MIL healthcare

[Scuba]

DH’s mother was diagnosed with vascular dementia 3+ years ago. When we visited about 2.5 years ago, she invited us to accompany her to her appointment with her neurologist, and while there she signed a HIPPA form authorizing the doctor’s office to release her healthcare information to DH, DH’s brother, and me upon request.

Fast forward to this week. We are planning a trip to see her soon, and thought it would be a good idea to check in with her doc’s office to hear his perspective on how her disease is progressing and what we can expect. Imagine our surprise when they told us they were no longer authorized to discuss her situation with us.

We haven’t had a falling out with her and have no idea why we are no longer authorized. Guessing that she decided she didn’t need us monitoring her health as she’s always been very independent. However we live 2,500 miles away and it was really helpful to be able to talk with her doctor about her.

If this were your mom or dad, would you mention this to them and ask about it, or would you just let it go? She may not even remember removing our authorization. We don’t know whether the office requires periodic updating of the HIPPA forms and that is how this happened, or if she proactively decided to take us off.

DH is going to ask his brother if he knows anything about this, but he hasn’t been very involved in caring for her even though he is local. He may not have even known he was ever authorized to get info from her doctor, as he isn’t one to go to the doctor himself and has never taken her diagnosis seriously.

 

[Sarah S]

She could have been asked during a visit if she still wanted the same people. I have been asked a couple of times about mine. She might have looked at it as emergency contact and kept your bil as he is local. Maybe he would call and check if you asked? Then you would know how to approach it with her

 

[Scuba]

She could have been asked during a visit if she still wanted the same people. I have been asked a couple of times about mine. She might have looked at it as emergency contact and kept your bil as he is local. Maybe he would call and check if you asked? Then you would know how to approach it with her

Yes, DH is going to ask his brother.

 

[Aerides]

If this were your mom or dad, would you mention this to them and ask about it, or would you just let it go? She may not even remember removing our authorization. We don’t know whether the office requires periodic updating of the HIPPA forms and that is how this happened, or if she proactively decided to take us off.

The trick is to find a delicate way without being "hey we wanted to call and check up with your doc and found out..." because MIL might interpret that as you going behind her back. She might not understand the rationale for calling the doc vs. asking her directly how she's doing.

Have you been checking in with her doctor, and with her knowledge, at points in between the past couple of years? If so it would be natural to say hey, we noticed.... but if there hasn't been a call to the doc in 2 years and you just found out now, then play it by ear once you see how she's doing.

Is there any chance the original agreement had an expiry?

 

[Mark1]

..... She may not even remember removing our authorization. We don’t know whether the office requires periodic updating of the HIPPA forms and that is how this happened.....

This seems most likely, tho the authorization may have never been recorded also.

 

[RetiredHappy]

I am not an attorney but have lots of direct experience in the elder care industry. When a person has dementia, in almost all cases, they are unable to legally make decisions. This would include who is authorized to have access to their records/HIPAA. Hence, get a trust, advanced health care directive / power of attorney set up before one becomes unable to make decisions for themselves.

You should ask the doctor's office why. Maybe the HIPAA form that she signed is no longer accepted because she had dementia, or maybe she signed a new form, or maybe there is some other existing Advanced Health Care Directive which was established which listted someone else as having the POA.

 

[Spock]

I am not an attorney but have lots of direct experience in the elder care industry. When a person has dementia, in almost all cases, they are unable to legally make decisions. This would include who is authorized to have access to their records/HIPAA. Hence, get a trust, advanced health care directive / power of attorney set up before one becomes unable to make decisions for themselves.

You should ask the doctor's office why. Maybe the HIPAA form that she signed is no longer accepted because she had dementia, or maybe she signed a new form, or maybe there is some other existing Advanced Health Care Directive which was established which listted someone else as having the POA.

I don't know about where you live, but in AZ and the states that have adopted the Uniform Adult Guardianship and Protected Proceedings Jurisdiction Act, this in incorrect.

There are no restrictions imposed just because a person is diagnosed with dementia.

The only way to stop a dementia patient from "making decisions for themselves" is to go to court and have the patient declared incompetent (deemed to be a 'protected person' or ward) and have a guardian (medical) and conservator (finances) appointed by the court.

Even with a conservator appointed by the court, if the patient can still vaguely remember who their family is and what their assets are (google "testamentary capacity"), the patient can still make changes to their estate plan/wills such as removing the patients children because the patient is mad at them for taking them to court unless that ability is explicitly restricted by the court.

Courts typically leave as much decision making power with the dementia patient as possible... the healthcare system will just state "he's still making decisions, they are just bad decisions"... (whatever that is supposed to mean), especially if the patient "presents well" meaning they are not naked in their front yard barking at the moon while wearing a napkin as a hat.



The conservator is pretty much being left in charge of a toddler... if the toddler has enough $ in the piggy bank and wants to play the slot machines the conservator has to hand them the quarters to let them play. The conservator can limit the number of quarters to ensure there is enough in the piggy bank to pay bills but thats about it.


While a POA gives a person the ability to act on anthers behalf, it does nothing to stop the patient from continuing to act on their own. A dementia patient can still go in and withdraw from or close bank accounts, change their will/estate plan, etc.
A patient may acquiesce to having a POA take over. But if the patient fights it a POA document just creates a legal tug-of-war or a tie between the designated POA and the patient. Despite a formal diagnosis of dementia, major cognitive disorder, etc the patient still has the power to act on their own decisions until a court formally removes that ability.

This comes from being 16 months and $95K in legal bills (so far... we're not done yet) into this process.

 

[RetiredHappy]

I don't know about where you live, but in AZ and the states that have adopted the Uniform Adult Guardianship and Protected Proceedings Jurisdiction Act, this in incorrect.

There are no restrictions imposed just because a person is diagnosed with dementia.

The only way to stop a dementia patient from "making decisions for themselves" is to go to court and have the patient declared incompetent (deemed to be a 'protected person' or ward) and have a guardian (medical) and conservator (finances) appointed by the court.

Even with a conservator appointed by the court, if the patient can still vaguely remember who their family is and what their assets are (google "testamentary capacity"), the patient can still make changes to their estate plan/wills such as removing the patients children because the patient is mad at them for taking them to court unless that ability is explicitly restricted by the court.

Courts typically leave as much decision making power with the dementia patient as possible... the healthcare system will just state "he's still making decisions, they are just bad decisions"... (whatever that is supposed to mean), especially if the patient "presents well" meaning they are not naked in their front yard barking at the moon while wearing a napkin as a hat.



The conservator is pretty much being left in charge of a toddler... if the toddler has enough $ in the piggy bank and wants to play the slot machines the conservator has to hand them the quarters to let them play. The conservator can limit the number of quarters to ensure there is enough in the piggy bank to pay bills but thats about it.


While a POA gives a person the ability to act on anthers behalf, it does nothing to stop the patient from continuing to act on their own. A dementia patient can still go in and withdraw from or close bank accounts, change their will/estate plan, etc.
A patient may acquiesce to having a POA take over. But if the patient fights it a POA document just creates a legal tug-of-war or a tie between the designated POA and the patient. Despite a formal diagnosis of dementia, major cognitive disorder, etc the patient still has the power to act on their own decisions until a court formally removes that ability.

This comes from being 16 months and $95K in legal bills (so far... we're not done yet) into this process.

My experience came from being in the elder care industry in California for 8 years. We dealt with trust attorneys, families and clients with dementia, medical offices and assisted living/nursing facilities.

We met a very smart woman who when diagnosed at early stage of dementia, immediately set up her advanced health care directive and POAs, with the trust attorney to oversee her health care needs to the end of life. A financial fiduciary was also set up to pay her bills. She then checked herself into a memory care unit but was miserable. The trust attorney then took her out and have her live with her unmarried daughter who had joint POA with another sister. The POA is deemed to be in effect when the person can no longe make sound decisions. The POA could restrict access to their mother.

 

[Scuba]

The trick is to find a delicate way without being "hey we wanted to call and check up with your doc and found out..." because MIL might interpret that as you going behind her back. She might not understand the rationale for calling the doc vs. asking her directly how she's doing.

Have you been checking in with her doctor, and with her knowledge, at points in between the past couple of years? If so it would be natural to say hey, we noticed.... but if there hasn't been a call to the doc in 2 years and you just found out now, then play it by ear once you see how she's doing.

Is there any chance the original agreement had an expiry?

We think the most likely scenario is that she went in for an appointment and they periodically update their paperwork and asked her if she wanted to keep the previous documents in place or change them. She probably took us off thinking that she’s fine and doesn’t need our help with her healthcare.

We speak with her very often and at times she knows she’s deteriorating, but she’s also very independent and proud that she can still do what she can. She’s somewhat in denial about her condition and sometimes tells us she’s getting better, even though her doc has told her repeatedly that her condition never improves, the progression can be somewhat slowed with her medication but deterioration will still occur.

 

[Scuba]

This seems most likely, tho the authorization may have never been recorded also.

It was recorded because they used to talk with us. They were quite apologetic when they said they could no longer share information.

 

[Scuba]

I am not an attorney but have lots of direct experience in the elder care industry. When a person has dementia, in almost all cases, they are unable to legally make decisions. This would include who is authorized to have access to their records/HIPAA. Hence, get a trust, advanced health care directive / power of attorney set up before one becomes unable to make decisions for themselves.

You should ask the doctor's office why. Maybe the HIPAA form that she signed is no longer accepted because she had dementia, or maybe she signed a new form, or maybe there is some other existing Advanced Health Care Directive which was established which listted someone else as having the POA.

The doc’s office told us they really shouldn’t even be telling us they no longer had authority to speak with us. Normally they just don’t talk to people making inquiries in these situations at all, but since they met us and know DH is her eldest son, they shared just a tiny bit more information than usual.

 

[Scuba]

I don't know about where you live, but in AZ and the states that have adopted the Uniform Adult Guardianship and Protected Proceedings Jurisdiction Act, this in incorrect.

There are no restrictions imposed just because a person is diagnosed with dementia.

The only way to stop a dementia patient from "making decisions for themselves" is to go to court and have the patient declared incompetent (deemed to be a 'protected person' or ward) and have a guardian (medical) and conservator (finances) appointed by the court.

Even with a conservator appointed by the court, if the patient can still vaguely remember who their family is and what their assets are (google "testamentary capacity"), the patient can still make changes to their estate plan/wills such as removing the patients children because the patient is mad at them for taking them to court unless that ability is explicitly restricted by the court.

Courts typically leave as much decision making power with the dementia patient as possible... the healthcare system will just state "he's still making decisions, they are just bad decisions"... (whatever that is supposed to mean), especially if the patient "presents well" meaning they are not naked in their front yard barking at the moon while wearing a napkin as a hat.



The conservator is pretty much being left in charge of a toddler... if the toddler has enough $ in the piggy bank and wants to play the slot machines the conservator has to hand them the quarters to let them play. The conservator can limit the number of quarters to ensure there is enough in the piggy bank to pay bills but thats about it.


While a POA gives a person the ability to act on anthers behalf, it does nothing to stop the patient from continuing to act on their own. A dementia patient can still go in and withdraw from or close bank accounts, change their will/estate plan, etc.
A patient may acquiesce to having a POA take over. But if the patient fights it a POA document just creates a legal tug-of-war or a tie between the designated POA and the patient. Despite a formal diagnosis of dementia, major cognitive disorder, etc the patient still has the power to act on their own decisions until a court formally removes that ability.

This comes from being 16 months and $95K in legal bills (so far... we're not done yet) into this process.

I agree with your post. She has a durable POA and healthcare POA in place but these don’t give the family the right to make all of her decisions just because she has dementia. She still lives alone, manages her finances on her own, and can generally function so I don’t believe any court would take away her right to direct her life at this point, nor would we want that.

 

[ivinsfan]

The doc’s office told us they really shouldn’t even be telling us they no longer had authority to speak with us. Normally they just don’t talk to people making inquiries in these situations at all, but since they met us and know DH is her eldest son, they shared just a tiny bit more information than usual.

Well I guess you need to talk directly to Mom

 

[Bamaman]

I agree with your post. She has a durable POA and healthcare POA in place but these don’t give the family the right to make all of her decisions just because she has dementia. She still lives alone, manages her finances on her own, and can generally function so I don’t believe any court would take away her right to direct her life at this point, nor would we want that.

You should consider yourself lucky that her dementia is relatively slow progressing. But someone still needs to watch her and signs of deterioration closely.

My 85 year old aunt was living essentially on canned tuna and ramen noodles. Twice her utilities were cut off for nonpayment. When she fell and couldn't get up, we moved her to an assisted living where she told everyone her nephews kidnapped her and moved her to this awful place. (It was a luxurious property.)

My close friend's wife has alzheimer's and in 2 years she has gone from normal to where she has full nursing home carer.

 

[gauss]

Is it possible that the doctors office have patients fill out new HIPPA and registration forms anually?

I think this is how it works with my DM's Doctor.

-gauss

 

[Scuba]

Is it possible that the doctors office have patients fill out new HIPPA and registration forms anually?

I think this is how it works with my DM's Doctor.

-gauss

I’m guessing this may be the case but we don’t know.

 

[Scuba]

You should consider yourself lucky that her dementia is relatively slow progressing. But someone still needs to watch her and signs of deterioration closely.

My 85 year old aunt was living essentially on canned tuna and ramen noodles. Twice her utilities were cut off for nonpayment. When she fell and couldn't get up, we moved her to an assisted living where she told everyone her nephews kidnapped her and moved her to this awful place. (It was a luxurious property.)

My close friend's wife has alzheimer's and in 2 years she has gone from normal to where she has full nursing home carer.

Yes, I agree. It’s hard from such a distance. Luckily, her granddaughter is very trustworthy and recently moved to an area about 2-3 hours drive away, so she and her DH see my MIL roughly once every 6 weeks.

 

[skipro33]

We set up my father's estate planning to include durable power of attorney for medical as well as financial when he is unable to make those decisions on his own. When his neurologist determined Dad had Alzheimer's, this kicked in and I added an abstract of this POA to his medical records. No problems what so ever after that. I could do what ever was necessary for Dad's medical decisions since I was listed as the primary on his POA.

If your MIL has an advanced medical directive, you may want to discuss having a POA for medical included. Use an estate planning atty or elder law atty to make sure you got it right. Othe wise, you might be required to go through the courts to get conservatorship. Conservatorship from the courts requires all sorts of documentation I was glad I didn't have to go through.

 

[Scuba]

We set up my father's estate planning to include durable power of attorney for medical as well as financial when he is unable to make those decisions on his own. When his neurologist determined Dad had Alzheimer's, this kicked in and I added an abstract of this POA to his medical records. No problems what so ever after that. I could do what ever was necessary for Dad's medical decisions since I was listed as the primary on his POA.

If your MIL has an advanced medical directive, you may want to discuss having a POA for medical included. Use an estate planning atty or elder law atty to make sure you got it right. Othe wise, you might be required to go through the courts to get conservatorship. Conservatorship from the courts requires all sorts of documentation I was glad I didn't have to go through.

Good idea to check out, thanks.