Facilitating home birth in perinatal palliative care: A case report.

BACKGROUND: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home birth is usually only offered in low-risk pregnancies. CASE: A couple who received an antenatal diagnosis of hypoplastic left heart syndrome and who had made a plan to provide palliative care to their baby after birth requested the option of a home birth. POSSIBLE COURSES OF ACTION: Recommend birth at hospital or explore the possibility of a home birth with perinatal palliative care support. FORMULATION OF A PLAN: Multidisciplinary discussion and collaboration enabled a plan for home birth to be made which anticipated potential complications. OUTCOME: The baby was born at home and died on day 5 of life receiving outreach nursing, paediatric and palliative care support and buccal and oral opioids for symptom management. We include reflections from the family on the importance of this experience. LESSONS: We provide a list of potential criteria for considering home birth in the setting of perinatal palliative care. VIEW: Facilitating a home birth in the setting of perinatal palliative care is an option that can be hugely valued by families, but this service may be practically difficult to deliver in many contexts. Further research is needed to understand the preferences of women and families receiving perinatal palliative care.

Applied patient-level palliative care interventions designed to meet the needs of sexual and gender minorities: A scoping review and qualitative content analysis of how to support sexual and gender minorities at end of life.

BACKGROUND: Sexual and gender minorities experience considerable health disparities across the life span. End of life presents unique challenges for this population, further exacerbating existing disparities. AIM: We aimed to identify applied patient-level palliative care interventions for sexual and gender minorities and describe how said interventions met the needs of these populations at end of life. DESIGN: We conducted a scoping review in keeping with the updated Arksey and O'Malley Framework. All included reports were analyzed qualitatively to describe the intervention and summarize thematically how it met the needs of sexual and gender minorities at end of life. DATA SOURCES: We conducted searches in MEDLINE, EMBASE, PsychInfo, and CINAHL from 1946 to June 10, 2023. Reports were eligible for inclusion if they described a palliative care intervention delivered to sexual and gender minorities, and if the palliative care intervention responded to at least one specific need of the sexual and gender minority population(s) in question. RESULTS: We included and summarized 27 reports. We identified three overarching themes describing how palliative care interventions responded to the needs of sexual and gender minorities at end of life. CONCLUSIONS: This review responds to a need to improve palliative care delivery for sexual and gender minorities. Recommendations derived from these interventions, including how to center and advocate for sexual and gender minorities at end of life, can be applied by any interdisciplinary palliative care provider.

Building a programme theory of a specialist paediatric palliative and hospice care programme: development process and methodological reflection.

BACKGROUND: Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting in an increased need for palliative care for this population. Although the need for paediatric palliative and hospice care is growing, meaningful outcome evaluation to demonstrate its effectiveness as a complex healthcare intervention is in its early stages. For complex interventions (programmes), theory-based evaluations have grown in prominence in recent years. They seek to understand how and why an intervention works by uncovering its underlying mechanisms by means of programme theory. To support both outcome evaluation in paediatric palliative care and a reflective practice of programme theorizing, we aimed to describe the construction of a programme theory for a specialist paediatric palliative and hospice care programme in Austria and to offer a reflective account of its development process. METHODS: We drew on a combination of theory-based evaluation frameworks to construct a programme theory consisting of an action and a change component. Through multiple iterations, incorporating different stakeholders' perspectives and drawing on different sources of knowledge and theory, we theorized how and why the programme likely achieves its intended outcomes. RESULTS: The programme theory outlines the proposed chains of events, causal mechanisms and outcomes of a specialist paediatric palliative and hospice care programme for children and families in several areas corresponding to its main conceptual tenets. Through a range of activities and interventions, the programme triggers coping and adaptation mechanisms that ultimately contribute to family and child wellbeing in physical, psychological, social, and spiritual dimensions. Established trust and partnership between children/families and healthcare professionals as well as a person-centered and family-centered approach were identified as enabling factors. CONCLUSIONS: Our findings provide insights into how a specialized paediatric palliative and hospice care programme works to achieve its intended outcomes for children and families. This helps demonstrate its impact, contributing to meaningful outcome evaluation and service improvement.

'I tried to get into their shoes and their culture'. Care worker experiences in cultural end-of-life care: Interpretative phenomenological analysis.

AIM: What are care workers' lived experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care? DESIGN: Interpretative phenomenological analysis METHODS: The lived experiences of 11 care workers within the Australian Capital Territory and region who have cared for someone of a culturally and linguistically diverse background during end-of-life care were captured. Each care worker was interviewed individually and answered a series of semi-structured open-ended questions. RESULTS: Using interpretative phenomenological analysis, three group experiential themes were derived: (i) navigating cultural shock and death, (ii) the hard work of communication and (iii) searching for deeper connections with client and self. Within these were key elements: Care workers worked hard to embrace cultural diversity, but struggled to meet cultural needs, particularly in relation to the unpredictable timeline of dying. Care workers relied on themselves and their improvisation, but experienced self-blame for inadequate care and unexpected challenges in communication. Blurred boundaries in relation to therapeutic relationships were apparent, and care workers felt alone with emotional burden, but also found belonging and joy in their work. CONCLUSION: Care workers' experiences are vital to understanding the barriers and challenges in providing culturally appropriate end-of-life care. Care workers repeatedly experienced an emotional burden and vicarious trauma throughout their work in this field. Care workers were self-reliant in all aspects of care including communication and consistently desired education, training, resources and support. There remains inadequate research on care workers and their role within the Australian healthcare context. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Care workers need access to support and resources including professional translators to provide culturally appropriate end-of-life care. Workplaces and registered nurses should facilitate training and provide guidance to care workers. A person-centred approach is required during all client encounters while maintaining appropriate therapeutic relationships including therapeutic use of self and professional boundaries. REPORTING METHOD: COREQ Checklist. PATIENT OR PUBLIC CONTRIBUTION: During this study, care workers were interviewed on their experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care. Patients were not directly involved within this study, but their views may have been expressed through the care workers' experience.

Facilitating equitable access to hospice care in socially deprived areas: A mixed methods multiple case study.

BACKGROUND: There is uncertainty about the factors influencing inequities in access to palliative care in socially deprived areas, including the role of service models and professional perceptions. AIM: To explore the relationship between social deprivation and access to hospice care, including factors influencing access and professional experiences of providing care. DESIGN: A mixed-methods multiple case study approach was used. Hospice referrals data were analysed using generalised linear mixed models and other regression analyses. Qualitative interviews with healthcare professionals were analysed using thematic analysis. Findings from different areas (cases) were compared in a cross-case analysis. SETTING: The study took place in North West England, using data from three hospices (8699 hospice patients) and interviews with 42 healthcare professionals. RESULTS: Social deprivation was not statistically significantly, or consistently, associated with hospice referrals in the three cases (Case 1, Incidence Rate Ratio 1.04, p = 0.75; Case 2, Incidence Rate Ratio 1.09, p = 0.15, Case 3, Incidence Rate Ratio 0.88, p = 0.35). Hospice data and interviews suggest the model of hospice care, including working relationship with hospitals, and the local nature of social deprivation influenced access. Circumstances associated with social deprivation can conflict with professional expectations within palliative care. CONCLUSION: Hospice care in the UK can be organised in ways that facilitate referrals of patients from socially deprived areas, although uncertainty about what constitutes need limits conclusions about equity. Grounding professional narratives around expectations, responsibility, and choice in frameworks that recognise the sociostructural influences on end-of-life circumstances may help to foster more equitable palliative care.

Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation.

BACKGROUND: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. AIM: To explore what works best to promote family carers' experiences of hospice-at-home. DESIGN: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members. SETTING/PARTICIPANTS: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78). RESULTS: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient-carer dyad. CONCLUSIONS: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having 'time to care', communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death.

Palliative care in severe mental illnesses.

In this editorial, we highlight the interaction between patients who are diagnosed with severe mental illness and their treatment within palliative care, a clinical area of specialized focus which has a multitude of complex impacts on affected patients, their (chosen) family members and caregivers, as well as the healthcare professionals who are caring for them.

Attitudes and influencing factors of nursing assistants towards hospice and palliative care nursing in chinese nursing homes: a cross-sectional study.

BACKGROUND: Hospice and palliative care nursing (HPCN) in China is mainly available at public primary care institutions, where nursing homes (NHs) are rarely involved. Nursing assistants (NAs) play an essential role in HPCN multidisciplinary teams, but little is known about their attitudes towards HPCN and related factors. METHODS: A cross-sectional study was designed to evaluate NAs' attitudes towards HPCN with an indigenised scale in Shanghai. A total of 165 formal NAs were recruited from 3 urban and 2 suburban NHs between October 2021 and January 2022. The questionnaire was composed of four parts: demographic characteristics, attitudes (20 items with four sub-concepts), knowledge (nine items), and training needs (nine items). Descriptive statistics, independent samples t-test, one-way ANOVA, Pearson's correlation, and multiple linear regression were performed to analyse NAs' attitudes, influencing factors, and their correlations. RESULTS: A total of 156 questionnaires were valid. The mean score of attitudes was 72.44 ± 9.56 (range:55-99), with a mean item score of 3.6 ± 0.5 (range:1-5). The highest score rate was "perception of the benefits for the life quality promotion" (81.23%), and the lowest score rate was "perception of the threats from the worsening conditions of advanced patients" (59.92%). NAs' attitudes towards HPCN were positively correlated with their knowledge score (r = 0.46, P < 0.01) and training needs (r = 0.33, P < 0.01). Marital status (ß = 0.185), previous training experience (ß = 0.201), location of NHs (ß = 0.193), knowledge (ß = 0.294), and training needs (ß = 0.157) for HPCN constituted significant predictors of attitudes (P < 0.05), which explained 30.8% of the overall variance. CONCLUSION: NAs' attitudes towards HPCN were moderate, but their knowledge should be improved. Targeted training is highly recommended to improve the participation of positive and enabled NAs and to promote high-quality universal coverage of HPCN in NHs.

Psychosocial burdens in palliative care - a longitudinal cohort study in nursing homes and impacts of the COVID-19 pandemic.

BACKGROUND: In Germany, palliative care in nursing homes is becoming increasingly important. Simultaneously, nursing homes are particularly affected by the COVID-19 pandemic due to their vulnerable residents leading to increased burdens for nursing staff. Although a separate unit for palliative care may not be present in nursing homes as it is in, e.g., hospitals, palliative care occupies a large portion of the workday in nursing homes. As no study addressing this topic could be found, this study focused on the research questions of how the psychosocial burdens faced by nursing staff in palliative care have been affected by the COVID-19 pandemic and how those burdens differ from the psychosocial burdens encountered in general care. METHODS: Basen on a longitudinal cohort study design, a total of 113 nurses, nursing assistants and caregivers drawn from two nursing homes in North Rhine-Westphalia, Germany, were surveyed pre-pandemic in 2019 and during the pandemic in 2022 using the Copenhagen Psychosocial Questionnaire (COPSOQ) III. Data were examined descriptively following the standardised COPSOQ procedure. Additionally, chi-squared test was conducted to investigate the homogeneity between the groups. Mean differences (MD) were provided and Cohen's d was calculated to evaluate relevant differences in psychosocial burdens between 2019 and 2022. In a second step, t-tests were performed to test statistical significance. RESULTS: Relevant positive changes could be identified in 'Quantitative demands' (d = 0.321; MD = 5.9), 'Influence at work' (d = 0.244; MD = 5.4), 'Job insecurity' (d = 0.321; MD = 6.5), 'Insecurity over working conditions' (d = 0.296; MD = 6.8), 'Burnout symptoms related to residents' (d = 0.201; MD = 3.8), 'Degrees of freedom' (d = 0.455; MD = 9.6) and 'Presenteeism' (d = 0.425; MD = 11.8). Relevant negative changes were found in 'Dissolution' (d = 0.217; MD = 5.4; i.e., setting boundaries between work and private life), 'Role conflicts' (d = 0.282; MD = 5.5), 'Role clarity' (d = 0.251; MD = 3.3) and 'Burnout symptoms related to relatives' (d = 0.318; MD = 6.0). Relevant changes that were statistically significant according to the t-test could be identified in 'Degrees of freedom' (t-value=-2.40; p = 0.018) and 'Presenteeism' (t-value = 2.26; p = 0.026). Responses to questions concerning nursing homes' handling of the COVID-19 pandemic exhibited a mean score of 68.2 for 'Organisation/communication' and a mean score of 78.1 concerning 'Operational measures and overall assessment' during the COVID-19 pandemic. CONCLUSIONS: Besides negative changes during the COVID-19 pandemic, some categories showed more positive results. The burdens of palliative care in nursing homes may be perceived differently than those of general care in nursing homes. Furthermore, the results indicate that perceptions of challenges in palliative care in nursing homes during the pandemic seem to be highly dependent on organisational working conditions and support that can strengthen the individual resources and resilience of the staff.

Building bridges of excellence: a comprehensive competence framework for nurses in hospice and palliative care-a mixed method study.

BACKGROUND: Hospice and Palliative Care (HPC) is in high demand in China; however, the country is facing the shortage of qualified HPC nurses. A well-suited competence framework is needed to promote HPC human resource development. Nevertheless, existing unstandardized single-structured frameworks may not be sufficient to meet this need. This study aimed at constructing a comprehensive multi-structured HPC competence framework for nurses. METHODS: This study employed a mixed-method approach, including a systematic review and qualitative interview for HPC competence profile extraction, a two-round Delphi survey to determine the competences for the framework, and a cross-sectional study for framework structure exploration. The competence profiles were extracted from publications from academic databases and interviews recruiting nurses working in the HPC field. The research team synthesized profiles and transferred them to competences utilizing existing competence dictionaries. These synthesized competences were then subjected to Delphi expert panels to determine the framework elements. The study analyzed theoretical structure of the framework through exploratory factor analysis (EFA) based on a cross-sectional study receiving 491 valid questionnaires. RESULTS: The systematic review involved 30 publications from 10 countries between 1995 and 2021, while 13 nurses from three hospitals were interviewed. In total, 87 and 48 competence profiles were respectively extracted from systematic review and interview and later synthesized into 32 competences. After the Delphi survey, 25 competences were incorporated into the HPC competence framework for nurses. The EFA found a two-factor structure, with factor 1 comprising 18 competences namely Basic Competences; factor 2 concluding 7 competences namely Developmental Competences. CONCLUSIONS: The two-factor HPC competence framework provided valuable insights into the need and directions of Chinese HPC nurses' development.

Dimensions of good palliative nursing care: Expert panel consensus and perceptions of palliative professionals.

AIMS AND OBJECTIVES: To analyse the dimensions of quality of palliative nursing care and to explore the perceptions of professionals for the development and validation of the Palliative Nursing Care Quality Scale. BACKGROUND: The study of palliative nursing care quality has been approached from analysis of the competencies of palliative care nurses, based on various theoretical models. However, there are fewer qualitative empirical studies that have evaluated what good palliative nursing care is and what its dimensions are. DESIGN: Mixed-method, Delphi approach and exploratory qualitative study. METHODS: Consensus by a panel of experts using the Delphi technique and semi-structured interviews. The study was reported in a comprehensive manner following COREQ criteria. Data collection took place between January and June 2018. RESULTS: The eight-person expert panel reached consensus on the following dimensions of the Palliative Nursing Care Quality Scale: control and relief of symptoms, family and/or primary caregiver, therapeutic relationship, spiritual support and continuity of care. Thematic analysis of ten interviews identified four emergent themes related to good nursing care: (1) the patient and family as a whole; (2) finding meaning; (3) responsible communication; and (4) caring for the human element. CONCLUSIONS: The quality of palliative nursing care goes beyond providing comprehensive care; it means meticulously looking after every detail of what is important to the patient. The expectations of professionals are not as important. Instead, care should be based primarily on the needs and respect for the wishes of the patient and their family. RELEVANCE TO CLINICAL PRACTICE: Specifying the quality of nursing care in routine practice and reaching a consensus on its dimensions means moving towards excellence in care, as well as improving the professional profile of advanced practice palliative care nurses. PATIENT OR PUBLIC CONTRIBUTION: Two primary caregivers participated in the panel of experts and the semi-structured interview.

A simple risk score list can be used to predict the occurrence of delirium in patients admitted to inpatient hospice care: A medical record study.

OBJECTIVE: This study aimed to examine whether the 10-item Risk Score List (RSL) accurately predicts delirium in patients admitted to inpatient hospice care and whether this instrument can be simplified. Determining the risk for developing delirium can help to treat these patients in a timely manner. METHODS: This was a retrospective medical record study in patients who died in 2019 or 2020 in three hospices. Predictive values were examined using Cox regression analysis, crosstabs, and C-statistic. RESULTS: In total, 240 patients were included. Median age at admission was 78 (IQR 70-84) years. Primary diagnosis most often was cancer (n = 186, 78%); 173 (72%) patients had an increased risk of delirium according to RSL, of whom 120 (69%) developed delirium. Overall, 147 (61%) patients developed delirium. The RSL significantly predicted future delirium (HR 3.25, CI 1.87-5.65, p < 0.01) and had a sensitivity of 85%, a specificity of 43%, positive predictive value of 62%, negative predictive value of 73%, and a C-statistic of 0.64. Simplifying the RSL to four items still significantly predicted future delirium, with similar predictive values. CONCLUSION: Delirium occurs in more than half of patients admitted to hospice care. The RSL can be simplified to four items, without compromising on predictive accuracy.

Barriers to recruitment into emergency department-initiated palliative care: a sub-study of a multi-site, randomized controlled trial.

BACKGROUND: Emergency department (ED) visits among older adults are common near the end of life. Palliative care has been shown to reduce ED visits and to increase quality of life among patients, but recruitment into these programs is often challenging. This descriptive analysis explores the barriers to enrolling seriously ill patients scheduled for discharge from the ED into palliative care research. METHODS: This descriptive sub-study aims to assess the reasons why patients with advanced illness scheduled for discharge home from 11 EDs across the United States decline to participate in Emergency Medicine Palliative Care Access (EMPallA), a Phase IV randomized controlled trial (RCT) comparing two modes of palliative care delivery. Our aim was to understand why patients decline to enroll to improve future recruitment rates and expand care for patients discharged home from the ED. Research coordinators documented reasons that patients declined to enroll in the larger EMPallA trial; reasons for refusing participation were independently analyzed by two researchers to identify overarching themes. RESULTS: Enrollment rate across all sites was 45%; of the 504 eligible patients who declined participation, 47% (n = 237) declined for reasons related to illness severity. 28% of refusals (n = 143) were related to the mode of palliative care delivery, while 24% (n = 123) were due to misconceptions or stigma related to palliative care. Less commonly, patients refused due to general research barriers (16.5%), family/caregiver barriers (11.7%), and physician-related barriers (< 1%). CONCLUSIONS: Patients with advanced illnesses presenting to the ED often refuse to participate in palliative care research due to the severity of their illness, the mode of care delivery, and misconceptions about palliative care. In contrast with other studies, our study found minimal physician gatekeeping, which may be the result of both changing attitudes toward palliative care and the nature of the ED setting. Robust training programs are crucial to overcome these misconceptions and to educate patients and providers about the role of palliative care. Future palliative care programs and study designs should recognize the burden this vulnerable population endures and consider alternative modes of care delivery in an effort to increase participation and enrollment. CLINICAL TRIALS REGISTRATION: NCT03325985 , October 30, 2017.

Are nurse`s needs assessment methods robust enough to recognise palliative care needs in people with dementia? A scoping review.

BACKGROUND: People with dementia are most at risk of experiencing serious health related suffering, if they do not have a palliative care approach introduced early enough in the illness. It can be challenging for nurses to assess experienced needs of people, who are thought no longer able to self-report such as people with dementia. Assessment help to understand the care the patient and their family need promptly. It is unknown how nurses recognise holistic palliative care needs in people with dementia during routine care. METHODS: Scoping review where EMBASE, MEDLINE, CINAHL, PsycInfo databases, and references were searched with an advanced search strategy, which was built on three concepts (nurses, dementia, and nursing assessment) using corresponding Medical Subject Headings. Data were charted in a piloted extraction form, based on the assessment domains within the nursing process followed by summarise and synthesise results narratively. RESULTS: 37 out of 2,028 qualitative and quantitative articles published between 2000 and 2021, and relating to 2600 + nurses, were identified. Pain was sole focus of assessment in 29 articles, leaving 8 articles to describe assessment of additional needs (e.g., discomfort). Nurses working in a nursing home assess pain and other needs by observing the persons with dementia behaviour during routine care. Nurses in the acute care setting are more likely to assess symptoms with standard assessment tools at admission and evaluate symptoms by observational methods. Across settings, about one third of pain assessments are supported by person-centred pain assessment tools. Assessments were mostly triggered when the person with dementia vocalised discomfort or a change in usual behaviour was observed. Nurses rely on family members and colleagues to gain more information about needs experienced by people with dementia. CONCLUSION: There is a scarcity of evidence about techniques and methods used by nurses to assess needs other than pain experienced by people with dementia. A holistic, person-centred screening tool to aid real-time observations at the bedside and used in conversations with health care professionals and families/friends, may improve need recognition other than pain, to ensure holistic needs could then be addressed timely to improve care in people with dementia.

Quality of palliative nursing care: Meaning, death anxiety, and the mediating role of well-being.

BACKGROUND: There is increasing concern regarding the quality of palliative nursing care. However, despite the growing number of studies identifying related variables, there is still a paucity of studies analyzing models of how these variables interrelate. OBJECTIVE: The study aimed to identify the role played in the quality of palliative care of nursing professionals by the variables meaning and death anxiety and to investigate the mediating role of psychological well-being and engagement. METHOD: 176 palliative nursing professionals participated, selected by non-probabilistic convenience sampling using the snowball method. A simple mediation analysis and a multiple mediator model were performed in parallel, and data were collected using a paper and online questionnaire between January and May 2018. RESULTS: Well-being mediated the impact of meaning (indirect effect = 0.096, SE = 0.044, 95% confidence interval (CI): 0.028, 0.213) and death anxiety (indirect effect = -0.032, SE = 0.013, 95% CI: -0.064, -0.010) on the quality of care. Engagement, on the other hand, only mediated the impact of meaning (indirect effect = 0.185, SE = 0.085, 95% CI: 0.035, 0.372), while the indirect effect of death anxiety with the quality of care through engagement was not statistically significant (indirect effect = 0.008, SE = 0.009, 95% CI: -0.004, 0.032). SIGNIFICANCE OF RESULTS: Death anxiety is not directly related to the quality of care, but rather has an effect through psychological well-being, a variable acting as a mediator between the two. The effect of meaning on the quality of care is explained by the mediation of both engagement and psychological well-being, and its impact on the quality of care is thereby mediated by more variables than death anxiety.

Nursing education on palliative care across Europe: Results and recommendations from the EAPC Taskforce on preparation for practice in palliative care nursing across the EU based on an online-survey and country reports.

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.

Early palliative care associated with lower costs for adults with advanced cancer: evidence from Hungary.

OBJECTIVE: Palliative Care Consult Service (PCCS) programme was established in Hungary to provide palliative care to hospitalised patients with complex needs and to coordinate integrated care across providers. The aim of this study was to measure the association of PCCS with healthcare costs from payer's perspective. METHODS: Study population consisted of patients with metastatic cancer, who were admitted to the Clinical Centre of the University of Pécs between 2014 and 2016. Patients who did not die within 180 days from enrolment were excluded. Patients receiving services from PCCS team (intervention patients) were compared to patients receiving usual care (controls). The two populations were matched using propensity scores. Data were obtained from electronic medical records linked to claims data. RESULTS: For patients who were involved in PCCS at least 60 days before their death, the costs of care outside the acute hospital were higher. However, this was offset by savings in hospital costs so that the total healthcare cost was significantly reduced (p = 0.034). The proportion of patients who died in the hospital was lower in the PCCS group compared to the usual care group (66% vs. 85%, p = 0.022). CONCLUSION: Timely initiation of palliative care for hospitalised patients is associated with cost savings for the healthcare system.

Health professionals' perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study.

BACKGROUND: End-stage cardiac and respiratory diseases are common in the UK. People with these end-stage conditions experience similar, or even worse, symptomatic suffering to cancer patients but are less likely to receive specialist palliative care services. The objective of this study is to explore health professional perceptions and current practices in relation to specialist palliative care for patients with end-stage cardiac and respiratory disease. METHODS: Qualitative study using in-depth interviews with health professionals, audio recorded and transcribed verbatim for thematic analysis. The study was conducted with doctors and nurses from cardiology, respiratory, and palliative care specialities in the UK. The participants had to be involved clinically in providing care to people with end-stage cardiac or respiratory diseases. RESULTS: A total of 16 health professionals participated (5 cardiology, 5 respiratory, and 6 palliative care). Participants reported variable disease trajectories in these diseases making deciding on timing of palliative care involvement difficult. This was complicated by lack of advance care planning discussions, attributed to poor communication, and lack of health professional time and confidence. Participants reported poor interdepartmental education and limited specialist palliative care involvement in multidisciplinary teams. CONCLUSIONS: Palliative care for end-stage cardiac and respiratory diseases needs more attention in research and practice. Better integration of advance care planning discussions and early patient education/professional awareness are needed to enable timely referral to palliative care. Moreover, increased interdepartmental working for health professionals via joint educational and clinical meetings is perceived as likely to support earlier and increased referral to specialist palliative care services.

The role of hospital nurses in shared decision-making about life-prolonging treatment: A qualitative interview study.

AIMS: To examine hospital nurses' perception of their actual and potential contribution to shared decision-making about life-prolonging treatment and their perception of the pre-conditions for such a contribution. DESIGN: A qualitative interview study. METHODS: Semi-structured face-to-face interviews were conducted with 18 hospital nurses who were involved in care for patients with life-threatening illnesses. Data were collected from October 2018-January 2019. The interviews were recorded, transcribed verbatim and analysed using thematic analysis by two researchers. RESULTS: Nurses experienced varying degrees of influence on decision-making about life-prolonging treatment. Besides, we identified different points of contact in the treatment trajectory at which nurses could be involved in treatment decision-making. Nurses' descriptions of behaviours that potentially contribute to shared decision-making were classified into three roles as follows: checking the quality of a decision, complementing shared decision-making and facilitating shared decision-making. Pre-conditions for fulfilling the roles identified in this study were: (a) the transfer of information among nurses and between nurses and other healthcare professionals; (b) a culture where there is a positive attitude to nurses' involvement in decision-making; (c) a good relationship with physicians; (d) knowledge and skills; (e) sufficient time; and (f) a good relationship with patients. CONCLUSION: Nurses described behaviour that reflected a supporting role in shared decision-making about patients' life-prolonging treatment, although not all nurses experienced this involvement as such. Nurses can enhance the shared decision-making process by checking the decision quality and by complementing and facilitating shared decision-making. IMPACT: Nurses are increasingly considered instrumental in the shared decision-making process. To facilitate their contribution, future research should focus on the possible impact of nurses' involvement in treatment decision-making and on evidence-based training to raise awareness and offer guidance for nurses on how to adopt this role.

Homecare nurses guide goals for care and care transitions in serious illness: A grounded theory of relationship-based care.

AIMS: To identify the process that homecare nurses use when recognizing serious illness, engaging patients and families in goals-for-care discussions and guiding transitions to comfort-focused care. DESIGN: Constructivist grounded theory. METHODS: Semi-structured focus group interviews of 31 homecare Registered Nurses were recorded and transcribed (June-August 2019). Line-by-line coding using the constant comparative method until saturation was achieved and a grounded theory was identified. Credibility, transferability, and confirmability establish study rigor. RESULTS: A grounded theory of relationship-based care. Nurses cogitate and act when recognizing serious illness. They have difficult conversations and support care transitions with wisdom and knowing, by identifying changes in illness trajectories and being informed and alert to diminishing quality of life. Nurses are skilled at engaging patients, families, and the team and accommodate care in the home for as long as possible, while manoeuvring through complex systems of care; ultimately relinquishing and guiding care to other providers and settings. However, nurses feel inadequately prepared and frustrated with a fragmented healthcare system and lack of collaboration among the team. CONCLUSION: This study identifies a grounded theory to support clinical decision-making and position homecare nurses as leaders in guiding goal care discussions and transitions to comfort-focused care. These findings reinforce the importance of developing health policy that ensures care continuity in serious illness. Further research is needed to improve relationships across care settings and enhance training for the delivery of comfort-focused care in the home as changing needs emerge during serious illness management.