Questioning medical communications

By Debbie Kerr

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Until I had cancer, I have to admit, I didn’t know how to talk to people who had cancer. I was totally clueless. I didn’t know what to say or do because I had no point of reference. None of my close family or friends had cancer. I had never taken care of anyone who had cancer. The only exposure I had to the cancer experience was through second-hand stories or what I saw on television. I was one of the “they” who didn’t get it.

Having now had cancer, I realize that “they” often includes the medical profession. While they might not have had cancer themselves, they have been exposed to a lot of people who have had it. They have seen the physical and emotional responses to cancer. They really should get it.

Some background
I took Tamoxifen for seven years to help keep my breast cancer at bay. As a result, I developed a thickened uterine lining. I knew this was a potential side effect, so my response to this news was sort of “Oh well.”

My doctor monitored me closely with regular pelvic ultrasounds. I had my uterine lining scraped twice (called a D&C) and had a polyp removed, but I still never questioned why I was being monitored so closely. It wasn’t until years after seeing my doctor that she mentioned that having a thickened uterine lining meant I had a greater risk of developing uterine cancer.  Now my response was, “Oh no.” This was an important tidbit and my doctor should have mentioned it earlier. 

Ironically, shortly after learning this information, I was told I had pre-cancerous cells in my uterine lining and now my only choice was to have a hysterectomy.  Now my response was, “This should never have happened. There’s no bleeping way.”

Until I asked what it meant to have a thickened uterine lining, I didn’t know there was a problem with the communication between my doctor and me. 

While real estate is about “location, location, location,” everything medical should be about “communication, communication, communication.”

My surgery was scheduled for February. Little did I know that my communication problems would continue.

Miscommunication
Based on my doctor’s visit prior to the surgery, I understood the following statements to be true:

• My surgery would be at 10:00 am.
• I would be staying overnight. I could stay longer if there were complications. I had received a booklet at my doctor’s office that explained this.
• Two doctors would be involved in my surgery (my regular doctor and another doctor).
• My surgery would be laparoscopic (no big incision).

The day of my surgery, I was told the following:

• I wouldn’t be staying overnight because my surgery was being done laparoscopically.
• Someone other than my doctor would be doing the entire surgery but my doctor would be in the operating room.

Little to no communication
My surgery started hours later than anticipated but no one told me anything. There was no reason given for the delay and no expected time was given for when the surgery would begin. 

Once I left my husband’s side to go to the operating room, the communication did not improve. No one told my husband that, even once I left him, I had to wait longer in another room before I actually got into the operating room. This meant my surgery didn’t start when my husband expected it to start; he would wonder why my surgery was taking longer than anticipated.

At 2:00 pm, the doctor talked to my husband and said the surgery went well. After that two or three sentence communication, no one talked to my husband until 6:00 pm. This was when he was told that I had been admitted to the hospital. Luckily, he had never heard that I was expected to be going home or he would have worried even more. 

During those four hours my husband waited, he tried to find out where I was, but no one seemed to know. While there was a board in the waiting room to enable people to track the progress of patients having day surgery, I was not on that board. It was like I didn’t exist.

Ridiculous communication
Once I was home, the communication and the corresponding stress did not improve. 

If you have never had cancer or been a caregiver, you can’t totally appreciate the stress of waiting for appointments and test results. Waiting is some kind of mind game; in fact, it can feel like some kind of torture. You can exercise. You can try to keep yourself occupied with fun activities, but it’s there in the back of your mind. It’s like trying to hold an inflated beach ball under water.  While doable, it’s difficult, and sometimes the ball pops up to the surface without any warning. 

Unfortunately, even years after a cancer diagnosis and treatment, waiting is still difficult.

In fact, I am still waiting for my pathology results to determine if any of the cells in my uterus were cancerous. I asked to be informed as soon as my doctor had the results. I said I wanted to know whether or not I had cancer. I didn’t want to assume that if I didn’t hear anything I must not have cancer.  

The response from my doctor’s nurse was, “You can discuss your pathology results with the doctor when you come for your follow-up appointment.”  Since my follow-up appointment is six weeks away from my surgery date, being expected to wait that long to find out whether or not I had cancer was ridiculous.  

Better communication
Patients are more than a package; in fact, communication about a package ordered online is often better than the communication between medical professionals and patients. People who order something online know the following:

• Where the package is coming from.
• The timeframe for when the package will be delivered.
• The current location of the package as it progresses from ordering, shipping, and receiving.
• If there will be a delay in the original delivery date.
• When the package is delivered. 

With tests results, including pathology reports, you may not know where the results will be coming from and, even if you do, you may not know if the results are available online and, if they are, where to look. You may not know the timeframe when the test results will be available, so you don’t know when the doctor is likely to have the results or when you can look online.  If you don’t know when the test results are expected, how do you know when no news is good news?

Medical professionals can improve communication by:

• Providing the same key pieces of information that you would get if you ordered a package online.
• Stating information that may seem obvious, because it may not be obvious to the patient (like the meaning of a thickened uterine lining).
• Having patients repeat information back to you to ensure what was said was understood.
• Recognizing and acknowledging the emotional impact of patients and caregivers who are waiting to find out information.  
• Doing whatever it takes to get test results to patients sooner rather than later. 

While medical professionals may not have had cancer, they, more than anyone else, have seen the impact of it. They should know how to communicate much better and we, as patients, may have to remind them of what is needed.