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Background: Transfers from hospital or 'hospice palliative care units' to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. Aim: To understand the experiences of patients discharged to care homes for end-of-life care. Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care. Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough's weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one's quality of life and that the process of finding a care home had been traumatic. No studies investigated patients' views prospectively, the views of staff or the processes of decision-making. Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views. [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]

Background: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking. Aim: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. Design: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment. Setting/participants: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. Results: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%–98%) and a specificity of 94% (95% CI 90%–99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94–1). Conclusion: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings. Trial registry: ISCRTN 97417474. [ABSTRACT FROM AUTHOR]

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]

Older people who live alone face particular challenges if they are to age and die well in the place and manner of their choosing. This discussion paper examines the experiences and needs of older people living alone towards the end of life. The paper focuses on the UK, given recent policy and service development initiatives there which emphasize home as a place of support and care; the promotion of independence; ensuring choice and decision making; and equity. These initiatives do not acknowledge diversity in the older population and make little provision to meet the specific needs that older people living alone may have as they approach the end of life. We identify three broader social factors that influence whether older people who live alone can remain at home until the end of their lives. The first factor is the physical environment; the second concerns their material environment; and the third relates to their social environment and their access to informal and formal care services. In future, palliative care research of relevance to older people should consider living arrangements as an important variable and be cognisant of the way in which wider social issues constrain the quality of end-of-life care that those living alone in older age receive. [ABSTRACT FROM AUTHOR]

This study aimed to evaluate health professionals’ views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice. [ABSTRACT FROM PUBLISHER]

This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n = 43) and families (n = 16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals’ rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families. [ABSTRACT FROM PUBLISHER]

The Assisted Dying for the Terminally Ill Bill proposed to legalise both euthanasia and physician-assisted suicide for those with a terminal illness in the UK. A House of Lords Select Committee was convened to scrutinise this Bill and has recently published its report, which will be debated in Parliament on October 10th 2005. The written and oral evidence submitted to the Select Committee represented a wide range of views on 'assisted dying'. Much of the evidence from those countries which have legalised euthanasia/physician-assisted suicide (The Netherlands, Belgium, Switzerland and Oregon, USA) dealt with the practicalities of ending life, and the legal procedures and safeguards instigated in these countries. All the written and oral evidence in the public domain was scrutinised by the authors whilst the Select Committee was sitting. We have extracted those themes relevant to specialist palliative care practice and present them in this paper. We hope that this will provide a useful resource to inform the forthcoming public debate on assisted dying. The evidence of harms inherent in making such a change in the law, as presented to the Select Committee, has moved all three authors to oppose a change in the law. [ABSTRACT FROM AUTHOR]

Background: The optimal management of diminishing drinking at the end of life is contentious. Clinicians and family members may understand the phenomenon differently and hold divergent priorities regarding care. Family members can be distressed by diminishing drinking and its management, particularly when in a hospital environment. Aim: To explore the experiences of family members when witnessing the diminishing drinking of a dying relative. Design: A narrative inquiry methodology, derived from pragmatism. Setting and participants: Thirteen recently bereaved family members were recruited through the bereavement services of three UK hospitals. Inclusion criteria included having an adult relative who died in hospital of any diagnosis more than 48 hours from admission and who had had noticeable diminishing drinking. Findings: Participants experienced diminishing drinking as an unfolding process that was part of overall decline. They all believed it to be detrimental. Three groups of responses were identified: promoting, accepting and ameliorating. Supportive measures included offering equipment to support drinking, staff being present and communicating about expectations and care management aims. Conclusions: There is potential to improve family members' experiences through re-conceptualisation of diminishing drinking aligned to their experiences, supporting family members by listening to their experiences with insight and strengthening their agency within the management of their relatives with diminishing drinking. [ABSTRACT FROM AUTHOR]

Background: The voices of children and adolescents have historically been substituted by the perspective of adults. There is growing recognition that children (<18 years old) are able to participate in research and appreciate the opportunity to participate in studies. Aim: To share the strategies employed by two research teams from USA and UK, who have successfully recruited children living with parental life-limiting illness as research participants. Findings: The researchers overcame common challenges when negotiating ethics committees by anticipating the IRB/REC concerns, providing the committees with detailed applications including distress protocols, and offering resources to their ethics committee to learn about conducting research with this population. The researchers navigated recruitment and gatekeeping by clinicians and parents by partnering with clinical agencies and nurturing relationships with practitioners who are supportive of the research, offering to present the findings of the study with continuing education credits, and developing children's, adolescents' and parents' project advisory groups to support recruitment, data collection and analysis. Conclusions: Simple strategies can be used to overcome barriers to recruitment, providing opportunities for children to be research participants and for their unique perspectives to be heard in palliative care research. [ABSTRACT FROM AUTHOR]

Background: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. Aim: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. Design: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. Setting/participants: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. Results: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. Conclusions: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'. [ABSTRACT FROM AUTHOR]

Background: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems. Aim: The aim is o identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). Design: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country. Results: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support. Conclusion: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support. [ABSTRACT FROM AUTHOR]

Background: Little research has explored the detail of practice when using sedative medications at the end of life. One work package of the I-CAN-CARE research programme investigates this in UK palliative care. Aims: To investigate current practices when using sedative medication at the end of life in London, UK, by (1) qualitatively exploring the understandings of palliative care clinicians, (2) examining documented sedative use in patient records and (3) comparing findings from both investigations. Design: We conducted focus groups with experienced palliative care physicians and nurses, and simultaneously reviewed deceased patient records. Setting/participants: In total, 10 physicians and 17 senior nurses in London hospice or hospital/community palliative care took part in eight focus groups. Simultaneously, 50 patient records for people who received continuous sedation at end of life in the hospice and hospital were retrieved and reviewed. Results: Focus group participants all said that they used sedative medication chiefly for managing agitation or distress; selecting drugs and dosages as appropriate for patients' individual needs; and aiming to use the lowest possible dosages for patients to be 'comfortable', 'calm' or 'relaxed'. None used structured observational tools to assess sedative effects, strongly preferring clinical observation and judgement. The patient records' review corroborated these qualitative findings, with the median continuous dose of midazolam administered being 10 mg/24 h (range: 0.4–69.5 mg/24 h). Conclusion: Clinical practice in these London settings broadly aligns with the European Association for Palliative Care framework for using sedation at the end of life, but lacks any objective monitoring of depth of sedation. Our follow-on study explores the utility and feasibility of objectively monitoring sedation in practice. [ABSTRACT FROM AUTHOR]

Background: The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease. Aim: To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease. Design: A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale–symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches. Setting/participants: Breathless patients with advanced malignant and non-malignant disease. Results: A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14–67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach’s alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met. Conclusion: Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness. [ABSTRACT FROM AUTHOR]

Background: Caring for dying people can contribute to moral distress experienced by healthcare professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. Aim: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. Methods: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. Setting: Four nursing homes in one large metropolitan area. Participants: A total of 16 staff: 2 nurse managers, 4 nurses and 10 care assistants. Findings: Participants described holding ‘good dying’ values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, general practitioners, and colleagues. These led staff to be able to ‘do the right thing’ or to experience ‘powerlessness’, which could in turn lead to staff perceiving a ‘bad death’ for residents. Conclusion: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to ‘do the right thing’ and unable to influence care decisions in order to avoid a ‘bad death’. This powerlessness is the nature of their moral distress. [ABSTRACT FROM AUTHOR]

Background: The Liverpool Care Pathway was used in UK hospitals (late 1990s to July 2014) in an attempt to generate hospice-style high-quality end-of-life care in acute settings. Despite being widely established, there was limited research or contextual evidence regarding this approach or its impact. Growing criticism from the public, media, politicians and healthcare professionals culminated with a critical independent review (July 2013) and subsequent withdrawal of the Liverpool Care Pathway. Aim: This research explores experiences of doctors using the Liverpool Care Pathway, prior to and during its withdrawal, to better understand shortfallings and inform future initiatives in hospital end-of-life care. Design: Individual semi-structured audio-recorded interviews were transcribed verbatim and concurrently analysed using thematic analysis. Setting/participants: Following ethical approval, volunteer participants from an acute UK hospital were sought (n = 73). A total of 18 specialist doctors were purposively selected. Results: Seven themes shaped doctors’ experiences of using the Liverpool Care Pathway: (1) changing perceptions according to length of clinical practice, (2) individual interpretation and application of the Liverpool Care Pathway, (3) limitations arising from setting, speciality and basic end-of-life care competence, (4) understanding and acceptance of medical uncertainty at the end-of-life, (5) centrality of communication and fear of discussing dying, (6) external challenges, including a culture to cure, role modelling and the media and (7) desire for reassurance in end-of-life care decisions. Conclusion: Future initiatives in hospital end-of-life care must address doctors’ fears, (in)abilty to tolerate medical uncertainty, communication skills and understanding of the dying phase, in order to provide optimum care in the last days of life. [ABSTRACT FROM AUTHOR]

Background: Economic evaluation of palliative care has been slow to develop and the evidence base remains small. Aim: This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist palliative care in three different areas in Ireland. Design: Formal care costs are calculated for community, specialist palliative care, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost. Informal care is valued at the replacement cost of care. Setting/participants: Data on utilisation were collected during 215 'after death' telephone interviews with a person centrally involved in the care in the last year of life of decedents who received specialist palliative care in three areas in Ireland with varying levels of specialist palliative care. Results: Mean total formal and informal costs in the last year of life do not vary significantly across the three areas. The components of formal costs, however, do vary across areas, particularly for hospital and specialist palliative care in the last 3 months of life. Conclusion: Costs in the last year of life for patients in receipt of specialist palliative care are considerable. Where inpatient hospice care is available, there are potential savings in hospital costs to offset specialist palliative care inpatient costs. Informal care accounts for a high proportion of costs during the last year of life in each area, underlining the important role of informal caregivers in palliative care. [ABSTRACT FROM AUTHOR]

Background: A UK charity, Macmillan Cancer Support has funded a local intervention, whereby carers of people affected by cancer and other long-term conditions at end of life are offered a bespoke package of support. Aim: This short report describes the qualitative experiences of carers in receipt of the intervention. Design: Qualitative research utilising in-depth interviews. Discussions were digitally recorded and transcribed verbatim. Data were analysed using thematic analysis. Setting/participants: Participants were carers (n = 10) in receipt of the intervention. Interviews were conducted between August and September 2014 in Lincolnshire (England). Results: Five themes from the interviews were identified: (1) Awareness and advertising, (2) focus of support on the carer, (3) modes of communication, (4) personal attributes and skills of the support worker (5) streamlining and signposting. Conclusion: The intervention was successful within a social care setting. The participants had no overtly negative opinions on the service in its current format and all held it in high regard. Carers felt a sense of reassurance from having background support and maintained that their situation would have been worse had this support not been there. [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]

Background: Stronger generalist end-of-life care at home for people with cancer is called for but the quality of end-of-life care delivered by general practitioners has been questioned. Aim: To determine the degree of and factors associated with bereaved relatives’ satisfaction with home end-of-life care delivered by general practitioners to cancer patients. Design: Population-based mortality followback survey. Setting/participants: Bereaved relatives of people who died of cancer in London, United Kingdom (identified from death registrations in 2009–2010), were invited to complete a postal questionnaire surveying the deceased’s final 3 months of life. Results: Questionnaires were completed for 596 decedents of whom 548 spent at least 1 day at home in the last 3 months of life. Of the respondents, 55% (95% confidence interval: 51%–59%) reported excellent/very good home care by general practitioners, compared with 78% (95% confidence interval: 74%–82%) for specialist palliative care providers and 68% (95% confidence interval: 64%–73%) for district/community/private nurses. The odds of high satisfaction (excellent/very good) with end-of-life care by general practitioners doubled if general practitioners made three or more compared with one or no home visits in the patient’s last 3 months of life (adjusted odds ratio: 2.54 (95% confidence interval: 1.52–4.24)) and halved if the patient died at hospital rather than at home (adjusted odds ratio: 0.55 (95% confidence interval: 0.31–0.998)). Conclusion: There is considerable room for improvement in the satisfaction with home care provided by general practitioners to terminally ill cancer patients. Ensuring an adequate offer of home visits by general practitioners may help to achieve this goal. [ABSTRACT FROM AUTHOR]

The article discusses a study conducted to examine current experiences of doctors and nurses transferring patients in critical care settings home to die. It is noted that the study found that practice of transferring critically ill patients home to die is a rare event in Great Britain, challenges to service provision promoting high-quality care for all adults approaching the end of life and providing choice to critically care patients option to die.

The article offers information on a study which explore the role of District Nurse (DN) in stating the patient's transition towards the dying phase. It mentions that qualitative focus group methodology was used to examine the perspectives of DNs. It shows that proper timing of conversation is the most significant preparation for a good death.

The article discusses a study which describes the prevalence of life-limiting condition in children and young adults by their age, ethnicity, and sex. The study used the English Hospital Episode Statistics dataset to calculate prevalence per 10,000 population. Results show that the diagnostic group's distribution has varied by age which is prevalent in children until age 16-20 years.

The article presents a study which examines the signs and symptoms in children and young people with end of life care needs. The study is investigated using Delphi process, second-round questionnaires, and statistical analyses. Results show that prognostic indicators include failure of physiological systems, deterioration of consciousness, and loss of autonomic control.

The article presents a study which examines how people with life-limiting conditions and their families experience transition, including the implications for hospices of children. The study used a grounded theory approach and in-depth, semi-structured interviews for qualitative study. Results showed that one aspect of developing support for young people is to provide an appropriate building, and a different model of support is required.

The article presents the systematic review of the effect of implementing end of life care policy within nursing care homes. It is mentioned that the aim of this article is to identify the impact of this policy. The study shows the result that improvements are occurred in resident outcomes in relation with staff recognition, and meeting residents' needs for end of life care. It concludes that limited evidence on improved outcomes is obtained.

This study is aimed at exploring the expectations about and the impact on healthcare staff of the Liverpool Care Pathway for the dying patient (LCP) in an Italian hospital. Qualitative information was derived from four focus group (FG) meetings that were carried out separately by profession and scheduled before the beginning and after the end of the implementation process of the Italian version of LCP for hospitals (LCP-I). Interview topics concerned end-of-life care related problems and expectations about the impact of the LCP-I programme. Tape recordings of the FGs were transcribed verbatim, and transcripts analysed independently by two research psychologists using thematic analysis.Five major topics were identified: managing pain and discontinuing inappropriate treatments, communicating with patients, communicating with relatives, communicating between professionals and practical issues. As compared with those reported in the initial FGs, responses from the final FGs highlighted that physicians felt more confident with pain management and with discontinuing inappropriate treatment, and were more inclined to recognize the value of the nurses’ work. Nurses underlined advantages in using pro re nata medication, but stressed lack of personnel and time as obstacles in consistent improvement of end-of-life care. All participants seemed to acquire greater awareness of their difficulties in communication and, paradoxically, became more uncertain of their ability to liaise with dying patients and their families.LCP-I implementation may improve both knowledge about physical symptom management and professional awareness of the problems related to emotional and informative support in end-of-life care. [ABSTRACT FROM PUBLISHER]

Nursing homes are a common site of death, but older residents receive variable quality of end-of-life care. We used a mixed methods design to identify external influences on the quality of end-of-life care in nursing homes. Two qualitative case studies were conducted and a postal survey of 180 nursing homes surrounding the case study sites. In the case studies, qualitative interviews were held with seven members of nursing home staff and 10 external staff. Problems in accessing support for end-of-life care reported in the survey included variable support by general practitioners (GPs), reluctance among GPs to prescribe appropriate medication, lack of support from other agencies, lack of out of hours support, cost of syringe drivers and lack of access to training. Most care homes were implementing a care pathway. Those that were not rated their end-of-life care as in need of improvement or as average. The case studies suggest that critical factors in improving end-of-life care in nursing homes include developing clinical leadership, developing relationships with GPs, the support of ‘key’ external advocates and leverage of additional resources by adoption of care pathway tools. [ABSTRACT FROM PUBLISHER]

The Department of Health as part of its End of Life Care Strategy has developed a set of markers as a quality of care proxy for adults at the end of life. 'The number/proportion of patients dying with the Liverpool Care Pathway (or equivalent) in place' is suggested as a quality metric for all care providers. A retrospective audit of uptake of use of the Liverpool Care Pathway (LCP) in an NHS hospital in the North of England showed that 39% of all patients who died had been placed on the LCP. Overall 58% of patients who died were judged to meet the criteria for LCP use. This represented 81% of patients dying with cancer as a primary cause compared to 51% of patients dying with non-cancer. This difference was statistically very significant. In the Trust under study, 67% of dying patients who fulfilled the LCP criteria were placed on the pathway. The results of this study suggest that a simple percentage of deaths on the pathway is an unsophisticated statistic which needs to be interpreted with care. In particular it will be influenced by the proportion of people dying with cancer or non-cancer. This should be considered particularly when presenting the results to the public and to healthcare stakeholders or when making comparisons between provider organizations. [ABSTRACT FROM AUTHOR]

Background: Terminal illness presents a financial challenge to many households, but in Britain the situation should be eased by state benefits, such as attendance allowance, which is available to everyone in the last six months of life without means testing. Aim: To investigate the use of health and social services, payments and benefit receipt by individuals in differing financial circumstances in the year before death. Methods: Analysis of individual level panel data for 1652 community-dwelling decedents from 12 waves of the British Household Panel Study (1991-2003). Results: In the year before death, over 90% of decedents saw their GP, and around one-third spent some time in hospital. More than 80% paid no fees for any services. Over a third of decedents aged over 65 reported financial strain, but only 13.9% of these were receiving attendance allowance. People who felt that they were having financial difficulties were more likely to be frequent attenders in primary care, taking age, health status and other factors into account (adjusted OR = 1.9, 95% CI = 1.3-2.6, P < 0.001). Older age was associated with less use of primary, but not secondary care. Conclusions: Financial strain was common, but benefit uptake low. Primary health care professionals saw nearly all decedents in their last year, and could play an important role in ensuring that the elderly and the less well off are aware of the services and benefits available to them. [ABSTRACT FROM AUTHOR]

Background: Changing patterns of care for terminally ill people mean that 90% of patients in the UK now spend the majority of their last year of life at home. It is now widely accepted that supporting individuals to die at home relies heavily on the availability of family carers to provide the majority of the care needed. However, one of the most common reasons for unplanned admissions near the end of life is carers' inability to provide continuing care. One strategy to overcome these challenges has been to offer planned respite care. Despite recent studies, in reality little is known about respite services for patients with life limiting illness, in particular how respite is experienced by the caregivers or to what extent respite services address their needs. Methods: This prospective study, comprising mixed methods of data collection, explored the experiences of 25 family carers whose relative had been admitted to the local hospice for inpatient respite care. Semi-structured interviews were conducted at two time points: pre- and post-respite. The Relative Stress Scale Inventory was administered at both interviews. Results: Just over half of the sample were caring for a relative with a diagnosis of cancer (n = 13); the majority of the others had a number of neurological conditions (n = 12). The data demonstrate that managing care for relatives with a life limiting illness was perceived to be hard work, both physically and mentally. Inpatient respite care was considered important as it enabled family carers to have a break from the ongoing care-giving responsibilities, as well as being an opportunity to experience 'normal life' independently. The majority of family carers felt that their expectations of respite for themselves had been achieved. The respite service was well evaluated in relation to: standard of nursing care; alternative facilities on offer, atmosphere; and other care homes. Discussion: Currently, inpatient respite services are provided to two patient groups – those in the last year of life and those with a chronic life limiting illness. However, on closer analysis, the current model of service delivery, a two-week inpatient stay, may not be best suited to those caring for a relative in the last year of life. Similarly, it might be questioned whether an inpatient hospice is the most suitable setting for those patients needing supportive care, rather than specialist palliative care. The study has raised many issues that need to be considered in the support of carers caring for relatives with a life limiting illness with uncertain trajectories. [ABSTRACT FROM AUTHOR]

Objectives: To explore the attitudes of older people towards home as a place of care when dying. Design: A two-phase qualitative study using focus groups and semi-structured interviews. Participants: Eight focus group discussions were held with 32 participants recruited from six purposively selected community groups representing older people in Sheffield, UK. A further 16 men and 29 women participated in semi-structured interviews. Results: Participants identified that home was more than a physical location, representing familiarity, comfort and the presence of loved ones. While participants anticipated that home would be their ideal place of care during dying, practical and moral problems associated with it were recognised by many. Some had no informal carer. Others did not want to be a 'burden' to family and friends, or were worried about these witnessing their suffering. Those who had children did not wish them to deliver care that was unduly intimate. Concerns were expressed about the quality of care that could be delivered at home, particularly in relation to accommodating health technologies and providing adequate symptom relief. Worries were also expressed about those living in poor material circumstances. Mixed views were expressed about the presence of professional carers within the home. Although they were seen to provide much needed support for the informal carer, the presence of 'strangers' was regarded by some as intrusive and compromising the ideal of 'home'. Discussion: Older people perceive factors they associate with 'home' as crucial to a good death, most notably presence of friends and family, but many anticipate that they would prefer to be cared for elsewhere when dying. These findings run counter to assumptions that the medicalised, institutional death cannot be a 'good death'. It is important that dying in hospital is not demonized, but rather efforts made to examine how institutional deaths can take on a more meaningful quality. [ABSTRACT FROM AUTHOR]