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.
Les infirmières prennent soin des patients au quotidien mais aussi lorsque la mort survient. Elles réalisent alors une toilette mortuaire qui marque la fin de la prise en charge et témoigne du respect de l'équipe soignante envers la personne défunte. Au-delà des aspects techniques, chaque infirmière se confronte à sa propre part d'humanité dans la réalisation de ce soin. La crise sanitaire liée à la Covid-19 a soumis les équipes à rude épreuve sur ce point.
PURPOSE: Neonatal palliative care becomes an option for critically ill neonates when death is inevitable. Assessing nurses' attitudes towards, barriers to, and facilitators of neonatal palliative care is essential to delivering effective nursing care.
METHODS: This study was conducted from January to September 2015 and involved Italian nurses employed in Level III neonatal intensive care units in 14 hospitals in northern, central, and southern Italy. A modified version of the Neonatal Palliative Care Attitudes Scale (NiPCAS) was adopted to assess nurses' attitudes.
FINDINGS: A total of 347 neonatal nurses filled out the questionnaire. The majority were female (87.6%), with a mean age of 40.38 (±8.3) years. The mean score in the "organization" factor was 2.71 (±0.96). The "resources" factor had a mean score of 2.44 (±1.00), while the "clinician" factor had a mean score of 3.36 (±0.90), indicating the main barriers to and facilitators of implementing palliative nursing care.
CONCLUSIONS: Italian neonatal nurses may face different obstacles to delivering neonatal palliative care and to improve their attitudes in this field. In the Italian context, no facilitators of, only barriers to, palliative care delivery were identified.
CLINICAL RELEVANCE: Nurses' attitudes towards neonatal palliative care are essential to supporting nurses, who are constantly exposed to the emotional and moral distress connected with this field of end-of-life nursing care.
This study aimed to investigate actual situations of nursing activities in supporting the transition to homecare settings for end-stage cancer patients and to determine factors related to executing such nursing activities from the perspectives of communication skills and interprofessional collaboration. A cross-sectional study was conducted with 513 nurses who worked at designated cancer care hospitals in Japan. A total of 318 valid responses were obtained (valid response rate: 62.0%). Scores for nursing activities were higher for the following items: sharing information regarding the transition to homecare settings, intentionally engaging with patients after their medical conditions were explained, providing care for families, and understanding a patient's will about the transition to homecare settings. On the other hand, scores were lower for items that were related to guiding juniors and self-improvement. A multiple regression analysis was performed with nursing activities as the dependent variable. 8 factors related to nursing activities were determined: experience in supporting the transition to homecare settings as a primary nurse, contribution to a team (Team Approach Assessment Scale [TAAS]), years of nursing experience, function of a team (TAAS), regulation of interpersonal relationship (ENDCOREs communication skills scale), experience of participation in homecare nursing education or seminars, verbal communication skills for good communication (End-of-life Care Nurses’ Communication Skills scale), and educational background. Future challenges include developing an educational program based on the results of the present study and promoting educational intervention studies.
Adequate interprofessional collaboration is essential to provide high quality palliative dementia care across different settings. Within interprofessional collaboration, nurses are the frontline healthcare professionals (HCPs), who interact closely with people with dementia, their loved ones, and other HCPs. A survey was conducted to explore the needs of nurses regarding interprofessional collaboration in home care (HC) organisations, nursing homes (NHs) and during NH admissions. The survey identified the perceived quality of and preferred needs regarding interprofessional collaboration. In total, 384 participants (53.9% home care nurses) completed the survey. The most frequently reported collaboration needs in HC organisations and NH were optimal communication content e.g. information transfer and short communication lines (being able to easily contact other disciplines), and coordination e.g. one contact person, and clear task division and responsibilities). During NH admissions, it was important to create transparency about agreements concerning end-of-life wishes, optimize nurse-to-nurse handover during NH admissions (through performing visits prior to admissions, and receiving practical information on how to guide relatives), and improve coordination (e.g. one contact person). In conclusion, the key collaboration needs were organising central coordination, establishing optimal communication, and creating transparency on end-of-life care agreements.
This study aimed to determine the relationship between death and DNR attitudes among ICNs. This descriptive-analytical study was performed on 156 ICNs in 2018. All nurses were enrolled in the study; data collection instruments included Death Attitude Profile-Revised (DAP-R) and the DNR attitude questionnaires. The mean scores of DAP-R and DNR items were 150.89/ ± 23.59 and 91.82 ± 11.41, respectively. There was a significant relationship between death attitude and DNR attitude Famong ICNs. All dimensions of DAP-R significantly predicted attitude toward DNR (P < 0.05). Among those, “neutral acceptance” (1.17 [95% CI (0.68--1.65)] was the strongest predictor and “death avoidance” was the weakest predictor (0.36 [95% CI (0.09--0.62)]. There was a significant relationship between the ICNs' work experience and attitude toward DNR (p = 0.03). The findings can be used in formulation of the national guideline for DNR order.
INTRODUCTION: End-of-life care (EOLC) is necessary for patients who are not expected to live long. Nurses have positive attitudes toward EOLC, but they encounter difficulties in practice. That situation creates conflict, which can affect burnout. It is essential to manage nurses' conflict about their ability to practice EOLC by enhancing their individual strengths. Focusing on the role of self-compassion may help to prevent burnout related to the conflict about ability to practice EOLC.
OBJECTIVE: The study aim was to assess the mediating effect of self-compassion on the association between conflict about ability to practice EOLC and burnout.
METHODS: A correlational study was conducted with emergency department nurses who practiced EOLC. Self-report measures of conflict about ability to practice EOLC, burnout, and self-compassion were obtained.
RESULTS: Negative aspects of self-compassion mediated the relationship among conflict, emotional exhaustion, and depersonalization (burnout). Self-compassion did not mediate the association between conflict and reduced personal accomplishment (burnout).
CONCLUSIONS: Negative aspects of self-compassion mediated the relationship between conflict and burnout (excluding reduced personal accomplishment). To prevent burnout, it is necessary to screen for nurses with low self-compassion and to provide opportunities to change their cognitive recognition and disclose their conflicts.
BACKGROUND: Nurses are the largest regulated group of healthcare professionals involved in palliative care. In 2004, a taskforce of the European Association for Palliative Care (EAPC) launched the 'Guide for development of palliative nurse education in Europe' (hereinafter, the EAPC 2004 Guide). No systematic evaluation of its impact in the development of palliative care education was undertaken.
AIMS: To describe current undergraduate and postgraduate nursing education across Europe; to identify the roles that nurses with different palliative care educational levels have in palliative care; and to assess the uptake of the EAPC 2004 Guide in the development of palliative care nursing in Europe.
DESIGN: Descriptive research involving an online survey among nursing experts, and the consultation of national representatives.
SETTING/PARTICIPANTS: A total of 135 nurses (52% response rate) from 25 countries completed the online survey; representatives from 16 countries were consulted.
RESULTS: In 14 (56%) countries, palliative care was not identified as a mandatory subject within undergraduate nursing education. The EAPC 2004 Guide is widely known and was/is being used in many countries to promote palliative care nursing education. Large variations were found across and within country responses.
CONCLUSIONS: Palliative care nursing education varies largely in Europe. The wide awareness and use of the EAPC 2004 Guide show how policy measures can influence the development of palliative care education. Recommendations are built and focus on both fostering the use of this guide and implementing policy measures to ensure that palliative care nursing is recognised and certified as a specialty in all European countries.
Clinical nurses are in a crucial position to provide primary palliative care by advocating for patients and families at the end of life, collaborating with the health care team to optimize quality of life, and contributing to enhanced symptom management. Most clinical nurses, however, have not received the comprehensive palliative care education needed to provide high-quality palliative care. The End-of-Life Nursing Education Consortium curriculum can bridge this gap by providing nurses with the knowledge needed to promote palliative care. Following completion of an End-of-Life Education Consortium train-the-trainer program, 6 nurses from a large, metropolitan academic medical center designed and implemented a series of 20-minute educational sessions informed by a hospital-wide needs assessment and based on the End-of-Life Nursing Education Consortium curriculum. The educational sessions, Palliative Care Conversations, provide clinical nurses with the core palliative care knowledge and skills needed to advocate for and provide patient-/family-centered care throughout the serious illness trajectory and at end of life. This article describes the process, design, and content of the palliative care educational sessions.
Effective communication is the foundation of quality care in palliative nursing. As frontline palliative home care providers, nurses could foster more effective bereavement coping skills through therapeutic conversations. The purpose of this study was to evaluate the impact of a nursing intervention offered to bereaved family cancer caregivers. This was a quasi-experimental design, with a posttest-only comparison of the intervention and control groups receiving usual care. Bereaved caregivers (n = 51) receiving services from a specialized palliative home care unit participated and completed measures of depression, anxiety, stress, and grief reactions 3, 5, and 6 months after their close relative had died.
There was a significant decrease in anxiety symptoms in the intervention group compared with the control group across all 3 time points. Anxiety and stress symptoms also decreased over time in the 2 groups combined, but this decrease was not observed for depression. When evaluating grief reactions, the intervention group had a lower mean of controlled grief responses, across the posttest period, than the control group.
Results demonstrate that providing bereaved family caregivers the opportunity to participate in a therapeutic conversation intervention might reduce distressing symptoms in early bereavement.
The current global incidence of cancers makes palliative care important. This study described knowledge of palliative care and its demographic predictors among professional nurses in south-east Nigeria. The study took place in five workshop venues for the Mandatory-Continuing-Professional-Development-Programme (MCPDP) for professional nurses in south-east of Nigeria. The study was conducted from January-December of 2018. A cross-sectional design was utilized. A sample of 415 professional nurses was examined. Multi-stage sampling was used to select respondents. Adapted Palliative-Care-Quiz-for-Nursing (PCQN) was used for data collection. Descriptive and inferential statistics was used for data analysis at P < 0.05. Results revealed that the respondents had inadequate knowledge of palliative care especially on pain management (34.96%). There was significant association between age of respondents and knowledge of palliative care (effect size 27.7%). Respondents aged 40–49 years had better knowledge of palliative care (P = 0.001). There was significant association between educational qualification of respondents and knowledge of palliative care (effect size 20.9%). Respondents with bachelors degree had better knowledge of palliative care than diploma holders (P = 0.001). Type of hospital of practice was significantly associated with knowledge of palliative care about 21.7% of the times. Respondents who practice in public hospitals were more likely to have adequate knowledge of palliative care (P = 0.001). Years of nursing experience was not associated with knowledge of palliative care. Nurses have inadequate knowledge on palliative care especially pain management, which would make them unable to render palliative care to patients. Continuing education on palliative care with emphasis on pain management might remedy this situation.
This study aimed to elucidate the predictors and the effects of path modeling on the knowledge, attitude, and practice toward do-not-resuscitate (DNR) among the Taiwanese nursing staff. This study was a cross-sectional, descriptive design using stratified cluster sampling. We collected data on demographics, knowledge, attitude, and practice as measured by the DNR inventory (KAP-DNR), Mindful Attention Awareness Scale, General Self-Efficacy Scale, and Dispositional Resilience Scale. Participants were 194 nursing staff from a medical center in northern Taiwan in 2019. The results showed that participation in DNR signature and education related to palliative care were significant positive predictors of knowledge toward DNR. The DNR predictors toward attitude included DNR knowledge, mindfulness, self-efficacy, dispositional resilience, and religious belief of nurses. Generally, the critical predictors of DNR practice were DNR attitude, dispositional resilience, and male nurses. In path modeling, we identified that self-efficacy, dispositional resilience, master's degree, and religious belief directly influenced practice constituting DNR. Based on the findings of this study, we propose that nurses should improve their self-efficacy and dispositional resilience through training programs. Encouraging staff to undertake further education and have religious beliefs can enhance the practice of DNR and provide better end-of-life care.
AIM: To examine whether nurses' location of employment, demographics, or training influences their perceptions of what constitutes optimal care for dying patients in hospital.
DESIGN: Questionnaire-based, cross-sectional study.
METHODS: Between December 2016-June 2018, 582 registered or enrolled nurses from Australia (N = 153), South Korea (N = 241), and Hong Kong (N = 188) employed in a variety of hospital care units rated the extent to which they agreed with 29 indicators of optimal end-of-life care across four domains: patient, family, healthcare team, and healthcare system. Latent class analysis identified classes of respondents with similar responses.
RESULTS: Top five indicators rated by participants included: 'physical symptoms managed well'; 'private rooms and unlimited visiting hours'; 'spend as much time with the patient as families wish'; 'end-of-life care documents stored well and easily accessed' and 'families know and follow patient's wishes'. Four latent classes were generated: 'Whole system/holistic' (Class 1); 'Patient/provider-dominated' (Class 2); 'Family-dominated' (Class 3) and 'System-dominated' (Class 4). Class 1 had the highest proportion of nurses responding positively for all indicators. Location was an important correlate of perceptions, even after controlling for individual characteristics.
CONCLUSION: Nurses' perceptions of optimal end-of-life care are associated with location, but perhaps not in the direction that stereotypes would suggest. Findings highlight the importance of developing and implementing location-specific approaches to optimize end-of-life care in hospitals.
IMPACT: The findings may be useful to guide education and policy initiatives in Asian and Western countries that stress that end-of-life care is more than symptom management. Indicators can be used to collect data that help quantify differences between optimal care and the care actually being delivered, thereby determining where improvements might be made.
In 2017, Victoria became the first state in Australia to pass legislation permitting voluntary assisted dying. Under this law, only those people who are near the end of their lives may access voluntary assisted dying, and because many of these people require nursing care to manage the progression of their illness or their symptoms, it will invariably have an impact on nursing practice. The Victorian law includes a series of procedural steps as safeguards to ensure that the law operates as intended. To support people who choose voluntary assisted dying and to practice safely within boundaries of the law, nurses must be aware of these requirements and how they operate. However, there are often gaps in nurses' legal knowledge. This was demonstrated in an article that aimed to inform nurses about the operation of Voluntary Assisted Dying Act 2017 (Vic) but contained several errors and misstatements of the law. Our article corrects these errors and discusses how the law is intended to be applied by revisiting the fictional case of Chloe - a woman with a terminal illness who is seeking voluntary assisted dying. As the Voluntary Assisted Dying Act 2017 (Vic) also protects nurses from liability if they act in accordance with its provisions, we conclude that sound knowledge and understanding of its operation support nurses to provide the safe, comprehensive and compassionate care their patients deserve at the end of life.
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient.
METHODOLOGY: an observational, descriptive and cross-sectional study, carried out from January to June 2018 with nurses from the palliative care area, intensive care unit, neonatology and oncohaematology area of a tertiary paediatric hospital in Barcelona city. An ad hoc questionnaire was applied, divided into three parts: socio-demographic data, the Bugen scale of coping with death and two open questions.
RESULTS: 31.37% of the respondents faced the process of death of the paediatric patient adequately, while 33.33% did not cope well. The best coping was in paediatric palliative care, followed by paediatric oncohaematology, neonatology and, finally, the intensive care unit. In addition, the variables related to this coping are the work shift, the death of a loved one in less than 3 years and previous training. On the other hand, the age of the respondents, experience in the unit and having children are not related to coping. Moreover, the professionals surveyed demand more training to improve their coping in this area, as well as interdisciplinary sessions to discuss cases of deceased patients.
BACKGROUND: The coronavirus disease 2019 pandemic has led to escalating infection rates and associated deaths worldwide. Amid this public health emergency, the urgent need for palliative care integration throughout critical care settings has never been more crucial.
OBJECTIVE: To promote palliative care engagement in critical care; share palliative care resources to support critical care nurses in alleviating suffering during the coronavirus disease 2019 pandemic; and make recommendations to strengthen nursing capacity to deliver high-quality, person-centered critical care. Methods Palliative and critical care literature and practice guidelines were reviewed, synthesized, and translated into recommendations for critical care nursing practice.
RESULTS: Nurses are ideally positioned to drive full integration of palliative care into the critical care delivery for all patients, including those with coronavirus disease 2019, given their relationship-based approach to care, as well as their leadership and advocacy roles. Recommendations include the promotion of healthy work environments and prioritizing nurse self-care in alignment with critical care nursing standards.
CONCLUSIONS: Nurses should focus on a strategic integration of palliative care, critical care, and ethically based care during times of normalcy and of crisis. Primary palliative care should be provided for each patient and family, and specialist services sought, as appropriate. Nurse educators are encouraged to use these recommendations and resources in their curricula and training. Palliative care is critical care. Critical care nurses are the frontline responders capable of translating this holistic, person-centered approach into pragmatic services and relationships throughout the critical care continuum.
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.
AIMS AND OBJECTIVES: To describes nurses' moral experiences with Medical Assistance in Dying in the Canadian context.
BACKGROUND: Nurses perform important roles in Medical Assistance in Dying in Canada and do so within a unique context in which Medical Assistance in Dying is provided through healthcare services and where accessibility is an important principle. International literature indicates that participating in Medical Assistance in Dying can be deeply impactful for nurses and requires a high degree of moral sense-making.
DESIGN: A qualitative interview study guided by Interpretive Description using the COREQ checklist.
RESULTS: Fifty-nine nurses from across Canada participated in the study. The decision to participate in Medical Assistance in Dying was influenced by family and community, professional experience and nurses' proximity to the act of Medical Assistance in Dying. Nurses described a range of deep and sometimes conflicting emotional reactions provoked by Medical Assistance in Dying. Nurses used a number of moral waypoints to make sense of their decision including patient choice, control and certainty; an understanding that it was not about the nurse; a commitment to staying with patients through suffering; consideration of moral consistency; issues related to the afterlife; and the peace and gratitude demonstrated by patients and families.
DISCUSSION: The depth of nurses' intuitional moral responses and their need to make sense of these responses are consistent with Haidt's theory of moral experience in which individuals use reasoning primarily to explain their moral intuition and in which moral change occurs primarily through compassionate social interaction. Further, work on the moral identity of nursing provides robust explanation of how nurses' moral decisions are contextually and relationally mediated and how they seek to guard patient vulnerability, even at their own emotional cost.
CONCLUSION: Medical Assistance in Dying is impactful for nurses, and for some, it requires intensive and ongoing moral sense-making.
RELEVANCE TO CLINICAL PRACTICE: There is a need to provide support for nurses' moral deliberation and emotional well-being in the context of Medical Assistance in Dying care.
Background: Nearly 3 million U.S. family caregivers support someone with cancer. However, oncology clinic-based service lines that proactively screen, assess, and support cancer caregivers are nearly nonexistent.
Objective: To examine first-year experiences of a nurse-led clinic-based telehealth support service (FamilyStrong) for family caregivers of patients with recently diagnosed grade IV brain tumors.
Methods: This is a retrospective evaluation of operational outcomes from initial implementation of the FamilyStrong Service, developed in partnership with Caregiver and Bereavement Support Services at the University of Alabama at Birmingham (UAB) and the UAB Center for Palliative and Supportive Care. From August 2018 to December 2019, 53 family caregivers were proactively identified and enrolled by a palliative care nurse, working approximately one day/week, who performed monthly caregiver distress thermometer screenings by phone and provided emotional, educational, problem-solving, and referral support.
Results: Enrolled family caregivers were a mean age of 53.5 years and mostly female (62.3%), full- or part-time employed (67.9%), and the patient's spouse/partner (79.3%). Caregivers provided support 6.7 days/week for 11.2 hours/day. The palliative care nurse performed 235 distress screenings and provided support that included 68 documented instances of emotional, problem-solving, and educational support, 41 nurse-facilitated communications with the neuro-oncology team about patient issues, and 24 referrals to UAB and community services (e.g., counseling). The most common problems caregivers wanted assistance with included: managing their relative's health condition and symptoms (51%), coordinating care/services (21%), and planning for the future/advance care planning (17%).
Discussion: The FamilyStrong Program is among the first "real world" oncology clinic-based formal support services for advance cancer family caregivers.