Background Palliative 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.
Aim To 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.
Design Within the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.
Setting/participants Loved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.
Results 993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.
Conclusions It is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.
Trial registration number This study was registered at the German Clinical Trials Register (DRKS00013916).
- hospital care
- terminal care
- supportive care
- social care
- service evaluation
- quality of life
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Contributors SK: was responsible for data analysis and drafted the manuscript. Being responsible for the overall content as guarantor. JR: took part in data analysis and interpretation, and contributed to the methods and discussion section. ARV: organised the study conduction in Mainz, and contributed to the manuscript (introduction). MW: wrote the grant application and developed the study design, and thoroughly revised the manuscript. SS: cowrote the grant application and developed the study design, thoroughly revised the manuscript. CO: developed the study design, and thoroughly revised the manuscript. MH: took part in the development of the study design, organised study conduction in Erlangen, analysed and interpreted data, and contributed to the manuscript (Results, Discussion sections). Being responsible for the overall content as guarantor. All authors provided critical comments on drafts of the manuscript and approved the final version.
Funding This project was being supported by “Deutsche Forschungsgemeinschaft” (DFG) STI 694/2–1/WE 5613/2–1.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval All ethical issues were addressed. This study was conducted with the approval of the local ethics committees at both institutions (Mainz: Landesärztekammer Rheinland/Pfalz: 837.331.3 (901 6-F F), 3 December 2013; Erlangen: Ethik-Kommission der Medizinischen Fakultät, 14 April 2014).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information. For further questions regarding the reuse of data, please contact the corresponding author (firstname.lastname@example.org).