Tuesday, October 1, 2013

Why is Informed Consent Important?

Why don't you just listen to your doctor, s/he did go to school for many years and they know what they're talking about!  If it wasn't safe, the doctor wouldn't have prescribed/done/said it.  Why don't you just leave the researching to the doctor?

Many of us have heard these questions over and over again and it can be frustrating when you're met with these questions after sharing a story of "misinformed" consent or forced medical care.

Informed consent is important for a number of reasons.  We should have all of the necessary information regarding risks, benefits, alternatives, etc before consenting to any procedure or treatment.  I talk about this a lot with regards to pregnancy and childbirth but this transcends beyond the maternal healthcare field as well.

Doctors, nurses, PA's, etc all do go to school for many years and they often do know what they're talking about but they are human beings and human beings make mistakes.  Sometimes doctors do not go to continuing education courses to learn updated information, sometimes providers have heard anecdotal stories from peers or have experiences outside of the norm and develop a bias that causes them to disagree with current evidence-based practices, sometimes they just aren't familiar with something and give inaccurate information based on guesses and assumptions, and sadly, sometimes they're just following the money.

Nobody is perfect- including those who work in health care.  They may talk big sometimes but don't let their confidence fool you, sometimes they are just dead wrong.

Dr. Google can be a very bad thing for some people.  It can often be fuel for people with Munchhausen's as well.  I agree that your typical hypochondriac probably should not Google their symptoms but for some of us, it has been a lifesaving resource.  I diagnosed my sons medical conditions before the doctors did- without me advocating for him, he would not be receiving the treatment he is today.
Photo courtesy of The Soft Landing

Of course, this doesn't mean you should never trust a doctor but a good, trustworthy doctor will always give you the information you need to make an informed decision.  If you ask a doctor for statistics, drug risks, or evidence to back up a claim and they "can't" or won't give the information to you, you cannot trust that doctor; fire them.

Last week, I visited a local emergency department for the worst migraine I've ever had.  I went to the E.R. with hopes that they would actually look into why I'm having these debilitating headaches- instead, they just offered treatment and then sent me home.

I was happy to feel better, however; before obtaining the treatment, I notified the provider that I was breastfeeding my 7 month old and that all medications would need to be safe- especially since my little one does not regularly take bottles and I was unsure as to whether or not he would take one for me.  Plus, I only had 8 oz of expressed breast milk and preferred not to introduce formula when I didn't have to.

She said she would let "them" know and disappeared.  A nurse came in to start an IV and some meds to treat the migraine.  While she was prepping the IV, long before she even added the drugs to the bag, I confirmed that they were not contraindicated for breastfeeding.  She said they were fine and explained what each was for: Benedryl to help calm and relax me, Toradol for the pain, and Compazine (she used the generic term) for the headache.  She explained that Compazine is actually an antiemetic but has an added benefit of helping with headaches- much like my son's hydroxyzine for his allergies also works to reduce his nausea even though it's not the actual purpose of the drug.

As I was in no condition to verify these things on my own, I was relying heavily on the staff to provide me with accurate information.  I nodded and let her go about relieving my pain as my mom sat along side me with my infant and toddler.  She had come with me so that I could breastfeed the baby as needed.

Shortly after the nurse left, a PA entered and introduced herself and let me know that I would be unable to breastfeed FOR 24 HOURS.

Confused, I told her that I'm fairly certain that I received Toradol after my c-section and I was definitely breastfeeding then.  Surely the nurses in the Mom & Baby unit weren't giving me something unsafe?!?!  She said that both the Toradol and the Compazine were not safe while breastfeeding.  Panicked, I insisted that I had been previously told that these drugs were fine.  She rushed off to double check while my mom packed up to bring the boys home and wait for my older children to get off the school bus.

I spent the next, actually, I have no idea how long it was but it felt like an eternity, alone in that hospital room experiencing the scariest drowsiness/grogginess ever.  I was in a state of sleepiness where, for whatever reason, I was fighting the sleep because every time I drifted off, I woke up terrified.  I've had Benedryl and Toradol before so I suspect it was from the Compazine which has a laundry list of scary side effects that I was never counseled about.

When the PA returned, her new claim was that I would not be able to breastfeed and would need to "pump and dump" for 48 HOURS!  This was even worse!  She did say that the Toradol was fine but that it was the Compazine they were worried about.

I told her, that I wish I had known this before they gave it to me.  I would have refused treatment.

She went on to say that it was "category C" (a pregnancy categorization) and that it the risks were unknown.  I told her that if I would attempt to give him a bottle but I may have no choice other than to breastfeed him and I made it quite clear that I was not happy about this situation.

I came home and called the Infant Risk Center because they offer evidence-based information regarding breastfeeding and medication as per Dr. Hale's findings.

The person I spoke with said it is classified as an L3 (the proper lactation category) because the risks are unknown.  She then went on to explain that Dr. Hale says it peaks in the breast milk between 4-6 hours and that based on it's half life, half of it would be eliminated from the breast milk within 8-10 hours.  She also said that the quantity that passes into breast milk with one dose of Compazine is expected to be very low and that if I were to nurse my son, she recommended that I wait at least 8-10 hours.

I was able to get my son to take a bottle for the next 10 hours (thanks to some donated milk from a close friend) but at 11:58 p.m., he was unwilling to take another bottle so I had very little choice and was left having to nurse him despite the lack of safety studies on this drug.  I had to nurse him again at 5:00 the next morning and throughout the rest of the 48 hours as he kept pushing the bottle away, making it clear that he wanted nothing to do with it.

I find myself upset with the fact that I was misled and put in a position where I had to nurse my son and hope for the best that the medication would not harm him.  I do not believe anything malicious took place at the hospital but it is imperative that hospital staff (and all healthcare providers) be properly educated when it comes to breastfeeding and that mother's be presented with all of the information so that they have the option to refuse care if it conflicts with their child's ability to eat.

The nurse should not have been so quick to say it was safe if she wasn't sure.  There is no shame in double checking if she didn't know the answer.  Since she was very quick to answer, I assumed that the first provider had done her job in making sure the meds would be safe. What was more aggravating though was that the first provider came in with the PA and when I objected to having to wait to nurse, she said, "no, it will definitely affect the baby" in a tone that felt almost accusatory- as if I were crazy for expecting to be able to feed my son even though she was the very first person I notified that I was breastfeeding.  She knew and it appeared as if she had done nothing with that information.  On some level, I do blame her since I told her that it was likely that my son wouldn't take a bottle and the PA seemed surprised at this so, at the very least, the PA was not aware of the importance of a safe medication.  She did, however; know that I was a breastfeeding mom before she walked into my room because it's in my chart so I will never understand why that specific drug was ordered in the first place.  A booby trap perhaps.

I did not give informed consent in the E.R.  I couldn't have as I was given inaccurate information and I can only hope that that it wasn't done on purpose for my benefit because I would have gladly continued to suffer through the migraine if it meant I could safely feed my little guy.

This is the very reason why informed consent is important and why we should be in control of our healthcare choices.

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