Search

Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases., Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics., Design: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs., Setting/participants: Adult national survey respondents - England., Results: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only., Conclusion: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: The experience of caregiving may affect carers' well-being into bereavement. We explored associations between mental well-being and previous experience of bereavement of, and caring for, someone close at the end-of-life., Methods: An end-of-life set of questions was included in population-based household survey administered to adults (age 16 years and above). We used univariable regression to explore the cross-sectional relationship between our primary outcome (Warwick-Edinburgh Mental Well-being Scale (WEMWBS)) and possible explanatory variables: sociodemographic; death and bereavement including ability to continue with their life; disease and carer characteristics; service use and caregiving experience., Results: The analysis dataset included 7606 of whom 5849 (77%) were not bereaved, 1174 (15%) were bereaved but provided no care and 583 (8%) were bereaved carers. WEMWBS was lower in the oldest age class (85 years and above) in both bereaved groups compared with not bereaved (p<0.001). The worst WEMWBS scores were seen in the 'bereaved but no care' group who had bad/very bad health self-assessed general health (39.8 (10.1)) vs 41.6 (9.5)) in those not bereaved and 46.4 (10.7) in bereaved carers. Among the bereaved groups, those who would not be willing to care again had lower WEMWBS scores than those who would (48.3 (8.3) vs 51.4 (8.4), p=0.024)., Conclusion: Mental well-being in bereavement was worse in people with self-reported poor/very poor general health and those with a worse caregiving experience. Although causality cannot be assumed, interventions to help people with worse mental and physical health to care, so that their experience is as positive as possible, should be explored prospectively., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: People with cancer often have unidentified symptoms and social care needs. The Needs Assessment Tool-Cancer (NAT-C) is a validated, structured method of assessing patient/carer concerns and prompting action, to address unmet need., Aims: Assess feasibility and acceptability of a definitive two-armed cluster randomised trial of NAT-C in primary care by evaluating: recruitment of GP practices, patients and carers; most effective approach of ensuring NAT-C appointments, acceptability of study measures and follow-up., Methods: Non-blinded, feasibility study in four General Practices, with cluster randomisation to method of NAT-C appointment delivery, and process evaluation. Adults with active cancer were invited to participate with or without carer. Practices cluster randomised (1:1) to Arm I: promotion and use of NAT-C with a NAT-C trained clinician or Arm II: clinician of choice irrespective of training status. Participants completed study questionnaires at: baseline, 1, 3 and 6 months. Patients booked a 20 minute needs-assessment appointment post-baseline. Patients, carers and GP practice staff views regarding the study sought through interviews/focus groups. Quantitative data were analysed descriptively. Qualitative data were analysed thematically, informed by Normalisation Process Theory. Progression to a definitive trial was assessed against feasibility outcomes, relating to: recruitment rate, uptake and delivery of the NAT-C, data collection and quality., Results: Five GP practices approached, four recruited and trained to use the NAT-C. Forty-seven participants and 17 carers recruited. At baseline, 34/47 (72%) participants reported at least one moderate-severe unmet need, confirming study rationale. 32/47 (68%) participants received a NAT-C-guided consultation, 19 of which on Arm I. Study attrition at one month (n = 44 (94%), n = 16 (94%)), three months (n = 38 (81%), n = 14 (82%)) and six months (n = 32 (68%), n = 10 (59%)). Fifteen patient interviews conducted across the whole study and one focus group at each GP practice. Participants supported a definitive study and found measures acceptable., Conclusion: The feasibility trial indicated that recruitment rate, intervention uptake and data collection were appropriate, with refinements, for a definitive multi-centre cluster randomised controlled trial. Feasibility outcomes informed the design of a 2-armed cluster randomised controlled trial to test the effectiveness and cost-effectiveness of the NAT-C compared with usual care., Competing Interests: The authors have declared that no competing interests exist.

Background: Chronic breathlessness is a disabling syndrome that profoundly impacts patients' and caregivers' lives. Driving is important for most people, including those with advanced disease. Regular, low-dose, sustained-release morphine safely reduces breathlessness, but little is known about its impact on driving., Aim: To understand patients' and caregivers' (1) perspectives and experiences of driving with chronic breathlessness; and (2) perceived impact of regular, low-dose, sustained-release morphine on driving., Design: A qualitative study embedded in a pragmatic, phase III, randomised, placebo-controlled trial of low-dose, sustained-release morphine (⩽32 mg/24 h) for chronic breathlessness. Semi-structured interviews were conducted immediately after participants withdrew or completed the randomised, placebo-controlled trial. Informed by grounded theory, a constant comparative approach to analysis was adopted., Setting/participants: Participants were recruited from an outpatients palliative care service in Adelaide, Australia. Participants included patients ( n  = 13) with severe breathlessness associated with chronic obstructive pulmonary disease and their caregivers ( n  = 9)., Results: Participants were interviewed at home. Eleven received morphine 8-32 mg. Three themes emerged: (1) independence; (2) breathlessness' impact on driving; and (3) driving while taking regular, low-dose, sustained-release morphine., Conclusion: Driving contributed to a sense of identity and independence. Being able to drive increased the physical and social space available to patients and caregivers, their social engagement and well-being. Patients reported breathlessness at rest may impair driving skills, while the introduction of sustained-release morphine seemed to have no self-reported impact on driving. Investigating this last perception objectively, especially in terms of safety, is the subject of ongoing work.

Background: Chronic breathlessness is a recognized clinical syndrome that severely impacts patients and carers, who become increasingly restricted in their daily activities. Often, patients become reliant on their carers, who are required to provide constant support. Although individual experiences of breathlessness have been previously investigated, there are few studies exploring contemporaneous experiences of breathlessness of the patient and their carer. This study aimed to understand the experience of severe chronic breathlessness in people with chronic obstructive pulmonary disease (COPD) from the perspective of the patient and carer unit., Methods: A qualitative study embedded in a randomised, placebo-controlled effectiveness study (RCT) of regular, low-dose (≤32 mg/day), sustained-release morphine for chronic breathlessness associated with COPD. Recruitment occurred between July 2017 and November 2018 in one respiratory and palliative care services, in South Australia. Participants were community-dwelling patients with COPD and severe breathlessness (modified Medical Research Council scale 3 or 4) and their carers. Separate semi-structured interviews were conducted with patients and carers, recorded and transcribed verbatim. Analysis was informed by grounded theory using a constant comparative approach., Results: From the 26 patients with a carer recruited for the RCT in South Australia, nine were interviewed in their homes. Six patients were men, median age 77 years. Carers were mostly women, who were their wives (n = 6), median age 70. Five themes emerged from the data: (1) shrinking world; (2) mutual adaptation; (3) co-management; (4) emotional coping; and (5) meaning in the face of death., Conclusion: Chronic breathlessness is a systemic condition that permeates all aspects of the patient's and carer's lives. Working as a team, patients and carers manage chronic breathlessness to achieve maximal function and well-being. Patients and carers share many aspects of the experience of breathlessness, but the carer seems particularly susceptible to emotional distress. Future chronic breathlessness interventions should target the patient and the carer, both together and separately to address their common and individual needs., Trial Registration: The main trial is registered (registration no. NCT02720822; posted March 28, 2016).

Patient-defined factors that are important at the end of life include being physically independent for as long as possible, good symptom control, and spending quality time with friends and family. Hospice care adds to the quality of care and these patient-centered priorities for people with cancer and their families in the last weeks and days of life. Evidence from large observational studies demonstrate that hospice care can improve outcomes directly and support better and more appropriate health care use for people in the last stages of cancer.Team-based community hospice care has measurable benefits for patients, their family caregivers, and health services. In addition to improved symptom control for patients and a greater likelihood of time spent at home, caregiver outcomes are better when hospice care is accessed: informational needs are better met, and caregivers have an improved ability to move on with life after the patient's death compared with people who did not have access to these services.Hospice care continues to evolve as its reach expands and the needs of patients continue to broaden. This is reflected in the transition from hospice being based on excellence in nursing to teams with a broad range of health professionals to meet the complex and changing needs of patients and their families. Additional integration of cancer services with hospice care will help to provide more seamless care for patients and supporting family caregivers during their caregiving and after the death of the patient.

Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death., Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care., Design: A cross-sectional community household population survey., Setting and Participants: Respondents to the Household Survey for England., Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related ( p < 0.001). Palliative care services reduced the proportion of deaths in hospital ( p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not ( p < 0.001). Respondents' income was not associated with palliative care access ( p = 0.233). Overall, respondents' income and home death were not related ( p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home ( p = 0.069)., Conclusion: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life.

Background: Providing care at end of life has consequences for caregivers' bereavement experience. 'Difficulty moving on with life' is an informative and unbiased symptom of prolonged grief disorder. Predictors of bereaved caregivers' ability to 'move on' have not been examined across the population., Aim: To identify the characteristics of bereaved hands-on caregivers who were, and were not, able to 'move on' 13-60 months after the 'expected' death of someone close., Design: The South Australian Health Omnibus is an annual, random, cross-sectional community survey. From 2000 to 2007, respondents were asked about providing care for someone terminally ill and their subsequent ability to 'move on'. Multivariable logistic regression models explored the characteristics moving on and not moving on., Setting: Respondents were aged ⩾15 years and lived in households within South Australia. They had provided care to someone who had died of terminal illness in the preceding 5 years., Results: A total of 922 people provided hands-on care. In all, 80% of caregivers (745) had been able to 'move on'. Closeness of relationship to the deceased, increasing caregiver age, caregiver report of needs met, increasing time since loss, sex and English-speaking background were significantly associated with 'moving on'. A closer relationship to the deceased, socioeconomic disadvantage and being male were significantly associated with not 'moving on'., Conclusion: These results support the relevance of 'moving on' as an indicator of caregivers' bereavement adjustment. Following the outcomes of bereaved caregivers longitudinally is essential if effective interventions are to be developed to minimise the risk of prolonged grief disorder.

Background: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment., Aim: We compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age., Design: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care., Setting/participants: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years., Results: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to 'move on' with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to 'move on'., Conclusion: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.

Context: Despite limited clinical evidence, long-term oxygen therapy (LTOT) is used for the management of refractory breathlessness in people with life-limiting illnesses who are not necessarily hypoxemic., Objectives: The aim of this study was to understand caregiver factors associated with caring for someone with LTOT from the perspectives and experiences of caregivers themselves., Methods: The qualitative study used semistructured interviews. The study was conducted in two states in Australia. Participants (n = 20) were self-nominated caregivers of people receiving LTOT for refractory breathlessness in the palliative setting., Results: Data analyses established one overarching theme titled: "Oxygen giveth (something to help caregivers relieve breathlessness) and oxygen taketh away (from patients who lose some autonomy)." The theme captured caregivers' feelings of extreme distress in response to witnessing refractory breathlessness, and oxygen fulfilling several critical and beneficial roles in this context. In parallel, caregivers also explicitly and implicitly articulated several downsides to the use of LTOT., Conclusion: Caregivers find caring for someone with refractory breathlessness extremely distressing. The benefits of LTOT are often overestimated, whereas its potential harms are underestimated. As significant stakeholders of people receiving LTOT, caregivers should be provided with opportunities to collaborate with clinicians in evidence-based decision making, efforts should be made to provide them with information and education about the most effective pharmacological and nonpharmacological strategies to manage refractory breathlessness in a palliative care setting including the appropriate use of LTOT to enable them to do so., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: The handheld fan is an inexpensive and safe way to provide facial airflow, which may reduce the sensation of chronic refractory breathlessness, a frequently encountered symptom., Objectives: To test the feasibility of developing an adequately powered, multicenter, multinational randomized controlled trial comparing the efficacy of a handheld fan and exercise advice with advice alone in increasing activity in people with chronic refractory breathlessness from a variety of medical conditions, measuring recruitment rates; data quality; and potential primary outcome measures., Methods: This was a Phase II, multisite, international, parallel, nonblinded, mixed-methods randomized controlled trial. Participants were centrally randomized to fan or control. All received breathlessness self-management/exercise advice and were followed up weekly for four weeks. Participants/carers were invited to participate in a semistructured interview at the study's conclusion., Results: Ninety-seven people were screened, 49 randomized (mean age 68 years; 49% men), and 43 completed the study. Site recruitment varied from 0.25 to 3.3/month and screening:randomization from 1.1:1 to 8.5:1. There were few missing data except for the Chronic Obstructive Pulmonary Disease Self-Efficacy Scale (two-thirds of data missing). No harms were observed. Three interview themes included 1) a fan is a helpful self-management strategy, 2) a fan aids recovery, and 3) a symptom control trial was welcome., Conclusion: A definitive, multisite trial to study the use of the handheld fan as part of self-management of chronic refractory breathlessness is feasible. Participants found the fan useful. However, the value of information for changing practice or policy is unlikely to justify the expense of such a trial, given perceived benefits, the minimal costs, and an absence of harms demonstrated in this study., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: Cancer is one of the most common health conditions in receipt of informal caregiving. This study compares key characteristics of caregivers who cared for someone with cancer until death with caregivers of people with other life-limiting illnesses and their care recipients irrespective of health service utilisation., Method: Data were analysed from annual state-wide South Australian Health Omnibus Surveys (2000-2007) involving 14,624 respondents, regarding end of life care. Descriptive and comparative data are presented., Results: Almost a third of respondents (32%; participation rate 72%) had someone close to them die from an 'expected' death in the preceding 5 years. One in 10 (10%) respondents reported providing hands-on care predominantly for someone with cancer. Compared with non-cancer caregivers, cancer caregivers cared for someone who was significantly younger (mean age 66 (95% CI 64 to 67) years vs 74 (95% CI 72 to 77) years; one-way analysis of variance p<0.0001) and were more likely to report having a hospice/palliative care service involved in the care of the deceased (65% (95% CI 63 to 67) compared with 39% (95% CI 37 to 42). In the Australian context, this may mean contact with inpatient, outpatient and community-based services.There were no differences between the needs which caregivers perceived to be unmet or the perceptions that no additional supports were required between the two groups., Conclusions: Informal caregivers perform a critical social and economic role in care provision. Cancer caregivers are a proportionally larger cohort than non-cancer caregivers. With the increasing incidence of cancer, the sustainability of a voluntary cancer caregiving workforce will be reliant upon minimising the burden of care., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Context: The gap between informal caregivers' expectations of caregiving at the end of life and their actual caregiving experience has important affective and behavioral consequences., Objectives: This study analyzes for the first time the characteristics of those caregivers who report a worse or much worse than expected caregiving experience, providing a potential for future targeted intervention into the caregiving experience., Methods: The South Australian Health Omnibus is an annual, random, face-to-face, and cross-sectional survey. From 2000 to 2007, respondents were asked a range of questions about end-of-life care, including in several years a question about how the caregiving experience compared with caregivers' expectation(s). Family members and friends who reported a worse or much worse than expected caregiving experience were the focus of this analysis. Univariable and multivariable logistic regression models were created to better define this group., Results: Of the 1628 active caregivers for people at the end of life, almost half (48.3%) reported a worse or much worse than expected caregiving experience. A worse or much worse than expected caregiving experience was significantly associated with gender and with level of care provided. Women who provided daily hands-on care were significantly more likely to have a worse than expected experience compared with women who provided intermittent care (odds ratio [OR] 0.65; 95% CI 0.48-0.88; P = 0.005) or rare care (OR 0.39; 95% CI 0.27-0.56; P < 0.001). Of all those providing rare care, women were significantly less likely than men to report a worse than expected caregiving experience (OR 0.61; 95% CI 0.41-0.93; P = 0.020)., Conclusion: Caregiver expectations represent a novel and important focus for investigation into the caregiver experience. Explicitly eliciting expectations may in future lead to ways of better supporting caregivers., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: To examine and compare urban and rural palliative care service availability and patterns of care from randomised, population-based surveys of caregivers of people at the end of life., Design, Setting & Participants: Survey responses on the death of 'someone close' from 23,588 interviews of South Australians conducted between 2001 and 2007 are analysed., Interventions: A randomised population survey., Main Outcome Measures: Explored palliative care service availability, caregiving provided, and characteristics of the deceased and their caregivers., Results: There was no difference in reported rates of accessing specialist palliative care services between rural and urban respondents (in unadjusted and adjusted analyses) nor did the proportion of people for whom cancer was their life-limiting illness. There was greater reliance on friends than first degree relatives in hands-on care provided at the end of life in rural settings. The rates of reported need for more support did not differ between urban and rural respondents for caregivers of people at the end of life., Conclusion: Use of palliative care services was similar for rural and urban caregivers for someone close at the end of life with similar levels of met and unmet needs., (© 2015 National Rural Health Alliance Inc.)

Background: Heart failure (HF) is a frequent condition in the elderly and mortality is high. This study sought to describe the profile of those providing care in the community and their needs., Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross sectional survey conducted within the state. Having standardized data to the whole population, the study describes the subset of the population who identify that they actively cared for someone at the end of life with HF in the five years before survey administration., Results: Three hundred and seventy three respondents (2.0% of the whole population; 4.9% of caregivers) reported being a caregiver of someone with HF. There were 84 active caregivers (day-to-day or intermittent hands on caregivers) for people with HF. Mean age for caregivers for those with HF was much higher than other caregivers (55.7 vs 49.4; p < 0.001) with care lasting for an average of 48.9 months (SD 66.2). People caring for those with HF were far less likely to access specialist palliative care services (38.1% vs 60.9%; p < 0.0001) despite having much greater levels of unmet needs for physical care 28.3% vs 14.1%; p = 0.008)., Conclusion: Study findings suggest that there is a significant burden placed on caregivers for people with HF over extended periods in the community. There are differences in access to services for these caregivers compared to those dying from other conditions, particularly cancer.

Background: Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends., Aim: This population study aims to define the people who actually provide care at the end of life., Setting/participants: A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and 'expected' death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence., Results: People of all ages indicated they provided 'hands on' care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer., Conclusion: This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on 'next-of-kin' status in research will not identify them.

Context: Social relations and networks are vital for sustaining and enhancing end-of-life care. The social capital concept supports a framework to understand the association between social relations and well-being; yet, to date, there has been very limited investigation of social capital in the palliative care literature. A framework for understanding social contexts in end-of-life care is necessary., Objectives: To summarize the literature on social capital, well-being, and quality of life for key outcomes to inform a model of social capital in palliative care., Methods: The electronic databases MEDLINE (1997 to March 2011), Embase (1997 to March 2011), CINAHL (1997 to March 2011), and PsycINFO (1997 to March 2011) were searched using key/MeSH search terms of "social capital," "palliative care," and "well-being" and/or "quality of life." The literature was reviewed to identify key concepts to develop and inform a palliative care social capital framework., Results: A total of 93 articles were included in the literature review, with only two articles identifying discourse on social capital and palliative care. Four key areas integrating the social capital outcomes informed a framework for palliative care., Conclusion: The social capital concept provides a structure for understanding how the organization and meaning of social contexts can potentially enhance or hinder end-of-life care. Research that identifies specificity in application of social capital concepts is fundamental to issues of access to services, sustaining levels of care, quality of life, and well-being. The importance of "bridged" social capital relations and networks for improved resource acquisition and information flow was identified in the literature and outlined within the palliative care social capital framework. Differential access to social capital by disadvantaged groups provides further impetus to engage a model of social capital for palliative care., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: Although the unit of care in palliative care is defined as the patient and their family, there are few rigorous studies on how to improve support for family and friends as they take on the role of caregiver for someone at the end of life., Aim: Separate to patient evaluation and care, this pilot study aimed to define the feasibility and possible outcome measures to evaluate routine assessments and supports specifically for caregivers., Design: In a quasi-experimental design, two communities were included: one received standard specialist palliative care support and one additionally was allocated to a community network facilitator who assessed caregivers' needs and helped mobilize the caregiver's own support network or initiated contact with other community supports in three planned visits. Data were collected at baseline, 4 and 8 weeks using three caregiver assessment tools. Within group comparisons were made using Wilcoxon signed rank test and between group using the Mann-Whitney U-test., Participants: Sixty-six caregivers participated., Results: At 8 weeks, participants in the intervention arm showed significant within-group improvement in caregiver fatigue, sufficient support from others, decreased resentment in the role, greater confidence in asking for assistance and were better able to find resources and support. No between-group changes were seen in this pilot study., Conclusions: There were objective measures of improved support within the intervention group over time for caregivers through the active engagement of the community network facilitator. This pilot supports the case for an adequately powered study.

Background: End-stage lung disease (ESLD) is a frequent cause of death. What are the differences in the supports needed by caregivers of individuals with ESLD at end of life versus other life-limiting diagnoses?, Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey. In 2002, 2003 and 2005-2007, respondents were asked a range of questions about end-of-life care; there were approximately 3000 survey participants annually (participation rate 77.9%). Responses were standardised for the whole population. The families and friends who cared for someone with ESLD were the focus of this analysis. In addition to describing caring, respondents reported additional support that would have been helpful., Results: Of 1504 deaths reported, 145 (9.6%) were due to ESLD. The ESLD cohort were older than those with other 'expected' causes of death (> 65 years of age; 92.6% versus 70.6%; p < 0.0001) and were less likely to access specialised palliative care services (38.4% versus 61.9%; p < 0.0001). For those with ESLD, the mean caring period was significantly longer at 25 months (standard deviation (SD) 24) than for 'other diagnoses' (15 months; SD 18; p < 0.0001). Domains where additional support would have been useful included physical care, information provision, and emotional and spiritual support., Conclusions: Caregiver needs were similar regardless of the underlying diagnosis although access to palliative care specialist services occurred less often for ESLD patients. This was despite significantly longer periods of time for which care was provided.

Context: Health and social services rely heavily on family and friends for caregiving at the end of life., Objectives: This study sought to determine the prevalence and factors associated with an unwillingness to take on the caregiving role again by interviewing former caregivers of palliative care patients., Methods: The setting for this study was South Australia, with a population of 1.6 million people (7% of the Australian population) and used the South Australian Health Omnibus, an annual, face-to-face, cross-sectional, whole-of-population, multistage, systematic area sampling survey, which seeks a minimum of 3000 respondents each year statewide. One interview was conducted per household with the person over the age of 15 who most recently had a birthday. Using two years of data (n=8377; 65.4% participation rate), comparisons between those who definitely would care again and those who would not was undertaken., Results: One in 10 people across the community provided hands-on care for someone close to them dying an expected death in the five years before being interviewed. One in 13 (7.4%) former caregivers indicated that they would not provide such care again irrespective of time since the person's death and despite no reported differences identified in unmet needs between those who would and would not care again. A further one in six (16.5%) would only "probably care again." The regression model identified that increasing age lessens the willingness to care again (odds ratio [OR] 3.94; 95% confidence interval [CI] 1.56, 9.95) and so does lower levels of education (OR 0.413; 95% CI 0.18, 0.96) controlling for spousal relationship., Conclusion: These data suggest that assessment of willingness to care needs to be considered by clinical teams, especially in the elderly. Despite most active caregivers being willing to provide care again, a proportion would not., (Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: Palliative care encompasses physical, psychosocial and spiritual care for patients and caregivers. No population data are available on bereaved people who subsequently report that additional spiritual support would have been helpful., Methods: In a population survey, a respondent-defined question was asked regarding 'additional spiritual support' that would have been helpful if someone 'close to them had died' an expected death in the previous five years. Data (socio-demographic [respondent]); clinical [deceased]) directly standardized to the whole population were analysed., Results: There were 14,902 participants in this study (71.6% participation rate), of whom 31% (4665) experienced such a death and 1084 (23.2%) provided active hands-on (day-to-day or intermittent) care. Fifty-one of the 1084 (4.7%) active caregivers identified that additional spiritual support would have been helpful. The predictors in a regression analysis were: other domains where additional support would have been helpful (OR 1.69; 95% CI 1.46-1.94; p<0.001); and being female (OR 3.23; 95% CI 1.23 to 8.33; p=0.017). 'Additional spiritual support being helpful' was strongly associated with higher rates where additional support in other domains would also have been helpful in: all bereaved people (2.7 vs 0.6; p<0.0001); and in active caregivers (3.7 vs 0.8; p<0.0001)., Conclusion: People who identify that additional spiritual support would have been helpful have specific demographic characteristics. There is also a strong association with the likelihood of identifying that a number of other additional supports would have been helpful. Clinically, the need for additional spiritual support should open a conversation about other areas where the need for further support may be identified.

Purpose: To examine the role of friends as caregivers of people with terminal illness., Method: Piloted questions were included in the 2001-2007 random face-to-face annual health surveys of 23588 South Australians on the death of a loved one, caregiving provided, and characteristics of the caregiver and deceased individual. The survey was representative of the population by age, gender, and region of residence. Analyses focused on friends of the deceased loved one, providing daily or intermittent 'hands on' care. Logistic regression assessed predictors of home death., Results: Daily 'hands on' carers were much more likely to be female and aged between 55 and 64; there was also a younger (12 months. Home deaths were more frequent (32%, p=0.014) when friends were carers, and the rate of palliative care use was higher than when family/others provided care (70 vs 61%). Regression analyses confirmed friends as caregivers as a predictor of home death (OR 1.73: 95%, CI 1.15-2.87)., Conclusion: Friends contribute their caregiving: A cohort of younger caregivers may reflect changing social mores as the extended family shrinks and people turn to friendship networks for care and support at the end of life., (Copyright © 2010 John Wiley & Sons, Ltd.)

Introduction: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers., Methods: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis., Results: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support., Conclusion: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

Hospice/palliative care is a critical component of cancer care. In Australia, more than 85% of people referred to specialized hospice/palliative care services (SHPCS) have a primary diagnosis of cancer, and 60% of people who die from cancer will be referred to SHPCS. The Palliative Care Outcomes Collaboration (PCOC) is an Australian initiative that allows SHPCS to collect nationally agreed-upon measures to better understand quality, safety, and outcomes of care. This article describes data (October 2006 through September 2007) from the first 22 SHPCS, with more than 100 inpatient admissions annually. Data include phase of illness, place of discharge, and, at each transition in place of care, the person's functional status, dependency, and symptom scores. Data are available for 5,395 people for 6,379 admissions. After categorizing by phase of illness and dependency, there remain at the end of each admission 12-fold differences (mean, 26%; range, 4% to 52%) in the percentage of patients who became stable after an unstable phase; seven-fold differences (mean, 22%; range, 6% to 41%) in the percentage of patients with improved symptom scores, five-fold differences (mean, 25%; range, 12% to 64%) in discharge back to the community, four-fold differences (mean, 10%; range, 4% to 16%) in improved function, and three-fold differences in the length of stay (mean, 14 days; range, 6 to 19 days). PCOC shows it is feasible to collect quality national palliative care outcome data voluntarily. Variations in outcomes justify continued enrollment of services. Benchmarking should include all patients whose cancer will cause death and explore observed variations.

Goals of Work: The goal of this study was to evaluate, at a population level, the association between specialized palliative care services (SPCS) and short- and long-term caregiver outcomes., Patients and Methods: The Health Omnibus Survey, a face-to-face survey conducted annually in South Australia since 1991, collects health-related data from a rigorously derived, representative sample of 4,400 households. This study included piloted questions in the 2001, 2002, and 2003 Health Omnibus Survey on the impact of SPCS. Sample size was 9,088 individuals. "Unmet needs," a short-term outcome relevant to the caregiving period during a life-limiting illness, were tallied. "Moving on," a long-term caregiver-defined outcome reflecting the caregiver's adaptation and return to a new equilibrium after the death, was assessed with and without SPCS., Results: Thirty-seven percent (3,341) indicated that someone close to them had died of a terminal illness in the preceding 5 years, of whom 949 (29%) reported that they provided care. SPCS were involved in caring for 60% of deceased patients. Day-to-day caregivers indicated fewer unmet needs when SPCS were involved (p = 0.0028). More caregivers were able to "move on" with their lives when SPCS were involved than when SPCS were not involved (86 vs 77%, p = 0.0016); this effect was greatest in the first 2 years after the loved one's death., Conclusion: At a population level, SPCS were associated with meaningful improvements in short-term ("unmet needs") and long-term ("moving on") caregiver-defined outcomes.

Background: In palliative care, the target population (all people with life-limiting illnesses and their family/caregivers) and the complexity of their needs from diagnosis to bereavement should define the subpopulation who access specialist palliative care services (SPCS). Have caregivers of patients who have not accessed SPCS had their needs met?, Methods: As part of a broader state-wide randomized face-to-face population health survey over six years (18,224 interviews, 71% response), questions were asked of people bereaved in the previous five years when someone close to them died an ;expected' death (39% of respondents). Questions included respondent demographics, the diagnosis of the deceased and, for one year, whether SPCS was of benefit (if used) or needed (if not used). Differential uptake rates were calculated for diagnosis, income, country of birth and age and 2 x 2 tables reflecting the accuracy of match of service with caregiver needs were generated for each group (accuracy = true positives + true negatives/total) *100., Results: Uptake of SPCS was significantly lower in people with a non-cancer diagnosis (40% versus 62%; P = 0.0001), lower income (56% versus 61%; P = 0.0006) and people born where English was not the first language (52% versus 58%; P = 0.0096). The only subgroup where the accuracy of matching between palliative care service uptake and identified needs was lower than the overall average (83%) was where cancer was not the life-limiting illness (69%; cancer 86%)., Discussion: SPCS under utilization has previously been described in the population subgroups explored in this study and assumed to equal unmet needs and poorer outcomes. Caregiver responses suggest that, except for people with a non-cancer diagnosis, lack of service uptake may not represent unmet needs. These results are limited to people with caregivers.

Introduction: End-stage lung disease (ESLD) (predominantly caused by chronic obstructive pulmonary disease and restrictive lung disease) is a significant cause of death. Little is known about community care for people with ESLD especially in the period leading to death. This paper describes demographic characteristics of caregivers, and key characteristics of the deceased irrespective of specialist service utilization., Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey conducted statewide. For the last eight years questions about end of life have been asked of 3000 respondents annually (participation rate 77.9%). Directly standardized to the whole population, this study describes people who cared for someone with ESLD until death., Results: One third (6370/18267) had someone die in the last five years from a terminal illness, 644 from ESLD (3.5% of respondents; 10.2% of deaths). One in five (20.8%) provided physical care: 43 respondents provided day-to-day and 63 provided intermittent hands-on care for an average of 40.1 months (SD 56.9). Caregivers were on average 51.2 years old (range 17-85; SD 16.5) and one in five was a spouse. Additional support to provide physical care was an unmet need by 17% of caregivers. The deceased were an average of 73.9 years old (range 47-92; SD 10.4). Only 31.1% were assessed as 'comfortable' or 'very comfortable' in the last fortnight of life., Discussion: Given the health consequences of caregiving, caregivers of people with ESLD would benefit from prospectively defining their needs given the time for which intense caregiving is provided.

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

Background: Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and reproducibility for confirmatory studies. Being able to define systematically study populations would significantly increase their generalisability and effective translation into practice. Proposal: Based on an informal consensus process by active palliative care researchers challenged by this problem and a review of the current evidence, we propose an approach to creating more comparable cohorts in observational (non-randomised) palliative care studies that relies on defining the study population in relation to a fixed, well-defined event from which analyses are built ('anchoring'). In addition to providing a detailed and complete description of the study population, anchoring is the critical step in creating more comparable cohorts in observational palliative care studies. Anchoring can be done with respect to a single or multiple data points, and can support both prospective and retrospective data collection and analysis. Discussion: Anchoring the cohort to reproducible data points will help create more comparable cohorts in palliative care whilst mitigating its inherent heterogeneity. This, in turn, will help optimise the generalisability, applicability and reproducibility of observational palliative care studies to strengthen the evidence base and improve practice. [ABSTRACT FROM AUTHOR]

Background: Hospice/palliative care emphasizes excellent care for patients, but what about longer-term caregiver outcomes after their caregiving role? What is the role of services in working to ensure that caregivers can re-engage with all aspects of life, including paid employment given that this is an identified stressor for caregivers? Aim: This hypothesis-generating study aimed to explore self-reported, post-care workforce participation, and any association with hospice/palliative care contact. Design: Cross-sectional random population interviews. Setting/Participants: People in the general population were randomly selected for face-to-face interviews about well-being including end-of-life care in South Australia. Questions included experiences of people dying an expected death and whether interviewees provided care. Demographic data included current workforce participation. A regression model explored associations with workforce participation. Results: Of 8945 interviews over three years, 171 participants aged 20–60 years (working age) provided intermittent hands-on care: two in five were men and two in three had qualifications beyond high school; one in two decedents had accessed palliative care services. Reflecting the bivariable analyses, logistic regression models showed associations with workforce participation and: being male (odds ratio [OR] 6.71); use of palliative care services (OR 4.85); and higher levels of education (OR 3.54). Conclusion: An association between workforce participation after caregiving ceased and the use of palliative care services was described, controlling for key factors. Reasons may include continued working, greater rates of return to work, earlier return to work or that people in the workforce are more likely to access services. [ABSTRACT FROM AUTHOR]

Background: Emerging digital health approaches could play a role in better personalized palliative care. Aim: We conducted a feasibility study testing wearable sensor (WS)-triggered ecological momentary assessments (EMAs) and electronic patient-reported outcomes in community palliative care with patient–caregiver dyads. Design: All wore consumer-grade WS for five weeks. Sensor-detected "stress" (heart rate variability algorithm) that passed individualized thresholds triggered a short smartphone survey. Daily sleep surveys, weekly symptom surveys (Integrated Palliative care Outcome Scale), and a poststudy experience survey were conducted. Setting/Participants: Fifteen dyads (n = 30) were recruited from an outpatient palliative care clinic for people with cancer. Results: Daytime sensor wear-time had 73% adherence. Participants perceived value in this support. Quantity and severity of "stress" events were higher in patients. Sleep disturbance was similar but for different reasons: patients (physical symptoms) and caregivers (worrying about the patient). Conclusions: EMAs are feasible and valued in community palliative care. [ABSTRACT FROM AUTHOR]

Background: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families ('carers'). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. Method: A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade). Results: A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. Conclusions: More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don't require a high level of literacy and/or cognition are also required. [ABSTRACT FROM AUTHOR]

Background: For most people, the last 12 months of life are spent living in the community, with the support of family and friends for a number of caregiving functions. Previous research has found that managing medicines is challenging for caregivers. Currently there is little information describing which caregivers may struggle with tasks associated with managing a loved one's medicines. Aim: The aim of this study was to identify factors that flag caregivers who are likely to experience problems when managing someone else's medications. Setting/Participants: The annual South Australian Health Omnibus Survey provides a face-to-face, cross-sectional, whole-of-population view of health care. Structured interviews, including questions covering palliative care and end-of-life care, were conducted with 14,625 residents in their own homes. Results: Of the 1068 respondents who had provided care for someone who died of a terminal illness in the last five years, 7.4% identified that additional support with medicine management would have been beneficial. In addition, three factors were predictive of the need for additional support in managing medicines: aged <65 years; lower household income; and living in a metropolitan region. Conclusion: The findings of this study provide insights to inform the development of palliative care service models to support informal caregivers in the management of medications for people with a life-limiting illness. [ABSTRACT FROM AUTHOR]

Background: Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealth-based model of service provision for community based palliative care patients, carers and clinicians. Methods: This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient's general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring (ACTRN12613000733774). Results: The average age of patients was 71.6 years (range: 49 to 91 years). All 43 patients managed to enter data using the telehealth system. Self-reported data entered by patients and carers did identify changes in performance status leading to changes in care. Over 4000 alerts were generated. Staff reported that videocalls were similar (22.3%) or better/much better (65.2%) than phone calls and similar (63.1%) or better/much better (27.1%) than face-to-face. Issues with the volume of alerts generated, technical support required and the impact of service change were identified. Conclusions: The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service. Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12613000733774 registered on 02/07/2013. [ABSTRACT FROM AUTHOR]

Background: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice. Objective: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD. Methods: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient ( n = 7; n = 4); one caregiver ( n = 3); and one clinician ( n = 8). There was a single caregiver interview, and an expert consensus group-academics ( n = 3), clinicians ( n = 9), patients ( n = 4), and caregivers ( n = 2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached. Results: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations. Conclusions: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing. [ABSTRACT FROM AUTHOR]

The article discusses two core aspects of clinical trials reporting in a palliative medicine, namely, proposed standards governing the collection and reporting of data, and rules governing authorship and publication. It states that existing literature inadequately describes the characteristics of patients, caregivers, systems and interventions included in studies. The article suggests the need of a generalizability framework to ensure a robust evidence base that advances practice.

This article describes family caregivers' responses to a National Inquiry into the Social Impact of Caregiving for Terminally Ill, initiated by Palliative Care Australia, which aimed to influence policy and practice to support caregivers. Caregivers recounted their experiences of supporting a dying relative and reported their unmet needs and the impact that the caregiving role had on their financial, physical and psychosocial wellbeing. The issues raised by caregivers were consistent with data obtained from a wide cross-section of service providers and a number of findings were congruent with empirical literature related to family caregiving. Caregivers' reports confirm that, to maintain their health and well-being, they need adequate resources, fairer remuneration, quality respite care, education about the role, equipment, psychosocial support, home-help, improved access to the paid workforce and to gain community recognition. Such collected evidence reinforced the importance of policy responses and resource allocations that are focused on helping caregivers perform a vital role into the future. [ABSTRACT FROM AUTHOR]

Introduction: This prospective pilot evaluates a free-to-client, live-in support person (LISP) for community palliative care. People who needed additional support to be at home rather than in hospital/hospice were included. A LISP from 0900 Monday to 1600 Friday was offered to palliative clients for an initial 2-week placement. Patients and Methods: Over 24 months, a sequential cohort was evaluated. Hospital admissions avoided and discharges facilitated, costs and potential uptake rates were gathered. Caregivers provided feedback 3 months after the placement. Results: The LISP had 49 long-term placements with 44 clients saving 409 bed days. Median placement was short (5 days; range, 2–33 days). Only 8 clients used the LISP around-the-clock. Net potential savings (allowing for caregiver costs) were AU$11,379 annually. Qualitatively, caregivers appreciated the re-assurance offered. Discussion: This pilot study supports the need for a randomised controlled trial to evaluate further the role of the free-to-client, LISP for community palliative care. Evaluating new models of service delivery for patients and caregivers is imperative in palliative care. The LISP improves choices for people in a cost-neutral way if existing services can be substituted. [ABSTRACT FROM AUTHOR]

Abstract: Breathlessness or “shortness of breath,” medically termed dyspnea, is a common and distressing symptom featuring strongly in advanced lung, cardiac, and neuromuscular diseases; its prevalence and intensity increase as death approaches. However, despite the increasing understanding in the genesis of breathlessness, as well as an increasing portfolio of treatment options, breathlessness is still difficult to manage and engenders helplessness in caregivers and health care professionals and fear for patients. Although hypoxemia does not appear to be the dominant driver for breathlessness in advanced disease, the belief that oxygen is important for the relief of acute, chronic, and acute-on-chronic shortness of breath is firmly embedded in the minds of patients, caregivers, and health care professionals. This article presents current understanding of the use of oxygen for treating refractory breathlessness in advanced disease. The objective is to highlight what is still unknown, set a research agenda to resolve these questions, and highlight methodological issues for consideration in planned studies. [Copyright &y& Elsevier]

Abstract: Context: Systematic reviews and meta-analyses suggest that community specialist palliative care services (SPCSs) can avoid hospitalizations and enable home deaths. But more information is needed regarding the relative efficacies of different models. Family caregivers highlight home nursing as the most important service, but it is also likely the most costly. Objectives: To establish whether community SPCSs offering home nursing increase rates of home death compared with other models. Methods: We searched MEDLINE, AMED, Embase, CINAHL, the Cochrane Database of Systematic Reviews, and CENTRAL on March 2 and 3, 2011. To be eligible, articles had to be published in English-language peer-reviewed journals and report original research comparing the effect on home deaths of SPCSs providing home nursing vs. any alternative. Study quality was independently rated using Cochrane grades. Maximum likelihood estimation of heterogeneity was used to establish the method for meta-analysis (fixed or random effects). Potential biases were assessed. Results: Of 1492 articles screened, 10 articles were found eligible, reporting nine studies that yielded data for 10 comparisons. Study quality was high in two cases, moderate in three and low in four. Meta-analysis indicated a significant effect for SPCSs with home nursing (odds ratio 4.45, 95% CI 3.24–6.11; P <0.001). However, the high-quality studies found no effect (odds ratio 1.40, 95% CI 0.97–2.02; P =0.071). Bias was minimal. Conclusion: A meta-analysis found evidence to be inconclusive that community SPCSs that offer home nursing increase home deaths without compromising symptoms or increasing costs. But a compelling trend warrants further confirmatory studies. Future trials should compare the relative efficacy of different models and intensities of SPCSs. [Copyright &y& Elsevier]