Background:The growing number of patients diagnosed with advanced cancer increases the pressure on health systems, especially in lower-middle-income countries. Telemedicine palliative care consultation is innovative in providing quality cancer care while reducing costs. However, there is a lack of randomized controlled studies that evaluate the effects of digital consultations in the palliative treatment of cancer patients. This study aims to investigate the efficacy of telemedicine consultation in outpatient palliative care settings. Methods/Design:During an 18-month recruitment period, participants recently diagnosed with advanced cancer who are not already receiving palliative care are invited to participate in a randomized controlled trial. Eligible participants are randomized to the intervention group (telemedicine) or the control group (face-to-face) consultations. Patients have monthly scheduled consultations (three such consultations), and unscheduled consultations as needed, provided through telemedicine or face-to-face visits. The primary outcomes are patients' quality of life assessed monthly using the EORTC-QLQ-C30 Questionnaire, changes in self-reported symptom control measured at every visit through the mean changes in distress score on the IPOS Questionnaire, and patients' satisfaction assessed monthly using the FAMCARE P16 Questionnaire. Secondary outcomes are eHealth Literacy, the domain of intervention, number of patients satisfied with physician communication, patients' experiences with the care, number of emergency room visits, number of unscheduled visits, adherence to intervention, changes in medication adherence, number of completed telemedicine scheduled visits, and physician's ability to evaluate a patient through telemedicine. Discussion:This is one of the first randomized controlled trials investigating virtual palliative care. Our data will determine whether telemedicine is appropriate for outpatient palliative care. Trial registration:ClinicalTrials.gov Identifier: NCT06538350.
Background Palliative sedation is a last-resort intervention designed to alleviate refractory suffering at the end of life. Healthcare professionals frequently encounter ethically complex situations when deciding whether and how to apply palliative sedation. Moral case deliberation supports healthcare professionals in discussing ethical issues in a structured way. Objectives To describe healthcare professionals’ perceptions of ethical issues about the practice of palliative sedation. Design This qualitative study was designed as part of the five-year Palliative Sedation project conducted in eight European countries (Belgium, Germany, Hungary, Italy, the Netherlands, Romania, Spain, and the United Kingdom). Methods Thirty-two moral case deliberation sessions were held in 16 clinical sites with the participation of 231 healthcare professionals. During the sessions, healthcare professionals discussed relevant clinical cases where ethical questions arose regarding the practice of palliative sedation for the management of refractory symptoms. The sessions were audio-recorded and transcribed verbatim. Framework analysis was performed on the data. Results Ethical issues related to palliative sedation were centred on patient autonomy as a fundamental principle. Healthcare professionals identified several ethical concerns about mental capacity, deferring autonomy, and competing ethical principles. Most of the ethical issues arose in the context of decision-making, and participants often experienced moral distress in these challenging situations. Healthcare professionals agreed that shared decision-making represented the optimal approach. Conclusion Healthcare professionals have varying levels of understanding and address ethical issues differently. This study showed that palliative sedation is an ethically dense practice that requires moving beyond individualistic models of autonomy toward a more relational approach. Shared decision-making through timely and open communication enhances patient autonomy in the context of palliative sedation.
Background Palliative care in combination with or after oncological treatment has been found to increase the quality of life and quality of care for patients with advanced cancer. This often means change in goals of care, sometimes along with a change of healthcare provider or place of care. These types of changes are frequently referred to as care transitions. Ensuring continuity of care during these types of transitions is crucial, yet previous research has shown that essential information is not always effectively communicated. Sometimes, this leads to avoidable hospital readmissions, which may cause distress and decreases the quality of life for patients in the last phase of life. This study aims to evaluate the effectiveness of a transitional palliative care intervention in reducing hospital readmissions. Methods This study will employ a stepped wedge cluster randomized controlled trial (RCT) design conducted across 14 settings in seven European countries. (Germany, Hungary, the Netherlands, Poland, Portugal, Romania and the United Kingdom). Over a 25 months recruitment-period, 1,050 patients with advanced cancer and if possible, a relative will be enrolled. Patients will be followed for 90 days after inclusion. The primary outcome is the number of hospital readmissions, with secondary outcomes being quality of life and quality of care. Once data collection is complete, a multilevel regression analysis will compare outcomes between the control and intervention groups within each setting, accounting for the hierarchical structure of the data. Discussion The study results will determine the effectiveness of the Pal-Cycles intervention in decreasing the number of readmissions to hospital, and increasing the quality of life and the quality of care for patients with advanced cancer. Trial Registration number: ClinicalTrials.gov ID: NCT06259136, 2025-07-28, Study Details | NCT06259136 | Palliative Care Yields Cancer Wellbeing Support | ClinicalTrials.gov
BACKGROUND:International adaptation of healthcare interventions requires sensitivity to local contexts, especially in palliative care, where healthcare systems and cultural expectations about end of life differ widely. Pal-Cycles is an intervention that aims to improve transitions in care for patients with advanced cancer. This intervention was adapted for implementation in a stepped wedge trial across seven European countries (Germany, Hungary, the Netherlands, Poland, Portugal, Romania and the UK). This paper aims to illustrate the process of adapting a palliative care intervention (Pal-Cycles) to meet the needs of those using healthcare settings across seven European countries. METHODS:Adapted nominal group techniques (a structured group method that supports idea generation, discussion, and prioritisation) were used, involving both in-country and cross-country adaptation meetings focused on the five key components of the original intervention design, to ensure cultural sensitivity and best fit All countries established a group of clinicians and all except two countries (Portugal and Hungary) involved groups of patients and families. The adaptation process occurred in a series of 5 meetings, which were mostly held online to accommodate participants' schedules. RESULTS:A total of 36 clinicians, 14 patients or family members, and 16 facilitators participated in the adaptation process over a four-month period. Structured guidance and iterative consultation meetings ensured that the final intervention was both standardised and adaptable to each country's healthcare setting. We produced a standardised intervention manual based on a theory of change model, ensuring consistency across countries while allowing for contextual flexibility. CONCLUSIONS:This paper provides guidance for future cross-cultural adaptation of palliative care interventions, illustrating the value of detailed methodological planning, structured guidance, and multi-stakeholder engagement in the adaptation process. TRIAL REGISTRATION:ClinicalTrials.gov NCT06259136, registered on 6 February 2024.
Neuropsychiatric symptoms such as delirium, anxiety, depression, and agitation are prevalent among cancer patients at the end of life, significantly impacting quality of life for both patients and caregivers. Despite their clinical importance, these symptoms are often underrecognised and undertreated. This study aims to assess the frequency of neuropsychiatric symptoms and use of psychotropics in the last week of life in patients with advanced cancer. We conducted a retrospective review of medical records from adult cancer patients who died between January 1, 2024 and September 31. 2024, at Hospice Casa Sperantei and County Emergency Hospital of Brasov, Romania. Data collected included demographic information, documented neuropsychiatric symptoms, and psychotropic prescriptions in the last week of life. Descriptive statistics and subgroup analyses were used to assess symptom prevalence and prescribing trends. Among 305 patients included in the analysis, 70 (23%) had delirium, 55 (18%) had confusion, and 50 (16.4%) had insomnia. The main risk factors for delirium were nausea and constipation the most used psychotropics in the last week of life were Haloperidol. Midazolam, and Lorazepam, but the patterns of prescribing varied by care setting. These findings highlight the need for improved recognition and management of psychiatric symptoms in palliative care, as well as the development of evidence-based prescribing guidelines to support appropriate and effective psychotropic use in this vulnerable population.
BACKGROUND:The patterns of care for patients with advanced cancer in the last week of life are critical for ensuring quality and dignity during a vulnerable time. As patients approach end of life, the focus typically shifts from aggressive treatment to palliative care, emphasizing comfort and symptom management. The term "non-comfortoriented care" describes a set of medical interventions and treatments that prioritize prolonging life. This can lead to increased physical discomfort, emotional burden, or reduced quality of life. AREAS OF UNCERTAINTY:For those who die in a medical setting, end-of-life care practices vary greatly and the care can be either comfort-oriented or noncomfort-oriented. There is a need for a clear overview of patterns for end-of-life care for patients with advanced cancer. DATA SOURCES:Based on Whittemore's integrative review method, comprehensive searches were conducted in PubMed, Science Direct, Scopus, and Google Scholar databases. Population/Patient, Exposure, and Outcome format was used to formulate a research review question. THERAPEUTICS ADVANCES:Twenty-four articles were included. The key components of the patterns of care implemented during the last week of life are settings, palliative care involvement, intensity of therapeutics interventions, duration, and planning in advance. The only setting where solely comfort-oriented care was delivered was the community. In hospital settings, both comfort and noncomfort-oriented care were offered. Palliative care involvement was associated with comfort-oriented care, early recognition of dying (median 6 days), medication rationalizing, and implementation of care pathways. Noncomfort-oriented care patterns occurred in emergency departments, oncology, and general wards in acute hospitals with late recognition of dying (median 2 days) and use of inappropriate therapeutics interventions. CONCLUSION:To deliver the best care in the last week of life, new strategies are necessary to guide the clinical practices and to ensure patient-centered care.
BACKGROUND:Telemedicine (TM) was studied, particularly during the COVID-19 pandemic, to ascertain its utility in delivering remote medical services. STUDY QUESTION:What palliative care (PC) interventions can be provided through TM consultations compared with face-to-face (FF) consultations? What is their efficacy in reducing the intensity of suffering in the physical, emotional, social, and spiritual domains? What is the level of satisfaction with the care given? STUDY DESIGN:Randomized controlled trial with 2 arms: TM consultations using Zoom and WhatsApp secure platforms (Intervention group) and FF consultations (Control group). Participants received 8 scheduled weekly consultations and on-demand consultations. MEASURES AND OUTCOMES:The patients completed weekly Edmonton Symptom Assessment System, Problems and Needs in Palliative Care Short Form, and Patient Satisfaction Questionnaire Short Form monthly questionnaires. Statistical analyses were performed using GraphPad Prism 10.0.2. RESULTS:Between July 2023 and January 2024, 26 patients with newly diagnosed advanced cancer were randomized, 23 completed the study and 3 died in the TM arm (attrition rate 11.53%). Enrolled participants had predominantly advanced head and neck cancer (30.76%) and digestive tract cancer (23.07%). Patients in the TM arm had a lower performance status compared with the FF group. One thousand one hundred sixty-eight PC interventions were performed, 628 (FF) versus 540 (TM). In the physical domain, 343 versus 266; in the emotional domain, 219 versus 206; in the social domain, 18 versus 18; in the spiritual domain, 48 versus 50. Higher reductions in symptom intensity scores were reported in the TM arm (100% for depression, anxiety, hemorrhage, dysphagia, and secretions; >90% for pain, nausea, and appetite; >80% for sleep, dyspnea, and constipation; and >70% for cough), with statistical significance for pain ( P = 0.0140), nausea ( P = 0.0148), depression ( P = 0.0318), and constipation ( P = 0.0100). High satisfaction scores (>80, range 18-90) were reported for both arms. CONCLUSIONS:This exploratory pilot study shows that TM PC interventions are feasible and lead to high reductions in intensity scores for symptoms, with high satisfaction scores.
Objective: This narrative review aims to synthesize qualitative research on the experiences of patients, families, and healthcare professionals during the transition of advanced cancer patients from hospital to community care. Methods: A systematic search of qualitative studies published between 2010 and 2023 was conducted. Thirteen studies were selected for their relevance to the transition from hospital to community care. The studies were thematically analysed to identify recurring patterns and significant findings. Results: The analysis revealed six key themes: (1) planning and managing transitions, (2) communication between actors involved in the process of transition, (3) constraints on health systems, (4) family, as a unit of care, (5) needs of patients and families in the process of transition to community care, and (6) emotions and feelings of actors involved in the transition. This review highlighted that transitions are often poorly managed, with inadequate communication, which contributes to anxiety, a sense of loss, and disruption in care continuity. Conclusions: This review emphasizes the importance of better planning, communication, and support during transitions from hospital to community care. A coordinated approach addressing the holistic needs of patients and families, including emotional support and clear communication, is essential for smoother, more effective transitions.
Background: Despite a plethora of evidence available on the benefits of palliative care (PC), it is estimated that only about 14% of those living in low- to middle-income countries (LMIC) or developing countries have access to PC. Objective: To globally examine PC expert perspectives regarding PC infrastructure and resources within each country, drug and opioid availability to provide PC, and workforce and educational issues. Design: Descriptive, open-ended survey seeking first-hand qualitative perspectives. Setting/Subjects: PC experts from 21 developing countries representing 5 continents around the world. Measurements: Qualitative narratives and discussions with PC experts. Results: The summaries inform four key recommendations for future progress of PC in developing countries: (1) PC infrastructure should increase accessibility to both urban and rural areas; (2) increasing medication and nonpharmacologic approaches for symptoms is essential; (3) interdisciplinary education should continue to expand and include scholarships, PC certifications, and advanced education; and 4) future research with developing countries is desperately needed to advance care and progress. Conclusions: Considerable PC progress has been accomplished; however, significant gaps remain. This report can be used to discuss PC capacity building within a country. It could serve as an important document while negotiating with authorities and Ministries of Health about expanding PC infrastructure, especially in rural areas. Finally, PC champions can use this report to advocate for increased opioid availability to promote comfort; in particular, increased availability of oral opioids is essential, so that patients can die comfortably at home.
Background/Objectives: Studies have shown that healthcare providers struggle to discuss difficult end-of-life issues, including palliative sedation (PS), with patients and relatives. This qualitative study aimed to evaluate communication challenges related to PS among healthcare providers in eight European countries. Methods: In each country, two clinical settings providing palliative care were selected. Two moral case deliberation (MCD) sessions were conducted, each with 3 to 9 palliative healthcare professionals (HCPs). They discussed patient cases involving PS and refractory symptom management. Sessions were audio-recorded, transcribed, anonymized, and analyzed using a framework analysis. Results: Key issues included core communication values—open, empathetic, and honest dialogue—which were consistent across countries but varied in practice. In The Netherlands, Germany, Belgium, and the UK, communication prioritized patient autonomy through timely discussions and family dialogue. In Spain and Italy, family-centered communication approaches predominated, while in Romania and Hungary, tendencies for selective disclosure were also evident, along with delegated decision-making and complex family dynamics. Certain challenges reflected professional experience rather than national culture. Nurses mediated across contexts, while terminology surrounding palliative sedation remained a source of ambiguity. Conclusions: This is the first study to present HCPs’ perceptions of communication issues related to PS across Europe. Despite variations between settings, consistently open dialogue among patients, families, and HCPs emerged as the most valued element. These findings highlight the need to better understand how end-of-life communication about PS varies in practice and underscore the importance of considering healthcare providers’ real-world experiences to improve communication with patients and families.
CONTEXT:Cancer pain affects up to 45% of patients, with more than 30% experiencing moderate to severe pain. Despite established guidelines, over 40% of patients receive inadequate pain management, severely impacting their quality of life. While effective pain assessment is essential, a standardized approach is lacking in both research and clinical practice. OBJECTIVES:MyPath, a European Union-funded project, aims to implement a patient-centered care (PCC) approach across nine European cancer centers by systematically assessing and managing common symptoms and psychosocial issues to improve PCC for cancer patients. The aim of the present article is to describe the development of the clinical content for the MyPath Pain Care Pathway (PCP), based on patient reported outcomes (PROs) and clinical assessment, designed to offer standardized multidimensional pain management. METHODS:Between September 2022 and August 2024, an international, multidisciplinary steering group developed a systematic method for assessing and diagnosing cancer pain using evidence-based guidelines. RESULTS:The MyPath PCP pain assessment includes five key components: pain etiology, location, intensity, flares, and treatment (including relief and dose-limiting side effects), in line with the ICD-11 classification. Data will be gathered through digitalized PROs and clinical consultation in the MyPath's digital solution, which will suggest individualized pain management strategies. The first version of the tool will be implemented in 2025, with further adaptations based on feedback from patients, caregivers, and healthcare professionals. CONCLUSIONS:The MyPath PCP represents a digital standardized pain assessment approach to improve the quality of pain management for cancer patients across clinical settings.
Scope: The rationale of the present study is to measure the impact of chemotherapy on the pain caused by the disease. Materials and Methods: The present study was based on the completion of two standardized questionnaires for the assessment of physical symptoms (Brief Pain Inventory—BPI—and the revised Edmonton Symptom Assessment System—ESASr) in three different moments. The research was conducted at the Oncology Institute “Prof. Dr. Ion Chiricuță” Cluj-Napoca between 2022 and 2023. Results: 24 patients were included in the study, and they received different cytostatic treatment regimens, adapted to the underlying pathology. We analyzed the distribution of all symptoms from the ESASr and the total score. In terms of the general situation, if we exclude pain, there is never a difference between Time 2 and 3. Furthermore, in all cases where there is a statistically significant effect, there is a difference between Time 1 and 3. We also analyzed the distribution of activities with which pain interacts in BPI. Regarding the general situation, three patterns of influence of pain on the examined parameters are found: for general activity, mood, ability to work, and sleep, there are significant differences between moments 1 and 2 and 1 and 3, without significant differences between moments 2 and 3. The second pattern identified refers to the lack of effect of pain on the ability to walk and on the relationship with other people. The peculiarity is represented by the influence on the enjoyment of life that was significantly improved only from Time 1 to 3. Conclusions: The present study demonstrated a considerable effect of cytostatic treatment on the management of cancer-related pain, as shown across different evaluations.
BACKGROUND:The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability.AIM:To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers.DESIGN:Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure.SETTING:European.PARTICIPANTS:International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation.RESULTS:A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided.CONCLUSIONS:This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.
BACKGROUND:The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania).METHODS:A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data.RESULTS:Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used "almost always", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were "almost always" used during palliative sedation. The perceived use of IV hydration and artificial nutrition "almost always" was generally low, while the country where both IV hydration and artificial nutrition were considered to be "very often" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively.CONCLUSIONS:Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.
Background Patients with advanced cancer experience many symptoms and needs requiring a Palliative Care Intervention (PCI). Identifying gaps between needs for PCIs and experienced delivery may improve health care, furthermorethe association of gaps with quality indicators (QI). The multicentre Romanian (RO)-Swiss (CH) reality map study implemented a novel protocol based on needs concepts and culturally adapted quality indicators (QI). Methods An interactive mapping guide measuring unmet needs for PCIs monthly over six months, patient characteristics (cognition, EAPC basic data set, Cofactors) and QI (Inappropriate Anticancer Treatment, High Symptom Burden [IPOS, EQ5D], Repeated ER Admissions, Aggressive End-of-Life Care, and Quality of Death-and-Dying) were developed, applying swiss standards for quality assurance. A composite endpoint (QI, cofactors) was planned. Finally, local solutions responding to gaps were piloted. Results From 308 patients (RO: 262, CH: 46, age 62j [mean], 74% ECOG PS 1&2, 81% current anticancer treatment) baseline and first follow-up data revealed main gaps (symptom management, spiritual needs, family support), country differences (e.g. illness understanding, spiritual needs) and a significant association of the number of gaps with depression. Later data become less, and data quality on QI variable, revealing gaps in research conduct competences, resources, and applicability of over-sophisticated quality assurance tools. Nevertheless, the unmet needs data promoted local initiatives, 81 patients participated in feasibility studies. Finally, the joint experience stimulated academic developments and national integration of palliative care into oncology. Conclusions Pairing motivation and enthusiasm with more modest aims, feasibility testing of all outcomes and investment in research competences may disperse gaps.
Background: Understanding the principles and practice of research by health care professionals helps to improve the evidence base for palliative care practice and service delivery. Research is a core competency in palliative care that enables the identification and addressing of problems for patients and their families, establishes best practice and improves ways to manage pain, other symptoms, and concerns. This work was undertaken in the research for all palliative care clinicians (RESPACC) Erasmus+ project. Aim: To identify and develop a set of core research competencies within a structured framework for all members of the multidisciplinary palliative team. Design: A multi-method approach was used including rapid review of literature, Nominal Group Technique, and expert consultation. A quiz to self-assess research competencies outlined within the Framework was produced. Results: The Framework includes 17 competencies organized in 7 domains: The clinical context, Scientific thinking and research design, Ethics and regulatory framework for research, Study and site management, Data management and informatics, Communication and relationships, and Research leadership. In the consultation process 6 of the 17 competencies were considered as required by each individual team member, and 3 to be present within the palliative care team. Conclusion: Using a multi-method approach, the first Palliative Care Research Framework identifying core research competencies for palliative care clinicians has been developed. The aim of the framework was not to transform palliative care clinicians into researchers, but to ensure that clinicians understand the important role of research and its integration into clinical practice.
The literature review is a direct consequence of the increased volume of scientific information, becoming a necessity not only for the medical field. Such material, properly done, is of great use to any professional who wishes to keep abreast of the latest knowledge and concepts. The proposed goal is to help and guide resident doctors, doctoral students, and young researchers in understanding the concepts that are the basis of conducting a literature review and acquiring the generally accepted methodology for conducting it. The selection of information sources, accessing databases, the concept of peer-review, indexing and the impact factor are clearly presented as elements that cannot be neglected in the valorisation of scientific information sources. The structure of a literature review must consider the generally accepted format for such an article, with each chapter having its own importance. Depending on the quality and heterogeneity of the results obtained after analysing the collected data, the review can be structured narratively or systematically, the homogeneity of the results allowing the application of statistical study methods (meta-analysis). Although it seems difficult, conducting a literature review is easier and faster than developing an original study based on experimental or clinical scientific research. The literature review can be carried out in comfortable conditions, online, regardless of location and is a welcome support in the development of the professional and scientific career.