The Indian Palliative Care movement was launched by a few activities around the country in the mid-eighties. The Gujarat Cancer and Research Institute was the first centre where palliative care activity was initiated in 1980. The Shanti Avedana Hospice was started in 1986 in Mumbai and pain clinics were started at the regional cancer centers, Trivandrum and Kidwai Memorial Institute of Oncology. The Indian Association of Palliative Care was registered in Ahmadabad in 1994 in collaboration with the government of India and the World Health Organisation (WHO).
The palliative care and hospice movement spread to various parts of the country between 1990 and 2000. 1997 was a progressive year, with the start of a palliative home care service in Delhi and the CIPLA Palliative Care and Training Center. Kerala was the first state to announce palliative care as a health care policy in 2008, followed by Maharashtra in 2013. Since 1987 the National Cancer Institute of India was initiated and palliative care has formed an integral part.
Various interventions from pain and policy groups and the committee from the Indian Association of Palliative Care (IAPC) were involved in amending the stringent Narcotic Drugs and Psychotropic Substances Act of 1985. The final amendment to this act was increasing the availability of morphine for relieving pain in life-shortening and life-threatening conditions in 2014.
Paediatric palliative care in India amounts to providing palliative care in localised areas. Kerala is the only state which provides palliative care in all districts through government and NGOs participation. In India, paediatric palliative care is provided as part of general palliative care, no separate paediatric palliative care centers have been established.
A paediatric palliative care programme was launched by the IAPC in 2010, which focused on pain relief in HIV positive children, children suffering from cancer, thalassemia and neurological disorders. This project was launched in the Maharashtra state and was funded by the Department of International Development. The International Children’s Palliative Care Network (ICPCN) and Help the Hospices became partners of this programme, and the Tata Memorial Hospital provided mentorship.
The programme has three sites in Maharashtra, namely the Jawahar Rural Cottage Hospital, the Urban Paediatric HIV Centre and the Mahatma Gandhi Mission Hospital.
In 2007 the Mehdi Nawaj Jung (MNJ) Institute of Oncology, in Andhra Pradesh, started a paediatric palliative care unit in collaboration with the International Network for Cancer Treatment and Research (INTCR) and Pallium India. Through the training of medical personnel and volunteers there has been an improvement in the provision of palliative care to paediatric oncology patients.
The exact number of paediatric patients requiring palliative care is not available in India. 1 200 000 new cancer patients are being diagnosed every year in India, of which 1.6 – 4.8% are paediatric cancer patients. The paediatric HIV population is around 220 000, with roughly 25 000 children being diagnosed every year. Around 12 000 thalassemia patients are born every year.
The paediatric mortality rate is around 10.5 deaths/1000 and the mortality rate for children below 5 years is around 61/1000 births. There is still a lot of work to be done to achieve the development goals of 41/1000 births according to WHO standards. Congenital anomalies, malnutrition, neurological disorders due to birth asphyxia all add to these statistics.
Some barriers to provision
- The family is often unaware of the concept of palliative care, they would like to ensure curative care until the end.
- Palliative care is now included in the curricula of a few undergraduate and postgraduate medical and nursing students. However the incidence is very low, with only a few states actively participating. Most paediatricians are unaware of the world of palliative care.
- Most policy makers are unaware of the need of paediatric palliative care in society. After the ICPCN conference at the Tata Memorial Hospital in Mumbai, the state health minister agreed to the inclusion of paediatric palliative care in the state’s health policy.
- Teachers and volunteers are unaware of the need for palliative care for children, which makes the availability of palliative care services limited.
- ‘Children cannot die’ is a belief system that adds to the extension of curative treatment. There are no specialty bereavement services, hence the care of siblings, children and family members is often not possible. This responsibility often falls on the shoulders of society and relatives rather than the palliative care team.
Improving awareness and service provision
Improving awareness amongst stakeholders, ensuring the availability of opioids and a trained palliative care team will play a key role in the efficient provision of paediatric palliative care.
With medical personnel and the society at large still lacking a basic knowledge of paediatric palliative care, there is still a long way to go. Spiritual care, understanding of death and developmental issues are better discussed once the basics of palliative care enter the mainstream medical system.
Perinatal palliative care can be included after obstetricians and neonatologists have been enlightened. There are a few centres that are doing exemplary work, however we still have miles to go before reaching every needy child in India.