Gwen's Story

I’m Gwen Torgunrud and I have a Representation Agreement. In April 2003, I was diagnosed with a brain tumour.

To prepare for surgery, I thought I’d better get my life in order. Within three days of my diagnosis, I had a Representation Agreement in place and my representative appointed. In my first conversation with my representative Lori, I said, “and, by the way, they don’t get to cut out bits of my brain. I know they don’t need to, they don’t have to, don’t let them do that.” She said, “OK.” I don’t know why I said that, but I’m glad I did.

I didn’t really think I’d need the Representation Agreement because my tumour was pretty simple to get to and doctors said it presented no apparent problems for removal. I expected to be out of the hospital in under a week and back to work in about three months.

However, things went wrong – really wrong. I developed a rare allergic reaction to the medication prescribed before the surgery. I don’t have a conscious memory of the two days prior to surgery to about a week afterwards. By 10 o’clock on the morning of my surgery, I was in full respiratory arrest and being placed on life support. Lori, with the Representation Agreement in hand, was there watching over me. It was Lori who made hospital staff aware that I was not breathing, when my airways swelled shut.

The neurosurgeon rushed me into surgery and what should have been an open and shut case took much longer than expected due to massive swelling. They did get the tumour out, but they were unable to close my skull because of the swelling. They didn’t know what was causing the swelling or my other symptoms. Lori was an invaluable resource to the medical staff. She provided all the information they needed. She knew me well and provided any decisions that needed to be made. She made decisions she knew were according to my instructions, my specifications, my preferences, my wishes. She was speaking for me when I could not.

I remained in a deep coma for three days. The neurosurgeon called Lori in to discuss decisions that had to be made. My survival was in question. She was given two options: first, to cut out bits of my brain that ‘I wasn’t using much’ to accommodate the swelling and be able to close my skull. The second option was simply to close my skull and, at the rate the swelling was persisting, I’d be dead in a few hours. Lori didn’t hesitate. She said, “Close her skull and let her die. I promised her I wouldn’t let anyone cut out bits of her brain. That’s what you need to do, close her skull and let her die.”