"It gives people a voice": The benefits of Advance Choice Documents in mental health

What is an ACD?

Making decisions about your care for if and when you’re unwell – whether it’s your mental or physical health – is vital for feeling in control of your healthcare. This is why Advance Choice Documents (ACDs) can be incredibly useful.

ACDs give people living with mental health issues an opportunity to state their wishes and instructions about treatment and care in the event of future episodes of mental health crises.

They could record things like where they would prefer to receive treatment or who should look after their pets if they’re unable to.

A recent McPin survey among people in our lived experience advisory groups, found that 96%  would consider using an Advance Choice Document (ACD), but only 50% had heard of it before.

The ACD project

The Advance Choice Documents workstream is an offshoot of another study were involved in, on mental health and justice.

It focusses on launching a new website – www.advancechoice.org – which houses information, templates and videos on how to fill out an ACD.

We spoke to McPin Senior Public Involvement in Research Officer Alex and a member of the project Service User Advisory Group (SUAG) Sue about the project, and why these documents are so important.

Sue: “It felt like it was a really good step forward for the country”

SUAG member Sue joined the project because she had personal experience of mental health issues, and was a carer for her dad who had Alzheimer’s. She also has experience of working in research and report writing, and went back to university as a mature student to do an MSc in psychiatric research methods.

“This study was a mixture of my personal and professional life that was appealing. I really  support the whole idea of patient involvement in research, in service, in design, in all sorts of things. I think it’s really important that the users are involved in the whole process wherever possible.”

The SUAG was involved in the project in various ways during its five-year lifecycle, from commenting on the ACD forms, as well as the guidance used on the advancechoice.org site.

They acted as a crucial sounding board  at various stages of the project, helping to ground the study in the real world of people who have lived experience of psychosis and other mental health conditions.

Sue says she enjoyed being involved in the study, and reviewing the materials in particular.

“That was really particularly nice for me because such a big part of my professional life had been about making language accessible and producing consumer-facing guides. So, it was really nice to be able to say that that actually reads quite jargony, can you put it in some more simple terms?”

Sue sees the benefits of ACDs for when people are unwell and not able to communicate their wishes, particularly with mental health issues which might fluctuate.

“In a way, I was almost surprised that it wasn’t already there. It seems like quite an obvious  thing to do. So it felt like it was a really good step forward for this country to have something in place.”

She also believes the website could be a big help to anyone thinking of filling out an ACD.

“I think the website and videos were a really good idea, especially the videos because it can be a bit cumbersome just reading through lots of guidance, whereas having the video is somebody actually telling you, taking you through the process.”

Alex: “People could have increased trust in mental health services”

McPin Senior Public Involvement in Research Officer Alex was brought into the project to support the public involvement element and believes having an advanced choice document is important.

“It gives you a bit of an edge because, for example, when you become unwell you might meet healthcare professionals who you’ve never met before and because you present as unwell they don’t deem you as ‘well enough’ to know what’s best for you.

“So they could make decisions like ‘oh we’ll try this medication’ which might not be the right medication for you. You might have had a bad time on that medication previously but the new professionals you’re dealing with don’t know about that.

“If you start saying that you don’t want to take the medication it’s seen like you’re dissenting, as though you don’t want to be treated. So they could hold that against you and make you take the medication, they could section you and say ‘this person’s not accepting that they need to be treated so we’ll put them in hospital for a while to see if the medication works’.”

Some people may be distrustful of ACDs, says Alex, because they think they might be ignored when they become unwell, so it’s important clinicians respect the wishes in the documents where possible.

“In order for the ACD to work in general, it needs to be respected and taken seriously.

“So if clinicians have the opportunity to read one about their patients at the point that the patient is in crisis, they should try and honour the word of the patient on things like which medication to take; or I prefer not to be treated in hospital; I don’t like having electroconvulsive therapy, but it’s better for me when I’m ill; who’s going to look after my cat if I go into hospital?

“All these things are very important because they affect the real life of the person who’s involved. Clinicians need to be trained and explained to that it’s very important to honour the word of the patient. They need to be fair, open and honest about why they’re making decisions that go against the ACD.

“I think if I created one, I would not want my words to be misused or ignored – I would find that disempowering. Also it’s about trust, so if I had trusted my ACD and then the healthcare professionals ignored it, I would be very disappointed at the time that I was also unwell.”

When it comes to filling out an ACD, Alex says it’s important to think very carefully about what you want to include, speaking with your family and friends and the people around you.

“They have a good idea of you and what you’re like, especially when you become unwell, so they would have a good idea for what you should include in your ACD.

“Having that conversation really helps and if you create the document in conjunction with  clinicians and your medical care professionals, that could help, because they could help you decide what’s realistic to put in the documents so that it is taken seriously.”

Ultimately, Alex believes creating ACDs – and having them followed by clinicians in times of crisis – could have a wider positive impact.

“I think that, if it works out, it could help patients have increased trust in mental health services and their treatment, and the clinicians treating them.

“It gives patients a voice, which they haven’t necessarily had before, and it gives them some kind of hope for the future.

“If they trust in the process and the process is stuck to, it can have a very positive outcome, with, for example, fewer hospitalisations, fewer suicides, things like that. I think that it could affect the statistics.”