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.

[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.

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.

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 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.

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.

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 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.

Implementing a formal curriculum on surgical ethics and palliative care for otolaryngology residents.

OBJECTIVE: Residents are faced with ethical issues every day but most residency curriculums do not routinely include formal ethics skills training. In order to address this, a comprehensive curriculum on ethics and surgical palliative care was implemented for otolaryngology residents. METHODS: An 8-h ethics didactics curriculum was designed in collaboration with our institution's Institute of Ethics. Varied strategies were used to cover basic principles and practical skills. Anonymous assessments were completed by learners at 3 points during the curriculum on a 5-point scale. RESULTS: Nine residents were surveyed. Prior to the curriculum, a large majority of residents (85 %) expressed little to no familiarity with basic ethical principles. There was statistically significant improvement in understanding of and familiarity with bioethics topics, including the four principles of bioethics (Δ = 2.4, p = 0.004). There was also statistically significant improvement in comfort with the implementation of ethical decision making and palliative care skills, including with difficult conversations with patients (Δ = 1.3, p = 0.03). Participation in sessions was excellent with positive qualitative feedback. CONCLUSION: An interactive curriculum in ethics and palliative care can be engaging and practical for busy surgical residents, with measurable improvement in comfort with challenging cases and ethical, patient-centered care.

Social media for palliative and end-of-life care research: a systematic review.

BACKGROUND: Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to identify the uses of social media in PEoLC studies and to examine the ethical considerations and data collection approaches raised by this research approach. METHODS: Nine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications. RESULTS: 21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed. CONCLUSIONS: Social media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.

A Moratorium on the Euphemism MAID.

It is essential for high-quality health care for providers to adhere to the principle of truth telling, speaking with clarity and honesty. The euphemism medical aid in dying, MAID, is being mainstreamed in the medical literature by proponents of physician-assisted suicide and euthanasia. This trend is deleterious because MAID's proponents do not consistently express the meaning and intent of the practice, and the phrase downplays the fact that a provider is participating in the act of death for a patient. The euphemism blurs the differences between providing high-quality palliative care and participating in the death of a patient prior to a natural death. Some believe the term MAID is used exclusively for assisted suicide in patients with a terminal diagnosis with less than 6 months to live, when in fact it is being used for both assisted suicide and euthanasia and for patients who have no terminal diagnosis with potentially years to live. We are calling up on our colleagues to cease the use of this and other euphemisms in this ethically controversial practice. We recommend standardized language that accurately denotes the context and process. Provider Assisted Death by Prescription (PAD-P) and Provider Assisted Death by Administration (PAD-A) are terms that most accurately describe the process, taking into account who is prescribing or administering a lethal substance and the outcome of the actions. Literature that addresses this practice should be described as ending life literature. The standardized language needs to be used on death certificates so we can most accurately assess the impact that provider-assisted death is having on society. Emphasizing truth telling in morally controversial practices will foster trust among health care providers and with patients.

Cuestiones bioéticas involucradas en los Cuidados Paliativos: desde la perspectiva de los profesionales de la salud / Bioethical issues involved in Palliative Care: from the perspective of health professionals

Las cuestiones inherentes al final de la vida constituyen un inmenso desafío para los médicos, debido a la falta de educación formal en lo inherente a cuidados paliativos, y a que se entrelazan conceptos médicos, religiosos, legales y bioéticos en su abordaje. El objetivo de este estudio es identificar, desde la perspectiva de los profesionales de la salud, las cuestiones éticas involucradas en el proceso de atención de pacientes incluidos en cuidados paliativos. Para ello se llevó a cabo de una revisión de 10 artículos, en los cuales se observa la carencia de formación bioética y la aplicación inadecuada (o falta) en lo inherente a manejo adecuado de la información y la dificultad en su comunicación, toma de decisiones compartidas, respeto de la autonomía del paciente, verdad médica, limitación de esfuerzos terapéuticos (AU)

End-of-life issues constitute an immense challenge for physicians, due to the lack of formal education regarding palliative care, and the intertwining of medical, religious, legal, and bioethical concepts in their approach. The objective of this study is to identify, from the perspective of health professionals, the ethical issues involved in the care process for patients included in palliative care. For this, a review of 10 articles was carried out, in which the lack of bioethical training and the inadequate application (or lack) is observed in terms of the proper management of information and the difficulty in its communication, decision making shared, respect for patient autonomy, medical truth, limitation of therapeutic efforts (AU)

End-of-life practices: An ethical framework for clinicians.

Most hospitalized patients die following a decision to forgo life-sustaining treatment and/or focus on comfort care. Since "Do not kill" is a general ethical norm, many healthcare professionals (HCPs) are uncertain or troubled by such decisions. We propose an ethical framework to help clinicians to understand better their own ethical perspectives about four end-of-life practices: lethal injections, the withdrawal of life-sustaining therapies, the withholding of life-sustaining therapies, and the injection of sedatives and/or analgesics for comfort care. This framework identifies three broad ethical perspectives that may permit HCPs to examine their own attitudes and intentions. According to moral perspective A (absolutist), it is never morally permissible to be causally involved in the occurrence of death. According to moral perspective B (agential), it may be morally permissible to be causally involved in the occurrence of death, if HCPs do not have the intention to terminate the patient's life and if, among other conditions, they ensure respect for the person. Three of the four end-of-life practices, but not lethal injection, may be morally permitted. According to moral perspective C (consequentialist), all four end-of-life practices may be morally permissible if, among other conditions, respect for persons is ensured, even if one intends to hasten the dying process. This structured ethical framework may help to mitigate moral distress among HCPs by helping them to understand better their own fundamental ethical perspectives, as well as those of their patients and colleagues.

Considerações éticas relacionadas às condutas terapêuticas de pacientes terminais / Ethical considerations related to the therapeutic management of terminally ill patients / Consideraciones éticas relacionadas con la conducta terapéutica de los pacientes terminales

Objetivo: Conhecer as considerações éticas relacionadas às condutas terapêuticas das equipes de saúde frente aos pacientes terminais. Metodologia: Trata-se de um estudo exploratório de natureza qualitativa. Realizado no período de dezembro de 2020, através do acesso ao Banco de Teses e Dissertações da CAPES, considerando que este, coordena o Sistema de Pós-graduação brasileiro. Resultados: Foram identificadas seis classes semânticas, de modo que a mesma formulou a seguinte distribuição de contextos temáticos: Classe 1 Paciente terminal; Classe 2 Condutas médicas; Classe 3 Manejo terapêutico; Classe 4 Protocolos clínicos e aspectos metodológicos dos estudos; Classe 5 Dependências metodológicas e Classe 6 Suporte clínico na terminalidade Dependências metodológicas. Discussão: A morte e a vida tornam-se um impasse enfrentado pelos profissionais de saúde, pois existem fatores decisivos na vida de cada paciente em situação terminal com nenhuma esperança de cura, envolvendo assim questões éticas. Conclusão: Portanto, torna-se necessário que as instâncias de saúde assegurem protocolos, treinamentos e aporte psicológicos para esses profissionais que atuam diretamente com pacientes em situações terminais de vida, para que possa haver uma ressignificação do processo de cuidado com pacientes e segurança na tomada de decisões por parte dos profissionais de saúde, e assim possa preservar a ética.

Objective: To know the ethical considerations related to the therapeutic behavior of health teams towards terminal patients. Methodology: This is an exploratory study of a qualitative nature. Carried out in January 2020, through access to the CAPES Theses and Dissertations Bank, considering that it coordinates the Brazilian Postgraduate System. Results: Six semantic classes were identified, so that it formulated the following distribution of thematic contexts: Class 1 Terminal patient; Class 2 Medical conducts; Class 3 Therapeutic management; Class 4 Clinical protocols and methodological aspects of the studies; Class 5 Methodological dependencies and Class 6 Clinical support in terminality Methodological dependencies. Discusson: Death and life become an impasse faced by health professionals, as decisive there are factors in the life of each patient in a terminal situation with no hope of cure, thus involving ethical issues. Conclusion: Therefore, it is necessary that health institutions ensure protocols, training and psychological support for these professionals who work directly with patients in terminal situations, so that there can be a new meaning for the process of patient care and safety in decision-making by health professionals, and thus can preserve ethics.

Objetivo: Conocer las consideraciones éticas relacionadas con las conductas terapéuticas de los equipos de salud frente a los pacientes terminales. Metodología: Se trata de un estudio exploratorio de carácter cualitativo. Realizado en el período de diciembre de 2020, a través del acceso al Banco de Tesis y Disertaciones de la CAPES, considerando que este, coordina el Sistema de Pós-graduación brasileño. Resultados: Se identificaron seis clases semánticas, por lo que se formuló la siguiente distribución de contextos temáticos: Clase 1 Paciente terminal; Clase 2 Conductas médicas; Clase 3 Manejo terapéutico; Clase 4 Protocolos clínicos y aspectos metodológicos de los estudios; Clase 5 Dependencias metodológicas y Clase 6 Apoyo clínico en la terminalidad Dependencias metodológicas. Discusión: La muerte y la vida se convierten en un impasse al que se enfrentan los profesionales de la salud, porque hay factores decisivos en la vida de cada paciente en situación terminal sin esperanza de curación, lo que implica cuestiones éticas. Conclusión: Por lo tanto, se hace necesario que las instancias de salud garanticen protocolos, capacitación y apoyo psicológico para estos profesionales que trabajan directamente con los pacientes en situaciones de vida terminal, para que pueda haber una resignificación del proceso de atención al paciente y seguridad en la toma de decisiones por parte de los profesionales de la salud, y así poder preservar la ética.

Ethical challenges in palliative sedation of adults: protocol for a systematic review of current clinical practice guidelines.

INTRODUCTION: This study aims to identify the full spectrum of ethical challenges of all forms of palliative sedation for adults as presented in current clinical practice guidelines (CPGs) and to determine whether CPGs specify ethical challenges of this therapy for patients with cancer and non-cancer and, if so, how exactly they do this. To the best of our knowledge, no studies have yet investigated this topic. The purpose is purely descriptive; our aim is not to make any kind of normative judgements on these challenges. Nor is our aim to assess the quality of the CPGs. METHODS AND ANALYSIS: We will perform a systematic review of CPGs on palliative sedation for adults via five electronic databases, grey literature search tools, citation tracking and contact with palliative care experts. Current CPGs accredited by an international, national or regional authority, published in English, German, French, Italian or Polish, from 2000 to the date of the search, will be subjected to content analysis at the textual, linguistic and thematic levels. ETHICS AND DISSEMINATION: This is a protocol for a systematic review and no human will be involved in this research. Therefore, ethics approval and consent to participate are not applicable to this context. This study protocol is reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis for Protocols criteria and registered on PROSPERO. Moreover, the integral version of this study protocol is published as a preprint on Research Square. The results of this study will be actively disseminated through peer-reviewed journals and books, international, national and local conference presentations, social media and media in general.

Barriers to and facilitators of ethical encounters at the end of life in a nursing home: an ethnographic study.

BACKGROUND: Among a growing population of older persons, many affected by multiple diseases and complex needs, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses and frail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this study was to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situations at the end of life in a nursing home. METHODS: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in an urban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of fieldwork, including participant observation and interviews. Observations and digitally recorded interviews were analysed thematically. Five public community stakeholders contributed to the analysis by discussing preliminary results and clinical implications in a focus group. RESULTS: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodily care, were identified: Coping with the impact of workplace demands; Interacting in dialogue and communication; Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort. CONCLUSIONS: The findings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriers included lack of resources, ineffective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility for performing their tasks in response to residents' vulnerability. We therefore suggest that moral deliberation over issues of communication, compassion, decision-making, and behavior, with particular consideration for the care relationship. To further improve the quality of care, organisations must provide resources for the building of relationships, as well as time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation of ethically grounded palliative care.