Lisa is a 42 year-old woman. She has had a difficult life. She has experienced multiple traumas and has at times struggled with her emotions. Lisa has a few close family members and a small social circle, though she does at times feel a bit oppressed by them. In 2010 Lisa contracted HIV. She has been treated medically and was stable for some time, however in 2013 she started to deteriorate. She was seen by a psychologist as well as by medics. After a further twelve months she had had enough of interventions and decided she wanted to live the remainder of her life in her own way. Her family and friends objected as they could see she would rapidly deteriorate. However with support from professionals, Lisa utilised the Mental Capacity Act (MCA) to set some advanced directives. She was found to be capable of making these decisions under the MCA, and was legally allowed to refuse further intervention. Lisa did indeed deteriorate, and died a few months later in her own home with her family and friends around her.

Here’s another version of that story:

Lisa is a 42 year-old woman. She has had a difficult life. She has experienced multiple traumas and has at times struggled with her emotions.  Lisa has a few close family members and a small social circle, though she does at times feel a bit oppressed by them. In 2010 Lisa was diagnosed with Depression. She has been treated medically and was stable for some time, however in 2013 she started to deteriorate. She was seen by a psychologist as well as by medics. After a further twelve months she had had enough of interventions and decided she wanted to live the remainder of her life in her own way. Her family and friends objected as they could see she would rapidly deteriorate. However with support from professionals, Lisa utilised the Mental Capacity Act (MCA) to set some advanced directives. She was found to be capable of making these decisions under the MCA, and was legally allowed to refuse further intervention. Lisa did indeed deteriorate, and the professionals over-ruled Lisa’s decision and treated her with Electro-Convulsive Therapy (ECT).

An ECT machine

These are fictional stories but according to our current systems, this is how they could (and probably would) play out. The only difference between them is that with one there is a medical diagnosis and with the other there is a mental health diagnosis. However, this detail leads to a wholly different intervention. In the first, Lisa is permitted to die in her own way, in the other her decisions are over-ruled. So why the difference?

In medical settings a person can give an advanced instruction that they do not want further treatment even if their life is at risk. If they lose the ability to make decisions, the MCA protects their right not to be treated. In mental health settings a person’s similarly expressed preference can be over-ruled if two doctors agree that the person’s life is at risk and appropriate emergency treatments  (ECT  is deemed  as one) can be implemented. The Mental Capacity Act gives people the right to refuse treatment, even if that treatment may save a person’s life. That’s unless that person has been given a psychiatric diagnosis. In the case of a mental health problem a range of treatments (including ECT) can potentially be given without their consent.

This issue has come to the fore because of a recent report which showed that of the 832 people who received ECT whilst detained, in 2012-13, 695 were found to lack the capacity to consent to that treatment.

Let’s return to the example of Lisa. HIV being an immunodeficiency virus, can often have no initial noticeable symptoms, lying dormant before gradually destroying the immune system. It can be up to 20 years before the signs of AIDS develop. The body becomes gradually unable to tolerate infection and with time, there are an increasing number of infections. Treatment can become more and more intense, as can its side effects.  In the later stages there is often decline in cognitive functioning and physical deterioration, leading to death.

When a person is diagnosed with a mental health problem, such as depression, the situation is different. A range of treatments may be offered, including talking therapy and medication. Time may be given for amelioration in the symptoms. However, if difficulties progressed and a person perhaps began to harm themselves or had the inclination and plan to kill themselves, they may be admitted to a mental health inpatient setting. Medication would often increase. If no improvement were noted and the person’s life perceived to be in danger, ECT may be considered.

The most important aspect of the contrast between these two scenarios is that, when someone is diagnosed with a specifically mental health related problem the Mental Health Act (2007) may be applied.  Under the Mental Health Act (MHA) consent to treatment for mental health problems is not necessarily required. While the courts have upheld the rights of a person detained under the MHA to refuse treatment for a tumour, the same person can be forced to have medication (by injection) for psychosis. This  has become the norm for mental health, in stark contrast to the application of the Mental Capacity Act to any other area of care. We have seen legal precedents for many areas of the MCA, including Deprivation of Liberty cases in mental health settings. However, we are not aware of a test case where someone has set excellent advanced directives , setting out their wishes upon deterioration, and stating that under no circumstances do they want to receive ECT.

The recent data on ECT was staggering in terms of how many people were deemed to lack capacity, when the considerations of the MHA come into play. There is work to be done here; we need to see how law courts test the issue. However, regardless of this, there is room for service improvement if the MCA can be introduced better into mental health systems. Could we perhaps move towards a system where we just use the MCA as a total replacement of the MHA?

We can certainly safely propose change in the implementation of the MCA in mental health settings without harm to services; in fact it would improve service provision! Claiming that patients do not have capacity can be easy. Staying true to the empowering ethos of the MCA is harder. It can feel harder still to allow a person to reject an intervention which the professional feels could save their life. Think back to the scenarios set out for Lisa at the beginning of this article and ask yourself why ECT is treated differently. We need transparency of process and more effort to go beyond minimum requirements, instead exemplifying best practice in the implementation of the MCA. As things stand, we often don’t know after the ECT, whether or not a person had the capacity to decide at some point during their involvement with services to give advanced directives in relation to the treatment. The MCA MUST be implemented better, and we SHOULD be incorporating advanced directives for ECT at a very early point, before the deterioration which can lead to ECT being considered. Failing to do so is failing the people we should be caring for.