 Utilizing an interdisciplinary team approach to learning provides opportunities for members to learn from one another and appreciate differing perspectives.28,29 This section outlines several models of interdisciplinary training in PPC but is not all inclusive.
An Interdisciplinary Palliative Care Training Model: Tri-Discipline Approach
Training of future clinicians and leaders in the field of PPC should be offered in the model in which care is delivered. This model of training is exemplified in the Boston Children’s Hospital/Dana-Farber Cancer Institute Pediatric Advanced Care Team’s tri-discipline fellowship training program. Physicians, nurse practitioners, and social workers train side by side as PPC fellows in this unique learning experience.30 Fellowship is 1 year, and fellows are each salaried with benefits.
Each clinician learner brings to the fellowship his or her own discipline-specific training and experience. By the end of the fellowship, the goal is that all clinicians will have gained core palliative care knowledge, begin to master interdisciplinary teamwork, and hone their skills in their unique disciplines to contribute fully to the caregiving team.
All fellows participate in core curriculum didactic training, both alone and with the adult palliative care fellows (physicians, nurse practitioners, and pharmacists). The core curriculum includes intensive training in communication, pain and symptom management, ethics, bereavement, and processing moral distress. Here, “moral distress” is defined as the cognitive-emotional dissonance that arises when one feels compelled to act against one’s moral requirements.31 As a result, pediatric fellows learn from each other and have the added value and perspective gained from their adult palliative care counterparts. The multiple perspectives of interdisciplinary learners and instructors contribute to the deep understanding of these didactic offerings.
The vast majority of training occurs in the clinical field under the guidance of highly skilled interdisciplinary clinicians who model best care and communication practices. Fellows move toward independent clinical work, ultimately leading rounds, new consults, and directing patient care under the watchful mentorship of experienced discipline-specific clinicians with feedback from the entire interdisciplinary team.
This fellowship aims to have learners leave with advanced practice training and clinical experience. The goal is to prepare fellow graduates to move on to independent clinical practice and program leadership and position them to become leaders in research and education. They also leave with a deep understanding and appreciation of the value of interdisciplinary care in caring for children with serious illnesses and their families.
Multidisciplinary Psychosocial Fellowship
While the core triad of a palliative care interdisciplinary team is a nurse, a physician, and a social worker, there are many other disciplines that deeply enrich the care provided. Psychosocial team members, which may include chaplains, child life specialists, psychologists, psychiatrists, and creative/expressive arts therapists, often provide extensive support to a patient and family before, during, and after death. While their contributions are invaluable, the ability for psychosocial providers to access advanced training with an interdisciplinary PPC team is rare. The Y.C. Ho/Helen & Michael Chiang Foundation has funded the Multidisciplinary Psychosocial Fellowship at the Children’s Hospital of Philadelphia and the social work fellowship at Boston Children’s Hospital/Dana-Farber Cancer Institute.
Social workers, chaplains, child life specialists, and creative/expressive arts therapists are all eligible to apply to this 1-year funded fellowship for one psychosocial provider. Formal supervision is provided by the whole psychosocial team, with added support from the team member who shares the primary discipline of the psychosocial fellow. Fellows participate in the care of inpatient, outpatient, and home hospice patients with a focus on psychosocial support provided in the home environment. The psychosocial fellow joins the medical fellowship cohort for didactics and support. Mentored educational scholarship, including presenting at palliative care grand rounds, is required in hopes of encouraging interdisciplinary teaching. This fellowship aims to have psychosocial providers develop skills and comfort in providing psychosocial support to patients, siblings, and their families as well as bereavement support for siblings and families after the child’s death.
Simulation-Based Interdisciplinary Education
Interdisciplinary education simulation enables learners of all levels and disciplines to gain an appreciation for one another’s role, improve teamwork, and perform hands-on skills.32 Students in interdisciplinary simulations experience cognitive and behavioral changes after learning about the core principles and concepts that contribute to other disciplines.33
Simulated experiences prepare healthcare workers for clinical situations and contribute to safe and efficient care of patients.34 While most interdisciplinary simulations have focused on acute events such as resuscitation, a growing number are using high-fidelity (highly realistic, often using actors) simulations in the palliative care field, including those focusing on spiritual assessments, discontinuation of life-sustaining technology, disclosure of death, and palliative care communication with interpreters.20,22,35,36,37,38,39,40,41,42 Interdisciplinary education occurs in two places: (1) during the simulation scenario, in the form of combining two or more disciplines (physician, nurse, social worker, interpreter, pharmacist, psychologist, or chaplain), and (2) during the debrief, which can also include actor/parent and clinician participation. Participants can portray their own discipline or another to better understand the unique challenges of others’ roles. TeamTalk, an interdisciplinary adaptation of VitalTalk, utilizes physicians, nurses, chaplains, and/or social workers and can be adapted to include interpreters, physical therapists, and other disciplines.37
In its most advanced form, interdisciplinary education is built into the health education system itself, blending interdisciplinary teaching with a multidisciplinary audience of learners.39,42,43,44,45 The Institute for Professionalism and Ethical Practice (IPEP) conducts programs focusing on difficult conversations among clinicians, patients, and families.46 IPEP, which has trained more than 6,000 individuals, uses a validated approach to hands-on learning, the Program to Enhance Relational & Communication Skills (PERCS). PERCS incorporates ethics and practice, simulation using skilled actors, and patient and family voices. Workshops bring together interdisciplinary participants including patients, family members, staff, and facilitators in a model that dissolves barriers and models team communication.47,48,49 This model was adapted for busy hospital-based practices by moving sessions into the hospital.49
Mededportal Interprofessional Education Collection
The Interprofessional Education Collaboration (IPEC) was founded in 2009, by representatives from medical, nursing, pharmacy, osteopathic medicine, dentistry, and public health.50 Core competencies focus on four domains: values and ethics, roles and responsibilities, interprofessional communication, and teams and teamwork.51 IPEC partnered with MedEdPORTAL, the American Psychological Association, Physician Assistant Education Association and American Physical Therapy Association, to create the Interprofessional Education Collection.52 One palliative care example is “Incorporation of an Interprofessional Palliative Care-Ethics Experience Into a Required Critical Care Acting Internship.” The collection fosters the identification, development, and deployment of educational resources aimed at supporting the team-based care essential to training an interdisciplinary workforce.52 The collection creates a national repository of curriculum resources for interdisciplinary education.
Mock No Codes
Mock code training has been a standard in medical and nursing education since the 1990s and has improved survival outcomes.53 Yet there is little training on how to respond to requests for code interventions when the clinical situation does not warrant intensive, life-sustaining interventions. Clinicians may have differing education on resuscitation in these complex scenarios, which may impact team cohesiveness and family education.54 Nurses and respiratory therapists often report little to no education on do-not-resuscitate (DNR) orders.55 While physicians and advanced practice nurses report some education, only 44% of medical students report retaining knowledge regarding DNR and advance care planning, with only 16% retaining knowledge of how to respond to religious and cultural issues surrounding death and dying.56 In other studies, graduating pediatric residents reported not feeling adequately trained to fulfill the responsibilities associated with providing palliative and end-of-life care for children.57,58
One method of addressing these complex issues is to consider “mock no-code” simulation. Similar to communication skill–based simulation training, this approach utilizes pediatric cases that illustrate how not intervening with intensive, life-sustaining interventions may be in the patient’s best interest to promote comfort and optimize quality of life given the advanced nature of the underlying serious illness. Utilizing skilled critical care and palliative care clinicians as facilitators aids bedside clinicians in addressing requests for resuscitation interventions in various simulated situations. Examples include but are not limited to
• Stopping ventilatory or circulatory support that is no longer clinically indicated
• Family members have conflicting goals of care
• Addressing religious and/or cultural norms
• Ethical situations that impact resuscitation
Further research is needed to validate this approach; however, use of mock no code clinical simulation scenarios may improve clinician knowledge, attitudes, and skills regarding challenging end-of-life situations in PPC.
Primary Palliative Care
Specialty PPC is a well-established model of care delivery; however, access to specialty PPC teams may be limited by geographic availably, hours of service, team members, and confusion with multiple medical teams involved in care and decision-making. The specialty PPC team is used for complex cases or refractory pain and symptom management. Primary PPC is defined as training bedside clinicians in the basic tenets of PPC. Primary PPC education and training improves access to care, mitigates symptom distress, and reduces moral distress for clinicians.59,60 In addition to the models described in this chapter, one such model at Children’s National Hospital utilizes a 12-month education and mentorship program comprised of didactic interdisciplinary group learning, self-directed learning, mentoring, and unit-based quality improvement projects to address knowledge acquisition, changing the culture of PPC within the unit or organization, and skill-based workshops to improve attitudes and skills. This program has trained 271 interdisciplinary clinicians, in four cohorts, and has demonstrated significant increases (p <0.001) in self-reported confidence in introducing PPC, pain and symptom management, communication, end-of-life care, and accessing resources. In addition, nearly 100% of participants stated the training was valuable, and they have made significant changes in their own clinical practice to integrate palliative care earlier for children with advanced, serious illness. Self-reported moral distress decreased by 33% across all four cohorts. Findings have been sustained over 2 years to date.59 This model has been replicated in several other healthcare systems across the United States with similar preliminary findings.
In this curriculum, the quality improvement projects and mentoring were key to changing culture and sustaining impact. Engaging participants in what matters most to them in their clinical work prompted change in policy and procedures in caring for children with serious illness and their families. One example is integrating PPC into a specialty neuro-oncology clinic, which increased early hospice referrals, demonstrated increase in advance care planning, and improved communication between specialty teams.61 Opportunities for rounding with the specialty PPC team also provided opportunities for interdisciplinary mentoring, while one-on-one or small-group mentoring by one or two PPC leaders provided opportunities for exploring moral distress and initiatives to promote resilience.62
Hospice Team Education
There are few stand-alone PPC programs, most likely due to patient volumes. Although many adult hospices have pediatric specialty teams, their volume is often low, and, as a result, professionals may lack confidence in their care of children.63,64,65 Several approaches for educating hospice providers may be helpful. Hospices may partner with local tertiary care pediatric centers, especially those with specialty PPC teams, to join in collaborative education programs.66 The primary PPC program illustrated in the previous section includes community hospice partners in this education program. This has improved communication and collaboration across care settings. Shared interdisciplinary education programs improve understanding of roles, sharing of resources, and collaboration in care.
Other options for education for hospice providers include offering PPC training within their local hospice, such as ELNEC-PPC or EPEC-Peds, or inviting members from the local tertiary care center specialty PPC teams to present in-services and workshops. Given the limited staffing and not-for-profit nature of the financial structure of hospices, it may be difficult for hospice providers to be relieved of patient care duties to attend all-day or multiday conferences. Another option to address this issue includes self-directed or online learning curriculums for PPC. One such program is available through the California State University and offers online education toward a certificate in PPC for nurses and other interdisciplinary team members and includes a team education option.67 Several other programs are in development, and ELNEC-PPC and EPEC-Pediatrics have online learning options that can be adapted for the hospice audience. AAHPM and HPNA also host pediatric webinar learning opportunities. The NHPCO and the CAPC have online pediatric learning opportunities. There are several state PPC coalitions that provide educational opportunities such as webinars and conferences. Other examples of educational resources are included in Table 7.1, although this is not an exhaustive list.
Project ECHO: “Moving Knowledge, Not People”
Project ECHO (Extension for Community Healthcare Outcomes) is a telementoring medical education program designed to disseminate knowledge and increase the capacity of local clinical teams to provide best practice care. Founded in 2003, at the University of New Mexico,68 it is now an international program, serving more than 70,000 learners in 37+ countries and all 50 states.69 Project ECHO uses video-conferencing and virtual clinics to allow specialist teams to mentor local community providers and staff. There is no direct patient care. Instead, a community of healthcare professionals share knowledge, experience, and best practices to work on specific clinical cases and future cases. The standardized ECHO clinic methodology includes an “interdisciplinary analysis of the case conducted in a participatory manner.”70
Project ECHO is being used in more than 49 programs across 10 countries to foster exceptional palliative and hospice care.70,71,72 Within pediatric palliative and hospice care, programs are located in Canada, Northern Ireland, Uruguay, India, and England.72,73,74 Programs have included medical staff, nurses, students, healthcare attendants, social workers, chaplains, and administrative staff. ECHO Palliative Care programs have demonstrated improved nursing and staff confidence and self-efficacy.75,76
Parents and Families as Teachers
Bereaved Parent Educators in Interdisciplinary Education
The experience was so formed, enhanced, and illuminated by the parents’ presence, generosity, input, and sharing. I was truly blessed by what they brought to our learning. I’m blown away and [as a physician] will never be or teach the same.77
Team Reflection
Kathe was a 7-year-old, born premature at 26 weeks, female with cerebral palsy secondary to an intercranial hemorrhage shortly after birth. She was the light of her family, which included both parents and her three siblings, ages 17, 13, and 3 years. She developed a volvulus at the age of 3 years, which required resection of a large portion of her bowel and creation of an ileostomy. Kathe eventually developed short gut syndrome and was not tolerating full enteral feeds, requiring long-term total parental nutrition (TPN). Multiple attempts were made to slowly reintroduce enteral feeds, but she was admitted approximately every 3–4 weeks over the period of a year for feeding intolerance. Her parents noted that Kathe had lost that sparkle and joy that seemed to radiate from her when she was feeling well. They watched her for several months while intensive symptom management was tried, but Kathe did not recover to her former quality of life. Although she was alert, she did not seem to enjoy even the simple things such as being with her family and her room decorated with her favorite sparkling Christmas lights, which she normally enjoyed all year long. Kathe’s parents requested to stop enteral and TPN, as they felt she was clearly showing them that her quality of life had diminished and that, despite intensive symptom management, she was suffering. The primary team was not in agreement with the family to stop artificial fluids and nutrition. They requested a meeting with the palliative care team and the primary team to discuss goals of care. Kathe’s parents were eloquent in describing her normal quality of life and how they had watched her decline over the past 3–4 years, with more abrupt decline in the past year. They shared that their faith traditions supported a natural death without artificial fluids and nutrition and point blank asked the medical teams if her underlying gut failure could be fixed. The medical team shared that they felt they could prolong Kathe’s life for months to years, however, they could not fix the underlying problem. They asked that Kathe be allowed to feed for comfort but to stop TPN and attempts to increase enteral feeds and allow a natural death with intensive supportive care. The medical team agreed to this plan and Kathe was discharged with home hospice. She died 3 months later, peacefully at home, surrounded by her family and her sparkling Christmas lights with a smile on her face. In this case, the palliative care team was not the educators; it was the family who eloquently shared their definitions of quality of life and supported the primary medical team in coming to terms with stopping artificial fluids and hydration.