A Little Empathy Goes a Long Way
When I took that picture up there, I had no idea the perspective it would bring me nearly a decade later. But we'll get to that in a moment.
As a career zealot for healthcare performance improvement, I've come to deeply understand the barriers and drivers experienced by those designing and delivering care to patients. Simultaneously, my family has experienced our share of exposure to the healthcare delivery system as patients, with three of the four of us in my household suffering from various chronic conditions requiring regular visits to primary care, specialty care, and urgent/emergent care. As such, I've developed an intimate and unique relationship with hospitals, physicians, nurses, administrators, and all aspects of our healthcare system. Beginning with this post, I'm going to take some time every week or two to share a personal story which bridges that gap between patient and provider, human and hospital, and illustrates why it is so imperative that healthcare entities operate with empathy, authenticity, and critical thinking.
The first topic I'd like to touch upon is one that hits close to home for many of us: the opioid epidemic. According to the CDC, opioid overdoses contributed to more than 47,000 deaths in 2017 alone, and many of us have seen our communities and families wracked by this crisis. Around 2010, the nation saw a spike in prescribing which many blame for the current levels of addiction and misuse today. Many providers were reckless; I had a tooth pulled in 2007 and received a 30 day supply of hydrocodone! That level of prescribing wouldn't (and shouldn't) pass muster in most places today. Issues with prescribing practices certainly still exist, however, what we're now seeing in some places is that the pendulum has swung too far. Many states, localities, hospitals, and providers thought that they could solve the problem by reducing prescriptions alone, and not only has that not been the case, but in some cases patients are consequentially being prevented from accessing the therapies they require.
Now back to that photo up top. That's me, in all my dad-bod glory, relocating a bush in my family's garden in the spring of 2013. As you can see, I have it tied around my waist with a strap. I must've spent 45 minutes trying to yank that thing out of the ground by all means possible, to no avail. Eventually, I tied it to the bumper of my truck, and finally freed it from the hard clay. This photo captures the aftermath of me moving the bush to its final resting place, where it took root and still stands today (according to the pictures on Google street view, at least). What I didn't know at the time was that those 45 minutes of pulling a strap tight around my lower back had caused two discs to herniate: L4-L5 and L5-S1. I went out to dinner that evening with my wife and in intense pain; I woke up the next morning and collapsed to the ground, completely unable to stand under my own weight.
Upon arriving at my local emergency department, I was brushed off as a prescription seeker, and begrudgingly prescribed three days of oxycodone for a "pulled muscle". Only after three months (during which I took a two week trip to Japan and China - I can't recommend 12 hour flights on a bad back!) of only limited recovery did I return to my PCP, who ordered the MRI which confirmed the herniations. An enthusiastic surgeon eagerly suggested a microdiscectomy, a procedure which he said would leave me pain free and ready to dive back into life. As you can probably guess, this wasn't the case.
In my current role, I work with hospitals and healthcare providers to discover and implement resources which may help reduce adverse drug events related opioids as well as address the ongoing opioid crisis. I've heard countless patient stories which demonstrate that this epidemic is not limited to any class of people; it is an equal opportunity killer. My home state of New Hampshire ranks 5th in the nation in the overdose death rate per 100,000 people, and Maine, where I was born and raised, ranks 8th. The people becoming addicted to and dying from opioids are people I know; my family, friends, and neighbors. Thus when I engage with healthcare providers on this topic, it is something which hits particularly close to home for me, and which I have a particularly vested interest in.
My interest in opioid stewardship and responsibly addressing the opioid crisis does not only come from watching how it has impacted my home communities, however. As I alluded to above, the microdiscectomy was not the end of back issues for me. Since my initial procedure, I have re-herniated my L5-S1 four more times, albeit to lesser degrees. I've suffered progressive degeneration of the discs and surrounding bone structure, and before age 30 I was already cursed to a lifetime of lower back pain.
One focus area of improving opioid prescribing practices has been chronic pain. All kinds of evidence now exists which points to opioids as being a poor long term choice, both in efficacy and safety (specifically as it relates to the potential for addiction), for chronic pain. There is no shortage of journal articles outlining studies to this effect. However, as I've discovered, the reaction of the medical community to this information, as well as to the growing body count, as been at times too rigid, and the antithesis of patient focused.
Let me walk you through a typical re-herniation for me. It all begins with something seemingly innocuous; I do laundry, work in the garden, or reorganize a room at home. Later on, I notice I'm sore, with pain radiating to my hips and thighs. I take a Tylenol, lay on a heating pad, and go to bed. The next day, I wake up, stand up, take three or so steps, and instantly collapse in a heap. It feels as though the bottom half of my body is completely disconnected from the top half, like in a cartoon when a character is cut in half and then stacked back together. The pain of standing, sitting, or lying down suddenly becomes so unbearable that it is the only thing I can think about. Each breath sends shockwaves through my upper legs. I crawl, on my hands and knees, to the nearest bed or couch, where my wife lifts me onto it like a ragdoll, and that is where I lie for the better part of 3-5 days.
Now, at this point, there are two paths I have been down, and this is where I see the bridge between personal experience and practice improvement. Twice I have experienced what I consider reasonable, patient-focused treatment, and twice I have experienced what I consider irresponsible, reactionary treatment. Strong words, I know, but when you can't sit, stand, lie down, or sleep, you don't tend to mince words.
The first and last times I re-herniated, my doctor (my PCP the first time, an ED doc the last time) prescribed me a three day course of oxycodone, a course of prednisone, bed rest with activity as tolerated, and physical therapy once I was able to move adequately. These episodes typically resolved within a couple weeks, and the physical therapy (which I admittedly have never stuck with as I should) helped strengthen me against near-term re-herniation. As a matter of fact, I'm currently experiencing my longest running "healthy" streak as I write this (knock on wood)! I never became addicted to the oxycodone, and didn't even use all three days' worth either time. It was critical the first two nights in helping me rest and sleep comfortably, as I was completely unable to lay still without it due to the pain and restlessness.
The middle two times are real examples of how not to treat patients. The first time (second episode overall), I visited the ED at a major academic medical center and waited in a wheelchair, in agony, for an hour which felt like an eternity. Upon telling the ED staff I had a herniated disc and was both unstable and in intense pain, I was told to tough it out and continue sitting in the wheelchair. Once I was brought back to a room, I was immediately given a dose of dilaudid, a potent painkiller which I did not want and which was overkill given my situation. It immediately made me feel sick, and I remember the rest of that ED visit as feeling miserably nauseous. I followed up the next day with a spine specialist, who decided on the spot to give me an epidural steroid injection which I did not particularly desire nor was I prepared for, and who treated me with a sterile lack of humanity and empathy which has been seared into my memory. The way he treated my case like a checklist, refused to listen to me, and showed no sympathy as my anxiety surged under the needle should have all been videotaped and shown to medical students as an example of everything not to do. The injection didn't help in any significant manner, and I was stuck with thousands of dollars of bills for the ED, injection, spine specialist, as well as the trauma of multiple hour-long car rides and unnecessary, excruciating transitions from place to place. I was prescribed no pain medication, and told to go to physical therapy and work through the pain.
The third episode also saw me visit the ED, this time at a critical access hospital near my home. It was nighttime, and the staff was clearly burned out. Against my better judgment, I had taken a maximum dose of Aleve despite knowing that NSAID use almost certainly meant ulcers for me. For years I had suffered from GERD, while taking daily NSAIDs for my now-chronic low-back pain. Upon consulting a gastroenterologist, we decided to try discontinuing all NSAIDs and voila, no more GERD, no more ulcers, life is good (at least digestively!). Anyhow, upon arriving at the ED I notified the nurse of this, and was placed in a room, where I waited for an extended period of time. A doctor came in, took down my history, and immediately knew what was wrong. I knew something was up when he sat down across from me, put his hand on my shoulder, and looked me in the eye (although doctors: do this more often! it is a good thing!). He proceeded to tell me that what I needed was a short course of narcotics and a course of prednisone (sound familiar?) to get me through the acute issue, and then followup with physical therapy once I was able. However, due to his hospital's policies, and the fact that technically I had a chronic low back condition, he was unable to prescribe me any narcotics, at the risk of losing his right to prescribe at this hospital. He apologized to me, an apology that felt genuine and deep, and left the room. The nurse came back in and gave me some medication. Well, it turns out that he had ordered toradol, an NSAID, despite my having already taken a maximum dose of another NSAID, and sure enough, I ended up with an ulcer shortly thereafter. Come into the ED with back pain, leave with back pain and an adverse drug event. Neat!
The moral of this story is that no two patients are alike, and treatment modalities need to take this into consideration.
For a patient like me, having a prescription for three days of narcotics on hand (as I do now, thanks to a spine specialist who took the time to talk to me and understand my case), along with a course of prednisone, prevents me from having to even go to the ED should I experience another re-herniation. My addiction risk, given my history, is quite low, and I've demonstrated compliance with the plan time and time again. I no longer have to worry about painfully dragging myself to the ED, being given drugs I don't want and which may do more harm than good, or writhing in bed for a week in agony. If I do a load of laundry tomorrow and re-herniate, I can have my wife lift Raggedy-Ryan into bed, reach for the necessary prescriptions in my nightstand, and recover at home with less pain, better efficiency, and at far less cost.
For other patients, there may be serious risks associated with this course of action. Some patients may even require inpatient treatment, or placement at a rehabilitation center. However, treating all patients the same ensures you're going to treat many patients wrong. This is why it is so important that healthcare providers understand the need to move from the era of cookbook/big-data medicine into "Health 3.0" as Zubin Damania/ZDogg MD puts it. Having experienced both positive and negative outcomes, as well as being so deeply engrossed in the opioid epidemic in my day-to-day work, I have come to really understand both sides. It is imperative that we reduce unnecessary opioid prescribing and move towards using evidence-based practice as a means to determine when to prescribe. However, it is also imperative that we begin listening to our patients, assessing their unique situations, and making decisions for their wellbeing using critical thinking. For a long time, the doctor-patient relationship was a sacred thing, and doctors understood that patients knew themselves best. Over time we've moved to a system where a patient is ones and zeroes in the electronic health record and every action is derived from an algorithm. It's time to leverage the data and measurement capabilities we have today while returning to a time when doctors were empowered to get to know their patients and make decisions with them, not for them. For me, based on my own experiences, all it takes to get started on the right path is a little empathy.
A little empathy goes a long way.