Trauma Informed Care Principles

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).

Bearing Witness

A powerful post was recently published entitled Everything Doesn’t Happen for a Reason by Tim Lawrence.  Before you continue to read the following, please read his impactful words.

This post has resonated with many – especially the epatient community that faces incredible struggles each day.  It is something I often tell my friends who try to reassure me that everything happens to a reason, but few understand until they really experience true pain and hardship.

Lawrence quotes his friend, Megan Devine:

Some things in life cannot be fixed. They can only be carried. 

Trauma Informed Care Interview on KER Cast

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:

• Trauma Informed Care Principles
• Trauma Informed Care in Practice
• Trauma Informed Care – Disclosures and Care Transitions
• Trauma Informed Care – Non-Clinical Staff Encounters
• Trauma Informed Care During COVID-19
• Betrayal Trauma in Health Care

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

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).

An examination

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

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.

The Preface to Advocacy Project

I started something new – The Preface to Advocacy Project. On August 18, 2019, I sent out a tweet asking:

What is something you wish you knew before getting into advocacy?

What is a tip you’d give to someone who wants to start advocating?

And from there The Preface to Advocacy Project started. The insight given in the replies was compiled in one document to start a conversation on what new advocates should know when starting their own advocacy journey.

Meant to empower advocates, The Preface to Advocacy Project aims to give an inside look at everything from what to consider before you commit to advocacy, the emotional realities of advocating, to the difficulties and rewards encountered while advocating, and more.

I hope you’ll take time to look around the site and contribute to the project.

Validation

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

On My Advocacy Limitations

A post on advocacy and being sick – primarily the issue of my not being able to do as much as I want and know, if circumstances were different, I could.

It really hit me again last Monday. Comments were due on new rules for interoperability (and other issues) and I was able to submit my comments but I felt they were wholly inadequate. I could not spend as much time on them as I’d like and they were far less than I wanted to say.

Problems with Interoperability and Coordinated Care

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.

Unicorn Care

Unicorn Care: The type of whole-person, patient-centric, trauma-informed, coordinated care that all patients seek and deserve and yet remains mostly a myth. The kind of care that seems unachievable and out of reach because of corporate greed, proprietary interests, clinician burnout, and lack of imagination. The kind of care that takes all those buzzwords listed above as well as those about innovation and disruption and makes them meaningful, not just rhetoric.

I have been seeking Unicorn Care for a very long time. And In April 2019, I found it.