Margaret McCartney: Living with Dying. Pinter and Martin
First published on BMJ Blogs
Surgeon, professor, and best-selling writer Atul Gawande confesses, half way through his new book, Being Mortal, ‘I felt foolish to still be learning how to talk to people at this stage in my career’. Like every conscientious, solution-focused surgeon he has found an answer by way of a simple, honest phrase to share with his patients, ‘“I’m worried.” ‘They were such simple words’ he says, ‘but it wasn’t hard to see how much they communicated.’
The patient might very well respond, ‘But I’m the sick one, what the hell are you worried about?’ This is an excellent question. Among the things doctors worry about is their own mortality and their inability to cope when they cannot cure. In 2012, Professor of General Practice, Keiran Sweeney found out he had incurable lung-cancer by reading his hospital discharge summary at home. He believed that the other doctors hadn’t told him because, ‘they were afraid to confront the metaphysics of my predicament, I am a man without hope.’ Many doctors are afraid to confront death, and others cannot bear to bear witness to suffering they cannot relieve.
One of the other things doctors worry about most is uncertainty, and as Iona Heath has recently argued, failure to manage uncertainty is an important cause of over-treatment, at the end of life especially. Faced with the question, ‘How long have I got, doc?’ doctors are particularly unsettled. Not wanting to disappoint their patients, or perhaps suffering over-inflated opinions about their treatments, many cancer-specialists tend to over-estimate life expectancy. But the disease of the modern age isn’t just cancer, where life expectancy is hard enough to predict, so much as multi-morbidity, the accumulation of several long-term conditions of which cancer may be one. Any single morbidity can deteriorate at any time, causing the others to buckle under the strain, but with intensive medical intervention you may be brought back to life; or not. You might survive for days or years. The awful truth is that we cannot tell how long you’ve got, and as Margaret McCartney explains at the beginning of her book, Living with Dying, life expectancy isn’t a problem that science looks likely to solve for the foreseeable future. Her previous book, The Patient Paradox was, among other things, a warning against the false predictive certainty of screening, and in Living with Dying she urges continued caution at the end of life. McCartney is a GP who works at the interface between suffering and disease where symptoms frequently defy explanation and the course of action is negotiated in the consultation between doctor and patient. For a conscientious GP, a consultation is as much of a skill and a matter of pride as an operation is for a surgeon. This is why GPs devote a considerable part of their training to consultation skills while surgeons are practicing their technical skills.
Remembering his communication skills training from medical school, Gawande notes that we have moved from Dr Knows-Best to Dr Informative, from paternalism to consumerism. But patients are neither children nor customers, despite the insistence of old surgeons and young policy makers. They are, unless they choose otherwise, our partners in care. Making the shift from Dr Informative to Dr Interpretive (I prefer ‘interested’), Gawande noticed that he was doing a lot less talking and a lot more listening in his consultations. Carefully eliciting our patients’ understanding of their condition, what matters to them, their goals, and how far they are willing to go down a medical route to achieving those goals is, or ought to be the aim of any consultation, not just those pertaining to the end of life. We wouldn’t expect a surgeon to be as skilled in the art of consulting as a GP, any more than a GP would be able to perform surgery, but a decision to operate, without exploring a patient’s values may be the wrong decision.
Much has been made of a tendency to medicalise the end of life, but both authors are clear that medicine still has a lot to offer. Many diseases can cause frightening and agonising deaths and good medical care, especially palliative care has a lot to offer. The last chapter in Gawande’s book, about his father’s death from spinal cancer is particularly harrowing, especially because his pain appeared to be so poorly controlled. I couldn’t help wishing he’d had better palliative care and a subcutaneous morphine pump. Symptom control can be very difficult and I think McCartney is right to be sceptical about the emphasis on helping people die at home. Some of us will require more help than others, and she is right to say, ‘how we die may be more important than where we die.’
Another consequence of medicalisation is to treat death as an illness. Because illness is embodied, a war on cancer or against death becomes a war on people with cancer or a war on the dying. It is an objectionable metaphor, but disturbingly apposite, and both Gawande and McCartney describe patients who suffer the full, brutal, futile force of fourth-line chemotherapy and cardiopulmonary resuscitation attempts. Freud balked at the ideas of doctors practicing psychoanalysis, as they would attempt to cure, rather than illuminate psychic suffering. Around the same time, in 1927, Francis Peabody wrote, ‘The most common criticism made at present by older practitioners is that young graduates have been taught a great deal about the mechanism of disease, but very little about the practice of medicine – or, to put it bluntly, they are too scientific and do not know how to take care of patients.’ In Being Mortal, Gawande writes, ‘We’ve put ourselves in the hands of the medical profession, valued more for their technical prowess than their understanding of human needs.’ We are still not very good at shifting our efforts from curing to caring or even providing both together.
Both books are, in fact, less about how we manage death, than how we care for the frail elderly, who with their multi-morbidities, may have years yet to live. As McCartney explains, frailty is a more reliable prognostic indicator than any medical diagnosis, but there is no drug or technical solution for frailty. My father saw both of his parents and his younger brother, suffer terrible psychotic, personality destroying dementia. Like many elderly people he fears losing his dignity, and his personality, being in pain or being a burden on his family more than death. And yet, as arthritis, heart and stroke-disease, diabetes and dementia take their toll, his greatest fears are unavoidable. And it is on my mother, above all, that the burden of care has fallen. At least he has his family and mostly, though his hearing is poor, his senses. Many elderly people are very lonely, without friends or family, or shut off from the world by the loss of their senses. As the proportion of elderly people rises and families become more fragmented, inter-generational age-gaps widen and austerity bites, the burden on care-givers will inevitably increase. Our inability as a society to provide sufficient resources for this is reason enough to fear aging more than death. The inspirational care-home menageries and independent living schemes Gawande describes are not the places most of us will spend the end of our lives. Carers are poorly paid (if at all), poorly trained (if at all) and for the most part under-supported, but no political party is willing to increase taxation to pay for better care.
With this grim thought in mind, we cannot avoid thinking about assisted dying (AD), though as McCartney, the more political writer says, ‘if we are fearing our death, let us at least not fear the things society can and should provide’. In my view, excellent personal and palliative care at the end of life will minimise, but not entirely eliminate requests for AD, but the spectre of inadequately funded care makes me worry that people will chose AD to avoid being a burden.
There are reasons to be hopeful. Gawande will be giving this year’s Reith Lectures and these issues will be given the high profile and public debates that they fully deserve. The Royal College of Physicians Future Hospital Commission has called for more expert generalists and geriatricians who specialise in managing multi-morbidity and care of the frail elderly. Palliative care, where it can be accessed is usually excellent. Many GPs are prioritising continuity of care, in our own practice, the percentage of appointments where a patient sees their own GP has risen from 50% to 80% in 2 years. Websites like Dying Matters and Death Café are facilitating conversations about death and My Ageing Parent is full of useful advice and support.
It is great that these two doctors have bought these issues to our attention. Gawande’s book is an easier read, in part because he is a brilliant writer, but also because he tells us what we want to hear, but it is Margaret McCartney who has long-known what Gawande has only just discovered, who is telling us what we need to hear. It is up to society and politicians to decide if we are prepared to provide the support so desperately needed for our ageing population.