Inside the Patient Experience—Elizabeth’s Journey #3

Posted by Kristin Baird on May 3rd, 2011 • No Comments »

This is the third entry as I follow along with a patient undergoing a 6-week cancer treatment.

Managing expectations is crucial to creating a positive patient experience.  Patients are often feeling scared and vulnerable and need to know what to expect in order to prepare physically and psychologically for what will be taking place. In this case, Elizabeth is a veteran of the medical system and typically asks questions to understand what to expect.  In the following scenario, there were at least two missed opportunities for effectively managing the patient experience.


I got called in for the first chemo treatment today and had the first instillation of the drug directly into my bladder. It’s a relatively new treatment that has been in use for two years at only two medical centers and has had good results so far, according to the nurse who did the instillation today.

The process was very different than what the xray tech had told me to expect just yesterday.  He said I would be able to walk around, shop and just void the stuff out after two hours.  But the friendly nurse who did the treatment today had been given a strict regimen that was “unusual”, she admitted.  It was slated to be two hours long with me changing position every 20 minutes.  The table was positioned so that my head was down and feet up.  The doctor explained that this was to ensure that the chemo saturated both kidneys, the ureters and bladder.  I had no idea I’d be strapped to a table, upside down for 2 hours!

I didn’t make it for the full two hours.  The chemo burned so badly that I could hardly stand it.  I felt as if my bladder was really full and that was uncomfortable too.  And sitting up from an upside down position without the benefit of side rails or anything but a rolling cart to assist me, was darn near impossible.   After forty minutes of this I called the nurse and she gave me the remote so that I could change the position of the bed each time I had to sit up.

I had access to a TV but couldn’t see it because of the positions.  Next time I’ll bring the ipod and listen to books or music instead.  I just wish they had prepared me for what this was going to be like.

After 11/2 hours the burning and urge to void was too much and I called for help.  Another nurse responded.  He was very reassuring.  He told me that everyone was different and immediately drained the catheter. I welcomed his reassurance – it relieved my embarrassment and feeling that I was somehow “failing” my first chemo treatment.  He explained that the drug literally burns off layers of tissue and is what makes the substance so effective.  With directions to go to ER if I got chills and a temperature over 100.4, I was discharged and told to expect to be tired.

Notice that Elizabeth used some very positive adjectives to describe the nurses. The first was described as friendly. The second was described as reassuring because he explained how the treatment worked and let her know that it is alright that she only lasted 1 ½ hours as opposed to the 2 that were described earlier. The other very positive element of this encounter was the discharge information. Elizabeth appreciated knowing what to look for and what steps to take should she encounter problems.

What could have made this experience better? Information. There were 3 missed opportunities for managing expectations in this encounter.  First, the staff person who described the procedure on the previous day had set Elizabeth’s expectations. He said it would be a 20 minute procedure and she would be free to leave. Not so. The procedure was, in fact, over two hours and restricted movement. With the correct information, Elizabeth could have prepared for the visit by bringing her ipod with audiobooks or music.

The second important piece of missing information was about the level of pain to expect. Not only would it allow her to prepare psychologically, she could have taken pain medication prior to arriving. Better yet, she could have been medicated on site with a contingency for additional medication if needed.

The third is being reassured prior to the treatment that every patient responds differently. According to Elizabeth, “This would have made me feel like it would be alright to stop the treatment when I felt I had had enough.”

Walking a mile in the patient’s shoes means anticipating for them and keeping them informed about what to expect. Every bit of information and reassurance helps as patients navigate through uncharted territory. Remember – although you (the health care professionals) do hundreds of procedures, your patients may only experience it once. Help them to feel prepared and empowered.

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Baird Consulting

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