Palliative Care for Children in India
Dr Gayatri Palat
Program Director, India International Network for Cancer
Treatment and Research (INCTR)
Chronic Disease Load in India
A growing burden of non-communicable diseases and chronic
diseases becoming the leading causes of death in rural India
Joshi R, et al. Mortality data from the Andhra Pradesh Rural Health Initiative. Int J Epidemiol 2006;35:1522–29.
Childhood Cancer
• 50,000 children with cancer every year
• Cure rate <20%
HIV and AIDS in Children• Estimated 70,000 children below the
age of 15 are infected with HIV
• Nearly half of reported AIDS cases are in the 15–29 age group
• Mortality 60% by 36 months( National AIDS Control Program )
Haemoglobinoapathies in India
High prevalence of pathological haemoglobinopathies (Christianson et al. 2006)
9,000 cases of thalassemia major are born every year.
Sickel Cell AnemiaPainful crisis:
86.6%Malaria
commonest infection–Precipitates
painful crisis–Death -26%
High burden of genetic, chromosomal and metabolic
disorders
Verma IC , Burden of genetic disorders in India, Indian J Pediatr. 2000 Dec;67(12):893-8.
Calcutta
Pune
Gauhati
Hyderabad
Indore
Mumbai
Ludhiana
Cuttack
Chandigarh
Delhi
Digboi
Chennai
CoimbatoreTrichur
Calicut
Malappuram
Bangalore
Alleppey
Trivandrum
ANDHRA PRADESH
KarnatakaGoa
Kerala
TamilNadu
Chhattisgarh
Maharashtra
Madhya Pradesh
Rajasthan
Gujarat
Uttar Pradesh
Bihar
Jharkhand
WestBengal
Orissa
Assam
ArunachaPradesh
Uttaranchal
Haryana
Punjab
HimachalPradesh
Jammu & Kashmir
Andaman & Nicobar Islands
Lakshadweep
Map not to scale
Palliative CareIn India
Access< 0.4%
Population: 1.21 Billion( 17% of world)
50% below 25 years
Jaipur
Children's Palliative Care Project, India-Mumbai
Partners•Tata Memorial Hospital •Indian Association of Palliative Care•ICPCN•WPCA
A ‘two country project’ of Department of International Development, UK
Pediatric Palliative Care, MNJ Institute of Oncology, Andhra
Pradesh
•84 million
•A 350 bedded tertiary care cancer hospital
Pediatric Oncology in MNJ IO
1000 children with cancer / year
• Low Cure Rates
• High Treatment Abandonment
“If you send me home, they will never bring me back”
Firdous, a 12 year old girl with Osteosarcoma
Existing socio-economic conditions render some children vulnerable and more at risk to abuse, exploitation and neglect.
Integrated Pain and Palliative Care Program for Children-
2007
Zero-tolerance to pain – every effort to keep a child pain free
To incorporate palliative care into the care of the child right from the time of diagnosis.
Policy Development by the Government
• Opioid availability
• Creation of faculty and staff position in the department
• Inclusion of cancer palliative care in the state sponsored insurance scheme
Integrated Palliative Care
Palliative Coordinator and Medical
Oncology team
Integrated Palliative Care
Palliative Care only
Palliative Treatment
Curative Therapy
End of Life care
CureSymptomatic Treatment
Pediatric Pain and Palliative Care
Procedure Related Pain
Psychosocial Support , Recreation and Rehabilitation
Pain & Symptom Relief
End of Life Care
Support Groups for Families
Bereavement Support
Delivery of Care
• Out-patient and day care
• In-patient consultation and care
• Home-based and rural care
• Phone call hotline
Outcome
New Patients (Pediatric Palliative Care)- 2006 to 2012
Training and Capacity Building in Pediatric Palliative Care
A MNJIO- International Network for Cancer Treatment and Research (INCTR) program, funded by OSI
•‘Personal training’
•2011
Fellowship in Pediatric Palliative Medicine
Training and Capacity Building
A Pain sensitive oncology teamA module on pediatric palliative
care in the all
training coursesStudents from
India, Nepal and
Africa
Drug Availability
• A center with high morphine consumption
• Opioids Oral and injection morphine, Fentanyl injection and transdermal patches
• Most other palliative care essential drugs available
…Outcome
• Early Integration of palliative careBetter QOLLess treatment abandonment
• Smoother transition to end of life care
Lesser treatment abandonment rate resulting in better chances of
survival
… Firdous writes‘My tumor is growing. I know I am not getting better but I don’t want to pain. Missing home. Please say ‘namaste’ to your friends there’
28.11.2012