The Italian Master in Clinical Bioethics Consultation: 2013-2020 Experience

"This work is aimed at critically illustring the eight-year experience of the Master in “Clinical Bioethics Consultation” (2013-2020). This advanced second-level Master was promoted in 2013 by the Catholic University of the Sacred Heart of Rome, and co-worked by other Italian clinical as well as academic institutions (University Campus Bio-medico of Rome, Insubria University of Varese, “Federico II” University of Naples, Lanza Foundation of Padua, Local Health and Social Care Unit n. 7 (ULSS) of Veneto Region, Treviso; Ospedale San Giovanni Calibita Fatebenefratelli – Isola Tiberina, Rome, and Italian Group for clinical ethics consultation (GIBCE)). To this aim, it first will discuss two points: on the one hand, an epistemological one, i.e. the justification of the activity of ethics consultant in clinical settings supported by the authors; on the other hand, a pedagogical one, i.e. the identification of the learning needs clinical bioethics gives birth to. The second part of the work will focus on the experience of the Master, explaining its basic features (objectives, methods, contents, evaluation tools, etc), offering a critical review, and identifying the challenges this initiative has to face in the next future. "

New Ethical Issues in Cerebral Palsy

Current societal and technological changes have added to the ethical issues faced by people with cerebral palsy. These include new representations of disability, and the current International Classification of Functioning, Disability, and Health, changes in legislation and international conventions, as well as applications of possibilities offered by robotics, brain–computer interface devices, muscles and brain stimulation techniques, wearable sensors, artificial intelligence, genetics, and more for diagnostic, therapeutic, or other purposes. These developments have changed the way we approach diagnosis, set goals for intervention, and create new opportunities. This review examines those influences on clinical practice from an ethical perspective and highlights how a principled approach to clinical bioethics can help the clinician to address ethical dilemmas that occur in practice. It also points to implications of those changes on research priorities.

Practising what we preach: clinical ethicists’ professional perspectives and personal use of advance directives

The field of clinical bioethics strongly advocates for the use of advance directives to promote patient autonomy, particularly at the end of life. This paper reports a study of clinical bioethicists’ perceptions of the professional consensus about advance directives, as well as their personal advance care planning practices. We find that clinical bioethicists are often sceptical about the value of advance directives, and their personal choices about advance directives often deviate from what clinical ethicists acknowledge to be their profession’s recommendations. Moreover, our respondents identified a pluralistic set of justifications for completing treatment directives and designating surrogates, even while the consensus view focuses on patient autonomy. Our results suggest important revisions to academic discussion and public-facing advocacy about advance care planning.

Dying individuals and suffering populations: applying a population-level bioethics lens to palliative care in humanitarian contexts: before, during and after the COVID-19 pandemic

BackgroundHumanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care—a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. Yet global guidance was available. In 2018, the WHO released a guide on ‘Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises’—the first guidance on the topic by an international body.AimsThis paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances.ImplicationsIn parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance.

Inappropriate hemodialysis treatment and palliative care

The paper discusses inappropriate (futile) treatment by analyzing the casuistics of palliative patients in the terminal stage of illness who are hospitalized at the Department of Internal Medicine and Geriatrics of the Faculty hospital with policlinic (FNsP). Our research applies the principles of palliative care in the context of bioethics. The existing clinical conditions of healthcare in Slovakia are characteristic of making a taboo of the issues of inappropriate treatment of palliative patients. Inductive-deductive and normative clinical bioethics methods of palliative care and ethical strategy are applied for defining issues found in inappropriate hemodialysis treatment. An algorithm of hemodialysis treatment requires the definition of those lege artis criteria which, in the context of a patient’s autonomy and his/her decision, precondition the avoidance of the situation in which hemodialysis treatment is inappropriate (futile). Futile treatment in a terminal condition is ethically inappropriate medical treatment that extends the suffering of patients and their relatives. Its definition is determined by the relevant legislation and the methods of bioethics. An active palliative strategy is aimed at managing the process of incurable diseases in the patient’s bio-psycho-socio-spiritual continuity in the process of special bioethics. The global bioethical objective of general bioethics for palliative care is based on the paradigm of social harmony and solidarity in the context of an authentic modus of the patient’s existence as a constitutive principle for the phenomenon of the patient’s being to finite being (death).

Conceptual Clarity in Clinical Bioethical Analysis

Conceptual clarity is essential when engaging in dialogue to avoid unnecessary disagreement and to promote mutual understanding. In this issue devoted to clinical bioethics, the authors exemplify the virtue of careful conceptual analysis as they explore complex clinical questions regarding the essential nature of medicine, the boundaries of killing and letting die, the meaning of irreversibility in definitions of death, the argument for a right to try experimental medications, the ethical borders in complex medical billing, and the definition and modeling of complex disease states.

Practicing Clinical Bioethics: Reflections from the Bedside

Biomedical dilemmas are becoming more complex as modern medical technologies continue to advance. In my capacity as a clinical bioethicist, I deal with patients and families confronted by ethical issues and questions that arise during medical treatment. Muslim patients often turn to their faith to help them make medical decisions. In their efforts to avoid what is religiously impermissible, they often ask local imams, community leaders, or Muslim physicians for advice. But these groups typically lack sufficient training when it comes to applying Islamic concepts to the medical dilemmas we face in American hospitals today. In fact, Muslim religious advisors who lack the appropriate medical and religious training should not be giving medical advice. Instead, they should refer their questions to the appropriate scholars, professionals, or referral centers. I have noticed that recommendations received from higher-level Islamic scholars with clinical backgrounds are usually more thoughtful, nuanced, and flexible. Clinicians, patients, and families must be able to access thoughtful Islamic scholarship that supports medical decision making in an accessible, timely, and clinically useful way. By intensifying efforts to combine religious scholarship, clinical understanding, and the effective dissemination of information, those in the field of Islamic bioethics scholarship can better help and support patients and families in determining the most appropriate religiously sanctioned options for their particular circumstances. The American Muslim community must prioritize this field of study.

Shine a Light Here, Dig Deeper Over There

There are numerous teaching and learning challenges in designing a fully online graduate program in bioethics. In order to ensure student success in any type of online graduate program, courses should be designed so that content is well organized and leads to enduring understanding of essential content. Student understanding in the online environment is uniquely dependent on clear communication of expectations. Content needs to be “chunked” into manageable components and organized so that learning builds throughout a course and program. Finally, online programs need to be humanized so that students are engaged in the course content and with peers and the faculty. One way to humanize online bioethics courses is to consistently integrate the health humanities such as poetry, literature, drama, and film as a means to highlight bioethics content in novel ways or encourage deeper exploration. This chapter describes program and course design for the online environment and uses a specific bioethics program to contextualize how the health humanities are woven through a graduate program. The chapter also provides specific examples of teaching and learning strategies in a clinical bioethics course that incorporates the health humanities. The chapter concludes with a description of emerging findings and broader significance for integrating the health humanities in bioethics education.