Dataset Information

Identifying elements of ICU care that families report as important but unsatisfactory: decision-making, control, and ICU atmosphere.

ABSTRACT:

Background

One in fi ve deaths in the United States occurs in the ICU, and many of these deaths are experienced as less than optimal by families of dying people. The current study investigated the relationship between family satisfaction with ICU care and overall ratings of the quality of dying as a means of identifying targets for improving end-of-life experiences for patients and families.

Methods

This multisite cross-sectional study surveyed families of patients who died in the ICU in one of 15 hospitals in western Washington State. Measures included the Family Satisfaction in the ICU (FS-ICU) and the Single-Item Quality of Dying (QOD-1) questionnaires. Associations between FS-ICU items and the QOD-1 were examined using multivariate linear regression controlling for patient and family demographics and hospital site.

Results

Questionnaires were returned for 1,290 of 2,850 decedents (45%). Higher QOD-1 scores were significantly associated (all P < .05) with (1) perceived nursing skill and competence (β= 0.15), (2) support for family as decision-makers ( β= 0.10), (3) family control over the patient’s care( β= 0.18), and (4) ICU atmosphere (β= 0.12). FS-ICU items that received low ratings and correlated with higher QOD-1 scores (ie, important items with room for improvement) were (1) support of family as decision-maker, (2) family control over patient’s care, and (3) ICU atmosphere.

Conclusions

Increased support for families as decision-makers and for their desired level of control over patient care along with improvements in the ICU atmosphere were identified as aspects of the ICU experience that may be important targets for quality improvement.

Trial registry

ClinicalTrials.gov; No.: NCT00685893; URL: www.clinicaltrials.gov.

SUBMITTER: Osborn TR

PROVIDER: S-EPMC3494471 | biostudies-literature | 2012 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Identifying elements of ICU care that families report as important but unsatisfactory: decision-making, control, and ICU atmosphere.

Osborn Tristan R TR Curtis J Randall JR Nielsen Elizabeth L EL Back Anthony L AL Shannon Sarah E SE Engelberg Ruth A RA

Chest 20121101 5

<h4>Background</h4>One in fi ve deaths in the United States occurs in the ICU, and many of these deaths are experienced as less than optimal by families of dying people. The current study investigated the relationship between family satisfaction with ICU care and overall ratings of the quality of dying as a means of identifying targets for improving end-of-life experiences for patients and families.<h4>Methods</h4>This multisite cross-sectional study surveyed families of patients who died in the ...[more]

PMID: 22661455

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Project description:ImportanceSurrogate misunderstanding of patient survival prognosis in the intensive care unit (ICU) is associated with poor patient and surrogate outcomes. Shared decision-making (SDM) may reduce misunderstanding.ObjectiveTo evaluate the association between SDM-aligned communication and prognostic misunderstanding.Design, setting, and participantsThis retrospective cohort study was conducted at 13 medical and surgical ICUs at 5 hospitals in North Carolina, Pennsylvania, and Washington between December 2012 and January 2017. Participants were surrogates of adult patients receiving prolonged mechanical ventilation and ICU physicians. Analysis was performed May to November 2023.ExposureSDM-aligned communication during ICU family meetings, defined as the presence of high-quality serious illness communication behaviors aligned with SDM principles.Main outcomes and measuresThe primary outcome was postmeeting surrogate prognostic misunderstanding, defined as the absolute difference between the physician's estimate of survival prognosis and the surrogate's perception of that estimate (range, 0-100 percentage points). The secondary outcome was postmeeting physician misunderstanding, defined as the absolute difference between a surrogate's estimate of survival prognosis and the physician's perception of that estimate (range, 0-100 percentage points). Prognostic misunderstanding of 20 percentage points or greater was considered clinically significant as in prior work.ResultsOf 137 surrogates, most were female (102 [74.5%]), and there were 22 (16.1%) Black surrogates, 107 (78.1%) White surrogates, and 8 surrogates (5.8%) with other race and ethnicity. Of 100 physicians, most were male (64 [64.0%]), with 11 (11.0%) Asian physicians, 4 (4.0%) Black physicians, and 75 (75.0%) White physicians. Median (IQR) surrogate prognostic misunderstanding declined significantly after family meetings (before: 22.0 [10.0 to 40.0] percentage points; after: 15.0 [5.0 to 34.0] percentage points; P = .002), but there was no significant change in median (IQR) physician prognostic misunderstanding (before: 12.0 [5.0 to 30.0] percentage points; after: 15.0 [5.0 to 29.0] percentage points; P = .99). In adjusted analyses, SDM-aligned communication was not associated with prognostic misunderstanding among surrogates or physicians (surrogates: β = -0.74; 95% CI, -1.81 to 0.32; P = .17; physicians: β = -0.51; 95% CI, -1.63 to 0.62; P = .38). In a prespecified subgroup analysis of 78 surrogates (56.9%) with clinically significant premeeting prognostic misunderstanding, SDM-aligned communication was associated with reduced surrogate postmeeting prognostic misunderstanding (β = -1.71; 95% CI, -3.09 to -0.34; P = .01).Conclusions and relevanceIn this retrospective cohort study, SDM-aligned communication was not associated with changes in prognostic misunderstanding for all surrogates or physicians, but it was associated with reduced prognostic misunderstanding among surrogates with clinically significant misunderstanding at baseline.

Project description:ObjectiveThis study evaluated factors influencing reproductive decision-making in families containing multiple individuals with epilepsy.MethodsOne hundred forty-nine adults with epilepsy and 149 adult biological relatives without epilepsy from families containing multiple affected individuals completed a self-administered questionnaire. Participants answered questions regarding their belief in a genetic cause of epilepsy (genetic attribution) and estimated risk of epilepsy in offspring of an affected person. Participants rated factors for their influence on their reproductive plans, with responses ranging from "much more likely" to "much less likely" to want to have a child. Those with epilepsy were asked, "Do you think you would have wanted more (or any) children if you had not had epilepsy?"ResultsParticipants with epilepsy had fewer offspring than their unaffected relatives (mean = 1.2 vs. 1.9, p = .002), and this difference persisted among persons who had been married. Estimates of risk of epilepsy in offspring of an affected parent were higher among participants with epilepsy than among relatives without epilepsy (mean = 27.2 vs. 19.6, p = .002). Nineteen percent of participants with epilepsy responded that they would have wanted more children if they had not had epilepsy. Twenty-five percent of participants with epilepsy responded that "the chance of having a child with epilepsy" or "having epilepsy in your family" made them less likely to want to have a child. Having these genetic concerns was significantly associated with greater genetic attribution and estimated risk of epilepsy in offspring of an affected parent.SignificancePeople with epilepsy have fewer children than their biological relatives without epilepsy. Beliefs about genetic causes of epilepsy contribute to concerns and decisions to limit childbearing. These beliefs should be addressed in genetic counseling to ensure that true risks to offspring and reproductive options are well understood.

Project description:BackgroundDecision making for adult tracheostomy and prolonged mechanical ventilation is emotionally complex. Expectations of surrogate decision makers and physicians rarely align. Little is known about what surrogates need to make goal-concordant decisions. Currently, little is known about the decisional needs of surrogates and providers, impeding efforts to improve the decision-making process.MethodsUsing a thematic analysis approach, we performed a qualitative study with semistructured interviews with surrogates of adult patients receiving mechanical ventilation (MV) being considered for tracheostomy and physicians routinely caring for patients receiving MV. Recruitment was stopped when thematic saturation was reached. We describe the decision-making process, identify core decisional needs, and map the process and needs for possible elements of a future shared decision-making tool.ResultsForty-three participants (23 surrogates and 20 physicians) completed interviews. Hope, Lack of Knowledge Data, and Uncertainty emerged as the 3 main themes that described the decision-making process and were interconnected with one another and, at times, opposed each other. Core decisional needs included information about patient wishes, past activity/medical history, short- and long-term outcomes, and meaningful recovery. The themes were the lens through which the decisional needs were weighed. Decision making existed as a balance between surrogate emotions and understanding and physician recommendations.ConclusionsTracheostomy and prolonged MV decision making is complex. Hope and Uncertainty were conceptual themes that often battled with one another. Lack of Knowledge & Data plagued both surrogates and physicians. Multiple tangible factors were identified that affected surrogate decision making and physician recommendations.ImplicationsUnderstanding this complex decision-making process has the potential to improve the information provided to surrogates and, potentially, increase the goal-concordant care and alignment of surrogate and physician expectations.HighlightsDecision making for tracheostomy and prolonged mechanical ventilation is a complex interactive process between surrogate decision makers and providers.Qualitative themes of Hope, Uncertainty, and Lack of Knowledge & Data shared by both providers and surrogates were identified and described the decision-making process.Concrete decisional needs of patient wishes, past activity/medical history, short- and long-term outcomes, and meaningful recovery affected each of the larger themes and represented key information from which surrogates and providers based decisions and recommendations.The qualitative themes and decisional needs identified provide a roadmap to design a shared decision-making intervention to improve adult tracheostomy and prolonged mechanical ventilation decision making.

Project description:ObjectiveThe Intensive Care Unit (ICU) is a stressful environment for families of critically ill patients and these individuals are at risk to develop persistent psychological morbidity. Our study objective was to identify individual differences in coping with stress and information presentation preferences of respondents exposed to a simulated ICU experience.MethodsParticipants were recruited from a university and two community populations. Participants completed questionnaires that measured demographic information and characteristics that may be relevant to an individual's ICU experience. Quality of life was measured by the EQ-5D, personality dimensions were examined with the abbreviated Big Five inventory, coping with stress was assessed with Brief COPE. Shared decision making preferences were assessed by the Degner Control Preferences Scale (CPS) and information seeking style was assessed with the Miller Behavioral Style Scale (MBSS). Social support was examined using an abbreviated version of the Social Relationship Index. Participants also completed a vignette-based simulated ICU experience, in which they made a surrogate decision on behalf of a loved one in the ICU.ResultsThree hundred forty-three participants completed the study. Three distinct coping profiles were identified: adaptive copers, maladaptive copers, and disengaged copers. Profiles differed primarily on coping styles, personality, quality of their closest social relationship, and history of anxiety and depression. Responses to the simulated ICU decision making experience differed across profiles. Disengaged copers (15%) were more likely to elect to refuse dialysis on behalf of an adult sibling compared to adaptive copers (7%) or maladaptive copers (5%) (p = 0.03). Notably, the MBSS and the CPS did not differ by coping profile.ConclusionDistinct coping profiles are associated with differences in responses to a simulated ICU experience. Tailoring communication and support to specific coping profiles may represent an important pathway to improving ICU experience for patients and families.

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Dataset Information

Identifying elements of ICU care that families report as important but unsatisfactory: decision-making, control, and ICU atmosphere.

Background

Methods

Results

Conclusions

Trial registry

Publications

Identifying elements of ICU care that families report as important but unsatisfactory: decision-making, control, and ICU atmosphere.

Similar Datasets

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