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2018-09-11 10:06:32 Commentary

As a palliative care physician primarily responsible for patients with late-stage cancer, my job is, in no small part, to talk about death.

Although many of my patients have been undergoing treatment for months or even years, China’s culture of silence around illness and death means they often still cannot fully grasp their situation or prognosis.

Part of the problem is that the principle of informed consent — which requires a patient to be informed of their diagnosis and prognosis, and that they understand both it and the course of treatment prescribed by their doctor — is viewed differently in China than in other countries. Informed consent forms the very bedrock of the patients’ rights movement, guaranteeing patients a say in their own treatment. In China, however, doctors do not always get informed consent from their patients. In many cases, they will confer with family members or caregivers instead.

Readers more familiar with Western medical practices may recoil at the notion of doctors not informing a patient of their condition first — or at all — and instead allowing a patient’s family to conceal it from them. In China, however, it is commonly believed that informing someone that they are seriously ill may actually worsen their condition. Chinese law even makes a clear allowance for this notion, stating: “Doctors should explain the diagnosis to either the patient or their family members, but they must be mindful to avoid causing harm to the patient in doing so.”

My experience has led me to question whether this is the right approach. In 2007, I helped treat someone with late-stage cancer. The president of a publicly traded company, the patient was not yet 50. When I informed his family that his prognosis was not good, I urged them to tell him the truth as soon as possible, so that he could write a will and make all the necessary arrangements. But they refused to listen. To our horror, rather than trust our medical advice or allow the man to decide for himself, they attempted to treat him on their own, using a quack remedy they had somehow obtained. Almost immediately, the patient fell into a coma.

In China, it is commonly believed that informing someone that they are seriously ill may actually worsen their condition.

The man’s family immediately came to us, hoping that he could be revived in time to dictate his will. However, in spite of our best efforts, he never woke up and died just two days later. He left behind no will — leaving his family and company in chaos — but more importantly, he never even knew he was dying. If his family — or we, his doctors — had simply told him the truth, he could have had a chance to say his final goodbyes and maybe even make peace with what was coming.

As a doctor, this incident left me shaken. I came to firmly believe that all patients should have a say both in how they are treated and how they prepare for the end.

Sadly, this belief is not yet widespread in China. In current clinical practice, when a patient’s prognosis is poor, most Chinese doctors still generally inform a patient’s family members first and let them decide whether or not to tell the patient. It is not uncommon for families to decide to keep the news from the patient out of a desire to protect them.

I should note that this is not viewed as unethical or improper in China, and in fact is somewhat of a cultural expectation. Traditionally, when an individual fell seriously ill, families would work together to make decisions about their care in order to ease the sick person’s burden. This notion may seem foreign to some, but in Chinese culture, making important decisions on behalf of a parent, child, or spouse is an important means of discharging one’s filial obligations.

Although I understand the origins of this mindset, as a doctor I always advise family members to inform patients about their prognosis. If someone is fully aware of their condition and all the potential treatment options, they make for a much more understanding and cooperative patient. But even setting aside my role as a doctor, I believe all patients — especially the terminally ill — should be informed of their true prognosis and allowed to make decisions about their treatment, including whether to suspend it if they so desire.

As physicians, it is not only our responsibility to inform patients and their families of the diagnosis, available treatment options, and possible complications; we also have the sad duty of telling them when there is nothing more to be done, and to help them accept this fact. If these difficult conversations do not take place early on, patients may not have time to come to terms with their diagnosis.

At present, many — including doctors themselves — are unwilling to have these hard conversations.

In 2010, I treated a female patient with late-stage cancer. She and her husband had been sent down to the countryside during the chaos of the Cultural Revolution, and then later started a successful business together. Through it all they maintained a good relationship. Unfortunately, I had no choice but to tell them that they would have, at most, two more months together.

After our conversation, her husband, whom she had designated to handle all medical decisions, went into denial. He kept insisting that we cure her illness, “no matter the cost.” I told him that sometimes, it simply wasn’t possible to buy a patient more time. If extending a person’s life was simply a matter of money, life wouldn’t be as precious as it is. I let him know that we would try our best to treat his wife’s illness, but that she did not have much time left. We had the same conversation, over and over. All along, the two of them kept wondering if she was dying because they hadn’t spent enough money on her care or because I had not treated her correctly.

It took a month for them to finally come to grips with the truth. While convincing them was a challenge, as their doctor, I was just happy that she still had enough time to contact her family members and say her final goodbyes. They had kept the news of the illness from their daughter — which is not uncommon; the desire to avoid these uncomfortable conversations goes both ways — and the young woman was shocked when she found out. After the daughter settled down, however, the patient and her family were able to say their farewells and make final arrangements. She passed away a few days later.

When faced with a diagnosis of terminal illness, denial is not an uncommon response. Families cling to the hope that something can be done to save the patient, sometimes long after the available medical options have been exhausted. This is normal. No child wants to lose their parent — nor any parent their child — and the natural desire to keep this from happening sometimes overcomes our rational sides. Yet as doctors, we have a responsibility to our patients not to put them through costly and painful procedures that we know will have little effect, especially without their consent. This means helping families understand that when it comes to matters of treatment, their wishes and those of the patient may not always be the same — and that respecting a patients’ right to choose can also be an expression of love.

At present, many — including doctors themselves — are unwilling to have the hard conversations necessary for this truth to become more widely accepted. I once suggested to leaders at Fudan University Shanghai Medical College that medical students be required to take courses on death and how to talk about it, but my proposal was rejected on the grounds that the issue is still sensitive. Even so, I believe talking to patients about death is part of my job. In lieu of formal classes, I give occasional lectures in Fudan university and my hospital, in the hope of educating more people about this vital subject.

As humans, there is much that lies outside of our control. Yet while we may not have any say over the circumstances of our births, some lucky few of us will have time to prepare for our deaths. It is my hope that one day people will stop viewing this knowledge — and the difficult conversations that come with it — as a curse, and start seeing it for the blessing that it is.

As told to Sixth Tone’s Wang Yiting.

Translator: Matt Turner; editors: Lu Hua and Kilian O’Donnell.

(Header image: Yan Wenqing/Chinese Business View/VCG)