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Povzetek: Palliative care aims to enhance the quality of life of patients and their families facing progressive and incurable disease by addressing physical, psychological, social, and spiritual challenges. Despite being recognized as a human right, palliative care remains out of reach for most people worldwide, with only about 14% of those who need it receiving it. Global demand for palliative care is rising due to aging populations and the increasing burden of chronic diseases. While high-income countries focus on expanding access and inclusivity to this care, low-income countries face severe shortages in prevention, diagnostics and treatment of underlying diseases, which creates an urgent need for palliative care services. Cultural differences, a lack of trained professionals, limited opioid availability, and weak policy further deepen inequities. Conclusions. Historically rooted in religious and charitable care, modern palliative care emerged with Dame Cicely Saunders’ hospice movement, evolving into a medical specialty. Access varies widely – Europe has high integration in some countries but significant disparities in service distribution and opioid use. Africa, Latin America, and parts of Asia still lack widespread provision. In Slovenia, palliative care development began in the 1980s and has recently expanded to include some specialized palliative care services across the country. Despite this progress, palliative care in Slovenia remains underdeveloped due to limited coverage, regional disparities, workforce shortages, insufficient formal education, and an old and ineffective national policy. Opioid availability is slightly below the European average, and its use is declining, which raises concerns about further unmet needs.
Ključne besede: palliative care, inaccessibility, opioids, basic palliative care
Objavljeno v DiRROS: 01.04.2026; Ogledov: 98; Prenosov: 40
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Povzetek: Introduction: Advance care planning is a very important challenge in the field of palliative and hospice care. The aim of this study was to review empirical evidence on the effectiveness of advance care planning in palliative and hospice care for older adults with dementia, focusing on nursing home residents. Methods: The literature search was conducted in the PubMed, ScienceDirect and Scopus databases. The search terms included "advance care planning," "dementia," "palliative care," and "nursing home." The review included quantitative, qualitative and mixed-methods studies focussing on advance care planning for older adults with dementia published in English up to 2023. A narrative synthesis approach was used. Results: The review included a total of 10 studies. We identified two distinct concepts: advance care planning and empowerment of older adults with dementia. Discussion and conclusion: Our literature review revealed a clear relationship between the preferences expressed by older adults with dementia concerning their end-of-life care, their will to live and desire for less emotional distress at the end of life. Future research should employ a multidisciplinary approach to investigate the long-term impact and financial aspects of timely implementation of advance care planning, as well as appropriate strategies to empower its providers.
Ključne besede: advance directive, palliative care, empowerment, dignity
Objavljeno v DiRROS: 28.01.2026; Ogledov: 250; Prenosov: 166
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Povzetek: Background: Hypoplastic left heart syndrome (HLHS) was a fatal congenital heart defect (CHD) until the 1980s. Introduction of the Norwood procedure and subsequent Fontan operation significantly improved survival by creating a single-ventricle circulation. Due to the high mortality associated with the Norwood operation, neonatal orthotopic heart transplantation emerged as an alternative, despite challenges such as lifelong immunosuppressive treatment and uncertain longevity of transplanted hearts. Methods: A narrative review with a systematic literature search was conducted in the PubMed, following PRISMA guidelines and included studies of ethical and medical considerations, decision-making, counseling and treatment planning in children with HLHS. In addition, we manually screened reference lists to identify further relevant literature. We aimed to explore: how do ethical considerations and decision-making processes influence the management and outcomes of fetuses and neonates with HLHS and their families across prenatal, postnatal, and long-term care? Results: Of the 115 studies, 56 met the inclusion criteria. Early diagnosis through prenatal fetal ultrasound has markedly improved survival rates by enabling better parental awareness, counseling, and decision-making. Managing HLHS requires urgent, extensive, and costly medical interventions, with outcomes influenced by the healthcare system's expertise, the experience of cardiologists and surgeons, ethical, legal, and religious considerations of the parents and medical team. The prenatal phase is crucial for optimal management, with advanced fetal ultrasound facilitating early detection. Postnatal care involves a multidisciplinary approach, including stage palliation physiology/surgery tailored to each patient. Despite surgical advancements, HLHS patients face higher morbidity and mortality rates than other patients with CHDs, with long-term survival and quality of life remaining key concerns. Ethical considerations play a significant role in the management of HLHS, encompassing the autonomy of families, the best medical interests of the child, societal, and cultural factors. Decision-making must balance full disclosure with sensitivity to parents' values and beliefs. Conclusions: Management of HLHS involves multidisciplinary approach with complex medical and ethical considerations, but the current literature lacks high-quality studies or consensus guidelines on ethical decision-making. Therefore, the influence of ethical considerations on clinical management and patient care remains unclear, highlighting the need for further research.
Ključne besede: hypoplastic left heart syndrome, congenital heart defect, prenatal diagnosis, neonatal care, palliative surgery, medical ethic, multidisciplinary care, decision making
Objavljeno v DiRROS: 12.12.2025; Ogledov: 573; Prenosov: 211
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Povzetek: Background: There is a concern that terminally ill cancer patients may be aggressively treated due to the rapidly growing possibilities of anticancer treatment. The aim of this study was to evaluate the use of anticancer treatment at the end of life (EoL). Materials and methods: This retrospective study included adult patients with advanced solid cancers who were treated at the Institute of Oncology Ljubljana and died of cancer between January 2015 and December 2019. A multiple logistic regression model was used to assess an association between the aggressiveness of anticancer treatment (i.e. systemic therapy, radiotherapy and surgery) in the last 2 weeks of life and year of death, age at death, sex, prognosis of cancer and enrolment into the specialist palliative care (SPC). Results: We included 1736 patients in our analysis. Overall, 13.7% of patients were enrolled into the SPC and 14.4% received anticancer treatment in the last 2 weeks of life. The odds of receiving anticancer treatment significantly increased over time [odds ratio (OR) 1.15, 95% confidence interval (CI) 1.04-1.27]. There was an increased use of novel systemic therapy (e.g. small-molecule targeted therapy and immunotherapy) at the EoL. Older patients had significantly lower odds to receive anticancer treatment in the last 2 weeks of life as compared to younger patients (OR 0.96, 95% CI 0.95-0.98). As compared to patients receiving only a standard oncology care, those also enrolled into the SPC had significantly lower odds for anticancer treatment in the last 2 weeks of life (OR 0.22, 95% CI 0.12-0.43). Conclusions: Terminally ill cancer patients have increased odds for receiving anticancer treatment, especially novel systemic therapies, in the last 2 weeks of life. Younger patients and those not enrolled into the SPC are at particular risk for anticancer treatment at the EoL
Ključne besede: systemic therapy, aggressive treatment, anticancer drugs, palliative care
Objavljeno v DiRROS: 18.04.2024; Ogledov: 1324; Prenosov: 749
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Povzetek: Background: Volunteers make a huge contribution to the health and wellbeing of the population and can improve satisfaction with care especially in the hospice setting. However, palliative and end-of-life-care volunteer services in the hospital setting are relatively uncommon. The iLIVE Volunteer Study, one of eight work-packages within the iLIVE Project, was tasked with developing a European Core Curriculum for End-of-Life-Care Volunteers in hospital. Aim: Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life. Design: Delphi Process comprising the following three stages: 1. Scoping review of literature into palliative care volunteers. 2. Two rounds of Delphi Questionnaire. 3. Nominal Group Meeting. Setting/participants: Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries. Results: The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus. Conclusion: Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts.
Ključne besede: palliative care, death, volunteers, hospitals, consensus, Delphi technique, end-of-life care, Delphi study, iLIVE project
Objavljeno v DiRROS: 13.09.2022; Ogledov: 1627; Prenosov: 699
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