What Happened to Individual Agency/Autonomy? TCM, Chemotherapy and Vaccination.
Introduction
I was reading an article today on the BBC website entitled "Chinese actress' death sparks cancer treatment debate". It was about a 26 year old Chinese actress, Xu Ting, who was diagnosed with lymphoma (a type of cancer) who rejected treatment using chemotherapy/modern western medicine in favour of trying TCM (Traditional Chinese Medicine) alternatives. This was despite the urging of her followers to do the contrary.
This seems to have sparked an online debate of the sort that we sometimes see on whether this was irresponsible, unethical etc. There are also people now making this into a Western Medicine vs. TCM debate.
Missing the Point
Most of this debate seems to miss the point. It forgets that one of the principles of medicine (western, eastern or any other type) is autonomy of the patient. Except under certain exceptional cirumstances (e.g. emergencies, mental illness, lacking capacity, or children) patients must give their informed consent.
The Wikipedia article on the subject puts it quite succinctly:
"An informed consent can be said to have been given based upon a clear appreciation and understanding of the facts, implications, and consequences of an action. To give informed consent, the individual concerned must have adequate reasoning faculties and be in possession of all relevant facts."
As long as Xu Ting was able to give informed consent then her death, though tragic, is something that we must accept. I do not see any indication that at the time when she made here decision she was unable or uncapable of understanding her circumstances.
It seems precisely because she understood what chemotherapy entailed that she made the decision to initially refuse it.
If it later turns out that she was mislead by any of her medical practitioners - either medical or TCM then that is another matter.
This whole debate seems to indicate a problem in modern society and that seems to be that we forget about the "agency" of the individual.
Agency of the Individual and Personal Choice
Agency is a sociological concept which has it's roots in philosophy. Again from Wikipedia:
"In social science, agency is the capacity of individuals to act independently and to make their own free choices."
(For most intents and purposes - particularly in a medical context the words agency and autonomy can also be used interchangeably - unless you talk to a philosopher about it! )
Agency is absolutely essential in a free society and sadly something that is constantly being eroded. This is not just within the medical system but also within society in general due to another topic that irritates me a great deal which is the pervasive "nanny state" culture of modern society.
Right now it seems people are being dumbed down to the point that they either willingly allow the state to treat them like complete idiots or even worse the system just assumes that they are and does not even bother to ask them for their opinion.
Anyway the "nannying" trend in society is a major topic in itself and something which I might cover in a future post. Right now I will stick to it in a strictly medical sense. That is that:
I may think someone is making the wrong choice in opting to have TCM over chemotherapy but as long as they have made that choice using true informed consent I will defend that decision with every fibre of my being as should any other individual who respects freedom and liberty.
Vaccination
One exception to being able to give informed consent is in the case of children. In this case consent must be given by their parents/guardians. This brings us to the difficult issue of vaccination.
Let me first make it absolutely clear that I am 100% pro vaccination - the vast majority of scientific evidence is clear on that. Vaccinations are not without risk but normally the risk (as far as we know) is significantly less from vaccinations than from the diseases that they present.
That said it is a difficult subject for parents to make a decision on.
Most vaccinations are used for disease prevention and thus it is up to the parents to decide if they want their children to be vaccinated or not.
They have the right to refuse a treatment as long as it is not a life threatening situation - in that case it is understandable (though it may require a court to rule on it) if a medical professional or team provide treatments which go against their wishes.
This is not the case with most vaccinations though. If a parent decides that on balance they do not want to take a risk with a preventative treatment like this that is their right. I would strongly disagree with it - as would many others but that is what happens in a free society.
This is why I am uncomfortable with recent initiatives to criminalise parents who refuse vaccination for their children.
The solution to the problem of poor vaccination take-up is better education, more stringent research and better safety information. NOT forcing people or by extension their children to an unwanted medical procedure.
The one exception I can think of in relation to this is for post-exposure rabies vaccination.
In that case since vaccination is necessary to prevent death (and a horrendous one at that) - I think that compulsory vaccination of a child against a parent's wishes is acceptable (and would be backed by most courts).
An adult of course would have every right to refuse this vaccination for himself/herself in the same way that Xu Ting refused chemotherapy to treat her lymphoma.
Conclusion
I just wanted to re-iterate the point that I am in no way advocating using TCM or alternative therapies to treat serious life threatening illnesses over conventional treatments like chemotherapy.
Neither am I against vaccinations which I believe are an important tool of disease prevention and a major reason for the reduction in childhood illness and mortality that we have seen in the last century or so.
Most of the diseases that they treat create a heavy burden of illness, injury and death which we have lost sight of in most developed countries, paradoxically due to the success of vaccination programmes.
However, in any free society, we must always strike the balance between the needs of society and the rights of the individual. We must also be able to discuss these topics freely and without censorship.
You don't fight misinformation by gagging people.
I for one would be very afraid of a future where we were forced to take any kind of medical treatment against our wishes because if that started to happen any allusions to freedom would be gone.
Please have your say in the comments and I hope you enjoyed reading this.
If you like my work please follow me and check out my previous posts on science, photography and a variety of other topics @thecryptofiend - hope you enjoy.
Image credits: Top Image of Xu Ting is linked from the BBC article and originally from Weibo. All other images are from my personal Thinkstock account.
As somebody with libertarian leanings it's very hard to reconcile some issues. On one hand I would like parents to have the freedom to make their own choices, on the other hand it's a child's health and safety in the balance.
Since the science is so in favor of vaccines it's simply the right choice for the child's well-being. There's another factor at play too. Herd immunity. If too many skip the vaccine then there can be outbreaks. So the decision made by a subset of parents can put their children at risk.
I find it similar to maybe gross pollution. Somebody can stand there and say it's their right to do things the way they see fit. But what they do affects the quality of air, water and land resources for everybody.
So how to resolve the conflict between personal freedom and how it affects others?
My opinion is that some actions are just too damaging to others to allow individuals to make the decision that hurts others.
Edited to avoid some clumsiness. Didn't catch it all though.
Great answer.
Absolutely there is no simple solution and it is a difficult balance to achieve.
Yes and it can put other people's children at risk too. Particularly those who have immune deficencies.
That is the classic philosophical conflict in any free society. The collective group vs the individual. I don't think anyone has come up with a perfect solution.
Thanks for your thoughtful answers.
I agree TCM does have its place. I've seen my wife improvement after acupuncture for knee injury instead of adhering to the western doctor's suggestion of surgery. having said that, I don't think TCM is be all.
Acupuncture works really well for certain things like chronic pain. It won't cure you of cancer obviously but it does work for some things.
I'm with you on this one. :-)
I found it helped immensely with anxiety that I was dealing with, as well as stomach issues. If only it did cure cancer, that would be awesome.
You can't have everything:)
it seems you've gotten the over all point. the individual owns themself and the product of their labor, their children. until such time as the child can advocate competently for themself. i do not think it is a choice between chemo, a provably failed option and TCM, which really only works as a preventative. TCM is based around diet and exercise and balance in the body. it may be something to add to a treatment but is not any kind of emergency intervention of itself. the other choices are multitudinous. i have run across 27 treatments or full blown cures for cancer. to go on my list it must be comprehensible by me AND must be demonstrated effective to my satisfaction. not all claimed treatments make it onto my list. as far as vaccinations go, i agree again with your understanding of the choice being one's own. for the individual and the child or children of that individual. i am at the point where i am on the verge of quitting all debate on this subject but, you seem a most rational person who does not deserve to be misled. i would urge you to reconsider the idea that the science is mostly settled. it is not. the number of doctors, scientists, and studies to demonstrate this are legion. my view is that regardless of this and including your correct statement that the choice is the individual's, there are an enormous number of technologies out there, some not new, that are being kept out of the marketplace due to what is known as regulatory capture. the allopathic model is effective within it's sphere. it can accomplish astonishing things. it is also killing people, regularly, at the limits of it's usefulness. the FDA and AMA and other agencies have been almost completely corrupted by money and power. they are now more dangerous than helpful. the people have been so dumbed down and engineered into dependency, that they believe that only the government and the gods of the hospital can help them. a friend of my housemate went to the emergency room 3 times in 4 days, for altitude sickness, the treatment, which i stated before the first visit, was decided to be, drink some water. we are being kept in an infantile state of dependence. vaccinations and cancer not excepted. thanks, in part, to regulatory agencies, freedom of speech has been suspended. if you are interested in avenues of personal research, let me know. if not all i can say is be very careful about what you allow doctors to do to you or your children.
This is a great discussion between you two without bashing each other for your beliefs. Educating ourselves is truly the only answer, not just following the "prescribed" path. We are born to this planet and immediately a whole set of rules and agendas are placed upon us. It's time for new thought processes, for new awareness and for the courage to stand up and make change.
I am grateful for this post and the comments which provide thought-provoking content. We all have our own opinions and no one's perspective is the absolute truth--(unless it is!). Being responsible for our own life's experiences in conscious connection with well-being is of great value. Honoring and respecting the choices of others and empowering each other with experiential and well-researched information is essential to raising awareness and actually improving all of our overall experience. Open minds to new and ancient ways offers great insight.
If we continue to search for better ways and push perceived limits of our minds, we can leave this a better world than what we entered.
thanks for the positive comment. i have to admit that i abandoned this discussion in dismay. while i do find a certain fun in questioning. i do want to have positive interactions with others but, very rarely see points raised properly addressed. it so often becomes a contest rather than a common search for the truth. further on in the comments i find people such as myself referred to as silly, and an indirect threat of spamming with no reason, except an undemonstrated sense of superiority. i do believe thecryptofiend attempted to address some of my points honestly. this is refreshing and i wish that were more often the case. others here seem to believe that appeal to personal incredulity and appeal to authority makes good science. i believe this harms people. i will continue to attempt reasonable conversation wherever i think it will be well received. thanks again.
I wouldn't say chemotherapy is failed option but it is far from ideal and is by it's nature very toxic. That said there are new more selective drug treatments which are both less toxic and more effective that we are seeing great success with in early trials.
Yes many things are currently in late stage trials or being fast tracked.
If by allopathic you mean homeopathic I'm pretty skeptical of that but I don't understand how it would be killing people. That said I have looked into a lot of complementary therapies and whilst I would not advocate their use for something like cancers they do have uses for other problems and can be of benefit to people even if one only considers them to be placebos.
allopathic is the standard model, a drug for whatever ails you. i'm not talking about homeopathic. the entire system within which late stage trials and fast tracking exists, is the corrupt, captured market i'm talking about. depending on the cancer and depending on the drug, the five year survival rate can be as high as 90% in some cancers, in others this sinks to as low as 2.1%. the chemotherapies are still very taxing on the systems of the treated and exceedingly expensive. sometimes doctors even make money from each course of chemo prescribed, and have been caught prescribing chemo for people without cancer. this is not having mentioned that this does not even cure the cancer but only allows patients to live longer with it. some surveys have revealed that some 80% of oncologists would refuse chemo if diagnosed with cancer. i, personally, had lymphoma and prostate cancer. i refused treatment and sought my own. that was five years ago, i have had no recurrence. my brother had the same two cancers, went the chemo route and died three years ago. he made his choice. the patent record is online and full of ideas that work, or they would not have been granted patents. i cannot legally recommend it, but, DIY healthcare has worked for me. if i break my leg i'm going to the emergency room. short of that, i'm not going to sell myself to these failed drug companies. hope i'm not getting too overly excited here. sometimes i am not so fluent in tact. it pains me to see intelligent people harmed due to misinformation.
That is something that concerns me about the American system. In the UK it is different due to having the NHS which people pay for through National Insurance. The overall cost of health care is much lower and there is no financial incentive on doctors to do extra treatments.
What is this "free society" you speak of?
:)
I love that you play Vader as a Troll. Bravo!
nice post
!upvoted
good info
Thank you:)
One aspect of Vaccination is Herd Immunity, by not being vaccinated then everyone they come in contact with is potentially at risk. A loose analogy would be smoking cigarettes in a fireworks factory. It's dangerous. Those who visit/own the factory have a legitimate cause for alarm. The solution oftimes is the restrict smoking inside the factory. Analogous to not allowing unvaccinated children in public school.
that, however, clashes with the desire to have ALL children in Public School (in order to indoctrinate them, justify more funding for the school system, increase the size of the school system, increase the power of the teachers union, etc)
I don't think you have herd immunity quite right there. In herd immunity having sufficient people vaccinated i.e. 90% protects those who aren't vaccinated. Assuming the vaccine is effective then there is little risk to vaccinated people from the unvaccinated. The whole point of herd immunity is that you don't have to have 100% vaccination rates to protect the whole community. Once you reach a particular level of vaccination then enough of the heard is resistant to the disease that it stops spreading and eventually can be eradicated.
Not being vaccinated only poses a risk when the unvaccinated grow to a sufficiently large pool that one can no longer rely on herd immunity to protect the population as a whole.
This is correct. Herd immunity works because it reduces the number of transmission vectors available to a specific incident. That being said, small outbreaks of nearly extinct diseases do occur and if your child is not vaccinated, you should try to keep them isolated if an outbreak occurs near you as herd immunity does not magically protect your child. It does, however, significantly reduce the likelihood that an outbreak could continue to spread and become an epidemic.
Overall, I think this is great post with well thought out ideas that balances personally liberty, responsibility, and sound science.
You got it exactly right.
It should also be noted that some people can't be vaccinated or are unable to have immunity due to immunodeficiency syndromes and other diseases. These people rely on herd immunity the most since they are also those who are most likely to be unable to fight the actual infection.
Thank you:)
Just wanted to say I really appreciate this article. I don't have children but I'm on the fence about the vaccination issue, I personally almost died from a vaccination as a child but have had others as an adult with no issue. Anyhow, I just appreciate your very logical discussion here. I really love that Steemit tends to attract this type of person like you who can reason intelligently on a matter and come to their own conclusion without trying to force anyone who might listen to agree with them. Keep up the good work!
Thanks. Yes it is a balance between individual choice and community safety. Thankfully most people understand that vaccines are safe but as your case illustrates nothing is without risk. What people often forget is the fact that a lot of childhood illnesses are quite dangerous and the reason for the vaccinations is to prevent death and disability in the first place.
Good post!
Thank you
too bad you're rep 63, otherwise I'd be spamming the #curie with this post. cant believe how antivax dont see how silly they look in light of good science.
It's not their fault it's due to a general mistrust of science and the propaganda spouted by those who gain through promoting the anti-vaccination agenda. It is well known that Andrew Wakefield concocted his whole MMR paper in order to flog his own alternative vaccines. The answer is not to ridicule people though it is to educate them where possible.
The issue here is that lymphoma can be treated and the survival rate is high after treatment. Just like in any other cancer cases early diagnosis is the key for a successful treatment. In the case of Xu Ting, early treatment was ignored because of TCM as an alternative.
No the issue is personal choice. Even if you don't like a patient's choice it is up to them whether they choose to take a treatment or not.