Sarah Friebert, MD Director, A Palette of Care Haslinger Division of Pediatric Palliative Care

1. Module 7P: Pediatric Palliative Care Education Appendix 7.1 PowerPoint Pediatric Palliative Care EducationOr: How do we educate ourselves and the next generation of pediatric palliative care specialists? Sarah Friebert, MD Director, A Palette of Care Haslinger Division of Pediatric Palliative Care Akron Children’s Hospital April 2009 sfriebert@chmca.org

2. Objectives/Roadmap • Explicate barriers related to education in pediatric palliative care (PPC) • Discuss the benefits of educational programs • Introduce and develop an understanding of competencies in PPC • Outline an approach to building a curriculum and educational programs • Including medical students and residents in PPC education • Discover resources to inform educational program development • Self-education for pediatric oncologists and team • Fellowship programs

4. Why is this important? • Hematologists/Oncologists have tremendous experience with serious and/or advanced illness • Often role models • Historically have learned by trial and error • Organizational mandates • It matters to families • Heavy cost/burden of doing it badly • Outcomes: coping, satisfaction with care

5. On a practical level • Assessment of current state of PC education in peds hem/onc fellowship: Program Director survey • Important? Yes • 94% extremely/very important for fellows • >70% PDs want education increased • Establishing goals of care w/pts, families • Reevaluating goals of care • Communication around advanced directives • Occurring? No, but… • 71% programs don’t have PC curriculum • 88% plan to increase PC educ for fellows in next 5 years Roth et al, Poster 163

6. AAP and ACGME recommendations AAP • Palliative care fosters fundamental humanistic learning and is an excellent vehicle for teaching basic but often neglected clinical competencies, including • pain and symptom control • Communication • working as part of a health care team • All general and subspeciality pediatricians, FPs, pain specialists, and pediatric surgeons need to become familiar with the provision of palliative care to children ACGME • Faculty must document effective counseling of patients and families by residents, as well as their ability to deliver bad news, based on direct observations and comment from patients and families • include formal instruction on pain control and the impact of chronic diseases, terminal conditions, and death on patients and their families

7. Top 6 Educational Barriers in PPC • #6: Doesn’t happen every day • Infrequency of experience due to rarity of childhood death • Most learning is by “trial and error” • Limited chances to see one, do one, teach one, including spiritual issues and talking to kids about death • #5: Hasn’t been valued in training • Focus on cure and poor attention to non-physical problems in most health training curricula

8. More educational barriers • #4: Differences in age, cognitive stage, developmental level, family unit • unique medical, developmental and psychosocial needs of children • #3: Lack of standards of care for pain and symptom management in kids • little rigorous data means anecdotal practice and education

9. And the biggest ones • #2: More comfortable not to include other learners, have an audience • #1: We already think we’re doing this well, but are we?

10. “The greatest obstacle to discovery is not ignorance but the illusion of knowledge.” Daniel Boorstin

11. What the literature shows: Pediatrics residents find death the most difficult and distressing experience of their training. Coupled with the infrequency of childhood death, most do not feel competent or comfortable providing palliative care to children. Which leads to … • unplanned behaviors that distance residents from patients and their families • Parental dissatisfaction with various aspects of palliative and end-of-life care for their children – pain control, symptom management, and team communication

12. Identification of Resident needs Longitudinal survey study at UCLA • Residents became progressively more comfortable with EOL care with increasing experience • Most difficult aspect in EOL care tends to be resident delivery of bad news • Best educational opportunities by resident report: • talking with families of deceased patients • being involved in physician-family conferences Vazirani RM et al. Crit Care Med. 2000;28:3740-45

13. Identification of Resident needs Survey study at Children’s Hospital of Pittsburgh • Avg # of deaths = 3, terminal illness = 19 • Residents report minimal training, experience, knowledge, competence, and comfort in virtually all areas of palliative care • Not even a moderate level was achieved in any category; lowest including symptom management and communication • Lack of significant improvement from PGY-1 to PGY-3 • Possible reasons include • no formal palliative care training • attendings have no formal training in palliative care or in how to teach palliative care skills Kolarik RC et al. Pediatrics 2006;117(6):1949-54

14. Data about fellow education • 1-day workshop held for 32 ped onc fellows • pre- and post- questionnaires • 81% and 69% participation at 6 & 12 mos • Seminar not outlined • Barriers to EOL unchanged before & after • Staff discomfort with death • Lack of knowledge • Family avoidance of death discussions • Attitudes: perceived competence & comfort up • Knowledge: most back to baseline at 12 mos • Impact: >50% very much or extremely influenced • Conclusions: earlier & ongoing efforts needed Gerhardt et al. J Pall Med 2009;12(4):323-8

15. Examples of Educational Plans 6-part seminar series for PGY-2s at the University of Arizona • Pretest: discomfort about discussing EOL care with families, initiating conversations regarding impeding death and limitation of medical care, discussion of options of terminal care, especially across ethnic backgrounds or in developmentally appropriate ways TABLE 1. Seminar Series Overview Session Topics Covered Facilitators or Guests 1 Defining death in medical and legal terms, declaring death, documentation of death, arranging organ donation, discussing autopsy 2 Symptom management Pain, anxiety, fluids/nutrition, seizures, Hospice director, former ICU nurse, MD bowel/bladder, respiratory symptoms with expertise in complementary and alternative medicine 3 Roundtable discussion: Giving bad news, discussing "do not Gen peds, PICU MD, peds hem/onc resuscitate," interacting with families at the time of death and oncologist, peds pulmonologist thereafter, 4 Caring for patients from varying ethnic and cultural backgrounds Anthropologist 5 Death in the context of the family Parent of deceased child, community- based social workers 6 Impact of death of pediatric patients on physicians and their Spouses/significant others, psych partners • Post-test: all areas showed improved comfort • But bedside teaching alone is not adequate for resident education of EOL care Bagatell R et al. Pediatrics 2002;110(2):348-53

16. Educational Plan Six 1-hour lectures for residents at Stanford University • Pretest: confidence higher in PGY-3 but all expressed need for formal instruction especially in: • Transition from curative to palliative care • Pain management • Non-pharmacologic methods of pain control • DNR discussion/organ donation • Stress of residency precluding appropriate grief response • Post-test: showed improvement in all areas except: • Overall stress of residency impeding the processing of a death • Belief that expressions of grief are unprofessional as a physician Schiffman, JD et al. J Pall Med. 2008;11(2):164-9

17. What should we be teaching? • Companion Document: Core Competencies for Hospice and Palliative Medicine Fellowship Training • www.acgme.org, www.aahpm.org • Learning objectives in Pediatric Hospice and Palliative Medicine • Adapted from Core Competencies • Can be cut & pasted for CME/CEU sessions • Geared toward fellows but good fodder

18. The Biggies • Communication skills • Breaking Bad News • The Day One Talk • Pain and symptom management • Psychosocial and spiritual dimensions of care • Advance directives/code status • Self-care • Include debriefings after difficult cases, deaths • Ethical issues • Don’t tell my child s/he has cancer

19. What everyone can offer:Core Components • Clinical experiences: Direct exposure, real situations • Integrate learners into the clinical team • Direct, hands-on role in patient care • Participate in family meetings • Didactic program: Build framework of knowledge • Lectures • Cover material not found in clinical experience • Small group, patient-based discussions • Cases with pre/post questionnaires • Journal clubs with topics pertinent to patient care • Debriefings after difficult patient interactions or the death of a child

20. Advanced Programs with Palliative Care Team • Clinical experiences • Other care settings: outpatient clinics and the home environment… • Other practitioners: adult practitioners, hospice agencies, hospital-based programs… • Didactic program • Debriefing from the “other experiences” • Advanced practitioner courses • CME/CE courses

21. Established programs • Often have more formalized program • Clinical rotations • Medical student, resident electives • Advanced practitioner courses • Adult-focused fellows • Pediatric fellowship programs

22. Suggestions for Teaching Formats • Didactics, while informative, will not fill the gap in education alone • Role modeling is felt to be useful for practice and provides an environment for feedback • Presence of palliative care service – can be responsible for teaching at the bedside • Interactive, case-based discussions regarding pain and symptom management • Interactive small group discussion with role-playing • Educational interventions in places where death is expected (PICU/NICU) • Off-campus day-long seminars with standardized patients for PGY-2 • Six off-site weeknight seminars for upper level residents • Taking full advantage of beside teaching opportunities • Monthly hour-long noon conferences

23. Ideas for Specific Formats • Simulations of palliative care “situations” • 2nd year one-month non-elective elective for hem/onc fellows • Journal club with palliative care focus • Integrate palliative care topics into core lecture for fellows (& include residents) • Outside pediatric hospice/palliative care rotations if not offered at institution • Palliative medicine clinic rotation in adult setting if available • Reflective Practice and Leadership

24. How this might affect oncology • Increasing interest in pall med as a career • Solo • In combination with pediatric oncology • “Undecided” between the two career options • Elective rotations in hem/onc for palliative medicine fellows • Clinical or translational research projects • Joint educational programs for fellows • Faculty in fellowships (bidirectionally)

25. The subspecialty advances • Prior board certification through ABHPM • New “official” board certification through ABIM; ABP one of 10 co-sponsoring boards • Exam offered every other year (1st 2008)

26. Requirements to take exam • Grandfathering period • 2 years of 20% time doing palliative care • Must be completed at time of application • Demonstrated involvement with IDT • NOT oncology experience in and of itself • Post-grandfathering period • After 2012, completion of ACGME-accredited fellowship will be required to sit for exam

27. PPC Fellowships • Generally, one year • Some programs offering 2nd year • Research year • MPH program • Cannot be done “within” hem/onc fellowship

28. Components of PPC fellowship • 6-7 months of inpatient/outpatient PPC • Continuity • Ambulatory experience • Includes perinatal experiences • Home hospice • Adult hospice/palliative medicine • Long-term care • “Electives”: pain clinic, oncology experience, ethics, HPM administration, subspecialty immersion (cardiology, neurology, radiation oncology)

29. Fellowship experiences • Currently 4 pediatric-specific • Training 1 fellow/year • Several more in development • Require board-certified MD as director • “Adult” programs with pediatric focus or second year available • Preference for career track, not oncologists interested in learning better palliative medicine (workforce issues)

30. THEREFORE • Onus is on teaching better palliative care skills within oncology training for those who will have primary oncology career • AND: We need people to be interested in and take the exam • Workforce issues • Credibility of the field • Fellowship faculty

31. Pearls • Just as we treat every child as if s/he is our own, we should teach as we were or wish we had been taught • Call on your PPC faculty to be integrated into your teaching opportunities, if available

32. Available Resources • General education: • The Accreditation Council of Graduate Medical Education (ACGME) • The Association of Pediatric Program Directors (APPD) • Palliative care education: • ACGME competencies document: www.acgme.org • End of Life/Palliative Care/ Resource Center (EPERC) • www.eperc.mcw.edu/format_cases.htm • The American Academy of Hospice and Palliative Medicine (AAHPM): www.aahpm.org • NHPCO Pediatric Palliative Care Curriculum (older version): www.nhpco.org/pediatrics

33. Available Pre-made Curricula or Experiences • IPPC: www.ippcweb.org • Family involvement, process-oriented • ELNEC-Peds: www.aacn.nche.edu/ELNEC/Pediatric.htm • Nursing-focused • EPEC-Oncology (adult) • AAP Provisional Section on Hospice & Pall Medicine: • www.aap.org • Harvard PCEP course (advanced) • www.hms.harvard.edu/cdi/pallcare/pcep.htm • NHPCO pediatric palliative care curriculum – updated • Coming soon to a theater near you: www.nhpco.org/pediatrics • PC Program Development: www.capc.org • Pediatric PCLCs: Akron Children’s, Minneapolis

34. Other Resources and Literature • Reflective Practice and Leadership: • Baylor College of Medicine • www.reflectivepracticeleadership.org • Kolarik RC, Walker G, Arnold RM. Pediatric resident education in palliative care: a needs assessment. Pediatrics 2006;117(6):1949-54. • McCabe ME, Hunt EA, Serwint JR. Pediatric residents’ clinical and educational experiences with end-of-life care. Pediatrics 2008;121:e731-7.

35. More References • Baker JN, Torkildson C et al. National Survey of Pediatric Residency Program Directors and Residents Regarding Education in Palliative Medicine and End-of-Life Care. J Pall Med 2007;10:420-9. • Sahler OJ, Frager G et al. Medical Education About End-of-Life Care in Pediatric Setting: Principles, Challenges, and Opportunities. Pediatrics 2000;105(3):575-84. • Korones DN. Pediatric Palliative Care. Pediatr Rev 2007;28:46-56.