Current awareness of palliative care in China

Abstract

Palliative care was introduced in China with the establishment of a hospice care research centre in Tianjin municipality in 1988. However, in a culture in which discussing death remains taboo, public education on death and dying has been scarce. Families of patients with terminal illnesses often feel pressure to opt for life-prolonging care. As such, palliative care has developed slowly in China, with the Economist Intelligence Unit ranking China 71 of 80 countries on palliative care in 2015.1The Economist Intelligence UnitThe 2015 Quality of Death Index—Ranking palliative care across the world.https://eiuperspectives.economist.com/healthcare/2015-quality-death-indexDate accessed: August 10, 2019Google Scholar With a population of approximately 1·4 billion, China had more than 150 million people aged 65 years or older in 2018, accounting for 10·9% of the total population.2The World BankPopulation ages 65 and above (% of total population)—China.https://data.worldbank.org/indicator/SP.POP.65UP.TO.ZS?locations=CNDate accessed: January 19, 2020Google Scholar Along with cardiovascular diseases, cancer is now a leading cause of death in the rapidly ageing country,3Zhou M Wang H Zhu J et al.Cause-specific mortality for 240 causes in China during 1990–2013: a systematic subnational analysis for the Global Burden of Disease Study 2013.Lancet. 2016; 387: 251-272Summary Full Text Full Text PDF PubMed Scopus (747) Google Scholar forcing China's health-care system to transition from acute to chronic care. Responding to strong social demand to improve quality of life for patients needing end-of-life care, the Chinese Government issued practice guidelines for hospice care in 2017,4National Health and Family Planning Commission of The People's Republic of ChinaNotice of the General Office of the National Health and Family Planning Commission on printing and distributing the practice guidelines for hospice care (Trial).http://www.nhc.gov.cn/yzygj/s3593/201702/3ec857f8c4a244e69b233ce2f5f270b3.shtmlDate accessed: May 19, 2019Google Scholar selecting pilot areas to promote hospice service. Second-round programming in 2019, saw 71 additional areas chosen, including Shanghai, promoting hospice service in all of its community health centres.5National Health Commission of The People's Republic of ChinaNotice of the General Office of the National Health Commission on the second batch of pilot program on hospice care.http://www.nhc.gov.cn/cms-search/xxgk/getManuscriptXxgk.htm?id=efe3ed3d9dce4f519bc7bba7997b59d8Date accessed: December 12, 2019Google Scholar Despite this progress, palliative care in China continues to face significant barriers, including insufficient educational and training resources, absence of legal frameworks to support patient autonomy, insufficient funding and resources to establish palliative care teams, insufficient pharmaceutical supplies, significant regional economic disparity, and a dearth of research regarding views towards death in the rapidly changing society.6Hu K Feng D Barriers in palliative care in China.Lancet. 2016; 3871272Summary Full Text Full Text PDF PubMed Scopus (19) Google Scholar Despite increased studies on public awareness of palliative care internationally, previous studies7Tang L Fritzsche K Leonhart R et al.Emotional distress and dysfunctional illness perception are associated with low mental and physical quality of life in Chinese breast cancer patients.Health Qual Life Outcomes. 2017; 15: 231Crossref PubMed Scopus (21) Google Scholar in China have been limited to specific topics, including advance directives, advance care planning, and psycho-oncology. To progress this under-researched field, we did a cross-sectional online questionnaire survey study from Dec 27, 2018, to Jan 5, 2019, quantifying current awareness of palliative care among patients, and identifying associated demographic factors, which might facilitate future interventions. Patients were recruited from 52 online breast cancer patient associations with a total of approximately 26 000 members across China. We limited our study to patients with breast cancer because this patient group typically has higher 5-year survival rates and might have potentially higher engagement with sensitive topics of death and dying. All participants were aware of their diagnoses, but not necessarily the stage or other clinical details (appendix). 549 (2·1%) patients returned completed electronic surveys; respondents were from all provinces, provincial-level municipalities, and autonomous regions, except Tianjin municipality, Hong Kong and Macau Special Administrative Regions, and Taiwan. Basic characteristics of the study population are described in the table. 546 (99%) respondents were women; 267 (49%) were aged 40–49 years; 392 (71%) reported living in an urban area; 251 (46%) reported college education or higher; 381 (69%) reported being non-religious; 404 (74%) reported an annual household income of less than ¥100 000 (approximately US$14 725); and 29 (5%) were medical professionals.TableBasic characteristics of study population and awareness of palliative careStudy population (N=549)Awareness of palliative careχ2 (p value)YesNo, but willing to learn moreNo, and not interestedOverall549 (100%)68/549 (12%)326/549 (59%)155/549 (28%)..Sex........0·807Female546 (99%)68/546 (12%)324/546 (59%)154/546 (28%)..Male3 (1%)0/3 (0%)2/3 (67%)1/3 (33%)..Age, years........0·235<4094 (17%)17/94 (18%)47/94 (50%)30/94 (32%)..40–49267 (49%)28/267 (10%)164/267 (61%)75/267 (28%)..≥50188 (34%)23/188 (12%)115/188 (61%)50/188 (26·6%)..Residence........0·124Rural157 (29%)17/157 (11%)86/157 (55%)54/157 (34%)..Urban392 (71%)51/392 (13%)240/392 (61%)101/392 (26%)..Education........0·0001High school and lower298 (54%)26/298 (9%)168/298 (56%)104/298 (35%)..College and higher251 (46%)42/251 (17%)158/251 (63%)51/251 (20%)..Religious........0·207No381 (69%)48/381 (13%)234/381 (61%)99/381 (26%)..Yes168 (31%)20/168 (12%)92/168 (55%)56/168 (33%)..Annual household income........<0·0001<¥100 000 (US$14 725)*US$100 equated to ¥679·12 (Bank of China; May 12, 2019; 1030 h; middle rate).404 (74%)41/404 (10%)233/404 (58%)130/404 (32%)..¥100 000–250 000 (US$14 725–36 812)117 (21%)16/117 (14%)76/117 (65%)25/117 (21%)..>¥250 000 (US$36 812)28 (5%)11/28 (39%)17/28 (61%)0/28 (0%)..Medical professional........0·029No520 (95%)60/520 (12%)310/520 (60%)150/520 (28·8%)..Yes29 (5%)8/29 (28%)16/29 (55%)5/29 (17%)..Method of informing diagnosis........0·534By doctor directly337 (61%)42/337 (12%)198/337 (59%)97/337 (29%)..By doctor through family members58 (11%)10/58 (17%)30/58 (52%)18/58 (31%)..Under other situations154 (28%)16/154 (10%)98/154 (64%)40/154 (26%)..Preferred place of death........0·207At home355 (65%)41/355 (12%)214/355 (60%)100/355 (28%)..In hospital109 (20%)10/109 (9%)67/109 (61%)32/109 (29%)..Not reported or other85 (15%)17/85 (20%)45/85 (53%)23/85 (27%)..Data are n (%) or n/n (%).* US$100 equated to ¥679·12 (Bank of China; May 12, 2019; 1030 h; middle rate). Open table in a new tab Data are n (%) or n/n (%). Of 549 respondents, 68 (12%) reported previous awareness of palliative care (translated to huan-he-yi-liao in Chinese). Of the 481 respondents who denied previous awareness, 326 (68%) reported interest in learning more after reading a brief WHO definition. Education level (p=0·0001), household income (p<0·0001), and being a medical professional (p=0·029) were significantly associated with previous awareness of palliative care. 355 (65%) reported choosing home to be their place of death (table). Despite a low awareness of palliative care, the majority of respondents without previous knowledge desired more information, suggesting that public health education efforts are urgently needed. Because higher education and household income were significantly correlated with awareness of palliative care, and considering China's large population, public health education via mass media targeting people in lower socioeconomic strata might be most effective. Regarding methods of informing diagnosis, 337 (61%) respondents received a cancer diagnosis directly from their doctor; the rest were informed through family members or other means. The typical practice regarding conveying a cancer diagnosis is to inform patients' families, who then decide what information the patient receives. 465 (85%) patients preferred being informed, whereas the rest believed it would have been better not to know the truth (appendix). These findings suggest that optimal strategies on how to inform diagnoses, while ensuring patient autonomy, remain controversial. In China, medical education and clinical training has focused on disease pathophysiology and treatment. Even among the 29 respondents who were medical professionals, only a quarter had knowledge of palliative care. In addition, we observed no significant difference in awareness of palliative care between patients whose diagnosis was conveyed by their doctor directly versus patients informed via other methods. These findings suggest that health-care providers in China might be unfamiliar with palliative care options or reluctant to broach palliative care topics. Training programmes for health-care providers regarding availability and appropriate use of palliative care are needed. This study has several limitations. First, because the proportion of responses was small and limited to patients with breast cancer, most of whom were women, the sample might not fully represent other cancer types with potentially higher demand for palliative care, or reflect salient sex differences in awareness of palliative care. Second, because this survey was administered via online breast cancer patient associations, respondents required internet capabilities, possibly limiting our responses to younger patients and those in higher socioeconomic (and urban) strata. Finally, our questionnaire was not designed to explore the depth to which respondents understood palliative care concepts. Future studies incorporating sex, disease, and socioeconomic distribution are urgently needed; until then, we anticipate that raising awareness of palliative care and conveying accurate ideas to the public will remain challenging in China. With an ageing population and increased incidence of cancer and other chronic diseases, China will struggle to meet the country's demand for palliative care. Our findings provide strong evidence for an urgent need for palliative care advocacy in China—to improve patient awareness, ameliorate accessibility of services, and ensure proper training for health-care providers. The authors declare no competing interests. YY and HZ contributed equally. The authors thank Kristin Thurlby (Johnson County Community College, Overland Park, KS, USA) for her editorial advice on preparation of this Correspondence. Download .pdf (.34 MB) Help with pdf files Supplementary appendix

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