Sandy Chen Stokes was living and working as a registered nurse in the United States when she got word that her father, who had terminal cancer and pneumonia, was rushed to the hospital in her home country, Taiwan, in 1999. Later, when she tried to talk to the Taiwanese doctors about a “Do Not Resuscitate” order, they were horrified. They refused to comply because a DNR was illegal at that time. Her father remained in the intensive care unit for over a year before ultimately passing away.
“I was working as a nurse in a hospital when my father got sick,” says Stokes. “But because of how taboo it is to talk about death in a Chinese society, there was nothing I could do to make my father’s life better at the end.”
Stokes returned to the U.S. with a renewed sense of purpose: to help elderly Chinese Americans and their families think and talk about end-of-life care. Since then, she has become one of the country’s most notable end-of-life care advocates for Chinese Americans.
Forming a Coalition to Help Chinese Americans
In 2005, Stokes decided to form a coalition with her colleagues and a network of healthcare providers to educate them about the challenges facing Chinese Americans when it comes to end-of-life care, and to educate Chinese American families in her community about what their options are. Thus, the Chinese American Coalition for Compassionate Care (CACCC) was born.
What started out as in informal project to address a lack of communication about end-of-life needs in Stokes’s community became an incorporated 501c(3) nonprofit by 2007. The Coalition now focuses on helping Chinese Americans with advanced care planning, providing respite and hospice volunteer training, assisting with palliative care and pain management, educating the greater community, and meeting the critical need of educating healthcare professionals who serve Chinese Americans.
“In America, most families will honor the individual wishes of an elder as they age, but Chinese families don’t operate that way,” says Stokes. “A Chinese family makes a decision as a unit, which ultimately might not be what the senior wants. Chinese people don’t talk about end-of-life care, but we want to change that.”
Creating a Pathway to Honest Conversation
One of the most effective ways the CACCC has connected with Chinese Americans is through an event called Heart to Heart® Café. It’s a relaxed environment, where Chinese elders, volunteers, healthcare professionals and translators can sip tea and play a card game with Heart to Heart Cards. Heart to Heart Cards are similar to a regular deck of cards, however each suit in the Heart to Heart deck represents an area of concern when it comes to end-of-life care. For example, the suit of hearts represents spiritual concerns, the diamonds represent financial concerns, the clubs social, and the spades physical. Each player picks 12 cards—three from each suit—and then identifies which would be their top three priorities regarding their end-of-life care.
“Some people are really hesitant at the beginning and don’t want to play or talk about anything at all,” says Shirley Pan, a project coordinator with the CACCC. “But by the end, they always end up joining in. They realize there’s really so much for them to think about and discuss.”
The point of the game is to not only encourage conversation among the older Chinese immigrants, but also to open them up to talking to their family members about how they are feeling.
“Many communities don’t have experience with death and dying,” says Lilu Chen, also a project coordinator for the organization. “It’s a very taboo subject for Chinese immigrants, and our goal is to make this subject more palatable and even enjoyable for them.”
Continuing the Conversation
Although the CACCC is based in Northern California, they have sent their staff members all over the country to help train other organizations on how to start a conversation with Chinese Americans about death.
Melinda Leong Capozzi, a lawyer by trade and next in line to chair the CACCC board, was born in America but was able to see that many Americans take a lot of their systems for granted. In Chinese societies, there are really no patient rights and, in many cases, if an elderly patient receives a bad diagnosis, the doctor would tell their family members before telling the patient.
“Doctors and families go out of their way to shield patients from a negative diagnosis,” says Capozzi. “And then the family will make medical decisions on the patient’s behalf without ever consulting them. The Chinese American Coalition for Compassionate Care aims to make multigenerational families aware of all their options, especially the older generations who find this to be totally foreign.”
The CACCC’s success with community outreach through the Heart to Heart Café® events is something the nonprofit would love to bring to other immigrant groups, especially those who do not speak English as a first language.
“We’d love to see other diverse groups adopt our model for their communities,” says Stokes. “It’s had such a profound effect on everyone involved. It creates a very natural conversation for family members, and many of them are surprised by the responses and wishes of their elders.”