Caregivers' perceived adequacy of support in end-stage lung disease: results of a population survey.

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.

Collaborating or co-existing: a survey of attitudes of medical oncologists toward specialist palliative care.

Patients with advanced cancer often have complex care needs requiring collaboration between medical oncology and palliative care providers. Little is known about how effective and acceptable such collaboration is to medical oncologists. Attitudes of Australian medical oncologists toward collaboration with specialist palliative care services were investigated using a Web-based survey. Descriptive statistics and attitude indices were calculated and a thematic content analysis performed. One hundred and fifteen respondents (78 medical oncologists, 37 trainees) completed the survey (response rate 30.3%). Positive attitudes toward specialist palliative care involvement were expressed with most respondents preferring concurrent rather than sequential models of care (94.8%, n = 109). Reported barriers to collaboration included reluctance for referral by patients (minor 60.9%, n = 70; major 8.7%, n = 10) or families (minor 67%, n = 77; major 7%, n = 8), a lack of inpatient beds (minor 27%, n = 31; major 34.8%, n = 40) and inadequate resources for specialist palliative care to take some referrals (minor 30.4%, n = 35; major 30.4%, n = 35). There was no difference in attitude indices for those who had completed a palliative care rotation during their training (33%, n = 38) and those who had not. Suggestions for improvement in collaboration focused around four areas - improved resources, improved multidisciplinary links, mutual respect and understanding, and consistency in service provision. This study is the first to specifically investigate the views of Australian medical oncologists toward collaboration with specialist palliative care. While positive attitudes have been expressed, identified barriers to collaboration need attention.

Deciding what information is necessary: do patients with advanced cancer want to know all the details?

Communicating effectively with patients who have advanced cancer is one of the greatest challenges facing physicians today. Whilst guiding the patient through complex diagnostic and staging techniques, treatment regimens and trials, the physician must translate often imprecise or conflicting data into meaningful personalized information that empowers the patient to make decisions about their life and body. This requires understanding, compassion, patience, and skill. This narrative literature review explores current communication practices, information preferences of oncology patients and their families, and communication strategies that may assist in these delicate interactions. Overwhelmingly, the literature suggests that whilst the majority of patients with advanced cancer do want to know their diagnosis and receive detailed prognostic information, this varies not only between individuals but also for a given individual over time. Barriers to the delivery and understanding of information exist on both sides of the physician-patient relationship, and family dynamics are also influential. Despite identifiable trends, the information preferences of a particular patient cannot be reliably predicted by demographic, cultural, or cancer-specific factors. Therefore, our primary recommendation is that the physician regularly asks the patient what information they would like to know, who else should be given the information and be involved in decision making, and how that information should be presented.

Advances in the pharmacological management of breathlessness.

PURPOSE OF REVIEW: To explore advances in the pharmacological treatment of refractory breathlessness and the physiological evidence for treatments. RECENT FINDINGS: The evidence for the role of oral and parenteral opioids in the reduction of breathlessness continues to strengthen from individual studies and from systematic reviews. Importantly, more data are emerging about a lack of lowering in oxygenation or carbon dioxide retention with opioid therapy. In healthy volunteers and those with refractory dyspnoea, nebulized frusemide appears to be worthy of further investigation with adequately powered phase III studies. SUMMARY: Opioids prescribed regularly can help to predictably and safely reduce breathlessness for people with a range of end-stage illnesses.

Comfort in the last 2 weeks of life: relationship to accessing palliative care services.

INTRODUCTION: Specialised palliative care services (SPCS) aim to address the needs of patients and caregivers confronting life-limiting illnesses but only half of the potential cohort are referred. Randomised controlled trials of SPCS provision can no longer be ethically justified so there is a need to develop new methods to evaluate the net impact of SPCS for the whole community, not just for those who access SPCS. The aim of this study was to assess whether perceived comfort in the last 2 weeks of life was associated with accessing SPCS. METHODS: This study utilised a whole-of-population random survey (n = 4,366) in South Australia. A total of 802 respondents had someone close to them die within the last 5 years due to a terminal illness, and they had the complete data. A subsequent question was asked whether SPCS had been accessed. Perceived comfort levels for those who had used SPCS were compared with those who did not by using stereotype logistic regression, weighted to a standardised population. RESULTS: Higher levels of comfort of the deceased having been assessed 'very comfortable' was associated with the use of SPCS (p = 0.04; odds ratio, 1.78; 95% confidence interval, 1.02-3.08). For people who accessed SPCS, 13.3% were reported as 'very comfortable' compared with 8.0% without SPCS. Almost one half of respondents (48.4%) reported that the deceased was considered 'uncomfortable' or 'very uncomfortable', irrespective of SPCS access. DISCUSSION: While this study provides further incremental evidence of benefit from access to SPCS, there is much that still needs to be done to improve care for the whole community at the end of life.