Pub­li­ca­tion of re­port on late boy’s can­cer caused fur­ther heart­break

The pub­li­ca­tion, with­out con­sent, of a re­port on her late son’s can­cer caused fur­ther heart­break for a griev­ing mother

The Irish Times - Tuesday - Health - - Front Page - Beau Don­nelly

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.

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: 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 doc­tor­pa­tient 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 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 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.

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. Olga 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.

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.”

In a let­ter to the Kennedys, the gen­eral man­ager of Mayo Univer­sity Hos­pi­tal, Cather­ine 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 and the spe­cific guide­lines de­vel­oped for case re­ports.

In a state­ment, 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.”

It’s wrong that when a 12-year-old can­cer pa­tient’s right to con­fi­den­tial­ity is ig­nored, the most you can ex­pect is ‘sorry’

PHO­TO­GRAPH: MICHAEL MC LAUGH­LIN

Olga Kennedy with a pic­ture of her late son Oisín.

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