This is the first in a series about Patient Advocacy, taking control of your own healthcare and being an informed patient. I am not a nurse, or a doctor, I have just been in the medical system since I broke both of my legs at 2 years old. I have been in an out of so many hospitals for various reasons. 16 corrective leg surgeries from when my legs were broke at age two, 2 back surgeries and the list continues. Never take my advice for medical care. My advice is given to you to help you maneuver the healthcare system in today’s day and times.
I make no bones about the fact that I am disabled. I started getting sick a LOT in 1984 and it continued off and on with several different things, a possibly fatal skin disease, severe blood poisoning, major anxiety and panic attacks, adult onset asthma, prediabetes, gestational diabetes, tachycardia. I had two major bone grafts during that time from 84 to 91 and then started having major back issues. I went in and out of care for therapy, injections, testing and more testing that all came to a head in 2001 with me ending up having major open back surgery in Jan of 2001.
At that time, I was pretty much under the assumption that the Dr was always right, and no matter what testing they ordered. I said okay to.
Then I had the surgery. I laid 12 days flat on my back because of spinal cord fluid leaking. I had the most incredible headache I had ever had in my entire life (after a history of migraines)
Add to that a horrendous back pain from lying flat on my back for those 12 days so that no more fluid would leak. While I had no more back pain from the injured back, I had surgical pain and the pain from just lying flat.
Day 12 they helped me out of bed. I promise you that day was the day that my entire life changed as far as my healthcare… I will never forget it. My dad and sister and children were visiting and they chose “that” time to “make” me get out of bed.
I went through the most incredible pain I have ever felt that day. As I was getting up, the spinal fluid shifted, and that was all it took. I felt like my head was going to explode and my back was going to crumble.
I totally loved my doctor, don’t get me wrong. HE was amazing. However, I realize I had been there that long and wasn’t getting any better laying there. Why it had to be that moment, I will never understand.
It literally terrified my dad and my sons. The scream I screamed, was horrific. Can you imagine screaming bloody murder because of the intense pain and your dad and children, out in the hallway?
My dad hated hospitals to begin with, getting him there was an act of congress. I can literally count on one hand the few times he ever came to see me after that in the hospital and there have been LOTS of them.
I got up, I walked what they wanted, I left that hospital the next day and I never again, have taken a direct order from a nurse/doctor/therapist, etc. without question.
Why are we doing this? Is this something that has to be done now? What are the side effects? Why this test? Why this medication.
I am a very engaged, and very in control of my healthcare, kind of patient.
I don’t have to do every single test, that they ask of me, I do not have to take every medication that they want to prescribe and then, I will choose which Dr. I want to see if a Dr is going to refer me out to someone else.
So being that kind of patient, takes some work on my part, first. I do not walk into a Drs Office without a list of medications, my diagnostic history with dates, a surgical history with dates and a list of my entire current care team. (I have a downloadable sample at the bottom of this post)
You MUST be an informed patient also. I also have a copy of my DNR, my Living Will and a copy of my formulary at the ready. I use my smart phone for these things (and not “look them up” I mean in a file, ready to go)
If you want to be in control of your healthcare, you must do the legwork.
Every visit I go to, I have all paperwork, I ask for copies of everything and if it’s an apt with a new doctor or we are discussing something extremely serious, I will even video or voice record our conversation. With the Dr’s knowledge.
The Drs office is the worst place in the world to come up with the questions you want to ask. I suggest, you open a file on your phone or keep a notepad with you specifically for a Drs visit (I have a journal and a notepad on my phone) and as I think of them between visits, I write them down, or input into my phone.
Now all this being said, I try my best not to be demanding or rude, but I know what I will and will not do.
If a doctor or care team cannot quantify my requests then, maybe I need to find a new care team.
It’s pretty simple. Be a patient that knows their own health inside and out and be in control and understand what’s going on, just like you want your care team to be.
I have gone into anaphylactic shock from allergy shots, I have a latex allergy and there are many, many places/hospitals/Drs offices, etc., that while they say they look at your chart, let’s face it, they may see 30 patients a day or more and frankly, reading everything in your chart is not something they are going to do. They read the last visit, your allergies (if it pertains to them) and they will read the high points.
So all that being said, here are a few things I do, to be totally in control of my healthcare.
- The list. Name, DOB, Allergies, Medications, with Dosages, last filled dates, and why you take them (there are some medications that are not prescribed for their original use), diagnostic history, surgical history and care team with addresses, hospital affiliations and phone numbers/fax numbers.
- Get a copy of everything you sign and get a copy of the results of each test you have done. Thanks to Electronic Medical Records this is so much easier now.
- Be informed. If you are going to a doctor for a specific reason, you need to know what you are going for. I’m not saying read the PDR on the subject but it doesn’t hurt to know the terminology and/or the things that are important to what you have the appointment for
- Make a list of questions. Above all, do NOT wait till you get in the office. You will NOT remember. There is a real thing called White Coat Syndrome, it makes you forget, makes your BP go up, makes your heart rate go up and puts your entire body into an “alert” state of mind. No matter how comfortable you are with your doctor.
- BE HONEST. I cannot stress this enough. If you drink alcohol or use recreational drugs or even vitamins and OTC meds. Those can and will interfere with some medications and or anesthesia. It is VITAL that you be honest 100%
- Keep your appointments or at least have the courtesy to cancel them. Dr’s are busy. Waiting on a no-show apt, does several things. It causes the clinic to work when they could have avoided, it delays the office while they are adjusting schedules on the fly and putting your records back where they belong. It can also keep patients that need your appointment, from getting the care that they need. It’s a courtesy. Treat the office the way you want to be treated
- Above all, if you cannot afford your copays and your percentage of testing etc., the doctor has NO CONTROL over that. Talk to the office staff. They are your best person to discuss those things with. Your nurse has no clue how much you owe, or how much your insurance will pay either.
- If your doctor requires further testing, it is ultimately YOUR responsibility to follow through with your insurance company and make sure all certifications and authorizations are in place. It is also your responsibility to verify that each doctor, therapist, anesthesiologist, etc. are in your network. Trust me, the hospital will not verify the ancillary staff. They go with who is on rotation and put you in their rotation. If you need a certain Dr, therapist, home health care, ancillary facility etc., follow-up and make sure they are in network for your insurance. You are you best patient advocate. NEVER assume that someone is going to do it for you
- If you cannot afford a test that your doctor orders, as long as it is not elective, there are ways in place to help you pay for it. That doesn’t mean that they pay for it, it only means they help you make it where you can afford it and/or make it where payments are affordable.
- Deductibles are expensive and it is required to be paid. It is actually part of the contract your insurance company signs with the facility. Ask for a payment plan, see if they have a cash percentage to help you pay in cash and/or talk to the financial help staff or patient advocate. There are ways to get the care you need, when you need it.
- If you are going through a catastrophic illness, like cancer or a transplant, etc. One of the things I remember our advocate telling us and it was one of the best pieces of advice I ever received. Do NOT look at your hospital bill, while you are still receiving care.
- Because first you aren’t done with your care and you need to be focused on your health.
- You never know exactly what your insurance will end up paying
- If you don’t have insurance, there is a law, that healthcare facilities are required to treat you as long as what they are treating you for is medically necessary and life-threatening (that’s two key words you need to remember)
- There is that white coat syndrome thing going on again in the background. And it goes back to you needing to focus on your healthcare
- When all treatment was over and we walked out of the hospital after my husband had his cancer and transplant and all the treatments etc. We ended up owing $150.00. The amount of our deductible
- If you are going to take control of your healthcare, take total control. You are the patient and it’s your body. Yes the doctor has the degree, but I reiterate, you do not have to say yes to every single blood test, or diagnostic test. Discuss it with your doctor. Why? What will happen if I don’t do it? Is it medically necessary? Is it going to make a significant difference in the outcome of my health in the long run? Is there a test that can be done in place of a certain test that isn’t as expensive? What are the side effects of this medication? Is there anything I need to know about this medication, like can I be in the sun, drink milk, eat acidic fruits, does it need to be refrigerated. Do I need to be sedated, will I need a driver, what are the lasting effects of the medications. Is there an alternative to the medication like a natural solution etc. (if you believe in using them)
- Ask the Dr to write the instructions in that journal I talked to you about, or better yet, ask them to repeat it and you write it in your hand writing.
- Take someone with you.
- Treat your entire care team the way you want to be treated, from the person that takes out your trash in your hospital room, to the person that takes you out to the car after a stay, your valet attendant, your check in person, the person that takes your blood pressure, etc. You may need something later, and that person might just be the person that can get it for you.
- Believe in your care team. If you can’t trust them 100% or even any percent, it’s time to find another care team. If you are in a place that you do need to find another care team, TELL the current one why. They may have no clue that something is going on in that office/facility that makes you uncomfortable. Communication is key with everyone. Writing a letter firing your current provider is a normal thing. They get it. They understand it. Now that being said, remember that if you are a very difficult patient they can do the same!
- Except for mail in pharmacy(s). Pick one pharmacy (if you have insurance) and use only that pharmacy. Also, one other thing I do, is I take every RX that I am given, back to my primary care physician and let him re-write it. I have one Dr writing my RX and one pharmacy filling my scripts, etc for my diabetic and COPD medications because they are a specialty pharmacy(s) for that. Now if you are a cash patient, it is totally understandable to shop around. However, even if you have insurance, use the generic scripts at your major retailers. If you are a cash patient and must use several different pharmacy(s) to get your meds reasonable, be sure and put where you get them filled on your Medical Record that you make at home. Being up front and honest again, with your doctor about finances when it comes to your care is the only way he can treat you. If you can’t afford a medication after you leave his/her office and find out the cost is gynormous, call them back and explain. There are many alternatives to many medications. Drs are going to try to give you the best, not because they make money, but because they want you to have the best medication for what you need. That newest medication may or may not be the best also.
- Never call your doctor and say things, like well it’s in my record, you know what it is, or you know it’s that little blue pill. Trust me, they don’t know. When you aren’t in front of the doctor and he/she doesn’t have your record in front of them, they don’t know what illnesses you have, what meds you take, what insurance you have etc. Now some Drs may know a lot of their patients by name and more than likely that is your family practitioners more than anyone but don’t expect them to know you by name, little blue pill, the one with the red hair etc.
- If you call during clinic hours; know ahead of time, you aren’t going to get to speak to your doctor. They are in clinic seeing many other patients. You probably won’t even talk to a nurse. You will get voice mail. Be specific, leave your full name, date of birth and exactly what you need. They don’t need your life history. Just your questions, statements. Allow them 24-48 hours to get back to you, if it is an emergency, you need to be calling 9-1-1. Now that being said, if it is a clinical emergency, like something hasn’t been done and you only have a day or so left to get it done paperwork wise or things like that, your best resource in that office is the office manager. They have the access to the Dr. and the Staff to make things happen.
- Don’t get frustrated with staff when they ask you your DOB over and over and over. Sometimes several times in the same visit. You could not be the only John W Smith in Podunk TX with red hair. Patience is key. It is for your own safety that they make sure they have the right patient and the right record in front of them. In fact, get in the habit of saying, this is John W Smith DOB 1/1/1950. It will help the Dr’s office out so much. Also speak clearly, enunciate and be specific. Usually the person answering your phone call more than likely is in a room with several other people and may not hear you
- Do not take no for an answer from your insurance company if they turn you down for a procedure or test or anything that your Dr deems Medically Necessary. Appeal it, Ask for their Advocate, ask for Corporate. Someone can say yes if the Dr. says it is a medically necessary procedure.
- Last and certainly not least, above all, you never have to take no or yes from your insurance/Dr etc. You are the last say. Granted, your Dr must make the orders, but you can say, no I don’t want that test, and yes I do, and if you are uncertain about something ask, if you want to know more, ask.
Blank Medical Record File Here is a downloadable file that is like the one I use. The only thing I do not have on it is my pharmacy listings, but you could make your own space for it. If you would like one in a PDF format please contact me below
Everything that I have stated above is my opinion from my experiences with the health care system in the state of Texas. I do NOT have any kind of medical license at all. I will not give you medical advice. What I am giving you are key guidelines to make your healthcare experience go easy and to help you maneuver the systems. Above all, please seek your Dr’s care and advice and if you have a life threatening emergency please call 9-1-1
Also my advice is given from the perspective of a person with Medicare. Although most health insurances work the same way. Just different ways of getting to the result. The Insurance Company is there to make money, so approving your procedure is against their bottom dollar. Go higher than Customer Service if you have to. Another aspect is that I have not only been a patient for this many years, I have worked in a Family Practice Setting and in hospital/clinical side of things. I’ve seen both sides and was very
Watch for my next posts, on the best smart-phone apps to use to help you in medical care and also medical terminology that may be foreign to you. If you have questions about either of these, please fill out the contact form and I will do my best to answer them in the next post.
I will publish into this series once a week and you can find it on my blog, on both of my Facebook pages and every social media page that I have! Here are the links!
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