During a recent hospitalization for my mom, we had trouble finding out what tests were being ordered and for what reason. Luckily, some of my mom's nurses broke the rules and shared with us the results as the doctors did not want to talk to us much and nobody could pinpoint when they would be making their rounds.
We explained that we were authorized to hear this private information so it wasn't a HIPPA concern. The nurses told us the doctors get mad at them if they tell the family the test results before they get around to it.
If I hadn't gotten copies of the hospital records on my own accord, I would not have found out half the stuff the doctors never communicated to us about her condition. They told us the hospital wasn't the place to discuss things and when we had the post hospital follow up appointments we were quickly rushed out the door.
My mom will need major heart surgery so my family wants to hire a person in the medical field that perhaps the doctors will respect better and give them more time. We noticed a patient who had an advocate on my mom's wing and the patient seemed to be getting more attentive care than others.
I also noticed the nursing staff greatly reduced in the late evening hours and my mom had several incidents where nobody responded to her call for bathroom assistance. I had observed this problem even during visitor hours.
We brought in cakes and candy for the nursing staff during her visit. We know they are overworked and underpaid but this didn't seem to help much. Nobody seemed to talk to each other...nurses, doctors, etc.
Is it reasonable to request to have a family meeting with your PCP or specialists when their patient is hospitalized? If we miss them during the rounds is it okay to call their office for an update?
What can a person do if the nurse does not respond to reported symptoms. For example, I reported to my mom's nurse that she was out of breath...very unusual...after coming from the bathroom in the hospital. I also noticed my moms arms shaking uncontrollably. The nurse assured me she was hyperventilating and dehydrated but she never contacted the doctor for a sedative or fluid drip or put her on oxygen.
I did not realize the out of breath problem was a symptom of a heart attack.
My mom went into congestive heart failure 2 days after an acute MI had occurred in the ER. The ER nurse told us her monitor beeped because of an MI but never explained what that meant to us. The doctor came in so our conversation was interrupted. The ER doctor never told us what was going on.
I didn't find out what MI meant until 2 days later when talking to the gastro after her procedures. My mom's PCP had written down in his notes that my mom had a "prior" MI which the gastro casually mentioned as if we knew. At least the PCP later acknowledged the MI occurred the first day at the hospital.
She was hooked up to a telemeter 24/7 upon admission but nobody responded to the alarm reports (many of them before her GI procedure 2 days later). They only started cardio workup when she spiked a high fever after her colonoscopy and upper GI procedures. The cardios notes said that my mom was going to be discharged after her gastro procedures until she spiked a fever. WTF?!
Is all this typical in a hospital? We are sending her to a different one for the surgery but if it runs as poorly as this last hospital I'm afraid I will be admitted in a bed beside her from the stress of it.
I already plan on camping in the room 24/7 to make sure she gets her pain meds on a timely basis, gets her food, and doesn't break a hip trying to use the bathroom if she's hooked up with cords.
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Where to find a patient advocate to hire while in hospital
- By kk_stl
- Posted February 27, 2009 at 3:40 am · 4 replies
- In Experiences with healthcare professionals
- Shared with the public
Explore topics in this discussion:
Pneumonia Cancer Heart failure Surgery Pain Heart attack Congestive heart failure Fever Stress
4 replies
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- By Sarcasma40
- Posted February 27, 2009 at 10:30 am
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kk_stl
Sorry that you are having such difficulty and concern. I believe you are doing the right thing by sending mom to a different hospitol!!!!! Get her out of there!!
My dad just had surgery for three aneurisms and got pneumonia while recovering. The nurses were vague and closed mouthed everytime I asked if the fever was the pneumonia or an infection from the surgery.
I wanted to know how they knew exactly what they were treating him for and how they reached that determination. What tests had been done?
I was trying to explain my frustration to one of the nurses when my very drugged up father started hollering. I have to stop and giggle at this scene. My dad is usually very agreeable.
So dad starts hollering we don't want the gosh darn robotic answer, we want the truth. Is there someone qualified here to just tell the damn truth? Apparently there was not, because the next person who spoke to us was the doctor and the answer was "we don't know for sure". EEEEEKKKK!!!!!!
Yes camp 24/7, be her advocate and pitch a damn fit if you don't feel your mother is being treated right. Thoses doctors and nurses are human too, full of faults and imperfections, it is only right for us to question and intervene when we feel it necessary.
I am all for patient advocates!! I hope you are able to find an advocate and then come back and share with us the process and results.
I hope things go well for you and mom. Thank God she has you to watch out for her best interests. I will pray for you all.
Stacey
- By Ecksunbeam
- Posted February 27, 2009 at 6:06 pm
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Dear KK,
I would definitely get your mother to another hospital. This sounds like a nightmarish three-ring circus to me and it must be driving you nuts trying to work it through.
At one time, my mother spent 6 weeks in intensive care. I spent the same 6 weeks virtually living under a desk (my apartment) in the intensive care family room. We didn't make any special demands, but I think it helped everybody involved by my being there. It meant that I was able to assist with feeding and just keeping a general eye on her. I held power of attorney over her health care, and much of the time she was unconscious. The doctors would come to me, explain the different treatment options available, and let [made!] me choose. It was at this point that I called my siblings together and after discussion we made mutual decisions about which routes to take. It was a very heavy burden to carry because if we made a single mistake in our treatment choices, it could cost our mother her life. Yet, when I think back upon it, I could not really have accepted doing it any other way. Somewhere along the way, I detected that my mother was suffering from a terrible fear of abandonment during her greatest hour of need. I have since come to the conclusion that this is not unusual--especially since I have now had my own personal experience with near death and ICU. Yes, it's important to keep an eye on what the doctors and nurses are doing and to have as good an understanding of the treatment options as possible, but it's probably more important for your mother's overall well-being just to know that you will not leave her to endure this very scary health crisis alone. Medical treatments are just that: medical treatments. It's love that pulls the patient through.
May the Blessings Be!
Sherrie
- By kwinner
- Posted March 3, 2009 at 12:06 am
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KK - you're a smart lady! I read through some of your previous posts, and patient advocate is always one of my first things when you have so much going on, and seemingly so few answers. There should be patient advocates available through the hospital, but since the one your at has some issues, I'd go to your county and senior services and talk to them about how to go about finding a qualified person to help you through this. But KK, you're really doing a great job getting the information, understanding what they're telling you, and fighting for your mom. I'm really proud of you! I took care of my mom for 6 years through many different cancers before we lost her 5 years ago last month. I had no idea going in, but found my way to learn how to ask question, be prepared, not let them out that door until I had answers, and reports in writing. They're her medical records, she has every right to them. As for nurses that dodge direct questions - go to the charge nurse. There is no excuse. So, you bug them, it's their job. It's good to do it with kindness, but there are times it's just all about your mom - period. Call the doctor's office if you don't get the info on the spot, you're her family, and her caregiver, your mom may have to sign something giving you access, but that's simple enough.
My father has, well, let's call them "issues" so he was shamefully absent in her illness and care so all of it fell on me. I guess if I want to share anything with you from my story, it's you can do this. It's hard, and it's time consuming, and it's frustrating, and it takes you way out of your comfort zone, but you will never regret one minute of it, and you will learn to navigate your way through it, I promise. You are, and will be the best advocate for her.
Sending you hugs and strength every step.
K
- By kk_stl
- Posted March 3, 2009 at 4:43 pm
- Report post
Thank you ladies for your encouragement but I realize my limitations. Had I known about the short of breath symptom of a heart attack I would have thrown a hissy fit and called the doctor myself right then and there instead of assuming she was in the best care. That hospital doesn't have a rapid response team to respond to anything but code blue, unfortunately.
I didn't find out what an MI meant until 2 days later. I try not to beat up on myself for not asking right then and there when the ER nurse told us she had an MI. But when the doctor came in shortly afterwards I "assumed" she would tell us anything important. I've found just the opposite. For whatever reason it is the nurses that will give you the tough news. My friend found out she had cancer this way as her doctor never told her why she needed to goto the hospital until much later.
I was a firm believer in healthgrades.com being objective, etc. but that hospital is listed as one of the safest ones in the country! lol I would say okay maybe an isolated incident but friends I've later met who work there said they weren't surprised by the unresponsiveness after an MI. They also lost their Medicare license for 4 months last year?! How does a hospital like that make this list?!
It sucks when you can't trust is all that I can say. Something is clearly wrong with the nursing shortage and lack of communication between ER, doctors and nurses.
KK
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