April 15, 2009

Pardon me while I vent a bit in hopes of helping someone else.

Some of you who read my blog already know my family story. I'll make the story short for those who don't. My sister walked into the hospital back in 1984 when she was just 18 years old. Went to the hospital after being hit in the throat playing basketball. No injury, nothing wrong, but her coach wanted her checked out. She didn't walk out. Instead we took her home almost 6 months later having profound brain damage. She could no longer walk, talk, eat on her own, or move any part of her body voluntarily. We were told the doctors had no clue what happened. The last thing we were told in the ER that night before they wheeled her away she needed to have surgery and if they didn't do it immediately my sister would stop breathing and die. That was the last time we saw my sister "healthy" and "functioning."

As time went along and evidence revealed itself, we learned that my sister wasn't given any oxygen during her "minor" surgical procedure. We also learned that this "minor" procedure wasn't even necessary. There wasn't anything wrong with her. I was young at the time, only 13, but I remember wondering WHY

Why did the doctors lie to my mom about how serious my sisters condition was?
Why did the doctors lie about not knowing what happened during surgery?
Why wasn't someone making it all better?

Over the past 25 years I've met many families who have been left to deal with the "incompetence" of doctors and nurses. I say incompetence because dropping someone on their head or amputating the wrong leg is not a mistake. A mistake is when a doctor gives his/her opinion on what they think is wrong with you and they are wrong on the diagnosis.

Don't get me wrong. I know there are excellent doctors, residents and nurses out there but they are few and far between. My sister has an excellent neurologist who cares deeply for her and does his best when treating her, but he is rare. And before you jump to conclusions, I have had my fair share of contact with doctors and nurses over the past years. My opinion about the medical field isn't based on a couple bad experiences it is based on hundreds of bad experiences.

Having these experiences and wanting to make sure others don't is why I write this post. I compiled a list of things that I believe can help put you in charge of your care if you ever need to go to the hospital.

Going to the ER or the Hospital:

1. Never forget that you are in complete control over what happens to you. You can refuse any test that you aren't comfortable with, you can refuse any treatment. Same for those you have guardianship over (or your children).

2. Don't forget to ask questions. Never assume a doctor is going to tell you everything. Doc's usually don't volunteer information, especially the negative side effects of a treatment (would you want to volunteer that the blood pressure meds that your giving could potentially kill the patient???? No, not if you don't have to). If your doctor wants to give you medication, ask what the side affects are and how to spot problems if they arise. It is one thing if a doc tells you that a life threatening rash could happen from the meds he's given you but where does the rash appear, what does it look like. If the doctor wants to run tests, make sure you understand the procedure start to finish. Many times doctors order scans and with most scans they may use a contrast dye. If contrast dye is used you can have a life threatening allergic reaction. By law they are required to tell you that but I've been in situations where they didn't volunteer the information.

3. Don't let doctors act superior to you because they aren't. In hospitals there are patient advocacy groups. If you are questioning a doctor and he becomes hostile in response to your questions or concerns, immediately stop the conversation and demand to speak with the patient advocate group at the hospital... he'll change his tune then. I would do the same if they talk circles around you and refuse to give you information in layman terms.

4. You have the right to refuse treatment by a resident and insist to be seen only by a staff doctor. Many hospitals have resident physicians. I always refer to them as "students" because that's exactly what they are. They might be a first year resident, 2nd year resident, 3rd year, etc... but a student nonetheless. These people are overseen by a staff doctor. They screw up a lot! Now, I know that a resident needs experience but their is a limit to what experience I will allow them to get on me.

Example: my sister had to have an appendectomy in 1983. Every time a team of residents entered her room they'd ask my mother to step out. It happened 7 times in 24 hours. Finally my mother asked my sister what they were doing every time they came in to her room. My sisters response "pelvic exams." My mother hit the ceiling and ended up screaming at the next person who walked in the door reminding them it wasn't free feels day but being naive at the time she didn't realize she could refuse treatment by residents.

You can demand a staff doctor. Doesn't mean he/she will come to you immediately. I've demanded to see a staff doctor and waited 4 hours to see him, but it was worth it. BTW/he wasn't too happy that his services were demanded but ask me if I cared.

5. Some nurses aren't too swift either. Your lucky if you get the angel that actually cares about you. I've had good ones and I've had bad. They are easier to replace at a hospital than a doctor so feel free to bitch about them if they bug ya. Watch out for the lazy ones. You'll know a lazy bugger when you see one. They are the ones that you push the nurse call light, they come and ask what you need, you tell them and they promise to be back and you never see them again. Get rid of that one right away or you'll be dealing with a headache the rest of your stay in the hospital. (and before people say "but sometimes they are really busy", I take that into account before getting annoyed. If I've asked nurse "I don't have time for anything but blabbing to co-workers" to bring me seizure meds at 8 am and I still haven't received them at 11 am, it is time for her to go.

6. Remember, you need a doctor to order EVERYTHING. You can ask a nurse for medication but unless the doctor orders it, you aren't going to get it. Make sure when you request tests, medical supplies or medication from your nurse that you also ask her how long it will take to contact the doctor and then how long after he gives the order it will take to get what you want. Note: Dr.'s who see patients in the ER cannot place orders for things you want when transferred to floor 7. If you move from ER to a room, your dealing with a whole new doctor. Don't rely on hospital staff to remember your requests or even care about you once you are transferred.

7. Please do not treat a doctor like he's God. He/she is not infallible. They are humans just like the rest of us. They lie. I've had doctors lie to me about tests they've done, even lied to say they've seen the results of a test when they didn't (those pesky residents again). You'll get a doctor that thinks he's God but then it is your job to remind him that he isn't. Doctors don't respect people who don't take responsibility for their healthcare. The more you know and show your doctor you know, the more likely he/she is going to remain on their toes when treating you.

8. Staff physicians don't supervise staff residents. We all would like to believe they do but in the real world it isn't possible. If a staff doctor had to supervise a resident he/she would never get anything done. I learned this one the hard way. My sister had a rotation of 12 residents at one hospital. Depending on the day, I would get a different resident giving me a new diagnosis. It took me more than a minute to realize not a single diagnosis or plan of treatment was being run through the staff doctor. All of the residents had an idea of what tests needed to be done, what treatment was needed, and none could agree. They don't ask you if it is ok, they just come in with their ideas and expect you to go along with it all. Thats when I ended my relationship with the residents.

9. Don't become a guinee pig for student doctors. If you doubt that is what you are when they are poking and prodding you, guess again. These residents have to learn somewhere and you are IT. If they can get away with it they will have you upside down drinking some toxic white liquid running you through an MRI machine when all you had was a sore finger.

A recent study by the Institute of Medicine of the National Academy of Sciences estimated that as many as 98,000 patients may be killed each year in hospitals alone as a result of medical errors. Don't become a statistic!!

Remember, medical students are now being told that medicine is big business. In my opinion if healthcare is big business than we, the consumers, deserve a refund if we are unhappy with the service we received. I also propose that incompetent doctors be sent to prison but I'll save that for another post.

egassner said...

What a great post Michelle! I'm so sorry to hear what happened to your family and your sister, but I hope this will open the eyes of all who read. My mom having worked in the medical field most of my life, I have a great understanding of what you're talking about...Dr.'s playing god, ect. But it's good to see someone telling the whole blogging world!

Anonymous said...

Elizabeth is right: this is a marvelous post! May I have your permission to put the link on FB and Tweet it also?

I'm think I need to print it out and read it once a week and every time before I go see a doctor (which is, luckily, rare).


Michelle said...

Thanks ladies for understanding my point of view! Sure Teresa, I would appreciate your linking here :)

Jen said...

I think you post has a lot of merit. Yes, residents are students at various levels of training and yes, they do make mistakes. All other levels of ancillary help in the hospital are prone to mistakes. That's no secret either. But, I take offense at the tone of your post in that it would seem that you are pretty much telling your blogging world that the medical community in general are just a bunch of lazy liars and as a critical care nurse of 15 years, I take deep offense to that. I don't think there is a family out there that hasn't been negatively affected by poor medical care, myself included. It's obvious that your sister has had a rough road and you/your family have suffered along with her. As a consumer you have rights but you also have responsibilities to yourself and your loved one. We lazy medical personnel try to be as perfect as we can and dole out as much compassion as humanly possible in the time constraints we are delivered. It is incredibly hard to work around families who take up residence in the patient's room, leaving barely a footpath to move in. Families who take constant notes regarding the caregiver's every move can be unnerving, but totally understandable. I have nothing to hide in my care. It is true that if your doctor doesn't order your medications and treatments, they don't just suddenly appear at the moment you need them. Fortunately, many of us lazy nurses think for the patient and ask ahead of time to get these medications and treatments so that you don't have to suffer. If you continually go over the head of the residents they won't learn anything and then they will be that much more "incompetent". I agree that there are times when a person must climb that medical ladder, but really..EVERY time? For your information, if there are residents, then there are fellows (above them...their mentors and a step beneath the staff/attending) and a team approach to decision making. From my 15 years in ICU, I can tell you that even though things may not always run smoothly with the team approach, there is unanimous decision making and guidelines that residents are delivered regarding the care of a particular patient. If I don't like something the resident orders, I take it upon my lazy self to advocate for the patient and see if a more suitable option is available. For instance, a patient with excruciating pain and only Tylenol ordered will usually result in calls to get the order changed. This is my lazy contribution to the suffering patient. Isn't that horrible? How dare I do my job well. That would ruin what is becoming public opinion of a totally incompetent medical society. As I said, I am deeply offended by some of your comments. There are a few things I am...compassionate, diligent, safe, educated and a voice for my patients. What I am not is lazy, sloppy, careless, egotistical, or above learning from my own mistakes. I am sorry you suffer with your situation, but please don't make it everybody else's. There are miracles that occur every day and usually it has nothing to do with our "healing" capabilities. There are other powers in charge.

Michelle said...

What is more threatening to you about my post, the fact that I’ve given a voice to the 98,000 people a year who die because of the incompetence of doctors and nurses or because you yourself haven’t been as diligent at your job as you should have been?

From the tone of your post I would have to assume that you’ve been replaced a time or two in a hospital. The fact that you have no empathy for those who have dealt with the idiocy of medical personnel doesn’t surprise me. It actually lends credence to my post and I thank you for that.

If you are the nurse you claim to be my post wouldn’t have put you on the defensive. You wouldn’t have any problem with individuals knowing their rights when dealing with medical professionals. Why does that threaten you so much? Why does it bother you if a patient knows and demands their rights when paying hundreds, sometimes thousands of dollars for medical care?

I have friends that are CNA’s, LPN’s, RN’s and yes, even a couple MD’s. They all know how I feel about hospitals and how I feel about MOST medical professionals and guess what they say??? YOU ARE ABSOLUTELY RIGHT!! Medical professionals who are doing a good job don’t feel the need to defend a system they know is failing miserably.

Let me check my memory for some of the horrible things that have been done to my sister by medical professionals. I’ll list a few, if I were to list all I’d be here for weeks.

RN: burnt my sisters scalp with a blow dryer, giving her 2nd degree burns.
RN: burnt my sisters shoulder by setting a blow dryer on it while it was hot. Another 2nd degree burn.
2 different RN’s: Dropped my sister on the floor because she wasn’t using the side rails on her bed.
RN: Was overdosing my sister on medication because she wanted her to sleep more often.
MD: capped my sisters trach, told nurses to monitor to make sure she could breath through her mouth well, RN’s didn’t have her O2 monitor or heart monitor attached, she went into full cardiac arrest and wasn’t resuscitated for over 20 minutes. This happened following the surgery where my sister didn’t receive oxygen.
RN: continually manipulated my sisters care while acting as supervisor (lowering her dose of anti seizure meds without physician approval) causing her to have grand mall seizures, taking MD’s nearly 6 months to get her seizures under control again.
RESIDENT MD: Telling me a CT scan had been done on my sister while I was out of the hospital, insisting she’d seen the scan and it was clear. No scan had been done and it turned out the CT was not clear. (if my staff nurse hadn’t been on duty while I was out I would have never learned the truth about this)
RESIDENT MD: Telling our neurologist that labs had been done and liver functions tests were fine when labs had not been drawn and it turned out the ALT and AST were not within normal range, which did affect the course of treatment. (another mistake MY STAFF and I CAUGHT!!)

I must mention this as well. My mother had a heart attack a few years ago, she was seen by a team of Residents and Staff Doctors. Each time a new Resident or MD would come see her in the hospital she would get a new prescription for heart medication. She left the hospital with 5 new drugs, the discharge papers were signed by a resident. Less than a week later my mother was barely able to walk across the floor. She made an appointment with her regular doctor and it was discovered that she was given 3 different blood thinners. She was told it could have killed her if she hadn’t gone in when she did.

The truth scares people only if they have something to hide. You are clearly angry but the only reason my post would be so upsetting is you aren’t as good as you say you are. I’m sure all the RN’s & MD’s I’ve had problems with over the years would describe themselves as compassionate, diligent, safe and educated also. Actually most of them did describe themselves that way when they were hired.

There is a great quote about fear by Thomas Jefferson that I must share:

"There is not a truth existing which I fear or would wish unknown to the whole world."

Keep believing your medical system is unflawed. That is what keeps it from improving.

Michelle said...

One more thing about your post Miss Anyone:

Your right. Consumers do have rights and they do have responsibilities. Our responsibility is to get what we pay for. That means demanding the best and getting the best. If a nurse or doctor can't provide that service then maybe they should find another profession. What I've presented here are a few examples of ways people can demand good medical care. There is no reason someone should wait 24 hours for medications, which my sister has also had to do.

cindy said...

Michelle, Excellent, excellent post.

Having worked as CNA, medical transcriptionist, receptionist, and been a caregiver for my parents, myself, and now hubby too, believe you hit the nail on the head.

I cared about my patients and what you said did not bother me one bit because I did everything as humanly possibly to make sure I gave them the care the needed. As a receptionist I verified that I made the appointments, ordered the labs and did all that the patient needed. Did I make mistakes, yes I did, we all do, but I owned up to them.

I still hear the doctor's words in my ears in regard to my mother who had fallen and fractured her pelvic bone. "It is not as bad as she is making it out to be, she does not want to tolerate any pain." Three days later my mother was dead. Two years later my MIL fell and had the same type of fracture. She was given so much pain medication that she was out of it because the orthopedist said these are the most painful breaks.

Both of these women had chemotherapy for cancer that they had been fighting for years.

Even sadder fact was I worked for that physician that said my mother could not tolerate pain. I filed a complaint on him and was let go when they downsized my department.

I watched a resident beat on my father's back after he had a lung biopsy calling it respiratory therapy. My father's surgeon came in and threw him out of the room.

As far as not wanting famly members in the room or taking care of the patient around the family members, give me a break.... I know how short staffed all of these hospitals are. I was the one to fill my hubby's water picture, straighten his pillows, help him to the bathroom, or go to the desk and get somebody after his IV had been emptying and buzzing for 20 minutes with the light on twice with nobody coming down.

I also spent time at a hospital where they made a bed for me in the room with my hubby, brought me towels, made sure I got fed because they felt it was ridiculous to spend the money for a hotel when there was plenty of room. They felt it was important for me to be there to here what the doctors, residents, and therapists had to say. They were truly wonderful caregivers and they wanted to make sure my hubby was as comfortable as possible and taken care of as best as possible.

Did I write things down in a notebook you betcha because that way I had the questions down where I would not forget them if I did not understand what was being said or why something was done, and if I did not get an answer I understood from the staff, I would have the questions to ask our main physician to make sure we did understand what was going on.

Yes, make your lists, do not think the medical community are GODS, because they aren't. You will have some excellent caregivers and some that are horrible. If you don't like something, you definitely have the right to refuse, demand an explanation, and if needed get a different caregiver.

Michelle, you did an excellent job with the piece and as Jeff and I head into our next medical battle it just reenforces my thoughts on what needs to be kept in mind.

Hugs to you and Kelly and hugs to all of the excellent caregivers out there.

Michelle said...

Thank you Cindy for such a well written, heartfelt post!!!

Your advice has helped me so much when I've had to deal with doctors, hospitals, nurses.

Like you said, there are some excellent caregivers. Right now, if it weren't for my new supervising nurse I don't know what I'd do. I wish she worked 7 days a week instead of 5 because she is so wonderful with Kelly but at least she lets me call her anytime to ask questions.

Thanks for your tip about taking notes. I haven't done that but I definitely will from now on. Even now I'll be asked by other doctors what I was told in the hospital and I forget. Notes would really help with that.

Wouldn't it be great if we could box up those wonderful caregivers and transfer them to one hospital where we could all go for service :)