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

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