How much transparency?

By Dominic Wilkinson (Twitter: @Neonatalethics)

There are reports in the press this week that the remains of 86 unborn fetuses were kept in a UK hospital mortuary for months or even years longer than they should have been. The majority were fetuses less than 12 weeks gestation. According to the report, this arose because of administrative error and a failure to obtain the necessary permissions for cremation.

The hospital has publicly apologized, and set up an enquiry into the error. They are planning to cremate the remaining fetuses. However, they have decided not to contact all of the families and women whose fetal remains were kept on the basis that this would likely cause a greater amount of distress.

Is this the right approach? Guidelines and teaching in medical schools encourage health-care professionals and institutions to own up to their errors and disclose them to patients. Is it justifiable then to not reveal errors on the grounds that this would be too upsetting? How much transparency is desirable in healthcare?

This question arises commonly in medical practice. Doctors, nurses, physiotherapists and pharmacists all make mistakes. Indeed all of us in our professional lives make mistakes. The question is not whether mistakes happen – rather it is what we can do to prevent them and what we should do when they do happen.

One of the relatively unique features of the healthcare profession is the emphasis on transparency about error. Doctors and nurses are exhorted to come clean, to own up to mistakes when they occur. This is understandable (though not easy) when the mistakes have led to significant harm to the patient. However most mistakes that occur in every day medical care are small and unlikely to cause harm. For example, a nurse might miss or delay or give an extra dose of medication. A doctor might prescribe the wrong dose of a drug (by a small degree). A test result may not be followed up in a timely manner. Do doctors need to own up to these mistakes? Some have argued that doctors should disclose errors even potentially when the mistake have caused no harm. The NHS constitution appears to support this “The NHS also commits when mistakes happen to acknowledge them, apologise, explain what went wrong and put things right quickly and effectively.” Some have advocated for a statutory ‘duty of candour’.

However, it is difficult to think of any other profession that would behave in this way.* We do not expect our politicians, engineers, pilots, lawyers, teachers or mechanics to perform a mea culpa every time that they make any degree of error. So why should health professionals?

There are several arguments in favour of a philosophy of ultra-transparency for medical error. One reason is that identifying errors is important for preventing future mistakes. Although errors are inevitable, they can be reduced. Owning up to mistakes is necessary if lessons are to be learned. Although an individual error may not have led to harm, the same error in a different circumstance could well be harmful. Second, some argue that admitting to mistakes encourages trust between patients and doctors. There is some evidence to support this: a study from 2006 found that non-disclosure of error (that the patient discovered) reduced patient trust and satisfaction. Third, disclosure is often said to reduce the risk of patients seeking legal remedy.

These arguments provide strong reasons for doctors to disclose harmful medical errors. However, it is less clear that they apply to errors that have not led to harm. There is a need to have a medical culture of reporting, investigating and addressing errors whenever they occur. Yet, disclosure to patients is not necessary in order to report and address errors. Complete candour and openness could lead to patients trusting their doctors more. However, it also seems plausible that disclosure of minor errors would undermine trust in health professionals and in the profession generally. The frequency of apologies may render them meaningless. Finally, disclosure of non-harmful events would be unnecessary to reduce litigation, since in the absence of demonstrable harm, legal action would usually not be successful.

Existing systems in the NHS encourage a nuanced approach to the disclosure of medical errors. The national ‘Being Open’ framework notes that “prevented patient safety incidents and ‘no harm’ incidents” do not need to be disclosed. Professionals are advised to consider individual circumstances and the best interests of the patient. This sounds simple, but it will not always be straightforward. What does it mean for the case at the start of this post – where fetal remains were kept in a mortuary for too long? The hospital’s approach of not contacting women to notify them of the error seems on the face of it justified. There is no discernible harm to the fetuses. There is a potential harm to women who discover and are distressed to learn that their unborn children remained in a mortuary for a prolonged period. Yet this would only be realized if women learned of the incident through disclosure (or through media attention).

Medical care should aim to be translucent, but perhaps not always transparent. There are some things that we are better off not seeing.

 

 

 

*One obvious exception to this are journalists, who regularly publish corrections to material, even if the errors are small and apparently non-significant. We might think that the special importance of accuracy in published information means that journalists should be bound by ultratransparency. However, it is not clear that errors of omission are necessarily disclosed by journalists in the same way.

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