Daughter with potential brain tumor (Florida)

[myrab51]

My 20 year old daughter has been having serious health issues. She’s already on spectrum, and now she’s having cardiac, seizure and other issues that her doctors feel indicate a possible brain tumor. Several of her doctors refuse to let me go back with her, even when she gets a lot of anxiety and asks them to let me be in the room, repeatedly. They load her up with info and tests she needs, and by the time she gets back to the waiting room to tell me, she can’t remember what all they said. It’s getting very frustrating. Last visit, she finally started tearing up and saying she really just wanted her mom before they finally caved and let me back. I do NOT want to strip her of her right to make her own health decisions, but I do need to know what I can do to force the doctors and staff to allow me to be included in her visits so I can at least help her manage her meds and appointments. Right now, they’re too busy throwing it in my face that she’s an adult to care that she’s an adult that is on spectrum, struggling, dealing with tumor side effects, and that she’s the one asking for me. What do I do?

 

[LdiJ]

My 20 year old daughter has been having serious health issues. She’s already on spectrum, and now she’s having cardiac, seizure and other issues that her doctors feel indicate a possible brain tumor. Several of her doctors refuse to let me go back with her, even when she gets a lot of anxiety and asks them to let me be in the room, repeatedly. They load her up with info and tests she needs, and by the time she gets back to the waiting room to tell me, she can’t remember what all they said. It’s getting very frustrating. Last visit, she finally started tearing up and saying she really just wanted her mom before they finally caved and let me back. I do NOT want to strip her of her right to make her own health decisions, but I do need to know what I can do to force the doctors and staff to allow me to be included in her visits so I can at least help her manage her meds and appointments. Right now, they’re too busy throwing it in my face that she’s an adult to care that she’s an adult that is on spectrum, struggling, dealing with tumor side effects, and that she’s the one asking for me. What do I do?

I have never encountered a situation where a doctor would not allow someone to come in with a patient if that is what the patient wants. Therefore there has to be a reason why multiple doctors are doing that. Are you perhaps doing too much of the talking when you are in the room? Are perhaps the doctors feeling that you are trying to take over the decision making? Or, is this some kind of policy due to COVID or other issues?

It is difficult to come up with a strategy for resolving the issue without the "why".

 

[myrab51]

I have never encountered a situation where a doctor would not allow someone to come in with a patient if that is what the patient wants. Therefore there has to be a reason why multiple doctors are doing that. Are you perhaps doing too much of the talking when you are in the room? Are perhaps the doctors feeling that you are trying to take over the decision making? Or, is this some kind of policy due to COVID or other issues?

It is difficult to come up with a strategy for resolving the issue without the "why".

Talking to other parents in our autism groups, this is something that most of the parents have struggled with, after their child turns 18. There is an attitude that young adults don’t really want their parents with them for medical consults. I’m trying to be very careful to let her ask the questions and do the talking, but again… she’s autistic, and that is something she struggles with. She often does turn to me and ask for things she can’t remember, when she gets stuck, or when she just socially freezes up.

 

[LdiJ]

Talking to other parents in our autism groups, this is something that most of the parents have struggled with, after their child turns 18. There is an attitude that young adults don’t really want their parents with them for medical consults. I’m trying to be very careful to let her ask the questions and do the talking, but again… she’s autistic, and that is something she struggles with. She often does turn to me and ask for things she can’t remember, when she gets stuck, or when she just socially freezes up.

Do you have the option of changing doctors? Changing to one that will agree up front to let you in the room if your daughter wants you there?

 

[myrab51]

Talking to other parents in our autism groups, this is something that most of the parents have struggled with, after their child turns 18. There is an attitude that young adults don’t really want their parents with them for medical consults. I’m trying to be very careful to let her ask the questions and do the talking, but again… she’s autistic, and that is something she struggles with. She often does turn to me and ask for things she can’t remember, when she gets stuck, or when she just socially freezes up.

Do you have the option of changing doctors? Changing to one that will agree up front to let you in the room if your daughter wants you there?

She’s in the middle of established care for a brain tumor. It’s not really one that is easy to just switch out her care team. I’ve already looked at that option. It’s also a common attitude. I was talking to two other parents, just this morning, going through the same thing. We need a way to address the situation, as it happens to us in ERs, urgent cares, new specialists, and so on. We can’t just pull them from medical care in a cycle like that. Our last ER trip, we got this treatment. They sent her home with anxiety meds, because she couldn’t get out everything that was wrong, nobody would talk to me (even with her asking). It turned out she was having cardiac A-Fib and nobody told me, and she didn’t understand that it was a problem. I need a way to address the actual root of the problem.

 

[myrab51]

I’m honestly a little worried that they are just going to let my kid die. This is getting scary, and we’re being locked out. I reach out for help, and anyone outside the circle of those that have dealt with this automatically assume it’s you as the parent, as above. “Is it just you?” That’s something other parents I’ve talked to also tell me they deal with.

 

[quincy]

She’s in the middle of established care for a brain tumor. It’s not really one that is easy to just switch out her care team. I’ve already looked at that option. It’s also a common attitude. I was talking to two other parents, just this morning, going through the same thing. We need a way to address the situation, as it happens to us in ERs, urgent cares, new specialists, and so on. We can’t just pull them from medical care in a cycle like that. Our last ER trip, we got this treatment. They sent her home with anxiety meds, because she couldn’t get out everything that was wrong, nobody would talk to me (even with her asking). It turned out she was having cardiac A-Fib and nobody told me, and she didn’t understand that it was a problem. I need a way to address the actual root of the problem.

You and your daughter can discuss with an attorney in your area the possibility of getting a limited power of attorney so you can be included in your daughter’s health care decisions. Here is some information from the Florida Bar Organization:

https://www.floridabar.org/public/consumer/pamphlet13/

 

[myrab51]

You and your daughter can discuss with an attorney in your area the possibility of getting a limited power of attorney so you can be included in your daughter’s health care decisions. Here is some information from the Florida Bar Organization:

https://www.floridabar.org/public/consumer/pamphlet13/

Thank you! I’ll ask her about it. I was trying to avoid power of attorney, because I really truly don’t want to take her control. I didn’t know there were limited types. We’ll look into this.

 

[Just Blue]

You and your daughter can discuss with an attorney in your area the possibility of getting a limited power of attorney so you can be included in your daughter’s health care decisions. Here is some information from the Florida Bar Organization:

https://www.floridabar.org/public/consumer/pamphlet13/

Perhaps a Patient Advocate could be of help as well.

https://www.healthyfla.org/

 

[myrab51]

Perhaps a Patient Advocate could be of help as well.

https://www.healthyfla.org/

I just went and read some. I wasn’t aware this was available. It seems like it could be a solution, without me needing to control anything. I’ll definitely call tomorrow. Thank you.

 

[quincy]

In Michigan (where I live), a patient advocate is the same as a health care power of attorney. Different names for the same thing.

 

[LdiJ]

In Michigan (where I live), a patient advocate is the same as a health care power of attorney. Different names for the same thing.

It is not the same in all states. In my state, it is someone who fights for the rights and wishes of the patient. They also help people get government help who need it. I have a couple of tax clients who are professional patient advocates.

 

[myrab51]

In Michigan (where I live), a patient advocate is the same as a health care power of attorney. Different names for the same thing.

I spent Christmas night watching her lie on the couch and tremor, while her pulse was hovering around 200, she had silent seizures, and she was partially unresponsive. It’s been like this for months now, and it was pretty bad with the building symptoms before that. I just need a path, because we can’t keep going on like this.

 

[myrab51]

(And if I’m sounding grouchy, it’s lack of sleep. Please know that I’m appreciative of all of your advice.)

 

[quincy]

Following is a link to Florida’s Patient’s Bill of Rights and Responsibilities. Note that 4. Rights of Patients, (a)(5) includes the right of a patient to “bring any person of his or her choosing to the patient-accessible areas ... to accompany the patient ...” but there are notable exceptions. For example, a doctor or hospital’s Covid-19 policies could be such a notable exception.

http://www.leg.state.fl.us/Statutes/index.cfm?App_mode=Display_Statute&URL=0300-0399/0381/Sections/0381.026.html

Are you and your daughter vaccinated?