posted
Well, I got flamed on the colon cancer email support group that I joined and while I'm not surprised, I'm wondering what the intelligent, thoughtful crowd at hatrack thinks.
Situation: A woman posted that she was very angry with her doctor's office because her husband was on the same regimen I am, 5-FU, Leucovorin, and Oxaliplatin (abbreviated FOLFOX) and they neglected to tell him that oxaliplatin caused a rare side effect that made your throat tissues swell if you drink anything cold. She says he drank some cold milk and was frightened and thought he was dying.
She complained that she had received no education about the chemo drugs and was incensed that a nurse didn't warn them about the potential side effects.
I responded that I felt very bad about what happened, and that I had experienced the same side effect and it was disconcerting and I hoped her husband was okay. Then I went on to say that I was a big believer in patient empowerment, and situations like this are why I always urge people to read up on what drugs they're being given, and check out potential side effects and interactions and not rely solely on what the medical staff tell them because nurses and doctors are just people after all.
I suggested that the nurse might have thought the doctor had already told them about the side effects. She may be unused to oxaliplatin and not as familiar with its side effects. She may just have plain forgot to mention it in the hustle and bustle of her busy routine. It happens.
Well, that didn't sit well and I got called all sorts of names and how could I be so callous and cruel and how dare I suggest the patient should have to responsible for part of their own medical care. I left the group, because it was no longer a supportive place but I'm curious what you guys think. Not whether or not you think I was out of line for the group (I think the woman over-reacted, but hey, her husband has cancer and she's frightened and I'm not going to judge her. I emailed her directly to say I was sorry if what I said hurt her feelings but she only responded with more vitriol, so I just figured it was best if I left) but whether or not you think there is a burden on the patient to take some responsibility for their own healthcare.
I mean, I never take a drug without researching it. It's not because I don't trust my doctors, it's because I know that no one has more interest in my health than I do and it's imperative that I am involved in my own healthcare. I would not, like this woman and her husband, have shown up to chemo without knowing what side effects to expect. I would have stopped the nurse and asked her what she was giving me and what I could expect. This woman and her husband never even asked the question.
When I studied health and medical communication we focused on how much of the population, even those that are literate, are functionally medically illiterate. They can read what's on the prescription bottle but they don't understand it. Much of patient non-compliance comes from them not understanding what is going on and not asking enough questions and getting information about their condition and treatment.
So, should the medical community bear the burden alone, or does the patient need to have some responsibility for their own health?
Posts: 14428 | Registered: Aug 2001
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posted
Well, personally, I just can't imagine ever being given anything by a doctor and me not immediately doing my own research on what it is. I mean, that is just the kind of personality I am (as you are).
But I realize there are all types of people out there.
So I have always felt there is personal responsibility involved. But I don't know if there is a right/wrong answer to your last question.
posted
I think patients definitely SHOULD learn as much as they can. I mean, aside from side effects that doctors may fail to mention because of their rarity (I once took a medication that caused my eyes to refuse to focus...while I was driving on the highway), a lot of times if you have a choice of medications, doctors don't really know what YOUR concerns and preferences are. I think this happens a lot in psychiatry. Doctors have a "favorite" anti-depressant, and they like to prescribe it by default, but it might have a higher risk of some particular side effect that you find unpleasant than another drug.
I definitely feel like patients need to do research and ask lots of questions, especially when being treated for something so serious.
We were talking about thyroid cancer in business ethics. Apparently, doctors always tell patients to get radiation treatment after surgery even though the radiation is only helpful and needed in a fraction of cases. A lot of it is because doctors are afraid that later on, they will be accused of not having done all that they could have if something goes wrong.
So yes, I really do think that patients need to take responsibility for their care. Doctors are human, too. They don't know everything. Or they might not mention something because they don't think it's relevant...and it's something that you would have desperately wanted to know.
posted
My gut reaction says that the doctors/nurses/pharmacists SHOULD tell you what the side effects are verbally or on the prescription packet respectively. But since they don't always do that and they are human, then the patient MUST also be responsible.
So I would put the responsibility on both sides--the professional AND the patient.
Some doctors really do foster that ignorant dependance, though. When I went to a back doctor, when he was done he said he was going to have the nurse give me a shot, and then he was walking out the door. No explanation of what it was or what it was for. I stopped him and asked him what it was and why I needed it. He told me, but seemed surprised that I asked. Later, I heard him say the same thing again without any explanations to another patient. That patient didn't object, but I'm sure he was curious.
Posts: 2880 | Registered: Jun 2004
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posted
I think that people definitely need to take a part in their own medical care. It's the mentality that predominated in my upbringing. It boggles my mind when people don't know what medications they've been prescribed or what they're for or haven't done any research into their own physical problems and treatment. As far as I'm concerned it is MY body and MY health - I try to learn as as much as I can about what's going on. I go to a doctor because they have greater knowledge and better resources that I do about dealing with the human body in general.
It would take quite a while for a doctor or nurse or pharmacist to tell you EVERY possible side-effect of any one medication. It is really difficult to predict which of the possible side-effects someone may get. Heck, taking birth control pills raises my cholesterol quite a bit - not something mentioned as a common side effect in accompanying literature - yet this has been verified in me twice.
I am in favor of asking for the pharmecutical inserts when you get your medication (or at least reading the abbreviated sheets that may accompany it), doing research on your medications and illnesses, and talking with your doctor about these things. I will not see doctors that won't have discussions with me about my health. I learn all kinds of interesting things from my doctors all the time (seratonin receptors are related to nausea receptors, cortisone can cause skin bleaching, silver nitrate may be a poison but it also staunches bleeding, bone spurs often occur at trauma/hairline fracture sites, etc.) and I like knowing more about how my body works.
Posts: 5879 | Registered: Apr 2001
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posted
I'm pretty healthy overall, but I've never taken a shot or any medication without asking what their express intention is, and reading the side effects.
Posts: 5462 | Registered: Apr 2005
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posted
I would think that it would be the doctor's responsibility to talk about side effects and not the nurses job at all. But I don't know much about oncology nurses.
Posts: 1014 | Registered: Jul 2005
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posted
I'm in complete favor of knowing all about what is happening.
However, I think part of the medical staff's responsibility should be to make sure the patient has all the literature and has access to all the possible side effects. There's no need to say all of them every time, but if the patient was never given a list of side effects, then I do think it could have been done better.
The health care providers have the information. As the holders of the knowledge, it's their responsiblity to make sure the patient does too.
Posts: 26077 | Registered: Mar 2000
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posted
As long as the FDA withholds our access to certain medications save through a medical liason such as a doctor, I believe the medical community should be fully responsible for providing patients with all the necessary information.
(note: I don't think your advice was out-of-line, but rather the system is flawed and if we don't hold those in privileged positions accountable in terms of the effort/money/trust their obtained information and services require, there could be troubling consequences)
Posts: 484 | Registered: Feb 2006
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quote:Originally posted by Katarain: My gut reaction says that the doctors/nurses/pharmacists SHOULD tell you what the side effects are verbally or on the prescription packet respectively. But since they don't always do that and they are human, then the patient MUST also be responsible.
So I would put the responsibility on both sides--the professional AND the patient.
Agreed 100%.
However, the balance shifts more to the medical staff, IMO, when the patient is sick enough that they are not realistically able to "do their homework." (Yes, I am still a bit bitter about the doctor that did not ask if I might be pregnant before giving me a strong antibiotic.)
Posts: 32919 | Registered: Mar 2003
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posted
I think it is a question of power. The doctors have the information and the experience - they have the power of knowledge, and the onus of responsibility to do the best for the patient.
The patient has the power of compliance or noncompliance, and the ability to research knowledge that may or may not be available.
The health care staff has tons more power in this situation. In that case, they cannot escape the responsibility.
Posts: 26077 | Registered: Mar 2000
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posted
Y'all are using the word medical staff. Is that physician, or is that doctors + nurses?
Cause doctors are trained to choose the drug. Nurses are trained to hook up the IV and administer the drug, while watching for immediate side effects. Whether oncology nurses have training on the multiple side effects a person can have after she walks out the door, I justdon't know.
Posts: 1014 | Registered: Jul 2005
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posted
Wow, Belle, I'm sorry you had to go through that.
quote:I responded that I felt very bad about what happened, and that I had experienced the same side effect and it was disconcerting and I hoped her husband was okay. Then I went on to say that I was a big believer in patient empowerment, and situations like this are why I always urge people to read up on what drugs they're being given, and check out potential side effects and interactions and not rely solely on what the medical staff tell them because nurses and doctors are just people after all.
I suggested that the nurse might have thought the doctor had already told them about the side effects. She may be unused to oxaliplatin and not as familiar with its side effects. She may just have plain forgot to mention it in the hustle and bustle of her busy routine. It happens.
This is a touchy fact pattern which arises in a lot of situations. You offered advice on how the person could avoid such situation in the future. You also gave a hypothetical fact pattern that might explain how this happened - useful information for someone who doesn't want it to happen again.
Someone leapt from "If you do X, the chances of Y happening are less" to "You didn't do X, so it's your fault Y happened." It was unfair of them to do that.
There are some situations where giving advice is inappropriate. A mesaage board which should be at least partly about coping with a horrible situation as best one can isn't one of them.
Now, to your actual question, of course a medical professional should go over all the side effects with a patient. I don't know the intricacies of responsibility, so I'll just take Theaca's word that it's the doctor. That makes sense anyway, since it's the doctor, not the nurse, who prescribes the drug.
However, given that the doctor has a duty to share this information, I think patients have a responsibility to do research - when they can - into a drug's side effects. Every time I've gotten a drug that's administered by a doctor or nurse, I've gotten a little flier to take home with possible side effects. I still always look it up on the Internet. Now, saying I think patients should do some research on their own does not lessen by one little bit how large doctors' should responsibility for informing the patient should be.
I think a lot of this goes back to a phenomenon I've seen over and over again. Some people think blame or responsibility is finite. Therefore, saying the patient has a responsibility is seen as lessening the responsibility of the doctor.
Hogwash! There's plenty of responsibility for everyone. Posts: 26071 | Registered: Oct 2003
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quote:Nurses are trained to hook up the IV and administer the drug, while watching for immediate side effects.
I'm a nurse, and I know a little more than how to administer a drug and look out for immediate side effects. In fact, I find it to be belittling of my role to write me off as that ignorant.
As a nurse, I review all of my patient's medications, educate them on the appropriate way to take their medications (time of day, with or without food, in conjunction with or separated from other medications, and the order in which they are best taken). I instruct them on drug-drug, drug-food, and drug-herbal interactions, side effects, and signs of allergy, and I assess the medications for effectiveness. Most of my patients tell me that their doctors have never taken the time to go over all of this with them, and that their pharmacists just tell them to ask their doctors.
I'm not an oncology nurse. I am a home care nurse, and a darn good one, too.
That said, the vast majority of the patients I see are shockingly ignorant about their medications. They don't know the names of their pills or the dosages ("I take one round pink one and one oval white one in the morning, and a little square one at night"), or what they are for. And lots of times, they don't care to know. One of the first things I do, before I even lay on my stethoscope, is ask to see all the medicines in their bottles -- pills, eye drops, inhalers, nose sprays, patches, creams, and shots. Then I sort it all out. If I see a problem, I tell the patient and call the doctor.
Posts: 10397 | Registered: Jun 2005
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quote:Nurses are trained to hook up the IV and administer the drug, while watching for immediate side effects.
I'm a nurse, and I know a little more than how to administer a drug and look out for immediate side effects. In fact, I find it to be belittling of my role to write me off as that ignorant.
C'mon, I'm not talking about what an individual nurse can do. I'm talking about what's required. I'm picturing hospital nurses who give antibiotics, antipsychotics, antidepressants, blood pressure pills, and diabetic medications all day long. If I asked most of the nurses I work with which blood pressure pill is most likely to cause impotence, or which blood pressure medicines are mostly likely to cause edema or which diabetic pills are contraindicateed in heart failure, I'm betting most won't know. Or which HIV drug causes X, Y, or Z. Or which ppi is more likely to cause diarrhea. I certainly don't think that means they are ignorant. And chemo drugs can cause huge numbers of side effects. So no, I don't think I'm belittling anyone when I say this. You really think hospital nurses and infusion nurses have the time to do all the education home health nurses do (that's part of your job!)?
All I'm saying is I don't what the standard is for oncology nurses, or whose job it is considered to be at that clinic.
Posts: 1014 | Registered: Jul 2005
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posted
I've found doctors and experienced nurses to be about equally knowledgeable about side effects of stuff I'm taking-- with doctors knowing slightly more about what is conceivably possible with a drug, and nurses knowing slightly more about what most patients they see actually get.
(I've also found that doctors are more likely to look over my chart, examine me if necessary, and issue orders to a nurse, then walk out, while nurses are more likely to say, "This may make you feel..." before putting the IV in.)
Posts: 21182 | Registered: Sep 2004
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I'm imagining the reaction might have more to do with the ethos of that particular board. If people go there for unconditional support, it's possible that anything that doesn't do that unambiguously is going to sound like an attack.
Since I'm not familiar with the board, I have no basis for saying this other than a broad guess.
(and my years of Psychological research here on Hatrack -- soon to be published...thank you ALL!)
Anyway...what you said sounds completely reasonable, and some pretty sage advice. I think that taking chemo drugs, especially, would prompt a reasonable person to at least ask pointed questions of their medical team, but to also do a bit of checking on their own.
Knowing the possibilities would've at least helped the person (and their family) react more constructively, and panic less. Seems like a wake-up call for them. I can understand complaining about the medical team, too, but ultimately, this should be a call to get informed.
Posts: 22497 | Registered: Sep 2000
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kq: I agree. Nurses know far more about how injected drugs will immediately affect someone, how much it'll sting, how slowly to inject the drug, which drugs can be given at the same time or in the same IV, etc. Doctors aren't trained on that stuff at all.
Posts: 1014 | Registered: Jul 2005
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posted
I agree w/the idea that both should be responsible. I am totally w/you on the idea of patient empowerment.
In the specific situation you mentionned, since so many drink cold items (ie who drinks milk warm?), they should have warned of the potential.
I work as an occupational therapist in a nursing home. One of our nurses carries one of those palm devices for organizing your schedule. In this, she downloaded a dictionary that describes all medicines/reason for using it, side effects, etc. So if a patient asks her a question, she can immedietely access some good info.
It is frustrating that the medical community does not always provide good info on conditions. A couple years ago, I had an ovarian cyst as well as a corneal ulcer. Both were at the same time. I didn't receive any info from the med professionals who helped me. I found out the info I needed to by doing my own search. I did think it was shameful that I received no info from the doctors.
When able, it is good when people have family who can help them research their disease/medicines, esp if the patient is unable to do so, as was stated. Often there will be diseases where the patient NEEDS to help educate the professional. For instance, the Parkinson's Disease association has a whole pamplet that gives suggestions to patients for teaching professionals about their condition, ie ensuring the importance of the timing of certain medicines.
Anyway, good luck w/this.
Posts: 38 | Registered: Jun 2005
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posted
Theaca, I've found the oncology nurses to be much more informed on side effects than the typical nurse - they appear to be extremely knowledgable about the drugs they are dispensing. I've noticed each of my nurses wear ID tags that say R.N./O.C.N - I'm assuming that's some additional oncology nursing training?
At any rate, they are informing us about side effects as long as what might happen 2-3 days out. However, I agree with you that ultimately it's the doctor's job to educate you and inform you about the drugs you're taking, and my doc did that - we had an appointment that consisted of her first sitting down with us and discussing what drug regimen we'd be using, why she chose it, and what the side effects might be. Then, she brought in one of her oncology nurses to tell us about the actual logistics - where I would go, how long it would take, how the pump I'd be wearing home operated, etc.
Bob - you're right. The email list seemed to be full of people who weren't really interested in what I was interested in, they only wanted to post how bad they felt and get unconditional support in return. Nothing wrong with that, just not what I'm looking for. I wanted someplace to discuss the drugs, to discuss treatment, see if anyone was doing anything different and how it was working, see if anyone had come up with home remedies that helped side effects, etc. Wrong place for me, that's all.
Posts: 14428 | Registered: Aug 2001
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posted
Belle, do they exchange hints about how to deal with particular side effects? Because, if they do, then your post was absolutely consistent with that.
Still, it's probably best not to buck the prevailing mood of such a list. Posts: 26071 | Registered: Oct 2003
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posted
I do not recall ever having a doctor tell me about all the possible side effect of a prescribed drug. For one drug he said, "Now you don't want to take this all the time, just when you really need it, because it may cause weight gain." Well, I want to be the one to make the choice...which is worse, possible weight gain or preventing pain instead of just treating it when it happens?
Ultimately, if you want the best medical care, you need to make it your business to know what is going on and why. The first thing I do after a doctor's appointment is look up all the words and drug names at reliable web sites to be sure I understand. Then I am not afraid to ask questions as often as necessary.
It sounds like that lady on your list has a major personal problem besides her husband having cancer.
It's hard to find a list to join that is really suitable sometimes. The last one I left was because there was too much helpful information. I got sensory overload. I'm sure the ladies were accurate in their knowledge. I just couldn't deal with it at the time. But I didn't flame anybody over it.
posted
I don't recall docs ever discussing drug or other treatment choices with me unless I pressed for answers, and usually, they tend to be impatient and not entirely willing to go there. But then, for all those years I was severely sleep deprived and talking to my docs about the symptoms and how bad I felt, none ever asked me about quality of sleep, so I tend to not trust them to figure out what's going on with me.
But then, I also had a doctor when I was a teenager who prescribed ergotamine for my migraines. After three years of rebound migraines, hallucinations, delusions, and other nasty and nearly fatal side effects, I learned that the dose he prescribed for me was appropriate for a 250 lb male. I was a 150 lb female at the time. No wonder I had so many problems.
While I agree that, in the ideal world, doctors should be educating their patients on treatments, side effects, and whatnot, I don't trust that they'll actually do that.
I have made it my business to educate myself about what's happening with my own body. It's the only way I know of to protect myself from those incompetent or lazy or indifferent or too busy doctors. After all, why would they care as much about my health as I would when they don't have to live in my body?
Posts: 8355 | Registered: Apr 2003
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posted
I once had a roomie who had trouble with birth control pills, so she went on deprovera (a brilliant choice). She immediately started having problems and went to the dr. When asked about meds, she said none. After transfering drs a few times, one finally asked any chance you are on birth control? She was then so upset because her problems were listed on the common side affect list for depro and why hadn't the first two drs realized it (despite having never told any she was on it). So, I know there are a lot of people out there who take very little interest in their own health and expect their drs to take care of them completely.
Posts: 1001 | Registered: Mar 2006
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