INFORMED CONSENT
Professor Roger Homan – Ethical Advisor to reMEmber
The principle of informed consent is nearly sixty years old. During the
second world war internees in concentration camps had been used as
involuntary subjects in medical research; some, for example, had been
partly frozen in research on the effects of frostbite.
At the end of the war the Nuremberg Code offered the formula that has
now become standard not only in medical research but in therapeutic
procedures also. In its current applications, it requires that patients
should be told of the nature of any procedure - including purpose,
risks, and consequences – and that they should be given the option of
declining to participate.
Thus the term informed consent has two components, the principle of
explanation and that of voluntariness. In a litigious society the
neglect of either of these professional obligations will have different
consequences. A physical procedure without the consent of the patient
might be construed as an assault and could be prosecuted in a criminal
court. The failure to give proper information, on the other hand, might
be thought an act of negligence: a patient who, for example, is in some
way impaired as a consequence of treatment without having been told that
it was always a risk could take action for damages within the civil
courts. Thus the code for dentists speaks not of informed consent but of
‘information and consent’.
In practice neither informing nor the securing of consent is a
straightforward matter. A patient may be unable to comprehend the
technical detail of complete information. It could even frighten
patients from undergoing a beneficial procedure. I know myself to have
been terrified by the lists of possible side-effects that accompany
medications collected from the pharmacist and have been inclined to
tolerate the condition being treated rather than take statistically
insignificant risks. Information is necessarily selective: a prudent
selection delivered in a calm manner by a consultant who seems to know
what he or she is doing may be more likely to secure consent than a
thorough appraisal by a nervous medical student.
The more information given, it seems, the less likely is the patient to
consent.
The right to give or withhold consent implies the right to know. This in
turn suggests an obligation on the part of professionals to inform. But
there is also an entitlement not to know and this is very difficult for
professionals to judge. Some years ago I suffered a paralysis from which
I was told with helpful assurance that I would recover and I worked at
physiotherapy and other means in the confidence that I would do so.
Nowadays patients are able to discover the mortality rate and limited
probability of recovery from the world wide web and can resign
themselves to a less active future. It helped me to be spared that kind
of intelligence!
Again, some may have read in the newspapers of a recent case in the
United States in which a young woman entered hospital to donate a vital
organ to her father who otherwise would have died. Obviously, blood
groups were compatible. Both survived the operation. However, it
transpired that she and he were not biologically related. The inference
was that the mother had an affair of which neither the donor nor her
supposed father had been previously aware. They had the right to know
and the doctors had the obligation to tell them. But the consequences of
that obligation might have been destructive. Never mind what they
decided: we merely recognize the weight of the burden placed upon
professionals by the right to be informed.
Patients and Medical Research Ethics
Bill Kent –Member of Brighton East Research Ethics Committee and
Secretary to reMEmber
In the NHS medical research is allowed only with the permission of the
Research Ethics Committees (RECs). The people conducting the research
have to satisfy the RECs that patients have been fully informed about
the proposed research. This includes any adverse effects and that they
know they can refuse to take part or withdraw at any time. This is a
safeguard to protect patients.
Posted by Janice Kent – Director, reMEmber
HYPERLINK "http://www.remembercfs.org.uk/"www.remembercfs.org.uk
me_cfs@hotmail.com
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One problem that many CFS patients have is that they are denied their right to REFUSE a specific treatment and request something else. I repeatedly made it clearthat I did not want anti-depressants, psychiatrists had said I was not depressed, anti-depressants are proven useless against CFS. And left the appointment with a prescription for anti-depressants anyway because the doctor wouldn't let me refuse a treatment I didn't want. (Of course, I did have the option of not filling the prescription, but that left me without any treatment for what truly ailed me.)
On one occasion, I repeatedly advised the doctor that the prescription he had just written was for something that I had been told by doctors AND pharmacists not to take because of a prior reaction to a related medication. My attempt to refuse this prescription was rebuffed with assurances "it'll be fine". A few days later, I showed that prescription to another doctor, who reiterated what I'd been told by multiple doctors and multiple pharmacists, with a blunt "are they trying to kill you?"
I may have legally had the right to informed consent, but when I tried to exercise it, I was bullied, coerced, and left with no alternative but the prescription that the doctor wanted to make initially. A right to refuse treatment under informed consent is useless if there's no reasonable alternative offered. It was never "OK, if you don't want to take anti-depressants, how about a sleeping pill?" It was always "take the anti-depressants and if they don't work, THEN we'll talk about trying something else." Except that at the next appointment, it was the same old argument again, with only the name of the anti-depressant changed, and assurances that if the first three varieties didn't work, maybe the fourth would. Never mind that I had research backing me up that no variety of anti-depressants will cure a virus, I could not have treatment for any of my symptoms -- not the intense pain, not the severe insomnia, not the digestive problems, and certainly not an anti-viral medication -- until they had tried every last anti-depressant on the market.
I AM now permanently impaired as a direct consequence of treatment because their insistence on treating me for something I don't have, while ignoring the proper treatments for what I was previously diagnosed with by a specialist, allowed me to deteriorate and suffer physical damage. It should be a surprise to no one that a disease left untreated WILL get worse.
It's truly a "fate worse than death" to know that you'll never work again because you put your faith in doctors who were too stubborn to consider an alternative, and because your attempts to put Informed Consent into action were refused. It's why I speak out publicly -- to make sure that other patients don't suffer the same fate.
If your doctor will not consider anything other than an anti-depressant for your CFS and/or fibromyalgia, CHANGE DOCTORS. Don't do what I did and think that you will eventually prove to them that they are wrong and you are right -- it's impossible, and it wastes valuable time in getting prompt treatment before the virus does permanent physical damage.
My crucial mistake was in believing their assurances that "next time" (and "next time" and "next time" again) they would listen to me (and my prior specialist) and prescribe what I wanted instead of first wasting years trying one useless anti-depressant after another (and then being accused of "not wanting to get better and have to go back to work" when I reported that the anti-depressants made me sicker ... which is, in fact, a normal side effect of taking drugs for a condition you don't actually have).
And if you do suffer damage from a treatment you were not allowed to refuse, remember that you do have legal rights, but you have to act quickly. Don't let the doctors and their "next time" promises string you along until your time to sue has expired. My doctors knew exactly how long they had to make empty promises until I lost my right to apply for State Disability, and to run out the clock on my medical malpractice claim. All they had to do was to keep sounding sincere in promising I would get what I wanted at my next appointment if I'd just humor them one more time, knowing that I was not likely to change doctors and re-start the process when I was supposedly "that close" to getting what I asked for.
Thankfully, a doctor I really could trust asked that question "are they trying to kill you?" and convinced me that I was being played for a fool in an attempt to eliminate what they knew could be a massive medical malpractice claim against their medical group, or I might still be falling for their promises of "next time" (or have taken something that resulted in death).
2 comments:
"Never try teaching a pig to sing; it only wastes your time and annoys the pig"
Sounds like most of the male doctors you have had were perfect little male chauvanistic PIGS and all the opera lessons- or lists of facts that they didnt want to acknowledge- in the world were never going to get thier minds to change. Would posting their names, the dates they mis-diagnosed and mis-treated you and where they are located so that others can avoid them be at all possible, or would it be something they could sue >you< for?
ROFLMAO. Yes, the male chauvinist pigs will never learn to sing.
In 1987, I was misdiagnosed by a doctor in San Diego who was old enough that he's probably retired by now.
In 2000, a doctor in Sacramento refused to acknowledge my prior virologist diagnosis, falsely writing in my medical records that I was "self-diagnosed". He has since left the University medical group and is practicing in East Sac.
A few years later, I heard from a local support group leader that he tells *all* CFS/fibro patients to stay far far away from the University hospital, because they have such an abysmal record. Unfortunately, some of us didn't have that information and fell for the advertising of "innovative treatment", which is certainly what CFS needs. I've since heard from other doctors that they are "innovative" with things that get them headlines but the mundane day-to-day treatment of chronic illness is something they consider boring and a necessary evil; not just CFS, but any other chronic illness that can't be magically cured.
If anyone wants exact names, just ask, and I'll send you a private e-mail.
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