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.,
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).
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 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).
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.
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.
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.
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.
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.
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.,
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. 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.
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.”
The agency that oversees HIPAA (the Health Information Portability and Accountability Act) is asking for feedback on possible changes to the law through a Request for Information (RFI). The agency (OCR – Office for Civil Rights) believes that many of the provisions in the law are “regulatory burdens.” They also want to open up the ability to share your private protected health information (PHI). They say they want to do this to help coordinate care better, but it means giving up many patient rights.
To ensure that patient rights to their records and privacy of their information, it is incredibly important for patients to submit their comments to the RFI. Without patient input, other entities will likely convince the OCR to change HIPAA laws in ways that might hurt patients.
HIPAA may seem intense and hard to understand, but you don’t have to understand every aspect of the law to make a comment.
This guide will take you through the process of writing and submitting your feedback. If you have any questions, you can leave them as a comment on this post, email me at firstname.lastname@example.org or ping me on twitter @GilmerHealthLaw. And if you send me the text of your comment, I will be glad to read it over before you submit it.
The deadline for comments is only a few weeks away – February 12, 2019.