When the “Father of palliative care in India” and recent winner of the prestigious Alison Des Forges Award for Extraordinary Activism, asks you for a favour, you don’t say no.
Meeting Dr M.R. Rajagopal earlier in his office this week was far less intimidating than one might expect. Raj, as he asked me to call him, is a globally-renowned figure. He has built the ‘world’s most successful’ community-based palliative care programme, and together with the organisation he founded — Pallium India — has made significant progress in broadening access to morphine in India. He’s clearly an important person. And I woke him up.
After apologising for disturbing him from his nap (much needed, his schedule is pretty gruelling), he asked if I would go out on a home visit to a hilly, forested area about 40 kilometres from Trivandrum.
A couple of days later, I’m up early travelling in a van with two nurses and a doctor. Everyone nods off about half an hour into the journey, except me. Filled with a mix of envy and respect at their ability to sleep in a thinly-padded chair on such a bumpy, swervey journey, I relax into it, taking in the lush tropical scenery flying past.
About an hour later, the van has accumulated a few of Pallium’s local volunteers and comes to a stop at the foot of a steep, muddy slope. Everyone piles out and picks their way carefully up the slippery path through the trees, towards a small bare-breeze-block house. Inside, on the dirt floor, a thin sheet hung over the open window throws a red hue over the only light entering the small room where Nalinakshy lies. A recent stroke has left her totally immobile. Her seizures currently controlled by medication, she spends all day and night lying on an airbed designed to reduce the chance of bedsores.
The team assess and talk to her and her family. They change her catheter, listen to the family’s questions and concerns. They offer advice and some liquid paraffin to keep her skin from drying out, and head on to the next patient.
A couple of stops later, we arrive at Vimala’s house. Highly disoriented, Vimala is unable to concentrate on most of what Dr Amirtha says to her. Her expression seems fixed into a gaze of almost cinematic shock, as if the scene has been paused on a moment of pending disaster.
After her first few basic questions are left unanswered, hanging in the dark silence of the room, Dr Amirtha changes tack and asks Vimala,
‘Do you remember my name?’
Vimala locks eyes with the doctor, her expression softening a little,
‘Yes, I do’.
That day I witnessed a lot of cases that just made my heart sink. But seeing the tabooed border-zone of death crossed by this skilled, caring, pragmatic bunch of humans was a reminder that in the half-light that many people live, the phrase ‘quality of life’ takes on a whole new meaning.
On other home visits like these, Sarah has seen how far Pallium India goes to ensure that people have a ‘good death’ — for example, paying for someone’s child to get through school after they die. And how they find innovative ways to combat the life-limiting conditions that people face, to bring a little empowerment and autonomy back. One young woman with paraplegia that Sarah heard about this week was given livelihood training. She has now become her family’s main breadwinner by making jewellery and selling it on Facebook. This is amazing, on so many levels.
October 10th is World Hospice & Palliative Care Day 2015, so we’re celebrating the awesome work of Pallium India on a beach in Trivandrum. Amongst showcasing some of the things that patients have made as part of their rehabilitation, Sarah will be joining her classmates and singing in Malayalam, Tamil, and Hindi. There are even rumours that an a cappella rendition of Lennon’s Imagine is on the cards…
… Imagine all the people
Sharing all the world…
Tom
An abbreviated version of this story first appeared in the weekly newsletter series Fifty Frames.
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