Overcoming Challenges to Hospice Care in China

BY EVALINE XIE

Lucius Annaeus Seneca, an ancient Roman statesman and Stoic philosopher once wrote in his essay “On the Shortness of Life” that “it takes the whole of life to learn how to live, and […] the whole of life to learn how to die.”¹ As courageously as the Roman Stoics faced death, Seneca illustrates an undeniable fact: even after living a happy life and recognizing and coming to terms with the inevitable brevity of existence, the end of life is a difficult time. Dying, especially as the result of a culmination of a long and painful chronic illness, can be mysterious and unpredictable, lonely and often undignified. The process of dying takes not only an array of medical supplies to alleviate physical pain but also the comforts of companionship, spiritual guidance and emotional support.

To support the elderly and terminally ill with this struggle, modern medicine has developed the concept of hospice, or end-of-life care, a model of health care provided for people who are ill, have a prognosis that is likely to worsen, and will most likely die from their illness.² The idea of hospice care was developed only relatively recently with the opening of the first modern hospice center in 1967 in London by the physician Cicely Saunders. After joining the faculty of the Yale School of Nursing in 1965, Saunders helped inspire the opening of the first American hospice in Branford, Connecticut in 1974.³ Hospice care focuses on compassion, alleviating pain and suffering, and improving quality of life, and it usually involves a team of doctors, nurses, social workers, chaplains, counselors, and volunteers working together with patients. In other words, hospice represents not a particular place or institution but rather a philosophy of care centered around the patient and the patient’s choices. Consequently, it is usually available anywhere, in places as intimate as an individual’s private home or in nursing homes and hospitals.

While hospice care has been available for nearly 50 years, it took time for the practice to gain acceptance in the United States. In some ways, it can feel like giving up on life, surrendering curative treatments in exchange for a death sentence. Although it has recently become more common in the United States, with 1.6 to 1.7 million patients receiving services from hospice in 2014,³ in other countries, such as China, hospice care is still largely unknown or untrusted. According to a study by Susan Enguidanos et al. in 2013 among Asian populations in the U.S., only 11.8% of Chinese-Americans aged 65 and older reported knowing someone who had received hospice care. Even those who had heard of it lacked knowledge of what kinds of services hospice programs provided and other details such as eligibility and insurance coverage.⁴ A 2015 report by The Economist Intelligence Unit evaluated 80 countries on the quality of end-of-life care based on five categories: the palliative and healthcare environment, human resources, the affordability of care, the quality of care, and the level of community engagement. Among the 80 countries, China was ranked 71^st on “Quality of Death,” with its affordability of end-of-life care ranking 65^th and quality of end-of-life care ranking 69^th.⁵

Overall, China has been reluctant to accept and develop hospice care as a healthcare specialty. The country’s first hospice and palliative care facility was not created until 1990, followed three years later by the inauguration of the Chinese Association for Hospice and Palliative Care in 1993 – the first real milestone in the history of Chinese palliative care.⁶ In 1994, the Ministry of Health listed hospice care in the Subject Directory of Diagnosis and Treatment in Medical Institutions for the first time, essentially establishing the field as its own specialty with independent diagnoses and treatments.⁷ Since then, 32 hospices and about 120 palliative care facilities have been created in private and public hospitals throughout China, with most clustered in the highly-populated cities of Shanghai, Beijing, and Chengdu.⁵ These facilities have been supported primarily by philanthropists such as Li Jiacheng, who developed a foundation to support the development of hospice units.⁶ Despite all these advances, however, hospice in China is still very much an emerging specialty.

While services lag behind those of other countries, hospice care is needed in China more than ever. China’s population is not only the largest in the world, with about 1.37 billion people as of 2013, but also one of the most skewed demographically. Due to the one-child policy instated in the country for almost thirty years, the proportion of elderly people over sixty years of age is projected to rise to 30% of the entire population by 2050, while the elderly dependency ratio is projected to rise from the current 11% to 38%.⁸ In other words, there may be in the next thirty years a large portion of the Chinese population in need of significant amounts of daily care and a much smaller proportion of younger relatives able to provide it.

What, then, has prevented the faster growth of China’s hospice services? A large obstacle currently facing its expansion simply derives from a lack of standardization, regulation, and professionalism. Given how it draws from multiple disciplines, from medicine and nursing to philosophy, psychology, and the arts, hospice care programs require large numbers of well-trained, dedicated personnel from all areas in order to be successful. China’s hospice care currently suffers from shortages in both quantity and quality of healthcare professionals. These shortages can partially be explained by the Chinese government’s lack of support for hospice and palliative care. Currently, the national health security system does not generally provide any government subsidies for palliative care, making it difficult for individuals to fund their own care.⁵ For example, the treatment of cancer, one of the three primary causes of death in China,⁹ costs about 300,000 Yuan (50,000 USD), while the annual per capita income in China is about 7,000 USD.⁷ Even at Songtang Hospice in Beijing, one of the country’s earliest palliative care institutions providing care with relatively low costs (an average of 1,000-2,000 RMB, or $126-320 per month), patients struggle to afford their care.⁵

The most significant challenge to expanding China’s hospice care, however, is the general attitude towards hospice itself, which is rooted in traditional Confucian values that have pervaded Chinese culture for thousands of years. In traditional Chinese culture, the family not only serves a social unit but also embodies the values and ideology of Chinese society as a whole. Filial piety, a sense of duty, respect, obedience, and obligation towards one’s parents and elderly family members, represents the foundation of the family. The character xiao 孝 consists of two parts. Pictorially analogous to a compound word in English, the top half of the character is the character lao 老, meaning “old,” and the bottom half zi 子, or “son.” In a remarkably concise, simple way, the character expresses the idea that children support the elderly, a weighty responsibility on their shoulders. It also demonstrates the strict hierarchy of family structure, where older generations have significant power over younger generations, who must show obedience and respect to their elders.

Simultaneously, death itself is taboo in Chinese culture. Chinese culture reinforces the idea that anything associated with death brings ill fortune. As a result, people strongly avoid discussing death openly, even in medical contexts, where family members of patients often believe that telling the patient an unfavorable prognosis will weaken his strength and spirits, only making his condition worse or even driving him closer to death. Instead, believing that they are fulfilling their responsibility for filial piety, family members tend to push for additional intensive treatment to continue the patient’s life, even in cases of terminal illness, claiming “where there is life, there is treatment.”⁷

Unsurprisingly then, much of the population holds distrust towards hospice and palliative care, interpreting hospice care as a surrender to death, with patients receiving care simply waiting to die. If a patient with late-stage cancer is admitted into a hospital, for example, family members will often ask doctors to treat the illness at all costs, even if treatment at that point has become futile and may, in fact, only cause more physical and emotional suffering.⁶ The alternative, allowing the parent to die by removing life support or giving up on curative treatment, is viewed as disgraceful, a disregard for filial piety.¹⁰ Even the presence of a hospice or palliative care center is looked down upon. For example, Song Tang Hospice, the first palliative care facility in China, has changed locations seven times since its initial establishment in West Beijing in 1987 due to complaints from nearby residents who thought it was a hospital for the dying, bringing calamity to their lives.⁷

How do these cultural differences impact medical care in practice? A 2004 survey of sixty different oncology clinicians in Chinese cities by Dr. Xin Wang and others may illustrate how an end-of-life care experience in a Chinese cancer treatment center may differ from one in the West. First, it is unlikely (only 43% of respondents) that a cancer patient in one of these urban hospitals would have access to a hospital-based hospice service, and it is even less likely (only 13% of respondents) that a home-hospice service would be available. ¹¹By comparison, as of 2014, there were 4,000 hospice care agencies in the United States, and 67% of hospitals with fifty or more beds reported having palliative and hospice care teams.¹² As far as managing symptoms, although most clinicians deem themselves to be highly competent in managing patient’s pain, only about 40% report using standard pain assessment scales in practice. Furthermore, most physicians judge themselves to be incapable of managing their patients’ depression and other psychological issues during the last six months of life. As for communication between clinicians and patients, although a majority of physicians believe that patients should know their cancer diagnosis and prognosis, including when terminal, 70% believe that most families do not actually want their patients to know the truth. As a result, clinicians in these Chinese cancer treatment facilities are mixed in their practice of disclosing terminal prognoses: two thirds report that they would tell the truth when patients requested it directly, and 10% would never tell the patients their terminal condition. The main reason they cite is that informing patients about the nature of their illness would cause depression – aligning with the cultural belief that talking about death brings ill-fortune, weakening a patient’s spirit and morale and thus worsening his condition. This is a common trend among Asian countries in general, in which physicians are much more likely to withhold unpleasant prognoses from patients at the family’s request.¹¹ This diverges greatly from the models of end-of-life care that are now most prevalent in Western countries such as the United States, which emphasize the patient’s autonomy and right make decisions about what is important to them at the end of life and how they wish to pursue treatment, if any.

So how can hospice care in China move forward? Perhaps the most important obstacle to be solved is the lack of education and training, both among healthcare professionals providing hospice care and the general population receiving it. Doctors, nurses, and volunteers need standardized palliative and hospice care curricula in order to understand the in-depth medical knowledge needed for appropriate care and drug use, including knowledge on the benefits of hospice care, when to transition from curative treatments to hospice, and how to communicate these options informatively for patients. On the other hand, while changing public opinion is challenging, public health education about the advantages of hospice care should be provided to patients and families. The philosophies behind filial piety and hospice are not entirely divergent and can be reconciled with enough physician sensitivity. Both are concerned first and foremost with the patient and his or her needs; providing comfort and compassion at the end of life can be framed as just as much a fulfillment of filial duty as curative treatments. As the ancient Roman philosopher and statesman Seneca said, it may take our whole lives to learn how to approach the end of life, so there is truly no time like the present to begin learning.

__________

References:

1. Seneca, Lucius Annaeus (1932). Moral Essays, Volume II: De Consolatione ad Marciam. De Vita Beata. De Otio. De Tranquillitate Animi. De Brevitate Vitae. De Consolatione ad Polybium. De Consolatione ad Helviam. Translated by John W. Basore. Loeb Classical Library 254. Cambridge, MA: Harvard UP, 1932.
2. Colello, K.J., Mulvey, J., Sarata, A.K., Williams, E.D., & Thomas, K.R. (2009). End-of-Life Care: Services, Cost, and Quality of Care (CRS Report No. R40235). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3698717/.

3. National Hospice and Palliative Care Organization. (n.d.). History of Hospice Care. Retrieved from http://www.nhpco.org/history-hospice-care
4. Enguidanos, S., Yonashiro-Cho, J., & Cote, S. (2013). Knowledge and Perceptions of Hospice Care of Chinese Older Adults. Journal Of The American Geriatrics Society, 61(6), 993-998.
5. Economist Intelligence Unit. 2015. “The 2015 Quality of Death Index: Ranking palliative care across the world.” London: The Economist.
6. Wu, Y., Li, L., Su, H., Yao, X., & Wen, M. (2016). Hospice and Palliative Care: Development and Challenges in China. Clinical Journal of Oncology Nursing, 20(1), E16-E19.
7. Peng, D., & Yongmei, W. (2016). Development of Hospice Care Service for the Elderly in China. Development and Society,45(2), 275-295.
8. Zhou, Y. (2016). Care Issues at the End-of-Life in China. Development and Society, 45(2), 231-254.
9. Wei, Z.H., & Gao, Y.L. (2009). Death analysis on heart and cerebrovascular diseases of the residents in Beijing. Journal of Cardiovascular and Pulmonary Diseases, 28, 377–380.

10. Barclay, J. S., Blackhall, L. J., & Tulsky, J. A. (2007). Communication Strategies and Cultural Issues in the Delivery of Bad News. Journal of Palliative Medicine,10(4), 958-977.
11. Wang, X. S., Di, L. J., Reyes-Gibby, C. C., Guo, H., Liu, S. J., & Cleeland, C. S. (2004). End-of-life care in urban areas of China: A survey of 60 oncology clinicians. Journal of Pain and Symptom Management,27(2), 125-132.
12. Centers for Disease Control and Prevention. (2016, July 06). Hospice Care. Retrieved from https://www.cdc.gov/nchs/fastats/hospice-care.htm.