This master thesis covers the palliative care in a hospice and a hospital. A lot of seriously ill patients suffering from incurable diagnoses die in hospitals. Therefore the nursing staff come into a close contact with patients near the end of their life.The nurses are in a close contact with the patients. The nurses sense emotions and suffering of dying patients. They sense also feelings of patients in case when improper cure and treatment are applied. Taking care of dying patients is stressing situation. The care covers not only the patient himself but it also includes the communication with the patients´ family and later the bereaved families.The hospital environment is primarily targeted to acute care. The palliative care is at the periphery. In The Czech Republic the palliative care is emerging in hospices mainly. That is the reason why the hospices may serve as a source of inspiration for improvements of the palliative care in other medical institutions.The first part of the theory section describes the main principles of a palliative care. The next part deals with mutual relations between the dying patient, the disease, between the nurse and the family and relatives of the dying patient. The last part deals with the ethical problems in the dying patients nursing, describes the environment where the palliative care is provided and researches the palliative care standards. There are three main goals of the work. The first goal is to compare the level of palliative care standards in different types of medical institutions. The second goal is to evaluate the possibility of providing of the palliative care in the different types of the medical institutions. The third goal is to suggest possibility of the hospital palliative care improvements according to results of the surveys.In the research part an analysis of written documents was performed. The quantitaive part of the research used an anonymous survey. We created two surveys to perform the research. The first survey was targeted to the nursing management and their view of the palliative care provided in the different types of medical institutions.The survey was distributed to 238 relevant medical institutions by electronic means. It consists 6 questions. 3 of them were closed questions, remaining 3 were semiclosed. The survey was opened by 78 respondents of different institutions. 26 respondents took part and finished the survey. According to answers of 26 nursing managers 18 of them agreed to cooperate further and participate in more detailed survey targeted on the nurses who work directly with patients and provide the palliative care. The second survey consisted of 26 questions and 13 of them were closed and 13 semiclosed. The survey was finished by 150 respondents from different medical institutions: hospitals, long term care hospitals and hospices. The data of the both surveys were statistically evaluated.We established 4 hypothesis. H1: The presence of palliative standard depends on the type of medical institution. The hypothesis is valid. H2: The palliative care standards are focused mainly on the basic physical needs providing and less to the spiritual and psycho-social needs providing. The hypothesis was not sufficiently proven. H3: The possibility to provide palliative care by nursing staff depends on the type of medical institution. The hypothesis is valid. H4: From the point of view of nursing staff the palliative care providing depends on the environmental conditions. The answers of the nursing staff take us to the conclusion that the environment influences providing the palliative care. The results of the research shows, that the palliative standards in the medical institutions exist. The standards are focused mainly on providing basic physical needs. There is an evidence that the quality palliative care can be provided in case when the conditions are adequate.

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

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.

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.

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Darbo tikslas: Įvertinti paliatyvios pagalbos paslaugų poreikį besigydantiems Kauno miestą aptarnaujančiose slaugos ir palaikomojo gydymo ligoninėse . Tyrimo metodika: Išanalizuota trijų Kauno miesto slaugos ligoninių 2008 metais visos gydytojų užpildytos išvykusio iš stacionaro asmens statistinės kortelės formos Nr.066/a-LK (n=1689). Gauti rezultatai pagal TLK-10 ligos kodą ir gydymo profilį palyginti su Lietuvos Respublikos sveikatos apsaugos ministerijos įsakymu nustatytomis paliatyvios pagalbos teikimo indikacijomis. 2009 metų vasario-kovo mėnesiais atlikta šių trijų slaugos ligoninių pacientų artimųjų anoniminė anketinė apklausa. Atsako dažnis 70,2%(n=151). Abiejuose tyrimo dalyse į atskirą grupę išskirti demenciški ligoniai. Duomenys išanalizuoti naudojant 13 versijos SPSS programinį paketą. Rezultatai: Į slaugos ligonines guldytiems su išemine širdies liga paliatyvi pagalba reikalinga 14,6% pacientų, sergantiems piktybiniais navikais - 10% pacientų, pagal spinalinė raumenų atrofija ir su ja susiję sindromai - 0,1% pacientų, demielinizuojančios centrinės nervų sistemos ligos – 0,6% pacientų, anoksinis smegenų pažeidimas, koma - 0,2% pacientų, lėtinis kepenų funkcijos nepakankamumas-0,8%, lėtinio inkstų funkcijos nepakankamumo terminalinė stadija - 0,2% slaugomųjų reikėjo paliatyvios pagalbos. Iš anketinės apklausos valstybės skirto 120 dienų slaugai termino neužteko 70,2%.Speciali medicininė priežiūra ir slauga reikalinga 83% slaugomųjų. Artimojo susirgimas sparčiai... [toliau žr. visą tekstą] / Aim of the study: to evaluate the demand for palliative care services among patients at nursing and supportive care hospitals, that serve Kaunas city. Methods. The study started with patients' data from year 2008, personal statistical card form No. 066/a-LK (n = 1689), which were fulfilled by physicians at patients' discharge and obtained from 3 nursing hospitals in Kaunas. The findings as coded according to ICD-10 and therapeutical profile were compared with indications defined in national legislation for palliative care. During February–March 2009 the anonymous survey including the relatives of the patients was conducted in the hospitals using questionnaires. Sample size was 151, response rate 70.2%. Dementia patients were analyzed separately. Statistical data analysis was performed using software „SPSS for Windows 13.0“. Results. In nursing hospitals the palliative care was needed by 14.6% of patients with ischemic heart disease, 10.0% – with malignant tumours, 0.1% – with G12 (spinal muscular atrophy and related syndromes), 0.6% – with G35–G37 (demyelinating diseases of the central nervous system), 0.2% – with G93 (anoxic brain damage), 0.8% – with K70–71 (chronic liver insufficience), 0.2% – with N19 (unspecified renal failure). The questionnaire revealed, that nursing term of 120 days as defined by state was insufficient for 70.2% of cases. Special medical care and nursing was necessary for 83.0% of patients. 56% of relatives stated that the disease is progressing and... [to full text]