In the space of a week in early 2015, Catherine Fowler’s life was turned upside-down when her father and her aunt both suffered the same rare cardiovascular condition.
The huge differences in the way the two cases – one in Ireland and one in the UK – were treated, and the way subsequent investigations were conducted in Ireland, has turned her into a medical campaigner.
Fowler is trying to raise greater awareness of the condition, aortic dissection, but she is also campaigning for positive changes in the way investigations are handled when medical errors are made.
The absence of a framework for ensuring recommendations made at inquests are implemented undermines the process, she says, speaking in advance of the Pathways to Progress conference on medical negligence in Sligo.
“A critical weakness is the absence of a legislative scheme to effect change from inquest recommendations and ensure accountability. This questions the true value of the process.”
Her father, Tim Fleming, a 69-year-old Kerryman living in England, was on a short trip to Dublin when he became unwell with severe back, chest and abdominal pains. "Within 20 hours of being brought to Tallaght hospital, Dad was dead," she recalls. "At the critical point of handover between the emergency department and the surgical team, Dad's chances of survival began to slip away. The correct diagnosis was not made and my father paid the ultimate price with his life."
Different experience
Her aunt’s experience – she received treatment in the UK – was very different. “Her symptoms were immediately identified, effectively communicated and urgent arrangements were made to transfer her to a facility where emergency cardiac surgical services were on hand. This ensured she was treated by surgeons with the appropriate experience and expertise,” says Fowler.
As a result, her aunt is a survivor of aortic dissection, which occurs when an injury to the body’s main artery allows blood to flow between the layers of the aortic wall, forcing them apart.
“If you don’t get the diagnosis right, the condition will go untreated and 50 per cent of patients will die within 48 hours.” Her father died within 20 hours.
The loss of “my best friend” triggered a search by his family for answers. “We were driven from the outset to establish the facts, understand the events which led to our father’s demise and, importantly, to ensure that learning took place to avoid future unnecessary loss of life,” says Fowler.
Family members met representatives of Tallaght hospital, who explained Fleming’s death would be attributed to natural causes and there would be no inquest. This view was confirmed initially by the Dublin City Coroner, but after representations from the family it was decided to hold an inquest.
Last May, the inquest was heard over two days before a jury. It returned a verdict of medical misadventure, which does not apportion blame but states death was the unintended outcome of actions taken.
The jury recommended improvements in written communications between doctors, that surgical staff must be retained within hospitals on a 24-hour basis to approve scans and treatments, and that all staff be made more aware of the rare aortic dissection condition.
“Our experience taught us it is not mandatory in Ireland for inquest recommendations to be implemented. There is currently no framework to ensure effective change is implemented,” says Fowler. “If you want to formally establish the facts and bring about change, you have to bring determination, resilience and a commitment to continuously question and challenge. You need to be prepared to explore, expose and revisit disturbing and harrowing experiences of a loved one. You also need to be willing to raise public awareness through the media.”
‘Deny and defend’
The traditional response of the health system to medical misadventures has been characterised as “deny and defend”. The Fleming case shows evidence of a new willingness of hospitals to engage with families and learn from events.
Tallaght, which has expressed regret for aspects of the care provided to Fleming, has set up a working group to explore ways of caring for patients with similar conditions.
"The hospital has shown magnificent generosity in agreeing to allow the family participate in this review," says solicitor Roger Murray of Callan Tansey, the organiser of the conference.
He says written apologies are often given to families at the conclusion of cases but what they want to know is: “Do the apologies mean anything? Will things change? Have lessons been learned?”
The HSE should ask for families’ help at the same time as they seek forgiveness, he believes. “They should now follow the example of Tallaght and take the brave move of appointing some injured patients or family members to sit on patient safety or risk review committees.”
“I don’t want my father’s death to be in vain,” says Fowler. “If dad’s loss of life can make a change for others who find themselves in a critical condition in an emergency department, then something very positive will come out of the pain.”
