BES2003 Nurses Session Ethical Dilemmas (3 abstracts)
Department of Paediatric Haematology/Oncology, Barts and The London School of Medicine, London, UK
Patients are increasingly anxious to know what is being done to them, and the matter of properly informed consent has become a politically sensitive topic. From a clinician's point of view there are four aspects to consider; first, consent to examination and treatment; secondly consent to the use of biological samples for research or other purposes; thirdly consent to necropsy and the retention of post-mortem material; and fourthly consent to the use of personal clinical information. The challenge is to develop protocols that respect the right to autonomy and privacy of the individual without creating barriers to research, audit and epidemiology. To achieve this requires a consensus between lawyers, politicians, civil servants, patient advocates and doctors. The process is continuing, and there are several matters surrounding the use of specimens and the confidentiality of data that are yet to be resolved by authoritative guidance from the UK Departments of Health.
Despite all the current confusion, there is a single guiding principle on consent that clinicians can seize upon. This is the simple need to get patients to understand and agree to any proposed treatment or examination, or the use of any samples or data. Few refuse, and it need not be a laborious process. The secret about the use of samples or data is to think about it in advance. Where patients cannot understand, the need is to gain the support of the immediate family, or parents in the case of children. And when patients have died, there is a similar need for the family to understand and agree to any post-mortem studies outside those required by a coroner or fiscal.
All this might seem obvious, but the interpretation of the word 'understand' has changed in recent years. And agreement without understanding is, of course, not consent.