Amy Berman, a geriatric care expert and cancer patient, is interviewed about her diagnosis of Stage 4 inflammatory breast cancer:
Most people go to their clinician, and they wait to be told what to do. They don’t ask about what the potential benefits are, what the different options are, what it’s going to make them feel like now, what it will make them feel like later.
Not only just their diagnosis, their prognosis: What’s the likely course of the disease, and will anything that you’re doing change that? Nobody knows for sure. But I think it’s fair to say that these clinicians have a tremendous amount of experience and understanding what the likelihood is. There certainly is a lot of evidence to tell people what likely will happen. We consumers are entitled to that very basic information. We are part of the decision-making because we’re the ones who live with the consequences.
Cancer is an incredibly complex disease that involves both clinical and emotional components – and we’re very rarely helped with the latter. We do have patient support groups that step into this gap with their depth of experience and street knowledge. But when it comes to a finite diagnosis, or the grief stage that follows either in tandem or after, we have great difficulty confronting the issues with ourselves and with each other.
Communication, the component that we often complain is missing from the patient-physician relationship, sometimes fails us in this conversation. We are at once convinced of the greater mythology of cancer and its uncontrollable and unconquerable nature as well as our need to constantly seek second, third, or even fourth opinions while continuing to look for cure.
The interview brings some of these issues to the front especially those of pain management and support therapies in a first person account. It also discusses moving treatment from “curative” to “carative” where some of us will live with the disease rather than trying to eradicate it.
I truly have no idea what my decision would be if i was faced with a definitively poor prognosis. I tend towards the aggressive and would never want to be accused of “giving up” or “surrendering” to the disease. But that ‘s just language that fits neatly into the military mindset of doing battle. And cancer is just not that tidy.
Maybe its time we added that to the communication process as well.
Artist in Plein Air 1910
by Charles Webster Hawthorne