Paper short abstract:

Adult children are the primary decision-makers in end-of-life care in China, with options limited by Chinese culture and policies. Views of end-of-life care are changing as new generations confront what it means to be a filial China as new care models emerge and family dynamics change.

Paper long abstract:

Filial piety is a key moral virtue and central to the Chinese identity. Ancestors were once worshipped and had power to influence the fortunes of the living. What does this mean to those approaching the end of life in China today, after the turmoil of Mao's revolution, three decades of reform and breakneck economic growth, and a rapidly aging society where most families have been allowed only one or two children? Interviews and observations with medical staff, families, patients, and officials in Shanxi province reveal that end-of-life care in China is riddled with challenges and contractions. Considering the dying as ancestors highlights the changing role of elders in Chinese society, as families navigate changing policies, new wealth, and altered family structures. While the government increasingly throws resources at healthcare and old-age care, little assistance is available in the end of life. Hospitals fear the wrath of families of patients who die in hospitals, and children fear being seen as unfilial. The dying are not told they are dying, and have little say in care decisions. People express dissatisfaction with this state of affairs, but also a sense of being trapped by family, by culture, and by a simple lack of options. Even as people try to find the problem in the core of Chinese ethnicity and culture, these narratives reveal that the Chinese culture is embedded in ever-emerging historical circumstances. New policies, family structures, and moralities will continue to change end-of-life care for each successive generation.