Retrospektive Analyse von 181 Patienten, die im Zeitraum vom 01.02.2015 bis zum 31.03.2016 auf der Palliativstation des Universitätsklinikums Würzburg verstorben sind. Es wurde die palliative Sedierungstherapie untersucht unter folgenden Gesichtspunkten: Erfolgte sie leitliniengerecht (waren die Symptome therapierefraktär bzw. wurde eine proportionale Sedierung durchgeführt)? Wie lässt sich die palliative Sedierungstherapie von aktiver Sterbehilfe abgrenzen? Welchen Einfluss hat das Delir? Welche Qualität hatte die Dokumentation? Die Autorin kommt zu dem Schluss, dass die palliative Sedierungstherapie ein wichtiges Instrument ist zur Symptomlinderung am Lebensende. Es ist auch eine sichere Therapiemaßnahme, solange sie leitliniengerecht durchgeführt wird. Die palliative Sedierungstherapie auf der Palliativstation der Universitätsklinik Würzburg konnte als leitliniengerecht bestätigt werden. Das Delir war mit einer signifikant längeren Sedierungsdauer verbunden und Patienten mit Delir wiesen signifikant mehr Risikofaktoren für Delir auf. Der Erhebung von Risikofaktoren und der frühzeitigen Erkennung des Delirs kommen damit eine besondere Bedeutung zu. Eine korrekte Dokumentation ist aus rechtlichen Gesichtspunkten und aus Respekt vor dem Selbstbestimmungsrecht des Patienten sehr wichtig, hier gab es Verbesserungspotential. Eine Empfehlung zur strukturierten Durchführung der palliativen Sedierungstherapie wurde von der Autorin entwickelt. / Retrospective analysis of 181 patients who died at the palliative care unit of the university clinic of Wuerzburg, between February 1, 2015 and March 31, 2016. The palliative sedation therapy was analyzed regarding the following questions: Was it performed in accordance with accepted guidelines (were the symptoms refractory, was the sedation proportionate)? How can palliative sedation be distinguished from euthanasia? What impact does delirium have? What quality did the documentation have? The author concludes that palliative sedation is an important tool to alleviate symptoms at the end of life. It is also a secure therapy option when it is performed in accordance with the guidelines. On the palliative care unit at the university clinic of Wuerzburg, palliative sedation was administered according to the guidelines. Delirium was linked to significantly longer sedation times, and patients with delirium had significantly more risk factors for delirium. The early detection of risk factors and delirium are therefore crucial. The correct documentation is very important due to legal aspects and out of respect for the patients’ right to self-determination. In this regard, the study showed there was room for improvement. The author developed a proposal for a structured procedure for administering palliative sedation therapy.

No

Buried deep inside the debates on how we should die - with or without palliative care or euthanasia -and where we should die - in hospitals, nursing homes, hospices or in our own homes—lie two strange and persistent facts. Few people understand the dominant ways we die and the challenges most people face because of those types of dying. Many of the social science monographs and health policy debates focus on cancer dying or dying in total institutions. Yet cancer is only one disease that kills, and many people live out their dying with several fatal illnesses. Though many people become dead in total institutions, the longer part of living-while-dying is outside of custodial care. Between a popular media fed with mere clinical insights about dying and a social science tradition of investigations that have taken almost their every lead from health care institutions, major myths and biases do grow. And basic insights from history, cultural sociology and epidemiology continue to be overlooked. This chapter seeks to redress these oversights by describing the key social trends, and the personal challenges thrown up by them, for today’s dying populations. Any basic sociology of dying needs to grapple with these trends because they are the meeting places between recent history and identity for today’s dying person. I describe seven major social trends that are key determinants of the cur- rent social experience of dying. These are: (1) the complicated nature of dying trajectories; (2) the seduction of medical rescue as a broad cultural value; (3) the myth of institutionalization; (4) the social manufacture of horror for con- temporary images of dying; (5) the rise of single-person households; (6) the paradoxical trend towards promoting dying for resource-poor countries while promoting sudden death in resource-wealthy ones; (7) and the current inability to address the problem of destination for a fundamental life-course rite of passage such as death and dying.

Yes / We linked UK cancer registry data with the corresponding electronic primary care medical records of 6080 patients who died of cancer over a 7-year period in a large United Kingdom city. We extracted all prescriptions for analgesics issued to each patient in the linked cohort during the 12 months before death and analysed the extent and duration of strong opioid treatment with clinical and patient characteristics. Strong opioids were prescribed for 48% of patients in the last year of life. Median interval between first prescription of a strong opioid and death was 9 weeks (interquartile range 3-23). Strong opioid prescribing was not influenced by cancer type, duration of illness, or gender but was adversely influenced by older age. Compared with patients who died in a hospice, those who died in a hospital were 60% less likely to receive a strong opioid in primary care before admission (relative risk ratio 0.4, CI 0.3-0.5, P < 0.01). The study provides the first detailed analysis of the relatively late onset and short duration of strong opioid treatment in patients with cancer before death in a representative UK cohort. This pattern of prescribing does not match epidemiological data which point to earlier onset of pain. Although persistent undertreatment of cancer pain is well documented, this study suggests that strategies for earlier pain assessment and initiation of strong opioid treatment in community-based patients with cancer could help to improve pain outcomes. / National Institute for Health Research (NIHR) (RP-PG-0610-10114)

The purpose of this practice inquiry project is to create a model for implementing an outpatient palliative care clinic within an organization of healthcare providers who participate in shared savings for Medicare patients, also known as, an accountable care organization (ACO). The goal of this project is that it can be used by future health care administrators to successfully create and implement an outpatient palliative care clinic. The philosophical nursing foundation for palliative care is discussed to set the groundwork for the model proposed. The benefits of palliative care nursing for patients, families and the ACO are discussed to support the importance of opening an outpatient palliative care clinic. A step by step model has been developed and presented on how to plan and implement an outpatient palliative care program. Tools have been proposed to help successfully and effectively create, implement and evaluate outpatient palliative care clinics within an ACO.

Darbo tikslas – ištirti psichosocialinių paslaugų organizavimą slaugos ligoninėje paliatyvių ligonių artimiesiems. Darbo uždaviniai: 1. Ištirti paliatyvių ligonių artimųjų esamų psichosocialinių paslaugų poreikį. 2. Įvertinti psichosocialinių paslaugų poreikio tenkinimą. 3. Išsiaiškinti naujų psichosocialinių paslaugų poreikį. Tyrimo metodika: Tyrimo objektas – psichosocialinių paslaugų organizavimas slaugos ligoninėje paliatyvių ligonių artimiesiems. Tyrimo metodas – anoniminė paliatyvių ligonių artimųjų (n=67) anketinė apklausa. Duomenų analizė atlikta naudojant statistinės duomenų analizės SPSS 13.0 for Windows versiją ir Microsoft Exel programą. Rezultatai. Didžiajai daliai tiriamųjų sąveikos su sveikatos priežiūros darbuotojais (88,4 proc.), ligoniui teikiamos priežiūros ir procedūrų kokybės (89,1 proc.), informacijos ir pagalbos (81,2 proc.) bei psichologinės paramos (68,0 proc.) poreikiai yra svarbūs. Lyčių ir slaugymo patirtį turinčių/neturinčių tiriamųjų poreikių svarba skyrėsi: sąveikos su sveikatos priežiūros darbuotojais ir psichologinės paramos poreikis svarbesnis moterims ir artimąjį slaugiusiems asmenims, o ligoniui teikiamos priežiūros ir procedūrų bei informacijos ir pagalbos poreikis svarbesnis moterims ir artimojo neslaugiusiesiems. Tiriamųjų poreikiai patenkinami nevienodai. Sąveikos su sveikatos priežiūros darbuotojais poreikis patenkinamas (49,7 proc.), tačiau labiau užtikrinamas moterims ir slaugymo patirtį turintiesiems. Priežiūros ir procedūrų... [toliau žr. visą tekstą] / Aim of the study - to analyse the management of psychosocial services for the relatives of palliative care patients at nursing hospital. Objectives: 1. To determine the demand for existing psychosocial services for the relatives of palliative care patients. 2. To evaluate supply of this demand. 3. To establish the demand for new psychosocial services. Material and methods. The study object – management of psychosocial services for the relatives of palliative care patients at nursing hospital. The survey implied the anonymous questionnaire (n=67) for the relatives of palliative care patients. Statistical data analysis was performed using statistical package „ SPSS 13.0 for Windows“ and „Microsoft Excel“ software. Results. The majority of responders pointed out, that the needs to interact with health care staff (88.4%), to receive high quality of health care and procedures (89.1%), information and aid (81.2%), and psychological support (68.0%) all are relevant. The analysis of demands' perception regarding to gender and prior experience of care (experienced subjects and non-experienced subjects) demonstrated following differences: relevance of interaction with health care staff and of psychological support was higher for women and experienced subjects, while the quality of care and procedures as well as information and aid were more relevant for women and non-experienced subjects. The coverage of demands was different. The needs of interaction with health care staff was... [to full text]

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.

The study sought to research and develops a universal palliative care measurement tool that will track the performance of informal caregivers to dying persons across the diversity of the South African cultural and religious groupings. The major inferences drawn from this study was that a generic domain, sub-items and intervals could be identified for palliative care; that a reliable measurement tool could be developed and that outcomes of care programs for dying persons in terms of effectiveness and efficiency could be numerically quantified. With the ability to measure now been realised, the ability to manage the outcomes became the new challenge. / Nursing Sciences / M.A. (Health Studies)

The study sought to research and develops a universal palliative care measurement tool that will track the performance of informal caregivers to dying persons across the diversity of the South African cultural and religious groupings. The major inferences drawn from this study was that a generic domain, sub-items and intervals could be identified for palliative care; that a reliable measurement tool could be developed and that outcomes of care programs for dying persons in terms of effectiveness and efficiency could be numerically quantified. With the ability to measure now been realised, the ability to manage the outcomes became the new challenge. / Nursing Sciences / M.A. (Health Studies)

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