What I Wish I Had Known

As a breast cancer, or actually any kind of, patient, we often have complained about what I wish I had known before treatment, especially surgeries. I know I have whined blogged about it so many times myself that I can't even begin to list them all.

One big area of complaints is what I wish I knew about surgery before I had it. The lymphedema risk was sort of explained but it didn't sink in. Maybe my brain was preoccupied with 'my overwhelming second cancer diagnosis' so it just didn't register. Or maybe I just thought it would never happen to me, like any cancer diagnosis.

But I would like to make the case on the 'Angelina Jolie Effect' where many women are having prophylactic bilateral mammograms because they can. There definitely are instances where a prophylactic bilateral mastectomy is the best treatment option - especially BRCA positive or strong family histories, but not all.

Now breast cancer surgeons are pushing back on this saying that patients do not understand the full ramifications of this surgery. The doctors agree that women have the right to make the decisions about their body but they really want everyone to understand what it will really entail.

""It's a very difficult decision," ... "We think that any woman who wants to have a prophylactic mastectomy ought to be able to have a prophylactic mastectomy. However, we also believe that if more folks understood the statistics and understood the real facts, fewer people would be getting prophylactic mastectomy than currently are.""

See that's the kicker. Not everyone quite understands that impact of removing both breasts - both surgically and emotionally. Its not a in and out surgery. Its a long surgery, 10 hours even, and then can require numerous follow ups. And it may not look the way the patient expected. And cancer can still recur, even if less frequently.

So how do you make sure the patient understands? I really am not sure. Going back to my experiences with lymphedema, I had a separate appointment before surgery with a nurse on how to help prevent lymphedema immediately after surgery and in the long run. I was given printed materials and directed to on line resources. What else could they have done?

Even if they told me if you trip and fall, do not put out that arm to brace yourself or you will lymphedema. That is what happened to me. I could not have avoided that fall which started the lymphedema lifestyle for me unless I stayed inside all winter (I slipped on ice in our front walk on snowy day).

Last summer I took a fall and ended up fully tearing my ACL in my left knee. Because of my RA, I am not a good candidate for an ACL repair. First of all, the RA would probably leave me with a stiff knee which isn't much better than a less than supportive knee. Second of all, the ACL repair would make the knee replacement (that I really do need) less likely to work as well. It took two surgeons explaining this to me several times until I finally got it.

So what would it take to make sure patients understand what they are requesting? The multiple surgeries, the implants, the reconstruction, potential side effects, and more all would need to be detailed. Meanwhile the patient is sitting there thinking 'get it out of me NOW!'.

Its not easy. The patient is very stressed and coping with their diagnosis while simultaneously trying to figure out which treatment options they would have. I agree with the surgeons here that patients need to have a full understanding of the results of their surgery and that patients really need to do their part and pay attention.

Big hospitals forget who is important - the patient

A while back I read an article about how surgeons at Mass General were double booked for surgery and the hospital policy was okay with this. Double booking is when the surgeon is responsible for two surgeries going on at the same time. A follow up was published yesterday to show the results of this expose and whistle blowing by Dr. Dennis Burke.

"Burke was at the center of the Globe Spotlight Team’s report in October about the propriety and safety of a fairly common practice called concurrent surgery, or double-booking, in which doctors work on more than one patient at a time."
And as long as the doctor is within 1/4 mile of the hospital during both surgeries this is okay. And that's the new policy instituted by MGH as a result of the story. Really? I don't consider this that okay at all. I would not want the patient where the surgeon wasn't even in the room. I assume the surgeon is responsible for the surgery should be in the room at all time.

Burke is uncompromising on the issue. He called it unsafe and unethical, embracing a cautious approach that I think most of us expect from the doctor wielding the scalpel.The hospital's response to this article was appalling. They fired the man who spoke up about this issue. He was a physician at the hospital and ended up moving on to a new hospital, and all his patients followed him.

The hospital disagreed. MGH said it has taken careful steps to assure patient safety. The hospital accused Burke of violating hospital rules and perhaps federal privacy laws by supplying the Globe with copies of some internal records.
Being a whistle blower is a hard thing to do. And by being fired by the hospital, he has become a hero to others. 

"Burke thinks MGH and its advisers blundered by terminating him. “Probably the stupidest thing they did was to fire me,’’ he said. “If they didn’t, this wouldn’t be such a big story.’’

But it is. And that may explain why nearly 300 people turned out at the Fairmont Copley Plaza on Friday afternoon during a risk management seminar sponsored by Harvard Medical School to hear Burke’s version of events and why he believes concurrent surgery is unacceptable.

When he was done, the audience stood as one amid resounding applause." 

Who do you want for your surgeon? One that is up to 1/4 mile away while you are in the OR or the one who said this was wrong? The patient is the most important person here and their safety should be utmost.

What happens when you are sleeping

I think we should all be allowed to have an independent person in the OR while we are undergoing surgery if this is any indiciation:

"About half of all surgeries involve some kind of medication error or unintended drug side effects, if a study done at one of America’s most prestigious academic medical centers is any indication."

That is just plain scary. You go for surgery and then you have a 50% chance of medication error or unintended side effect. That is not good.

"“There is a substantial potential for medication-related harm and a number of opportunities to improve safety,” according to the study, published in the journal Anesthesiology. More than one-third of the observed errors led to some kind of harm to the patient."

But these numbers are pretty real. A recent study was done at Massachusetts General Hospital by observers. Previous studies showed much lower numbers but those were self reported by doctors.

"Drugs delivered during an operation don’t have the same safeguards other medication orders do. In most parts of a hospital, prescriptions are double-checked by pharmacists and nurses before they reach a patient. Operating wards are riskier. “In the operating room, things happen very rapidly, and patients’ conditions change quickly, so we don’t have time to go through that whole process, which can take hours,” Nanji said. While all the errors observed in the study had the potential to cause harm, only three were considered life-threatening, and no patients died because of mistakes, Nanji said. In some cases, the harm lay in a change in vital signs or an elevated risk of infection."

A few more thoughts:

"Not every mistake meant the patient got the wrong drug or an incorrect dose. For example, many errors had to do with properly labeling drugs when they’re drawn into syringes for delivery. Because most medications just look like clear liquids, having several prepared without labeling them poses a risk that the wrong one could be delivered. Those breaches in protocol were counted as errors. In about one-fifth of the problems, adverse drug reactions were considered unavoidable — for example, if a patient had a drug allergy that doctors didn’t know about ahead of time.  The study found that some kind of error was made in about one in every 20 drug administrations. Several medications are typically used in each operation, from anesthesia to antibiotics, so that rate translated into some kind of error or adverse reaction in every other surgery. Operations that lasted more than six hours were more likely to involve an error than shorter procedures."

Okay, I'm good with no more surgeries, thanks.

I'm not that standardized

Here's a new proposal. Give surgeon's a black box to help prevent medical errors, like they have in air planes.

The proposal:

"Inside the operating room, video cameras track every movement. Outside, a small computer-like device analyzes the recordings, identifying when mistakes are made and providing instant feedback to surgeons as they operate.

This is the dream of the surgical "black box." Operations could become flawless. Post-operative complications could be significantly reduced. Surgeons could review the footage to improve their technique and prep for the next big case."

The goal is so a surgeon learns of a mistake when it can be corrected and not after the fact. They get a computer assist. And more significantly they could be adopted in the US without FDA approval as they are not a device or anything.

I'm not saying that I am against improving medical errors or anything. I have myself dealt with a few mishaps in the OR but I do not think the human body is standard enough for this. Each human is unique. That's it. We are all one of a kind.

If someone wants to operate on me, I have many issues - from lack of thyroid, previous surgeries which have left scars, and more. I know they can be programmed into a computer before hand but still.  An individual human being is needed who can interpret the information and unique qualities of the body they have opened up in front of them.

I think of it this way. You are going to a strange place and you program the address into your GPS and start on your merry way. But then the GPS sends you to a road which has a detour and it recalculates around it, so you keep going. It even tells you when you are speeding to give you additional information and recalculates your arrival time. Then it forgets to tell you that the off ramp is on the left and not the right. And then there is an accident ahead so you try to get off the highway and make another detour. And then your GPS sends you down a one way street in the wrong direction.

You needed a human there to guide you to read the signs and notice the detour ahead. Or to tell you about a new problem the patient is having.

A friend had a bad colonscopy and had to have a colectomy. The surgery took much longer than expected because the doctor who removed the polyp at the colonscopy did not note correctly where it was that it happened so the surgeon had to spend quite a bit of time looking for the exact spot. What would that little black box do then? React like the robot in "Lost in Space"? 'Danger, Will Robinson, danger!' That wouldn't exactly prevent much of anything.

There is research going on with these currently in Canada with plans to test them in Canada, Denmark and South America.

But I am really not ready for them to be used on me anytime soon. I would rather have a better trained surgeon than a computer assisted surgeon operating on me.