Family Surrogate Decision Makers Research Articles

Abstract 6: Financial Concerns Are Common Among Family Members of Severe Stroke Patients: A Mixed Methods Study

Background: Stroke has a large aggregate financial impact, however the prevalence and predictors of cost concerns among family members of severe stroke patients are unknown. Methods: Family surrogate decision makers of severe stroke patients were recruited from the BASIC and OASIS projects in a South Texas community. Clinical information was obtained from medical charts. Patient and family member sociodemographic information was obtained from surveys, conducted at baseline and 3-, 6-, and 12-months post-stroke. The primary outcome was presence of cost concerns among family members, defined as being “very worried” or “moderately worried” about being able to pay stroke-related medical costs at any time point. Exploratory multivariable logistic regression models identified factors associated with cost concerns. A subset of participants also completed qualitative semi-structured interviews exploring the nature of cost concerns. Results: Of 2,917 stroke cases between April 2016 and September 2020, 465 were eligible, and 318 family members of 256 stroke patients participated. Patients were 52% female, 58% Mexican American (MA), with mean age of 75 (SD 14), and mean National Institutes of Health Stroke Scale score of 15 (SD 11). Family members were 76% female, 63% MA, with mean age of 56 (SD 13). Of 256 patients, 118 (46%) had a family member who reported having cost concerns. In a fully adjusted model (see Table), MA ethnicity and lack of insurance were associated with greater cost concerns. Cost concerns were less common over time and with patient death, and were less common among family members who were neither a spouse nor child of the patient. Interview data revealed that concerns were most often related to costs of post-acute care (excerpts included in the Table). Conclusions: Nearly half of all severe stroke patients have a family member with concerns about affording their medical care. Providers should seek to elicit cost concerns and provide resources to address them.

Barriers to Surrogate Application of Patient Values in Medical Decisions in Acute Stroke: Qualitative Study in a Biethnic Community.

The objective of this study was to identify barriers to surrogate decision-maker application of patient values on life-sustaining treatments after stroke in Mexican American (MA) and non-Hispanic White (NHW) patients. We conducted a qualitative analysis of semistructured interviews with stroke patient surrogate decision-makers completed approximately 6months after hospitalization. Forty-two family surrogate decision-makers participated (median age: 54.5years; female: 83%; patients were MA [60%] and NHW [36%], and 50% were deceased at the time of the interview). We identified three primary barriers to surrogates' applications of patient values and preferences when making decisions on life-sustaining treatments: (1) a minority of surrogates had no prior discussion of what the patient would want in the event of a serious medical illness, (2) surrogates struggled to apply prior known values and preferences to the actual decisions made, and (3) surrogates felt guilt or burden, often even in the setting of some knowledge of patient values or preferences. The first two barriers were seen to a similar degree in MA and NHW participants, though guilt or burden was reported more commonly among MA (28%) than NHW (13%) participants. Maintaining patient independence (e.g., ability to live at home, avoid a nursing home, make their own decisions) was the most important priority for decision-making for both MA and NHW participants; however, MA participants were more likely to list spending time with family as an important priority (24% vs. 7%). Stroke surrogate decision-makers may benefit from (1) continued efforts to make advance care planning more common and more relevant, (2) assistance in how to apply their knowledge of patient values to actual treatment decisions, and (3) psychosocial support to reduce emotional burden. Barriers to surrogate application of patient values were generally similar in MA and NHW participants, though the possibility of greater guilt or burden among MA surrogates warrants further investigation and confirmation.

"They Would Lift My Spirits": Sources of Support for Family Surrogate Decision-Makers at the End of Life.

Surrogate decision-makers make critical decisions for loved ones at the end of life, and some experience lasting negative psychological outcomes. Understanding whom they rely on for support and the types of support they value may inform nursing care and that of other health team members who work with surrogates. The purpose of the study was to explore decision support and other types of support provided to surrogate decision-makers at the end of life of their loved one and perceived usefulness of the support. This secondary analysis of data from a mixed-methods study involved the examination of the transcripts of qualitative interviews with 13 surrogate decision-makers in the United States, conducted between 2010 and 2014. A constant comparative method was used to identify common themes surrounding surrogate decision support at the end of life. Surrogates valued advance directives and conversations with their loved one about treatment preferences. Surrogates described involving many different types of people in decision-making and other types of support. Finally, surrogates appreciated being reassured that they were doing a good job in making decisions and seemed to seek out this type of affirmation from various sources including the health care team, family, and friends. Nurses are well-positioned to provide this affirmation because of the time that they spend caring for the patient and family. Future research should further explore the concept of affirmation of surrogates in their role as a means of support as they make decisions for a loved one.

Abstract WP72: Psychological Distress Is Prevalent Among Family Surrogate Decision Makers In The Year After Stroke And Differs By Ethnicity

Introduction: We investigated long-term psychological distress among stroke family surrogate decision makers in Mexican Americans (MAs) and non-Hispanic Whites (NHWs). Methods: Ischemic and hemorrhagic stroke patients from the Brain Attack Surveillance in Corpus Christi (BASIC) project and their family surrogate decision makers from the Outcomes Among Surrogate Decision Makers in Stroke (OASIS) were enrolled. Family surrogates completed validated measures of post-traumatic stress (NSESSS), anxiety (GAD-7), and depression (PHQ-8) at discharge, 3, 6, and 12 months. Ethnic differences were assessed with multilevel linear mixed models, sequentially adjusted for pre-specified covariates as shown in the table. Results: There were 301 family surrogates for 241 stroke patients. MA patients were younger and less likely than NHWs to have died before the initial outcome interview (43% vs 56%, p=0.05), with no difference in baseline severity. MA family surrogates had lower educational attainment, income, and less use of advance care plans than NHWs. High scores on measures of psychological distress were common at all time points (Table). All psychological outcomes were worse among MAs on unadjusted analyses (Table). Symptoms of post-traumatic stress remained worse among MAs in the fully-adjusted model. Ethnic differences in anxiety were attenuated after adjustment for family demographics. Ethnic differences in depression were attenuated after adjustment for socioeconomic factors. Advance care plans were not associated with outcomes after accounting for other covariates and did not seem to confound any ethnic differences. Conclusions: Psychological distress is prevalent among family surrogate decision makers in the year after stroke and may be worse among MAs. Efforts are needed to support family members of all ethnic groups after severe strokes.

Family surrogate decision-makers’ perspectives in decision-making of patients with disorders of consciousness

ABSTRACT To explore and describe the experience of decision-making for patients with disorders of consciousness (DOC) from the perspectives of family surrogate decision-makers. A total of 21 face-to-face interviews with family surrogate decision-makers from a tertiary hospital in Shanghai, China were conducted from January 2021 to February 2021. Thematic analysis was used for data analysis. Four main themes were identified and were included in this study: (1) a tough choice between life and dignity, (2) a major responsibility for patient’s voice, (3) complex considerations between ethics and morals, and (4) the importance of realistic basis. The surrogate decision-making of DOC patients in China has been affected by the Chinese cultural context and several practical roots. And the family surrogate decision-makers shared their experiences of trade-offs during the decision-making process. Moreover, family surrogate decision-makers realized their serious responsibility to make a decision that would be in the best interest of DOC patients.

Partnership to Enhance Resident Outcomes for Community Living Center Residents With Dementia: Description of the Protocol and Preliminary Findings.

The goal of this quality improvement project is to improve care planning around preferences for life-sustaining treatments (LST) and daily care to promote quality of life, autonomy, and safety for U.S. Department of Veterans Affairs (VA) Community Living Center (CLC) (i.e., nursing home) residents with dementia. The care planning process occurs through partnerships between staff and family surrogate decision makers. This process is separate from but supports implementation of the LST Decision Initiative-developed by the VA National Center for Ethics in Health Care-which seeks to increase the number, quality, and documentation of goals of care conversations (GOCC) with Veterans who have life-limiting illnesses. The current authors will engage four to six VA CLCs in the Mid-Atlantic states, provide teams with audit and feedback reports, and establish learning collaboratives to address implementation concerns and support action planning. The expected outcomes are an increase in CLC residents with dementia who have documented GOCC and LST plans. [Journal of Gerontological Nursing, 45(3), 21-30.].

Development of a Decision Aid for Family Surrogate Decision Makers of Critically Ill Patients Requiring Renal Replacement Therapy in ICU: User-Centered Design for Rapid Prototyping.

Objectives Renal replacement therapy (RRT) is increasingly adopted for critically ill patients diagnosed with acute kidney injury, but the optimal time for initiation remains unclear and prognosis is uncertain, leading to medical complexity, ethical conflicts, and decision dilemmas in intensive care unit (ICU) settings. This study aimed to develop a decision aid (DA) for family surrogate of critically ill patients to support their engagement in shared decision-making process with clinicians. Methods Development of DA employed a systematic process with user-centered design (UCD) principle, which included: (i) competitive analysis: searched, screened, and assessed the existing DAs to gather insights for design strategies, developmental techniques, and functionalities; (ii) user needs assessment: interviewed family surrogates to explore target user group's decision-making experience and identify their unmet needs; (iii) evidence syntheses: integrate latest clinical evidence and pertinent information to inform the content development of DA.Results The competitive analysis included 16 relevant DAs, from which we derived valuable insights from existing resources. User decision needs were explored among a cohort of 15 family surrogates, revealing four thematic issues in decision-making, including stuck into dilemmas, sense of uncertainty, limited capacity, and delayed decision confirmation. A total of 27 articles were included for evidence syntheses. Relevant decision-making knowledge on disease and treatment, as delineated in the literature sourced from decision support system or clinical guidelines, were formatted as the foundational knowledge base. Twenty-one items of evidence were extracted and integrated into the content panels of benefits and risks of RRT, possible outcomes, and reasons to choose. The DA was drafted into a web-based phototype using the elements of UCD. This platform could guide users make preparation of decision-making through a sequential four-step progress: identifying treatment options, weighing the benefits and risks, clarifying personal preferences and values, and formulating a schedule for formal shared decision-making with clinicians.Conclusions We developed a rapid prototype of DA tailored for family surrogate decision makers of critically ill patients in need of RRT in ICU setting. Future studies are needed to evaluate its usability, feasibility, and clinical effects of this intervene.

Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial.

Family caregivers of patients with chronic critical illness experience significant psychological distress. To determine whether family informational and emotional support meetings led by palliative care clinicians improve family anxiety and depression. A multicenter randomized clinical trial conducted from October 2010 through November 2014 in 4 medical intensive care units (ICUs). Adult patients (aged ≥21 years) requiring 7 days of mechanical ventilation were randomized and their family surrogate decision makers were enrolled in the study. Observers were blinded to group allocation for the measurement of the primary outcomes. At least 2 structured family meetings led by palliative care specialists and provision of an informational brochure (intervention) compared with provision of an informational brochure and routine family meetings conducted by ICU teams (control). There were 130 patients with 184 family surrogate decision makers in the intervention group and 126 patients with 181 family surrogate decision makers in the control group. The primary outcome was Hospital Anxiety and Depression Scale symptom score (HADS; score range, 0 [best] to 42 [worst]; minimal clinically important difference, 1.5) obtained during 3-month follow-up interviews with the surrogate decision makers. Secondary outcomes included posttraumatic stress disorder experienced by the family and measured by the Impact of Events Scale-Revised (IES-R; total score range, 0 [best] to 88 [worst]), discussion of patient preferences, hospital length of stay, and 90-day survival. Among 365 family surrogate decision makers (mean age, 51 years; 71% female), 312 completed the study. At 3 months, there was no significant difference in anxiety and depression symptoms between surrogate decision makers in the intervention group and the control group (adjusted mean HADS score, 12.2 vs 11.4, respectively; between-group difference, 0.8 [95% CI, -0.9 to 2.6]; P = .34). Posttraumatic stress disorder symptoms were higher in the intervention group (adjusted mean IES-R score, 25.9) compared with the control group (adjusted mean IES-R score, 21.3) (between-group difference, 4.60 [95% CI, 0.01 to 9.10]; P = .0495). There was no difference between groups regarding the discussion of patient preferences (intervention, 75%; control, 83%; odds ratio, 0.63 [95% CI, 0.34 to 1.16; P = .14]). The median number of hospital days for patients in the intervention vs the control group (19 days vs 23 days, respectively; between-group difference, -4 days [95% CI, -6 to 3 days]; P = .51) and 90-day survival (hazard ratio, 0.95 [95% CI, 0.65 to 1.38], P = .96) were not significantly different. Among families of patients with chronic critical illness, the use of palliative care-led informational and emotional support meetings compared with usual care did not reduce anxiety or depression symptoms and may have increased posttraumatic stress disorder symptoms. These findings do not support routine or mandatory palliative care-led discussion of goals of care for all families of patients with chronic critical illness. clinicaltrials.gov Identifier: NCT01230099.

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.

A Conceptual Model of Family Surrogate End-of-Life Decision-Making Process in the Nursing Home Setting: Goals of Care as Guiding Stars

An increasing proportion of dying is occurring in America's nursing homes (NH). Family members are involved in (and affected by) medical decision-making on behalf of NH residents approaching the end of life, especially when the resident is cognitively impaired. This article proposes an empirically derived conceptual model of the key factors NH family surrogate decision-makers consider when establishing or changing goals of care and the iterative process as applied to the NH setting. This model also establishes the importance of family social role expectations toward their loved one as well as the concept, “stance toward dying,” as key in establishing or changing the main goal of care. NH staff and physicians can use the model as a framework for providing information and support to family members. Research is needed to better understand how to prepare staff and settings to support family surrogate decision-makers, in particular around setting goals of care. The model can be generalized beyond nursing homes.

Neglect of quality-of-life considerations in intensive care unit family meetings for long-stay intensive care unit patients*

To examine the frequency with which quality of life and treatment limitation were discussed in formal family meetings for long-stay intensive care unit patients with high risk for mortality and morbidity. Descriptive observational study. Five intensive care units. One hundred sixteen family surrogate decisionmakers of long-stay intensive care unit patients who participated in an intensive communication system that aimed to provide weekly meetings with family decisionmakers. The structure of each meeting was to address medical update, patient preferences, treatment plan, and milestones for evaluating the treatment plan. None. We audiotaped initial family meetings for 116 family decisionmakers for a total of 180 meetings. On average, meetings were 24 mins long with a majority of time being devoted to nonemotional speech and little (12%) spent discussing patient preferences. Quality of life was discussed in 45% and treatment limitation in 23% of all meetings. Quality-of-life discussions were more likely to occur when patients were admitted to a medical intensive care unit (odds ratio [OR] 5.9; p = .005), have a family decisionmaker who is a spouse (OR 9.4; p = .0001), were older (OR 1.04; p = 01), have a shorter length of stay (OR 0.93; p = .001), and have a family decisionmaker who was a spouse (OR 5.1; p = .002). For those with a treatment limitation discussion, 67% had a do-not-resuscitate order, 40% were admitted to a medical intensive care unit, 56% had a family decisionmaker who had been their caregiver, and 48% of their family decisionmakers were their children. To guide discussion with families of the subset of intensive care unit patients with high risk of mortality and long-term morbidity, quality of life was not consistently addressed. Continued efforts to assist clinicians in routinely including discussions of quality-of-life outcomes is needed.

Family surrogate decision making at the end of life: seeing them through with care and respect.

Family surrogate decision makers are pivotal in end-of-life decision-making processes. The author investigated decision-making experiences of 20 surrogates who assisted terminally ill family members for this grounded theory study. Findings describe a basic social process of Seeing Them Through With Care and Respect, during which surrogates continuously synthesized the core values of caring for their family member and respecting their family member's autonomy. Surrogate narratives began with Learning the Diagnosis. The major categories of surrogate decision makers' activities during the process were Standing With and Acting For the ill family member. Events reported in two gating categories, Brokering Information and Working With Family, facilitated or impeded decision making. A final category, Outcomes, reports consequences for the surrogate of having been a decision maker.