A variety of readers will visit our site for information. Some will read everything and want more. Others, are looking for a brief synopsis. That's what this page is for...just the basics. If in the future, you or someone you love has to have surgery at a teaching hospital, we suspect you'll develop intrinsic motivation to come back and read through all our tabs to learn. We're here for you now and we'll be here for you then.
Brief Overview of What You Need to Know
Q: What's a ghost surgery? A: "The practice of performing surgery on another physician's patient by arrangement with the physician but unknown to the patient." Citation: Merriam-Webster Dictionary
Q: What's NOT a ghost surgery? A: In order for it to be a true ghost surgery, the surgeon you choose and consulted with never perform ANY part of your surgery. The surgeon you hired never touches you. He/she could be performing another surgery in a different operating room or even performing another surgery on another patient in YOUR operating room. The surgeon you hired could be in the break room eating lunch, so long as they are available and on the floor. If you are wondering if you're a victim of ghost surgery yourself, you can visit our page, "Am I a Victim" to learn.
Q: What is a general misconception most people have regarding surgeries in teaching hospitals? A: Most people believe the surgeon they hired to perform their surgery will be at their bedside from start to finish. Typically, this isn't the case and realistically, it's also okay. Residents are still doctors, even if they're in their first or second year. They've graduated medical school and second year residents have a license to practice medicine (first year residents a permit). Closing up an incision is a great example. If a first year resident learned how to do this in medical school, watched his/her attending perform the procedure 10-20 times, then performs it under the attending doctor's supervision 10-20 times, then they're likely very proficient and don't need the attending to stick around unless it's a legal obligation. Birds must learn to fly.
However, there are no federal or hospital guidelines requiring the specific number of times a resident or fellow must perform a procedure with supervision. From the perspective of a teacher myself, I can understand this. It might take one resident 12 times and another 20. Procedures are different and patients are different but more importantly, the learning curve of each sprouting doctor is different. These factors are why federal guidelines allow each teaching physician to make their own determination as to when a resident or fellow is ready to perform a surgical task, whether easy or difficult, unsupervised.
However, we hope our story makes teaching physicians around the world slow down and critically evaluate their current release model. How can they tighten it? How can they be POSITIVE, not just sure but POSITIVE, that their apprentice is truly ready?
Q: I'm about to have surgery. How can I make sure this doesn't happen to me? A: If there is any page on this entire website you need to go read, it's this one..."Prevention."
If you want the basics and don't have time to read our page on "Prevention," read below for a summary.
1. Prior to any surgery or procedure in any hospital, the surgeon has to go through a process with his/her patient called 'informed consent.' There are two parts to this...one is done verbally and the other through a written form you'll be asked to sign. The purpose of this process is for the doctor to disclose (or give) the patient ANY and ALL information that would be necessary or relevant for his/her patient to be able to make an INFORMED DECISION as to whether or not they will move forward with the procedure. As of now, the type of information the surgeon has to disclose (in writing or verbally) isn't mandated by law. Hospitals have to follow "Interpretive Guidelines" set by federal law. The word "Interpretive" right there should raise a red flag for everyone.
2. Due to federal laws surrounding the informed consent being "interpretive," we consider every current informed consent form, regardless of the hospital it's coming from, UNINFORMED CONSENT. Why?
Because current federal law doesn't require hospitals to list or reveal the name or names of any or all surgeons performing surgical tasks on you. Instead, hospitals are only required to name the attending surgeon on the floor...the one in charge of the residents and fellows. This attending surgeon may perform all of your surgery, some of your surgery or none of your surgery. Literally, the surgeon's name listed on the top of the form as the surgeon legally NEVER HAS TO TOUCH YOU.
In our son's case... -We flew over 600 miles for our surgeon. -His name was listed as the only surgeon on the informed consent -We were under the impression he would be the one performing our son's entire surgery with residents there to watch or just assist. -Every sheet of paper we were given regarding scheduling listed him as the surgeon.
BUT... -He never touched our son that day, much less operated on him. -OR notes can only show verification that he entered to operating room at the closing of our son's surgical sites. -OR notes show and the hospital admits that Jack's entire surgery was completed by one resident. The hospital has also now admitted that the attending we hired to do our son's surgery was not performing any surgical roles that day at all but was only acting as a "consultant." Are you wondering how this can happen?
The answer has always been out there but for some reason no one has ever had a reason to broadcast it...on a national level, until now. Until us.
"Interpretive Guidelines," set by a division from The Center of Medicare and Medicaid allow this. Therefore, a process and precedent that was historically created to protect patient rights, currently propagates deceptive and misleading practices, thereby RESTRICTING patients' rights.
What right is our government currently enabling to be restricted from it's American Citizens? The right for a patient to know WHO, any and all of the WHO's, that will be surgically manipulating their body, as well as what each of those "WHO's" will be doing to a person during the patient's surgery.
We have spoken with the BIG folks in charge (link here), who are located just 45 minutes from Washington, DC. Let me tell you...it is NOT easy getting access to these people but a mother's love is a force, a force so strong that most often only three things are needed for advocacy. Time, determination, and an unyielding stance.
Their highest leadership is aware of our stance and one of them took the time to listen to what we think must be done. CMS' current interpretive guidelines must be changed to mandate that the names of all surgeons involved during a surgical procedure, as well as the respective role each surgeon is intending to play. This needs to happen prior to surgery, during the verbal and written informed consent process. Secondly, we believe it should be mandated that patients be informed if the attending will not be present during the entire procedure. We're not talking about putting this in fine print, saying it may or may not happen. We want patients to have to put their initials after this. Actually, we want patients to have to place their initials in front of every single clause on that sheet of paper, clauses that are almost always left out during the verbal consent and clauses that most people never, ever read.
Q: Are ghost surgeries legal? A: No. You have the right to determine who and what is done to your body. The purpose of the Informed Consent Law is for you to be able to make an informed decision about your medical procedure, PRIOR to receiving it but our government's current "Interpretative Informed Consent Guidelines" are weaker than my abs and we are demanding change.
Whether the "Interpretive Guidelines" are weak and allow loopholes or not, they have one thing right.
"A patient or a patient’s representative must be given the information needed in order to make “informed” decisions regarding his/her care."
The problem with that sentence above though is its subjectivity. Who decides what information is needed? Well, we're telling you...the who's performing the what's of your surgery.
Q: What tips should I follow to make sure my informed consent process does not stay uninformed? 1. Ask your surgeon if he/she will be present from start to finish of your surgery. Don't expect the answer to be yes and it's OKAY if the answer is no. You just deserve to know because it's your right to be informed. You can also ask, "Will my surgery be overlapping or concurrent with any other of your patients?"
2. Ask specifically to your surgeon, what part of the surgery will you be doing? What part(s) will residents or fellows be doing?
3. Hospitals and surgeons are not going to appreciate this next suggestion of ours but unless the public starts demanding it, things aren't going to change. Tell your surgeon you want the names of all surgeons listed on the informed consent and if you want, ask the task that each will be performing to be documented on this paper as well. There's no place for them to add this. For this past surgery, we asked that the resident and fellow simply write their names in the margins. This was our first step in saying, we have a right to know the who's and we want it documented before the surgery. This can get tricky if informed consents are signed at pre-op appointments, days or weeks prior to a surgery because the surgeon may simply not know who will be with them that day. However, that informed consent can be printed out when you arrive at the hospital and those names can be added then. And we are making our stance clear right now. Any hospital unwilling to put the who's down on that form PRIOR, we suggest you just walk away and go to a different hospital that will. The names of the surgeons that will be providing your care will be in your operating notes, sure. But that isn't the point. The point is YOU have a right to know BEFORE. Not after.
4. DO NOT SIGN A DIGITAL PAD FOR THIS FORM. ASK FOR THE INFORMED CONSENT ON PAPER. They have to provide you the paper copy if you ask. Doctors legally have to go over the form with you and are instructed to use language that a common person can understand. Allow them to do this. But the reality is that 99.99% of the time when they go over it, they skip the clauses that mention residents or fellows performing part or all of your surgery. So then, when they ask you to sign it after they go over it, say"If you don't mind, I'd like to read it myself to make sure I I completely understand." 5. Feel free to put a check mark or initial after you've read each clause. Then you know you understand what you've read and have had the chance to ask informed questions.
Now's a good time to visit our page, "Psychology at Play." Due to psychology of the mind, many people avoid reading hospital documents in front of their doctor. Why would they want to insinuate a lack of trust to the person they're getting ready to entrust their life with? Doctors are busy. Why would we take up their time when they have dying patients they might need to get to?
But ask yourself this.
Would you rather be uncomfortable for ten minutes OR would you rather die, come out disfigured, or suffer in pain for the rest of your life?
Although most ghost surgeries go off without a hitch, every one of the things mentioned above has happened as a result of an inexperienced surgeon being left to do the job they weren't hired for by the patient as well as the job they weren't ready to perform, unsupervised.
The picture above is the FIRST result of our son's ghost surgery. We went to The Mayo Clinic in Minnesota to have two batteries switched out in his chest, the batteries, used for a needed medical device that connected to his brain. His first symptoms were red incisions and fever, his chest cavities filling with puss. Within hours of that he developed a staph infection, hospital tests and symptoms revealing sepsis.
When all is said and done with this, because we're STILL not done with this, he will have needed five additional surgeries (two in his chest and four in his brain). What's sickening is that all of these additional surgeries were preventable and should never have happened. Had the surgeon we hired performed the surgery, they wouldn't have happened. Instead, a resident was passed off with the task, left without direct supervision if any. He did have one man by his side...another resident who only had a permit, not a license. We're unsure if he was there to watch and learn (from another resident who didn't know what he was doing) or was there to help with the surgery, when he wasn't legally allowed to practice yet.
The operative report doesn't place the attending in the room until closure, a CRNA or any peri-operative measures taken to prevent the pockets inside our son's chest from becoming infected.
This webpage is under construction and has not been edited for any type of grammatical or structural errors.
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