• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

How much information should patients be given?

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
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
 
Messages
15,786
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).
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.
 

Hip

Senior Member
Messages
17,809
Unless they give accurate information about it, they are at risk of being sued and losing.

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.
 

alex3619

Senior Member
Messages
13,810
Location
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.
 
Messages
15,786
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.
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:
 

Hip

Senior Member
Messages
17,809
The CDC is an agency of the US government. They're pretty well immune to ever being sued.

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.
 
Messages
15,786
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.
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.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
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.