Doctors often bristle at their portrayal in popular media as depersonalised body mechanics, devoid of compassion and empathy, and lacking in any but the most rudimentary of communication skills. Yet it will be apparent that many patients, even while expressing gratitude and respect for the efforts of their doctors, do admit to dissatisfaction with their medical encounters.
In his excellent book The Language of Illness, Prof Fergus Shanahan provides an important explanation for the frequent failure of generally well-intentioned medics to provide a better caring experience for their patients.
Simply put, it is because doctors and patients speak different languages.
Doctors use “disease words”, whereas patients speak “illness language”. As Shanahan points out, “illness is the lived experience of disease”. While aspirant doctors learn 10,000 new words in their first year of medical school, their textbooks make wholly inadequate mention of the illness words that concern patients, eg burden, stigma, waiting, loss and despair.
The author quotes from the “illness memoir” of John Updike, who related his own experience with severe psoriasis under the title “At War with My Skin”. He repeatedly uses the word “shame” to describe his feeling. Elsewhere, Updike likens the condition to leprosy: “The name of the disease, spiritually speaking, is Humiliation.”
Doctors underestimate the stigma of disease. According to the author, stigma is created by the response of others to one’s illness, whereas shame is what one feels in the face of stigma. Shame is the lived experience of stigma.
He takes task with the “empathy pushers”. Achieving true empathy with the experience of another’s illness is not a realistic goal, nor failure to achieve it a professional deficiency. He quotes from Bloom’s book Against Empathy: The Case for Rational Compassion, where “compassion, honesty professionalism, calm competence, and respect trump empathy in medicine”.
Although the doctor may have learned the details of a disease, she should make no assumptions about the patient’s own experience of the illness. Why? It is because no two patients experience an illness in the same way.
‘Eloquent performance’
Shanahan enumerates the multiple asymmetries between the doctor and the patient. For the patient, it is a crisis. For the doctor, a part of the routine. For the patient, the experience of illness is subjective, for the doctor the disease is seen objectively. The patient is in strange surroundings, the doctor is in her usual environment. The illness diminishes the patient’s status, but enhances the doctor’s.
Language can magnify this imbalance, sometimes deliberately. Latin was formalised as the language of medicine at a time when medicine was “ineffective and limited to the prescription of potions, purges and placebos”. A doctor’s skill was one of “eloquent performance”.
When illness does strike, the patient enters a new world, a world where even the powerful are disadvantaged. For Christopher Hitchens, a world-famous orator and polemicist, the loss of his voice to encroaching oesophageal cancer was particularly cruel, and the words “freedom of speech” took on a powerful new meaning. Hitchens coined the term “tumour town” for the new private world he entered on receiving the diagnosis of advanced cancer.
For Dr Oliver Sacks, the “systematic depersonalisation which goes with becoming-a-patient” was akin to being processed for entry to prison. “Transformation from person to patient follows a ritual in which personal clothing is replaced with an anonymous hospital gown, the person’s wrist is clasped by an identification bracelet, and their name is accompanied by a number.”
The sections dealing with the dying patient are particularly insightful. Shanahan analyses the illness words hope, suffering, loss, fear and anger, and points out the flaws and cruelties of military analogies like “beating cancer”. He develops the thesis of Barbara Ehrenreich, which emphasises the power of positive thinking and will to live to the dying patient is unhelpful.
At the end of life, the importance of companionship, and the pain of lost friendship is a recurring theme. Nor does companionship with the ill have to be endlessly vocal. A quiet presence provides consolation. “Honest presence, and caring or non-abandonment is the reassurance that patients often seek from their doctor, not a promise of the impossible.”
Neither is end-of-life care a time for dogmatism. “Acknowledging uncertainty in medicine shows the physician’s honesty and also creates room for hope and faith.” Similarly, a patient’s denial is not always a negative.
Screening and diagnostics
Shanahan highlights some uncomfortable aspects of “do not resuscitate” orders. DNR should not be a licence to a medical team to “nod, switch off and focus elsewhere”. Rather than “withdrawing” anything related to care of the dying, it would be far preferable to order that “everything to ensure comfort” was done.
The author disputes the relegation of certain societally troubling but medically accurate terms. Would we have taken violence against children more seriously if we had not replaced “battered baby syndrome” with “non-accidental injury”? Similarly, would we have been as blase about children’s school sports “traumatic brain injury” if we had not used the less threatening term “concussion”?
He disentangles the language of screening and diagnostics, and clarifies how risk should be explained. Doubling the minuscule risk of a very rare event can be great headline fodder, but still leaves a minuscule risk.
He decries “politico-speak” in health policy. As Republican party strategist Frank Luntz said, “it’s not what you say, it’s what people hear”. Focus groups were used to find the words which would mischaracterise anti-egalitarian resistance to Obamacare as objections based on compassion. The Trump administration has banned the Centres for Disease Control from using words like “vulnerable”, “entitlement”, “diversity”, “transgender”, “evidence-based” and “ science-based”.
He points out how vaccine sceptics use language to damage public health. He is wary of awareness campaigns, especially those ultimately inspired by self-interested drug companies.
Modern medical decisions are increasingly made by professional “managers” rather than by medical leaders. They too have weaponised language, preferring phrases like “resource allocation” to rationing. Doctors who highlight dangerous deficiencies are labelled “shroud-wavers”. “Clinical leads” are appointed to assume responsibility without power.
There are also lessons for illness language in Covid-19. While disease is often labelled as a great leveller, Covid was instead a great “revealer” of inequality. The poor suffered disproportionately. He disputes the politicians’ and economists’ argument that there is a binary choice between public health and the economy. An uncontrolled pandemic would wreck the economy.
One of the least surprising aspects of the book (given the extraordinary research record of its author) is the breadth and depth of the scholarship that went into it. Beyond the carefully and elegantly constructed arguments, it provides a wonderful anthology of writing about life, health, dying and caring, quoting from and analysing the thoughts of an encyclopaedic spectrum of patients, carers and artists, sources as diverse as Billy Connolly, Alan Alda, Leo Tolstoy, John Donne, Christopher Hitchens, Oliver Sachs John Betjeman and James Joyce.
This book should be on the reading list for students of all caring professions. It will also be of enormous interest to patients and their family members, and as a highly insightful, very readable piece of modern commentary, to the general public.
Prof John Crown is a consultant medical oncologist at St Vincent's hospital, Dublin
