THE BLOG

Canada's Healthcare System Denied My Dying Mother Choice

09/10/2013 01:16 EDT | Updated 11/09/2013 05:12 EST

I boarded the 6 a.m. flight, medical papers in hand. It was late July 2012, and my mother had just been diagnosed with anaplastic thyroid cancer. I was flying out from Boston, where I live and work as a science journalist, to Vancouver, to meet with the oncologist.

The numbers looked grim. Median survival: four months. Almost always fatal.

There were active clinical trials ongoing at several major cancer centers in the US. These trials involve experimental new agents that doctors hoped would yield improved survival rates compared to routine chemotherapies. But my mom had already nixed the possibility of travel. She was going to be treated at the BC Cancer Agency. If she was going to die, she was going to die in Vancouver, she said.

That left only approved chemotherapies. The question was: which ones? In my stack of papers was a report from the Mayo Clinic in Rochester, Minnesota, where they had observed improved outcomes in patients who received two chemotherapy drugs, instead of only one.

The trial was small, just ten patients. But five were still alive several years after the treatment.

I arrived in Vancouver, excited to share the findings with my mom and her doctor. Maybe she could try this Mayo protocol and be in the 50 per cent who respond. But we were met with a bombshell. The CT scan revealed small nodules in my mom's lungs. The cancer had metastasized.

"There is no effective therapy for metastatic disease." That's what the scientific literature said. And although the Mayo doctors suggested that their protocol might work in people with metastatic ATC, there was no direct evidence. Their trial had excluded patients with signs of metastasis.

The oncologist came up with a treatment protocol: daily radiation in the neck, Monday to Friday, for a little over a month, with weekly infusions of the chemotherapy drug cisplatin to help sensitize the cells to the radiotherapy. After tackling the main tumor in her thyroid, he would up the dosage of cisplatin to tackle the metastases in her lungs. Or maybe switch to another drug called paclitaxel. But he didn't want to give both drugs at the same time.

The evidence base was too weak to indicate that dual agent therapy would benefit my mom, he argued. And the added toxicity of introducing a second drug was almost a sure thing.

Still, given the lack of scientific data one way or another, shouldn't it be up to my mom to choose for herself whether to pursue aggressive therapy, with all its accompanying side effects, or to receive the supportive care as proposed?

I asked the oncologist to talk with the Mayo doctor before making a final decision. I express shipped my mom's reports and scans to Minnesota, and the two physicians spoke briefly by phone. According to my mom's oncologist, the Mayo doctor agreed with the course of therapy as planned. However, I soon received an email to the contrary.

"I spoke with the involved medical oncologist the other day," the Mayo doctor wrote. "He was congenial, but the conversation was to me not so much reflective of any interest in consideration of any approach but that already in place... I offered to assist in any way he might wish, but got the feeling that he wishes none."

Some might think this was just a clash of physician egos -- and that could have been at play to some extent. However, I believe here I hit upon a basic philosophical difference between Canadian and American healthcare systems: Canada's unified public plan restricts patient autonomy, whereas the US gives much more freedom in treatment decisions to patients and their doctors.

My mom's oncologist didn't seem too interested in veering off the BCCA's standard operating procedure. And even if he wanted to, he'd have to get approval from the agency's board before fiddling with the regimen -- something he told me wasn't too likely to happen.

Last year, in its Anaplastic Thyroid Cancer Guidelines, the American Thyroid Association wrote: "Depending upon the directives of a particular patient... first-line therapy in advanced ATC could reasonably include [chemotherapy] drugs as single agents or alternatively in combination."

But that's an American outfit. This was Canada.

The BC Cancer Agency prides itself on a standard of care for each and every patient that yields consistent results for all. The BCCA's model works when results are consistently good. For example, when my friend's father, an academic in Vancouver, was diagnosed with non-Hodgkin's lymphoma several years back, he called around to Memorial Sloan-Kettering, the Dana-Farber and others, seeking treatment at the world's most renowned hospitals. He was advised that he had a great cancer center in his own city and that he needn't look any further. He received the latest anti-lymphoma drug at the BCCA and he has lived cancer-free ever since.

However, lymphoma treatment is almost routine. Anaplastic thyroid cancer treatment is not. It's a rare disease that accounts for only 1-2 per cent of thyroid cancer cases, yet is responsible for around half of all deaths from the disease.

Only a few hundred people are diagnosed with the disease each year in Canada, and the BCCA sees maybe a handful. According to an analysis published in 2005 of outcome measures of people diagnosed with anaplastic thyroid cancer at the agency, the BCCA's survival numbers are no better than the overall averages seen elsewhere.

It is my belief, as a Canadian who has lived in the US for several years now and writes about drug development and medicine for a living, that standard of care isn't good enough when standards of care are poor. Why stick to a treatment regimen for all patients when the results are so dismal? In the absence of anything better to offer, why not at least offer patients and their families choice? There are many things that I admire about the Canadian healthcare system. Inflexibility is not one of them.

My mother died one year ago today (September 10, 2012), seven-and-a-half weeks after her initial diagnosis. In the end, she didn't live long enough to receive full-dose chemo. If she had, my hunch, knowing my mother, is that quality of life would have been her top priority. Given a choice, she probably would have elected to receive just one agent, as the BCCA oncologist proposed to do.

But a choice was never hers to make.