If only we’d known

By Edwin Jesudason.

Lee Fierro was an actress who played Mrs Kintner in the Steven Spielberg classic “Jaws”. After slapping Chief Brodie, a sheriff with responsibilities for public safety, she cries:

“I just found out that a girl got killed here last week and you knew, you knew there was a shark out there. You knew it was dangerous, but you let people go swimming anyway. You knew all those things and still my boy is dead now, and theres nothing you can do about it. My boy is dead. I wanted you to know that.”

As well as being a lament, hers is an ethical claim, arguing Chief Brodie ought to have acted differently. Yet the verb ought doesn’t feature in her complaint.  Instead, the verb to know is used five times in the five sentences, the only exception being the awful fact, too well known to both of them: “My boy is dead”. Her brief statement accuses Brodie repeatedly over what he knew, but ends with what she now wants him to know.

This ethical tension between what’s known and what’s made known is a central theme in my paper. It explores how we might improve public inquiries into healthcare failures such as the case of former nurse and serial child killer Lucy Letby or our national responses to the Covid pandemic. While our initial appraisal may be bleak, assuming that, again, lessons won’t be learned, I start by looking at where positive change may have occurred: around informed consent.

Informed consent allows us to choose our medical procedures, but based on sufficient prior knowledge of the pros and cons that are relevant to us. It hasn’t always been this way. Time was that patients would simply be told to sign the form to have the procedure. The exploration and  exchange of knowledge would have been far more limited.

Modern informed consent should take us somewhere different, beyond just permission or the exchange of technical knowledge. The U.K. Supreme Court has judged that, clinicians should consider what information would matter to this particular patient. In effect, the judges decided we have to use not just bioscience expertise but also skills in the humanities, the latter helping us to consider other minds and what might matter to them individually.

Viewed this way, one can see why informed consent, when obtained properly, can transform healthcare, by reducing an imbalance of knowledge and power between patients and clinicians. Returning to Mrs Kintner, had she known of the shark, she could have chosen to keep her son from the water. Instead, the institutions, represented by Chief Brodie and the local Mayor, took that decision from her.

My paper considers how we could benefit if our healthcare institutions and their leaders had to follow the example of clinicians and more often seek our informed consent. In the Letby case, managers would have had to imagine what prudent parents would want to know. They then had a choice immediately to squash the risk (by suspending Letby and investigating) or otherwise to disclose publicly the unresolved hazard.

On this account, the failure of Chief Brodie or hospital managers to disclose material risk is negligent, making them liable for physical harms that ensue. In the film, as often in healthcare inquiries, the focus is on tackling the physical threat, whether that’s killing the shark or condemning the rogue practitioner. But the harms done by a failure to obtain informed consent can also be massive. Had Mrs Kintner been told in advance, her boy would most likely be alive.

Reforming consent first needed us to name the problem. Medical paternalism was the term given, to describe how doctors would override or ignore patient preferences, often failing to provide sufficient information to them. In my paper, I name two more unfair knowledge imbalances, management feudalism and legal chokeholds, to describe respectively the excess of unaccountable managerial power and the choking legal secrecy that combine to keep us from being able to give informed consent to our health service provision. Turning this around, I consider how we can use the idea of informed consent to democratise management and to reform legal practice, thereby keeping us safer overall.

Imagine if Chief Brodie and the Mayor had had duties toward Mrs Kintner around informed consent; if they’d had obligations to inform her and the wider population as to the material risks or else face liability for the consequences. Imagine if the managers at Letby’s hospital had had similar duties. My case is that such duties to keep us in the know would also incentivise them to keep us safer.

Lee Fierro died in a care home from the complications of Covid-19. As public inquiries into the pandemic get underway, one wonders what she or her family knew.


Paper title: Reducing the risk of NHS disasters

Author: Edwin Jesudason

Affiliations: Consultant in Rehabilitation Medicine, Edinburgh, U.K.

Competing interests: None declare

Social media accounts of post author: @Edwin1432

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