Stefan J. Friedrichsdorf, MD,

Transcription

1 From Denial To Palliactive: Practical Steps for Developing a PPC Program. Part 1:Training Stefan J. Friedrichsdorf, MD, FAAP Medical Director, Department of Pain Medicine, Palliative Care & Integrative Medicine Children's Hospitals and Clinics of Minnesota, Minneapolis/St. Paul, MN Associate Professor of Pediatrics, University of Minnesota Medical School stefan.friedrichsdorf@childrensmn.org Grazie mille per l'invito a insegnare e imparare qui a Roma! Download Handout:

2 Objectives: Training ONE: Explore the 4 steps of PPC program implementation TWO: Develop successful components of an Interactive Lecture Hook Attitude Knowledge Skill THREE: Review PPC Training Opportunities PART ONE You are ready to build a Pediatric Palliative Care Program The 4 Developmental Stages of PPC Program Implementation

3 The 4 Developmental Stages of PPC Program Implementation A universal reality is that, overwhelmingly, in places where pediatric palliative care has not existed before will require major cultural adaptation. Friedrichsdorf SJ, Bruera E: Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive. Children (9), Stage 1 Stage 1: Denial No awareness of need for PPC program Limited or no measurement of amount of physical and emotional distress suffered by children and their families Our patients usually have good symptom control We already got it, we cover everything and don t need you. They are not ready yet syndrome (Ana Lacerda Disease)

4 Stage 1: Denial Important approach: Carefully and rapidly document level of unmet need in patients and families in institution Simple surveys of uncontrolled symptoms or emotional distress Parents testaments, in writing or in a short movie clip Stage 2: Palliphobia Stage 2: Palliphobia Recognition there is problem, but usually meets consistent fear about consequences of problem and possible solutions Many individuals can react in negative way / anger to developing PPC team

5 Stage 2: Palliphobia Clinicians may feel professional competence questioned or even threatened by PPC team May be afraid of referring patients because of concerns over criticism of symptom control, communication or overall treatment strategies they have used for many years We asked them and they said no She is not dying now There is always something else we can try It is too early Hospice? That s wonderful, but that is for other people You talking to the family means destroying hope We are still fighting Exacerbation of Palliphobia......if PPC... Tries too hard Too fast to make changes in patient care After major confrontation, PPC usually succeeds in changing analgesic, communication strategy or change discharge plan, but... Likely no more consults/ referrals from this team Negative reputation in institution More difficult to overcome than Denial - requires disciplined planning and rapid conflict resolution Stage 2: Palliphobia Useful Strategies may include Making great efforts at reassurance to existing clinical team that PPC Work in integrated fashion with them Not disqualify their patient care plan, but rather enhance by focusing on aspects not addressed so far

6 Stage 3: Pallilalia Stage 3: Pallilalia Usually 2-4 years after establishment of PPC initiative Repetitive nonsense spoken about PPC, without anything being done to advance its development Leadership describe PPC as very important or a major priority, but there s no significant allocation of personal, space, money, curriculum time etc. Dangerous stage: results in burnout among PPC professionals Pallilalia Colleagues frequently talk about how useful PPC is, but refer only small minority of patients with terrible problems This attitude: PPC not viable financially and administratively Institutions at this stage frequently: Appoint a committee to discuss PPC Propose major study whether PPC works in their institution or, suggest PPC applies for external grant, so funds can be obtained for a pilot program in a year or two decide that $ 250,000 donated to the program are used to offset other general losses...

7 Pallilalia Most programs have disappeared at this stage Colleagues and institutions became used to beneficial presence of PPC, while having made no major commitment to support it Important to anticipate this developmental stage by gathering data of provided clinical services Patient seen Teaching conducted Research studies, etc. Pallilalia: PPC teams should Aim mostly at leaders of hospital and medical schools (rather than just immediate supervisors or peers) when providing documentation of work Request, that information be compared to output and resources of other programs Ask for external review by national or international leaders in the field Sadly, occasionally only through resignation of leader, institutions come to realize that PC has been badly under-resourced, and start corrective measures during process of recruiting a successor Stage 4: Palliactive

8 Stage 4: Palliactive PPC recognized by Appointment and funding of professionals Designation of administrative structure (department or division) Allocation of space Formal Curriculum space and training program rotations PPC recognized when Colleagues actively refer patients to PPC Encourage other colleagues to do the same The 4 Developmental Stages of PPC Programs Implementation 1. Denial 2. Palliphobia 3. Pallilalia 4. Palliactive 5. Pallia-freakin-awesome But regression can happen at any time (frequently due to changes in administrative leadership within institution) PART TWO Training & Teaching

9 Knowledge Knowledge Skills Patient / Family Outcomes Behavior General considerations Hook Attitude Knowledge Skills Behavior Patient / Family Outcomes Societal Experience Dixon J. Evaluation and the Health Professions, Hook

10 2. Attitude 3. Knowledge Increasing lecture effectiveness Change pace every 8-10 minutes Use visuals Invite audience participation

11 Increasing lecture effectiveness Increasing lecture effectiveness Know your material Prepare room and test AV equipment Use humor appropriately Be prepared for challenging participants Do NOT (!) read to the audience Rehearse, rehearse, rehearse 4. Skill

12 Small Group work, please PART THREE Postgraduate Training & Courses Postgraduate Training & Courses

13 End-of-Life Nursing Education Consortium ELNEC-PEDIATRIC PALLIATIVE CARE national Postgraduate Training & Courses

14 Stefan J. Friedrichsdorf, Stacy Remke, Joshua Hauser, Joanne Wolfe Funded by the National Institute of Health / National Cancer Institute [1 R25 CA ] EPEC.Pediatrics@childrensMN.org Expert Advisory Group (n=11) started 2010 Initiated Curriculum Development Oversaw EPEC-Pediatrics Curriculum-Writing Writers Group (n=31) Curriculum Development Created 24 modules: Teachers guide & PowerPoint/Keynote slides Trigger tape video Production 2011 Professional Development Workshop (PDW) Chicago, Il. Trained 22 Master Facilitators EPEC-Pediatrics Core Editors (n=4) Editing 19 Online Modules; 5 Face-to-face Modules Trigger tape video development & inclusion Pre-/Post Evaluation Question Editing Teacher s Guide 6th Train-the- Trainer Conference* (n=48) with CPAC Toronto, Canada 5th Train-the- Trainer Conference* (n=48) with CPAC Montreal, Canada EPEC-Pediatrics Online Modules Accessible For prospective EPEC-Pediatrics Trainer Above outside NIH Funding* 10th Train-the-Trainer Conference* (n=55) Coimbatore, India 2nd EPEC-Peds LatinoAmérica* In Spanish (n=50) Memphis, TN 12th Train-the-Trainer Conference* (n=49) Nazareth, Israel EPEC-Peds End-User Conference* (n=37) with OMI Salzburg, Austria 1st Train-the-Trainer Conference (n=48) Beta-Testing Boston, MA 2nd Train-the- Trainer Conference (n=52) with ASPHO Miami, FL 3rd Train-the- Trainer Conference (n=50) with AAHPM San Diego, CA 7th Train-the- Trainer Conference (n=53) with ASPHO Phoenix, AZ 8th Train-the-Trainer Conference (n=52) with AAHPM Chicago, IL 9th Train-the- Trainer Conference* (n=56) Auckland, New Zealand 1st Curso de Capacitatores EPEC-Peds LatinoAmérica* In Spanish (n=58) Montevideo, Uruguay 11thTrain-the- Trainer Conference (n=44) with ASPHO Montreal, Canada 4th Train-the-Trainer 1st Pediatric Curriculum Conference (n=56) Professional Refinement Development with EPEC Workshop (PDW): Oak Brook, IL 19 Master Facilitators Evaluate effectiveness of training Assess Attitude change, knowledge improvement, skill development 24 Modules 1-11: Nuts and Bolts 1. Pediatric Palliative Care Overview 2. Child Development 3. Family Centered Care 4. Grief and Bereavement 5. Professional Care for Professionals 6. Team Collaboration and Effectiveness 7. Communication & Planning 8. Ethical & Legal Considerations 9. Introducing Quality Improvement in PPC 10. Teaching with EPEC-Pediatrics in the Face-to-Face Setting 11. Teaching Pain & Symptom Management

15 24 Modules 12-24: Advanced Pain & Symptom Management 12. Multimodal Analgesia: Acute Pain Management 13. Opioid Selection and Opioid Rotation 14. Neuropathic Pain Management and Adjuvant Analgesia 15. Procedural Pain Management Strategies 16. Chronic/Complex Pain Management 17. Management of Gastrointestinal Symptoms 18. Management of Respiratory Symptoms 19. Management of Fatigue, Psychosocial & Psychiatric Symptoms 20. Management of Neurological Symptoms 21. Management of Refractory Distress 22. Preparation for Imminent Death 23. Integrative Medicine 24. Methadone Virtually a college Core Faculty Professional Development Workshop Master Facilitators Trainers Become a Trainer immersion conference Professionals & End-users Ultimately, what do you get? Trainer s guide PowerPoint presentations Trigger videos

16 24 Modules (Maximum) 18 modules online plus (Minimum) 6 modules Face-to-Face: Teaching-how-to-teach => Trainer Professional Development Workshop plus supervised teaching => Master Facilitator 687 EPEC-Pediatrics Trainers 55 Master Facilitators 54 countries ( )

17 Next Steps Updating all Material Spanish EPEC-Peds LatinoAmérica Curso de Capacitatores French Slides Translated International Version: Low-Medium Income Countries Justin Baker Communicable Disease (HIV/AIDS, malaria, TB, pneumonia) Malnutrition Limited Access to medications Postgraduate Training & Courses Physician Fellowships USA Pediatric Palliative Care physician Fellowship: 36 location, 39 slots Canada: 2 years, e.g Toronto Australia: Sydney, Brisbane, Melbourne NZ, UK, Argentina, Costa Rica, South Africa Mentorship

18 Post Graduate Training AUSTRALIA: Master of Palliative Care, College of Nursing and Health Sciences, Flinders University, Australia postgrad/mpc.cfm BELGIUM: Université Catholique de Louvain (Brussels, Belgium) and Université Catholique de Lille (France): Multi-university diploma IRELAND: Master/Postgraduate Diploma in Health Sciences PORTUGAL 124-hour course - Portuguese Catholic University School of Public Health and Family Medicine Post Graduate Training SOUTH AFRICA International Diploma program - University of Cape Town; School of Public Health and Family Medicine UGANDA Mildmay Uganda; Diploma in Paediatric Palliative Care registrar@mildmay.or.ug Italy: Master in PPC, Bologna Accedemia delle Scienze di Medicina Palliative asmepa.org UNITED KINGDOM Cardiff University; Palliative Medicine/ Palliative Care(MSc/PgDip) course/palliative-medicine-for-health-care-professionals-msc-part-time Coventry University; Paediatric Complex, Life-Limiting, End of Life Care Dec 2-7, 2018 and May 5-10, 2019 Partial scholarships available

19 Key Conferences For first time: Pediatric Track (Task force: Fin Craig & Lizzie Chambers)

20 SAVE THE DATE JUNE th Cardiff International Children's Palliative Care Conference 2019

21 2nd PPOS September 2018 St. Jude s Memphis, TN

22 12th June 13-18, International Scholars Education in Palliative and End-of-life Care EPEC-Pediatrics 2019 In Spanish: Curso de Capacitatores EPEC- Peds LatinoAmérica: South America, Nov 2019 Professional Development Workshop: South America, Nov 2019 Contact: EPEC.Pediatrics@childrensMN.org Become an EPEC- Pediatrics Trainer: Pune, India, January 19-20, 2018 Manjiri Dighe Mercedes Bernada Become an EPEC-Pediatrics Trainer: Minneapolis, MN, USA: Oct 2-4, 2019 Professional Development Workshop: Minneapolis, MN, USA: Oct 5, 2019 Become an EPEC-Pediatrics Trainer: Sydney, Australia: March 8-9, 2019 Professional Development Workshop: Sydney, Australia: March 6, 2019 Joanne Wolfe, Stefan Friedrichsdorf Ross Drake Socrates ( B.C.) I cannot teach anybody anything. I can only make them think.

23 Stefan J. Friedrichsdorf, MD, FAAP Save the Date: Contact: 12th International Symposium on Pediatric Pain (ISPP) Basel, Switzerland, June 16-20, Education in Palliative & End-of-life Care [EPEC] Become an EPEC-Peds Trainer Conference, Oct 2-4, Professional Development Workshop, Oct 5, th Pediatric Pain Master Class Minneapolis, Minnesota, USA June 13-18, Medical Director, Department of Pain Medicine, Palliaove Care and Integraove Medicine, Children's Hospitals and Clinics of Minnesota Associate Professor of Pediatrics, University of Minnesota President-Elect of the Special Interest Group on Pain in Childhood of the for the Study of Pain (IASP) 2525 Chicago Avenue South Minneapolis, MN 55404, U.S.A. phone +1-(612) hrps://