Fintan O’Toole: Ireland should not need heroines like Vicky Phelan

“Unhappy,” wrote Bertolt Brecht, “the land that needs heroes”. Or, he might have added, heroines.

The death of Vicky Phelan reminds us that there is no such thing as an ordinary person. It is just that people who would prefer to be getting on with their lives are forced by official negligence to show how extraordinary they are.

Too often in Ireland, the heroic is intertwined with the awful. It comes with a savage imperative of self-disclosure. Citizens have to give up their private selves because our collective public realm has failed them.

Phelan had to make her terminal illness a political matter. Mark and David Ryan had to go on RTÉ Radio to talk about how they were abused as children in Blackrock College.

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Apart from the courage and eloquence of such heroic people, there is a profound connection between the CervicalCheck scandal that Phelan did so much to expose, and the impunity enjoyed by institutional abusers. Both are about silence and silencing.

One of the things that made Phelan heroic was her refusal to sign a non-disclosure agreement when she settled her case against Clinical Pathology Labs US in relation to a false smear test result. But it often seems that official Ireland has an NDA wired into its brain.

Non-disclosure is a habit of mind, a default state. And Phelan forced us to face two things. It is not all about the Church. And it is not all about the past.

[ Miriam Lord on Vicky Phelan: She didn’t want accolades or broken promises. Just action and change ]

Let’s start with a tweet from Leo Varadkar, then taoiseach, in September 2018: “We all want something good to come out of the CervicalCheck controversy and all the pain it has caused… Let’s once and for all embed a culture of open disclosure, grace & compassion across our health service.”

These are weasel words. “Embed a culture” sounds nice – but it is meaningless. In any serious response to the scandal that ultimately led to Phelan’s death, we would delete “embed” and insert “enforce”.

The most shocking aspect of that scandal was not that smear tests were screwed up. It was that the State did not then tell the women involved what had happened.

This was not an aberration. The women were not told because there was no legal requirement to tell a patient about a medical error, even if not doing so threatened her very life.

Dr Gabriel Scally, in his review of CervicalCheck, wrote that: “The current policy and practice in relation to open disclosure is deeply contradictory and unsatisfactory. In essence, there is no compelling requirement on clinicians to disclose. It is left up to their personal and professional judgment.”

But why is there “no compelling requirement . . . to disclose”? Because, less than a year before Varadkar’s tweet, his own government deliberately blocked the introduction of such a requirement.

In November 2017, the Dáil debated the text of the Civil Liability (Amendment) Bill. That text, as passed during the committee stage of the debate the previous June, included a requirement for mandatory disclosure of serious medical errors.

But at a very late stage, the minority Fine Gael government moved to replace mandatory disclosure with so-called “voluntary open disclosure”. The tweaking of one word made all the difference. The government’s amendment was “to delete ‘the health services provider shall make,’ [a disclosure] and substitute ‘the health services provider may make’”. (Fianna Fáil facilitated this change by abstaining on the vote.)

There is a world of difference between “shall” and “may”. A huge space is opened up in which the right of the patient to her own information disappears.

[ Death of Vicky Phelan throws into focus Government inaction on key promises ]

When legislation says “may”, it contains a silent addition: or may not. CervicalCheck had, in principle, a policy of voluntary open disclosure to women. It just volunteered not to tell them about information that was, for them, literally vital. It chose, when it finally had to give that information, to do so in a manner that Scally characterised as “damaging, hurtful and offensive”.

“May” does not work in Ireland. It did not work to prevent children from being abused in institutions and schools. It did not work to prevent the catastrophic corruption of our banks. And it did not work to get CervicalCheck and the HSE to tell women what they so desperately needed to know.

We’re up to our necks in statements of intent and policy guidelines about full disclosure. The HSE defined open disclosure as “vital” in 2008. The Health Information and Quality Authority made it a formal standard for the health system in 2012.

Yet, somebody, somewhere always seems to manage to insert a paragraph that makes all of this high intent null and void. In the HSE’s fine-sounding Open Disclosure: National Policy document, everything is plain sailing until we suddenly hit an underwater reef that tears a hole in the entire vessel.

Somebody, mysteriously, managed to put this in: “When a clinician makes a decision, based on his/her clinical judgment, not to disclose to the service user that an adverse event has occurred, the rationale for this decision must be clearly documented in the service user’s healthcare record”.

This comes with no explanation, no qualification, no reasoning as to why, having gone on for pages about the necessity for full disclosure, we are told out of the blue that a clinician may, after all, set it aside if his or her “clinical judgment” is that it’s okay to do so.

How does all of this happen? How do national policies have little time bombs inserted into their undercarriages to destroy their whole purpose?

How does a government in 2017 deliberately scuttle mandatory disclosure, even while claiming to support it? Why is it only now, in the Patient Safety Bill currently before the Dáil, that a policy officially deemed “vital” 14 years ago may (if it is not again defanged at the last minute) be implemented?

These are not accidental failures of governance. They happen because, behind the scenes, there are powerful interests that want them to happen.

We have seen, time and again, that no ethical standard is applied in Ireland unless there is (a) a legal obligation and (b) accountability for individuals. Those who know their way around the system are still very good at making sure these terms and conditions do not apply.

And so we need our Vicky Phelans. We create systems in which decency can be achieved only through personal moral force. To cut through the NDA attitude, you have to be courageous, indefatigable, relentless, eloquent, charismatic. What boring legislation should do has to be done instead with heroic self-exposure.

We should mourn a national heroine. But we should honour her by making it unnecessary for anyone else to be her.