Theresa Malloy-Miller and her husband Tim, walked out of the hospital into the bright sunny January morning in 2003 holding a little wooden box containing their 17 year-old son Daniel's belongings.
It didn't make sense. How could their healthy teen go from what looked like flu on Saturday to dying on Thursday?
"We think he had myocarditis," the senior attending physician said before they left the hospital.
A heart infection?
No one had mentioned that when they brought Daniel to the ER on Monday and again on Wednesday. They'd heard dehydration. Hepatitis. Enteritis. Yes, Daniel's heart rate was really high at 140 beats a minute. His blood pressure was checked several times.
When he was admitted to the paediatric inpatient floor late Wednesday night an exhausted Daniel told his parents to go home so he could sleep. They did, assured by hospital staff that Daniel would be fine.
Until the Miller's phone rang a few hours later.
"It was the hospital. The nurse said Daniel was moved to the intensive care unit because there's better equipment to help with his breathing. She said don't rush, he's fine," says Theresa.
They raced to the hospital, hurried to the intensive care unit and were met by a resident doctor who said, "It doesn't look good." They saw staff trying to resuscitate Daniel.
"My God, what's happened?" yelled Theresa, "Daniel, you have to come through this!"
"Then they took us away and that was it. He was just gone. It was like someone just ripped our insides out and threw them on the floor. It was just done," Theresa says.
Except for the questions.
"What happened? Why was he gone? We knew we couldn't get him back but we thought we could help make sure that this wouldn't happen again," says Theresa.
The couple's ongoing search for answers led to the first patient safety conference in London. It has also helped their local hospital introduce a patient quality council which Theresa has been asked to join as the patient representative.
The Millers local hospital has also standardized their blood pressure machines, reviewed sedation guidelines, added a module about myocarditis to review with medical students, residents, nursing students and staff and created a rapid response team incorporating respectful communication between team members.
Daniel Miller completed his application to Waterloo University a month before he fell ill. He wanted to study biochemistry and hang out with his three-years-older brother Ben who was studying physics there. Both were confident Daniel's 90 per cent school average would get him in.
Daniel played competitive hockey, lacrosse, soccer and electric guitar. When he finally convinced his parents to let him get drums, a new band practiced in the Miller basement.
"He was a normal, healthy, teenager. Saturday he looked like he had the flu. Sunday he was really sick, throwing up every 45 minutes and not getting better. Monday he was sicker than we had ever seen him," Theresa recalls.
She called Telehealth. They asked when Daniel had last voided. He gave a typical teen 'not in a while ' answer. Telehealth said he needs to be seen. The Millers took him to the Emergency Room.
ER staff thought he could be dehydrated. They did blood work. Said he might have enteritis (inflammation of the small intestine). Daniel's unusually high 140-beat heart rate prompted the ER physician to recheck it, but then attributed it as part of the dehydration. Daniel was given IV fluids, told he could go home as soon as he peed.
Daniel continued vomiting. No one came back about the blood work. Daniel got three and a half liters of IV fluid. He went to the bathroom. Three hours after being admitted he was sent home, still weak, still vomiting. The Millers learned later, from Daniel’s hospital file, that three of his five blood-work results were in the abnormal range.
The next day was worse. Daniel's breathing started to get really unusual. He was up all night Tuesday. Another call to Telehealth the next morning. A return to the ER.
"The nurse at the triage desk saw that he had been there Monday and said he might just have to wait this out. I felt stupid for bringing him back," says Theresa.
The attending physician saw Daniel, did more blood work, and said it was hepatitis. He asked Daniel if he had any pain. Daniel pointed to the centre of his chest. The doctor asked what about down here and Daniel said ' well maybe.'
That was taken as liver pain. They did more blood work, gave Daniel more IV. A medical student came by and asked Daniel if he had gained weight in the last couple of days. A tired Daniel shot back that he'd been throwing up for days. How could he gain weight?
Later, Daniel's hospital file showed that he had gained three and a half pounds from Monday to Wednesday. He had voided only 100 ml of the three and a half litres of IV fluid. He was retaining most of the fluid he was given. His blood pressure was going up and down, but staff thought it was variations in the equipment.
ICU records showed that a nurse had twice questioned the resident about sedating Daniel as they didn't have a detectable blood pressure. Three minutes after the sedation, Daniel went into cardiac arrest.
When the Ontario Paediatric Death Review Committee reviewed Daniel's case, it was determined the ICU resident hadn't followed hospital guidelines, sedation guidelines nor had he contacted his attendant physician. The report questioned the support given to residents.
It took four years and a change in hospital administration before the Millers received an apology. Theresa:
"It was critical for us to hear. It gives meaning to Daniel’s story. The apology is as important for the healthcare provider as it is for the family.”
"It comes back to respectful communication. We were asking lots of questions but there didn’t seem to be a system ready to listen to the family. As we worked through the reports, I got that sense that nurses weren’t being listened to. The medical student who asked about weight gain didn't seem to be heard either.
"There has to be a system in health care that supports everyone to feel respected and to have the confidence to communicate what needs to be communicated."
The story of how Theresa continued to advocate after Daniel’s death shows the importance of Patients for Patient Safety Canada.
Patients for Patient Safety Canada is a patient led program of the Canadian Patient Safety Institute. Patients for Patient Safety Canada works to ensure that healthcare organizations and systems include the patient and family perspective when making decisions and planning safety and quality improvement initiatives.