August 26th, 2019 Interview with Dr. Gary Lee, specialist in Palliative Care
Working with the End-of-Life Nursing Education Consortium (ELNEC), Dr. Gary Lee, Palliative Care Specialist, joined a Train -The- Trainer program in China’s Hubei Province, teaching nurses to work through cultural barriers to improve China’s end-of—life care. Dr. Lee traveled with a team of nurses and a volunteer from the Chinese American Coalition for Compassionate Care (CACCC), spending 4 days educating a group of 27 nurses from different hospitals in Hubei province in central China – home to 57.24 million people. ELNEC is a US national education initiative to improve Palliative Care. The trip was sponsored by Project Hope.
In this discussion, Dr. Lee gives us his insights into Chinese cultural influence on healthcare decisions and approaches to Palliative Care and end-of-life delivery in this heavily populated country. For those of you who saw the movie “The Farewell,” some of this will sound familiar.
(We include a link at the end to full details of the trip from the CACCC Newsletter)
Dr. Lee, what were the most striking differences you found in the approach to end-of-life conversations between here and China?
The nurses we talked with struggle about how to do end-of-life conversations – when to tell patients – and what to tell colleagues (medical staff), who are focused on the treatment, not the person.
There is great reluctance to have the conversation. In most cases, especially with Cancer, the doctors share the diagnosis with the family, not the patient, and the families usually don’t tell the patient either, often waiting to do a DNR until the very end. The families seemed to feel that it was their responsibility to keep the patient from learning of their condition, and often the patients themselves, if they have pain or obvious symptoms, and sense that things are bad, don’t tell their families that either. It is as though they are each trying to spare the other ones’ pain.
There is a scene in “The Farewell” where Billie’s Uncle tells her that she is abdicating her responsibility to take on the burden (of her Grandmother’s prognosis).
Are there differences in how older and younger generations view having End-of Life conversations?
Interestingly, while we were there, my colleague Sandy Stokes asked a group of nurses, age 20-50 how many of them would want to know if they had terminal Cancer.
She then asked if that were your mother or father’s diagnosis, would you want them to know.
So, do patients have a say in their treatment if they don’t know what the prognosis is?
Cancer treatment is done without talking with the patients. Though I did not have the opportunity to see that in practice, since we were in an Educational situation with the nurses, not on patient rounds, the nurses expressed discomfort at this old approach.
Were you able to get any traction with the Heart to Heart cards, the Chinese version of GoWish?
The Heart-to-Heart cards have been very well received. The nurses go through them and choose the cards that are most important to them, then receive training in how to facilitate and lead their own workshops. The cards offer a way of discussing what’s important in a non-threatening way.
What was the biggest “aha” you had about how our different cultures handle end of life issues?
In the US, we are so individualistic. We assume we have the right to make our own decisions about our healthcare (no matter how dire the situation is). It’s an expectation.
In China, the families take the responsibility for taking on the bad news and shouldering the treatment decisions for the patient.
The spouse of one of our colleagues, when asked if he would tell his mother if she was dying said he would not. He did not want to make her miserable.
And interestingly, the patients take responsibility as well, (each without revealing to the other what they know or suspect.) There are stories of patients who want to leave the hospital and return home, because if they die in the hospital, it would be a burden to the family to transport the body.
Do you feel that the EOL nurses training might have an impact in China’s palliative care?
Absolutely. While the larger, coastal cities in China like Beijing, Shanghai, and Guangdong have established palliative care practitioners in their larger hospitals, the nurses we met in Wuhan are hungry for training in these topics. Over the last 4 years, this program has trained 115 master ELNEC trainers, who have in turn trained 2700 other nurses, who have impacted the care of tens of thousands of patients.
Thank you so much Dr. Lee. Many countries, including China, have a way to go in the areas of palliative care and end-of-life decisions. Each, naturally has their own way of dealing with death, but families in China take care of each other and want the best for their loved ones. That and the nurses’ training programs will surely bring about more openness over time. And it sounds like Heart to Heart, which is already opening doors to the conversation, may be able to help end of life discussions move more quickly.
Read the full article with details on the trip in the Chinese American Coalition for Compassionate Care (CACCC) Newsletter http://bit.ly/2lWA5xR
For more information on end-of-life conversations, including the GoWish card game for use anytime, visit the Coda Alliance Website, www.codaalliance.org.