When the Push for Transparency Meets a Family's Wish to Keep the Diagnosis Secret: What Should KangAi Commune Do?

KangAi Commune has always insisted that every mutual-aid case be disclosed to all members and handled with openness and transparency. This is an important foundation for building trust and upholding fairness. But in our actual visits and reviews, we often run into a troubling problem: family members want to hide the true condition from the patient, while the Commune must verify the condition and make the mutual-aid case public.

In China, especially when it comes to cancer and other serious illnesses, many family members fear the patient cannot bear the blow of knowing the truth, and so they ask doctors, relatives, friends and even the Commune's visiting team to keep it from the patient together. Sometimes the patients themselves do not know what illness they have, let alone how serious it is.

I did not agree with this practice in the past. I once hoped the Commune could enforce one principle: since a person has chosen to join KangAi Commune, they should accept being told the true condition, and it should no longer be hidden from the patient.

I believed that patients have the right to know their true condition, and also the right to decide how to face the illness and to arrange their treatment and their life. Moreover, the Commune is an open and transparent mutual-aid organization. If even the patient does not know the truth, yet the visiting team, the reviewers and all members are asked to cooperate in concealing it, this not only makes review harder but also conflicts with the transparency we insist on.

But after years of practice, my thinking has gradually changed.

I have found that hiding the diagnosis from a seriously ill relative has deep roots in Chinese family culture and psychology. It is not necessarily that the family does not respect the patient; it comes from fear, worry and the instinct to protect a loved one. We may disagree with this practice, but it is very hard to ask every family to change overnight.

A mutual-aid system, even with the right principles, cannot be completely detached from the people it serves and the social reality around them.

So KangAi Commune today has made compromises too. We respect family members' concerns and long-standing habits, and in visits, reviews and public disclosure we avoid as far as possible causing accidental harm to patients. Of course, this respect does not mean families can decide everything on the patient's behalf, and still less does it mean the Commune can give up its review principles.

We can compromise on how something is disclosed, but not on whether a case is genuine; we can protect patients' privacy, but not at the expense of fairness to all members.

This has also given me a deeper understanding of transparency. A good system needs not only to hold to principles but also to understand human nature and respect reality.

This is not abandoning transparency; it is making a transparent system more mature.