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Cartwright Inquiry follow-up
Former National Women's doctors disciplined Two former National Women's Hospital doctors have been found guilty of conduct unbecoming a medical practitioner for failing to express sufficient concern over Professor Green's policy of conservative management of carcinoma in situ of the cervix 'thus allaying concerns' of the hospital management. Dr Bruce Faris and Professor Richard Seddon were two members of a three-person committee established by the Hospital Medical Committee at NWH in 1975 to look into particular cases of Professor Green's. This followed complaints from two other hospital doctors the pathologist, Dr Jock McLean, and the colposcopist, Dr Bill McIndoe. The three-person committee delivered a report Dr McLean graphically described as a 'whitewash'. It did not recommend that anything should happen about the women. Instead it decided that 'all the staff members involved have acted with personal and professional integrity'. It chastised the doctors for allowing 'differences of professional opinion' to develop into 'conflicts'. It did not recommend termination of Dr Green's experiment as to do so, it said, was outside its terms of reference. Instead it said that 'the effective continuation of this trial depends upon the staff members concerned subjugating personality differences in the interests of scientific inquiry'. The complaint against Faris and Seddon was laid in1992 by the New Zealand Medical Association. It was heard in early 1993, but the finding was challenged by Dr Faris who took it first to the Medical Council and next to the High Court. This last action was recently withdrawn allowing publication of the findings. An Auckland women has won an appeal against the refusal by ACC of a payment for loss of bodily function resulting from her treatment in the R Series trial of Prof Herbert Green at National Women's Hospital in 1980. In the R Series, women with invasive cervical cancer were randomly allocated to one of two treatment groups designed to see which was the best treatment for cervical cancer: internal and external radiation or internal radiation and surgery. No consent was sought to their involvement in the trial. The R Series ran from 1972 to 1982 and 200 women were enrolled in that time. The results of the series were never published although an unpublished interim report was prepared by Dr Liam Wright. This showed that while there was little difference in survival rate, there were striking differences in complications. Women with radiation alone faced bowel damage, bladder damage and permanent irreversible injuries to the vagina. The Auckland woman, now aged 54, said she was over-treated during the trial. She had radiation and surgery which caused her to become sterile and have an early menopause. She also has bladder and bowel problems. In 1993 she received the maximum lump sum payment ($1O,000) for pain and suffering, but was declined compensation for loss of bodily function. An ACC Appeal Authority adjudicator said it was clear she had suffered some loss or impairment. The maximum amount she could receive under this category is $17,000. The ACC now has to assess how much compensation it will award. In 1992 Women's Health Action decided to mark the fifth anniversary of the release of the Cartwright Report by publishing a book of writings assessing progress. On each former anniversary, we had published a brief report; the five year mark presented the opportunity to present something more substantial. And so Unfinished Business - Writings on the aftermath of 'the unfortunate experiment' at National Women's Hospital was born. A number of women who had been involved in implementation of the report were asked to document their experiences, providing an analysis from their own personal point of view.
The picture which emerges from these collected writings is of enormous energy which has gone into supporting the implementation of the recommendations. Women's health groups desperately wanted to see action and many women acted as consumer representatives on the various committees that were set up. By and large, these women report disappointing experiences, with real progress blocked by medical interests. In other cases, the bureaucracies blocked change. Pauline Kingi's experience with the Auckland Area Health Board Ethical Committee, Helen Clark's experience with the Department of Health and Sandra Coney's on the Expert Group on cervical screening illustrate this reaction. Only the Pacific Islands women report real change - the Cartwright Report, they say, empowered Pacific Islands women to put their concerns on the health agenda and get some progress on issues on which they had been battling for years, such as interpreter services. In an introductory chapter Sandra Coney discusses why the progress has been so slow. She pinpoints three causes:
Women's Health Action unveils plaque at National Women's Hospital On 18 September, Women's Health Action unveiled a plaque at National Women's Hospital in memory of Dr Bill McIndoe, cytologist and colposcopist at the hospital 19631983, and Dr Malcolm McLean, pathologist-in-charge at the hospital from 1961-1988. Dr McIndoe died in 1986 and Dr McLean, early in 1993. The ceremony was attended by family, friends and colleagues of the two doctors, women from women's health groups, the manager of NWH and people who had been involved in the Cervical Cancer Inquiry. Dr Ian Ronayne spoke of behalf of the families; Noeline McIndoe and Ailsa McLean also spoke. A pohutukawa tree was planted by the two women, who then unveiled the plaque. Ailsa McLean said that it was very appropriate that the chosen tree was a pohutukawa, as it signified resilience and endurance, even when it was buffeted by the elements. Both women mentioned the stress on their families during the years their husbands tried to get action within NWH over the cervical cancer experiments. The tree and plaque are placed beside a path in the hospital grounds, near what used to be the colposcopy clinic where Dr McIndoe worked, and overlooked by Dr McLean's pathology laboratory. Speaking for Women's Health Action, Sandra Coney outlined the immense help she and Phillida Bunkle had received from Jock McLean, who told them 'the inside story of what had happened at NWH'. The Mclndoe family also allowed access to many of Dr Mclndoe's memos in which he had meticulously recorded his and Dr McLean's efforts to get help for the women at the hospital with untreated CIS. Those memos became a critical body of evidence at the Cervical Cancer Inquiry, and contributed significantly to the outcome of the inquiry.
Up-date on the Cervical Screening Programme The good news is that the cervical screening register is included in the Health and Disability Services Bill which has been introduced into parliament, which means the government is committed to it. And it includes an "opt-off" register. This means that all smear results will automatically go on to the register unless a woman chooses to opt out of the system. Doctors or other providers will be required to inform women of their right to opt off. A register which includes a large number of women is essential if the National Cervical Screening Programme is to operate effectively. A coverage of at least 80% is required. At present, only about 12% of women are enrolled on the register nationally. The current screening programme has an "opt-on" register. This means that only those who are informed of the register, and who sign a form will have their smear results included. Some doctors do not offer women the chance to go on to the register because they believe that their own systems are adequate. A survey in Auckland this year showed only 600 of 1000 GPs in the region were enrolling women. Although doctors, generally, support the opt-off system because of the reduced paper work, the real impetus behind the government introducing the "opt-off' system has come from pressure from women and women's groups. The National Cervical Screening Programme aims to reduce the number of women who develop or die from cervical cancer. The register is confidential. It provides a quality control and a safety net for women.
More than 100 women die annually from cervical cancer, and 200 contract the disease. There are signs that the disease is on the increase. What is not known about the screening programme, is where and how it will fit into the new health system and whose responsibility it will be. The Department of Health and Area Health Boards run it currently. Cervical Cancer Patients Apply for Accident Compensation Auckland solicitor, Linda Kaye, filed 28 claims for accident compensation on behalf of women who were part of The Unfortunate Experiment at National Women's Hospital. The deadline for claims, imposed by the 1992 Accident Compensation Act, was 30 September, 1992. Women who were subjected to 'treatment' without their consent, and those who suffered injury could be eligible, she said. There are several categories of compensation, she said. They include lump sum compensation for pain, suffering and loss of enjoyment of life, earnings-related compensation, and reimbursement of other economic loss. The Cartwright Report - Four Years On by Sandra Coney These are excerpts from a report prepared for August 5. The Cartwright reforms are threatened by the restructuring the health system being carried out by the National Govemment. (See earlier sections covering the Health Commissioner Bill and the Medical Practitioners Bill.) The National Women's Hospital Women Some of the women who were recalled to National Women's Hospital as a result of the Cartwright Inquiry seem to have been abandoned by the Auckland Area Health Board. User part-charges were introduced in February, 1992 and the issue arose as to whether any of these women would be liable for such charges. The board recently decided that the cost of future check-ups and any treatment would be "the responsibility of the individual woman." In other words, the board contends it has no further responsibility towards these women, financial or moral. The board has also taken the view that, having paid compensation to some of the women following legal action, it does not regard itself as having any further obligation to these women. Following protests from Fertility Action and others, the board has said it will consider payment on a "case-by-case" basis. However, without some kind of public accounting for its decisions, it will be difficult to know how this operates in practice. Ethical Committees Ethical committees have been reconstituted under Department of Health guidelines and exist in most parts of NZ. There is now a greater lay involvement and most committees have more formal application requirements for research. However, there are considerable problems. Firstly, the department has no regular system for monitoring or evaluating their effectiveness in protecting patients' rights, and there are considerable regional variations. Public accountability is a major issue. Secretiveness and a willingness to serve the researchers' needs first have been the hallmark of these committees, some of whose members see their role as to facilitate medical research. Some committees, such as in Auckland, would not make public the names of approved research projects, nor supply minutes of their meetings or approved research protocols. (This situation has been gradually altering following protests, but is still unresolved.) When the area health boards were dissolved, public assessibility to ethical committees worsened. Previously, approved research would enter the public record via board meetings. No longer, and general managers of boards give the final approval for research. There is no on-going audit of the ethical standards in research projects. Fertility Action recently heard from a patient, who was approached on admission during a major heart attack, to take part in a double-blind drug trial. The infommation provided and the process of asking did not meet the criteria laid down in international and local protocols for how consent should be obtained. Of grave concern is the approval given for some very contentious research projects, such as those using the drug Tamoxifen on well women, when similar trials have been criticised overseas. In Britain, the Medical Research Council has withdrawn from Tamoxifen trials similar to those going ahead in NZ. No community input has been sought in the process of evaluating these trials. (See the last newsletter.) Treatment Protocols Very poor progress has been made in developing treatment protocols, largely because of medical resistance to the existence of such documents. In Auckland, a working party to devise a "protocol for protocols" finally reached agreement, but so far, no treatment protocols have been developed. The only national protocol is still Abnormal Cervical Smears: National Consensus on a Treatment Protocol for Management which has recently been revised and re-issued. National Cervical Screening Programme Good progress has been made on the screening programme in the past year. (See above.) And, in addition, Christine Fletcher MP, has introduced a private member's bill for a Cancer Registry, aimed at reviving the existing but dysfunctional cancer register. With the reforms to the cervical screening programme, most of the elements needed for a successful programme will be in place. However, there are other threats. The restructuring of the health system, involves separating the funding and provision of health services, and the establishment of a Public Health Commission to oversee public health aspects of the health system. The cervical screening programme contains elements which cannot be so neatly separated. The register, eg, provides a health service to individual women, but also has the important public health role of allowing evaluation of the programme. There is also a critical national function in coordinating the programme, an office currently located within the Department of Health. It is currently uncertain whether these important ingredients of the screening programme can survive the health restructuring, simply because the programme does not "fit" the marketplace model of medicine. There is reluctance to retain any national health service functions within the department, and it is not dear whether the Public Health Commission's terms of reference will allow it to have more than an advisory and evaluative function. Health charges for Cartwright Inquiry 'recall' women Earlier in the year Fertility Action was contacted by the family of a woman recalled by Judge Cartwright. This woman now has cervical cancer and the family wished to know whether she would be expected to pay the new hospital part charges. We took this up with the Auckland Area Health Board and recently received a reply outlining board policy on the matter. The guidelines stated: ' At the end of two years during which the woman has no physical or cytological evidence of CIS-related abnormality, the possibility for the ongoing, life-long follow-up, and the treatment of any subsequently identified abnormalities is the responsibility of the individual woman. ' This means that only women who developed cervical cancer within two years of the recall, that is, by mid-1990, will receive free medical treatment from the board. The woman who prompted our inquiry would presumably be expected to pay. She had declined to attend for an independent check-up when recalled by the judge, saying she had had enough of the interminable examinations she had had over the years. Now suffering from advanced cancer, she will be outside the artificial two- year limit imposed by the board. The board's policy also means that other recall women, who are expected to have frequent check-ups, must in future pay for these themselves. Had they been adequately treated by the board's doctors in the first place, they would not now need such close surveillance. Fertility Action believes that all the recall women should be given lifelong free medical care. It is possible for cervical cancer to emerge many years after women appear to be 'cured'. It is possible that the repeated biopsies these women underwent could have 'buried' abnormal tissue, making smear tests somewhat unreliable. A letter has been sent to the Area Health Board from Fertility Action protesting the Board's decision and requesting a review of the policy. In early May, 19 women including 'Ruth', who had claimed damages arising out of the management of their carcinoma in situ and cervical cancer at National Women's Hospital, accepted an out-of-court settlement of $1,020,000. The first woman to make a claim, in August 1988, was Clare Matheson, also known as 'Ruth'. In her claim, she said that she had, been subjected to unnecessary procedures and to experimentation without her consent, and that she contracted invasive cancer as a result of negligent management of her condition. At the time, she urged other women in her position to sue too. All five defendants (the Auckland Hospital Board, the University of Auckland, Professors G. H. Green and D. G. Bonham, and the estate of the former superintendent of NationalWomen's Dr R. A. Warren) contributed to the sum. Dr Rodney Harrison, acting for the 19 women, said the women's claims had been due to be heard together in the High Court on May 18. The case could have taken 15 weeks. He said the settlement was fair and reasonable. And it had become vital that the women received compensation while they were still around to enjoy it, without further delays and the enormous expense and uncertainty of a defended hearing. Since 1988, one woman had died of cervical cancer, and another was now seriously ill. A number of other women continued to have major health problems, in many cases from the after-effects of their National Women's management. Dr Harrison said the settlement was significant, given the legal restrictions imposed by Accident Compensation legislation on patients recovering compensation for medical misadventure in the ordinary courts. It was likely that a number of the women would also lodge accident compensation claims. Fertility Action is pleased with this result. We are glad that the women were spared the ordeal of a fight through the courts, and from having to go through it all over again. Our spokesperson, Lynda Williams, told the media, 'The settlement is little enough compensation for the women. We hope that they will be able to use this money for something pleasurable for themselves. Although nothing can ever make up for what they were subjected to, the settlement is at least something positive for them.' Patient Advocacy service in Auckland The patient advocacy service in Auckland has been privatised and control now rests with the area health board. Tenders were called by the Auckland Area Health Board for parties who wished to manage the service and a contract was let late last year. Previously the PA was answerable to the Department of Health awaiting the appointment of a Health Commissioner. The existing PA, Lynda Williams, resigned her position at National Women's Hospital at the changeover. Two full-time and two part-time PAs have been appointed and are being trained. They will be placed at a number of Auckland hospitals. Further appointments will be made later in the year. The change in control of the service raises questions about independence from the board, given that complaints will often be about the board's employees and standards in the board's facilities. The superintendent of one hospital (not NWH) has already contacted the board wanting the new PA to be tightly controlled by the board. Because the PA is contracted to the board she 'should be subject to board policies and protocols, including contact with the media' as well as subject to the District Inspector under the Mental Health Act. Privatisation is another issue, with the possibility of less public access to information about management of the service. Legislation applying to local bodies, such as the Official Information Act, will not apply. Report on the Patient Advocacy Service (report on the review of the patient advocacy service at National Women's implemented as a recommendation of the Cartwright Report) This recent report has shown that maternity and gynaecology patients at National Women's and Green Lane Hospitals want a Patient Advocacy Service. A formal, independent evaluation of the service in the two hospitals by management and research consultants, Macky & Associates, says the service should continue. It found that patients who used the service were very satisfied, and that the improvements most asked for were increased advertising of the service, and the introduction of advocates in other hospitals. However, the study found that hospital staff were not so happy with the service, with many being openly hostile to both the service itself and the advocate personally, and that the complaints mechanisms of the hospitals and Auckland Area Health Board were not always satisfactory. The review was commissioned by the Auckland Area Health Board to see if the advocacy service was needed, how well it ' achieves what it is supposed to achieve,' and to offer direction and suggestions for the future. The Department of Health and the service, itself, helped determine the study's objectives. During the study, the advocate was observed, all related documents were analysed, interested parties and people who worked in the hospitals and dealt with the service were interviewed, and past patient clients, as well as a sample of patients who had not used the service, were surveyed by post. A Climate of Resentment Historically, the advocacy service was a direct recommendation of the Cartwright Report. Right from the start, the study found that it operated in an environment that was politically unstable, and full of resentment, the potency of which 'should not be underestimated.' Some medical staff claimed that the selection of the advocate was taken over by 'man hating' /"'doctor hating feminists' 'who simply selected one of their own.' Nurses, in particular, the study said, resented an independent patient advocate, who was also a lay person, operating in their physical territory. 'Unfortunately,' said the study, 'some early actions of the advocate served to reinforce and perhaps exacerbate the hostility, leading to a cycle where both sides had bad expectations of each other.' The political instability was created by the Government's delay in the creation of a Health Commissioner, and by the lack of any policy for patient advocacy services at the Auckland Area Health Board and the Department of Health. The advocate was also under pressure from various pressure groups. Macky & Associates had difficulty getting the health care providers (clinical, academic, students and administrative) to respond to the study. A previous attempt to formally survey staff produced only a 20% response rate. In this study, direct contact was made with 39 hospital personnel. Although this was a small and self-selected group, it was thought that the views expressed were indicative of 'serious dysfunctions' between the advocate and some hospital staff, and would almost certainly be held by other staff. Monthly reports by the advocate showed that 21 months after the service had begun, she had been unable to arrange a meeting with doctors to introduce herself and explain the service. The study thought that such a meeting held today, would probably be counter-productive. It found that many formal complaints had been made by staff about the service. Nurses who were prepared to respond were better informed about the concept of an advocacy service and saw the need for it, but some expressed concern about the 'interpersonal style of the advocate'. Observation of the advocate by the reviewer found that some of the advocate's 'non-verbal behaviour' could be perceived as aggressive. However, the advocate said she felt that she had a good working relationship with the hospital and board staff and that she was not aggressive. She also denied being anti-doctor and anti-male. After six months observation, the study found nothing to support these last two charges. Hospital staff, the report concluded, must bear some responsibility for the situation. It does 'take two to tango,' and the advocate was prejudged before she arrived, she was on occasion 'set up,' and she was a 'victim of oft-told stories by people who had never met her. What the Advocates Clients Thought The client/patients, themselves gave the advocacy service a clean bill of health. The study found clear evidence that it worked well for patients, and that there was a demand for it. 'The advocate's dedication to her job in the face of very difficult conditions must be acknowledged as a major factor in obtaining this level of success,' it said. The patients' response to the service was seen as the most important, the report said, as they should be the core focus of any patient advocacy service. And, in the end, they must determine whether it is successful or not. A total of 71.7% of client/ patients surveyed responded in time to be included in the study. It was felt that their response would be representative. The work done for patients by the advocate, according to her records, clearly involved patients' rights issues: access to medical records (41%), as well as informed consent, privacy and breaches of confidentiality, considerate and respectful care, and receiving full information about their illnesses in terms they could understand. While pamphlets about the service were readily available, the study noted that few wards or service areas had posters because many had been defaced by staff and removed. Most client patients heard of the service through the media. An additional survey of maternity and gynaecology patients of the two hospitals who were not clients of the service found that only one-third knew the service existed. Most of them saw a poster or brochure, or they were told of it by a nurse. The Views of Women who had not used the Advocate Although they had not used the service themselves, 60% of those surveyed thought there was a ' definite' need for such a service, and more than one-third saw a possible need for it. Only seven saw no need. (See below) Contrary to board publicity, the study said, its surveys of both patient groups indicated that ' serious problems' with the attitudes and behaviours of staff, and with the complaints procedures, remained at the two hospitals. Recommendations The recommendations include:
A total of 499 questionnaires were sent to non-client patients of the two hospitals. At the time of writing the report, 154 responses suitable for data analysis had been returned, giving a 35% response rate. The median amount of time since the respondents had last been in hospital was 10 months. A 'definite' need for an advocacy service was seen by 59.6% of the patients, while a further 35.6% said there was a possible need. Only seven replied that there was no need for the service. Many of those who saw a possible need for the service, commented that their own experience was good. But, they could see that for others it had not been so, that patients' rights were important, and that future visits would not necessarily be as good as they had been. Similar comments were made by those who saw a 'definite' need for the service. However, many more reported poor or bad personal experiences, and most involved staff behaviour. For example,
Several patients gave explicit negative details but asked that they be kept confidential. They were anticipating a return to the hospital, and did not want trouble. Patients who felt that they had cause to have used the advocacy service, but did not totalled 30.3%. Their most common reason was ignorance of the service. Others included, being too tired and exhausted, and,
Reflections
on carcinoma-in-situ A recent New Zealand Medical Journal (1)contained a reply from Auckland gynaecologist Dr Ron Jones to criticisms of the 1984 paper on CIS co-written by Jones and other National Women's Hospital doctors. This paper led to the cervical cancer inquiry of 1987. In recent times, the paper has been much criticised by Dr Graeme Overton and other National Women's Hospital doctors. These criticisms were highlighted in Jan Corbett's 'Second Thoughts' Metro article in 1990. Dr Jones was one of four authors of the 1984 article. Of the others, Dr Bill McIndoe is dead, Dr Malcolm Mclean is retired and the statistician, Mr Peter Mullins, has played an odd role. At the time when Phillida Bunkle and Sandra Coney wrote the original 'unfortunate experiment' article, he was interviewed and quoted, and expressed no reservations about the 1984 paper. Much later, he was critical about some aspects of it to Metro. In his NZMJ paper, Dr Jones answers the criticisms made in the article. He explains the selection of cases, and how they were retrospectively divided into two groups according to whether they had positive or negative histology after treatment. He accepts that there might have been minor discrepancies about how patients got in one group or the other as a 'value judgement' was involved, but says that the 25-fold difference in outcome between the groups was ' so large', that minor changes in the groups could not affect the outcome. He also points out the progression rate to invasive cancer in the inadequately treated Group 2 women is consistent with other studies of the natural history of the disease conducted elsewhere in the world. In other words, there was nothing startling in the findings of the study; the startling aspect was the lack of ethics, the fact that the women involved did not know they were part of an experiment and that it took so long for it to become public and for the women to be recalled. Dr Jones points out that although there have been persistent assertions from defenders of Dr Green that he never divided his patients into groups, this argument shows an ignorance of Green's work. In many of his published papers, Green talks about having groups of patients with ' adequately diagnosed but untreated lesions' which he was following to see what would happen. Dr Jones answers criticisms that he and his co-authors were ' secretive' about their work by enumerating five congresses and meetings at which preliminary findings were presented. Prepublication copies were also given to the medical superintendent of NWH, Dr Gabrielle Collison, the head of the postgraduate school, Professor Dennis Bonham and the head of the relevant clinical team. Mr Mullins is criticised by Dr Jones for not expressing any doubts he may have had about the paper in the appropriate forum: ' Scientific practice expects an author who subsequently believes the content of a paper to be in error, to publish a retraction in the same journal following discussion with his co-authors. Seven years later he has done neither.' Dr Jones believes that no action followed the publication of the 1984 paper at NWH because of ' rigid university and hospital hierarchies, the strong personalities involved We were under no illusion that the majority of the staff did not want to change the status quo. It is noteworthy that there were no criticisms of it [the paper] until the inquiry three years later Those who saw the inquiry as a threat to the hospital and senior colleagues needed to discredit the 1984 paper.' (1) Jones RW. Reflections on carcinoma in situ. NZMedJ 1991;104:339-341.Cartwright Report Three Years On August 5th marked the third anniversary of the release of the Cartwright Report. At the second national gathering of Women's Health Councils it was decided to make the day a focus for activity in order to rehighlight the fact that many recommendations have still to see the light of day. Women's Health Councils around the country organised ceremonies to mark the day. Members of the Auckland Women's Health Council gathered at the Spirit of Peace statue outside National Women's Hospital. After some initial discussion with a hospital employee about whether or not official permission had been gained for the activity, flowers were laid on the statue and a sash draped over her reading " Lest We Forget" . A period of silence followed in memory of the women who died as a result of the experiment and who continue to die. In Wellington a candlelight ceremony was held on the steps of Parliament and there were tree planting ceremonies in Thames and Invercargill on the day. Waikato women sent buttonholes of rosemary to all Members of Parliament in their area. The ceremony in Auckland was followed by dinner and entertainment for past and present members of the Council. After some hilarious skits from women's comedy group Bandanna, Sandra Coney spoke about the fate of Cartwright issues under the National government. Sandra had some sobering thoughts for us in her analysis of the effects on women of the changes to health and social welfare announced in the Budget. Little or no attention has been paid in the changes proposed in Simon Upton's Green and White Paper to accountability of health services to consumers, consumer involvement in planning of services, ethical issues or patients' rights issues. The only levels at which consumers are being invited to have a say, said Sandra, was by 'writing to a anonymous box number in Wellington or taking over the running of small hospitals which the government is no longer interested in. In all probability, local communities would end up fund-raising to keep these facilities open. The public is also being told it can have a say in establishing what will be 'core services', in other words basic services people are entitled to. There is considerable disbelief about the possibility of arriving at a consensus about these in the short term. The emphasis in the proposed changes in the government's White and Green Paper is on efficiency. There is no vision of what health means except to process people as quickly possible. In this climate the Cartwright recommendations will be under threat, said Sandra. Despite assurances to the contrary it does seem that we may still be waiting sometime for all the recommendations to be implemented. Sandra had also prepared a report on the progress made on the implementation of the Cartwright recommendations which was widely distributed and reported in the Herald, New Zealand Doctor and the Evening Post. In summary, the report states that progress on the recommendations has been slow and there has been determined resistance to any changes from sections of the medical profession. In addition to this the National government appears to be less committed to Cartwright reforms and in general is more responsive to the medical lobby than consumer groups. For example, the Expert Group advising the Minister of Health on cervical screening which had 5 consumer representatives, including Maori and Pacific Island women, was disbanded by National and a technical group set up in its place which has no consumer representation. Recommendations still to be actioned include the Health Commissioner Bill, which has yet to become law, allowing for the appointment of a Commissioner, the employment of patient advocates and the drafting of a patient bill of rights. This Bill is currently with the Select, Committee and oral and written submissions have been received. The New Zealand Medical Association has argued that this Bill should be seen in tandem with the proposed revision of the Medical Practitioners Act, the legislation covering doctors' disciplinary systems. The government appears receptive to this proposal but if this were to happen, it would further delay the progress of the Health Commissioner Bill into law. Added in WHW July 1991 The Uncertain Future of the Health Commissioner Bill, WHW July 1991 Early in June the Social Services Select Committee began hearing oral submissions on the Health Commissioner Bill. Fertility Action presented a submission stating our strong support for the bill in its present form. There has been some criticism of the bill by medical professional groups although it was interesting to note that on the day that Fertility Action gave its submission, a group representing resident medical officers working in hospitals expressed its support for the bill. This group of junior doctors said that it was impossible for them to get any effective action over senior doctors who breached patients' rights because of their own lesser status. Doctors React The New Zealand Medical Association has been arguing that the bill should be considered in tandem with the revision of the Medical Practitioners Act. This act covers doctors' own disciplinary systems. The NZMA has said that Katherine O'Regan, the Minister in charge of this legislation, is receptive to this suggestion. If this were to happen, it would not be such good news for consumers. The revision of the Medical Practitioners Act has been progressing inordinately slowly and is not well advanced. Dovetailing the two could hold up the passage of the Health Commissioner Bill. Already three years have gone by since this position was recommended by Judge Cartwright. The doctors' real gripe is about potential loss of control over complaints processes if the Health Commissioner Bill becomes law. The bill gives the public an alternative independent complaints system, one controlled by a non-medical agency. The NZMA would like to see complaints which are not resolved by the office of Health Commissioner referred to their own disciplinary system for adjudication rather than to the Equal Opportunities Tribunal. Doctors in New Zealand have consistently fought against any reform which they see as meaning 'state control of medicine' and the Health Commissioner Bill is regarded by them in this light. Advocates Or Mediators? Another threat to the bill comes around the issue of the patient advocates. There has been a push to see these as 'mediators' along the lines of the Waikato Consumer Associates scheme. Women and women's groups in Hamilton report that this scheme does not work well for patients - that it is 'weak and not assertive enough on the patients' behalf. It would be a backward step to institute schemes like this rather than form a patient advocacy service for patients. The submission from the office of Ombudsman argued for a system similar to that in Britain where there is a Health Service Commissioner. This is much more like the office of Ombudsman here -distant from the public, able only to take complaints in writing, unable to award compensation and capable only of making recommendations rather than decisions. As well, the Health Service Commissioner is backed by a publicly funded system of local health councils which take complaints, help complainants, and refer them on when necessary. There is no such system in New Zealand. In addition, the UK Health Service Commissioner resolves a pathetic number of complaints each year - in 1989-90 only 89 of 848 were concluded for 50 million people in the UK! About half the grievances in these cases were upheld; 472 other cases were rejected and 273 referred back and closed. This does not seem an adequate model for New Zealand to follow. Points in the Act which we endorse include:
Death among Cartwright recall patients - WHW July 1991 The Auckland Area Health Board said in June that it had managed to contact one more of the 139 women recalled by Judge Silvia Cartwright at the Cervical Cancer Inquiry. The board has now contacted 134 of the women and 73 had accepted the offer of an independent assessment. The board has information on the outcome for only some of the 134 women and does not have information on women who have seen doctors elsewhere or who chose to continue attending National Women's Hospital. In June the board announced that two of the recall women were known to have developed invasive cancer, and that one had died in early 1991. This woman had attended NWH continuously since the 1960s and was told she had inoperable cervical cancer in late 1990. She had been in contact with Fertility Action since 1987. The board was reluctant to reveal this death, even though it occurred at a board hospital. As the board has been publishing reports on the outcome of the recall for some years, and much mileage had been made out of the absence of cancer cases by various anti-Cartwright doctors, Fertility Action lobbied the board to make this latest information public which it finally did in June. Informed choice and consent - where are the teeth? The Department of Health Working Party on Informed Choice and Consent has completed a statement for health care providers and planners called Principles and Guidelines for Informed Choice and Consent. This was released in early July. This is the second shot the Department of Health has had at developing a standard on informed consent. The working party was formed following the publication of the NZ Health Council's booklet 'Informed Consent: A Discussion Paper and Draft Standards for Patient Care Services'. While these standards were largely supported by consumer health groups, it generated considerable negative response from some sections of the medical profession, especially the NZMA, who said it was unworkable, proscriptive and time-consuming. The NZMA criticised the composition of the committee which developed the standards, especially the lack of practising clinicians on it. Submissions on the standards were neatly split between supporters (lay) and opposition (medical). In the face of this, the Department of Health backtracked and set up a second committee. This contained only one consumer representative, and the group was chaired by Professor Peter Skegg, although oddly his name does not appear as even a member of the working party on the final document. It was the task of the second working party to consider the views of the submissions during its deliberations. What's In and What's Not Three principles of informed consent and choice are outlined in the report: autonomy, responsibility and accountability. An issue of conflict in the working party was informed consent and children. Some members argued that in the case of children the doctor had the right to make decisions in the best interests of the child. Fertility Action and other women's groups argue that the parent or parents are the natural advocate for the child and that their wishes, not the doctors, must be considered. It is pleasing to see that the final guidelines recognise parents as the natural advocates. Although the guidelines have a positive focus they are very broad statements of principle and are not detailed enough to guarantee the rights of consumers are adequately met. The sample consent forms laying out how written consent should be obtained have been entirely lost. Of particular concern is the lack of any mechanism for accountability or enforcement. It is not at all clear what status these guidelines have or whether they have been endorsed or adopted by r the Department of Health. Because of these obvious deficiencies the Health Commissioner is a much needed channel for informed consent breaches and concerns. As well as this, a long list of issues the committee failed to address is given. These include AIDS, post-mortems, use of human tissue, research, teaching, and emergencies. An Answer to Metro's 'Second Thoughts' article (Report on an article in NZMJ Dr Charlotte Paul and Dr Linda Holloway that answers Metro's article that recanted on it's original 'Unfortunate experiment' article)FAN April 1991 Several reports and events have answered the ill-founded criticisms of the Cartwright Report contained in Metro's 'Second Thoughts' article in mid-1990. Mrs Valerie Smith withdrew her High Court challenge to the report, her lawyer confessing that Mrs Smith had misunderstood what the judge had said in her report and conceding many of the points made by the Solicitor General in defence of the report. One of the most powerful statements rebutting Metro's allegations was the findings of the Medical Council in censuring Professor Dennis Bonham, and then Bonham's own confessions in the Sunday Star (1) which really pulled the rug out from under Metro. Here, Bonham admitted things he had not at the inquiry, particularly that he knew that something was seriously amiss in the practices of Professor Green with regard to his CIS patients. His approach was so conservative, he said, it bordered on fanaticism. Bonham said he had not known how bad things were until the inquiry. This begs the question as to why Bonham did not then change his testimony to the inquiry. At the inquiry he allied himself with Professor Green, using the same lawyer and basically proffering the same arguments. He insisted that Green was a fine and caring doctor who did not put his patients at risk. He considered it his duty, he said in the Star article, to defend his staff. In a recent edition of the New Zealand Medical Journal(2)5, Dr Charlotte Paul and Dr Linda Holloway, medical advisers to Judge Cartwright during the inquiry have provided a detailed critique of the issues raised by Metro and the various disaffected NWH doctors who have repeated them ad nauseam in such forums as the Sunday Star and the New Zealand Medical Journal. Unfortunately this paper from the NZMJ received very little media coverage. The authors say that 'it is with heavy' hearts that we have witnessed how the process of the cervical cancer inquiry has been misrepresented, and how the 'sort of obfuscation has continued.' Underlying the criticisms, they say, "there appears to be contnued, and possibly wilful, confusion about the nature of the 1966 proposal", by which they mean Professor Green's "unfortunate experiment". For instance, there has been continual dispute by some NWH doctors and Metro of the assertion that Green left people 'untreated'. The critics maintain that because Green periodically snipped away at the cervix he was actually 'treating' people, even when he knew he had not removed all the tumour and may have even intended this. Paul and Holloway point out that the interpretation of the proposal made by the judge is supported by what Green himself wrote about what he was doing: 'Importantly, Green himself described following without further treatment not only women who had received a punch biopsy diagnosis, but also women who had persistent or recurrent disease following cone or ring biopsies or hysterectomies.' The authors also discussed the criticisms of the 1984 McIndoe et al paper. The 1984 paper divided patients at the hospital into two groups for the purposes of the study: Group 1 (women with normal smears after treatment) and Group 2 (women with abnormal smears after treatment). The women in Group 2 had very high rates of invasive cancer compared to Group 1 and a number died of the disease. The critics argue that any women who got invasive cancer were destined to get it irrespective of treatment. Dr Overton, for instance, argues that the patients in both groups had the same type of treatment. That is, women in Group 2 did have cone biopsies and hysterectomies. If they had the same kinds of treatment, he argues, then there then must be something different about the women or the cancers to explain the difference in outcome. This argument overlooks the fact that although many of these women did have surgery, afterwards there was evidence of continuing disease, despite the treatment, and this evidence was ignored. In other words, in the cases of most Group 2 women, their treatment (where they had it) had been unsuccessful and no one did anything about it. In this way they did dffier from the Group 1 women who were successfully treated by whatever surgery they had. This is the key point. Paul and Holloway also make the point that various reviews of the slides of women with CIS at NWH show that many had incomplete removal of the tumour. In one survey of cone biopsies at the hospital from 1970 - 81, incomplete excision was found in 38% of cases. These women were then at high risk of disease reoccurrence and invasive cancer. The paper also addresses the issue of the recall of patients by Judge Cartwright. Claims have been made that none of the women recalled were shown to have cancer; the implication being that the recall was not really necessary and that the women were unharmed. The authors say that this shows a misunderstanding of why the recall was done: 'The recall was not done to find people with invasive cancer, but to identify women for whom there was still some doubt about the adequacy of treatment at least 20 women [of those recalled] still had known persistent or recurrent abnormal cytology of the cervix or vagina when last seen.' They point out that the Auckland Area Health Board has information on only some of the women recalled. In fact, since the Paul and Holloway paper was submitted for publication, Fertility Action has become aware of cases of invasive cancer occurring in women who were recalled, and in January one of these women died. There has been a complete silence about this from doctors at NWH (where this woman was treated until her death) and from the Auckland Area Health Board. Paul and Holloway conclude: 'The results of the management of cervical carcinoma in situ at NWH for the years 1955 to 1976, however the patients are grouped, have almost certainly been the worst that have been documented in the world The latest claims [the Metro article] amount to an assertion that continuing positie smears, or a pathological report of incomplete excision, are not warning signs of inadequate treatment of carcinoma-in-situ. Green's defenders have in effect been arguing that the adequacy of treatment of carcinoma-in-situ has not effect on the long-term chance of developing invasive cancer. If these people believe that there really was nothing wrong with Green's policy of 'peck and watch', why do they believe it became unacceptable for new patients by the mid-70s. It became unacceptable because it was dangerous to patients. Not only did it increase their chance of a delay in diagnosis of invasive cancer, and of progression of carcinoma-in-situ to invasion, it also burdened very many women with repeated biopsies and considerable morbidity and anxiety. For very few women were there any benefits over conventional treatment.' The authors then comment on the way the medical profession has behaved over the Green affair. They mention 'the difficulty some of those working in the same institution have had in accepting the mistakes of their colleagues But doctors in New Zealand should not have allowed this spectacle to continue unchallenged. It is hard to acknowledge mistakes in medicine. It is particularlv hard to be involved in reviewing the work of colleagues. When McIndoe and McLean tried to protect the safety of patients at NWH by laying a formal complaint with the medical authorities about Green's work, they must have known it would bring them few friends. Is anyone involved in a critical assessment of a colleague's work to be regarded as a proper target for similar denigration? Only by withstanding such attacks and refusing to become cynical can we assist society in finding better ways to deal with error in medicine'
Auckland
District Law Society Review of the challenges to Cartwright Report The Public Issues Committee (PIC) of the Auckland District Law Society issued a report on October 22 1990. What follows is a summary of their findings. The 12member committee looked at the criticisms because of 'continuing efforts to challenge the findings of the Inquiry'. These challenges have taken two forms:
The PIC noted that since these two challenges were made, the Medical Council had released its findings of disgraceful conduct against Professor Dennis Bonham, former Head of the Department of Obstetrics and Gynaecology at National Women's Hospital (NWH). Nevertheless, the committee felt that all the legal and factual issues raised by these challenges had not been fully addressed. The committee felt 'the likelihood is that the public are thoroughly confused.' The Judicial Review This was heard on 1 August 1990 and the judge, Justice Barker, ordered that the proceedings be struck out. The order was made on the application of the Attorney General and Mrs Smith consented to it. 'In doing so,' says the report, 'Mrs Smith conceded that the grounds upon which she relied had no substance and she acknowledged by her Counsel that she herself had misunderstood the Judge's findings in regard to the McIndoe paper'. The Metro Articles Metro's 'Second Thoughts' article repeated Mrs Smith's allegations, and made the further allegation that the Inquiry was 'a radical feminist witchhunt'. The report notes that in an editorial entitled 'Intellectual Thuggery', published subsequent to Mrs Smith's withdrawal, the editor of Metro reiterated the magazine's position. The PIC said that although Mrs Smith had withdrawn her allegations in the High Court, the allegations in the Metro article have never been withdrawn. Mrs Smith and Metro make two broad allegations against the Cartwright Inquiry. These relate to allegations of mistake of fact and allegations of bias. 1. Allegations of Mistake of Fact The PIC carefully looked at the Judge's report, comparing it with the allegations made by Mrs Smith that the Judge had wrongly interpreted the 1984 paper by McIndoe et al. The PIC concluded that the Judge had in fact understood the 1984 paper, and 'plainly therefore did not make the error alleged.' Mrs Smith also alleged that Judge Cartwright interpreted the 1984 paper as saying that some women were 'untreated' and that she then went ahead and interviewed patients, examined records and made findings as if she believed that. The PIC said it could find no passage in the Cartwright Report which reflects such a misinterpretation by the Judge. It is clear from the report, the PIC said, that the Judge said that women were not 'adequately treated'. She said that women who had their CIS diagnosed were left to see if they developed cervical cancer, and that these women received diagnostic procedures and little more. The PIC also notes that the Judge recorded cases of deliberate failure to eradicate disease and evidence of cases where no treatment was offered at all. The Judge made her own findings as to whether there were women who were inadequately treated, and her findings on this were based on a substantial body of evidence. A further allegation by Mrs Smith was that there was no scientific basis for findings of the progression of CIS to invasive cancer and of inadequate treatment of CIS at NWH. The PIC concluded that the Judge relied on a substantial body of expert opinion and factual evidence in coming to these findings, having heard from experts from all over the world. The PIC report examines further allegations in some detail but they are minor matters of no great import. Allegations of Bias The PIC then looked at the allegations of bias against the Judge. Mrs Smith had alleged that various statements attributed to the Judge from official documents from proceedings prior to the Inquiry meant that she was biased. These related to comments about power being held by white middle aged men in NZ (Note: it is not at all clear that all the statements attributed to the Judge by Mrs Smith were in fact made by her. It appears that some were part of a summary of submissions made to a select committee Judge Cartwright worked on and were not her own views.) They noted the following points:
The PIC also noted that:
The PIC concluded that it could find neither factual nor legal basis for challenge to the findings of the Committee of Inquiry. 'The findings of Medical Council of disgraceful conduct and professional misconduct against Professor Bonham support and affirm the findings of the Committee of the Inquiry. In our view it is in the public interest that these criticisms be finally put to rest.' |
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