No / Depression in patients receiving palliative and end-of-life care is difficult to distinguish from grief and sadness. However, there are some important distinctions and it is a clinical condition that is treatable and should not be considered a necessary or normal part of the dying process. This article examines the nature of depression and describes the stress vulnerability model of depression, linking it to recent developments in the neurobiology of depression. It also discusses how to distinguish depression from other symptoms that patients may be experiencing.

No / This article presents a review of key issues around caring for people in the last hours and days of life. The aim is that community nurses will be able to support patients and families, and to provide and explain decisions and interventions to promote comfort and dignity based on current evidence.

No / Laura Middleton-Green, lecturer and researcher in palliative and end of life care, writes about how attitudes to death influence care of the dying.

Yes / The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.

No

Yes

京都大学 / 新制・論文博士 / 博士(人間健康科学) / 乙第13614号 / 論人健博第14号 / 京都大学大学院医学研究科人間健康科学系専攻 / (主査)教授 古田 真里枝, 教授 宮下 美香, 教授 片岡 仁美 / 学位規則第4条第2項該当 / Doctor of Human Health Sciences / Kyoto University / DFAM

Bakgrund och problemformulering: Vård i livets slutskede innebär att vården övergår från att vara livsförlängande till att vara lindrande. Vården kan pågå från dagar till månader och det är viktigt att sjuksköterskan anpassar vården utifrån patientens hälso- och livssituation. Sjuksköterskan ska erbjuda patienten en säker och evidensbaserad vård som utgår från patientens aktuella behov och önskemål. Syfte: Syftet är att belysa sjuksköterskans erfarenheter av vård i livets slutskede i hemmet. Metod: En litteraturöversikt enligt Friberg gransknings- och analysmetod. Resultat: Resultatet presenteras i två teman och fem subteman. Teman som identifierades var att skapa en vårdande relation vid vård i livets slutskede och sjuksköterskas roll vid vård i livets slutskede i hemmet. Slutsats: Det krävs att sjuksköterskan har kompetens, kunskap och engagemang för att kunna erbjuda patienten en god vård i livets slutskede. Trots att vård i hemmet blir allt vanligare inriktar sig den aktuella grundutbildningen för sjuksköterskor i stor utsträckning från att vårda på sjukhus. / Background and problem formulation: Care in the final stages of life means that the care transitions from being life-extending to being palliative. The care can last from days to months and it is important that the nurse adapts the care based on the patient's health and life situation. The nurse must offer the patient safe and evidence-based care based on the patient's current needs and wishes. Aim: The aim is to illustrate the nurse's experiences of end-of-life care at home. Method: A literature review according to Friberg's review and analysis method. Results: The results are presented in two themes and five sub-themes. Themes that were identified were to create a caring relationship in end-of-life care and the role of nurses in end-of-life care at home. Conclusion: It is required that the nurse has the competence, knowledge and commitment to be able to offer the patient good care in the final stages of life. Despite the fact that home care is becoming more common, the current basic education for nurses largely focuses on nursing in hospitals.

The overall aim of this thesis was to study palliative end-of-life care outside specialist palliative care settings, from an organizational perspective and from professionals’ and relatives’ experiences. In Study I 174 individuals were identified retrospectively from nursing records and palliative care identification forms as being in a palliative phase. Data were analyzed with descriptive and analytic statistical methods. In Study II a total of nine nurses working in primary home care, community care, and hospitals were interviewed. Phenomenological methodology was used to analyze data. In Study III 17 enrolled nurses, who worked in community or primary care and in a sitting service organization, participated in four focus group interviews. Data were analyzed with qualitative content analysis. In Study IV seven relatives from four families were interviewed twice. They had each cared in the private home for a dying family member who had received sitting service. Direct interpretation and categorical aggregation were used to analyze data. The results highlight challenges in palliative care, vulnerable situations, and a need of support (I–IV). Individuals’ needs for both palliative care and sitting service were identified, including those of a smaller part of the population who actually received the sitting service. (I). Registered nurses’ responsibilities included care at the same time for individuals in both palliative and curative phases. This created vulnerable situations for the nurses, since their ambitions concerning the care did not correspond to available resources (II). The enrolled nurses’ task was to manage ongoing life and dying in different care settings, to meet individual needs and still provide equivalent care. Despite experiences of vulnerable situations, they felt safe (III). Relatives experienced care situations differently, related to differences in families, the illness trajectory, the need for support, and the support offered. Without sufficient support, vulnerable situations occurred, which made the relatives feel insecure (IV). Thus, care situations in palliative end-of-life care can be experienced in different ways, with different levels of vulnerability. One implication of the research might be to suggest that professional caregivers, to supplement the relatives’ own resources with support tailored to the individual’s and the family’s needs

Bakgrund: Specialistsjuksköterskans uppgifter på en barnintensivvårdsavdelning (BIVA) är att vårda barn och det innefattar även att vårda barn i livets slutskede. Av de barn som vårdas på en barnintensivavdelning avlider cirka två procent. Att vårda barn och familjen i en situation där fortsatt vård och överlevnad för barnet är utsiktslöst är en tung och ansvarsfull uppgift. Syfte: Studiens syfte var att belysa specialistsjuksköterskors upplevelser av att ha vårdat ett barn vid livets slutskede på en BIVA. Metod: Som datasamlingsmetod användes semistrukturerade intervjuer med sju specialistutbildade sjuksköterskor. Intervjuerna genomfördes med hjälp av en intervjuguide bestående av en huvudfråga och därefter följdfrågor. Data bearbetades utifrån kvalitativ innehållsanalys med en beskrivande ansats. Resultat: Resultatet presenteras i tre kategorier och tio subkategorier. De tre kategorierna var följande: Att känna sig trygg och erfaren i att vårda ett döende barn, familjen i fokus samt upplevelsen av stöd och strategier i det komplexa vårdandet. Diskussion: Trots att upplevelsen av att vårda barn i livets slut är en tung och känslomässig uppgift ansåg samtliga informanter det som en ansvarsfull och positiv uppgift där de kunde göra föräldrarnas sista stund med sina barn till ett fint och ljust minne. / One of the caring tasks that specialist nurses, working in the (PICU) perform, and have to face in the daily profession is to care for children who are facing the end of life in Sweden. Approximately two percent of all the children being cared for in the PICU dies. To care for children and their families when further treatment is futile is a heavy surrounding life and death. The goal of this study was to investigate the experiences of specialist nurses caring for children at the end of life. Qualitative content analyze were used as a method. Seven semi-structured interviews, with a descriptive approach, were transcribed to condensed meanings. Finally, the meaning was coded into ten subcategories within three main categories. Conclusion of this study indicated that pediatric intensive care nurses indicated their work heavy emotionally. The nurses play a vital role to the family´s final time whit their children. It is in the hands of the nurses to support and make the final time as valuable and beautiful as possible for the family.