Truly Informed Consent (For Me Anyway)

I've made a contract with myself

Doctors are supposed to give patients informed consent.

Informed consent is the process that should take place between patients and their doctors during which the patient is told **all** of the relevant information about the risks and benefits of any given medical procedure or treatment. Before the patient signs a consent form, the doctor is ethically responsible for making sure the patient is aware of not only the risks and benefits of the proposed treatment, but also the alternatives.

I’m not sure I’ve ever been given truly informed consent. Have you?

Instead of informed consent, when I was a young mom, I was told what to do by doctors. My questions were met with incredulity. And bullying.

A few examples:

1️⃣ “Ready for his circ?! Sign here and we’ll be on our way!” a postpartum nurse said to my friend who’d just had a baby boy.

Not: “This is an elective procedure. Here are what we believe to be the reasons why it is of medical benefit. Here are the risks of doing it—one in 500 baby boys will suffer an acute side effect. Here are the options…”

2️⃣ “Time for the hepatitis B vaccine!” a hospital nurse said, bustling into the room a few hours after our first baby was born.

No conversation about why the baby needed this vaccine, the risks of vaccinating the baby, or the benefits.

Not a single word about the alternatives (delaying this vaccine, waiting until our newborn was older), or anything else. Just an attitude of “you have to do this and do it right now.”

We decided to wait and talk to our pediatrician.

This was in July of 1999. Two weeks later we found out at the doctor’s office that the hepatitis B vaccine had been temporarily suspended for newborns.

“It’s a good thing you didn’t get it,” she said in the most off-handed way. “I’ve got a fax on my desk saying to hold off for now.”

3️⃣ “If you don’t follow my advice,” a dentist told me about our preschooler who had a rotten front tooth from goofing around in the kitchen and hitting it on a glass milk bottle, “the dead tooth will cause an infection that will travel up the optic nerve and into the brain. Your child will go blind.”

The price tag was thousands of dollars.

We chose to let the baby tooth fall out when it was ready.

This particular child happens to have the best vision of anyone in our family.

I have cancer

It’s easier to be a patient advocate than it is to be a patient. As many (most?) of you already know, I’m on a cancer journey. Lucky me.

It hasn’t been easy. And I’ve found that I’ve been doubting myself, unsure of the best path forward, and wanting—desperately—to make the best decisions.

When people die from cancer, the patient is usually blamed

Some people will follow all the allopathic advice when it comes to cancer and go into remission be fully healed.

Some will go all natural and be fully healed.

Some will do a combination and … be fully healed.

Others will follow all the allopathic advice and die.

Still others will only try alternative approaches and die.

And of course there are those who do a combination of allopathic medicine and natural treatments who also … die.

We’re humans, not statistics

Each of us is a human, not a statistic. Our bodies are all different and every single one of us is going to have a unique disease experience, whatever cancer treatment path we choose. We are all individuals doing our best.

Maybe I’ll say that again, a little louder for the people in the back: We are all individuals doing our best. And none of us, none of us, wants to die.

But for whatever reason both the allopathic and the alternative thinkers love to blame the dead person.

According to the allopathic community, if you follow the conventional protocol and die, your death was not the fault of the medication or the treatment plan. It was “your state of health before you started,” “your genetics,” “the virulence of the disease,” or the fact that you sought treatment “too late.” Sayonara.

According to the same mainstream medical point of view, if you follow an alternative protocol and die, of course it was your fault because you refused conventional treatment!

But the alternative cancer camp also loves to proffer blame. The reason the natural medicine didn’t work was because the patient had not found Jesus! The reason the patient got cancer in the first place is because he didn’t work out his childhood rage against his alcoholic father! He died because he didn’t believe in himself. He died because he tried X, Y, and Z but did not do A, B, and C. If he had done _____ [insert miracle cure du jour], he’d still be with us. I’ve heard it all. And more.

I guess it’s easier to blame the dead person than to understand in a deep and profound way that we all have an expiration date, that things happen, that our loved ones (or our enemies) may have died anyway, no matter which treatment options they chose?

So my husband, seeing me struggling with all of this and watching me worry incessantly about what to do and whether I’ve been making the right decisions, wrote me an informed consent contract to sign with myself.

Here it is.

Truly Informed Consent Contract for Jennifer Margulis