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If a doctor barely knows who a patient is, the consequences can be profound

Innate biases and a failure to consider what it is like to be the person in front of you can result in dangerously incorrect diagnosis, writes Dr AK Benjamin in The Guardian.

Benjamin is the pseudonym for a clinical neuropsychologist and author of the just-published book The Case for Love: My adventures in other minds. The author delves, disturbingly, into the minds of patients wounded or profoundly transformed by illness and misfortune.

The Guardian article by Benjamin, which is based on 10 years’ experience in diagnostics and acute rehabilitation in a large London hospital, was published on 26 July 2021. The article runs below, followed by a short publisher’s description of Benjamin’s unusual life, and an excerpt from a review of the book, also published in The Guardian.

As a clinical neuropsychologist I make mistakes, and I am not alone. Researchers interested in clinical decision-making estimate that across all medical fields diagnosis is wrong 10% to 15% of the time.

In many instances clinical errors are underpinned by one of a number of cognitive biases. For example, the “availability bias” favours more recent, readily available answers, irrespective of their accuracy; the “confirmation bias” fits information to a preconceived diagnosis rather than the converse.

In the time-restricted milieu of emergency medicine, where I work on occasion, particular biases compound: “the commission bias”, a proclivity for action over inaction, increases the likelihood of “search satisfying” – ceasing to look for further information when the first plausible solution is found, which itself might be propelled by “diagnostic momentum” where clinicians blindly continue existing courses of action instigated by (more “powerful”) others.

I can identify such failures in my own work, which may, counterintuitively, guarantee its relative quality: research on the “blind spot bias” indicates that doctors who describe themselves as excellent decision-makers perform relatively poorly on tests of diagnostic accuracy.

Intellectually, I understand that biases are part-bug, built into the brain’s learning preferences to short-circuit complexity in the face of rapid, evolutionarily advantageous decision-making.

Equally, they can be caused by different types of contextual imperfections; the lack of statistics and mathematical reasoning in medical epistemology; the absence of heuristics to identify how socio-cultural norms – ethnicity, gender, wealth, mental health – are integrated or excluded from decision-making.

But that intellectual knowledge does not translate to understanding what it’s like to be on the receiving end of error. And that lack of understanding might be the most profound bias of all.

When my daughter was a toddler she keeled over face first into her Rice Krispies one morning. A terrible dash to the nearest hospital followed, only for her to revive – wondering what had happened to her breakfast – in the triage queue at A&E. Having checked her over the paediatrician decided she had probably experienced a one-off seizure caused by a lingering cold. It wasn’t unusual in his experience.

I went to my work on a neurosurgical ward at a national children’s hospital. That afternoon when I described the morning’s events to a surgical colleague, he insisted I have my daughter reassessed, fearing the possibility that the seizure had been caused by an undiagnosed tumour. It wasn’t unusual in his experience. I rushed my daughter back to the original hospital where the paediatrician refused to scan for a tumour.

We were caught between two radically different diagnoses. Both doctors spoke with utter conviction about what was commonplace for them. Perhaps the difference had been caused by “a framing effect”: that the different emphasis I placed while retelling the story had helped to create the discrepant diagnoses.

More likely, it was caused by “base rate neglect” – where the underlying incident rates in the relevant population are ignored: the surgeon moved in the rarefied waters of a national hospital where tumours were run-of-the-mill; he never saw febrile seizures, which were relatively common in a local setting.

Thankfully, the paediatrician turned out to be right – it was a one-off event, an unforgettably frightening day for our family but nothing more.

Specific cognitive biases can be more or less corrected for by retraining and environmental support, or in more wholesale fashion by replacement with AI systems that use machine learning to improve diagnostic accuracy.

But the bias that neglects or foreshortens the experience of the patient is part of what Wittgenstein would call the background “picture” of medicine itself. The picture paints expert, highly specialist clinicians capable of making disengaged, illusion-free decisions about something, even when aspects of it may be fundamentally mysterious to them.

In other words, the picture creates perspectival distortions of its own, which can have catastrophic consequences.

Some years ago, a 75-year-old lady, who had lost her husband nine months before, came to my clinic reporting minor episodes of forgetfulness. After my formal memory assessment, the findings were inconclusive. But considering my report alongside her MRI – which showed hyperperfusion (subtle reductions in the blood supply) of the frontal poles of her brain – her neurologist decided she had the early stages of Alzheimer’s.

At our next consultation six months later, the episodes she reported were no longer minor: she’d flooded the kitchen three times in a fortnight; she got lost in a neighbourhood she’d lived in for 30 years; when her phone rang she tried to answer the television remote.

But the profile of her memory showed no signs of deterioration, and this time the MRI indicated that the hyperperfusion had disappeared altogether, leaving her with a typical-looking brain for someone halfway through their eighth decade. There was no indication of Alzheimer’s.

The neurologist’s original diagnosis was clearly wrong: transient changes in blood flow – probably relating to grief at the loss of her husband – had been mistaken for a neurodegenerative process. The neurologist admitted the error and corrected the diagnosis that same afternoon.

But the woman’s condition continued to deteriorate over the coming months despite a clean bill of neurological health. She was passed on to psychiatry with no sign of a solution. Something about not being “seen” properly in the first instance, compounded by a gross diagnostic error, had intractable consequences for her mental health.

Neurological trauma can change everything for a patient in a moment. And yet as acute clinicians we never see patients either side of a small window of care, neglecting who they might have been prior to it, and only giving short shrift to who they would become afterwards. Years after the fact, I found myself profoundly disturbed by how little I knew about some of my patients.

The framing effect of the medical picture, a failure to consider what it is like to be the person in front of us, means that clinical encounters are doomed to remain between strangers. Cognitive biases inevitably give way to emotional ones, restricting the possibility of empathy.

The whole thing is somewhat preordained: clinicians are selected for their knowledge, their problem-solving skills, not for their loving kindness. This is the starting point for my book The Case for Love, a series of case studies whose starting points are failures of imagination.

Imagination, a skill considered the province of storytelling, can broaden the perspective, enhance the picture, by deepening our humanity. Properly applied by clinicians, it may help correct certain biases, changing our patients’ lives for the better.

 

The Penguin Random House short description of AK Benjamin

Dr AK Benjamin trained in clinical neuropsychology in his thirties and worked for 10 years in diagnostics and acute rehabilitation in a large London hospital. Previously, he worked as a screenwriter for several years before setting up an NGO for homeless drug and heroin addicts who had been excluded by all other services, and was also a contemplative monk in California for two years.

Having taken a sabbatical to look at the possible role of meditation and other Eastern practices in neuro-rehabilitation, he now lives in India and works at an NGO in rural Uttar Pradesh, setting up cognitive rehabilitation services for children with acquired and congenital neurological conditions.

 

The Case for Love by AK Benjamin review – inside the minds of the severely unwell

The neuropsychologist and author articulates the thoughts of profoundly disabled patients in an imaginative, beautifully written study of consciousness and the fragility of life, writes Andrew Anthony in a review for The Guardian published on 12 July 2021.

A couple of years ago, the neuropsychologist AK Benjamin (a pseudonym) published an unclassifiable memoir-cum-case-study titled Let Me Not Be Mad. It was based on his experience of dealing with patients with severe brain impairments and psychiatric conditions, and on his own struggle to find meaning and purpose as a recovering alcoholic and drug addict.

The writing was at once powerfully precise and yet disturbingly elusive, as if the more carefully the author attempted to render a neurological reality, the more he was compelled to question its metaphysical basis. The same tension recurs in his new book, The Case for Love: My adventures in other minds.

That “adventures” can be taken as either drily ironic or a misleading attempt to add a more marketable note of action to an almost claustrophobically cerebral work. The other minds are once again those damaged or radically transformed by illness and misfortune.

The book opens with “Bella”, a zestfully retired woman who suffers a catastrophic stroke diving into the swimming pool of her new home in Albania. Brought back to a neuro-intensive-care unit in England, she is utterly paralysed, seemingly comatose. She has “lost everything below the eyes”, as she hears – or Benjamin imagines her hearing – one medic say, but her brain is still in some sense functioning.

In what sense? There is nothing she can do to convey any understanding or acknowledgment of the outside world. To an onlooker, she is a breathing corpse, with even her oxygen intake dependent on a machine.

But in a bravura act of imagination, empathy or, as the book suggests, love, Benjamin conjures an internal perception, a consciousness locked deep inside the moribund body.

It’s a nightmarish scenario treated with a Kafka-like appreciation of random displacement, “like being trapped in a surgical anaesthesia where she felt everything, worse, where she felt nothing but would imagine everything that wasn’t felt with phantom acuity”.

The medical efforts to keep her alive are like some sinister mechanised conspiracy, and yet alive she is, blessed and cursed with emotions and thoughts and distorted perceptions, a “contrail of selfhood rather than the thing itself”.

Is this literary reanimation really an act of love or an acting out of therapeutic impotence or even existential despair? It’s a question that Benjamin seems to challenge the reader to pose, when he’s not grappling with it himself.

Link to the full article in The Guardian below

 

If a doctor barely knows who a patient is, the consequences can be profound (Open access)

 

The Case for Love by AK Benjamin review – inside the minds of the severely unwell (Open access)

 

To order the book – The Case for Love: My Adventures In Other Minds

 

The Penguin Random House short description of AK Benjamin

 

 

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