The emergency room (ER) feels different from the other side of the desk. As a physician, the ER is a place of action, a place where mental processes cannot be allowed to idle below a certain rate, a place of fast, focused thinking and frenzied action, which, in all but the busiest inner city ERs is interrupted by varying stretches of time when the pace is languorous and those slow moments are put to good use to share clinical experiences, gossip and bond with the team one will rely on during the inevitable frenzied moments. As a family member of a patient with a serious medical emergency, the ER starts out as a place of frenzy as the nurses, doctors, assistants and technicians of various stripes descend upon one’s loved one to draw blood out, stick intravenous (IV) lines in, attach various monitors, examine her and wheel her to and from CT scan/X-ray/MRI machines. Unless, the first few moments make the diagnosis clear – which usually leads the patient quickly to the operating room – those moments of frenzy are punctuated by long stretches of dreadful waiting, waiting for reports of tests, waiting for the loved one to be in less pain, watching monitors beep, watching saline fall drop by drop in the IV, catching snippets of conversation between the staff, and sometimes letting the mind wander to lessen the worry and the tension. My mind wanders to the utterly trivial matter of a nurse’s name as my wife lay asleep on the ER gurney.
Hers is an old woman name, I thought. It hasn’t been popular in decades. I have only known nursing home patients with that name. She must be in her twenties. Why did her parents name her so? Was it to honor a beloved ancestor? Was it random? Did they worry about how a name would affect her personality? Did it? It couldn’t have been easy being a high schooler in the 2000’s with a name whose popularity peaked in 1920s.
The nurse flits about my wife who is in a drug-induced sleep on the gurney. The lights are off and the only light in the room is from large, clear glass sliding doors. Those doors are the width of the entire room not for some aesthetic reason, but so as to allow easy access to large portable instruments if they have to be brought in or if large number of people suddenly need access to a patient in case she codes. The nurse checks the line to see that saline drops continue to drip at the rate they should. She glances at the heart rate, blood pressure and oxygen levels on the monitor and leaves. My wife has stage 4 breast cancer. Until her scans about 4 months ago, it seemed that her treatment regimen was working. She was taking medicines by mouth. They had few side-effects compared to infused chemotherapy. Now all that is about to change.
We have come to the Emergency Room because the love of my life has a severe headache, nausea and extreme sensitivity to light since the night before. Occasionally, she gets such symptoms with severe migraines. This did not get better with migraine meds. Her primary care physician had only to hear the symptoms and see how much pain she was in to say, “Take her to the ER!” In the ER, scans reveal that the cancer has spread to her skull. There is a new spot in the skull. It shouldn’t really be called a spot. It is growing inwards and is large enough to push on her brain, causing her symptoms. Clearly, like bacteria, viruses and cancer cells are prone to do, her cancer cells too have learned to outwit her medicines. Her pain was unbearable until the doctors treated her first with IV, then oral Dilaudid, an opioid drug related to morphine.
Opioids are amazingly effective for short-term treatment of acute pain, but long term use carries significant risk of addiction. Relying on them for the primary treatment for chronic pain has led to the US opioid epidemic. Over 33,000 died due to opioid overdoses in 2015, which is over 4 times the number of such deaths in 1999. The primary driver of the current US opioid epidemic is overprescribing of opioids for chronic pain by physicians over the last 20 years. Now, as a nation, we are trying to pull back on the opioid prescribing, hoping we can reverse the tide of addiction and overdose deaths.
Most physicians who prescribe opioids are well-meaning, wanting to alleviate their patients suffering. Due to their risk of addiction, opioids used to be rarely written for non-cancer pain until the 1990s. Then things changed. Medical common-sense was crushed by a variety of forces outside physicians’ control. And, slowly but steadily, pressure increased on them to make all patients pain-free. A study published in 1986, based on survey (not a randomized-controlled trial) of merely 38 patients with Chronic Non-Cancer Pain (CNCP) treated with opioids for 6 months was among the first things to set the stage for this epidemic. The study by doctors Russell Portenoy and Kathleen Foley concluded, with a few caveats, that long-term opioid treatment for CNCP was a reasonable alternative to surgery or no treatment. The authors suggested that pain relief should be as important a goal of CNCP management as improvement in function.
In December 1995, a small private pharmaceutical company called Purdue Pharma received FDA approval for Oxycontin and launched it in 1996. Though Purdue knew from clinical trials that Oxycontin didn’t really control pain for 12 hours, it marketed it aggressively as such, implying that it was less addictive than other drugs. Eventually, the company would go on to pay $600 million in criminal and civil penalties, but not before making an estimated $35 billion from Oxycontin alone by 2015 when the family that owns it landed on the Forbes richest families list. In 1996, the 10-year old Portenoy study was a boon to Purdue and other makers of opioids.
Purdue’s luck got even better when in August 1997, under pressure from an anti-regulation Congress, the Food and Drug Administration (FDA) provided draft guidance that removed many previous barriers to direct-to-consumer advertising of prescription drug’s. This allowed pharma to start marketing their products on TV and radio. In their marketing, Purdue promoted the finding from the Portenoy study that few CNCP patients were at risk of addiction, though they ignored the various caveats of the study. Among one of the important factors that makes a medical study impactful is the number of patients who were studied. The larger that number, the more impactful the study. Purdue’s (and other opioid manufacturers’) marketing made the Portenoy study, with a mere 38 subjects, more impactful that it ever deserved to be.
I had a visceral reaction when I first met the young ER nurse at shift change. Didn’t they teach you, I thought, that nurses working in hospitals must keep their makeup light and avoid perfume to minimize risk of provoking allergic reactions? Didn’t they teach you to keep your hair short or tied in such a way that it doesn’t get in the way of what you are doing? Didn’t they teach you to keep your nails short to avoid risk of injuring patients? Perhaps, I thought, those traditional instructions were a function of a time when medicine was more hierarchical. Maybe some restrictions really needed to be loosened in in line our egalitarian times. Hopefully, not too many patients get hurt by allergies to perfumes or long, fake nails.
In 1996, the American Pain Society trademarked the slogan “Pain: The Fifth Vital Sign.” Medical students learn the difference between symptoms and signs early in their clinical training. Symptoms are what patients experience. Signs are what can be detected and observed by someone other than the patient. A patient, reporting that he feels warm, is describing a symptom. A high temperature, measured using a thermometer, is a sign. Pain is a symptom, tenderness – the patient’s reaction implying pain when a painful body part is touched – is a sign.
How could pain be a sign? It can’t be observed or measured by a non-patient. Had this deliberate blurring of the line between sign and symptom remained confined to the American Pain Society, this would probably have had little bearing on what was to happen later. But in 1998, the Veterans Administration, the operator of the largest chain of hospitals and clinics in the country, decided to consider pain the fifth vital sign. As did the Joint Commission, the primary agency that certifies and approves healthcare organization in the US.
Then, in 2001, the Joint Commission issued new standards requiring hospitals to ask every patient about any pain, irrespective of whether they came in complaining of pain, and to make treating it a priority. Compliance with Joint Commission standards is supposed to voluntary, but isn’t truly so. The Joint Commission can at most cite a hospital or healthcare organization for deficiencies. It can’t even fine the hospital. However, a loss of certification by the Joint Commission can mean almost instantaneous loss of reimbursement by Medicare, Medicaid and other payers. Thus, Joint Commission certification, ostensibly voluntary, becomes coercive.
Once the Joint Commission was on the opioid as the 5th vital sign bandwagon, hospital administrations and patient satisfaction survey companies started asking all patients in their surveys whether they had been asked about their pain. That question was usually followed up with a question about their satisfaction at how their pain had been treated No one thought for a moment that perhaps what was required for the most satisfying outcome, i.e. the total alleviation of all physical pain, was ultimately detrimental to patients.
Indeed, the Cost of Satisfaction study published in 2012 showed exactly that – compared to low patient satisfaction, high satisfaction meant higher odds of hospital admissions, higher drug costs and higher mortality. Anyone who has thought about happiness knows that happiness is more about managing expectations rather than outcomes. That’s why we have unhappy millionaires.
Because she has been throwing up, and not eating or drinking much since the previous afternoon, by the time we get to the ER, my wife’s thin veins are hard to reach. They have to poke her a couple of times to get blood tests, and another couple of times to establish IV access. When that IV goes bad during her 10-hour stay and they want to try again in order to keep her hydrated and to do one more scan needed to be done and would require administration of contrast/dye, she finally complains about the pain to the nurse. The twenty-something, shrugging her shoulders, replies nonchalantly, “What do you expect? You come to the ER, you are gonna get poked!”
By 2001 we had reset the average American patient’s expectation regarding any and all physical pain, irrespective of whether it caused any functional impairment. To the added frustration of many doctors, at around the same time, large healthcare organizations started using not actual clinical outcomes, but patient satisfaction scores to determine part of doctors’ incomes.
Then 9/11 happened. And we ended up in Iraq and Afghanistan. Most Americans don’t realize that 2.5 million of us were deployed to the Iraq and Afghanistan, with 400,000 service members having been deployed 3 or more times. Many soldiers in infantry roles had to regularly carry loads that we had no clue about. What does this have to do with the opioid epidemic? With multiple deployments and stop loss orders during the mid-2000’s, many soldiers with various injuries had to be made pain-free to allow them to keep functioning. Opioids were extremely effective at doing so. By 2010, according to this Seattle Times report, 14% of soldiers had prescriptions for opiates. That’s 350,000 soldiers. Eventually, these soldiers became veterans and were part of the national resetting of expectations regarding pain management.
The Portenoy study was the first building block of the current opioid epidemic, but it would have had no impact in changing patients’ expectations regarding freedom from pain and doctors’ opioid prescribing without help from Purdue Pharma, the FDA, Department of Defense, VA, Joint Commission, patient satisfaction survey companies and countless executives in large and small healthcare organizations.
Now, we are trying really hard to stop this epidemic and reverse our opioid prescribing trends. The focus of our effort is on trying to encourage a more balanced approach to opioid prescribing so that patients whose pain can only be treated with opioids are not deprived of relief, but the risk of addiction and overdose for most patients with pain is significantly reduced. Even as we try to reduce opioid addiction and opioid overdose rates, I often worry about our very American tendency to swing like a pendulum from one extreme to another. Even the Centers for Disease Control which published its Guideline for Prescribing Opioids for Chronic Pain in 2016, realizes this. The summary of the guideline begins, “This guideline provides recommendations for primary care clinicians who are prescribing opioids for chronic pain outside of active cancer treatment…”
By 10 pm, after multiple scans are completed, a neurosurgeon consulted and blockage of an important vein by the tumor ruled out, the ER doctor comes in, super-empathizes in a way that makes me wonder if he is about to offer condolence – “You are not conveying hope,” I scream inside – and tells us that my wife can go home tonight. She should keep the appointments next day with her oncology team, but she can go home tonight.
The nurse removes the blood pressure cuff and oxygen monitor that were attached to her for 10 hours. It takes her forever to remove the tape holding the IV in place without scratching my wife with her long nails. I take the discharge papers from her. There is no prescription for anything for pain.
I remind the her, “She needs a prescription for pain.”
“She can take Tylenol or Motrin.”
“But her pain wasn’t relieved until she was given Dilaudid in the ER.”
“We no longer give prescriptions for that stuff to patients discharging from the ER.”
There it is, the wild, un-nuanced swing of the opioid prescribing pendulum. A new generation of nurses and doctors, now being taught that prescribing opioids is bad, suddenly can’t think of exceptions where it is the right thing to do. Someone else, not working in medicine, may not have known what to do at that point. I persist.
“My wife does not have low back pain. She has a cancer eating through bone and pressing on her brain. I know about the recent guidelines regarding opioids. Those guidelines are for non-cancer pain.”
The nurse rapidly blinks her eyes with an expression that is a mix of annoyance and ignorance. “Let me talk to the doctor,” she adds.
A few minutes later she comes with a prescription for a couple of days’ supply of Dilaudid.
Just because someone said, “Pain is the 5th vital sign,” we started treating everyone with any kind of pain with multi-refill prescriptions for opioids. Now, as we try to restrain our opioid prescribing, I fear that we will show the same lack of nuance and judgment in application of sound clinical principles and guidelines. And many, including cancer patients, for whom only opioids control their pain enough to let them function, will suffer. Some inconvenience that such patients will face in filling their prescriptions is inevitable and absolutely worth the lives that will be saved from preventing overdoses. Nevertheless, we should try our best as a society to ensure that such inconvenience is truly minor. Not every sedated cancer patient getting discharged from a visit to the ER has an alert physician husband by her side advocating for her. She shouldn’t have to.