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Background: Left ventricular assist device (LVAD) evaluation includes a psychosocial assessment, conducted by social workers (SWs) on the advanced heart failure multidisciplinary team. Postdischarge caregiving plans are central to psychosocial evaluation. Caregiving’s relationship with LVAD outcomes is mixed, and testing patients’ social resources may disadvantage those from historically undertreated groups. We describe variation in policies defining adequate caregiving plans post-LVAD implant and possible impacts on patients from marginalized groups. Methods: This was a 2-phase sequential mixed-methods study: (1) phase 1, survey of US-based LVAD SWs, describing assessment structure and policies guiding candidacy outcomes; and (2) phase 2, individual interviews with SWs to further describe how caregiving plan adequacy impacts LVAD candidacy. Results: Sixty-seven SWs returned surveys (rr=47%) from unique programs. Caregiving plan inadequacy (n=30) was the most common psychosocial dealbreaker. When asked what duration of caregiving is required, 23% indicated ≥3 months, 27% 4 to 12 weeks, and 30% Conclusions: Policies regarding adequate duration of 24/7 caregiving vary, but inadequate caregiving plans are the most common psychosocial contraindication. Participants worry about patients’ ability to meet restrictive requirements, particularly from historically undertreated groups. This highlights a need to operationalize quality caregiving, standardize assessment, and support medically appropriate patients with strained social resources.

Background: Major gaps exist in the routine initiation and dose up-titration of guideline-directed medical therapies (GDMT) for patients with heart failure with reduced ejection fraction. Without novel approaches to improve prescribing, the cumulative benefits of heart failure with reduced ejection fraction treatment will be largely unrealized. Direct-to-consumer marketing and shared decision making reflect a culture where patients are increasingly involved in treatment choices, creating opportunities for prescribing interventions that engage patients. Methods: The EPIC-HF (Electronically Delivered, Patient-Activation Tool for Intensification of Medications for Chronic Heart Failure with Reduced Ejection Fraction) trial randomized patients with heart failure with reduced ejection fraction from a diverse health system to usual care versus patient activation tools—a 3-minute video and 1-page checklist—delivered electronically 1 week before, 3 days before, and 24 hours before a cardiology clinic visit. The tools encouraged patients to work collaboratively with their clinicians to “make one positive change” in heart failure with reduced ejection fraction prescribing. The primary endpoint was the percentage of patients with GDMT medication initiations and dose intensifications from immediately preceding the cardiology clinic visit to 30 days after, compared with usual care during the same period. Results: EPIC-HF enrolled 306 patients, 290 of whom attended a clinic visit during the study period: 145 were sent the patient activation tools and 145 were controls. The median age of patients was 65 years; 29% were female, 11% were Black, 7% were Hispanic, and the median ejection fraction was 32%. Preclinic data revealed significant GDMT opportunities, with no patients on target doses of β-blocker, sacubitril/valsartan, and mineralocorticoid receptor antagonists. From immediately preceding the cardiology clinic visit to 30 days after, 49.0% in the intervention and 29.7% in the control experienced an initiation or intensification of their GDMT ( P =0.001). The majority of these changes were made at the clinician encounter itself and involved dose uptitrations. There were no deaths and no significant differences in hospitalization or emergency department visits at 30 days between groups. Conclusions: A patient activation tool delivered electronically before a cardiology clinic visit improved clinician intensification of GDMT. Registration: URL: https://www.clinicaltrials.gov ; Unique identifier: NCT03334188.

Prior work has shown substantial between-hospital variation in do-not-resuscitate orders, but stability of do-not-resuscitate preferences between hospitalizations and the institutional influence on do-not-resuscitate reversals are unclear. We determined the extent of do-not-resuscitate reversals between hospitalizations and the association of the readmission hospital with do-not-resuscitate reversal.Retrospective cohort study.California Patient Discharge Database, 2016-2018.Nonsurgical patients admitted to an acute care hospital with an early do-not-resuscitate order (within 24 hr of admission).None.We identified nonsurgical adult patients who survived an initial hospitalization with an early-do-not-resuscitate order and were readmitted within 30 days. The primary outcome was the association of do-not-resuscitate reversal with readmission to the same or different hospital from the initial hospital. Secondary outcomes included association of readmission to a low versus high do-not-resuscitate-rate hospital with do-not-resuscitate reversal. Among 49,336 patients readmitted within 30 days following a first do-not-resuscitate hospitalization, 22,251 (45.1%) experienced do-not-resuscitate reversal upon readmission. Patients readmitted to a different hospital versus the same hospital were at higher risk of do-not-resuscitate reversal (59.5% vs 38.5%; p0.001; adjusted odds ratio = 2.4; 95% CI, 2.3-2.5). Patients readmitted to low versus high do-not-resuscitate-rate hospitals were more likely to have do-not-resuscitate reversals (do-not-resuscitate-rate quartile 1 77.0% vs quartile 4 27.2%; p0.001; adjusted odds ratio = 11.9; 95% CI, 10.7-13.2). When readmitted to a different versus the same hospital, patients with do-not-resuscitate reversal had higher rates of mechanical ventilation (adjusted odds ratio = 1.9; 95% CI, 1.6-2.1) and hospital death (adjusted odds ratio = 1.2; 95% CI, 1.1-1.3).Do-not-resuscitate reversals at the time of readmission are more common than previously reported. Although changes in patient preferences may partially explain between-hospital differences, we observed a strong hospital effect contributing to high do-not-resuscitate-reversal rates with significant implications for patient outcomes and resource.

Background: Family caregivers of patients with a destination therapy left ventricular assist device play a central and formalized role in postimplant care. We aimed to characterize longitudinal stress, predictors and correlates of stress, and coping processes among left ventricular assist device caregivers. Methods: We performed a sequential, exploratory, mixed-methods study from 6 diverse left ventricular assist device programs. The primary outcome for the quantitative analysis was the Perceived Stress Scale-10 at 6 months (0–40). Based on the quantitative findings and guided by the Transactional Model of Stress and Coping, semistructured interviews explored causes of stress and coping processes. Integration was performed during the qualitative and interpretation phase. Results: A total of 96 caregivers met inclusion criteria for quantitative analysis. Mean (SD) Perceived Stress Scale score was 14.3 (5.5) preimplant and 11.8 (6.9) at 6 months. Preimplant, only decreased preparedness for caregiving was associated with higher Perceived Stress Scale score at 6 months. At 6 months, increased caregiver depressive symptoms, decreased caregiver preparedness for caregiving, and lower patient quality of life were associated with higher Perceived Stress Scale score. Qualitative analysis of 25 caregivers revealed the causes of stress coalesced around 3 themes: (1) lack of preparedness to be a caregiver, (2) uniqueness of stress for the caregiver and patient situation, and (3) caregiving responsibilities physically and emotionally impacting caregivers. To cope with stress, most caregivers employed emotion-focused coping. Conclusions: In family caregivers of patients with a left ventricular assist device, higher perceived stress was associated with lower caregiver preparedness, higher caregiver depressive symptoms, and lower patient quality of life. Emotion-focused coping strategies were common for caregivers. Future work should better prepare caregivers for this role and support them through the caregiving experience. Registration: URL: https://www.clinicaltrials.gov ; Unique identifier: NCT02344576.

Objectives Little is known about how clinicians make the complex decision regarding whether to place an intracranial pressure monitor in children with traumatic brain injury. The objective of this study was to identify the decisional needs of multidisciplinary clinician stakeholders. Design Semi-structured qualitative interviews with clinicians who regularly care for children with traumatic brain injury. Setting One U.S. level I pediatric trauma center. Subjects Twenty-eight clinicians including 17 ICU nurses, advanced practice providers, and physicians and 11 pediatric surgeons and neurosurgeons interviewed between August 2017 and February 2018. Interventions None. Measurements and main results Participants had a mean age of 43 years (range, 30-66 yr), mean experience of 10 years (range, 0-30 yr), were 46% female (13/28), and 96% white (27/28). A novel conceptual model emerged that related the difficulty of the decision about intracranial pressure monitor placement (y-axis) with the estimated outcome of the patient (x-axis). This model had a bimodal shape, with the most difficult decisions occurring for patients who 1) had a good opportunity for recovery but whose neurologic examination had not yet normalized or 2) had a low but uncertain likelihood of neurologically functional recovery. Emergent themes included gaps in medical knowledge and information available for decision-making, differences in perspective between clinical specialties, and ethical implications of decision-making about intracranial pressure monitoring. Experienced clinicians described less difficulty with decision-making overall. Conclusions Children with severe traumatic brain injury near perceived transition points along a spectrum of potential for recovery present challenges for decision-making about intracranial pressure monitor placement. Clinician experience and specialty discipline further influence decision-making. These findings will contribute to the design of a multidisciplinary clinical decision support tool for intracranial pressure monitor placement in children with traumatic brain injury.

Objectives Prior studies investigating hospital mechanical ventilation volume-outcome associations have had conflicting findings. Volume-outcome relationships within contemporary mechanical ventilation practices are unclear. We sought to determine associations between hospital mechanical ventilation volume and patient outcomes. Design Retrospective cohort study. Setting The California Patient Discharge Database 2016. Patients Adult nonsurgical patients receiving mechanical ventilation. Interventions The primary outcome was hospital death with secondary outcomes of tracheostomy and 30-day readmission. We used multivariable generalized estimating equations to determine the association between patient outcomes and hospital mechanical ventilation volume quartile. Measurements and main results We identified 51,689 patients across 274 hospitals who required mechanical ventilation in California in 2016. 38.2% of patients died in the hospital with 4.4% receiving a tracheostomy. Among survivors, 29.5% required readmission within 30 days of discharge. Patients admitted to high versus low volume hospitals had higher odds of death (quartile 4 vs quartile 1 adjusted odds ratio, 1.40; 95% CI, 1.17-1.68) and tracheostomy (quartile 4 vs quartile 1 adjusted odds ratio, 1.58; 95% CI, 1.21-2.06). However, odds of 30-day readmission among survivors was lower at high versus low volume hospitals (quartile 4 vs quartile 1 adjusted odds ratio, 0.77; 95% CI, 0.67-0.89). Higher hospital mechanical ventilation volume was weakly correlated with higher hospital risk-adjusted mortality rates (ρ = 0.16; p = 0.008). These moderately strong observations were supported by multiple sensitivity analyses. Conclusions Contrary to previous studies, we observed worse patient outcomes at higher mechanical ventilation volume hospitals. In the setting of increasing use of mechanical ventilation and changes in mechanical ventilation practices, multiple mechanisms of worse outcomes including resource strain are possible. Future studies investigating differences in processes of care between high and low volume hospitals are necessary.

Background: Women who suffer an out-of-hospital cardiac arrest receive bystander cardiopulmonary resuscitation (CPR) less often than men. Understanding public perceptions of why this occurs is a necessary first step toward equitable application of this potentially life-saving intervention. Methods: We conducted a national survey of members of the public using Mechanical Turk, Amazon’s crowdsourcing platform, to determine reasons why women might receive bystander CPR less often than men. Eligible participants were adults (≥18 years) located in the United States. Responses were excluded if the participant was not able to define CPR correctly. Participants were asked to answer the following free-text question: “Do you have any ideas on why women may be less likely to receive CPR than men when they collapse in public?” Descriptive statistics were used to define the cohort. The free-text response was coded using open coding, and major themes were identified via classical content analysis. Results: In total, 548 subjects were surveyed. Mean age was 38.8 years, and 49.8% were female. Participants were geographically distributed as follows: 18.5% West, 9.2% Southwest, 22.0% Midwest, 27.5% Southeast, and 22.9% Northeast. After analysis, 3 major themes were detected for why the public perceives that women receive less bystander CPR. They include the following: (1) sexualization of women’s bodies; (2) women are weak and frail and therefore prone to injury; and (3) misperceptions about women in acute medical distress. Overall, 41.9% (227) were trained in CPR while 4.4% reported having provided CPR in a medical emergency. Conclusions: Members of the general public perceive fears about inappropriate touching, accusations of sexual assault, and fear of causing injury as inhibiting bystander CPR for women. Educational and policy efforts to address these perceptions may reduce the sex differences in the application of bystander CPR.

Background The left ventricular assist device (LVAD) has become a common medical option for patients with end-stage heart failure. Although patients’ chances of survival may increase with an LVAD compared with medical therapy, the LVAD poses many risks and requires major lifestyle changes, thus making it a complex medical decision. Our prior work found that a decision aid for LVADs significantly increased decision quality for both patients and caregivers and was successfully implemented at 6 LVAD programs. Methods In follow-up, we are conducting a nationwide dissemination and implementation project, with the goal of implementing the decision aid at as many of the 176 LVAD programs in the United States as possible. Guided by the Theory of Diffusion of Innovations, the project consists of 4 phases: (1) building a network; (2) promoting adoption; (3) supporting implementation; and (4) encouraging maintenance. Developing an LVAD network of contacts occurs by using a national baseline survey of LVAD clinicians, existing professional relationships, and an internet-based strategy. A suite of resources targeted to promote adoption and support implementation of the decision aid into standard LVAD education processes are provided to the network. Evaluation is guided by the Reach, Effectiveness, Adoption, Implementation, Maintenance framework, where clinician and patient surveys and qualitative interviews determine the reach, effectiveness, adoption, implementation, and maintenance achieved. Conclusions This project is a true dissemination study in that it targets the entire population of LVAD programs in the United States and is unique in its use of social marketing principles to promote adoption and implementation. The implementation plan is intended to serve as a test case and model for dissemination and implementation of other evidence-based decision support aids and strategies.

Introduction: Women who suffer an out of hospital cardiac arrest receive bystander cardiopulmonary resuscitation (bCPR) less often than men. We sought to determine if there were differences in potential deterrents to providing CPR if the rescuer was a man or a woman. Methods: We surveyed participants via Amazon’s Mechanical Turk, a national crowdsourcing platform, to query why women receive less bCPR than men based on the sex of the rescuer. We asked participants to rank five themes previously identified. Eligible participants were ≥18 years, US residents, and correctly defined CPR. Participants were asked to rank the 5 following themes if the sex of the rescuer was unidentified sex, male, and female: 1) Rescuers are afraid to injure or hurt women; 2) Rescuers might have a misconception that women don’t suffer cardiac arrest; 3) Rescuers are afraid to be accused of sexual assault or sexual harassment; 4) Rescuers have a fear of touching women or that the touch might be inappropriate; 5) Rescuers think that women are “faking it” or being “overdramatic.” Results: In total, 576 participants were surveyed, and 520 responses were formally analyzed. The respondents were 42.3% female, 74.2% Caucasian, 10.4% African American, and 6.7% Hispanic. To determine a “consensus” ranking, a statistical model that finds the mode of the rankings was used, generating separate results for each of the categories of rescuer. This method determined that the modal ranking for respondents asked about a female rescuer was Hurt/Injure, Touch, Overdramatic, Misconception, Sexual Assault/Harassment. By contrast, when respondents were asked about a male rescuer, the modal ranking was found to be Touch, Sexual Assault/Harassment, Hurt/Injure, Misconception, Overdramatic. When the sex of the rescuer was not identified, the modal ranking was identical to that for the male rescuer question. Conclusion: When querying the public as to why women receive less-bystander CPR than men, there were differences in response based on the sex of the rescuer. Participants reported that a male rescuer would potentially be hindered by fears of accusation of sexual assault/harassment or inappropriate touch, while female rescuers would be more deterred due to fears of causing physical injury or harm.

Background: Home-based cardiac rehabilitation (CR) has similar efficacy as center-based CR, but the choice of which meets the needs of individual patients is preference-sensitive. Our objective was to develop a knowledge measure to be used to evaluate a shared decision-making tool for patients choosing between home and center-based CR. Methods: We generated 11 true/false questions about home and hospital-based CR. The statements were reviewed for accuracy by 8 exercise physiologists. Cognitive testing was performed with 10 patients using the “think-aloud” method to understand their interpretation of what each item was asking. The statements were then revised to improve acceptability and clarity. We tested the knowledge statements in a sample of 124 participates from the lay public recruited via mTurk. Psychometric properties of item difficulty, item uncertainty, and index of discrimination were evaluated. Differences between groups based on education level, age, sex, and race/ethnicity were also evaluated. Results: Of 124 respondents 66% were female, 69% were white, 69% were between 18-44 years of age, and 89% had at least some college education. On average respondents answered 70% of questions correctly. Item difficulty ranged from 51% to 98% correct. Item uncertainty ranged from 9% to 36%. Index of discrimination was highest for questions 2 (75%), 7 (74%) and 9 (68%). (see Table) Within each subgroup, the following groups had the highest average score: African Americans, (77%), females (74%), advanced degree (80%) and ages 55-64 (78%). Conclusion: The knowledge measure developed in this study can be used to assesses knowledge about key concepts central to making an informed decision about home vs. hospital-based CR. This knowledge measure will be further validated and used to evaluate a decision aid for patients in our safety net hospital system choosing between home and hospital-based CR.

Background: Decision aids frequently focus on decisions that are preference-sensitive due to an absence of superior medical option or qualitative differences in treatments. Out of pocket cost can also make decisions preference-sensitive. However, cost is infrequently discussed with patients, and cost has not typically been considered in developing approaches to shared decision-making or decision aids. Determining a therapy’s value to a patient requires an individualized assessment of both benefits and cost. A decision aid addressing cost for sacubitril-valsartan in heart failure with reduced ejection fraction (HFrEF) was developed because this medication has clear medical benefits but can entail appreciable out-of-pocket cost. Objective: To explore patients’ perspectives on a decision aid for sacubitril-valsartan in HFrEF. Methods: Twenty adults, ages 32-73, with HFrEF who met general eligibility for sacubitril-valsartan were recruited from outpatient HF clinics and inpatient services at 2 geographically-distinct academic health systems. In-depth interviews were conducted by trained interviewers using a semi-structured guide after patients reviewed the decision aid. Interviews were audio-recorded and transcribed; qualitative descriptive analysis was conducted using a template analytic method. Results: Participants confirmed that cost was relevant to this decision and that cost discussions with clinicians are infrequent but welcomed. Participants cited multiple ways that this decision aid could be helpful beyond informing a choice; these included serving as a conversation starter, helping inform questions, and serving as a reference later. The decision aid seemed balanced; several participants felt that it was promotional, while others wanted a more “positive” presentation. Participants valued the display of benefits of sacubitril-valsartan but had variable views about how to apply data to themselves and heterogenous interpretations of a 3% absolute reduction in mortality over 2 years. None felt this benefit was overwhelming; about half felt it was very small. The decision aid incorporated a novel “gist statement” to contextualize benefits and counter tendencies to dismiss this mortality reduction as trivial. Several participants liked this statement; few had strong impressions. Conclusion: Out of pocket cost should be part of shared decision-making. These data suggest patients are receptive to inclusion of cost in decision aids and that a “middle ground” between being promotional and negative may exist. The data, however, raise concerns regarding potential dismissal of clinically meaningful benefits and illustrate challenges identifying appropriate contextualizing language. The impact of various framings warrants further study, as does integration of decision aids with patient-specific out-of-pocket cost information during clinical encounters.

Background: In 2018, CMS required shared decision-making (SDM) with a decision (DA) prior to implantation of a primary prevention cardioverter defibrillator (ICD). Little is known about how DAs should be incorporated, but the implementation strategy may affect the process. Providing DAs prior to the SDM visit may facilitate informed discussion. However, this requires identifying ICD candidates ahead of time which may be logistically challenging. Providing the DA during the office visit requires less administrative effort but may reduce the impact of the DA. Objective: To evaluate the impact of DA timing on SDM outcomes. Methods: Patients referred for ICD implantation were block randomized across 3 clinics to receive the DA 30 minutes prior to, or at the end of the SDM visit. Patients were surveyed on implant day in several SDM domains including knowledge about ICDs, decisional conflict, values-choice concordance and the extent to which patients felt engaged in the decision-making process. Patients who chose not to have an ICD implanted after the SDM visit were surveyed by mail. Implanting physicians were also surveyed to assess perceptions about the impact of the DA. Results: Of 42 randomized patients, 24 completed the survey with 9 who received the DA before and 15 after the SDM visit. Three chose not to have an ICD implanted: 1 received the DA before and 2 after the visit. Though overall knowledge about ICDs was similar between groups (Table), every patient who received the DA before the encounter understood the primary purpose of the ICD, compared with 10/15 who received the DA after the visit. Receiving the DA earlier showed a numerically higher rate of understanding the risk of inappropriate ICD shocks. No significant differences were observed in decisional conflict, values-choice concordance, or reported patient engagement in decision-making. Conclusion: Patients who received a DA prior to the visit had numerically, but not significantly, higher rates of understanding the purpose of the ICD and risk of inappropriate shocks. These pilot data suggest that efforts to provide DAs ahead of time may strengthen SDM interaction and that an implementation strategy is critical to study. Important knowledge gaps remain in both groups, suggesting opportunities to improve SDM for ICDs.

Background: The decision to pursue a left ventricular assist device (LVAD) commits loved ones to major caregiving responsibilities and, often, medical decision-making. How emotional domains overlap within patients and their caregivers and contribute to conflict around the decision to pursue LVAD remains largely unexplored. Methods and Results: The associations within and between individuals in patient-caregiver dyads considering LVAD were estimated in a specific type of structural equation model known as the Actor-Partner Interdependence Model. This model tested whether each person’s depression and stress predicted their own decisional conflict (actor effects), as well as their partner’s decisional conflict (partner effects). At the time of study enrollment when a formal LVAD evaluation was initiated, 162 patient-caregiver dyads completed assessments of decisional conflict using the Decisional Conflict Scale, depressive symptoms using the Patient Health Questionnaire-2, and stress using the Perceived Stress Scale. Across both models, decisional conflict was significantly correlated within patient-caregiver dyads (β=0.47 and 0.44, for depression and perceived stress models, respectively, P P< 0.05) and caregiver (β=0.28; P< 0.001) was significantly related to greater decisional conflict (both actor effects). Greater patient depressive symptoms were related to greater patient decisional conflict (β=0.16; P< 0.05), whereas caregiver depression symptoms was not related to their own decisional conflict (β=0.07; P =0.37). There were no partner effects identified between decisional conflict and perceived stress or depressive symptoms. Conclusions: Patient and caregiver conflict over the decision to pursue an LVAD was highly correlated in this sample, with greater perceived stress significantly predicting greater decisional conflict in both patients and caregivers. Depressive symptoms in patients also predicted greater patient decisional conflict. No partner effects were identified in predicting decisional conflict. These results contribute to a larger body of work acknowledging the importance of patient-caregiver well-being in serious illness. Registration: URL: https://www.clinicaltrials.gov ; Unique identifier: NCT02344576.

Background: Conversations about goals of care and cardiopulmonary resuscitation (CPR)/intubation for patients with advanced heart failure can be difficult. This study examined the impact of a video decision support tool and patient checklist on advance care planning for patients with heart failure. Methods: This was a multisite, randomized, controlled trial of a video-assisted intervention and advance care planning checklist versus a verbal description in 246 patients ≥64 years of age with heart failure and an estimated likelihood of death of >50% within 2 years. Intervention participants received a verbal description for goals of care (life-prolonging care, limited care, and comfort care) and CPR/intubation plus a 6-minute video depicting the 3 levels of care, CPR/intubation, and an advance care planning checklist. Control subjects received only the verbal description. The primary analysis compared the proportion of patients preferring comfort care between study arms immediately after the intervention. Secondary outcomes were CPR/intubation preferences and knowledge (6-item test; range, 0–6) after intervention. Results: In the intervention group, 27 (22%) chose life-prolonging care, 31 (25%) chose limited care, 63 (51%) selected comfort care, and 2 (2%) were uncertain. In the control group, 50 (41%) chose life-prolonging care, 27 (22%) selected limited care, 37 (30%) chose comfort care, and 8 (7%) were uncertain ( P P P P Conclusions: Patients with heart failure who viewed a video were more informed, more likely to select a focus on comfort, and less likely to desire CPR/intubation compared with patients receiving verbal information only. Clinical Trial Registration: URL: http://www.clinicaltrials.gov . Unique identifier: NCT01589120.

Introduction: Women who suffer an out of hospital cardiac arrest have been observed to receive less bystander cardiopulmonary resuscitation (CPR) than men. Potential reasons for why women receive less bystander CPR than men are largely unknown. Methods: Mechanical Turk (MTurk), Amazon’s crowdsourcing platform, was used to pilot a national survey asking participants why they believe women receive less bystander CPR than men. Eligible participants were adults (18 years or over) located in the US. Participants were reimbursed $1 for their participation. To ensure adequate knowledge on the subject, survey responses were excluded if they incorrectly defined CPR. Participant demographics as well as familiarity with CPR were queried. Participants were asked to answer the following free-text question “Do you have any ideas on why women may be less likely to receive CPR than men when they collapse in public?” Descriptive statistics were used to define the cohort. The free text response was coded using thematic analysis and major themes were identified via classical content analysis. Results: Within 55 minutes of deploying the pilot survey, 54 individuals responded. All respondents answered the knowledge question correctly, and none were excluded. Mean age was 36.9 ±9.6 years and 38.9% were female. Participants were geographically distributed as follows: 13% West, 13% Southwest, 16.7% Midwest, 27.8% Southeast, 29.6% Northeast. Predominant themes identified for why women might receive less bystander CPR than men are identified in Table 1. Within this cohort, 27.8% were trained in CPR, and only 5.6% of respondents had actually performed CPR on a person. Conclusions: In this pilot survey, public perceptions identified social norms regarding fear of inappropriate touching and hurting women as significant contributors to reasons for why women receive less bystander CPR than men. Additional work using a larger national sample to confirm and expand on these findings is ongoing.

Objective: To offer patients a left ventricular assist device (LVAD), programs complete a formal evaluation of the patient’s eligibility. While basic components of the evaluation are mandated by Centers for Medicare and Medicaid Services, the full process has never been systematically compared across sites. Methods: We conducted semi-structured interviews with multiple team members at 6 diverse LVAD programs. The interviews were audio recorded, transcribed, inductively coded, and analyzed with a team-based approach. Results: We interviewed 31 participants: 9 cardiologists, 3 surgeons, 3 nurse practitioners, 9 nurse coordinators, and 7 social workers (a total of 4-7 participants at each program). The formal LVAD evaluation process consisted of 3 main components: the medical/psychosocial evaluation to determine patient eligibility, educating the patient about the LVAD, and the multidisciplinary committee meeting to formally decide patients’ eligibility. While the basic tenants of the processes were similar across programs, 4 major differences emerged: (1) Standardization: some programs had a formal prescriptive pattern for how the process unfolded, such as order sets and timing of specific assessments, while others appeared to operate more sporadically; (2) Timing: some programs conducted patient education before the team’s decision on LVAD eligibility to assess patients’ interest in an LVAD as part of the final decision, whereas others did it after the committee meeting to prevent “false hopes” and wasted personnel time; (3) Location: programs conducted the LVAD evaluation process primarily inpatient following decompensation, or in both inpatient and outpatient settings which resulted in evaluating some patients earlier in the disease progression; (4) Personnel: some programs included certain team members’ assessments—particularly palliative care and social work—as integral in the eligibility decision, whereas other programs saw such input as peripheral. These differences affected how the medical teams and patients made decisions. The environment, attitude, speed, and personalities of the program shaped the way decisions were presented and made. Despite the variability, all programs reported similar challenges due to the complex patient population and the intricate relationships within the multidisciplinary teams. Overall, all programs expressed a universal goal of striving to implant the “appropriate patient”. Conclusion: Despite similar medical challenges and team structure, large variability was observed across LVAD programs, affecting how medical teams and patients made decisions. Standardization of the process at a higher level and communication between programs may help identify best practices and keep programs consistent. In turn, this could lead to better internal communication and education processes and ultimately improve patient care.

Introduction: The DECIDE-LVAD Trial demonstrated the benefit of a decision support tool for patients considering destination-therapy left ventricular assist device (DT LVAD) implantation. We hypothesized that patients with low health literacy or numeracy may have benefited most from the intervention. Methods: We used the Rapid Estimate of Adult Literacy in Medicine (REALM-R) and the Subjective Numeracy Scale (SNS) to assess patients’ health literacy and numeracy, respectively. A REALM-R score of six or less out of eight identified patients at risk for poor literacy based on the original measure validation. An SNS score less than four out of six identified patients with poor subjective numeracy based on the mean score of the DECIDE-LVAD cohort. We assessed the effect of the decision support tool on LVAD knowledge and values-treatment concordance—concordance between patients’ stated values and their treatment outcome of LVAD or continued medical therapy—and their interaction with health literacy and numeracy. This interaction was assessed using linear mixed models for LVAD knowledge and the difference in Kendall’s tau correlation coefficient for values-treatment concordance. Results: Of the 248 DECIDE-LVAD patients, 228 with complete literacy and numeracy data were analyzed: 51% (116) had high literacy and numeracy; 18 (8%) had low literacy and high numeracy; 55 (25%) had high literacy and low numeracy; 39 (17%) had low scores for both measures. Average age was 63, 15% were female, 19% were racial/ethnic minorities. Patients with high scores for both measures were older, had more formal education, and higher total household income compared to the other 3 groups. Patients with low literacy and/or numeracy had significantly lower LVAD knowledge scores at baseline. In all groups, LVAD knowledge improved over time. The difference in LVAD knowledge between those with low literacy and high literacy decreased over time (baseline difference 9.4%, p=0.002; 6 month follow-up difference 1.4%, p=0.65). In those with high literacy, the decision support tool intervention increased the LVAD knowledge score by 4.2% relative to the control (p=0.15), while in those with low literacy, the intervention increased the score by 10.6% (p=0.04). For patients with low literacy, values-treatment concordance improved with use of the decision support tool (control vs. intervention tau: 0.234 vs 0.673, p=0.028). We did not observe differences in the effect of the intervention by participant numeracy score. Conclusion: All patient groups in the DECIDE-LVAD cohort of patients considering DT LVAD had improved LVAD knowledge with the use of the decision support tool. We did not observe a differential effect of the intervention by numeracy score. Compared to those with higher health literacy, patients with low health literacy improved their LVAD knowledge and values-treatment concordance after the intervention.

Rates of mortality and readmission, both within 30 days of an admission with an acute myocardial infarction (AMI), are key measures of hospital performance. A recent report demonstrated that Veterans Administration (VA) hospitals had lower AMI mortality but higher readmission rates at 30 days compared with Medicare fee for service hospitals from 2010 to 2013.1 Although this information provides an overall assessment of the quality of care provided, it is also important to understand facility-level and temporal variations of these performance metrics to inform ongoing quality improvement efforts. Accordingly, we sought to characterize contemporary facility-level variations (ie, variation across hospitals not explained by variation in patient risk) in 30-day risk-standardized mortality rates (RSMRs) and 30-day risk-standardized readmission rates (RSRRs) across the VA, to identify underperforming or overperforming sites, and to assess temporal variations in these metrics. Data from the VA External Peer Review Program, in which trained staff abstracted clinical data from comprehensive chart reviews, were linked with the VA Corporate Data Warehouse—a source of inpatient and outpatient administrative data inclusive of vital status. Patients who were admitted to a VA hospital from January 1, 2011, to February 28, 2014, and assigned an International Classification of Diseases, Ninth Revision: Clinical Modification diagnosis code of 410.xx irrespective of age were included. Those transferred into the VA system were excluded. If a patient had multiple AMIs in the study time period, 1 AMI was randomly chosen for inclusion in the study. Outcome measures of interest were 30-day all-cause mortality and 30-day unplanned, all-cause readmission. The latter included VA and non-VA hospital readmissions for which the VA was billed. Hospitals with

Background: Therapy for aortic stenosis (AS) is quickly evolving, with treatment options expanded by transcatheter aortic valve replacement (TAVR). The complexity of information patients need to make value-concordant decisions highlights the need for accessible, acceptable, and unbiased decision aids (DAs) for patients considering AS treatment. Methods: Using a rapid-development process adapted from our team’s earlier work creating DAs for ICD and LVAD candidates, and guided by International Patient Decision Aid Standards (IPDAS), we created decision support materials for AS patients. This process included simultaneous 1) qualitative assessments of decision support needs & experience among TAVR recipients, 2) alpha testing iterative versions of paper DAs with patients to assess for accessibility & bias, and 3) assessment of clinical accuracy and usability of DAs with clinicians through individual feedback and expert panel consensus (Figure 1). Results: Over a 14 month period, we created two paper and two video DAs (corresponding to high or non-operative surgical risk), including input from interviews with 17 patients and 3 caregivers, 6 clinician reviews, and 4 expert panel assessments. Patient/caregiver feedback included DA usability and when it should be introduced into the clinical process. Clinician feedback focused on expected valve durability, procedural risks, and clinical accuracy. While most patients and clinicians expressed enthusiasm about TAVR, they described subpopulations of AS patients for whom the decision of whether to accept TAVR should be weighed within the context of clinical uncertainty about expected benefits (i.e. patients with prohibitive surgical risk and multi-comorbid conditions) or valve durability (i.e. surgery candidates). The DAs are currently available on the American College of Cardiology’s patient-facing CardioSmart website. Conclusion: AS treatment options are technically complex and have patient-centered trade-offs. Developing and adapting patient decision aids for AS can improve the decision making process. This development process offers lessons for improving shared decision making for evolving therapies for other life-threatening disease.

Since their initial clinical demonstration in 1980, implantable cardioverter–defibrillators (ICDs) have prolonged countless lives with successful treatment of sudden cardiac arrest.1 No other therapy has proved as effective in preventing death from ventricular arrhythmias, and important advances in ICD technology continue to improve outcomes for well-selected patients.2 Although indicated for a wide range of inherited and acquired conditions,3 ICDs are predominantly placed in older patients with left ventricular systolic dysfunction and either previous myocardial infarction or congestive heart failure.4 In the United States alone, >50 000 ICDs are placed annually in patients aged > 65 years, and nearly 500 000 more may meet current guidelines for device implantation.5 However, decision making for older patients considering ICD implantation is particularly challenging. Subjects in the landmark trials had average ages in the 60s, and thus the survival benefits of ICDs in older age groups is less well-established.6 In addition, compared with the younger participants in most clinical trials, older adults have a lower ratio of arrhythmic death to nonarrhythmic death because of competing risks for mortality, resulting in a potentially lower absolute risk reduction. At the same time, living and eventually dying with an ICD introduces potential risks, including a lower quality of life (QoL), hospitalizations, and potential suffering at the end of life.7 A rigorous consideration of the benefits, risks, and ongoing care surrounding ICD use in older patients is long overdue. On April 22, 2014, we convened a conference of multidisciplinary experts in cardiac electrophysiology, heart failure, geriatrics, ethics, and palliative care in Boston, supported by the Hartford Change AGEnts and Paul B. Beeson Career Development Award programs, and the Hebrew SeniorLife Institute for Aging Research. The objectives of the conference were (1) to review what is currently known about ICD use in …

Background Little is known about facility‐level variation in the use of revascularization procedures for the management of stable obstructive coronary artery disease. Furthermore, it is unknown if variation in the use of coronary revascularization is associated with use of other cardiovascular procedures. Methods and Results We evaluated all elective coronary angiograms performed in the Veterans Affairs system between September 1, 2007, and December 31, 2011, using the Clinical Assessment and Reporting Tool and identified patients with obstructive coronary artery disease. Patients were considered managed with revascularization if they received percutaneous coronary intervention (PCI) or coronary artery bypass grafting within 30 days of diagnosis. We calculated risk‐adjusted facility‐level rates of overall revascularization, PCI , and coronary artery bypass grafting. In addition, we determined the association between facility‐level rates of revascularization and post‐ PCI stress testing. Among 15 650 patients at 51 Veterans Affairs sites who met inclusion criteria, the median rate of revascularization was 59.6% (interquartile range, 55.7%–66.7%). Across all facilities, risk‐adjusted rates of overall revascularization varied from 41.5% to 88.1%, rate of PCI varied from 23.2% to 80.6%, and rate of coronary artery bypass graftingvariedfrom 7.5% to 36.5%. Of 6179 patients who underwent elective PCI , the median rate of stress testing in the 2 years after PCI was 33.7% (interquartile range, 30.7%–47.1%). There was no evidence of correlation between facility‐level rate of revascularization and follow‐up stress testing. Conclusions Within the Veterans Affairs system, we observed large facility‐level variation in rates of revascularization for obstructive coronary artery disease, with variation driven primarily by PCI . There was no association between facility‐level use of revascularization and follow‐up stress testing, suggesting use rates are specific to a particular procedure and not a marker of overall facility‐level use.

Background: Little contemporary data about the performance of Veterans Affairs (VA) hospitals related to mortality and readmission rates after an acute myocardial infarction (MI) are available. Accordingly, we sought to characterize the rates of in-hospital and 30-day mortality and 30-day unplanned readmission after an acute MI as well as associated site-level variation. Methods: Using data from the External Peer Review Program, which abstracts data from the records of all patients admitted with an acute MI, linked with administrative data from the Corporate Data Warehouse, we performed an observational analysis of patients admitted with an acute MI from January 1, 2011, to February 28, 2014. Results: A total of 16,024 patients were admitted with an acute MI; 806 (5.0%) patients died during hospitalization, 1299 (8.1%) died within 30 days of admission, and 2529 (16.9%) had an unplanned hospital readmission. The annual risk-standardized in-hospital mortality rate (Hazard Ratio (HR) 0.90, 95% Credible Interval (CI) 0.83-0.98) and the 30-day mortality rate (HR 0.94, 95% CI 0.88-1.00) but not the unplanned readmission rate (HR 1.00, 95% CI 0.96-1.04) decreased over time ( Figure ). Individual hospital rates for in-hospital mortality, 30-day mortality, and 30-day unplanned readmission were comparable to the system-wide rates, with little variation between hospitals. Conclusions: In Veterans Affairs hospitals from 2011 to 2014, in-hospital and 30-day mortality but not 30-day unplanned readmissions rates declined over time. Little site-level variation in mortality or readmission rates was observed.

Background— Left ventricular assist devices (LVADs) are being used with increasing frequency to treat severe heart failure. Patients seek out informational resources when considering implantation. The primary study objective was to characterize the scope and quality of available LVAD educational materials. Methods and Results— In July 2013, we performed a cross-sectional search of Internet, print, and multimedia resources available to patients considering LVAD. Written materials Conclusions— Although many resources exist for patients considering an LVAD, the content is suboptimal. Benefits of LVADs are often presented in the absence of risks, alternative options, and caregiver considerations. Most materials use outdated statistics, are above the reading level of average Americans, and are biased toward accepting LVAD therapy. There is no tool that would qualify as a formal decision aid.

Background: Destination therapy left ventricular assist devices (DT-LVADs) have become a treatment option for carefully selected patients with end-stage heart failure. Death is inevitable despite DT-LVAD, with 1-year mortality approximately 20% and median survival 5 years. However, end-of-life processes for LVAD patients vary significantly by institution, provider, and patient preference. Palliative care has played an increasing role in the care of this patient population, yet there remains little data on the most effective way to integrate palliative care and hospice in the DT-LVAD population. Therefore, we aimed to understand the end-of-life perspectives regarding LVADs among both cardiology and palliative care/hospice providers. Methods: Using internet-based, secure methods, we administered a 41-item survey via electronic mail to members of the American Academy of Hospice and Palliative Medicine, European Society of Cardiology-Heart Failure Association, the International Society for Heart and Lung Transplantation, and the Heart Failure Society of America to assess their perspectives on end-of-life care in patients with LVADs. Descriptive statistics were used to analyze data. Fisher’s exact test was used to compare categorical data. Results: From October to November 2011, there were a total of 440 respondents (palliative care/hospice=137; cardiology=303). Most were physicians (80%; n=320) and male (59%; n=232). The majority of providers in both groups viewed an LVAD as a life-sustaining treatment. The groups differed in their attitudes, beliefs, and comfort with end-of-life care in patients with an LVAD. Few palliative care/hospice providers believed a patient needed to be imminently dying to turn off an LVAD; whereas most cardiology providers noted patients should be imminently dying in order to consider LVAD deactivation (2% vs 60%; p= Conclusion: Cardiology providers and palliative care/hospice providers collectively have different perceptions on management of end of life in patients with an LVAD. Bridging the gaps between these two disciplines is a critical first step in creating a more cohesive approach to end-of-life care for these patients—one that honors autonomy but respects individual provider comfort levels.

The traditional model of hospice care provision is visit-centric and resource-intensive. Our research question emerged from a collaboration between a community-based hospice and academic researchers seeking to address real-world concerns in hospice service delivery. We sought to describe current and

Frailty is the aggregation of subclinical physiological insults across many organ systems resulting in a syndrome of heightened vulnerability in the face of stress. Measures of frailty are highly predictive of adverse outcomes in many medical and surgical populations but have never been formally applied to patient selection for destination therapy left ventricular assist device (LVAD). Patients with severe heart failure being considered for destination therapy LVAD often have advanced age or noncardiac morbidity that renders them ineligible for transplantation. At the same time, these patients should have reasonable life expectancy to adequately realize the benefits of LVAD. As such, destination therapy LVAD-eligible patients are in a precariously narrow state of health often marked by a high degree of frailty. However, distinguishing frailty that will reverse with LVAD therapy (LVAD-responsive frailty) from frailty that will not (LVAD-independent frailty) is challenging. In this review, we summarize existing tools for destination therapy LVAD patient selection, define the syndrome of frailty, propose a conceptual distinction between LVAD-responsive frailty and LVAD-independent frailty, extrapolate the existing frailty literature to destination therapy LVAD-eligible patients, and identify directions for future research, including systematic collection of preoperative gait speed in this patient population.

Background: For patients and their loved ones, decisions at the end-of-life in the setting of chronic progressive illness are among the most complex in medicine. Complicating these decisions are increasingly available, invasive, and potentially life-prolonging technologies. One such technology is the left ventricular assist device (LVAD). Understanding the experience of dying with an LVAD can guide efforts to minimize distress for patients and their caregivers. Objective: To synthesize caregivers’ perspectives about the caregiver and patient experience with care transitions at end-of-life with LVAD. Methods: We conducted semi-structured, in-depth interviews with bereaved caregivers of patients with LVADs previously cared for at the University of Colorado. We excluded caregivers if the patient’s death had occurred greater than 3 years prior to the interview date. Data were analyzed using a mixed inductive and deductive approach. Results: Between September and November 2014, 8 bereaved caregivers were interviewed. Interview durations ranged from 31-65 minutes (mean=40). The majority (n=5) were widows of the patients; other caregivers included 2 friends and a mother. Caregivers described three main themes that coalesced around feelings of confusion in those final days and weeks with their loved ones: 1) confusion about the process of death with an LVAD: “[my daughter] said ‘You know Mom, he probably can't die. Even though he wants to. Because everything is keeping him going’”; 2) confusion about the legal and ethically permissible care of patients approaching death with an LVAD: “They don't actually turn it off until certain signs aren't there, ‘cause as long as there’s a chance you know? It would be considered murder.”; 3) confusion about the fragmented integration of palliative and hospice care: “He was bleeding again. And I didn't know what to do. I didn't know if we could take him to the ER? And I really didn't understand palliative care, in its entirety.” Conclusions: Despite increasing use of LVADs in patients with advanced heart failure, bereaved caregivers of LVAD patients describe a high level of confusion at the end of life: about the nature of the death, about the medical decisions to be made, and about the support services provided. There remains a need to develop LVAD-specific support for caregivers, as well as hospice and palliative care programs, to manage complex patient care needs at the end-of-life.

Objectives: We aimed to summarize the current evidence on outcomes of continuous-flow left ventricular assist devices (CF LVAD). Background: Conveying the complex trade-offs of LVAD is challenging, and made more difficult by absence of an evidence summary for the full range of possible outcomes. This absence of accurate and easily accessible information from which to anchor risk-benefit communication leads to a potentially non-standardized and variable informed consent and decision-making process around LVADs that may be incomplete, confusing, or biased. Methods: PubMed and Cochrane Library were searched from January 2007-December 2013, supplemented with manual review. Three reviewers independently assessed each study for saliency regarding patient-centered outcomes. Data were summarized in tabular form. Overall study characteristics encouraged inclusion of all indications (destination therapy and bridge to transplant) and prevented meta-analysis. Results: The electronic search identified 465 abstracts, of which 50 met inclusion criteria; manual review added 2 articles in press and 3 focused on medical therapy. Evidence was generally of low-strength, with 10 industry-funded trials and registries, 10 multi-center reports, and the remainder single-center observational experiences. Estimated actuarial survival after CF LVAD ranged from 56-87% at 1-year, 43-84% at 2-years, and 47% at 4-years (see Table 1). Improvements in functional class and quality of life were reported, but missing data complicated interpretation. Adverse events were experienced by the majority of patients, but estimates for bleeding, stroke, infection, right heart failure, arrhythmias, and rehospitalizations varied greatly. Conclusion: The totality of data for CF LVADs show consistent improvements in survival and quality of life counterbalanced by a range of common complications. While this summary should provide a practical resource for health care provider-led discussions with patients, it highlights the critical need for high-quality patient-centered data collected with standard definitions.

BACKGROUND: Destination therapy left ventricular assist device (DT LVAD) is increasingly offered to patients with end-stage heart failure who are ineligible for heart transplantation. Implanting centers often require the identification of a dedicated caregiver prior to DT LVAD implantation; however, the caregiver experience surrounding this difficult decision is relatively unexplored. METHODS: Between October 2012 and July 2013, we conducted semi-structured, in-depth interviews of caregivers to understand their experiences with decision making for loved ones considering and living with DT LVADs. Data were analyzed using a mixed inductive and deductive approach. RESULTS: We interviewed 17 caregivers: 16 caregivers of patients who had received a DT LVAD and 1 caregiver of a patient who had declined a DT LVAD. At the time of the caregiver interview, 10 DT LVAD patients were living and 7 were deceased. The majority were women (n=16) of whom 12 were either spouses or widows of the patients. Median age of caregivers was 65 (range 35-79). Twelve caregivers reported spending more than 8 hours per week caring for their loved one, and 14 attended regular medical appointments. Throughout the interviews, caregivers reported that DT LVAD was a complex decision making process with many inherent tensions. The themes identified are broadly interpreted under three domains: 1) the stark decision context with tension between hopes and realities, “when we first started out¼we had hopes of a transplant¼but once the lung function was done, and the kidneys ¼there was pretty much nothing. There was no hope other than the LVAD”; 2) the challenging decision process and the tension between wanting their loved ones to live, “I said ‘Well, I'll tell you what. I didn't marry you to be a young widow” and wanting to respect their loved ones’ wishes, “My thoughts were this was his life and it was his choice”; and 3) the downstream decision outcome and the tension between gratitude, “I'm just thankful to have my dad here¼” and a feeling of burden, “I've never felt caregiver was my gift¼I tend to feel like I'm being imposed upon at times.” CONCLUSIONS: Despite the promise of significantly improved survival for some patients, DT LVAD has major implications for caregives as well as patients. Decision making surrounding DT LVAD requires education of both the patient and caregiver of potential stresses. Additionally, decision-making surrounding DT LVAD should seek to incorporate decision support for patients and caregivers. This should include a focus on caregiver burden and the tensions that caregivers may experience.

Patients with implantable cardioverter-defibrillators (ICDs) are burdened with frequent visits to their doctors. Current guidelines suggest that patients should be seen every three to six months to have their devices interrogated and to make adjustments.1 The majority of these visits do not result in programming or device changes.2 Given the growth in the number of patients receiving ICDs, the burden on clinics to meet these interrogation guidelines is increasing. The Lumos-T Safely RedUceS RouTine Office Device Follow-up (TRUST) trial, published in this issue of Circulation , reports the results of an intervention that could improve the quality of care for patients with ICDs by decreasing the number of ICD follow-up visits while simultaneously providing closer monitoring of the ICD.3 The Institute of Medicine has stated that quality health care is care that is safe, effective, patient-centered, timely, equitable, and efficient4; the TRUST trial should be both praised and criticized based on these quality domains. Article see p 325 The TRUST trial was a large, multi-center, randomized trial of 1339 patients designed to test a new home monitoring (HM) system against routine medical care for the ongoing surveillance of ICDs. The HM system evaluates a patient's ICD daily through a remote monitoring device that allows clinicians to intervene earlier if and when abnormalities are detected. As such, patients would then only have to have their ICDs interrogated in person once a year. The authors specified two a priori primary end points for their HM trial, one for efficacy and one for safety.5 The efficacy end point was to show that HM decreased the number of office-based ICD follow-up visits; the safety end point (appropriately powered to test noninferiority) was to show that the HM system did not increase death, stroke, or surgical interventions when compared …

Background: Patients offered left ventricular assist device as destination therapy (DT LVAD) are typically faced with the decision to undergo major surgery and live their remaining life dependent on mechanical circulatory support (MCS) or transition to end-of-life care. MCS coordinators are often the first point of contact and provide education and support to patients making this difficult decision. Methods: We conducted semi-structured, in-depth interviews with MCS coordinators in order to characterize the range of decision support and preparation offered to patients considering DT LVAD and to solicit input on how to optimize that process. Interviews took place from August 2012 to January 2013. All interviews were digitally recorded and data were analyzed using a directed content analysis approach. Results: Our sample included 20 MCS coordinators from different programs around the United States. The following primary themes emerged: 1) cardiothoracic surgeons or heart failure cardiologists were primarily responsible for presenting risks and benefits of DT LVAD whereas coordinators provided the majority of patient education regarding practical concerns and patient/caregiver responsibilities; 2) existing consents and industry material are too complicated or overly optimistic; 3) tension exists between creating accurate expectations of DT LVADs and providing clinical reassurance - “I don’t want to scare them away from a life-saving therapy either, so I try to paint a realistic picture but not so realistic that it scares them;” and 4) when asked to theoretically consider if they were offered DT LVAD, the majority of coordinators stated that it would be a difficult decision influenced by their own age, co-morbidities, and family dynamics - “I think it would really depend on where I was in my life at that point in time.” Conclusions: MCS coordinators are in a unique position to assist in decision making and preparation for patients eligible for DT LVADs. In order to improve this process, a multidisciplinary and iterative approach appears helpful in conveying the risks and benefits of DT LVAD. Consents and educational materials must be simplified, patient-centered, and free of bias. Patient needs and values should be defined up front to help tailor the process. The uncertainty of many MCS coordinators, who arguably best understand the totality of therapy, to theoretically pursue DT LVAD themselves highlights the difficult trade-offs and personalized nature of this decision.

Background: Patients vary in their desire to participate in medical decision-making (MDM), with some preferring passive roles and others preferring shared or autonomous roles. Yet little is known about the stability of patient preferences over time and whether patient preferences are aligned with how they actually experience the MDM process. We sought to determine the stability of MDM preferences for patients hospitalized with an AMI and assess whether there is concordance between the patient’s preference and their experience with care. Methods: In TRIUMPH, a 24-center, prospective US study of AMI patients, MDM preferences were assessed both at the time of hospitalization and one year later (n=2071). MDM preferences were assessed by the question, “Given the information about the risks and benefits of the treatment options, who should decide which treatment option should be selected? We categorized responses from a 5-item Likert scale into: passive (“doctor alone/mostly the doctor”), or shared/active (“doctor and you equally/mostly you or you alone”) and compared responses between baseline and 12-months following AMI. We assessed concordance between baseline MDM preferences with the patients’ perceived level of participation in MDM at 1 month with the question, “Who was responsible for making health decisions regarding the current treatment of your heart condition?” using the same 5-item Likert scale and categorization. Results: Over 2/3 of patients preferred shared/active MDM both at the time of their AMI (1446, 69.8%) and 1 year later (1411, 68.1%). However, individual preferences varied over time. Among patients with a baseline preference for shared/active MDM, 374 (25.9%) preferred passive participation 1 year later. Among patients preferring passive participation at the time of their AMI, 339 (54.2%) preferred a shared/active participatory role 1 year later. Comparing desired and perceived roles in MDM, only 54.5% of patients reported, at 1 month, an MDM process that was concordant with their baseline preferences. Among patients with a baseline preference for shared/active MDM, 48.3% reported experiencing a passive role in MDM 1 month following AMI. Among patients preferring a passive role at baseline, 39.3% reported experiencing a shared/active MDM process. Conclusion: Individual preferences for participation in MDM during and after AMI vary, with the majority preferring a shared/active role. These preferences change over time, highlighting the need for continual assessment. In the month following an AMI, half of patients experienced an MDM process that was not consistent with their stated preferences.

Background: Left ventricular assist device as destination therapy (DT LVAD) is an option for some transplant ineligible patients who are actively dying of heart failure. Essentially, patients are faced with the decision to undergo major surgery to implant a partial artificial heart or transition to end-of-life care. While LVADs can extend life, they are also associated with significant risks including infection, stroke, and caregiver burden. How patients make this decision is poorly understood. Methods: We performed semi-structured, in-depth interviews based on the Ottawa Decision Support Framework to understand patients’ decisional needs in accepting or declining DT LVAD. All patients who had DT LVAD in place and patients who declined DT LVAD at an academic medical center between October-December 2012 were interviewed. Interviews were audio-recorded and transcribed. Data were analyzed using a mixed inductive and deductive approach. Additionally, we measured decision regret using the validated, 5-item decision regret scale. Results: All 17 eligible patients were interviewed, 13 with DT LVADs and 4 who had declined. Their mean age was 68. Patients accepting DT LVADs often did not perceive a decision. “I had to do it if I wanted to exist anymore.” This perception appeared to come from a belief that choosing end-of-life medical care was not an option, “This [LVAD] was the only option I had..that or push up daisies...so I automatically took this.” They also noted that the risks of the LVAD were not that important as they had “nothing to lose.” Those who declined an LVAD stated they were not afraid of death, asserted that their life lived had meaning, and recognized the potential burdens to both themselves and their family, “There are worse things than death.” For both accepters and decliners, this was an emotionally and spiritually driven decision. Both groups felt highly involved and informed. They also endorsed little decision regret (mean 5/100 for acceptors, 0/100 for decliners). Conclusions: There is a fundamental difference in values surrounding death among patients who either accept or decline a DT LVAD. Decision support interventions around this complex medical decision need to consider patient values first before getting into more cognitive aspects of the decision making process.