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Background The number of cancer survivors has increased in recent decades, and the majority of them suffer from sequelae of their disease and treatment. This study, which is part of the larger research project OPTILATER, aims to explore different aspects of care services for long-term survivors (≥ 5 years after initial cancer diagnosis) in Germany. The study places an emphasis on the situation of people from different age groups, with different socio-demographic and cultural backgrounds, and sexually and gender diverse individuals. Methods To investigate experiences related to follow-up care, focus groups ( n  = 2) will be conducted with members of patient advisory councils and advocacy groups, representatives of communities, healthcare workers and networks, as well as members of Associations of Statutory Health Insurance Physicians. Guided interviews will be carried out with patients and relatives (n = 40) to investigate needs, barriers and obstacles in terms of follow-up care. On this basis, additional focus groups ( n  = 2) will be carried out to derive possible scenarios for improving the consideration of needs. Focus groups and interviews will follow a semi-structured format and will be analysed content-analytically. Focus groups and interviews will be conducted online, recorded, transcribed, and analysed independently by two persons. Discussion The qualitative approach is considered suitable because of the exploratory research aims. The identification of experiences and barriers can reveal disparities and optimization potential in the care of long-term cancer survivors.

The dying phase and the loss of a loved one, as well as the grief that follows, are a difficult process in the lives of relatives. These processes have been exacerbated by the COVID-19 pandemic, as numerous restrictions on contact and care for the dying and deceased have placed an additional burden on relatives. A review was conducted to identify these specific stress factors and their risk factors, as well as support options for bereaved individuals who lost a loved one during the COVID-19 pandemic. The scoping review followed the Joanna Briggs Institute (JBI) methodology for scoping reviews, and the search was conducted in April 2024 (PubMed, Cochrane COVID-19 Study Register, and EBSCO Host, including APA PsychArticles, APA PsychInfo, CINAHL, and Medline). Studies involving adults who had lost a loved one during the official period of the COVID-19 pandemic were included, as well as various quantitative and qualitative study types. Studies that focused exclusively on palliative care and the evaluation of interventions were excluded. Studies were selected according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) phases. A total of 58 primary studies and five review articles with a total of 118,062 participants met the inclusion criteria and were included in the review. The main findings were that the pandemic and the associated measures placed additional burdens on bereaved individuals and exacerbated mental health problems. Visiting restrictions during the dying phase and restrictions on funerals were perceived as particularly stressful. Participants primarily experienced isolation and loneliness, as well as a lack of professional (e.g., from staff accompanying the dying process and the initial grieving process) and social support (e.g., from family and friends). In addition to personal resources and finding meaning, professional and social support were described as the most important factors in coping with grief during and after the pandemic. Consequently, professional, flexible, and comprehensive support from medical and nursing staff in cooperation with counselling centres and psychologists, as well as promotion of social support through networking services, are key issues for future crises.

Background Integrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe. Methods Cochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used. Results 14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place. Conclusion Based on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training.

An expert working group of the European Association for Palliative Care has revised and updated its guidelines on the use of morphine in the management of cancer pain. The revised recommendations presented here give guidance on the use of morphine and the alternative strong opioid analgesics which have been introduced in many parts of the world in recent years. Practical strategies for dealing with difficult situations are described presenting a consensus view where supporting evidence is lacking. The strength of the evidence on which each recommendation is based is indicated.

For more than 30 years, the term “palliative care” has been used. From the outset, the term has undergone a series of transformations in its definitions and consequently in its tasks and goals. There remains a lack of consensus on a definition. The aim of this article is to analyse the definitions of palliative care in the specialist literature and to identify the key elements of palliative care using discourse analysis: a qualitative methodology. The literature search focused on definitions of the term ‘palliative medicine’ and ‘palliative care’ in the World Wide Web and medical reference books in English and German. A total of 37 English and 26 German definitions were identified and analysed. Our study confirmed the lack of a consistent meaning concerning the investigated terms, reflecting on-going discussion about the nature of the field among palliative care practitioners. Several common key elements were identified. Four main categories emerged from the discourse analysis of the definition of palliative care: target groups, structure, tasks and expertise. In addition, the theoretical principles and goals of palliative care were discussed and found to be key elements, with relief and prevention of suffering and improvement of quality of life as main goals. The identified key elements can contribute to the definition of the concept ‘palliative care’. Our study confirms the importance of semantic and ethical influences on palliative care that should be considered in future research on semantics in different languages.

Fatigue is one of the most frequent symptoms in palliative care patients, reported in .80% of cancer patients and in up to 99% of patients following radio- or chemotherapy. Fatigue also plays a major role in palliative care for noncancer patients, with large percentages of patients with HIV, multiple sclerosis, chronic obstructive pulmonary disease or heart failure reporting fatigue.This paper presents the position of an expert working group of the European Association for Palliative Care (EAPC), evaluating the available evidence on diagnosis and treatment of fatigue in palliative care patients and providing the basis for future discussions. As the expert group feels that culture and language influence the approach to fatigue in different European countries, a focus was on cultural issues in the assessment and treatment of fatigue in palliative care. As a working definition, fatigue was defined as a subjective feeling of tiredness, weakness or lack of energy. Qualitative differences between fatigue in cancer patients and in healthy controls have been proposed, but these differences seem to be only an expression of the overwhelming intensity of cancer-related fatigue. The pathophysiology of fatigue in palliative care patients is not fully understood. For a systematic approach, primary fatigue, most probably related to high load of proinflammatory cytokines and secondary fatigue from concurrent syndromes and comorbidities may be differentiated. Fatigue is generally recognized as a multidimensional construct, with a physical and cognitive dimension acknowledged by all authors. As fatigue is an inherent word only in the English and French language, but not in other European languages, screening for fatigue should include questions on weakness as a paraphrase for the physical dimension and on tiredness as a paraphrase for the cognitive dimension. Treatment of fatigue should include causal interventions for secondary fatigue and symptomatic treatment with pharmacological and nonpharmacological interventions. Strong evidence has been accumulated that aerobic exercise will reduce fatigue levels in cancer survivors and patients receiving cancer treatment. In the final stage of life, fatigue may provide protection and shielding from suffering for the patient and thus treatment may be detrimental. Identification of the time point, where treatment of fatigue is no longer indicated is important to alleviate distress at the end of life. Palliative Medicine 2008; 22: 13—22.

Background In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program ‘Palliative care in Pandemics’ (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). Methods Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. Discussion For a future “pandemic preparedness” national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

Background As different definitions for PC have been used across the last three decades, a common terminology is lacking. To ensure quality of care, (a) a consensus on outcome criteria and indicators and (b) validated and applicable outcome assessment instruments are necessary. The aim of this study is to systematically review instrument for outcome assessment that have been used or proposed for research and clinical practice in palliative care. Method A systematic literature search in electronic databases Cinahl, MEDLINE, EMBASE, and PsychoINFO until December 2009 was conducted to identify articles describing outcome assessment in palliative care. Following extraction of relevant publications, the outcome assessment instruments were categorized in outcome domains and target groups. Results The literature search resulted in 8,607 hits. Deduplication and exclusion of irrelevant or unavailable publications allowed for 725 publications which were analyzed in detail. At least 528 different outcome assessment instruments were applied. Four target groups were identified: patients, family members, staff members, and the health care system. Fifteen patient domains were identified: quality of life, quality of care, symptoms and problems, performance status, psychological symptoms, decision-making and communication, place of death, stage of disease, mortality and survival, distress and wish to die, spirituality and personality, disease-specific outcomes, clinical features, meaning in life, and needs. The majority of instruments were found only in single cases and a minority of instruments were validated. Validated instruments were used more often. Conclusions The wide scope of existing instruments makes consensus on a universal set of instruments for outcome assessment in palliative care improbable. A framework with a set of appropriate instruments could help (1) to harmonize the variety of tools used in research and clinical practice, (2) to allow for more comparability, and (3) to define gaps were tools maybe missing and should be developed.

Background Most terminally ill patients request information about their remaining life span. Professionals are not generally willing to provide prognosis on survival, even though they are expected to be able to do so from their clinical experience. This study aims to find out whether the standardized instruments Palliative Prognostic Index (PPI) and the Palliative Prognostic Score (PaP-S) are appropriate, specific, and sensitive to estimate survival time in patients receiving inpatient palliative care in Germany. Method PPI and PaP-S were assessed in addition to the core documentation data set of the Hospice and Palliative Care Evaluation for patients admitted to the palliative care units in Aachen, Bonn, and Cologne. Time of survival was assessed with repeated phone calls to the family and was defined as the difference between the day of completion of the instruments (excluded) and the day of death (included). Results Survival time was compared with physicians’ estimations and prognostic scores in 83 patients. Whereas the estimates of the PPI and the PaP-S correlate highly, even higher correlations are found for the physicians’ prognosis and the scores. Correlations between survival time and the prognostic scores or physicians’ prognosis were lower. Physicians’ estimations overestimated survival time on average fourfold. Estimations were more often correct for very good and very bad prognosis. Discussion The prognostic scores are not able to produce a precise reliable prognosis for the individual patient. Nevertheless, they can be used for ethical decision making and team discussions. Estimating survival time from clinical experience seems to be easier for very bad or very good prognosis for physicians.