{"title":"Understanding Rare Disease Experiences Through the Concept of Morally Problematic Situations.","authors":"Ariane Quintal, Élissa Hotte, Caroline Hébert, Isabelle Carreau, Annie-Danielle Grenier, Yves Berthiaume, Eric Racine","doi":"10.1007/s10730-023-09511-4","DOIUrl":"10.1007/s10730-023-09511-4","url":null,"abstract":"<p><p>Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth understanding of morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10247800","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-08-22DOI: 10.1007/s10730-024-09536-3
George E Freigeh, Hannah Fagen, Janice Firn
{"title":"Review of Outpatient Pediatric Ethics Consults at an Academic Medical Center.","authors":"George E Freigeh, Hannah Fagen, Janice Firn","doi":"10.1007/s10730-024-09536-3","DOIUrl":"https://doi.org/10.1007/s10730-024-09536-3","url":null,"abstract":"<p><p>Limited data exist in the specific content of pediatric outpatient ethics consults as compared to inpatient ethics consults. Given the fundamental differences in outpatient and inpatient clinical care, we aimed to describe the distinctive nature of ethics consultation in the ambulatory setting. This is a retrospective review at a large, quaternary academic center of all outpatient ethics consults in a 6-year period. Encounter-level demographic data was recorded, and primary ethical issue and contextual features were identified using qualitative conceptual content analysis. A total of 48 consults were identified representing 44 unique patients. The most common primary ethical issue was beneficence and best interest concern comprising 20 (42%) consults, followed by refusal of recommended treatment comprising 11 (23%) consults and patient preference/assent comprising 5 (10%) consults. The most common contextual features were staff-family communication dispute/conflict comprising 28 (58%) consults, followed by legal involvement comprising 25 (52%) consults and quality of life comprising 19 (40%) consults. The most common consulting specialty was hematology/oncology. Ethical issues encountered in the provision of outpatient pediatric care are distinct and differ from those in inpatient consults. Further research is necessary to identify strategies and educational gaps in outpatient ethics consultation to increase its effectiveness and utilization.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142019100","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-08-03DOI: 10.1007/s10730-024-09535-4
Vanessa Amos, Phyllis Whitehead, Beth Epstein
{"title":"Moral Distress Consultation Services: Insights from Consultants.","authors":"Vanessa Amos, Phyllis Whitehead, Beth Epstein","doi":"10.1007/s10730-024-09535-4","DOIUrl":"https://doi.org/10.1007/s10730-024-09535-4","url":null,"abstract":"<p><p>Moral distress reflects often recurrent problems within a healthcare environment that impact the quality and safety of patient care. Examples include inadequate staffing, lack of necessary resources, and poor interprofessional teamwork. Recognizing and acting on these issues demonstrates a collaborative and organizational commitment to improve. Moral distress consultation is a health system-wide intervention gaining momentum in the United States. Moral distress consultants assist healthcare providers in identifying and strategizing possible solutions to the patient, team, and systemic barriers behind moral distress. Moral distress consultants offer unique perspectives on the goals, successes, areas for improvement, and sustainability of moral distress consultation. Their ideas can help shape this intervention's continued growth and improvement. This qualitative descriptive study features 10 semi-structured interviews with moral distress consultants at two institutions with longstanding, active moral distress consultation services. Themes from consultant transcripts included consultant training, understanding the purpose of moral distress consultation, interfacing with leadership teams, defining success, and improving visibility and sustainability of the service. These findings describe the beginnings of a framework that organizations can use to either start or strengthen moral distress consultation services, as well as the first steps in developing an evaluation tool to monitor their utility and quality.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890395","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-08-02DOI: 10.1007/s10730-024-09528-3
Christopher Lyon
{"title":"Canada's Medical Assistance in Dying System can Enable Healthcare Serial Killing.","authors":"Christopher Lyon","doi":"10.1007/s10730-024-09528-3","DOIUrl":"https://doi.org/10.1007/s10730-024-09528-3","url":null,"abstract":"<p><p>The Canadian approach to assisted dying, Medical Assistance in Dying (MAiD), as of early 2024, is assessed for its ability to protect patients from criminal healthcare serial killing (HSK) to evaluate the strength of its safeguards. MAiD occurs through euthanasia or self-administered assisted suicide (EAS) and is legal or considered in many countries and jurisdictions. Clinicians involved in HSK typically target patients with the same clinical features as MAiD-eligible patients. They may draw on similar rationales, e.g., to end perceived patient suffering and provide pleasure for the clinician. HSK can remain undetected or unconfirmed for considerable periods owing to a lack of staff background checks, poor surveillance and oversight, and a failure by authorities to act on concerns from colleagues, patients, or witnesses. The Canadian MAiD system, effectively euthanasia-based, has similar features with added opportunities for killing afforded by clinicians' exemption from criminal culpability for homicide and assisted suicide offences amid broad patient eligibility criteria. An assessment of the Canadian model offers insights for enhancing safeguards and detecting abuses in there and other jurisdictions with or considering legal EAS. Short of an unlikely recriminalization of EAS, better clinical safeguarding measures, standards, vetting and training of those involved in MAiD, and a radical restructuring of its oversight and delivery can help mitigate the possibility of abuses in a system mandated to accommodate homicidal clinicians.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141876263","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-07-09DOI: 10.1007/s10730-024-09533-6
Elaine C Meyer, Giulia Lamiani, Melissa Uveges, Renee McLeod-Sordjan, Christine Mitchell, Robert D Truog, Jonathan M Marron, Kerri O Kennedy, Marilyn Ritholz, Stowe Locke Teti, Aimee B Milliken
{"title":"Everyday Clinical Ethics: Essential Skills and Educational Case Scenarios.","authors":"Elaine C Meyer, Giulia Lamiani, Melissa Uveges, Renee McLeod-Sordjan, Christine Mitchell, Robert D Truog, Jonathan M Marron, Kerri O Kennedy, Marilyn Ritholz, Stowe Locke Teti, Aimee B Milliken","doi":"10.1007/s10730-024-09533-6","DOIUrl":"https://doi.org/10.1007/s10730-024-09533-6","url":null,"abstract":"<p><p>Bioethics conjures images of dramatic healthcare challenges, yet everyday clinical ethics issues unfold regularly. Without sufficient ethical awareness and a relevant working skillset, clinicians can feel ill-equipped to respond to the ethical dimensions of everyday care. Bioethicists were interviewed to identify the essential skills associated with everyday clinical ethics and to identify educational case scenarios to illustrate everyday clinical ethics. Individual, semi-structured interviews were conducted with a convenience sample of bioethicists. Bioethicists were asked: (1) What are the essential skills required for everyday clinical ethics? And (2) What are potential educational case scenarios to illustrate and teach everyday clinical ethics? Participant interviews were analyzed using qualitative content analysis. Twenty-five (25) bioethicists completed interviews (64% female; mean 14.76 years bioethics experience; 80% white). Five categories of general skills and three categories of ethics-specific skills essential for everyday clinical ethics were identified. General skills included: (1) Awareness of Core Values and Self-Reflective Capacity; (2) Perspective-Taking and Empathic Presence; (3) Communication and Relational Skills; (4) Cultural Humility and Respect; and (5) Organizational Understanding and Know-How. Ethics-specific skills included: (1) Ethical Awareness; (2) Ethical Knowledge and Literacy; and (3) Ethical Analysis and Interaction. Collectively, these skills comprise a Toolbox of Everyday Clinical Ethics Skills. Educational case scenarios were identified to promote everyday ethics. Bioethicists identified skills essential to everyday clinical ethics. Educational case scenarios were identified for the purpose of promoting proficiency in this domain. Future research could explore the impact of integrating educational case scenarios on clinicians' ethical competencies.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141560039","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-06-08DOI: 10.1007/s10730-024-09534-5
Leana G Araujo, Martin Shaw, Edwin Hernández
{"title":"The Structure of Clinical Ethical Decision-Making: A Hospital System Needs Assessment.","authors":"Leana G Araujo, Martin Shaw, Edwin Hernández","doi":"10.1007/s10730-024-09534-5","DOIUrl":"https://doi.org/10.1007/s10730-024-09534-5","url":null,"abstract":"<p><p>Bioethical dilemmas can emerge in research and clinical settings, from end-of-life decision-making to experimental therapies. The COVID-19 pandemic raised serious ethical challenges for healthcare organizations, highlighting the need to conduct needs assessments of the bioethics infrastructures of healthcare organizations. Clinical ethics committees (CECs) also create equitable policies, train staff on ethics issues, and play a consultative role in resolving the difficulty of complex individual cases. The main objective of this project was to conduct a needs assessment of the bioethics infrastructure within a comprehensive hospital system. A cross-sectional anonymous online survey, including quantitative and qualitative formatted questions. The survey was sent to five key leaders from the organization's hospitals. Survey questions focused on the composition, structure, function, and effectiveness of their facilities' bioethics infrastructure and ethics-related training and resources. Positive findings included that most facilities have active CECs with multidisciplinary membership; CECs address critical issues and encourage team members to express clinical ethics concerns. Areas of concern included uncertainty about how CECs function and the process for resolving clinical ethics dilemmas. Most reported no formal orientation process for CEC members, and many said there was no ongoing ethics education process. The authors conclude that if CECs are a critical institutional resource where the practice of medicine and mission intersect, having well-functioning ethics committees with trained and oriented members demonstrates an essential commitment to the mission. The survey revealed that more needs to be done to bolster the bioethics infrastructure of this institution.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.5,"publicationDate":"2024-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141293815","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-06-01Epub Date: 2022-11-10DOI: 10.1007/s10730-022-09500-z
Md Sanwar Siraj
{"title":"Living Organ Donation for Transplantation in Bangladesh: Reality and Problems.","authors":"Md Sanwar Siraj","doi":"10.1007/s10730-022-09500-z","DOIUrl":"10.1007/s10730-022-09500-z","url":null,"abstract":"<p><p>The stipulation of living organ transplantation policy and practice in Bangladesh is family-oriented, with relatives being the only people legally eligible to donate organs. There have been very few transplantations of bone marrows, liver lobes, and kidneys from related-living donors in Bangladesh. The major question addressed in this study is why Bangladesh is not getting adequate organs for transplantation. In this study, I examin the stipulations of the policy and practice of living organ donation through the lens of 32 key stakeholders including physicians and nurses, a health administrator, organ donors and recipients, and their family members, as they can shed light on the realities and problems of organ donation for transplantation in Bangladesh. My ethnography reveals that the family members are always encouraged to donate organs for transplantation, and saving the lives of relatives through organ donation is seen as a moral obligation. Many view saving the life of a relative by donating one's organs as equivalent to saving one's own life. An assessment of the dynamics of biomedicine, religion, and culture leads to the conclusion that the family-oriented organ donation policy and practice have been widely endorsed and accepted in Bangladesh, and Islamic ethical principles and collective family ethos undergird that policy and practice. However, the unavailability of medical resources, lack of post-operative coverage for organ donors, religious misconceptions and unawareness of the general public, and the absence of posthumously donated vital organs for transplantation are perceived to be the most common barriers to a successful living donor-recipient pair organ transplantation. By overcoming these obstacles, Bangladesh can develop a successful living donor-recipient pair organ transplantation program that will ensure improved healthcare outcomes, promote altruism and solidarity among Bangladeshi families, and protect the poor from having their organs sold to wealthy patients.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.5,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40464335","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-06-01Epub Date: 2022-11-08DOI: 10.1007/s10730-022-09499-3
Colin Farrelly
{"title":"Aging, Equality and the Human Healthspan.","authors":"Colin Farrelly","doi":"10.1007/s10730-022-09499-3","DOIUrl":"10.1007/s10730-022-09499-3","url":null,"abstract":"<p><p>John Davis (New Methuselahs: The Ethics of Life Extension, The MIT Press, Cambridge, 2018) advances a novel ethical analysis of longevity science that employs a three-fold methodology of examining the impact of life extension technologies on three distinct groups: the \"Haves\", the \"Have-nots\" and the \"Will-nots\". In this essay, I critically examine the egalitarian analysis Davis deploys with respect to its ability to help us theorize about the moral significance of an applied gerontological intervention. Rather than focusing on futuristic scenarios of radical life extension, I offer a rival egalitarian analysis that takes seriously (1) the health vulnerabilities of today's aging populations, (2) the health inequalities of the \"aging status quo\" and, (3) the prospects for the fair diffusion of an aging intervention over the not-so-distant future. Despite my reservations about Davis's focus on \"life-extension\" vs. increasing the human \"healthspan\", I agree with his central conclusion that an aging intervention would be, on balance, a good thing and that we should fund such research aggressively. But, I make an even stronger case and conjecture that an intervention that slows down the rate of molecular and cellular decline from the inborn aging process will likely be one of the most important public health advancements of the twenty-first century. This is so because aging is the most prevalent risk factor for chronic disease, frailty and disability, and it is estimated that there will be over 2 billion persons age > 60 by the year 2050.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.5,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9644010/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40461604","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-06-01Epub Date: 2022-09-07DOI: 10.1007/s10730-022-09494-8
Tatjana Weidmann-Hügle, Settimio Monteverde
{"title":"Clinical Ethics Consultation in Chronic Illness: Challenging Epistemic Injustice Through Epistemic Modesty.","authors":"Tatjana Weidmann-Hügle, Settimio Monteverde","doi":"10.1007/s10730-022-09494-8","DOIUrl":"10.1007/s10730-022-09494-8","url":null,"abstract":"<p><p>Leading paradigms of clinical ethics consultation closely follow a biomedical model of care. In this paper, we present a theoretical reflection on the underlying biomedical model of disease, how it shaped clinical practices and patterns of ethical deliberation within these practices, and the repercussions it has on clinical ethics consultations for patients with chronic illness. We contend that this model, despite its important contribution to capturing the ethical issues of day-to-day clinical ethics deliberation, might not be sufficient for patients presenting with chronic illnesses and navigating as \"lay experts\" of their medical condition(s) through the health care system. Not fully considering the sources of personal knowledge and expertise may lead to epistemic injustice within an ethical deliberation logic narrowly relying on a biomedical model of disease. In caring \"for\" and collaboratively \"with\" this patient population, we answer the threat of epistemic injustice with epistemic modesty and humility. We will propose ideas about how clinical ethics could contribute to an expansion of the biomedical model of care, so that important aspects of chronic illness experience would flow into clinical-ethical decision-making.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.5,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11070385/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40354776","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hec ForumPub Date : 2024-06-01Epub Date: 2022-12-15DOI: 10.1007/s10730-022-09502-x
David C Scott
{"title":"Democratizing Conscientious Refusal in Healthcare.","authors":"David C Scott","doi":"10.1007/s10730-022-09502-x","DOIUrl":"10.1007/s10730-022-09502-x","url":null,"abstract":"<p><p>Settling the debate over conscientious refusal (CR) in liberal democracies requires us to develop a conception of the healthcare provider's moral role. Because CR claims and resulting policy changes take place in specific sociopolitical contexts with unique histories and diverse polities, the method we use for deriving the healthcare norms should itself be a democratic, context-dependent inquiry. To this end, I begin by describing some prerequisites-which I call publicity conditions-for any democratic account of healthcare norms that conflict or jibe with CR. Next, drawing on Ronald Dworkin's jurisprudence and Tom Beauchamp & James Childress's approach to bioethical reasoning, I briefly introduce one method for generating healthcare norms that is faithful to the publicity conditions and has potential to constructively, and democratically, derive important boundaries for CR. Finally, I argue that many critics of CR fail to similarly ground their accounts of healthcare norms in healthcare professionals' sociopolitical contexts, often relying instead on their own interpretation of a generally stateable healthcare norm. This leads to their misconstruing both the value judgments on which their own approaches rest and the public, political values that are often invoked in favor of CR.</p>","PeriodicalId":46160,"journal":{"name":"Hec Forum","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9753870/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10356500","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}