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 ).

Correction to: The quality of care of the dying in hospital-next-of-kin perspectives.

The surname and name of Christoph (name) Ostgathe (surname) are reversed.

The quality of care of the dying in hospital-next-of-kin perspectives.

PURPOSE: Providing high-quality care for the dying is essential in palliative care. Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin. The objectives of this study are to examine quality of care in the last 2 days of life of hospitalized patients considering specific aspects of their place of care. METHODS: The "Care of the Dying Evaluation" (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin, allocating values between 0 (low quality) and 4 (high quality). The total score (0-104) is divided into subscales which indicate support/time given by doctors/nurses, spiritual/emotional support, information/decision-making, environment, information about the dying process, symptoms, and support at the actual time of death/afterwards. Next-of-kin of patients with an expected death in specialized palliative care units and other wards in two university hospitals between April 2016 and March 2017 were included. RESULTS: Most of the 237 analyzed CODE-GER questionnaires were completed by the patient's spouse (42.6%) or children (40.5%) and 64.1% were female. Patients stayed in hospital for an average of 13.7 days (3-276; SD 21.1). Half of the patients died in a specialized palliative care unit (50.6%). The CODE-GER total score was 85.7 (SD 14.17; 25-104). Subscales were rated significantly better for palliative care units than for other wards. Unsatisfying outcomes were reported in both groups in the subscales for information/decision-making and information about the dying process. CONCLUSION: The overall quality of care for the dying was rated to be good. Improvements of information about the dying process and decision-making are needed. TRIAL REGISTRATION: DRKS00013916.

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.

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.