1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'Other health news and research' started by c37, Aug 13, 2018.

Tags:
  1. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
    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.
     
    NelliePledge, Pechius, Inara and 2 others like this.
  2. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    Messages:
    1,450
    Wow, just Wow. :arghh:

    That would be Justine Pelletier. Her parents and their lawyer contacted this family.

    Well anyone who would question a Mayo doctor is obviously mentally ill. :rolleyes: :banghead:
     
    NelliePledge, MEMarge, Inara and 4 others like this.
  3. Forbin

    Forbin Senior Member (Voting Rights)

    Messages:
    1,581
    Location:
    USA
    Yes - and I'd go as far as to say that there is nothing that could ever lessen the esteem in which I -- how shall I say it? -- hold the Mayo.

    https://www.youtube.com/watch?v=fsj8F8wvupU


     
    Last edited: Aug 15, 2018
    diwa, Inara, Wonko and 5 others like this.
  4. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
    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).
     
  5. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    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.

    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.

    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.
     
    Last edited: Aug 15, 2018
    Inara likes this.
  6. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    2,134
    Location:
    Canada
    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.
     
    Snow Leopard likes this.
  7. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    3,827
    Location:
    Australia
    Wow, that's awful! There is something really messed up in our culture when medical practitioners use such dirty tactics in retaliation.
     
    Inara, Wonko and Trish like this.
  8. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
  9. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,734
    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.
     
    Little Bluestem likes this.
  10. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,734
    From the second ink:
    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.
     
    Last edited: Aug 18, 2018
    Little Bluestem likes this.
  11. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    3,827
    Location:
    Australia
    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.
     
  12. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    943
    Location:
    Germany
    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).
     
    Amw66, Lisa108, Inara and 2 others like this.
  13. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

    Messages:
    1,450
    Of course they do! :rolleyes:
     
    Lisa108, Wonko and Inara like this.

Share This Page