Capacity and Consent

Capacity and consent are complicated in people with intellectual disabilities by literacy problems, communication difficulties and unsubstantiated assumptions by some professionals, as well as by the fact that some people with intellectual disabilities will not be competent to make some decisions regarding medication use.

The test of capacity currently applied in the Irish Courts is the ‘C test’ which is in three parts all of which must be fulfilled for the patient to be deemed competent to make the decision they are being asked to consider:

1. Does the person comprehend and retain treatment information? 2. Does the patient believe that information?

3. Does the patient weigh that information, balancing risks and needs, to arrive at a choice?

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• Assume capacity. All adults have capacity unless and until they are shown not

to. If the decision is a complex one it may be useful to consider the ethical issues.

• Capacity refers to the ability to make a particular decision at a particular time. It

is wrong to refer to a person as having or lacking capacity for all decisions.

• Capacity can vary in the same person for different decisions and can fluctuate

over time. Capacity is decision specific.

• A person with capacity has the right to refuse treatment. People have the right

to make bad decisions. If a person does not consent, the reasons for this should be explored.

• A health professional such as a pharmacist has a duty of care to patients. A

person should not be denied treatment that is necessary to them merely because they are not competent to consent.

• If an adult lacks capacity the health professional has a duty to provide

treatment and care in the best interests of that adult, even if the person does not agree.

• In Irish Law nobody can consent on behalf of another adult.

• If you force treatment on a person who has capacity you may be assaulting

them.

• If you deny treatment to a person who lacks capacity you may be neglecting

them.

• The professional giving the treatment is responsible for assessing the patient's

capacity, and for asking for any assistance they need to do so. It is the

responsibility of the health professional who will be performing the intervention to make sure the patient understands in broad terms what the intervention is for, the main risks and benefits of the intervention and what may happen if the patient does not have the treatment.

• Capacity depends on understanding.

• Understanding depends on effective communication and accessible information

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• Even people who lack capacity may want and have the right to receive

information. Health professionals such as pharmacists need to give people permission to disagree with the “expert” without withholding expertise.

• Consent obtained by force (under duress) is not valid. The differences in power

between patients and health professionals as well as between cared for and care-giver are a common, perhaps inevitable, part of these relationships.

• Consent can be shown behaviourally, for example a person with intellectual

disability may pull up his sleeve to allow the administration of an injection or a person with intellectual disability may scream and pull away when the injection is about to be given.

The medication use process in the population with intellectual disabilities contains a tension between the desire of professional staff, prescribers, pharmacists, social workers and others to promote choice and independence in relation to medication use on one hand, and on the other hand to protect people with intellectual disabilities from abuse and neglect in relation to medication use that may result from excessive use, underuse, inappropriate use and poor monitoring. The reality of the risk concerning medication use in the lives of people with intellectual disabilities, that comes with having control of medication use vested in other persons who provide support, must be recognised. It must also be recognized that people with intellectual disabilities may be overly controlled through risk management approaches which ineffectively

acknowledge their right to self determination in the medication use process in an effort to keep them safe.

The Assisted Decision-Making (Capacity) Bill (2013) (formerly referred to as the Mental Capacity Bill) that was published in July 2013, contains proposals to provide a modern statutory framework supporting decision-making by adults who have difficulty in making decisions unaided. It will repeal the Marriage of Lunatics Act 1811 and cause the Lunacy Regulation (Ireland) Act 1871 to cease to have effect. The replacement of the Wards of Court system for adults is provided for in the Bill. The Wards of Court System is the existing mechanism for managing the affairs of persons whose capacity is impaired. The Bill will be a key step in enabling ratification of the UN Convention on the Rights of Persons with Disabilities (DJ&E, 2014) and should impact on many aspects of medical care in the Irish state including medication use in people with intellectual disabilities and behaviour disorders.

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The Irish Human Rights Commission has however included the following observations on the Assisted Decision-Making (Capacity) Bill 2013 that should be of interest to those pharmacists and others concerned with human rights in the care of people with

intellectual disabilities in Ireland.

‘The distinction between legal capacity and mental capacity be clarified within the Bill, so as to ensure a person’s legal capacity is guaranteed and is not infringed on the basis of their having diminished or impaired mental capacity’ (IHRC, 2014).