A year after their loved one died in hospital, the NS family struggles to understand what went wrong

Every time they walk past their 30-year-old daughter, Shavonne,'s bedroom in their Westville, N.S., home, Wesley and Sheila Lees feel heartbroken over her loss and the way she died.

The room is how she left it, with a beloved doll on her bed and posters of her favorite movie, Frozen.

“We know that nothing will bring her back. But we also know that she can be the person to make change happen,” says Sheila Lees.

The couple didn't realize how sick their daughter was when she told them she wasn't feeling well and had to go to the emergency room at nearby Aberdeen Regional Hospital in August 2023.

Unbeknownst to them, Shavonne, who had a physical and mental disability, had contracted sepsis, a life-threatening condition caused by the body's overreaction to an infection.

She died the next day, and now — more than a year later — her parents say they are still trying to understand what went wrong and what needs to change to prevent similar tragedies.

Lees said they arrived at the hospital in New Glasgow at 4:30 a.m. and her daughter spent nearly 16 hours in the emergency room. Shavonne was on a gurney in a room across from the nurses' station and connected to a heart monitor, said Lees, who added that it did not appear her daughter's illness could be fatal.

“We relied on the medical professionals. No one came in and out of the room and told us anything,” she said in a recent interview.

Shavonne was eventually transferred to intensive care, but died there on August 28, 2023.

Since then, Lees has spent hours sifting through her daughter's medical records to try to understand what happened, and has become even more frustrated after discovering what she sees as gaps in care and miscommunication among staff.

“We watched our daughter die. And we didn't know sepsis was taking over her body,” Lees said.

The family also expresses serious concerns about the way Shavonne was treated. They think she was discriminated against as a person with an intellectual disability.

“On the rare occasion when staff came into the room, they wouldn't even talk to Shavonne,” said her 25-year-old brother Austin, who was also by her side. “Not even something as simple as 'Hello, how are you?'”

The questions appeared to be directed at other family members, but she could have spoken for herself, he said.

“I think this is discrimination. It could be unconscious,” he said, adding that he still feels a mixture of anger and sadness.

Nova Scotia Health has completed a quality review of the case, which it has shared with the Lees family and offered its condolences.

“We would like to express how deeply we regret what Shavonne and your family have experienced during our care,” the May 31 letter said.

The review, led by health professionals, was conducted to understand what happened and find ways to make improvements, said a statement from Nova Scotia Health.

It makes seven recommendations, including a review of the care model and patient flow at Aberdeen Regional Hospital's emergency department, and providing continuing education as part of Nova Scotia Health's equity-based approach.

It also proposes introducing strategies to support the implementation of best-practice care for sepsis.

However, Sheila Lees, who has also filed a complaint with the College of Physicians and Surgeons of Nova Scotia, said she doesn't know what has changed.

She met with Tim Houston, the MLA for the area, in February, received a letter from the Secretary of Health and Human Services last October and has had a number of meetings with health officials.

Nova Scotia Health said it wants to work closely with the family and that “physicians and operational leaders have met and continue to meet regularly with the family to share updates, listen to their concerns and provide answers to their questions.”

The goal, the health authority said, is to “ensure they remain informed and engaged as we work together with the goal of improving patient care.”

“More check-ins for people” — Tim Houston

Houston described the situation on Wednesday as “incredibly tragic” and said he is aware there are ongoing discussions to understand exactly what happened.

The PC leader pointed to several measures taken in the field of emergency care since his party was elected in 2021.

“We've taken steps to have more people in the rooms to check people in and offer different things, that's evolving.”

Liberal Leader Zach Churchill said he was already aware of the case and believes the emergency response system is in crisis.

“Our emergency departments are failing. We are experiencing more emergency department closures than ever before. And I am very concerned that this is only going to get worse,” Churchill said.

Emergency care does not appear to be getting any better, according to NDP Leader Claudia Chender, who said the case highlights the need for major improvements in primary care. She pointed to an October report showing about 145,000 Nova Scotians are registered as needing a family practice.

“First, our hospitals are overcrowded in terms of our bed space, but second, there are simply too many people in emergency rooms and they are reporting sicker than ever. And it is clear to us that this is because there is no attachment to primary care. care,” Chender said.

'Fantastic' person who kept the family connected

Lees is unhappy with the province's response, and the family is determined to continue campaigning in honor of Shavonne, who they say was a “fantastic” person.

They describe her as the family secretary, who keeps everyone in touch with heart-warming text messages and voice messages.

Lees acknowledged there is an ongoing dialogue with health officials, but added she wants to see action. One step the family is asking for is signage in emergency rooms explaining what sepsis is so patients are more aware of it.

“I never want another family to experience that,” Lees said. 'I don't see that change. Fourteen months is a long time.'