Should doctors and patients learn to plan humane, happier endings rather than trying to prolong life?
Most of us would prefer to die in our own beds, with our families beside us. But, as a GP, Margaret McCartney sees too many end their days in a medicalised battle
Thursday 27 November 2014
NTBR – Tell Your GP, Have it printed in your WILL and Tattoo (or Permanent Pen ) it on your chest-Radical
Catherine is 72 and she has lung cancer. The cancer is advanced, despite recent chemotherapy. She has fallen overnight, and her husband tells me that she seems more unwell and asks me to visit. She has some pains in her bones, and she is breathless just walking a few paces. She has lost weight, looks frailer, and is clearly frightened. Getting out of the house is becoming more difficult, and more exhausting.
Catherine has been offered further palliative chemotherapy, which her family – especially her adored son – are desperate for her to keep going with. Her son Gary tells me, in a low voice, privately, at the front door: “we’re not ready to let go of her yet.” Her husband Tom asks me to try to persuade her into getting the treatment. He has told me, “I’m worried that she’s losing the fight.” Catherine has grazed her knee and her elbow, and she also has a chest infection. I think she is going to struggle being at home, and so we admit her to hospital. I find out a couple of weeks later that she had a further fall, breaking her hip, and died in hospital. When I speak to Tom, he tells me how upset he is: she had wanted to die at home, and he let her down. In truth: as her GP, I did.
Catherine and Tom are not real patients. They are fictional, but reflect the types of dilemmas and problems I come across frequently as a GP, and which patients, families and healthcare professionals face at the end of life. There is no doubt that standard treatment for cancers, such as chemo and radiotherapy, can effectively cure many cancers – for example, early-stage bowel cancer, or testicular cancer. But in other situations where cancer has spread, the benefits of medicine are less certain. A study published in The New England Journal of Medicine in 2012 found that 69 per cent of patients with lung cancer and 81 per cent of people with bowel cancer did not understand that the palliative chemotherapy they were having was not going to be able to cure their cancer.
Palliative chemotherapy can indeed extend lifespans. However, a systematic review of the evidence for chemotherapy in one type of lung cancer – non-small cell lung cancer – published in 2008 found that it increased the survival rate from 20 per cent at one year to 29 per cent. Clearly, that’s an improvement – but an improvement for only 9 per cent of the patients taking the chemotherapy. When we consider what’s called the “treatment burden” – not just the visits to the hospital, but the side effects of fatigue, nausea, hair loss or nerve pain – many people will weigh up the chance of success, and, entirely reasonably, opt not to have it. It can be entirely rational to prioritise quality of life over quantity.
Passing on: George Washington died alert, aware and in his own bed. This is the kind of of death most people would like to have (Alamy)
Yet the way we talk about cancer and illness can make people think that they have to have treatment – no matter the cost. Take a recent campaign in Glasgow run by the local Beatson cancer clinic. The massive billboard posters proclaimed: “Be full of hope. Be courageous. Be ready to fight.” Similarly, Cancer Research UK want to raise money to “beat cancer sooner” and wants to “inspire others to join the fight”. In 1977, Susan Sontag wrote, in Illness as Metaphor: “Illness is interpreted as, basically, a psychological event, and people are encouraged to believe that they get sick because they (unconsciously) want to, and that they can cure themselves by the mobilisation of will; that they can choose not to die of the disease.”
We see this all the time: obituaries that say that someone “lost his fight” against cancer. But there is a backlash. Recently, in the London Review of Books, Jenni Diski, who is being treated for cancer, wrote: “Under no circumstances is anyone to say that I lost a battle with cancer. Or that I bore it bravely. I am not fighting, losing, winning or bearing.” The language used around cancer can make it seem as though only “fighters” deserve to “win”, placing a moral judgement on people’s choices about what treatments to have. This only makes it harder for people to stop or decline therapies – even when they are unlikely to help, generating only side effects that make quality of life poorer.
In his recent book, Being Mortal, the US surgeon Atul Gawande writes movingly about what he identifies as the conflict between medical priorities of safety and survival and individuals’ priorities for simple well-being. In truth, there is often an awkward collusion between patients, families and doctors. Medics can feel as though they have to keep offering treatments – even though they are unlikely to help.
A study published in 2002 found that patients felt doctors were pushing a “positive” or “fighting” attitude, with – incredibly – patients sometimes feeling that they had to protect their families and doctors by hiding their distress. Most tellingly, a systematic review, published in the BMJ in 2002, examined the impact of psychological coping styles on survival and cancer recurrence. It found “little scientific basis for the popular lay and clinical belief that psychological coping styles have an important influence on overall or event-free survival in patients with cancer”. In other words, there is no need for patients to feel guilty about not “fighting” their cancer. It won’t result in longer life – and it may stop people from having the kinds of conversations that they want to. US and European studies suggest that the vast majority of people want accurate information about what is likely to happen to them – even if their lifespan is limited – and not to have the wool pulled over their eyes.
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