Palliative Medicine | 2019
Hospice and palliative care research in mainland China: Current status and future direction
Abstract
Hospice care emerged in mainland China in 1988, 30 years ago, but its development since that time has been slow. In 1994, the Ministry of Health listed hospice care into the Catalogue of Diagnostic and Therapeutic Subjects of Medical Institutions,1 but the public’s awareness of hospice and palliative care and the supply of it are still limited. Large numbers of people still die in acute hospitals. In recent years, hospice and palliative care has witnessed rapid development: in February 2017, the State Health Planning Commission issued a guideline2 for hospice care, which began to promote the work of hospice care nationwide. In May of 2019, the second batch of national pilot work on hospice care were chosen, 71 regions including whole area of Shanghai are being involved in developing local hospice care service. In parallel to this clinical expansion, palliative care research in mainland China has also been developing. A brief retrospective analysis of Chinese literature shows that since 1989, the number of documents indexed by hospice care as a key word has been increasing.3 The growth of related literature can be divided into three periods: 1989–1991 as an initial period, where the increase of the number of documents is slow; 1992-2000 as a period of steady development, with around 50 articles a year published; and after 2001, the number of articles published has increased rapidly, reaching 300 articles per year by 2016.4 There are about 2500 articles published in Chinese journals and about 70 articles published in English language journals by Chinese contributors in the last 10 years. The number of articles published in domestic journals is clearly higher than that in foreign journals. The main reason for this is likely to be a language barrier, with authors not having sufficiently strong English to easily submit articles to English language journals. Another reason may be that current palliative care research in China is not methodologically sufficiently strong to meet the requirements of English language journals. This is a circular problem: the possibility of Chinese scholars communicating with and learning from scholars from elsewhere is reduced if there is not a shared language. Scholars elsewhere are unaware of, and cannot cooperate with or contribute to, research within China. China, as a large developing country, has lost an opportunity to share her experience with the world in the field of hospice and palliative care. Within China, developments are also required in publishing hospice and palliative care research. The Chinese journals that mostly publish hospice and palliative care research include Chinese Medical Ethics, followed by Medicine and Philosophy, World Latest Medicine Information and Chinese Nursing Research. However, only some of these journals are in the list of the key journals of ‘China technology’, which is the most authoritative catalogue of sci-tech journals in China, entrusted by the Ministry of Science and Technology. Palliative and hospice care research knowledge is also concentrated in a few scholars and institutions. Over the past 10 years, 26 authors are large volume publishers in this field (more than 10 articles4), but there is little cooperation between these institutions.3 This is an issue because of the size, geography and variability of healthcare and other customs and policies across China, where national research is challenging. Palliative care research published in mainland China in the last decade address topics of staffing, nursing models, ethics, psychological care, and the social background of hospice care such as population ageing. The content of the articles also includes awareness of terminal care and its influencing factors in different groups of people: cancer patients, nurses, the elderly person, medical students, and a small amount of literature about the family members of patients, people’s understanding of life and death, psychological status and quality of life of cancer patients. These topics are not dissimilar to those that are common in English language journals – there are clearly common interests and concerns. Most hospice and palliative care papers in the last decade from mainland China have been authored by nurses. In the near future, it is not only nursing staff but also doctors and other members of the multi-disciplinary team who need to be actively involved in research in hospice and palliative care, especially in departments with many end-stage patients, such as geriatrics, oncology, emergency departments and intensive care. Many current studies are smallscale comparative studies on end-stage cancer patients to confirm that hospice care, which provides a comfortable environment for end-stage patients, improves symptoms and pays attention to psychology can better improve the condition of end-stage patients than conventional nursing care. In mainland China, full communication, empathy and caring for patients’ physical, psychological, spiritual and 857495 PMJ0010.1177/0269216319857495Palliative MedicineEditorial editorial2019