A letter to the editor from reader A was received by our journal concerning a published case history from author B. Reader A questioned the choice of treatment and author B's conclusion regarding the reason why the patient died. We believe this case raises at least two interesting questions.
Firstly, the patient, or in this case the patient's relatives, could possibly suffer an additional burden by having their understanding of the course of events challenged. Speculations about treatment and course of events from health personnel or others, who do not know the patient beyond the published history, may expose the patient/relatives to groundless concerns. Our journal requires consent for publication from the patient/relative(s) when publishing case histories, but the consent applies to the published article as such. Hence it does not include further discussion or comments from others in the journal or elsewhere after publication. One could argue that this is implicit when giving consent, but one cannot expect patients to know or reflect upon such matters. In other words, is the consent truly informed?
Secondly, the authors have access to a lot more medical information about the patient than they have chosen to publish. The consent only applies to the published material. In further discussions, they cannot answer properly without breeching confidentiality or collect further consent. Hereby the risk of a delayed debate, a debate that gets too general and in which the opponents (who are only able to speculate about the further details) get the last word.
The case was resolved by carefully moderating the letter to the editor in cooperation with reader A.
Planned further steps by the journal for future cases:
• Such debates must be modified with the patient's interest in mind.
• Include a sentence in the consent form informing the patient about the possibilities of post publication debate.
• Possibly include a disclaimer on such debates, informing about the limits of such debate?
• Possibly include a reminder about the patient's perspective in the author guidelines for debate?
Question(s) for the COPE Forum
• Is it justifiable, ethically, to let readers speculate on the patient's diagnosis, the choice of treatment, etc?
• Have any of the Forum members had similar discussions in their respective journals?
• Are the steps taken/planned reasonable?
• Does the Forum have additional advice on how we can avoid such problems in the future?
The Forum suggested that the steps outlined by the journal as a way of proceeding are good and reasonable. If the post-publication comments are informed, then it may be fine to publish them but this must be done carefully. Peer review can be helpful here.
Letters to the editor commenting on case reports could include disclaimers, and it is important to remind people to think about the patient and their family.
While an ethical framework is needed, the journal also has a responsibility to encourage debate, but in a sensitive and cautious way. For example, this can be an opportunity to allow input from people with whom the patient might not ever have access. The framework within which this happens is important.
The most intriguing case reports often have an aura of ‘mystery’, treading a fine line between the ‘obvious’ versus the ‘suspense’ of whether the patient did get the right treatment but this should not compromise accurate reporting or condoning poor practice. Authors need to be upfront about the details of the case, including the diagnosis. Authors should not disclose additional information after publication. Post-publication speculation must be handled carefully as it can be distressing for the patient and the patient’s family.
COPE has a discussion document on Best Practice for Consent for Publishing Medical Case Reports.
What patients can expect when they give consent will be included in the document when finalised. Patients should be warned that there may be academic discussion after the case is published.
The editor considers the specific case closed, and the journal is working on implementing the planned steps outlined in the case.