Cet ouvrage présente une synthèse sur les soins palliatifs, à travers le cadre juridique et éthique. Des dispositions pour améliorer la pratique au quotidien sont présentées, montrant comment les soins doivent être adaptés à ces patients. Avec un descriptif des structures et des dispositifs de proximité ainsi que des exemples de méthodes d'évaluation, cette sixième édition est à jour des dernières dispositions juridiques.
L'auteur raconte les rencontres et les événements de sa vie personnelle qui ont fait naître sa vocation pour les soins palliatifs. Il propose également une réflexion teintée d'humour et de tendresse sur l'accompagnement des patients, mais aussi des proches.
Célestine, qui prétend avoir 107 ans, tient tête à la mort. Autour d'elle gravitent son fils Constantin, sa petite-fille Marion, sa dame à tout faire Madeleine et son infirmière qui tentent de rendre sa fin de vie moins difficile.
Background: Palliative sedation is used as a last-resort option to treat refractory symptoms of dying patients. Nurses are important participants in the process of sedation. However, little is known about palliative sedation from a nursing perspective.
Objectives: To analyze the practices and attitudes of nurses concerning palliative sedation.
Data sources and review methods: A scoping review guided by Arksey and O`Malley`s methodological framework was used to analyze existing peer-reviewed empirical research on the topic of the practices and attitudes of nurses related to the palliative sedation of patients aged 18 years and older. Of the 316 publications identified from the PubMed, CINAHL and Cochrane Library, 17 full-text articles were included in this review. The data of the included articles were charted (author(s), year of publication, country, objectives, study design, data collection, setting, respondents, definition of palliative sedation, focus of the study and key findings), and the results were summarized with inductive content analysis. The PRISMA-ScR checklist was used as a guideline for the reporting in this review.
Results: During the decision-making concerning the start of palliative sedation, nurses usually have an advocatory and supportive role, although the role varies between different countries. This role then changes to a relatively independent performance of sedation; including administration of the medication, monitoring the effectiveness of sedation, and in some cases taking decisions concerning the medication and dosage policy. Further, nurses provide information and compassionate care to both the patient and the family during the process of palliative sedation. Most nurses view palliative sedation as a positive and sometimes necessary last resort therapy to relieve refractory suffering of dying patients. However, sedation poses ethical problems for many nurses. These problems especially concern the essential elements of deciding to use palliative sedation, the depth of sedation, the potential for shortening life, and the loss of social interaction.
Conclusions: Nurses play a key role in palliative sedation, as they often perform sedation independently and have important information about the needs and wishes of both patients and their families due to their unique position at the bedside of the patient. Although nurses generally see palliative sedation as a positive practice for selected patients, many of them feel it is ethically controversial. This scoping review reveals a great need for further research and discussion on the practices and attitudes of nurses regarding palliative sedation.
BACKGROUND: The COVID-19 pandemic has resulted in a profound transformation of health care delivery toward telemedicine models.
PURPOSE: We present the structure of a nurse-led telephonic palliative program and operational metrics to influence further development of tele-palliative programs.
METHODS: The nurses engage with seriously ill patients for 6 months with the goal of discussing advance care planning (ACP) and addressing self-identified issues related to their illness.
FINDINGS: Of the first 100 program graduates, 78% were actively engaged and 51% named a health care agent and/or engaged in ACP. Of the 18 patients who died during the study, 13 (72%) were enrolled in hospice services.
DISCUSSION: Our preliminary results indicate that seriously ill patients are willing to engage with nurses and to participate with discussions on ACP.
CONCLUSION: Given the gaps in health care exposed by the COVID-19 pandemic, this innovative program serves as an important model for bringing palliative care directly to patients.
Registered nurses play a critical role in delivering effective palliative and end-of-life patient care. Previous literature has cited that registered nurses report a lack of adequate palliative care training in academic and continuing education programs. Providing care to patients at the end of life requires knowledge in a variety of areas such as nonpharmacologic symptom management, cultural considerations, and pain management. This study aimed to investigate the impact of a professional development intervention among registered nurses on their educational needs in providing palliative care. Using a 1-group pretest-posttest design, a convenience sample of registered nurses completed an electronic survey containing demographic questions and the End-of-Life Professional Caregiver Survey. The professional development intervention consisted of an 8-hour training conducted by a content expert on palliative patient care addressing the competencies developed by the End-of-Life Nursing Education Consortium. The results revealed a significant increase in participant knowledge in providing quality palliative care to patients (P < .001). Education programs on quality palliative and end-of-life patient care can effectively improve the care delivered to this patient population.
The COVID-19 (coronavirus disease 2019) pandemic has raised the visibility of serious health-related suffering and increased mortality worldwide, underscoring the critical need for improved access to quality palliative care in all health care delivery settings The palliative nursing role—now, more than ever—is central to alleviating symptomatic and psychosocial distress, as well as achieving patient-identified goals throughout the continuum of serious illness and bereavement care. Currently, the primary goal of many health and palliative care organizations at national and international levels is palliative care integration throughout all of health care, including timely and safe access to controlled essential medicines and primary and specialist palliative care services in acute, long-term care, and community-based settings, and dignified care at the time surrounding death. Nurses, as the largest component of the health care workforce, have a professional, ethical mandate to ensure palliative care as a human right, to improve the quality of life for patients, their families, and caregivers.
Palliative care focuses on symptom management, discussion of treatment and care decisions, network organization, and support of the family. As part of the advance care planning (ACP) process, staff nurses in the acute care setting are often involved in all of the above areas. It is yet unclear what nurses' roles and responsibilities are and what skills are needed in the ACP process. The themes that staff nurses and advanced practice registered nurses (APRNs) discuss in relationship to ACP are manifold. This scoping review demonstrates that staff nurses' core role is advocating for the wishes and values of patients with any life-limiting disease. Staff nurses also serve as facilitators, educators, and advocates to help start ACP conversations and ease patients' transitions between settings based on well-discussed decisions. To be able to engage in ACP discussions, APRNs must have excellent communication skills. Continuous training to improve these skills is mandatory. In the future, clarifying the contribution of staff nurses and APRNs in the ACP process in relation to other members of the interprofessional team can lay the groundwork for improved interprofessional collaboration.
Communication is vital to quality palliative care nursing particularly when caring for someone with a chronic life-limiting illness and their family. Conversations about future decline and preferred care are considered challenging and difficult and are often avoided, resulting in missed opportunities for improving care. To support more, earlier, better conversations, health care organizations in British Columbia, Canada, adopted the Serious Illness Care Program inclusive of the Serious Illness Conversation Guide developed by Ariadne Labs. Workshops for interprofessional team members have been held throughout the province. Nurses and allied health identified the need for more guidance in using the guide in the contexts of their clinical practice. Specifically challenging has been prognosis communication that falls within the scope of practice for each profession. Informed by workshop feedback, an expert team of nurse clinicians and educators tailored an interprofessional clinician reference guide to optimize the guide's use across health care settings. In this article, we present the adaptations focusing on (1) the role of nurses and allied health in serious illness communication, (2) prognosis communication, and (3) a range of role-play scenarios specific to nonphysician practice for serious illness conversations that may arise within the process of care.
The provision of spiritual care is referred to in professional practice guidelines and mandated in nurses' ethical codes. Still, a gap exists regarding essential training in spiritual conversation and assessment, leaving some health care providers feeling uncomfortable when assessing spiritual support needs. The purpose of this study was to assess hospice and palliative nurses' and holistic nurses' perceptions of spirituality and spiritual care. It was assumed that the standards of care for hospice and palliative nurses and holistic nurses stipulate that spiritualty is addressed within the framework of their specialties and provide education for spiritual care, thus making these nurses proficient in providing spiritual care. This exploratory, descriptive study utilized a web-based survey to measure perception of spirituality and spiritual care giving using a modified Spirituality and Spiritual Care Rating Scale. A convenience sample was recruited from members of the Hospice and Palliative Nurses Association and the American Holistic Nurses Association (n = 250). Descriptive statistics summarized data as well as qualitative analysis of written narratives. Content analysis of open-ended survey questions was used to identify themes until saturation. This study found that given adequate resources and education, nurses can be positioned to address the spiritual needs of patients and provide appropriate care. This study adds to an emerging body of evidence suggesting that training in spiritual care should be an important component of the foundational nursing curriculum.
The objective of this study was to investigate the factors affecting the quality of dying and death among terminally ill patients in an intensive care unit in Korea using a cross-sectional, online survey. A total of 300 nurses in the intensive care unit who had cared for a terminally ill patient for at least 48 h prior to death in the past six months were chosen to participate. The person-centered critical care nursing (PCCN) score and quality of dying and death (QODD) had a positive correlation. The QODD score increased when the consultation was conducted between the terminally ill patients and their doctors when CPR was not performed within 48 h of death, and when the PCCN score increased. The quality of death of patients is affected by whether they have sufficiently consulted with healthcare providers regarding their death and how much respect they receive. It is important for nurses to practice and improve patient-centered nursing care in order to ensure a good quality of death for terminally ill patients.
PURPOSE: Little is known regarding how advance care planning (ACP) interventions change with the progression of dementia. Thus, the primary purpose of this systematic review is to compare characteristics of ACP interventions across dementia stages. We also identify the role of nurses in implementing ACP interventions for persons with dementia and their surrogates.
DESIGN: A systematic review of ACP intervention studies.
METHODS: After searching PubMed, Web of Science, EMBASE, PsycArticles, the Cumulative Index to Nursing and Allied Health Literture (CINAHL), and Scopus, the final sample included 11 studies representing 10 interventions. We conducted a quality assessment and extracted data on dementia stage, intervention characteristics, and the role of nurses in the intervention. The extracted data were categorized according to stages of dementia, and analyzed to identify commonalities and differences between intervention characteristics.
FINDINGS: Three ACP interventions focused on mild dementia and seven on advanced dementia. We observed four primary findings. First, we found a major difference in intervention recipients between the two dementia stages. Second, most ACP interventions included structured discussions regarding the person's life goals and values, goals of care, and preferences concerning future care via individual, face-to-face interactions. Third, ACP interventions designed to promote ongoing discussions and documentation were lacking. Finally, nurses played important roles in implementing ACP interventions.
CONCLUSIONS: The findings suggest more nurse-led, dementia-related ACP interventions. In addition, ACP interventions should promote ongoing discussions and documentation and target persons with dementia and their surrogates in various countries.
CLINICAL RELEVANCE: Many persons with dementia and their surrogates have limited knowledge about ACP; thus, more nurse-led ACP programs that reflect dementia stages may help them prepare for the situations in which persons with dementia lack decision-making capacity.
Objectives: To explore the legal understanding and attitudes of nurses and physicians in both acute and chronic geriatric care (Flanders, Belgium) regarding euthanasia in the context of tiredness of life in older people.
Method: Healthcare providers employed in acute care (59 geriatricians and 75 nurses of acute geriatric wards), as well as chronic care (135 general practitioners (GPs) and 76 nurses employed in nursing homes and home care services) were sent a survey with four case vignettes. For each case vignette, respondents were asked the following questions: (1) ‘Does this case fit the due-care criteria of the euthanasia law?’, (2) ‘Do you consider this person to be tired of life?’, (3) ‘Can you comprehend this person’s euthanasia request?’.
Results: In cases of severe and life-limiting physical suffering, where the patient meets the legal criteria for euthanasia in Belgium, only 50% of physicians and nurses are aware of this legal basis. In case of tiredness of life without underlying pathology, nurses showed more comprehension for the euthanasia request compared to physicians (43.0% vs. 10.8%, p < 0.001). Physicians tend to assess the legal base of an euthanasia-request depending on the severity of physical morbidity, whereas nurses show a greater comprehension towards euthanasia-requests even in absence of severe illness. Geriatricians are more reserved regarding performing euthanasia themselves as compared to GPs, regardless of underlying pathology or reason for the euthanasia-request (p < 0.001).
Conclusion: The legal understanding and attitude of Flemish physicians and nurses towards tiredness of life and euthanasia in older patients differed to a great extent. This study showed (1) a lack of awareness of the legal basis for euthanasia in the context of ToL among all HCPs, (2) differences in the extent of comprehension between nurses and physicians and (3) differences in willingness to actually perform euthanasia between geriatricians and GPs. So even with the formulation of strict due-care criteria there is still room for interpretation. This creates a gray area and a discussion point between healthcare providers.
BACKGROUND: This study aimed to evaluate the differences in nurses' willingness to discuss palliative care with terminally ill patients and their family members.
METHODS: The participants were randomly recruited from registered staff nurses aged = 20 years who were responsible for clinical inpatient care in a tertiary hospital in northern Taiwan. A semi-structured questionnaire was administered to evaluate nurses' experiences of discussing do-not-resuscitate (DNR) decisions and their willingness to discuss palliative care with terminal patients and their family members. The differences in nurses' experiences regarding DNR and willingness to discuss palliative care with terminally ill patients and their family members were compared using the Chi-square test. Logistic regressions were used to analyze factors associated with nurses' willingness to discuss palliative care with patients and their families.
RESULTS: More participants had experienced initiating discussions about DNR with patients' families than with patients (72.2% vs. 61.9%, p < 0.001). Unadjusted logistic regression analysis showed that the experiences of actively initiating DNR discussions with patients were a significant factor associated with palliative care discussion with patients (OR = 2.91, 95% CI: 1.09~7.79). On the other hand, the experiences of actively initiating DNR discussions with patients and with patients' families were significant factors associated with palliative care discussion with patients' families (OR = 3.84, 95% CI: 1.22~12.06 and OR = 3.60, 95% CI: 1.19~10.90, respectively). After adjusting for covariates, no significant factors were found to be independently associated with nurses' willingness to discuss palliative care with patients and their family members.
CONCLUSION: There are significant differences in nurses' willingness to discuss palliative care with patients and their family members. Further research is needed to evaluate factors associated with nurses' willingness to discuss palliative care with patients and their families to facilitate these discussions and protect patients' autonomy.
AIMS AND OBJECTIVES: To understand hospice palliative care nurses' (HPCNs) perceptions toward spiritual care and their competence to provide spiritual care.
BACKGROUND: Previous research has shown that many nurses lack a clear understanding of the concept of spirituality and feel inadequately prepared to assess patients' spiritual needs. Studies on competence in spiritual care are mostly descriptive, and the evidence for improving it is limited.
DESIGN: A mixed methods research design was used.
METHODS: Quantitative data were collected from 282 nurses in forty Hospice Palliative Care (HPC) institutions in South Korea and analyzed using descriptive statistics, independent t-test, one-way ANOVA with Bonferroni test, and multiple regression. Qualitative data collection involved two stages: first, an open-ended question posed to 282 nurses, and second, focus group interviews conducted with six HPC experts. Both qualitative datasets were analyzed separately using content analysis. This study followed the GRAMMS guidelines.
RESULTS: Of the six dimensions of spiritual care competence (SCC), the mean scores were highest in "attitude toward the patient's spirituality" and "communication," whereas the "assessment and implementation of spiritual care" and "professionalization and improving the quality of spiritual care" had the lowest mean scores. Through content analysis, 4 themes regarding the meaning of spiritual care, 3 themes regarding requirements for spiritual care, and 2 themes regarding preparedness for spiritual care were revealed. They perceived the needs of the understanding of spiritual care based on the attributes of spirituality, the education in systematic assessments and implementation for spiritual care with standardized terminology, and the opportunity to reflect on nurses' own spirituality.
CONCLUSIONS: Practical SCC training for HPCNs and the subsequent development of clinical practice guidelines are of vital importance.
RELEVANCE TO CLINICAL PRACTICE: The results of this study provide a useful resource to develop educational programs for strengthening the SCC of nurses and the entire HPC team.
Oncology nurses are primary providers of care to persons with cancer (PWC) and play a crucial role in providing palliative care (PC) to this population. However, little is known about the educational needs of oncology nurses when providing PC to PWC. The purpose of this study was to qualitatively investigate oncology nurses' educational needs in providing the eight domains of PC listed in the National Consensus Project for Quality Palliative Care (NCP) guidelines to PWC. A nationally representative sample of oncology nurses who are members of the Oncology Nursing Society responded to two open-ended questions. Results showed the majority of the 303 respondents defined the term "PC" as primarily being symptom management. Oncology nurses (n = 246) expressed educational needs in all eight domains of PC. These nurses need additional education in the provision of PC in order to deliver holistic, person-centered care to PWC.
In 2016, the Supreme Court of Canada legalized medical assistance in dying in Canada. Similar to jurisdictions where this has been a more long-standing option for end-of-life care, the Supreme Court's decision in Canada included a caveat that no healthcare provider could be compelled to participate in medical assistance in dying. The Canadian Nurses Association, in alignment with numerous ethical guidelines for healthcare providers around the globe, maintains that nurses may opt out of participation in medical assistance in dying if they conscientiously object to this procedure. The realities of implementing medical assistance in dying are still unfolding. One area that has received little attention in the literature thus far is the ability of nurses who aid with, rather than administer, medical assistance in dying to conscientiously object. This is particularly significant in rural and remote areas of Canada where geographic dispersion and limited numbers of nursing staff create conditions that limit the ability to transfer care or call on a designated team. Exercising conscientious objection to medical assistance in dying in rural and remote areas, by way of policies developed with an urban focus, is one example of how the needs of rural nurses and patients may not be met, leading to issues of patient access to medical assistance in dying and retention of nursing staff. To illustrate the complexities of nurses' conscientious objection to medical assistance in dying in a rural setting, we apply an ethical decision-making framework to a hypothetical case scenario and discuss the potential consequences and implications for future policy. Realizing that conscientious objection may not be a viable option in a rural or remote context has implications for not only medical assistance in dying, but other ethically sensitive healthcare services as well. These considerations have implications for policy in other jurisdictions allowing or considering medically assisted deaths, as well as other rural and remote areas where nurses may face ethical dilemmas.
BACKGROUND: Confusion about what a do-not-resuscitate (DNR) order means, including its misinterpretation as "do not treat," has been extensively documented in the literature. Yet there is a paucity of research concerning nurses' perspectives on DNR orders.
PURPOSE AND DESIGN: This mixed-methods study was designed to explore nurses' perspectives on the meaning and interpretation of DNR orders in relation to caring for hospitalized adults with such orders.
METHODS: Direct care nurses on three units in a large urban hospital were asked to respond online to a case study by indicating how they would prioritize care based on the patient's DNR designation. These nurses were then invited to participate in open-ended interviews with a nurse researcher. Interviews were audiotaped, transcribed, and analyzed.
FINDINGS: A total of 35 nurses responded to the case study survey. The majority chose to prioritize palliative care, despite no indication that any plan of care was in place. Thirteen nurses also completed a one-on-one interview. Analysis of interview data revealed this overarching theme: varying interpretations of DNR orders among nurses were common, resulting in unintended consequences. Participants also reported perceived variances among health care team members, patients, and family members. Such misinterpretations resulted in shifts in care, varying responses to deteriorating status, tension, and differences in role expectations for health care team members.
CONCLUSIONS: Nurses have opportunities to address misconceptions about care for patients with DNR orders through practice, education, advocacy and policy, and research.
PURPOSE: This study aimed to determine the palliative care difficulties experienced by nursing students during their clinical practice.
DESIGN AND METHODS: This descriptive and cross-sectional study was conducted with 305 nursing students at a university in Turkey. Data were collected using a student identification form and the palliative care difficulties scale.
FINDINGS: Nursing students experience a moderate level of difficulty in providing care for palliative care patients and receiving expert support facilitates their care initiatives.
PRACTICE IMPLICATIONS: It is important to support nursing students during their nursing education courses and clinical training, along with psychiatric nursing skills.