My Story: Make Your Doctors Accountable

By Crystal Moody, Guest Columnist

From a full-time medical education coordinator to full-time chronic pain patient, I am now trying to maneuver my way through the world from the other side of the operating table. And it is a completely different ballgame. Gaslighting, patient-blaming and condescension are daily players in this game.

I live with chronic back and neck problems, some caused by medical errors, and have undergone multiple spinal surgeries and procedures. I was legally labeled as “physically disabled” in 2018 by Social Security, but it took three years in California and I had to hire an attorney to make that happen. Every player in this game gets paid, except the patient.

It was the beginning of 2016 when I realized I was never going to be able to work in medicine in my former capacity again. However, even if my body was broken, my mind was not. I re-enrolled in college, wanting to keep my mind fresh in between surgeries.

In 2018, I completed my BA in Organizational Leadership at Azusa Pacific University (online and from bed). I then completed my Masters in Public Health from Los Angeles Pacific University in 2021. I am now pursuing a doctorate in Social Work.

I hope that my work and life experiences will allow me to help others, in the same ways that I have needed help. I want to help people with chronic, debilitating and life-threatening illnesses.

CRYSTAL MOODY

In the beginning of my illnesses, I did not understand why I could not just let things go. As time passed, I realized it was because I was witnessing doctors, specialists and clinicians who had no clue what they were doing. Even worse, I was beginning to realize that every doctor I consulted with seemed to count on the fact that I would not have any medical knowledge. They tried to placate or downplay my concerns, and send me on my way.

Initially, I thought it was because of my own ignorance as a patient. But in appointment after appointment, the truth became blatantly clear. If I had had no educational, personal, and/or professional experiences in medicine, they could have fooled me in every visit, every time.

My goal now is to train our doctors and specialists to be more patient, kind, empathic and ethical, by teaching patients how to be investigators of their own health information. Patients need to learn how to advocate for their own health during an era of “sloppy medicine.”

One such lesson is to teach patients where and how to hold their doctors and clinicians accountable. Never check hospital or medical practice reviews of your doctor. Those reviews are biased. As an ex-hospital employee, I can tell you who gets those reviews. Patients whose outcomes are successful and more likely to give positive reviews are noted by hospital employees. They send those patients the evaluation forms.

In the hospital where I worked, many evaluation forms were completed by other hospital employees. Some employees were even patients of the doctors they work with. How is that not a conflict of interest?

Always check for independent reviews through online sites such as HealthGrades. They are much better resources for patients with complex medical histories. You need to know who you are going to be working with, and it is immensely helpful to see other patients’ unbiased reviews of doctors. No one is a better professional in being and knowing you than YOU.

It should no longer be a one-way-street, with doctors doing all the talking during appointments. If patients know the right questions to ask, they will be better prepared to challenge the doctor for answers and direction. Patients deserve to get the most out of every visit. Additionally, I encourage you to observe if the doctor has a partner or assistant join them in your visits.

You should never go to an appointment alone, if you do not want to. If someone can’t physically be there, you can also make a FaceTime call to have a second set of “eyes and ears” at your appointments. The clinicians document your visits and sometimes bring reinforcements. You should, as well. Your input is valuable, and you should be documenting as much or more than your doctor.

The sad fact is that you are worth more to a doctor when you are sick than when you are well. They send you back and forth between their colleagues and specialists. It is time to cancel the hamster wheel of medicine and rebuild it through decency and transparency, with truly informed consent by both patients and doctors.

A poor doctor should not have the same status and pay as a good doctor, but they often are. What keeps a doctor honest if they earn the same despite their poor patient outcomes? Ultimately, for doctors to perform better, patients must be willing to hold them accountable when necessary.

Disabled patients should know there is no guilt or shame in disability, and that disability does not equal stupidity. There is opportunity for positivity in every negative situation.

Crystal Moody lives in California.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

My Story: Hospitals Are Undertreating Pain

By Michael Swift, Guest Columnist

Right now, as I type this, I can barely finish because I just got home from a surgery in my abdominal area. I won't get into the details, but a lot of cutting was done, and I was discharged after an agonizing hospital stay. I was given Tylenol and Naproxen for post-surgical pain.

I am now reclined in bed at home and suffering from post-op pain because a major hospital in a city of a quarter million people is undertreating pain. This is the new norm for most hospitals here in Texas.

My wife and I lived in beautiful central Oregon all our lives. We ended up vacating the house we rented and could find no place to live in the entire state that was affordable to us. For family reasons, we moved to the Texas Panhandle.

My wife, seeking a new pain specialist in Amarillo, was denied and bawled-out two times by doctors. She was told by one verbatim: “We don't push dope here. If you want drugs, go to the north side of town."

I almost walked back in after she told me what this doctor had said to her, to punch him in the mouth. But it would do no good trying to help her from a jail cell. She was visibly upset, in tears, humiliated and so hurt. She is a 67-year-old senior with spinal stenosis and a bone disease that is destroying her vertebral column. Even with stellar remarks by her former providers as a "model patient with legitimate pain,” she was still an object for these millennial brats to verbally spit upon.

When living back in Oregon, my wife and I had a wonderful provider in Bend and our lives were fully active. We failed however to do our homework before moving to Texas. When we arrived, we realized that the Texas Medical Board and certain medical groups and doctors decided they wanted to solve the huge drug abuse problem.

The real problem here has been massive amounts of illicit fentanyl, comprising about 75% of overdose deaths, along with heroin, ecstasy and many other street drugs pushed in by the Sinaloa drug cartel. Nevertheless, the medical board went after the doctors and patients because it was easier than addressing the real problem.

A Broken Healthcare System

To say the least, I am saddened, upset and feeling a huge weight of condemnation from individuals here in the medical field. What a broken and detached healthcare system.

We are both leaving Texas for a nearby state, already set up with a new provider there, who is willing to take a good look at her without judgement. I am not leaving though, until I file a complaint against both pain management providers for their unethical, cruel treatment and libelous slander -- with the use of profanity to my wife's face -- all confirmed by the nurse in the exam room.

I will also file a complaint with the Texas Medical Board for the experience I had as a surgery patient. It will fall on deaf ears, but I won't stop until I get a response. To those of you out there who are also suffering and abandoned, take any and EVERY measure available to control your pain, which is robbing you of your life. You have no other choice.

There is a terrible and frightening experience awaiting those who are destined to go under the knife in hospitals that have overreacted to the "opioid crisis” by implementing a new policy of completely abstaining from administering any narcotic pain medication to post-surgical patients.

I suppose I could have screamed at the top of my lungs to demand pain relief, but who wants that on their record. Or worse, to be blacklisted. Thank God I have an alternate source of pain relief, but I am still astounded.

I am a veteran of nine prior surgeries, all of them done over 20 years ago. When I was in the hospital after those surgeries, I was asked by a nurse what narcotic I wanted to choose for pain relief. After that, I stayed healthy, avoided more surgeries and interpreted the many stories I heard about "Tylenol for post-op pain" as nothing but false tales and fear-mongering.

To all and any of you who posted such statements, I sincerely apologize. You were telling the truth.

Michael Swift lives with degenerative disc disease, arthritis and severe migraines.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org

Hospitals Face Staff Shortages as Covid Surges

By Lauren Weber, Phil Galewitz and Andy Miller, Kaiser Health News

The Cleveland Clinic in Weston, Florida, on Jan. 11 was treating 80 covid-19 patients — a tenfold increase since late December. Nearly half were admitted for other medical reasons.

The surge driven by the extremely infectious omicron variant helped push the South Florida hospital with 206 licensed beds to 250 patients. The rise in cases came as the hospital struggled with severe staff shortages while nurses and other caregivers were out with covid.

The challenge is finding room to safely treat all the covid patients while keeping staffers and the rest of patients safe, said Dr. Scott Ross, chief medical officer.

“It’s not a PPE issue,” he said, referring to personal protective equipment like masks, “nor an oxygen issue, nor a ventilator issue. It’s a volume issue and making sure we have enough beds and caregivers for patients.”

Nationally, covid cases and hospitalizations are at their highest levels since the pandemic began. Yet, unlike previous covid surges, large portions of the patients with covid are coming to the hospital for other reasons. The infections are exacerbating some medical conditions and making it harder to reduce covid’s spread within hospital walls, especially as patients show up at earlier, more infectious stages of the disease.

Although the omicron variant generally produces milder cases, adding the sheer number of these “incidental” hospitalizations to covid-caused hospitalizations could be a tipping point for a health care system that is reeling as the battle against the pandemic continues. Rising rates of covid in the community also translate to rising rates among hospital staffers, causing them to call out sick in record numbers and further stress an overwhelmed system.

Officials and staff at 13 hospital systems around the country said that caring for infected patients who need other medical services is challenging and sometimes requires different protocols.

Dr. Robert Jansen, chief medical officer at Grady Health System in Atlanta, said the infection rate in his community was unprecedented. Grady Memorial Hospital went from 18 covid patients on Dec. 1 to 259 last week.

Roughly 80% to 90% of those patients either have covid as their primary diagnosis or have a health condition — such as sickle cell disease or heart failure — that has been exacerbated by covid, Jansen said.

Although fewer of their patients have developed pneumonia caused by covid than during the major spikes early last year, Grady’s leaders are grappling with high numbers of health care workers out with covid. At one point last week, Jansen said, 100 nurses and as many as 50 other staff members were out.

In one of New Jersey’s largest hospital systems, Atlantic Health System, where about half the covid patients came in for other reasons, not all of those with incidental covid can be shifted into the covid wards, CEO Brian Gragnolati said. They need specialized services for their other conditions, so hospital staffers take special precautions, such as wearing higher-level PPE when treating covid patients in places like a cardiac wing.

At Miami’s Jackson Memorial Hospital, where about half the covid patients are there primarily for other health reasons, all patients admitted for covid — whether they have symptoms or not — are treated in a part of the hospital reserved for covid patients, said Dr. Hany Atallah, chief medical officer.

Regardless of whether patients are admitted for or with covid, the patients still tax the hospital’s ability to operate, said Dr. Alex Garza, incident commander of the St. Louis Metropolitan Pandemic Task Force, a collaboration of the area’s largest health care systems. He estimated that 80% to 90% of patients in the region’s hospitals are there because of covid.

In Weston, Florida, the Cleveland Clinic is also having a hard time discharging covid patients to nursing homes or rehabilitation facilities because many places aren’t able to handle more covid patients, Ross said. The hospital is also having difficulty sending patients home, out of concern they would put those they live with at risk.

Hospital Infections

All this means there’s a reason that hospitals are telling people to stay away from the ER unless it’s truly an emergency, said Dr. Jeremy Faust, an emergency medicine physician at Brigham and Women’s Hospital in Boston.

The sheer number of patients who are showing up and don’t know they have covid during this surge is frightening, Faust said. As more incidental cases pour into hospitals, they pose a greater risk to staffers and other hospital patients because they are typically at a more contagious stage of the disease — before symptoms begin, Faust said. In previous covid waves, people were being hospitalized in the middle and later phases of the illness.

In Faust’s analysis of federal data, Jan. 7 showed the second-highest number of “hospital onset” covid cases since the pandemic began, behind only an October 2020 outlier, he said. But this data accounts for only people who were in the hospital for 14 days before testing positive for covid, Faust said, so it’s likely an undercount.

A KHN investigative series revealed multiple gaps in government oversight in holding hospitals accountable for high rates of covid patients who didn’t have the diagnosis when they were admitted, including that federal reporting systems don’t publicly note covid caught in individual hospitals.

“People in the hospital are vulnerable for many reasons,” said Dr. Manoj Jain, an infectious disease specialist in Memphis, Tennessee. “All of their existing underlying illnesses with multiple medical conditions — all of that puts them at much greater risk.”

The ER in particular is a potential danger zone amid the current crush of cases, Garza said. He recommended that patients wear high-quality masks, like a KN95, or an N95 respirator. According to The Washington Post, the Centers for Disease Control and Prevention is weighing whether to recommend that all Americans upgrade their masks during the omicron surge.

“It’s physics and math,” Garza said. “If you’ve got a lot of people concentrated in one area and a high viral load, the probability of you being exposed to something like that if you’re not wearing adequate protection are much higher.”

If patients can’t tolerate an N95 for an entire day, Faust urges them to wear upgraded masks whenever they come into contact with hospital staffers, visitors or other patients.

Dr. Dallas Holladay, an emergency medicine physician for Oregon’s Samaritan Health Services system, said that because of nursing shortages, more patients are being grouped together in hospital rooms. This raises their infection risk.

Dr. Abraar Karan, an infectious diseases fellow at Stanford, believes all health care workers should be mandated to wear N95s for every patient interaction, not just surgical masks, considering the rise in covid-exposure risk.

But in the absence of higher-quality mask mandates for staffers, he recommended that patients ask that their providers wear an N95.

“Why should we be putting the onus on patients to protect themselves from health care workers when health care workers are not even going to be doing that?” he asked. “It’s so backwards.”

Some hospital workers may not know they are getting sick — and infectious. And even if they do know, in some states, including Rhode Island and California, health care workers who are asymptomatic can be called back to work because of staffing shortages.

Faust would like to see an upgrade of testing capacity for health care workers and other staff members.

At Stanford, regular testing is encouraged, Karan said, and tests are readily available for staffers. But that’s an exception to the rule: Jain said some hospitals have resisted routine staff testing — both for the lab resource drain and the possible results.

“Hospitals don’t want to know,” he said. “We just don’t have the staff.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Memories, Medications and Hospital Horrors

By Tom Parker, Guest Columnist

Some things you never forget. Your mother’s love, your favorite teacher, your first home run (oh, that’s right, I’m 61 and that still hasn’t happened yet), your first date, your first kiss and your wedding.

Christmas to the Parker family is also memorable for many reasons. My delightful wife and I have always sought to make Christmas a precious time for our family. We listen to Christmas music off and on throughout the year, but nonstop in the fall and winter. Bing Crosby and Karen Carpenter mellifluously bless our home with the glorious sounds of Christmastime.

So why do I not remember a season of joy that just ended a month ago?

For several weeks, I had been experiencing pain and an inability to fully empty my bladder. I have quite a few health problems, so I just chalked this up as just another one and pretty much ignored it as it continued to get progressively worse.

My wife and son were on a long trip to take my youngest daughter back to college. I was home alone and finally felt the need to call my doctor about the urinary retention. My doctor’s sagacious nurse urged me to immediately go to the ER, so I called for an ambulance.

I was in St. Peter’s Hospital in Albany for almost a week while an interminable number of tests were conducted to determine what was wrong. I was not allowed any of my normal medications, pain or otherwise, or food or liquids while the initial tests were conducted. Nothing whatsoever passed my lips.

TOM PARKER

When my normal medication regimen finally resumed, I found out very quickly that I had to specifically request an oxycodone tablet when meds were dispensed or I wouldn’t get one.

Which leads me to very distinct memories of my roommate for the rest of my stay. A very brawny young man of 30 or so, a massively-muscled professional bodybuilder, was wheeled into the room and into the next bed. He was just out of elective bilateral double knee replacement surgery. Forgive me for listening as his mother and wife conversed waiting for him to come out of anesthesia.

PNN readers are all too acutely aware of how pain medications are no longer properly given for serious conditions -- which would seemingly include bilateral double knee replacement. As my compatriot emerged from anesthesia, it was very audibly obvious that he was quite understandably in unimaginable agony. Multiple nurses and techs rushed in and out, and at one point a resident was summoned as the young man was having difficulty breathing.

There was serious conversation about rushing him back into surgery when I heard a loud thump. My roommate had hit his head against the headboard, knocking himself out. His relatives argued with the nurses and resident about what pain medicines should be administered during his recovery.

We live in an ungodly, strange and insidiously cruel perverse world!  When medical professionals seriously consider Tramadol as the most viable and appropriate medicine at such a time, we have reached a new low standard of medical barbarity in these United States of America.

Paging Dr. Sessions, paging Dr. Sessions….

Yes, Tramadol is a somewhat effective pain reliever for some people. But for an operation as critically complex as bilateral double knee replacement surgery?   It never was effective for me and it engendered extreme vomiting for several days.

The agonized screams of that young man over three days still haunt my sleep today -- hopefully, not again tonight.

All of us are familiar with the 1 to 10 pain scale and how it often seems wholly inadequate for describing the pain that many of us feel every day. When the young fellow awoke from his self-induced head to the headboard knockout, he was asked what his pain level was at that moment. Three numbers unmistakably rang out, loud, clear and true: “555! What the blank do you think?”

His anguish was finally lessened by multiple doses of Dilaudid, both orally and intravenously. He was also administered Celebrex for inflammation, and oxycodone. I was a very personally-interested witness to this for several days.

He and I left the hospital at almost the same time, me to go home with my beloved, and he to a rehabilitation facility nearby. His last pain attestation before leaving was “10 or 12.” I was utterly appalled to hear him say that “I will do it all over again” if he were unable to resume his bodybuilding career after rehabilitation.

Well, I have had my follow-up visit with my GP now. He renewed my oxycodone prescription without even asking me about it. For that, I am eternally grateful to God and to my kindhearted physician. He explained to me that he was very glad that I had listened to his nurse’s urging to go to the ER.

I asked him, “Why are my memories of Christmas just a month ago so very foggy?”

It was then my physician made it very clear to me, for the first time, that I had almost died from blood poisoning and kidney failure.

Tom Parker was born in beautiful Charleston, South Carolina. He currently lives in the Albany region of frozen upstate New York with his wonderful Vermont wife of 30 years, Kelly Sue. They have four adult children. Tom has multiple spine problems, including severe cervical spinal stenosis, osteoarthritis, and was born with just one kidney.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Critics Say DEA Plan Could Worsen Opioid Shortages

By Pat Anson, Editor

Pain sufferers and patient advocates are overwhelming opposed to plans by the U.S. Drug Enforcement Administration to further restrict the supply of opioid medication to punish drug makers that allow too many of their painkillers to be diverted and abused. Health organizations also caution that the proposal could worsen an acute shortage of pain medication in the nation’s hospitals.

Over 1,500 people left public comments in the Federal Register on the DEA’s plan to change the rules governing opioid production quotas. Under the proposal, the DEA could arbitrarily reduce the amount of opioids a company can make -- even if it has no direct role in the diversion or abuse.

"It’s a common sense idea: the more a drug is diverted, the more its production should be limited," said Attorney General Jeff Sessions. 

But critics say the plan will not prevent opioid abuse and will likely harm patients.

“The DEA has no business deciding how much valid medicine can be produced. The doctors prescribing the medicine should dictate the amount. The DEA is going to cause a crisis,” wrote Tina Liles.

“Reducing opiate medication has done nothing to help the rate of overdose deaths in this country because opioid prescriptions are not the issue in this country it is illicit fentanyl and heroin,” said Nicole Garage.

“Limiting access to the only medication that helps to control severe, intractable pain will not stop the crisis; those who abuse or sell drugs illegally have not stopped due to current quotas and will not stop with any new quota reductions,” said James Loranc.

“The logic (behind) this DEA proposal is completely untested, unproven, and unsupportable. The shortages being seen in hospitals and by pain patients will only get worse with further DEA cutbacks, leading to more mistakes, waste, and higher costs, not to mention additional pain,” said Valerie Padgett Hawk, Director of a Coalition of 50 State Pain Advocacy Groups.  

Hospitals Rationing Opioids

The shortages mainly involve injectable opioids such as morphine, hydromorphone and fentanyl, which are used to treat acute pain in patients recovering from surgery or trauma. Hospitals have been forced to ration opioids or use other pain medications that are not as effective.

“With limited availability of some opioids, operations may have to be postponed or cancelled.  In some cases, this could prove life‐threatening to the patient,” wrote Janis Orlowski, MD, Chief Health Care Officer for the Association of American Medical Colleges. “We urge the DEA to remember that opioids are also an important part of treatment regimens for controlling acute and chronic pain in a variety of patients – including trauma, postoperative and patients with advanced stage cancer – and any limits on quotas should not negatively impact access for patients that have a legitimate and critical need for these medications.”  

“Please, I beg you, don't do this. My dear friend Sarah takes painkillers for her rheumatoid arthritis. Even with the medication it's terrible; without it, I have no doubt she'll kill herself. Her mental health is already fragile,” wrote Kelsey Hazzard. “This regulation will destroy her.”  

“For the love of God let the doctors and pharmacists handle prescribing and filling prescriptions and allow the patients and doctors to worry about how much opioid pain medication they need to take. This is none of the DEA’s concern!” wrote Brandon Tull, a disabled police officer who shared the tragic story of Jennifer Adams, a Montana pain patient who recently committed suicide.

“That suicide will probably be the first in a long line if you continue this attack upon innocent chronic pain sufferers!”

The public comment period on the DEA proposal ended May 4th. The public was given only 15 days to comment in the Federal Register on the rule change. Public comment periods are usually between 30 and 60 days long, with some taking up to 180 days. Agencies are allowed to use shorter comment periods "when that can be justified."

"This shortened period for public comment is necessary as an element in addressing the largest drug crisis in the nation's history," the DEA said.

The DEA has already made substantial cuts in opioid production quotas, reducing them by 25% in 2017, followed by a 20% cut in 2018. This year’s cuts were ordered despite warnings from drug makers that reduced supplies of opioids “were insufficient to provide for the estimated medical, scientific, research and industrial needs of the United States.”

Under the proposed rules, the DEA would be required to consult with states, Food and Drug Administration, Centers for Disease Control and Prevention, and the Department of Health and Human Services before setting opioid quotas. The rule change was triggered by a lawsuit filed against the DEA by West Virginia, alleging that the current quota system “unlawfully conflates market demand for dangerous narcotics” with the legitimate needs of pain patients.    

Although overdose deaths from heroin, illicit fentanyl and other street drugs now surpass those from pain medication, the DEA claims prescription opioids are gateway drugs to long-term substance abuse.

“(Opioid) users may be initiated into a life of substance abuse and dependency after first obtaining these drugs from their health care providers or without cost from the family medicine cabinet or from friends. Once ensnared, dependency on potent and dangerous street drugs may ensue,” the DEA said.

According to the National Institutes of Health (NIH), only about 5 percent of patients taking opioids as directed for a year end up with an addiction problem. And the DEA itself estimates that less than 1% of legally prescribed opioids are diverted.

How to Prepare for a Scheduled Hospitalization

By Ellen Lenox Smith, Columnist

No one enjoys the experience of being admitted to the hospital. Indeed, hospitalization can provoke extreme anxiety, which does not contribute to successful outcomes in any medical procedure.

Proper preparation before you go to the hospital not only reduces stress, but enhances the probability of a successful medical experience and helps promote a smoother healing process – all of which lead to considerable benefits to the patient.

For example, while recently preparing for a revised neck fusion, I realized that eating would become an immediate issue because nutrition is so important for healing. I don’t want to rely solely on hospital food, so I am preparing meals that I puree and freeze for my husband to bring to the hospital that I can sip through a straw.

Here is a list of other things I plan on doing:

• I plan to arrive with all of my compounded medications in their labeled containers, along with my regular pharmaceutical drugs, so I will not miss any scheduled doses.
• I will bring my entire medical folder, which includes my name, address, insurance coverage, contact information for my primary care doctor, pharmacy and nurse case manager, a list of medications and dosages, a list of medications I am sensitive to, previous surgeries, and my diagnoses.
• I will also include a list of Do’s and Don’ts to help keep the staff educated about Ehlers Danlos Syndrome and keep me safe when I might not be able to advocate for myself.
• I will pack my supplements that I will take after the surgery, so my body is allowed to quickly return to the routine it is used to.
• I will bring a special pillow that I sleep with that keeps my head in the correct position all night long (I use the Therapeutica Sleeping Pillow).
• I will give to the staff my list of food sensitivities and request to meet with the hospital dietician in hopes of getting food delivered that I can metabolize.
• I will pack t-shirts, loose flannel pants and warm socks so I can walk around the halls comfortably, instead of having to wear those lovely gowns you wake up from surgery in!
• I will bring a small bag of toiletries I prefer to use, along with a comb, brush and a toothbrush since what they provide always seems to be so skimpy.
• I will prepare a list of friends and family phone numbers for my husband/caregiver to contact after the surgery is completed.
• I will bring my Living Will and any needed directives.
• I will wear my medical alert bracelet and will ask that they please read what is on it!
• I will bring my own BiPAP breathing machine, so I know I am sleeping with the correct readings. I’ll also have the doctor write down the exact setting in case the hospital decides to use their own machine.
• I’ll bring things to do that are simple and peaceful that will help calm me, as well as items that will help re-stimulate the mind, such as Sudoku puzzles, adult coloring books and quiet music to listen to.
• I will pack enough food for my service dog to cover a few weeks, in case we stay longer than expected. I will also make sure I have her list of shots and credentials proving she is a legal service dog.
• With serious food sensitivities, I always pack snacks.
• I will bring paper and pen to jot down things I want to remember to ask the doctor when he arrives in the room. It is not a time to count on one’s memory!
• I will bring my cellphone and charger to keep connected to the world when back in a room.
• I will bring a list of my passwords in case I need to use the internet.
• I will contact my case manager nurse to alert her of the upcoming surgery, so she is able to help assist with in any snags that might come up and arrange for home healthcare when I’m discharged from the hospital.
• Many of my surgeries are out-of-state, so I make sure my primary care provider clears me for surgery in writing and sends a copy to the hospital. I’ll also bring a hard copy with me, in case they don’t get it or it is misplaced.

Anything a patient can do to simplify the hospitalization is worthwhile! For those of us with complicated and rare medical conditions, we must be prepared to advocate for ourselves. I have found that, for the most part, hospital staff does appreciate enlightened input from patients on best practices and how to keep us safe from harm.

As effective patient advocates, we need to educate others not only for our own safety, but to benefit future patients with our condition.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Opioid Overdoses Rise in Intensive Care

By Pat Anson Editor

Opioid overdose deaths in intensive care units (ICUs) have risen sharply in recent years -- primarily due to heroin --  according to a large new study involving 162 U.S. hospitals in 44 states.

The research findings, published in the Annals of the American Thoracic Society, analyzed data from over four million ICU patients from 2009 to 2015. Of those, 21,705 were patients who overdosed on opioids, most commonly heroin. Deaths from overdoses averaged 7 percent during the study period, but rose to 10 percent by 2015.

“Although our data are not definitive, they suggest that overdoses from heroin, rather than prescription opioids, appear to be a major contributor to the rise in critical care mortality for this population,” wrote lead author, Jennifer Stevens, MD, an associate director of the medical intensive care unit at Beth Israel Deaconess Medical Center and an assistant professor of medicine at Harvard Medical School.

“Not only did the number of opioid-related overdose patients requiring ICU care increase above and beyond the increasing supply of critical care admissions, the mortality among this population increased as well, leading us to estimate that there was a near doubling of ICU deaths.”

Researchers say ICU patients admitted for a heroin overdose were significantly more likely to die than those who overdosed on prescription opioids. Mortality was “not significantly associated” with overdoses linked to prescription painkillers.

The study also found that overdose patients admitted to ICUs required increasingly more sophisticated and costly intensive care, such as high-cost renal replacement therapy or dialysis. The cost of caring for these patients increased from $58,517 to $92,408 during the study period.

"This study tells us that the opioid epidemic has made people sicker and killed more people, in spite of all the care we can provide in the ICU, including mechanical ventilation, acute dialysis, life support and round-the-clock care," said Stevens.

Among the opioid overdose patients, 25 percent experienced aspiration pneumonia, 15 percent rhabdomyolosis (release of dead muscle fiber into the bloodstream), 8 percent anoxic brain injury and 6 percent experienced septic shock. Ten percent of the patients who overdosed needed mechanical ventilation. ICU’s in Massachusetts, Indiana and Pennsylvania had substantially higher overdose death rates.

A new study this week found the number of Americans who died from opioid overdoses – particularly from heroin – is significantly higher than previously reported. Researchers at the University of Virginia refined the overdose data from 2014 death certificates and estimated that overdose death rates nationally were 22 percent higher for heroin. Deaths involving heroin were substantially underreported in Pennsylvania, Indiana, New Jersey, Louisiana, and Alabama.

"The pace of the opioid epidemic continues to increase," said Stevens. "Those of us who work in hospital intensive care units need to make sure we have the tools we need to help patients with opioid use disorders when they are at their sickest, because there doesn't appear to be any end to this epidemic in sight."

Virtual Reality Relieves Pain in Hospitalized Patients

By Pat Anson, Editor

Virtual reality therapy significantly reduced both acute and chronic pain in hospitalized patients, according to a new study that adds to a growing body of evidence that virtual reality (VR) can give temporary relief to pain patients. The study is published online in the journal JMIR Mental Health.

Researchers at Cedars-Sinai Medical Center in Los Angeles enrolled 100 patients in the study who had an average pain score of 5.4 on a pain scale of zero to 10.

They suffered from a wide variety of conditions, including gastrointestinal, cardiac, neurological and post-surgical pain.

Fifty patients watched a 15-minute nature video on a computer screen that included mountain scenes and running streams, accompanied by calming music.

The other 50 patients wore virtual reality goggles to watch a 15-minute animated game called Pain RelieVR, which was specifically designed to treat patients who are bed bound or have limited mobility.

The game takes place in a fantasy world where users shoot imaginary balls at a wide range of moving objects by maneuvering their heads toward the targets. The game also uses motivational music, positively reinforcing sounds and direct messages to patients.

The patients who watched the nature video had a 13 percent drop in their pain scores, while patients who watched the virtual reality game had a 24 percent decline in their pain levels. The VR group had no change in their blood pressure or heart rate.

“We found that use of a 15-minute VR intervention in a diverse group of hospitalized patients resulted in statistically significant and clinically relevant improvements in pain versus a control distraction video without triggering adverse events or altering vital signs,” wrote lead author Brennan Spiegel, MD, director of Cedars-Sinai’s Health Service Research.

“These results indicate that VR may be an effective adjunctive therapy to complement traditional pain management protocols in hospitalized patients.”

scenes from virtual reality game

Researchers say it’s unknown exactly how VR works to reduce pain levels, but one explanation is simple distraction.

“When the mind is deeply engaged in an immersive experience, it becomes difficult, if not impossible, to perceive stimuli outside of the field of attention. By ‘hijacking’ the auditory, visual, and proprioception senses, VR is thought to create an immersive distraction that restricts the mind from processing pain,” said Spiegel.

Because the VR therapy was only 15 minutes long, Spiegel says lengthening the period of pain reduction might require sustained and repeated exposure to a variety of virtual reality content.

Another small study of VR therapy, published in PLOS, found that just five minutes of exposure to a virtual reality application reduced chronic pain by an average of 33 percent.

VR therapy is not for everyone. It may induce dizziness, vomiting, nausea or epileptic seizures, so patients have to be screened and monitored for side effects. Another barrier is age related. Two-thirds of the people who were eligible for the Cedars-Sinai study were unwilling to try VR therapy, particularly older individuals.  

A larger study is underway at the hospital to measure the impact of VR therapy on the use of pain medications, length of hospital stay and post-discharge satisfaction scores.

The Pain RelieVR game was created by AppliedVR , a Los Angeles based company that is developing a variety of virtual reality content to help treat pain, depression and anxiety. Below is a promotional video released by the company.

Post-Operative Chronic Pain Costly for Hospitals

By Pat Anson, Editor

A new study by Canadian researchers has documented the long-term cost that chronic pain can have when patients are sent home from a hospital with post-surgical pain that doesn't go away.

Researchers at Toronto General Hospital (TGH) and University Health Network (UHN) estimate that about 15 percent of complex post-operative patients develop moderate to severe chronic pain, and have significant disability that requires the use of opioids for long-term pain relief.

The estimated additional cost of treating those patients at TGF ranges from $2.5 million to $4.1 million year, due to repeat doctor visits, extended hospital stays, and re-admissions.

On average, chronic pain patients stay five to seven days longer in the hospital for the same condition as patients who do not have chronic pain.

"We need to break the cycle of pain before it becomes chronic. It is much harder to treat someone when the pain is entrenched, and the window of opportunity is lost," says senior author Hance Clarke, MD, who is Director of the Transitional Pain Service in the Anesthesia Department and Pain Management at TGH and a clinical researcher at the Toronto General Research Institute.

Clarke says it takes about six months for post-surgical pain to develop into chronic pain, and it’s important to intervene before that happens. About 13 percent of TGH surgical patients already have chronic pain when the enter the hospital, which can worsen after surgery.

The cost of treating chronic pain in Canada is estimated at between $47 billion and $60 billion a year -- more than HIV, cancer and heart disease combined. It costs about $5,000 a year to care for a chronic pain patient in Ontario.

"Pain is an epidemic, and the costs to the healthcare system, as well as to patients, are staggering," said Clarke.

Up to 70 percent of patients after major surgery are discharged from the hospital with a prescription for opioids. Three months later, over one in four (27%) are still using them.

"Identifying at-risk patients, typically those who have pre-existing pain, mental health issues, chronic use of opioids before surgery, is critical, so that we can develop follow-up plans, and educate patients and other healthcare providers,'' saysClarke. "We need to give patients the tools to manage their pain, should it become problematic."

The study findings are published in the journal Pain Management.

Ironically, the Canadian study highlighting the need for early pain intervention in hospitals comes at a time when politicians and some leading health officials in the U.S. are calling for an end to hospital surveys that ask patients about the quality of their pain care.

The American Medical Association recently said the patient surveys, which are required by Medicare, “are clearly motivating forces for opioid prescribing.”

Medicare says there is no evidence to support that claim, but has proposed dropping all pain questions from the survey.

Joint Commission Defends Hospital Pain Standards

(Editor’s Note: As Pain News Network has been reporting, an intense lobbying effort is underway to stop requiring U.S. hospitals to ask patients about the quality of their pain care. Critics contend the practice creates a financial incentive for hospitals to treat pain and leads to “aggressive opioid use.”  The Joint Commission, which accredits hospitals and sets pain management standards, released this statement about the controversy, which we thought you should see in its entirety.)

By David Baker, MD

In the environment of today’s prescription opioid epidemic, everyone is looking for someone to blame. Often, The Joint Commission’s pain standards take that blame.  We are encouraging our critics to look at our exact standards, along with the historical context of our standards, to fully understand what our accredited organizations are required to do with regard to pain.

The Joint Commission’s standards require that patients be assessed for pain, and if they are experiencing pain, then it should be managed. The standards DO NOT require the use of drugs to manage a patient’s pain; and when a drug is appropriate, the standards do not specify which drug should be prescribed.

Our foundational standards are quite simple. They are: 

DAVID BAKER, MD

• The hospital educates all licensed independent practitioners on assessing and managing pain.
• The hospital respects the patient's right to pain management.
• The hospital assesses and manages the patient's pain. (Requirements for this standard follow)
  1. The hospital conducts a comprehensive pain assessment that is consistent with its scope of care, treatment, and services and the patient's condition.
  2. The hospital uses methods to assess pain that are consistent with the patient's age, condition, and ability to understand.
  3. The hospital reassesses and responds to the patient's pain, based on its reassessment criteria.
  4. The hospital either treats the patient's pain or refers the patient for treatment. Note: Treatment strategies for pain may include pharmacologic and nonpharmacologic approaches. Strategies should reflect a patient-centered approach and consider the patient's current presentation, the health care providers' clinical judgment, and the risks and benefits associated with the strategies, including potential risk of dependency, addiction, and abuse.

Despite the stability and simplicity of our standards, misconceptions persist, and I would like to take this opportunity to address the most common ones:

Misconception #1: The Joint Commission endorses pain as a vital sign

The Joint Commission does not endorse pain as a vital sign, and this is not part of our standards. Starting in 1990, pain experts started calling for pain to be “made visible.” Some organizations implemented programs to try to achieve this by making pain a vital sign. The original 2001 Joint Commission standards did not state that pain needed to be treated like a vital sign. The only time that The Joint Commission referenced the fifth vital sign was when The Joint Commission provided examples of what some organizations were doing to assess patient pain. In 2002, The Joint Commission addressed the problems in the use of the 5th vital sign concept by describing the unintended consequences of this approach to pain management and described how organizations had subsequently modified their processes. 

Misconception #2: The Joint Commission requires pain assessment for all patients

This requirement was eliminated in 2009.

Misconception #3: The Joint Commission requires that pain be treated until the pain score reaches zero.

There are several variations of this misconception, including that The Joint Commission requires that patients are treated by an algorithm according to their pain score. In fact, throughout our history we have advocated for an individualized patient-centric approach that does not require zero pain. The introduction to the “Care of Patients Functional Chapter” in 2001 started by saying that the goal of care is “to provide individualized care in settings responsive to specific patient needs.”

Misconception #4: The Joint Commission standards push doctors to prescribe opioids

As stated above, the current standards do not push clinicians to prescribe opioids. We do not mention opioids at all:
The note to the standard says: Treatment strategies for pain may include pharmacologic and nonpharmacologic approaches. Strategies should reflect a patient-centered approach and consider the patient's current presentation, the health care providers' clinical judgment, and the risks and benefits associated with the strategies, including potential risk of dependency, addiction, and abuse.

Misconception #5: The Joint Commission pain standards caused a sharp rise in opioid prescriptions.

This claim is completely contradicted by data from the National Institute on Drug Abuse (Figure 1).

The number of opioid prescriptions filled at commercial pharmacies in the United States from 1991 to 2013 shows the rate had been steadily increasing for ten years prior to the standards’ release in 2001. It is likely that the increase in opioid prescriptions began in response to the growing concerns in the U.S. about under treatment of pain and efforts by pain management experts to allay physicians’ concerns about using opioids for non-malignant pain. Moreover, the standards do not appear to have accelerated the trend in opioid prescribing. If there was an uptick in the rate of increase in opioid use, it appears to have occurred around 1997-1998, two years prior to release of the standards.

The Joint Commission pain standards were designed to address a serious, intractable problem in patient care that affected millions of people, including inadequate pain control for both acute and chronic conditions. The standards were designed to be part of the solution. We believe that our standards, when read thoroughly and correctly interpreted, continue to encourage organizations to establish education programs, training, policies, and procedures that improve the assessment and treatment of pain without promoting the unnecessary or inappropriate use of opioids. 

The Joint Commission is committed to working to dispel these misunderstandings and welcomes dialogue with the dedicated individuals who are caring for patients in our accredited organizations.

David Baker, MD, is Executive Vice President of Healthcare Quality Evaluation at The Joint Commission

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

PROP Leads New Effort to Silence Pain Patients

By Pat Anson, Editor

Physicians for Responsible Opioid Prescribing (PROP) has joined in the lobbying effort to stop asking hospital patients about the quality of their pain care.

In a petition to the Centers for Medicare and Medicaid Services (CMS), PROP founder and Executive Director Andrew Kolodny calls on the agency to stop requiring hospitals to survey patients about their pain care because it encourages “aggressive opioid use.” PROP is funded and operated by Phoenix House, which runs a chain of addiction treatment centers, and Kolodny is its chief medical officer.

“Medication is not the only way to manage pain and should not be over-emphasized. Setting unrealistic expectations for pain relief can lead to dissatisfaction with care even when best efforts have been made to resolve pain. Aggressive management of pain should not be equated with quality healthcare,” Kolodny wrote in the petition on PROP stationary, which is co-signed by dozens of addiction treatment specialists, healthcare officials, consumer advocates and PROP board members.

The same group signed a letter, also on PROP stationary, to The Joint Commission (TJC) that accredits hospitals and healthcare organizations, asking it to change its pain management standards.

“The Pain Management Standards foster dangerous pain control practices, the endpoint of which is often the inappropriate provision of opioids with disastrous adverse consequences for individuals, families and communities. To help stem the opioid addiction epidemic, we request that TJC reexamine these Standards immediately,” the letter states.

Medicare has a funding formula that requires hospitals to prove they provide good care through a patient satisfaction survey known as the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS).  The formula rewards hospitals that are rated highly by patients, while penalizing those that are not. 

The petition asks that these three questions be removed from the survey:

During this hospital stay, did you need medicine for pain?

During this hospital stay, how often was your pain well controlled?

During this hospital stay, how often did the hospital staff do everything they could to help you with your pain?

As Pain News Network has reported, 26 U.S. senators and the Americans College of Emergency Physicians have sent similar letters to Medicare asking that the pain questions by dropped from the survey. A recently introduced bill in the U.S. Senate called the PROP Act of 2016 would also amend the Social Security Act to remove "any assessments" of pain in hospitalized patients.

The PROP-led petition cites a 2013 study that found opioid pain medication was prescribed to over half of the non-surgical patients admitted to nearly 300 U.S. hospitals.

“Pain management is obviously an important part of patient care and we’ve always acknowledged that. But the problem here is that one should not have financial incentives and that’s essentially what happens through the CMS survey,” said Dr. Michael Carome of the consumer advocacy group Public Citizen, who co-signed the petition.

“The way the CMS survey and Joint Commission standards have driven the focus on pain has overemphasized its importance. We’re not saying don’t assess it at all, we’re saying the survey and standards have done more harm than good,” Carome told Pain News Network.

A top Medicare official recently wrote an article in JAMA defending the CMS survey.

"It has been alleged that, in pursuit of better patient responses and higher reimbursement, HCAHPS compels clinicians to prescribe prescription opioids. However, there is no empirical evidence that failing to prescribe opioids lowers a hospital’s HCAHPS scores," wrote Lemeneh Tefera, MD, Centers for Medicare & Medicaid Services. “Nothing in the survey suggests that opioids are a preferred way to control pain.”

Before joining Phoenix House in 2013, Kolodny was Chairman of Psychiatry at Maimonides Medical Center in New York City, a hospital that was given a one-star rating by patients in the CMS survey.   Only 61 percent of the patients said their pain was "always" well controlled at Maimonides and 11 percent said their pain was "sometimes" or "never" controlled. Only 59% of the patients said they would recommend Maimonides, compared to a national average for hospitals of 71 percent.

PROP has long been active in lobbying federal agencies to rein in the prescribing of opioids. It recently had some major successes in achieving its goals.

Five PROP board members helped draft the opioid prescribing guidelines released by the Centers for Disease Control and Prevention, which discourage primary care physicians from prescribing opioids for chronic pain. 

The Obama administration also recently asked Congress for over a billion dollars in additional funding to fight opioid abuse, with most of the money earmarked for addiction treatment programs such as those offered by Phoenix House, which operates a chain of addiction treatment clinics. A proposed rule would also double the number of patients that physicians can treat with buprenorphine, an addiction treatment drug. 

According to OpenSecrets, Phoenix House spent over a million dollars on lobbying from 2006-2012.  PROP calls itself “a program of the Phoenix House Foundation” on its website.     

PNN and the International Pain Foundation recently conducted a survey of over 1,250 pain patients and found that over half rated the quality of their pain treatment in hospitals as poor or very poor. Over 80 percent said hospital staffs are not adequately trained in pain management. Nine out of ten patients also said they should be asked about their pain care in hospital satisfaction surveys.

Pain Patients Say Non-Opioid Meds ‘Do Not Help at All’

By Pat Anson, Editor

In recent weeks, several efforts have been launched to scale back the use of opioid pain medication in hospitals and emergency rooms.

The American Pain Society (APS) released new guidelines for post-surgical pain that encourage physicians to limit the use of opioids, and to give acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDs), gabapentin (Neurontin), or pregabalin (Lyrica) to patients suffering from postoperative pain. Cognitive behavioral therapy and transcutaneous elective nerve stimulation (TENS) were also recommended by the APS for post-operative pain.

Similar measures were endorsed by an expert panel at the Jefferson College of Population Health in Philadelphia, which warned that relieving a patient’s post-surgical pain with opioids could lead to addiction.

“Clearly, giving patients what they want, or think they need, is not always in their best interest,” wrote lead author Janice Clark, RN, Jefferson College of Population Health.

But most pain patients aren’t getting what they want or what they need in hospitals -- pain relief --  according to an extensive survey of over 1,250 acute and chronic pain patients by Pain News Network and the International Pain Foundation (IPain).

Over half rated the quality of their pain care in hospitals as poor or very poor, and six out of ten patients said their post-surgical pain was not adequately controlled.

And many hospitals are already very reluctant to give patients opioids. Over half (53%) the patients in our survey say they were refused opioid pain medication while hospitalized.   

“If you end up in the emergency room you will NEVER be given opioid based pain meds. They use NSAIDs. That usually isn't good enough,” said a patient who suffers from rheumatoid arthritis and spinal stenosis.

“This obsession with preventing pain sufferers from receiving adequate care is cruel and unusual. Would you deny a diabetic access to medication to control their condition?”

WERE YOU EVER REFUSED OPIOID PAIN MEDICATION WHILE HOSPITALIZED?

“They didn't want to hand out an opiate but were sure happy to go get me some Xanax,” said a patient who was hospitalized for an undiagnosed heart problem, as well as back and rib pain. “Welcome to the American standard of schooling and healthcare.”

“I went to the ER for a broken arm, and they took x-rays and told me it was broken. I asked for pain meds, even asked for non-narcotic meds, and got NOTHING, not even an aspirin with a broken arm, nothing while they put a cast on it and nothing to fill when I left,” said another patient.

“The pharma companies are using everything they can to increase the drug costs and these newer drugs are less effective and much more expensive. Soon they'll be suggesting we not use anesthesia for amputations,” said another pain sufferer.

Patients overwhelmingly agreed in our survey that non-opioid medications and therapies were ineffective in relieving pain. Nearly two-thirds (65%) said they “did not help at all” and nearly one in four said they only “helped a little.”

Just 11% said non-opioid treatments were very effective or somewhat effective at relieving pain.

“If they intend to use ‘preferred treatments’ like NSAIDs and Lyrica/Neurontin, they should have a reason for using these more dangerous, less effective meds,” wrote one patient.

“They should know that Lyrica and Neurontin can take months to build in the patient's system in order to be effective, and that NSAIDs can cause heart problems, gastric bleeding, and other side effects which can cause a host of new problems for the patient.”

“Tylenol won't help me and I'm allergic to NSAIDs. Why not do something about the real druggies that ruined it for the real patients? They get their medicines! I won't go to the ER unless I'm dying!” wrote another patient.

WAS NON-OPIOID PAIN MEDICATION OR THERAPY EFFECTIVE IN RELIEVING YOUR PAIN?

“Advil or Tylenol just don't cut it. It's ridiculous that you would not be treated for chronic pain in and out of hospital setting,” said another pain sufferer.

“I'm not surprised there's a perception that pain care is poor, in hospital or out,” said David Juurlink, MD, an internist and clinical pharmacologist at Sunnybrook Health Sciences Centre in Toronto.

“It's important that patients understand that one major reason for this is that our available pain medications (principally acetaminophen, NSAIDs and opioids, but various other drugs as well), simply don't work well for many types of pain. I see this firsthand every day, and it highlights the need for research into novel drug therapies that treat pain safely and effectively,” said Juurlink, who is also a board member of Physicians for Responsible Opioid Prescribing (PROP) and was a consultant to the CDC during development of its opioid prescribing guidelines.

“It's especially important that people not conflate ‘poor pain care’ with ‘reluctance to use opioids,’ because opioids really are no better than our other options for treating pain -- chronic pain in particular -- and they can make pain worse in a very short period of time. This phenomenon (opioid-induced hyperalgesia) is something we're just starting to understand, but it's one of many reasons why patients can have pain that persists or even worsens despite therapy. It's one more reason why doctors and patients need to de-emphasize the role of opioids in managing pain.”

One patient in our survey wishes hospitals would allow medical marijuana to be used an alternative to opioids.

“It would be better and safer if cannabis was allowed in treating pain in hospitals,” they said. ”I don't use opioids every day because I use cannabis instead. When I am in hospital I am forced back on opioids and go through withdrawal when I leave the hospital. This would not be the case if I could keep using cannabis instead.”

Still another patient discovered a novel way to get opioids in the hospital: don’t ask for them.

“I ended up learning to ask for non-opioid painkillers. That way when the painkillers they gave me didn't work, they would actually suggest them,” he said.

To see the complete survey results, click here.

Pain Patients Tired of Being Labeled as Addicts

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.

DID YOU EVER FEEL YOU WERE LABELED AS AN ADDICT OR "DRUG SEEKER" BY HOSPITAL STAFF?

“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.

WERE DOCTORS RELUCTANT TO GIVE YOU OPIOID PAIN MEDICATION WHILE YOU WERE HOSPITALIZED?

“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?

SHOULD PATIENTS BE ASKED ABOUT THEIR PAIN CARE IN HOSPITAL SATISFACTION SURVEYS?

“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.

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.

HOW WOULD YOU RATE THE OVERALL QUALITY OF YOUR MEDICAL CARE IN HOSPITALS?

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.

HOW WOULD YOU RATE THE QUALITY OF YOUR PAIN TREATMENT IN HOSPITALS?

“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.

IF YOU EXPERIENCED PAIN AFTER A SURGERY OR TREATMENT IN A HOSPITAL, WAS IT ADEQUATELY CONTROLLED?

“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.

OVERALL, DO YOU FEEL HOSPITAL STAFF ARE ADEQUATELY TRAINED IN PAIN MANAGEMENT?

"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.

Hospital Study Calls Chest Pain ‘Opportunity for Savings’

By Pat Anson, Editor

Reducing the cost of healthcare is a major goal for insurers, providers and patients, but some physicians say the state of Rhode Island is taking things too far by discouraging some patients from getting their pain treated.

The state’s Executive Office of Health and Human Services has issued a report that identifies $90 million in annual savings “by preventing non-emergency visits” to hospital emergency rooms. Chest pain is listed as “the greatest opportunity for savings” while back pain, abdominal pain and headache are considered “potentially preventable" reasons for emergency room care.

“While many people associate ‘chest pain’ with ‘heart attack’, a truly emergent and serious condition, the majority of those who present to the emergency room with chest pain and are not admitted to the hospital are not experiencing a heart attack,” the report says.

In Rhode Island, 46% of emergency room visits were considered potentially preventable for privately insured patients and 70% of the visits for Medicaid patients.

“A potentially preventable emergency room visit is when a patient goes to an emergency room for a health condition that could have been treated in a non-emergency setting or prevented by keeping them healthier earlier on. Treatment in an emergency room is generally more expensive than a primary care visit,” according to the report.

The average cost of an emergency room visit in Rhode Island varies considerably, from $368 for a Medicaid recipient to $1,154 for someone with private insurance.  

The American College of Emergency Physicians (ACEP) calls the report irresponsible and flawed, because it relies on data about patients’ final diagnoses, not their presenting symptoms. That analysis does not take into consideration the national "prudent layperson" standard in the Affordable Care Act (ACA), which says emergency visits must be covered by insurance companies based on the patients' symptoms, not their final diagnoses.

"It is very alarming that a report like this is being issued that directly undermines language in the ACA and patients' responsible use of the emergency department," said Jay Kaplan, MD, president of ACEP. "Patients never should be forced into the position of self-diagnosing their medical conditions out of fear of insurance not covering the visit. This applies 20/20 hindsight to possibly life-threatening conditions — such as chest pain — and it violates the national prudent layperson standard designed to protect patients' health plan coverage of emergency care."

Data in the Rhode Island report also does not correlate with the latest national data on emergency visits from the CDC, which found that 96 percent of emergency patients needed medical care within two hours.

"A report like this only serves to potentially scare patients away from the emergency department when they may need it most," said Christopher Zabbo, DO, president of ACEP's Rhode Island Chapter. "Both harmless and deadly conditions often have the same presentations. Asking patients to make that determination while at home, anxious, and with inadequate information, is a recipe for disaster."   

“I do all I can to stay away from our hospitals unless it is a planned surgery. I arrive with all my records, educated on my condition and find they (doctors) are immediately turned off due to my complications,” said Ellen Lenox Smith, a Rhode Island resident who suffers from Ehlers Danlos syndrome and is a columnist for Pain News Network. Ellen recently wrote about some of her bad hospital experiences and how she learned to avoid future ones. (see”How to Stop Hospital Horrors”).  

According to the CDC, stomach and abdominal pain were the number one reason for patients to visit an emergency room in 2011, followed by chest pain, fever, headache, cough and back pain.