Thursday, 6 April 2017

The ethics of fascination

Much as I can get fed up with the glibness and superficiality of Twitter, it occasionally throws up some sustaining gems. Thankyou to Neassa Conneally (@neasaconneally) for posting this gut-punching extract from the Oxford Handbook of Clinical Medicine:

It somehow chimed with a remarkable piece I read recently by Kate Davies, who reflects on reading books about the brain while she prepares her own personal work about a stroke she suffered. Davies is somewhat critical of the genre, and takes to task in particular one widely respected author:
I know that [Oliver] Sacks is much beloved as a sort of avuncular figure in the field of popular science, and that many of you find his writing humane and amusing and insightful. Perhaps I too might once have felt that way, but from the perspective of a person who has experienced brain injury he really is “the doctor who mistook his patients for a literary career” in the memorable words of one reviewer. He may be a fantastically able writer with an undeniable facility of communicating the way that brain deficits might hold a key to the mysterious operations of our grey matter to a general audience, but his early work is so deeply exploitative of his patients, their complex conditions, their lives and their experiences, that I find myself unable to reconcile myself to anything of potential worth in his output. 
That section hit me in particular because I am probably one of those who have lionised Sacks. Davies' post made me think about a more general tendency alive in psychology and neuropsychology, and probably in all caring professions; the tendency toward fascination with people and their problems.

To be a psychologist of any stripe is to be fascinated by people, almost by definition. The field is crowded with a canon of human intrigue. A considerable amount of what we know about our minds has come from famous case studies of people whose lives were disrupted by events of violence and tragedy (a not insignificant number of which were aggressive surgeries by optimistic doctors). That tragedy fades into the background when we focus on a striking loss of ability, change in personality, or new double dissociation. When neuropsychological case studies are presented as education or literature, the dominant response is generally meant to be "Wow, how interesting!" rather than a reflection on the depths of a tragedy.

What are the ethics of this fading? Let's put aside ethical issues about what and whether to publish about patients. That question has its own well trodden terrain. What are the ethics of simply being fascinated in the clinical encounter? Of regarding people's minds not just in terms of their private sorrow, but as phenomena that engage interest? How often do clinicians remark to their colleagues that someone they are working with is fascinating? What do they do to that person when they say such things?

On the positive side of the ledger, I have always been impressed by Sacks' evident enthusiasm for the subjectivity of his patients. His pursuit of their experiences doesn't just deepen the reader's theoretical understanding, it presumably intensified the quality of the care Sacks gave as a doctor. His books are always full of ingenious rehabilitative strategies that could only come from an intimate understanding of the what it's like-ness of neuology. In this sense then, fascination is an engine for the good. Think of Jimmy, The Last Hippie in An Anthropologist on Mars. Sacks' curiosity about the nature and extent of Jimmy's dense amnesia prompts him to organize an outing to Madison Square Garden to see The Grateful Dead.

But does this process of deep scrutiny itself have a clinical downside? If some patients problems are fascinating enough to be worked up into bestsellers, what of the more mundane cases whose neurological losses are patchy and banal? Might they be implicitly shunted further down the pecking order of intrigue? Such a hierarchy is disquieting enough in itself. What if it led to those less interesting patients being afforded less attention?

Fascination might also be a distraction or manic defense. The extract I started with draws our attention to an aspect of illness that it can be easy to avoid thinking about; the loneliness and despair it so often entails. These are the things that patients might be expected to care about. But professionals have the luxury of keeping their focus on what is intriguing. What does it mean for patient care when the novelty or peculiarity of a symptom comes to dominate the picture? More attention perhaps, but more attention to a symptom, which would seem to entail distraction from the humdrum daily struggle of being unwell. Even without tangible effects on the well-being of the patient, such distraction seems somehow inherently perverse.

I'll finish with a quote from the psychiatrist Elvin Semrad, drawn from a book of his aphorisms:
I don't have any more interest in hallucinations and delusions that I would in a fever. I don't care about the fever, but what's going on to cause it. Don't get me wrong, fever is interesting for people interested in research on fever. But what are you going to do with this guy, help him or make him an academic study? -p.164.