Tube feeding, antibiotics, and hospitalization of nursing home residents with end-stage dementia: Perceptions of key medical decision-makers

Lacey, Debra

doi:10.1177/153331750502000407

Cited by 19 publications

(12 citation statements)

References 36 publications

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“…33 The goal of prolonging life is considered inconsistent with the palliative philosophy, and it is even less appropriate in cases of advanced dementia. 7 Nonetheless, these findings confirm the existence of a gap between the recommendations of palliative care philosophy and the positions of doctors 34 and nurses, 35 who seem, at least in Italy, culturally more inclined to prolong life and thus to favor the administration of antibiotics.…”

Section: Typology Of Critical Decisionsmentioning

confidence: 68%

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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Section: Typology Of Critical Decisionsmentioning

confidence: 68%

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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“…This varied greatly from doctors and relatives, to speech and language therapists, dieticians and multidisciplinary teams. Of studies which collected data on who had the most influential role in the decision-making process, 14 studies found one or more of the physicians to be the most influential [35], [36], [42], [44], [49], [52], [57], [58], [61], [65], [71], [74], [84], [94], nine found collaborative decision-making between the relatives or substitute decision-makers and members of the medical team [46], [50], [51], [65], [73], [86], [90], [95], [96], three studies found that the relative or surrogate decision-maker were the most influential or felt they had the final say [41], [59], [97], and one study found that the medical director was the most influential [98]. However, the real-life picture may be more complex than these findings indicate, as one study reveals that although surrogate decision-makers authorised the decision in 92.2% of the cases, a detailed discussion with the patient or surrogate was only documented in one of the 154 cases [59].…”

Section: Resultsmentioning

confidence: 99%

How are Treatment Decisions Made about Artificial Nutrition for Individuals at Risk of Lacking Capacity? A Systematic Literature Review

et al. 2013

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BackgroundWorldwide, the number of individuals lacking the mental capacity to participate in decisions about their own healthcare is increasing. Due to the ageing global population and advancing medical treatments, there are now many more people living longer with neurological disorders, such as dementia, acquired brain injuries, and intellectual disabilities. Many of these individuals have feeding difficulties and may require artificial nutrition. However, little is known about the decision-making process; the evidence base is uncertain and often ethically complex. Using the exemplar of artificial nutrition, the objective of this review is to examine how treatment decisions are made when patients are at risk of lacking capacity.Methods and FindingsWe undertook a systematic review according to PRISMA guidelines to determine who was involved in decisions, and what factors were considered. We searched PubMed, AMED, CINAHL, EMBASE, PsychINFO, and OpenSigle for quantitative and qualitative studies (1990–2011). Citation, reference, hand searches and expert consultation were also undertaken. Data extraction and quality assessment were undertaken independently and in duplicate. We utilised Thomas and Harden’s ‘Thematic Synthesis’ for analysis. Sixty-six studies met inclusion criteria, comprising data from 40 countries and 34,649 patients, carers and clinicians. Six themes emerged: clinical indications were similar across countries but were insufficient alone for determining outcomes; quality of life was the main decision-making factor but its meaning varied; prolonging life was the second most cited factor; patient’s wishes were influential but not determinative; families had some influence but were infrequently involved in final recommendations; clinicians often felt conflicted about their roles.ConclusionsWhen individuals lack mental capacity, decisions must be made on their behalf. Dynamic interactive factors, such as protecting right to life, not unnecessarily prolonging suffering, and individual preferences, need to be addressed and balanced. These findings provide an outline to aid clinical practice and develop decision-making guidelines.

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“…Very few studies have engaged with how carers interact with professionals in the decision-making process, nor have they described what is required for effective communication (Caron et al, 2005b) even though it is clear that how physicians resolve and negotiate patient and family preferences regarding care appears to directly influence patient outcomes (Helton et al, 2006). In the absence of agreed guidelines, and advance care plans, decision making for people with dementia at the end of life is shaped by differences in religious beliefs, professional training, understanding of the disease, what is meant by palliative care, perspectives of other patients, culture and beliefs (Luchins and Hanrahan, 1993;Cavalieri et al, 2002;Hinkka et al, 2002;The Anne Mei, 2002;Lacey, 2005;Haydar et al, 2004;Rurup et al, 2006). Despite discussion and exploration of the feasibility of introducing advance care planning into long term care for people with dementia , we found no studies that evaluated the impact of advanced care directives on the overall approach to end-of-life care and its related outcomes of place of death, treatments received and carer involvement in and satisfaction with the home or care home environment.…”

Section: Decision Making At the End Of Lifementioning

confidence: 99%

End of life care for community dwelling older people with dementia: an integrated review

Goodman

Evans

Wilcock

et al. 2009

Int J Geriat Psychiatry

107

102

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Objective: To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes). Design: An integrated review synthesised the qualitative and quantitative evidence on end-of-life care for community dwelling older people with dementia. English language studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included. A user representative group informed decisions on the breadth of literature used. Each study selected was screened independently by two reviewers using a standardised check list. Results: Sixty eight papers were included. Only 17% (12) exclusively concerned living and dying with dementia at home. Six studies included direct evidence from people with dementia. The studies grouped into four broad categories: Dementia care towards the end of life, palliative symptom management for people with dementia, predicting the approach of death for people with dementia and decision-making. The majority of studies were descriptive. The few studies that developed dementia specific tools to guide end of life care and outcome measures specific to improve comfort and communication, demonstrated what could be achieved, and how much more needs to be done. Conclusions: Research on end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses. There is a need for investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.

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Tube feeding, antibiotics, and hospitalization of nursing home residents with end-stage dementia: Perceptions of key medical decision-makers

Cited by 19 publications

References 36 publications

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

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

How are Treatment Decisions Made about Artificial Nutrition for Individuals at Risk of Lacking Capacity? A Systematic Literature Review

End of life care for community dwelling older people with dementia: an integrated review

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