Learning to live with death: Ji Cien organises workshops that tackle Chinese taboo

Former hospice volunteer wants to change the mindset of families with terminally ill relatives

PUBLISHED : Saturday, 27 August, 2016, 11:02am
UPDATED : Saturday, 27 August, 2016, 11:02am

Ji Cien says death is an experience the living can learn from. The 29-year-old works in an orphanage in Dali, Yunnan province, but also runs workshops to teach ordinary people about death. She explains to Laura Zhou how she became so passionate about death, traditionally a taboo subject in Chinese society.

How did you come to the idea to do something about death?

It all began when I was 19 years old. It was nearly 10 years ago and my best friend was diagnosed with liver cancer and she required me to sign a euthanasia agreement for her in the Netherlands. I did what she wanted but it pushed me into a dark corner of my life, with many people accusing me of a murder at that time. They said I was the one who killed her. I was almost destroyed by that experience about death.

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I suffered a lot and even underwent psychotherapy for a year and a half. But it’s probably a part of my nature that I grew stronger in a tough situation, and I told myself that I needed to figure out what death was, and why it almost defeated me.

I became a volunteer in a hospice in Beijing in 2009, serving patients at death’s door, one on one. During that time I met more than 100 people who were terminally ill. I saw their suffering and believed they could have departed in peace and dignity. I wanted to make some changes and I thought the first step was to change the mindset of their families.

One case really changed me. It was an old lady who was forced to take chemotherapy because her children didn’t want her to leave, despite the fact that her deteriorating health couldn’t allow her to take any such therapy. In a silent protest, she sliced her arm with a knife each time her daughter forced her to have the therapy. It wasn’t until the fourth time that the daughter finally gave up. I really wanted to ask the daughter: “Do you love your mother? Or is it because of yourself that you won’t let her go?”

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In China, it remains difficult to promote the idea of terminal care because the idea of death is usually rejected by ordinary people. To these people, death means suffering and pain. This is a misunderstanding. People can pass away in dignity. If you refuse to accept the fact that he is dying, how can you let him go in dignity and peace? Many people try to avoid death by using every measure to extend their lifespan, and this is wrong. That’s why I think the first thing is to change the view of death, not just to talk about death, but let more people really learn from it by experiencing it.

How does the workshop work?

In 2011 I began to regularly share my views about death in different places around the country, including some universities and libraries, but I soon realised that words were not powerful enough.

So I began to hold workshops to give people a way to face it. In cooperation with some local organisations, for example some institutes offering psychological consultations, I would first talk about the concept of death. Then we would do some interactions to simulate the situation when death is approaching so participants could share their views about death and let them really understand the source of their fears about death.

For instance, in the simulation of an aviation accident, participants would be told they were in a situation when the plane was about to crash in five minutes. So they had five minutes to make a will and review their real feelings about death.

To experience the fear of death, we would also have one participant stand on the table and push him off it without any warning. We also show movies about how people make choices between death and medical treatment to better illustrate the situation some families experience. And we also have discussions, look at case studies and offer some advice.

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By doing all this, I hope we can teach people empathy for people who are dying, so that they can make a choice on their behalf, because you can only make a good decision for others when you really understand them.

What kind of people are interested in the workshops?

So far we are working with some companies, offering tailored courses for their employees. As for the general public, doctors and psychologists are more interested in our workshops, as well as some people who have encountered or are going to face similar problems. The rest are those who are interested in terminal care.

Most of them are women, aged between 35 and 50. Men only comprise a small percentage of the participants in our courses – about two to three on average in a 20-person workshop.

You are still young, why did you choose such a weighty topic?

Everyone fears death, because death is something out of everyone’s control. But people, especially in foreign countries, who receive education about death know that they need to confront such fears, and they learn from a young age how best to deal with such fears. It’s like a hunter and a savage beast – a hunter could be afraid of a beast, but when he has been taught how to protect himself, he knows how to face it. But in China, we have little knowledge about death, so when death is approaching, we run away.

In ancient China, a natural death used to be something considered good fortune, but death gradually became something horrible. Our parents told us we should not talk about death because it was a bad thing, and we never asked why.

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But something is changing, especially among the young generation, who received a different education compared to our parents’ generation. We witness with our own eyes and have our own thoughts. Compared with our parents, we are more realistic and want a happy, comfortable life, so the idea of “I’m alive but I have no life” is not as deep in the hearts of the younger generation as it is in their parents’.

For example, my mother and her generation never cared too much about the quality of life, but my generation cares more about enjoying life, so when I am dying I would want a comfortable death.

If such ideas are dominant among the younger generation, I believe we can expect more changes in the future.

What’s your future plan?

Apart from the workshop, I am also working on a new project to promote the concept of prenatal care in rural China. The idea came from my experience in volunteering in orphanages, where many children were abandoned, mostly because of their birth defects. And when I travelled abroad and talked to those Chinese children adopted by foreign families, I found they were not happy because they could hardly find their roots in a foreign environment, even though they might be living in better conditions.

That made me think about how to prevent this from happening. Ifwe could ensure the health of the babies, fewer of them would be abandoned and less money would be needed to take care of them, while they could happily live with their parents.

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I believe antenatal care could be a solution. By promoting the concept of prenatal care and offering small amounts of financial support, I hope that families, especially in rural China where abandoning children is more common, come to realise how their children will suffer if they abandon these kids with birth defects.

We are now working with a foundation on promoting the idea of antenatal care to rural women. Local village or town governments would help to gather the audience, while one volunteer would focus on the medical knowledge, while I would talk more about what would happen after a child with birth defects was abandoned. We are trying to apply for government approval to offer prenatal care to rural women. But before that, we need to plant the idea in people’s hearts.