Palliative Sedation Research Articles

Information and Advance Care Directives for End-of-Life Residents with and without Dementia in Nursing Homes.

Communication and advance care directives may be affected by the presence of dementia. We sought to describe the information and end-of-life preferences provided to nursing homes residents and their families. Trained nurses collected information from 124 residents randomly selected with palliative care needs from eight nursing homes. A total of 54.4% of the residents with dementia had been provided with information about their state of health, compared to 92.5% of the residents without dementia (p < 0.01); family members exhibited no differences regarding information (p = 0.658), regardless of whether the resident was cognitively impaired. Most advance care interventions remained unexplored, except for cases where a transfer to hospital (81.5%) or serotherapy (69.4%) was desired. Decisions regarding palliative sedation (p = 0.017) and blood transfusion (p = 0.019) were lower among residents with dementia. Residents, especially residents with dementia, are provided with limited information and their preferences are inadequately explored.

‘How is it possible that at times we can be physicians and at times assistants in suicide?’ Attitudes and experiences of palliative care physicians in respect of the current legal situation of suicide assistance in Switzerland

IntroductionSwitzerland lacks specific legal regulation of assistance in suicide. The practice has, however, developed since the 1980s as a consequence of a gap in the Swiss Criminal Code and is...

Palliative sedation in a hospital unit

A person at the end of life may present uncomfortable symptoms becoming refractory to an adequate treatment. In this case, the initiation of palliative sedation is indicated. Most sedated inpatients die outside a specialized palliative care unit. Palliative sedation must be initiated and adapted according to the best clinical practices. This article describes the processes associated with palliative sedation in a hospital unit.

Should continuous deep sedation until death be legally regulated in Switzerland? An exploratory study with palliative care physicians.

In Switzerland, continuous deep sedation until death (CDSUD) is not legally regulated and the current clinical practice guidelines on palliative sedation from 2005 do not refer to it. In contrast, in France, a neighbouring country, CDSUD is regulated by a specific law and professional guidelines. International studies show that in culturally polymorphic countries, there are variations in the end-of-life practices between linguistic regions and that a linguistic region shares many cultural characteristics with the neighbouring country. This study aimed to explore the attitudes of palliative care physicians from the French-speaking part of Switzerland on the question of whether CDSUD should be legally regulated in the country, and to identify their arguments. Our study also aimed to assess whether a hypothetical Swiss law on CDSUD should be similar to the current legal regulation of this practice in France. We conducted a multicentre exploratory qualitative study based on face-to-face interviews with palliative care physicians in the French-speaking part of Switzerland. We analysed the interview transcripts using thematic analysis, combining deductive and inductive coding. Most of the participants were opposed to having specific legal regulation of CDSUD in Switzerland. Their arguments were diverse: some focused on medical and epistemological aspects of CDSUD, whereas others emphasized the legal inconvenience of having such regulation. None had the opinion that, if CDSUD were legally regulated in Switzerland, the regulation should be similar to that in France. This study allows to better understand why palliative care physicians in French-speaking Switzerland may be reluctant to have legal regulation of CDSUD. Further studies covering the whole country would be needed to gain a more complete picture of Swiss palliative care physicians on this question.

Sedação paliativa terminal no Brasil: revisão integrativa da literatura

Abstract Palliative sedation integrates the broad spectrum of practices and approaches in palliative care. Its main objective is not to anticipate the end of life, but to provide comfort and symptom relief for terminal conditions; however, opinions in academic, professional, social, and religious contexts differ about its application. This integrative literature review gathers relevant discussions and research in the Brazilian context to contribute to a more updated and appropriate understanding of palliative sedation. Discussions on palliative sedation bring issues regarding its emergence, the opinions of physicians and students, bioethical factors, and challenges. However, the available literature on this topic is scarce, encompassing social, ethical, religious, and professional aspects that require individual interpretations and consensus among social spheres.

Sedação paliativa para controle de sofrimento existencial refratário: um fluxograma

Abstract There is little consensus in the literature on how refractory psychological distress, a serious clinical challenge that may occur at end of life, should be managed. This case report focuses on a patient hospitalized at the Hospital de Apoio in Brasília, who required palliative sedation for refractory psychological distress relief and obtained satisfactory symptom control. A flowchart was elaborated based on bibliographic review which included the European guidelines for palliative sedation, a useful tool for clinical cases in palliative care.

Palliative sedation in Brazil: an integrative literature review

Resumen La sedación paliativa integra el amplio conjunto de prácticas y acciones de los cuidados paliativos. Su objetivo principal no es acelerar el final de la vida, sino proporcionar confort y alivio de los síntomas de los pacientes terminales. Esta práctica genera opiniones divergentes tanto en el ámbito académico y profesional como en el social y religioso. Esta revisión integradora de la literatura busca levantar las discusiones e investigaciones más pertinentes en el escenario brasileño para contribuir a la construcción de una noción más actualizada y adecuada contemporáneamente sobre sedación paliativa. El surgimiento, la opinión de médicos y estudiantes, los factores bioéticos y los desafíos en la aplicación constituyen temas de discusión sobre la sedación paliativa en el final de la vida. Sin embargo, la literatura disponible sobre este tema sigue siendo escasa, permeada de cuestiones sociales, éticas, religiosas y profesionales que requieren interpretaciones individuales y consenso entre las esferas sociales.

Palliative sedation in Brazil: an integrative literature review

Resumo A sedação paliativa está inserida no amplo espectro de práticas e condutas dos cuidados paliativos. Seu objetivo principal não é adiantar o fim da vida, mas sim prover conforto e alívio dos sintomas em uma condição de vida terminal. A prática diverge opiniões tanto no ambiente acadêmico e profissional quanto no social e religioso. Como objetivo, esta revisão integrativa da literatura buscou discussões e pesquisas mais pertinentes no cenário brasileiro, a fim de contribuir para a construção de uma noção mais atualizada e adequada ao contexto contemporâneo quanto à sedação paliativa. Questões como surgimento, opinião de médicos e estudantes, fatores bioéticos e desafios quanto à aplicação compõem a discussão da sedação paliativa na terminalidade. Todavia, a literatura disponível sobre a temática ainda é escassa, permeada de aspectos sociais, éticos, religiosos e de profissionais que demandam interpretações individuais e consenso entre as esferas sociais.

Palliative sedation for refractory psychological distress management: a flowchart

Resumo Há pouco consenso na literatura sobre como deve ocorrer o manejo do sofrimento existencial refratário, um desafio clínico dramático que pode ocorrer no contexto da terminalidade. Este artigo apresenta um relato de caso de uma paciente internada no Hospital de Apoio de Brasília que necessitou de sedação paliativa para alívio de sofrimento existencial refratário e obteve controle satisfatório de sintomas. Também foi elaborado fluxograma decisório, embasado em revisão que inclui as diretrizes europeias de sedação paliativa, uma ferramenta útil para clínicos em cenários de cuidados paliativos.

A Pragmatic Review of the General Population’s Attitude, Knowledge and Representations with Regard to Continuous Palliative Sedation

Continuous palliative sedation is an end-of-life practice that consists of inducing a state of unconsciousness in patients who are approaching death to relieve them of severe and refractory symptoms. The Act Respecting End-of-life Care has provided a framework for continuous palliative sedation in the Canadian province of Quebec since 2015. Understanding the general population’s complex attitudes, and knowledge and representations with respect to continuous palliative sedation can contribute to more informed end-of-life care decision-making. Social workers play a crucial role in promoting and implementing enlightened end-of-life choices. The aim of this paper is to explore the general population’s attitude, knowledge and representations with regard to continuous palliative sedation. We used a pragmatic methodology, seeking to explore a real-life knowledge gap while considering resource and time constraints. Two research team members independently selected related studies and extracted their content. We included eight articles involving a total of 18,961 participants. Participants with a positive attitude towards continuous palliative sedation represented 25% to 81% of the study populations. Attitude seems positively affected by the use of euphemisms (i.e. sleep) to describe the intervention. The term “continuous palliative sedation” is unfamiliar to most and is often confused with euthanasia. In the discussion, we offer recommendations for social workers when accompanying patients and families in making end-of-life decisions.

Palliative sedation for refractory psychological distress management: a flowchart

Resumen Existe poco consenso en la literatura sobre cómo manejar el sufrimiento existencial refractario, un desafío clínico que puede ocurrir en el contexto del fin de la vida. Este artículo presenta el reporte de caso de un paciente ingresado en el Hospital de Apoyo de Brasília, quien requirió sedación paliativa para aliviar el sufrimiento existencial refractario y obtuvo un control satisfactorio de los síntomas. También se elaboró un diagrama de flujo para la toma de decisiones, basado en una revisión que incluye las directrices europeas para la sedación paliativa, una herramienta útil para los clínicos en el contexto de cuidados paliativos.

Narrative for Part Five of the Ethical and Religious Directives

Part Five is in considerable need of revision. There have been many developments in medicine and health care that present serious moral challenges to the teachings of the Church. The recommendations below include new emphasis on palliative care and hospice, the right of Catholics to receive the sacraments and visits from the family during illness, further safeguards to protect those in a persistent vegetative state, the immorality of voluntary stopping of eating and drinking (VSED), the permissibility of do not resuscitate (DNR) orders, the limited use of palliative sedation, and the requirement that the standards for determining death be rigorously applied by medical professionals. Other minor recommendations seek to bring greater clarity to the existing directives.

An analysis of the experiences of bereaved relatives and health care providers following palliative sedation: a study protocol for a qualitative international multicenter case study

BackgroundPatients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sedated patients and their health care professionals (HCPs). The aims of this study protocol are: 1) to elicit the experiences of bereaved relatives and health care professionals of patients treated with palliative sedation and 2) to explore the understanding of the decision-making process to start palliative sedation across care settings in 5 European countries.MethodsThis study protocol is part of the larger HORIZON 2020 Palliative Sedation project. Organisational case study methodology will be used to guide the study design. In total, 50 cases will be conducted in five European countries (10 per country). A case involves a semi-structured interview with a relative and an HCP closely involved in the care of a deceased patient who received some type of palliative sedation at the end-of-life. Relatives and health care professionals of deceased patients participating in a linked observational cohort study of sedated patients cared for in hospital wards, palliative care units and hospices will be recruited. The data will be analyzed using a framework analysis approach. The first full case will be analyzed by all researchers after being translated into English using a pre-prepared code book. Afterwards, bimonthly meetings will be organized to coordinate the data analysis.DiscussionThe study aims to have a better understanding of the experiences of relatives and professional caregivers regarding palliative sedation and this within different settings and countries. Some limitations are: 1) the sensitivity of the topic may deter some relatives from participation, 2) since the data collection and analysis will be performed by at least 5 different researchers in 5 countries, some differences may occur which possibly makes it difficult to compare cases, but using a rigorous methodology will minimize this risk.

Expanded terminal sedation in end-of-life care

Despite advances in palliative care, some patients still suffer significantly at the end of life. Terminal Sedation (TS) refers to the use of sedatives in dying patients until the point...

Development of Clinical Guideline for Drug Dose Calculation Using the Delphi Method

Background: Empirical studies in competence are lacking in the field of Drug dose calculation.Objective:To construct a clinical guideline for drug dose calculation and to enhance the comprehension of theforthcoming nursing students.Methods: Two rounds of the Delphi method were used. Data were analyzed by content analysis and withdescriptive statistics.Results: After two sequential sessions of discussion by the Delphi method, a clinical guideline for Drug doseCalculation was constructed. This guideline includes the formulas for Drug dose Calculations. The reliabilitywas achieved by Median and Consensus percentage.Conclusions:We constructed a clinical guideline for palliative sedation therapy using the Delphi technique. Theclinical efficacy of this guideline should be tested in the future.

AWARENESS OF PARTNER PREFERENCES FOR END-OF-LIFE ASPECTS AND TREATMENTS IN OLDER ADULT COUPLES

Abstract Surrogate medical decision-making at the end of life is common and the patient’s partner is often the person who must make these critical decisions. The challenge of surrogate medical decision-making is to make decisions that best fit the patient's wishes. This study investigates how accurately older adult couples assess each other’s preferences for eleven end-of-life aspects and three medical treatments in a nationally representative sample of adults aged 58 and over living in Switzerland (N=573). The contribution of factors including end-of-life (EOL) discussion and care planning, self-rated knowledge of partner preferences, and EOL preferences homogamy in scoring higher in accurately assessing partner’s preferences for the end of life is examined. Weighted proportions, assessment accuracy scores and ordinary least squares regressions controlled for individuals’ characteristics are calculated. Results show that 44% of respondents accurately assessed their partners’ preferences for aspects related to medical, psychosocial, anticipatory and burden concerns at end of life, and 62% correctly predicted the preferences for cardiopulmonary resuscitation, life-prolonging measures, and palliative sedation. Respondents whose partner discussed their EOL preferences with them, completed an advance directive, designated them as their healthcare proxy, as well as respondents reporting very/rather good knowledge of their partners’ EOL preferences were more likely to have a higher accuracy score for their partners’ EOL preferences. Being a couple is not enough to assess one’s partner’s EOL preferences correctly. Communication about EOL wishes among the couple and individual EOL care planning should be encouraged, as both improve the assessment accuracy of partners’ EOL preferences.

Palliative care physicians' decision-making about palliative sedation for existential suffering: A Belgian nationwide qualitative study.

This study aims to provide an in-depth understanding of the content and process of decision-making about palliative sedation for existential suffering (PS-ES) as perceived by Belgian palliative care physicians. This Belgian nationwide qualitative study follows a grounded theory approach. We conducted semistructured interviews with 25 palliative care physicians working in 19 Belgian hospital-based palliative care units and 4 stand-alone hospices. We analyzed the data using the Qualitative Analysis Guide of Leuven, and we followed the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ). Analysis of the data identified several criteria that physicians apply in their decision-making about PS-ES, namely, the importance of the patient's demand, PS-ES as a last resort option after all alternatives have been applied, the condition of unbearable suffering combined with other kinds of suffering, and the condition of being in a terminal stage. Regarding the process of decision-making itself, physicians refer to the need for multidisciplinary perspectives supported by an interpretative dialogue with the patient and all other stakeholders. The decision-making process involves a specific temporality and physicians' inner conviction about the need of PS-ES. Belgian palliative care physicians are not sure about the criteria regarding decision-making in PS-ES. To deal with complex existential suffering in end-of-life situations, they stress the importance of participation by all stakeholders (patient, relatives, palliative care team, other physicians, nurses, social workers, physiotherapists, occupational therapists, chaplains, etc.) in the decision-making process to prevent inadequate decisions being made.

Palliative medicine from deontology

Palliative medicine is the medicine that accompanies the person in their process of dying for alleviate their unwanted suffering, is a medicine that offers comfort care to the patient and his family, a medicine that does not prolong life unnecessarily at the expense of suffering, but rather it widens it, it is a medicine that takes care of life. Medical deontology tells us how our good medical practice through the rules contained in the Code of Ethics. In this article I address the practice of palliative medicine taking into account medical deontology, focusing on two issues that generate controversy such as palliative sedation and euthanasia. I consider that the good practice of palliative medicine consists, not in intentionally causing the death of the patient, but neither in unnecessarily prolong his agony, but to alleviate his suffering until death comes.

Palliative Sedation Therapy Practice Comparison - A Survey of Pediatric Palliative Care and Pain Management Specialists.

Context: Palliative sedation therapy (PST) can relieve suffering at end-of-life (EOL) in children with intolerable and refractory symptoms. However, updated and consistent guidance on PST practices are imperative. Objectives: We investigate current variations in clinical practice and PST implementation among pediatric palliative care (PPC) and pain management (PM) specialists. Methods: We distributed an IRB-exempt electronic anonymous survey via email through the Society of Pediatric Pain Medicine, and the American Academy of Hospice and Palliative Medicine. Survey responses were collated and descriptively reported. Results: Of 83 survey responses, the majority (75%) represented large academic children's hospitals. The distribution between PPC and pediatric pain management specialists' responses was 60% and 40%, respectively. Most respondents reported having designated pain management and/or palliative care teams (70% and 90%, respectively). Approximately half (48%) reported following an institutional PST protocol, most not requiring formal ethics consult (69%). Only 54% of respondents noted that the Do Not Resuscitate (DNR) order was required prior to PST initiation. PST was primarily utilized for children with oncologic diagnoses (76%). The primary and secondary medications of choice for PST implementation were reported to be opioids (39%) and benzodiazepines (36%) by pain management specialists, and benzodiazepines (52%) and barbiturates (28%) by palliative care specialists. Conclusions: Our study highlights the variability in the practice and implementation of PST. Further educational efforts are key for establishing PST practices and efficient protocol development.

The APSY-SED study: protocol of an observational, longitudinal, mixed methods and multicenter study exploring the psychological adjustment of relatives and healthcare providers of patients with cancer with continuous deep sedation until death

BackgroundSince 2016, France is the only country in the World where continuous deep sedation until death (CDSUD) is regulated by law. CDSUD serves as a response to refractory suffering in palliative situations where the patients’ death is expected to occur in the following hours or days. Little is known on the psychological adjustment surrounding a CDSUD procedure for healthcare providers (HCPs) and relatives. Our study aims to gather qualitative and quantitative data on the specific processes behind the psychological adjustment of both relatives and HCPs, after the administration of CDSUD for patients with cancer.MethodsThe APSY-SED study is a prospective, longitudinal, mixed-methods and multicenter study. Recruitment will involve any French-speaking adult cancer patient for who a CDSUD is discussed, their relatives and HCPs. We plan to include 150 patients, 150 relatives, and 50 HCPs. The evaluation criteria of this research are: 1/ Primary criterion: Psychological adjustment of relatives and HCPs 6 and 13 months after the death of the patient with cancer (psychological adjustment = intensity of anxiety, depression and grief reactions, CDSUD-related distress, job satisfaction, Professional Stress and Professional experience). Secondary criteria: a)occurrence of wish for a CDSUD in patients in palliative phase; b)occurrence of wish for hastened death in patients in palliative phase; c)potential predictors of adjustment assessed after the discussion concerning CDSUD as an option and before the setting of the CDSUD; d) Thematic analysis and narrative account of meaning-making process concerning the grief experience.DiscussionThe APSY-SED study will be the first to investigate the psychological adjustment of HCPs and relatives in the context of a CDSUD procedure implemented according to French law. Gathering data on the grief process for relatives can help understand bereavement after CDSUD, and participate in the elaboration of specific tailored interventions to support HCPs and relatives. Empirical findings on CDSUD among patients with cancer in France could be compared with existing data in other countries and with results related to other medical fields where CDSUD is also conducted.Trial registrationThis protocol received the National Registration Number: ID-RCB2021-A03042-39 on 14/12/2021.