Le cancer est considéré comme l’une des principales causes de morbidité et de mortalité et, en Espagne, représente à lui seul 25% du taux de mortalité globale. Lorsqu’une personne et sa famille font l’expérience de traverser la phase avancée du cancer, celles-ci vivent un grand choc émotionnel où les souffrances physique, psychique et spirituelle peuvent être présentes. L’information donnée par les professionnels de la santé aux membres de la famille, incluant la personne atteinte, en ce qui concerne le diagnostic et le pronostic du cancer est maintenant plus fréquente dans le contexte méditerranéen. Il n'est pas clair, toutefois, comment cette nouvelle approche est vécue par les familles. C’est pourquoi, le but de cette recherche qualitative de type phénoménologique est d’explorer la signification de l’expérience de familles dont l’un des membres est atteint d’un cancer terminal, alors que tous connaissent le pronostic de la maladie. Les résultats obtenus reposent sur l’analyse en profondeur d’entrevues réalisées auprès de quatre couples. L’analyse des données, à l’aide de la méthode phénoménologique de Giorgi (1997), fait émerger deux thèmes centraux caractérisant la signification de cette expérience de la phase palliative de cancer, alors que l’information sur le mauvais pronostic est connue tant par la personne atteinte que sa famille. Le premier thème central est celui de vivre intensément la perte de la vie rêvée et comporte le vécu suite au choc du pronostic fatal, le fait de vivre constamment des sentiments et des émotions liés à différentes pertes telles que la tristesse, la frustration, l’inquiétude et l’incertitude, et l’espoir de ne pas souffrir. Le deuxième thème central qui ressort est le développement de stratégies par les couples participants afin de rendre leur vie plus supportable. Ces stratégies sont les suivantes : accueillir l’information et le soutien professionnel, retrouver une certaine normalité dans la vie quotidienne, profiter de la vie, recevoir l’aide de la famille et des amis, maintenir une communication cognitive et instrumentale ouverte, se protéger au niveau émotionnel et envisager l’avenir sans la personne aimée. Tous ces éléments, dans le contexte individuel de vie de chaque famille transforment chacun de ces vécus en une expérience unique qui doit être comprise et respectée comme telle par tous les professionnels de la santé impliqués. Les connaissances développées par cette recherche permettront aux infirmières de mieux comprendre l’expérience de la phase palliative du cancer pour des couples dont le diagnostic et le pronostic fatal sont connus par tous, ceci afin d’améliorer leur qualité des soins. Afin de poursuivre le développement du savoir infirmier, il est recommandé de poursuivre des études afin d’explorer plus en profondeur la communication au sein des couples. / Nowadays cancer constitutes one of the most prevalent morbilty and mortality causes, representing 25% of the total mortality rate in the Spanish context. When patients and their families live through the palliative phase of cancer, they experience a great emotional shock where physical, psychological and spiritual suffering may come at play. Having health professionals inform all family members including the patient about cancer diagnosis and related prognosis is a more and more common situation encountered within Mediterranean contexts. Nevertheless, it is not yet clear how this new approach to information disclosure is experienced by family members. Thus, the goal of this phenomenological research study was to explore and further understand the meaning these families assign to the experience of living through the terminal phase of cancer of a loved one, while being all informed about the related prognosis. The findings of this study rely on in-depth interviews with four couples (patient and spouse). The data analysis, developed upon the guidance provided by Giorgi’s (1997) phenomenological method, presents two central themes that characterize the meaning of the experience of the palliative phase of cancer, when information on the poor prognosis is known both by the patient and his/her family. The first theme concerns the fact of intensively living the loss of a dreamed-of life. This first theme is mainly develop around the lived experience regarding the shock associated with the fatal prognosis, the constant feelings and emotions such as sadness, frustration, worry and uncertainty, and related to different losses, as well as the hope for an absence of suffering. The second main theme is related to the strategies developed by these couples as they face the situation and try to make their lives as manageable as possible: to gather health professionals’ information and support, to search for a certain “normality” in their everyday life, to enjoy life, to get help from relatives and friends, to keep an open cognitive and instrumental communication dynamics, to emotionally protect themselves and to imagine and construct a future time where the loved one will no longer be present. All these elements of each family’s individual contexts transform their lived experiences into unique experiences that must be understood and respected as such by all health professionals involved. Knowledge developed by this research study will allow nurses to better understand the experience of the palliative phase of cancer for couples sharing the information on diagnosis and prognosis, aiming at improving their quality of care. Several suggestions, related the development of sounder nursing knowledge, evolve from these results in regards to the need to develop later studies that would further explore communication in the context of couple dynamics.

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: Home health is the fastest-growing healthcare setting in the country. Through Home Health Value-Based Purchasing (HHVBP), the Center for Medicare and Medicaid Services (CMS) provides incentives or penalties to HHAs based on outcomes. Hospitalization and emergency department use are weighted heaviest as poor outcomes. HHVBP requires HHAs to report on whether they are engaging in advance care planning (ACP) conversations. For this study, ACP was defined as a conversation held in advance of a medical crisis with a loved one and/or a health care provider about goals; values; preferences for future medical treatments; and choice of a surrogate decision-maker. Purpose: to determine whether the proportion of Black patients was correlated with robustness of HHAs’ ACP protocols and levels of acute care services use. Methods: A cross-sectional, quasi-interventional design was used. The sample size was n = 89. Electronic surveys about ACP protocols were distributed to HHAs. Existing data about demographics and acute care services use were accessed via CMS websites. Spearman’s correlation coefficient was used. Results: No relationship was found between robustness of ACP protocols and the proportion of Black population per agency. No relationship was found between overall acute care services use rates proportion of Black patients. However, a trend was found: The greater proportion of Black patients, the greater the tendency for an agency to have a higher hospitalization rate. Discussion: Results are compared to current literature and to a CMS-commissioned study’s discussion about the potential for value-based purchasing programs to exacerbate health disparities in vulnerable populations.

Background: The elderly population is increasing and many of these will need palliative care in their end of life. Many of these have a wish to spend their last time in life in their own home. This leads to high demand on healthcare, and it requires a good competence by nurses in municipal home health care to be able to provide good palliative home care. Aim: The aim of this study was to illuminate nurses´ experiences of caring for the palliative patient in their own home. Method: A literature-based study in which qualitive articles were analyzed. Systematic searches were performed in the databases Cinahl and PubMed. Articles about nurses´ experiences of caring for the palliative patient were included. The study was based on 10 articles. Results: The results showed that the nurses experience that communication and collaboration with the doctor is crucial to provide good palliative care. An early established relationship with the patient and his/hers relatives is strived for in order to be able to provide the care that the patient wishes for and desires. Nurses in palliative home care need adequate knowledge and competence to help the patient, not only with the physical suffering but also with existential and mental suffering. Conclusion: Nurses in palliative home care needs more education and support to be able to fully care for the palliative patient. Nurses also need to maintain a good collaboration with all people that are involved in the patient’s care, both professionals and relatives.

Palliativ vård syftar till att främja livskvalitet för personer med livshotande sjukdom och deras närstående. Patientens fysiska, psykosociala och andliga problem ska lindras. Dessutom ska närstående stöttas genom sjukdomstiden och det sorgearbete som följer. Den palliativa vården vilar på de fyra hörnstenarna symtomlindring, kommunikation, teamarbete och närstående. Närstående har en naturlig roll inom den palliativa vården och deras behov ska uppmärksammas. EAPC’s definition av palliativ sedering beskriver en kontrollerad sänkning av medvetandet för att lindra svårbehandlade symtom. Sjuksköterskans ansvarsområde vid palliativ sedering innebär bland annat att värna patientens välbefinnande men även att informera och stötta närstående under döendeprocessen. Kunskap om hur närståendes erfarenheter vid palliativ sedering behövs för att deras behov ska kunna synliggöras och tillmötesgås.       Syftet med denna studie var att belysa närståendes erfarenheter av palliativ sedering inom palliativ vård. Metoden som valdes var systematisk litteraturstudie. Inklusionskriterierna var att artiklarna skulle vara peer reviewed, skrivna på engelska och inte äldre än 15 år Litteratursökningar i databaserna PubMed, CINAHL, PsychINFO och MEDLINE resulterade i 12 inkluderade artiklar, samtliga etiskt godkända och kvalitetsgranskade. Data analyserades sedan med innehållsanalys.   Resultatet består av de fyra kategorierna symtomlindring, kommunikation, teamarbete och närstående. Närstående upplevde själva lindring då patientens lidande lindrades. De plågades av det faktum att de inte längre kunde kommunicera med patienten efter att sedering påbörjats. Även om de samtyckt till den palliativa sederingen funderade de i efterhand på vem den gynnat. Den emotionella påverkan hos närstående var stor och de upplevde mycket oro.   Slutsatsen av denna studie är att de flesta närstående är nöjda med den palliativa sederingen men situationen är mycket påfrestande för dem. De tar svåra beslut och upplever mycket oro och lidande. Kommunikation med och stöd från vårdpersonal är därför viktigt. Sårbara närstående bör identifieras och erbjudas ytterligare stöd. / Palliative care aims to improve the quality of life for people with terminal diseases and their relatives. Physical, psychosocial and spiritual problems of the patient shall be prevented and relieved. Additionally, relatives should be supported throughout the illness and the mourning that follows. Palliative care rests upon the four cornerstones symptom relief, communication, team work and relatives. Relatives have a natural role within palliative care and their needs should be payed attention to. EAPC’s definition of palliative sedation describes a controlled decrease of consciousness to relieve intractable symptoms. The nurses responsibility during palliative sedation includes protecting the patients well-being, as well as informing and supporting relatives during the dying process. Knowledge about relatives’ experiences during palliativ sedation is required in order for their needs to be made visible and accomodated.    The aim of this study was to illuminate the relatives’ experiences of palliative sedation within palliative care.    The systematic review method that was utilized in this study. The inclusion criterion was that the articles were to be peer reviewed, written in English and not more than 15 years old. The serches for articles were conducted in the databases PubMed, CINAHL, PsychINFO and MEDLINE. It resulted in 12 included studies, all of which had an ethical approval and were quality controlled. Data was then analyzed with content analysis.   The result consists of the four categories symptom relief, communication, team work and relatives. Relatives experienced relief when the patiens suffering was alleviated. They suffered because they could no longer communicate with the patient after sedation had started. Even though they had given their consent to the palliative sedation, afterward they thought about who it had favoured. The emotional impact on the relatives was great and they experienced a lot of anxiety.   In conclusion, most relatives are pleased with the palliative sedation but the situation is very distressing for them. They make difficult decisions and experience a lot of anxiety and suffering. The communication with and support from health professionals is therefor vital. Vulnerable relatives should be identified and offered additional support.

Skilled home health care (HH) is the largest and fastest growing long-term care setting in the United States. Patients in HH are served by an interprofessional team, and may have little direct contact with physicians, when discussing their progress, prognosis, and goals of care. Such conversations are part of primary palliative care communication. Evidence on primary palliative care communication training in the non-physician HH interprofessional team is lacking. The objectives of this study were to assess the feasibility, acceptability, and preliminary effectiveness of using a palliative care communication model known as COMFORT© to provide palliative care communication training to HH staff. A randomized controlled trial was conducted at a regional health system in the southeastern U.S. to test online training modules (n = 10) (Group 1) and online training modules plus face-to-face training (n = 8) (Group 2). Measures included training completion rates, staff acceptability ratings, comfort with palliative and end-of-life communication (C-COPE) and moral distress (MMD-HP). Results showed that COMFORT© training was feasible (92%), highly acceptable (>4 on a 6-point scale), and positively correlated with improved C-COPE scores (P = .037). There was no significant difference in moral distress scores pre- and post-intervention or in effectiveness between the groups. However, acceptability of COMFORT© was positively correlated with history of leaving or considering leaving a job due to moral distress ( χ 2 = 7.6, P = .02). Preliminary findings from this pilot study suggest that administration of COMFORT© training was feasible, and it was correlated with increased HH staff comfort with palliative care communication.

Bei der vorliegenden Bachelorarbeit handelt es sich um eine Betrachtung rechtlicher Rahmenbedingungen und gesunheitspolitischer Faktoren in Bezug auf den Einsatz und die Notwendigkeit Sozialer Arbeit in der ambulanten palliativen Versorgung, mit Schwerpunkt der Spezialisierten Ambulanten Palliativversorgung im fünften Sozialgesetzbuch. Mittels systemischer Literaturrecherche werden rechtliche, strukturelle und gesellschaftliche Gründe untersucht, die für oder gegen das Vorkommen von Sozialarbeiter*innen in der ambulanten Palliativversorgung für Erwachsene vorliegen. Desweiteren werden rechtliche Möglichkeiten für den Einsatz dieser Profession im Rahmen des Sozialgesetzbuch V aufgezeigt. Bei den Untersuchungen handelt es sich ausschließlich um eine theoretische Analyse. Diese Bachelorarbeit ist eine sehr komplexe wissenschaftliche Arbeit, die sowohl gesundheitspolitische, professionstheoretische, aber auch leistungsrechtliche sowie leistungserbringungsrechtliche Punkte berührt. In acht Kapiteln werden einschlägige Begriffe erläutert, die Entstehung der Palliative Care und die Entwicklung des Sterbens in der Moderne aufgezeigt. Die rechtlichen Rahmenbedingungen der ambulanten Palliativversorgung werden betrachtet sowie die komplexe Organisations- und Versorgungskultur der Selbstverwaltung in der gesetzlichen Krankenversicherung. Schließlich gibt es einen Ein- und Ausblick in die Potentiale der Sozialen Arbeit im Kontext End-of-Life-Care und Netzwerkkordination.:Abkürzungsverzeichnis Abbildungsverzeichnis 1 Einleitung 2 Begrifflichkeiten 2.1 Gesundheit 2.2 Palliative Care 2.3 Gesundheitspolitik 3 Entstehung und Bedeutung der Palliative Care 3.1 Entwicklungen des Sterbens in der Moderne 3.2 Anfänge der palliativen Versorgung 3.3 Total Pain und die vier Säulen der palliativen Arbeit 3.4 Versorgungsangebote in Deutschland 4 Palliative Care in der ambulanten Versorgung 4.1 Rechtliche Grundlagen 4.2 Allgemeine ambulante Palliativversorgung 4.3 Spezialisierte ambulante Palliativversorgung 4.3.1 Der Gemeinsame Bundesausschusses und die Richtlinie 4.3.2 Der Spitzenverband der gesetzlichen Krankenkassen 4.3.3 Organisationsstruktur und Versorgungskultur 5 Soziale Arbeit in der ambulanten Palliativversorgung 5.1 Kernziele und Arbeitsauftrag 5.2 Aufgaben in der palliativen Versorgung 5.3 Psychosoziale Probleme 6 Kritische Auseinandersetzung 6.1 Resümee der SAPV-Rechtsgrundlagen 6.1.1 Empfehlungen der Fachverbände 6.1.2 Tragende Gründe 7 Ausblick und Potential der Sozialen Arbeit 7.1 Soziale Arbeit im Kontext End-of-Life Care 7.2 Netzwerkkoordination 8 Fazit Literaturverzeichnis Anhang

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.