This guest post by Idelle Davidson originally appeared in the Huffington Post as “ASCO, Where Have You Been? The organization that sets standards for cancer care does not include cognitive issues in their patient consent document.”
Last month, I was in Arlington, Va. at the National Cancer Institute’s Sixth Biennial Cancer Survivorship Research Conference. I had been asked to speak about cancer and cognition, the topic of my book, Your Brain After Chemo. Memory issues are one of the potential side effects of chemotherapy and the organizers wanted me to discuss the research/medical community’s seeming lack of attention to a phenomenon that affects quality of life.
That wasn’t hard to do. I continue to receive letters from readers telling me that although they now understand what’s happened to them cognitively as a result of cancer treatment, they can’t seem to get their medical teams to take their concerns seriously. There is a common thread: They bring up their memory issues to their doctors only to have their worries waved away, dismissed, as if it’s all a figment of the imagination.
To illustrate this disconnect, I showed a slide of a sample patient consent form that I downloaded from the ASCO (American Society of Clinical Oncology) website. ASCO offers this form as a service to their members. Oncologists can then use the form to have their patients acknowledge the risks of chemotherapy.
So what’s on this form that patients are asked to sign? Basically, it’s a list of all the potential side effects (see the actual form here):
· Hair loss
· Low red blood count
· Risk of Infection
· Risk of bleeding
· Mouth and throat sores
· Skin effects
· Muscle/bone effects
· Nerve effects
· Kidney/bladder effects
· Sexual effects
· Heart effects
· Lung effects
· Reproductive/fertility effects
It doesn’t take more than a glance at the 2008 form to see what’s missing. And of course, that would be language such as “memory or other cognitive effects.” That warning has not been incorporated into this outdated consent document even though cognitive issues can be far more debilitating than hair loss and nausea.
Now this is ASCO, a 30,000-member strong organization made up of oncologists and oncology professionals that sets the standards for patient care worldwide. It is their mission to advance the education of physicians and others who care for cancer patients.
And even though ASCO is highly respected and tremendously valuable, at least on this point, ASCO has gone AWOL. If the professional association that sets standards for oncologists doesn’t seem to concern itself with timely disclosures, is it any wonder that clinicians in their hospital and community practices dismiss their patients’ concerns as frivolous?
Adding another bullet and line of text to the consent document would take two seconds. But it’s really about so much more than that. It’s about closing the gap between research and patient. It’s about leadership.