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Last year, I listened to an amazing episode of This American Life in which a Chinese-American woman told the story of her grandmother, who was dying of cancer but didn’t know it. Her family knew but asked the doctor not to tell her so that she wouldn’t be stressed out in her final days. They even convinced a relative to move her wedding date up to a year earlier in order to give the family one last chance to see the grandmother before she died. As you might imagine, it was a pretty awkward wedding where everyone was crying but not necessarily tears of joy.
It really made me think of whether or not I’d want to know if I had a month or a year left to live. Everyone suggests to live each day like it’s your last, but is that really that fun? I actually enjoy vegging out in front of the TV, playing a game on my phone while watching garbage television, but if I knew I was about to die I couldn’t enjoy that because I’d feel guilty. “I SHOULD be skydiving, or robbing a bank, or otherwise sucking the marrow out of life.”
Anyway, the point is that it’s complicated! But now there’s a new study to shed a bit more light on the issue. The study was done in China, where it’s much more common for the situation that happened in This American Life, where family members can hide the fact that a person is dying. In that study, researchers found that only 1 out of 10 terminal cancer patients actually didn’t want to know they were dying.
Compare that to the nearly 40% of patients who actually didn’t know their negative prognosis and you realize how bad the tradition is in which families hide the prognosis from the dying. That’s a huge number of people who would actually prefer to know that they’re dying but who have no idea.
This is a huge issue, since figuring out how we’re going to slough off this mortal coil is maybe one of the most important things we all have to decide. I have one friend who already built his own coffin so that his family didn’t have to get ripped off by the funeral industry who sell you $10,000 boxes to get cremated in. Meanwhile, I don’t even have a will, let alone life insurance. I just assume my dog will eat me when the time comes.
Even more than figuring out what is going to happen after you die, knowing you’re going to die also gives you a chance to figure out how you want to spend the last of your days. Not just in terms of whether to go skydiving or watch Housewives, but more so in terms of what drugs you want to be on, how lucid you want to be, whether you want to be in the hospital or have a person taking care of you at home, whether you want to end things when you know what’s happening or whether you want to be on life support for 10 years. These are important decisions and they require planning.
It’s easy to say that we should take this data, accept that the vast majority of people want to know that they’re dying, and make a rule that says every person should be told regardless (which is the law here in the United States — a doctor has to be honest with the patient). But maybe the better takeaway here is to realize that a significant minority of 1 in 10 people doesn’t want to know, and the optimal healthcare system would be able to figure out who those people are and abide by their wishes. It might be ascertained just by asking, or we might be able to identify people like that through psychological surveys to make sure we only even offer the option to the sort of people who would be interested in that kind of thing.
For me personally, I know I’d want to know. If I opted out of knowing, I’d always assume the worst anyway so I’d live every day in a depressive state assuming I was about to die. Even if I had just been into the doctor for a sniffle or a splinter removal. But I’m pretty sure it would be clear from any psychological profile done on me that that’s the case, since I’m pretty consistent — I always want the absolute truth over anything else.
I’m interested in what you all think, though — if you had a year to live, would you want to know? Or would you prefer to think that maybe you had a chance to beat whatever disease you were currently battling?