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Call to debate end of life care for people with dementia

NHS England’s National Clinical Directors for Dementia and End of Life Care, together with Clinical Fellow Elena Baker Glenn, examine the stark findings of a recent national end of life care intelligence network briefing on dementia:

Death and dying are emotive subjects at the best of times and there has recently been interest and publicity about end of life care.

This has been brought into sharp relief by the discussions around the Liverpool Care Pathway and the crucial role of advance care planning.

NHS England have a specific programme of work on end of life care which aims to improve care and support for the individual – and those important to them) – to transform end of life care in the community and hospital, and support commissioning of high quality services for all. Together with our partners across the system, we are driving forward the Ambitions for Palliative and End of Life Care as a national framework for local action.

End of life care in dementia attracts particular comment for two reasons. Many people do not perceive dementia as a terminal condition, and yet the life expectancy for someone with dementia in a care home is the same as for someone with metastatic breast cancer.

Firstly, we know that people with dementia do poorly in terms of end of life care but have many of the same symptoms in their last days of life. A particular issue is people in care homes – the majority of whom have dementia – being admitted to hospital for the last few hours or days of their life.

The second reason is mental capacity, in that there is a fear that people in the later stages of dementia lack capacity and so there is reluctance in staff to be more proactive.   Yet it is precisely because people with dementia will ultimately lose capacity that the opportunity to offer advance care planning at an earlier stage must not be lost.  Dementia is now considered the leading cause of death in England and Wales.

The recent national end of life care intelligence network briefing on dementia showed very clearly that we can improve on how people with dementia are cared for at end of life.

The findings were:

  • The mortality rate for deaths with a mention of dementia has increased significantly from 2001 to 2014
  • Data suggests that people who live in more deprived areas die younger with dementia; the relationship is small but significant
  • More than half of dementia deaths for people aged 65+ occurred in care homes, compared with a quarter of the general population
  • More than a third of dementia deaths also had a record of respiratory disease and more than a third had a record of circulatory diseases
  • Recommendations include focusing on dementia-specific palliative services, improving the adoption and quality of advanced care planning and advocating GP led holistic reviews for more co-ordinated care.

In addition, the CQC report on inequalities published in May 2016, ‘A Different Ending’, illustrated a number of different areas where patients with dementia did not receive the same care as some other groups at the end of their life.

We feel that there are four areas which could be of particular interest for further discussion.  Firstly, the Deprivation of Liberty Safeguards (DoLS) legislation has been discussed in the House of Lords and dropping the mandatory requirement for people in care homes on DOLS to be subject to an inquest has been suggested.  We feel that a fuller discussion about the implications of this should be more widely disseminated. A draft Bill and final report with recommendations from the Law Commission on Mental Capacity and DoLS is due to be published in March 2017.

Secondly, whilst there are times when admission to hospital is necessary for people with dementia, there are also many occasions when it is not. In the latter situation, admission often occurs because of the absence of an advance care plan or advance care directive.  We are interested in exploring the possibility that advance care planning discussions and documentation should be offered, as a matter of routine, for all residents in care homes.

Thirdly, we have recently become aware of specific issues in end of life care for people from different faiths, where particular beliefs may guide individual decisions about health care and need to be understood and respected. For example, Jewish Law (Halacha) posits particular requirements to be applied in end of life care.

Finally, there are challenges in recognising and managing certain symptoms in dementia at the end of life, such as pain, agitation and distress.

We have discussed these issues with a number of colleagues and feel there would be an opportunity to have an event to debate them in an open and transparent forum.

We would be grateful for any thoughts and comments and any ideas that such a symposium or discussion could bring.

For further information, go to:

Professor Alistair Burns

Alistair Burns is Professor of Old Age Psychiatry at The University of Manchester and an Honorary Consultant Old Age Psychiatrist in the Greater Manchester Mental Health NHS Foundation Trust. He is the National Clinical Director for Dementia and Older People’s Mental Health at NHS England and NHS Improvement.

He graduated in medicine from Glasgow University in 1980, training in psychiatry at the Maudsley Hospital and Institute of Psychiatry in London. He became the Foundation Chair of Old Age Psychiatry in The University of Manchester in 1992, where he has variously been Head of the Division of Psychiatry and a Vice Dean in the Faculty of Medical and Human Sciences, with responsibility for liaison within the NHS. He set up the Memory Clinic in Manchester and helped establish the old age liaison psychiatry service at Wythenshawe Hospital. He is a Past President of the International Psychogeriatric Association.

He was Editor of the International Journal of Geriatric Psychiatry for twenty years, (retiring in 2017) and is on the Editorial Boards of the British Journal of Psychiatry and International Psychogeriatrics. His research and clinical interests are in mental health problems of older people, particularly dementia and Alzheimer’s disease. He has published over 300 papers and 25 books.

He was made an honorary fellow of the Royal College of Psychiatrists in 2016, received the lifetime achievement award from their old age Faculty in 2015 and was awarded the CBE in 2016 for contributions to health and social care, in particular dementia.

Professor Bee Wee

Professor Bee Wee CBE, National Clinical Director for End of Life Care, NHS England and NHS Improvement.

Bee is a Consultant in Palliative Medicine at Sobell House and Katharine House Hospice, Oxford University Hospitals NHS Foundation Trust and Associate Professor at University of Oxford, where she is also a Fellow of Harris Manchester College.

Originally from Malaysia, Bee qualified from Trinity College Dublin in 1988, trained in general practice in Dublin, then moved into palliative medicine in Ireland, Hong Kong and the UK. She was Consultant/Senior Lecturer at Countess Mountbatten House, Southampton (1995-2003), where she became Deputy Director of Education, School of Medicine at the University. She was President of the Association for Palliative Medicine of Great Britain and Ireland (2010-13), National Clinical Lead for e-ELCA, a DH-commissioned e-learning programme for end of life care, now hosted by Health Education England, and Chair of the Topic Expert Group for the NICE Quality Standard for End of Life Care (2011). She enjoys cooking and allotment gardening for relaxation.

Bee is Honorary Professor at Sichuan University, China, and holds an Honorary Doctorate of Science at Oxford Brookes University. As NCD, she led the Leadership Alliance for the Care of Dying People and is co-chair of the National Partnership for Palliative and End of Life Care which was responsible for publishing the ‘Ambitions for Palliative and End of Life Care: a national framework for local action’ in 2015. She was awarded a CBE in the Queen’s New Year’s Honours list in 2020 for services to palliative and end of life care.

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