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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  1. Doreen Byhurst says:

    The lack of continuity of Carers to clients should be debated. Dementia sufferers who live on their own need this continuity and should not see different carers all the time. I take care of my husband who has adult onset hydrocephalus and now bedbound and has 4 visits from two carers each day and we very often do not know who is going to arrive. The Care Agency says its not good for clients to have the same Carers as it makes for familiarity but the Continuing Care Team says its necessary for continuity of Carers for dementia sufferers I believe it essential that this is debated for the good of the clients. It is also very stressful for the main carer when they continually have staff who have only had their training and shadowing a few days previously arriving to take care of their end of life loved one.

  2. Lynne says:

    Is the Dols pathway the same or part of the Liverpool pathway. My Father is dying prematurely in a care home on a deprevation of liberty pathway and my gut feeling is that he is being killed off and I am seeking legal advice. Ever since he was placed in care december 2016 he has deteriorated quickly regarding his physical, and mental state. These people say he is eating when in fact he is not because they are not feeding him or hydrating him, he is a skeleton with skin, suffering with , anxiety, depression and hallusinations due to the medication, or he is sedated to the point of unconciousness. They have kept him bed riddon since May 2017 and now he has fluid build up with lots of phlem and constant coughing. This is not dignified and not right. I am not proud to be British atall.

  3. Jane Chatterjee says:

    I think a challenge to Advance Care Planning for people with dementia is that discussions need to be made early in the dementia trajectory and they are less able to review their decisions as they progress in their dementia.

    Regarding the assessment and management of pain and distress I think a major concern is that healthcare professionals may not always recognise behaviours of distress in individuals in the first instance.

    It would be valuable to discuss issues and share experiences with others.

  4. T. Wormley says:

    A debate about end of life care for people with dementia is long overdue.My mother died recently from dementia. She died at home, in pain and highly agitated. Palliative nursing teams lacked the relevant experience to care properly for her and administer pain relief appropriately. A request to the local hospice was denied as the staff did not have the necessary experience to care for her, yet as the above article points out, death from end stage dementia is no different to that of a death from some forms of cancer.

    The fact that many hospices do not accept dementia patients is in itself worthy of debate. There are so many issues wrapped up in this subject that need to be addressed. I wholeheartedly welcome Professor Burn’s call to a national debate on end of life care and care plans for people with dementia.

  5. Beth Goss-Hill says:

    Culturally, there is a need for improved awareness that dementia is a terminal illness, requiring palliative care from diagnosis to enable effective end of life care for people living with dementia.

    It would appear that people with dementia receive less optimum palliative care than those with a malignant disease due to;

    a lack of early diagnosis, limiting a timely referral into support services, leading to a poor opportunity to make advanced decisions and plan care whist mental capacity remains intact
    a lack of acceptance that dementia is a terminal illness, poor education and awareness from both a lay and professional perspective
    difficulty with prognostication & a lack of evidence based prognostic indicators

    medicalization with unnecessary on going treatment

    unpredictable disease progression

    lengthy palliation = costly compared to malignant diseases with short predictable duration

  6. Anonymous says:

    Health care professionals and society has moved away from the notion that dying is a normal process. Health services feel the need to medically treat patients that are in the end stages of life. If they are unfortunate to be admitted to an acute hospital the patients will be exposed to an array of unnecessary investigation and moved from A&E, AMU, then a ward etc. Very distressing for someone with Dementia
    Honest discussion should be held with the patients and families about the best option for care when a patient is near the end of life. Plans should be put in place that informs all the individuals that are involved with the patient. Families require additional support when there is a sudden change in a patient’s condition. Often an admission to hospital is a panic reaction because there are not adequate services that can respond at short notice.
    End of life conversations take place for some cancer patients however this is not the case for other life limiting long term conditions

  7. Tim Sanders says:

    I think the focus on care homes – that ACP should be routine with people and / or families – is a good idea. It’s likely to have a very positive impact on people having a ‘good death’ in the right place, and save really unhelpful and expensive hospital admissions.

    We shouldn’t give up on early post-diagnosis opportunities to discuss wishes for the future, but the fact is that for many people, a strategy for living well is to not look too far ahead, and to live one day at a time. Not ideal for ACP but fair enough. So I think the care homes focus, whilst relatively later in the dementia journey, is likely to have the best results.

    Regarding symptom detection and management, we have in Leeds a nurse and published author on pain and dementia, Jane Chatterjee, at St Gemmas Hospice. I think a symposium which gathers and distils our best ‘practice wisdom’ would be an excellent thing. It would be one for clinical colleagues to share honest lessons from experience.

  8. Jeremy Seymour says:

    When is it End of Life?
    >70% of people are now receiving a diagnosis of dementia, a life-changing diagnosis, often at a relatively early stage of the illness when they are capacitous.This is an opportunity to ask people what they wish for their end-of-life care and to document this. I hope NHS England will fund some research in to how this documentation can best be approached in an acceptable way, and subsequent outcome.

  9. tjake says:

    People should have a right to die if they choose. They should have the rights to their body; pregnancy. If someone leaves instruction to terminate their lives if incapable, why do others want to interfere? Why do some people like to see other people suffer?

  10. Justus Josephs says:

    Advanced cdecisions and advanced end of life care plans need to be promoted amongst all individuals. It is a cultural shift that needs to occur and be in place similar to will writing. Maybe it could be introduced to people when they are writing a will. It also needs more TV and newsmedia promotion. It is too late to do this when people get dementia

    • NHS England says:

      Thank you for you comment. We agree that a culture shift in society is needed to encourage people to have discussions about advance care planning early. Greater media promotion may help to raise awareness; combining advance care planning with other processes, such as will writing, is an interesting idea and may be a step forward in the right direction. Better guidance on how to prepare an advance care plan is also needed

      Kind Regards
      NHS England