Here we go again. Not that I thought maternal health disparities for the black community would improve overnight, but here we go again. I have been dreading reading about what happened in Dallas. I mean how many times can you really see stories like that and turn a blind eye? If you read my first post, The Black Birth Experience (click here), then you know that I know all too well about mistreatment in health care settings. This is not just in the women’s health field, but for all health care fields. As you know, this blog focuses on education and self-advocacy, and today’s topic covers how individuals and healthcare providers can advocate for themselves and their patients.
To start, it is important to know that there a difference between advocating for yourself and refusing care due to distrust. Honestly, both are valid. I completely understand when patients are distrustful of the health system especially now. There is also refusing care to have control. You can be well informed and still have control, but in a safe way that benefits you and your health. When someone is truly advocating for your health, you may not like that your thoughts are not immediately agreed with because your health care provider SHOULD be putting your safety first which may not end up being the plan that you have for yourself. As I have said before, keep an open mind.
Building Trust & Relationships
One of my absolute favorite things about being a provider are the relationships that I get to build with my patients. I love sitting and talking about what new pet they have or how their kids are doing in school. For me, that is a part of their health care.
You can only build trust and relationships if you feel safe. I always tell my patients, finding a provider is like dating. You may have to meet a few providers until you settle on one that you feel safe with. But it is worth the search so that you can trust your provider and feel confident that they have your best interests at heart.
Listening (Actively)
I admire providers that can multitask by creating bonds with their patients and documenting at the same time. That is so not me. These days there are so many demands on finishing your documentation as a provider. I don’t think people realize that even though you see your patient, the work does NOT end there. You only get about 10-15 minutes for a 30-minute appointment and after that time you must document every encounter, submit to billing (insurance), answer messages, send refills, etc. You are not finished once the office closes. So, I understand how that demand can make things stressful. It truly takes away from the care that I would like to believe many providers want to give.
On both sides, there needs to be a better job of actively listening to one another. My priority when meeting a patient is to listen first which includes hearing what people say to me as well as looking at my patient and watching their body language. If it is someone’s first time meeting me, the trust is not there, but by paying attention to your patients you can know whether your patient is being honest with you over time. Patients (including myself) will downplay their symptoms at times. Sometimes people feel that they are a bother if they bring up their true concerns. The way I see it, that is our job—to listen to you so that we can help you.
On the patient side, when a provider is giving you recommendations it is to do what is best for you and your health. Our goal should be to keep you healthy and even though we as patients don’t always like the recommendations, really listen to what the provider is saying. For example, I once had a patient during my family practice days tell me that her A1C (3-month blood sugar average) was greater than 13% because of the stress in her life. Stress can raise your blood sugar but not by so much that it leads to type 2 diabetes which is what that A1C means. I would never recommend something to patients that I wouldn’t recommend to my own family. After explaining the risks of a blood sugar that high for the body and heart, my patient was very adamant that if she reduces her stress her blood sugar would decrease and did not want to start medications. She has that right, but we delayed her care because she was not truly hearing me. Eventually she did start medications and brought her A1C way down.
Patience
Taking the previous example— I did not pressure my patient at all. I provided her with all the information and realized that she needed a moment to process the information that was given. We met about two additional times after the initial meeting that informed her of her diagnosis. I gave her space to ask the questions that she needed answered and we became partners in her care.
Know Your Rights
As a patient you have rights and I’m not sure that everyone knows that. Prior to nursing, I never heard about or knew of patient rights.
Respect and Dignity
You have the right to care that respects your core beliefs and your religious or cultural beliefs. For example, in certain religions the patient must have a female provider especially when it comes to well woman exams.
Roadblock: There are times when it cannot be a 100% guarantee, for example when you are at the hospital to deliver a baby and the only provider that is working for your practice is a male. Delivering providers change every 12 to 24 hours and it is hard to predict who will be there when you deliver. In this situation it is best to investigate the clinic you choose as your OB as most clinics with both males and females have a consent at the beginning of your pregnancy that states the same provider, or desired gender cannot be guaranteed.
Informed Consent
There should never be any treatment or procedure that is done without your consent. Additionally, you have the right to an interpreter if you need one to help you to understand what you are signing and allow for questions before you sign. Even though it can feel tedious when you are the patient, it is important to get these consents before starting any treatments. There are times when it just can’t happen beforehand. For example, someone comes into labor and delivery and delivers immediately. In that situation, you are getting the consent after the fact. It is also important to note that consent includes verbal consent. For example, if I need to do a breast exam, I need to inform you of this plan and get your consent and offer you a chaperone.
Privacy and Confidentiality
Say this louder for the people in the back! You have the right to a confidential patient-provider relationship, just like how lawyers have attorney-client protections. No one has the right to your business and your health care plan. This agreement can be broken if there is a child that is going to be of harm to themselves or others, at that point it is a safety issue. Otherwise, thank you HIPAA.
Right to Refuse
Meaning you have the right as a patient to refuse treatment. As providers we do have to tell you all the risks and benefits of treatment. It is not us bullying you; we legally have to inform you of these things so that you can make a decision that is best for you. By not informing you, there is the risk of legal action of course. Meaning you can say “I was never told that” when there is a bad outcome. Just like buying a car, you have the right to know what that used car has been through and the dealership should inform you so that you are safe. On both sides, we don’t have to agree, but you DO have the right to say no, and we DO have the right to inform you.
Right to a Second Opinion
If you are going to buy a home, are you going to take the first loan that is offered or shop around? Hopefully you would shop around. You can do this in health care. Now you can’t keep going back and forth between two providers in the same specialty, insurance doesn’t like that and you will eventually have to pick one. But you have the right to make an appointment and see what another providers’ opinion is about your condition especially if your gut feeling is that something is off.
Do Your Research
But not Dr. Google, please go to a reputable website. If you search long enough you are going to find an answer that is close to all the symptoms you are experiencing, but that doesn’t make the search correct. Remember your provider went to school for this. I could and would never go to an accountant and tell them that I looked online and knew everything about doing my own taxes and their job, that would be insulting. What I would suggest is once you get a medication or a diagnosis, do research on that specific subject that way you can come back with any questions that you have and make an informed decision about your care. Sometimes Google research BEFORE you have a true diagnosis can just be added stress and anxiety that you don’t need.
Trust Your Instincts
I always tell patients, YOU are in your body every day, therefore, YOU know yourself best. If there is something that feels off about your care or you don’t feel heard, find another provider that will listen and treat YOU, not just a diagnosis. What does that mean? Let’s say you need to lose weight, you can’t have someone just say, lose weight and exercise. More questions should be asked of you such as what is your schedule like? Where do you think you can accommodate exercise into your day? Do you have access to healthy foods in your neighborhood? Can you afford healthy foods? Do you have time to cook healthy meals? After knowing more about someone then you can come up with a plan together that may work and benefit your patient.
You can still have this same experience in a hospital setting; this is not only for the outpatient office setting. When thinking of the video from Dallas, the nurse was not actually looking at the patient. I’m honestly not convinced she was listening. However, just by looking you can see that the patient couldn’t even sit down. Her nurse was asking her questions during her contractions when she was clearly in pain. As a former labor and delivery nurse, it makes me wonder if the nurse she had was working in labor and delivery because I don’t understand how a labor nurse can be so aloof. Yes, you need to know the OB/Gyn so they can be there for the delivery, but does it need to be asked during a contraction? No. You can always call the OB hospitalist (if there is one at the facility) to be there for the delivery until the delivering provider can get there. You can also ask when someone is not in active pain (in between her contractions).
There is definitely more work we need to do on both sides. As providers, we have to remember what it is like when we are the patients and patients, please inform yourselves of the above to be a partner in your care.
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