If someone had asked me at the beginning of this year as to what “Palliative Care” meant, I would have perhaps balked! Other than the dictionary meaning of the word palliative- which means to soothe or sedate (associated with a drug, usually), my knowledge of this field of medicine was grossly poor. Despite having lost my mum to cancer many years ago, and having seen her endure extreme pain towards the end of her life, I didn’t realize there was this entire science behind how terminally ill patients could also be cared for. That is until I heard of Dr. Suresh Kumar and his brand of community driven end-of-life care. When we started chatting over cups of hot tea on a rainy evening in my house, and he started telling me about the work his organization, the Institute of Palliative Medicine in Kerala , and the society he set up, Pain and Palliative Care Society, he filled me with hope and energy about how scientific expertise when combined with local culture and a strong community participation can drive social change. What he has built with his team of 30, 000 (yes, 30, 000!!) volunteers, trained in administering end-of-life care to patients, in the districts around Calicut alone can be a wonderful case in point.
The recent Economist report on palliative care is a wonderful study that compares the end-of-life care indices in different countries and while India is at an abysymally low 40, in a list of as many countries, what stands out that one of the best recognized cases of community-driven palliative care as opposed to a hospice based care is also ironically from India. The system of training volunteers to provide dignity to the dying and the incurable, is based deeply on the culture where the neighbours and family typically take care of those that need attention as opposed to an unfriendly strange hospice. Isnt it a pity that depite WHO recognizing the Pain and Palliative Care Society’s brand of community driven programmes as one of its only kind in the world and conferred on this society, the title ‘Demonstration Project’, when Indian media, chose to report on the Economist report, they chose to ignore even a brief mention of this, only focussin on the negatives. http://timesofindia.indiatimes.com/india/India-worst-in-end-of-life-care/articleshow/6174380.cmsThe power of community based programmes like these is that they have the potential to become a movement and a catalyst of change, impacting positively many other associated issues in the community, even though providing palliative care could be the main driving force. As Dr. Suresh tells me, in North Kerala, whatever the volunteers work on, be it supporting hygiene education or cleaning up the environment, in the minds of the local people-everything is “palliative care”! I firmly believe now that what this organization has started in Kerala can be emulated in other parts of India and the world on one hand, and using this as a platform, there is a strong potential to rope in a wider net of concerned citizens around the world who wish to be a part of this movement. Any naysayers?