Patients' experiences with shared decision-making in home-based palliative care - navigation through major life decisions.

BACKGROUND: This study addresses the issue of shared decision-making (SDM) in a Norwegian home-based palliative care setting. The significance of patient involvement in SDM is widely acknowledged, and many patients want to participate in decisions about care and treatment. Yet, it remains a need for more knowledge regarding the initiators and approaches of SDM in the context of home-based palliative care, particularly from the patients' perspective. The aim of this study is to understand patients' experiences and preferences for SDM in home-based palliative care, seeking to enhance the quality of care and direct the planning of healthcare services. METHODS: We used a qualitative explorative design. A hermeneutic approach was employed, and data was collected through in-dept interviews with 13 patients. RESULTS: The study uncovered an overarching theme of "Navigating to reach own decisions," comprising three sub-themes: "To be trapped in life without decisions to act on"; "To surrender to others and let others deal with decisions"; "To continue to be oneself without focusing on disease and decision-making". CONCLUSIONS: The findings underscore the need for flexible, person-centered approaches in SDM, tailored to the fluctuating health literacy and changing preferences of patients in palliative care settings. Our study contributes to the understanding of SDM in palliative care by highlighting how patients navigate the balance between autonomy and reliance on HCPs. Future research should explore how healthcare systems, including HCPs' roles in the system, can adapt to the patients' dynamic needs, to ensuring that SDM will remain a supportive and empowering process for patients at all stages of their disease.

Reflection on the impact of the COVID-19 pandemic on a community specialist palliative care nurse team.

BACKGROUND: A global COVID-19 pandemic was declared by the World Health Organization in March 2020. AIM: To explore COVID-19's impact on one specialist community palliative care nurse (SCPCN) team 8 months after the first COVID-19 wave in the UK. METHOD: The Gibbs Reflective Cycle was used. FINDINGS: This SCPCN team described the COVID-19 pandemic as the most difficult and challenging time experienced at work, due to the increased workload and having to provide unsustainable levels of support for patients and their families. CONCLUSION: Despite the COVID-19 pandemic's significant demands on community palliative care, the SCPCN team was able to adapt accordingly. This resulted in an increasingly collaborative, reflexive, responsive, skilled and resilient team, proud of the personalised support offered to patients, their families and to other services.

An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing.

BACKGROUND: Research exploring nurse-parent relationships in children's hospices is rare. AIM: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. METHODS: A purposive sample of six children's nurses, from hospices across England, recorded audio diaries and participated in telephone interviews. Narratives were thematically analysed. FINDINGS: Three overarching, cross-cutting themes were identified-purposeful positioning; balancing personability and professionalism; coping with and counterbalancing emotional labour. All themes were indicative of and/or built upon emotional intelligence constructs, such as self-awareness, self-regulation, appropriate (managed) empathy, social skills and intrinsic motivation. Innate features of children's hospice work were important for perpetuating intrinsic motivation and satisfaction. CONCLUSION: This study provided an insight into the management of emotional labour and professional integrity by experienced children's hospice nurses. The identification of emotional intelligence skills merits further exploration in this environment, as well as other children's palliative care settings.

Physical activity and life-limiting conditions.

BACKGROUND: Physical activity can assist people with life-limiting conditions to maintain their wellbeing and quality of life. AIMS: To explore the views of clinical nurse specialists (CNS) working in community palliative care towards the role of physical activity for people with life-limiting conditions, and to explore the physical activity needs of patients with life-limiting conditions identified by CNSs. METHODS: A purposive sample of CNSs working in community palliative care received an anonymous online survey via email. FINDINGS: The response rate was 66% (n=20). Most respondents were practicing for over 20 years (60%, n=12). All respondents (100%, n=20) reported they would like further information on the role of exercise for palliative populations. The main perceived benefit of physical activity was to improve quality of life (95%, n=18). A lack of physical activity guidelines for people living with life-limiting conditions was the most commonly reported barrier to engaging in discussions around physical activity (74%, n=14). CONCLUSION: Further education opportunities on the role of physical activity for patients living with life-limiting conditions are needed.

Views of admitted palliative care patients and their clinicians on corneal donation discussions: a qualitative content analysis of semi-structured interviews.

BACKGROUND: There is a severe shortage of corneas for donation, globally, for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aim of the study was to understand clinician and patient perceptions of corneal donations and discussion of donation in palliative care units. METHODS: A qualitative design was utilised with data collected through semi-structured interviews and analysed using qualitative content analysis. A total of 46 interviews were undertaken involving inpatient palliative care unit patients (19) and clinicians (27) in three major inpatient palliative care units in South Australia. RESULTS: Very few patient participants reported being asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not raise the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur. CONCLUSIONS: Findings suggest that patients are receptive to discussing corneal donations, but clinicians are not initiating these. This is a missed opportunity for donors and potential recipients. We recommend that clinicians routinely discuss eye donation as part of palliative care.

Perspectives from patients with chronic lung disease on a telehealth-facilitated integrated palliative care model: a qualitative content analysis study.

BACKGROUND: Chronic lung disease affects nearly 37 million Americans and often results in significant quality of life impairment and healthcare burden. Despite guidelines calling for palliative care (PC) integration into pulmonary care as a vital part of chronic lung disease management, existing PC models have limited access and lack scalability. Use of telehealth to provide PC offers a potential solution to these barriers. This study explored perceptions of patients with chronic lung disease regarding a telehealth integrated palliative care (TIPC) model, with plans to use findings to inform development of an intervention protocol for future testing. METHODS: For this qualitative study, we conducted semi-structured interviews between June 2021- December 2021 with patients with advanced chronic lung disease. Interviews explored experiences with chronic lung disease, understanding of PC, and perceived acceptability of the proposed model along with anticipated facilitators and barriers of the TIPC model. We analyzed findings with a content analysis approach. RESULTS: We completed 20 interviews, with two that included both a patient and caregiver together due to patient preference. Perceptions were primarily related to three categories: burden of chronic lung disease, pre-conceived understanding of PC, and perspective on the proposed TIPC model. Analysis revealed a high level of disease burden related to chronic lung disease and its impact on day-to-day functioning. Although PC was not well understood, the TIPC model using a shared care planning approach via telehealth was seen by most as an acceptable addition to their chronic lung disease care. CONCLUSIONS: These findings emphasize the need for a patient-centered, shared care planning approach in chronic lung disease. The TIPC model may be one option that may be acceptable to individuals with chronic lung disease. Future work includes using findings to refine our TIPC model and conducting pilot testing to assess acceptability and utility of the model.

The suffering is expensive: comparison of therapeutic costs between palliative care and dysthanasia patients / El sufrimiento es caro: comparación de costos terapéuticos entre pacientes en cuidados paliativos y distanasia

Objectives: Several studies highlight benefits of palliative care for patients with life-threatening illnesses, especially in terms of pain control and improving life quality. However, there is still research gap, particularly in the Brazilian context, regarding its ability to reduce costs associated with unnecessary invasive tests and procedures often invested in dysthanasia patients, thereby relieving the burden on the healthcare system. Given this scenario, the objective was to determine whether there is a significant difference in healthcare costs between cancer patients receiving palliative care and those in dysthanasia. Method: Documentary research, analyzing 94 medical records of patients who died from cancer in a hospital, divided into two groups: 47 in palliative care and 47 in dysthanasia. The groups had their average costs compared by surveying all tests and procedures recorded in the last 30 days of each patient’s life, with values scored based on the price table of the Unified Health System (Sistema Único de Saúde). Results: Patients receiving curative care in dysthanasia incurred an average cost of 2,316.92 Brazilian Reais (SD = 3,146.60) for tests and procedures in the last 30 days of life. Patients in palliative care had an average cost of 945.40 Brazilian Reais (SD = 2,508.01). There is a statistically significant difference in the invested values between patients in palliative care and those in dysthanasia (U = 620.00; Z = -4.334; p < 0.001). Conclusions: Implementing palliative care can be considered an effective strategy for reducing hospital costs, leading to significant savings within the healthcare system.AU)

Objetivo: Varios estudios destacan los beneficios de los cuidados paliativos para pacientes con enfermedades potencialmente mortales, especialmente en términos de control del dolor y mejora de la calidad de vida. Sin embargo, todavía existe un vacío de investigación, particularmente en el contexto brasileño, con respecto a su capacidad para reducir los costos asociados con pruebas y procedimientos invasivos innecesarios que a menudo se invierten en pacientes con distanasia, aliviando así la carga sobre el sistema de salud. Ante este escenario, el objetivo fue determinar si existe una diferencia significativa en los costos de atención médica entre los pacientes con cáncer que reciben cuidados paliativos y aquellos en distanasia. Método: Investigación documental, analizando 94 historias clínicas de pacientes que fallecieron por cáncer en un hospital, divididas en dos grupos: 47 en cuidados paliativos y 47 en distanasia. Los grupos compararon sus costos promedio encuestando todas las pruebas y procedimientos registrados en los últimos 30 días de vida de cada paciente, con valores puntuados con base en la tabla de precios del Sistema Único de Salud. Resultados: Los pacientes que recibieron atención curativa en distanasia incurrieron en un costo promedio de 2,316,92 reales brasileños (SD=3.146,60) por pruebas y procedimientos en los últimos 30 días de vida. Los pacientes en cuidados paliativos tuvieron un costo promedio de 945,40 reales brasileños (DE=2,508,01). Existe una diferencia estadísticamente significativa en los valores invertidos entre pacientes en cuidados paliativos y aquellos en distanasia (U=620,00; Z=-4,334; p<0,001). Conclusiones: La implementación de cuidados paliativos puede considerarse una estrategia eficaz.(AU)

Primary Palliative Care in Urology: Quality Improvement Summit 2021-2022.

INTRODUCTION: The AUA convened a 2021-2022 Quality Improvement Summit to bring together interdisciplinary providers to inform the current state and to discuss potential strategies for integrating primary palliative care into urology practice. We hypothesized that the Summit findings would inform a scalable primary palliative care model for urology. METHODS: The 3-part summit reached a total of 160 interdisciplinary health care professionals. Webinar 1, "Building a Primary Palliative Care Model for Urology," focused on a urologist's role in palliative care. Webinar 2, "Perspectives on Increasing the Use of Palliative Care in Advanced Urologic Disease," addressed barriers to possible implementation of a primary palliative care model. The in-person Summit, "Laying the Foundation for Primary Palliative Care in Urology," focused on operationalization of primary palliative care, clinical innovations needed, and relevant metrics. RESULTS: Participants agreed that palliative care is needed early in the disease course for patients with advanced disease, including those with benign and malignant conditions. The group agreed about the important domains that should be addressed as well as the interdisciplinary providers who are best suited to address each domain. There was consensus that a primary "quarterback" was needed, encapsulated in a conceptual model-UroPal-with a urologist at the hub of care. CONCLUSIONS: The Summit provides the field of urology with a framework and specific steps that can be taken to move urology-palliative care integration forward. Urologists are uniquely positioned to provide primary palliative care for their many patients with serious illness, both in the surgical and chronic care contexts.

The roles of French community pharmacists in palliative home care.

BACKGROUND: The World Health Organization identifies pharmacists as a key resource in palliative care. However, the roles of these professionals in end-of-life care at home remain poorly understood, and community pharmacists themselves sometimes struggle to recognize their true role in this care. The aim of our study was to analyze community pharmacists' representations of their roles in palliative care at home in France. METHODS: The methodology was qualitative and based on semi-structured interviews with community pharmacists (n = 26). The analysis of the interviews was carried out using a qualitative content approach with thematic and lexical analysis. RESULTS: Three main elements of the community pharmacist's role were identified: drug expertise, care management, and psychosocial support for patients and their families. CONCLUSIONS: This study highlights a wide variety of roles adopted by French community pharmacists in palliative care at home. Some of these roles, which are in line with WHO recommendations on palliative care, have been little described to date. These roles of community pharmacists in home-based palliative care could be better recognized, and the players better integrated into end-of-life care systems at home, in order to improve such care. TRIAL REGISTRATION: This work was carried out within the framework of a call for projects from the Fondation de France and has received the approval of the University Clermont Auvergne Research Ethics Committee (no. IRB00011540-2021-60).