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 Anemia  Painful 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 Dec;67(12):893-8.

Calcutta Pune Gauhati Hyderabad Indore Mumbai Ludhiana Cuttack Chandigarh Delhi Digboi Chennai Coimbatore Trichur Calicut Malappuram Bangalore Alleppey Trivandrum ANDHRA PRADESH Karnataka Goa Kerala Tamil Nadu Chhattisgarh Maharashtra Madhya Pradesh Rajasthan Gujarat Uttar Pradesh Bihar Jharkhand West Bengal Orissa Assam Arunacha Pradesh Uttaranchal Haryana Punjab Himachal Pradesh Jammu & Kashmir Andaman & Nicobar Islands Lakshadweep Map not to scale Palliative Care In 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  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 Child with Cancer Palliative Care Only Palliative Therapy Curative Care Palliative Coordinator and Medical Oncology team

Integrated Palliative Care Palliative Care only Palliative Treatment Curative Therapy End of Life care Cure Symptomatic 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) 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 team  A module on pediatric palliative care in the all training courses  Students 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 care  Better QOL  Less 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’