A medical failure, a terminal illness, and a public examination of conscience

Dutch doctors failed Adrienne Cullen. Now terminally ill, she and they have gone public

Adrienne Cullen at her home in Voorschoten, Netherlands. Photograph: Judith Jockel

Adrienne Cullen at her home in Voorschoten, Netherlands. Photograph: Judith Jockel

 

Adrienne Cullen was at work in Amsterdam when the phone call came. It was her doctor, calling from his hospital in Utrecht. An Irishwoman in her 50s, she had been living in the Netherlands for several years.

She had been treated at the hospital – the University Medical Centre Utrecht (UMCU) – in 2011, but had been assured by her doctor that she seemed healthy. Now, two years later, he wanted to see her urgently.

Early in the summer of 2013, she visited the hospital, where the doctor gave her shocking, terrible news. A review of old pathology test results had found that a test for cancerous tissue which he had conducted two years previously had, in fact, been positive.

Despite being told that she seemed healthy, she had had cancer all along. A gruelling course of surgery, radiotherapy and chemotherapy followed. By 2015, tests showed that it had spread. The cancer which had lain untreated for two years was going to kill her.

Seven years to the day after the bungled cancer test, and five years after she was belatedly diagnosed, Cullen is ready to tell her story. The setting she’s chosen is an unusual one: a symposium held at the very hospital where her diagnosis had been “mislaid”. A 300-seat lecture hall is packed. Side-by-side in the front row are CEO of UMCU’s board, Professor Margriet Schneider, and Secretary General of the country’s health inspectorate, Professor Ronnie van Diemen. The Irish Ambassador to the Netherlands, Kevin Kelly sits beside them. Other members of UMCU’s executive and supervisory boards, department heads, medics from the Netherlands’ other university hospitals and hospital lawyers fill the seats behind them alongside patients, doctors, nurses and final-year medical students. Reporters and radio and TV journalists are there to report on this candid and honest event that has captured the curiosity of the Netherlands’ traditionally reserved health sector. 

Small and affable, dressed in a green jacket and black trousers, she sits quietly at the side of the stage, and finishes her preparations. Alongside her, her gynaecologist, Prof Huub van der Vaart, and his former boss, Prof Arie Franx. They, too, will speak.

All three look unruffled, but their presence is, in its own way, revolutionary. This will be the first time in the Netherlands – perhaps in the world – that a patient who has been seriously harmed by a medical error appears in public, together with their doctors, to jointly talk about what went wrong, and the terrible effect it had on all three of them.

Visibly nervous

The first to present is Huub van der Vaart , Adrienne Cullen’s gynaecologist. He looks the part – smartly professorial in a blue blazer and khakis – but is visibly nervous. “These next two hours will be the most difficult of my career,” he says.

With typical Dutch directness, he makes a remarkable confession. “I am the doctor who is responsible for a delay of two years in diagnosing the cervical cancer of Adrienne Cullen and by doing so greatly reduced her chances of survival. She will not be cured from this disease, and that hurts every day.”

On the face of it, there would appear to be few better places for a patient such as Cullen to be treated than UMCU, a vast teaching hospital on the edge of one of the Netherlands’ most beautiful cities.

Since 2006, the Dutch health system has been based on the idea that all Dutch citizens – along with expats – are obliged to buy insurance. Patients usually have to pay the first few hundred euros a year of any insurance claim, but those on low incomes receive generous subsidies, and most healthcare is free at the point of delivery.

Inevitably, the system isn’t without its problems. Among other things, many Dutch people complain about the expense of their insurance policies. Overall, though, it works well, and is praised for its equality. For cancer patients, outcomes are usually good. According to a recent report in The Lancet medical journal, the five-year survival rate for cervical cancer in the Netherlands is higher than in Ireland, the UK, the USA or Germany.

The health economist Michiel Verkoulen confirms: “There are maybe one or two places in the world where you get better healthcare than the Netherlands, but not many.”

In Cullen’s case, however, there is little doubt that the system failed. 

Some of the details of what happened remain unclear, but Huub van der Vaart explains the background.

In April 2011, he says, during another procedure under general anaesthetic, Adrienne Cullen underwent an endocervical curettage – a common procedure during which a small sample of tissue is checked for signs of cervical cancer.

The procedure was not necessarily standard for someone in Adrienne Cullen’s position, and there was no particular reason to expect a positive result. However, testing in the UMCU pathology laboratory showed signs of cervical carcinoma – cancer.

This result should have led to further examination, and probably immediate treatment. However, Van der Vaart never saw it.

Swiss cheese

Academics often explain patient safety using the example of Swiss cheese. Human systems, they say, are like slices of Swiss cheese, stacked on top of one another. Small errors or weaknesses in the system are like holes in the cheese, but they only add up to a serious error when the holes line up perfectly through the pile.

In Cullen’s case, it seems this kind of chain reaction is probably what happened. The precise chain of events that led to the failure to communicate the test results to her doctor has never been definitively established, but Cullen’s doctors believe the mistake occurred because the hospital was, at the time, in the process of transitioning from paper to electronic medical records.

As Van der Vaart explains: In 2011, “the system in place to be notified about results was partly electronic, but I always received the results on paper at the outpatient clinic. I would read them, sign them and then they were entered into the paper file.” He would sign a paper copy of the test results to show he’d read them.

In this case, though, the results of the cancer screening apparently were entered into the file without being signed, and it seems likely van der Vaart never saw them. “I had the diagnosis in the palm of my hands, in 2011, but I missed it,” he says.

In April 2013, almost exactly two years after the test was carried out, the mistake was discovered by a research fellow going through old files.

Van der Vaart is not an oncologist, but was experienced enough to realise the implications. “I was in a state of shock and denial for a couple of minutes,” he says.

He contacted Adrienne Cullen to give her the bad news, and she underwent a series of tests which ultimately confirmed she had a large cervical carcinoma. In July 2013 she had surgery to remove it, followed by radiotherapy and chemotherapy.

At this point, there was still a chance that Cullen might be cured, and the mistake would turn out to be unpleasant rather than fatal. However, the original error was compounded by the way the hospital handled it.

I was met with the world’s greatest indifference. No one was interested

Van der Vaart returns to his seat, and the next speaker takes the stage: Dr Arie Franx, who was at the time medical manager of the Woman and Baby division, which included the gynaecology department, making him van der Vaart’s ultimate boss.

Franx is softly spoken and clearly uncomfortable talking about the case, but doesn’t shy away from saying he initially did not handle Cullen’s case appropriately, and didn’t adequately support her or his colleague. He later says it was only months later that he realised “how much I and UMC Utrecht had failed”. “I felt deep guilt and shame”, he says.

Dignified figure

Adrienne Cullen takes the stage. As she begins telling her story, she makes an impressive, dignified figure: small, but with the calm confidence of someone who’s utterly in command of the facts. Cullen grew up in Dublin and Limerick, and had a successful career as a journalist and author in Ireland before moving to France and then the Netherlands, where she worked for a travel website.

It’s clear she’s still grappling to understand how she was treated by UMCU after the calamity was discovered. “I was met with the world’s greatest indifference,” she says. “No one was interested. The care staff I interacted with didn’t know about the mistake, and there didn’t seem to be much enthusiasm to investigate.”

In the years following the diagnosis, Cullen’s health declined. The cancer metastasised. Early in 2015, Cullen was examined by an independent medical adviser – a professor at another leading Dutch hospital. His conclusion was dire. “Curative treatment is no longer possible,” he wrote. “There will only be further deterioration and eventually Mrs Cullen will die.”

The two-year delay in acting on the test results was going to cost Adrienne Cullen her life. According to Cullen, UMCU were sent a copy of the adviser’s report, but made no attempt to contact her about it.

When medical mistakes occur, there are well-established international examples for how hospitals should react. Prue Vines, a law professor who helped Cullen with her case, explains: “In a really short time there should be an apology and an explanation given to the patient by the people involved, backed up with proof that systems have been changed so it won’t happen again.”

In practice, though, open disclosure still isn’t routine. Hospitals struggle to balance the need for transparency and accountability with the need to maintain public confidence in their services. Their lawyers worry about admitting liability, and doctors worry about damaging their reputations.

Dutch healthcare expert Marcel Canoy explains: “Healthcare in general doesn’t have a big tradition of inter-collegial criticism. There’s not an open culture of admitting and discussing and correcting mistakes.”

In the Netherlands, healthcare providers are mandated by law to report serious medical errors to the national health inspectorate, the Health and Youth Care Inspectorate (IGJ). However, the inspectorate requires hospitals to conduct their own investigations, and report what they’ll do to prevent errors happening again. This means hospitals are, to some extent, trusted to monitor their own performance.

In Cullen’s case, it’s clear things were not handled well. The IGJ says UMCU only reported the mistake with her test results in June 2015 – more than two years after it was discovered. They did not submit an official incident report, but a description of what had happened and why they’d decided not to report it in 2013.

The inspectorate concluded the hospital had taken appropriate measures to prevent a similar incident.

Flat-footed response

For Cullen, grappling with a terrible diagnosis, the hospital’s flat-footed response made an already impossible situation even worse. “I felt as though the hospital was an ocean liner sailing on, and somebody had just untied the rope and we were set off to sea to fend for ourselves.”

As her health declined, Cullen was also shocked to discover she wasn’t the only patient to have been harmed at UMCU. In November 2015, the Dutch current affairs TV programme Zembla broadcast an exposé which alleged that UMCU’s Ear, Nose and Throat department had a “culture of fear”, which had put patient safety in jeopardy, and that the hospital had failed to report serious medical errors to inspectors.

The IGJ investigated and eventually concluded that while UMCU was generally safe, there were “important shortcomings in several departments” and that in several cases “there was no question of safe and good quality care”.

Back in the lecture hall, Cullen continues telling her story. Her doctors are understandably sombre, but she has a wry, self-deprecating sense of humour, and the audience regularly breaks out in laughter as she pokes fun at her own talkativeness and “control freakery”.

Only once does her composure break, when she shows a series of photos of things she enjoyed before she became ill: holidays in Jerusalem and Istanbul; the Christmas tree she decorates every year; her garden; her much-loved cat. Mentioning her husband, Peter Cluskey, Cullen briefly stifles tears, but swallows hard and continues her story.

She repeatedly pays tribute to the honesty and bravery of her doctors and, asked if she has forgiven them, responds firmly: “Without a doubt . . . it’s a no-brainer. I am awed by . . . the courage and integrity that they have shown,” she says.

Franx and Van der Vaart are both acutely aware that compared to Adrienne Cullen, they have little to complain about. However, Cullen’s case has clearly dealt a heavy blow. Both doctors are visibly upset as they the tell story of what happened. “Doctors, we’re supposed to be tough,” Franx says, looking anything but. It’s also clear that the doctors, like Cullen, were poorly supported by the hospital.

Financial compensation

After the news that her cancer would be terminal, Cullen also set about trying to secure financial compensation. “I wasn’t setting out to get rich,” she tells the audience, “I just wanted our lives to continue on the same financial footing that they had before I got sick.”

However, it quickly became clear that securing compensation would involve another uphill struggle with the hospital. According to Cullen, she was told by a lawyer that she’d be unlikely to receive much more than about €130,000. She was shocked. “There were cars in the UMC Utrecht car park, being driven by hospital leaders, that were worth more than that,” she says, provoking wry laughter from the doctors and nurses in the audience.

There was no way that we were ever going to sign something which meant I couldn’t speak freely about what had happened to me

Had she known then what she knows now about the Dutch legal system, Cullen might have been less surprised. In some countries, compensation payments for medical errors are relatively high. In Ireland, for example, a mother who was diagnosed with cervical cancer after a smear test was wrongly interpreted reportedly was awarded damages of €500,000 in 2006.

In the Netherlands, though, things are rather different. Relatively few compensation claims make it to court, and big payouts are extremely rare. One reason for this is the difficulty of proving liability for a mistake that happens in a hospital. Rolinka Wijne, a Dutch specialist in medical liability, explains: “With things like traffic accidents it’s often easy to prove who was to blame, but in most medical cases, it’s very difficult to prove. Even if a patient does prove liability, they have to prove that their current situation is different than if another doctor had handled the case differently.”

Cullen and her husband eventually settled with UMCU for €545,000, including €350,000 to compensate for pain and suffering, and the rest for loss of earnings. The couple were initially relieved, but then dismayed when they were asked to sign a “gagging clause”.

“We were horrified,” Cullen says, “There was no way that we were ever going to sign something which meant I couldn’t speak freely about what had happened to me.” She refused to sign, and the hospital eventually backed down, and removed most of the clause.

Lack of investigation

Cullen, who is writing a book about her experience, is also sharply critical of the ongoing lack of investigation into her case. Seven years after the error occurred, many facts remain unclear. Her voice rising, Cullen tells the audience: “Many questions still remain unanswered. Was the calamity the result of the move to electronic files? Were there adequate, or indeed, any safety measures put in place during this period to give extra protection to patient data? Were outside companies in the hospital handling this patient data? If so, who were they, who was supervising them, and what training were they given?”

Without an investigation, UMCU cannot answer these questions, but argues that it has learned from Adrienne Cullen’s experience. The lecture event includes a brief presentation from Prof Jan-Willem Lammers, UMCU’s head of patient safety, who explains that the hospital has reformed its procedures for investigating and reporting potential medical errors, and improved training and support for patients and staff.

The Adrienne Cullen Lecture – the first in a series which will cover open disclosure issues – also represents an important step towards building a culture where transparency is automatic.

From Cullen’s perspective, though, the hospital’s changes are too little, too late. It’s also not clear that the principles of “open disclosure” have been adopted in full. The lecture is open to the public, cameramen are told to leave early in the proceedings, but no official recording of the speeches is made.

When a doctor in the audience calls for Margriet Schneider and the hospital’s leadership to resign, a moderator quickly interjects to say the issue is irrelevant. A Dutch TV journalist who tries to film the lecture is turned away, and later arrested for trespass after trying to film outside without the hospital’s permission. UMCU argues that all journalists were welcome, including ones representing major Dutch television stations, and says it was merely concerned to protect its staff from undue pressure or criticism. Nevertheless, the tone of the event is tense at times.

I’d like to think this is the beginning of a new chapter in openness and transparency at UMCU, but there’s still a very long way to go

As the speeches draw to a close, there’s an awkward moment when a hospital representative presents Cullen with a big bunch of flowers, which she politely but very firmly declines. “What we’re discussing here is deep, it’s nasty, it’s offensive,” she explains. “I know that people have apologised, but we’re not best friends.”

To a spectator, Cullen might appear in good health, but she’s often in pain, has had regular surgeries, and knows she may not have long. Now her focus is on sharing her story, and trying to prevent others from suffering as she has. Her great hope is that the lecture, and the ones which will follow, can help drive change, in Utrecht and elsewhere.

“It’s too late for me”, she says, “I’d like to think this is the beginning of a new chapter in openness and transparency at UMCU, but there’s still a very long way to go.”

The audience erupts in thunderous applause, and she quietly returns to her seat.

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