title: Palliative care during the final week of life of older people in nursing homes: A register-based study.
abstract: Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.
  
  
  
  Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.
  
  
  
  The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.
  
  
  
  There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.
authors.affiliation: Department of Health Care Sciences,Ersta Sköndal University College,Stockholm,Sweden.
authors.forename: Jonas
authors.initials: J
authors.lastname: Smedbäck
authors.affiliation: Institute of Health and Care Sciences, The Sahlgrenska Academy and University of Gothenburg Center for Person-Centered Care,Gothenburg,Sweden.
authors.forename: Joakim
authors.initials: J
authors.lastname: Öhlén
authors.affiliation: Department of Health Care Sciences/Palliative Research Center,Ersta Sköndal University College,Stockholm,Sweden.
authors.forename: Kristofer
authors.initials: K
authors.lastname: Årestedt
authors.affiliation: Department of Health Care Sciences/Palliative Research Center,Ersta Sköndal University College,Stockholm,Sweden.
authors.forename: Anette
authors.initials: A
authors.lastname: Alvariza
authors.affiliation: The Institute for Palliative Care,Faculty of Medicine,Department of Clinical Sciences,Oncology,Lund University,Lund,Sweden.
authors.forename: Carl-Johan
authors.initials: CJ
authors.lastname: Fürst
authors.affiliation: Department of Health Care Sciences/Palliative Research Center,Ersta Sköndal University College,Stockholm,Sweden.
authors.forename: Cecilia
authors.initials: C
authors.lastname: Håkanson
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D003221:Confusion / Q000150:complications; D004417:Dyspnea / Q000150:complications; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009325:Nausea / Q000150:complications; D009735:Nursing Homes / Q000458:organization & administration / Q000592:standards / Q000706:statistics & numerical data; D010146:Pain / Q000150:complications; D010166:Palliative Care / Q000379:methods / Q000592:standards / Q000706:statistics & numerical data; D015995:Prevalence; D011787:Quality of Health Care / Q000592:standards; D011788:Quality of Life / Q000523:psychology; D012042:Registries / Q000706:statistics & numerical data; D013548:Sweden; D013577:Syndrome; D013727:Terminal Care / Q000379:methods* / Q000592:standards / Q000706:statistics & numerical data; D013997:Time Factors
keywords: End of life; Nursing home; Older people; Palliative care; Quality of care; Symptom relief