Yes / Family carers report high levels of decisional conflict when deciding whether their relative with dementia can continue to be cared for in their own home. We tested, in a feasibility randomised controlled trial, the first decision aid (the DECIDE manual) aiming to reduce such conflict. Twenty family carers received the DECIDE intervention, and 21 received usual treatment. The intervention group had reduced decisional conflict compared with controls (mean difference −11.96, 95% confidence interval −20.10 to −3.83, P=0.005). All carers receiving the intervention completed and valued it, despite some still reporting difficulties with family conflict and problems negotiating services. Declaration of interest None. Copyright and usage © The Royal College of Psychiatrists 2017. This is an open access article distributed under the terms of the Creative Commons Non-Commercial, No Derivatives (CC BY-NC-ND) license.

Yes / People with dementia and their relatives find decisions about the person with dementia living in a care home difficult. Methods: We interviewed 20 people with dementia or family carers around the time of this decision in order to design a decision-aid. Results: Decision-makers balanced the competing priorities of remaining somewhere familiar, family’s wish they remain at home, reduction of risk and effects on carer’s and person with dementia’s physical health. The person with dementia frequently resented their lack of autonomy as decisions about care home moves were made after insight and judgment were impaired. Family consultation usually helped carers but sometimes exacerbated tensions. Direct professional support was appreciated where it was available. There is a need for healthcare professionals to facilitate these conversations around decision-making and to include more than signposting to other organisations. Conclusions: There is a need for a healthcare professional facilitated decision-aid. This should detail what might change for the person with dementia and their carer, possible resources and alternatives and assist in facilitating discussion with the wider family; further research will develop and test a tool to facilitate decision making about place of care needs.

Bakgrund: Palliativ vård är ett förhållningssätt med syfte att förbättra livskvaliteten för patienter och närstående inom palliativ vård. Traditionellt sett så har lite uppmärksamhet inom omvårdnadsforskning riktats mot geografiska sammanhang. Palliativ vård är en filosofi, och är därför inte kopplad till en specifik plats. Patientens faktiska dödsplats har blivit en viktig del i bedömningen av vårdkvalitet under livets sita tid och många länder använder statistik kring en patients önskade dödsplats och faktiska dödsplats. Var en person dör svara på frågan om dödsplats men nämner inte mycket om tiden fram till dödsfallet och var den sista tiden tillbringades. Mer forskning i Sverige behövs om var patienter vill vårdas under sin sista tid i livet. Detta eftersom det behövs större förståelse för varför vissa vill vårdas hemma, varför många väljer att inte vårdas hemma och varför idealet att dö hemma inte är lämpligt för alla individer.  Syfte: Att belysa betydelsen av vårdplats för patienter i palliativ sjukdomsfas.  Metod: Litteraturöversikt med sökningar efter kvalitativa artiklar i PubMed och CINAHL. Innehållsanalys av manifest metod med syfte att hitta liknande innehåll i text oxh utforma huvudkategorier och underkategorier.  Resultat: Två huvudkategorier utformades. Betydelsen av vårdplats för patienter i palliativ sjukdomsfas visade sig påverkas antingen av miljön eller organisationen. Vårdplatsens betydelse på en organisatorisk nivå kopplades samman med påverkan på närstående, tillgång till personal och hjälpmedel samt möjlighet till symtomlindring medan miljöfaktorer handlade om trygghet och otrygghet. Resultatet visade även att önskad vårdplats/dödsplats kunde variera över tid och skilda önskemål mellan patienter och närstående kunde göra planeringen inför livsts sista tid svår. Slutsats: Det mest relevanta som framkom i denna litteraturöversikt handlar om vilken vårdplats en patient väljer och varför. Patientens eget hem valdes ofta som vårdplats för att närhet till familj och bekanta saker hade stor betydelse, men resultatet visade också att hemmet ansågs som en osäker plats för många patienter bland annat på grund av rädslor, isolering eller tung vårdtyngd. / Background: Palliative care is an approach aimed at using the quality of life for patients and relatives in palliative care. Traditionally, little attention in nursing research has been directed towards geographical contexts. Palliative care is a philosophy and is therefore not linkedto a specific place. The patient's actual place of death has become an important part of the assessment of quality of care during the last period of life and many countries use statistics about and patients want place of death and actual place of death. Where a person dies answers the question of place of death but does not mention much about the time until the death and where the last time was spent. More research in Sweden is needed on where patients want to be cared for during their last period in life. There is a need for a greater understanding of why some want to be cared for at home, why many chose not to be cared for at home and why the ideal of dying at home is not suitable for all individuals. Aim: To illuminate the importance of place of care for patients in palliative phase. Method: A literature review with searches for qualitative articles in PubMed and CINAHL. Content analysis of manifest method with the aim of finding similar content in text and designing main categories and subcategories.  Results: Two main categories. The importance of care for patients in the palliative care phase was found to be affected by either the environment or the organization. The importance of the care site at an organizational level was linked to the impact on relatives, access to staffand aids as well as the possibility of symptom relief, while environmental factors were about security and insecurity. The results also showed that the desired place of care /place of death could vary over time and different wishes between patients and relatives could make planning for the last days of life difficult.  Conclusion: The most relevant thing that emerged in this literature review is about which care place a patient chooses and why. The patient's own home was often chosen as a care place because proximity to family and familiar things was of great importance, but the results also showed that the home was considered an unsafe place for many patients, among other things due to fears, isolation or heavy care burden.

Background: Place of death is a commonly reported indicator for assessing palliative care quality, but does not provide details of healthcare service utilization at the end-of-life, such as acute care. In particular, early palliative care has shown to reduce acute care service use, but findings are mostly limited to cancer patients with few population-based data available. Objectives: The purpose of this research is to: 1) explore place of care trajectories in the last 2 weeks of life in a general population and among distinct illness cohorts, and 2) investigate whether early versus late palliative care affects acute care use and other publically-funded services in the last 2 weeks of life. Research Design: A retrospective population-based cohort study using linked administrative health data to examine all Ontario decedents between April 1st, 2010 and December 31st, 2012. Methods: Descriptive statistics were used to examine place of care trajectories and service utilization trends in the last 2 weeks of life. Multivariable logistic regression analyses were conducted to assess in the 2 weeks before death: 1) the odds of using an acute care setting (yes/no), and 2) the odds of time spent (≤1 week or >1week) in acute care settings among users. Results: Overall, 235,159 decedents were identified. About 32% had cancer, 31% had organ failure, and 29% had frailty. Overall, 29% of decedents used a hospital two weeks before death, but this increased to 61% on the day of death. Those with cancer were the largest users of palliative-acute hospital care, while those with organ failure were the largest users of acute- hospital care. Assessing palliative care timing, 27% were early palliative care recipients, 13% were late. About 45% of early recipients had a community-based palliative care initiation, 74% of late recipients had a hospital-based initiation. Late recipients were more likely to use acute care settings; this was further modified by disease: comparing late to early recipients, cancer decedents were nearly two times more likely to spend >1 week in acute care settings (OR=1.84, 95%CI:1.83-1.85), frailty decedents were three times more likely (OR=3.04, 95%CI:3.01-3.07), and organ failure decedents were four times more likely (OR=4.04, 95%CI:4.02-4.06). Conclusion: Place of care trajectories differ greatly by disease cohort. Exploring place of care trajectories can provide details not evident when reporting solely place of death. Furthermore, early palliative care was associated with reduced acute care service use in cancer and non-cancer patients. Late initiations were associated with greater acute care use, and had the largest effect on those with organ failure and frailty, suggesting potential opportunities for improvement in non- cancer populations. / Thesis / Master of Science (MSc)