Research

Empowerment Matters works with partners to undertake research which will further understanding of the Mental Capacity Act (2005) and how it applies in practice.

Findings from any research we’ve done will be disseminated to professionals who have an interest in the MCA and will be published in relevant journals.

Current Research

Working with the ‘Coma and Disorders of Consciousness’ Research Centre (CDOC)

In April 2016 Jakki was seconded to Cardiff University part time for 6 months to help with research on advocacy & best interests decisions for those in a permanent vegetative or minimally conscious state (also known as Prolonged Disorders of Consciousness).

We first encountered the work of CDOC when team members came for training in understanding non instructed advocacy and wanted to learn more about how the Mental Capacity Act 2005 could be delivered on in practice.

Since then research by CDoC has had a huge impact on the field – especially for ‘coma’ patients and their families – and we have often worked in parallel with colleagues at the research centre in producing evidence for official enquiries and impacting on guidelines and policy. We are delighted by this opportunity to now take forward the impact of CDoC’s research throughout this secondment.

The research will aim to report on:

Detail of activities and the outcome
Reviewing how institutions/professionals have embedded learning into their future practice
Summarising her own intervention as advocate and implications for policy
Reflecting on the role of Independent Mental Capacity Advocates (IMCAs) e.g. where current legislation says such advocates are not available if there are family members ‘appropriate to consult’.

The research at CDoC has shown that:

Patients in permanent vegetative and minimally conscious states are ‘lost’ in the system – there is no register of such patients, they are dispersed into long term care homes with little specialist expertise about the diagnosis/prognosis/law.
Patients are hidden by a ‘wall of inertia’ – with no one sure who is/should be taking decisions or even a (false) sense that no decision needs to be made (unless something changes, such as a feeding tube becoming dislodged).

Families feel abandoned and left ‘in limbo’, staff suffer ‘moral distress’ and patients ‘best interests’ are not being addressed e.g. patients are having on-going artificial nutrition and hydration (because withdrawal needs a complicated court application) – but are not being given antibiotics – so they have repeated bouts of untreated pneumonia over several years in an effort to ‘allow death’ without having to go to court.

Applications to court (in the small minority of cases where they are made) are experienced as hard to understand, intimidating and slow (with a knock on effect on others considering such applications).

CDoC publications in journals such as Sociology of Health and Illness and ‘Journal of Medical Ethics’ Journal of Medical Ethics highlighted these problems and suggested possible solutions.

To keep up to date with news about Jenny and Celia’s range of work in this area follow them on twitter @JennyKitzinger and @KitzingerCelia

IMCAs and Critical Care Units

Empowerment Matters worked with Cambridge University Hospitals NHS Foundation Trust to conduct a small study into the involvement and contribution of Independent Mental Capacity Advocates (IMCAs) in critical care units.

We wanted to find out if it would be beneficial and feasible to involve IMCA even when families are available to be consulted about decisions by holding regular ‘IMCA’ clinics on critical care units.  This service could be available to families and clinical staff.

The study is in 2 parts.  Part 1 -some IMCA providers have been invited to take part in interviews asking about their work in critical care units. Part 2 – a survey asking about IMCA work in critical care situations is being sent to all IMCA providers.

The information that we get from the study may benefit patients and their families who are admitted to the Intensive Care Unit in the future.  The study will also raise awareness of the role of the IMCA in ICUs and provide an opportunity for greater dialogue between the services. This research will be published shortly.