When in doubt … email!
So, a bit more on the guardianship panic issue. I sent the following email to four children’s hospitals (L.A., Chicago, NY, and Boston) and two major adult teaching hospitals. It was sent to whatever principals I could find, typically the COO.
I am having a very difficult time getting the proper answer to a question that is quickly becoming very important. Hopefully you will be able to pass this on to the appropriate person, I appreciate your time and consideration. I wish it was a hypothetical question.
If a severely disabled eighteen year old woman (emancipated, non-verbal, non-mobile, etc.) came in to your hospital, either via the ER or in a clinic, and the woman did NOT have a guardian nor (obviously) a health care proxy, would anyone be consulted in her needed care? Could a family member legally be kept fully informed, or make decisions, if it was not emergency or life saving situation? And if it was an emergency? Again, no court appointed guardian.
Thank you for any and all information.
After a week and a half, that included a follow-up “is anyone there?” two of the hospitals responded, Boston and Los Angeles Children’s Hospitals. I know that Chicago and NY read the email, but they ignored it.
First I had some back and forth with a woman in LA, the “Administrator, Patient Relations/Service Excellence.” She was giving me the touchy-feely answers, and I knew this. What I wanted to know was the real answer, the legal answer. I pushed her to “make sure” of the facts. Her second to last email to me was:
I imagine that if you can prove that you are the responsible adult taking care of this “child”, and there is a true emergency, requiring you to bring her to Childrens Hospital, I believe we will communicate with you regarding her care.
I will talk to our hospital’s compliance officer and get confirmation or obtain another legal opinion on this subject, for you.
That was the touchy feely response. Yes, we will talk with you if need be. Then she finally consulted the lawyers … a bit of tone change:
Our experts have informed me that they cannot make any promises to you, for an event in the future, that we cannot predict, with various variables that could be unforeseen. I do not know the nature of your circumstances and rationale for you to not have the necessary paperwork that is required, for you to make health care decisions for your daughter. If your daughter is ill, use your best judgment and take her to the nearest Emergency Room.
What happens next, at the time of the prospective event, I cannot answer for certain.
Thank you for allowing me to assist you.
Boston Children’s is a bit more cautious and prefers to talk not email! They fully agree that this is a huge problem and clearly state that in an emergency, the woman would be cared for. And I asked, but would I be told test results? Then I asked, if it is not an emergency, maybe a regular appointment just like ones she had when she was 17, would I be told test results? Would a doctor even see her? They will get back to me, “all wonderful and disturbing questions” I am told.
New York and Chicago hospitals, as well as two adult teaching hospitals did not respond. Remember, it is three lawyers and my state’s Department of Mental Retardation that say I cannot get guardianship until after she is 18, the scenario I lay out happens often because of them (and they admit this).
Rest assured, I will have guardianship before that birthday. Make sure you can say the same in your family!
By the way, I had a little incident here last mid week and am on some pain meds causing this huge cloud of smoke in my brain … so if I am disjoint or off for a bit, please understand.
And, one more thing, I think I finally found the ultimate wheelchair accessory! So confident, I spoke to the manufacturer and may become a distributor, and you will be the market research group! More next week when I get the first case …
Please, PLEASE, let it be a drink holder!!
How about a built-in lever to get us onto curbs?
I am not at all surprised by the hospitals responses. I believe the reality is that you will hear whatever you want if you are cooperative. That siad, however, I intend to have the conservatorship papers ready to go the day my daughter hits 18. I am an attorney (but I have never done a conservatorship before) and I found everything I need online. You don’t have to be an attorney. I would get to the courthouse or go online and get the papers myself and get them filed.It’s not difficult. I don’t know where you are, but most jurisdictions have groups who can give you assistance. There is also an excellent book by Nolo press on doing conservarotships. It’s a bunch of tedious paperwork, but it’s not difficiult.
Slightly side tracked, but every time I phone to make an appointment here in greece at the children’s hospital, they always ask how old Dimitri is, apparently they are not so keen to see children after age 14.
It may be important to get some kind of answer from a regular hospital or ER
to make sure you have your bases covered. There must be other parents who have been through this too, do you have any contacts you can question?
I do SO love pain meds. Too much.
I thought guardianship was automatically implied by the birth certificate of the person in question. I had no idea, or had given it no thought really, that once a person reaches a certain age they become whatever the state recognizes as an ‘adult’. I’ll have to look into the rules in my state.
Thanks for commenting on my Holland Sucks blog the way you did. I admire your bluntness in ways I can never really describe in a way to give it it’s proper due. It really struck a chord and made me think. But you do that a lot for me. 🙂
“I do not know the nature of your circumstances and rationale for you to not have the necessary paperwork that is required, for you to make health care decisions for your daughter.” That’s fresh! So, basically, “Mr. S.D., you are screwed and so is your daughter! Thanks so much for letting me not help you today!”
As for the chair accessory…a mini mac with a brain stem download (a la Matrix) of a wonderful life for our kids when they’re having really sucky days??!! You can test it on me first…I just need a room with a bed and non-stop sleep for 72 hours!
The line that Claire quoted really got under my skin. As if it was your negligence or fault somehow. It evoked some other adjectives from me besides fresh though…
Good luck on getting the necessary paperwork for making health decisions. I was in the situation with my brother who is multiply disabled. My mom had this power but she passed away and suddenly he was in limbo!!! It has taken me several months to get this straightened out.