PEDIATRIC PALLIATIVE CARE SUSTAINING GAINS AND TAKING SUCCESS TO A HIGHER LEVEL

1. PEDIATRIC PALLIATIVE CARESUSTAINING GAINS AND TAKING SUCCESS TO A HIGHER LEVEL Susan Pinckney, LCSWR Director of Social Work & Related Services Alice Olwell, RN , BSN, HNC, REIKI Master Manager of Complementary Care Collaborative for Palliative Care April 3, 2014

2. OBJECTIVESDescribe dynamic sustainable components of a Pediatric Palliative Care Program. Define and implement key quality initiatives to access program effectiveness and sustainability.Define methods for assessing and fulfilling the ongoing educational needs of staff, families and resident’s within a palliative care framework. Collaborative for Palliative Care April 3, 2014

3. Sunshine Children’s Home is a 54-bed facility located 45 minutes north of NYC in Ossining, NY. Our Home specializes in the care and treatment of medically complex children who require post acute, rehabilitative and/or palliative care. • The goal of Sunshine Children’s Home is to create a loving and supportive environment that provides the highest level of pediatric care for children with special needs. • We are committed to treating children with dignity, compassion, and respect within a resident and family-centered approach. SUNSHINE RESIDENTS • NEWBORN THROUGH 21Average AGE= 8 years • LOS = 2.98 years (6 wks - 10 years) • Palliative Service = 26 • Deaths 2009-2013 = 13 Collaborative for Palliative Care April 3, 2014

4. MODELS OF CARE • Palliative Care Consultation Service • Hospice-Based Palliative Care Consult Services • Integrated Palliative Care • Hospice Care Contracts Collaborative for Palliative Care April 3, 2014

5. Sunshine’s TEAMS Management Housekeeping Facilities Faithful Journeys Nursing Rehabilitation Quality of Life Volunteers Social Work Medicine Child and Family Behavioral Health External Liaisons Child and Family Therapeutic Activities Complementary Care Nutrition School Pain Management Ethics Collaborative for Palliative Care April 3, 2014

6. INTEGRATED MODEL OF CARE Interdisciplinary team approach to planning and care. Offers care, support and guidance to children and their families affected by a life-threatening or life-limiting illness. Provides physical, emotional and spiritual services within a holistic and family and resident- centered care framework. Collaborative for Palliative Care April 3, 2014

7. Integrated Model of Care • Components of palliative care are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death. • Time of death is often difficult to predict. • Aspects of an integrated palliative care approach may prove beneficial when provided early in the course of a child's illness. • As the disease progresses and curative therapies are no longer effective, palliative treatment will intensify. • Interventions are designed to reaffirm life by offering the kinds of services that help a child enjoy a life of quality and not hasten or postpone death. Collaborative for Palliative Care April 3, 2014

8. Supporting a Family through Transitions in Palliative Care Curative Focus Reprioritizing treatment focus Care of child and family at the end of life Bereavement Support From acute care to chronic care Palliative Focus Family understanding of child’s life, death, and the care he/she received Collaborative for Palliative Care April 3, 2014

9. Pediatric Palliative Care Program A standardized multidisciplinary clinical pathway based on three (3) levels of care. Levels of care are assigned to each child and are driven by the time dimension of the prognosis and increased needs for palliative care interventions. Levels of service are fluid with changes in the child’s condition and family needs. The goal is to deliver required care “upstream” (i.e., from Level 1 to Level III) in addition to end-of-life care. Collaborative for Palliative Care April 3, 2014

10. Levels of Palliative Care Level I Progression of Illness Level III End-of-Life Care Chronic illness with progression of symptoms and loss of function and/ or physical decline. Examples of disease process may include: HIV/AIDS; cancer; genetic disorders; solid tumors; progressive myopathies; metabolic disorders; severe TBI, sev ere neurological impairment. Life-limiting or terminal illness; anticipated death within 6 months. Examples may include progression of the diseases in Level I; multiple congenital anomalies; certain chromosomal anomalies. Anticipated death is imminent, within 2 weeks. End stage illness; Progression of diseases in Level II. Level II Life-Limiting Illness Collaborative for Palliative Care April 3, 2014

11. Structure of Palliative Program • COMMITTEE • Leadership , clinicians and front line staff • Provides oversight from a quality lens, programmatic direction, provides resources to team • Meets Quarterly • CORE Team • Directors (Medicine, Nursing, Social Work, Complementary Care, Therapeutic Activities/ • Quality of Life) • “Work Group”- implements ‘actionable’ items proposed by Committee • Membership can expand based on initiatives • Meets every 3 weeks • CARE PLANNING Team • Interdisciplinary • Identifies residents for services, meets with family to identify goals of care • Direct service providers • Ongoing collaborations • ETHICS COMMITTEE • Medical Director, Administrator, Department Directors, Nurse, • Rehab Therapist, Spiritual Advisor • Ad hoc /issue-driven meetings Collaborative for Palliative Care April 3, 2014

12. PROGRAM COMPONENTS • Complementary Care/Pain Management • Reiki, Aromatherapy, Massage Therapy, Therapeutic Touch, Expressive Arts • Faithful Journey’s • Spiritual Support and assistance with any specific religious and/or cultural requests • End of Life Preparations • Peaceful Dying Plan, Gentle Transitions Brochure, Wish Fulfillment, • Environmental Modifications • Post Death Rituals • Keepsake Gift to You Program, Family Memory Bags, Lying of Quilt, Candle Lightening, Reflections Gatherings, Annual Memorial Services Collaborative for Palliative Care April 3, 2014

13. Complementary Care Program Planned interventions designed to improve the Quality of Life. Combines the body, mind and spirit to treat and prevent illness, aid recovery, promote health, manage pain and reduce stress. Sunshine complements the traditional treatment plan with approaches such as guided imagery, music therapy, Therapeutic Touch, Reiki, pet therapy, relaxation, acupressure, and massage modalities. Focus is on maximizing a child’s comfort. Collaborative for Palliative Care April 3, 2014

14. Complementary Care Program • Provides an environment and services that promote the greatesthealing potential for children, families and staff • Provides focused time for comfort and relaxation. • Often includes physical touch via massage, holding, rocking or stroking. • Usually involves a peaceful environment with gentle lighting and soothing music or sounds. BENEFITS • Reduction of anxiety • Reduction of stress • Reduction of pain • Promotion of relaxation • Promotion of a sense of well-being Collaborative for Palliative Care April 3, 2014

15. Complementary Care Modalities • Reiki • Therapeutic Touch • Aromatherapy • Massage • Music Therapy • Harpist Collaborative for Palliative Care April 3, 2014

16. Complementary Care Programs Sunrise Salutations Peaceful Pause Happy Feet “Zen Zone” Collaborative for Palliative Care April 3, 2014

17. Pain Management in Pediatrics Comfort is ALWAYS our primary goal Pain is what the child says it is Pain meds around the clock vs PRN Pain Care Plans have to include all sources of pain Dependence vs. Addiction Morphine and Methadone Healing Environment Collaborative for Palliative Care April 3, 2014

18. Pain Management Assessment FLACC: Children < 3 years-old or non-communicative children Collaborative for Palliative Care April 3, 2014

19. PAIN MANAGEMENT INTERVENTIONS Farrell Bags Acubands “Sweet–Ease” LMX4 Insuflon catheters Non-pharmaceutical interventions Collaborative for Palliative Care April 3, 2014

20. FAITHFUL JOURNEYS • EMBRACING HOPE • Addressing the emotional & spiritual needs of residents and their families through the coordination of faith-based practices & traditions. • Needs identified through individualized SPIRITUAL ASSESSMENTS • ESTABLISHING Community Partnerships • Maintain or create Connections to Community • Positive Coping Strategies • FINDING MEANING Collaborative for Palliative Care April 3, 2014

21. End of Life Preparations • Peaceful Dying Plan • Gentle Transitions • Keepsake Gift to You • Wish fulfillment • (internal and external) • Environmental modifications Collaborative for Palliative Care April 3, 2014

22. End of Life Preparation DEVELOPING A PEACEFUL DYING PLAN THE GOAL IS TO PREVENT/RELIEVE SUFFERING, AND SUPPORT THE BEST QUALITY OF LIFE FOR CHILDREN AND THEIR FAMILIES RECOGNIZES EACH FAMILY SITUATION AS BEING UNIQUE HELPS FAMILIES IDENTIFY THINGS THEY CAN CONTROL ABOUT THEIR CHILD’S CARE FOCUSES ON THE UNIQUE NEEDS, HOPES, BELIEFS OF THE FAMILY ALLOWS FOR A THOUGHTFUL, NON-CRISES OPPORTUNITY FOR PLANNING Making Memories That Last A Lifetime Collaborative for Palliative Care April 3, 2014

23. Post Death Rituals Candle Memory Quilt My Keepsake Box Cards & Family Memory Bag Collaborative for Palliative Care April 3, 2014

24. Annual Memorial Memory Quilt Collaborative for Palliative Care April 3, 2014

25. SUNSHINE’S PILLARS OF QUALITY Use PDSA : program continuously evolving Respect for People- Palliative Care Team; family-centered care Professional Standards – with assigned roles, utilizing a clinical pathway, opportunities for training & certifications Seek Feedback & Manage-By-Fact : stakeholders are partners in care; listen to everyone’s “voice”; use DATA to initiate change Collaborative for Palliative Care April 3, 2014

26. QUALITY Staff Reflections Chart Reviews Satisfaction Surveys Quality Improvement Initiatives Collaborative for Palliative Care April 3, 2014

27. PROJECT ONE • COMPREHENSIVE CARE PLANNING TEAM • Advance Care Planning Discussions • Improve team dynamics around initiating ACP with families • Update Palliative Care brochure to include information on ACP, Goals of Care Discussions and A Natural Death • Develop a checklist for CCPT to be used as a guideline for team discussions and decision-making Collaborative for Palliative Care April 3, 2014

28. PROJECT ONE Collaborative for Palliative Care April 3, 2014

29. PROJECT TWO • COMFORT CARE ROUNDS • Monthly interdisciplinary rounds to review residents on Palliative and Pain service • 24 children on currently on roster • 8-10 children discussed each month • PROPOSED CHANGE • Shift from a “medically driven/care plan redundant process” → “bio-psycho-social- spiritual review” • Focus on Quality of Life domains • Increase participation of all disciplines → increase accessibility • Create actionable plans with accountability for follow-up Collaborative for Palliative Care April 3, 2014

30. IMPORTANT CONSIDERATIONS • Teams are not static but fluid, do not magically gel, go through stages of development and patterns, aspects of team behavior may emerge, resolve then re-occur • (staffing changes can have big impact on small teams) • Key to empowering team membership is to identify and support champions regardless of degree/discipline or department • (frontline staff (C.N.A., food service, teachers) are our experts) • Team forums must provide for time, space & support for meaningful comprehensive information exchange • (identify barriers and creatively remove them) Collaborative for Palliative Care April 3, 2014

31. PROJECT TWO • COMFORT CARE ROUNDS • TOOLS: • Written guidelines for team discussions • Questionnaire to obtain data on level of participation and perceptions re quality of discussions • ROLL-OUT: • 1- Palliative Committee : endorsement (March) • 2- CORE Team : refinement • 3- Leadership : buy-in • 4- Department Meetings: education • 5- Tools implemented at Rounds (April) : roll-out Collaborative for Palliative Care April 3, 2014

32. Comfort Rounds Questionnaire • Gathering Data Collaborative for Palliative Care April 3, 2014

33. Comfort Rounds Initial Data Interdisciplinary Team: Medicine , Nursing /CNA, Respiratory, Rehab , Social Work , Nutrition , Therapeutic Activities, Education Collaborative for Palliative Care April 3, 2014

34. PROJECT THREE • Noise Awareness Campaign (NAC) • OBJECTIVE: To create a more optimal healing environment through noise • reduction to a more acceptable level.” Collaborative for Palliative Care April 3, 2014

35. PROJECT THREE • Noise Awareness Campaign (NAC) • OUTCOMES: • RAISED AWARENESS • INCREASED SENSITIVITIES • FUN ≠ LOUD • NEXT STEPS: Collaborative for Palliative Care April 3, 2014

36. STAFF DEVELOPMENT PROMOTING A LEARNING CULTURE THROUGH EDUCATION INFORMIATION SHARING AND COMMUNICATION • CONSIDERATIONS FOR TRAINING • Implementation of training concepts requires support from Administration • Leadership needs to fully embrace the goals and methods of the training • Involve staff members in the planning and implementation of training • Methods should be consistent with the mission and philosophy of the organization • Accessible for frequent training and reinforcement • Vary presentation methods to keep people interested and excited. Collaborative for Palliative Care April 3, 2014

37. PROMOTING A LEARNING CULTURE THROUGH EDUCATION INFORMIATION SHARING AND COMMUNICATION • New Employee Orientation • Curriculum created/facilitated by DSW and Complementary Care RN • Use of storytelling as teaching method to communicate the impact employees efforts on a human level • Initiated in April 2013 • 52 new employees have attended the training • Revised in July 2013 with emphasis on role of Interdisciplinary Team Collaborative for Palliative Care April 3, 2014

38. Collaborative for Palliative Care April 3, 2014

39. PROMOTING A LEARNING CULTURE THROUGH EDUCATION INFORMIATION SHARING AND COMMUNICATION • II. Interdisciplinary Team Retreat/Training • Administrative support obtained • Off-site, half-day, transportation, catered • Sessions scheduled for May 2014 • 10-12 participants/session • Didactic, experiential, role play, case study & video support • Organized development team to create and implement curriculum • Medicine (NP) • Nursing • Social Work • Quality of Life • Therapeutic Activities • Parent perspective Collaborative for Palliative Care April 3, 2014

40. CURRICULUM TOPICS • Pathway Review • interventions, outcomes and measurements • Advanced Care Planning Discussions, Partnerships with Families • communication • Interdisciplinary Team • forming, sustaining, maintainingteam health • Compassion in Professional Care • therapeutic boundaries • Promoting Maximum Quality of Life • pain management • customs, religions • child-specific programming • Care from a Parents Perspective • Care of Self Collaborative for Palliative Care April 3, 2014

41. SUCCESSFUL OUTCOMES FOR THE TEAM APPROACH TO CARE • Inviting and inclusive team membership • Inter-dependency is valued • Clear objectives and shared goals • Consistent channels for candid and complete communication • Roles and responsibilities are understood • Flexible hierarchy is allowed with focus on the • knowledge & expertise of each team member • Pooling of training, skills, talents is norm in providing comprehensive • “whole person approach to care” • Goals of Care are in tune with the child and families needs and preferences Collaborative for Palliative Care April 3, 2014

42. Collaborative for Palliative Care April 3, 2014

43. We wish to thank…. Our special kids for teaching us the right combination of love, joy, patience and courage Our families for modeling the ideal and teaching us “how to get it right” Our staff for providing “care from the heart” , each and every day Collaborative for Palliative Care April 3, 2014

44. For more information about Address 15 Spring Valley Road Ossining, NY 10562 Phone Number 914.333.7000 Websitewww.sunshinechildrenshome.org Collaborative for Palliative Care April 3, 2014