Background: Critical care is a relatively young speciality with its intention to treat critical illness equally all around the world. Patients admitted to ICUs receive advanced treatments in order to save lives, however some patients will pass away during critical care, which put family members in great physical and emotional distress. It is important to support family needs and keep core principles of palliative care in mind in order for patients and family members to cope with current situation. The need for palliative care is greater than ever, but in most parts of the world it is poorly developed. Brazil struggles with several challenges regarding implementation of a palliative approach within ICU settings. Aim: the aim was to explore nurses’ experiences of palliative care, focusing on family involvement in Brazilian ICUs. Method: semi-structured interviews were analysed using content analysis. Five female nurses were included from one public and one private hospital in the city of Rio de Janeiro, with an average ICU working experience of nine years. Results: three main categories were identified describing nurses’ experiences of palliative care and family involvement: to care for a dignified death, to promote family involvement and areas for future improvement. Discussion: the results reveal that the nurses, even though lack of professional training, believe that palliative care is important for both patient and their family members at the EOL. Brazilian nurses also face several challenges in order to perform palliative care successfully within ICUs. They struggle with strict visiting policy and the perception of nurses being inferior to physicians. There is a wish for acknowledgement of the nursing profession during EOLC in Brazilian ICUs, since nurses spend most time at each patient’s bedside along with their family members.

Bakgrund: Inom neonatalvården idag är det ovanligt att barn dör, men när det sker innebär det en i många fall livslång kris för de föräldrar som drabbas. Neonatal palliativ vård omfattar en helhetssyn och fokus på hela familjen, vilket bidrar till att relationer mellan familjen och vårdpersonalen byggs upp. Det innebär också etiska dilemman och att ställas inför svåra beslut. Syfte: Syftet var att beskriva föräldrars erfarenhet av neonatal palliativ vård. Metod: En litteraturöversikt baserad på 12 kvalitativa artiklar som söktes fram i databaserna AMED, Cinahl, Medline och PsycINFO. Fribergs trestegsmodell användes för analys. Resultat: Åtta kategorier framkom: Att få möjlighet att vara nära; Att vara delaktig i att fatta beslut; Betydelsen av information; Att bli behandlad med respekt; Att lindra barnets lidande; Betydelsen av samtal och stöd; Att skapa minnen samt Sjukhusmiljöns betydelse. Slutsats: Föräldrarna har behov av att få vara delaktiga i barnets vård för att skapa minnen. De behöver information för att förstå och efterfrågar fortsatt kontakt med vårdpersonal och uppföljning efter dödsfallet. / Background: In today’s neonatal care, it is uncommon that babies die. When it happens, it is associated with a life-long crisis for the affected parents. In neonatal end-of-life care, the focus is on the entire family and on the relationships that occur between the family and the health care professionals. It is also related to the ethical questions and difficult decisions that take place in this situation. Aim: The aim was to describe parents´ experiences in neonatal end-of-life care. Method: A literature review consisting of 12 articles with a qualitative approach were made. Searches were made in the databases AMED, Cinahl, Medline and PsycINFO. Fribergs three step method for analysis was used. Results: Eight categories were found: To be able to be near; To be involved in making decisions; The importance of information; To be respected; To alleviate child suffering; The meaning of conversation and support; To create memories and The significance of the hospital environment. Conclusions: The parents have the need to be involved in the care of their dying child to create lasting memories. They need information to understand and they ask for further contact and follow-up meetings after the death of their child.

Bakgrund: Sjukhusens vårdavdelningar är den sista vårdplatsen för många människor, vilket innebär att många också dör i den kontexten. Organisationen är i huvudsak utformad för akutsjukvård och vård i livets slutskede är inte prioriterat, vilket gör att akutsjukvårdsmiljön är sämre utformad för den döende personen och närstående. Det finns behov av fler studier som fokuserar på vård i livets slutskede från dessa vårdkontexter.                                                                                                                                                                                                   Syfte: Syftet var att utforska närståendes erfarenheter av vad som är betydelsefullt i vårdmiljön inom akutsjukvården vid vård i livets slutskede. Metod: Den här studien är kvalitativ och designad utifrån tolkande beskrivning. Två akutsjukvårdsavdelningar i södra-mellersta Sverige rekryterades. Nio närstående, sex kvinnor och tre män, i åldrarna 23-63 år, deltog i studien. De blev individuellt intervjuade vid ett tillfälle. Vid intervjun användes fotoelicitering med utgångspunkt från bilder de själva hade tagit. Intervjuerna spelades in digitalt (ljud) och transkriberades ordagrant. Tolkande beskrivning användes för analys av materialet. Resultat: Närståendes erfarenheter av vårdmiljön presenteras i tre mönster, vilka är relaterade till varandra: Sensoriska upplevelser i den fysiska vårdmiljön som inkluderar visuella intryck, ljud och oljud samt ljus; Utrymme för privatliv och sociala relationer i den personliga vårdmiljön och avslutningsvis; Personalen som representanter för den institutionella vårdmiljön som omfattar förhållningssätt, möjliggöra orientering samt struktur och kontinuitet. Slutsats: Studien påvisar tre mönster som omfattar närståendes erfarenheter av det som är betydelsefullt. Betydelsen av sensoriska upplevelser, privatliv och sociala relationer samt personalen förhållningssätt och agerande beskrivs. Erfarenheter i och av vårdmiljön kunde öka eller minska deras stress i en svår livssituation. Utifrån dessa fynd är det av stor betydelse med ökad medvetenhet hos personalen om hur viktig vårdmiljön är och att miljön för vård i livets slutskede vid akutsjukvårdsavdelningar behöver uppmärksammas och tas om hand i större omfattning. / Background: Hospitals are and will continue to be the last place for care for many people, which also means that a lot of people die in these settings, within organizations for acute care. The main focus is not care at end-of-life and it is not prioritized, which means that these acute care environments not are adapted to the needs of dying persons and family members. More studies aiming at end-of-life care in acute care settings are needed.              Aim: The aim with this study was to explore important dimensions of the care environment in acute care settings from family members´ perspective during end-of-life care.                                                                Method: The design for this study was qualitative and used interpretive description. We recruited two acute care units from different hospitals in south-mid Sweden. The participants were nine family members, six women and three men, aged 23-63 years. They were at one occasion individually interviewed with the use of photo-elicitation and these photographs were participant-produced. These interviews were digitally audio-recorded and transcribed verbatim. The interviews were analysed with interpretive description.                                               Findings: These findings show family members´ experiences of the acute care environment, as described in three, interrelated patterns: Sensory experiences in the physical care environment including visual impressions, sound and noises, lighting; Space for privacy and social relations in the personal care environment; and Staff as representatives for the institutional care environment including attitude and manner, orientation, and structure and continuity.                                                                                                                                                              Conclusions: According to these findings three patterns are described from family members´ perspective, increasing or decreasing their distress in a demanding situation. Sensory experiences, privacy and social relations are of importance, just as staff. In line with these findings it is crucial with increased awareness among staff of how important the care environment is and the need for focusing more on and taking care of the end-of-life care environment in acute care settings. / Forskningsprogrammet DöBra / Plats och rum för vård i livets slutskede

The starting point of the present thesis is nurses’ reported experiences of disagreements with physicians for pushing life sustaining treatment too far. The overall aim was to describe and compare nurses’ and physicians’ perspectives on the boundaries for life-sustaining treatment and to evaluate whether ethics rounds could promote mutual understanding and stimulate ethical reflection. A mixed methods design with qualitative and quantitative data was used, including interviews and questionnaires. The health professionals’ experiences/perceptions were based on known patients foremost from general wards, but also intensive care units, at four Swedish hospitals. The first two studies treated the perspective on boundaries for life-sustaining treatment and the last two evaluated philosopher- ethicist led ethics rounds. Analysis of data was performed using a phenomenological approach and content analysis as well as comparative and descriptive non-parametric statistics. In the first study, the essence of the physicians’ decision-making process to limit life-sustaining treatment for ICU patients, was a process of principally medical considerations in discussions with other physicians. In the second study, there were more similarities than differences between nurses’ and physicians’ opinions regarding the 714 patients studied. The physicians considered limited treatment as often as the nurses did. The ethics rounds studies generated mixed experiences/perceptions. It seemed that more progress was made toward the goal of promoting mutual understanding than toward the goal of stimulating ethical reflection. Above all, the rounds seemed to meet the need for a forum for crossing over professional boundaries. The most salient finding was the insight to enhance team collaboration, that the interprofessional dialogue was sure to continue. Predominating new insights after rounds were interpreted as corresponding to a hermeneutic approach. One of nurses’ negative experiences of the ethics rounds was associated with the lack of solutions. Based on the present findings, one suggestion for improvement of the model of ethics rounds is made with regard to achieving a balance between ethical analyses, conflict resolution and problem solving. In conclusion, the present thesis provides strong evidence that differences in opinions regarding boundaries for life-sustaining treatment are not associated with professional status. The findings support the notion of a collaborative team approach to end-of-life decision-making for patients with diminished decisionmaking capacity. There is an indication that stimulation of ethical reflection in relation to known patients may foremost yield psychosocial insights. This could imply that social conflicts may overshadow ethical analysis or that ethical conflicts and social conflicts are impossible to distinguish.

The objectives of this thesis were to explore the effects of receptive individualised live and recorded-music on interactions within participating dyads consisting of a person with dementia who was in their final phase of life (resident), and a person with whom he or she shared a close connection (carer), as well as on each individual participant. A 'Receptive' music intervention is one where participants are not required to do anything but listen. METHODS The conceptual frameworks of realist evaluation, ethnography, symbolic interactionism, and dramaturgical actionism influenced the design of this study. There were two phases: during phase-1, fifteen semi-structured interviews were conducted with 'key-consultants', who were specialists in topics related to this thesis, to inform the design of 'phase-2'. During 'phase-2', musical interventions were conducted at five non-NHS care homes in Scotland over a period of nine-months. Each intervention consisted of either individualised live-music (3 sessions) or the same or similar music pre-recorded (three sessions); all music was played by the researcher on the solo cello. Interventions took place in residents' private bedrooms, and lasted between fifteen and seventy-minutes. The order of live and recorded-music interventions was switched for approximately half the dyads. Each intervention was video-recorded for later observation. Semi-structured interviews and Visual Analogue Scales (VAS) were administered with each participating carer before and after the conclusion of their series of interventions, to compare their expectations with their actual experiences and to better understand their experience. Whenever possible, key-staff and managers were also interviewed to learn what their perceptions of this study had been: its effects on them and on participants. ANALYSIS required repeated visits to the raw data: beginning with thickly-describing all video-footage; then thematically coding all thick-descriptions and transcribed audio-interviews; and lastly revisiting all video-footage via a self-modified version of an evaluative observation instrument; 'Person Interaction Environment Care Experience in Dementia' (PIECE-dem). FINDINGS support prior research regarding the beneficial effects of individualised receptive music on listeners who have dementia. This study suggests that both live and recorded-music promote wellbeing, and enhance dyad interaction in the moment of listening. These findings demonstrate the potential for receptive music to create an embodied sense of 'haven' for people with dementia who are nearing the end of life and for those sharing the experience with them: by capturing and holding their attention, and transporting them either back in time, or entirely out of time into a state of 'flow', or into an 'intense musical experience'.

ABSTRACT Background: For patients with life-limiting illnesses, having adequate knowledge of prognosis can strongly impact the choice between curative and supportive treatment. Objectives: The purpose of this research study is to explore patient understanding of prognosis and to illuminate the experience of having or not having prognostic information in people diagnosed with life-limiting illnesses. This study aims to investigate the patient's understanding of the term "prognosis", the significance of the term "prognosis" to the patient, and how prognosis may or may not affect future treatment choices. In addition, this study aims to further understand the experience of prognostic communication between provider and patient. The over-arching goal is to capture the personal perspectives of participants with a view to exploring their experiences around knowledge of their prognosis. Methods: A qualitative research design using a phenomenological approach was employed to examine how people experience prognosis. An invitation to participate in the study was publically announced via local newspapers, social media venues, and word of mouth. Participants who responded to study advertisements and who met inclusion criteria were asked to participate in one interview answering open-ended questions aimed at examining their experience with and knowledge of their prognosis. In addition, questions about prognostic communication between patient and health care provider were explored. All interviews were recorded, transcribed verbatim and analyzed using phenomenological methods. Results: Three study participants met the study criteria and were interviewed. Several themes emerged from the data including 1) patients have need for information about their illness, 2) prognostic data inform treatment choices, 3) patient experiences are unique and 4) patients feel a connection to nurses involved in their care. Conclusions: This study illuminated the patients' desire and need for information during their illness, the desire for patient autonomy, the difficulty of starting and having prognostic conversations, the downstream impact of having prognostic information, and the important role that nurses play for patients facing serious health issues. It is hopeful that the themes identified during the course of this research ultimately contribute to the knowledge base by informing healthcare providers on the importance of conveying prognostic information in a timely, direct, and sensitive manner.

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.

Enjeux éthiques de la fin de vie dans la médecine moderne et traditionnelle : cas du Gabon. Si la médecine moderne héritée de la Colonisation, est parvenue à s'établir au Gabon, elle n'a néanmoins pas éclipsé totalement la médecine traditionnelle héritée des Ancêtres. Deux héritages cohabitent ainsi chaque jour à la faveur des personnes en quête de soin de plus en plus croissante. Quelle est leur efficace ? La médecine moderne et la médecine traditionnelle ont-elles les moyens suffisants de venir à bout de toutes les maladies, de toutes les souffrances qui rongent notre humanité ? Comment réagissent-elles quand elles ne peuvent plus pouvoir ? Comment construisent-elles la relation de soin ? Est-ce que le statut de celui qu'on appelle « mourant » ou malade en fin de vie signe la fin de l'humanité ou le commencement de celle-ci ? Y a-t-il une fatalité à la condition de mourant, ou, la fin de vie traduit-elle l'idée d'une fin inéluctable de toute vie ? Ce sont les questions que cette thèse traite de bout en bout à partir d'un seul angle d'attaque : l'éthique. Autrefois considérée comme étude des vertus, doctrine de la vertu ou encore comme une « métaphysique des mœurs » qui se réservait le droit de postuler les principes devant régir la vie de la communauté humaine au-delà des valeurs culturelles et des positions idéologiques, l'éthique sur la base de laquelle prend ancrage ce travail est une réflexion philosophique sur la condition humaine. Cette éthique répond à la question socratique « qu'est-ce que l'homme ? », et répond qu'il est tout être vivant devant le visage duquel nul ne peut se dérober, et qui, de surcroît, interdit le meurtre. Cette éthique à visage humain est celle de la fin de vie par quoi chacun est confronté au regard de l'Autre homme, qui se retrouve accablé par l'existence dans la situation de la maladie mortelle, de la souffrance qui atteint son être et de la douleur qui maltraite sa chair. Cette éthique est celle de la relation de deux êtres : l'un qui est en demande de soin et l'exprime au travers de l'Appel, et l'autre qui est en capacité d'offrir ce soin par son savoir et son savoir-faire, et qui Répond à cet Appel en disant : me voici ! Cette éthique à visage humain renvoie chacun à lui-même, à sa propre condition de mortel à partir de l'épreuve de l'Autre en tant que mourant. Dès lors, chacun est confronté à l'idée que la médiation instaurée par le visage du mourant n'est pas donnée, mais est à construire. Par quoi l'éthique de la fin de vie dégage l'horizon d'une philosophie de la réflexion où c'est Autrui qui me donne à être. / The stakes of ethics at the end of life in modern and traditional medicine : A case study of Gabon.Though the colonization inherited modern medicine has successfully been established in Gabon, it has, nonetheless, not completely eclipsed the traditional medicine derived from the ancestors .Therefore, two legacies coexist day by day in order to cater to an ever increasing number of people seeking health care. How effective are they? Does either type of medicine have substantial means to come to term with all the illnesses and sufferings that plague mankind? What happens when they could no longer provide treatment? How do they develop health care relation? Does the case of the so-called "dying person" or rather, terminally ill patient mark the end of humanity or does it represent the beginning of this one? Is the dying person doomed or does death means an inescapable end of any kind of life? These are the questions that this dissertation thoroughly addresses upon the basis of one point : Ethics. It was formerly known as the study of virtue, the doctrine of virtue, or best yet "metaphysics of morals". Ethics was entitled to postulate principles aimed to rule human community life beyond human values and ideological stances. Ethics from this thesis' perspective is based upon a philosophical theory concerned about human condition. It is an answer to a the following Socratic question :" What is Mankind?" The answer being that he's every human being in the face of whom no one can escape and who, moreover, forbids murder. It's ethics with a human face; when at the end of life each person will have to come face to face with the other when they are fatally ill, and experiencing sufferings and pain to the core of their being. This ethics epitomizes the relationship between two beings : One who is seeking treatment and expresses it through a call, while the other is able to provide that treatment through his awareness and expertise. He responds to that call by saying : Here I am. Ethics with a human face takes every one back to their true selves; to their own mortal condition thanks to the ordeal of the other as a dying person. As a result, everyone will have to grapple with the idea of mediation instilled in them by the face of the dying person is not given but built. Ethics of the end of life gives way to a wide array of philosophical thought where it is the other that gives me life.

Criminal aspects of advanced directives and Do Not Resuscitate orders Abstract The aim of this thesis was to analyse current legal regulation of advanced directives and Do Not Resuscitate orders, particularly of their criminal aspects. These legal concepts are relatively new in the Czech law, therefore there are still many questions about them and Czech law unfortunately does not offer definite answers. In the first chapters I focused on general criminal aspects of provision of health services. I analysed conditions of criminal liability in connection with health services, with emphasis on the principle of subsidiarity of criminal prosecution. In this part I also addressed the issue of mercy killing, by another name euthanasia and its differentiation from other types of end-of-life decision making. In the second chapter, I approached the matter of criminal liability of providers of health care services, as legal persons, which became after the last amendments in this area significant also for health care. The following chapters were dedicated to advanced directives. At first, I analysed this legal concept in the matter of civil law, which is essential for its comprehensive interpretation. I tried to identify the main ambiguities of the legal regulation, whether regarding new regulation of substitute...

Bakgrund: Nästan 90 procent av alla som årligen avlider i Sverige är 65 år eller äldre och det egna hemmet är den plats många önskar att få palliativ vård i. Sjuksköterskan skall ha ett holistiskt förhållningssätt i vården av den döende patienten och yrkesansvaret innefattar att lindra lidandet, ett värdigt bemötande av patienten och personcentrerad omvårdnad.  Syfte: Att beskriva sjuksköterskans upplevelser av vård i livets slutskede för äldre patienter i hemmet Metod: En litteraturöversikt har genomförts där nio kvalitativa och en kvantitativ artikel inkluderats och som inhämtats från databaserna CINAHL Complete, Ageline och PubMed. Artiklarna kvalitetsgranskades, analyserades och kategoriserades med utgångspunkt i Fribergs  analysmetod. Resultat: Fyra teman uppkom Känslomässiga erfarenheter, Vårdrelationens betydelse, Teamarbetets betydelse och Behov av stöd och utbildning. Sjuksköterskor beskrev både positiva och negativa upplevelser av vård i livets slutskede för äldre patienter i hemmet. Sjuksköterskorna kände en meningsfullhet i den palliativa vården där de skapade en stark relation till den döende. De negativa upplevelserna grundade sig i yttre faktorer som gjorde att sjuksköterskorna kände sig maktlösa och utsatta i sin yrkesroll. Sjuksköterskorna uttryckte bristande samarbete i teamarbetet samt behov av stöd och utbildning från arbetsgivare. Diskussion: Metoddiskussionen beskriver styrkor och svagheter i litteraturöversikten. Resultatet diskuterades utifrån bakgrunden och tidigare forskning samt valda delar av Katie Erikssons teori om vårdande, lidande och begreppet hälsa. / Background: Almost 90 percent of the total amount who dies annually in Sweden is 65 or older and their own home is the place that many choose getting palliative care in. The nurse should have a holistic approach in end of life care and the professional responsibility include alleviate the suffering, a dignified treatment of the patient and person-centered care.  Aim:To describe the nurse experience of palliative care to elderly patients in their home.  Method: A literature review has been carried out in which nine qualitative and one quantitative article were included. They were extracted from the databases CINAHL complete, Ageline and PubMed. The quality of the articles follows the guidelines of Friberg’s analysis method.  Results: The analysis resulted in four themes Emotional experiences, Importance of nurse-patient relations, Importance of teamworkand Need of support and education. The nurses described both positive and negative experiences of end of life care to elderly patients in their home. The nurses felt satisfaction in end of life care where they created a strong relationship with the dying patient. The negative experiences were based on external factors that made the nurses feel powerless and vulnerable in their professional role. Discussion: The method discussion raises strengths and weaknesses in the literature review. The authors discussed the results based on the background and previous research, along with parts of Katie Eriksson’s theory of caring, suffering and the concept of health.