Conversations About Medical Care

I read a really moving blog post today by a cancer patient. In it she described never being given the details or choices of having a "non-treatment" offered to her. In her blog she said, "I walked in with bronchitis and came out with cancer." During her six long years of struggling with cancer, she pointed out that no doctor ever gave her the option of not treating it.

I saw a lovely conversation about "selling medicine" from a group of physicians, they were conflicted about profiting off certain treatments... and some were simply talking about using "gentle paternalism" to convince their patients to do what is in their better interest.

My response to these physicians is - if you are going to "sell medical treatments", even gently, then why aren't you selling the option NOT to get the treatment and the implications of not doing so?" Patients deserve to hear all their viable options. Especially when it comes to cancer treatment. Additionally, many times treatment for chronic diseases is based on the doctor's attitude and experience with it even more than it is to do with how good a treatment it is for a patient. (I will not even go down the being influenced or paid by Pharma road, as we all know this is an ethical issue.)

Every patient should know if their access to health resources is being influenced by religious institutions IF their treatments are being given there. And yes, many hospitals are religious based and there are few other university or state based options available. So this matters. And every patient deserves to know if and how much contributions are being made by a Pharmaceutical company (or other medical device company for a surgeon). We aren't taught to think that way. But it becomes a bigger deal when your treatment matters.

One breast cancer patient found out her breast cancer team was trying to wrap up a long term study and she simply fit one of the under-represented age groups in the study for one the medications they were examining. This made her doubt her treatment and she began to invest in other treatment options and seek second and third opinions elsewhere. Most patients wouldn't know how to do this. And most wouldn't know how to find out if their team of surgeons and oncologists was on a study and what medications they were intending to use. Ultimately she felt they were not intending to use a treatment plan in her better interest and today she is in full remission.

Doctors don't always tell you the full scope of what they are doing. And yes, many of them are champions and want the best for you. How to sort it all out without getting beat down?

Meanwhile, other stories exist where patients who have been pressured, even in their own "better interest" to have treatments - regret the treatments and blame the doctor later. Or they blame themselves for not having ALL the options. Or they simply feel like they weren't part of a team making decision. It is hard to be "empowered" or have "compliance" (which is a word I hate) or committed to one's health when someone is forcing you or even sheistering you into a treatment.

Very few physicians sit down with their patients and say, "If my wife were going through this, I would want her to have all the necessary facts. I would want her to have social support. I would want her to hear ideas that I even disagreed with so I could explain why they might not be a viable option for her." This takes time. And quite frankly, it takes team work. And - most patients don't respond well to "bad news."

It is hard to breathe in through unwanted news. To listen. To HEAR it and not forget it. No one teaches patients how to write it down. To have your doctor write it down and not just hand people a wad of shiny pamphlets or "go to this website it will explain everything."

We as patients and patient advocates, and the entire healthcare community need to be better willing and able to have conversations like this. Not just doctor to doctor or suspicious patient to patient. How to start the conversation? How to have real dialogue, trust, and relationship with our healthcare providers and doctors? How to have two way respect and value?