Lack of disclosure leaves patients in the dark

Q. What’s ‘Open Disclosure’?

A. The HSE uses the Australian Commission on Safety and Quality in Health Care’s definition: “Open Disclosure is an open, consistent approach to communicating with patients when things go wrong in healthcare. This includes expressing regret for what has happened, keeping the patient informed, feedback on investigations and the steps taken to prevent a recurrence.”

Q. Sounds serious. Is it treated as such?

A. From the point of view of patients and families affected by things going wrong, it’s not only serious but essential. Time and again, we hear families tell of their despair and anger at facing a ‘wall of silence’ from health care managers when they need answers as to why things went wrong.

Q. Where do we hear this?

A. All too often in the High Court after people spend years looking for answers.

Q. But doesn’t the HSE have an Open Disclosure policy that would negate the need for this?

A. They do have a policy, and training sessions, and even a national project lead for open disclosure — Angela Tysall, who’s based at the HSE Quality Improvement Division in Donegal. They also have the influence of the State Claims Agency which says it is: “committed with the HSE in ensuring that open disclosure remains a pivotal part of good business within our health services”.

Then there’s the ombudsman who has spoken often of the need for a “duty of candour”. And last but not least, there’s the Taoiseach who, when minister for health in 2015, told this newspaper: “When something goes wrong, it’s OK to say that you’re sorry about what happened. It does not mean you’re accepting liability. There is a never a good reason to conceal the truth from a patient or their family once the facts are known. Aside from making sense for a human point of view, it’s the right thing to do financially.”

Q. Why financially?

A.The experience internationally is that where patients are dealt with honestly, they are less likely to want to sue or to have to sue to get information.

Q. And yet Open Disclosure is in the news. At a guess, that’s not because of the great savings it has been making for the HSE?

A. Good guess. We have learnt this week that women who had cervical smear tests that came up clear but later, on review, were found to be cancerous or at least suspect and in need of further checks, were not told this.

Q. We found this out how?

A. In the High Court, again, where a terminally ill mother of two had to go to get answers as to how she was passed as clear in a routine test but had advanced cervical cancer on her next test. And she’s not alone. Under disclosure rules, documents lodged by the HSE show there were more than 200 women in this situation with no obligation or pressure exerted to tell them there were concerns over their tests.

Q. Which disclosure rules?

A. The ones that the courts impose. Disclosure is obligatory in courts — it’s an optional extra elsewhere.

Q. But shouldn’t it be mandatory so as to reduce the need for people to go to court in the first place?

A. That idea was considered when a bill on the issue was under Oireachtas scrutiny in 2016 and 2017, but the resulting legislation, the Civil Liability (Amendment) Act 2017 only set out the safeguards for people making disclosures, ensuring the information they gave and expressions of regret cannot be used against them in any subsequent court case.

Q. So it is about protections for practitioners, not patients?

A. Correct.

Q. Who tipped the balance in that way?

A. Doctors, nurses and consultants all lobbied hard to keep open disclosure voluntary. The State Claims Agency also came down against making it mandatory. And it’s worth noting the code of conduct of the Medical Council, the doctors’ regulatory body. While it says doctors have a duty to support a culture of candour, it also states: “Patients and their families, where appropriate, are entitled to honest, open and prompt communication about adverse events.” It’s the ‘where appropriate’ bit that stands out.

Q. Any chance the current scandal might change things?

A. Health Minister Simon Harris says he’ll bring new legislation before the Oireachtas making open disclosure mandatory.

Q. But won’t the same lobbying go on again?

A. Undoubtedly. But there’ll most likely be a new government so it probably won’t be his problem.

Q. Why would practitioners not be open to being open anyway?

A. Fear of being scapegoated would be one reason. It’s notable that healthcare managers who are responsible for the conditions in which medics work — and therefore must share responsibility when things go wrong — are not subject to sanction by any regulatory body. Fear of damage to career, fear of the reaction of patients or their families and, ironically, fear of adverse publicity are all mentioned as reasons too.

Q. That’s a lot of fear — must be a fearful condition to manage.

A. It seems so. It even has a name — veritaphobia.

Q. Is that true?

A. I’ll think about telling you, if I deem it appropriate.