And Back Again…

Now that we are all clear on Informed Consent, we know that is a huge part of self-advocacy. It’s also part of obtaining a diagnosis. Or a few.

However, even armed with knowledge that you have a say in your medical care and what you are willing (or not willing) to go through, it is only the base you stand on when it comes to obtaining a proper diagnosis.

As a nurse, I am fortunately (or unfortunately) armed with a bit more knowledge regarding anatomy, microbiology, pharmacotherapeutics, procedures, etc. This conveys into a trust with any particular physician. In my case, it was initially unfounded trust. Hey, it happens.

After I fell, I went to the closest emergency room. After an x-ray that was “normal”, they referred me to an orthopedist. I had already had a run in with one of the ‘big’ ortho groups in the area after my daughter injured her ankle. I also had a run in with a different group after my consent form for an arthroscopic procedure on my LFET knee was written for my RIGHT. (I probably should have discussed this in my last post). So, needless to say, I felt slim on options and I hadn’t necessarily heard anything negative about this guy. {NOTE: as a nurse, my definition of “negative” about a physician centers on medical ability more so than bedside manner}

Initially, I didn’t have any trouble with the guy. He ordered an MRI (totally appropriate). He wanted me off of work until after the MRI (also appropriate). I worked at a relatively small assisted living facility at the time. By small, I mean we had a total of 4 nurses…and we were currently short one. The facility itself was 2 floors with an additional single level in the back. Overall, it has approximately 150 rooms. I NEEDED to work. My residents needed a nurse there and there wasn’t enough to go around. With that necessity discussed, he wrote minor restrictions so I could work (yay for communication!). I left with an ace wrap, a return to work (with restrictions) note and crutches as needed. A good initial appointment in my mind.

 Due to an insurance snafu at work (more on that in a future post), I ended up working for a month before the MRI. This equaled about 250 hours on my feet. Yep. 250 hours. I used the crutches to get from one side of the building to the other. I used some crutch covers I had gotten for my youngest in 2006 when she broke her leg. Since there was pockets in the covers, I would put the nurse’s cellphone and any little items I needed to take back and forth in the pockets. My health care coordinator (assisted living’s version of a director of nursing aka, my boss) had scheduled an additional medication tech to assist me to reduce my ‘walking/upright/on my feet’ hours. Some days it helped and other days it didn’t. I would be barely able to move by the time it was time to clock out. Once I would get home, my knee was so swollen you could see imprints from the neoprene sleeve I had on.

Orthopedist's drawing of my fracture

I *thought* it was simply another meniscus tear but it was a fracture of the patella (kneecap). It was what is referred to as a “non-displaced” fracture, meaning while there was a break in the bone, it still stayed together. All that was required was to wear the fancy brace and stay off it.

Except it hurt like hell with the brace on. So I called the ortho. He had me come in for an adjustment. That lasted until I removed it for a shower. Once I put it back on, it wasn’t long before the pain increased again. So I called the ortho. He had me come in for an adjustment. That lasted until I removed it for a shower. Once I put it back on, it wasn’t long before the pain increased again. So I called the ortho. At this point the only thing they could do was put me in a full leg immobilizer. Which would cost more money. Ugh.

I decided to do the only thing that could be done…I stayed in bed (except going to the bathroom) with my leg straight without the brace. If I needed to go to anywhere that was too long to hop to, I put the brace on.

It wasn’t long before I noticed when my right foot slid over my left ankle, it tingled. Just for a second and it seemed to have to be a particular area to be touched. But around that time, I also noticed my foot felt really cold. So I started keeping one of those soft aloe infused spa socks on it.

Next came the vice around my thigh just above my knee. Now, by the time this began, I was allowed to walk wearing the brace, I was in physical therapy and there was even a bend to the knee in the brace. It was a small bend, but my knee and I both knew it was there.

I had been in the ortho’s office multiple times by this point, in addition to discussing the issues with my physical therapists. My ortho seemed unphased at all. Like this was normal. The nurse in me knew it wasn’t, the patient in me trusted the doctor. I went with the nurse in me and insisted on another MRI.

Things were about to get interesting.

It all starts with one step.

Take A Step Back

With any diagnosis comes challenges and sometimes more questions than answers. As an adult, when you have a cold, you tend to know what to do. When your baby gets a cold, suddenly you are clueless. This cluelessness also applies if you are diagnosed with something you have never heard of before or have no idea how to manage. So many questions pop in your head you have no idea where to start. So you talk to your friends, your family. They bring up more questions! You hit the computer and Google it. Now you have entered the realm of what those of us in healthcare call a ‘google doc/doctor’. Nothing wrong with that in my mind, as long as you don’t hold everything you find as the full story. I say, google everything. Read all the information you can find. Compare information from different sites. Then…formulate questions for your medical team. Informed Consent is the meat and potatoes of your medical care and, as it so happens, is the main topic of this blog post.

Informed Consent.  You’ve heard it said, hopefully, many times if you’ve ever received more than a general checkup or you’ve at least seen it on a medical form that you have signed but, do you really know what it means?

Certainly you are not being asked to sign an Informed Consent every time you walk into a doctor’s office.  Should you be? I suppose that may eventually happen with the way things are headed.  Dang. I’m getting off topic.  At its core, an Informed consent is designed to ensure a patient has been informed of the benefits as well as the risks of a procedure prior to consenting to it, as well as any alternatives. 

By definition Informed Consent is a legal document prepared by a healthcare provider to obtain patient (or patient representative) permission to perform a procedure, admit into a facility (hospital, long-term care, etc.) or take part in a research trial. It is signed by the patient under terms of understanding the implications of what is being performed; where/why admission is occurring; what is being researched & the implications of the trial. Informed Consent is often used in legal cases (civil or criminal) to defend or prosecute the provider.

Seems simple, right?  You go to the doctor for an issue. Doctor decides you need an endoscopy. Okay. Doctor leaves and you proceed to the front desk to discuss scheduling it. Done. Well, in a fantasy world it is. Or perhaps if you trust your doctor implicitly. So then why do you need to sign a piece of paper? Your doctor told you what you needed. However, it is just outside the boundary of the intention of Informed Consent.

What really should happen is: You go to the doctor for an issue. Doctor decides you need an endoscopy. You and the doctor discuss why the endoscopy; what the expected results are; what the risks are; what other options you have (this is the one most frequently left out). Once that conversation occurs, you are informed, thereby able to consent (or refuse). Ta-da! Informed Consent. Doctor leaves and you proceed to the front desk to discuss scheduling it.

I’ve seen all too often (on both ends of the medical stick) the discussion part slides to the wayside. This happens under a variety of circumstances:
                As the patient, we go home and do our own research. Doing your own research is not a bad thing if you have above the general knowledge of anatomy and medicine, in fact, I encourage it. It allows for more discussion between patient and physician. That’s usually where the conversation ends.
               The physician, either overbooked or simply not aware of his/her own bedside manner, tells of his plan and leaves the room. Sadly, this happens far too often.
               When you return to the doctor/outpatient center for the procedure, a piece of paper (Informed Consent) is handed to you by the nurse and you are asked to sign. With the Informed Consent now handed to you by the nurse, you suddenly have questions. The nurse happily answers your questions to assuage your fears.  Except, that’s not the way it is supposed to be handled. By virtue of the design and considerations of the Informed Consent, all parties concerned should be involved in the process, predominately the physician performing the procedure or providing the service.
               In fact, from the nursing side of this, nurses are advised against offering further information regarding the procedure identified on the consent. This information should be expounded on by the physician. That being said, the nurse should ensure your understanding and bring the performing provider to the conversation if there is patient concerns or if the nurse feels as though the patient does not understand specific aspects of the procedure.
              

We all know that once we leave the doctor’s office, more questions arise.
               Write them down. If you have multiple or serious healthcare considerations requiring frequent provider visits &/or invasive procedures (technically, an IV is an invasive procedure but I digress again), carry a small notebook in your purse/glovebox to jot questions down. Or use a notepad app on your smartphone. Sometimes it becomes easier just to hand the paper with your questions to your medical team. Honestly, I don’t know how I feel about handing them my phone. Either way, arm yourself. As the procedure date gets closer, call your physician to either speak to them over the phone or make an appointment.

               Go ahead and google the recommended procedure. Often, the littlest details that matter to an individual get left out. You may also find that what you thought was a big deal, really isn’t. Again, take into consideration where the information is coming from. Is it a personal blog site (such as this one)? Information provided by the company that sponsors/invented the procedure? Is it a specific medical professional/company site in opposition/agreement with a procedure/medication? An independent research group? All of these aspects should fall into your purview when investigating your healthcare plan. Oops. Did I just say your healthcare plan? Remember that. It is your healthcare plan. And, while you may not have gone to medical school and you may not understand every medical term thrown at you from your healthcare provider or the independent google research you have done, it is your healthcare provider’s responsibility to explain it to you. Ergo…Informed Consent.

One of the most under-discussed issues regarding Informed Consent is when there are options that your doctor does not perform. Whether due to limitations of his/her training or certification; insurance issues; equipment availability; even personal preference, not every doctor performs every procedure that may be within their capabilities. Often, those options are not mentioned or discussed in much detail. On the topic of Informed Consent, all of the options should be discussed. Most of the time, we find out about these options after we get home and discuss the visit recommendation with friends and family &/or research the topic ourselves.

On the other side of the spectrum, you have the right to refuse the recommended procedure. In fact, you can order a stop to the procedure once it has started. You can rescind your authorization at any time. Of course, your healthcare team also has the option of refusing to continue providing care as well.

The key to all of this is communication. Do not be intimidated about speaking to your providers about anything. What you may see as horrible, they may see as an everyday occurrence and vice versa. Telling your child who doesn’t like fish that the meat you served is chicken, isn’t the same thing as telling your doctor you haven’t eaten within the timeframe you were told not to eat. Yes, you may need to re-schedule your procedure but at least you will have eliminated the possibility of choking on vomitus during or after the procedure.

In conclusion: Seek out as much information as you can before you consent.

It all starts with one step.