Table 1.

Illustrative Examples of Communication-Related Events Reported.

Event Type  Sample quotes

Providers not listening (noted by 29 respondents) Something DID go wrong:  “I went to the doctor numerous times to present my worries but was always turned away because they said it was normal. After being in excruciating pain for weeks, they finally did a test on the bile in the line and found out that it was indeed a staph infection that needed treatment immediately.” Something ALMOST went wrong:  “I had given them my medical history and list of allergies, including antibiotic, which have a massively different effect on me than on others, ie, making an infection worse, or nearly putting me in a coma. I, again, when the doctor asked, told them I am allergic to antibiotics…The doctor acknowledged it, and still, as I left and was handed my Rx, when arriving to the pharmacy, I noticed that he had prescribed me Amoxicillin.”

Insufficient or delayed information giving (noted by 19 respondents) Something DID go wrong:  “When my grandmother was released from the hospital after having had a stroke, we weren’t instructed about the ways in which her medications were changed. So when she got home we weren’t sure about which meds she should continue, which she needed to order etc. It was a sloppy transition and was nerve-wracking for everyone.” Something ALMOST went wrong:  “My doctor was not clear on when I should return for checkups and as a result I waited too long to be able to adequately completely control my condition. I was left was a lot of pain.”

Poor interprofessional communication (noted by 14 respondents) Something DID go wrong:  “She told me that she would put a referral in at the hospital to contact me as soon as possible for surgery. Well, it has been a month and a half since my appointment and I have not heard from the hospital…I have a feeling the referral did not even go through.” Something ALMOST went wrong:  “Whenever I see a new doctor, I make sure to tell them I’m allergic to NSAID’s…I went to an emergency clinic with a bad migraine headache and told them my typical allergy. I saw the physician and he prescribed me an injection—I don’t remember the name of the drug, but it’s one that I know I cannot take because it’s a strong anti-inflammatory. The nurse came in to give me the shot, and my husband just happened to ask, ‘So that’s not an NSAID, right?’ She said it was a very powerful NSAID”

Lack of sensitivity, caring (noted by 9 respondents) Something DID go wrong:  “…When I woke up, I had a bruise from my crotch to my ankle where I had bled internally from the convulsion. No one came to apologize or explain what had happened and I never saw the cardiologist again. I feel like I was lucky to make it out alive from that one.” Something ALMOST went wrong:  “One of the most memorable things that stick out in my mind with this experience is that the doctor’s son was graduating the day my son was born, so in hindsight, I felt as though he was trying to rush my labor for his own convenience…”

Conflicting information given (noted by 3 respondents) Something DID go wrong:  “We got conflicting reports from the doctors who visited. One said the tumor was stage 4, another said 3, and one said while it was a 3, it was more on the 2 side. Stage 4 meant he had a year to live, stage 3 gave him 3 to 5 years and stage 2 would mean he had up to 9…” Something ALMOST went wrong:  “One doctor told us it’ll heal, not to worry. Another doctor told us that by not knowing this we may have caused a long time damage to the shoulder…”