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Collaborative team working, training, and proactive physical health care are needed to ensure that people with severe mental illness receive appropriate end-of-life care. These are some of the recommendations from a new study which analysed previous research, case studies, policy and guidelines.

People with severe mental illness are entitled to the same quality and timeliness of care as everyone else. It is not always clear who should manage their end-of-life care. Mental health staff may not feel equipped to manage end-of-life care; end-of-life care specialists may not feel able to treat someone with severe mental illness. There is little research or policy in this area, and teams often lack guidance.

This study found that people with severe mental illness might not be accepted by hospices or care homes if staff do not feel equipped to manage them. This group of patients are rarely involved in advance care planning discussions during which they could explore their wishes. They are unlikely to receive the most appropriate end-of-life care.

The research team analysed research and case studies from around the world, and policy and guidance from the UK. The study highlights the challenges specific to this vulnerable group of people. It stresses the barriers they face to accessing good end-of-life care and makes recommendations for services.

What’s the issue?

People with severe mental illness have poorer physical health and shorter lives than the general population. They have the same right to access care as people with physical health difficulties and care should be of the same quality. This right, known as parity of esteem, was introduced in the Health and Social Care Act, 2012.

The premature death seen in people with severe mental illness has been described as a human rights disgrace. The needs of people with severe mental illness are either acknowledged poorly or not at all, which leads to the possibility of disadvantaged dying.

International guidelines emphasise the importance of high-quality palliative care for everyone at the end of life. This care aims are to make people comfortable rather than to cure their condition. People with severe mental illness who have 12 months or less to live should receive the same palliative care as everyone else.

Mental health services are separate from end-of-life services, and there is little overlap. This means that people with severe mental illness might fall through the gaps when it comes to their end-of-life care. Little work has been done to explore this area. Mental health staff might be reluctant to handle end-of-life care for their patients. Staff specialising in end-of-life care might find it difficult to talk with people with severe mental illness.

The research team set out to explore the experiences of people with serious mental illness who need end-of-life care.

What’s new?

This study explored the end-of-life care received by people with schizophrenia, bipolar disorder, major depressive disorder, or other severe mental illness. The group studied were all receiving specialist mental health care.

The research team analysed 34 research publications and 28 non-research documents (policy, guidelines and clinical case studies) from 10 countries. They worked with a stakeholder group including policy advisors, specialists in mental health and end-of-life care, and representatives of patients and the public.

There were four broad barriers to end-of-life care, each with a recommendation for services.

1. A multidisciplinary team, including a patient advocate

Barrier: There is often uncertainty about who is responsible for having discussions about advance care planning. These discussions are rarely held with people with severe mental illness. They may therefore miss the opportunity to state how and where they wish to be cared for at the end-of-life.

Recommendation: Multidisciplinary team working is essential. One staff member should take responsibility for coordinating all the care for a patient and linking up with appropriate services.

2. Reduced barriers between teams, and a flexible system

Barrier: Vulnerable groups struggle to access care. They include people with severe mental illness and also people who are homeless, substance users, prisoners, and people with learning disabilities. Furthermore, competitive funding can hinder partnerships between teams, for instance between primary care and social services.

Recommendation: Improved communication across teams would help. Staff should be encouraged to arrange meetings to discuss patients who need care from more than one team. Referrals need to contain all necessary information, including notes about mental health, as well as on physical health needs.

3. Education, support, and supervision for staff

Barrier: Some healthcare staff might hold prejudiced views about or stigmatise people with severe mental illness, in particular people who are homeless.

Recommendation: Further education about severe mental illness might help end-of-life specialists. More broadly, all healthcare staff would benefit from education about end-of-life care and severe mental illness. This could be included in pre-qualification training, since anyone working in healthcare may have to work with people with severe mental illness. Open lines of communication across teams would mean that extra can be provided when needed. Greater awareness of local support services would help.

4. Proactive physical healthcare to reduce delays in diagnoses

Barrier: Delayed diagnoses of life-threatening disease hinders timely treatment, and provision of end-of-life care. People with severe mental illness might not recognise their physical health needs and signs of deterioration. They are therefore often late to receive palliative care.

Recommendation: Early referral to end-of-life care can foster a trusting relationship with people with severe mental illness.

Why is this important?

People with severe mental illness should have the same quality end-of-life care as those without mental illness. This study highlights some of the key barriers this group of people face and offers recommendations.

The work emphasises the challenges specific to this vulnerable group, which includes people who are homeless. It shows the need for partnerships across healthcare teams so that people are not lost from the system, and their end-of-life care can begin at the appropriate time.

Healthcare professionals need more training, support, and supervision to better equip them to help people with severe mental illness. This might also reduce stigma and prejudice against people with severe mental illness.

Changes to the way teams work could include advocates for individual patients. A proactive approach to physical care is needed to reduce delays in diagnoses for people with severe mental illness.

What’s next?

Close partnerships and communication between mental health and end-of-life teams is needed. Improved education of staff before they qualify could help them manage the care of people with severe mental illness.

Several avenues for research could improve end-of-life care for people with severe mental illness. More research into specific approaches to providing collaborative care would help. The experiences of patients, carers and relatives need to be explored to find out what other barriers might exist.

Interventions such as advocacy and advance care planning need to be tested. The researchers say that new or enhanced roles could be developed for health and care workers. Models of integrated provision that span end-of-life and mental health systems are needed.

You may be interested to read

The paper this NIHR Alert is based on: Edwards D, and others. End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study). Palliative Medicine 2021;35:10

A review of published case studies from the same research team: Coffey M, and others. End-of-life care for people with severe mental illness: mixed methods systematic review and thematic synthesis of published case studies (the MENLOC study). BMJ Open 2022;12:e053223

The MENLOC evidence synthesis NIHR Journals Library report: Hannigan B, and others. End-of-life care for people with severe mental illness: the MENLOC evidence synthesis. Health and Social Care Delivery Research 2022;10:4

 

Funding: This study is funded by the NIHR Health Services and Delivery Research programme.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.


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Commentaries

Study author

We know that people with severe mental illness have worse physical health than the general population. People with severe mental illness are as entitled to have good quality and timely care as anyone else.We wanted to find out what their experiences are of end-of-life care, and the experiences of staff. What care do they experience when they receive a terminal diagnosis? Are they able to die where they choose? We wanted to explore how care is organised for this group of people.There is little research out there about end-of-life care in people with severe mental illness. We don’t even know how many people are affected in any given year. The issue falls between the well-established camps of severe mental illness and end-of-life care. We found a few small, isolated, end-of-life policies that talked about vulnerable groups (though not necessarily severe mental illness). We’re not aware of specific guidelines.There is a real danger of these people being passed between teams since neither is fully equipped to manage all their needs. As a result, the person’s care is not what it should be. We hope our work helps open the lines of communication between teams so that these people are given the care they deserve.Ben Hannigan, Professor of Mental Health Nursing, Cardiff University 

Marie Curie charity

Marie Curie’s estimates show that around 215,000 people die a year without having received any specialist palliative care. This paper highlights the particular inequalities in end of life care for people with severe mental health issues. It is saddening to read that stigma and discrimination remain major barriers to high quality palliative care for these people. The human impact of this is delayed diagnoses, and staff apprehension about talking about death and dying with them which will, no doubt, reduce their chances of having the quality of life they want before they die.The recommendations put forward in this review, around the need for multi-professional care teams, knowledgeable advocates and partnership working will be crucial in addressing the inequalities towards the end of life for people with severe mental health issues.Briony Hudson, Senior Research Manager, Knowledge Translation and Research Network, Marie Curie 

Member of the public

This paper should help raise awareness of the particular issues around end-of-life care for people with severe mental illness. There may be specific ethical issues around care for people with severe mental illness, such as severe depression, who could be feeling suicidal. I am a public contributor to mental health groups at NHS Trusts and some universities, and this paper will inform my comments to these groups.Good partnership working and training of staff are needed to optimise care for this client groupPublic Contributor, Stockport 

Clinician 

This mixed-method systematic paper raises important awareness of the inequity of care provided to people with severe mental illness who are dying from advanced disease. I have been interested in disadvantaged dying for a long time and I commend the authors for focusing on an issue that is rarely examined in palliative care literature. Mental health has long been the "Cinderella" of healthcare provision. This is not just.This review attempts to change that rhetoric. It critically examines available research and highlights the need for commissioners, health and social care professionals, services and the voluntary sector to work collaboratively to develop services that embrace the complex care needs of this population and patient group. Importantly these services must strive from the onset to be of high quality, to enhance the quality of life and lead to favourable experiences of care and outcomes.People living with severe mental illness, their families or carers and the public, will need to be involved in the design of services. Services need to be rigorously examined to ensure they are fit for purpose: the structure, systems and contexts in which care is to be provided need to be part of a 'whole systems strategic approach.Jonathan Koffman, Professor of Palliative Care, Wolfson Palliative Care Research Centre, Hull York Medical School 
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