By Patrick Burch.
As a GP I spend a significant proportion of time interpreting blood results. When a patient has any test performed, they should understand why it is being done and have consented to it. However, in many cases, perhaps the majority, patients are not fully aware what blood tests are being done and what abnormalities are being looked for. This can be for a number of reasons. One of the principle reasons is that patients with chronic disease e.g. high blood pressure have regular “routine” blood tests. In the UK, a key driver for these “routine” tests is payment to practices for disease monitoring. In order to be paid, practices must do certain tests regularly on all patients with a particular condition. The monitoring consist of a number of different tests that are suitable for the average or “standard” patient with that condition. The patient will know they are having tests to monitor their condition, but often will not know exactly what is being tested for.
This leaves the clinician, who is interpreting the results of these tests, to decide what to do when one of them comes back labelled as abnormal. When faced with a test result outside of the normal range, clinicians exercise judgement about what they consider “normal” or “satisfactory” for a particular patient. A result that may be worrying in a 21 year old lady, may not be worrying in an 80 year old man. They also exercise judgement in what they communicate to the patient about the results. In certain circumstances a patient may, for instance, have a mildly raised bilirubin or mildly decreased albumin and the clinician may file the result as “satisfactory” and not inform the patient. In doing this the clinician is filtering out the “noise” that is generated from carrying out tests and using an individual patient’s circumstances to contextualise what is “normal”.
What clinicians are (or should be) doing, when making these judgements not to inform patients, is deciding whether the result is of relevance to the patient. The clinician needs to ask themselves one question; does this abnormal result signify a possibility that the patient is going to develop a clinically significant disease? If the answer to this question is no, what is the purpose of informing them?
To muddy the waters further, some abnormal results, such as certain blood sugar levels have been labelled as “pre-diseases”. A “pre-disease” is “diagnosed” when a test is abnormal but does not quite reach the threshold of a disease. A pre-disease is a symptom free risk factor, or precursor of a disease. It is not a disease state in its own right. The purpose of labelling patients with pre-disease is so they can take action to prevent progression to a fully-fledged disease, such as stopping pre-diabetes from becoming diabetes. But what if a patient is never going to develop the disease? What is the purpose of telling them they have a pre-disease? Perhaps more importantly, is there potential harm in telling them?
Labelling somebody as having a medical condition carries a psychological burden in itself. If patients are unable to engage in recommended behaviour change (such as weight loss in pre-diabetes) this may have negative consequences, i.e. engendering a feeling of being ‘a failure’. If the label leads to further follow up this may also place a burden on patients. There are also considerable implications for the use of health resources if the labelling of individuals with pre-disease requires further follow up and intervention.
Looking specifically at the case of pre-diabetes, our paper explores the ethics of not informing certain groups of patients when they are discovered to have pre-diabetes. Based on prior research into how primary care clinicians treat pre-diabetes, the paper discusses an ethical framework for decision making that clinicians take on a daily basis. Ideally patients and GPs should more carefully consider when to test patients for diabetes. However, once a result exists, the clinician needs to excise judgement in how to interpret it for the patient. Doctors have always interpreted findings and results for patients. It would be wrong to simply hand over the results to the patient and let them decide what to do with them. Clinicians have to make judgements as to what is in the best interest of each patient and what to tell them about each set of results. Is this paternalism or simply the practice of medicine?
Authors: Patrick Burch and Sore Holm
Affiliations: PB: Centre for Primary Care, The University of Manchester, Manchester, UK. SH: Centre for Social Ethics and Policy, School of Law, University of Manchester, Manchester, UK.
Competing interests: None
Social media accounts of blogpost author: @PatrickBurch