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Background The use of mobile health (mHealth) technologies has dramatically increased in the past year. A critical component in the discussion about telehealth and mHealth technologies is the importance of integrating the voices of patients, caregivers, and their clinicians. Methods This study was performed at a tertiary center in Houston consisting of 7 hospitals (1 academic and 6 community hospitals). The clinically integrated mHealth technology consisted of a mHealth education and monitoring platform that used patient-centered emails and text messages over a 50-day period, from prior to the orthopaedic total joint replacement surgery to posthospital discharge to provide education and health monitoring at home. Study participants included patients who were scheduled for total joint replacement surgery between July 2018 and November 2019, and their caregivers. The study involved two components: (1) focus group study (n = 15); split into two groups of participants who had not used the mHealth technology (α-testing during the design phase, prior to implementation); and (2) a content analysis of 377 free-text comments from patients who used the mHealth technology, and who responded to questions about their use of the mHealth platform (β-testing; after implementation, during the execution phase). Thematic analyses methods were used. Results Three key themes emerged during the design phase including: (1) monitoring, bidirectional questions asking patients to respond to a question can feel invasive and/or annoying unless framed in a reciprocal, contextual-based way; (2) text messages should be used selectively for time-sensitive, critical information; and (3) information should be contained within the body of the message. Three themes emerged during the execution phase include: (1) the content should be divided into small, digestible chunks at the times that patients need that information; (2) the tone of the messages should be approachable and friendly, as opposed to detached and professional; and (3) mHealth technologies make patients calmer and more confident and less inclined to draw on hospital personnel, enabling patients to be managed by the automated program without escalating to human care. Limited, bidirectional engagement can foster interactivity and patient monitoring without becoming excessive or burdensome to health care professionals. Conclusion The use of mHealth for patient care is likely to be more effective and used in this multihospital mHealth technology study of patients undergoing orthopaedic surgery, if they are clinically integrated with staff who can respond to escalated problems as needed, to enable better adoption, uptake, and sustainability of technology.

This manuscript provides an overview of our efforts to implement an integrated electronic monitoring and feedback platform to increase patient engagement, improve care delivery and outcome of treatment, and alert care teams to deterioration in functioning. Patients First utilizes CareSense, a digital care navigation and data collection system, to integrate traditional patient-reported outcomes monitoring with novel biological monitoring between visits to provide patients and caregivers with real-time feedback on changes in symptoms such as stress, anxiety, and depression. The next stage of project development incorporates digital therapeutics (computerized therapeutic interventions) for patients, and video resources for primary care physicians and nurse practitioners who serve as the de facto front line for psychiatric care. Integration of the patient-reported outcomes monitoring with continuous biological monitoring, and digital supports is a novel application of existing technologies. Video resources pushed to care providers whose patients trigger a symptom severity alert is, to our knowledge, an industry first.

While there is an evolving literature on the benefits of texting and patient-centered technologies, texting initiatives have not focused on family members. We sought to identify patients’ family members’ perspectives on facilitators and barriers to using 1 digital texting innovation to promote family-centered care during patients’ hospitalizations. This qualitative study was conducted at a tertiary care center in Houston, consisting of 7 hospitals (1 academic hospital and 6 community hospitals), involving analyzation of 3137 comments from family members who used the digital texting technology. Thematic analysis methods were used. The data analysis for loved ones’ feedback resulted in 4 themes as facilitators: (1) inpatient text messaging keeps loved ones updated and connected (n = 611); (2) inpatient text messaging allows for stronger continuity of communication (n = 69); (3) messaging promotes a sense of staff compassion and service (n = 245); and (4) messaging reduces phone calls (n = 65). The data analysis resulted in 4 themes as barriers to text messaging helpfulness: (1) messages could feel generic (n = 31); (2) inpatient texting was not needed if all loved ones were regularly at bedside (n = 6); (3) messages could have a perceived delay (n = 37); and (4) security features could impact convenience (n = 29). Our findings indicate that family members and loved ones value inpatient text messages, not only for the information the messages provide, but also because the act of writing text messages and preparing loved ones shows inclusiveness, compassion, and family-centered care.

An important gap in the literature is how clinicians feel about patient-centered technologies and how clinicians experience patient-centered technologies in their workflows. Our goal was to identify clinician users’ perspectives on facilitators (pros) and barriers (cons) to using 1 digital texting innovation to promote family centered care during patients’ hospitalizations. This qualitative study was conducted at a tertiary care center in Houston, consisting of 7 hospitals (1 academic hospital and 6 community hospitals), involving analyzation of 3 focus groups of 18 physicians, 5 advanced practice providers, and 10 nurse directors and managers, as well as a content analysis of 156 real-time alerts signaling family dissatisfaction on the nursing unit/floor. Thematic analysis methods were used. We selected these participants by attending their regularly scheduled service-line meetings. Clinician feedback from focus groups resulted in 3 themes as facilitators: (a) texting platforms must be integrated within the electronic medical record; (b) texting reduces outgoing phone calls; (c) texting reduces incoming family phone calls. Clinician feedback resulted in 3 themes as barriers: (a) best practice alerts can be disruptive; (b) real-time alerts can create hopelessness; and (c) scale-up is challenging. The analyzation of facilitators (pros) and barriers (cons) pertains only to the clinician's feedback. We also analyzed real-time alerts signaling family dissatisfaction (defined as “service recovery escalation” throughout this manuscript). The most common selection for the source of family dissatisfaction, as reflected through the real-time alerts was, “I haven’t heard from physicians enough,” appearing in 52 out of 156 alerts (33%). The second most common selection for the source of dissatisfaction was “perceived inconsistent or incomplete information provided by team members,” which was selected in 48 cases (31%). Our findings indicate that clinicians value inpatient texting, not only for its ability to quickly relay updates to multiple family members with 1 click, but also because, when used intentionally and meaningfully, texting decreases family phone calls.

This manuscript provides an overview of our efforts to implement an integrated electronic monitoring and feedback platform to increase patient engagement, improve care delivery and outcome of treatment, and alert care teams to deterioration in functioning. Patients First utilizes CareSense, a digital care navigation and data collection system, to integrate traditional patient-reported outcomes monitoring with novel biological monitoring between visits to provide patients and caregivers with real-time feedback on changes in symptoms such as stress, anxiety, and depression. The next stage of project development incorporates digital therapeutics (computerized therapeutic interventions) for patients, and video resources for primary care physicians and nurse practitioners who serve as the de facto front line for psychiatric care. Integration of the patient-reported outcomes monitoring with continuous biological monitoring, and digital supports is a novel application of existing technologies. Video resources pushed to care providers whose patients trigger a symptom severity alert is, to our knowledge, an industry first.

BACKGROUND Despite the growth of and media hype about mobile health (mHealth), there is a paucity of literature supporting the effectiveness of widespread implementation of mHealth technologies. OBJECTIVE This study aimed to assess whether an innovative mHealth technology system with several overlapping purposes can impact (1) clinical outcomes (ie, readmission rates, revisit rates, and length of stay) and (2) patient-centered care outcomes (ie, patient engagement, patient experience, and patient satisfaction). METHODS We compared all patients (2059 patients) of participating orthopedic surgeons using mHealth technology with all patients of nonparticipating orthopedic surgeons (2554 patients). The analyses included Wilcoxon rank-sum tests, Kruskal-Wallis tests for continuous variables, and chi-square tests for categorical variables. Logistic regression models were performed on categorical outcomes and a gamma-distributed model for continuous variables. All models were adjusted for patient demographics and comorbidities. RESULTS The inpatient readmission rates for the nonparticipating group when compared with the participating group were higher and demonstrated higher odds ratios (ORs) for 30-day inpatient readmissions (nonparticipating group 106/2636, 4.02% and participating group 54/2048, 2.64%; OR 1.48, 95% CI 1.03 to 2.13; P=.04), 60-day inpatient readmissions (nonparticipating group 194/2636, 7.36% and participating group 85/2048, 4.15%; OR 1.79, 95% CI 1.32 to 2.39; PPPdo something, and they were most engaged with emails that did not require action, including informational content. A total of 96% (558/580) of patients indicated high satisfaction with using mHealth technology to support their care. Only 0.40% (75/2059) patients opted-out of the mHealth technology program after enrollment. CONCLUSIONS A novel, multicomponent, pathway-driven, patient-facing mHealth technology can positively impact patient outcomes and patient-reported experiences. These technologies can empower patients to play a more active and meaningful role in improving their outcomes. There is a deep need, however, for a better understanding of the interactions between patients, technology, and health care providers. Future research is needed to (1) help identify, address, and improve technology usability and effectiveness; (2) understand patient and provider attributes that support adoption, uptake, and sustainability; and (3) understand the factors that contribute to barriers of technology adoption and how best to overcome them.

Background Studies indicate that decision making and informed consent among patients considering left ventricular assist device (LVAD) support for advanced heart failure could be improved. In the VADDA (Ventricular Assist Device Decision Aid) trial, we tested a patient-centered decision aid (DA) to enhance the quality of decision making about LVAD therapy. Methods After an extensive user-centered design process, we conducted a multisite randomized trial of the DA compared with standard education (SE) among inpatients considering LVAD treatment for advanced heart failure The main outcome was LVAD knowledge at 1 week and 1 month after administration of the DA versus the SE, according to a validated scale. Secondary measures included prespecified quality decision making measures recommended by the International Patient Decision Aid Standards collaboration. Results Of 105 eligible patients, 98 consented and were randomly assigned to the DA and SE arms. Patients receiving the VADDA exhibited significantly greater LVAD knowledge than the SE group at 1 week of follow-up (P = .01) but not at 1 month (P = .47). No differences were found between DA and SE patients in rates of acceptance versus decline of LVAD treatment (85% vs 78%; P = .74). Recipients in the DA arm reported greater satisfaction with life after implantation compared with nonrecipients (28 vs 23 out of 30; P = .008), although both arms reported high satisfaction. Patients rated the DA high in acceptability and usability. Conclusions The VADDA enhances LVAD knowledge, particularly in the short term (1 week) during the peak period of decision making. The DA does not encourage decision direction and reflects patient, caregiver, and physician preferences for content and format. Clinical Trial Registration https://clinicaltrials.gov/ct2/show/NCT02248974 . The trial is registered with clinicaltrials.gov (NCT02248974).

Ethical, practical, and medical challenges affect decisions about left ventricular assist device (LVAD) implantation. The informed consent document (IC-Doc) is integral to the decision-making process and structures informed consent conversations. The objective of this study was to analyze IC-Docs to identify the information patients and their families receive about LVAD implantation to create a model IC-Doc. We requested IC-Doc for LVAD implantation from LVAD programs in the United States. We analyzed them in three areas: medical and technical content, patient knowledge gaps, and syntax. Nineteen IC-Docs representing all United Network of Organ Sharing regions were included. Seventeen (89.5%) mentioned the indications for LVAD implantation (bridge to transplant or destination therapy), and six indicated which category applied to the patient. Palliative care was mentioned as an alternative in nine (47.4%); no IC-Doc discussed nonsurgical palliative care. Eight forms (42.1%) specifically mentioned turning off the LVAD. Eighteen forms mention general bleeding, and four referred to long-term gastrointestinal bleeding. Two IC-Docs addressed driveline infections. One form was written at an 8th grade reading level. There is wide variation in LVAD IC-Docs and omission of some benefits and risks. We have written an IC-Doc that meets criteria for disclosure, fills many knowledge gaps, and has an acceptable readability score.

Combined thoracic organ and liver transplantation has been shown to be a viable treatment option for patients with end-stage disease lung or heart and disease. There are increasing number of cases reported in the literature, as the number of institutions utilizing this strategy is growing. Herein, we review the current literature of combined thoracic and liver transplantation.A larger number of combined heart or lung and liver transplants (CHLT and CLLT) are being performed. A recent literature search showed approximately 231 CHLT and 89 CLLT and being described. One-year patient survival ranged from 71 to 80% for CLLT and 80-93% for CHLT, respectively. Indications for combined transplant and disease-specific outcomes are still being evaluated. Additionally, salvage modalities such as extracorporeal membrane oxygenation and ex-vivo lung perfusion are also being described.Combined thoracic and liver transplant continues to be a viable treatment option for patients with end-stage disease that would likely not survive single transplant alone. Salvage modalities, such as extracorporeal membrane oxygenation and ex-vivo lung perfusion, may help in extending candidacy for this combined transplant. Outcomes, to date, are similar to results observed for solitary thoracic organ recipients, justifying CHLT and CLLT as a viable option for these patients. Continued identification of outcomes is needed to justify allocation of dual organs to a single recipient.

Left-ventricular assist device (LVAD) therapy is a growing mechanical circulatory support therapy used to treat patients with advanced heart failure. There is a general assumption among clinicians that patients would prefer to accept a heart to any other treatment were they eligible. However, little research has been done to clarify the nuances of patient treatment preferences for LVAD therapy versus transplantation. The objective of this study was to investigate this treatment preference assumption from patients' perspectives. In a single-site study, 15 LVAD patients, 15 LVAD candidates, 15 LVAD decliners, and 15 LVAD caregivers (n = 60) participated in structured, in-depth interviews to assess decisional processes and treatment preferences for advanced heart failure. The interview guides were consistent with the Ottawa framework on decision-making processes. All participants were identified by the LVAD coordination team and recruited consecutively between February and November 2014. The patient and candidate groups included both LVAD designations: destination therapy (n = 22), bridge-to-transplant (n = 4), as well as four participants who deferred designation pending worsening clinical status. The interviews were analyzed using qualitative description with constant comparisons, aided by ATLAS.ti. Although LVAD eligible patients generally show a preference for heart transplantation as the ideal treatment for heart failure, some patients begin to show ambivalence as they experience LVAD therapy and begin to prefer LVAD as a long-term, destination treatment. Some themes that emerged from the interviews concerning transplantation centered on the consequences of multiple major surgeries (i.e., LVAD placement followed by heart transplantation, n = 18), fears surrounding lifestyle changes of accepting a heart transplant (n = 14) and life satisfaction with an LVAD as a "new normal" (n = 18). Findings suggest that experience with an LVAD can sometimes cause ambivalence about transplant with some patients preferring LVAD as destination even when transplant is an option. We provide clinical and programmatic implications of this, concluding with practical recommendations for how to fully address patients' goals of treatment as their health and situation changes over time.

The medical care of children with life-threatening and life-limiting illness is a crucible containing many volatile issues and complicated circumstances that predictably provoke conflict between well-meaning people. This chapter will review the prototypical types of conflicts that occur in the practice of pediatric hematology/oncology and propose methods of managing these conflicts that hinge on established ethical principles and disciplined reasoning. We draw on the broader field of conflict management for an empirically grounded understanding of conflict and conflict resolution strategies.

In November 2018, the practice of health care ethics consultation crossed a major threshold when 138 candidates took the inaugural Healthcare Ethics Consultant Certification Examination. This accomplishment, long in the making, has had and continues to have both advocates and critics. The Healthcare Ethics Consultant Certification Commission, a functionally autonomous body created and funded by the American Society for Bioethics and Humanities, was charged with overseeing creation of the certification process, developing the exam, and formulating certification standards and policies to assess candidates' qualifications. In this essay, as members of the commission, we describe the process of developing, administering, and scoring the certification examination as well as the historical context and the outlook for certification. By detailing the decisions and actions of the commission, we aim to provide a transparent account of the commission's efforts to develop a psychometrically sound, reliable, and secure examination through a deliberative, fair, and data-driven process.

Objectives: Little is known about how clinicians perceive prognostic uncertainty. Our study objective was to identify factors that influence how prognostic uncertainty is viewed by physicians, as it relates to their communications with families. Design: Thirty semi-structured interviews with qualitative content analysis (9 surgeons, 16 intensivists, 3 nurse practitioners, and 2 “other” clinicians). We analyzed interviews using qualitative description with constant comparative techniques. Setting: Open medical, surgical, neurosurgical, and cardiovascular intensive care units (ICUs) in a 900-bed academic, tertiary Houston hospital. Interventions: None Main Results: We identified 2 main factors that influence how clinicians perceive prognostic uncertainty and their perceptions about whether and why they communicate prognostic uncertainties to families: (1) Communicating Uncertainty to “Soften the Blow”; and (2) Communicating Uncertainty in Response to Clinicians’ Interpretations of Surrogate Decision Makers’ Perceptions of Prognostic Uncertainty. We also identified several subthemes. Conclusions: Clinician–family interactions influence how clinicians perceive prognostic uncertainty in their communications with patients or families. We discuss ethical and clinical implications of our findings.

Developing a care plan in a critical care context can be challenging when the therapeutic alliance between clinicians and families is compromised by anger. When these cases occur, clinicians often turn to clinical ethics consultants to assist them with repairing this alliance before further damage can occur. This paper describes five different reasons family members may feel and express anger and offers concrete strategies for clinical ethics consultants to use when working with angry families acting as surrogate decision makers for critical care patients. We reviewed records of consults using thematic analysis between January 2015 and June 2016. Each case was coded to identify whether the case involved a negative encounter with an angry family. In our review, we selected 11 cases with at least one of the following concerns or reasons for anger: (1) perceived or actual medical error, (2) concerns about the medical team's competence, (3) miscommunication, (4) perceived conflict of interest or commitment, or (5) loss of control. To successfully implement these strategies, clinical ethics consultants, members of the medical team, and family members should share responsibility for creating a mutually respectful relationship.

Background A central tenet of patient-centered health care advocated by the Institute of Medicine and the American Medical Association is to enhance informed decision-making in a way that incorporates patient values, knowledge and beliefs. Achievement of this goal is constrained by a lack of validated measures of patients' knowledge needs. Methods In this study we present a comprehensive and valid methodology for developing a clinically informed and patient­centered measure of knowledge about left ventricular assist device (LVAD) therapy to facilitate discussion and measure candidate understanding of treatment options. Using structured interviews with patients, caregivers, candidates for LVAD treatment (New York Heart Association Class III and IV) and expert clinicians ( n = 71), we identified top patient decisional needs and perspectives on essential knowledge needs for informed decision-making. From this list, we generated 20 knowledge scale question items to refine in cognitive interviews ( n = 5) with patients and patient consultants. Results Good internal consistency and reliability of the knowledge scale (Cronbach's α = 0.81) was seen in 30 LVAD patients and candidates. Knowledge was higher among patients currently with LVADs than candidates, regardless of receiving standard education (with education: 69.9 vs 50.1, adjusted p = 0.02; without education: 69.9 vs 37.6, adjusted p Conclusion The LVAD knowledge scale may be useful in clinical settings to identify gaps in knowledge among patient candidates considering LVAD treatment, and to better tailor education and discussion with patients and their caregivers, and to enhance informed decision-making before treatment decisions are made.

There is little guidance on what clinicians should do when advance directives (or living wills, specifically) are challenged, particularly when surrogate decision-makers' interpretations of patients' wishes conflict with the living will. In our commentary, we make a controversial argument suggesting that overriding living wills can be ethically preferable to the alternative of strictly adhering to them. We propose four ethical considerations for determining whether it is ethically supportable to override living wills.

Despite the interpersonal nature of family meetings and the frequency in which they occur, the clinical ethics literature is devoid of any rich descriptions of what clinical ethicists should actually be doing during family meetings. Here, we propose a framework for describing and understanding "transitioning" facilitation skills based on a retrospective review of our internal documentation of 100 consecutive cases (June 01, 2013-December 31, 2014) wherein a clinical ethicist facilitated at least one family meeting. The internal documents were analyzed using qualitative methodologies, i.e., "codes", to identify emergent themes. We identified four different transitioning strategies clinical ethicists use to reach a meaningful resolution. These transitioning strategies serve as a jumping-off point for additional analyses, future research, evaluating clinical ethics consultation, and overall performance improvement of a consultation service.

The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work.

The peer reviewers of Part Two critically appraise and reflect on the clinical ethicist’s actions in “The Zadeh Scenario.” In what follows, I first outline four prominent methods for “doing” clinical ethics. For each I consider if, and how, the method may have been utilized in the peer reviews of Part Two. Where peer reviewers employ different methods within their analyses, or where they are unclear in their methods, I draw attention to it. Finally, I propose a method that I believe is a common thread in all of the peer reviewers’ assessments; I call this method “proceduralism,” a method that echoes narrative and pragmatism approaches while using procedural standards to orient the method.

Several studies describe the benefits of left ventricular assist device (LVAD) therapy for the “sickest of the sick” heart failure (HF) patients with INTERMACS (Interagency Registry for Mechanically Assisted Circulatory Support) profiles 1 to 3, for whom therapeutic options have been exhausted

Background— Social media have the potential to offer important benefits for patient education, support, and shared decision making. Despite the proliferation of social media use during the past decade, little is known about the scope and quality of available information, or the purposes that social media sites serve for patient decisional and support needs. Methods and Results— We conducted a mixed method study, including content analysis of social media and principal components analysis analysis of data sites discussing left ventricular assist device treatment for heart failure. This study explored aspects of interactivity, user-friendliness, appeal, medium, purpose, audience, and accuracy of information. Higher levels of interactivity (eg, posting comments) seem to enhance the appeal and usability of available information but also introduce greater potential for inaccuracy and inconsistency. The current lack of oversight into the content and quality of available information constitute a challenge for the reliable use of social media as forums for information-seeking and social network–based support. Conclusions— We conclude that social media outlets constitute a promising source of informational and psychosocial support for patients, caregivers, and candidates, and if used in conjunction with patient-provider dialog, can contribute to informed decision making by facilitating reflection and discussion of personal concerns, values, and informational needs.

Our study objectives were to determine the key sources of moral distress in diverse critical care professionals and how they manage it in the context of team-based models.Qualitative case study methodology using three recently resolved clinical cases.A medical and surgical adult ICU in a 900-bed academic, tertiary Houston hospital.Twenty-nine ICU team members of diverse professional backgrounds interviewed between March 2013 and July 2013.None.All members of the ICU team reported experiencing moral distress. Intrateam discordance served as a key source of distress for all healthcare disciplines. Interviewees identified two situations where intrateam discordance creates moral distress: 1) situations involving initiation or maintenance of nonbeneficial life-sustaining treatments and 2) situations involving a lack of full disclosure about interventions. Healthcare professionals engaged in a variety of management techniques, which can be grouped according to maladaptive behaviors (pas-de-deux, "fighting," and withdrawing) and constructive behaviors (venting, mentoring networks, and building team cohesion). Maladaptive behaviors were more common in the surgical ICU. Constructive behaviors were more prevalent in the medical ICU and typically used by nurses and ancillary staff members. Physicians report becoming detached as morally distressing cases unfold, whereas nurses report becoming more emotionally invested.This study identified the ways in which moral distress manifests across critical care disciplines in different ICU environments. Our results have potential implications for patient care. First, when clinicians alter the content of their goals-of-care conversations with patients or families to accommodate intrateam discordance (as part of the "pas-de-deux"), subsequent decisions regarding medical care may be compromised. Second, when different team members respond differently to the same case-with nurses becoming more emotionally invested and physicians becoming more withdrawn-communication gaps are likely to occur at critical moral distress junctures. Finally, our findings suggest that physicians and any healthcare professionals in surgical units might be susceptible to unmitigated moral distress because they report less engagement in constructive behaviors to recalibrate their distress.

There has been an ongoing appeal in the bioethics literature for a broader understanding and conceptual clarity of the phenomenon of moral distress. Several authors argue that greater conceptual cl...

It is about time our field made headway on evaluating clinical ethicists' consultative skills and activities. For years, evaluation efforts have been marred by inertia, controversy, and implementat...

A few weeks ago, Texas took an unprecedented position on unilateral DNRs by passing Senate Bill (SB) 11, which requires patient/surrogate consent for writing DNR orders. The motivation behind the bill was based on the drafters' beliefs that physicians frequently write unilateral DNR orders. SB 11, however, does not stop at requiring physicians to seek consent for DNR orders. Instead, the legislation uncharacteristically exceeds what is typically within the scope and role boundaries for lawmakers by legislating how physicians discuss and implement DNR orders. We contend that this bill is ethically problematic and will have far-reaching, negative consequences that will affect how critical care medicine is practiced. In what follows, we describe how proponents' arguments rely on several ethical assumptions, and we describe potential negative impacts stemming from this legislation. Finally, we offer an alternative approach that would mitigate proponents' concerns. We believe SB 11 and our analytic deconstruction of it should serve as "lessons learned" for other states considering similar legislation.

Background The heterogeneity with regard to findings on family meetings (or conferences) suggests a need to better understand factors that influence family meetings. While earlier studies have explored frequency or timing of family meetings, little is known about how factors (such as what is said during meetings, how it is said, and by whom) influence family meeting quality. Objectives: (1) To develop an evaluation tool to assess family meetings (Phase 1); (2) to identify factors that influence meeting quality by evaluating 34 family meetings (Phase 2). Materials and methods For Phase 1, methods included developing a framework, cognitive testing, and finalizing the evaluation tool. The tool consisted of Facilitator Characteristics (i.e., gender, experience, and specialty of the person leading the meeting), and 22 items across 6 Meeting Elements (i.e., Introductions, Information Exchanges, Decisions, Closings, Communication Styles, and Emotional Support) and sub-elements. For Phase 2, methods included training evaluators, assessing family meetings, and analyzing data. We used Spearman's rank-order correlations to calculate meeting quality. Qualitative techniques were used to analyze free-text. Results No Facilitator Characteristic had a significant correlation with meeting quality. Sub-elements related to communication style and emotional support most strongly correlated with high-quality family meetings, as well as whether “next steps” were outlined (89.66%) and whether “family understanding” was elicited (86.21%). We also found a significant and strong positive association between overall proportion scores and evaluators' ratings ( r s = 0.731, p Conclusions We filled a gap by developing an evaluation tool to assess family meetings, and we identified how what is said during meetings impacts quality.

Background— How caregivers contribute to positive or negative outcomes for left ventricular assist device (LVAD) patients remains unclear. Our primary study objectives were to (1) identify caregiver support attributes through a retrospective chart review of social workers’ psychosocial assessments for LVAD patients and (2) determine how these attributes associated with patients’ post-LVAD placement mortality and Interagency Registry for Mechanically Assisted Circulatory Support–defined morbidity events. Methods and Results— We retrospectively reviewed and recorded social workers’ clinical assessments of adult patients implanted with durable continuous-flow LVADs as bridge to transplant, destination therapy, or bridge to decision from January 2010 to December 2014. Associations between caregiver characteristics and patient mortality and morbidity events were analyzed using Kaplan–Meier curves and Cox proportional hazards regression. Patient follow-up time was calculated as the time from hospital discharge until the earliest among death with LVAD, transplant, or the last day of the study (December 31, 2015). Patients were censored for death with LVAD at the time of transplant or the last day of the study. A total of 96 LVAD recipients were included in this study. Having a caregiver who understands the severity of the illness and options available to the patient (as determined and documented by the social worker; P =0.01), a caregiver who has identified a backup plan ( P =0.02), and a caregiver who is able to provide logistical support ( P =0.04) significantly mitigated risk of death. The risk of death for an LVAD patient was also significantly lower among those who have at least 1 adult child who lives within 50 miles ( P =0.03) and those who have an extended family who can care for the patient ( P =0.03). The risk of death was 3.1× more likely among patients who live alone compared with those who do not live alone ( P =0.04). No caregiver characteristics were significantly associated with morbidity. Conclusions— This exploratory, hypothesis-generating study suggests that mortality after LVAD placement is impacted by caregiver understanding of patient severity of illness and caregiver presence. This study provides initial evidence to support further work in understanding the associations between caregivers and LVAD patients, as well as interventions that may improve patient outcomes. Clinical Trial Registration— URL: http://www.clinicaltrials.gov . Unique identifier: NCT02248974.

Background: Little has been written about models for clinical ethics consultation. By “model” we mean the way in which the engagement between the clinical ethics consultant, hospital staff, and other stakeholders is structured, with a key variable being the degree of integration with stakeholders within the institution or segments of the institution. We describe an innovative model of clinical ethics consultation, which we term “embedded ethics,” involving embedding clinical ethics consultants within clinical specialties and subspecialties based on institutional needs and areas of clinical ethicists’ expertise. Methods: The overarching methodology for this article is a case study, reporting our experience with an intervention that we evaluated using mixed methods. Results: Our results underscore the positive impact that an embedded ethics intervention can have on consultation volume and intensity, as well as clinical staff perceptions of an ethics consultation service (ECS). Conclusions: Our experience wi...

The use of mechanical circulatory support (MCS) devices has increased sixfold since 2006. Although there is an established legal and ethical consensus that patients have the right to withdraw and withhold life-sustaining interventions when burdens exceed benefits, this consensus arose prior to the widespread use of MCS technology and is not uniformly accepted in these cases. There are unique ethical and clinical considerations regarding MCS deactivation. Our center recently encountered the challenge of an awake and functionally improving patient with a total artificial heart (TAH) who requested its deactivation. We present a narrative description of this case with discussion of the following questions: (1) Is it ethically permissible to deactivate this particular device, the TAH? (2) Are there any particular factors in this case that are ethical contraindications to proceeding with deactivation? (3) What are the specific processes necessary to ensure a compassionate and respectful deactivation? (4) What proactive practices could have been implemented to lessen the intensity of this case's challenges? We close with a list of recommendations for managing similar cases.

Hospital administrators may lack familiarity with what clinical ethicists do (and do not do), and many clinical ethicists report receiving inadequate financial support for their clinical ethics consultation services (CECSs). Ethics consultation is distinct in that it is not reimbursable by third parties, and its financial benefit to the hospital may not be quantifiable. These peculiarities make it difficult for clinical ethicists to resort to tried-and-true outcome-centered evaluative strategies, like cost reduction or shortened length of stay for patients, to show a "need" for ethics consultation. Likewise, it can be difficult for clinical ethicists to "speak the same language" as healthcare administrators and managers, which, in turn, means that CECSs run the risk of being unable to demonstrate value to those who pay for the service. The purpose of this descriptive article is to provide practical guidance to clinical ethicists and program directors on how to cultivate administrative support for a CECS. Specifically, we discuss two elements that clinical ethics leaders must critically appraise and successfully argue to meet the expectations of administrators-the value of a CECS and its fit in clinical workflow.

At present, there is a House bill in the Texas Legislature that would shift Texas from an opt-in organ donation model – a model requiring explicit consent for organ donation from the donor or donor's family – to an opt-out, or presumed consent, model. Under this new bill, the state would assume that a person agreed to organ donation unless the donor registered an objection. If passed, this law would be the first-of-its-kind in the United States, and it represents the direct inverse of the nation's current opt-in model as outlined by the Uniform Anatomical Gift Act (although the bill does not violate federal law). (1) Recently, lawmakers in other states such as Delaware and New York have proposed similar bills. Proponents’ intentions are clear: to increase the number of available organs. They argue that data from other countries suggest that a shift from opt-in to opt-out could increase organ procurement. (2) This article is protected by copyright. All rights reserved.

Motion sensor–based monitoring technologies are designed to maintain independence and safety of older individuals living alone. These technologies use motion sensors that are placed throughout older individuals’ homes in order to derive information about eating, sleeping, and leaving/returning home habits. Deviations from normal behavioral patterns are detected using statistical analysis of activities of daily living. Sensors are linked to mobile devices and secure Web pages in order to transmit information to designated caregivers who live outside the home. It is difficult to make informed decisions about purchas ing new technologies. This article describes elements for making informed decisions about purchasing motion sensor–based monitoring technologies and factors that could be used to evaluate these technologies. Case managers, physicians, nurses, and social workers may be asked to help older individuals and their families make informed purchasing decisions. Recommendations and practical tools are provided to best support these professionals in their dialog with older individuals and their families.

Transplant medicine is fraught with clinical-ethical issues. It is not uncommon to have ethicists on transplant teams to help navigate ethically complex cases and ethical questions. Clinical ethicists work in hospitals and/or other healthcare institutions identifying and addressing value-laden conflict and ethical uncertainties. As ethicists, we set out to describe our process and involvement in cases involving extracorporeal membrane oxygenation (ECMO). Our work centers on monitoring and optimizing communication among clinicians, families, and patients, with the goals of (1) aligning patient/family understanding of the nature and purpose of ECMO while encouraging realistic expectations for possible outcomes, and (2) proactively mitigating the moral distress of providers involved in complex ECMO cases. We close with recommendations for how to measure the impact of ethicists' involvement in ECMO cases.

Physicians must ask themselves ethical questions before recommending participation in phase I trials to patients. Virtual Mentor is a monthly bioethics journal published by the American Medical Association.

A time-limited trial is an agreement between clinicians and patients or surrogate decision makers to use medical therapies over a defined period of time to see if the patient improves or deteriorates according to agreed-upon clinical milestones. Although time-limited trials are broadly advocated, there is little empirical evidence of the benefits and risks of time-limited trials, when they are initiated, when and why they succeed or fail, and what facilitates completion of them. Our study objectives were to 1) identify the purposes for which clinicians use time-limited trials and 2) identify barriers and facilitators to initiating and completing time-limited trials.Semistructured interviews: We analyzed interviews using qualitative description with constant comparative techniques.Nine hundred-bed, academic, tertiary hospital in Houston, Texas. Interviewees were from open medical, surgical, neurosurgical, and cardiovascular ICUs.Thirty healthcare professionals were interviewed (nine surgeons, 16 intensivists, three nurse practitioners, and two "other" clinicians).None.Interviewees reported initiating time-limited trials for three different purposes: to prepare surrogates and clinicians for discussion and possible shifts toward comfort-care only therapies, build consensus, and refine prognostic information. The main barriers to initiating time-limited trials involve clinicians' or surrogate decision makers' disagreement on setting a time limit. Barriers to completing time-limited trials include 1) requesting more time; 2) communication breakdowns because of rotating call schedules; and 3) changes in clinical course. Finally, facilitators to completing time-limited trials include 1) having defined goals about what could be achieved during an ICU stay, either framed in narrow, numeric terms or broad goals focusing on achievable activities of daily living; 2) applying time-limited trials in certain types of cases; and 3) taking ownership to ensure completion of the trial.An understanding of barriers and facilitators to initiating and completing time-limited trials is an essential first step toward appropriate utilization of time-limited trials in the ICUs, as well as developing educational or communication interventions with clinicians to facilitate time-limited trial use. We provide practical suggestions on patient populations in whom time-limited trials may be successful, the setting, and clinicians likely to benefit from educational interventions, allowing clinicians to have a fuller sense of when and how to use time-limited trials.

Background A greater understanding of how beliefs and perceptions inform LVAD placement refusals can help ensure that standards for informed decision making are met. We report on the factors that influence refusal and what accounts for changes in decliners' decision-making process when, and if, that occurs. Method and Results We identified candidates (8 bridge to transplant; 6 destination therapy, 7 without designation) who declined LVAD placement (n = 21), 11 of whom were identified prospectively from February 2014 to March 2015, and 10 of whom were identified retrospectively with the use of our program database. Of these 21 decliners, 11 candidates persistently declined LVAD placement, with a median time of 175 days elapsing between time of LVAD offer and March 4, 2015. Ten candidates declined for an average of 224 days before agreeing to LVAD placement. From March 2014 to March 2015, we conducted structured interviews with LVAD decliners. Interviews were audio recorded, transcribed verbatim, and analyzed quantitatively with the use of Atlas.ti. The findings reflect that refusal can evolve over time. Decliners report that their initial refusals were made reflexively, but the 10 decliners who ultimately opted for LVAD placement changed their decisions as symptoms worsened. Decliners have concerns about the impacts of LVAD treatment on mobility, and they distrust LVAD technology. Some decliners believe LVAD placement would affect their ability to receive a transplant. Finally, decliners believe that they are not sick enough for LVAD placement when they are stabilized with medical management. Conclusions Decliners' perspectives are integral for improving informed consent and refusal processes. Our analysis revealed decliners' decision-making processes and factors influencing their decisions. We provide several clinically based practical recommendations based on our findings.

Mr. N is a 45-year-old gentleman with a history of nonischemic cardiomyopathy. On September 1, 2011, Mr. N's cardiologist refers him to a tertiary facility due to refractory ventricular tachycardia...