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.”

I was given last rites.

But, somehow I came out of the coma, I recovered from the surgery, the reaction to the medication, picked up the pieces and went back to work in October instead of August.

My Representation Agreement and representative were absolutely invaluable to me. To have a living person speaking for me when I couldn’t, saved my brain, saved my life. I’m a bit familiar with the advance care directive and I don’t think it would have served me.

First, because I wouldn’t have been able to participate in making decisions. I could not have ticked boxes, said “yes” or “no”. Second, situations arose like the allergic reaction that could not be have been foreseen. My wishes were carried out because I had a person who knew me well and cared about me, and who provided information and strong direction in decision-making. A piece of paper would not have done this for me.

I cannot imagine attempting to outline care directives with a stranger who I would probably not see again – ticking boxes in a one-time discussion. I’d never have told them about “not cutting out bits of my brain.” It would not have come up. I would have lost part of my brain, and if I’d survived, what would my life look like now?

I look at Representation Agreements this way. We have a last will and testament regarding the disposition of our possessions should we die. A Representation Agreement gives responsibility of care to someone who cares about you, who knows you, who will speak for you when that’s needed. You update your will if you get more possessions. If the state of your health changes, you can update your Representation Agreement.

I’m so grateful that this legislation exists. I’m grateful to have had a representative with the courage and integrity that Lori has. And I’m grateful also to the medical system for keeping me alive and present today, so that I can talk to you about this.

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