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Can Medicine Be Cured

Page 19

by Seamus O'Mahony


  The soft skill most touted is ‘communication’. Many educators – particularly those who never have to deal with real patients – sincerely believe that they can teach it. Those who actually practise medicine are not quite so convinced. Addressing the British Psychological Society in 1955, Richard Asher trashed this notion, one of the articles of faith most cherished by that particular audience:

  the way we deal with our patients, and especially how we talk to them, is about the most important part of our trade; but can it be taught? I doubt it. It can be learned by experience and to some extent by watching great doctors handling their patients, but it cannot be taught like pharmacology. All the power of tongue and pen, and all the wisdom of textbook and lecture can never teach a doctor the knowledge of when to probe, when to speak and when to keep silent. They are private mysteries with a different solution for every one of the million permutations of personality involved between a doctor and his patient.

  Jane Macnaughton argued, in a much-cited 2009 Lancet essay, that empathy is neither desirable nor teachable:

  it is potentially dangerous and certainly unrealistic to suggest that we can really feel what someone else is feeling. It is dangerous because, outside the literary context, where we are allowed direct experience of what a fictional patient is feeling, we cannot gain direct access to what is going on in our patient’s head… a doctor who responds to a patient’s distress with ‘I understand how you feel’ is likely, therefore, to be both resented by the patient and self-deceiving.

  Empathy can clash with other moral considerations and sways us towards the needs of the few over the many. We see this phenomenon in health-care spending. Empathy and awareness raising are closely related, and equally mendacious. Writing in the Irish Times, the health economist Anthony McDonnell took the example of the Irish government’s decision to fund the cystic fibrosis drug Orkambi, which costs €100,000 to treat a single patient for a year. Cystic Fibrosis Ireland is a powerful advocacy group, and many patients with the disease are articulate and media-savvy: ‘At a time when our health system is struggling to stay afloat we should refocus the resources we have, where they can achieve the most good for the greatest number of people possible, rather than cherry-picking people on how sad their story appears.’

  Compassion and empathy are often used interchangeably, but they are entirely different qualities. One can be empathetic without being compassionate: psychopaths and bullies, for example, tend to be very skilled in divining people’s emotions. Similarly, one can be compassionate without being particularly empathetic, as good doctors often are. Empathy can be a hindrance to doctors in their work, as over-identification with the patient’s distress might distract the doctor from doing something to relieve that distress. Older, more stoically inclined patients value other qualities such as competence, honesty and respect. Paul Bloom interviewed a surgeon for his polemical book Against Empathy (2016):

  Christine Montross, a surgeon weighs in on the risks of empathy: ‘If, while listening to the grieving mother’s raw and unbearable description of her son’s body in the morgue, I were to imagine my own son in his place, I would be incapacitated. My ability to attend to my patient’s psychiatric needs would be derailed by my own devastating sorrow. Similarly, if I were brought in by ambulance to the trauma bay of my local emergency department and required immediate surgery to save my life, I would not want the trauma surgeon on call to pause to empathize with my pain and suffering.’

  Dr Joel Salinas’s memoir, Mirror Touch: Notes from a Doctor Who Can Feel Your Pain (2017), is presented as the confession of a super-empathizer, but is an unintentionally comic warning of the dangers of empathy for a doctor. Salinas is a young (mid-thirties) Boston-based neurologist, who claims to suffer from a condition called ‘polysynesthesia’. Chromosynaesthesia – where some people experience sounds as colours – is well recognized. Salinas, however, has multiple forms of synaesthesia, including ‘mirror-touch’ synaesthesia, which causes him to feel the pain others experience. In Wes Anderson’s film, The Royal Tenenbaums, the neurologist and author Raleigh St Clair (played by Bill Murray and based on Oliver Sacks) studies a pre-adolescent boy called Dudley Heinsbergen, who has a rare neurological syndrome characterized by ‘amnesia, dyslexia and colour blindness, with an acute sense of hearing’. St Clair exhibits Dudley at medical schools and hospitals, and writes a bestselling book called Dudley’s World. Joel Salinas is the Dudley Heinsbergen of empathy. His memoir has all the key components of the contemporary medical quest memoir: ‘I knew at an early age I was different, even though I didn’t know how or why I was different… I remember asking my mother why no one seemed to like me.’ He visits the laboratory of V. S. Ramachandran in San Diego (he of mirror neurons fame), and after a battery of psychometric tests is told he has ‘mirror-touch synesthesia’. He travels to London to attend a meeting of the UK Synaesthesia Association, and takes the opportunity to visit the laboratory of the neuroscientist Michael Banissey at University College London, where he has a further round of tests, which confirm the diagnosis.

  You would think that medicine would be an eccentric career choice for a polysynaesthete, yet he enrols at the University of Miami Medical School. He spends some time in Gujarat in India, where he gets his first exposure to obstetrics, which doesn’t go well: ‘As I watched the obstetricians perform an episiotomy, slicing their surgical scissors across a woman’s flesh, I felt my pelvic diaphragm stretching and nearly shred… I felt desecrated. I felt powerless. Yet no one seemed to notice or care, not even the woman who had just given birth.’ (I mused here that a woman who had just given birth after an episiotomy might have more on her mind than a queasy medical student.) During his first week as an internal medicine resident, he is called to a cardiac arrest: ‘The sensations in my body mirrored the sensations in his. Compression after compression on his chest and on mine.’ The book is crammed with these experiences: when a patient is undergoing a lumbar puncture (spinal tap), Salinas feels the needle going into his own back; when a trauma patient undergoes an abdominal surgical exploration, he feels the knife going in; dealing with a manic patient, he become manic too: ‘I had the physical sensation, as if I had just drunk several shots of espresso’. Salinas can even empathize with death:

  Whenever a patient died, I felt as if I had died, too. The feeling never waned. In this regard, I have died many times. Watching patients pass away, I realized in my body the final moments before fading into death… Like Lazarus, I stand regularly at the threshold and behold an altar with enough space for a new sense of the divine…

  He found himself ‘gravitating towards the study of empathy’, and assures us that ‘the mirror neuron system is a generally accepted theory about how the brain works’. Were Raleigh St Clair to write Joel’s World, he might describe Salinas’s syndrome as a rare neurological condition characterized by solipsism, humbug and relentless self-promotion. Salinas, in his modish, up-to-the-minute feel for the zeitgeist, is in his own way as odious as the legendary bullies who dominated British medicine in the 1950s and 1960s. When I started in the profession, medicine accommodated such bullies; now it provides a home for swooning empaths.

  In the decade since the Stafford Hospital scandal began, the NHS has been regularly accused of an institutional lack of compassion. Stafford, however, was nothing new, and was not an isolated case. The story of inhumane and cruel treatment of patients at Ely Hospital in Wales broke in 1967; an inquiry by Geoffrey Howe was published in 1969. Between Ely and Stafford there were several official inquiries into poor care at various NHS hospitals. The ranks of doctors and nurses have always contained a minority of the lazy and the unkind. We delude ourselves if we believe that this minority can be identified and weeded out at recruitment. What did change between Ely and Stafford, however, was the unintended, unforeseen and perverse disincentivization of compassion. The target culture has created many new unintended consequences and perverse incentives, skewing clinical priorities and distracting staff from providing
compassionate care. Metrics have become more important than patients. Many senior experienced ward nurses now view this work as intolerable and are leaving their posts for less stressful positions as specialist nurses and managers: there is no incentive – professional or financial – for them to stay on the wards. This has created a vacuum where leadership is most needed.

  Sir David Weatherall, regius professor of medicine in Oxford, wrote an essay for the British Medical Journal in 1994, called ‘The inhumanity of medicine’, in which he drew attention to this professional and institutional disincentivization of compassion: ‘From the time that they [doctors] decide on a career in medicine until they retire, many of them live in such an overcharged atmosphere, and one in which the demands on them are now so great, that sometimes the central reason for what they are doing – that is, the wellbeing of their patients – is forgotten.’ What can be done about this? ‘Legge’s Axioms’ might guide us. Sir Thomas Legge (1863–1932) was the first medical inspector of factories in Britain. He is famous for his four axioms on the prevention of occupational lead poisoning, which appeared in his posthumously published book, Industrial Maladies. The first two axioms are: (1) ‘Unless and until the employer has done everything – and everything means a good deal – the workman can do next to nothing to protect himself although he is naturally willing enough to do his bit’, and (2) ‘If you can bring an influence external to the workman, you will be successful; if you can’t, or don’t, you won’t.’ In other words, institutional and organizational change is far more likely to succeed than attempts to change the behaviour of individuals. Compassion will not be regenerated by educational workshops, or by increasing even more the already stifling regulation of doctors and nurses; if anything, this only exacerbates the problem. The average doctor and nurse is, to use Legge’s phrase, ‘naturally willing enough to do his bit’. We should instead remove the institutional and organizational perverse incentives which act as barriers to compassionate care.

  Empathy is easy, and useless, serving only the desire of the empath to feel good about themselves, and to announce their virtue. Medicine needs compassion, not empathy. Compassion is not easy, because it is composed of more than simple human kindness. Compassion also requires courage, competence and bottom. Compassion means that not only do you recognize suffering and distress, you do something to relieve it. Empathetics™ and the Narrative Medicine Program at Columbia may be able to teach medical students and doctors glib customer skills and a superficial carapace of ‘caringness’, but the regeneration of compassion in our hospitals will require a more fundamental shift in the culture of contemporary health care.

  14

  The Mirage of Progress

  Progress – rather than compassion – is the core belief of the medical–industrial complex. The philosopher John Gray wrote that ‘questioning the idea of progress at the start of the twenty-first century is a bit like casting doubt on the existence of the Deity in Victorian times’. The belief in progress reflects the power of science to change our lives. Over the last one hundred years, longevity has increased dramatically, and immunization has reduced or eradicated diseases that used to kill millions of people. The benefits of science seem so self-evident that only a fool or a madman would question it, or the idea of progress. But science, which gave us all these unalloyed benefits, also gave us nuclear bombs and napalm; it is entirely possible that technology may render the world uninhabitable for humans. Then, progress will end. John Gray has never denied the reality of scientific progress, or its benefits, but has consistently argued that although scientific knowledge increases from generation to generation, gains in ethics and politics are more easily lost: ‘They have to be learned afresh with each new generation.’

  Every new ‘advance’ in medicine is a genie that cannot be put back in the bottle. Big Science isn’t going to suddenly become thoughtful, scholarly Little Science. Pharma isn’t going to develop a social conscience in late middle age. The medical misinformation mess is now a foetid swamp that may never be drained. As once-poor countries develop and become richer, they develop Western appetites for all sorts of commodities, particularly medicine. End of life care among wealthy Indians, for example, now brings them the worst excesses of American medicine. At present, medical ‘progress’ gives us the dubious and ruinously expensive gift of helping us to survive long enough to experience loss of independence and chronic disease. We must surely have better, nobler ambitions than to survive into a frail old age. We are not a mere homo economicus, or the bundle of diagnoses that is homo infirmus. Medicine is the bully that is stealing from education, from decent affordable housing, from the arts, from good public transport. Our ever-increasing spending on it is not giving us any greater comfort or joy.

  We need a reformed medicine, but how is that going to happen? Too many have a vested interest in unreformed medicine continuing, so it is very unlikely to happen by a societal consensus; we will have to be forced into doing it. What would force us? The most likely events are economic collapse and a global pandemic of a new, untreatable infectious disease on a background of climate change and exhaustion of the earth’s resources by globalization. In such a scenario, medicine would have to shrink down to treating the victims of this pandemic and providing basic measures such as immunization, trauma care and obstetrics. This scenario is not as unlikely as you might imagine. Martin Rees, the astronomer royal, predicted in his 2003 book Our Final Century that ‘the odds are no better than fifty- fifty that our present civilization… will survive to the end of the present century… unless all nations adopt low-risk and sustainable policies based on present technology’. The Stockholm Resilience Centre, a research institute for sustainability and environmental issues, has defined nine boundaries that must be maintained to ensure a flourishing civilization. Five of these boundaries have been crossed: extinction rates, climate change, phosphorous and nitrogen cycles, land-use change and ocean acidification. Tom Koch, an expert in emerging diseases, reckons that in less than a decade we will have a major pandemic of a new infectious disease; one that will be untreatable, which will affect 60 per cent of the world’s population, and will kill 30–35 per cent of those infected.

  Microbiologists have been warning for some years that resistance to antibiotics is steadily rising: what was once a concern is now a crisis. The problem was predicted as far back as 1945 by the discoverer of penicillin, Sir Alexander Fleming: ‘The public will demand [the drug], and then will begin an era of abuses.’ New antibiotic development has stalled, mainly because these drugs are not profitable enough for the pharmaceutical industry. Pharma is interested mainly in blockbuster drugs (such as statins) that are used for decades, not in antibiotics that are given for a week. The Office of Health Economics in London estimated that the net present value of a new antibiotic is only about $50 million, while a drug used to treat a chronic neuromuscular disease is worth $1 billion. Compared with new cancer drugs, antibiotics are simply too cheap for Big Pharma to bother with. Meanwhile, overuse of the antibiotics we currently have may lead to most of them becoming useless, with the consequences of routine surgery becoming impossible and sepsis untreatable. Paradoxically, sepsis awareness campaigns, which contribute substantially to overuse of antibiotics, may create a future when sepsis is untreatable.

  The achievements of medicine’s golden age are astonishing, a one-off in human history – a unique confluence of events, science and chance. Since then, the production of data has risen exponentially; the yard is covered with bricks, but the edifice is no nearer completion and, if anything, is crumbling. The quarter-trillion dollars spent annually on medical research is mainly wasted, and simply fills the yard with bricks that will never be used to build anything. Meanwhile, people get old, get sick and die, as they always did. Even if progress continued at the rate of the mid-twentieth century, it would probably not be in our best interest, with an ever-diminishing young generation supporting millions of centenarians. What would happen if we won the War on Cancer and
could reverse dementia? What would we die of then? Would ‘old age’ become, again, an acceptable ‘cause of death’ on a death certificate? Would that modern fairy tale, the ‘compression of morbidity’, finally come true? This concept, first elaborated by the Stanford medical professor James Fries in 1980, claims that as longevity steadily rises, old age will be a time of increasingly prolonged good health, with an ever-shorter period of illness prior to death. American baby-boomers, bombarded with images of marathon-running centenarians, have invested heavily in this fairy tale, and are desperate for it to be true. Unfortunately, it isn’t. In a 2010 review of trends in mortality and disability in the US, Eileen Crimmins and Hiram Beltrán-Sánchez, from the Davis School of Gerontology at the University of Southern California, concluded: ‘The compression of morbidity is a compelling idea. People aspire to live out their lives in good health and to die a good death without suffering, disease, and loss of function. However, compression of morbidity may be as illusory as immortality. We do not appear to be moving to a world where we die without experiencing disease, functioning loss, and disability.’

 

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