Dataset Information

Family Perceptions of Quality of End-of-Life Care for Veterans with Advanced CKD.

ABSTRACT: 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.

SUBMITTER: Richards CA

PROVIDER: S-EPMC6730503 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Family Perceptions of Quality of End-of-Life Care for Veterans with Advanced CKD.

Richards Claire A CA Liu Chuan-Fen CF Hebert Paul L PL Ersek Mary M Wachterman Melissa W MW Reinke Lynn F LF Taylor Leslie L LL O'Hare Ann M AM

Clinical journal of the American Society of Nephrology : CJASN 20190829 9

<h4>Background and objectives</h4>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.<h4>Design, setting, participants, & measurements</h4>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 ...[more]

PMID: 31466952

Similar Datasets

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:BACKGROUND:Clinical practice guidelines recommend referral to nephrology when estimated glomerular filtration rate (eGFR) decreases to <30mL/min/1.73m2; however, evidence for benefits of nephrology care are mixed. STUDY DESIGN:Observational cohort using landmark analysis. SETTINGS & PARTICIPANTS:A national cohort of veterans with advanced chronic kidney disease, defined as an outpatient eGFR?30mL/min/1.73m2 for January 1, 2010, through December 31, 2010, and a prior eGFR<60mL/min/1.73m2, using administrative and laboratory data from the Department of Veterans Affairs and the US Renal Data System. PREDICTOR:Receipt and frequency of outpatient nephrology care over 12 months. OUTCOMES:Survival and progression to end-stage renal disease (ESRD; receipt of dialysis or kidney transplantation) were the primary outcomes. In addition, control of associated clinical parameters over 12 months were intermediate outcomes. RESULTS:Of 39,669 patients included in the cohort, 14,983 (37.8%) received nephrology care. Older age, heart failure, dementia, depression, and rapidly declining kidney function were independently associated with the absence of nephrology care. During a mean follow-up of 2.9 years, 14,719 (37.1%) patients died and 4,310 (10.9%) progressed to ESRD. In models adjusting for demographics, comorbid conditions, and trajectory of kidney function, nephrology care was associated with lower risk for death (HR, 0.88; 95% CI, 0.85-0.91), but higher risk for ESRD (HR, 1.48; 95% CI, 1.38-1.58). Among patients with clinical parameters outside guideline recommendations at cohort entry, a significantly higher adjusted proportion of patients who received nephrology care had improvement in control of hemoglobin, potassium, albumin, calcium, and phosphorus concentrations compared with those who did not receive nephrology care. LIMITATIONS:May not be generalizable to nonveterans. CONCLUSIONS:Among patients with advanced chronic kidney disease, nephrology care was associated with lower mortality, but was not associated with lower risk for progression to ESRD.

Project description:Even 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?This 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.Outcome 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.These 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:Rationale & objectiveOlder patients with advanced chronic kidney disease (CKD) use intensive care at the end of life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non-dialysis-dependent population.Study designIn-person interviewer-administered surveys of patients 70 years and older with non-dialysis-dependent CKD stage 4 or 5 and their self-identified care partners.Setting & participants42 participants (31 patients, 11 care partners) at 2 clinical sites in greater Boston.OutcomesCompletion of advance directives and self-reported perceptions, preferences, and experiences of ACP.Analytical approachDescriptive analysis of patient and care partner surveys. McNemar test analysis to compare patient and care partner responses.ResultsMost patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians' judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with 2 hypothetical scenarios (stroke/heart attack or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team.LimitationsSingle metropolitan area; most patients did not identify a care partner; nonresponse bias and small sample size.ConclusionsPatients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.

Project description:ObjectiveGiven the challenges of patient-provider communication in neurocritical care lacking robust decision-making tools on prognostication, we investigated concordance in perceptions of communication among participants in family discussions and assess the different domains of communication that affect these perceptions.MethodsProspective observational study conducted over 4 months in a tertiary-level academic medical center neurocritical care unit. Our study involved family discussions regarding plan of care for admitted patients observed by a neutral observer. All participants completed a survey. The first four questions rated the understanding of the discussion and general satisfaction; the remaining questions were open-ended to assess the quality of communication by the physician leading the discussion. Responses were scored and compared among participants using a Likert scale. A difference of < 1 in scores among participants was rated as concordance, whereas that of > 1 was designated as discordance. All open-ended responses were classified into six domains.ResultsWe observed 35 family discussions. Questions 1 to 3 inquiring on general satisfaction, impact, and understanding of treatment options yielded 99 cross-comparisons per question (297 compared responses). Most responses were either "Strongly Agree" or "Agree," with "Neutral" or "Disagree" responses being more prevalent in Question 2 regarding the impact of the conversation. Overall concordance of responses between participants was 88% with a lower rate of concordance (72%) on Q2. Further open-ended questions queried observers on specific physician-spoken content, and answers were analyzed to identify domains that affected the perception of quality of communication. Education was the most frequently cited domain of communication in response to open-ended questions. Among family and neutral observers, empathy was frequently listed, whereas providers more often listed family engagement.ConclusionOverall, satisfaction was high among providers, families, and the observer regarding the quality of communication during family discussions in the unit. Perceptual differences emerged over whether this communication impacted healthcare decision-making during that encounter.

Dataset Information

Family Perceptions of Quality of End-of-Life Care for Veterans with Advanced CKD.

Publications

Family Perceptions of Quality of End-of-Life Care for Veterans with Advanced CKD.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets