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Pediatric Palliative Care: Enhancing Quality of Life for Children at the End of Life

Discuss the differences in end-of-life care for children, understand the domains of quality of life, roles in a pediatric palliative care team, and implications for the transition to palliative care. Identify techniques to promote an interdisciplinary approach.

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Pediatric Palliative Care: Enhancing Quality of Life for Children at the End of Life

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  1. Objectives • Discuss differences in EOL Care for Children • Understand the 4 domains of Quality of Life • Discuss roles in a Pediatric Palliative Care Team. • Discuss implications for the transition to palliative care. • Identify techniques to promote an interdisciplinary approach to children at end of life.

  2. Pediatric Palliative Care • Death of a child is viewed as outside the natural order of life. • Children represent hope, energy, and health • 53,000 Pediatric Deaths a year

  3. 18,989 Neonatal, 9538 Infant 24,519 ages 1-19 (~12,260 due to CCC) National Vital Statistics ReportNatthews & MacDorman, 2008 Child Deaths Children with Complex Chronic Conditions 644,593 – 1,652,802 Bramlett et al., 2008 10,743,211 – 16,528,017 Bethell et al., 2008 Children with Special Health Care Needs 82,640,086 US Census Bureau, 2008 Population of Children Under 18 Hellsten, 2009, in press

  4. Palliative Care Curative Focus: Disease-Specific Treatments Palliative Focus: Comfort / Supportive Treatments Bereavement Support

  5. Definition • “active, total approach to care, embracing physical, emotional, social, and spiritual elements. It focuses on enhancement of the quality of life for the child and support for the family, and includes management of distressing symptoms…” • Lantos JD, Arch Dis Child Fetal Neonatal Ed 1994

  6. Treatment Goals • Curative Focus & Palliative Care Focus • When should possibility of death be discussed? • Treatment goal becomes palliation • Focus of hope • successful palliative care • Focus on quality of life

  7. Core Concepts of Palliative Care/Hospice Care • Respect • Comprehensive care • Utilizing the strength of the interdisciplinary process • Care for the caregiver • Bereavement Support

  8. Core Concepts of Palliative Care/Hospice Care • Respect: • Family centered care • What is “family”? • Patient and family values / beliefs, cultural and spiritual perspectives • Assist patient and family in establishing goals (ongoing process) • patient / family preferences

  9. Core Concepts of Palliative Care/Hospice Care • Comprehensive care: • Do not abandon • Physical comfort • Emotional / spiritual support • Affirm the parental role • Support to other family

  10. Core Concepts in Palliative Care/Hospice Care • Interdisciplinary Team: • Accountable team • RN, MD, SW, Psychologist, Chaplain, Child Life, Volunteers • Incorporate Institutional / community resources • Seamless Care

  11. Core Concepts in Palliative Care/Hospice Care • Care of the Caregiver: • Demands on family • Physical, emotional, financial • Services available • 24 hour availability of help • counseling • Personal care assistance • Anticipate needs

  12. What is Quality of Life to Kids? Stakeholder Study—2003 JP DT Indicators For QOL • To be at home. • To be pain free. • To be loved. • To be a kid. • To do activities. • To have purpose.

  13. Model of Quality of life • Physical Well-Being • Psychological Well-Being • Social Well-Being • Spiritual Well-Being Ferrell, et al, 1991

  14. Physical Well-Being • Pain • Multiple other symptoms • Mobility • Equipment needs • Impact on family caregivers

  15. Psychological Well-Being • Wide range of emotions and concerns • Meaning of illness • Coping • Cognitive assessment • Depression

  16. Social Well-Being • Relationship/role description • Caregiver burden • Financial concerns • Impact on siblings

  17. Spiritual Well-Being • Religion and spirituality • Seeking meaning • Hope vs. despair • Importance of ritual

  18. Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Quality of Life Social Financial Burden Caregiver Burden Roles & Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence Adapted from Ferrell, et al. 1991

  19. Kids vs. Adults--- Differences in Hospice Delivery Differences in Patients- • Children are not usually legally competent to make decisions regarding their care • Children are in a developmental process that affects understanding and articulation of illness and health, life and death, loss and grief….

  20. Growth & Development

  21. Growth & Development

  22. Growth & Development

  23. Growth & Development

  24. Differences Cont… • May not have the verbal skills to describe needs. • Frequently protect parents and other significant persons at personal expense to themselves. • More often High Tech Medical cases

  25. Differences---Family Issues • Families often have other minor children, siblings to the patient, often there is difficulty communicating with them, involving them and maintaining family patterns. • Siblings stresses and burdens. • Grandparents….dealing with issues with their children as well. • Stress and burden of the child's disease tends to be lengthy. • Fears of home vs. hospital • Less reimbursement options and more financial strain

  26. Differences –Professional Caregiver Issues • May want to protect the child and family from the truth. • Sense of failure at being unable to “save” the patient. • May have out of date concepts about pain management for children. • May have own “baggage” that affects care. • May have Knowledge Deficits regarding pediatric care.

  27. Cont…. • Professional caregivers may have a strong sense of ownership of the child, to the exclusion of the parents, and may even assume that they know what is best for the child.

  28. Differences---Institutional/Agency Issues • Limited Reimbursement, additional funding must be secured. • Usually very high staff intensity • Need for special competencies in the management of developmental levels, family/sibling issues, and pain and symptom assessment • Different focus on bereavement care

  29. Cont… 5. Strong resistance among physicians to make a 6-month prognosis.

  30. Ethical Issues • Pain control • Phase I medications • Supplemental nutrition / hydration • DNR status • Teen decision making—Assent/Consent

  31. TheRole of Communication • Clear communication and encouragement of open discussion and shared decision making, when appropriate, can avert many ethical dilemmas.

  32. Communicating With Dying Children • Goals 1. Try to understand your own feelings. 2. Assess and meet the needs of the particular child. 3. Correct misconceptions. 4. Allow for fears. 5. Reduction of isolation.

  33. Recommendations: 1. Communicate with kids age appropriately and, in the language most comfortable to them. (Play is most usually the Universal Language for most kids) 2. Build and nurture trust. 3. Always be invited. 4. Empower children as much as possible. 5. Recognize when alone time is needed.

  34. The Role of the Social Worker • Provide emotional support and counseling to the patient and the patient’s family. • Help to build a community of support around the patient and his/her family. • Advocate for the patient’s needs. • Provide support and consultation to community professionals who are involved with the patient and his/her family.

  35. Role of the RN • Anticipate • possible side effects • Prevent • suffering through careful planning • Treatment • reduce symptoms and suffering

  36. Role of the RN • Promote • Opportunities to live fully • Advocate • for the child and family

  37. Role of the RN • Medical Management • Physical / emotional presence • Educator / resource (Knowledge is comfort. Ignorance is fear) • Respite • High tech management

  38. PalliativeCare Physician/Medical Director • Over sees the patients care plan/IDT • Conducts meetings with family to engage in Goal planning and care plan direction • Offers consultation to other physicians with regard to palliative care • Engages in pain and symptom management • Educates

  39. Role of Volunteers • Patient and family support through many avenues: • Listening • Playing • Home support, groceries, laundry ,yard work • Sibling work • Integral member of IDT

  40. Goals • Bring emotional and physical comfort • Identification and planning around medical, psychosocial, and spiritual issues • Help family identify their needs • Seamless care • Peaceful death with dignity

  41. Professional Boundaries • Honor family space • Physical and emotional • Recognize potential problems • Keep ego in check • Rely on team members for advice and support

  42. Self Inventory • Identify what you can offer • Know when to ask for help • Knowledge strengths / deficits • Emotional needs • Potential barriers to professional, objective care • Identify and use good stress relief strategies

  43. Self Inventory • Identify colleagues / friends who may serve as outlets for feelings / frustrations

  44. Care within the Dying Process • Identification of needs and honoring of wishes • Definition of roles • Managing of physical decline (pain and symptom management) • Advocacy for child and family

  45. Options of Care • Details of DNR (comfort bracelet) • Hospital / Home (both?) • Hospice • Supportive care • Respite for caregivers

  46. Needs Assessment • Interdisciplinary process • Prioritize needs • Comfort • DNR status • Wishes for time of death • Cyclical process

  47. Goals of Care • Partner with patient and parents • Educate and collaborate on treatment plan • Pain management plan • Side effects of medications • Child can sleep undisturbed by pain • Child is able to move with minimal pain • Child is pain free at rest • Child has own goals to complete prior to EOL

  48. Roles • Establish a chain of communication within the palliative care team • Be cognizant of patient and family needs and wishes • Define all clinician roles • Allow family to define their roles

  49. When Death is Near • Let families choices and decisions guide • Remember to honor sacred space for families • Honor all wishes possible with regard to personnel present • Calls to MD / Team • Have phone numbers readily available

  50. Interventions at Time of Death • Try to have contact with the funeral home ahead of time and discuss family wishes with regard to post mortem protocol • Give whatever time is needed. • Family may want to do post mortem bath / care

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