My Care Concerns Document

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.

Background:

I must start by saying that when I first went to use it, unfortunately, the surgeon and hospital I gave it to decided that this along with other documents I shared to help them know how to provide trauma informed care meant they discriminated against me and cancelled the surgery. Cruelly reminding me that not all clinicians and institutions are open to patient input or engagement. In other words, it is up never a certain thing that providers will take information and use it to help you. However, when they do, the results can be amazing, which is why I’m glad I kept the document and shared it with my next primary care provider.

Turns out, that primary care provider felt the information was so important, she scanned it in to my chart. I found this out when I went to my pre-op appointment at the hospital 2 weeks ago and was stunned to find out that they’d uncovered the document. My PCP and the hospital are owned by the same corporation that uses Epic and (without my consent) that document was shared. I was terrified that it would mean another cancelled surgery, terrified that they would be overwhelmed by my trauma, terrified that I would be hurt because of the words I wrote and trying to advocate for myself. I had no control in the interoperability of systems transmitting my information (an issue I talk about here and one more patients should be aware of in terms of how their information is being shared), I wasn’t ready to share with the hospital – I felt like my privacy and trust was violated.

But…

This hospital had the completely opposite reaction. The nurse practitioner (NP) going over my case told me he’d found the document and my heart raced, fearing the worst. Fearing another cancellation. Instead, he said – “This is amazing!” He went on to say he wished other patients could have something like this and how helpful it would be for the care team. He was glad to have it.

Surgery went as planned. Because of my honesty of my care concerns, the hospital gave me what I can only describe as unicorn care – the type of care we all wish for, the type that policy makers talk about when they talk about coordinated care, the type of care that is far too elusive. Nurses (from pre-op to post-op to the hospital room), the anesthesiologist, physical therapy and occupational therapy, CNAs, and others were all handpicked to ensure I received trauma informed care. Again – unicorn care.

I asked as many of them as I could – if the documents I provided helped them. Every single one said it helped. Every single person said it made a difference. Their acknowledgment of what I wrote and knowing the hard work I put into this document was validating and thus healing in it’s own right. I’d also added a short document on non-verbal cues that they found equally helpful (a last minute creation to help my care team because I have often experienced emergence delirium when awaking from anesthesia and cannot speak. It worked equally well when trauma overwhelmed me throughout the hospital stay).

Today when the home health occupational therapist came to evaluate me, the first thing she told me was that the document had landed in their charts too and how deeply grateful she was that I’d made it. It nearly brought me to tears knowing I was seen and heard and respected because of this document.

And with that, I knew it was time to share My Care Concern Document so that other people can perhaps make their own version. Below you will find a summary of the document parts, a .jpg of the document, and a link to a word document you can download to make your own.

What you want to share about your background will be different. Your care concerns may also be different. Or they may be similar but you explain them differently. You may not need the information on trauma informed care that I’ve included in my document and you may want to take it out or put in something else meaningful to your care (maybe even a picture of a pet you have that keeps you going – anything you think is important for clinicians to know about you). The point is I want to share this in an attempt to empower other patients in their care.

Below you will also find a .jpg and a downloadable word document for you to make your own (again, partly because the .jpg may be hard to read) of the Non-Verbal Cue Document I started working on. I primarily used sign language gestures to be able to alert clinicians if I was experiencing pain or trauma, if I needed them to stop what they were doing (usually trauma related), and for things that might comfort like water or a blanket in the event I was not able to verbalize what I was experiencing. I would ask if anyone in the deaf/Deaf or non-verbal communities finds this offensive, please let me know. Or if anyone in the deaf/Deaf or non-verbal communities have better ideas for how to signal to clinicians when they are in distress, I would love to hear them.

For those who might think of other items that could be important to convey to a clinician (or other caregivers), I would love to add those (keeping in mind most of these are focused on trauma and not just health care actions). There are healthcare communication boards out there but none of them seem to be trauma-specific, which was what I need(ed) most. Again, the Non-Verbal Cue Document is a work in progress but something that really helped all who were caring for me in the hospital – especially the sign language “T” for trauma.

I truly hope adapting versions of these documents for yourself or even just thinking about how you might convey your care concerns and specific needs will improve the care you receive in the same profound way they’ve helped me.

Overview of the document:

Essentially there are three parts to the My Care Concerns Document which can be summarized as:

Background – What providers should know about you and your past medical history in general.
Care concerns – Aspects of care that are important to you and may need extra focus including issues like communication, worries (like not feeling heard or being judged), or specific instructions (for example, around touching and triggers).
Trauma-informed care principles – Principles of trauma informed care as outlined in current research and highlighting certain aspects that are important to your care.
- You can find more about Trauma Informed Care starting with my post on TIC principles here. And for practical ideas on what might help you while getting care, you can see my post on TIC in practice here.