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

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 DRKS00013916 Electronic supplementary material The online version of this article (10.1007/s00520-020-05465-2) contains supplementary material, which is available to authorized users.

Dying in hospital is worse for non‐cancer patients. A regional cross‐sectional survey of bereaved relatives' views

“…Consistent with the other findings, we also found that informants who cared for non-cancer patients are less likely to feel fully supported and informed (Burt et al, 2010). The need for improvements in information giving about the dying process and decision-making were already identified in a previous research (Heckel et al, 2020;Virdun et al, 2015).…”

“…Most of the cancer patients and a little more than half of non‐cancer patients had their religious/spiritual wishes fulfilled. The low response rate may be an indication of different definitions of spirituality or religiousness (Edwards et al, 2010; Heckel et al, 2020). A strong difference is also found in emotional care provided, in which predominantly cancer patients have received effective support.…”

Hospital patients’ perspectives on what is essential to enable optimal palliative care: A qualitative study

“…6,17,19,20 however, there is persisting evidence that optimal inpatient palliative care is not always provided. 10,[21][22][23][24][25] The reasons for this are both varied and complex, 21 but largely relate to ineffective communication, too little input into decision making and poor symptom management. 6,10,[26][27][28] A recent systematic review and metasynthesis identified 15 key domains of importance ('domains') for optimal hospital-based palliative care, from the perspectives of inpatients and carers 8,9 including: expert care (inclusive of physical care, symptom management and integrated care), optimal communication, respectful and compassionate care, valued family involvement in care planning and delivery, maintenance of self-identity for patients, environmental privacy for families, ensuring patient safety, supporting patient choices, preparing families for death and providing contact for families after a patient has died.…”

“…6,17,19,20 however, there is persisting evidence that optimal inpatient palliative care is not always provided. 10,21–25 The reasons for this are both varied and complex, 21 but largely relate to ineffective communication, too little input into decision making and poor symptom management. 6,10,26–28…”

Strengthening palliative care in the hospital setting: a codesign study

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