The Right to Choose The culture behind the Mental Capacity Act (MCA)

every adult has the right to make their own decisions Our lives are full of decisions, from the everyday to the serious and life changing decisions. The Mental Capacity Act covers all decisions that can be made. The Act starts with the assumption that every adult over 16 is able and therefore has the right to make their own decisions.

Empowerment Power It’s all about the POWER in empowerment and who holds that power. Empowerment is supporting and enabling the people we work with to have as much control over the decision in their life as possible.

Care & Treatment decisions We will be supporting our patients with important decisions about their care, treatment and / or accommodation. What do out patients’ need in order to be able to make informed decisions about their care, treatment and / or accommodation?

…it’s all about Our patients need information about their options and the potential risks and benefits of each option and how it might effect them. Information is about effective communication and our ability to communicate important information to another human being How do we make our communication with our patients the most effective? How do we make sure the information we are giving our patients maximises the potential for them to make an informed decisions and be in control?

? How do we know if our patients have understood?

Consent How our patients exercise control Difference between implied and explicit consent – that difference is having the capacity to give and giving informed consent To ensure our patients are giving informed consent, we need to ensure they understand the information about their care, treatment and / or accommodation. We need to ask them to relay information about their options and decision to us in their own words.

The 5 Principles of the MCA The Safeguards of the Act 1. Start by assuming the person has capacity to make the decision for themselves Every adult has the right to make their own decisions If we claim someone lacks capacity we must provide proof – the two stage assessment of capacity 2. Do everything practical to help a person make a decision for themselves Using different forms of communication / providing information in an accessible format Having a structured programme to improve the person’s capacity (i.e. through education) We should ensure people can make as many of the decisions in their life as possible 3. A person shouldn’t be treated as unable to make a decision because the decision they make appears unwise to others We all have unique values, wishes and beliefs We shouldn’t confuse an assessment of the person’s capacity with an assessment of what we believe is in their best interests

The 5 Principles of the MCA The framework for making decisions on behalf of someone who lacks capacity 4. Any decision made on behalf of a person who lacks capacity must be in their best interests Follow the best interests checklist The exception to the best interests principle is if the person has made a valid advance decision to refuse treatment, or is being involved in research, as other safeguards apply in these circumstances 5. Before the decision is made consideration should be given to whether there is a lesser restrictive course of action Best interests decision making is restrictive as the person is no longer in control over the decision Can we avoid making a decision on the person’s behalf? Can we delay the decision so that the person can make it for themselves when they regain capacity? Can we act in accordance with their views? How can we facilitate the person having the most amount of personal freedom? Promote the person’s rights

The assessment of capacity The two stage test 1. The Diagnostic Test Is there an impairment or a disturbance in the functioning in the mind or the brain, that is affecting the person’s ability to make a decision For example: mental illness; dementia; learning disability; physical or medical conditions that cause confusion, drowsiness or loss of consciousness; delirium; concussion following a head injury etc. 2. The Functional Test A person is unable to make a decision if they cannot do of any one or more of the following: 1.Understand the information 2.Retain the information 3.Use and weigh up the information as part of the decision making process 4.Communicate their decision Capacity is always time and decision specific

The consent / decision making process Autonomous decision making Substitute decision making Start by assuming Person has capacity Duty to give information in the Person’s preferred method of communication Person has capacity to make the specific decision at the time it needs to be made Person lacks capacity to make the specific decision at the time it needs to be made Need to document a two stage capacity assessment Decision made by appropriately qualified decision maker – not Next of Kin Need to gain Person’s consent to provide care, support and treatment Decision regarding care, support and treatment made in Person’s best interests (the exception being where valid Advance Decisions or a relevant Lasting Power of Attorney (LPA) apply) Person has the right to make their own decisions, even if they appear unwise They could consider planning ahead for the future by writing an Advance Decision or by registering a Lasting Power of Attorney (LPA) Duty to meaningfully involve the Person in the decision making process Duty to consult family and friends Consider holding a best interests meeting Record and document decision making process and outcome We should be trying to support the people we work with to make as many decisions for themselves as possible Em power men t Enabling choice Empowering autonomy, independence and control

Balancing opposing forces Personal autonomy choice and control Rights, liberty and freedoms Least Restrictive option Support and intervention to meet needs Protection to safeguard from risk Exercising authority and control over the person Best interests Always aspiring to personal autonomy – choice and control

A process of elimination 1.Having capacity & making your own choices, supported decision making, retaining choice and control for the future (Lasting Powers of Attorney / Advanced Decisions) 2.Delaying the decision until the person can regain or be supported to have capacity in the future 3.Making no decision at all or acting in accordance with the person’s views 4.Lesser restrictive options 5.More restrictive options 6.Deprivation of Liberty Before you cross the line Increasing protection Capacity Assessment Authorisation DoLS / CoP Best Interests decision making Before you cross the line Right to make our own decisions

Considerations for a quality assessment Before the assessment During the assessment Following the assessment Start by assuming the person has capacity How does the person communicate? How are we going to give them information to maximise the potential they can make the decision for themselves? Do we need to break down the information or make it more accessible (i.e. by using pictures)? Will the person need specialist support such as Speech Language Therapist or an interpreter? Will the person benefit from any support from either a family member, friend or carer? Consider the environment, will this enable the person to understand the decision? Will the time and venue of the assessment enable the person to understand the decision? Start with a blank canvass – don’t confuse an assessment of capacity with an assessment of what we believe is in the person’s best interests Remember different people give different weight to different factors when making a decision Explore each option with the individual Inform the person of the outcome of the assessment and what will happen next – remember that the person has the right to challenge your assessment Record the detail of the assessment and the rationale for why you have a ‘reasonable belief’ that the person either has or doesn’t have capacity – you made need to refer to this or rely on this evidence later

The practicalities of carrying out the assessment Ensure the environment, including the time and venue is conducive towards effective communication and making the person feel at ease, consider whether it is appropriate to involve the person’s family, friends, advocate and / or carers. Start with a blank canvass and the assumption that the person has capacity to make the decision. 1. Give the person information about the decision in their preferred method of communication - what their options are and the potential risks, burdens and benefits of each option Have we given consideration to involving specialist support if appropriate? Remember different people given different weight to different factors 2. Check whether the person has understood the information: i.Can you tell me in your own words……? ii.Can you tell me the good things…..? iii.Can you tell me the bad things…..? iv.Can you tell me more about how this effects you? N.B. Avoid Closed questions and Check the person’s understanding after a few minutes Does the person understand what the decision is and why it needs to be made? Can they retain the information, use it and weigh it up to make the decision? The fact that someone agrees with you does not necessarily mean they have capacity to make the decision 3. If the person doesn’t understand, do we need to repeat and / or break the information down even further? Is there an education or support issue that can be addressed to help the person understand? The person only needs to understand the salient points Is there an education issue or could the person be supported to learn a new skill to help them make their own decisions 4. Consider if the person’s capacity is fluctuating and whether they could regain capacity in the future If possible delay the decision until the person can make the decision themselves

Balance sheet approach to best interests Option: Positives / benefitsNegatives / risks A ‘Balance Sheet’ approach is a way of weighing up the different factors that are relevant in a particular decision. The approach is to complete a balance sheet of the positives and negatives for each of the options that are available to a person. A Balance Sheet is a way of making decisions that are open and transparent, by demonstrating how a decision was made and the factors that were considered. Look for any ‘magnetic factor’ that is capable of determining the outcome of a balancing process. A magnetic factor does not only mean that that element is given distinguished weight in the balance sheet but also ‘pulls’ the evaluation of all elements in a specific direction and thus determines the outcome of the decision. In a recent case, the Court was asked to decide about the withdrawal of the artificial nutrition of a minimally conscious patient, the sanctity of life seems to have acquired such ‘magnetic importance’. The importance of preserving life was deemed to be the decisive factor which could not be outweighed by other considerations on the opposite side of the ‘balance sheet’ (e.g. past preferences of the patient, the wishes and feelings of relatives, etc.).

Staying in control (for adults 18 years old and over) Advance Decisions to refuse treatment Lasting Power of Attorney LPA (Property and Affairs) Lasting Power of Attorney LPA (Personal Welfare) Enables someone who has capacity, to refuse a specific medical treatment for a time in the future when they may lack capacity - if it is valid and applicable it has the same effect as a decision made by a person who has capacity Registered with Office of the Public Guardian (OPG) Can manage any aspect of the person’s finances and property Can make decisions about the person’s accommodation, care and treatment Can be a family member, friend or someone the person trusts, such as a solicitor (who may charge for the service) There are special rules for Advance Decisions to refuse life sustaining treatment Nominated by the person themselves when they have capacity to decide to have an attorney Cannot demand specific treatment, cannot refuse basic shelter, food and warmth Can be used when the person still has capacity or when they lose capacity (this is up to the person registering the LPA) Can only be used when the person lacks capacity to decide, if they have capacity they must decide for themselves You can contact the OPG to find out if there are any registered Powers of Attorney: -someones-attorney-or- deputy You can contact the OPG if you have concerns about an attorney or deputy (as well as submitting a multi agency safeguarding alert): ort-concern-about- attorney-deputy

Independent Mental Capacity Advocate (IMCA) When an IMCA should be involved Statutory decisions – an IMCA must be involved if the person meets the criteria DecisionKey points Serious medical treatment Defined as treatment which involves giving new treatment, stopping treatment that has already started or withholding treatment that could be offered in circumstances where: if a single treatment is proposed there is a fine balance between the likely benefits and the burdens to the patient and the risks involved a decision between a choice of treatments is finely balanced, or what is proposed is likely to have serious consequences for the patient, such as serious and prolonged pain, distress or side effects). Long term changes to accommodation Being accommodated is for more than 28 days in a hospital or more than 8 weeks in a care home. (DoLS) Deprivation of Liberty Safeguards Only the Supervisory Body can make a referral to involve an IMCA in the DoLS Assessment Process. Discretionary decisions – an IMCA can be involved if it would benefit the person Adult Protection or Safeguarding An IMCA can be involved in safeguarding decisions even if the person has appropriate family and friends. Care reviews IMCAs work with people who have been assessed to lack capacity and have no appropriate family or friends that can support, represent them and be consulted. There are instances when an IMCA must be involved if the person meets the criteria. IMCAs act as independent safeguards for people who lack capacity.

Deprivation of Liberty Deprivation of liberty Right to Liberty protected by Article 5 of the Human Rights Act 1998 Deprivation of liberty unlawful unless authorised by a process in law Deprivation of liberty will only be authorised if the person lacks capacity to consent to those arrangements, the deprivation is found to be in their best interests and it is a proportionate response to the likelihood of harm and the seriousness of that harm Hospitals and care homesCommunity Settings Registered under the Care Standards Act 2000, only applies to adults over 18 years old Person’s own home, supported living, sheltered or supported housing, or for applications relating to under 18s Authorised through the Deprivation of Liberty Safeguards (DoLS) Authorised by application to the Court of Protection 6 assessments carried out by Best Interests Assessor and Mental Health Section 12 Doctor Re X two tier application process: 1.Table top exercise 2.Full hearing Standard Authorisation grantedCourt or Personal Welfare order granted Authorisations can be granted for up to, but no longer than 12 months Relevant Person’s Representative (RPR) and / or Independent Mental Capacity Advocate (IMCA) involved Lady Hale described the “…right to physical liberty. This is not a right to do or to go where one pleases. It is a more focussed right, not to be deprived of that physical liberty. If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person.”