The quality of care of the dying in hospital—next-of-kin perspectives
Open Access
- 9 May 2020
- journal article
- research article
- Published by Springer Science and Business Media LLC in Supportive Care in Cancer
- Vol. 28 (9), 4527-4537
- https://doi.org/10.1007/s00520-020-05465-2
Abstract
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 DRKS00013916Funding Information
- Deutsche Forschungsgemeinschaft (STI 6942-1, WE 561312-1)
This publication has 29 references indexed in Scilit:
- The relatives’ perspective on advanced cancer care in Denmark. A cross-sectional surveySupportive Care in Cancer, 2012
- Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and SpainAnnals of Oncology, 2012
- Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesisPalliative Medicine, 2011
- Review: The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative researchPalliative Medicine, 2010
- Reliability testing of the FAMCARE-2 scale: measuring family carer satisfaction with palliative carePalliative Medicine, 2010
- Meeting the Supportive Needs of Family Caregivers in Palliative Care: Challenges for Health ProfessionalsJournal of Palliative Medicine, 2004
- A Measure of the Quality of Dying and Death: Initial Validation Using After-Death Interviews with Family MembersJournal of Pain and Symptom Management, 2002
- Family Reports of Dying Patients' Distress: The Adaptation of a Research Tool to Assess Global Symptom Distress in the Last Week of LifeJournal of Pain and Symptom Management, 2001
- Place of Care in Advanced Cancer: A Qualitative Systematic Literature Review of Patient PreferencesJournal of Palliative Medicine, 2000
- The informational needs of patients with cancer and their families.Cancer Practice, 1998