Understanding and implementing the Mental Capacity Act 2005 in people with learning disabilities
Intended for healthcare professionals
Evidence and practice    

Understanding and implementing the Mental Capacity Act 2005 in people with learning disabilities

Rosalyn King Ward manager, Priory Group, London, England

Why you should read this article:
  • To refresh your knowledge of the principles of the Mental Capacity Act 2005

  • To understand how to apply the Mental Capacity Act 2005 in people with learning disabilities

  • To familiarise yourself with the upcoming changes introduced by the Mental Capacity (Amendment) Act 2019

The Mental Capacity Act 2005, applicable to England and Wales only, was introduced to empower and protect people who are unable to make their own decisions. The act emphasises the importance of assuming a person has capacity to make decisions unless proven otherwise and recognises that people should be able to make seemingly unwise decisions. This article aims to provide an understanding of the Mental Capacity Act 2005, to support practitioners in undertaking and documenting capacity assessments. It presents a case study involving a young man with learning disabilities living in a care home under Deprivation of Liberty Safeguards (DoLS), in which an issue arose about his capacity to decline a healthcare procedure. It explains the process that was used to assess his capacity to make this decision, and what actions were subsequently taken. The article concludes by outlining the changes made by the Mental Capacity (Amendment) Act 2019, including the introduction of Liberty Protection Safeguards, which are due to replace DoLS in April 2022.

Learning Disability Practice. doi: 10.7748/ldp.2021.e2076

Peer review

This article has been subject to external double-blind peer review and has been checked for plagiarism using automated software

Correspondence

Rosalyn.King@Oxfordhealth.nhs.uk

Conflict of interest

None declared

King R (2021) Understanding and implementing the Mental Capacity Act 2005 in people with learning disabilities. Learning Disability Practice. doi: 10.7748/ldp.2021.e2076

Published online: 28 January 2021

The Mental Capacity Act 2005 aims to empower and protect people who are unable to make their own decisions. It provides the legal framework for acting and making decisions on behalf of individuals who lack the mental capacity to make particular decisions for themselves, and details how to ensure that these are in their best interests.

Everyone involved in the care, support and treatment of people aged over 16 years must comply with the act when making decisions or acting on behalf of someone who lacks the capacity to make specific decisions. The act is accompanied by the Mental Capacity Act 2005 Code of Practice (Department for Constitutional Affairs (DCA) 2007), which provides guidance for decisions made under the act, and is used alongside the Deprivation of Liberty Safeguards (DoLS) (Ministry of Justice and Department of Health 2008), which were an amendment to the act and which came into force in 2009. The Mental Capacity Act 2005 only applies to England and Wales; comparable legislation in Scotland is the Adults with Incapacity (Scotland) Act 2000, and in Northern Ireland is the Mental Capacity Act (Northern Ireland) 2016.

People may lack capacity because of various conditions, such as dementia, brain injuries, mental health conditions and severe learning disabilities (NHS 2018). More than one million people in England have learning disabilities, and some of them may lack the capacity to make certain decisions at times (HM Government 2014). However, it should not be assumed that a person lacks capacity based on their diagnosis. It has been identified that there is inconsistency in the application of the principles of the Mental Capacity Act 2005 in inpatient and community settings for people with learning disabilities (House of Lords Select Committee Report 2014). Therefore, it is important that nurses involved in the care of this population understand the principles and legal requirements of the act.

This article provides an overview of the Mental Capacity Act 2005, including its principles and how it can be used to assess capacity. It presents a case study of a young man with learning disabilities living in a care home, where an issue arose about his capacity to decline a healthcare procedure. The article also details the changes introduced by the Mental Capacity (Amendment) Act 2019, including the Liberty Protection Safeguards that are due to replace DoLS in April 2022.

Key points

  • Mental capacity refers to an individual’s ability to make decisions

  • Under the Mental Capacity Act 2005, it is assumed that people aged 16 years and over have full legal capacity to make decisions for themselves, unless it is established that they lack capacity

  • Deprivation of Liberty Safeguards (DoLS) is the legal procedure required when it is necessary to deprive a patient or resident of their liberty if they lack capacity to consent to their care and treatment to prevent harm

  • Health and social care professionals need to record accurately the decisions made about the assessment of mental capacity, and the determination of a person’s best interests

  • Liberty Protection Safeguards are due to replace DoLS in April 2022

Case law and the Mental Capacity Act 2005

The case of F v West Berkshire Health Authority [1989] 2 All ER 545 led to the introduction of the Mental Capacity Act 2005, raising issues about best interests decisions and restrictive practices. F was a 36-year-old woman with severe learning disabilities who had the general mental capacity of a child aged between four and five years and the verbal capacity of a child aged two years. She communicated little verbally but used various other methods to express her likes and interests. F lived as a voluntary inpatient in a mental health hospital and began a sexual relationship with a male patient there. The hospital staff and her mother were concerned that if F became pregnant she would be unable to cope with the effects of the pregnancy and giving birth because of her learning disability.

F’s mother sought a declaration from the court that it would be lawful for her daughter to be sterilised, even though she was unable to consent to the operation due to her mental age. As a general rule, the performance of a medical operation on a person without their consent is unlawful, constituting the crime of battery and the tort of trespass to the person, but the defence of necessity was used to provide justification for this action. In this case, the High Court held that the sterilisation was lawful because it was in F’s best interests.

The decision in this case was widely criticised and drew attention to the fact that the law in England had no procedure whereby any other person or a court can make a medical decision on behalf of an adult patient who does not have capacity to make that decision (Fovargue and Miola 2010). Therefore, the Law Commission reviewed the law in relation to mental incapacity and their recommendations were implemented in the Mental Capacity Act 2005.

Principles of the Mental Capacity Act 2005

Mental capacity refers to an individual’s ability to make decisions, ranging from a simple decision such as choosing what to have for breakfast, to one requiring more informed decision-making, for example writing a will (Dawson and Szmukler 2006).

The Mental Capacity Act 2005 is regarded as a visionary piece of legislation for its time (House of Lords Select Committee Report 2014) because it seeks to change how professionals interact with people who may lack capacity (HM Government 2014). For example, under the act, there is a presumption of capacity; that is, it is assumed that people aged 16 years and over have full legal capacity to make decisions for themselves, unless it is established that they lack capacity. This presumption of capacity is the first of five statutory principles that underpin the act and place the person at the centre of any decision-making (Marshall and Sprung 2016).

The second of these principles states that a person is not to be treated as unable to make a decision unless all practicable steps to assist them to do so have been taken without success. This means that healthcare staff must ensure that resources, such as interpreters and leaflets, are made accessible to the individual concerned, to ensure the decision is informed.

The third principle of the act is that a person must not be treated as unable to make a decision merely because they make an unwise decision. This means that healthcare staff must acknowledge that an unwise decision may nevertheless be an informed decision. However, there may be a need for further investigation if a person repeatedly makes unwise decisions that put them at significant risk of harm or exploitation (DCA 2007).

Principles four and five apply to people who have been assessed as lacking capacity, and they are relevant to any decisions made or actions taken on their behalf. Principle four specifies that: ‘an act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in their best interests’. When determining what might be in a person’s best interests, it is important to consider their past and present wishes, feelings, beliefs and values, and it may be useful to consult the person’s family members and friends to see if they have any information about this (Alghrani et al 2016). An independent mental capacity advocate (IMCA) may need to be instructed and consulted if a person who has been assessed as lacking capacity has no family or friends to support or represent them when certain important decisions are being made (DCA 2007). Examples of such decisions include those related to serious medical treatment and changes of accommodation.

Principle four is linked closely to principle five, which involves considering any alternatives that would be less restrictive of the person’s rights and freedom of action, therefore aiming to protect them from unnecessary restrictions. This means that restrictive practices – for example where an individual is prevented from leaving the premises and requires constant monitoring – can be implemented and removed one at a time, or altogether, to ensure the best interests of the person are upheld and that the least restrictive practices are being used.

Incapacity and Deprivation of Liberty Safeguards

Principles four and five of the Mental Capacity Act 2005 must be applied each time a decision or action is taken on behalf of a person who lacks capacity to make a specific decision. Where the two principles impose constant restriction and control over a person’s liberty in a hospital or care home setting, authorisation for the decision is required from the local authority. DoLS is the legal procedure required when it is necessary to deprive a patient or resident of their liberty if they lack capacity to consent to their care and treatment to prevent harm (Social Care Institute for Excellence (SCIE) 2020). At present, DoLS only apply to those aged 18 and older.

There is an ‘acid test’ for what constitutes a deprivation of liberty which states that an individual in a care home or hospital setting who lacks the capacity to consent to the arrangements for their care is deprived of their liberty and should be the subject of a DoLS application if:

  • They are subject to continuous supervision and control.

  • They are not free to leave the care setting (SCIE 2017).

The following six assessment criteria must be satisfied for the DoLS to be approved (Ministry of Justice and Department of Health 2008):

  • Age assessment.

  • Mental health assessment.

  • Eligibility assessment.

  • No refusals assessment.

  • Best interests assessment.

  • Mental capacity assessment.

If all these assessments support authorisation, the best interests assessor recommends a period for which the deprivation of liberty should be authorised (up to a maximum of 12 months) and a person to be appointed as representative.

In some cases, the Court of Protection may need to approve restrictive practices, for example in relation to complex property or medical issues. While it is beyond the scope of this article to explore the associated ethical dilemmas, readers can examine various examples in case law, such as AJ v A Local Authority [2015] EWCOP 5.

Capacity assessment

Capacity is a cognitive ability such as comprehension and problem-solving (Appelbaum and Grisso 1988). It can be affected by physical or mental illness, or disability and is regarded as a continuum (Karlawish 2008). It is important to note that, in some people, for example those with dementia or mental health conditions such as bipolar disorder, the capacity to make decisions can fluctuate. This can mean that they may have the capacity to make a decision at one time of the day but not at another, so their capacity is time-specific (Mental Capacity Act 2005, DCA 2007). Furthermore, the DCA (2007) emphasises that a person’s capacity must not be judged simply because of their age, appearance, condition or an aspect of their behaviour.

A capacity assessment can be undertaken by anyone caring for or supporting a person who may lack capacity, for example a care worker or a nurse. The assessor is not required to be an expert in assessing capacity. Under the Mental Capacity Act 2005, assessing someone’s capacity to make a decision for themselves involves a two-stage test of capacity (DCA 2007):

  • Stage one (diagnostic test) – does the person have an impairment of the mind or brain, or is there some sort of disturbance affecting the way their mind or brain works? This impairment or disturbance may be temporary or permanent.

  • Stage two (functional test) – if so, does that impairment or disturbance mean that the person is unable to make the decision in question at the time it needs to be made?

The functional test determines how the person’s impairment or disturbance has affected the decision in question. This involves asking four questions:

  • Does the person understand the information relevant to the decision?

  • Can the person retain that information in their mind?

  • Can the person use or weigh that information as part of the decision-making process?

  • Can the person communicate their decision (by talking, using sign language or any other means)?

A person is considered unable to make a decision if it is determined that the answer to one or more of any of these questions is ‘no’. The person being assessed does not need to demonstrate full certainty across all answers; where there is doubt, the assessor must be able to show that it is more likely than not that the answer to these questions is ‘no’ (DCA 2007).

Documenting capacity assessments and decisions

Health and social care professionals need to record accurately the decisions made about the assessment of mental capacity, and the determination of a person’s best interests (Office of the Public Guardian 2009). The capacity assessment and its corresponding documentation should be proportionate to the complexity of the decision being made. National Institute for Health and Care Excellence (NICE) (2018) guidelines recommend using a less formalised approach for day-to-day decisions, for example personal care interventions, but formal best interests meetings for significant decisions, for example changing the person’s medicines. This may be as a standalone assessment document, contained within the individual’s health or social care record or in care and support plans, following local policy. The timescale for review of the assessment should also be recorded (NICE 2018).

Jayes et al (2020) undertook a literature review of the evidence describing how health and social care professionals in England and Wales assess mental capacity. They found that health and social care professionals often did not give details about how they provided information to service users and assessed their decision-making abilities, and they also reported inconsistencies in record-keeping. When documenting a capacity assessment, it is important to be clear about the specific decision and time that it relates to. Therefore, the entry: ‘the patient does not fully understand, retain, weigh and communicate, so they do not have full capacity’ is inadequate, because it suggests that the outcome of the capacity assessment applies to all the person’s decisions, rather than being decision-specific and time-specific.

Case study

Tom (a pseudonym) is an 18-year-old man with Prader-Willi syndrome (a genetic disorder characterised by an insatiable chronic appetite, weak muscles and intellectual impairment), mild communication difficulties and behaviour that challenges. He lives in a care home under DoLS. Due to his Prader-Willi syndrome and behaviour that challenges, restrictions have recently been put in place, including locked kitchen cupboards and supervision to the shops to curb his overeating. These restrictions can be lifted when they are no longer necessary and where there is a reduction in his behaviour that challenges.

Tom’s DoLS order does not cover all the medicines he requires to manage his physical health conditions. Some of these medicines are associated with a risk of hypertension, so Tom requires regular blood pressure monitoring twice daily.

At the time of his midday blood pressure check, one of the nurses asks: ‘Tom, is it okay to take your blood pressure now?’ Tom usually nods his head and replies ‘yes’ to such prompts, but on this occasion he ignored the nurse and a second prompt was met by a blank stare. The nurse noted that concerns were raised during the morning handover that Tom had demonstrated significant behaviours that challenge during the night, such as being verbally aggressive towards staff and slamming doors, and that these behaviours had also been evident during the morning. Staff were aware that changes to Tom’s routine and meal planning activities had recently been made in accordance with his DoLS, and had noted that Tom had appeared low in mood since these restrictions were introduced.

The nurse assessed Tom’s capacity to consent to the blood pressure check and decided that, on the balance of probability, he had the capacity to decline this healthcare procedure at that time, although his decision could be considered unwise. The nurse and Tom agreed that she would ask to take his blood pressure again later. The capacity assessment and decision-making process was as follows.

The decision

Tom has declined his midday blood pressure check.

Reason for the capacity assessment

There is a concern that Tom’s refusal to consent to his blood pressure check may be associated with recent changes in his mood and behaviour that challenges, and that this is affecting his decision-making ability.

Support to assist in making the decision

Tom was provided with pictograms showing the reasons for the blood pressure checks and what the procedure involves. The nurse asked if they could go through these pictograms and Tom nodded. Tom asked to look at the calendar in his care plan showing how many days he has had the checks for.

Stage one – diagnostic test of capacity

  • Does the person have an impairment of, or disturbance in, the functioning of the mind or brain?

Yes – Tom has Prader-Willi syndrome, mild communication difficulties and behaviour that challenges.

Stage two – functional test of capacity

  • Does the person understand the information relevant to the decision?

Yes. Various methods were used to support his understanding, including verbal prompting, pictograms and a discussion with the nurse. Tom informed the nurse verbally that he did not like the blood pressure cuff. The nurse asked if there was anything they or the team could do and Tom said ‘no’. The nurse asked if she could take his blood pressure now or at a later time. Tom responded ‘later’ while looking away.

  • Can the person retain that information in their mind?

Yes. Tom gave a consistent response when asked in different ways.

Can the person use or weigh that information as part of the decision-making process?

Yes. Various methods were used to assist Tom with making the decision, and he confirmed he did not want any further assistance. Tom gestured by nodding his head and said ‘later’ to another attempt.

Can the person communicate their decision?

Yes, verbally and through gestures.

The following case study details the capacity assessment and decision-making process for a young man with learning disabilities.

Case study discussion

The management of a person’s physical and mental health needs through healthcare procedures such as taking blood pressure or blood tests, providing wound care and administering medicines, requires patient consent. Consent is required from the person before undertaking any healthcare procedure; however, by definition, a person who lacks capacity to consent cannot consent to treatment or care and support (NICE 2018).

The case study demonstrates that Tom’s capacity is decision-specific, since he can make decisions about some aspects of his care, such as whether he consents to undergo physical health checks, and not others, such as how much food he wants to eat. However, if Tom continues to refuse the blood pressure checks, the multidisciplinary team may review his capacity in a best interests meeting to consider the necessary and proportionate risks of undertaking the healthcare procedure. This meeting may be necessary because, although his initial refusal was considered an unwise decision that he had the capacity to make, continuing to refuse the blood pressure checks would put him at significant risk of harm, since untreated hypertension can ultimately result in death or severe disability.

Tom’s GP would continue to act as the lead clinician in having overall responsibility for monitoring Tom’s blood pressure and treating any hypertension. The meeting may decide it is not in Tom’s best interests for him to be restrained for the purpose of undertaking blood pressure checks since this would affect the readings and cause him disproportionate distress, so prescribing antihypertensive medicines may be considered as a short-term treatment. Tom’s GP would then act again as the lead clinician in an additional meeting to decide if this would be in Tom’s best interests. If Tom refuses to take these medicines and their benefit overrides his decision, a best interests review would be attended by his family and a representative from the local authority. This would require a specific condition (care plan) to be agreed and attached to the DoLS authorisation. The decisions and best interests meetings and reviews would be documented using a standalone assessment form, in accordance with local policy.

Mental Capacity (Amendment) Act 2019 and Liberty Protection Safeguards

The Mental Capacity (Amendment) Act 2019 introduces a new system for authorising deprivations of liberty in care, known as Liberty Protection Safeguards, which are due to replace DoLS in England and Wales from April 2022 (UK Parliament 2020). DoLS were widely criticised for being overly complex and bureaucratic, and a large backlog of DoLS applications had built up, meaning that many cases were left unassessed (Law Commission 2017). Therefore, it was decided that a simpler system is required that still protects people’s rights when their care is restrictive.

One change that will be introduced is that deprivations of liberty will be able to be authorised for anyone aged 16 years or over, which is in line with other parts of the Mental Capacity Act 2005. Furthermore, Liberty Protection Safeguards will apply to a broader range of settings than DoLS, including care homes, nursing homes, hospitals, supported living, people’s own homes, day services and sheltered housing. Deprivations of liberty will have to be authorised in advance by the ‘responsible body’, which could be the local authority, hospital manager, clinical commissioning group or local health board (SCIE 2020). There will also be three assessment criteria that must be satisfied rather than six: a capacity assessment; a medical assessment; and a necessary and proportionate assessment.

Conclusion

Many people with learning disabilities will be assessed as lacking the capacity to make certain decisions, so it is important that nurses caring for these people understand the principles and legal requirements of the Mental Capacity Act 2005. The main purpose of the act is to place the individual concerned at the centre of decision-making, whether: they are presumed to have capacity; they are making an ‘unwise’ decision; doubts have arisen about their capacity; or they have been assessed as lacking the capacity to make a particular decision. Nurses should ensure that they are familiar with the procedures for undertaking capacity assessments, DoLS or Liberty Protection Safeguards applications and best interests decisions, to ensure that they protect the legal rights of people with learning disabilities.

References

  1. AJ v A Local Authority [2015] EWCOP 5.
  2. Appelbaum PS, Grisso T (1988) Assessing patients’ capacities to consent to treatment. New England Journal of Medicine. 319, 25, 1635-1638. doi: 10.1056/NEJM198812223192504
  3. Alghrani A, Case P, Fanning J (2016) Editorial: The Mental Capacity Act 2005 – ten years on. Medical Law Review. 24, 3, 311-317. doi: 10.1093/medlaw/fww032
  4. Dawson J, Szmukler G (2006) Fusion of mental health and incapacity legislation. British Journal of Psychiatry. 188, 504-509. doi: 10.1192/bjp.188.6.504
  5. Department for Constitutional Affairs (2007) Mental Capacity Act 2005: Code of Practice. The Stationery Office, London.
  6. F v West Berkshire Health Authority [1989] 2 All ER 545.
  7. Fovargue S, Miola J (2010) The best interests principle and providing treatment for adults without capacity in England and Wales. Clinical Ethics. 5, 4, 180-183. doi: 10.1258/ce.2010.010038
  8. HM Government (2014) Valuing Every Voice, Respecting Every Right: Making the Case for the Mental Capacity Act. http://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/318730/cm8884-valuing-every-voice.pdf (Last accessed: 22 December 2020.)
  9. House of Lords Select Committee Report (2014) Select Committee on the Mental Capacity Act 2005 - Report. Mental Capacity Act 2005: Post Legislative Scrutiny. http://publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/13902.htm (Last accessed: 22 December 2020.)
  10. Jayes M, Palmer R, Enderby P et al (2020) How do health and social care professionals in England and Wales assess mental capacity? A literature review. Disability and Rehabilitation. 42, 19, 2797-2808. doi: 10.1080/09638288.2019.1572793
  11. Karlawish J (2008) Measuring decision-making capacity in cognitively impaired individuals. Neurosignals. 16, 1, 91-98. doi: 10.1159/000109763
  12. Law Commission (2017) Mental Capacity and Deprivation of Liberty. The Stationery Office, London.
  13. Marshall H, Sprung S (2016) The Mental Capacity Act: a review of the current literature. British Journal of Community Nursing. 21, 8, 406-410. doi: 10.12968/bjcn.2016.21.8.406
  14. Ministry of Justice, Department of Health (2008) Deprivation of Liberty Safeguards: Code of Practice to Supplement the Main Mental Capacity Act 2005 Code of Practice. The Stationery Office, London.
  15. National Institute for Health and Care Excellence (2018) Decision-Making and Mental Capacity. NICE guideline No. 108. NICE, London.
  16. Office of the Public Guardian (2009) Making Decisions: A Guide for People who Work in Health and Social Care. http://ouh.nhs.uk/patient-guide/safeguarding/documents/health-workers-guide.pdf (Last accessed: 22 December 2020.)
  17. Social Care Institute for Excellence (2017) Deprivation of Liberty Safeguards: Putting Them Into Practice. http://www.scie.org.uk/files/mca/dols/practice/putting-dols-into-practice.pdf?res=true (Last accessed: 22 December 2020.)
  18. Social Care Institute for Excellence (2020) Deprivation of Liberty Safeguards (DoLS). http://www.scie.org.uk/mca/dols/practice/lps (Last accessed: 22 December 2020.)
  19. UK Parliament (2020) Implementation of Liberty Protection Safeguards: Statement Made on 16 July 2020. http://questions-statements.parliament.uk/written-statements/detail/2020-07-16/HCWS377 (Last accessed: 22 December 2020.)

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