The paradox of treating pain in a system too full to manage it

My 13-year-old daughter was writhing on the floor from pain in her back and belly, a fever, and intermittent chest pains. She was two days out from a spine surgery intended to fix an 8-month-old gymnastics injury. She couldn’t take any steps on her own, and it was a three-person project just to get her from the couch to the chair.

“Go to the ER,” the hospital answering service said.

I tried to explain there was no way I could get her into the car, let alone the hospital or the multi-hour ordeal that awaited us there. “We’ll call you back,” the service said. They needed to speak to someone clinical.

In the hours between the next call, as the pain worsened, I tried emailing her actual surgeon and her primary doctor directly but to no avail. When the call was finally returned from someone unfamiliar with my daughter’s details, we were told the doctor couldn’t spend time figuring out what the problem was with our daughter and we should … “go to the ER.”

It became personal. It felt as though the very people who were supposed to help us thought we were exaggerating, faking, or somehow disingenuously wiggling our way in to take up their time. I was incredulous — but why? This is what I do for a living. I’m an interventional radiologist who specializes in treating patients with pain. How many times have I echoed those same words and left desperate families alone like that? How many frantic long emails from patients have gone unread and pleas for understanding have I passed over? I’m not a bad doctor; I’m not a bad person; and the attending doctor on that Saturday didn’t dismiss us because he didn’t care. Still, how could he possibly be thinking about anything other than my daughter and this situation which had taken over our lives?

Because my daughter was one patient out of hundreds for whom he was responsible. He was operating. Covering five hospitals and three different doctor groups. And trauma. And his own patients. He was tired from being up all night and working 15 days in a row and didn’t know my daughter. He didn’t have the life force energy to provide personal care for her. And even if he did, what about the next 20 calls?

As it turned out, my daughter had an uncommon infection involving her intestines which was progressing throughout her body including the metal placed during her surgery. She has since had many more surgeries because of that and suffered several complications and setbacks.

At our follow-up appointments though, we are told: 1) additional surgery won’t help this situation, and 2) That’s it. Nothing else for the surgeon to do.

It struck me again: I see this all of the time. The patient is cut loose to figure out what to do next on their own. And what does that feel like when they finally do track one of us down on their own, only to have us superficially attend to their layered and complicated and personal situation because we are too overwhelmed to do anything more? It feels like they are hurting, and no one is listening – and honestly – they are right.

Increasing numbers of patients suffering from pain are feeling abandoned, dehumanized, and disconnected from their caregivers1 – and with good reason. Doctors are strung out. Burned out. Overworked. Asked to care for hundreds of patients every day, and COVID made it worse. I’m on the inside, and it is still wildly difficult to navigate the health care system and get my daughter the attention she needs. What about all the patients without my kind of access? How much more lost and alone are they?

So how do patients like my daughter find advocates for their long-term care? I can’t help but think of Jerry Maguire and his manifesto, “less clients!” Doctors need fewer patients. Manageable days so that they can take time to understand every patient’s needs. More self-care. One-on-one, human-to-human level of operation. Quality over quantity. And don’t forget the patients who got addicted to the medications we prescribed along the way, and now we’ve pulled the plug. We are obligated to provide alternatives for these patients, develop solutions, and care for them in the interim.

Most of the stories from patients with pain are complicated and require time and detailed problem-solving. At present, we are just trying to get through the list before midnight so we can see our families.

Solving this problem is complicated for sure and limited by the very problem itself (we don’t have time to think about it). But the health care industry is imploding with more doctors retiring or leaving the profession every day – leaving those of us who remain with an even greater burden, and progressive disconnect in the name of efficiency. Pretty soon, there won’t be anyone at all on the other end of that Saturday call. Then what?