Research Introduction - Liz McDermott
The International Observatory on End of Life Care is currently undertaking a comprehensive review of hospice and palliative care developments in India.
It is estimated that one million new cases of cancer occur each year in India, with over 80% presenting at stage III and IV. Experience from cancer centres confirms that two-thirds of patients with cancer are incurable at presentation and need palliative care and approximately one million people are experiencing cancer pain every year. It is difficult to assess the exact requirement for palliative care because of inadequate disease registration, communication problems and the cultural stigma attached to cancer and HIV/AIDS.
To undertake such a comprehensive review of hospice and palliative care developments in one of the most populous and culturally complex countries in the world is no small task. We have been working closely with our colleagues in India and using the established methodology of our country report. The result will be the first comprehensive analysis of the hospice-palliative care situation in India, something that is desperately needed as services begin to develop in different ways and as opportunities to learn from the key success stories become more apparent.
Aim
To assess the current state of palliative care in India, mapping the existence of services state by state and exploring the perspectives and experiences of those involved, with a view to stimulating new development.
Methods and analysis
A multi-method review involving a synthesis of evidence from published and grey documentary literature; ethnographic field visits across India; qualitative interviews with 87 individuals from 12 states; collation of existing public health data. Participants were hospice and palliative care activists in India, including physicians, nurses, patients, patient family members, managers, volunteers and policy makers.
A draft report of the research findings will shortly undergo a validation process which involves collaboration with key palliative care practitioners in India. The full validation report will be available on the IOELC website in February 2006. Back to top
We have identified over 135 hospice and palliative care services in 16 states in India. These are usually concentrated in large cities, with the exception of Kerala, where they are much more widespread. Non-government organisations and public and private hospitals and hospices are the predominant sources of provision. There are 19 states or union territories in which we were unable to identify palliative care provision. Development of services is uneven, with greater provision evident in the south than the north. For the majority of states coverage is poor. Barriers to the development of palliative care include: poverty; population density; geographic distances; opioid availability; workforce development and limited national palliative care policy.
Successful models exist in India for the development of affordable, sustainable community-based hospice and palliative care services. These have arisen from adapting western models of hospice and palliative care for implementation in the India cultural context. Further work is required to ensure that the growing interest in hospice and palliative care in India is utilised to increase the momentum of progress. Back to top
- Full country report on IOELC website
- Presentation of results to the 13th International Indian Association of Palliative Care Conference, Chennai, India 10th-13th February, 2006
- International peer-reviewed journal article
- International palliative care journal article
Research partners
This work has been funded through grants from the Irish Hospice Foundation, National Hospice and Palliative Care Organisation and Help the Hospices.
