Remembering Adrienne: Taking a stand against the system

Peter Cluskey recounts how his wife, Adrienne, died on New Year's Eve after a Dutch hospital "lost" tests results in 2011 that showed she had cancer.

After fighting the Dutch healthcare system for six years until she died on New Year’s Eve, my wife Adrienne Cullen and I were totally at one about why so many bad things happen in hospitals in the Netherlands: Because regulation is based on trust.

Hospitals need to be regulated not because they are filled with people with malign intent towards patients, but because they are enormous, complex, incredibly expensive, multi-disciplinary ‘cities’, where communication is haphazard at best, and the idea of any one individual or committee having an overview is nonsense.

Adrienne about to fly over Malta in an ancient Cessna
Adrienne about to fly over Malta in an ancient Cessna

Patients, these hospitals figure, need to be kept firmly where they belong — in the waiting room. That’s not to be naïve. Of course, without procedures nothing will work. The problem, however, in failing to have a culture of partnership between doctors and patients is that when things go wrong, who loses out? Not the hospital. It’s a fact of corporate life that when large institutions are challenged, they do what it takes to survive — and often that’s not a pretty sight.

In Adrienne’s case that bad behaviour meant the UMC (University Medical Centre) Utrecht not reporting to the health inspectorate in 2013 that a researcher had ‘found’ test results that had been ‘lost’ in 2011, and which showed that the patient involved had cervical cancer which must have advanced during that time. Their Bart Simpson-esque logic was that so much time had elapsed, no useful lessons could be learned by reporting themselves for their negligence — even though it was during those two years that Adrienne’s cancer had not just advanced but become terminal.

Adrienne and husband Peter at her UCC conferring
Adrienne and husband Peter at her UCC conferring

Despite protests from Adrienne and one of its most senior doctors, the hospital used much the same self-serving logic to avoid carrying out an investigation into what happened to Adrienne’s test results, whether a transition from paper to electronic filing played any part, and if so, how likely it was statistically that hers were the only results lost? That begs the awful question: Are there others out there who don’t yet know what awaits them?

When it became clear that Adrienne was not about to slink away quietly with €130,000 as compensation for losing her life — that was the Dutch courts’ highest award at the time — the hospital instructed its doctors that all communication was to be through its legal department, insurers, and loss adjusters. This was a challenge that Adrienne, tired and sick-unto-death though she was, accepted with a resolve powered by pure disgust. “I suppose it’s hardball time,” she smiled at me with resignation.

That’s why she called her book Deny, Dismiss, Dehumanize: What Happened When I Went to Hospital. I was with her every step of the way, and that just about sums it up. Her ‘3 Ds’, as we called them.

Would her remaining months be worthwhile if she bowed to what we saw as bullying a dying woman? “No” was her answer. She never wavered. The doctors’ adage, ‘First, do not harm’, seemed like a quaint idea from a distant galaxy.

In fact, one of her doctors told me afterwards: “It was the biggest mistake of my career: Allowing m

yself to be told by the people who run this hospital how I should or should not deal with one of my own patients. It still makes me feel ashamed.”

In a nutshell, Adrienne walked into an ultra-modern Dutch university hospital to see if it could treat a nagging illness. Instead, the negligence of the hospital left her terminally ill. Then, while accepting 100% legal liability, it began an actuarial process aimed at reducing the compensation for the destruction of her life to a minimum.

“Nothing to see here” was its response to initial media queries about her case, which would become the most infamous here in the past decade. It set a new legal precedent for compensation to patients who lose their lives or are damaged through negligence, and forced new ‘open disclosure’ protocols into all seven of the country’s university hospitals in cases of ‘avoidable’ harm. Adrienne’s answer to those who seemed to think that having terminal cancer as a result of negligence was more or less the same as having terminal cancer through life’s ill luck was, “I’m not dying of cancer, I’m dying of medical negligence.”

And before you think, ‘Well, there can’t be many cases like this’, here’s the chilling reality: Some 2,000 people die as a result of ‘avoidable medical negligence’ in the Netherlands every year. Just think about that word, ‘avoidable’.

Worse still, the figure balloons to almost 100,000 deaths across the EU annually — though neither the EU nor MEPs seem to have anything to say about it. Why is it such a secret world? Because in too many cases the hospitals impose non-disclosure agreements or ‘gagging clauses’ with the not-so-subtle subtext, ‘You may be dying, but if you tell anyone how it happened, we’ll be calling for your compensation back’.

When you’re dying of cancer, have had multiple operations, chemotherapy, and radiotherapy perhaps more than once, can’t sleep with the pain of the tumours, worry 24-7 about metastases, and want your family looked after when you’re gone, you’re not going to fight City Hall… are you?

WARRIOR WOMAN: Adrienne hearing from a hospital spokesman that a leading Dutch investigative journalist has been excluded from the openness talk.
WARRIOR WOMAN: Adrienne hearing from a hospital spokesman that a leading Dutch investigative journalist has been excluded from the openness talk.

Adrienne Cullen did. She said “no way” to the inevitable gagging clause. She fought battle after battle and won - the highest-ever compensation for medical negligence, the first-ever written apology from the CEO of a Dutch hospital, an annual seminar on open disclosure after harm named after her by the hospital that caused her death, even finally forcing UMC Utrecht to reverse its decision not to carry out an investigation.

That “no way” attitude was the reason she recognised a kindred spirit in Vicky Phelan.

She wrote this about Vicky in The Irish Times last May: “‘By God, I’m going to take these guys on. They’ve fecked with the wrong woman this time.’ Those words took my breath away. I know the place inside that they come from. I know the finely honed pain and righteous anger that forged them. I’d just like to say to Vicky, ‘Go girl! And if there’s anything I can do to help you, just say the word.’

Adrienne also wrote about the parallels between her case and Vicky’s. Both had cervical cancer, both had been let down in the worst possible way by the health services they trusted, both were forced to become litigants in pursuit of justice, and both had to go public to get their voices heard.

If there was a difference, Adrienne felt it was that the Dutch public of 17m cared less than the Irish — and that that indifference was reflected in the hospitals’ lack of any moral compass.

More on this topic

Memoir on Vicky Phelan to be published in September

Vicky Phelan (guest editor): Why it’s essential children get the HPV jab

Vicky Phelan (guest editor): Supporting children with a parent undergoing cancer treatment

Vicky Phelan (guest editor): Five women, from their 20s to 50s, on how a cervical smear test saved their lives

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