Essential Visitors Only in Hospitals Causing Emergency Situations
In the past few months I have had more interactions with the healthcare system than I would like. I've had two family members almost die. I write this post to the people and the families, and anyone else potentially engaging with the healthcare system during the pandemic because there is a serious problem in B.C hospitals at the moment.
I want to state that I am not a healthcare worker, expert, academic - I'm just a person whose been interacting with the health care system because members of my family have needed to seek urgent medical attention during the pandemic. These are my experiences and I offer them to you.
I'd like to acknowledging the extraordinary measures health care workers have been doing during the pandemic. This has been a challenging and difficult reality that many people have risen to but in the same breath I believe the systems are failing many. The elderly being abruptly cut off from their families, many people unsure of engaging with the healthcare system and the barriers covid-19 has caused by family members and friends not being allowed to accompany patients on intake.
With any system being pushed to its limit, we learn, we become aware of inefficiencies and if we're attuned, humble and brave enough we see this moments as opportunities to make systems and personale intersections more effective.
On Tuesday July 28th on Twitter I wrote:
It’s an oppressive negotiation getting health practitioners to accurately provide anti-white supremacist health care. If you’re a Indigenous, Black or POC who is advocating, navigating and finding yourself to have to champion for pain management and effective pain assessment - remember this. It’s why our Mums, Dads and Aunty's and Ungcles would tell us to “exaggerate” our pain when we see the Dr. It's because of racial bias in western medicine.
I'm not going to get into this reality but here is a study from the Proceedings National Academy of Science which "reveals that a substantial number of white laypeople and medical students and residents hold false beliefs about biological differences between blacks and whites and demonstrates that these beliefs predict racial bias in pain perception and treatment recommendation accuracy. It also provides the first evidence that racial bias in pain perception is associated with racial bias in pain treatment recommendations."
Here is another study from Harvard Medical that discusses the deep engrainment of racism and discrimination in medical care. “Most physicians are not explicitly racist and are committed to treating all patients equally. However, they operate in an inherently racist system. In addition, we know that our own subconscious prejudices, also called implicit bias, can affect the way we treat patients."
In canada, because of imperial patriarchy, a lot of Indigenous peoples have been raised to "act tough" to stay alive but this societal survival tactic actually works against us when we're navigating the health care system. I've seen nurse after nurse accept Indigenous family members "6" pain scale answers and walk out of the room and I have to stop them and say your inquiry was insufficient. I go back to my family member and say - without being tough where is it at? "Oh it's 8/9" as they wince in pain.
Indigenous, Black and Poc's peoples - be honest with your pain, even if it's a white man or white woman, or person who is not looking you in the eye, whose failed to introduce themselves, who might've said something ignorant and racist at the bed next to you. Whose probably even accused you of "drug searching" - for your own safety - even though they are failing to provide a safe anti-white supremacists space - give them an accurate number - this is not the time to be tough.
This is not the grocery store where we have to tell security guards to stop following us, this is not the PAC meeting at school where Karen's are talking over you - you're in a hospital, this is your life - give them the most accurate number, and give it to them often, especially if it changes.
You grab that nurse button on your bedside table or twined onto your bed and you click it whenever that number changes so the cows don't take you home. You are never, ever, ever inconveniencing them. Even if they huff into the room, even when they roll their eyes, you press it again even if they are rude to you over and over and over - you press that button and keep on top of your pain management and when your symptoms change.
And I know this is not ideal, you're sick but the biggest problem right now in the healthcare system with the pandemic is that patients are being forgotten and neglected because families are not there accompanying them and advocating for them full stop.
Hospitals are taking precautions to stop the spreading of covid and this means sick, delirious, and vulnerable patients are being left to their own devices inside hospitals and being forced to advocate for themselves and giant mistakes are dangerously positioning ill people.
Pre-covid there was a problem with people being discharged multiple times without proper or sometimes even any diagnosis and that, from my experience has gotten way worse. With one family member we made 5 hospital visits in 7 days before they admitted him and got a proper diagnosis and on these most recent case - 4 visits and 2 hospitals before an emergency surgery took place.
The hospitals only admitted these patients when I and another family member aggressively and deliberately spoke with the Dr's and said - they are not leaving until you run more tests, and figure out what is happening. One family member was left near the emergency door shivering, in massive amounts of pain by themselves with no health plan being communicated and still no diagnosis, until a nurse felt sorry for them. He was left there for hours and thankfully now they are back at home on the mend and has stated, "I could've very well died in that hallway."
With my other family member I had to speak forcefully and explicitly (I was containing my anger to ensure he didn't walk away) to 3 Dr's and multiple nursing staffs for them to finally take us seriously and treat us with respect, dignity and urgency. If anyone has met me and if you've ever seen me speak...deliberately I've been told it can be intimidating - this is the level you need to speak to the Dr's with to ensure they get an effective health care treatment plan.
Don't assume they are "doing their jobs"ask what tests are being done, ask the intake people approximate wait time on tests, get the name of the charge nurse on your family or friends case, ask for the last vitals report (blood pressure, temp, and heart rate along with any blood work). Doing this keeps your family member in minds of the Doctors and nurses.
If you are not declared an essential visitor (see this page on what that means) use the director phone at the hospital and or call it from your cell (call 811 if you're unsure where to call and they can direct you) and ask to speak to the charge nurse for updates and ask to be put on speaker phone when the Dr' does their rounds (usually in the morning 7-11am).
I have found that medical students are incredibly keen to give attentive service and care so if your family member is engaging with one, learn their name, most recently ours was named Kristen (thank you Kristen for taking care of our loved one) and encourage their attentive engagement.
If you are Indigenous ask to meet or be given the phone number for the Indigenous patient navigator and they might be able to help you be declared an essential visitor. But do remember us coming into the hospitals are risks, so if you are sick at all - stay away and advocate remotely. But if they are not answering, if you can't get a hold of your family member and a plan hasn't been communicated - put a mask on and get your ass down there and demand to speak to their Doctor, charge nurse and be communicated their health plan to ensure your family member hasn't been lost and forgotten in the system.
Be specific when it comes to questions and details. Here are some offers that have helped me - if you're worried about heart attacks ask for enzyme counts, strokes ask about MRI's, when they say they are getting "blood work" ask what are they looking for in the different blood tests, write down the temperatures and blood pressure. If you're tracking cancer ask for blood count numbers and record those too. If they have not made a diagnosis ask if they've done chest x-rays and ultrasounds - just by asking they tend to activate and be more thorough in the diagnostic investigations.
If you're a BIPOC, and most of us know this, don't get too aggressive - they write us off, if you do go down to the hospital, I always make sure my hair is done and I put some lipstick on. If you're going and trying to get in, bring a white person with you if you can. I try to speak extra clear under the mask so they have not excuse to judge who I am. Unfortunately these are the realities that I've taken and will continue to take everytime I engage with the medical system.
Until this year I did not realize how necessary it is for patients to have an advocate with them to ensure they are getting the attention they need. 9 times my family members were released, 9. This is evidence of a system with incredibly dangerous gaps that have only worsened with the lockdown measures. To date there have been 195 deaths in BC due to covid-19 but I don't want to think of how many deaths have occured because of the systemic measures covid-19 has forced us to take that has stopped family members being able to advocate for their sick loved ones.
All in all, be assertive and do not be afraid to speak your truth and push for treatment plans. This is not the time, especially if you're Indigenous, Black and or Poc to be "nice." Again, don't assume they are doing their job and they have it under control. It's an emotional and laborious experience trying to get answers when we're locked out but I hope these offers help facilitate the equitably and effective treatment of your loved ones.
To health workers: you must do better by us. I will say it again, you must do better by us. You may be tired but our family members are alone and need your sustained alert attention.
With deep love to the people alone in hospitals and deep respect to the family members being left in the dark,
p.s. please like, share and help amplify this post, It's way more important than anything I've ever written, the health and lives of our community members are at stake.