David Nowels , MD, MPH Jackie Williams-Reade, Ph.D., LMFT Barry J. Jacobs, Psy.D .

1. Session # A1b Friday, October 16, 2015 Less Suffering, More Living: Integrated, Behaviorally-Informed Approaches to Adult and Pediatric Palliative Care David Nowels, MD, MPH Jackie Williams-Reade, Ph.D., LMFT Barry J. Jacobs, Psy.D. Collaborative Family Healthcare Association 17thAnnual Conference October 15-17, 2015 Portland, Oregon U.S.A.

2. Faculty Disclosure The presenters of this session • currently have the following relevant financial relationships (in any amount) during the past 12 months: • 20% of Barry Jacobs’ salary is covered by a grant from Independence Blue Cross of Philadelphia for working on the Crozer-IBC Medicare Advantage Super-Utilizer Program

4. Learning ObjectivesAt the conclusion of this session, the participant will be able to: • Define palliative care as a person-centered, continuous approach to chronic disease management • List the key components of a PCMH-based palliative care program • Delineate to goals of a pediatric palliative care program • Describe the rationale for integrating palliative care into community-based programs for frail elderly, high-utilizing patients

5. Bibliography • --”Working with the Super-Utilizer Population: The Experience and Recommendations of Five Pennsylvania Programs,” 2015, available at http://www.aligning4healthpa.org/pdf/High_Utilizer_Report.pdf • Rich E, Lipson D, Libersky J, et al. Organizing Care for Complex Patients in the Patient-Centered Medical Home. Ann Fam Med 2012;10:60-6 • Bayliss EA, Balasubramianian BA, Gill KM. Perspectives in Primary Care: implementing patient-centered care coordination for individuals with multiple chronic medical conditions. Ann Fam Med 2014;12:500-50 • Murray SA, Boyr K, Sheikh A, et al. Developing primary palliative care. BMJ 2004; 329:1056

6. Learning Assessment • A learning assessment is required for CE credit. • A question and answer period will be conducted at the end of this presentation.

7. Today’s Talk • Our fragmented system of caring for the chronically ill • What is palliative care? • HeathTeamWorks guideline • A primary care approach to palliative care • Pediatric palliative care • Palliative care and population health programs

8. Demographic Imperative Baby Boomers • One in 5 Americans will be > 65 within 2 decades. • People > 65 are more likely to have multiple chronic illness.

9. Living with Chronic Illness – current situation Medical care for patients with advanced illness is usually characterized by: • inadequately treated physical distress • fragmented care systems • poor communication between doctors, patients, and families • enormous strains on family caregiver and support systems.

10. Chronic Illness Management(Current State) Single patient with multimorbidity Diabetes COPD CKD

11. What people want during advancing illness Seamless, person-centered, coordinated care that allows them to live productively and as comfortably as possible.

12. Barriers to the care people with advanced illness want • Care delivery systems – siloes, payment mechanisms more important than personal goals, variation geographically • Healthcare professionals – unprepared, focused on disease management • Policies – misaligned payment systems and incentives, no best practices • Healthcare consumers – low health literacy, poor understanding of advanced illness

13. Primary Care Response - PCMH • holistically patient centered, • delivery across settings and illness, • focus on accessibility, • enhancing patient safety and delivery quality, and • with coordination from a relational perspective Proving it’s effectiveness Hitting Triple Aim Evolving new models – integrating PC and BH as example

15. Palliative Care • relieves suffering across multiple domains of the illness experience, • is driven by patient goals and values, • enhances communication and coordination of care, and • is available at any time in the illness experience (IOM and WHO) Look quite similar to PCMH principles

16. Palliative Care (PC) “The art and science of patient and family-centered care aimed at attending to suffering, promoting healing and improving quality of life” ~Javier Kane, MD

17. Components of Palliative Care • Quality of life • Pain and Symptom Management • Communication • Ethical Decision making • Advance Care Planning • Grief & Bereavement “It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease.” (Klick & Hauer, 2010) See HealthTeamWorks forms

18. Specialty vs. Primary Palliative Care • All the benefits cited, identified in specialty palliative care • Another silo • Not available to all people • Used too late to reap maximum benefits • All clinicians can provide basic elements of palliative care • Need training • Need systematic approaches

19. A new theory - Use the PCMH model to deliver primary palliative care in primary care practices. • What would that look like? • What would it take to make that happen? • What would the outcomes look like?

21. Integrating Primary Palliative Care in Chronic Illness Management (integrated) Physical symptoms/function Emotional problems CKD COPD Diabetes Social issues concerns Spiritual/Existential Care Planning

22. What would be required to systematically integrate primary level palliative/supportive services in primary care practice?

23. Examples from Outside the US • http://www.goldstandardsframework.org.uk • http://www.gpscbc.ca/psp-learning/module-overview/end-of-life • http://www.palliativecare.org.au/Resources/Professionalresources.aspx

24. Process – adapting practice transformation methods • Systematically identify population at risk for having supportive care needs - registry • Screen that population – Palliative Outcome Scale • Target palliative care elements for improvement – develop outcome measures (pain, depression, ACP) • Develop specific patient supportive care plans –PEPSI COLA tool • Internal practice resources – coach, rapid cycle QI • External practice resources – education, coach • Monitor outcome measures • for patients • for practice

25. Integrating Supportive Care in Primary Care Practice – results of a demonstration project • Can practice improvement/transformation approaches be used to systematically integrate primary supportive services in primary care practices? YES! • What are the barriers? All the usual – multiple demands on time and attention. Step-wise implementation. • What is required by practices to implement? Leadership, interest, time to meet to plan. Revisioning concept of primary palliative care as a process

26. Integrating Supportive Care in Primary Care Practice – results of a demonstration project • What are the impacts on practices? Positive responses by staff. Less time to have conversations than expected. Team processes. On patients and their loved ones? Positive reactions by patients. On the healthcare system? Increase in advance care planning.

27. Pediatric Palliative Care (PC) “The art and science of patient and family-centered care aimed at attending to suffering, promoting healing and improving quality of life” ~Javier Kane, MD Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family Requires a broad multidisciplinary approach that includes the family and makes use of available community resources (WHO, 2008)

28. Model of Palliative Care Historical Current Curative treatment Palliative treatment Bereavement D E A T H Palliative = “No hope” Diagnosis

29. 4 categories of children who would benefit from PPC 1 – cure is possible, but may fail. Example: cancer 2- premature death is likely, but treatment prolongs quantity and quality of life – sickle cell disease 3 – progressive conditions w/out curative, treatment is purely palliative, but may extend life : muscular dystrophy 4 (largest) – not progressive, but render children vulnerable to life-limiting complications – cerebral palsy

30. Palliative Care and Population Health Programs • Some health systems around the country have developed population health programs (e.g., complex disease management, super-utilizer) to better manage sub-populations and to reduce costs • Incorporate palliative care as strategy to mitigate late-life high utilization and spending • Requires cultural change within health system

31. Transitions program (Dan Hoefer, MD): • In-home pt and family education • Evidence-based prognostication • Caregiver management • Advanced care planning • Over 50% reduction in ER visits and admissions

32. Crozer-Independence Blue Cross Medicare Advantage SU Program • Health system-insurer partnership to lower costs • Launched January 2014; renewed for 2nd year • As of 8/15, team saw 20patients; avg age=80 • Dxs: CHF, COPD, DM, dementia • Strong emphasis on palliative care; social determinants

33. Crozer-IBC (cont.) • 50% reduction in hospital admits • 80% reduction in OBS • 45% reduction in LOS • Increased pt and family satisfaction • Probably keeping pts alive longer—may lead to increased costs eventually

34. Session Evaluation Please complete and return theevaluation form to the classroom monitor before leaving this session. Thank you!