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Palliative Care for Children in India

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.

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Palliative Care for Children in India

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  1. Palliative Care for Children in India Dr Gayatri Palat Program Director, India International Network for Cancer Treatment and Research (INCTR)

  2. 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.

  3. Childhood Cancer • 50,000 children with cancer every year • Cure rate <20%

  4. 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 )

  5. Haemoglobinoapathies in India High prevalence of pathological haemoglobinopathies (Christianson et al. 2006) 9,000 cases of thalassemia major are born every year.

  6. Sickel Cell Anemia Painful crisis: 86.6% Malaria commonest infection Precipitates painful crisis Death -26%

  7. 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.

  8. Palliative Care • In India • Access< 0.4% • Population: 1.21 Billion • ( 17% of world) • 50% below 25 years Jammu & Kashmir Himachal Pradesh Ludhiana Chandigarh Punjab Uttaranchal Haryana Delhi Arunacha Pradesh Digboi Uttar Pradesh Assam Rajasthan Gauhati Jaipur Bihar Jharkhand Madhya Pradesh Calcutta Gujarat Indore Chhattisgarh Orissa West Bengal Cuttack Maharashtra Mumbai Pune Hyderabad ANDHRA PRADESH Karnataka Goa Chennai Bangalore Kerala Calicut Coimbatore Lakshadweep Trichur Tamil Nadu Malappuram Andaman & Nicobar Islands Alleppey Map not to scale Trivandrum

  9. 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

  10. Pediatric Palliative Care, MNJ Institute of Oncology, Andhra Pradesh • 84 million • A 350 bedded tertiary care cancer hospital

  11. Pediatric Oncology in MNJ IO 1000 children with cancer / year • Low Cure Rates • High Treatment Abandonment

  12. “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.

  13. 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.

  14. 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

  15. Integrated Palliative Care Palliative Coordinator and Medical Oncology team

  16. Integrated Palliative Care Palliative Care only End of Life care Palliative Treatment Symptomatic Treatment Cure Curative Therapy

  17. Pediatric Pain and Palliative Care Support Groups for Families Pain & Symptom Relief Psychosocial Support , Recreation and Rehabilitation End of Life Care Bereavement Support Procedure Related Pain

  18. Delivery of Care • Out-patient and day care • In-patient consultation and care • Home-based and rural care • Phone call hotline

  19. Outcome

  20. New Patients (Pediatric Palliative Care)- 2006 to 2012

  21. 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

  22. 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

  23. 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

  24. …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

  25. … 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

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