For more than 12 years, the Chinese American Coalition for Compassionate Care (CACCC)
has been key in overcoming cultural and language barriers in the Chinese community when it comes to end-of-life conversations. By providing comprehensive education, training, and outreach in end-of-life to caregivers, volunteers, and healthcare professionals, CACCC continues to fill in the gaps between cultures and languages.
Sandy Chen Stokes, CACCC founder and Board Chair, says “When we started in 2005, health providers attempting to serve the Chinese community were struggling; there were few Chinese end-of-life materials available to them. There were almost no Chinese speaking volunteers. Most Chinese Americans were not using hospice or palliative care. Even talking about death and dying was taboo.”
Engaging in End-of-Life Conversations
CACCC’s most recent response to these problems is a conversation starter to help dispel fears and myths about end-of-life. Using familiar comforts of home, such as tea, pastries, and playing cards, participants in CACCC’s “Heart to Heart Cafe” informally engage with others in end-of-life discussions. Each suit in the deck of 54 playing cards represents various concerns associated with end-of-life: spades represents physical issues, diamonds signifies financial anxieties, clubs denotes relationships, and hearts reflects spiritual needs.
Attendees of a “Heart to Heart Cafe” say they are surprised that talking about end-of-life can actually be entertaining and informative. The cafe activity is followed up with a workshop or presentation facilitated by trained volunteers to address questions and assist attendees with the filling out of their advance directive.
Conversations that deal with end-of-life shouldn’t wait until the end, encourages the organization’s founder. “We start the education process not at the end of life,” says Stokes, “but when people are still healthy.”
Addressing the Language Barrier
Since 2005, CACCC has partnered with more than 80 agencies, leading to the development of materials that have helped bridge gaps in understanding of end-of-life. CACCC, along with AHCD and POLST, co-produced a video and 50-page booklet on hospice and palliative care in Mandarin Chinese. More than 20,000 copies of the video and booklet have been distributed to the Chinese American community.
CACCC is actively working with more than 1,300 individual members, whose focus is helping Chinese Americans with advance care planning, assisting with palliative care and pain management, providing respite and hospice volunteer training, targeting education for members of the Chinese American community, and meeting the critical need of educating health care professionals who serve Chinese Americans.