March 21, 2012

Being a Good Health Care Advocate

My husband recently spent 13 days in the hospital, in both the ICU and on the regular care floor.

He has had MANY hospital stays.

After this last one, I quite honestly don't know if he'd have been discharged when he did, or be doing as well as he is, if it weren't for myself, our family members and Mark's kidney doctor being right there to advocate for him.

I say that because there is a serious lack of proper communication in hospitals. Not only that, but probably half of doctors and nurses don't treat patients and their families with respect.

I promise, this is not me being defensive or overly sensitive or whatever else it might be. I have been Mark's significant other for nearly 18 years now. I've been around the hospital block a time or two. I really do know of where I speak.

So many medical professionals think us average schmoes don't know our asses from a hole in the ground. That, or they're just seriously lacking in bedside manner. Either way, they forget that the person in the bed is a human being who is loved.

Some are amazing. Some will listen and answer the hundreds of questions you throw at them with patience and sincerity, without dumbing everything down. Them I love. Them I want to take home with me and make a part of my family. And when they're being awesome like that, I thank them profusely. I am sure to let them know how much I appreciate how well they're doing their job.

But the ones who come into Mark's hospital room and act like my presence is a nuisance, or like they think I can't possibly understand the big words they're using because I didn't go to medical school....they can kiss my ass. And not just me, but anyone they treat that way, you too, should not stand for it.

Doctors and nurses know what they're talking about medically, and you can get a sense of just how much they know and if you can trust them with your loved one. But those of us who love someone who is sick, we know the PERSON they're trying to treat. And someone like me, who loves someone who is chronically ill, I know just as much about Mark's medical history as he does. The two of us got this. Both of us can comprehend what is going on, we can learn and adapt. Yet still, we are underestimated. And I just don't think it's OK.


Patients and their loved ones have the right to ask as many questions as they need to, and they should. No one should take what a doctor tells them without asking questions. Everyone should leave a doctor's office or hospital understanding what is going on and what is being done about it. Everyone, the doctor and patient alike, should be on the same page, with the same goals in mind.

What I said about the lack of communication in hospitals? That is like ten times more frustrating than being talked down to. The latter is annoying, but you can brush it off. When the doctors treating Mark won't TALK TO EACH OTHER, I have to get pushy. And then I look like a bitch. I really don't like looking like a bitch.

But it's not MY problem, it's theirs. During this last hospital stay Mark had his nephrologist (dialysis), a couple of cardiologists and either critical care or floor docs overseeing his care. Once he started improving and was moved out of critical care, I swear if we hadn't made a bunch of noise about getting him discharged, he might still be there.

Perhaps that's a slight exaggeration, but you get the idea. He was doing well enough to get up out of bed, use the bathroom on his own and sit in other parts of the room, even leave his room for a little walk, yet they were making no moves towards releasing him. When we asked about discharge, everyone was clueless! The nurse didn't know what the plan was, nor did the Hospitalist (floor doc). We asked them to get his doctors on the same page. It took 2 days. Mark was not happy.

And then....and then! The biggest problem was the cardiologists. Mark was in the hospital for heart problems, yet there wasn't a cardiologist in sight. Or, they would come, read his stats, make some notes in his chart and just leave without talking to us. I started referring to them as ninja doctors. When one of them finally showed himself, Mark read him the riot act. He felt like they had written him off. It was seriously ridiculous!

Here's the thing. Yes, doctors and nurses are highly trained individuals who most likely know what they're doing. But, we know what we're doing too. They know medical stuff; we know personal stuff. And then when you're like Mark and I and have been dealing with this crap for ages, you also know a lot of medical stuff.

I love Mark's home health nurse right now. She is one who did not walk into our situation and assume we know nothing. She came in with an open mind, listened to us and determined that we have things well in hand. She is impressed with our knowledge of Mark's meds and what he needs. I am impressed that she sees it.

It's a matter of respect. If doctors and nurses want patients and loved ones to respect them, they need to respect us too. And in the absence of that, we must be advocates.

The person in the bed is a human being who is loved.


53 comments:

  1. Yes. This.

    My husband has had multiple stays in the hospital over the last three years.

    He and I know what is going on and we know the best way to treat his ailments.

    I have literally argued with the ER doctors to get him the care that he needs. It can be utterly ridiculous.

    I have also had ER doctors roll their eyes at me and act like I have no clue as to what is going on. It is those moments where I have to keep myself together and not explode in anger.

    Yes we have to advocate. It is a must.

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    1. And isn't it exhausting? I just have no idea why a doctor would want to make a very stressful situation more stressful.

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    2. It is so VERY exhausting.

      Sometimes it's the nurses AND the doctors. I've run across a few nurses that I would have liked to throat punch. They have no bedside manner at all.

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  2. There is no such thing as Dr. House. I will never forget going to the Doc in the Box for a Cortisone shot when my eczema was at it's worst. My dermatologist couldn't see me for two weeks. The guy says, so what's going on to day? I said I have eczema and I need a shot. He responds by barking at me that he did NOT ask for a diagnosis! Ummm kaaay. I've only had this condition for 30+ years jack hole! Not at all as serious as what you are going through but everyone has a story! And that was mine.

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    1. How rude! That's the kind of thing I'm talking about. Not cool.

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    2. No kidding. I think sometimes it becomes so routine to the doctors that they just turn off any emotion or lose patience b/c they don't want to explain things 100 times. I get that there are patients who don't care and don't listen to their doctor, but for those of us who do care and ask questions and take an interest in our health in the health of our loved ones, a few minutes of their time would really be appreciated.

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  3. I'm sorry that you had to deal with this. Like being in the hospital isn't stressful enough!

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    1. They just really need to put some more thought into it, you know?

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  4. that's a general problem in all professions I think. People are capable of performing the technical aspects of their job, but fall down communicating it. Hospitals seem like they're about the worst.

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  5. You really do have to be your own health advocate. My uncle was sent home from the hospital diagnosed with pnemonia, in the lung that had been removed about 40 years previously. Argh. Unfortunately, even though they act like God some times, it really is a "best guess" a lot of the time. There are lots of great health care people out there, but only you really have your best interest at heart.

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    1. Wow. That was a bit of a FAIL, I think!

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  6. I've heard this so many times before with friends in the hospital, and from my own limited experiences there too. You should read my friend Megan's post up at our Blog Bash - Megan Pheif (it's #72) and go leave her a comment because you two I bet would be kindred spirits in a way. She has a son who is in and out of the hospital and also has a very serious condition - but go visit her and say Hi. I think you two should "meet." (-: I always draw strength from people going through similar stuff that I am.
    And now on to more important matters: DID YOU GET A HAIRCUT? You look FABULOUS!!

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    1. OK, I will have to check her out. And yes, I did get a haircut - kind of a drastic one!

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  7. This is a really good, thoughtful way of laying it out, Jen. Doctors and nurses and other health professionals see so many patients every day that I imagine it's hard for them to stop and really look at someone and think about the human behind the condition. But they absolutely need to.

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    1. I know they must maintain a level of detachment, but still...there's gotta be a middle ground, right?

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  8. It's awful! My grandmother was in the hospital 2 years ago this summer (and passed away after we got her out of there and into hospice) and it felt like the doctors would try to find the 35 seconds we went to the bathroom or stepped out to use the phone to sneak into the room and do whatever it is they do or don't do. It sucks it has come to this.

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  9. Ugh, I'm sorry you guys have to deal with this. So stressful

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  10. I'm sorry you had to go through this! I work as a case manager at a hospital and it doesn't HAVE to be this way, but it often is. Have you considered filing a complaint? I'm sure you have a lot of other things you would rather do, but I know at least at my hospital, complaints are taken seriously. Thanks for sharing this experience.

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    1. Yeah, filing a complaint = Ugh. I would if I felt what happened caused my husband harm,however.

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  11. I am a nurse and the minute I don't care about the patients is the day I leave the profession.

    Over the years I have learned that what the patient has to say is very important. It's important from a point of view of the medical staff even just for the fact of understanding where the patient is emotionally and physically.

    I know that I am frustrated because we are so understaffed that I don't always have the time to listen or respond. And it's just as frustrating for me as it is for my patients.

    Good for you for advocating for your husband.

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    1. I love me a good nurse! You sound like one, so thank you!

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  12. I agree, advocacy is important. I'm so glad you have a good home health nurse, because after the roller coaster ride, it's probably much needed. Hang in there Jennifer!

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    1. Totally still riding that roller coaster.....

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  13. Yes. This occurs more often than not, unfortunately. I don't really care about the reasons they offer for their arrogance. It's just wrong. We couldn't be under more stress than when a loved one is in the hospital. We need to talk about it, as you have done. Nice post.

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  14. It's crazy to me that, while doctors are so trained, they aren't always aware of what's actually happening with their patients. I know someone who is on a transplant list. Their doctor's office called to tell him they were going to start him on a specific medicine....yeah, he was already taking that medicine. Luckily, his wife is an RN so he has a good advocate on his side!

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    1. I just want doctors to strike a balance between *just* doing their job, caring and getting too involved, you know? I understand they have lives of their own. But they also have my loved one's life in their hands.

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  15. I've been a nurse for over 15 years, all of it it trauma or ICU or ER. All of it at horrible times in my patients life. I know that I am one of the ones that cares, that remembers how my patient's loved one takes their coffee, that waits to carefully translate what I doctor has just rushed through, that gets pissed off when services aren't working together or communicating well for my patient. I also know of lots of others like me. I have worked side by side with them. But those ones that don't...it does more destruction than I can make up for in my shift. And I've had to work with those ones too. I am truly sorry to have read this, to know that this happens everywhere and everyday.

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    1. Thank you for being one of the good ones!

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  16. I remember a while ago that there was a book about EQ or emotional intelligence. The ability to connect with people and heal them emotionally while healing them physically is something to aspire to in the medical profession. This was a great reminder of what it's like for those whose loved ones are sick. Thank you for your openness in talking about your husband. Hoping the best for your family, Erin

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    1. I sincerely hope my openly talking about what we go through will be helpful not only to myself as I process these events, but also to others.

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  17. I wish every medical professional could read this. My mom spent 8 years in a nursing home, and the last 2 years she was hospitalized in critical care close to a dozen times with sepsis and other complications. Each time, it was like it was my first time and it was like it was their first time too dealing with someone whose body was so broken and whose health was so fragile. But when a good doctor or nurse was there - what an invaluable resource that person was. Really made everything so much better. Sorry you went through such a tough time.

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    1. It does make things so much better! The nurse who will take the time to walk you through what is going on, who will offer you a cup of water or a tissue. Those things are wonderful.

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  18. Oh girl, don't even get me started! I went thru it with my son when he was a baby and admitted for 10 straight weeks. That's when I learned to stand up, to stand my ground and to make a stink if I had to. When my dad was admitted to ICU in Congestive Heart Failure before his kidney transplant, I got to put those skills to use. It amazed me how rude or indifferent or downright obnoxious some of the doctors were (especially the specialists). I won't go into the whole saga but I'm sure my name is on some kind of a list at that hospital now. Whoopsy. I'm so glad your husband is home now!

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    1. We only want the best for our loved ones. That shouldn't be too much to ask.

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  19. It makes me sad to know that there are enough ninja doctors and asses in the medical profession out there, that necessitated you writing this. Thank goodness you're there for Mark, to advocate for him.

    My husband and I are the kind of people who ask a lot of questions when it comes to healthcare - ours and our child's. And doctors and nurses are always surprised and ask us if WE are in the medical profession.

    Anyhoo, am glad that you managed to get Mark home and that you have a great nurse.

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    1. The more time goes by, the more I fear they were so stealthy cuz they didn't wanna face us. We have to face and deal with the reality and they get to be cowards? Not cool.

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  20. Bravo to you for standing up to the professionals. Often time, consumers are too shy or uncomfortable to speak their mind. I have had to throw tantrums in the ER before, just to get the appropriate care for my loved one.

    way to go!

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    1. The ER can be the most frustrating place, cuz they are so hyper-focused on just taking care of whatever immediate problem you came in for, that they very easily lose sight of the whole picture.

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  21. Your fearless advocacy is inspiring. Keep writing about it, too. Your voice is empowering for others in the same situation who may feel intimidated to speak up.

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    1. I feel intimidated in many situations, but this is not one of them.

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  22. Preach on sista! Sometimes it can be so intimidating to speak up, but it is an absolute must. Our own lives and the lives of the people we love depend on it. My friends father recently had a stroke and the neurologist is a total ass. He wouldn't answer any of their questions and talked to everyone like they were idiots. I was surprised to read that the hospital wasn't trying to push Mark out. They were trying to get rid of my friend's father the very next day! When it was time to send him to the rehab facility the ambulance had the wrong paperwork - half of it was my friend's father and half was some other guy's. And THEN when they got to rehab they had absolutely no idea that he was coming. I know there are a lot of good doctors out there, but things like this and what you went through with Mark make me furious and terrified.

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  23. Oh geez. My comment appeared when I thought it had been sucked into the interwebs. Now you have three comments by me. Lucky you.

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  24. Uh and I meant intimidated not intimated. I'm walking away now...

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  25. yes. you know the history. the life that is on the line. stay with him, speak for and with him. let your voices be heard.

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  26. My mother always told me to be my own advocate when it comes to life, but especially health. She didn't know how wise she was, as it was years later, after several doctors brushed off the skin discoloration she found as "nothing to worry about". It took 6 or 7 doctors before someone figured out that it was cancer.

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  27. When I lived in Spain, it was totally up to the families to care for and feed and clean the patients during a hospital stay. It was problematic, of course, for those who didn't have family members or friends available. And it's a good reminder that we're not all that far away - we may be able to order from a hospital menu instead of rely on home-cooked food brought in, but we need advocates and strong, bitchy friends to speak up. Great resource for those who are less assertive in hospital settings!

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    1. Is it still like that in Spain? That seems crazy.

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