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This story is from the Anamnesis episode called Taboo and starts at 13:50 on the podcast. It's from , a neurosurgery resident at Indiana University School of Medicine.
Following is a transcript of her remarks:
"Non-survivable? I don't understand. What do you mean?" Those were the words that were echoing through the hallway of our emergency room in between the screams of a mother who just got the most devastating news she will probably ever hear, that her 20-something-year-old child has a non-survivable brain injury.
Now, before we go further with the story, let me take you back a bit just so you can understand the circumstances under which that happened. I am a first-year neurosurgery resident in a level one trauma center, which means I'm the in-house neurosurgery resident on call when the phone goes off in the middle of the night.
When it happens, it usually only means one thing, that there's a new patient waiting for me in the emergency room with some kind of neurologic injury. Whether it's someone who fell and bumped their head or it's someone with devastating neurologic injuries, I'm often the first person from our service to lay eyes on these patients and it's up to my often very quick neurologic exam to determine how serious these patients' conditions are.
It often means my split-second decision about whether someone's pupils are equal or whether they're flexing versus extending an arm can mean the difference between simply watching them and taking them for an emergency bedside procedure or an emergency surgery.
There's Nothing We Can Do
Sometimes, though, that means evaluating a patient that is so severely injured that there is nothing we as neurosurgeons can offer that patient to help improve their outcome or even ensure their survival. Such was the case with the 20-something-year-old I mentioned at the outset.
It was a patient that was in a very bad motor vehicle accident. They got CPR at the scene of the accident and were taken to a smaller community hospital before they ever made it to my level one trauma center to get the most advanced care possible.
Unfortunately for this patient, their injuries were too severe and so much time had elapsed between the accident and when they actually got to my hospital that by the time they arrived there wasn't anything we could do to give them any kind of meaningful recovery.
From a medical standpoint, we, as physicians, have the data to support our decision-making. We have decades of experience behind us guiding how we practice medicine.
We can say with some degree of certainty how our patients will do and what their outcomes will be. As neurosurgeons, however, we still tend to be on the more cautious side of things because everyone with a brain or spine injury is going to respond a little bit differently.
Predicting How a Family Reacts to a Death?
What we don't have the data to predict, however, is how patients and their family members will react to the news we tell them. That's where the difficult part of our job comes in.
I can sit in a room with my colleagues looking at all these patients' brain scans. And based on that, in combination with their neurologic exam, make a decision regarding their outcome.
In the case of this 20-something-year-old -- that their injury is non-survivable. We do this not infrequently as neurosurgeons in the trauma center.
The part that is never easy about the process, though, is having to figure out how we tell the family members -- in this case a mom, a dad, and siblings -- that their child and sibling will not survive their injuries. After this shift, I tweeted about this experience and someone asked me what kind of language I use to deliver bad news and it made me think back to my training as a medical student.
When I thought back to the education I got in medical school, I could recall several lectures with titles like "How to deliver bad news" or "When the news isn't good" where we had to walk through delivering bad news to actor patients. All this made me realize is how the only thing that can teach you what it's like to have these discussions is to have them with actual families, real patients.
Death, Screams, Banging
There is no substitute because trying to prepare yourself for that conversation is futile. Nothing can prepare you for the screams, the banging on the wall, and the feeling of being so utterly lost that these family members often just sit there staring off into space, frozen in time.
The language we use in the situations is incredibly important because what you say and, more importantly, how you say it, can mean the difference between your audience understanding what's going on and not. It's simple, though. Be direct and don't beat around the bush.
There are a number of guide frameworks that people have developed over the years to help with this task, one of the more well-known being the SPIKES framework. The problem with these guides, though, is that they're really only good for a controlled environment, like an in-office consultation where the patient and their families are prepared to have a potentially difficult conversation, for example, patient seeing an oncologist to talk about a new cancer diagnosis.
While in-hospital care of trauma patients can be described as controlled chaos, those framework mechanisms pretty much get thrown out the window when you're talking about a trauma patient in the middle of the night.
For neurosurgery patients especially, I try to use language that portrays the severity of the patient's injuries without imparting any kind of finality to them, for example, using words like "catastrophic" or "non-survivable injury" instead of words like "dead" or "death." This way, the family members still have the opportunity to see and experience their loved ones while they're still alive.
A Mother in Shock
Now, going back to my patient, it didn't matter what I said. Nothing we could say or explain to the mother made a difference. She was in shock and could not process the information we were giving her.
Her screams were guttural, and the deafening silence that followed them was one of the most haunting things I've ever experienced. There is no comfort in anything we say or do for the families and there is no comfort in anything we say or do for us as the providers.
I still don't know that I've fully processed this experience.
In the medical community, we often joke amongst ourselves about becoming too cynical after we've been doing the job for long enough. While I think it's partly true, I think it's also largely a coping mechanism to help us grieve ourselves when we're presented with these types of situations, and over and over again for our entire career.
Medicine is a wholly selfless job. We have chosen to work in a field surrounded by people who are sick and oftentimes at their worst, and yes, while we get excited and overjoyed when our patients do well, there are just as many who don't.
It's those patients, the ones that we can't save, that I think take the biggest toll on us as doctors. Unfortunately, as long as we're working we'll continue to see these devastated patients during our careers.
While I specifically talked about this one 20-something-year-old who is only a few years younger than I am, that same night I had another patient with similarly devastating brain injuries, but instead of being in their 20s was in their late 80s with many other comorbidities. The patient's family members took the news of their loved one's condition with nowhere near as much pain and nowhere near as much anger as the mother of that 20-something-year-old.
This patient had lived a long, full, happy life, and the family was much more at peace with the illness knowing that. The mother of my young patient though, screaming out in pain and anguish, knew that her child had so much more left to give to the world, a feeling that no-one could help fix for that mother.
Since being asked to participate in this episode of "Anamnesis," I've had a number of patients in the same situation as the 20-something-year-old I started the story with. Young, healthy patients tragically stolen from the world too soon.
There is no explanation for it, and there's nothing I can do to prevent it from happening. I will, however, be there always to help care for these patients when they come through the doors of my hospital.
I'll leave you with this, the summation of what my takeaway is from these patients and their stories. We, as doctors, carry these patients and their memory with us throughout our career.
They're the patients we never forget, the patients that keep us humble, and the patients that remind us to always cherish what we have in life. So, please don't take that for granted.
Other stories from the Taboo episode include "I Was Pregnant and Swallowed a Handfuls of Pills" and "So Pro-Life They Almost Killed a Pregnant Woman."
Want to share your story? Read the Anamnesis Storyteller Tip Sheet and when you're ready, apply here!