Original article: Advance Care Planning Canada
by Ya Ning Gao
The 2019 movie “The Farewell” tells a tale of the clash between Western and Chinese cultures. A young woman, Billi, is told to say goodbye to her grandmother in a northern Chinese city, but cultural norms forbid her from discussing the terminal illness of the family elder due to cultural differences. The movie dances around the topic of advance care planning (ACP) quite a bit. In the end, it is a movie about the power of family. Some things are never explicitly said, but what is wanted by the family is for Billi’s grandmother to have a good quality of life, rather than dwell on the end of it.
In the Western world of medical practice, physicians view East Asian culture as having a very different point of view on health and death. There may be much taboo surrounding the discussion of death; it is often viewed as a bad omen. It is crucial in Chinese culture for patient relatives to be involved and for some patients to forego autonomy. End-of-life care may be discussed in private. But in agreement as a family.
There is often stigmatization of East Asian culture’s view of end-of-life care. Studies show that oncologists spend significantly less time discussing end-of-life care with patients from non-white cultures compared to white patients. From a Western perspective, not informing the patient of terminal diagnosis could seem cruel and unethical, as it feels that the patient’s autonomy is not being respected. In China, it is inconceivable for the average patient to receive diagnosis terminal illness alone. Patients are mostly accompanied for moral support.
Moreover, there may be some difficulty navigating the medical system for East Asian patients. Some patients are too scared to sign any level of care documents, given that they fear doctors may not attempt to save them when the time comes. Behavioural scientists have shown that some Chinese patients may appear overly polite and agreeable, when in fact they are merely deferring to the authority of their treating physician.
The relatives of patients at times feel tremendous guilt, and burdened with responsibility as the substitute decision-maker. Sometimes, ACP is not discussed at all, so as not to discourage the inflicted, for the patient to not lose hope. It come out of a kind place for the patient to perhaps enjoy his or her end of life. Other times, relatives of patients act selfishly and want the patient to try everything possible. They are therefore biased and may not have the patient’s best interest in mind. Some small studies were done in China, which found that ACP increases the expression of end-of-life care and decreases decision-making conflicts.
There is a lack of knowledge or education about advance care planning. Elderly Chinese patients in Canada often live within their own community and are more isolated and lack access to appropriate information. In a 2018 Hong Kong study, the majority of seniors had never heard of the term. Patients are more likely to have ACP once they are informed about what it is.
As a physician, it can sometimes be challenging to engage family members in an end-of-life care discussion; we are often more focused on treating the patient and not the family members. However, we need to create more opportunities to discuss end-of-life care with patients of all cultures. There is a lack of general education for physicians to recognize ethno-cultural meanings of illness and disease. Emphasizing patient autonomy and overlooking the value of family could lead to end-of-life care being unsatisfactory. There is no easy solution for cultural differences in end-of-life planning and it is okay to involve family members to actively participate in the discussion. It is acceptable for patients to defer decision-making to their relatives as long as they can consent and discuss their wants and needs.
Having worked with elderly Chinese patients, I do draw on what I have learned from the movie. It is helpful to shift perspective and respect the cultural differences of my patients in terms of advance care planning.
In the end, we all want to be loved; we want to be surrounded by our loved ones as much as we can, especially in our final moments. In the case of the movie, not knowing may very well have been the wish of Billi’s grandmother. And that was what we understood. As long as the family understood the wish, inner peace could be reached, and they could heal and grieve as a family.
Ya Ning Gao is a Montreal physician