Browsing by Subject "palliative care"

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  • Vähäkangas, Auli Maria (2016)
    Tanzania’s first president Julius Nyerere’s Ujamaa (living together or living as one family) still extends its influence on Tanzanians’ understanding of communality. The era of Ujamaa socialism as a political system is now history, but some of its heritage still seems to influence how people in Tanzania regard family as well as community and how they act within their community. In this article I differentiate between Nyerere’s political Ujamaa and the traditional Tanzanian communality which was the model for Nyerere’s political program. I thus argue, that the Selian palliative care program could be seen as a present-day example of how Ujamaa — both in political and traditional forms — still influences communal life in Tanzania. The results of this study reveal that the Selian Hospice and Palliative Care Program uses dimensions of both traditional and political Ujamaa in order to protect the dignity of the dying patients. This is done subconsciously and eclectically. The term Ujamaa was not explicitly used in the data of this study. The Program seems to stress communality and social responsibility in general while clearly utilizing the values of both traditional and political Ujamaa all through its practices.
  • Kokkonen, Kristiina; Tasmuth, Tiina; Lehto, Juho T.; Kautiainen, Hannu; Elme, Anneli; Jaaskelainen, Anna-Stina; Saarto, Tiina (2019)
    Background/Aim: To observe changes in symptoms and health-related quality of life (HRQoL) over 7 years among cancer patients at different stages of the disease. Patients and Methods: This prospective cross-sectional study at the Helsinki University Hospital Cancer Center, was carried out in 2006 and repeated in 2013. All participants filled in the EORTC-QLQ-C30 questionnaire. Results: Altogether, 581 patients responded (49% in 2006 and 54% in 2013). The disease was local in 51% and advanced in 49% of patients. The HRQoL was significantly lower, except for emotional and cognitive functions, and the symptom burden more severe in advanced cancer. The most prevalent symptoms were fatigue (93% and 85%; moderate/severe 22% and 9%), pain (65% and 47%; moderate/severe 16% and 5%), and insomnia (64% and 60%; moderate/severe 20 and 21%), respectively. No changes in HRQoL or symptoms were found at 7 years. Conclusion: There is a need for early integrated palliative care to improve HRQoL during cancer treatments.
  • Hakola, Outi (2021)
    Background: The 21st century has seen a proliferation of end-of-life documentary films and television documentaries that contribute to building a public image of hospice and palliative care. The way in which terminally ill patients are represented in these documentaries creates impressions of who is welcomed to receive end-of-life care. These documentary representations have not been previously mapped. Methods: Using quantitative content analysis, I analyzed 35 contemporary Western documentaries and studied their diversity in the representations. I focused on terminally ill patients who are given time and space in the narration to voice their views about the end-of-life process. I paid attention to such elements as gender, race and ethnicity, age, class, religion and sexuality. Results: The documentaries welcomed the representations and voices of terminally ill people. Class, religion and sexuality often had a marginal role in narration. The gender diversity of the representations was quite balanced. Regarding age, the documentaries preferred stories about working age patients for dramatic purposes, yet all age groups were represented. However, the documentaries had an identifiable racial and ethnic bias. With a few exceptions, terminally ill who had a personal voice in the narrations were white. In comparison, racial and ethnic minorities were either absent from most of the documentaries, or their role was limited to illustrations of the general story. Conclusions: End-of-life documentaries provide identifiable access to the patients’ experiences and as such they provide emotionally and personally engaging knowledge about hospice and palliative care. While these representations are people-oriented, they include racial disparities and they focus mostly on the experiences of white terminally ill patients. This bias reinforces the misleading image of hospice and palliative care as a racialized healthcare service.
  • Kuosmanen, Lotta; Hupli, Maija; Ahtiluoto, Satu; Haavisto, Elina (2021)
    Background Shared decision-making is a process where the decisions regarding patients' care are done in collaboration with the patient, the patient's family and a healthcare professional or an interdisciplinary team. Shared decision-making is considered to be a part of patient centred care, and it enables patient autonomy which is a cornerstone of palliative care. In the past, research on the experiences of palliative care patients' participation in shared decision-making involving a nurse has been limited as the focus has mainly been on specific medical interventions, rather than holistic palliative care. Objectives To synthesise research findings on patient participation in shared decision-making in palliative care. Research design An integrative literature review. Methods The literature search was conducted by searching computerised databases (CINAHL, PubMed, PsychINFO and COCHRANE). The search resulted in 12 articles. The quality of the included articles was evaluated with JBI checklist, and the data analysis was done using inductive content analysis. Reporting was done according to a PRISMA checklist. Findings Patients do participate in shared decision-making and desire to participate in everyday nursing care decisions, treatment-related medical decisions and end-of-life decisions. The prerequisites for patient participation in shared decision-making are interdisciplinary teamwork, open communication, good patient-healthcare professional relationship, a favourable environment and mutual information. Conclusion Palliative care patients do participate and desire to participate in decisions that cover a much broader range of topics than just medical interventions and this should be addressed in future research and in practise. The main responsibility for successful patient participation in shared decision-making lies with the healthcare professionals and the organisations providing palliative care. There is a need to conduct more research from the patient's perspective and explore the meaning of participating in shared decision-making from the patient's point of view.
  • Saarelainen, Suvi-Maria; Vähäkangas, Auli; Anttonen, Mirja Sisko (2020)
    Increasingly more older people are now being cared for in their own homes. Furthermore, it has become more common that people stay at home to receive end-of-life care. Using interpretative phenomenological analysis (IPA), we analyzed the religious experiences of older people (aged 65+). We answered these questions: What kind of religious experiences do older people have when death is approaching? What does this tell us about their religious coping? As IPA is based on the in-depth analysis of small amounts of homogenous data, we analyzed five interviews with older people who were dying. We identified three main themes. First, religious experiences are relational, that is, deeply rooted in personal relationships. Second, religious experiences are real and can provide both struggles and comfort in the last stage of life. Third, the experience of encountering one's mortality and planning for one's death was calming; while many had unclear views on the afterlife, the idea of continuing bonds after death was comforting. More open discussion on religious matters, death, and dying would be welcomed as part of home-based end-of-life care.
  • Lamppu, Pauli J; Pitkälä, Kaisu (2021)
    Objectives: The aim was to review evidence from all randomized controlled trials (RCTs) using palliative care education or staff training as an intervention to improve nursing home residents' quality of life (QOL) or quality of dying (QOD) or to reduce burdensome hospitalizations. Design: A systematic review with a narrative summary. Setting and Participants: Residents in nursing homes and other long-term care facilities. Methods: We searched MEDLINE, CINAHL, PsycINFO, the Cochrane Library, Scopus, and Google Scholar, references of known articles, previous reviews, and recent volumes of key journals. RCTs were included in the review. Methodologic quality was assessed. Results: The search yielded 932 articles after removing the duplicates. Of them, 16 cluster RCTs fulfilled inclusion criteria for analysis. There was a great variety in the interventions with respect to learning methods, intensity, complexity, and length of staff training. Most interventions featured other elements besides staff training. In the 6 high-quality trials, only 1 showed a reduction in hospitalizations, whereas among 6 moderate-quality trials 2 suggested a reduction in hospitalizations. None of the high-quality trials showed effects on residents' QOL or QOD. Staff reported an improved QOD in 1 moderatequality trial. Conclusions and Implications: Irrespective of the means of staff training, there were surprisingly few effects of education on residents' QOL, QOD, or burdensome hospitalizations. Further studies are needed to explore the reasons behind these findings. (C) 2020 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
  • Haltia, Olli; Färkkilä, Niilo; Roine, Risto Paavo; Sintonen, Harri; Taari, Kimmo; Hänninen, Juha; Lehto, Juho Tuomas; Saarto, Tiina (2018)
    Background: Palliative care needs are increasing as more people are dying from incurable diseases. Healthcare costs have been reported to be highest during the last year of life, but studies on the actual costs of palliative care are scarce. Aim: To explore the resource use and costs of palliative care among end-stage breast, colorectal and prostate cancer patients after termination of life-prolonging oncological treatments, that is, during the palliative care period. Design: A real-life longitudinal register- and questionnaire-based study of cancer patients' resource use and costs. Participants: In total, 70 patients in palliative care with no ongoing oncological treatments were recruited from the Helsinki University Hospital or from the local hospice. Healthcare costs, productivity costs and informal care costs were included. Results: The mean duration of the palliative care period was 179days. The healthcare cost accounted for 55%, informal care for 27% and productivity costs for 18% of the total costs. The last 2weeks of life contributed to 37% of the healthcare cost. The costs of the palliative care period were higher in patients living alone, which was mostly caused by inpatient care (p=0.018). Conclusion: The 45% share of indirect costs is substantial in end-of-life care. The healthcare costs increase towards death, which is especially true of patients living alone. This highlights the significant role of caregivers. More attention should be paid to home care and caregiver support to reduce inpatient care needs and control the costs of end-of-life care.
  • Ranni, Emma (Helsingin yliopisto, 2020)
    Abstract Background Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease with unknown pathogenesis and beyond curative treatment. Due to severe and progressive problems in swallowing, speech, respiration and mobility, palliative care has a significant role in the treatment of ALS throughout the disease trajectory. Aim To investigate the early integration of structured palliative care pathway for patients with ALS Design A retrospective follow-up study Setting The study population consisted of all ALS patients (69 patients, 35 male, median age 66) referred to the Palliative Care Unit at the Helsinki University Hospital according to the palliative care pathway in 2015 and 2016. The observation period continued until 2018 or death. The data was collected retrospectively from the patient records. Results The median time from the diagnosis to the first contact of the Unit was five months (range 0-88 months). Percutaneous endoscopic gastrostomy (PEG) was placed to 38 (55 %) patients, and 36 (52 %) used non-invasive ventilation (NIV). The median survival was 11 months (range 0-40 months) from the first contact to the Unit, and respectively 18 months (range one month - ten years) from the time of diagnosis. Fifty-seven (83 %) of the 69 patients died during the observation period. Sixty per cent of patients received specialized end of life care, and hospice was the most common place of death (47 %). Conclusions Structured palliative care pathway enables integration of palliative care into the care of ALS patients and specialized end of life care for most of the patients.
  • Vanhanen, Aija; Niemi-Murola, Leila; Poyhia, Reino (2021)
    Background and Objective: The European Association for Palliative Care (EAPC) published recommendations for postgraduate education in palliative medicine in 2009. However, it is currently unknown how the EAPC remommendations are implemented in national programs, as audits of them are lacking. In Finland, the national society of palliative medicine has been organizing postgraduate palliative medicine training for experienced physicians since 2008, but the program has not been audited. The aim of this study was to perform a comprehensive analysis of the program. Design: In 2018-2019, a questionnaire on the Finnish Training Program for Palliative Medicine Competence was sent to past participants and delivered in person to current trainees. Learning outcomes were assessed with validated instruments for received skills and attitudes. All available educational archives were examined as well. Results: Forty-five (32 %) out of 155 specialists and 13 (38 %) out of 34 trainees responded. According to their assessments, the training provided them well with most skills required to work as palliative care specialists, but poorly with research capabilities. However, the Finnish program covers the EAPC guidelines well. Problem-based education, group work, and clinical excursions have been added to the latest curriculum. Maturation through work is needed for administrative and consultant competences. Conclusion: The EAPC guidelines can be included in a national course. The course had an important positive influence on the attitudes and learning of physicians in palliative medicine. The development of the education would benefit from pedagogical consultation. Uniform standards for auditing national programs should be developed.