Communicating Evaluation Results: How I Changed My Approach

I want to share a personal story with you that has shaped how I am communicating with families.  2016 was a rough year for my family.

The Tale of Two Doctors

At the end of 2015, my husband had a routine physical which showed high levels of PSA, which is a potential indicator of prostate cancer.  He was in his forties and his doctor recommended that he have a biopsy to rule out cancer.  There are a lot of emotions and conversations that you go through when you are waiting for test results.  Most of it revolves around two main ideas: 

• It’s probably nothing-why am I getting myself worked up about something when it’s probably nothing.  
• But what if it is…

When we went in to get the biopsy results-we weren’t really sure what to expect.  Should we take the day off?  But why would we take the day off when it is probably nothing?  But what if it WAS something-would we really want to go into work?  There was a lot of uncertainty.  

I haven’t had to take my child in for a speech and language evaluation-but I would imagine a parent of a young child who is not yet talking may go through a similar type of dialogue.  They may realize that something is different with their child’s development-but they may hope that they will be told that everything is fine-and there is nothing to worry about.

The Results

The doctor smiled when he entered the room and I felt a huge sense of relief.  

Phew.  It was nothing.  

So it was a bit of a shock when he opened his mouth and said, “You have cancer.  Your score is a 5 so I wouldn’t do treatment yet, it’s a quality of life issue.  You can just come back every 6 months and we will test you and then take out your prostate when it seems like your cancer is starting to grow.”  We left the doctor feeling confused-we were just going to wait for the cancer to get bigger?  Weren’t you supposed to take cancer out right away?

We had a 2-3 minute conversation with an experienced doctor-where we learned that my husband had cancer.  We had suggestions to try to have another baby now.  We didn’t have any literature, we didn’t know about other options for treatment and ultimately, we didn’t have trust in our doctor’s opinions.  Feeling the need for more information, we did the worst thing ever.  Yup.  We tried to get a second opinion from Dr. Google.  I’m not sure that anything good ever comes from Dr. Google.

I know that there is research on how much a patient hears once you have been given a diagnosis.  And I appreciate the doctor leading with the important information too-so who knows how much we would have remembered. Maybe we were just “shooting the messenger.”  But as I was consulting with Dr. Google, I wondered how different my experience was from that of a parent with whom I was meeting to discuss an evaluation.  “So we did testing on your child and they got a standard score of 80, so he does/doesn’t qualify based on your insurance criteria/or state standards.”  I hope that I explained it better but it is difficult to separate out everything that I know because of my schooling and experience from what an average parent would know.  It got me thinking.

The Second Opinion

We are fortunate in that we live relatively close to the Mayo Clinic, so we decided to seek a second opinion.  It was our first of many trips down to Rochester.  We sent in our labs and met with the intern and then the surgeon.  While we were there the doctors explained what the prostate did, where it was located and where Jim’s cancer was located.  We heard about three different treatment options and pros and cons of each treatment.  We also had a new recommendation-for more testing.  The doctors felt like we should dig a little deeper in order to make a decision on active surveillance.  When we left this visit, we had information, handouts and probably most importantly: trust in our doctors opinion.  

It was pretty clear to me that the doctors and interns at the Mayo probably get coaching and training on communication skills.  They made eye contact when sharing information.  They spoke slowly and took time to check for understanding.  They used visuals including the test results and drawings of the prostate.  They provided handouts and written information at the end of the appointment for us to review at home.  And it took about 15 minutes.

I’ve been working as a speech language pathologist for almost twenty years.  I think it’s easy to get into a habit of reviewing evaluation results with families in a fairly quick manner, and I don’t know that I was always taking time to explain what my diagnosis meant and why speech therapy would help.  So I’m working on improving my communication to families.

•  I try to space out the information over several sessions so I don’t overwhelm the family.
• I’m making an effort to slow down when I speak and check for conversation.
• I use handouts and visuals that explain what standard scores mean.
• I start with the important information-the diagnosis and then talk about the testing that I did that led to that diagnosis.
• I try to provide additional handouts on speech therapy that my families can share with loved ones to explain their child’s articulation or language disorder.

 

One year later:

 

There were a lot of trips to Rochester last year.  At the end of all the testing, the doctors felt like there was more cancer than the initial results had suggested so Jim has his prostate removed last summer.  It was the right decision as the cancer had started to spread-but they were able to get all of it.  He was retested a few months ago-and there are no more signs of cancer in his body. I’m grateful to my amazing neighbors who offered to watch our son every time we went down for testing or the surgery.  I’m thankful to the woman at my son’s school-who didn’t really know us-but still brought over frozen dinners for us when he was recovering.