Doctors in Denial: The Forgotten Women in the “Unfortunate Experiment”
Ronald W Jones
Otago University Press, $40.00,
My first acquaintance with National Women’s Hospital was as a final-year medical student in 1968. It was an unpleasant experience of an utterly alien culture, disturbingly hostile to women in general, with women medical students being no exception. Just how indifferent the hospital medical profession was to the wellbeing of those in its care did not become publicly apparent until the publication of Sandra Coney’s and Phillida Bunkle’s Metro piece “Unfortunate Experiment at National Women’s” in 1987, which led to the Cartwright enquiry the following year.
In the ensuing 30 years, there have been various attempts to dispute Cartwright’s findings, to exonerate Professor Herb Green and other clinicians, and to assert the view that Green’s approach to his study of the management of cervical carcinoma-in-situ (CIS) was in keeping with the ethical standards of the times. Similarly, authority figures, such as fellow doctors and senior academics, have claimed to have been unaware of the consequences of Green’s study.
Ronald Jones was appointed consultant at the hospital in 1973. At that time, Green’s study had been in progress for seven years. Green contested the almost universally held view that CIS was a condition which was likely to evolve to invasive cancer. He maintained that CIS was a benign lesion which did not warrant conventional treatment with hysterectomy or cervical cone biopsy, but required observation and serial cervical smears and biopsies only. That the untreated patients with CIS would have had other options was not discussed with them, nor were they alerted to the fact that they were part of an academic study of untreated CIS. They were monitored, but not treated, as Green set out to prove that CIS was benign.
The person most alert to the consequences of this approach to CIS was the cytologist and colposcopist Dr Bill McIndoe. He examined the serial smear and biopsy specimens and became aware that increasing numbers of women were developing invasive carcinoma. He was a diffident man, but frequently expressed his concerns to Green, who brushed him aside, as did the academic head Professor Dennis Bonham and other academics and authority figures. In papers and at international meetings, Green asserted that the chance of CIS progressing was no greater than 5 per cent. However, the follow-up period was short (invasive carcinoma may take many years to develop), and McIndoe was concerned that Green was reviewing pathology specimens and altering their interpretation, which afforded the opportunity to deny progression of the lesions.
McIndoe and his pathologist colleague Dr Jock McLean discussed their concerns with Jones. Consequently, they reviewed the relevant clinical and pathology data in a 1984 paper published in Obstetrics and Gynaecology, “The Invasive Potential of Carcinoma in Situ of the Cervix”. The paper showed that women with normal cervical smears had a 1.5 per cent chance of developing cancer, whereas, of those with persistently abnormal smears, 22 per cent had developed cancer. Some had died. This incontrovertible proof of the malignant potential of CIS was not embraced by clinical, academic or administrative staff at National Women’s Hospital. In fact, the experiment continued and, instead of demanding its cessation, many of Jones’s colleagues ostracised him.
How could medical people ignore the evidence that patients in their institution, were being harmed by an unconventional, unconsented, experimental approach to a clearly premalignant lesion? How did the authors of the 1984 paper fail to convince their colleagues that the trial of observation only, without definitive treatment, should be stopped?
The answers seem to lie in power, position, hierarchy, loyalty and imperfect advocacy. Jones was, at the time, a junior consultant with little power or influence, and tenure that was likely to be abruptly terminated if his seniors found him wanting, He was preoccupied with the calamity that had befallen his wife who, in her mid-40s, had recurrent breast cancer from which she died. Further, his co-authors McIndoe and McLean were laboratory-based doctors, not clinical, and therefore low in the hospital hierarchy. Then there are the personalities of the main protagonists. Green himself, an overbearing and ambitious man, had retired in 1982, but his influence remained, and many of his colleagues remained loyal to him. The academic head, Bonham, seemed more concerned for the reputation of his hospital than the well-being of these patients. Many of the senior medical staff held stated positions similar to that of Tony Baird, a highly influential doctor who strongly supported Green. Others, such as Mont Liggins, turned a blind eye. The administrators, from the local medical superintendent to each of three serial superintendents-in-chief, declined to intervene. Patient-safety considerations did not seem to be part of their deliberations.
It was Coney and Bunkle, not the 1984 paper authors, who were the effective whistle-blowers, when their Metro article led to the Cartwright Inquiry which has had such a huge influence on medical practice. However, even since that inquiry, many gynaecologists, academics and the historian Linda Bryder have attempted to revise Cartwright’s conclusions. This revisionism has impelled Jones to set the record straight now. He does so skilfully. The book is meticulously referenced, engagingly honest, and a rewarding read.
This story will only end when there has been an unqualified acceptance that there was an experiment that resulted in unnecessary suffering and death and an unqualified apology. It can have no ending while denial exists. The obdurate and continuing refusal of influential sections of the medical profession to acknowledge the experiment and it consequences has served only to prolong divisions within the profession and the community.
He makes a strong case for the delivery of an apology to the survivors and the families of those who died. The Gynaecologists College has apologised at the launch of this book. An apology from the Auckland District Health Board is planned. Whether at this late date it will be welcomed by those affected is yet to be seen.
Rae Varcoe is a Nelson poet and reviewer.