Rant: I have a bone to pick with patient privacy laws (HIPPA) and power of decision

[The Stigenator]

So my brother is in a hospital right now in ICU. It's a rare condition that had him have a heart attack at 39 complicated with acute failure of organs and a stroke ( while being in the hospital ) However as of tonight his kidney functions are returning.

My gripe is I the brother who is the only person here from immediate family besides his wife and I can't make a decision since I have no rights. His wife does and so far she hasnt been talking to family, doctors ( well she talked to them day before but was too distraut to tell me the issue so i had to ask questions later)or anybody. Not sure how much she understands / comprehends it. I've been doing all the informing and what not aunts and cousins are helping, mom and dad are flying back to the us)

So the issue I have is this is a rare case we ( including doctors in the family) feel he would be better at UCLA or cedar sinai. The care here is fine he is recovering but the complexity of a heart attack and stroke and acute failure of organs is rare. We feel a better hospital would serve us better.

I've put the seed in her head. My cousins have dropped the hint but we can't do jack crap.

Ugh!!!

 

[Powermoloch]

My thoughts and prayers for your brother. Hold it together !

 

[silverpig]

Just outright tell her. "Your cousins and I have spoken to the doctors and they tell us that they feel he would be better served at <whatever hospital>. This is because his condition is so rare that they just aren't as well equipped to deal with complications. They will move him, but need your okay to do so."

 

[The Stigenator]

Well she knows it. Problem is she is incapable of handling it so not sure if will tell the doctors.

I guess I'll be blunt with her later today if she doesnt start. Xmas is coming I rather start the paperwork now and move him before 24th
Mom and dad arrive 24rh morning.

 

[grohl]

sorry to hear that man. Hang in there.

 

[Fear No Evil]

Not sure why you would think you would have rights here. You going to pay the bills associated with moving him/caring for him? Your situation sucks but I don't see why they would allow you to make decisions. If the wife is truly incapable of making decisions about his care then go to a judge and try to get legal rights.

Best of luck to you and your family though.

 

[JimKiler]

Not sure why you would think you would have rights here. You going to pay the bills associated with moving him/caring for him? Your situation sucks but I don't see why they would allow you to make decisions. If the wife is truly incapable of making decisions about his care then go to a judge and try to get legal rights.

Best of luck to you and your family though.

Agreed, my living will and power of attorney go to my wife so my sisters would not have any say in it unless my wife is also incapable of decision making.

As you gripe about this, how does your family know who should be in charge if the same thing happens to you? Are you prepared and covered?

 

[Pliablemoose]

HIPPA didn't change who the decision maker is, it's been like that for some time due to case law.

Best thing is to be supportive as you can with the wife, and try to work with her, her world is falling apart.

If the docs are convinced a different hospital would be better, they'd try to convince her more agressively.

Am very sorry to hear about your brother.

I sent you a PM... I work in one of the larger LA hospitals. If he's in my hospital, I'll meet up with you and grab a coffee or something...

 

[skyking]

HIPPA didn't change who the decision maker is, it's been like that for some time due to case law.

Best thing is to be supportive as you can with the wife, and try to work with her, her world is falling apart.

If the docs are convinced a different hospital would be better, they'd try to convince her more agressively.

Am very sorry to hear about your brother.

I sent you a PM... I work in one of the larger LA hospitals.

Exactly this.
Hang in there OP. Best of luck to you and your family.

 

[The Stigenator]

Pilablemoose ygbkm. He is now in a small community hospital with a good burn center. You know which one I'm talking about.

The doctors in our family are from a neurosurgeon to a ob/gyn to an ER doc to the psychiatrist.

Proving her incapable is going interesting. Hope she reasons over it.

I am taking all into consideration.

My issue with HIPPA is that the complexities of this case and her not asking the questions means we had to have my obgyn cousin do the talking to the doctor. Now that we found out the stoke it's out of her league and the neurosurgeon has a lot of QA and we can only put one person on that list.

Anyway we shall try solve that tonight. My neurosurgeon cousin has only seen a handful of this cases.
Ugh... I make critical decisions at work and I'm powerless here and so are other people in the family

 

[ShawnD1]

Not sure why you would think you would have rights here. You going to pay the bills associated with moving him/caring for him? Your situation sucks but I don't see why they would allow you to make decisions. If the wife is truly incapable of making decisions about his care then go to a judge and try to get legal rights.

Best of luck to you and your family though.

Indeed, this. Sometimes people have crazy ass families too. Suppose your wife is dying and she needs a blood transfusion. You say go ahead. Oooh not so fast, her crazy ass family has a problem with blood transfusions and they insist you let her die.

It goes both ways. Sometimes the spouse is the crazy one. Sometimes the relatives are crazy.

 

[The Stigenator]

Yea I know that one. Friend is a JV. That was interesting the last time his wife went to give birth and there were complications to the procedure o. Top of religious views. It was a mess.

He let them do it despite faith telling him no

 

[Pliablemoose]

Yeah, he should be moved, and you-all need to think about where he'll rehab if he survives.

Docs are funny like that, they can get conflicted about transfers. You need an aggressive teaching hospital.

What part of the brain infarcted?

 

[vi edit]

Yea I know that one. Friend is a JV. That was interesting the last time his wife went to give birth and there were complications to the procedure o. Top of religious views. It was a mess.

JV's usually end up getting a synthetic that's about 10x more expensive than whole blood.

As for the situation, it sucks. I'm sorry. Instead of whitling away on the spouse, can you corner the attending in private and push them for a transfer. Then have them bring the option to the wife? That way you are out of the picture and it's coming from a medical professional?

For others reading, now would be a good time to consider a medical power of attorney. You want somebody neutral, and comfortable with making medical decisions.

 

[The Stigenator]

Went to breakfast with her. Had her eat then talked about it. She got emotional and can't think straight and I had to stop. However I did tell her the concerns. Stated why we need to move him etc etc

I also told her all doctors in the family are on board on this issue. She then asked why wasn't she told. I told her cause you aren't talking to anybody. This is the first time I saw reality set in and she got scared!

I told her if she is incapable of decisions she must tell the doctors that she cannot make decisions and pass it on to me.

I laid it out clearly. Staffing issues, not enough communication , not a major hospital , unique case , risk, after hospital care etc.

God help us. I hate this rule since otherwise a person like me who is rational will have made a decision. On the flip side I have the option of taking. To the attending physician and have him bring it up to her to transfer.

 

[The Stigenator]

Went to breakfast with her. Had her eat then talked about it. She got emotional and can't think straight and I had to stop. However I did tell her the concerns. Stated why we need to move him etc etc

I also told her all doctors in the family are on board on this issue. She then asked why wasn't she told. I told her cause you aren't talking to anybody. This is the first time I saw reality set in and she got scared!

I told her if she is incapable of decisions she must tell the doctors that she cannot make decisions and pass it on to me.

I laid it out clearly. Staffing issues, not enough communication , not a major hospital , unique case , risk, after hospital care etc.

God help us. I hate this rule since otherwise a person like me who is rational will have made a decision. On the flip side I have the option of taking. To the attending physician and have him bring it up to her to transfer.

 

[The Stigenator]

PB I'll call you.

 

[BoomerD]

IANALOMP (I am not a lawyer or medical professional) but I suspect that without a court order, if you can't convince the wife to move him...it ain't gonna happen...and getting a court order will be difficult at best.
From what I've seen and experienced, spouses get the legal right to make the decisions when the patient can't make them for themselves, even when it's counter to what the rest of the family wants.
It SOUNDS like she needs to be sat down and the situation discussed with her, calmly and rationally...by his doctors, not just the family.

 

[Corporate Thug]

My thoughts and prayers to you OP. I would strongly consider a living will once he is out so are aren't in the same predicament again.

 

[alkemyst]

Well she knows it. Problem is she is incapable of handling it so not sure if will tell the doctors.

I guess I'll be blunt with her later today if she doesnt start. Xmas is coming I rather start the paperwork now and move him before 24th
Mom and dad arrive 24rh morning.

IF she wanted she can let the hospital know you can dictate his care.

This type of protection IMHO is great when non-immediate family tries to meddle with things. Once married anyone outside the husband and wife are no longer immediate in my book.

 

[chusteczka]

Does the patient's doctor have an opinion?

IMO, it is great that doctors in your family have opinions but are they fluent in the care options provided by the various hospitals; including the advantages and disadvantages with each?

Sometimes it is better to stay while sometimes it is better to move. What does the patient's doctor think about moving? I assume the physician in charge will understand the advantages and disadvantages available at other medical centers better than family.

When recovery stagnates, it is normal to think recovery can be jumpstarted by moving to another hospital that may try new or different forms of treatment. Is this truly the case or is the main motivation for moving based on frustration from lack of progress?

Sometimes the new hospital may not have enough background involvement to care as much as the former hospital that assisted from the beginning.

 

[RadiclDreamer]

I work in a hospital, the laws suck, but unfortunately a few mouths ruined it for everyone. We dont like the rules any more than you do, but they are the law and we have to comply.

 

[The Stigenator]

This morning she talked to the doctor. She was all set keep him here.

Well the doctors in his care aren't talking to each other properly. Have him heparin in low dose. Problem he has a stoke you can't as per the neurologist. I told then to wait as we got a second opinion with the neuro surgeon in the family. Now we got stuff to add to the worry.

She all of a sudden has fear in her eyes and now we got through.

She agreed with me right now. We are going to talk to insurance and move him go UCLA or Cedar. Ugh. But at least it got through after the you know what. Grr

 

[Mo0o]

Definitely go to UCLA.

 

[911paramedic]

Living will/medical directive. If he is awake, alert, and aware he can also make the decision to change hospitals.