Behchokǫ̀ family says cancer went undetected despite multiple visits to health centre, Stanton hospital

Be it through sheer wit or flattering imitation, Tammy Steinwand says, her mother Ernestine loved making people laugh. 

She liked spending one-on-one time with her grandchildren and doing puzzles. She also had a passion for teaching her language, Tłįchǫ Yati. 

In July, Ernestine died from uterine cancer, which her family said went undetected despite multiple visits to the health centre in Behchokǫ, N.W.T.,̀ and Stanton Territorial Hospital in Yellowknife.

The family says they only learned of Ernestine's cancer after they drove to Edmonton, at their own expense, to get her care.

'We have to take her'

Tammy said her mother started having pain "on and off" in the side of her abdomen and calf in February.

Over the following months, Tammy said, her mother made multiple trips to the health centre in Behchokǫ̀. Meanwhile, her pain grew worse. 

On June 2, Tammy's daughter Tyanna brought Ernestine to the emergency department at Stanton hospital. Tyanna said they were at the hospital for nearly 10 hours. Most of that time was spent waiting. 

Tyanna said the doctor identified that Ernestine's liver test results were abnormal, that she had a high white blood cell count, and needed further examination. 

On June 15, Tammy said Ernestine called her at work because she was in pain. 

"My mom doesn't call me during work hours unless it's really important," said Tammy.

She said she brought her mother to the ER again. That visit resulted in an ultrasound on Ernestine's leg, which ruled out a blood clot. 

Ernestine had another ultrasound scheduled for a few days later, on June 19.

While waiting at the hospital that day, Tammy said her mother got a call from the Behchokǫ̀ health centre telling her the appointment had been cancelled. They decided to go to the emergency department because Ernestine was still in pain. 

Tammy said they waited about an hour and a half in emergency before her mother decided she wanted to go home. 

Sara Nash is the executive director of health and social services for the Tłįchǫ Community Services Agency (TCSA), which runs the Behchokǫ̀ health centre. 

She said the TCSA would not comment on specific cases, to protect patient information. 

Nash said the agency encourages residents to bring their concerns to TCSA. People can also get support through the Northwest Territories Health and Social Services Authority's (NTHSSA) office of client experience. 

Andrew Wind, a spokesperson for the territory's department of Health and Social Services, could also not comment on Ernestine's case. 

"If we become aware of concerns by way of a third party — such as through the media — our quality and risk team will attempt to reach out to individuals if they can be identified to undertake a review," Wind said via email. 

On June 20, Tammy said her mother told her she'd fallen that morning. Ernestine's pain was so bad that she couldn't make it to the washroom by herself. 

"That's when I called my brother and I said, 'Mom needs to go, needs better care. We have to take her to Edmonton," said Tammy. "We talked about it amongst ourselves. Then I asked her if she'd be up for that long drive and she said 'OK.'" 

They took off that night for the University of Alberta Hospital in Edmonton, and arrived about 9 a.m. on June 21.  

Tammy said doctors started doing tests immediately. That testing lasted three days and ultimately resulted in Ernestine being diagnosed with stage-four uterine cancer. By then, Tammy said, the cancer had spread to her stomach and lymph nodes in her abdomen. 

Her mother started radiation treatment, but decided to stop after two sessions. 

Tammy recalls her mother telling her, "I can't think clearly. It's like, I'm not all there. I don't like that feeling. And I said, 'Mom, it's totally up to you. You do what you feel is best for you.'" 

With Ernestine no longer going through radiation, the family wanted to bring her home to Behchokǫ̀ through medical travel. 

Tammy said they were denied medical travel benefits because they drove to Edmonton on their own.

Ernestine died in Edmonton on July 9. 

"I just wanted my mom to be home so that extended family could be with her and all of her friends," said Tammy. "But she never had that. That's the part that really upsets me."

Family questions medical travel policy

Tammy said she intends to file a formal complaint with the NTHSSA. 

"I think when people are in these types of positions that make decisions, you owe that to the people in really trying to be there and help them and support them," she said. "And having in place mechanisms to ensure that there's constant improvement." 

The territory's medical travel policy states that "when the nearest centre is in the Northwest Territories and the eligible person chooses to travel to another centre outside the N.W.T., no medical travel benefits are provided." 

Having travel originate in the territory is to "ensure that required valid medical referrals and prior approvals for travel are in place," said Wind. 

The policy does have exceptions for travel originating outside of the N.W.T., but to be eligible, a patient needs to meet specific criteria and have prior approval. 

"At this time, there are no considerations being made to provide benefits in situations outside the scope of the policy," said Wind. 

Tammy said the family did not contact medical travel prior to leaving for Alberta because the situation felt too urgent. 

"We did it because she was in and out of the Behchokǫ̀ health centre and the hospital four times in six days," she said. 

Tammy also questioned the N.W.T.'s reliance on out-of-territory medical services, including for some routine procedures. 

"All this money that they're spending on medical travel … Why can't all that be invested here into proper equipment and whatever else that they need to do the testing here?" 

Tyanna, Ernestine's granddaughter, said she wished her grandmother had gotten her diagnosis sooner. 

"I don't understand how nobody knew she had stage-four cancer until she was brought to Edmonton," she said.

Tyanna said her grandmother wanted to return home, to spend her final days with family and friends, but that the N.W.T. government wouldn't pay for her travel back to the territory.

David Maguire, spokesperson for the NTHSSA, said the health authority does have a program to help pay for funeral expenses if a family can't afford to do so, and that may include transportation of a body. He said NTHSSA would also help return a body if someone dies while on medical travel. 

Maguire said he could not confirm whether NTHSSA helped the Steinwand family in Ernestine's case. 

Tammy says the costs of having Ernestine's body returned were covered, but she is not sure by whom.