BACKGROUND: Little is known about the attitudes and practices of intensivists working in Lebanon regarding withholding and withdrawing life-sustaining treatments (LSTs). The objectives of the study were to assess the points of view and practices of intensivists in Lebanon along with the opinions of medical, legal and religious leaders regarding withholding withdrawal of life-sustaining treatments in Lebanese intensive care units (ICU).
METHODS: A web-based survey was conducted among intensivists working in Lebanese adult ICUs. Interviews were also done with Lebanese medical, legal and religious leaders.
RESULTS: Of the 229 survey recipients, 83 intensivists completed it, i.e. a response rate of (36.3%). Most respondents were between 30 and 49 years old (72%), Catholic Christians (60%), anesthesiologists (63%), working in Beirut (47%). Ninety-two percent of them were familiar with the withholding and withdrawal concepts and 80% applied them. Poor prognosis of the acute and chronic disease and futile therapy were the main reasons to consider withholding and withdrawal of treatments. Ninety-five percent of intensivists agreed with the "Principle of Double Effect" (i.e. adding analgesia and or sedation to patients after the withholding/withdrawal decisions in order to prevent their suffering and allow their comfort, even though it might hasten the dying process). The main withheld therapies were vasopressors, respiratory assistance and CPR. Most of the respondents reported the decision was often to always multidisciplinary (92%), involving the family (68%), and the patient (65%), or his advance directives (77%) or his surrogate (81%) and the nurses (78%). The interviewees agreed there was a law governing withholding and withdrawal decisions/practices in Lebanon. Christians and Muslim Sunni leaders declared accepting those practices (withholding or withdrawing LSTs from patients when appropriate).
CONCLUSION: Withholding and withdrawal of LSTs in the ICU are known concepts among intensivists working in Lebanon and are being practiced. Our results could be used to inform and optimize therapeutic limitation in ICUs in the country.
BACKGROUND: Nurses have a primary role in providing palliative and end-of-life (EOL) care. Their knowledge of EOL care, attitudes toward care of the dying, and palliative care self-efficacy are important in care delivery. Little is known regarding palliative care preparedness among Mongolian nurses. This study examines palliative care knowledge, attitude towards death and dying, and self-efficacy among Mongolian nurses, and examines predictors of self-efficacy.
METHODS: A cross-sectional descriptive study was conducted. Participants were 141 nurses employed at the National Cancer Center in Mongolia. Data was collected using a self-administered questionnaire.
RESULTS: The median score for the knowledge of palliative care was 8.0/20. "Psychosocial and spiritual care" was the lowest score on the palliative care knowledge subscale. The mean score for attitude toward care of the dying was 69.1%, indicating positive attitudes. The mean score for the palliative care self-efficacy was 33.8/48. Nurses reported low self-efficacy toward communicating with dying patients and their families, and managing delirium. Palliative care knowledge and duration of experience as an oncology nurse significantly predicted self-efficacy toward palliative care, accounting for 14.0% of the variance.
CONCLUSIONS: Palliative education for nurses should address the knowledge gaps in EOL care and focus in increasing palliative care self-efficacy. Considering palliative care knowledge and nursing experience as an oncology nurse were significant predictors of self-efficacy toward palliative care, more effort is needed to fill the knowledge gaps in EOL care among nurses, especially for less experienced nurses.
BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood.
OBJECTIVE: To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system.
METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN's role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs.
CONCLUSIONS: Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.
Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient's preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients.
Providing quality care for those dying in hospital is challenging for health professionals who receive little training in this. "End of Life Essentials" (EOLE) was developed to address gaps in health professionals' knowledge, skills and confidence in end-of-life care via the provision of online learning modules and practice resources. This study aimed to determine whether respondents could describe clinical practice change as a result of module completion. Deidentified data were collected between October and November 2018 from learners registered for the online learning modules. Both quantitative and qualitative data were extracted and analysed. The survey design and conduct were reviewed, and ethical approval was obtained. Although the response rate was very low, results from n = 122 learners show improvements in knowledge, skills, awareness and confidence as a result of the undertaking of the learning modules. Two thirds self-reported practice changes (71%, n = 59) following the education, with "communication" cited most commonly (n = 19). The findings suggest that the EOLE education modules can help to improve end-of-life care by increasing health professionals' awareness of good practice as well as their knowledge, skills and confidence. Online learning has also been reinforced as an appropriate forum for end-of-life education. Following education, implementing what has been learned occurs more easily at a personal level rather than at a team and organisational level. Barriers to and enablers of clinical practice change in hospital are described, including the fact that the organisation may not be responsive to changes or have the relevant resources to support change.
Critical care clinicians strive to reverse the disease process and are frequently faced with difficult end-of-life (EoL) situations, which include transitions from curative to palliative care, avoidance of disproportionate care, withholding or withdrawing therapy, responding to advance treatment directives, as well as requests for assistance in dying. This article presents a summary of the most common issues encountered by intensivists caring for patients around the end of their life. Topics explored are the practices around limitations of life-sustaining treatment, with specific mention to the thorny subject of assisted dying and euthanasia, as well as the difficulties encountered regarding the adoption of advance care directives in clinical practice and the importance of integrating palliative care in the everyday practice of critical-care physicians. The aim of this article is to enhance understanding around the complexity of EoL decisions, highlight the intricate cultural, religious, and social dimensions around death and dying, and identify areas of potential improvement for individual practice.
BACKGROUND: Early palliative care referral for patients with advanced cancer has demonstrable benefits but is underutilized. We sought to characterize medical oncologists' perceptions about palliative care referral in their clinical practices.
METHODS: We conducted 4 focus groups with a national sample of medical oncologists to elicit perspectives about the optimal timing of and barriers to palliative care referral for patients with cancer. We used qualitative content analysis to uncover themes related to early integration of palliative care into standard oncologic practice.
RESULTS: Study participants readily acknowledged the evidence supporting early palliative care referral. However, medical oncologists identified patient-centered and physician-centered barriers to widespread adoption of early palliative care. Patient-centered barriers included patients' and families' perceptions or misperceptions of the role of palliative care. Additionally, physicians themselves described acting as a barrier to palliative care referral because they were concerned that palliative care physicians may interfere with the plan of care, or offer options that were not endorsed by the medical oncologist. Medical oncologists depicted themselves having authority over the timing of palliative care referral, and as granting limited autonomy to other clinical team members in counseling patients about advanced care planning.
CONCLUSIONS: Medical oncologists are hesitant to adopt the practice of early palliative care referral because they are concerned that other physicians may disrupt a patient's treatment plan. Physician-centered barriers may delay integration of palliative care, and future efforts to promote a collaborative approach to advanced care planning may improve patient-centered outcomes through access to early palliative care.
Studies on end-of-life care reveal different practices regarding withholding and/or withdrawing life-sustaining treatments between countries and regions. Available data about physicians' practices regarding end-of-life care in ICUs in Egypt is scarce. This study aimed to investigate physicians' attitudes toward end-of-life care and the reported practice in adult ICUs in Ain Shams University Hospitals, Cairo, Egypt. 100 physicians currently working in several ICU settings in Ain Shams University Hospitals were included. A self-administered questionnaire was used for collection of data. Most of the participants agreed to implementation of "do not resuscitate" (DNR) orders and applying pre-written DNR orders (61% and 65% consecutively), while only 13% almost always/often order DNR for terminally-ill patients. 52% of the participants agreed to usefulness of limiting life-sustaining therapy in some cases, but they expressed fear of legal consequences. 47% found withholding life-sustaining treatment is more ethical than its withdrawal. 16% almost always/often withheld further active treatment but continued current ones while only 6% almost always/often withdrew active therapy for terminally-ill patients. The absence of legislation and guidelines for end-of-life care in ICUs at Ain Shams University Hospitals was the main influential factor for the dissociation between participants' attitudes and their practices. Therefore, development of a consensus for end-of-life care in ICUs in Egypt is mandatory. Also, training of physicians in ICUs on effective communication with patients' families and surrogates is important for planning of limitation of life-sustaining treatments.
Context: In most jurisdictions where medical-aid-in-dying (MAiD) is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD.
Methods: We developed a questionnaire for mental health care providers to better understand their perspectives related to ethical issues in relation to MAiD in the context of severe and persistent suffering caused by mental illness. We used a mixed-methods survey approach, using a concurrent embedded model with both closed and open-ended questions.
Findings: 477 healthcare providers from the province of Québec (Canada) completed the questionnaire. One third of the sample (34.4%) were nurses, one quarter psychologists (24.3%) and one quarter psycho-educators (24%). Nearly half of the respondents (48.4%) considered that people with a severe mental illness should be granted the right to opt for MAiD as a way to end their suffering. Respondents were more likely to feel comfortable listening to the person and participating in discussions related to MAiD for a mental illness than offering care or the means for the person to access MAiD. Most (86.2%) reported that they had not received adequate/sufficient training, education or preparation in order to address ethical questions surrounding MAiD.
Conclusions: The findings highlight how extending MAiD to people with a mental illness would affect daily practices for mental healthcare providers who work directly with people who may request MAiD. The survey results also reinforce the need for adequate training and professional education in this complex area of care.
BACKGROUND: End-of-life care is high on policy and political agendas in the UK and internationally. Nurses are at the forefront of this, caring for dying patients, 'managing' the dead body, and dealing with the corporeal, emotional and relational dimensions of death. Little is known about nurses' prior or early professional experiences of and reactions to death, dying and the corpse and how these might influence practice.
AIMS: To appraise the international literature on nurses' early experiences of death, dying and the dead body, to better understand how these might influence subsequent practice, and how this might inform our teaching of death, dying and last offices.
METHODS: A scoping review was undertaken of peer-reviewed publications between, 2000 and 2019, which included nurses working in hospital, care homes and the community. Medline, PubMed, PsychINFO and CINAHL databases were searched and 23 papers meeting the inclusion criteria were read. Arksey and O'Malley's (2005) five-stage approach was adopted to scope the relevant international literature, using where relevant the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Selected papers were independently reviewed and subjected to thematic analysis, leading to the generation of five overarching themes.
RESULTS: The five themes were: different philosophies of care; relationships; knowledge; impact of death; and giving care. The studies came from diverse geographical locations across different settings and were primarily qualitative in design.
CONCLUSIONS: Students and registered nurses are impacted both positively and negatively by their early encounters with death and dying. Good communication with patients, families and between professionals, understanding of what constitutes a 'good' death, and high-quality mentorship and support were of particular importance.
BACKGROUND: Worldwide, pharmacy practice is changing to include new roles and responsibilities. Laws enabling the implementation of assisted dying are expanding in international jurisdictions. Pharmacy practice in assisted dying is subsequently expanding. However, studies of how pharmacists experience their practice when engaged in assisted dying are absent. To progress research into the lived experiences of pharmacists practicing in assisted dying, the development of an inquiry framework to guide such research is the first step.
OBJECTIVE: The objective was to develop a theoretical framework of inquiry for use in subsequent continuing research which may explore the actual experience of pharmacy practice in assisted dying.
METHODS: Perspectives were gathered from expert and senior pharmacists who were anticipating the imminent implementation of assisted dying practice. Analysis focused on understanding what aspects of practice experience were important to them. Interview-conversations centred on the question: If you had the chance to talk to experienced pharmacist practitioners who have been involved in the practice of assisted dying, what aspects regarding their experiences, would you like to know about? A conventional approach to qualitative content analysis was utilized to analyze the data.
RESULTS: Findings summarized questions posed by pharmacists contemplating the implementation of assisted dying practice. These perspectives formed the foundation of a theoretical inquiry framework constituted by 8 inter-related dimensional range-continuums. Each range-continuum, designed to explore the lived experiences of pharmacists in practice, is defined. Examples of how the inquiry dimensions will be used to inform future exploratory research are offered within the framework.
CONCLUSIONS: The theoretical inquiry framework will be used to develop knowledge for pharmacists contemplating participation (or not) in assisted dying practice. It is timely to progress research that reveals the informed experiences of pharmacists that are actually practicing in this area. The framework may be adapted for researching pharmacists' experience in other practice areas and contexts.
District nurses are core providers of palliative care, yet little is known about the way that they provide care to people at home. This study aimed to investigate the role and practice of the district nurse in palliative care provision. This was an ethnographic study, with non-participant observation of district nurse-palliative care patient encounters, and post-observation interviews. District nurse teams from three geographical areas in northwest England participated. Data were analysed iteratively, facilitated by the use of NVivo, using techniques of constant comparison. Some 17 encounters were observed, with 23 post-observation interviews (11 with district nurses, 12 with patients/carers). Core themes were ‘planning for the future’ and ‘caring in the moment’. District nurses described how they provided and planned future care, but observations showed that this care focused on physical symptom management. District nurses engaged in friendly relationship building, which allows detailed management of symptomatology, but with little evidence of advance care planning.
The escalating number of foodborne diseases and food poisoning outbreaks demand a better call for improved food-handling practices. Hospices are typically described as nongovernmental organizations that offer palliative care to terminally ill patients. The majority of hospice food handlers are not trained in food safety aspects, and services are offered on a voluntary basis. In this study, a descriptive survey design comprising of semistructured questionnaire was utilized to assess the knowledge, attitudes, and practices of the hospice food handlers (n = 100) in hospices around Central South Africa. More than half of the participants (68%) had not taken basic food safety training. The average percentage of the correct answers on the knowledge questionnaire was 66.8%. The participants had a mean age of 35 years (SD = 9.27). Attendance of food safety course had a significant effect on both the practices of using gloves to touch or distribute unwrapped foods ( 2 = 8.411, p-value = .012), and washing hands after using gloves ( 2 = 12.560, p-value = .001). The overall KAP mean score was 78.38. A statistically significant difference was found between the trained and untrained food handlers regarding food safety knowledge (p < .001). There was substantial lack of knowledge regarding the correct temperature for a refrigerator including hot ready-to-eat food.
The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians’ lack of time, difficulties in finding the right time to discuss ICD deactivation, patients’ reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.
During the Covid-19 pandemic, a strategy to minimise face-to-face (FtF) visits and limit viral spread is essential. Video consultations offer clinical assessment despite restricted movement of people.
We undertook a rapid literature review to identify the highest currently available level of evidence to inform this major change in clinical practice. We present a narrative synthesis of the one international and one national guideline and two systematic reviews—all published within the last 18 months.
The global evidence appears to support video consultations as an effective, accessible, acceptable and cost-effective method of service delivery. Organisations must ensure software is simple, effective, reliable and safe, with the highest level of security for confidentiality.
Although video consultations cannot fully replace FtF, they can radically reduce the need for FtF and the risk of Covid-19 spread in our communities while maintaining high standards of care. For patient safety, it will be critical to follow the WHO guidance regarding: a standard operating procedure; clinical protocols for when video consultations can (and cannot) be used; policies to ensure equity of access in disadvantaged populations; adequate staff training; and administrative support to coordinate appointments.
Background: Staff nurse clinical leadership is a relatively new concept that includes the elements of collaboration, coordination, patient advocacy, and often quite autonomous decision-making required of palliative care nurses. Staff nurses need structural and psychological empowerment to develop as clinical leaders.
Aims: The aim of this study was to establish baseline data regarding the self-perceived structural and psychological empowerment experienced by New Zealand hospice staff nurses and their ability to practise as clinical leaders.
Methods: An explanatory sequential mixed-methods design was used, which included questionnaires measuring structural and psychological empowerment and clinical leadership behaviours and focus group discussions.
Findings: Survey respondents reported that they were moderately psychologically and sometimes or rarely structurally empowered and felt that they can practise as clinical leaders most of the time. Two themes were identified from the focus groups.
Conclusion: New Zealand staff hospice nurses felt that—despite feeling only moderately psychologically empowered, and only sometimes or rarely structurally empowered—they practise as clinical leaders most of the time.
Cet ouvrage aborde la nécessité de réfléchir ensemble au sens du prendre soin et du fait d'être soigné pour mettre en valeur l'importance d'une implication personnelle de chacun dans la relation en vue de soins de qualité.
[Extrait Résumé éditeur]
Introduction : En France, plus de 618 000 résidents vivent en Établissement pour personnes âgées dépendantes (EHPAD) et plus de 125 000 y décèdent chaque année. Les difficultés éthiques y sont accrues en raison de la polypathologie et des troubles cognitifs. Les prises en charge des résidents en fin de vie ont été l’objet de recommandations de bonnes pratiques. Pourtant, les modalités de mise en oeuvre des soins palliatifs en EHPAD restent peu étudiées.
Objectifs : L’objectif était d’évaluer les pratiques de soins palliatifs en EHPAD.
Méthodes : Quatre Équipes mobiles de soins palliatifs (EMSP) et le Réseau qualité des établissements de santé de Bourgogne-Franche-Comté (REQUA) ont proposé un audit rétrospectif de dossiers dans le cadre d’une Évaluation des pratiques professionnelles (EPP) à 11 EHPAD volontaires de leur région.
Résultats : Dans ces établissements (1 596 places au total), 475 décès étaient survenus l’année précédant le recueil. Un échantillon de 295 dossiers était audité. Dans 91 % des cas les décès étaient survenus au sein des établissements. Parmi les 221 résidents décédés de façon non soudaine, lors de la dernière semaine de vie, 63 % avaient eu au moins une évaluation de la douleur, 47 % une contention (y compris barrières) et 36 % une hydratation artificielle. Dix pour cents des dossiers comportaient la trace d’une information des résidents à propos de leur état de santé. Conclusion : Ce travail identifie des axes d’amélioration des pratiques portant sur la prise en charge des douleurs, l’implication des résidents dans leur propre projet de fin de vie, et la nécessité d’une valorisation institutionnelle de l’interdisciplinarité.
Bien que prévu par la loi et quels qu’en soient les motifs, le refus de soins émanant du patient déstabilise les soignants. Pour ces derniers, il est important de comprendre les attitudes vis-à-vis de ce refus, les liens avec les pratiques professionnelles afin de proposer des repères pour une démarche clinique.