A Patient’s Story: Family is waaaay more than a visitor

My brother Greg died on May 19, 2012. Since his death my family has been advocating for constructive, positive change in our health system hoping to prevent other families from going through the loss that we have (if interested see Healtharrows.ca). We have heard many stories and have had our own experiences that re-enforce our resolve to encourage improvement in the system in any way we can. One of these experiences is my own. It is difficult to sum up the whole journey in a post that is a reasonable length so I will just share a couple of moments that are related to family presence and the Better Together campaign.

Asking questions

Less than a month after we lost Greg I was staying with a cousin when I started to get a sharp pain in my side. When the pain hadn’t gone away overnight we decided to go see my family doctor. My doctor knew something was wrong as soon as she saw me walk in and suggested that I go to the Emergency Room, she suspected it was appendicitis. At the ER my cousin wasn’t allowed to stay with me – they told her they would let her know when she could come in. It is difficult to describe what I was feeling at that point but overwhelmed and scared is what comes to mind. They ran some tests, explained the results, said I needed an ultrasound and asked if I had any questions – I asked if my cousin could come in – which the doctor allowed at this point. He was immediately peppered by a series of questions and had to repeat a lot of the same information that he had just told me. As a nurse, my cousin better understood the results of the tests and what the numbers all actually meant, and though I am sure she was also worried, at that point she was better able to think of the right questions and what information we needed in order to understand the risks and the next steps. I needed her there, and though I am grateful that she was eventually let in, it would have been less stressful and a lot more efficient if she had been allowed to be at my side the whole time.

Sharing information

When I was waiting to go in for the appendectomy my dad was allowed to stay with me until they actually rolled me into the Operating Room. While we were waiting for the Surgeon, Resident came to talk to us and give us an update on how long it would be. The Resident also asked if anyone had talked to us about the mass in my bladder that was visible on the CT scan that I had earlier in the day. That was the first time anyone had mentioned it. I didn’t even know how to comprehend what he had just said. Dad was the one that told the rest of my family and was first to ask questions about next steps when I was out of surgery. It sounds weak but I honestly can’t imagine how hard it would have been to be coming out of surgery and have to share the news with my family (who had just lost my brother less than a month before) that the doctors thought I might have bladder cancer. I needed family there so they could hear firsthand what was happening and I wouldn’t have to try and remember it, repeat it and try to explain it.

Remembering & recording information

The stats that I have heard about a patient’s recollection of what instructions they are given are staggeringly low. 40-80% of information provided is immediately forgotten and half of the information that is recalled is incorrect. Any time my sister was in the room when I was receiving information she was diligently taking notes for me. She enabled me to focus on getting better, how I was feeling and I knew that absolutely everything else was taken care of.

Emotional support, comfort & remembering what is important

My last point is that there is nothing more valuable than just having family there. It was a healthy distraction and a good reminder of what is really important. I remember my nieces and nephews coming in to visit and how I was a bit worried it would be a traumatic experience and yet my nephew was just excited and jealous that I got to sleep in a bed on wheels.