In what will, I imagine, be a final post about the MENLOC evidence synthesis here is our accessible summary. This has been produced with a wide readership in mind, and for completeness includes links to the full Health and Social Care Delivery Research monograph reporting the project in full, and to our two derived papers. The first, in Palliative Medicine, reports on our research, policy and guidance synthesis and the second, in BMJ Open, reports on findings from our synthesis of case studies.

For a copy, click below:

With funding from the National Institute for Health Research comes the opportunity (and indeed, the requirement) to produce a detailed monograph reporting on all aspects of the project which has been supported. The Health and Social Care Delivery Research monograph arising from the MENLOC evidence synthesis, about which I have added various posts on this site, has now appeared. As with all NIHR project reports, this is free to download.

Here is the plain English summary:

In this study we brought together evidence from research, policies, guidance and case studies in the area of end-of-life care for people with severe mental illness. End-of-life care refers to the help given to people with life-threatening conditions in their expected last 12 months of life. Severe mental illness refers to a range of issues for which care is usually provided by specialist mental health services.

An advisory group, which included people who had experience of mental health and end-of-life care, helped us throughout our project. We searched research databases, journals and online sources. We assessed research articles for their quality and summarised their content. In one review we combined content from research with content from policy and guidance. In another review we combined the content of the case studies. We wrote synthesis statements summarising the research evidence, and assessed how much confidence decision-makers should have in these statements.

We included 104 documents overall. We synthesised research, policy and guidance under themes reflecting their content: the structure of mental health and end-of-life care services; professional practice; providing and receiving care; and living with severe mental illness. We synthesised case studies under themes relating to delays in diagnosis, making decisions, treatment futility, supporting people and the experience of care.

Our project has implications for care. The evidence suggests that partnerships should be built between mental health and end-of-life care staff, and that people should be supported to die where they choose. Care staff need education, support and supervision. A team approach is needed, including support for advocacy. Physical health care for people with severe mental illness needs to be improved so that life-threatening conditions can be recognised sooner.

Future research should involve people with severe mental illness at the end of life and their carers. Research is also needed to evaluate new ways of providing and organising care.

Here is our second published paper from the MENLOC project, which has synthesised what is known about end of life care for people with severe mental health problems. This article, led by Michael Coffey, reports on our theming of the evidence derived from previously-published case studies. The paper is in BMJ Open, is open access, and has this as its abstract:

Objectives: People with severe mental illness (SMI) have significant comorbidities and reduced life expectancy. The objective of the review reported in this paper was to synthesise material from case studies relating to the organisation, provision and receipt of care for people with SMI who have an end-of-life (EoL) diagnosis.
Design: Systematic review and thematic synthesis.
Data sources: MEDLINE, PsycINFO, EMBASE, HMIC, AMED, CINAHL, CENTRAL, ASSIA, DARE and Web of Science from inception to December 2019. Supplementary searching for additional material including grey literature along with 62 organisational websites.
Results: Of the 11 904 citations retrieved, 42 papers reporting 51 case studies were identified and are reported here. Twenty-five of the forty-two case study papers met seven, or more quality criteria, with eight meeting half or less. Attributes of case study subjects included that just over half were men, had a mean age of 55 years, psychotic illnesses dominated and the EoL condition was in most cases a cancer. Analysis generated themes as follows: diagnostic delay and overshadowing, decision capacity and dilemmas, medical futility, individuals and their networks, care provision.
Conclusions: In the absence of high-quality intervention studies, this evidence synthesis indicates that cross-disciplinary care is supported within the context of established therapeutic relationships. Attention to potential delay and diagnostic overshadowing is required in care provision. The values and preferences of individuals with severe mental illness experiencing an end-of-life condition should be recognised.