Sunday, November 15, 2009

Solemn

I would say that overall my posts are fairly upbeat and my thoughts as well. This is not the case today. Be prepared for a sad tale.... but there is a message within this tragedy. Have you ever imagined that your child could be hospitalized and that you would not have have input into her care? If your "child" is 18 years old this may very well be the case. There are so many things that can go wrong when someone is hospitalized and it seems much more likely in the mental health arena. I have written in previous posts about my friend whose daughter is currently hospitalized for a severe mental health condition. She is in "no-(wo)man's land". She is not yet out of her teens but considered an "adult" in the legal world. She is too ill to give consent for her care, and now is spending her time in a horrifying limbo of health care hell. She has been in three facilities and is now at a state mental hospital. She is too ill to give consent for the initial recommended treatment and her parents are prohibited to do so since she is no longer 17 or younger.
How did this happen? This high school girl was struggling with a tentatively diagnosed illness but suddenly things took a turn for the worse as she spiraled into a psychosis and was hospitalized. She was unable to sign the paperwork allowing her parents into the system of her care. She was assigned a guardian ad litem. Doctors could not share information with her parents without breaking the HIPAA laws. The parents are seeking guardianship but this is taking too much time. The parents (a teacher and medical doctor) are seeking custody of their daughter; custody so they can speak with the doctors, make decisions and move thngs along as we would with any health condition. Meanwhile they wait in agony.

Their daughter's mind betrays her. She is lost and unable to find her way back to any semblance of normalcy. Her parents weep. No one knew that this insidious illness was coming as quickly as it did. It moved too fast to complete all the legal requirements necessary for the parents to make decisions for their daughter's care. It moved to fast for them to recognize that they needed to have an advanced directive in place. If these two highly educated parents cannot make things happen, what about parents that are unaware of this possibility? Laws were passed back in 1967 by then California Governor Ronald Regan, setting a national precedent of required judicial hearings for extended involuntary commitment and the prohibition of forced medication, among other mandates. I get this. We have moved greatly and thankfully from forced commitment and treatment but where-oh-where is common sense humanity?

There is no answer today for this horrible situation. The parents are struggling to keep themselves from falling apart while doing what they must to support their child. I urge parents to consider having an advance directive for health care in place by the time a child turns 18. The consequences can be devasting for everyone involved if this is not in place. Yes, it may be unlikely that your child will have a major psychotic break at the end of their teenage years but this time period is when these insidious mental health illnesses show up and sometimes quickly. As well, consider this for every member of your family. Linea and I heard Kay Redfield Jamison recently speaking about her new book, Nothing was the Same, and author of, The Unquiet Mind. She is a professor in the psychiatric department and co-director of the mood clinic at John Hopkins and a leader in the research and treatment of mental health conditions. She has bipolar disorder and spoke of her own advance directive for care. As part of my professional responsibility I will include this information in my classes and assure that our future school psychologists, school counselors and teachers are aware that student become independent from their parents at age 18.

I spoke with my friend this morning and she not only again gave me permission but wanted me to share her story. She is not ashamed. She is a terrified mother. Take care, good friend. Let us all send prayers and good wishes to her family. My heart breaks for her and her family.

(Solemn and Triumphant, Painting by Jordan Swain )

15 comments:

Single Dad / Disabled Daughter said...

I would think a judge in family court could do an emergency order of some type. Hopefully they are talking to a knowledgeable lawyer. What a nightmare ...

Through Thick and Thin said...

thanks for sharing. This is something that parents never would think of. I never did. Even though my child has a way to go before he reaches 18, it is definately something that i'll keep in the back of my mind to have in place in the future.

Accidental Expert said...

What an ordeal for the family and daughter. My prayers are with them.

This is a good reminder to all of us. We're so focused on today, I never even thought about what would happen when my children hit 18. Thanks for sharing.

Brandie said...

I'll be thinking of them and sending prayers.

This is a good reminder. Dh and I have done this for ourselves, but honestly, would have never thought of doing this for our kids and although we have a way to go until one of them hits 18, I'm tucking this away to use as we get closer.

Katie Donohue Bevins said...

It's so heartbreaking. I feel terrible for these parents and their child. I can only hope that common sense will prevail for the sake and health of the family giving them the legal power to make decisions on behalf of their lovely daughter.

Sue Mayer said...

Cinda,
I had never thought about the legal issue in regards to a mental health diagnosis. Most parents of children with cognitive disabilities are made aware through a variety of sources about guardianship for our children, but I have also heard nightmarish stories about 18 year olds with Down syndrome making their own uninformed health decisions. It is scary, I pray that this family is able to work everything out.

Megan said...

Oh my gosh! How awful! My heart just hurts for this family! I never knew about an advanced directive for my child. I definitely will look into this! Thank you!

Brendon said...

Fortunately, you don't always need a lawyer for creating a directive. Check out the link below - it provides WASHINGTON instructions on how individuals can create their own advance directive. This includes naming/creating a proxy (someone to make decisions for you) and creating instructions of care (your own decisions made in advance, such as which drugs you do not want administered under which conditions). I would be doing a disservice to my own profession (I'm a lawyer) if I didn't say that having an experienced health law lawyer review the documents can help to clarify your rights and responsibilities under the law. However, these forms are an immediate and cost-effective measure to prevent against unfortunate situations like the one described. This is where I state that this doesn't constitute legal advice. :)

http://www.dshs.wa.gov/Mentalhealth/advdirectives.shtml

Cinda said...

Thanks,Brendon, for this information. You get an "A-plus" for sure!! I am sure there are similar resources in other states.

Elizabeth said...

What a horrific thing to have to deal with, on top of the thing itself. Thank you for sharing this story; your writing is beautiful. And thank you for your kind comments on my post over at Hopeful Parents. I so appreciate the feedback.

Meg said...

Yes, I can imagine this. My son was put in a psych hospital at 6 years old and it was criminal how hard it was to get him out a few days later when I realized we had been given terrible advice by a terrible psychiatrist and it was a huge mistake to have him in there. He still has terrifying memories of the experience and I feel forever guilty as a parent that I allowed him to go in there in the first place. It's really sad and tragic that these kind of things have to happen. It's also really scary.

Megan said...

We had not one, but two horrific psych.. hospitalization experiences, ones that defintely left our 9 and then 12 year old girl with PTSD and awful flashbacks. We finally realized the psych hospital in our area was the pits, and drove her an hour and a half to a fabulous one, and it was so worth the drive.

Corrie Howe said...

Cinda, this is a great post and very informative. I think it is terrific that you are teaching this to your students. I hope your students will educate their patients and families.

I guess it is something my husband and I should talk about. We have in the back of our mind provisions for Jonathan if he ends up being brilliant, but not able to take care of himself. We haven't really thought about medical. I would think this would apply to children who go off to school and have a horrible accident or something?

MaggieMae said...

Great advice... I'll have to save and implement as my 3 children get older. I'd like to say I have some time before such a terrible thing could befall any of my children but the truth is, my oldest, 8 year old Olivia, will be there in the blink of my eye. Thanks for posting it and my prayers go out to your friends and their daughter.

Cricket said...

This is great information, Cinda. It will be very helpful to keep in mind in my future profession as a school psychologist when I know that I am working with parents and/or students that have mental health conditions. I'm sure that parents never want to imagine a child getting to the state where this is necessary but clearly (and unfortunately), it happens. I hope that things have improved for the child and family since this post.