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.

I’ve been in health care my entire life. And, in many ways, my entire life, I have sought Unicorn Care. As a child, I wanted as a patient to be heard through my lisp. As a teenager, I wanted to have a voice. As a young adult, I started to see I wanted systemic change and to understand the decisions we make. In law school, I realized I needed to fight for health as a human right. As a lawyer, I worked in all these areas – to help people be heard, to give people a voice, to create systemic change, to fight for human rights. And as each year has passed, I have wanted my experiences and the bigger picture to finally come together, while frustratingly finding the opposite in my health care experiences. Each year, I felt I was fighting harder for what was increasingly harder to find.

There are times I thought I might have seen Unicorn Care but it was just a flash out of the corner of my eye. Not the real thing. Not until April 2019 when I was scheduled for a right hip labral reconstruction – a surgery I had tried everything to avoid. Essentially, in October 2017, I tore the labrum in my right hip. The labrum is essentially cartilage around the socket of your hip that cushions and acts like a seal to hold your hip joint together. When I first found out about the diagnosis, I couldn’t imagine surviving it. The trauma involved was too much – there was no way out and no way through.

By March 2019 though, my symptoms had become too debilitating. Walking around a grocery store and bringing those groceries to my apartment up 40 stairs was becoming near impossible. At that point, my hip surgeon said, “it’s time.”

When I arrived at the hospital for my out-patient pre-op appointment, I was anxious. Not because of the surgery but because the last 2 surgeries that had been scheduled for my c-spine were cancelled in devastating ways. I wasn’t sure how this was going to go. I planned to withhold information so they wouldn’t be overcome by my complexities and cancel this surgery too. I wasn’t going to tell them about my trauma. I wasn’t going to ask for anything special and certainly not trauma-informed care. I wasn’t going to unnerve them with my diabulimia or give them any reason to deny me care. Not this time.

But then the Unicorn Care started to emerge. The nurse practitioner (NP) came in and he told me he’d found this document of my care concerns, uploaded to my chart in Epic’s electronic health record (EHR) (the problematic nature that I didn’t consent to the upload to be discussed another time). I held my breath, prepared for him to tell me they wouldn’t treat me. Instead, he told me he loved this document (which I have since uploaded as an example for others to use here) and how grateful he was that it existed. He went on to tell me that he, the hospitalist, the NP for the surgical floor had already been talking about me and how to help me – what challenges there were to face and that they’d all agreed they’d put in the effort to help heal me.

I spent a few hours with the NP for pre-op and the NP of the surgical floor. All those things I was going to hide, I was able to share. I was able to tell them my fears – that I wasn’t scared about the surgery, I was scared about the trauma. I told them I’d been hurt by other health systems for sharing this information and they promised they wouldn’t hurt me. They were receptive to my information and open to my thoughts as I wondered if this was real. No surgery I’d had before was so thorough and open and caring – dare I say, patient-centric. They heard me.

About the time I injured my hip, I was starting to learn about trauma-informed care (TIC). The journey of discovering TIC started after a procedure under general anesthesia resulted in my emergence delirium upon waking up. I didn’t know at the time what emergence delirium (for me, essentially waking up in panic with severe flashbacks) was until I was connected through twitter to an anesthesiologist who gave me direction and helped me learn what to ask for – that I could indeed ask for completely different cocktail of medications to help me through surgery. And I connected with Dr. Carole Warshaw of the National Center on Domestic Violence, Trauma, and Mental Health – a leader in TIC.  She sent me an article on Patient-Centered Perioperative Care for a Victim of Military Sexual Trauma (open access, and while a case study of a women who experienced trauma, it is relevant to many trauma cases). I gave this study with my notes to this team along with information on trauma informed care and we set up a call for a few days later so I could talk to the anesthesiologist.

In the end, I think that call was 2 hours. No one in medicine has time for a 2 hour conversation with a patient and yet they made the time. We talked about everything – every medicine we could try, that they’d handpicked every clinician who would work with me from the nurses to the techs to the PT and OT, that I could make up hand signals to help in case I was having a hard time communicating, that everyone would know how to help, they’d listen and do their utmost to understand from a trauma perspective all the difficulties that might come. They even switched the day so they could bring in a specialist to perform a special nerve block. They changed everything for me and they gave me a voice in this process that I’d never been afforded before. The anesthesiologist gave me her cell phone number, the NP for the surgical floor gave me her email. They were listening and they saw me as a whole person – flawed and vulnerable and seeking help – and they were going to set up a system to coordinate every aspect of my care.

That phone call was hard because I had to disclose things through tears I didn’t want to disclose about my past. There was no way around it to explain certain issues without disclosing. And at some point in that conversation, the anesthesiologist told me “I’ll be your guardian while you’re sleeping.” I cried then because I knew she would.

I was certain then this was Unicorn Care. Even if something went drastically wrong in the 4 days until surgery, I knew that this was whole-person, patient-centric, trauma-informed, coordinated care. The type of care all patients deserve and rarely exists.

The unicorn that stayed with me throughout.

April 15, 2019 was the date of surgery. I was there by 4:45am for a 5am check in. Heart beating fast that something would go wrong, that this unicorn wasn’t real, I met my pre-op nurse as we started to get me ready. I was determined not to break, not to show my trauma. I was going to be strong and do my best to dissociate as I knew they’d be touching me, my privacy ceded to their hands, my body given over to health care – no longer mine.

But just before I had to submit, I started to break. No way out. No way through. My body wasn’t mine. My mind was separating but unable to dissociate to survive. That’s when the Unicorn Care all started to fall into place. The pre-op nurse let me cry and told me she admired my strength. The anesthesiologist held my hand tight, whispering in my ear that I was strong as the specialist performed his procedure. They knew it wasn’t the pain that was making me cry, it wasn’t the fear of surgery, it was the fear of trauma – the intense, overwhelming, unmooring, uncontrollable, unknowable trauma that seeps through my veins and no one can take away. They heard me through tears and sign language and compassion. They were unicorns. And I was glad that I’d brought some unicorn erasers and unicorn sticks to hand to them and say – thank you for being part of my unicorn team.

The baubles I gave to my Unicorn Team.

 

A detour: Grey’s Anatomy, Season 16, Episode 19, “Silent All These Years” aired March 28, 2019. If you haven’t seen it yet and you work in health care or you’re a patient, even if you think the show is campy and dumb, I encourage you to watch the episode. It may be triggering for some as the plot centers around a sexual assault victim but it is also healing. I watch the show every week despite how unreal it is and many of the silly plot lines. But this episode wasn’t silly. I remember watching it and saying – this is what trauma informed care looks like and crying because I didn’t think I’d ever know that kind of care – that kind of Unicorn Care.

But as we – the anesthesiologist, the pre-op nurse, and one of the surgical nurses – proceeded to the operating room, I felt this wave come over me. It felt like the last scene in that Grey’s Anatomy episode, I felt protected and cared for in a way I couldn’t express and didn’t expect. I felt like that scene I’d watched weeks before.

(spoilers: this is the scene)

They waited to put me to sleep until everyone was there, as I’d asked. They’d made sure people were holding my hands, which at 36 and having 9 surgeries under my belt and countless procedures, you wouldn’t think I’d need. They made sure everyone introduced themselves. Unlike the rushed, hurried, traumatic experience of the surgery I’d had just 2.5 months before, this was all about making me feel safe.

I don’t remember coming out of surgery – there was no emergence delirium. Later they told me the pre-op nurse sat with me in the recovery room, that she say with me for a very long time. For those who don’t know, each person in surgery has their own role. There’s very little cross over. Pre-op stays in pre-op, post-op is completely different. For the pre-op nurse to come with me into the operating room and hold my hand until I was asleep and then come back after to wait for me to wake up is an extraordinary thing. To have people who cared so much to be there that they go beyond their roles in health care does not happen. At first when they told me that I’d woken up long before I could remember waking up scared me – the thought of not remembering is a deep amount of my trauma. But when they told me she was there, that trauma melted away. I’d been protected the whole time.

Unlike most, my care meant 5 days in a hospital instead of 1. My complex health needs and lack of at-home support meant I had to be in the hospital longer – traumatic in itself both from past difficult hospital stays (medical PTSD) and other trauma (triggered easily by lack of privacy and dignity). But the nurses and techs chosen to work with me were unicorns too – kind, patient, understanding. When I cried so much I couldn’t speak, I gave our agreed sign for trauma (the letter “T” in American Sign Language), they reminded me I was safe and okay. When I was concerned something wasn’t working, they listened and didn’t challenge me. We worked together – through my difficulties taking pain meds and frustration with my slower recovery, through the trauma of addressing the catheter and changing the dressings on the incisions. Every step along the way, they listened and coordinated, they were kind about my trauma and saw me not as the difficult patient but as someone they could help heal. It was the kind of system that policy makers have been pursuing for years – efficient, kind, complete, patient-centric.

Every day, the pre-op nurse came up to visit me. The anesthesiologist came by on an extra day. The clinical coordinator brought me a balloon bouquet with a charm to keep by my side. The tech came to hold my hand when I saw the incisions for the first time (a trigger too hard to explain) and came to talk again even when she was at the end of a long shift, not assigned to me that day. The nurses never seemed bothered if I asked for something extra, and the PT and OT team helped me laugh through the unbearable first steps. Every person entering my room, a unicorn in their own right, one even bringing me my own Unicorn Putty. All were added to the unicorn team with their own little bauble to acknowledge their kindness and compassion. The entire stay something I’ve fought hard for in health care for my entire life and incredibly came into existence.

I don’t say that this is Unicorn Care so lightly. I really have worked on this for as long as I can remember. I’ve been a researcher, studying how people think and make decisions. I’ve helped survivors as a victim advocate. I’ve been a consultant to private and public entities trying to establish the meaning of patient-centered and how to coordinate care effectively. I’ve studied and helped implement policies to improve health care from health care technology to health care systems. I’ve helped determine grants that create the research that underscore those policies. I’ve written and given speeches and shared my ideas on how to improve health care. And I have never in my life – personally or professionally – seen care delivered like this. I have never seen Unicorn Care.

Every single person – from the surgeon to his clinical coordinator to his PA to the imaging technicians to the surgery scheduler to the NPs to the hospitalist to each nurse and tech and clinician and staff throughout the hospital to my PCP and psychiatrist and so many others involved in this surgery both before and since – cared in a way I have never seen before. They were kind and careful as we hope health care will be when we seek are hurt but often is not. And though this surgery still created it’s own trauma in certain respects, everyone healed me in ways I cannot explain. These unicorns were amazing for they understood there is no salve to ease the tenderness of vulnerability but compassion. They took every tool we have in health care and went above and beyond to make magic.

A butterfly given to encourage me along my journey.

So I write this post for them. To thank them all for giving me Unicorn Care. And as a call to clinicians and executives, patients and researchers, venture capitalists and inventors, caregivers and policy makers to fight for Unicorn Care – to fight for care that listens to patients, that gives patients a voice, that creates truly coordinated systems of whole person care, and understands that this kind of health care is not only a necessity and a kindness, but a right that all patients deserve. I may never experience it again, but I sincerely hope I will because I know it can exist and it should exist for everyone, every day, in every aspect of care.

I still have a long way to go in my recovery. This last month has been full of ups and downs, stops and starts, gains and setbacks, and struggles I wasn’t quite ready for. My friends remind me it’s okay to be a sloth when I’m frustrated I’m not healing as quickly as I’d like. Healing isn’t linear. But even then, I’ve got a unicorn to help me along.

Dazzle, the unicorn sloth

 

4 Responses to Unicorn Care

  1. giftbearer says:

    That’s great that you got that kind of cpmpassionate care! What facility was this and in which state?

    I live in Georgia and have been going through a hell of a time trying to find this. It’s been an absolute nightmare ever since I was targetted by the biggest most powerful healthcare system here. I literally cannot get good care anywhere in the state and I’ve had to change providers over and over. If I didn’t own my home I swear I’d move in a heartbeat to someplace more progressive.

    Georgia is way behind the national average in its social service safety net and all that goes with it, as those who hold the purse strings, the people who run the state and have all their needs taken care of don’t get why these things are needed by the poor on Medicaid and Medicare.

    I’ll tweet this entry for you in hopes the right people will read it and tak action. Who knows, maybe some venture captalist will start a rival system as a national franchise to challenge the status quo.

    This should really start being taught in medical and nursing schools now so that those who were to staff such a place if one were created would come in with the right kind of mind-set to maintain that sort of atmosphere.

    • I’m so sorry for all you’ve been hurt by health care especially when you’ve tried again and again to get the care you need. I’ve been in this place before too in different states and with different corporations.

      I tried not to name anyone on purpose because I do want this to apply to any system but it was Porter Hospital in Denver, Colorado (owned by Centura Health). They deserve kudos for their care and can use this instance to educate others as to providing better care.

      I agree this should be taught in medical education – not just in schools but in continuing education. Teaching trauma informed care and coordinated care should be a standard part of care that can allow patients to be seen as whole people, reframing judgment of those of us often seen as “difficult.” I find that once providers are introduced to these concepts and able to change their perspectives, care is radically different. But they have to be open to it, not threatened by it. And too often health care corporations operate out of fear and defensiveness. How lucky I was to find this instance of folks who were open and weren’t defensive. They saw the bigger picture.

  2. jennjilks says:

    Erin, this is amazing. I just don’t know what to say, but that I am moved. YOU are amazing. You are loved.

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