by Alan Cassels
“I don’t know how to lay an egg, but I know when it’s rotten.” That’s the translation of the title of the just-published book by Quebecois journalist Josee Blanchette whose clarion voice is creating waves in the cancer world. (Je ne sais pas pondre l’oeuf, mais je sais quand il est pourri.)
Facing a cancer diagnosis herself, Ms. Blanchette decided to look closer at the treatment offerings and she was astounded at what she saw. By drilling into clinical trials, she found that many of the modern cancer drugs on offer do almost nothing to alter the length and quality of a person’s life. She also found that most oncology experts seem unable to divert from the guidelines they are told to follow and that the indifference to patients’ deep wishes to know the truth about their disease means that a lot of heroic, but degrading, care is dealt to people at the end of their lives. And, of course, the massively powerful pharmaceutical industry is there giving a decidedly dark tone to the enterprise of modern cancer care.
As a media personality herself, Ms. Blanchette is articulate and forceful. She appeared on a number of high profile Canadian media outlets talking about her findings, including CBC radio’s Sunday Edition. In a documentary called Saying No to Chemo, she discussed, among other things, her decision not to undergo chemotherapy. She cited an Australian study published in 2004, which looked at five-year survival rates for those who underwent chemo for 22 different types of cancer. With success rates averaging between 2.1 to 2.3 percent (treating adults) in addition to the well-known fact that the effects of chemotherapy range from the merely uncomfortable to the fatal, she found comfort in refusing further chemo. But what a sin that was.
Talking to the media was like throwing a hand grenade into the cancer world. Oncologists went ballistic, jumping all over her, saying she was going to scare people off their treatment. Vilified in the press and accused of being a hack for holistic treatment that promotes organic vegetables and turmeric, Ms.Blanchette discovered something very vital: that when journalists look too closely at medical care and point out all its failings, the truth of what they find can be measured in the size of the backlash. And this backlash was fierce.
What Josee Blanchette found is supported by other research. Last month, in a series of articles, the BMJ (British Medical Journal) looked closely at those cancer drugs approved in the US and Europe between 2008 and 2013. It found that most were approved on the basis of surrogate outcomes (ie: things like tumour shrinkage or a blood marker that often doesn’t correlate to survival or quality of life). One major UK newspaper summed it up with this headline: “The costly cancer drugs that don’t help patients.” One oncologist responding to the BMJ articles said the system of cancer care in the UK “encourages doling out of chemotherapy without thought.”
Despite these studies questioning the basis of much of what passes for cancer care in the modern world, is there a rich and energetic level of debate among those who are charged with dealing with cancer? Sadly, there seems to be little debate, or if there is, very little reaches the public airwaves. I wonder if debates within the cancer world could be shared? (Maybe any oncologists out there could contact me and tell me what they are, hint, hint.)
As the #2 killer (beside heart disease), Canadians should all be concerned about the quality of cancer care in this country and the grossly inflated costs for the newer, high-tech cancer drugs, which many would admit are toxic, minimally helpful and often make peoples’ final months sheer misery.
The media cannot escape blame here. Many media outlets don’t have the courage to do what CBC did in airing the documentary; they are too scared to upset the cancer orthodoxy. Much of the reporting covering cancer therapies is lame and propagandistic, describing “miracles” and “cures” and hyping treatments far beyond what is reasonable.
You’ve seen the stories, often featuring a sympathetic patient who has a desire to ‘do anything’ in waging their personal war on cancer. By the way, the military analogy about fighting “wars” on cancer is repugnant and doesn’t advance our understanding of the complexity of cancer. But it’s great grist for fundraising in cancer charities or building markets for new drugs. Often, the patients featured in these stories are lucky enough to show some response to a drug, but they are almost never the patient who faces the drug’s adverse effects – the one who ends up in the ICU with kidney failure or whose life ends earlier because of a drug’s fatal toxicity.
Most people given a cancer diagnosis find that their world suddenly becomes numb. Everything else in your life goes straight into the backseat. You’re not in the driver’s seat any more and, from now on, cancer care is basically ‘what you do.’ Your life becomes a series of appointments, scans, biopsies and tests with drugs, more drugs and even more drugs to deal with the side effects of the side effects of the drugs you’re told are essential. Then there is the waiting, the uncertainty and the many unanswered questions, which get repeated and bounced around inside a team of professionals until you feel you’re losing your mind because no one seems to be talking to anyone else. It’s like hell, but probably worse.
I’ve had two very close people in my life die from cancer and I can tell you there is no lower time in your life than when you are a witness to someone facing terminal cancer. In the cases of my family members, there was a declared, and strongly supported, desire for “no heroics.” There were no last-ditch efforts at doing this or that, no heavy-duty toxic drugs to deal with and minimal travelling back and forth to clinics and hospitals for doctor visits and X-rays and all those things that define a cancer patient at the end of their days. Their care to the end was excellent, compassionate and attentive, but it was minimally invasive.
What I saw in the death of my loved ones by cancer was a dignity that I think is often stripped from people. This dignity is born of acceptance and tolerance, with the knowledge that though you’re going to die, your job comes down to one thing: enjoying the days you have left with the people you love. Many patients who face the painful side effects of cancer therapies will do so because they feel “that’s the price to pay.” They may be told the therapies on offer are their “last chance.” Many will struggle with the toxicity of those therapies, but feel they have to tolerate it, at great cost to their dignity and the quality of their few remaining days.
In healthcare, people often discuss “patient preferences” and the importance of the patient’s desires when it comes to determining their course of care. Sometimes, “what the patient wants” is at the centre of the orbit and good physicians will always circle back to it, saying, “This is what you said you wanted; do you still want it?” Other times, it will be paid brief lip service, as in, “Yeah, yeah, we know what you want, but you gotta keep taking that drug because your hemoglobin is blah, blah, blah…” Numb.
What to do?
A recent essay in the BMJ on this subject of cancer care may have nailed the one key thing that needs to happen. An *article by BMJ editor Tessa Richards, who was treated for cancer, stresses how important it is for the public to know about the problems, and even scandals, in cancer care. Pretending things are just ducky is no way forward. She suggests that, if we really want to serve patients, we need them involved in research and medical conferences. We need their voices and we need them telling their stories.
Josee Blanchette may be vilified by the cancer industry for speaking the truth, but it is a truth that needs to be heard more often and by more people, hopefully before any of us have to face the cold, hard face of a cancer diagnosis.
* The responses to the “cancer drugs scandal” must fully involve patients www.bmj.com/content/359/bmj.j4956
Alan Cassels is a pharmaceutical policy researcher in Victoria who has lost his father and a sister to cancer.