Dans un contexte de transformation du champ médical, la prise en charge hospitalière de la fin de vie devient un objet central de préoccupation dans les années 1970. La médecine palliative, qui s’institutionnalise en 1986, vise à y répondre en développant des accompagnements holistiques de la souffrance (physique, sociale, psychique et spirituelle) des patients en fin de vie et de leurs proches. Cette approche globale du soin modifie l’organisation du travail et fait primer la temporalité des phénomènes pathologiques sur leur spatialité, interrogeant l’épistémologie médicale dans son ensemble. Les Unités de Soins Palliatifs (USP), dédiées aux patients dont les traitements à visée curative ont été arrêtés, conservent une place caractéristique parmi les différentes structures palliatives. À partir d’une enquête qualitative menée au sein d’une USP, cette recherche a d’abord cherché à faire entendre la voix des professionnelles qui, bien souvent, aspirent en premier lieu à retourner le stigmate attaché à leur activité. Ce travail ethnographique s’est, en particulier, attaché à analyser la dimension spatiale des rapports sociaux. Conçu comme des dispositifs de lutte contre le « tabou de la mort » et, par là, d’annonce de la mort à venir, les USP matérialisent le temps par l’espace. Cet aménagement se double, dans les prises en charge, d’une matérialisation par les corps. Ainsi, le corps du patient devient le support autour duquel vont se tisser les liens et s’affirmer les identités. Ce faisant, les USP posent la question de la ritualité contemporaine, non pas tant par leur forme que par leur fonction. Du fait de sa position liminale, le cadavre cristallise ici des désirs ambivalents de maîtrise et de déprise. Le travail spécifique des soignantes paramédicales, de l’agonie à l’exposition post mortem du corps, est à ce titre révélateur. À travers l’analyse de leurs pratiques, l’enquête montre une résistance anthropologique, par-delà tous les changements sociologiques qui entourent les conditions de la fin de vie et les recompositions des logiques institutionnelles et de la division du travail à l’approche de la mort. / Hospital end of life care becomes an object of concern since the 1970’s, in the context of major transformations of the medical field. Institutionalised in 1986, palliative medicine intends to address this concern, by developing care that offers a holistic approach, taking into account different aspects of the suffering (physical, social, psychological and spiritual) of end of life patients and their relatives. Such a global approach to care modifies work organization. It places the temporality of the pathological phenomena over their spatiality, thus questioning medical epistemology as a whole. This research focuses on Palliative Care Units, exclusively dedicated to patients whose curative treatments have been stopped. It is based on a qualitative inquiry within one of these Units. First aimed at making the professionals’ voices heard, it conveys their wish to reverse the stigma attached to their activity. This ethnographic work focuses in particular on the analysis of the spatial and material dimension of social relations. Palliative care units are conceived to fight the “taboo of death”. Thus, they announce the upcoming death as they materialise the progression of time through the organisation of space. This materialisation occurs also through the bodies, as the patient’s body becomes the location upon which relationships and identities are structured. Studying the function of Palliative Care Units thus allows to question contemporary rituality. Because of its liminal position, the corpse crystallises ambivalent desires of control and disengagement. The work of paramedical caregivers, from the agony to the post mortem exhibition, is in that aspect especially revealing. Through the analysis of caregivers’ practices, this work shows an anthropological resistance, despite the major sociological changes surrounding end of life such as the transformations of the institutional logics and of the division of labour.

Bakgrund: Palliativ vård innebär en helhetsvård som ska lindra lidande och främja hälsa trots sjukdom. Sjuksköterskan ska arbeta personcentrerat och utgå utifrån “de fyra hörnstenarna” som innehåller: symtomlindring, samarbete, kommunikation och stöd till anhöriga. Metod: Den valda metoden var en litteraturöversikt av elva kvalitativa vetenskapliga artiklar som svarade på syftet. Syfte: Syftet var att belysa sjuksköterskors upplevelse av palliativ vård i hemsjukvård och i särskilt boende. Resultat: I studien framkom fyra teman och åtta underteman. Resultatet visade att sjuksköterskan upplevde vikten av ett gott samarbete med kollegor, patient och anhöriga som avgörande för en god palliativ vård. Erfarenhet har också visat sig vara viktig både i den nuvarande vården och för framtida vård av palliativa patienter. Många känslor uppkom i vårdandet och var både positiva och negativa. Konklusion: Att vårda patienter i ett palliativt skede kräver kunskap och erfarenhet och många faktorer påverkade hur vården utfördes / Background: Palliative care means comprehensive care that is intended to alleviate suffering and promote health despite illness. The nurse must work person-centered and start from the "four cornerstones" that contain: symptom relief, cooperation, communication and support for relatives. Method: The chosen method was a literature review of eleven qualitative scientific articles that answered the purpose. Aim: The aim was to shed light on nurses’ experince of palliative care in home care and in special housing. Results: The study revealed four themes and eight sub-themes. The results showed that the nurse perceived the importance of good collaboration with colleagues, patients and relatives as crucial for good palliative care. Experience has also proven to be important both in the current care and for future care of palliative patients. Many emotions arose in the care and were both positive and negative.Conclusion: Caring for patients in a palliative care stage requires knowledge and experience and many factors influenced how the care was performed

Abstract Background: Access to adequate palliative care has been identified as a challenge globally, in Canada, and in the province of Ontario. While pockets of excellence exist, there is a national call for allocation of resources and implementation of best practices to improve the care for individuals with life limiting illnesses. Furthermore, the location of care along with a desire for dying at home has shifted responsibility onto family members often without the equivalent shift in community resources to meet patient and family needs. To respond to issues of access and quality, nurse practitioners (NPs) have been increasingly added to diverse practice settings across the globe and research showing how they are contributing to diverse care settings. As a strategy to improve community palliative care locally, NPs have been added to community settings in Ontario. However, because NPs are new to palliative care settings little is known about how NPs enact their role within this unique context. NP role enactment is defined as the actual activities that NPs engage in that constitute their daily work. Aim: The purpose of this study is to better understand how NPs enact their role as consultants in a specific community palliative care setting in Ontario. Methodology and Methods: A focused ethnography was conducted in one specific geographic health administration region of Ontario between July of 2018 and October of 2020. A convenience sample was used recruiting NPs from one community palliative care consultation team. Data collection methods included observation (487.5 hrs over 89 discrete observation sessions, distributed across 7 study participants), fieldnotes and semi-structured interviews with participants (n = 7 NPs). Results: The NPs enacted their role with patients by formulating relationships, that for them, facilitated a deeper understanding of the patient and family situation, strengths, challenges and desires. Using conversations and conversational skills to have difficult and important conversations, NPs facilitated future planning for patients. Conversations also included addressing questions about MAiD, which were nuanced and often about more than MAiD, also addressing fears of suffering and uncertainty. The NPs used advanced clinical judgment and skill to diagnose and treat complex and difficult to manage symptoms and supported families to understand complicated medication regimes. Valuing their role as educators, the NPs supported their peers by offering teaching and providing clinical support in complex care scenarios. Pull together disparate and loosely connected care providers, NPs created a shared understanding of patient needs. Deficiencies in community care resourcing and organization made it difficult at times for NPs to facilitate continuity in care or to build capacity. The NPs often navigated an environment where nursing staffing was transient, inconsistent and overextended and where physicians were inconsistently available to support rapidly evolving situations. Conclusion: Findings suggest that NPs have an important role to play in supporting patients and families as well as supporting their nursing and physician colleagues. Furthermore, the broader system would benefit from embedding palliative care NPs more systematically. However, broader structural enhancements like shared communication and documentation mechanisms and adequate staffing across care settings need to be addressed to maximize the potential contributions NPs are able to offer.

Background: The population is growing, which places higher demands on palliative care and the need for knowledge development in nursing. Suffering is a big part of living with a terminal illness and relive suffering is part of the nurses' area of responsibility. It is of value for nurses to get insight into the patients' world of life, to provide individual palliative nursing measures. The aim in nursing is to promote quality of life through person-centered care. Aim: The aim of this study was to describe adult patients' experiences of suffering and alleviation in palliative care. Method: The study was based on a qualitative literature study, with six scientific articles. The articles were selected from the databases Cinahl and PsycInfo, with delimitations for Peer- Reviewed, adults, English language and published between 2013-2023. To analyze the articles, the five-step model of Friberg (2017) was used. Results: Three themes emerged from the analyses: Emotional suffering, Physical suffering and Close to death. This study showed patients different and similar experiences of suffering and alleviated suffering at the end of life. Reliving experiences was based on preparation for death, be treated with respect and compassion, be seen and heard, discuss thoughts about life and death and maintain the activities of importance. Conclusion: By providing compassionate care, active listening, and being genuinely interested in the patients' wellbeing, increased patients' experience of life quality and gave them a sense of relief. The care measures should be individually tailored due to every patient’s unique needs. It is therefore important for nurses to have a knowledge of how suffering could appear and choose fitting palliative care measures to reach the goal of relieved suffering

- / Palliative care, since its inception over 60 years ago, has set the standard of how to care for people who are dying. Key features among these standards have been the professional development of clinical specialisms such as palliative medicine and palliative nursing; the essential addition of the multidisciplinary team to these two new specialisms that included social, spiritual and allied health workers—an outgrowth of the recognition that routine work with the dying, their carers, and the bereaved required more than solely clinical skills; and the unique partnership with communities that yielded the volunteer movement within palliative care. Professional, evidence-based symptom management and the importance of supportive care in its widest possible sense were and remain the cornerstones of the modern palliative care approach. However, the majority of people with terminal illnesses do not have access to palliative care teams, whose main focus of care remains patients with cancer. In the context outlined above this paper therefore poses two key questions: how can we provide an equitable level of care for all people irrespective of diagnosis and how can we increase the range and quality of non-medical/nursing supportive care in a context of diminishing resources? We argue that an important opportunity and solution can be found by adopting the principles of a public health approach to end-of-life care.

Hintergrund: Patienten mit hämatologischen Neoplasien sind in den spezialisierten palliativmedizinischen Versorgungsstrukturen im Vergleich zu Patienten mit soliden Tumoren unterrepräsentiert. Im Falle eines palliativmedizinischen Einbezuges erfolgt dieser deutlich später. Hierfür werden verschiedene Gründe diskutiert: Schwierigkeiten in der Prognosefestlegung, das Auftreten von akuten Komplikationen und plötzlichem Krankheitsprogress oder die Notwendigkeit von fortgesetzten invasiven Therapiemaßnahmen. Methodik: In dieser Studie wurden die deutschlandweit erhobenen Daten der Hospiz- und Palliativerhebung (HOPE) von 2006 bis 2008 sekundär ausgewertet, um die klinische Charakteristik und spezielle Therapie- und Versorgungsaspekte von hämatologischen Patienten in spezialisierten Palliativeinrichtungen zu analysieren und mit denen von Patienten mit überwiegend soliden Tumoren sowie mit den prospektiv gewonnen Daten von inkurabel hämatologisch erkrankten Patienten der Abteilung für Hämatologie und Onkologie der Universitätsmedizin Göttingen ohne Anschluss an eine palliativmedizinische Versorgung zu vergleichen. Ergebnisse: Von den insgesamt 5.487 in der HOPE-Erhebung erfassten Palliativpatienten wiesen nur 220 Patienten (4%) eine maligne hämatologische Grunderkrankung auf. Es wurden 50 inkurabel erkrankte hämatologische Patienten der Klinik für Hämatologie und Onkologie erfasst, die einen deutlich besseren Allgemeinzustand und subjektives Gesamtbefinden aufwiesen, weniger fokale Symptome, zeigten, jedoch häufiger an psychischen Symptomen litten, als die Patienten in den palliativmedizinischen Einrichtungen. Hämatologische Patienten erhielten deutlich mehr interventionelle Therapiemaßnahmen wie fortgesetzte palliative Chemotherapie oder Transfusionen. Diskussion: Die Ergebnisse dieser Arbeit zeigen die spezifischen Charakteristika und Bedürfnisse von Patienten mit fortgeschrittenen malignen hämatologischen Grunderkrankungen und machen so die speziellen Anforderungen an die palliativmedizinische Versorgung dieser Patientengruppe deutlich. Auch auf Grundlage dieser Erkenntnisse bedarf es der Entwicklung von neuen, flexiblen Behandlungskonzepten, um hämato-onkologischen Patienten den Zugang zur Palliativversorgung zu erleichtern bzw. eine frühere und bedürfnis- anstatt prognoseorientierte palliativmedizinische Mitbehandlung zu ermöglichen.

Die Studie evaluiert die Arbeit des Ambulanten Hospiz- und Palliativ-Beratungsdienstes (AHPB) am Hospiz Villa Auguste in Leipzig. Der AHPB betreut Palliativpatienten in der Häuslichkeit. Er versteht sich als Hilfe zur Pflegeüberleitung an Schnittstellen der Versorgung (z.B.: Krankenhaus - Entlassung nach Hause). Ziel der Studie war eine wissenschaftliche Begleitung der Arbeit des AHPB. Seine Struktur-, Prozess und Ergebnisqualität wurden evaluiert. Als ein Schwerpunkt der Studie wurde besonders die Rolle der Angehörigen in der häuslichen Versorgung betrachtet. Es wurde auch untersucht, welche Unterstützung sie von der Brückenschwester erfuhren. Im Rahmen der Interviews wurden sie zur Zufriedenheit mit dem Dienst befragt.

Varje år är omkring 40 miljoner människor runt om i världen i behov av palliativ vård. Att som sjuksköterska vårda patienter som befinner sig i livet slut är en speciell vårdform. Målet för vården inte längre är att bota utan att lindra lidande och stödja patienten i den sista tiden i livet. Syftet var att belysa sjuksköterskors upplevelser av att arbeta i palliativ vård. Metoden som användes var en litteraturstudie som grundades på 13 vetenskapliga artiklar. I resultatet framkom två teman Att göra gott för patient och närstående och Att inte räcka till. Sjuksköterskorna strävar efter att ge personcentrerad omvårdnad, skapa vårdrelationer, vilket bidrar till arbetstillfredställelse. Därför bör mer utbildning inom palliativ vård ingå i sjuksköterskors utbildning för att stärka professionen och sjuksköterskors självkänsla. / Every year there are about 40 million people around the world in need of palliative care. For a nurse it is a special form of care to care for these patients in their end of life. The goal is no longer to cure but to ease and to aid the patient in it's last days of life. In this study, the purpose was to shed light on nurses experiences of working in palliative care. The method used was a literature study based on 13 scientific articles. The result showed two themes, one, To make the patient and their loved ones feel comfortable, and two, To not be enough. The nurses are committed to give personalized care, make care relations, which makes for work satisfaction. Therefore should more education about palliative care be a part of a nurses education, to strengthen the profession, and nurses self-esteem.

Bakgrund: Tack vare en mer avancerad hemsjukvård har den palliativa vården utvecklats, vilket gör det möjligt för fler människor att dö i det egna hemmet. Palliativ vård handlar inte endast om patienten, utan involverar även de anhöriga. Det övergripande målet för palliativ vård är att patienten och den anhörige upplever god livskvalitet till livets slut. De anhörigas närvaro är betydelsefull, inte endast för patienten utan även för vårdarna. De anhöriga befinner sig i en mycket påfrestande situation och det är viktigt att vårdare har kunskap om vad de anhöriga upplever och hur man kan stötta de anhöriga i deras situation. Syfte: Att belysa anhörigas upplevelser av delaktighet i samband med palliativ omvårdnad i hemmet. Metod: En litteraturstudie baserad på 11 vetenskapliga artiklar av kvalitativ ansats. Resultat: 2 kategorier framkom ur studien. Delaktighet ger anhöriga upplevelsen av att få vardagen att fungera och Anhörigas delaktighet bidrar till personcentrerad vård. Det blev en drastisk förändring i livet för de anhöriga. Det var inte bara hemmet som förändras i och med all teknisk utrustning och hjälpmedel som patienten behövde. De anhörigas livsförändringar gjorde att det sociala livet fick lida. Tankar kring existentiella frågor dök upp när man levde så nära inpå döden och det var viktigt för de anhöriga att vårdarna kunde se och lyssna även på deras behov. En god kommunikation var viktigt för att de anhöriga skulle våga prata om sina egna behov, tankar och åsikter. Slutsats: Det viktigaste för de anhöriga var att kommunikationen, stödet och informationen fungerade mellan alla parter. Fungerade dessa delar så byggdes en god relation mellan parterna och man fick en god tillit till vården. Samarbetet blev bättre och de anhöriga kände sig som en i teamet. / Background: Thanks to more advanced home care, palliative care has developed into making it possible for more people to die in their own homes. Palliative care is not just about the patient, but also it also involves the families. The overall objective of palliative care is the patient and the relative experience good quality of life to the end of life. The family's presence is significant, not only for the patients but also for the caregivers. The families are in a very stressful situation and it is important that caregivers have the knowledge of what the families are experiencing and how to support the families in their situation. Aim: To highlight the relatives' experiences of participation in the context of palliative care at home. Method: A literature review based on 11 scientific articles by a qualitative approach. Result: Two categories emerged from the study. Participation gives the families the perception of getting everyday-living work and Relatives participation contributes to person-centered care.It was a drastic change in the families lives. It was not just the home as such that changed with all the technical equipment and aids the patient needed. Existential issues appear when you live close to death and it was important to the families that their need of being seen and heard, received attention by the caregivers. Good communication was important for the relatives, in order to dare to talk about their needs, thoughts and opinions. Conclusion: The most important thing for the families was that the communication, support and information worked out well between all parties. When these parts worked well, it built a good relationship between the parties and led to good trust in health care. The collaboration became better and the relatives felt as a part of the team.

Bakgrund: Närstående inom palliativ vård har ofta en vårdande roll samtidigt som de själva är i behov av stöd då deras livssituation ofta är mentalt och emotionellt påfrestande. För att kunna ge ett adekvat stöd behöver vårdpersonal kunskap om hur närstående inom den palliativa vården upplever sin livssituation. Syfte: Syftet var att undersöka hur närstående inom den svenska palliativa vården upplever sin livssituation. Metod: De elva vetenskapliga originalartiklar till denna litteraturöversikt identifierades via sökningar i databaserna CINAHL Complete och PubMed. Vedertagna riktlinjer användes för granskning av resultatstudierna och data analyserades genom att jämföra likheter och skillnader samt vidare identifiera teman i materialet. Resultat: I resultatet framkom sex teman; Att få information och att vara delaktig, Att bli sedd och bekräftad, Att få en paus, Att inte behöva upprätthålla en fasad, Att uppleva ensamhet samt Att uppleva olika former av förlust. Genomgående i de teman som framkom var att relationen med vårdpersonalen påverkade de närståendes upplevelse kring sin livssituation. Diskussion: I diskussionen togs de centrala fynden i resultatet upp och relateras till Watsons teori om mänsklig omsorg samt konsensusbegreppet hälsa för att få en djupare förståelse för hur de närståendes livssituation inom den palliativa vården kan påverkas. Relationen mellan de närståendes livssituation och deras hälsa behöver ses ur ett holistiskt perspektiv och genom en vårdande relation kan vårdpersonal stödja närstående i deras livssituation och främja närståendes hälsa. / Background: Relatives´ within palliative care often end up with a caring role, and are at the same time in need of support themselves due to their own life situation being both mentally and emotionally demanding. In order to give adequate support, health care professionals need knowledge about how the relatives´ within the palliative care experience their life situation. Aim: The aim was to examine how the relatives´ within palliative care in Sweden experience their life situation. Method: The eleven original articles in this literature review was identified by searching the databases of CINAHL Complete and Pubmed. Accepted guidelines were made for review and data was analyzed by comparing similarities and differences and further identifying themes in the material. Results: The result revealed six themes; To get information and to participate , To be seen and to get acknowledged, To get a break, To not have to keep up appearance, To experience loneliness and To experience different types of loss. Throughout all the themes showed that the relation between the health care professional and the relatives´ affected how the relatives experienced their life situation. Discussion: In the discussion the central findings of the result was brought up and related to Watsons theory of human caring and the concept of consensus health to get a deeper understanding of how the relatives´ life situation within palliave care can be influenced. The association between the relatives´ life situation and their health needs to be seen from a holistic perspective and a through a caring relationship can health care professionals support the relatives´ life situation and promote the relatives´ health.