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'TROUBLE STARTS WHEN YOU LEAVE THE CONSULTING ROOM'

MESSAGE FROM AN 'IMPATIENT PATIENT'

Globe and Mail Update

A passage from Globe and Mail publisher Phillip Crawley's recent Penfield Lecture, entitled The Impatient Patient: A Consumer's View of Canadian Health Care, and delivered at the Montreal Neurological Institute.

Six years ago, I faced a choice. My wife and I had been to one of Canada's leading cancer experts. His advice was that my wife, just diagnosed with metastatic breast cancer, should cease to bother with therapy.

Enjoy what time you have left, instead of making yourself feel ill through another treatment, he said.

That was the summer of 2000. My wife died in July, 2004, aged 58.

At the time, his advice seemed outrageous. We left feeling incensed, and vowed to find a doctor who would offer us more hope. Lots of chemotherapy and radiotherapy ensued, at another hospital.

How much difference did it make? Would we have been better citizens if we had opted to refuse expensive end-of-life treatment? Health economists argue that too much money is being spent on prolonging life for a few months. Big costs, small gains.

In a completely rational world, they are probably right. But try telling that to a woman with a 12-year-old son, like my wife. Most people in that situation are going to fight for every bit of help they can find.

When my wife was spending long hours in the waiting rooms of cancer units, she felt lucky that she had some options not available to people sitting next to her.

One of her friends was a young woman who was self-employed -- her choices were not so good: She could have her ovaries removed, at no cost to herself; she could take a cheap drug with unpleasant side effects, or take the new improved drug, which would cost her $400 a month. She picked the cheaper drug, which made my wife feel guilty about her good fortune.

The quality of the individual doctors you meet is first-class. But the trouble starts when you leave the consulting room, and have to fight for attention in the bureaucratic muddle that besets most hospitals.

It turned my wife into an agitator and an advocate for patients' rights -- the only way she had some say in getting the system to respond to her needs.

It's certainly not a situation that Canadians feel comfortable with -- they want to know that the weak will be taken care of, when they lack a strong voice, influence, or money.

So why isn't fixing this a larger priority? Who stands up for the patients caught in the system?

Instead of setting soft targets to impress the public with their progress on waiting times, our leaders should be making sure they safeguard the most important assets in the system, the people who have a real chance to come up with better treatments. But that's a much more complicated concept to get across to a mass audience than simple slogans like "reduce waiting times."

Let's take a look at one example of how misleading that can be. A year ago, the provinces set a benchmark for radiation oncology. The target was: Radiation therapy must be delivered within four weeks of a patient being deemed ready to treat.

What are the results so far? In Manitoba, wait time for radiation therapy is down to one week from six weeks in 1999. But in Edmonton, prostate-cancer patients are waiting 14 weeks for a first appointment with an oncologist.

But the real question is -- why choose four weeks as the benchmark? The radiation oncologists themselves recommend a maximum of two weeks. And, remember, the four-week clock doesn't even start ticking until the patient is deemed "ready to treat." That's after having waited to see the oncologist and having the tests done.

So meeting the target may not be all that it's cracked up to be.

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