ASCO, WHERE HAVE YOU BEEN?

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The organization that sets standards for cancer care does not include cognitive issues in their patient consent document 


Last Thursday I was in Arlington, VA at the National Cancer Institute’s 6th Biennial Cancer Survivorship Research Conference. I had been asked to speak about cancer and cognition. Specifically, the organizers wanted me to comment on the “disconnect” between the research/medical community and the patient experience.

That wasn’t hard to do. As I told the audience, I know our book has made a difference. Yet I continue to receive letters from patients and former patients telling me that although they now understand what’s happened to them cognitively as a result of treatment, they can’t seem to get their medical teams to take their concerns seriously. A common thread is, they bring up their memory issues with 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 American Society of Clinical Oncology (ASCO) 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 (you'll find the actual document here):

• Nausea/vomiting 
• Hair loss 
• Low red blood count 
• Fatigue 
• Risk of infection 
• Risk of bleeding 
• Constipation 
• Diarrhea 
• Mouth and throat sores 
• Skin effects 
• Muscle/bone effects 
• Nerve effects 
• Kidney/bladder effects 
• Sexual effects 
• Heart effects 
• Lung effects 
• Reproductive/fertility effects 
• Other 

It doesn’t take more than a single glance 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 the 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 other professionals who care for cancer patients.

And even though ASCO is highly respected and tremendously valuable, at least on this point, it doesn’t seem like it’s doing a very good job. If the professional association that sets standards for oncologists doesn’t seem to be aware of cancer-related cognitive dysfunction, 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 this 2008 consent document would take two seconds. But it’s really not about that. It’s about awareness. It’s about leadership.