Health literacy and informed consent

ONE common factor still often cited in clinical negligence claims associated with medical or dental treatment is a lack of valid informed consent.

A simple search of MDDUS case files will yield dozens of examples from minor dental extractions to complex surgical procedures and interventional therapies. This is surprising given the emphasis now placed on shared decision-making in healthcare.

The GMC states in its consent guidance: “For a relationship between doctor and patient to be effective, it should be a partnership based on openness, trust and good communication. Each person has a role to play in making decisions about treatment or care.”

Yet the GMC acknowledges there can be barriers to effective communication, not least the level of understanding among some patients of even basic medical concepts. The term ‘health literacy’ has been defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.”

In 2012 a study by researchers at London South Bank University found that 43 per cent of people in England aged between age 16 and 65 are unable to “effectively understand and use” basic health information. The figure rose to 61 per cent when the information also required maths skills. The study looked at how patients process content such as health screening posters, medicine labels and letters from GPs.

Low health literacy is not just a problem for patients with limited education or reading ability but can also be found in individuals who may be highly literate in other areas but have difficulty understanding medical terminology and jargon. Patients may be embarrassed to admit their lack of understanding and sometimes matters can be further complicated by anxiety or confusion associated with pain or drug treatments.

The GMC guidance points out that how you discuss a patient’s diagnosis, prognosis and treatment options can be as important as the information itself. Doctors should share information in a way that the patient can make sense of it, and if necessary this discussion should be supported using written material, visual or other aids. The guidance states: “Before accepting a patient’s consent, you must consider whether they have been given the information they want or need, and how well they understand the details and implications of what is proposed. This is more important than how their consent is expressed or recorded.”

Guidance for dentists is similar. The GDC states that you must “make sure that patients (or their representatives) understand the decisions they are being asked to make” and provide sufficient information and a reasonable amount of time to consider that information in order to make a decision. Consent must be tailored to “each patient’s needs” and information provided in a format that can be easily understood.

Below are some other points to consider in ensuring that patient consent is informed and valid:

• Make no assumptions about what a patient may want or need to know.
• Use clear, simple and consistent language when discussing risks with patients.
• Speak slowly and avoid complex terminology or medical jargon.
• Use common analogies – e.g. a patient might better understand a joint problem if compared with a hinge.
• Just because a patient is being agreeable do not assume he or she understands what you are explaining or shares your perception of that information.
• Ask patients to put the information in their own words to check comprehension.
• Consider using patient information leaflets, advocacy services, expert patient programmes or support groups for people with specific conditions but do not assume patients will have read a hand-out or information sheet.
• Go over hand-outs or other written aids with the patient and circle important points.
• Involve other healthcare staff who may have more time, experience and resources to inform the patient.
• Try to foster an open atmosphere where questions are welcome.
• Remember that too much information can be as unhelpful as too little.
• Remember that a patient’s ability to process and retain information can be affected by factors such as anxiety, pain or the effects of clinical medication.
• Be mindful of questions of capacity in seeking patient consent.

Finally, it is important to recognise that each patient is different and no one approach to obtaining consent will fit all. Members are encouraged to call an MDDUS adviser with any concerns in regard to patient consent.

ACTION: Consent is only valid if patients fully comprehend what they are agreeing to. Be sensitive to the level of understanding among some patients of even basic medical concepts.

Essential reading

• GMC: Consent guidance: patients and doctors making decisions together

• GDC: Standards for the Dental Team