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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]

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]

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: 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: Methicillin-resistant Staphylococcus aureus is a common organism in hospitals worldwide and is associated with morbidity and mortality. However, little is known about the prevalence in palliative care patients. Furthermore, there is no standardized screening protocol or treatment for patients for whom therapy concentrates on symptom control. Aim: Examining the prevalence of methicillin-resistant Staphylococcus aureus in palliative care patients as well as the level of morbidity and mortality. Design: We performed a prospective study where methicillin-resistant Staphylococcus aureus screening was undertaken in 296 consecutive patients within 48 h after admission to our palliative care unit. Medical history was taken, clinical examination was performed, and the Karnofsky Performance Scale and Palliative Prognostic Score were determined. Prevalence of Methicillin-resistant Staphylococcus aureus was compared to data of general hospital patients. Results: In total, 281 patients were included in the study having a mean age of 69.7 years (standard deviation = 12.9 years) and an average Karnofsky Performance Scale between 30% and 40%. The mean length of stay was 9.7 days (standard deviation = 7.6 days). A total of 24 patients were methicillin-resistant Staphylococcus aureus positive on the first swab. Median number of swabs was 2. All patients with a negative methicillin-resistant Staphylococcus aureus swab upon admission remained Methicillin-resistant Staphylococcus aureus negative in all subsequent swabs. Conclusion: Our study suggests that the prevalence of Methicillin-resistant Staphylococcus aureus among patients in an in-hospital palliative care unit is much higher than in other patient populations. [ABSTRACT FROM AUTHOR]

Background: The need for palliative care is growing internationally with an increasing prevalence of non-malignant diseases. The integrated care pathway was implemented in primary care by multidisciplinary teams from 2009 in a locality in the North East of England. Fourteen general practitioner practices provided data for the study. Aim: To find whether, how, and under what circumstances palliative care registrations are made for patients with non-malignant diseases in primary care. Design: General practitioner practice data were analysed statistically and qualitative data were collected from health care professionals and members of relevant organisations. Findings: A mixed-effects logistic model indicated a significant difference beyond the 0.1% level (p < 0.001) in registrations between the malignant and non-malignant groups in 2011, with an odds ratio of 0.09 (=exp(−2.4266)), indicating that patients in the non-malignant group are around 11 times (1/0.09) less likely to be registered than patients in the malignant group. However, patients with non-malignant diseases were significantly more likely to be registered in 2012 than in 2011 with an odds ratio of 1.46, significant beyond the 1% level. Qualitative analyses indicate that health care professionals find registering patients with non-malignant diseases stressful, yet feel that their confidence in treating this population is increasing. Conclusion: The integrated care pathway began to enable the reduction in inequalities in care by identifying, registering and managing an increasing number of palliative patients with non-malignant diseases. Consensual and inclusive definitions of palliative care were developed in order to legitimise the registration of such patients. [ABSTRACT FROM AUTHOR]

Background: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. Aim: To determine the feasibility of completing ICECAP–Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. Design: Participants were asked to ‘think aloud’ while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. Setting/participants: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). Results: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. Conclusions: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced cancer often have to make difficult decisions, such as how much to spend on moderately life-extending treatments. This and other end-of-life decisions are also influenced by their informal caregivers. Understanding the relative value that patients and their caregivers place on various aspects of end-of-life care can help clinicians tailor treatments to best meet the preferences of their patients. Aim: To quantify willingness to pay of patients with advanced cancer and their caregivers to extend the patients’ life by 1 year and to compare this result to their willingness to pay for other end-of-life improvements. Design: Cross-sectional survey using a discrete choice experiment. Participants: A total of 211 patients with stage IV cancer and their informal caregivers. Results: The willingness to pay of patients to extend their life by 1 year (S$18,570; 95% confidence interval: S$6687–S$30,542) was not statistically different from their willingness to pay to avoid severe pain (S$22,199; S$11,648–S$32,450), to die at home (S$31,256; S$21,249–S$41,391), not be a burden on family and friends (S$4051; −S$3543 to S$11,568), or to receive a high-quality health-care experience (S$16,191; S$9266–S$23,037). Consistent with our hypothesis, caregivers had a greater willingness to pay than patients to extend life (S$61,368; S$37,030–S$86,210) and for most other end-of-life improvements. Conclusion: Results highlight the importance of pain management, supporting home deaths, and addressing other end-of-life concerns, in addition to efforts to extend life. Differences in willingness to pay of patients and caregivers suggest the need for eliciting patient preferences during treatment decision making as opposed to relying on caregiver input. [ABSTRACT FROM AUTHOR]

The article discusses a pre-test and post-test study of the physical and psychological impact of out-of home respite care on caregivers of children with life-threatening illnesses. The study included a consecutive sample of 58 parental caregivers of children who were admitted to a children's hospice for out-of-home respite. Results showed the effectiveness of out-of-home respite care in improving physical and psychological adjustment of caregivers.

The article discusses a study using mixed methods on ensuing selection bias and non-invitation of eligible families in an interview study of the experiences of parents about advance care planning (ACP). Authors of the study examined the differences between not invited and eligible families participating in the study. Results showed the evidence of selective invitation practices that could bias research outcomes.

The article discusses a study which examines the practices, expectations, and confidence levels of clinicians in discussing end-of-life (EOL) care to patients with heart failure (HF). Topics include conducting a multi-site clinician survey, the advocacy of the American Heart Association for EOL care, and the Mayo Clinic Institutional Review Board (IRB) which reviews the study protocol on EOL care.

The article offers information on a study which describe the preparatory strategies of hospice clinicians in preparing family member for the final days of life of hospice patient. It mentions that qualitative descriptive study, individual interviews, and conventional content analysis were used to guide the study. It shows that careful listening to the family, engendering trust, and repetition of the preparation are among the effective strategy for hospice clinicians.

The article discusses the results of the retrospective cohort study on the effectiveness of palliative home-care services in reducing admissions in hospitals and the factors that could predict possible hospitalization of terminally ill patients. It details how the study was conducted which involved 402 patients in Italy who were listed as dying of cancer in 2011. The results reportedly revealed that palliative home-care service is effective in reducing hospitalizations.

Background: An imperative to assess the economic impact of care at the end of life is emerging in response to national policydevelopments in a number of settings. Current focus on health benefits in economic evaluation may not appropriately capture benefitsof interventions at the end of life. No instruments are available for measuring such benefits for economic evaluation of end-of-life care.Aim: To develop a descriptive system for a measure for use in economic evaluation of end-of-life care.Design: An initial phase of in-depth interviews was conducted to develop conceptual attributes for inclusion in a measure; a secondphase of semi-structured repeat interviews with a subsample of informants was carried out to clarify and confirm the final set ofattributes and to develop meaningful wording for a measure.Setting/participants: In total, 23 older people from three groups across the dying trajectory: older people (1) within the generalpopulation, (2) living in residential care and (3) receiving palliative care.Results: Interviews suggested that the important domains to include within this framework from the perspective of those approachingthe end-of-life are choice/having a say in decision-making, love and affection/being with people who care, freedom from physicalsuffering, freedom from emotional suffering, dignity and self-respect, support, and preparation. A full descriptive system comprisingseven questions, each representing one attribute, was developed.Conclusion: Economic evaluation should reflect the broader benefits of end-of-life care. Although the supportive care measuredeveloped here requires validation and valuation, it provides a substantial step forward in appropriate economic evaluation of endof-life care. [ABSTRACT FROM AUTHOR]

The article discusses a study to evaluate the decision-making process in cases where patients request euthanasia and understand the different themes relevant to help in the decision-making process. Participants included 32 cases, 31 relatives and 28 treating physicians from the Netherlands. The findings revealed that several factors like sharing information, relationship building and negotiation, legal requirements, and aftercare helped influence the decision of a request for euthanasia.

Background: Because socioeconomic and cultural factors contribute to where one dies, it is important to document place of death determinants in diverse societies.Aim: The purpose of this study was to describe where persons in an Aotearoa New Zealand hospice die, and to identify factors that are associated with place of death.Design: A retrospective chart review was conducted.Setting/Participants: Data were extracted from the charts of all patients receiving services from one hospice (i.e. secondary care) for whom death occurred during 2006–2008; 1268 cases for whom place of death was recorded comprise this sample.Results: For close to half (47%), death occurred in the hospice inpatient unit, whereas 29% died at home, 8% died in an acute hospital setting, and 17% died in an aged/residential care facility. Bivariate analyses showed that persons who die in an aged/residential care facility are more likely to be aged 65 or older, unmarried, have a non-cancer diagnosis, and are likely poorer. Asians, those aged less than 65, those with cancer, and those admitted initially to hospice for respite care tended to die in the hospice inpatient unit. Multinominal logistic regression indicated that dying at home was only predicted by being from a Pacific Island.Conclusions: Age, economics, diagnosis, ethnicity, marital status, and whether one enters a hospice service for (at least in part) respite were all associated to a certain extent with where one dies. These findings contribute to the growing evidence linking various factors, especially ethnic groups, with place of death. [ABSTRACT FROM PUBLISHER]

Background: In 2006, as the first step of a 3-year research programme to assess the Liverpool Care Pathway for the Dying Patient (LCP) in hospital, the original LCP documentation was translated and piloted in four Italian hospital wards in Genoa. The primary aim was to evaluate the feasibility of LCP implementation in the Italian context. The secondary aim of the study was to evaluate the effectiveness of the LCP with an uncontrolled before–after design.Aim: The aim of the study was to discuss and critically evaluate the methodological issues in designing and interpreting the results of the before–after study design.Setting/participants: All cancer deaths which occurred in four hospital wards (three general medicine and one respiratory disease) 4 months before and 4 months after LCP implementation (2 months for the respiratory disease ward) were registered. Caregivers were interviewed after the patient’s death using the Toolkit After-Death Bereaved Family Member Interview.Results: A total of 111 cancer deaths were identified (63 before and 48 after) and 79 caregivers (71.2%) were interviewed (46 before and 33 after). The analyses on number and characteristics of the patients, interviewed caregivers, compliance and modality of assessment showed significant differences before and after. A remarkable internal correlation coefficient for all of the Toolkit scales within the four hospital wards was observed.Conclusions: This analysis confirms the high risk of selection and information bias inherent the uncontrolled before– after study design. The high internal correlation strongly suggests that clustering should be taken into account in this kind of study. [ABSTRACT FROM PUBLISHER]

The Edmonton Symptom Assessment System (ESAS) is a well-known self-reporting tool for symptom assessment in palliative care. Research has shown that patients experience difficulties in the scoring and interpretation, which may lead to suboptimal treatment. The aims were to examine how palliative care cancer patients interpreted and responded to the ESAS. Eleven patients (3 F/8 M), median age 65 (34–95) with mixed diagnoses were interviewed by means of cognitive interviewing, immediately after having completed the ESAS. The highest mean scores were found with tiredness (6.3) and oral dryness (5.7). The results showed that sources of error were related to interpretation of symptoms and differences in the understanding and use of the response format. The depression and anxiety symptoms were perceived as difficult to interpret, while the appetite item was particularly prone to misunderstandings. Contextual factors, such as mood and time of the day, influenced the answers. Lack of information and feedback from staff influenced the scores. Some patients stated that they scored at random because they did not understand why and how the ESAS was used. The patients’ interpretation must be considered in order to minimize errors. The ESAS should always be reviewed with the patients after completion to improve symptom management, thereby strengthening the usability of the ESAS. [ABSTRACT FROM PUBLISHER]

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]

Recent reviews conclude that the benefits of attending Specialist Palliative Day Care (SPDC) are likely to be in social, psychological and spiritual domains. However, these areas are not easily identified, leaving researchers and practitioners unclear as to what aspects of these domains patients most need and desire. The objective of this review was to systematically evaluate literature on patient-perceived psychosocial experiences of attendance at SPDC. Twelve studies were included. Evidence showed that patients value a person-centred approach that reduces isolation, increases social support, encourages communication and provides activities. Future research could focus on investigating why patients value the psychosocial experiences reported and how these experiences can be defined in a way that would be meaningful to clinical service commissioners. Once this has been done, clinicians can start to measure more effectively clinical effectiveness and devise justifiable interventions to help this patient group. [ABSTRACT FROM PUBLISHER]

To determine the role of non-cancer palliative care in inpatient services in Germany, data from the Hospice and Palliative Care Evaluation (HOPE) were analysed. Since 1999, a three-month census has been conducted annually in German palliative care units. Pooled data from 2002—2005 were tested for differences between non-cancer patients (NCs) and cancer patients (Cs). A total of 4182 patients (NC: 3.5%; C: 96.5%) were documented; functional status (using Eastern Cooperative Oncology Group (ECOG) measures) in NCs was lower compared to Cs (p = 0.009). NCs suffered more often from dyspnoea (40%; C: 29%; p = 0.004), weakness (92,3%; C: 84,5%; p = 0.011) and tiredness (75.4%; C: 66.7%; p = 0.03) and less from nausea (17.1%; C: 28.9%; p = 0.002), vomiting (8.2%; C: 19.4%; p = 0.001) or loss of appetite (55.5%; C: 67.9%; p = 0.002). There were no differences in pain and constipation. Other problems (nursing, psychological) were more frequent for NCs, in particular the need for support in the activities of daily life (90.3%; C: 72.8%; p < 0.001) and disorientation/confusion (32.1%; C: 17.2%; p < 0.001). There were no differences in social problems. NCs are still rare in specialized inpatient palliative care institutions in Germany. The palliative care needs in patients with nonmalignant disease will challenge the health care system as the workload for these services will grow over proportionally. [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]

We examined the degree to which newly diagnosed patients with advanced lung cancer wanted to be informed and involved in medical decision-making, and whether the patients felt their preferences were met. Patients from 13 hospitals in Flanders were interviewed with a standard questionnaire. A total of 128 patients (68%) participated. Of the patients who wanted to be informed about life expectancy, half (53%) reported they were informed, and of those who wanted to be informed about palliative care and end-of-life decisions, 25% and 31% said they were informed, respectively. With regard to participation in medical decision-making (in general, about treatment, transfer or end-of-life), patients who preferred the doctor to make decisions or those who preferred to make the decision themselves often achieved this (in their perception), while patients who wanted an in-between position with some involvement, often did not. To conclude, preferences of patients with lung cancer for information concerning delicate topics and for shared decision-making with the physician were not well met. [ABSTRACT FROM AUTHOR]

Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fiftynine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived 'differences' and 'difficulties' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to highlight the trajectory of palliative care costs over the last five months of life in five urban centres across Canada. Subjects: The study sample was comprised of 160 terminally ill patients and their main informal caregivers. Research Design: A first interview took place in the patient's home, and subsequent follow-up interviews were conducted by telephone at two week intervals until the patient's passing. Measures: Participants were asked to provide information on the goods and services they used related to the patients' health condition, and on informal caregiving time. Results: The overall costs of care gradually increased from the fifth to the last month of the patients' life. A large part of this cost increase was attributable to inpatient care. Among outpatient care costs the largest increase was observed for home care. Informal care costs were particularly high over the last 3 months of life. Conclusions: The knowledge gained from this study would be useful to policy makers when developing policies that could help families caring for a terminally ill loved one at home. [ABSTRACT FROM AUTHOR]