Patients and families could play a role in helping hospitals learn from mistakes

Early in his career, Séamus O’Reilly applied for a post from which the previous incumbent had been fired, after a chemotherapy overdose left one woman dead and another with irreversible heart damage. He didn’t end up in the job but remained interested in how the hospital responded to its mistakes. One key measure was the establishment of Patient Family Advisory Committees. Professor O’Reilly tells Health Correspondent Catherine Shanahan that the time is ripe to consider a similar move here, in light of the CervicalCheck scandal.

Patients and families could play a role in helping hospitals learn from mistakes

Early in his career, Séamus O’Reilly applied for a post from which the previous incumbent had been fired, after a chemotherapy overdose left one woman dead and another with irreversible heart damage. He didn’t end up in the job but remained interested in how the hospital responded to its mistakes. One key measure was the establishment of Patient Family Advisory Committees. Professor O’Reilly tells Health Correspondent Catherine Shanahan that the time is ripe to consider a similar move here, in light of the CervicalCheck scandal.

It was 1996 when Séamus O’Reilly interviewed for a job in medical oncology at the Dana Farber Cancer Institute in Boston, a year after the discovery that chemotherapy overdoses had killed 39-year-old Betty Lehman, a Boston Globe health columnist and mother of two, and caused irreversible heart damage to 53-year-old teacher, Maureen Bateman.

The women were receiving experimental breast cancer treatment and a young doctor decided an instruction that read “cyclophosphamide dose 4 grams/sq m (of body surface area) over 4 days” meant four grams each day and not, as per the correct interpretation, 4 grams spread over four days.

A flawed research protocol appeared to confirm his mistake. For Ms Lehman, the consequences were fatal; for Ms Bateman, tragic.

Such a searing, and ultimately, public mistake, meant the incident became well known in the cancer community. Professor O’Reilly was aware of it when he applied for the job.

Although he ultimately remained at John Hopkins Hospital in Baltimore, where he was subsequently assistant professor in medical oncology, he retained an interest in the Dana-Farber, and in its learning.

“I remember when I visited the hospital at the time, it was a very sobering environment to walk into. The events had just taken place and become public,” he says.

A decade later, he attended a major cancer conference in the US where, at a meeting on health and safety, a document was presented outlining what the Dana-Farber had done in the interim to improve patient safety (‘Key Learning from the Dana-Farber Cancer Institute’s 10-Year Patient Safety Journey’).

Prof O’Reilly, a consultant medical oncologist in the South/Southwest Hospital Group, attended the discussion where he encountered the idea of Patient Family Advisory Committees (PFACs) for the first time.

“I think the importance of the document about the Boston hospital is not how things go wrong, it’s how they are dealt with when they go wrong.

“At this meeting, they said when things go wrong, patients want four things. They want an apology, an explanation, a reassurance that things wouldn’t go wrong again — in other words what’s being done in the system to safeguard against error — and they want compensation.

“But compensation is only part of it, it’s not all of it. I think that sometimes, where people talk about litigation, it’s not all about money. It’s actually about acknowledgement and reassurance.”

By way of illustration, Prof O’Reilly refers to a case in Galway, where a family sued the HSE following the death of their daughter, and how a condition of the settlement was the appointment of a paediatric endocrinologist.

In this particular case, six-year-old Aibha Conroy died three days after she was brought to University Hospital Galway suffering from low blood sugar. Having successfully sued the HSE, the family’s solicitor said their entire mission was to ensure that if another child presented with hypoglycaemia, the hospital would have the necessary expertise.

“That was an intrinsic part of the settlement,” Prof O’Reilly says. It showed how effective families could be in bringing about positive change.

“I think I felt that what they’d done in Dana-Farber, in terms of PFACs coming into the hospitals, being integrated with the service, would be a voice from outside. It would also prevent institutionalisation.

“When you have people coming from the outside in, you have fresh eyes and they also see what’s acceptable or not.

“I mean what’s acceptable to a health care professional after 20 years working at the coalface may not be acceptable to what someone working in retail or banking might see in the treatment of a 60-year-old patient — how our hospitals are structured, mixed gender accommodation onwards, toilet facilities on six-bedded wards — those kind of things.

“But I think it might also empower society to improve healthcare more by being more involved.”

Prof O’Reilly acknowledges setting up such committees would bring challenges — such as governance.

“There’s no point in asking someone to come on a committee if you are not going to empower them, to say to them ‘If you come in, we will listen’.

“And who you pick to come in is important. I feel you could start small [with PFACs] and trial it. There are eight cancer centres in Ireland, there are three cancer screening programmes, so maybe start with that.

“They are all under the National Cancer Control Programme, so you have a single governing organisation above it and each centre could set up its own PFAC.

“I think it might lead to a better health service. Certainly the current formula is not working despite significant investment.”

Does Prof O’Reilly see an opportunity in the movement towards hospital trusts to create a structure that would facilitate PFACs within the groups?

“Yes. I think there is concern that the HSE is top down and it needs to be bottom up.”

He says people working in the HSE need to be empowered to create an environment where constructive decision making can take place.

“That doesn’t seem to happen at the moment. I think you need to break the HSE into smaller units. I think part of the problem is when people feel they are part of a huge organisation, it disempowers them.

“In the States where I worked, it was a huge hospital, 1,000 to, 2,000 doctors coming to work there every day, it was a huge organisation.

“But it was divided into units. So we were the cancer centre and while we were part of the whole, we saw ourselves as the cancer centre.

“And the children’s centre, the eye centre, different units where it was big enough to perform and small enough for people to feel a sense of purpose, a sense of loyalty, a sense of belonging — and that reflects in patient care.”

Prof O’Reilly has worked in Cork hospitals for roughly 18 years. Has there been a change in that time in the way patients are notified about mistakes?

“We are generally quite upfront about it if a mistake is made,” he says, although people are justifiably concerned about litigation and fitness to practice hearings.

Has he made mistakes and put his hand up? “Yes, every clinician has,” he says.

Is there institutional support for owning up to a mistake?

“I think there is support but I think the system could be better,” he says.

“I think the risk management of patient complaints could be better resourced so that patient concerns are dealt with more promptly, because delays in dealing with a concern escalates it.

“I also think there needs to be a system of learning when mistakes occur.”

He says the purpose of the CervicalCheck audit, (which women were controversially not told about at the time) was a learning exercise, to look at how the screening service could be improved.

He says the same could apply to medical negligence cases, where hospitals could review cases where claims were settled to see what could be done better to prevent similar claims in the future.

“The State Claims Agency (which defends claims against the State) could have some system whereby settled claims against a hospital are reviewed by all staff in the hospital, to see what can be learned from them.

“I think we need to have more structures in place where learning can occur from the adverse events that have occurred.”

Does he encourage staff in his own department to come forward if mistakes are made?

“We have a reflective meeting every month where adverse events are discussed and the learning curve comes from that. And we look at how structures can be improved from that.”

But are patients automatically informed if a mistake is made?

“You have to notify them. They would be aware of it themselves — a complication from treatment, for instance, or a delayed x-ray result.

“We tell them and we urge our team to tell. We would say to tell because, you know, it’s never pleasant not to tell. And it’s never pleasant to tell.

“These meetings are not pleasant. But the longer you wait to tell, the worse it becomes.”

He believes there is “no alternative” to mandatory open disclosure.

“There are things you have to legislate for, because otherwise it becomes discretionary, and there are things in medicine, in life, where it’s human nature not to own up.

“When things go wrong and you are having conversations with family, it’s very unpleasant, by its nature. It can be very adversarial and very stressful.”

Prof O’Reilly says he’s concerned “in the current environment that the resources for our risk management department may need to be increased significantly”.

By “current environment” he means the fallout from the CervicalCheck scandal, the erosion of public confidence in the health service, in the context of the HSE not telling 209 women with cervical cancer that a clinical audit of their past tests had found their original smears had failed to pick up cancer warning signs.

And the fact that in 175 of these cases, had abnormal smears been identified, they could have benefited from treatment.

How does Prof O’Reilly, a cancer doctor, feel the CervicalCheck scandal has been handled and have any of the patients he treats said they are not going to go for screening as a result?

“That hasn’t happened,” he says, “the number of calls to the hotlines and the calls to GPs practices would suggest people are concerned about false negatives, they are not concerned about getting the test done.”

What are false negative rates like for the cancers he treats, such as breast cancer?

It can be as high as 50%, he says, for some forms of breast cancer.

“But if you look at mammography screening, it saves lives.”

He believes public trust is going to be “the biggest casualty” of the CervicalCheck scandal. More than a month after the story broke, he says the problem “is greater than we anticipated”.

“I think the concern that arises from it is the factor of trust between patients and the medical community.

“And I have talked to colleagues around the country and all of them have reported that.

“In fact, one hospital has had to assign an administrative officer to deal totally with just processing patient concerns — so it’s significant.

“It came up at a teleconference among oncologists recently.

“What I am hearing from colleagues across the country is that there has been an escalation in patient concerns across cancers, and I think clinicians are very aware of it.”

Moreover, heightened patient concern has led to people looking to review results, going back years. This was creating a significant additional workload, in terms of the administrative logistics of retrieving and photocopying patient files, Prof O’Reilly said.

“Our hospitals are reporting increased Freedom of Information requests since CervicalCheck broke. It was happening before that, but it’s escalated now.

“The hospital group I work in, the South/Southwest hospital group, people are looking for their medical files. And we are also finding patients in the clinic are asking about results from five years earlier.”

In fact, the CervicalCheck scandal is the worst health crisis Prof O’Reilly has witnessed during his almost two decades of working in the Irish health service.

“Which is concerning because we invest as much in healthcare as any other OECD nation.”

“We can’t afford it as a society. I mean we have 10,000 people homeless, we have major infrastructural issues, so spending more is not a solution, but maybe we should be spending better.

“The recession hasn’t helped because the expansion in intrastructure that’s needed to deal with the population hasn’t occurred.

“And my concern is if we keep going the way we are, the stresses on the system are going to increase over time.

“Cancer is my area of interest, but in my lifetime, dementia will replace cancer as the second leading cause of death, after cardiovascular disease.

“The figures are very sobering and the societal challenges are going to be enormous for that.

“I think we really need more societal involvement in our hospitals because I think if that happened, our hospitals would work better and they would be better for patients.

“It would also allow society see the challenges that are there in delivering healthcare, and it might also mean more community empowerment to deal with those problems.

“If you have a PFAC assessing, for example, Emergency Department overcrowding on a regular basis and liaising with other PFACs about it, that will raise the profile of it.

“And within the governance structures, have some definable goals/achievable goals for this.

“I just felt introducing PFACs was a novel approach. We’ve tried loads of different things. We keep repeating ourselves even though we are very aware of history.

Would it be challenging to introduce PFACs?

“Yes. But it might be very productive. I think the unfortunate thing is we keep making the same mistake in society, where we put the institution first.

“So we’ve had the Mother and Baby home scandals, we’ve had hepatitis C, we’ve had Susie Long, Rebecca O’Malley. There is a recurring theme.

“I think that if we don’t do something different on this occasion, if we don’t do something differently to address the issues, we’re condemned to repeat them.”

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