Dataset Information

Late Transitions and Bereaved Family Member Perceptions of Quality of End-of-Life Care.

ABSTRACT: OBJECTIVES:To examine associations between healthcare transitions at the end of life (EOL; late transitions) and bereaved family members' and friends' assessment of EOL quality of care (QOC). DESIGN:National Health and Aging Trends Study (NHATS), a prospective cohort of Medicare enrollees aged 65 and older. SETTING:United States, all sites of death. PARTICIPANTS:Family members and close friends of decedents from NHATS Rounds 2 through 6 (N=1,653; weighted 6.0 million Medicare deaths). MEASUREMENTS:Multivariable logistic regression with survey weights was used to examine the association between having a late transition and reports of perceived unmet needs for symptom management, spiritual support, concerns with communication, and overall QOC. RESULTS:Seventeen percent of decedents had a late transition. Bereaved respondents for decedents experiencing late transitions were more likely to report that the decedent was treated without respect (21.3% vs 15.6%; adjusted odds ratio (AOR)=1.59, 95% confidence interval (CI)=1.09-2.33), had more unmet needs for spiritual support (67.4% v 55.2%; AOR=1.48, 95% CI=1.03-2.13), and were more likely to report they were not kept informed about the person's condition (31.0% vs 20.9%; AOR=1.54, 95% CI=1.07-2.23). Bereaved respondents were less likely to rate QOC as excellent when there was a late transition (43.6% vs 48.2%; AOR=0.79, 95% CI=0.58-1.06). Subgroup analyses of those experiencing a transition between a nursing home and hospital (13% of all late transitions) revealed such transitions to be associated with even worse QOC. CONCLUSION:Transitions in the last 3 days of life are associated with more unmet needs, higher rate of concerns, and lower rating of QOC than when such late transitions are absent, especially when that transition is between a nursing home and hospital.

SUBMITTER: Makaroun LK

PROVIDER: S-EPMC6156998 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature

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Late Transitions and Bereaved Family Member Perceptions of Quality of End-of-Life Care.

Makaroun Lena K LK Teno Joan M JM Freedman Vicki A VA Kasper Judith D JD Gozalo Pedro P Mor Vincent V

Journal of the American Geriatrics Society 20180704 9

<h4>Objectives</h4>To examine associations between healthcare transitions at the end of life (EOL; late transitions) and bereaved family members' and friends' assessment of EOL quality of care (QOC).<h4>Design</h4>National Health and Aging Trends Study (NHATS), a prospective cohort of Medicare enrollees aged 65 and older.<h4>Setting</h4>United States, all sites of death.<h4>Participants</h4>Family members and close friends of decedents from NHATS Rounds 2 through 6 (N=1,653; weighted 6.0 million ...[more]

PMID: 29972587

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Project description:BACKGROUND AND OBJECTIVES:Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care. RESULTS:Overall, 52% of cohort members spent ?2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns. CONCLUSIONS:Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.

Project description:ImportanceMedicare Advantage (MA) insures an increasing proportion of Medicare beneficiaries, but evidence is lacking on patient or family perceptions of the quality of end-of-life care in MA vs traditional Medicare.ObjectiveTo determine if there is a difference in quality of care reported by family and friends of individuals who died while insured by MA vs traditional Medicare at the end of life.Design, setting, and participantsThis cross-sectional study used the 2011 to 2017 Medicare-linked National Health and Aging Trends Study to conduct population-based survey research representing 8 668 829 Medicare enrollees. Included individuals were 2119 enrollees who died when aged 65 years or older, with quality of care reported by a family member or close friend familiar with the individual's last month of life. Analysis was conducted in July 2020.ExposuresMA enrollment at the time of death or before hospice enrollment.Main outcomes and measuresPerception of end-of-life care was measured with 9 validated items, with the primary outcome variable being overall care rated not excellent. We conducted a propensity score-weighted multivariable model to examine the association of each item with MA vs traditional Medicare enrollment. The propensity score and multivariable model included covariates capturing demographic and socioeconomic factors, function and health, and relationship of the respondent to the individual who died. The sample was then stratified by hospice enrollment and setting of care in the last month.ResultsOf 2119 people in the sample, 670 individuals were enrolled in MA at the time of death or prior to hospice (32.7%) and 1449 were enrolled in traditional Medicare (67.3%). In survey-weighted percentages, 53.6% (95% CI, 51.0% to 56.1%) were women and 43.4% (95% CI, 41.5% to 45.3%) were older than 85 years at the time of death. In the adjusted model, family and friends of individuals in MA were more likely to report that care was not excellent (odds ratio, 1.28; 95% CI, 1.01 to 1.61; P = .04) and that they were not kept informed (odds ratio, 1.48; 95% CI, 1.06 to 2.05; P = .02). For those in nursing homes, there was an estimated probability of 57.2% of respondents reporting that care was not excellent for individuals with traditional Medicare, compared with 77.9% of respondents for individuals with MA (marginal increase for those in MA, 0.21; 95% CI, 0.08 to 0.32; P = .001).Conclusions and relevanceIn this cross-sectional study of people who died while enrolled in Medicare, friends and family of those in MA reported lower-quality end-of-life care compared with friends and family of those enrolled in traditional Medicare. These findings suggest that, given the rapid growth of MA, Medicare should take steps to ensure that MA plans are held accountable for quality of care at the end of life.

Project description:ObjectiveEven though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting?MethodsThis study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.ResultsOutcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.ConclusionThese interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.

Project description:Background/objectiveThe COVID-19 pandemic has resulted in rapid changes to end-of-life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families' perceptions of the quality of end-of-life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID-19 pandemic.DesignQualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March-June 2020. Data were analyzed using qualitative content analysis.SettingVA medical centers with the highest numbers of COVID-19 cases during the study period.ParticipantsNext-of-kin of 328 Veterans who died in one of 37 VA medical centers' acute care, intensive care, nursing home, or hospice units.MeasurementsOpen-ended survey questions (response rate = 37%) about family member's perceptions of: (1) communication with the healthcare team about the patient, (2) communication with the patient, and (3) use of remote communication technologies.ResultsBereaved family members identified contextual factors perceived to impact communication quality including: allowing family at the bedside when death is imminent, fears that the patient died alone, and overall perceptions of VA care. Characteristics of perceived high-quality communication included staff availability for remote communication and being kept informed of the patient's condition and plan of care. Low-quality communication with staff was perceived to result from limited access to staff, insufficient updates regarding the patient's condition, and when the family member was not consulted about care decision-making. Communication quality with the patient was facilitated or impeded by the availability and use of video-enabled remote technologies.ConclusionCommunication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in-person visitation. Families report that low-quality communication causes profound distress that can affect the quality of dying and bereavement. Innovative strategies are needed to ensure that high-quality communication occurs despite pandemic-related visitation restrictions.

Dataset Information

Late Transitions and Bereaved Family Member Perceptions of Quality of End-of-Life Care.

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Late Transitions and Bereaved Family Member Perceptions of Quality of End-of-Life Care.

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