A History of the “Unfortunate Experiment” at National Women’s Hospital
Auckland University Press, $45.00,
The Cartwright Papers: Essays on the Cervical Cancer Inquiry, 1987-88
Joanna Manning (ed)
Bridget Williams Books, $39.99,
July 2008 marked the 20th anniversary of the Report of the Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital and into Other Related Matters, known as the Cartwright Report. One of Judge Silvia Cartwright’s most important recommendations was the appointment of a health and disability commissioner. Current commissioner Ron Paterson (2008) pointed out last year that
patient safety inquiries across the world consistently identify the same problems: health care below promulgated standards; lack of quality-monitoring processes; patients, family members and concerned staff being ignored and excluded; whistle-blowers being vilified; and persistent deficiencies in teamwork, systems and communication.
Why are the lessons of such inquiries so hard to learn? If the stakes are high enough, said Paterson, “the learning … will be hotly contested”.
The latest challenger is a historian. Bolstered by an extensive array of footnotes and references, Linda Bryder of the University of Auckland argues in A History of the “Unfortunate Experiment” at National Women’s Hospital that, misled by her own ignorance of medical matters and by feminist determination to break medical power, Judge Cartwright got it completely wrong, because the unfortunate experiment was nothing of the kind.
Carcinoma in situ (CIS) is diagnosed by a tissue biopsy. By the mid-1960s, Professor Herbert Green had come to believe that CIS was rarely the precursor of invasive cancer. Exactly why has never been fully explained. The inquiry concluded that Green set out, with his superiors’ approval, to prove his theory by observing women with persistent CIS through repeated smears and biopsies over a long time, without informing them or obtaining their consent.
If he was right, there would be no need to remove CIS. Nor any point setting up national cervical screening programmes. But if he was wrong, a significant percentage of the women would go on to develop invasive cancer.
By 1970, it should have been clear that this was precisely what was happening. But Green simply reclassified some of the women who developed invasive cancer as having had it all along (in other words, it had originally been “missed”). Removing them from his data hid the true rate of progression and enabled him to go on producing statistics that supported his theory. In 1974, he reported (and Bryder uncritically repeats) that only 10 of 750 cases had apparently progressed to invasion, and eight of these were doubtful. By then, colposcopist Bill McIndoe had identified 39 cases of invasion.
Bryder argues that Green’s views and approach were not out of step with expert opinion at the time. He was not conducting any kind of experiment, merely practising “conservative treatment” in order to avoid unnecessary surgery and preserve fertility – an aim which, she says, feminists should have supported. Bryder ignores much of the Cartwright Report itself, let alone the evidence behind it. She chose not to interview any surviving participants, and so failed to clarify a number of complex issues.
The Cartwright Papers: Essays on the Cervical Cancer Inquiry, 1987-88, on the other hand, includes contributions from Green’s patient Clare Matheson; Ron Paterson; Professor Charlotte Paul, one of the inquiry’s three medical advisers; Sandra Coney, who (with Phillida Bunkle) wrote the Metro article leading to the inquiry; and Dr Ron Jones, one of three authors of a 1984 article based on Green’s data, which showed carcinoma of the cervix had a significant invasive potential, plus other specialists. Editor Associate Professor Joanna Manning specialises in medical ethics and medical law and is also at the University of Auckland.
Paul details “factual scientific matters that demonstrate the systematic errors in Bryder’s book” (such as confusing cytology and histology). Bryder, she says, fundamentally misrepresents the nature of medical knowledge and practice. Coney particularly notes Bryder’s dismissal of the women concerned:
Review of the files by the Inquiry staff resulted in the need to recall over 130 women. A number of them had already been treated away from the hospital, but over 50 accepted a review by an independent colposcopist. Newly arrived in New Zealand, he later said he had never seen such mutilated genital organs. Repeated biopsies and other procedures had caused dreadful internal scarring for many women.
In her determination to exonerate Green and discredit those who called him and his superiors to account, Bryder uses techniques running oddly parallel to ploys Green himself used in his papers, his rebuttal of criticisms and his inquiry evidence. These include selective, misleading (and much repeated) quotations from international experts; misleading use of statistics and obvious factual
errors; and ignoring crucial but inconvenient material, including important statements by Green himself. Pathologist Jock McLean’s 1973 challenges to Green’s diagnoses, for example, are partially quoted only to be brushed aside.
Like all the inquiry’s critics, Bryder homes in on the 1984 paper by McIndoe, McLean, Ron Jones and Peter Mullins. It was this that prompted Coney and co-author Phillida Bunkle to begin researching the 1987 Metro article that led to the inquiry. Nevertheless, as both Paul and Coney stress (but Bryder never acknowledges), the report’s conclusions were based not on the paper or the article, but on the examination of case histories recorded in more than 1200 patient files, to which Bryder had no access.
In his essay, Jones (the only surviving 1984 author), explains that he helped write the paper partly because of one such case:
one of Green’s patients with untreated carcinoma in situ of the vulva was referred to me (with preceding clinical photographs). Since I did not work in Green’s team, I had no contact with the women in his experiment. But here I could see with my own eyes exactly how a cancer precursor was allowed to progress to cancer. Despite radical surgery, the poor woman died – following years of observation and neglect.
In order to study the natural history of CIS, as Green set out to do (and repeatedly stated), its complete excision had to be avoided – hence the huge increase in risk for the women he studied. Ironically, Green’s study provided conclusive proof that his theory was completely wrong. Those left with persistent CIS were almost 25 times more likely to progress to invasive cancer than those without it.
Despite these appalling results, writes Jones, there was a “complete absence of visible response by the senior medical staff or the wider profession” to the paper. Without Coney’s and Bunkle’s three years’ work and follow-up by journalists Paul Smith and Peter Kingston, there would have been no inquiry and no public knowledge. Still, a few passages in the The Cartwright Papers left me with an uneasy feeling that medical professionals who back the inquiry’s findings even now tend to blame lay “outsiders” for some doctors’ adverse reactions to it.
In any case, seeing how the media and institutional public relations teams now operate, writes Coney, the 1987 article that sparked the inquiry probably could not be researched or published today. Both were the products of “a historic confluence of factors that no longer exist”.
It is because CIS is indeed a cancer precursor that the screening programmes Green and others so opposed can prevent many (though not all) cases of invasive cancer. Spurred by the report, with hard work by activists as well as supportive professionals, and despite many obstacles and failings, a national programme was eventually set up. Since 1986, as David Skegg has pointed out, new cases per year have fallen from 235 to 157 (in 2004-07), and deaths per year have fallen from 101 to 59 (in 2004-06).
Estimates are that screening is now preventing at least 70 per cent of cervical cancer cases that would otherwise be occurring in New Zealand.
Beyond cervical cancer itself, Judge Cartwright’s greatest contribution to health care in New Zealand was, as Coney notes, “to make the women’s experience central and to shape her recommendations so that they would protect and empower patients in the future”. This approach resulted in a profound shift in the status and rights of patients.
Could such an “unfortunate experiment” happen again? The broad conclusion is that today’s safeguards make it unlikely, but not impossible: “[S]ystems alone, however well designed and efficient, cannot ensure ethical behaviour … the ethical conduct of research depends ultimately on [researchers’] integrity.” So we should pay careful heed to Matheson, the patient who, by being willing to have her case publicised, made possible the Metro article and therefore the inquiry, when she says:
I do not think information derived from this data [Green’s “experiment”] should be published or used in any way without clear acknowledgement of the price that was paid for it. The women and their families who paid – and are still paying – the price deserve that much respect. The abomination that took place at National Women’s Hospital should never be forgotten.
Anne Else is a Wellington writer and reviewer.