title: Critical decisions for older people with advanced dementia: a prospective study in long-term institutions and district home care.
abstract: OBJECTIVE
  To describe and compare the decisions critical for survival or quality of life [critical decisions (CDs)] made for patients with advanced dementia in nursing homes (NHs) and home care (HC) services.
  
  
  METHODS
  Prospective cohort study with a follow-up of 6 months.
  
  
  METHODS
  Lombardy Region (NHs) and Reggio-Emilia and Modena Districts (HC), Italy.
  
  
  METHODS
  Patients (496 total; 315 in NHs and 181 in HC) with advanced dementia (Functional Assessment Staging Tool score ≥ 7) and expected survival ≥ 2 weeks.
  
  
  METHODS
  At baseline, the patients' demographic data, date of admission and of dementia diagnosis, type of dementia, main comorbidities, presence of pressure sores, ongoing treatments, and current prescriptions were abstracted from clinical records. At baseline and every 15 days thereafter, information regarding the patients' general condition and CDs (deemed critical by the doctor or team) was collected by an interview with the doctor. For each CD, the physician reported the problem that led to the decision, that was eventually made, the purpose of the decision, whether the decision had been discussed with and/or communicated to the family, who made the final decision, whether the decision was maintained after 1 week, whether it corresponded to what the doctor would have judged appropriate, and the expected survival of the patient (≤ 15 days).
  
  
  RESULTS
  For 267 of the 496 patients (53.8%; 60.3% in NHs and 42.5% at home), 644 CDs were made; for 95 patients, more than 1 CD was made. The problems that led to a CD were mainly infections (respiratory tract and other infections; 46.6%, 300/644 CDs); nutritional/hydration problems (20.6%; 133 CDs); and the worsening of a pre-existing disease (9.3%; 60 CDs). The most frequent type of decision concerned the prescription of antibiotics (overall 41.1%, 265/644; among NH patients 44.6%, 218/488; among HC patients, 30.2%, 47/156). The decision to hospitalize the patient was more frequently reported for HC than NH patients (25.5% vs 3.1%). The most frequent purposes of the CDs in both settings were reducing symptoms or suffering (more so in NHs; 81.1% vs 57.0% in HC) and prolonging survival (NH 27.5%; HC 23.1%; multiple purposes were possible). For 26 decisions (3.8%), the purpose was to ease death or not to prolong life.
  
  
  CONCLUSIONS
  Decisions critical for the survival or quality of life of patients with advanced dementia were made for approximately one-half of the patients during a 6-month time frame, and such decisions were made more frequently in NHs than in HC. HC patients were more frequently hospitalized, and a sizeable minority of these patients were treated with the goal of prolonging survival. Italian patients with advanced dementia may benefit from the implementation of palliative care principles, and HC patients may benefit from the implementation of measures to avoid hospitalizing patients near the end of life.
authors.affiliation: Lino Maestroni Foundation, Palliative Medicine Research Institute, Cremona, Italy.
authors.forename: Franco
authors.initials: F
authors.lastname: Toscani
authors.affiliation: Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.affiliation: Lino Maestroni Foundation, Palliative Medicine Research Institute, Cremona, Italy.
authors.forename: Silvia
authors.initials: S
authors.lastname: Finetti
authors.affiliation: Department of Health and Social Services Polo Lombardia 2, Don Carlo Gnocchi Foundation ONLUS, Milano, Italy.
authors.forename: Fabrizio
authors.initials: F
authors.lastname: Giunco
authors.affiliation: Lino Maestroni Foundation, Palliative Medicine Research Institute, Cremona, Italy.
authors.forename: Francesca
authors.initials: F
authors.lastname: Pettenati
authors.affiliation: Neuro-Rehabilitation and Alzheimer Disease Evaluation Unit, "Figlie di San Camillo" Hospital, Cremona, Italy.
authors.forename: Daniele
authors.initials: D
authors.lastname: Villani
authors.affiliation: Geriatric Institute "Pio Albergo Trivulzio," Milano, Italy.
authors.forename: Massimo
authors.initials: M
authors.lastname: Monti
authors.affiliation: Rehabilitation and Alzheimer Disease Evaluation Unit, Ancelle della Carità Hospital, Cremona, Italy.
authors.forename: Simona
authors.initials: S
authors.lastname: Gentile
authors.affiliation: Department of Public Health and Pediatrics, University of Turin, Turin, Italy.
authors.forename: Lorena
authors.initials: L
authors.lastname: Charrier
authors.affiliation: Department of Public Health and Pediatrics, University of Turin, Turin, Italy and IRCCS Mario Negri Institute, Milan, Italy. Electronic address: digiulio@marionegri.it.
authors.forename: Paola
authors.initials: P
authors.lastname: Di Giulio
mesh_terms: D000368:Aged; D015897:Comorbidity; D003657:Decision Making; D003704:Dementia / Q000453:epidemiology / Q000451:nursing*; D003710:Demography; D005260:Female; D005500:Follow-Up Studies; D015577:Geriatric Assessment; D006699:Home Care Services; D006801:Humans; D007407:Interviews as Topic; D007558:Italy / Q000453:epidemiology; D008134:Long-Term Care; D008297:Male; D011446:Prospective Studies; D011788:Quality of Life; D016019:Survival Analysis
keywords: End of life decisions; advanced dementia; home care; nursing homes