NICE (National Institute for Health & Care Excellence) guidance recommends that healthcare professionals with expertise in palliative care should be an integral part of the multidisciplinary team in managing patients with motor neuron disease (MND). Those in the poorest prognostic group may benefit from early referral to help manage rapidly progressive symptoms, psychological distress and offer additional support with complex decision-making and early robust advance care planning. Patients frequently develop dysphagia and gastrostomy feeding can be used to prolong survival and improve quality of life. As the disease progresses patients may request withdrawal of life-sustaining treatment such as gastrostomy feeding; however, a literature search found no evidence or guidance on how best to facilitate this. We present the case of a patient with MND admitted to the hospice inpatient unit requesting withdrawal of gastrostomy feeding, outline the challenges and need for further consensus guidelines to inform practice.
One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child's short life had a profound impact on the author's career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today. It also contributed to the growth of the modern bioethics movement and scholarship focused on pediatric bioethics issues.
OBJECTIVE: We aimed to determine how often patients who choose voluntary stopping of eating and drinking (VSED) are accompanied by Swiss family physicians, how physicians classify this process, and physicians' attitudes and professional stance toward VSED.
METHODS: We conducted a cross-sectional study between August 2017 and July 2018 among 751 practicing family physicians in Switzerland (response rate 74%; 70.7% men; average age 58 (±9) years). We used a standardized evidence-based questionnaire for the survey.
RESULTS: VSED is well-known among family physicians (81.9%), and more than one-third (42.8%) had accompanied at least one patient during VSED. In 2017, 1.1% of all deaths that occurred in Swiss nursing homes or in a private home were owing to VSED. This phenomenon was classified as a natural dying process (59.3%), passive euthanasia (32.0%), or suicide (5.3%).
CONCLUSIONS: Although about one in three Swiss family physicians have accompanied a person during VSED, family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process. Further training and development of practice recommendations are needed to achieve more standardized accompaniment of VSED.
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
Voluntarily stopping eating and drinking is a means of hastening death. Unlike euthanasia or medical aid in dying, which are available only in certain jurisdictions and with assistance from health care
professionals, the ability to die by voluntarily stopping eating and drinking is determined by ongoing patient choice, although clinical and caregiver support is recommended. Few studies have examined the incidence of
patients choosing to stop eating and drinking; studies in the Netherlands and United States suggest patients hoosing this route have concerns about both physical and existential suffering. This article presents an
overview of voluntarily stopping eating and drinking, including guidance for clinicians, legal permissibility, and ethical discussions about whether the act constitutes suicide and how clinicians might respond to requests for information or support.
This issue of Medical Clinics, guest edited by Dr. Eric Widera, is devoted to Palliative Care. Articles in this important issue include: Hospice and palliative care: an overview; Goals of care conversations in palliative care: A practical guide; The art and science of prognostication in palliative care; Recognizing and managing polypharmacy in advanced illness; Pain management in those with serious illness; Management of grief, depression, and suicidal thoughts in those with serious illness; Management of respiratory symptoms in those with serious illness; Management of gastrointestinal symptoms inadvanced illness; Management of urgent medical conditions at the end of life; Delirium at the end of life; Options of last resort: palliative sedation, Physician aid in dying and voluntary cessation of eating and drinking; Cannabis for symptom management; and Self-care of physicians caring for patients with serious illness.
Le refus de soins interroge les soignants à titre individuel et collectif. Il demande d’être expliqué et compris car il peut s’agir d’une forme d’expression chez certains patients. Ces situations difficiles nécessitent d’avoir une attitude adéquate et notamment de cultiver un travail en équipe pour que soignant et soigné se sentent reconnus et respectés.
Bien que prévu par la loi et quels qu’en soient les motifs, le refus de soins émanant du patient déstabilise les soignants. Pour ces derniers, il est important de comprendre les attitudes vis-à-vis de ce refus, les liens avec les pratiques professionnelles afin de proposer des repères pour une démarche clinique.
Durant les trois dernières décennies, l’évolution des prises en charge médicales et la réorganisation de notre système de santé ont totalement modifié les rapports entre les professionnels de santé, les patients et leurs proches. La demande de participation des patients à la démarche de soins a été croissante, posant la question de la liberté de choix des malades et questionnant de plus en plus les domaines où celle-ci serait niée.
Face au refus de soins, l’infirmier doit s’interroger. En effet, le consentement du patient est essentiel et doit être recherché. Dans le cas contraire, quelle est la responsabilité de l’infirmier ? Tout dépend des situations qui sont envisagées par la loi.
PURPOSE OF REVIEW: I review ethical and legal challenges for end of life (EOL) care in dementia. Is access to hospice care for dementia patients impacted by Medicare's terminal prognosis requirement? Are dementia-specific advance directives warranted? How does state legislation affect dementia patients' EOL options? Should dementia patients' be able to refuse orally ingested food and fluids by advance directive?
RECENT FINDINGS: The difficulty of predicting time to death in dementia inhibits access to Medicare hospice benefits. Efforts have been made to create dementia-specific advance directives. Advance refusal of artificial nutrition and hydration are common, but the issue of oral ingestion of food and fluids by dementia patients remains controversial. Medicare's hospice benefit should be made more accessible to dementia patients. State advance directive threshold definitions should be broadened to include dementia, and capacitated persons who refuse in advance orally ingested food and fluids should have their choices honored.
AIMS OF THE STUDY: To analyse medical end-of-life decision making among the oldest old (80+ years) in Switzerland, focusing not only on treatments withheld or withdrawn but also on those continued until death.
METHODS: This was a retrospective follow-up study of deaths registered in Switzerland between August 2013 and January 2014 using a standardised questionnaire completed by the attending physician. All individuals aged 65 years and older who did not die suddenly and completely unexpectedly, and who had met the responding physician prior to death were included (n = 2842). We examined three age groups: 65–79, 80–89, and 90+ years. Logistic regression analysis was used to identify age-related differences, controlled for place of death and sociodemographic characteristics.
RESULTS: In 83.8% of the study population at least one medical end-of-life decision was made, and for 39.4% the use of a potentially life-sustaining treatment was documented. Alleviation of pain and other symptoms with a possible life-shortening effect was performed with 29% higher odds among the 90+-year-olds (odds ratio [OR] 1.29, 95% confidence interval [CI] 1.01–1.66) than in the youngest age group. Withholding or withdrawing potentially life-sustaining treatment with or without the explicit intention to hasten death did not differ with age. However, when the frequency of withholding a potentially life-sustaining treatment was compared with the frequency of using this treatment (either continued until death or withdrawn later on), the former was more common in old age (80–89 years), and particularly in very old age (90+ years) for most of the treatments studied. This applied especially for ventilator therapy (80–89 years: OR 2.83, 95% CI 1.82–4.41; 90+ years: OR 6.17, 95% CI 2.89–13.17, compared with 65–79 years), artificial nutrition (ORs 2.33, 95% CI 1.46–3.71 and 4.44, 95% CI 2.28–8.65, respectively), and antibiotics (ORs 1.53, 95% CI 1.11–2.09 and 1.57, 95% CI 1.05–2.35, respectively). Age had no independent impact on artificial hydration.
CONCLUSIONS: The use of some potentially life-sustaining treatments decreased with older age and, in relation, the relative frequency of withholding such treatments increased. There may be various reasons for this finding: less benefit of a particular treatment in older patients for instance due to comorbidities, higher burden of treatment, and finally a tacit consensus of physicians and patients that death is nearing.
"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".
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