The “difficult” patient. The art of doctoring.
It is not an uncommon encounter in medical circles, the “difficult” patient. It is often joked that physicians make for the worst patients. Which begs the question, does the act of questioning a physician’s judgement, as a fellow physician usually can when the playing field is more level, render a patient “difficult”? Or is it personality clashes? Is it the patient who is non-compliant with the doctor’s prescriptions? Do cultural differences play a role in the perception of “difficult” patients? Or do we physicians just not appreciate enough the vulnerability a patient feels which can manifest in ways that give the impression of “being difficult”?
“Doctor…no one here cares about me,” the usually stoic Mr Jefferson told me, his words punctuated by sobs.
6 years prior, Mr Jefferson was in the wrong place at the wrong time. On a sweltering summer afternoon, on his way back from work, he made a pit stop at a gas station to grab some cold water. While at the counter checking out, he suddenly heard what sounded like gunshots. 2 men outside were indeed firing rounds into the shop with a man inside returning fire, an altercation between rival gang members. In the chaos that ensued, he unfortunately caught a stray bullet that left him paralyzed from the waist down.
Mr Jefferson had always been a daredevil with a fascination for extreme sports. He enjoyed skiing, he had gone rock climbing in the Himalayas, he was an avid sky diver. And on that day, through no fault of his, his world was irrevocably shattered.
But Mr Jefferson has learned to adapt to his new reality with the same resolve he had applied to his death-daring rock climbing expeditions. He had come to accept life living with paraplegia. But what was difficult to live with was the pain, which was the reason he was now hospitalized.
“This pain will kill me doctor, I was sent here by my primary care provider because he does not know what else to do for me. But I don’t feel like I am getting the help I need here.”
Mr Jefferson was on a cocktail of medications including strong intravenous narcotics. But he did not feel like it was enough, and his group of physicians including pain specialists felt it may be too much, and dangerous to his life. This discord led to friction between him and the healthcare staff.
He would often be unruly, yelling at the nurses. I would frequently receive calls from the nursing staff that he had refused his other medications, that he was threatening to leave against medical advice, that he had refused labs. And this behavior was in stark contrast to who Mr Jefferson was innately, per the account of all the friends and family who visited him in the hospital. All fueled by a difference of opinion for what constituted an appropriate pain medication regimen.
It is universally agreed that the United States is in the midst of an opioid epidemic that started in the 1990s. The statistics are sobering — in the last two decades, over half a million people have died from opioid overdose. According to the CDC, over 100 Americans die everyday from overdoses involving synthetic opioids, with fentanyl warranting special mention. Fentanyl deaths have increased every year since 2012.
The words narcotics is believed to originate from the Greek word “narke,” which means numbness. Today it is used interchangeably with the word opioids which refers to medications derived from opium, which itself is derived from the poppy plant, Papaver somniferum. The Sumerians, one of the earliest known civilizations, called it Hul Gil, ‘the plant of joy’.
From time immemorial, humans have sought remedies to relieve pain or numb the senses and relieve inhibitions. Hippocrates and physicians of his ilk recognized the powers of the opium poppy, using it to treat a variety of ailments. Nobles and peasants alike turned to it for recreational purposes.
When the unripe poppy seed is cut open, a milky fluid runs out which when dried is called opium (the Greek word opus means juice). This crude opium naturally contains notably morphine, codeine and thebaine. These natural narcotics are generally known as opiates.
With the advent of the modern pharmaceutical industry came the ability to produce a wide range of narcotics in the laboratory (by modifying the opiates), the so called synthetic opioids, among which are notably hydrocodone, oxycodone, hydromorphone, methadone, heroine (2 times stronger than morphine) and fentanyl (100 times stronger than morphine). Many of these, like oxycodone, are legally sanctioned for use in the United States via medical prescriptions. Others like heroine are illegal. Prescription opioids, heroine and increasingly now fentanyl have largely driven the opioid crisis.
The pharmaceutical industry, to which has been ascribed the brunt of the blame for the opioid crisis, continues to be innovative in the production of more and more powerful opioids, with questionable marginal benefit to society at large. Over 500 different opioids have been created. Will an additional variation of morphine on the market improve pain? That is debatable.
But there is plenty of blame to go around. Doctors do not escape culpability because after all, it is by the power of the physician’s pen that many opioids are legally released into the streets.
I recently watched a documentary on Netflix, Painkiller, which details how the pharmaceutical company Purdue shaped the opioid epidemic with its flagship opioid OxyContin. Yet another synthetic spin on morphine. And while Purdue was cast in a negative light, not inappropriately, they did not sell OxyContin directly from the laboratory to patients. Doctors were the medium by which the medications reached patients. And while doctors are not impervious to the temptations of avarice or of the flesh, as portrayed in this documentary, the overwhelming majority prescribe these opioids in good faith — to relieve their patients of suffering. For make no mistake, pain is real.
“My back is killing me doctor, I cannot continue to live like this. I just cannot. It is not fair.”
I had been called to Mr Jefferson’s room for the 4th time that day. The nurses reported to me that he was being disruptive. He had gotten himself into his wheelchair and wheeled himself to the nursing station. His belligerence was a violation of the other patients’ right to a quiet healing environment. I was being asked by the nurses if he could have a medication via IV to sedate him.
Due to his paraplegia, Mr Jefferson had developed wounds on his bottom called sacral decubitus ulcers in medical parlance. These can erode the skin down to the bone causing infections. His wounds were deep but not infected. He had learned to live with the pain they caused. The source of this searing pain for which he was hospitalized was his lower back and imaging had shown that he had severe arthritis of his back. The spine surgeons did not think he was a candidate for surgery, at least not in the inpatient setting. And this compounded his frustration.
“You people will not give me the surgery I need. And you refuse to increase my pain medications. And you think I am difficult? Do not come back to my room if you would not give me more pain medications!” he admonished me.
I felt caught between a rock and a hard place. Mr Jefferson was already on a quite aggressive cocktail of pain medications including the intravenous opioid hydromorphone (dilaudid), a synthetic derivative of morphine up to 8 times more powerful. And we were worried that increasing the dose, a repeated request of Mr Jefferson, would threaten his life by causing him to stop breathing. Which is a judgement call as there is no scientific cutoff dose at which an opioid will cause respiratory arrest universally, and many patients have developed a tolerance for unusually high doses of opioids.
Due to his repeated requests for higher doses of IV hydromorphone and adverse behaviors when these were not honored, there started to be growing concern among the staff that he was simply seeking opioids because he had become addicted. But he was indeed in pain.
The challenge for doctors who increasingly recognize their role in this crisis is how to tell the difference. As custodians of the public trust, it is incumbent on physicians to protect patients from these highly addictive substances, as is their duty to relieve patients of suffering. And often the lines are blurred because pain, while it can be suggested by some objective criteria like an increased heart rate, is a largely subjective. It is virtually impossible to know, looking from the outside in, just how much pain another person is experiencing.
And this is a piece of the art in medicine, exercising the judgement needed to perform the balancing act between the good and harm of action or inaction.
I am reminded of another Netflix documentary, Taking Care of Maya. Maya was 10 years old and had been diagnosed with complex regional pain disorder, a disease which was causing an intractable, disabling pain. It was too much to bear for her mother who, when Maya was hospitalized at a Florida hospital, advocated tirelessly for her to receive ketamine. Which alarmed the doctors who now became concerned that Maya’s mother was medically abusing her. The diagnosis was questioned, the use of ketamine was questioned. They may have felt Maya’s mother and perhaps even Maya herself were being “difficult.” This all culminated in Maya being forcibly separated from her family for months and in a state of despair, feeling helpless against the behemoths of the medical and legal systems, Maya’s mother committed suicide.
It is not easy I would admit. It was difficult for me. Multiple questions running through my mind. Where do I draw the line? Do I keep increasing the doses of the medications he is receiving for this chronic pain? Are they truly effective for this pain which is unabating in spite of increasing medication doses or is the euphoria we know they can cause contributing to the sense of relief Mr Jefferson feels?
And to what end? What happens after he inevitably leaves the hospital and cannot receive these strong narcotics, but is still in pain? Will that lead him to seek street drugs to fill this void? Am I indirectly fueling this opioid epidemic? Am I fulfilling my hippocratic duty to Mr Jefferson to first do no harm? And am I fulfilling my moral duty to him to relieve him of suffering? Does the reticence physicians now have about prescribing opioids do a disservice to patients many of whom are living with indescribable pain? Also, will not providing opioids on request affect patient satisfaction, a metric that has been tied to hospital reimbursement and physician compensation, and which has inadvertently compounded the current crisis?
But whatever sense of internal strife I was having paled in comparison to what Mr Jefferson must have been going through. Here was a man, otherwise pleasant of character, who had been an innocent bystander when senseless violence irrevocably shattered his life. He had lost his job and his marriage. He had made peace with the reality of the life he could control. But now because of circumstances beyond his control, because of an unrelenting pain that would allow him no reprieve, he was being perceived by the medical establishment as “difficult.”
The fountain of empathy for a physician must never run dry. People of different personalities, from various walks of life, become united in the vulnerability that illness causes. Behind the disease is a person who is afraid, is uncertain, who can get frustrated as every human is wont to. No patient willingly comes to the hospital with a desire to be disruptive or not follow recommendations.
As a physician, it is important for me to remember this; to always consider the person behind the illness and all the circumstances of his life which inform his disposition. The appreciation of the totality of Mr Jefferson. In the same breath, it is important to apply caution to the decision to administer opioid medications within the hospital and without, for the ramifications are far reaching. It is the art of doctoring, beyond the science of pathology. And for the sake of my patients, it is just as important.
