Hospice network must change ‘death house’ perception, academics tells MPs

University of Liverpool  |June 2018 | Hospice network must change ‘death house’ perception, academics tells MPs

Marketing experts from the University of Liverpool’s Management School have studied hospices and palliative care for the last four years. Academics Dr Philippa Hunter-Jones and Dr Lynn Sudbury-Riley argue that their research shows  hospices must market themselves and their services more effectively in order to improve the experience of end of life care for both patients and families.

They cite how their data shows the general public have a lack of knowledge about the services available to the general public and  how to access these services. The pair’s findings also highlight misconceptions about the term palliative, and a lack of emphasis on the importance of care at this life stage for the families of patients and the patients themselves (Source: University of Liverpool)

The academics were recently invited to Westminster to share their research with the All-party Parliamentary Group (APPG) Hospice and Palliative Care Inquiry into Improving Access to Hospice and Palliative Care.

The full news story is available from the University of Liverpool 


Unequal access to hospice care across England

Patients with incurable illnesses, among them dementia, liver failure  are not receiving hospice care soon enough finds a Leeds University study. The NIHR funded study, which is also the first of its kind to look at this issue is (via Leeds University

The researchers examined data from about one third of the UK’s hospices, including patient records of more than 42,000 people who died in 2015 with a progressive, advanced disease, after receiving community or inpatient palliative care at a hospice included in the study.


Among their key findings are that patients with cancer were admitted for hospice care 53 days before dying, for patients without cancer this was later with a referral 27 days before death.  The team also identified variation across the coutnry with patients in the North admitted later than those in the South, Midlands and East of England.


Lead author of the study Dr Matthew Allsop said, “There are misconceptions held by the public and healthcare professionals about what palliative care is, who it is for, and when people can benefit from access to it.

“Palliative care is for any person diagnosed with a terminal illness, not just those with cancer. It aims to help patients and their families achieve the best quality of life through treating or managing physical symptoms, and helping with any psychological, social or spiritual needs (Source: Univeristy of Leeds).

The research has now been published in Palliative Medicine, the article can be read in full via Sage

Related: NIHR NIHR research highlights disparities in end-of-life hospice care

End of life care

End of life care in England: a briefing paper | IPPR

Image source: http://www.ippr.org

This paper provides a brief summary of issues around end of life care including the impact of location on the quality and cost of care; analyses data on the current location and cost of end of life care in England; and appraises the current policy agenda in this area, suggesting key areas where improvements should be made.

Full briefing: End of life care in England: a briefing paper


‘Fighting talk’ can leave cancer patients unable to talk about death and dying

Macmillan Cancer Support reports that a need for patients with a diagnosis of cancer to  ‘fight’ and remain positive could be having a negative effect on people living with the disease. Over 75 per cent of people with cancer have thought about the possibility that they might die from the disease, however the report identifies a number of barriers to them being able to discuss this honestly. 

According to health and social care professionals, one of the largest obstacles is within the pressure to stay positive and support people to fight cancer, even in the face of a terminal diagnosis.

Macmillan Cancer Support indicates that while it is a commonly held belief that describing people with cancer as ‘fighters’, keeps a person’s spirits high and instils in them a sense that the professionals supporting them are helping them to ‘fight the battle’.  While some may find this language helpful, Missed Opportunities highlights the challenging contradiction of this fighting talk for people at the end of their lives.

Image source: macmillan.org.uk

Key findings from the report include:

  • The perceived need to ‘fight’ cancer often means people with a terminal diagnosis aren’t getting the right support to plan for end of life
  • More than one in four people with cancer (28%) have difficulty talking honestly about their feelings around cancer
  • Gulf in communication means thousands of people with cancer unnecessarily die in hospital against their wishes
  • Advance Care Planning, discussing end of life wishes, can significantly improve end of life experiences

(Source: Macmillan Cancer Support)

In the media:

BBC News Cancer patients urged to discuss ‘end of life’ plans

What is the cost of palliative care in the UK?

Gardiner C, Ryan T, Gott M | What is the cost of palliative care in the UK? A systematic review | BMJ Supportive & Palliative Care | published Online First: 13 April 2018

Objectives Little is known about the cost of a palliative care approach in the UK, and there is an absence of robust activity and unit cost data. The aim of this study was to review evidence on the costs of specialist and generalist palliative care in the UK, and to explore different approaches used for capturing activity and unit cost data.

Methods A systematic review with narrative synthesis. Four electronic databases were searched for empirical literature on the costs of a palliative care approach in the UK, and a narrative method was used to synthesise the data.

Results Ten papers met our inclusion criteria. The studies displayed significant variation in their estimates of the cost of palliative care, therefore it was not possible to present an accurate aggregate cost of palliative care in the UK. The majority of studies explored costs from a National Health Service perspective and only two studies included informal care costs. Approaches to estimating activity and costs varied. Particular challenges were noted with capturing activity and cost data for hospice and informal care.

Conclusion The data are limited, and the heterogeneity is such that it is not possible to provide an aggregate cost of palliative care in the UK. It is notable that the costs of hospice care and informal care are often neglected in economic studies. Further work is needed to address methodological and practical challenges in order to gain a more complete understanding of the costs of palliative care.


Symptom management, nutrition and hydration at end-of-life

Study highlights the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population | BMC Paliiative Care

Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.

The PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach.

Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.

This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.

Full reference: Baillie, J. et al. | Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions | BMC Palliative Care | published online 16 April 2018


Advance Care Planning for people with dementia

My future wishes: Advance Care Planning (ACP) for people with dementia in all settings | NHS England | Alzheimer’s Society | tide

future wishes
Image source: http://www.england.nhs.uk

The guide provides signposting, information and support for colleagues in health, social and community care settings, around advance care planning for people living with  dementia. It identifies key actions from the point of an initial diagnosis of dementia through to the advanced condition, in order to highlight and prompt best practice irrespective of care setting.

It also considers situations where it has not been possible to initiate an ACP / future wishes conversation early and provides some tips on how to manage this.

The aim of this resource is to help practitioners, providers and health and social care commissioners:

  • create opportunities for people living with dementia to develop an ACP through
    initiating and / or opening up conversations;
  • ensure advance care planning is fully embedded in wider inclusive, personalised care and support planning for dementia;
  • ensure people living with dementia have the same equal opportunities as those
    diagnosed with other life limiting conditions / diseases, in terms of accessing palliative care services / support.

Full document: My future wishes: Advance Care Planning (ACP) for people with dementia in all settings