Disclaimer: This is a blog. Do not construe this as medical or legal advice.
In the unfortunate event you or a loved one end up in the hospital, I hope you receive excellent care from compassionate providers who respect your medical wishes. If that’s not the case, this one’s for you.
We moved to Alaska because it symbolized ultimate freedom and opportunity. The last frontier, promising adventure and reward to those with enough courage and self determination.
Freedom.
This post is not meant to be political or polarizing.
Never did I think the basis of all of our freedoms, bodily autonomy, would be so threatened by the very authority figures whose duty it is to protect it. This is my own personal account of the sad state of medical oppression in hospital settings, and lessons learned on how to best advocate for yourself when you find yourself at odds with your care providers. Especially during COVID.
When I was in labor with my first child, my daughter, I had planned on giving birth at a local birth center. I wanted an all natural, drug free birth with minimal medical interventions. Unfortunately, my labor was slow to progress, and I ultimately needed to be transferred to the hospital. When I got to the hospital, I was railroaded with intervention after intervention, the first of which could have been argued as questionably necessary, but each of which caused additional interventions to become absolutely necessary. Each drug begat the need for another monitor, which begat the need for another drug… Early in the process, I questioned the medical necessity of a set of monitors, and for this I was presented with an AMA (Against Medical Advice form, which basically says “if you don’t do what the doctor says, the hospital is not liable for any negative outcomes,” a fair statement, but also usually reserved for cases where there is no other alternative). I did end up consenting to those monitors after further discussion, but what felt like a fight to advocate for myself never relented. Ultimately, after four shift changes through four different doctors, I was able to deliver my baby without surgery and everyone went home healthy (though that is not all that matters).
+Lesson 1: If you don’t understand, keep asking questions. Ask for someone else to explain something to you if your doctor is unable or unwilling.
+Lesson 2: You can always say no. Even if the doctor doesn’t like it. Ask for an AMA form if you absolutely do not consent. Ask for another doctor or care provider who can help to find other solutions. Do know that saying “no” can come with consequences (negative health outcomes, termination of active care, etc.)
+Lesson 3: Trust your gut. If you feel like your care providers are using scare tactics to move you down a treatment path you are uncomfortable with, stop and ask questions if possible.
Fast forward to my second labor. Again, I had planned on a drug free birth at the birth center. Again, despite being further along in the process this time, I was transferred to the hospital. When I say further along, I mean I had already labored 40 hours and was at the pushing stage. But, despite having the intense urge to push with my contractions, my body wasn’t ready to deliver. Now this was January 2021. COVID had the hospital on high alert. Despite my midwives having called ahead to clear me into the building, despite being told everything was going to go smoothly with the transfer and that there would be someone waiting for me and my husband to escort us to our room, despite the hospital having a policy protecting laboring mothers from needing to wear a mask, when we arrived at the ER entrance to the hospital, we were not allowed past the outdoor COVID screening booth. I was holding back pushing, which was the hardest thing I have ever physically had to do. Imagine stopping a bodily equivalent of a runaway freight train with nothing but mental determination. It was all I could do to pick a spot to focus my eyes on and breathe until each contraction passed, trying to hold back the overwhelming, all-consuming urge to push, or risk damaging myself. At some point, I was put in a wheelchair. At some point, we forged on ahead to get to the maternity ward that was supposed to be expecting us. At some point, the young man from the screening booth followed us then forcefully held a mask over my face while I was struggling to breathe. At some point, they tried to kick my husband out. At some point, they told me they were not going to file a request for an epidural (medically necessary at this point) until I “consented” to a COVID test. I told them I did not consent. At some point, I did what “had to be done” to get the request for the epidural filed. At some point, they turned off the in-room HEPA air filter. At no point did the nurses make any accommodations or relent in their hostile attitudes toward my husband. At no point did I ever feel truly safe. I was a mother, giving birth, being treated as a prisoner. After eight hours, like a bright comet streaking across a sky of darkness, my son was born. In the hours that followed birth, after all of our struggles, the nurses began implementing further restrictions on me now that I was no longer “in labor.” I was told I was in their system as a “difficult patient.” I requested to be released from their care as soon as possible. When they told me it would likely take all day, and I asked what authority they had to hold my family, they told me they could call CPS for child endangerment if we took our son home early. My husband ultimately got the doctor on the phone early, who agreed to release us.
+Lesson 4: Do not, at any point, forget that you are in charge of what happens to your body and your babies (if applicable). If you do not consent and you fear coercion, put it in writing. In fact, get everything in writing, when possible. What happened to me was a violation of my consent and bodily autonomy.
+Lesson 5: Know what COVID restrictions you are up against, and especially do not let them take away anything you are explicitly allowed. Realize when you are entering into a situation where your consent may not be valid (under medication, periods of unconsciousness, etc), and advocate to be allowed to have a support person in the room to assist in making your medical decisions. Know that your medical rights supersede whatever restrictions or ordinances are in place.
My son was born with club feet, and developed other complications in the days following birth. Because there is no pediatric orthopedic surgeon in Juneau, and because we didn’t want to leave the State of Alaska when they were imposing COVID interstate travel restrictions, we had to relocate our family up to the Anchorage area for the first three months of my son’s life. At three days old, he got on a plane. My body was still so swollen, I could hardly fit into my house slippers. His medical story is a long one, and I won’t bore you with all of the details. In short, on the evening of our travel day to Anchorage, my son developed severe jaundice and would not wake up. An ambulance ride and an ER room later, we found ourselves admitted back in a hospital up north. They COVID tested my three day old son without our consent, without even asking. When he was admitted, he, my three day old son, was only allowed one support person, which had to be me since I was nursing him. Incidentally, he was also not allowed to be left alone at any point, even if he was sleeping, which meant I was never allowed to leave the room. We were put in a labor/delivery room with no windows and no clock, where we stayed for days. I was on a strict 2 hour nursing schedule as part of my son’s treatment plan, which effectively meant I wasn’t sleeping at all. I began struggling with my mental health, but feared if I expressed this to the nursing staff, we would be separated. My husband continued to advocate from the outside. He, too was a mess. Unable to see his infant son, who was unresponsive the last time he was able to hold him. Eventually, somehow, I struck a deal with the night nurse to come watch my baby for 5 minutes while I stepped outside to see my husband and hug my daughter in the parking lot. Those 5 minute steals away to the rental car reinvigorated me with life and hope to keep up the fight from inside the windowless dungeon.
After a few days, we were transferred to the med-surge unit because they needed the room we were taking up in labor/delivery. The first nurse I got in this new unit was, I am convinced, an angel from heaven. Like a breath of fresh air compared to all of the negativity we had been dealing with for the past week, he actually commiserated with our situation. Let’s call this man Nurse Bob (I don’t want to get the real person in trouble). He’s important later. Also contributing to the lightened mood of room-transfer day was the huge window, which let in much needed daylight I had not seen since before being admitted to the hospital. I then realized that I was neglecting my own postpartum medical care, and that the hospital, by it’s own policies, would be forced to let my husband and I switch places while I left for a medical appointment. The father would finally be able to see his son. The hospital staff definitely were not fans of this, especially since my daughter had to come with my husband, but had no choice but to let it happen. When my husband and daughter arrived, Nurse Bob, with a wink of an eye, let us linger in the room together before the swap was completed. Finally, we were all together.
When I came back from my appointment, I had expected my husband and daughter to be required to leave immediately. But instead, my husband got comfortable. He was not going to give up gained ground that easily. While I was gone, he had a chat with Nurse Bob, about how he, as the father, has equal say over our son’s medical treatment, especially with my impaired mental health at this point, and how being isolated outside the hospital from an ever evolving medical situation does not give him the full picture to be able to give informed consent. Nurse Bob knew who to talk to up his chain of command. Magically, my husband was granted special permissions to be allowed in the room. Thankfully, my mother flew up from the “lower 48” to help us through all of this, and was able to watch our daughter while we stayed in the hospital with our youngest.
+Lesson 6: If you need a policy exception granted, ask for the “Hospital Administrator.” In most cases, it is the Hospital Administrator who is in charge of carrying out policy at the hospital. This is the person who holds the magical power to grant exceptions to COVID restrictions. Don’t let hospital staff mislead you or shuffle you around to Charge Nurses, or even Doctors. Ask for the Hospital Administrator.
+Lesson 7: Look out for your own angels, and angles of opportunity. Sometimes all it takes is drawing a half a fish in the sand, saying the right thing to the right person. Know your rights and what cards are in your hand, and do not be intimidated by bullies.
+Lesson 8: If you feel you are being kept longer than necessary, never stop asking questions. Ask every single doctor you see for an update to your care plan. If the nurses tell you the doctor is busy, keep asking repeatedly. Ask detailed questions about your care plan. Ask to look at any recent test results, if you know what you would be looking for. If you feel like you are being given the run-around at the benefit of the hospital, begin considering legal action, and let them know this.
+Lesson 9: Keep your thoughts processing and your emotions flowing. Please please please continue to communicate to someone “on the outside.” Journal if you need to. Don’t let negative thoughts or emotions build up or stagnate into some bio-hazard swamp in the back recesses of your mind. Your mental health is more than half the battle. If you have a loved one in the hospital, call them at least daily (preferably at every meal time if you are their main contact), and try to make an effort to talk about how they are doing mentally. The hospital is a whole new monster during these COVID times.
The first few months of my son’s club feet treatment involved weekly visits with the orthopedic surgeon to stretch and wrap his feet/legs in soft casts. Each week, the angles of his feet were gradually adjusted with a new set of “soft” casts that extended from his toes all the way up to his upper thighs. My newborn baby was hard and scratchy from the waist down. But it was to give him a better future. And each week, in the early morning hours of appointment day, I would remove his casts, give him a bath, and share extra soft cuddles with him before toting him back to the surgeon to put the next set of casts on.
My husband is an amazing father. And as such, he is very involved and deserves to be treated as an equal parent. He certainly has every right to be just as involved with his children’s medical care. It is very frustrating, therefore, when doctors assume that the mother is the “primary” parent, and neglect to provide the same level of information/patient education to the father. Our biggest encounter with this issue did not come from the doctors, however, but the screening staff doing temperature and mask checks upon entry to the hospital lobby. We had traveled up to Anchorage for this treatment and were living, as a family of four, out of a hotel. We had nobody. No family, no friends, and no babysitter (my mother having returned back home). A great deal of the treatment for club feet relies on proper parent education, as the real treatment happens over the course of time at home, not in the 15 minute doctor visits. So when we were repeatedly harassed about the number of “support” members attending my son’s medical appointments by hospital staff whose job it was to scan our foreheads, ask us standard screening questions, and provide us with masks, we were frustrated, to say the least. However, having fought tougher battles very recently, our frustration manifested in calm and confident assertiveness. Often times, just confidently saying “No, both parents need to be in the appointment, and our toddler can’t wait in the car,” was enough to help the staff realize what they were asking was inappropriate, and ultimately a detriment to our son’s medical care. In one instance, a woman would not relent with accusatory questioning, at which point we just went to a different screener, who let us through with no issue.
+Lesson 10: Stay calm. When it comes time to stand up for yourself and your medical rights, you may be feeling a lot of intense emotions. Take a deep breath, uncurl your toes, unclench your fists. Find your inner confidence, and speak from a place of dignity and sovereignty. Be respectful and assertive. Do know that your doctor may have the right to decline you care. Ask for another one if needed.
At the end of three long months of cast after cast and orthopedic treatments for my son’s club feet, a very minor surgery was necessary to complete the first stage of treatment. This surgery is so minor, in some cases, the doctor will do it right there in the doctor’s office. My son is a very big and strong boy, however, so the doctor preferred to do it in a surgical setting in case he needed to put him under anesthesia to hold him still. However, again, the hospital wanted to COVID test my infant son. As a family, we had had enough. We said no. He was at extremely low risk, we had been isolating in a hotel room for three months, we had been interacting with the surgeon weekly up until that point, and it was not in the best interest of my family, as it would prohibit us from flying home if it were a false positive. We requested the hospital take whatever necessary precautions they would take if he were positive (as they stated a positive result would not stop the surgery), and declined the test. They took about a week to get back to us on that request. Their reasoning being “if we did this for you guys, we’d have to allow this option for everyone.” (Well, duh, you should be doing that anyway.) For one extremely stressful week, we did not know if they were going to allow the surgery to continue without a test. We didn’t know if the past three months of treatments, of living out of a run-down extended stay 400 miles from home, was going to be all for naught. He would surely fully regress without the surgery, which would mean starting the entire three month process over again, likely for longer. We began calling surgeons down in the lower 48, just looking for someone to make an exception, and were coming up empty handed. Interestingly enough, most surgeons we talked to (including our own) understood and wanted to help us, but were prevented from doing so by hospital administration policies. At the peak of this week of stress, our very marriage came into question, as we realized when push came to shove, we had very different–and very strong–opinions on what should be done if we got denied by our current surgeon. Ultimately, thankfully, they allowed the surgery to proceed. Beside getting some snarky comments from the nurse, the surgery went remarkably well, and my son didn’t even need anesthesia (the whole reason they wanted to test him to begin with).
+Lesson 11: You always have options, but you may have to find them yourself. Offer creative solutions to your care providers when appropriate.
+Lesson 12: Do not give in on your convictions to appease others. Yes, be flexible and open minded to unexpected changes that happen with evolving medical situations, and have those conversations with your doctor. But do not let anyone try to sweat you out or coerce you into medical decisions you don’t want. Call their bluff.
I hope my deep dive into my recent medical experiences is helpful for you. Please feel free to share this with your loved ones. God forbid anyone find themselves in similar situations. During these unsteady times, stay healthy, and stay free. And remember: Your medical rights trump any policy in place, including your right to informed consent. Rights cannot be taken away, only waived (i.e. given away voluntarily) or violated. Let this knowledge inspire you to stand strong in your convictions and against medical coercion.