Heath care is a strange place where I see silence occur in many forms as a type of violence against black & brown peoples, and especially important to me: women… this week, 2 things. In my career I’ve never been the silent type, but I hope sharing examples of what I classify as racism and sexism in healthcare can help expand our conversation. And if even one more person gets a voice… that is all that matters.
1. We received a patient from the emergency department. I was reviewing the EKGs since she had a funky rhythm on telemetry… and up in the corner, where you can type in demographic info—but you are not required to—I see that this patient is labeled as “Oriental.” I check the other EKG. It says “Asian.” I am floored. Why would you type this in? “Oriental” describes a rug not a person. I speak to a colleague who used to work in the ED and we contact a charge nurse there to follow up on this. Giving this person the benefit of the doubt and not reporting to risk management for now.
2. The second case is more complicated, but one I see in different variations much more often. Details are approximated from several cases. An older Asian woman, a mother of loving involved children and a wife, has been hospitalized in the ICU since April. She has “failed extubation” many times and had a breathing tube for the majority of her time with us. She has also had several cardiac arrests. She has end-stage renal disease and thus has been on continuous dialysis as well.
This is a critically ill patient who due to her multiple conditions and has one nurse assigned only to her— to run her dialysis and keep her safe. Every night at rounds someone offhandedly mentions that we should really address goals of care with the family.
Discussing goals of care (GOC) is one of the main things doctors are responsible for in the ICU. You need to assess how the patient would like to live should she survive to be discharged from the hospital. And this sounds brutal, but upon admission or during the course of an ICU stay, many suffer drastically life-altering medical events. Strokes that will leave you paralyzed on one side and fed through a tube in your stomach. A heart attack that will make you unable to do any activity but walk from your recliner to the bathroom. A kidney injury that will require you to go to dialysis three times a week for the rest of your life. A lung infection that damages your lungs so badly that you need a tracheostomy and rely on a machine to breathe for the rest of your life—thus making it nearly impossible to ever go “home” again.
So it is up to doctors, and sometimes nurses too, to have conversations with patients and their families about these things. Is this how your mom would want to live? What does she enjoy doing and will she be able to do that after her hospitalization??? The answers to these questions can inform then what treatments we provide—but more importantly, don’t provide.
So back to our older Asian mother and wife, receiving dialysis and unable to come off the breathing machine. At this point, she’s been in the hospital 1.5 months. It seems like some GOC discussions should have taken place, right??? Well this week, she received a tracheotomy. During the procedure she received sedation, which they continued for 24 hours post procedure to allow for more comfort during the initial period when she might bleed—so that she could rest, hopefully reducing the risk of said bleeding.
During the second night in which she didn’t wake up, despite being off sedation and on dialysis—which would clear the drugs, I started getting alarmed. What would happen if she never woke up? I went into the chart to review the GOC notes I so naively assumed must be there. You see, I wasn’t her bedside nurse—but instead one of the charge nurses on a busy ICU in a major city.
I could find no GOC notes. No palliative care consult. In a month and a half. Nothing. What the f*ck was going on???
An overly solicitous deference to the family of Asian women for decision making and tacit agreement to “do everything” without a conversation. In these instances, the female patient is most often left out of the discussion altogether. Even if the patient is clearly suffering or clearly doesn’t want the interventions. The nurses often become the patients only voice— forcing the doctors to talk to the family about the patient’s wishes.
This is a practice done out of respect for “traditional” values in Asian cultures, but is ultimately looks to me like racism and patriarchy when it flaunts modern medical ethics and the premise of “first do no harm.”
This patient had no desire for a tracheostomy. In fact, she hated the breathing tube. She hated the hospital. Will she retain her will to live when she is put into a long term care facility? My feeling is no. And so it was my duty to speak up. To ask why there had been no palliative care meeting. To question the ethics of what we’d done already. When I go back to work next week, I hope to find some answers in her chart.