Not Just for Dying Anymore:

1. Not Just for Dying Anymore: Integrative Pediatric Palliative Care for Children with Complex Chronic Conditions

2. PPC Timeline • 70’s • Ida Martinson – Home Care for Dying Children • Limited literature outside of Oncology • 80’s to mid 90’s • Small body of Pediatric Hospice Literature • Children’s Hospice International • 1998 -2013 • Significant increase in literature/Seminal Articles • Position Statements, Program Development • Educational Curriculum, Clinical Resources

3. Expansion of PPC Literature Number of articles PubMed Search Term

4. Progression of the Science of PPC 2010 2000 1990 RCTs, Reviews Clinical Medical Home 1980 Ethics, Futility Spirituality Program Dev Clinical Defined Population Told story Identified need HIV, NICU, Cancer, CF Expanded population Systems Cost Dying EOL Care

5. What does this mean? • PPC is establishing a body of knowledge • Distinguishes it as a distinct discipline • Demonstrates ongoing commitment to the field • Expanded populations of children in PPC • Allows for refinement and future development of knowledge

6. Early Vernacular • Hospice • End of Life Care • Palliative (Supportive) Care • Irreversible, Progressive, Terminal • Curative, Life-Prolonging, Comfort

7. Dichotomous Care Process Mutually Exclusive • Family • Forced Choices • No best option • Abandonment • Hope Curative ‘The Dying Point’ End of Life Care Docherty et al Ped Nurs 2007 • Health Care Providers • Prognostic Uncertainty • Family resistance • Challenge of changing course of care • Conflict around goals of care • Avoidance of emotionally charged situations • Relinquishing care to another team • Hope

8. Illness Trajectories

9. Complex Chronic Conditions of Childhood • Medical condition reasonably expected to last at least 12 mos • Involves several organ systems or one organ system severely enough to require specialty pediatric care and some period of hospitalization in a tertiary care center Feudtner, Digiuseppe, Neff 2003. BCM Medicine

10. Characteristics of Death from CCCC • Feudtner 2005 Washington State • 25% due to CCC • Rate of hospitalization increases as death draws near • Stable to increased deaths in infancy and increased deaths in adolescents and early adulthood

11. Characteristics of Death from CCC • Brandon et al J Palliative Med, 2007 • 2000 HCUP-KIDS database review • 56% to 61% occur in Hospital, 86% in ICU • CCCC more likely to die in Children’s Hospitals with longer LOS (10 days) and costs of ~$100,000 • General Hospital deaths primarily non CCC, shorter LOS (50% on day of admit) at ~$34,000 • Most prevalent CCC categories: <12 mos cardiovascular, respiratory, congenital/genetic 10-18 yrs Neuromuscular, malignancies

12. Development of Hospital PPC • Consult Service • Boston • Education Service • John’s Hopkins • Psychosocial Community Support System • Footprints • Home Care/Hospice • Buffalo

13. Dichotomous Care Process Curative Palliative Care End Of Life Positives Negatives Attempt to bridge gap between ‘curative’ and ‘palliative’ care Initially Oncology based Effort to ‘move upstream’ in disease trajectory Unclear Role Large population of children without active PCP leading care Limited workable community programs

14. ACT for Children ACT admissions, deaths, monthly census 11/99-4/01

15. ACT PPC Program Nov 99 – Dec 12 • Patient Consults – ~700 • Primary CNS Neuro – 34% • Oncology- 25% • Non-Neuro Genetic – 20% • Other – 10% • Neuromuscular – 7% • Congenital Heart – 5% • Pulmonary – 5% • Pain Management – 4% • Children under 3 comprised 50% of case load

16. Identifying the Population Served 4523 (1130 from CCC) 2011 TDSHS Vital Statistics Texas Estimates Child Deaths 125,139-166,852 Milligan & Burnside, 2001 Bramlett MD, Read D, Bethell C, Blumberg, Matern Child Health J, 2008 Children with Complex Chronic Conditions 1,251,391 – 1,390,435 Bethell, Read, Blumberg Newacheck. Matern Child Health J. 2008 Children with Special Health Care Needs 6,952,177 2011 Texas Child Census Population of Children Under 18

17. CCC Health Care Needs Healthy Child Primary Care Medical Home + Risk screening Subspecialty care Community/Ed Services CSHCN Medical Home + Multiple Subspecialty Svcs Care Coordination/Social Support Medical Decision Making Pain/Symptom Management Childhood CCC Medical Home + Multiple Subspecialty Svcs Care Coordination Medical Decision Making/Advanced Directives Pain/Symptom Management, Spiritual Support , Grief and Bereavement Care Dying Child

18. Impact of CCC’s on Family • Social Isolation • Financial burden • Family interpersonal stress • Parenting PLUS/Public Parenting • A journey through time

19. Unmet Needs • Informational Needs • Access to subspecialty and community services • Care Coordination • Social Support

20. CCC Across Health Settings

21. State of the System • Technological Imperative • The push for newer and better • Medical Goal vs. Life Goals • Societal Responsibility for Outcomes • Fragmentation • Multiple Sub-specialists • Niche Services/Sub-sub-sub contracting • Home Health • DME • Pharmacy • Infusion Therapy • Rehab Therapies

22. Leadership • Who’s in charge??? • Pediatrician • Sub-specialist • Parent • Communication child/family • Diagnosis • Prognosis • Anticipatory Guidance • Care Planning

23. Healthcare Utilization Cost • Medically Complex Children • Cohen 2012 - 15,771 children in Ontario over 2 years • Median of 13 outpatient physicians, 6 distinct subspecialists • 36% received home care services • 30 day re admits - 12.6% single CCC to 23.7% multiple CCC with TA Rehospitalization Home Care Physician Services • Total 2 yr cost - ~ $850, 000, 000 (Canadian); 32% of Pedi HC spending • Berry 2011 – 69,294 children admitted to 37 US hospitals 2003-08 • 2.9% of children – 4 or more readmits • Accounted for 19% of readmissions and 23% total inpt charges • $3.4 billion • CCC higher readmissions, used TA; had public insurance; non-Hispanic Black; admitted for problem in same organ system

24. PPC and Health Care • Gans 2012 California • Partners for Children • MC Waiver program – Hospice and Curative Services • 32% reduction in Hospital days; 35% reduction in cost • 11% reduction PMPM spending • 18 mo savings of ~ 1 million • Cost shift to outpatient medical visits and pharmaceutical costs • Improved Family QOL indicators • Improved sleep and confidence; decreased stress, worry

25. Changing Course There is nothing more difficult to plan, more doubtful of success, nor more dangerous to manage than the creation of a new system. For the initiator has the enmity of all who would profit by the preservation of the old system and merely lukewarm defenders in those who would gain by the new one. – Machiavelli – 1513

26. Health Care 2010 • New Buzzwords • Quality • Outcomes • Cost Effective

27. PPC - The New Vernacular • Family Centered Care, Medical Home • Restorative, Supportive • Care Coordination • Quality of Life • Transdisciplinary • Continuous through trajectory

28. Concurrent Care • Section 2302 of the Patient Protection and Affordable Care Act of 2010 (P.L. 111-148) A voluntary election to have payment made for hospice care for a child (as defined by the State) shall not constitute a waiver of any rights of the child to be provided with, or to have payment made under this title for, services that are related to the treatment of the child’s condition for which a diagnosis of terminal illness has been made.

29. Concurrent Care • What it Does: • removes barrier to enrollment of children on hospice services • CMS believes that the new provisions are “…vitally important for children and their families seeking a blended package of curative/life prolonging and palliative services” NHPCO Implementation Toolkit pg 4

30. Concurrent Care • What it Doesn’t Do: • Change the 6 month Hospice certification of terminal illness requirement • Provide benefits outside of those outlined in the State Plan Amendment • Change the required service components of Hospice • If it provides pain and symptom relief of a terminal condition, then it should be included in Hospice Benefit

31. Integrative Pediatric Palliative Care Family Centered Care Lived Experience HC Goals Impact on Child & Family Communication/Information Shared Decision Making Care Coordination Maximizing Potential Maximizing Comfort Screening Diagnosis Treatment Ethical Decision Making EOL Care Chronic Care Management Adult Care

32. Care of Children with CCC’s • Flexibility to serve wide range of CCC’s • Perinatal care to transition from pediatric to adult services, end-of-life care, bereavement • Specific to sub-population needs • Malignancy vs Pulmonary vs Neurodegenerative vs N/PICU • Collaborative relationships, Integrated Care • Health Care Team • Community Health Care Providers • Child and Family • Creates forum for Shared Decision Making, Care Planning • Ethical Decision Making process • Individualized to child/family

33. Child and Family Experience • Understanding their story • Impact of Illness • Relationship with Health Care Professionals • Communication (parent, child, siblings) • Respect vs Distrust • Earned Intimacy • Values, Beliefs, Hopes

34. Communication • Guiding Ethical Principles • Veracity, Autonomy • Parent preferences • Barriers • Parent-HCP • HCP-HCP

35. Care for Children with CCC’s • Moves through illness trajectory with child/family • Moves across care settings • Facilitates Shared Decision Making • Transdisciplinary care coordination • Highly dependent on communication • Dynamic, ongoing, pre-emptive, anticipatory • Identify and alleviate sources of preventable suffering/distress and improve Quality of Life

36. Shift in Location of Care • Shift from Hospital to Community • CCC with TA - >$100,000 month • Higher care demand on family • Substantial Unmet Needs • Access to needed community base care • Nursing • Therapists • Competent community caregivers • Disparity in reimbursement • Medicaid vs Private Ins

37. Viable Models of Care • Medical Home • Pediatric Palliative/Supportive Care • Home Care/Hospice • Case Management

38. Challenges • Integration across sites of care • Establishing lines of communication, collaboration • Cost effectiveness

39. The Medical Home • Key Components (AAP) • Accessible • Continuous • Comprehensive • Family Centered • Coordinated • Compassionate • Culturally Effective

40. Palliative Care Medical Home • Promotes quality of life through enhanced communication and medical decision making based on individual child and family values. • Shared decision making • Focused on illness experience, family values • Establishes understanding of prognosis, goals of care • Attention to sources of preventable suffering • Multifaceted, Interdisciplinary

41. Hospice • Community based program that uses an interdisciplinary team of health care professionals to provide comprehensive palliative care for terminally ill patients and their families • Significant limitations for pediatric population

42. Barriers to Palliative Care • Still linked to end-of-life care, leads to late referral/intervention • Limited number of competent providers • Fragmentation, limitations on necessary supportive services

43. Home Care • Intermittent acute care nursing visits • Private duty nursing care • CCP • MDCP • Consolidated Waiver Program • Private Insurance • Home Based Therapies • Infusion services, radiology, swallow studies, DME

44. Barriers to Home Care • Large waiting lists for waiver programs • Variations in Private Insurance benefits • Nursing shortage • Disparity between private and public insurance coverage/programs • Social services reimbursement

45. Case Management • Case Management • Cost Containment • Utilization Review/Care Authorization • Referral Resource • Discharge Planning • Not necessarily tied into medical plan of care

46. Care Coordination • Hallmark of Pediatric Palliative Care and Medical Home Model • Care coordination is associated with reducing ER and hospitalizations, lowering cost and improving family satisfaction • Challenges

47. Collaboration • Interprofessional • Transdisciplinary care • ‘Many hands make light work’ • Challenge in moving from hierarchical HCT structure to collaborative structure • Interagency • Hospital • Outpatient settings • Community Agencies • Local emergency and law enforcement • Benevolent organizations

48. Case Study • Child with rare metabolic disorder – fatal in first year of life • Mom 14, pregnancy result of consanguineous relationship with older cousin, placed in foster care with child • Involved agencies/individuals • CPS (mother and child) • Court • Foster Care Placement Agency • Foster family, Biological family • Home Care • Hospice • Coordination/Collaboration • Collaborative care planning meeting • Established roles and requirements for each entity • Communication notebook – symptom management changes • Unanticipated – on-call Admin for Foster agency; notification of military police

49. Integrative Pediatric Palliative Care • A process of care for children and families living with complex medical conditions that • Provides cost effective state of the art medical care • Focuses on quality of life within illness process • Is comprehensive, coordinated, individualized • Anticipatory • Care based on child/family preferences and values • Maximizing child and family resources, strengths • Focused on quality of life, child/family goals • Creates sense of success for child/family/parent and HCT