With the increasing focus on the rights of the person with a disability, the question of having the person’s informed consent arises in certain circumstances. For service providers, informed consent is important in four areas: gathering and accessing personal information; making financial decisions; initiating and continuing medical treatment; and protecting the person from sexual exploitation.
But the first question is: Whose consent are we seeking? Are we asking for their parents’ agreement or the agreement of the person with a disability? The answer is that once the person is over 18 years of age—is not a ward of court, and has the capacity to understand, in a general sense, the implications of their decision—then the decision rests with the person themselves.
Of course, levels of understanding will vary and there is a key role for the person who knows them best to act as an advocate and supporter. The greater the difficulty the person has understanding the consent issue, the more significant will be the role of the advocate. In very many cases, the advocate will be the mother, or in later life a sibling. But the advocate’s role in consent issues is to reflect the preferences and best interest of the person, and not their own.
Personal information is protected under the Data Protection Act, and Irish law identifies a number of areas of personal information that receive specific protection including medical information, financial information, information held by a solicitor, employment details, and family privacy. However this protection is not absolute in all circumstances. For example, in the event of a criminal investigation, the police would have access to any relevant information; and in the event of tax evasion, the Revenue Commissioners would have access to financial and legal records. Of course, any of us may freely choose to share even our most intimate details—with a stranger on a long train journey, with half the world on confessional TV, or with readers of magazine interviews or autobiographies. That is our choice.
What does informed consent mean?
There are a number of requirements to be met before we can say the person has given ‘informed consent’ to share information, make financial decisions, undergo medical treatment, or engage in consensual sexual activity. The four basic requirements for informed consent are:
- The person must have the capacity to give consent.
- The consent must be voluntarily given.
- The person must be adequately informed before consenting.
- Giving consent is a process, not a once-off decision.
Capacity to give consent
The person has no capacity to give consent if they have no understanding of what’s being asked. Their understanding may be limited by the severity of their learning disability, or their lack of any similar experience to which to relate this decision. It may also be limited by the inability of the requester to explain what is involved. We should not readily assume that because the person has no speech, they have no views or concerns or preferences in the matter to be decided.
Some decisions are more significant and more complex that others and require greater levels of understanding. For example, in relation to consent to have sexual activity with another adult, Irish legislation sets a specific test for capacity to give consent: the person is incapable of giving consent if the person is incapable of living an independent life or of guarding against serious exploitation (Criminal Law (Sexual Offences) Act, 1993, s.5).
Consent is voluntary when there is no coercion or threats of negative consequences for withholding consent. Mild levels of coercion are commonly used against people with disabilities—withholding of affirmation or affection, verbal abuse, strong encouragement by authority figures—and such behaviour undermines voluntary consent. This does not mean that the pros and cons of any decision should not be fully discussed and debated, but that this should be done in a way that respects the ultimate autonomy of the person to decide for him/herself-
This means being informed of all the options; being told the down-side as well as the advantages of each course of action; and having them explained in a way that is meaningful to the person, taking into account how the person communicates, and what related prior experiences they have for comparison. Any experience which would help the person understand what is at stake might be worth undertaking. Perhaps a programme of learning is called for. The question is: How can we help the person understand the options they have to choose from?
Because of the strong emphasis placed on compliance in their lives, the majority of people with learning difficulties are affirmers. When faced with a yes–no question, the answer is yes. A minority are challengers. Their initial answer is automatically no. To get past this automatic pattern of responding, and to understand what the decision entails, usually takes time—time to explore how they really feel, to learn what is entailed, to talk with family and friends. The bigger the decision, the more time should be available.
Secondly, and to the considerable irritation of service staff, the person has the right to change their mind, even after the process has begun. So where the person has begun a course of treatment, unless it would be plainly dangerous to abort the treatment, the person is entitled to stop at any time. Similarly, with access to personal information—with financial decisions—with sexual intimacy.
The issue of informed consent touches on some very basic principles—the dignity and autonomy of every adult, their right to be treated as an adult despite their limited understanding or poor social skills, the slow shift in service thinking from benign paternalism to individual rights. Such changes take time. Staff and parents are used to taking shortcuts, to deciding what is in the person’s best interests without really consulting the person. And yet even individuals with severe learning disabilities and no speech whatever, have a varied palette of responses that indicate to those who know them best, a wide range of choices and preferences.
Our first step in respecting and valuing a person is to listen attentively to them—listening with our eyes as well as with our ears.