So Frustrated with Doctors (Vent)

[LoraJ]

So my BF's dad has been in the hospital since last Monday.
He had colostamy bags put in back in March when his colon ruptured and they discovered a tumor in his colon. A few weeks ago, he started becoming nausueous 24/7 and had problems keeping food down. We kept trying to get him to go to the hospital. He finally agreed when he became so weak he couldn't get out of bed. But then he ended up calling an ambulance which took him to a hospital he hasn't been to before (this was my debacle last week).

Last week, he really liked that hospital. Everyone was really nice and they seemed to be doing a good job of figuring out what was going on. It seems as though the problem he was having was with the colostamy bags. Something with the way that they were put in taht they weren't draining properly and he'd have sitting in his stomach for weeks.

My BF was told by the nurse last week that his dad would be having surgery on Monday or Tuesday to look and see what was going on.

I'm not sure what happened, but no one ever told us, including his dad when exactly he was having this surgery. They suddenly took him to prep him Monday afternoon. No one had informed my BF about anything. And apparently he was supposed to have a bunch of tests done before he had this surgery. Not sure what exactly happened, but BF's dad made them stop the surgery.

Since then it has been nothing but confusion. His dad doesn't know what's going on and neither does my BF. Since Monday, my BF has requested at the nurse station for the doctor to call him. He hasn't. We got his name and number and have been leaving messages for him to call but he hasn't.

This is so frustrating. It's possible the doctors are explaining everything to his dad, but he's so medicated, he never remembers anything they say. So he wants his son to find everything out. Why can't the doctors call him?

His dad just called BF up and said he just doesn't know what's going on and he just feels like dying now.

My boyfriend called the doctors office again and they don't open until 1pm. I swear I am physically going to go over there at 1pm and demand he calls my BF. I just don't know what to do.

We had the same problem with his dad's last doctor. She needed to send a medical report to disability and she would never return our calls, or disabilities calls.

And the last time he was in the hospital his gastro doctor would never return my BF's calls.

We've also been trying to find out if his oncological surgeon has been in touch with these doctors at this hospital. But no one will tell my BF anything.

What is up with that? Why can't the doctor return my BF's calls. He is on all of his dad's signed papers to release medical info to. I don't understand what the problem is. Why so much lack in communication.

I don't know what to do? Should I get a hospital advocate involved? Last time I tried that at the last hospital he was at and she never returned my calls either!

Ugh! This is so frustrating. Just when I was getting my faith back in the healthcare system again.

 

[Christine]

So my BF's dad has been in the hospital since last Monday.
He had colostamy bags put in back in March when his colon ruptured and they discovered a tumor in his colon. A few weeks ago, he started becoming nausueous 24/7 and had problems keeping food down. We kept trying to get him to go to the hospital. He finally agreed when he became so weak he couldn't get out of bed. But then he ended up calling an ambulance which took him to a hospital he hasn't been to before (this was my debacle last week).

Last week, he really liked that hospital. Everyone was really nice and they seemed to be doing a good job of figuring out what was going on. It seems as though the problem he was having was with the colostamy bags. Something with the way that they were put in taht they weren't draining properly and he'd have sitting in his stomach for weeks.

My BF was told by the nurse last week that his dad would be having surgery on Monday or Tuesday to look and see what was going on.

I'm not sure what happened, but no one ever told us, including his dad when exactly he was having this surgery. They suddenly took him to prep him Monday afternoon. No one had informed my BF about anything. And apparently he was supposed to have a bunch of tests done before he had this surgery. Not sure what exactly happened, but BF's dad made them stop the surgery.

Since then it has been nothing but confusion. His dad doesn't know what's going on and neither does my BF. Since Monday, my BF has requested at the nurse station for the doctor to call him. He hasn't. We got his name and number and have been leaving messages for him to call but he hasn't.

This is so frustrating. It's possible the doctors are explaining everything to his dad, but he's so medicated, he never remembers anything they say. So he wants his son to find everything out. Why can't the doctors call him?

His dad just called BF up and said he just doesn't know what's going on and he just feels like dying now.

My boyfriend called the doctors office again and they don't open until 1pm. I swear I am physically going to go over there at 1pm and demand he calls my BF. I just don't know what to do.

We had the same problem with his dad's last doctor. She needed to send a medical report to disability and she would never return our calls, or disabilities calls.

And the last time he was in the hospital his gastro doctor would never return my BF's calls.

We've also been trying to find out if his oncological surgeon has been in touch with these doctors at this hospital. But no one will tell my BF anything.

What is up with that? Why can't the doctor return my BF's calls. He is on all of his dad's signed papers to release medical info to. I don't understand what the problem is. Why so much lack in communication.

I don't know what to do? Should I get a hospital advocate involved? Last time I tried that at the last hospital he was at and she never returned my calls either!

Ugh! This is so frustrating. Just when I was getting my faith back in the healthcare system again.

Is there a nurse there that you could work with? When my son was in the hospital, we found that the nurses (or maybe one or two specifically) were really our best resource. They know all the doctors and generally know when they will be at the hospital. They also know how to get in touch with them.

I know that you have your own jobs that you must maintain, but it really, really sounds as if someone needs to be there with your BF's dad when the doctor makes his rounds. It is obvious that your dad cannot be counted on to remember what is being told to him. I do find it hard to believe that this is the doctor's fault unless you are in some area where the medical care is so subpar that this stuff can go on.

Whenever we've had elderly or very sick family members in the hospital, we have always made sure that someone is there when the doctor is expected.

I've been reading your problems with all this and know that you are doing your best and that this is probably impossible for you to do (I know you've got to both hold down jobs). I'm just wondering if someone can appoint a guardian or advocate to your father while he is in the hospital.

 

[LoraJ]

I called the hospital advocate and hoping he'll return my call.

My boyfriend is hopefully getting out of work early today and will go straight to the hospital.

It stinks that he has no other family around here. His dad doesn't want him taking off work because he is freelance and missing too much works means not getting paid and my BF has been shelling out $4000 a month to support his dad since he's been in the hospital plus he has his own expenses. Ugh!

I feel so helpless right now.

 

[momof2inPA]

Are they allowed to release info to your boyfriend? Is there a HIPPA problem?

 

[Christine]

Lora,

I have been following your 'trevails' regarding your BFs father and I really feel for you.

So, do you think that this is all due to him not having insurance? I guess what I'm not understanding is why the man does not have the ONE doctor that is overseeing his care. I know there have been a few mix-ups with regards to being in different hospitals, but it just seems like he does not have the one "caretaker" doctor that he needs--the one supervising his treatment. Why has that not happened? It just seems that if you could get him under the care of someone that a lot of this confusion would go away.

 

[LoraJ]

Apparently the doctor we're trying to call IS his general care doctor assigned at this hospital. My boyfriend has tried getting info from the nurses but they haven't given much info since last week. And they also said they don't know why the doctor is not calling.

Yeah, I wonder if it is because of his lack of insurance. I feel like saying to them, look if you want to get paid, get him better so that he can get his life together and get back to work so he can pay you. UgH!

momof2,
He had signed a bunch of forms saying they can release info to my BF. I think I will make some more of those forms up today and add my name to them because where my BF works, he can't always be reached.

Thanks for the advice and letting me vent. My head is spinning right now.

 

[catherine]

Can your DBF request to look his dad's medical records? I don't know how that works in the US, but over here he could request to look at them. If he could have a look at those then that would give DBF a clearer picture of what is going on with his dad's healthcare.

I think it stinks if patients get mediocre healthcare just because they don't have insurance! What's all that about!!

 

[Maleficent13]

I just want to say that I work in healthcare and have for many years. I have absolutely never not given a patient or their family info because they did not have insurance. The docs I worked for never even knew if their patients had insurance or not; they left all that to their staff. So I really, really doubt the OP's issue is insurance related.

It sounds to me like the dad is not really this doc's patient...the doc was just "assigned" to him when he arrived at this hospital. Wrong or not, this doc probably has dozens of his own patients plus what the hospital assigns him. I am almost sure he is not ignoring this patient on purpose; he may just be getting lost in the cracks, especially since he is disoriented.

 

[LoraJ]

I just want to say that I work in healthcare and have for many years. I have absolutely never not given a patient or their family info because they did not have insurance. The docs I worked for never even knew if their patients had insurance or not; they left all that to their staff. So I really, really doubt the OP's issue is insurance related.

It sounds to me like the dad is not really this doc's patient...the doc was just "assigned" to him when he arrived at this hospital. Wrong or not, this doc probably has dozens of his own patients plus what the hospital assigns him. I am almost sure he is not ignoring this patient on purpose; he may just be getting lost in the cracks, especially since he is disoriented.

Assigned or not, doesn't that still mean that he's this doctors patient? Shouldn't he care enough to inform family members of what is going on with the patient, especially if the patient is disoriented?

 

[Christine]

I just want to say that I work in healthcare and have for many years. I have absolutely never not given a patient or their family info because they did not have insurance. The docs I worked for never even knew if their patients had insurance or not; they left all that to their staff. So I really, really doubt the OP's issue is insurance related.

It sounds to me like the dad is not really this doc's patient...the doc was just "assigned" to him when he arrived at this hospital. Wrong or not, this doc probably has dozens of his own patients plus what the hospital assigns him. I am almost sure he is not ignoring this patient on purpose; he may just be getting lost in the cracks, especially since he is disoriented.

Mal,

When I said that I was wondering if this was all going on because the father did not have insurance, I meant that in regards to his care, not the lack of info.

From the beginning of this whole ordeal, it seems as though NO ONE wants to take responsibility for this man. It appears from Lora's posts, that he doesn't really have a doctor who is actively overseeing all aspects of his treatment. There is a doctor assigned, but it seems that DAYS go by before he is checked up on. I don't know about your experience, but in mine, whenever someone has been hospitalized they are usually visited once a day by the doctor when he does his rounds.

I just feel that this man is receiving substandard care. I can't tell if it is because he is uninsured or if he is not actively pursuing his own care. I do know that the patient and their families MUST be the advocate and push for proper care and attention.

 

[LoraJ]

I'm off to pick up my BF from work now.
Going to take him to the hospital and hopefully we'll be able to get some info. I'll also try and find the advocate in person since he hasn't returned my calls yet. Wonder if he's away due to the holidays? We'll also try and find the social worker. Hopefully we can light a fire under this. And hopefully his dad won't give DBF grief for leaving work early. He is more important.

 

[Maleficent13]

Christine, I agree with you. He is having difficulties; I just doubt it's due to his insurance status.

Yes, regardless of how this doc "got" him, he is responsible for him. HOWEVER, if there is no documented mental disability which mandates that the doc speak with someone other than the patient regarding care, then the doc doesn't have to. I admit I haven't followed the saga and I don't know, but I am assuming that your BF does not have to give permission for treatment...his dad is still capable of assent or dissent?

Should the doc have the courtesy to speak to your BF? Yes, absolutely. I just don't have enough information to know if he is required to speak to him.

 

[sugarpie]

I also work in healthcare and I have to say that the problem is not that he's uninsured. I'm a nurse and I get that all the time. I don't always know a patients financial circumstances.

I think you need to talk to a social worker/patient advocate. Your BF's father doesn't sound like he's able to make his own medical decisions at this time. Is there a Healthcare Power of Attorney in place? Maybe your BF needs to be in charge of his fathers medical care at this point. If your BF was the POA contact he would be receiving this info directly from the doctors & nurses. As far as the confidentiallity of this info I think they should be sharing it with your BF if his father o.k.'s it.

The doctor situation - yeah, it is a mess when you've got multiple doctors. You need the specialists, though.

 

[Disney Doll]

I can give you some info and make some educated guesses.

First of all, chances are that the doctor has no idea what kind of insurance your DBF's DF (heretofore known as DFIL for ease of typing)has. Their office staff handles that usually. And the floor nurses have no idea, because that info isn't usually even part of the chart anymore. And even if it is, a nurse doesn't base her care of the patient on insurance or lack thereof...that part of the equation it isn't our issue.

If I recall, your DFIL was somewhat reluctant to go into the hospital until he basically got so bad that he had to.
And he ended up in a hospital where his primary oncology doctor did not have priveleges (was not allowed to write orders and direct care there). So, chances are he ended up with what we call (in my hospital) a general service doctor...a doctor that gets assigned to the patient because the patient has no doctor who can care for him in that facility.

Suggestions:
1. Get a hold of your DFIL's oncology doctor and tell him what is going on. Perhaps he has a colleague in the hospital who can oversee DFIL's care, would be able to consult with him, and therefore he would know what was going on.
2. Get a hold of the nurse manager, unit manager, supervisor, head nurse...whatever they call the boss of the unit where DFIL is...and tell her your difficulties. The nurse manager has a vested interest in your DFIL's well-being, because he/she will have to answer any questions about any difficulties that arise. These are the concerns you will want to share, and you will want to use the wording I have provided:
~your concerns about DBF(pt's next of kin)not having any contact with the doctors
~the confusion about the surgery
~the fact that your DFIL, an elderly confused patient, is the only person being told what is going on, when his son is listed as someone who may also be told about DFIL's status....this is a lack of communication
~you are concerned about the quality of care, and your DFIL's safety as a patient due to aforementioned lack of communication
~you are concerned that this is becoming a Risk Management issue, because it seems to you, his family, that the right hand doesn't seem to know what the left hand is doing with regard to DFIL's care.
~your concerns about the fact that DFIL is receiving substandard care due to his lack of insurance.
~ask the nurse manager to arrange care meeting that will include you guys, the primary doc, the social worker, the nurse manager, the surgeon, and to let you know when it will be
~that you would like the social worker to make application for your DFIL for Medicaid, and to look into any other possible government programs he may be eligible for, such as veterans benefits etc.

The "buzzwords" here that will get their attention are quality of care, patient safety, Risk Management and insurance (or lack thereof) discrimination. They will begin to think that you are thinking legal action. Even if you aren't, you guys sound as if you have been jerked around enough so that it won't hurt to have everyone a bit more on their toes for fear of being sued. It works...take my word for it.

When you go to the family meeting, go armed with your list of questions about his physical care and his insurance issues. Address the physical care questions to the doctors and the nurse manager. Address the insurance application questions to the social worker and the nurse manager.
Get everyone on the same page. Repeat what others say to you...for example "So Dr.Smith, what you are saying is that Dad's surgery will be scheduled for next Tuesday and that on Monday he will have to a prep which will consist of an enema and a suppository". Take otes in the meeting, or bring a trusted friend or relative to take notes. Or, for that matter, ask if it is OK to tape record it so you can refer to the tape later for review.

Good luck!!!

 

[LoraJ]

Disney Doll,
thanks so much for all of that advice. Hopefully there will be someone who can help us tomorrow. We were just at the hospital and didn't make much headway. I am actually starting to get the feeling that the doctor may be communicating to his dad about what is going on, but his dad can't understand the doctors accent. The doctor did finally see him today and he insisted that he call my BF, so hopefully he will. We're about to call the doctors office now. We asked his dad what was going on and he said he didn't have the energy to talk about it and just to call the doctor. Ugh!

Hopefully we will know more tonight.

I have a ton of forms that I printed out for his dad to sign giving DBF power of attorney, his living will and regular will. But they haven't been signed yet. But that's a whole 'nother issue. His nurses have forms in his file stating that my DBF is the contact person, but no one ever calls.


Sugarpie,
The patient advocate hasn't returned my calls. I think I need an advocate for the advocate.

 

[froglady]

I have a ton of forms that I printed out for his dad to sign giving DBF power of attorney, his living will and regular will. But they haven't been signed yet. But that's a whole 'nother issue. His nurses have forms in his file stating that my DBF is the contact person, but no one ever calls.

That's the problem. Without the POA, Health Care Designation, etc your BF will probably only be contacted in the case of an emergency. As long as DFIL appears competent, and has not been declared legally incompetent, he'll be treated as a fully, functioning adult capable of making his own decisions.

I went through this with my parents, and I (and their doctors) had to walk a very fine line. PLUS, I was only a mile from the hospital, and was able to be there at any time. I STILL had difficulty meeting with the various doctors, and ended up talking on the phone with some of them.

This was with legally executed POA, Health Care powers, etc. I can just imagine the difficulties you're having.

And as Disney Doll mentioned, he's at a "new" hospital where they don't "know" him. It makes a HUGE difference in continuity of care when patients start switching doctors, hospitals, etc.

 

[Disney Doll]

That's why the inclusion of the unit's nurse manager is imperative.

 

[LoraJ]

Well, the doctor finally called DBF. But, my boyfriend couldn't really understand what he was saying. When he would try and repeat it back to the doctor to make sure he was understanding correctly the doctor would say "yes, have a good weekend" and DBF would have more questions but he would just blow him off. Ugh!

Anyway, it sounds like the doctor wants to send his dad home to get stronger. Not sure how that's possible because he's still not able to keep anything down. From what DBF was saying, I think the doctor wants him to get a 24 hour nurse service or something like that. I don't know how he can afford that. He can afford a home health aid, but not a nurse.


About POA,
On all of the NJ forms I am looking up, none seem to include medical info. Just insurance, medicaid, etc. I am trying to find a good HIPAA Waiver form online or something like that, for him to sign.

I can't thank you guys enough for all of your help. I feel so clueless with this since it's the first time I've ever had to deal with something of this nature.