Reflexiones éticas desde la experiencia práctica de la crisis COVID-19 / Ethical reflections from the practical experience of the COVID-19 crisis

El objetivo de este artículo es realizar una reflexión ética en base a documentos generados durante la pandemia por COVID-19, aportando conclusiones sobre lo aprendido y lo que nos falta por aprender. Se desarrollarán seis áreas de acción: priorización de los recursos, consulta presencial y telemedicina, la (des)protección de los profesionales, la atención en los centros de mayores, la respuesta social y la atención en los últimos días. Ante la falta de recursos, la autoridad pública puede establecer criterios que limiten, sin suprimirlo, el derecho a la protección de la salud de algunos. Se puede justificar la asignación según la capacidad de recuperación del paciente, sin discriminar por edad o discapacidad. Las consultas telemáticas ayudan a mantener la relación clínica, pero requieren de tiempo y entrenamiento. La relación clínica tiene exigencias deontológicas, y requiere mejorar la tecnología y las habilidades de relación telemática. La metáfora bélica y del heroísmo genera presión y confusión sobre el alcance del deber, ante la grave desprotección sufrida por los profesionales. Se debe realzar el valor de la interdependencia y la responsabilidad, no "romantizar" el riesgo, y compensar a los profesionales y sus familias. En las residencias de mayores predominan grandes centros, organizados por tareas, con poca autonomía y privacidad. Debemos decidir qué modelos queremos, y podemos pagar, y qué riesgos compartidos asumimos desde valores comunes. La sociedad civil puede responder a las crisis (democracia es "gobierno del pueblo", que debe protagonizar la vida pública, no los políticos). El acompañamiento al morir son derechos reconocidos. Su limitación excepcional no puede ser una privación total. La planificación anticipada requiere hablar de los miedos y los valores con los pacientes y sus familias. Es un proceso deliberativo que debemos recuperar en la era de la COVID-19

The aim of this article was to conduct an ethical reflection based on documents generated during the COVID-19 pandemic, providing conclusions about what has been learned and what we still have to learn. Six areas of action will be developed: prioritization of resources, face-to-face consultation and telemedicine, (un)protection of professionals, care in nursing homes, social response, and last days care. Facing lack of resources, public authority can establish criteria that limit the right to health protection. The allocation can be justified according to the patient's ability to recover, without discriminating by age or disability. Telematic consultation can keep patient-clinician relationship, but requires time and training. The clinical relationship has deontological requirements, and requires improving technology and telematic communication skills. The war metaphor generates pressure and confusion over the scope of duty in the face of the serious lack of protection suffered by professionals. The value of interdependence and responsibility must be enhanced, not "romanticizing" the risk, and compensating professionals and their families. Nursing homes in our country are predominantly large centers, organized by tasks, with little autonomy and privacy. We must decide which models we want and can afford, and which shared risks we assume from common values. Civil society can respond to crises (democracy is the "government of the people", which must begin in public life, not in politicians. Accompaniment at death is a recognized right). Exceptional limitation of resources cannot be total deprivation. Advanced care planning requires talking about fears and values with patients and their families. It is a deliberative process we must recover in the COVID-19 era

Moral identity and palliative sedation: A systematic review of normative nursing literature.

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.

How Moral Case Deliberation Supports Good Clinical Decision Making.

In clinical decision making, facts are presented and discussed, preferably in the context of both evidence-based medicine and patients' values. Because clinicians' values also have a role in determining the best courses of action, we argue that reflecting on both patients' and professionals' values fosters good clinical decision making, particularly in situations of moral uncertainty. Moral case deliberation, a form of clinical ethics support, can help elucidate stakeholders' values and how they influence interpretation of facts. This article demonstrates how this approach can help clarify values and contribute to good clinical decision making through a case example.

Sedación Paliativa y Eutanasia / Palliative Sedation and Euthanasia

La enfermedad terminal a lo largo de su curso presenta numerosos síntomas y tratamientos sintomáticos, cuyo objetivo es paliar el dolor y mejorar el bienestar y la calidad de vida del paciente. Entre esos tratamientos se encuentra la sedación paliativa, cuyo objetivo es aliviar el sufrimiento en los últimos días u horas de vida. Aparte de la sedación paliativa encontramos en algunos países, y cuan-do el paciente lo decide, la eutanasia, que pone fin a la vida del paciente ter-minal con su consentimiento para poder darle la muerte digna que desea. El presente trabajo pretende mostrar la diferencia entre ambos conceptos y los criterios médicos y éticos en los que se basan, además de conocer la situación actual de nuestro país y del resto de Europa con respecto la eutanasia

The terminal illness along its course presents numerous symptoms and symptomatic treatments, whose objective is to alleviate pain and improve the well-being and quality of life of the patient. Among those treatments is the palliative sedation, which aims to relieve suffering in the last days or hours of life. Apart from the palliative sedation we find in some countries, and when the patient decides it, euthanasia, which puts an end to the life of the terminal patient with his consent to be able to give him the dignified death he desires. The present work aims to show the difference between both concepts and the medical and ethical criteria on which they are based, as well as to know the current situation of our country and the rest of Europe regarding euthanasia

Ethics of crisis sedation: questions of performance and consent.

This paper focuses on the practice of injecting patients who are dying with a relatively high dose of sedatives in response to a catastrophic event that will shortly precipitate death, something that we term 'crisis sedation.' We first present a confabulated case that illustrates the kind of events we have in mind, before offering a more detailed account of the practice. We then comment on some of the ethical issues that crisis sedation might raise. We identify the primary value of crisis sedation as allowing healthcare professionals to provide some degree of reassurance to patients, their families and the professionals who are caring for them. Next we focus on the issue of informed consent. Finally, we ask whether continuous deep sedation might be preferable to crisis sedation in scenarios where potential catastrophic events can be anticipated.

Continuous Deep Sedation and Euthanasia in Pediatrics: Does One Really Exclude the Other for Terminally Ill Patients?

Debates on morally acceptable and lawful end-of-life (EOL) practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death (CDS). We demonstrate that this reasoning is based on flawed assumptions: (1) CDS is a morally preferable alternative to euthanasia; (2) CDS can meet the same patient needs as euthanasia; (3) children lack the capacity and experience to make EOL decisions; (4) unlike euthanasia, CDS does not raise capacity issues. Our aim is not to reject CDS as a valid option at the EOL, nor to offer a clear-cut defense of euthanasia for minors, but to emphasize the ethical issues with both practices.

The role of end-of-life palliative sedation: medical and ethical aspects - Review / O papel da sedação paliativa no fim da vida: aspectos médicos e éticos - Revisão

Abstract Background and objective: Palliative sedation is a medical procedure that has been used for more than 25 years to relieve refractory symptoms not responsive to any previous treatment in patients with no possibility of cure and near the end of life. Many uncertainties persist on the theme regarding definition, indications, decision making, most appropriate place to perform the procedure, most used drugs, need for monitoring, fluids and nutritional support, and possible ethical dilemmas. The objective of this review was to seek a probable consensus among the authors regarding these topics not yet fully defined. Method: An exploratory search was made in secondary sources, from 1990 to 2016, regarding palliative sedation and its clinical and bioethical implications. Conclusions: Palliative sedation is an alternative to alleviate end-of-life patient suffering due to refractory symptoms, particularly dyspnea and delirium, after all other treatment options have been exhausted. Decision making involves prior explanations, discussions and agreement of the team, patient, and/or family members. It can be performed in general hospital units, hospices and even at home. Midazolam is the most indicated drug, and neuroleptics may also be required in the presence of delirium. These patients' monitoring is limited to comfort observation, relief of symptoms, and presence of adverse effects. There is no consensus on whether or not to suspend fluid and nutritional support, and the decision must be made with family members. From the bioethical standpoint, the great majority of authors are based on intention and proportionality to distinguish between palliative sedation, euthanasia, or assisted suicide.

Resumo Justificativa e objetivo: Sedação paliativa é um procedimento médico que tem sido empregado há mais de 25 anos com a finalidade de aliviar sintomas refratários que não respondem a tratamento anterior em pacientes sem possibilidade de cura e próximos do fim da vida. Muitas incertezas persistem sobre o tema no que diz respeito à definição, às indicações, à tomada de decisão, ao local mais adequado para fazer o procedimento, aos fármacos mais usados, à necessidade de monitoração, ao apoio hídrico e nutricional e aos possíveis dilemas éticos. O objetivo desta revisão foi o de buscar um provável consenso entre os autores em relação a esses tópicos ainda não totalmente definidos. Método: Foi feita uma pesquisa exploratória em fontes secundárias, a partir de 1990 até 2016, a respeito de sedação paliativa e suas implicações clínicas e bioéticas. Conclusões: A sedação paliativa é uma opção para aliviar sofrimento de pacientes no fim da vida, devido a sintomas refratários, especialmente dispneia e delirium, após terem sido esgotadas todas as outras opções de tratamento. A tomada de decisão envolve explicações prévias, discussões e concordância da equipe, pacientes e ou parentes. Pode ser feita em unidades hospitalares gerais ou de retarguarda e mesmo no domicílio. Midazolam é o fármaco mais indicado, podendo ser necessários também neurolépticos na presença de delirium. A monitoração desses pacientes se resume apenas à observação do conforto, do alívio dos sintomas e da presença de efeitos adversos. Não existe consenso em suspender ou não o apoio hídrico e nutricional; a decisão deve ser tomada junto aos parentes. Do ponto de vista bioético, a grande maioria dos autores se fundamenta na intenção e na proporcionalidade para fazer a distinção entre sedação paliativa, eutanásia ou suicídio assistido.

[The role of end-of-life palliative sedation: medical and ethical aspects - Review]. / O papel da sedação paliativa no fim da vida: aspectos médicos e éticos ­ Revisão.

BACKGROUND AND OBJECTIVE: Palliative sedation is a medical procedure that has been used for more than 25 years to relieve refractory symptoms not responsive to any previous treatment in patients with no possibility of cure and near the end of life. Many uncertainties persist on the theme regarding definition, indications, decision making, most appropriate place to perform the procedure, most used drugs, need for monitoring, fluids and nutritional support, and possible ethical dilemmas. The objective of this review was to seek a probable consensus among the authors regarding these topics not yet fully defined. METHOD: An exploratory search was made in secondary sources, from 1990 to 2016, regarding palliative sedation and its clinical and bioethical implications. CONCLUSIONS: Palliative sedation is an alternative to alleviate end-of-life patient suffering due to refractory symptoms, particularly dyspnea and delirium, after all other treatment options have been exhausted. Decision making involves prior explanations, discussions and agreement of the team, patient, and/or family members. It can be performed in general hospital units, hospices and even at home. Midazolam is the most indicated drug, and neuroleptics may also be required in the presence of delirium. These patients' monitoring is limited to comfort observation, relief of symptoms, and presence of adverse effects. There is no consensus on whether or not to suspend fluid and nutritional support, and the decision must be made with family members. From the bioethical standpoint, the great majority of authors are based on intention and proportionality to distinguish between palliative sedation, euthanasia, or assisted suicide.

Reckoning with the last enemy.

Developing the ethics of palliative sedation, particularly in contrast to terminal sedation, requires consideration of the relation between body and soul and of the nature of death and dying. Christianly considered, it also requires attention to the human vocation to immortality and hence to the relation between medicine (as aid for the body) and discipline (as aid to the soul). Leaning on Augustine's rendering of the latter, this paper provides a larger anthropological and soteriological frame of reference for the ethics of palliative sedation, organized by way of nine briefly expounded theses. It argues that palliative sedation, like other elements of medicine, is appropriate where, and only where, it properly orders care for the body to the requirements of care for the soul.

Comforting when we cannot heal: the ethics of palliative sedation.

This essay considers whether palliative sedation is or is not appropriate medical care. This requires one to consider (a) whether, in addition to the good of health, relief of suffering is also a proper end of medicine; (b) whether unconsciousness can ever be a good for a human being; and (c) how double-effect reasoning can help us think about difficult cases. The author concludes that palliative sedation may be proper medical care, but only in a limited range of cases.

The last low whispers of our dead: when is it ethically justifiable to render a patient unconscious until death?

A number of practices at the end of life can causally contribute to diminished consciousness in dying patients. Despite overlapping meanings and a confusing plethora of names in the published literature, this article distinguishes three types of clinically and ethically distinct practices: (1) double-effect sedation, (2) parsimonious direct sedation, and (3) sedation to unconsciousness and death. After exploring the concept of suffering, the value of consciousness, the philosophy of therapy, the ethical importance of intention, and the rule of double effect, these three practices are defined clearly and evaluated ethically. It is concluded that, if one is opposed to euthanasia and assisted suicide, double-effect sedation can frequently be ethically justified, that parsimonious direct sedation can be ethically justified only in extremely rare circumstances in which symptoms have already completely consumed the patient's consciousness, and that sedation to unconsciousness and death is never justifiable. The special case of sedation for existential suffering is also considered and rejected.

Palliative sedation: clinical context and ethical questions.

Practitioners of palliative medicine frequently encounter patients suffering distress caused by uncontrolled pain or other symptoms. To relieve such distress, palliative medicine clinicians often use measures that result in sedation of the patient. Often such sedation is experienced as a loss by patients and their family members, but sometimes such sedation is sought as the desired outcome. Peace is wanted. Comfort is needed. Sedation appears to bring both. Yet to be sedated is to be cut off existentially from human experience, to be made incapable of engaging self-consciously in any human action. To that extent, it seems that to lose consciousness is to lose something of real value. In this paper, I describe how sedation and the question of intentionally bringing about sedation arise in the care of patients with advanced illness, and I propose heuristics to guide physicians, including Christian physicians, who seek to relieve suffering without contradicting their profession to heal.

"Suffering" in Palliative Sedation: Conceptual Analysis and Implications for Decision Making in Clinical Practice.

Palliative sedation is an increasingly used and, simultaneously, challenging practice at the end of life. Many controversies associated with this therapy are rooted in implicit differences regarding the understanding of "suffering" as a prerequisite for palliative sedation. The aim of this study is to inform the current debates by a conceptual analysis of two different philosophical accounts of suffering-1) the subjective and holistic concept and 2) the objective and gradual concept-and by a clinical-ethical analysis of the implications of each account for decisions about palliative sedation. We will show that although the subjective and holistic account of suffering fits well with the holistic approach of palliative care, there are considerable challenges to justify limits to requests for palliative sedation. By contrast, the objective and gradual account fits well with the need for an objective basis for clinical decisions in the context of palliative sedation but runs the risk of falling short when considering the individual and subjective experience of suffering at the end of life. We will conclude with a plea for the necessity of further combined conceptual and empirical research to develop a sound and feasible understanding of suffering, which can contribute to consistent decision making about palliative sedation.

The 'French exception': the right to continuous deep sedation at the end of life.

In 2016, a law came into force in France granting terminally ill patients the right to continuous deep sedation (CDS) until death. This right was proposed as an alternative to euthanasia and presented as the 'French response' to problems at the end of life. The law draws a distinction between CDS and euthanasia and other forms of sympton control at the end of life. France is the first country in the world to legislate on CDS . This short report describes the particular context and underlying social values that led to this piece of legislation, and explores its meaning in the wider French context.

Morally-Relevant Similarities and Differences Between Assisted Dying Practices in Paradigm and Non-Paradigm Circumstances: Could They Inform Regulatory Decisions?

There has been contentious debate over the years about whether there are morally relevant similarities and differences between the three practices of continuous deep sedation until death, physician-assisted suicide, and voluntary euthanasia. Surprisingly little academic attention has been paid to a comparison of the uses of these practices in the two types of circumstances in which they are typically performed. A comparative domains of ethics analysis methodological approach is used in the paper to compare 1) the use of the three practices in paradigm circumstances, and 2) the use of the practices in paradigm circumstances to their use in non-paradigm circumstances. The analytical outcomes suggest that a bright moral line cannot be demonstrated between any two of the practices in paradigm circumstances, and that there are significant, morally-relevant distinctions between their use in paradigm and non-paradigm circumstances. A thought experiment is employed to illustrate how these outcomes could possibly inform the decisions of hypothetical deliberators who are engaged in the collaborative development of assisted dying regulatory frameworks.

Palliative sedation: ethical aspects.

Palliative sedation (PS), the medical act of decreasing a patient's awareness to relieve otherwise intractable suffering, is considered by some commentators to be controversial because of its consequences on residual survival and/or quality of life, and to be inappropriate for treating pure existential suffering. We will argue that PS must be always proportional, i.e. controlling refractory symptoms while keeping the loss of personal values (communication, affective relationships, care relationship) as low as possible, and that imminence of death is necessary too, from an ethical point of view, if a deep and continuous sedation (DCS) is proposed. Moreover, in case of pure existential suffering DCS should only be considered after repeated trials of respite sedation. The use of progressive consent and advance care planning to share the decision with the patient and to involve the family in the decision process as much as the patient desires is another ethical aspect to be pursued. Producing, implementing and sustaining guidelines at the higher scientific and professional level promise to help in improving both clinical and ethical aspects of the practice of PS.

Continuous Palliative Sedation for Existential Distress? A Survey of Canadian Palliative Care Physicians' Views.

BACKGROUND: Palliative sedation can be used for refractory symptoms during end-of-life care. However, continuous palliative sedation (CPS) for existential distress remains controversial due to difficulty determining when this distress is refractory. OBJECTIVES: The aim was to determine the opinions and practices of Canadian palliative care physicians regarding CPS for existential distress. METHODS: A survey focusing on experience and views regarding CPS for existential distress was sent to 322 members of the Canadian Society of Palliative Care Physicians. RESULTS: Eighty-one surveys returned (accessible target, 314), resulting in a response rate of 26%. One third (31%) of the respondents reported providing CPS for existential distress. On a 5-point Likert-type scale, 40% of participants disagreed, while 43% agreed that CPS could be used for existential distress alone. CONCLUSION: Differing opinions exist regarding this complex and potentially controversial issue, necessitating the education of health-care professionals and increased awareness within the general public.

Palliative Sedation With Propofol for an Adolescent With a DNR Order.

Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious. This method has been called palliative sedation therapy. Palliative sedation therapy is controversial because it can be misunderstood as euthanasia. We present a case in which an adolescent who is dying of leukemia has intractable pain. Experts in oncology, ethics, pain management, and palliative care discuss the trade-offs associated with different treatment strategies.

The impact of the inpatient practice of continuous deep sedation until death on healthcare professionals' emotional well-being: a systematic review.

BACKGROUND: The practice of continuous deep sedation is a challenging clinical intervention with demanding clinical and ethical decision-making. Though current research indicates that healthcare professionals' involvement in such decisions is associated with emotional stress, little is known about sedation-related emotional burden. This study aims to systematically review the evidence on the impact of the inpatient practice of continuous deep sedation until death on healthcare professionals' emotional well-being. METHODS: A systematic review of literature published between January 1990 and October 2016 was performed following a predefined protocol. MEDLINE, EMBASE, PubMed, Cochrane Library, CINAHL, Scopus, and PsycINFO were searched using search terms within "end-of-life care", "sedation", and "emotional well-being". Dissertations and reference lists were screened by hand. Two independent reviewers conducted study selection, data extraction and quality assessment. We abstracted measures of psychological outcomes, which were related to the practice of continuous deep sedation until death, including emotional well-being, stress and exhaustion. We used the GRADE approach to rate the quality of evidence. RESULTS: Three studies remained out of 528 publications identified. A total of 3'900 healthcare professionals (82% nurses, 18% physicians) from Japan (n = 3384) and the Netherlands (n = 16) were included. The prevalence of sedation-related burden in nurses varied from 11 to 26%, depending on outcome measure. Physicians showed medium levels of emotional exhaustion and low levels of depersonalization. Common clinical concerns contributing to professionals' burden were diagnosing refractory symptoms and sedation in the context of possibly life-shortening decisions. Non-clinical challenges included conflicting wishes between patients and families, disagreements within the care team, and insufficient professionals' skills and coping. Due to the limited results and heterogeneity in outcome measure, the GRADE ratings for the quality of evidence were low. CONCLUSIONS: Current evidence does not suggest that practicing continuous deep sedation is generally associated with lower emotional well-being of healthcare professionals. Higher emotional burden seems more likely when professionals struggled with clinical and ethical justifications for continuous deep sedation. This appeared to be in part a function of clinical experience. Further research is needed to strengthen this evidence, as it is likely that additional studies will change the current evidence base.