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Discussing the Unspeakable: Serious Illness with Aging Chinese Parents
Esther J. Luo, MD; Sandy Chen Stokes, RN, MSN and Deborah A. Szeto, MSN, RN, CCRN
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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 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.
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
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
an appropriate [safe] opportunity” and “I just never found the right moment to initiate the conversation.”7 Importantly, due to family dynamics and cultural norms, most Chinese patients— both older and younger—often prefer for healthcare providers to begin ACP conversations, versus having to bring the topic up themselves.8,10,11 As many Chinese patients hold healthcare providers in high regard, this respect and trust acts as a facilitator for ACP discussions.11
Though perhaps most evident, the utilization of culturally appropriate ACP materials and Chinese language assistance cannot be emphasized enough. Since participating in an often emotionally draining conversation that can include unfamiliar medical terminology would be understandably challenging, language barriers would likely only complicate matters. In one study, Chinese participants expressed difficulty in engaging in ACP due to the lack of language concordance and appropriately translated forms.7 Accordingly, providers not fluent in Chinese need to utilize professional language assistance for patients whose primary language is Chinese. Forms and educational materials should also be provided in patients’ preferred language, keeping in mind preferences between simplified and traditional Chinese. Lastly, simply providing educational materials may be insufficient to achieve advance directive completion.12 Therefore, arranging for hands-on guidance and follow-up support to facilitate the completion process (e.g., clarifying confusing terms, offering notarization or witnesses) can be very effective.12
Founded in California in late 2005 to address the lack of linguistically and culturally appropriate information in the Chinese American community, the Chinese American Coalition for Compassionate Care (CACCC) is the first and only coalition in the US devoted to end-of-life care for Chinese Americans. The coalition consists of over 200 local, state, and national partner organizations and approximately 3,000 individual members supporting the mission: “To build a community where Chinese Americans are able to face the end of life with dignity and respect.”
CACCC is a coalition of trained bilingual Chinese volunteers with an interest in end-of-life care and aging, and end-of-life care professionals from different backgrounds who are committed to improving culturally competent care for this community. CACCC emphasizes the importance of bringing as many people to the table as possible—diverse professionals, community leaders, and members, and organizations that serve Chinese Americans—and dedicates portions of its meetings to educate coalition members and volunteers, as well as plan projects. To fill the lack of end-of-life materials in Chinese, CACCC’s translation team translated the California Advance Healthcare Directive into Chinese and modified it to better fit Chinese cultural norms. Additionally, 11,000 copies of CACCC’s DVD presentation in Mandarin and its accompanying 50-page booklet in Chinese, Advance Healthcare Directive & Hospice and Palliative Care, were distributed free of charge. Visit www.caccc-usa.org for more information. references on request
Other resources developed by the CACCC include:
• CACCC’s Heart to Heart® cards and Heart to Heart®
Café: Heart to Heart® Café is an Advance Care Planning group activity which makes use of Heart to Heart® cards to facilitate discussion about end-of-life issues. https://www.caccc-usa.org/en/activities/heart2heart.html • “Loving Life - Understanding Hospice”: This video was created by CACCC, under contract with the Hospice
Foundation of America through a grant from the Centers for
Medicare & Medicaid Services (CMS). https://youtu.be/HL84zrwcZoU • Learning to Let Go: Saying Goodbye Peacefully: This book discusses Chinese Americans’ attitudes, choices and experiences at the end of their lives, as well as the perspectives of family members, volunteers, and health care professionals involved in end-of-life affairs. This book offers insight on a peaceful and guilt-free death. https://www.caccc-usa.org/en/resource/documents.html • “Kathy & Windy”: This documentary film features a mother and daughter’s journey confronting mortality. The
Kathy and Windy story sheds light on how we can prepare for and navigate the final chapters of our lives with direction, purpose, and confidence. https://youtu.be/R_I0f134eUQ • CACCC translation of Coalition for Compassionate Care
of California’s Decision Guides about life-sustaining
treatment: Artificial Hydration, CPR, Tube Feeding, and
Ventilator. https://caccc-usa.org/en/resource/documents.html • CACCC translation of The Conversation Project’s Conversation Starter Guides. A Conversation Starter Guides for Caregivers of People with Alzheimer’s or Other Forms of Dementia, Your Guide to Choosing a Health Care Proxy,
Your Guide to Being a Health Care Proxy, Your Guide for Talking with a Health Care Team, What Matters to Me
Workbook, and For Caregivers of a Child with Serious Illness. https://caccc-usa.org/en/resource/documents.html
Esther J. Luo, MD, works in Palliative Medicine at Santa Clara Medical Center, Kaiser Permanente; Sandy Chen Stokes, RN, MSN is Founder & Board Member Chinese American Coalition for Compassionate Care, and Deborah A. Szeto, MSN, RN, CCRN Works in Palliative and Critical Care.
