Einschätzung der Betreuungsqualität am Lebensende: Übersetzung und Validierung der deutschen Version des „Care of the Dying Evaluation” (CODE-GER). Ein Fragebogen für trauernde Angehörige

Ethische Entscheidungen am Lebensende - Kenntnisstand und Einstellungen Medizinstudierender

Hintergrund und Fragestellung: Arzte werden haufig mit ethischen und rechtlichen Fragestellungen am Ende des Lebens konfrontiert. In dieser Studie wurden Medizinstudierende in Mainz und Berlin zu Kenntnissen der Richtlinien der Bundesarztekammer (BAK) zur Sterbebegleitung, zur moralischen Haltung und rechtlichen Einschatzung bei der Begrenzung medizinischer Masnahmen sowie zur Beurteilung der medizinischen Ausbildung im Hinblick auf diese Fragestellungen befragt. Methodik: 569 Studierende am Fachbereich Medizin der Universitat Mainz im 1. und 4. klinischen Semester und im 3. Tertial des Praktischen Jahres (PJ) sowie im 5. Studienjahr an der Berliner Charite erhielten einen Fragebogen zu eth…

sj-docx-1-pmj-10.1177_02692163211010394 – Supplemental material for “Song of Life”: Results of a multicenter randomized trial on the effects of biographical music therapy in palliative care

Supplemental material, sj-docx-1-pmj-10.1177_02692163211010394 for “Song of Life”: Results of a multicenter randomized trial on the effects of biographical music therapy in palliative care by Marco Warth, Friederike Koehler, Martin Brehmen, Martin Weber, Hubert J Bardenheuer, Beate Ditzen and Jens Kessler in Palliative Medicine

Zwölf Basisregeln der medikamentösen Tumorschmerztherapie

□ Eine erfolgreiche medikamentose Schmerztherapie basiert auf einer sorgfaltigen Schmerzanalyse und Erfassung der Schmerzstarke vor und wahrend der Therapie.

Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries

Abstract Background Recognized disparities in quality of end‐of‐life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i‐CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well…

Factors influencing place of death in Germany.

Abstract Context Knowledge about factors influencing the place of death may be very useful for the planning of public health strategies to improve the situation of terminally ill patients. Objectives The aim of our study was to determine where people died in the German federal state of Rhineland-Palatinate in 2008. We further wanted to detect which factors had an influence on the place of death. Methods Our cross-sectional survey was based on a random sample of 5000 inhabitants of Rhineland-Palatinate who had died between May 25, 2008 and August 24, 2008. Relatives of these randomly drawn deceased persons were interviewed by means of a written survey. Results After removing duplicates, 4967…

Sterben in Rheinland-Pfalz: Gewünschter und tatsächlicher Sterbeort

In Deutschland existieren bisher keine offiziellen Statistiken, die Angaben zu den Sterbeorten enthalten. Das Ziel der Studie bestand darin, den tatsachlichen und den gewunschten Sterbeort von Menschen, die im Jahr 2008 in Rheinland-Pfalz gestorben waren, deskriptiv zu bestimmen. Daruber hinaus sollten Einflussfaktoren fur einen Tod zu Hause vs. Tod in einer Institution identifiziert werden. Die Querschnittstudie basierte auf einer Zufallsstichprobe von 5 000 Einwohnern in Rheinland-Pfalz, die zwischen Mai und August 2008 verstarben. Die Hinterbliebenen dieser Verstorbenen erhielten einen Fragebogen, der sowohl soziodemografische wie gesundheitsspezifische Aspekte behandelte. Nach Entfernun…

Preference for place of death in Germany.

Dying in the preferred place is considered a key requirement for a "good death." The aims of our study were to explore preferred places of death of deceased people and their bereaved relatives in Rhineland-Palatinate (Germany). We further wanted to assess the congruence between preferred and actual place of death.The cross-sectional study was based on a random sample of 5000 inhabitants of Rhineland-Palatinate (Germany) who died between May 25 and August 24, 2008. Relatives of these deceased persons were interviewed by a written survey.After removing duplicates, 4967 questionnaires were sent out, 3832 delivered, and 1378 completed, yielding a response rate of 36.0%. Regarding the deceased, …

WHO Working Group on Health Literacy in Schools

Abstract Background Addressing children`s and adolescents` health literacy is a bedrock for personal and societal growth, health and wellbeing over the life-course, and sustainable development in the WHO European Region and beyond. Promoting health literacy competencies should already be addressed in schools. To outline a strategy for the national education sectors, WHO Europe has launched a working group on health literacy in schools, which aims to develop a conceptual framework for decision makers within the educational and health sector to advocate for health literacy, facilitate the implementation process, and support the uptake on the national level. Methods Based on expert workshops a…

255 QUANTITATIVE SENSORY TESTING: ASSESSMENT OF THE NEUROPATHIC COMPONENT IN CANCER PAIN

818299_supp_mat_ – Supplemental material for Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure

Supplemental material, 818299_supp_mat_ for Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure by Catriona Rachel Mayland, Christina Gerlach, Katrin Sigurdardottir, Marit Irene Tuen Hansen, Wojciech Leppert, Andrzej Stachowiak, Maria Krajewska, Eduardo Garcia-Yanneo, Vilma Adriana Tripodoro, Gabriel Goldraij, Martin Weber, Lair Zambon, Juliana Nalin Passarini, Ivete Bredda Saad, John Ellershaw and Dagny Faksvåg Haugen in Palliative Medicine

Spinal Instability and the Issue of Bracing and Bed Rest.

Nearly 20% of cancer patients develop symptomatic spine metastases. Metastatic spine tumors are most commonly extradural tumors that grow quickly and often cause persistent pain, weakness, paresthesias, urinary/bowel dysfunction, and/or paralysis. Surgical intervention aims to achieve more effective pain management, preserve/restore neurological function, provide local tumor control, and stabilize the spinal column. The desired result of treatment is ultimately to improve a patient's quality of life. Neurosurgeons employ multiple decision frameworks and grading scales to assess the need and effectiveness of a variety of surgical interventions ranging from minimally to maximally invasive. Li…

Assessing quality of care for the dying from the bereaved relatives' perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising …

Fragebogen „Care of the Dying Evaluation“ (CODE™): Qualitative Analyse von Freitextäußerungen Nahestehender von im Krankenhaus verstorbener Patienten

Can Auditors Be Independent? – Experimental Evidence on the Effects of Client Type

Recent regulatory initiatives stress that an independent oversight board, rather than the management board, should be the client of the auditor. In an experiment, we test whether the type of client affects auditors’ independence. Unique features of the German institutional setting enable us to realistically vary the type of auditors’ client as our treatment variable: we portray the client either as the management preferring aggressive accounting or the oversight board preferring conservative accounting. We measure auditors’ perceived client retention incentives and accountability pressure in a post-experiment questionnaire to capture potential threats to independence. We find that the type …

Notfallsituationen und Patientenverfügungen aus der Sicht des Palliativpatienten - Ergebnisse einer Befragung

Einleitung: Patientenverfugungen (PV) erfreuen sich zunehmender Beliebtheit in der Bevolkerung. Reichweite und Berucksichtigung von PV in einer praklinischen Notfallsituation sind jedoch auch nach der gesetzlichen Regelung von 2009 umstritten. Wegen dieser Unsicherheit und Defiziten vorhandener PV wurde eine spezielle Notfall-Patientenverfugung (PALMA: Patientenanweisungen fur lebenserhaltende Masnahmen) fur die Praklinik entwickelt. Nach einer Notarztebefragung in 2008 wurde nun auch eine Untersuchung aus Patientensicht durchgefuhrt. Methoden: Zur Bewertung wurden Patienten der Palliativstation der Universitatsmedizin Mainz bei Entlassung befragt. In einem 20-minutigen Interview wurden sow…

Validation of the German Version of the Quality of Dying and Death Questionnaire for Health Professionals

Purpose: To validate the Quality of Dying and Death (QoDD) instrument for health professionals (QoDD-D-MA) and to test its feasibility in 2 German palliative care units (PCUs). Methods: The QoDD was translated from English to German and then retranslated following European Organisation for Research and Treatment of Cancer (EORTC) guidelines. Data were collected in 2 German PCUs to calculate aspects of validity and reliability. Results: Mean total score was 83.05 (range 49-100; N = 232). The QoDD-D-MA showed satisfactory psychometric properties, Cronbach α = .830; interrater reliability r = .245 ( P < .01). The QoDD-D-MA was independent of patients’ demographic and clinical aspects. Some …

Dying in Germany--unfulfilled needs of relatives in different care settings.

Abstract Context The integration of family members in the dying process and the recognition of their special needs are important factors for the development of high-quality palliative care. Objectives This study aimed to explore important needs and personal experiences of relatives at the end of life, and to detect differences in these needs and experiences for various care settings. Methods Our cross-sectional survey was based on a random sampling of 5000 inhabitants of Rhineland-Palatinate (Germany) who died between May 25 and August 24, 2008. Relatives of these randomly drawn deceased persons were interviewed by a written survey. Results A total of 1378 questionnaires were completed (res…

Time expenditure in patient-related care provided by specialist palliative care nurses in a community hospice service

Although the importance of specialist palliative care in home care programmes for terminally ill patients is well known, German community hospice services did not begin to employ nurses who had specialized in palliative care until the early 1990s. The general tasks of these nurses are sufficiently well defined, but no comprehensive data of their daily workload are available in Germany to date. The present article examines time expenditure in direct patient-related care at the community-based hospice service in Mainz, Germany, by analysing time registration sheets concerning 351 patients who received care from January 2000 until December 2002. Fifty-five per cent of care time spent on each …

Support for families of patients dying with dementia: A qualitative analysis of bereaved family members' experiences and suggestions

AbstractObjective:To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them.Method:We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods.Results:Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support …

Documentation of Severe Pain, Opioid Doses, and Opioid-Related Side Effects in Outpatients with Cancer

Pain severity, prescribed opioids including "rescue" medication for breakthrough pain, bowel movements, and laxative prescription were evaluated in 54 cancer patients treated in an outpatient department devoted to hematology and oncology during 1996. Median number of visits per patient was 5.5 (range 1-48), and median duration of patient care during opioid therapy was 44.5 days (range 1-363). Pain severity and opioid dose were not documented, or documented in less than 25% of visits, in 62.9% and 48.2%, respectively. Rescue doses for breakthrough pain, laxative prescription and bowel movements were never mentioned in 70.4%, 68.5%, and 87% respectively, of all patient charts. Only 3 of 12 ph…

Rückmeldungen Nahestehender verstorbener Patienten zur Versorgung in den letzten Lebenstagen – Lob, Kritik, Vorschläge

Symptom prevalence in the last days of life in Germany: the role of place of death.

Investigations have shown that symptom prevalence varies according to the place of death. We sought to assess the symptom prevalence of chronically ill people in Germany and how this prevalence differs depending on the place of death. We sent questionnaires to 5000 bereaved people in Rhineland-Palatinate (Germany), whose relatives died between May 25 and August 24, 2008. In all, 3832 questionnaires were delivered and 1378 completed (response 36.0%). Most decedents had moderate-to-severe weakness (94.5%), fatigue (93.5%), need for help in daily activities (87.9%), and appetite loss (87.4%). Pain and dyspnea were most severe in hospitals; fatigue, confusion/disorientation, and problems with w…

„Do not rescuscitate“ – Auswirkungen der Einführung eines standardisierten Formulars auf Therapiebegrenzungen in der klinischen Praxis

Hintergrund | Wahrend DNR-Anordnungen seit den 1970 er Jahren international Verwendung finden, gibt es aus Deutschland hierzu nur wenige Daten. Demgegenuber steht die zunehmende gesetzliche Ausrichtung auf den Patientenwillen. Ziel dieser Untersuchung war es, die Haufigkeit und Qualitat von DNR-Anordnungen in einer deutschen Universitatsklinik und mogliche Veranderungen durch die Einfuhrung eines DNR-Formulars zu erfassen. Methoden | In zwei Pravalenzerhebungen wurden alle stationaren Patienten der internistischen Kliniken bezuglich DNR-Anordnungen uberpruft. Im Rahmen von zwei Mitarbeiterbefragungen wurden Pflegende und Arzte personlich angeschrieben. Weiterhin wurden alle Akten der Versto…

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 …

Assessing Somatic, Psychosocial, and Spiritual Distress of Patients with Advanced Cancer

Objective: For adequate distress assessment in palliative care, we developed a screening evaluation tool. Methods: Proven methods of scale construction led to a 53-item pilot form of the Advanced Cancer Patients’ Distress Scale (ACPDS). We used Hornheide Questionnaire (HQ), Palliative Outcome Scale (POS), and Minimal Documentation System (MIDOS) for validation. Advanced cancer patients (N = 168) from 3 centers for palliative medicine (aged 23-89, 51% female) filled out the questionnaire. Results: With a principal component analysis (PCA), we extracted 5 distress scales (emotional reactions/physical restrictions, communication deficits, negative social reactions, pain, and gastrointestinal s…

Effects of a ninety-minute teaching module for fourth-year medical students on a palliative care ward with student-patient encounter.

The encounter of students and patients with a terminal illness plays an important role in this teaching. However, for ethical as well as practical reasons, there are limitations regarding the involvement of patients in palliative care teaching. In this study we investigate the effects of an obligatory 90-minute teaching intervention on a palliative care ward by means of quantitative and qualitative methods.Self-perceived knowledge, confidence and attitudes were elicited by means of a questionnaire which has been developed by the authors. The instrument includes statements which could be answered by means of numerical rating scales - NRS (1 = very low, 10 = very high). In addition, open-ende…

818299_supp_mat_ – Supplemental material for Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure

Supplemental material, 818299_supp_mat_ for Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure by Catriona Rachel Mayland, Christina Gerlach, Katrin Sigurdardottir, Marit Irene Tuen Hansen, Wojciech Leppert, Andrzej Stachowiak, Maria Krajewska, Eduardo Garcia-Yanneo, Vilma Adriana Tripodoro, Gabriel Goldraij, Martin Weber, Lair Zambon, Juliana Nalin Passarini, Ivete Bredda Saad, John Ellershaw and Dagny Faksvåg Haugen in Palliative Medicine

Bone marrow punctures and pain

Abstract We prospectively analysed pain in 263 patients induced by a frequent diagnostic procedure for oncologists, specifically the bone marrow puncture. Substantial pain (5 and more out of 10 on a numerical rating scale) was reported by 30.4% of patients, but physicians did not realize this procedure-related pain of patients in more than 50% of such punctures. The necessity for improved analgesia is emphasized by the fact, that at least 50% of patients experiencing substantial pain wished to receive concomitant medication in future punctures. Duration of the procedure was identified as sole independent predictive factor for patients’ pain intensity, while patients’ characteristics like ge…

Observation of the rare B(s)(0) + decay from the combined analysis of CMS and LHCb data.

This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported licence.-- et al.

Dying With Dementia

Advanced dementia is increasingly being regarded as a terminal disease (1, 2). Studies in English-speaking countries have led to the conclusion that the palliative care of patients with dementia at the end of their lives is now inadequately adapted to their special needs, not only for those dying at home, but also for those dying in hospitals and nursing homes (3, 4). Insufficient symptom control, failure to recognize that the patient is dying, and unnecessary and stressful interventions such as artificial nutrition or physical restraints are common (5, 6). Most of the pertinent studies in Germany have looked only at the symptom burden of persons dying of cancer in palliative care facilitie…

“Song of Life“: Erste Ergebnisse einer randomisiert, kontrollierten Studie zur Wirksamkeit einer biografischen Musiktherapie-Intervention in der Palliativversorgung [158]

Palliative Sedierung – wann, wie, warum?

How to Identify the Inpatient's Palliative Care Needs in a Hemato-Oncological Ward: Ask the Nurses!

Validation of the German Version of the Quality of Dying and Death Questionnaire for Informal Caregivers (QODD-D-Ang).

Abstract Context The quality of dying and death (QOD) influences end-of-life care for patients and their relatives. To the best of our knowledge, there are currently no validated standard instruments for evaluating the QOD of patients in palliative care units (PCUs) in Germany. Objectives This study aimed to validate the German version of the multidimensional questionnaire "Quality of Dying and Death" for informal caregivers (QODD-Deutsch-Angehorige [QODD-D-Ang]) and provide a detailed report on its validity and reliability. Methods The QODD was forward/backward translated following the European Organization for Research and Treatment of Cancer guidelines. Data collected in two German palli…

Palliative Care Patients’ Quality of Dying and Circumstances of Death—Comparison of Informal Caregivers’ and Health-Care Professionals’ Estimates

Background: Patient-reported outcomes are usually considered to be the gold standard assessment. However, for the assessment of quality of dying and death, ratings of informal caregivers (ICGs) or health-care professionals (HCPs) must be considered for ethical and methodological reasons. This article aims to present results of ICGs’ and HCPs’ estimates of the questionnaire, quality of dying and death (QoDD) on patients who died in PCUs and to compare the level of agreement of both ratings/raters. Methods: The parent validation study to this analysis assessed the ICG and HCP versions of the QoDD. Descriptive statistics are presented for each item in both versions. T tests for the estimation …

Laying Out and Viewing the Body at Home — A Forgotten Tradition?

“Song of Life”: Results of a multicenter randomized trial on the effects of biographical music therapy in palliative care

Background: Awareness for the importance of psychological and spiritual needs in patients with terminal diseases has increased in recent years, but randomized trials on the effects of psychosocial interventions are still rare. Aim: To investigate the efficacy of the “Song of Life” music therapy intervention regarding the emotional and psycho-spiritual dimensions of quality of life. Design: Patients were randomly assigned to either “Song of Life” or a relaxation intervention. “Song of Life” is a novel three-session music therapy intervention working with a biographically meaningful song. Primary outcome was the improvement in psychological quality of life. Secondary outcomes included spiritu…

sj-docx-1-pmj-10.1177_02692163211010394 – Supplemental material for “Song of Life”: Results of a multicenter randomized trial on the effects of biographical music therapy in palliative care

Supplemental material, sj-docx-1-pmj-10.1177_02692163211010394 for “Song of Life”: Results of a multicenter randomized trial on the effects of biographical music therapy in palliative care by Marco Warth, Friederike Koehler, Martin Brehmen, Martin Weber, Hubert J Bardenheuer, Beate Ditzen and Jens Kessler in Palliative Medicine

Improving End-of-Life Care in Hospitals

Objectives: To explore and document the experiences and expectancies of bereaved family members concerning the end-of-life (EOL) care of their deceased relative in a general hospital setting. Methods: Cross-sectional study using a questionnaire that included open-ended questions. Free-text answers were evaluated with qualitative content analysis. A total of 270 family members provided information about improvements in inpatient care. Results: Families described structural deficiencies. Furthermore, they requested a more holistic patient health care beyond medical treatment and expressed the wish for more professional support for families. Discussion: The view of bereaved families confirmed …

Hospital end-of-life care: families' free-text notes.

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care o…