Doris, une infirmière qui travaille en unité de soins palliatifs à Fréjus, se sépare de son époux et quitte son emploi ainsi que son domicile à la suite d'une rencontre amoureuse. Sa quête personnelle et sensuelle se construit au contact de la mort.
PURPOSE: Defining patients as 'terminally-ill' may be difficult. Therefore, determining when to shift the goal of care from curative to comfort care may be extremely challenging. The aim of this study was to merge when and how Registered Nurses (RNs) and Nurses' Assistants (NAs) adjust end-of-life care to pursue patient comfort at the end of their lives.
METHODS: A descriptive qualitative study based on multiple focus groups was performed in 2017 according to the COnsolidated criteria for REporting Qualitative research guidelines. In all, 25 RNs and 16 NAs across seven north-east Italian facilities that provide end-of-life care, voluntarily participated in the study. Each focus group was conducted following the same interview guide with open-ended questions, and was audiotaped. A thematic analysis was applied to interview transcripts.
RESULTS: The process of nursing care plan adjustment is based upon two main themes, around 'when' and 'how' to adjust it. Regarding when, 'Detecting the turning point', and 'Being ready to change continuously until the end' emerged as the main sub-themes. Regarding how, 'Weighing harms and benefits of nursing care interventions'; 'Advocating for patients' wishes', 'Sharing the adjustments inside the team at different levels', 'Involving family in the adjustments of nursing care'; and 'Allowing care to move away from evidence-based practice' were the sub-themes emerged.
CONCLUSIONS: Shedding light on the implicit decisional processes that inform care adjustments and the implementation of related strategies is essential to improve the quality of end-of-life care given that an early detection of the terminal phase has been reported to result in changes of care improving outcomes.
BACKGROUND: Medical Assistance in Dying comprises interventions that can be provided by medical practitioners to cause death of a person at their request if they meet predefined criteria. In June 2016, Medical Assistance in Dying became legal in Canada, sparking intense debate in the palliative care community.
AIM: This study aims to explore the experience of frontline palliative care providers about the impact of Medical Assistance in Dying on palliative care practice.
DESIGN: Qualitative descriptive design using semi-structured interviews and thematic analysis.
SETTINGS/PARTICIPANTS: We interviewed palliative care physicians and nurses who practiced in settings where patients could access Medical Assistance in Dying for at least 6 months before and after its legalization. Purposeful sampling was used to recruit participants with diverse personal views and experiences with assisted death. Conceptual saturation was achieved after interviewing 23 palliative care providers (13 physicians and 10 nurses) in Southern Ontario.
RESULTS: Themes identified included a new dying experience with assisted death; challenges with symptom control; challenges with communication; impact on palliative care providers personally and on their relationships with patients; and consumption of palliative care resources to support assisted death.
CONCLUSION: Medical Assistance in Dying has had a profound impact on palliative care providers and their practice. Communication training with access to resources for ethical decision-making and a review of legislation may help address new challenges. Further research is needed to understand palliative care provider distress around Medical Assistance in Dying, and additional resources are necessary to support palliative care delivery.
This article considers a particular aspect of palliative psychology that is inherent to the needs in the area of attitudes concerning Advance Healthcare Directives (AHDs) among Italian physicians and nurses after the promulgation of Law No. 219/2017 on AHDs and informed consent in 2018. The study utilized a mixed-method approach. The group of participants was composed of 102 healthcare professionals (63 females and 39 males). The quantitative part utilized the following scales: Attitudes toward Euthanasia, the Religious Orientation Scale, the Balanced Inventory of Desirable Responding, and the Testoni Death Representation Scale. The results were mostly in line with the current literature, especially concerning a positive correlation between religiosity and the participants' rejection of the idea of euthanasia. However, the qualitative results showed both positive and negative attitudes towards AHDs, with four main thematic areas: "Positive aspects of the new law and of AHDs", "Negative aspects of the new law and of AHDs", "Changes that occurred in the professional context and critical incidents", and "Attitudes towards euthanasia requests." It emerged that there is not any polarization between Catholics or religious people and secularists: Their positions are substantially similar with respect to all aspects, including with regard to euthanasia. The general result is that the law is not sufficiently understood, and so a quarter of the participants associate AHDs with euthanasia. Discussions on the opportunity for palliative psychologists to help health professionals to better manage these issues through death education courses are presented.
Objective: Develop and pilot-test a nurse-led primary palliative care intervention for patients with advanced hematologic malignancies.
Background: Nurse-led primary palliative care interventions may improve outpatient palliative care provision for patients with advanced hematologic malignancies.
Methods: This two-phase, single-arm pilot study involved patients with recurrent or resistant hematologic malignancies, their caregivers, and oncology clinicians at two US-based urban, university-affiliated oncology clinics. Measurements included feasibility (enrollment rates, intervention fidelity, and outcome assessment rates) and acceptability (patient, caregiver, and clinician surveys).
Results: In Phase 1 we developed and implemented an oncology nurse-led primary palliative care intervention for patients with recurrent or resistant hematologic malignancies and their caregivers. In Phase 2, we tested feasibility and acceptability. Twenty-six patient participants enrolled. Consent-to-approach rate was 78% and enrolled-to-consent rate was 84%. All enrolled participants received the intervention per protocol. Sixty-nine percent of patients and 100% of caregivers reported that the intervention helped them better understand the patient's illness and cope. Seventy-five percent of oncologists reported that the intervention improved their patients' quality of care, and 25% reported that it helped them take better care of patients.
Conclusions: Although our pilot of oncology nurse-led primary palliative care for patients with advanced hematologic malignancies met some of its secondary feasibility endpoints, it did not meet its primary feasibility endpoint (enrollment) and acceptability was mixed. Protecting nursing staff time, increasing patient and clinician involvement in intervention development, and identifying patients with highest supportive needs may improve feasibility and acceptability of future primary palliative care in hematologic malignancy trials.
Si, dans un premier temps, il peut paraître évident que ce sont les patients qui nous mettent en difficulté à travers le chemin douloureux de la maladie, il s’avère que les quelques cas qui ont engendré chez moi un ressenti de solitude, et par extension de désarroi, étaient tous liés à des incompréhensions avec les autres professionnels de santé en soins palliatifs. Accepter l’exercice d’écrire m’a permis de réfléchir rétroactivement sur les mécanismes en jeu, dans le but de progresser bien sûr, mais aussi d’éviter de nouvelles situations inconfortables.
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The aim of this study was to determine nurses’ opinions on Do Not Resuscitate (DNR) orders. This is a descriptive study. A total of 1250 nurses participated in this study. The mean age of participants was 34.5 ± 7.7 years; 92.6% were women; 56.4% had bachelor’s degrees, and 28.8% were intensive care, oncology, or palliative care nurses. Most participants (94.3%) agreed that healthcare professionals involved in DNR decision-making processes should have ethical competence, while they were mostly undecided (43%) about the statement whether or not DNR should be legal. More than half the participants (60.2%) disagreed with the idea that DNR implementation causes an ethical dilemma. Participants’ opinions on DNR decisions significantly differed according to the number of years of employment and unit of duty. The results showed that most of the nurses had positive attitudes towards DNR orders despite it being illegal. Future studies are needed to better understand family members’ and decision makers’ perceptions of DNR orders for patients.
Background: There are no data on the provision of palliative nursing care in Egyptian adult intensive care units (ICUs). The Palliative and End-Of-Life (PEOL) Care Index is reliable and content valid; however, its construct and criterion validities have not been examined.
Aims and objectives: First, to assess palliative care education, practice, and perceived competence among adult ICU nurses in Egypt. Second, to explore factors related to palliative care nursing practice and perceived competence. Third, to assess the construct and criterion validities of the PEOL Care Index.
Design: A cross-sectional survey.
Methods: Nurse managers and staff nurses in 33 adult ICUs completed self-administered questionnaires. The questionnaires assessed nurses' palliative care practice and perceived competence. A multilevel regression analysis was used to determine the best predictors of palliative care practice and perceived competence. Theory evidence construct validity and predictive criterion validity of the PEOL Care Index were examined.
Results: Thirty-three nurse managers and 403 staff nurses participated in the study—response rate = 100% and 72.5%, respectively. On a 0-100 scale, the mean scores of undergraduate education, practice, and perceived competence were 54.0 ± 18.7, 49.7 ± 18.1, and 54.5 ± 17.0, respectively. Palliative care practice was significantly related to receiving in-service training on palliative care or end-of-life care (regression coefficients: 3.39), higher job satisfaction (0.97), and higher organizational support (1.85). Palliative care perceived competence was significantly related to older nurses' age (0.20), higher job satisfaction (0.97), and higher palliative care undergraduate education (0.63).
Conclusions: Palliative care education, practice, and perceived competence among adult ICU nurses in Egypt are inadequate, especially in terms of spiritual and cultural care. The PEOL Care Index is construct and criterion valid.
Relevance to clinical practice: Palliative care education should begin in nursing schools and extend through clinical in-services. Guidelines should be developed to maximize staff collaboration and the utilization of chaplains in ICUs.
Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
BACKGROUND: Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in the final stages of their life. Lack of knowledge of and negative attitude palliative care among nurses is one of the most common barriers to quality palliative care. This study, therefore, aimed to assess nurses' knowledge about palliative care and attitude toward end-of-life care in public hospitals in Wollega zones, Ethiopia.
METHODS: A multicenter institutional-based cross-sectional study design was employed to collect data from 372 nurses working in public hospitals in Wollega zones from October 02-22, 2019. A self-administered questionnaire with three different parts: Demographic characteristics of nurses, the Palliative Care Quiz for Nursing (PCQN), and the Frommelt Attitudes Towards Care of the Dying (FATCOD). SPSS version 21 was used for analysis used for data analysis. The binary logistic regression test was used for analysis at p < 0.05.
FINDINGS: Our final sample size was 422 nurses (response rate = 88%). With the mean total PCQN scores (9.34), the majority of them showed an inadequate level of knowledge about palliative care. The mean total FATCOD scores (79.58) displayed a positive attitude toward end-of-life care, with 52% of respondents eager to care for a dying person and their family. Nurses who had PC service experience [AOR = 1.94 CI (1.10-3.42), p = 0.02] and had ever attended training/lecture on PC [AOR = 1.87 CI (1.01-3.46), p = 0.04] were independently associated with nurses' knowledge about PC. Similarly, nurses who had no PC service experience [AOR = 0.41, CI (0.21-0.79), p = 0.008], who read articles/brochures about PC [AOR = 1.94, CI (1.11-3.39), p = 0.01] and had provided care for a smaller number of terminally ill patients [AOR = 1.74, CI (1.01-2.97), p = 0.04] were significantly associated with nurses' attitude towards end-of-life care.
CONCLUSION: The study highlighted that nurses' knowledge about palliative care is inadequate, and showed a less favorable attitude toward end-of-life care. The findings also provide evidence for greater attentions and resources should be directed towards educating and supporting nurses caring for patients with palliative care needs in Wollega Zones.
Burnout, a condition characterized by emotional exhaustion, depersonalization, and decreased personal accomplishment, has been studied in many disciplines in health care, including nursing, medicine, and social work. The purpose of this study was to examine the relationship between perceived organizational support, coworker social support, the nursing practice environment, and nurse demographics (age, years of nursing experience, education level, marital status, and sex) on burnout in a national sample of palliative care nurses. The study aims were (1) to examine the relationship between perceived organizational support, coworker social support, and nursing practice environment on burnout in palliative care nurses; (2) to examine the relationship between age, years of nursing experience, education level, marital status, and sex on burnout in palliative care nurses; and (3) to examine potential moderators (perceived organizational support and coworker social support) on the relationship between demographic characteristics and palliative care nurse burnout. A convenience sample of 73 Hospice and Palliative Nurses Association registered nurses who were bedside caregivers was recruited from Hospice and Palliative Nurses Association's membership. Data were analyzed using Pearson correlation and regression modeling. Findings indicated palliative care nurses had moderate to high levels of burnout. There was a negative correlation between burnout and perceived organizational support, and between burnout and coworker social support. The nursing practice environment of palliative care nurses was favorable; perceived organizational support and coworker social support were not moderators for demographics of age and years of experience and their relationship to burnout.
The number of children living with chronic, complex medical needs is steadily increasing secondary to advances in clinical technology and disease management. As a result, patient care requirements become multifaceted with the need for specific therapies and treatments that require extensive knowledge and skills. As these children are managed throughout the health care continuum, nurses are challenged to offer specialized care for complex conditions, while meeting the personnel and financial demands of the changing health care environment. It is well established that medically complex children can put a burden on family life, resulting in compassion fatigue for nonclinical caregivers. It is possible that, secondary to frequent and lengthy hospitalizations, nurses may also be affected. Therefore, a review of compassion fatigue or professional burnout in nurses caring for medically complex children was conducted. Appropriate identification of nurses at risk for compassion fatigue is imperative to provide the necessary interventions and support. Reducing compassion fatigue is likely to improve outcomes, including nursing turnover, nursing professional engagement, and job satisfaction, thus improving the care delivery experience for children with complex conditions.
This article presents the case of a mother of young children who has terminal stage IV cancer with whom providers had not discussed goals of care and prognostication. Communications about prognostication and goals of care are commonly initiated by physicians. Adolescents and young and middle-age adults with complex chronic or terminal illness often are not provided with timely, clear, complete information or palliative care support. Early palliative care for chronically ill patients facilitates discussions of prognostication and goals of care, in addition to providing symptom management. Such discussions do not diminish hope but rather allow patients to adjust hope to attain an optimal quality of life. Nurses can become active, confident advocates for patients with terminal illness of any age, and they are well positioned to assess patients and engage in goals of care and end-of-life conversations. It is especially important that palliative care nurses promote and maintain these early and comprehensive discussions during the COVID-19 pandemic because this population is at a high risk of complications from the coronavirus.
Introduction: La transfusion de concentrés plaquettaires en fin de vie en onco-hématologie ne fait pas l’objet de recommandations et dépend des représentations partagées par les patients, les infirmiers et les hématologues. L’objectif de cette étude est de décrire ces représentations de la transfusion plaquettaire dans un contexte d’hémopathie grave et avancée à travers les représentations sociales de ses protagonistes.
Méthodes: Une étude qualitative, utilisant la méthode du réseau d’association et incluant trois groupes de 15 participants (patients en phase avancée d’une hémopathie maligne, régulièrement transfusés en plaquettes, infirmiers et médecins) issus de quatre centres d’hématologie a été conduite entre février et avril 2019. L’analyse a été réalisée avec le logiciel IraMuTeQ.
Résultats: Les patients attendent de la transfusion plaquettaire un impact bénéfique direct sur leur santé et mettent en avant l’importance de la relation humaine. Les infirmiers visent le bien-être du patient, dans son individualité, et le respect du protocole transfusionnel. Les médecins cherchent à soulager les symptômes en prenant en compte une multitude de facteurs décisionnels. La classification hiérarchique descendante permet de nuancer les résultats précédents en individualisant quatre orientations différentes, indépendantes des groupes de participants : la dépendance, la singularité, la subjectivité et la neutralité.
Discussion: La perception des représentations sociales liées à la transfusion plaquettaire en fin de vie devrait permettre d’adapter le discours à l’orientation préférentielle de son interlocuteur et constituer un atout dans la discussion des objectifs de soins avec les patients, comme entre professionnels de santé.
Palliative care nurses are exposed to hard situations, death, and duel feelings in their daily practice. These, and other work stressors, can favor burnout development. Thus, it is important to analyze the prevalence and risk factors of burnout in palliative care nurses and estimate its prevalence. A systematic review and meta-analysis was done with quantitative primary studies. n = 15 studies were included with n = 6 studies including information for the meta-analysis. The meta-analytic prevalence estimation of emotional exhaustion was 24% (95% CI 16-34%), for depersonalization was 30% (95% CI 18-44%) and for low personal accomplishment was 28% with a sample of n = 693 palliative care nurses. The main variables related with burnout are occupational variables followed by psychological variables. Some interventions to improve working conditions of palliative care nurses should be implemented to reduce burnout.
AIMS AND OBJECTIVES: The aim was to explore how nurses experience compassionate care for patients with cancer and family caregivers in different phases of the palliative pathway.
BACKGROUND: Compassion is fundamental to palliative care and viewed as a cornerstone of high-quality care provision. Healthcare authorities emphasize that patients should have the opportunity to stay at home for as long as possible. There are, however, care deficiencies in the palliative pathway.
DESIGN: This study employed a qualitative design using focus groups and a hermeneutic approach.
METHODS: Four focus groups with three to seven female nurses in each group were conducted in Mid-Norway in 2018. Nurses' ages ranged from 28-60 years (mean age = 45 years), and they were recruited through purposive sampling (N = 21). Compassionate care was chosen as the theoretical framework. Reporting followed the COREQ guidelines.
RESULTS: Three themes expressing compassionate care related to different phases of the pathway were identified: (a) information and dialogue, (b) creating a space for dying and (c) family caregivers' acceptance of death.
CONCLUSIONS: This study showed that it was crucial to create a space for dying, characterized by trust, collaboration, good relationships, empathy, attention, silence, caution, slowness, symptom relief and the absence of noise and conflict.
RELEVANCE TO CLINICAL PRACTICE: The quality of compassion possessed by individual practitioners, as well as the overall design of the healthcare system, must be considered when creating compassionate care for patients and their family caregivers. Nursing educators and health authorities should pay attention to the development of compassion in education and practice. Further research should highlight patients' and family caregivers' experiences of compassionate care and determine how healthcare systems can support compassionate care.
AIMS: To examine hospital nurses' perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution.
DESIGN: A qualitative interview study.
METHODS: Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers.
RESULTS: Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses' descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients.
CONCLUSION: Nurses described behaviour that reflected a supporting role in shared decision-making about patients' life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making.
IMPACT: Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses' involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role.
OBJECTIVE: The aim of this study was to understand the attitudes of front-line clinical nurses toward hospice care in the fight against the COVID-19 pandemic, to provide a source of reference for hospice care education and training in hospitals treating patients with COVID-19.
METHOD: Front-line nurses from a designated COVID-19 hospital in Wuhan, China, participated. Participants completed the Chinese versions of the General Information Questionnaire, the Frommelt Attitudes Toward Care of the Dying Scale, the Jefferson Scale of Empathy, and the General Self-Efficacy Scale.
RESULTS: A total of 149 questionnaires were included in the analysis. The median total hospice care attitudes score was median 102.00 (interquartile range, 95.5-120.50). The nurses' attitudes toward hospice care were significantly associated with their age, knowledge of hospice care, level of empathy, and self-efficacy.
CONCLUSION: The attitudes of front-line nurses toward hospice care need to be improved. Hospital departments should establish an effective public health emergency strategy, provide training to increase front-line nurses' knowledge and practical experience of hospice care, cultivate nurses' empathy, and enhance their sense of self-efficacy, in order to improve the quality of hospice care for patients and their families.
Introduction : En France, un quart des décès ont lieu en EHPAD (établissements d’hébergement pour personnes âgées dépendantes), soit environ 150 000 décès par an (DRESS 2018). Un total de 60 % de résidents nécessitent des soins palliatifs dans ces structures or il existe actuellement un réel déficit de leur accompagnement. Un total de 24 % d’entre eux se trouveraient encore dans un réel inconfort lors de leur dernière semaine de vie (rapport Sicard 2012).
Objectif : Cette étude visait à explorer le ressenti des équipes soignantes concernant la prise en charge de la douleur des patients en soins palliatifs vivant en EHPAD en vue d’améliorer celle-ci.
Matériel et méthode : Il s’agissait d’une étude qualitative par entretiens individuels semi- directifs, recueillant l’opinion de six médecins et neuf infirmiers travaillant dans sept EHPAD.
Résultats : Les soignants se sentaient généralement en difficulté lors de la prise en charge de la douleur des résidents en fin de vie. Ils attribuaient le plus souvent ces difficultés à un manque de formation en douleur et en soins palliatifs et à un manque de moyens humains : absence d’infirmièr(e) sur place la nuit, accès difficile aux médecins traitants, faibles effectifs de soignants. Dans ce contexte, leurs ressentis étaient très variés avec une large palette émotionnelle de sentiments rapportés : d’une forte implication émotionnelle ou grande empathie, parfois sources de souffrance éthique ; à une réelle distanciation qui semblait plus protectrice.
Conclusion : Les principales pistes d’amélioration de la prise en charge de la douleur des patients en fin de vie en EHPAD identifiées par les soignants dans cette étude étaient le développement des formations et l’augmentation des moyens humains.