Columbia University Narrative Medicine Volvox Presentation

Please join me, the editors of “The Healer’s Burden: Stories and Poems of Professional Grief,” and two other contributors to the book, Lara Ronan and Rondalyn Varney Whitney, for a virtual panel discussion in the upcoming Columbia University Narrative Medicine Volvox Presentation on Wednesday, October 28th, 2020, from 7-9 pm EST / 5-7 pm PST.

I and the other contributors will be reading our pieces, and then we will have a discussion about the incredibly important and pertinent topic of professional grief in healthcare workers.


I can think of no other year when this conversation matters more.

You can find the link for registration and other info about the book here.

https://healersburden.com/upcoming-events/

Pre-Order Available: The Healer’s Burden

I am beyond thrilled to share that this book I had the privilege to contribute an essay to, The Healer’s Burden: Stories and Poems of Professional Grief, is now available for pre-order. My essay is titled “Silent Intercession,” and I am so looking forward to slowly making my way through the rest of the pieces.

Here is a description of the book from the editors:

What is Professional Grief?

Ignore. Suppress. Hide. Work in high-loss healthcare environments commonly demands turning away from one’s interior experiences in order to rapidly turn toward the next patient. In a culture that discourages vulnerability, how can a care provider effectively deal with the challenging emotions that naturally arise when faced with death, especially now in this critical time of pandemic? Thankfully, The Healer’s Burden: Stories and Poems of Professional Grief makes a space to tend this occult grief, and not a moment too soon. In a broad array of artistic and accessible perspectives, healthcare workers from multiple disciplines bravely pull back the curtain on their experiences of loss. Despite delving into death, The Healer’s Burden eschews the twin traps of despair on the one hand and platitude on the other. Using principles of narrative medicine, the editors catalyze a much-needed conversation about professional grief by including thoughtful questions and writing prompts. This book is a must for educators and clinicians alike who wish to constructively engage with rather than avoid their experiences of patient death.

With a foreword by Rana Awdish, MD, author of LA Times best-selling memoir In Shock:
“Reckoning with grief is no small task. But ignoring it is no longer necessary. ”

I can’t encourage you enough to buy this book, and share it with the healthcare professionals around you. It’s such an important time for us to bring this conversation to light in this extraordinary year that is 2020.

Guest Blog Post for Crossroads: The Worthwhile Art of Careful Listening

In an incredibly noisy world – particularly for us introverts – the art of careful listening proves to make all the difference for my family friend hospitalized in the ICU who had only one silent but extraordinary way left to make his voice heard.

My short Crossroads blog post for The Intima: A Journal of Narrative Medicine explores this vital concept.

You can read the post here.

Essay for Spring 2020 Issue of Intima: A Journal of Narrative Medicine

My essay, Best Brother, published in the Spring 2020 issue of Intima: A Journal of Narrative Medicine, tells the story of a long-time family friend who suffered a severe spinal cord injury last summer and, like so many of our patients and families, was faced with sudden life-altering decisions in the ICU. But with a fully paralyzed body, a breathing tube down his throat, and a mind completely intact, how could he participate in any of those decisions?

The way his story unfolded was extraordinary. I never in my life would’ve seen it coming, the way he and his family found their way. It speaks a lot to the care from the medical staff as well, and what efforts they must have made to ensure his wishes were honored.

You can read the essay here.

Example of Virtual Narrative Medicine Exercise

It’s been more quiet than usual here but that’s because I’ve been busy writing for my online Narrative Medicine program with Columbia University.

I thought I’d take a moment to share the (virtual) practice of Narrative Medicine that we have been participating in for the program. It’s a beautiful approach to using creative arts to stimulate personal reflection and discovery, especially as it pertains to my work experiences as a nurse.

This week’s exercise:

We read this short poem, “The Ship Pounding,” by Donald Hall. It’s a profound description of life in a hospital.

 

The Ship Pounding

Each morning I made my way
among gangways, elevators,
and nurses’ pods to Jane’s room
to interrogate the grave helpers
who tended her through the night
while the ship’s massive engines
kept its propellers turning.
Week after week, I sat by her bed
with black coffee and the Globe.
The passengers on this voyage
wore masks or cannulae
or dangled devices that dripped
chemicals into their wrists.
I believed that the ship
traveled to a harbor
of breakfast, work, and love.
I wrote: “When the infusions
are infused entirely, bone
marrow restored and lymphoblasts
remitted, I will take my wife,
bald as Michael Jordan,
back to our dog and day.” Today,
months later at home, these
words turned up on my desk
as I listened in case Jane called
for help, or spoke in delirium,
ready to make the agitated
drive to Emergency again
for readmission to the huge
vessel that heaves water month
after month, without leaving
port, without moving a knot,
without arrival or destination,
its great engines pounding.

 

A colleague then crafted a writing prompt, to spark personal reflection in light of the poem we read.

I had 5 minutes to respond to the prompt,

“Write about black coffee.”

My written response was the following:

“I think all the time about how my patients’ parents cope with their child’s illness, with life in a hospital so rudely and indefinitely interrupted by this diagnosis, the complications. Most parents struggle deeply with an internal lack of permission to leave the hospital room. “You should go get some food, or take a walk and get some fresh air, ” I tell them. “I’m here, I’ll take care of your child. You need a break from this room.” But they won’t go for long, just enough to get coffee. It’s always the coffee they will slip out of the room for, and then hurry back, somehow slightly reassured that maybe now the day, the whole nightmare, will feel more tolerable. They’ve got that one familiar comfort in hand.

But it’s rarely an expensive $5 latte they return with. It’s black coffee. As if they can’t allow themselves to be more indulgent, to experience any greater pleasure if their child is bedbound and suffering. It’s quick, familiar, easy, cheap, not too indulgent.

I recognize that, that sense of a survivor dealing with survivor’s guilt. Sometimes as the nurse, I only allow myself black coffee too.”

My purpose in sharing this is not to put on display my writing abilities, as Narrative Medicine isn’t about being an impressive writer. It’s about shaping a space for those of us who are so busy doing tasks and putting out fires in our work as patient care providers, that we sometimes neglect our own internal embers of purpose, connection and meaning. It gives a space and a way to stoke those embers back to life.

It’s beautiful.

How a Patient’s Family Heals a Nurse in this Era of Medicine

(Author’s note: Permission has been granted by all parties involved, including the patient’s family, to share medical details that may make this patient identifiable.)

One of the things that feels most unfair about pediatric ICU nursing is that with critically ill children, you don’t get the comfort of being able to look back and say “At least they lived a long and happy life.” You ache that a baby, a toddler, a school-aged child, a teenager, was supposed to have their whole life ahead. But instead, much of their short life was marked by illness, prods and pokes, lines and tubes, sedation rather than play, a sterile environment full of strangers at all hours rather than a home full of time with friends and family. The deep desire in both the parents as well as the healthcare providers to do anything possible to give them a shot at a future – hopefully one that is meaningful and healthy – is in and of itself right and good. Yet the decision about how much to push both medicine, and the child as the obligatory recipient, in the fight for a future that is neither guaranteed in quantity nor quality, can often be wrought with profound controversy and ethical distress. Clinicians do not necessarily find peace with their work just because a life was physically saved; sometimes quite the opposite, as so potently described in this NEJM article.

K was a little girl who came to our unit for PJP pneumonia secondary to an unknown autoimmune disease; she quickly won over the staff with her charm and spirit. Ben became her primary nurse, and she would count down the days when Ben would be back to work. K once told her frightened neighbor in their shared room, “Don’t be scared. You’re okay, and you’re not gonna die because Ben’s your nurse.” The insight, generosity, and pure trust of this statement give only a small glimpse into the extraordinary person that K was at her young age. But we weren’t naïve; the reality of her condition made her statement so very ironic and bittersweet. We knew she had a battle ahead, so we weren’t necessarily surprised when she was transferred out of the ICU to the regular ward, only to emergently return to us a few days later in worsening respiratory distress. We held our breaths and made faltering efforts to hold up our spirits as she finally succumbed to the need for a breathing tube, which took away the ability for her parents or any of us to hear her sweet voice or see her feisty spirit, now sedated by necessary medications.

K wasn’t getting better, and everyone knew it, including her parents. She had asked for everything to be done, and so her parents promised they would give her every effort. But they knew the final effort at a very invasive therapy known as hemodialysis was going to be a Hail Mary. And as expected, once the hemodialysis started, K’s blood pressure did not improve; it became, in fact, incredibly labile. The miracle was not to be, and so the family decided within the hour of starting the therapy that it was time to remove the breathing tube and say good-bye to this beautiful, vibrant soul. Their heart.

They mourned deeply and immediately, with the heaving sobs of parents who loved their child enough to give her every chance, but also respected her personhood enough to not relegate her to a limbo, sedated existence on machines when there was no real light of life left in her. They had been so kind, so brave, so generous in spirit with the hospital staff through all of our time with them. No one would have once blamed them for being angry or withdrawn; yet they held a posture of such open partnership with the doctors and nurses throughout the entire process. Perhaps they saw us as advocates, caregivers, medical authorities; they might have even seen us as heroes. But in the way they treated us? They simply treated us as people who saw, knew, loved, and wanted the best for their daughter the same way they did. We had conversations in this spirit, and it felt like a safe place for everyone. We talk a lot about wanting to rightfully create a safe place for the patient and family. But we talk very little about how families can create a safe place for the healthcare workers, too. This family gave us a safe place.

You see, this family gave us the gift of meeting and caring for their child. But they also gave to us the profound hope that it is still possible, in this era of pushing the envelope with medical technology, to do everything medically possible for their child and still be completely reasonable and respectful of the personhood of everyone involved – the patient, the family, and the healthcare providers. I find this to be deeply healing, because so much of what I do as a pediatric ICU nurse hurts me in ways that I never anticipated. I anticipated hurting with great apology over having to participate in administering painful procedures, but I accept this gladly if it gives the child a decent chance at survival and meaningful recovery. I anticipated hurting with grief over bearing witness to death, but I accept this if it means I can be a meaningful presence in a terribly isolating time of loss. I did not anticipate hurting with such cynicism over a profession that I once thought to be only driven by good, for good. I did not anticipate hurting with such doubt and self-loathing on the days when I felt myself to be the one who would not let a weary soul rest in peace, but rather continued to agitate, turn, feed, clean, and medicate someone in perpetual distress over their over-medicalized nightmare when there was no real chance of meaningful recovery.

This family’s brave, selfless and clear-minded approach to their daughter’s last days showed me that it is still possible for me and my colleagues to heal in the ways we want to heal, hurt in the ways we accept we will hurt, and not harm in ways we never, ever intended to harm.

Ben may have been present when this precious soul died, but he and K’s parents – and the entire healthcare team in close partnership – allowed K to truly live, up until her last breath.

I find this to be so deeply healing in this era of medicine.