Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings

Mitchell, Susan L.; Morris, John N.; Park, Pil S.; Fries, Brant E.

doi:10.1089/jpm.2004.7.808

Cited by 124 publications

(150 citation statements)

References 28 publications

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“…1 People with dementia in care homes are more likely to be admitted to hospital with avoidable conditions, stay longer, and are more likely to be readmitted and to die than similar people without dementia. 2 This is in keeping with broader evidence showing that people ABSTRACT with dementia have poorer outcomes associated with hospital admission, 3,4 are more likely to have interventions, [4][5][6] and less likely to be offered palliative care than their counterparts without dementia. 4 Although admission to hospital might offer access to the benefits of modern medicine, those who die in hospital may spend the last days of their life in a noisy, alien environment, cared for by strangers and separated from those who love them or know them.…”

Section: Introductionsupporting

confidence: 61%

The Bromhead Care Home Service: the impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care

et al. 2016

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People with dementia have worse outcomes associated with hospital admission, are more likely to have interventions and are less likely to be offered palliative care than people without dementia. Advance care planning for care home residents has been shown to reduce hospital admissions without increasing mortality. Studies have shown that staff confidence in managing delirium, a common reason for admission, improves with training. A service combining education for care home staff and advance care planning for care home residents with dementia was introduced to care homes in Boston, UK. There were improvements in staff confidence in recognition, prevention, management and knowledge of factors associated with delirium and dysphagia. 92% of carers rated the service >9/10. Admissions fell by 37% from baseline in the first year and 55% in the second and third years. All but one resident died in the preferred place of care.

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Section: Introductionsupporting

confidence: 61%

The Bromhead Care Home Service: the impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care

et al. 2016

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“…38 The HC services considered in this study were not equipped to deliver specialized or intensive treatments. 27 In an older US study, HC patients were less often admitted to the hospital and less often exposed to feeding tubes and IV medications, 39 but those patients were in better health (more independent and with a better cognitive performance score) compared with the patients in our study.…”

Section: Typology Of Critical Decisionsmentioning

confidence: 54%

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Toscani¹,

Steen²,

Finetti³

et al. 2015

Journal of the American Medical Directors Association

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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.

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“…The results of selected studies have been integrated in a recent review, showing considerable unmet needs in families [85]. Through the beginning of 2010 (Box 1, Table 1), at least 45 studies [28,[33][34][35][36][37][38][40][41][42][43]46,47,52,60,61,63,65,66,80,[86][87][88][89][90][91][92][93][94][95][96][97][98][99]110] in another 26 publications [39,44,45,53,54,64,67,69,[111][112][113][114][115]…”

Section: Research Trends In Dementia At the End Of Lifementioning

confidence: 99%

Dying with Dementia: What We Know after More than a Decade of Research

Steen

2010

JAD

224

177

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Abstract. Death with dementia is increasingly common. Although prognostication is difficult, it is an incurable life-limiting illness for which palliative care for the patient is often appropriate. Dementia patients are otherwise at risk of overtreatment with burdensome and possibly non-beneficial interventions and undertreatment of symptoms. Although recent studies indicate encouraging trends of improved palliative care, little evidence supports effectiveness of specific treatments. As of January 2010, at least 45 studies, almost all performed after 2000, have reported on treatment, comfort, symptom burden, and families' satisfaction with care. Over half (25; 56%) of these studies were in US settings, and most were small or retrospective. Few randomized trials and prospective observational studies have been performed so far, but several promising studies have been completed recently or are underway in various countries. Guidelines for care and treatment, still mostly consensus-based, support the benefits of advance care planning, continuity of care, and family and practitioner education. Assessment tools for pain, prognosis, and family evaluations of care have been developed and some have been shown to be effective in clinical practice. With increasing numbers of well-designed, large-scale studies, research in the next decade may result in better evidence-based guidelines and practice.

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Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings

Abstract: Conclusions: Persons dying with advanced dementia admitted to nursing homes have different characteristics compared to those admitted to home care services. Their end-of-life experiences also differ in these two sites of care. However, palliative care was not optimal in either setting.

Cited by 124 publications

References 28 publications

The Bromhead Care Home Service: the impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care

The Bromhead Care Home Service: the impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Dying with Dementia: What We Know after More than a Decade of Research

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