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Aim: This study aimed to estimate the proportion of acute care nurses witnessing end-of-life dreams and visions or having these reported by a patient or relative, and to canvass their related attitudes and beliefs., Design: A cross-sectional survey study was conducted from February 2023 to May 2023., Setting/participants: Participants were medical and surgical nurses from a 200-bed acute care hospital in metropolitan Australia., Results: Fifty-seven nurses participated from a workforce of 169 (34% response rate), of whom 35 (61%) reported they had encountered end-of-life dreams and visions. The nature of end-of-life dreams and visions encountered was similar to those reported in previous studies by patients and clinicians. Nurses generally held positive attitudes towards end-of-life dreams and visions but identified an unmet need for education and training on this aspect of end-of-life care., Conclusion: Our results suggest that nurses in acute care encounter end-of-life dreams and visions in a similar proportion to oncology and long-term care but lower than in palliative care settings. Education and training regarding end-of-life dreams and visions are needed to ensure the provision of comprehensive, patient-centred end-of-life care., Patient or Public Contribution: No patient or public contribution., Impact: Research in sub-acute and long-term care settings suggests that end-of-life dreams and visions are a common accompaniment to the dying process. No research has yet focused on the acute care setting, despite this being the place of death for the majority of people in most high-income countries. This study demonstrates that acute care nurses encounter end-of-life dreams and visions in similar proportions to oncology and long-term care nurses but lower than palliative care nurses. Acute care nurses would benefit from education and training regarding end-of-life dreams and visions to enable the provision of holistic person-centred end-of-life care., Reporting Method: This study was reported using the STROBE Checklist for cross-sectional studies., (© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Background: Chronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, however, this occurs infrequently. This study explored the approaches of respiratory and palliative medicine specialists to palliative care and advance care planning (ACP) in advanced COPD., Methods: An online survey was emailed to all specialists and trainees in respiratory medicine in Australia and New Zealand (ANZ), and to all palliative medicine specialists and trainees in ANZ and the United Kingdom., Results: Five hundred seventy-seven (33.1%) responses were received, with 440 (25.2%) complete questionnaires included from 177 respiratory and 263 palliative medicine doctors. Most respiratory doctors (140, 80.9%) were very or quite comfortable providing a palliative approach themselves to people with COPD. 113 (63.8%) respiratory doctors recommended referring people with advanced COPD to specialist palliative care, mainly for access to: psychosocial and spiritual care (105, 59.3%), carer support (104, 58.5%), and end-of-life care (94, 53.1%). 432 (98.2%) participants recommended initiating ACP discussions. Palliative medicine doctors were more likely to recommend discussing: what palliative care is (p < 0.0001), what death and dying might be like (p < 0.0001) and prognosis (p = 0.004). Themes highlighted in open responses included: inadequate, fragmented models of care, with limited collaboration or support from palliative care services., Conclusions: While both specialties recognised the significant palliative care and ACP needs of people with advanced COPD, in reality few patients access these elements of care. Formal collaboration and bi-directional support between respiratory and palliative medicine, are required to address these unmet needs.

Anecdotal evidence from Australia and abroad suggests that health professionals may fear potential legal and/or professional repercussions if their patient dies after receiving pain relieving medication at the end of life. As a result, patients may be under-medicated and their pain and other symptoms not adequately relieved. The regulatory repercussions from inappropriate administration of medications are potentially broad and include criminal charges, civil negligence claims, coronial investigations and disciplinary proceedings. But despite these potentially serious repercussions, a review of publicly available cases in Australia reveals there has been comparatively little judicial or quasi-judicial scrutiny where over-medication is alleged to have resulted in a patient's death. In this article, we describe the regulatory framework that governs this field of medical practice and analyse the extent to which the actions of health professionals have been scrutinised, and the consequences of that scrutiny. We identify a number of themes arising from this analysis and conclude that fears of legal or professional repercussions are largely unfounded, and that existing laws and other forms of regulation should not inhibit the prescription and administration of adequate pain and other symptom relief to people at the end of life.

Context: In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings., Objective: To explore patients' levels of pain and other symptoms while receiving care from PCSs., Method: PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale., Results: Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe 'other symptoms', 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients., Conclusions: Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as 'severe'. Our findings highlight the importance of routine, comprehensive assessment of patients' concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting., (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/)

Background: There is growing interest in end-of-life care in cancer patients. We aim to characterise health service use and costs in decedents with cancer history and examine factors associated with resource use and costs at life's end., Methods: We used routinely collected claims data to quantify health service use and associated costs in two cohorts of elderly Australians diagnosed with cancer: one cohort died from cancer (n=4271) and the other from non-cancer causes (n=3072). We used negative binomial regression to examine the factors associated with these outcomes., Results: Those who died from cancer had significantly higher rates of hospitalisations and medicine use but lower rates of emergency department use than those who died from non-cancer causes. Overall health care costs were significantly higher in those who died from cancer than those dying from other causes; and 40% of costs were expended in the last month of life., Conclusions: We analysed health services use and costs from a payer perspective, and highlight important differences in patterns of care by cause of death in patients with a cancer history. In particular, there are growing numbers of highly complex patients approaching the end of life and the heterogeneity of these populations may present challenges for effective health service delivery.

Background: Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances., Methods: Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted., Findings: HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio [OR] 2.79; 95% CI 136, 5.74) and use of palliative care services (odds ratio: 1.95, 95% CI: 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data., Conclusions: A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome.

Background: As death approaches, patients are at their most frail, but an increasing symptom burden often necessitates an increase in medications, putting them at higher risk for drug-drug interactions., Objectives: To assess the potential for drug-drug interactions in routine prescribing at the end of life., Methods: An Australian retrospective multicentre case-note review of 266 consecutive adult patients who were referred to specialist palliative care, with data available on 166. Medications used in the last 2 weeks of life were screened for potential interactions using the 'Stockley's Drug Interactions' software., Results: The mean number of medications prescribed was 10.8, median 9 (IQR 6-14); all patients received at least one medication. In this study, 72% of patients were at risk of 1 or more potential drug-drug interaction. The mean number of potential interactions was 4.4, with a median of 2.5 (IQR 0-7) per patient. There were only 4/166 (2.4%) prescribed medications with an associated clinical record of an adverse drug reaction., Conclusions: Potential drug-drug interactions are common for this group of patients. Some interactions may be recognised as an acceptable risk when the prescription is written. Further research is necessary to determine the best way to improve recognition of potential drug-drug interactions and the rates of morbidity or accelerated mortality associated with this. It is likely that palliative care services will need to implement multiple strategies including greater use of computerised prescribing software, and greater closer liaison with clinical pharmacists., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Purpose: Providing care to patients nearing the end of life can place a considerable burden on caregivers. Hence, policy decisions on interventions in palliative care should be guided by information on this burden. This study investigates construct validation of two preference-based caregiver outcome instruments suitable for economic evaluations: the Carer Experience Scale (CES) and the Care-related Quality of Life (CarerQol) instrument. Moreover, this study reports caregiver experiences in end-of-life care., Methods: Data were collected with written questionnaires among caregivers of patients receiving palliative care services in the Southern metropolitan area of Adelaide, South Australia (n = 97). The effect of caregiving on caregivers was measured with the CES, CarerQol, Process Utility (PU) and Caregiver Strain Index (CSI). Convergent, discriminative and clinical validity were studied., Results: As hypothesized, higher negative effect of caregiving measured on the CES was associated with higher negative effect on the CarerQol. Both the CES and CarerQol were associated in the expected positive direction with less strain from caregiving (CSI), more positive care experiences and more PU from caring. Caregivers' and care recipients' health status and duration of caregiving were negatively associated with caring experiences., Conclusions: Our findings suggest that the CES and CarerQol validly assess the effect of caregiving on caregivers in end-of-life care. Economic evaluations in end-of-life care should attempt to incorporate such instruments to provide a more holistic assessment of the true impact of interventions, especially where family and friends are heavily involved in caregiving.

Introduction: There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease (MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals., Methods: Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes., Results: A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individual's version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members)., Conclusions: Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs.

Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services., Methods: A population-based analysis of caregivers was performed from piloted questions included in the 2001-2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence., Findings: Most active care was provided by older, close family members, but large numbers of young people (ages 15-29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking "hands-on" care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief., Conclusion: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.

Interventions designed to assist informal caregivers who serve individuals at or near the end of life have predominantly focused on caregiving spouses. Can we define other caregiver subpopulations--by intensity of care provided--so as to enable better a) identification of caregiver needs and b) targeting of support to caregivers? The Health Omnibus Survey, an annual face-to-face survey in South Australia, collects health-related data from a representative sample of 4400 households. Piloted questions included in the 2001-2005 Health Omnibus surveys addressed death of a loved one, caregiving provided, impact of caregiving and caregiver characteristics. Of 18,224 respondents, 5302 reported a loved one's death due to terminal illness in the previous 5 years. In all, 502 (10%) provided daily care [5-7 days/week], 619 (12%) provided intermittent care [2-4 days/week] and 425 (8%) provided rare care. Active (daily plus intermittent) caregivers, compared with non-active (rare) caregivers, were more often women (63% vs 50%; P < 0.0001). Daily caregivers were distinguishable from intermittent; daily caregivers were more often widowed (95% vs 7%; P < 0.0001) and >or=60 years (80% vs 64%; P < 0.0001); intermittent caregivers were more commonly children/parents (35%), other relatives (33%), or friends (26%; P < 0.0001) and were better educated, more active in paid work and wealthier. Financial burden, experience at time of death, ability to move on after the death and need for grief support also differed by intensity of caregiving. Caregiver subpopulations can be defined according to intensity of caregiving with distinct demographic features helping to distinguish them.

The aim of this systematic review was to examine studies that have investigated sustaining hope during prognostic and end-of-life issues discussions with terminally ill patients and their families. A comprehensive search of databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Central Register of Controlled Trials) and handsearching, from 1985 to June 2006, identified 27 studies. This review suggests that the issues surrounding hope in this context are complex. Despite the lack of unanimity among researchers regarding the definition of hope, findings suggest that balancing hope with honesty is an important skill for health professionals (HPs). Many patients seem to be able to maintain a sense of hope despite acknowledging the terminal nature of their illness. Patients and caregivers mostly preferred honest and accurate information, provided with empathy and understanding. Many different sources of hope were identified in this context in broad aspects of life, not just the medical situation. HPs need to recognize this spectrum of hope and appreciate that patients may simultaneously hope for 'cure' while acknowledging the terminal nature of their illness. HPs may help patients to cope with their terminal prognosis by exploring and fostering realistic forms of hope that are meaningful for the particular patient and their family., ((c) 2007 John Wiley & Sons, Ltd.)

Introduction: Delirium in advanced cancer is prevalent, with limited prospective data to guide management. The aim was to survey current practice of specialists using two contrasting cases of delirium in cancer., Methods: A questionnaire was designed to identify investigations and treatment used, in relation to two cases., Results: Overall response rate (n = 270) was 30%. Place of care: Only 35% of medical oncologists would consider care at home for a patient with reversible delirium compared with 66% of other specialists., Investigations: 85% specialists would order basic bloods, however, medical oncologists were more likely to use oxygen saturation and head computed tomography, psychogeriatricians more likely to order thyroid function and palliative medicine specialists less likely to order chest X-ray and urine culture. Greater than 40% of specialists would do no investigations for terminal delirium., Treatment: Medical oncologists use more pre-emptive therapies and more likely to use a benzodiazepine as agent of choice, and Palliative medicine specialists used significantly more neuroleptics to treat hypoactive symptoms of delirium., Discussion: The survey emphasise significant areas of variability in the management of delirium in advanced cancer. Furthermore, evidence to guide management in ways that draw on the strengths and knowledge of each specialty is urgently needed.

Many health professionals (HPs) express discomfort at having to broach the topic of prognosis, including limited life expectancy, and may withhold information or not disclose prognosis. A systematic review was conducted of 46 studies relating to truth-telling in discussing prognosis with patients with progressive, advanced life-limiting illnesses and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Register of Controlled Trials) up to November 2004, with handsearching of studies, as well as inclusion of studies satisfying selection criteria reported in 2005 by the authors. The reference lists of identified studies were hand-searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Results showed that although the majority of HPs believed that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. Reasons include perceived lack of training, stress, no time to attend to the patient's emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment. Studies suggest that patients can discuss the topic without it having a negative impact on them. Differences and similarities in findings from different cultures are explored.

Little research has compared the perceptions of health professionals (HPs), patients, and caregivers about the communication of prognostic information. The objectives of this literature review were to determine 1) patient and caregiver perceptions of levels of information received about prognosis and end-of-life (EoL) issues regarding a life-limiting illness; 2) patient perceptions of and factors related to their understanding and awareness of prognosis; 3) HPs' perceptions of patients' wishes about disclosure of prognosis and factors related to their decision whether to disclose; and 4) concordance between HPs and patients/caregivers regarding the information given by HPs about prognostic and EoL issues. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Register of Controlled Trials [Central]) up to November 2004. The reference lists of identified studies were hand searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Fifty-one studies were identified. There was a large discrepancy between patients/caregivers and HPs regarding the amount of information they believed had been given. Patients' understanding and awareness of information received conflicted with the HPs' perceptions of patients' understanding and awareness of the information that had been given. HPs tended to underestimate patients' need for information and overestimate patients' understanding and awareness of their prognosis and EoL issues. HPs need to repeatedly check patients' understanding and preferences for information.

Evidence-based recommendations concerning how to discuss dying, life expectancy, and likely future symptoms with patients with a limited life expectancy and their families are lacking. The aim of this systematic review was to review studies regarding prognostic/end-of-life communication with adult patients in the advanced stages of a life-limiting illness and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases up to November 2004. One hundred twenty-three studies met the criteria for the full review, and 46 articles reported on patient/caregiver preferences for content, style, and timing of information. The majority of the research was descriptive. Although there were individual differences, patients/caregivers in general had high levels of information need at all stages of the disease process regarding the illness itself, likely future symptoms and their management, and life expectancy and information about clinical treatment options. Patient and caregiver information needs showed a tendency to diverge as the illness progressed, with caregivers needing more and patients wanting less information. Patients and caregivers preferred a trusted health professional who showed empathy and honesty, encouraged questions, and clarified each individual's information needs and level of understanding. In general, most patients/caregivers wanted at least some discussion of these topics at the time of diagnosis of an advanced, progressive, life-limiting illness, or shortly after. However, they wanted to negotiate the content and extent of this information.

Although there is an understandable emphasis on the side effects of individual medications, the cumulative effects of medications have received little attention in palliative care prescribing. Anticholinergic load reflects a cumulative effect of medications that may account for several symptoms and adverse health outcomes frequently encountered in palliative care. A secondary analysis of 304 participants in a randomised controlled trial had their cholinergic load calculated using the Clinician-Rated Anticholinergic Scale (modified version) longitudinally as death approached from medication data collected prospectively by study nurses on each visit. Mean time from referral to death was 107 days, and mean 4.8 visits were conducted in which data were collected. Relationships to key factors were explored. Data showed that anticholinergic load rose as death approached because of increasing use of medications for symptom control. Symptoms significantly associated with increasing anticholinergic load included dry mouth and difficulty concentrating (P < 0.05). There were also significant associations with increasing anticholinergic load and decreasing functional status (Australiamodified Karnofsky Performance Scale; and quality of life (P < 0.05). This study has documented in detail the longitudinal anticholinergic load associated with medications used in a palliative care population between referral and death, demonstrating the biggest contributor to anticholinergic load in a palliative care population is from symptom-specific medications, which increased as death approached. [ABSTRACT FROM AUTHOR]