Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill.
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ABSTRACT:
SUBMITTER: Hickman RL
PROVIDER: S-EPMC5573593 | biostudies-other | 2014 Mar
REPOSITORIES: biostudies-other
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Project description:BackgroundRecent discussions about health care reform have raised questions regarding the value of advance directives.MethodsWe used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making.ResultsOf 3746 subjects, 42.5% required decision making, of whom 70.3% lacked decision-making capacity and 67.6% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%); 83.2% of subjects who requested limited care and 97.1% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care.ConclusionsBetween 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.
| S-EPMC2880881 | biostudies-literature
Project description:ImportanceThe value of advance care planning (ACP) has been the subject of recent debate because of mixed findings. This may be, in part, because trials presume that researchers and patient spokespersons share the same understanding of the role of a surrogate decision-maker. We explored how patient surrogates conceptualized and defined surrogate decision-making vs patient advocacy. Understanding how surrogates perceive their role in decision-making is important to avoid misinterpreting the effectiveness of ACP interventions.ObjectiveTo understand how patient spokespersons distinguish surrogate decision-making from patient advocacy.Design, setting, and participantsThis qualitative thematic analysis of a subsample of participants from a randomized clinical trial at a tertiary medical center was conducted from September 27, 2012, to June 30, 2021. Participants (n = 36) were the designated spokespersons of adult patients with severe illness who had made a surrogate decision on behalf of the patient since the last follow-up. Analysis was performed from March 21, 2021, to February 7, 2022.Main outcomes and measuresSemistructured interviews examined how patient spokespersons conceptualize differences between surrogate decision-making and advocacy.ResultsThe study included 36 patient spokespersons (32 women [88.9%]; mean [SD] age, 62.1 [11.8] years) and found substantial variability in how the spokespersons conceptualized what it means to make a surrogate decision for another. A total of 10 spokespersons (27.8%) did not distinguish surrogate decision-making from advocacy. There were 5 definitions for both surrogate decision-making and advocacy. The 3 most common definitions of surrogate decision-making were (1) acting as the final decision-maker (18 [50.0%]), (2) doing what is best for the patient (8 [22.2%]), and (3) making decisions on behalf of patients so that their wishes are respected (6 [16.7%]). The 3 most common definitions of advocacy were (1) doing what is best for the patient (8 [22.2%]), (2) respecting patients' wishes (6 [16.7%]), and (3) providing support to the patient (6 [16.7%]). The most common pairing of definitions by an individual spokesperson involved defining surrogate decision-making as being the final decision-maker, and defining advocacy as acting in the best interest of the patient (6 [16.7%]).Conclusions and relevanceThis qualitative study found that many spokespersons perceive their roles as surrogate decision-makers differently than clinicians and researchers likely do, often conflating surrogacy with advocacy. These findings may help explain why researchers have found that ACP does not consistently improve traditional outcomes. If spokespersons do not distinguish surrogate decision-making from advocacy, then what is being reported by spokespersons and measured by clinicians and researchers may not accurately reflect the true association of ACP with outcomes.
| S-EPMC9856522 | biostudies-literature
Project description:Advance directives are a sensitive issue among traditional Chinese people, who usually refrain from mentioning this topic until it is imperative. Medical decisions for cancer patients are made by their families, and these decisions might violate patients' personal will.This study aimed to examine the acceptance of advance directives among Chinese cancer patients and their families and patient participation in this procedure and, finally, to analyze the moral risk involved.While 246 patients and their family members refused official discussion of an advance directive, the remaining 166 patients and their families accepted the concept of an advance directive and signed a document agreeing to give up invasive treatment when the anti-cancer treatment was terminated. Of these, only 24 patients participated in the decision making. For 101 patients, anti-cancer therapy was ended prematurely with as many as 37 patients not told about their potential loss of health interests.Participants were 412 adult cancer patients from 9 leading hospitals across China. An advance directive was introduced to the main decision makers for each patient; if they wished to sign it, the advance directive would be systematically discussed. A questionnaire was given to the oncologists in charge of each patient to evaluate the interaction between families and patients, patients' awareness of their disease, and participation in an advance directive.Advance directives were not widely accepted among Chinese cancer patients unless anti-cancer therapy was terminated. Most cancer patients were excluded from the discussion of an advance directive.
| S-EPMC5542195 | biostudies-other
Project description:The purpose of this study was to examine the psychometric properties of the Advance Directive Attitude Survey in Korean (K-ADAS), a measure of attitudes toward advance directives (ADs). A total of 118 low-income, community-dwelling older adults (mean age, 75.09 years) participated. An exploratory factor analysis (EFA) was conducted to determine the factor structure of the K-ADAS. Validity was further assessed by known associations of the K-ADAS with perceived susceptibility and severity using part of the Advance Care Planning surveys. Its reliability was examined by calculating alpha coefficients. EFA determined a three-factor structure model with good model fit. Validity was further supported with significant correlations between the K-ADAS and susceptibility and severity. Reliability was supported by adequate level of Cronbach's alpha. The K-ADAS was a valid and reliable measure for assessment of AD attitudes with a sound model fit. Thus, the K-ADAS can be used to assess AD attitudes among community-dwelling elders.
| S-EPMC7151054 | biostudies-literature
Project description:The prevalence of patients who are Incapacitated with No Evident Advance Directives or Surrogates (INEADS) remains unknown because such data are not routinely captured in structured electronic health records. This study sought to develop and validate a natural language processing (NLP) algorithm to identify information related to being INEADS from clinical notes. We used a publicly available dataset of critical care patients from 2001 through 2012 at a United States academic medical center, which contained 418,393 relevant clinical notes for 23,904 adult admissions. We developed 17 subcategories indicating reduced or elevated potential for being INEADS, and created a vocabulary of terms and expressions within each. We used an NLP application to create a language model and expand these vocabularies. The NLP algorithm was validated against gold standard manual review of 300 notes and showed good performance overall (F-score = 0.83). More than 80% of admissions had notes containing information in at least one subcategory. Thirty percent (n = 7,134) contained at least one of five social subcategories indicating elevated potential for being INEADS, and <1% (n = 81) contained at least four, which we classified as high likelihood of being INEADS. Among these, n = 8 admissions had no subcategory indicating reduced likelihood of being INEADS, and appeared to meet the definition of INEADS following manual review. Among the remaining n = 73 who had at least one subcategory indicating reduced likelihood of being INEADS, manual review of a 10% sample showed that most did not appear to be INEADS. Compared with the full cohort, the high likelihood group was significantly more likely to die during hospitalization and within four years, to have Medicaid, to have an emergency admission, and to be male. This investigation demonstrates potential for NLP to identify INEADS patients, and may inform interventions to enhance advance care planning for patients who lack social support.
| S-EPMC9273092 | biostudies-literature
Project description:BackgroundFollowing passage of the Patient Self Determination Act in 1990, health care institutions that receive Medicare and Medicaid funding are required to inform patients of their right to make their health care preferences known through execution of a living will and/or to appoint a surrogate-decision maker. We evaluated the impact of external factors and perceived patient preferences on physicians' decisions to honor or forgo previously established advance directives (ADs). In addition, physician views regarding legal risk, patients' ability to comprehend complexities involved with their care, and impact of medical costs related to end-of-life care decisions were explored.MethodsAttendees of two Mayo Clinic continuing medical education courses were surveyed. Three scenarios based in part on previously court-litigated matters assessed impact of external factors and perceived patient preferences on physician compliance with patient-articulated wishes regarding resuscitation. General questions measured respondents' perception of legal risk, concerns over patient knowledge of idiosyncrasies involved with their care, and impact medical costs may have on compliance with patient preferences. Responses indicating strength of agreement or disagreement with statements were treated as ordinal data and analyzed using the Cochran Armitage trend test.ResultsThree hundred eighty-eight of 951 surveys were completed (41% response rate). Eighty percent reported they were likely to honor a patient's AD despite its 5 year age. Fewer than half (41%) would honor the AD of a patient in ventricular fibrillation who had expressed a desire to "pass away in peace." Few (17%) would forgo an AD following a family's request for continued resuscitative treatment. A majority (52%) considered risk of liability to be lower when maintaining someone alive against their wishes than mistakenly failing to provide resuscitative efforts. A large percentage (74%) disagreed that patients could not appreciate complexities surrounding their care while 69% agreed that costs should never impact a physician's decision as to whether to comply with a patient's AD.ConclusionsOur findings highlight the impact, albeit small, external factors have on physician AD compliance. Most respondents based their decision on the clinical situation at hand and interpretation of the patient's initial wishes and preferences expressed by the AD.
| S-EPMC3528447 | biostudies-literature
Project description:ObjectiveThe objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates' mental health and patient outcomes.MethodPart 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15-20 min modules, totaling 1.5-2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments.ResultsPart 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = -0.41), peritraumatic distress (d = -0.24), and experiential avoidance (d = -0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = -0.94), depression (d = -0.23), anxiety (d = -0.29), and experiential avoidance (d = -0.30).Significance of resultsPreliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.
| S-EPMC8741895 | biostudies-literature
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.
| S-EPMC6646989 | biostudies-literature
Project description:ContextThere are no evidence-based programs to train physicians to facilitate shared decision making based on incapacitated intensive care unit patients' values and preferences.ObjectivesThe objective of this study was to develop a high-fidelity simulation to fill this gap.MethodsCase development involved six steps: 1) drafting a case about an elderly patient receiving prolonged mechanical ventilation; 2) engaging an expert advisory board to optimize case content; 3) revising the case based on advisory board input; 4) training actors to portray the case patient's daughter; 5) obtaining physician feedback on the simulation; and 6) revising the case based on their feedback. We conducted a cross-sectional pilot study with 50 physicians to assess feasibility and acceptability, defined a priori as an enrollment rate >40 physicians/year, study procedures <75 minutes/participant, >95% actor adherence to standardization rules, and high physician ratings of realism and acceptability.ResultsAdvisory panel feedback yielded two modifications: 1) refocusing the case on decision making about tracheostomy and percutaneous gastrostomy and 2) making the patient's values more authentic. Physician feedback yielded two additional modifications: 1) reducing how readily the actor divulged the patient's values and 2) making her more emotional. All 50 physicians enrolled in the pilot study over 11 months completed study procedures in <75 minutes. Actor adherence to standardization rules was 95.8%. Physicians' mean ratings of realism and acceptability were 8.4 and 9.1, respectively, on a 10-point scale.ConclusionSimulation is feasible, is acceptable, and can be adequately standardized to study physicians' skills for facilitating surrogate decision making based on an incapacitated intensive care unit patient's values and preferences.
| S-EPMC6348012 | biostudies-literature
Project description:Background: Advance care planning (ACP) is intended to help patients and their spokespersons prepare for end-of-life decision making, yet little is known about what factors influence the extent to which spokespersons feel prepared for that role. Objective: To examine spokespersons' perceived preparedness for surrogate decision making after engaging in ACP. Design: Mixed methods experimental design with qualitative thematic analysis and data transformation (creating categorical data from rich qualitative data) of interviews collected during a randomized controlled trial (2012-2017). Setting/Participants: Two tertiary care medical centers (Hershey, PA and Boston, MA). Of 285 dyads (patients with advanced illness and their spokespersons) enrolled in the trial, 200 spokesperson interviews were purposively sampled and 198 included in the analyses. Main Outcomes and Measures: Interviews with spokespersons (four weeks post-intervention) explored spokespersons' perceived preparedness for surrogate decision making, occurrence of ACP conversations, and spokespersons' intentions regarding future surrogate decisions. Data transformation was used to categorize participants' responses into three categories: Very Prepared, Very Unprepared, or In Between Prepared and Unprepared. Themes and categories were compared across arms. Results: About 72.72% of spokespersons (144/198) reported being Very Prepared and 27.28% (54/198) reported being Very Unprepared or In Between with no differences in preparedness across study arms. Occurrence of post-intervention ACP conversations did not influence perceived preparedness; however, spokespersons who used an ACP decision aid reported more conversations. Four themes emerged to explain spokespersons' perceived preparedness: (1) perceptions about ACP; (2) level of comfort with uncertainty; (3) relational issues; and (4) personal characteristics. Regarding future intentions, it emerged that spokespersons believed their knowledge of patient wishes, as well as other personal, relational, situational, and emotional factors would influence their surrogate decisions. Conclusions: Factors extrinsic to specific ACP interventions influence how prepared spokespersons feel to act as spokespersons. Understanding these factors is important for understanding how to improve concordance between patients' stated end-of-life wishes and surrogate decisions. Trial Registration: NCT02429479.
| S-EPMC8215421 | biostudies-literature