Pain Patients Fed Up with Poor Treatment in Hospitals
/By Pat Anson, Editor
Eight out of ten pain patients feel hospital staff have not been adequately trained in pain management and over half rate the quality of their pain care in hospitals as either poor or very poor, according to a new survey.
Over 1,250 acute and chronic pain patients participated in the online survey by Pain News Network and the International Pain Foundation (IPain). The survey findings -- supported by the comments and experiences of hundreds of pain patients -- amount to a stinging indictment of hospital pain care in the United States.
It’s not uncommon for pain patients to suffer from a variety of chronic conditions and diseases, and many told us they've been hospitalized several times.
Asked to rate the overall quality of their medical care in hospitals, pain patients were fairly even-handed in their ratings. About a third said it was good or very good, 37% said it was fair and 29% said it was poor or very poor.
But some said they were so badly treated and traumatized by the experience, they’re afraid to go back.
“It's so bad that I will not seek treatment in an ER or hospital unless I really feel like my life is in jeopardy. They do not get it, they do not listen, and they do not care,” is how one pain patient put it.
“I refuse to go to ER. It will end up killing me because I know how sick I am, but I would rather die than deal with ignorant, condescending doctors and nurses,” wrote another.
Several healthcare providers also wrote to us, admitting pain patients were often treated poorly.
"Many of my colleagues would refuse to medicate patients in pain, especially women in pain. They had many misconceptions that women were attention seeking, or exaggerating their pain. They also believed that even short term opioid therapy would 'create' addiction," wrote a nurse.
"I am a nurse anesthetist as well as a patient with fibromyalgia and severe arthritis," said another nurse. "The USA does a horrible job treating chronic pain. Too many suffer and too many commit suicide because of this."
When asked to rate only the quality of their pain treatment, the survey results were decidedly negative. Over 52% said their pain treatment in hospitals was poor or very poor, 25% rated it fair, and only 23% said it was good or very good.
Many patients complained that their pain went untreated or under-treated, even though pain was usually the primary reason they were admitted to a hospital.
“I was at the ER once crying because I was in so much pain and I had a nurse tell me to shut up and cut the act. Never been treated so inhumanely,” said one pain patient.
“I've had to fight for proper pain management every time I've been in a hospital in the last 10 years. The DEA created this problem and the CDC is only reinforcing it. It's a travesty,” wrote another.
“If I were an animal and was treated the way I was after surgery my owner would have been arrested for cruelty to an animal. As a human being, don't I deserve to be treated at least as well as an animal?” asked another pain sufferer.
"I've stopped going to hospitals even if I feel I'm having another stroke or heart attack, due to the horrific lack of pain control," wrote a patient who has multiple autoimmune diseases. "I'd rather die than be judged or be left writhing in pain."
"Pain is under-treated and at times downright ignored. I believe that this is leading to the cause of chronic pain in some patients," wrote another patient.
There is some evidence to support the claim that untreated or under-treated acute pain can turn into chronic pain. A study published in the Lancet warned that “an alarmingly high number of patients develop chronic pain after routine surgery.”
Yet when pain patients were asked in our survey if their pain was adequately controlled after surgery or treatment in a hospital, nearly two-thirds (64%) said no and only 34% said yes.
“There is research demonstrating that the intensity of acute postoperative pain correlates with the risk of going on to develop chronic pain. This suggests that aggressive early therapy for postoperative pain is critical for preventing the pain from turning chronic,” says Cindy Steinberg, National Director of Policy and Advocacy for the U.S. Pain Foundation.
“Minimizing and deemphasizing the focus on controlling acute pain in hospital settings is likely going to set us up for potentially dramatic increases in the number of Americans with long term chronic pain.”
By treating acute pain so poorly, could our hospitals and emergency rooms be mass-producing future chronic pain patients?
And, if so, what can be done to stop it?
One solution – overwhelmingly supported by respondents to our survey – is better education in pain management for doctors, nurses and other healthcare providers.
Asked if they feel hospital staff are adequately train in pain management, nearly 83% of pain patients said no and just 9% said yes.
“All staff should be educated and able to understand the difference between opioid dependency and opioid abuse," wrote one pain patient. "Over the last decade I have witnessed the quality of care for pain management plummet, and I have also observed increased chronic mistreatment of pain patients.”
"I am a nurse. Anyone who has chronic pain is labeled automatically as a drug seeker. The under-education about chronic pain is alarming. The way truthful patients are treated is just deplorable," wrote another pain sufferer.
"I think that hospital staff members are trained to be afraid of pain patients. They know what is necessary to treat pain, even chronic pain, but the fear that is instilled in them by oversight committees, the DEA, and Congress that all opiod pain prescriptions lead to drug addiction has led them to be afraid of treating pain patients. Education is the key," wrote another pain sufferer.
“In my 20+ years of having CRPS (Chronic Regional Pain Syndrome), I have never been to an ER where the staff even knew what it was,” wrote one of several readers who lamented that doctors and nurses are often ignorant about CRPS and RSD (Reflex Sympathetic Dystrophy).
“I have experienced this myself. The nurses didn’t understand my pain conditions and how my body reacted. They didn’t understand that I had additional needs," said Barby Ingle, president of IPain, who suffers from RSD. "I have recently had a provider ask, 'Does it really hurt that bad?' while doing a procedure on me under local anesthesia. I was screaming, crying, and moving so much that a normal patient gets 7 anesthetic shots. For me it took 28 and those were extremely painful.
“For a pain patient to go to a hospital for pain care and still have their pain unaddressed, under-treated, or misunderstood is clear evidence that we need better education for hospital staff."
The lack of pain education in medical schools is not new. A 2012 study published in the Journal of Pain called pain education "lackluster" in the U.S. and Canada. The study of 117 medical schools found that less than 4% required a course in pain education and many did not have any pain courses.
Despite that, opioid prescribing guidelines released this month by the Centers for Disease Control and Prevention only briefly mention the agency will "work with partners to support clinician education" and even that vague promise is only focused on reducing opioid use. The same is true for the Food and Drug Administration, which recently announced several sweeping changes in its opioid policies, none of which address physician education.
Only the recently adopted National Pain Strategy (NPS) acknowledges that "most health care professions’ education programs devote little time to education and training about pain and pain care," and suggests several ways to improve them. But it's unclear how the NPS will ever be implemented, since it has no budget and relies on major policy changes involving medical schools, accreditation groups, healthcare providers, and regulatory agencies.
"I think it’s true that many hospital providers are poorly educated about pain management, and, especially if the patient’s condition is complex, understanding what is going on and finding a good solution can be very challenging,” said Bob Twillman, PhD, Executive Director of the American Academy of Pain Management, who believes providers need more empathy, as well as education.
"In my experience, I found that hospitalized patients were much more satisfied if they just felt like someone understood them and their pain, expressed a sense of caring, and made a strong effort to help. For those patients, even if you weren’t able to get their pain controlled for a little while, they really appreciated the fact that someone believed them and was trying to help. Sometimes, it’s as much about caring for the person with pain as it is treating the person with pain."
To see the complete survey results, click here.
