When it comes to investing our money, like when we decide to buy stock or invest in a mutual fund, we look at how well that investment is doing, how well it has done in the past, and how much of our hard earned money we wank to risk in that investment. We hope, of course, that investing will yield more income than just hiding our money under the mattress, or leaving it in the bank. We might consult with an investment adviser, sharing our decision-making with him or her. Ultimately, we decide if it's a good choice for us. If it seems too risky, then we won't invest.
The future of our money and income becomes a contemplated and considered decision, based on evidence combined with our own values.
Yet, when it comes to our own health, and making difficult decisions about treatment, we patients tend to trust someone else, usually our doctors, to make those decisions for us. Few of us ask questions about the treatment's track record, or how much risk is involved. Few of us try to weigh our own values and goals against what is being recommended. "Whatever you say, doc!" is our response to a recommended way forward, whether or not we truly understand it; whether or not we are truly informed. And it never occurs to us that our personal beliefs, based on our goals and values, should be a part of the formal decision-making process.
When framed this way, we patients have to ask - why don't we share in our own health decision-making?
The answers are simple, but profound. We don't, because:
- We are taught, as children, to believe everything the doctor recommends is in our best interest (Here's why it may not be.)
- We are never taught to be smart or inquisitive patients, so we don't really know how to share in that decision-making, or at least we don't have confidence in our abilities to do so. In the same vein, few doctors consider us as equals, and therefore don't credit us with the ability to make truly informed decisions.
- The system is not set up to value our participation; in fact, if anything, it is set up in just the opposite way - to be sure we won't. Being participative in the decision-making process takes time, and to most doctors, time is money they don't make from another patient.
- In too many cases, the concept of "informed consent" has become a joke. Patients are sometimes handed the paperwork that requires their signature to confirm they have been informed even before they've met with their doctors! Often they are in shock, or cannot process options put before them. In short, they are not informed, yet they give consent anyway.
"Shared Decision Making" sounds like a simple description of, well, sharing decisions about medical care. But Shared Decision Making (SDM) is actually a more formal process, one that helps patients weigh their values, goals and priorities against unbiased evidence about their diagnoses and treatment options. It empowers them to make the right decisions for themselves about their health and medical future, and it gives them peace of mind that they have made the right choices.
SDM is a process that recognizes that not everyone makes the same kinds of choices, even if their diagnoses are identical. A 28-year-old motorcycle racer is not going to make choices and decisions with the same value system as a 65-year-old grandmother who has just retired and loves to garden, even though they might both be diagnosed with type-2 diabetes. An 85-year-old breast cancer patient will not make the same choices as a 35-year-old breast cancer patient, even if they are diagnosed with the same stage and form of breast cancer.
Let's see how SDM would affect John's choices:
John, age 72, was diagnosed with heart disease while in his 50s. John has five grandchildren whom he adores. He plays an active role in their lives, taking them fishing, and building model ships with the older grandson. He and his wife love to travel all over the country in their RV. He's very active, but is careful with his heart health because he wants to stay that active.
Recent testing has resulted in a diagnosis of prostate cancer, and John is very worried. His doctor has recommended a prostatectomy, surgery to have his prostate removed, and since John just wants the cancer gone, he agreed to have surgery. John asked very few questions because he's scared, and since the doctor has recommended the surgery, John believes that must be the best choice for him.
What John doesn't realize is that prostatectomy may not be the best choice for him at all. No one asked John what he values, or what his goals are. No one realizes that John is happy to be alive as long as he can remain active, but if he is rendered less active, it may not be a choice he wants to make. Further, no one has assessed John's heart's ability to hold it's own through prostate surgery.
John is just scared, and no one is sharing any decision-making with him.
How Would Shared Decision Making Change John's Experience?
To begin with, John should not make any decisions at all until he gets a second opinion. While a blood test might yield all the information he needs about the diagnosis, it could be instead that two blood tests, compared after some time has passed, might give him even more information. A second opinion is his first step after such a diagnosis.
Assuming the second doctor confirms the prostate cancer diagnosis, John would enter in to the SDM process with either his own doctor (if his doctor understands the steps in SDM - unfortunately very few do), a professional advocate who utilizes SDM in his or her practice, or by himself or with a loved one or caregiver.
Now, let's say John decided to try SDM. During the process, John learned more about himself and what he values. He was presented with more options than just surgery, including watchful waiting, proton therapy, radiation, implanted seeds, and others - those that were appropriate for his form and stage of prostate cancer. Using research evidence, and watching interviews with people who had actually undertaken different treatments, John narrowed down his choices once he understood the possible outcomes from each option, and how they might affect his activities and his future.
At the end of the process, John chose watchful waiting, understanding that he would return for a new PSA test (prostate specific antigen - the blood test that measures prostate cancer cells) every three months, and might eventually come to another point where he would have to make a further treatment decision. But best of all, John felt confident he had made a great choice, because he was informed, and was able to manage his own expectations based on what he had learned.
If you receive a difficult diagnosis, and want to explore your possibilities weighed against your own values and beliefs, you will want to give the Shared Decision Making process a try.