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 …


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