The painful search for a diagnosis in small NWT communities
Nurses in small NWT communities are the gateway to a decision-making process that can frustrate patients and, in their view, delay important treatment.
Christie Horesay first began experiencing pain in November 2021.
Before it began, she was as healthy and happy as she had been in years: her type 1 diabetes was under control, she was active in her community of Fort Simpson, and she enjoyed spending time with her partner, Bruce.
Within weeks, pain in her spine reached an unbearable intensity. She had difficulty sleeping and even getting out of bed.
Christine Hartman, a neighbour, met Christie through a Facebook marketplace deal in September last year. They struck up an easy friendship over swapped clothes and appliances.
“She was always a very happy, friendly person. And then in the middle of November, I ran into her in the store and even though she had her mask on, I could see in her eyes that something wasn’t right,” Hartman said.
Despite repeated visits to Fort Simpson’s health centre, Horesay says never received an answer to what was causing her pain — only more medication.
“I was getting really worried because I have a family history of cancer,” said Horesay. “But they told me I probably had a slipped disc and kept giving me different prescription painkillers.”
For months, Horesay’s condition deteriorated. She began to lose weight, dropping from 120 lb to 80. She and her partner, Bruce Dowdeswell, say they repeatedly asked for Horesay to be moved to a larger hospital in Edmonton or Yellowknife.
“Without a diagnosis, they didn’t want to send her in because they didn’t know what was wrong,” Dowdeswell said, recounting his understanding of conversations at the health centre. “I thought that was completely backwards. Like, if you don’t know what it is, you send her to a bigger hospital immediately.”
At times, Dowdeswell said, he had to carry Horesay to her appointments. Months passed.
“I don’t know if it’s just forgotten or that the paperwork gets lost,” he said.
Dowdeswell says he had experience of a similar delay, waiting three months for an ultrasound appointment after experiencing pain in his abdomen.
“Turns out, the referral was never sent in,” he said, “or at least, never received at the other end. So I had to start all over again at the bottom of the pile.
“There’s a million things that can go wrong, and I think Christie’s experienced them all at one point or another. God forbid she doesn’t have six months’ worth of cancer that she didn’t have to have in her body at the end of this.”
One night, Horesay broke down on her porch, telling Hartman she could no longer live like this.
“It had gotten to the point where I was having trouble walking to the grocery store, I was so tired,” Horesay said, describing drinking nutrition shakes to avoid having to make meals.
“But the worst part was just the pain.”
Hartman was appalled, and began emailing politicians and reporters. Nothing changed.
“I don’t know how this went on for seven months,” she said. “When you hear her talking, when you actually see her… I almost have to try and swallow it, and be strong, because it makes me want to cry to see someone suffering like that.”
Hartman, too, has her own story of treatment in Fort Simpson. After falling down the stairs at home, she had a purple and black hip and was in a lot of pain.
“I was in the health centre within 10 minutes but, when I got there, I was told ‘OK, well, you walked in here.’ I said to them, ‘Yeah, but that doesn’t mean anything. I’ve had friends who have broken hips and were still able to walk.’
“But she gave me some Tylenol 3s and said, ‘If it still hurts in six weeks, come back.’ And I was like, ‘Are you kidding me? What about an X-ray?'”
When the pain didn’t go away, Hartman returned and saw a different nurse.
“I had to go to Hay River in December three times, just for an X-Ray on my back and an ultrasound. That’s a 10-hour drive. So we’re there, we spend the night in a hotel, get a 10-minute X-ray and then turn around and come back… all for this simple procedure.”
For Horesay, the situation in Fort Simpson came to a head in June. In the clinic, she took off her shirt, hoping the sight of her ribs would help the nurse see how emaciated she had become.
“I told her to look at me, and asked, ‘Are you going to wait for me to be on my deathbed to get healthcare?’”
She was on a flight to Yellowknife’s Stanton Territorial Hospital the following day.
In May, health minister Julie Green addressed concerns about access to care and hospital treatment in a conversation with the CBC.
In that interview, she said decisions to escalate care are “at the discretion of the nursing staff.”
But a former nurse in a mid-sized NWT community, who asked for anonymity to discuss a previous employer, said nurses working in community health centres should not take the blame when patients aren’t happy about decisions being made.
“Why are nurses being put in these positions in the first place?” the former nurse asked.
“When you’re a nurse in the North, you’re constantly having to make decisions you don’t have the adequate training to make.”
David Maguire, communications manager for the NWT’s health authority, said nurses are given support to make those decisions.
“Anyone in the system who would be making a decision about patient movement would have the ability to consult with a provider in another community – either a physician in a regional hub that they are connected to, or via the MedResponse system, which would allow for advice and consultation to determine the correct course of action regarding treatment and movement of a patient depending on their needs,” Maguire said by email.
But the former nurse said more support is needed.
“We do have the ability to call physicians. But there isn’t a rule about when you have to call and, if you don’t have the right training, sometimes you’re not even sure about what kind of situation warrants taking that step. We need a better system in place.”
She says the current nursing shortage isn’t helping.
“When you’re understaffed, you’re going to implement a basic medical triage … and I think in a lot of places, that eats up a lot of your resources and a lot of your time. And what happens is that preventative care and public health go by the wayside.
“This is why there’s a huge syphilis outbreak in the NWT. This is why cancer rates are out of control. Because no one’s taking the time to do proper preventative care, regular screenings, running the proper diagnostic tests.”
In the North, treatable cancers such as colorectal, prostrate and breast cancer can be fatal due to limited testing. Cure rates for colorectal cancer are almost 90 percent when detected early but drop to 12 percent if detected in its later stages. In the NWT, colorectal cancer is the second leading cause of cancer death.
Horesay is still hoping that won’t be her story. After being admitted to Stanton Territorial Hospital in late June, her condition stabilized over several weeks and she was able to regain some weight.
As of late August, she’s still waiting on test results for a bone scan at a hospital in Edmonton. While she waits, she’s taking the opportunity to visit family on the west coast with Bruce.
“I’m having to rest a lot, and still in pain,” she said. “But it’s nice to be someplace that’s beautiful.”