Living ethics: a stance and its implications in health ethics.

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a "living ethics", described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process.

Survey highlights the need for specific interventions to reduce frequent conflicts between healthcare professionals providing paediatric end-of-life care.

AIMS: This study explored how paediatric healthcare professionals experienced and coped with end-of-life conflicts and identified how to improve coping strategies. METHODS: A questionnaire was distributed to all 2300 professionals at a paediatric university hospital, covering the frequency of end-of-life conflicts, participants, contributing factors, resolution strategies, outcomes and the usefulness of specific institutional coping strategies. RESULTS: Of the 946 professionals (41%) who responded, 466 had witnessed or participated in paediatric end-of-life discussions: 73% said these had led to conflict, more frequently between professionals (58%) than between professionals and parents (33%). Frequent factors included professionals' rotations, unprepared parents, emotional load, unrealistic parental expectations, differences in values and beliefs, parents' fear of hastening death, precipitated situations and uncertain prognosis. Discussions with patients and parents and between professionals were the most frequently used coping strategies. Conflicts were frequently resolved by the time of death. Professionals mainly supported designating one principal physician and nurse for each patient, two-step interdisciplinary meetings - between professionals then with parents - postdeath ethics meetings, bereavement follow-up protocols and early consultations with paediatric palliative care and clinical ethics services. CONCLUSION: End-of-life conflicts were frequent and predominantly occurred between healthcare professionals. Specific interventions could target most of the contributing factors.

How is organ transplantation depicted in internal medicine and transplantation journals.

BACKGROUND: In their book Spare Parts, published in 1992, Fox and Swazey criticized various aspects of organ transplantation, including the routinization of the procedure, ignorance regarding its inherent uncertainties, and the ethos of transplant professionals. Using this work as a frame of reference, we analyzed articles on organ transplantation published in internal medicine and transplantation journals between 1995 and 2008 to see whether Fox and Swazey's critiques of organ transplantation were still relevant. METHODS: Using the PubMed database, we retrieved 1,120 articles from the top ten internal medicine journals and 4,644 articles from the two main transplantation journals (Transplantation and American Journal of Transplantation). Out of the internal medicine journal articles, we analyzed those in which organ transplantation was the main topic (349 articles). A total of 349 articles were randomly selected from the transplantation journals for content analysis. RESULTS: In our sample, organ transplantation was described in positive terms and was presented as a routine treatment. Few articles addressed ethical issues, patients' experiences and uncertainties related to organ transplantation. The internal medicine journals reported on more ethical issues than the transplantation journals. The most important ethical issues discussed were related to the justice principle: organ allocation, differential access to transplantation, and the organ shortage. CONCLUSION: Our study provides insight into representations of organ transplantation in the transplant and general medical communities, as reflected in medical journals. The various portrayals of organ transplantation in our sample of articles suggest that Fox and Swazey's critiques of the procedure are still relevant.

The enigmatic nature of altruism in organ transplantation: a cross-cultural study of transplant physicians' views on altruism.

BACKGROUND: Although altruism is a key principle in our current organ donation and transplantation system, the meanings and implications of the term have been widely debated. Recently, a new type of living organ donation--anonymous and non-directed, also called living altruistic donation (LAD)--has brought the issue into sharper focus. Transplant physicians' views on altruism might influence their attitudes and actions toward living altruistic donors. This study aimed to explore such views among transplant physicians in France and Quebec. FINDINGS: A total of 27 French and 19 Quebec transplant physicians participated in individual, semi-structured interviews between October 2004 and December 2005. The majority of these participants associated altruism with gratuitousness and saw altruistic acts as multiple and varied, ranging from showing consideration to saving a person's life. CONCLUSIONS: The transplant physicians' discourses on altruism were quite diverse, leading us to question the relevance of the concept in organ transplantation and the appropriateness of the term "living altruistic donation."

The use of personalized medicine for patient selection for renal transplantation: physicians' views on the clinical and ethical implications.

BACKGROUND: The overwhelming scarcity of organs within renal transplantation forces researchers and transplantation teams to seek new ways to increase efficacy. One of the possibilities is the use of personalized medicine, an approach based on quantifiable and scientific factors that determine the global immunological risk of rejection for each patient. Although this approach can improve the efficacy of transplantations, it also poses a number of ethical questions. METHODS: The qualitative research involved 22 semi-structured interviews with nephrologists involved in renal transplantation, with the goal of determining the professionals' views about calculating the global immunological risk and the attendant ethical issues. RESULTS: The results demonstrate a general acceptance of this approach amongst the participants in the study. Knowledge of each patient's immunological risk could improve treatment and the post-graft follow-up. On the other hand, the possibility that patients might be excluded from transplantation poses a significant ethical issue. This approach is not seen as something entirely new, given the fact that medicine is increasingly scientific and evidence-based. Although renal transplantation incorporates scientific data, these physicians believe that there should always be a place for clinical judgment and the physician-patient relationship. CONCLUSIONS: The participants see the benefits of including the calculation of the global immunological risk within transplantation. Such data, being more precise and rigorous, could be of help in their clinical work. However, in spite of the use of such scientific data, a place must be retained for the clinical judgment that allows a physician to make decisions based on medical data, professional expertise and knowledge of the patient. To act in the best interests of the patient is key to whether the calculation of the global immunological risk is employed.

Use of personalized medicine in the selection of patients for renal transplantation: views of Quebec transplant physicians and referring nephrologists.

AIM: To explore the views of physicians on the use of personalized medicine tools to develop a new method for selecting potential recipients of a renal allograft. METHODS: A total of 22 semidirected interviews, using clinical case studies. RESULTS: According to the participants, this method has several possible applications within renal transplantation (individualizing immunosuppressive therapy, help with decision making, and possibly with the selection of patients). It could be more effective than the method presently used. The method must be validated scientifically, and must also involve clinical judgment. CONCLUSION: The use of personalized medicine within transplantation must be in the best interests of the patient. An ethical reflection is necessary in order to focus on the possibility of patients being excluded, as well as on the resolution of the equity/efficacy dilemma. Empirical research has shown itself to be essential for ascertaining the views of the clinicians who will be working with the tools provided by personalized medicine.

Does American bioethics speak with one voice?

Many international organizations and countries have adopted the principles of American bioethics as their own principles. However, further analysis of what is going on in the United States shows that what we have come to call principlism is only one expression among many other health care ethics approaches that are found in the U.S. The first section of the text presents American bioethics from the point of view of principlism, the main focus being the creation of this vision, and its meaning. The second section examines, first of all, the critiques that from the beginning have been addressed to this approach; and secondly, other visions developed as much in response to the limits intrinsic to principlism as to the major changes that drive the American health system. In the third section, I will attempt to indicate that the real challenge of American bioethics is not a consequence of the tension existing between principlism and the other approaches, but that it arises in the political domain: the polarization between liberals and conservatives.

Los métodos empíricos, ¿una novedad en bioética / Les méthodes empiriques, une nouveauté en bioéthique?

En los últimos años, varios autores se han referido al llamado giro empírico de la bioética. Sin embargo, se puede afirmar que, desde su nacimiento, la bioética ha tenido esta preocupación. Si bien el desarrollo de la ciencia constituye el primer motivo para el surgimiento de la bioética, el segundo se debe a que este desarrollo motiva la llegada de nuevos jugadores al campo y, para enfrentar estos nuevos desafíos, se ha apelado a la interdisciplinariedad. Es posible identificar dos dificultades para la consideración de las dimensiones empíricas en bioética: por una parte, los conflictos de poder entre las disciplinas y, por otra parte, la reducción, durante un decenio, de la ética biomédica al principialismo como enfoque particularmente fácil de utilizar por profesionales de la salud enfrentados a dilemas y problemas. En este contexto, la interdisciplinariedad puede parecer una carga. A pesar de estas difi cultades, la intención siempre ha estado presente, aunque a veces ha sido poco visible y más bien silenciosa. En estos últimos años, el giro empírico retoma fuerza y se deben tener en cuenta dos elementos importantes: el rumbo sobre el sentido de la bioética y el necesario diálogo interdisciplinario.

Are 'anonymous' and 'non-directed' prerequisites for living altruistic donation? The views of transplant physicians from France and Québec.

It can be argued that living altruistic donors should remain anonymous and should not express preferences in the selection of organ recipients. This study aimed to describe the views of transplant physicians in France and Québec regarding these issues. A total of 27 French and 19 Québec renal transplant physicians took part in individual, semi-directed interviews. Almost all of the physicians agreed that anonymity is mandatory in living altruistic donation (LAD). Regarding the issue of directed donation, most of the French physicians (78%) were opposed to any form of the practice, compared to only a third of their Québec colleagues (32%). We found that these positions were embedded in their respective cultural, legal and social contexts. These results afford a better understanding of these complex issues in two different cultural contexts, and will be useful in the development of international guidelines for LAD.

Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision?

Parents at risk of delivering a baby at the threshold of viability are faced with a critical decision. When a child is born between 23 and 25 weeks of gestation, parents are asked to decide whether or not to resuscitate their child. In essence, they are faced with a choice between life and death. We conducted a qualitative study to explore how parents and neonatologists engage in decision-making in a context of imminent and unplanned delivery at the threshold of viability. Twelve parents and attending neonatologists in a specialized tertiary care centre in Montreal, Canada were separately interviewed immediately following neonatal consultation. Results highlight how neonatologists and parents engage in decision making from different standpoints: while neonatologists focus on the management of the unborn baby, parents have yet to fully conceptualize their infant as a distinct entity since they are in a process of grieving their pregnancy and their parenthood project. Moreover, in their attempt to ensure an informed decision, neonatologists adopt either of two models through provision of the most up-to-date and objective information available: "remaining as neutral as possible to allow parents to make their own decision", or, "formulating a proposal to which parents can choose or not to assent". Overall, if the provided information fits parents' expectations, they tend to feel confident with their decision. However, if it does not take their experience into account, their decision is experienced as a solitary process. Parents express the need to receive more than just factual information from neonatologists. They also require support and engagement from caregivers to manage the uncertainty. This brings into question the traditional concept of neutral informed consent and suggests the necessity of a shared decision-making model to ensure that the decision to resuscitate extremely premature babies, at the limits of viability, becomes a truly ethical task.

Hyped biomedical science or uncritical reporting? Press coverage of genomics (1992-2001) in Québec.

Genomics integrates the promises and perils of modern biomedical science. Canada and the province of Québec embarked late but aggressively in genomics research based on the 'discourse of promise' in which genomics is embedded. This did not prevent the emergence of a 'discourse of concerns', and debates on the wider meaning of genomics and on the risks related to genomics applications such as gene therapy and gene testing. Given this context, this study aims to understand the evolution of genomics press coverage from the early days up to the publication of the draft sequence of the human genome. Accordingly, we performed a press content analysis on 749 articles reporting genomics research in Québec from 1992 to 2001. We focused on coverage of benefits and ethical issues, tone, and differences in reporting practices between press agencies and journalists. Results show an increasing number of articles, a general decline in the proportion of articles featuring ethical issues, an increased focus on the economy, and greater optimism from 1992 to 2001. In comparison to articles written by journalists, articles signed by press agencies are more optimistic and less often feature ethical issues. Results are discussed following two non-exclusive interpretations: (1) the successes of genomics and its institutionalization in Québec and Canada brought hype and greater social acceptance, and (2) uncritical reporting practices have emerged under pressures for expedient and consumable writing. We are left with two concerns: given worldwide media concentration movements, what are the challenges for the dissemination of diversified and critical information in print media? And, given limited coverage of ethical issues, and concerns about bioethics being too narrowly focused, should public debates on frontier biomedical science be promoted to broaden the scope of biomedical ethics?

Vida, sufrimiento y muerte / Life, suffering and death

La medicina occidental necesita redescubrir el sentido de la vida, del sufrimiento y de la muerte, para ayudar a las personas a abordar el trance mortal preservando su dignidad

Vida, sufrimiento y muerte / Life, suffering and death

La medicina occidental necesita redescubrir el sentido de la vida, del sufrimiento y de la muerte, para ayudar a las personas a abordar el trance mortal preservando su dignidad (AU)