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

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.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.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.Caregivers of people at the end-of-life face emotional, social and financial sequelae. At a population level, there is the potential for poorer health outcomes including morbidity and mortality. Understanding the pressures on caregivers may help to develop interventions that improve these outcomes [1,2].Quantitative [3-5] and qualitative [6,7] studies of patients with end-stage organ failure have described the needs of this population. The trajectory of end-stage lung disease (ESLD), whether obstructive or restrictive, is one of inexorable decline punctuated by disease exacerbations. For caregivers of ESLD patients, there is unc