Introduction to Pediatric Palliative Care

1. Introduction to Pediatric Palliative Care C. Vadeboncoeur MD FRCPC 1 May 2014

2. Objectives At the end of the lecture the students will be able to: • Define the different categories of life-limiting illness in children.   • Describe differences between pediatric and adult palliative care. • Discuss the multidisciplinary approach to care which benefits the child and family when life‐limiting illness is present. • Recognize the components involved in care of a child with life-limiting illness from the time of diagnosis (including antenatal diagnosis), throughout the life of the child, the death of the child and the bereavement of the family. • Identify the challenges (societal, professional and personal) which arise when caring for a dying child.

3. Disclosure • The presenter has no financial disclosures

4. World Health Organization • The goal of palliative care is the achievement of the best quality of life for patients and their families, consistent with their values, regardless of the location of the patient

5. ACP and RCPCH • Palliative care is an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite, and care following death and bereavement Joint Working Party of the Association for Children with Life Threatening or Terminal Conditions and their Families (ACT) and the Royal College of Paediatrics and Child Health (RCPCH)

6. Palliative Care is NOT • Giving up • Abandoning care • With holding comfort measures • Accelerating death • Euthanasia

7. Children are NOT Little Adults Adults Children Smaller numbers Cancer, degenerative, genetic abnormalities Other organs healthy Care can be life-long Development influences care • Large numbers • Primarily cancer • Pre-existing medical conditions • Length of care usually short

9. Which child(ren) would benefit from Palliative Care involvement? A 13 year old boy with spastic quadriparesis and cerebral palsy experiencing recurrent aspiration pneumonia A newborn with an undiagnosed metabolic disease causing intractible seizures A 15 year old boy with Duchene’s muscular dystrophy who is considering noninvasive ventilatory support. A 10 year old girl with relapsed rhabdomyosarcoma All of the above

10. Which Children May Benefit? • Life threatening conditions for which curative treatment may be feasible but can fail. Children in long term remission or following successful treatment are not included • Includes children with cancer or awaiting organ transplantation

11. Which Children May Benefit? • Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities • Includes children with some neuromuscular diseases, severe cystic fibrosis

12. Which Children May Benefit? • Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years • Includes children with metabolic disorders, progressive neurological degenerative diseases and those diagnosed antenatally

13. Which Children May Benefit? • Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death • Includes children with cerebral palsy with progressive respiratory failure

14. Course of Illness in Pediatrics Unpredictable disease course

15. Pediatric Palliative Care Team • Multidisciplinary team including administration, nurses, physicians, social worker, child life worker, bioethicist, pharmacist, volunteers, spiritual support with many consultants as needed

16. Responsibilities of Team • Education • Students of all disciplines, hospital staff members, community outreach • Research • Expert clinical care, advice to other caregivers

17. Components of Pediatric Palliative Care • Respite for families of children with high care needs • At hospice • Pain and symptom management • Transition from hospital to home • End of life care • Bereavement support, including perinatal bereavement group • Antenatal support for couple with intrauterine diagnosis of severe anomalies

18. Clinical Settings… • Hospital/Institutional care • CHEO and other regional referral centers • Community care • Roger’s House • In-home acute palliative care and surveillance

19. What is the Most Common Troubling Symptom as End of Life Approaches? Constipation Loss of appetite Dyspnea Pain Fatigue

20. Respite Care • Respite - definition • A short period of rest or relief from something difficult or unpleasant. • A short delay permitted before an unpleasant obligation is met or a punishment is carried out. • Respite Care (wikipedia) • provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home

21. Respite at Roger’s House • Emergency Respite • Care at a time when family would find it very difficult to provide care (ie death in the family, parent needs procedure) • Guaranteed Respite • Days when family can count on respite being available (unless child has acute illness) • As available Respite

22. Transition From Hospital to Home • Often child has complex needs as a baseline • Change in care (Gtube, tracheostomy, spinal fixation) • Time for families to reinforce care • May also facilitate rest prior to child coming home

23. Morphine is Proven to be Beneficial for Which Symptom(s)? None of the above Constipation Pain Dyspnea A and C

24. Pain and Symptom Management • Fatigue • Pain • Dyspnea • Poor appetite • Nausea and vomiting • Constipation and/or diarrhea

25. Fatigue • Commonest end-of-life symptom • Not often identified specifically • Physical, psychological and social impact on quality of life • Many contributing causes (disease, treatment, poor nutrition)

26. Fatigue in Children • Children – physical sensation • Adolescents – physical and mental tiredness • Parents and staff – interferes with ability to participate in activities • Physical, emotional and mental changes

27. Management of Fatigue • Correct cause if possible • Exercise • Support • Sleep • No medications proven effective in children

28. Pain • World Health Organization pain ladder as in adults • Regular administration • Simplest route possible • Choice of medication child dependent • Dosing based on weight and effect

29. Dyspnea • Look for underlying causes and correct if able • Treatment • Find most comfortable position • Improve air circulation, fan • Use a humidifier • Lower room temperature • Stop smoking • Provide background information about dyspnea

30. Treatment of Dyspnea • Management of anxiety • Oxygen if hypoxic or appears to help • Opioids are of proven benefit • Benzodiazepines may be of benefit

31. Poor Appetite • Eating and food have important meaning for patients and families • Anorexia and cachexia can have negative impact on Quality of Life beyond nutritional compromise alone • Mealtime has cultural, emotional and religious significance

32. Treatment of Anorexia • Small meals • Comfortable environment • Support for emotional distress • Routine mouth care • Discontinue medications causing appetite suppression if possible

33. End Of Life Care • Holistic approach • Location of choice (home, hospice, hospital) • Description of gradual shut down of body • Attention to symptoms and support to family members

34. What does end of life look like? • Loss of muscle strength, limiting activities • World becomes smaller • Loss of appetite/feeding intolerance • Decreasing or holding feeds may improve comfort

35. As end of life approaches • Confusion, delirium (may not be able to detect) • Dehydration, renal failure • Respiratory changes leading to pauses and apnea • Rapid, weak pulse

36. Bereavement Support • Biweekly meetings for family members who have lost a child • Adult and sibling groups • Perinatal loss group • Individual counseling also available • Anticipatory grief (monthly group for parents who have children living with life-limiting illness)

37. Antenatal Support • Woman/couple given in utero diagnosis of potentially lethal anomaly • Option of continuation of pregnancy with support • Assistance with decision making if live birth occurs • Options of care following delivery • Acute interventions, comfort care or a combination of both • Consistent with child’s condition and belief system of the couple

38. Challenges in Pediatric Palliative Care • Death fearing society • Children don’t die • Trained to cure, not to comfort • “You should change your name”