Shared Decision-Making With Your Health Team
Author: Lauren Wheeler, MD, BCPA
Purpose of this guidance: This particular chapter highlights the importance of patient involvement in the health care decision-making process. We provide various tools and present methods to have the right conversations with your health care provider to ensure the treatment received matches your goals.
History: How Have People Made Health Decisions?
Once upon a time, when people got sick, the doctor came to their house and told them what to do to feel better. There were no discussions about what the patient wanted or what was important to them. To be fair, the patient and doctor likely didn’t need to discuss too much since they were members of a small community and knew each other well. The doctor just told the patient what their mentor did in the same situation or what they had found to work for others. The patient did as they were told.
As science has improved, we no longer have to rely on only what has been done before. We can try new things and find out how effective they are for lots of people in lots of situations. That’s what medical research aims to do, and our society has countless examples of successes. With the internet, patients have access to much of the same information about the results of medical research that their doctors do.
Because we have more to go on now than only opinions, even expert opinions, there are more gray areas in our healthcare. Some options may help a person with swallowing problems avoid getting pneumonia, for example, but at the cost of being able to enjoy their favorite foods. That’s a trade-off that some people would make, but not others.
Instead of trusting our doctors (especially ones we’ve only just met) to magically know what’s best for us, medicine has mostly tried to embrace a shared-decision-making model.*
What Is Shared Decision Making (SDM)?
Because medicine has expanded so much, there are multiple options for diagnosis and treatment of nearly every condition. Oftentimes, there is no single right answer about what to do, like in the swallowing example above. The situation is not black-and-white, all right or all wrong.
When a patient enters one of these gray areas, their doctor should guide them in shared decision making. This means that the doctor and patient decide together about what should happen next. Basically, the process looks something like this:
Doctor tells the patient that there are multiple options and a decision needs to be made.
Doctor tells the patient about what the possible options are and what the most likely consequences are for each option.
The doctor may ask the patient to summarize their options to make sure they understand everything. The patient may ask the doctor to clarify information.
Doctor and patient talk about how they feel about the possible options, what outcomes are important, and what they prefer.
Patient chooses what they want (or asks for more time to consider and talk it over with friends and family).
Doctor supports the patient’s choice by making sure their wishes are honored.
If you are trying to make a decision yourself, you might want to use something called a decision aid. These are tools that help explain your options to help you decide which is best for you.
What if My Doctor Isn’t Offering Me Shared Decision Making (SDM)?
Sometimes, doctors get busy in their day and don’t take the time to fully engage their patients in decision-making. The process of shared decision making takes more time than simply telling someone what to do. Of course, that isn’t an excuse, but it does help explain why this happens.
As a patient, you can always ask questions like:
- What are my choices?
- What happens if I do nothing?
- Why do you want me to sign this paper?
- What are the risks and benefits of this test/treatment? (This is good wording because doctors are trained to educate people about risks and benefits – using those words will remind them to do it.)
- Is this an opportunity for shared decision making? (Again, by using the word (SDM) that they know, it may remind them to take the time to engage in the process with you.)
- Can I make another appointment to talk about this more?
You can also remind your doctor of your values and ask how the proposed treatment/test matches up. For example, you might say “Doc, I don’t want to go to a nursing home; how likely is that to happen from this surgery?”
What Do I Do If My Doctor Doesn’t Listen to Me? What If My Doctor Abandons Me and Won’t Help Me Decide?
If you find yourself in a conversation with your doctor and you don’t feel that your voice is being heard, take a deep breath. Try to manage your emotions (perhaps anger or sadness) and realize this is an opportunity to practice being calmly assertive.
Figure out what is going on. Are they rushed? Do they understand what I want?
If you can figure out the problem, try to address it. You might say something like, “I know my appointment is supposed to take 20 minutes, I’d like to use that time to discuss this decision because it’s important to me.”
Remind them that it’s your body, and you have to decide what happens to it, as well as live with the consequences. (This is called body autonomy and is almost as important to doctors as “do no harm.”)
Tell them that you value their expert opinion and medical knowledge. You can’t make an informed choice without knowing their opinion (“informed choice” is another keyword that doctors learn in training).
Don’t ask them to make the decision for you. No one, not even a doctor, can know your life and your wishes better than you can. You can ask them something like “if I want to avoid tests that I don’t need, is this one I could skip?” A question like that helps them understand your values.
If nothing works and you can’t come to a good resolution with your doctor, consider finding a new doctor or a patient advocate to help you learn to communicate effectively in healthcare. Some doctors don’t have the communication or emotional support skills needed to help you in the SDM process.
*Medicine has also evolved to include advanced practice providers, like physician assistants and nurse practitioners, and professionals like dentists and podiatrists, who help people make health decisions, too, but this author has chosen the term “doctor” in this piece for simplicity.
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License (CC-BY-SA-4.0), available at https://creativecommons.org/licenses/by-sa/4.0/. SPDX-License-Identifier: CC-BY-SA-4.0
Signed-off-by: Lauren Wheeler