Does hospice improve quality of care for persons dying from dementia?
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ABSTRACT:
SUBMITTER: Teno JM
PROVIDER: S-EPMC3724341 | biostudies-literature | 2011 Aug
REPOSITORIES: biostudies-literature
Publications
Does hospice improve quality of care for persons dying from dementia?
Teno Joan M JM Gozalo Pedro L PL Lee Ian C IC Kuo Sylvia S Spence Carol C Connor Stephen R SR Casarett David J DJ
Journal of the American Geriatrics Society 20110728 8
<h4>Objectives</h4>To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members.<h4>Design</h4>Mortality follow-back survey.<h4>Setting</h4>Death certificates were drawn from five states (AL, FL, TX, MA, and MN).<h4>Participants</h4>Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death.<h4>Measurements</h4>Ratings of the quality of end-of-life care, perceptions of ...[more]
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Project description:IntroductionAccelerating rates of dementia worldwide coupled with older adults living longer in the community calls for greater focus on quality home care support services. Few frameworks for quality dementia home care exist though prior findings have found elements considered to be important for "good" home care for people living with dementia. This study aimed to identify core components of a quality home care experience for people with dementia and their caregivers.MethodsAs part of a larger research study, in-depth interviews were conducted with persons living with dementia and caregivers (n = 25) to explore hospital-to-home care transitions. The design used for this study was a qualitative description. We used deductive-inductive thematic analysis, which was informed by previous work in this area. Open codes were mapped to pre-determined themes, and for codes not accommodated by an a piori framework, new themes were developed.FindingsOur findings resulted in 4 overarching themes. Two themes were identified deductively (Availability and Acceptability of Home Care Services) and two inductively (Adaptability and Affordability of Home Care Services). Findings highlight the roles of family-care provider partnerships and responsive support in receiving quality home care, and the cost associated with unmet needs.InterpretationWith an aging population, an increase in home care client acuity, and post-COVID-19 concerns over long-term care, more attention is needed to improve the quality of home care. The demand for these services will continue to increase particularly for those living with dementia and their families. The findings of availability, acceptability, adaptability, and affordability as core to quality care can help lay the groundwork for a home care framework for persons living with dementia and their caregivers. Future research could benefit from comparative analyses to evaluate the applicability of the findings to non-dementia home care service users and caregivers.
| S-EPMC9469964 | biostudies-literature
Project description:BackgroundHospice care was initially designed for seriously ill individuals with cancer. Thus, the model and clinicians were geared toward caring for this population. Despite the proportion of persons living with dementia (PLWD) receiving hospice care substantially increased over the past 10 years, and their longer lengths of stay, established hospice interventions for this population are scarce. No systematic review has previously evaluated those interventions that do exist. We synthesized hospice intervention studies for PLWD, their families, and hospice professionals by describing the types of interventions, participants, outcomes, and results; assessing study quality; and identifying promising intervention strategies.MethodsA systematic review was conducted using a comprehensive search of five databases through March 2021 and follow-up hand searches. Included studies were peer-reviewed, available in English, and focused on hospice interventions for persons with dementia, and/or care partners, and clinicians. Using pre-determined inclusion and exclusion criteria, data was extracted guided by the Cochrane Checklist, and quality was assessed using a 26-item Consolidated Standards of Reporting Trials (CONSORT) Checklist.ResultsThe search identified 3235 unique studies in total, of which 10 studies met inclusion criteria. The search revealed three types of interventions: clinical education and training, usual care plus care add-on services, and "other" delivered to 707 participants (mostly clinicians). Five studies included underrepresented racial and ethnic groups. Outcomes measured knowledge and skills, psychosocial and health outcomes, feasibility, and acceptability, with significant improvements in six studies. Study quality was reflective of early-stage research with clinical education and training strategies showing deliberate progression towards real-world efficacy testing.ImplicationsHospice interventions for PLWD are sparse and in early-phase research. More research is needed with rigorous designs, diverse samples, and outcomes considering the concordance of care.
| S-EPMC9283206 | biostudies-literature
Project description:BackgroundPatients approaching the end of their life do not experience their existential and spiritual needs being sufficiently met by the healthcare professionals responsible for their care. Research suggest that this is partly due to a lack of insight about spiritual care among healthcare professionals. By developing, implementing, and evaluating a research-based educational course on spiritual care targeting hospice staff, we aimed to explore the perceived barriers for providing spiritual care within a hospice setting and to evaluate the post-course impact among staff members.MethodsCourse development and evaluation was based on primary exploratory action research and followed the UK Medical Research Council's framework for complex intervention research. The course was implemented at two Danish hospices and comprised thematic days that included lectures, reflective exercises and improvised participatory theatre. We investigated the course impact using a questionnaire and focus group interviews. The questionnaire data were summarized in bar charts and analysis of the transcribed interviews was performed based on Interpretative Phenomenological Analysis.Results85 staff members participated in the course. Of these, 57 answered the evaluative questionnaire and 15 participated in 5 focus group interviews. The course elements that the participants reported to be the most relevant were improvised theatre unfolding existential themes and reflexive group activities. 98% of participants found the course relevant, answering either "relevant" or "very relevant". 73,1% of participants answered "to a considerable extent" or "to a great extent" when asked to what extent they assessed the content of the course to influence their work in hospice. The focus group data resulted in 3 overall themes regarding perceived barriers for providing spiritual care: 1. Diverse approaches is beneficial for spiritual care, but the lack of a shared and adequate spiritual language is a communicative barrier, 2. Existential conversation is complicated by patients' overlapping physical and existential needs, as well as miscommunication, and 3. Providing spiritual care requires spiritual self-reflection, self-awareness, introspection, and vulnerability.ConclusionsThis study provides insights into the barriers facing spiritual care in a hospice setting. Furthermore, the course evaluations demonstrate the valuable impact of spiritual care training for health care professionals. Further course work development is warranted to enhance the "science" of spiritual care for the dying.
| S-EPMC8286591 | biostudies-literature
Project description:ObjectivesUse of hospice care among patients with dementia has been steadily increasing. Our objectives were to characterize quality of hospice care experiences among decedents who had a primary diagnosis of dementia and their caregivers and investigate differences across settings of hospice care.DesignWe analyzed Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from caregiver respondents whose family members received hospice care.Setting and participantsData from 96,845 caregiver respondents whose family members had a primary diagnosis of dementia and died in 2017 or 2018 while receiving hospice care in 2829 hospices.MethodsWe calculated quality measure scores overall and stratified by setting, adjusting for mode of survey administration and differences in case mix, and examined variability in hospice-level scores among decedents with dementia.ResultsMean quality measure scores ranged from 69.0 (Getting Hospice Care Training) to 90.9 (Getting Emotional Support). Measure scores varied significantly across settings, with caregivers of decedents who received care in a nursing home (NH), acute care hospital (ACH), or assisted living facility (ALF) consistently reporting poorer quality of care. Hospice-level scores varied substantially, with a wide range between the 10th and 90th percentiles of hospice performance (eg, 25 points).Conclusions and implicationsThere are important opportunities to improve hospice care for patients with dementia and their caregivers, particularly with respect to caregiver training, symptom management, and across all dimensions within the NH, ACH, and ALF settings. Variability in care experiences across hospices, as well as long lengths of stay for those with dementia, highlight the importance of informed and timely hospice referral.
| S-EPMC10372780 | biostudies-literature
Project description:BackgroundDementia palliative care is increasingly subject of research and practice improvement initiatives.AimTo assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers.DesignCombined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019.Setting/participantsFamily caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region.ResultsThe mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased.ConclusionWe identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.
| S-EPMC8637361 | biostudies-literature
Project description:Background and objectivesHospitalized persons living with dementia are at risk for functional decline, behavioral symptoms of distress, and delirium, all persisting in the postacute period. In turn, family care partners (FCPs) experience increased anxiety and lack of preparedness for caregiving, compounding existing strain and burden. Family-centered Function-focused Care (Fam-FFC) purposefully engages FCPs in assessment, decision-making, care delivery, and evaluation of function-focused care during and after hospitalization (within 48 hours of discharge, weekly telephone calls for a total of 7 additional weeks, then monthly for 4 months). The objective of this study was to test the efficacy of Fam-FFC.Research design and methodsA cluster randomized controlled trial included 455 dyads of persons living with dementia and FCPs in 6 medical units in 3 hospitals. Patient outcomes included return to baseline physical function, behavioral symptoms of distress, depressive symptoms, and delirium severity. Family care partner measures included preparedness for caregiving, anxiety, strain, and burden.ResultsMultilevel level modeling demonstrated that the likelihood of returning to baseline function across time for Fam-FFC participants was twice that of the control group by the end of 6 months (OR = 2.4, p = .01, 95% CI 1.2-4.7). Family-centered Function-focused Care was also associated with fewer symptoms of distress (b = -1.1, SE = 0.56, p = .05) but no differences in the amount of moderate physical activity, depressive symptoms, and delirium severity. Preparedness for caregiving increased significantly only from 2 to 6 months (b = 0.89, SE = 0.45, d = 0.21, overall p = .02) in the intervention group, with no group differences in anxiety, strain, and burden.Discussion and implicationsFamily-centered Function-focused Care may help prevent some of the postacute functional decline and behavioral symptoms in hospitalized persons living with dementia. Further research is needed to promote sustained improvements in these symptoms with more attention to the postacute needs of the care partner.
| S-EPMC10573730 | biostudies-literature
Project description:Discrepancies between needed and received hospice care exist, especially in rural areas. Hospice care quality ratings for 743 rural and urban patients and their families were compared. Rural participants reported higher overall satisfaction and with pain/symptom management. Regardless of geographic location, satisfaction was higher when patients were informed and emotionally supported. Patients and family ratings did not differ. Findings support prior reports using retrospective rather than our study's point-of-care surveys.
| S-EPMC4582410 | biostudies-literature
Project description:Background/objectiveMedicare Advantage (MA) and Accountable Care Organizations (ACOs) operate under incentives to reduce burdensome and costly care at the end of life. We compared end-of-life care for persons with dementia who are in MA, ACOs, or traditional Medicare (TM).Design, setting, and participantsRetrospective study of decedents with dementia enrolled in MA, attributed to an ACO, or in TM. Decedents had a nursing home stay between 91 and 180 days prior to death, two or more functional impairments, and mild to severe cognitive impairment.MeasurementsHospitalization, invasive mechanical ventilation (IMV) use, and in-hospital death in the last 30 days of life reported in Medicare billing.ResultsAmong 370,094 persons with dementia, 93,801 (25.4%) were in MA (mean age [SD], 86.9 [7.7], 67.6% female), 39,586 (10.7%) were ACO attributed (mean age [SD], 87.2 [7.6], 67.3% female), and 236,707 (63.9%) were in TM (mean age [SD], 87.0 [7.8], 67.6% female). The proportion hospitalized in the last 30 days of life was higher among TM enrollees (27.9%) and those ACO attributed (28.1%) than among MA enrollees (20.5%, p ≤ 0.001). After adjustment for socio-demographics, cognitive and functional impairments, comorbidities, and Hospital Referral Region, adjusted odds of hospitalization in the 30 days prior to death was 0.72 (95% confidence interval [CI] 0.70-0.74) among MA enrollees and 1.05 (95% CI 1.02-1.09) among those attributed to ACOs relative to TM enrollees. Relative to TM, the adjusted odds of death in the hospital were 0.78 (95% CI 0.75-0.81) among MA enrollees and 1.02 (95% CI 0.96-1.08) for ACO participants. Dementia decedents in MA had a lower likelihood of IMV use (adjusted odds ratio 0.80, 95% CI 0.75-0.85) compared to TM.ConclusionsAmong decedents with dementia, MA enrollees but not decedents in ACOs experienced less costly and potentially burdensome care compared with those with TM. Policy changes are needed for ACOs.
| S-EPMC8497397 | biostudies-literature
Project description:BackgroundThere are challenges in healthcare service delivery in rural areas, and this may be especially true for persons with dementia, who have higher needs to access to the healthcare system, and may have difficulties to commute easily and safely to these services. There is a growing body of literature regarding geographical disparities, but there is no comprehensive systematic review of geographical differences in persons with dementia across all domains of care quality. Therefore, the objective of this study is to conduct a systematic review of the literature on rural and urban differences in quality of dementia care outcomes of persons with dementia across all quality-of-care domains.MethodsWe performed a digital search in Ovid MEDLINE on July 16, 2019, updated on May 3, 2021, for French or English records. We selected studies that reported outcome from at least one domain of quality of dementia care (Access, Integration, Effective Care, Efficient Care, Population Health, Safety, and Patient-Centered) in both rural and urban persons with dementia or caregivers. We used rigorous, systematic methods for screening, selection, data extraction and we analyzed outcomes reported by at least two studies using vote counting and appraised the certainty of evidence. Finally, we explored sources of heterogeneity.ResultsFrom the 38 included studies, we found differences in many dementia care domains. Rural persons with dementia had higher mortality rates (Population Health), lower visits to any physicians (Access), more hospitalizations but shorter stays (Integration), higher antipsychotic medications (Safety), lower use of home care services and higher use of nursing home (Patient-Centered Care) compared to urban persons with dementia.ConclusionsThis comprehensive portrait of rural-urban differences in dementia care highlights possible geographically based inequities and can be used by researchers and decision makers to guide development of more equitable dementia care policies.
| S-EPMC9887943 | biostudies-literature
Project description:Despite pervasive and debilitating pain among elders, it is underassessed and undertreated; and cognitive impairment can add challenges. We assessed the quality of pain care for community-dwelling elderly patients with dementia.We phone interviewed 203 Veterans Affairs primary care outpatients with dementia and pain and reviewed medical records to score 15 quality indicators of pain assessment and management.Pain assessment was documented for 98%, and a standard pain scale was used for 94%. Modified pain scales were rarely used. Though 70% self-reported pain of 'quite bad' or worse, charts documented no pain in 64%. When pain was identified, treatment was offered to 80%; but only 59% had a follow-up assessment within 6 months. Nonpharmacological interventions were underused.Community-dwelling elders with dementia are underdiagnosed and undertreated for pain.
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