Consent

As I’ve been working on various elements of the plan to address the progression of cancer in my body recently (for more on this, you can read my post from last week: Here We go Again), this concept of consent comes up over and over and over in both practical and other ways. It’s an issue that comes with a fair amount of baggage for me, especially since there are so many legal elements to this issue. Bottom line for me? The way consent works in the context of medical treatment is complicated.

Let’s first look at the definition as promulgated by the American Medical Association:

The process of informed consent occurs when communication between a patient and physician results in the patient’s authorization or agreement to undergo a specific medical intervention. In seeking a patient’s informed consent (or the consent of the patient’s surrogate if the patient lacks decision-making capacity or declines to participate in making decisions), physicians should:

1. Assess the patient’s ability to understand relevant medical information and the implications of treatment alternatives and to make an independent, voluntary decision.
2. Present relevant information accurately and sensitively, in keeping with the patient’s preferences for receiving medical information. The physician should include information about:
   1. the diagnosis (when known);
   2. the nature and purpose of recommended interventions;
   3. the burdens, risks, and expected benefits of all options, including forgoing treatment.
3. Document the informed consent conversation and the patient’s (or surrogate’s) decision in the medical record in some manner. When the patient/surrogate has provided specific written consent, the consent form should be included in the record.

https://code-medical-ethics.ama-assn.org/ethics-opinions/informed-consent, my emphasis added to highlight the definition.

Anyone who has undergone medical treatment or procedures is familiar with the way this usually goes …

1. First, a provider and the patient talk and hopefully come to an agreement on what will occur with some allusion (usually minor) to the practical considerations of timing and other details.
2. Second, another staff person is tasked with the “patient education” part of the appointment where information is provided about medication, side effects, procedures, etc., in rather excruciating detail. Those long lists of potential side effects can be pages and pages and pages. This education piece has happened early and late in the process for me.
3. Third, that staff member doing the education or maybe even someone else brings in a consent document, sometimes on paper and sometimes electronic, which should reflect what was agreed upon.

An informed consent document is ostensibly created to ensure that what has been discussed and agreed upon is memorialized in writing. This is a legal document hopefully designed to protect everyone involved and to reflect a meeting of the minds between the Health Care Workers (HCWs) and the patient. The practical issue of ensuring that patients really understand what is happening is often viewed as being confirmed by signing the consent.

But does it?

Who actually spends the time to read and be sure that the document does do this?

Apparently, very few people because I read all of mine and then the staff person/people tasked with getting my signature often gets very annoyed, usually visibly so. At various points, someone has even leaned over my shoulder to “explain” the legal language with varying levels of actual understanding. As you probably guessed, that didn’t go so well for that staff person, especially since they didn’t know what they were talking about.

Let me share with you all what happened recently as I was getting ready to complete a new part of my treatment plan, which has blown my mind yet again.

So, I show up for the appointment, they explain what is going on and then said they needed to get my signature on the consent. I say, sure, no problem. Then, I’m handed an iPad, where the consent is pulled up, and the screen is scrolled all the way down to the bottom where my signature goes. I’m asked to sign. I look around the screen and see that the consent document is 3 pages and that the screen is showing me the third of those three (3) pages.

At this point, there are three techs/nurses waiting on me and they are all standing over me. I won’t go into a lot of detail, but even the physical positioning of people in the room creates a sense of urgency, communicating that I’m holding them up on this important part of the appointment. And it gets worse when the people who are looming over me are significant taller than me, which is nearly all of the time. This is the part where I usually make a joke about people hating lawyers as I scroll up to read the entire document. As usual, this falls a little flat as I’m told, yet again, that I don’t need to read the document, just sign.

PEOPLE — READ ALL THE DOCUMENTS!!!!!!!!!

As I read through the consent and verify the important things, like it has my name on it, my date of birth, correctly identifies the body part at issue and what is happening, I stumble upon a few lines that I just can’t agree with. Everyone has their “things” that are important to them and there’s some clauses that occur in many consents that I’m just never going to be ok with and will never sign. It happens over and over to me, dating back to when I had kids that I ask for blanket or general language to be more specific and never about the medical things, it’s always about the things that the hospital or clinic adds. Yes, there was sighing and a little eye rolling, but a manager was retrieved, the consent adjusted and I got a copy for my file.

I get that there are lots of things to do, lots of documents to sign, lots of appointments, and getting IV chemo or radiation or surgery or so many other things done quickly takes a lot time and work, but to assume that a patient will just provide a signature without really understanding what is being signed is still incomprehensible to me. Written informed consent is supposed to be a reflection of what has been discussed, to reflect the actual agreement reached, not a rushed pro forma where a patient is told not to bother to read the agreement. What I find, over and over and over, is that the parts of the consent that are discussed take up about 10% of the document and the rest are things that are never discussed and often have little to do with actual care.

While I often get pushback and no one is super happy to cooperate with me, I’ve been successful each time I’ve asked for changes that had nothing to do with my treatment. For example, that consent I was presented with when having a baby literally had a clause that allowed the hospital to take pictures of me and my baby, during and after labor, to utilize for marketing purposes. Nope and hell nope. The most recent consent allowed the facility to use pictures taken in preparation for and during my treatment for any purpose they wanted with no notice to me forever. Nope and hell nope again.

Consent is important and the only way institutions will stop slipping in clauses that have nothing to do with patient care and everything to do with allowing them carte blanche, is for patients to speak up. Everyone should know what they are signing and if an explanation isn’t sufficient, ask again. We deserve to be fully informed. We NEED to be fully informed.