Utrecht, Netherland – 10th March, 2019: 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.
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.
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 myself 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.”
Source: https://www.irishexaminer.com/breakingnews/lifestyle/healthandlife/remembering-adrienne-taking-a-stand-against-the-system-909864.html