and Political Science is a leading social care research group. Since its establishment in 1974 at the University of Kent, PSSRU has had considerable impact on national social care and mental health policy and practice in the UK and in a number of other countries. This report presents an independent review commissioned by Marie Curie. The views expressed in this publication are those of the authors and not necessarily those of the funder. was commissioned by Marie Curie to explore the evidence on equity in palliative care and to consider the economic implications of extending palliative care to those currently under-served. This report presents the findings from a wide-ranging and comprehensive review of research literature and nationally available data, and new multivariate analyses of data from the National Survey of Bereaved People in England, 2013. Palliative care aims to ensure the best possible quality of life for people in advanced illness and at end of life, and for their families, by actively managing pain and other symptoms and providing psychological, social and spiritual support. Palliative care may be delivered by specially trained, multidisciplinary specialists teams or by generalist providers such as GPs, district nurses, hospital doctors and nurses, allied health professionals, care home staff, social care staff, social workers, chaplains and others, who have not received accredited training in palliative care but routinely care for people with advanced illness or at end of life. Modern palliative care began with the hospice movement, although the initial focus on providing care to cancer patients and reliance on charitable funding meant that provision was thinly and inequitably spread. Despite steps to extend specialist palliative care, inequities in provision have persisted. The importance of addressing these inequities is recognised in national end of life care the need for palliative care is fast increasing as the population ages, particularly amongst those with non-cancer diagnoses, with the numbers of people aged 85 or over, for example, expected to more than double by 2037 in all four UK countries. We found important differences in data availability in each of the four UK countries. The National Survey of Bereaved People in England contributed a considerable amount of the evidence used in our review and is a rich source of representative data on access to, and experiences of, end of life and palliative care. However, no similar survey is undertaken in Wales, Northern Ireland or Scotland, leading to gaps …

Equity in the provision of palliative care in the UK: review of evidence

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Care of the Dying: A Pathway to Excellence

Report of the Lancet Commission on the Value of Death: bringing death back into life

Importance: Evidence supports palliative care effectiveness. Given workforce constraints and the costs of new services, payers and providers need help to prioritize their investments. They need to know which patients to target, which personnel to hire, and which services best improve outcomes. Objective: To inform how payers and providers should identify patients with “advanced illness” and the specific interventions they should implement, we reviewed the evidence to identify (1) individuals appropriate for palliative care and (2) elements of health service interventions (personnel involved, use of multidisciplinary teams, and settings of care) effective in achieving better outcomes for patients, caregivers, and the healthcare system. Evidence Review: Systematic searches of MEDLINE, EMBASE, PsycINFO, Web of Science, and Cochrane Database of Systematic Reviews databases (1/1/2001-1/8/2015). Results: Randomized controlled trials (124) met inclusion criteria. The majority of studies in cancer (49%, ...

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Populations and Interventions for Palliative and End-of-Life Care: A Systematic Review

Background: Residents living in long-term care facilities are a vulnerable population. For many residents, a nursing home is their place of death. Palliative care and end-of-life decisions are important components of their care provision. Aim: To study the views of cognitively able residents and relatives on advance care planning, end-of-life care, and decision-making in nursing homes. Design: A qualitative study with in-depth interviews with nursing home residents and focus group interviews with relatives of nursing home residents. Analysis is based on interpretive description. Setting/participants: In total, 43 informants from nine nursing homes participated in the study (25 nursing home residents and 18 relatives). All included residents had capacity to provide informed consent and lived in long-term care. Results: The main findings of this study were the differing views about decision-making and advance care planning of residents and relatives. Residents do trust relatives and staff to make important decisions for them. The relatives are in contrast insecure about the residents' wishes and experience decision-making as a burden. The majority of the residents had not participated in advance care planning. None of the residents stated challenges connected to end-of-life care or mentioned the wish for euthanasia. Conclusion: Although most residents seem to be satisfied with decision-making and end-of life care, there is a need for systematic advance care planning. Advance care planning could help to explore future wishes for care and ease decision-making for the relatives, physicians, and staff and should be offered to all cognitively able nursing homes residents.

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They know!-Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes

Objectives to identify the care currently provided to residents dying in U.K. nursing care homes. Method study participants were residents who had died within 38 nursing care homes in southeast England over a 3-year period. The nursing care homes had been recruited to take part in a cluster randomised controlled trial looking at different models of facilitation while implementing the Gold Standards Framework in Care Homes (GSFCH) programme. Two researchers examined the notes and daily records of all residents who died in each of these homes between the 1 June 2008 and the 31 May 2011. Results a total of 2,444 residents died during the 3-year period. Fifty-six percent of these residents died within a year of admission. The support from specialist healthcare services to residents during their last 6 months of life was variable. Conclusions nursing care homes have established links with some external healthcare providers. These links included the GP, palliative care nurses and physiotherapy. As dependency of resident increase with 56% residents dying within a year of admission these links need to be expanded. The provision of health care that meets the needs of future nursing care home residents needs to be 'proactively' obtained rather than left to chance.

The provision of care for residents dying in UK nursing care homes

Background:The provision of quality end-of-life care is increasingly on the national agenda in many countries. In the United Kingdom, the Gold Standards Framework for Care Homes programme has been promoted as a national framework for improving end-of-life care. While its implementation is recommended, there are no national guidelines for facilitators to follow to undertake this role.Aim:It was hypothesised that action learning alongside high facilitation when implementing the Gold Standards Framework for Care Homes programme will result in a reduced proportion of hospital deaths for residents and improvement in the care home staff ability to facilitate good end-of-life care.Design:A cluster randomised controlled trial where 24 nursing homes received high facilitation to enable them to implement the Gold Standards Framework for Care Homes programme. The managers of 12 nursing homes additionally took part in action learning sets. A third group (14 nursing homes) received the ‘standard’ Gold Standards Framew...

The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: a cluster randomised controlled trial.

Background: In the UK, implementation of the Gold Standards Framework in Care Homes (GSFCH) programme is being promoted to develop the quality of end-of-life care for frail older people living and dying in care homes. Advance care planning (ACP) discussions are an integral part of this. This study explored experiences of initiating and completing these discussions in homes undertaking the GSFCH. Methods: A qualitative descriptive study was carried out in three nursing care homes implementing the GSFCH programme. Following an ACP discussion, 28 semi-structured interviews were conducted with the resident, a family member, and the staff member who undertook the ACP. Content analysis was then conducted. Findings: Three main categories of findings emerged: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions. Staff understanding of ACP varied, affecting the depth of their discussions. Documentation was either a useful prompt or limited the discussion, blocking opportun...

Advance care planning in care homes: the experience of staff, residents, and family members.

Background: In the UK 15.8% of people aged 85 years and over live in a care home or long-stay hospital setting. With the projection of an ageing population it is realistic to expect that the number of people both living and dying in all care homes will increase. This article describes the implementation of an end-of-life care programme to empower staff to meet their resident's end-of-life care needs. Methods: To implement an end-of-life care programme, namely the ‘Steps to Success’ programme, in residential care homes. Measurable outcomes were collected through audit. Results: Over four years audit of all deceased residents' records in the participating homes was collected. This shows an increase of home deaths in 2011/12 to 2014/15 from 44% (n=8/18) within four residential care homes to 64% (n=74/115) in 23 residential care homes with corresponding increase in advance care plan discussions and completion of ‘do not attempt cardiopulmonary resuscitation’ forms. Conclusion: Achieving change is any organisa...

Developing, implementing and sustaining an end-of-life care programme in residential care homes.

People with dementia can have problems eating/feeding, which puts them at risk of malnutrition. There are various reasons why people with dementia find eating and/or feeding problematic, including difficulty co-ordinating movements in order to get food into their mouths, difficulty maintaining attention on eating, dysphagia, level of cognitive and physical impairment, resistance to care, agitation and psychological symptoms such as depression and apathy. It has been recognised that the environment is a crucial factor that can have an impact upon people with dementia in terms of improving their quality of life. This can also be true of the dining environment. It has been suggested that a dining environment that is welcoming, relaxing and comfortable has the potential to increase food intake and social interaction, which can make the eating/feeding experience more enjoyable and thereby minimise eating/feeding difficulties in people with dementia living in care homes. This article will consider the possible causes of eating/feeding difficulties in people with dementia living in care homes and the environmental factors that may enhance the dining experience. Conflicts of interest: none

Louisa Stone

Papers

The provision of care for residents dying in UK nursing care homes

The effect of using high facilitation when implementing the Gold Standards Framework in Care Homes programme: a cluster randomised controlled trial.

Advance care planning in care homes: the experience of staff, residents, and family members.

Developing, implementing and sustaining an end-of-life care programme in residential care homes.

Eating/Feeding Issues in Dementia: Improving the Dining Experience