How About the Family?

Reference: Walsh: Palliative Care 1st 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


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


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


Spheres of Concern


Spheres of Concern


Spheres of Concern


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.


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



• Progressive conditions for which treatment is exclusively palliative– Genetic diseases–Metabolic disorders



• Conditions requiring intensive long-term treatment but that are ultimately fatal– Immunodeficiency– Cystic fibrosis– Respiratory failure–HIV– Renal failure–Muscular dystrophy



• 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


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


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.



• 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.



• 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.


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



• 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



• 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


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.


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.


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


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

true wishes.


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.


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


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.


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


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.


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


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


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



• 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



• 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

Documents

How About the Family?