UPDATED 6/30/2019 Healthcare in the U.S. can seem chaotic, even if you’re an insider. But I’m not here to talk about what’s wrong (or right) with the system. My focus is on you, and how you can take action to make your way through what can be a complicated and stressful journey, even if you’re healthy and just trying to stay that way. Sometimes, you just have to be a healthcare rebel!
Be A Healthcare Rebel
Whether you’re looking for private insurance or navigating the healthcare system to treat medical conditions, it’s a dizzying array of terms and processes. It’s frustrating when you’re caught up in it, wondering which direction to turn.
There’s no roadmap for dealing with a health crisis, health insurance, or medical billing. No matter where you’re at on the journey, the same theme holds true. Be a “healthcare rebel.”
It takes bravery, especially if you’re battling cancer, a chronic disease, or an illness. The last thing you have the energy to do is fight for what’s best for you physically and financially. However, it’s the most important thing you can do.
In a study, patients with chronic pain felt early optimism, then disillusionment, and finally acceptance of their situation. It was a small study, but it underscores the need to be a healthcare rebel, so you don’t get stuck in this cycle.
If you’re too ill to navigate the health care system on your own, ask a friend or family member to help you. Or ask for a patient navigator. Health systems that emphasize patient-centered care, especially cancer centers or a facility that deals with other complicated medical diagnoses, have navigators ready to help you.
While we often think about being a rebel or going against the grain when we don’t agree with something, make this part of your mission from the start of your healthcare journey even if you’re not ill now. Making this a commitment when you’re healthy will pay dividends when you’re sick.
For those ready and courageous enough to become a “healthcare rebel,” we would like to say “If you do not hold hope passionately and are not willing to commit and take action, don’t bother to sign up. The stakes are too high and time too precious to waste.”
So you may ask, “Where should I start? What can I do?”
- Be present during your visit.
- Ask lots of questions.
- Pay attention to non-verbal cues.
- Trust your gut.
- Do not assume silence means everything is golden.
- Understand the risks and benefits.
- Follow-up on procedures and labs.
- Communicate your thoughts regarding your care and continue to ask questions until you get the answers you need and can understand.
- Read everything you sign and don’t ignore the fine print.
- Find a doctor who is a partner in your healthcare.
- Take responsibility for your health.
- Be proactive and prepare for doctor visits.
Build a patient doctor partnership
So often patients feel like a number lost in the system of thousands of others. Believe in yourself, and search for that partnership. You’re not a number. You’re a human, too, and it’s essential to find an expert who personally cares about your case.
Find a doctor or other healthcare professional appropriate for your health care needs with whom you can partner, who listens, and is a good style match for your personality and approach to health and illness. The doctor-patient relationship and patient-doctor partnership are important.
That’s easier said than done if you strike out the first time and you’re worried about additional co-pays or fees associated with seeing another doctor. Remember, your health is priceless. Invest in your well-being and find the person who is intent on finding you the solution.
“I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”Edward Everett Hale
You can do this. You can be a healthcare rebel!
Take responsibility for your health
Next, take responsibility for your health. You are the expert on your body and emotions relative to symptoms, concerns, and ideas regarding the potential causes of your health issues. You live with your body 24-7, 365 days a year and know how it works best.
You don’t need a medical degree to know in your heart that something is wrong. So, if you can’t find the source of your problem, don’t give up. Keep searching for answers and the right medical team to uncover the mystery.
Your beliefs about (1) the role of your doctor or other healthcare practitioners, (2) medical treatment, (3) complementary medicine, (4) the health care system can have a tremendous impact on the care you receive, the options you are given, and the outcomes you experience.
At the end of the day, you’re responsible for the decisions made by your healthcare team. Whether it’s tests or procedures that are done, a doctor’s diagnosis, or his treatment plan – you’ll live with the decisions and the implications of those.
For example, speak up if a doctor orders a prescription that you don’t believe you need. There are real side effects to the overuse of antibiotics and pain killers. If you don’t think the benefits outweigh the risks, think twice before swallowing that pill.
Ultimately, you’re the one living every day with the financial and physical ramifications of decisions. Medical mistakes are rare, but they happen. Trust your intuition and speak up for what you believe.
Before you sign a form or agree to any non-emergency tests or procedures, make sure you understand the purpose, possible complications, and the potential consequences of not taking any action.
When you’re signing medical forms, you’re probably thinking about the cost. Typically, you’re agreeing that you understand the risks and you’re willing to pay the price financially and physically.
Stop and think about what you’re signing before you do it. Don’t just sign on the dotted life. Speak up if you don’t agree with a test, procedure, or diagnosis.
Be a healthcare advocate
It takes courage to say something when you disagree with a medical doctor with years of experience. Often, they’re standing over you while you sit in a chair, bed, or on a table making the experience even more intimidating.
Not to mention, you’re usually going on the knowledge of living with your own body for years and that which you obtained through research on Dr. Google. You may think it’s no match compared with the years in medical school and the clinical setting that your doctor has, but you’ll find most are welcoming of another point of view.
Push for answers, second-opinions, and consults with experts on your case. Doctors are in the profession to help people, so you’ll find most are more than willing to listen to your thoughts even if they’re not backed by years in medical school.
The best thing about healthcare in the United States is that you have lots of choices. You can choose modern medicine or alternative medicine. You can choose to get care in the U.S. or out of the country. You can do your own medical research.
Patients are their own best advocates. There are also patient advocates in hospitals and other healthcare settings. Seek them out when you get lost in the system or don’t feel you’re getting the best care. They can help you cut through the red tape, but at the end of the day, your voice holds the most weight.
Here’s a quote from Thomas Edison to motivate you.
“If we all did the things we are capable of, we would literally astound ourselves.”Thomas Edison
Ask yourself if you’re as assertive and engaged in your health and the care you receive as you would be in other areas of your life (e.g., researching a car purchase, complaining about a miserable travel experience on Twitter, checking reviews of products on Amazon before you buy, etc.). If the answer is no, take action and be a healthcare rebel.
You’re capable of so much. Use that power to change the outcome of your medical care.
How to prepare for a doctor’s visit
Second, be proactive and prepare for doctor’s appointments. It will improve your healthcare customer journey.
Dr. Google is a real thing, and many patients seek his advice. While it’s a powerful tool in diagnosing patients, it’s also a burden. Be careful not to use it for self-diagnosis, but rather information upon which to get a medical opinion.
Seek out research from medical journals and respected sites rather than generic articles from non-medical sources. Search for case studies documented in medical journals and other expert information. Share that with your doctors as evidence upon which to investigate further.
While navigating all the research and choices can be overwhelming, think of it as an advantage. Knowledge is power, especially when you’re dealing with life and death situations.
Before a visit, keep a running list of concerns and bring it with you. It’s easy to forget when the doctor finally visits your room after weeks of waiting for the appointment, and perhaps an hour in the waiting room.
Write it down and keep the list handy throughout your doctor’s appointment. Include symptoms, questions, and concerns on the list.
If more than one physician or other healthcare professional is involved in your care, make sure you understand what role each doctor plays. Make sure they are communicating with each other.
If you need an interpreter, ask for one. The healthcare arena is complicated enough. Don’t take on the risk of “lost in translation,” if you can avoid it.
Consider bringing along a friend or family member for support, to ask questions, and to help listen. Patients are commonly nervous and anxious, particularly if they fear hearing “bad news,” and it is easy to misunderstand or not even take in much of what you’re told.
Let courage overcome any fears.
Doctor’s Visit Checklist
During a doctor’s visit, be a healthcare rebel by asking questions over and over again. And listen! Questions and listening can’t be overstated, especially when you’re dealing with a serious medical condition.
This is a checklist to get the most out of your doctor’s visit.
1. Be present during a doctor’s visit.
Listen and be present. Don’t think about how a diagnosis will change your future. Focus on what’s being said so you can make the best decisions.
Pay attention to non-verbal clues – does the doctor’s (or other practitioner’s) body language match the words being used? Trust your gut or that little voice when it says something does not seem quite right.
2. Ask questions.
Don’t be afraid to say you do not understand. Ignorance not only is not bliss in this situation but could be deadly.
Ask for information to be explained in a way you can understand.
Repeat the information in your own words to make sure you have interpreted things correctly.
If someone is talking too fast, ask that the pace of speech be slowed down.
3. Take notes.
Write down what you hear and ask for written instructions for taking medication and preparing for tests and procedures.
Doctors order medical tests all the time, but for you, it may be your first time experiencing that test. So, you don’t always learn the test procedures ahead of time. Ask questions about the process before, during, and after the test.
Asking questions will reduce your anxiety about the test, so you’re not surprised when the nurse or tech does something.
4. Make it personal.
Ask what they would do or suggest for a family member.
This is an important question which often causes a moment of silence as doctors reflect on it. Asking your doctor what he or she would do if faced with the same situation personally or with a family member, forces them to make the case personal. You’re no longer patient number 20 with that diagnosis and treatment plan that day. You’re now the doctors’ mother, father, sibling, child, or spouse. This question makes it personal immediately and usually yields the best answer for you.
5. Get support.
If it seems it would be helpful, ask if there is another patient or support group where you can hear from others who have the same problem.
6. Trust yourself.
Pay attention to non-verbal clues – does body language match the words being used? Trust your gut or that little voice saying something does not seem quite right or hang together.
How to be a healthcare rebel after a doctor’s visit
When the doctor leaves the room, your journey as a healthcare rebel continues. You may be embarking on new tests for diagnosis or a complicated treatment plan.
There may be a degree of uncertainty or anxiety, depending on what the doctor told you about your situation.
You may have a question that you forgot to ask the doctor or suddenly comes to mind. Ask the nurse or track down the doctor again.
Make sure you understand your options, their risks and benefits, and the risk-benefit ratio of doing nothing.
Follow up on labs, radiology, pathology, and other test or procedure results. Do not assume silence is golden. Call your doctor if you don’t hear from them in a timely manner.
Maya Angelou once famously said about certain experiences in her life, “Well, if I’d known better, I’d have done better.” So…….now that you know better, what are going to do about taking action for the benefit of your health and well-being?
How will you be a healthcare rebel?
[The foregoing information, resources, links and/or references (collectively, the “Materials”) are provided solely for informational purposes and are not intended as medical or other professional advice. No representation or warranty of any kind is made in connection with the content of the Materials. The Materials may not be current and no one should take any action based on the Materials without first consulting their health care professional.]