We need to talk about 'difficult women' being punished in our medical system.
Hospitals and models of maternity care are structured so many different ways. In one hospital alone that can be upwards of 10 different models all requiring women to interact and communicate differently with staff and have varying expectations from their care providers.
Some women access maternity care by going through a booking system that sorts women into different groups. Other women access maternity care by calling their care provider directly.
Once women have been allotted their model of care, there can be varying expectations about how much time they have in appointments, how regularly they should have appointments, when to call for help and a myriad of other rules or norms in that specific culture.
It has been said that culture to humans is like water to fish. Fish don't see water and similarly we are not aware of culture. That is until we step into a different one. Like a hospital. Which is culturally a very different country to the world outside.
FISH DON'T SEE WATER AND SIMILARLY WE ARE NOT AWARE OF CULTURE.
Hospitals are interesting places where the rules of the real world are suspended. There is a new language to learn, unwritten and uncommunicated expectations on women and families to behave in certain ways, and punishments when the behaviour of visitors doesn't comply with the new norms.
Women are stripped of their names, clothes and autonomy. Rebranded 'mummy' or 'honey' because who can keep up? (I was recently working with a medical student who asked me, "if I don't call her the lady in bed 6 what do I call her?).
Wearing pyjamas or a robe, she is clearly branded as a new arrival to this world. She is given her chart and told where to go next. On arrival, she tries to keep up with the conversation, even though she is missing much of the language. Like a caricature of a migrant in their new country, she smiles, and nods, and agrees.
"I'm just going to do an internal, OK?"
- This is not a question
- What is an internal?
- No explanation as to why this is important.
- Is she allowed to say no?
Is she allowed?
And heaven forfend a woman or her family break the rules. This is the cardinal sin. For that you are branded 'difficult' and this label will follow you throughout your journey here in this institution.
The change barely registers. But you can feel it. 70% of our communication is non-verbal. It's an eye roll, a sigh, a pause before responding, a glance. It is the tone or speed of speech, it is the care taken out of the careful. But she feels it. She knows she is not your favourite patient. She is aware that you have taken the power back. That you are the one who decides the next move.
For what did she receive this branding?
She didn't go the correct place to be seen, she instead went to the other ward. The busy ward. It really messed up someone else's day.
She isn't listening. She is disrespectful. She doesn't realise she is being disrespectful. She doesn't know she is supposed to revere you. She thinks you are there to help her. She hasn't said please and thank you, instead 'don't touch me it hurts'.
Her family are hovering. They are asking a lot of questions. They are unaware of the 3 other people you need to see urgently and are asking unnecessary and irrelevant questions. She didn't learn which questions were irrelevant and unnecessary.
She wants to take her time to decide what to do.
She takes her time.
She takes your time.
And because she is a traveller abroad in your culture, she needs you to help her. And she needs you to help her baby. And she is anxious. And she is uncertain. And in all the travel guides/baby books they said to ask for help. So she asked for help. Evidently not the way she was suppose to.
Louise Armstrong MD wrote "When we call patients and families “good,” or at least spare them the “difficult” label, we are noting and rewarding acquiescence. Too often, this “good” means you agree with me and you don't bother me and you let me be in charge of what happens and when."
Another Doctor, Michelle L. Mayer reflects on being a difficult patient" (it) is a tricky proposition. By advocating for myself, I risk incensing the person on whom I depend for care. I tried being the “good” patient. I suppose like many young women, I was raised to please others. My natural inclination is to be pleasant, because, in all honesty, I want people to like me..."
"Both supportive and punitive interactions between women and clinicians, depending on whether the woman’s birth intentions were perceived by individual clinicians to transgress norms of patienthood and motherhood."
Rebecca Maree Jenkinson recently published a thesis exploring whether a documentation and communication process would support pregnant women’s rights to decline recommended maternity care. She found "The feminist thematic analysis identified both supportive and punitive interactions between women and clinicians, depending on whether the woman’s birth intentions were perceived by individual clinicians to transgress norms of patienthood and motherhood"
So when we speak up, ask questions and forget to be 'polite', not to mention if we dare to decline a proposed treatment, the care provided by our 'care provider' may turn, well, uncaring.
In a culture that robs Peter to pay Paul, women's autonomy around birth is often circumvented in the name of safety,. here 'risk to baby' are the magic words that ensure women are the ones who pay the health price, emotionally and physically, and then have their experiences trivialised.
Bec Jenkinson, Sue Kruske, Sue Kildea (2017) explore the experience of women, midwives and obstetricians when women decline care. They discuss clinicians having a' line in the sand', where, during negotiations regarding a woman's care some decisions were considered too far from acceptable. They found 'When women's birth intentions were perceived by clinicians to transgress their line in the sand, a range of strategies were reportedly used to convince the woman to accept recommended care. These strategies formed a pattern of “Escalating intrusion”."
What a wonderful way to say:
There is a lot of abandonment.
She is left alone.
She doesn't trust.
So maybe next time she won't ask for help.