I’ve just read Being Mortal: Medicine and What Matters in the End by the 2014 BBC Reith Lecturer, Atul Gawande. It’s a brilliant exploration of the unnecessary suffering that conventional western medicine so often inflicts on people at the end of their lives when we – doctors, patients, relatives – refuse to face our own mortality.
Gawande argues that rather than routinely seeking to extend life by all possible means, we should find out what people actually want and his conclusion is as simple as it is profound:
As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world – to make choices and sustain connections to others according to their own priorities.
In the last few months of her life, Chris instinctively knew that this was what mattered to her above all else. She wanted to be at home; to make art; to eat well; to be convivial; to be in nature; to love and be loved; and to be expansive until the moment she died.
We were lucky that the oncologist managing her treatment at Cheltenham Hospital was Sam Guglani, a doctor who exemplifies the very best of what Gawande champions in Being Mortal. At our first meeting he asked Chris “What do you want?” to which she replied “It’s all about quality of life.” And he steered us through the maze of chemo- and radio-therapy, with that in mind.
When it became clear after just a few days of treatment that the side-effects were too damaging, he had the courage to say to Chris: “This isn’t working for you.” Instead of battling on with ever more debilitating results, we (Chris, Sam and I) chose to stop treatment and focus instead on rehabilitative and palliative care at home. Asking “What do you want?” was the difference that made a difference.
One of the last outings we had, just 10 days before Chris died, was to the annual Medicine Unboxed conference that Sam curates and directs. For Chris, art was the prima materia of life, and living artfully the only sane response to a fractured world, so she was delighted to find that Sam is also an artful practitioner, a poet-doctor who understands the vital need to meet his patients authentically.
After she died, Sam invited me to meet him to talk about Chris. I took one of her sketch books with me to show him. Of all the images in the book, this was the one that seemed to give him most food for thought:
Perhaps it will influence the agenda for the next Medicine Unboxed conference?
I will certainly be there, with Chris beside me in spirit, to explore the frontiers of a medical practice that celebrates – as Gawande would have it – both our humanity and our mortality.
[Reference: Guglani, S (2014) Medicine’s Human Voices The Lancet, Vol 384, Sept, pp 847/8]
Coming Home to Story 