Monday, October 15, 2012 |
First aired on The Current (29/9/12)
One day, when she was a graduate student, Julie Devaney had 12 bloody bowel movements in 16 hours and went to an emergency room at a Vancouver hospital. She thought that the visit would make her better. Instead, it introduced her to endless frustration, dozens of inattentive and overworked doctors and nurses, and an overcrowded system that hurts those it's designed to help. Armed with a decade of experience, one less colon, a master's degree and a different diagnosis, Devaney decided to do something about it. She became an activist and began telling her story across the country, calling for change in the Canadian medical system. This journey became a performance and now it's also a book, titled My Leaky Body: Tales from the Gurney.
Devaney has Crohn's disease, an inflammatory disease of the bowels that has no cure. Today she has doctors and specialists she trusts completely. But that wasn't always the case. She was originally diagnosed with a similar ailment, ulcerative colitis, and along the way, she encountered all kinds of doctors. What struck her most was that the system wasn't designed to listen to her. "In the best cases, I've definitely had doctors who said, 'Oh, thank you for explaining that so clearly. What about this? What about that?' and we have a back and forth," Devaney told The Current guest host Jim Brown in a recent interview. "In the worst-case scenarios, they've walked out, changed notes on my charts without telling me."
Modern medicine is about managing a patient's disease, and Devaney believes that this approach ends up being about managing the patient. She was often treated as though she wasn't the expert on her own body and her own medical history. Whatever doctor was assigned to her in that moment -- even if they had just met -- was. The end result was often ego wars, unnecessary tears and searches for second, even third opinions. "I don't think that should be the way it is," Devaney said. "We should be collaborating. We should be on the same side, but it often ends up being an actual conflict."
Devaney realized that the system wasn't helping her, and it wasn't helping those who were supposed to help her either. Emergency rooms operated on "skeleton staffs" and weren't equipped to deal with chronic patients like Julie. They wouldn't have the space to admit her or have the medicine she required to deal with her pain. "When people come in with things that aren't that acute kind of emergency like a car crash or a heart attack, it's really hard for them to negotiate what to do for the patient."
Devaney also believes doctors aren't getting the support they need to adequately deal with that they see every day. "They don't get the opportunity to say, 'I don't know' or to go after a really, really stressful encounter and have 10 minutes to debrief with their colleagues and figure out what could have worked better," Devaney said. "There's always this hyper judgment and either it's wrong or it's right and they feel like they are under this tremendous scrutiny." The end result is a tired, overworked physician who isn't adequately trained to communicate and collaborate with the patient and a patient who is ill, scared and doesn't feel valued or listened to. It's a situation of "lose lose" for everybody. "There's people dying in front of them and they're not given sufficient resources to even cope with that for themselves."
So what should be done about it? First, Devaney would like to see medical students receive more training in communication. "There's a much, much bigger focus on the physiology of illness, disease, bodies and not enough on those really core communications skills," she said. Athough acquiring diagnostic skills is important, it's also important to be able to communicate "so that you can treat a patient and both be in a good place by the end of the encounter."
She'd also like to see health-care professionals get more support. Emergency rooms should be able to handle a chronic care patient. Doctors and nurses shouldn't work multiple shifts in a row. And if they lose a patient, there should be resources to deal with that.
Finally, Devaney would like to stop the movement towards privatization. "There's been piecemeal privatization in every province, either of services or core care in some areas," Devaney said. She would like to see a system "where there are enough nurses in emerg, doctors aren't working double and triple shifts, [and] there's enough space for people when we are ill so we're not constantly having to fight for care. Those are the basics."
Since starting her My Leaky Body tour, Devaney has met people across the country who agree with her -- and she's starting to see some change. But it's not happening fast enough, and we have yet to figure out the best way to make radical changes to improve the system. "There's actually a consensus that this needs to change," she said. "The question is just on how we can do that together."