You Gotta Fight…For Your Right…by Amy F.

Amy F. shares a powerful lesson with us in her latest feature.  Check out “You Gotta Fight…For Your Right…”

 And now you’ve got that song stuck in your head for the rest of the day.  You’re quite welcome, it is a good one.  However, as much fun as writing about what the song is telling you to fight for (not to mention being well enough to do it), I’m back this month to talk about something that should be at the top of your list as a patient.  Fighting for your patient rights.

Many hospitals offer patient advocates but their job is typically to help you deal with insurance and other outside companies that you come into contact with as a patient.  And that’s great that there is such a service provided for those of you who need help.  However, something that many patients don’t fight for is the right for their care (hospitalized or not).  While this is something that I have always felt strongly about and work to do for myself, the issue became even more evident during my most recent hospitalization when I shared a room.  Yes I know, in the hospital AGAIN – tell me about it.  I think next I’m going to research honorary doctorate degrees based on hours put in or create a points program based on the number of days spent/tests done/blood taken/etc.

But I digress…As many of you who have had the misfortune of spending time either as a patient or caregiver to one who is hospitalized, you have seen that the system is being stretched to the max and is not working in favor of the patient.  And while I’m sure that there are some great hospitals out there where this is not the problem, unfortunately, I have a feeling that they are the exception, not the rule.  Staffing is thin, nurses are working long hours with more patients and physicians are in and out in the blink of an eye.  Labs are backed up, ERs are overcrowded and illnesses are becoming more complex.  All of that results in the perfect storm for errors in your care.

Personally, I have experienced nurses providing incorrect medication, transport coming to take me for tests that had been cancelled and physicians who were never advised of changes in my situation by my nurse.  Luckily, for the majority of the time I have been coherent and alert enough to be able to have an understanding of what is going on around me.  However, others unfortunately do not share the same medical status or just take what the hospital staff says as golden and that’s when the trouble can start.

During my recent stay, I had two different roommates.  The first was having GI issues and had been told by her doctor that she needed to be on a liquid diet.  Hospitality came in with the lunch menu and told her she could have minestrone soup, a chicken sandwich and cake for dessert, to which she agreed.  Because the doctor’s order hadn’t made it in for the nurse to make the change for hospitality to realize she was on liquids only.  And even more to the point of what I’m talking about is that the patient had no idea what a liquid diet was so she just figured whatever was offered to her was okay.  FYI, for those who don’t know, a liquid diet is just that – liquid items only (although I’m still trying to figure out how Cream of Wheat figures in there but that’s a subject for another article).

My second roommate had severe issues with pain and was put on several different medications to be taken at various times throughout the day.  Some were short term for her immediate needs and others were long acting.  The patient was coherent and understood that she received different medications and would call for them regularly.  But when she did, she was either ignored or told by the nurse that it wasn’t time yet.  Imagine how much easier it would have been for the nurses to keep a running schedule on the patient’s in room board so that she would know her medications and when to expect them.  That way she would have all of the information she needed to be able to track for herself.

And these are just a couple of examples. I know that many of you have experienced or seen worse but the answer to help avoid much of this is ASK.  You are the patient (or caregiver) and you have every right in the world to ask questions about your care.  If you don’t understand about a procedure from why are you having it to what to expect afterwards, ASK.  If you are being given medications, ASK what they are for and what, if any, side effects may occur.  And ESPECIALLY when being given your medications (new or otherwise) by your nurse, doctor or aide, always ask exactly what is being given to you in terms of what medication and dose to compare to what you know you are supposed to be given.  Unfortunately, I have caught nurses about to give me incorrect medications or forgetting to give me something that I was due that had I not asked, there could have been serious complications.  If you are a caregiver, it is extra important that you are aware as the patient may have been given information (or you may have patient knowledge that the doctor doesn’t) and that lack of communication could literally be the difference between life and death in some cases.

Yes, you may find that some nurses or doctors get frustrated having to take extra time to explain, but if the situation were reversed, you know that they wouldn’t want to be the one given incorrect treatment.  And if you do get push back, as I did when asking about a medication that had been adjusted from what I had usually received, stand your ground.  In some cases you can work around this with “I know you’re really busy but I was just wondering if you could take a quick minute to explain…..”.  And if that doesn’t work, yeah I have had my share of “louder discussions” shall we say with medical staff when I felt that I needed to get my point across.  Not to be recommended in all cases, but sometimes you just gotta go there.  And yes, I did apologize to the staff involved (and those in the area who heard me or about it) as well as to my roommate.  Her response – “that was the most excitement we’ve had in here, I was hoping you would keep at it.  You go girl.”

And while the main focus here has been for those hospitalized, the same applies for any doctor’s visits, tests, etc. that you have regarding your care.  I say this with a small caveat.  The internet is a great resource for information.  However, sometimes too much research can be a bad thing as you can start looking for symptoms or reading too much into what has been written that may not be applicable in your case.  And when you add in the “oh I have a friend who” or “I just read about” personal input from those around you, it can make you worry needlessly or just plain drive you nuts.  And if you have to use your “outside voice” with those people who try and give you unsolicited advice, be my guest (I fully admit I do it).  Sometimes you just have to get it out when too much is enough and besides, it can help burn off some of your frustration.

While we all may be going through different situations, the premise here is the same – ASK QUESTIONS.  It is your right as a patient to understand what is going on with your body because a) it is your body and you deserve to know, b) for peace of mind and c) most importantly, for your safety.  Make this part of your “new usual” habits and not only will you have a better understanding of what’s going on, but you’ll be taking back that much more control of your life from your illness.

And for those of you who are still stuck back at the beginning of this post wondering what song I was referencing – it is the Beastie Boys “(You Gotta) Fight For Your Right (To Party) circa 1986.  Click photo below and enjoy.

See more of Amy’s posts in our SHARE section under “Perspectives.”  She welcomes comments, so please add yours below!