Death by Prostate Biopsy
How an Oslo hairdresser changed medical practice in Norway and beyond after her father died from a transrectal biopsy
By Howard Wolinsky
On Tuesday, February 25, 2018, Roar Gulbrandsen, 68, a stonemason from Oslo, Norway, underwent a routine transrectal biopsy after pathologists detected three suspicious prostate lesions following surgery for an enlarged prostate.
The next day Gulbrandsen worked on a renovation job. During the course of the day, he had a headache and was unable to drive. One of his workers took him home. The same evening he complained of lower abdominal pain. He also developed double vision and lost his peripheral vision.
At 4 a.m. the next day, he couldn’t stand on his own and had difficulty speaking. He was hospitalized and deteriorated. He was transferred to a third hospital in as many days, where a neuroradiologist diagnosed a brain clot and surgically extracted it.
By the following Monday, the rugged outdoorsman had died. An arterial embolus was the official cause of death,
Agnes Gulbrandsen, Roar’s daughter, was baffled. The doctors rebuffed her questions about whether the biopsy could’ve played a role in his untimely death.
Agnes and Dr. Truls Bjerklund Johansen, her father’s urologist at the Oslo University Hospital, ultimately revealed what most likely happened: a silent sepsis that threw off a septic arterial embolism to the brain. The consistent pressure from Agnes and the medical detective work by Bjerklund Johansen led to an unlikely public debate in Norway on transrectal biopsies and the dangers of antibiotic resistance.
Agnes had been close to Roar. She had asked to accompany her father for the transrectal biopsy, but he put her off. “He didn’t want me to come. I think he was a bit embarrassed because I’m his daughter, and he wanted to go alone,” she said. “He told me: It’s a standard procedure that they do all the time. He was like, ‘Leave me alone. It’s not a big deal.’”
Indeed, the procedure appeared to be uneventful. Roar drove himself home. The next day he was back on the job, renovating a house. But he began developing symptoms the next day and was unable to drive.
At 4 a.m. the following morning, he called one of his sons. He couldn’t feel his legs and couldn’t stand up straight. An ambulance transported him to his local hospital which was Akershus University Hospital (AHUS).
Things deteriorated at AHUS. Roar’s breathing failed while he was being taken for some tests.
“We could see in the documents afterward that he couldn’t breathe and then they transferred him at night to The National Hospital, one of the campuses at Oslo University Hospital and then he got a blood clot in the brain,” Agnes said.
At The National Hospital, doctors found Roar had a brain clot and performed a procedure to remove it,
Jørgen Gomnæs, Agnes’s husband, said the doctors seemed to be “hung up on the clot.” He said the embolus was listed as the cause of death, and the neurosurgeons never once mentioned or accepted septic shock as the cause of death.
That might have been the end of it. But the death so soon after the biopsy gnawed at Agnes, 41, a fashion entrepreneur and owner of three salons in Oslo.
She wondered, as improbable as it might appear, whether her father’s death was connected to the transrectal biopsy.
Agnes said the neurosurgeon dismissed her inquiry and demeaned her. She said the family doctor resisted giving her Roar’s medical record.
“When you talk to these doctors, sometimes they sit on their high horse, and they look a little bit down at you as a young girl with long blond hair and as a hairdresser. Like they’re so much more educated than you and smarter than you,” said Agnes. “I could hear my father in a similar situation saying they are also just people. And what they have read does not make them any better or smarter than you.”
The following August, Agnes caught a break. She met with Dr. Bjerklund Johansen, who performed the transrectal biopsy on her father. The urologist had been thinking for years about the dangers of transrectal biopsies and poor management of antibiotics that could lead in the long run to huge antibiotic resistance problems.
Bjerklund Johansen was in a position to act as the long-time chair of a committee in the European Association of Urology on infections and infective complications in urology. He suspected that septic shock was to blame in Roar’s death. He said the brain embolism was caused by septic shock, the same mechanism seen now with COVID-19.
She was surprised to find that Bjerklund Johansen agreed there might be a connection between the dirty transrectal biopsy and the creation of deadly blood clots.
Bjerklund Johansen began probing the issue and together with physician-statistician Per‑Henrik Zahl applied several death codes in the Norwegian Patient Registry. They concluded that one Norwegian man in 1,000 who underwent a transrectal biopsy died from septic shock each year. That comes to 50 to 60 deaths per year in the country of 5 million.
Applying the same rate to the approximately 2 million transrectal biopsies per year in the U.S., Bjerklund Johansen estimates that 2,000 American men a year experience death by transrectal biopsy.
I asked a couple of American academic urologists about this. One said he was dubious because if that many men died per year, he expected that the malpractice lawyers would be organizing class action suits and advertising on TV or in Facebook to uncover cases. But another said he thought that death was possible and U.S. urologists should accept the number in lieu of a U.S. national patient registry. Recently, Bjerklund Johansen and colleagues confirmed in an international study that one in 1,000 men dies after transrectal biopsy.
Since 2018, he and Zahl have compiled a registry of complications related to transrectal biopsy. They found that a shocking 10% of men who had undergone transrectal biopsies in Norway were rehospitalized for infections within 30 days. You can’t see what you don’t look for.
Recently, he ran a randomized prospective study together with urologist Eduard Baco where half of the patients undergoing transperineal biopsies got antibiotic prophylaxis and the other half got none. Results have not yet been published, but the infection rate was negligible in both groups and as a result, they stopped using antibiotic prophylaxis before transperineal biopsies.
He and Agnes decided something needed to be done. Sunshine is the best anesthetic.
They brought the story to journalist Lene Skogstrøm at the Aftenposten, Norway’s national newspaper with more than 1.2 million readers. Bjerklund Johansen wrote an accompanying op-ed spelling out the problem.
The urologist called for major reforms, including a switch to transperineal biopsies which virtually prevent sepsis because biopsy needles go in through the “taint” (the area between the scrotum and the anal opening), thereby avoiding the filthy rectum. Also, he recommended hospital-wide courses on sepsis and how to prevent it throughout hospitals.
The risks of transrectal prostate biopsies and the related issue of poor stewardship of antibiotics resulted in a national scandal and debate.
Bjerklund Johansen got the inevitable pushback from urologists in Norway, who he said are typically set in their ways and reluctant to change.
But he said patient pressure and power had an impact on the urologists as men one-by-one refused to undergo transrectal biopsies and demanded the safer transperineal procedure.
The free market went to work. Urologists began to switch to perineal approaches when a large private hospital in Oslo adopted the transperineal approach. Bjerklund Johansen said all his critics now are on board with transperineal procedures. Only isolated rural areas in Norway still use transrectal biopsies, he said.
The experience in Norway and a movement of leading surgeons with what they call TRexit (transrectal exit) has led to the European Urological Association to make transperineal biopsies the top choice for prostate cancer patients.
The American Urological Association invited Bjerklund Johansen to present his research at its meeting in 2019. Again, Bjerklund Johnsen said he encountered resistance to change.
The AUA is in the midst of updating its guidelines and ought to consider recommending transperineal to save lives as well as costs of up to $750 million for rehospitalizations for infectious complications. The AUA is debating transrectal v. transperineal biopsies on September 11 at its annual meeting in Las Vegas.
Change is coming. I have beat on the topic of biopsies in this blog for years. I told my own urologist that men who undergo these transrectal biopsies were going to rebel unless changes were made. My doctor joined the TRexit a few weeks ago.
In the end, Agnes obtained the results of the biopsy. Roar had 2-millimeter Gleason 3+4 in a single core. “The finding would most likely not have had therapeutic consequences, as the patient could have been managed by active surveillance,” said Bjerklund Johansen.
Agnes, the mother of two young boys, said if the lives of men like her father are saved her father’s death will not have been in vain. “My father would always fight for rights. He was a very honest man. If something wasn’t right, he would try to fix it. In this case, I think he would be very happy if I helped other men, other grandfathers, other fathers, that come after him. It’s my duty to do it in his legacy, you know?”
Sign the petition to phaseout transrectal biopsies to save lives: http://chng.it/mcv6Ys4shV
Howard Wolinsky is a Chicago-based medical journalist. He has been nominated twice for the Pulitzer Prize and has won awards from the National Press Club, the Association of Health Care Journalists, the Chicago Headline Club’s Peter Lisagor Award (the “Chicago Pulitzer”), the American Public Health Association as the “best young health reporter in the U.S. (a long time ago), and the American Bar Association. He is a best-selling author. His new book is “Contain and Eliminate: The American Medical Association’s Conspiracy to Destroy Chiropractic.” (Get it at Containandeliminate.com) He has been on active surveillance for low-risk prostate cancer since 2010.