Bakgrund: Det finns brister i sjukvårdsystemet inom palliativ vård. En anledning är att vårdpersonalen saknar tillräcklig utbildning. Den palliativa vården kan ses som ett lotteri – där nitlotten är att få vårdas i slutet av sitt liv av någon som endast har några timmars utbildning. Familjer kan uppleva livets slut som den mest smärtsamma fasen. Det är av betydelse att vårdpersonalen identifierar när patienten går in i fasen, vård i livets slut. Familjerna är i en utsatt situation, är sårbara och upplever brist på stöd och förståelse från vårdpersonalen. Syfte: Syftet var att beskriva hur familjer i vård i livets slutskede vill bli bemötta av vårdpersonal. Metod: Studien är en litteraturstudie baserad på aktuell kvalitativ forskning inom ämnet. Resultat: Data genomsyrades av att vårdpersonalen skulle bry sig om familjerna. Familjer ville att vårdpersonalen skulle se dem som unika individer och inte bli lämnade utanför. Det var viktigt att de blev tagna på allvar och blev förberedda på slutet. Familjer ville att vårdpersonalen skulle kunna visa känslor och skapa en personlig relation med dem. Slutsats: Trots att familjer i vård i livets slut inte förväntar sig mycket av vårdpersonalen så är det betydelsefullt för dem om vårdpersonalen bryr sig om dem. / Background: There are deficiencies in the healthcare system regarding palliative care. A reason is that healthcarers lack of education. The palliative care can be seen as a lottery - the blank is to be treated by someone with only a few hours education. Families can experience end of life as the most distressing stage. It is therefore important that healthcarers identify when the patient enter the end of life stage. These families are exposed, vulnerable and other experience lack of support and understanding from the healthcarers. Aim: The aim was to describe how the families would like to be treated by the healthcarers. Methods: The study is a literature review based on qualitative articles from current research. Results: The major finding was that healthcarers should care for the families. The families needed to be seen as unique individuals and not to be left behind. It was important to be taken seriously and to be prepared for the end of life. The families wanted that the healthcarers were able to show emotions and create a personal relation to them. Conclusion: Despite that the families in the end of life stage does not expect much from the heatlhcarers it is significant for the families if the healthcarers care about them.

Bakgrund: Passiv eutanasi innebär ett undanhållande eller tillbakadragande av livsuppehållande behandling och är både lagligt och etiskt godkänt i de flesta länder. Sjuksköterskan spelar en stor och avgörande roll vid passiv eutanasi då hen har en viktig roll gällande vårdandet av personer i livets slutskede och för att ge stöd och tröst åt deras anhöriga. Syfte: Syftet var att beskriva sjuksköterskors erfarenheter av att delta vid passiv eutanasi. Metod: Studien är en litteraturöversikt med induktiv ansats baserad på tio artiklar där en manifest innehållsanalys utfördes. Resultat: Analysen resulterade i fyra huvudkategorier; att ta ansvar, innefattar sjuksköterskans ansvar och dess konsekvenser, att vara en del i beslutstagandet innefattar sjuksköterskans behov av att få dela med sig av sin kunskap, att bli emotionellt påverkad beskriver hur vårdandet påverkar sjuksköterskorna och att ge vård vid livets slutskede, ger en bild av hur man ger ett värdigt avslut. I dessa kategorier återfanns även tolv underkategorier. Slutsatser: Den mest centrala delen av passiv eutanasi var att ge ett värdigt avslut. Detta kunde göras genom att få vara en del av beslutstagandet samt att se till de anhöriga och inkludera dem i vården. / Background: The meaning of passive euthanasia is to withhold or withdraw life-sustaining treatment and is generally both legally and ethically approved. The nurse plays an important and decisive role regarding passive euthanasia since he or she has a major role in the care of people in end-of-life as well as the care of their relatives/loved ones. Purpose: The purpose of this study was to describe nurses' experiences of participating in passive euthanasia. Method: This study is a literature review with an inductive approach based on ten articles on which a manifest content analysis was conducted. Results: The analysis resulted into four main categories; to take responsibility, contains the nurses’ responsibility and it’s consequences, to take part in the decision making illuminates the nurses’ urge to share one’s knowledge, to be emotionally affected outlines how the care affects the nurses’ and to provide care at the end-of-life stage portrays how to bestow a dignified death. Within these categories twelve subcategories arose. Conclusion: The most paramount aspect of passive euthanasia was providing dignity in dying. This could be done by taking part in the decision making and tending to the relatives/loved ones as well as including them in the care.

As the United States' population ages and grows more diverse, scholars and practitioners have grown increasingly concerned about persistent disparities in the cost and quality of end-of-life health care, particularly with regard to African Americans. Although a variety of factors may influence these disparities, most scholars agree that the underutilization of hospice care by this population is an important contributor. Drawing from the culture-centered approach to health communication and narrative theory, the present study explores African American patients and caregivers' experiences with hospice care and takes an initial step toward addressing disparities in end-of-life care. I begin this study, first, by positioning it within existing literature on health disparities and the underutilization of hospice care. I then outline the study's context and the ethnographic methods I used to complete it. Next, I discuss (a) participants' understanding of disparities in hospice utilization, (b) how participants' narrate their decisions about and experiences with hospice care, and (c) co-constructed solutions for addressing disparities in end-of-life care by creating partnerships between community members and local hospice organizations.

Bakgrund: När botande vård inte längre är möjligt krävs en klar och noga övervägd vård för att hjälpa både patient och närstående. Inom den palliativa vården ses döden som ett normalt skeende, och varken påskyndar eller skjuter upp döden. Vården ger individer stöd att leva med värdighet och bästa möjliga omvårdnaden i livets slutskede. I palliativ vård ses patienten och närstående som en helhet för att möjliggöra att de får den bästa möjliga vården. Syfte: Syftet är att utifrån ny forskning beskriva kommunikationen mellan sjuksköterska och närstående i palliativ vård. Metod: En litteraturöversikt som inkluderar både kvalitativa och kvantitativa artiklar. Resultat: Genom hela studien är hoppet en viktig aspekt, som diskuteras av både närstående och sjuksköterskor. Hoppet är viktigt för att hantera upplevelsen av död samt för att skapa en god relation mellan sjuksköterskor och närstående. En god relation kräver tid för samtal och förståelse. Resultatet presenteras i fem kategorier som tillsammans skapar en god helhetsbild av studien. Konklusion: Det är viktigt att sjuksköterskan är medveten om värderingar som är viktiga för de närstående då de kommunicerar. Sjuksköterskan ska leda konversationen, men närstående ska ges tolkningsföreträde. / Background: When curing care is no longer possible it requires a personal and deliberate approach in care to help both patient and relatives. In palliative care death is seen as a normal process, palliative care neither speed up or postpone death. Palliative care support people to live with dignity and welfare in the end of life. In palliative care patient and relative is seen as a unit, to guarantee that they receive the best care possible. Aim: To describe communication among nurse and relative in palliative care. Method: A literature review that includes both qualitative and quantitative articles. Result: Through the study hope is a great aspect of importance, discussed by both relatives and nurses. Hope is an important factor to deal with experiences of death and to create a good relation between nurses and relatives. A good relation requires time for conversation and understanding. The result is present in five categories that explain aspects of importance in communication. Conclusion: It´s important that nurses is aware of relative’s values of importance when they communicate. A nurse is supposed to guide the conversation but relatives should be given priority of interpretation.

Des décisions médicales en fin de vie sont souvent prises pour des patients inaptes. Nous avons souhaité connaître les argumentations éthiques entourant ces décisions difficiles. Notre objectif était de pouvoir comprendre et apprécier ces lignes d’argumentation. Pour atteindre cet objectif, nous avons répertorié et analysé les lignes argumentatives présentes dans des articles scientifiques, incluant les sections de correspondance et commentaires des journaux savants. Afin d’éviter que les résultats de notre analyse soient trop influencés par les caractéristiques d’un problème médical spécifique, nous avons décidé d’analyser des situations cliniques distinctes. Les sujets spécifiques étudiés sont la non-initiation du traitement antibiotique chez des patients déments souffrant de pneumonie, et l’euthanasie de nouveau-nés lourdement hypothéqués selon le protocole de Groningen. Notre analyse des lignes d’argumentation répertoriées à partir des débats entourant ces sujets spécifiques a révélé des caractéristiques communes. D’abord, les arguments avancés avaient une forte tendance à viser la normativité. Ensuite, les lignes d’argumentation répertoriées étaient principalement axées sur les patients inaptes et excluaient largement les intérêts d’autrui. Nous n’avons trouvé aucune des lignes d’argumentation à visée normative répertoriés concluante. De plus, nous avons trouvé que l’exclusion catégorique d’arguments visant l’intérêt d’autrui des considérations entrainait l’impossibilité d’ évaluer leur validité et de les exclure définitivement de l’argumentaire. Leur présence non-explicite et cachée dans les raisonnements motivant les décisions ne pouvait alors pas être exclue non plus. Pour mieux mettre en relief ces conclusions, nous avons rédigé un commentaire inspiré par les argumentaires avancés dans le contexte de l’arrêt de traitement de Terri Schiavo, patiente en état végétatif persistant. Nous pensons que l’utilisation d’un argumentaire qui viserait davantage à rendre les actions intelligibles, et sans visée normative immédiate, pourrait contribuer à une meilleure compréhension réciproque des participants au débat. Une telle argumentation nous semble aussi mieux adaptée à la complexité et l’unicité de chaque cas. Nous pensons qu’elle pourrait mieux décrire les motivations de tous les acteurs participant à la décision, et ainsi contribuer à une plus grande transparence. Cette transparence pourrait renforcer la confiance dans l’authenticité du débat, et ainsi contribuer à une meilleure légitimation de pratiques cliniques. / Medical decision making is often occurring at the end of life of inapt patients. We wished to learn about and appreciate the ethical arguments concerning these difficult decisions. Our objective was to understand and evaluate these lines of argument. To reach this objective, we have listed and analyzed lines of argument as they were presented in scientific articles, including the sections correspondence and commentary of scholarly journals. In order to avoid that our results are too much influenced by the specifics of one given clinical problem, we decided to analyze distinct clinical settings. The specific subjects studied are the non-initiation of antibiotic treatment for demented patients suffering from pneumonia, and active euthanasia of severely affected newborns following the Groningen protocol. Our analysis of the indexed lines of arguments from debates dealing with these specific subjects has revealed common characteristics. First, the issued argumentations had a strong normative tendency. Second, the indexed argumentation was principally oriented towards the patient himself, while largely excluding the interests of others. We found that none of the indexed normative lines of argument was compelling. Moreover, we found that the systematic exclusion of arguments based on the interests of others entailed the impossibility to evaluate them, and potentially to exclude them definitively from the considerations. It was thus also impossible to evaluate their potentially concealed persistence as a driving force motivating the decisions made. In order to illuminate these conclusions, we have written a commentary inspired by the lines of arguments evoked in the context of the treatment withdrawal of Terri Schiavo, a patient in persistently vegetative state. We believe that the use of lines of argument that render decisions intelligible, without however aiming at immediate normativity, could contribute to a better mutual understanding between the participants of such debates. Such argumentation also seems, in our opinion, more adapted to take the complexity and uniqueness of each single clinical case into account. We believe that such argumentation could better describe the respective motivations of the participants in the decision, and thus increase its transparency. Increased transparency would reinforce the confidence in the authenticity of the debate, and thus better legitimate clinical practice.

This study examined death and dying in assisted living (AL) and the various factors that influence these processes. The study is set in a 60-bed assisted living facility outside of Atlanta, Georgia. Data collection methods included participant observation and in-depth interviews with 28 residents and 6 staff. Data were analyzed using the grounded theory approach and focused on the 18 residents who were dying and/or died during the study period. Findings show that AL residents experience a variety of dying trajectories that vary in duration and shape; for the majority of residents, hospice is an important element in their death and dying experiences. In general, death is not communicated or acknowledged formally within the facility. Responses to deaths depend largely on the nature of the relationship the deceased resident had with others. Findings have implications for how to handle death and dying in AL and to improve residents‟ experiences.

Syfte:Syftet med litteraturstudien var att beskriva sjuksköterskors upplevelser av att vårda patienter i livets slutskede på sjukhusavdelningar. Metod:Beskrivande litteraturstudie som baserades på tretton vetenskapliga artiklar. Data inhämtades från databaserna Cinahl och Pubmed. Resultat:Att vårda patienter i livets slut på sjukhusavdelningar är en komplex situation. Sjuksköterskorna beskrev både upplevelser av tillfredsställelse och närhet samtidigt som de kunde känna sig otillräckliga. Relationer till patienter och närstående var betydelsefulla men en distansering var nödvändig för att behålla en professionell yrkesidentitet. Faktorer som påverkade upplevelserna var rädsla för den egna döden, tidigare erfarenheter, tidsbrist och den rumsliga miljön på avdelningarna. En betydande del av upplevelserna var av existentiell karaktär. Slutsats: Blivande sjuksköterskor och yrkesverksamma sjuksköterskor behöver vetskap om hur det kan påverka dem att vårda patienter i livets slutskede. Sjuksköterskor behöver få möjligheter att reflektera över sina upplevelser och sin attityd till döden för att kunna utveckla ett professionellt förhållningssätt. / Aim:The aim of this study was to describe the nurses’ experience of end of life care in a hospital setting. Method:The study was conducted as a descriptive literature study based on thirteen scientific articles retrieved from the databases Cinahl and PubMed. Resultat: End of life care in a hospital setting is a complex situation. Nurses described experiences of satisfaction and closeness at the same time as they had feelings of inadequacy. Relationship with patients and their relatives were meaningful but keeping a professional distance was necessary. Issues impacting on the experiences was nurses own fear of death, previous experiences, lack of time and the hospital environment. A significant part of the described experiences was of existential character. Conclusion: Future and working nurses need more knowledge of how caring for dying people can effect them. Nurses require opportunities to reflect on end of life care experiences and their own attitudes to death, in order to develop a professional approach.

No description available.

Advance Care Planning has been advocated for over 20 years as a way in which individuals who are no longer able to speak for themselves, may still convey their preferences regarding a wide of array of decisions, including medical care. Advance care planning may not be initiated by individuals for many reasons, and even when initiated, may not be specific enough to help guide decision making. Recent advance care planning models have utilized disease specific information to help guide end of life health care decision-making. Persons diagnosed with mild cognitive impairment face an increased possibility of developing dementia at some point in the future, but may retain decision making capability for a window of time, and thus the opportunity to participate in advance care planning. The advance care planning experiences of individuals with mild cognitive impairment have not been extensively studied. This study explored the advance care planning experiences of persons with mild cognitive impairment and their care partners' understanding and views of advance care planning, and if the diagnosis of mild cognitive impairment affects the advance care planning practices of these two groups. A convenience sample of 10 individuals with mild cognitive impairment and their 10 care partners (n=20) were recruited and interviewed. Using a grounded theory qualitative analysis approach, four themes were identified (1) decreased awareness regarding advance care planning from individuals with mild cognitive impairment versus a heightened awareness for the care partners; 2) the preference for comfort care measures only; 3) preferences for future end of life healthcare decisions largely influenced by previous end of life experiences with family and friends; and 4) lack of discussion of end of life healthcare decisions related to dementia and/or artificial nutrition and hydration by physicians or other healthcare providers. In addition two latent themes emerged including from the care partners, the importance of the mild cognitive impairment support group and lawyers for advance care planning and from both care partners and the mild cognitive impairment participants, trying to maintain autonomy, to `hang on' to self were identified. Study implications include the need for structured advance care planning interventions with individuals diagnosed with mild cognitive impairment to focus on common end of life scenarios, such as whether to use artificial nutrition and hydration, which will require future surrogate decision making.

This inquiry, which employed a narrative research approach, critically explored the ethical dimension of hospice palliative care. Hospice palliative care is the profession specifically developed to care for the dying. The development of this practice has grown significantly since the 1980s in Australia, yet ethical inquiry into this professional practice has largely focused on particular issues, problems or dilemmas, such as euthanasia. Although particular ethical issues are important considerations, a broader investigation of the ethics of hospice palliative care practice has not been given sufficient consideration in the growing accumulation of the research literature in Australia. Jennings (1997) surmises that “systematic reflection on ethics in the hospice field is curiously underdeveloped” (p. 2). This study goes someway towards filling this gap. In building upon the Pallium research by European scholars and integrating a social practice framework (Isaacs, 1998) this inquiry provides an alternative account of the ethical agenda and one which has privileged an internal exploration, rather than assume that the ethics would be the same as any other health care modality or to simply adopt a dominant, principles-based approach. These internal explorations were located in the storied accounts of thirty interdisciplinary hospice palliative care professionals. This thesis provides a thorough, textual conversation into the realm of ethical caregiving at the end of life. Several key insights were illuminated. Firstly, total care must be central to the philosophy underpinning hospice palliative care practice, but this concept and practice of total care was being eroded and contested. Secondly, a predominantly modernist account of personhood was located in the narrative accounts. This modernist account of personhood was thought to be insufficient for the practice of total care and needed to be reconceptualised. An embedded ontological account was provided which would assist with the understanding and practice of total care. Thirdly, initially it was thought that there was no common, shared understanding of the purpose of the practice. It was suggested that the profession was “wandering in the wilderness” when it came to the aim of its practice. However, the professionals did share a common telos (aim towards a good) and it was overwhelmingly relational. This led to the proposal of a new telos for hospice palliative care practice centered on the creation and maintenance of unique relationships which would assist people in their final stage of life. Lastly, the ethical frameworks which guided practice for the professionals were presented. In these frameworks it was significant values (acceptance of human mortality, total care and honest and open communication) and relationships (how we treat each other) which played the main role in what constituted hospice palliative care ethics. An account of a hospice palliative care ethical relationship was provided which included a proximity stance of in-between. Overall, any ethic for hospice palliative care must have at the heart the relationship between professional caregiver and living-dying person. The relationships in this social practice, between each other, accompanying one another, are our ethical compass. This thesis concluded that hospice palliative care, as a social practice, has a rich ethical dimension as understood and articulated by its professional members. These insights have resulted in the construction of a new ethical framework reflecting, formalising and adapting the ethical dimension as understood by its professional members. This ethical framework - A Relational Ethic of Accompanying - is needed to help maintain, sustain and protect the unique identity of this profession. This framework adds to the “moral vocabulary” (Jennings, 1997) and “moral specificity” (ten Have & Clark, 2002) of hospice palliative care practice. In addition, it would provide important guidance to palliateurs reflecting on how best to provide quality, compassionate and ethical care at the end of life.