Personal informed choice is one of the most important principles in screening.
People can decide whether or not to have screening based on the information we provide and their own attitudes and values.
The standard operating procedures for abdominal aortic aneurysm (AAA) screening include the following statement:
Men should be able to make a genuinely informed choice based on an understanding of why they are attending for screening, the risks involved and associated with a positive result.
The national programme also provides carefully considered leaflets and letters to help achieve this ‘genuinely informed choice’. But how much further should local AAA screening providers go to make sure screening choices are informed?
Is there a test for patients to pass?
I have managed the local South Devon and Exeter AAA screening service since 2009 and believe genuinely informed choice exists on a spectrum of understanding. The information someone wants, or can assimilate, will be as individual as they are.
When a patient attends for screening and gives their consent we don’t test their understanding of the whole process, except maybe when we identify that a patient has a learning disability.
Consent for individuals with a learning disability
The Mental Capacity Act states:
There must always be the presumption that people you provide care or treatment for have capacity to make decisions for themselves.
The government provides advice for healthcare staff on making decisions about mental capacity.
The Act says a person is unable to make a particular decision if they cannot do one or more of the following 4 things.
- Understand information given to them.
- Retain that information long enough to be able to make the decision.
- Weigh up the information available to make the decision.
- Communicate their decision.
As screening providers I believe we perhaps sometimes raise the threshold for mental capacity just because a patient has been identified as having a learning disability.
Lack of capacity and acting in best interests
If, after an assessment of capacity, it’s decided that a patient can’t consent, are we right to say they shouldn’t be screened without hearing from their GP and other agencies first?
Getting this input will cause an inevitable delay, not to mention inconveniencing a patient (and carer) who have made time to attend.
The Act provides the following framework for dealing with mental capacity issues.
- Identify the decision to be taken.
- Assess capacity to consent.
- Identify if there are other people involved in the decision making (for example people who have power of attorney).
- Examine what actions can be taken to help that person consent.
- Assess least restrictive course of action.
We offer screening to everyone in a target group. We don’t ask a GP to become involved with a best interest decision for any other patients, so always delaying screening for someone who has a learning disability is automatically discriminating and restrictive. If a patient and carer have attended and there is no technical barrier or coercion to screening, why do we assume screening is not in their best interests? Are we just discriminating based on our own prejudices?
The Act provides legal protection from liability for carrying out certain actions in connection with the care and treatment of people who lack capacity to consent, provided that:
- you have observed the principles of the Act
- you have carried out an assessment of capacity and reasonably believe the person lacks capacity in relation to the matter in question
- you reasonably believe the action you have taken is in the best interests of the person
We should of course consider issues of consent but we should not restrict access to healthcare based on an assumed or real lack of capacity to consent.
In South Devon and Exeter, we use a standard trust proforma to assess capacity and then record the best interest decision. This means patients can be offered the least restrictive option, which may be that screening goes ahead without consent.
We agreed this approach after discussions with our trust’s mental capacity lead, primary learning disability liaison nurses and others. Other local screening providers should also involve their mental capacity leads before agreeing local policy.
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