A few months ago, when Dr. Thomas Lee logged in to his patients' electronic medical records to renew a prescription, something unexpected popped up. It was a notice that one of them had died.
Lee, a primary care doctor at Brigham and Women's Hospital in Boston, was scheduled to see the patient in three days.
"I was horrified," he says. The patient had been in his 80s, and his wife had died a few months before. "And everyone in medicine knows that when someone dies, there's an increase in risk of death for their spouse over the next six months."
He wanted to know what had happened, but he couldn't find anything in the medical records or in a Web search. "I just felt really guilty that I had not pushed harder to get him in sooner," says Lee. When he couldn't find out anything, he decided to phone the man's house to offer condolences — maybe even to apologize.
"So I called, and to my shock he answered," says Lee. It was the patient, a retired professor living in Boston.
"I assume you're calling about my death," the man said.
"It gave me goose bumps," says Lee. "I said, 'Yeah, I guess I am.' And then he explained to me what had happened."
The professor explained that he'd been dealing with his own death for the past two weeks. It all started when he went to the ATM, only to find that he no longer had access to his bank account. When he went to the pharmacy to pick up his medicine, he found he no longer had health insurance.
Soon after, he got a letter in the mail from the Social Security Administration offering condolences about his recent loss of life and informing him that his monthly payments would end and that payments made since his "death" a few months prior would be removed from his bank account.
Because of a clerical error, the Social Security Administration believed he had died in December. That information had quickly spread to banks, pharmacies, hospitals. His doctor's appointments had been wiped out and other patients had taken his place. Essentially, he'd been locked out of his life.
"It was a major nuisance, let's put it that way," he says. And to add insult to death, says the professor, "Social Security actually gave my date of death as the same date as my wife's, which was really creepy. Not pleasant to see."
He spent weeks on the phone trying to correct it all. In the process (which was reminiscent of a certain Monty Python skit), the man learned that because he had supposedly died, all his information — his full name, Social Security number, birthday and supposed death date — had been released to the public in a document called the Death Master File.
The publication of the file is a measure taken to prevent fraud, such as someone taking out a credit card in a deceased person's name. But for those who are still living, the file is a recipe for identity theft. (That's why we're not naming the man.)
"I'm keeping an eye out fairly carefully to see if anything goes awry," he says. "But it's also somewhat amusing to know that you really are alive when everybody thinks you're dead." He even got a hug from a surprised doctor who didn't expect him to show up for his canceled appointment, let alone in relatively good health.
It took about two months to resurrect him in the federal system.
And as Lee wrote this week in the New England Journal of Medicine, what happened to the professor happens to thousands of people each year.
"When we called the information system folks to bring him back to life, the response that we got was, 'Oh no! Not another one,' " says Lee. There's even a frequently asked question about it on the Social Security Administration's website.
"And this is where I made the transition from thinking about this as something funny to something important," says Lee. "We have a society where information travels quickly and there are many great things about it, but what if that information is wrong? There just is no process in most information systems for saying 'Oops, we were wrong.' "
In 2011, an audit found that about 1,000 people a month in the U.S. were marked deceased when they were very much alive. Rona Lawson, who works in the Office of the Inspector General at the Social Security Administration, says that number has gone down. It's now around 500 people a month.
"But for those 500 people, it's still a big impact on their lives, so we'd like to see the number even lower," she says. Because most of them are Social Security clients, she says, they likely tend to be retired and over the age of 60.
Lawson says 90 percent of the time, the cascade of misinformation starts with an input error by Social Security staff — a regular mistake on a regular office day that just happens to kill a person off, at least on paper.
And she says the professor's case, where someone is given the death date of their spouse, is fairly common.
"Oh, yes," says Lawson. "That was a very common cause for the errors that we saw."
In 2011, Congress passed legislation to remove a few pieces of information from the Death Master File – the state, county and ZIP code where a person lives or lived. And in 2013, based on recommendations by Lawson and her colleagues, Congress passed another piece of legislation to keep a person's information from becoming public until 3 years after their death date. The change will kick in in late November.
"So, that's an improvement — more time to get it right before it gets into the public domain and starts spreading to all the different websites and so forth," says Lawson.
She says the information would still go to authorized users like banks and credit reporting agencies, so while the change might keep back identity thieves, it wouldn't do much to prevent the headache that the retired academic went through.
"At least we can keep the information restricted to those who have a right to know it and not just everybody that has an Internet access point," says Lawson.
But wait a minute. Putting aside the headache of having to convince everyone you're still alive just so you can withdraw cash from an ATM, or pick up your prescriptions, might a fake death be seen as an opportunity? Maybe to disappear to a tropical island and start a new life?
"I never thought of that," says the professor. "But that might have been an interesting way to proceed."