The last week of life of nursing home residents with advanced dementia: a retrospective study.

BACKGROUND: Barriers to palliative care still exist in long-term care settings for older people, which can mean that people with advanced dementia may not receive of adequate palliative care in the last days of their life; instead, they may be exposed to aggressive and/or inappropriate treatments. The aim of this multicentre study was to assess the clinical interventions and care at end of life in a cohort of nursing home (NH) residents with advanced dementia in a large Italian region. METHODS: This retrospective study included a convenience sample of 29 NHs in the Lombardy Region. Data were collected from the clinical records of 482 residents with advanced dementia, who had resided in the NH for at least 6 months before death, mainly focusing on the 7 days before death. RESULTS: Most residents (97.1%) died in the NH. In the 7 days before death, 20% were fed and hydrated by mouth, and 13.4% were tube fed. A median of five, often inappropriate, drugs were prescribed. Fifty-seven percent of residents had an acknowledgement of worsening condition recorded in their clinical records, a median of 4 days before death. CONCLUSIONS: Full implementation of palliative care was not achieved in our study, possibly due to insufficient acknowledgement of the appropriateness of some drugs and interventions, and health professionals' lack of implementation of palliative interventions. Future studies should focus on how to improve care for NH residents.

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

CONTEXT: End-of-life care in nursing homes (NHs) needs improvement. We carried out a study in 29 NHs in the Lombardy Region (Italy). OBJECTIVES: The objective of this study was to compare end-of-life care in NH residents with advanced dementia before and after an educational intervention aimed to improving palliative care. METHODS: The intervention consisted of a seven-hour lecture, followed by two 3-hour meetings consisting of case discussions. The intervention was held in each NH and well attended by NH staff. This multicenter, comparative, observational study included up to 20 residents with advanced dementia from each NH: the last 10 who died before the intervention (preintervention group, 245 residents) and the first 10 who died at least three months after the intervention (postintervention group, 237 residents). Data for these residents were collected from records for 60 days and seven days before death. RESULTS: The use of "comfort hydration" (<1000 mL/day subcutaneously) tended to increase from 16.9% to 26.8% in the postintervention group. The number of residents receiving a palliative approach for nutrition and hydration increased, though not significantly, from 24% preintervention to 31.5% postintervention. On the other hand, the proportion of tube-fed residents and residents receiving intravenous hydration decreased from 15.5% to 10.5%, and from 52% to 42%, respectively. Cardiopulmonary resuscitations decreased also from 52/245 (21%) to 18/237 (7.6%) cases (P = 0.002). CONCLUSION: The short educational intervention modified some practices relevant to the quality of end-of-life care of advanced dementia patients in NHs, possibly raising and reinforcing beliefs and attitudes already largely present.

Pneumonia in Nursing Home Patients With Advanced Dementia: Decisions, Intravenous Rehydration Therapy, and Discomfort.

BACKGROUND: Comfort may be an appropriate goal in advanced dementia. Longitudinal studies on physician decision-making and discomfort assessed by direct observation are rare, and intravenous rehydration therapy is controversial. METHODS: To assess treatment decisions and discomfort in patients with advanced dementia and pneumonia and to compare by intravenous rehydration therapy, we used data from the observational multicenter Italian End of Life Observatory-Prospective Study On DEmentia patients Care. We analyzed 109 episodes of pneumonia, which involved decisions in 77 nursing home patients with Functional Assessment Staging Tool stage 7. We assessed decisions, decision-making, and treatments every fortnight. Trained observers assessed discomfort with the Discomfort Scale-Dementia Alzheimer Type (DS-DAT). RESULTS: Most decisions referred to treatment with antibiotics (90%; 98 of 109) and intravenous rehydration therapy (53%; 58 of 109), but hospitalization was rare (1%). Selecting decisions with antibiotics, with rehydration therapy, the prognosis was more frequently <15 days (34% vs 5% without rehydration therapy; P = .001), and a goal to reduce symptoms/suffering was more common (96% vs 74%; P = .005) while there was no difference in striving for life prolongation (a minority). With rehydration therapy, the decision was more often discussed with family rather than communicated only. Mean DS-DAT scores over time proximate to the first decision ranged between 9.2 and 10.5. CONCLUSIONS: Italian nursing home patients with advanced dementia and pneumonia frequently received invasive rehydration therapy in addition to antibiotics, however, mostly with a palliative intent. Discomfort was high overall and symptom relief may be improved. Relations between invasive rehydration therapy and discomfort need further study.

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

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.

Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe.

BACKGROUND: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. METHODS: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, The Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. RESULTS: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. CONCLUSIONS: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.