Critical decisions for older people with advanced dementia: a prospective study in long-term institutions and district home care

Franco Toscani, Jenny T. van der Steen, Silvia Finetti, Fabrizio Giunco, Francesca Pettenati, Daniele Villani, Massimo Monti, Simona Gentile, Lorena Charrier, Paola Di Giulio, End of Life Observatory-Prospective Study on DEmentia Patients Care (EoLO-PSODEC) Research Group, End of Life Observatory-Prospective Study on DEmentia Patients Care EoLO-PSODEC Research Group

Research output: Contribution to journalArticlepeer-review

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.

DESIGN: Prospective cohort study with a follow-up of 6 months.

SETTING: Lombardy Region (NHs) and Reggio-Emilia and Modena Districts (HC), Italy.

PARTICIPANTS: Patients (496 total; 315 in NHs and 181 in HC) with advanced dementia (Functional Assessment Staging Tool score ≥ 7) and expected survival ≥ 2 weeks.

MEASUREMENTS: 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.

Original languageEnglish
JournalJournal of the American Medical Directors Association
Volume16
Issue number6
DOIs
Publication statusPublished - Jun 1 2015

Keywords

  • advanced dementia
  • End of life decisions
  • home care
  • nursing homes

ASJC Scopus subject areas

  • Nursing(all)
  • Medicine(all)
  • Health Policy

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