She had a life-threatening condition yet waited for hours to get help at St. Joseph’s emergency department. Days later, she died

Melinda Moote reached out on social media to the strangers that came to her aid in the emergency department at St. Joseph's Healthcare.

I was hoping to thank some of the wonderful people," Melinda wrote in a Hamilton neighbourhood group on Jan. 11. I was the woman in the wheelchair literally dying, in and out of consciousness while throwing up. The triage nurses were overwhelmed and too busy to notice how dire the situation I was in. The fact that you were willing to come give me water, puke bags and trying to help me keep a bit of dignity has proved to me again why Hamilton folks are the best. I don't remember much from the weekend but I do remember what you did!"

The 40-year-old Burlington woman died on Jan. 16 - five days after posting this comment. She'd been admitted to the Charlton campus for what turned out to be a deadly relapse of a blood disorder called thrombotic thrombocytopenic purpura (TTP).

It has left her family troubled about the care she received - both in the emergency department and as a hospital patient.

I know it's a serious condition, but it's hard not to question whether, if her care was better, she would have had a better chance of surviving," said her sister Mandey Moote. There were some moments in the hospital that we could really see the cracks in the system. You try and be patient and you can see that a lot of people have the best intentions, but that it's falling apart at the same time."

Melinda raised the gaps in the health-care system herself in response to a comment on her social media post.

I'm hoping to add my voice so people really know how bad it is," she said. People aren't dying from mysterious illnesses, it's from lack of accessible preventable health care."

The post was written from her hospital bed in the critical care unit (CCU) after Melinda's family says she waited more than two-and-a-half hours on Jan. 6 to see a triage nurse - the first point of contact in an emergency room to prioritize patients.

The wait was five times longer than the ideal 30 minutes to triage despite Melinda being known to the hospital for having the rare and life-threatening blood disorder.

In the end, her family says it was an emergency room nurse - not triage - that noticed Melinda was in medical distress and heard her sister's pleas for help.

We want to express our sincere sympathy for the family, and understand their profound grief and loss," the hospital network said in a statement. We have reached out to the family to provide an opportunity to closely examine all points of care during their loved one's journey at St. Joe's. It's essential that we listen and learn from families."

Melinda tried to do what she could to streamline getting access to care when she suspected she was having a relapse of the disorder that causes clots to form in small blood vessels throughout the body, which can limit or block the flow of blood to organs. The increased clotting also uses up platelets that are needed to stop bleeding, which can lead to internal bleeding and other issues.

On that Jan. 6 morning, Melinda woke up to discover spots on her neck, which can be a sign of bleeding.

The relapse came after more than two years of remission. Melinda had been doing so well that she was looking to return to her job at L'Arche Hamilton, a charity that provides support to those with intellectual disabilities.

That was her calling," said her sister. It wasn't the best-paying job, but it was what she absolutely loved doing."

Almost the whole family was together on New Year's Eve for Melinda's 40th birthday and to toast her two years of remission.

It was a great celebration together," said Mandey. We were celebrating her health ... We were so happy."

Just six days later, Melinda was rushing to a lab to get blood work done to confirm her suspicions that TTP was back. She wanted to have the results in hand when she went to the hospital.

It's a very scary, urgent situation," said Mandey. She was really worried about wasting time in the ER."

She went to St. Joseph's because that is where she was diagnosed in April 2020. She had been pregnant for the first time and pregnancy can increase the risk of acquiring TTP. On top of the diagnosis, she lost the baby she had wanted so much.

She was the lover of children," said Mandey. She was everybody's babysitter."

Melinda got treatment at St. Joseph's and developed a long-term plan that included coming back to the Charlton campus if she relapsed.

She was told that she should really remain with St. Joe's, despite the fact that she was staying in Burlington," said Mandey. They understood protocol and the severity of the issue and her hematologist was in Hamilton."

But despite Melinda making it clear to triage when she arrived at the emergency room that her life was in danger, her family said she was told to take a number and wait her turn. She told her sister there were about 34 people in line ahead of her.

The triage is working with a deli meat number (system) and two maybe three nurses to get people to just the next step," Melinda said in a comment to her post. It's a broken system."

When Melinda stopped responding to her family's phone messages about one hour after she got to the emergency room, Mandey called the hospital to explain the situation and her worry.

The ER nurse said, I'm just going to warn you now, it's going to be a long time before I can get out there to look for her,'" said Mandey.

In the meantime, Melinda's partner rushed down to the emergency room to find her.

They dismissed him as well," said Mandey. She claims he was so vocal advocating for Melinda that the hospital asked him to leave.

The family found out later from Melinda that strangers in the emergency room were also trying to get the attention of triage and doing what they could to help her.

I was extremely close to dying and there weren't enough staff to even help me or the thirty people ahead of me in triage," she said in response to a comment on her post. It's not the nurses' fault but they're getting blamed."

Another sister went to the ER and the family says she found Melinda sitting in a wheelchair, leaning over a trash can vomiting blood and coming in and out of consciousness. Mandey says she was slurring her words and her lips were blue.

She immediately went to them (triage) and said, My sister is dying. You need to see her now,'" said Mandey. They kept just repeating over and over again, Take a number.' She just kept raising her voice ... speaking more loudly, trying to explain the condition."

Finally, an emergency room nurse heard her family's pleas for help and came to their aid more than two-and-half hours after Melinda arrived.

We understand the anguish people experience when they are feeling unwell and waiting to be seen by a triage nurse or physician in the emergency department," St. Joseph's said. Our triage process follows (Ministry of Health) standards, and we are working to refine it further."

The hospital can't provide details about this case because of patient confidentiality but spoke generally about the issues involved.

People arriving to the emergency department are seen as quickly as possible by our triage nurse and ideally that happens within 30 minutes," said the hospital. As volumes and acuity have been increasing we have periodically seen extended wait times for patients to be seen by triage. A new system will go live in the summer, which will allow us to more easily track the wait times of people before going to triage."

Melinda was admitted to the CCU from the emergency department. Her family says her kidneys were failing, but she seemed to be improving with dialysis and plasma treatments.

However, they describe a rapid decline once Melinda was moved to a clinical teaching unit on Jan. 13.

It started with staff forgetting to do her blood work on the day she was transferred, said Mandey. By the time the mistake was discovered, it was too late to get plasma treatment, putting her at risk for bleeding.

Her platelets dropped dramatically," said Mandey. It just felt like missing that opportunity to have the plasma exchange was a big gap in the treatment."

The next morning, there was blood in her urine. Mandey says the nurses knew so little about the blood disorder that they suggested Melinda could be menstruating.

She's like, No I'm not. This is a huge concern,'" said Mandey. My sister was such a patient and compassionate person ... and she's educating them basically on the condition that she has."

Despite plasma treatments, Melinda's platelet counts continued to fall on Jan. 15.

It was another very dramatic drop," said Mandey. What it basically meant is that despite the plasma exchanges, all of these platelets are being used up to create blood clots and you know the risk of her having a stroke, heart attack, kidney failure, all those things, just starts to increase dramatically."

On Jan. 16, a plasma treatment had to be stopped because Mandey says her sister was in severe pain and throwing up. She says a code blue was called, which means impending or actual cardiac arrest.

Afterward, Mandey says her sister was in and out of consciousness and expressing that she was in pain.

There was utter chaos," said Mandey. Nurses ... and doctors coming in, debating on where they were going to move her, how they would move her and whether they could find space - not doing anything for her for about five hours other than having these discussions."

Ultimately, a decision was made to move Melinda to the intensive care unit (ICU), said Mandey. But first a nurse took her for a computed tomography (CT) scan.

That was the last time we saw her alive," Mandey said.

The family waited together in the ICU, getting increasingly bleak updates that Melinda needed a tube inserted to help her breathe, that CPR was being performed and finally that she died.

It was shocking," said Mandey. When they moved her to the training unit (from the CCU), I had assumed they had done that because they felt she was in the clear."

St. Joseph's says where a patient is treated in the hospital can change based on the stability of their health.

The medical needs of patients are closely examined to determine which unit and service can provide the most comprehensive care," said St. Joseph's. Like most academic teaching hospitals, we operate multiple clinical teaching units (CTU) where fully-trained and skilled staff and physicians work with physician learners to provide quality care for all levels of patient care."

A code blue can happen anywhere in the hospital and staff are prepared to deal with that, said St. Joseph's.

Staff on all units are trained to manage these incidents, and teams have been established to respond to Code Blue calls," said the hospital network. These incidents can be difficult to witness because of the intensity, pace and numbers of staff involved."

Despite the knowledge and skill of the teams, St. Joseph's said unfortunately our efforts are not always enough."

Melinda's death has left a gaping hole in the close-knit west Mountain family. She was the second youngest of seven siblings who all live in Burlington, Brant or Hamilton.

We're pretty inseparable," said Mandey. We literally can't move from each other. We have a one hour or less commitment in terms of drive time."

The family already lost their mom to cancer and Mandey described their dad as completely gutted" over the death of his daughter.

In Melinda's obituary, her siblings described her as the best of us."

Not just the best of us but the best that humanity has to offer," said her obituary. Melinda made everyone feel special - she was the sunshine in every room. She lived a life of generosity, patience and love. She believed the most in everyone and was so incredibly thoughtful. If you asked for help, Melinda would always say, most definitely' ... Melinda never let us down."

Her sister says it was just like Melinda that during her hospital stay, her focus was on the overworked staff, thanking the strangers who helped her in the emergency department and showing appreciation to plasma donors.

All she ever talked about is how run off their feet the nurses are and how concerned she is about what's happening to nurses," said Mandey. She literally said to me when she got moved into the training unit, Maybe if some people can learn from working with me, that's an upside.'"

Her family is talking about Melinda's death to honour how she tried to bring attention to shortfalls in the health-care system during the last days of her life.

They're doing as much as they can with what they're provided with," Melinda said in response to a comment on her social media post.

She raised concern that years of hospital cost cutting was burning out the people who matter the most."

Just go sit in a ER on a Friday night to watch what's going on," she wrote in her last comment. It's terrifying!!"

Joanna Frketich is a health reporter at The Spectator. jfrketich@thespec.com