Suzanne Snowden née Hardy, BSc, MSc, MRes, is a PhD Candidate at the Institute of Gerontology. Suzanne's research interests include dementia, health and disability, older adults, health psychology, and sport and exercise psychology. She also has a particular interest in research design, research ethics. and the Mental Capacity Act (2005). Suzanne's PhD project has a mixed-methods multiple case study design and aims to investigate the use of Assistive Technology by people with dementia to assist in Activities of Daily Living (such as toileting, grooming, eating, and washing). Examples of such Assistive Technology include brightly-coloured raised toilet seats, easy-handle cutlery, dressing aids, and water-temperature sensors. Suzanne works part-time as a Dementia Support Worker for Alzheimer’s Society in the borough of Southwark London.
Hello I’m Nigel Warburton, joining me today is Suzanne Snowden an ESRC sponsored PhD Candidate in the Department of Global Health and Social Medicine at King’s College London. Suzie, we’re gonna focus on ‘Research and the Mental Capacity Act’. What is the Mental Capacity Act?
The Mental Capacity Act is a piece of legislation that was passed in 2005 and came into force in 2007, and it protects people who might be considered vulnerable when making decisions that might affect their care or financial decisions that they need to make, at the time those decisions need to be made. And it only covers adults, so from age 18 plus, and it only applies in England and Wales.
So if I’m doing a piece of research involving people who might have some kind of mental incapacity, what do I have to do what sort of hurdles do I have to jump over?
You have to complete what’s known as the Two-Step Test, and the Two-Step Test consists of two questions. The first of these questions is ‘Does this person have an impairment in their mind or brain that might affect their ability to make a decision for themselves?’.
Ok so we assess that and I say the person in front of me clearly doesn’t have an impairment?
If the person doesn’t have an impairment then you are good to go, you can get their consent give them your information sheet and carry on with your research as normal.
But in most cases where this is relevant we’re going to recognise that potentially at least somebody has some kind of limitation, some way in which they will be covered by the Act. What then?
So then you need to go on to the second stage of this Two-Step Test, and this is your Capacity-to-Consent Assessment. It’s more like a conversation with your potential participant, but in that conversation they have to demonstrate that they can do four things. The first of these is that they can understand: about the project, research in general, and what it is that you want from them. The second is that they can retain that information at least for as long as that conversation continues. The third is that they can weigh up the risks and benefits of taking part in the project and if they understand the consequences of being involved or not being involved. And the fourth is that they can communicate that decision back to you, which of course you would think is always going to be with language, verbal language, but when it comes to people with dementia sometimes that might involve a hand squeeze or a hand stroke or even a blink it really depends on the person.
So if I were having that conversation with you consenting to be in this podcast obviously you do have capacity but say I thought that maybe there’s some hints that you didn’t have capacity to consent and give informed consent to be in this podcast, I go through a conversation with you [whilst] ticking off those four questions. If I think that you are ok on those four questions once again can I go ahead and do the interview?
Absolutely yep then you’ll just go on to just get consent from the person, get that written down, signed, and off you go.
But what if in one or two of those areas you fall short in meeting the criteria, what then?
If you don’t meet even one of those four then that means you are deemed as lacking the capacity to consent to participate in that project. So it’s just for that decision, that doesn’t mean that I can no longer make any decisions at all, all the conversation was was for this one decision.
So the decision in relation to the particular piece of research that you want to carry out?
At that moment?
At that moment yes.
Because I could imagine that six months later somebody with dementia it’s gonna be a very different issue potentially from the moment when you do this test, presumably you are going to go through this checklist at the very moment that you are going to do this piece of research?
Yes there’s some designs… for example you might want to do an interview with a person once every three months and so it would be best to assess their capacity at the beginning of every one.
And this has to be recorded as well this is part of the Act it’s not just “Oh yeah, I ticked that box” it has to be physically recorded?
Yes it’s very important to use a tool. Now there are some already published tools out there that contain all those four criteria but you can create your own tool you don’t have to use anything that’s already you know been published.
But the main thing is to keep adequate records of what you’ve done otherwise it’s just your word against somebody else’s that you sought consent and it would be tempting obviously to bypass that.
Yes you’ve got that record and since it’s entirely likely that you may be with the person alone it’s good to have it written down what happened. If you’re a researcher you should be abiding by ethical and moral written and unwritten rules anyway, so I would like to think that a researcher wouldn’t just say “Oh hey this person has capacity” just because they’re desperate to have them in their project I mean that’s that’s wrong.
So imagine I go though there I failed on at least one of those questions I don’t meet the criteria, does that mean I can’t be part of your research?
Absolutely not and this is why the Mental Capacity Act is very clear on the next few steps. Now, if I was doing this [Two]-Step Assessment for any other type of decision not to do with research then I would talk to that person’s Lasting Power of Attorney. But when it comes to research the process is very different which is why I was very keen to talk about it today. What you do is you find a person who is interested in the welfare of that person such as their spouse or adult child for example, and they become that person’s Personal Consultee. And what you’re doing with this Personal Consultee is talking to them about what they perceive the potential participant’s views and wishes would be had they the capacity to consent for themselves.
So what if the person doesn’t have a close relative to hand who is prepared to do that, does that mean they can’t be part of the research?
No this is written in the Mental Capacity Act too, so if there’s no Personal Consultee then you find a Nominated Consultee and the difference with this person is, this person could be a paid professional, whereas a Personal Consultee they cannot be a paid professional involved with that person. Whereas this Nominated Consultee could indeed be their solicitor or GP or a social worker who knows the person and can advise you on what they perceive the person’s wishes would be.
Are you saying that the Personal Consultee or the Nominated Consultee is a proxy, somebody who stands in giving consent for somebody who we assume would have given consent had they been able to give consent?
I want to make very clear the difference I see between the word proxy and a Personal Consultee. A proxy is someone who is giving consent on behalf of that person it’s like they’re that person’s voice, whereas a Personal Consultee very clearly needs to be aware that they have to advise on what they know the person’s wishes would be themselves.
Just to play devil’s advocate here, if I’m in a position of not being able to give my consent there are some people some relatives of mine that I would like to have that power of Consultee and others that I wouldn’t, and they wouldn’t necessarily give the same answer.
A researcher should always find out from maybe the gatekeeper or other people around that person with dementia what their wishes might be anyway. It’s possible that that person with dementia maybe wrote a Statement of Advanced Wishes about maybe in case they were asked to be in research in the future I don’t think it’s very likely but I guess you do just have to trust the Personal Consultee’s opinions.
Presumably a potential research subject could meet all the criteria but you might still have qualms even though within the Mental Capacity Act you would legitimately have the right to include that person in the research it might still have a hesitation about it.
Absolutely and the Act does say that even if the Personal Consultee said that it might be alright you should certainly be still viewing that person maybe look at their body language “Does this person want to be in my focus group?”, not just are they running out the door but are they shouting are they looking away you know look at that person for any cues that might indicate they don’t want to be there.
What if somebody is deemed by their Consultee unsuitable for this sort of attention that they can’t give consent and they wouldn’t have wanted to do this, does that mean you can’t do research that relates to those people?
Suzie: Actually no because the final decision still lays with the researcher, that Personal Consultee yes could have said “I don’t think the person would have wanted to be involved”, but the guidelines do state the final decision stays with the researcher. However in my case these Personal Consultees I wanted to be participants at a later stage of my project and it was in my best interests to keep them on my side, and it was very important that I made sure that relationships with the care homes within which I was doing this research were maintained and I certainly didn’t wanna be the cause of any upset in such a delicate and sensitive topic.
That’s very interesting because that means the Consultee doesn’t have the power of veto; all you have to do in the Mental Capacity Act is prove that you involved the Consultee?
Yes you have to show that you consulted carers even before you do that Capacity-to-Consent Assessment and then when you ask them to be a Personal Consultee later.
Just let me summarise where we’ve got to here, if you’re gonna do some research that might fall under the Mental Capacity Act the first question you have to ask is ‘Does the person I’m interviewing or does the person that’s gonna be involved in my research have some kind of impairment?’ If not, it’s the normal consent an adult can consent to take part in the research no problem. If they do have some kind of impairment, you ask them a further four questions in conversation. Keep a record of their answers if they fail on one of those four questions to demonstrate capacity to give consent then at that point you have to bring somebody else in. You have to have some kind of Consultee either a Personal Consultee who’s a friend or relative somebody who’s close to the person who can give their opinion about whether the person would have given consent, or you get a less closely connected kind of Consultee who is a Nominated Consultee like a solicitor or doctor perhaps who can take that role themselves. Now as a researcher you’re not obliged to go with the view of the Consultee, that’s something that goes into the mix you make the decision on the basis of that. So you make a decision and you record your decisions and that’s the good thing about the Mental Capacity Act, is it forces researchers to do that. Now what’s your experience of this sort of process in practice?
It takes a long time. It’s very easy to researchers to design a project and you think “Oh this Assessment business it will be done in a couple of weeks”… it’s gonna take ages. You’ve got letters to send, you’ve got responses to wait for, you might have to involve your gatekeepers to keep nudging those Personal Consultees: “Hey call that researcher back”. You gotta rely on a lot of people and design a lot of time for that aspect of it whereas you wouldn’t [have] before necessarily.
So this is a kind of safeguarding nevertheless although it’s a hassle for the researcher it’s a hassle which means both the appropriate consultations have gone on, but also that you have a record that it’s gone on, so that the researcher is protected if there’s ever any question about this as well.
Absolutely you’re protecting yourself and you’re protecting the people that you want to do research on too.
So you’ve just completed your PhD on dementia and you’ve had to use the Mental Capacity Act in getting permission getting consent where possible for people to be involved in your research, what advice would you give somebody just setting out in this area?
I think it’s really important to talk to someone who’s gone through it. I had an informal conversation with an Old Age Psychiatrist actually to understand about this conversation, these four things that I need to get from the person, and we role-played what it’s like because at least at the time there were no videos on the internet of what one might look like, there was no formal training for researchers. I did do some training for care home managers on how to do this Capacity Assessment but since the things that you do afterwards are different for researchers it was helpful but it wasn’t that helpful, so yeah talk to someone who’s gone through it. There are easy-read versions of what to do around, there is the Code of Practice that comes with the Mental Capacity Act that sets it all out in lay language very very clearly. And in terms of doing the Assessments one of the easiest things for me was to have a loved one or someone known to that person with dementia with them they could help interpret that person with dementia’s behaviours or noises or body language to help me to understand whether they understood what I was saying to them. The carers who were around helped me to change what I was saying to get my message across, so I wanted to look at care records and instead of saying care records a carer said “Just say ‘your big blue book’ that’s what we say here at the care home” and for me just knowing that really helped my communication with these people.
Suzanne Snowden, thank you very much