"On s'était pourtant mis d'accord avec les enfants : pas d'acharnement". L''acharnement, un sujet on ne peut plus brûlant d'actualité médicale et sociétale.
Dans un service de réanimation où se mêlent technicité, souffrance, guérison, vulnérabilité, espoir et fin de vie, moi infirmière, ne peux plus me défausser face à cette famille qui par ces mots s'exclut, choque, dérange et déstabilise mon équipe.
En cours de formation continue de Soins Palliatifs et d'Accompagnement, il me faut y aller, me risquer, à la rencontre de ces parents qui ne demandent qu'à exister, être entendus, accompagnés.
Qu'a développé en moi, soignante, ce DIU si singulier pour me sentir prête à tenir une présence, tout entendre, et remettre en question ma pratique, mes positions dans des situations toujours plus complexes, humaines et éthiques telles que celles-ci ?
Les concepts d'altérité, transdisciplinarité et pratique réflexive vont m'aider à y répondre...
When should doctors seek protective custody to override a parent's refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25-50%. This is not the case when the treatment in question is open heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40-50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations.
An NHS trust recently agreed a £45 000 settlement with the family of a woman who was given treatment contrary to her advance decision for some 2 years before she died. In this article, Richard Griffith discusses the requirements for a valid applicable advance decision to refuse treatment and a district nurse's duty to record and give effect to the wishes expressed within it.
Doctors are required to notify Child Protective Services (CPS) if parents do not provide appropriate medical care for their children. But criteria for reporting medical neglect are vague. Which treatments properly fall within the realm of shared decision-making in which parents can decide whether to accept doctors' recommendations? Which treatments are so clearly in the child's interest that it would be neglectful to refuse them? When to report medical neglect concerns to CPS may be controversial. It would seem inhumane to allow a child to suffer because of parental refusal to administer proper analgesia. In this ethics rounds, we present a case of an adolescent with chronic pain who is terminally ill. Her parents were not adherent to recommended analgesia regimens. Her palliative care team had to decide whether to report the case to CPS.
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.
This article will explore whether the law should allow people with anorexia nervosa to refuse nutrition and hydration with special reference to the English decision in Re E (Medical Treatment: Anorexia). It argues that the judge in that case made the correct decision in holding that the patient, who suffered from severe anorexia nervosa, lacked capacity to make valid advance directives under the Mental Capacity Act 2005 of the United Kingdom, and that medical procedures that are apparently against her wishes should be carried out for the sake of preserving her life. The law should generally not permit patients with anorexia nervosa to decline nutrition and hydration, precisely because their autonomous ability to make such decisions has been substantially circumscribed by this psychiatric condition.
BACKGROUND: In December 2017, Law 219/2017, 'Provisions for informed consent and advance directives', was approved in Italy. The law is the culmination of a year-long process and the subject of heated debate throughout Italian society. Contentious issues (advance directives, the possibility to refuse medical treatment, the withdrawal of medical treatment, nutrition and hydration) are addressed in the law.
MAIN TEXT: What emerges clearly are concepts such as quality of life, autonomy, and the right to accept or refuse any medical treatment - concepts that should be part of an optimal relationship between the patient and healthcare professionals. The law maximizes the value of the patient's time to decide. Every patient is allowed to make choices for the present (consenting to or refusing current treatment) as well as for the future, conceived as a continuation of the present, and to decide what comes next, based on what he/she already knows. The law identifies three distinct but converging paths towards the affirmation of a care relationship based on reciprocal trust and respect: the possibility to consent to or refuse treatment, the shared care planning, and advance directives.
CONCLUSIONS: The fundamental point to emerge from the new Italian law is that consensus is an essential connotation of the treatment relationship. Consensus is not limited to the acceptance/rejection of medical treatment but is ongoing. It is projected into the future through shared care planning and advance directives which act as tools for self-determination and the manifestation of the beliefs and preferences of persons unable to express their will. These principles are in line with the idea of appropriate care as evaluated from two different perspectives, one of scientific adequacy and the other commensurate with the individual's resources, fragility, values, and beliefs. Surely, however, the new law is not the end of the matter on issues such as conscientious objection, which is deeply rooted within the Italian cultural and political debate. In this regard, healthcare institutions and policymakers will be called upon to develop and implement organizational policies aimed at the management of foreseeable conscientious objection in this field.
Au sommaire de ce dossier : "Représentations des coordinateurs hospitaliers concernant la légitimité des proches à décider d'un don d'organes" - "Le don d'organes : voir au-delà des volontés individuelles ?" - "Limitation et arrêt de thérapeutique (s) active (s) aux urgences" - "Les interruptions médicales de grossesse pour mise en péril grave de la santé de la femme. Analyse de 122 demandes à la clinique Jules-Verne de Nantes de 2005 à 2009 d'un point de vue médical et éthique" - "Face à l'émergence d'une théorie post-humaniste, le rapport au corps et la culture palliative caractérisent-ils l'entrée dans une nouvelle modernité ?" - "Déploiement technologique au XXIe siècle. Enjeux éthiques et implication du soignant et du citoyen".
Origine : BDSP. Notice produite par APHPDOC 8mHFR0xs. Diffusion soumise à autorisation
Certains patients douloureux, en situation palliative, refusent les traitements qui pourraient les soulager par peur d’être somnolents. À partir d’une situation clinique, et en s’appuyant sur un éclairage psychologique et anthropologique, nous tenterons de comprendre comment la somnolence peut devenir un inconfort psychique plus insupportable que la douleur, et ce que cela implique dans les pratiques soignantes, en particulier dans la prise en charge de la douleur.
Le 22 avril 2005, était promulgée la loi "relative aux droits des malades et à la fin de vie". Son examen au Sénat avait été tumultueux, mais le débat à l'Assemblée nationale avait été marqué par une grande sérénité et la volonté de dépasser les oppositions partisanes. Cela mérite d'être relevé et apprécié à sa juste valeur, d'autant que le temps d'élaboration de la loi avait été précédé par une période de profonde émotion collective entretenue par l'intense médiatisation d'un fait divers promu au rang de drame national.
La loi n°99-477 du 9 juin 1999 visant à garantir le droit à l'accès aux soins palliatifs a, pour la première fois, posé explicitement le principe légal selon lequel : "la personne malade peut s'opposer à toute investigation ou thérapeutique". Ce dispositif consacre d'une certaine façon les droits de la personne malade quant à son droit d'accepter ou de refuser des soins médicaux à finalité thérapeutique (la numérotation de ce nouvel article inséré dans le Code de la santé publique est le L 1er C).
[Début de l'article]
Le refus de traitement est un angle de vue pertinent pour comprendre la relation thérapeutique et les principes philosophiques qui la fondent. Suzanne Rameix, philosophe, met en perspective les mutations qui s'opèrent aujourd'hui entre bienfaisance et autonomie, et leur inscription dans la société. Elle envisage une troisième voie à trouver.
The dilemma of patients’ capacity to refuse medical care occurs frequently in inpatient settings and often involves a psychiatric consultation.Though end-of-life decisions are generally considered the realm of palliative care specialists and ethics committees, consultation psychiatrists may play a role in these complex situations as well. Resolving a clinical dilemma that clearly precipitates withdrawal of treatment and patient death, or which results in additional suffering over a patient's objections, may present a moral burden to the psychiatrist tasked with a consult for capacity to refuse treatment.
Background: Chronically ill persons experience conditions of life that can become unbearable, resulting in the wish to end their life prematurely. Relatives confronted with this wish experience ambivalence between loyalty to the person's desire to die and the fear of losing this person. Caring for a person during the premature dying process can be morally challenging for nurses. One way to end one's life prematurely is Voluntary Stopping of Eating and Drinking (VSED).
Methods: This embedded single case study explored the experiences of registered nurses (embedded units of analysis: ward manager, nursing manager, nursing expert) and relatives who accompanied a 49-year-old woman suffering from multiple sclerosis during VSED in a Swiss long-term care institution (main unit of analysis). By means of a within-analysis, we performed an in-depth analysis of every embedded unit of analysis and elaborated a central phenomenon for each unit. Afterwards, we searched for common patterns in a cross-analysis of the embedded units of analysis in order to develop a central model.
Results: The following central concept emerged from cross-analysis of the embedded units of analysis: As a way of ending one's life prematurely, VSED represents an unfamiliar challenge to nurses and relatives in the field of tension between one's personal attitude and the agents' concerns, fears and uncertainties. Particularly significant is the personal attitude, influenced on the one hand by one's own experiences, prior knowledge, role and faith, on the other hand by the VSED-performing person's age, disease and deliberate communication of the decision. Depending on the intention of VSED as either suicide or natural dying, an accepting or dismissing attitude evolves on an institutional and personal level.
Conclusions: To deal professionally with VSED in an institution, it is necessary to develop an attitude on the institutional and personal level. Educational measures and quality controls are required to ensure that VSED systematically becomes an option to hasten death. As VSED is a complex phenomenon, it is necessary to include palliative care in practice development early on and comprehensively. There is a high need of further research on this topic. Particularly, qualitative studies and hypothesis-testing approaches are required.
Objectifs : Evaluer les impacts de refus parentaux de limitation ou arrêt de traitement (refus) en Ile de France, leur fréquence depuis la loi française Claeys-Leonetti, les pratiques.
Matériels et méthodes : Etude régionale multicentrique rétrospective (questionnaires anonymisés) des 15 centres type 3 franciliens de 2016 à 2018.
Résultats : Quatorze centres ont répondu (26 médecins dont 18 femmes). Pour 12 pratiques analysées, les parents étaient prévenus de la réunion collégiale et leur avis connu : consultatif pour 1 centre et 8 refus, systématiquement suivi pour 3 centres et 5 refus, sinon, souvent suivi.
L’incidence était de 1 à 3 refus/an/centre avec 49 causes enregistrées : 22 volontés de vie malgré tout handicap, 20 causes religieuses, 7 manques de confiance. Un 2ème avis a été systématiquement proposé avec : soutien par l’équipe mobile de soins palliatifs, psychologue, représentant de culte, entretiens avec le chef de service, changement de médecin référent, médiateur, deux transferts ; aucune intervention judiciaire. Plusieurs des 64 évaluations du vécu révélaient une détresse morale : culpabilité (20), impuissance/inutilité (15), dépréciation personnelle (6). Dix-huit médecins avaient une capacité de résilience. Cinquante-six
explications des refus étaient données : loi dite difficile d’application (15), peu claire (3), mal expliquée (13), médiatisation de décisions judiciaires (14), évolution de la société (11). Les 51 propositions d’amélioration étaient : un soutien systématique pour les parents (25), leur implication plus grande (12), une meilleure explication de la loi (16).
Conclusion : Première à évaluer les refus de LAT depuis la loi Claeys-Léonetti, cette étude est préliminaire à un observatoire régional.
Although all human beings share the same biology, the political context of medical practice, like all politics, is notoriously local. So, while some might be surprised to learn that Italy only adopted its first advance directive legislation in the closing days of 2017, such surprise would reflect a kind of naive parochialism. Rome, Italy, is not Washington, DC. The bill, which passed the Italian Senate in December 2017 after 3 decades of debate, assumed the force of law on January 6, 2018. The law establishes a right to refuse tests and treatments, a right to palliative care, and provides for living wills and the naming of medical proxies; assisted suicide and euthanasia remain illegal. The protracted legislative course reflects a complex amalgam of culture, religion, language, politics, ethics, and medicine.
Souvent éthiquement complexes, les situations de fin de vie peuvent confronter les équipes soignantes au refus de soins. Au travers d’une situation clinique représentative, un infirmier éclaire l’accompagnement déployé en équipe pluridisciplinaire, à domicile, pour entendre le souhait d’une personne en fin de vie, soutenir ses proches, anticiper les difficultés possibles et organiser une prise en charge adaptée et respectueuse de tous.
BACKGROUND: Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing the patient; (d) lack of a reasonable alternative; (e) independent second physician's opinion. 'Unbearable suffering' must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees (RTE). The purpose of this study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder.
METHODS: The 416 case summaries available on the RTE website (2012-2016) were searched for intellectual disability (6) and autism spectrum disorder (3). Direct content analysis was used on these nine cases.
RESULTS: Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient's perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis.
CONCLUSIONS: Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS. The Dutch EAS due care criteria are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards.
A 3-month-old boy with failure to thrive was referred to a nephrology clinic after a diagnostic workup for failure to thrive revealed a serum urea nitrogen level of 95 mg/dL and creatinine level of 3.6 mg/dL. A renal ultrasound revealed marked bilateral hydronephrosis with little remaining renal cortex in either kidney. A voiding cystourethrogram revealed evidence of posterior urethral valves. The child had no evident comorbidities. Fulguration of the valves was successfully performed but did not lead to improvement in kidney function. The nephrologists recommended the initiation of dialysis with the hope that the child would be able to receive a kidney transplant in the future. After careful consideration, the family stated that they did not want this child to suffer with a lifetime of dialysis and transplant care. They were also concerned about the impact of this child's illness on their other 2 children and their family. They requested that their son be provided with palliative care only. Experts in nephrology, bioethics, and critical care discuss the ethical issues raised by this parental request.
Treatment and management of cancers in elderly patients require some special considerations. A better understanding of how cancers progress in those elderly patients who have not received any anticancer treatments could better help us in treating these patients and in making end-of-life decisions. Over the past years, we had encountered 57 elderly patients, aged 75 to 94 years (87.6 on average), with a cancer in the digestive system, who refused to accept anticancer treatment but who did receive the best available supportive and palliative care. Clinicopathological data of these patients were analyzed. Of these 57 cases, 49 were at an advanced or late stage, while the remaining eight were at an early stage at the time of diagnosis. The median overall survival time of all the patients was 11 months, and almost the entire cohort manifested multiple-organ impairments. The average number of malfunctioning organs per patient was 3.68. After carefully predicting, and then preventing or managing complications, only 54.4% of the patients eventually died of multiple-organ functional failure. Nearly 18% of the single organ dysfunctions were finally well-controlled. Our data provide the first statistical information on the survival time and the direct cause of death of the elderly patients with a cancer in the digestive system not treated with chemotherapy or other direct anticancer interventions, but who did receive the best available supportive and palliative cares. During their struggle with cancer, elderly patients clearly could benefit from prophylactic interventions on organ dysfunction.