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 (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 co-morbidities, 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 via interview with the doctor. For each CD, the physician reported the problem that led to the decision, 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 one 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 one 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 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 5 palliative care principles, and HC patients may benefit from the implementation of measures to avoid hospitalizing patients near the end of life.

The Impact of Nursing Homes Staff Education on End-of-Life Care in Residents With Advanced Dementia: A Quality Improvement Study

“…In the Lombardy Region, accredited NHs have their own medical and nursing staffs with a law-defined ratio of $901 minutes/week of care per patient 18 and may be defined as ''skilled NHs.'' Out of a network of 34 NHs, 19 29 (number of beds per NH ranged from 40 to 714) agreed to participate in the present quality improvement program. Their staff were informed that an audit of clinical records would be made before and after they attended an educational intervention based on a lecture and case discussion, but they were not told the specific content of the assessments.…”

Changes in Care Goals and Treatment Orders Around the Occurrence of Health Problems and Hospital Transfers in Dementia: A Prospective Study

“…Moreover, our study, like other studies, suggests that intake problems are a relevant trigger for discussions and an important signal of a worsening condition. 17,21,33,34 Although infection of the respiratory system may lead to critical decisions about treatment, 23 pneumonia may have been perceived as an intercurrent and reversible disease, unlike intake problems in patients with dementia.…”

“…Establishing care plans may be influenced by culture, organizational models, and healthcare settings . An environment with physicians specialized in dementia and advance care planning who are frequently present in the long‐term care facilities may promote the development of care plans .…”

“…6,19,20 Establishing care plans may be influenced by culture, organizational models, and healthcare settings. 2,[21][22][23] An environment with physicians specialized in dementia and advance care planning who are frequently present in the long-term care facilities may promote the development of care plans. 2,[23][24][25] In this type of setting, we found that more than half of patients with dementia had a palliative care goal shortly after admission to long-term care, 26 and 85% had documented treatment orders during nursing home stay.…”

“…2,[21][22][23] An environment with physicians specialized in dementia and advance care planning who are frequently present in the long-term care facilities may promote the development of care plans. 2,[23][24][25] In this type of setting, we found that more than half of patients with dementia had a palliative care goal shortly after admission to long-term care, 26 and 85% had documented treatment orders during nursing home stay. 20 However, no longitudinal data, and no data about care goals and treatment orders around the occurrence of expected health problems have been published so far.…”