I was talking to a friend of mine from China a couple of days ago. His wife’s cancer has spread. He was seeking advice on what next steps to take. My friend hasn’t told his wife about her worsened condition and had no plan to do so because she had indicated years ago that she wouldn’t want to know if she had cancer.
After the phone call, I turned to Joe and asked, “Do you want to know if you have cancer?”
“Of course I want to know!”
This reminded me of my grandma. When she was diagnosed with late-staged uterus cancer at the age of 88, her children collectively decided to tell her that it wasn’t cancer and she’d get better. Come to think of it, it’s a very common practice in China. The Chinese culture puts more emphasis on the family than the individual. Younger generations are frequently reminded by the older ones that “Your family knows and does the best for you!” China also operates under a different medical system. People don’t have family doctors. When they need to consult a doctor, they’ll see whoever is on duty that day in the hospital. In the case of serious health issues, people have to seek out experts through personal network, followed by monetary and luxury gifts to the doctors. As a result surgeons have been made filthy rich in the last two decades. Doctors communicate openly and freely to the patient’s family members and leave the decision to the family as to how much they want to share that information with the patient.
Obviously the opposite holds true in America. The HIPAA Privacy Rule requires appropriate safeguards to protect the privacy of personal health information, and sets limits and conditions on the uses and disclosures that may be made of such information without patient authorization. That’s why it’s important to make a living will and specify with whom the medical professionals can share our medical history. Otherwise our family will be kept in the dark in the event we are incapacitated. I honestly thought the American laws pertaining to protecting the privacy of individuals were extreme when Joe and I worked with Natalia on our estate plan.
Which way is better? If you ask different people, you are likely to get different perspectives. The Chinese culture doesn’t encourage self-expression. I think one of the reasons why so many families choose to conceal their loved ones’ incurable illness is because although the healthy are willing to do whatever it takes to care for the sick, they aren’t prepared to handle the emotional turmoil. Discussing death personally and openly with a family member is taboo. Joe’s sister was diagnosed with breast cancer more than ten years ago. After the surgery, she stayed in the hospital for a few weeks. Her beloved son who was about twenty at the time, never went to the hospital to visit his mother. It wasn’t because he didn’t care, but because he was scared and didn’t know what to do.
All of us who live under the American health care system are unlikely to be kept in the dark. I believe we should be informed if we are terminally ill and only have a short time to live. Then we can plan the remaining days of our lives, and be an active part in assessing what treatments to undergo. But up to this day, I still don’t think I could have looked Grandma in the eye and told her that she only had a few more months to live. I’d rather sob privately than watch her overwhelmed by sadness and agony. Grandma was an amazingly strong lady, but all her life she feared death. Maybe she would have responded with her signature strength and endurance if her children sat her down and told her the truth. Maybe she’d have told them there were something she had always wanted to do but never got the chance. Maybe her wish could have been fulfilled. We’d never find out because we made the decision to tell her a loving lie till the end.
I hope if I had to be told someday that I had cancer, I wouldn’t take the news as if it were the end of the word. Instead I’d be able to say to myself and my family, “I’ve lived every day of my life. I’ve loved each one of you with everything I have. I’ll continue to fight and live because from this day on, everyday will be a bonus!”
I don’t know if I’ll ever possess that kind of internal strength and peace. But as each day goes by, I hope I am heading in the right direction: a few steps forward, and a step backward.
I admire my friend’s wife. These days she isn’t asking questions, or researching on the Internet about her illness. Instead she completely trusts that her husband will make the right decisions with regards to her health, which speaks volumes about their relationship.
Death is a personal thing and everyone deals with it in their own way. Instead of dreading it, the best way to face the imminent death is live everyday to the fullest as if it were a gift.