NICE impact end of life care for adults

NICE| October 2020| NICE impact end of life care for adults

Many people are unable to access all the support they need at the end of their life.

NICE impact end of life care for adults, is a new report from NICE which highlights progress made by the health and care system in implementing NICE guidance on end of life care. This publication highlights how the quality of care can be variable depending on location, social and cultural background, and diagnosis.

Many people are unable to access support at the end of life. We need to understand and strengthen the impact of NICE guidance on people’s experience of end of life care

.Julie Pearce (chief nurse and executive director of caring services) and Dr Sarah Holmes (medical director, service transformation and innovation).

The report makes some of the following key points:

Care of people approaching the end of life

  • Care at the end of life should be identified in a timely way.  If identification is effective and timely, this can allow people, and those important to them, to make decisions about their care. 
  • NICE’s quality standard on end of life care for adults says that the opportunity to develop a personalised care plan should be part of a comprehensive holistic assessment for people approaching the end of life.
  •  90% of people did not have a care plan in place on arrival at their final hospital admission
  • People with conditions such as dementia, which are not always recognised as life-limiting, often face an additional barrier to dying in their preferred place. This is because certain care settings, for example hospices, are not always offered as an option for them.
  • Healthcare professionals did not always consider the communication needs of people with dementia and sometimes assumed that the person with dementia lacked capacity

NICE impact end of life care for adults [news release]

Summary of the report available from NICE

NICE impact end of life care for adults (PDF) [report]

COVID-19: End of life care and dementia

This brief guidance was developed by Alistair Burns, National Clinical Director for Dementia at NHS England/Improvement, and has been incorporated into NHS England publications | via British Geriatrics Society

The majority of people with dementia (which is the leading cause of death in England and Wales) are aged over 70, have other long-term conditions and are frail, putting them into particularly vulnerable groups for developing complications if they are infected with COVID-19.

There are an estimated 675,000 people with dementia in England who are supported by a similar number of carers, most of whom are older people themselves. A quarter of people in acute hospitals and three quarters of residents of care homes have dementia.

This brief guidance may be useful to clinicians and planners when considering end of life care matters in people with dementia.

COVID-19: End of life care and dementia: Good practice guide.

Hospitalization at the end of life among nursing home residents with dementia

Falk Hoffmann, Anke Strautmann & Katharina Allers | Hospitalization at the end of life among nursing home residents with dementia: a systematic review | BMC Palliative Care | volume 18, Article number: 77 (2019)


Half of nursing home residents (NHR) suffer from dementia. End-of-life hospitalizations are often burdensome in residents with dementia. A systematic review was conducted to study the occurrence of hospitalizations at the end of life in NHR with dementia and to compare these figures to NHR without dementia.


A systematic literature search in MEDLINE, CINAHL and Scopus was conducted in May 2018. Studies were included if they reported proportions of in-hospital deaths or hospitalizations of NHR with dementia in the last month of life. Two authors independently selected studies, extracted data, and assessed quality of studies.


Nine hundred forty-five citations were retrieved; 13 studies were included. Overall, 7 studies reported data on in-hospital death with proportions ranging between 0% in Canada and 53.3% in the UK. Studies reporting on the last 30 days of life (n = 8) varied between 8.0% in the Netherlands and 51.3% in Germany. Two studies each assessed the influence of age and sex. There seem to be fewer end-of-life hospitalizations in older age groups. The influence of sex is inconclusive. All but one study found that at the end of life residents with dementia were hospitalized less often than those without (n = 6).


We found large variations in end-of-life hospitalizations of NHR with dementia, probably being explained by differences between countries. The influence of sex and age might differ when compared to residents without dementia. More studies should compare NHR with dementia to those without and assess the influence of sex and age.

Full document available from BMC Palliative Care

Moments of clarity in dementia patients at end of life

Unexpected cognitive lucidity and communication in patients with severe dementias, especially around the time of death, have been observed and reported anecdotally. This paper explores this phenomenon, which experts refer to as terminal or paradoxical lucidity | Alzheimer’s & Dementia | via ScienceDaily


The paper describes earlier work documenting case studies of individuals with advanced dementia, including Alzheimer’s disease, appearing to be able to communicate and recall in a seemingly normal fashion at the end of life, to the astonishment of their caregivers.

The authors acknowledge that studying paradoxical lucidity is challenging, given the fleeting nature of the event. Case studies report episodes lasting from mere seconds to at most several days for a small minority of cases. Thepaper also outlines important ethical implications of this work, including the ability of vulnerable patients to participate in research and how the observation of paradoxical lucidity might change the way caregivers interact with people with dementia.

The researchers hope their paper will help raise awareness within the scientific community to advance paradoxical lucidity research, and help validate the experiences of a multitude of caregivers.

Full paper: George A. Mashour et al. | Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias | Alzheimer’s & Dementia | 2019

See also: Moments of clarity in dementia patients at end of life: Glimmers of hope? | ScienceDaily

Quality indicators to assess optimal palliative care for older people with dementia

This paper provides a summary of the quality indicators available to assess optimal palliative care in older people with dementia, and identifies the major gaps related to recommendations for which indicators remain to be developed | Palliative Medicine


A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation.

To identify and critically evaluate quality indicators for end-of-life care in dementia.

We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines.

We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.

Full document: Amador, S. et al. | A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia | Palliative Medicine | 2019 Vol.33(4) | p415–429.

Factors influencing palliative care in advanced dementia: a systematic review

Mataqi M, Aslanpour Z | Factors influencing palliative care in advanced dementia: a systematic review | BMJ Supportive & Palliative Care | Published Online First: 03 April 2019

Background: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia can benefit from palliative care (PC) provided during the end-of-life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs.

Aim: To investigate the factors influencing provision of PC services for people with advanced dementia.

Methods: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINAHL and Scopus from 2008 to 2018 were searched. Narrative synthesis and content analysis were used to analyse and synthesise the data.

Key findings: In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients-related barriers and facilitators in provision of PC for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to PC in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of coordination across care settings, difficulty communicating with the patient and the lack of advance care planning.

Conclusions: Even though the provision of PC was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective PC in this population.

Not enough specialist support for people with dementia

Despite having complex needs, most of the healthcare received by people in the later stages of dementia is provided by GPs or emergency services, with little support from specialist healthcare professionals. | via Marie Curie

Researchers, from the Marie Curie Palliative Care Research Department at University College London, found that GPs were the main providers of medical care, with 96% of people with advanced dementia  seeing a GP in their last month of life. Paramedics also played a major role in assessment and healthcare towards the end of life, suggesting a reactive rather than planned response to patients’ needs – nearly one in five (19%) were seen by a paramedic in the month prior to their death.

Only 1% of people with advanced dementia were seen during the follow up period of the study by a geriatrician or an older persons’ psychiatrist.

Based on the findings, the researchers say that healthcare services are not currently tailored to the complex needs and symptoms of people with advanced dementia. Given that dementia is now the leading cause of death, they say there is urgent need to ensure an adequate standard of comfort and quality of life for patients.

Full story at Marie Curie


Managing uncertainty in care for people with dementia at the end of life

This study developed a toolkit of heuristics to aid practitioners making difficult decisions when caring for someone with dementia at the end of life|BMJ Supportive & Palliative Care.
Image source: Charles Hamm – Wikipedia // CC BY 3.0

Introduction: The end of life for someone with dementia can present several challenges for practitioners. Challenges may be eased with the use of heuristics (rules-of-thumb). For example, FAST is used in stroke: Facial-weakness, Arm-weakness, Slurred-speech, Time to call 999.

Methods: A co-design approach with three phases:

  1.  Focus groups and semi-structured interviews with family carers and practitioners, to identify key decisions and how these should be made. Results were presented to a co-design group consisting of health and care practitioners, and family carers tasked with developing a toolkit of heuristics, through workshops.
  2. Testing the heuristics in practice for six-months in five clinical and care settings.
  3. Evaluation of heuristics through interviews and questionnaires at three and six-months.

Results: Four sets of heuristics were developed, covering; eating/swallowing difficulties, agitation/restlessness, reviewing treatment, and routine care. The heuristics are arranged as flowcharts. Eating/swallowing difficulties have two rules; ensuring eating/swallowing difficulties do not come as a surprise and reflection about ‘comfort-feeding’ only. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and caregivers’ health/wellbeing. Reviewing treatment/interventions prompts practitioners to consider the benefits to quality-of-life and comfort. Finally, routine care, such as bathing, prompts practitioners to ensure care interventions improve or do not harm quality-of-life.

Conclusions: Practitioners liked the simplicity of the heuristics, making their implicit knowledge explicit, enhancing their confidence in making decisions at the end of life.

Full reference: Davies, N. et al. (2017) 14 Managing uncertainty in care for people with dementia at the end of life: the use of heuristics. BMJ Supportive & Palliative Care. Vol. 07 (Issue 03) p. A352.

Dementia Caregiver Grief and Bereavement

Alzheimer’s disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings | Western Journal of Nursing Research


The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer’s disease and related dementias caregivers. This review identified five critical gaps in the existing evidence:

(a) a lack of ethnic and gender diversity among caregivers studied,

(b) limited use of valid instruments to study dementia caregiver grief and bereavement,

(c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care,

(d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement

(e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.

Full reference: Arruda, E.H. et al. (2017) Dementia Caregiver Grief and Bereavement: An Integrative Review. Western Journal of Nursing Research. Vol.  39 (no. 6) pp. 825-851

Nurses’ experiences of pain management for people with advanced dementia approaching the end of life

Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care | Journal of Clinical Nursing


Aims and objectives: To explore hospice, acute care and nursing home nurses’ experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.


Conclusions: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

Relevance to clinical practice: Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology.

Full reference: De Witt Jansen, B. et al. Nurses’ experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study. Journal of Clinical Nursing. 26,(9-10) pp. 1234–1244