By Pat Anson, Editor
If there’s one thing that gets a pain patient frustrated or angry, it’s being labeled as an addict or a “drug seeker” in search of opioids. So imagine hearing that from a doctor or nurse at a hospital where you’ve gone for treatment because your pain is out of control or unbearable.
But it happens all the time.
“I refuse to go to the ER for pain. Unless I feel I'm absolutely dying, I will not go. It isn't worth being made to feel like I'm only ‘putting on a show’ or I'm a junkie just trying to get high,” one pain sufferer told us. “In every situation I've experienced in going to the ER with a complaint (of) pain, I've been made to feel less than human and was automatically met with suspicion.”
“I was screamed at and humiliated by the front desk nurse in front of a whole lobby of people for having pain and no medication or treatment. Had nowhere to go and didn’t know what else to do. She was so angry at me, I was shocked. I couldn’t believe it,” said another pain patent.
“My husband experienced a ruptured appendix at home,” wrote one woman. “His hospital experience was a nightmare! I had to stay at the hospital 24/7 just to make sure that his pain was kept under control. He was ridiculed, humiliated and not believed to the point that he was ready to walk out.”
Those are some of the typical responses we received in a survey of over 1,250 acute and chronic pain patients by Pain News Network and the International Pain Foundation (IPain). Nearly three out four patients surveyed said they currently take an opioid pain medication.
When asked if they ever felt labeled as an addict or drug seeker by hospital staff, nearly half (46%) said they often were and over a third (34%) said it happens sometimes. Only 20% of pain patents said they had not been labeled.
“I was treated like a drug seeker and humiliated in front of the staff and patients. This has happened several times,” wrote one pain sufferer.
“I was insulted, berated, and humiliated by hospital staff while seeking help for my chronic pain conditions,” said another.
“I have panic attacks about going to the hospital because I have been treated so badly,” wrote one woman. “I've heard nurses say, ‘She's only here for the free meds.’ I've had nurses and doctors yell at me when I explain my pain symptoms and ask for something simple like a pillow, or an IV in a different spot. I've been told, ‘You’re in a hospital. You are supposed to be uncomfortable!’”
“Doctors have called me a liar when it comes to why I have previously been in the ER or hospital. I have been told I am no better than a street addict,” wrote a patient who has pancreatitis and lupus.
“The nurses that treated me saw on the state Rx monitoring website I was taking opioids (although I had already told them). They shut the curtain and told me to take a nap! I was not seen by a doctor and was told I was a drug seeker,” wrote a patient who was seeking treatment for abdominal pain. “I got up and left and a couple weeks later was diagnosed with diverticulitis and a serious infection that could have killed me. I had 2 1/2 feet of my intestine taken out.”
Asked if doctors were reluctant to give them opioid pain medication while they were hospitalized, 38% of pain patients said it happens often and 36% said sometimes. Only 26% said no.
“I had a doctor in an emergency room situation one time during an episode I was having, who actually stood in the open doorway of my room, I was still in the ER, and yelled at me as loud as he could, that he wasn't giving me any pain medicine,” said one patient.
“I understand why opioids are scary to prescribe and I do understand that there are a lot of people just looking to get high. But doctors and hospitals discriminate (against) all of us with real medical problems and it’s inhumane,” wrote another.
“The nurses and doctors need to understand the difference between the 98% who are not drug seeking and be able to address the patients’ needs who present in front of them,” said Barby Ingle, president of IPain. “Treatment based on misconceptions and poor pain understanding is not ethical or appropriate. We must create policies that support the pain patient and their individual needs.”
Even patients who do not take opioid medication said they were labeled as addicts or drug seekers -- just as often as those who take opioids.
“I am really sick of being looked at as if I am there for dope meds. Not all of us is addictive or crazy about pain meds,” wrote one patient.
“I am not a bad person. I am sick. I did not do this to myself, it was done to me in childhood trauma. I was abused, please don't abuse me more,” pleaded another patient.
“Everyone needs to be treated with compassion, respect, and have their concerns listened to. This is not happening. We need to start holding people accountable for how they treat people in pain,” says Janice Reynolds, a pain sufferer and retired palliative care nurse.
“I would encourage everyone when you have been to the ER or in the hospital to write a letter to the CEO of the hospital, the vice president of nursing, and the medical and nursing managers of the department you were in. Tell them how you were treated, how they made you feel, what happened that didn’t work, and try to get names and write them down. Do this for good treatment as well as bad treatment,” Reynolds wrote in an email Pain News Network.
“I have actually done this and while one letter may not be effective, you are a costumer and if they get several letters they may start seeing there is a problem. I know at the hospital I worked at, we were always told about a positive or negative comment which mentioned us by name.”
Another way to lodge a complaint – or compliment – is in patient satisfaction surveys, which Medicare requires hospitals to conduct to prove they provide quality care. Medicare rewards hospitals that are rated highly by patients, while penalizing those who do not.
However, Maine Sen. Susan Collins (R) and 25 of her colleagues in the U.S. Senate have sent a letter to Health and Human Services Secretary Sylvia Mathews Burwell asking that Medicare stop asking patients about their pain care because that could lead to opioid overprescribing.
“We are concerned that the current evaluation system may inappropriately penalize hospitals and pressure physicians who, in the exercise of medical judgment, opt to limit opioid pain relievers to certain patients and instead reward those who prescribe opioids more frequently,” the letter states.
Pain patients say that’s nonsense. When we asked if patients should still be asked about their pain care in hospital satisfaction surveys, over 92% said yes and less than 3% said no.
“I find this notion that we would stop asking patients how well their pain was controlled in the hospital appalling,” said Cindy Steinberg, National Director of Policy and Advocacy for the U.S. Pain Foundation. “Dropping these questions from the Medicare survey sends the message that pain relief is no longer part of a quality-of-care measure that hospital staff need be concerned about. Controlling patients’ pain is just not that important any more. Is this really where we want to go?
“We have moved from the war on drugs to the war on pain patients and now to the war on the very concept of appropriately treating pain. This is a shameful perspective that condones a cavalier and uncaring attitude toward the pain and suffering of fellow human beings. I wonder what the Senators who signed this letter would say about the responsibility for doctors and nurses in hospitals to relieve pain if it was their loved ones or themselves who was experiencing unrelieved pain in the hospital?”
A request to Sen. Collins’ office for an interview or statement on the survey findings went unanswered.
To see the complete survey results, click here.
Tomorrow we'll see how pain patients feel about non-opioid medications and whether they are effective in providing pain relief.