[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.

Sequential use of the Demoralization Scale in palliative care: feasibility, strain, and personal benefits of participation for patients at the end of life.

PURPOSE: To determine the efficacy of specifically targeted interventions in palliative care, sequential use of the Demoralization Scale (DS) could be a useful approach. This study's main objective was to evaluate the weekly use of the DS for palliative care inpatients. Secondary objectives were the analysis of the DS, self-perceived strain, and personal benefits of the assessment. METHODS: Patients admitted to 3 palliative care units (PCUs) were tested for eligibility and asked to complete the DS weekly. Self-perceived strain was rated on a numeric scale (0-10). Open questions about strain and helpfulness of the survey were asked. RESULTS: Over 10 months, 568 patients were admitted to the PCUs; 193 patients were eligible. A total of 120 patients participated once, of whom only 41 (34.1%) participated at least twice. The mean self-perceived strain caused by the assessment was 1.53 at T1 (N = 117, SD = 2.27, max = 8). CONCLUSIONS: While the single use of the DS in PCUs seems justified in view of the possibility to detect severe demoralization with overall low to moderate strain and self-perceived helpfulness for patients, the feasibility of the sequential use of the DS has to be regarded critically. Our study undermines the complexity of assessing changes in self-reported psychological phenomena with end-of-life patients at a PCU. The most limiting factors for participating twice were that patients were either discharged from hospital or declined further participation.

Assessment of the quality of end-of-life care: translation and validation of the German version of the "Care of the Dying Evaluation" (CODE-GER) - a questionnaire for bereaved relatives.

BACKGROUND: International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the "Care of the Dying Evaluation" (CODE) into German (CODE-GER). METHODS: Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient's death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0-10). RESULTS: Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = -.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low. CONCLUSION: The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research. TRIAL REGISTRATION: This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register ( DRKS00013916 ).

Feasibility, acceptability and adaption of dignity therapy: a mixed methods study achieving 360° feedback.

BACKGROUND: Dignity Therapy (DT) is a short-term intervention to reduce psychological suffering in end-of-life care. Its strength lies in evidenced-based development and investigation. The aim of the present study is to investigate the feasibility of DT at German palliative care units (PCU), as well as the acceptability and adaption of a German version of the DT question protocol (DTQP). METHOD: A clinical multicentre mixed methods study, whereby patients and relatives provided quantitative (feedback questionnaires) and qualitative (cognitive interviews) data on the DT intervention. Before using the DTQP on patients, healthcare professionals (HCP) were invited to participate in cognitive interviews to provide input on DT. Therefore 360° feedback was achieved. Finally, the conducted DT interviews were examined. The study took place at two German PCUs (Mainz and Würzburg). Participating HCPs were physicians, psychologists, nurses and chaplains. Patients admitted to the PCUs were eligible to participate if they had a terminal illness and a life expectancy ranging from 2 weeks to 12 months. RESULTS: Out of 410 admitted patients, 72 were eligible and 30 (7.3% of all patients and 41.7% of eligible patients) participated. On average, 9 questions from the DTQP were used per DT interview. Subsequent cognitive interviews with patients produced four main categories of feedback (on the title, the question protocol, wording, and the questions actually asked). Finally, of the 30 participants, 19 completed the feedback questionnaire, as did 26 relatives. Of those, 18 patients and 24 relatives evaluated DT as helpful. CONCLUSIONS: DT is feasible for German PCUs. Our research yielded a validated German translation of the DTQP following EORTC guidelines and findings were reported according to the COREQ checklist for qualitative design. TRIAL REGISTRATION: The study was registered retrospectively on the 22nd of December 2017 at the German Clinical Trials Register ( DRKS00013627 ).

Family members of deceased palliative care patients receiving bereavement anniversary cards: a survey on the recipient's reactions and opinions.

BACKGROUND: Bereavement support is part of palliative care. Sending out bereavement anniversary cards is one intervention of follow-up support for the bereaved. This study evaluated the suitability of bereavement anniversary cards as an appropriate method in bereavement care. METHODS: A questionnaire was sent to each card recipient since the starting point of this practice (October 2014-June 2015). Data was analyzed descriptively. RESULTS: 24 of 68 deliverable questionnaires were returned (response rate 35%). 22 out of 24 recipients felt pleased receiving the card. No participant felt annoyed on receiving the bereavement anniversary card; every participant agreed to at least one positive reaction (i.e. pleased, grateful or consoled). CONCLUSIONS: The participants' reactions and opinions about receiving the anniversary card were decidedly positive and indicate the continuation of this practice. Those few less pleased reactions may be related to timing and the first anniversary of the patients' death and therefore an expression of grief rather than a dissatisfaction with bereavement anniversary cards, as such.

Palliative care in undergraduate medical education - consolidation of the learning contents of palliative care in the final academic year.

Background: Demographic change and the medical imperative to accompany patients at all times and also in the case of illness leading to death require good basic knowledge of palliative care in large parts of the medical profession. Palliative care has been introduced into undergraduate medical education as a compulsory subject: "interdisciplinary subject 13 palliative care" (Q13). While course concepts for Q13 have already been positively evaluated, assessment of the consolidation and practical relevance of the knowledge taught is lacking. Methods: Assessment of the consolidation of the learning content from Q13 after the practical year (the "practical year" is the sixth and final year of undergraduate medical education in Germany) by means of a survey with a proven questionnaire and integrated qualitative free-text analysis of a cohort of medical students (n=176) who had already participated in an evaluation before and after Q13. Results: The response rate was 96% after Q13 and 45% after the practical year (PY). Teaching was predominantly perceived as more helpful than the PY (p<0.001). Compared to the status after Q13, students rated themselves as less competent after the PY in all areas surveyed, including drug-based pain therapy (p=0.0386). The certainty in informing patients about the incurability of the disease also decreased significantly after the PY (p=0.0117), although the preparation in Q13 was positively highlighted. Conclusion: The knowledge acquired in Q13 could not be anchored in the PY. On the contrary, after initial practical experiences, the students found it challenging to conduct conversations in cases of serious illness and to deal with their own uncertainty in the care of seriously ill patients. Structural factors regarding palliative care in the PY, as well as intrinsic motives of students, such as prior knowledge or motivation to learn, should be analyzed to identify ways to close the gap between theoretical and practical training in general palliative care. To generate samples that are sufficiently representative, future studies on teaching should be easily accessible to students and consider attractive forms of evaluation including electronic methods and social media.

Are Repeated Self-Reports of Psychological Variables Feasible for Patients Near the End of Life at a Palliative Care Unit?

BACKGROUND: Patient-reported outcome (PRO) measurement is crucial to assess the benefit of psychotherapeutic interventions. Is repeated assessment of psychometric self-report data possible, as inpatient palliative care patients suffer from physical and psychological symptoms? What is the self-perceived strain caused by the assessment? Objective The main objective of this study was to investigate the feasibility of a repeated comprehensive psychometric self-assessment of inpatient palliative care patients. Secondary objectives were the PROs of the psychometric assessment. DESIGN: We conducted a prospective cohort study. Patients admitted to our palliative care unit (PCU) were reviewed for eligibility within 72 hours. They were asked for weekly self-reports regarding hope (HHI-D), well-being (FACIT-Sp), anxiety and depression (STADI), and quality of life (QoL; EORTC-QLQ-C-30 single item). The strain caused by the assessment was assessed by a numeric rating scale (0-10) and free comments. RESULTS: Within 11 months, 219 patients were admitted to the PCU. In total, 92 patients were eligible. The most frequent exclusion criterion was "life expectancy <1 week." A total of 60 patients participated at the first point of measurement. The mean of self-perceived strain (Likert scale 0-10) due to the assessment was 1.44 (SD 1.99) at T1. Twenty-four patients participated twice. Here we found increased scores for physical well-being and QoL. CONCLUSION: Repeated assessment of psychological conditions is feasible for 27.4% of inpatients at a German PCU. The most limiting factor is life expectancy of only days at admission to the PCU. However, the self-perceived strain is low.