Continuous palliative sedation until death: a qualitative study of palliative care clinicians' experiences.

BACKGROUND: The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. AIM: This study aims to gain a better understanding of palliative care clinicians' experiences with continuous palliative sedation. DESIGN: We conducted a qualitative study based on focus group discussions. SETTING/PARTICIPANTS: We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. RESULTS: An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. CONCLUSIONS: Interaction with the patient's family, uncertainty about the patient's prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

Development of a bilingual interdisciplinary scale assessing self-efficacy for participating in Medical Assistance in Dying.

Medical Assistance in Dying (MAiD) is a complex process involving the person seeking care and their relatives. MAiD involves physical, psychosocial and spiritual needs, and consequently the involvement of an interdisciplinary team is beneficial. Therefore, updating the knowledge and skills of healthcare and social services professionals is critical. An interdisciplinary team from Laval University (Quebec, Canada) has developed a continuous training program for all health care and social services professionals who could be involved in the care of persons who request MAiD and their loved ones. It is crucial to assess whether the objectives of the continuous training program are being met, especially since this new training addresses several complex issues (legal, ethical, and clinical). Bandura's self-efficacy theory has been widely used to develop scales for assessing the impact of training programs and identifying knowledge gaps. Bandura's theory states that feeling secure in one's self-efficacy leads to self-determined motivation. Although there are various scales intended to measure self-efficacy in palliative care, none include self-efficacy for participating in the process surrounding MAiD. As a result, we aim to create a bilingual (English-French) interdisciplinary scale to assess self-efficacy for participating in the process surrounding MAiD. The scale will allow decision-makers and researchers to identify current knowledge gaps. It will also be useful for assessing the impact of current and future training programs addressing this end-of-life practice. In this work in progress, we briefly introduce the training program and the future steps in the development and validation of the scale.

L'aide médicale à mourir (AMM) est un processus complexe impliquant la personne qui demande le soin et ses proches. L'AMM implique des besoins physiques, psychosociaux et spirituels. Par conséquent, l'implication d'une équipe interdisciplinaire est bénéfique et la mise à niveau des connaissances et des compétences des professionnel.es est essentielle. Une équipe interdisciplinaire de l'Université Laval (Québec, Canada) a développé un programme de formation continue destiné aux professionnelles de la santé et des services sociaux susceptible d'être impliqué es dans ls soins et services des personnes qui demandent l'AMM et de leurs proches. Il est crucial d'évaluer si les objectifs du programme de formation continue sont atteints, d'autant plus que cette nouvelle formation aborde plusieurs questions complexes (juridiques, éthiques et cliniques). La théorie du sentiment d'auto-efficacité de Bandura a été largement utilisée pour développer des échelles permettant d'évaluer l'impact des programmes de formation et d'identifier les lacunes en matière de connaissances. Cette théorie stipule que le fait de se sentir sûre de son efficacité personnelle conduit à une motivation intrinsèque à accomplir le comportement visé. Bien qu'il existe plusieurs échelles destinées à mesurer l'auto-efficacité dans le domaine des soins palliatifs, aucune n'inclut l'auto-efficacité pour la participation au processus entourant l'AMM. Par conséquent, nous développons une échelle interdisciplinaire bilingue (anglais-français) pour évaluer l'auto-efficacité à participer au processus entourant l'AMM. L'échelle permettra aux décideuses, décideurs et aux chercheuses et chercheurs d'identifier les lacunes actuelles en matière de connaissances. Elle sera également utile pour évaluer l'impact des programmes de formation actuels et futurs portant sur cette pratique de fin de vie. Dans cet article, nous présentons brièvement le programme de formation et les étapes futures du développement et de la validation de l'échelle.

Medical assistance in dying in Canada: A scoping review on the concept of suffering.

OBJECTIVES: Medical Assistance in Dying (MAiD) has been legal in Canada since June 2016. A person can receive MAiD if their suffering cannot be relieved under conditions that they consider acceptable. Informed consent requires that the person requesting MAiD has received all the information needed to make their decision; that is, medical diagnosis and prognosis, available treatments including palliative care. The evaluation of unbearable suffering is known to be challenging as suffering is often psychological, existential, and social in nature. While interventions to relieve suffering exist, it is unclear how suffering is assessed and addressed in the literature on MAiD practice. No scoping review exists on the topic in Canada. The aim of this study was to understand how the concept of suffering was approached within the Canadian MAiD grey (GL) and scientific (peer-reviewed) literature (SL), specifically: 1- How suffering is defined and assessed in the context of MAiD in Canada and 2- Which interventions in response to suffering are recommended within the process of obtaining informed consent for MAiD and throughout the process of MAiD itself. METHODS: A scoping review was conducted based on PRISMA-SR guidelines. SL articles (N = 1027) were identified from a review of 6 databases and GL documents (N = 537) were obtained from the provinces of Quebec, Ontario and British Columbia. Documents were analyzed using NVivo with coding by two-raters and continuous team discussions. RESULTS: A multidimensional definition of suffering, akin to the concept of total pain, is used. The assessment of suffering is based upon patients' reports. Tools to aid in the assessment are not comprehensively covered. Specific interventions to address suffering were often focused on active listening and the management of physical symptoms. No specific interventions were mentioned and there was no reference to clinical practice guidelines in the grey literature to address other components of suffering. The use of a multidisciplinary approach is suggested without specifying the nature of involvement. CONCLUSIONS: Our review indicates that published guidelines of MAID assessments could include clearer structure around the assessment and management of suffering, with suggestions of tools that may help clarify types of suffering and reference to clinical practice guidelines and interventions to holistically attend to patient suffering with an attention on non-physical symptoms. Guidelines would benefit from clearer explanations of how members of an interdisciplinary teams could be coherently coordinated.

"Do Not Protect Us, Train Us."-Swiss Healthcare Students' Attitudes Toward Caring for Terminally Ill Patients.

Positive attitudes and a sense of competence toward end-of-life care are the key to adequately support terminally ill patients. This qualitative study aims to explore healthcare students' attitudes toward caring for terminally ill patients. Eleven students from the University of Applied Health Sciences in Switzerland participated in focus groups. Attitudes were overall positive. Most participants felt that supporting dying patients was a way to achieve professional fulfillment. However, most students felt not competent in palliative care and lacking experience. They wanted to receive better training, more specifically in good practices and appropriate behaviors. Our study fills a knowledge gap regarding the opinions and pedagogical needs of healthcare students, and highlights the importance of experiencing end-of-life care during the educational process. We recommend early exposure to terminally ill patients and appropriate attitudes toward death and dying as part of the bachelor's curriculum, accompanied by benevolent guidance from teachers and health professionals.

Evaluation of the psychometric properties of patient-reported and clinician-reported outcome measures of chemotherapy-induced peripheral neuropathy: a COSMIN systematic review protocol.

INTRODUCTION: Chemotherapy-induced peripheral neuropathy (CIPN) is a poorly understood side effect of many antineoplastic agents. Patients may experience sensory, motor and autonomic symptoms, negatively impacting quality of life. A gold-standard assessment methodology has yet to be determined, limiting efforts to identify effective agents to prevent or treat CIPN. METHODS AND ANALYSIS: This is a protocol of a systematic review of psychometric analyses of CIPN Clinician Reported Outcome Measures (ClinROM) and Patient-Reported Outcome Measures (PROM) among adults receiving, or who had previously received chemotherapy for cancer. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) quality ratings will be compared across studies and across ClinROMs and PROMs. Studies reporting psychometric proprieties of CIPN ClinROMs and/or PROMs among adults aged ≥18 years will be eligible for inclusion, with no restriction on language or year of publication. MEDLINE, Embase, CINAHL and APA PsycINFO databases will be searched from inception to 31 December 2021. Study characteristics, measurement properties of the ClinROMs and/or PROMs and the CIPN definitions will be extracted. The Synthesis Without Meta-analysis guideline will be used to guide data synthesis. The COSMIN Risk of Bias checklist will be used by two independent raters to assess methodological quality. Subgroup analyses by age, chemotherapy type, and study timing in relation to the delivery of chemotherapy will be carried out where data are available. An adapted version of Outcome Measures in Rheumatology filter 2.1 will be used to provide a best-evidence synthesis of CIPN ClinROMs and PROMs and to recommend a CIPN assessment tool for clinical and research settings. ETHICS AND DISSEMINATION: Ethical approval is not necessary to be obtained for this systematic review protocol. Results will be disseminated to clinicians and policy-makers by publication in a peer-reviewed journal and by presenting at relevant conferences. PROSPERO REGISTRATION NUMBER: CRD42021278168.

Cultural adaptation of a community-based advance serious illness planning decision aid to the Quebec context involving end-users.

INTRODUCTION: Traditional advance care planning focuses on end-of-life planning in the context of a certain or imminent death. It is not tailored for serious illness planning, where the 'death' outcome is uncertain. The Plan Well Guide™ (PWG) is a decision aid that empowers lay persons to better understand different types of care and prepares them, and their substitute decision-makers, to express both their authentic values and informed treatment preferences in anticipation of serious illness. A cultural adaptation was necessary to make the material suitable to the context of Quebec, a French-speaking Canadian province. METHODS: We engaged lay collaborators and experts in a panel, involving three phases of consultation and data collection. These included an online questionnaire, focused interviews and virtual focus groups that identified elements within the francophone PWG affecting its feasibility, adaptation and integration, as well as items that should be modified. RESULTS: We engaged 22 collaborators between April and September 2021. The majority (82%) ranked the first translation as good or very good; most (70%) stated that they would recommend the final adaptation. Both lay and expert panel members suggested simplifying the language and framing the tool better within the context of other advance medical planning processes in Quebec. Translation was considered in a cultural context; the challenges identified by the research team or by collaborators were addressed during the focus group. Examples of wording that required discussion include translating 'getting the medical care that's right for you' when referring to the PWG's goal. An equivalent expression in the French translation was believed to invoke religious associations. Using the term 'machines' to describe life-sustaining treatments was also deliberated. CONCLUSION: Our collaborative iterative adaptation process led to the first French advanced serious illness planning tool. How acceptable and user-friendly this French adaptation of the PWG is in various Canadian French-speaking environments requires further study. CONTRIBUTION: We organized a focus group inviting both lay collaborators and experts to contribute to the interpretation of the results of the previous phases. This choice allowed us to add more value to our results and to the final PWG in French.

Promising best practices implemented in long-term care homes during COVID-19 pandemic to address social isolation and loneliness: a scoping review protocol.

INTRODUCTION: Prior to the COVID-19 pandemic, social isolation and loneliness (SIL) affected at least one-third of the older people. The pandemic has prompted governments around the world to implement some extreme measures such as banning public gatherings, imposing social distancing, mobility restrictions and quarantine to control the spread and impact of the novel coronavirus. Though these unprecedented measures may be crucial from a public health perspective, they also have the potential to further exacerbate the problems of SIL among residents in long-term care homes (LTCHs). However, some LTCHs have developed promising best practices (PBPs) to respond to the current situation and prepare for future pandemics. Key aspects of such practices revolve around maintaining and strengthening social connections between residents and their families which helps to reduce SIL. This scoping review looks at existing PBPs that have been implemented to reduce SIL among LTCH residents during the most recent pandemics. METHODS AND ANALYSIS: We will follow Arksey and O'Malley's framework of scoping review, further developed by Levac et al. In addition, we will also apply the Joanna Briggs Institute Reviewers' 'Methodology for Scoping Reviews'. Ten electronic databases and grey literature will be searched for articles published from January 2003 to March 2021 in either English or French. Two reviewers will independently screen titles and abstracts and then full texts for final inclusion. Data will be extracted using a standardised form from 'Evidence for Policy and Practice Information'. The results will be presented in a tabular form and will be summarised and interpreted using a narrative synthesis. ETHICS AND DISSEMINATION: Formal ethical approval is not required as no primary data are collected. Findings will be used to develop a solid knowledge corpus to address the challenges of SIL in LTCHs. Our findings will help to identify cutting edge practices, including technological interventions that could support health services in addressing SIL in the context of LTCHs and our ageing society.

Factors affecting attitudes towards caring for terminally ill patients among nursing students in Switzerland: a cross-sectional study.

OBJECTIVES: Positive attitudes towards end-of-life care are essential among nursing students to adequately support terminally ill patients and enable students to feel confident about providing end-of-life care. This study aimed to determine nursing students' attitudes towards caring for terminally ill patients, as well as the associations between these attitudes and year of study, exposure to terminally ill people, self-perceived nursing skills and subjective impact of instruction. DESIGN: Cross-sectional study. SETTING: A health sciences school in Switzerland. PARTICIPANTS: All preparatory students, first-year nursing students and third-year nursing students were invited to participate; 178 agreed to participate. PRIMARY OUTCOME MEASURE: Attitudes towards terminally ill patients were assessed using the Frommelt Attitudes Toward Care of the Dying Scale, Form B (FATCOD, Form B), as the primary outcome. Secondary measures were gender, age, year of study, number of terminally ill persons encountered, self-perceived palliative care nursing skills and subjective impact of instruction. RESULTS: Mean FATCOD, Form B score was 117.7 (SD: 9.8, median: 118.0). Better attitudes towards terminally ill patients were significantly associated with being aged 24-26 years (ß=6.97, 95% CI 2.00 to 11.95, p=0.006), year of study (ß=3.47, 95% CI 1.69 to 5.25, p<0.001), professional encounters with terminally ill patients (ß=3.59, 95% CI 2.23 to 4.95, p<0.001) and self-perceived palliative care nursing competence (ß=1.23, 95% CI 0.41 to 2.04; p=0.003). In the multivariate analysis, professionally encountering terminally ill patients remained significant (ß=3.00; 95% CI 1.43 to 4.57; p<0.001). CONCLUSIONS: Nursing students' attitudes towards caring for terminally ill patients were positive and improved as their year of study progressed. Professional exposure to terminally ill patients was the strongest factor, followed by private encounters, self-perceived palliative care nursing skills, year of study and age.

Observational Pain Assessment Instruments for Use With Nonverbal Patients at the End-of-life: A Systematic Review.

PURPOSE: To review studies pertaining to the reliability and validity of observational pain assessment tools for use with nonverbal patients at the end-of-life, a field of research not documented by previous systematic reviews. METHODS: Databases (PubMed, Embase, Epistemonikos, the Cochrane Library, and CINAHL) were systematically searched for studies from study inception to February 21, 2016 (update in May 9, 2018). Two independent reviewers screened study titles, abstracts, and full texts according to inclusion and exclusion criteria. Disagreements were resolved through consensus. Reviewers also extracted the psychometrics properties of studies of observational pain assessment instruments dedicated to a noncommunicative population in palliative care or at the end-of-life. A comprehensive quality assessment was conducted using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) to derive poor, fair, good or excellent ratings for the psychometric tests reported in each study. RESULTS: Four studies linked to 4 different tools met the inclusion criteria. Study populations included dementia, palliative care and severe illness in the context of intensive care. All the studies included in this review obtained poor COSMIN ratings overall. CONCLUSIONS: At this point, it is impossible to recommend any of the tools evaluated given the low number and quality of the studies. Other analyses and studies need to be conducted to develop, adapt, or further validate observational pain instruments for the end-of-life population, regardless of the disease.

Evaluation of decision support tools for patients with advanced cancer: A systematic review of literature.

OBJECTIVE: Medical decisions in the context of advanced cancer are more based on patient values and preferences than during the early stages of the disease. The implementation of shared decision-making is particularly important with an oncology palliative care population. However, few decision support tools focus on this population. This literature review aims to identify decision support tools related to palliative care for an oncological population and to assess their quality using International Patient Decision Aids Standards criteria. METHOD: The tools were identified through PsycINFO, EMBASE, MEDLINE, and CINAHL databases; the inventory of tools to assist the decisions of the Ottawa Hospital Research Institute; and through the register of Cochrane trials. They were then evaluated using the third version of the International Patient Decision Aids Standards instrument.ResultSixteen tools were identified, which targeted five types of cancer and addressed a particular decision or the use of chemotherapy in addition to palliative care. The quality of the reviewed tools varies.Significance of resultsClinicians can use four decision support tools related to palliative care with an oncology population that meet a certain quality standard. Further studies are needed to develop new decision support tools targeting more types of cancer and decisions.

Improving end-of-life care in an intensive care unit: a collaborative quality improvement project.

BACKGROUND: The shift from curative to palliative care is one of the most challenging situations in intensive care units. AIMS: The purpose of this collaborative project was to develop and implement a pilot intervention aimed at improving end-of-life care for patients in an open intensive care unit in Quebec City, Canada. METHODS: Individual and group interviews were first conducted to identify strengths and needs for improvement in care. After the main needs for improvement were determined, interventions were implemented in a concerted manner. These included training in end-of-life care as well as the adaptation of tools to promote communication with the patient and his or her family, or to facilitate interdisciplinary work. RESULTS: Preliminary results obtained through individual interviews indicate participant satisfaction with the project, but additional data need to be gathered to evaluate improvements in practice. CONCLUSIONS: Other collaborative quality improvement projects need to be implemented to improve end-of-life practices in intensive care units.

Development of a decision aid for cardiopulmonary resuscitation and invasive mechanical ventilation in the intensive care unit employing user-centered design and a wiki platform for rapid prototyping.

BACKGROUND: Upon admission to an intensive care unit (ICU), all patients should discuss their goals of care and express their wishes concerning life-sustaining interventions (e.g., cardiopulmonary resuscitation (CPR)). Without such discussions, interventions that prolong life at the cost of decreasing its quality may be used without appropriate guidance from patients. OBJECTIVES: To adapt an existing decision aid about CPR to create a wiki-based decision aid individually adapted to each patient's risk factors; and to document the use of a wiki platform for this purpose. METHODS: We conducted three weeks of ethnographic observation in our ICU to observe intensivists and patients discussing goals of care and to identify their needs regarding decision making. We interviewed intensivists individually. Then we conducted three rounds of rapid prototyping involving 15 patients and 11 health professionals. We recorded and analyzed all discussions, interviews and comments, and collected sociodemographic data. Using a wiki, a website that allows multiple users to contribute or edit content, we adapted the decision aid accordingly and added the Good Outcome Following Attempted Resuscitation (GO-FAR) prediction rule calculator. RESULTS: We added discussion of invasive mechanical ventilation. The final decision aid comprises values clarification, risks and benefits of CPR and invasive mechanical ventilation, statistics about CPR, and a synthesis section. We added the GO-FAR prediction calculator as an online adjunct to the decision aid. Although three rounds of rapid prototyping simplified the information in the decision aid, 60% (n = 3/5) of the patients involved in the last cycle still did not understand its purpose. CONCLUSIONS: Wikis and user-centered design can be used to adapt decision aids to users' needs and local contexts. Our wiki platform allows other centers to adapt our tools, reducing duplication and accelerating scale-up. Physicians need training in shared decision making skills about goals of care and in using the decision aid. A video version of the decision aid could clarify its purpose.

The Humanbecoming theory as a reinterpretation of the symbolic interactionism: a critique of its specific nature and scientific underpinnings.

Discussions about real knowledge contained in grand theories and models seem to remain an active quest in the academic sphere. The most fervent of these defendants is Rosemarie Parse with her Humanbecoming School of Thought (1981, 1998). This article first highlights the similarities between Parse's theory and Blumer's symbolic interactionism (1969). This comparison will act as a counterargument to Parse's assertions that her theory is original 'nursing' material. Standing on the contemporary philosophy of science, the very possibility for discovering specific nursing knowledge will be questioned. Second, Parse's scientific assumptions will be thoroughly addressed and contrasted with Blumer's more moderate view of knowledge. It will lead to recognize that the valorization of the social nature of existence and reality does not necessarily induce requirements and methods such as those proposed by Parse. According to Blumer's point of view, her perspective may not even be desirable. Recommendations will be raised about the necessity for a distanced relationship to knowledge, being the key to the pursuit of its improvement, not its circular contemplation.