It was one week before Christmas when Olga Kennedy and her young son made the short drive from their town on the coast of Co Mayo to the local public hospital.
Oisín (9), her middle child, had a lump on his head. It appeared just behind his right ear and had grown to about the size of a two-euro coin. A repeat course of antibiotics hadn’t brought down the swelling, nor had it eased the pain.
Inside Mayo University Hospital, Oisín was led into theatre. Most likely, the doctors thought, the lump was what’s called a cystic lesion, and the best thing to do was remove it. But once the operation began the surgeons found something much more sinister – something they had never seen before.
Biopsies confirmed an aggressive form of cancer growing on Oisín’s scalp. It was so rare, Oisín’s doctors would later write, they had never heard of another case involving this type of cancer in the cranium.
What followed the operation on that December day were 3½ years of limbo for the Kennedy family, punctuated by medical appointments, more surgeries and several rounds of chemotherapy and radiotherapy.
Suspended in hope, their lives were divided between Dublin, where Oisín was treated at Our Lady’s Children’s Hospital, and their home on the other side of the country. Throughout it all, says Kennedy, her gentle, mischievous little boy who loved animals and Lego and fishing, showed incredible bravery.
We were so blessed to have Oisín
By 2016, the cancer had spread to Oisín's lung. Kennedy, her husband, Alan, and Oisín's siblings tried to make as many happy memories as they could in the months he had left: limousine rides around their hometown of Westport, a helicopter trip to Galway, meeting his beloved Chelsea football team in London.
Oisín died at home on a Saturday morning in April that year. He was 12 years old. “We were so blessed to have Oisín,” Kennedy says. “But we are heartbroken still.”
Legal threats
Shortly after his death, the relationship between the Kennedy family and the doctors who discovered the tumour fell apart. And since then, there have been legal threats, an almost year-long investigation by the medical watchdog, and a commitment to reform procedures at an acute State-run hospital.
This is not a story about medical negligence: there is no suggestion of shortcomings in the treatment or care provided to Oisín by any of his doctors. This is a story about consent. It is about communication and trust – and the consequences when these fundamental pillars of the doctor-patient relationship are eroded.
Eight weeks after Oisín died, the international medical journal, Diagnostic Pathology, published a case report – essentially, a patient's story – entitled 'Paediatric Ewing like sarcoma arising from the cranium – a unique diagnostic challenge'. The lead authors of the report were Prof Kevin Barry and Dr Ian Robertson, two of the surgeons who first operated on Oisín at Mayo University Hospital, resulting in the diagnosis of a soft tissue malignant tumour on his scalp.
The eight-page paper did not name Oisín, as is standard practice in medical publications, but included the details of his illness and treatment, and images of his scans. It is an almost mandatory requirement of medical journals that authors seek signed consent from patients or their guardians before publishing case reports. A declaration on the paper about Oisín stated: “Written informed consent was obtained from the patient’s parents for publication of this case report and any accompanying images. A copy of the written consent is available for review by the editor-in-chief of this journal.”
The Kennedys were devastated
The problem was, written consent had never been obtained from the Kennedys. The first they learned that a paper had been published about their late son was through a family friend. Yes, the doctors had told Kennedy during Oisín’s treatment that they would one day like to write something for the medical community. But the family was never told it was definitely going to happen, and they were never asked to give their consent.
The Kennedys were devastated. Kennedy had never doubted the doctors’ commitment to her son, but this breach from beyond the grave sent her into a spiral. It became entangled with her grief. She couldn’t let it go.
In August 2016, Kennedy complained to the hospital. "To say that I was crushed is too small a thing," she wrote. "I found myself in a situation where family friends knew more about my son's condition than had ever been explained to me." In September, she filed a complaint about the doctors' conduct with the Medical Council. "I cannot adequately express the extent to which this publication has hurt us," she told the medical watchdog. "We did not get a chance to grieve our son adequately before we were forced to face the details of his illness laid before us on the internet."
Oisín's oncologist from Our Lady's Children's Hospital in Crumlin was also dismayed to learn a case report about his patient had been published. "I, like you, was shocked to hear of its publication notwithstanding the fact that you had no knowledge of this publication," wrote the paediatric oncologist, who oversaw all of Oisín's treatment for the three years after he was transferred from Mayo University Hospital. "I sincerely hope over time the medical profession can regain your trust."
Distress caused
Soon after Kennedy’s complaints were filed, both doctors wrote back to the Medical Council, unreservedly apologising to the Kennedys for the distress caused and proposing a meeting with the family.
They admitted they failed to obtain written consent – “we had forgotten to carry out this final check” – before publishing their paper. “This was an oversight on our part,” the doctors said, “which we regret and attribute to human error.
“There was definitely no intention on our part to deceive Mrs Kennedy or any other party involved during the process of preparing and publishing this manuscript. We believed we acted in good faith at all times and our motivation in producing this paper was to make a contribution to the limited information available on this topic.”
The doctors also said they believed that verbal consent had been given when the matter of publishing a case report was discussed with Kennedy during Oisín’s treatment. The HSE’s national consent policy states that if verbal consent is given, it must be documented in the patient’s file – which, in this case, it was not.
Correspondence from BioMed Central, the publisher of Diagnostic Pathology, shows the doctors were asked to clarify the matter of consent after submitting the case report for publication. In response to an email from Mayo University Hospital, requesting the article be retracted due to the absence of written consent, the publisher said: "When the article was originally submitted, it stated that written consent had been obtained from the patient. We then asked the authors to clarify who they obtained consent from and they confirmed that they had obtained written consent from the patient's parents."
The case report was subsequently retracted. But this was no easy feat. It took many emails from Kennedy and the hospital to finally wipe it from the internet. It has now been replaced with a notice explaining that, contrary to the original declaration by the authors, they failed to obtain consent from the parents.
It said the communication failure was "not serious"
After almost a year, in late July 2017, the Medical Council handed down the findings from its investigation. It ruled that while the doctors failed to communicate with Oisín’s family about the report and falsely told the medical journal consent had been obtained, there was not sufficient evidence of professional misconduct or poor professional performance to warrant further action being taken.
It said the communication failure was “not serious” for three reasons: first, the doctors incorrectly assumed implied consent had been given. Second, the report was anonymised sufficiently so that Oisín was not identifiable. And third, Oisín had passed away, and therefore could not come to any harm.
The findings only added to Kennedy’s feelings of betrayal. “I trusted the doctors the whole way through Oisín’s treatment, I was so grateful to them,” she says. “The Medical Council says it’s not serious but as a patient, or the advocate for a patient, I know that is wrong. It’s wrong that when a 12-year-old cancer patient’s right to confidentiality is ignored, the most you can expect is ‘sorry’.
"So often I have wished that I never had to fight so hard to have someone acknowledge that what the doctors did was wrong and get reassurance that this will never happen to any other patient in Ireland, but as the regulators indicate by their inaction, the doctors are the good guys and I am merely a hysterical mother."
Given the gravity of Kennedy's complaint about the doctors, the general manager of Mayo University Hospital, Catherine Donohoe, dealt with it personally. In a letter to the Kennedys, Donohoe said the hospital would now require all staff who write case reports to go through its research ethics committee to ensure this would never happen again. "I can only apologise profusely from an organisational point of view that strong enough systems were not in place to have prevented this from happening," she wrote.
Internal hospital review
Both doctors, in their correspondence with the Medical Council, said they were cooperating with an internal hospital review relating to the publication of research and case reports. Mayo University Hospital did not respond to questions about its internal review or whether specific guidelines had been developed for case reports.
A spokeswoman said the hospital deeply regretted the necessary consent was not obtained before publication and was “extremely sorry that this arose and the distress that it caused the family involved. The hospital manager has written to and met a member of the family and has apologised for the failings that led to the publication of this document without the necessary consent and which no doubt added greatly to the family’s upset.
“Saolta University Health Care Group employees have a clear responsibility to maintain patient confidentiality, including all types of documentation information relating to our patients. The group reminds staff on a regular basis of their responsibilities in this regard.”
Kennedy says she is still left with more questions than answers
In a statement through his lawyers, Dr Robertson, who is now working abroad, expressed his condolences to the Kennedy family but said he was unable to comment on the matter due to confidentiality. Prof Kevin Barry, consultant surgeon at Mayo University Hospital, did not respond to The Irish Times.
Everyone involved in this case – from the two surgeons to the hospital, from the publisher to the Medical Council – agree that consent should have been obtained, but was not. Despite this, Kennedy says she is still left with more questions than answers. Chief among them: why was this failure not considered sufficiently serious?
“It’s my job to protect Oisín,” she says. “It was my job to protect him when he was alive and it is still my job to protect him now. The doctors should not have published confidential medical records of a child without parental consent. It’s that simple. And yet, as far as I can see, there is no deterrent to stop this from happening to someone else.”
A spokesman for the Medical Council said it did not comment on individual cases.
