A Pained Life: Tyranny of the White Coat

By Carol Levy, PNN Columnist

I saw a new neurologist this past week. He was a lovely man. Unfortunately, I was referred to him in error. He does not treat trigeminal neuralgia, so this was the first and last time I would see him.

That saddened me. Not only because I really took a liking to him, but because he did some things I have seen far too rarely.

He started our appointment by saying, “I have read your history.” Not only that, he had tried to contact my neurosurgeon to find out why I had been referred to him, since he did not treat facial pain. He had gone to the trouble to prepare for the meeting despite knowing he was not the right specialist for me.

Like many doctors, he dictated his notes into a recording device while we were together. From what he said, it was obvious he had read my history and recalled much of it. I was amazed when he would stop and correct himself.

Even more surprising was when he got something wrong and I shook my finger to signal “No.” Immediately he stopped and asked, “What did I get wrong?”

I’d explain the pain was on the left side of my face, not the right, and in the upper part, not lower. He listened and corrected his notes.

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Usually most of the docs who do this dictation, ostensibly to make sure they get the information right and have me there to confirm, do not care if what they say is wrong. In fact, my main experience has been docs who say patently wrong information.

For them, I would hold up my finger, shake my head and mouth the words, “That’s wrong.” Invariably, the doctors would shake their heads and silence me with a “Shhhh.” No effort is made to correct or even ask what is wrong with their notes. As a result, the wrong information stays on the record and subsequent docs then approach us with preconceived ideas about things that are not true.

The last pain management doctor I saw decided I had had a history of major depression. He did not ask if I had a psychiatric history or diagnosis but decided this on his own. He did not dictate his notes while I was with him, but I saw it when I went onto the online portal where after-visit summaries are posted.

I thought he must have gotten confused. When he asked me about my family history, I had mentioned a relative who had a diagnosis of depression.

At the next appointment, I asked him to change the record. ““That is not my history,” I said. “You must have been thinking about my relative.” He seemed to agree -- and yet that “history” remains on my official record.

Is it an arrogance that too many docs develop? Is it a hardness, where the patient is almost irrelevant to the entire process? Is it because the patient is not a “professional,” so they can't be trusted even when it is their own history they are giving?

I don't know. I do know that it’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting you.

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Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

A Pained Life: Being Your Own Advocate

By Carol Levy, PNN Columnist

I was reading an article about a woman with cancer.  She tells how harrowing a journey it has been and all she has been through.

To help herself and her doctors, she carries to each appointment a thick medical file with all her information: doctors notes, tests results, surgeries, treatments, procedures, medications and the outcomes of them all.

“Doctors see this and they respect me,” she says. “I've learned that you have to be super organized. You have to be your own advocate.”

Good for her.

When I see a new doctor, I hand the nurse or doctor a two page printout that details my medical history. It includes all of the illnesses and procedures I have had that warrant noting (using their correct medical names), outcomes for the surgeries related to my trigeminal neuralgia, and all the medications I have tried.

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I am at a new doctors' office. The nurse comes out to greet me and I hand her my printout. She takes a quick look. “Who wrote this for you?” she asks.

“I did.” Who else would have written it?

She gives me a look that says, “Yeah sure.”

I recently saw a new pain specialist. He is a psychiatrist by training, but mainly sees patients to treat their pain, not as a therapist.

During our conversation I remark, “I think the pain is oculomotor,” referring to the third cranial nerve. I never think twice about using correct medical and anatomical terms when talking with a medical person. It gives us a common language.

And yet many doctors don't seem to like it. They ask, almost confrontationally: “Why do you talk like that?”

The psychiatrist’s training (I assume) made him more circumspect. “What is your background?” he asked. “You are very familiar with medical terminology and use it easily.”

He was the first doctor to ever ask it in that manner, the only one to ask anything about my background.

Had they asked, as he did, they would have learned I worked in hospitals for years as a candy striper and ER ward clerk. In those days I had pretensions towards medical school. The hospital where I worked was a teaching hospital and many of the residents loved to teach me, even allowing me to observe surgery. It would have been hard not to pick up the lingo.

So what is the difference? Why do doctors and nurses warmly welcome the information the cancer patient tenders via her thick file, while I am looked at askance?

And it is not just me. Time and again I hear from other pain patients or read in online support groups that a doctor or nurse wanted to know why a patient knew so much about their disorder and why they can speak intelligently about it.

I know why.  I think most of us do.  Because we are not children. We want to be seen and heard, to be partners in our medical care. We need to help the medical community understand: Ignorance is not bliss. And knowledge doesn't make us suspect.

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Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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

Should You Record Your Medical Appointments?

By Barby Ingle, Columnist

My memory troubles started soon after developing Reflex Sympathetic Dystrophy in 2002. “Brain fog” or “pain brain” is a common symptom of RSD, fibromyalgia and other chronic pain conditions. Our brains have trouble focusing on short term memories and storing them for easy recall.

Even now, in a semi-state of remission, I have trouble saying the right words at the right time or remembering if I have seen a movie before. To help my memory and keep appointments, I started keeping a “to do” list and using a color-coded calendar and a medication dispensing system. I also made a habit of recording phone calls and conversations with my healthcare providers.

I’m not alone. According to a recent JAMA article, about 15% of patients in the UK secretly record their medical visits, often using their smartphones. I have been recording since 2003, after I realized that my memory was weak and that I needed assistance to better comply with my care between appointments.

How many times have you hung up the phone and your spouse asked, “Who was that? What did they need?” Or they came home from work and asked, “What did the doctor say?” or “What did you do today?”

And you can’t answer.

Before you think, “Oh, Barby must have been high on her pain medication,” that for me is a big fat NOPE. It happened to me when I was not on any medications. It is a symptom of my medical condition, not a symptom of the medications I take. For some patients on other medications that may be a problem, but it only adds to the already challenged mind of someone with chronic pain or traumatic brain injuries. The worse the pain gets, the worse their memory gets.

While you're talking, you think, “Oh, this is important, I will remember this.” Yet, you don’t. You can’t recall what you had for breakfast or when you last took your medication, let alone the intricacies of a doctor appointment.

Studies show that recording medical appointments reduces malpractice claims and leads to better understanding from patients on what their care is and why. This leads to better patient compliance and engagement in their own health outcomes.

The University of Texas Medical Branch is promoting patient recording of their visits. They tell patients it is an open policy that is there to protect them and their providers. Check out the video they created: 

Is It Legal?

I live in a state where recording a conversation only has to be known by one party. But if you are in New York or California, you have to inform and get permission from all those who may be recorded in advance.

Sometimes I record in secrecy, but most times I have my husband or sister record the appointment -- and it is quite clear what they are doing. In 15 years of doing this, I have only had one doctor ever ask me to erase the recording. That was because he had other providers in the room examining me and he talked about proprietary information that didn’t have to do with my medical condition.

I know that when I am under stress or have high pain levels, I need to record or have someone take notes at the appointment or both. It’s hard to remember if you’re supposed to take a new medication twice a day before meals, on an empty stomach, or once in the morning and once at night. Appointment times are also getting shorter and more filled with new medical terms and information that is important for us to remember.

In general, a healthy person only remembers about 25% of a conversation as soon as it is over. If you have a stressful chronic condition, even remembering that much is almost impossible. So why not record for your own safety? With most smartphones, all you have to do is press record at the start of the appointment and then hit stop at the end.

You’ll be better engaged, have an accurate account of the appointment, and be able to refer back to it when you get home and someone asks, "What did the doctor say?"

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her 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.

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.

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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.

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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.

Indiana Doctor Killed in Dispute Over Pain Meds

By Pat Anson, Editor

A gunman who fatally shot an Indiana doctor this week was upset because the physician refused to prescribe opioid pain medication to his wife, according to police.

Dr. Todd Graham was confronted Wednesday afternoon in the parking lot outside a South Bend medical center by 48-year Michael Jarvis. After a brief argument, Jarvis shot Graham twice in the head. Jarvis then drove to a friend’s house and killed himself, according to the South Bend Tribune.

An investigation later determined that Jarvis’ wife had an appointment with Graham Wednesday morning and the doctor declined to prescribe an opioid medication for her chronic pain.

“It was Dr. Graham’s opinion that chronic pain did not require prescription drugs,” St. Joseph County Prosecutor Ken Cotter said at a news conference Thursday. "He did what we ask our doctors to do. Don't over-prescribe opioids.”

DR. TODD GRAHAM

DR. TODD GRAHAM

Michael Jarvis was present during his wife's appointment and argued with Graham. Jarvis eventually left, but returned in the afternoon with a gun and confronted the doctor outside the medical center.

"Make no mistake, this was a person who made a choice to kill Dr. Graham. This is not a fallout from any opioid epidemic or any opioid problems. That probably leads us into an examination of what is happening with the opioid problem in our community, and frankly, in our whole nation," said Cotter.

Cotter said Jarvis had a “confrontation” with Graham before Wednesday, but did not go into details.

"This was a very targeted attack," said Commander Tim Corbett of Saint Joseph County Metro Homicide. "I am a firm believer -- and I think Ken feels the same way -- that if Jarvis would have got inside that building, although there wouldn't have been any specific target, it's like trapping an animal in a corner: they're going to come out fighting. I truly believe this could have escalated into a mass shooting. I do believe that."

Mrs. Jarvis was apparently unaware of her husband’s plans.

"It was clear that she didn't know what he was doing. She's suffering as well," Cotter said.

The 56-year old Graham was married and had three children. His obituary can be seen here. Graham's wife learned of her husband’s death through social media, according to the South Bend Tribune.

Several of Graham’s patients left messages about him on the Tribune’s website.

“He was a very caring person. I am lost of words my heart is breaking for his wife and family,” wrote one patient.

“Dr. Graham has been my Dr. for 3 years. After 3 accidents, and surgeries he has helped me tremendously. My condolences to his wife. He will be missed,” wrote another.

The Indiana shooting was the third in recent months involving a pain patient and a doctor.

In June, a gunman shot and wounded two people at a Las Vegas pain clinic before taking his own life.  The shooter, who suffered from chronic back pain, had been denied pain medication during an unscheduled appointment.

In April, a disgruntled pain patient in Great Falls, Montana burned down a doctor's home, held the doctor's wife at gunpoint and killed himself during a standoff with police.

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.