CNN: Escape from the Mayo Clinic: Parents break teen out of world-famous hospital

Seven said:
This happens a lot on ME also, and some other brain disorders. Like what is common in this people where they get retained. Are they testing drugs on them, or do they have something unique?? Like we need to dig why they get retained, what makes them different.
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I doubt it's about being different. I would think it's more about being uncooperative or prepared to question the conclusions of an 'expert' or seek another opinion. World renown in expertise doesn't always allow for patients or their loved ones involving themselves to the point of not meekly accepting every treatment recommendation without questioning. At least this would seem to be the case here from reading the story.
 
Wow, just Wow. :arghh:

Amw66 said:
Sounds very similar to the child with mitochondrial disease a couple of years ago , who was effectively held.
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That would be Justine Pelletier. Her parents and their lawyer contacted this family.

Inara said:
In this case, again, psychiatry was involved in the sense that the mother was called "mentally ill" (most probably for "provoking" a senior physicist) which formed the basis of trying to get a guardianship.
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Well anyone who would question a Mayo doctor is obviously mentally ill. :rolleyes: :banghead:
 
On thinking further I believe the problem exists at the communication level between interested parties and the Dr./medical team. There are worse and better ways of approaching any concerns of course but medical professionals should be aware and be sensitive to family members/patients rights to question and that not all people have either a high degree of skill at this type of communicating or the right terminology etc. This should not be an impediment to seeking to advocate for the patient.

It's likely that having to consider the rights of patients and family to question drs/medics is seen as a nuisance and overly time consuming but especially for cases where there is grave danger people ought to be able to do their own due diligence and seek a second opinion.

The problem is also money as well as potential god-like Dr hubris. There ought to be available immediately a patient/family liaison person who is not hospital affiliated and who is properly trained to be primarily on the side of patient/family but able to communicate the medical teams position effectively. This would cost money. I know that there is a similar position already in existence (but not exactly since they are employed by the hospital I think and their training may not be adequate).

It seems to me that in this case that too much authority was being sought by the hospital. But there are cases also where well meaning but negligent parents have sought to heal their children with quackery and medicine/the law should intervene. This happened a while ago in Canada with a now infamous case of parents who were alternative health practitioners and did not seek medical treatment for their child who had meningitis IIRC. The child died. This kind of story tends to reinforce medical people's beliefs that parents etc cannot be trusted (although in the above story there was no hint of seeking alternative treatments).

This story is certainly a cautionary tale to me in that if you are advocating for someone you need to exercise extreme caution in how you approach the medical team and to get outside help/advise early on along with someone who can bear witness to any conversations etc. Medics need to see beyond the fear family has in such situations to recognise their capabilities and strengths to aid the patient. But this would require they take the time and also that they recognise they are not always right, particularly in their assessment of what is essentially an unknown (prognosis).
 
Snowdrop said:
It seems to me that in this case that too much authority was being sought by the hospital.
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This wasn't a case of disagreement in good faith, this was bad faith by whoever at the hospital was trying to take rights away from the patient and their family without the family doing anything wrong.

Snowdrop said:
This happened a while ago in Canada with a now infamous case of parents who were alternative health practitioners and did not seek medical treatment for their child who had meningitis IIRC. The child died. This kind of story tends to reinforce medical people's beliefs that parents etc cannot be trusted
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I agree but there is a big difference from quackery to medical disagreement. The Mayo case did not involve the family making obviously harmful decisions or putting their child at preventable and unnecessary risk, it involved malfeasance by the hospital.

(although in the above story there was no hint of seeking alternative treatments).
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They did, except their ideas were beyond stupidity and they have never learned their lesson, from their statements and actions since they would do the same things again because they still believe all modern medicine is a hoax and their utter stupidity is legitimate.
 
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I agree with the first two points. My post was perhaps not entirely thorough or precise, it was rather a long post for me in my present condition and there was more to be said. I was trying to be both brief and clear while there is a lot to say on the subject.

As for the third point I have no idea in regards to it. I don't recall reading anything to that effect. It could be I missed it or forgot. My bad.
 
I read the first article. In my opinion, Mayo is trying to shed a good light on themselves, whereas painting a very negative picture of the mother.

We won't ever know what really happened. Reality may lie somewhere between the two stories.

(Personally, I'm on the family's side. I don't think you would "abduct" your child from hospital without a good reason - even with the help of the stepfather, too, who must be also crazy, like the mother.)

I can imagine a mother to get "aggressive" when she fears for her child. In fact, that's natural. One should note that women are called "aggressive" much earlier than men, who are called "determined". I was called aggressive for saying my opinion and asking questions. If I was shunned from my child (as Mayo did when they blocked the mother from the campus) I would certainly become very angry, at least.

Edit: In fact, after reading the article again, I find Mayo disgusting. Playing the "abusive family" card is very low.
 
From the second ink:
Mayo refuses to acknowledge that the patient in this story, Alyssa Gilderhus, an adult, asked to be transferred, and that her family asked as well. Mayo claims that it had no idea Alyssa wanted to leave Mayo, even though there's written proof that she did, and Mayo had access to those writings.
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There was a letter by a lawyer, wasn't there? How can Mayo then say they didn't know?

Edit: Both articles are worth a read. My impression is CNN researched thoroughly.
 
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The dispute was over opioid pain killers - the young woman was in a lot of pain, but the Mayo clinic, with all the controversy about the "opioid epidemic" took her off those pain killers and that is when the dispute started.

Mayo is unwiling to be transparent about their actions - so clearly they are trying to do a PR job, rather than be open about it.
 
A German girl with very severe ME was held hostage at the neuro-pediatric station at a university hospital in Germany for 2 years. The mother had her parental rights removed because she objected to the "activation regime" and was only allowed to see her daughter for 15 minutes per day.
http://www.shoutoutaboutme.com/advocacy/mirjam-knapp-cards-wanted/

Nigel Speight has talked about this case. He was asked for help and gave information at a trial before court. The court ordered that the hospital had to let the girl go (and the German hospital changed the ME diagnosis into pervasive refusal syndrome on the release papers).
 
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