Quality indicators for integrating oncology and home palliative care in Japan: modified Delphi study.

CONTEXT: Home palliative care service increases the chance of dying at home, particularly for patients with advanced cancer, but late referrals to home palliative care services still exist. Indicators for evaluating programs that can facilitate the integration of oncology and home palliative care have not been defined. OBJECTIVES: This study developed quality indicators for the integration of oncology and home palliative care in Japan. METHODS: We conducted a systematic literature review (Databases included CENTRAL, MEDLINE, EMBASE, and Emcare) and a modified Delphi study to develop the quality indicators. Panelists rated a potential list of indicators using a 9-point scale over three rounds according to two criteria: appropriateness and feasibility. The criterion for the adoption of candidate indicators was set at a total mean score of 7 or more. Final quality indicators with no disagreement were included. RESULTS: Of the 973 publications in our initial search, 12 studies were included. The preliminary list of quality indicators by systematic literature review comprised 50 items. In total, 37 panelists participated in the modified Delphi study. Ultimately, 18 indicators were identified from the following domains: structure in cancer hospitals, structure in home palliative care services, the process of home palliative care service delivery, less aggressive end-of-life care, patient's psychological comfort, caregiver's psychological comfort, and patient's satisfaction with home palliative care service. CONCLUSION: Comprehensive quality indicators for the integration of oncology and home palliative care were identified. These indicators may facilitate interdisciplinary collaboration between professional healthcare providers in both cancer hospitals and home palliative care services.

Implementation of quality indicators for palliative care for patients with incurable cancer at palliative care units in Germany (Quincie): a study protocol for a mixed-methods study.

INTRODUCTION: Guidelines are important tools for supporting quality management in the care of patients with cancer. However, in clinical practice barriers exist to their implementation. Consequently, Quincie aims at: (1) gaining a comprehensive picture of the implementation of quality indicators from the national guideline on palliative care for patients with incurable cancer in palliative care units and (2) describing the factors that facilitate and hinder their implementation to develop recommendations. METHODS AND ANALYSIS: The Quincie study follows a mixed-methods approach across two study phases. In phase 1, routinely collected data of 845 patients with incurable cancer from eight palliative care units in the commuting area of the Comprehensive Cancer Centre Lower Saxony will be analysed, regarding the implementation of 10 quality indicators from the national guideline on palliative care. Structural characteristics of the palliative care units will also be collected. In phase 2, recommendations for the practical implementation of the quality indicators, focusing on the achievement of the quality objectives identified in phase 1, will be developed in an implementation workshop. These recommendations will be subsequently agreed on via a Delphi survey. ETHICS AND DISSEMINATION: Ethical approval has been given by the ethics committee of the Hannover Medical School (first vote, No. 10567_BO_K_2022) and other relevant institutions. The results will provide urgently needed insights on the implementation of the national guideline on palliative care in clinical care and on the factors that facilitate and hinder this implementation. The results are expected to promote better care for patients with incurable cancer. The results will be directly reported to the participating palliative care units and will be published in relevant peer-reviewed journals. They will also be presented at national conferences. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00029965).

Palliative (farewell) culture in shared housing arrangements : The perspective of everyday nursing practice.

BACKGROUND: Shared housing arrangements (SHA) are alternatives to long-term care facilities for care-dependent people. The collective perspective of nursing professionals working in SHA in dealing with death and dying is missing in recent studies. This study aimed to investigate the perspective of professionals concerning a palliative (farewell) culture in SHA. METHODS: In this study two group discussions were conducted with nurses and nursing assistants working in SHA. Data were analyzed using the documentary method, with the aim of working out the professional orientation framework concerning a collective palliative culture. RESULTS: Nurses enable a palliative (farewell) culture. This leads to the fact that hospice services are not used in these SHA. The distance to relatives as well as a short dying process or incomplete dying support can make a successful palliative culture difficult. Depending on the conscious assumption of responsibility for a palliative culture in the nursing concept of SHA, death and dying are discussed at an early stage with the relatives and care-dependent people. DISCUSSION: The constantly progressing palliative culture in SHA is based on nurses' experiences, general practitioners (GP) and relatives. The family carers' role is ambiguous. If they do what they are supposed to do from the professional nurses' point of view and are closely connected to the nurses, they are viewed positively and as enablers of a palliative culture. If family carers' responsibilities are not communicated and they are not in close contact with professional nurses, they are viewed as opponents of a palliative culture. The GPs are seen as enablers of a palliative culture in both discussions. A timely discussion on what might happen in the end of life phase, formalized or not, helps all involved groups to be prepared.

[The cultural intermediary model, a source of alternative views on nursing activity in palliative care]. / Le modèle d'intermédiaire culturel, source d'autres regards sur l'activité infirmière en soins palliatifs.

With the aim of describing the activities of nurses in mobile home palliative care teams in the Brussels Region, the study Nursing practices in palliative care in Brussels outpatient mobile teams took the cultural intermediary model as its theoretical framework. This model is based on in-depth research into the history of the nursing discipline. This article provides an overview of this European conceptual model, its integration into a descriptive study, and highlights some of its contributions.

The role of specialist palliative care in individuals "living beyond cancer": a narrative review of the literature.

PURPOSE: Many patients living beyond cancer experience significant unmet needs, although few of these patients are currently reviewed by specialist palliative care teams (SPCTs). The aim of this narrative review was to explore the current and potential role of SPCTs in this cohort of patients. METHODS: A search strategy was developed for Medline, and adapted for Embase, CINAHL, and PsycInfo. Additionally, websites of leading oncology, cancer survivorship, and specialist palliative care organisations were examined. The focus of the search was on individuals living beyond cancer rather than other groups of cancer survivors. RESULTS: 111 articles were retrieved from the search for full text review, and 101 other sources of information were identified after hand searching the reference lists of the full text articles, and the aforesaid websites. The themes of the review encompass the definition of palliative care/specialist palliative care, current models of specialist palliative care, core activities of SPCTs, relevant expertise of SPCTs, and potential barriers to change in relation to extending their support and expertise to individuals living beyond cancer. The review identified a paucity of evidence to support the role of SPCTs in the management of patients living beyond cancer. CONCLUSIONS: Individuals living beyond cancer have many unmet needs, and specific services are required to manage these problems. Currently, there is limited evidence to support the role of specialist palliative care teams in the management of this cohort of people, and several potential barriers to greater involvement, including limited resources, and lack of relevant expertise.

[Development plan for palliative care and end-of-life support 2021-2024]. / Plan de développement des soins palliatifs et accompagnement de la fin de vie 2021-2024.

DEVELOPMENT PLAN FOR PALLIATIVE CARE AND END-OF-LIFE SUPPORT 2021-2024. The 5th national Plan on palliative and end-of-life care aims to ensure universal access to palliative care in France. It is based on three axes: communication on palliative care and appropriation of end-of-life rights by each citizen and by each health professional; training professionals and supporting research; deployment of local care, strengthening of coordination, early integration of palliative care.

PLAN DE DÉVELOPPEMENT DES SOINS PALLIATIFS ET ACCOMPAGNEMENT DE LA FIN DE VIE 2021-2024. Le 5e Plan national sur les soins palliatifs et la fin de vie a pour objectif d'assurer un accès universel aux soins palliatifs en France. Il se décline autour de trois axes : la communication sur les soins palliatifs et l'appropriation des droits de la fin de vie par chaque citoyen et par chaque professionnel de santé ; la formation des professionnels et le soutien de la recherche ; le déploiement des prises en charge de proximité, le renforcement des coordinations, l'intégration précoce des soins palliatifs.

[State of palliative care in France]. / État des lieux des soins palliatifs en France.

STATE OF PALLIATIVE CARE IN France. France is facing an epidemiological context marked by an increase in the number of elderly and very elderly people (often polypathological and dependent), and in the number of people suffering from serious or degenerative chronic illnesses. Considering people's needs and providing them with support in their last period of life has become more time-consuming, requiring appropriate care. The end-of-life trajectories of French people are heterogeneous, with a diversity of palliative and end-of-life trajectories coexisting, depending on their pathologies, personal situations, and frailties. This observation, combined with a legislative framework that has been evolving since the 90s to strengthen the rights of patients and their families, has prompted public authorities to reform end-of-life care provision, so that it is effective wherever the end of life takes place, and in line with societal expectations. A palliative care network is currently being set up at regional level and will be gradually extended to each region. Based on currently available data, the Centre National des Soins Palliatifs et de la Fin de Vie (National Center for Palliative and End-of-Life Care) has published an atlas to provide a better understanding of the evolution of end-of-life care provision and activity in France, the key figures of which are summarized in this article. This situation remains incomplete due to the lack of identification of trained professionals and the care procedures performed, especially at home. The government's current ambition to strengthen dedicated territorial organizations based on personalized care and support plans is a response to the present and future challenges of organizing palliative and end-oflife care in France.

ÉTAT DES LIEUX DES SOINS PALLIATIFS EN France. La France fait face à un contexte épidémiologique marqué par une augmentation du nombre de personnes âgées, voire très âgées (souvent polypathologiques et dépendantes), et de celui de personnes atteintes d'une maladie chronique grave ou dégénérative. La prise en compte des besoins des personnes et leur accompagnement pendant leur dernière période de vie devenue plus longue nécessite une prise en charge adaptée. Les parcours de fin de vie des Français sont hétérogènes, faisant coexister une diversité de trajectoires palliatives et de fin de vie en fonction de leurs pathologies, leur situation personnelle et leurs fragilités. Ce constat ainsi qu'un cadre législatif évoluant depuis les années 1990 vers un renforcement des droits des personnes malades et de leurs proches engagent les pouvoirs publics en direction d'une réforme de l'offre en soins de la fin de vie afin qu'elle soit effective quel que soit le lieu et en adéquation avec les attentes sociétales. Une filière de soins palliatifs est en cours de structuration au niveau régional et est amenée à se décliner de manière graduée à l'échelle de chaque territoire. Sur la base des données actuellement disponibles, le Centre national des soins palliatifs et de la fin de vie publie un atlas pour mieux comprendre l'évolution de l'offre et de l'activité en matière d'accompagnement de la fin de vie en France, dont une synthèse des chiffres clés est proposée dans cet article. Cet état des lieux reste incomplet par manque d'identification des professionnels formés ainsi que des actes de soins réalisés, et ceci est d'autant plus vrai au domicile. L'ambition gouvernementale actuelle d'aller notamment vers un renforcement des organisations territoriales dédiées qui s'appuient sur des plans personnalisés de soins d'accompagnement constitue une réponse aux défis d'aujourd'hui et de demain pour l'organisation des soins palliatifs et de la fin de vie en France.

Interprofessional collaboration in palliative dementia care.

Interprofessional collaboration (IPC) is essential for high-quality palliative care (PC) for persons with dementia. The aim of this scoping review was to identify IPC approaches in palliative dementia care and explore the elements constituting these approaches. We performed a search in PubMed, CINAHL, and PsychINFO using the Joanna Briggs Institute Reviewers' manual and PRISMA guidelines, and conducted content analysis of the included articles. In total, 28 articles were included, which described 16 IPC approaches in palliative dementia care. The content analysis revealed three overall elements of these approaches: 1) collaborative themes, 2) collaborative processes, and 3) resources facilitating collaboration. Frequently reported collaborative themes embraced pain management and providing care in the dying phase. These themes were addressed through intertwined collaborative processes including communication, coordination, assessing and monitoring, and reflecting and evaluating. To ensure optimal IPC in palliative dementia care, various resources were required, such as PC knowledge, skills to manage symptoms, skills to communicate with collaborators, and a facilitating environment. In conclusion, the identified IPC approaches in palliative dementia care involve diverse collaborating professionals who mainly manage symptoms, prepare for the dying phase and require material and immaterial resources to enable optimal IPC in palliative dementia care.

Characteristics of timely integration of palliative care into oncology hospital care for patients with incurable cancer: results of a Delphi Study.

PURPOSE: To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC. METHODS: A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%. RESULTS: A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient's request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3 months should be offered a consultation (71%). CONCLUSION: The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death.

Psychosocial Distress Screening Among Interprofessional Palliative Care Teams: A Narrative Review.

With increased need for palliative care and limited staffing resources, non-social workers are increasingly responsible for screening for urgent psychosocial distress. The National Consensus Project guidelines call for all palliative care team members to be competent in screening across domains. Yet, in contrast to an abundance of evidence-informed tools for palliative social work assessments, standardization for interprofessional psychosocial screening is lacking. This lack of standardized practice may lead to harmful disparities in care delivery. The purpose of this narrative review is to examine current literature on evidence-informed practices for psychosocial screening within palliative care. Google Scholar, a university Summon library search engine, and prominent palliative care journals were searched using the same phrases to locate articles for inclusion. Each article was reviewed and synthesized across common themes. Although an abundance of validated screening tools exists for outpatient oncology-specific settings, there is minimal guidance on psychosocial screening tools intended for specialty palliative care. The most oft-cited tools have been met with concern for validity across diverse palliative care populations and settings. Additional research is needed to operationalize and measure brief psychosocial screening tools that can be validated for use by interprofessional palliative care teams, a stepping-stone for increased equity in palliative care practice.

The role of pharmacist in community palliative care-a scoping review.

OBJECTIVES: Dynamic and adaptive services that provide timely access to care are pivotal to ensuring patients with palliative needs experience high-quality care. Patients who have palliative care needs may require symptomatic relief with medicines and, therefore, may engage with community pharmacists frequently. However, there is limited evidence for pharmacists' involvement in community palliative care models. Therefore, a scoping review was conducted to identify pharmacists' role in community palliative care. METHODS: A systematic search strategy was implemented across PubMed, PsychINFO, CINAHL, and Embase databases. Articles were screened by abstract and full text against inclusion and exclusion criteria. KEY FINDINGS: Five articles (two from Australia, two from England, and one from Scotland) met the inclusion criteria and described interventions involving pharmacists in community palliative care. This review has identified that the inclusion of trained pharmacists in community palliative care teams can improve the quality of care provided for patients with palliative needs. Pharmacists are able to undertake medication reviews and provide education to patients and other healthcare professionals on the quality use of palliative care medicines. Additionally, the underutilization of community pharmacists in palliative care, the need for further training of pharmacists, and improved community pharmacy access to patient information to deliver community palliative care were identified. CONCLUSION: Pharmacists can play a vital role in community palliative care to enhance the quality of life of patients. There is a need for greater pharmacist education/training, improved interprofessional communication, improved access to patient information and sustainable funding to strengthen community-based palliative care.

Using the Tasmanian Palliative and End of Life Care Policy Framework (2022) to assess service delivery in a rural general practice.

AIMS: This commentary uses the Tasmanian Palliative and End of Life Care Policy Framework (2022; the TPE Framework) to reflect upon palliative care services delivered by a rural Tasmanian general practice. CONTEXT: Rural populations have challenges in accessing many healthcare services, including palliative care. General practitioners (GPs) and other primary healthcare workers are frequently relied upon to deliver palliative care in rural Australia. Palliative care is often needed before the end-of-life phase and patients prefer this to be delivered in the community or at home. GPs face challenges and barriers in continuing to deliver home-based palliative care services. APPROACH: All Medical Benefit Scheme billings for after-hours or home-based palliative care provided by the practice, between September 2021 and August 2022, were identified and patient demographic and clinical details collated. To further understand this data, nine GPs were surveyed to explore their attitudes to provision of palliative care service to the local rural communities they serve. These data highlighted several priority areas of the TPE Framework. The TPE Framework is used here to add to the shared understanding of palliative care service delivery in a rural community, and to see if GP's responses align with the priorities of the TPE Framework. Of the 258 after-hours and home-visits delivered over a 12-month period, almost 58% (n = 150) were for palliative care. Patients receiving palliative care were generally older than non-palliative patients visited (79.9 years vs. 72.0 years respectively; p = 0.004). Patients not at imminent risk of death (64.0%) were more frequently recipients of home-visits. Of the nine GPs responding to the survey, most intended to continue home visits for palliative patients. Disincentives to providing palliative care during home visits included a lack of time during the day (or after hours), low levels of interdisciplinary coordination or role-definition, and inadequate remuneration. CONCLUSION: Existing frameworks can be used as an implementation and evaluation guide to help understand local palliative care services. Using a Framework, a rural general practice in Tasmania reflected on their provision of palliative care services. Providing holistic palliative care services from a rural general practice is desirable and achievable with a coordinated, team-based approach. Access to and integration with specialist services remains a key component of community-based palliative care pathways.

Improving supportive, palliative and end of life care for teenagers and young adults with cancer in adult haematology services.

PURPOSE OF REVIEW: Adolescents with haematological malignancies within adult services, in the UK from 16 years old, have unique needs and require developmentally targeted services and approaches to care delivery. High-risk intensive treatments are common for this cohort and a better understanding of what individualised supportive and palliative care means in this context is required. RECENT FINDINGS: Being known and understood as an emerging adult, with particular recognition of developmental stage, is an essential component of quality measures and underpins the adolescent, and caregiver, experience when faced with an uncertain or poor cancer prognosis (UPCP). Healthcare professionals (HCPs) can experience increased emotional labour and feelings of professional inadequacy when caring for adolescents with UPCP. Therapeutic alliance improves HCPs understanding of optimum individualised care by improving communication and supported decision making. Access to training and support for HCPs is required to address the emotional impact of therapeutic alliance with teenage/adolescent and young adults (T/AYAs) with advanced cancer. SUMMARY: Investment in therapeutic alliance, alongside robust support mechanisms and targeted training, can improve the skills, confidence and wellbeing for HCPs, and can also ensure optimum individualised care for T/AYAs with UPCP. Evidence for optimum care for adolescents with advanced cancer is relatively scarce, especially for younger T/AYAs (16-24) in the UK who sit within adult services. Further evaluation of the impact of current UK expertise, services and programs are needed to inform future development.

Community Preferences for the Care of Older People at the End of Life: How Important is the Disease Context?

BACKGROUND: Population preferences for care at the end of life can inform palliative care policy and direction. Research investigating preferences for care at the end of life has focused predominantly on the context of advanced cancer, with relatively little attention to other life-limiting illnesses that are common causes of death. OBJECTIVES: We aimed to investigate preferences for the care of older people at the end of life in three different disease contexts. The purpose was to understand if population preferences for care in the last 3 weeks of life would differ for patients dying from cancer, heart failure or dementia. METHODS: Three discrete choice experiments were conducted in Australia with a general population sample using similar methods but different end-of-life disease contexts. Some attributes were common across the three experiments and others differed to accommodate the specific disease context. Each survey was completed by a different panel sample aged ≥45 years (cancer, n = 1548; dementia, n = 1549; heart failure, n = 1003). Analysis was by separate mixed logit models. RESULTS: The most important attributes across all three surveys were costs to the patient and family, patient symptoms and informal carer stress. The probability of choosing an alternative was lowest (0.18-0.29) when any one of these attributes was at the least favourable level, holding other attributes constant across alternatives. The cancer survey explored symptoms more specifically and found patient anxiety with a higher relative importance score than the symptom attribute of pain. Dementia was the only context where most respondents preferred to not have a medical intervention to prolong life; the probability of choosing an alternative with a feeding tube was 0.40 (95% confidence interval 0.36-0.43). CONCLUSIONS: This study suggests a need for affordable services that focus on improving patient and carer well-being irrespective of the location of care, and this message is consistent across different disease contexts, including cancer, heart failure and dementia. It also suggests some different considerations in the context of people dying from dementia where medical intervention to prolong life was less desirable.

Challenges of palliative care identified by stakeholders in resource-limited settings: A multi-regional study in Kazakhstan.

INTRODUCTION: In Kazakhstan, a country of 19 million residents, more than 100,000 patients need palliative care. Since at least one family member is usually involved in the care of a terminal patient, more than 200,000 people would benefit from high-quality palliative care services in the country. However, with only 45 physicians and 101 nurses attending to 1925 palliative beds, Kazakhstan seeks to develop palliative services that meet the national needs in resource-limited settings and international standards. The objectives of this study are to explore the challenges faced by stakeholders involved in palliative care in Kazakhstan and to subsequently provide recommendations that can guide policymakers towards further developing palliative care services in the country. METHODS: This cross-sectional descriptive study collected narrative data with in-depth interviews from n= 29 palliative stakeholders (family caregivers n= 12, healthcare professionals =12, administrators n= 5) across five regions of Kazakhstan. Verbatim transcripts of interviews were analyzed using content analysis to identify needs and challenges of stakeholders involved in palliative care. RESULTS: Our analysis identified seven main challenges of palliative care stakeholders: high out-of-pocket expenditures; lack of mobile palliative care services for home-based care; severe shortages of opioids to prevent pain suffering; poor formal palliative care education; absence of practical skills training for family caregivers; lack of awareness about palliative care in the society, and lack of state support. CONCLUSION: Implementation of national palliative care strategies and policies require a large-scale coordinated involvement of all stakeholders. Our recommendations are based on the idea that coordinated, targeted, and tailored stakeholder engagement is preferred to a one-size-fits-all strategy.