BACKGROUND: In the last two decades, nursing authors have published ethical analyses of palliative sedation-an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care.
RESEARCH AIM: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses' moral identities are portrayed within this literature.
RESEARCH DESIGN: We reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher's Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors' portrayal of the nursing role.
FINDINGS: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses' proximity to patients and families in end-of-life care.
DISCUSSION AND CONCLUSION: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples' moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation.
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.
METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.
RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.
CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.
The opportunity for a critically ill patient to be an organ donor depends on a complex interplay of factors (the Donation Process), one of which is the treating medical team's perspective of the importance and priority of donation during end-of-life care. Medical providers frequently are hesitant to administer treatments to preserve organ function in patients whose death is imminent for fear of invoking a conflict of interest. The basis of the perceived conflict is that organ donation is a process done for the sole benefit of organ transplant recipients and not for the donor, and therefore care directed toward donation prior to death is not for the donor patient's benefit. In this report, it is argued that the Donation Process is indeed a patient-centered process for the potential organ donor, and that organ donation serves the donor's best interests. In addition, key elements of the Donation Process are described.
The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgments were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion. Innovations in medical treatment and technological advances raise issues for all those involved in the care of children and young people especially when decisions need to be made about end of life care. Healthcare professionals have a moral and legal obligation to determine when treatment should cease in cases where it is determined to be futile. The aim should be to work collaboratively with parents but all decisions must be made in the best interests of the child. However, medical staff and parents may have differing opinions about care decisions. In part, this may be as a result of their unique relationships with the child and different understanding of the extent to which the child is in discomfort or can endure pain.
All articles in May 2019's special issue of Bioethics offer profound insights into the issue of "being a burden to others" in relation to wishes to die, which are highly relevant for ethical debates about end-of-life care and physician-assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon "being a burden" in relation to wishes to die and we will show how this analysis could benefit from a care ethical approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of "being a burden" therefore needs to take institutional and societal norms and structures into account, in addition to first-person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon "being a burden" as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on "being a burden" in relation to the practice of physician-assisted dying in the Netherlands.
L’objectif de l’étude était de décrire les pratiques des obstétriciens français face au choix des parents de poursuivre la grossesse après l’annonce d’une pathologie fœtale de particulière gravité, non curable. L’étude était une étude descriptive, transversale et nationale par questionnaires anonymes. La majorité des obstétriciens n’ont pas de formation spécifique en soins palliatifs ou éthique et ne disposent pas d’un protocole encadrant ces prises en charge, mais jugent ce document utile. Les obstétriciens jouent un rôle important dans ces situations.
Background: Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare professionals whether the decision to resuscitate at the limit of viability (intensive care versus comfort care) are influenced by the way information on incurred risks is given or received.
Methods: This is a prospective randomized controlled study. This study evaluated the attitude of healthcare professionals by testing the effect of information given through graphic fact sheets formulated either optimistically or pessimistically. The written educational fact sheet included three graphical presentations of survival and complication/morbidity by gestational age. The questionnaire was submitted over a period of 4 months to 5 and 6-year medical students from the Geneva University as well as physicians and nurses of the neonatal unit at the University Hospitals of Geneva. Our sample included 102 healthcare professionals.
Results: Forty-nine responders (48%) were students (response rate of 33.1%), 32 (31%) paediatricians (response rate of 91.4%) and 21 (20%) nurses in NICU (response rate of 50%). The received risk tended to be more severe in both groups compared to the graphically presented facts and current guidelines, although optimistic representation favoured the perception of “survival without disability” at 23 to 25 weeks. Therapeutic attitudes did not differ between groups, but healthcare professionals with children were more restrained and students more aggressive at very low gestational ages.
Conclusion: Written information on mortality and morbidity given to healthcare professionals in graphic form encourages them to overestimate the risk. However, perception in healthcare staff may not be directly transferable to parental perception during counselling as the later are usually naïve to the data received. This parental information are always communicated in ways that subtly shape the decisions that follow.
L'auteur pose que la capacité à se reconnaître comme vulnérable concerne la personne dans son ensemble. Il met l'accent sur le fait que le corps, celui du malade ou celui du soignant, est au coeur de nombreux enjeux.
Cet ouvrage veut aider l’infirmière à mieux faire face aux enjeux éthiques auxquels elle est confrontée dans sa pratique. Prenant en compte les aspects sociaux et systémiques du domaine de la santé, et s’appuyant autant sur des principes éthiques reconnus que sur des études récentes, cette 2e édition permet d’analyser et de comprendre les problèmes éthiques pour, ultimement, poser des actions réfléchies.
[Extrait résumé éditeur]
Ce livre décrit les fondements de l’éthique du soin et des situations qui nourriront la réflexion des professionnels de la santé qui, au quotidien, cherchent à relier le sens et le concret de l’action, à garder le cap de la perspective soignante.
Les soignants sont formés à agir et à se situer au sein d'une relation par nature asymétrique. L'auteure s'attache à montrer l'importance d'un aspect laissé dans l'ombre : la possibilité de faire vivre cette relation dans une dynamique de réciprocité. Nous avons généralement l'habitude de considérer la relation de soin dans sa structure asymétrique : d'un côté un soignant agissant, responsable, et de l'autre, un patient, passif, vulnérable.
C'est oublier de considérer toute la complexité de ce qui s'échange et se partage entre soignants et soignés. En privilégiant une mise en mot proche de son expérience d'infirmière en soins palliatifs, l'auteure formule les enjeux éthiques de la réciprocité, liés à cette façon de concevoir la relation dans l'activité du soin et de la vivre effectivement.
For many patients, notably among elderly nursing home residents, no plans about end-of-life decisions and palliative care are made. Consequently, when these patients experience life-threatening events, decisions to withhold or withdraw life-support raise major challenges for emergency healthcare professionals. Emergency department premises are not designed for providing the psychological and technical components of end-of-life care. The continuous inflow of large numbers of patients leaves little time for detailed assessments, and emergency department staff often lack training in end-of-life issues. For prehospital medical teams (in France, the physician-staffed mobile emergency and intensive care units known as SMURs), implementing treatment withholding and withdrawal decisions that may have been made before the acute event is not the main focus. The challenge lies in circumventing the apparent contradiction between the need to make immediate decisions and the requirement to set up a complex treatment project that may lead to treatment withholding and/or withdrawal. Laws and recommendations are of little assistance for making treatment withholding and withdrawal decisions in the emergency setting. The French Intensive Care Society (Société de Réanimation de Langue Française, SRLF) and French Society of Emergency Medicine (Société Française de Médecine d'Urgence, SFMU) tasked a panel of emergency physicians and intensivists with developing a document to serve both as a position paper on life-support withholding and withdrawal in the emergency setting and as a guide for professionals providing emergency care. The task force based its work on the available legislation and recommendations and on a review of published studies.
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.
BACKGROUND: In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient's quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients' and their relatives' needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life.
AIM: The aim of this study was to explore nurses' experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care.
RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis.
ETHICAL CONSIDERATIONS: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study.
FINDINGS: A main theme and four subthemes emerged. The main theme was "Deep co-creative relationships are needed to manage ethical and existential issues at the end of life." A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care.
DISCUSSION: Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses' ethical competence within this context.
CONCLUSION: The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients' perspective.
This article, prompted by an extended essay published in the Journal of Medical Ethics by Charles Foster, and the current controversy surrounding the case of Vincent Lambert, analyses the legal and ethical arguments in relation to the withdrawal of life-sustaining treatment from patients with prolonged disorders of consciousness. The article analyses the legal framework through the prism of domestic law, case-law of the European Court of Human Rights and the Convention on the Rights of Persons with Disabilities, and examines the challenge to the ethical consensus made by Foster. It concludes that the right approach remains a version of the approach that has prevailed for the last 25 years since the decision in Airedale NHS Trust v Bland AC 789, refined to reflect that that there is now, and rightly, a much more limited place for judgments made about the 'burden' of treatment or the quality of life enjoyed by the person made on the basis of assumptions about that person as a category as opposed to investigation of that person as an individual human being.
Palliative care (PC) names as one of its central aims to prevent and relieve suffering. Following the concept of "total pain", which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient's psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide (PAS), or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers' efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS.
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.
BACKGROUND: Multilevel uncertainty exists in the treatment of devastating brain injury and variation in end-of-life decision-making is a concern. Cognitive and emotional doubt linked to making challenging decisions have not received much attention. The aim of this study was to explore physicians´ doubt related to decisions to withhold or withdraw life-sustaining treatment within the first 72h after devastating brain injury and to identify the strategies used to address doubt.
METHOD: Semi-structured interviews were conducted with 18 neurocritical care physicians in a Norwegian trauma centre (neurosurgeons, intensivists and rehabilitation specialists) followed by a qualitative thematic analysis.
RESULT: All physicians described feelings of doubt. The degree of doubt and how they dealt with it varied. Institutional culture, ethics climate and individual physicians´ values, experiences and emotions seemed to impact judgements and decisions. Common strategies applied by physicians across specialities when dealing with uncertainty and doubt were: 1. Provision of treatment trials 2. Using time as a coping strategy 3. Collegial counselling and interdisciplinary consensus seeking 4. Framing decisions as purely medical.
CONCLUSION: Decisions regarding life-sustaining treatment after devastating brain injury are crafted in a stepwise manner. Feelings of doubt are frequent and seem to be linked to the recognition of fallibility. Doubt can be seen as positive and can foster open-mindedness towards the view of others, which is one of the prerequisites for a good ethical climate. Doubt in this context tends to be mitigated by open interdisciplinary discussions acknowledging doubt as rational and a normal feature of complex decision-making.
Twenty years ago, the passage of the Oregon Death with Dignity Act prompted vigorous debate in my bioethics classrooms; now, the issue barely generates a ripple. Instead, we focus on an issue my students' generation will confront, as illustrated by an amendment to the ODDA introduced in the last Oregon legislative session that would have effectively rescinded two core procedural safeguards: patient decision-making capacity when requesting life-ending medication and self-administration of the medication. Patient requests for medication could be stipulated on an advance directive that appoints an "expressly identified agent" authorized, in the event of loss of decision-making capacity, "to collect and to administer to the patient the prescribed medication." The amendment heralds a shift from physician-assisted death to medical aid in dying and from prescriptions ingested by patients to life-ending medication administered by a physician or even by the patient's "agent." This prospect generates a bit more angst amongst my students, but their acculturation in the ethics of individual choice prevails. Our discussion about the ethics of medical aid in dying inescapably turns to a deeper issue: is there a professional ethos independent of autonomy?