a From Health Behaviour Research Collaborative, School of Medicine and Public Health, The University of Newcastle, Callaghan; Hunter Medical Research Institute, New Lambton Heights; Department of Medical Oncology, Calvary Mater Newcastle, Waratah; Clinical Ethics and Health Law, The University of Newcastle, Callaghan; and Clinical Research Design and Statistics Support Unit, Hunter Medical Research Institute, New Lambton Heights, Australia.
Background: Helping people achieve their preferred location of care is an important indicator of quality end-of-life (EOL) care. Using a sample of Australian medical oncology outpatients, this study examined (1) their preferred location of EOL care; (2) their perceived benefits and worries of receiving care in that location; (3) the percentage who had discussed preferences with their doctor and/or support person; and (4) whether they wanted their doctor to ask them where they wanted to die. Methods: Adults with a confirmed diagnosis of cancer were approached between September 2015 and January 2016 in the waiting room of an Australian oncology outpatient clinic. Consenting participants completed a home-based pen-and-paper survey indicating preferred location of care, perceived benefits and worries of that location, whether they had discussed preferences with their doctors, and whether they were willing to be asked about their preferences. Results: A total of 203 patients returned the survey (47% of those eligible). Less than half preferred to be cared for at home (47%), 34% preferred a hospice/palliative care unit, and 19% preferred the hospital. Common benefits and worries associated with locations included perceived burden on others, familiarity of environment, availability of expert medical care, symptom management, and likelihood of having wishes respected. More patients had discussed preferences with their support persons (41%) than doctors (7%). Most wanted a doctor to ask them about preferred location of care (87%) and thought it was important to die in the location of their choice (93%). Conclusions: Patients were willing to have clinicians to ask them where they wanted to die, although few had discussed their preferences with doctors. Although home was the most preferred location for many patients, the overall variation suggests that clinicians should adopt a systematic approach to eliciting patient preferences.
Author contributions:Study concept and design: Waller, Sanson-Fisher, Zdenkowski, Douglas. Patient recruitment: Zdenkowski, Douglas. Data acquisition: Waller, Walsh. Data analysis and interpretation: Hall. Manuscript preparation: All authors.
Correspondence: Amy Waller, PhD, Health Behaviour Research Collaborative, The University of Newcastle, Hunter Medical Research Institute, Callaghan NSW 2308, Australia. E-mail: email@example.com