Risky business – What to do when patients prefer not to know

Dr Rachel Birch, Medico-legal Consultant at Medical Protection, discusses a case where a patient did not want to know the risks of surgery and offers some practical advice on how best to manage such a scenario.

This situation is not uncommon and many doctors may identify with this scenario. Patients may be particularly anxious or may simply not want to think about the complications that might ensue. However, it is essential that doctors ensure that patients have sufficient information about a procedure to be able to provide or withhold consent. 

The Medical Council advises doctors that they must make sure that patients have given their consent before they provide any medical investigation, examination or treatment. Consent is required by law and patients have a right to provide consent, to decline consent and to withdraw consent at any stage of their treatment. 

The Medical Council goes on to advise that consent is not valid if the patient has not been given enough information to make a decision. It advises that the amount of information patients will need varies on a number of factors including: 

• The nature of the condition; 
• The type of investigation; 
• The complexity of the treatment; 
• The risks associated with the treatment or procedure (and the risks of non-treatment); and 
• The patient’s own wishes. 

The guidance states: “Patients will always need basic information about their condition, its investigation and treatment, and any serious or frequently-occurring risks. Patients will usually need more detailed information about procedures that carry a high risk of failure or adverse side-effects. They will also need more detailed information about an investigation for a condition that, if found to be present, could have serious consequences for the patient’s employment, social or personal life.” 

For example, a patient undergoing tendon surgery may seek more detailed information if they are a concert pianist than if they do not rely on their hands for their employment. A patient who is self-employed is likely to want to know how much time their recovery will take before they can restart work. 

When considering how much information to provide to a patient, the HSE’s National Consent Policy has helpful guidance as follows: 

“A general rule is to provide information that a reasonable person in the service user’s situation would expect to be told. This is in line with ethical and professional standards as well as the legal standard applied by the Irish courts.” Such information includes the likelihood of: 

• Side-effects or complications of an intervention; 
• Failure of an intervention to achieve the desired aim; and 
• The risks associated with taking no action or with taking an alternative approach. 

“A risk may be seen as material/significant if a reasonable person in the patient’s position, if warned of the risk, would attach significance to it. Such risks must be disclosed to the patient. Thus, common, even if minor, side-effects should be disclosed as should rare, but serious adverse outcomes. The latter include death, permanent disability (such as paralysis or blindness), permanent disfigurement, and chronic pain.” 

Doctors are reminded to provide information in a balanced way, using plain language, and avoiding jargon and medical terminology. Numerical data should be presented in a way that the patient can understand. It is important to consider how best to maximise the patient’s understanding. For example, visual aids may be helpful when describing surgery. Patient information leaflets can also be helpful, as can referring the patient to reputable health-related websites for further information. 

A further consideration is whether the patient might have communication needs, for example a visual or hearing impairment, a learning difficulty or if English is not their first language. It is important to take all steps to ensure that the patient can understand the discussion and the information provided to them. It is essential to also take into account any cultural or belief factors, which may have a bearing on how much information patients need. 

In the case scenario above, Mr S does not want to know any details about the surgery at all. It would be important to explore if there are any reasons for that, for example, does he have a significant anxiety disorder which is impacting his desire and ability to receive the necessary information? It would be helpful to explore whether he would like a relative or friend to be present as support during the discussion. It might also be an idea to spread out the time he is provided with the information, so that he has more time to come to terms with it. 

The Medical Council advises that taking consent involves a continuing dialogue with the patient, and that they should be given enough time before the treatment to consider their options and reach a decision. Patients should ideally be in a calm, unstressed state to be able to make a reasonable decision. 

Doctors must not keep back information because a patient might become upset or decide to refuse treatment. If the patient refuses to hear about the risks, the decision will not be informed and their consent may not be valid. 

One option open to Ms W is to invite Mr S back for further discussion in a few days’ time, perhaps with a friend or relative. However, it would be important to provide safety netting advice, such as the potential signs of hernia strangulation and when to seek urgent medical treatment. 

Whilst every adult patient is presumed to have the capacity to make decisions about their own healthcare, if a doctor is in any doubt about their capacity, then this should be assessed. To have capacity to make a decision a patient needs to be able to understand, retain, use or weigh up the information needed to make the decision and communicate their decision. Capacity is specific to the decision and therefore an assessment that a patient lacks the capacity to make one decision does not imply that they are unable to make other decisions. 

Adults lacking capacity to make a decision are entitled to the same respect for their dignity and personal integrity as anyone with full capacity. Doctors should seek and listen to their views and involve them in decisions about their healthcare to the extent that they are willing and able to be involved. 

If Mr S is lacking capacity to make an informed decision about hernia surgery, Ms W should take reasonable steps to find out if anyone else has the legal authority to make decisions on Mr S’s behalf. If there is no such person, she will have to decide: 

• What is in Mr S’s best interests, considering what treatment option is likely to give the best clinical benefit; 
• Mr S’s past and present wishes, if they are known; 
• Whether Mr S may regain capacity; 
• The views of any family members or friends who may know Mr S’s preferences and the views of any other treating health professionals. 

The Assisted Decision-Making (Capacity) Act 2015 is due to commence this summer and provides laws to support decision-making by adults who have difficulty in making decisions without help. Doctors should familiarise themselves with the law, noting that the HSE has provided a useful explanatory video. 

Doctors should document clearly any discussions held with patients and their relatives, detailing the consent process, the information provided to patients and any questions or responses that the patient provided. 

Situations where patients do not want to be provided with relevant information can be stressful and complex. In those cases it is always helpful and prudent to discuss the matter with your indemnifier, as they can assist in developing a constructive plan that will meet the patient’s needs.