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.

The end of life discussions can often be difficult for a multitude of reasons. Our culture is pervasive with ideas of mortality, and that medicine can avert this human constant. Medicine, as a field, must embrace our limitations so that we can engage in honest discussions with the families and the patients regarding the end of life care.

Background: Critical Care Nurses have previously noted obstacles in caring for dying patients. Obstacles noted by nurses working in more urban settings have been reported. What is not known is the obstacles to providing end-of-life (EOL) care as perceived by nurses working in Critical Access Hospitals (CAHs). Objective: To determine the stories/experiences related to obstacles in providing EOL care as reported by nurses working in CAHs. Methods: This was an exploratory, cross-sectional study. Previous quantitative data has been reported. Documentation of the qualitative stories/experiences of nurses working in CAHs related to obstacles to providing EOL care for dying patients and their families. Results: Sixty-four CAH nurses provided 96 categorizable responses. Two major categories emerged related to either Family, Physician, & Ancillary staff issues or Nursing, Environment, Protocols, and Miscellaneous issues. Issues related to family behaviors included families insisting on futile care, disagreeing about DNR/DNI orders, issues with out-of-town family members, or even family members who suggested to the nurse to hasten the death of their family member. Physician behaviors related to providing false hope, dishonest communication, continuing futile treatments, or not ordering pain medications. Nursing issues included not having enough time to provide EOL care, already knowing the patient/family, or actions of compassion for the dying patient and family. Conclusion: Family issues continue to be obstacles to providing EOL care for nurses regardless of urban or rural setting. Physician behaviors are also consistent regardless of setting. Education of family members regarding issues with EOL care in ICUs is challenging because it is likely the families first experience with ICU terminology and technology. Further research into EOL care in CAHs is needed.

BACKGROUND: People survive repeated health crises that used to be fatal and, at times, treatment intended to prolong life, prolongs death instead. Many people die in hospitals although they say they prefer to die at home. At the same time, research identifies multiple ways the American healthcare system is ill equipped to serve patients at the end of life. Presently, 20% of Americans die in Intensive Care Units (ICU), thus ICUs represent an important setting for learning about end-of-life care and death in America today. PURPOSE: To explore the nature of ICU care as perceived by family members, this qualitative study analyzed 693 reports from surveys mailed to family members of patients who died in the ICU of a major Boston hospital between 2009 and 2015. The study focused on experiences of received services as reported in responses to the survey’s three open-ended questions regarding helpful and unhelpful aspects of care surrounding the patient’s death. Family member experiences with social work services were also explored. METHODS: Data were assessed using the Family-centered Care (FCC) model, an emerging framework for provision of best practices in hospital settings. This framework emphasizes that patients, families, and health care providers work in partnership to set treatment goals. Since FCC has been correlated with better outcomes, one research objective here was to explore the extent to which family members’ experiences reflected the presence of FCC. The study also assessed family members’ experiences that fell outside the realm of FCC. Using NVivo software, analysis was guided by Braun and Clarke’s (2012) six-phase thematic analysis approach. FINDINGS AND IMPLICATIONS: Family members described numerous positive experiences. Deaths were humane and the delivery of FCC was evident. An in-depth data analysis provided illuminating details of FCC and explicated over 47 themes important to families’ ICU experiences. Families reported that they received emotional support, were well-informed, and were treated with respect. Findings suggest that FCC is possible in an ICU setting, supporting the use of FCC in ICU care and suggesting that it could profoundly improve the quality of end-of-life care. Responses concerning the role of social work were limited.

Background – Most likely, nurses will be in contact with patients and their relatives in palliative care at the end of life at some point in their careers. Studies have shown that relatives (family members or close friends) play a crucial role in palliative care, and that communication is a key factor in providing support for relatives. For optimal care provision, it is essential for nurses to consider and comprehend the experiences of relatives involved in palliative care at the end of life. Aim – The aim of the study was to describe the experiences of being relative to a person receiving palliative care in the end of life. Method – For this study a literature-based study grounded in analysis of qualitative researchwas used (Friberg, 2017). The qualitative method aims to create an understanding of individual’s experiences, perceptions, and needs. Nine scientific studies where analyzed. Results – Three themes where found; 1) The importance of communication and cooperation, 2) Respect and understanding, 3) Emotional challenges. Relatives express a need for clear and accessible information to alleviate stress and enhance their ability to support their loved ones effectively. Active involvement in care decisions and a person-centered approach were underscored as pivotal. Conclusion – The study underscores the significance of tailored information dissemination, active involvement of relatives in care decisions, and a person-centered approach to honor the dignity of patients in end-of-life care. Addressing these aspects can significantly improve the end-of-life experience for patients and their relatives. / Syftet med denna studie var att beskriva erfarenheter av att vara närstående till en person som erhöll palliativ vård i livets slutskede. Närstående påverkas betydligt av situationen då livets slutskede hos deras anhörige väcker många olika känslor och upplevelser. Efter noggrann granskning och analys av nio vetenskapliga artiklar framkom att närstående önskade att få detaljerad information och ville vara mer involverade i vårdbeslut som tas för deras anhörige. När närstående fick vara delaktiga i vården ökade deras välbefinnande. Resultatet tydliggjorde även vikten av att bevara patientens integritet genom att individanpassa vården för att säkerställa en lugn och fridfull palliativ vård i livets slutskede. Närstående uttryckte en önskan om att undvika onödigt lidande för sin anhörige. Närstående menade att detta kunde uppnås genom att deras anhörige fick smärtlindring vid behov. Dessutom efterfrågade närstående stöd från sjuksköterskan, vilket visade sig vara av stor betydelse för att hantera denna känsliga period i livet. Diskussionen belyser sjuksköterskans centrala roll i att möta närståendes behov. Detta inkluderar att patientens integritet beaktas genom att ge en respektfull vård. Diskussionen framhåller närståendes behov av stöd och sjuksköterskans roll i att tillhandahålla känslomässigt stöd och lindra lidande. Genom att bättre förstå och tillgodose närståendes behov kan sjuksköterskan skapa en mer stödjande och empatisk vårdmiljö för både patienten och deras närstående under livets slutskede.

Complex continuing care (CCC) is a healthcare setting where many patients die. Previous research has demonstrated that patient deaths can be meaningful and challenging for nurses. However, little knowledge exists regarding how the unique features of CCC influence nurses’ experiences in managing patient deaths. The objective of this study was to explore nurses’ experiences when patients die and their perceptions of support surrounding these experiences. Using interpretive description methodology, 13 memorable patient death experiences were explored in semi-structured interviews with licensed nurses (n=12) and nursing leaders (n=1). Criterion and theoretical purposeful sampling were used to develop a rich understanding of nurses’ experiences when patients die. Concurrent data collection and analysis uncovered five key intersubjective themes which described nurses’ experiences with individual deaths and how nurses’ experiences change overtime which included: (a) Professionally experiencing patients’ deaths: 'Engaging your left brain;’ (b) Personally experiencing patients’ deaths: ‘I’m a human being too;’ (c) Seeking resolution in the experience: ‘It was a good resolution;’ (d) Integrating professional and personal experiences: ‘Applying what you learn in your nursing life into your personal life and vice versa,’ and; (e) Supporting One Another in a Culture of Acknowledging Patients’ Deaths and Nurses’ Experiences: ‘They expect us just to take it, the nursing profession is like that.’ These findings suggest that nurses need support to facilitate the interpersonal and intrapersonal aspects of their experiences with patient death. This support should be grounded in a unit culture which openly accepts patient death and acknowledges nurses’ experience. Just-in-time education, peer mentorship and targeted support may further facilitate nurses’ ability to find resolution when patients die and support their on-going journey towards integrating death experiences in their lives and practice. / Thesis / Master of Science (MSc) / Complex continuing care (CCC) is a healthcare setting where many people die. Patient deaths can be difficult and sad for nurses. The goal of this study was to learn more about nurses’ experiences when patients die in CCC. Nurses were asked to share memories of when patients died in CCC. This study found that patient deaths influence nurses personally and professionally. Nurses with fewer death experiences were uncomfortable caring for dying patients. Feeling understood and having their experience recognized were meaningful ways that nurses wanted to be supported. It was very important to nurses that the deceased person was respected and nurses worried about patients’ family members. This research shows that nurses with fewer death experiences would benefit from unique education and support. It is important to support nurses by creating a culture that acknowledges death in CCC and nurses’ responses to patients’ deaths.

This scoping review contains a literature analysis regarding interventions used by health care workers to alleviate guilt in caregivers of patients during end-of-life care. During end-of-life care, many transitions and decisions are made that add to the burden of caregivers. Family caregivers experience many physical, financial, and emotional stressors during the journey of end-of-life care, and this can result in guilt. Feelings of guilt can lead to poorer health outcomes and coping in family caregivers and should be addressed by health providers. In this scoping review, a literature search was conducted using various key terms like "guilt," "hospice," "end-of-life care," "interventions," and "caregivers." The articles that fit the criteria were examined to find tested interventions to alleviate guilt in family caregivers of patients in end-of-life or hospice care. A total of 13 articles were analyzed and divided into three sections, interventions that directly influence guilt, interventions that indirectly influence guilt, and interventions recommended by caregivers and hospice workers. Main themes that emerged for tested and recommended interventions include shared decision making, increased communication with health care providers, increased education on disease process and available options, and an emphasis on caregiver self-care. This research is limited and can provide the framework for future interventions to be tested and applied to the care of family caregivers experiencing guilt while caring for or grieving their loved one.