Learned helplessness among families and surrogate decision-makers of patients admitted to medical, surgical, and trauma ICUs.
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ABSTRACT:
SUBMITTER: Sullivan DR
PROVIDER: S-EPMC3515025 | biostudies-other | 2012 Dec
REPOSITORIES: biostudies-other
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Project description:Difficult conversations in medical care often occur between physicians and patients' surrogates, individuals entrusted with medical decisions for patients who lack the capacity to make them. Poor communication between patients' surrogates and physicians may exacerbate anxiety and guilt for surrogates, and may contribute to physician stress and burnout.This pilot study assesses the effectiveness of an experiential learning workshop that was conducted in a clinical setting, and aimed at improving resident physician communication skills with a focus on surrogate decision-making.From April through June 2016, we assessed internal medicine residents' baseline communication skills through an objective structured clinical examination (OSCE) with actors representing standardized surrogates. After an intensive, 6-hour communication skills workshop, residents were reassessed via an OSCE on the same day. A faculty facilitator and the surrogate evaluated participants' communication skills via the expanded Gap Kalamazoo Consensus Statement Assessment Form. Wilcoxon signed rank tests (? of .05) compared mean pre- and postworkshop scores.Of 44 residents, 33 (75%) participated. Participants' average preworkshop OSCE scores (M?=?3.3, SD?=?0.9) were significantly lower than postworkshop scores (M?=?4.3; SD?=?0.8; Z?=?4.193; P?<?.001; effect size r?=?0.52). After the workshop, the majority of participants self-reported feeling "more confident."Residents' communication skills specific to surrogate decision-making benefit from focused interventions. Our pilot assessment of a workshop showed promise, and additionally demonstrated the feasibility of bringing OSCEs and simulated encounters into a busy clinical practice.
| S-EPMC5559241 | biostudies-other
Project description:In advanced dementia, feeding problems are nearly universal, and families face difficult decisions about feeding options. Initial interviews for a randomized trial were used to describe surrogates' perceptions of feeding options, and to determine whether a decision aid on feeding options in advanced dementia would improve knowledge, reduce expectation of benefit from tube feeding, and reduce conflict over treatment choices for persons with advanced dementia.Semistructured interview with prestudy and poststudy design for surrogates in the intervention group.Twenty-four skilled nursing facilities across North Carolina participating in a cluster randomized trial.Two hundred and fifty-five surrogate decision makers for nursing home residents with advanced dementia and feeding problems, in control (n = 129) and intervention (n = 126) groups.For intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions.The interview included open-ended items asking surrogates to report advantages and disadvantages of tube feeding and assisted oral feeding. Knowledge of feeding options was measured with 19 true/false items and items measuring expectation of benefit from tube feeding. Surrogates reported which of these two feeding options they preferred for the person with dementia, and how confident they were in this choice; their level of conflict about the choice was measured using the decisional conflict scale.Before the decision aid, surrogates described advantages and disadvantages of assisted oral feeding and tube feeding in practical, ethical, and medical terms. After review of the decision aid, intervention surrogates had improved knowledge scores (15.5 vs 16.8; P < .001), decreased expectation of benefits from tube feeding (2.73 vs 2.32; P = .001), and reduced decisional conflict (2.24 vs 1.91; P < .001). Surrogates preferred assisted oral feeding initially and reported more certainty about this choice after the decision aid.A structured decision aid can be used to improve decision making about feeding options in dementia care.
| S-EPMC3563876 | biostudies-literature
Project description:BackgroundIdentification of surrogate decision makers (SDMs) is an important part of advance care planning for hospitalized patients. Despite its importance, the best methods for engaging residents to sustainably improve SDM documentation have not been identified.ObjectiveWe implemented a hospital-wide quality improvement initiative to increase identification and documentation of SDMs in the electronic health record (EHR) for hospitalized patients, utilizing a Housestaff Quality and Safety Council (HQSC).MethodsEHR documentation of SDMs for all adult patients admitted to a tertiary academic hospital, excluding psychiatry, were tracked and grouped by specialty in a weekly run chart during the intervention period (July 2015 through April 2016). This also continued postintervention. Interventions included educational outreach for residents, monthly plan-do-study-act cycles based on performance feedback, and a financial incentive of a one-time payment of 0.75% of a resident's salary put into the retirement account of each resident, contingent on meeting an SDM documentation target. Comparisons were made using statistical process control and chi-square tests.ResultsAt baseline, SDMs were documented for 11.1% of hospitalized adults. The intervention period included 9146 eligible admissions. Hospital-wide SDM documentation increased significantly and peaked near the financial incentive deadline at 48% (196 of 407 admissions, P < 001). Postintervention, hospital-wide SDM documentation declined to 30% (134 of 446 admissions, P < .001), but remained stable.ConclusionsThis resident-led intervention sustainably increased documentation of SDMs, despite a decline from peak rates after the financial incentive period and notable differences in performance patterns by specialty admitting service.
| S-EPMC6570449 | biostudies-literature
Project description:BACKGROUND:Surrogate decision-makers ("surrogates") and physicians of incapacitated patients have different views of prognosis and how it should be communicated, but this has not been investigated in neurocritically ill patients. We examined surrogates' communication preferences and physicians' practices during the outcome prognostication for critically ill traumatic brain injury (ciTBI) patients in two level-1 trauma centers and seven academic medical centers in the USA. METHODS:We used qualitative content analysis and descriptive statistics of transcribed interviews to identify themes in surrogates (n = 16) and physicians (n = 20). RESULTS:The majority of surrogates (82%) preferred numeric estimates describing the patient's prognosis, as they felt it would increase prognostic certainty, and limit the uncertainty perceived as frustrating. Conversely, 75% of the physicians reported intentionally omitting numeric estimates during prognostication meetings due to low confidence in family members' abilities to appropriately interpret probabilities, worry about creating false hope, and distrust in the accuracy and data quality of existing TBI outcome models. Physicians felt that these models are for research only and should not be applied to individual patients. Surrogates valued compassion during prognostication discussions, and acceptance of their goals-of-care decision by clinicians. Physicians and surrogates agreed on avoiding false hope. CONCLUSION:We identified fundamental differences in the communication preferences of prognostic information between ciTBI patient surrogates and physicians. These findings inform the content of a future decision aid for goals-of-care discussions in ciTBI patients. If validated, these findings may have important implications for improving communication practices in the neurointensive care unit independent of whether a formal decision aid is used.
| S-EPMC5693603 | biostudies-literature
Project description:BackgroundDialysis is often initiated in the hospital during episodes of acute kidney injury and critical illness. Little is known about how patients or their surrogate decision makers feel about dialysis initiation in the inpatient setting.MethodsWe conducted a prospective cohort study at a large academic center in the United States. All patients who initiated dialysis during a 30-day period in 2016 were approached for enrollment. Study participants were defined as individuals who provided consent for dialysis initiation - either the patient or a surrogate decision-maker. Decisional satisfaction and the degree of shared decision-making were assessed using the decisional attitude scale and the control preferences scale, respectively. These scales were incorporated into a study questionnaire along with an exploratory structured interview.ResultsA total of 31 potential participants were eligible and 21 agreed to participate in the study. Continuous renal replacement therapy was used in 14 out of 21 cases (67%) and there was 33% in-hospital mortality in the study cohort. A majority (62%) of patients were unable to participate in the consent process for dialysis initiation and had to rely on a surrogate decision-maker. The mean score for the decisional attitude scale was 4.1 (95% CI 3.8-4.3) with a score of 5 corresponding to high decisional satisfaction. Most of the decisions were classified as shared and incorporated input from clinicians as well as patients or surrogates. Although 90% of participants agreed that they had a choice in making the decision, 81% were unable to mention any alternatives to dialysis initiation.ConclusionsDialysis initiation was associated with high decisional satisfaction and most participants felt that the decision incorporated input from patients and providers. However, inpatient dialysis initiation was commonly associated with loss of decisional capacity and reliance on a surrogate decision-maker. This finding is likely driven by critical illness. Survivors of critical illness who remain dialysis dependent may need to revisit conversations about the rationale, risks, and benefits of dialysis.
| S-EPMC6083629 | biostudies-literature
Project description:ObjectiveTo determine whether groups of surrogates for patients with severe acute brain injury (SABI) with poor prognosis can be identified based on their prioritization of goals-of-care (GOC) decisional concerns, an online survey of 1,588 adults recruited via a probability-based panel representative of the US population was conducted.MethodsParticipants acted as a surrogate for a GOC decision for a hypothetical patient with SABI and were randomized to 1 of 2 prognostic scenarios: the patient likely being left with a range of severe functional disability (SD) or remaining in a vegetative state (VS). Participants prioritized a list of 12 decisional concerns via best-worst scaling. Latent class analysis (LCA) was used to discover decisional groups.ResultsThe completion rate was 44.6%; data weighting was conducted to mitigate nonresponse bias. For 792 SD respondents, LCA revealed 4 groups. All groups shared concerns regarding respecting patient wishes and minimizing suffering. The 4 groups were otherwise distinguished by unique concerns that their members highlighted: an older adult remaining severely disabled (34.4%), family consensus (26.4%), doubt regarding prognostic accuracy (20.7%), and cost of long-term care (18.6%). For the 796 VS respondents, LCA revealed 5 groups. Four of the 5 groups had similar concern profiles to the 4 SD groups. The largest (29.0%) expressed the most prognostic doubt. An additional group (15.8%) prioritized religious concerns.ConclusionsAlthough surrogate decision makers for patients with SABI are concerned with respecting patient wishes and minimizing suffering, certain groups highly prioritize other specific decisional factors. These data can help inform future interventions for supporting decision makers.
| S-EPMC7282883 | biostudies-literature
Project description:OBJECTIVES:Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time. DESIGN:Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial. SETTINGS:Medical ICUs at four U.S. hospitals. PARTICIPANTS:Family members of patients with chronic critical illness (adults mechanically ventilated for ? 7 d and expected to remain ventilated and survive for ? 72?hr) who participated in the active arm of a communication intervention study. INTERVENTIONS:Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner. MEASUREMENTS AND MAIN RESULTS:Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens. CONCLUSIONS:Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care.
| S-EPMC6197811 | biostudies-literature
Project description:To describe communication experiences of surrogates who had recently made a major medical decision for a hospitalized older adult.Semistructured interviews about a recent hospitalization.Two hospitals affiliated with one large medical school: an urban public hospital and a university-affiliated tertiary referral hospital.Surrogates were eligible if they had recently made a major medical decision for a hospitalized individual aged 65 and older and were available for an interview within 1 month (2-5 months if the patient died).Interviews were audio-recorded, transcribed, and analyzed using methods of grounded theory.Thirty-five surrogates were interviewed (80% female, 44% white, 56% African American). Three primary themes emerged. First, it was found that the nature of surrogate-clinician relationships was best characterized as a relationship with a "team" of clinicians rather than individual clinicians because of frequent staff changes and multiple clinicians. Second, surrogates reported their communication needs, including frequent communication, information, and emotional support. Surrogates valued communication from any member of the clinical team, including nurses, social workers, and physicians. Third, surrogates described trust and mistrust, which were formed largely through surrogates' communication experiences.In the hospital, surrogates form relationships with a "team" of clinicians rather than with individuals, yet effective communication and expressions of emotional support frequently occur, which surrogates value highly. Future interventions should focus on meeting surrogates' needs for frequent communication and high levels of information and emotional support.
| S-EPMC3683825 | biostudies-literature
Project description:BackgroundOver one third of stroke patients have cognitive or language deficits such that they require surrogate consent for acute stroke treatment or enrollment into acute stroke trials. Little is known about the agreement of stroke patients and surrogates in this time-sensitive decision-making process. We sought to determine patient and surrogate agreement in 4 hypothetical acute stroke scenarios.MethodsWe performed face to face interviews with ED patients at an academic teaching hospital from June to August 2011. Patients and the surrogates they designated were asked to make decisions regarding 4 hypothetical stroke scenarios: 2 were treatment decisions; 2 involved enrollment into a clinical trial. Percent agreement was calculated as measures of surrogate predictive ability.ResultsA total of 200 patient/surrogate pairs were interviewed. Overall patient/surrogate percent agreement was 76.5%. Agreement for clinical scenarios ranged from 87% to 96% but dropped to 49%-74% for research scenarios.ConclusionsSurrogates accurately predict patient preferences for standard acute stroke treatments. However, the accuracy decreases when predicting research participation suggesting that the degree of surrogate agreement is dependent on the type of decision being made. Further research is needed to more thoroughly characterize surrogate decision-making in acute stroke situations.
| S-EPMC4225766 | biostudies-literature
Project description:Background:Treatment decisions commonly have to be made in intensive care units (ICUs). These decisions are difficult for surrogate decision makers and often lead to decisional conflict, psychological distress, and treatments misaligned with patient preferences. Objective:To determine whether a decision aid about prolonged mechanical ventilation improved prognostic concordance between surrogate decision makers and clinicians compared with a usual care control. Design:Multicenter, parallel, randomized, clinical trial. (ClinicalTrials.gov: NCT01751061). Setting:13 medical and surgical ICUs at 5 hospitals. Participants:Adult patients receiving prolonged mechanical ventilation and their surrogates, ICU physicians, and ICU nurses. Intervention:A Web-based decision aid provided personalized prognostic estimates, explained treatment options, and interactively clarified patient values to inform a family meeting. The control group received information according to usual care practices followed by a family meeting. Measurements:The primary outcome was improved concordance on 1-year survival estimates, measured with the clinician-surrogate concordance scale (range, 0 to 100 percentage points; higher scores indicate more discordance). Secondary and additional outcomes assessed the experiences of surrogates (psychological distress, decisional conflict, and quality of communication) and patients (length of stay and 6-month mortality). Outcomes assessors were blinded to group allocation. Results:The study enrolled 277 patients, 416 surrogates, and 427 clinicians. Concordance improvement did not differ between intervention and control groups (mean difference in score change from baseline, -1.7 percentage points [95% CI, -8.3 to 4.8 percentage points]; P = 0.60). Surrogates' postintervention estimates of patients' 1-year prognoses did not differ between intervention and control groups (median, 86.0% [interquartile range {IQR}, 50.0%] vs. 92.5% [IQR, 47.0%]; P = 0.23) and were substantially more optimistic than results of a validated prediction model (median, 56.0% [IQR, 43.0%]) and physician estimates (median, 50.0% [IQR, 55.5%]). Eighty-two intervention surrogates (43%) favored a treatment option that was more aggressive than their report of patient preferences. Although intervention surrogates had greater reduction in decisional conflict than control surrogates (mean difference in change from baseline, 0.4 points [CI, 0.0 to 0.7 points]; P = 0.041), other surrogate and patient outcomes did not differ. Limitation:Contamination among clinicians could have biased results toward the null hypothesis. Conclusion:A decision aid about prolonged mechanical ventilation did not improve prognostic concordance between clinicians and surrogates, reduce psychological distress among surrogates, or alter clinical outcomes. Decision support in acute care settings may require greater individualized attention for both the cognitive and affective challenges of decision making. Primary Funding Source:National Institutes of Health.
| S-EPMC7363113 | biostudies-literature