Christopher E Knoepke, Kayla Meza, Jennifer D Portz, Megan L Ranney, Stacy M Fisher, Faris Omeragic, Emily Greenway, Mirella Castaneda, Daniel D Matlock, Marian E Betz
Background: Most people with dementia (PWD) in the United States live in community settings supported by family and/or unpaid care partners. Firearms access is one of many decisions care partners navigate alongside PWD in efforts to prevent injuries and deaths. Conversations about firearms access are socially challenging, although specific challenges to be overcome have not been described.
Methods: As part of the larger Safety in Dementia Trial, we interviewed care partners about their views and experiences regarding firearms access in the home where the PWD resides. Interviewees were English-speaking adults (≥18 years) in the United States who are unpaid care partners of community-dwelling PWD. Responses to interview discussions related to (1) a desire for safety, and (2) fear of firearm violence was analyzed using a focusing process to categorize views into essential themes.
Results: Fifty care partners, who were primarily female (58%), White (66%), adult children (56%), and living in the same household (64%), participated in interviews between February 2023-February 2024. Dominant themes emerging from the focusing technique included (1) firearms as a necessary component of home safety; (2) fear of accidental/impulsive firearm violence; (3) observed risk and "near misses"; and (4) differing views on home firearms as a source of conflict. Thematic descriptions did not differ according to care partner's relationship to the PWD (adult child, spouse, other).
Conclusions: Considering whether and how to alter access to firearms where PWD reside can be difficult for care partners to navigate. Care partners expressed a desire to limit firearms access, but worried both about creating conflict with the PWD and the self-defense implications of making firearms inaccessible. Findings were similar across subsets of care partners indicating that standardized tools and messaging to care partners may be effective in promoting safety in homes with PWD.
{"title":"Whether and how to store firearms in the home: Qualitative insights from care partner experiences in the Safety in Dementia Trial.","authors":"Christopher E Knoepke, Kayla Meza, Jennifer D Portz, Megan L Ranney, Stacy M Fisher, Faris Omeragic, Emily Greenway, Mirella Castaneda, Daniel D Matlock, Marian E Betz","doi":"10.1111/jgs.19242","DOIUrl":"https://doi.org/10.1111/jgs.19242","url":null,"abstract":"<p><strong>Background: </strong>Most people with dementia (PWD) in the United States live in community settings supported by family and/or unpaid care partners. Firearms access is one of many decisions care partners navigate alongside PWD in efforts to prevent injuries and deaths. Conversations about firearms access are socially challenging, although specific challenges to be overcome have not been described.</p><p><strong>Methods: </strong>As part of the larger Safety in Dementia Trial, we interviewed care partners about their views and experiences regarding firearms access in the home where the PWD resides. Interviewees were English-speaking adults (≥18 years) in the United States who are unpaid care partners of community-dwelling PWD. Responses to interview discussions related to (1) a desire for safety, and (2) fear of firearm violence was analyzed using a focusing process to categorize views into essential themes.</p><p><strong>Results: </strong>Fifty care partners, who were primarily female (58%), White (66%), adult children (56%), and living in the same household (64%), participated in interviews between February 2023-February 2024. Dominant themes emerging from the focusing technique included (1) firearms as a necessary component of home safety; (2) fear of accidental/impulsive firearm violence; (3) observed risk and \"near misses\"; and (4) differing views on home firearms as a source of conflict. Thematic descriptions did not differ according to care partner's relationship to the PWD (adult child, spouse, other).</p><p><strong>Conclusions: </strong>Considering whether and how to alter access to firearms where PWD reside can be difficult for care partners to navigate. Care partners expressed a desire to limit firearms access, but worried both about creating conflict with the PWD and the self-defense implications of making firearms inaccessible. Findings were similar across subsets of care partners indicating that standardized tools and messaging to care partners may be effective in promoting safety in homes with PWD.</p>","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142515462","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Xiaojuan Li, Elizabeth A Bayliss, M Alan Brookhart, Matthew L Maciejewski
Generating real-world evidence about the effect of medication discontinuation or dose reduction on outcomes, such as reduction of adverse drug effects (ADE; intended benefit) and occurrence of adverse drug withdrawal events (ADWE; unintended harm), is crucial to informing deprescribing decisions. Determining the causal effects of deprescribing is difficult for many reasons, including lack of randomization in real-world study designs and other design and measurement issues that pose threats to internal validity. The inherent challenge is how to identify the effects, both intended benefits and unintended harms, of a new medication stoppage or reduction when implemented in patients with many potential clinical and social risks that may influence the likelihood of deprescribing as well as outcomes. We discuss methodological issues of estimating the effect of medication discontinuation or reduction on risk of ADEs and ADWEs considering: (1) sampling study populations of sufficient size with the potential to demonstrate clinically meaningful and quantifiable outcomes, (2) accurate and appropriately timed measurement of covariates, outcomes, and discontinuation, and (3) statistical approaches to managing confounding and other biases inherent in long-term medication use by individuals with multiple morbidities. Designing rigorous deprescribing studies that address internal validity threats will support evidence generation by improving the ability to assess benefits and harms when the exposure of interest is the absence of a medication. Iterative learnings about data quality, variable definition, variable measurement, and exposure-outcome associations will inform strategies to improve the causal inferences possible in real-world deprescribing studies.
{"title":"Assessing causality in deprescribing studies: A focus on adverse drug events and adverse drug withdrawal events.","authors":"Xiaojuan Li, Elizabeth A Bayliss, M Alan Brookhart, Matthew L Maciejewski","doi":"10.1111/jgs.19241","DOIUrl":"10.1111/jgs.19241","url":null,"abstract":"<p><p>Generating real-world evidence about the effect of medication discontinuation or dose reduction on outcomes, such as reduction of adverse drug effects (ADE; intended benefit) and occurrence of adverse drug withdrawal events (ADWE; unintended harm), is crucial to informing deprescribing decisions. Determining the causal effects of deprescribing is difficult for many reasons, including lack of randomization in real-world study designs and other design and measurement issues that pose threats to internal validity. The inherent challenge is how to identify the effects, both intended benefits and unintended harms, of a new medication stoppage or reduction when implemented in patients with many potential clinical and social risks that may influence the likelihood of deprescribing as well as outcomes. We discuss methodological issues of estimating the effect of medication discontinuation or reduction on risk of ADEs and ADWEs considering: (1) sampling study populations of sufficient size with the potential to demonstrate clinically meaningful and quantifiable outcomes, (2) accurate and appropriately timed measurement of covariates, outcomes, and discontinuation, and (3) statistical approaches to managing confounding and other biases inherent in long-term medication use by individuals with multiple morbidities. Designing rigorous deprescribing studies that address internal validity threats will support evidence generation by improving the ability to assess benefits and harms when the exposure of interest is the absence of a medication. Iterative learnings about data quality, variable definition, variable measurement, and exposure-outcome associations will inform strategies to improve the causal inferences possible in real-world deprescribing studies.</p>","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142515459","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Introduction: Despite the influence of caregivers' prognostic understanding (PU) on the end-of-life care for persons with dementia (PwDs), the literature on PU of caregivers of PwDs is sparse. We conducted a scoping review to understand the variation in existing definitions and measurement of caregivers' PU for PwDs. We also aimed to synthesize the prevalence of caregivers' correct PU and the factors (caregiver, PwD and healthcare related) associated with it.
Methods: We systematically searched four databases-MEDLINE/PubMed, EMBASE, SCOPUS, and CINAHL. We included studies where study participants were informal caregivers, their PU was assessed, and measurement tool was implicitly described. We excluded studies where study participants were paid caregivers.
Results: Out of the 2160 studies screened, we included 15 published between 2009 and 2023. The included studies measured caregivers' PU as limited estimated life expectancy, understanding that dementia is incurable and life-limiting. Estimated life expectancy was the most common measure of PU among caregivers to PwDs. Across studies, around 90% of caregivers acknowledged dementia as incurable, while only about 40% acknowledged it as life-limiting. Caregivers of PwDs who were sicker (acute medical problems or functional dependence) and those who had discussed goals of care with healthcare providers were more likely to have more accurate PU for PwDs. Caregivers' with better PU were more likely to state a preference for comfort-focused care, and their PwDs were likely to receive fewer burdensome interventions and experience greater comfort during the dying process.
Conclusion: Our findings highlight the need for a comprehensive measure to assess the multifaceted nature of caregivers' PU, delve deeper into factors influencing caregivers' PU, and explore its impact on caregivers themselves.
导言:尽管护理者的预后理解(PU)对痴呆症患者(PwDs)的临终关怀有影响,但有关痴呆症患者护理者预后理解的文献却很少。我们进行了一次范围综述,以了解对痴呆症患者护理者预后评估的现有定义和测量方法的差异。我们还旨在总结护理人员正确使用 PU 的普遍程度以及与之相关的因素(护理人员、残疾人和医疗保健相关因素):我们系统地检索了四个数据库--MEDLINE/PubMed、EMBASE、SCOPUS 和 CINAHL。我们纳入了研究参与者为非正规护理人员、对其 PU 进行了评估并隐含描述了测量工具的研究。我们排除了研究参与者为有偿照护者的研究:在筛选出的 2160 项研究中,我们纳入了 15 项发表于 2009 年至 2023 年的研究。所纳入的研究以有限的预期寿命来衡量照护者的 PU,因为痴呆症是无法治愈且会限制寿命的疾病。估计预期寿命是衡量残疾人护理者 PU 的最常见指标。在所有研究中,约 90% 的照护者认为痴呆症是不可治愈的,而只有约 40% 的照护者认为痴呆症是有生命限制的。病情较重(有急性医疗问题或功能依赖)的残疾人照护者以及与医疗服务提供者讨论过照护目标的照护者更有可能对残疾人有更准确的 PU。PU较好的照护者更有可能表示倾向于以舒适为重点的照护,其照护的残疾人在临终过程中可能会接受较少的繁琐干预并体验到更多的舒适:我们的研究结果突出表明,需要一种全面的测量方法来评估照护者临终关怀的多面性,深入研究影响照护者临终关怀的因素,并探讨其对照护者自身的影响。
{"title":"Prognostic understanding among caregivers of persons with dementia: A scoping review.","authors":"Ishwarya Balasubramanian, Ellie Bostwick Andres, Louisa Camille Poco, Chetna Malhotra","doi":"10.1111/jgs.19245","DOIUrl":"https://doi.org/10.1111/jgs.19245","url":null,"abstract":"<p><strong>Introduction: </strong>Despite the influence of caregivers' prognostic understanding (PU) on the end-of-life care for persons with dementia (PwDs), the literature on PU of caregivers of PwDs is sparse. We conducted a scoping review to understand the variation in existing definitions and measurement of caregivers' PU for PwDs. We also aimed to synthesize the prevalence of caregivers' correct PU and the factors (caregiver, PwD and healthcare related) associated with it.</p><p><strong>Methods: </strong>We systematically searched four databases-MEDLINE/PubMed, EMBASE, SCOPUS, and CINAHL. We included studies where study participants were informal caregivers, their PU was assessed, and measurement tool was implicitly described. We excluded studies where study participants were paid caregivers.</p><p><strong>Results: </strong>Out of the 2160 studies screened, we included 15 published between 2009 and 2023. The included studies measured caregivers' PU as limited estimated life expectancy, understanding that dementia is incurable and life-limiting. Estimated life expectancy was the most common measure of PU among caregivers to PwDs. Across studies, around 90% of caregivers acknowledged dementia as incurable, while only about 40% acknowledged it as life-limiting. Caregivers of PwDs who were sicker (acute medical problems or functional dependence) and those who had discussed goals of care with healthcare providers were more likely to have more accurate PU for PwDs. Caregivers' with better PU were more likely to state a preference for comfort-focused care, and their PwDs were likely to receive fewer burdensome interventions and experience greater comfort during the dying process.</p><p><strong>Conclusion: </strong>Our findings highlight the need for a comprehensive measure to assess the multifaceted nature of caregivers' PU, delve deeper into factors influencing caregivers' PU, and explore its impact on caregivers themselves.</p>","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142515461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background: Prostate and breast cancer screening are prevalent among older adults, even among those unlikely to benefit. We aimed to evaluate why older adults stop cancer screening, including the role of physician recommendations.
Methods: We used nationally representative data from the 2019 Medicare Current Beneficiary Survey (MCBS). We included women aged 76 and older without a history of breast cancer and men aged 71 and older without a history of prostate cancer. The primary outcome was reason for discontinuing screening, categorized as follows: (1) physician recommendation against screening; (2) absence of a recommendation to screen; and (3) patient-driven reason, such as patient preferences or beliefs. We evaluated reasons for screening discontinuation by health status and educational attainment using age-stratified multinomial logistic regression.
Results: The sample included 7350 participants representing a weighted population of 22,498,715. Overall, 53% of women underwent screening mammography in the past year or intended to continue screening. Among those who stopped screening, 5% reported a recommendation to stop screening from their doctor, 48% reported no recommendation, and 32% reported a patient-driven reason for cessation. Findings did not differ by educational attainment or health status, including among the oldest patients. For men, 61% were screened with PSA in the past year or intended to continue. Among those who stopped, 3% reported a recommendation against screening, 54% reported no recommendation, and 27% reported a patient-driven reason for cessation. Men with higher educational attainment were more likely to report that their physician recommended against screening (4% vs. 1%, p = 0.01) and that their doctor did not recommend screening (58% vs. 47%, p = 0.01). Reasons for screening cessation did not differ by health status, including among the oldest patients.
Conclusions: Cancer screening remains common, even among those with limited potential for benefit, but discussions around screening cessation are rare. Improving communication between patients and physicians may improve screening decision quality.
{"title":"Why do older adults stop cancer screening? Findings from the Medicare Current Beneficiary Survey.","authors":"Olivia H Belliveau, Ilana B Richman","doi":"10.1111/jgs.19239","DOIUrl":"https://doi.org/10.1111/jgs.19239","url":null,"abstract":"<p><strong>Background: </strong>Prostate and breast cancer screening are prevalent among older adults, even among those unlikely to benefit. We aimed to evaluate why older adults stop cancer screening, including the role of physician recommendations.</p><p><strong>Methods: </strong>We used nationally representative data from the 2019 Medicare Current Beneficiary Survey (MCBS). We included women aged 76 and older without a history of breast cancer and men aged 71 and older without a history of prostate cancer. The primary outcome was reason for discontinuing screening, categorized as follows: (1) physician recommendation against screening; (2) absence of a recommendation to screen; and (3) patient-driven reason, such as patient preferences or beliefs. We evaluated reasons for screening discontinuation by health status and educational attainment using age-stratified multinomial logistic regression.</p><p><strong>Results: </strong>The sample included 7350 participants representing a weighted population of 22,498,715. Overall, 53% of women underwent screening mammography in the past year or intended to continue screening. Among those who stopped screening, 5% reported a recommendation to stop screening from their doctor, 48% reported no recommendation, and 32% reported a patient-driven reason for cessation. Findings did not differ by educational attainment or health status, including among the oldest patients. For men, 61% were screened with PSA in the past year or intended to continue. Among those who stopped, 3% reported a recommendation against screening, 54% reported no recommendation, and 27% reported a patient-driven reason for cessation. Men with higher educational attainment were more likely to report that their physician recommended against screening (4% vs. 1%, p = 0.01) and that their doctor did not recommend screening (58% vs. 47%, p = 0.01). Reasons for screening cessation did not differ by health status, including among the oldest patients.</p><p><strong>Conclusions: </strong>Cancer screening remains common, even among those with limited potential for benefit, but discussions around screening cessation are rare. Improving communication between patients and physicians may improve screening decision quality.</p>","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142515463","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Elizabeth M White, Thomas Bayer, Cyrus M Kosar, Christopher M Santostefano, Ulrike Muench, Hyesung Oh, Emily A Gadbois, Pedro L Gozalo, Momotazur Rahman
Background: Accurate and timely diagnosis of dementia is necessary to allow affected individuals to make informed decisions and access appropriate resources. When dementia goes undetected until a hospitalization or nursing home stay, this could reflect delayed diagnosis or misdiagnosis, and may reflect underlying disparities in healthcare access.
Methods: In this retrospective cohort study, we used 2012-2020 Medicare claims and other administrative data to examine variation in setting of dementia diagnosis among fee-for-service Medicare beneficiaries with an initial claims-based dementia diagnosis in 2016. We used multinomial logistic regression to evaluate the association of person and geographic factors with diagnosis location, and Cox proportional hazards regression to examine 4-year survival relative to diagnosis location.
Results: Among 754,204 Medicare beneficiaries newly diagnosed with dementia in 2016, 60.3% were diagnosed in the community, 17.2% in hospitals, and 22.5% in nursing homes. Adjusted 4-year survival rates were significantly lower among those diagnosed in hospitals [-16.1 percentage points (95% CI: -17.0, -15.1)] and nursing homes [-16.8 percentage points (95% CI: -17.7, -15.9)], compared to those diagnosed in the community. Community-diagnosed beneficiaries were more often female, younger, Asian or Pacific Islander, Native American or Alaskan Native, Hispanic, had fewer baseline hospitalizations and higher homecare use, and resided in wealthier ZIP codes. Rural beneficiaries were more likely to be diagnosed in hospitals.
Conclusions: Many older adults are diagnosed with dementia in a hospital or nursing home. These individuals have significantly lower survival than those diagnosed in the community, which may indicate diagnosis during an acute illness or care transition, or at a later disease stage, all of which are suboptimal. These results highlight the need for improved dementia screening in the general population, particularly for individuals in rural areas and communities with higher social deprivation.
{"title":"Differences in setting of initial dementia diagnosis among fee-for-service Medicare beneficiaries.","authors":"Elizabeth M White, Thomas Bayer, Cyrus M Kosar, Christopher M Santostefano, Ulrike Muench, Hyesung Oh, Emily A Gadbois, Pedro L Gozalo, Momotazur Rahman","doi":"10.1111/jgs.19236","DOIUrl":"10.1111/jgs.19236","url":null,"abstract":"<p><strong>Background: </strong>Accurate and timely diagnosis of dementia is necessary to allow affected individuals to make informed decisions and access appropriate resources. When dementia goes undetected until a hospitalization or nursing home stay, this could reflect delayed diagnosis or misdiagnosis, and may reflect underlying disparities in healthcare access.</p><p><strong>Methods: </strong>In this retrospective cohort study, we used 2012-2020 Medicare claims and other administrative data to examine variation in setting of dementia diagnosis among fee-for-service Medicare beneficiaries with an initial claims-based dementia diagnosis in 2016. We used multinomial logistic regression to evaluate the association of person and geographic factors with diagnosis location, and Cox proportional hazards regression to examine 4-year survival relative to diagnosis location.</p><p><strong>Results: </strong>Among 754,204 Medicare beneficiaries newly diagnosed with dementia in 2016, 60.3% were diagnosed in the community, 17.2% in hospitals, and 22.5% in nursing homes. Adjusted 4-year survival rates were significantly lower among those diagnosed in hospitals [-16.1 percentage points (95% CI: -17.0, -15.1)] and nursing homes [-16.8 percentage points (95% CI: -17.7, -15.9)], compared to those diagnosed in the community. Community-diagnosed beneficiaries were more often female, younger, Asian or Pacific Islander, Native American or Alaskan Native, Hispanic, had fewer baseline hospitalizations and higher homecare use, and resided in wealthier ZIP codes. Rural beneficiaries were more likely to be diagnosed in hospitals.</p><p><strong>Conclusions: </strong>Many older adults are diagnosed with dementia in a hospital or nursing home. These individuals have significantly lower survival than those diagnosed in the community, which may indicate diagnosis during an acute illness or care transition, or at a later disease stage, all of which are suboptimal. These results highlight the need for improved dementia screening in the general population, particularly for individuals in rural areas and communities with higher social deprivation.</p>","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142484428","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Zoë Mohan, Mahnaz Khomamizadeh, Joyce M Li, Paula A Rochon
{"title":"What's old is new again: Affordable, community-based housing options for older women.","authors":"Zoë Mohan, Mahnaz Khomamizadeh, Joyce M Li, Paula A Rochon","doi":"10.1111/jgs.19230","DOIUrl":"https://doi.org/10.1111/jgs.19230","url":null,"abstract":"","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142484437","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Dermatoporosis in a portrait by Eero Järnefelt (1863-1937).","authors":"Nicolas Kluger","doi":"10.1111/jgs.19240","DOIUrl":"https://doi.org/10.1111/jgs.19240","url":null,"abstract":"","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142484427","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rebecca J Howe, Jane A Driver, Christine S Ritchie, Ellen M McCreedy, Jennifer L Sullivan
{"title":"Let home care be the GUIDE: Integrating quality dementia care into existing home care teams.","authors":"Rebecca J Howe, Jane A Driver, Christine S Ritchie, Ellen M McCreedy, Jennifer L Sullivan","doi":"10.1111/jgs.19237","DOIUrl":"https://doi.org/10.1111/jgs.19237","url":null,"abstract":"","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142484433","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rasheeda Hall, Nidhi Ghildayal, Ilana Mittleman, Megan Huisingh-Scheetz, Jennifer S Scherer, Mara McAdams-DeMarco
{"title":"Kidney Disease Aging Research Collaborative (KDARC): Addressing barriers in geriatric nephrology research.","authors":"Rasheeda Hall, Nidhi Ghildayal, Ilana Mittleman, Megan Huisingh-Scheetz, Jennifer S Scherer, Mara McAdams-DeMarco","doi":"10.1111/jgs.19229","DOIUrl":"10.1111/jgs.19229","url":null,"abstract":"","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142484431","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Arne van den Bosch, Radboud M Marijnissen, Denise J C Hanssen, Richard C Oude Voshaar
Background: The number of patients with dementia who are granted euthanasia or assisted suicide (EAS) increases yearly in the Netherlands. By law, patients need to be decisionally competent or have an advance directive. Assessment of decisional capacity is challenging as dementia progressively affects cognitive performance. We aimed to assess qualitatively which factors, and how, influence the judgment of decisional capacity in EAS cases with dementia.
Methods: We performed a qualitative study of 60 dementia EAS case summaries published by the Dutch regional euthanasia review committees between 2012 and 2021. Included reports were evaluated using the grounded theory approach. All quotes related to decisional capacity were coded independently by two researchers and compared in an iterative process to formulate an overarching framework on the assessment of decisional capacity. We selected 20 patients who had an advance directive and were judged to be decisionally compromised, as well as a selection of 40 EAS cases judged to be decisionally competent, half of which also had an advance directive (purposive sampling).
Results: Decisional capacity was present in every case report. Predefined, external criteria were rarely described explicitly, but physicians indirectly referred to the (cognitive) criteria set by Appelbaum and Grisso. Whether the thresholds for these dimensional criteria were met was influenced by six supporting factors (level of communication, psychiatric comorbidity, personality, presence of an advance directive, consistency of the request, and, finally, the patient-physician relationship) that also directly contributed to the judgment of capacity. The involved physicians and executed investigations were the two contextual factors providing a background.
Conclusions: Decisional capacity regarding euthanasia is a multidimensional construct, often implicitly assessed and influenced by supporting and contextual factors. The subjectivity of the final judgment poses ethical and legal issues and argues for continuous quality improvement processes.
背景:在荷兰,获准安乐死或协助自杀(EAS)的痴呆症患者人数逐年增加。根据法律规定,患者需要具备决策能力或预先指示。由于痴呆症会逐渐影响患者的认知能力,因此评估患者的决策能力具有挑战性。我们旨在定性评估哪些因素以及如何影响对痴呆症 EAS 病例决策能力的判断:我们对荷兰地区安乐死审查委员会在 2012 年至 2021 年间发布的 60 份痴呆症安乐死案例摘要进行了定性研究。我们采用基础理论方法对纳入的报告进行了评估。所有与决定能力相关的引文均由两名研究人员独立编码,并通过反复比较,最终制定出一个评估决定能力的总体框架。我们选取了 20 名有预先指示且被判定为决策能力受损的患者,并选取了 40 个被判定为有决策能力的 EAS 病例,其中一半也有预先指示(目的性抽样):结果:每份病例报告中都存在决策能力问题。预设的外部标准很少被明确描述,但医生间接提到了阿贝尔鲍姆(Appelbaum)和格里斯索(Grisso)制定的(认知)标准。是否符合这些维度标准的阈值受到六个辅助因素的影响(沟通水平、精神疾病合并症、性格、是否有预先指示、请求的一致性,以及最后的医患关系),这些因素也直接影响了对行为能力的判断。参与调查的医生和已执行的调查是两个背景因素:关于安乐死的决定能力是一个多维度的概念,通常是隐性评估,并受到支持因素和背景因素的影响。最终判断的主观性带来了伦理和法律问题,因此需要不断改进质量。
{"title":"Capacity assessment for euthanasia in dementia: A qualitative study of 60 Dutch cases.","authors":"Arne van den Bosch, Radboud M Marijnissen, Denise J C Hanssen, Richard C Oude Voshaar","doi":"10.1111/jgs.19218","DOIUrl":"https://doi.org/10.1111/jgs.19218","url":null,"abstract":"<p><strong>Background: </strong>The number of patients with dementia who are granted euthanasia or assisted suicide (EAS) increases yearly in the Netherlands. By law, patients need to be decisionally competent or have an advance directive. Assessment of decisional capacity is challenging as dementia progressively affects cognitive performance. We aimed to assess qualitatively which factors, and how, influence the judgment of decisional capacity in EAS cases with dementia.</p><p><strong>Methods: </strong>We performed a qualitative study of 60 dementia EAS case summaries published by the Dutch regional euthanasia review committees between 2012 and 2021. Included reports were evaluated using the grounded theory approach. All quotes related to decisional capacity were coded independently by two researchers and compared in an iterative process to formulate an overarching framework on the assessment of decisional capacity. We selected 20 patients who had an advance directive and were judged to be decisionally compromised, as well as a selection of 40 EAS cases judged to be decisionally competent, half of which also had an advance directive (purposive sampling).</p><p><strong>Results: </strong>Decisional capacity was present in every case report. Predefined, external criteria were rarely described explicitly, but physicians indirectly referred to the (cognitive) criteria set by Appelbaum and Grisso. Whether the thresholds for these dimensional criteria were met was influenced by six supporting factors (level of communication, psychiatric comorbidity, personality, presence of an advance directive, consistency of the request, and, finally, the patient-physician relationship) that also directly contributed to the judgment of capacity. The involved physicians and executed investigations were the two contextual factors providing a background.</p><p><strong>Conclusions: </strong>Decisional capacity regarding euthanasia is a multidimensional construct, often implicitly assessed and influenced by supporting and contextual factors. The subjectivity of the final judgment poses ethical and legal issues and argues for continuous quality improvement processes.</p>","PeriodicalId":94112,"journal":{"name":"Journal of the American Geriatrics Society","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142484425","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}