When a medical specialist walked into Bronte Higham’s hospital room to bluntly tell him his chemotherapy doses were halved by mistake, he was left reeling.
“I was sitting on the end of my hospital bed after the third lot of chemo thinking I could stay at home for a while now when the specialist comes in and says, ‘I’ve got some bad news for you — we’ve underdosed you on the second and third lots.’ That was brilliant,” Higham says wryly.
“You’re left sitting on the bed by yourself looking out the window thinking, ‘Bloody hell!’ You think, ‘I may as well jump out the window if I could open it.’ ”
Higham, 68, is speaking publicly for the first time about an ordeal with the South Australian health system that continues to cause great distress to himself, his family and other affected cancer patients and their loved ones.
As a government-ordered review found, “the effect that this event has had on families cannot be underestimated and in some cases may be somewhat more significant than to the patient”.
The chemotherapy dosing scandal has rocked the South Australian government, which is fending off calls for parliamentary and judicial inquiries as it conducts an internal Health Department inquiry.
Last month it referred eight clinicians to the national regulator for investigation following a damning independent review.
Ten seriously ill cancer patients at Adelaide’s two major hospitals had their hopes for a recovery compromised because of the simplest of mistakes — a typographical error halved their chemotherapy dose. At least two have since relapsed and died.
The patients, with acute myeloid leukaemia, were admitted to the Royal Adelaide Hospital and Flinders Medical Centre in 2014 for intensive chemotherapy — but between July 2014 and January last year they received only half the dose recommended for optimal treatment.
The dosing error affected the second and third rounds of chemotherapy given to new patients diagnosed with a potentially fatal cancer that attacks the blood and bone marrow.
Half the recommended amount of chemotherapy — one dose a day instead of two — was wrongly entered into the internal system that stores treatment protocols and that doctors and pharmacists rely on.
On January 19 last year, the error came to the attention of the RAH. A senior clinician, using her clinical knowledge, wrote a script for the correct dose and sent it to the pharmacy.
The pharmacist, aware of previously prescribed doses, contacted the clinician to inform her that she had ordered twice the recommended amount. The error was revealed.
The following day, a group email notified of a dosage change but did not highlight that the reason related to the identification of the cytarabine dosage error.
The pharmacist was told not to officially log the incident “as it was being dealt with”.
Two days later, on January 22, Andrew Knox, a 67-year-old former advertising agency owner and industrial advocate, was admitted to Flinders Medical Centre. That hospital, still unaware of the error, gave him incorrect doses.
It was not until January 30 that Flinders became aware of the mistake, and only because an RAH pharmacist mentioned the incorrect dosing to a consultant working at Flinders.
One of the Flinders patients found out on February 5, his wife lodged a formal complaint and the matter escalated.
It took months before all 10 affected patients received “open disclosure”.
A letter of apology, described by an independent review panel as “lacking in warmth and empathy”, was only sent to patients by Flinders in May — four months after the error was first discovered, adding to patients’ distress.
One patient told investigators that, “the knowledge that my treatment could and should have been corrected for that second consolidation cycle will haunt my family forever should I not survive”.
This is now the reality for the family of Chris McRae, a civil celebrant and former businessman, who relapsed after he was underdosed at RAH. He died last November 22, aged 67.
A few months before his death, the hospital offered McRae $5000 compensation, along with a confidentiality agreement. The family’s final settlement from the RAH was $9000 each for McRae and his wife.
One of his three children, Rebecca Emery, tells The Australian that the Australian Health Practitioner Regulation Agency investigation into eight clinicians must be fast-tracked after a letter from the regulator advised, “the investigation may take between six and 12 months although more time may be needed”.
“Six to 12 months and possibly longer is an excessive amount of time given that they should already have most of the information that they need,” Emery says. “And if they don’t, why not?
“It should be fast-tracked to ensure this does not happen to other patients. Also, for those patients that are still fighting this disease and might be in remission or are still undergoing treatment, time is not on these people’s sides. They might not be around by the time the investigation is complete. For us, we want answers. We are in favour of a parliamentary and a judicial inquiry as well.”
Emery shares the view of affected patients, including Knox and Higham, that the case involved a cover-up.
“We were told by a junior doctor at the time of the mistake, left in a waiting room for 25 minutes without any explanation and they were certainly very defensive about the mistake — there was a huge delay; the discovery was made in January and we weren’t informed until March that there’d been an error,” Emery says.
“At the very same appointment they told dad that they feared he had relapsed.
“We are forever going to be wondering if we had’ve been told in January, could there have been a different course of action, as once he’d relapsed his options were limited. It just does not sit right with us at all.”
Higham and Knox have many lingering questions. They formed a strong bond through their ordeal, sharing neighbouring rooms at Flinders Medical Centre as they battled acute myeloid leukaemia.
While Knox emerged as the public face of the scandal when the media exposed it in August — he has met Health Minister Jack Snelling, been named in the parliament and held a media conference — Higham and others have remained silent until now.
A former Commonwealth Bank employee who traded the office for a lawn mowing round before retiring, Higham, like Knox, is in induced remission but still suffers physical problems from the chemotherapy.
“I’ve had abscesses through the chemo. There were two lots of abscesses they had to operate on, and whether it was because of the double dose that I needed because of the underdosing that created the second problem is hard to say,” he says.
“The whole thing has hit my family harder than me. You could accept it better if these errors weren’t made.
“Andrew (Knox) is no fool and he thinks there’s been a big cover-up. I share those concerns, for sure.”
His wife Ricki says: “Everything seemed wrong from the beginning ... the way things happened.”
In August, after the bungle was revealed by the media, the government established a six-person independent review panel led by Villis Marshall, chairman of the Australian Commission on Safety and Quality in Healthcare.
The panel found the underdosing was caused by a series of significant clinical governance failures at the RAH haematology unit and that certain clinical staff did not comply with SA Health incident management and open disclosure policies, including not conducting timely and appropriate open disclosure with patients.
SA Health accepted four recommendations from the review and the department is conducting an internal investigation.
“The SA Health internal investigation is still under way and my advice is that it’ll be finalised in the coming months,” Snelling says.
Higham says those responsible should admit they made an error.
“If there has been a cover-up, it needs to be exposed, and those people should be held responsible,” he says.
Knox maintains that when the mistake was discovered, it was “covered up” and the RAH failed to alert other hospitals.
“I think they’ve potentially killed me,” he says. “I know that my best chance of survival was unquestionably compromised. No one will be able to convince my family otherwise.”
Knox wants a judicial inquiry to determine what really happened.
“The reality is if the AHPRA investigation takes even 12 months to complete, then five of us are expected not to be here. So unless there is a judicial inquiry, we won’t get to the bottom of it,” he says.
An AHPRA spokeswoman says the investigation into the clinicians’ conduct began when the regulator was notified by SA Health and “every effort” will be made to reduce the six to 12-month time frame.
“It (the investigation) is being fast-tracked,” the spokeswoman says.
Snelling has told the parliament that while he was “quite comfortable” with a parliamentary or judicial inquiry into the chemotherapy bungle, such an inquiry should be delayed so as not to compromise investigations under way by SA Health or AHPRA.
“Mr Knox has a different opinion to that, and I respect that,” Snelling says.
“Mr Knox has been through a terrible ordeal for which I have met with him and personally apologised to him for what he has been put through. However, I respectfully disagree with him on that particular matter.”
The minister does, however, share Knox’s anger.
“This has been a serious failure in clinical governance,” Snelling says. “I am angry and frustrated by the fact that systems put in place to protect patients have not been followed.”
But South Australian Opposition Leader Steven Marshall claims the government “wants to cover up this mess”.
“We heard of the devastating situation with Andrew Knox where a group of patients were given the wrong chemotherapy dosages,” he says.
“They were told by SA Health, ‘Look don’t go public with this because it will undermine the confidence the public has in the health system.’
“When it eventually did come out, they found that the information that they had been fed was completely incorrect and in fact they had even greater problems with the dosages that they had been given.”
For most of the affected patients who are still alive, taking legal action is a low priority as they continue a battle against an awful illness.
But they do believe the government should do the right thing and make ex-gratia payments to acknowledge the emotional pain and distress of being told their treatment for life-threatening acute myeloid leukaemia was compromised.
The government and the health department refuse to comment on legal matters “that may or may not arise from this issue” — an attitude that is only adding to the patients’ distress, something that has been a constant theme throughout the entire sorry saga.
As Professor Marshall found, though all patients were aware of the risk and the hoped-for benefits associated with their treatment, those who have relapsed have unfortunately had to cope with the knowledge that they accidentally received a reduced dose.
“While patients were informed of the error and varying levels of open disclosure were undertaken, in hindsight it did not seem that the level of patient and family distress was always fully appreciated,” he said.