title: Comfort goal of care and end-of-life outcomes in dementia: A prospective study.
abstract: BACKGROUND
  Many people with dementia die in a nursing home. A comfort care goal may be beneficial. Little research has examined the relationship between care goals and outcome.
  
  
  OBJECTIVE
  To investigate whether family satisfaction with end-of-life care and quality of dying is associated with whether or not dementia patients have a comfort goal shortly after admission.
  
  
  METHODS
  Prospective data collection from 28 long-term care facilities (the Dutch End of Life in Dementia study). We included 148 patients who died after prospective follow-up. Main outcomes were family satisfaction (End-of-Life in Dementia-Satisfaction with Care scale; range: 10-40) and quality of dying (End-of-Life in Dementia-Comfort Assessment in Dying; range: 14-42). We performed generalized estimating equations regression analyses to analyze whether these outcomes are associated with a comfort goal established shortly after admission compared with another or no care goal as reported by the physician.
  
  
  RESULTS
  Families of patients were more satisfied with end-of-life care when a comfort goal was established shortly after admission. We found this pattern only for patients who died within 6 months of admission (adjusted b: 4.5; confidence interval: 2.8, 6.3 vs -1.2; confidence interval: -3.0, 0.6 for longer stay). For quality of dying, no such association was found.
  
  
  CONCLUSIONS
  We found that family satisfaction with care is related to a comfort care goal shortly after admission, but quality of dying did not. Establishing a comfort goal at an early stage may be important to the family. Advance care planning interventions should be studied for their effects on patient and family outcome.
authors.affiliation: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Mirjam C
authors.initials: MC
authors.lastname: van Soest-Poortvliet
authors.affiliation: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands j.vandersteen@vumc.nl.
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.affiliation: Department of Epidemiology and Biostatistics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Henrica C W
authors.initials: HC
authors.lastname: de Vet
authors.affiliation: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Cees M P M
authors.initials: CM
authors.lastname: Hertogh
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgium.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Bregje D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D003704:Dementia / Q000451:nursing*; D005190:Family / Q000523:psychology; D005260:Female; D006040:Goals; D017051:Hospice Care / Q000592:standards; D006801:Humans; D008134:Long-Term Care / Q000592:standards; D008297:Male; D009426:Netherlands; D009735:Nursing Homes; D010166:Palliative Care / Q000592:standards*; D017060:Patient Satisfaction; D011446:Prospective Studies; D011787:Quality of Health Care; D011788:Quality of Life; D012044:Regression Analysis; D013727:Terminal Care / Q000592:standards*
keywords: Palliative care; advance care planning; dementia; long-term-care; nursing homes