PALLIATIVE CARE IN PEDIATRIC PATIENTS

1. PALLIATIVE CAREIN PEDIATRIC PATIENTS AZIZA SHAD, MD AMEY DISTINGUISHED PROFESSOR OF NEURO-ONCOLOGY AND CHILDHOOD CANCER DIVISION OF PEDIATRIC HEMATOLOGY ONCOLOGY, BLOOD AND MARROW TRANSPLANTATION LOMBARDI COMPREHENSIVE CANCER CENTER GEORGETOWN UNIVERSITY HOSPITAL

2. INTRODUCTION • Until recently, the focus of medical training has been on the investigation, diagnosis and treatment of disease often at the expense of caring for pain and suffering of the child • Result: improved cure rates in cancer, cystic fibrosis and infectious diseases

3. MORTALITY RATES USA Age Group Number ‘03 %Change’79-’03 1-4 yr. 4,858 -48 5-9 yr. 3,018 -45 10-14 yr. 4,138 -32 15-19 yr. 13,812 -28 1-19 yr. 25,820 -38 Annual Summary of vital statistics-1997 & 2003; Pediatrics 1998; 102:1333-1349, Pediatrics 2005; 115:619-634 Adding in infants, > 50,000 children die every year in USA

4. THE CONSEQUENCES • More than 500,000 children continue to live with life-threatening, complex medical conditions • Increased suffering in children and their families • Unrelieved pain and other symptoms • Significant emotional and spiritual morbidity • Difficult care coordination • Limited care continuity • Inconsistent hospice care • Poor Medicare reimbursement • Lack of experienced health care practitioners

5. FACTS ON DEATH AND DYING • Wolfe et al in a recent study found that: • Most children who die of cancer experience substantial suffering (89%) in the last month of life • Fatigue • Pain • Dyspnea • The majority of children die in the hospital • Hospice care is a very small piece of end-of-life care for children • Is usually provided at home

6. CHILDREN STILL DIE • A different kind of care is therefore required! • CARE THAT TARGETS THE COMFORT AND WELL BEING OF THE CHILD, NOT THE DISEASE

7. PEDIATRIC PALLIATIVE CARE • Definition • Epidemiology of childhood death • Obstacles to providing palliative care • Specific aspects of palliative care • Relief of physical, emotional, social and spiritual suffering • Communication with dying children and their families • Preparation of families for the death of a child • Help with decision making • Bereavement

8. WHAT IS PALLIATIVE CARE? • It is the relief of physical, emotional, social and spiritual suffering in children and their families from the time of diagnosis to cure or death • Not restricted to ‘End of Life’ care

9. The American Academy of Pediatrics supports an integrated model of palliative care in which components of the program are introduced at the time of diagnosis, whether or not the outcome ends in cure or death.

10. OLD MODEL OF CARE ABRUPT TRANSITION TO HOSPICE D I A G N O S I S CURATIVE PALLIATIVE DD DEATH RELIEF OF SUFFERING PROLONGATION OF LIFE

11. NEW MODEL OF INTEGRATED CARE

12. AMERICAN ACADEMY OF PEDIATRICSUniversal Principles of Pediatric Palliative Care • Palliative care programs should be available for children with life-threatening diseases, not just those in whom death is imminent • Life-prolonging treatment and palliative care are not mutually exclusive • Care should be available to children whether they are at home or in the hospital • Interdisciplinary palliative care teams should be available for the child 24 hours a day • The unit of care is the child and family • Bereavement care should be available for families of children who die

13. WHO QUALIFIES FOR PALLIATIVE CARE? • All children with complex chronic conditions (CCC) qualify for palliative care services • CCC: any medical condition that lasts for at least 12 months (unless death intervenes) and involves one or several organ systems severely enough to require specialty care • Neuromuscular disease, cardiac abnormalities, renal failure, metabolic abnormalities, chromosomal abnormalities, cancer and blood disorders

14. WHAT CONSTITUTES PALLIATIVE CARE? Spiritual support Emotional support Comfort Symptom control Interpersonal Relationships and Communication Social support

15. WHO DELIVERS PALLIATIVE CARE? • Palliative care is multidisciplinary • Physician • Palliative care trained nurse /nurse practitioner • Social worker • Spiritual counselor • Child-life specialists • Psychologist • Family

16. ROLE OF THE PALLIATIVE CARE TEAM • Physical, emotional, spiritual and social support • Communication with the child and family • Guidance in decisions at end –of-life • Bereavement

17. WHERE IS PALLIATIVE CARE DELIVERED? HOSPICE HOSPITAL PATIENT HOME CARE OPD

18. Hospice Philosophy of care for a terminally ill child; focused exclusively on comfort for whatever time remains Can be delivered at home, in hospital, a dedicated hospice unit Level of care defined and reimbursed by health care insurance Palliative care Comfort-oriented care with broader applications Not reserved exclusively for the terminally ill child Appropriate for those in transition from curative to hospice care, or still receiving curative or life-prolonging therapy HOSPICE AND PALLIATIVE CAREAre they the same? Most children are not enrolled in hospice programs because such programs require for-going life prolonging therapy, emergency department visits and hospitalizations

19. BARRIERS TO PEDIATRIC PALLIATIVE CAREPERCEPTION OF PEDIATRIC HEALTH CARE PROVIDERS • Survey: 117 nurses and 81 physicians • Commonest Perceived Barriers: • Uncertain prognosis 55% • Cure versus palliative care • Family not ready to accept incurable condition 51% • Language barriers 47% • Time constraints 47% • Frequent barriers: 30% • Family preferences for more life-sustaining treatment compared to staff members • Staff shortages • Problems with communication between family and staff, within staff regarding treatment goals • Insufficient education in pain and palliative care • Absence of a palliative care team Kramer et al

20. Pain Dyspnea Excess secretions Seizures Oral symptoms Bleeding Nausea and vomiting Psychological distress Swallowing difficulties Cough Muscle spasm PALLIATIVE CARE IS RELIEF OF PHYSICAL SUFFERING

21. PAIN AND PALLIATIVE CARE • 80% of cancer patients have pain 60% have enough pain to require opioid analgesia Irene Higginson (1998)

22. Pain management • Understanding of the pediatric doses • Use of the analgesic ladder • Keep the approach simple and consistent • use the oral and sublingual route in most cases • Work with the child and the family to choose medication to ensure compliance

23. Cancer Pain Management • 80-90% of cancer pain can be relieved relatively simply by WHO guidelines • Knowledge of treating uncomplicated pain is improving worldwide • 10-20% remains difficult to treat using simple pharmacologic approaches

24. OPIOIDSINPALLIATIVE CARE

25. Global Consumption of Morphine 1981-2000 Stjernsward & Clark, 2004

27. India 0.0769 (2001) Tanzania 0.0259 U.S. 45.0822 PAKISTAN 0.0551 PAKISTAN 0.0551 Nepal 0.0010 Saudi Arabia 0.5323

28. “In areas such as the pharmacodynamics of opiates, where good data already exists, it remains unacceptable to have children suffer because of misperceptions and incorrect assumptions about appropriate drug use” Liben. Journal of Palliative Care. 12(3):24-8, 1996

29. SOME FACTS ABOUT MORPHINE • If a country has a supply that includes • 30% IR morphine • 60% SR morphine • 5% parenteral morphine • 5% other opioids • The majority of the patients can be kept reasonably pain free • Oral morphine solution (generic) is the least expensive opiate available today

30. Barriers to Delivery of Palliative Care in Developing Countries • Lack of services • Poverty & Stigmatization • Limited education • Unrealistic fears regarding opioids • Inadequate access to healthcare • Poor governmental policies regarding end-of-life care Inability to access opioids and other pain medicine

31. No specialized Palliative care team patients No Government support Overburdened oncologist Poor access to morphine Unrecognized specialty Lack of Training in Medical school Few hospices and Trained nurses

32. PALLIATIVE CARE IS RELIEF OF SOCIAL, EMOTIONAL AND SPIRITUAL SUFFERING • Social isolation – separation from peers, friends • Child-life specialists, teachers • Emotional issues – anxiety about disease, death and depression • Play therapy, art therapy, music therapy • Psychologist, psychiatrist • Anti anxiety medication, anti depressants • Spiritual issues • Seriously ill children should undergo a spiritual assessment

33. PSYCHOSOCIAL ASPECTS OF PEDIATRIC PALLIATIVE CARE • Communication with child and family • Siblings • Talking about death • Preparing the family for dying • Bereavement for family • De-briefing for staff

34. COMMUNICATING WITH CHILDREN • Children are often told little about their illness • to protect them from fear and feeling of being overwhelmed • cultural issues, family hierarchy, relationships among family members influence decisions on how much to tell • younger children have limitations in reasoning • Most children know when something serious is going on • over time experience similar distress as older more informed children • figure it out themselves • non disclosure tends to make them feel isolated

35. TALKING TO CHILDREN WHO ARE DYING • One of the most daunting aspects of palliative care is talking to a terminally ill child • Should the child be told? • If so, by whom and how much? • Challenges: • Children’s concept of death changes over time • Highly variable from child to child • This information should be used to adjust our approach to the child and guide the family

36. TALKING TO CHILDREN WHO ARE DYING • Studies have shown: • Dying children fare better when they know what is happening to them • Dying children often know that they are dying, whether or not they have been told • Children not informed of the gravity of their illness, feel isolated and alone • Physician may not necessarily be the best person to talk to the child about death • Children may benefit from concrete information about the actual and physical process of dying • Some children may not want to talk about dying • Children give clues through play, drawings, dreams and reference to family members and friends who have died

37. Angel

39. Moving van

40. SIBLINGS ‘THE FORGOTTEN FAMILY MEMBERS’ • Siblings of chronically ill, dying children are at risk of becoming forgotten • Siblings feel isolated • Parents frequently are absent • Feel their own needs are no longer a priority • Siblings are at high risk • Subsequent school problems • Problems with parent-child relationships • Psychological and social problems following their sibling’s death

41. GUIDELINES FOR ASSISTANCE TO SIBLINGS OF CHILDREN WHO HAVE CANCER • Include sibs in discussions of care from time of diagnosis through death of child, and beyond • ‘Protecting’ sibs by excluding them may cause long term harm • Sibs should be included in discussions of end-of-life care • Sibs should be included in funeral planning • Resources should be made available to support sibs through their grief and bereavement

42. KEY ISSUES TO BE ADDRESSED • Opioids • Education and Training • Implementation of Palliative Care Services

43. IMPLEMENTATION OF PALLIATIVE CARE • Centers of Excellence • Regional hospitals • Primary Health care centers • Community services – home health care services

44. EDUCATION AND TRAINING • Identify leaders in education • Deans of medical, nursing, pharmacy and social work schools • Identify target audiences to ↑ awareness • Media, public, spiritual leaders, patients and families, medical personnel Promote media and public advocacy • Introduce palliative care in medical and nursing school curriculae • Palliative care experts • Visiting experts • Specialized in and out of country training • Educate family caregivers

45. COMMUNICATION SKILLS TRAINING IN ONCOLOGY • This is where Informatics can play a role • Undergraduate courses in medical school and residency programs • Observing more experienced colleagues in clinical situations • Videotaping actual encounters and evaluating them later • Role playing • Interactive workshops

46. ‘Stop! Don’t run away. I am scared. Talk to me. I don’t know what its like. You see – I’ve never died before!’ Translated from Arabic- courtesy Dr Brown

47. THANK YOU!