Project description:BackgroundTwo out of three family members experience symptoms of posttraumatic stress, depression, or anxiety lasting for months after the ICU stay. Interventions aimed at mitigating these symptoms have been unsuccessful.Research questionTo understand the emotional experiences of family members of critically ill patients and to identify coping strategies used by family members during the ICU stay.Study designand Methods: As part of a mixed methods study to understand sources of distress among ICU family members, semistructured interviews were conducted with ICU family members. Family members completed surveys at the time of interview and at 90 days to assess for symptoms of depression, anxiety, and posttraumatic stress.ResultsSemistructured interviews and baseline surveys were conducted with 40 ICU family members; 78% of participants (n = 31) completed follow-up surveys at 90 days. At the time of interview, 65% of family members had symptoms of depression, anxiety, or posttraumatic stress. At 90 days, 48% of surveyed family members had symptoms of psychological distress. Three primary emotions were identified among ICU family members: sadness, anger, and fear. A diverse array of coping strategies was used by family members, including problem-solving, information seeking, avoidance/escape, self-reliance, support seeking, and accommodation.InterpretationThis study emphasizes similarities in emotions but diversity in coping strategies used by family members in the ICU. Understanding the relationship between ICU experiences, emotional responses, and long-term psychological outcomes may guide targeted interventions to improve mental health outcomes of ICU family members.
Project description:To identify the relationships between advance directive status, demographic characteristics and decisional burden (role stress and depressive symptoms) of surrogate decision-makers (SDMs) of patients with chronic critical illness.Although the prevalence of advance directives among Americans has increased, SDMs are ultimately responsible for complex medical decisions of the chronically critically ill patient. Decisional burden has lasting psychological effects on SDMs. There is insufficient evidence on the influence of advance directives on the decisional burden of surrogate decision-makers of patients with chronic critical illness.The study was a secondary data analysis of cross-sectional data. Data were obtained from 489 surrogate decision-makers of chronically critically ill patients at two academic medical centres in Northeast Ohio, United States, between September 2005-May 2008.Data were collected using demographic forms and questionnaires. A single-item measure of role stress and the Center for Epidemiological Studies Depression (CESD) scale were used to capture the SDM's decisional burden. Descriptive statistics, t-tests, chi-square and path analyses were performed.Surrogate decision-makers who were nonwhite, with low socioeconomic status and low education level were less likely to have advance directive documentation for their chronically critically ill patient. The presence of an advance directive mitigates the decisional burden by directly reducing the SDM's role stress and indirectly lessening the severity of depressive symptoms.Most SDMs of chronically critically ill patients will not have the benefit of knowing the patient's preferences for life-sustaining therapies and consequently be at risk of increased decisional burden.Study results are clinically useful for patient education on the influence of advance directives. Patients may be informed that SDMs without advance directives are at risk of increased decisional burden and will require decisional support to facilitate patient-centred decision-making.
Project description:BackgroundSleepiness and fatigue are commonly reported by family members of intensive care unit (ICU) patients. Sleep deprivation may result in cognitive deficits. Sleep deprivation and cognitive blunting have not been quantitatively assessed in this population. We sought to determine the proportion of family members of ICU patients that experience excessive daytime sleepiness, sleep-associated functional impairment, and cognitive blunting.MethodsMulticenter, cross-sectional survey of family members of patients admitted to ICUs at the University of Maryland Medical Center, Johns Hopkins University Hospital, and Christiana Hospital. Family members of ICU patients were evaluated using the Epworth Sleepiness Scale, a validated survey assessing sleepiness in everyday situations (normal, less than 10); the Functional Outcomes of Sleep Questionnaire-10 (FOSQ-10), a questionnaire quantifying the impact of sleepiness on daily activities (normal, at least 17.9); and psychomotor vigilance testing, a test of cognitive function, in relation to sleep deprivation (normal mean reaction time less than 500 ms).ResultsA total of 225 family members were assessed. Of these, 50.2 % (113/225) had Epworth scores consistent with excessive daytime sleepiness. Those with sleepiness experienced greater impairment in performing daily activities by FOSQ-10 (15.6 ± 3.0 vs 17.4 ± 2.2, p < 0.001). Cognitive blunting was found in 13.3 % (30/225) of family members and 15.1 % (14/93) of surrogate decision-makers. Similar rates of cognitive blunting as reported by mean reaction time of at least 500 ms were found among family members whether or not they reported sleepiness (15.0 % (17/113) vs. 11.6 % (13/112), p = 0.45).ConclusionsHalf of the family members of ICU patients suffer from excessive daytime sleepiness. This sleepiness is associated with functional impairment, but not cognitive blunting.
Project description:BackgroundSurrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.ObjectiveTo evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making.DesignCross-sectional survey.ParticipantsTwenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total).Main measuresPatients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios.Key resultsPatient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient's preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient-family agreement (AOR 5.28, 1.07-26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02-14.54).ConclusionFamily members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.
Project description:OBJECTIVE: This study assessed the relative importance of clinical and transport-related factors in physicians' decision-making regarding the interhospital transport of critically ill patients. METHODS: The medical heads of all 95 ICUs in The Netherlands were surveyed with a questionnaire using 16 case vignettes to evaluate preferences for transportability; 78 physicians (82%) participated. The vignettes varied in eight factors with regard to severity of illness and transport conditions. Their relative weights were calculated for each level of the factors by conjoint analysis and expressed in beta. The reference value (beta = 0) was defined as the optimal conditions for critical care transport; a negative beta indicated preference against transportability. RESULTS: The type of escorting personnel (paramedic only: beta = -3.1) and transport facilities (standard ambulance beta = -1.21) had the greatest negative effect on preference for transportability. Determinants reflecting severity of illness were of relative minor importance (dose of noradrenaline beta = -0.6, arterial oxygenation beta = -0.8, level of peep beta = -0.6). Age, cardiac arrhythmia, and the indication for transport had no significant effect. CONCLUSIONS: Escorting personnel and transport facilities in interhospital transport were considered as most important by intensive care physicians in determining transportability. When these factors are optimal, even severely critically ill patients are considered able to undergo transport. Further clinical research should tailor transport conditions to optimize the use of expensive resources in those inevitable road trips.
Project description:In cognitive science there is a seeming paradox: On the one hand, studies of human judgment and decision making have repeatedly shown that people systematically violate optimal behavior when integrating information from multiple sources. On the other hand, optimal models, often Bayesian, have been successful at accounting for information integration in fields such as categorization, memory, and perception. This apparent conflict could be due, in part, to different materials and designs that lead to differences in the nature of processing. Stimuli that require controlled integration of information, such as the quantitative or linguistic information (commonly found in judgment studies), may lead to suboptimal performance. In contrast, perceptual stimuli may lend themselves to automatic processing, resulting in integration that is closer to optimal. We tested this hypothesis with an experiment in which participants categorized faces based on resemblance to a family patriarch. The amount of evidence contained in the top and bottom halves of each test face was independently manipulated. These data allow us to investigate a canonical example of sub-optimal information integration from the judgment and decision making literature, the dilution effect. Splitting the top and bottom halves of a face, a manipulation meant to encourage controlled integration of information, produced farther from optimal behavior and larger dilution effects. The Multi-component Information Accumulation model, a hybrid optimal/averaging model of information integration, successfully accounts for key accuracy, response time, and dilution effects.
Project description:When critically ill neurologic patients are cognitively incapacitated, decisions about treatment options are delegated to surrogates, usually family members. We conducted qualitative interviews with 20 Dutch neurologists and residents in neurology varying in age, work experience, and workplace to investigate how they involve their patients' family members in decision-making. Their reports revealed that they ascribed 3 different, yet tightly interwoven roles to families: (1) informants about values and preferences of patients, (2) participants in care and care planning, and (3) sufferers themselves. Neurologists regarded decision-making as an integral part of end-of-life care rather than an isolated process, changing the meaning of what decision-making entails. All different roles of family members were important in end-of-life care and decision-making, instead of the single one of legal surrogate. Neurologists need to support family members in these various roles.
Project description:ImportancePhysicians often rely on surrogate decision-makers (SDMs) to make important decisions on behalf of critically ill patients during times of incapacity. It is uncertain whether targeted interventions to improve surrogate decision-making in the intensive care unit (ICU) reduce nonbeneficial treatment and improve SDM comprehension, satisfaction, and psychological morbidity.ObjectiveTo perform a systematic review and meta-analysis of randomized clinical trials (RCTs) to determine the association of such interventions with patient- and family-centered outcomes and resource use.Data sourcesA search was conducted of MEDLINE, Embase, and other relevant databases for potentially relevant studies from inception through May 30, 2018.Study selectionRandomized clinical trials studying interventions that were targeted at SDMs or family members of critically ill adults in the ICU were included. Key search terms included surrogate or substitute decision-maker, critically ill, randomized controlled trials, and their respective related terms.Data extraction and synthesisThis study followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. Two independent, blinded reviewers independently screened citations and extracted data. Random effects models with inverse variance weighting were used to pool outcomes data when possible and otherwise present findings qualitatively.Main outcomes and measuresOutcomes of interest were divided into 3 categories: (1) patient-related clinical outcomes (mortality, length of stay [LOS], duration of life-sustaining therapies), (2) SDM and family-related outcomes (comprehension, major change in goals of care, incident psychological comorbidities [posttraumatic stress disorder, anxiety, depression], and satisfaction with care), and (3) use of resources (cost of care and health care resource use).ResultsOf 3735 studies screened, 13 RCTs were included, comprising a total of 10 453 patients. Interventions were categorized as health care professional led (n = 6), ethics consultation (n = 3), palliative care consultation (n = 2), and media (n = 1 pamphlet and 1 video). No association with mortality was observed (risk ratio, 1.03; 95% CI, 0.98-1.08; P = .22). Intensive care unit LOS was significantly shorter among patients who died (mean difference, -2.11 days; 95% CI, -4.16 to -0.07; P = .04), but not in the overall population (mean difference, -0.79 days; 95% CI, -2.33 to 0.76 days; P = .32). There was no consistent difference in SDM-related outcomes, including satisfaction with care or perceived quality of care (n = 6 studies) and incident psychological comorbidities (depression: ratio of means, -0.11; 95% CI, -0.29 to 0.08; P = .26; anxiety: ratio of means, -0.08; 95% CI, -0.25 to 0.08; P = .31; or posttraumatic stress disorder: ratio of means: -0.04; 95% CI, -0.21 to 0.13; P = .65). Among 6 trials reporting effects on health care resource use, only 1 nurse-led intervention observed a significant reduction in costs ($75 850 control vs $51 060 intervention; P = .04).Conclusions and relevanceSystematic interventions aimed at improving surrogate decision-making for critically ill adults may reduce ICU LOS among patients who die in the ICU, without influencing overall mortality. Better understanding of the complex processes related to surrogate decision-making is needed.
Project description:BackgroundEvery medical decision is based on balancing medical knowledge, ethical considerations, and patient preferences. Previous surveys have mainly covered the ethical knowledge of medical staff. The aim of this study is to evaluate the feasibility of an innovative concept regarding how ethical criteria are applied to clinical decision-making during critical illness.MethodsAn online survey including a short case vignette was carried out at a university hospital among physicians specialising in intensive care medicine in Germany. After free text responses regarding further required case information, the participants were asked to rank decision criteria during the course of the case vignette. A qualitative evaluation was performed by two independent investigators, based on a transcription into categories. This was followed by a quantitative analysis of ranked criteria.ResultsOur analysis has shown that doctors are initially inclined to consider medical information when making treatment decisions. When complications occur, ethical values are more often included in the decision-making. The qualitative evaluation reveiled that the patient's will was consistently regarded as the leading criterion for decision-making. In the quantitative evaluation, patient's well-being, quality of life, and patient autonomy were rated as the most important decision criteria. Economic factors were ranked least important.ConclusionA mixed methods approach is able to reflect the complexity of ethical reasoning within the medical decision-making process, suggesting the feasibility of this concept.Clinical trial registrationThe study was registered under DRKS-ID: DKRS00011905 (April 2017).
Project description:ObjectiveBecause the heterogeneity of patients in intensive care units (ICUs) and family members represents a challenge to palliative care delivery, we aimed to determine if distinct phenotypes of palliative care needs exist.MethodsProspective cohort study conducted among family members of adult patients undergoing mechanical ventilation in six medical and surgical ICUs. The primary outcome was palliative care need measured by the Needs at the End-of-Life Screening Tool (NEST, range from 0 (no need) to 130 (highest need)) completed 3 days after ICU admission. We also assessed quality of communication, clinician-family relationship and patient centredness of care. Latent class analysis of the NEST's 13 items was used to identify groups with similar patterns of serious palliative care needs.ResultsAmong 257 family members, latent class analysis yielded a four-class model including complex communication needs (n=26, 10%; median NEST score 68.0), family spiritual and cultural needs (n=21, 8%; 40.0) and patient and family stress needs (n=43, 31%; 31.0), as well as a fourth group with fewer serious needs (n=167, 65%; 14.0). Interclass differences existed in quality of communication (median range 4.0-10.0, p<0.001), favourable clinician-family relationship (range 34.6%-98.2%, p<0.001) and both the patient centredness of care Eliciting Concerns (median range 4.0-5.0, p<0.001) and Decision-Making (median range 2.3-4.5, p<0.001) scales.ConclusionsFour novel phenotypes of palliative care need were identified among ICU family members with distinct differences in the severity of needs and perceived quality of the clinician-family interaction. Knowledge of need class may help to inform the development of more person-centred models of ICU-based palliative care.