Ce livre fournit des repères réflexifs sur les pratiques soignantes pour les acteurs du soin, les formateurs et les étudiants dans un contexte où de nombreuses questions éthiques ont émergé.
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Dans les situations de fin de vie, une procédure collégiale peut être initiée. Elle vise à prendre ou pas une décision médicale de limitation ou d’interruption de traitement ou de non-prise en compte des directives anticipées. Pour cela, il faut recueillir l’avis de l’équipe de soins en charge du patient et celui, motivé, d’au moins un médecin consultant.
La mort d’un patient en situation palliative sous opioïde génère parfois un fort sentiment de culpabilité. « Ai-je précipité le décès du patient avec mon traitement opioïde ? » Bien que la littérature soit très claire quant à la sécurité des opioïdes utilisés correctement pour la gestion de la dyspnée ou de la douleur en soins palliatifs, il se peut que, dans certaines situations, on puisse en douter. Le médecin, face à sa crainte de nuire en administrant des opioïdes, pourrait être tenté de sous-traiter le patient, au risque de l’abandonner à sa souffrance. D’un autre côté, l’impuissance face à l’intensité de la souffrance du patient pourrait amener le médecin à vouloir le soulager à tout prix, au risque d’un geste euthanasiant. Cet article propose un aperçu du principe du double effet, comme élément de réponse à ce dilemme éthique.
Should indication for transfusion in paediatric palliative care be based on the child's perspective rather than the biological results? An 8-year-old boy presenting a relapse of a stage IV neuroblastoma received regular blood transfusions. A severe exophtalmia led the doctors to question the transfusion strategy. Over 7.5 months, the child received 56 red blood cell units and 31 platelet units. He was hospitalised 50 times. Indication for blood test and transfusion may be regularly and collegially reassessed. Transfusion needs in a palliative strategy can be as high as in a curative strategy. Practices, benefits but also ethical and public health dimensions should be more studied.
Introduction : De nos jours 16 % des patients morts à l’hôpital décèdent aux urgences ou dans l’unité d’hospitalisation de courte durée. De fait, la décision de limitations et/ou d’arrêts des thérapeutiques actives (LATA) est souvent prise aux urgences. Les droits des malades concernant la fin de vie ont été renforcés en 2016 par la Loi Caeys-Leonetti. Notre étude a pour but d’évaluer les modalités et le contexte de la mise en place des LATA aux urgences du CHU d’Amiens afin de savoir si ces pratiques sont conformes aux recommandations et si le cadre réglementaire en est bien respecté.
Méthode : Il s’agit d’une étude observationnelle rétrospective descriptive au sein du service des urgences du CHU d’Amiens du 01 avril 2015 au 30 juin 2019. Ont été inclus les dossiers des patients ayant consulté aux urgences et pour lesquels un questionnaire de mise en place de LATA a été rempli.
Résultats : Cinq cent trois dossiers au total ont été inclus. La quasi-totalité des dossiers (99,8 %) comportaient le nom du médecin référent. De même, les décisions de LATA étaient prises de manière collégiale avec au moins un autre médecin dans la majorité des dossiers (93,2 %). En revanche, la personne de confiance n’était mentionnée que dans deux tiers des dossiers (67,3 %) et l’équipe paramédicale n’était mentionnée que dans un tiers des dossiers (34,1 %).
Conclusion : La mise en place d’un questionnaire relatif aux LATA dans le dossier médical favorise une prise en charge collégiale aux urgences. Ces décisions restent perfectibles, les 2 principaux points d’amélioration sont l’identification et l’information de la personne de confiance ainsi que la traçabilité de la consultation de l’équipe paramédicale dans les dossiers.
Rassemblant les compétences d'experts, qui dialoguent avec celles et ceux qui travaillent chaque jour dans l'accompagnement, ce recueil examine les problèmes éthiques et pratiques soulevés notamment par le surconfinement des personnes âgées et dépendantes durant la pandémie, les risques de "glissement" suscités par les mesures de protection sanitaire, la restriction ou l'interdiction du toucher lors des visites, les modifications du regard porté sur le grand âge.
Professional values reflect nurses' understanding of how to deliver professional care, which might influence nurses' attitudes and caring behaviors during end-of-life care. However, limited research has been conducted to explore nurses' experiences of professional development during end-of-life care, and theoretical explanations are scarce about how nurses enact their professional values during the caring process. This study explored the social process of professional values involved in end-of-life care in the Chinese cultural context by adopting a constructivist grounded theory approach. Twenty semi-structured in-depth interviews among 15 nurses from three hospitals in southeastern China were conducted. A theoretical framework emerged when focusing on the social process of "reframing the meaning of life and professional values" to facilitate professional care for dying patients. Three main categories were sequentially identified as "recognizing the dilemmas when caring for dying patients," "applying strategies to deal with values conflict," and "reconstructing values." This theoretical framework may be applied as a practical framework for equipping nurses with effective strategies to cultivate professional values, including the provision of adequate end-of-life knowledge, and a supportive workplace environment.
Public health emergencies such as pandemics can put health systems in a position where they need to ration medical equipment and interventions because the resources available are not sufficient to meet demand. In public health management, the fair allocation of resources is a permanent and cross-sector issue since resources, and especially economic resources, are not infinite. During the COVID-19 pandemic resources need to be allocated under conditions of extreme urgency and uncertainty. One very problematic aspect has concerned intensive care medicine and age discrimination has been among the most hotly discussed issues, as age has been touted as a probable criterion for selection. In this paper we analyse some documents originating from scientific societies and medical associations, mainly related to EU sphere and available in English, French, Spanish and Italian (Switzerland, Spain, Belgium, France, England and Italy), concerning the criteria for admission to the intensive care units. We highlights how, in most of these documents, it is explicitly stated that “age itself” is not a criterion for patient selection. Our conclusion is that these criteria should be defined in advance of a crisis situation and be grounded in clinical indicators. Establishing “cut-off” policies with regard to criteria such as age or chronic disability is definitely an unjustifiable form of discrimination even in the context of a public health emergency.
An 87-year-old man with nonischemic cardiomyopathy, an implantable cardioverter defibrillator (ICD), and stage IV renal cell carcinoma presented to the emergency department with fever. On arrival, his temperature was 103 °F, his heart rate 120 beats per minute, and his blood pressure 80/56 mm Hg. His laboratory results were notable for a white blood cell count of 16 000/µL (to convert to ×109/L, multiply by 0.001) and urinalysis showing leukocyte esterase, nitrites, and bacteria. His condition initially improved with volume resuscitation and treatment with ceftriaxone and was admitted with sepsis presumed secondary to a urinary source. On admission, the patient reported that he had previously signed an out-of-hospital do-not-resuscitate (DNR) order and that he wanted to continue his DNR status while hospitalized.
Objective: To identify sociodemographic and clinical factors associated with withholding or withdrawing life-sustaining treatment (WWLST) for extremely low gestational age neonates.
Design: Observational study of prospectively collected registry data from 19 National Institute of Child Health and Human Development Neonatal Research Network centres on neonates born at 22–28 weeks gestation who died >12 hours through 120 days of age during 2011–2016. Sociodemographic and clinical factors were compared between infants who died following WWLST and without WWLST.
Results: Of 1168 deaths, 67.1% occurred following WWLST. Withdrawal of assisted ventilation (97.4%) was the primary modality. WWLST rates were inversely proportional to gestational age. Life-sustaining treatment was withheld or withdrawn more often for non-Hispanic white infants than for non-Hispanic black infants (72.7% vs 60.4%; 95% CI 1.00 to 1.92) or Hispanic infants (72.7% vs 67.2%; 95% CI 1.32 to 3.72). WWLST rates varied across centres (38.6–92.6%; p<0.001). The centre with the highest rate had adjusted odds 4.89 times greater than the average (95% CI 1.18 to 20.18). The adjusted odds of WWLST were higher for infants with necrotiing enterocolitis (OR 1.77, 95% CI 1.21 to 2.59) and severe brain injury (OR 1.98, 95% CI 1.44 to 2.74).
Conclusions: Among infants who died, WWLST rates varied widely across centres and were associated with gestational age, race, ethnicity, necrotiing enterocolitis, and severe brain injury. Further exploration is needed into how race, centre, and approaches to care of infants with necrotiing enterocolitis and severe brain injury influence WWLST.
On March 11, 2020 the World Health Organization classified COVID-19, caused by Sars-CoV-2, as a pandemic. Although not much was known about the new virus, the first outbreaks in China and Italy showed that potentially a large number of people worldwide could fall critically ill in a short period of time. A shortage of ventilators and intensive care resources was expected in many countries, leading to concerns about restrictions of medical care and preventable deaths. In order to be prepared for this challenging situation, national triage guidance has been developed or adapted from former influenza pandemic guidelines in an increasing number of countries over the past few months. In this article, we provide a comparative analysis of triage recommendations from selected national and international professional societies, including Australia/New Zealand, Belgium, Canada, Germany, Great Britain, Italy, Pakistan, South Africa, Switzerland, the United States, and the International Society of Critical Care Medicine. We describe areas of consensus, including the importance of prognosis, patient will, transparency of the decision-making process, and psychosocial support for staff, as well as the role of justice and benefit maximization as core principles. We then probe areas of disagreement, such as the role of survival versus outcome, long-term versus short-term prognosis, the use of age and comorbidities as triage criteria, priority groups and potential tiebreakers such as 'lottery' or 'first come, first served'. Having explored a number of tensions in current guidance, we conclude with a suggestion for framework conditions that are clear, consistent and implementable. This analysis is intended to advance the ongoing debate regarding the fair allocation of limited resources and may be relevant for future policy-making.
BACKGROUND: This paper investigates the content of Australian policies that address withholding or withdrawing life-sustaining treatment to analyse the guidance they provide to doctors about the allocation of resources.
METHODS: All publicly available non-institutional policies on withholding and withdrawing life-sustaining treatment were identified, including codes of conduct and government and professional organization guidelines. The policies that referred to resource allocation were isolated and analysed using qualitative thematic analysis. Eight Australian policies addressed both withholding and withdrawing life-sustaining treatment and resource allocation.
RESULTS: Four resource-related themes were identified: (1) doctors' ethical duties to consider resource allocation; (2) balancing ethical obligations to patient and society; (3) fair process and transparent resource allocation; and (4) legal guidance on distributive justice as a rationale to limit life-sustaining treatment.
CONCLUSION: Of the policies that addressed resource allocation, this review found broad agreement about the existence of doctors' duties to consider the stewardship of scarce resources in decision-making. However, there was disparity in the guidance about how to reconcile competing duties to patient and society. There is a need to better address the difficult and confronting issue of the role of scarce resources in decisions about life-sustaining treatment.
Advance directives allow people to accept or decline medical interventions and to appoint surrogate decision makers if they become incapacitated. Living wills are written in ambiguous terms and require interpretation by clinical providers. Living wills cannot cover all conceivable end-of-life decisions. There is too much variability in clinical decision making to make an all-encompassing living will possible. While there are many limitations of advance directives, this article reviews some of the most troublesome ethical dilemmas with regard to advance directives.
OP is a 59 year old female who presents to the emergency room in respiratory distress. Her COVID-19 polymerase chain reaction test was positive, as was her SARS-CoV-2 IgM antibody screen. As she was hypoxic (room air oxygen saturation: 89%), she was admitted for further treatment.
BACKGROUND: The COVID-19 pandemic has aggressively reached the most vulnerable, not only the elderly but also patients with chronic conditions such as cancer. In this study, we present the outlines of ethical thinking and the measures implemented to try to respect our basic values of care, in the specific environment of an oncology hospital.
METHODS: Our ethics committee created an ethical watch system based on 24/7 shifts to assist practitioners in their daily decisions. We discuss the challenges faced by patients with cancer during the pandemic, such as access to critical care and ethical dilemmas in the context of resource scarcity, as well as the issue of isolation of patients. We also debate the restrictions in access to oncology care in a health context strongly 'prioritised' against COVID-19.
RESULTS: In all areas of an ethical dilemma, either for sorting out access to critical care or for the dramatic consequences of prolonged isolation of patients, our common thread was our attempt to protect, whenever possible, the principles of deontological ethics by strictly resisting utilitarian pressure. Respecting democratic health decision-making processes is a cornerstone of ethically relevant decisions, including in the context of a sanitary crisis.
CONCLUSION: The role of an ethics committee related to real-life situations includes not only a reflexive perspective in respect of fundamental principles, but also the help to enlighten and resolve ethical dilemmas in complex clinical situations. This ethical watch team assists physicians in decision-making, promoting the supportive and palliative dimension of care with a holistic approach.
Background: Critical care physicians often have to make challenging decisions to withhold/withdraw life-sustaining treatments. As a result of society's increasingly cultural diversity such decision making often involves patients from ethnic minority groups, which might pose extra challenges.
Objective: To investigate withholding/withdrawing life-sustaining treatments with patients from ethnic minority groups and their families during critical care.
Design: Ethnographic fieldwork (observations, in-depth interviews and reading patients' medical files).
Setting/Subjects: Eighteen patients from ethnic minority groups, their relatives, physicians and nurses were studied in one intensive care unit of a multi-ethnic urban hospital (Belgium).
Results: During decision making physicians had a very central role. The contribution of patients and nurses was limited, while families' input was more noticeable. Decision making was hampered by communication difficulties between: (1) staff and relative(s), (2) relatives, and (3) patient and relative(s). Different approaches were used by physicians to overcome difficulties, which often reflected their tendency to control decision making, for example, stressing their central role. At times their approaches reflected their inability to align families' wishes with their own, for example, when making decisions without explicitly informing relatives.
Conclusions: Withholding/withdrawing life-sustaining treatments in a multi-ethnic critic care context has a number of alarming difficulties, such as how to take families' input correctly into account. It is important that decision making happens in a cultural sensitive way and with involvement tailored to patients' and relatives' needs and in close consultation with interprofessional health care workers/other services.
Background: To characterize patients dying in a community hospital with or without attempting cardiopulmonary resuscitation (CPR) and to describe patient involvement in, documentation of, and compliance with decisions on resuscitation (Do-not-attempt-to-resuscitate orders; DNAR).
Methods: ll patients who died in Kalmar County Hospital during January 1, 2016 until December 31, 2016 were included. All information from the patients’ electronic chart was analysed.
Results: Of 660 patients (mean age 77.7 ± 12.1 years; range 21–101; median 79; 321 (48.6%) female), 30 (4.5%) were pronounced dead in the emergency department after out-of-hospital CPR. Of the remaining 630 patients a DNAR order had been documented in 558 patients (88.6%). Seventy had no DNAR order and 2 an explicit order to do CPR. In 43 of these 70 patients CPR was unsuccessfully attempted while the remaining 27 patients died without attempting CPR. In 2 of 558 (0.36%) patients CPR was attempted despite a DNAR order in place. In 412 patients (73.8%) the DNAR order had not been discussed with neither patient nor family/friends. Moreover, in 75 cases (13.4%) neither patient nor family/friends were even informed about the decision on code status.
Conclusions: In general, a large percentage of patients in our study had a DNAR order in place (88.6%). However, 27 patients (4.3%) died without CPR attempt or DNAR order. DNAR orders had not been discussed with the patient/surrogate in almost three fourths of the patients. Further work has to be done to elucidate the barriers to discussions of CPR decisions with the patient.
Background: This study examined the experience of withholding or withdrawing life-sustaining treatment in patients hospitalized in the intensive care units (ICUs) of a tertiary care center. It also considers the role that intensivists play in the decision-making process regarding the withdrawal of life-sustaining treatment.
Methods: We retrospectively analyzed the medical records of 227 patients who decided to withhold or withdraw life-sustaining treatment while hospitalized at Ewha Womans University Medical Center Mokdong between April 9 and December 31, 2018.
Results: The 227 hospitalized patients included in the analysis withheld or withdrew from life-sustaining treatment. The department in which life-sustaining treatment was withheld or withdrawn most frequently was oncology (26.4%). Among these patients, the most common diagnosis was gastrointestinal tract cancer (29.1%). A majority of patients (64.3%) chose not to receive any life-sustaining treatment. Of the 80 patients in the ICU, intensivists participated in the decision to withhold or withdraw life-sustaining treatment in 34 cases. There were higher proportions of treatment withdrawal and ICU-to-ward transfers among the cases in whom intensivists participated in decision making compared to those cases in whom intensivists did not participate (55.9% vs. 4.3% and 52.9% vs. 19.6%, respectively).
Conclusion: Through their participation in end-of-life discussions, intensivists can help patients' families to make decisions about withholding or withdrawing life-sustaining treatment and possibly avoiding futile treatments for these patients.
Les infirmiers peuvent apporter une aide à la décision dans les situations d’urgence lors d’un choc septique, notamment si le malade n’a pas rédigé de directives anticipées et/ou désigné une personne de confiance. Ils peuvent entreprendre ou faciliter la collégialité des décisions nécessaires sur le plan juridique et éthique. Les habitus d’une équipe à la réflexion éthique et au recueil de données initial sont les garants du respect de la parole du patient.
The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient's ability to benefit from treatment and to survive are first-order considerations. However, there is debate about what clinical measures should be used to make that determination and about other factors that might be ethically appropriate to consider. In this paper, we discuss resource allocation and several related ethical challenges to the healthcare system and society, including how to define benefit, how to handle informed consent, the special needs of pediatric patients, how to engage communities in these difficult decisions, and how to mitigate concerns of discrimination and the effects of structural inequities.