Surrogate Decision Makers For Patients Research Articles

Posttraumatic Stress Disorder Symptom Clusters in Surrogate Decision Makers of Patients Experiencing Chronic Critical Illness.

OBJECTIVES:Symptoms of posttraumatic stress disorder (PTSD) are common among surrogate decision makers of patients with chronic critical illness (CCI). PTSD symptoms can be categorized into clusters including intrusion, avoidance, and hyperarousal, each of which has been associated with distinct outcomes and treatment responses. Our objective was to determine which symptom cluster was predominant among surrogates of patients with CCI.DESIGN:Secondary analysis of data from a clinical trial of a communication intervention.SETTING:The original trial was conducted in medical intensive care units at three tertiary-care centers and one community hospital.PATIENTS:Patients with CCI (≥7 d of mechanical ventilation and not expected to die or to be weaned from the ventilator in the subsequent 72 hr) and their surrogates.INTERVENTIONS:None.MEASUREMENTS AND MAIN RESULTS:Surrogate PTSD symptoms were measured 90 days after onset of patient CCI using the Impact of Events Scale-Revised (IES-R). The IES-R includes a total score (range, 0–88, higher scores indicate severe symptoms) as well as three subscales that assess intrusion, avoidance, and hyperarousal (range of intrusion and avoidance scores 0–32 and range of hyperarousal score 0–24). Intrusion symptoms were most severe (mean score, 10.3; 95% CI, 9.3–11.2), followed by avoidance (mean score, 8.0; 95% CI, 7.2–8.8). Hyperarousal symptoms were lowest (mean score, 5.1; 95% CI, 4.5–5.7). In a multivariable linear regression model, we found that surrogates of patients who died had higher odds of intrusion (β, 5.52; p < 0.0001) and avoidance (β, 3.29; p = 0.001) symptoms than surrogates of patients who lived, even after adjusting for baseline symptoms of anxiety and depression. Patient death was not associated with hyperarousal symptoms.CONCLUSIONS:Intrusive thoughts are the most severe PTSD symptom in surrogates of patients experiencing CCI, with intensified symptoms among surrogates of patients who died. These results have the potential to inform tailored treatment strategies to reduce PTSD symptoms in this population.

Integrating the Choosing Wisely 5 Questions into Family Meetings in the Intensive Care Unit: A Randomized Controlled Trial Investigating the Effect on Family Perceived Involvement in Decision-Making.

Family members often act as surrogate decision makers for patients in the intensive care unit (ICU). The use of printed prompts may assist with families feeling empowered to fulfill this role. Prospective, randomized controlled trial in 3 ICUs in Western Australia. In the intervention arm, families received the Choosing Wisely 5 questions as printed prompts prior to a family meeting, and the control arm did not receive prompts. The primary outcome was family perceived involvement in decision-making. Outcomes were measured using a survey. Sixty families participated in the study. The majority of families (87.1% control, 79.3% intervention; P = .334) reported feeling “very included” in decision-making. There was no difference in secondary outcomes, including minimal uptake of the questions by the intervention arm. This has been the first randomized trial evaluating the use of a decision-making tool for families in the ICU. Despite ceiling effects in outcome measures, these results suggest room for future study of the Choosing Wisely 5 questions in the ICU.

Experience of African American Surrogate Decision Makers of Patients With Dementia.

Dementia cases are expected to grow for African Americans and surrogate decision makers (SDMs) will have a significant role at the end of life (EOL). This qualitative exploratory case study used Cognitive Task Analysis and an integrated conceptual framework to understand the EOL decision experience of African American SDMs for patients with advanced dementia. Using a holistic multiple-case design, 8 African American SDMs were interviewed about their experiences with the decision-making process, including role acceptance, role enactment, and emotional outcomes of decision making. Thirteen themes germane to understanding the EOL decision experience of African American SDMs were identified. Findings suggest African American SDMs often lack sufficient knowledge of disease prognosis and intervention options to make informed treatment choices at EOL. In particular, African Americans extend the caregiver role to SDM for patients with dementia at EOL without being fully aware of the role and decision-making responsibilities. Surrogates lacked a general understanding of EOL options resulting in underutilization of hospice and palliative care and subsequent regret, and few interventions exist to improve the uptake of EOL care services. There is a need to develop culturally appropriate role preparation, education, and decision support to improve EOL treatment decisions and emotional adjustment of surrogates of patients with advanced dementia, which should be rendered early and throughout the illness trajectory.

The Association between Patient Health Status and Surrogate Decision Maker Post-Traumatic Stress Disorder Symptoms in Chronic Critical Illness.

Rationale: Surrogate decision-makers of patients with chronic critical illness (CCI) are at high risk for symptoms of post-traumatic stress disorder (PTSD). Whether patient health status after hospital discharge is a risk factor for surrogate PTSD symptoms is not known. Objectives: To determine the association between patient health status 90 days after the onset of CCI and surrogate symptoms of PTSD. Methods: We performed a secondary analysis of the data from a multicenter randomized trial of a communication intervention for adult patients with CCI and their surrogate decision-makers. Results: Surrogate PTSD symptoms were measured at 90 days using the Impact of Events Scale-Revised. For patients who were alive at 90 days, location was used as a marker of health status and included the following categories: 1) home (relatively good health and low acuity), 2) acute rehabilitation (moderate care needs and impairments, generally expected to improve), 3) skilled nursing facility (moderate care needs and impairments, generally not expected to improve significantly or quickly), 4) long-term acute care facility (persistently high acute care needs and functional impairment), and 5) readmission to an acute care hospital (suggesting the highest acuity of illness and care needs of the cohort). Patients who died before 90 days were categorized as deceased. In the analyses, 365 surrogates and 256 patients were included. Among patients, 49% were female, and the mean age was 59 years. Among surrogates, 71% were female, and the mean age was 51 years. A directed acyclic graph was constructed to identify covariates to be included in the model. Compared with symptoms seen among surrogates of patients living at home, heightened PTSD symptoms were seen among surrogates of patients who were readmitted to an acute care hospital (β coefficient, 15.9; 95% confidence interval [CI], 4.5 to 27.3) or had died (β coefficient, 14.8; 95% CI, 8.8 to 20.9) at 90 days. Conclusions: Surrogates of patients with CCI who have died or have been readmitted to an acute care hospital at 90 days experience increased PTSD symptoms as compared with surrogates of patients who are living at home. These patients and surrogates represent a readily identifiable group who may benefit from enhanced emotional support.

Ethics consultations in neuro-oncology.

Management of patients with brain tumors can lead to ethical and decisional dilemmas. The aim of this study was to characterize ethical conflicts encountered in neuro-oncologic patients. Retrospective review of ethics consultations performed upon patients with primary and metastatic brain tumors at a tertiary cancer center. An ethics consultation database was examined to characterize ethical conflicts, contextual factors, and interventions by the consultation team. Fifty consultations were reviewed; 28 (56%) patients were women, median age 54 (range 4-86); 27 (54%) patients had a primary central nervous system malignancy; 20 (40%) had brain metastasis. At the time of consultations, 41 (82%) patients lacked decisional capacity; 48 (96%) had a designated surrogate decision maker; 3 (6%) had an advance directive outlining wishes regarding medical treatment; 12 (24%) had a Do Not Attempt Resuscitation (DNAR) order. Ethical conflicts centered upon management of end-of-life (EOL) circumstances in 37 (72%) of cases; of these, 30 did not have decisional capacity. The most common ethical issues were DNAR status, surrogate decision making, and request for nonbeneficial treatment. Consultants resolved conflicts by facilitating decision making for incapacitated patients in 30 (60%) cases, communication between conflicting parties in 10 (20%), and re-articulation of patients' previously stated wishes in 6 (12%). Decisional capacity at EOL represents the primary ethical challenge in care of neuro-oncologic patients. Incomplete awareness among surrogate decision makers of patients' prognosis and preferences contributes to communication gaps and dilemmas. Early facilitation of communication between patients, caregivers, and medical providers may prevent or mitigate conflicts and allow the enactment of patients' goals and values.

A Qualitative Analysis of Factors Influencing Critical Care Trial Enrollment Among Surrogates.

We sought to identify factors that influence surrogate decision makers' decisions to enroll patients into a critical care randomized controlled trial. We conducted a qualitative study embedded within a randomized controlled trial testing the effect of a behavioral nudge intervention for surrogate decision makers on enrollment rate in a sham ventilatory weaning trial among patients with acute respiratory failure. Participants were adult surrogate decision makers of patients receiving mechanical ventilation for acute respiratory failure. The study was conducted in 10 ICUs across 2 urban hospitals within an academic medical center in Philadelphia, Pennsylvanaia, United States. Immediately following their trial enrollment decision, surrogate decision makers were asked to enter free-text responses about the factors that influenced their decision. Responses were analyzed using content analysis. Of the 90 (49%) participants who provided free-text responses, the mean age was 54.9 years (SD 14.3), 69 (79%) were Caucasian, and 48 (53%) were the spouse of the eligible patient. We identified 5 themes influencing enrollment decisions: (i) trial characteristics, (ii) patient clinical condition, (iii) decision making processes, (iv) altruism, and (v) enrollment attempt. Among surrogates who enrolled the patient in the trial (n = 40), the most commonly cited factors were helping future patients (n = 24, 60%) and following the patient's wishes (n = 11, 28%). In contrast, those who declined enrollment (n = 50) most commonly reported that the patient was too sick (n = 27, 54%) and that they feared complicating the patient's condition (n = 11, 22%). Surrogates who enroll patients into trials most often cite altruistic motivations, while those who decline enrollment are most often concerned with the severity of the patients' condition.

Surrogate Satisfaction with Decision Making After Intracerebral Hemorrhage.

Surrogate decision makers for patients with intracerebral hemorrhage (ICH) are frequently asked to make difficult decisions on use of life-sustaining treatments. We explored ICH surrogate satisfaction with decision making and experience of decision regret using validated measures in a prospective multicenter study. Cases of non-traumatic ICH were enrolled from three hospitals (September 2015-December 2016), and surrogate decision makers were invited to complete a self-administered survey. The primary outcome was the 10-item decision-making subscale of the Family Satisfaction in the Intensive Care Unit scale (FSICU-DM, range 0-100, higher is greater satisfaction), and the secondary outcome was the decision regret scale (range 0-100, higher is greater regret). Linear regression models were used to assess the association between satisfaction with decision making and pre-specified covariates using manual backward selection. A total of 73 surrogates were approached for participation (in person or mail), with 48 surrogates returning a completed survey (median surrogate age 60.5years, 63% female, 77% white). Patients had a median age of 72.5, 54% were female, with a median admission Glasgow coma scale of 10, in-hospital mortality of 31%, and 56% with an in-hospital DNR order. Physicians commonly made treatment recommendation (> 50%) regarding brain surgery or transitions to comfort measures, but rarely made recommendations (< 20%) regarding DNR orders. Surrogate satisfaction with decision making was generally high (median FSICU-DM 85, IQR 57.5-95). Factors associated with higher satisfaction on multivariable analysis included greater use of shared decision making (P < 0.0001), younger patient age (p = 0.02), ICH score of 3 or higher (p = 0.03), and surrogate relationship (spouse vs. other, p = 0.02). Timing of DNR orders was not associated with satisfaction (P > 0.25). Decision regret scores were generally low (median 12.5, IQR 0-31.3). Considering the severity and abruptness of ICH, it is reassuring that surrogate satisfaction with decision making was generally high and regret was generally low. However, more work is needed to define the appropriate outcome measures and optimal methods of recruitment for studies of surrogate decision makers of ICH patients.

Concerns of surrogate decision makers for patients with acute brain injury: A US population survey.

To 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. Participants 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. The 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. Although 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.

Modern family: Texas critical care clinicians need to know about informal marriage

Critical care clinicians are legally and ethically obligated to identify the appropriate surrogate decision-makers for patients who lack capacity and cannot make medical decisions for themselves. When the identification of the appropriate surrogate is streamlined, patient care is improved due to an uninterrupted and consistent plan of care that adheres to patient preferences. However, the process of identifying this “appropriate” person can be complex, especially as interpersonal relationships have evolved over time. One such modern family relationship is informal marriage, a Texas-specific relationship formerly known as “common-law” marriage. Though crucially important, this relationship is can difficult to recognize and frequently misunderstood.&#x0D; Utilizing a case study that illustrates the impact the existence of an informal marriage has on medical decision-making, this paper seeks to demystify informal marriage by outlining what makes a relationship an informal marriage and provide tools to assist clinicians with identifying it. In an age where non-traditional relationships are more common, Texas critical care clinicians should be familiar enough with informal marriage to recognize it in their patients in order to efficiently identify surrogates and therefore improve patient care.

Internet health information use by surrogate decision makers of patients admitted to the intensive care unit: a multicentre survey

Internet health information use by surrogate decision makers of patients admitted to the intensive care unit: a multicentre survey

A Multidisciplinary Team-Based Approach to Improve Communication With Surrogates of Patients With Chronic Critical Illness.

Clinicians need to deliver prognostic information to surrogates of nondecisional, critically ill patients so that surrogates can make informed medical decisions that reflect the patient's values. Our objective was to implement a new approach for communicating with surrogates of patients with chronic critical illness. Surrogate decision makers of patients who were difficult to liberate from mechanical ventilation were prospectively enrolled. Surrogates met with different members of the intensive care unit treatment team for sequential 15-minute appointments to receive patient-specific assessments and education on chronic critical illness. The feasibility and acceptability of this approach were determined. A 24-question comprehension instrument was developed to assess a participant's understanding that a family member was displaying features of chronic critical illness. Each question was scored from 1 to 5, with larger scores indicating greater comprehension. Over a 15-week period, educational sessions for 9 mechanically ventilated patients were conducted. On average, 2 surrogates per patient (range: 1-4) and 6 members of the interdisciplinary team (range: 4-6) were at each meeting. Surrogates and clinicians had very positive impressions of the communication intervention. The average preintervention comprehension score was 85 of 120 (standard deviation [SD]: 8, range: 71-101). The postintervention comprehension score was greater by 5 points on average (SD: 9, range: -11 to +20 points, P = .04). Surrogates of critically ill patients approved of this novel communication approach and had a greater understanding of the patient's medical condition after the intervention.

Annals for Educators - 5 March 2019.

Annals for Educators - 5 March 2019.

Modifiable elements of ICU supportive care and communication are associated with surrogates' PTSD symptoms.

To identify specific components of ICU clinician supportive care and communication that are associated with increased post-traumatic stress disorder (PTSD) symptoms for surrogate decision makers of patients with chronic critical illness (CCI). We conducted a secondary analysis of data from a randomized controlled trial of palliative care-led meetings to provide information and support for CCI surrogates. The primary outcome for this secondary analysis was PTSD symptoms at 90days, measured by the Impact of Event Scale-Revised (IES-R). Caregiver perceptions of clinician support and communication were assessed using a version of the After-Death Bereaved Family Member Interview (ADBFMI) instrument modified for use in non-bereaved in addition to bereaved caregivers. The association between ADBFMI items and IES-R score was analyzed using multiple linear regression. Ninety-day follow up was complete for 306 surrogates corresponding to 224 patients. Seventy-one percent of surrogateswere female, and the mean age was 51years. Of the domains, negative perception of the patient's physical comfort and emotional support was associated with the greatest increase in surrogate PTSD symptoms (beta coefficient 1.74, 95% CI 0.82-2.65). The three specific preselected items associated with increased surrogate PTSD symptoms were surrogate perception that clinicians did not listen to concerns (beta coefficient 10.7, 95% CI 3.6-17.9), failure of the physician to explain how the patient's pain would be treated (beta coefficient 12.1, 95% CI 4.9-19.3), and lack of sufficient religious contact (beta coefficient 11.7, 95% CI 2-21.3). Modifiable deficits in ICU clinician support and communication were associated with increased PTSD symptoms among CCI surrogates.

Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation: A Randomized Clinical Trial.

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. 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. Multicenter, parallel, randomized, clinical trial. (ClinicalTrials.gov: NCT01751061). 13 medical and surgical ICUs at 5 hospitals. Adult patients receiving prolonged mechanical ventilation and their surrogates, ICU physicians, and ICU nurses. 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. 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. 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. Contamination among clinicians could have biased results toward the null hypothesis. 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. National Institutes of Health.

Risk Factors for Post-Traumatic Stress Disorder Symptoms in Surrogate Decision-Makers of Patients with Chronic Critical Illness.

Chronically critically ill patients are often dependent on family members for surrogate decision-making, and these surrogates are at high risk for emotional distress. We hypothesized that patient- and surrogate-specific risk factors for surrogate post-traumatic stress disorder (PTSD) symptoms can be identified early in the course of chronic critical illness. To identify risk factors for PTSD symptoms in surrogate decision-makers of chronically critically ill patients. We performed a secondary analysis of the database from a multicenter randomized trial of a communication intervention for chronic critical illness patients and surrogates. Variables preselected for plausible mechanism for increasing PTSD symptoms and identifiable by Day 10 of mechanical ventilation were included in the analysis for association with surrogate PTSD symptoms at 90 days, as measured by the Impact of Events Score-Revised (IES-R). Patient factors included demographics, insurance status, baseline functional status, chronic comorbidities, illness severity, and presence of advance directive. Surrogate variables included demographics, education level and employment, religion, relationship to patient, and Hospital Anxiety and Depression Scale score measured at enrollment. Multivariable linear regression models were then constructed for 26 potential risk factors, including biologically or mechanistically plausible confounders for each, with IES-R score as the outcome. All models were adjusted for multiple respondents, using a mixed model, considering the patients as a random factor. Our analysis included 306 surrogates for 224 patients. A total of 49% of patients were female, and mean age was 59 years (95% confidence interval [CI], 56.4-60.7). A total of 71% of surrogates were female, and mean age was 51 years (95% CI, 49.3-52.4). After examining each potential risk factor in a separate multivariable model, only Day-10 surrogate Hospital Anxiety and Depression Scale score (β coefficient = 1.02; 95% CI, 0.73-1.30) and patient unresponsiveness (β coefficient = 8.39; 95% CI, 0.83-15.95) were associated with higher IES-R scores. Among surrogate decision-makers for chronically critically ill patients, high anxiety and depression scores and patient unresponsiveness on or near Day 10 of mechanical ventilation are risk factors for PTSD symptoms at 90 days.

How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role.

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. Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial. Medical ICUs at four U.S. hospitals. 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. Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner. 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. 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.

Numeracy and Interpretation of Prognostic Estimates in Intracerebral Hemorrhage Among Surrogate Decision Makers in the Neurologic ICU.

Clinicians caring for patients with intracerebral hemorrhage must often discuss prognosis and goals of care with their patients' surrogate decision makers, and may make numeric estimates of likelihood of survival and functional independence, informed by validated prediction models. Surrogates' prognostic estimates are often discordant with physicians', suggesting that physicians' numeric statements may not be accurately interpreted. We sought to assess the relationship between numeracy and interpretation of prognostic estimates in intracerebral hemorrhage among surrogate decision makers. We also assessed surrogates' application of prognostic estimates to decisions regarding goals of care. Single-center, survey-based, cross-sectional study. Twenty-two-bed neurologic ICU at an urban, academic hospital. Surrogate decision makers for patients admitted to the neurologic ICU. Participants completed a survey containing five clinical vignettes describing patients with nontraumatic intracerebral hemorrhage. For each patient, numerical estimates of survival and functional independence were explicitly provided, based on the validated outcome risk stratification scale (intracerebral hemorrhage score) and the Prediction of Functional Outcome in Patients with Primary Intracerebral Hemorrhage score. Participants were asked to make their own prognostic estimates, as well as to describe their preferred goals of care for each hypothetical patient. Respondent demographics were collected, and numeracy was assessed using a modified Lipkus 11-item scale. Poor numeracy was common (42 of 96 total subjects) in this relatively highly educated population. Most prognostic estimates (55%) made by surrogates were discordant with the provided estimates. High numeracy correlated with better concordance (odds ratio, 23.9 [5.57-97.64]; p < 0.001), independent of several factors, including level of education and religion. Numeracy also affected goals-of-care decisions made by surrogates. Poor numeracy is common among surrogate decision makers in an intensive care setting and poses a barrier to communication between surrogates and clinicians regarding prognosis and goals of care.

Survey on Perceived Impact of Religion, Culture, and Social Network Information on Surrogate Decision-making in a South Asian Developed Country.

Introduction:Relatives often have to assume responsibility for making end of life choices as surrogate decision-makers for patients with diminished or are lacking capacity. Our aim was to study the influence of religion, culture and social network information on surrogate decision making.Methods:This study was an exploratory, prospective, survey. Questions addressed the role of surrogates in decision making and the importance and influence of religion, culture and social media on such decisions.Results:34 respondents filled out the anonymous survey. Surrogate decision making is a complex process and influenced by many factors.Conclusion:This survey points to a need for wider studies looking at the factors influencing people when making such important decisions and further social psychology interventions to evaluate whether such decisions can be made more consistent and patient centred.

Experiences of elderly spouses who serve as surrogate decision makers for patients with cerebrovascular disease who have difficulty with communication at acute care hospitals

Experiences of elderly spouses who serve as surrogate decision makers for patients with cerebrovascular disease who have difficulty with communication at acute care hospitals

Development and usability testing of a Web-based decision aid for families of patients receiving prolonged mechanical ventilation.

BackgroundWeb-based decision aids are increasingly important in medical research and clinical care. However, few have been studied in an intensive care unit setting. The objectives of this study were to develop a Web-based decision aid for family members of patients receiving prolonged mechanical ventilation and to evaluate its usability and acceptability.MethodsUsing an iterative process involving 48 critical illness survivors, family surrogate decision makers, and intensivists, we developed a Web-based decision aid addressing goals of care preferences for surrogate decision makers of patients with prolonged mechanical ventilation that could be either administered by study staff or completed independently by family members (Development Phase). After piloting the decision aid among 13 surrogate decision makers and seven intensivists, we assessed the decision aid’s usability in the Evaluation Phase among a cohort of 30 surrogate decision makers using the Systems Usability Scale (SUS). Acceptability was assessed using measures of satisfaction and preference for electronic Collaborative Decision Support (eCODES) versus the original printed decision aid.ResultsThe final decision aid, termed ‘electronic Collaborative Decision Support’, provides a framework for shared decision making, elicits relevant values and preferences, incorporates clinical data to personalize prognostic estimates generated from the ProVent prediction model, generates a printable document summarizing the user’s interaction with the decision aid, and can digitally archive each user session. Usability was excellent (mean SUS, 80 ± 10) overall, but lower among those 56 years and older (73 ± 7) versus those who were younger (84 ± 9); p = 0.03. A total of 93% of users reported a preference for electronic versus printed versions.ConclusionsThe Web-based decision aid for ICU surrogate decision makers can facilitate highly individualized information sharing with excellent usability and acceptability. Decision aids that employ an electronic format such as eCODES represent a strategy that could enhance patient-clinician collaboration and decision making quality in intensive care.Electronic supplementary materialThe online version of this article (doi:10.1186/s13613-015-0045-0) contains supplementary material, which is available to authorized users.