Friday November 20, 2015

Falling through the cracks

Greg Price, as an adult, pictured in cowboy hat and in other family photos with his siblings and his father, David Price.

Greg Price, as an adult, pictured in cowboy hat and in other family photos with his siblings and his father, David Price. (Price family )

Listen to Full Episode 27:31

To fall through the cracks is to get lost, forgotten or neglected by the system.  Who doesn't have a story of falling between the cracks while trying to navigate a government bureaucracy, a bank or an insurance company?

It happens a lot in healthcare: The biopsy report not filed with the patient's chart.  The blood test not done because the lab never got the sample. But ,health care is in a class by itself because someone's life is at stake.

So it was with Greg Price -- who until the age of 31 - was a really healthy guy.  

Yet, Greg died after having surgery for testicular cancer in 2012.  It's considered one of the most treatable cancers. Greg's father, David Price, says the family was hopeful he would beat it. 

"When we had that first meeting with surgeon, the percentage was north of 85 or 90 per cent (survival)."  David tells Dr. Brian Goldman, on this week's White Coat, Black Art. 

David Price says that he believes the real culprit in his son's death was a system that treated him, but didn't care about him. 

"Well, treatment is something that you do. When you're completed your task, that's it, you're done. If it's a patient that's involved, it's somebody else's concern after that. Care of course is a continuum." 

He says in Greg's case, the ball was dropped over and over -- tests were not followed up on, doctors left their practice or went on vacation without notifying Greg, and even when requests were marked urgent, they took weeks to complete. 

"There was no collaboration or teamwork in the system to keep that care gong for Greg. It was a whole series of independent events... With this system, it seems like it's multiple failures are a domino effect."   - Greg's father, David Price.

After Greg died, the family tried to piece together what happened.

They got help from Health Quality Council of Alberta,. It's a provincial organization that measures and monitors Alberta's health care system for patient safety and quality.

Dr. Ward Flemons is the medical advisor to the council. He co-authored  a report into the death of Greg Price. He says that that the council identified several factors that led to Greg's death. Among them: 

-- Referrals to the various specialists involved in Greg's care took too long to book - in at least one case - because the specialist was out of town for an extended period.  

-- None of the specialists had a procedure in place to warn the patient or even the referring doctor how long it would take to get an appointment - if at all.

 -- The CT scan that Greg received was considered essential to confirming the cancer - yet no follow up appointment was made to review the scan and refer him to a specialist.  

 -- When Greg developed swelling in his legs following surgery - he was unable to reach the surgeon during normal business hours on a weekday.

He says a key recommendation was that the province give patients better access to their own health records. The council advised the province to set up a patient portal that would give them that access electronically.

But Flemons says the province still has "a long way to go" to achieve that. 

"I think it's a difficult priority because it comes with a fair amount of organizational risk and cost. And if you don't get it right, you get into a lot of controversy because it's so expensive.

"It's easier to build a hospital than to it is to build an electronic health record," he says.

"It's easier to build a hospital than it is to build an electronic health record." - Dr. Ward Flemons, Health Quality Council of ALberta 

Dr. Flemons says while there's been interest in the report, there has been little action.

He says the new NDP government has asked the council to review it's findings and report back on their progress.

"We're excited that we've been asked to do that and that it will once again help put the issues on the table for discussion and hopefully move the yardstick a ways forward," Flemons says. 

Meanwhile, the Price family continues to push for a better system, so others won't meet the fate their son did. 

Greg's sisters Teri and Joanna started a website - healtharrows.ca - to increase awareness and to provide an opportunity for people with stories similar to Greg's to connect.  

And earlier this year, the Price family won a prestigious award from the Canadian Patient Safety Institute  for fostering improvements to Alberta's health care system.