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

Neurological damage and speech, language and communication impairments

Language can be broadly separated into speaking (producing spoken language), understanding (comprehending spoken language), writing (producing written language) and reading (understanding spoken language). None, some, or all of these areas may be affected following stroke or other neurological damage. This may mean, for instance, that a person is able to read but not write, to talk but not understand, to sing but not talk. Our body ‘language’ including gesture and facial expression, as well as subtle changes in our prosody when we speak also affects the meaning of the message we are trying to convey or understand.

                                      

 Picture from here http://thebrain.mcgill.ca/flash/d/d_10/d_10_cr/d_10_cr_lan/d_10_cr_lan.html 

When a person presents with an acquired language impairment following neurological damage we call this Aphasia. This is usually caused by damage within Broca's area, Wernicke's area or the 'language loop' connecting to the two within the person's left hemisphere. The severity of aphasia may lie anywhere on a spectrum from very mild to very severe. Aphasia can impact any or all modalities (speaking, understanding, reading or writing) - so it does not follow that because a person is unable to speak they are therefore unable to understand what is being said. Or, just because they can write they can read: a person may for example, have severe difficulties talking but only mild difficulties writing and understanding, as well as a moderate difficulty reading.  In this case it may be helpful for this person to have a pen and paper handy to write words down that they aren’t able to say. On the other hand, they could have moderate difficulty understanding another person’s spoken language but have no difficulties reading or in recognising the emotional content of speech; in this instance it would be helpful then for their conversation partner to write words down as they are talking, to slow down and to increase their non-verbal communication.

A person may also present with speech difficulties (rather than, or as well as, a language impairment). So, a person’s facial muscles may not be working as well as they should be causing speech to be slurred/jerky/quiet. If a person has a motor speech impairment such as this, we would not necessarily expect them to have any impairment of comprehension (as it is the muscles that are the problem, not the language) but we may need to help them find a strategy to make themselves understood (using a pen and paper for instance, or using closed questions requiring a yes/no response).

Because of the nature of brain damage, it is rare for one exact and isolated area to be affected but for all other areas to remain unaffected. Often the symptoms caused by stroke or other brain damage do not fit into one neat box. In addition to some of the specific language and communication deficits outlined above, a person may have comorbid difficulties in other areas such as a limb apraxia which causes difficulty with muscle co-ordination; they therefore may have difficulty using gesture to express themselves or using a pen to write. They may have difficulty with executive function, such as short term memory, and so forget what they are saying or what they have just heard, making conversation very challenging. They may have an impairment of planning and monitoring, resulting in their speech going off on tangents and them ‘never getting to the point’, frontal brain damage may result in the production of very inappropriate or disinhibited speech such including swearing or hypersexual language.

Recognise Aphasia

It is an exciting time to be a Speech and Language Therapist working in Nottinghamshire Healthcare NHS Foundation Trust, County Healthcare Partnerships', Stroke pathway.

On 23rd June, as part of the Giving Voice campaign, our service will be co-hosting a fantastic event for people with aphasia, caregivers and healthcare professionals. Our co-hosts are experts with aphasia who are members of a local self-help group, Aphasia Mansfield.

        

If you are within close proximity to Mansfield, UK on the day, and are interested in finding out more, we would love you to come along and join us for free cake in our aphasia friendly cafe.

If you can't make it, do not despair! You can still get involved by using the hashtag 

                                #RecogniseAphasia 

to tweet any aphasia facts, experiences, communication tips, or questions to raise the desperately-needed awareness about this condition which affects more than 375,000 stroke survivors in the UK.

Watch this space and #RecogniseAphasia.

A review of a review

Today was the fourth journal club meeting and, I felt, the most interesting yet. All articles evoked in-depth discussions around both their quailty, and their application to clinical practice: how exciting!

We met at the Jazz Café in Newcastle at 11am-1pm; finally, the perfect venue and the time. From now on we will aim to hold all meetings here (thanks Jazz Café!)

Three articles were discussed, the first of which will be reviewed here today:

Singh, S. & Hamdy, S., (2006). Dysphagia in Stroke Patients. Journal of Postgraduate Medicine, 82, 383-391.

This paper provided a useful overview of dysphagia, assessment, compensatory, and therapeutic, methods. We all felt that it was especially useful for newly qualified SLT graduates as revision.

Although the paper is entitled a ‘review’, there is no clear introduction as to its aims, and the purpose and structure of the paper was muddy at times, though each section was very clearly written and accessible. A significant proportion of the article referenced the author’s own research into the bilateral cortical representation of swallowing and that this neuropathology may be what makes possible the neuroplasticity enabling so many to recover swallow-function after the acute stages of stroke recovery (i.e. swallow function can hop over to the other cortex),

The review highlighted that the goal of assessment in dysphagia was not to determine whether or not someone had dysphagia, but rather to build a profile of that person’s swallowing difficulties (and strengths). It notes that 50% of patients who pass bedside assessment were shown to silently aspirate when assessed using the gold standard of videofluoroscopic assessment. In terms of management, the authors write that the goals of dysphagia therapy are to reduce the morbidity and mortality associated with chest infections, to improve nutritional status and to return patients to a normal diet, with resultant improvement in their quality of life.

It is clear from the paper that there is a lack of good quality evidence for swallowing rehabilitation. The authors suggest this is likely due to the ethical restrictions of randomised control trials in dysphagia studies (using people who aspirate as controls would be unsafe in some instances). The most effective evidence, they note, comes from a study by Shaker et al. (2002), which describes an exercise aimed to strengthen the upper oesophageal sphincter, and thus remove post-swallow pharyngeal residue in patients with chronic dysphagia. This exercise requires the patient to lie in the supine position, raise their head from the bed for a few seconds and then rest their head down again. They are to repeat this 20 times. In addition, pharyngeal electrical stimulation was also found to have a possible therapeutic role (Fraser et al., 2002).

The paper discusses issues around enteral feeding and notes the importance of nutritional considerations when managing dysphagia.

Journal club discussions arising from paper

Interesting that most evidence for dysphagia rehabilitative exercises is anecdotal, or comes from clinical experience (third arm of EBP model).

Paper showed that 50% of patients who passed bedside assessment where shown to be silently aspirating on VFSS. Clinical implication of this and discussion around the fact (not discussed in this paper) that a proportion of the elderly population aspirate without having had a stroke, and some of these are at risk of chest infection and some are not. Without taking pre-stroke baseline, it is impossible to assess effectively. One of the first questions to ask a patient (or care-giver) has to be ‘what was your (their) eating and drinking like before your stroke?’

Some NQPs had seen Shaker’s exercise applied in practice. One felt that most of her (acute) patients would really struggle with this exercise because of mobility impairment/age.

Some people had seen O2 saturation used as a bedside indicator of aspiration within clinical practice.

The paper makes reference to some unpublished data in the authors’ department to support an argument but without giving further details of how to access this data, this was felt to reduce the quality of the review.

There was a quiz at the end of the review to test the reader’s understanding and/or learning. Readers found this very useful: take note potential authors!

References

Fraser, C., Power, M., Hamdy, S., et al. (2002). Driving plasticity in human adult motor cortex is  associated with improved motor function after brain injury. Neuron, 34, 831-840.

Shaker, R., Easterling, C, Kern, M., et al. (2002). Rehabilitation of Swallowing by exercise in tube-fed patients with pharyngeal dysphagia secondary to abnormal UES opening. Gastroenterology, 122, 1314-1321.

Reasonable adjustments in retail: money handling

The other day I was supporting a teenage girl during a shopping trip. On every trip we set goals related to independence. The young woman has cerebral palsy and has little speech that would be understood by unfamiliar listeners. She uses a variety of means to get her message across including gesture and an electronic communication device. Her physical difficulties mean that she is not able to perform fine motor tasks, such as opening a purse.

The teenager, who I will call Jessie, decided she would go into a popular music store by herself, pick out an item, take it to the counter and pay for it. As usual, she was excited to complete this goal. I would wait outside and have nothing to do with the encounter.

When she arrived at the counter, with the chosen CD in her lap, the woman at the counter said she couldn't open Jessie's purse as she was not allowed. Jessie felt frustrated and upset because she was not physically able to open her own purse. A queue began to form. A lovely customer came forward to open Jessie's purse for her, take the money from the purse and give it to the woman working there. It turns out that Jessie was just shy of the amount needed, which added to her embarrassment of being effectively refused service while a queue of people formed behind her. The gentleman insisted on giving her the difference so she could buy the CD. The kind gesture was juxtaposed against the inflexible background of the encounter and she was on her way, grateful, frustrated and dependent.

After Jessie told me what happened we went back in and spoke with the manager to see if we could problem-solve our way to solution which would allow Jessie to feel she could independently come into the shop in the future and buy an item. I acknowledged that we understood staff may not be able to open purses for their own liability, but asked where this left the customer? The manager was understanding and sympathetic; he said that he and the majority of staff there would have, in fact, just opened the purse without making an issue of it. They would have viewed the situation holistically and reasonably - Jessie had just been unfortunate with the member of staff with whom she had had the encounter. I asked him to hold a staff meeting so that all staff would be on the same page regarding this issue, which will affect a lot of customers. He agreed to do this and we left satisfied with the solution.

                                                   

Why am I sharing this?

• Many people with communication difficulties and disabilities will not have the support to bring up this topic themselves and it is something that needs to be discussed.
• It is understandable that staff would want to protect themselves from being a suspect in a possible scenario of money going missing from a vulnerable person's wallet.
• Lots of shops and fast food places do have broad policies regarding not opening a customer's purse to take out money. 
• If the above policy is in place, staff they may understandably feel bound to it and not see room for manoeuvre. They may see it as a safety net for self-protection. If it is there, they are entitled to adhere to it, whether or not this ruins a customer's day. 
• One-size cannot fit all.
• Staff working behind the counter are known and checked by the retailer. Other customers are not. Where is the retailer's concern for the customer with a disability when they force them to choose between relying on an unchecked member of the public to open their purse, or not be served? Is it fair on the other customer, who is in the store as a customer and not as a paid member of staff?

Under the Equality Act (2010), providers must make reasonable adjustments where a practice, policy or procedure makes it impossible or unreasonably difficult for a disabled person to make use of the service. This includes refusing a service which it offers others.

By refusing to open a customer's purse, who is unable to do this for themselves, they are refusing to serve that customer and preventing them making a purchase because of that person's disability.

Suggestions for retailers to ensure reasonable adjustments

A) Staff training around disability and reasonable adjustments.

B) Ensure the shop has adequate security footage so that it records any handling of money behind the counter to protect the employee and the customer.

C) Be explicit about the money you are taking out of the purse so that the exchange is transparent to both the customer and any other customers present "Ok, I'm taking out £10 and your total is £5.50 for items X and Y, so here is your £4.50 change. Shall I put it in your purse with your receipt?"

D) If the above is not possible, consider the following policy: a member of staff can assist a customer in opening their purse and collecting change when observed/signed-off by a second member of staff.

E) View each person as an individual and make adjustments accordingly.

Suggestions for customers with disabilities to ensure reasonable adjustments: know your rights

Programme phrases into your communication aid including "please take my purse and open it as I am unable to do this myself", "can you get another member of staff to watch as you take money from my purse?" "Can I be served by the manager?/I would like to be seen by the manager" and even "I need you to make reasonable adjustments for me".

Remember

Social attitudes make people disabled: with the right support everybody can have the same rights.  Send this post to anybody you know in a customer service position which includes handling money e.g. transport/food/banks/retail. The more people who see this, the greater chance we have of changing things and making the world a more equal place.