BACKGROUND: The context of care provided in long-term care homes is changing, as an increasing number of older adults are entering long-term care with advance stages of illness and higher care needs. Long-term care homes are quickly becoming the place of death for an increasing number of older adults, despite recent literature identifying inadequate and suboptimal levels of end-of-life care. Within long-term care, healthcare assistants represent 60%-70% of the unregulated workforce and provide 70%-90% of the direct care to residents. Research indicates that a high level of uncertainty exists surrounding the role of healthcare assistants in end-of-life care, with numerous studies reporting the role of healthcare assistants to be 'unclear' with varying levels of responsibilities and autonomy.
OBJECTIVE: The purpose of this scoping review was to explore healthcare assistants' experiences and perspectives of their role in end-of-life care in long-term care.
METHODS: We applied Arksey and O'Malley's methodological framework, with recommendations from Levac and colleagues' guiding principles. Electronic databases and the grey literature were searched for relevant articles. Search concepts included end-of-life care and healthcare assistants. Articles were included in this review if they explored healthcare assistants' experiences or perspectives of providing end-of-life care in long-term care. The peaceful end of life theory by Ruland and Moore (1998) was used to organise data extraction and analysis.
RESULTS: A total of n = 15 articles met the inclusion criteria. The most predominant role-required behaviours reported by healthcare assistants were as follows: psychosocial support to significant others, knows the resident's care wishes and physical care with respect and dignity. The most predominant extra-role behaviours reported by healthcare assistants were as follows: becoming emotionally involved, acting as extended family and ensuring residents do not die alone.
CONCLUSIONS: Findings from this review expanded the concept of end-of-life care by illustrating the role-required and extra-role behaviours healthcare assistants perform when providing end-of-life care in long-term care.
IMPLICATIONS FOR PRACTICE: Findings from this scoping review highlight the numerous behaviours healthcare assistants perform outside their role description in order to provide end-of-life care to dying residents in long-term care. These findings could inform policymakers and managers of long-term care homes.
PURPOSE: Defining patients as 'terminally-ill' may be difficult. Therefore, determining when to shift the goal of care from curative to comfort care may be extremely challenging. The aim of this study was to merge when and how Registered Nurses (RNs) and Nurses' Assistants (NAs) adjust end-of-life care to pursue patient comfort at the end of their lives.
METHODS: A descriptive qualitative study based on multiple focus groups was performed in 2017 according to the COnsolidated criteria for REporting Qualitative research guidelines. In all, 25 RNs and 16 NAs across seven north-east Italian facilities that provide end-of-life care, voluntarily participated in the study. Each focus group was conducted following the same interview guide with open-ended questions, and was audiotaped. A thematic analysis was applied to interview transcripts.
RESULTS: The process of nursing care plan adjustment is based upon two main themes, around 'when' and 'how' to adjust it. Regarding when, 'Detecting the turning point', and 'Being ready to change continuously until the end' emerged as the main sub-themes. Regarding how, 'Weighing harms and benefits of nursing care interventions'; 'Advocating for patients' wishes', 'Sharing the adjustments inside the team at different levels', 'Involving family in the adjustments of nursing care'; and 'Allowing care to move away from evidence-based practice' were the sub-themes emerged.
CONCLUSIONS: Shedding light on the implicit decisional processes that inform care adjustments and the implementation of related strategies is essential to improve the quality of end-of-life care given that an early detection of the terminal phase has been reported to result in changes of care improving outcomes.
Background: Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution.
Aim: The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care.
Design: Scoping review
Data sources: Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement.
Results: The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient’s and family’s physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home.
Discussion: This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
The changing age profile of the human population globally means that the requirement for residential long-term care (LTC) for older adults is escalating, with an associated increase in deaths in these facilities. Health care assistants (HCAs), whose main role is provision of direct care to residents, comprise the largest staff cohort in residential care for older adults. The purpose of this scoping review was to explore three key areas related to HCAs: their role and responsibilities, end-of-life (EOL) education, and their views and experiences of caring for residents at EOL. The literature search included five databases and 32 studies were ultimately reviewed. Key issues were as follows: HCAs feel marginalized and undervalued, they need and desire EOL education, and resident deaths impact negatively on them. The changing care needs for older adults with complex comorbidities at EOL in LTC will place an increased onus on HCAs' skills, knowledge, and personal and professional development.
Aim: Aim was to describe how Registered Nurses (RNs) and assistant nurses (ANs) working in residential care homes and home care perceived quality end-of-life care after implementation of the Liverpool Care Pathway (LCP) in terms of subjective importance of care aspects and actual care given.
Design: Descriptive cross-sectional.
Methods: Registered Nurses (N = 22; 100% response rate) and ANs (N = 120; 59% response rate) working in a Swedish municipality. Data collection with a study-specific questionnaire (50 items) about perceived reality (PR) and subjective importance (SI). Non-parametric statistics.
Results: Implementation of the LCP ensured systematic assessment and alleviation of patients' symptoms and needs. The ANs, more than the RNs, perceived that the patients received the best possible nursing and medical care (p = .01). Both groups considered that communication with patients and families as well as the information exchange between the team members was facilitated. Areas for improvement were identified about psychological and existential support and patients and families' participation in care.
Background and purpose: A palliative approach involves adapting and integrating palliative care knowledge and expertise earlier on and across sectors of care for people who have life-limiting chronic conditions. This study explored the extent to which nurses’ and care aides’ self-perceived palliative care competence may explain variation in the application of a palliative approach across nursing care settings that do not specialize in palliative care. A secondary objective was to psychometrically evaluate an instrument for measuring self-perceived palliative care competence.
Methods and procedures: Data were collected via a cross-sectional survey (N = 1468) of registered nurses, licensed practical nurses, and care aides at 114 randomly selected hospital-based medical units, home care offices, and residential care facilities. The questionnaire included the Palliative Care Nursing Self-Competence Scale. Multilevel logistic regression and multigroup confirmatory factor analyses were conducted.
Results: In addition to self-perceived competence, factors associated with a palliative approach include identification of patients who have life-limiting conditions and who would benefit from a palliative approach, and work environment. The psychometric analyses of the Palliative Care Nursing Self-Competence Scale confirmed a 10-dimensional structure, strong internal consistency reliability, and measurement equivalence.
Discussion and conclusion: This study provides information for future development and research on interventions for integrating a palliative approach.
Aide-soignante dans un service de médecine polyvalente avec lits identifiés soins palliatifs, j'ai, au cours de mon exercice professionnel, été confrontée à une situation qui m'a particulièrement marquée, touchée.
En effet j'ai accompagné une personne que je connaissais déjà dans un cadre privé. Une relation particulière avec cette patiente s'est instaurée dès son arrivée à l'hôpital et a influencé ma posture professionnelle.
Cette situation, point de départ de ce mémoire réflexif, m'a conduit à poser la problématique suivante : "en quoi une relation privilégiée avec une patiente dans un contexte de soins palliatifs influence la posture professionnelle".
Je me suis intéressée aux concepts d'accompagnement, du prendre soin, de la relation soignant-soigné et de la posture professionnnelle.
Au travers de ce mémoire, j'ai pu constater que la relation soignant soigné est riche d'enseignements et que la quête de la juste proximité à l'autre n'est jamais terminée, elle se situe au centre d'ajustements permanents, parce-que chaque personne est unique.
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.
La phase terminale de la vie est parfois source de fortes émotions. Elle demande une présence et une communication adaptée de la part de tous les soignants auprès de la personne en fin de vie. L’aide-soignant, qui est au plus près de la personne, est quelquefois témoin de confidences et de propos existentiels. Il s’agit d’ajuster sa présence. Illustration.
La loi Leonetti du 22 avril 2005 a posé un cadre législatif définissant l’obstination déraisonnable, que l’on nommait précédemment l’acharnement thérapeutique. La décision de ce qui est raisonnable ou non dans la mise en place ou la poursuite de traitements soit curatifs soit de maintien artificiel de la vie renvoie à une question éthique sur la fin de vie. C’est en interrogeant cette éthique de fin de vie que l’aide-soignante peut parvenir à vivre au mieux toute décision médicale en lien avec une problématique d’obstination déraisonnable.
Background: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors.
Objectives: Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication.
Design: Cross-sectional survey.
Settings: Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n=290).
Participants: Nurses and care assistants (n=1680) completed a self-efficacy scale and were included in the analyses.
Methods: Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level.
Results: The proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30-2.65]); nurses (compared to care assistants) (1.75 [1.20-2.54]); completion of higher secondary or tertiary education (respectively 2.22 [1.53-3.21] and 3.11 [2.05-4.71]; formal palliative care training (1.71 [1.32-2.21]); working in direct care for over 10 years (1.53 [1.14-2.05]); working in a facility with care provided by onsite nurses and care assistants and offsite physicians (1.86 [1.30-2.65]); and working in a facility where guidelines for palliative care were available (1.39 [1.03-1.88]).
Conclusion: Self-efficacy towards end-of-life communication was most often low in Italy and most often high in the Netherlands. In all countries, low self-efficacy was found relatively often for discussion of prognosis. Palliative care education and guidelines for palliative care could improve the self-efficacy of care staff.
The average expected lifespan in Canadian long-term care (LTC) homes is now less than two years post-admission, making LTC a palliative care setting. As little is known about the readiness of LTC staff in Canada to embrace a palliative care mandate, the main objective of this study was to assess qualities relevant to palliative care, including personal emotional wellbeing, palliative care self-efficacy and person-centred practices (e.g. knowing the person, comfort care). A convenience sample of 228 professional and non-professional staff (e.g. nurses and nursing assistants) across four Canadian LTC homes participated in a survey. Burnout, secondary traumatic stress and poor job satisfaction were well below accepted thresholds, e.g. burnout: mean = 20.49 (standard deviation (SD) = 5.39) for professionals; mean = 22.09 (SD = 4.98) for non-professionals; cut score = 42. Furthermore, only 0–1 per cent of each group showed a score above cut-off for any of these variables. Reported self-efficacy was moderate, e.g. efficacy in delivery: mean = 18.63 (SD = 6.29) for professionals; mean = 15.33 (SD = 7.52) for non-professionals; maximum = 32. The same was true of self-reported person-centred care, e.g. knowing the person; mean = 22.05 (SD = 6.55) for professionals; mean = 22.91 (SD = 6.16) for non-professionals; maximum = 35. t-Tests showed that non-professional staff reported relatively higher levels of burnout, while professional staff reported greater job satisfaction and self-efficacy (p < 0.05). There was no difference in secondary traumatic stress or person-centred care (p > 0.05). Overall, these results suggest that the emotional wellbeing of the Canadian LTC workforce is unlikely to impede effective palliative care. However, palliative care self-efficacy and person-centred care can be further cultivated in this context.
BACKGROUND: End-of-life conversations are rarely initiated by care staff in long-term care facilities. A possible explanation is care staff's lack of self-efficacy in such conversations. Research into the determinants of self-efficacy for nurses and care assistants in end-of-life communication is scarce and self-efficacy might differ between care staff of mental health facilities, nursing homes, and care homes. This study aimed to explore differences between care staff in mental health facilities, nursing homes, and care homes with regard to knowledge about palliative care, time pressure, and self-efficacy in end-of-life communication, as well as aiming to identify determinants of high self-efficacy in end-of-life communication.
METHODS: Two cross-sectional Dutch studies, one in mental health facilities and one in nursing and care homes (PACE study). Nurses and care assistants were invited to complete a questionnaire in 2015. Multivariable logistic regression analyses were performed to identify determinants of high self-efficacy.
RESULTS: Five hundred forty one nurses and care assistants completed a survey; 137 worked in mental health facilities, 172 in nursing homes, and 232 in care homes. Care staff at mental health facilities were the most knowledgeable about the World Health Organization’s definition of palliative care: 76% answered 4–5 out of 5 items correctly compared to 38% of nursing home staff and 40% of care home staff (p < 0.001). Around 60% of care staff in all settings experienced time pressure. Care staff had high self-efficacy regarding end-of-life communication with patients: the overall mean score across all facilities was 5.47 out of 7 (standard deviation 1.25). Determinants of high self-efficacy were working in a mental health facility, age > 36, female, with formal palliative care training, and knowledge of the palliative care definition.
CONCLUSION: Mental healthcare staff knew more about palliative care and had higher self-efficacy in end-of-life communication compared to nursing and care home staff. Educating care staff about providing palliative care and training them in it might improve end-of-life communication in these facilities.
L’aide-soignante de nuit en établissement d’hébergement pour personnes âgées dépendantes peut être conduite à accompagner des personnes en fin de vie. Une réflexion éthique pluriprofessionnelle permet de gérer au mieux des situations qui demeurent singulières et hautement émotionnelles.
BACKGROUND: Delirium is a common condition occurring in 13-42% of people admitted to palliative care units and up to 88% of these patients are at the end of their lives. It is frequently unrecognised and distressing to all those affected-patients, families and health professionals. In addition, there is considerable uncertainty surrounding its trajectory and optimal management, both of which can be inconsistent.
AIMS: This study aims to explore the experience of nursing staff who are caring for patients with delirium in the hospice environment and understand any potential barriers to its management.
METHODS: Semistructured interviews using emotional touchpoints were conducted with 12 nurses and six healthcare assistants in three hospices in North East England. Data was analysed using interpretative phenomenological analysis.
FINDINGS:: The results highlighted gaps in knowledge and understanding in the management of delirium. The results demonstrated delirium had significant emotional effects, which were associated with uncertainty in managing the condition and the impact of this uncertainty on the relationship between staff and patients.
CONCLUSION:: This study highlights the emotional impact of caring for patients with delirium. Future work is needed to address the areas of uncertainty identified and ascertain how to best support nursing staff in these challenges.
Objectifs: la réunion de staff de soins palliatifs porte le symbole de l’interdisciplinarité. Mais qu’en est-il de la participation réelle des aides-soignants en son sein ? Si certains auteurs affirment l’intérêt de les intégrer aux discussions, plusieurs études suggèrent que leur participation dans d’autres services n’est pas optimale. L’objectif était d’étudier la participation des aides-soignants en réunion de staff de soins palliatifs et de mieux comprendre ses déterminants pour pouvoir proposer des pistes d’amélioration pratiques.
Méthodes: Une étude qualitative, par entretiens semi-directifs auprès d’aides-soignants et de médecins, a été menée dans trois services accueillant des patients en soins palliatifs (unité ou lits identifiés de soins palliatifs, service de médecine). L’analyse des verbatims a été faite par codage thématique. Trente des 32 points de la grille internationale COREQ ont été respectés.
Résultats: Neuf aides-soignants et trois médecins ont été interrogés. La majorité des aides-soignants déclarait ne jamais ou peu participer. Les déterminants étaient multiples : organisationnels, communicationnels, liés aux protagonistes. Une analyse distanciée a fait ressortir trois grandes « logiques » contraignant ces échanges : la hiérarchie, l’identité socioprofessionnelle des aides-soignants, l’organisation matérielle et institutionnelle.
Conclusion : La participation des aides-soignants aux réunions d’équipe ne semble pas optimale malgré le cadre a priori favorisant des soins palliatifs. L’analyse de ses déterminants fait ressortir trois grandes « logiques » dont aucune n’est facilement modifiable. Néanmoins, leur identification permet de proposer des pistes d’amélioration qui pourront être évaluées par des travaux ultérieurs.
BACKGROUND: Certified nursing assistants (CNAs) in palliative care units often encounter the death of patients and undergo emotional burdens because of their altruistic practices. However, the influences of altruism and perceptions of death on the work morale of CNAs remain unclear. The fact that morale can be improved by modifying related factors justifies the necessity of a theoretical model of morale for CNAs. However, such a model is currently absent. Based on relevant literature, factors including altruism, social support, perceptions of death, and job satisfaction are related to morale through the mediation of job stress.
AIM: This study was aimed toward determining the influencing factors and developing a structural model of morale with regard to CNAs working in palliative care units.
DESIGN: The hypothesized model was tested in a cross-sectional design with structural equation modeling using AMOS 23.
SETTING/PARTICIPANTS: A total of 413 CNAs from five hospice units in Taiwan participated in the survey.
RESULTS: Goodness-of-fit indexes, including 2/DF = 2.187, PGFI = 0.461, and PNFI = 0.462, among others, confirmed the modified model fit the data well. Altruism, social support, perceptions of death, and job satisfaction were negatively related to job stress (-0.238, -0.196, -0.204, and -0.131, respectively). Altruism and social support positively affected job satisfaction (0.635 and 0.553). Factors directly affecting morale included altruism, social support, job stress, and job satisfaction (0.837, 0.711, -0.244, and 0.540, respectively). The relationship between altruism and morale was the strongest among all the direct paths toward morale. Job stress was the major mediator in these relationships.
CONCLUSION: Altruism is imperative for morale. The confirmed model is called the Five Constructs to Morale (5CM) model. These findings indicate the need to assess the levels of altruism and perceptions of death during the recruitment of CNAs. From the perspective of human resource management and organizational behavior, CNAs with a high level of altruism and a positive attitude toward death assure the well-being of end of life patients because of work involvement and commitment to the challenging work of hospice care. The cultivation of a supportive environment and coping strategies are suggested for the management of CNAs facing patient death. Hospice care decision makers should carefully assess morale levels among health professionals by applying the 5CM model. Identifying modifiable factors that can improve morale among nursing staff in hospice care to ensure work fulfillment and quality care merits emphasis in clinical practice. The establishment of effective strategies to facilitate the work morale of nursing staff is suggested for palliative care units. Morale improvement related task should be a global public health priority.
Aim: To explore assistant nurses' experiences and perceptions of both positive and negative aspects of providing palliative care for older people in residential care facilities.
Design: A qualitative explorative study.
Methods: Critical incidents were collected through semi-structured face-to-face interviews and analysed by performing a qualitative content analysis.
Results: A total of 40 critical incidents from daily work was described by assistant nurses. The results showed that close cooperation between unlicensed and licensed professionals was crucial to provide good care but was sometimes negatively affected by the organizational structure. The availability of professionals was identified as a critical factor in providing good care at the end of life in a consultative organization. The most prominent findings were those that indicated that, especially in a consultative organization, there seems to be a need for clear roles, comprehensive and clear care plans and a solid support structure to ensure continuity of care.
BACKGROUND: Professional societies call for integration of end-of-life discussions early in the trajectory of heart failure, yet it remains unclear where current practices stand in relation to these recommendations. We sought to describe the perceptions and attitudes of caregivers in cardiology regarding end-of-life situations.
METHODS: We performed a qualitative study using semi-directive interviews in the cardiology department of a university teaching hospital in France. Physicians, nurses and nurses' aides working full-time in the department at the time of the study were eligible. Participants were asked to describe how they experienced end-of-life situations. Interviews were recorded, transcribed and coded using thematic analysis to identify major and secondary themes.
RESULTS: All physicians (N = 16)(average age 43.5 ± 13 years), 16 nurses (average age 38.5 ± 7.6 years) and 5 nurses’ aides (average age 49 ± 7.8 years) participated. Interviews were held between 30 March and 17 July 2017. The main themes to emerge from the physicians’ discourse were the concept of cardiology being a very active discipline, and a very curative frame of mind was prevalent. Communication (with paramedical staff, patients and families) was deemed to be important. Advance directives were thought to be rare, and not especially useful. Nurses also reported communication as a major issue, but their form of communication is bounded by several factors (physicians’ prior discourse, legislation). They commonly engage in reconciling: between the approach (curative or palliative) and the reality of the treatment prescribed; performing curative interventions in patients they deem to be dying cases causes them distress. The emergency context prevents nurses from taking the time necessary to engage in end-of-life discussions. They engage in comfort-giving behaviors to maximize patient comfort.
CONCLUSION: Current perceptions and practices vis-à-vis end-of-life situations in our department are individual, heterogeneous and not yet aligned with recommendations of professional societies.