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The aims of this study were to explore relatives' experiences of talking about cancer within the family and to identify their information and support needs. A cross-sectional in-depth interview study with relatives and partners (n = 22) of cancer patients recruited through community settings was conducted. A thematic approach was used for analysis. Information sharing and communication within families operated within a context of cancer-related uncertainty. Discussion about cancer was generally viewed as beneficial, but relatives faced dilemmas, which inhibited information exchange. Participants often devised strategies to manage the challenges faced to fulfil their needs for information and support. This was deemed important as talking about cancer allowed relatives to support patients' preferences for care, deal with practical demands and come to terms with difficult issues. Lack of information was perceived to affect the quality of care participants could provide. Participants did not always want to know everything about the patient's illness, suggesting the importance of tailoring information to individual needs. Offering a range of different kinds of support directly to relatives may improve patient care and emotional well-being. Copyright © 2014 John Wiley & Sons, Ltd.

End-of-life care (EOLC) is a key component in care of older people. However, evidence suggests that the oldest old (85 years) are less likely to access specialist EOLC.The study's objective was to explore experiences of EOLC among the oldest old and determine their reported preference for place of death.The study involved a self-completion postbereavement survey.A census was taken of deaths registered between October 2009 and April 2010 in two health districts, identified from death certificates. Views of Informal Carers-Evalution of Service (VOICES)-Short Form was sent to each informant (n=1422, usually bereaved relative) 6 to 12 months after the death.Of 473 (33%) who responded, 48% of decedents were age 85 or over. There were no age differences in reported care quality in the last three months, but in the last two days the oldest old were reported to receive poorer relief of nonpain symptoms and less emotional and spiritual support. Compared to people under age 85, the over 85s were less likely to be reported to know they were dying, to have a record of their preferences for place of death, to die in their preferred place, to have enough choice about place of death-and more likely to be reported to have had unwanted treatment decisions. Being over 85 years was associated with a reduction in the odds of home death (OR=0.36); failure to ascertain and record preference for place of death contributed to this.Age-associated disparity exists in care provided in the last two days and the realization of preferences.

ObjectiveThe use of continuous sedation until death for terminally ill cancer patients with unbearable and untreatable psychological and existential suffering remains controversial, and little in-depth insight exists into the circumstances in which physicians resort to it. MethodsOur study was conducted in Belgium, the Netherlands, and the UK in hospitals, PCUs/hospices, and at home. We held interviews with 35 physicians most involved in the care of cancer patients who had psychological and existential suffering and had been continuously sedated until death. ResultsIn the studied countries, three groups of patients were distinguished regarding the origin of their psychological and existential suffering. The first group had preexisting psychological problems before they became ill, the second developed psychological and existential suffering during their disease trajectory, and the third presented psychological symptoms that were characteristic of their disease. Before they resorted to the use of sedation, physicians reported that they had considered an array of pharmacological and psychological interventions that were ineffective or inappropriate to relieve this suffering. Necessary conditions for using sedation in this context were for most physicians the presence of refractory symptoms, a short life expectancy, and an explicit patient request for sedation. ConclusionsPhysicians in our study used continuous sedation until death in the context of psychological and existential suffering after considering several pharmacological and psychological interventions. Further research and debate are needed on how and by whom this suffering at the end of life should be best treated, taking into account patients' individual preferences. (c) 2013 The Authors. Psycho-Oncology published by John Wiley & Sons, Ltd.

Background/aim: Health policy places emphasis on enabling patients to die in their place of choice, and increasing the proportion of home deaths. In this article, we seek to explore reported preferences for place of death and experiences of care in a population-based sample of deaths from all causes. Design: Self-completion post-bereavement survey. Setting/Participants: Census of deaths registered in two health districts between October 2009 and April 2010. Views of Informal Carers – Evaluation of Services Short Form was sent to each informant (n = 1422; usually bereaved relative) 6–12 months post-bereavement. Results: Response was 33%. In all, 35.7% of respondents reported that the deceased said where they wanted to die, and 49.3% of these were reported to achieve this. Whilist 73.9% of those who were reported to have a preference cited home as the preferred place, only 13.3% of the sample died at home. Cancer patients were more likely to be reported to achieve preferences than patients with other conditions (p < .01). Being reported to have a record of preferences for place of death increased the likelihood of dying at home (odds ratio = 22.10). When rating care in the last 2 days, respondents were more likely to rate ‘excellent’ or ‘good’ for nursing care (p < .01), relief of pain (p < .01) and other symptoms (p < .01), emotional support (p < .01) and privacy of patient’s environment (p < .01) if their relative died in their preferred place. Conclusions: More work is needed to encourage people to talk about their preferences at the end of life: this should not be restricted to those known to be dying. Increasing knowledge and achievement of preferences for place of death may also improve end-of-life care.

Background Family carers provide strong support for many older adults, often enabling older adults to remain at home. Little is known about the care recipients' perspectives of the role and contributions of family carers, particularly when hospital admissions occur as part of end of life care. Aim This paper explores the meanings of family caring for care recipients by drawing on older adults' perspectives about the impact of hospital admission on established family caring relationships. Design Exploratory semi-structured qualitative interviews. Key findings reported in this paper emerged from within the inductive research design. Setting Interviews were conducted in older adults' place of residence in northwest England between June 2009 and July 2010. Participants Participants were 27 older adults living with heart failure ( n =13) or lung cancer ( n =14), aged 69–89 years (mean 79±4.3 years) and considered by their health professionals to be in their last year of life. In 12 of the interviews, a family carer was also present and made contributions. Findings For community-dwelling older adults, family carers are conceptualised as ‘conductors'; making strong contributions to maintaining the rhythm of good care throughout the illness trajectory. Following older adults' hospital admission, family carers find themselves in the role of ‘second fiddle', their ability to work with the individual and to make or influence decisions vastly reduced. Despite this, carers continue to invest considerable effort in maintaining continuity in the carer relationship to maximise the individual's wellbeing by identifying needs, filling gaps in provision and advocating on patients' behalf. Family carers act flexibly to provide continuity, support and take responsibility for older adults' wellbeing across settings. Conclusions Nurses and family carers working together, and greater appreciation of the contribution and role of family carers by health professionals may contribute to improving the quality and continuity of care for older adults.

Objective This study aimed to understand the experiences of palliative care patients when accessing or making decisions about out of hours (OOH) services. It also aimed to illuminate barriers and enablers to accessing appropriate and timely care following the introduction of the 2004 New General Medical Services Contract. Method Longitudinal prospective qualitative study using semi-structured interviews and telephone interviews over 6 months and analysed for thematic content. 32 patients defined as receiving palliative care in six General Practices and three hospices selected on the basis of size and rural/urban location in Southern England were recruited. Results Continuity of care was highly valued. Participants described the importance of being known by the healthcare team, and the perceived positive implications continuity could have for the quality of care they received and the trust they had in their care. Various factors prevented participants from seeking help or advice from OOH services, despite having health concerns that may have benefitted from medical assistance. Prior poor experience, limited knowledge of services and knowing who to call and, indeed, when to call were all factors that reportedly shaped participants’ use of OOH services. Conclusions Interpersonal or relationship continuity and management continuity are vital to the process of optimising the patient experience of OOH palliative care. While recent service innovations are tackling some of the issues highlighted, this research reinforces the value patients with palliative care needs places on continuity and the need to improve this aspect of care management.

Purpose of the research: breast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions, and to identify their information and support needs and preferences.Methods and sample: data were collected from 28 semi-structured qualitative interviews and 2 focus groups (n = 14), with breast cancer survivors aged 70-90, and were analysed using thematic analysis.Key results: these older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals.Conclusions: many breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with comorbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age.

BACKGROUND: Studying where people die across countries can serve as an evidence base for health policy on end-of-life care. This study describes the place of death of people who died from diseases indicative of palliative care need in 14 countries, the association of place of death with cause of death, sociodemographic and healthcare availability characteristics in each country and the extent to which these characteristics explain country differences in the place of death. METHODS: Death certificate data for all deaths in 2008 (age ≥1 year) in Belgium, Canada, the Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (Andalusia), the USA and Wales caused by cancer, heart/renal/liver failure, chronic obstructive pulmonary disease, diseases of the nervous system or HIV/AIDS were linked with national or regional healthcare statistics (N=2 220 997). RESULTS: 13% (Canada) to 53% (Mexico) of people died at home and 25% (the Netherlands) to 85% (South Korea) diedin hospital. The strength and direction of associations between home death and cause of death, sociodemographic and healthcare availability factors differed between countries. Differences between countries in home versus hospital death were only partly explained by differences in these factors. CONCLUSIONS: The large differences between countries in and beyond Europe in the place of death of people in potential need of palliative care are not entirely attributable to sociodemographic characteristics, cause of death or availability of healthcare resources, which suggests that countries' palliative and end-of-life care policies may influence where people die.

Objectives This study explores the views of older adults who are receiving health and social care at the end of their lives, on how services should be funded, and describes their health-related expenditure. Design Qualitative interview study Setting North West England Participants 30 people aged 69–93 years, diagnosed with lung cancer, heart failure or stroke and judged by health professionals to be in their last year of life. Sixteen participants lived in disadvantaged areas. Main outcome measures Views of older adults on funding of services. Results Participants expressed a belief in an earned entitlement to services funded from taxation, based on a broad sense of being a good citizen. Irrespective of social background, older people felt that those who could afford to pay for social care, should do so. Sale of assets and use of children's inheritance to fund care was widely perceived as an injustice. The costs of living with illness are a burden, and families are filling many of the gaps left by welfare provision. People who had worked in low-wage occupations were most concerned to justify their current acceptance of services, and distance themselves from what they described as welfare ‘spongers’ or ‘layabouts.’ Conclusions There is a gap between the health and social care system that older adults expect and what may be provided by a reformed welfare state at a time of financial stringencies. The values that underpinned the views expressed – mutuality, care for the most needy, and the importance of working to contribute to society – are an important contribution to the debate on welfare funding.

Context: Cancer is widely acknowledged to impact on the whole family. Yet, we do not know if there is benefit (or harm) from patient-family carer interventions in the context of cancer care. Objectives: To report a systematic search for and narrative review of patient-family carer interventions tested in the context of cancer care for effect on symptoms and other health-related problems in patients and/or their family members. Methods: A systematic literature search was carried out using Cochrane principles. Searches were of MEDLINE, EMBASE, PsycINFO, and CINAHL databases for reported trials of patient-family carer focused interventions. Outcomes of interest were health indicators; measures of physical, psychological, social, and quality-of-life status of the patient and/or family member(s). Limits were English language; 1998 to March 2010; and adults. Relevant information was extracted, quality assessed using the Cochrane Collaboration's tool for assessing risk of bias, and presented as a narrative synthesis (meta-analysis was not appropriate). Results: The review found no empirically tested interventions for family groups (patient and two or more family members), but 22 interventions for patient-family carer partnerships (couple interventions) tested in 23 studies and reported in 27 publications. Recruitment and attrition were problematic in these studies, limiting the reliability and generalizability of their results. Conclusion: In the trials of cancer couple interventions included in the review, a pattern emerged of improvement in the emotional health of cancer patients and their carers when the intervention included support for the patient-family carer relationship. Further investigation is warranted.

Summary Background and objectives The illness trajectory in the last year of life in advanced (stage 5) chronic kidney disease is poorly understood. Mapping the trajectory of patient-centered outcomes could facilitate better care. The objectives of this study were to determine trajectories of symptoms and wider health-related concerns in the last year of life in stage 5 chronic kidney disease, managed without dialysis. Design, setting, participants, & measurements A longitudinal symptom survey in three UK renal units was used, using the Memorial Symptom Assessment Scale–Short Form and core Palliative Care Outcome Scale. Average (using mean scores over time) and individual (using individual scores over time, with visual graphical analysis) trajectories were mapped. Results Seventy-four patients (mean age, 81 ± 6.8 years) were recruited; 49 died during follow-up. Average trajectories showed moderate symptom distress and health-related concerns, with marked increase in the last 2 months of life. Visual graphical analysis enabled stable, increasing, or fluctuant individual trajectories to be identified. The proportion following these trajectories varied between outcome measures; regarding symptoms, 50% followed a stable pattern, 24% increased, and 21% fluctuated compared with 26%, 57%, and 21%, respectively, for health-related concerns. Inter-rater agreement in grouping trajectories was high (κ statistic, 0.80 and 0.86, respectively). Conclusions In the 2 months before death, patients reported a sharp increase in symptom distress and health-related concerns. Health care should anticipate and address this increase, which may indicate the patients is approaching death. Considerable individual variation and flexibility/responsiveness of care is important: one size of service does not fit all.

Objectives: To determine the functional trajectory in the last year of life in end-stage renal disease managed without dialysis. Design: Longitudinal cohort study of functional status over time and toward death. Setting: Three renal units in the United Kingdom. Participants: Patients with Stage 5 chronic kidney disease managed conservatively (without dialysis). Measurements: The main outcome measure was functional status, measured using the Karnofsky Performance Scale. Results: Seventy-five participants (mean age 80.7, 62% response rate) recruited and followed up monthly for up to 2 years (median 8-month follow-up, range 1–23 months). Forty-nine (66%) died during follow-up. Those who died had similar distribution of age, ethnicity, primary renal pathology, and comorbidity as those still alive at study end. Analysis according to time before death revealed that functional status remained stable during the last year of life but declined steeply in the last month of life. Conclusion: This distinctive renal trajectory, reported here for the first time, contrasts with that previously described in other conditions. This has important clinical implications—the steep functional decline indicates that healthcare services need to be rapidly responsive to changing needs in this population as function declines in the last months and weeks of life.

Context Longitudinal studies that have described the trajectory of familial caregiving and bereavement outcomes have often failed to include a comprehensive range of carer and caregiving variables or any patient assessments, and only a few have used a recognized structured interview for psychiatric disorders. Objectives To address these limitations, this study aimed to establish links between symptoms of CMD in carers of patients (with advanced disease) during the caregiving phase and their subsequent bereavement. Methods To identify the risk factors for poor caregiving and bereavement outcomes, we assessed patients and caregivers using a wide range of measures in a prospectively acquired sample. The main outcome, CMD, was measured through the use of a standardized interview (Revised Clinical Interview Schedule). One hundred carers of patients with advanced disease (more than 95% of patients had a cancer diagnosis) were interviewed shortly after the patient was referred to a U.K. hospice. Interviews were repeated at three and six months after the death of the patient. Results Multivariate analyses revealed that carers who perceived their caring experience as more burdening had more symptoms of CMD while caring for their loved one. Carer mental health during the caregiving experience was predictive of their mental health at three and six months after death. No relationships were observed between family relations, levels of social support, levels of religious or spiritual beliefs, carers' coping strategies, quality of death in the patient, and caregiving and bereavement outcomes. Conclusion Our findings suggest that much psychological distress detected during caregiving continues into bereavement.

Up to 80% of people with cancer will develop weight loss and anorexia during the advanced stages of the disease. The Macmillan Weight and Eating Studies (2000-2009) have used the Medical Research Council complex interventions framework to develop the first psychosocial intervention for weight- and eating-related distress (WRD and ERD) in people with advanced cancer and their carers: The Macmillan Approach to Weight and Eating (MAWE).This article reports the findings of a Phase II trial of MAWE that investigated its deliverability, acceptability, and patient-perceived effect on WRD and ERD.The Phase II trial, conducted in 2006-2007, was of cluster-randomized design, with two community palliative care teams randomized to different arms. It used mixed methods to compare an intervention group (n=25), the MAWE group, which was supported by MAWE-trained clinical nurse specialists, with a group that received usual care (n=25), the control group.MAWE was deliverable in clinical practice and acceptable to patients. Unplanned exposure of the MAWE group to the intervention before an initial measure of WRD and ERD proved problematic to the trial process. Despite this, quantitative and qualitative analyses indicate that MAWE does not exacerbate WRD and ERD and may help patients with advanced cancer live with the weight loss and anorexia that are the symptoms of cancer cachexia syndrome.A follow-on randomized controlled trial of MAWE is warranted but should be of a revised design.

This paper aims to demonstrate the process of conducting a secondary analysis of primary qualitative datasets. Whilst there is a well-established tradition of carrying out a secondary analysis of quantitative datasets within social and health research, this has not been the case with qualitative datasets. Despite a recent growth in interest in the secondary analysis of qualitative data, very little information is available regarding the process, as publications tend to focus on the outcomes of analyses. A secondary analysis of 28 transcripts, sorted from two primary datasets containing longitudinal and cross-sectional interview data, was carried out. The choice of applying a secondary analysis fulfilled the aims of: (i) addressing a sensitive area of research; and (ii) accessing a research population that was elusive, factors that may be barriers to carrying out research in areas that are considered to be of a sensitive nature, or topic. Secondary analysis has potentially important implications for qualitative researchers who seek to investigate sensitive topics within health, not least of which is the opportunity it offers to facilitate the training of researchers at all levels.

Context There is little evidence on the symptoms experienced by those with advanced (Stage 5) chronic kidney disease (CKD), managed without dialysis, as they approach death. As palliative care extends to noncancer illnesses, understanding symptom prevalence and severity close to death will clarify which symptom interventions are most needed and which elements of (largely cancer-driven) models of palliative care best translate into end-of-life care for this population. Objectives To determine symptom prevalence and severity in the last month of life for patients with Stage 5 CKD, managed without dialysis. Methods Longitudinal symptom survey in three U.K. renal units, using the patient-completed Memorial Symptom Assessment Scale-Short Form (MSAS-SF). We calculated the prevalence of individual symptoms (with 95% confidence intervals [CI] to reflect sample size), plus MSAS-SF subscales, in the month before death. Comparison is made with previously published data on symptoms in the last month of life in advanced cancer, also measured using the MSAS-SF. Results Seventy-four patients (mean age: 81 years; standard deviation [SD]: 6.8) were recruited (response rate: 73%); 49 (66%) died during follow-up (mean age: 81 years; SD: 5.7). "Month before death" symptom data were available for 43 (88%) of the 49 participants who died. Median time of data collection was 18 days from death (interquartile range: 12–26 days). More than half had lack of energy (86%; 95% CI: 73%–94%), itch (84%; 70%–93%), drowsiness (82%; 68%–91%), dyspnea (80%; 66%–90%), poor concentration (76%; 61%–87%), pain (73%; 59%–85%), poor appetite (71%; 57%–83%), swelling arms/legs (71%; 57%–83%), dry mouth (69%; 55%–82%), constipation (65%; 50%–78%), and nausea (59%; 44%–73%). Levels of distress correspond to prevalence, with the exception of dyspnea, which was disproportionately more distressing. The median number of symptoms reported was 16.6 (range: 6–27), rising to 20.4 (range: 7–34) if additional renal symptoms were included. On average, psychological distress was moderate (mean MSAS-PSYCH: 1.55) but with wide variation (SD: 0.50; range: 0.17–2.40), suggesting diverse levels of individual distress. The prevalence of both physical and psychological symptoms and the number reported were higher than those in advanced cancer patients in the month before death. Conclusion Stage 5 CKD patients have clinically important physical and psychological symptom burdens in the last month of life, similar or greater than those in advanced cancer patients. Symptoms must be addressed through routine symptom assessment, appropriate interventions, and with pertinent models of end-of-life care.

The aging of the European population will lead to a rapid increase in dementia cases in the coming decades, posing challenges for the organization and provision of end-of-life care. Studying the place of death of patients with dementia, and what determines it, is relevant in this context. Using death certificates, the deaths of people aged 65 and older whose underlying cause of death was a dementia-related disease was studied in Belgium, the Netherlands, England, Scotland, and Wales. Between 50% (Wales) and 92% (Netherlands) of patients with dementia died in a nursing home and between 3% (Netherlands) and 46% (Wales) in hospital. Home death was rare (3-5%) except in Belgium (11%). Multivariate analysis showed that place of death was related to age, sex, available hospital and nursing home beds, and country of residence. Although availability of hospital and nursing home beds partially explained the variation between countries, considerable variation remained even after controlling for that, plus age, sex, and social support. Place of death from dementia differed significantly between the countries studied. In all countries, a majority of patients with dementia died in a long-term care facility. The provision of appropriate long-term care facilities with appropriate staffing could be the primary policy instrument that could help patients with dementia avoid dying in the hospital and ensure quality of end-of-life care in Europe.

Background: Up to 80% of people with cancer experience involuntary weight loss (1,2). This symptom of cancer cachexia syndrome (CCS) is associated with morbidity and mortality. However, feeding has little effect on weight and survival. There is no current consensus on appropriate diet for people living with CCS. Purpose: To report a systematic review of the evidence base that can inform dietary advice for patients living with CCS. Methods: Searches were conducted of MEDLINE, EMBASE, PsycINFO and CINAHL databases and reference lists, for publications about diet and cancer patients off treatment with symptoms of CCS. Limits were English language; 1998 to 9/2008; adults. 718 abstracts were assessed against nclusion/exclusion criteria and 90 were selected for full-text independent examination by two researchers. Information relevant to the review question was extracted, quality assessed, thematically analyzed and presented as a narrative description. Results: Sixty publications were included in the review. Two dominant perspectives emerged on what should be eaten by cancer patients living with involuntary weight loss. The majority of authors advocated a nutrition dense diet, achieved by nutritional counselling to i) educate on fortification of foods and ii) to advise frequent feeding. The alternative approach was to advise the patient to ‘eat what they want’. There is little robust evidence to justify either approach as able to deliver on the objectives they aim to achieve. Research is needed to establish which sub-groups of weight losing cancer patients can benefit from nutritional support. Conclusion: Feeding may not be futile if combined with other interventions and if evaluated against outcomes such as distress. A new model for the assessment and delivery of nutritional care may help patients living with CCS to optimize nutritional intake within the confines of their i/ disease process and treatment ii/ beliefs about food iii/ social resources iv/ coping approach.

Place of death is an important societal indicator of end-of-life quality for the terminally ill. Using death certificate data, we examined metropolitan/non-metropolitan variation in place of death of patients with life-limiting conditions in Belgium, The Netherlands and England. Metropolitan patients were less likely to die at home and, in England, less likely to die in care homes, than non-metropolitan terminally ill. We found a lesser degree of social support and lower availability of care home beds as partial explanations of the metropolitan/non-metropolitan discrepancy. These findings warrant specific approaches to end-of-life care in metropolitan areas.

The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers—Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey. The pilot study to refine methods for the national survey is also described. The paper also reports on the development of the retrospective, after-death or mortality follow-back method in palliative and end-of-life care, and reviews its strengths and weaknesses.

Title. Experiences of hospital care reported by bereaved relatives of patients after astroke: a retrospective survey using the VOICES questionnaire. Aim. This paper is a report of a study conducted to explore the determinants of satisfaction with health and social care services in the last 3 months and 3 days of life as reported by bereaved relatives of those who died from a stroke in an institutional setting. Background. There is limited research about how best to meet the needs of those who die from stroke. A thorough understanding of the determinants of satisfaction with end of life care is crucial for effective service provision to increase awareness of the needs of dying patients. Methods. During a six-month period in 2003, a population-based survey of bereaved relatives of patients after stroke was conducted using a stroke-specific version of the Views of Informal Carers Evaluation of Services postal questionnaire (183 informants, response rate 37%). The sub-sample included those informants who reported that the deceased person had died in an institutional setting (91%, n = 165). The analysis was divided into two phases: univariate (Pearson chi-square test) and multivariate phase (logistic regression). Results. Logistic regressions showed that discussing any worries about the treatment of the deceased person and feeling that the doctors and nurses knew enough about their condition were predictors of satisfaction with doctors and nurses in the last 3 months of life. Meeting the personal care needs of the deceased person, being involved in decisions and feeling that the deceased person died in the right place were predictors of satisfaction with care in the last 3 days of life. Conclusion. End of life care needs to address the individual needs of patients who die from stroke and those close to them. This study shows that individualised end of life care increases satisfaction and, although the data reported in this paper reflect care in 2003, there is no more recent evidence that contradicts this important overall finding.

This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales ( N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.

Brain death, whether it be brain stem death in the UK, or whole-brain death in the USA, is a prerequisite for heart-beating organ donation. Understanding how brain death is perceived by family members approached about organ donation, its significance to them, and if it is accepted by them, are, therefore, important issues to explore as biomedicine expands the range of end of life technologies that blur the demarcation between life and death. To explore the concept of brain stem death and its meaning to family members the following research questions were posed: (i) what does the diagnosis of death based on brain stem testing mean to bereaved family members who have been approached and asked to consider a donation from a deceased relative, and (ii) how do family members understand the concept of brain stem death? To address these research questions, a secondary analysis of 28 interviews sorted from two primary datasets was carried out. The primary datasets contained longitudinal and cross-sectional interviews carried out in the UK with family members who had been approached about organ donation and agreed to donate their relatives' organs. Data analysis was guided by constructionist grounded theory method and resulted in the theory of Paradoxical Death. In this process, family members and health professionals engage in a series of practical and psychological activities aimed at rationalising real or potential emotional and cognitive conflict resulting from a brain-based diagnosis of death, whilst faced with the physical image of a functioning body. Rationalising emotional and cognitive conflict is how family members and health professionals appeared to process this paradoxical death, a death that is contrary to conventional opinion.

Aim. This paper is a report of a study which explores patients' experiences and how they talk about living and coping with motor neurone disease. Background. Living with motor neurone disease is challenging, frightening and disabling. It leads to progressive physical decline, normally with a prognosis of 3–5 years. Patients have to deal with many problems, including loss of mobility and the inability to communicate. There is little evidence about how people manage these problems or live with this illness. Method. Narrative case studies were used, the unit of analysis being a patient living in their own home or a care home. Thirteen adults were recruited through purposeful sampling. Longitudinal narrative interviews were conducted at three-monthly intervals over an 18-month period in 2005–06. Interviews were analysed focusing on the form and content of the patients' narratives. Findings. Four types of narrative, or storyline were identified. The sustaining storyline is about living life as well as possible through keeping active and engaged in life. In contrast, the enduring storyline concerns living in an insurmountable situation leaving the person feeling disempowered, unable to fight for life or against death. Survival is the essence of the preserving storyline, while the fracturing storyline concerns loss and fear of what is to come. Conclusion. Storylines help make sense of complex narratives by encouraging closer attention and active listening to the stories and serve as organizing threads to help patients, families and healthcare professionals better understand living with motor neurone disease.

Background: it has been shown that nonpharmacologic interventions are effective management techniques for cancer-related fatigue (CRF) in cancer survivors. However, few studies have investigated their effectiveness in patients who are receiving chemotherapy. In this study, the authors tested the effectiveness of a brief behaviorally oriented intervention in reducing CRF and improving physical function and associated distress in individuals who were receiving chemotherapy. Methods: for this randomized controlled trial, 60 patients with cancer were recruited and received either usual care or the intervention. The intervention was delivered on an individual basis on 3 occasions over a period from 9 weeks to 12 weeks, and the objective of the intervention was to alter fatigue-related thoughts and behavior. Primary outcomes were assessed as follows: CRF using the Visual Analogue Scale-Global Fatigue; physical functioning using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 30 Questionnaire, and CRF-associated distress using the Fatigue Outcome Measure. Assessments were made on 4 occasions: at baseline (T0), at the end of chemotherapy (T1), 1 month after chemotherapy (T2), and 9 months after recruitment (T3). Normally distributed data were analyzed using t tests and random-slope/random-intercept mixed models. Results: the intervention demonstrated a trend toward improved CRF, although this effect was reduced once confounders had been controlled statistically. There was a significant improvement in physical functioning (coefficient, 10.0; 95% confidence interval, 2.5-17.5; P = .009), and this effect remained once the confounding effects of mood disturbance and comorbid disorders were controlled statistically. No decrease in fatigue-related distress was detected. Conclusions:the behaviorally oriented intervention brought about significant improvements in physical functioning, indicated a trend toward improved CRF, but detected no effect for fatigue-related distress

Objectives: This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs. Method: Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was ‘involved in their care’ and any known pathways of communication between them. One hundred of these people (35 doctors, 32 nurses, 17 professions allied to medicine, 8 family members and 8 others) were also interviewed. Maps of people/teams and the connections between them for each patient were then reconstructed using social networking software (PAJEK). Results: The 24 patients identified a total of 619 people or teams (mean 26, median 22, range 9–45 per patient) contributing to their care. Selected care network maps are displayed, illustrating the extent and nature of the care networks supporting palliative care patients. Common members of care networks for patients with palliative care needs are revealed, but their individual and unique nature is also apparent. Conclusions: The possible clinical utility and challenges of mapping care networks are discussed. Exploring the care networks surrounding individual patients can be useful for illuminating the extent and complexity of individual patient's care networks; clarifying who is involved and who they communicate with; providing opportunities to see interaction routes that may otherwise be hidden, revealing potentially missing or weak connections; and highlighting overlaps or gaps in provision.

To date, there has been only limited research into the supportive and palliative care experienced by people with cancer and other life-limiting illnesses. There is an urgent need to improve our understanding of the problems faced by people whose lives are changed by serious illness, and to use our knowledge to build better and more responsive programmes of care. The preferences, choices, stories, and voices of those affected by life-limiting illness are now central to the development of more and better research in supportive and palliative care. CECo is a new collaboration between experts from many disciplines and backgrounds that over the next 5 years will work to enhance the quality and impact of research in cancer care by taking a fresh look at some challenging problems. Its goal is to use research evidence to change clinical practice and service organisation in ways that will improve the care of people affected by cancer and other serious illnesses. CECo involves leading universities and professional organisations as well as hospice and cancer services from across England. Its purpose is to raise the standard of research, generate new resources, and foster innovation.

Objectives: To explore general practitioners' (GPs) current involvement in and attitudes towards the provision of palliative care in primary care. Methods: Postal survey of 356 London-based GPs, assessing attitudes towards palliative care provision, district nursing and specialist palliative care services, and priorities for future service development. Results: Currently, 65% of GPs were providing palliative care to patients on their list; 72% agreed or strongly agreed palliative care was a central part of their role; and 27% wanted to hand care over to specialists. Most GPs (66%) disagreed with the statement that ‘palliative care is mainly district nursing (DN) work'. Many were unaware of out-of-hours DN and specialist palliative care services. Multi-variable analysis found four GP characteristics – larger practice size, more years experience as a GP, receipt of palliative care education, and current provision of palliative care – were associated with agreement that palliative care was central to a GP's role. Conclusion: A minority of NHS GPs in London would rather have no involvement in palliative care in primary care. Knowledge of current services for palliative care is generally poor among GPs. These findings highlight potential gaps in services, particularly in small practices. Specialists will need to consider these factors in working with GPs to develop primary palliative care and to enable greater access to specialist palliative care.

Background: Identifying the most important issues for palliative care patients and their families, and assessing whether services address these appropriately is important. Little is known about the views of United Kingdom service users and whether, and in what ways, they differ from those in the published literature from other countries, or from health professionals. Aims: To investigate what is important to measure at the end of life from the perspectives of United Kingdom patients, bereaved relatives and health care professionals. Methods: Ten focus groups, using a modified nominal group technique, with a total of 75 participants (10 patients, 35 professionals and 30 bereaved relatives) enabled issues participants thought important to measure at the end of life to be identified and prioritised using ratings and rankings. Thematic analysis of the data was conducted to enable cross-group comparison. Findings: Seven themes were identified as most important to participants: symptom management; choice and control; dignity; quality of life; preparation; relationships; and co-ordination and continuity. Bereaved relatives and professionals emphasised symptom management, relationships and quality of life, whilst patients prioritised issues around preparation. Conclusions: The study was successful in identifying aspects of end of life care that are important to patients, families and health professionals in the United Kingdom. Although participants were not representative of the wider population in the United Kingdom, the degree of concordance with published studies from outside the United Kingdom increases the credibility of the findings. Quality assurance initiatives need to ensure that they act on information such as this on users’ priorities. Further research is needed to test out the findings in other settings in the United Kingdom, to build on the findings about different participants’ views and to identify similarities and variations between countries.

Increasing numbers of patients with chronic kidney disease Stage 5 (GFR

Stroke is the third most common cause of death in England and Wales, accounting for 11% of all deaths. Predictors of early mortality following stroke have been known for over a century and include a history of stroke, age, disorientation to time and place and level of consciousness. To date, hospices and specialist palliative care services have focused on caring for terminally ill cancer patients, with 95% of their patients in 2000–2001 having cancer. However it has been acknowledged since its inception that the practices and principles of palliative care may be relevant to those dying from other conditions. Recently there has been a growing interest in palliative care for non-cancer diagnosis and increasing recognition that palliative care should be provided on the basis of need rather than diagnosis. Despite the high levels of mortality following stroke, to date, little has been published about dying from stroke. In this study we report on a prospective qualitative study of the nursing and medical care received by dying stroke patients.

Aim To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London. Study design Group discussions with informal carers (n=3 groups) and professionals (n=1 group). Sample and setting Informal carers within a Bengali-speaking community (n=26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n=6). Analysis Data subject to content analysis. Results Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying. Conclusions These findings, together with participants’ views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.

In this paper we report findings of a 1999 nationally representative survey of independent hospices in the UK, focusing on hospice staff and volunteers' experiences of working in hospices. Nineteen of 25 sampled services participated, and these differed little in terms of service provision, size and region from the total sample of 175 services. A response rate of 70% for randomly sampled hospice staff and volunteers was achieved (n504). There were significant intergroup differences (doctors, nurses, nursing auxiliaries, other staff and volunteers) in participants' reported experience of working in the hospice with, for example, doctors being more likely than other groups to feel appreciated and to report receiving adequate support from hospice management. Overall, 31% of respondents wanted more support from management. Half had considered leaving the hospice (65% nurses, 60% other staff, 55% nursing auxiliaries, 40% doctors and 37% volunteers). Nurses who had considered leaving were less satisfied than other nurses with, for example, support from hospice management, and less likely to feel valued by the hospice. These results raise questions about the quality of the relationship between hospice trustees, managers and staff, and about the realities of enhancing multiprofessional teamwork in organizations where there are significant differences between staff groups in perception of, and satisfaction with, the working environment. Voluntary hospice trustees and managers face a difficult task in managing and supporting staff whilst also negotiating relationships with the NHS at a time of rapid change, and ensuring hospices' financial viability. Access to high quality leadership programmes may play an important role in ensuring voluntary hospices are characterized by effective, supportive working relationships.

Objective: To explore patient experience of breathlessness in heart failure. Methods: Semi-structured interviews were undertaken with 27 patients with chronic heart failure and were analysed using a constant comparative approach. Results: The patients had a mean age of 69 (range 38–94 years). All had chronic heart failure with a mean left ventricular ejection fraction of 33.1%. The patient narratives suggested three dominant experiences of breathlessness, "everyday", "worsening" and "uncontrollable". These descriptions predominantly focused on physical functioning, relating to patients' ability to manage breathlessness on a day to day basis. Patients were able to accommodate everyday breathlessness, using a number of coping strategies. In most cases this experience of breathlessness came to be accepted as "normal". Worsening breathlessness was a symptom that patients were unable to manage and that prompted a hospital admission, whereas uncontrollable breathlessness was experienced as a symptom that even health care professionals struggled to control. Conclusions: Patients' descriptions of breathlessness are distinct from medical terminology and more clearly relate to physical adaptations to breathlessness. Further research is required to identify whether heart failure patients' descriptions of breathlessness are different to those of cancer patients, and to establish whether the categories generated from this data set are applicable to other heart failure patients in other settings.

Age and ageing are an important part of the context within which the care and treatment of people with cancer is provided. More information is needed about the effects of cancer treatment on the lives of older people following inpatient care. We conducted a 3-year study in which older people with colorectal cancer completed a detailed questionnaire on multidimensional function and service use before and after elective treatment. Here we present an analysis of changes in functional status and service use over the pre- to post-treatment period, and set out a detailed picture of older people's experiences before and after treatment. In total, 337 patients with colorectal adenocarcinoma aged 58-95 years were interviewed before treatment using the OARS Multidimensional Functional Assessment Questionnaire (OMFAQ), Rotterdam Symptom Checklist (RSCL) and a severity of morbidity score. Study end points were defined as post-treatment functional status, symptom distress, severity of morbidity and frequency of service use. Pre- and post-treatment data were compared using matched analyses. Logistic regression was used to assess associations between age and the main outcome measures, and frequency of service use after treatment was compared between age groups using the chi2 test. Overall, patients experienced both positive and negative outcomes following treatment. It was notable that patients agedor = 75 years showed improvement in only one of the principal outcome measures. Patterns of service use following treatment suggest that support at home is a key issue for patients. With the exception of nursing care, however, help at home is provided on a majority of occasions by families themselves. This raises important questions about how much preparation patients and families receive or would like before they leave hospital after treatment for cancer. A collaborative, family-centred approach to meeting people's needs is called for in the months following inpatient care.

Objective. To investigate the opinions of stakeholders (service commissioners and providers) on how performance data should be presented, in order to develop effective feedback methods to facilitate the use of these data in decision making. Design. A qualitative analysis of semi-structured face-to-face and telephone interviews. League tables and fictional box plots were presented as an illustrative guide. The themes covered in the interviews were the effectiveness of these two feedback formats, their positive and negative characteristics, and ideas for new and improved feedback mechanisms. Participants. Thirty-six stakeholders representing a range of clinical and non-clinical roles within palliative care and the wider health care system across a variety of statutory and non-statutory organizations from London and the West Midlands. Results. Box plots were received more positively than league tables, and qualitative information was considered more appropriate than pictorial feedback. Conventional methods such as league tables and box plots were judged to lack essential information on which important decisions could be based, such as additional contextual information and the methodological assumptions of the instrument. Both feedback methods were considered useful as an impetus to further discussion. There was a consensus that feedback should be constructive and able to be adapted to the organizational realities in which UK health services function. Conclusion. Qualitative research was viewed as the right evidence for gaining an understanding of the quality of end of life care. Stakeholders highlighted the importance of the lay perspective, which requires approaches that illuminate the subjective meanings of patient experience.

The retrospective approach in palliative care research provides valuable insight into death and dying, and the effectiveness of palliative care. The method involves collecting information from proxies (usually significant others) after the patient's death. This exploratory study investigates whether proxies’ accounts differ during bereavement, and provides possible explanations for why discrepancies might occur. Thirteen bereaved family members were interviewed, at three to five months and seven to nine months after the patient's death, about the patient's pain, anxiety, and depression, using semi-structured interviews and the symptom rating scale from the Views of Informal Carers–Evaluation of Services (VOICES) interview. Analysis of VOICES ratings over time indicated consistency for anxiety, while pain and depression ratings were variable and, in many cases, less severe and less frequent with the passage of time. Qualitative analysis of proxies’ interview transcripts revealed a number of categories and themes that could be explained within the psychological and palliative care literature. The findings suggest that timing is an important consideration when gathering information from proxies retrospectively.

Background. The widespread use of clinical tools in nursing practice reflects their usefulness in guiding patient care, evaluating treatment effectiveness and conducting audit. Cultural awareness and the provision of culturally competent care is a high priority for nurses in the United Kingdom (UK), given patterns of increasing ethnic diversity. However, meeting the individual needs of patients can be difficult when language barriers hinder communication. One way to address these difficulties is to translate existing clinical tools. Aim. The aim of this paper is to appraise the potential for, and limitations of, translating clinical tools for use in nursing practice. Discussion. Drawing on a range of studies from the disciplines of health and social science, this review describes and discusses some key considerations relevant to translating clinical tools in nursing. These considerations include the need to ensure cultural equivalence, lack of familiarity with clinical tool formats in some cultures and its impact on responses, and low literacy levels in some populations. Conclusion. Clinical tools provide benefits in identifying patients' problems, guiding patient care, and evaluating treatments and interventions. Translating these tools can help to bridge the language gap that hinders good communication between nurses and patients. Translated clinical tools can be of acceptable cultural equivalence and validity if high quality translation methodologies are employed, together with an awareness of culturally relevant issues when interpreting the information gained from the tools.

To remain at home, terminally ill cancer patients need good symptom control and support from informal carers. Few studies have explored the influence of informal carers on symptom control and vice versa. This qualitative case study was carried out in a specialist palliative care service (SPCS) to explore the reasons why patients were admitted for inpatient care. Ten patients were systematically selected and the main carer and health professionals involved in their care were invited to participate. Semi-structured, audiotape recorded interviews were conducted and a thematic analysis performed on the transcripts, using the ’Frameworkflapproach. The results highlight the vital role that carers play in the assessment and management of symptoms in the community. However, carers reported difficulties in knowing what to monitor, how to interpret symptoms accurately and when to inform a professional. It was also reported that medication was not taken as it was prescribed and a number of reasons were given.

The aim of the study was to investigate the role of age and multidimensional functional status in treatment decisions in older patients with colorectal cancer. Three hundred and thirty-seven patients aged 58-95 years with adenocarcinoma of the colon or rectum were interviewed before and after treatment using the OARS Multidimensional Functional Assessment Questionnaire (OMFAQ), a self-reported severity of morbidity scale, and the Rotterdam Symptom Checklist (RSCL). The OMFAQ rates five dimensions of function: social resources, economic resources, mental and physical health and self-care capacity. The likelihood of patients with Duke's C colorectal cancer receiving adjuvant chemotherapy decreased significantly with age (P = 0.001, trend). Differences in treatment received were not explained by differences in morbidity, economic, mental or physical function, self-care capacity, or any of the RSCL measures. After controlling for age, Duke's C patients who received adjuvant chemotherapy were less impaired in social resources than Duke's C patients who did not (P = 0.06). No other significant pre-treatment differences in functional status were found. Differences in age and social resources exist between patients who do and do not receive adjuvant chemotherapy. Care should be taken to ensure that patients are not excluded from treatment with known survival benefits because of their age, and the question of providing appropriate social support during adjuvant chemotherapy should be re-examined.

Background. The advent of clinical governance in British health policy has placed increased demands on health care providers and practitioners to ascertain the quality of their services. Traditional indicators of quality of health care, such as death or recovery rates, are not appropriate in palliative care. Thus, it is important to establish alternative approaches to measuring the quality of palliative care services and interventions. Aims. Satisfaction levels have been used widely in palliative care to assess quality. A literature review was conducted which aimed to explore the strengths and weaknesses of using satisfaction as an indicator of the quality of palliative care services. It also aimed to provide a solid basis upon which further work could be built. Methods. Five electronic databases were searched using key words and phrases and key authors. Hand searches were conducted of four journals that contributed significantly to the concept of satisfaction, and reference lists of reviewed papers were scrutinized. Relevant papers were reviewed, data were extracted and these data were thematically analysed. Findings. There are a number of important unresolved issues in the literature with regard to using satisfaction as an indicator of the quality of palliative care services. First, few alternatives to satisfaction are available. Secondly, satisfaction is under-theorized and no widely accepted definition exists. Thirdly, there are methodological inconsistencies across studies. It is important to take into account these findings when planning and implementing change following service evaluation using satisfaction as a measure. Conclusions. Relying on findings of satisfaction surveys to determine clinical and policy amendments in palliative care may not result in improvements in overall quality of care. Using satisfaction as a method of assessing the quality of health care services is particularly problematic and requires further investigation in both practical and conceptual terms.

Assessing the outcome and effectiveness of treatment is extremely important in nursing practice and it is vital that outcome measures are available to non-English speakers. We investigated health professionals' views on translating outcome measures for use in nursing practice. Semi-structured interviews were conducted with a purposive sample of 10 health professionals. Content analysis of data identified identified the following two broad themes: meeting need and cultural considerations. Specific palliative care issues were also identified. Low literacy levels among ethnically diverse communities and the need to ensure cultural equivalence were perceived as major challenges for palliative nursing practitioners when translating outcome measures. Given increasing cultural diversity within the UK, health professionals considered clinical tool translation worthwhile because it helps to address inequalities in health-care provision for ethnically diverse communities. A consideration of the cultural context is needed when interpreting responses on translated outcome measures. However, translations into appropriate languages can help overcome communication barriers and minimize the need for family members to act as interpreters for patients with palliative care needs.

This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a 'palliative care patient' are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients' and families' experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users' views.

Objective To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. Method Qualitative thematic analysis of interviews with 24 patients (aged 48–85?years) with 15 different types/sites of cancer and palliative care needs. Results The main theme of ‘patient work—their strategies and project management’ is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and ‘working the system’. Insights are given into the work carried out on patients’ behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. Conclusions The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals.

Background Breast cancer affects one in eight UK women during their lifetime: many of these women now receive adjuvant chemotherapy and hormone therapy. Joint and muscle pains, aches, and stiffness are common but the natural history, aetiology and impact of these symptoms are unknown. A cohort study of newly diagnosed women with primary breast cancer was established to explore this. In this paper we present study methods and sample characteristics, describe participants’ experience of musculoskeletal pain at baseline interview, and explore its impact on quality of life. Methods Women with non-metastatic breast cancer were recruited following primary surgery into a multi-centre cohort study. They received questionnaires by post five times (baseline, 3, 6 , 9 and 12 months) to investigate prevalence, severity, location and correlates of musculoskeletal pain, and impact on quality-of-life. Pain was measured by the Nordic musculoskeletal questionnaire, the Brief Pain Inventory, and MSK-specific questions, and quality of life by the SF-36 and FACIT scales. Results 543 women (mean age 57 years, range 28–87, 64% postmenopausal) were recruited following surgery for primary breast cancer from breast cancer clinics in eight hospitals. Fifteen per cent of the eligible cohort was missed; 28% declined to participate. Joint or muscle aches, pains or stiffness were reported by 69% women with 28% specifically reporting joint pain/aches/stiffness. Quality of life, as measured by the FACT-B and adjusted for age, depression, surgery and analgesic use, is significantly worse in all domains in those with musculoskeletal problems than those without. Conclusions Our findings highlights the importance of a better understanding of these symptoms and their impact on the lives of women with primary breast cancer so that healthcare professionals are better equipped to support patients and to provide accurate information to inform treatment decisions. Further papers from this study will address these issues.

BackgroundThe end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.ObjectiveThe aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.SettingEngland.ParticipantsThirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.Design and methodsThis was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.ResultsTransitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.ConclusionsDevelopment of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

The aims of this study were to explore relatives' experiences of talking about cancer within the family and to identify their information and support needs.A cross-sectional in-depth interview study with relatives and partners (n = 22) of cancer patients recruited through community settings was conducted. A thematic approach was used for analysis.Information sharing and communication within families operated within a context of cancer-related uncertainty. Discussion about cancer was generally viewed as beneficial, but relatives faced dilemmas, which inhibited information exchange. Participants often devised strategies to manage the challenges faced to fulfil their needs for information and support. This was deemed important as talking about cancer allowed relatives to support patients' preferences for care, deal with practical demands and come to terms with difficult issues. Lack of information was perceived to affect the quality of care participants could provide.Participants did not always want to know everything about the patient's illness, suggesting the importance of tailoring information to individual needs. Offering a range of different kinds of support directly to relatives may improve patient care and emotional well-being.

After-death interviews with bereaved respondents are an important tool in the repertoire of researchers evaluating the quality of end-of-life care or investigating the experiences of people at the end of life. Despite the importance of after-death interviews to our understanding of the last months of life, the validity of the information gathered has received little attention. In this article, we review some of the available information, drawing on evidence from cognitive psychology as well as from palliative care studies. Findings from cognitive psychology indicate that memory is a dynamic process, influenced by emotion state and the individual's perspective at the time of the event and at recall. Further research is therefore needed to understand better the circumstances, types of information and research questions for which bereaved relatives are valid surrogates for people who have died.

This is the fourth in a series of five articles One of the reasons behind the rapid development of quality of life measures in health care has been the growing recognition of the importance of understanding the impact of healthcare interventions on patients' lives rather than just on their bodies. This is particularly important for patients with chronic, disabling, or life threatening diseases who live without the expectation of cure and have conditions that are likely to have an impact on their physical, psychological, and social wellbeing. Health professionals frequently make quality of life judgments when making decisions about the care of disabled patients,1 and the professional's view on expected quality of life is often the key factor in determining whether effective treatment for a life threatening condition will be given or withdrawn.2 Professionals' perceptions may, however, be at odds with those held by their patients.3 It is therefore important to ask patients to assess their own quality of life using one of a growing number of reliable and valid measures. Choosing an appropriate measure and using it in clinical practice can be problematic.4 Deciding to use a measure, however, presupposes that patients are able to assess their own quality of life and complete a quality of life measure. Some patients—and in some conditions many patients—are unable to do this because of cognitive impairments, communication deficits, severe distress caused by their symptoms, or because the quality of life measure is too burdensome physically or emotionally.5 These may be precisely the patients for whom information on quality of life is most needed to inform clinical decision making. Rather than lose all information on that patient, someone else (a family member or health professional) may be asked to act as a proxy or surrogate. In this paper …