Physical Symptoms at the Time of Dying Was Diagnosed: A Consecutive Cohort Study to Describe the Prevalence and Intensity of Problems Experienced by Imminently Dying Palliative Care Patients by Diagnosis and Place of Care

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Journal Article
Journal of Palliative Medicine, 2016, 19 (12), pp. 1288 - 1295
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© Copyright 2016, Mary Ann Liebert, Inc. 2016. Objective: The aim of this work was to analyze routine assessments recorded, when a patient was documented as likely to die in hours to days, to determine the prevalence, intensity, and associations of physical symptoms. Background: Although death inevitably occurs, very little prospective data describe at population level the physical symptoms confronting imminently dying people. Methods: Using prospectively collected data from participating palliative care services in the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2014, factors associated with worse symptom experiences were explored using logistic regression modeling. Results: The experiences of 18,975 patients who died after being identified as imminently terminal were analyzed, with 75% (n = 14,238) of these being cancer deaths. Seventy percent (n = 13,051) occurred in a palliative care unit, 8.7% (n = 1657) in an acute hospital with palliative care support, and 22.5% (n = 4266) at home. More than half were assessed as experiencing acceptable symptom control especially those with nonmalignant disease. The notable exception was breathing problems, where compared to cancer patients, those with nonmalignant disease were 34% more likely to experience distressing breathlessness (odds ratio 1.34; 95% confidence interval 1.23-147). Regardless of the cause, deaths in a community setting were more likely to be complicated by more severe symptoms with the exception of breathlessness, where those dying in acute hospitals were most likely to be assessed as requiring further help. Discussion: The terminal phase is perceived as a time where the majority will experience distressing symptoms, but this work suggests a contrary view. However, there did seem to be a detrimental effect depending on place of care with more significant problems recorded when people were dying at home. More work is needed to clarify this given the current push for more home deaths.
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