Professor Atul Gawande has the problem surgically excised and laid out for inspection in one of his unflinching but compassionate case studies:
‘What bothered Shelley was how little curiosity the staff members seemed to have about what Lou cared about in his life and what he had been forced to forfeit... They might have called the service they provided assisted living, but no-one seemed to think it was their job to actually assist him with living – to figure out how to sustain the connection and joys that most mattered to him.’
Gawande is an eminent surgeon. As a young resident he displayed little overt emotion when his patients died, but dreamt about finding their corpses in his bed. Since then he's toughened up but, with age and experience, begun to see how he and his colleagues fail to have the right conversations with patients, and how this leads directly to greater suffering.
Doctors hate to admit defeat, and the last thing patients want to hear is that nothing can be done. So there's another round of pointless chemotherapy, or a major and high-risk operation that might, at best, lead to a minor improvement. Among Gawande's most haunting stories are the patients who say they do not wish to end up living a half-life, “drugged to oblivion and tubed in most natural orifices as well as a few artificial ones”. But when the time comes to make the decision, either they or their loved ones cannot look death in the face; they demand that everything possible be done, and end up in exactly the state they most feared.
Gawande practises in the US, and I don't believe the worst excesses of the medical system would happen in the UK (God bless the NHS and its budgetary constraints). But many of us fear being trapped on the medical rollercoaster.
It's not just hospital-based, acute illness: Gawande diagnoses our whole approach to decline, disability, dementia and death as infected with the medical ethos, leaving people isolated and helpless. Health and safety are easy to measure, but how much worth people feel in being alive is not. Institutions focus on being efficient and, above all, safe: residents rise, wash, dress and eat to order. If they might fall they must use a wheelchair, even though that loss of mobility will certainly hasten their decline.
The child of Indian immigrants, Gawande has seen the old ways of old age, where elders were supplicated to, lived with their families and received support to live as they desired. When Gawande's grandfather was well past 100 he still wanted to ride around his fields each night; cue a family crisis meeting about the old man's safety? No, they just found him a smaller horse. But Gawande doesn't sentimentalise the intergenerational model, where carers were expected to sacrifice their own ambitions and family tensions simmered.
This engaging, humane book is best read calmly when we and our loved ones are in reasonable health. It made me reflect on the endings I've witnessed so far. Whether the journey from first symptoms to death took weeks or decades, it's easy to see in retrospect that we were staggering from crisis to crisis, doing our best but suffering from false hope and failing to plan for the inevitable downward spiral.
My mother tells me to put a pillow over her face, which indicates her general attitude but isn't really a plan. We need to start asking ourselves and each other the questions Gawande finally learnt to ask his patients: What are your biggest fears? What is most important to you? Which trade-offs are you willing to make - and which not?
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