Her epileptic husband died suddenly at home. B.C. coroners refused an autopsy

Anastassia Waddell won't ever know exactly what caused her husband's death. Her requests for an autopsy were denied by the B.C. Coroners Service.

Drew Madsen, her husband and partner of 27 years, had a seizureonMarch 11. After coming out of it, he told her he had a headache and wanted to take a nap.He never woke up.

He died in the early hours of March 12.

"He didn't make any noise," she recalled. "I knew he was gone, and I knew it was too late to do CPR because you can't CPR your way out of brain death."

Madsen is believed to have died of SUDEP, or sudden unexpected death in epilepsy. There's no known cause for SUDEP,and the body of research is limited, with many labs seeking brain donations from deceased patients in hopes of advancing what is known about it.

Waddell wanted to donateMadsen's brain toresearch. She says she tried to co-ordinate the donationin the hours following his death, but requests for an autopsyso tissue could be removed and sent to a labwere eventually denied by the B.C. Coroners Service (BCCS).

"I could not understand why they would say no to that," shesaid. "It's a fatal medical event that bears research, and the idea of them just flat out refusing to fund an autopsy at all seems insane to me."

B.C. has one of the lowest autopsy rates in the country. Its declining autopsy numbers have drawn heavycriticism from pathologistswho say the province could be missing out on critical public health information while families are left without answers as to how their loved ones have died.

The coronersservice has previously said that mounting overdose deaths affect autopsy rate statistics in B.C. as thevast majority of overdose deaths don't receive an autopsy.

The BCCS would not comment on Madsen's death as its still being investigated, but in an emailed statement itsaid medically related deaths in homes don't meet its investigative mandate.

Not all deaths qualify for an autopsy under the Coroners Act, although autopsies for unknown medical deaths can be requested by families, according to HealthLink B.C. The BCCS said those autopsies wouldn't fall within its jurisdiction.

Drew's story

Madsenwas diagnosed with epilepsy when he was 24. Waddell says they struggled to navigate through B.C.'s health-care system as doctors failed to identify exactly what part of his brain was causing his seizures.

"It was just MRIs and CT scans and a constant readjustment to his medication. He was on over 20 different medications. Nothing seemed to work, and as the years went by, his seizures just kept getting worse," said Waddell.

However, during a stay at the Seizure Investigation Unit atVancouver General Hospital, doctors were able to pinpoint and trace the issue to his temporal lobe. A follow-up scan at a centre in Victoria was able to isolatethe problem area. Madsen was a candidate for brain surgery.

"They told us it was something they could operate on, and he had a really good chance of being seizure-free for the rest of his life," said Waddell.

But on March 11, he had a seizure. Once he was lucid, Waddellgave him his medication, as she usually did.

"He told me he had a really bad headache behind his left eye, which is what happened a lot when he had cluster seizures," she said. "He told me that he loved me, and then he went to sleep."

Waddell says she went to wake him up for dinner, but he wanted to keep napping. Later that night, she went back into the bedroom to give him his medication.

"When I went in to give him his bedtime dose, he was already dead," she said.

Autopsy denied

Waddell said she called Madsen's specialist moments after she discovered he was dead, who advised her to request an investigative autopsy so his tissue samples could be sent to the North AmericanSUDEP Registry. Waddell says the specialist faxed an autopsy request to the hospital that day.

Shesaid she alsorequested the autopsy of the coronerwho visited her home, as well as a coroner at the hospital,who then told her the request had to come in directly from his family doctor. After some back and forth with the doctor's office, Waddell saidthe request was sent onMarch 22.

She says she was lateradvised by a funeral director who was in contact with the Nanaimo Regional General Hospital that an autopsy would be done on March 27. However,she said on March 28, her family doctor told her that the coroner's service deemed the autopsy unnecessary.

While it didn't comment on Waddell's case specifically, the BCCS said it considers SUDEP a natural cause of death.

"Instances in which the decedent dies at home and is under the care of a physician or nurse practitioner do not meet the reporting criteria for a coroner's investigation," wrote BCCS spokesperson Ryan Panton in an emailed statement.

The BCCSonly donatestissue samples from autopsies if an autopsy was already being done for investigative purposes.

Waddellbelieves since her husband's death was sudden and unexpected, it should have beeninvestigated.

"I haven't felt such rage in a long time," she said. "It feels like a giant gaping hole in our system that makes no sense to me."

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Waddellwrote to Mike Farnworth, the minister responsible for the B.C. Coroners Service, outlining what she called a systemic failure. Farnworth has since replied.

"Please accept my sincere condolences for your loss. I have taken the issues you raised in your letter to BC Coroners Service Senior Leadership," he wrote to her in an email shared with CBC News.

Waddell is expected to meet with coroners service leaders on June 19.

Low autopsy rate

Waddell'sfrustrations with the BCCS come as the service's autopsy rate has dropped to a 30-year low. A CBC News analysis foundB.C.'s autopsy rate has declined steadily from 22 per cent of deaths in 1991 to 3.2 per cent in 2022 and sits just above Quebec, which has the lowestrate for provinces with a population of more than amillion people.

The province has recorded an increase in annual deaths over that time but also a decrease in total autopsies. More than 5,000 autopsies were performed in 1991, but the total steadily declined and has hovered between 1,000 to 2,000 since 2012.

In B.C., not all deaths require investigation. However, the BCCS is required to investigate all unnatural, sudden, unexpected, unexplained or unattended deaths.

For the deaths it iscalled to investigate, ithas seen its autopsy rate drop from 50 per cent in 2010 to 29 per cent in 2023, it says.

The servicepoints to the province's mounting overdose deaths, which is higher than in most other provinces, for driving down its overallautopsy rate, according to a statement it sent to CBC News in March.

"Not all deaths in B.C. meet the reporting criteria outlined in theCoroners Actfor a coroner's investigation, and our agency does not have jurisdiction to investigate deaths that do not meet our mandate," wrote spokesperson Ryan Panton at the time.

Still, a number of provinces outperform B.C. inboth autopsy rates and total number of autopsies performed, most notably Alberta, which, despite having a smaller population and fewer total deaths, recorded3,421 autopsies in 2022 nearly doubleB.C.'s total.

Unlike in many other provinces, in B.C., coroners decide whether or not a death warrants an autopsy.However, coroners are not required to have medical degrees. According to the BCCS, the preferred background for coroners"is previous education and experience in legal, medical or investigative fields."

Barriers to SUDEP research

According to the U.S.-based Epilepsy Foundation, there is no known cause of SUDEP. TheNew York-based North AmericanSUDEP Registry aims to collect tissue from across the continent with the goal of advancing research and preventing future deaths.

"We don't understand exactly what happens, but we think about it as the brain shutting down after seizure," saidDr. Orrin Devinsky, a neurologist at New York University.

"We need to do research. We need to understand what's different about people who have died of SUDEP. Are there clues we can get from brain tissue ... that can tell us more about what the mechanism is, and hopefully how to prevent it."

Devinsky, aprincipal investigator at the registry, says coroners and medical examiners often pose the biggest barriers to receiving tissue donations.

"If the autopsy is not performed for religious reasons, or because the medical examiner or coroner's service is just too busywith the drug epidemic, many of them just don't have capacity, we often don't get the information of even basic findings... we often don't get the information as to evenbasic findings on why the person even had epilepsy," said Devinsky.

"Did they have a tumour? Did they have an injury, scar tissue? It's a problem, and then if we don't have autopsies, it's hard for us to be sure they had SUDEP."

Devinsky said he expects many coroner's and medical examiner offices are likely doing what they can with limited resources or funding but is also sympathetic to families who can't get autopsies done for loved ones.

"If it was my family member, and I wanted to support research to hopefully prevent someone else from dying ... I'd be quite frustrated," he said.

Frustrations that Waddell is living through.

"It breaks my heart to think about it because I'm sure I'm not the first, and I know I won't be the last." Drew's brain would have been invaluable."

The international SUDEP registry asks family members who are looking to donate tissue to contact them.