Les soignants sont formés à agir et à se situer au sein d'une relation par nature asymétrique. L'auteure s'attache à montrer l'importance d'un aspect laissé dans l'ombre : la possibilité de faire vivre cette relation dans une dynamique de réciprocité. Nous avons généralement l'habitude de considérer la relation de soin dans sa structure asymétrique : d'un côté un soignant agissant, responsable, et de l'autre, un patient, passif, vulnérable.
C'est oublier de considérer toute la complexité de ce qui s'échange et se partage entre soignants et soignés. En privilégiant une mise en mot proche de son expérience d'infirmière en soins palliatifs, l'auteure formule les enjeux éthiques de la réciprocité, liés à cette façon de concevoir la relation dans l'activité du soin et de la vivre effectivement.
OBJECTIVES: In Singapore, the core curriculum for end-of-life (EOL) care used in nurse training courses is limited. Only 45% of nurses indicated familiarity with inpatient palliative care. Nurses who lack skills in palliative care may develop anxiety and negative attitudes towards caring for dying patients. We explored whether a two-day, multimodal EOL care workshop could reduce nurses' death anxiety and improve nurses' skills, knowledge, and attitude towards palliative care.
METHODS: Forty-five nurses participated in the workshop. At baseline before and at six weeks after, a 20-item knowledge-based questionnaire and the Death Attitude Profile-Revised (DAP-R) were administered. Six weeks post-workshop, in-depth interviews were conducted. We employed descriptive statistics, student paired samples t-test and inductive thematic analysis.
RESULTS: There was a significant improvement in nurses' knowledge score (p < 0.01) and reduction in their death anxiety score (p < 0.01). Fear of Death (p = 0.025) and Death Avoidance (p = 0.047) sub-scores decreased significantly. However, the remaining domains such as Neutral Acceptance, Approach Acceptance, and Escape Acceptance did not show any significant difference, although Escape Acceptance showed a trend towards a reduced score (p = 0.063). After the workshop, more nurses adopted the Neutral Acceptance stance (76.2%), and none of them fell into the Fear of Death subdomain. Most nurses interviewed reported a positive change in their knowledge, attitudes, and practice even after the workshop.
SIGNIFICANCE OF RESULTS: The multimodal palliative care workshop was useful in improving nurses' EOL knowledge and reducing their anxiety towards death. The positive change in nurses' attitudes and practices were noted to be sustained for at least six weeks after the intervention.
Palliative care is a crucial component in improving peoples' end-of-life period. It is important to understand the wishes of people at the end of life and the perceptions of their healthcare providers regarding these wishes. As nurses play a key role in patient care, in this study we set out to determine nurses' perceptions regarding what constitutes a "good death", comparing what they thought their older patients would prefer to their own preferences for their own end-of-life care. Questionnaires asking about various options of end-of-life care were distributed to nurses, and they were asked how they thought older people would respond to each of the questions and what their own preferences would be if they were terminally ill. In total, 656 participants were enrolled and they rated relief from suffering as the most important component, both for themselves and for those in their care. More than 80% of nurses agreed with all of the statements on the questionnaire. However, some of the nurses' preferences for their own end of life differed from those they expected their patients to value.
It is recommended that advance care planning take place across the lifespan. Rural populations have a heightened risk for poor quality and high cost of end-of-life care. A doctoral project was completed to assess rural nurses’ knowledge, attitudes, and experiences with advance directives using the Knowledge, Attitudinal, and Experimental Surveys on Advance Directives. Descriptive statistics were used for analysis. Participants were nurses who practice in rural settings (N = 22). The average age was 46.4 years; all were white (n = 22), and the majority were baccalaureate prepared (n = 12). Practice settings were primarily in home care and hospice. Knowledge scores on advance directives were low (57%). Nurses felt confident in counseling and initiating discussions with patients and families. Less than one-half of the nurses reported they feel part of the advance care planning team. The majority reported advance directive resources and mentorship of younger nurses would be beneficial and indicated the need for additional education, training, knowledge, time, and support to better assist with advance care planning. Project results and recommendations were presented to the participating health care organization. Recommendations included workplace education, support, mentorship, resources, and education on cultural sensitivity using the rural nursing theory.
End-of-life care in the neonatal intensive care unit (NICU) is one of the most challenging practices for nurses. Negative emotions associated with moral distress often cause care to be incomplete or nurse disengagement. Emotional intelligence in nurses holds potential to address this issue, while improving patient outcomes. The purpose of this study was to critically appraise the evidence about emotional intelligence in nursing and to explore the relationship between emotional intelligence, moral distress in NICU nurses, end-of-life care, and other priority nurse and patient outcomes. A PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses)–structured integrative review was conducted, and CINAHL, Ovid, PubMed, and other databases were searched. Twelve studies were identified as relevant to this review after exclusion criteria were applied. Evidence supports the efficacy of emotional intelligence in bedside nurses as a method of improving key nurse and patient outcomes. Additionally, research suggests that emotional intelligence can be improved by training interventions. Clinical educators should integrate emotional intelligence concepts and strategies into staff training. Further research is recommended to validate previous findings in the NICU setting. Exploration of the relationship between emotional intelligence and moral distress in NICU nurses would provide a foundation for experimental designs to evaluate the effectiveness of emotional intelligence training interventions.
Building on the strong work of previous research agendas (2009-2012, 2012-2015, 2015-2018), the Hospice and Palliative Nurses Association Research Advisory Council developed the 2019-2022 Research Agenda in consultation with Hospice and Palliative Nurses Association (HPNA) membership and assessment of major trends in palliative nursing. The HPNA Research Advisory Council identified 5 priority areas and asked subject experts in each area to summarize the state of the science, identify critical gaps, and provide recommendations for future research. This document expands the executive summary published on the HPNA website (www.advancingexpertcare.org/hpna/) and provides supporting evidence for the 2019-2022 recommendations. The 5 priority areas are as follows: (1) pediatric hospice and palliative nursing research; (2) family caregiving; (3) interprofessional education and collaborative practice; (4) big data science, precision health, and nursing informatics; and (5) implementation science.
Infirmière à l’Institut Curie depuis plus de 25 ans, mon quotidien, mon rôle, mon travail, est de prendre soin de personnes, d’individus blessés, marqués, douloureux, déformés et meurtris par la maladie
À travers mes expériences dans les différents services, j’ai croisé de nombreux regards stressés, anxieux, désespérés, bouleversés, mais je ne suis toujours pas indifférente ni distante à toutes ses émotions, à cette détresse.
Le soignant doit garder une certaine posture et distance professionnelles et travailler en collaboration pour perdurer dans ses missions de soin et pouvoir gérer ses propres émotions.
"Je sens ma force perdue, mon corps meurtri qui était fait pour
une autre vie". Les Nuits fauves, Cyril Collard 1989.
Comment pouvoir aider ce patient meurtri et soigné au quotidien ?
Comment transmettre ce savoir être d’accompagnement du patient
Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care.
Objectives: to evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates.
Methods: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement).
Results: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09–0.43, P = 0.003), nurses (0.59; 95% CI: 0.43–0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08–0.34, P = 0.002).
Conclusions: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed.
This study developed an end-of-life (EOL) care nursing knowledge scale for Japanese geriatric nurses (ELNKS-JG) to measure nurse knowledge of EOL care for older adults. It also was used to evaluate the quality of The End-of-Life Nursing Education Consortium–Japan Geriatric. Participants were 1168 nurses employed in 32 institutions across Japan. The items of our measure were developed to cover 8 important topics: principles of EOL care for older adults; pain management; symptom management; ethics of care; cultural and spiritual considerations; communication; loss, grief, and bereavement; and caring for final days. The measure included 51 items with an overall Cronbach a coefficient of 0.87 and an intraclass correlation coefficient of 0.81. Our measure, the ELNKS-JG, was confirmed to have good internal consistency, test-retest reliability, content validity, and known-groups validity. This scale’s items included knowledge about noncancerous diseases, physical changes due to aging, family care, and multidisciplinary collaboration. The ELNKS-JG comprehensively measures a nurse’s knowledge of EOL care for older adults in any EOL setting. Furthermore, this scale can evaluate educational programs aimed at improving care quality and encouraging related activities in facilities that provide EOL care.
The removal of organs and tissues is characterized by a high level of stress and can be very traumatic for the nursing team. This study was informed by a grounded theory approach and was based on data drawn from two focus groups with 15 nurses. Main themes centered on factors that modulate the level of stress (first experiences, children donors, doubts about death, organizational factors), and coping strategies (including nurses’ attitudes toward organ donation and training needs). There is a need to implement training for the stress management of the operating nurses and to provide supportive interventions.
Nurses who care for patients with life-limiting illness operate at the interface of family caregivers (FCGs), patients, and prescribers and are uniquely positioned to guide late-life medication management, including challenging discussions about deprescribing. The study objective was to describe nurses’ perspectives about their role in hospice FCG medication management. Content analysis was used to analyze qualitative interviews with nurses from a parent study exploring views on medication management and deprescribing for advanced cancer patients. Ten home and inpatient hospice nurses, drawn from 3 hospice agencies and their referring hospital systems in New England, were asked to describe current practices of medication management and deprescribing and to evaluate a pilot tool to standardize hospice medication review. Analysis of the 10 interviews revealed that hospice nurses are receptive to a standardized approach for comprehensive medication review upon hospice transition and responded favorably to opportunities to discuss medication discontinuation with FCGs and prescribers. Effective framing for discussions included focus on reducing harmful and nonessential medications and reducing caregiver burden. Results indicate that nurses who care for hospice-eligible and enrolled patients are willing to discuss deprescribing with FCGs and prescribers when conversations are framed around medication harms and their impact on quality of life.
The curricula of undergraduate nursing programs lack education in palliative and end-of-life care. If the topic is covered, it is generally within isolated lectures and rarely as a full course. With the growing demand for nursing competence in palliative care, curricula must adapt to also place emphasis on this important topic. The release in 2016 of the American Association of College of Nursing (AACN) Palliative Competencies and Recommendations for Educating Undergraduate Nursing Students (CARES) drew attention to the need for expanded undergraduate education on this topic. This paper describes the development and delivery of an undergraduate-level online nursing elective course in palliative and end-of-life care offered through a large public university. Innovative elements of the course include practicing difficult conversations using technology to enable active student engagement in an online environment, a serious game involving individual role play for treatment decision making, and special topic weeks allowing a deeper dive into seldom discussed populations such as the homeless, which the students described as playing an important role in contributing to their learning.
BACKGROUND: The PaTz-method (acronym for Palliatieve Thuiszorg, palliative care at home) is perceived to improve coordination, continuity and communication in palliative care in the Netherlands. Although important for further implementation, research showing a clear effect of PaTz on patient-related outcomes is scarce. This study aimed to examine perceived barriers and added value of PaTz and its association with improved care outcomes.
METHODS: Ninety-eight Dutch general practitioners and 229 Dutch district nurses filled out an online questionnaire with structured questions on added value and barrier perception of PaTz-participation, and palliative care provided to their most recently deceased patient, distributed online by Dutch medical and nurses' associations. Data from PaTz-participants and non-participants was compared using Chi-square tests, independent t-tests and logistic regression analyses.
RESULTS: While both PaTz-participants and non-participants perceived PaTz to be beneficial for knowledge collaboration, coordination and continuity of care, time (or lack thereof) is considered the most important barrier for participation. PaTz-participation is associated with discussing five or more end-of-life topics with patients (OR = 3.16) and with another healthcare provider (OR = 2.55). PaTz-participation is also associated with discussing palliative sedation (OR = 3.85) and euthanasia (OR = 2.97) with another healthcare provider. Significant associations with other care outcomes were not found.
CONCLUSIONS: General practitioners and district nurses feel that participating in a PaTz-group has benefits, but perceive various barriers for participation. While participating in a PaTz-group is associated with improved communication between healthcare providers and with patients, the effect on patient outcomes remains unclear. To stimulate further implementation, future research should focus on the effect of PaTz on tangible care characteristics and how to facilitate participation and remove barriers.
OBJECTIVE: The main concern of caring for an advanced cancer patient is to fulfill the physical, psychological, social, and spiritual needs to reduce the patient's suffering for a dignified death. The purpose of palliative care is to provide comfort and appropriate palliative care nursing. The courage and dedication to fulfill the complex needs for a dying patient become a unique experience for palliative care nurses.
METHOD: Such experience was explored by using a descriptive phenomenological approach. Eight palliative care nurses were involved as the participants. The findings from the interview were analyzed by using Colaizzi method.
RESULTS: The analysis resulted six themes: palliative care given after the primary job in hospital, family's assumption of palliative care nurse as a caregiver, palliative care nurse concerned more on patient's physical needs, palliative care nurse more dominant in collaborating to overcome the pain, providing care for imminent death in accordance with predefined standards, and challenges in decision making regarding to palliative care.
CONCLUSIONS: It is suggested to improve the services to become a palliative care nurse specialist, to improve knowledge and training of palliative care nurse, and to manage the policy of palliative care nurse in National Health Service system.
The objective of this study was to explore nurses' perceptions of end-of-life care following the withdrawal of the Liverpool Care Pathway (LCP). Thirteen semi-structured interviews were conducted with nurses working in palliative care. Data were analysed using thematic analysis. Three themes emerged: perceptions of the LCP, prevailing issues, and patients' and families' experiences. This study suggested that the removal of the pathway has not remedied the issues attributed to it. Further, the way in which the LCP was removed indicates that the non-expert media can play a negative role in how palliative care is perceived, which inhibits the care process. In this respect it is important that 'insider' voices are also heard, in order to educate and also redress disinformation. Similarly, broader, persisting, contextual challenges facing staff need addressing in order to prevent a repeat of the issues leading to the removal of the LCP.
Objective: The aim of this study was to assess nurses’ Knowledge, Attitude and Associated Factors towards end of life care in Amhara Referral Hospitals, Northwest Ethiopia, 2017.
Results: A total of 331 participants were included with a response rate of 93.2%. From these, 129 (39.0%) of them had good knowledge and 234 (70.7%) had favorable attitude towards end of life care. Being Bachelor of Science holder and above in nursing (AOR = 4.261, 95% CI 1.524–11.912), working in Emergency department (AOR = 4.911, 95% CI 1.796–13.426), having daily experience of caring for chronically ill patients (AOR = 2.764, 95% CI 1.366–5.591) and taking training on end of life care (AOR = 10.269, 95% CI 4.730–22.296) were significantly associated with good knowledge of nurses towards end of life care. On the other hand, having 6–10 years of working experience in nursing (AOR = 2.199, 95% CI 1.147–4.215), being trained in end of life care (AOR = 3.027, 95% CI 1.285–7.13), Bachelor of Science holder and above in nursing (AOR = 4.414, 95% CI 2.230–8.738) were found to be statistically significant with more positive attitude of nurses towards end of life care.
OBJECTIVE: To explore the good death of terminally ill patients with cancer rated by nurses and identify associated factors in the context of Chinese culture.
METHODS: We conducted a cross-sectional, anonymous questionnaire survey. Totally, convenience samples of 122 nurses in charge of 258 patients during their dying period were investigated. The questionnaire consisted nurses' information including demographics and the experience in palliative care, patients' demographic information and disease characteristics, and Good Death Inventory (GDI).
RESULTS: Two hundred and fifty-eight (98.10%) analysable questionnaires were obtained. The total good death score was (245.40 ± 36.91), and the last three were "Independence" (7.34 ± 4.26), "Physical and psychological comfort" (8.12 ± 4.70) and "Religious and spiritual comfort" (8.44 ± 4.55); the first three were "Being respected as an individual" (18.31 ± 2.90), "Good relationship with medical staff" (18.26 ± 2.37) and "Natural death" (18.16 ± 3.22). The unit type, treatment patients received during their last 3 months and nurse's training experience in palliative care were associated factors of good death (R2 = 0.135, F = 9.160, p < .001).
CONCLUSION: The good death status of terminally ill cancer patients is poor. It's urgent to promote palliative care and strengthen the training about the knowledge and skills to improve the quality of life of the patients, so as to achieve the goal of good death.
OBJECTIVE: To provide insight into the prescribing practices of three independent nurse prescribers (INPs)/clinical nurse specialists (CNSs) working in a supportive and palliative care team (SPCT) in a district general hospital and a specialist tertiary cancer centre in the UK.
METHODS: A prospective review of all consultations and the prescribing activity arising from the consultations (and reasons for non-prescribing following a consultation) of 3 INPs/CNSs between 1 August 2018 and 31 October 2018.
RESULTS: Four hundred ninety-three consultations were undertaken on 186 individual patients. Two hundred forty-seven consultations representing 50% resulted in changes to a prescription, and 123 of those consultations representing 50% of prescriptions written resulted in the prescribing of an opioid for moderate-to-severe pain.
CONCLUSIONS: This service evaluation demonstrates the potential for INPs in SPCTs to provide comprehensive symptom control while enabling CNSs to practice with a greater degree of autonomy leading to enhanced job satisfaction. On the basis of our experience, we would encourage all palliative care CNSs to undergo training to become INPs (if available).
BACKGROUND: Resilience is important to sustain hospice nurses through a challenging career. Clinical supervision is a commonly cited support strategy, but there is limited evidence which focuses on its influence on the development of resilience in hospice nurses.
AIMS: To explore how group clinical supervision might affect the development of resilience in hospice nurses.
METHOD: A pragmatic approach and mixed methods research design was employed. Quantitative questionnaire data and qualitative focus group data were collected from community hospice nurses participating in group clinical supervision.
FINDINGS: The findings identified the importance of an effective group reflective process on the benefits to be gained from clinical supervision. Clinical supervision was found to affect the development of resilience by developing confidence at work, regulating emotions, offering a coping strategy, managing expectations, and developing self-awareness. This was dependent upon individual preference and experience, the local organisational context, and wider social and political factors.
CONCLUSION: This research contributes insight into group clinical supervision as an intervention to support resilience in hospice nurses. It offers recommendations for practice, to enhance the development of resilience through clinical supervision, and recommendations for future research.
BACKGROUND: The intensive care unit (ICU) is a care context that is sometimes described as being unconducive to the values and ideals of a good death in end-of-life care. Such assumptions render the ICU emblematic of a troubling discourse about end-of-life care in this clinical context.
AIM: To stimulate a reflective examination of intensive care nursing practice with respect to end-of-life care.
METHODS: The work of contemporary nursing scholar Laurie Gottlieb is used to perform a strengths-based relational ethical examination of previously published literature that describes critical care nurses' experiences of providing end-of-life care in the ICU.
FINDINGS: This literature suggests that the relational ethical value of authentic engagement, which is fundamental to the disciplinary ethos of expert palliative care nursing, is reflected in the everyday practice of intensive care nurses whose patients die while under their care.
CONCLUSION: A strengths-based approach can make visible the relational ethical practice of critical care nurses who care for dying patients and their families in the ICU.