Cerebral vascular accidents (CVAs) rank as the third leading cause of death in Canada with more than 50,000 of these events occurring annually. The evidence base from which to provide end-of- life care to patients dying from a CVA is currently limited, and there is a dearth of research examining the experiences of nurses charged with the responsibility of caring for these patients. In order to begin to address this gap in the literature, a qualitative study, using van Manen’s interpretive phenomenology was conducted to examine and describe the lived experiences of nurses working on an acute neurosciences unit in a tertiary hospital. Nine nurses were interviewed initially, and two nurses participated in follow-up interviews to confirm the interpretation of the data. This manuscript will discuss the essence of nurses’ lived experience in caring for these patients, as well as implications for education, practice, and future research.

Palliativ vård innebär att sjukdomen inte kan botas och beskrivs ibland som vård i livets slutskede. Syftet med studien var att beskriva sjuksköterskors upplevelse av arbete med vuxna patienter som är i behov av palliativ vård, att beskriva hur sjuksköterskor kan hantera svåra situationer som kan uppstå i arbetet med vuxna patienter i den palliativa vårdens senare fas samt att granska de utvalda artiklarnas urvalsmetod och undersökningsgrupp. Metoden är en litteraturstudie med en deskriptiv design. Resultatet visade att sjuksköterskorna upplevde en djupare relation med patienten än den vanliga sjuksköterska-patient relationen. Det upplevdes viktigt med bra kommunikation med patienten, vilket sjuksköterskorna strävade efter. Känslor som sjuksköterskan kunde känna var maktlöshet, frustration, stolthet och tillfredställelse. Det största upplevda ansvaret var att patienten ska få dö med värdighet på ett fridfullt sätt. Sjuksköterskorna upplevde att det var en viktig strategi att kunna stänga av från arbetet. Mötet med patienter får sjuksköterskan att fundera över existentiella frågor. Slutsatserna är dels att den valda omvårdnadsteorin stämmer väl in i sjuksköterskornas upplevelser av den palliativa vården och den andra slutsatsen är att sjuksköterskorna praktiserar vården både utifrån definitionen på vad palliativ vård är samt utifrån de fyra hörnstenarna. / Palliative care means that the patient suffer from an incurable disease and is sometimes described as end-of-life care. The aim of the study was to describe the nurses experience in working with adult patients in need of palliative care, describe how nurses handle difficult situations that can arise while working with adult patients in the later stage of palliative care, as well as review selection method and the sample of the chosen articles. The method is a literature review with a descriptive design. The result showed that the nurses experienced a deeper relation with the patient than that of the normal nurse-patient relation. It is important with a good communication with the patient, something that the nurses strived towards. The feelings nurses expressed where a sense of powerlessness, frustration, pride and a sense of fulfilment. The largest experienced responsibility was that the patient should be allowed to die with dignity in a peaceful manner. The nurses’ ability to leave the work at the workplace was an important strategy for the nurses when it comes to their wellbeing. Meeting with the patients made the nurses contemplate over existential questions. The conclusions are that the chosen nursing theory matches the nurses’ experiences of palliative care and that the nurses practice their care based on the definition of palliative care and the four cornerstones of palliative care.

Background: In the background section the following terms are described: Palliative care and holistic view, care at the end-of-life, ethical problems in the end-of-life care and ethical problem and ethical dilemma. Aim: The purpose of this literature review was to describe nurses’ experiences of ethical problems in the end-of-life care of patients. Method: A literature review was selected as a method in this study based on eightscientific articles. Articles were reviewed and analyzed critically by the author. Travelbees’ theory (1971) “human- to- human relationships” was selected as a theoretical basis. Results: The result presents six themes as follows: Decision-making, ineffective treatments and therapies, insufficient communication, the lack of cooperation, inadequate respect for patient’s autonomy and uncertainty in caring role. These themes present how nurses deal with end-of-life care and in which situations ethical problems arise. Discussions: The result was discussed in relation to Travelbees’ theory (1971) “human-to-human relationships”. Nurses’ different experiences according to their different responsibilities such as insufficient communication and cooperation, decision-making processes, uncertainty in caring role and inadequate respect for patients’ autonomy were discussed. / Bakgrund: I bakgrunden beskrivs följande termer: Palliativ vård och holistiskt synsätt, vård vid livets slutskede, etiska problem i livets slutskede och definitionerna av etiskt problem och etiskt dilemma. Syfte: Syftet med denna litteraturöversikt var att beskriva sjuksköterskors upplevelser av etiska problem i vården av patienter i livets slutskede. Metod: En litteraturöversikt valdes som metod i denna studie som bygger på åtta vetenskapliga artiklar. Artiklarna granskades och analyserades av författaren. Travelbees teori (1971) “human-to-human relationships” valdes som en teoretisk grund. Resultat: Resultatet presenterar sex teman enligt följande: Beslutsfattande, ineffektiva behandlingar och terapier, otillräcklig kommunikation, bristande samarbete, otillräcklig respekt för patientens autonomi och osäkerhet i vårdande roll. Dessa teman presenterar hur sjuksköterskor hanterar vård vid livets slutskede och i vilka situationer etiska problem uppstår. Diskussion: Resultatet diskuterades utifrånTravelbees’ theory (1971) “human- to- human relationships”. Sjuksköterskors olika erfarenheter i enlighet med deras olika ansvarsområden såsom otillräcklig kommunikation och samarbete, beslutsprocesser, osäkerheten i vårdanderoll och bristande respekt för patientens autonomi diskuterades.

Bakgrund: Omvårdnad är sjuksköterskans spetskompetens och innebär ett stort ansvar vid vård av patient i livets slutskede. Här ställs sjuksköterskan inför särskilda prövningar då patientens önskan och professionens etiska förhållningssätt inte alltid överensstämmer. De flesta inom professionen kommer högst troligtvis vårda en patient i livets slutskede. Syfte: Att beskriva sjuksköterskans upplevelse av att vårda palliativa patienter i livets slutskede.   Metod: Kvalitativ litteraturöversikt med induktiv ansats, baserad på tio artiklar. Artiklarna framtogs från databaserna CINHAL with full text och PSYKinfo, publicerade mellan 2008 – 2018.  Artiklarna analyserades och sammanställdes enligt Fribergs femstegsmodell. Resultat: Teman som framkom var sjuksköterskans olika emotionella upplevelser samt upplevelser som påverkar omvårdnaden av patient i livets slutskede. Sjuksköterskan upplevde vård av patient i livets slutskede på många olika sätt. Exempel på dessa var ett behov utav copingstrategier, reflektion över sin egna dödlighet och emotionell påverkan. Olika faktorer som stress och kommunikationssvårigheter påverkade sjuksköterskans upplevelse. Slutsats: Vårdsituationen har visat sig vara känslomässigt utmanande och väcka existentiella funderingar hos sjuksköterskan. Trots en utmanande situation på många sätt ansågs utövandet av vården vara ett privilegie och något meningsfullt hos sjuksköterskan.

This thesis analyses doctors empathising with patients in palliative care interactions. Historically, palliative care has treated not only patients physical pain but their emotional pain, as well. Although the importance of empathy (defined for the purposes of this thesis as The doctor s expressed understanding of the patient s emotional experience ) has been emphasised in this environment, however, there has been no prior research showing how palliative care doctors actually empathise with their patients in practice. Drawing upon 37 recordings of doctor-patient consultations collected in a UK hospice, this thesis addresses this omission by using conversation analysis (CA) to analyse several facets of empathy in this environment. The analysis begins in chapter four by considering the ways in which doctors can empathise with patients. It shows how doctors can empathise semantically, either by reworking what the patient has themselves said or by showing understanding on a normative basis. It also considers non-semantic ways of displaying empathy (e.g. response cries), showing how these are fundamentally different to the semantic type of empathic display. Overall, this chapter shows that empathy is not restricted to particular formats but, rather, is dependent upon the content of the doctor s turn. The analysis then moves on consider the wider context of doctors empathic responses. Chapter five, first of all, analyses cases where patients emotions become the topic of the interaction, either because the doctor asks about them directly or because the patient raises an emotionally-implicative topic. The emphasis here is on how palliative care doctors can talk to patients about, and empathise with, their emotions without necessarily having to do anything about those emotions. Chapter six then focuses on cases where patients emotions are discussed alongside the more task-driven aspects of the consultation, either because the patient s physical condition has had an emotional impact on them or because their presenting problem is inherently emotional. In contrast to chapter five, then, the source of the patient s emotions here can be treated by the doctor without the emotions being topicalised. The final two chapters of the analysis focus on doctors empathising with patients not in response to something that the patient has said but in the service of some task. Chapter seven shows how doctors can empathically bridge the gap between their medical and the patient s experiential perspectives at moments where it becomes clear that there is a disparity between the two. These include moments where the patient expresses expectations that go beyond what can realistically be provided, moments where the patient might take offence at the doctor s advice and moments where the doctor must reassure patients about their symptoms without seeming to criticise their emotional responses to those symptoms. Chapter eight, meanwhile, shows how doctors can empathically demonstrate that their practice is being driven by a due consideration of the patient s feelings. Specifically, it shows how doctors can draw upon patients feelings in helping them come to a decision about a treatment, cite those feelings when accounting for a treatment that they have recommended and frame a difficult topic as an outgrowth of sentiments that the patient has already expressed. In conclusion, this thesis shows how empathy is not clearly demarcated in palliative care. While there are cases where patients emotions are discussed and empathised with for the sake of discussing and empathising with them, more commonly, empathy and emotion are interwoven alongside and into the task-driven aspects of consultations. This thesis thus shows the interactional manifestation of palliative care s underlying philosophy, with patients emotional pain addressed alongside their physical pain in an integrated, holistic way.

The acute care setting is designed to provide short-term care for people who require treatment for a severe episode of acute illness and exacerbations of chronic conditions. Yet, more than half of Canadians die in acute hospitals every year. Evidence shows that nurses in acute care units feel limited in their ability to provide quality end-of-life care due to a variety of factors. As a result, the needs of patients that are dying are often overlooked, which can cause them to experience a loss of identity and control, as well as suffering at the end-of-life; a unique time in one’s life trajectory marked by significant changes in personhood. Personhood is the philosophical underpinning of the frequently used concept ‘person-centered care’ – one of the fundamental ideologies of nursing and a central concept in palliative care. An interpretive description design was used to explore the following research question: What do nurses’ stories reveal about the ways in which they engage, or fail to engage, with personhood in end-of-life care in acute care units? To appreciate the culture in which participant stories were situated, a literature review of acute care culture, end-of-life care in acute care units, and the concept of personhood was conducted. Eight nurses from an acute medical-surgical ward of a tertiary care hospital in Eastern Ontario were interviewed for this study. Thematic analysis was used to analyze the data, which elucidated tensions between participants’ ability to enact ethical end-of- life care reflective of their values and the contextual constraints of working in a culture of biomedicine. Exploring these tensions provided insight on the nuances and complexities of navigating ethical end-of-life care in an acute care setting as well as implications for nursing practice, education, and research with particular attention to promoting moral communities in acute care that value personhood and biomedicine equally.

Background Nurses work to promote health, prevent disease, restore health and relieve suffering. However, when the patient transitions into end of life care, the goal is no longer to cure, but to relieve. End-of-life care is about seeing the patient and helping them move on by doing what favors the patients’ well-being. Aim The aim of this study was to describe how nurses can preserve the patients’ dignity in end of life care. Method This study is based on a method to contribute to evidence-based nursing with foundation in analysis of qualitative research. 7 qualitative and 2 articles with mixed methods were analyzed using a five step model described by Friberg. Results Through the analysis three main themes and five sub-themes were developed. The main themes were: Involving the patient, Preserving the patient’s quality of life, Seeing the patient. Conclusion Through the actions performed by the nurse, dignity can be preserved. By protecting the patients’ integrity and autonomy through a person-centered care, the best conditions for giving a worthy death are created.

Orientador: Antonio José Maria Cataneo / Resumo: Introdução: O implemento de cuidados paliativos (CP) está associado a melhor qualidade de vida do paciente em estado terminal (PET), buscando reduzir o sofrimento de todos os envolvidos no processo de morte. Justificativa: Acredita-se que PET não deveria estar internado e nem morrer em UTI. Objetivos: Determinar se a instalação de equipes de CP podem diminuir o tempo de internação e a mortalidade na UTI de PET. Métodos: Revisão sistemática de artigos que compararam PET internados em UTI que receberam cuidados de fim de vida após a instituição de uma equipe de CP (intervenção) com aqueles que receberam os cuidados quando ainda não havia sido instituída a equipe de CP (controle). Os desfechos analisados foram o tempo de internação em UTI apresentado pela diferença de média com o correspondente IC a 95%, mortalidade em UTI apresentado como razão de risco com o correspondente IC a 95%, e qualidade de vida. Foram pesquisadas as bases de dados: PUBMED, LILACS, SCOPUS, EMBASE e Cochrane CENTRAL. Resultados: Após leitura de títulos e resumos de 399 artigos, foram selecionados 27 estudos para a análise de texto completo, e finalmente excluídos 19, restando 8 artigos para inclusão, envolvendo 7846 participantes. Sete estudos foram realizados nos Estados Unidos e um na Austrália. Foi realizada metanálise para o tempo de internação em UTI, utilizando quatro estudos, que resultou em redução de aproximadamente 2,5 dias no tempo de internação com a aplicação da intervenção: media -2,44 dia... (Resumo completo, clicar acesso eletrônico abaixo) / Abstract: Introduction: The palliative care (PC) procedure is associated with better quality of life for terminally ill patients (TIP), in order to reduce the suffering of everyone involved in the death process. Rationale: it is believed that TIP should not be admitted nor die in the ICU. Objectives: To determine if the installation of CP teams can reduce the length of stay and mortality in ICU TIP. Methods: A Systematic review of articles comparing TIP in ICU beds who received end of life care following the imposition of a team of PC (intervention) to those who received care when they had not yet been introduced the PC team (control). The outcome measures were the time of ICU admission presented by average difference with the corresponding 95% CI, mortality in ICU presented as risk ratios with corresponding 95% CI and quality of life. Databases were searched: PUBMED, LILACS, Scopus, EMBASE and Cochrane CENTRAL. Results: After reading titles and abstracts of 399 articles, 27 studies were selected for full text analysis, and finally 19 were excluded, leaving 8 articles for inclusion, involving 7846 participants. Seven studies were performed in the United States and one in Australia. Meta-analysis was performed to the ICU length of stay, using four studies, which resulted in a reduction of approximately 2.5 days in the length of stay with the application of intervention: Media -2.44 days (CI -4.41 to -0 48) p = 0.01, I2 = 86%. It was also performed a meta-analysis of mortality in ICU... (Complete abstract click electronic access below) / Mestre

Flertalet sjuksköterskor upplever svårigheter i att vårda döende patienter. Olika känslor uppkommer och varierar beroende på tidigare erfarenhet inom området. För att patienten ska dö med värdighet krävs det att livskvaliteten upprätthålls ända fram till dödstillfället. Problem i omvårdnaden synliggörs när sjuksköterskan upplever att egen erfarenhet, kunskap och förståelse inte är tillräcklig. Det kan resultera i kommunikationssvårigheter, osäkerhet och en otillräcklig helhetssyn av patienten. Syftet med studien är att undersöka hur sjuksköterskor utan erfarenhet inom palliativ vård upplever vårdandet av patienter i livets slutskede. Metoden som användes var allmän litteraturbaserad metod. Nio vårdvetenskapliga studier ingår i resultatet och tre teman kunde urskiljas: Erfarenhet av döden i vårdande kontext, kommunikation och sjuksköterskans upplevelse av döden. Ur dessa teman framkom sju subteman: att bli känslomässigt påverkad, erfarenhet av vårdande i livets slut, att kommunicera med patient och anhöriga, att kommunicera med kollegor, när kommunikationen är en utmaning, den goda döden, den dåliga döden. Resultatet påvisar vikten av kommunikation, erfarenhet, ärlighet och öppenhet i vårdandet av patienten i livets slutskede. Utifrån resultatet diskuteras utvalda upplevelser som vårdandet i livets slutskede medför. Detta gäller sjuksköterskans känslor, erfarenhet, förmåga att kommunicera samt sjuksköterskestudenter och handledares perspektiv. Genom reflektion kan ökad förståelse och därmed ökad kunskap uppnås. Sammantaget är det många faktorer som behövs för att vårdandet i livets slutskede ska vara av god kvalitet.

Bakgrund: Palliativ vård bygger på ett förhållningssätt med syfte att lindra lidande och öka livskvaliteten under den sista tiden i livet. Sjuksköterskans uppgift i den palliativa vården är att utifrån en personcentrerad vård skapa förutsättningar för en god död. Trots att det finns möjlighet för vård i hemmet eller på palliativ vårdenhet händer det att patienter i ett sent palliativt skede ändå söker sig till akutmottagningen. Syfte: Att beskriva sjuksköterskors erfarenheter av att vårda patienter i ett sent palliativt skede, på akutmottagning. Metod: En litteraturöversikt har gjorts för att besvara syftet. Elva vetenskapliga orginalartiklar har inkluderats och dessa har granskats, analyserats tematiserats för att urskilja likheter och skillnader. Resultat: Två huvudteman och sex underteman identifierades. Det första huvudtemat var Sjuksköterskans erfarenheter av faktorer som utgör hinder för god palliativ vård, med tillhörande underteman vårdmiljön som ett hinder, avsaknad av nödvändiga resurser, kurativ mentalitet och anhöriga som ett hinder för god palliativ vård. Det andra huvudtemat var sjuksköterskans erfarenheter av faktorer som främjar en god palliativ vård, med tillhörande underteman en underlättande vårdmiljö och resursers betydelse för god palliativ vård. Diskussion: Diskussionen framhäver vårdkulturens betydelse för den palliativa vården på en akutmottagning. Författarna diskuterar tre fenomen, resurser, kurativ mentalitet och akutmottagningens utformning i relation till Katie Erikssons caritativa vårdteori.