I recently found myself standing at the foot of a hospital bed, meeting a man with newly diagnosed cancer. His primary oncologist transferred him to my hospital for a neurosurgery evaluation, because he had a large tumor in his abdomen and it had spread to his spine. He arrived at our hospital in the late afternoon, so the biopsy wouldn’t be done until the next day, which meant we didn’t have pathology to tell us where cancer had started, therefore we couldn’t begin to talk about prognosis or treatment yet.
He was in a lot of pain, and was experiencing a lot of angst about being stuck at the excruciating halfway point between knowing there a serious problem and not yet knowing what to do about it.
The difference between the expression of his frustration and that of the other members of his family is that the latter were unfettered by physical discomfort and the use of pain meds, so at that moment I was the recipient of five additive streams of anger and exasperation. The patient’s wife, sister, nephew, and parents each took a position around his bed like a military formation, standing guard against all interlopers. They hadn’t yet decided whether I was an allied force.
I didn’t blame them. There are times when the diagnostic road is strewn with debris. There are delays in getting scans, or the pathology is unclear and the lab needs to send off additional tests, and nobody ever gets the answers to their questions as quickly as they would like, which is immediately. That I didn’t blame them didn’t help me enjoy the conversation more.
I reviewed the information we had, and what the process of getting a diagnosis would involve. I discussed the potential diagnoses and the likely treatments for each one. There were lots of questions, but the steely front warmed a little.
The patient’s father was an arthritic man in his eighties and were I to speculate about his genetic line as measured by his gentleness, he might have had honey badger ancestry. He self-described as minimally educated but what he lacked in classical knowledge he made up for with self-assertion. He wasn’t shy with his opinion.
After the rest of the oncology consult team and I stepped out of the room, he followed us into the hall and offered his professional background. He had worked at one company his entire employed life. He ascended through the ranks of a manufacturing plant and earned his promotions by merit. He eventually reached the point where he oversaw operations in the whole northeast. This meant, he told us, phone calls at dinner, emergent road trips, personal deliveries to clients to deliver late shipments or replace defective product. He sacrificed a lot to get the necessary things done.
His words: ‘And all that, for a ******* bottle cap.’ His point: sometimes it’s not just the product that matters. It’s the process.
Every time he met someone from our team (even if it was someone with whom he’d spoken already), he would dispense the same short exhortation. He’d hold his hand out away from his body and above his head and tilt it back and forth, fingers curved as if holding the operating cross of a marionette. ‘All you guys need is someone to oversee how things move around here. It could be a guy who graduated high school, just someone to keep an eye on things from the top levels, to make sure things are moving along,’ he said.
We found it honorable that the man sought to advocate so assertively for his son. I confess, though, that his suggestion didn’t make it much further than the hallway outside his door. All hospitals are complex machines, lots of moving parts. Everyone is on a different schedule and has a different workflow, we told ourselves. Things like this are complicated.
The next month, I was staffing the inpatient service and a young guy in his first year of college came into the hospital with no cells in his bone marrow. He needed a bone marrow transplant as soon as possible, and one difficult aspect of his situation was that he was from the other coast and his parents were a five-hour plane ride away. They made it to the hospital about twelve hours after they got the phone call, and wanted to start making a plan right away.
The kid’s primary care doctor, who was part of one of the largest medical networks in the country, returned our phone call almost immediately to discuss the case. Shortly after that, we heard from a regional medical coordinator on the other coast whose job was to determine the most efficient way to ensure the patient got what he needed. We were put in touch with the bone marrow transplanters at the center near his parents’ home and they started planning for his transfer.
We expressed our concern to the medical coordinator about putting a guy with no immune system on a cross-country flight because N95 masks can only do so much. A short time later, we heard from the coordinator again.
‘We’ll send a private jet for him. That’s safer,’ he said.
The stunning beauty of this gesture should be considered for a moment. Not only was this the best thing for the patient, but a person whose job was to keep an eye on things from the top levels was smart enough to recognize that a cross-country charter was more cost-effective than a prolonged ICU stay, and his system gave him the freedom to approve it.
Because it was his job to oversee how things moved around here.
The next day, a chartered ambulance backed up to the hospital’s emergency entrance and we said our goodbyes. It drove him to the airport where he got on an air ambulance and the next day we heard that he made it to the transplant center without incident. A few weeks later I heard that a full transplant match had been identified for him.
The fear, frustration, and helplessness that come with a new illness are not always solely from the disease itself, or from the prospect of intensive treatment. Sometimes the chaos of meeting a dozen new people a day, who don’t always introduce themselves or tell you why you’re meeting them, or being wheeled down to radiology for a scan that nobody told you they were ordering, or someone forgetting to ask the intern to hold your breakfast tray so now you can’t have the procedure you needed are enough to shake your confidence in the entire process.
It was a good reminder that even though things in a tertiary care hospital feel chaotic most of the time, there are some things that are pretty simple. We can take a few extra minutes to explain what things mean. We can take more time to ensure we understand a patient or a family member’s specific concern. We can acknowledge and validate frustration in a sometimes-frustrating system, rather than get defensive when concerns or resentment are expressed.
We might even have an opportunity to be creative with a solution to make something happen faster or more safely based on a patient’s specific needs. Sometimes the difference is a few people taking a few extra steps, and it ultimately means that someone gets from one coast to the other so they can get what they need in the place they need to be.