I was lying on a stretcher feeling like I’d been raped by a butcher knife. I’d had three children, one was induced, one came with a massive hemorrhage, and one was a c-section…but nothing…i mean NOTHING could come close to matching this pain. I had just come out of hysterectomy surgery. The back of my right leg felt like it was on fire, yet it was numb at the same time and hurt to apply even the slightest pressure.. like that of a finger… or just underwear. I screamed so loud they must have heard me three floors away.
“Calm down, Ms. Gifford, you’re scaring the other patients,” I heard the nurse say.
“It hurts so bad. What did you give me?” I replied.
“It’s not enough,” I wailed.
And so it would go for the next two days. I cried out all night long, too medicated to push the button in my hand and in so much pain that I prayed for death. I would need a walker to get around – they had done something to the nerve on the back of my leg that rendered me unable to walk – or even sit on a toilet seat without excruciating pain. I would cry myself to sleep and wake up screaming. Sure, I got the medicine my doctor had prescribed, but clearly it wasn’t enough. I don’t remember much about those days – fortunately I’ve been able to block out most of it to preserve my sanity – but I do remember two very distinct moments:
My husband, a health care provider himself, had tried tirelessly to advocate for better pain management. The pain management plan in place was inadequate, and even then, I often waited an hour or more after requesting relief to actually get it. My husband laid down in my hospital bed and curled up behind me. He sobbed as I sobbed. We lay there completely spent, traumatized, and hopeless. No one would take ownership, step up, and help us.
The second thing I remember is a lovely woman from food services who brought in a tray of food that I would never eat (I’d been vomiting throughout my stay). She saw me in the bed, wailing in pain, and she began to pray for me out loud. She cried out to God to bring me relief. It was the single greatest act of empathy I experienced the entire time I was there.
When I finally went home, it wasn’t because I was ready, it was because I knew I’d be better off at home, where I knew at least I would get my medication on time. Over the next few weeks, I often thought about the gun in the safe. I knew how to use it. I should use it, I thought. This pain will never go away. The trauma of what I endured in that hospital bed would stay with me for months, to the point where the first time I had to visit someone else in that same hospital, I almost vomited from the smell of the sterile hallway. I’ve never been tortured, but it sure felt like that’s what happened to me at this world-class hospital, which consistently ranks in the top 10 in the nation in many areas.
Fast forward a year, and my best friend had a baby at this same hospital. By coincidence, they also did nerve damage to the back of her leg during the labor due to poor positioning, and she required a very invasive episiotomy that tore deep into the tissue. The pain was excruciating, and again, poorly managed. To add insult to injury, she was placed on a non-maternity floor because her baby was in the NICU. At 5’11”, she was given a bathroom the size of a small closet, where she couldn’t sit on the toilet and spread her legs open enough to use the perineal wash her doctor had ordered without her legs hitting the wall. So each time we needed to do the perineal wash, we had to put her in the stand up shower, which caused great pain to her leg and nearly made her pass out. There wasn’t enough room in the bathroom for anyone to get in with her or even stand to the side and help her get out. It was an accident waiting to happen. She was discharged in great pain, before she could walk unassisted, and without a wheelchair or other assistive device for mobility.
And then there’s my own daughter. She also had a nightmarish experience at this same, top ranked hospital, which I won’t get into here because then you might think these problems are isolated to this one hospital. But last week, she had surgery at a different hospital (also highly regarded), even though it was more than 90 minutes from home. She liked the doctors there and thought they would take care of her. She was wrong.
Her surgery went well enough…they cleaned out her sinuses and drilled through the bone to allow them to drain more freely in the future. However, in an effort to get her home that evening (the surgery ended close to 6pm), they neglected to give her IV pain medicine in recovery. Instead, they came to get me from the waiting room.
“You’ll hear her,” the nurse said. “Someone is not happy.”
As I walked down the hall, I could hear my daughter, my baby, screaming in pain. It was a cry no mother should have to hear. A thousand Stephen King movies couldn’t do it justice.
“We were hoping you could calm her down,” they said, as if the sight of my face was worth a thousand narcotics.
I could see she was in big trouble. My first instinct was to start screaming myself and start mopping the floor with the incompetent people before me, but I knew that would get me thrown out.
“What did you give her?” I asked.
“.4mg of Dilaudid,” they said.
“It’s obviously not enough, I replied.” I then launched into a diatribe about how my daughter has had this surgery three times, how it’s never been this bad, and how her pain response is typically disproportionate to what providers think it should be because her cystic fibrosis causes her to metabolize everything differently than a “normal person.”
So the nurse and anesthesiologist started arguing about what to do.
“If we give her IV meds, she can’t go home,” said the nurse.
“Do you really think she’s going home after pulling this?” asked the anesthesiologist. I wanted to punch him like I’ve never wanted to punch anyone in my entire life. “Pulling this?” Like she was acting? Seriously?
“I’m not taking her home like this, so you need to give her everything you can give her to make this pain stop,” I said.
They talked some more and agreed to give her a shot. At this point, I turned on the video camera of my phone to see just how long that would take. It was over 15 minutes, and she had been out of surgery for an hour. At one point I was there alone with her, still screaming and crying out for someone to help her. I looked around to see what was taking so long and nobody was there. No one.
Finally, the anesthesiologist returned and hit her with a cocktail of drugs that knocked her out for about two hours. In the meantime, the nurse paged a resident who wasn’t on call to figure out what to do next. They didn’t reply, of course. The anesthesiologist had a fun time degrading her about that. He then explained how he would text the correct doctor and get a good pain management plan in place for that evening.
The resident did what he/she wanted. The pain management was oral narcotics and very low doses of dilaudid, which didn’t work in recovery, so surprise….they didn’t work on the floor either. The night nurse talked about keeping the meds to a minimum to meet the “goal” of having her go home the next morning.
“My goal is to have her not be in pain,” I said. “So it looks like we have conflicting goals. Page the doctor.”
Nearly three hours later, my daughter got a dose of fentanyl that eased her pain. However, the nurse later told her it wasn’t in the orders (even though it was) and wouldn’t give it to her again.
That afternoon, I called the patient advocate and detailed everything that had happened. I let her know that I had the whole recovery debacle on tape, and that I was sure the Joint Commission would love to see a copy. I asked for the names of every provider involved in her care, and insisted that pain management be made a priority. Within an hour, she had called me back three times to let me know everything she was doing.
By that afternoon, I had a phone call from the attending surgeon who claimed he had no knowledge of any of this. The residents had told him everything was fine. He swiftly remedied the situation (which got blown again when the “pain management” team took over and tried attributing all of her pain to anxiety). Again, I demanded that the nurse page the attending surgeon (who was tucking his kids into bed at home), and once again, he made sure she got what she needed.
So what the heck is going on here? How is it that in world-class healthcare institutions, patients are essentially being tortured? Why do we suck at pain management? Here are just a few of the reasons I’ve come up with:
1. Residents and Nurses are Afraid of the Attending Physicians – and rightly so in some cases. I’ve been around enough doctors to know that some are first class narcissistic douchebags. But not all of them. Had it not been for my daughter’s attending physician, she may NEVER have gotten any pain relief until she left the hospital. Residents want to impress their supervisors by handling everything, and nurses don’t want to annoy the doctors who can be downright snippy, condescending, and rude.
2. Addiction and Drug Seeking Behavior are Problems – Look, I get this. People die from narcotic overdoses all the time. I don’t understand how people get addicted, because one dose of a narcotic guarantees me a date with an enema…so I choose my poison very, very carefully. My daughter won’t even take Advil on a normal day for fear of rebound headaches. The moral of the story? We’ve become so cautious about addiction and abuse that we’ve missed the point of pain medicines…they are to be used for pain!!! People can’t OD in the hospital, and in the hospital, there’s no excuse for significant pain…ever. We have the resources!
3. Health Care Providers Assume that Pain is Anxiety – Obviously, any kind of procedure comes with anxiety, and we know that anxiety can cause actual pain, but guess what, being in pain causes anxiety! Before you assume that someone is a head case, try managing the pain. If what you’re doing isn’t working, then do something else! Don’t stop until it’s under control. And for the love of God, stop treating people like they don’t know what pain is. We do!
4. Lag Time – This is probably the single biggest contributing factor to poor pain management. At a teaching hospital, you might press the nurse button, then this happens:
- The secretary asks what you need.
- They send in the student nurse to ask you again.
- The student nurse goes and asks the supervising nurse what to do. Depending on what the supervising nurse is doing, they may or may not get to it right away.
- If there’s an order in for pain medicine, the nurses wait for pharmacy or go to the locked down narcotic dispenser where they have to bring another nurse to check it, scan a bunch of stuff, and generally jump through hoops.
- If there’s not an order for (effective) pain medicine, then the nurse can page the doctor, who may or may not reply within a reasonable time frame (side note: when someone YOU love is in great pain, what’s a reasonable time frame?).
- If the doctor doesn’t reply quickly, the nurse has to decide whether to page him/her again and risk annoying them.
By the time this is all said and done, usually at least 15 minutes have passed. Sometimes (as in my case) an hour or more. So I ask you again…if someone you love is screaming, crying, writhing in pain, how long is too long?
We should be ashamed of ourselves for accepting this type of treatment. Maybe you’ve never experienced it, but when it’s your parent or your child….you’re going to wonder why nobody is fixing it.
And I scratch my head. I think I may need some anxiety medicine now.