Ce numéro de la revue est consacré à la philosophie de terrain définie comme rapport entre réalité et pensée et comme spécificité de l’activité philosophique. Sont abordés la revendication contemporaine d’une philosophie impliquée, une philosophie de terrain en lien avec la pensée canguilhémienne des normes individuelles, l’accompagnement de la fin de vie ou encore la recherche en éthique clinique.
The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.
BACKGROUND: Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice.
AIM: To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective.
METHOD: A case study based on an anthropological field study among patients with advanced cancer in Denmark.
ETHICAL CONSIDERATIONS: Followed the principles of the Helsinki Declaration.
FINDINGS: Two cases illustrated situations where nurses refused patient involvement in their own case.
DISCUSSION: Focus on two ethical issues, namely 'including patients' experiences in palliative nursing care' and 'relational distribution of power and knowledge', inspired primarily by Hannah Arendt's concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients' palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned 'thoughtlessness' of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients' invitations to involve them in their own case.
CONCLUSION: The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that 'thoughtlessness' appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses' ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare.
I had been on the phone with Madeleine's mother for fifteen minutes, and she had sobbed throughout. She pleaded with me, "You won't even let our family visit her together. If you really want to help my daughter, you will let us stay with her." Madeleine, who was twenty-four years old, was dying of end-stage acute myeloid leukemia and was intubated in one of our intensive care units. Her intensivist had requested a clinical ethics consultation for potentially inappropriate medical treatment-in my world of clinical ethics consultation, routine stuff. Except that, in March 2020, nothing was routine anymore. The Covid-19 pandemic calls for creative thinking about ad hoc and post hoc bereavement efforts, and it may result in efforts to revise existing accounts of what constitutes a good death in order to accommodate patients' and families' experiences at the end of life during a pandemic.
In a field that strives to care for patients and families together, what can palliative care clinicians do when patients' families are physically absent? The Covid-19 pandemic has put both literal and figurative walls between health care professionals and families. How health care workers respond to these disconnections might have a lasting impact on patients, on families, and on our practice. Recently, I saw this in the case of a patient our palliative care team was consulted to see. Mr. B was minimally responsive and dying from multisystem organ failure of unclear etiology. As in other cases during this pandemic, our team became a facilitator of interaction between the patient and the physically absent family, seeing an intimacy we normally would not, in this case, by being present while our intern held the phone to Mr. B's ear for an end-of-life call from his wife, son, and daughter. Such moments force us clinicians to be even more present for our families and patients, and they allow us to bear witness to the strength and sadness and love that we might otherwise miss.
There is a concern that as a result of COVID-19 there will be a shortage of ventilators for patients requiring respiratory support. This concern has resulted in significant debate about whether it is appropriate to withdraw ventilation from one patient in order to provide it to another patient who may benefit more. The current advice available to doctors appears to be inconsistent, with some suggesting withdrawal of treatment is more serious than withholding, while others suggest that this distinction should not be made. We argue that there is no ethically relevant difference between withdrawing and withholding treatment and that suggesting otherwise may have problematic consequences. If doctors are discouraged from withdrawing treatment, concern about a future shortage may make them reluctant to provide ventilation to patients who are unlikely to have a successful outcome. This may result in underutilisation of available resources. A national policy is urgently required to provide doctors with guidance about how patients should be prioritised to ensure the maximum benefit is derived from limited resources.
Dans l’histoire de notre société, les progrès de la médecine, sur fond de paternalisme hippocratique, conduisent à des avancées considérables comme à des expérimentations de l’homme sur l’homme. Après le code de Nuremberg en 1947, l’autonomie s’impose. Le profane, en particulier le patient, revendique sa place au sein de la décision médicale. En découlent des conflits de valeurs entre acharnement thérapeutique et euthanasie. L’auteur explore ici la démarche éthique clinique menée en unité de soins palliatifs qui tente de répondre à certaines situations complexes en fin de vie. Par une approche sociologique et une introduction à la recherche, nous croisons le vécu de huit acteurs. L’un des points forts qui ressort est une dysrythmie temporelle, entre unicité et routine, temps et durée, que la démarche éthique tente de synchroniser.
The COVID-19 pandemic and its sequelae have created scenarios of scarce medical resources, leading to the prospect that healthcare systems have faced or will face difficult decisions about triage, allocation and reallocation. These decisions should be guided by ethical principles and values, should not be made before crisis standards have been declared by authorities, and, in most cases, will not be made by bedside clinicians. Do not attempt resuscitation (DNAR) and withholding and withdrawing decisions should be made according to standard determination of medical appropriateness and futility, but there are unique considerations during a pandemic. Transparent and clear communication is crucial, coupled with dedication to provide the best possible care to patients, including palliative care. As medical knowledge about COVID-19 grows, more will be known about prognostic factors that can guide these difficult decisions.
In view of the exceptional public health situation caused by the COVID-19 pandemic, a consensus work has been promoted from the ethics group of the Spanish Society of Intensive, Critical Medicine and Coronary Units (SEMICYUC), with the objective of finding some answers from ethics to the crossroads between the increase of people with intensive care needs and the effective availability of means. In a very short period, the medical practice framework has been changed to a 'catastrophe medicine' scenario, with the consequent change in the decision-making parameters. In this context, the allocation of resources or the prioritization of treatment become crucial elements, and it is important to have an ethical reference framework to be able to make the necessary clinical decisions. For this, a process of narrative review of the evidence has been carried out, followed by a unsystematic consensus of experts, which has resulted in both the publication of a position paper and recommendations from SEMICYUC itself, and the consensus between 18 scientific societies and 5 institutes/chairs of bioethics and palliative care of a framework document of reference for general ethical recommendations in this context of crisis.
The goal of this paper is to introduce the false hope harms (FHH) argument, as a new concept in healthcare. The FHH argument embodies a conglomerate of specific harms that have not convinced providers to stop endorsing false hope. In this paper, it is submitted that the healthcare profession has an obligation to avoid collaborating or participating in, propagating or augmenting false hope in medicine. Although hope serves important functions-it can be 'therapeutic' and important for patients' 'self-identity as active agents'- the presentation of false hope along the hope continuum entails a misconstrued balancing act. By not speaking up against unrealistic patient and family requests-including some requests for rights to try, resuscitative efforts in terminally ill patients, or other demands for non-beneficial treatments-healthcare providers precipitate harms, i.e., the FHH. These harms arise on both individual and communal levels and cannot be ignored. The goal of this paper is not to offer a definition of false hope, because the phenomenon of false hope is too complex for any simple definition. Instead, this paper seeks to make four points while outlining the FHH argument: consumer medicine and false hope are connected; providers and patients are very vulnerable in the system of consumer medicine; providers have a responsibility to stand up against false hope; and how the FHH argument could perhaps offer a footing to resist giving in to false hope.
The education and clinical application of ethics specific to interventional radiology (IR) is relatively underdeveloped. Beyond palliative care ethics, the underrepresentation of clinical ethics in IR could be due to the way by which it is often presented, because it is frequently viewed in terms of abstract principles and sensational cases rather than how it applies to interventional radiologists’ daily practice. Despite its relative under recognition, ethics is important to all professional groups; it is the collective values that guide our behaviors and allow us to resolve challenging situations that are common in health care.
BACKGROUND: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have been conducted to evaluate clinical ethics support services near the end of life.
METHODS: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241.
ETHICAL CONSIDERATIONS: Ethical approval is not needed as it is a systematic review of published literature.
RESULTS: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results.
CONCLUSION: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services.
I analyze the insights present in Elisabeth Kübler-Ross's seminal work, On Death and Dying that have laid the foundation for contemporary clinical bioethics as it is practiced by clinical ethics consultants. I highlight the landmark insight of Elisabeth Kübler-Ross that listening to dying patients reveals their needs and enables them to enjoy a better death. But more important for contemporary clinical ethics is that the text highlights three tensions that the clinical ethicist must navigate but can never truly resolve. Clinical ethicists must balance: (1) the need to hear the patient's voice with the temptation to overly medicalize the case, (2) helping the patient achieve a better death with enabling the patient to die in the way he or she chooses, and (3) keeping professional distance with engaging the patient in a way that respects the intimacy of the patient's disclosures.
At times, clinical expertise may not be sufficient to find a way out of a moral impasse, especially in the context of end-of-life and organ transplantation decisions. Advances in medical knowledge and technology, and highly pluralistic and multicultural societies, have led to the emergence of new ethical problems in daily clinical practice along with the need to manage them in a prompt and effective manner. Clinical ethics developed in the late 1970s and early 1980s in North American health care contexts with the aim of identifying, analyzing, and attempting to resolve ethical conflicts and dilemmas at the patient's bedside. At present, only a few regions in Italy have established clinical ethics committees, and Italy may count on a very small number of clinical ethics services fully devoted to ethics case consultation, guidelines development, and the education of health care providers and citizens. Despite this situation, one has to acknowledge both the increasing request for ethics support coming from health care providers who experience an "ethical vacuum" in the Italian health care system and the cultural change that is affecting Italy nowadays. By highlighting clinical examples and sharing experiences, we show and encourage the potential benefits of establishing clinical ethics services in Italian health care contexts.
L’inclusion dans les essais précoces provoque de nombreux questionnements d’un point de vue pratique, mais aussi éthique. L’objectif de ce travail est de montrer que ces enjeux dépassent largement la simple ouverture d’un essai et l’inclusion d’un enfant dont la pathologie correspond aux critères.
Patients often affirm the goal to pursue comfort at the end of life, although clinicians may struggle with how best to provide comfort and face the ethical dilemma of treating or allowing a suspected infection to unfold. Treating an infection at the end of life does not allow for uniform improvement in symptoms and more time with family and friends. Additionally, there is potential for burden to the patient or health care system and treatment may occur to the exclusion of other comfort measures. Currently, the practice of providing or forgoing antibiotics at the end of life is variable, and literature supporting best practices can be contradictory. Data to support the use or withholding of treatment have been scant and vary across settings and patient populations. We review common obstacles providers face, prognostication tools that may assist in clinical decision making, the ethical support for withholding therapy, and how to factor in potential burdens of treatment. We propose that nurses, whether at the bedside in an acute care or nursing facility or in the home setting as a member of the interdisciplinary home hospice team, are uniquely qualified to help patients and families navigate this challenging clinical decision.
Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta-ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients' personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.
During an initial palliative care assessment, a dying man discloses that he had killed several people whilst a young man. The junior doctor, to whom he revealed his story, consulted with senior palliative care colleagues. It was agreed that legal advice would be sought on the issue of breaching the man's confidentiality. Two legal opinions conflicted with each other. A decision was made by the clinical team not to inform the police. In this article the junior doctor, the palliative medicine specialist, a medical ethicist, and a lawyer consider the case from their various perspectives.
CONTEXT: Patients in medical intensive care units (MICUs) are medically complex. This complexity can lead to uncertainty about patient goals and prognosis. Ethical dilemmas arise when there is uncertainty about the clinically and ethically appropriate actions for managing seriously ill patients. Ethics and palliative care involvement may promote improved quality of care and reduced staff moral distress.
Project Description: In this clinical project, a physician with ethics, palliative care, and geriatrics expertise attended morning rounds with the MICU team weekly. Data on the logistics and impact from the first 2 years of the project were collected. Project Logistics and Preliminary Impact: Rounds lasted approximately 1.75 hours per week. The rounder was present for discussion of approximately 200 patients per year and made comments on nearly half of the patients. The comments were categorized as 25% ethics, 40% palliative care, 10% geriatrics, and 25% a combination or other topic. Attending physicians rated the project as helpful. The number of ethics and palliative care consults from the MICU increased in the first 2 years. Downstream impact has included a dietician reviewing Physician Orders for Life Sustaining Treatment forms with teams throughout the hospital and routine review of advance directives of newly admitted patients.
DISCUSSION: Weekly MICU rounding provides an opportunity to briefly teach staff and trainees about relevant ethics, palliative care, and geriatrics issues. It also provides a forum for discussion of ethically challenging cases. Considerations when starting a similar program are discussed.
BACKGROUND: Withdrawal of life support for an individual with refractory schizophrenia after attempted suicide remains controversial. Discussion regarding prognosis of mental illness and the distinction between somatic and mental illness brings out many ethical issues. This article will examine the role and weight of severe persistent mental illness in the withdrawal of life support after attempted suicide.
CASE DESCRIPTION: A 30-year-old gentleman with deafness and schizophrenia was admitted with multiple self-inflicted visceral stab wounds. He developed postoperative complications necessitating ongoing critical care. The parties involved were as follows: the patient, his parents, the critical care trauma service, the palliative and psychiatry consult services, and the ethics committee. Over the patient's hospital course, his parents struggled to reconcile his poor preinjury quality of life with his ongoing need for intensive medical intervention. The primary and consulting teams were required to integrate differing perspectives on the patient's past responsiveness to treatment and the extent to which additional efforts might advance his quality of life and limit his future suffering and suicidality. The patient's surrogate decision makers unanimously requested withdrawal of life support. An ethics committee convened to address the question of whether refractory schizophrenia can produce so poor a quality of life as to merit the withdrawal of life-sustaining measures after a suicide attempt. Consensus was achieved, and life-sustaining measures were subsequently withdrawn, allowing the patient to pass away peacefully in an inpatient hospice facility.