Pediatric Palliative Care

1. Pediatric Palliative Care Justin Baker, MD Attending Physician Quality of Life Service Division of Palliative and End-of-Life Care Department of Pediatrics St. Jude Children�s Research Hospital

2. Objectives The issue Suffering and death The background The nature of suffering and goals of medicine The solution Palliative care Integration into mainstream of care

3. Mortality Rates

4. �What about Pain? Suffering? Quality of life?

5. Focus on the investigation, diagnosis and treatment of disease often at the expense of caring for pain and suffering Fox E. Predominance of the curative model of medical care. A residual problem. JAMA 1997; 278:761-783

6. A national crisis Unrelieved pain/symptoms Significant emotional and spiritual morbidity Ineffective communication Poor reimbursement Difficult care coordination Limited care continuity Inconsistent hospice care Deficient education

7. Central Issue The nature of suffering and the goals of medicine

8. Suffering The hidden aspect of human illness Results from a threat to our: Physical and psychological self Relationship with others Relationship with a transcendent source of meaning

9. Suffering Part of human nature Profoundly personal Threat to the integrity of personhood Endurable when meaningful Philosophic stance influenced by one�s educational, religious and cultural backgrounds

10. Cultural stance towards suffering �For the wise man of old, the cardinal problem of human life was how to conform the soul to objective reality, and the solution was wisdom, self-discipline, and virtue. For the modern mind, the cardinal problem is how to subdue reality to the wishes of man, and solution is a technique� CS Lewis The Abolition of Man

11. Evolution in medical thinking

12. Goals of Medicine

13. Skillful combination of roles

14. A solution Pediatric Palliative Care

15. What is Palliative Care? �The art and science of patient and family-centered care aimed at attending to suffering, promoting healing and improving quality of life�

16. What is palliative care? Comfort

17. What is palliative care? Interpersonal relationships

18. What is palliative care? Emotional support

19. What is palliative care? Social support

20. What is palliative care? http://www.cms.edu/graphics/The%20Spiritual%20Path.jpg Spiritual support

21. �You have not known grief until you have stood at the grave of your child� A. Lincoln

22. Totality of Personhood

23. Interdisciplinary

24. Goal directed

26. Professional sense of meaning We discover meaning in medicine by: the advancement of science and technology caring for the human being as a whole person addressing the mysteries of suffering and death

27. General barriers Lack of consistent definition of palliative care relevant to all cultures Emotional Defiance of the natural order when a child dies Provider sense of failure when a child dies Immeasurable parental distress at loss of a child Prognostic uncertainty

28. General barriers Diversity of illness, rarity of childhood death, little formal education of caregivers Absence of developmentally appropriate assessment tools No pharmacokinetic data for children taking symptom-relieving medications

29. General barriers Poor reimbursement for time Lack of universal health care coverage for children Fear of research in this population No palliative care network

30. Community barriers Geographic diversity Lack of reimbursement for critical services in the home i.e., psychosocial services Hospice limitations < 6 month life expectancy Lack of experienced pediatric clinicians Low daily reimbursement Not offered if other nursing services already involved with child

31. Hospital barriers May require ED visit Stay might be extended and care can be intensive � even if patient has declined intensive care Caregiver team New, less familiar Varying levels of experience Frequent changes Differing values

33. WHEN CHILDREN DIEImproving Palliative and End-of-Life Care for Children and Families (2002)

34. Patient Care National Consensus for Quality Palliative Care, Clinical Practice Guidelines for Quality Palliative Care National Quality Forum, Framework and preferred practices for palliative and hospice care quality (2007)

35. Education IOM Health Professions Education: A Bridge to Quality (2003) Deliver patient-centered care as members of an interdisciplinary care team, emphasizing evidence-based practice, quality improvement approaches, and informatics

36. Research IOM Crossing the Quality Chasm: A New Health System for the 21st Century (2001) Quality problems result from system failures

37. National priorities IOM Priority Areas for National Action: Transforming Health Care Quality (2003) Pain and symptom control Care coordination End-of-Life care

38. Quality palliative care Timely Right patient/time Patient-centered Based on goals and preferences Beneficial Safe, positive influence on process and outcomes Accessible and equitable accessible to all in need Effective Evidence based Efficient meet the needs of the patient

39. Integration of Quality Palliative Care Principles and Practices into the Continuum of Care The Individualized Care Planning and Coordination Model (ICPC)