Browse site A to Z

A right to be told?

(If you're having issues with playing this video, please try a different browser.)

Mr Gallardo complained that he had not been told of his malignant diagnosis, and that a plan for following his postoperative course had not been put in place. At the age of 28, he had presented with what appeared to be a gastric ulcer, but proved at operation in 2001 to be a malignant gastrointestinal stromal tumour (GIST) requiring subtotal gastrectomy. His early postoperative course was complicated by acute appendicitis and two further laparotomies for sepsis and obstruction, all necessitating six weeks intensive and then high-dependency care.

Leaving the hospital apparently oblivious of his malignant condition, he had no follow up clinical review or imaging, only to present nine years later with recurrent disease.

The court hearing his claim found that he had not been told that his operation had revealed a malignancy, that he should have been told, and that follow up arrangements should have been put in place.

This is not a surprising conclusion, and reflects the energy that all clinicians expend to ensure that interventions are followed up according to the diagnosis that is reached. The case is nonetheless of interest because it reveals the creation of a judicial standard for clinical follow up, which is rare and bears scrutiny.

The judge, Hughes J, applied the familiar rules for information disclosure prior to consent for any clinical intervention (set out, as we are all well aware, in the GMC guidelines from June 2008) to information that we need to provide following that intervention. Whilst you may consider that this strains the sinews of ‘informed consent’ to breaking point, Hughes J articulated an obligation by analogy: to provide the patient with ‘… a right to be informed of the outcome of treatment, the prognosis, and what the follow up care and treatment options are. Information should only be withheld in exceptional circumstances and for clear and persuasive therapeutic reasons’.

In finding this patient’s right to be told, the court also provides guidance on when the post-diagnosis disclosure should occur: ‘There are several factors that may affect timing, for example, the anxiety of the patient to be told of the outcome, the patient’s condition and ability to participate in the discussion, the seriousness of the information…and the availability of close family members to offer support and comfort when difficult news has to be given’.

The practical implications of creating this ‘right to be told’ could take some time to crystallise, and during that interval, an appeal or subsequent judgement overturning this decision may emerge. For instance, is there to be a countervailing right ‘not to know’? Does the ‘right to be told’ create an ‘obligation to tell’? And at what threshold of diagnosis does that obligation become engaged; must a serum sodium of 134 mmols/l be disclosed, technically diagnosing ‘hyponatraemia’? Any clinician can easily identify simple instances where the right to know, if it exists at all, would in good faith be frustrated by the exigencies of clinical practice.

But be slow to ridicule. Notwithstanding the quality of the legal foundations upon which this judgement is based, it should give us pause for thought in terms of how we ensure that our patients are properly informed of clinical findings, and what should be done as a consequence. Irrespective of whether there is a tangible ‘right’ in these circumstances, it is self-evidently good practice to inform patients of their condition and put into place a strategy for management, of which we are certain they are aware. Few of us would wish to remain oblivious to a malignant diagnosis… perhaps even fewer relishing the risk of no follow up in those circumstances.

Robert Wheeler

Department of clinical law, October 2018