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Vulnerable Adults: Assessing Capacity to Consent In: Clinical Psychology Forum 158: 19-23 Feb 2006

Dr Suzanne Conboy-Hill

Consultant Psychologist for People with Learning Disabilities

CLDT 86 Denmark Villas Hove BN3 3TY Tel: 01273 206647 Email: Suzanne.conboyhill@sussexpartnership.nhs.uk

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Vulnerable Adults: Assessing Capacity to Consent

Abstract The new Mental Capacity Bill (2004) says that an adult’s capacity to give or withhold consent to any action affecting them is decision-specific, not diagnosis based, but how do you assess capacity?

The Legislation The Mental Capacity Bill (2004) and Department of Health guidelines (2001) both make clear some central requirements regarding consent. To be valid, consent must be obtained from someone with capacity who has been informed about the proposed procedure or action, its purpose, risks and consequences, and it must be voluntary. A signature is not required but should indicate a prior explanation and discussion. Additionally, a decision that might be thought irrational by others is not evidence of incapacity. To give or withhold consent, a person needs to be able to take in and retain the information material to the decision, to weigh up that information, and to communicate their decision at the appropriate time to the person who needs to know. Retention does not have to be permanent but must be demonstrable at the time of the decision. People unable to do this are regarded as lacking capacity in this instance only so that any treatment or action thought essential must be carried out only if it is in their best interests. The Mental Capacity Bill requires the assumption of capacity unless it can be proven otherwise. It is decision-specific and not dependent on diagnosis or prevailing condition. This is gratifying for groups who might otherwise find themselves regarded as lacking capacity by virtue of diagnosis or other hypothetical argument but has implications for professionals who may have reason to suspect incapacity that can only be demonstrated by challenging the primary assumption. People whose acquiescence, suggestibility, social powerlessness and passivity might cause them to be led into agreeing without proper understanding are at risk of becoming recipients of expedient actions driven by the wishes of more powerful others. The Draft Code of Practice (Department for Constitutional Affairs 2004) has gone some way towards resolution by making it clear that there is a ‘diagnostic threshold’ for this challenge in the form of a mental disability. However, its effect on the functional aspects of consent must be demonstrated and the burden of proof is on the person who asserts that capacity is lacking.

From the House of Lords to the house down the street In this context, our concern has been to follow the principles underpinning discussion documents and guidelines from ‘Who Decides?’ and ‘Making Decisions’ (Lord Chancellor’s Department 1997 and 1999) through to more recent publications by the Department of Health. These are unanimous in requiring effective information-giving in the first instance and consultation by the treating clinician with professionals and carers with regard to evidence for incapacity and best interests (see DoH website for guidelines, model consent forms and other information). While accessible information-giving is something that should be central to our

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practice, a methodology for assessing decision-specific capacity was not readily available. There is a small body of research aimed at developing tools for the evaluation of capacity (see Morris, Niederbuhl, and Mahr 1993; Arscott, Dagnan, and Kroese 1999) and others that examine the intellectual requirements likely to best support capacity (e.g. Holland, Clare and Gunn 1999; Arscott, Dagnan, and Kroese 1998). The tools described are dependant on pre-determined scenarios from which a series of questions has been derived so that the methodology is essentially based in a population paradigm that does not lend itself to the highly variable and individualistic contexts faced by most clinicians and service-users. In addition, although most researchers acknowledge problems of acquiescence, voluntariness, and independence, there is little that addresses the process itself of eliciting the required information without contaminating the person’s account (although see Conboy-Hill 2000, 2001). Consequently, it is still possible for someone who lacks understanding to agree to a procedure by virtue of acquiescent responding to a series of leading or closed questions. Similarly, a person with communication difficulties who requires expert mediation might be assumed to lack capacity through failure to respond under ‘normal’ circumstances. Our response to this, slowly introduced over the last 6 years, has been to encourage local clinicians to assist us in giving clear and full information to vulnerable adults and then to assess the person’s knowledge about what is going to happen and why, using a protocol based on the cognitive interview (CI), now used extensively by the police service to interview witnesses. For the most part, this has been used in medical or surgical interventions but we have also addressed issues such as access by a mother to her adult son’s life insurance documents, a process of shared ownership, making a Will, *marriage and sexual relationships, and a child residency order. Training is underway with social work assessors to look at consent to care plans and the sharing of information.

The Process • When a person, thought by virtue of their service needs and dependencies or

decision track-record, is offered a form of intervention for which they are required to give consent, those in contact with them make a referral to the psychology service.

• We ask for full details of the procedure, including risks, consequences, and the precise words used; suggest that the treating clinician or dentist makes a tape recording of the consultation; and send a copy of our guidelines so that people know what will happen and why we need all this information. Our leaflets, ‘What is consent?’ and ‘How to support someone to give consent’, are now available to staff, clinicians and service-users. The nursing team has also produced a booklet about dental treatment into which people can write their own information, and others about hospital admission and cervical smears will be available soon.

• We invite the person to come to interview about their treatment. This is timed to take place no more than a week before their treatment is due so that it meets the requirement as nearly as possible that the person should

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have retained the information to the point at which they need to make the decision.

• During the waiting time, the person is offered frequent opportunities to go through the information with someone who can help them understand it. The Dental booklet has proved invaluable in this, giving people images they can relate to and allowing for personalised written information to be added. The Dental Hospital has also begun using it to support their own assessment of consent, having now had some experience of the procedure and the reports that come from our interviews.

• On the day of the interview, a schedule of headings is drawn up to cover all the elements that would be essential to valid consent. This includes the following:

The proposed procedure - what is going to happen; surgery, a blood test, tooth extraction. Purpose – the reason for this. Risks – including those of anaesthetic. Other options – including doing nothing. Consequences – discomfort, medication, stay in hospital, restricted movement and so on. Choice – to proceed or not, knowing you can say no. Consequences of not going ahead – what happens if you do say no. Expected outcome – what the benefits should be. Any other issue contained in the information requested at the initial referral.

• The interview. This is based on the CI, developed for witness interviews and an extension of the Memorandum of Good Practice (MOGP) protocols used to gain uncontaminated evidence from victims. Research as to its efficacy is now extensive (see Milne and Bull 1999) and includes a number of vulnerable groups. For us, the basic elements are these:

Context reinstatement – this is a key feature of the CI in which the interviewee is asked to put themselves back into the situation to be recalled. For us, this is the person’s session with the consultant, dentist, support worker, nurse or family member in which the information was given to them and rehearsed. Free report – a way of eliciting an unprompted account of the procedure in the person’s own words. This is used later in the structured component to develop incomplete themes. Semi-Structured interview – this comes from the headings made earlier and from the undeveloped elements the person has just reported. The aim is to ensure that all areas essential to consent are fully explored.

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The critical technique is the use of open, non-leading questions that incorporate the words the person has already used along with those they have been given as part of the information they should have.

Again the dental booklet has been invaluable, allowing us to work through the pictures and text, carefully questioning the person about the meaning of both and gaining an understanding of how they make sense of it.

• Following the interview, a report is sent to the treating clinician giving details of the person’s knowledge and an opinion on whether that seems to be sufficient to underpin valid consent. We do not necessarily offer an opinion about whether a person is consenting because we are not asking that question, nor are we the appropriate people to hear the decision, but we will pass on evidence of a decision if it has been offered, whether or not the person seems to have capacity. In addition, we can offer an opinion about whether the information the person has recounted will, ‘on balance of probabilities’ (see Mental Capacity Bill Part 1, Section 2(3)) contribute to a valid decision and it is clear that, at times, it may not. For instance, a person with an Autistic Spectrum Disorder may be able to recall the relevant information but have no sense of its meaning or implication; while others can read, and may have handwritten, information in their booklet but are unable to extract meaning. Additionally, we can advise the treating clinician about the likelihood of the person communicating their decision on the day or the conditions that would best facilitate this.

• When capacity seems to be lacking, we are able to offer support to treating clinicians where ‘best interests’ protocols need to be invoked. Asking whether a procedure is urgent, essential or desirable allows decisions to be made about the wisdom of going ahead with someone who not only lacks capacity but also seems to be resistant. Balancing physical needs against facilitation of treatment that might include a requirement for physical restraint and result in feelings of betrayal, loss of trust, fear and distress, can only be achieved by close cooperation of all those involved in someone’s care.

Does it work? In research terms, we are not able to say because there has been no responsible way of setting up a methodology that would pass muster. What we can say is that we have a growing catalogue of experiences using this procedure and are finding that, in addition to apparently meeting the requirements of government guidelines and proposed legislation, there is also a fulfilling sense of ‘best practice in action’ as service users are increasingly given opportunities to receive complex information in ways they can use and subsequently show just how much they have taken in. Some have surprised us, producing the required information one word at a time in response to the structured part of the interview or demonstrating important connections that their carers had not thought them capable of making. Most important though is the fact that the requirement to assume capacity and therefore provide information applies to everyone, however disabled or apparently uncommunicative. This means that more service users than ever before are being

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included in decision-making about things that happen to them and we are all learning about procedures ranging from cataracts to colonoscopies and much in between. As a result, the hospital admission care plans and discharge plans developed by the nursing team can be better informed and the whole service is more prepared to support individuals through their treatment. The central components of clear information giving and a non-leading interview have seemed onerous at times, especially when people are using Makaton or the Chameleon as their communication interface and a new vocabulary has to be provided through Speech and Language services. People need training and support to get this right, particularly the specialist interview techniques, but the rewards have come through seeing our clients respond positively to their full inclusion and in receiving requests for training from other staff groups.

Anything else? There are gaps in understanding among many clinicians and carers regarding capacity and consent and these need to be addressed, including the capacity pro forma through which medical personnel can define someone as lacking capacity by virtue of a series of criteria unrelated to the decision. When we have a substantial cohort of trained interviewers, we can begin to cascade the technique through the system so that consent at all levels, including the most mundane day-to-day choices, can be properly evaluated. While the principles of consent and choice are embedded in the system, appropriately skilled probing is not. We hope that our new guidelines will raise awareness and facilitate a comprehensive training programme aimed at support staff and advocacy groups alongside professionals and family carers. We also need to manage the final step – the point at which the treating clinician needs to hear the person’s decision and may not have the skills or the time to elicit this.

References Arscott, K., Dagnan, D., Kroese, B. S. (1998) ‘Consent to psychological research by people with an intellectual disability’. Journal of Applied Research in Intellectual Disabilities 11, 1, 77-83 Arscott, K., Dagnan, D., Kroese, B. S. (1999) ‘Assessing the ability of people with a learning disability to give informed consent to treatment’. Psychological Medicine 29, 1367-1375 Conboy-Hill, S.P. (2000) The Cognitive Interview – a multipurpose approach to interviewing people with learning disabilities. Paper presented to the 6th World Conference on Innovations in Psychiatry, Westminster Halls, London. Conboy-Hill, S.P. (2001) ‘The Cognitive Interview – a multi purpose approach to interviewing people with learning disabilities’. Clinical Psychology Forum 2 pp 17-20. Department of Health Guidelines on Consent. Department of Health 2001.

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Holland, A., Clare, I., and Gunn, M. (1999) ‘Defining and Assessing Capacity’. Paper presented to the Joint Conference of the Law Society, the Mental Health Commission and the Royal College of Psychiatrists on Mental Incapacity, London. The Lord Chancellor’s Department (1997) ‘Who Decides? Making decisions on behalf of mentally incapacitated people’. The Lord Chancellor’s Department (1999) ‘Making Decisions’. Milne, R. and Bull, R. (1999) ‘Investigative Interviewing’. John Wiley and Sons Ltd. Morris, C. D., Niederbuhl, J. M., and Mahr, J. M. (1993) ‘Determining the capability of individuals with mental retardation to give informed consent’. American Journal on Mental Retardation 98, 2, 263-272

Web Resources The Mental Capacity Bill (2004) can be downloaded from: http://www.publications.parliament.uk/pa/cm200304/cmbills/120/04120.i-vi.html Department of Health website for consent issues: http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/Consent/fs/en Department for Constitutional Affairs (2004) ‘Mental Capacity Bill – Summary’. Download from http://www.dca.gov.uk/menicap/bill-summary.htm Department for Constitutional Affairs: download documents including the Mental Capacity Bill, its summary, and recently added Draft Code of Practice. http://www.dca.gov.uk/menincap/legis.htm With thanks to Becky Milne who provided my original training in the Cognitive Interview and generously comments on anything I write about it. *Assessing consent to marriage. This is not covered by the Bill but in this instance, the woman concerned was thought to be vulnerable to coercion by her much more vocal partner so that adult protection may have been an issue. It was not; she was knowledgeable and insightful to an impressive degree. The Sexual Offences Act 2003 has brought consent to sexual relationships in line with capacity legislation by referring to ‘mental disorder’ as a reason to doubt capacity and rendering IQ per se irrelevant.