HOSPICE FOUNDATION OF AMERICA
Interview with Sandy Chen Stokes, RN, MSN
Sandy Chen Stokes, RN, MSN, a geriatric nurse specialist and public health nurse, is the founder and Executive Director of the Chinese American Coalition for Compassionate Care (CACCC). Sandy has promoted the use of the Advance Health Care Directive and other EOL issues in the Chinese media and at conferences around the nation. In 2001, she arranged to have Bill Moyers’ “Finding Our Way” series translated into Chinese and published in the World Journal.
Sandy served on the Access Diversity Advisory Council of the National Hospice and Palliative Care Organization and was American Cancer Society-California Chinese Unit President for 2000-2001. Sandy continues to serve on the American Cancer Society California Division’s Asian American /Pacific Islander Team and the Hospice of the Valley Advisory Board.
Q. What experiences helped you to become interested in educating Chinese Americans about end-of-life care options?
A. My involvement started with a personal experience with my father in 1999. He lived in Taiwan and had cancer, and had developed pneumonia. I am a nurse, and so once I arrived in Taiwan, I spoke with my father’s doctor about options for my father, including a Do Not Resuscitate (DNR) order. The doctor looked at me and laughed, saying, “You must live in the United States!” I did not realize that, in Taiwan, a DNR order was illegal at that time. My father ultimately was placed in a critical care unit, where he stayed for almost a year before he died.
At the time I was working with Chinese American seniors with Catholic Charities in the San Jose area. I realized that families were not talking about issues around end-of-life care and didn’t realize they had better options. My father did not have a choice, but Chinese Americans in the U.S. do have a choice. What was lacking was adequate information to help them make good choices.
Q. Much of your work has focused on providing appropriate information around diagnosis and advance directives. Can you talk about why it’s important to start with those discussions?
A. In 2002, I conducted focus groups in Mandarin and Cantonese for the California Coalition for Compassionate Care. The majority reported that they indeed did not have adequate information for making better decisions. One of the most important discoveries was that a majority also stated that, when thinking about past experiences with family members who had died, they definitely would have made different choices if information had been available In Chinese. This realization has helped us to continue this important work through the CACCC.
Q. What are some of the major challenges that you have found in educating the Chinese American community about these issues?
A. A very basic issue of communication is the challenge of linguistics, of language. These challenges exist both in spoken communication and written communication between physicians and, families and patients. And problems with communication can often lead to mistrust. Families may feel that physicians do not understand Chinese American culture or do not share information in a culturally sensitive way. On the other hand, some families may not understand the situation their loved one is facing. Even the “culture” of a hospital can be a greatly unfamiliar environment. Everyone speaks English, all of the signage and the brochures are in English. Even hospital policies about visiting hours and how many visitors in a room may be in conflict with Chinese culture and values.
Another important issue is that family members should not have to serve as interpreters in a medical situation. One of the reasons for this is that they will often change the diagnosis and prognosis the doctor explains to them to prevent the patient from fear.
Another area that we’ve begun to address is generational issues. Each generation may look at end-of-life care very differently. InChinese culture, we have great respect for our elders. Younger family members may be better informed about healthcare choices, yet suppress their voices out of respect. Grandma may be the patient but is often not made aware of the options she has to make an informed decision. In Chinese culture, the family acts as a “unit”; many healthcare professionals do not understand that decisions are made by family members, often the oldest son, not the patient.
I spoke earlier about our findings that people would have made different decisions about end-of-life treatment if they had had more information. It is also very typical that Chinese Americans my age say they would still seek aggressive treatment for their parents. Yet, when asked if they would want the same for themselves, they say no, they would make very different decisions. Younger people may be concerned that their community will judge them harshly if they do not advocate for aggressive treatment for a dying parent.
Q. Hospice is often described as the “gold standard” of end-of-life care, yet the majority of people served by hospice are white. What barriers exist for Chinese Americans in accepting hospice care, and what can hospice professionals learn from your work to reach out to this community?
A. I give great credit to the hospice and palliative care movement for encouraging and advancing these discussions. I think, in some ways, that hospice for minorities is where hospice care was with the white community in the 70s. I remember when I first started looking at NHCPO statistics about hospice usage in 2002—they didn’t show usage by the Asian community, because there weren’t enough to even be a statistic! So while the numbers are small now, I’m always pleased to see that we are finally on the chart.
A number of challenges do exist in bringing hospice to the Chinese American community. A high number of Chinese Americans do not want to die at home; this is actually a change from past generations. Another challenge is the difficulty in finding an adequate number of native speakers to provide care and act as interpreters. Financially, hospices cannot be expected to be fully staffed by professionals who are bi-lingual. But most hospices rely greatly on volunteers, and finding volunteers who can communicate with Chinese patients is a genuine challenge. And for many Chinese sharing deeply personal and emotional issues with “strangers” is not something that they are comfortable with.
Q. What advantages have you found in developing the CACCC as a true coalition?
A. I have to say that it has exceeded my expectations. Currently we have over 60 organizations signed up as partners. Our relationship with the local American Cancer Society California Chinese Unit and the Alzheimer’s Association is a great example of why this works well. While end-of-life issues are not their focus, there is room for partnership. And there are financial benefits for these organizations as well. We can each rely on each other to provide important information, without having to devote extra staff time, so the burden does not fall all on one organization. In addition to the work we do locally, our presentations throughout the country and our website (www.caccc-usa.org ) allows the CACCC to help families in many geographic regions.
Q. You will be a participant on HFA’s upcoming teleconference on “Diversity and End-of-Life Care” on April 29. One stated goal of the program is to “discuss the knowledge, sensitivities, and skills necessary to work with culturally-diverse populations in end-of-life care.” What are some of the tools that you have found to be useful in your work with healthcare professionals?
A. An essential component is producing appropriate materials. And I like to see that training materials are not just translated from English into Chinese, but that are actually written for Chinese speakers. And just as these discussions need to start early, it’s important to have materials that cover not just hospice, but topics such as Advance Directive and pain management.
We spoke about it already, but it is impossible to underestimate how powerful the issue of language is. Even among Chinese Americans in the US, there are four or five different translations or interpretations of basic hospice and end-of-life care terms. Part of the work of the CACCC is to unify the terminology. This can be a very challenging and frustrating process; one professional told me she has struggled with how to translate the title on her business card!
The CACCC worked with NHCPO to produce a good resource on Chinese Outreach (PDF).
Another recommendation that I make is that, in doing “outreach”, hospices should go to the community and partner—it’s not just about “reaching out” and hoping you connect. Find out who the “gatekeeper” is in each particular community, who has real access and real connections.
One issue we have not yet discussed, but is so important, is the issue of religion and spirituality. The majority of hospice patients who have strong spiritual beliefs are most likely to be Protestant; but a high percentage of Chinese Americans are Buddhist or Taoist. Hospice professionals must ask themselves—does our hospice have the ability to provide appropriate support for any spiritual persuasion? Again, I don’t think it’s necessary to have all beliefs or cultures represented on staff. But organizations need to know what resources are available, and how to readily access them when necessary.