This inquiry, which employed a narrative research approach, critically explored the ethical dimension of hospice palliative care. Hospice palliative care is the profession specifically developed to care for the dying. The development of this practice has grown significantly since the 1980s in Australia, yet ethical inquiry into this professional practice has largely focused on particular issues, problems or dilemmas, such as euthanasia. Although particular ethical issues are important considerations, a broader investigation of the ethics of hospice palliative care practice has not been given sufficient consideration in the growing accumulation of the research literature in Australia. Jennings (1997) surmises that “systematic reflection on ethics in the hospice field is curiously underdeveloped” (p. 2). This study goes someway towards filling this gap. In building upon the Pallium research by European scholars and integrating a social practice framework (Isaacs, 1998) this inquiry provides an alternative account of the ethical agenda and one which has privileged an internal exploration, rather than assume that the ethics would be the same as any other health care modality or to simply adopt a dominant, principles-based approach. These internal explorations were located in the storied accounts of thirty interdisciplinary hospice palliative care professionals. This thesis provides a thorough, textual conversation into the realm of ethical caregiving at the end of life. Several key insights were illuminated. Firstly, total care must be central to the philosophy underpinning hospice palliative care practice, but this concept and practice of total care was being eroded and contested. Secondly, a predominantly modernist account of personhood was located in the narrative accounts. This modernist account of personhood was thought to be insufficient for the practice of total care and needed to be reconceptualised. An embedded ontological account was provided which would assist with the understanding and practice of total care. Thirdly, initially it was thought that there was no common, shared understanding of the purpose of the practice. It was suggested that the profession was “wandering in the wilderness” when it came to the aim of its practice. However, the professionals did share a common telos (aim towards a good) and it was overwhelmingly relational. This led to the proposal of a new telos for hospice palliative care practice centered on the creation and maintenance of unique relationships which would assist people in their final stage of life. Lastly, the ethical frameworks which guided practice for the professionals were presented. In these frameworks it was significant values (acceptance of human mortality, total care and honest and open communication) and relationships (how we treat each other) which played the main role in what constituted hospice palliative care ethics. An account of a hospice palliative care ethical relationship was provided which included a proximity stance of in-between. Overall, any ethic for hospice palliative care must have at the heart the relationship between professional caregiver and living-dying person. The relationships in this social practice, between each other, accompanying one another, are our ethical compass. This thesis concluded that hospice palliative care, as a social practice, has a rich ethical dimension as understood and articulated by its professional members. These insights have resulted in the construction of a new ethical framework reflecting, formalising and adapting the ethical dimension as understood by its professional members. This ethical framework - A Relational Ethic of Accompanying - is needed to help maintain, sustain and protect the unique identity of this profession. This framework adds to the “moral vocabulary” (Jennings, 1997) and “moral specificity” (ten Have & Clark, 2002) of hospice palliative care practice. In addition, it would provide important guidance to palliateurs reflecting on how best to provide quality, compassionate and ethical care at the end of life.

Syftet var att belysa hur hopp upplevs av patienter i palliativ vård. Bakgrunden uppmärksammar att ca 90 000 patienter i palliativ vård dör i Sverige varje år. Dessa patienter upplever flera dimensioner av smärta, både fysiska och psykiska. Hopp beskrivs som något som kan leda patienter mot mer positiva mål och handlingar och är därför av stor betydelse för deras välmående. Metoden för studien är en allmän litteraturstudie baserad på kvalitativ forskning. Analysen är utförd med en induktiv ansats. Utefter likheter som identifierades fastställdes 17 subkategorier, sex kategorier och två övergripande teman. Resultatet belyser hur hopp uttrycks hos patienter i palliativ vård. Oförändrat hopp, omvandlande hopp, strategiskt hopp, övervinnande hopp ochvardagsnära hopp var kategorier som framkom som hoppingivande. I kontrast till hoppet fanns där också en hopplöshet. Hopplösheten identifieras som ett hinder för hopp vilket ökade passiviteten och känslan av hjälplöshet. Konklusion av studien är att upplevelsen av hopp uttrycks på olika sätt genom vårdförloppet. Det finns flera kategorier som är återkommande i tidigare forskning. De flesta fynden identifieras som hoppingivande och visade sig ge ökad livskvalitet för patienter. Emellertid, så saknas det forskning kring hur patienter ville bli bemötta i sitt hopp. / The aim of this study was to highlight how hope is experienced by patients in a palliative care context. The background notes that about 90 000 palliative patients die in Sweden each year. The patients in palliative care experience several dimensions of pain, both physical and psychological. Hope is described as something that can lead patients towards more positive goals and actions and is therefore of great importance for their wellbeing. The method of this study is a general literature study based on qualitative research. The analysis is performed with an inductive approach. Following similarities identified 17 subcategories, six categories and two overall themes that where established. The result illustrates how hope is expressed in palliative care patients. Unchanged hope, transformational hope, strategic hope, overcoming hope and everyday hope were categories that emerged as hopeful. In contrast to the hope there were also a hopelessness. The hopelessness was identified as an obstacle to hope which increased passivity and the feeling of helplessness. The conclusion of this study is that the experience of hope is expressed in different ways through the care process. There are several categories that are recurring in earlier research. Most discoveries are identified as hopeful and proved to increase the quality of life for patients in the palliative care context. However, there is no research about how patients would like to be treated regarding their hope.

abstract: This study aimed to understand the factors that influence Chinese American older adults’ advance care planning (ACP) on end-of-life care. The Theory of Planned Behavior (TPB) and Health Belief Model (HBM) were primarily applied to explain Chinese American older adults’ intentions toward two behaviors: 1) discussion of end-of-life care plans with family members and 2) completion of an advance directive (AD). Additionally, acculturation and family cohesion were considered to examine their impacts on the TPB and HBM. A cross-sectional survey was conducted through face-to-face interviews on a sample of 298 community-dwelling Chinese-American adults aged 55 and older living in the metropolitan Phoenix area of Arizona. Based upon random assignment, 161 participants answered questions regarding discussing end-of-life care plans with family members, while 137 participants answered questions related to the completion of an AD. Hierarchical multiple regression analysis was used to focus on the influence of TPB and HBM measures on behavioral intentions toward the two behaviors. Results indicated that both the TPB and HBM had predictive power to explain the target population’s intentions. However, the predictability of TPB and HBM measures varied across the two behaviors. Acculturation moderated the relationship between attitudes and intentions to complete an AD negatively. Family cohesion moderated the relationship between perceived benefits and intentions to discuss end-of-life care plans with family members negatively. These findings would help inform future interventions for improving the target population’s ACP awareness and engagement. / Dissertation/Thesis / Doctoral Dissertation Communication 2018

Bakgrund: Vård i livets slutskede bygger på att lindra lidande samt förbättra livskvaliteten för patienten, vilket är en del av sjuksköterskors grundläggande ansvarsområden och ingår i den personcentrerade vården. Beroende på vilket stadie i sjukdomen patienten befinner sig i påverkas vilka vårdinsatser som behövs. Sjuksköterskor ställs inför stora utmaningar och har en definitiv roll i omvårdnaden av patienten i livets slutskede.Syfte: Att sammanställa kunskap om sjuksköterskors upplevelser och erfarenheter av vård i livets slutskede på sjukhus.Metod: En litteraturöversikt som sammanställer både kvalitativa och kvantitativa artiklar från databaserna PubMed och CINAHL.Resultat: Resultatet baseras på vetenskapliga artiklar från olika delar i världen. Uppsatsförfattarna har valt att dela in resultatet i huvudkategorier: Känslomässiga reaktioner hos sjuksköterskor, Tids- och resursbrist för att stödja patienten i livets slutskede, Påverkbara aspekter i vårdmiljön, Kommunikation mellan sjuksköterskor och patienten och Behov av kunskap och utbildning i palliativ vård. Sjuksköterskor upplever blandade känslor och delade meningar om att vårda patienter i livets slutskede och möta deras behov i slutet av livet vilket beror på sjuksköterskors yrkeserfarenhet.Slutsats: Sjuksköterskor upplever känslomässiga reaktioner, tids-och resursbrist, brist på utbildning samt olika nivåer av erfarenheter vilket är faktorer som försvårar deras arbete av vård i livets slutskede. Detta gav känslor av otillräcklighet. Sjuksköterskor upplevde även att kommunikationen var svår vilket oftast grundade sig i att sjuksköterskorna kände sig otrygga i sina roller i arbetet med patienter i livets slutskede medan sjuksköterskor med längre erfarenhet och de som hade högre kunskap inte hade några svårigheter att möta dessa patienter. / Background: End of life care based on relieving suffering and improving the quality of life for the patient´s, which is the nurses basic responsibilities, which are part of the person centered care. Depending on the stage of the disease the patient is in, the helath care needs are affected. The nurse´s faces major challenges and has a definite role in nursing care in the final end of life.Aim: To compile the nurse's experiences about palliative care in hospitalsMethod: A literature review which compiles qualitative and quantitative articles from databases PubMed and CINAHL.Results: The result is based on scientific articles from various parts of the world. The authors have chosen to divide the results into main categories: Emotional responses in nurses, Time and resource shortages to support end-life patients, Impactable aspects of the health environment, Communication between nurses and patients and the need for knowledge and training in palliative care. Nurses experience mixed feelings and shared opinions about caring for patients in the end of life and meeting their needs at the end of life, which is due to the nurse's professional experienceConclusion: Nurses experience emotional responses, lack of time and resources, lack of education, and different levels of experience are factors that complicate their work of care at the end of life, which gave feelings of inadequacy. Nurses also felt that communication was difficult, which was mostly based on the fact that nurses felt insecure in their role in working with patients in the final stages of life while nurses with longer experience and those with higher knowledge had no difficulty in meeting these patients.

Syfte : Syfte med denna litteraturstudie var att beskriva anhörigas upplevelser av vården i livets slutskede på särskilt boende. Metod: Litteraturstudien bygger på femton stycken vetenskapliga artiklar som har analyserats och granskats med hjälp av analysmetod enligt Evans (2002). Litteraturstudien genomfördes under våren 2018. Resultat : Dataanalysen av de vetenskapliga artiklarna resulterade i fyra stycken kategorier; Känsla av börda, Önskan att bli sedd, Behov av delaktighet och Behov av stöd. Majoriteten av resultatet baserades på artiklar från Europa. Slutsatser : Mer kunskap krävs när det gäller anhörigas upplevelser av vård i livet slutskede och hur sjuksköterskan kan bemöta anhöriga i detta. De 6 S:n kan vara ett verktyg som kan bidra till planeringen och på så sätt få anhöriga mer delaktiga vilket kan förbättra vården för patienten. / Purpose: The purpose of this literature study was to describe the relatives experience of care in the final stages of life in nursing homes. Method : A literature study that included fifteen scientific articles. Method of analysis according to Evans (2002) were used. The study was conducted during the spring of 2018. Results: Data analysis resulted in 4 categories; Feeling of burden, Desire to be seen, Need for participation and Need for support. The majority of the results were based on articles from Europe. Conclusions: More knowledge is required regarding relatives' perceptions of care in the final stages of life. The 6 S can be a tool that can contribute to planning, thus increasing the number of relatives who can participate and it that way improve the care of the patient.

Background: Each year about 480 children in Sweden receive palliative care and a child’s death has a great impact on everyone involved with the child. Nurses have a responsibility to ensure that the child remains comfortable and experiences dignity until end of life. Caring for children in a palliative stage has shown to be overwhelming for nurses and there is of great importance to determine the nurses own experiences. Aim: The aim of this study was to describe nurses’ experiences of caring for children in a palliative stage. Method: The method used was a literature study with the aim to contribute to evidence based care with an analysis based on qualitative research. Twelve scientific articles were analyzed and three themes and nine subthemes emerged. Results: Relationships were created between the nurses, the children and their families. These relationships made it difficult for the nurses to maintain professional boundaries, which resulted in an emotional impact both during the care and after the child’s death. There were occasions when differences of opinion arose between the nurses and the guardians about the best interests of the child and during these circumstances the nurses needed to advocate for the child. Lack of resources and difficulties in symptom management was also challenging for the nurses during the end-of-life care. Support and additional knowledge was significant to enable further work within the area. Conclusions: Caring for children in a palliative stage is emotionally demanding which makes it difficult for nurses to remain professional. Since nurses have a responsibility to advocate for the children, differences in opinions will occur. Guardians need to be fully informed to make decisions based on the best interests of the child. There is also a need of resources, knowledge and support.

Bakgrund: Palliativ vård består av vård av hela personen när en sjukdom inte längre behandlas. Vården ges med patientens behov och önskemål i fokus. Behovet av palliativ vård kommer att fortsätta växa i förhållande till befolkningens ökade livslängd. Genom att få en djupare kunskap om patienternas erfarenheter skapas en större förståelse för denna patientgrupp. Syfte: Att beskriva patienters upplevelse av palliativ vård. Metod: En litteraturöversikt baserad på 10 vetenskapliga artiklar med kvalitativ design. Resultat: Resultatet presenteras i tre kategorier: Förlorad självbild, Det sociala samspelet samt Transitionen till livets slutskede. Resultatet visar att upplevelsen av palliativ vård är individuell. För många patienter tog det mycket tid och ansträngning att acceptera kroppsliga och sociala förändringar. Slutsats: Resultatet visar att palliativa patienter ofta känner att de förlorat kontroll över sina liv och känner rädsla över att vara en börda för andra. Att tillåta och ta emot hjälp från andra tog tid och ansträngning. Vårdpersonal sågs ofta som en del av familjen, att ha en relation baserad på förtroende och omsorg gav patienterna en positiv upplevelse av palliativ vård. / Background: Palliative care consists of the care of the whole person when a disease is no longer curable. The care is given with the patients’ needs and wishes in focus. The need of palliative care will continue to grow in relation to the increased life span of the population. Through deeper knowledge about patients’ experiences, a greater understanding for this patient group is created. Aim: To describe patient’s experiences with palliative care. Method: A literature-review based on 10 qualitative research articles. Results: The result is presented in three main categories: Lost self-image, Social interaction and The transition to the end-of-life. Results show that the experience of palliative care is individual. For many patients, it took a lot of time and effort to accept bodily and social changes. Conclusion: The result show that many patients experience lost control over their lives and fear that they are a burden to others. To allow and accept help from others took time and effort. Healthcare professionals were often seen as a part of the family, and to have a relationship based on trust and care gave patients' a positive experience of palliative care.

Bakgrund: I Sverige avlider varje år cirka 90.000-100.000 personer. Trettiofem till fyrtio procent av svårt sjuka avlider inne på sjukhus och 40–50% på någon form av hospice. Att vara närstående till någon som är svårt sjuk medför många emotionella svårigheter såsom oro, stress och ovisshet. Sjuksköterskan har en viktig roll då hen genom emotionellt stöd kan lindra onödigt lidande hos närstående.Syfte: Syftet var att beskriva närståendes erfarenheter av emotionellt stöd från sjuksköterskan vid den sena palliativa fasen inom slutenvård samt beskriva skillnader mellan palliativ vård på sjukhus och specialiserad palliativ vård.Metod: Designen var en allmän litteraturstudie med systematisk sökning efter empiriska vetenskapliga artiklar.Resultat: Närståendes erfarenheter delades upp i sex olika kategorier: tydlig och ärlig information gav känsla av lättnad och trygghet, tillgängligheten till sjuksköterska gav känsla av närhet och minskad ensamhet, samtalet gav känsla av att vara sedd och betydelsefull, praktiskt stöd gav känsla av tacksamhet och att bli omhändertagen, egentid och tillgång till privat utrymme gav känsla av ro och bevarad integritet, skillnader mellan palliativ vård på sjukhus och specialiserad palliativ vård.Slutsats: Närståendes erfarenheter visade att sjuksköterskan gav emotionellt stöd då hen gav tydlig och ärlig information, fanns tillgänglig, samtalade med närstående, gav praktiskt stöd samt möjliggjorde egentid och privat utrymme för närstående. Det visade sig att på hospice och liknande palliativa vårdenheter var erfarenheterna övervägande positiva medan erfarenheterna från sjukhus var både positiva och negativa.

This study seeks to investigate fear of death in first-year student nurses. It considers how this might be ameliorated through teaching and learning interventions that involve addressing emotional and spiritual intelligence within the affective domain. Fear of death, for this study, is defined as fear of death and of caring for dying people and their families. A pragmatic paradigm and a mixed method approach were used to explore the feelings and experiences of newly recruited student nurses in relation to fear of death and the care of the dying person and their families. Quantitative and qualitative methods were used to examine the impact of two different interventions intended to reduce the fear of death. A questionnaire was used to measure aspects of fear of death. The students were then randomly allocated to three groups. The members of two of the groups experienced an intervention, either a psychological self-help programme called 'Do Something Different', (Fletcher and Pine, 2009) or a weekly group meeting that explored relationships and the use of spiritual strategies based on Family Constellation theory (Hellinger, 2006). The third group acted as a control. After a period of time in clinical practice, the questionnaire was administered again and the results analysed and interpreted. The relationship between the students' fear of death and their age, previous experiences, ethnicity and spiritual beliefs was explored. Findings indicate that the interventions had a positive influence on reducing the students' fear of death. The qualitative part of the study involved semi-structured interviews with fifteen of the students who had completed both questionnaires. Their experiences of preparation for caring for dying people and of being in an intervention group were discussed. The interviews were analysed using interpretive phenomenological analysis (IPE). Influencing factors from home, such as cultural issues, and from within the clinical context, such as mentorship, were identified. The thesis contributes to nursing education and practice by showing that early preparation for caring for dying people can be effective in reducing fear of death. Results demonstrate that there is value in using strategies to help the student to develop emotional and spiritual intelligence in order to prepare for aspects of dying, before they experience the death of a patient. This preparation enhances the quality of the therapeutic relationship between student and patient. Another outcome is that students need a particular quality of support, at home and in clinical practice and that there are particular implications for Black, Asian and Minority Ethnic (BAME) students. Mentors of students need to be trained to be sensitive to the students' needs when caring for people who are dying. Greater attention to preparation for death and care of the dying is likely to enhance the provision of end of life care and may also reduce attrition in first-year student nurses.

Bakgrund: Inom intensivvården råder en kurativ vårdkultur, målet är att patienter ska botas. Dock sker nästan en femtedel av alla dödsfall i Sverige inom intensivvården. Således är behovet av kvalificerad palliativ vård betydande, men forskning visar att vården i dagsläget har svårt att möta dessa behov. Syfte: Att beskriva sjuksköterskors upplevelser av att vårda patienter palliativt inom intensivvård. Metod: En integrativ litteraturöversikt baserad på tolv kvalitativa vetenskapliga artiklar. Resultat: Tre teman konstruerades: strävan efter att skapa en värdig död, hinder för en värdig död och faktorer som främjar en värdig död. Diskussion: Författarna har utifrån valda delar i Watsons Caring Science omvårdnadsteori i relation med tidigare forskning, diskuterat de fynd de ansåg varit mest intressanta. / Background: The intensive care has a curative caring culture, and the goal is to cure patients. Even so, one fifth of the deaths in Sweden happen within the intensive care. This makes the need for qualified palliative care apparent, though research shows that current care fails to meet these needs Aim: To describe nurses experiences of providing palliative care in an intensive care context. Method: An integrative literature review based on twelve qualitative scientific articles. Results: Three themes were constructed:  striving to create a dignified death, barriers to a dignified death and factors that promote a dignified death. Discussion: Based on selected parts of Watson's Caring Science Nursing Theory and in relation to other research, the results considered to be of highest interest is discussed.