The Mental Capacity Act Implementing the act in

The Mental Capacity Act: Implementing the act in the real world Anna Volkmer, Highly Specialist Speech and Language Therapist/ NIHR Doctoral Research Fellow a. volkmer. 15@ucl. ac. uk @volkmer_anna

Today’s focus: • Session 1: Assessing decision making and mental capacity • Session 2: Supported decision making and best interests decision making- what is the difference?

Learning Objectives: • Understand current mental capacity legislation; • Consider the implications of the mental capacity act legislation in relation to day care of people we work with; • Reflect on cases where decision making capacity is an area of concern. • Understand the difference between supported decision making and best interests decisions; • Identify what resources may be available to support people in decision making and communication.

Mental Capacity Legislation Mental Capacity Act 2005 England Wales • The Mental Capacity Act Code of Practice, 2007 4

What is mental capacity? The Mental Capacity Act 2005 Code of Practice (MCA 2005 Code of Practice, 2007, p. 41) defines it as: “…the ability to make a decision”

Section 1: Principles - capacity • A presumption of capacity: every adult has the right to make her/his own decisions and must be assumed to have capacity to do so unless it can be demonstrated that s/he does not; • Supported decision-making: a person must be given all practicable help to make a decision without success before anyone treats her/him as lacking capacity; • Unwise decisions: just because an individual makes what might be considered an unwise decision, s/he should not be treated as lacking capacity to make that decision; • Best interests: any act done or decision made under the Act for, or on behalf of, a person who lacks capacity must be done in her/his best interests; • Least restrictive option: anything done for, or on behalf of, a person who lacks capacity should be the least restrictive of her/his rights and freedom.

Vous trouvez qu'il est difficile à avaler actuellement. Par la suite, vous n'êtes pas capable de manger suffisamment pour vous garder en bonne santé. Nous voudrions mener une petite procédure afin que nous puissions vous nourrir par un tube dans votre estomac. Les risques de cette procédure sont de possibles démangeaisons, des saignements ou une infection.

You are having difficulties swallowing. As a result, you cannot eat enough to maintain your health. We would like to conduct a small procedure so that we can feed you through a tube into your stomach. The risks of this procedure are possible itching, bleeding or infection.

Section 1: Principles - capacity • A presumption of capacity: every adult has the right to make her/his own decisions and must be assumed to have capacity to do so unless it can be demonstrated that s/he does not; • Supported decision-making: a person must be given all practicable help to make a decision without success before anyone treats her/him as lacking capacity; • Unwise decisions: just because an individual makes what might be considered an unwise decision, s/he should not be treated as lacking capacity to make that decision; • Best interests: any act done or decision made under the Act for, or on behalf of, a person who lacks capacity must be done in her/his best interests; • Least restrictive option: anything done for, or on behalf of, a person who lacks capacity should be the least restrictive of her/his rights and freedom.

Have you ever made an unwise decision? • Run across a busy road to get a bus or train? • Eaten a three pieces of cake in one go? • Smoked a cigarette? • Left the car engine running while you pop into a shop?

Section 1: Principles - capacity • A presumption of capacity: every adult has the right to make her/his own decisions and must be assumed to have capacity to do so unless it can be demonstrated that s/he does not; • Supported decision-making: a person must be given all practicable help to make a decision without success before anyone treats her/him as lacking capacity; • Unwise decisions: just because an individual makes what might be considered an unwise decision, s/he should not be treated as lacking capacity to make that decision; • Best interests: any act done or decision made under the Act for, or on behalf of, a person who lacks capacity must be done in her/his best interests; • Least restrictive option: anything done for, or on behalf of, a person who lacks capacity should be the least restrictive of her/his rights and freedom.

What about assessing capacity? Professionals think a person who has had a stroke requires nursing care on discharge from hospital • Would you do a capacity assessment if the person seemed happy with this plan? • Would you do a capacity assessment if the person did not want to go to a nursing home?

1. 4. 10 In preparing for an assessment, the assessor should be clear about: • the decision to be made • if any inability to make a decision is caused by a mental impairment or disturbance in the functioning of the mind or brain in that person • the options available to the person in relation to the decision • what information (the salient factors) the person needs in order to be able to explore their options and make a decision • what the person needs in order to understand, retain, weigh up and use relevant information in relation to this decision, including the use of communication aids NICE Guideline, Decision Making and Mental Capacity 2018

• how to allow enough time for the assessment, giving people with communication needs more time if needed • how to introduce the assessment and conduct it in a way that is respectful, collaborative, non-judgmental and preserves the person’s dignity • how to make reasonable adjustments including, for example, delaying the assessment until a time when the person feels less anxious or distressed and more able to make the decision • how to ensure that the assessment takes place at a location and in an environment and through a means of communication with which the person is comfortable • whether involving people with whom the person has a trusted relationship would help the assessment decision.

Section 2: People who lack capacity • A person lacks capacity if s/he is unable to make a particular decision at a particular time because of an impairment, or disturbance in the functioning, of the mind or brain; • It does not matter whether the impairment or disturbance is permanent or temporary; • Lack of capacity cannot be established on the basis of a person’s age, appearance, condition or behaviour; • Decisions about capacity must be made on the balance of probabilities; • Not applicable to people under 16 years of age.

Section 3: Inability to make decisions “(1) …a person is unable to make a decision for himself if he is unable (a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicate his decision (whether by talking, using sign language or any other means). ” 17 Section 3 (1) MCA, 2005

How does decision-making capacity change? • Dementia: Often able to participate in decision-making in the mild stages but this declines as the condition progresses (Moye et al, 2007). • Stroke: Decision-making capacity may be preserved but ability to participate in a traditional dialogue about medical treatment may be impaired (Stein & Wagner, 2006). • Brain Injury: People may say the right things but lack insight (House of Lords, 2014).

Case Study: • • • Gentleman with Parkinson’s dementia New resident in a nursing home Has been recommended thickened fluids and mashed diet Has been refusing them and becoming verbally aggressive Has also sometimes been refusing medications and support with washing and dressing • What would you do to prepare for an assessment of decision making? And how would you plan to assess his decision making?

• Session 2: Supported decision making and best interests decision making- what is the difference?

Advance Care Planning Supporting decision making • Happens before the decisions arise • A person is presumed to have capacity at this stage Capacity Assessment • Only undertaken if there is evidence the person may have difficulties in decision making Best Interest Decision Making • Only undertaken if the person has been assessed as lacking decision making capacity

1. 2. 10 Support people to communicate so that they can take part in decision-making. Use strategies to support the person's understanding and ability to express themselves in accordance with paragraphs 3. 10 and 3. 11 of the Mental Capacity Act Code of Practice. NICE Guideline, Decision Making and Mental Capacity 2018

3. 11 Where people have specific communication or cognitive problems, the following steps can help: • Find out how the person is used to communicating. Do they use picture boards or Makaton (signs and symbols for people with communication or learning difficulties)? Or do they have a way of communicating that is only known to those close to them? • Are mechanical devices such as voice synthesisers, keyboards or other computer equipment available to help? • If the person does not use verbal communication skills, allow more time to learn how to communicate effectively. Mental Capacity Code of Practice 2007

1. 5. 15 When making best interests decisions, explore whethere are less restrictive options that will meet the person's needs. Take into account: • what the person would prefer, including their past and present wishes and feelings, based on past conversations, actions, choices, values or known beliefs • what decision the person who lacks capacity would have made if they were able to do so • all the different options NICE Guideline, Decision Making and Mental Capacity 2018

Problems for health and social care professionals: • They may struggle to identify and differentiate communication disorders (Ferguson et al, 2010, Jayes et al, 2014) • Working with this group may be difficult and time consuming • Materials or tools to support communication may not always be available • Staff may not be trained to use them (Jayes et al, 2014)

Communication difficulties • Dysarthria: impairment of speech due to weakness, reduced range of movement or in co-ordination of muscles • Dyspraxia: impairment of motor control of speech and articulation • Aphasia: impairment in understanding and using language (verbal & / written) • Cognitive communication difficulty: Communication difficulties arising from ranges of possible cognitive difficulties

How can you support the timing and environment? • Noise • Time of day • Lighting • Hearing aids • Glasses • Family / friends

We would like to conduct a video fluoroscopy x-ray to assess your swallow function and manage your dysphagia. One of the risks of this procedure is exposure to radiation. • • We can video your swallowing. To do this we need to do an x-ray. This will help us make eating and drinking safer. X-rays use radiation

We can video your swallowing To do this we need to do an x-ray.

Prepare • • Group information into chunks Pause before and after key information is given Break long sentences into multiple shorter sentences Repeat key information in different ways Use added gesture, drawing and other resources e. g. photos State the implications explicitly Deal with one issue at a time Use active not passive language Zuscak et al, 2016

Activity: providing support • Read the case about the patient and decision • Work in pairs to identify: – What is the decision – What is the relevant information the person needs to know about the decision – How you can support them to make a decision

Mrs Flounder • 83 years old lady with vascular dementia • She has difficulties with understanding complex sentences and needs information to be provided in single words or in the right environment • She is often incontinent and needs help from staff, and is often embarrassed by this • Her husband has recently died (this was expected), she has been told and has been appropriately tearful • Her family are unsure if she should attend the funeral • They ask for your help in talking to her

Preparing written information • See guidelines for specific clinical groups (Stroke: Connect, Stroke Association, NIHR: Dementia: DEEP; ALD: Mencap, CHANGE, DH; BI: Headway) • • Use simplified language Use clear large print (lower case, sans serif font at least size 14) Use bold, headings, text boxes to highlight important information Break up text using line spacing, bullet points, headings, white space • Use clear photographs / diagrams to illustrate important single ideas Jayes, 2016

Tools to support communication Talking Mats©

Summary • A person with communication difficulties may be able to make a decision but may require support to access the conversation • Health professionals must make adaptations to their communication to make decision making accessible for these people • Speech and language therapists may be able to provide support in this situations

Disclaimer It is important to note that the information contained in this presentation provides only an overview of the legal requirements for managing decision-making capacity and other aspects outlined in the Mental Capacity Act, 2005 and the Mental Capacity Act NI, 2016. Attendees should ensure they have read and understood the relevant legal framework for their location and refer to this when planning and conducting capacity assessments or any other practice related to this. They may also need to seek expert legal opinion in some cases. The presenter cannot take any responsibility for attendees’ practice that is not consistent with the law.

@volkmer_anna