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Home | Working with Voices | Medication | Making an informed choice

Making an informed choice

Home | Working with Voices | Medication | Making an informed choice

“The side effects aren’t sort of unbearable, I’m able to live with them so it doesn’t have too bad … they seem to have been keeping me well for about 12 years. So, generally speaking, I am glad to be taking it, it seems to be working.”

Interviewee 18

“It’s a balancing act and I have to keep reminding myself with those lists of negatives, you don’t want to go back to hospital and you don’t want to be unwell for 12 months.”

Interviewee 15

In this moment, the meaning of Moncrieff’s use of the term ‘emotional detachment’ hit home and I realised that The Meds formed a buffer between the world and me. I decided, then and there, that the cost of this buffer was far too high. I wanted my life back.”

Rai Waddingham

I was given antipsychotics 25 years ago with no informed consent and I believe that being on these drugs for so long has made the voices worse.”

Bish*

“The side effects aren’t sort of unbearable, I’m able to live with them so it doesn’t have too bad … they seem to have been keeping me well for about 12 years. So, generally speaking, I am glad to be taking it, it seems to be working.”

Interviewee 18

“It’s a balancing act and I have to keep reminding myself with those lists of negatives, you don’t want to go back to hospital and you don’t want to be unwell for 12 months.”

Interviewee 15

In this moment, the meaning of Moncrieff’s use of the term ‘emotional detachment’ hit home and I realised that The Meds formed a buffer between the world and me. I decided, then and there, that the cost of this buffer was far too high. I wanted my life back.”

Rai Waddingham

I was given antipsychotics 25 years ago with no informed consent and I believe that being on these drugs for so long has made the voices worse.”

Bish*

Unless they are detained under the Mental Health Act, everyone has the right to make an informed choicequestion icon about their psychiatric treatment. To make sure they have all the facts they need to do this, prescribers should give people up to date information about their medication options – including why it might be useful, any significant risks and any alternatives. Here, we explore the idea of informed choice and consent, including times when someone’s consent can be overridden.

Informed choice is an important part of the consentquestion iconprocess. Valid consent can only be given if a person:

  • Has the capacity to make the decision – they can understand and consider the pros and cons of a decision and communicate it to someone, with help if necessary. (For more on what mental capacity is and how it is assessed see this information from Rethink.)
  • Has enough information and time (where possible) to make an informed decision, including (in the case of medication) what its benefits should be, its chance of success, significant risks and alternatives.
  • Gives consent freely, without undue influence from others (including family members and healthcare practitioners).

There are specific circumstances where consent is not needed – for example, in an emergency situation when someone is unconscious, and their life is at risk or when someone is subject to specific sections of the Mental Health Act (1983). However, in all other circumstances consent is a legal right.

It is a general legal and ethical principle that valid consent must be obtained before starting treatment or physical investigation, or providing personal care, for a person. This principle reflects the right of patients to determine what happens to their own bodies and is a fundamental part of good practice. A healthcare professional (or other healthcare staff) who does not respect this principle may be liable both to legal action by the patient and to action by their professional body. Employing bodies may also be liable for the actions of their staff.

Department of Health (2009)

Some people are confident in following their clinician’s recommendation. Some people might feel that making an independent informed choice about psychiatric medication is too much for them. That’s understandable – if someone is thinking about taking antipsychotics it may be because they feel overwhelmed already. Weighing up the pros and cons of a particular drug, or even thinking too much about the potential adverse effectsquestion icon, can be daunting.

Making an informed choice and giving consent to psychiatric treatment is an ongoing process. (Technically, there is a choice to be made at any time someone takes a tablet, attends a depot clinic or is offered a dosage change.) What this means is that if someone is not able to face thinking about the options around medication at the beginning of treatment, they have the right to consider them whenever they feel ready.

Weighing the pros and cons

Everyone has different ways of approaching decisions around medication. Here are some things people often think about when deciding:

  • The impact of current difficulties on their life and the lives of those close to them (for example, overwhelm, social isolation, strained relationships, financial worries, loss of interests, problems communicating)
  • The potential benefits of taking medication (for them and/or for their loved ones)
  • The risks of taking medication (potential adverse effects, considering their physical health and previous medication experiences)
  • Their attitude towards medication, and the way in which friends and family talk about it
  • Which adverse effects they feel able to manage or live with, and which ones would cause severe problems in their life
  • Whether there are any viable alternatives available
  • Whether the medication is for the short or long term
  • How easy it is to stop medication when it’s no longer needed
  • Any of the positive parts of their current experiences (e.g. voices they enjoy speaking with, a sense of connection)
  • How medication might affect their sense of identity (e.g. do they see themselves as an ‘ill’ person, and if so how do they feel about this)
  • What else is available to complement, or provide an alternative to, medication

What helps in decision-making?

Things that people can find useful when making decisions around medication include:

  • Talking to trusted people / allies
  • Attending a peer support group (e.g. a Hearing Voices Group or ‘Thinking about Psychiatric Medication Group)
  • Finding out about other people’s experience of medication (e.g. reading stories or watching videos from our personal experience section)
  • Learning a bit more about how medication works in the brain
  • Getting more information from the prescriber (especially if there are gaps in someone’s knowledge or questions they want answering)

One way of drawing together all of people’s different thoughts and feelings around medication in order to decide is using a ‘decisional balance sheet’. Some people choose to fill it in alone, but others talk it through with someone close to them or someone whose opinion they value.

It’s important to fill in the chart as fully and honestly as possible – even if some of the concerns or statements don’t feel logical. People often start with the square they find the easiest to complete and then work from there. The goal is simply to understand more about the different feelings, hopes and concerns people have around making a change in medication.

Sometimes, when looking at the balance sheet, people feel there is an obvious choice to be made. When it feels less clear there may be some more conversations to be had, or more information needed.

Download a 'decisional balance sheet'

Shared decision making

In the field of mental health, where there are different treatment options, ‘shared decision making’ is one approach to encouraging both patient and clinician to share information and reach a consensus where possible. Ideally, when a decision is made to take any particular medication, both parties should agree that the benefits outweigh the risks, and the clinician should ensure that the minimum effective does is prescribed for no longer than is necessary. Medication options should also be reviewed as regularly as possible and whenever requested by the client.

Shared decision making is an approach that the UK government has pushed forward with the Health and Social Care Act 2012 – placing new duties on the NHS to promote patient involvement in decisions about treatment. In the UK, the NICE guideline for the treatment of first episode psychosis recommends that ‘the choice of antipsychotic medication should be made by the service user and health care professional together, taking into account the views of the carer if the service user agrees’.  Nevertheless, almost 60% of UK people with a diagnosis of schizophrenia who use mental health services say that they are not involved in decisions about their treatment.

Find out more

Read

Helping people share decison making, The Health Foundation

Angela Coulter and Alf Collins. Making shared decision making a reality. The King’s Fund.

Making decisions about your care, NICE website.

Matthew Broome (2017). Shared decision making: does it help people with psychosis?. The Mental Elf.

Watch

Pat Deegan. Common Ground.

Pat Deegan talks about personal medicine and shared decision making.

When consent isn’t part of the process

In England, the Mental Health Act (1983) sets out specific circumstances when someone can be detained and given treatment against their will. For example, people who are detained under a ‘Section 3’ or a ‘Section 2’ may be given medication without their consent. However, the person is entitled to a second opinion doctor’s review, advocacy and can also appeal via a Tribunal.

When someone is discharged from a section, they usually regain the right to give (or withhold) consent. Some people who have been subject to a section are discharged from hospital using a ‘Community Treatment Order (CTO)’. This order sets out some conditions that the person must agree to in order to be discharged – usually involving attending medical appointments and taking prescribed medication. Legally, people can still decide not to take the medication they are prescribed whilst on a CTO. However, if the clinician responsible for their care is concerned about deteriorating mental health they have the power to ‘recall’ them to hospital where they can be forcibly treated.

On occasion, some people – including those who have never been subject to a section – feel coerced into taking medication. This may be to reassure family members, friends or a clinician. It could be the result of a direct threat (‘if you don’t take this medication we will section you’), or something more subtle. For some, the knowledge that people can be sectioned and forced to take medication is coercion in itself. People describe feeling afraid to ask too many questions or say ‘no’, just in case they are sectioned.

A good and ethical medical practitioner should do their best to discuss treatment options with people and give them space to decide, where possible. If someone wasn’t able to think clearly or retain the information – for example, because the voices were overwhelming – this can be revisited at any time.

Making an advance choice

Whilst advance decisions are not legally binding, some people find making an advance statement can set out what treatment options are (and aren’t) acceptable to them and so help them retain some control. The treating team should take these into account, although in practice the impact of advance statements varies. A recent review of the Mental Health Act is pushing for greater weight to be given to advance choice documents and stricter controls on forced treatment. The government has agreed – in principle – to implement advance choice documents.

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