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Background: In many countries, achieving a home death represents a successful outcome from both a patient welfare and commissioning viewpoint. Significant variation exists in the proportion of home deaths achieved internationally, with many countries unable to meet the wishes of a large number of patients. This review builds on previous literature investigating factors influencing home death, synthesising qualitative research to supplement evidence that quantitative research in this field may have been unable to reach. Aim: To identify and understand the barriers and facilitators influencing death at home. Design: Meta-ethnography. Data sources: The review adhered to the PRISMA guidelines. A systematic literature search was conducted using five databases: PubMed, EMBASE, Ovid, CINAHL and PsycINFO. Databases were searched from 2006 to 2016. Empirical, UK-based qualitative studies were included for analysis. Results: A total of 38 articles were included for analysis. Seven overarching barriers were identified: lack of knowledge, skills and support among informal carers and healthcare professionals; informal carer and family burden; recognising death; inadequacy of processes such as advance care planning and discharge; as well as inherent patient difficulties, either due to the condition or social circumstances. Four overarching facilitators were observed: support for patients and healthcare professionals, skilled staff, coordination and effective communication. Conclusion: Future policies and clinical practice should develop measures to empower informal carers as well as emphasise earlier commencement of advance care planning. Best practice discharge should be recommended in addition to addressing remaining inequity to enable non-cancer patients greater access to palliative care services. [ABSTRACT FROM AUTHOR]

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the ‘good death’: free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the ‘good death’ as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care. [ABSTRACT FROM AUTHOR]

In economically developed countries there is a rapidly increasing number of older people living and dying in care homes. The relative isolation of nursing care homes from the development of palliative care, the poor retention and recruitment of staff, and the lack of medical cover, hinder the provision of quality end-of-life care. End-of-life care strategies internationally highlight the benefit of using tools to help improve end-of-life care in care homes. All seven private nursing care homes within one district in Scotland undertook to implement, as a package, two end-of-life care tools, namely, the Gold Standards Framework for Care Homes (GSFCH) and an adapted Liverpool Care Pathway for Care Homes (LCP). A model of high facilitation, visiting the homes every 10—14 days with significant in-house staff training, was used to implement the 18-month programme. The notes of 228 residents who had died prior to and during the project were examined, alongside a staff audit looking at the effect that the project had on practice. A nurse researcher undertook qualitative interviews of bereaved relatives, pre-/post-implementation. This paper reports the results of an in-depth evaluation of professional practices and residents outcomes. There was a highly statistically significant increase in use of Do Not Attempt Resuscitation (DNAR) documentation, advance care planning and use of the LCP. An apparent reduction in unnecessary hospital admissions and a reduction in hospital deaths from 15% deaths pre-study to 8% deaths post-study were also found. Further work is needed to assess the optimum input required for successful implementation. [ABSTRACT FROM PUBLISHER]

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p = 0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established. [ABSTRACT FROM AUTHOR]

Most people in high income countries experience dying while receiving healthcare, yet dying has no clear beginning, and contexts influence how dying is conceptualised. This study investigates how UK physicians conceptualise the dying patient. We employed Scoping Study Methodology to obtain medical literature from 2006-2021, and Qualitative Content Analysis to analyse stated and implied meanings of language used, informed by social-materialism. Our findings indicate physicians do not conceive a dichotomous distinction between dying and not dying, but construct conceptions of the dying patient in subjective ways linked to their practice. We argue that the focus of future research should be on exploring practice-based challenges in the workplace to understanding patient dying. Furthermore, pre-Covid-19 literature related dying to chronic illness, but analysis of literature published since the pandemic generated conceptions of dying from acute illness. Researchers should note the ongoing effects of Covid-19 on societal and medical awareness of dying. [ABSTRACT FROM AUTHOR]

Background: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. Design: Online survey of UK palliative/hospice services' response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. Respondents: Two hundred and seventy-seven services. Results: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. Conclusions: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model. [ABSTRACT FROM AUTHOR]

Background: Internationally, participation in advance care planning is low. Whilst a community action approach is advocated, what the public know and understand about advance care planning is unknown. Aim: To assess public awareness, knowledge and attitudes towards advance care planning and identify strategies to raise awareness within a public health framework. Design: Sequential mixed methods comprising a cross-sectional survey and focus group/interviews. Setting/participants: A random representative sample of adults from one region of the United Kingdom (n = 1201; response rate 56%) completed a face-to-face survey. Twenty-five participants consented to an additional focus group/interview held in a secure accessible location or via telephone. Results: Most participants (78.7%) acknowledged the benefits of advance care planning conversations, however, two thirds did not want to think about advance care planning or find out more at present. Respondents were reluctant to broach advance care planning as it was linked to end of life care and funeral plans, and they did not wish to cause distress to their loved one. Respondents trusted their family to respect their wishes and they considered having an advance care plan in place would be of assistance in the future. Top-down leadership, normalisation, and increased education were identified as potential approaches to overcome barriers. Conclusions: Advance care planning was recognised as important despite limited awareness, lack of knowledge and misperceptions. Whilst a community action approach to enhance understanding and engagement was supported, a 'one size fits all' approach will not work; rather bespoke targeting is required with educational and media messaging aligned. [ABSTRACT FROM AUTHOR]

Background: The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families. Aim: To explore the barriers and enablers to advance care planning engagement with frail elders. Design: Qualitative in-depth interviews with thematic analysis. Setting/participants: Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons' service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71–95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female. Results: Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach. Conclusions: Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts. [ABSTRACT FROM AUTHOR]

People living with dementia may experience difficulties when making decisions for themselves in the later stages of the condition. While there are mechanisms in England and Wales for appointing an attorney to make decisions about welfare and finances on their behalf, there are no provisions for appointing an attorney to make future decisions about research participation. This is despite a growing focus on Advanced Care Planning and other processes that provide opportunities to discuss future preferences and ensure that decisions are made in line with those preferences. This qualitative study with 15 family caregivers who had acted as research proxies explored the role of Power of Attorney in their decisions about research, and their views about extending current legal arrangements to include research. Five themes were identified: the holistic nature of decision-making; the 'power' of attorney; making decisions by putting yourself in their shoes; support for bringing research under the umbrella of attorney arrangements and a unifying theme of trusting relationships. Legal provisions for prospectively appointing a research proxy may encourage discussion about future wishes and so enable decisions about research to be made that are in accordance with the person's preferences and wishes. However, further consultation with the public including people living with dementia and their families, and a range of stakeholders is needed. Providing guidance to families, people living with dementia and the wider research community may provide greater clarity and improve decision-making in the meantime. [ABSTRACT FROM AUTHOR]

Background: While studies have evaluated caregiver outcomes in heart failure, the burden and support needs when caring for someone with advanced heart failure at the end of life have yet to be outlined. Aim: To identify psychosocial factors associated with caregiver burden and evaluate the support needs of caregivers in advanced heart failure. Design: A sequential mixed methods study comprising two phases: (1) postal survey with advanced heart failure patients and their caregivers and (2) interviews with current and bereaved caregivers. Correlation, chi-square, t test, regression and thematic analysis were undertaken on the data. Participants: Advanced heart failure patients (n = 112) and their caregivers (n = 84) were recruited from secondary care settings across the United Kingdom and Ireland. For phase 2 interviews, current caregivers (n = 20) were purposively recruited from phase 1, and bereaved caregivers (n = 10) were purposively recruited via voluntary organisation, social media and email. Results: More than half the caregivers (53%) had levels of distress associated with depression (Zarit Burden score >24). Caregiver depression score, preparedness for caregiving and patients' depression score predicted caregiver burden. Qualitative analysis identified an overarching theme of lack of future care planning and four subthemes: (1) seeking emotional support from someone who understands, (2) want information on prognostication, (3) lack of knowledge on how to and where to get support and (4) require knowledge on what to expect at the end of life. Conclusion: Caregivers have unmet needs and feel unprepared for the future. Implementation of future care planning by clinical teams should address patient and caregiver support needs and in turn alleviate caregiver burden. [ABSTRACT FROM AUTHOR]

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers. [ABSTRACT FROM AUTHOR]

Background: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. Aim: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. Design: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Setting/participants: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths (n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. Results: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. Conclusion: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems. [ABSTRACT FROM AUTHOR]

Background: Homeless individuals have a high prevalence of multiple chronic comorbidities and early mortality compared to the general population. They also experience significant barriers to access and stigmatization in the healthcare system. Providing advance care planning, palliative care, and end-of-life care for this underserved population is an important health issue. Aim: To summarize and evaluate the evidence surrounding advance care planning, palliative care, and end-of-life care interventions for homeless persons. Design: A systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Data sources: Articles from MEDLINE, EMBASE, CINAHL, PsycINFO, Social Work Abstracts, Cochrane Library, Web of Science, and PubMed databases were searched through 13 June 2015. Peer-reviewed studies that implemented advance care planning, palliative care, and end-of-life care interventions for homeless populations were included. Data from studies were independently extracted by two investigators using pre-specified criteria, and quality was assessed using modified Cochrane and Critical Appraisal Skills Programme tools. Results: Six articles met inclusion criteria. Two studies were randomized controlled trials involving advance directive completion. Two cohort studies investigated the costs of a shelter-based palliative care intervention and predictors for completing advance directives. These studies were rated low to fair quality. Two qualitative studies explored the interface between harm-reduction services and end-of-life care and the conditions for providing palliative care for homeless persons in a support home. Conclusion: The effectiveness of advance care planning, palliative care, and end-of-life care interventions for homeless individuals is uncertain. High-quality studies of interventions that reflect the unique and complex circumstances of homeless populations and investigate patient-related outcomes, caregiver burden, and cost-effectiveness are needed. [ABSTRACT FROM AUTHOR]

The article focuses on a study which aims to explore the experiences of people with end-stage kidney disease with regards to starting haemodialysis, its impact on quality of life and their preferences for future care. It also aims to explore the Advance Care Planning needs of the population. It offers the semi-structured qualitative interview study of people receiving haemodialysis.

The article analyzes experience of senior medical and nursing staff on Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit. The study results found recognition of an illness as life-limiting, Advance Care Planning as a multi-disciplinary process and pros and cons associated with Advance Care Planning.

The article reports a study which was conducted to develop a questionnaire for use with families to assess the quality of care for the dying. The results show that the systematic process of questionnaire development generated evidence for face and content validity of the Evaluating Care and Health Outcomes-for the Dying (ECHO-D). ECHO-D is the first instrument specifically to assess ‘quality of care for the dying’ as well as the impact of the Liverpool Care Pathway (LCP) for the Dying Patient.

Patients with advanced dementia often receive poor end-of-life care. We aimed to design and pilot a palliative care and advance care plan (ACP) intervention. Patients had undergone emergency hospital admission and had severe dementia. The intervention consisted of a palliative care patient assessment which informed an ACP discussion with the carer, who was offered the opportunity to write an ACP for the person with dementia. Carer—patient dyads were randomized to ‘usual care’ or the intervention. Carer-related outcome measures included the Kessler Distress Scale, Decision Satisfaction Inventory, Client Satisfaction Questionnaire and the Euroqol-5D, measured at baseline, six weeks, six months and three months after bereavement. The Satisfaction with End of Life Care in Dementia Scale was completed if the patient died. The 32 patient participants were physically frail and in the advanced stages of dementia: 62% had pressure damage to the skin, all needed feeding assistance and 95% were in pain. Nearly 50% died during the six-month follow-up period. Carers were difficult to recruit during acute admission; 33 patients and carers entered the study (22 intervention arm; 11 control arm). Only seven carers made ACPs. The care planning discussion was well received, but few carers wrote an ACP, despite intensive support from an experienced nurse specialist. Advance care planning is, in theory, a necessary intervention for people with severe dementia; the reluctance of carers to write plans needs to be explored further. [ABSTRACT FROM PUBLISHER]

The author reflects on health care problems in Great Britain. He mentioned how the European Working Time Directive's role as a final evidence needed to persuade local politicians that a new hospital was the only sensible answer to continuous health care problems. He talked about a committee meeting that was held to discuss the building a new hospital. He asserts that he prefers that the British National Health Service remain intact than having independent health centers.