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.
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.
BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood.
OBJECTIVE: To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system.
METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN's role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs.
CONCLUSIONS: Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.
There are few formal training opportunities that exist for RNs interested in the rapidly growing field of hospice and palliative care. To address this, the curriculum for a nurse residency program was developed and delivered to 12 nurses over 1 year. The nurse residents, as well as their clinical supervisors and interprofessional colleagues, were surveyed to obtain feedback on the overall program. Skill acquisition of the nurses was also assessed. The results indicate that the nurse residents had increased levels of confidence in caring for dying patients, communication with other clinicians, and delegation and management of treatment teams and families. According to supervisors and colleagues, strengths of the program included support for new nurses, integration of the interprofessional team, and solid preparation for new hospice nurses. These findings provide nursing educators and administrators with needed insight into the development and evaluation of an RN residency program in hospice and palliative care.
BACKGROUND: In cancer care, do not resuscitate (DNR) orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. Previous studies have shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care.
METHODS: A qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants.
RESULTS: The participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work.
CONCLUSION: The study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and "natural" death with dignity for their dying patients. A preference for the expression "allow for natural death" instead of the traditional term "do not resuscitate" was found in the material.
Background: People living with head and neck cancer frequently encounter challenges in their treatment with multimodality therapy and risk of side effects. Ensuring access to and use of interdisciplinary supportive and palliative care is often challenging given the complex needs and unfamiliar treatment experiences.
Objectives: Describe the CARE Clinic Plus ONN Gate Opener as an approach to enhance access to and utilization of interdisciplinary supportive and palliative care for people living with head and neck cancer.
Discussion: The Cancer Appetite and Rehabilitation (CARE) Clinic model offers interdisciplinary supportive and palliative care to patients at risk, including those living with head and neck cancer. The oncology nurse navigator (ONN) serves as gate opener, ensuring that those individuals receive appropriate assessment with personalized education and referrals for timely prehabilitation, rehabilitation, and palliation.
Conclusions: The ONN, as a gate opener for people living with head and neck cancer, offers an innovative approach to elevate the patient experience and improve clinical outcomes through interdisciplinary supportive and palliative care when working in collaboration with the CARE Clinic. Guidance for other centers to adapt our model to meet their patient and family needs concludes our discussion.
BACKGROUND: A previous study found that care provided by a nurse practitioner (NP) during oncological or palliative care was highly regarded. These patients, however, were considered a special population due to suffering from life-threatening illnesses. It remains unclear whether the results are transferable to patients with chronic conditions. Patient's perceptions of the quality of NP care have reflected that it equals or exceeds that of physicians, but the root causes of these remarks remain unclear.
PURPOSE: To describe the difference in perception of NP care by patients suffering from chronic heart failure (CHF) or inflammatory bowel disease (IBD) in contrast with NP oncological or palliative care.
METHODOLOGICAL ORIENTATION: A qualitative study from a phenomenological perspective was conducted. Data were analyzed using Colaizzi's seven-step method and the Metaphor Identification Procedure.
SAMPLE: In 2018 and 2019, 16 outpatients receiving CHF or IBD care were interviewed.
CONCLUSIONS: Although chronic and life-threatening diseases may differentiate patients' perspectives, it can be generally stated that patients value NPs to be reliable, helpful, and empathic. Patients feel empowered, at peace and in control thanks to integrated care by dedicated experts.
IMPLICATIONS FOR PRACTICE: Outpatients highly appreciate the "communicator role" and "skilled companionship" performed by NPs, to fulfill their needs for attention to the "complete picture." Therefore, further consideration of these competencies is recommended.
BACKGROUND: To date, a comprehensive, psychometrically robust instrument to assess palliative and end-of-life (PEOL) care education, practice, and perceived competence among intensive care unit (ICU) nurses does not exist.
OBJECTIVE: To examine content validity and reliability of a proposed instrument to assess the PEOL care education-practice- competence triad among ICU nurses.
METHODS: An international modified e-Delphi and a cross-sectional pilot questionnaire survey. The Delphi involved 23 panelists from 11 countries. The pilot study involved 40 staff nurses and 3 nurse managers from 3 adult ICUs in a randomly selected hospital in Egypt. An instrument was developed and judged for content validity by international panelists, and then pretested in a pilot study, where data were collected at 2 time points using self-administered questionnaires, followed by cognitive interviews. Test-retest reliability was examined using intraclass correlation (ICC), standard error of measurement (SEM), and repeatability coefficient (RC).
RESULTS: The panelists confirmed content validity of the proposed instrument, and staff nurses confirmed its comprehensibility. At the level of the instrument's total scores, the lowest ICC was .9 (95% confidence interval: .8-.9); and the highest SEM and RC were 4.8 and 13.3, respectively.
CONCLUSIONS: The PEOL Care Index is a comprehensive, comprehensible, content valid, and reliable instrument to assess the PEOL care education-practice-competence triad among ICU nurses. Construct and criterion validities need to be confirmed in future studies. Applicability of the PEOL Care Index in different settings and cultures needs to be examined.
Les infirmiers peuvent apporter une aide à la décision dans les situations d’urgence lors d’un choc septique, notamment si le malade n’a pas rédigé de directives anticipées et/ou désigné une personne de confiance. Ils peuvent entreprendre ou faciliter la collégialité des décisions nécessaires sur le plan juridique et éthique. Les habitus d’une équipe à la réflexion éthique et au recueil de données initial sont les garants du respect de la parole du patient.
OBJECTIVE: to understand the meanings attributed by nurses about conditions that interfere in defending of the elderly's autonomy on the terminality of life in the context of hospitalization.
METHOD: qualitative and exploratory study, which applied the Grounded Theory. Data were collected between November 2016 and May 2017, in the internal medicine wards of a hospital in Rio de Janeiro, Brazil, through non-participant observation and semi-structured interviews. Three sample groups composed of ten nurses, eight doctors, and 15 nursing technicians were investigated.
RESULTS: the conditions are related to the medical power, subordination of nurses, family influences; the functional decline of the elderly; and biomedical model. Final considerations: the elderly's autonomy is veiled and violated since their abilities are subjugated, and the family's will and professional paternalism may prevail. However, this right must guide contemporary care models and integrate palliative care.
Background: How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists.
Methods: Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework.
Results: Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control.
Conclusions: If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved.
BACKGROUND: Quality of care for patients dying in hospital remains suboptimal. A major problem is the identification of valid sources of information about the views and experiences of dying patients and their relatives.
AIM: This study aimed to estimate the agreement on quality of end-of-life care from the perspectives of bereaved relatives, physicians and nurses interviewed after the patients' death.
DESIGN: In this prospective study, we interviewed, after the patient death, the bereaved relatives, the attending physicians and the reference nurses, using the Toolkit After-death Family Interview and the View Of Informal Carers-Evaluation of Services (VOICES). Agreement was assessed using Lin's concordance correlation coefficient, Cohen's kappa, overall concordance correlation coefficient and Fleiss' kappa.
SETTING/PARTICIPANTS: We enrolled a consecutive series of 40 adult patients who died of cancer between January and December 2016 who had spent at least 48 hours in the medical oncology ward of the Santa Maria Hospital of Reggio Emilia, Italy.
RESULTS: We interviewed all physicians and nurses, and 26 (65.0%) out of 40 relatives. We found a poor agreement on overall quality of care among the three proxies (+0.21; -0.04 to 0.44), between relatives and nurses (+0.05; -0.39 to +0.47), and between relatives and physicians (+0.25; -0.13 to +0.57). A similar poor agreement was observed for all the other Toolkit and VOICES scales.
CONCLUSIONS: The agreement was rather poor, confirming previous results in different settings. Information from professional proxies should not be used for assessing the quality of care or for estimating missing information from bereaved relatives.
BACKGROUND: Patients receiving left ventricular assisted device (LVAD) require the expertise of specialty trained nurses referred to as VAD coordinators. The long-term use of these devices has created morally distressing situations for VAD coordinators.
OBJECTIVE: This pilot study sought to explore the association between ventricular assistance device (VAD) coordinators' unique roles and responsibilities and moral distress.
METHODS: An online survey was distributed to VAD coordinators through a listserv. The non-probability sample consisted of 36 nurses across the United States.
RESULTS: Bivariate analyses identified a number of areas of difference in respondent's levels of moral distress based on specific responsibilities associated with their role as a VAD coordinator.
CONCLUSION: These findings indicate team communication, competence, and location of VAD discontinuation may be important factors related to VAD coordinators' distress. Future research is needed with larger sample sizes and continued exploration of the impact of specialized training and curricula content.
BACKGROUND: End-of-life care is provided in a variety of healthcare settings, not just palliative care hospitals. This is one reason why it is very important to assess all barriers to end-of-life care and to provide safe and quality services to patients. This study was aimed at describing nurses' attitudes in providing end-of-life care and exploring barriers and facilitating behaviors of nurses in multi-profile hospitals in Eastern Europe.
METHODS: A descriptive, correlational design was applied in this study, using a cross-sectional survey of 1320 registered nurses within 7 hospitals in Lithuania.
RESULTS: Registered nurses working in the three different profiles emphasized safe and effective care and the importance of meeting the patient's spiritual needs at the end of life. The main barriers assigned by nurses caring for patients at the end of life were angry family members, inadequate understanding of nursing care by the patient's relatives; lack of time to talk to patients, lack of nursing knowledge to deal with the bereaved patient's family, lack of evaluation of nurses' opinions, and the evasion by physicians to talk about the diagnosis and their over-optimistic view of the situation. The main facilitating behaviors to improve nursing care were end-of-life training, volunteering, and family involvement.
CONCLUSIONS: Spiritual needs were identified by nurses as the primary needs of patients at the end of life. Family-related barriers remain one of the main barriers to end-of-life care. Also, the behavior of physicians and their relationship with nurses remains one of the most sensitive issues in end-of-life care.
BACKGROUND: End-of-life care is high on policy and political agendas in the UK and internationally. Nurses are at the forefront of this, caring for dying patients, 'managing' the dead body, and dealing with the corporeal, emotional and relational dimensions of death. Little is known about nurses' prior or early professional experiences of and reactions to death, dying and the corpse and how these might influence practice.
AIMS: To appraise the international literature on nurses' early experiences of death, dying and the dead body, to better understand how these might influence subsequent practice, and how this might inform our teaching of death, dying and last offices.
METHODS: A scoping review was undertaken of peer-reviewed publications between, 2000 and 2019, which included nurses working in hospital, care homes and the community. Medline, PubMed, PsychINFO and CINAHL databases were searched and 23 papers meeting the inclusion criteria were read. Arksey and O'Malley's (2005) five-stage approach was adopted to scope the relevant international literature, using where relevant the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Selected papers were independently reviewed and subjected to thematic analysis, leading to the generation of five overarching themes.
RESULTS: The five themes were: different philosophies of care; relationships; knowledge; impact of death; and giving care. The studies came from diverse geographical locations across different settings and were primarily qualitative in design.
CONCLUSIONS: Students and registered nurses are impacted both positively and negatively by their early encounters with death and dying. Good communication with patients, families and between professionals, understanding of what constitutes a 'good' death, and high-quality mentorship and support were of particular importance.
The coronavirus disease 2019 (COVID-19) pandemic is challenging healthcare systems worldwide, none more so than critical and intensive care settings. Significant attention has been paid to the capacity of Australian intensive care unit (ICUs) to respond to a COVID-19 surge, particularly in relation to beds, ventilators, staffing, personal protective equipment, and unparalleled increase in deaths in ICUs associated with COVID-19 seen internationally. While death is not uncommon in critical care, the international experience demonstrates that restrictions to family presence at the end of life result in significant distress for families and clinicians. As a result, the Australian College of Critical Care Nurses and the Australasian College for Infection Prevention and Control supported the development of a position statement to provide critical care nurses with specific guidance and recommendations for practice for this emerging priority area. Where possible, position statements are founded on high-quality evidence. However, the short time period since the first recognition of a cluster of pneumonia-like cases in China in January, 2020, meant that an integrative approach was required to expedite timely development of this position statement in preparation for a COVID-19 surge in Australia. This position statement is intended to provide practical guidance to critical care nurses in facilitating next-of-kin presence for patients dying from COVID-19 in the ICU.