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.

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.

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.

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.

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.

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.

Palliative sedation: the position statement of the Italian National Committee for Bioethics.

In January 2016 the Italian National Bioethics Committee (NBC) published a position statement entitled Deep and continuous palliative sedation in the imminence of death, related to the use of sedation and analgesia for relief from pain and psychological distress in dying patients. In this statement the Committee points out the clinical and ethical appropriateness of palliative sedation as a therapeutic procedure. As a result, today palliative sedation has to be considered useful, scientifically safe and reliable, and acknowledged as an integral part of good clinical practice. At the same time, the position statement, once and for all, makes clear that palliative sedation cannot and must not be equated with the practice of euthanasia. Thus, this document should be known by health professionals caring for dying patients not only in palliative as well as in intensive care settings, but it should be also considered as a milestone aimed to encourage and ease a widespread implementation of this procedure in all health care settings.

Controversies surrounding continuous deep sedation at the end of life: the parliamentary and societal debates in France.

BACKGROUND: Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying. The practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a framework would be unique in the world. DISCUSSION: In this paper we will highlight and reflect on four relevant aspects and shortcomings of the proposed bill. First, that the bill suggests that continuous deeps sedation should be considered as a sui generis practice. Second, that it requires that sedation should always be accompanied by the withholding of all artificial nutrition and hydration. In the most recently amended version of the legal proposal it is stated that life sustaining treatments are withheld unless the patient objects. Third, that the French bill would not require that the suffering for which continuous deep sedation is initiated is unbearable. Fourth, the question as to whether the proposal should be considered as a way to avoid having to decriminalise euthanasia and/or PAS or, on the contrary, as a veiled way to decriminalise these practices. The French proposal to amend the Public Health Act to include a right to continuous deep sedation for some patients is a unique opportunity to clarify the legality of continuous deep sedation as an end-of-life practice. Moreover, it would recognize that the practice of continuous deep sedation raises ethical and legal issues that are different from those raised by symptom control on the one hand and assisted dying on the other hand. Nevertheless, there are still various issues of significant ethical concern in the French legislative proposal.

Distancing sedation in end-of-life care from physician-assisted suicide and euthanasia.

Lipuma equates continuous sedation until death (CSD) to physician-assisted suicide/euthanasia (PAS/E) based on the premise that iatrogenic unconsciousness negates social function and, thus, personhood, leaving a patient effectively 'dead'. Others have extrapolated upon this position further, to suggest that any use of sedation and/or opioids at the end of life would be analogous to CSD and thus tantamount to PAS/E. These posits sit diametrically opposite to standard end-of-life care practices. This paper will refute Lipuma's position and the posits borne from it. We first show that prevailing end-of-life care guidelines require proportional and monitored use of sedatives and/or opioids to attenuate fears that the use of such treatment could hasten death. These guidelines also classify CSD as a last resort treatment, employed only when symptoms prove intractable, and not amenable to all standard treatment options. Furthermore, CSD is applied only when deemed appropriate by a multidisciplinary palliative medicine team. We also show that empirical data based on local views of personhood will discount concerns that iatrogenic unconsciousness is tantamount to a loss of personhood and death.

Physician-assisted suicide, euthanasia and palliative sedation: attitudes and knowledge of medical students.

OBJECTIVES: In November 2015, the German Federal Parliament voted on a new legal regulation regarding assisted suicide. It was decided to amend the German Criminal Code so that any "regular, repetitive offer" (even on a non-profit basis) of assistance in suicide would now be considered a punishable offense. On July 2, 2015, a date which happened to be accompanied by great media interest in that it was the day that the first draft of said law was presented to Parliament, we surveyed 4th year medical students at the Technical University Munich on "physician-assisted suicide," "euthanasia" and "palliative sedation," based on a fictitious case vignette study. METHOD: The vignette study described two versions of a case in which a patient suffered from a nasopharyngeal carcinoma (physical suffering subjectively perceived as being unbearable vs. emotional suffering). The students were asked about the current legal norms for each respective course of action as well as their attitudes towards the ethical acceptability of these measures. RESULTS: Out of 301 students in total, 241 (80%) participated in the survey; 109 answered the version 1 questionnaire (physical suffering) and 132 answered the version 2 questionnaire (emotional suffering). The majority of students were able to assess the currently prevailing legal norms on palliative sedation (legal) and euthanasia (illegal) correctly (81.2% and 93.7%, respectively), while only a few students knew that physician-assisted suicide, at that point in time, did not constitute a criminal offense. In the case study that was presented, 83.3% of the participants considered palliative sedation and the simultaneous withholding of artificial nutrition and hydration as ethically acceptable, 51.2% considered physician-assisted suicide ethically legitimate, and 19.2% considered euthanasia ethically permissible. When comparing the results of versions 1 and 2, a significant difference could only be seen in the assessment of the legality of palliative sedation: it was considered legal more frequently in the physical suffering version (88.1% vs. 75.8%). CONCLUSION: The majority of the students surveyed wrongly assumed that physician-assisted suicide is a punishable offense in Germany. However, a narrow majority considered physician-assisted suicide ethically acceptable in the case study presented. Compared to euthanasia, more than twice as many participants considered physician-assisted suicide acceptable. There was no significant difference between personal attitudes towards palliative sedation, physician-assisted suicide or euthanasia in light of physical or emotional suffering. Educational programs in this field should be expanded both qualitatively and quantitatively, especially considering the relevance of the subject matter, the deficits within the knowledge of legal norms and the now even higher complexity of the legal situation due to the new law from December 2015.

[Deep continuous palliative sedation in the Opinion adopted by the Italian National Bioethics Committee (Deep palliative sedation)]. / La sedazione palliativa profonda continua nel Parere approvato dal Comitato nazionale per la bioetica italiano il 29 gennaio 2016 (sedazione palliativa profonda).

The Author examines the recent opinion delivered by the Italian National Committee for Bioethics on deep palliative sedation. In particular, it examines its strengths and ample shade that show its ideology, once again, in contrast with the right of every human being to die with dignity.

Clarifying an Expanded Use of Continuous Sedation Until Death: A Reply to the Commentary by McCammon and Piemonte.

Susan D. McCammon and Nicole M. Piemonte offer a thoughtful and thorough commentary on our manuscript entitled "Expanding the use of Continuous Sedation Until Death." In this reply we attempt to clarify and further defend our position. We show how continuous sedation until death is not a "first resort" but rather a legitimate option among many that should available to terminally ill patients whose life expectancy is less than six months. We also attempt to show that we do not equivocate the meaning of palliative care as the commentators suggested. We argue that the traditional notion of palliative care should move beyond relief of "experienced suffering" to relief of potential suffering for those whose life expectancy is less than six months. Lastly, we challenge the commentator's position that the realm of ordinary medicine" should be the guide to care, by showing how the notion of ordinary medicine has been successfully challenged in both bioethical scholarship and the courts in a way that shows ordinary medicine to be an evolving concept rather than a static, universal guide.