title: Breathlessness During the Last Week of Life in Palliative Care: An Australian Prospective, Longitudinal Study.
abstract: Breathlessness is a major cause of suffering and distress, and little is known about the trajectory of breathlessness near death.
  
  
  
  To determine the trajectory and clinical-demographic factors associated with breathlessness in the last week of life in patients receiving specialist palliative care.
  
  
  
  This was a prospective, longitudinal cohort study using national data on specialist palliative care from the Australian Palliative Care Outcomes Collaboration. We included patients in the Australian Palliative Care Outcomes Collaboration who died between July 1, 2013 and June 30, 2014 with at least one measurement of breathlessness on a 0-10 numerical rating scale in the week before death. The trajectory and factors associated with breathlessness were analyzed using multivariate random-effects linear regression.
  
  
  
  A total 12,778 patients from 87 services (33,404 data points) were analyzed. The average observed breathlessness was 2.1 points and remained constant over time. Thirty-five percent reported moderate to severe distress (numerical rating scale ≥4) at some time in their last week. Factors associated with higher breathlessness were younger age, male gender, cardiopulmonary involvement, concurrent fatigue, nausea, pain, sleeping problems, higher Australia-modified Karnofsky Performance Status, and clinical instability in the multivariate analysis. Respiratory failure showed the largest association (mean adjusted difference 3.1 points; 95% confidence interval, 2.8-3.4).
  
  
  
  Although breathlessness has been reported to worsen in the last months, the mean severity remained stable in the final week of life. In specialized palliative care, one in three people experienced significant breathlessness especially in respiratory disease.
authors.affiliation: Discipline, Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia; Division of Respiratory Medicine & Allergology, Department of Clinical Sciences, Lund University, Lund, Sweden. Electronic address: pmekstrom@gmail.com.
authors.forename: Magnus
authors.initials: M
authors.lastname: Ekström
authors.affiliation: Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia.
authors.forename: Samuel F
authors.initials: SF
authors.lastname: Allingham
authors.affiliation: Palliative Care Outcomes Collaboration, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia.
authors.forename: Kathy
authors.initials: K
authors.lastname: Eagar
authors.affiliation: School of Nursing, Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, Queensland, Australia.
authors.forename: Patsy
authors.initials: P
authors.lastname: Yates
authors.affiliation: The Cancer and Palliative Care Research and Evaluation Unit, School of Surgery, The University of Western Australia, Perth, Western Australia, Australia.
authors.forename: Claire
authors.initials: C
authors.lastname: Johnson
authors.affiliation: Discipline, Palliative and Supportive Services, Flinders University, Adelaide, South Australia, Australia.
authors.forename: David C
authors.initials: DC
authors.lastname: Currow
mesh_terms: D000367:Age Factors; D000368:Aged; D001315:Australia / Q000453:epidemiology; D018450:Disease Progression; D004417:Dyspnea / Q000453:epidemiology* / Q000628:therapy*; D005221:Fatigue / Q000453:epidemiology; D005260:Female; D006801:Humans; D016014:Linear Models; D008137:Longitudinal Studies; D008297:Male; D015999:Multivariate Analysis; D010146:Pain / Q000453:epidemiology; D010166:Palliative Care; D011446:Prospective Studies; D012131:Respiratory Insufficiency / Q000453:epidemiology; D012307:Risk Factors; D012720:Severity of Illness Index; D012737:Sex Factors; D012893:Sleep Wake Disorders / Q000453:epidemiology; D013727:Terminal Care
keywords: Dyspnea; cohort studies; mortality; palliative care; respiratory insufficiency; risk factors; terminal care