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MCA: Care planning, liberty and autonomy

This section highlights the importance of liberty and autonomy within care and support planning, and the frequent tensions between liberty and risk-taking. It considers the evidence required to demonstrate that additional safeguards are in place when a person is either restrained or deprived of their liberty.

Liberty and care planning

Liberty is important – it is a human right. Liberty is what allows us to live fulfilling lives. We all have a right to live a life that is free from abuse or harm, but we also have the right to live our lives autonomously. The challenge for providers and commissioners is to manage the tension between, on the one hand, promoting people’s rights, and on the other, the duty to protect them from risk. Too much emphasis on rights can lead to a lack of safety. Conversely, a risk-adverse approach can impose unnecessary restrictions on people’s freedom.

The MCA supports a move from a model of protection and paternalism to one of enablement and empowerment. Respecting people’s rights to choose how they live their lives (as far as they are able) goes beyond the ‘duty of care’ (meaning that social care professionals must do what a reasonable person with their knowledge, skills and training can be expected to do). It represents a key principle of good care planning.

What to look for in the care and support plan and other records

  • How the person’s rights will be promoted – i.e. their rights to liberty, autonomy and family life.
  • The steps taken to maximise capacity.

The case of DE and the NHS

The recent case of DE provides a striking example of how valuing autonomy and liberty can transform people’s lives. [16]

Practice example: the case of DE and the NHS

This case is the first time that a court in England and Wales has made an order permitting the sterilisation of a man who was unable to consent to this, for non-therapeutic reasons. This case is summarised here not because of the sterilisation, but because of the reasoning that led to the decision.

DE was aged 37 and had learning disabilities. He lived with his parents who had worked hard to help him attain a degree of autonomy: travelling alone on the bus, attending a day centre alone, going for walks in the centre of town with a friend, participating in two swimming clubs and having a longstanding and close relationship with a girlfriend, with whom he had a sexual relationship. His girlfriend became pregnant and gave birth to a child.

This prompted a decision that DE lacked capacity to consent to a sexual relationship with his girlfriend, and from there a safeguarding intervention and protective measures to prevent it happening again. The protective measures included stopping DE and his girlfriend being alone together and preventing them visiting each other’s homes. The measures led eventually to the end of their relationship. They also led to DE being supervised at all times and eventually he lost confidence. The Court of Protection summed it up: ‘DE’s life was turned upside down’.

The impact of the protection plan on DE was summarised by the Court as experiencing:

  • the loss of engaging with the community without supervision/staff support
  • the loss of being able to walk through town from one venue to another with a friend
  • the loss of the ability to go alone to shops, make purchases and interact with traders and passers-by
  • the loss of the use of the local gym and facilities on the same terms as any other participant
  • the loss of privacy, the loss of a long-term relationship and the loss of liberty.

The order allowing the sterilisation was made because it would mean that he would be able to see his girlfriend and resume his sexual relationship with her, without the risk of another child that neither of them wanted being born.  DE and his girlfriend therefore began their relationship again, and DE regained much of his former liberty to engage with the community, alone or with friends.

Consent: who gives it and when?

The duty to obtain consent

Where people have capacity the care and support plan can only be delivered with their consent. Consent is critically important: it is the difference between care that is lawful and care that is not. To enable a person to give their informed consent they need to:

  • have been given all of the relevant information about their care, treatment or support
  • understand the different options available and the possible consequences of each
  • be free from any duress and understand that they have the right to refuse
  • be able to weigh up the options and use this information to make a decision and communicate this.

Consent may be communicated in a number of ways – for example, verbally, or by blinking, by squeezing a person’s hand. It may also be implied through actions – for example, a person holding their arms up so that they can be undressed, reaching out their hand to accept their medication or opening their mouth to accept food.

If a person with capacity to understand a proposed plan of care refuses to give their consent, their decision must be respected. Without consent, a care provider could be committing a civil offence such as trespass to the person or their property, or even a criminal offence such as assault. If there is reason to believe that a person may lack capacity to consent to their care and support plan, there should always be an assessment of their capacity and if necessary a best-interests decision. Where there is no evidence that a person lacks capacity, then even if what they want may put them at risk, our legal duty is to protect their right to autonomy.

Legal protection for care staff

The MCA gives protection from civil and criminal liability to staff who follow the five principles of the MCA (Sections 5.1 and 5.2) when providing care, treatment or support. However, protection from liability only applies where the person and their family/carer have been listened to and where risk-adverse practices are challenged.

What to look for in the care and support plan and other records

  • Evidence of the person’s consent to their care and support; or
  • Evidence of why the person lacked capacity to consent; or
  • Why the person refused to give consent.

Who can give consent to the care and support plan when a person lacks capacity to do so?

Health and social care professionals sometimes make the mistake of asking the next of kin or a relative to give consent to care and treatment when the person lacks capacity to do so for themselves. Families can never give consent to the care and treatment of a relative without statutory authority to do so.

It is important to distinguish between seeking the views of people who know the person well to inform care planning, and actual consent. Families may, and usually should, be consulted about the proposed care and support, and their views taken into account, but this is not the same as consent. They do not have automatic legal authority to provide permission for the proposed care or treatment. Only people who have a lasting power of attorney (LPA), or have been appointed by the Court of Protection as a deputy, have legal authority to give consent on behalf of a person who lacks capacity to do so. It should be noted that attorneys and deputies are also legally required to act in a person’s best interests and in line with the principles of the MCA. Their legal authority may be revoked if they fail to do this.

What to look for in the care and support plan

  • Information about who has legal authority to make decisions about the person on their behalf.

Lasting power of attorney

Creating a lasting power of attorney enables people over 18, who have capacity, to give authority to others to make decisions on their behalf. The lasting power of attorney must be on the prescribed form set out in the regulations, and must be registered with the Office of the Public Guardian (OPG) before it can be used.

Under the MCA, there are two types of attorney (refer to the Code, Chapter 7 for a full explanation):

  • property and affairs; and/or
  • personal welfare.

A person may give power of attorney to more than one named person for either property and affairs and/or personal welfare. An attorney for property and affairs may be registered to make decisions at any time, whereas a personal welfare attorney can only make decisions on behalf of a person when that person lacks capacity to do so. 

As part of care and support planning it is important to know whether the person using services has created a power of attorney. Care providers must record details of anyone who has power of attorney in the care and support plan, together with any attached conditions. It is a good idea for the manager to see a copy of the order so that they are clear about the scope of the attorney’s decision-making powers. For example, a personal welfare lasting power of attorney may state that: ‘My son, Mr Mariani, can make decisions about my welfare, but this does not include decisions about medical treatment or whom I may have contact with’.

If the person lacks capacity to make a specific decision and their attorney has been given authority to do so, the decision of the attorney will be as valid as if the person had made the decision themselves. This means that where a person lacks capacity and they have an attorney for personal welfare, the attorney must be involved in designing the care and support plan and must give their consent on behalf of the person.

Service providers have an important role in supporting people who have capacity to donate (give) a lasting power of attorney. This provides an opportunity to appoint a trusted person to make decisions on their behalf should they lack capacity to do so in the future.

What to look for in the care and support plan

  • Information about attorneys and the extent of their decision-making powers.
  • If a person lacks capacity to make decisions about their care and support plan or financial matters, evidence that registered personal welfare or financial affairs attorneys are involved.
  • People with capacity are supported to create a lasting power of attorney if they wish to.

Enduring power of attorney

Under the Enduring Powers of Attorney Act 1985 a person could appoint an enduring power of attorney (EPA) to handle their property and financial affairs, this could continue after that person lost capacity to make these decisions for themselves.  From 2007, the MCA replaced EPAs with the two forms of LPAs (personal welfare and property and affairs). Existing EPAs that are registered and valid can still be used. Details should be noted in the care and support plan.

What to look for in the care and support plan

  • Information about those holding enduring power of attorney and the extent of their decision-making powers.
  • If a person lacks capacity to make decisions about their property or financial affairs, that the attorney is involved if they have appointed one.

Court-appointed deputies

In some instances a person may have a court-appointed deputy to make decisions on their behalf (refer to the Code, Chapter 8 for a full explanation). This may occur where a person lacks capacity, does not have an attorney, and requires ongoing health and welfare decisions which the court considers require a deputy. Often the deputy may be a relative of the person.

What to look for in the care and support plan

  • Details of any court-appointed deputies and the extent of their decision-making powers.
  • Where appropriate how they have been involved in developing the care and support plan.

Advance decisions to refuse treatment

Advance decisions to refuse treatment (ADRTs) (refer to the Code, Chapter 9 for a full explanation) provide another way that a person can plan for a future time when they may lack capacity to make decisions. As part of the care and support planning process, care providers need to find out whether the person has made an advance decision to refuse any particular type of medical treatment. It is essential that this is recorded in the care and support plan. Information can then be shared with health professionals when necessary so that the person’s choices are respected. In most cases, a valid advance decision that is applicable to the situation cannot be overridden.

To maximise a person’s involvement in their medical treatment, they may need support to make an advance decision. It is especially important for a person who has fluctuating capacity to record their views about any clinical intervention while they have capacity to do so.

What to look for in the care and support plan and other records

  • Details of any advance decisions to refuse specific medical treatment and the circumstances in which these apply.
  • Evidence that the advance decisions have been regularly reviewed.

Statements of preferences and wishes

Care and support plans should include statements that the person may make regarding their preferences or wishes. These do not carry the same legal weight as an advance decision to refuse treatment, but they do provide critical information for decision-makers about what is important to the person. These statements must be taken into account when determining what is in the person’s best interests.

What to look for in the care and support plan and other records

  • Statements of preferences and wishes and how these have been taken into account when making best-interests decisions.
  • A detailed explanation of any incidents of a statement of wishes being over-ridden, with a clear justification of why that was thought to be in the person’s best interests,

Assessing capacity to consent

Capacity assessments are important

Capacity enables people to make their own decisions about their care and support. Assessing capacity in the right way at the right time is vital in care planning. Determining whether or not someone has capacity to make a decision has significant consequences. A person assessed as lacking capacity may be denied their rights. Conversely, a person who lacks capacity to make specific decisions could be put at significant risk if they are making decisions that they do not really understand.  Capacity assessments should not only take place because a person is resisting care and support. Evidence that a person may lack capacity to consent to their care and support should always lead to an assessment.

People’s capacity may change over time, and this needs to be taken into account when creating and reviewing a care plan. For example:

  • delaying a decision may provide an opportunity for a person to acquire new skills so that they can make their own decision (as in the case of DE above)
  • a person may have fluctuating capacity – for example, someone with dementia
  • a person may regain capacity – for example, someone recovering from a brain injury or an infection.

Who carries out a capacity assessment and how?

A capacity assessment can be thought of as a supported decision-making process. The assessor needs to build a rapport with the person so they can give them the support they need to make their own decisions about their care plan. 

The person responsible for carrying out the capacity assessment is usually the ‘person who is directly concerned with the individual at the time of the decision’ (the Code, Chapter 4.38). Depending on the type of decision, this could be the local authority or the care provider. It is often the case that capacity assessments are a collaborative process between the person, their family, the local authority, the provider and health care practitioners.

The local authority may carry out an assessment of a person’s capacity to consent to their care plan as part of a care and support needs assessment. The provider can use this to inform its own care planning about how care and support will be given on a day-to-day basis. The provider may also need to carry out its own capacity assessment to see if the person is able to understand and make decisions about particular aspects of how their care is given.

Capacity assessments for everyday care planning do not usually require a set of skills separate from those widely used in existing practice. However, there may be some cases where people have conditions or circumstances that make it particularly difficult to assess their capacity to make a decision. For example, some people with a brain injury may retain a lot of their previous abilities, but find it difficult to use and weigh information due to a strong tendency to make impulsive choices. In such cases, specialist expertise will be needed to carry out the assessment. Most times, however, the assessment of capacity forms part of routine support and decision-making. The key point is not to judge a person’s capacity to make decisions about their care and support solely on the basis of their age, appearance, behaviour or other condition (such as an illness, disability or intoxication). 

A person may have varying levels of capacity in relation to the different areas of their care and support. They may, for example, be able to make decisions about their personal care, but not about their medication. An assessment of capacity therefore needs to be made for each aspect of their care and support using the MCA framework. This uses a two-stage functional test for assessing capacity:

  • 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? 
  • 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?

It is not necessary to have a formal diagnosis of the condition causing the impairment, but there does need to be evidence. The person carrying out the assessment must have a reasonable belief that the person either has, or lacks, capacity. This means that they do not need to be 100 per cent certain, but must believe that it is more likely than not. If there is a disagreement about the outcome of the assessment, either with the person or their family, this should be discussed with the person and, where appropriate, their family. If no agreement can be reached, it may be necessary for the local authority to refer the matter to the Court of Protection.

The law says that, to have capacity to make a certain decision, a person must be able to carry out all of the following four steps:

  • understand the information relating to the decision
  • retain the information for long enough
  • use and weigh it to reach a decision        
  • communicate that decision, by any means that is understood.

If the assessment concludes that even with support the person lacks capacity, this should be recorded in the care and support plan. 

The care plan is likely to be drawn up by a senior manager in the care home or domiciliary care agency. The care worker needs to be familiar with each person’s care and support plan so that they can deliver care in the agreed manner. The care worker will also need to explain to the person what they are doing each time they provide care and support, and check that the person is comfortable with this. This will not necessarily be recorded in each care plan – however, staff should understand that this is how they should routinely give care and support.

What to look for in the care and support plan and other records

  • Either consent to each aspect of the care and support plan or an assessment of capacity stating that the person lacks capacity in relation to specific aspects of the care and support plan.
  • Evidence of an impairment or disturbance in the mind or brain and how this affects the person’s ability to make a decision about their care and support.
  • Diagnosis and prognosis where these are available.
  • A capacity assessment that follows the MCA framework and principles and provides evidence of whether the person is able to: –
    1. Understand the information relating to the decision – what decision they need to make, why they need to make it, the likely consequences of making, or not making, this decision
    2. Retain the information for long enough; not forever, or for a set period, just long enough to use
    3. Weigh the information in order to reach a decision. (Is there a need for a more thorough assessment perhaps involving a doctor or other professional expert?)
    4. Communicate that decision, by any means that is understood, such as sign language, use of a language board, hand gestures and/or facial expressions. (Would the services of a professional such as a speech and language therapist be helpful?)
  • The evidence in the capacity assessment fits with the conclusion.
  • The person has been given support, including specialist support where necessary, to help them make their own decision.
  • Where appropriate, the person’s family has been involved.
  • Evidence that the timing of the assessment took account of whether the person might have more capacity at another time.
  • If there was a disagreement over the assessment, what efforts were made to reach an agreement, whether the local authority was informed, and whether a referral was made to the Court of Protection if appropriate.

Demonstrating best-interests decision-making

When a person has been assessed as lacking capacity to make a decision, then that decision needs to be made in the person’s best interests. There are two exceptions to this: situations involving research and where there is a valid and applicable advance decision to refuse a particular medical treatment. For example, the person may have made an advance decision to refuse antibiotics in the event that they suffer from a chest infection.

Creating a care and support plan that is in a person’s best interests requires a collaborative approach with other significant people. Even though a person has been assessed as lacking capacity to decide about their care and support, they should still be involved in the best-interests decision-making process as much as possible. Any knowledge about their beliefs and values should be taken into account. The decision-maker needs to consider what the person might have wanted if they had been able to make the decision for themselves, and case law increasingly emphasises the importance of factoring in what is known about a person’s wishes. While the decision may not always be able to reflect what the person would have wanted, the impact of not carrying out their wishes may have serious consequences for their wellbeing and so must be carefully considered.

The Code provides a detailed checklist for deciding what would be in the person’s best interests (Chapter 5). A balance sheet approach to weighing up different options is helpful for more significant decisions – i.e. listing the certain or potential benefits and drawbacks of each option and the likelihood that these will occur.

What to look for in the care and support plan and other records

This list has been adapted from the Thirty Nine Essex Chambers checklists [17] for best interests assessments, care planning and transition planning, together with the MCA Code.

  • How any decisions made on behalf of a person who lacks capacity are made in their best interests.
  • A summary of the person’s care and support needs.
  • The person’s wishes past or present (obtained from the person, an advance statement or others such as family members or paid carers).
  • How the person was supported to understand the nature of the decision and the options available.
  • How the person was supported to express their views.
  • Other factors that the person would be likely to consider if they were making the decision for themselves.
  • Who else was consulted (e.g. family, close relatives, anyone previously named by the person as someone to be consulted, or other people involved in the person’s welfare), and their views.
  • A record of any family members who were not consulted and why.
  • The options for care and support that were considered. This includes the option of doing nothing and options suggested by family members, even though these may have been discounted.
  • The risks and benefits of each option.
  • The likelihood of each risk occurring and the seriousness of impact if they did occur.
  • The care and support that is being proposed and why this option was decided upon as being in the person’s best interests.

Promoting least restrictive care

Any intervention without a person’s consent must consider whether there are options that would meet a person’s need in a less restrictive way. For instance, if changes can be made to a care plan that means cot sides on a person’s bed are not needed, or that medication does not have to be administered covertly, these should be explored.

What to look for in the care and support plan and other records

  • Consideration of whether there is another option that is less restrictive and will meet the need.
  • If this option was not chosen, the reason why.
  • How and when the care and support plan will be reviewed to see if a less restrictive option can be applied in the future.

Care planning and the use of restraint

The MCA (Section 6.4) defines restraint as:

  • using force – or threatening to use force – to make someone do something that they are resisting, or
  • restricting a person’s freedom of movement, whether they are resisting or not.

Good care planning can often avoid the need for restraint or restrictions on a person’s movements. It can challenge institutional practices which may normalise restrictive interventions.

In some cases, a person may have capacity to consent to the use of restraint (e.g. the use of a lap belt to stop someone falling out of a wheelchair). If the person lacks capacity to consent, then the restraint can only be used lawfully to prevent harm to the person. In these cases, the amount or type of restraint and the time it lasts must be proportionate to the likelihood and seriousness of harm. Staff who use restraint without meeting these conditions are acting unlawfully.

What to look for in the care and support plan and other records

  • How the person was assessed as lacking capacity to decide upon the use of the restriction or the restraint.
  • Identification of the harm that needed to be prevented.
  • Options that were considered.
  • Consideration of whether there was another option that was less restrictive and would meet the need.
  • If this option was not chosen, the reason why.
  • How the restriction or restraint was in the person’s best interests.
  • Evidence that the restraint used was proportionate to the likelihood and seriousness of harm.
  • How and when the care and support plan will be reviewed to see if a less restrictive option can be applied in the future.

Depriving a person of their liberty: additional safeguards

The Code of Practice on deprivation of liberty (the Deprivation of Liberty Safeguards) provides additional measures to protect people’s human rights if the care and support plan so restricts their freedom that it amounts to a deprivation of liberty, either in a care home or in a hospital. These safeguards do not apply to people who are detained under the Mental Health Act (MHA) 1983 or people who receive care in their own homes.

The MCA Deprivation of Liberty Safeguards were introduced to make sure that a person may only be deprived of their liberty when:

  • there is evidence that they lack the capacity to make decisions about the restrictions or restraint that are being applied or planned; and
  • the restriction on their liberty is necessary to prevent harm and is proportionate to the likelihood and seriousness of any harm to the person; and
  • it is in their best interests and the least restrictive option to meet the need; and
  • the deprivation of liberty has been authorised by the local authority as the supervisory body (except in urgent circumstances where the managing authority – the care home – may give the authorisation for a maximum of seven days. In these cases the managing authority must submit an urgent and standard application for authorisation to the supervisory body).

The safeguards give legal protection to the relevant person (i.e. the person who may be deprived of their liberty). This includes the right to:          

  • an independent representative to act on their behalf
  • the support of an independent mental capacity advocate (IMCA)
  • have their deprivation of liberty reviewed and monitored on a regular basis
  • challenge their deprivation of liberty in the Court of Protection.

A care home or a hospital (managing authority) will need to apply to the supervisory body for an authorisation to deprive a person of their liberty when:

  • a person needs to remain in a care home in order to receive necessary care or treatment to prevent harm occurring
  • there are reasons to believe that the person may be deprived of their liberty in the next 28 days or is being deprived of their liberty.

The guidance from case law shows that determining when restrictions amount to a deprivation of liberty is often a complex issue and that many factors need to be taken into account. 

In a March 2014 Supreme Court judgement, Lady Hale said that it was axiomatic that people with disabilities, both mental and physical, had the same human rights as the rest of the human race. She emphasised that ‘the right to physical liberty contained in Article 5 of the European Convention on Human Rights, must be the same for everyone, whether or not they have physical or mental disabilities’. [18]

Lady Hale went on to state that the ‘acid test’ for determining whether or not a care and support plan creates a deprivation of liberty is whether it provides ‘continuous supervision and control’, and whether the person ‘is not free to leave’ the placement irrespective of any desire to do so. Support can be offered rather than control; choices can be explained to the person instead of decisions being made by staff and managers. For example, people can be supported to manage their money, choose their leisure pursuits and engage with wider society.

The purpose of this report is not to explore how to recognise a deprivation of liberty nor to explain the process of seeking authorisation. Providers of care services and commissioners need to refer to other sources to make sure that they understand when the safeguards may apply and the steps they need to take. The Deprivation of Liberty Safeguards offer guidance on how to identify when a person is, or is at risk of, being deprived of their liberty, how deprivation of liberty may be avoided, and the process for protecting people who are deprived of their liberty.

The important point to note here is that people who have been deprived of their liberty are among the most vulnerable, and therefore care planning must demonstrate how their rights are being protected. There must be a continuous process of review to make sure that the deprivation of liberty is still necessary and that there are no other less restrictive interventions that could meet the need.

What to look for in the care and support plan

  • How a person’s liberty is being promoted. This might be anything from going out to the local pub occasionally, to eating their preferred foods or shopping for their own clothes.
  • Attempts to take account of the person’s wishes and views as far as possible.
  • How the relevant person and their representative are being assisted to be involved in their care and support.
  • How the person is supported to maintain contact with family and friends.
  • That conditions attached to the authorisation are being complied with.
  • That there are arrangements for regular review of the care and support in order to give the person more liberty and choice and see if the authorisation is still needed.

The Mental Capacity Act (MCA) and care planning report