Tonight I am the fish tank.
I’m sitting right where I was told to wait. In a small waiting room in a small hospital in a medium size city in the southern United States. A large inscription painted on an otherwise barren wall gives testimony to the idea of “patient centered care” in an inspiring font. “Patient-centered care” is a technical term that is harder to grasp than grains of sand, or dust in the wind. It is used in brochures (the google search yields about 1,700,000 results) and on bill-boards. It is tidily wrapped into inspirational sayings and painted on walls in a font that says, “whatever you feel right now, whatever your experience is right now, we thought we could be different for you but somehow it just isn’t working out that way, so you have to sit there, tortured by trying to reconcile this inspirational quote with how sore and sweaty your back is from sitting in that vinyl chair for so many hours.”
A group of staff walk down the hall and in through the double swinging doors that make a click-click-whoosh-click sound as they open by air compression and close neatly behind them. They pass me but see through me. No one nods, or smiles, or seems to be aware of me, sitting there, so close that as they pass I can smell the coffee held in balance by the one with a short white coat. I feel like a fish tank. I wonder what year are they taught to lose human decency in medical school. I start to picture the class where it is stripped away and gaze at the wall, at that saying.
“Patient-centered care” is bantered about at policy meetings at the clinic, hospital, county, and national levels. It means something different in each healthcare setting and to each provider and to every patient. The idea is wonderful of course, that somehow care can revolve around a patient, meeting them where they are at and providing clustered services to avoid duplication of tests, procedures, or appointments. Providers hope that it will mean they are doing a “better” job. Nurses hope it will be the magic cure to those insipid patient evaluations. Community-based healthcare settings hope it will demonstrate that they got it right when no one else could. Patients hope they will finally be heard and cared for in a relevant way and that they will be seen by a doctor who remembers them and cares about their well-being. I am staring at that quote, and I can’t find the truth anywhere in it.
A woman I provided prenatal care for is less than a hundred feet away in an OB triage room. To say I provided care for her doesn’t really cover what developed and bloomed over the course of her relationship-based care. She arrived in care with a non-pregnancy related health complication that threatened to fester into a full obstetric emergency. It was preventable and reversible but the model of healthcare she was accustomed to had taught her that she would not get help for it until it was pathological. Accordingly, she had put off calling anyone for an appointment. When she did call, she learned the clinic she went to for an early pregnancy appointment would not see her because she did not make a subsequent appointment for too long of an interval. She then called several other obstetrician offices and was told by all that she could not establish care because she was so far along in her pregnancy (because you shouldn’t be really pregnant and need to see an OB–and yes, this is city-wide policy). She found us and asked if we would just see her once to make sure the baby was okay. When I responded, “Yes, and we will see you and make a plan so that you can access the kind of care you prefer for yourself for the rest of your pregnancy,” she immediately scheduled an appointment. Over the next half of her pregnancy, we learned together and she embraced the process of lifestyle changes. She got support from her family. She got really, really healthy.
I worked hard to support her and ensure she felt heard and understood and had access to information that made sense to her. Over time the light in her eyes, glowing skin, and great energy were easy to see as she arrived for appointments and settled in for a long discussion. She shared her thoughts and concerns about parenting, education, birthing safely and breastfeeding. She regressed herself back down from the dangerous outcome she may have seemed “destined” to arrive at if we only looked at her black skin, her economic status, and what the data from the healthcare system has demonstrated we ought to believe.
We have accomplished the best that continuity of carer has to offer. I know she is not inherently broken or incapable of good health. I believe that time, dignity, and education make almost everything possible. I know the feel of her pulse, the sound of her heart, and the slope of her belly. I have spoken with her baby as he’s grown and promised him we would take care with his mom. I taught her daughter to use a stethoscope and a doppler and how to measure a growing uterus. I settled into the comfortable rhythm of providing care for a woman through her pregnancy. I felt proud to work with this family and so fortunate to be able to learn from and with her. We shared space where this mother understood without question that I was hers for the duration and she would never be allowed to progress to pathological anything.
Her plan all along was to birth in a hospital. In this city, unlike the one where I trained and practiced for so many years, that path is not open. I asked for help. I asked for a special pass. I justified why she deserved our care and theirs for no other reason than it was her choice. I didn’t use words like, “it is her fundamental human right to choose,” but it is. Knocking on the doors of resource-wealthy hospitals who do not support community-based providers is an abject lesson in shame and humility. There are walls everywhere. Our value to families and the value of the lives of mothers like this one slip through fingers like grains of sand, like dust in the wind. Luckily, we found a “yes.” A doctor took this mom into care and from that point forward always treated her with kindness. But this doctor works behind the walls in a system that obfuscates best intentions and patient desires at every turn.
Back in the waiting room, after two hours of sweating in the vinyl chair, staring at that ridiculous font, waiting to go back to see this mom, I approached the nurses’ station. The desk sits behind a wall of sanded glass with a two-inch opening. The windows don’t slide which forces me to peek through, trying to get the nurse’s attention by making odd bird-like movements. I felt foolish and reduced. I wondered how she was reconciling my pecking head motions with that quote on the wall behind me, both within her limited line of sight. I felt like a grain of sand, like dust in the wind, like the fish tank. I’m right there but completely unseen. Or unacknowledged. I wondered what kind of threat they must perceive the community is to them that they need a window built like this? I wondered how a community that is always treated as though they are a danger ever has a chance of being seen for their intrinsic value as fellow humans with windows built like this.
I wondered why anyone is asking about the cause of maternal mortality anymore, it’s right there in all the obfuscated inches on either side of that opening. It was an undignified and inhumane moment. I introduced myself as the mom’s midwife and asked if I could go back and say goodnight. I explained I was not intending to stay but had arrived two hours ago to check in with the mom. Her eyebrow flew up (maybe both did but I could only see the one through those two inches). With a snort she said just to wait a bit longer, when she got the mom into a room I would be allowed to go and see her. In the event you have not waited outside an OB unit, “when we get her into a room you will be allowed back” is a thinly veiled euphemism for “we have the power, no,”
The nurses didn’t know that I’ve sat in that chair before as an out-of-hospital provider for pregnancy care in a system where midwives were not fully known or accepted. They didn’t know I’d sat there as a doula for years before that (long before doulas were a thing), taking the accusatory looks and stare-downs. They didn’t know that their whispers, and their odd procession, one by one, to the obscured glass to try to catch a glimpse of the midwife, of the “other” in their space was so familiar to me. Tonight, I am the fish tank. They didn’t know that while humiliating, that attitude is so well known to me and that I know so fully the only remedy for it. To demonstrate who I am in that space—to let them be like grains of sand, like dust in the wind, as I care for a mother without interfering in their work. They peer, their faces warped through the glass, as they hold their space on that side to show me I have no place and no purpose in their world. They ignore the family’s requests for my presence. I know this because the mother is texting me. She is afraid, and I reassure her, I am here, I am here. I reassure myself, I am here, I am here.
When I am eventually taken back, I find her rigid with fear. I sit by her and breathe with her. She surrenders. She is contracting hard and responds to the comfort measures I provide to ease her labor. The nurses see what I knew they would: how we trust and know each other, and how very little interest I have in speaking for the mother or telling them how to do their jobs. How very much my heart is linked to hers because of the work we’ve done up to that point. They don’t know it was me who said yes in a city full of no. They don’t know it was her who said yes back to me. They don’t know how seriously I take that. They don’t know she would be high risk and at risk if it wasn’t for the work we did together. They don’t know how we’ve laughed together. I find my focus and let the nurses slide into the background. They are grains in the sand, they are dust in the wind. This is the mother’s moment and I am with her there holding her hand, helping her breathe and move and use her body to birth her baby. The truth rises and the feeling in the room shifts. They maintain their position of power and can look from afar at the one willing and even happy to stay up all night, wiping sweat and vomit, listening, hearing, believing, trying to help her find her way to her baby. They touch without permission, do without explaining, yell as they see fit. The doctor comes in for the last hour of her pregnancy and she is kind and speaks gently when needed and firmly when needed. She uses her best skills. She does everything right in a system that is not built for her success as a clinician. She rises up to the font of that inspirational quote. Does it balance what transpired in the hours leading up to this moment? I really do not know the answer to that, and it all melts away for a few moments as I watch the new mom hold her baby for the first time.
I help her nurse and watch as they get to know each other and when they settle in to sleep, head out into the rising sun. I sit over coffee and reflect on the care and the collaboration which provided the access this mother wanted. I think about all women as I consider this one woman. I think about one women when I consider what all women deserve. No more grains of sand, no more dust in the wind. No more obfuscated glass walls or inspirational fonts. If we could tear it all down, and reimagine it entirely, what would it be? For mothers, for pregnant people, for families? For providers? Dignity, kindness, compassion? Relevant use of technology in conjunction with social support and interventions that prevent and not postpone? Teaching that mentors and bolsters? Patient-provider partnerships? Maybe we could take care with each other. Maybe decency prevails.
But not yet, certainly not tonight. Tonight they stared and pointed and talked, warped and myopic looking through that glass.
Tonight I am the fish tank.