End-of-Life Needs of Dying Patients and Their Families in Mainland China: A Systematic Review

Abstract

Objective To map the current research status and understand existing findings regarding end-of-life care needs in Mainland China. Method First-hand, empirical studies on the needs of dying patients and/or their families in Mainland China were searched in Web of Science, Scopus, Proquest, Taylor & Francis Online and CNKI in December 2019. Findings were synthesized. Results A total of 33 (10 qualitative) studies were involved. Chinese dying patients and their families had physical, psychological, social, and spiritual needs and needs for knowledge and information. Prevalent needs of dying patients were mainly symptom control and decent look, being treated kindly by professional caregivers, family accompany, dignity, and comfortable environment. Families mainly need healthcare professionals to take good care of patients and wishes for information, knowledge, and facilities to help themselves become better caregivers. Conclusions Findings lay the foundation for effective and tailored services for Chinese clients and provided insights for future investigations.

Influencing factors of home hospice care needs of family caregivers of the older adult with chronic diseases at the end of life in China: a cross-sectional study

“…Thirdly, emotional regulation was also identified as a high need in this study, of which the item of regulating the emotion of fear and sadness was the most important, indicating that the fear and helplessness of the family members increase significantly during the dying period and when the patient's condition deteriorates ( 16 ). During the implementation of home hospice care, healthcare professionals should pay attention to the psychological state of family caregivers, provide them with timely psychological support, guide them to cope with negative emotions and establish the correct confidence in caregiving.…”

“…In contrast, the development of home hospice care in China has been slow, and research on needs is very limited. Distinct cultural and religious convictions significantly influence hospice needs and the process of making end-of-life decisions ( 15 , 16 ). Thus, it is necessary to further explore the needs of Chinese family caregivers for home hospice care.…”

Predicting death quality from life prior to death among older Chinese in a retrospective cohort study

“…Additionally, to “die well” is increasingly considered crucial in aging societies ( 5 – 7 ). Quality markers of a good death identified in empirical studies include freedom from pain or discomfort, being conscious and alert, and feeling dignified and prepared, among others ( 1 , 3 , 5 , 8 ). So far, much end-of-life research has centered on patients diagnosed with terminal illnesses ( 2 , 9 ).…”

Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: a meta-synthesis of qualitative and quantitative studies

“…Prior to this review, there were two systematic reviews on the needs of dying patients and their caregivers, published in March 11 and February 2021 12 ; however, these reviews used different methods, search sources and study populations compared with the current review. One review 11 did not exclusively include studies that focus on care needs and included studies conducted in Greater China (including mainland).…”

“…Because of the differences in the development of hospice care as well as familiarity with and acceptance of hospice and palliative care, results obtained from Hong Kong, Macao and Taiwan may differ from those from the mainland. The other review 12 used different methods for the theoretical framework, screening, study evaluation, and result synthesis. In this review, we used the Joanna Briggs Institute (JBI) methodology for mixed-methods systematic reviews 13 and evaluated the studies using standardised critical appraisal instruments.…”