Scoping review of end-of-life care for persons with anorexia nervosa.

BACKGROUND: End-of-life (EOL) care is the part of palliative care intended for persons nearing death. In anorexia nervosa (AN), providing EOL care instead of coercing life-sustaining measures is controversial. The existing literature has not been synthesized yet. To clearly delineate differing views and identify open questions as well as areas of possible consensus, we conducted the first-ever synthesis of the existing literature. METHODS: We searched EMBASE, PubMed, PsycInfo, and Web of Science for scientific publications on forgoing coerced life-sustaining measures and/or providing EOL care for persons with AN who refuse life-sustaining measures, typically artificial nutrition. Palliative care outside of the EOL context and medical assistance in dying were not reviewed. As very little quantitative studies were identified, we qualitatively analyzed conceptual questions, ethical reasoning, legal aspects, stakeholder attitudes, practical aspects, stakeholder needs, and outcome. RESULTS: We identified 117 eligible publications from 1984 to 2023, mainly case reports (n=26 different cases) and ethical analyses. Conceptualizations of key terms such as terminality, futility, and decision-making capacity (DMC) in AN varied widely and were often value-laden and circular. Ethical reasoning centered on weighing the preservation of life versus quality of life in the context of uncertainty about DMC and likelihood of clinical remission. Studies on stakeholder attitudes reflected this challenge. In some cases, courts ruled against coerced life-sustaining measures and/or in favor of EOL care for persons with AN. While eligibility criteria were contested, recommendations for deliberating about and providing EOL care were consistent. We identified only one study on stakeholder needs and none on outcome. Case reports described quality of life under EOL care as good and death as the most frequent outcome but engagement in voluntary treatment and (partial) clinical remission in some. CONCLUSIONS: The debate around EOL care in AN needs consented, coherent terminology whose value base is reduced to a minimum and made transparent. While more empirical research into decision-making in AN and predictors of outcome might help reduce uncertainty, fundamental normative questions need to be addressed, for example regarding the ethico-legal significance of treatment refusals, the weighing of quantity versus quality of life and the appropriateness of diagnosis-based ethico-legal exceptionalism such as hard paternalism. More research is needed on outcome of and stakeholder needs in EOL care for persons with AN.

[Dignity in terminal illness - confronting loss of dignity and suffering at the end of life]. / Würde bei unheilbarer Erkrankung ­ Würdeverlust und Leiden am Lebensende begegnen.

How can we act in a dignity-oriented way when we usually only have an abstract idea of dignity? How can we fundamentally strengthen dignity so that we do not focus on it in a deficit-oriented way only when the sense of dignity is threatened?Looking at the concept of dignity in the health care system can be done from two angles: First, we can direct our gaze to abuses, violations of dignity, and rightly become outraged about it. Moreover, we have gained collective experience of dignity violations through the Covid-19 pandemic and continue to experience this. The second focus is on enhancing the dignity, dignified, and dignity-oriented aspirations of people working in the health care system. The following article is intentionally devoted to this second view, opening up possibilities for dignity-strengthening care in the health care system. In doing so, we draw substantially on the research and interventions developed by Harvey M. Chochinov and his research team from Canada. The article offers an overview of theoretical foundations, food for thought for self-reflection, and action aids for practical application.

[Basic Knowledge of Drug Pain Therapy in the Palliative Situation]. / Basiswissen zur medikamentösen Schmerztherapie in der Palliativsituation.

This review provides an overview of the basic knowledge of drug pain therapy in the palliative situation. Pain is one of the main symptoms in 60 to 90 % of cancer patients. Pain also develops with neurological and other diseases that occur in end-of-life situations. To address this symptom, a holistic strategy is required that encompasses all physical, psychological, social, and spiritual aspects of the multi-dimensional pain experience ("total pain" concept).Drug treatment for cancer pain has been based on a stepwise approach for many years, starting with non-opioid analgesics, followed by moderate and strong opioids. In contrast, today's pain management is determined more by the actual intensity of this aversive event.The pain assessment should be tailored to identify a nociceptive vs. neuropathic pain component that needs to be challenged by the most appropriate drug therapies. Non-opioid analgesics are ideal substances for relieving nociceptive pain. Antidepressants and anticonvulsants reduce the intensity of new neuropathic pain. Opioids are suitable for all types of pain, but are restricted to a second line choice. Among all opioids are tilidine and tramadol prodrugs, which only relieve pain after activation in the liver. Drug-drug interactions may also block this activation. Rapid release opioids should be used for cancer breakthrough pain. Transdermal opioid applications are recommended for swallowing disorders, but usually not to initiate pain control. An opioid switch can be performed if side effects such as hallucinations for the selected opioid are more pronounced than the pain reduction.

Space for intuition - the 'Surprise'-Question in haemato-oncology: Qualitative analysis of experiences and perceptions of haemato-oncologists.

BACKGROUND: Early integration of palliative care can improve outcomes for people with cancer and non-cancer diagnoses. However, prediction of survival for individuals is challenging, in particular in patients with haematological malignancies who are known to have limited access to palliative care. The 'Surprise'-Question can be used to facilitate referral to palliative care. AIM: To explore experiences, views and perceptions of haemato-oncologists on the use of the 'Surprise'-Question in the haemato-oncology outpatients clinics of a university hospital in Germany. DESIGN: A qualitative study using individual semi-structured interviews transcribed verbatim and analysed thematically based on the framework approach. SETTING/PARTICIPANTS: The study took place at the haemato-oncology outpatient clinic and the bone marrow transplantation outpatient clinic of a university hospital. Nine haemato-oncologists participated in qualitative interviews. RESULTS: Thematic analysis identified 4 themes and 11 subthemes: (1) meaning and relevance of the 'Surprise'-Question; (2) feasibility; (3) the concept of 'surprise' and (4) personal aspects of prognostication. A key function of the 'Surprise'-Question was to stimulate intuition and promote patient-centred goals of care by initiating a process of pause → reflection → change of perspective. It was easy and quick to use, but required time and communication skills to act on. Participants' training in palliative care enhanced their willingness to use the 'Surprise'-Question. CONCLUSION: Irrespective of its use in prognostication, the 'Surprise'-Question is a valuable tool to facilitate consideration of patient-centred goals and promote holistic care in haemato-oncology. However, prognostic uncertainty, lack of time and communication skills are barriers for integration into daily practice. Further research should involve haematology patients to integrate their needs and preferences.

Gaze3DFix: Detecting 3D fixations with an ellipsoidal bounding volume.

Nowadays, the use of eyetracking to determine 2-D gaze positions is common practice, and several approaches to the detection of 2-D fixations exist, but ready-to-use algorithms to determine eye movements in three dimensions are still missing. Here we present a dispersion-based algorithm with an ellipsoidal bounding volume that estimates 3D fixations. Therefore, 3D gaze points are obtained using a vector-based approach and are further processed with our algorithm. To evaluate the accuracy of our method, we performed experimental studies with real and virtual stimuli. We obtained good congruence between stimulus position and both the 3D gaze points and the 3D fixation locations within the tested range of 200-600 mm. The mean deviation of the 3D fixations from the stimulus positions was 17 mm for the real as well as for the virtual stimuli, with larger variances at increasing stimulus distances. The described algorithms are implemented in two dynamic linked libraries (Gaze3D.dll and Fixation3D.dll), and we provide a graphical user interface (Gaze3DFixGUI.exe) that is designed for importing 2-D binocular eyetracking data and calculating both 3D gaze points and 3D fixations using the libraries. The Gaze3DFix toolkit, including both libraries and the graphical user interface, is available as open-source software at https://github.com/applied-cognition-research/Gaze3DFix .

Silencing of fas, fas-associated via death domain, or caspase 3 differentially affects lung inflammation, apoptosis, and development of trauma-induced septic acute lung injury.

Activation of Fas signaling is a potentially important pathophysiological mechanism in the development of septic acute lung injury (ALI). However, so far the optimal targets within this signaling cascade remain elusive. Thus, we tested the hypothesis that in vivo gene silencing of Fas, Fas-associated via death domain (FADD), or caspase 3 by intratracheal administration of small interfering RNA would ameliorate ALI in a clinically relevant double-hit mouse model of trauma induced septic lung injury. Male C57Bl/6 mice received small interfering (Fas, FADD, caspase 3) or control RNA 24 h before and 12 h after blunt chest trauma or sham procedures. Polymicrobial sepsis was induced by cecal ligation and puncture 24 h after chest trauma. Twelve or 24 h later, lung tissue, plasma, and bronchoalveolar lavage fluid were harvested. During ALI, lung apoptosis (active caspase 3 Western blotting, TUNEL staining) was substantially increased when compared with sham. Silencing of caspase 3 or FADD both markedly reduced pulmonary apoptosis. Fas- and FADD-small interfering RNA administration substantially decreased lung cytokine concentration, whereas caspase 3 silencing did not reduce lung inflammation. In addition, Fas silencing markedly decreased lung neutrophil infiltration. Interestingly, only in response to caspase 3 silencing, ALI-induced lung epithelial barrier dysfunction was substantially improved, and histological appearance was beneficially affected. Taken together, downstream inhibition of lung apoptosis via caspase 3 silencing proved to be superior in mitigating ALI when compared with upstream inhibition of apoptosis via Fas or FADD silencing, even in the presence of additional anti-inflammatory effects. This indicates a major pathophysiological role of lung apoptosis and suggests the importance of other than Fas-driven apoptotic pathways in trauma-induced septic ALI.