Unicorn Care

May 17, 2019

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.

Read the rest of this entry »


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.

Read the rest of this entry »


Three Words

February 21, 2019

Three words

“I have trauma”

Three words that need to carry the gravity of more than three words can carry. They need to express the inexpressible. They need to be the words that tell the story that can’t be told.

Trauma in healthcare means different things but not usually what these three words must stand for. There are trauma patients that come through the Emergency Room door on stretchers, trauma surgeons standing by. Nurses and doctors who treat these traumas with efficiency and dedication.

“I have trauma.”

But they can’t see it.

Three words.

They need to know and I can’t say.

How deep it runs.

Where it came from.

What treatment it needs.

They keep asking what’s wrong with me when I need them to know what happened to me.

The types of trauma – too many, too varied.

The understand the trauma of a gunshot wound or violence or natural disaster.

I know they won’t understand my trauma.

There’s no time to explain, but it will affect everything.

There’s no time to read what I try to write when the words don’t exist to tell them out loud.

There’s time for three words.

“I have trauma.”

But they aren’t enough.

Read the rest of this entry »


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.

Read the rest of this entry »


Possible Changes to HIPAA – What’s this RFI All About (A Summary)

January 14, 2019

Over the past month, I’ve been tweeting and blogging about possible HIPAA changes that may be in store after the OCR (Office for Civil Rights – HIPAA enforcers) published a Request for Information (RFI). With the deadline for comments about a month away (February 12, 2019), I thought I’d distill the information into a bit of a summary – a sort of tl;dr version of my last 5 posts.

I’d encourage anyone interested in your healthcare privacy rights to read over the information here. I’ve suggested questions at the end of each section for you to consider and will follow up in my next post with how you can submit comments on the RFI.

What is this RFI?

This is NOT a chance to comment on everything we don’t like about HIPAA. While we all know there are many places where HIPAA can be improved, this RFI is about 5 specific areas of HIPAA. The OCR has proposed very specific questions in each area for people to answer and those are what they want feedback on (those questions can be found here).

The 5 areas include:

  • Sharing information between doctors
  • Sharing substance use and mental health information with friends and family
  • Accounting of Disclosures
  • Notice of Privacy Practices
  • HIPAA “burdens” that prevent policy goals around Value-Based Care

There’s a lot here and you certainly don’t have to address every part of the RFI. You can pick and choose what is most important to you.

The rules they are interested in are primarily part of the HIPAA Privacy Rule found at 45 CFR 164, Subpart E (for the nerds who would like to catch up on the current language). In each of my previous posts I’ve taken these areas one by one and answered the questions in detail. I’ve given background on why they matter, examples of how they work now, and concerns as to why and how potential changes will harm patients.

To be clear: Changes suggested in each part will hurt patients.

Read the rest of this entry »


The Doctor and Nurse Who “Got It”

October 11, 2018

Content Warning: Self Harm, Suicide

Note: The story that follows is very personal and quite difficult. Please proceed with caution and compassion.

_______________________________________________________________________________________

This is the story about a doctor and nurse I once had and how they “got it.”

Read the rest of this entry »


Trauma Informed Care – Non-Clinical Staff Encounters

September 12, 2018

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]

Below is a discussion about trauma informed care practices for non-clinical staff, an important and often overlooked area of trauma informed care.  This is the 4th in a series of posts I’ve written on Trauma Informed Care. Before reading, you may want to go back and look at the others in the series:

Read the rest of this entry »


%d bloggers like this: