Why does the concept of advocacy haunt me?

I don't know why, but I continue to struggle with the concept of advocacy. I just can't seem to find any peace. I know that advocating for yourself does not mean diagnosing yourself. It doesn't mean being more knowlegeable than the doctor. It has to do with knowing your limitations, and communicating your needs in an appropriate manner.

I came across this old, from 3 - 4 months ago, piece of writing, but I'm still struggling with it. Maybe putting it here will help.

One of the issues I've struggled with over the last year is the concept of advocacy. In other forums, I've been attacked on the issue of “properly” advocating for myself during the birth. My last two counseling sessions, we’ve worked on this issue. Trying to eliminate / mitigate the shame I feel when I’m reminded of this attack, but it’s left me with a lot of questions.

I've struggled to figure out where I failed, or even if I did fail to advocate for myself. Did I set myself up for the experience that I had? Is it now a requirement to become educated in the most obscure pregnancy complications before setting foot in a hospital? Are the doctors, midwifes, and nurses no longer responsible for educating their patients? Does a care giver only need to provide answers to the questions their patients ask, or should they offer up more information? Whose responsibility is it to initiate the communication between a doctor and a patient? Is it now the patient's job to ferret out the details of their own health? What about when a patient is unable to advocate for themselves? Does that mean that the doctor is free to do whatever they wish with no thought for the patient? Is it okay for the health care providers to intentionally avoid answering questions? Is it okay for them to sneak medications or perform procedures when the patient's view is completely blocked without notifying the patient of their intent? Is it now the responsibility of anyone supporting the patient to provide the patient with a blow-by-blow account of everything going on, so that the patient can effectively advocate for themselves?

Looking back, I did a pretty darn good job of advocating for myself when I was aware of what was going on. I was handling the pain really well, but my blood pressure was skyrocketing. I knew that we had to bring it down, or I’d end up with a c-section. When the doctor suggested the epidural, I thought okay. I can try it, hope that it lowers my blood pressure, and end up with a vaginal delivery, or I can choose not to have it, and end up needing it anyhow for the c-section. It seemed like a pretty smart move to try it, and see if it would work. However, the anesthesiologist disagreed with my doctor’s suggestion. When he asked if I wanted it I said, “Yes, the doctor wants to try it to bring down my blood pressure.” He gave me song and dance on the risks of epidurals. I was lectured on not using it for anything other than pain relief. I was unwavering in my insistence that he give it to me. I went toe to toe with him while the contractions were coming right on top of each other. They pass the stupid things out like candy, why on earth was he being so stubborn? I finally lied. He knew I was lying, but he caved. It’s kind of hard to dispute pain with a laboring woman. Ultimately, I was successful. I understood the severity of the situation, and I was willing to go to bat for my decision. I also successfully advocated for myself during the pushing stage. I knew there was something prohibiting my daughter from descending, and I asked for assistance. It turns out her head was crooked. I might have been able to do it myself in a few more hours, but I was exhausted. It was a relief to have them assist me with the vacuum, and have the pushing stage be over.

The problems arose when the medical staff chose not to provide information. I was surprised when I received my medical records to find that they had been giving me IV blood pressure medication during labor. It seemed so odd to me because they were very precise when giving me oral medication to tell me exactly what each pill was. They lined them up in the little paper cups. “This is your thyroid medicine. This is your allergy pill. This is the stool softener. This is…” You get the idea. Why is it okay to not tell a patient that you’re putting medicine in the IV if you have to tell them exactly what you’re giving them orally? Shouldn’t the same standard be applied? What about notifying patients before performing invasive procedures? The doctor chose not to tell me that the placenta was stuck. I was just the patient. Why would I need to know that there was a problem? He thought he could be a hero. I had a difficult pregnancy. I’d been plagued by complications. In some ways I can see where he thought he was “doing me a favor” by not having me face another one, but I probably wouldn’t be here today if he’d shared the information with me. Especially since his efforts failed, and in failing he exacerbated the situation. The rate of hemorrhaging increased because he tore the umbilical cord off the placenta, and we think this might have caused the uterine inversion. His attempt to manually remove the placenta caused so much pain because the epidural didn’t work that I couldn’t comprehend what was happening. I couldn’t advocate for myself through the pain because I couldn’t find my voice. Instead of screaming, I clammed up. My brain was compromised by the hemorrhaging. It was too busy keeping me alive to send the right signals to my mouth to form questions. It was like someone took hold of my throat, and wouldn’t let any air through it. Even when the doctor did try to explain what was going on, he spoke to the room in general while focusing on my hoo-ha. He didn’t try to get MY attention. He didn’t come up to my face, and speak to ME. There was no effort to have a nurse re-explaining it to me or my husband. There was no discussion of how to deal with the problem, he simply announced, “I need the surgical team.” I didn’t know why. I didn’t know the name of the procedure.

The secretiveness didn’t end there. When I came out of surgery after they re-installed my uterus, managed to remove the placenta, accomplished getting the uterus to contract back down which stopped the bleeding, and restored my blood pressure to a reasonable pressure, the first thing I asked was, “what happened?” I can understand my husband not being able to tell me. His fear was so great the he couldn’t comprehend the doctor any more than I could. He told me he’d get a nurse to explain it since the doctor had already left. The only thing she told me was, “you had a lot of bleeding”. They didn’t tell me what procedure they’d performed. They didn’t tell me why they’d performed it. They didn’t tell me how serious it was. They didn’t tell me it could happen again. I have to admit that while I attempted to advocate for myself at this time, I didn’t do a good job. I was so weak from the blood loss that I didn’t even think to ask all of the questions I should have, but they knew how severe the situation was. Why should the responsibility be placed on the patient to question them when they know how compromised the patient is? Should they really be able to fall back on the, “well you should have advocated for yourself” excuse? Where does the patients responsibility end and the medical community’s responsibility start?

I keep coming back to the need for good communication in order to be a successful advocate. There has to be a level of trust and honesty between the caregiver and the patient. The patient needs to answer questions honestly, listen to the recommendation, and ask questions if they don't understand or want more detail. However, the caregiver needs to do the SAME thing. They need to ask probing questions. They need to listen to the patient's verbal and non-verbal cues. They need to answer questions honestly. They need to explain why they're making this specific recommendation. They need to speak to their patient, and not the room in general. They need to recognize that their patients are autonomous, individual, and unique. They need to recognize that what works for patient number two won't work for patient number four. They need to realize that we each have different ways of analyzing risk, and they need to be honest about their doctoring philosophy. They need to be trustworthy.

Trust is difficult to build. It takes more than having a patient pee in a cup, get their blood pressure taken, measure a belly, and listen to a heartbeat. It comes from initiating difficult discussions. It comes from asking questions. It comes from giving honest answers. It comes from being open. It comes from not making assumptions. It requires open and honest communication. However, it helps everyone get through a difficult situation.

There was no good communication on the night of my daughter's birth, and this resulted in a failure on my part and their part for me to advocate for myself.