Article

Fact Box decision support tools reduce decisional conflict about antibiotics for pneumonia and artificial hydration in advanced dementia: a randomized controlled trail

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Abstract

Background: fact Boxes are decision support tools that can inform about treatment effects. Objectives: to test whether Fact Box decision support tools impacted decisional conflict, knowledge and preferences about the use of antibiotics and artificial hydration in advanced dementia. Design: randomized controlled trial. Setting: Swiss-German region of Switzerland. Subjects: two hundred thirty-two participants (64 physicians, 100 relatives of dementia patients, 68 professional guardians) randomly allocated to intervention (N = 114) or control (N = 118). Intervention: two-page Fact Box decision support tools on antibiotics for pneumonia and artificial hydration in advanced dementia (at 1-month). Methods: participants were mailed questionnaires at baseline and one month later that asked questions about treatments based on hypothetical scenarios. The primary outcome was change in decisional conflict (DCS-D; range 0 < 100) about treatment decisions. Secondary outcomes included knowledge about treatments (range 0 < 7) and preferences to forego treatments. Results: participants were: mean age, 55.6 years; female, 62.8%. Relative to control participants, intervention participants experienced less decisional conflict about using antibiotics (unstandardized beta (b) = -8.35, 95% Confidence Interval (CI), -12.43, -4.28) and artificial hydration (b = -6.02, 95% CI, -9.84, -2.20) at 1-month compared to baseline. Intervention participants displayed greater knowledge about the use of antibiotics (b = 2.24, 95% CI, 1.79, 2.68) and artificial hydration (b = 3.01, 95% CI, 2.53, 3.49), and were significantly more likely to prefer to forego antibiotics (odds ratio, 2.29, 95% CI, 1.08, 4.84) but not artificial hydration. Conclusions: fact Box decision support tools reduced decisional conflict, increased knowledge and promoted preferences to forego antibiotics in advanced dementia among various decision-makers. Trial registration: FORSbase (12091).

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... Each of the included studies emphasized the importance of conversations between residents, families, and HCPs for aligning goals of care, aiding in the shared decision-making process, and optimizing the quality of decisions made. Formal documents, such as advance directives or advance care plans, were recommended for promoting resident autonomy and involvement in treatment decisions [43][44][45][46][47][48][49][50][51][52][53][54][55][56][57]. Care conferences were identified as key opportunities for more formal conversations, and regular informal conversations were equally important opportunities for HCPs to communicate changes in a resident's health and to clarify goals of care with residents and families [43]. ...
... In fact, tube feedings were perceived by staff and families alike as providing nourishment and care, despite the lack of evidence for a clear and consistent benefit to residents [50,53,55]. With the use of resources to support decisionmaking, carers had increased knowledge about treatments [46,50,51,53], significantly better decisional capacity [45], reduced decisional conflict [49][50][51]53] and ultimately were more likely to avoid unnecessary or burdensome interventions, including tube feeding [50,53]. Such resources prompted and provided frameworks for conversations and presented unequivocal information about treatments, which some equated to myth-busting, making it easier to arrive at a decision. ...
... In fact, tube feedings were perceived by staff and families alike as providing nourishment and care, despite the lack of evidence for a clear and consistent benefit to residents [50,53,55]. With the use of resources to support decisionmaking, carers had increased knowledge about treatments [46,50,51,53], significantly better decisional capacity [45], reduced decisional conflict [49][50][51]53] and ultimately were more likely to avoid unnecessary or burdensome interventions, including tube feeding [50,53]. Such resources prompted and provided frameworks for conversations and presented unequivocal information about treatments, which some equated to myth-busting, making it easier to arrive at a decision. ...
Article
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Resources are needed to aid healthcare providers and families in making end-of-life nutrition care decisions for residents living in long-term care settings. This scoping review aimed to explore what is reported in the literature about resources to support decision-making at the end of life in long-term care. Four databases were searched for research published from 2003 to June 2023. Articles included peer-reviewed human studies published in the English language that reported resources to support decision-making about end-of-life nutrition in long-term care settings. In total, 15 articles were included. Thematic analysis of the articles generated five themes: conversations about care, evidence-based decision-making, a need for multidisciplinary perspectives, honouring residents’ goals of care, and cultural considerations for adapting resources. Multidisciplinary care teams supporting residents and their families during the end of life can benefit from resources to support discussion and facilitate decision-making.
... They are developed in a multi-stage process, and their individual elements are tested and adapted where possible (33). Several experiments have shown that fact boxes support informed decisions by improving for example risk perception, short-term knowledge/knowledge recall, comprehension (30,(34)(35)(36)(37). ...
... Primary HYP a) We hypothesise that compared to standard vaccine communication, the implementation of fact boxes in medical practices and outreach work will lead to higher vaccination knowledge. A number of studies have shown that fact boxes improve short-term knowledge and recall and comprehension (30,(34)(35)(36)(37), enabling people to weigh the bene ts and harms of an intervention, and b) Because knowledge is a component of informed choice and attitudes about vaccines' bene t-harm ratios are not biased by the presentation of a vaccine fact box (30), we hypothesise further that compared to standard vaccine communication, the implementation of fact boxes in medical practices and outreach work will lead to more vaccination intentions that are in line with attitudes and vaccination knowledge (informed vaccination intentions; see the section outcomes for operationalisation). ...
... Review that evidence-based tools aimed at enabling informed decision making have the potential to increase patient involvement (22). c) We suggest that implementation of fact boxes do decrease decisional con ict, as a study (35) found that, compared with controls, participants who received fact boxes experienced less decisional con ict about antibiotic use (unstandardised beta (b) = -8.35, 95% con dence interval (CI), -12.43, -4.28) and ...
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Background Evidence-based fact boxes have been shown to support informed decision-making. However, few studies have analysed how the boxes support decision-making in different social groups. Further, it is unclear whether fact boxes promote informed and shared decision making equally when implemented by health educators (HE) in different settings. Hence, there is a risk that fact boxes will only help less disadvantaged people to make informed health decisions. The aim of our study is to assess whether fact boxes can help people from different social groups make informed decisions about COVID-19 and influenza vaccination, and whether they contribute to reducing inequities in health care. Methods In a multi-centre cluster randomised controlled trial, HE from usual care (e.g. doctors) and outreach work (e.g. from social services) in Germany will be recruited. HE who are randomized to receive the intervention will receive a flyer with a QR code and a link to an online survey to pass on to those who are about to make a vaccination decision. The back of the flyer contains an evidence-based fact box about COVID-19 or the influenza vaccine, which can be used to inform. HE who are randomized to control will receive the flyer without the fact box. The flyer and online study will be available in Arabic, German, Turkish and Russian language. The primary outcome is informed vaccination intention, based on vaccination knowledge, attitudes, vaccination intentions and behaviour. Secondary outcomes include risk perception, decisional conflict and shared decision making. The statistical analysis plan includes the selection of appropriate measures of effect size, sample size calculation, and significance testing. Discussion Failing to consider inequalities when developing and evaluating interventions that influence health decisions - such as evidence-based health information - exacerbates health inequities. The aim of our study is to find out whether evidence-based fact boxes developed with an equity lens work well in different settings where health communication takes place. The results will help determine if and how fact boxes can be used to improve health care in and outside of traditional primary care structures, especially for disadvantaged groups, and will thus provide valuable insights into advancing health care equity. Trial registration: clinicaltrials.gov (registered on 29 September 2023, not yet published)
... These are summarized in Table 5 Other studies have examined separate approaches to support surrogate decision makers for PLwD. [49][50][51]58 One example is 'Fact Boxes' 49 which present factual information to support decision making for specific decisions. These were evaluated using hypothetical scenarios meaning their effectiveness in in real decision-making contexts cannot be established. ...
... These are summarized in Table 5 Other studies have examined separate approaches to support surrogate decision makers for PLwD. [49][50][51]58 One example is 'Fact Boxes' 49 which present factual information to support decision making for specific decisions. These were evaluated using hypothetical scenarios meaning their effectiveness in in real decision-making contexts cannot be established. ...
... These were evaluated using hypothetical scenarios meaning their effectiveness in in real decision-making contexts cannot be established. 49 Paralleling the included study from Hanson et al 41 the study from Sampson et al, 50 aimed to assess an intervention designed to support carers to produce ACP following unplanned hospital admissions for ...
Article
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Background Dementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process. Review Question What interventions are effective in improving shared decision making or surrogate decision making on the health care of PLwD? Methods A narrative systematic review of existing literature was conducted. Seven databases, grey literature and key journals were searched. After exclusion by title, abstracts then full texts were reviewed collaboratively to manage any disagreements. Results Eight studies met the inclusion criteria. Two articles, including one RCT, evaluated decision aids regarding the use of enteral feeding in advanced dementia. Six further articles, including five RCTs, were found which evaluated the effectiveness of interventions supporting patients or carers with advance care planning. Conclusion Decision‐making interventions typically consist of multiple components which aim to establish preferences for future health care. Advance care planning interventions supported aspects of the decision‐making processes but their impact on decision quality was rarely evaluated. Interventions did not increase the concordance of decisions with a person's values. The decision‐specific interventions are unlikely to produce benefit in other decision contexts. Patient Involvement Two caregivers, a public stakeholder group and a carer group were consulted in the design of the wider study to which this review relates. Six PLwD refined the research questions addressed in this paper.
... The data were retrieved from baseline assessments made in the DEMFACT Study, conducted between June 2016 and October 2016 in the Swiss German region of Switzerland. DEMFACT was a randomized controlled trial that evaluated FACT box decision support tools for treatment decision-making regarding advanced dementia among 64 physicians and 168 surrogates (relatives of dementia patients, n = 100; professional guardians, n = 68) who were randomized to either an intervention arm (n = 114) or a control arm (n = 118) [21]. The participants in the intervention and control arms were mailed written questionnaires at baseline and 1 month later that included questions about the use of treatments for advanced dementia patients based on hypothetical scenarios. ...
... Surrogates were identified either through the Alzheimer Association of the canton of Zurich or from the Swiss Association of Professional Guardians mailing list. The detailed recruitment procedure is described elsewhere [21]. Eligible participants were mailed a consent form, which they were asked to sign and return to the research team. ...
Article
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Background: Assisted dying and continuous deep sedation (CDS) are controversial practices. Little is known about the perceptions of physicians and surrogates about these practices for patients with advanced dementia. Objectives: To describe and compare physician and surrogate agreement with the use of assisted dying and CDS in advanced dementia. Design, setting, subjects: Physicians (n = 64) and surrogates (n = 168) of persons with advanced dementia were recruited as part of a randomized controlled trial in Switzerland that tested decision support tools in this population. Methods: At baseline, the participants were asked about their agreement with assisted dying and CDS in advanced dementia using the following response options: "completely agree," "somewhat agree," "somewhat disagree," "completely disagree," and "do not know." Multivariable logistic regressions compared the likelihood that surrogates versus physicians would completely or somewhat agree (vs. completely or somewhat disagree) with these practices. Results: The physicians and surrogates, respectively, had a mean age (SD) of 50.6 years (9.9) and 57.4 years (14.6); 46.9% (n = 30/64) and 68.9% (n = 115/167) were women. A total of 20.3% (n = 13/64) of the physicians and 47.0% (n = 79/168) of the surrogates agreed with assisted dying in advanced dementia. Surrogates were significantly more likely to agree with this practice than physicians (adjusted odds ratio, 3.87; 95% CI: 1.94, 7.69). With regard to CDS, 51.6% (n = 33/64) of the physicians and 41.9% (n = 70/169) of the surrogates agreed with this practice, which did not differ significantly between the groups. Conclusions: The surrogates were more agreeable to considering assisted dying in the setting of advanced dementia than the physicians, and about half of the participants in both groups reported CDS to be an appropriate option for this population.
... It can increase patients' understanding of the risks and benefits of different treatment plans, effectively reduce decision-making conflicts, improve decision-making readiness, and optimize decision-making quality [36]. Research related to PDAs has developed rapidly and has been applied to multiple clinical disciplines [37][38][39]. Currently, surgical PDAs for HA patients in clinical practice are lacking, which to some extent hinders effective communication between health care professionals and patients, further affecting the formulation of patients' decisions. ...
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Background Patients with end-stage haemophilic arthritis (HA) are often hesitant about joint replacement surgery, yet little is known about the decision experiences faced by these patients. The aim of this study was to better understand the experiences faced by patients with HA when making decisions about joint replacement surgery and to provide a reference for health care professionals in the development of decision-making aids. Methods Fifteen HA patients who were candidates for joint replacement surgery at a tertiary and first-class hospital in Zhejiang Province were interviewed using a semistructured in-depth interview from January to December 2023. Colaizzi's seven-step method was used to analyse the data and refine the themes. Results The decision experience for patients with HA regarding joint replacement surgery can be summarized into four themes: decision information conflict, decision support conflict, self-perceived conflict, and self-developmental conflict. Conclusion Patients with HA face numerous decision conflicts. Health care professionals should develop joint replacement surgery decision-making aids suitable for patients with HA as soon as possible to reduce the decision conflict. Trial registration The study received approval from the Ethics Committee of Zhejiang Provincial Hospital of Traditional Chinese Medicine, China (registration date: September 22, 2023; registration number: 2023-KLS-294–01).
... 20 2. Increased patient involvement in medical decisionmaking: As based on data from a Cochrane Review evidence-based tools aimed at enabling informed decision-making have the potential to increase patient involvement. 14 3. Decreased decisional conflict: A study 24 found that, compared with controls, participants who received fact boxes experienced less decisional conflict about antibiotic use (non-standardised beta (β) = −8.35, 95% CI, −12.43, −4.28) and artificial hydration (β = −6.02, ...
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Introduction Evidence summaries on the benefits and harms of treatment options support informed decisions under controlled conditions. However, few studies have investigated how such formats support decision-making across different social groups. There is a risk that only disadvantaged people will be able to make informed health decisions—possibly increasing the health equity gap. It is also unclear whether they support decision-making in the field at all. The aim of our study is to assess whether evidence summaries based on the fact box format can help people from different social groups make informed decisions about COVID-19 and influenza vaccinations, and thus reduce inequity in health communication. Methods and analysis In a multi-centre, cluster-randomised, controlled trial, health educators from usual care and outreach work in Germany will be randomised in a 1:1 ratio to provide either usual health communication plus an evidence summary (‘fact box’) or usual health communication. Health educators provide a flyer about COVID-19 or influenza vaccination which contains a link to an online study either with (intervention) or without (control) fact box on the reverse side. Flyer and online study will be available in Arabic, German, Turkish and Russian language. The primary outcome is informed vaccination intention, based on vaccination knowledge, attitudes, intentions and behaviour. Secondary outcomes include risk perception, decisional conflict and shared decision-making. We will use linear mixed models to analyse the influence of both individual (eg, education status) and cluster level factors and account for the expected cluster variability in realising usual health communication or the intervention. The statistical analysis plan includes the selection of appropriate measures of effect size and power calculation, assuming a sample size of 800 patients. Ethics and dissemination The trial has been approved by the Ethics Committee of the University of Potsdam, Germany (application numbers: 34/2021 and 57/2022). Results will be disseminated through peer-reviewed journals, conferences and to relevant stakeholders. Protocol version Version 6 (4 October 2024); Preprint available on Research Square: https://doi.org/10.21203/rs.3.rs-3401234/v3 Trial registration number NCT06076421 .
... c) We suggest that implementation of fact boxes do decrease decisional con ict, as a study 36 found that, compared with controls, participants who received fact boxes experienced less decisional con ict about antibiotic use (unstandardised beta (b) = -8.35, 95% con dence interval (CI), -12.43, -4.28) and arti cial hydration (b = -6.02, ...
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Introduction Summaries of the best available evidence on the benefits and harms of different treatment options support informed decision making of well-educated participants under controlled conditions. However, few studies have investigated how such formats support decision-making across different social groups. There is a risk that these evidence summaries will only help less disadvantaged people to make informed health decisions – possibly increasing the health equity gap. It is also unclear whether they support decision-making in the field at all. The aim of our study is to assess whether evidence summaries based on the fact box format can help people from different social groups make informed decisions about COVID-19 and influenza vaccination, and to investigate whether these fact boxes can help reduce inequities in health communication. Methods and analysis In a multicentre, cluster-randomised, controlled trial, health educators (HEs) from usual care (e.g. physicians) and outreach work (e.g. social services) in Germany will be randomised to provide either usual health communication plus an evidence summary (‘fact box’) or usual health communication. As part of their health education programme, HEs provide people who are about to make a decision about COVID-19 or flu vaccination with a flyer containing a link to an online study either with (intervention) or without (control) fact box on the reverse side. The flyer and online study will be available in Arabic, German, Turkish and Russian language. The primary outcome is informed vaccination intention, based on vaccination knowledge, attitudes, intentions and behaviour. Secondary outcomes include risk perception, decisional conflict and shared decision making. Data analysis will initially be based on descriptive statistics as well as frequency distributions and histograms to identify outliers and missing data. We will use linear mixed models to analyse the influence of both individual (e.g. education status, health literacy) and cluster level factors (e.g. setting) and account for the expected cluster variability in realising usual health communication or the intervention. The statistical analysis plan includes the selection of appropriate measures of effect size and power calculation. Ethics and dissemination The study and its pre-studies have been reviewed and approved by the ethics committee of the University of Potsdam, Germany (application numbers: 34/2021 and 57/2022). We plan to disseminate our findings through publications in peer-reviewed journals, national and international conferences, and relevant working groups and networks, also targeting relevant community stakeholder. Trial registration: clinicaltrials.gov (NCT06076421)
... This aligns with the literature showing that communication of absolute numbers seems to be more comprehensible and realistic for patients and should therefore be used preferably when it comes to the development of EBPI (Zipkin et al., 2014). The fact boxes were understandable to both pwMS and neurologists again in accordance with the literature (Brick et al., 2020), (Loizeau et al., 2019). ...
Article
Background Multiple sclerosis treatment options are increasing. Evidence-based patient information (EBPI) are therefore crucial to enable patient involvement in decision making. Based on earlier work on decision support, patient information handbooks on 8 MS immunotherapies were developed, piloted and evaluated with support from the German Clinical Competence Network MS and the German MS Society. Methods Handbooks were structured according to EBPI concepts. Drafts were commented by patient representatives and neurologists with an MS expertise. Executive boards of the German MS Society and the Competence Network as well as pharmaceutical companies’ feedback was included. Handbooks were distributed among MS neurologists by the German MS Society. Evaluation followed applying a mixed methods approach with interviews, focus groups and surveys. One survey addressed persons with MS (pwMS) based on a questionnaire included in each handbook. Neurologists who received printed patient handbooks were invited to give feedback in a second survey. Results Eight handbooks were developed providing absolute and relative risk information in numbers and figures as well as monitoring needs and drug fact boxes. Despite the high amount of information and the display of low absolute risk reduction rates of treatments, handbooks were overall appreciated by pwMS (n=107) and mostly also by physicians (n=24). For more than 70% of the pwMS the information was new, understandable and supportive for decision making. But patients felt uncomfortable with relative risk information. However, response rates in the evaluation were low, exposing the challenges when implementing EBPI into clinical care. Therefore, conclusions must be considered preliminarily. Conclusion EBPI on immunotherapies for MS seem feasible and are appreciated by patients and treating neurologists but more implementation research is needed.
... Therefore, the potential use of tube feeding, artificial hydration and antibiotics in (repeated) episodes of pneumonia are key questions in dementia care. Based on the available evidence, the current guidelines of the Swiss Academy of Medical Sciences advise against the use of percutaneous endoscopic gastroscopy feeding tubes in advanced dementia [76]. The available evidence for the use of artificial hydration and antibiotic pneumonia treatment in advanced dementia is very limited, so decisions are mostly based on the individual circumstances. ...
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In October 2019, a Swiss panel of experts met for the Dementia Summit in Brunnen, Switzerland, to discuss the latest scientific findings on basic and clinical research, as well as practical and political approaches to the challenges of dementia disorders in Switzerland. Here, we present the conference summary. To study pathophysiological changes, as well as the underlying mechanism of fluid biomarker changes, excellent experimental approaches, including transgenic mouse models, are available. Current knowledge about presymptomatic disease progression is largely derived from the longitudinal study of individuals with autosomal dominant mutations (Dominantly Inherited Alzheimer Network). Importantly, more than one third of identified dementia risk factors can be modified. For example, sleep disturbances are not only associated with dementia and neurodegeneration in specific brain regions, but also precede cognitive decline and contribute to the development of brain pathology. Regarding the neuropsychological examination of dementia disorders, standardised tests of social cognition, one of the six cognitive domains that must be assessed according to the fifth edition of the Diagnostic and Statistical Manual for Mental Disorders, are missing, but now under development. The most important new therapeutic approach in the treatment of Alzheimer’s disease is the current attempt to prevent β-amyloid accumulation. While until now clinical studies have failed because of side effects or insufficient clinical effectiveness, Biogen recently announced positive results of high doses of aducanumab, a monoclonal antibody against β-amyloid. Other approaches also show promise. In China, sodium oligomannate has been approved to treat Alzheimer's disease. The substance suppresses gut bacterial amino acids-shaped neuroinflammation to inhibit Alzheimer’s disease progression. Assistive technologies for dementia patients can help identify relevant information for care and nursing, as well as measurements for clinical interventions. Dementia patients have a high risk of developing delirium, even in the home environment. Therefore, it is necessary to use and further develop multi-disciplinary and systematic detection and prevention strategies. Homecare models for dementia patients with multidisciplinary teams have been established and evaluated and should be expanded. Dementia is the third-leading cause of death in Switzerland. In palliative care for severe dementia, the improvement of quality of life is of primary importance. The goals of the National Dementia Strategy, to increase the quality of life in those affected and to reduce taboos surrounding the disease, are still unrealised. The need for further national and regional engagement in order to implement the different findings of the strategy has largely been acknowledged, and these implementations have become the core tasks of a national dementia platform.
... Als Evidenz dienen bevorzugt systematische Übersichtsarbeiten, Metaanalysen oder randomisiertkontrollierte Studien, die durch systematische Literaturrecherchen identifiziert werden. Faktenboxen tragen dazu bei, auch medizinisch und statistisch nicht vorgebildeten Personen informierte Entscheidungen zu ermöglichen [9,10,11,12,13]. Abbildung 4 zeigt eine Faktenbox zur Brustkrebsfrüherkennung durch Mammografie. ...
Article
Introdução: No Brasil, apesar da alta prevalência da demência, há poucos estudos e pouca aplicação de Cuidados Paliativos (CP). Objetivo: Trazer uma revisão sistemática sobre os efeitos do CP no contexto da demência avançada. Método: A população era humanos, de qualquer gênero, em qualquer ambiente, com diagnóstico de demência avançada. Buscamos intervenções clínicas e não clínicas dentro dos CP e o grupo controle cuidado usual ou outros CP. Os estudos utilizados foram Ensaios Clínicos Randomizados (ECR) escritos em inglês, português e espanhol, publicados nos anos de 2014 até 2023. Resultados: Acerca da qualidade de vida, nenhum dos três estudos demonstrou superioridade significativa do braço da intervenção. Sobre o manejo de sintomas, três estudos falharam em apresentar superioridade significativa do braço da intervenção; um estudo demonstrou redução da dor observada; e outro artigo observou maior documentação da dor e maior direcionamento do tratamento por sintomas na intervenção. Dentro do planejamento antecipado de cuidados, três artigos demonstraram resultados significativos, porém conflitantes em relação a diretivas antecipadas. Um artigo demonstrou menos conflitos decisórios e outros dois estudos evidenciaram maior concordância entre objetivos de cuidado no grupo da intervenção. O estudo selecionado sobre uso de intervenções não paliativas demonstrou resultados divergentes entre intervenções. Discussão: Foram demonstradas evidências na percepção e documentação dos sintomas e direcionamento do tratamento, na redução de conflito decisório, na concordância de objetivos de cuidado, nas diretivas antecipadas e na redução de intervenções não paliativas.
Article
Background Substitute decision‐makers (SDMs) make decisions that honor medical, personal, and end‐of‐life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem‐solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta‐analyses. This scoping review identifies evidence‐based decision‐making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. Methods The scoping review used the search strategy: Population—SDMs for older adults who have lost decision‐making capacity; Concept—supports, resources, tools, and interventions; Context—any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta‐analyses. Results Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full‐text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision‐making needs. Conclusion Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports.
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Background Evidence-based fact boxes have been shown to support informed decision-making. However, few studies have analysed how the boxes support decision-making in different social groups. Further, it is unclear whether fact boxes promote informed and shared decision making equally when implemented by health educators (HE) in different settings. Hence, there is a risk that fact boxes will only help less disadvantaged people to make informed health decisions. The aim of our study is to assess whether fact boxes can help people from different social groups make informed decisions about COVID-19 and influenza vaccination, and whether they contribute to reducing inequities in health care. Methods In a multi-centre cluster randomised controlled trial, HE from usual care (e.g. doctors) and outreach work (e.g. from social services) in Germany will be recruited. HE who are randomized to receive the intervention will receive a flyer with a QR code and a link to an online survey to pass on to those who are about to make a vaccination decision. The back of the flyer contains an evidence-based fact box about COVID-19 or the influenza vaccine, which can be used to inform. HE who are randomized to control will receive the flyer without the fact box. The flyer and online study will be available in Arabic, German, Turkish and Russian language. The primary outcome is informed vaccination intention, based on vaccination knowledge, attitudes, vaccination intentions and behaviour. Secondary outcomes include risk perception, decisional conflict and shared decision making. The statistical analysis plan includes the selection of appropriate measures of effect size, sample size calculation, and significance testing. Discussion Failing to consider inequalities when developing and evaluating interventions that influence health decisions - such as evidence-based health information - exacerbates health inequities. The aim of our study is to find out whether evidence-based fact boxes developed with an equity lens work well in different settings where health communication takes place. The results will help determine if and how fact boxes can be used to improve health care in and outside of traditional primary care structures, especially for disadvantaged groups, and will thus provide valuable insights into advancing health care equity. Trial registration: clinicaltrials.gov (NCT06076421)
Article
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One of the major hurdles to promoting informed decision making in health is the continued use of poor risk presentation formats. This article offers a guide to develop a Fact Box, a simple decision tool to present data about the benefits and harms of treatments that has been demonstrated to improve understanding of health risks, an important part of risk literacy. The article offers guidance about how to determine the evidence basis for a health topic, select outcomes to report, extract and present numbers or outcomes, and design the layout. The guide also addresses potential challenges for summarizing evidence and provides alternatives for addressing issues related to missing, insufficient, imprecise, or conflicting evidence and for dealing with issues related to statistical and clinical significance. The guide concludes with details on how to document the development of the Fact Box for the purpose of transparency and reproducibility. Fact Boxes are an efficient tool to promote risk literacy and should be available in every physician’s office.
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Decision boxes (DBoxes) are two-page evidence summaries to prepare clinicians for shared decision making (SDM). We sought to assess the feasibility of a clustered Randomized Controlled Trial (RCT) to evaluate their impact. A convenience sample of clinicians (nurses, physicians and residents) from six primary healthcare clinics who received eight DBoxes and rated their interest in the topic and satisfaction. After consultations, their patients rated their involvement in decision-making processes (SDM-Q-9 instrument). We measured clinic and clinician recruitment rates, questionnaire completion rates, patient eligibility rates, and estimated the RCT needed sample size. Among the 20 family medicine clinics invited to participate in this study, four agreed to participate, giving an overall recruitment rate of 20%. Of 148 clinicians invited to the study, 93 participated (63%). Clinicians rated an interest in the topics ranging 6.4-8.2 out of 10 (with 10 highest) and a satisfaction with DBoxes of 4 or 5 out of 5 (with 5 highest) for 81% DBoxes. For the future RCT, we estimated that a sample size of 320 patients would allow detecting a 9% mean difference in the SDM-Q-9 ratings between our two arms (0.02 ICC; 0.05 significance level; 80% power). Clinicians' recruitment and questionnaire completion rates support the feasibility of the planned RCT. The level of interest of participants for the DBox topics, and their level of satisfaction with the Dboxes demonstrate the acceptability of the intervention. Processes to recruit clinics and patients should be optimized.
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Pneumonia is common among patients with advanced dementia, especially toward the end of life. Whether antimicrobial treatment improves survival or comfort is not well understood. The objective of this study was to examine the effect of antimicrobial treatment for suspected pneumonia on survival and comfort in patients with advanced dementia. From 2003 to 2009, data were prospectively collected from 323 nursing home residents with advanced dementia in 22 facilities in the area of Boston, Massachusetts. Each resident was followed up for as long as 18 months or until death. All suspected pneumonia episodes were ascertained, and antimicrobial treatment for each episode was categorized as none, oral only, intramuscular only, or intravenous (or hospitalization). Multivariable methods were used to adjust for differences among episodes in each treatment group. The main outcome measures were survival and comfort (scored according to the Symptom Management at End-of-Life in Dementia scale) after suspected pneumonia episodes. Residents experienced 225 suspected pneumonia episodes, which were treated with antimicrobial agents as follows: none, 8.9%; oral only, 55.1%, intramuscular, 15.6%, and intravenous (or hospitalization), 20.4%. After multivariable adjustment, all antimicrobial treatments improved survival after pneumonia compared with no treatment: oral (adjusted hazard ratio [AHR], 0.20; 95% confidence interval [CI], 0.10-0.37), intramuscular (AHR, 0.26; 95% CI, 0.12-0.57), and intravenous (or hospitalization) (AHR, 0.20; 95% CI, 0.09-0.42). After multivariable adjustment, residents receiving any form of antimicrobial treatment for pneumonia had lower scores on the Symptom Management at End-of-Life in Dementia scale (worse comfort) compared with untreated residents. Antimicrobial treatment of suspected pneumonia episodes is associated with prolonged survival but not with improved comfort in nursing home residents with advanced dementia.
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To evaluate the effect of a video decision support tool on the preferences for future medical care in older people if they develop advanced dementia, and the stability of those preferences after six weeks. Randomised controlled trial conducted between 1 September 2007 and 30 May 2008. Setting Four primary care clinics (two geriatric and two adult medicine) affiliated with three academic medical centres in Boston. Convenience sample of 200 older people (>or=65 years) living in the community with previously scheduled appointments at one of the clinics. Mean age was 75 and 58% were women. Verbal narrative alone (n=106) or with a video decision support tool (n=94). Preferred goal of care: life prolonging care (cardiopulmonary resuscitation, mechanical ventilation), limited care (admission to hospital, antibiotics, but not cardiopulmonary resuscitation), or comfort care (treatment only to relieve symptoms). Preferences after six weeks. The principal category for analysis was the difference in proportions of participants in each group who preferred comfort care. Among participants receiving the verbal narrative alone, 68 (64%) chose comfort care, 20 (19%) chose limited care, 15 (14%) chose life prolonging care, and three (3%) were uncertain. In the video group, 81 (86%) chose comfort care, eight (9%) chose limited care, four (4%) chose life prolonging care, and one (1%) was uncertain (chi(2)=13.0, df=3, P=0.003). Among all participants the factors associated with a greater likelihood of opting for comfort care were being a college graduate or higher, good or better health status, greater health literacy, white race, and randomisation to the video arm. In multivariable analysis, participants in the video group were more likely to prefer comfort care than those in the verbal group (adjusted odds ratio 3.9, 95% confidence interval 1.8 to 8.6). Participants were re-interviewed after six weeks. Among the 94/106 (89%) participants re-interviewed in the verbal group, 27 (29%) changed their preferences (kappa=0.35). Among the 84/94 (89%) participants re-interviewed in the video group, five (6%) changed their preferences (kappa=0.79) (P<0.001 for difference). Older people who view a video depiction of a patient with advanced dementia after hearing a verbal description of the condition are more likely to opt for comfort as their goal of care compared with those who solely listen to a verbal description. They also have more stable preferences over time. Clinicaltrials.gov NCT00704886.
Article
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While there is debate about whether it may be better to forgo than to initiate artificial nutrition and hydration (ANH) in nursing home patients with severe dementia, the consequences of forgoing ANH in these patients, in particular their discomfort, have not yet been investigated. In this prospective, longitudinal, observational study of 178 patients in Dutch nursing homes, discomfort was measured at all measurement times according to the observational Discomfort Scale-Dementia of Alzheimer Type. Furthermore, at all measurement times, plausible determinants of discomfort were registered. Data were analyzed with the statistical technique of generalized estimated equations. Decisions to forgo ANH were made most often in severely demented, female patients with an acute illness as the most important diagnosis at that time. The mean level of discomfort was highest at the time of the decision and decreased in the days thereafter. There were substantial differences in level of discomfort between patients. Dyspnea, restlessness, and physicians' observations of pain and dehydration were associated with higher levels of discomfort. Furthermore, patients who were awake had higher levels of observed discomfort than patients who were asleep. Forgoing ANH in patients with severe dementia who scarcely or no longer eat or drink seems, in general, not to be associated with high levels of discomfort. The individual differences emphasize the need for constant attention for possible discomfort.
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To develop a set of quality criteria for patient decision support technologies (decision aids). Two stage web based Delphi process using online rating process to enable international collaboration. Individuals from four stakeholder groups (researchers, practitioners, patients, policy makers) representing 14 countries reviewed evidence summaries and rated the importance of 80 criteria in 12 quality domains on a 1 to 9 scale. Second round participants received feedback from the first round and repeated their assessment of the 80 criteria plus three new ones. Aggregate ratings for each criterion calculated using medians weighted to compensate for different numbers in stakeholder groups; criteria rated between 7 and 9 were retained. 212 nominated people were invited to participate. Of those invited, 122 participated in the first round (77 researchers, 21 patients, 10 practitioners, 14 policy makers); 104/122 (85%) participated in the second round. 74 of 83 criteria were retained in the following domains: systematic development process (9/9 criteria); providing information about options (13/13); presenting probabilities (11/13); clarifying and expressing values (3/3); using patient stories (2/5); guiding/coaching (3/5); disclosing conflicts of interest (5/5); providing internet access (6/6); balanced presentation of options (3/3); using plain language (4/6); basing information on up to date evidence (7/7); and establishing effectiveness (8/8). Criteria were given the highest ratings where evidence existed, and these were retained. Gaps in research were highlighted. Developers, users, and purchasers of patient decision aids now have a checklist for appraising quality. An instrument for measuring quality of decision aids is being developed.
Article
Importance Better advance care planning (ACP) can help promote goal-directed care in patients with advanced dementia. Objectives To test whether an ACP video (vs usual care) has an effect on documented advance directives, level of care preferences, goals-of-care discussions, and burdensome treatments among nursing home residents with advanced dementia. Design, Setting, and Participants The Educational Video to Improve Nursing home Care in End-stage dementia (EVINCE) trial was a cluster randomized clinical trial conducted between February 2013 and July 2017, at 64 Boston-area nursing homes (32 facilities per arm). A total of 402 residents with advanced dementia and their proxies (intervention arm, n = 212; control arm, n = 190) were assessed quarterly for 12 months. Interventions A 12-minute ACP video for proxies with written communication of their preferred level of care (comfort, basic, or intensive) to the primary care team. Main Outcomes and Measures The primary outcome was the proportion of residents with do-not-hospitalize (DNH) directives by 6 months. Secondary outcomes included preference for comfort care, documented directives to withhold tube-feeding and intravenous hydration, documented goals-of-care discussions, and burdensome treatments (hospital transfers, tube-feeding, or parenteral therapy) per 1000 resident-days. Exploratory analyses examined associations between trial arm and documented advance directives when comfort care was preferred. Results The mean age of the 402 study residents was 86.7 years [range, 67-102 years]; 350 were white (87.1%) and 323 were female (80.3%), with DNH directives that by 6 months did not differ between arms (63% in both arms; adjusted odds ratio [AOR], 1.08; 95% CI, 0.69-1.69). Preferences for comfort care, directives to withhold intravenous hydration, and burdensome treatments did not differ between arms. Residents in intervention vs control facilities were more likely to have directives for no tube-feeding at 6 months (70.10% vs 61.90%; AOR, 1.79; 95% CI, 1.13-2.82) and all other time periods, and documented goals-of-care discussions at 3 months (16.10% vs 7.90%; AOR, 2.58; 95% CI, 1.20-5.54). When comfort care was preferred, residents in the intervention arm were more likely to have both DNH and no tube-feeding directives (72.20% vs 52.80%; AOR, 2.68; 95% CI, 2.68-5.85). Conclusions and Relevance An ACP video did not have an effect on preferences, DNH status, or burdensome treatments among residents with advanced dementia, but did increase directives to withhold tube-feeding. When proxies preferred comfort care, advance directives of residents in the intervention arm were more likely to align with that preference. Trial Registration clinicaltrials.gov Identifier: NCT01774799
Article
Context: Delivering goal-directed care is a hallmark of high quality palliative care, but requires an understanding of preferences. Objectives: To describe and identify factors associated with level of care preferences among proxies of nursing home residents with advanced dementia. Methods: Nursing home residents with advanced dementia and their proxies (N=402 dyads) were recruited from 62 Boston-area facilities as part of an ongoing randomized clinical trial. At baseline, all proxies were asked to select which level of care they felt the resident should receive: intensive, basic, or comfort care. Multivariable logistic regression identified resident and proxy factors associated with a preference for comfort care (versus basic or intensive medical care). Results: Proxy level of care preferences were: comfort, 62.2%; basic, 31.1%; and intensive medical care, 6.5%. In multivariable analyses, proxy perception that the resident had less than 6 months to live was most strongly associated with a preference for comfort-focused care (adjusted odds ratio (AOR) 12.25, 95% confidence interval (CI) 4.04 - 37.08). Additional factors significantly associated with a preference for comfort care included: older resident age, worse resident cognitive impairment, and the proxy having been asked about goals of care preferences by a nursing home health care provider (AOR 1.71, 95% CI 1.07, 2.74). Conclusion: The majority of proxies select comfort as the preferred level of care for nursing home residents with advanced dementia. Discussions regarding prognosis, as well as inquiry about goals of care, are modifiable factors that may promote a preference for comfort care in this population.
Article
Importance: In advanced dementia, goals of care decisions are challenging and medical care is often more intensive than desired. Objective: To test a goals of care (GOC) decision aid intervention to improve quality of communication and palliative care for nursing home residents with advanced dementia. Design, setting, and participants: A single-blind cluster randomized clinical trial, including 302 residents with advanced dementia and their family decision makers in 22 nursing homes. Interventions: A GOC video decision aid plus a structured discussion with nursing home health care providers; attention control with an informational video and usual care planning. Main outcomes and measures: Primary outcomes at 3 months were quality of communication (QOC, questionnaire scored 0-10 with higher ratings indicating better quality), family report of concordance with clinicians on the primary goal of care (endorsing same goal as the "best goal to guide care and medical treatment," and clinicians' "top priority for care and medical treatment"), and treatment consistent with preferences (Advance Care Planning Problem score). Secondary outcomes at 9 months were family ratings of symptom management and care, palliative care domains in care plans, Medical Orders for Scope of Treatment (MOST) completion, and hospital transfers. Resident-family dyads were the primary unit of analysis, and all analyses used intention-to-treat assignment. Results: Residents' mean age was 86.5 years, 39 (12.9%) were African American, and 246 (81.5%) were women. With the GOC intervention, family decision makers reported better quality of communication (QOC, 6.0 vs 5.6; P = .05) and better end-of-life communication (QOC end-of-life subscale, 3.7 vs 3.0; P = .02). Goal concordance did not differ at 3 months, but family decision makers with the intervention reported greater concordance by 9 months or death (133 [88.4%] vs 108 [71.2%], P = .001). Family ratings of treatment consistent with preferences, symptom management, and quality of care did not differ. Residents in the intervention group had more palliative care content in treatment plans (5.6 vs 4.7, P = .02), MOST order sets (35% vs 16%, P = .05), and half as many hospital transfers (0.078 vs 0.163 per 90 person-days; RR, 0.47; 95% CI, 0.26-0.88). Survival at 9 months was unaffected (adjusted hazard ratio [aHR], 0.76; 95% CI, 0.54-1.08; P = .13). Conclusions and relevance: The GOC decision aid intervention is effective to improve end-of-life communication for nursing home residents with advanced dementia and enhance palliative care plans while reducing hospital transfers. Trial registration: clinicaltrials.gov Identifier: NCT01565642.
Article
Background: Direct-to-consumer prescription drug ads typically fail to provide fundamental information that consumers need to make informed decisions: data on how well the drug works. Objective: To see whether providing consumers with a drug facts box-a table quantifying outcomes with and without the drug improves knowledge and affects judgments about prescription medications. Design: Two randomized, controlled trials conducted between October 2006 and April 2007: a symptom drug box trial using direct-to-consumer ads for a histamine-2 blocker and a proton-pump inhibitor to treat heartburn, and a prevention drug box trial using direct-to-consumer ads for a statin and clopidogrel to prevent cardiovascular events. Setting: National sample of U. S. adults identified by random-digit dialing. Participants: Adults age 35 to 70 years who completed a mailed survey; the final samples comprised 231 participants with completed surveys in the symptom drug box trial (49% response rate) and 219 in the prevention drug box trial (46% response rate). Intervention: In both trials, the control group received 2 actual drug ads (including both the front page and brief summary). The drug box group received the same ads, except that the brief summary was replaced by a drug facts box. Measurements: Choice between drugs (primary outcome of the symptom drug box trial) and accurate perceptions of drug benefits and side effects (primary outcome of the prevention drug box trial). Results: In the symptom drug box trial, 70% of the drug box group and 8% of the control group correctly identified the PPI as being "a lot more effective" than the histamine-2 blocker (P < 0.001), and 80% and 38% correctly recognized that the side effects of the 2 drugs were similar (P < 0.001). When asked what they would do if they had bothersome heartburn and could have either drug for free, 68% of the drug box group and 31% of the control group chose the proton-pump inhibitor, the superior drug (P < 0.001). In the prevention drug box trial, the drug box improved consumers' knowledge of the benefits and side effects of a statin and clopidogrel. For example, 72% of the drug box group and 9% of the control group correctly quantified the benefit (absolute risk reduction) of the statin (P < 0.001). Most of the control participants overestimated this benefit, and 65% did so by a factor of 10 or more. Limitations: The trials tested drug boxes in only 4 direct-to-consumer ads. If other direct-to-consumer ads were to communicate outcome data better, the effect of the drug box would be reduced. Conclusion: A drug facts box improved U. S. consumers' knowledge of prescription drug benefits and side effects. It resulted in better choices between drugs for current symptoms and corrected the overestimation of benefit in the setting of prevention.
Article
Objectives: To describe observations of suffering in patients with dementia from the diagnosis of pneumonia until cure or death. Design: Prospective observational study between January 2012 and May 2014. Setting: Dutch nursing homes (32). Participants: Nursing home patients with dementia and pneumonia (n = 193). Measurements: Independent observers performed observations of patients with dementia scheduled 13 times within the 15 days following diagnosis of pneumonia; twice daily in the first 2 days- to observe discomfort (Discomfort Scale-Dementia of Alzheimer Type; range 0-27), comfort (End Of Life in Dementia-Comfort Assessment in Dying; range 14-42), pain (Pain Assessment in Advanced Dementia; range 0-10), and dyspnea (Respiratory Distress Observation Scale; range 0-16). Results: Observational data were obtained for 208 cases of pneumonia in 193 patients. In 71.2% of cases, patients received 1 or more treatments to relieve symptoms such as antipyretics, opioids, or oxygen; 89.4% received antibiotics. Discomfort was highest 1 day after diagnosis [mean Discomfort Scale-Dementia of Alzheimer Type score 8.1 (standard deviation, SD 5.8)], then declined, and stabilized around day 10 [mean 4.5 (SD 4.1)], or increased in the days preceding death. Observed pain and dyspnea followed a comparable pattern. Discomfort patterns did not differ much between cases treated with and without antibiotics. Conclusions: Pneumonia in patients with dementia involved elevated levels of suffering during 10 days following diagnosis and in the days preceding death. Overall observed discomfort was low compared with prior Dutch studies, and the number of treatments to relieve symptoms was higher. Future studies should examine whether symptoms of pneumonia can be relieved even more, and what treatments are the most effective.
Article
As the population ages, more adults will develop impaired decision-making capacity and have no family members or friends available to make medical decisions on their behalf. In such situations, a professional guardian is often appointed by the court. This official has no preexisting relationship with the impaired individual but is paid to serve as a surrogate decision maker. When a professional guardian is faced with decisions concerning life-sustaining treatment, substituted judgment may be impossible, and reports have repeatedly suggested that guardians are reluctant to make the decision to limit care. Physicians are well positioned to assist guardians with these decisions and safeguard the rights of the vulnerable persons they represent. Doing so effectively requires knowledge of the laws governing end-of-life decisions by guardians. However, physicians are often uncertain about whether guardians are empowered to withhold treatment and when their decisions require judicial review. To address this issue, we analyzed state guardianship statutes and reviewed recent legal cases to characterize the authority of a guardian over choices about end-of-life treatment. We found that most state guardianship statutes have no language about end-of-life decisions. We identified 5 legal cases during the past decade that addressed a guardian’s authority over these decisions, and only 1 case provided a broad framework applicable to clinical practice. Work to improve end-of-life decision making by guardians may benefit from a multidisciplinary effort to develop comprehensive standards to guide clinicians and guardians when treatment decisions need to be made.
Article
We conducted 2 randomized, controlled trials with the same basic design from October 2006 through April 2007: the symptom drug box trial and the prevention drug box trial. We conducted a pair of trials because consumers generally face decisions about 2 categories of drugs: those taken to treat current symptoms and those taken to reduce the risk for future events (prevention). In the symptom drug box trial, we used direct-to-consumer ads for drugs to treat heartburn, an outcome (heartburn relief) that is common and experienced directly. We chose to include a proton-pump inhibitor (PPI) and a histamine-2 (H2)–blocker because both drugs are used to treat current symptoms of the same disease and have similar side effect profiles, but PPIs clearly outperform H2-blockers; we could therefore assess whether the box helped consumers choose the superior drug. In the prevention drug box trial, we used advertisements for a statin and clopidogrel for secondary cardiovascular prevention. These drugs are used to reduce the risk for future events that are important but relatively rare (heart attack and death), so absolute effects can only be small. The goal of this trial was to see whether the box improved the accuracy of consumers' perceptions about drugs used to reduce cardiovascular risk. Figure 1 shows the ads used in each trial.
Article
An 89-year-old male nursing home resident with a 10-year history of Alzheimer's disease presents with a temperature of 38.3 degrees C, a productive cough, and a respiratory rate of 28 breaths per minute. Nurses report that for the past 6 months he has been coughing at breakfast and having trouble swallowing. He has profound memory deficits, no longer recognizes his daughter (who is his health care proxy), is bed-bound, is able to mumble a couple of words, and is unable to perform any activities of daily living. The nurse asks whether he should be hospitalized. How should this patient be evaluated and treated?
Article
Importance Infection management in advanced dementia has important implications for (1) providing high-quality care to patients near the end of life and (2) minimizing the public health threat posed by the emergence of multidrug-resistant organisms (MDROs).Design, Setting, and Participants Prospective cohort study of 362 residents with advanced dementia and their health care proxies in 35 Boston area nursing homes for up to 12 months.Main Outcomes and Measures Data were collected to characterize suspected infections, use of antimicrobial agents (antimicrobials), clinician counseling of proxies about antimicrobials, proxy preference for the goals of care, and colonization with MDROs (methicillin-resistant Staphylococcus aureus, vancomycin-resistant enterococci, and multidrug-resistant gram-negative bacteria). Main outcomes were (1) proportion of suspected infections treated with antimicrobials that met minimum clinical criteria to initiate antimicrobial treatment based on consensus guidelines and (2) cumulative incidence of MDRO acquisition among noncolonized residents at baseline.Results The cohort experienced 496 suspected infections; 72.4% were treated with antimicrobials, most commonly quinolones (39.8%) and third- or fourth-generation cephalosporins (20.6%). At baseline, 94.8% of proxies stated that comfort was the primary goal of care, and 37.8% received counseling from clinicians about antimicrobial use. Minimum clinical criteria supporting antimicrobial treatment initiation were present for 44.0% of treated episodes and were more likely when proxies were counseled about antimicrobial use (adjusted odds ratio, 1.42; 95% CI, 1.08-1.86) and when the infection source was not the urinary tract (referent). Among noncolonized residents at baseline, the cumulative incidence of MDRO acquisition at 1 year was 48%. Acquisition was associated with exposure (>1 day) to quinolones (adjusted hazard ratio [AHR], 1.89; 95% CI, 1.28-2.81) and third- or fourth-generation cephalosporins (AHR, 1.57; 95% CI, 1.04-2.40).Conclusions and Relevance Antimicrobials are prescribed for most suspected infections in advanced dementia but often in the absence of minimum clinical criteria to support their use. Colonization with MDROs is extensive in nursing homes and is associated with exposure to quinolones and third- and fourth-generation cephalosporins. A more judicious approach to infection management may reduce unnecessary treatment in these frail patients, who most often have comfort as their primary goal of care, and the public health threat of MDRO emergence.
Article
Objectives Decision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making. Design Pre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up. Setting Two NHs in North Carolina. Participants Eighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker. Intervention (1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team. Measurements Surrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. Results Eighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P < .001). At 3 months, they reported improved quality of communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P < .001). Conclusions The decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention.
Article
Objectives: In advanced dementia, feeding problems are nearly universal, and families face difficult decisions about feeding options. Initial interviews for a randomized trial were used to describe surrogates' perceptions of feeding options, and to determine whether a decision aid on feeding options in advanced dementia would improve knowledge, reduce expectation of benefit from tube feeding, and reduce conflict over treatment choices for persons with advanced dementia. Design: Semistructured interview with prestudy and poststudy design for surrogates in the intervention group. Setting: Twenty-four skilled nursing facilities across North Carolina participating in a cluster randomized trial. Participants: Two hundred and fifty-five surrogate decision makers for nursing home residents with advanced dementia and feeding problems, in control (n = 129) and intervention (n = 126) groups. Intervention: For intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions. Measurements: The interview included open-ended items asking surrogates to report advantages and disadvantages of tube feeding and assisted oral feeding. Knowledge of feeding options was measured with 19 true/false items and items measuring expectation of benefit from tube feeding. Surrogates reported which of these two feeding options they preferred for the person with dementia, and how confident they were in this choice; their level of conflict about the choice was measured using the decisional conflict scale. Results: Before the decision aid, surrogates described advantages and disadvantages of assisted oral feeding and tube feeding in practical, ethical, and medical terms. After review of the decision aid, intervention surrogates had improved knowledge scores (15.5 vs 16.8; P < .001), decreased expectation of benefits from tube feeding (2.73 vs 2.32; P = .001), and reduced decisional conflict (2.24 vs 1.91; P < .001). Surrogates preferred assisted oral feeding initially and reported more certainty about this choice after the decision aid. Conclusions: A structured decision aid can be used to improve decision making about feeding options in dementia care.
Article
To test whether a decision aid improves quality of decision-making about feeding options in advanced dementia. Cluster randomized controlled trial. Twenty-four nursing homes in North Carolina. Residents with advanced dementia and feeding problems and their surrogates. Intervention surrogates received an audio or print decision aid on feeding options in advanced dementia. Controls received usual care. Primary outcome was the Decisional Conflict Scale (range: 1-5) measured at 3 months; other main outcomes were surrogate knowledge, frequency of communication with providers, and feeding treatment use. Two hundred fifty-six residents and surrogate decision-makers were recruited. Residents' average age was 85; 67% were Caucasian, and 79% were women. Surrogates' average age was 59; 67% were Caucasian, and 70% were residents' children. The intervention improved knowledge scores (16.8 vs 15.1, P < .001). After 3 months, intervention surrogates had lower Decisional Conflict Scale scores than controls (1.65 vs 1.90, P < .001) and more often discussed feeding options with a healthcare provider (46% vs 33%, P = .04). Residents in the intervention group were more likely to receive a dysphagia diet (89% vs 76%, P = .04) and showed a trend toward greater staff eating assistance (20% vs 10%, P = .08). Tube feeding was rare in both groups even after 9 months (1 intervention vs 3 control, P = .34). A decision aid about feeding options in advanced dementia reduced decisional conflict for surrogates and increased their knowledge and communication about feeding options with providers.
Article
To describe long-term mortality rate and to assess associations between mortality rate and antibiotic treatment of lower respiratory infection in patients with advanced dementia; antibiotic treatment allocation was independent of mortality risk-leaving less room for biased associations than in previous multicenter observational studies. Prospective study (2004-2009). Multilevel Cox proportional hazard analyses with adjustment for mortality risk were used to assess associations between antibiotics and mortality using time-dependent covariates. A US Department of Veterans Affairs nursing home. Ninety-four residents with advanced dementia who developed 109 episodes. Survival, treatment, mortality risk, illness severity, fluid intake, and several other patient characteristics. Ten-day mortality was 48%, and 6-month mortality was 74%. Antibiotics were used in 77% of episodes. Overall, antibiotics were not associated with mortality rate (Hazard Ratio [HR] 0.70, Confidence Interval [CI] 0.38-1.30); however, antibiotics were associated with reduced 10-day mortality rate (HR 0.51, CI, 0.30-0.87; rate after 10 days: 1.5, CI 0.42-5.2). Benefit from antibiotics was less likely with inadequate fluid intake, and when experiencing the first episode. In our sample of male nursing home residents with advanced dementia and lower respiratory infection, mortality was substantial despite antibiotic treatment. Antibiotics prolonged life but in many cases only for several days. Treatment decisions should take into account that antibiotics may delay death but may also prolong the dying process, indicating a need for accurate prediction of mortality and study of characteristics that may alter effectiveness of antibiotics.
Article
Dementia is a leading cause of death in the United States but is underrecognized as a terminal illness. The clinical course of nursing home residents with advanced dementia has not been well described. We followed 323 nursing home residents with advanced dementia and their health care proxies for 18 months in 22 nursing homes. Data were collected to characterize the residents' survival, clinical complications, symptoms, and treatments and to determine the proxies' understanding of the residents' prognosis and the clinical complications expected in patients with advanced dementia. Over a period of 18 months, 54.8% of the residents died. The probability of pneumonia was 41.1%; a febrile episode, 52.6%; and an eating problem, 85.8%. After adjustment for age, sex, and disease duration, the 6-month mortality rate for residents who had pneumonia was 46.7%; a febrile episode, 44.5%; and an eating problem, 38.6%. Distressing symptoms, including dyspnea (46.0%) and pain (39.1%), were common. In the last 3 months of life, 40.7% of residents underwent at least one burdensome intervention (hospitalization, emergency room visit, parenteral therapy, or tube feeding). Residents whose proxies had an understanding of the poor prognosis and clinical complications expected in advanced dementia were much less likely to have burdensome interventions in the last 3 months of life than were residents whose proxies did not have this understanding (adjusted odds ratio, 0.12; 95% confidence interval, 0.04 to 0.37). Pneumonia, febrile episodes, and eating problems are frequent complications in patients with advanced dementia, and these complications are associated with high 6-month mortality rates. Distressing symptoms and burdensome interventions are also common among such patients. Patients with health care proxies who have an understanding of the prognosis and clinical course are likely to receive less aggressive care near the end of life.
Article
To describe the medical decisions confronting healthcare proxies (HCPs) of nursing home (NH) residents with advanced dementia and to identify factors associated with greater decision-making satisfaction. Prospective cohort study. Twenty-two Boston-area NHs. Three hundred twenty-three NH residents with advanced dementia and their HCPs. Decisions made by HCPs over 18 months were ascertained quarterly. After making a decision, HCPs completed the Decision Satisfaction Inventory (DSI) (range 0-100). Independent variables included HCP and resident sociodemographic characteristics, health status, and advance care planning. Multivariable linear regression identified factors associated with higher DSI scores (greater satisfaction). Of 323 HCPs, 123 (38.1%) recalled making at least one medical decision; 232 decisions were made, concerning feeding problems (27.2%), infections (20.7%), pain (12.9%), dyspnea (8.2%), behavior problems (6.9%), hospitalizations (3.9%), cancer (3.0%), and other complications (17.2%). Mean DSI score +/- standard deviation was 78.4 +/- 19.5, indicating high overall satisfaction. NH provider involvement in shared decision-making was the area of least satisfaction. In adjusted analysis, greater decision-making satisfaction was associated with the resident living on a special care dementia unit (P=.002), greater resident comfort (P=.004), and the HCP not being the resident's child (P=.02). HCPs of NH patients with advanced dementia can most commonly expect to encounter medical decisions relating to feeding problems, infections, and pain. Inadequate support from NH providers is the greatest source of HCP dissatisfaction with decision-making. Greater resident comfort and care in a special care dementia unit are potentially modifiable factors associated with greater decision-making satisfaction.
Article
Direct-to-consumer prescription drug ads typically fail to provide fundamental information that consumers need to make informed decisions: data on how well the drug works. To see whether providing consumers with a drug facts box-a table quantifying outcomes with and without the drug-improves knowledge and affects judgments about prescription medications. Two randomized, controlled trials conducted between October 2006 and April 2007: a symptom drug box trial using direct-to-consumer ads for a histamine-2 blocker and a proton-pump inhibitor to treat heartburn, and a prevention drug box trial using direct-to-consumer ads for a statin and clopidogrel to prevent cardiovascular events. National sample of U.S. adults identified by random-digit dialing. Adults age 35 to 70 years who completed a mailed survey; the final samples comprised 231 participants with completed surveys in the symptom drug box trial (49% response rate) and 219 in the prevention drug box trial (46% response rate). In both trials, the control group received 2 actual drug ads (including both the front page and brief summary). The drug box group received the same ads, except that the brief summary was replaced by a drug facts box. Choice between drugs (primary outcome of the symptom drug box trial) and accurate perceptions of drug benefits and side effects (primary outcome of the prevention drug box trial). In the symptom drug box trial, 70% of the drug box group and 8% of the control group correctly identified the PPI as being "a lot more effective" than the histamine-2 blocker (P < 0.001), and 80% and 38% correctly recognized that the side effects of the 2 drugs were similar (P < 0.001). When asked what they would do if they had bothersome heartburn and could have either drug for free, 68% of the drug box group and 31% of the control group chose the proton-pump inhibitor, the superior drug (P < 0.001). In the prevention drug box trial, the drug box improved consumers' knowledge of the benefits and side effects of a statin and clopidogrel. For example, 72% of the drug box group and 9% of the control group correctly quantified the benefit (absolute risk reduction) of the statin (P < 0.001). Most of the control participants overestimated this benefit, and 65% did so by a factor of 10 or more. The trials tested drug boxes in only 4 direct-to-consumer ads. If other direct-to-consumer ads were to communicate outcome data better, the effect of the drug box would be reduced. A drug facts box improved U.S. consumers' knowledge of prescription drug benefits and side effects. It resulted in better choices between drugs for current symptoms and corrected the overestimation of benefit in the setting of prevention. National Cancer Institute and Attorney General Consumer and Prescriber Education Program.
Article
The study objective was to evaluate the psychometric properties of a decisional conflict scale (DCS) that elicits: 1) health-care consumers' uncertainty in making a health-related decision; 2) the factors contributing to the uncertainty; and 3) health-care consumers' perceived effective decision making. The DCS was developed in response to the lack of instruments available to evaluate health-care-consumer decision aids and to tailor decision-supporting interventions to particular consumer needs. The scale was evaluated with 909 individuals deciding about influenza immunization or breast cancer screening. A subsample of respondents was retested two weeks later. The test-retest reliability coefficient was 0.81. Internal consistency coefficients ranged from 0.78 to 0.92. The DCS discriminated significantly (p < 0.0002) between those who had strong intentions either to accept or to decline invitations to receive influenza vaccine or breast cancer screening and those whose intentions were uncertain. The scale also discriminated significantly (p < 0.0002) between those who accepted or rejected immunization and those who delayed their decisions to be immunized. There was a weak inverse correlation (r = -0.16, p < 0.05) between the DCS and knowledge test scores. The psychometric properties of the scale are acceptable. It is feasible and easy to administer. Evaluations of responsiveness to change and validation with more difficult decisions are warranted.
Article
To describe the development and evaluation of a decision aid for long-term tube feeding in cognitively impaired older people. Before-and-after study. Acute care hospitals in Ottawa, Canada. Substitute decision makers for 15 cognitively impaired inpatients 65 years and older being considered for placement of a percutaneous endoscopic gastrostomy tube. Questionnaires were used to compare the substitute decision makers' knowledge, decisional conflict, and predisposition regarding feeding tube placement before and after exposure to the decision aid. The acceptability of the decision aid was also assessed. Substitute decision makers significantly increased their knowledge (P = .004) and decreased their decisional conflict (P = .004) regarding long-term tube feeding after using the decision aid. The impact of the decision aid on predisposition toward the intervention was greatest for those who were unsure of their preferences at baseline. All substitute decision makers found the decision aid helpful and acceptable despite very difficult and emotional circumstances. A decision aid improves the decision-making process for long-term tube feeding in cognitively impaired older patients by decreasing decisional conflict and by promoting decisions that are informed and consistent with personal values. There are particular challenges for developing and evaluating these tools in the context of end-of-life decisions.
Article
To investigate the characteristics of patients in whom artificial nutrition and hydration (ANH) is forgone, duration of survival after the decision and factors that are associated with duration of survival. Observational study based on written questionnaires in 32 Dutch nursing homes. Of 178 nursing home patients with dementia, their treating nursing home physician (NHP) filled in a questionnaire directly after the decision was made to forgo ANH. The maximum follow-up was 6 weeks. Cox proportional hazards analysis was used to determine predictors of survival. Decisions to forgo ANH in Dutch nursing homes were made most often in patients with severe dementia who also had an acute illness. More than half the patients (59%) died within 1 week after the decision. Patients with dyspnea and/or apathy were more likely to die during follow-up than patients without these symptoms. Patients who were considered more severely ill by the NHP were more likely to die than those who were considered less severely ill. The presence of restlessness indicated a higher chance of survival. The clinical judgment of the NHP of the severity of illness appeared to be a strong predictor of patient survival. NHPs should not rely solely on their clinical judgment concerning survival, but they should also consider the presence or absence of dyspnea, apathy and restlessness.
Article
Generalizability of clinical predictors for mortality from lower respiratory infection (LRI) in nursing home residents has not been assessed for residents with dementia. In prospective cohort studies of LRI in 61 nursing homes in the Netherlands (n = 541) and 36 nursing homes in Missouri, USA (n = 564), we examined 14-day and 1- and 3-month mortality in residents with dementia who were treated with antibiotics. A logistic model predicting 14-day mortality derived from Dutch data included eating dependency, elevated pulse, decreased alertness, respiratory difficulty, insufficient fluid intake, high respiratory rate, male gender, and pressure sores. After adjusting coefficients with the heuristic shrinkage factor, the 14-day model showed good discrimination and calibration in both datasets. The apparent c-statistic for the original Dutch model was 0.80 (after correction for optimism, it was 0.75); the c-statistic was 0.74 in the U.S. validation population. The models predicting 1- and 3-month mortality showed moderate performance. A scoring system for estimating 14-day mortality performed equally well as the original model. We identified a set of credible clinical predictors that are easily assessed and demonstrated validity in identifying residents at low risk of dying from LRI across different nursing home populations. This tool should inform decision-making for families and doctors.
Article
To identify factors associated with satisfaction with care for healthcare proxies (HCPs) of nursing home (NH) residents with advanced dementia. Cross-sectional study. Thirteen NHs in Boston. One hundred forty-eight NH residents aged 65 and older with advanced dementia and their formally designated HCPs. MASUREMENTS: The dependent variable was HCPs' score on the Satisfaction With Care at the End of Life in Dementia (SWC-EOLD) scale (range 10-40; higher scores indicate greater satisfaction). Resident characteristics analyzed as independent variables were demographic information, functional and cognitive status, comfort, tube feeding, and advance care planning. HCP characteristics were demographic information, health status, mood, advance care planning, and communication. Multivariate stepwise linear regression was used to identify factors independently associated with higher SWC-EOLD score. The mean ages+/-standard deviation of the 148 residents and HCPs were 85.0+/-8.1 and 59.1+/-11.7, respectively. The mean SWC-EOLD score was 31.0+/-4.2. After multivariate adjustment, variables independently associated with greater satisfaction were more than 15 minutes discussing advance directives with a care provider at the time of NH admission (parameter estimate=2.39, 95% confidence interval (CI)=1.16-3.61, P<.001), greater resident comfort (parameter estimate=0.10, 95% CI=0.02-0.17, P=.01), care in a specialized dementia unit (parameter estimate=1.48, 95% CI=0.25-2.71, P=.02), and no feeding tube (parameter estimate=2.87, 95% CI=0.46-5.25, P=.02). Better communication, greater resident comfort, no tube feeding, and care in a specialized dementia unit are modifiable factors that may improve satisfaction with care in advanced dementia.
World Health Organization. The epidemiology and impact of dementia: current state and future trends
World Health Organization. The epidemiology and impact of dementia: current state and future trends. http://www.who.int/ mental_health/neurology/dementia/dementia_thematicbrief_ epidemiology.pdf. AccessedApril 26, 2018.