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Objective: In 2009, Palliative care was incorporated into the medical curriculum as Cross-Sectional Subject 13 (QB13) by means of the revision of the Medical Licensing Regulations for Physicians. The aim of this study was to determine the strengths and deficits of QB13 student education for palliative care in clinical practice in a multi-centre setting and to identify potential for improvement.Methods: Online questionnaires filled out by medical students during their Practical Year (PY) and resident physicians from the university hospitals in Aachen, Düsseldorf, and Cologne were descriptively analyzed using SPSS; free-text responses were categorized and quantified. Semi-structured interviews with the resident physicians (using a mixed-methods design) were analyzed through content analysis. Emerging categories were quantified.Results: Analysis of 130 fully completed questionnaires and 23 interviews revealed that participants particularly benefited from patient- and practice-oriented small-group sessions for their clinical work. Despite some university-specific differences, the PY students identified a need for training in end-of-life-care, while resident physicians saw a need for training primarily in dealing with patients and their relatives. They also reported deficits in transferability. Conclusion: QB13 should be organised in cross-university curricula and provide sufficient resources for practical-oriented small-group teaching. Based on the "unit of care", besides caring for palliative patients, dealing with patients' families should also be an education focus. To improve transferability into clinical practice, students should be actively involved in the care of palliative patients., Zielsetzung: Im Jahr 2009 wurde Palliativmedizin nach Vorgabe der ärztlichen Approbationsordnung als Querschnittsbereich 13 (QB13) in das Curriculum Humanmedizin aufgenommen. Ziel dieser Studie war es, Stärken und Defizite der studentischen Lehre des QB13 für die palliativmedizinische Versorgung im klinischen Alltag multizentrisch zu ermitteln und Verbesserungspotenzial abzuleiten.Methodik: Die von Studierenden im Praktischen Jahr (PJ) und Ärzt*innen in Weiterbildung (ÄiW) der Unikliniken Aachen, Düsseldorf, Köln ausgefüllten online-Fragebögen wurden mittels SPSS deskriptiv statistisch ausgewertet; Freitextantworten wurden kategorisiert und quantifiziert Die leitfadengestützten Interviews mit den ÄiW (Mixed-Method-Design) wurden inhaltsanalytisch ausgewertet. Entstehende Kategorien wurden quantifiziert.Ergebnisse: Die Auswertung der 130 vollständig ausgefüllten Fragebögen und der 23 Interviews ergab, dass die Teilnehmenden für ihre klinische Tätigkeit insbesondere von patient*innen- und praxisnahen Kleingruppenveranstaltungen profitierten. Bei z.T. universitätsspezifischen Unterschieden wurde ein Hauptschulungsbedarf von den PJ-Studierenden für die Terminalphase, von den ÄiW vor allem im Umgang mit An- und Zugehörigen gesehen. Letztere beklagten zudem Defizite in der Transferleistung. Schlussfolgerung: Der QB13 sollte in universitätsübergreifenden Curricula organisiert werden und hierbei genügend Ressourcen für praxisnahen Kleingruppenunterricht vorhalten. Angelehnt an die "unit of care" sollte neben der Versorgung von Palliativpatient*innen auch der Umgang mit An- und Zugehörigen einen Lehrschwerpunkt darstellen. Zur Verbesserung der Transferleistung in den klinischen Alltag sollten Studierende aktiv in die Versorgung von Palliativpatient*innen einbezogen werden.

BACKGROUND: Palliative care needs in patients with cardiovascular diseases (CVD) are expected to increase. For the planning of equitable palliative care, it is important to understand where people with CVD die. The aim was to examine trends in place of death, associated factors including utilization of specialized palliative services, and to what extent longitudinal development is influenced by national policy. METHODS: A population-level registry study of place of death for adults deceased due to CVD (n = 209 671) in Sweden 2013-2019. Linear regression analysis was applied. RESULTS: The predominant place of death was nursing home (39.1 %) and hospital (37.6 %), followed by home (22.0 %). From 2013 to 2019 home deaths increased by 2.8 % and hospital deaths decreased by 3.0 %. An overall downward trend was found for dying in hospital compared to dying at home. With variations, this trend was seen in all healthcare regions and for all CVD types, except Stockholm and cerebrovascular disease, with no significant trend. Overall, but with cross-regional variations, 2.1 % utilized specialized palliative services, while 94.2 % had potential palliative care needs. Other variables significantly influencing the trend were age and having had an unplanned healthcare visit. CONCLUSION: Despite a slight positive trend, only a minority of people with CVD die in their own home. Regional variations in place of death and the low and varied utilization of specialized palliative services indicate inequity in access to palliative care. Hence, the impact of current national policies is questionable and calls for strengthening through inclusion of early palliative care in specific CVD policies.

Background: The majority of palliative care patients express a preference for remaining at home for as long as possible. Despite progression of disease there is a strong desire to die at home. Nonetheless, there are transfers between care settings, demonstrating a discrepancy between desired and actual place of death. Aim: To map the prevalence of patients near death undergoing specialized palliative home care and being transferred to inpatient care in Sweden. Methods: A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients >= 18 years of age enrolled in specialized palliative home care with dates of death between 1 November 2015 and 31 October 2022 were included (n = 39,698). Descriptive statistics were used. Results: Seven thousand three hundred eighty-three patients (18.6%), approximately 1,000 per year, were transferred to inpatient care and died within seven days of arrival. A considerable proportion of these patients died within two days after admission. The majority (73.6%) were admitted to specialized palliative inpatient care units, 22.9% to non-specialized palliative inpatient care units and 3.5% to additional care units. Transferred patients had more frequent dyspnoea (30.9% vs. 23.2%, p < 0.001), anxiety (60.2% vs. 56.5%, p < 0.001) and presence of several simultaneous symptoms was significantly more common (27.0% vs. 24.8%, p 0.001). Conclusion: The results show that patients admitted to specialized palliative home care in Sweden are being transferred to inpatient care near death. A notable proportion of these patients dies within two days of admission. Common features, such as symptoms and symptom burden, can be observed in the patients transferred. The study highlights a phenomenon that may be experienced by patients, relatives and healthcare personnel as a significant event in a vulnerable situation. A deeper understanding of the underlying causes of these transfers is required to a

AIM: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died during their first year of life with children who died at 1-17 years of age. METHODS: We hypothesised that there might be variations in place of death between the defined groups. Utilising national registry data, descriptive statistics were used to assess the distribution and variations in the place of death. Logistic regression analyses were conducted to ascertain the impact of associated factors. RESULTS: Most children died in hospitals (74.7%). The hypothesis postulating divergences in the place of death between age groups was not substantiated. Sex and birthplace showed no significant differences in home deaths. Deaths due to malignancies had a relatively high likelihood of occurring at home (39.0%). For perinatal diagnoses, the incidence of home deaths was relatively low (1.5%). CONCLUSION: Children who received support from a specialist palliative service in their own homes were notably less likely to die in a hospital setting compared to those who did not receive such support. An unplanned hospital visit increased the likelihood of hospital death.

This study explores how papers published in internationaljournals in palliative and end-of-life care report ethical approval andinformed consent. A literature search following PRISMA guidelines wasconducted in PubMed, the Web of Science Core Collection, Scopus, theProQuest Social Science Premium Collection, PsycINFO, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL). A total of169 empirical studies from 101 journals were deductively coded andanalysed. The results showed that 5% of publications provided no information on ethical approval, 12% reported minimal information, 56%reported rudimentary information, and 27% reported comprehensivedetails. We also found that 13% did not report any information oninformed consent, 17% reported minimal information, 50% reported rudimentary information, and 19% reported comprehensive details. The prevalence of missing and incomplete ethical statements and inadequatereporting of informed consent processes in recent publications raises concerns and highlights the need for improvement. We suggest that journalsadvocate high reporting standards and potentially reject papers that donot meet ethical requirements, as this is the quickest path toimprovement.

This study aimed to comparatively analyze the effect of the person-centered prescription (PCP) model on pharmacotherapeutic indicators and the costs of pharmacological treatment between a dementia-like trajectory and an end-stage organ failure trajectory, and two states of frailty (cut-off point 0.5). A randomized controlled trial was conducted with patients aged ≥65 years admitted to a subacute hospital and identified by the Necessity of Palliative Care test to require palliative care. Data were collected from February 2018 to February 2020. Variables assessed included sociodemographic, clinical, degree-of-frailty, and several pharmacotherapeutic indicators and the 28-day medication cost. Fifty-five patients with dementia-like trajectory and 26 with organ failure trajectory were recruited observing significant differences at hospital admission in the mean number of medications (7.6 vs. 9.7; p < 0.004), the proportion of people on more than 10 medications (20.0% vs. 53.8%; p < 0.002), the number of drug–drug interactions (2.7 vs. 5.1; p < 0.006), and the Medication Regimen Complexity Index (MRCI) (25.7 vs. 33.4; p < 0.006), respectively. Also, regarding dementia-like patients, after application of the PCP model, these patients improved significantly in the intervention group compared to the control group in the mean number of chronic medications, STOPP Frail Criteria, MRCI and the 28-day cost of regular medications (p < 0.05) between admission and discharge. As for the PCP effect on the control and the intervention group at the end-stage organ failure, we did not observe statistically significant differences. On the other hand, when the effect of the PCP model on different degrees of frailty was evaluated, no unequal behavior was observed.

Background: The Emergency Department (ED) has increasingly been recognized as an important site of care for older adults with unmet palliative care needs. Despite this, no clear model of care delivery has emerged. Aim: To assess the acceptability and feasibility of a scripted palliative care communication intervention in the ED directed by social workers. We hypothesized that the intervention would be feasible, acceptable to patients and ED social workers, and that the collection of patient outcomes would be possible. Design: A prospective, unblinded, pilot randomized clinical trial of older adults with serious illness presenting to the ED. Patients were randomized to either receive a social worker-directed palliative care intervention (n-65), which consisted of a conversation focused on patients goals, values, hopes and worries, or to usual care (n-52). The intervention was evaluated for feasibility and acceptability. Results: Of patients randomized to the intervention arm, 66% (43/65) completed a conversation with the social worker. Focus group feedback with the social workers further demonstrated the feasibility of these conversations. There was minimal (12%) loss to follow-up. Of the patients who received the intervention, the majority reported that they appreciated the social workers bringing up their goals for the future (77%), their social workers asking about their fears and worries (72%), and they liked the way the conversation was set up (81%). Social workers administered 95% of the conversation components. Conclusions: This pilot trial demonstrated the feasibility and acceptability of a social worker-directed, scripted palliative care communication intervention in a single urban, academic ED.

Einleitung In Deutschland wird bis dato von einer Prävalenz von ca. 50.000 Kindern und Jugendlichen ausgegangen, die mit lebensbedrohlichen und lebensverkürzenden Erkrankungen leben. Diese in der Versorgungslandschaft kommunizierte Zahl beruht auf einer Übertragung empirischer Daten aus England. Methoden In Zusammenarbeit mit dem Spitzenverband Bund der Krankenkassen (GKV-SV) und dem Institut für angewandte Gesundheitsforschung Berlin GmbH (InGef) wurden die Abrechnungsdaten der von den gesetzlichen Krankenkassen dokumentierten spezifischen Behandlungsdiagnosen der Jahre 2014–2019 analysiert und erstmals Prävalenzdaten von Betroffenen im Alter von 0–19 Jahren erhoben. Zudem wurden mittels der Daten von InGef die Prävalenzwerte nach Diagnosegruppierung, den Together-for-Short-Lives(TfSL)-Gruppen 1–4, und auf Grundlage der in den englischen Prävalenzstudien verwendeten (und hier aktualisierten) Kodierungsliste berechnet. Ergebnisse Die Datenanalyse ermöglichte die Festlegung eines Prävalenzbereichs von 319.948 (InGef – adaptierte Fraser-Liste) bis 402.058 (GKV-SV) unter Berücksichtigung der TfSL-Gruppen. Die TfSL-1-Gruppe stellt mit 190.865 Erkrankten die größte Gruppe dar. Diskussion und Fazit Erstmalig liegen durch diese Untersuchung für Deutschland Prävalenzwerte von 0‑ bis 19-Jährigen mit lebensbedrohlichen und lebensverkürzenden Diagnosen vor. Da sich im Forschungsdesign die Falldefinitionen und die einbezogenen Versorgungssettings (ambulant/stationär) unterscheiden, differieren die aus den Daten des GKV-SV und des InGef erhobenen Prävalenzwerte. Aufgrund der sehr heterogenen Krankheitsverläufe, Überlebenschancen und Mortalitätsraten können keine unmittelbaren Ableitungen auf palliative und hospizliche Versorgungsstrukturen getroffen werden., Introduction In Germany, a prevalence of approximately 50,000 children and adolescents living with life-threatening and life-limiting diseases is currently assumed. This number, which is communicated in the supply landscape, is based on a simple transfer of empirical data from England. Methods In cooperation with the German National Association of Health Insurance Funds (GKV-SV) and the Institute for Applied Health Research Berlin GmbH (InGef), the billing data of the specific treatment diagnoses documented by statutory health insurance funds for the years 2014–2019 were analyzed and – for the first time – prevalence data of affected 0‑ to 19-year-olds were collected. In addition, the data from InGef was used to calculate the prevalence by diagnosis grouping, the Together for Short Lives (TfSL) groups 1–4, and based on the (updated) coding lists from the English prevalence studies. Results The data analysis determined a prevalence range of 319,948 (InGef – adapted Fraser list) to 402,058 (GKV-SV), with consideration of the TfSL groups. The TfSL‑1 group represents the largest group with 190,865 patients. Discussion and conclusion This study is the first to provide the prevalence of 0‑ to 19-year-olds living with life-threatening or life-limiting diseases in Germany. Since the case definitions and the included care settings (outpatient/inpatient) differ in the research design, the prevalence values collected from the GKV-SV and InGef are also different. Due to the very heterogeneous course of the diseases, chances of survival, and mortality rates, no direct conclusions can be drawn for palliative and hospice care structures., Peer Reviewed

CONTEXT: Palliative care (PC) benefits critically ill patients but remains underutilized. Important to developing interventions to overcome barriers to PC in the ICU and address PC needs of ICU patients is to understand how, when, and for which patients PC is provided in the ICU. OBJECTIVES: Compare characteristics of specialty PC consultations in the ICU to those on medical-surgical wards. METHODS: Retrospective analysis of national Palliative Care Quality Network data for hospitalized patients receiving specialty PC consultation January 1, 2013 to December 31, 2019 in ICU or medical-surgical setting. 98 inpatient PC teams in 16 states contributed data. Measures and outcomes included patient characteristics, consultation features, process metrics and patient outcomes. Mixed effects multivariable logistic regression was used to compare ICU and medical-surgical units. RESULTS: Of 102,597 patients 63,082 were in medical-surgical units and 39,515 ICU. ICU patients were younger and more likely to have non-cancer diagnoses (all P < 0.001). While fewer ICU patients were able to report symptoms, most patients in both groups reported improved symptoms. ICU patients were more likely to have consultation requests for GOC, comfort care, and withdrawal of interventions and less likely for pain and/or symptoms (OR-all P < 0.001). ICU patients were less often discharged alive. CONCLUSION: ICU patients receiving PC consultation are more likely to have non-cancer diagnoses and less likely able to communicate. Although symptom management and GOC are standard parts of ICU care, specialty PC in the ICU is often engaged for these issues and results in improved symptoms, suggesting routine interventions and consultation targeting these needs could improve care.

Abstract Background The global population is ageing, and rates of multimorbidity and chronic illness are rapidly rising. Given specialist palliative care has been shown to improve overall care and reduce health care costs, how best to provide this care to older people is internationally significant. Aim To examine the knowledge, attitudes and practices of geriatricians in providing palliative care and working with specialist palliative care services. We also aimed to capture self-reported barriers, confidence and satisfaction in providing palliative care. Design A prospective cross-sectional study surveying Australasian geriatricians was conducted. Setting/Participants This was a voluntary anonymous online survey, distributed to all full members of the Australian and New Zealand Society of Geriatric Medicine. Results A total of 168 completed responses were received; 58.3% were female and 36.6% had over 20 years of clinical experience. Most geriatricians (85%) reported caring for patients in their last 12 months of life represented a substantial aspect or most of their practice. Geriatricians overwhelmingly believed they should coordinate care (84%) and derived satisfaction from providing palliative care (95%). The majority (69%) believed all patients with advanced illness should receive concurrent specialist palliative care. Regarding knowledge, participants scored an average of 13.5 correct answers out of 18 in a Modified Palliative Care Knowledge Test. Conclusions Geriatricians find reward in providing generalist palliative care to their patients; however, potential exists for

ContextHealth systems have aspired to integrate palliative care (PC) into the emergency department (ED) to improve care quality for over a decade, yet there are very few examples of implemented models in the literature. The coronavirus disease 2019 (COVID-19) pandemic led to an increase in the volume of seriously ill patients in EDs and a consequent rapid increase in PC integration in many EDs.ObjectivesTo describe the new PC-ED delivery innovations that emerged during the COVID-19 pandemic.MethodsFor this qualitative study of PC programs in EDs, semistructured interviews were conducted with ED and PC clinicians between June 30, 2020 and August 18, 2020. Participants were asked about PC-ED integration before, during, and after COVID. We conducted a two-phased rapid analysis using a rapid analysis template and consolidated matrix to identify innovations.ResultsUsing purposive and snowball sampling, we interviewed 31 participants, representing 52 hospitals. Several new innovations in care delivery were identified. These included elements of fully embedded PC, the use of PC extenders, technology both within the electronic medical record and outside it, and innovations in training emergency clinicians in primary PC skills to support care delivery. Most PC efforts focused on increasing goals-of-care conversations. Institutions that implemented these programs reported that they increased PC utilization in the ED, were well received by clinicians, and changed patient's care trajectories.ConclusionSeveral new innovations in PC-ED care delivery emerged during COVID. Many innovations leveraged different types of clinicians to deliver care, an increased physical presence of PC in the ED, and used technology to enhance care delivery. These innovations may serve as a framework for institutions as they plan for evolving needs in the ED during and after COVID. Additional research is needed to evaluate the impact of these programs and understand their applicability beyond the pande

Background: Globally, the need for palliative care will increase as a result of the ageing of populations and the rising burden of cancer, non-communicable diseases as well as some communicable diseases. Physicians and registered nurses working in palliative care should have a sufficient level of education and competence in managing the changing needs and requirements of palliative care. There is, however, need for evidence-based palliative care training and education of physicians and registered nurses. The purpose of this study was to describe the views of physicians and registered nurses regarding future competence needs within palliative care. Methods: The study was conducted through use of a cross-sectional qualitative design. A total of 54 physicians and 110 registered nurses completed an open-ended questionnaire about the future competence needs of palliative care. The data were analyzed using inductive content analysis. Results: The results revealed four main competence needs within palliative care for the coming decade: palliative care competence at all levels within healthcare and social welfare services; individualized palliative care competence; person-centered encounters competence; and systematic competence development within palliative care. Conclusions: The results offer cues for education and professional development, which can be used to support physicians and registered nurses when future palliative care competences are included in educational programs. Seamless cooperation between palliative care services and educational institutions is recommended to ensure that undergraduate and postgraduate education is based on a continuous assessment of competence requirements within the field of palliative care. Therefore, online multi-professional simulations, for example, could be used to enhance future competencies within palliative care; undergraduate medical, nursing and allied healthcare students as well as postgraduate palliative care profes

Background: Unplanned readmissions or emergency visits (EVs) after discharge from hospital are frequent in patients in palliative care. Strategies to anticipate and prevent rapid deterioration of health are needed. Objective: Assessing feasibility and predictive ability of remote monitoring using wearables. Design: Prospective observational feasibility study in a single center. Setting/Subjects: Thirty cancer patients with an estimated life expectancy of >8 weeks to <12 months, aged >18 years and being discharged from inpatient to outpatient care were included. Measurements: Patients were provided with a smartphone, including the preinstalled "Activity Monitoring" application and a sensor-equipped bracelet. Follow-up was 12 weeks. Both devices recorded several features (e.g., vital signs). Visual analog scale (VAS) for pain and distress was reported once daily and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) once weekly. Statistical methods were applied to explore relationship between sensor data, self-reports, and EVs or readmissions or death. Results: Between February 2017 and May 2018, 30 patients were included. Twenty-five of 30 participants (83%) completed 12 weeks of follow-up. On average, bracelet was worn on 53% and smartphone on 85% of study days. Completion rate of daily digital questionnaires for subjective ratings was 73%. Eight unplanned hospital readmissions occurred. Ratings of pain, distress, and QLQ-C30 scores were not associated with readmission, whereas resting heart rate, resting heart rate variability, as well as speed of steps differed significantly in patients with and without readmission. Conclusions: Monitoring of palliative cancer patients using wearables is feasible. First results indicate that mobile health features might be promising biomarkers to predict unplanned readmissions.

The benefits of palliative care rely on how healthcare professionals assess patients' needs in the initial encounter/s; crucial to the design of a personalised therapeutic plan. However, there is currently no evidence-based guideline to perform this needs assessment. We aim to design and evaluate a proactive and systematic method for the needs assessment using quality guidelines for developing complex interventions. This will involve patients, their relatives and healthcare professionals in all phases of the study and its communication to offer clinical practice a reliable approach to address the palliative needs of patients. To design and assess the feasibility of an evidence-based, proactive and systematic Multidimensional needs Assessment in Palliative care (MAP) as a semistructured clinical interview guide for initial palliative care encounter/s in patients with advanced cancer. This is a two-phase multisite project conducted over 36 months between May 2019 and May 2022. Phase I includes a systematic review, discussions with stakeholders and Delphi consensus. The evidence gathered from phase I will be the basis for the initial versions of the MAP, then submitted to Delphi consensus to develop a preliminary guide of the MAP for the training of clinicians in the feasibility phase. Phase II is a mixed-methods multicenter feasibility study that will assess the MAP's acceptability, participation, practicality, adaptation and implementation. A nested qualitative study will purposively sample a subset of participants to add preliminary clues about the benefits and barriers of the MAP. The evidence gathered from phase II will build a MAP user guide and educational programme for use in clinical practice. Ethical approval for this study has been granted by the university research ethics committee where the study will be carried out (approval reference MED-2018-10). Dissemination will be informed by the results obtained and communication will occur throughout.

The coronavirus disease 2019 (COVID-19) pandemic has highlighted the need for health care providers skilled in rapid and flexible decision making, effective and anticipatory leadership, and in dealing with trauma and moral distress. Palliative care (PC) workers have been an essential part of the COVID-19 response in advising on goals of care, symptom management and difficult decision making, and in supporting distressed health care workers, patients, and families. We describe Global Palliative Education Collaborative (GPEC), a training partnership between Harvard, University of California San Francisco, and Tulane medical schools in the U.S.; and two international PC programs in Uganda and India. GPEC offers U.S.-based PC fellows participation in an international elective to learn about resource-limited PC provision, gain perspective on global challenges to caring for patients at the end of life, and cultivate resiliency. International PC colleagues have much to teach about practicing compassionate PC amidst resource constraints and humanitarian crisis. We also describe a novel educational project that our GPEC faculty and fellows are participating in-the Resilience Inspiration Storytelling Empathy Project-and discuss positive outcomes of the project.

ContextAlthough the importance of palliative care (PC) integration in the emergency department (ED) has long been recognized, few formalized programs have been reported, and none have evaluated the experience of ED clinicians with embedded PC.ObjectivesWe evaluate the experience of ED clinicians with embedded PC in the ED during the coronavirus disease pandemic.MethodsED clinicians completed a survey about their perceptions of embedded PC in the ED. We summarized responses to closed-ended items using descriptive statistics and analyzed open-ended items using thematic analysis.ResultsThere were 134 ED clinicians surveyed. About 101 replied (75% response rate). Of those who had interacted with PC, 100% indicated a benefit of having PC involved. These included freeing up ED clinicians for other tasks (89%), helping them feel more supported (84%), changing the patients care trajectory (67%), and contributing to clinician education (57%) and skills (49%). Among barriers related to engaging PC were difficulty locating them (8%) and lack of time to consult because of ED volume (5%). About 98% of respondents felt that having PC in the ED was either valuable or very valuable. Open-ended responses reflected a positive impact on clinician wellness and improvement in access to high-quality goal-concordant care. Clinicians expressed gratitude for having PC in the ED and noted the importance of having readily available and easily accessible PC in the ED.ConclusionED clinicians' perception of embedded PC was overall positive, with an emphasis on the impact related to task management, enrichment of PC skills, providing support for the team, and improved care for ED patients.

A fully human experience of the final steps of existence is a request and an unavoidable right of every human being. For this to be possible, it is essential to have a medicine that, by taking care of the patient and accompanying him with all care, and by taking care of his various needs, helps him to overcome this crossroads, putting within his reach, even more so, a more authentic vision of himself, of others, of God.The article presents palliative medicine as a workshop of learning and creativity, where the greatness and dignity of life can be savored. Far from being merely a sufferer, the terminally ill person lives a time of «mystery», graced with a unique occasion to put the finishing touches to his or her life journey., Una vivencia plenamente humana de la fase final de la existencia es una exigencia y un derecho ineludible de todo ser humano. Para que ello sea posible, se hace imprescindible una medicina que, cuidando y acompañando al paciente con todo esmero, y haciéndose cargo de sus variadas necesidades, le ayude a salir airoso de esta encrucijada, poniendo a su alcance, más aún, una visión más auténtica de sí mismo, de los demás, de Dios. El artículo presenta la medicina paliativa como un taller de aprendizaje y creatividad, donde se saborea la grandeza y dignidad de la vida. Lejos de ser meramente un sufriente, el enfermo terminal vive un tiempo de «misterio», agraciado con una ocasión singular para poner broche de oro a su itinerario de vida

Purpose – Considering the great need for palliative care in hospitals, it is essential for hospital staff to havepalliative care knowledge. Palliative consultations have been shown to have positive effects on in-hospital care.However, barriers to contact with and uptake of palliative consultation advice are reported, posing a need forfurther knowledge about the process of palliative consultations. The purpose of this study therefore was toexamine how palliative consultations in hospitals are practised, as perceived by consultants and health careprofessionals on receiving wards.Design/methodology/approach – Focus groups with palliative care consultation services, health carepersonnel from receiving wards and managers of consultation services. Interpretive description and constantcomparative method guided the analysis.No ordinaryconsultationThe authors would like to thank participating colleagues for sharing their knowledge and experiencesabout palliative consultations.Ethics approval and consent to participate: The project received ethical approval from the SwedishEthical Review Authority, No. 809–16. Informed consent preceded participation for all of the participants.Consent for publication: Not applicable.Availability of data and material: The datasets generated and analysed during the current study are notpublicly available due to the inclusion of potentially sensitive individual data about health status. Theethical approval includes a statement that the data will be kept in a private repository but are availablefromthe corresponding author on reasonable request.Funding: Sahlgrenska Academy at the University of Gothenburg.Authors' contributions: JO, HB and JB planned the study. All authors conducted focus group €interviews. Analysis and interpretation of focus group data was performed by SB with support from JO, €HB and JB. SB wrote the first draft of the manuscript, JO, HB and JB commented on the manuscript and €contributed to the final version. The final manuscr

Hospice and Palliative Medicine - Alexandra Evans, DO Approaching Goals of Care in the Outpatient World - Elham Siddiqui, MD Inpatient Goals of Care Discussion - Adam Pennarola, MD

Background: Early palliative care team consultation has been shown to reduce costs of hospital care. The objective of this study was to investigate the association between palliative care team (PCT) consultation and the content and costs of hospital care in patients with advanced cancer. Material and Methods: A prospective, observational study was conducted in 12 Dutch hospitals. Patients with advanced cancer and an estimated life expectancy of less than 1 year were included. We compared hospital care during 3 months of follow-up for patients with and without PCT involvement. Propensity score matching was used to estimate the effect of PCTs on costs of hospital care. Additionally, gamma regression models were estimated to assess predictors of hospital costs. Results: We included 535 patients of whom 126 received PCT consultation. Patients with PCT had a worse life expectancy (life expectancy <3 months: 62% vs. 31%, p <.01) and performance status (p <.01, e.g., WHO status higher than 2:54% vs. 28%) and more often had no more options for anti-tumour therapy (57% vs. 30%, p <.01). Hospital length of stay, use of most diagnostic procedures, medication and other therapeutic interventions were similar. The total mean hospital costs were €8,393 for patients with and €8,631 for patients without PCT consultation. Analyses using propensity scores to control for observed confounding showed no significant difference in hospital costs. Conclusions: PCT consultation for patients with cancer in Dutch hospitals often occurs late in the patients’ disease trajectories, which might explain why we found no effect of PCT consultation on costs of hospital care. Earlier consultation could be beneficial to patients and reduce costs of care.

Background: Opioid errors are a leading cause of patient harm and adversely impact palliative care inpatients’ pain and symptom management. Yet, the factors contributing to opioid errors in palliative care are poorly understood. Identifying and better understanding the individual and system factors contributing to these errors is required to inform targeted strategies. Objectives: To explore palliative care clinicians’ perceptions of the factors contributing to opioid errors in Australian inpatient palliative care services. Design: A qualitative study using focus groups or semi-structured interviews. Settings: Three specialist palliative care inpatient services in New South Wales, Australia. Participants: Inpatient palliative care clinicians who are involved with, and/or have oversight of, the services’ opioid delivery or quality and safety processes. Methods: Deductive thematic content analysis of the qualitative data. The Yorkshire Contributory Factors Framework was applied to identify error-contributing factors. Findings: A total of 58 clinicians participated in eight focus groups and 20 semi-structured interviews. Nine key error contributory factor domains were identified, including: active failures; task characteristics of opioid preparation; clinician inexperience; sub-optimal skill mix; gaps in support from central functions; the drug preparation environment; and sub-optimal clinical communication. Conclusion: This study identified multiple system-level factors contributing to opioid errors in inpatient palliative care services. Any quality and safety initiatives targeting safe opioid delivery in specialist palliative care services needs to consider the full range of contributing factors, from individual to systems/latent factors, which promote error-causing conditions.

Gegenstand des Forschungsprojekts "Living Loving Dying" war es, die Versorgung am Lebensende und die Trauerbewältigung für Sterbende und ihre Angehörigen in ländlichen Regionen zu verbessern. Teilnehmende waren Personen, die Sterbende begleitet hatten und in Gebieten mit geringer Einwohner*innenzahl und in relativer geografischer Isolation lebten. Die Datenerhebung zu derart sensitiven Themen mit Menschen, die immer noch von Tod und Trauer betroffen waren, erforderte die Nutzung entsprechen sensitiver Methoden. Wichtig ist auch, dass diese Menschen sicher sein können, dass ihre Stimme gehört wird und dass sie zu positiven Veränderungen für andere beitragen können. Vor diesem Hintergrund haben wir sie gebeten, als Community-Partner*innen an der Studie teilzunehmen, für die wir ein deskriptives qualitatives Design gewählt und partizipative Elemente in die Datenerhebung mittels teilstrukturierter Interviews einbezogen haben. Dabei war die nicht-hierarchische Beziehung zwischen uns Forschenden und den Partner*innen von herausragender Bedeutung gerade angesichts dieser vulnerablen Gruppe. In dem Beitrag reflektieren wird die pragmatischen und ethischen Erwägungen des Methodeneinsatzes für die ländliche Lebensende-Forschung., The "Living Loving Dying" research project aimed to improve end of life and bereavement care for people caring and dying in rural areas. The data were provided by people who had experienced caring for someone until his/her death, while living in an area of low population and geographical isolation. Undertaking data collection on such a sensitive topic, from people still vulnerable from the impacts of death and grief, requires the use of particularly sensitive research methods. It is also important that participants feel their voices are heard and that they are contributing to positive change for others. In view of this we positioned people to participate as community-partners and utilized a descriptive qualitative design with participatory elements in the data collection method of in-depth, semi structured interviewing. The non-hierarchical relationship between researchers and community-partners were key influences for using participatory elements in this research with a vulnerable population. In this article we reflect on the pragmatic and ethical considerations that the application of this method has for rural end-of-life research.

Denkt man an Palliative Care und hört den Satz "Es ist noch viel zu tun", kommen einem sofort die Einrichtungen in den Sinn, die (immer noch) fehlen, die Überzeugungsarbeit, die (immer noch) zu leisten ist, und die finanziellen Mittel, die nach wie vor zu gering sind...

Kranke und alte Menschen sind in besondere Weise mit ihrem Lebensende konfrontiert. Der Autor beschreibt die verschiedenen Ansätze, wie der Prozess hin zum Sterben erlebt und verarbeitet wird, und zeigt dies an dem Beispiel von Johann Sebastian Bach.

Background: Knowing the difficulties in the application of palliative care would allow us to propose improvement strategies. The objective was to determine the metric properties of the Palliative Care Difficulties Scale (PCDS) translated and adapted to Spanish. Methods: An instrumental validation study was designed in a regional hospital and primary care centers of a health district. 148 health professionals participated. Sociodemographic and professional variables were collected by a questionnaire about palliative care training and experience, as well as items from the PCDS. The statistical analysis was done with the SPSS 19.0 program. Results: It was verified the comprehension of the translation and back translation of the questionnaire, in a pilot study with 30 professionals. Subsequently, in the survey of 118 professionals, an endorsement frequency of not more than 51% was found for content validity. As for the construct validity, the calculation of the sample adequacy, using the Kaiser-Meyer-Olkin index obtained a value of 0.76. The principal component factor analysis reached a total variance of 73.88% with all items. The correlation of factors ranged from 0.2 to 0.3; so the Varimax rotation was established. The correlation between the items of each factor was higher than 0.6. For the reliability analysis, the internal consistency obtained a Cronbach alpha value of 0.87. In the test-retest reliability analysis, Spearman’s Rho correlation for the scale was 0.81. Conclusions: It was obtained an instrument translated and culturally adapted to Spanish, with adequate validity and reliability to measure difficulties in palliative care., Fundamentos: Conocer las dificultades en la aplicación de cuidados paliativos, permitiría proponer estrategias de mejora. El objetivo del estudio fue validar la traducción de la “Escala de Dificultades en Cuidados Paliativos (PCDS)”, traducida y adaptada al español. Métodos: Se realizó un estudio de validación instrumental, en un hospital comarcal y centros de atención primaria de un distrito sanitario. Participaron 148 profesionales sanitarios. Mediante una encuesta, recogimos variables sociodemográficas y profesionales sobre la formación y experiencia en cuidados paliativos, así como los ítems del cuestionario PCDS. El análisis estadístico se hizo con el programa SPSS 19.0. Resultados: Comprobamos la comprensión de la traducción y retrotraducción del cuestionario en un estudio piloto con 30 profesionales. Posteriormente, encuestamos a 118 profesionales, encontrando una frecuencia de endose no superior al 51% para la validez de contenido. En cuanto a la validez de constructo, el cálculo de la adecuación muestral, mediante el índice de Kaiser-Meyer- Olkin obtuvo un valor de 0,76. En el análisis factorial por componentes principales encontramos una varianza total explicada del 73,88% con todos los ítems. La correlación de factores osciló entre 0,2 y 0,3, así que se estableció la rotación Varimax. La correlación entre los ítems de cada factor fue superior a 0,6. Para el análisis de fiabilidad, la consistencia interna obtuvo un valor alfa de Cronbach de 0,87. En el análisis de fiabilidad test-retest, la correlación Rho de Spearman para la escala fue de 0,81. Conclusiones: Disponemos de un instrumento traducido y adaptado culturalmente al español, con validez y fiabilidad adecuadas para la medición de dificultades en cuidados paliativos.

Background: Emergency services are specialized in population’s severe illness care. However, the increasing trend of chronic patients which in some cases require of palliative care, has lead to a higher influx of this type of patients in emergency services, thus growing the rate of deaths consequently. How is this fact perceived by the health professionals and which strategies they count on to face patients’ death? The aim of this work was to deeply review the perception and the strategies to face patients’ death in the end-of-life (EOL) at emergency services. Methodology: Systematic review of qualitative studies was made according to PRISMA statements. Research was performed in the following bibliographic databases: Pubmed, Web of Science, Scopus, EMBASE, CINAHL, VHL Regional portal, Cuiden, COCHRANE LIBRARY and JBI. Inclusion criteria were as follows: Physicians and Nurses with at least one year of working experience as health professionals, Pediatric care excluded. Methodological quality, data extraction and its inclusion process was made in agreement with the tools described in JBI. Results: The extracted findings were structured and added in 4 thematic categories: 1) Priority of professional attention according to the causes and origin of patient’s death; 2) Environmental barriers in the department hindering attention at the EOL; 3) professionals’ emotions dealing with patients’ death; 4) Professional strategies dealing with patient’ death. Conclusion: Health care professionals (Physicians and nurses) face more efficiently patients’ death when is caused by a critic disease than when is caused by chronic/ palliative diseases. Environment and the lack of training have been identified as factors that difficult end-of-life attention in emergency services., Fundamentos: Los servicios de urgencias están especializados en la atención de afecciones agudo/críticas de la población, sin embargo, el aumento considerable de enfermedades crónicas que en algunos casos requieren cuidados paliativos ha generado una mayor afluencia de estos pacientes a los departamentos de emergencias (DE), produciéndose en ocasiones, la muerte en los mismos. ¿Cómo perciben y qué tipo de estrategias poseen los profesionales ante el fallecimiento de un paciente en éste servicio? El objetivo de este trabajo fue analizar la percepción y las estrategias de afrontamiento de los profesionales en la atención al final de la vida (FV) en los DE. Métodos: Revisión sistemática de estudios cualitativos cumpliendo los criterios de la Declaración PRISMA. La búsqueda se realizó en las bases bibliográficas: Pubmed, Web of Science, Scopus, EMBASE, CINAHL, VHL Regional Portal, Cuiden, COCHRANE LIBRARY y JBI. Los criterios de inclusión fueron: profesionales de medicina/ enfermería, con más de un año de experiencia. No se incluyó la atención pediátrica. La calidad metodológica, la extracción de los datos y el proceso de síntesis se realizó mediante las herramientas de la guía para revisiones sistemáticas cualitativas del JBI. Resultados: Se estructuró los hallazgos extraídos en 4 categorías temáticas: 1) Prioridad de atención profesional según las causas/origen de la muerte; 2) Barreras ambientales en los DE que dificultan la atención al FV; 3) Emociones del profesional frente a la muerte de los pacientes; 4) Estrategias profesionales relacionadas con la muerte del paciente. Conclusiones: Los profesionales sanitarios (médicos/ enfermeras) afrontan de forma más eficaz los fallecimientos ocasionados por causas de origen aguda/críticas, frente las presentadas por causas crónico/paliativas. Las características del entorno y la falta de formación para el afrontamiento profesional se destacan como factores que dificultan la atención al FV en estos departamentos.

On top of all competences that a healthcare professional should have achieved during his/her training, palliative care is a growing need for patients from different age groups affected with cancer, cardiovascular diseases, degenerative conditions, and the like. Palliative care is a huge challenge for healthcare services, because this requires adequate teamwork, human resources and adequately functioning systems. Management, public health, service integration, ethical dilemmas, and ethical issues are the main barriers that physicians taking care of terminally ill patients must deal with. One of our main strategies for tackling this situation is to consolidate educational programs, so healthcare professionals may become empowered with knowledge; so, they may disclose the need for humanizing healthcare of terminally ill subjects., Los cuidados paliativos, además de ser parte de las competencias que debería haber adquirido un profesional de la salud durante su formación, son una necesidad en crecimiento para pacientes de diferentes grupos etarios, ya sea para enfermedades oncológicas, cardiovasculares, degenerativas, entre otras. Se consideran un reto para los servicios de salud por ser cuidados complejos, que requieren de trabajo en equipo, recursos humanos y sistemas que funcionen adecuadamente. Los aspectos de gestión, salud pública, integración de servicios, dilemas éticos y aspectos legales en transición son las principales barreras a las que se enfrentan los profesionales que atienden personas con enfermedad terminal. Una de las principales armas que tenemos es consolidar programas educativos para empoderar con conocimiento a los profesionales y, de esta forma, que hagan notar la necesidad del manejo humano de la salud de personas con enfermedades terminales.

Background: Hydromorphone is a standard opioid analgesic for cancer pain that, prior to this study, was not approved in Japan, where options for opioid switching are limited. We aimed to investigate the efficacy and safety of hydromorphone (DS-7113b) immediate-release tablets in opioid-naïve cancer patients with moderate to severe cancer pain., Methods: Multicenter, active-controlled, randomized, double-blind, parallel-group, non-inferiority study of 183 cancer patients over 20 years of age at 50 clinical sites in Japan. Hydromorphone tablets or oxycodone hydrochloride powder was orally administered four times daily for 5 days. The initial doses of hydromorphone and oxycodone hydrochloride were 4 mg/day and 10 mg/day, respectively, and adjusted as necessary. Efficacy was evaluated as the intergroup difference (95% confidence interval [CI]) of the least squares mean by analysis of covariance, using the baseline visual analog scale (VAS) as a covariate for change in VAS score at treatment completion/discontinuation in the full analysis set., Results: Non-inferiority of hydromorphone versus oxycodone was confirmed, with an intergroup difference (95% CI) in the least squares mean of −3.4 mm (−9.8 to 3.1 mm) for change in VAS scores, which was below the upper limit of the 95% CI at 10 mm, the non-inferiority limit determined during study planning. Adverse events occurred in 83.0% (73/88) of patients in the hydromorphone group and 77.4% (65/84) in the oxycodone group. The most frequently observed adverse events were somnolence, constipation, vomiting and nausea. Conclusions: The efficacy and safety of hydromorphone tablets are equivalent to those of oxycodone immediate-release powder.

Background: Symptoms of terminal cancer have previously been reported as undertreated. The aim of this study was to assess the use of palliative medications before death from prostate cancer. Methods: This Swedish register study included men who died from 2009 to 2012 with prostate cancer as the underlying cause of death. We assessed the proportion who collected a prescription of androgen deprivation therapy, non-steroidal anti-inflammatory drugs, paracetamol, opioids, glucocorticoids, antidepressants, anxiolytics and sedative-hypnotics and the differences in treatment related to age, time since diagnosis, educational level, close relatives and comorbidities. Data were collected from 3 years before death from prostate cancer. Results: We included 8326 men. The proportion who received opioids increased from 30% to 72% during the last year of life, and 67% received a strong opioid at the time of death. Antidepressants increased from 13% to 22%, anxiolytics from 9% to 27% and sedative-hypnotics from 21% to 33%. Men without close relatives and older men had lower probability to receive opioids (odds ratio [OR]: 0.56, 95% confidence interval [CI]: 0.47-0.66 for >85 years versus <70 years) and (OR 0.78, 95% CI: 0.66-0.92 for unmarried without children versus married with children). Conclusion: Our results represent robust epidemiological data from Sweden for comparison of palliative care quality between countries. The findings indicate that men without close relatives and older men are disadvantaged with respect to the treatment of cancer pain and need closer attention from health care providers and highlight the importance to identify psychological distress in terminal prostate cancer.

Die vorliegende Studie untersucht den Diskurs zu Sterben und gutem Sterben in Österreich anhand der parlamentarischen Enquete-Kommission "Würde am Ende des Lebens" (2014-2015) mittels Adaptierung des Forschungsansatzes der Wissenssoziologischen Diskursanalyse. Die Interpretation von schriftlichen Stellungnahmen, Sitzungsprotokollen und Zeitungsartikeln zeigt, dass Sterben vornehmlich als Prozess konstruiert wird, der alte und kranke Menschen betrifft. Diese werden als hilfebedürftig gedeutet, was umfassende Betreuung und Pflege für ein gutes Sterben notwendig erscheinen lässt. Das gute Sterben zeichnet sich durch soziale und professionelle Einbettung, ausreichende Schmerz- und Symptomtherapie, Selbstbestimmung, Kommunikation und Akzeptanz aus. Ein ruhiger und kontrollierter Sterbeprozess wird angestrebt. Obwohl hinsichtlich der Frage nach der Legitimität von assistiertem Suizid und Tötung auf Verlangen polarisierende Haltungen im Diskurs hervortreten, zeigt sich die häufig implizite Forderung nach weiterer Institutionalisierung des Sterbens als Gemeinsamkeit. Gesellschaft und Politik werden als Verantwortliche für den notwendigen Ausbau von Palliativ- und Hospizversorgung und weiterer Ressourcen identifiziert., This study investigates the discourse of dying and good dying in Austria by adapting the Sociology of Knowledge Approach to Discourse to analyze the parliamentary Enquete-Commission "Dignity at the End of Life" (2014-2015). The interpretation of written opinions, minutes, and newspaper articles shows that dying is predominantly constructed as a process concerning old and ill people. These are identified as in need of help; thus, comprehensive support and care are necessary to facilitate a good death. The good death is characterized by social and professional embeddedness, sufficient pain- and symptom-management, self-determination as well as communication and acceptance. The underlying goal is a calm and controlled process of dying. Although there are polarized views on assisted suicide and killing on request, there is a common demand for a higher degree of institutionalization of support and care at the end of life. Society and politics are held responsible to expand the current palliative care and hospice system and provide further necessary resources for end of life care.

Objective: To characterize the scientific production disseminated in online journals on the elderly person undergoing palliative care. Method: This is a bibliometric study composed of 46 papers published in the databases LILACS, MEDLINE and IBECS, and in the digital libraries SciELO and COCHRANE, in the period from 2004 to 2014. Results: A concentration of titles in specialized journals in palliative care has been identified, with origin of Brazil, United States and United Kingdom, in Qualis A1, A2 and B1. The areas of Nursing and Medicine have obtained a greater amount of publications. There was a predominance of authors with the titration of PhD. As for the focus of the disease, 90% of the studies were related to cancer. Conclusion: The publications about the investigated issue have shown a little expressive amount, taking into account the surveyed period. It is suggested to perform new studies using bibliometric research as investigation method, so that other indicators can emerge and stimulate the expansion of knowledge about the theme.

Objective: Investigating the understanding of medical residents about palliative care and mourning. Method: an exploratory study with a qualitative approach, conducted in august 2013 with 18 residents of a university hospital in the city of João Pessoa / Paraiba / Brazil. To enable the collection of data, was used an instrument containing relevant questions to the study objective. The analysis was performed using the Technique of Content Analysis. Results: From the analysis of the empirical material, two categories emerged: "Care that can provide relief of pain and suffering with an emphasis on the quality of life and promotion of dignity" and "Mourning is the feeling of loss on the death of a loved dear". Conclusion: It is considerable that the study demonstrated the understanding of resident physicians about palliative care and mourning, and support further researches on the theme.

Der nachfolgende Beitrag diskutiert die Herausforderungen des Einbezugs von betroffenen Kindern und Jugendlichen in die qualitative Forschung zum Thema lebenslimitierende Erkrankungen insbesondere unter dem Blickwinkel der methodischen Gestaltung dieses Einbezugs. Hierfür wird zunächst die Lebens- und Versorgungssituation lebenslimitierend erkrankter Kinder und Jugendlicher dargestellt. Anschließend werden Ergebnisse aus empirischen Studien erläutert und im Hinblick auf die Herausforderungen einer Beteiligung erkrankter Kinder, Jugendlicher und ihrer Familien diskutiert. Als Ergebnis dieser Analyse erfolgt eine Zusammenfassung zentraler Diskussionsstränge. Zudem werden Strategien für eine sensible Integration von schwerkranken Kindern und Jugendlichen abgeleitet und auf der Basis bestehender Erfahrungen aus qualitativen Studien konkretisiert. Vor dem Hintergrund einer laufenden Studie mit lebenslimitierend erkrankten Kindern liefert der Beitrag Anregungen für die methodische Planung, Durchführung und Evaluation von entsprechenden Forschungsvorhaben. (Autorenreferat), In this article, we discuss how to incorporate the perspectives of children and adolescents with life-limiting conditions into qualitative research studies by actively involving these children; e.g., via qualitative interviews. First, an overview of living conditions and homecare of these children and adolescents is given. Next, results from empirical studies are discussed with respect to challenges connected to the active participation of these children and adolescents and their families in qualitative research. This discussion is then summarized with a focus on the central threads. Against this background, strategies for a sensitive integration of life-limiting children and adolescents into qualitative research are derived. The thesis of this article is informed by an ongoing qualitative study with children and adolescents with life-limiting conditions that focus on their perceptions and points of view. We offer suggestions for planning, conducting, and evaluating research projects with children and adolescents not only with life-limiting conditions. (author's abstract)

Objective: To realize the vision of a multidisciplinary team before the child with leukemia in palliative care. Methods: This study is a qualitative approach, outlined by the case study method. The study subjects were 17 health professionals who provided direct assistance to children with leukemia in palliative care. Results: The results showed that, for practitioners, palliative care involves suffering by the family and the professional, arouses many emotions in the team. And that humanized care should be done seeking the host of both the patient and family comfort, relief of pain and symptoms, support and assistance to the family. Conclusion: It is concluded that the health professional creates bond with the child in palliative care, and also with his family, which is beneficial for the treatment of the child.

Objective: The objective was to investigate the ethical observances used by nurses assisting the patient without possibilities of cure. Methods: Exploratory research, qualitative in nature, performed with 28 nurses of a public hospital, located in the city of João Pessoa/PB. The data were collected through a questionnaire, from August to October 2012 and subjected to content analysis technique. Results: The categories identified were: Palliative Care: principles of Bioethics to the patient without possibilities of cure and privacy and professional secrecy under the palliative care. Such categories indicated that the professionals are valuing the principles of Bioethics, as well as the privacy and the professional secrecy, using them as a strategy to assist the care to the patient without possibilities of cure. Conclusion: This study is expected to subsidize new investigations, because they are still incipient the research addressing bioethics in patient assistance in palliative care.

Objectives: To identify the knowledge of nursing students in relation to palliative care and discuss the differential of this professional to the quality of care to the customer cancer at an advanced stage. Method: This is a descriptive study with qualitative approach. The study setting was a private university located in the city of Rio de Janeiro. The subjects were sixteen nursing students who were duly enrolled in the 9th and 10th periods, in the period of data collection. Results: Two emerged categories: Knowledge of academics about palliative care and the difficulties of dealing with death; and the Role of the Nurse in palliative care. Conclusion: We believe that good practice should be the result of dedication, the pursuit of scientific knowledge, and especially, the strengthening of the human being that exists in every professional. This feature is extremely important for the implementation of sentiment in care.

Objective: To investigate whether professionals of the Home Care Service value communication in the scope of palliative care, when assisting patients without possibility of healing, and to ascertain the facilitating communication strategies used by these professionals for promoting palliative care. Methods: This is an exploratory research, with qualitative nature, conducted with 22 professionals of the Home Care Service situated in the city of João Pessoa/PB. Data were analyzed by means of the content analysis technique. Results: The analysis gave rise to two categories: "Valorization of communication in the relationship between health professionals and patients under palliative care" and "Communication strategies used by professionals for promoting palliative care in the Home Care Service". Conclusion: It can be concluded that communication is configured as an essential component of patient care and is extremely important for promoting palliative care.

21 p., ill., Qu’entend-on par des soins de fin de vie « appropriés » dans notre pays ? Comment se fait-il que certaines personnes reçoivent des soins « inappropriés » et comment peut-on l’éviter ? En collaboration avec des chercheurs de l’UCL et de l’UAntwerpen, le Centre fédéral d’Expertise des Soins de santé (KCE) a analysé les publications belges et a lancé une vaste étude (dont une enquête) impliquant des prestataires de soins, des patients, des proches, et des bénévoles. Il en ressort que les soins sont considérés comme appropriés quand ils sont en accord avec ce que le patient trouve important, et qu’une bonne manière d’éviter de recevoir des soins inappropriés est d’exprimer à l’avance ses souhaits et préférences pour la fin de vie. Les soignants doivent (pouvoir) dégager du temps pour en parler avec leurs patients : qu’attendent-ils encore de la vie ? Quelles sont leurs priorités ? Quant à la société dans son ensemble, elle doit ré-apprivoiser la question taboue de la fin de vie, afin de rendre ce sujet abordable entre le patient, ses proches et ses soignants., 1. INTRODUCTION 4 -- 1.1. CONTEXTE . 4 -- 2. PORTEE DE L’ETUDE ET METHODOLOGIE . 4 -- 2.1. QU’AVONS-NOUS ETUDIE ? 4 -- 2.2. COMMENT AVONS-NOUS PROCEDE ? 4 -- 2.2.1. Étude de la littérature 5 -- 2.2.2. Enquête en ligne, interviews et groupes de discussion . 5 -- 2.2.3. Concertation avec les stakeholders et validation 5 -- 3. QU’ENTEND-ON PAR DES SOINS DE FIN DE VIE (IN)APPROPRIES ? 6 -- 3.1. DE NOMBREUX TERMES, DE NOMBREUX SENS . 6 -- 3.2. LA PREVALENCE DES SOINS INAPPROPRIES 6 -- 4. QUELS SONT LES FACTEURS QUI FAVORISENT DES SOINS (IN)APPROPRIES ? 7 -- 4.1. LA SOCIETE 7 -- 4.2. L’ORGANISATION DES SOINS 8 -- 4.3. LES PRESTATAIRES DE SOINS 9 -- 4.4. LES PROCHES . 9 -- 4.5. LE PATIENT . 10 -- 4.5.1. Attentes irréalistes et méconnaissance des soins palliatifs 10 -- 4.5.2. Réticences 10 -- 4.5.3. Le type de pathologie 10 -- 4.5.4. Autres facteurs . 10 -- 5. COMMENT FAVORISER LES SOINS APPROPRIES ? 11 -- 5.1. LA SOCIETE (ET LES PATIENTS) 11 -- 5.2. L’ORGANISATION DES SOINS. 12 -- 5.3. LES PRESTATAIRES DE SOINS . 13 -- 6. CONCLUSION 15

203 p., ill., SCIENTIFIC REPORT .9 -- 1 INTRODUCTION 9 -- 1.1 GENERAL RESEARCH AIM 9 -- 1.2 POLICY RELEVANCE AND TARGET POPULATION .10 -- 1.3 RESEARCH QUESTIONS .10 -- 2 METHODOLOGY 11 -- 2.1 BUILDING UPON PREVIOUS WORK .11 -- 2.2 BELGIAN LITERATURE REVIEW .11 -- 2.2.1 Orientation of the study .11 -- 2.2.2 Search sources .11 -- 2.2.3 Search strategy .12 -- 2.2.4 In- and exclusion criteria and process 13 -- 2.2.5 Methodological assessment 13 -- 2.2.6 Data extraction 13 -- 2.2.7 Data synthesis 13 -- 2.3 ONLINE QUESTIONNAIRE 14 -- 2.3.1 Orientation of the study .14 -- 2.3.2 The questionnaire 14 -- 2.3.4 Data analysis 16 -- 2.4 QUALITATIVE FOLLOW-UP STUDY 17 -- 2.4.1 Orientation of the study .17 -- 2.4.2 Procedure .17 -- 2.4.3 Data analysis 18 -- 2.5 VALIDATION PROCEDURES 18 -- 2.6 ETHICAL APPROVAL 19 -- 2.7 OUTLINE OF THE REPORT .19 -- 3 BELGIAN LITERATURE SEARCH 19 -- 3.1 RESULTS 19 -- 3.1.1 Search results 19 -- 3.1.2 Terminology & definitions .20 -- 3.1.3 Prevalence 28 -- 3.1.4 Determinants and contributing factors 30 -- 3.1.5 Consequences 34 -- 3.1.6 Interventions 34 -- 3.2 CONCLUSIONS FROM THE LITERATURE REVIEW 36 -- 4.1 PRECEDING NOTES 38 -- 4.2 DESCRIPTION OF THE RESPONDENTS 41 -- 4.2.1 Description of the total eligible sample .41 -- 4.2.2 Sample descriptives by the perspective respondents adopted.42 -- 4.2.3 More information about respondents with a background in care .44 -- 4.3 CIRCUMSTANCES OF END OF LIFE CARE 44 -- 4.4 OPINIONS ABOUT AND ATTITUDES TOWARDS END OF LIFE CARE .46 -- 4.4.1 Who is responsible for inappropriate care? 46 -- 4.4.2 Opinions about and attitudes towards end of life care 49 -- 4.4.3 Balanced involvement in end of life care? 51 -- 4.4.4 Advance care planning regarding end of life care 53 -- 4.4.5 Preferences in decision making about end of life care .57 -- 5 QUALITATIVE ANALYSES 57 -- 5.1 CHAPTER OUTLINE AND AVAILABLE DATA 57 -- 5.1.1 Chapter outline: Three research questions .57 -- 5.1.2 Data and respondents 57 -- 5.2 RESEARCH QUESTION 1: DEFINITION OF

21 p., ill., Wat wordt in ons land beschouwd als passende zorg in de laatste levensfase? Hoe komt het dat sommige mensen deze zorg niet krijgen, en hoe kan dit worden voorkomen? Het Federaal Kenniscentrum voor de Gezondheidszorg (KCE) doorzocht de Belgische publicaties en organiseerde samen met het onderzoeksteam van UAntwerpen en de UCL een grootschalig onderzoek (waaronder een enquête) bij zorgverleners, patiënten, familieleden en vrijwilligers. Passende zorg blijkt zorg te zijn die tegemoet komt aan wat een patiënt belangrijk vindt. Het tijdig vastleggen van wensen en voorkeuren in een voorafgaande zorgplanning is een zeer goede manier om niet passende zorg bij het levenseinde te voorkomen. Daarnaast moeten zorgverleners vooral tijd krijgen en maken voor gesprekken met hun patiënt. Wat verwacht deze nog van het leven? Waar liggen de prioriteiten? En de maatschappij moet opnieuw leren om te gaan met het levenseinde, zodat dit gemakkelijker bespreekbaar wordt tussen de patiënt en zijn naasten en zorgverleners., 1. INLEIDING 4 -- 1.1. ACHTERGROND 4 -- 2. SCOPE VAN DE STUDIE EN METHODE .. 4 -- 2.1. WAT HEBBEN WE ONDERZOCHT? 4 -- 2.2. HOE GINGEN WE TE WERK? 4 -- 2.2.1. Onderzoek van de literatuur 4 -- 2.2.2. Onderzoek met online enquête, interviews en focusgroepen 5 -- 2.2.3. Stakeholderoverleg en validatie 5 -- 3. WAT IS (NIET) PASSENDE ZORG BIJ HET LEVENSEINDE? 6 -- 3.1. VELE TERMEN EN BETEKENISSEN VOOR NIET PASSENDE ZORG 6 -- 3.2. PREVALENTIE VAN NIET PASSENDE ZORG 7 -- 4. WAT WERKT (NIET) PASSENDE ZORG IN DE HAND? 7 -- 4.1. MAATSCHAPPIJ 7 -- 4.2. ZORGORGANISATIE. 8 -- 4.3. ZORGVERLENERS 9 -- 4.4. FAMILIELEDEN 10 -- 4.5. PATIËNT 10 -- 4.5.1. Onrealistische verwachtingen en onwetendheid over palliatieve zorg 10 -- 4.5.2. Terughoudendheid 10 -- 4.5.3. Soort van aandoening 11 -- 4.5.4. Andere factoren 11 -- 5. HOE PASSENDE ZORG BEVORDEREN? 11 -- 5.1. MAATSCHAPPIJ (EN PATIËNTEN) 11 -- 5.2. ZORGORGANISATIE 12 -- 5.3. ZORGVERLENERS 13 -- 6. CONCLUSIE. 15

The study of oncology in medical schools is very important because whatever a doctor will be in the future, at some point he will have to deal with oncologic patients. Patients with incurable diseases in general and with tumors in particular constitute the majority of patients who need palliative care. Features of this branch of medicine require special training, therefore Palliative Medicine is taught as a separate course of higher medical education program to VI year students of the Medicine Faculty. It is important to draw the students’ attention to the study of the basic statements and principles of palliative medicine in the treatment of oncologic patients and to form a clear understanding of the need for palliative care and the ability to determine its scope in patients in case of the impossibility of definitive treatment.

Partant de son expérience personnelle d’une dizaine d’années, en qualité d’infirmière pédiatrique au sein du service de néonatalogie intensive des cliniques universitaires Saint-Luc à Bruxelles, l’auteur du présent article a conçu le projet de mettre sur pied un groupe de travail visant à réfléchir, voire à remettre en question les pratiques infirmières de prise en charge des situations de fin de vie des grands prématurés. Cette réflexion, basée sur l’expérience des intervenants, a permis de développer des outils mieux adaptés aux besoins et aux attentes de l’enfant en fin de vie et de ses proches. Grâce à l’implication de toute l’équipe soignante, cette réflexion a débouché sur la mise en place d’un projet thérapeutique qui est désormais appliqué de façon systématique, [A nurse's view on accompanying babies through end-of-life care at a neonatal intensive care unit] With 10 years of working as a paediatric nurse in the neonatal intensive care unit of Saint-Luc University Hospital in Brussels, the author has established a multidisciplinary working group of colleagues to reflect on the unique challenges of palliative care situations among the very premature and sick newborns, and to seek improvements to caregivers’ practices. The group's work, drawing on the empirical experience of its members, has driven the development of tools and procedures that are more adapted to the requirements of the infant at its end of life and of its parents. Thanks to broad support for this effort across the entire caregiver team, it has been possible to introduce a therapeutic project which is now systematically applied.

Background: Palliative care expert teams in hospitals have positive effects on the quality of life and satisfaction with care of patients with advanced disease. Involvement of these teams in medical care is also associated with substantial cost savings. In the Netherlands, professional standards state that each hospital should have a palliative care team by 2017. We studied the number of hospitals that have a palliative care team and the characteristics of these teams. Methods: In April 2015, questionnaires were mailed to key palliative care professionals in all general, teaching and academic hospitals in the Netherlands. Out of 92 hospitals, 74 responded (80 %). Results: Seventy-seven percent of all participating hospitals had a palliative care team. Other services, such as outpatient clinics (22 %), palliative care inpatient units (7 %), and palliative day care facilities (4 %) were relatively scarce. The mean number of disciplines that were represented in the teams was 6,5. The most common disciplines were nurses (72 %) and nurse practitioners (54 %), physicians specialized in internal medicine (90 %) or anaesthesiology (75 %), and spiritual caregivers (65 %). In most cases, the physicians did not have labeled hours available for their work as palliative care consultant, whereas nurses and nurse practitioners did. Most teams (77 %) were only available during office hours. Twenty-six percent of the teams could not only be consulted by healthcare professionals but also by patients or relatives. The annual number of consultations for inpatients per year ranged from 2 to 680 (median: 77). On average, teams were consulted for 0.6 % of all patients admitted to the hospitals. Conclusion: The number of Dutch hospitals with a palliative care team is rapidly increasing. There are substantial differences between teams regarding the disciplines represented in the teams, the procedures and the number of consultations. The development of quality standards and adequate staffing

Background: Evidence indicates that hypodermoclysis is as safe and effective as intravenous rehydration in the treatment of the symptomatology produced by mild to moderate dehydration in patients for whom oral route administration is not possible. However, the knowledge about the use of the subcutaneous hydration and its correlates is still limited. Aim: To explore the perceptions, attitudes and opinions of health professionals in palliative care on the administration of subcutaneous hydration. Design: This is a qualitative focus group study with health professionals of palliative care. Four focus groups were carried out until data saturation. A qualitative content analysis was performed. Setting/participants: A total of 37 participants, physicians and nurses, were recruited from different services of palliative care in Spain. Results: In all, 856 meaning units were identified, from which 56 categories were extracted and grouped into 22 sub-themes, which were distributed among four themes: ‘factors which influence the hydration decision’, ‘factors related to the choice of the subcutaneous route for hydration’, ‘the subcutaneous hydration procedure’ and ‘performance guidelines and/or protocols’. Conclusions: Variables which most often influence the use of subcutaneous route to hydration are those that are linked to the characteristics of the patient, the team and the family, and other like the context and professionals’ subjective perceptions about this medical practice.

Introduction: Palliative care is defined as the total active care of patients whose disease is not responsive to curative treatment, therefore this study aims to identify the level of attitudes and knowledge in palliative care hospital with high level of complexity. Materials and methods: Observational, cross-sectional method; using a validated survey. It was self-supplied via web. Per­spective practice, knowledge degree, comfort level, perspective relevance and appropriateness of the respondents (doctors) in palliative care were assessed. General characteristics, reliability and scores per item and domain were described. Results: 145 physicians, mostly males, were surveyed, most of them with 0-5 years of professional practice and working in the emergency department (51.03 %). Appropriate reliability coefficients were found; overall level of attitudes and knowledge of palliative care was 59.09 points out of 100; lowest score domains were the prospects suitabil­ity (40.73 points) and practice (47.04 points). Conclusions: The survey showed moderate to low degrees in attitudes and knowledge, the weakest points were practical perspective and expertise in decision-making. Training aimed at establishing prognosis and improving decision making as to referring to palliative care service must be carried out. Survey results of inspection after train­ing will allow an assessment of the improvements in knowledge and attitudes of palliative care., Introdução: O cuidado paliativo define-se como o cuidado total ativo dos pacientes cuja doença não responde a tratamento curativo; o presente estudo pretende identificar o nível de atitudes e conhecimentos em cuidados paliativos de um hospital de alto nível de complexidade. Materiais e métodos: estudo observacional, de corte transversal; por meio de um inquérito validado, auto -administrado através da web; avaliou-se a Perspectiva prática; Grau de conhecimento; Grau de comodidade; Perspectiva de pertinência e Perspectiva de idoneidade dos respondentes (médicos) em cuidados paliativos; descreveram-se as características gerais, o grau de fiabilidade e as pontuações por item e domínio. Resultados: inquiriram-se 145 médicos, a maioria de sexo masculino; com 0 a 5 anos de exercício profissional e pertencentes à área de emergências (51,03 %), encontra­ram-se apropriados coeficientes de confiabilidade; o nível global de atitudes e conhecimentos de cuidados paliativos foi de 59,09 pontos de 100 possíveis; os domínios de menor pontuação foram as Perspectivas de idoneidade (40,73 pontos) e prática (47,04 pontos). Conclusões: o inquérito mostrou um nível moderado a baixo em atitudes e conhecimentos, os pontos mais fracos foram a perspectiva prática e a idoneidade na tomada de decisões, devem realizar-se capacitações dirigidas a estabelecer prognósticos e melhorar a tomada de decisão de remissão ao serviço de cuidados paliativos; resultados de inquéritos de controle posterior às capacitações permitiram avaliar, as melhoras nos conhecimentos e atitudes dos cuidados paliativos., Introducción: El cuidado paliativo se define como el cuidado total activo de los pacientes cuya enfermedad no responde a tratamiento curativo; de esta manera, el presente estudio pretende identificar el nivel de actitudes y conocimientos en cuidados paliativos de un hospital de alto nivel de complejidad. Materiales y métodos: Estudio observacional, de corte transversal, mediante una encuesta validada, auto-suministrada vía web. Se evaluó la perspectiva práctica, grado de conocimiento, grado de comodidad, perspectiva de pertinencia y perspectiva de idoneidad de los encuestados (médicos) en cuidados paliativos; se describieron las características generales, el grado de fiabilidad y los puntajes por ítem y dominio. Resultados: Se encuestaron 145 médicos, la mayoría de sexo masculino, con 0 a 5 años de ejercicio profesional y pertenecientes al área de urgencias (51,03 %), se encontraron apropiados coeficientes de confiabilidad. El nivel global de actitudes y conocimientos de cuidados paliativos fue de 59,09 puntos de 100 posibles, los dominios de menor puntaje fueron las Perspectivas de idoneidad (40,73 puntos) y práctica (47,04 puntos). Conclusiones: La encuesta mostró un nivel de moderado a bajo en actitudes y conocimientos, los puntos más débiles fueron la perspectiva práctica y la idoneidad en la toma de decisiones, deben realizarse capacitaciones dirigidas a establecer pronósticos y mejorar la toma de decisión de remi­sión al servicio de cuidados paliativos. Los resultados de encuestas de control, posteriores a las capacitaciones, permitirán evaluar las mejoras en los conocimientos y actitudes de los cuidados paliativos.