Jose was 22 when he landed at the Palliative Care centre in Calicut.
A few days before he died, he was at his regular clinic undergoing a routine check for his carcinoma, when his doctor inserted the now familiar instrument up his nose for a procedure. Jose sneezed, in a reflex action to the irritation caused by the instrument and splattered blood across his doctor’s shirt. The doctor, visibly upset, admonished Jose for spoiling his shirt and asked him to leave. Humiliated and depressed, Jose walked out of his clinic feeling quite worthless. A patient who had overheard this exchange in the clinic reached out to Jose and told him about the Pain and Palliative Care clinic and told him that perhaps he might be shown more compassion for his condition there.
Jose knew he didn’t have much time left to live when he arrived at the centre but in the few weeks and months of dedicated attention and immense love showered on him by the volunteers gave him a new hope in life. He started volunteering himself, setting a trend somewhat in being a “patient-volunteer”, and as his stamina improved, he started to contribute to the centre’s activities. He also started chronicling his amazing transformation from someone who desperately wanted to die to someone who was giving others the hope to live.
Jose didn’t live long. Despite his brave battle against the disease, it did get the better of him. But his notes, that were subsequently published by the Mathrubhumi (Malayalam daily) in a serialized form captured the attention of readers and became popular enough for the publishers to release the series of articles into a book. The royalty proceeds from the book support Jose’s mother to this day.
I heard this, and many other mind numbing stories at the Institute of Palliative Medicine where I spent the weekend trying to help them create a process to document their incredible 17 year old history and develop a road map for the next 5 years, along with Gopinath Parayil. The objective was to help the team of volunteers, old and new to share a common vision and continue the momentum they have built in the last few years and inspire others to replicate what they have managed to achieve.
As a young nurse who is a relatively new member in the programme commented, “I almost feel guilty that I was looking at what I do merely as a job. I feel proud to be a small part of what I think is a historical journey, and I promise I will do every bit to keep this legacy alive”!
India has been rated as among having the worst ratings for End of Life care, but the Palliative Care movement in Kerala makes it impossible for any report in the world to ignore its impact. As the BBC recently, and the Economist in a report a few months back noted, the Kerala model of Palliative Care is the best in the world, mainly because its community-led and largely self sustaining. The recently won recognition of being a WHO Collaborative Centre is just incidental.
It’s one of those projects that we at niiti consulting feel proud to be associated with, and makes me say a small thank you under my breath that I get the opportunity to do what I do!
If you are inspired by this initiative and want to be associated with it, as a volunteer or a contributor, visit www.concernwithoutborders.org and learn how you can make a difference.