In this study, we attempted to provide an overall assessment of research and publications related to HPC in Mainland China over a 10-year period. During that time, both the production and impacts of the publications increased; however, regional disparities were conspicuous. There was also a lack of a discussion of some important areas of HPC.
Growing out of infancy
The first hospice in Mainland China was founded in the municipal city of Tianjin in 1988[26]. But the adoption of HPC in Mainland China has been slow. Even among health professionals, there is still insufficient knowledge of the subject [27]. However, the present study found that the number of HPC-related publications in 2019 was almost three times that in 2010. The exponential rise of the production and impacts of HPC-related publications is a sign of academic attention and discussion, which are vital for professional education as well as research innovation. In our opinion, this trend will lead HPC in Mainland China out of its infancy.
There are several reasons for the growth. According to the 2010 and 2015 Quality of Death Index by the Economist Intelligence Unit, China is among the countries with the lowest rank [2, 3]. All three countries with a lower ranking than China in 2010 surpassed it in 2015. This was widely covered by Chinese media and elicited broad discussion, stimulating health-care workers and policy makers to reexamine the medical system and service. At the same time, a series of new policies prompted the promotion of knowledge about HPC. For example, community care, which burst as a key word in 2015, has been promoted by the government since 2012. The burst detection also showed a promising shift of key words from main concepts to practical issues, such as pain management and negative emotions, which may lead to more clinically relevant research.
Despite its growth, research into HPC in Mainland China remains at an early stage. First, the number of high-quality publications per million inhabitants is meager compared with other parts of Asia [19]. Second, a large number of those publications are secondary literature, which introduces ideas and knowledge but does not explore the unknown. Third, HPC for non-cancer patients is far less discussed than for cancer patients, and end-of-life care or hospice receives greater attention than integrated palliative care in an early stage. Thus, many professionals may be unaware of the latest concept of palliative care [28]. Fourth, there is still no specialized HPC journal in Mainland China. It hinders the development of the academic community of HPC professionals. Accordingly, policies should be designed to support original research, education, and publications in HPC.
Conspicuous regional disparity
Imbalanced development in China has long been recognized—especially between East and Western China [29]. This inequality is evident in many areas, including the economy, human capital, public facilities, and science and innovation. Studies have observed that economic factors are closely linked to a country’s production of HPC-related publications [30]. We found that relationship also applies on a provincial scale. When residents in less prosperous regions have limited access to curative medicine [31], an insufficient HPC service will close the door to relief. Thus, the regional disparity in research and publications is both a result and a component of that imbalance, which would produce the Matthew effect and cause inequity in HPC.
China’s great cultural richness warrants more research in different regions and populations. Chinese attitudes toward death are heterogeneous. One study among Christians in a northern rural region of China determined that 95% could freely talk about death at home; 85% felt joyful when thinking about death [32]. That finding is against the stereotype of Chinese people. Another study from urban areas showed that older people were more willing to die in hospital than younger ones [33]; that is also against the stereotype of the elderly. Owing to different cultural and social factors, patients’ attitudes to HPC varied from hostility to embracing the approach [34, 35]. Some regions with fewest publications (such as Tibet, Hainan, Xinjiang, and Inner Mongolia) are home to various ethnic groups. Thus, in a rapidly changing, culture-rich society, we believe that more research is needed to understand local needs and promote culture-sensitive care.
Call for collaboration
The study identified a lack of collaboration at different levels. From the names of journals publishing HPC-related articles, nurses, general practitioners, and geriatricians are especially active in this field. However, researchers from other specialties, such as emergency medicine and intensive care, were scarce. Nurses have done excellent work in HPC research. However, in Mainland China, nurses are not allowed to prescribe medications, which compromises their ability to conduct intervention studies. More doctors from different specialties, nutritionists, physical therapists, psychologists, social workers, and other related professionals should be involved in multidisciplinary HPC research.
At the institutional level, the hospice providers in the first five pilot regions had no collaboration with leading universities in their publications. HPC is highly practical, so we strongly recommend collaboration between HPC providers and professional researchers. Future policies and funding should support this collaboration.
International collaboration is also important for HPC practitioners and researchers in Mainland China: they should seize opportunities to communicate with researchers from the rest of the world, especially other Asian regions. Overall, collaboration is the way to make more people heard.
Strengths and limitations
To our knowledge, this is the first study that provides a whole picture of HPC-related research and publications in Mainland China. Our study has several limitations. First, the terminology for HPC in Mandarin Chinese is not unified, and so we included various versions. We may have missed articles that did not mention those terms. Second, it was difficult to determine the actual quality of an article. We used the quality of the publishing journal as a substitute for the quality of the article. However, a high-quality article can be published in a non-core journal [36]. Third, some excellent HPC centers dedicated themselves to delivering care rather than research. Their efforts were largely invisible in our study. Future investigations should aim to determine the factors that hinder or promote research in HPC.