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.

Confrontations

 

This was my first attempt at fiction in narrative medicine. I submitted it to a journal for consideration but it wasn’t accepted. Disappointing, of course, but there’s so much good material out there for me to learn from, and it was a good exercise.

Based on a true story, many details have of course been changed. When the nurse enters the picture at the end, that’s where I wrote myself into the story, thinking this is the nurse I would like to have the courage to be one day, every day, or even today.

For those who know me personally and might be shocked at my use of profanity in the story, I went back and forth with this but at the end of the day, this is the real world, and this is the expression of really, really strong emotions when things go so far from what everyone had hoped. Even still, in it all, there still remains opportunity for light and for good to enter the picture.

I’m open to feedback in how to tell a story better. Thank you for reading.

*******

Everywhere he walked throughout the hospital, he swore people who weren’t even in his department were looking at him with silent accusation. I heard about what happened. You idiot. What kind of doctor are you? He was sure even the hospital cafeteria staff somehow knew what happened with him and that disastrous chest tube placement last week. He saw it in the glint of distrust in their eyes when he placed his orders. He saw it in the way they laughed with their backs to him while flipping burgers on the grill. How does everyone in this hospital know about that day!? Who the hell is talking about me down here in front of the cafeteria staff, for God’s sake? HIPAA, my ass.

Getting through residency and almost one year of his surgery fellowship was enough time to build a reputation and ego requiring some nurturing and protection. But the humility and wisdom borne from experience, those were still so nascent. This far into his practice, he was fine with the routine chest tube placements, but still found those complicated cases tricky to troubleshoot. I screwed up. No, I didn’t! I don’t know, it happened so fast and I thought I got it in ok. But the kid was screaming and her scoliosis made placement tricky and then the stupid nurse had to go push that code button when I just needed everyone to calm down and let me focus! He was convinced that if the girl had only heeded his pleas to just relax a minute! then she wouldn’t have flinched and his hands wouldn’t have been shaking and the chest tube wouldn’t have gone into the wrong place and this nightmare would not be everyone’s reality. Sterile gloves would not have touched non-sterile fields. The hemorrhage wouldn’t have happened. She developed an infection, which quickly developed into Acute Respiratory Distress Syndrome, and she was once again gasping for air, for life.

This was not how it was supposed to end.

It was supposed to be a routine chest tube placement, one final post-operative step in managing the removal of the cystic hygroma that had been compressing the young girl’s airway in increasing measure over recent years. The chest tube was to help resolve her minor pneumothorax, and overall it was looking so good. Once she got over this final hurdle, she would be on her way towards discharge, towards her new life. God, if she just hadn’t been so damn anxious!

The mother demanded to speak with him a few days after the incident. Her daughter was now on high ventilator settings and heavily sedated. Xeroform and a clean gauze dressing covered the failed chest tube insertion site. If not for the fact that the nurse had just reinforced the outer dressing before he arrived, the serosanguinous drainage persistently saturating the underlying gauze would have accused him as well. My blood is on your hands.

He knew people were calling him an asshole. Fuck them, they don’t know me. They don’t know what I’ve been through to get here. And the thing is, he had promised his wife, pregnant with their first child, that once he got through his fellowship, they could have time together again, work on paying off his medical school loans, and move out of their apartment into a condo, perhaps. He couldn’t risk it all. He had to choose his words judiciously. God it was terrifying.

The girl’s mother rose from her watch at the bedside when she saw him approaching the room. She shrugged her blanket off of her shoulders, tucked her disheveled hair behind her ears, and stepped outside the doors.

“Tell me what happened.” The mother’s tone was controlled, not overly pressing, but also not entirely safe.

“It happens sometimes with chest tube placements. When we realized it was in the wrong place, we managed the issue, got a new chest tube in, and treated her accordingly.” The fellow’s tone was controlled, not overly defensive, but also not entirely apologetic.

“I’m just not getting any sense from you that you feel sorry about any of this.” She didn’t tear up. She didn’t raise her voice. But her eyebrows furrowed, just for a second, just enough to betray her efforts at suppressing the terribly conflicted mess of forgiveness and fury rising from her gut. She swallowed hard and held the vomit at bay. She wanted him to feel so many things, but right now, she just needed him to feel as though he could talk to her.

“Of course…I’m not happy with how things have turned out. But we managed the issues appropriately.” He did not, he would not avert his gaze from hers. This was all he would offer.

She took a sharp breath as one final great protest threatened to unleash against all of her hell. He steeled himself. She could not say if it was sheer fatigue, self-restraint, or resignation that stopped her, but she found her lips frozen in an overwhelmed silence.

She had so many questions.

How can I get you to tell me what happened in any straightforward way?

 Just how sure were you of what you were doing?

 Why wasn’t it an option for you to ask for help before things got so bad? What were you trying to prove?

 Were we just an unfortunate stepping stone in your training? A necessary casualty to boost your resume? Will there be more screw-ups for you to MANAGE APPROPRIATELY?

 Why is it SO FUCKING HARD for you to say to me, “I’m sorry”?!

She found herself unable to do anything but stare at this man with the inscrutable poker face. Who could say if he secretly possessed the king of hearts or all the jokers in the deck. He had been such a welcome sight when he first entered her daughter’s room that fateful day, another key player in moving her daughter forward towards her new life. He was warm, personable, professional. By the time he had left, his role had plunged from the heights of heroism to the depths of the unredeemable. She closed her eyes, exhaled slowly through pursed lips, turned her back to him, and returned to her daughter’s side. He turned to the exit, passed the nursing station, and went to his next case in the OR. He couldn’t explain the dull hollowness eclipsing his relief.

He was back in the cafeteria the next day, holding his ground against all his silent accusers serving him food.

He took his tray to a table and had just sat down when an unfamiliar nurse approached him. Then he remembered the distinctive blond streak in her otherwise dark brunette hair that had caught his eye at the nursing station on his way out from yesterday’s dreadful confrontation.

“Hi,” she ventured gently.

She had only been a nurse for a few years. She was still learning to navigate communication with the physicians. Their place, her place, their voice, her voice.

“I don’t know you, but my name is Christina. I was Jeanette’s nurse yesterday. I know her course of events, and, well, I overheard your conversation with her mom yesterday.”

Shit, leave me alone. The last thing I need is a lecture from a self-righteous nurse who wasn’t even there the day everything happened. I bet those cafeteria guys are watching and just eating this up.

“Honestly, I don’t know what happened that day. I can’t imagine this has been easy for you. I just want to tell you –”

His face was impossible to read. For a moment, she hesitated and her face flushed as she felt her naiveté. But this wasn’t about what she had learned in a nursing school classroom. It was about what drove her into nursing, what was formed in her through all those long days and nights in the hospital with her very ill little brother, watching staff come and go, discerning roles, discerning hearts. This doctor didn’t need to know her story. She knew, and it was enough. And so, though she felt small, she found her place, found her voice, and she pressed on.

“ –I’ve gotten to know Jeanette’s mom. She’s more reasonable than you think. She’s losing her daughter and she knows it. She doesn’t want a big lawsuit. She just wants to grieve without this …question hanging over her.”

He spoke in a slow, deliberate monotone. “I already told the mom what happened that day.”

“No, not that question. She saw what happened. She can’t change it and she’s accepted that. She just wants to know if it matters to you. Right now, and for your future practice. She just wants to know if it really matters to you.”

He was quiet. Christina fidgeted with her fingers, but held his gaze.

“That’s all. I hope…you’re doing ok. Thanks for hearing me out.” She walked away.

He ate a few bites of his lunch, but for the most part, he pushed the food around on his plate, wondering what things would look like if he moved one piece one way, then another.

He stood up, straightened out his clothes, and headed up to Jeanette’s room.