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PEDIATRIC PALLIATIVE CARE

(Pediatric Oncology Department, “Dharmais” Cancer Hospital Model)

Edi Setiawan Tehuteru, MD (Pediatrician), MHA, IBCLC


Pediatric Oncology Department, “Dharmais” Cancer Hospital
etehuteru@yahoo.com
Pediatric Palliative Care:

is the active total care of the child’s body,


mind, and spirit and also involves giving
support to the family.
It begins when illness is diagnosed &
continues regardless of whether a child
receives treatment directed at the disease.
Health providers must evaluate and
alleviate a child’s physical, psychologic,
and social distress.
A. Historical Model of Palliative Care
B. Alternative Model of Palliative Care
Pediatric Palliative Care:
Effective palliative care requires a broad
multidisciplinary approach that includes
the family and make use of available
community resources; it can be
successfully implemented even if
resources are limited.
It can be provided in tertiary care facilities,
in community health centers, and even in
children’s home.
Pediatric & Adolescent Palliative Care Model,
WA Cancer & Palliative Care Network, Sept. 2009.

SPECIALIST
PPC

COMMUNITY- COMMUNITY
BASED HEALTH Local Care Coordination TERTIARY &
CARE SECONDARY
ACUTE CARE
CHILD
FAMILY

PRIMARY OTHER
HEALTH AGENCIES/
CARE ORGANISATIONS
History
• 2008:
Rachel House
• 2009-2010:
Pediatric Palliative
Care Training
• 2009:
Pediatric Palliative
Care in “Dharmais”
Cancer Hospital
21 April 2009
April 2009 June 2009

November 2009

June 2009
“Dharmais” Palliative Care Unit

Adult Pediatric
Palliative Care Palliative Care
Unit Unit
How it’s run…

Patients

Primary
Physician

Pain Management Pediatric


Palliative
End of Life Care
Care Team
SUGGESTION
Pain Management
CLINICAL

FRIENDLY WARD
NO PAIN NO SCARED

APROACH
PSYCHOLOGICAL SOCIAL
Pain Management
Pain Killer

Morphine
Amitriptyline
Codein
Paracetamol
How it’s run…

Patients

Primary
Physician

Refer to Rachel House


Pain Management Pediatric
Palliative
End of Life Care
Care Team
SUGGESTION
Pediatric Palliative Care Offers
• 24-hour phone support
• Care coordination
• Assistance with decision-making
• Case meetings
• Practical support – equipment, respite, etc
• Care plans
• End of Life planning
• Bereavement support
End of Life Care

The better place for a child to die is at home

Don’t let a child die alone


Healthy person’s world
job salary travel
tax
WORK house

status
family
promotion
car health spirituality
Sick person’s world
Work

family
health
spirituality
Dying person’s world
work, house, car, finances

family spirituality

medical issues
End of Life Care

“It should be just as natural


to die as it is to be born”
Sir Francis Bacon
How parents reacts?

• Never give up
• Accept the reality
How the practice in Indonesia?
“Amit, amit…..”
“I want it maximal…”

The question is:


Who wants it ?

FAMILY
What is your dream ?
What is your dream ?
A, boy, 8 year old
Neuroblastoma in the suprarenal
stage IV
(metastases to the liver)
Chemo resistant
Educate the Caregiver
Try to fulfill his dream
What else?
Distribution of Pediatric Palliative Patients in
“Dharmais Cancer Hospital that
Referred to Rachel House 2009
Hospice Home Care
Sex
Boy 2 1
Girl 2 4

Referral
RSKD 4 5

Age (year)
0-4 0 1
5-9 1 0
10-14 2 3
15-18 1 1
Hospice Home Care
Diagnosis
Embrional Carcinoma 1
Ovarium Cancer 1
Ewing Sarcoma 1
Osteosarcoma 1
Nasopharingeal Cancer 1
LMNH 1
Rhabdomyosarcoma 1
Meduloblastoma 1
Mixopapillary Ependimoma 1
Place of Death
Hospice 2
RSKD 1
Home 5
Pediatric Palliative Care 2010
Month End of Live Pain
Care Management
January 1
February 2
March 1 1
April 2
May 2
Juni
Juli
Agustus
September 1
Distribution of Pediatric Palliative Patients in
“Dharmais Cancer Hospital 2010

End of Life Pain


Management
Sex
Boy 1 7
Girl 2
Age (year)
0-4 2
5-9 1 4
10-14 2
15-18 1
End of Live Pain
Management
Diagnosis
Meduloblastoma 1
Rhabdomyosarcoma 2
Leukemia 1
LMNH 2
Germ Cell of the Lung 1
Osteosarcoma 2
Ewing Sarcoma 1
Place of Death
Hospital 1
Home
Thank You

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