Curriculum Vitae

 Nama : dr Endang Windiastuti SpA(K), MM

(Paed)
 Institusi : Universitas Indonesia
 Pendidikan
– S1 : FKUI, 1979
– Sp1 : FKUI, 1988
– Sp2 : FKUI, 2002
 Jabatan : Staf medis Div. Hematologi-Onkologi IKA FKUI-RSCM, SPS
Sp2 IKA FKUI, Kolegium IKA, Pemimpin Redaksi Sari Pediatri
 Organisasi : IDAI, POI, SIOP, ISTH.
 Endang Windiastuti
Departement of Child Health
Universitas Indonesia
Education
• Medical doctor : Faculty of Medicine, Universitas Indonesia, 1979
• Pediatrician : Department of Child Health, Faculty of Medicine,
Universitas Indonesia, 1988
• Consultant : Department of Child Health, Faculty of Medicine,
Universitas Indonesia, 2002
Position
• Medical staff of Hematology-Oncology Department
Department of Child Health, Faculty of Medicine, Universitas Indonesia
Cipto Mangunkusumo Hospital
• Indonesian Pediatric College
• Chief Editor of Sari Pediatri
Organization
Indonesian Pediatric Society, ISTH, SIOP, Indonesia Society of Oncology
Palliative Care in Childhood Cancer:
future perspective

Endang Windiastuti
Division of Hematology-Oncology
Department of Child Health
RSCM-FKUI, Jakarta
 WHO – Definition of Palliative
Care
 The active total care of patients whose disease is
not responsive to curative treatment.
 Control of pain, of other symptoms, and of
psychological, social and spiritual problems is
paramount.
 The goal of palliative care is achievement of best
quality of life for patients and their families.
 Concept of Palliative

Old concept/model of Palliative

care
New concept /model of Palliative
care
 Diagnostic Categories for
Palliative Care
 Group 1: Life-threatening conditions for which curative treatment
may be feasible but can fail, where access to palliative care may
beneficial alongside attempts at life-prolonging treatment and/or if
treatment fails.
– Advanced / progressive cancer
– Complex and severe congenital or acquired heart disease
– Trauma or sudden severe illness
– Extreme prematurity
 Group 2:

- HIV, chronic or severe respiratory failure, renal failure (on-transplant)

 Diagnostic Categories for
Palliative Care
 Group 3:

– Progressive / severe metabolic disease

– Chromosomal disorder
– Severe osteogenesis imperfecta
 Group 4:

– Severe CP, severe brain malformations, multiple disabilities

Why is Pediatric Palliative
Care a Challenge?
 Unusual diseases: 20-40% cancer,
– Congenital anomalies
– Metabolic conditions
– Neuromuscular degenerative disease
 Illness trajectory long/unpredictable
 Symptoms assessment – difficult
 Neonates & adolescences –special challenge
 Why is Pediatric Palliative Care
a Challenge?
Ethical questions
 At what age is the child competent to make
decisions ?
 Who decides what is the best interest of the
child ?
 Whose wishes should be followed ?

 What should the child be told ?

 How to communicate with the child ?

 Legal & Ethical Decisions
 About who decides
– Appropriateness of surrogate decision making by
parents
 About treatments
– When to start, limit, or stop medical interventions
 About the criteria for decisions
– Quality of life

1. Field MF, Behrman R, eds. When Children Die. Washington, D.C.: National Acad Press, 2003
2. Sabatino C. J Law Med Ethics 1999;27:297
3. Kunin H. Ethics Behav 1997;7(1):43
 Adult Patient vs Children Patient

 Most adult program admit patients close to

the time of death

 Children programs admit children close to

the time of diagnosis
 Length of stay may be longer than adults
 PEDIATRIC
PALLIATIVE CARE

Curative Care End-of-Life Care

Supportive
Care

Anticipatory After Death

Bereavement Care Bereavement Care
 Importance Factors
Spiritual
Support
Emosional
Support Comfortable

Symptoms
Management

Interpersonal
and Sosial
Communication Support
Patient pathway
Comprehensive Quality Cancer Care Trajectory for Children and Families. The trajectory effectively integrates
palliative, psychosocial, and other restorative and rehabilitative supportive care as part of disease-directed treatment
and follow-up across the full continuum to reliably address cure, comfort, and quality-of-life (QOL) objectives.
 What do the patients
wants?
 Pain and symptom control
 Achieve a sense of control
 Consistent communication
 Relieve burdens on family
 Avoid inappropriate prolongation of the
dying process
 What are the needs ?
1. Pain/Symptom Relief
 Fatigue
 Pain
 Dyspnea
 Swelling of extremities
 Mouth sores,
dysphagia
 Nausea/Vomiting
 Diarrhea, constipation,
urinary
2. Family Support
Parents
 Increased divorce rates
 Financial devastation
 Prolonged or dysfunctional
grieving
Siblings
 School failure, delinquency
 Depression
 Loss of self esteem,
Isolation
Symptoms in the Palliative
Phase
Patient (child)
 Physical symptoms :
 Pain (75%), poor appetite, fatique, lack of mobility,
vomiting
 Psychological symptoms :
 Sadness, difficulties in talking their feeling with
parents, fear of to be alone, loss on independency

Psychological symptoms of parent

• Fear of death, fear of physical problem, sadness
Symptoms At The End of Life in Children With
Cancer
80

70
%
60

50

40

30

20
Successfully
Treated
10 27 % (% Of Affected
16 %
Children) 10 %
Pain Dyspnea Nausea And Vomiting

Wolfe J. et al, NEJM 2000; 342(5) p 326-333

What are the solutions
 Effective communication
– Early, open, complete
– Prognosis, options, uncertainty
– Recommendations
– Probing questions
 Establish consistent relationships
– Primary physician
– Social services, nursing, dietician
Communication
 Communication is fundamental to the
physician-patient relationship
 Poor communication is a significant problem
affecting the medical profession
 Professional communication is a skill and
like any skill can and must be learned
 Communication with terminally ill children
and their parents are the most challenges
Effective Communication
 Communication is needed to establish
therapeutic relationship
 Without trust, good quality of care cannot be
provided
 Decision-making may fail to take into
consideration the dying person’s goal, beliefs
and values
 Patients may not receive treatment they wants or
may undergo unwanted interventions
 Patient-Centered Care
 Patient care that is respectful of and responsive to
individual patient preferences, needs, and values.
 The patient values guide all clinical decisions.
 The most important attribute is the active
engagement of patients when fateful health care
decisions must be made
 When an individual patient arrives at a crossroads
of medical options, where the diverging paths have
different and important consequences with lasting
implications
 Patient-Centered Care
 When is it important?
 Difficultmedical decisions
 When cure is not possible or unlikely

 When it is time to discuss withdrawing

life sustaining care
 Major surgeries—tracheostomy
 Key Questions
If the patient is the center of care, what do
they need to know:
 Do they know and understand their diagnosis?
 Do they know and understand their prognosis?
 Do they know this is life-threatening?
 Do they know that there are no curative options?
 How do they make decisions?
 If time is short, what is important to them?
 How to they prefer to receive medical information?
Conclusions
 Pediatric palliative care is characterized
by diversity of care
 Patient-centered care
 Effect of cancer on the family as a
central focus of care
 Goal: achieve pediatric palliative care to
reduce child and family suffering from
cancer