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PURPOSE: As part of the German interdisciplinary S3-guideline "Diagnosis, Treatment and Followup of Renal Cell Carcinoma", this article aimes to provide guidance regarding the use of supportive therapy and complementary medicine in patients with advanced or metastatic renal cell carcinoma. METHODS: The German interdisciplinary S3-guidelines are national clinical practice guidelines that implement the highest methodological quality of evidence-based medicine. Recommendations and evidence-based statements are provided according to available evidence. RESULTS: Supportive and palliative care are important areas of tumor treatment and require knowledge on the management of a variety of issues. This article outlines the management of tumor-related symptoms such as pain, undesired treatment-related effects, palliative care and end-of-life care in patients with renal cell carcinoma. CONCLUSION: Patients with advanced or metastatic renal cell carcinoma should have access to supportive and palliative care according to their individual needs. There is very limited evidence regarding the impact of complementary medicine for the treatment of patients with renal cell carcinoma.
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Carcinoma de Células Renales , Terapias Complementarias , Neoplasias Renales , Carcinoma de Células Renales/terapia , Medicina Basada en la Evidencia , Humanos , Neoplasias Renales/terapia , Cuidados PaliativosRESUMEN
BACKGROUND: In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program 'Palliative care in Pandemics' (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). METHODS: Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. DISCUSSION: For a future "pandemic preparedness" national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.
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COVID-19 , Pandemias , Adulto , Alemania , Humanos , Cuidados Paliativos , SARS-CoV-2RESUMEN
OBJECTIVE: In addition to question prompts for information transfer, we also used prompts to facilitate the expression of emotions. Our aim was to investigate how a question prompt list (QPL) is accepted by patients and whether it enhances interactional empowerment of the patients in the consultation with the radio-oncological treatment team before the beginning of radiotherapy. METHODOLOGY: Adult cancer patients before the beginning of radiotherapy were randomly assigned to the intervention group (IG) or control group (CG). The patients in the IG received a QPL with predefined subsets and subject areas. After the physician's consultation, both groups completed a self-developed, content validated questionnaire on interactional empowerment. The IG evaluated the QPL using a self-developed instrument. RESULT: A total of 279 adult cancer patients participated in the study (IG n = 139/CG n = 140). The participants of the IG reported a significantly higher interactional empowerment compared with those of the CG (t(277) = - 2.71, p = .007, 95% CI [- 1.61, - 0.26], d = 0.29). 60.4% of the IG agreed "rather" or "very" that they used the QPL in consultation with the medical team. CONCLUSION: The QPL used in the consultation improved the self-assessed competence for interaction with the medical team and strengthened the interactional empowerment. The QPL was well accepted by the patients and is to be introduced into a routine as a practicable and simple instrument in the future. The support of patients in addressing concerns and fears is an important innovation.
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Neoplasias/psicología , Defensa del Paciente , Poder Psicológico , Adulto , Comunicación , Femenino , Humanos , Masculino , Persona de Mediana Edad , Participación del Paciente , Relaciones Médico-Paciente , Derivación y Consulta , Autoevaluación (Psicología) , Encuestas y CuestionariosRESUMEN
BACKGROUND: New therapeutic modalities enable good treatment options for patients with advanced and metastatic head and neck cancer. In this context, discussions about the end of life, advance care planning, and palliative concepts are often eclipsed. OBJECTIVE: Analysis of symptom burden and advance directives of palliatively comanaged inpatients using a palliative care self-assessment questionnaire. Based on the Earle quality indicator (QI), the integration of specialized palliative care in deceased inpatients was examined. PATIENTS AND METHODS: Retrospective analysis of head and neck cancer patients cotreated by the palliative care service. Patients were surveyed using the Integrated Palliative Care Outcome Scale (IPOS) questionnaire. RESULTS: The most frequent physical symptoms were weakness (77%), loss of appetite (65%), and poor mobility (65%). Pain was reported by 41% of patients. The most frequent emotional and psychosocial burdens were depression (97%) and worries about illness or treatment (94%), lack of ability to share feelings (77%), lack of information (85%), and organizational problems (77%). In 23% of patients, advanced directives were available. The Earle QI was not achieved. DISCUSSION: Patients report a high degree of symptoms and stress, most often in emotional areas and in terms of communicative and practical needs. This may reflect a need to talk about wishes and expectations concerning the end of life. Palliative care services should aim to address psychosocial needs in particular.
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Neoplasias de Cabeza y Cuello , Cuidados Paliativos , Directivas Anticipadas , Humanos , Estudios Retrospectivos , Encuestas y CuestionariosRESUMEN
BACKGROUND AND PURPOSE: There is little information about the desired place of death of nursing home residents because they are usually not interviewed in population-based representative surveys. In preparation of support services for advance care planning the kind of care and support that nursing home residents desire needs to be systematically determined. METHOD: From October 2016 to January 2017 the residents of 5 nursing homes, municipally owned by Würzburg, were interviewed face-to-face. RESULTS: Of the residents 42.7% could not be interviewed due to cognitive limitations or dementia. The legal guardians of 63 residents declined participation in the study and 68 residents took part in the survey. Of the respondents 43 stated they wanted to pass away in the nursing home (63.2%). If interviewees had a person of trust or felt at home there, the number of those wanting to pass away in a nursing home was significantly higher. A total of 25 interviewees had either a living will, power of attorney for care, or a health care proxy (36.7%) and 55.3% had informed a person of trust in the nursing home about their desired care, usually a nurse (52.8%) or co-resident (36.1%). A total of 50.0% of respondents had informed their general practitioner and 23.5% had not spoken to anyone about their desired care. Especially nurses were specifically mentioned as the appropriate contact person to record desired care (70.4%). DISCUSSION: Residents view their nursing home as the place for dying in a much more positive light compared to frequent discussions contrasting population surveys and actual places of death. End of life prearrangements should be designed as a dynamic process that include persons of trust, nurses and general practitioners.
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Planificación Anticipada de Atención , Demencia/mortalidad , Voluntad en Vida , Cuidado Terminal , Anciano , Anciano de 80 o más Años , Demencia/psicología , Femenino , Humanos , Masculino , Casas de Salud , Encuestas y CuestionariosRESUMEN
BACKGROUND: Survival and prognostic variables in patients with advanced or metastatic non-small cell lung cancer (NSCLC) requiring thoracic palliative radiotherapy using a moderately hypofractionated regime (13-15 × 3 Gy) were evaluated. METHODS: From March 2006 to April 2012, 120 patients with a physician estimated prognosis of 6-12 months were treated with this regime using CT-based 3D conformal radiotherapy. We collected data on patient characteristics, comorbidities, toxicity, and treatment parameters. RESULTS: Radiotherapy was completed as prescribed in 114 patients (95.0 %, premature termination 5.0 %). Acute grade 3 toxicity was seen in 6.4 % of patients. The median survival of all patients was 5.8 months. Nonmetastatic patients survived significantly longer than patients with metastatic disease (median 11.7 months vs 4.7 months, p = 0.0001) and 18.6 % of nonmetastatic patients survived longer than 2 years. In 12.7 % radiotherapy started less than 30 days before death and 14.2 % of patients received radiotherapy within 14 days before death. In the multivariate analysis, good general condition, nonmetastatic disease, and a stable or improved general condition at the end of radiotherapy were significant. The treatment parameters, age, and comorbidities were not statistically significant. CONCLUSION: Our data confirm considerable effectiveness of 13 × 3 Gy with conformal radiotherapy for patients with locally confined NSCLC not fit for radical treatment and raise doubt for this regimen in metastatic patients and ECOG ≥ 2 when burden, acute toxicity, and resources are considered.
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Carcinoma de Pulmón de Células no Pequeñas/radioterapia , Fraccionamiento de la Dosis de Radiación , Neoplasias Pulmonares/radioterapia , Cuidados Paliativos/métodos , Radioterapia Conformacional/métodos , Adulto , Anciano , Anciano de 80 o más Años , Carcinoma de Pulmón de Células no Pequeñas/mortalidad , Carcinoma de Pulmón de Células no Pequeñas/patología , Progresión de la Enfermedad , Femenino , Humanos , Neoplasias Pulmonares/mortalidad , Neoplasias Pulmonares/patología , Masculino , Persona de Mediana Edad , Análisis Multivariante , Estadificación de Neoplasias , Pronóstico , Traumatismos por Radiación/etiología , Traumatismos por Radiación/mortalidad , Planificación de la Radioterapia Asistida por Computador , Análisis de Supervivencia , Tomografía Computarizada por Rayos XRESUMEN
PURPOSE: Proxies of patients with poor performance status could give useful information about the patients' quality of life (QoL). We applied a newly developed questionnaire in a prospective QoL study of patients undergoing radiotherapy for brain metastases in order to make the first move to validate this instrument, and we compared the results with scores obtained using validated patient-completed instruments. MATERIALS AND METHODS: From January 2007 to June 2010, 166 patients with previously untreated brain metastases were recruited at 14 centers in Germany and Austria. The EORTC-QLQ-C15-PAL and the brain module BN20 were used to assess QoL in patients at the start of treatment and 3 months later. At the same time points, 141 of their proxies estimated the QoL with the new DEGRO brain module (DBM), a ten-item questionnaire rating the general condition as well as functions and impairment by symptoms in areas relevant to patients with brain metastases. RESULTS: At 3 months, 85 of 141 patients (60%) with initial response by a proxy were alive. Sixty-seven of these patients (79% of 3-month survivors) and 65 proxies completed the second set of questionnaires. After 3 months, QoL significantly deteriorated in all items of proxy-assessed QoL except headache. Correlations between self-assessed and proxy-assessed QoL were high in single items such as nausea, headache, and fatigue. CONCLUSIONS: The high correlation between self-assessment and proxy ratings as well as a similar change over time for both approaches suggest that in patients with brain metastases, proxy assessment using the DBM questionnaire can be an alternative approach to obtaining QoL data when patients are unable to complete questionnaires themselves. Our self-constructed and first applied DBM is the only highly specific instrument for patients with brain metastases, but further tests are needed for its final validation.
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Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/secundario , Evaluación de la Discapacidad , Apoderado , Calidad de Vida , Encuestas y Cuestionarios , Adulto , Anciano , Anciano de 80 o más Años , Neoplasias Encefálicas/mortalidad , Autoevaluación Diagnóstica , Fraccionamiento de la Dosis de Radiación , Femenino , Humanos , Masculino , Persona de Mediana Edad , Variaciones Dependientes del Observador , Estudios Prospectivos , Psicometría/estadística & datos numéricos , Tasa de SupervivenciaRESUMEN
PURPOSE: The effect of the duration of an educational rotation presented at a palliative care unit on the palliative care knowledge gain and the increase of palliative care self-efficacy expectations are unclear. METHODS: This national prospective multicenter pre-post survey conducted at twelve German University Comprehensive Cancer Centers prospectively enrolled physicians who were assigned to training rotations in specialized palliative care units for three, six, or twelve months. Palliative care knowledge [in %] and palliative care self-efficacy expectations [max. 57 points] were evaluated before and after the rotation with a validated questionnaire. RESULTS: From March 2018 to October 2020, questionnaires of 43 physicians were analyzed. Physicians participated in a 3- (n = 3), 6- (n = 21), or 12-month (n = 19) palliative care rotation after a median of 8 (0-19) professional years. The training background of rotating physicians covered a diverse spectrum of specialties; most frequently represented were medical oncology (n = 15), and anesthesiology (n = 11). After the rotation, median palliative care knowledge increased from 81.1% to 86.5% (p < .001), and median palliative care self-efficacy expectations scores increased from 38 to 50 points (p < .001). The effect of the 12-month rotation was not significantly greater than that of the 6-month rotation. CONCLUSION: An educational rotation presented in a specialized palliative care unit for at least six months significantly improves palliative care knowledge and palliative care self-efficacy expectations of physicians from various medical backgrounds.
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Hospitales para Enfermos Terminales , Oncólogos , Humanos , Cuidados Paliativos , Hospitales Universitarios , Estudios Prospectivos , Actitud del Personal de Salud , Encuestas y CuestionariosRESUMEN
Roads have been associated with decreased reproductive success and biodiversity in avian communities and increased physiological stress in adult birds. Alternatively, roads may also increase food availability and reduce predator pressure. Previous studies have focused on adult birds, but nestlings may also be susceptible to the detrimental impacts of roads. We examined the effects of proximity to a road on nestling glucocorticoid activity and growth in the mountain white-crowned sparrow (Zonotrichia leucophrys oriantha). Additionally, we examined several possible indirect factors that may influence nestling corticosterone (CORT) activity secretion in relation to roads. These indirect effects include parental CORT activity, nest-site characteristics, and parental provisioning. And finally, we assessed possible fitness consequences of roads through measures of fledging success. Nestlings near roads had increased CORT activity, elevated at both baseline and stress-induced levels. Surprisingly, these nestlings were also bigger. Generally, greater corticosterone activity is associated with reduced growth. However, the hypothalamic-pituitary-adrenal axis matures through the nestling period (as nestlings get larger, HPA-activation is greater). Although much of the variance in CORT responses was explained by body size, nestling CORT responses were higher close to roads after controlling for developmental differences. Indirect effects of roads may be mediated through paternal care. Nestling CORT responses were correlated with paternal CORT responses and paternal provisioning increased near roads. Hence, nestlings near roads may be larger due to increased paternal attentiveness. And finally, nest predation was higher for nests close to the road. Roads have apparent costs for white-crowned sparrow nestlings--increased predation, and apparent benefits--increased size. The elevation in CORT activity seems to reflect both increased size (benefit) and elevation due to road proximity (cost). Whether or not roads are good or bad for nestlings remains equivocal. However, it is clear that roads affect nestlings; how or if these effects influence adult survival or reproduction remains to be elucidated.
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Glucocorticoides/metabolismo , Vehículos a Motor , Comportamiento de Nidificación/fisiología , Gorriones/metabolismo , Animales , Corticosterona/metabolismo , Femenino , Masculino , Gorriones/fisiologíaRESUMEN
BACKGROUND: The German healthcare system is facing unprecedented challenges due to the severe acute respiratory syndrome coronavirus type 2 (SARS-CoV-2) pandemic. Palliative care for critically ill patients and their families was also severely compromised, especially during the first wave of the pandemic, in both inpatient and outpatient settings. MATERIALS AND METHODS: The paper is based on our experience in routine inpatient palliative care and partial results of a study conducted as part of the collaborative project "National Strategy for Palliative Care in Pandemic Times (PallPan)". Based on our experience from the inpatient care of patients suffering from severe or life-limiting disease, best-practice examples for improving or maintaining care in the on-going pandemic are described. RESULTS: Restrictive visitor regulations, communication barriers and insufficient possibilities to accompany dying patients or their grieving relatives continue to pose major challenges in general and specialized inpatient palliative care. In order to maintain high-quality palliative care, it is necessary to create structures that enable targeted therapy discussions and end-of-life care in the presence of relatives. Therefore, innovative communication methods like video calls or individualized exceptions from visitor restrictions are needed. CONCLUSIONS: Adequate care for seriously ill and dying patients and their relatives must be guaranteed during the pandemic. Individual arrangements should be arranged and implemented. If available, earlier involvement of specialized palliative care teams can be beneficial.
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Bird feathers are complex structures that passively deflect as they interact with air to produce aerodynamic force. Newtonian theory suggests that feathers should be stiff to effectively utilize this force. Observations of flying birds indicate that feathers respond to aerodynamic loading via spanwise bending, twisting, and sweeping. These deflections are hypothesized to optimize flight performance, but this has not yet been tested. We measured deflection of isolated feathers in a wind tunnel to explore how flexibility altered aerodynamic forces in emulated gliding flight. Using primary feathers from seven raptors and a rigid airfoil, we quantified bending, sweep, and twisting, as well as α (attack angle) and slip angle. We predicted that (1) feathers would deflect under aerodynamic load, (2) bending would result in lateral redirection of force, (3) twisting would alter spanwise α 'washout' and delay the onset of stall, and (4) flexural stiffness of feathers would exhibit positive allometry. The first three predictions were supported by our results, but not the fourth. We found that bending resulted in the redirection of lateral forces more toward the base of the feather on the order of â¼10% of total lift. In comparison to the airfoil which stalled at α = 13.5°, all feathers continued to increase lift production with increasing angle of attack to the limit of our range of measurements (α = 27.5°). We observed that feather stiffness exhibited positive allometry (â mass1.1±0.3), however this finding is not statistically different from other hypothesized scaling relationships such as geometric similarity (â mass1.67). These results demonstrate that feather flexibility may provide passive roll stability and delay stall by twisting to reduce local α at the feather tip. Our findings are the first to measure forces due to feather deflection under aerodynamic loading and can inform future models of avian flight as well as biomimetic morphing-wing technology.
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Aves , Elasticidad/fisiología , Plumas/fisiología , Animales , Fenómenos Biomecánicos , Biomimética , Plumas/anatomía & histología , Vuelo Animal/fisiología , Modelos Biológicos , Alas de AnimalesRESUMEN
BACKGROUND: Similarities and differences of integration of palliative care in clinical care, research and education structures at German Comprehensive Cancer Centers (CCC) are not known in detail. OBJECTIVE: Provide an overview of availability and the way of integration of specialized palliative care at CCCs funded by the German Cancer Aid (Deutsche Krebshilfe, DKH). METHOD: We conducted structured interviews from May to August 2014 with heads of palliative care departments (personally or by telephone). The interviews included a quantitative and a qualitative part. Other stakeholders of CCCs were asked the questions of the qualitative part. We evaluated the qualitative data using the content analysis by Mayring and MAXQDA 11.0. SPSS 21.0 was used for quantitative analysis. RESULTS: 26 interviews were realized in 13 CCCs with 14 sites, which received funding, by DKH till August 2014 (one CCC had two university hospitals). Of these, 12 sites had a palliative care unit (86%), 11 sites had palliative care consulting services available (79%). Participation of palliative care specialists in tumor boards is not provided in 3 institutions (21%) and is often not feasible on regular basis in the other institutions, due to staffing shortage. In 7 sites (50%) defined criteria to integrate palliative care into CCCs were available. In the last 5 years specialized palliative care of 4 sites received an invitation for a research project by another department within the CCC (29%). 10 sites (71%) had started own palliative care research projects. Chairs in palliative care were available in 4 CCCs (29%). CONCLUSION: The extent and depth of palliative care integration in the 14 CCC sites is heterogeneous.
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Medicina Integrativa , Servicio de Oncología en Hospital , Cuidados Paliativos , Alemania , Humanos , Entrevistas como AsuntoRESUMEN
In this paper, we report on the design and performance of a new home-built pulsed gas valve, which we refer to as the Nijmegen Pulsed Valve (NPV). The main output characteristics include a short pulse width (as short as 20 µs) combined with operating rates up to 30 Hz. The operation principle of the NPV is based on the Lorentz force created by a pulsed current passing through an aluminum strip located within a magnetic field, which opens the nozzle periodically. The amplitude of displacement of the opening mechanism is sufficient to allow the use of nozzles with up to 1.0 mm diameter. To investigate the performance of the valve, several characterizations were performed with different experimental methods. First, a fast ionization gauge was used to measure the beam intensity of the free jet emanating from the NPV. We compare free jets from the NPV with those from several other pulsed valves in current use in our laboratory. Results showed that a high intensity and short pulse-length beam could be generated by the new valve. Second, the NPV was tested in combination with a skimmer, where resonance enhanced multiphoton ionization combined with velocity map imaging was used to show that the NPV was able to produce a pulsed molecular beam with short pulse duration (~20 µs using 0.1% NO/He at 6 bars) and low rotational temperature (~1 K using 0.5% NO/Ar at 6 bars). Third, a novel two-point pump-probe method was employed which we label double delay scan. This method allows a full kinematic characterization of the molecular beam, including accurate speed ratios at different temporal positions. It was found that the speed ratio was maximum (S = 50 using 0.1% NO/He at 3 bars) at the peak position of the molecular beam and decreased when it was on the leading or falling edge.
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OBJECTIVES: To analyse and compare the surveys on German doctors and judges on end of life decision making regarding their attitudes on the advance directive and on the dying process. DESIGN: The respondents were to indicate their agreement or disagreement to eight statements on the advance directive and to specify their personal view on the beginning of the dying process. PARTICIPANTS: 727 doctors (anaesthetists or intensive-care physicians, internal specialists and general practitioners) in three federal states and 469 judges dealing with guardianship matters all over Germany. MAIN MEASUREMENTS: Comparisons of means, analyses of variance, pivot tables (chi(2) test) and factor analyses (varimax with Kaiser normalisation). RESULTS: Three attitude groups on advance directive were disclosed by the analysis: the decision model, which emphasises the binding character of a situational advance directive; the deliberation model, which puts more emphasis on the communicative aspect; and the delegation model, which regards the advance directive as a legal instrument. The answers regarding the beginning of the dying process were broadly distributed, but no marked difference was observed between the responding professions. The dying process was assumed by most participants to begin with a life expectancy of only a few days. CONCLUSIONS: A high degree of valuation for advance directive was seen in both German doctors and judges; most agreed to the binding character of the situational directive. Regarding the different individual concepts of the dying process, a cross-professional discourse on the contents of this term seems to be overdue.
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Directivas Anticipadas/ética , Muerte , Rol Judicial , Rol del Médico , Directivas Anticipadas/legislación & jurisprudencia , Directivas Anticipadas/psicología , Actitud del Personal de Salud , Actitud Frente a la Salud , Toma de Decisiones , Análisis Factorial , Femenino , Alemania , Humanos , Tutores Legales , Masculino , Persona de Mediana Edad , Enfermo TerminalRESUMEN
BACKGROUND: With regard to medical decisions and measures at the end of life, the values and attitudes of those concerned are crucial. However, they have hardly been taken into account so far in German empirical studies on euthanasia and medical advance directives. METHOD: Between October 2003 and May 2004, a mail survey of a representative group of internists, anaesthetists and general practitioners from Bavaria, Westphalia-Lippe and Thuringia was conducted. RESULTS: Of 1,557 mailed questionnaires 727 were returned (rate of returns: 46 %). The survey showed, high of appreciation for medical advance directives and, at the same, time scepticism regarding surrogate decision-making by legal guardians and authorized representatives. Furthermore, the survey revealed a considerable amount of uncertainty in the physicians about the application of certain measures at the end of life to the different forms of euthanasia. In practice, many physicians do not comprehend the juridical differentiation between (illegal) active and (legal) passive or indirect euthanasia. CONCLUSIONS: In training and further education more scope should be given to the reflection of medical decisions at the end of life. At the same time, the usual, partly counterintuitive legal definitions should be brought more into line with medical decision making, while taking into account developments in English speaking areas. A transdisciplinary discourse is indispensable for the development of medical ethical and legal justifications suitable as guidance for action.
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Directivas Anticipadas/psicología , Actitud del Personal de Salud , Eutanasia/psicología , Rol del Médico/psicología , Adulto , Directivas Anticipadas/ética , Directivas Anticipadas/legislación & jurisprudencia , Anestesiología , Recolección de Datos , Ética Médica , Eutanasia/ética , Eutanasia/legislación & jurisprudencia , Medicina Familiar y Comunitaria , Femenino , Alemania , Humanos , Medicina Interna , Masculino , Inutilidad Médica/ética , Inutilidad Médica/legislación & jurisprudencia , Inutilidad Médica/psicología , Persona de Mediana EdadRESUMEN
BACKGROUND AND OBJECTIVE: Palliative care and care of the dying are not widely taught in medical education. Yet, through the guidelines of the Federal Medical Council (Bundesärztekammer), doctors are obliged professionally to accompany the dying process. Systematic studies concerning doctors' motivation and action in this special situation are rare. This study aims to evaluate the views and attitudes of general practitioners towards the care for cancer patients in the terminal stage of disease. METHODS: In association with the project of the German Ministry of Health "Patienten als Partner-Tumorpatienten und ihr Mitwirken in medizinischen Entscheidungen" ("Patients as partners: patients with malignant tumor and their collaboration in medical decision making"), a questionnaire was designed for general practitioners based on qualitative interviews. The self-guiding questionnaire comprised questions concerning death and dying, patient-doctor relationship and day-to-day medical actions. RESULTS: 505 general practitioners (GPs) received the questionnaires. 170 were filled in and sent back (33%). The GPs felt responsible for the care of the dying patients. Pain control was the main goal (97%). Symptom control was thought to be important/very important in 87%, the application of life-prolonging measures in 12 %. Basic analgesic medication was prescribed by 93% of GPs. 89%/77% of the general practitioners answered that they were satisfied with the technical equipment of the hospital/clinic, whereas there was a dissatisfaction with psychological and spiritual support. CONCLUSION: General practitioners widely accept their responsibility for the care of the dying patients. Pain control is the major goal in this group of patients. Some items (use of co-analgesia, prescription of peak analgesia) seem to be open to improvements. Despite a high motivation, general practitioners show their dissatisfaction with some aspects of the care for dying people. Palliative care teams could be helpful in this situation.
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Actitud del Personal de Salud , Actitud Frente a la Muerte , Medicina Familiar y Comunitaria , Neoplasias/terapia , Cuidado Terminal , Atención Ambulatoria , Analgésicos/uso terapéutico , Interpretación Estadística de Datos , Femenino , Alemania , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Neoplasias/fisiopatología , Dolor/tratamiento farmacológico , Dolor/etiología , Relaciones Médico-Paciente , Encuestas y CuestionariosRESUMEN
In approximately 5% of individuals with Down syndrome aneuploidy results from a chromosomal rearrangement. FISH analysis on chromosome metaphases and interphase nuclei of 5 individuals with Down syndrome carrying different types of chromosome 21 translocations demonstrated the diagnostic efficiency of this method. By use of different commercially available chromosome 21 specific probes we were able to show that only the cosmid probe specific for the Down syndrome critical region (DCR) in 22qll gave reliable results for interphase analysis of trisomy 21, while the use of chromosome 21 centromere- or of painting probes carry a high risk of a false-negative diagnosis in translocation trisomy 21.
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Síndrome de Down/diagnóstico , Hibridación Fluorescente in Situ/estadística & datos numéricos , Diagnóstico Prenatal/estadística & datos numéricos , Aneuploidia , Niño , Preescolar , Sondas de ADN , Síndrome de Down/genética , Reacciones Falso Negativas , Femenino , Humanos , Recién Nacido , Masculino , Embarazo , Translocación Genética/genéticaRESUMEN
Between March 2002 and August 2003 as part of the research project "Patients as partners -- tumour patients and their participation in medical decisions" tumour patients undergoing palliative therapy (n=272) were interviewed and asked about their level of information, their desired place to die and whether they had prepared an advance directive. Furthermore, 72 relatives of deceased patients who had been looked after by the project's palliative care team were given a similar questionnaire including questions concerning their knowledge about disease and prognosis, the actual place of death and the relevance of advance directives. According to patients and relatives, information particularly about prognosis is unsatisfactory. Of the inter-viewed patients, 75% said they wanted to die at home and 15% in a hospital. According to their relatives, 36% of the patients looked after by the palliative care team had an advance directive. The survey of the relatives showed a significant relation between the preparation of an advance directive and dying at the desired place. According to the relatives, medical and health reasons, hope for an improvement up to the very end,acute worsening of the condition and deficits in medical care were important reasons for dying in hospital against the patient'swish. In future, advance directives should be used as an aid for communication and the planning of care. Therefore, cooperation between doctors and patients based on a partnership is necessary. The required competence in communication should be improved.