The overall aim of this thesis was to study palliative end-of-life care outside specialist palliative care settings, from an organizational perspective and from professionals’ and relatives’ experiences. In Study I 174 individuals were identified retrospectively from nursing records and palliative care identification forms as being in a palliative phase. Data were analyzed with descriptive and analytic statistical methods. In Study II a total of nine nurses working in primary home care, community care, and hospitals were interviewed. Phenomenological methodology was used to analyze data. In Study III 17 enrolled nurses, who worked in community or primary care and in a sitting service organization, participated in four focus group interviews. Data were analyzed with qualitative content analysis. In Study IV seven relatives from four families were interviewed twice. They had each cared in the private home for a dying family member who had received sitting service. Direct interpretation and categorical aggregation were used to analyze data. The results highlight challenges in palliative care, vulnerable situations, and a need of support (I–IV). Individuals’ needs for both palliative care and sitting service were identified, including those of a smaller part of the population who actually received the sitting service. (I). Registered nurses’ responsibilities included care at the same time for individuals in both palliative and curative phases. This created vulnerable situations for the nurses, since their ambitions concerning the care did not correspond to available resources (II). The enrolled nurses’ task was to manage ongoing life and dying in different care settings, to meet individual needs and still provide equivalent care. Despite experiences of vulnerable situations, they felt safe (III). Relatives experienced care situations differently, related to differences in families, the illness trajectory, the need for support, and the support offered. Without sufficient support, vulnerable situations occurred, which made the relatives feel insecure (IV). Thus, care situations in palliative end-of-life care can be experienced in different ways, with different levels of vulnerability. One implication of the research might be to suggest that professional caregivers, to supplement the relatives’ own resources with support tailored to the individual’s and the family’s needs

Bakgrund: Sjuksköterskan arbetar nära vuxna patienter i livets slutskede där försök till läkande behandling gått över till en palliativ behandling. Många av dessa patienter har en komplicerad symtombild som kräver kunskaper i symtomhantering och de har också ofta oro, ångest och funderingar kring existentiella frågor som sjuksköterskan kan behöva hantera.Syfte: Syftet var att beskriva sjuksköterskors erfarenheter av att vårda vuxna patienter i livets slutskedeMetod: Metoden som valdes var en litteraturbaserad studie grundat på kvalitativ forskning, baserat på tolv vetenskapliga artiklar.  Resultat: Ur analysen framträdde tre kategorier såsom Frustration, skicklig kommunikatör, få till ett nära samarbete med åtta underkategorier. Slutsats: Sjuksköterskors erfarenheter vid vård i livets slutskede påvisar betydelsen av att relationer mellan patienten, anhöriga och vårdpersonal skapas.

Bakgrund: Specialistsjuksköterskans uppgifter på en barnintensivvårdsavdelning (BIVA) är att vårda barn och det innefattar även att vårda barn i livets slutskede. Av de barn som vårdas på en barnintensivavdelning avlider cirka två procent. Att vårda barn och familjen i en situation där fortsatt vård och överlevnad för barnet är utsiktslöst är en tung och ansvarsfull uppgift. Syfte: Studiens syfte var att belysa specialistsjuksköterskors upplevelser av att ha vårdat ett barn vid livets slutskede på en BIVA. Metod: Som datasamlingsmetod användes semistrukturerade intervjuer med sju specialistutbildade sjuksköterskor. Intervjuerna genomfördes med hjälp av en intervjuguide bestående av en huvudfråga och därefter följdfrågor. Data bearbetades utifrån kvalitativ innehållsanalys med en beskrivande ansats. Resultat: Resultatet presenteras i tre kategorier och tio subkategorier. De tre kategorierna var följande: Att känna sig trygg och erfaren i att vårda ett döende barn, familjen i fokus samt upplevelsen av stöd och strategier i det komplexa vårdandet. Diskussion: Trots att upplevelsen av att vårda barn i livets slut är en tung och känslomässig uppgift ansåg samtliga informanter det som en ansvarsfull och positiv uppgift där de kunde göra föräldrarnas sista stund med sina barn till ett fint och ljust minne. / One of the caring tasks that specialist nurses, working in the (PICU) perform, and have to face in the daily profession is to care for children who are facing the end of life in Sweden. Approximately two percent of all the children being cared for in the PICU dies. To care for children and their families when further treatment is futile is a heavy surrounding life and death. The goal of this study was to investigate the experiences of specialist nurses caring for children at the end of life. Qualitative content analyze were used as a method. Seven semi-structured interviews, with a descriptive approach, were transcribed to condensed meanings. Finally, the meaning was coded into ten subcategories within three main categories. Conclusion of this study indicated that pediatric intensive care nurses indicated their work heavy emotionally. The nurses play a vital role to the family´s final time whit their children. It is in the hands of the nurses to support and make the final time as valuable and beautiful as possible for the family.

Bakgrund: Sjuksköterskor behöver möta närstående till personer som vårdas palliativt. Sjuksköterskan kan skapa meningsfulla relationer med närstående och använda denne som en resurs för patienten. Närståendestöd är en av hörnstenarna inom den palliativa vården. Sociala relationer är en av de 6 S:n som används vid personcentrerad palliativ vård, då närstående kan tillföra fler dimensioner till patientens livsberättelse. Syfte: Syftet med denna litteraturstudie var att beskriva sjuksköterskans erfarenheter av att möta närstående till patienter inom palliativ vård. Metod: Metoden var en litteraturöversikt där tolv vetenskapliga artiklar inkluderades. Artiklarna hämtades från databaserna CINAHL Complete och Pubmed och analyserades med hjälp av Fribergs analysmetod. Resultat: Två teman identifierades: yttre och inre förutsättningar för sjuksköterskan. Yttre förutsättningar för sjuksköterskan delades in subteman såsom tidens betydelse, vårdmiljöns inverkan och när närstående har en annan åsikt. I inre förutsättningar för sjuksköterskan framkom sjuksköterskans förmåga att involvera närstående, sjuksköterskans förmåga att utveckla sin kompetens i mötet med närstående, kommunikationens betydelse och förutsättningar att skapa teamarbete. Diskussion: Med de 6 S:n som teoretisk utgångspunkt har litteraturöversiktens resultat diskuterats utifrån bakgrund och annan relevant litteratur. Närstående behövs i vården kring patienten men det är inte alltid som närståendes vilja är densamma som patientens eller vårdgivarens. För att sjuksköterskan ska kunna använda närstående som en resurs krävs tydlig kommunikation och stöd från sjuksköterskan i arbetet mot ett gemensamt mål för palliativ vård. / Background: Nurses need to face next of kin to people who receive palliative care. The nurse can create meaningful relationships with the next of kin and can use them as a resource for the patient. Support for the next of kin is a cornerstone in palliative care. Social relations are one of the 6 S:s used for person-centered palliative care when next of kin can add more dimensions to the patient's life story. Aim: The purpose of this study was to describe nurses' experiences in meeting next of kin to patients in palliative care. Method: The method was a literature review where twelve scientific articles were included. Articles were taken from the databases CINAHL Complete and Pubmed and analyzed using analysis of Friberg. Results: Two themes were identified: external and internal conditions for the nurse. External conditions for the nurse divided into subthemes such as time significance, the care environment impact and when the next of kin has a different opinion. The internal conditions for the nurse came up as the nurse's ability to involve next of kin, nurses' ability to develop their skills in the meeting with next of kin, the importance of communication and the ability to create teamwork. Discussion: With the 6 S:s as a theoretical basis, this literature review has been discussed from the basis of the background and other relevant literature. Next of kin are needed in the health care around the patient but it is not a guarantee that the next of kin`s wishes is the same as the wishes of the patients or the caregivers. For the nurse to use next of kin as a resource it requires clear communication and support from the nurse in the work towards a common goal of palliative care.

Bakgrund: Palliativ vård innebär att ge vård till patienter med en obotlig sjukdom samt tillstånd där patienten inte förväntas att överleva sjukdomen eller tillståndet. Hopp är viktigt att eftersträva inom den palliativa vården, där sjuksköterskan har en betydande roll. Det är svårt att förmedla hopp till svårt sjuka patienter, och därför är kunskapen om hur det kan förmedlas viktig. Syfte: Att beskriva hur sjuksköterskor förmedlar hopp till patienter i livets slutskede. Metod: En innehållsanalys gjordes där en kvantitativ och åtta kvalitativa vetenskapliga artiklar granskades. Resultat: De nio vetenskapliga artiklar som granskades resulterade i en kategori; kommunikation i palliativ vård med tre subkategorier; kommunikation om fokus på livet, sjuksköterskans närvaro vid kommunikation och kommunikation om döden. Slutsats: Resultatet i studien visar att kommunikation med patienter angående döden var en svårighet för sjuksköterskor. Där rädsla för att patienten skulle förlora hoppet helt är en stor del till varför sjuksköterskor valde att undvika att tala om döden. När sjuksköterskor har vågat bemöta patienten i fråga om döden påvisade detta positiva effekter hos patienten då de hade uppnått en acceptans av den obotliga sjukdomen och hade på så vis kunnat behålla hoppet. Studien påvisar vikten av att sjuksköterskor vågar kommunicera med patienten om döden. / Background: The definition of palliative care is to give treatment to patients with incurable disease when the patient is not expected to survive the disease. Hope is important to strive for in palliative care, where the nurse has a significant role. It is difficult to convey hope to critically ill patients, and therefore the knowledge of how it can be conveyed is important. Aim: To describe how nurses can convey hope to patients in palliative care. Method: A content analysis was made where nine scientific articles were audited. Results: The nine scientific articles that were audited resulted in one category; communication in palliative care with three subcategories; communication about focus in life, nurse’s presence when communicating and communication about death. Conclusion: The results of this study indicated that communication with patients about death was a difficulty for nurses. Where fear of patient losing their hope was a big part of why nurses choose to avoid talking about death. When nurses have had the courage to talk about death with the patient it has shown positive effects within the patient where they have reached an acceptance of the incurable disease and they have been able to keep their hope. The study has shown how important it is that nurses dare to communicate with patients about death.

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin’s experiences of guilt and shame in end-of-life care. Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin’s experiences of guilt (Study III), and shame (Study IV) in end-of-life care. Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self.  The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin’s self. Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Hospital-based specialist palliative care services are designed to address the needs of critically ill patients by psychosocial and spiritual support, improving symptoms management, and offering discussions on goals of care. Integrating palliative care upstream in the care continuum for patients who eventually die in the hospital will help to address the many individualistic needs of the critically ill patient. The diffusion of specialist hospital-based palliative care services requires an understanding of patterns of utilization by patients. The purpose of this study was to examine the population characteristics of decedents who may or may not have utilized specialist palliative care services in a hospital setting in order to develop a model of predictors of access to specialist palliative care services. The basic constructs of this study are grounded in the Behavioral Model of Health Services Use. Potential access is measured in terms of population characteristics, which include predisposing characteristics, enabling resources, and evaluated need. Building on this theoretical model, the study sought to better understand equitable and inequitable access to specialized palliative care services and to define which predictors of realized access were dominant. The research question asked was: What are predictors of access to specialized palliative care within a large urban public teaching hospital? A model of access to a palliative consult and a predictor of access to a palliative care unit were explored. Findings from this study revealed that factors encouraging access to a palliative care consult include older age, White non-Hispanic ethnic membership, a diagnosis with solid cancer and insurance. Factors encouraging access to a palliative care unit include older age, gender (female), insurance, and either a solid cancer or hematologic malignancy diagnosis.

Background: A growing number of older people, mainly women, live in single households. They represent avulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end oflife. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research Little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay athome even at the end of life. This paper aims to introduce the research protocol. Methods: We plan to apply a qualitative longitudinal study to better understand how older people living aloneand their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We willconduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 completedata sets and up to 200 personal interviews were planned. These will be complemented by regular telephonecontacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructingcase trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshopsshall assure quality and support knowledge transfer. Discussion: This study protocol aims to guide research in a field that is difficult to approach, with regard to itstopic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative Research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will beenhanced, which is of major relevance for future care planning. With investment in additional reflexivity andcommunication procedures innovative results and robust knowledge are expected outcomes.

Thesis advisor: Pamela J. Grace / As supported by extensive literature, nurses have a role to play in helping patients and families in getting their needs understood and met. This ethical responsibility includes decisions made by nurses in the context of end-of-life (EOL) care. Ethical decision-making is known to be influenced by nurses' understanding of their professional accountability and several cognitive processes that underlie moral action. Rest (1986) theorized these processes as: moral sensitivity, judgment, moral motivation, and moral character. However, few instruments have been developed to understand nurses' ethical decision-making during EOL care, and most have focused on a single dimension rather than on the multi-dimensional process. The purposes of this methodological study were: 1) to develop a scale with content domains and items capable of describing Korean nurses' ethical decision-making at EOL and 2) to evaluate the scale's psychometric properties using Korean nurses (N = 230). The criteria for participation were: Korean nurses having more than 2 years of clinical experience in the types of units where most Korean patients spend the end of their lives: critical care, general medical-surgical, and hospice units. The process followed two steps. Phase I consisted of the development of domains and items. Three domains were identified through themes derived from an integrated review of relevant literature and the findings from a preliminary qualitative study involving experts in EOL care in Korea. 95 items were generated within these three domains. Content validation was completed by a panel of six nursing ethics experts, three in Korea and three in the U.S. Next, a pilot study to test readability was conducted using three Korean nurses. During Phase II, 67 items of the NEDM-EOLCS version 3.0 were tested. After item analysis and factor analysis, a 55-item final version of the NEDM-EOLCS was established. The total scale and three subscales reported good reliability and validity. The three subscales were labeled: "perceived professional accountability," "moral reasoning and moral agency," and "moral practice at the EOL." / Thesis (PhD) — Boston College, 2009. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Bakgrund: Av Sveriges befolkning är ungefär 80 % i ett behov av palliativ vård. Majoriteten av dessa beskrivs vara äldre med en långdragen sjukdomsprocess. I ett palliativt vårdande ska sjuksköterskorna utgå från fyra hörnstenar, vilka Socialstyrelsen utvecklat från WHO:s riktlinjer. Enligt dessa ingår det i sjuksköterskans roll att lindra besvärande symtom, arbeta utifrån ett tvärprofessionellt teamarbete, ha goda kommunikationer och relationer samt att ge stöd till närstående. Syfte: Att belysa erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede. Metod: En litteraturöversikt gjordes där tio kvalitativa och kvantitativa artiklar användes till resultatet som belyser erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede. Sökningarna gjordes i databaserna, CINAHL Complete, PubMed och Medline with Fulltext. Artiklarna analyserades med hjälp av färgkodning. Resultatet: Resultatet visade på sjuksköterskors erfarenheter av att agera patientens advokat, vikten av att arbeta i ett vårdteam, sjuksköterskornas erfarenheter av att vara utbildad och föra sin kunskap vidare samt sjuksköterskornas erfarenhet att vilja främja hälsa. Diskussion: Metoddiskussionen belyser tillvägagångssättet, svagheter och styrkor. Resultatdiskussionen lyfts utifrån Watsons caritasprocesser som stärker det sjuksköterskorna återger, där relationen är en nyckelkomponent i vårdandet samt hur brister i kommunikationen kan förstås. Det framgick att sjuksköterskor hade olika erfarenheter av vård i livets slutskede och att de mer erfarna var de som kände sig tryggast. Ur detta ges egna reflektioner av det ideala vårdandet enligt Watson, och hur det kan användas i praktiken av sjuksköterskor.