Mental Capacity and the role of the SLT in facilitating decision making in people with communication impairments

Introduction

In the UK, the Mental Capacity Act (2005) (easy-to-read version) has led to the creation of a new and important role for Speech and Language Therapists (SLTs). This role is to facilitate and support people with speech and language impairments and other professionals during assessments of mental capacity. In the inpatient and outpatient Stroke settings in which I work, SLTs are routinely consulted and involved in mental capacity decision making. Being involved in these assessments is something I feel passionate about and I hope to show in this post that if a person has a significant communication impairment (e.g. aphasia/dysarthria/apraxia of speech) then it is their legal right to have an SLT present to support them during these assessments to ensure they have been given the best possible chance of demonstrating their capacity to make a decision.

Earlier this year, I was lucky enough to spend a week as a rotating curator on the @WeSpeechies Twitter handle tweeting about the subject of Mental Capacity and Communication Impairment. I’m writing this post to consolidate my own knowledge, explore gaps and to share my personal views and experience in this area. These views are my own and not the views of my employer. I welcome any discussion relating to this subject.


The Mental Capacity Act, 2005

The Mental Capacity Act aims to protect people who lack the capacity to make a particular decision at a particular time, but also aims to maximise a person’s ability to participate in decision-making, as far as they are able to do so:

• A person must be assumed to have capacity unless there are reasonable doubts raised about that person’s capacity and it is established that they lack capacity.
• A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
• A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
• 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 his best interests.
• Before the assessment is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.

A person is deemed to have capacity if they can:

• Understand information relevant to the decision
• Remember that information
• Weigh up/use that information to make a decision
• Communicate their decision by talking, using sign language or by any other means

Mental capacity is decision specific and can relate to any decision that has to be made. A person may have the mental capacity to make one simple decision but not to make a more complex decision. That is, a person may have the mental capacity to decide they want a cup of tea (they can understand the concept, remember the relevant components of the decision, weigh up the benefits, and communicate in some way that they want this), but not the capacity to decide that they wish to stop carers coming into their home twice a day to help them get washed and dressed. They may have the mental capacity to make a decision relating to power of attorney but not on whether or not they should have non-oral feeding. They may have capacity to decide to return home from hospital rather than go to a care home but not to make decisions relating to a specific financial matter.

Impairment of mental capacity is a result of a combination of cognitive deficits e.g. difficulty processing, storing or retrieving information; an inability to understand potential consequences of an action; lack of insight; impairment comprehending and/or expressing information relevant to the decision.

Two things to bear in mind:

1) A specific impairment of language (aphasia) or speech (dysarthria or apraxia) does not mean that the person with that impairment lacks capacity to make a decision.

2) An unwise decision does not mean that a person doesn't have the capacity to make that decision. Trust me - I make unwise decisions every day: We do not have the right to stop someone with capacity making an informed decision, regardless of what we feel about it.

An example of a bad sign

Mental Capacity Assessments: Where do Speech and Language Therapists fit in?

The Mental Capacity Act states that 'a person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success’. That is, it is illegal to not give a person every opportunity reasonably possible to demonstrate their capacity to make a specific decision at a specific time. The Mental Capacity Act Code of Practice states: 'it is important to make all practical and appropriate efforts to help them communicate. This might call for the involvement of speech and language therapists, specialists in non-verbal communication or other professionals'. 

Communication is, at its simplest, a two way collaboration in which people work together to establish the message that one is trying to convey to the other and vice versa. It is never solely the responsibility of the patient with the communication impairment to make themselves understood or to understand what is being said to them – the listener needs to facilitate this too.

If a patient’s capacity to make a specific decision has been questioned, then in order for them to be deemed to have the capacity to make that decision, they need to be able to demonstrate that they can understand information relating to that decision and can express their choice about that decision (as well as being able to retain and weigh up the information).

As SLTs, we have received highly specialist training in language and communication (just as well...). This training, and the skills which we subsequently develop alongside clinical practice, makes our involvement in capacity assessments for people with speech, language and communication disorders invaluable. We are able to assess and diagnose the underlying impairment; are able to ensure that the way in which we present information to that person is a way which maximises their chance of understanding what is being communicated to them and to provide the most effective means and opportunities for that person to express themselves. The Mental Capacity Code of Practice acknowledges that for people with communication difficulties closed questions may be the only way to fairly assess a person's capacity. Our scientific training gives us a solid foundation to do this fairly e.g. we first assess the reliability of a person's "yes/no" response using autobiographical information, we ensure questions are asked in different ways on multiple occasions to increase the reliability of results; we vary the order in which we present “yes” and “no” options to the patient to increase validity of results. On top of this we can ensure we don't bias the results by giving away the correctness of a patient’s response via our own non-verbal communication (nodding or smiling if the patient is about to pick the correct answer / looking quizzically if they choose the wrong answer just before they change their mind) - a surprisingly difficult skill to master (you may have come across masters of this skill in interviews).

Things which will influence the type of support given by the SLT will include: the location and extent of damage caused to the brain; the communication profile of the patient including any speech, language or communication impairment(s) and any communicative strengths that that they may have; any comorbid impairments including cognitive, mental or physical impairments; personal factors e.g. a person’s willingness to interact with healthcare professionals based on past experiences; environmental factors: does capacity fluctuate?; is there potential for the person’s cognition/language to improve in the near future?; is the person anxious and therefore less able to communicate effectively unless a trusted family member is present? Is a family member's presence going to bias the results in any way?


The decision being made will influence the type of questions being explored e.g. if the decision is around discharge destination then we need to explore in depth the patient’s insight into their needs, awareness of the risk factors; problem solving abilities for safety question scenarios, and what it is the patient actually wants. If the question is around power of attorney the very different questions will need to be explored which are relevant to that decision.


Although a person may lack mental capacity to make a decision, his/her involvement in the assessment of mental capacity can help them to begin to understand the decision in question and help the assessor gain insight into what that person's preferences may be - something which will be important in best interest decision making.


Our role (as I see it)

As SLTs we are not the decision maker in a capacity assessment; our role is to support other professionals in their assessment of a patient’s capacity and to support the patient in understanding and communicating information. The lead decision maker will depend on the type of decision being made e.g. it may be a Social Worker if making decisions around discharge destination; an OT if judging a patient’s capacity to be safe in a particular environment; a doctor if making decisions around long term feeding or a lawyer if making decisions around power of attorney.


Typical format of SLT involvement in my setting

1. Building a communication profile of the person whose capacity is being questioned via formal and informal assessment.
2. Discussion with MDT members around the question of capacity being asked.
3. Liaison with relevant family members, if appropriate, to explain purpose of assessment.
4. Discussion with decision maker, agreement of questions to be asked and preparation of resources to support the assessment for that specific individual on that specific question: pictures/writing/drawings/choices/verbal.
5. Supporting assessment(s) of capacity around specific question e.g. does X have the capacity to make the decision to choose discharge destination. This will be carried out with at least one other professional; the decision maker. These assessments may need to be carried out over a number of sessions.
6. Discussion with decision maker around thoughts of assessment: did patient produce consistent responses? Does assessment show any discrepancies? Although we are not the decision makers we can give a professional opinion on our assessment of the person’s communication during the assessment.
7. Clear documentation of our involvement in the assessment and the outcome.
8. Involvement in Best Interest decision if appropriate.

What next?

The Mental Capacity Act empowers patients to be involved in their own decision making. There is currently wide variation across the UK in terms of how involved SLTs are getting in the assessment of mental capacity: from no involvement at all; to providing recommendations to the decision maker on how best to communicate with a patient during the assessment but not being involved in the assessment of mental capacity; to facilitating and using advanced supported conversation strategies to support that patient’s understanding and expression during the assessment.


In a similar way in which a person who is unable to speak English is entitled to an interpreter for an assessment, The Mental Capacity Act gives people with communication impairments a legal right to a Speech and Language Therapist to present information to them in a way which they will best understand and to give them the opportunity to express themselves as accurately as possible: I believe this measure is reasonably practicable and that providing communication strategies to another professional who hasn’t had our level of training and experience in communication is not an adequate replacement.


My colleagues have developed some great ‘staple’ resources for specific questions in a variety of formats for use within the inpatient setting. I have also found The Communication Aid to Capacity Evaluations (CACE) - FREE and Black Sheep's Supporting Adults with Communication Impairments to Make Decisions very useful resources to have available. If, as a profession, we accept responsibility for the role of lead facilitators in mental capacity assessments for people with communication impairments (which I hope we do), then we need to consider whether more standardised resources need to be created. Research is needed into whether there are certain pre-requisites which consistently identify people as having, or not having, capacity to make certain decisions.

It is important to consider that these assessments do take up a lot of time when done properly and thus take away from other clinical duties. There are, unfortunately, only so many of us and we can't be in more than one places at once. We, therefore, need to scrutinise whether what we are doing is effective and in the best interest of both the patient and the service: for example, is it always going to be appropriate to facilitate particular questions of capacity; will we always have the resources, for example, to facilitate an assessment of mental capacity around power of attorney in an inpatient setting if this assessment is not essential for the discharge planning process? We need to keep in mind how we are being commissioned for these services and ensure that we are evidencing the effectiveness of our role in these assessments. Another question which needs to be asked is: is this a role for specialist SLTs or do we all have a duty to be able to support these assessments? As this area continues to develop, we need further intradisciplinary discussions about the spectrum of SLT involvement in mental capacity decision making and more specific guidelines from the Royal College of Speech and Language Therapists around our scope of practice within this area.


I welcome any thoughts, comments or experiences you have on this topic.

Further Reading

Ferguson, A., (n.d). The contribution of Speech and Language Pathology in legal and related matters involving people with aphasia. Poster Presentation. University of Newcastle, Australia. http://www.ccreaphasia.org.au/Portals/73/Documents/Public/Ferguson_poster.pdf

Flew, R. & Holly, C., (2011). Has the mental capacity act changed the way SLTs work. Presentation. http://www.rcslt.org/news/events/Docs_2011/rachel_flew_presentation

Mackenzie, J.A. & Newby, G.J., (2008). Capacity to make a decision about discharge destination after stroke: A Pilot Study. Clinical Rehabilitation 22(116). http://cre.sagepub.com/content/22/12/1116.full.pdf

Mental Capacity Act code of practice. (2005).
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/224660/Mental_Capacity_Act_code_of_practice.pdf