A number of factors have been suggested to explain the poorer health status of people with intellectual disabilities, including ignorance of health needs associated with particular disabilities, and the inadequate provision of social and professional support mechanisms for people with intellectual disabilities and their families.

Kirsty Keywood and Margaret Flynn (UK)

The health needs of people with intellectual disabilities have long been the subject of professional, ethical and legal concern. People with intellectual disabilities have greater health needs, yet their opportunities to access healthcare are much reduced compared with men and women who do not have intellectual disabilities. A number of factors have been suggested to explain the poorer health status of people with intellectual disabilities, including ignorance of health needs associated with particular disabilities, and the inadequate provision of social and professional support mechanisms for people with intellectual disabilities and their families. Furthermore, the poor health status of people with intellectual disabilities is rooted in personal history and structural, environmental and politico-economic factors (World Health Organization, 2001). Against this background are concerns expressed by health and social care professionals about the legal implications of providing healthcare to a person who may be legally incapable of giving valid consent to treatment. The consequence of professionals' uncertainties over their legal responsibilities in such circumstances can lead to the long-term estrangement of people with intellectual disabilities from healthcare services.

Involvement in decision-making
In 1998, the authors sought to examine the extent to which adults with intellectual disabilities were involved in decisions about their healthcare through a small qualitative study involving adults with intellectual disabilities, their parents and carers (see Best Practice?; Keywood et al., 1999). The study found that many adults with intellectual disabilities were not involved in decisions about their own healthcare and that they were frequently denied access to important healthcare services.
Since the publication of Best Practice?( Keywood et al., 1999), there have been three significant policy initiatives aimed at improving the health and well-being of people with intellectual disabilities. The first of these, the Government's White Paper Valuing People (Department of Health, 2001a; see also Greig, 2003), had a number of aims (Figure 1).

FIGURE 1: Aims of Valuing People (2001)
  • To address the invisibility of people with intellectual disabilities in the NHS
  • To endorse their right to access equitable mainstream healthcare
  • To improve the ability of the NHS to serve this population

Guidance on consent to treatment
The White Paper highlights the importance of consent to treatment, especially in general hospitals where staff may have had minimal exposure to patients with intellectual disabilities and thus little experience on which to draw. To that end, the Department of Health published guidance on consent to treatment for patients, family members and healthcare professionals (Department of Health, 2001b), with dedicated guidance on obtaining consent from adults with intellectual disabilities (Department of Health, 2001c) The Lord Chancellor's Department's complementary proposals to reform the law relating to those unable to give legally effective consent were published in 1999 (Lord Chancellor's Department, 1999) and have resulted in the publication of a draft Mental Incapacity Bill in June 2003 by the newly established Department for Constitutional Affairs. Pending the enactment of the Mental Incapacity Bill, the Lord Chancellor's Department devised usable guidance for health, social and legal personnel on how to support adults who are unable to make their own decisions, which should do much to improve underdeveloped custom and practice (Lord Chancellor's Department, 2003a-f).
Drawing on some of the data obtained in the course of the Best Practice? study, this paper presents a range of issues relating to professional and multidisciplinary concerns about the ability of adults with intellectual disabilities to make their own decisions. It also considers how these concerns can be addressed in the light of recent legal, policy and professional developments.

Giving consent - who can decide?
At the time Best Practice? was written, there was a perception in many areas of social and medical practice that adults with intellectual disabilities were unable to give legally effective consent to any treatment. Most interviewees with intellectual disabilities spoke of their healthcare decisions being taken by relatives and paid carers. This practice of 'proxy' decision-making was most prevalent in the context of decisions concerning women's reproductive health; the study found that negative attitudes towards the sexuality of people with intellectual disabilities had an impact on women's access to sexual health screening services (see also Aunos and Feldman, 2002; NHS Cancer Screening Programme, 2000). Proxy decision-making occurred more frequently with those who lived in group residential services, thus supporting the contention that choice and self-determination are hindered by institutionalized living environments (Wehmeyer and Bolding, 2001, or with family members.

Capacity to consent
The perception that people with intellectual disabilities cannot consent for themselves correlates with the so-called 'status' approach to the question of capacity to consent, which presupposes that certain individuals, by virtue of their status, are necessarily incapable of making legally valid decisions about their care. On such an analysis, whole population groups (e.g. children, people with disabilities, sometimes women) could be denied the opportunity to make decisions without reference to individuals' cognitive functioning or communication skills. English law does not endorse such an approach, adopting instead a 'functional' approach to the question of capacity to consent - i.e. a person's ability to make a decision is determined in the context of a particular function or decision-making task. This means that a person may be competent to make some decisions but lack capacity to make others. In law, every adult is presumed to be capable of giving a legally effective consent to medical treatment. That presumption can, however, be rebutted if the person is unable to understand information relating to the healthcare proposed, including the likely effects of having or not having the treatment, or is unable to weigh up the information in order to arrive at a decision (see Re MB (1997), and Feldman, 2003). Thus, English law presupposes capacity to perform two distinct but related functions:

  • understanding information
  • using the information in order to reach a decision.

Assessing capacity
Since the publication of Best Practice? efforts have been made to eradicate any misplaced assumptions about the relevance of a status approach to mental incapacity. Government departments and professional bodies have made clear statements in their policy guidance to this effect. The Department of Health and the Lord Chancellor's Department have drafted useful guidance, indicating factors that might impede an effective assessment of capacity (e.g. staff attitudes to intellectual disability, length of time available for a consultation with the patient, failure to provide appropriate assistance to a person with communication difficulties) (Lord Chancellor's Department, 2003a-f).

Considerable work has been done to develop clinical tools to assess capacity to consent to various healthcare procedures. Such tools are important for professionals working with adults with intellectual disabilities, given that people with intellectual disabilities are more likely to be compromised in their capacity to consent than the general population (Wong et al., 2000). Of particular importance is the development by Grisso and Appelbaum (1998) of the MacArthur Competence Assessment Tool for Treatment (MacCATT-T) This is sensitive to the broader social and institutional context of the assessment of capacity, acknowledging that a finding of incapacity to consent to a particular healthcare intervention often has as much to do with external influences as with evidence of an individual's reasoning and understanding. The aim is to assess a person's ability to make a healthcare decision, while remaining aware that their capabilities may, at the time of assessment, be limited by external factors.

Decision-making by relatives and carers
The Department of Health guidance on obtaining consent (2001c) and the guidance and clinical tools for capacity assessments (2001b) will take some time to become established, or even be invoked. Best Practice? confirmed that relatives and paid care-givers are asked to sign consent to treatment forms on behalf of adults with intellectual disabilities, and that relatives regard the signing of these forms as part of their role. Thus, custom and practice, compounded by exaggerated legal concerns about acquiring the consent of patients with intellectual disabilities, are challenged by the guidance. However, relatives and paid care-givers may be inadvertently encouraged in their erroneous belief that they can and should consent to the treatment of adults with intellectual disabilities by the new requirement in the guidance for clinicians to:

  • collaborate with them
  • explain what is likely to happen
  • seek their signatures as confirmation that they have been consulted.

The practice of proxy decision-making by the relatives and carers of people with intellectual disabilities is contentious and without foundation in law, especially in the domain of treatment refusal. Brown et al. (2002) highlight the contestable assumption that relatives will determine what is in their loved ones' best interests. While this is not unique to the terminal illnesses of people with intellectual disabilities (see Randall and Downie, 1999), irresolvable conflicts of interest may arise as end-of-life healthcare decisions are considered. The dissemination of such studies is important in highlighting persistent poor practice that is contrary to law and guidance.

FIGURE 2: Limits on capacity to consent
Professionals should be aware that a person's capacity to consent may be limited by external factors in order to:
  • Support and facilitate the patient's understanding and appreciation of relevant information
  • Energize the process
  • More credibly convey the certainty that the patient is able to make their own decision

Overcoming negative attitudes
A further obstacle to people's effective involvement in decisions about their care arises from the negative attitudes of some health and social care professionals towards people with intellectual disabilities (Aunos and Feldman, 2002). The Best Practice? study found that attitudinal barriers obstruct access to primary care, and recent events indicate that they also impede access to secondary care services. The Royal Brompton and Harefield Hospital Inquiry (Department of Health 2001d), for example, considered the tremendous disparity in access to paediatric cardiology that the parents of children with Down's syndrome believed was prevalent in the 1980s. The Inquiry conceded that these infants and children were disadvantaged, not in terms of clinical outcomes, but in their families' exposure to the less-than-favourable attitudes of clinicians. For example, when considering the best interests of the children, clinicians asked 'red-herring' questions such as: 'What are the merits of undertaking heart surgery given that these children may develop Alzheimer's disease prematurely?'
Such attitudinal barriers raise questions about the legal responsibility of health and social care services under the Disability Discrimination Act 1995 and the Human Rights Act 1998. Both pieces of legislation prohibit the unjustified discrimination of individuals on grounds of disability and provide legal mechanisms to challenge such practices.

Creating time
The drive to reduce long waiting lists for treatment, avoid 'trolley waits', tackle delays in hospital discharge and improve patient flow emphasizes the importance of time, and, specifically, speeding up health 'throughput' in the NHS. However, the health needs of people with intellectual disabilities present challenges that require care providers and policy-makers to work against the flow of many such NHS initiatives. Best Practice? and the jointly issued guidance from the Department of Health and the Lord Chancellor's Department confirm the importance of creating time and being generous with time so that the decision-making of people with intellectual disabilities is facilitated and supported, and their consent to treatment is achieved by a reflective and informed process.

FIGURE 3: Recommendations from the Brompton and Harefield Hospital Inquiries
  • Parents should be put in touch with local parent groups
  • Children are entitled to treatment in their own right
  • Children's interests and clinical need must be paramount, and their Down's syndrome status must feature in their notes for monitoring purposes

Professional development of staff should include:
  • Training by the parents of children with Down's syndrome
  • An understanding of the rights of people with Down's syndrome
  • An introduction to the impact of discrimination

'Levers' to changing practice
It is hoped that the following 'levers' will advance the healthcare decision-making of adults with intellectual disabilities.

  • A lever to changing practice is found in the National Service Framework (NSF) Collaboratives. These provide a crucial way of examining patients' experience of and progress through the NHS. The NSFs underline the importance of accessing, gathering and using reliable information to enhance healthcare decision-making. The Collaboratives enable the problem-solving skills of front-line staff and service improvement managers to be brought to bear on the lessons that arise from mapping the patient's 'journey' through the NHS. Exposing the disadvantages that people with intellectual difficulties experience in secondary care means that issues of consent to treatment and communication are more likely to be recognized.
  • Patient Advice and Liaison Services (PALS) were established in every NHS Trust in 2002 to enhance problem-solving and the offering of information to patients and carers. PALS have a brief to address concerns and the power to negotiate immediate solutions. Valuing People heralds the PALS as having 'an especially important role for ensuring that people with intellectual disabilities can access the full range of NHS provision' (Department of Health, 2001a).

REFERENCES AND FURTHER READING
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BMA and Law Society. Assessment of Mental Capacity: Guidance for Doctors and Lawyers. London: BMA, 1995.

Brown H, Burns S, Flynn M. Supporting people through terminal illness and death. In: Foundation for People with Learning Disabilities. Today and Tomorrow: The Report of the Growing Older with Learning Disabilities Programme. London: Mental Health Foundation, 2002.

Department of Health. Valuing People: A New Strategy for Learning Disability for the 21st Century. London: The Stationery Office, 2001a.

Department of Health. Good Practice in Consent Implementation Guide: Consent to Treatment or Examination. London: The Stationery Office, 2001b.

Department of Health. Seeking Consent: Working with People with Learning Disabilities. London: The Stationery Office, 2001c.

Department of Health. The Report of the Independent Inquiries into Paediatric Cardiac Services at the Royal Brompton Hospital and Harefield Hospital. London: Royal Brompton and Harefield NHS Trust, 2001d.

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First published in Psychiatry; Volume 2:8 August 2003 and reprinted with the kind permission of The Medicine Publishing Company.