Limiting treatment and shortening of life: data from a cross-sectional survey in Germany on frequencies, determinants and patients' involvement

Background: Limiting treatment forms part of practice in many fields of medicine. There is a scarcity of robust data from Germany. Therefore, in this paper, we report results of a survey among German physicians with a focus on frequencies, aspects of decision making and determinants of limiting treatment with expected or intended shortening of life. Methods: Postal survey among a random sample of physicians working in the area of five German state chambers of physicians using a modified version of the questionnaire of the EURELD Consortium. Information requested referred to the patients who died most recently within the last 12 months. Logistic regression was performed to analyse associations between characteristics of physicians and patients regarding limitation of treatment with expected or intended shortening of life. Results: As reported elsewhere, 734 physicians responded (response rate 36.9%) and of these, 174 (43.2%) reported a withholding and 144 (35.7%) a withdrawal of treatment. Eighty one physicians estimated that there was at least some shortening of life as a consequence. In 25.9% of these cases hastening death had been discussed with the patient at the time or immediately prior to this action. Types of treatment most frequently limited was artificial nutrition (n = 35). Bivariate analysis indicates that limitation of treatment with possible or intended shortening of life for patients aged > 75 years is performed significantly more often (p = 0.007, OR 1.848). There was significantly less limitation of treatment in patients who died from cancer compared to patients with other causes of death (p = 0.01, OR 0.486). There was no significant statistical association with physicians' religion, palliative care qualification or frequencies of limiting treatment. Conclusions: In comparison to recent research from other European countries, limitation of treatment with expected or intended shortening of life is frequently performed amongst the investigated sample. The role of clinical and non-medical aspects possibly relevant for physicians' decision about withholding or withdrawal of treatment with possible or intended shortening of life and reasons for non-involvement of patients should be explored in more detail by means of mixed method and interdisciplinary empirical-ethical analysis

What is an “early palliative care” intervention? A scoping review of controlled studies in oncology

Abstract Introduction Early palliative care (EPC) has been advocated to improve cancer patients' health. However, EPC differs with regard to its elements and target groups. It is not known which parts of EPC contribute to effectiveness for which patient group. This scoping review provides a structured analysis of EPC interventions and outcome measures. Design We searched EMBASE, MEDLINE, CINAHL, and CENTRAL up to February 2022. We included randomized controlled trials (RCT), nonrandomized trials, cohort studies (CS), and controlled before‐after studies of EPC in adult patients in English, Dutch, and German language. Interventions had to be self‐labeled as EPC. Screening and data extraction were performed by two raters. A structured analysis incorporating the TIDieR checklist was performed to describe the elements of the interventions. Results We screened 2651 articles, resulting in 40 articles being included: 34 studies were RCT and six studies were CS with a mean sample size of 208 patients. Patients with pancreatic (n = 10) and lung cancer (n = 9) were most often included. Studies reported different reference points for the onset of EPC such as time after diagnosis of incurable cancer (n = 18) or prognosis (n = 9). Thirteen studies provided information about elements of EPC and eight studies about the control intervention. Most frequent elements of EPC were symptom management (n = 28), case management (n = 16), and advance care planning (ACP; n = 15). Most frequently reported outcome measures were health‐related quality of life (n = 26), symptom intensity (n = 6), resource use, and the patient's mood (n = 4 each). Conclusion The elicited heterogeneity of ECP in combination with deficits of reporting are considerable barriers that should be addressed to further develop effective EPC interventions for different groups of cancer patients

Ethical challenges by using assistive technologies in dementia home care – potential of advance care planning

Recently, an increasing number of technologies have been developed to assist in the support of people in need of care. People with dementia (PwD) are also potential users of such systems when used at home. The consequences of the illness for clients and their families and the use of technical systems in the home setting have resulted in specific ethical challenges. A difficulty lies in the clients’ expressing their will to use the systems and in the dependency of ethical risks on the actual system and its direct application. Integrating techni - cal scenarios into the discussion about future care within the concept of Advance Care Planning offers a potential to address ethical problems prospectively. Furthermore, it can promote cli - ent-centered care of PwD and their families with regard to the use of assistance systems. Questions remain regarding the con - sequences of non-use of assistance systems and their impact on the home care situation.Recientemente, se ha desarrollado un número cada vez mayor de tecnologías para asistir a las personas que nece sitan cuidados. Las personas con demencia (PcD) también son usuarios potenciales de estos sistemas en el hogar. Las conse cuencias de la enfermedad para los pacientes y sus familias, así como el uso de dichos sistemas técnicos en el hogar, han dado lugar a desafíos éticos específicos. Una de las dificultades radica en la expresión de la voluntad de los pacientes de utilizar dichos sistemas y de los riesgos éticos de su aplicación directa dentro del sistema actual. La integración de escenarios técnicos sobre el futuro del cuidado dentro del concepto de Planificación An ticipada de la Atención ofrece la posibilidad de abordar los pro blemas éticos de forma prospectiva. Además, puede promover el cuidado de las PcD centrado en el cliente y sus familias con respecto al uso de los sistemas de asistencia. Persisten no obs tante preguntas sobre las consecuencias de la falta de uso de sistemas de asistencia y su consecuente impacto en la situación de los cuidados a domicilio

Desafíos éticos en el uso de tecnologías asistivas en el cuidado a domicilio de la demencia -el potencial de la planificación anticipada del cuidado

Palmdorf S, Nadolny S, Hochmuth A, Stark AL, Dockweiler C. Ethical Challenges by Using Assistive Technologies in Dementia Home Care – Potential of Advance Care Planning. Dilemata. Revista International Éticas Aplicadas. 2019;11(30):13-26.Recently, an increasing number of technologies have been developed to assist in the support of people in need of care. People with dementia (PwD) are also potential users of such systems when used at home. The consequences of the illness for clients and their families and the use of technical systems in the home setting have resulted in specific ethical challenges. A difficulty lies in the clients’ expressing their will to use the systems and in the dependency of ethical risks on the actual system and its direct application. Integrating technical scenarios into the discussion about future care within the concept of Advance Care Planning offers a potential to address ethical problems prospectively. Furthermore, it can promote client- centered care of PwD and their families with regard to the use of assistance systems. Questions remain regarding the consequences of non-use of assistance systems and their impact on the home care situation

Interventions to improve physical activity in daily life of people with intellectual disabilities. Detailed results presentation of a Scoping Review

Bruland D, Schulenkorf T, Nutsch N, Nadolny S, Latteck Ä-D. Interventions to improve physical activity in daily life of people with intellectual disabilities. Detailed results presentation of a Scoping Review. Bielefeld: Universität Bielefeld; 2019.Today, low levels of physical activity are a major health problem for society and are associated with an increased risk for chronic diseases especially by people with intellectual disability. To our knowledge, target group concepts to promote physical activity addressing daily life are rarely. For this, the aim of our research project is to develop, test and validate a multi-modal target-group-oriented intervention. This intervention will promote a physically active lifestyle by promoting health-related literacy, Physical activity-related health competence and self-efficacy. The first step of the project is to review the current state of interventions promoting physical activity in people with intellectual disability with a focus on daily life activities. This article describes the approach and the findings of the conducted scoping review. In general, 33 articles could be included. They were sorted by overviews, systematic reviews, studies, and curriculum. For a good overlook and comparision data were mapped for each category, except the single curriculum. Likewise, for all categories the results were summarized via a qualitative thematic analysis in a narrative format. For this, we identify relevant statements in the articles according to our research questions: a) How is motivation of the participants discussed? b) How are the needs of participants integrated in the intervention? c) Are competencies/physical requirements for physical activity of users analyzed and if so, how? d) How are the interventions evaluated? We added categories if we think that they are important for our own intervention development. This report has three goals: a) It is a tool-box (pool of ideas) mainly with basic concepts and tested strategies for our own development but also with other information about e.g. barriers and facilitator. b) Above that, with the detailed results presentation, we would like to achieve good transparency on which data basis our intervention will be developed. c) We like to share our results with interested

Evaluating requests for physician‐assisted suicide. A survey among German oncologists

Abstract Background Cancer patients form a notable proportion of requestors for physician‐assisted suicide (PAS). This manuscript provides data on German oncologists' views concerning due criteria for the assessment of requests for PAS and quality assurance. Methods The German Society of Haematology and Medical Oncology (DGHO) has conducted a survey among its members to elicit data about practices and views on regulating PAS in March 2021. Descriptive analysis and bivariate logistic regression of quantitative data on socio‐demographic and other determinants possibly associated with respondents' views on PAS as well as content analysis of qualitative data were performed. Results About 57.1% (n = 425) of respondents (n = 745) indicated that they had been asked for information about PAS by patients. Information about palliative (92.7%; n = 651) and psychological care options (85.6%; n = 598) was deemed most important in cases of requests for PAS. More than half of the respondents (57.6%; n = 429) were in favour of a formal expert assessment of decisional capacity and about 33.4% (n = 249) favoured a time span of 14 days between the counselling and prescription of a lethal drug. There was no association between participants who received more requests and a preference for disclosing publicly their willingness to assist with suicide. A majority of respondents requested measures of quality assurance (71.3%; n = 531). Conclusion According to respondents' views, the regulation of PAS will require diligent procedures regarding the assessment of decisional capacity and counselling. The findings suggest that the development of adequate and feasible criteria to assess the quality of practices is an important task

Limiting treatment and shortening of life

$\textbf {Background:}$ Limiting treatment forms part of practice in many fields of medicine. There is a scarcity of robust data from Germany. Therefore, in this paper, we report results of a survey among German physicians with a focus on frequencies, aspects of decision making and determinants of limiting treatment with expected or intended shortening of life. $\textbf {Methods:}$ Postal survey among a random sample of physicians working in the area of five German state chambersof physicians using a modified version of the questionnaire of the EURELD Consortium. Information requested referred to the patients who died most recently within the last 12 months. Logistic regression was performed to analyse associations between characteristics of physicians and patients regarding limitation of treatment with expected or intended shortening of life. $\textbf {Results:}$ As reported elsewhere, 734 physicians responded (response rate 36.9%) and of these, 174 (43.2%) reported a withholding and 144 (35.7%) a withdrawal of treatment. Eighty one physicians estimated that there was at least some shortening of life as a consequence. In 25.9% of these cases hastening death had been discussed with the patient at the time or immediately prior to this action. Types of treatment most frequently limited was artificial nutrition ($\it n$ = 35). Bivariate analysis indicates that limitation of treatment with possible or intended shortening of life for patients aged > 75 years is performed significantly more often ($\it p$ = 0.007, OR 1.848). There was significantly less limitation of treatment in patients who died from cancer compared to patients with other causes of death ($\it p$ = 0.01, OR 0.486). There was no significant statistical association with physicians’ religion, palliative care qualification or frequencies of limiting treatment. $\textbf {Conclusions:}$ In comparison to recent research from other European countries, limitation of treatment with expected or intended shortening of life is frequently performed amongst the investigated sample. The role of clinical and non-medical aspects possibly relevant for physicians’ decision about withholding or withdrawal of treatment with possible or intended shortening of life and reasons for non-involvement of patients should be explored in more detail by means of mixed method and interdisciplinary empirical-ethical analysis

Case management and care expertise as a prevention approach for adults with intellectual disabilities (FaPP-MgB) : study protocol for a randomized-controlled trial

Background: Adults with intellectual disabilities have a higher prevalence of unhealthy eating habits, stress, low levels of mobility, and comparable drug consumption as the general population. Consequently, they suffer from several chronic diseases earlier and more often, but there are fewer prevention and health promotion services including this population. The goal of this study is to determine if an advanced practice nursing approach in the community with home visits is an effective way to improve the health status of adults with intellectual disabilities. Methods: We will conduct a randomized-controlled trial with waiting list design in Hamburg, Germany. Inclusion criteria are diagnosis ICD F70-F79 and exclusion criteria are care level > 3 according to the German Social Code XI or being at the end-of-life. Participants will be block randomized. The intervention consists of advanced practice nurses performing case management, social space analysis, prevention planning, and counseling through four outreach home visits on nutrition, mobility, addiction, and stress. Comparison is usual care. The primary outcome is health status (WHODAS) after 12 months. Secondary outcomes are health-related quality of life (EQ-5D) and resilience (RS-11) after 6 and 12 months. The calculated sample size is 256 with an estimated dropout of 30%. Raters and analysts will be blinded. Analysis will be performed using ANCOVAs. Discussion: By providing case management and utilizing their nursing expertise, advanced practice nurses will provide valuable input and guidance on prevention and health promotion for people with intellectual disabilities. They will close the gap between health and social care, which is prominent in Germany, through cooperation between the existing care sectors. The findings will be disseminated in peer-reviewed journals and presented at national and international conferences. Trial registration: German Clinical Trials Register, DRKS00028771, registered 4 July 2022, Universal Trial Number: U1111-1277–0595.PeerReviewe