Dear patient: I am sorry you are so frustrated with me. I'm frustrated too.
People used to look on me as a good thing, but now everyone makes me out to be public enemy #1. It's not my fault. I was made to give you what you need: medical care; but then they kept changing me and making things harder. One side doesn't seem to know what the other is doing. Changes are made without realizing the consequences. Now instead of giving care, I just make it harder. Now instead of making people get better, I actually harm some people.
It makes me sick to think about it.
I don't want that to happen to you. I don't want you to get lost in the paperwork, rules, authorizations, and red tape that seem to define me these days. So instead of being lost in the system, take my advice to live by as you go through me. I mean that literally: these rules may just be the difference between living and dying, so listen closely.
1. Find a home base.
There has to be someone you can go to for trustworty advice. The rest of care is confusing, and you probably won't know who to trust. Some people will lie to you and others will just confuse you. You need a translator. You need a mooring in the turbulent waters. You need somewhere you can go to orient yourself and know which way is up.
That person may be your PCP - that is the best-case scenario - but it may be someone else. Find someone who doesn't intimidate you who can answer any question you have. Ask them lots of questions.
2. Don't fragment your care.
Some people think that healthcare is like going to the supermarket. The shelves may be in different places and the prices may vary some, but the basic stuff they sell is the same anywhere you go. This is a dangerous way to get care. The more places you go, the less each place will know about you. Doctors who are seeing you for the first time can't do as good of a job as those who know you well. Plus, the more places you go, the better chance that you will get bad care. Not all doctors are created equal.
So if something isn't an emergency, don't go to the ER. What constitutes an emergency? Not a baby crying during the night. Yeah, it may be more convenient to go to the ER or urgent care center (as you don't miss as much work) but you may pay a big price for it. If you can wait to see your doctor, do it. If you can't get in to see your doctor when you are sick, then maybe you should find another.
3. You are your own keeper.
One of the biggest mistakes people make is to assume someone is watching out for them. They get tests done and assume no news is good news. They go to specialists and assume their PCP knows about it. They spend weeks in the hospital and have all of their medications changed, and think that this information is passed on. It may be, but often it is not. The only one who knows about all of your care is you. The only one who can reliably watch out for you is you.
I know you like your doctor and think she is on top of everything. Unfortunately, good people are stuck in a horrible system. A ton of care is done blindly - without any inkling of what is going on at other locations. You must make sure these parties communicate. You must make sure news gets back to your PCP.
Does this suck? Yeah, it does. Big time. Why should you have to be the record keeper? Why should you be the watch-dog? It's my fault. I give no reason at all for doctors to communicate, but instead discorage them from doing so. Everyone is working hard to do the job in front of them, and once you are gone from the hospital, specialist, or ER, they have no motivation to communicate. In fact, doing so loses them money.
Some are great at communicating, but many are not. Don't gamble with your life in this area. Make sure that communication happens.
4. Don't BS
If you can't afford a drug, don't act like you are going to take it. If you are scared about a brain tumor, don't assume the doctor knows your fear. For some reason, some people feel the need to do PR work when seeing the doctor. They want to look smart and strong even when they are confused and weak. This is pure stupidity.
Tell the truth. Say what you are feeling. Express your fears, and ask as many questions as you need to ask. This also holds true if the patient is your elderly parent or your child. If you wonder about the advice you are getting, get a second opinion.
5. Famous people can be idiots
Oprah is fun to watch and she is a genuinely smart lady, but she isn't a healthcare expert. I can't be so gracious with other celebrities. Famous people like attention, and so they will usually get it any way they can. Many of them think that their soap-box makes them smart. None of them are likely to show ignorance - they are good at faking it.
The fact is, they are probably famous only because they are good looking. You don't see many ugly famous people. This is a bad way to seek medical advice. Would you choose a surgeon based on their sex-appeal? Would you trust the life of your child to someone who got famous because they looked good naked? Don't be a fool. Trust people who are trustworthy; not people who look good in front of a camera.
6. Don't overdo it
I can only do so much for you. Everyone dies and most people suffer in life. Some people have bought into the American mindset that says all pain should be avoided. This is a bunch of crap. Don't medicate every struggle or seek solution for all suffering. Some people seem surprised that life has these things in it. Don't be; it's normal.
I don't say this because I like to see people suffering. I say it because people are putting unfair expectations on me. I can't beat death. I can't do the "happily ever after" thing, and I only have so much money. Plus, sometimes people hurt themselves by seeking too much treatment. There are docs out there who will give antibiotics for every runny nose and others who dispense narcotics like candy. Don't go there. The price you pay is far more than monetary.
That's just scratching the surface. There is so much more I could say, but the politicians are beating at my door and I have to go. Just remember that nobody else lives in your body. You are the bottom line when it comes to your care. Yeah, I may make it tough sometimes (sorry about that), but that should only make you fight harder to make sure you get the care you need. You can get good care, but it doesn't happen if you are passive.
I am about to get a big make-over soon, so the walls of my maze will change. Chances are, however, the advice I just gave will still apply no matter what I end up looking like.