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The "non-compliant" patient

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It used to strike me as odd that physicians used somewhat hostile language to describe patient behavior – “the patient is non-compliant,” “the patient refused [this-or-that drug or procedure],” “the patient denies [insert symptom here].”

After many years of using these words, I forgot just how inflammatory they are. They became part of my language, and I used them every day to describe people. I’m not really sure how this phraseology became common parlance, but it is a tad adversarial when you think of it. It sets up a kind of us versus them environment. And really, medicine is all about us in partnership with them.

I was reminded of this fact as a friend of mine described a recent “non-compliance” episode. She had been complaining of shortness of breath, and had some sort of suspicious finding on her chest CT. The pulmonary specialist (called a ‘respirologist’ in Canada) recommended a bronchoscopy. Here’s what she says,

I wish I had the chance to explain to my respirologist why I was non-compliant about the bronchoscopy. I got the impression that she thought I was being “difficult” for no good reason, and that I was wasting her time. But the truth is, all my life I’ve had this vague sense that anything big going down my throat was particularly scary to me. I knew I had trouble gagging down pills, but it never occurred to me to mention that. I also chew my food to death in order to swallow it comfortably, but I never thought about that very consciously, either. It wasn’t until months later when I had to undergo surgery for my gallbladder that my anesthesiologist (who had to intubate me) discovered that I had an internal throat deformity.

So my point is that it might be valuable for the respirologist to know that when a patient is very scared of something (especially when she is usually never scared of tests, needles, etc), it could be an important clue. I know now that bronchoscopies are not without risk. A bronchoscopy technician might not have handled the situation nearly as well as that highly-trained, very experienced anaesthesiologist did.

What I learned is this: patients don’t know how to explain things that they haven’t thought much about before, especially when they know that their doc is understandably pressured to get through her scheduled appointments on time. All they know is that they’re scared and that they want to run away. They’re not primarily out to exasperate their docs with their noncompliant attitude. Still, it isn’t easy being a doc. I’m sure noncompliant patients are indeed very irritating. But it isn’t easy being a patient, either. Being looked down upon is irritating too. Not only that, but the patient has a lot more to lose if a mistake is made. But what can you do? Everybody is under a lot of pressure when it comes to medical issues. We all just have to try to be understanding and do our best to work together for a good outcome. It’s in the best interest of both parties, so it shouldn’t have to be a battle!

Have you been a “non-compliant” patient for a good reason? Do share.

This post originally appeared on Dr. Val’s blog at

Your mom will always be your mom, part 2


I’m afraid you’re going to need a box of tissues for this next post. My good friend Carolyn (she is the Cancer Center Manager at Revolution Health – and has a great blog) sent me a link to a story she wrote about a school program developed to raise awareness of the dangers of drunk driving. It’s called: “Fatal Choices – Shattered Dreams.”

Basically, the entire school goes through a detailed reenactment of a fatal car crash where several classmates are killed. Part of the program requires that all the kids (and their parents) imagine the goodbye letters they’d write if they knew they would be killed in a drunk driving crash. Carolyn and her daughter wrote these letters to one another, as they imagined this horrific scenario:

Dear Mom & Dad. I really don’t know what you are supposed to say in a good bye letter. I couldn’t even imagine waking up one morning and not coming back to see you later that same day. Today, that unimaginable thing became a reality. Dad – if I could go back to this morning knowing what the day would bring I wish more than anything that I just would have said I love you instead of griping about stupid things. I truly do love you and hope and wish that after my death, you can move on, heal and live an amazing life full of happiness. Mom – my only regret with you is that I did not even get to see or speak to you this morning. I would give a lot just to be able to see you this morning. You are the one person that I would not mind being completely like when I grow up, if I would have grown up. You are more than just my mom, you are the one I can talk to and count on. I love you so much! Both of you mean the world to me and I would give anything just to be able to say good bye. I love you with all my heart and I hope that after my death, everything will be OK. I wish you both the best life you could possibly have and please live it the way you would with me there – with happiness, excitement and adventure. Thank you for everything you have given me. You are the absolute best parents I could have asked for. I love you forever, wherever. Erica

Here’s what Erica’s mom, Carolyn, wrote:

We thought we had a lifetime to talk to you, call you on the telephone or e-mail you, but this will be the final time we will write:

Dear Erica, This is not the proper order of things – parents bury parents and grandparents. We are not supposed to bury our children, but yet, here we are saying good-bye for the last time. We hope you left this world knowing that we loved you more than life itself. If either of us could trade places with you, we would do so without hesitation. Our lives will never be the same. They say time heals all wounds, but not this one. We have holes in our hearts since you are gone, and we will be this way until the end of our days. We will never see you graduate from high school. We can imagine the smile on your face as you are with your friends when you leave high school for the last time as a graduate. We will miss seeing you swim in college, something we know you were looking forward to. We’ll never see you graduate from college – beginning what for most is the start of a lifetime of rich and fulfilling experiences. We will not see the love you show for others as you proceed with your career as a neo-natal nurse. How many babies will never know your soft and caring touch? We will never see you walk down the aisle with the love of your life. We will never hold your children. But the most tragic thing of all Erica, we will never hold you again – something we cannot bear, but must now deal with. Puffy, Puppy and Kissy are with you in your final resting place. We hope that whatever journey you take from here on – that they bring you comfort throughout eternity. Remember us as two people who loved you so much that even in death, we want you to be comfortable and at peace. Good-bye for the last time, Erica. This is not the proper order of things, but we will love you forever.

This sort of program and reflection may truly save lives… Do what you can to support this initiative.

This post originally appeared on Dr. Val’s blog at

Your mom will always be your mom, part 1

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Alright, I confess – my mother is probably the number one fan of this blog. Ever since I told her I’d be writing one, she has been reading it faithfully. I asked her not to post comments (only because it’s a tad embarrassing to have your parents interacting with you in front of an audience, and frankly, I haven’t noticed a single other blogger doing this!) but alas, she couldn’t resist on that last one. And that’s ok, because I know you readers don’t mind.

My mom does have rare occasions of impulse control failure. One of the more memorable ones was during “Parents Day” at my medical school. The Alumni Association had planned a reception for the parents of the incoming class of 2000 at Columbia U. College of Physicians & Surgeons. There was a full agenda, and my mom quickly noticed that the surgeon who’d saved my life was slotted to speak. The auditorium was full of hundreds of proud parents and their kids, all excited about embarking on a noble career in medicine.

Well, just as my former surgeon was introduced and was walking to the podium my mother jumped up and ran in front of him and asked if she could please have the mike. The MC was visibly nervous (not as much as I was), but after quickly sizing my mom up, she decided that it would be ok to let her have the podium briefly.

In one of the most moving speeches in recent memory, my mother proceeded to explain the story of how Dr. Schullinger had promised not to give up on me (a baby with little chance of survival) and how he had kept his promise to this day. She described the miraculous abdominal surgery (where he had to remove most of my colon), and how he had faithfully responded to every Christmas card she sent him, reporting on my progress for 26 consecutive years. She thanked him for what he did, and pledged that her daughter would devote her life to “doing likewise.”

Well, that brought down the house. Everyone cheered for Dr. Schullinger, who turned beet red (he’s a very shy and humble person) and stumbled through the beginning of his speech. It was a great moment in medicine.

Of course, I was teased mercilessly for the rest of the year – my classmates called me Valerie “semi-colon” Jones, and they would ask if my mother was going to help me with my homework… But kids will be kids.

What I learned from my mom that day is that this old Hebrew proverb is important to follow:

“Never withhold good from those to whom it is due, when it is in the power of thy hand to do it.”

So if someone has done something good for you, or you notice an act of kindness – why not shout it from the hill tops? May goodness rise above the low level grumbling that we live in day to day.

Let’s revel in the sunny parts of life.

This post originally appeared on Dr. Val’s blog at

Patient advocacy: a baby’s life is saved


Ok, so now that I’ve given you a really good example of the dangers of VIPs bullying doctors, I will present the flip side of the coin: a good kind of patient aggressiveness.

A 10 month old baby was vomiting and febrile, and her new mom brought her in to the hospital for an evaluation. She was told that it was gastroenteritis (my favorite diagnosis of late) and that the baby would get over it soon enough. The young mother insisted that she knew her baby, and that the infant had never been this fussy and that there really did seem to be something more serious at play. Again, she received eye rolls from everyone from technicians to nursing staff to physicians. “New mothers are so histrionic,” everyone thought.

But as the evening wore on, the baby became fussier and fussier, and began scratching herself all over. The nurses came in and tied her chubby arms and legs down so that she wouldn’t tear her skin. The mom wrung her hands all night. The doctor went home, yawning and sure that the baby would be fine in the morning.

Several episodes of violent, projectile vomiting ensued, and the mother pleaded for someone to take another look. No one would listen, as the doctor had written in the chart that the baby had gastroenteritis, so that was what it was.

In the middle of the night, after the physician had gone home, the mom insisted that the nurses page him to come back to the hospital. The nurses initially refused, but the mother told them that she would personally make their night miserable if they didn’t comply. The annoyed physician came back to the hospital against his better judgment, and found the mother and baby looking far worse than when he’d left. In fact, the baby’s vitals were becoming unstable and her abdomen was quite distended.

The physician ordered an abdominal x-ray series. It showed an advanced intussusception and the belly was distended with gangrene. He knew that she was likely to die. He asked the mother if she wanted him to call the general surgeon (who had no experience with operating on babies) or if she’d like to take a chance and get the infant to an academic center in New York City that had a team of pediatric surgeons on call. Time was of the essence, but surgical expertise varied greatly between the two options. The mom could tell that the physician was terrified, and her instincts told her that she should get the most experienced doctor to operate on her baby.

A few hours later, the baby was rushed into the O.R. at Columbia Presbyterian Hospital. The pediatric surgeon on the case told the mother that it was unlikely that the child would live, but that he promised not to give up on the baby. At that point, the baby was septic and seizing.

In a truly miraculous turn of events, the surgeon was able to resect the dead bowel and save the baby’s life. If the baby had arrived even a few minutes later, she probably wouldn’t have made it.

So in this case, I applaud the mother for being persistent and forcing the medical staff to take a closer look at this “gastroenteritis.” In our imperfect medical system, patients and families must sometimes advocate for themselves in order to get the attention they require. This story, in particular, means a lot to me, because I still bear the abdominal scar from the surgery.

This post originally appeared on Dr. Val’s blog at

VIP Syndrome – a no-win situation

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In my last post I described how VIPs don’t necessarily get better medical care. In this post I will describe a case study of a bully whose behavior wasted endless resources and time. This is a true story.

The son of a business tycoon experienced some diarrhea. He went to his local emergency room immediately, explaining to the staff who his father was, and that he required immediate treatment.

Because of his father’s influence, the man was indeed seen immediately. The physicians soon realized, however, that there was nothing emergent about this man’s complaints. After several blood tests and a stool sample were taken, he was administered some oral fluids and monitored for several hours, they chose to release him to recover from his gastroenteritis (stomach flu) at home.

The man complained bitterly and said that he wanted to be admitted to the hospital. The physicians, with respect, explained that he didn’t show any signs of dehydration, that he had no fever, his diarrhea was indeed fairly mild (he had only gone to the restroom once during the hours of his ED visit – and that was when he was asked to produce a stool sample). The man’s pulse was in the 70’s and he had no acute abdominal tenderness.

The man left in a huff, and called his father to reign down sulfur on the ED that wouldn’t admit him.

And his father did just that.

Soon every physician in the chain of command, from the attending who treated him in the ED right up to the hospital’s medical chief of staff had received an ear full. Idle threats of litigation were thrown about, and vague references to cutting key financial support to the hospital made its way to the ear of the hospital CEO.

The hospital CEO appeared in the ED in person, all red and huffing, quite convinced that the physicians were “unreasonable” and showed “poor judgment.” Arguments to the contrary were not acceptable, and the physicians were told that they would admit this man immediately.

The triumphant young man returned to the ED for his admission. Since the admitting diagnosis was supposedly dehydration, a nurse was asked to place an IV line. The man was speaking so animatedly on his cell phone, boasting to a friend about how the doctors wouldn’t admit him to the hospital so his dad had to make them see the light, that he moved his other arm just at the point when the nurse was inserting the IV needle. Of course, the poor woman missed his vein.

And so the man flew into a rage, calling her incompetent, cursing the hospital, and refusing to allow her to try again.

At this point, the ED physicians just wanted him out of the emergency room – so they admitted him to medicine’s service with the following pieces of information on his chart:

Admit for bowel rest. Patient complaining of diarrhea. Blood pressure 120/80, pulse 72, temperature 98.5, no abdominal tenderness, no white count, patient refusing IV hydration.

Now, this is code for: this admission is total BS. Any doctor reading these facts knows that the patient is perfectly fine and is being admitted for non-health related reasons. With normal vital signs, and no evidence of dehydration or infection, this hardly qualifies as a legitimate reason to take up space in a hospital bed. And when the patient is refusing the only treatment that might plausibly treat him, you know you’re in for trouble.

The man was discharged the next day, after undergoing (at his insistence) an abdominal CAT scan, a GI consult, an ultrasound of his gallbladder, and a blood culture. His total hospital fee was about $8,000.

Do you think he paid out of pocket for this? No. He submitted the claim for payment to his insurance company. Their medical director, of course, reviewed the hospital chart and realized that the man had no indication for admission, and refused medical care to boot, so he denied the claim.

So the son appealed to his father, who then rained down sulfur on the insurance company, threatening to pull his entire business (with its thousands of workers insured by them) from the company if they didn’t pay his son’s claim.

The medical director at the insurance company dug in his heels on principle, assuming that if he continued to deny the claim, the hospital would (eventually) agree to “eat the cost.”

In the end, the insurance company did not pay the claim. The CEO of the insurance company called the hospital CEO, explaining that it was really the doctor’s fault for admitting a man who didn’t meet admission requirements. The hospital CEO agreed to discipline the physician and eat the cost to maintain a good relationship with the insurance company that generally pays the hospital in a timely manner for a large number of patient services.

I ask you, my friends, does this seem fair? It’s because of these cases that doctors become (sadly) hard of hearing when it comes to patients who appear well, but may indeed have a serious condition.

In my next post, I will describe a true story of a baby whose life was saved because of her mother’s insistence.

P.S. There are many comments on this post, featured at Kevin MD.

This post originally appeared on Dr. Val’s blog at

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