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Communicating with clinicians: the experiences of surrogate decision-makers for hospitalized older adults.

ABSTRACT: 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.

SUBMITTER: Torke AM

PROVIDER: S-EPMC3683825 | biostudies-literature | 2012 Aug

REPOSITORIES: biostudies-literature

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Communicating with clinicians: the experiences of surrogate decision-makers for hospitalized older adults.

Torke Alexia M AM Petronio Sandra S Purnell Christianna E CE Sachs Greg A GA Helft Paul R PR Callahan Christopher M CM

Journal of the American Geriatrics Society 20120806 8

<h4>Objectives</h4>To describe communication experiences of surrogates who had recently made a major medical decision for a hospitalized older adult.<h4>Design</h4>Semistructured interviews about a recent hospitalization.<h4>Setting</h4>Two hospitals affiliated with one large medical school: an urban public hospital and a university-affiliated tertiary referral hospital.<h4>Participants</h4>Surrogates were eligible if they had recently made a major medical decision for a hospitalized individual ...[more]

PMID: 22881864

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Project description:IMPORTANCE:Hospitalized older adults often lack decisional capacity, but outside of the intensive care unit and end-of-life care settings, little is known about the frequency of decision making by family members or other surrogates or its implications for hospital care. OBJECTIVE:To describe the scope of surrogate decision making, the hospital course, and outcomes for older adults. DESIGN, SETTING, AND PARTICIPANTS:Prospective, observational study conducted in medicine and medical intensive care unit services of 2 hospitals in 1 Midwestern city in 1083 hospitalized older adults identified by their physicians as requiring major medical decisions. MAIN OUTCOMES AND MEASURES:Clinical characteristics, hospital outcomes, nature of major medical decisions, and surrogate involvement. RESULTS:According to physician reports, at 48 hours of hospitalization, 47.4% (95% CI, 44.4%-50.4%) of older adults required at least some surrogate involvement, including 23.0% (20.6%-25.6%) with all decisions made by a surrogate. Among patients who required a surrogate for at least 1 decision within 48 hours, 57.2% required decisions about life-sustaining care (mostly addressing code status), 48.6% about procedures and operations, and 46.9% about discharge planning. Patients who needed a surrogate experienced a more complex hospital course with greater use of ventilators (2.5% of patients who made decisions and 13.2% of patients who required any surrogate decisions; P <?.001), artificial nutrition (1.7% of patients and 14.4% of surrogates; P <?.001), and length of stay (median, 6 days for patients and 7 days for surrogates; P <?.001). They were more likely to be discharged to an extended-care facility (21.2% with patient decisions and 40.9% with surrogate decisions; P <?.001) and had higher hospital mortality (0.0% patients and 5.9% surrogates; P <?.001). Most surrogates were daughters (58.9%), sons (25.0%), or spouses (20.6%). Overall, only 7.4% had a living will and 25.0% had a health care representative document in the medical record. CONCLUSIONS AND RELEVANCE:Surrogate decision making occurs for nearly half of hospitalized older adults and includes both complete decision making by the surrogate and joint decision making by the patient and surrogate. Surrogates commonly face a broad range of decisions in the intensive care unit and the hospital ward setting. Hospital functions should be redesigned to account for the large and growing role of surrogates, supporting them as they make health care decisions.

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.

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.

Project description:BackgroundSurrogate decision makers of stroke patients are often unprepared to make critical decisions on life-sustaining treatments. We describe the development process and key features for the Understanding Stroke web-based decision support tool.MethodsWe used multiple strategies to develop a patient-centered, tailored decision aid. We began by forming a Patient and Family Advisory Council to provide continuous input to our multidisciplinary team on the development of the tool. Additionally, focus groups consisting of nurses, therapists, social workers, physicians, stroke survivors, and family members reviewed key elements of the tool, including prognostic information, graphical displays, and values clarification exercise. To design the values clarification exercise, we asked focus groups to provide feedback on a list of important activities of daily living. An ordinal prognostic model was developed for ischemic stroke and intracerebral hemorrhage using data taken from the Virtual International Stroke Trials Archive Plus, and incorporated into the tool.ResultsFocus group participants recommended making numeric prognostic information optional due to possible emotional distress. Pie charts were generally favored by participants for graphical presentation of prognostic information, though a horizontal stacked bar chart was also added due to its prevalence in stroke literature. Plain language descriptions of the modified Rankin Scale were created to accompany the prognostic information. A values clarification exercise was developed consisting of a list of 13 situations that may make an individual consider comfort measures only. The final version of the web based tool (which can be viewed on tablets) included the following sections: general introduction to stroke, outcomes (prognostic information and recovery), in-hospital and life-sustaining treatments, decision making and values clarification, post-hospital care, tips for talking to the health care team, and a summary report. Preliminary usability testing received generally favorable feedback.ConclusionWe developed Understanding Stroke, a tailored decision support tool for surrogate decision makers of stroke patients. The tool was well received and will be formally pilot tested in a group of stroke surrogate decision makers.Trial registrationClinicalTrials.gov ( NCT03427645 ).

Dataset Information

Communicating with clinicians: the experiences of surrogate decision-makers for hospitalized older adults.

Publications

Communicating with clinicians: the experiences of surrogate decision-makers for hospitalized older adults.

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