Shared Decision Making - Beyond Informed Consent

Let’s say you’re in the market for a car. You’ll probably do a bunch of research and consider different makes and models, figuring out the pros and cons of each so you can be an informed consumer and you’ll eventually make the best decision for you. In healthcare, the same thing happens before beginning any medical treatment or procedure and it is a legal right through a process called informed consent. In it, a doctor must share with you the treatment risks, benefits, and alternatives. That’s great but when patients don’t remember what was said or don’t understand what’s written, are they really informed on what they’re consenting to? We believe the answer is no. We also believe that informed consent alone is unfair because it places an unjust expectation and burden on patients. Instead, patients should be able to make this decision in tandem with their provider through a process called shared decision making and it’s something that patient advocates can help with. 

The informed consent process protects both the patient and doctor but in order for it to be valid, there’s a criteria unique to each that both doctor and patient have to follow. The patient must be competent, make the decision on their own and without any external pressure from the doctor. A patient can always withdraw consent and of course, they can also choose to refuse treatment. The doctor’s criteria includes disclosing the diagnosis, reasons for the treatment and its risks and benefits, reasonable alternatives and those risks and benefits as well. They also must disclose known risks and benefits of not undergoing treatment. Informed consent can be given verbally or written. If you don’t recall what your doctor conveyed to you about a treatment or didn’t read all of the paperwork before consenting for a surgery, you wouldn’t be the only one. Studies have shown that 40-80% of what patients are told by their doctor is forgotten immediately and this 2014 study found that 54.8% of patients didn’t read the consent form either before giving permission to move ahead with their surgery.

Shared decision is a key element to patient centric care. It is a collaborative process between doctor and patient to reach an evidence-based decision that aligns with the patients’ preferences or values. The patient is given the chance to decide what is best for themself. Informed consent will still need to be obtained to begin treatment but the patient has a voice in this approach and the decision ends up being more of a dialogue than just a dump of new information during an already stressful time and leaving the patient to come to a decision on their own. But if you don’t know what questions to ask, or if you find yourself intimidated by your doctor  — if this is your situation, know you’re not alone. The power differential between patient and provider is a real problem in healthcare and I highly recommend checking out my previous post about it — shared decision making can still feel one-directional and not a real conversation. This is where a patient advocate can be very helpful in the consenting process.

I personally know how intimidating the consenting process can be and experienced it myself when I was deciding on treatment for testicular cancer. After my first surgery (orchiectomy), it wasn’t certain if my cancer spread to other parts of my body and my doctor offered two treatment options – another surgery called retroperitoneal lymph node dissection (RPLND) or close observation. The surgery is rather invasive and has many potential complications but I’d quickly know if I was done with treatment or needed chemotherapy. In close observation I would follow a strict schedule of scans and blood work for years to come and if the cancer spread, I’d then need the RPLND surgery and chemotherapy. In collaborating with my doctor, we decided to proceed with the surgery because the wait-and-see approach of close observation requires patients being ok not knowing if the cancer has spread and that isn’t me. For some patients that might be fine but I knew myself well enough to know that I wanted a definitive answer and knew that the RPLND surgery was the best treatment option for me.

When asked to make a decision about a treatment or not having it, the old saying “you don't know what you don’t know” has never been truer. Working for you and representing your interests, Tikkun Patient Advocates facilitates an understanding of your disease and the treatment options. To help neutralize the power differential, we can also participate in the conversations with your doctor and ask the questions that you shouldn’t be expected to know that you need answered in the first place. This allows for you to truly be informed and ultimately make the best decision for you about your treatment. If you have any questions about the informed consent process, or any of your healthcare needs, we would love to hear from you.