Trauma Informed Care Principles

June 25, 2018

Current events are bringing awareness to trauma and its lasting effects on the mind and body.  But few are talking about the implications this has for trauma survivors in seeking care and the lack of trauma informed care in medicine.

Trauma Informed Care: when every part of a service is assessed and potentially modified to include an understanding of the emotional issues, expectations, and special needs that a trauma survivor may have in a healthcare setting.[1],[2]

Trauma informed care needs to be a central aspect of these discussions as trauma lasts a lifetime but few health care providers are well trained in the trauma-informed care approaches. This means that many with a history of trauma – which can include medical trauma, domestic violence, childhood abuse, sexual assault, and more – can face retraumitization when seeking care. Unfortunately, this population often needs more care as trauma brings chronic physical and psychological illnesses or to address injuries caused by trauma (even long after the traumatic incident).

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Trauma Informed Care Interview on KER Cast

December 17, 2020

I had the pleasure of joining Victor Montori to talk about trauma informed care (TIC) for the Mayo Clinic’s Knowledge and Evaluation Research (KER) Unit’s KERCast series. You can find the discussion below as well as on the KER Unit youtube channel and on any podcast platform by searching for the KER Unit. You can learn more about KER and find links to other a wealth of other interviews on everything from shared decision making to reducing the burden of research to particpatns to artificial intelligence here.

In this interview we cover everything from how I came to writing and teaching about TIC to why love is an important part of providing trauma informed care. We discuss concepts of gentle curiosity and universal precautions that can help transform health care into a healing space. 

Of course this was only a jumping off point and will hopefully will bring others to want to learn more about TIC. For further reading, the following series gives a comprehensive overview of TIC:

I also quote Dr. Montori’s book Why We Revolt during the interview and highly recommend you give it a read as many of the concepts overlap with trauma informed care. 

A transcript for the video can be found here.


Betrayal Trauma

December 7, 2020

I think a lot about betrayal trauma lately. Specifically betrayal trauma in health care. When most people come upon this term, their reaction is usually an astonished, “There’s a name for that?” because many patients understand this type of trauma but never had the words with which to convey the painful occurance. In fact, it seems all too common in health care, a place where we’re supposed to find help and healing. But because patients have not had a common language to talk about betrayal trauma, we haven’t had all the tools we need to address it. Only through exploring this concept can we start to process the harm caused by betrayal trauma and begin to change health care to address its harmful effects.

What is Betrayal Trauma?

“Betrayal trauma occurs when the people or institutions on which a person depends for survival significantly violate that person’ s trust or well-being” (Freyd. 2008).

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An examination

May 21, 2020

Turn this way. Turn that way. Take this off. Let me see. I’m just checking. Breathe now. Relax.

That’s what he did.

The others. Hold me down. Strip me bare.

Dignity taken. Control stolen.

Don’t cry. Be strong. If you’re good…

When you cry, there are consequences.

Cry about a cast on your arm when you’re ten – “You want me to go get the saw right now? I’ll cut if off right now if you don’t stop crying.”

Say your elbow hurts when you’re 15 – “Let me see” slams his fist down. Laughs. “See, it’s fine.” It was broken.

Anxiety shows itself in tears at 18 after your final consult with the surgeon who will break your jaw in 5 places and rearrange it so you can eat again. You’re grounded. You’re a bitch.

What is the point of fixing what’s broken when fixing it hurts more and you’ll always be broken?

What is the point of fixing what’s broken when there’s nowhere to go after?

The places that were supposed to be safe are the very ones that always hurt me.

Home. Doctors. Hospitals. This little spot where I thought I could breathe.

I fix one thing and break the next. None of it connected so no one sees it all.

They think it’s the pain.

It’s not.

They think it’s anxiety.

It’s not.

It’s okay to put it off, they say. I know the consequences for putting it off.

I hand them the DNR and advance directives. You’re too young.

I’m too old. I shouldn’t have made it this far. But I tell them it’s because of law school.

No one will follow the DNR. No one is that compassionate.

There was that one time. It was dark. And peaceful. And nothing hurt. Nothing at all. And I was okay. Just darkness and peace.

They brought me back.

They didn’t save me, though that’s what they call it.

Strapped down. Laughed at. Lectured. Yelled at. Looks of pity. Looks of disgust. Looks of frustration. Looks of incredulity.

Everyone thinks they know, but no one does.

They’ve met people with trauma.

They’ve met people with trauma from men.

They’ve met people with trauma from fathers.

They’ve met people with trauma from doctors.

They don’t know what to do when it’s all three in the same person.

They say it’ll get better. It doesn’t. But they never stick around to see.

One did. He understood in time. It took years. Seeing these glimmers of hope destroyed again and again.

He helped me know what shouldn’t have been.

How many times did I ask her if he’d drugged me? Because things didn’t add up.

And then that day I knew for sure.

How many times had she lied?

She chose men over me.

She told me once she left me there on purpose. She knew what he did, what he was like. But she didn’t want to be around him.

I tried to be an adult. I didn’t understand the things that were wrong that I should have understood.

A brother who told me time and again “you should kill yourself or I’ll do it for you.”

A brother who threw a knife at me and chased me into rooms where I was afraid beyond measure.

They too were hurt by him. But I was the target.

Does this hurt? How about this? Let me just do this. Let me see. Let me feel. Let me…

No one ever believed me when I said I hurt.

I liked xrays and MRIs because they didn’t lie. Somebody could finally see.

There was that doctor, my father, who said my wrist wasn’t broken – it was.

There was that doctor, my father, who said my elbow was fine – it wasn’t.

There was that doctor, unrelated, who said they didn’t realize how bad my shoulder was until they did surgery.

The same doctor who said they didn’t realize how bad my elbow was until surgery.

There was another doctor that said my knee hurt because I was fat – it was torn.

There was a doctor that said my headaches were because of my blood sugars – I had herniated discs and occipital neuralgia.

There was the doctor that said my hip was because of my endometriosis – it’s not.

I tell them I’m good with pain. I’ve been through a lot of it. They hear that a lot.

There was the broken foot with no pain meds because I couldn’t afford any.

There was the jaw surgery where I only had 4 days of pain meds because I got sick.

There were abscesses and herniated discs and broken bones and endometriosis and coming back from suicide and so much more. I learned just to stay very still and pray, even when I believe in nothing, that pain would stop.

It doesn’t.

Lift this up. Take this down. Walk like this. Stand like that. Don’t move. Push back. Squeeze here. What does it feel like?

When everything hurts, nothing hurts at all anymore.

You come prepared. You try to explain. You try to say what needs to be said and write what can’t be said at all.

At some point it’s forced out of you, some of the words you can’t say because it’s the only way they can hear it.

Eyes down. Don’t look at them. It’s more uncomfortable for them. You shouldn’t make them uncomfortable. They don’t want to know. They won’t understand. They need to understand.

It’s not exactly what they think – it’s both worse and not as bad.

Compelling and tragic, one said. Words that can’t be processed.

There are no words. For what happened then. For all you survived since.

Submit. Again and again and again and again.

You tried to escape. In high school. You left.

But you are cruelly tied to a profession that will never let you go.

It owns your body and most of your mind.

What little is left doesn’t make up a life.

They own every piece. Each of them, one part. None of them sharing.

You’ll never be whole because they can’t see the whole. They see the parts.

It’s just one more test they need.

It’s just another appointment to go through.

It’s just a delay.

It’s not a big deal.

That’s what they all say.

But it is not just one more test or one more appointment or a simple delay. It is all a big deal.

You have no control. It’s in their hands.

You’re one patient in an ocean of patients.

Don’t make them mad. You know what happens when doctors get mad. You know the consequences.

Submit. Be good. Don’t cry. Be strong. Let them…

When does my body get to be mine?

Never.


Trauma Informed Care During COVID-19

April 16, 2020

Trauma Informed Care (TIC) is the idea that care should be sensitive to patients’ trauma (disclosed or undisclosed) and should ensure treatment is careful, kind, and compassionate. Given the high prevalence of trauma and the potential for retraumatization in health care, implementing TIC should be a competency of every health care system, including its extensions into the community. As COVID-19 spreads across the world, health care is mobilizing personnel, equipment, information, and policies to care for the victims of this pandemic. This article puts forward that these preparations must also include and achieve TIC.

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Validation

September 14, 2019

I’ve shared information on validation in other posts but decided to make an infographic to make the information more accessible. Along with holding space, reaching in, and allowing folks to express themselves, validation can be a powerful way to help others and show you care.

I’ve but this in a pdf form in case you’d like to print it out to share: Validation Infographic


Problems with Interoperability and Coordinated Care

May 25, 2019

Interoperability: connecting technology across health care. The idea is that if your information is in one system, clinicians can access your information wherever you go – like med lists, diagnoses, allergies, and more.

Do you know how it can backfire? Has it backfired on you? Probably not.

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My Care Concerns Document

April 24, 2019

A few years back, I started working on my appointment primers – documents to bring to each appointment that give my history, symptoms, and a little bit about me. I posted a template of these primers here for others who might be interested in making their own.

As part of the primer, I took time to outline My Care Concerns – using bullet points to hit the highlights of what is most important to me, in fact, the issues I most often face when seeking care. I put these care concerns on every primer that I give to every new provider. Then a year ago, when I was facing surgery for my c-spine, I wanted to transmit this information in a more universal way and with a view toward Trauma Informed Care. And so I developed the document below.

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On Self-Expression, Holding Space, and Reaching In

February 20, 2019

I wrote a thread the other day on Twitter addressing the issue of people not being able to hold back with their “helpful” comments and how holding space is often what folks who are going through difficult times need. It seemed to strike a chord with many, so I’m reposting it below (with additions).

Before I repost, I will say that offering unsolicited advice is a common problem people in patient and disability communities face. People who think that they are being helpful by telling you what worked for them. Or people who want to interject with problem solving. Or people who want to turn the discussion to fit their needs – their need to be seen as knowledgeable/right, their need to be seen as helpful, their need to have their experiences and emotions validated first. This is not okay.

I think many disabled people are becoming more assertive in saying unsolicited advice is not helpful and it crosses boundaries. But when we do, we are met with backlash of those who are “helping” as not being grateful enough or as complaining too much.  Essentially, “well why are you saying anything if you don’t want to fix it?” or the versions of those “helpful” people  saying that hearing someone relay their experiences is “too much” for them. This dynamic needs to change. People need to respect boundaries of those expressing themselves, validate those experiences, hold space, and reach in with humility.

Thread:

Dear Twitter users, It is perfectly ok for you to read someone’s expressions of frustration, obstacles faced, upset, or other emotions without jumping in with “solutions.” It is healing and healthy for people to express themselves as they process their realities.

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Post-Hospital Syndrome is Real

February 17, 2019

Post-Hospital Syndrome (PHS) is a period of time after discharge from the hospital where patients enhanced vulnerability to disease as well as an elevated risk for adverse events, including hospital readmission, generalized dysfunction with new cognitive impairment, mobility disability, or functional decline, and even death.[1],[2]

In 2013, I came across a perspective article by Dr. Harlan Krumholz in the New England Journal of Medicine entitled: Post-Hospital Syndrome – An Acquired, Transient Condition of Generalized Risk.[3] It was the first time over years of hospitalizations that I felt that someone had finally hit on part of the hospital experience no one talked about – going home. It finally put a name to something I’ve experienced but could never put a name to – something I wanted to explain to my doctors (both inpatient and out) to help improve my care.

I wanted them to understand that while hospital stays are coded as “events” – as singular points in time with a beginning and end, distinguished “episodes” unique from ongoing care, they aren’t singular events for any patient. Our story starts long before and continues long after. And that part in between, the hospital stay itself, has long lasting effects. Post-Hospital Syndrome is one of those effects.

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Trauma and Psych Wards

January 29, 2019

[CN: Suicide, Psych Wards, Self Harm]

Tomorrow will be the 16th anniversary of my first stay in a psych ward. I was placed on a 72-hour hold after a suicide attempt. The second semester of my second year in college and while I’d attempted and had suicidal ideation before, this was my first time actually admitted. I’ve been in 6 psych wards total and I’ve written a bit about my experiences in the past.

Today, though, I want to write about how psych wards create trauma and what truly terrible places they are when you are really struggling.

Marsha Linehan, who created Dialectic Behavioral Therapy (DBT), said it best when she said:

“You know there isn’t a single shred of evidence that any hospitalizations ever kept anybody alive five extra minutes.”[1]

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