Ethical concerns in caring for persons with anorexia nervosa: content analysis of a series of documentations from ethics consultations.

BACKGROUND: Caring for patients with anorexia nervosa (AN) is associated with high levels of moral distress among healthcare professionals. The main moral conflict has been posited to be between applying coercion to prevent serious complications such as premature death and accepting treatment refusals. However, empirical evidence on this topic is scarce. METHODS: We identified all 19 documentations of ethics consultations (ECs) in the context of AN from one clinical ethics support service in Switzerland. These documentations were coded with a sequential deductive-inductive approach and the code system was interpreted in a case-based manner. Here, we present findings on patient characteristics and ethical concerns. FINDINGS: The ECs typically concerned an intensely pretreated, extremely underweight AN patient endangering herself by refusing the proposed treatment. In addition to the justifiability of coercion, frequent ethical concerns were whether further coerced treatment aimed at weight gain would be ineffective or even harmful, evidencing uncertainty about beneficence and non-maleficence and a conflict between these principles. Discussed options included harm reduction (e.g. psychotherapy without weight gain requirements) and palliation (e.g. initiating end-of-life care), the appropriateness of which were ethical concerns in themselves. Overall, nine different types of conflicts between or uncertainties regarding ethical principles were identified with a median of eight per case. CONCLUSIONS: Ethical concerns in caring for persons with AN are diverse and complex. To deal with uncertainty about and conflict between respect for autonomy, beneficence and non-maleficence, healthcare professionals consider non-curative approaches. However, currently, uncertainty around general justifiability, eligibility criteria, and concrete protocols hinders their adoption.

Position statement of the Brazilian Palliative Care Academy on withdrawing and withholding life-sustaining interventions in the context of palliative care.

The issue of withrawing and withholding life-sustaining interventions is an important source of controversy among healthcare professionals caring for patients with serious illnesses. Misguided decisions, both in terms of the introduction/maintenance and the withdrawal/withholding of these measures, represent a source of avoidable suffering for patients, their loved ones, and healthcare professionals. This document represents the position statement of the Bioethics Committee of the Brazilian Palliative Care Academy on this issue and establishes seven principles to guide, from a bioethical perspective, the approach to situations related to this topic in the context of palliative care in Brazil. The position statement establishes the equivalence between the withdrawal and withholding of life-sustaining interventions and the inadequacy related to initiating or maintaining such measures in contexts where they are in disagreement with the values and care goals defined together with patients and their families. Additionally, the position statement distinguishes strictly futile treatments from potentially inappropriate treatments and elucidates their critical implications for the appropriateness of the medical decision-making process in this context. Finally, we address the issue of conscientious objection and its limits, determine that the ethical commitment to the relief of suffering should not be influenced by the decision to employ or not employ life-sustaining interventions and warn against the use of language that causes patients/families to believe that only one of the available options related to the use or nonuse of these interventions will enable the relief of suffering.

[Palliative care and care for the elderly: Worlds to be reconciled around an ethic of vulnerability]. / Soins palliatifs et soins au grand âge : des univers à réconcilier autour d'une éthique de la vulnérabilité.

The ageing of Western societies is leading to a marked increase in mortality. Death and old age are now intertwined. This situation should be of particular concern to palliative care. But in reality, palliative care remains too inaccessible to the oldest sections of the population. Why this paradox? After reviewing the clinical and organisational reasons that are often given, we invite you to take a more global look, one that is both sociological and ethical.

Ethics and Palliation in Head and Neck Surgery.

Head and neck cancer is a potentially traumatizing disease with the potential to impact many of the functions which are core to human life: eating, drinking, breathing, and speaking. Patients with head and neck cancer are disproportionately impacted by socioeconomic challenges, social stigma, and difficult decisions about treatment approaches. Herein, the authors review foundational ethical principles and frameworks to guide care of these patients. The authors discuss specific challenges including shared decision-making and advance care planning. The authors further discuss palliative care with a discussion of the role of surgery as a component of palliation.

The topic of not initiating resuscitation from the perspective of Czech law not only in the context of palliative care.

In the age of advanced modern medicine, prolonging the lives of patients is becoming easier and easier. Science is even going so far that some authors are beginning to see the need to advocate for the patient's right to die. The authors of the recommended resuscitation procedures themselves state that prolonging the inevitable dying process should be considered a harm (dysthanasia). The issue of not initiating urgent resuscitation is part of not only clinical practice, but also the study of physicians and other health professionals. The various criteria, indications, and contraindications for this action are repeatedly discussed in the course of study and practice, but rarely does this discussion go into significant detail. The teaching is limited to their enumeration or description of some of the more clearly understood ones, which are, for example, certain signs of death and their presence. The terminal stage of an incurable chronic disease is only marginally mentioned as a contraindication to urgent resuscitation, perhaps due to its ethical and legal overlap. The article includes an analysis of the sources of regulation of this issue, focusing mainly on legal and professional sources and their relationship. It also describes the actual process of decision making about the initiation of palliative care, decision making about end-of-life care, including the issue of not initiating urgent resuscitation.

Flourishing at the end of life.

Flourishing is an increasingly common construct employed in the study of human wellbeing. But its appropriateness as a framework of wellbeing at certain stages of life is contested. In this paper, we consider to what extent it is possible for someone to flourish at the end of life. People with terminal illness often experience significant and protracted pain and suffering especially when they opt for treatments that prolong life. Certain aspects of human goods, however, that are plausibly constitutive of flourishing-such as meaning and purpose, deep personal relationships, and character and virtue-can be uniquely realised when life is ending. We argue that there is a qualified sense in which one can flourish at the end of life but that one must make important modifications to the criteria implicit in conventional conceptions of flourishing. We close with a discussion of the empirical assessment of wellbeing at the end of life and explore the possibility of introducing a flourishing measure in palliative care practice.

The ethics of clinically assisted nutrition and hydration in adults and the role of the advanced clinical practitioner.

Clinically assisted nutrition and hydration (CANH) decision-making in adult patients presents complex ethical dilemmas that require careful consideration and navigation. This clinical review addresses the multifaceted aspects of CANH, emphasising the importance of ethical frameworks and the role of advanced clinical practitioners (ACPs) in guiding decision-making processes. The pivotal role of ACPs is highlighted, from their responsibilities and challenges in decision-making to the collaborative approach they facilitate involving patients, families and multidisciplinary teams. The article also explores ethical principles such as autonomy, beneficence, non-maleficence, and justice, elucidating their application in CANH decision-making. Legal and ethical frameworks covering CANH are examined, alongside case studies illustrating ethical dilemmas and resolutions. Patient-centred approaches to CANH decision-making are discussed, emphasising effective communication and consideration of cultural and religious beliefs. End-of-life considerations and palliative care in CANH are also examined, including the transition to palliative care and ethical considerations in withdrawal or withholding of CANH. Future directions for research and implications for clinical practice are outlined, highlighting the need for ongoing ethical reflection and the integration of ACPs in CANH decision-making.

[Palliative neurology]. / Palliativneurologie.

Palliative medicine represents the holistic multiprofessional treatment of severely and incurably ill people and their relatives, addressing their complex physical, psychological, social and spiritual needs. The central therapeutic goals are the quality of life and alleviation of suffering. In the course of many neurological diseases, high symptom burden, long and variable trajectories and unfavorable prognosis at times create a need for palliative care even at an early stage, which is currently still inadequately met. This can be countered by qualified neuropalliative care. In addition to intensifying interdisciplinary collaboration, this requires neurologists to have core competencies in palliative care. These include a team-oriented attitude, communication skills, expertise in symptom control and knowledge of biomedical ethics including palliative options at the end of life.

Nurses' experiences of ethical challenges concerning thirst in dying patients in specialist palliative care: a qualitative study.

AIM: To describe nurses' experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units. RESEARCH DESIGN: A qualitative, reflexive thematic design with an inductive analysis was used. PARTICIPANTS AND RESEARCH CONTEXT: Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. RESULTS: This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members. CONCLUSION: Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process.

Palliative care as a Fundamental Human Right: where are we at in Italy?

Abstract: The right to live with dignity during the final stages of existence, enshrined in national and supranational Charters of Rights, represents a significant step towards humanizing medicine and is integral to the right to health. Palliative Care, rooted in health, dignity, and therapeutic self-determination, has emerged as a fundamental human right and a moral imperative within health systems. It seeks to alleviate suffering, emphasizing the holistic well-being of patients with life-limiting illnes-ses. This paper provides an analysis of the current situation of Palliative Care in Italy and examines its critical aspects, also in relation to the issues found in other European and non-European countries. In Italy, although laws have been enacted to ensure the provision of Palliative Care, its availability remains inconsistent across different regions. Financial constraints and insufficient support hinder the comprehensive dissemination of these services. Recognizing the significance of Palliative Care, the Catholic Church also endorses its implementation as a response to human suffering and an approach to end-of-life care. Efforts to strengthen Palliative Care are critical to meeting the rising demand and ensuring access to compassionate and dignified care for all individuals in need. Through legislative advancements and adequate resources, Italy can make significant strides in advancing the provision of Palliative Care.

Beyond the Question: Reexamining a Parent's Unusual Request.

Pediatricians sometimes think about medical ethics as the field of determining right and wrong in in answering difficult moral questions that occur at the bedside. But an emphasis on rapidly determining right and wrong when faced with ethical dilemmas can lead clinicians to miss important issues underlying both the question and their approach to answering it. We argue that ethical reflection is not merely a process of getting to the right answer but also a way to probe beyond the original question to better understand the stakeholders' perspectives and priorities. In this Ethics Rounds, we present the case of an infant born at 23 weeks' gestation who initially faced numerous complications of prematurity, but has progressed beyond acute critical illness. His father requests a transition to palliative care at a point this option would not typically be offered. The straightforward response to this father's request is "no." However, we reexamine the father's request from the perspective of a neonatologist, a clinical ethicist, and a conflict mediator. Why is the father making this request? Why do clinicians feel rushed to respond? The authors discuss how elements of surprise and implicit biases can push clinicians to hasty answers. We introduce tools used in clinical ethics consultation and conflict mediation that can facilitate alternative responses from the clinical team. Employing the "Ladder of Inference," ascertaining the "View from Everywhere," and differentiating positions from interests can help clinicians explore the context of ethical questions and lead to more fruitful resolutions.

End-of-life Care in the Intensive Care Unit and Ethics of Withholding/Withdrawal of Life-sustaining Treatments.

The medical progress has produced improvements in critically ill patients' survival to early phases of life-threatening diseases, thus producing long intensive care stays and persisting disability, with uncertain long-term survival rates and quality of life. Thus, compassionate end-of-life care and the provision of palliative care, even overlapping with the most aggressive of curative intensive care unit (ICU) care has become crucial. Moreover, withdrawal or withholding of life-sustaining treatment may be adopted, allowing unavoidable deaths to occur, without prolonging agony or ICU stay. Our aim was to summarize the key element of end-of-life care in the ICU and the ethics of withholding/withdrawal life-sustaining treatments.

Assisted dying in Swedish healthcare: a qualitative analysis of physicians' reasoning about physician-assisted suicide.

To explore Swedish physicians' arguments and values for and against physician-assisted suicide (PAS) extracted from the free-text comments in a postal survey. A random selection of approximately 240 physicians from each of the following specialties: general practice, geriatrics, internal medicine, oncology, surgery and psychiatry. All 123 palliative care physicians in Sweden. A qualitative content analysis of free-text comments in a postal questionnaire commissioned by the Swedish Medical Society in collaboration with the Karolinska Institute in Stockholm. The total response rate was 59.2%. Of the 933 respondents, 1107 comments were provided. The free-text comments entailed both normative and factual arguments for and against PAS. The analysis resulted in two main categories: (1) "Safe implementation of PAS is unachievable" (with subcategories "Criteria of PAS difficult to fulfil" and "PAS puts societal norms and values at risk") and (2) "The role of PAS in healthcare" (with subcategories "No medical need for PAS", "PAS is not a task for physicians", "No ethical difference to other end-of-life decisions" and "PAS is in the patient's best interest"). The respondents brought up well-known arguments from academic and public debate on the subject. Comments from physicians against PAS were more often emotionally charged and used devices like dysphemisms and slippery-slope arguments.

For, against, and beyond: healthcare professionals' positions on Medical Assistance in Dying in Spain.

BACKGROUND: In 2021, Spain became the first Southern European country to grant and provide the right to euthanasia and medically assisted suicide. According to the law, the State has the obligation to ensure its access through the health services, which means that healthcare professionals' participation is crucial. Nevertheless, its implementation has been uneven. Our research focuses on understanding possible ethical conflicts that shape different positions towards the practice of Medical Assistance in Dying, on identifying which core ideas may be underlying them, and on suggesting possible reasons for this disparity. The knowledge acquired contributes to understanding its complexity, shedding light into ambivalent profiles and creating strategies to increase their participation. METHODS: We conducted an exploratory qualitative research study by means of semi-structured interviews (1 h) with 25 physicians and nurses from primary care (12), hospital care (7), and palliative care (6), 17 women and 8 men, recruited from Madrid, Catalonia, and Andalusia between March and May 2023. Interviews were recorded, transcribed, and coded in Atlas.ti software by means of thematic and interpretative methods to develop a conceptual model. RESULTS: We identified four approaches to MAiD: Full Support (FS), Conditioned Support (CS), Conditioned Rejection (CR), and Full Rejection (FR). Full Support and Full Rejection fitted the traditional for and against positions on MAiD. Nevertheless, there was a gray area in between represented by conditioned profiles, whose participation cannot be predicted beforehand. The profiles were differentiated considering their different interpretations of four core ideas: end-of-life care, religion, professional duty/deontology, and patient autonomy. These ideas can intersect, which means that participants' positions are multicausal and complex. Divergences between profiles can be explained by different sources of moral authority used in their moral reasoning and their individualistic or relational approach to autonomy. CONCLUSIONS: There is ultimately no agreement but rather a coexistence of plural moral perspectives regarding MAiD among healthcare professionals. Comprehending which cases are especially difficult to evaluate or which aspects of the law are not easy to interpret will help in developing new strategies, clarifying the legal framework, or guiding moral reasoning and education with the aim of reducing unpredictable non-participations in MAID.

Pediatric Palliative Care of a Transgender Adolescent.

A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as they navigated the immense difficulty of a cancer diagnosis and began to understand their child's gender identity. Literature on the care of gender diverse pediatric patients with terminal illness is minimal, but applications from adult literature, and research on supporting gender diverse adolescents more broadly, provided guidance for palliative care, oncology, and gender-affirming care teams. We believe that honoring and supporting the gender identity of adolescents with terminal illness is an essential aspect of end-of-life care. This case report outlines challenges faced by multidisciplinary pediatric team members who provided gender-affirming care for a minor under hospice care and amplifies the need for future research and guidelines pertinent to this patient population.

Palliative Care in the Pediatric Intensive Care Unit.

The purposes of this review are to describe differences between palliative care for adult patients and palliative care for pediatric patients, both generally and in the intensive care unit; to highlight ethical considerations for pediatric intensive care unit patients by using illustrative cases; and to examine the impact of these ethical considerations on decision-making for children and their families.

[Palliative care and legislation]. / Soins palliatifs et législation.

PALLIATIVE CARE AND LEGISLATION. Defined by the circular of August 26, 1986, palliative care is provided to people at the end of life, helping to relieve their suffering. Since the law of June 9, 1999, access to palliative care has been a right of all patients. With a view to alleviating suffering, human resources are mobilized to support the sick person. While human relationships play a central role, technology is also called. Caregivers have a responsibility to provide palliative care, as they are bound by professional ethics. Doctors and nurses have a duty to accompany the dying person to his final moments, ensuring the quality of a life that is coming to an end through appropriate care and measures. They are liable for any breach.

SOINS PALLIATIFS ET LÉGISLATION. Définis par la circulaire du 26 août 1986, les soins palliatifs sont dispensés à des personnes en fin de vie et contribuent au soulagement des souffrances. Depuis la loi du 9 juin 1999, l'accès aux soins palliatifs est un droit des personnes malades. Dans une optique de conjuration de la souffrance, des moyens humains sont mobilisés à travers l'accompagnement de la personne malade. Si les relations humaines occupent une place centrale, la technique est également sollicitée. Les soignants ont une responsabilité dans la délivrance des soins palliatifs, puisque la déontologie les y oblige. Le médecin et l'infirmier ont notamment le devoir d'accompagner le mourant jusqu'à ses derniers moments en assurant, par des soins et mesures appropriés, la qualité d'une vie qui prend fin. Leur responsabilité est engagée en cas de manquement.