Research by Pun et al. (2020), in plain language
What’s this study about?
This study looks at how end-of-life conversations happen in Chinese culture.
Why did they do this study?
When facing life-threatening conditions, doctors normally talk to patients about treatment and end-of-life matters. These conversations can help patients receive more gentle medical treatment, have a better quality of life in their last days, and lower their family’s risk of suffering depression. But, the guidelines for doctors on how to have end-of-life conversations were created with Western people in mind and might not be culturally-sensitive for Chinese people. The researchers in this study wanted to find all the research papers written about end-of-life conversations in Chinese culture to see what the key messages are.
How did they do this study?
The researchers entered the terms ‘end of life’, ‘terminal care’, ‘communication’, and ‘Chinese’ into several health research databases. They also looked through specific journals and the reference lists of specific papers. They found 982 relevant papers published from 1994 through to 2019. They checked the papers and kept only the ones that were cross-marked by third-party researchers, based on original scientific research, and written in English.
What did they find in this study?
The researchers found 13 research papers that fit the purpose of their study. From these, they drew six key messages about end-of-life conversations in Chinese culture.
I. A ‘good death’ according to Chinese philosophy
The idea of a ‘good death’ in Chinese culture has been shaped over four millennia by Confucianism, Daoism, and Buddhism. According to a study done in Hong Kong, a good death means 1) being aware of dying, 2) maintaining hope, 3) not suffering, 4) having control for yourself, 5) keeping relationships, 6) getting ready to die, and 7) accepting the timing of dying. Another study showed that a good death isn’t about a person’s age but how well they served their family. Because of this, older people are more likely to have a good death, since they’re more likely to have fulfilled their family duties and accepted that they can’t do much more to serve their family. In an interview study in Hong Kong, elderly Chinese widows said that they had wished for their husband to have as little pain as possible, have family around when they died, keep good relationships with family members, die naturally, and not be a burden to others. This was their idea of a good death.
II. Not wanting to talk about death and dying
In Chinese culture, it’s felt that discussing end-of-life matters and planning for death disturbs a person’s emotional balance because it focuses on bad things. Both doctors and patients are afraid to talk about death and dying because they don’t want to be jinxed. Elderly people are especially sensitive to the subject and many believe that the act of talking about death ‘invites’ death to come sooner. These taboos make it hard for doctors and patients to discuss end-of-life matters. In fact, many patients can be in the dark about their worsening condition even in their last days. On the other hand, patients who have a better understanding of their condition, a higher level of education, or a more Western frame of mind tend to be more open to discussing end-of-life matters.
III. Talking about end-of-life matters is taboo
Talking about death and dying is taboo in Chinese culture. Studies show that Chinese people prefer to discuss end-of-life of matters in a roundabout way, instead of talking about it frankly. For example, instead of having a conversation straight up, doctors might read the patient’s body language to see if they’re open to discussing it. This gives the patient a chance to say no without saying no, and is felt to be more gentle. Another way might be to talk about other patients’ experiences as an example, or to frame it as the hospital policy to ask. This makes the conversation less personal.
IV. Doctors are in charge
In Chinese culture, doctors are highly respected. Patients look to doctors as the beacon of all wisdom about their health and expect doctors to make decisions about treatment. Traditionally, the expectation is that patients sit and listen, and asking too many questions is seen as challenging the doctor’s authority. This is especially the case in Mainland China. These days though, the power of doctors and patients is much more balanced and there’s more of a back-and-forth. But, end-of-life matters are still hard to discuss. Patients usually give a vague idea rather than say specifically what their wishes are. And, they usually tell their family rather than the doctor.
V. Family wishes matter more than the patient’s
Chinese people believe strongly in facing end-of-life matters as a family. Unlike in Western culture, Chinese culture values ‘the whole’ over ‘the one’, so patients tend to want to make decisions with their family as a whole. Many elderly patients in China feel that their children have a strong understanding of their wishes, so will count on them to make decisions about treatment and end-of-life matters on their behalf. In fact, many Chinese families are against doctors telling their dying family member that they’re dying, even though they believe that a dying person should know that they’re dying. A study in Taiwan found that there was a big difference in what dying patients were told about their condition and what their family members knew.
VI. Doctors are unsure about how to discuss end-of-life matters in a culturally-sensitive way
Chinese doctors tend to tiptoe around the subject of end-of-life matters. The cultural preference is to not deliver bad news and doctors can be told by family members to not tell the patient they’re dying. But, this makes it hard for doctors and other health professionals to communicate properly with the patient and to give the patient emotional support. Health professionals find this frustrating. They report that the hardest part is looking after the patient emotionally and psychologically. Many health professionals, even nurses who specialise in end-of-life care, want more training on how to do this.
What do the findings mean?
A lot of how Chinese people deal with end-of-life conversations comes down to their traditional values tied to Confucianism, Buddhism, and Daoism. Generally speaking, there isn’t much open discussion on end-of-life matters because talking about death and dying is taboo. Also, while Western people want to make decisions for themselves, Chinese people tend to make decisions as a family. Both Chinese and Western doctors use non-verbal cues, like tone of voice and attitude, to judge whether a patient is ready to discuss end-of-life matters. More and more studies seem to show that Chinese people would be open to discussing end-of-life matters if they were given the chance to have a proper conversation with their doctor and family when diagnosed with a life-threatening condition, or in their last days. Overall, there isn’t enough research on how end-of-life conversations happen in Chinese culture. A better understanding is needed to make sure it can happen in the most sensitive way.
Where can I learn more?
This blog post is based on the following paper:
Pun, J. K. H., Cheung, K. M., Chow, J. C. H., & Chan, W. L. (2020). Chinese perspective on end-of-life communication: a systematic review. BMJ Support Palliative Care. doi:10.1136/bmjspcare-2019-002166
You can read the original paper here:
For a more cinematic experience, I recommend watching The Farewell (https://www.youtube.com/watch?v=RofpAjqwMa8).
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