How About the Family?

1. How About the Family? • Serious illness creates stress and confusion for the pediatric patient and family • Parents • Become more protective out of fear

2. How About the Family? • Siblings • Lose physical and emotional availability of parents • Unable to share concerns with parents • Unable to express anguish with sick sibling • Afraid of their own health • Embarrassment  jealousy • Effect: developmental regression, academic failure, and social withdrawal

3. The Needs of These Families • To communicate the diagnosis • To establish goals of care • To reframe hope for families • To control physical symptoms (pain, fatigue, etc) • To relieve psychosocial and spiritual distress • Identify and treat depression and anxiety

4. Spheres of Concern

5. Spheres of Concern

6. Spheres of Concern

7. Pediatric Palliative Care, Anyone? • Take away the misconception • Palliative care is not only for the dying • Palliative care relieves the suffering and improves the quality of life of both the living and the dying.

8. Indications for Palliative Care • Diagnoses suitable for consultation by the pediatric palliative medicine team • Conditions where curative treatment is available but may fail • Poor prognosis • Severe or congenital heart disease

9. Indications for Palliative Care • Progressive conditions for which treatment is exclusively palliative • Genetic diseases • Metabolic disorders

10. Indications for Palliative Care • Conditions requiring intensive long-term treatment but that are ultimately fatal • Immunodeficiency • Cystic fibrosis • Respiratory failure • HIV • Renal failure • Muscular dystrophy

11. Indications for Palliative Care • Conditions involving severe non-progressive disability and consequent complex medical conditions with complications that may be fatal • Prematurity • Cerebral palsy with recurrent infection • Hypoxic or anoxic brain injury • Neurological sequelae of infections or trauma • Brain malformations

12. The Difference Between Adult and Pediatric Palliative Care • Chronically ill pediatric patients require palliative care that works concurrently with the curative treatment • They are not actively dying, but have many concurrent diagnoses not found in adults

13. Care of Chronically IllPediatric Patients • Edmarc Hospice for Children (1978) • Parents were largely unwilling to stop disease-oriented treatment even if only a remote chance existed that their child’s life could be saved.

14. Care of Chronically IllPediatric Patients • Important: The patient is a child with a serious illness, rather than an ill patient who happens to be a child • Identify and clarify realistic goals of the child and family • Identify a child’s and a family’s hopes, worries, fears, and concerns.

15. Care of Chronically IllPediatric Patients • The child deserves a say as to how he spends his life (if feasible). • The family and other members of the team should be realistic, innovative, and creative in giving the best avenue for care possible.

16. School : A Neglected Resource • School may give the patient a sense of satisfaction of participating in normal child activities • The child is able to socialize with peers • The child continues to develop and reach small personal goals

17. School : A Neglected Resource • Creates an opportunity for classmates and teachers to safely experience changes in their classmate / student – reassuring that they are not “at risk” for the same

18. School : A Neglected Resource • As for siblings, school becomes a place where they are recognized as unique individuals • The teacher can be an ally as to observe any changes in school performance or signs of behavioral problems

19. The Child’s Participation is Key • School-aged children with advanced illness should have opportunities to express their fears and concerns • Their understanding of their illness is always underestimated. • Children are actually more afraid of feeling and abandoned, rather than of dying.

20. The Child’s Participation is Key • Children are encouraged to be involved in creating goals to optimize outcomes. • Active listening by medical caregivers to understand the needs of the child.

21. Barriers to Care • Medical barriers • Medical complications of illness • Difficulty of prognostication • Parents and caregivers may reject essential care services in this situation – clinging to the potential curative value of the present management • Parents and caregivers may also lose hope that there’s no cure for the patient’s condition and that he is bound to die

22. Barriers to Care • Legal and Ethical Barriers • Eligibility to make a decision • The lack of and advocate for the child’s true wishes.

23. Barriers to Care • Financial Barriers • Treatment too costly • Lack of a properly planned health system for the patient and the family • Still is a difficult barrier to break through especially for the poor.

24. Barriers to Care • Barrier to Coordination of Care • Multispecialty cases = fragmented care

25. Creating a Care Program for the Pediatric Patient • Key elements • Flexibility and adaptability of the care plan • Availability in any care environment • Continuous availability of on-call services • Respite services • Pediatric-specific durable medical equipment and supplies • Pediatric-specific medications, infusions, and support services such as transfusion, radiography, and basic laboratory studies.

26. The Rest of the Framework • One that focuses on goals and outcomes • Collaboration with child and family to discover what is vital and meaningful • Explore all the goals possible for the child • Integration of palliative and curative care • Anticipatory care – continuous redefinition of goals after certain turning points

27. Influence of Illness on the Infant and Toddler • Infant • Forced separation from the mother • Pain from invasive procedures • Deviation from feeding and sleeping cycles • Toddler • Denial of potential independence, autonomy, and self-control • Issues of painand separation • Minimal concern in terms of death.

28. Influence of Illness on the Preschool Child • These kids take a literal meaning in words • They may develop of fear of sleeping and nightmares • Taking of illness as a punishment for something wrong that they did

29. Influence of Illness on theSchool-aged Child • Beginning logical thought • Awareness of the severity of their illness • Very sensitive to nonverbal clues • Open communication in these children is possible • May begin to worry about the integrity of their body

30. Influence of Illness on the Adolescent • Thinking becomes consistent with reality • May speculate on the implications of death • Early adolescents (11-13) • Magical thinking may still exist • Consequential thinking may also persist

31. Influence of Illness on the Adolescent • Middle adolescents (14-15) • Challenges authority figures • Risk-taking behavior • Their body is their own – difficulty to deal with issues regarding their body and their illness • Strong sense of inadequacy – the need for peer support

32. Influence of Illness on the Adolescent • Late adolescents (15-18) • They become more future oriented • Finalizing that sense of identity • However, self-image and self-esteem may still shatter • Independence versus dependence • Adolescents may become hostile and aggressive • The need for the caregivers to promote that sense of independence