The medicalization of ageing has increased reliance on the use of medical treatments to prolong life. However, death represents an inevitable reality, raising important questions about what it means to provide people with a meaningful, quality death. On June 2, 2022, the Harvard China Health Partnership invited Dr. Jun JING, Professor of Social Anthropology at Tsinghua University, to explore this question in the Chinese context at an online event entitled “Meaningful Dying and End of Life Care in China.”
Dr. JING and his collaborators conducted more than 200 interviews with family members and professional caregivers to cancer patients in mainland China. Narratives catalogued during the research process highlight issues beyond a patient’s physical pain— including economic suffering, the burden faced by caregivers, the patient’s mental pain, and the bereavement process for kin—experienced by those involved in episodes of end-of-life care.
Narratives exposed some of the challenges that Chinese people face in receiving care as they age. For example, dependency on care provided by family members is embedded in China’s health and eldercare systems, presenting difficulties for individuals without kin. Dr. JING’s research also suggests that doctors are reluctant to make decisions when providing care at end of life, preferring instead to minimize personal risk by shifting decision-making responsibilities to family members. Access to care is also a challenge given China’s large population and limited medical resources, so patients and their families must sometimes rely on personal relationships to ensure they can obtain the care they need.
In contrast to the United States where most people prefer to die at home, the current policy environment in China makes the choice of where to die more complicated. Dissemination of opioid pain medication is highly restricted outside of hospitals, and hospital inpatient services are reimbursed at higher rates by China’s social health insurance scheme than other types of care. Furthermore, access to palliative care remains severely limited, and Shanghai the only Chinese city whose social insurance program covers palliative care services. At present, patients often continue to pursue treatment rather than enter end of life care programs. Older adults whose children are responsible for care decisions are especially likely to continue receiving intensive medical care, reflecting traditional attitudes of filial piety. There have been increased efforts in China to promote advanced care planning through living wills. Though disagreement still exists about the best implementation approach—codifying requirements into law according to Chinese legalist tradition or respecting patient autonomy—the ultimate goal is to ensure a good death. In China, a good death is increasingly associated with dignity (尊严死).
Dr. JING also highlighted the relational components often involved in the dying process. For example, Chinese families frequently stay in the hospital with their sick family members. Death also presents opportunities for the dying to give back to others through “reverse care.” Designated sites in China are intended to commemorate people who have donated their organs after death. Religious beliefs influence approaches to “reverse care.” Some Buddhists, have chosen to transform their remains into nourishment for animals as a way to promote growth of new life. In the Confucian tradition, individuals are expected to promote family harmony by resolving any outstanding debts or sources of relational discord before death. Daoists believe that people must maintain harmony with nature by limiting consumption of natural resources such as wood and land during the disposition of one’s body after death.
Despite the urgent need to improve end-of-life care in mainland China, Dr. JING urges caution to avoid unintended consequences. For example, palliative care may include end of life care services, but it is not exclusively for older adults or only for the terminally ill. In building out care solutions for individuals in their final stages of life, both policymakers and practitioners broader implications for other groups who may also be able to benefit from these services. Furthermore, palliative care does not generate revenue, and there is already evidence of organizations bundling palliative care services with expensive funeral or burial services to generate revenue. This serves to increase the financial burden on families. As organizations seek new business opportunities, there is also a danger that sites providing palliative care instead become lavish hotels housing rich and powerful suffering from unresponsive wakefulness syndrome.
Event Moderator and Discussant
The event was moderated by Dr. Winnie Yip, Professor of Global Health Policy and Economics at the Harvard T.H. Chan School of Public Health and Faculty Director of the Harvard China Health Partnership; and commentary was provided by Dr. Arthur Kleinman, Esther and Sidney Rabb Professor of Anthropology at Harvard’s Faculty of Arts and Sciences and Professor of Medical Anthropology in Global Health and Social Medicine and Professor of Psychiatry at Harvard Medical School.
- A recording of the event is available here.
- More information about our work on China’s ageing population is available here.
- More information about past events is available here.
- More information on the Social Technology for Global Aging Research Initiative at Harvard that supported Dr. JING’s work is available here.