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.

SAMMANFATTNING Bakgrund: Sjuksköterskor inom palliativ hemsjukvård förväntas idag arbeta med ett personcentrerat förhållningssätt gentemot patienterna. Genom att skapa en relation präglad av omtanke och värme med patienten kan sjuksköterskan tillgodose patientens såväl yttre som inre behov och sörja för ett värdigt liv. Att stötta patientens autonomi ses som en av de viktigaste uppgifterna för sjuksköterskor inom palliativ hemsjukvård. Emellertid är autonomi ett komplext begrepp. Aspekter relaterade till beslutsfattande, delaktighet, självständighet, relationer och känsla av värdighet bör beaktas i förhållande till patientens autonomi. Patienten ska involveras i vården och har rätt att vara delaktig i beslutsfattande, men vårdorganisationen är inte alltid anpassad till detta. Förmågan till beslutsfattande bland patienterna är också individuell och viljan att vara delaktig varierar. Därtill är svårt sjuka patienter ofta beroende av andra för att kunna hantera sin vardag. Syfte: Att beskriva sjuksköterskors upplevelser av hinder och förutsättningar för att stötta patienters autonomi i en palliativ hemsjukvårdskontext. Metod: En kvalitativ induktiv studie med deskriptiv design utfördes och data samlades in medelst fokusgrupper på en avancerad hemsjukvårdsenhet i Stockholm mellan februari och mars 2015. Data analyserades med manifest innehållsanalys. Resultat: Studien visar att sjuksköterskor inom palliativ hemsjukvård identifierar ett flertal hinder och förutsättningar för att stötta patientens autonomi. Fyra kategorier identifierades i resultatet: Patienten, Sjuksköterskan, Organisationen samt Palliativ vård. Resultatet beskriver hur patientens individuella egenskaper, verktyg och resurser samt relationer till andra avgör till vilken grad patienten kan vara autonom. Den enskilda sjuksköterskans kompetens och förmåga att skapa trygghet i relationen med patienten, genom att ta ansvar, ge fullgod och anpassad information och arbeta personcentrerat, skapar förutsättningar för patientens autonomi i vardagen och i förhållande till sjukvården. Därtill är sjuksköterskan i sin tur beroende av en organisation som understödjer personcentrerad vård och underlättar etisk medvetenhet och samsyn i palliativ vårdfilosofi. Slutsats: De slutsatser som kan dras av resultatet är att sjuksköterskor inom palliativ hemsjukvård anser att patientens autonomi är beroende av patientens individualitet och relationer till andra, sjuksköterskans relationsskapande och samordnande kompetenser, vårdenhetens organisation och resursfördelning samt i viss mån sjukvårdspersonalens kunskap om och följsamhet till den palliativa vårdens grunder.

Bakgrund: Att vårda en närstående med livshotande sjukdom innebär ett stort ansvar och uppgiften kan både upplevas svår och tung men kan även vara en källa till tillfredställelse då man kan göra något för sin närstående. Flera studier har visat att situationen kan vara förknippad med negativa konsekvenser för närståendevårdaren. Förberedelse för att vårda är en faktor som visat sig ha samband med mer positiva konsekvenser av att vårda. Syfte: Att beskriva närståendes erfarenhet utifrån berättelser om förberedelse för att vårda sin partner i hemmet under pågående palliativ vård Metod: Kvalitativ intervjustudie, kvalitativ innehållsanalys. Deskriptiv design. Resultat: Analysen utmynnade i ett övergripande tema, Förberedelse i medvetenhet om döden och två teman; Strävan efter något att förhålla sig till i förberedelsen för det värsta; Förberedelse för att vårda en partner i livets slut- en utmaning ett ansvar och en möjlighet. Diskussion: Förberedelse för att vårda en partner i livets slut tolkades som en transition med betydelsen förberedelse i medvetenhet om döden. Två sätt att förhålla sig till döden och framtiden fanns; att skjuta upp förberedelsen eller att förbereda sig. De närstående förberedde sig trots ovisshet genom strävan efter något att förhålla sig till. Förberedelse för att vårda beskrevs som ett ansvar, en utmaning och en möjlighet. Det upptäcktes efter hand vad vårdarrollen och den förändrade relationen skulle innebära. Detta kunde upplevas antingen positivt eller negativt. / Background: Caring for a family member with a life limiting illness is a big responsibility and it can be experienced as difficult and as a burden but it can also be a source of satisfaction doing good for a loved one. Studies have shown that the situation can be associated with negative consequences for the caregiver. Preparedness is a factor that is associated with positive outcomes of caregiving such as higher levels of wellbeing, less anxiety and higher rewards of caregiving. Aim: To describe caregivers experiences from their stories about preparedness when caring for a partner during palliative care. Method: The study design was descriptive using qualitative in depths interviews and qualitative content analysis. Result: One overarching theme emerged which was Preparedness for caregiving in awareness of death, and two themes witch were Striving for something to relate to when preparing for the worst and Preparedness for caregiving-challenges, responsibilities and possibilities. Discussion: The event could be seen as a transition that caused a major change in the lives of the participants influencing meaning, roles and actions. The overarching theme Preparedness for caregiving in awareness of death could be seen as the meaning influencing the transition and a change in values and priorities in the lives of the participants and in different ways of dealing with the situation. Nurses have an important role and may through a person centered approach understand and increase preparedness through knowing what the transition means for the caregiver and where in the process he or she is.

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No. of bitstreams: 1 silva_nl_me_bot.pdf: 4398926 bytes, checksum: cf2b9c8749e4ed2d3ab886f6ee815b27 (MD5) Previous issue date: 2017-11-10 / Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq) / Pró-Reitoria de Pesquisa (PROPe UNESP) / Introdução: A comunicação de más notícias envolve situações como a comunicação sobre diagnósticos que ameaçam a vida, a deterioração clínica ou mesmo a morte de um paciente. A forma como esse tipo de informação é transmitido pode ter um impacto profundo na compreensão dos pacientes e de seus familiares sobre a doença, sobre sua capacidade de lidar com a nova situação e pode amplificar ou diminuir o seu sofrimento. Várias pesquisas relativas à comunicação de más notícias nos cuidados de saúde enfatizam a importância de um ambiente físico apropriado para a condução desse processo. Todavia não foram encontrados estudos que tenham avaliado os espaços físicos onde essa comunicação se dá. Portanto, propôs-se o presente projeto de pesquisa com o objetivo de avaliar a presença e as características de ambientes apropriados para a comunicação de más notícias em hospitais escola do estado de São Paulo. Métodos: Todos os hospitais de ensino elegíveis foram convidados a participar do projeto. Uma vez que os hospitais aceitassem participar, era agendada uma visita guiada aos seguintes setores de cada hospital: Unidades de Terapia Intensiva (UTI), antessalas do centro cirúrgico, enfermarias de clínica médica, cirurgia, oncologia, neurologia, geriatria, pediatria e cuidados paliativos. Resultados: Foram convidados 30 hospitais para o estudo, dos quais 15 concordaram em participar. De 156 setores hospitalares visitados havia apenas 15 (9,6%) com salas para comunicação privada entre profissionais de saúde e pacientes/familiares. Em 98 (62,8%) dos setores visitados não havia sequer salas improvisadas que poderiam ser utilizadas para tais comunicações. Conclusão: Na maioria dos setores dos hospitais de ensino visitados há carência de espaços apropriados para comunicação de más notícias ou conversas privadas sobre questões sensíveis com pacientes ou familiares. A ausência de tais ambientes impõe barreiras à comunicação efetiva e empática entre profissionais de saúde e pacientes/familiares. O ambiente físico dos hospitais de ensino transmite mensagens importantes e silenciosas aos alunos, profissionais de saúde e pacientes sobre o que é valorizado ou não dentro dessas instituições. Refletir de forma crítica sobre a forma como os hospitais organizam seu espaço pode inspirar a reestruturação desses ambientes de acordo com os valores e metas pretendidas dessas instituições. / Introduction: The breaking of bad news involves situations such as the communication about life-threatening diagnoses, the clinical deterioration or even the demise of a patient. The way in which those types of information are conveyed may have profound impact in the under-standing of patients and families about the illness, in their ability to cope with the new situa-tion, and may amplify or lessen their suffering. Several guidelines concerning the communi-cation of bad news in healthcare emphasize the importance of an appropriate physical envi-ronment for the conduction of that process. However there are no studies about the physical environments where such communication processes take place. Therefore we proposed the present research to assess the presence and the characteristics of appropriate places for the communication of bad news within teaching hospitals in the state of Sao Paulo. Methods: All eligible teaching hospitals of state of São Paulo were invited to participate in the project. Once one of those hospitals accepted to participate, we scheduled a guided visit to the following sectors of each hospital: Intensive Care Units (ICU), access points to operating suites, Internal Medicine, General Surgery, Oncology, Neurology, Geriatrics, Pediatrics, and Palliative Care wards. Results: Thirty teaching hospitals were invited for the study and 15 agreed to participate. Out of 156 hospital sectors visited there were only 15 (9.6%) rooms for private communications between professionals and patients/families. In 98 (62.8%) of the visited sectors there were not even improvised rooms available for such communications. Conclusion: Our results show that within most sectors of the teaching hospitals that we visited there is a lack of appropriate spaces for the breaking of bad news and other conversations about sensitive issues with patients or their family members. The absence of such rooms imposes barriers to effective and empathetic communication between healthcare professionals and patients and/or their families. The physical environment of teaching hospitals conveys im-portant soundless messages to students, healthcare professionals and patients about what is valued or not within those institutions. Reflecting critically about the way hospitals organize their space may inspire the redesign of those environments according to the intended values and goals of those institutions.

O estudo emergiu da minha experiência profissional como enfermeira de um hospital especializado em oncologia, no qual me deparei com crianças internadas e consideradas fora de possibilidade de cura atual acompanhadas de um familiar. É considerado fora de possibilidade de cura atual, o paciente para o qual foram esgotados todos os recursos atuais conhecidos para sua cura, a incorporação dessa concepção de cuidar, possibilitou o desenvolvimento do cuidado paliativo. Cuidados paliativos são os cuidados ativos totais de pacientes cuja doença não responde a um tratamento curativo. O objetivo do cuidado paliativo é alcançar a melhor qualidade de vida para os pacientes e suas famílias. O objeto de estudo desta pesquisa foi à ação de cuidado do enfermeiro à criança hospitalizada portadora de doença oncológica e fora de possibilidade de cura atual. Tendo como objetivo: analisar compreensivamente o cuidado do enfermeiro à criança hospitalizada portadora de doença oncológica fora de possibilidade de cura atual. Estudo de natureza qualitativa, desenvolvido com o apoio da fenomenologia sociológica de Alfred Schutz por possibilitar a apreensão da ação desse cuidar, como uma conduta humana, num processo contínuo a partir de um projeto pré-concebido. Os sujeitos do estudo foram 12 enfermeiros que trabalham nas enfermarias de oncologia e hematologia do setor de internação pediátrica de um hospital público federal especializado em oncologia, localizado no município do Rio de Janeiro. Esta pesquisa foi aprovada pelo Comitê de Ética (n 43-11). A apreensão das falas deu-se por meio de entrevista fenomenológica guiada pela seguinte questão orientadora: Quando você cuida da criança em tratamento oncológico fora de possibilidade de cura atual, O que você tem em vista? A análise compreensiva mostrou duas categorias concretas do vivido emergidas das falas dos sujeitos da pesquisa. São elas: conforto e minimizar a dor. O estudo possibilitou entender que ao cuidar da criança considerada fora de possibilidade de cura atual o enfermeiro desenvolve suas ações na perspectiva de confortar e minimizar a dor da criança. Neste contexto, também direciona o seu cuidar para o familiar ali presente, promovendo apoio e ajuda, estabelecendo uma relação de confiança construída em função do longo período de hospitalização que ocorre nas doenças oncológicas. Nesse sentido, o enfermeiro se volta para o familiar como foco central de sua ação de cuidar, com o intuito de apoiá-lo nesse momento especial de sofrimento pela doença de sua criança. A criança deixa de ser o centro das atenções de cuidar que passa, então, a ser o familiar de cada criança. / The study emerged from my professional experience as nurse of a specialized hospital in oncology, in which I was faced with hospitalized children and considered out of present cure possibility accompanied of a familiar. A patient is considered out of present cure possibility when all the present resources known for its cure were used up, the incorporation of this care conception made possible the development of the palliative care. Palliative care is total active care of patients whose disease does not respond to a curative treatment. The objective of the palliative care is to achieve the best quality of life for the patients and theirs families. The study object of this research was the action of the nurses care to the hospitalized child carrier of oncologic disease and out of present cure possibility. It has as objective: analyze comprehensively the nurse s care to the hospitalized child carrier of oncologic disease out of present cure possibility. Study of qualitative nature, developed with the support of the Alfred Schutzs sociological phenomenology of Alfred Schutz due to making possible the action apprehension of this care, as a human conduct, in a continuous process from a preconceived project. The subjects of the study were 12 nurses who work in the nurseries of oncology and hematology of the pediatric hospital unit of a federal public hospital specialized in oncology, situated in the municipality of Rio de Janeiro. This research was approved by the Research Ethical Committee (n 43-11). When you give care to the child under oncologic treatment out of present cure possibility. What do you have in view? The comprehensive analysis showed two concrete categories of the lived emerged from the speeches of the research subjects. Are they: to comfort and minimize the pain. The study made possible to understand that when giving care to the child considered out of present cure possibility the nurse develop its actions in the perspective of comfort and minimize the child s pain. In this context he also address its care to the familiar from there, promoting support and aid, establishing a confidence relation constructed in function of the long period of hospitalization that occurs in the oncologic diseases. In this sense, the nurse turns to the familiar as central focus of its action of care, with the purpose of support it in this special moment of suffering due to the disease of its child. The child stops being the center of attention of care that starts to become, then, the familiar of each child.

Bakgrund: Cirka 80 procent av de som dör i Sverige är i behov av palliativ vård. Palliativvård ska präglas av en helhetssyn och patienten ska stå i centrum. Symtomlindring, kommunikation och interaktion, samarbete och stöd till de närstående styr palliativvården. Syfte: Att beskriva närståendes upplevelse av att ha en palliativvårdsbedömd person som bor och vårdas i hemmet. Metod: En litteraturöversikt med induktiv ansats där 18 kvalitativa artiklar analyserades. Resultat: I resultatet framkom tre kategorier, ’Vilja patientens bästa’, ’Närstående påverkades av vården’ och ’Sociala och existentiella faktorers påverkan på närstående’. Under dessa framkom även åtta subkategorier, ’ Motiverad att vårda’, ’Värna om patienten’ ’Negativa konsekvenser och känslor’, ’Positiva påföljder’, ’Utmaningar och hanterbarhet’, ’Missnöje med vården’, ’Stödjande faktorer’ och ’Hemmet som vårdplats’. Slutsats: Att vara närstående till en person som vårdas i hemmet gav upphov till både positiva och negativa känslor och upplevelser. Litteraturöversikten illustrerar hur de närstående vill blir förstådda och bekräftade och värderar bra kommunikation hos sjuksköterskorna högt. / Background: About 80 percent of those dying in Sweden need palliative care. Within palliative care the patient is supposed to be in the center of attention and a holistic view during caring. Symptom relief, communication and interaction, cooperation and family support are the foundation of palliative care. Aim: To describe a relative’s perspective of having a relative within palliative care at home. Method: A literature review with an inductive approach. 18 qualitative articles were analyzed. Results: In the result three categories emerged, ‘Wanting the best for the patient’, ‘Relatives were affected by the care’ and ‘Social and existential factors affecting the relative’. Under them eight subcategories emerged, ‘Motivated to care’, ‘Caring for the patient’, ‘Negative consequences and feelings’, ‘Positive results’, ‘Challenges and manageableness’, ‘Dissatisfaction with the care’, ‘Supporting factors’ and ‘Home as care facility’. Conclusion: To be a relative to a person being cared for at home gave rise to both positive and negative feelings and experiences. The literature review illustrates how the relatives want to be understood and validated and how they valued good communication with the nurses.

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.

Bakgrund Vårdnadshavarens delaktighet i deras barns vård är idag en självklarhet, både för barnsjuksköterskan och samhället men även för familjen själva. Inte minst i samband med pediatrisk palliativ vård, delaktighet i vården har påvisats bidra till en positiv bearbetning av den svåra sorgen som ett barns död innebär. I begreppet familj inkluderas även syskon och andra närstående, men de är inte lika självklara att vara delaktiga i den pediatriska palliativa vården. Familjefokuserad omvårdnad syftar till att inkludera alla familjemedlemmar med beaktande till deras egna önskemål, eftersom familjen är en enhet som ständigt påverkar varandra. Syskon som har en bror eller syster som dör under barndomen har en ökad dödlighet, detta bör barnsjuksköterskan ta till beaktning under och efter den pediatriska palliativa vården. Syfte Att beskriva syskons upplevelser av pediatrisk palliativ vård i samband med en brors eller systers död. Metod En litteraturstudie baserad på 16 stycken kvalitativa studier av hög och medelhög kvalitet. Kvalitativ innehållsanalys med induktiv ansats tillämpades som dataanalys. Resultat I resultatet framkom huvudkategorierna behovet av information, behovet av delaktighet, behovet av stöd och livet efter döden med subkategorier, utifrån dessa framkom den övergripande kategorin vara delaktig i mitt syskons liv och död. Slutsats Syskon är unika individer med behov av att vara delaktiga i den pediatriska palliativa vården och vid en brors eller systers död. Genom att tillämpa familjefokuserad omvårdnad kan hälso- och sjukvården möjliggöra en inkluderande miljö för syskonen och bidra till en bättre förberedelse och bearbetning av sorgen. / Background It is important that guardians are included in the care of their child. This is essential in the pediatric palliative care, participation has been shown to contribute to a positive treatment of the severe grief with a child's death. A family includes siblings and other relatives, but they are not as self-evident as to be involved in the pediatric palliative care. Family-focused nursing aims to include all family members with due regard to their own wishes, as the family is a unit that constantly affects each other. Siblings who have a brother or sister who dies during childhood have an increased mortality, which the pediatric-nurse should consider during and after the pediatric palliative care. Aim To describe siblings’ experiences of pediatric palliative care in connection with the death of a brother or sister. Method A literature study based on 16 qualitative studies of high and medium quality. Qualitative content analysis with inductive approaches were used to analyse the data. Results The generic categories that emerged from the results were the need for information, the need for participation, the need for support and life after death with sub-categories, from which the main category appeared to be involved in the life and death of my sibling. Conclusion Siblings are unique individuals who need to be involved in the pediatric palliative care and at the death of a brother or sister. By applying family-focused nursing, healthcare can provide an inclusive environment for the siblings and contribute to better preparation and treatment of grief.

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.

Made available in DSpace on 2015-12-06T23:44:32Z (GMT). No. of bitstreams: 0 Previous issue date: 2006 / O estudo da vida humana no seu final tornou-se uma questão de primeira grandeza em nossa sociedade atual, principalmente para os profissionais da saúde. Há indicadores inquietantes em relação ao cuidado do sofrimento de final de vida. Este estudo trata de algumas questões fundamentais relacionadas com a filosofia dos Cuidados Paliativos e propõe uma educação dos alunos de graduação através de cursos de Cuidados Paliativos com o objetivo de criar uma atitude humanitária dos futuros profissionais em relação àquele que está morrendo. A esperança está na intervenção na formação dos profissionais da saúde, na reformulação curricular que contemple esta visão antropológica, para além da formação tecnocientífica necessária, e na implementação da filosofia de Cuidados Paliativos. Para fundamentar a discussão e caracterizar a formação do profissional de saúde frente às novas propostas educacionais, buscou-se na literatura discussões sobre a formação destes profissionais e o cuidado do paciente fora de recursos de cura, porém não fora de recursos sintomáticos. Para obter estes subsídios a metodologia adotada combina a revisão sistemática da literatura nacional e internacional produzida na área, com a pesquisa empírica, por meio da aplicação de questionário a uma equipe multiprofissional, atuante em Cuidados Paliativos dentro de uma instituição de ensino. O estudo foi desenvolvido sob uma abordagem qualitativa. Os profissionais sujeitos da pesquisa contribuíram na identificação de problemas e oferecendo sugestões. Com base nos resultados, desvelou-se a necessidade urgente e emergente na área da saúde de capacitar os profissionais de saúde a enfrentarem o cuidado a pacientes fora de recursos de cura por meio de uma educação continuada fundamentada no conhecimento do processo de morte e morrer. / The study of human life at its end has become a central issue in our society, especially for health workers. There are now disturbing indications concerning the caring for suffering individuals at the end of life. The present study deals with some of the fundamental issues related to the palliative care philosophy and sugests specific instruction to undergraduate students by means of Palliative Care courses, aiming at establishing a humanitarian attitude by future workers towards those who are dying. Hope can be found in the intervention in the training of health workers, in restructuring of courses by taking an anthropological view into account beyond the necessary technoscientific training, and in implementing the Palliative Care philosophy. In order to validate this discussion and to characterize the training of health workers with regard to new educational ideas, literature was searched for discussion about the training of these workers and the care of the patient beyond healing resources, but not beyond symptomatic resources. The adopted methodology combines the systematic review of the national and international literature about the subject and empirical research, by applying a questionnaire to a multiprofessional team working with Palliative Care at a teaching institution. The study was developed with a qualitative approach. The subjects helped by identifying problems and making suggestions. Based on the results, an emerging need was unveiled: that of enabling health workers to face caring for patients beyond healing resources, through ongoing training fundamented on the knowledge about the process of death and dying. / BV UNIFESP: Teses e dissertações