We Should Widen Access to Physician-Assisted Death

Typical philosophical discussions of physician-assisted death (“pad”) have focused on whether the practice can be permissible. We address a different question: assuming that pad can be morally permissible, how far does that permission extend? We will argue that granting requests for pad may be permissible even when the pad recipient can no longer speak for themselves. In particular, we argue against the ‘competency requirement’ that constrains pad-eligibility to presently-competent patients in most countries that have legalized pad. We think pad on terminally ill, incapacitated patients can be morally permissible in cases where advance directives or suitable surrogate decision-makers are available, and should be legally permissible in such cases as well. We argue that this view should be accepted on pain of inconsistency: by allowing surrogate decision-makers to request withdrawal of life-sustaining care on behalf of patients and by allowing patients to request pad, we rule out any plausible justification for imposing a competency requirement on pad.

Abstract 12789: Development of the Tool to EMPOwer Surrogate Decision Makers of Comatose Survivors of Cardiac Arrest

Introduction: Surrogate decision makers (SDMs) for comatose survivors of cardiac arrest are often charged with making time-sensitive complex decisions with regard to life-sustaining therapies in a sudden critical illness. We describe the development of a decision aid for SDMs of comatose survivors of cardiac arrest. Methods: Applying recommendations from the International Patient Decision Aid Standards, we developed this decision aid iteratively with the purpose to educate families on post-arrest care and evidence based decision-making. We obtained feedback from stakeholders, including surrogate decision makers, patients, caregivers, nurses and physicians, in focus groups and semi-structured interviews. Results: Informed by interviews with SDMs and the AHA Guidelines, we designed a prototype of the decision aid. Each iteration resulted in a refined version of the aid (Figure). Step 1 included feedback from the Shared Decision-Making Core at the Adult and Child Consortium on Outcomes Research and Delivery Science (ACCORDS). Step 2 incorporated feedback from the ACCORDS Community Engagement Stakeholder group. Step 3 consisted of 10 semi-structured interviews with informal caregivers and patient pairs within the Advanced Heart Failure or Seniors clinics. The document was then reviewed by a team of expert cardiac arrest stakeholders. The aid includes key definitions, a timeline of post-arrest care, factors that support decisions to discontinue or pursue life sustaining therapies, commonly asked questions and an illustration of a patient undergoing post-arrest treatment. The decision aid, entitled T ool to EMPO wer (TEMPO) Surrogate Decision Makers, is written at a 7 th grade reading level. Conclusions: Through a robust iterative process, we designed a decision aid for SDMs of comatose survivors of cardiac arrest. The aid is intended to support the decision to pursue or forego further life-sustaining therapy and to be informative about post-arrest care.

Abstract 13114: Effectiveness of a Novel Decision Aid for Surrogate Decision Makers of Comatose Survivors of Cardiac Arrest: A Pilot Study of the “Tool to EMPOwer Surrogate Decision Makers” (TEMPO)

Introduction: Surrogate decision makers (SDMs) represent critical stakeholders in decision making for comatose survivors of cardiac arrest, yet these individuals are often unprepared for decision making and unfamiliar with the complexity of post-cardiac arrest care. To that end, we created a decision aid for SDMs intended to inform and support evidence-based decision making for comatose survivors of cardiac arrest. Methods: We conducted a pilot trial to measure real world effectiveness of the Tool to EMPOwer (TEMPO) Surrogate Decision Makers, by measuring knowledge and acceptability. Individuals were enrolled who self-identified as the SDM for a comatose survivor of OHCA admitted to an academic tertiary care hospital. Participants completed a pre-intervention survey prior to the provision of TEMPO, and a post-intervention survey approximately 24 hours after exposure to the intervention. Pre-survey questions included SDM demographics and an 8-question knowledge survey. Post-intervention surveys included the same knowledge questions, the Ottawa Acceptability of Decision Aid tool, and questions to measure if SDMs shared TEMPO with others. This study was approved by the Colorado Multiple Institutional Review Board and registered at Clinicaltrials.gov (NCT03908346). Results: Twenty SDMs were enrolled between 9/1/2020 and 6/7/2021. One subject did not complete the post-intervention survey therefore 19 subject responses were analyzed for the purpose of this report. Participants were 85.0% Female, 47.4 +/- 14.8 years, and 45.0% were the spouse of the patient. In the 8-question knowledge survey, results improved from 57.2% correct to 90.8% correct after exposure to TEMPO (p<0.001). Using the Ottawa Acceptability Tool, 89.5% of participants stated TEMPO was useful in decision-making and 94.7% reported that TEMPO made their decision “easier”. Most (79.0%) participants reported they shared the DA with another family/friend in-person, while some (52.6%) reported they shared content with another person by telephone. Conclusion: Initial pilot data on the efficacy of the Tool to EMPOwer Surrogate Decision Makers of comatose survivors of cardiac arrest shows significant promise in improving knowledge and supporting decision-making.

The Ethics of Uncertainty

Disorders of consciousness (DoCs) raise difficult and complex questions about the value of life for persons with impaired consciousness, the rights of persons unable to make medical decisions, and our social, medical, and ethical obligations to patients whose personhood has frequently been challenged and neglected. Recent neuroscientific discoveries have led to enhanced understanding of the heterogeneity of these disorders and patients, and focused renewed attention on the disturbingly high rate of misdiagnosis. This book examines the entanglement of epistemic and ethical uncertainty in DoCs and other medical contexts, and how they interact to create both epistemic and ethical risks. Philosopher and bioethicist L. Syd M Johnson pulls together multiple threads—the ontological mysteries of consciousness, medical uncertainty about unconsciousness, ableist bias, withdrawal of treatment in neurointensive care, and the rarely questioned view that consciousness is essential to personhood and moral status. Johnson challenges longstanding bioethical dogmas about DoC patients, and argues for an ethics of uncertainty for contexts where there is a need for decisive action in the presence of unavoidable uncertainty. The ethics of uncertainty refocuses ethical inquiry concerning persons with DoCs, placing less emphasis on their contested personhood, and more on inductive risk and uncertainty, on respect for autonomy, and especially on epistemic justice, and the duties of privileged epistemic agents. It is an approach with applications beyond brain injury, encouraging an expansive and humane approach that enables surrogate decision makers facing fraught, complex, risky choices to fulfill their obligations as moral and epistemic agents.

Feasibility and acceptability of virtually coaching residents on communication skills: a pilot study

Background Developing communication skills is a key competency for residents. Coaching, broadly accepted as a training modality in medical education, has been proven a successful tool for teaching communication skills. Little research is available thus far to investigate virtual coaching on communication skills for telemedicine encounters. The purpose of the study was to test the hypothesis that virtually coaching residents on communication skills is feasible and acceptable. We surveyed 21 resident-faculty pairs participating in a “fully virtual” coaching session (patient, coach, and resident were virtual). Methods We asked 50 neurology resident-faculty coach pairs to complete one “fully virtual” coaching session between May 20 and August 31, 2020. After each session, the resident and coach completed a 15-item survey, including Likert-style scale and open-ended questions, assessing feasibility and acceptability. Descriptive statistics and qualitative content and thematic analyses were performed. Results Forty-two percent (21/50) of all eligible residents completed “fully virtual” coaching sessions. The overall survey response rate was 91 % (38/42). The majority of respondents agreed that the direct observation and debriefing conversation were easy to schedule and occurred without technical difficulties and that debriefing elements (self-reflection, feedback, takeaways) were useful for residents. Ninety-five percent of respondents rated the coach’s virtual presence to be not at all disruptive to the resident-patient interaction. Virtual coaching alleviated resident stress associated with observation and was perceived as an opportunity for immediate feedback and a unique approach for resident education that will persist into the future. Conclusions In this pilot study, residents and faculty coaches found virtual coaching on communication skills feasible and acceptable for telemedicine encounters. Many elements of our intervention may be adoptable by other residency programs. For example, residents may share their communication goals with clinic faculty supervisors and then invite them to directly observe virtual encounters what could facilitate targeted feedback related to the resident’s goals. Moreover, virtual coaching on communication skills in both the in-person and telemedicine settings may particularly benefit residents in challenging encounters such as those with cognitively impaired patients or with surrogate decision-makers.

Cross-sectional survey of surrogate decision-making in Japanese medical practice

Background Instances of surrogate decision-making are expected to increase with the rise in hospitalised older adults in Japan. Few large-scale studies have comprehensively examined the entire surrogate decision-making process. This study aimed to gather information to assess the current state of surrogate decision-making in Japan. Methods A cross-sectional survey was conducted using online questionnaires. A total of 1000 surrogate decision-makers responded to the questionnaire. We examined the characteristics of surrogate decision-makers and patients, content of surrogate decision-making meeting regarding life-sustaining treatment between the doctors and surrogate decision-makers, extent of involvement of the various parties in the surrogate decision-making process, judgement grounds for surrogate decision-making, and frequency of involvement in the surrogate decision-making process. Results Of the participants, 70.5% were male and 48.3% were eldest sons. Only 7.6% of the patients had left a written record of their preferences and 48.8% of the surrogates reported no knowledge of the patient having expressed their prior intentions regarding medical care in any form. Respondents indicated that their family meetings with healthcare professionals mostly included the information recommended by guidelines in a surrogate decision-making meeting in Japan. Most participants reported a good understanding of the meeting content. Although many participants based their decisions on multiple grounds, surrogates’ considerations may not adequately reflect respect for patient autonomy in Japan. Specifically, the eldest son considered his own preference more frequently than that of the other surrogate decision-makers. In 26.1% of the cases, either zero or one family meeting with healthcare professionals was held. In these cases, significantly fewer decisions involved the participation of healthcare professionals other than the doctor compared to cases with multiple meetings. Conclusions Surrogate decisions in Japan are most commonly made by eldest sons and may not frequently consider the perspectives of other surrogates. The finding that patient preferences were rarely known suggests a role for increased advance care planning.

Daily Telephone Call During the COVID-19 Pandemic: Perceptions of Families and Providers

Background In intensive care units (ICUs), the quality of communication with families is a key point in the caregiver-patient-family relationship. During the COVID-19 pandemic, hospital visits were prohibited, and many ICUs implemented a daily telephone call strategy to ensure continuity of communication with patients’ families. Objective To assess how family members and health care providers perceived this communication strategy. Methods The study was conducted in a 45-bed ICU during the COVID-19 pandemic. Communication with families consisted of a single daily telephone call from the senior physician in charge of the patient to the patient’s surrogate decision maker. Satisfaction was qualitatively assessed via an anonymous online questionnaire with open-ended questions. Results Participants completed 114 questionnaires. Forty-six percent of surrogate decision makers stated that the key medical messages were understandable, but 57% of other family members expressed that the frequency of information delivery was insufficient. Fifty-six percent of the physicians described the practice as functional for the organization of the unit. Among health care providers other than physicians, 55% felt that not having to interact with families decreased their emotional load and 50% mentioned saving time and the absence of task interruptions as positive aspects. Conclusion Fixed-time, daily telephone calls in the ICU allowed satisfactory transmission of information between physicians and surrogate decision makers, as perceived by both parties. However, the telephone-based communication strategy could still be improved.

Clinician Ethical Perspectives on Extracorporeal Membrane Oxygenation in Practice

Purpose: Extracorporeal membrane oxygenation (ECMO) is an expensive and scarce life sustaining treatment provided to certain critically ill patients. Little is known about the informed consent process for ECMO or clinician viewpoints on ethical complexities related to ECMO in practice. Methods: We sent a cross-sectional survey to all departments providing ECMO within 7 United States hospitals in January 2021. One clinician from each department completed the 42-item survey representing their department. Results: Fourteen departments within 7 hospitals responded (response rate 78%, N = 14/18). The mean time spent consenting patients or surrogate decision-makers for ECMO varied, from 7.5 minutes (95% CI 5-10) for unstable patients to 20 minutes (95% CI 15-30) for stable patients (p = 0.0001). Few clinician respondents (29%) report patients or surrogate decision-makers always possess informed consent for ECMO. Most departments (92%) have absolute exclusion criteria for ECMO such as older age (43%, cutoffs ranging from 60-75 years), active malignancy (36%), and elevated body mass index (29%). A significant minority of departments (29%) do not always offer the option to withdraw ECMO to patients or surrogate decision-makers. For patients who cannot be liberated from ECMO and are ineligible for heart or lung transplant, 36% of departments would recommend the patient be removed from ECMO and 64% would continue ECMO support. Conclusion: Adequate informed consent for ECMO is a major ethical challenge, and the content of these discussions varies. Use of categorical exclusion criteria and withdrawal of ECMO if a patient cannot be liberated from it differ among departments and institutions.