Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

How much information should patients be given?

Discussion in 'Other Health News and Research' started by MeSci, Sep 3, 2015.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,954
    Likes:
    12,761
    Cornwall, UK
    NEJM article:

    Perspective

    The Paternalism Preference — Choosing Unshared Decision Making
    Lisa Rosenbaum, M.D.

    N Engl J Med 2015; 373:589-592 August 13, 2015

    The day after 19-year-old Jerry Canterbury underwent surgical laminectomy, he fell out of bed and became paralyzed from the waist down. His neurosurgeon, William Spence, reoperated to relieve pressure on the spinal cord, restoring most motor function. But Canterbury had enduring bowel and bladder dysfunction, necessitating a penile clamp. It was 1959, and though “informed consent” had been mandated for decades, its meaning remained nebulous. Canterbury later sued, claiming Spence hadn't adequately informed him of the risk of paralysis.

    Spence argued that he'd followed the community standard for disclosure, and the district court agreed. Nevertheless, the court deciding Canterbury's appeal ruled that “True consent . . . is the informed exercise of a choice, and that entails an opportunity to evaluate knowledgeably the options available and the risks attendant upon each” (Canterbury v. Spence, 464 F.2d 772, 1972).

    More at http://www.nejm.org/doi/full/10.1056/NEJMp1508418?query=TOC
     
    Sushi, Valentijn and JaimeS like this.
  2. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,787
    This is likely a major reason that the form of CBT based on lying to patients has never caught on in the US. Unless they give accurate information about it, they are at risk of being sued and losing. But if they give accurate information, they can't rely on the placebo effect to inflate their clinic or research stats.
     
    MeSci and SOC like this.
  3. Hip

    Hip Senior Member

    Messages:
    9,137
    Likes:
    14,052
    Too bad that this risk of being sued for using inaccurate information did not apply to the CDC in the 1980s when they invented the disease classification of CFS.
     
    ahmo and jimells like this.
  4. alex3619

    alex3619 Senior Member

    Messages:
    12,413
    Likes:
    34,775
    Logan, Queensland, Australia
    The only exemption for full disclosure is during a clinical trial in which full details of the trial have been given, but obviously not which arm of the trial the patient is on. That is it. Period. That is my position anyway. Doctors wonder why they are losing a PR war and being seen in less and less favourable light. I suspect its because patients have more information, and doctor's claims and statements are more frequently being found out over time.

    Let me be clear this does not mean all doctors. Its also the case that to fix this we require the medical community to be engaged. That however means they have to stop permitting unsound claims.
     
    SOC and Valentijn like this.
  5. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,787
    The CDC is an agency of the US government. They're pretty well immune to ever being sued. Theoretically we can instead use the power of voting to change how they operate :rolleyes:
     
  6. Hip

    Hip Senior Member

    Messages:
    9,137
    Likes:
    14,052
    Is that actually the case? I found this list of UK government departments which you can sue, but could not find an equivalent list for the US; however, I did discover that the Federal Tort Claims Act does provide limited ability to sue US federal agencies.
     
  7. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,787
    Yes, HHS is an administrative agency and the CDC and NIH are part of it. Administrative agencies have their own set of legal rules known as Administrative Law. As long as they're generally doing their job in compliance with whatever rules, it's pretty much impossible to sue them.

    There are mechanisms in place to officially complain when they're screwing around, if I recall correctly. And I don't think it protects individuals in the agencies when they violate various rules or laws - such as the misappropriation of funds.

    But since their job includes describing illnesses and disseminating information about them, they can decide how do it. Even if that means deliberately or negligently getting everything wrong and screwing over the entire patient community in the process.
     
    SOC likes this.
  8. Hip

    Hip Senior Member

    Messages:
    9,137
    Likes:
    14,052
    Well it says in the following article that the HSS, CDC and NIH are federal agencies: List of federal agencies in the United States. But I don't know much about government infrastructure in the US (or even in the UK for that matter).
     
  9. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,787
    Yes, they're federal administrative agencies.
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,954
    Likes:
    12,761
    Cornwall, UK
    The point the article in the original post was making was that some patients don't want all information. We had another thread on this, or which discussed this.

    Maybe if doctors offer to provide all info, and a patient says no thanks, that will satisfy both parties. Something in writing would be needed to ensure that everyone was covered.
     
    alex3619 likes this.

See more popular forum discussions.

Share This Page