How to Create Agency as a Patient
Empowering All Patients To Make Educated Decisions
Agency is defined as, “the capacity of individuals to act independently and to make their own free choices.” What does this mean for healthcare? How does the healthcare consumer maintain and create agency while also navigating the complexities of medicine?
A few weeks ago, I traveled to Washington DC to teach a group of 40+ physical therapists and occupational therapists about working with people who are dealing with various types of pelvic pain. Over this 3-day course, we covered topics related to diagnosis, medical management, manual therapies, movement interventions, and much more. On the third day of the course, I gave a lecture on "trauma-informed care." What is trauma-informed care? Trauma-informed care means the "adoption of principles and practices that promote a culture of safety, empowerment and healing."
While we do focus on how widespread trauma is, the varying ways people experience trauma, and strategies to develop sensitivity, respect and consideration for the needs of our patients, we also strongly emphasize the importance of treating all patients in this way. One of the key pieces in doing this is helping a person develop a strong sense of agency- the ability to make their own educated decisions and partner alongside their healthcare professionals, instead of being the recipient of directed care.
What Agency Means In Healthcare
The idea of agency can seem fairly basic. Shouldn't every patient feel like they can make their own decisions? Shouldn't they feel like their healthcare providers are all members of the same team? But, that is often not the case. When a person loses this agency, they can end up in situations where things start happening to them, instead of with them, and this can create difficult and sometimes traumatic experiences. This could be a mother who feels pressured to have a birth intervention she was really not comfortable with having. This could be a person being scolded for not being "compliant" with their recommended home exercise program (as opposed to their clinician understanding what happened and partnering with them to fit exercise in their lives). Or, it could be feeling pressured to continue a painful examination that they otherwise would choose to stop.
There are many reasons why losing one's agency is detrimental. Remember, the pelvic floor muscles respond to threat. So when a person is in a situation where they feel threat (whether that is due to stress, a difficult situation, or other circumstance), the pelvic floor will activate. When someone is dealing with something like pelvic pain, sexual pain, and other diagnoses, this can lead to a problem becoming worse. So, how can you maintain your agency as a patient?
Tips to Maintain Agency as a Patient
Ask Questions. All the Questions.
"The only stupid questions are the ones that are not asked."
If you aren't understanding what is being recommended to you, ask more questions for clarification. Your healthcare provider should always be happy to answer any questions you may have to help you make the best decisions for your care. This also applies to times when you are in the middle of a treatment/procedure/etc. Ask away. Try saying:
"Would you mind explaining my options again?"
"Can you clarify what the benefits and risks would be to..."
"Are there any risks in not moving forward with that treatment?"
"What are the reasons you think I need to..."
"I'm sure you have a busy day, but it would really help me if you could answer a few questions."
For more insights on what to look for in a pelvic healthcare provider see here.
Don't be afraid to slow things down.
If your treatment session or medical appointment is going a direction you are uncomfortable with, or if something is happening that you don't feel like you understand, feel free to take a break. Try saying:
"I need some time to think about that."
"I would like to take a few minutes to consider my options."
"I would prefer not to move forward with that today."
"Can you explain _______ to me again?"
"I'm not sure I understand all of my options."
"I'd like to go home and think about all of this. I'll let you know what I think at our next visit."
Bring a friend.
If you know that you tend to get overwhelmed at your appointments and have difficulty expressing your needs or how you feel, consider bringing a friend/partner/spouse who will have your back! Tell them in advance what you want their role to be and how they can help you! This could be stepping in to ask for some time to consider options, asking a provider to slow down and repeat their explanation, or simply being a person to be present with you during a difficult appointment.
I hope these tips have been helpful in helping you develop strategies to create agency as a patient.
Healthcare Professionals: Are you Encouraging Agency?
If you are a healthcare provider, I urge you to reflect on your own practices. Do your words and actions support your patients in maintaining autonomy? support agency? Do you unintentionally pressure patients into participating in treatments or exams that they may not feel comfortable with? Do you shame patients when they don't follow your recommendations? None of us are perfect. I truly believe that most health care providers have the best of intentions. But, we can all do better. Reflect on our own words, habits, body language, and be better partners for our patients!