If you could learn when you’re likely to die, would you find out? Or would you rather it come as a complete surprise?
You might someday be faced with this question. A group of Ottawa-based researchers is developing a simple, online tool, aimed at the frail elderly and people needing home care, that predicts approximately how long someone might have to live.
Doctors have long given their patients a prognosis, but computer-based tools like this are promising to be more accurate, more easily interpreted and more readily available than the old way.
It works like this: an individual, or their caregiver or loved one, answers a few questions about their medical conditions and symptoms, personal characteristics like age and sex, as well as their ability to complete ordinary tasks such as meal preparation and housekeeping.
Then the survey displays an easy-to-understand estimate, based on the data of thousands of patients with similar characteristics, of how long that person has to live. It’s not perfectly accurate, of course, as everyone is different and nothing can predict the future. But it’s a pretty good guess, based on the answers to the quiz.
This calculator is still being tested and likely won’t be available until sometime in 2019, when it will be posted on a public website where anyone can access it.
“Some people would say that it’s somewhat morbid to tell you that you have such a short life expectancy,” said Dr. Peter Tanuseputro, an investigator at the Bruyere Research Institute and the Ottawa Hospital, who is leading the calculator project.
“Some people don’t want to know and they’re content to live their lives not knowing,” he said.
“I think the majority of people do want to know.”
Although his survey asks repeatedly if you’re sure you want to get this information before providing it, he believes most people recognize that it could be useful. “When you have a minimal amount of time, you want to maximize the amount of time you have left.”
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Dr. James Downar, head of the division of palliative care at the University of Ottawa, put it this way when Global News asked him why people would want to know when they’re going to die:
“If I told you that you had only six months to live, would you still be interviewing me right now? Or would you go home?”
“I don’t know what you’d do with that information, but I’m pretty sure that you’d do something with it. People want to spend time with their families. People want to have important conversations. People want to really reflect on their life and what gives it meaning.”
In his experience, people react better than you might expect to hearing this kind of information. And not only does it prompt them to have important talks with their families, or go back and visit their childhood home, it also helps to inform their medical decisions.
If you were thinking about getting a procedure done, where you might only see a benefit in the long term, knowing that your life is going to be short might mean that you decide it’s not worth it, he said.
Tanuseputro agrees. “If you have a patient in front of you and they have six months to live, or one year to live, should the discussion be continuing to try to cure, cure, cure with chemo and radiation and all these therapies that have side effects? Or should the conversation be let’s try to make your life the most comfortable and meaningful it can be?”
In Canada, a lot of people arrive at the end of their life without any preparation, said Downar. And this means that they often have very poor-quality care and might die in an emergency room when they would have wished otherwise.
“Most people find out that they’re at or near the end of their life very, very late, when it may be too late to intervene, they may have been enduring tremendous suffering, or received all kinds of medical care that they wouldn’t have wanted had they known, with all of the burdens that that entails.”
Having an idea of how long you might have to live also means that you can discuss palliative care options with your physician. “In Canada, in our society, we have a hard time talking about death and dying,” said Tanuseputro. Tools like this can help to start the conversation.
It’s also important to make sure that palliative care options exist for anyone who gets this information, he said.
For his part, Downar said he would want to know his life expectancy. “If I’m ever in a situation of illness, I would want to have all the information I can at my fingertips.”
“I have to think that having more information is better than having less. It might not change your decisions about anything, but maybe it will.”