Sunday, October 05, 2008

being a bad patient

Sam and Savannah running free at the outdoor lagoon in Airlie Beach, Australia
Copyright (c) 2006 Wendee Holtcamp

Yeah yeah yeah I'm a lot to handle
You don't know trouble but
I'm a hell of a scandal
Me I'm a scene I'm a drama queen
I'm the best damn thing
that your eyes have ever seen
- Avril Lavigne, Best Damn Thing

I love this CNN article/interview with Evan Handler, who played Harry Goldenblatt on Sex & The City, Being a bad patient can save your life. He had leukemia, and what he means by being a bad patient is not just sitting back and doing whatever your doctor tells you. You have to be your own advocate for your healthcare. You have to research treatments, medications, and so on if you really want to heal because no one cares more about your life - or your children's if you are an adult caring for your kids' health - than you do.

I strongly believe that the medical industry has become very corrupted by pharmaceutical industry incentives and greed, and doctors rarely do good jobs at diagnoses these days. They give you medication and hope your symptoms go away, and if they don't, well come back in a few weeks and we'll try something different. Doctors are not required to take any nutrition class during their entire medical school education, which is truly sad (And one of the reasons I chose a midwife for my childbirth). There's no lesson in proactive medicine without nutrition. I have talked to Savannah about this because she wants to be a doctor and I've talked to her about looking into the interface between eastern and western medicine because being holistic about your health is the way to go. And it's being more accepted by the mainstream medical complex in the Western world anyway. Today many insurance companies cover acupuncture, massage therapy, midwifery, and other things that were not covered even ten years ago. When I wanted to use a midwife I had to pay out of my own pocket for a midwife despite having excellent health insurance at the time. I bartered, and designed a website ( for my midwife!

Anyway, there are so many natural treatments out there that do not require you ingesting weird manufactured chemicals or rubbing them on your body. And when it comes to even natural things, I am a huge skeptic -- but let me tell you an example of how something natural healed an ailment. My friend Amy sells Young Living Essential Oils products and I had a plantar's wart on the bottom of my foot that I've had doctors burn to no avail, and give me medicine for, to no avail. I've used over the counter wart medicine, and prescription. Nothing worked. She told me that she put oregano oil on a wart she had and it went away. I was like, ya, whatever. She said she put a bandaid on it every day also so I thought to myself, I'm going to try an experiment. And so for a month I put little round bandaids on my wart to see if just "starving" it of oxygen may be the thing that did the trick rather than the oregono oil. Nope, no cigar. Didn't work. So I said ok, give me a sample and I'll see what happens. She gave me oregano oil and I used it a couple times a day for about a month, and.... the wart is now completely gone. No joke. Oregano? Who knew.

Then just the other day, another friend who had an infection on her skin who had gotten all kinds of treatments from the doctor, changed her laundry detergent and soap, and everything eventually did some research of her own and then was telling me she decided to start taking multi-vitamins and oregano oil. Turns out she determined the rash was some sort of fungal infection. I was like, you're joking! How did you hear about oregano oil? (I hadn't told her about my own story with oregano oil). And I can't remember how she found out about it but some online research or something. Apparently oregano oil has very strong anti-fungal and antibacterial properties. She takes it in pill form. And so how much money do we people spend on anti-fungal medicines and wart medicines that have all kinds of horrendous chemical compounds that cause yet other problems, when something totally natural, totally healthy, and made by God will heal our ailment?! And there are no doubt dozens of other examples out there. It's partly why I do the lemonade cleanse regularly because I believe in refocusing my energy on purity, health, and eating healthily.

I'll also say that many doctors do not usually take too kindly to patients who question their wisdom. It takes a confident and understanding doctor to have his or her authority challenged. Most patients don't, so they're not used to it. I've had a few that respected me for taking the time to research the issues myself, but most of them make you feel bad for doing things like questioning the necessity of certain vaccinations, or certain medicines. Case in point, Savannah just had an ear tube removed that was placed in there when she was a toddler. Usually they fall out naturally but one of hers didn't so she had to have it surgically removed.

As I blogged about when I had my own surgery, I completely disagree with the concept of getting an Amnesiac (a medicine given by the anesthesiologist to make the patient not remember). What is the point? First of all, doesn't it seem kind of 1984 or Brave New World-ish? It's like, if the patient can't remember something, there's less chance of a malpractice suit. When I told this to Savannah's doc, he was like "I can promise you there's not a conspiracy going on here." I said "it's not that I think there's a conspiracy, I think that it's in the best interest of the doctor, not the patient..." He said, well for younger kids I won't do it without the amnesiac (propofol is what they use) because they get terrified, and why would you want them to remember that?

I didn't continue the conversation with him because he was getting defensive, and he'd agreed to my terms already anyway, but in my head, I was thinking, I'd rather myself or my kids remember whatever happens, no matter if it is scary or not, simply for the sake of knowing the truth. An Amesiac reminds me of the date rape drug, to be honest. It's bad enough that women get raped with that horrendous drug, but it makes it harder to deal with in any kind of therapy, because they have to wake up from the event with a part of their memory stripped permanently. If a child (or adult for that matter) gets terrified in surgery, I would think if it has some lasting impact it would be better to have that memory fully alive so they can then talk about it and work through it than have it buried in the subconscious so that it's all muddled and fuzzy.

Anyway the second reason I disagree with the use of the Amnesiac is that the fewer medicines given to someone, the better in general because there's less chance of a freak negative reaction (I just saw that movie Nights in Rodanthe where a doctor's patient had died from a freak reaction to anesthesia). You have to sign all that fine print paperwork that 99% of people don't read, but the reality is, most people do not think that a freak reaction will happen to them. But it might, and why increase the risk unecessarily? I'm lucky that the kids' dad is 100% behind me on things like this.

I pretty much feel this way about just about everything that is important. If it's important, whether health, relationship, education, religion, politics, parenting, or whatnot, question it! Question authority! Question the status quo! Do not just believe blindly what someone has handed to you as the "truth." It makes life a little more challenging because it takes more work and more effort, but in the end it's well worth it. And when you're making decisions for your kids who can't make as informed of decisions for themselves, and their lives, it's very worth it to do your research.

As philosopher Immanuel Kant wrote in 1784 in his essay, What is Enlightenment:

"If I have a book which understands for me, a pastor who has a conscience for me, a physician who decides my diet, and so forth, I need not trouble myself. I need not think, if I can only pay -- others will easily undertake the irksome work for me."

And he continues:
"Immaturity and dependence are the inability to use one’s own intellect without the direction of another. One is responsible for this immaturity and dependence, if its cause is not a lack of intelligence or education, but a lack of determination and courage to think without the direction of another. The motto of enlightenment is therefore: Sapere aude! Dare to be wise! (ie. Have courage to use your own intelligence!)"

I talk about these issues in my book which I'm working on (to be published by Beacon Press in 2010) about making peace between Christianity and science and reason - about balancing a Christian life in a scientific world.


Anonymous said...

After my experiences with psychiatry, I would definitely second the "be a bad patient" advice! As you know but readers may not, I wound up in the hospital being detoxed from a prescribed medication that was both too high a dose and the wrong med (it was an antipsychotic and I am neither psychotic nor bipolar, which are the only indications for that drug). When I tried to challenge the doctor prescribing, she dismissed me and basically indicated that my being upset and questioning her was proof that I was a nut job that needed massive sedation. I also wound up firing two therapists because not only were they not helping me, I felt I was going downhill. I just kept looking for a better doctor and a better therapist and now I've found them but ONLY by listening to my inner voice and my body telling me "something is SO not right here!" about the treatment I'd been getting. Wendee is right: Question Authority!

Unknown said...

Wow I didn't realize that about the one doc thinking that because you questioned her it suggested there was something wrong with you. It's so One Flew over teh Cuckoo's Nest! Good for you for standing up for what you need and knew in your gut. You are a brave and strong soul. I know there are countless stories of this happening all over the place. My friend who used to be in a nursing home used to keep detailed records of the meds given to him and his wife and he said he could not count the times they tried to give the wrong medication or in the wrong amounts. And there are so many mis-diagnoses, and chemo that kills the patient, and so much. It's not so much a total shunning of modern medicine but the absolute necessaity of being informed and doing your own research and standing up for yourself and your rights! :)

Anonymous said...

I think it is horrible that people have such terrible experiences with their health care providers. Yes, it is important to be your own advocate and understand your disease and possible treatments so that you can form a partnership with your physician. But it is destructive for people to write off every doctor, and the health care industry to boot, as greedy, irresponsible fools whose only concerns are the bottom line and exerting their dominance over the patient. You miss a lot by making these sorts of sweeping generalizations.

I didn't read through your post entirely, but there are several points which I feel compelled to comment on. Let me explain where I'm coming from: I was diagnosed with a non-Hodgkins lymphoma at 13. I'm 25 today and in the midst of my 2nd year of medical school. I hope with my unique experience and view from both sides of the fence, I can provide some additional insight. I'm also a believer in and occasional user of holistic/alternative medicine. I also read Mr. Handler's interview and in my subsequent Google-ing of him I came upon your blog.

One more thing: if you decide this post goes on too long, consider buying this book: "Hot Lights, Cold Steel". It's a memoir of an orthopedic surgeon's years of residency training. I think it does a fantastic job of providing readers a glimpse of a side of doctors people rarely see -- their personal and family. It's a quick read, intellectually interesting, and I think you'll look at doctors a bit differently -- more humanly.

Yes, health care in the US has TONS of problems. Ask any physician today and they'll be the first ones to tell you that. But a vast majority of problems exist due to things out of a doctor's control. Consider this: do you honestly believe someone would go thru 4 years of college (maintaining that 3.6+ GPA!), 4 more years of extremely challenging medical curriculum (mentally, physically, emotionally), plus an additional 3-8 years of residency -- an experience so universally rigorous that a law was put in place to reduce them to 80 hours a week -- that's supposed to be throwing us and our patients a bone? -- (all while their friends are enjoying the best of their 20's... buying first cars, going out on weekends, generally enjoying the freedom of youth), then live a life where getting called to the hospital at 3am is not uncommon, as are missing the birthday parties of your children, working holidays, constant stress, 60hr work weeks (at the low end of most specialties), plus lots more, if they didn't truly have the best intentions from the outset? I mean heck, if all we wanted to do is make tons of money we'd be lawyers and not have to worry about life-or-death decisions being on us, constant battles with insurance companies, or being sued (and yes, doctors, though they strive to avoid it, are fallible human beings). And if I wanted to be filthy rich, I'd try my hand in business or iBanking... though probably not in this economy. The point is, doctors generally hate the system they HAVE to operate in. If they refuse to play by the rules, then they plain and simply cannot legally practice medicine -- and their hopes of guiding expectant mothers to a happy and healthy baby or curing the cancer of a mother of 4 go out the window. Insurance companies, Big Pharm (who patent life saving drugs and charge exorbitant prices for them, then when that patent expires, VOILA, makers of the generic brand are suddenly able to make and offer it for a third of the price! Sure, there's research and development costs associated with new drugs, but come on), and our government have LOTS more to do with why our system is so broken. Doctors, or at least a vast vast majority, are trying their best in a sub-optimal environment. We don't need to be accused of being corrupted and greedy.

As for a few examples or comments you made in the second and third paragraph:

"... doctors rarely do good jobs at diagnoses these days"
RARELY? Every meaningful marker would indicate otherwise. Morbidities and mortalities attributed to just about every major (and every minor!) disease have declined and continue to do so, in large part due to earlier detection and a better ability to correctly diagnose what's going on in a patient's body.

"They give you medication and hope your symptoms go away, and if they don't, well come back in a few weeks and we'll try something different."
They don't give you medication blindly. They understand the underlying pathophysiology (bad processes) of the disease and prescribe drugs that are targeted toward fixing that problem -- for example, pain due to inflammation (say after a long run) is treated with Aspirin because it is a COX enzyme inhibitor. COX enzymes are in the biochemical pathway that eventually make things called prostaglandins. Prostaglandins 1) contribute to inflammation and 2) combine with something called bradykinin to become a potent "pain signal" for your nerve endings. So aspirin helps your joint pain after a run by reducing inflammation and reducing the prostaglandin+bradykinin combo. (Sweet, huh?) The problem is that each individuals' physiology, while the same at the "big picture" level, is varied and nuanced, and individual responses to drugs are sometimes changed due to these differences. For example, in the treatment of some cancers we are now able to take a sort of genetic fingerprint and determine BEFORE we ever give the patient the drugs whether they'll derive any benefit from them. Since we know the molecular mechanism of the drug, and our genes are the blueprint for the molecular machinery of our bodies (including cancer), we can tell if the drug will attack the problem. But again, sometimes things aren't so precise. Sometimes it's the drugs -- i.e. we haven't figured out how to target the drugs exactly where they need to go and nowhere else -- and sometimes it's just differences intrinsic to mother nature and her design of each of our individual bodies. In addition, sometimes the same problem can be treated with drugs that do different things. I used aspirin as an example of pain treatment -- there's also opioids like codeine and morphine to manage pain. But they attack the problem in an entirely different way. So going to a different medication doesn't mean we screwed up, it likely means your body doesn't respond to it, so we've got to try something different.

"Doctors are not required to take any nutrition class during their entire medical school education".
This might've been true a decade ago, but today I guarentee you there is not a single medical school out there worth beans that doesn't provide some sort of nutrition class for their students. Diet plays a role in SO many disease processes -- diabetes, heart disease, hypertension, to name a few -- it's imperative we have a grasp of how to advise our patients to eat. No, we're not good enough to be registered dieticians, but that's not what we train for. That's like expecting a cook to know how to farm! You also took a jab at medical education for doing little to acknowledge non-traditional medicine. I speak for my school only, but I know we have an entire GRADUATE-level division (Masters degrees and PhD's) solely for Complementary and Alternative Medicine, or CAMs. And shoot, this semester I enrolled in a medical-school-provided elective entitled "Herbal Pharmacology". So far we've met only three times, but topics covered so far include Traditional Chinese Medicine (mainly acupuncture) and Ayurveda, all of which is discussed in terms of patients' cultures, clinical significance (i.e. we might explore randomized controlled trials to evaluate the efficacy of acupuncture in the treatment of _______, and judge the studies for whether they're quality or just junk-science), etc. In the future we'll have lectures on stuff like "weird things found in energy drinks" (what the heck is all that stuff and can your body REALLY absorb all 8300% of your daily B12 provided by 5 Hour Energy?) and the DANGERS of herbal/alternative medicine (drug-drug interactions, toxic amounts of normally harmless stuff, etc). But it's important to point out, the goal of the course is to ENCOURAGE us in our interest in alternative/non-Western medicine, and make us better equipped to use it/work with people who do use it in our future practice of medicine.

I'm glad to hear that you are skeptical of "manufactured" drugs and even natural remedies. Sometimes "natural" and "manufactured" are one and the same. Penicillin was discovered on accident when a scientist back in the day noticed that a bacteria he was trying to grow was inhibited by a fungus that had contaminated his workspace. A few procedures later to isolate the compound, and we discovered penicillin! Fungus doesn't sound all that natural, sure, but hey humans eat mushrooms and those are just giant masses of fungi. Anyways, I'm glad to hear that you still keep a skeptical eye towards things just because they're touted as "natural". Anything that is "natural" and has an effect on your body is doing so through a biochemical means -- in other words, they have drugs in them that do something to your body. And every drug, if consumed to excess, is a poison.

I think I'll make this my last comment, as I've far exceeded the length I originally intended to reply with. About your doctor who became upset when you questioned him: let me assure you, that's the old-school. The up and coming generation generally looks at that sort of behavior with disdain. And we're being trained, accordingly. Every, and I mean every, school these days incorporates some sort of patient-physician relationship class. At my medical school, the course is called Patient-Physician Behavior, or PPB. In my first year, it aimed to introduce us to the art, of medicine. How do you talk to someone when you have to tell them their significant other died? It seems obvious, but in practice it's a difficult thing to do, especially to do well -- communicate all the grief and empathy you feel for the person you're breaking the news to, while maintaining balance with being the "professional" in the encounter. The PPB course helps us develop into physicians who can deal with the incredible emotions we'll feel ourselves and stir in others. It sounds like your physician would benefit from a course like that.

All in all, I think you're right about some things (take care of yourself and watch your back!) but you jump to criticism too early about others (mainly the sound reasoning/science behind much of the medical community). I hope I haven't come off as dismissive, or disrespectful. I also hope I've given you things to think about, and educate yourself about. All I ask is that when you do seek answers, you don't by hearsay, or what some random website says. Learn to evaluate information (just because it's a "clinical study" doesn't mean it's good data!) and ask the right questions. I think we see eye to eye on the big things, and to get to that common ground misinformation and misplaced hostility will get us nowhere. Thanks for reading.

Anonymous said...

Haha I just now read your profile. The "scientist" bit made me curious so I Googled your name and found your website. Now I feel sheepish in some respects -- a lot of my post was written with a lay-audience in mind. None the less, I hope you do consider what I've shed light on about why docs do the things they do, and especially the parts where I've tried to remind you that we're (nearly) all caring human beings. I sense a lot of mistrust in your post, but I think you're extending judgement to health care providers in general unfairly. Did you ever consider that no matter how many people write about their negative experiences with doctors, there are FAR more people who had great ones? There are millions of patient-doctor encounters every year. The minority who had run-ins with incompetent asshole doctors/nurses/etc. will be more likely to speak their mind or tell you about it. If you saw your doc and everything went well, would you tell your best friend? Now how about if the doctor did something absurdly rude to you? In that case, you're not telling just your best friend, but your co-workers, your siblings, etc. Okay, I've gone on long enough. Thanks again for reading.

Unknown said...

I am grateful for your thoughts, thanks for sharing. I don't know if you saw my recent posts on my hospitalization but they only served to further enforce my thoughts. Plus I know several people going through cancer treatment, or various other procedures and they are getting very poor treatment as well. It's an epidemic! I am sure that there are many good docs out there, and I hope that these experiences such as mine that you read about will encourage you to be the best most compassionate doc you can be! and take time with patients. Read up on blogs to see what patients go through... my blog is of course just my personal experiences, my rants against the "machine" so of course they're not journalistic totally neutral reporting... :) Anyway thanks again for commenting and reading! Hope you get this reply.