I was diagnosed with acute myeloid leukemia almost 3 years ago now, and was told I had a 10-20% chance of surviving. One question that ate at me, but ate even more my father when I was diagnosed was this.
"Why did I get cancer? What had caused it?"
The answer my doctor gave was this:
From that moment on, my dad became suspicious of doctors... and I see why. In the situation we were in, we were relying on these guys to give me poisons to cure a disease raging on inside my body; a disease that would've killed me if I'd presented a week or two later... They didn't even know what was going on!
Over the past few years of treatment, I've had many ups and downs in my journey. But the biggest down point would have to be the few months leading up to my relapse.
Again, my doctor couldn't tell what was wrong. For months he wasn't even sure if it was a relapse. And when he finally did confirm what it was; he wasn't even sure what the best plan forward was!
Again, we were put in a position where the ones we trusted to know had no clue what was going on!
At that point in time, I had begun my journey into studying medicine, and I knew why the doctors couldn't be sure, or why they couldn't be equivocal in their diagnoses and their treatment plans... and why they didn't recommend other, alternative treatments we'd heard about too.
But my father didn't get it... and neither can millions who believe that doctors, pharmaceuticals and governments are only out for their money...
And we use these studies (if they're deemed accurate, feasible and reliable by the wider scientific community), and the conclusions drawn by them, to recommend the best treatment to patients.
Why? Well, if we just look at single case studies, there are millions of factors that could make someone's disease and treatment work, or not work. Looking at hundreds, sometimes even thousands at a time, and how they fared on the other hand will give more reliable results - that will show more accurately whether or not the treatment actually works. That's what evidence based medicine seeks to do.
The gold standard of EBM is the randomised controlled trial. It's the most reliable trial possible; giving the most accurate, replicate-able results. It works by randomly assigning half the participants into the "treatment group", those who actually receive the drug being trialled, and half on a "control", who are given a placebo. This eliminates all biases that individual cases, smaller scale trials or those tested on a few patients (which may have other factors influencing the outcome of treatment), and that's why doctors rely on these to make decisions when it comes to treating patients.
If YOU were a doctor, and someone was trusting you to make them better (or suing you if it didn't); would you pick a medicine known and proven to work on thousands of patients or another treatment, that a few people or groups claim work?
I mean, he could understand why the doctors couldn't be sure of what to do, given the complexity of my relapsed leukemia, and he understood that a second bone marrow transplant was my only, medically curative option. But he didn't know why they didn't overtly recommend trying other treatments that may just work too.
And so, after I had received my we went to consult an doctor of "alternative medicine" in a way to see what he thought about this issue. You can read about that experience here. But in essence, that man (a doctor of chemistry) said that all cancers are caused by excess sugar and acidity in the body. He cited a few case studies of people being cured by taking high doses of baking soda (an alkaline, the opposite of acidic, naturally produced ion in the body), gave a few shady descriptions of how sugar can cause cancer and mentioned the idea that in the past, living on healthy, natural diets, cancers were non existent. And best of all - he claimed that if I cut off all my sugar, and started drinking a solution of sodium bicarbonate, that I could cure cancer.
My mum and dad were all for it. As are millions of people around the world, who believe a similar sort of thing. This alternative medicine had helped others, apparently - who knows, it may just end up helping me.
Me - given my experience and knowledge of how my disease worked, the somewhat shady reasoning behind why he claimed this diet change works and the lack of evidence behind his claims - not so much.
I was wary of his claims, and not hooked on his suggestions as mum and dad were. But I decided to try it anyway. In the end, all he said was stuff that would just make me healthy anyway - eating less junk food and more veggies.
But ever since I voiced my wariness of such claims, Dad and I have argued about this a lot. I've told him how doctors are taught to think, and he, albeit grudgingly, admits it makes sense. He can see why doctors are generally skeptical of unproven treatments, even if they have seemed to work in a few, isolated cases. But we still argue about it.
On the night of my second bone marrow transplant, I had started getting itchy and developed temperature - signs I was having a reaction to my donor's stem cells. It happens sometimes, as I was essentially getting someone else's immune system thrown into me.
It was important to get that 100mL bag of stem cells, blood cells and white cells into me quick, or the transplant would fail.
So, despite my reaction, the nurses were told to keep pushing it in... making me very uncomfortable in the process. The problem was, if it wasn't managed correctly, that reaction could go from an itch to my throat swelling so much that I wouldn't be able to breathe.
The doctor on call that night, a registrar (1 level below the consultant, essentially a nearly fully trained specialist), started putting me onto an anti-histamine injection (along with others) called cyclozine to stop the allergic reaction. After an hour, only a quarter of the cells infused (normally the whole thing takes 30 minutes), and it became obvious that the cyclozine wasn't working well, as my condition was deteriorating.
I'd had a similar reaction before (read about that here), where I was left barely breathing, inches away from death and Dad could remember exactly what medication stopped it.
"Try phernergan." he said at that point. "Last time it stopped this in its tracks."
The doctor considered it for a bit, but said, "Well, this medication has been shown to work in the same way, so I don't think it will help."
A few hours of pain and worry and hundreds of pleas by my father to just try it later, when the infusion rate was slowed to a hundredth of what it should be, the doctor finally caved, and I was given an injection of phernergan.
And he does make a fair point...
There are limitations to Evidence Based Medicine.
It is definitely the best way of delivering care to a population of patients, and though it gives us reliable, effecive medicine, now and into the future, it predisposes us to believing that everyone reacts similarly to treatment, when in truth, every person is different.
Here are some limitations of evidence based medicine.
Some treatments, though proven to be effective in a trial or two, are lacking in accuracy. This occurs more in diseases or fields of medicine where our knowledge is limited; ie those diseases, or organs, whose mechanisms and functioning is not fully understood. Usually, these diseases are rarer too, and getting enough people willing to sign up for a trial (or survey), or willing to allow access to personal health records is hard to do.
Thus even a published study, that seems promising may not be able to be replicated in for every patient that does get studied. So if these studies are taken to be gospel, without peer review and critical appraisal, they may not actually lead to good care for patients. Random controlled trials do stop any biases from happening, but some diseases, like mine for instance (acute myeloid leukemia, subtype AEL), simply don't have enough patients to even begin such trials, or, those funding them (pharmaceutical companies) don't see a market, or a huge benefit in doing them. I'll talk more about this subject in a future blog post on drug development - that one will be very interesting.
Sometimes, there are minor groups of people who won't benefit from the treatments. Some races or populations can be underrepresented in trials and hence studies aren't likely to mean they'll actually benefit from the medication. It wasn't until the 1950s, in the Korean War, until people realised that not only people of African decent, but also those from the Middle East, couldn't take anti-malaria medications without severe reactions!
In diseases, such as cancers (like mine), young people may be similarly under-represented, and are less likely to get correct disease and treatment statistics, and so evidence based medicine cannot always guarantee the best care.
That last few points bring me on to another:
The fact of the matter is - for doctors to practice evidence based medicine - there needs to be evidence to base their practice on. In diseases where there aren't many patients with the disease, this becomes an issue, and I wonder at times, do doctors rely too much on EBM?
In my case, when I relapsed, there just weren't enough patients to do studies on for my doctors to make a strong decision going forward.
They were trying to follow a bone marrow transplant protocol - basically a rough outline of the treatment regime based off how a good chunk of patients had done on similar regimes - something that my father believed would limit them to studies that weren't applicable to my case. That protocol alone may just not have been enough.
Luckily though, I've managed to get some extra treatment on top of my own, a medication which boosts the anti-tumour effect of the bone marrow transplant. That only happened after I did a bit of my own research, and even though my doctor agreed it would be a good option to go to, I almost didn't get it because there wasn't enough evidence, yet, to justify it's use to the health system (even though some preliminary studies, with promising results, had been done).
Similar things happen in other rare diseases. In the case of neuroendocrine tumours - a disease only occurring in 1/100,000 people, treatment options are extremely limited. If chemotherapy doesn't work, then doctors have no idea of what to do because there simply isn't enough known on the condition. There has been evidence of a stem cell transplant working to cure that cancer, but again, because it's only a single case study, doctors are usually unwilling, or simply unable to try this treatment out. I know someone personally who's been unable to get one done, but luckily, her disease is in a good, relapsed state at the moment.
Why? The medical board in the country she's located in just doesn't know if it works... And, given it's a very risky, expensive procedure, they aren't willing to go ahead with it. Because there's no evidence, doctors aren't able to try new treatment strategies, ones that may just end up being the best possible treatment. And because there's a small number of patients with the disease, pharmaceutical companies can't actually make a profit on this industry. This isn't because they're evil and don't want to help, but because 1 drug costs between $4 and $11 BILLION to develop... For only a few hundred, to thousand patients worldwide... there simply aren't enough people to pay for research into the topic. I'll talk about this soon in a big blog post
Sometimes, when there aren't any studies or extensive cases to back practice on - which occurs often in rarer forms of diseases, little progress is made because doctors aren't willing to think or try things outside the box.
Basically, these are treatments that aren't proven by medicine. Things such as hypnotherapy, acupuncture and homeopathy, which haven't been studied extensively can't be actively prescribed or recommended by doctors.
These treatments, lifestyle changes, don't have evidence to show they work. And that's why doctors don't advise patients to try them.
So... the question now becomes...
The fact is, some of these things simply can't be tested. Evidence Based Medicine relies on RCTs, of large population based studies to give proven, effective treatment to patients. But any scientific study requires strictly controlled environments, with only 1 or 2 parameters (for instance, cholesterol levels or liver enzyme tests) or guidelines or goals, (such as achieving remission in cancer drug trials), to test the hypothesis being studied. It's hard to define these parameters in some of these alternative fields - in things like Tai Chi (which works on 'improving life force'), psychology (which acknowledges the difference between patients, and rarely conducts studies) and it can also be hard to physically achieve in some cases, for instance in diet.
That last point I made alludes to an economic and compliance reason why there's little or no trials in many fields. For example, it's not easy, or cheap, to get a population of 5,000 people to change from being meat eaters to vegetarians, to try out a new juice, or to cut out sugar from their diet, get them to give daily blood sugar levels, weekly blood tests and quarterly stool samples for a period of 3-5 years, all the while getting them to fill out surveys to monitor their health. The cost alone of conducting such studies alone would make them unfeasible, yet alone the fact that most people wouldn't adhere to the huge restrictions a full scale, accurate study requires to be considered solid evidence.
Proof that believing in yourself and your treatment, is related to better outcomes in cancer patients. I believe I've done this myself, by believing in myself and always looking at the second, more positive way of looking at things (click to read this); but perhaps alternative medicine, or similar, often unproven methods have a role in improving a patient's psychological health - which can directly improve their actual health too.
Some Therapies Take Time:
Preventative and alternative treatments usually help people in the long term, rather than more intervening therapies which are usually ones which are studied (drugs, and surgery), which cause quicker changes. Longer term therapies aren't always trusted, or relied upon by doctors, as they usually aren't as powerful or effective, and because doctors can't ensure that patients will stick to them. It's why we, in the developed world, have an obesity problem, despite doctors, and everyone knowing that being overweight leads to multiple health problems.
This may incline doctors to choose, or emphasise the importance of more direct treatment plans over preventative measures. Things such as cholesterol pills, which can have side effects of decreased short term memory, over reducing bad fat intake, or anti-depressants with varied side effects instead of psychotherapy (though this is also due to a difference in approach to treatment by psychiatrists and psychologists).
The lack of compliance on patients' behalf and the long term nature of some treatments can therefore influence doctors' practices, as well as the lack of evidence for other treatments.
So a dieting/fitness agency can tell you their super-foods and exercise regime will make you lose 10kilograms (22 pounds) in 5 weeks, homeopaths can tell you that eating a certain leaf will cure you of your cancer, and other such practitioners can claim such things, but that doesn't mean that they've been proven to definitely work... I'm not saying they're all frauds here, but unlike doctors, they can't be sued for going "off the book".
And because these things don't have to be proven, getting evidence on how they work is almost never done, at least not in a scientifically valid manner.
These therapies aren't uniform, or based on science, like medicine is.
THAT'S why doctors don't prescribe, or recommend treatments that aren't proven.
So you can see why usually only choose/recommend methods of treatment that can and have been tested, and shown to work and why they may be skeptical of other, unproven treatments.
But that doesn't mean that they should blind themselves to them. As I mentioned above, for a variety of reasons, some things just haven't, or can't be tested. And refuting any claims that they work outright, or arrogantly, will only fuel the already growing distrust of the medical profession.
And there still will be patients who approach them refusing medical treatment and opting out for other ones. Knowing about those other treatments and how they work is key to educating patients of the risks and benefits of that therapy, and key to keeping their patients healthy, and not turning them away from properly proven medicines.
Instead, they should try and educate patients as to why they need proven, medical treatments, and encourage them to do things alongside that to make them healthier.
Patients will come to doctors with many preconceptions and with their own beliefs on how they should be treated for a disease. Many of these preconceptions may be fueled by ignorance, and many are caused by deliberate misinformation, almost fraudulent (and sometimes outright fraudulent) in nature.
What we doctors should do is recognise WHY patients pick these treatments over their proven ones, and try to FIX those preconceptions.
- Some patients will have had, or heard of others having bad experiences with doctors in the past. This will make them hesitant to trust a doctors' words and treatments, and more likely to turn to other methods, which may not be as effective. That's why doctors should always act in a professional, and compassionate manner. Building trust with patients is key to ensuring they get care when they need it.
- Some patients may believe that there's a whole "conspiracy" between doctors and pharmaceutical industries, where all they care about is making money and not their health. This thinking may cause them to turn away from proper, proven treatment from doctors when they get sick, or not get vaccinated (click that to see why anti-vac movements ARE a fraud) or other things which endanger their health because of this mentality. Educating patients on why this happens, and on why you're taught to think this way will help to stop this. Any med students or doctors reading this can do this with individual patients on their treatments, and why it's best. I'm doing my bit by writing about it. As I've said a few times, my next post will be about pharmaceutical companies, how they work, whether or not they're evil and how to improve them.
- Other patients will simply not be able to accept the side effects, or lack of hope associated with medications. And hence they may be turned off proper treatment. Again, educating them one on one will help. But empathising with them, and why they're turning towards other treatments will allow you to connect to them, and that connection and trust will ensure that they make the best choice for their health in the long run.