<p>The project explores decision making in the context of end-of-life (EOL) care choices among adults with few social and economic resources. Although most American adults believe that planning for EOL is important, only about 30% report making formal EOL plans such as Advance Directives, wills, trusts, or any other formal documentation. Using qualitative methodology, 25, participants who were all living at the same long term care facility, were interviewed during two different waves of data collection. The transcribed interviews were analyzed using thematic analysis and guided by Normative Rhetorical Theory framework. Remarkable conclusions were that without social and economic resources, participants reported they did not make choices about EOL and care, but rather their decisions were made by default.</p>

Background: Death is a common occurrence in the Intensive Care Unit (ICU), and the circumstances surrounding a patient’s death can have a lasting influence on the wellbeing of families and nursing staff alike. Culture is an important influence on an individual’s perspective of end-of-life (EOL) care and a ‘good death’, and, as such, cultural sensitivity is an essential element of high quality EOL care in the ICU. Nurses are well situated to facilitate culturally sensitive EOL care within the ICU; however, there is a significant paucity of knowledge regarding ICU nurses’ perceptions of a culturally sensitive EOL nursing practice and their experiences delivering this within an adult ICU. Aims: The purpose of this study was to explore ICU nurses’ perceptions of delivering culturally sensitive care within their current EOL practice, and thus better understand how culturally sensitive EOL care can be supported within adult ICUs. Design and Methods: An Interpretive Description methodology was utilized to explore the perceptions of seven (n=7) Canadian ICU nurses regarding culturally sensitive EOL care. Maximum variation and theoretical sampling were used to recruit registered nurses from ICUs in two hospitals in Southern Ontario, Canada. Data were generated using semi-structured interviews and field notes and was concurrently analyzed using a constant comparative and reflexive approach. Study rigour was supported through the use of reflexive journaling/memoing, data triangulation, and peer debriefing. Results: Analysis of the data led to the construction of three themes which described nurses’ perceptions of providing EOL care within the ICU: 1) culturally sensitive EOL care is truly person-centered care, 2) dissonance between culturally sensitive EOL care and the biomedical model of care in the ICU, and 3) needing support to adopt a more relational approach to care in the ICU. Conclusion and Implications: Study findings highlight that ICU nurses perceive that culturally sensitive EOL care primarily involves building a strong therapeutic relationship and being truly person-centered when delivering care. However, the context surrounding nursing practice in the ICU creates many barriers to adopting this relational approach to care; thus, multifaceted support is needed for culturally sensitive EOL nursing practice to be bolstered and sustained. / Thesis / Master of Science in Nursing (MSN) / Patients in the Intensive Care Unit frequently die and the circumstances surrounding these deaths affects both family members’ and nurses’ wellbeing. Culture is an important influence on an individual’s needs during the end-of-life period and on their views about a ‘good death’. As such, when caring for dying patients, healthcare professionals need to be sensitive to the culture of each patient and family. In the Intensive Care Unit, nurses play an important role in making sure end-of-life care is culturally sensitive. The goal of this study was to learn more about nurses’ perceptions and experiences of providing culturally sensitive end-of-life care within adult Intensive Care Units. This study found that nurses working in Intensive Care Units feel culturally sensitive end-of-life care mainly involves being truly person-centered and this requires staying open-minded and building strong relationships with patients and their families. Nurses in this study also indicated that they face many obstacles when trying to be culturally sensitivity during end-of-life care and some of these were created by their practice environment. This research shows that if nurses are to deliver culturally sensitive end-of-life care within critical care settings they need significant support in various forms, which likely includes a change in the unit culture.

Zusammenfassung: Laut Robert Koch-Institut wird in den kommenden Jahren die Anzahl der Menschen, die an Pankreaskarzinom erkranken werden, zunehmen. Dies hängt vor allem mit unseren Lebensbedingungen und dem zunehmendem Älterwerden der Gesellschaft zusammen. Die Diagnose und Therapie von Pankreastumoren stellt einen erheblichen Einschnitt in die Lebensqualität der Patienten dar, ver- bunden mit einer hohen Symptombelastung. Ziel vorliegender retrospektiver Studie war es, die Versorgung am Lebensende von Patienten mit fortgeschrittenem oder metastasiertem Pankreaskarzinom anhand von Qualitätsindikatoren nach Craig C. Earle zu überprüfen und daraus optimierte Entscheidungsalgorithmen zu generieren. Hierzu untersuchten wir die Daten von insgesamt 202 Patienten. Zur Beantwortung der Fragestellung diente ein dafür erstellter Dokumentationsbogen, mit dem die Daten erhoben wurden. Das Patientenkollektiv teilte sich auf in Patienten, die im Comprehensive Cancer Center (CCC) des Uniklinikums Würzburg in den Jahren von 2010 bis 2014 vorstellig wurden und Patienten, die am Klinikum Magdeburg in den Jahren 2005 bis 2014 behandelt wurden. Wir unterteilten das Patientengut zusätzlich in 132 primär metastasierte Primärfälle (UICC-Stadium IV) und in 53 Rezidivfälle (UICC-Stadium I-IV). Ebenso verglichen wir die Gruppen mit und ohne Kontakt zu Palliativangeboten. Das Patientenkollektiv setzte sich aus 74 Frauen und 126 Männern zusammen (bei zwei Fällen fehlte die Geschlechtsangabe) mit einem durchschnittlichen Alter von 68,8 Jahren zum Zeitpunkt der Diagnose. Der Allgemeinzustand wurde mit dem Karnofsky-Index erfasst und lag bei den meisten Patienten zum Diagnosezeitpunkt bei 90 oder 100. Die meisten Patienten befanden sich schon in einem fortgeschrittenen Zustand der Erkrankung, welches sich an der hohen Anzahl des UICC-Stadium IV erkennen lässt (n = 132). 42,1 % (n = 85) der Patienten hatten Kontakt zu Palliativangeboten. Der überwiegende Teil der Patienten hatte mehr als 3 Tage vor Tod Kontakt zu Palliativangeboten (77,7 %). Es war uns nicht möglich einen statistisch signifikanten Zusammenhang zwischen tumorspezifischer Therapie (Chemotherapie und / oder Bestrahlung) in den letzten 14 Lebenstagen und SPV-Kontakt < 3 Tagen herzustellen. Der Grund war die geringe Anzahl der Fälle. Es gab keinen Patient, der unter 3 Tagen Kontakt zu Palliativangeboten hatte und bestrahlt wurde. Lediglich ein Patient erhielt noch eine Chemotherapie. Bei Patienten, die keinen Kontakt zu Palliativangeboten hatten, erhielten immerhin sechs noch eine Chemotherapie und fünf eine Bestrahlung in den letzten 14 Lebenstagen. Die Hauptbeschwerden im Palliativkonsil, die von den Patienten aus Würzburg genannt wurden, bezogen sich hauptsächlich auf körperliche Beschwerden, wie z. B. Müdigkeit, Verschlechterung des Allgemeinzustandes, Schlafstörungen und Fieber. Gefolgt von Depressionen, Angst, Sorgen und Problemen mit der Nahrungsaufnahme, Appetitstörungen, Übelkeit sowie Erbrechen. Die häufigsten Probleme und Komplikationen in den letzten 6 Monaten bis 30 Tagen vor Tod waren bei den Würzburger Patienten mit Palliativkonsil das Auftreten eines Verschlußikterus`, Veränderung des Blutbildes oder Anämie, gefolgt von Ileus, Übelkeit oder Erbrechen und Peritonealkarzinose mit symptomatischem Aszites. In den letzten 30 Tagen vor Tod beliefen sich die häufigsten Komplikationen der Würzburger Patienten auf Nieren- und Leberversagen, urämisches Koma, metabolische Azidose, Blutungen, Ileus, Übelkeit oder Erbrechen und Peritonealkarzinose mit symptomatischem Aszites. Eine Patientenverfügung besaßen 54,4 % der Würzburger Patienten mit Palliativkonsil. Bei den Würzburger Patienten ohne Palliativkonsil waren es 50,0 %. Eine Vorsorgevollmacht oder das Vorliegen eines Notfallplans gab es nur in ganz wenigen Fällen. Ein großer Anteil der Patienten hatte einen Aufenthalt in der Notaufnahme in den letzten 6 Monaten vor Tod. Bei zwei und mehr Aufenthalten sank die Anzahl stark ab. Gleiches gilt für die Aufenthalte in der Notaufnahme oder auf der Intensivstation in den letzten 30 Lebenstagen. Bei der Datenerhebung wurde nicht differenziert, ob der Aufenthalt vor oder nach der 1. Kontaktaufnahme zustande. Es wurde nur die Tatsache festgehalten, dass ein Kontakt bestand. Dies bedeutet, dass nicht heraus zu lesen ist, inwieweit die Palliativmedizin in diese Entscheidung mit einbezogen wurde. Die geschätzte mediane Überlebenszeit des Würzburger Patientenkollektivs betrug 6,9 Monate. In den Jahren 2010 und 2011 zusammen genommen lag die mediane Überlebenszeit bei 6,2 Monaten. Nach Gründung des palliativmedizinischen Dienstes (PMD) an der Uniklinik Würzburg lag im Jahr 2012 und 2013 zusammen genommen die mediane Überlebenszeit bei 8,3 Monaten. Die Frauen überlebten die Männer um 2,7 Monate. Die Patienten mit Palliativkonsil überlebten die Patienten ohne Palliativkonsil um zwei Monate. Bereits nach 12 Monaten waren sowohl bei den Patienten mit und ohne Palliativkonsil in unserer Studie über die Hälfte verstorben. Nach 24 Monaten lebten vom Würzburger Patientenkollektiv nur noch fünf Patienten. Die Kriterien von Craig C. Earle sind nicht überall erreicht worden. Die Anzahl der Patienten mit Kontakt zu Palliativangeboten könnte höher sein (42,1 %). Die Anzahl der Patienten, die weniger als 3 Tage vor Tod Kontakt zu Palliativangeboten hatten, ist erfreulich niedrig (8,2 %). Die Anzahl der Fälle, in denen die Umstellung oder der Start einer neuen tumorspezifischen Therapie in den letzten 30 Lebenstagen stattfand, ist noch viel zu hoch (7,1 %). Hier wurden die Vorgaben von Craig C. Earle um ein vierfaches überstiegen bei den Patienten mit Kontakt zu Palliativangeboten. Bei der tumorspezifischen Therapie in den letzten 14 Lebenstagen lag die Anzahl der Patienten mit Kontakt zu Palliativangeboten auch wieder erfreulich niedrig (4,7 % für Chemotherapie; 1,2 % für Bestrahlung). Grundsätzlich lässt sich durch das kleine Patientenkollektiv keine endgültige Aussage in dieser Studie bezüglich der Effektivität der palliativen Versorgung treffen. In der vorliegenden Studie konnten zum Teil keine statistische Signifikanz nachgewiesen werden. In Zusammenschau aller Ergebnisse dieser Arbeit zeigt sich, dass die Therapie am Lebensende immer wieder neu evaluiert und an die sich verändernde Situation angepasst werden muss. Maßnahmen zur Linderung von erwarteten Symptome oder Komplikationen sollten im Vorfeld besprochen werden. Dies bedeu- tet, dass bei der Therapiewahl verschiedene klinische Parameter und jeder Patient individuell berücksichtigt werden sollte. Nach wie vor stellt sich die Herausforderung, die Lebensqualität der Tumorpatienten objektivierbar zu machen. Auch hier zeigt sich in der Literatur, dass das rechtzeitige Miteinbeziehen der Palliativmedizin viele Vorteile mit sich bringt. Es zeigt sich häufig eine kürzere Hospitalisationsrate, bessere Linderung der Symptome, eine Kosteneffizienz, eine Verlängerung der Überlebenszeit und eine verminderte Stressbelastung auch bei Hinterbliebenen. Um festzustellen, an welchen Stellen Qualitätsverbesserungsmaßnahmen nötig sind, kann ein Vergleich der tatsächlichen Qualität (Ist-Werte) mit den Soll-Vorgaben Hinweise im klinischen Alltag geben. Hierzu könnte ein systematisches Belastungs- und Symptomscreening dienen, um die richtigen Patienten zum passenden Zeitpunkt zu identifizieren. Moderne Palliativmedizin umfasst somit nicht nur die Versorgung unheilbar kranker Menschen am Lebensende, sondern kann zunehmend als wichtiger Aspekt auch in der interdisziplinären Versorgung verstanden werden. / In the next years the Robert-Koch-Institute asserted that the amount of persons, who will get the diagnosis pancreastumour, will constantly grow. One reason ist the fact that peolpe getting older and there are more and more general living conditions who can cause cancer. The diagnosis and therapy for patients with pancreastumours implies a big break in the quality of life , coherent with a big symptom burden. The aim of this clinical retrospective trial was to examine the provision of end-of-life care on the basis of quality indicators initiated from Craig C. Earle for patients with advanced and metastasized pancreastumours. Additionally we tried to generate optimated decisions-algorithm from the results. We used an questionary to examine 202 patients. The collective was divided in two parts. One part was registered in the CCC in Würzburg (Comprehensive Cancer Center) from 2010 to 2014 and the other part was registered at the university-hospital in Magdeburg from 2005 to 2014. Next we subdivided 132 primary metastasized cases (UICC-stage IV) and 53 relapses (UICC-stage I-IV). We also compared the groups with and without contact to palliative-medicine. The collective contained 74 women and 126 men and a mean age of 68,8 at time of diagnosis. The Karnofsky-Index was 90 or 100 by most of the patients. The majority had UICC-stage IV (n = 132). 42,1 % (n = 85) had contact to palliative-medicine. Most of the patients had contact earlier than 3 days before death (77,7 %). It was not possible to establish statistical significance between tumourspecific therapy (chemotherapy or radiation) in the last 14 days before death and contact to palliative-medicine 3 days before death because the sample was too small. Neither one of the patients got radiation and had contact to palliative-medicine 3 days before death. Only one patient received chemotherapy and had contact to palliative-medicine. Patients without contact to palliative-medicine had more tumourspecific therapy (chemotherapy: n = 6; radiation: n = 5) in the last 14 days before death. The examined patients from Würzburg mentioned mostly symptom burdens such as fatigue, degradation of the general condition, sleep disturbance or temperature. Followed from depression, fear, trouble and disturbance with having meal, nausea and vomiting. Most of the patients from Würzburg with contact to palliative-medicine had problems and complications such as icterus, anemia and transformation in the hemogram, followed by ileus, nausea or vomiting, peritonealcarcinosis and symptomatic ascites in the time period from last 6 month until 30 days before death. In the last 30 days before death most of the problems and complications from patients with contact to palliative-medicine in Würzburg were kidney- and liver failure, uramic coma, metabolic acidosis, bleedings, ileus, nausea or vomiting and peritonealcarnosis with symptomatic ascites. 54,4 % of the patients from Würzburg with contact to palliative-medicine and 50,0 % of the patients from Würzburg without contact to palliative-medicine had an advance directives. Only a small number of patients had a health care proxy or an emergeny plan. The majority of the patients had one stop in the emergeny ward in the last 6 month of life. The quantity of patients subsided strongly with two or more stops. We observed the same development in the last 30 days before death with stop in the emergency ward or intensive care unit. It was not able to differntiate if the stop in the emergency ward or intensive care unit was before or after the first contact with palliative-medicine. We only stated the fact that there was a contact. This implies that it was not really possible to recognize in what way the palliative-medicine was able to take influence on this decision. The estimated median survival time of the patients in Würzburg was 6,9 month. In the years 2010 and 2011 together, the median survival time was 6,2 month. After establishing the palliative-medicine-service at the university hospital in Würzburg in the year 2012, the median survival time for the patients from Würzburg was 8,3 month for the years 2012 and 2013. Women lived 2,7 month longer than men in the collective. Patients with contact to palliative-medicine lived two month more than patients without contact to palliative-medicine. 12 month after getting the diagnosis more than half of both groups were not alive. After 24 month only five patients from Würzburg were alive. The criterions from Craig C. Earle were not been fully reached. The amount of patients with contact to palliative-medicine could be more (42,1 %). It is enjoyable that the quantity of patients with contact to palliative-medicine less than 3 days before death is low (8,2 %). The rate of changing or starting a new regimen of tumourspecific therapy in the last 30 days of life is still too high (7,1 %). In this case the standard formulated through Craig C. Earle shows multiple oversteppings in the group with patients who had contact to palliative-medicine. Tumorspecific therapy in the last 14 days of life in the group of patients with contact to palliative-medicine was really low (4,7 % chemotherapy; 1,2 % radiation). Generally because of the small sample there is no possibilty to a final statement related to the effectiveness of palliative-medicine in this trial. For the most part it was not able to show statistic significance. In final reflection of all findings in this work, one can assume that the therapy at the end of life has to be evaluated and adapted to every new situation. Previously the procedure of palliation of complications or symptoms has to be discussed. Respectively by choosing the therapy every patient should bei regarded and respected as an individual connected to different clinical parameters. There is still the defiance to objectify the quality of life from patients who have cancer. The literature shows that the early integration of palliative-medicine stores a lot of advantages. Palliative-medicine often is related with a lower rate of hospitality, better handling of symptom burden, lower costs, prolongation of survival time and a reduced stress load for the bereaved. To get a comparison between quality indicators and to identify fields to improve in daily clinical business, one has to relate the actual value with the given value. Therefore a systematic screening of burdens and symptoms could be useful, to identify the right patient at the right moment with the best provision. Modern palliative-medicine should not only put a focus on care with patients who are uncurable ill at the end of life. No, palliative-medicine should be seen as an important aspect of interdisciplinary care.

The purpose of this article is to critically analyze the concept of self-perceived burden. The Rodgers Evolutionary Model is augmented with concept critique, a dialogic process grounded in critical hermeneutics. Self-perceived burden is a relatively mature concept with psychological, relational, and dimensional attributes that are shaped by culture and sociopolitical structures. The antecedents are demographics, circumstances, diagnoses, symptoms, prognosis, comorbidities, and knowledge and beliefs. The consequences are psychological, decisional, relational, and existential. Sociocultural factors such as universal health coverage, Confucian ethics, Buddhist/Taoist ethics, karma, and individualist- versus communitarian-based relationships are brought to light. Psychological and relational antecedents and consequences of self-perceived burden were found to be salient.

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The purpose of this article is to critically analyze the concept of self-perceived burden. The Rodgers Evolutionary Model is augmented with concept critique, a dialogic process grounded in critical hermeneutics. Self-perceived burden is a relatively mature concept with psychological, relational, and dimensional attributes that are shaped by culture and sociopolitical structures. The antecedents are demographics, circumstances, diagnoses, symptoms, prognosis, comorbidities, and knowledge and beliefs. The consequences are psychological, decisional, relational, and existential. Sociocultural factors such as universal health coverage, Confucian ethics, Buddhist/Taoist ethics, karma, and individualist- versus communitarian-based relationships are brought to light. Psychological and relational antecedents and consequences of self-perceived burden were found to be salient.

Introduction: Of the 119.2 million visits to the emergency department (ED) in 2006, it was estimated that about 249,000 visits resulted in the patient dying or being pronounced dead on arrival. In two national studies of emergency nurses' perceptions of end-of-life (EOL) care, ED design was identified as a large and frequent obstacle to providing EOL care. The purpose of this study was to determine the impact of ED design on EOL care as perceived by emergency nurses. Methods: A national, geographically dispersed, random sample of 500 members of the Emergency Nurses Association were sent a 25-item questionnaire regarding ED design as it impacts EOL care. Inclusion criteria were nurses who could read English, worked in an emergency department, and had cared for at least one patient at the EOL. Descriptive statistics were calculated for the Likert-type and demographic items. Open-ended questions were analyzed using content analysis. Results: After two mailings yielding 198 usable responses, nurses did not report ED design to be as large an obstacle to EOL care as previous studies had suggested. Nurses did report the ED design helped EOL care at a greater rate than it obstructed EOL care. Nurses also believed they had little input into unit design or layout changes. The most common request for design change was private places for family members to grieve. Thirteen nurses also responded with an optional drawing of suggested emergency department designs. Discussion: Overall, nurses reported some dissatisfaction with ED design, but also believed they had little to no input in unit design improvement. Improvements to EOL care might be achieved if ED design suggestions from emergency nurses were considered by committees that oversee remodeling and construction of emergency departments. Further research is needed to determine the impact of ED design on EOL care in the emergency department.

Nursing ethics in end-of-life care is often framed in reference to dramatic moral dilemmas and resulting moral distress that nurses experience in practice. While important, this framing obscures the moral significance of nurses’ everyday practice. The purpose of this study was to explore nurses’ moral experiences of palliative and end-of-life care, including situations that are enriching. The research question was: What are the moral experiences of nurses engaged in ethically meaningful situations in end-of-life care? Semi-structured interviews were conducted with five nurses from across Canada who practice in settings where palliative and/or end-of-life care are an important part of their role. Informed by interpretive description and a theoretical scaffold about nurses’ moral practice, a descriptive and thematic analysis of the data was performed. The participants described ethical challenges relating to patient autonomy, futility, prognostication, and navigating requests for medical assistance in dying. Experiences that were ethically enriching involved situations where the nurse, patient, and family worked together to create a peaceful and dignified death. Taken together, the participants’ narratives revealed them as morally engaged in their everyday practice, where such moral engagement is both reflective and relational. This study expands understanding about how nurses’ stories of end-of-life care reveal their capacity for moral sensitivity. This study also contributes to the articulation of a theoretical lens for examining the moral dimensions of nursing work. By explicating the relational dimensions of ethically meaningful experiences, including relationships with wider structures that facilitate and constrain the possibility for ethical action, this theoretical lens can support researchers to think creatively about palliative and end-of-life nursing from an explicitly ethical perspective.

Nearly one-third of all pediatric oncology patients die from their disease, so nurses need to have an evidence-based standard of practice to guide their role in end-of-life decision-making. The purpose of this integrative review is to analyze current research on end-of-life decision-making within pediatric oncology to create a practice guideline for nurses working with this patient population. Eleven studies were examined to identify nursing interventions regarding the role of the nurse in end-of-life care, the role of the nurse in end-of-life decision-making, parent involvement in end-of-life decision-making, and child involvement in end-of-life decision-making, including the child's ability to participate in end-of-life decision-making. Based on the findings, the researcher identified several interventions that can be used by nurses to facilitate end-of-life discussion and decision-making that includes both parent and, when appropriate, the child.

京都大学 / 新制・課程博士 / 博士(社会健康医学) / 甲第24291号 / 社医博第127号 / 新制||社医||12(附属図書館) / 京都大学大学院医学研究科社会健康医学系専攻 / (主査)教授 古川 壽亮, 教授 髙橋 良輔, 教授 阪上 優 / 学位規則第4条第1項該当 / Doctor of Public Health / Kyoto University / DFAM