Bakgrund: Kommunikation består av både verbal och icke-verbal kommunikation. Omvårdnaden i livets slut innefattar såväl patient som anhöriga och det kan innebära att sjuksköterskan ska ha en stödjande funktion åt såväl patient som anhörig, lindra symtom och se till så att patientens värdighet och integritet bevaras. Syfte: Syftet med litteraturstudien var att belysa sjuksköterskans erfarenhet av kommunikationens betydelse för omvårdnaden i livets slut. Metod: Det genomfördes en litteraturstudie som baserades på 13 vetenskapliga artiklar med kvalitativ studiedesign. För att få fram artiklar utfördes sökningar i två databaser. Genom analys av valda artiklar identifierades två tema och åtta subtema. Teman som framkom var Sjuksköterskans interaktion och Begränsningar i interaktionen. Resultat: Kommunikation var en stor del av sjuksköterskans omvårdnadsarbete i livets och innebar såväl kommunikation med patient och anhörig som med kollegor i vårdteamet eller andra instanser.Konklusion: Utifrån examensarbetets resultat framkom det att sjuksköterskor hade erfarenhet av att kommunikationen var en högst väsentlig del för omvårdnadsarbetet och det visade sig även att genom en fungerande kommunikation blev omvårdnaden positivt påverkad. / Background: Communication includes both verbal and non-verbal communication. End-of-life care includes both the patient and relatives, and this can mean that the nurse must provide support, relieve symptoms, and ensure that the patient's dignity and integrity is preserved.Aim: The aim of the literature study was to shed light on the nurse's experience of the importance of communication for nursing at the end of life.Method: A literature study has been conducted based on 12 scientific articles with qualitative study design. To obtain the articles, searches have been performed in two databases. Through analyzing the chosen articles, two themes and eight sub themes were identified. The themes that emerged were The nurse's interaction and Limitations in the interaction.Results: Communication is a large part of the nurse's nursing work in end-of-life care and includes communication with the patient and relatives as well as with colleagues in the care team or with other agencies.Conclusion: Based on the results of this thesis, it has emerged that nurses experienced that communication is a very important part of nursing care, and it has also been shown that through functioning communication, nursing is affected in a positive way.

This thesis presents an ethnographic study of the experiences of men living with and dying from serious illness in prison, with a particular focus on the kinds of care they receive and the ways in which they experience that care. The dissertation draws on extensive ethnographic fieldwork conducted over two years in U.S. state prisons in Maine, presented in three standalone papers. The first paper outlines how the prison and its health care system shape the illness experiences of older and ageing prisoners and asks, what does it mean when the lives of prisoners collide with contracted for-profit medical care and how might their lives be constituted as unworthy of care? The stakes lie in applied policy and practical solutions for custodial services. The second paper explores the experience of caring and being cared for in the context of a prison hospice program, in which incarcerated men provide care to peers who are ill or dying. Through tracing one man’s end of life journey, this chapter considers how hospice caring makes and remakes death and life in prison, and the ways in which this “nefarious” form of escape from disciplinary power translates in the repressive penal regime. The final paper has its roots in sensory ethnography and the emerging field of sensory penality. This is a reflexive piece in which I probe my sensorial subjectivity and particularly touch as a medium of inquiry to explore the sensations of life, death, and dis/connection experienced in a prison infirmary. The observed feel of life and death illuminates new ways of understanding care in custody as a space of simultaneous brutality, beauty, indignity and intimacy. Taken together, the papers shed light on constellations of care in prison, the contingency of relations and personhood, and points of friction between care and custody. / Dissertation / Doctor of Philosophy (PhD) / At a time when the prison population is rapidly ageing and more people than ever are dying in custody, this thesis explores what it is like to experience serious or terminal illness in prison, the kinds of care prisoners receive and how they experience that care. Based on ethnographic fieldwork in U.S. state prisons, three themes are examined: 1) how the prison and its privatized health care system shape the illness experiences of older prisoners; 2) how prisoners mediate the experience of dying in prison through a peer- based prison hospice program; and 3) how the senses and especially touch elicit new ways of knowing and understanding end of life in prison. Taken together, the three papers shed light on forms of care in prison, the mutability of relations and life, and points of friction between care and custody.

Inom sjukvården ställs sjuksköterskor inför situationer där vård i livets slutskedekrävs. Som sjuksköterska är en av de svåraste uppgifterna i yrket att möta döendepatienter och deras närstående. Syftet med litteraturstudien är att undersökaallmänsjuksköterskans erfarenheter av att vårda patienter i livets slutskede,utanför specialiserade palliativa vårdenheter som till exempel hospice. Resultatetdelas in i sju kategorier: Sjuksköterskors känslor i mötet med palliativ vård,Tidsbrist och stress, Resurser för att hantera påfrestande situationer, Vikten averfarenhet, Betydelsen av kommunikation, Anhörigas roll i vården samt Positivaerfarenheter av vård i livets slutskede som speglar sjuksköterskors upplevelser.Denna litteraturstudie visar att det är komplext att vårda patienter i livets slut menmed stöd och erfarenhet kan de negativa upplevelserna vändas till en personligutveckling i yrkesprofessionen för allmänsjuksköterskan. / In medical care, nurses are faced with situations where palliative care is required.As a nurse it´s one of the most difficult tasks in the profession, to respond todying patients and their relatives. The purpose of this study is to investigategeneral nurses' experiences of caring for patients in palliative care, outside ofspecialist palliative care units such as hospices. The result is divided into sevencategories: Nurses' feelings in the face of palliative care, Lack of time and stress,Resources for dealing with stressful situations, The importance of experience, Theimportance of communication, Relatives' role in health care and Positiveexperiences of palliative care which reflect nurses' experiences. This literaturereview shows that it is complex to treat patients in end of life care but with thesupport and experience, negative experiences can turn into a personaldevelopment in ounce profession as a general nurse.

Syftet med denna uppsats är att undersöka hur undersköterskor i fyra olika verksamheter upplever att deras arbetssituation har förändrats sedan man införde LCP (Liverpool Care Pathway). Vidare belyses hur undersköterskorna menar att samarbete, kommunikation och relation har påverkats och på vilket sätt och i så fall hur. Uppsatsen är skriven utifrån samverkan och ett professionellt förhållningssätt i socialt arbete. Ett annat perspektiv som uppsatsen belyser är på vilket sätt metoden blev introducerad i organisationen, detta utifrån implementeringsprocesser och kommunikationsteorin. Resultatet visar att undersköterskorna upplever en större delaktighet och trygghet i deras arbete idag jämfört med tidigare. Vidare har samarbetet med andra samverkanspartners blivit mycket bättre sedan LCP- metoden infördes. Med hjälp av metoden känner undersköterskorna en ökad trygghet, delaktighet, klarhet, tydlighet och öppenhet. Detta genom de checklistor som LCP- metoden bygger på. Det framkom i uppsatsen att undersköterskorna känner att de kan prata mer öppet om döden och döendet med anhöriga efter införandet av LCP - metoden .Nyckelord: Kommunikation, / The purpose of this essay is to explore how staff nurses in four different businesses feel that their work situation has changed since the introduction of LCP (Liverpool Care Pathway). Further highlights is how the nurse believes that cooperation, communication and relationships have been affected, in what way and if so how. The essay is written from collaboration and a professional approach in social work. Another perspective the essay illustrates is the way in which the method was introduced in the organization, this according to implementation processes and communication theory. The result shows that the staff nurses experience a greater involvement and confidence in their work than before. Furthermore has the cooperating with other collaboration partners turn out to be much better since the LCP-method was introduced. By using the method the staff nurses feel an increased security, participation, transparency, clarity and transparency. The LCP-method with its checklists contributes to these feelings. It appeared in the essay that the staff nurses feel they can talk more openly about death and dying with relatives after the introduction of the LCP-method.

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.

Skilled home health care (HH) is the largest and fastest growing long-term care setting in the United States. Patients in HH are served by an interprofessional team, and may have little direct contact with physicians, when discussing their progress, prognosis, and goals of care. Such conversations are part of primary palliative care communication. Evidence on primary palliative care communication training in the non-physician HH interprofessional team is lacking. The objectives of this study were to assess the feasibility, acceptability, and preliminary effectiveness of using a palliative care communication model known as COMFORT© to provide palliative care communication training to HH staff. A randomized controlled trial was conducted at a regional health system in the southeastern U.S. to test online training modules (n = 10) (Group 1) and online training modules plus face-to-face training (n = 8) (Group 2). Measures included training completion rates, staff acceptability ratings, comfort with palliative and end-of-life communication (C-COPE) and moral distress (MMD-HP). Results showed that COMFORT© training was feasible (92%), highly acceptable (>4 on a 6-point scale), and positively correlated with improved C-COPE scores (P = .037). There was no significant difference in moral distress scores pre- and post-intervention or in effectiveness between the groups. However, acceptability of COMFORT© was positively correlated with history of leaving or considering leaving a job due to moral distress ( χ 2 = 7.6, P = .02). Preliminary findings from this pilot study suggest that administration of COMFORT© training was feasible, and it was correlated with increased HH staff comfort with palliative care communication.

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