Can­cer scan­dals

Adri­enne Cullen on what the Nether­lands and Ire­land could teach one an­other.

The Irish Times - Weekend Review - - FRONT PAGE - Adri­enne Cullen in the Nether­lands

When I first read about Vicky Phe­lan, my heart missed a beat. The par­al­lels with my own story – which I wrote about in these pages two weeks ago – were strik­ing, and deeply dis­turb­ing.

Like Vicky, I had been di­ag­nosed with cer­vi­cal can­cer.

Like Vicky, my can­cer had spread and was now ter­mi­nal.

Like Vicky, my life could have, should have, been saved – ex­cept we were both let down in the worst pos­si­ble way by the very peo­ple we trusted to keep us safe.

Vicky’s can­cer lay un­treated from 2011 to 2014 as she got on with her life in An­na­cotty, Co Lim­er­ick, un­aware of the le­sion that threat­ened an early death.

My 2011 test re­sults lay un­seen for two years in my file at the Univer­sity Med­i­cal Cen­tre in Utrecht in the Nether­lands, also promis­ing a life sen­tence of tu­mours, surgery, ra­dio­ther­apy and chemo­ther­apy fol­lowed by a death, decades too soon.

We were in dif­fer­ent coun­tries, hun­dreds of miles apart, but our sto­ries touched – not least be­cause of how we were treated by health au­thor­i­ties when the con­se­quences of their er­rors were dis­cov­ered.

Both Vicky, in Ire­land, and I, in the Nether­lands, sick as we are, had to be­come lit­i­gants and go pub­lic in or­der to call those re­spon­si­ble to ac­count.

Min­is­ter for Health Si­mon Har­ris de­clared dur­ing the week that no ter­mi­nally ill woman should have to drag her case to court. But that’s ex­actly what seems to be ex­pected of ter­mi­nally ill pa­tients.

In Ire­land, as in the Nether­lands, if we don’t shout from the rooftops what has hap­pened to us, the wheels of Big Health just keep rolling on. Noth­ing stops, no one is ac­count­able, noth­ing is learned and other lives are put in jeop­ardy.

As Ire­land strug­gles with a health sys­tem in chaos, the Dutch ap­proach is of­ten pointed to as an ex­am­ple of how to do things prop­erly.

It is true that many as­pects of the Dutch sys­tem work bet­ter than ours: wait­ing lists are shorter, pa­tients don’t usu­ally lan­guish on trol­leys in hospi­tal cor­ri­dors, health care is free at the point of use. But when things go wrong, Dutch health lead­ers are ar­guably worse than ours at be­ing open about their mis­takes and putting the needs of their dam­aged pa­tients be­fore their own rep­u­ta­tions.

Open dis­clo­sure

Open dis­clo­sure and duty of can­dour pro­to­cols are in­ter­na­tion­ally recog­nised as ther­a­peu­tic tools. They in­struct health­care providers to in­form pa­tients and their fam­i­lies im­me­di­ately about er­rors, apol­o­gise to them, pro­vide spe­cial­ist sup­port, and in­volve them in in­de­pen­dent in­ves­ti­ga­tions.

When my can­cer was first di­ag­nosed, no one at Univer­sity Med­i­cal Cen­tre in Utrecht ( UMCU) had ever come across these con­cepts. My hus­band, Peter, and I were left to fend for our­selves.

After a five- year- long bat­tle, UMCU fi­nally took ad­vice on how to im­ple­ment an open dis­clo­sure pro­gramme, and the first an­nual “Adri­enne Cullen Lec­ture on Open Dis­clo­sure” was held there last month. The coun­try’s seven other univer­sity hos­pi­tals are fol­low­ing suit, but these pro­grammes are in­com­plete, vol­un­tary and not over­seen by any health author­ity.

In Ire­land, we see from Vicky’s case that the ex­e­cu­tion of these pro­to­cols falls abysmally short. But at least the Depart­ment of Health, the HSE and health providers are aware of the need for them. HSE di­rec­tor gen­eral Tony O’Brien is on record for be­ing “un­am­bigu­ously in favour of a manda­tory duty of can­dour”. Now would be a good time, HSE.

On the sub­ject of apolo­gies and their ther­a­peu­tic value, it was quite some­thing for me to read that Si­mon Har­ris picked up the phone and called Vicky Phe­lan to apol­o­gise per­son­ally. It was the right thing to do, and the de­cent thing. It wouldn’t hap­pen here.

As Peter tweeted re­cently: “Hell would freeze over in the Nether­lands be­fore the health min­is­ter would phone a pa­tient to apol­o­gise or ask how she was.”

I even­tu­ally suc­ceeded in ex­tract­ing a stiff, writ­ten apol­ogy from UMC Utrecht in 2016, three years after the neg­li­gence was dis­cov­ered. It was the first ever apol­ogy sent by any Dutch hospi­tal to a pa­tient they had harmed.

Le­gal sys­tem

Peter and I were very im­pressed to learn in 2013 that, in the Nether­lands, when a hospi­tal ad­mits med­i­cal neg­li­gence, it starts to pay the pa­tient’s ¤ 350- an- hour le­gal costs.

How­ever, 2 ½ years later, we be­gan to see the flaws in the sys­tem.

Al­most no med­i­cal neg­li­gence cases ever go to court, and so awards are piti­fully low in com­par­i­son with other EU coun­tries. Our lawyer warned us that the high­est award ever paid to a pa­tient here was to a man with haemophilia who had con­tracted HIV from a blood trans­fu­sion in the 1990s. He was awarded, in guilders, about ¤ 130,000. Some 20 years later, our own lawyer cau­tioned that I would be of­fered a sim­i­lar amount.

Worse than that, if I died be­fore we could set­tle, my claim would die with me. Here, fam­ily mem­bers can’t sue for pain and suf­fer­ing caused by the death of a hus­band, wife, fa­ther, mother or child.

So we stopped deal­ing with the lawyers and de­cided to go pub­lic. Just be­fore the first story about my case ap­peared in the Dutch daily news­pa­per NRC Han­dels­blad, UMCU and its i nsur­ers off ered us ¤ 545,000. It was, by a coun­try mile, the high­est ever com­pen­sa­tion re­ceived by a pa­tient in the Nether­lands.

Although the le­gal sys­tems in Ire­land and Hol­land are very dif­fer­ent, there was no dif­fer­ence in the en­thu­si­asm with which con­fi­den­tial­ity clauses were pro­duced in each coun­try.

Vicky has spo­ken of her dis­gust at this, and her so­lic­i­tor, Cian O’Car­roll, re­ported that “enor­mous ef­fort and en­ergy were put into forc­ing Vicky to re­main silent”.

Like Vicky, Peter and I re­fused, point-blank, to be si­lenced. On this point, un­der the Dutch sys­tem, we got less sup­port from our lawyer than Vicky Phe­lan ap­peared to get from hers. The me­di­a­tion- type sys­tem here is fo­cused on keep­ing both par­ties “happy” and reach­ing an am­i­ca­ble con­sen­sus. With Ire­land’s ad­ver­sar­ial sys­tem, lawyers are more firmly rooted in their clients’ in­ter­ests.

The is­sue of such clauses reached boil­ing point in the Nether­lands in 2016 when the mother of a 21-year-old man who died at Ter­gooi Hospi­tal near Hil­ver­sum signed a clause that pre­vented her from speak­ing to the me­dia, tak­ing a dis­ci­plinary case against the hospi­tal, re­port­ing her son’s death to the health in­spec­torate or dis­clos­ing the terms of the agree­ment to any third par­ties. She then promptly went to the me­dia and told them ev­ery­thing.

The health min­is­ter at the time, Edith Schip­pers, pub­licly con­demned the use of con­fi­den­tial­ity clauses by hos­pi­tals against their pa­tients. She strongly urged hospi- tals not to com­pro­mise their pro­fes­sion­al­ism in this way, ex­plain­ing that pledges of se­crecy worked against any at­tempt to mon­i­tor the qual­ity and safety of care given to pa­tients. They are also grossly in­sult­ing, dis­tress­ing and hurt­ful to those same pa­tients.

The re­la­tion­ship be­tween the Dutch health in­spec­torate ( IGJ) and the hos­pi­tals is based on trust. Hos­pi­tals alone are re­spon­si­ble for the qual­ity of the care they de­liver and how they de­liver it.

Many calami­ties

The health in­spec­torate doesn’t ques­tion this, and be­lieves that hos­pi­tals can sim­ply be trusted to do the right thing when care fails. Yet the in­spec­torate ad­mits that many calami­ties that oc­cur in hos­pi­tals, which should be re­ported to them, aren’t.

In the case of UMCU alone, my case wasn’t re­ported to the in­spec­torate when it was dis­cov­ered in 2013, nor were sev­eral other cases that came to the at­ten­tion of the me­dia in 2015.

In one of these cases, a pa­tient’s carotid artery was al­legedly cut dur­ing surgery and he died as a re­sult. His death was reg­is­tered as a death from nat­u­ral causes and so the coro­ner was not in­formed. This calamity was also not re­ported to the in­spec­torate un­til a whistle­blower at the hospi­tal con­tacted an in­ves­tiga­tive TV re­porter.

When I look at all the sim­i­lar­i­ties and dif­fer­ences be­tween the Dutch and Ir­ish re­sponses to med­i­cal harm, what stands out most for me is the way the me­dia and the Ir­ish pub­lic have re­sponded to Vicky Phe­lan and stood along­side her. That doesn’t hap­pen here.

The Dutch pub­lic doesn’t speak out in the way we gobby Ir­ish do, or write an­gry books like this gobby Ir­ish­woman is do­ing. They are a more com­pli­ant na­tion and di­rect pub­lic opin­ion plays lit­tle part in so­cial change or in­flu­enc­ing govern­ment. ‘Polder Model’

The “Polder Model”, which the Dutch de­pend on to form con­sen­sual opin­ion, moves piteously slowly. Noth­ing changes here un­less it ab­so­lutely has to, and any change that does hap­pen fre­quently takes place away from pub­lic scru­tiny.

We have no opin­ion­ated and pas­sion­ate ra­dio phone-ins here like there are in Ire­land, where every­one has a view and the facts get an­a­lysed and chal­lenged and parsed un­til the truth comes out. Pub­lic dis­plays of out­rage, and the strong emo­tions that Vicky’s case en­gen­dered, would be re­garded as aber­rant here.

I think the Dutch are miss­ing a trick. We might be do­ing lots of things wrong in Irel and but we’ve got this right. Vicky Phe­lan’s case has touched a nerve in every­one from the Taoiseach to the me­dia to the gen­eral pub­lic. How bet­ter can we sup­port her than by lend­ing our voices to hers?

“By God, I’m go­ing to take these guys on,” Vicky told RTÉ ear­lier this week. “They have 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.

Like Vicky, I had been di­ag­nosed with cer­vi­cal can­cer. Like Vicky, my can­cer had spread and was now ter­mi­nal. Like Vicky, my life could have, should have, been saved

Adri­enne Cullen at her home in Voorschoten: she found the par­al­lels with her story and that of Vicky Phe­lan (left), strik­ing, and deeply dis­turb­ing. PHO­TO­GRAPHS: JU­DITH JOCKEL, COURTPIX

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