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Disgust is a part of medical education. Whether in the anatomy lab, the operating room, or the hospital wards, medical school is often the first time that future doctors see human suffering manifested in bodies that elicit embarrassment, disgust and fear. Over the course of training, seeing such bodies goes from exceptional to commonplace as doctors learn to witness and empathize with suffering without becoming overwhelmed by it. In this thesis, I examine students’ first encounters with abject bodies in the anatomy lab, their later encounters with such bodies in their clinical years, and the educational programming shapes students’ gaze towards these bodies as they develop from laypeople into professionals. I argue that while medical humanities curricula implemented into gross anatomy help students manage challenging personal feelings elicited by the corpse, taboos and silences during the clinical years prevent students from thinking deeply about how patients experience having bodies that elicit disgust. The dearth of reflection on feelings of disgust during clinical training leaves doctors in training ill-equipped to promote and maintain patient dignity during medical care, particularly at the end of life. / Urban Bioethics

The mature minor doctrine legally allows minors with the maturity of an adult to make decisions about their medical treatment, sometimes without the knowledge of their parent or guardian. However, the mature minor doctrine does not live up to its expectations; there are no guidelines for determining if a minor is mature or if the minor has the capacity to consent. The court system’s reluctance to allow minors to refuse treatment, the focus on stereotypical adolescent behavior, and the possibility of penalization of the family also serve as drawbacks to minors exercising their right to bodily autonomy through the mature minor doctrine. Standardization can solve these issues, revolutionizing the mature minor doctrine so that minors’ preferences about their care, particularly in the setting of life-threatening illness, can be honored. / Urban Bioethics

Abstrakt  Bakgrund: Cirka 56,8 miljoner människor i världen beskrivs behöva palliativ vård varje år. I Sverige avlider cirka 90 000 människor per år och cirka 80% av dem kan ha behövt palliativ omvårdnad. Syfte: Syftet med litteraturöversikten är att beskriva sjuksköterskors erfarenheter av att vårda patienter i livets slutskede på sjukhus. Metod: En litteraturstudie genomfördes på nio kvalitativa artiklar. Databassökning genomfördes i Cinahl, Pubmed och PsycInfo. För att analysera studierna har Fribergs femstegsmodell använts. Resultat: Analysen resulterade i fyra huvudkategorier och tio underkategorier. De fyra huvudkategorierna var känslomässiga reaktioner, stöd och bristande stöd, copingstrategier och strävan efter att vara professionell. Konklusion: Sjuksköterskor upplever vård i livets slutskede som meningsfullt och känslomässigt utmanande. Kunskapsbrist hos sjuksköterskor kan påverka patienters vårdkvalitet och bristande stöd från arbetsplatsen kan påverka sjuksköterskors hälsa. Ytterligare forskning kan behövas angående sjuksköterskors utbildning och erfarenheter av palliativ vård. / Abstract  Background: Around 56.8 million people in the world are described as needing palliative care each year. In Sweden, around 90,000 people die each year and around 80% of them have needed palliative care. Aim: The aim of the literature study is to describe nurses' experiences of caring for patients at the end of life in hospitals. Methods: A literature study was carried out on nine qualitative articles. Database search was performed in Cinahl, Pubmed and PsycInfo. To analyze the studies, Friberg's five-step model has been used. Results: The analysis resulted in four main categories and ten subcategories. The four main categories were emotional reactions, support and lack of support, coping strategies and ambition to be professional. Conclusion: Nurses experience end-of-life care as meaningful and emotionally challenging. Lack of knowledge among nurses can affect patients' quality of care and lack of support from the workplace can affect nurses' health. Further research may be needed regarding nurses' education and experiences in palliative care.

Background: Twenty percent of Americans live in rural areas where most of their healthcare is provided in Critical Access Hospitals (CAHs). It is unknown how frequently obstacle and helpful behavior items occur in End-of-Life (EOL) care in CAHs. Objectives: To determine the frequency of occurrence scores of obstacle and helpful behavior items in providing EOL care in CAHs. To also determine which obstacles and helpful behaviors have the greatest or least impact on EOL care based on the magnitude scores. Methods: A questionnaire was sent to nurses working in 39 CAHs in the United States. Nurse participants were asked to rate obstacle and helpful behavior items by size and frequency of occurrence. Data were analyzed to quantify the impact of obstacle and helpful behavior items on EOL care in CAHs by multiplying the mean size by the mean frequency of items to determine mean magnitude scores. Results: Items with the highest and lowest frequency were determined. Additionally, obstacle and helpful behavior item magnitude scores were calculated. Seven of the top ten obstacles were related to patients' families. Seven of the top ten helpful behaviors involved nurses ensuring families had positive experiences. Discussion: CAH nurses perceived issues around patient family members as significant obstacles to EOL care. Nurses work to ensure that families have positive experiences. Visiting hour issues seemed to be irrelevant. The use of technology, such as telehealth, seemed to provide little benefit in EOL care in CAHs.

Bakgrund: Palliativ vård i livets slutskede syftar till att främja livskvalitet och lindra lidande. När döden är nära önskar de flesta att få slippa lidande samt få en död som är förenlig med sina egna värderingar. Värdighet som identitet är en av de viktigaste aspekterna i samband med vårdande och har stor påverkan på hur vårdandet av individen ska ske. Patientens värdighet kan i vårdsituationer gå förlorad på grund av bristande kunskaper och bemötande från hälso- och sjukvårdspersonal. Syfte: Syftet med denna litteraturöversikt var att undersöka sjuksköterskors erfarenheter av att bevara värdigheten hos vuxna patienter vid vård i livets slutskede. Metod: Studien har genomförts som en strukturerad litteraturöversikt med inslag av den metodologi som används vid systematisk litteraturöversikt. Genom systematisk databassökning har 13 artiklar identifierats. Artiklarna har kvalitetsgranskats och sedan analyserats enligt Fribergs analyssteg. Resultat: I resultatet framkom tre kategorier: Respekt för patienten, Kommunikation och Lindra lidande. Dessa komponenter ansågs vara viktiga i bevarandet av patientens värdighet vid vård i livets slutskede. Slutsats: Att bevara värdighet hos patienter vid vård i livets slutskede inbegriper respekt för patientens värdighet, god kommunikation mellan patient, närstående och vårdteam samt lindrat lidande. Detta kan uppnås genom att respektera och stödja patientens rätt till delaktighet i vård och behandling samt att vara lyhörd inför de preferenser och önskemå lpatienten har inför livets slutskede. Sjuksköterskans nyckeluppgift för att bevara patientens värdighet är att försöka förstå och respektera patientens bakgrund, tro och religion. Frånvaro av fysiskt och psykiskt lidande anses vara av vikt i bevarandet av patientens värdighet. / Background: Palliative care at the end of life aims to promote quality of life and alleviate suffering. When death is near, most people wish to avoid suffering and to have a death that is compatible with their own values. Dignity as an identity is one of the most important aspects in connection to caring and has a great influence on how the care of the individual should be done. The patient's dignity can be lost in care situations due to lack of knowledge and treatment from healthcare professionals. Aim: The aim of this study was to explore nurses’ experiences of preserving dignity in adult patients in end of life care. Method: The study has been conducted as a structured literature review with the elements of methodology used in systematic literature review. Through systematic database search, 13 articles have been identified. The articles have been quality checked and analyzed according to Friberg’s steps of analysis. Results: In the result three categories emerged: Respect for the patient, Communication and Reducing suffering. These components were considered important in the preservation of the patient’s dignity in end of life care. Conclusions: Preserving dignity of patients in end-of-life care includes respect for the patient's dignity, effective communication between the patient, relatives and care team, and alleviated suffering. This can be achieved by respecting and supporting the patient's right to participate in care and treatment, as well as being sensitive to the preferences and wishes the patient has before the end of life. Nurses’ key task in preserving the patient's dignity is to try to understand and respect the patient's background, faith and religion. Absence of physical and psychological suffering is considered important in preserving the patient's dignity.

Introduction: Death is not an uncommon outcome for patients who seek immediate care in an emergency department. Although death is common in the emergency department there is little literature regarding end-of-life care in the emergency department. The purpose of this research study is to determine what changes emergency nurses would suggest to improve end-of-life care for dying patients and their families in emergency departments. Background: A national, geographically dispersed, random sample of 1000 emergency nurses were sent a questionnaire entitled, "Emergency Nurses' Perceptions of End-of-Life Care." Inclusion criteria included nurses who were members of the Emergency Nurses Association, could read English, worked in an emergency department, and had cared for at least one emergency patient at the end-of-life. Results: There was an overwhelming consistency in recommended changes to improve care of the dying emergency department patient by the nurses participating in the study. Five major themes were identified: 1) increasing the amount of time emergency nurses have to care for dying patients and their families; 2) consistently allowing family presence during resuscitation; 3) providing a comfortable patient room; 4) providing for more privacy at the end-of-life; and 5) providing a family grief room. Conclusion: The emergency department will continue to be the primary access point for dying patients to receive medical and nursing care. Implementing changes based on emergency nurse recommendations may dramatically improve the experience for the dying patient as well as their family members.

Bakgrund: Hjärtsvikt är en fatal sjukdom och innebär hjärtats oförmåga att möta kroppens metabola behov på grund av en inadekvat hjärtminutvolym. Då sjukdomen innebär en tilltagande symtombörda desto längre tiden går, rekommenderas en samtidig vård med palliativ inriktning. Målet med vårdformen är att förbättra livskvaliteten för att kunna leva så gott som möjligt. Syfte: Att ur ett patientperspektiv belysa aspekter som påverkar uppfattningen av den palliativa vården hos patienter med hjärtsvikt. Metod: En allmän litteraturöversikt med ett systematiskt tillvägagångssätt har genomförts med ändamålet att sammanställa och redovisa kunskapsläget inom det utvalda området. Resultat: Två kategorier identifierades, kunskapsaspekter och känslomässiga aspekter. Inom kunskapsaspekter identifierades det att patienter hade en bristande kunskap gällande hjärtsvikt men även gällande innebörden av palliativ vård. Inom kategorin känslomässiga aspekter betonade patienterna att känslan av att hopp fanns var av vikt för välmåendet. Patienter uttryckte att de såg på livets slutskede som något besvärligt och att inte veta när döden skulle komma orsakade stor ångest. Gällande döendet hade patienter genomfört praktiska planer såsom testamentering, men de hade inte uttryckt önskemål och preferenser inför vård i livets slutskede. Att få möjligheten att vårdas i hemmet bidrog till en känsla av trygghet för patienterna, men i motsats kunde det även upplevs otryggt. En anledning var att personalen inte visste hur hjärtsvikt skulle hanteras, vilket kunde föranleda sjukhusvistelser. Slutsats: Att drabbas av en hjärtsvikt var omvälvande för patienten. Utifrån var patienten befinner sig i bearbetningsprocessen var denne mer eller mindre mottaglig för information. Detta påverkade i sin tur hur patienten ställde sig till palliativ vård. / Background: Heart Failure is a fatal disease and describes the heart's disability to counter the body’s requirement because of an inadequate cardiac output. The disease amounts to a high level of symptoms, and because of it palliative care is recommended early in the process. The goal is to improve quality of life so that the patient can live as well as possible. Aim: Was to, from a patient perspective, highlight aspects that influence heart failure patients’ perceptions regarding palliative care. Method: A general literature review with a systematic approach has been carried out with the aim of compiling and reporting the state of knowledge within the selected area. Results: Two categories were identified, aspects of knowledge and emotional aspects. Within aspects of knowledge, it was identified that patients had a lack of knowledge regarding heart failure but also regarding the meaning of palliative care. Within the category of emotional aspects, patients emphasized that the feeling of hope was important for their well-being. Patients expressed that they saw the end of life as something difficult. Regarding dying, patients had carried out practical plans such as writing a will, but they had not expressed wishes and preferences for end-of-life care. Having the opportunity to be cared for at home contributed to a feeling of security for the patients. Receiving care at home contributed to the patient not going to the hospital as often. However, being cared for at home could not completely relieve the anxiety. There was a lack of knowledge among the staff regarding how heart failure should be handled and treated. Conclusion: Suffering from heart failure was upsetting for the patient. Depending on where the patient was in the processing process, they were more or less receptive to information. This in turn influenced how the patient approached palliative care.

Bei der vorliegenden Bachelorarbeit handelt es sich um eine Betrachtung rechtlicher Rahmenbedingungen und gesunheitspolitischer Faktoren in Bezug auf den Einsatz und die Notwendigkeit Sozialer Arbeit in der ambulanten palliativen Versorgung, mit Schwerpunkt der Spezialisierten Ambulanten Palliativversorgung im fünften Sozialgesetzbuch. Mittels systemischer Literaturrecherche werden rechtliche, strukturelle und gesellschaftliche Gründe untersucht, die für oder gegen das Vorkommen von Sozialarbeiter*innen in der ambulanten Palliativversorgung für Erwachsene vorliegen. Desweiteren werden rechtliche Möglichkeiten für den Einsatz dieser Profession im Rahmen des Sozialgesetzbuch V aufgezeigt. Bei den Untersuchungen handelt es sich ausschließlich um eine theoretische Analyse. Diese Bachelorarbeit ist eine sehr komplexe wissenschaftliche Arbeit, die sowohl gesundheitspolitische, professionstheoretische, aber auch leistungsrechtliche sowie leistungserbringungsrechtliche Punkte berührt. In acht Kapiteln werden einschlägige Begriffe erläutert, die Entstehung der Palliative Care und die Entwicklung des Sterbens in der Moderne aufgezeigt. Die rechtlichen Rahmenbedingungen der ambulanten Palliativversorgung werden betrachtet sowie die komplexe Organisations- und Versorgungskultur der Selbstverwaltung in der gesetzlichen Krankenversicherung. Schließlich gibt es einen Ein- und Ausblick in die Potentiale der Sozialen Arbeit im Kontext End-of-Life-Care und Netzwerkkordination.:Abkürzungsverzeichnis Abbildungsverzeichnis 1 Einleitung 2 Begrifflichkeiten 2.1 Gesundheit 2.2 Palliative Care 2.3 Gesundheitspolitik 3 Entstehung und Bedeutung der Palliative Care 3.1 Entwicklungen des Sterbens in der Moderne 3.2 Anfänge der palliativen Versorgung 3.3 Total Pain und die vier Säulen der palliativen Arbeit 3.4 Versorgungsangebote in Deutschland 4 Palliative Care in der ambulanten Versorgung 4.1 Rechtliche Grundlagen 4.2 Allgemeine ambulante Palliativversorgung 4.3 Spezialisierte ambulante Palliativversorgung 4.3.1 Der Gemeinsame Bundesausschusses und die Richtlinie 4.3.2 Der Spitzenverband der gesetzlichen Krankenkassen 4.3.3 Organisationsstruktur und Versorgungskultur 5 Soziale Arbeit in der ambulanten Palliativversorgung 5.1 Kernziele und Arbeitsauftrag 5.2 Aufgaben in der palliativen Versorgung 5.3 Psychosoziale Probleme 6 Kritische Auseinandersetzung 6.1 Resümee der SAPV-Rechtsgrundlagen 6.1.1 Empfehlungen der Fachverbände 6.1.2 Tragende Gründe 7 Ausblick und Potential der Sozialen Arbeit 7.1 Soziale Arbeit im Kontext End-of-Life Care 7.2 Netzwerkkoordination 8 Fazit Literaturverzeichnis Anhang

Bakgrund: I Sverige dör ca 90 000 människor varje år, varav 550 av dessa är barn.  Specialiserad palliativ vård samt specialistutbildningar inom palliativ vård är generellt inte utformad för vård av barn i livets slutskede. Bristfällig utbildning hos vårdpersonal samt liten erfarenhet av att ge palliativ vård till barn orsakade känslor av osäkerhet i  vårdsituationer med barn och familjer. Syfte: Att beskriva vårdpersonals erfarenheter av att vårda barn i livets slutskede på sjukhus. Metod: Litteraturstudie baserad på nio kvalitativa studier samlade från databaserna Cinahl och PubMed. En manuell sökning gjordes. Analys genomfördes med hjälp av Fribergs femstegsmodell. Resultat: Analysen resulterade i fyra huvudkategorier och elva underkategorier. Huvudkategorierna var: känslomässiga reaktioner, att hantera svåra situationer, utmaningar i mötet med familjer och möjligheter i mötet med familjer. Konklusion: Vårdpersonal önskar utbildning i palliativ vård av barn samt kommunikationsövningar med sörjande familjer. Vidare forskning behövs angående barns risk för lidande vid familjecentrerat förhållningssätt, nödvändiga organisatoriska åtgärder samt vårdutbildningars behov av att inkludera palliativ vård av barn. / Background: About 90,000 people die every year in Sweden and of those are 550 children. Specialized palliative care and specialist education in palliative care are generally not designed for end-of-life care of children. Inadequate education of healthcare professionals and little experience of giving palliative care for children caused feelings of insecurity in care situations with children and families. Aim: The purpose was to describe healthcare professionals experiences of providing end-of-life care for children in hospitals. Methods: Literature study based on nine qualitative studies collected from the databases Cinahl and PubMed. One manual search was performed. The analysis was implemented using Friberg's fivestep model. Results: The analysis resulted in four main categories and eleven subcategories. The main categories were: emotional reactions, to handle difficult situations, challenges in meeting families and opportunities in meeting families. Conclusion: Nursing staff want education in palliative care of children and communication exercises with grieving families. Further research is needed regarding children's risk of suffering from a family-centered approach, necessary organizational measures and the need for nursing education to include palliative care of children.