The Right to Choose

Do you know someone who believes that hospitals are like the proverbial Hotel California – you can check in but you can never check out? There’s a milder version of this fear: you seek medical care but that means you run the risk of losing control, even at a doctor’s office. Maybe the person with these fears is you.

I have some hypotheses about why these fears are so pervasive. One of them is the history of American medicine. Until about 50 years ago, doctors were considered pretty close to all-powerful and all-knowing. If they said to do it, you most likely did it. It turns out physicians wanted it that way, and started working to make it so back in the 19th century. The 1847 Code of Ethics of the American Medical Association explains our role as patients: “A patient should never weary his physician with a tedious detail of events or matters not appertaining to his disease. Even as relates to his actual symptoms, he will convey much more real information by giving clear answers to interrogatories, than by the most minute account of his own framing.” There is no question who is the decision-maker: “The obedience of a patient to the prescriptions of his physician should be prompt and implicit. He should never permit his own crude opinions as to their fitness, to influence his attention on them. A failure in one particular may render an otherwise judicious treatment dangerous, and even fatal.”

I’m influenced by my own experience, as I was medically experimented on against my will for half of my childhood. I was unlucky because kids weren’t consulted back then and because my doctor gathered way more research data – from my blood, urine, bones, lungs, and cervix – than he needed to “treat” me for the minor medical condition he claimed I had. It wasn’t until many years later that I learned that patients are supposed to give informed consent to the treatment they receive. I became a fierce proponent of our right to know what we’re choosing and our right to choose nothing at all.

Informed consent is a concept most of us are familiar with – we understand that it’s about our right to autonomy (our body, our choice) and to personal dignity (the medical profession needs to respect and protect us). The tradition is rooted in various ethical codes and in case law that arose because patients who felt harmed turned to the courts for remedies. Practically speaking, informed consent for medical care is about communication of information about risk/benefit of any procedure or treatment so we can make carefully considered decisions. It’s about being informed about treatment alternatives if there’s more than one choice, and it’s about the right to opt out altogether. (Your designated health care proxy is legally able to speak for you if you can’t. If you don’t already have one, consider getting a Durable Power of Attorney for Health Care in place.)

Doctors are aware that there can be a gap between the promise of informed consent and the practice. In a New York Times article, Drs. Mikkael A. Sekeres and Timothy D. Gilligan recount a mock informed consent conversation as a way of pointing out how easy it is to turn informed consent gathering into an epic fail:

Us: Blah blah blah.

You, as the patient, nod, and look like you’re paying close attention.

Us: Did you understand everything we said?

You: Yes.

Us: Any questions?

You: No.

These doctors advise patients to ask a lot of questions. Doctors can use “mirroring” techniques to check to see if the patients truly understood what they are trying to communicate. The burden, alas, falls a lot on the patient to advocate for him or herself. Here’s more of their advice:

· Ask medical personnel to use words that you can understand.

· Repeat back what you think you understand, to see if you’re correct.

· Ask for copies of things.

· Ask about best-case, worst-case, and most likely-case scenarios, with statistics to go with them.

· Ask to talk to someone who has had the same procedure or treatment.

· Ask for information on alternatives to the treatment being offered.

· Take notes, and bring an advocate as a second pair of ears and eyes.

https://www.nytimes.com/2017/03/01/well/live/informed-patient-dont-bet-on-it.html?searchResultPosition=1

So, what does informed consent look like today? I got a chance to find out last year when I had surgery that required two surgeons with different specialties. I got to go through the informed consent process twice, and because I was working on my book about medical experimentation, I was paying close attention. What I learned is that there’s no set standard.

At the end of the first pre-op consultation appointment, my surgeon’s nurse presented me with a form to sign that said I understood I might experience: infection, scarring, nerve damage, loss of blood, thrombosis (clotting), allergic reactions, and perforation of the organ operated on or nearby organs. The form also stated that I could experience loss of vision, loss of an eye, and “the remote possibility” of brain damage or death.

When I asked about the loss of eye issue, which scared me, the nurse said, “Oh, she’ll cover your eye with a protective shield during the surgery.” She added, “Imagine if you were asked to sign a release every time you left your house,” as if the risks of going out into the world on a daily basis were somehow equivalent. I suspect the nurse used that line often, to point out that being alive is a risk. My consent process was turfed out to someone well-meaning but not able to perform the task properly. A nurse is not in an ideal position to answer questions about a surgeon’s history with a particular surgery, rate and type of complications, or detailed medical questions about the surgery or recovery. The message I took away was that informed consent was a legal technicality and I should shut up and sign. As soon as the nurse got my signature, she was in fact gone. She did not offer me a copy of the form—I plucked one from sets of generic paperwork hanging on the wall.

This particular surgery had a second part and a second surgeon. The second surgeon explained the surgery thoroughly during a pre-op appointment, and answered my questions about how many of the particular surgery he had done and his complications rate. He talked me through a more modest and specific list of actual potential complications (rather than asking me to sign a scary and generic laundry list). I went away feeling satisfied.

The purpose of this essay is to encourage you to face your fear, advocate for yourself, and make informed consent happen the way it is meant to. It’s here to protect each of us and remind us that, in theory at least, we get to choose whether to give consent. I know that doctors care about this deeply, too, and it’s a great opportunity to strengthen the bond of trust between us and them.

(Sammie Vasquez / Unsplash)

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