Sunday, August 17, 2008

Blind trust

A CLL patient with an allergy to Tylenol, which is clearly noted in his chart, is treated at MD Anderson. Before his Rituxan infusion the nurses try to give him -- what else? -- Tylenol.

Another CLL patient -- me -- arrives for his first day of R-CVP therapy. “So, what are we doing today?” I ask the chemo nurse. “FCR,” he says.

A patient with a
high lymphocyte count goes to a leading cancer center, Dana Farber, to find out what’s wrong. He is diagnosed with CLL by one of the "names" in the business. Chemo nets the patient a CR; it is only when he is coming out of remission two years later that he discovers, at the Mayo Clinic, that he has Mantle Cell Lymphoma (a much more aggressive disease) and was misdiagnosed in the first place.

These stories hav
e one thing in common: No matter where you go for diagnosis, care, or treatment, people are fallible. A chart is not read. Chemo orders are misread. Assumptions are made at diagnosis when every last “t” should be crossed and “i” dotted. People get busy, sloppy, or inattentive. It happens in all walks of life, and one should not assume that the gravity of the situation -- your health, your life and death -- inevitably provides an extra measure of competence.

I will never forget the e-mail I received from the woman with stable CLL who went to see a world-famous expert and was told that her platelets had crashed. Whic
h had her in quite a panic until the doctor realized he was reading someone else's CBC.

The purpose of this post is not to slam health care professionals, most of whom do a good job in a busy and stressful environment. It is to remind you, dear patient, to stay on top of all the little things so that they don’t become big ones. As a managing editor told me when I was a cub reporter: “When you assume something you make an "ass" ou
t of ‘u’ and ‘me.’" Corny as hell, but prophetic.

Or as Ronald Reagan said about treaties with the Soviets, “Trust but v

Or as the woman I know who went in for a mastectomy and had the wrong breast removed said, “How was I supposed to know that I had to remind them which breast to remove?”

Read here about a man who went to the Mayo Clinic and lost an eye because he assumed he was being seen by a doctor but was instead being seen by a man who look
ed like a doctor and acted like a doctor but was in fact a convicted criminal with no medical training. How was he to know the man was not a doctor?

How was our patient at Dana Farber to know that he had been misdiagnosed? Sadly, this error was to cost him his life, for at relapse he had to proceed immediately
to a risky stem cell transplant and was unable to get anything close to the CR that was required for it to have a real chance of success. All too late he learned about a certain chromosomal translocation, t(11.14), that his first doctor should have been on top of.

That is the most extrem
e and tragic example of what can go wrong, for the patient tried to do everything right and the system failed him. Try as hard as we might, we cannot always navigate safely through a world of strange words, concepts, procedures, and tests.

But we have
to try. Our only recourse is to follow my managing editor’s advice and assume nothing, not even the most simple or obvious thing.

For example, Marilyn or I check every chemo bag that is attached to my IV pole.
Does it say "David Arenson" on the bag? Is the name of the drug correct? Is the dosage as planned?

Caretakers are extremely helpful for patients who are feeling sick, or worried and anxious, or who have been turned into zombies by medications. Benadryl lowers my IQ by about 50 points. Me . . . wa
nt . . . sleep.

In the case of the Tylenol at MD Anderson, the patient noticed the error. Later, as he snoozed away thanks to premeds with Rituxan dripping into his veins, his wif
e noticed that his blood pressure was not being taken, which is supposed to be standard procedure at MDA. That was error #2 of the day.

This sort of thing happens all the time. I know of one CLL patient who was given massive amounts of Decadron because the nurses did not understand the conversion between dosages of different steroids.
40 mg of prednisone does not equal 40 mg of dexamethasone (Decadron). Somebody assumed something and made an ass of themselves. Fortunately, no real harm was done.

Many patients live to tell the tale of a symptom that is ignored or dismissed but that turns out to mean something. My initial drop in hemoglobin last year, which
my doctor and the head nurse assumed was due to marrow impaction, seemed a little too suspiciously rapid to me for comfort. I knew it was AIHA before they did, and it was only my insistence on tests being done that confirmed the diagnosis before I collapsed in the street.

Of course, like everyone else, I am not always so lucky at second-guessing and fielding curveballs. In March I made an appointment to see a dermatologist. When I got there I was seen by the physician's assistant, who used liquid nitrogen to burn off a few suspicious keratoses on my head. Later I asked why the doctor did not see me and was told that upon arrival I should "ask for the doctor specifically," otherwise he would probably delegate to the PA if he thought the issue at hand wasn't significant.

Well, it's all significant to me, and I had assumed -- oops, there's that word again -- that if I made an appointment to see a doctor, that's who I would see. I had better luck than the Mayo eye patient but still was blindsided by this wrinkle in the process. On m
y next visit, three months later, I asked for the doctor, who saw a suspicious growth that was biopsied and which turned out to be a squamous cell carcinoma. The PA had tackled it with liquid nitrogen during my previous visit to little avail; would a better-trained eye have noticed something "significant" at that time and handled it better?

Live and learn.

Treatment, obviously, is one area where getting it right is essential, especially when it comes to chemotherapy. Here are some common sense precautions you can take:

Arrive on chemo day knowing what is supposed to happen. Bring a complete list of drugs and dosages, including premedications. Try to bring a caregiver with you, especially if this is your first chemo experience, who can stay on top of things, including your reactions when the drugs are infused. More than once Marilyn noticed that my face would get flush during Rituxan therapy. You cannot see your own face, and if the premeds have z
onked you out, you may not be aware as other symptoms come on. Nurses can get busy and step away; caregivers can watch things like a hawk.

Verify with the chemo nurse what is to be done, in what order, and at what dose and rate of administration. Let the nurse know if you have any allergies, or suspected allergies, to any of the drugs. Do not hesitate to ask to speak to your doctor, or the doctor on duty, if you have any concerns.

All this comes under the heading of "why you should become an educated patient," or at least an organized and thorough and vigilant one. Do not hesitate to be a pain, or to ask "stupid questions." Many health care workers appreciate patients who try to make sure things are going right. That benefits everyone.

Where does blind trust lead you? Perhaps to where you want to go. Or perhaps to life without an eye. As Louis Pasteur once said, "Do you ever observe to whom the accidents happen? Chance favors only the prepared mind."


Anonymous said...

Interesting comments. I've read these before and I've tried to be a good caretaker.

I can tell you, though, that nurses can get quite peeved at you if you interrupt their chats, their vacation planning, or if they are busy with someone else.

I'll never know if my mother was killed by nurses. All I know was my mom asked me for something that needed to be done (I think it was help to go to the bathroom). I stood by at the nurse's station, listening to a conversation between her nurse and another nurse about their upcoming weekend plans. I tried to get the nurse's attention, so I was insistently persistent. The nurse snapped at me, "Your mother isn't the only patient in this hospital, you know!" A few days later she was in the ICU dying of a hospital-acquired infection.

Retaliation? I'll never know.

The best advice, I guess, is to be very nice to the nurses, bring them candy or something nice. They do have the power of life and death over you and your loved one.

And never interrupt their vacation plans.

Anonymous said...

I am a physician as well as a patient. Essentially all of your advice is spot on. I have been constantly amazed over the years by how many patients simply want to ignore the details and leave everything to the healthcare professionals in the system, often choosing not to participate in very important decision-making.

As to the comments above, I almost have to wonder if there isn't some hyperbole going on. I have no doubt that nurses can be rude and inattentive, but, apart from the rare psychopath would not do anything to actively harm a patient.

As you may guess, some patients are at times more difficult and more demanding than others which may cause some ruffled feathers, but in recent years virtually all hospitals have strived to provide well trained patient advocates and tend to 'bend over backwards' to make amends for misunderstandings and frank problems.

Any healthcare personnel who are rude or inappropriate in ANY way should be promptly reported to their supervisors so that the situation can be dealt with immediately and appropriate "growth and learning" can occur as needed.

Always know what you are supposed to have done and how it is to be accomplished. Never be surprised and be certain when things are changed that everyone is on the same page. If you have an allergy, the nurse should be checking you about it everytime that medications of any sort are given.

By the same token, be nice and kind to the nurses as they are overworked and under appreciated.

All of us err. During my first treatment for CLL a significant, but not immediately life-threatening error occurred. I used the opportunity to help the personnel involved alter their procedure that it would be much less likely to happen to someone else in the future.


Anonymous said...

Amen doubled. I, too, have dodged a couple of error-grenades during treatment for CLL. In one case, the doctor had lowered the dose of chemo for one round because of low counts. He told me that when the counts bounced back (which they did) the next round would be back up to normal dosage. When the nurse was hanging the chemo bag for that next round, as always I checked the data on the bag and saw that it was the lower dosage. I told her that I was supposed to be back to the normal dose. She disagreed. I told her to call upstairs to the doctor. She didn't seem to want to bother him. I told her she had to. She did, and was told that I was right. The next time I saw the doctor I told him the story and suggested that something went awry in their line of communications and to check what it was so that it wouldn't happen to anyone else. He actually said to me that the difference in dosage in my case wouldn't make any difference! I told him that that may or may not be correct, but that it was hardly the point.

dervishmama said...

Great post David. I couldn't agree more. Its so important to be on top of whats going on. When I was in the hospital at 35 weeks with possible pre-enclampsia ,it made all the difference to have Jason watching out for me and double checking my charts,fielding unpleasant arguments with clueless night nurses..ect..
I am very grateful that Marilyn is so sharp with the details, you couldn't have a better caregiver.

Grateful said...

Recently a patient went to surgery for problems with his left leg. On the way into the operating room, he said, "Make sure you operate on the right leg," meaning right as in the correct (left) leg. His comment was misunderstood, and at the last minute his operating instructions were changed to operate on his right (wrong) leg.

You can always load all the information into your Iphone, program it for time checks, and call for help if needed.

Anonymous said...


Thank you for the well written post with much food for thought. We have missed your blog entries and are glad you have returned. We miss you on the Cll forum. Hope you are well and happy.

Dean and Sara ( CLL gal)

Anonymous said...

In 12 years of dealing with CLL, I have experienced 10 hospital medication errors; uncountable lab errors; been the recipient of 3 hospital acquired infections while an inpatient; and witnessed too many negligent actions to record.

I even had a head nurse take a bloody IV catheter out of my arm and throw it on my dinner plate! I trust no one when I am hospitalized. My plan is working well as I have always been able to maintain my mental status. If that disappears, I will be in trouble!

Patients beware. Trust no one. Educate yourselves. Report all negligent actions to the proper authorities. Your life is more precious to you than anyone else.

Anonymous said...

This is my second comment on this post and I cannot argue that negligence doesn't occur...after all we are all human. More important for those with illnesses such as CLl to realize is that the 'playing field" has changed and, despite incredible advances in technology and knowledge over the years, hospitals have, in my opinion, become very dangerous places because of the ever present threat of hospital acquired infection and the increasing chance of human error as therapies become more sophisticated. The latter can be dealt with by setting up and following protocols with checklists which will vay from place to place.

The former (infection risk) can also be downsized if careful attention to procedure and protocol is followed, but in a busy hospital with overworked staff and insufficient funds to upgrade all of the necessary working parts (private rooms,automatic sinks, automatic towel dispensers, automatic that people don't spread infection by touching things one after another, eg) and with ever increasingly ill in-patients the risk of hospital acquired infection is very real. Anymore, you need to be really sick to pass the "admission" test, so my advice to everyone is a bit contrarian...MAKE EVERY EFFORT TO STAY OUT OF THE HOSPITAL AND EMERGENCY ROOM!!!

Currently I am undergoing therapy for my CLL once again and my T cells are non-existent and my Neutrophils are threatened. I am VERY, VERY careful about hygeine (to the point, almost, of driving my wife crazy) but my plan is to avoid developing any problem that can begin as a nidus of trouble that might lead to the need for the DREADED hospitalization.

I never touch a door handle, faucet, toilet, towel dispenser or handrail directly...that's what paper towels are for! I wash frequently and well and I don't usually shake people's hands (the "yoga bow" seems more refined anyway).

Despite this I still enjoy my free time and I have even played golf (I ask people not to pick up my ball or my clubs and I don't handle the flagstick) during my therapy.

My theory is that if you avoid the little problems, this will prevent the bigger problems.

This ironic because most of my career I have been a "softie" viv-a-vis admitting people to the hospital on the theory that many people could be more comfortably cared for on an in-patient basis. When people are really sick, they should still be there...they should, however, always try to avoid the larger problems in the first place by being proactive and taking whatever illnesses they suffer seriously. Obviously, some problems such as acute appendicitis or cholecystitis are impossible to prevent, but then you must depend upon your own vigilence in the hospital and good luck!