Reference: Walsh: Palliative Care 1 st ed.(2008) How About the Family? Serious illness creates stress and confusion for the pediatric patient and family Parents – Become more protective out of fear

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) Spheres of Concern

Reference: Walsh: Palliative Care 1 st ed.(2008) Spheres of Concern

Reference: Walsh: Palliative Care 1 st ed.(2008) Spheres of Concern

Reference: Walsh: Palliative Care 1 st ed.(2008) 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.

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) Indications for Palliative Care Progressive conditions for which treatment is exclusively palliative – Genetic diseases – Metabolic disorders

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) Care of Chronically Ill Pediatric 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.

Reference: Walsh: Palliative Care 1 st ed.(2008) Care of Chronically Ill Pediatric 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.

Reference: Walsh: Palliative Care 1 st ed.(2008) Care of Chronically Ill Pediatric 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.

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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.

Reference: Walsh: Palliative Care 1 st ed.(2008) 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.

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) Barriers to Care Legal and Ethical Barriers – Eligibility to make a decision – The lack of and advocate for the child’s true wishes.

Reference: Walsh: Palliative Care 1 st ed.(2008) 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.

Reference: Walsh: Palliative Care 1 st ed.(2008) Barriers to Care Barrier to Coordination of Care – Multispecialty cases = fragmented care

Reference: Walsh: Palliative Care 1 st ed.(2008) 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.

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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 pain and separation – Minimal concern in terms of death.

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) Influence of Illness on the School-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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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

Reference: Walsh: Palliative Care 1 st ed.(2008) 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