Two doctors at the Cleveland Clinic, Dr. Mikkael Sekeres and Dr. Timothy Gilligan, have written an article in the New York Times explicitly asking patients to partner in the improvement of the informed consent process. As they put it:
We’ve seen too many patients regret decisions that they made without fully understanding their options, or the possible outcome. We encourage our patients, and our colleagues, to be partners in what are often life-changing decisions about health care.
The article also includes an honest appraisal of how the process can go wrong, and the possible impact.
They offer these specific requests to patients.
■ Ask us to use common words and terms. If your doctor says that you’ll end up with a “simple iliac ileal conduit” or a “urostomy,” feel free to say “I don’t understand those words. Can you explain what that means?”
■ Summarize back what you heard. “So I should split my birth control pills in half and take half myself and give the other half to my boyfriend?” That way, if you’ve misunderstood what we did a poor job of explaining, there will be a chance to straighten it out: “No, that’s not right. You should take the whole pill yourself.”
■ Request written materials, or even pictures or videos. We all learn in different ways and at different paces, and “hard copies” of information that you can take time to absorb at home may be more helpful than the few minutes in our offices.
■ Ask for best-case, worst-case, and most likely scenarios, along with the chance of each one occurring.
■ Ask if you can talk to someone who has undergone the surgery, or received the chemotherapy. That person will have a different kind of understanding of what the experience was like than we do.
■ Explore alternative treatment options, along with the advantages and disadvantages of each. “If I saw 10 different experts in my condition, how many would recommend the same treatment you are recommending?”
■ Take notes, and bring someone else to your appointments to be your advocate, ask the questions you may be reluctant to, and be your “accessory brain,” to help process the information we are trying to convey.
These are all excellent best practices.
Now, it would be easy to throw back at the doctors – “Well, you and your institution should be putting most of these in place anyway. Why put it back on us?”
But I think that actually misses the point. Implicit in the article and in the request is the understanding that medical systems are not monolithic, and that change comes much faster under pressure. So I understand this as a request to demand partnership in consent, and to implement the practices that can help ensure it. I also understand this as a request that patients, and particularly groups such as Patient and Family Care Councils affirmatively campaign for the full institutionalization of these approaches.
Ideally progress through such an approach will help lay the groundwork for other patient-partnering innovations. Indeed, informed consent is such a great area in which to start because the law is clear, and the only question is about the effectiveness of the process.
P.S. This also underlines the value of research, and of understanding the process of creating a culture of partnering. It might be interesting to give these suggestions as a handout prior to the consultation, and to measure hospital staff attitudes to informed consent and indeed to patient partnering, before starting doing so, and again after a few months.