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Old 01-08-2019, 02:11 AM
 
Location: colorado springs, CO
4,307 posts, read 1,944,145 times
Reputation: 14914

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Quote:
Originally Posted by AndCatsForAll View Post
I realize that as a person who is 40-something with parents in their mid-seventies that I need to be my parents' advocates when they are hospitalized. Everyone says you need to be their advocate and I have issues with that- but that's for another topic.

I'm trying to prepare myself so I can handle situations with more information later because it's becoming relevant and it's daunting and I used to feel that people were well-cared for in hospitals but over the last few years my father's instances of being hospitalized and my friends parents have been hospitalized and had parents die- I'm just confused...I'm not able to help my friends and feel very ill-prepared for the next years.

My father was hospitalized last year and his experience was so bad I fear he would rather die at home without calling for help than go back. Last year he had a few falls and was hospitalized. He was held and rarely seen by anyone other than a nurse for two weeks. When he went in his neurologist came in within a few days (for his one day a week round at the hospital) and told whomever at the hospital that due to my father's idiopathic shaking that he could not possibly stay still enough for a CT scan. The hospital repeatedly attempted CT scans and they berated him for not staying still.
The neurologist only rounded once a week? In an acute care facility (hospital) doctors are supposed to round once every 24 hours. In order to receive pre-scan sedation, a doctor needs to write that as an order in the chart. Most radiology departments have RNs who can administer sedation but I've been called & left the floor for a few minutes to administer sedation to a patient in radiology when they were running behind.

As long as the order is there; it's do-able.

Quote:
Originally Posted by AndCatsForAll View Post
He was billed of course for each one and yes he had good medical coverage as he worked in "yesteryear" when companies provided decent health coverage for retirees but the way the hospital staff spoke to him was unacceptable. He is physically incapable of staying still. Eventually in the second week they gave him a sedative that slowed his movements and they were able to get some images after a few tries- yes a few- 3 tries. But why did it take that much? Why wasn't' the neurologist's word enough for them to administer the sedative from the get-go?
No. There HAS to be an order. That being said; an RN can take an order over the phone from a doctor & that includes the Radiology RNs as well as his floor nurse.

Quote:
Originally Posted by AndCatsForAll View Post
His regular GP as well as his regular neurologists and his other specialists were in contact and recommending sedation? They did a CT scan multiple times without sedative and each time he was berated for not being able to be still- something completely out of his control. How awful it must be to be yelled at over something your body is doing through no control of one's own.
I agree; that would be awful.

Quote:
Originally Posted by AndCatsForAll View Post
Meanwhile each day he had shots in the stomach to reduce his chance of stroking out because he wasn't walking- no one even tried to walk him. This will become relevant later. Two weeks and the most he walked was from the bed to the toilet aided by a nurse.
Sounds like he was on Heparin or Lovenox. They are anti-coagulants or "blood-thinners" & they do help to prevent DVT's & strokes. If he was shaking & admitted for falls, he was likely considered a high fall-risk & nursing would have had him on his feet very minimally. I'm surprised he wasn't ordered PT for strengthening. He would require a minimum of 2 people to safely walk him, as a high fall risk. Even to the bathroom.

Quote:
Originally Posted by AndCatsForAll View Post
So fast forward a year later to a hospital one state away. My friend's mother went into the hospital and while she was there she had a stroke. She mentioned how all of sudden she couldn't see to several workers and nothing was done. She was released. No one checked her for stroke even though she was trying to tell staff that there was something wrong. No one listened and it was all someone else's responsibility. She never had any anti-stroke medications. She's in her 90's and she was bedridden. Why did my dad get anti-stroke shots while she did not? She was at higher risk of stroke and a good 20 years older than my dad.
Just because she wasn't getting the shots doesn't mean she didn't get any blood-thinners. Both Heparin & Lovenox are given as shots in the abdomen but Heparin can also be given through an IV (not Lovenox). Sometimes, a doctor will order an oral blood-thinner. A pill. Such as Coumadin or Warfarin.

Quote:
Originally Posted by AndCatsForAll View Post
And now the same friend's partner has been hospitalized for some autoimmune disease. Apparently he's been in for a few weeks and was sent to rehab while his meds still hadn't been worked out and he couldn't walk. The PT says no way he is up to walking and he is not ready to be in rehab. Weeks later after pestering the admitting doctor my friend gets a message back from the admitting doctor that he's very seriously ill with liver cirrhosis. No one has told the patient. The patient has no idea how poor his prognosis is. He has no idea how serious his condition is. The admitting doctor says he's a kidney specialist who was just doing rounds at the time of admittance but that my friend's husband needs a liver specialist- through message weeks later. WTF? Why didn't anyone say anything sooner?????? Like a month ago?????
Rehabs are notorious for miscommunication with doctors. I would almost consider getting a discharge from Rehab & going straight back to the hospital via the ER to get that straightened out. I think (don't quote me on this one) that as long as he stays for three days in the hospital there won't be extra costs involved, when & if he requires Rehab at some point. Other posters may be better informed.

Quote:
Originally Posted by AndCatsForAll View Post
I just don't get it. I really don't understand. I used to view hospitals as being places to get emergency medical care but it really seems like no one takes time to speak to the patient or the patient's family and information is withheld to the great detriment of the health of the patient especially when they are considered older.

Going back to my dad- the nurses told me that he needed to go into a home (off the record). That he did not have the mental acuity to live on his own. Turns out that he was just in so much pain that he couldn't think. After he got in-home PT (which was wonderful for him) he regained functionality. Once his pain lessened and he was out of the hospital he was able to think clearly and his doctors say there is no issue with his acuity.
It's a mess, isn't it? I'm an RN from a family of doctors & found it interesting that my grandfather had told my dad & his 5 siblings that he was actually relieved that none of them had continued the tradition of becoming doctors. He said the medical field was changing rapidly & that it wasn't headed in the right direction.

Quote:
Originally Posted by AndCatsForAll View Post
So how does someone with an average intelligence and average strength of character deal with this? How do people talk to and get valuable information from hospital staff (doctors, nurses, specialists, the grand poohbah- whatever) in a timely fashion? Is there a book I should read? Do I need to go into nursing to understand this?

I just feel completely useless and I look to my parents to navigate but they can't because the system has changed. The doctors don't visit the patients daily, when they do they are there for 5 minutes and just read the chart and talk to nurses. There is no patient/ doctor interaction of any value and it's all so disheartening.
You can lie in wait & ambush the doctors, who really are supposed to round every 24 hours. But a HIPAA Waiver or Release form that is signed by your parent prior to admission would be helpful. The hospital admitting department should have them but there are generic forms available online:

https://www.elderlawanswers.com/use-...out-you--15184

https://www.americanbar.org/content/...thcheckdam.pdf

State &/or facility policies may apply, so it would be good to know what your area's process is.
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Old 01-08-2019, 07:08 AM
 
2,503 posts, read 854,248 times
Reputation: 3325
File complaints with the licensing agencies against the hospital and any staff that behaved improperly. Even if nothing comes of it, their having to respond to the complaints will serve as a reminder that patients are real people who need to be appropriately cared for.
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Old 01-08-2019, 11:09 AM
 
Location: Loudon, TN
5,152 posts, read 4,411,321 times
Reputation: 17227
Yes, you do need to become your parents' (or other relative's, spouse's, child's) advocate. Be sure to have them assign you as their healthcare proxy using the appropriate form and make a zillion copies. Bring one or more to the hospital and make sure it's put in their chart. Ask, and write down, every medication they are receiving, what it's for, and how often they are giving it. Ask what every test is for. Ask what the diagnosis is, what the treatment plan is, how long they think they will need to be in hospital, and what the possible or expected outcomes/side effects are for any treatment, surgery, etc. You need to educate yourself about whatever conditions your parents have, and pay attention to their ability to handle the prescribed treatments and therapies. As parents age, their memory issues, and sometimes inaccurate beliefs/ideas, can prevent appropriate communication with healthcare professionals. If you have average intelligence, etc, as you state, then you are capable, but you must make the commitment to do all that you can. The nurses are often overworked, the doctors have little time, so you must make sure that they are getting the most accurate information from the patient, and asking questions to make sure you, and your parent, understand what's going on and why.

My mom was in the hospital 13 times in her last 3 years of life, sometimes for weeks on end, and I went every day to check on her. I got her doctors' cards and if I couldn't catch them on the ward, I would call them to discuss things as necessary. The hospital staff got to know me, and to expect that I would be there to check on everything, and that I needed to be fully informed.
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Old 01-08-2019, 11:43 AM
Status: "waiting for God," I am female" (set 4 days ago)
 
Location: Northern panhandle WV
2,686 posts, read 1,912,154 times
Reputation: 5627
All hospitals should have a patient's bill of rights that you can ask for, and usually a patient advocate. ALSO and this is important you want your father to appoint you as his Health Care Proxy. If you don't have that then the medical personnel is not going to tell you anything.
With it you can insist on being informed.
I have found that hospitals can help save your life in emergencies but otherwise they can be very dangerous places.
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Old 01-08-2019, 11:54 AM
 
Location: Southern California
20,594 posts, read 6,868,580 times
Reputation: 13879
Reading OP's post, the first paragraph tells something that they may not want to be parents advocate...is everyone missing that comment. I know my daughter isn't excited about being an advocate in my healthcare as I'm aging.
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Old 01-08-2019, 12:50 PM
 
1,538 posts, read 1,447,122 times
Reputation: 2067
Quote:
Originally Posted by jaminhealth View Post
Reading OP's post, the first paragraph tells something that they may not want to be parents advocate...is everyone missing that comment. I know my daughter isn't excited about being an advocate in my healthcare as I'm aging.
My mother and I share medical proxy for my grandmother. It's a daunting challenge to be the proxy when you have little medical knowledge.



My mother is absolutely terrified at the thought that she is making a "wrong" decision due to her limited understanding. Thankfully, I work for several doctors and we have the ability to get clarification for things we don't understand.
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Old 01-08-2019, 12:56 PM
 
Location: Southern California
20,594 posts, read 6,868,580 times
Reputation: 13879
It's a huge responsibility on another person to be an advocate and most have their own lives and own health to deal with. My daughter has some health issues and doesn't need mine.
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Old 01-08-2019, 03:50 PM
 
2,450 posts, read 909,088 times
Reputation: 4680
Quote:
Originally Posted by AndCatsForAll View Post
I realize that as a person who is 40-something with parents in their mid-seventies that I need to be my parents' advocates when they are hospitalized. Everyone says you need to be their advocate and I have issues with that- but that's for another topic.

I'm trying to prepare myself so I can handle situations with more information later because it's becoming relevant and it's daunting and I used to feel that people were well-cared for in hospitals but over the last few years my father's instances of being hospitalized and my friends parents have been hospitalized and had parents die- I'm just confused...I'm not able to help my friends and feel very ill-prepared for the next years.

My father was hospitalized last year and his experience was so bad I fear he would rather die at home without calling for help than go back. Last year he had a few falls and was hospitalized. He was held and rarely seen by anyone other than a nurse for two weeks. When he went in his neurologist came in within a few days (for his one day a week round at the hospital) and told whomever at the hospital that due to my father's idiopathic shaking that he could not possibly stay still enough for a CT scan. The hospital repeatedly attempted CT scans and they berated him for not staying still.

He was billed of course for each one and yes he had good medical coverage as he worked in "yesteryear" when companies provided decent health coverage for retirees but the way the hospital staff spoke to him was unacceptable. He is physically incapable of staying still. Eventually in the second week they gave him a sedative that slowed his movements and they were able to get some images after a few tries- yes a few- 3 tries. But why did it take that much? Why wasn't' the neurologist's word enough for them to administer the sedative from the get-go? His regular GP as well as his regular neurologists and his other specialists were in contact and recommending sedation? They did a CT scan multiple times without sedative and each time he was berated for not being able to be still- something completely out of his control. How awful it must be to be yelled at over something your body is doing through no control of one's own.

Meanwhile each day he had shots in the stomach to reduce his chance of stroking out because he wasn't walking- no one even tried to walk him. This will become relevant later. Two weeks and the most he walked was from the bed to the toilet aided by a nurse.

So fast forward a year later to a hospital one state away. My friend's mother went into the hospital and while she was there she had a stroke. She mentioned how all of sudden she couldn't see to several workers and nothing was done. She was released. No one checked her for stroke even though she was trying to tell staff that there was something wrong. No one listened and it was all someone else's responsibility. She never had any anti-stroke medications. She's in her 90's and she was bedridden. Why did my dad get anti-stroke shots while she did not? She was at higher risk of stroke and a good 20 years older than my dad.

And now the same friend's partner has been hospitalized for some autoimmune disease. Apparently he's been in for a few weeks and was sent to rehab while his meds still hadn't been worked out and he couldn't walk. The PT says no way he is up to walking and he is not ready to be in rehab. Weeks later after pestering the admitting doctor my friend gets a message back from the admitting doctor that he's very seriously ill with liver cirrhosis. No one has told the patient. The patient has no idea how poor his prognosis is. He has no idea how serious his condition is. The admitting doctor says he's a kidney specialist who was just doing rounds at the time of admittance but that my friend's husband needs a liver specialist- through message weeks later. WTF? Why didn't anyone say anything sooner?????? Like a month ago?????

I just don't get it. I really don't understand. I used to view hospitals as being places to get emergency medical care but it really seems like no one takes time to speak to the patient or the patient's family and information is withheld to the great detriment of the health of the patient especially when they are considered older.

Going back to my dad- the nurses told me that he needed to go into a home (off the record). That he did not have the mental acuity to live on his own. Turns out that he was just in so much pain that he couldn't think. After he got in-home PT (which was wonderful for him) he regained functionality. Once his pain lessened and he was out of the hospital he was able to think clearly and his doctors say there is no issue with his acuity.

So how does someone with an average intelligence and average strength of character deal with this? How do people talk to and get valuable information from hospital staff (doctors, nurses, specialists, the grand poohbah- whatever) in a timely fashion? Is there a book I should read? Do I need to go into nursing to understand this?

I just feel completely useless and I look to my parents to navigate but they can't because the system has changed. The doctors don't visit the patients daily, when they do they are there for 5 minutes and just read the chart and talk to nurses. There is no patient/ doctor interaction of any value and it's all so disheartening.

This is a perfect argument for the benefit of having a family doctor. This doctor will have a hospital they work with and will be in charge of your patient, responsible for treatment and prognosis, and daily visits monitoring progress.

It is also a perfect argument to be the legal guardian and enduring POA for your parents. You have control to act legally on their behalf with hospital authorities not being "just" a family member.

Your parents are too old to manage the system themselves. Realize that at their age some hospitals and physicians don't see any reason to prolong their lives. It's sad but true.

There are books I am sure. Check out caregiving topics. Get involved with a caregivers support group. You will learn the ropes.
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Old 01-08-2019, 06:24 PM
 
1,550 posts, read 553,448 times
Reputation: 2917
"So how does someone with an average intelligence and average strength of character deal with this?"

1. history: my wife and i are the only ones responsible for her parents' medical options.
we are also part of the plan for my mother's care (father died 21 years ago).

2. what is your history?: where, exactly, are you? yes, this makes a difference. it made a big
difference between my wife's parents and mine. how many children are willing to help or not?
yes, it is all about the excruciating details. we found out 5 minutes/5 words make an impact.

3. finally, we might be able to provide some possibilities when the above are specified.
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Old 01-08-2019, 08:29 PM
 
Location: Dallas TX
14,595 posts, read 20,959,213 times
Reputation: 21005
Doctors are required to go through a series of tests before they can give you something you probably need.

For example I hurt my shoulder. I had to go to my ortho and have her examine it. She then took an X-ray, saw nothing wrong. Sent me to PT. Months later I am no better and will go for an MRI. They simply canít give you the more expensive test first. Thatís healthcare, following protocol.

If you feel something is wrong you must advocate for yourself. Unfortunately todayís doctors are not afforded the time it takes to make sure you get the care you need.
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