Consent and Learning Disability - Essay Example

Consent and Learning Disability Introduction The ethics behind seeking consent of a patient stems from the ethic of patient autonomy and involves the informed free choice of the patient in type of interventions and management with regard to the patient’s own health care. Patients are limited in their expression of their autonomy unless they are provided with the requisite information. Thus a key component in the expression of their choice in health care as a part of their autonomy is being well informed. The second key component is in the understanding of the information that has been provided (Kukla, 2007). People with learning disabilities may have difficulty with the second key component. Yet as part of their autonomy requirements consent cannot be denied to them and it is essential that there is an understanding of the manner in which their autonomy can be enhanced and not compromised. With more and more people with learning disabilities in the United Kingdom seeking generic health care services, as a result of the policies of the health care authorities, consent with regard to people with learning difficulties becomes a significant issue for professionals involved with providing health care services to people with learning difficulties (Brittle, 2004). Defining People with Learning Difficulties In the United Kingdom nearly one-and-half million people are estimated to be affected by learning disabilities. Two factors need to be considered when addressing people with learning difficulties. The first is that learning difficulty remains with these individuals throughout the course of their life and the second is that these individuals have their own likes and dislikes, history and opinions and possess the same rights like any other citizen of the United Kingdom. The Royal College of Nursing Learning Disability Nursing Forum, 2006, relates learning difficulties to those individuals, who demonstrate the characteristics of “a significant impairment of intelligence, a significant impairment of adaptive function and age of onset before adulthood” (The Royal College of Nursing Learning Disability Nursing Forum, 2006). There are no laboratory tests or imaging tests that form the basis of identifying individuals with learning tests. The measure of intelligence based on cognitive assessment, whereby the intelligence quotient (IQ) score is ascertained, is the means to identifying people with learning difficulties. Such IQ tests evaluate the abilities of an individual in areas such as comprehension, expression, knowledge, abstract thinking, memory and problem-solving skills. These tests are normally administered by psychology professionals in the form of the clinical psychologist. The score of 100 plus or minus fifteen in the IQ test is considered to show average intelligence. This means that any score below 85 is indicative of learning difficulty and the level is based on the IQ test score. An IQ test score of between 55 and 69 is considered to reflect significant impairment in intellectual functioning, while a score below 55 is considered to reflect severe impairment in intellectual functioning. The terms of mild, moderate, severe or profound learning disabilities are also used in describing learning disabilities. However, the terms moderate, severe or profound learning disabilities are terms that indicate severe impairment in intellectual functioning. Such a defining of learning disabilities has resulted in the earlier categorizing of people with learning difficulties in terms of mental ages, which was demeaning and lacked respect for the experience of the individual (The Royal College of Nursing Learning Disability Nursing Forum, 2006). Not all individuals with learning disabilities go through an IQ test. The IQ test is usually employed when there is uncertainty on learning disability in an individual and such information is essential for taking a decision on whether the individual is eligible to avail of specialist learning disability services (The Royal College of Nursing Learning Disability Nursing Forum, 2006). This then can calls for the health care professional recognizing learning disability in an individual seeking health care services and responding at an appropriate level. This recognition is easy, when the learning difficulty is pronounced and clearly demonstrated. In the case of mild learning difficulty higher recognition skills are required. Nursing professionals within the health care services closely interact with all kinds of people in their health care needs. There are a number of points recommended for use to help them ascertain learning disability in their patients, though it is not a panacea for removing the learning disability recognition problem in total. These points include ascertaining from the individual whether the person has learning difficulties; whether the person has a social worker, care manager or key worker; whether the individual attended any special school or a school with special support; whether the individual attends a day care centre; whether the individual has had the service of any learning disability professional or was admitted into a learning disability institution; whether the individual can read and write; whether the individual can identify the time; whether the individual suffers from any communication difficulties and whether the individual can recall common things like where they reside or birthday These steps help nursing professional identify people with learning difficulties, so that they can ensure that the policies and guidelines for seeking their consent in the health care needs are complied with (The Royal College of Nursing Learning Disability Nursing Forum, 2006). Current Department of Health Policies and Guidelines The four countries of England, Scotland, Wales and Northern Ireland that make up the United Kingdom have their individual policies on addressing the health care needs of people with learning difficulties and their consent. For England the policy document is the Department of Health, 2001, Valuing people a new strategy for learning disability in the 21st century, London, HMSO; for Scotland it is the Scottish Executive, 2000, The Same as You: A review of services for people with learning disability, Edinburgh, Scottish Executive; for Wales it the Learning Disability Advisory Group, 2001, Fulfilling the Promises: Report of the Learning Ability Advisory Group, Cardiff, National Assembly for Wales and for Northern Ireland it is the Department of Health and Social Security, 2005, Equal Lives: Review for People with Learning Disability in Northern Ireland, Belfast, DHSSPS (The Royal College of Nursing Learning Disability Nursing Forum, 2006). Traditionally it was viewed that people with learning disabilities lacked the capacity to make decisions on their own. Such thinking has now been revised to recognize that people with learning difficulties have the capacity to make their own decisions and the laws with regard to consent in the United Kingdom reflect recognition of the rights of people with learning difficulties to make their own informed decisions with regard to their health care needs. There are two separate laws in the United Kingdom that govern the capacity to give consent. These are the Mental Capacity Act (DH, 2005) in England and Wales, and the Adults with Incapacity Act (Scottish Executive, 2000) in Scotland. No statute on consent governs Northern Ireland and instead common law or case law, based on precedents set by precious court cases is the current guidance. These different laws and case law may differ in their wordings, but in essence they exert the same principles on consent in the case of examination and treatment in the providing of health care services, which determine the expectations on health care service staff (The Royal College of Nursing Learning Disability Nursing Forum, 2006). Irrespective of whether the consent is sought in writing or verbally, there are three governing principles involved in the governing the consent process, which according to the Department of Health, Social Services & Public Safety, 2003, are that the individual should be “capable of taking that particular decision (‘competent’), acting voluntarily (not under undue pressure from anyone) and provided with enough information to enable to make the decision”. People with learning disabilities competent of taking decisions on their health care examination and treatment needs have the right to be involved in the decision making process, which means that their consent is essential for any examination or treatment procedure. Legally there is no difference if the consent is in writing or taken orally or even non-verbally. However, in the interest of good practice written consent should be sought when the examination or treatment procedure is complex or involves an element of significant risk or side effects. Should the patient give oral or verbal consent for such procedures, but is unable to physically sign the concerned consent form, then such a noting should be made in the consent form (Department of Health, 2001). Consent once received is not permanent and the patient can withdraw consent at any given time. In general, when consent is withdrawn, the best practice is to discontinue the procedure. During a procedure should consent be withdrawn, the withdrawal may be a reflection of the pain or distress experienced in the procedure, rather than true withdrawal of consent. It may be relevant in such cases for reassurances to be given to the patient, so that the procedure may be continued. In the event the stopping of the procedure is likely to pose a risk to the life of the patient, the procedure can be continued till such time the risk factor exists and discontinued only after that, even when the individual withdraws consent for the procedure (Department of Health, 2001). It is only in the case of treatment of mental disorders that the right of the individual for consent can be wholly negated and falls under mental health legislation. Even in the case of detention on mental health grounds, there is no power to treat other causes without receiving consent from the individual (Department of Health, 2001). Capacity for consent is the first governing principle. Just as in the world of justice everyone is innocent unless proven otherwise, so too in the matter of consent, where everyone is to be considered capable of taking health and social care decisions unless proven otherwise. Thus people with learning abilities are to be considered as having the capacity for consent, unless the opposite is demonstrated. Should doubts arise on the capacity of an individual with learning ability, then appropriate action should be taken to assess the capacity of the individual, which needs to involve the carers of the individual and specialist colleagues like learning disability teams, speech and language therapists. The assessment and conclusions drawn from this exercise must be noted down in the personal notes or appropriately in a form for adults who are unable to consent (Department of Health, Social Services & Public Safety, 2003). The Department of Health, Social Services & Public Safety, 2003 give the conditions by which people have the capacity to take decisions as the ability to “comprehend and retain information material to the decision, especially as to the consequences of having or not having the intervention in question, and use and weigh this information in the decision-making process”. The assessment of capacity of the individual has to be as objective as possible and not influenced by factors of the environment of the institution, personal factors of workload and time and the attitude of the individual making the assessment. Quite frequently people with learning disabilities are supported by family members, carers and friends, or even by advocates and their support may be useful in helping people with learning disabilities to understand the issues involved and take their own decisions. Local learning disability community teams can also be of assistance in enhancing the capacity of people with learning difficulties to make their own decisions. However, none of these supporting individual can consent on their behalf (Department of Health, Social Services & Public Safety, 2003). The capacity of an individual for consent needs to be assessed each time the consent is required and just because the capacity at one time was found to be deficient it does not mean that it remains deficient throughout the life of the individual. In the case of some individuals with learning difficulties they may be capable of making decisions on some interventions, but not for others. For example in the case of mild or moderate learning disability, these individuals may be capable of taking straightforward decisions on their care needs, but not when the decision involves complex information. The main guiding principle in seeking consent is to assist the individual with learning disability to make their decisions, which is both informed and their own decisions. Different individuals will arrive at different decisions and the process should not be converted into imposing the decision of the care-giver, by ruling the decisions of the individual as made without capacity, when it does not match the decision of the care giver. Should decisions may seem irrational, even then support of appropriate specialized staff should be sought and no attempt made to coerce people with learning abilities into giving consent (Department of Health, Social Services & Public Safety, 2003). Providing information is an integral component of seeking consent. According to the Department of Health, Social Services & Public Safety, 2003, information to be provided consists of “the benefits and risks of the proposed treatment or care, what the treatment or care will involve, what the implications of not having the care are, what alternatives may be available, what the practical effects on their lives of having, or not having, the treatment or care will be”. There are requisites in the manner that this information is provided the information has to be provided in the form that makes for comprehension of the individual. This has significant implication for individuals with learning difficulties in view of the possibility of lower cognitive abilities. The communication will have to be in simple short sentences and involve repetitions and the use of visual communicative aids, or an interpreter when there are language issues. Finally there is the need to ensure that individual has understood what was communicated, prior to seeking consent (Department of Health, Social Services & Public Safety, 2003). The voluntary nature of consent is the third governing principle and hence decision regarding their health by people with learning difficulties, must be their own, without any pressure from others and merely as agreement to comply with the authority of the health care provider (Department of Health, Social Services & Public Safety, 2003). People with severe learning disabilities may prove to be incapable of making their own decisions. It is still legal to provide care and treatment, provided the care and treatment is in the “best interests” of the individual. The guidelines on consent of individuals with learning disabilities do not permit anyone to give consent on behalf of the individual. From a legal perspective health and social carers are entitled to take health care decisions in such situations, however, in the interests of best practice it is ideal for such decisions to be arrived at through discussions between the health and social care professionals and the family members. Again from a legal perspective, “best interests” of an individual are not merely the interests from a medical point of view, but factors of their general well-being, relationships, spiritual and religious needs and their possible willingness to accept the decision need also to be taken into account, when “best interests” are considered. Though there is no legal support for the interests of the family to be taken into consideration in “best interests” of the individual, family relations are always part of the “best interests” of the individual and so consultations with the family need to be considered before arriving at the “best interest” decision. In such situations it is not the usual consent form that is used for recording the decision, but a written record either in the person’s notes or in the form for adults incapable of giving consent is made. This written record will contain the reasons for arriving at the decision and the involvement of any close family members if any. In case of any disagreement between the social care and health care professionals and the family members should also noted down (Department of Health, Social Services & Public Safety, 2003). Implications People with learning disability are being encouraged to participate more and more in their own health care decisions through the new policies and guidelines. Evidence from studies show that such a move is justified on the basis of the capacity of some people with learning disability. Arscott, Dagnan and Kroese, 1999, studying the capacity of people with learning ability to give consent in context of three vignettes of health care consisting of restraint, psychiatric and surgical intervention, have shown that 12.5% of people with learning disability are capable of giving consent on all these three vignettes, while 65% were capable of giving consent on any one of these three vignettes. This supports the perspective that people with learning disabilities need to be considered capable of making their own decisions and only when professional assessment demonstrates their incapacity should decisions be taken for them (Arscott, Dagnan & Kroese, 1999). However contrary to this evidence and the policy and guidelines on people with learning disabilities, evidence suggests that the attitude of the health care professionals is such that they not considered as a vital source of information in their treatment needs and quite often not communicated to with regard to treatment decisions and not involved in decisions about their health care and even not directly addressed for their consent. Thus there is the need to create a change in attitude among the health care staff on seeking consent of people with learning disabilities and also to increase awareness on the policy and guidelines for seeking consent from people with learning disabilities with regard to their health care treatment and care decisions (Sowney & Barr, 2007). Taking a cue from community learning disability nurses and the problems they face in consent from people with learning disabilities, it can be seen that health care staff require more support to address the difficulties that they face. This support is not merely from formal education, but opportunities through which they have discussions with their colleagues and health care and social care professionals. In addition they seek support for reflective practice, multidisciplinary working, clinical supervision, access to evidence base and training as the means to more effective and efficient seeking of consent from people with learning difficulties (Holloway, 2004). Literary References 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, vol.29, no.6, pp.1367-1375. Brittle, R. 2004, ‘Managing the needs of people who have a learning disability’, Nursing Times, vol.100, no.10, pp.28-29. Department of Health. 2001, ‘Seeking consent: Working with people with learning difficulties’, Department of Health Publications, London [Online] Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4007861 (Accessed on December 7, 2008). Department of Health, Social Services & Public Safety. 2003, ‘Seeking consent: Working with people with learning difficulties’, Health Promotion Team, Belfast [Online] Available at: http://www.dhsspsni.gov.uk/consent-guidepart4.pdf (Accessed on December 7, 2008). Holloway, D. 2004, ‘Ethical Dilemmas in Community Learning Disabilities Nursing’, Journal of Learning Disabilities, vol.8, no.3, pp.283-298. Kukla, R. 2007, ‘How Do Patients Know?’ The Hastings Center Report, vol.37, no.5, pp.27-35. Sowney, M. & Barr, O. 2007, ‘The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service’, Journal of clinical nursing, vol.16, no.9, pp.1678-1686. The Royal College of Nursing Learning Disability Nursing Forum. 2006, ‘Meeting the health needs of people with learning difficulties: Guidance for nursing staff’, Royal College of Nursing [Online] Available at: http://www.rcn.org.uk/__data/assets/pdf_file/0004/78691/003024.pdf (Accessed on December 7, 2008). Read More