Special Section: Palliative Care
DISCUSSING THE UNSPEAKABLE: SERIOUS ILLNESS WITH AGING CHINESE PATIENTS Esther J. Luo, MD; Sandy Chen Stokes, RN, MSN and Deborah A. Szeto, MSN, RN, CCRN Discussing serious illness with aging Chinese patients is no easy task. Through this article, we hope to highlight key concepts in the Chinese culture, offer strategies to engage Chinese patients in advance care planning (ACP), and provide specific resources to promote further discussion among providers, patients, and families.
The Chinese Family Structure
Traditionally, the Chinese family has clear roles and responsibilities. According to Confucian thinking, three of the five important relationships are focused on the family. These include husband and wife, parent and child, and elder and younger siblings. The parents provide clothes, food, and shelter for the children. In return, the children are expected to be obedient to their parents including caring for them as they age. In addition to these clearly defined roles, the Chinese family also has a collective identity.1 For example, an individual’s accomplishments bring pride and glory to the family name, while the mistake or misfortune of one individual will bring shame to the entire family. Lastly, the interests of the family supersede the interests of the individual.2
Filial Piety
In the Chinese culture, filial piety is one of the most important virtues, as illustrated in one of the most famous Chinese sayings, “Of all virtues, filial piety is the first” (百善孝為先). It is also a pillar of the traditional Chinese family structure, rooted in the principles of hierarchy, obligation, and obedience. To be filial is to respect one’s parents, elders, and ancestors. In the context of serious illness, filial piety also plays an important role in medical decision-making, ACP, and end-of-life care.3 When an elderly Chinese patient is diagnosed with a serious illness such as advanced cancer, the children are oftentimes involved in the medical decision-making process. Typically, the children’s desire is to protect the parent from the psychological burden of a serious diagnosis so that the parent will not lose hope and give up on life. Furthermore, the parent living with the illness may frequently defer medical decision-making responsibility to that of the children.4 24
Filial piety can also influence ACP. Naturally, the children of aging Chinese parents will want to fulfill their filial responsibilities of caring for their elders. Thus, the importance of understanding their parents’ values, goals, and medical wishes is paramount. In the Chinese family, adult children are often appointed as the health care agent and the medical decision-making process is family-based rather than individual-based. It may be helpful for parents to role model and start the discussion knowing this topic may be difficult for the adult children to initiate on their own. As children, initiating this type of discussion can help them understand what matters the most for their parents so that the children can take better care of their parents. Lastly, filial piety plays a role at the end of life. One study conducted in Taiwan on patients’ preference of death indicated that greater than 90% of study participants did not want to be a burden for the family.5 At the end of life, ways in which filial piety is exhibited include the practical help that can be provided as well as making medical decisions related to forgoing life support, discussion about hospice, making sure care is focused on comfort and alleviating suffering.
Strategies to Engage Chinese Patients in ACP
Providers should be willing to use creative strategies to engage Chinese patients in ACP. It may be helpful to frame ACP differently, with less focus on autonomy and more as a way to reduce family disharmony or burden while also promoting filial piety.6 Some Chinese patients may be averse to more formal or structured conversations and may prefer to use more indirect methods of communication. Using examples of serious illness in family or friends and case studies, as well as encouraging storytelling are less threatening ways to initiate ACP conversations.6,7 Providers should also create intentional opportunities to engage Chinese patients in ACP discussions. Research has demonstrated that Chinese patients do have favorable attitudes toward ACP, particularly after receiving education.7-9 The lack of desirable opportunities may actually be one of the most significant barriers.7 To illustrate, Chinese participants in a study examining beliefs about ACP made statements such as “We need
SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021
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