Sarah Thomas Monopoli was just 34 years old and pregnant with her first child when she was diagnosed with lung cancer. Within one year, after enduring a litany of painful and increasingly desperate treatments, she was dead.
Boston surgeon and regular contributor to The New Yorker Atul Gawande wove Sarah’s story as “a patient whose care I regret” into the Sydney Writers’ Festival discussion of his latest book, Being Mortal, about illness, medicine and what matters in the end.
This moving account of a young mother who had significant medical intervention even as it became obvious that she would not survive, weighed heavily on Dr Gawande, who noted that for the last months of her life “she was so weakened, she couldn’t hold her baby”.
Though having afforded Sarah every offering of modern medicine, Dr Gawande couldn’t help but feel he had failed her.
Embarking on his surgical career, Dr Gawande loved nothing more than a problem to fix. But over time, he found himself stymied by patients whose problems were really just the conditions of ageing, infirmity or terminal illness, and not solvable with more or better surgery. In fact, such interventions often dramatically decreased patients’ quality of life, leaving them unable to enjoy the time they had left.
“Gradually I realised that people have priorities besides living longer,” Dr Gawande told his What Matters in the End audience at the Sydney Opera House on Wednesday. This insight led him to identify a series of questions that would help doctors understand a person’s goals for their own care.
“One of the fundamental roles of medicine is to help people be clear on what their priorities are and then help them achieve those priorities,” he said, rather than simply pushing ahead with aggressive treatments which assume mere survival to be the highest goal. The questions ask what a person’s goals and priorities are if time is short, what outcomes are unacceptable, and what they are willing to sacrifice and what they are not.
One of Dr Gawande’s motivations for writing this book was his own father’s illness and death due to a brain tumour. Asking his father these questions helped to direct treatment as the illness evolved.
Knowing that father’s goal was to have the ability to sit at the dinner table, enjoy some food and interact with his family, Dr Gawande could recognise when the benefit of treatment was outweighed by the side effects. When his father could no longer enjoy a meal with his family, “it was clear the treatment was taking away his quality of life”. His father spent the last four months of his life in palliative care, and Dr Gawande describes him being able to live those last months “as a person, not a patient”.
Palliative care involves terminally ill patients discontinuing aggressive treatments and living at home where their symptoms are managed in order to help them have the “best possible day each day”. Dr Gawande cited research showing that people who chose palliative care over aggressive treatment had fewer days in hospital, less chemotherapy, and lived 25 per cent longer than they would otherwise have done: “If you could package asking those key questions as a drug, it would be a multibillion-dollar blockbuster.”
Returning to Sarah’s story, Dr Gawande described her as appearing at appointments as the “picture of life, with her baby in her arms”. Even though he felt the best thing would have been not to operate, as her condition was certainly terminal, he found it difficult to say this to her.
And so the treatments went on, taking away precious time she could have spent with her husband and baby. Through his interactions with Sarah, his father and many other patients, Dr Gawande said that he gradually discovered he needed to do two things: “Hope for the best, but prepare for the worst.”
His motivation is not merely to help people die well, but to live life well. “I don’t think that the goal is a good death. I think the goal is to live life, right up until the very end.”