Canada needs better data on drug users with overdose-induced brain damage, doctors say

Dayton Wilson's drug-taking routine ended when he overdosed on heroin laced with fentanyl, but being able to walk and talk normally are also part of his past as he struggles with brain damage from a drug linked to thousands of deaths.

Wilson, 24, used illicit drugs for the last time in August 2016 on Vancouver's Downtown Eastside, according to his mother, but he doesn't remember anything about the day he was taken to hospital.

It was the first of two facilities where he would spend three months learning to take a few steps and utter some words.

Lack of comprehensive data

The latest figures available from the Public Health Agency of Canada say over 9,000 people fatally overdosed across the country between January 2016 and June 2018. British Columbia's coroners service recorded nearly a third of those deaths.

But there are no comprehensive statistics for people who have survived the brain-damaging effects of opioids. Doctors say that information is imperative to understand the magnitude of the "forgotten" victims of the opioid crisis and to provide them with care and resources so they can become as functional as possible.

I don't remember this, but I wasn't breathing for about five minutes.- Dayton Wilson

More than two years after speech, physical and occupational therapy, Wilson speaks haltingly and is difficult to understand. 

"I don't remember this, but I wasn't breathing for about five minutes," he said of the length of time his brain is believed to have been deprived of oxygen.

"Balance is kind of hard for me now," he said, adding he sometimes falls backwards and has hit his head.

Wilson said he started experimenting with drugs at age 15 before becoming addicted to heroin two years later. The brain damage he experienced at age 21 has helped him understand the power and life-changing effects of his addiction.

"I really like the person it's made me," he said of his ordeal. "I just don't like what it's done to me."

The impact of the final overdose was tough on the family.

"One thing I hear a lot is, 'At least you still have him.' A lot of the times, I'm like, 'Well, actually, no, I don't. I have a version of him,'" WIlson said.

'It's embarrassing'

Dr. Adam Peets, a physician in the intensive care unit at St. Paul's Hospital, where Wilson was initially treated, said brain cells can be affected in as little as 30 seconds after someone overdoses and the level of damage can vary from mild to severe.

An estimated 25 to 33 per cent of patients are admitted to ICU because of complications from increasingly stronger drugs such as fentanyl and carfentanil but there is currently no way to adequately collect that information, Peets said.

Electronic health records include a patient's diagnosis at admission, he said.

But some of those people may be diagnosed with shock or something vague in an emergency room and a brain injury would be determined later through later lab tests, which he said are recorded on a separate system.

"It's embarrassing, quite frankly," Peets said of the lack of data on overdose-induced brain injuries, which he would like to see tracked nationally. "It's something that the whole health-care system needs to do a better job on."

Without data, it's impossible to gauge the resources being used in hospitals or how resources in the community could best be utilized, Peets said.

"How can we adjust the way we do business without having the best data to help drive those decisions, like staffing or going to the government and saying, 'Look how many patients are overdosing and having chronic brain injury. We need to do more primary prevention and secondary prevention or fund post-discharge rehab.'

Multiple record systems used in B.C.

St. Paul's will be among hospitals in the Vancouver area to roll out a new electronic health records management system in 2019 to better collect data but it won't be streamlined across the province, where multiple systems are being used, he said.

Dr. Patricia Daly, chief medical health officer of Vancouver Coastal Health, called the lack of data on overdose-induced brain injuries "tragic" because neither patients nor their families get the support they need.

"We focus on deaths but we forget that there's another group of people who have been negatively impacted, some of them severely."

Nicholas Gnidziejko, manager of clinical administrative databases operations for the Canadian Institute for Health Information, said national statistics on brain damage related to the overdose crisis would require developing a set of standards to collect the data in a consistent and comprehensive way but there is no such system in any province.