An unfortunate revision

Clare Matheson says she is 'totally sick to think that the character assassination has started all over again'. Photo / Richard Robinson

It was the last thing Clare Matheson needed. A new book claiming the "unfortunate experiment" begun in 1966 at National Women's Hospital was neither an experiment, nor unfortunate.

Recovering from major hip surgery which prevented her from attending the funeral of a friend of 40 years, Matheson was already feeling down.

"I'm feeling pretty ratshit anyway and then this, on top of it. I'm not a spring chicken any more." But, at 72, she is still a battler, and still able to have a laugh when she contemplates confronting the book's author, Linda Bryder. "Yes, great idea, says she, shaking in her shoes."

But she is annoyed that 21 years after the inquiry into what happened to Matheson and other women at National Women's, a revisionist history is being proposed.

"I am totally sick to think that the character assassination has started all over again. I'm tired of being accused of being a liar."

Matheson is a key figure in the saga - one who was both experimented upon and who bravely spoke out to Sandra Coney and Phillida Bunkle who lifted the lid on the unfortunate experiment in a Metro magazine article in June 1987.

Matheson's been praised, but has also taken a lot of flak for her stand. To this day a group of doctors remain incensed at what she exposed and the changes in medical practice that followed.

But what really makes her angry is Bryder's contention that Dame Silvia Cartwright, who presided over the seven-month inquiry into the treatment of cervical cancer at National Women's Hospital, got it wrong.

That Cartwright was taken in by a feminist agenda.

"What upsets me is that any time women speak up and do something for women it's called a feminist conspiracy. This was about getting justice - that is all it was."

But Matheson is not afraid to tackle Bryder head-on - especially about references in her book, A History of the 'Unfortunate Experiment' at National Women's Hospital, which are patently wrong. Bryder contends that treatment Matheson and other women received at the hands Dr Herbert Green wasn't so bad and that in the context of the times, and the outcome, she was well looked after.

Bryder blithely says, on page 65: "Matheson went on to have four children." In fact, she has three children. Two were born before she first went to National Women's in 1964 - referred there by her GP because of an abnormal smear test following a miscarriage. Her third child was born in 1966.

But that was just the beginning. Between 1964 and 1979, Matheson visited National Women's 44 times - visits involving internal examinations, smear tests and colposcopies, and six admissions involving general anaesthetics and surgery. As Bryder points out, Matheson was discharged in 1979 after a series of normal smear tests. She omits to say that there was a histology report from a curette which showed abnormalities.

"The histology report is somewhat surprising," Green wrote in her clinical file, but discharged her anyway. Her last curette had revealed "fragments of carcinoma devoid of underlying stroma".

What Green had done was to leave Matheson "sitting on a time bomb" as a specialist later told her. Six years after her discharge, the abnormalities had progressed to invasive cancer. Matheson is flabbergasted Bryder seems to think this is reasonable treatment.

"I feel that Bryder's total insensitivity is revealed in making light of a condition which resulted in 36 hours flat on one's back with caesium rods wedged in one's cervix, to be followed six weeks later by radical surgery, a Wertheim's hysterectomy - the removal of part of my cervix, uterus, lymph nodes and ovaries. But, hey, no big deal is it Linda?"

Bryder also argues that Green's conservative "wait and watch" approach to abnormalities known as carcinoma-in-situ (CIS) was good for women because it meant they weren't exposed to the risks of cone biopsies which could lead to fertility problems.

But, in the process of watching and waiting, Green was performing lots of diagnostic biopsies to check for invasive cancer.

What Green seemed unaware of was that the multiple biopsies were causing scarring of Matheson's cervix which was was putting her at risk and masking her smear test results.

MATHESON wants to ask Bryder where she got her information - especially details about how her tumour was apparently "so small and localised that it was completely obliterated by the radiation".

That was news to Matheson, and was not in her medical file. Who, she wondered, had - in breach of the Privacy Act - been discussing minute details of her medical history? But when she tried to contact Bryder, the latter refused to speak to her.

Bryder didn't want to speak to the Herald either. "Having already given two extensive media interviews, [the Listener and Radio NZ's Kim Hill] Linda does not wish to give any further interviews," replied Christine O'Brien, from the book's publisher, Auckland University Press .

"She approached the complex issue of the 'unfortunate experiment' as a professional medical historian and is not a participant in this debate. Now that her book is out she prefers to let her published findings, backed up by rigorous research, speak for themselves."

Eventually, Bryder agreed to answer some questions by email. We wanted to know how an Oxford-educated historian, who had been given a $345,000 Marsden Fund grant to research women and health in New Zealand, 1945-2000, with a special emphasis on National Women's Hospital, could make such fundamental errors.

And why, when the medical file was available to her, via Matheson's own book Fate Cries Enough - listed in Bryder's bibliography - she hadn't cross-checked to primary sources.

Bryder admits she was wrong and apologises to Matheson "for the insertion in parenthesis about four children, which was my error". Bizarrely, she also apologises for the insertion to journalist Jan Corbett because that's who she got her information from (Sunday Star, 5 August 1990).

"This account was in the public domain in 1990 subsequent to the publication of Matheson's book, I simply summarised it. As Matheson did not comment on it in 1990, I assumed she did not take issue with it."

Assumed? Why not check with Matheson? And why rely on a journalist's report rather than a medical file? "It was a clinical decision to discharge her [Matheson] to the care of her GP and it was not for me to decide retrospectively whether or not clinical decisions were accurate."

Surely research is supposed to show what is accurate? "My point is that it was a clinical decision and not the result of negligence or disregard for her welfare ... I do not see anything contentious about her 1979 discharge to the care of her GP."

Research can be blind. Faculty of Law Associate Professor Jo Manning, who specialises in medical law policy and ethics at Auckland University, believes what happened at National Women's was a case of investigator bias on the part of Dr Green.

"There is a phenomenon where an investigator interprets the results in terms of what he or she hopes or expects to see. It can be very dangerous. It's a loss of objectivity."

She says Green wasn't being deliberately evil. "It was a case of blindness, perhaps even obstinate blindness. He just refused to reassess his theory in light of the mounting evidence inconsistent with it."

Manning disagrees with Bryder's view that Judge Cartwright got it wrong. During the inquiry Green argued his "wait and watch" approach to CIS was conservative treatment.

"A key plank in his defence was that this was conservative treatment, not an experiment," says Manning. He candidly admitted in his writings, however, that it was a research study to test a theory.

Bryder argues that because there were not two groups of patients in a randomised controlled trial, there was no experiment at all, no research component to Green's 1966 proposal for the treatment of CIS.

"It's a complete non sequitur," says Manning. "The judge didn't make that mistake. She knew there weren't two groups." By the time of the inquiry, Coney and Bunkle also knew about the error they had made in their article about Green dividing the women he treated into two groups.

Manning quotes from page 63 of Cartwright's report: "Green's 1966 proposal was not a randomised control trial, but it was experimental research combined with patient care." And from page 65: "Green himself eventually conceded that his management of the patients was a research programme into the natural history of CIS."

IN her report, Judge Cartwright found Green's study was unethical for two reasons. First that it was dangerous to patients because it presented them with unacceptable risks - the risk being progression of CIS to invasive cancer. And secondly because none of the patients knew that they had been included in his research study and freely agreed to participate.

Bryder says it's wrong to portray the patients as defenceless victims - that that is a disrespectful way of looking at women of the past and that some were active participants in their care.

However, Manning says, "How could they be active participants in their care, without basic information about their condition, and without the knowledge they were being included in a study pursuant to which they would receive unconventional treatment which was risky to them?"

She agrees with Bryder that informed consent wasn't a developed concept at the time, but points out, as did Judge Cartwright, that the Declaration of Helsinki had been developed in 1964. "The Helsinki declaration requires full explanation and freely given consent to clinical research combined with professional care and that's what's Green's study was."

Bryder also argues that it's wrong to ascribe changes in the doctor-patient relationship to the Cartwright Report - that change was already afoot with the rise of feminism, particularly in women's health .

"I agree with that," says Manning. "It's just that, in a way, the Unfortunate Experiment was a high-water mark illustration of what needed to change. It fed into the changes taking place and it probably accelerated change."

Otago University Medical School epidemiologist Charlotte Paul, who was a medical adviser to the Cartwright Inquiry, says Bryder's book seems muddled between lesser and greater degrees of pre-cancerous abnormalities of the cervix.

Right up to the present day, there is uncertainty about the right treatment for minor abnormalities because they often regress, especially in young women. "But CIS is at the far end of the spectrum of abnormalities before cancer. In the mid-1960s it was the main abnormality that was being treated. It was the convention at that time to treat those."

She agrees with Bryder that it was an open question at that time whether cervical screening was effective - that the jury was still out on whether most cases of invasive cancer started with a pre-cancerous phase which lasted long enough to be detected by screening. The Cartwright Report put the date where a consensus on the effectiveness of screening was starting to emerge as 1977. "We now know absolutely that's the right thing to do and we're saving hundreds of lives," says Paul.

The minutes of the 1966 meeting at which Green's "wait and watch" protocol was agreed said "his aim was to attempt to prove that carcinoma-in-situ is not a pre-malignant disease." Bryder makes much of Green's explanation to the Inquiry that the lay person taking the minutes had omitted the word "invariably" before "pre-malignant disease."

Paul says the point is discussed in detail in the Cartwright Report which points out that the insertion would have actually made the protocol much worse. "To disprove that hypothesis, every women would have to have gone on to get invasive cancer. It made no sense at all and was rejected by Judge Cartwright."

Paul is also unconvinced by Bryder's argument that there was considerable international debate about whether to treat CIS, and that Green wasn't out on a limb in his views. She is particularly concerned about Bryder's use of misleading quotes.

On page 24, Bryder introduces the 1966 proposal to follow without treatment women with CIS. She then says: "This protocol would have met with the approval of Professor Per Kolstad from the Norwegian Radium Institute, an international authority on CIS and cervical cancer ."

She quotes him writing in 1970: "By the complementary use of cytology, colposcopy and histopathology, the risk of overlooking invasive carcinoma of the cervix is minimal." This sounds as if he is advocating following women without treatment, as Green did.

"He was not," says Paul. What she omits is Kolstad saying: "We believe that an individualised type of conizsation is sufficient therapy in the majority of cases." Paul says it's clear the protocol would not have met Kolstad's approval, which he made plain himself as an expert witness to the Inquiry.

On page 12, Bryder refers to New York pathologist Dr Leopold Koss commenting in 1963 on disappearing carcinoma-in-situ and asking, "When is cancer not cancer?" Bryder quotes him saying "the approach that seemed most reasonable under these circumstances was a long-term follow-up study with minimal or no treatment".

What he's actually doing, says Paul, is reporting on a study he started at least 10 years earlier. Koss' conclusion reads: "Carcinoma-in-situ is a lesion of the cervical epithelium that beyond doubt is a precursor of invasive cancer ... Spontaneous disappearance of carcinoma-in-situ apparently does occur, but is an extraordinarily rare event." As Paul points out that was in 1963 - three years before Green's unfortunate experiment.

* A History Of The 'Unfortunate Experiment' At National Women's Hospital by Linda Bryder, Auckland University Press, $45.
* The Cartwright Report: Essays on the Cervical Cancer Inquiry edited by Jo Manning, Bridget Williams Books, to be released September/October - more information at www.bwb.co.nz.

THE CARTWRIGHT INQUIRY: A WATERSHED IN WOMEN'S HEALTH

In June 1987 Metro magazine, published an article called "An unfortunate experiment at National Women's Hospital" by Sandra Coney and Phillida Bunkle.

The "unfortunate experiment" phrase was borrowed from Professor David Skegg, an epidemiologist at the University of Otago Medical School, who used it first in a letter written in 1986 to the New Zealand Medical Journal.

Coney and Bunkle's article reported that Dr Herbert Green at National Women's Hospital had been withholding conventional treatment from some patients with carcinoma in situ (CIS) of the cervix, in order to prove his theory that CIS was a harmless disease which hardly, if ever, progressed to invasive cancer. And that he was carrying out research on his patients without their knowledge or consent.

The starting point for Coney and Bunkle's investigation was a paper by Dr Bill McIndoe and Dr Jock McLean, with Dr Ron Jones, published in 1984, analysing the data of patients at National Women's with CIS between 1955 and 1976, including those who had received this "conservative" treatment.

Reaction to the Metro article was spectacular - by June 10 terms of reference had been published for an inquiry to be headed by Judge Silvia Cartwright. The inquiry ran from August 1987 until January 1988.

Evidence was received from 58 witnesses, including medical experts from the USA, Britain, Australia, Japan and Norway. Twelve patients or former patients and two relatives of patients gave evidence and Judge Cartwright had private interviews with a further 70 patients, four nurses, and two GPs.

Nearly 1200 patient files were reviewed, 226 of them produced as exhibits. In total, 5657 pages of transcript were recorded and made available to counsel, the parties and the media.

On 29 July 1988, Judge Cartwright submitted her report concluding that as early as 1967 the dangers of the trial, in terms of missed and therefore delayed diagnoses of invasive cancer, should have been apparent.

She also found that Dr Green's theory was wrong and his management of patients at the relevant time inadequate.

The Cartwright Report's recommendations set the agenda for much of the legal and regulatory change that followed in the 1990s and beyond. That included changes to the Human Rights Commission Act to provide for a statement of patients' rights, including the right to give informed consent, and the appointment of a Health Commissioner.

AT THE HEART OF THE MATTER

Carcinoma-in-situ (CIS) is a lesion on the surface of the cervix, and at the time it was presumed to be pre-invasive or a cancer precursor. The cervical smear test, or Pap test, had been introduced into New Zealand in the 1950s to detect this lesion and to treat women in the expectation of preventing cervical cancer.

It was always a somewhat controversial test because it relied on the expertise of the smear reader - the cytologist - and there could be inaccurate, especially false negative, results.

The prevailing medical view of CIS in New Zealand and overseas in 1966, when Dr Herbert Green put his proposal to the Hospital Medical Committee, was that it was a precursor of invasive cancer.