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 The active total care of the child’s body,

mind and spirit and giving support to the
family (WHO; 1998a)

 World Health Organization (WHO) 2005

Palliative Care is an integrated system of
care that: improves the quality of life, by
providing pain and symptoms relief, spiritual
and psychosocial support from diagnosis to
the end of life and bereavement.

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 American Academy of Pediatrics
◦ “integrated model in which the components of
palliative care are offered at diagnosis and
continued throughout the course of illness”
whether the outcome ends in cure or death

◦ “The goal is to add life to the child’s years, not

simply years to the child’s life”

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  NOT
 IS ◦ “giving up”
◦ Evidence based medical ◦ “accelerating death”
treatment
◦ Vigorous care of pain
◦ “in place of” curative
and symptoms through or life-prolonging
illness care
◦ Care that patients may ◦ the same as hospice
want at the same time
as treatment to cure or
prolong life

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 Curative care
•Focuses on quantity of life and prolonging
of life
 Palliative care
•Focuses on quality of life and death, and
views death as a natural part of life

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 Palliative
“Active Care
Treatment”

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 Begins when illness is diagnosed, and continues
regardless of whether or not a child receives treatment
directed at the disease
 Incorporates a broad interdisciplinary approach that
includes the family and makes use of available
community resources; it can be successfully
implemented even if resources are limited
 Provided in tertiary care facilities, in community health
and hospice centers, and in children’s homes
 Affirms life and regards dying as a normal process
 Neither hastens nor postpones death
 Provides relief from pain and other distressing
symptoms

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 Integrates the psychological and spiritual aspects
of patient care
 Offers a support system to help patients live as
actively as possible until death
 Offers a support system to help the family cope
during the patient’s illness and in their own
bereavement
 Palliative care strives to relieve pain and other
symptoms of suffering, but also focuses on the
spiritual, emotional, psychological, social and
physical needs of the patient and his family.

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 Child-focused, family-oriented, and relationship-
centered
 Relief of suffering and enhancing quality of life for
the child and family
 Chronic, life-threatening, and terminal illnesses are
eligible
 Child: unique individual; family: functional unit
 Not directed at shortening life
 Goal directed and consistent with the beliefs and
values of the child and his or her caregivers

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 Interdisciplinary team: always available, provide
continuity
 Most importance: child and caregivers in decision-
making
 Facilitation and documentation of communication are
critical tasks of the team
 Respite care and support: families and caregivers
 Bereavement care: provided for as long as needed
 Do-not-resuscitate orders should not be required
 Prognosis for short-term survival is not required

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 Community resources

Dietician

Volunteers Occupational
Therapist

Physician

Social PATIENT
Worker Chaplain
family

Nurses
Administration Physiotherapist

Other therapies Pharmacist

Other health care professionals

Ajemian, Oxford Textbook
of Palliative Medicine, 1993
 Addresses needs that may become most
prominent as death approaches
◦ Death preparation
◦ Assurance of comfort
◦ Support for autonomy, decision making
consistent with values, and preparation for
surrogate decisions
◦ Intensifying family support
 Physical: Symptoms, progressive impairments
 Pain, other symptoms, and side-effects are managed
based upon the best available evidence
Breathlessness Anorexia
Insomnia Fatigue/weakness
Anxiety Nausea
Depression Confusion
Constipation
 The outcome of symptom management is the safe
and timely reduction of the symptom to a level that is
acceptable to the patient
 Psychological: Symptoms, psychiatric disorders,
mood and worries, adaptation and coping, body
image, sexuality
 The interdisciplinary team includes professionals
with training and skills in the psychological
consequences and psychiatric co-morbidities of
serious illness
 Appropriate pharmacologic and non-
pharmacologic therapies are initiated for
depression, anxiety, insomnia or other symptoms
 Bereavement support is available for up to 13
months
 Social: Role functioning, family integration, intimacy
 Comprehensive interdisciplinary assessment identifies
the social needs for patients and their families
 Referrals to appropriate services are made that meet
identified social needs:

Access to care Transportation

Rehabilitation Medications
Counseling Community resources
Equipment Advocacy
Help in the home, school or work
 Spiritual: Religion and faith, meaning, values, need to
contribute, transcendence
 Professionals with expertise in assessing and responding to
spiritual and existential issues are included on the
interdisciplinary team
 Regular ongoing exploration of spiritual and existential
concerns occurs as appropriate
 Contacts with spiritual/religious communities, groups, or
individuals as desired by the patient and/or family are
facilitated
 Religious or spiritual rituals as desired by the patient and/or
family are supported
 The Palliative Care team assesses and attempts to
meet the culture-specific concerns of patients and
their families

 Communications are respectful of cultural

preferences regarding disclosure, truth-telling and
decision-making

 The program attempts to respect and

accommodate the range of language, dietary, and
ritual practices of patients and their families
 Care is consistent with the professional code of
ethics for all involved disciplines
 The team aims to prevent, identify and resolve
ethical dilemmas related to specific
interventions
◦ withholding or withdrawing treatments
◦ instituting DNR orders
◦ use of sedation
 Team members are knowledgeable about legal
and regulatory aspects of palliative care
 Futile Treatment: offers no benefit to the patient

 Extraordinary Treatment: care offers significant

burden and only minor benefits

 Justice: determines on what basis scarce resources

will be distributed

 Beneficence/‘Do No Harm’ … what is in a person’s

good or best interest?

 Autonomy: component of respect for person…is

the right of self determination, the right to make
decisions about themselves
 Group 1
Life-threatening conditions for which curative treatment may be feasible, but can
fail. Where access to palliative care services may be necessary when treatment
fails children in long-term remission or following successful curative treatment are
not included. (Examples: cancer, irreversible organ failures of heart, liver, kidney.)

 Group 2
Conditions where premature death is inevitable, where there may be long
periods of intensive treatment aimed at prolonging life and allowing participation
in normal activities. (Example: cystic fibrosis.)

 Group 3
Progressive conditions without curative treatment options, where treatment is
exclusively palliative and may commonly extend over many years. (Examples:
Batten disease, mucopolysaccharidoses, and muscular dystrophy.)

 Group 4
Irreversible, but non-progressive conditions causing severe disability leading
to susceptibility to health complications and likelihood of premature death.
(Examples: severe cerebral palsy, multiple disabilities such as following brain or

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 Patient Groups For Pediatric Palliative Care Services

Group 1 Group 2

Advanced life-limiting condition from Children with progressive life-

which death within 12 months would limiting/life-threatening conditions
not be unexpected who are not expected to survive into
adulthood, but whose prognosis is
Group 1A
Comfort-focused approach has anticipated to exceed one year
been chosen, or disease-focused
interventions not possible
Group 1B
Advanced life-limiting illness with
substantial disease and symptom
burden for whom cure is nonetheless
hoped for, or for whom all aggressive
disease-focused and potentially life-
sustaining options are being pursued
Patient/ Child
 Not legally competent
 Lacks verbal skills to describe needs, feelings, etc.
 Not achieved a "full and complete life”

Family
 Difficulty understanding treatment plans,
prognosis, etc.
 Needs relief from burden of care
 Stress on finances
 Difficulty with siblings

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Caregivers
 sense of “failure”
 lack familiarity with dosages and medications for
symptom management
 lack experience in caring for dying patients
 difficulty of prognostication for children with
complex problems

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 Surat Keputusan Menteri Kesehatan Republik
Indonesia, Nomor 604/MENKES/SK/IX/1989.
 Surat Keputusan Menteri Kesehatan Republik
Indonesia No. 812/MenKes/SK/VII/2007
 19 Pebruari 1992,Poliklinik Perawatan Paliatif dan
Bebas Nyeri di RSUD Dr.Soetomo,
 Then, Jakarta, Bandung, Yogyakarta, Denpasar
dan Makassar (Only in 6 provinces for 18 years).

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In 2008, The Singapore International Foundation
- each year there are approximately 600 children
develop cancer in Jakarta.
(>50% penderita kanker datang dalam stadium
lanjut).
- In all of Indonesia, this number has reached 1100
new cases of cancer patients under the age of 18
years old each year (SIF, 2008).
- High prevalence of children with HIV/AIDS,
although there is not an exact estimate of the
number of children suffering from HIV/AIDS. This
data emphasizes the importance of palliative care
services for children.

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 Focus on infectious diseases.
 Mindset of medical personnel
 Less interesting job

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 Indonesia’s first palliative care project for children was
launched by Rachel House
 Established in 2006
 non-profit organization, care for children from poor families
between the ages of 0-18 years old with terminal illnesses
such as cancer and HIV/AIDS.
 With their vision of “never seeing a child die alone without
love and care,”
 Initially, inpatient and homecare services. Over time, RH
realized that the model of in-patient care was not well
received by the patient’s family. Inpatient care is not
consistent with Indonesian culture as it is every Indonesian’s
dream to leave this world at home

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 National Community Health Insurance (Jamkesmas),
the Poor Families Insurance (Gakin) or the
Certificate of Being Unable to Provide for Oneself
(SKTM).
 RH is also a palliative care training provider in
Indonesia. With assistance from palliative care
professionals from Singapore, visits from highly
experienced palliative care nurses and nurse
educators from Australia,
 http://www.youtube.com/watch?v=5K8uHudyKU0

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 PEDIATRIC PALLIATIVE CARE: not about dying, it’s
about helping children and families to live to their
fullest while facing complex medical conditions.
 Pediatric palliative care: an interdisciplinary practice
 Coordination of care: critical and a central function of
a pediatric palliative care team
 Palliative care is different from hospice: early from
diagnosis.

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 Physical concerns- address pain and non-pain
symptoms with pharmacological and non-
pharmacological treatment plan
 Psychosocial concerns- discuss fears, coping,
communication, previous experiences with death,
resources for bereavement
 Spiritual concerns- review families beliefs
 Advance Care Planning- identify decision makers,
provide information on illness, establish goals of
care, make end of life plans
 Practical concerns- identify healthcare team
coordinator, location of care, plan for home/school
environment, order medical equipment, address
financial concerns
 Q- Question the child
 U- Use pain rating scales
 E- Evaluate behavior and physiological
changes
 S- Secure parents’ involvement
 T- Take the cause of pain into account
 T- Take action and evaluate results
 Irritability/restlessness
 Change in sleep patterns
 Loss of appetite/ change in feeding patterns
 Inconsolability
 Variation in crying pattern
 Repetitive movements (head banging,
rocking)
 Postural changes
 Favoring of affected limb
 Immobility
 Unusual acquiescence
 Pain:
 Assessment
 Treatment
 Non-opioids and opioids
 Side-effects
 Barriers
 Adjuvant
 Other types of pain
 Other symptoms
 Acetominophen 10-15 mg/kg PO/PR every
4-6 hours
 Ibuprofen 10 mg/kg PO every 6-8 hours
 Naprosyn 5 mg/kg PO every 12 hour
 Cox II Inhibitors
 Codeine 1-1.5 mg/kg PO every 4 hours
Long-acting:
 Methadone (liquid/tabs)
 MSContin (tabs)
 Oxycontin (tabs)
 Fentanyl (tabs/patch/lollypops)
 Short-acting:
 Morphine (elixir,tabs,IV,SC)
 Hydromorphone (tabs)
 Oxycodone (liquid/tabs)
 Local Control (pain team)
 Give medications RTC not PRN
 Try to use PO administration
 Try to use one drug only – maximize dose
 Reassess pain with every patient contact
 Escalate dose, not frequency
 Add breakthrough dose if necessary
 Sedation
 Improves with time
 Psychostimulant: methylphenidate
 Nausea
 Ondansetron
 Urinary retention
 Change of opioid, crede, catheter
 Constipation
 Docusate/Senna immediately, fluids, bulk
 Pruritis
 Antihistamine
 Sweating
 Intractable side effects?
 Consider a change to alternate opioid or rotating opioids
 Naloxone
 Fear of addiction
 Symbolic meaning of “morphine drip”
 Dislike of altered consciousness/drowsiness
 Fear of other side effects- respiratory
depression
 Fear of shortening life
 Knowledge deficit
 Principle of Double Effect – Effects that would
be morally wrong if caused intentionally are
permissible if foreseen but unintended. Does it
apply?
 Risk of respiratory depression is greatest when
opioids are first begun- tolerance to the
sedative and respiratory depressant effects
develop over the first few days
 Pain acts as antagonist to respiratory
depression
 Proper treatment of pain may actually prolong
life (Manfredi NEJM 1998), and contribute to an
enhanced quality of life (JAMA, 1995)
 Guided imagery
 Hypnosis
 Acupuncture
 Accupressure
 Reike
 Therapeutic touch
 Distraction
 Play therapy
 Exercise
 Relaxation techniques/ Breathing exercises
 Psychological intervention
 Neuropathic pain
 May require massive opioid infusions
 Rx: Methadone, Gabapentin, tricyclic
antidepressants
 Bone pain
 Cox II inhibitor
 corticosteroids
 bisphosphonates
 Immobility
 Feeding difficulty
 Failing speech
 GE Reflux
 Incontinence/Constipation
 Mental decline
 Seizures
 Muscle spasm
 Contractures
 Pressure sores
 Managing respiratory secretions
 Recurrent infections
 The fundamental responsibility of parents is
to nourish children- it may be impossible for
some to withdraw
 The goal of nutrition and fluid management
should be to alleviate hunger and thirst, to
reduce anxiety, to preserve social aspects of
meal times
 Supplemental fluids and nutrition can cause
discomfort
 Etiology:
Disease progression
Anemia
Malnutrition
Sleep disturbance
Medication side effects
 Treat to improve quality of life
 103 parents of children who died of cancer
between 1990 and 1997 at CHB/DFCI were asked if
their children suffered in their last month of life
 53% of the children had little or no fun
 29% had significant anxiety
 61% had significant sadness
 63% were often not calm or peaceful
 21% were often afraid

 We must address these issues

Wolfe et al NEJM 2000
 Children’s concepts of death at different ages
necessitate different approaches

 Explaining death to children