Informed consent and alternative medicine
Posted by Nancy K
A guiding principle in modern medicine is that of informed consent. This means that not only do you have the right to make decisions about your healthcare, you have the right to have all the necessary information to make a good decision. The Oxford Dictionaries define informed consent as:
permission granted in full knowledge of the possible consequences, typically that which is given by a patient to a doctor for treatment with knowledge of the possible risks and benefits
That last part is key: knowledge of the possible risks and benefits is absolutely essential to making a good decision. A good doctor will always make sure to take the time to explain these to you, and if you feel you need information please always feel free to ask for it. My big concern though, is that this doesn’t always happen with alternative medicine. In fact, I think it rarely happens. There are two big parts to this and the first one relates to my favourite word: evidence.
Informed consent has to be informed
In order for consent to be truly informed, you need to know a few things:
- Exactly what is in the treatment, and how was it made?
- How likely is it to work?
- How likely is it to cause harm of any kind?
If any on of these elements is missing, informed consent is simply not possible. Most of this information is also, in my experience, absolutely missing from consultations regarding alternative medicine. Assertions will be made (“this is a very effective treatment”, “this has been used for years”, “my whole family uses it”, “it’s totally safe”), but evidence is not offered.
To make an example of a pet topic, if the above questions were answered honestly and frankly for a homeopathic remedy, the answers would be:
- There is no active ingredient in this treatment. It was made by diluting the original substance beyond the point where any active ingredient could possibly remain. It consists purely of solvent or vehicle (usually water, alcohol, sugar or similar).
- It cannot work beyond placebo effect, according to all of the good quality evidence and the principle of prior plausibility. All of the evidence suggesting it does work is poor quality, with systematic bias.
- It is unlikely to cause direct harm unless poorly made. It may cause indirect harm if you fail to seek treatment for an ailment that requires it.
How many homeopaths will tell you those things? Very few. How many homeopaths will directly contradict the first two points at least? Anecdotally, most of the ones I have encountered specifically deny these facts. I am not aware of any people who have had these facts properly explained to them by a homeopath. If you are aware of this happening, please do let me know (evidencebasedskeptic at gmail dot com). How, then, can consent to homeopathic treatment ever be truly informed? It can’t.
One important thing to note is that if you fully understand and accept those three facts, and still want to try homeopathy, then fair play to you. That is your choice, and it’s an informed one. Which leads me neatly to the second big component of this post – what about people who can’t consent?
Consent and children
Adults have choices. They are generally capable of understanding the information about the chances a treatment will help them, weighing that against the chances it will hurt them, and making a choice. When this is not the case, mechanisms in place to provide vulnerable people with help to make those decisions. But what about children? Where a family seems normal, happy and healthy, it is assumed that a child’s parents will make the best possible decisions about that child’s health.
Sadly, when alternative medicine enters the scene, this doesn’t always happen; otherwise wonderful parents can make some really awful choices, all the while believing that they are acting in the best interests of their children.
Recent high profile examples of this include:
- A woman who took her son into hiding, rather than allow radiotherapy his doctors felt was essential.
- An Amish family who went into hiding rather than allow their daughter to receive chemotherapy for her leukaemia
- A seven year old Canadian boy who died of a treatable infection because his mother chose to treat it with alternative medicine
- A nine month old Australian girl who died under broadly similar circumstances
Let me repeat for clarity: these are good parents. They are loving and caring, and want the best possible health for their children. They take advice from people they trust. But they are often not giving informed consent, and neither are their kids.
Happily these cases are very much the exception, but they are still tragic. The only good way to prevent them that I can see is education; good quality education for all people, so they can tell the difference between good evidence and bad evidence, and make good decisions for themselves and their families. Until they have the skills to ask the right questions and appraise the answers, people will continue to use alternative medicines for themselves and their children without informed consent. That’s not only unethical and immoral on the part of the people providing “treatment”, it’s highly dangerous too.