The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family (...) wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family. (shrink)

The purpose of this article is to investigate how cultural meanings associated with the left ventricular assist device inform acceptance and experience of this innovative technology when it is used as a destination therapy. We conducted open-ended, semistructured interviews with family caregivers and patients who had undergone LVAD-DT procedures at six U.S. hospitals. A grounded theory approach was used for the analysis. Thirty-nine patients and 42 caregivers participated. Participants described a sense of obligation to undergo the procedure because of its (...) promise for salvation. However, once the device was implanted, patients described being placed into a liminal state of being neither sick nor healthy, with no culturally scripted role. Consideration of end-of-life decisions was complicated by the uncertainties about how patients with LVADs die. Pre-implantation communications among patient, family, and clinicians should take into account the impact of the technology on meaning, identity, and patient experience. (shrink)

Many bioethical arguments rely implicitly on the assumption that the concept of “human part” is one on which everyone must agree, because it is unambiguous. But various parties interpret this “unambiguous” term in incompatible ways, leading to contention. This article is an informal presentation of a topomereological system on whose preferred interpretation several distinct but related meanings of “human part” can be isolated: part of a human body, part of the completion of a human body, and part of a human (...) being. A case is analyzed (the first total artificial heart (TAH) implantation), demonstrating in the process much of the apparatus of the system. By means of a casuistic methodology, the analysis is translated into recommendations for the ethical conduct of future TAH research. The more general conclusion, however, is that formal methods may provide useful tools for clarifying thought processes and organizing arguments in debates over bioethical issues. (shrink)

Background Pediatric critical care physician attitudes about withdrawal of ventricular assist devices (VAD) and extracorporeal membrane oxygenation (ECMO) in cases of medical futility are poorly defined. Our aim was to define current attitudes regarding the withdrawal of these devices. Methods IRB-approved, cross-sectional observational survey conducted among pediatric critical care attending physicians and fellow physicians in the United States between 2016 and 2017. Data was collected anonymously and statistically analyzed. Results A total of 158 physicians responded with 67% being attending physicians. (...) Compared to a VAD, a higher percentage had taken care of a patient on ECMO where the device was turned off because care was believed to be futile (99% vs. 84%), including currently (95% vs. 57%). Nearly all reported that it can be ethically permissible to withdraw support from a patient with a VAD and on ECMO (97% vs. 99%), but varied opinions existed as to who should ultimately make this decision if the patient/their family disagrees. More respondents agreed that a patient/their family should agree to withdrawal of VAD or ECMO support prior to initiation if futility is later determined (60% vs. 58%) and that protocols should be created for VAD and ECMO withdrawal (77% vs. 76%). Conclusion Most pediatric critical care physicians felt that it can be ethically permissible to withdraw VAD and ECMO support. Our study indicates that pediatric VAD and ECMO withdrawal protocols are desired, but further investigation is needed to determine how to best design protocols that would incorporate multiple stakeholders. (shrink)