Women's Health Action Selections from Women's Health Watch December 1998

Women's Health Watch

edited by Sandra Coney

Selected articles from Women's Health Watch newsletters in December 1998

Contents

Issue 47 December 1998

The Cartwright Report - ten years on
Ethics committees survive review
The ageing population - debunking the scaremongering
Breast screening pilots results
New screening advisory group
Infertility drugs and ovarian cancer
Prophylactic mastectomy may not protect against breast cancer
Deaths following sex soon after childbirth
Palliative chemotherapy - more harm than good?

The Cartwright Report Ten Years On: A Critical Evaluation

Sandra Coney discusses the advances made following the Cartwright Inquiry and pinpoints are as where ethics have been neglected.

5 August marked the tenth anniversary of the release of the Report of the Cervical Cancer Inquiry in 1988.1 The report followed months of investigation by Judge Dame Silvia Cartwright into the treatment of women with abnormal smears at National Women's Hospital in Auckland. The inquiry followed the publication in Metro magazine of an article by Phillida Bunkle and the author exposing unethical experimentation.2

The report made sweeping recom-mendations for new structures and processes to reform medical ethics and protect patients' rights. These aimed, firstly, to make informed consent central to relationships between health care professionals and patients, and, secondly, to enhance public scrutiny of medical practice. The judge argued that con-sumers must be fully involved in the delivery of health care, both as individ-uals and as representatives of consumers.

'The focus of attention must shift from the doctor to the patient,' said the report.

Recommendations of the report
There were nine terms of reference for the inquiry and nine pages of findings and recommendations. The main recom-mendations were that:

The ethical committee at the hospital was to be disbanded and the Auckland Area Health Board was to establish one or more external ethics committees. These were to have half lay membership.
Treatment protocols for gynaecological disease were to be developed and maintained. These were to provide the basis for communicating information to health professionals and for communication with patients.
An independent patient advocate,responsible to the Director-General of Health, was to be appointed at National Women's Hospital.
The Human Rights Act was to be amended to include a statement of patients' rights and a Health Commissioner appointed.
A nationally planned population-based cervical screening programme was to be established. Implementation was to involve full consultation with consumer groups as well as health professionals.
123 women were to be recalled for further advice and treatment. These 'special duty' women were later expanded to 139. Another recommendation in the body of the report was for a review of cases of women with a diagnosis of dysplasia (abnormalities preceding carcinoma in situ) to see that their management had been adequate.
The University of Auckland was to improve teaching of ethical principles and heighten awareness of ethical issues among staff and the public.
Medical training was to be improved in the areas of the proper detection and treatment of cervical cancer and precancerous conditions of the genital tract, organised screening, ethics and communication skills.

Implementation of the report
Responsibility for the implementation of the report lay with a variety of agencies, principally the Ministry of Health, the University of Auckland and the Auckland Area Health Board.

Although the majority of the recom-mendations were directed at Auckland institutions, implementation was broad-ened so that many reforms occurred nationally. This was especially true of the reform of ethics committees and the inauguration of a nationwide system of patient advocacy.

Implementation of the Cartwright Report has been more complete than most other similar reports within the health system. This is because there was a high degree of public ownership of the process and findings. The inquiry had been held in public, it was thoroughly covered by the media and the voices of women affected were prominent.

The findings validated work that was already under way by women's and patients' rights groups, and in the case of medical ethics and the cervical screening programme, by academics and public agencies, such as the Ministry of Women's Affairs and the Department of Health.

Despite this high level of support for the findings, a huge amount of work had to go into supporting the implementation and into continually reminding agencies of their responsibility. As the inquiry was launched under a Labour Government, there was a lack of enthusiasm from the incoming National Government. The effectiveness of consumer groups diminished while that of medical interest groups, some of which resisted aspects of the recommendations, was enhanced. Restructuring of the health system tended to sideline the ethical reforms of the Cartwright Report.4

The following discussion examines the implementation of the recommendations listed as from one to six above.

Ethics committees
The status of ethics committees has been somewhat ambiguous since the dis-solution of area health boards and the establishment of regional health authorities. Servicing of ethics com-mittees was taken over by RHAs, but the committees were supposed to be autonomous. The role of accreditation of committees is carried out by the Health Research Council Ethics Committee. However, it is not clear how well ethics committees are performing with regard to membership, functions, process and outcomes. An independent evaluation of the committees would reveal whether committees conform to the national standard and are providing significant protection to health care consumers and research participants.

In mid-1998 the Health Funding Authority proposed reconfiguring the regional ethics committee, reducing their number. Ultimately this has not occurred (at least at this time) but the review raised concern about the independence of the committees if the HFA was able to dissolve some committees and change the composition of others. There was also concern about the loss of public accountability if proposals were being adjudicated by committees at a considerable distance from the area covered by the proposal.

There are other areas of concern. There appears to be confusion about when projects should be taken to ethics committees. I am aware of specific research projects which have not been subjected to ethical review because they have been termed an 'audit', even though they have subsequently been published in journals. Similarly changes in treatment protocols and the introduction of new and innovative treatments are not always subjected to ethical review.

A number of new ethics committees have been set up outside the network of regional ethics committees. An example of this was the clinical ethics committee which approved the withdrawal of life support for Baby L at National Women's Hospital.5 It is not clear why regional ethics committees are not being used for such functions, who these institutional committees are accountable to, and whether they conform to the national standard.

National oversight and coordination of ethics committees is another problem. After extensive consultation, a National Advisory Committee on Health and Disability Services Ethics was established within the Ministry of Health but this was never allowed to function autonomously. In 1997 the Ministry carried out a consultation on the functions and placement of a national group but this situation is still not resolved. While there was some support for a national ethics committee to be placed within the Health Research Council, many consumer groups feared that this tied ethics too closely to research and to the research community, and would undermine public participation. They favoured other options, including placement alongside the Health and Disability Commissioner.

Treatment protocols
Treatment protocols were designed to establish standard treatment for conditions. Deviations from protocols would need to be justified, and if necessary referred to ethics committees. Information for patients would be based on protocols.

While a national protocol was established on the management of women's abnormal smears, in general there was opposition from clinicians to the concept as it was seen as inhibiting clinical freedom. Consequently, few protocols were developed.

The more recent movement towards developing guidelines bears some resemblance to the protocols Judge Cartwright envisaged. Consumers have welcomed this development as providing the potential for treatments to be more evidence-based and thus forestall the perpetuation of ineffectual or harmful treatment practices.

Sadly, the concept of 'best-practice' guidelines has been overtaken by the use of guidelines as a device for rationing, a trend which is not supported by consumer groups (nor many clinicians). Ironically, the Clinical Priority Assessment Criteria (booking system) is far more rigid than the concept of protocols which was so vehemently opposed by clinicians ten years ago.

Patient advocacy and the Health Commissioner
Seven years of lobbying went into supporting the concept of a health commissioner as Judge Cartwright envisaged it. However, the office was established separately from the Human Rights Commission which means that it is rather isolated and not in a position to benefit from the experience of the Human Rights Commission.

Currently it is not entirely clear how well the advocacy system and Office of the Health Commissioner are funct-ioning. There are only 33 full-time equivalent advocates who often have to cover a wide area. In many parts of New Zealand the profile of the advocates in hospitals is not high and it is doubtful that the public knows that advocates can assist in difficulties with private providers, such as general practitioners and hospitals, and with therapists and alternative practitioners.

So far only one case has been taken by the Health Commissioner to the Complaints Review Tribunal and no consumers have taken cases in their own right, as the legislation allows. Although consumers welcomed the Commis-sioner's report on Christchurch Hospital, there was concern that none of the cases discussed was referred to the Tribunal. This is the main mechanism by which compensation can be paid, so that so far no patient has received monetary compensation through the action of the Health Commissioner's office. There seems to be a heavy reliance on an apology from the provider of services as an adequate resolution.

The Commissioner's office is gate-keeper to all disciplinary systems and there has been a reduction in cases which have been referred to these. Indeed, it has been reported that doctors consider they have never had it so good. The Commis-sioner's office is currently involved in action in the High Court against both the Nursing Council and the Medical Disciplinary Tribunal, regarding process issues. There is a lack of information about the process by which the Commis-sioner's finalises cases and whether consumers are satisfied with the outcomes. This is an area where Women's Health Action will be working in the near future.

Cervical Screening Programme
The National Cervical Screening Programme has been in place for eight years and has succeeded in reaching its targets for screening coverage. There is a high degree of public support for and understanding of cervical screening.

However, the programme has suffered under the health reforms. There has been a fragmentation of oversight and coordination with components of programmes contracted to different providers, for example, health promotion separated from register functions in some areas. Recently the HFA reduced the position of national coordinator to a half-time one and it was relocated in Auckland, separating it from the national register which is in Wellington. Colposcopy waiting lists exceed the national protocol in most regions of New Zealand. 6

The most serious omission is the failure to carry out a formal evaluation of the programme. The Ministry of Health commissioned a group to produce a plan for evaluation, and a draft plan was submitted in June 1997. However, the evaluation is still to occur. Without this we do not have detail about such things as whether women are being regularly screened ('screening coverage', as defined, simply means enrolment on the register), the quality of smear taking and smear reading, and waiting times for colposcopy. In particular, the screening histories of women diagnosed with cervical cancer are not being reviewed to see whether these reveal failures of services.

There is currently no advisory body for cervical screening although the Health Funding Authority is consulting about how to reestablish a committee. Since 1990 there has been a progressive loss of consumer involvement in implementation of the programme.

Recall of 'special duty' women and dysplasia review
The 'special duty' women were recalled and offered independent advice and treatment. By August 1989 53 women had attended an independent clinic. Nine were found to have conditions needing treatment. In all about 25 women needed further treatment.

The dysplasia review has been a casualty of the dissolution of the Auckland Area Health Board, constant management changes and a lack of enthusiasm for the project. Despite repeated requests from Women's Health Action for reports on progress of the review, partial information on the outcome only became available in late July 1998, and at the time of writing it is not clear what action National Women's Hospital will be taking on the findings.

The Cartwright Report in the wider context
While the specific reforms discussed above were, in general, implemented satisfactorily, perhaps the major effect of the report was the heightened awareness among the public of the need to be assertive in their interactions with health professionals. The right to ask questions and to expect adequate answers was emphasised.

Many doctors also accepted the need to inform patients more and include the concept of informed consent in their practice.

There has been no formal evaluation of the effects of this significant change in the culture surrounding people's use of health services. It is my suspicion that the effect was profound, there being a ripple effect through health services far beyond gynaecology. New Zealand is a small country providing the advantage (and sometimes, disadvantage) that change can occur relatively speedily and broadly. Virtually no one in the health professions would have been ignorant of the findings of the Cartwright Report. The report raised the profile of human rights in general, and contributed to other reforms such as the Privacy Act 1993.

However, this raised ethical consciousness has had little impact on the health reforms process. Ethics have been compartmentalised as relevant only in clinical settings, rather than being relevant to structural change or government policy. There is a tendency to view the existence of the Health Commissioner as having completely taken care of ethics in the health sector.

No structure was put in place to examine the ethical aspects of the health 'reforms'. Yet health sector restructuring involves a large number of new ethical dilemmas, mainly around restricted access to services and withdrawal of services.

In mid-1998 the Canterbury Ethics Committee was asked by a Christchurch surgeon to review the 'booking system'. The committee itemised a number of ethical problems with the system and went on to state that it was 'very concerned' that there had been no formal ethical evaluation before it was introduced. It commented that it was 'extraordinary that every health and disability research project and innovative procedure in New Zealand, no matter how small, must be reviewed by an accredited ethics committee, but a system affecting many New Zealanders may be introduced without formal ethical review.'

Rationing and prioritisation of services are government policy, yet the ethical dimensions of these processes have not been formally scrutinised.

The move towards integrated care raises ethical issues in the extraction of private sector profits from public funds, 'cream-skimming' or rejection of high-cost patients, the use of financial and other incentives for providers, loss of patient autonomy, and the development of integrated electronic patient information systems. Integrated or managed care controls costs by restricting access to the provider of choice, requiring pre-authorisation of high-cost treatments and referrals, reducing referrals and hospital stays and refusing and withdrawing treatment.7

All these practices undermine informed consent. In managed care, patients' autonomy is compromised, as is the concept of partnership with providers. Managed care has been described as 'rationing at the bedside' but the rationing may occur in the health professional's head, or by way of his or her computer terminal, so that consumers may not even be told that certain choices are being withheld. Decisions about whether a person can get treatment may be made by a manager or other 'invisible diagnostician' whom the patient never meets.

These ethical issues have been raised by consumers but they are very seldom included in the discussions which are occurring between health funding authorities and health professionals.

At the same time there has been a downgrading of consumer involvement in health care policy formulation. Judge Cartwright's recommendations were made when elected area health boards existed. Since that time there have been diminishing opportunities for consumers to participate in health planning. If this does occur, it is when, and on the terms set by the particular health body.

Conclusion
The Cartwright Report led to major advances in patients' rights and health sector ethics. A number of new bodies were established to provide ethical review and protect the rights of consumers of health and disability services. There were greater opportunities for public involvement in health policy development and health services planning. Consumers were encouraged to be more articulate and questioning and health professionals were expected to share decision-making with their patients.

This enhanced ethical consciousness has not been taken into the health reforms process, so that many decisions which seriously affect the public are being made without considering the ethical aspects. The task for the next decade is to ensure that ethical review is required of all new policy before change is implemented.

This article originally appeared in Otago Bioethics Review.

References
1 Silvia Cartwright, The Report of the Cervical Cancer Inquiry, Auckland, 1998
2 Sandra Coney and Phillida Bunkle, 'An "Unfortunate Experiment" at National Women's', Metro, June 1987: 47-65
3 Cartwright, p 126
4 Sandra Coney (ed) Unfinished Business: What Happened to the Cartwright Report?, Women's Health Action, 1993
5 Miriyana Alexander, 'Life in hands of court', Sunday Star-Times, 20 September 1998: A1
6 Waiting for colposcopy', New Zealand Health Review, Winter 1998, 1 (1): 6
7 Sandra Coney, 'Open letter to the uninformed: Managed care means damaged ethics', Health Care Analysis, 1997; 5: 252-8

Ethics Committees survive review

The current number of regional Ethics Committees will remain the same following strong recommendations to the Health Funding Authority about the value of smaller provincial ethics committees.

The HFA decision to maintain the status quo followed a review in which the HFA was proposing to cut the number of smaller, regional committees by 50%. However ethics committees made a strong case for preservation of the smaller committees which they argued are an essential voice for rural and provincial communities.

Wellington Ethics Committee chair Sharron Cole said ethics committees must continue to represent the voice of smaller provincial and rural communities, as well as the larger centres.

She also pointed out most members of committees are volunteers and may not have the time to travel long distances to committees in larger centres. Women's Health Action spokeswoman Sandra Coney says she's extremely relieved about the HFA decision. She was concerned that consumer groups and individuals who had an expressed interest in ethics committees were not included in the review. She described the HFA review as a gross act of political interference.

'Ethics Committees were set up by Judge Cartwright to be independent for very good reason. During the inquiry it was revealed that the National Women's Hospital ethics committee was controlled by the same people who were carrying out much of the research in the hospital. There was no public scrutiny of the way they carried out their task.'

'The ethics committees are supposed to be independent of universities, politicians and funders. The regional health authorities were supposed to be simply a funding mechanism for ethics committees. The HFA does not have the right to interfere with the ethics committees' structure', Ms Coney says.

HFA Project Manager Sally Wilkinson says there was strong support for maintaining the current number of ethics committees. However she anticipates the number and location of committees will continue to be discussed as part of the proposed review of the national standards for ethics committees being carried out by the Health Research Council next year.

Ethics committees like Wellington have reacted with relief and 'some surprise' to the HFA reprieve. However Sharron Cole admits to some burn-out from the review process, with the HFA review following a recent MoH review and the HRC review next year.

'There's nothing wrong with audits of performance but you do start to wonder about the resources which go into these interminable reviews. It takes the reviewing agency a huge amount of time and energy and it takes us a lot of time. and energy to ensure we provide the right information,' Sharron Cole says.

Ms Cole points out the Health Research Council is the correct statutory body to review ethics committees.

Sandra Coney cautions that the current reprieve may not be a permanent state of affairs. 'It shows that we will have to maintain vigilance, in case similar proposals surface again,' she said.

The ageing population - debunking the scaremongering

Anne Else is the co-author, with Susan St John, of a new book on ageing and superannuation called A Super Future. The following is the text of a talk that Anne gave to the recent Women's Health Summit held in Wellington.

All over the world, women can now expect to live longer than their mothers did. Life expectancy is higher than it has ever been before. In New Zealand, women who reach 65 can expect to live for another 19 years. Men can expect to live for another 15 years.

The reasons for this male/female gap are complex. However, it is getting smaller. The other marked difference in New Zealand is between Maori and non-Maori. Unlike the difference between men and women, most of this gap is due to deaths before the age of 65. Maori death rates for the year after birth, for men aged 40 and over, and for cardiovascular disease and lung cancer are still high compared with non-Maori rates. But the overall difference is much smaller than it was even 20 years ago. For those who reach 65, it is now narrow.

Life expectancy is still growing. By the third decade of next century, it's likely that men of 65 will live another 19 years, on average, and women just over 22 years. This is probably the first time in human history that there has been such a marked lengthening of life expectancy for people who reach 65.

The increase in average length of life this century has been greater than the increase throughout the whole of human history since pre-Roman times. It is so large, says a US demographer, that we have almost become a different species. 'Retirement used to be rare, because most people died during their work life. At least one parent had usually died before the last child left home. Orphans were common and old people were scarce. Now the opposite is true...No society of the past has had to cope with these issues.' (J.E. Barren, "The Process of Aging", in A. Pifer and L. Bronte (eds), Our Aging Society, Paradox and Promise, WW Norton and Co 1986, p.267.) Other authors point out that at the same time as horizontal family ties between men and women are fragmenting, and men's ties with their children are often very tenuous, vertical family ties among women are probably stronger than ever. It is now common for four generations of women to be able to interact.

The greying of the population
But living longer is only half the story. The other half is about the changing shape of the population as a whole. Not only are women living longer; we are also having fewer children. The inevitable result will be more older people, a majority of them women, and fewer younger people.

In fact, New Zealand is moving much more slowly along this path than similar countries overseas. European and Japanese birth rates are already well below replacement level. Ours are not nearly as low. In this country, births will go on outnumbering deaths for the next 40 years. So why are we being told to panic?

Something to celebrate?
Longer life is an ancient human goal. Yet there has been remarkably little celebration of reaching it among Pakeha in New Zealand, or most other developed countries. Instead, the old are being painted as some kind of looming "grey peril". Why is this happening?

Older people don't usually do full-time paid work. They get their income solely or mainly from a tax-funded pension of some kind. In market terms, they produce nothing. They consume too little of what the market sells and too much of what the state provides. And they rely on others to pay for it all. What's more, they need younger people to look after them. Taxes and caring interfere with paid work. So the growing weight of numbers of "unproductive" old people, we are told, threatens to sink the whole economy.

Sexism in the scare tactics
The fact that more of the old are women seems to make it all much worse. Here is one of the National Business Review's gentlemen columnists waxing apoplectic about the future cost of health care: "an old-old female costs the government 10 times as much as a 20-year-old". You can almost hear him thinking "and she's 100 times less use to us chaps". The headline for this piece was, "Elderly's welfare appetite gives everyone a pain." (National Business Review, 4 July 1998.)

Such claims appear to be deliberately aiming to set the young against the old That means they are trying to set children and grandchildren against their parents and grandparents. Even more absurd, they are trying to set today's baby boomers against their own future selves.

Affordability issues
Why is this being done? The idea seems to be to make us fear the bogey of ageing so much that we will all stop expecting any kind of liveable income from the state. Then more and more of us will start demanding tax cuts, so we can save enough to do without a pension and buy our own health care. If taxes are cut enough, then of course the state won't be able to pay. So the prophecy will become self-fulfilling

What's good for women is good for men
As we all know, women earn less than men and enter old age with lower assets than men, mainly because they do more unpaid work - including caring for the old. Thanks to the failed campaign for compulsory private saving, we know that at least 85 percent of all women, and 40 percent of all men, do not earn enough over their whole working-age lives to save what they would need to provide an income in old age, even at the most basic level.

Whatever arrangements we make for income in old age, they must meet the needs of women. If they do, we can be sure they will meet men's needs too. New Zealand's unique pension system does this more successfully than almost any other. It also avoids many of the problems facing systems elsewhere.

This is largely because, first, it does not try to link the amount you get to the amount you previously earnt from paid work. People who earnt little or nothing - and who are much more likely to be women - get the same pension as others. High earners do not get a higher pension. Secondly, our system treats women and men exactly the same, so that women get a pension in their own right, not as their husband's dependents. Professor John Campbell has called it the best public health measure we have for the old. But it has to be defended. The attack on it by National in October will certainly not be the last.

The myth of universal institutionalisation
Exaggerated claims about the cost of health care for the old reinforce the belief that old age inevitably brings a depressing (and expensive) decline into disease, decrepitude and total dependence. When the Senior Citizens Unit held consultations around the country in 1993, it found a widespread assumption that "most older people will eventually require residential care services."

Yet the majority of people will not go into this type of care at all. Of those who do, few spend many years in it. A recent US study suggests that of those who turned 60 in 1990, well under half (43%) are likely to enter residential care at all, and only 9 percent will use it for as long as five years. These figures are probably fairly comparable with what will happen in New Zealand.

What is really happening to health in old age? Is it getting worse, or better? The answer is that like so many other fields to do with old age, we don't really know, because we haven't gathered the information. As a major report on care for older people put it, "Regrettably, there are no routine measures of disability and well-being in the older population which monitor changes over time."

(D.Richmond et al, Care for Older People in New Zealand, A Report to the National Advisory Committee on Core Health and Disability Support Services, 1995, p.24.)

Health in old age
Older people are more different from each other than people in any other age group, not only in health but in every other respect. People's state of health in old age depends heavily on how they have fared in previous years. The most important factors are income and housing. The New Zealand evidence suggests that health inequalities are largely due to socio-economic inequalities. This helps to explain why the decline in cardiovascular disease has been concentrated in the better-off groups, widening the gap between them and others.

At all ages, too little physical activity is one of the most important risk factors for cardiovascular disease. The others are raised blood pressure, raised serum cholesterol, poor nutrition (too much fat and salt, too little fresh fruit and vegetables), heavy alcohol consumption, and smoking. These are all bad for health generally.

A high proportion of older people currently have all these factors. So even small improvements across this age group can have a big impact on their cardiovascular health. This in turn can lower both the social and financial costs of illness. Relatively cheap, high value-for-money public health promotion would achieve this. But it must be targeted to the old, as well as the young and middle aged.

The physiology of old age is different from that of youth. When old people become ill, their system deteriorates faster. The body is less able to repair itself. There is also a higher risk of complications. Disability in older people is commonly the result of new underlying illness. So it's very important to deal with any identified health problem quickly. Otherwise irreversible deterioration can set in.

The new booking system for public hospital surgery ignores the known facts about ageing. Scoring is based on factors such as level of pain, suffering, or disability. For cataracts, a patient has to be unable to drive, or to read without a magnifying glass. For hip surgery, a patient has to need excessive pain medication to sleep, and have trouble walking any distance.

By the time the old reach this stage, they have already lost their independence. They are likely to have deteriorated so badly that it may be impossible to restore independence. Loss of independence inevitably brings a need for more care - everything from meals on wheels to round-the-clock nursing. The downstream costs of this loss are much higher than the costs of providing co-ordinated health care through thorough, expert geriatric assessment and prompt treatment, followed by effective rehabilitation. But this is not what is happening under the current fragmented regime.

Last year the various organisations involved - Age Concern, Alzheimers Society, Association of Gerontology, New Zealand Council of Christian Social Services, Home Support Association, HospitalsAssociation, and Licensed Rest Homes Association - joined forces to form the Older People's Health Forum. In 1998 they produced a policy statement. (Key Outcomes for the Health of Older People in New Zealand: Recommendations to the Minister of Health, January 1998.) It stressed the need to provide an integrated, collaborative, nationally consistent approach to health care. It needs to be supported.

The grey contribution
Tax revenue transferred to older people, for pensions, health care or anything else, does not disappear out of the economy. Most of it is immediately spent on goods and services. This sustains and creates paid work. Most important of all, older people are not a useless burden. Provided they have an adequate level of income, housing and public health care, they can and do continue to contribute to their families, communities and society ~ hundreds of different ways. Our society could not function without them.

Our new book, A Super Future? The Price of Growing Older in New Zealand (Anne Else and Susan St John, Tandem Press, 1998) explains how the New Zealand pension system works, why it is so important to keep it broadly in place, and how this can be done. We hope it will give you the information you need to make sure this happens.

But it also points out that we need to go much further. We urgently need to start thinking sensibly about what it means to grow older as a society. It makes no sense at all to go on seeing what is now a third of our lives as nothing but a kind of postscript. Women are far better placed than men to lead this shift, and the time to start is now.

At stake are all our futures.

Results of second rounds of breast screening pilots

With BreastScreen Aotearoa now launched, it is timely to revisit the pilot programmes for the lessons they offer in the problems of screening. Sandra Coney summarises some of the results of the evaluation of the second round of screening in the two pilot programmes (1994-96).

Information systems are critical to screening programmes. As a reduction in deaths will not show up until seven to ten years after screening starts, surrogate measures have to be used to predict success. In New Zealand these were established in the Interim National Quality Standards and they include such things as screening coverage, times taken at various points in the programme, quality indicators for the actual x-ray taking and reading process, number of women recalled and number of biopsies taken, cancers detected, the size of the tumours and the kinds of treatments women have.

Knowing how well these indicators meet the quality standards can only be ascertained if information is constantly and consistently being collected and scrutinised.

Information failures in Otago
This proved the biggest problem for the Otago Pilot Breast Cancer Screening Programme which seems to have an irreparably flawed information system. Information needed to assess whether the programme was meeting the Quality Standards was in many cases missing. This included information on such things as waiting times for women to receive their results or recalls, ethnic origin of women participating, and linkage to the National Cancer Registry. The latter problem meant that the interval cancer rate is not known so that it was difficult to assess the important indicators of the sensitivity and specificity of the programme.

Excess x-rays
As in the first round, a significant number of women still had more than four films taken (33%) and this proportion varied between centres. At Kew Hospital, 42% of screens involved more than four films, and in the mobile units this occurred for 35% of women. There was also a high referral for assessment rate in the age group 50-54 years relative to the cancer detection rate.

Positive results
Other indicators were more positive. The rescreen rate was 86% and 86% of women referred for assessment received a final diagnosis after a single follow up visit.

Twenty six percent of cancers detected in the prevalence screen of round two (women being screened for the first time) were under 10 mms; 36% of cancers detected in the incidence screens of round two (women who have already been screened) were under 10 mm; 16% were DCIS.

The programme detected 70 cancers in round two, bringing the total number of breast cancer cases found in the 17293 women screened to 204. This a higher rate of breast cancer than other parts of the country. The reasons for this are not clear.

Waikato's problems with invitations
The major challenge for the Waikato pilot was the method by which women are asked to participate in screening. The pilot used electoral rolls and found that this resulted in a large number of invit-ations going to people who were not eligible for the programme. Slightly over 9% of all invitations were sent to males, women who were 65 or over or women who lived outside the area. A large number (6%) of invitations were returned undelivered and around 1% went to dead people.

As it was considered unethical to invite women and then not screen them, this resulted in a large number of women outside the limits of the programme being screened, over 11% of all those screened.

Response rates low
The response rate to an invitation to have a first mammogram had reduced from the first round. In the first round the response rate was 67%, but in the second round it was 59%. There was an especially low (50%) response rate for those women being asked for the first time. The evaluators said that this low rate was of great concern because these women should be participating every two years for the next 15 years.

Because of these difficulties the pilot evaluation recommended that the method of invitation be trialled before being adopted by the national programme.

Maori coverage low
The Maori rate for coverage of the eligible age group increased from 34% to 45% over the two rounds but is still much below the Pakeha rate which increased from 67% to 69%. The overall coverage was 67% which is described as 'suboptimal' and below the target needed for a cost-effective programme. The national target for coverage is 70%.

Sixty-nine percent of those eligible women screened in round one returned for a second screen.

Workforce woes
The other major problem encountered by the pilot was recruiting and retaining a trained workforce. The pilot had difficulty filling position for radiographers - eventually two were brought here from the UK, but at times the mobile only screened three weeks out of four due to staff shortages.

Delays in diagnosis
Another area of concern was the low rate of women receiving a diagnosis before they had surgery. An earlier review of the pilot had recommended that this rate be improved. The National Quality Standard is that 70% of women with cancers be diagnosed pre-operatively by cytology and/or core biopsy. This was not achieved by the pilot which had a rate of 37%. Some women had to attend for asses-sment on more than one occasion to achieve a diagnosis adding to the anxiety of women and their families. However, the purchase of new equipment in late 1995 now allows a diagnosis to be made on the assessment day.

In this round 75 women were diagnosed with breast cancer, eight of which were DCIS. Twenty-six of the cancers were less than or equal to 10 mm.

A plea for consistent reporting
It is to be hoped that when the programme goes nationwide, evaluation reports are reported consistently for the whole country. The Waikato and Otago pilots have adopted different reporting styles and do not always report on the quality standards as they are set out in the standards themselves. This needs to be remedied so that it is easy to see how the standards are being met and to allow comparisons between regions.

New screening advisory group

The Health Funding Authority has announced the membership of the new screening advisory group. The group will be chaired by Bernie Mullin who was until recently Manager Public Health Prevention programmes in the HFA. Her successor is Julia Peters.

The members are

Anne Allan-Moetaua - Pacific islands representative
Jo Barnaby - Maori consumer representative
Barbara Robson - consumer representative
Ian Campbell - breast surgeon (Waikato pilot)
Brian Cox - public health physician and epidemiologist (Otago University)
Alison Denyer - GP
Terri Green - health economist
Betsy Marshall - health promotion and Cancer Society
Clint Teague - pathologist
Madelaine Wall - radiologist

The group will report to the National Director of Public Health, Bette Kill. Terms of reference of the group are provision of

a high level overview of prevention programmes, including a forum for the discussion of issues relating to the current national breast and cervical screening programmes;
advice on the evaluation and monitoring relating to the population based screening programmes;
advice of strategic policy issues relating to prevention programmes referred to the group;
cultural advice and consumer perspectives regarding the improvement of policy delivery.

Infertility drugs and ovarian cancer

A new study has failed to confirm an association between ovarian cancer and drugs used to stimulate ovulation during infertility treatment.

Researchers at Australia's Monash University studied more than l0,000 women who underwent in vitro fertilisation treatment 1978, and 1992.

Just over half the women studied used at least one cycle of ovarian-stimulating drugs and the other group did not. Researcher say there was no difference in the incidence of ovarian cancer in the two groups with three cases of invasive ovarian cancer occurring in each group.

The Monash researchers are now conducting a similar study involving about 30,000 women.

The executive director of the American Society of Reproductive Medicine, Dr J Benjamin Younger says the on-going multi-centre studies in Australia have important ramifications for all practitioners and patients engaged in fertility treatment.

'While several studies have suggested some evidence of a link between ovulation drugs and ovarian cancer, there have been an equal number that have shown no link between the two.'

It is imperative that patients be given all the available information about any treatment so they can make the most informed decision about their care, according to Dr Younger.

One smaller Israeli study has come up with inconclusive results. Researchers from the Chaim Sheba Medical Centre say they want to follow patients for another ten years to get more definite answers.

In an interview with Reuters, Dr Lerner-Geva from the Centre points out pregnancy itself is a protective factor for both ovarian and breast cancer.

'If there is any risk involved with the drugs, it will be hard to measure one factor against the other - how much risk against how much protection,' she says.

Ref: JAMA Women's Health Information Center, 9 October 1998

Prophylactic mastectomy may not protect against breast cancer

There is an urgent need for more study into the outcome of performing prophylactic mastectomy on women with the genetic mutation predisposing them to breast cancer, according to the Professor of surgical oncology at Guy's Hospital in London. Professor Ian Fentiman describes prophylactic mastectomy as 'a lottery with no winners' and says the price of neglecting research will be high.

He says germ line genetic mutations are responsible for only 5-10% of cases of breast cancer but clinicians are faced with many worried individuals who have pathological mutations.

'These consultations are as difficult for the doctor as for the patient since no proved preventive approaches exist. Though options such as tamoxifen will probably reduce the incidence of breast cancer, there is nothing to obliterate the risk. Intensive surveillance is an option but without proof or benefit.'

Resorting to the desperate measure of bilateral prophylactic mastectomy may be a vain hope for women, according to Professor Fentiman. He says prophylactic mastectomy was performed on a large number of United States women for a range of ill-defined indications but says the risk of cancer may have been overestimated.

Professor Fentiman also points to the difficulty of removing all subcutaneous mammary tissue. Experiments on rats show removal of ostensibly 100% of the mammary tissue had no effect on subsequent development of neoplasms. He believes similar problems may also occur in humans.

'Unless action is taken, another 10 years will see us in the same state of ignorance.'

He says randomised trials would be difficult and argues for a legally binding system of registering all women who have undergone any kind of prophylactic mastectomy.

'This would help determine the relative efficacy of the procedure in high-risk individuals.

'Were all cases of prophylactic mastectomy to be reported to a central registry, linked to cancer registries, individuals subsequently diagnosed with breast cancer could be identified.'

Pathologists are the most reliable source of information for cancer registries, according to Professor Fentiman.
Ref: BMJ 1998; 317:1402-3

Deaths following sex soon after childbirth

The deaths of two young British women have drawn attention to the risks of fatal complications as a result of having sex too soon after childbirth.

In a recent issue of The Postgraduate Medical Journal, doctors describe two young women who died of air embolisms (air bubbles in the major arteries to the heart and brain) while having sex within eight days of giving birth.

Lead author and pathologist at Bradford Hospital's National Health Service Trust in Bradford, Dr Philip Batman says women are more vulnerable to air embolisms soon after childbirth than at other times. Air forced into the uterus during sex can enter the bloodstream through blood vessels torn during delivery.

Doctors used to recommend women avoid sex for six weeks after childbirth but the rules have been relaxed in recent years, says the chief of the high-risk obstetrics group at the Yale School of Medicine Dr Joshua Copel.

'Six weeks is an arbitrary time frame and many women probably disregard our advice anyway.'

The American College of Obstetricians and Gynaecologists recommends women can usually have sex in about three or four weeks or when they feel comfortable, a sign the uterus has healed. Obstetricians say it also takes this long for incisions outside the vagina or from a Caesarean section to heal.

Earlier research found pregnant women are also at increased risk because air can become trapped between the sac containing the foetus and the uterus wall, then escape through blood vessels on the surface of the uterus. However most doctors sanction intercourse during pregnancy because the risk is so slim, according to the American College.
Ref: New York Times on the Web, 6 October 1998

Palliative chemotherapy - more harm than good?

Only a quarter of patients feel better after having palliative chemotherapy for advanced breast cancer, according to a study reported in the British Medical Journal.

'When I first went on to the oncology wards I found it staggering that patients had their tumours measured to assess shrinkage from chemotherapy but no one was asking them if they actually felt better', says researcher Amanda Ramirez, professor of liaison psychiatry at Guy's, King's College and St Thomas Medical School.

Of the 155 women who signed up to this preliminary study, one third dropped out because they decided not to continue with treatment or because they died and only 26% of the women reported they felt better after chemotherapy than before. A further 19% felt the same after treatment as before, while 22% felt worse.

Professor Ramirez and her team interviewed the women to assess overall sense of wellbeing before treatment, after six weeks and after treatment had finished at about 24 weeks.

'We were also interested in identifying who would be least likely to benefit from palliative chemotherapy,' says Professor Ramirez. 'If we can identify those women who at six weeks - after two cycles of chemotherapy - are likely to come out of treatment feeling worse, then we could either not give it to them or stop treatment after two cycles.'

The researchers identified having a dry mouth before treatment as the main reason why women decided not to finish the full course of chemotherapy or felt worse after treatment. Other possible factors include age, frailty, patient motivation and previous experience with chemotherapy.
Ref: BMJ 1998; 317: 1407

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	Women's Health Watch edited by Sandra Coney Selected articles from Women's Health Watch newsletters in December 1998 Contents Issue 47 December 1998 The Cartwright Report - ten years on Ethics committees survive review The ageing population - debunking the scaremongering Breast screening pilots results New screening advisory group Infertility drugs and ovarian cancer Prophylactic mastectomy may not protect against breast cancer Deaths following sex soon after childbirth Palliative chemotherapy - more harm than good? The Cartwright Report Ten Years On: A Critical Evaluation Sandra Coney discusses the advances made following the Cartwright Inquiry and pinpoints are as where ethics have been neglected. 5 August marked the tenth anniversary of the release of the Report of the Cervical Cancer Inquiry in 1988.1 The report followed months of investigation by Judge Dame Silvia Cartwright into the treatment of women with abnormal smears at National Women's Hospital in Auckland. The inquiry followed the publication in Metro magazine of an article by Phillida Bunkle and the author exposing unethical experimentation.2 The report made sweeping recom-mendations for new structures and processes to reform medical ethics and protect patients' rights. These aimed, firstly, to make informed consent central to relationships between health care professionals and patients, and, secondly, to enhance public scrutiny of medical practice. The judge argued that con-sumers must be fully involved in the delivery of health care, both as individ-uals and as representatives of consumers. 'The focus of attention must shift from the doctor to the patient,' said the report. *Recommendations of the report* There were nine terms of reference for the inquiry and nine pages of findings and recommendations. The main recom-mendations were that: The ethical committee at the hospital was to be disbanded and the Auckland Area Health Board was to establish one or more external ethics committees. These were to have half lay membership. Treatment protocols for gynaecological disease were to be developed and maintained. These were to provide the basis for communicating information to health professionals and for communication with patients. An independent patient advocate,responsible to the Director-General of Health, was to be appointed at National Women's Hospital. The Human Rights Act was to be amended to include a statement of patients' rights and a Health Commissioner appointed. A nationally planned population-based cervical screening programme was to be established. Implementation was to involve full consultation with consumer groups as well as health professionals. 123 women were to be recalled for further advice and treatment. These 'special duty' women were later expanded to 139. Another recommendation in the body of the report was for a review of cases of women with a diagnosis of dysplasia (abnormalities preceding carcinoma in situ) to see that their management had been adequate. The University of Auckland was to improve teaching of ethical principles and heighten awareness of ethical issues among staff and the public. Medical training was to be improved in the areas of the proper detection and treatment of cervical cancer and precancerous conditions of the genital tract, organised screening, ethics and communication skills. Implementation of the report Responsibility for the implementation of the report lay with a variety of agencies, principally the Ministry of Health, the University of Auckland and the Auckland Area Health Board. Although the majority of the recom-mendations were directed at Auckland institutions, implementation was broad-ened so that many reforms occurred nationally. This was especially true of the reform of ethics committees and the inauguration of a nationwide system of patient advocacy. Implementation of the Cartwright Report has been more complete than most other similar reports within the health system. This is because there was a high degree of public ownership of the process and findings. The inquiry had been held in public, it was thoroughly covered by the media and the voices of women affected were prominent. The findings validated work that was already under way by women's and patients' rights groups, and in the case of medical ethics and the cervical screening programme, by academics and public agencies, such as the Ministry of Women's Affairs and the Department of Health. Despite this high level of support for the findings, a huge amount of work had to go into supporting the implementation and into continually reminding agencies of their responsibility. As the inquiry was launched under a Labour Government, there was a lack of enthusiasm from the incoming National Government. The effectiveness of consumer groups diminished while that of medical interest groups, some of which resisted aspects of the recommendations, was enhanced. Restructuring of the health system tended to sideline the ethical reforms of the Cartwright Report.4 The following discussion examines the implementation of the recommendations listed as from one to six above. *Ethics committees* The status of ethics committees has been somewhat ambiguous since the dis-solution of area health boards and the establishment of regional health authorities. Servicing of ethics com-mittees was taken over by RHAs, but the committees were supposed to be autonomous. The role of accreditation of committees is carried out by the Health Research Council Ethics Committee. However, it is not clear how well ethics committees are performing with regard to membership, functions, process and outcomes. An independent evaluation of the committees would reveal whether committees conform to the national standard and are providing significant protection to health care consumers and research participants. In mid-1998 the Health Funding Authority proposed reconfiguring the regional ethics committee, reducing their number. Ultimately this has not occurred (at least at this time) but the review raised concern about the independence of the committees if the HFA was able to dissolve some committees and change the composition of others. There was also concern about the loss of public accountability if proposals were being adjudicated by committees at a considerable distance from the area covered by the proposal. There are other areas of concern. There appears to be confusion about when projects should be taken to ethics committees. I am aware of specific research projects which have not been subjected to ethical review because they have been termed an 'audit', even though they have subsequently been published in journals. Similarly changes in treatment protocols and the introduction of new and innovative treatments are not always subjected to ethical review. A number of new ethics committees have been set up outside the network of regional ethics committees. An example of this was the clinical ethics committee which approved the withdrawal of life support for Baby L at National Women's Hospital.5 It is not clear why regional ethics committees are not being used for such functions, who these institutional committees are accountable to, and whether they conform to the national standard. National oversight and coordination of ethics committees is another problem. After extensive consultation, a National Advisory Committee on Health and Disability Services Ethics was established within the Ministry of Health but this was never allowed to function autonomously. In 1997 the Ministry carried out a consultation on the functions and placement of a national group but this situation is still not resolved. While there was some support for a national ethics committee to be placed within the Health Research Council, many consumer groups feared that this tied ethics too closely to research and to the research community, and would undermine public participation. They favoured other options, including placement alongside the Health and Disability Commissioner. *Treatment protocols* Treatment protocols were designed to establish standard treatment for conditions. Deviations from protocols would need to be justified, and if necessary referred to ethics committees. Information for patients would be based on protocols. While a national protocol was established on the management of women's abnormal smears, in general there was opposition from clinicians to the concept as it was seen as inhibiting clinical freedom. Consequently, few protocols were developed. The more recent movement towards developing guidelines bears some resemblance to the protocols Judge Cartwright envisaged. Consumers have welcomed this development as providing the potential for treatments to be more evidence-based and thus forestall the perpetuation of ineffectual or harmful treatment practices. Sadly, the concept of 'best-practice' guidelines has been overtaken by the use of guidelines as a device for rationing, a trend which is not supported by consumer groups (nor many clinicians). Ironically, the Clinical Priority Assessment Criteria (booking system) is far more rigid than the concept of protocols which was so vehemently opposed by clinicians ten years ago. *Patient advocacy and the Health Commissioner* Seven years of lobbying went into supporting the concept of a health commissioner as Judge Cartwright envisaged it. However, the office was established separately from the Human Rights Commission which means that it is rather isolated and not in a position to benefit from the experience of the Human Rights Commission. Currently it is not entirely clear how well the advocacy system and Office of the Health Commissioner are funct-ioning. There are only 33 full-time equivalent advocates who often have to cover a wide area. In many parts of New Zealand the profile of the advocates in hospitals is not high and it is doubtful that the public knows that advocates can assist in difficulties with private providers, such as general practitioners and hospitals, and with therapists and alternative practitioners. So far only one case has been taken by the Health Commissioner to the Complaints Review Tribunal and no consumers have taken cases in their own right, as the legislation allows. Although consumers welcomed the Commis-sioner's report on Christchurch Hospital, there was concern that none of the cases discussed was referred to the Tribunal. This is the main mechanism by which compensation can be paid, so that so far no patient has received monetary compensation through the action of the Health Commissioner's office. There seems to be a heavy reliance on an apology from the provider of services as an adequate resolution. The Commissioner's office is gate-keeper to all disciplinary systems and there has been a reduction in cases which have been referred to these. Indeed, it has been reported that doctors consider they have never had it so good. The Commis-sioner's office is currently involved in action in the High Court against both the Nursing Council and the Medical Disciplinary Tribunal, regarding process issues. There is a lack of information about the process by which the Commis-sioner's finalises cases and whether consumers are satisfied with the outcomes. This is an area where Women's Health Action will be working in the near future. *Cervical Screening Programme* The National Cervical Screening Programme has been in place for eight years and has succeeded in reaching its targets for screening coverage. There is a high degree of public support for and understanding of cervical screening. However, the programme has suffered under the health reforms. There has been a fragmentation of oversight and coordination with components of programmes contracted to different providers, for example, health promotion separated from register functions in some areas. Recently the HFA reduced the position of national coordinator to a half-time one and it was relocated in Auckland, separating it from the national register which is in Wellington. Colposcopy waiting lists exceed the national protocol in most regions of New Zealand. 6 The most serious omission is the failure to carry out a formal evaluation of the programme. The Ministry of Health commissioned a group to produce a plan for evaluation, and a draft plan was submitted in June 1997. However, the evaluation is still to occur. Without this we do not have detail about such things as whether women are being regularly screened ('screening coverage', as defined, simply means enrolment on the register), the quality of smear taking and smear reading, and waiting times for colposcopy. In particular, the screening histories of women diagnosed with cervical cancer are not being reviewed to see whether these reveal failures of services. There is currently no advisory body for cervical screening although the Health Funding Authority is consulting about how to reestablish a committee. Since 1990 there has been a progressive loss of consumer involvement in implementation of the programme. *Recall of 'special duty' women and dysplasia review* The 'special duty' women were recalled and offered independent advice and treatment. By August 1989 53 women had attended an independent clinic. Nine were found to have conditions needing treatment. In all about 25 women needed further treatment. The dysplasia review has been a casualty of the dissolution of the Auckland Area Health Board, constant management changes and a lack of enthusiasm for the project. Despite repeated requests from Women's Health Action for reports on progress of the review, partial information on the outcome only became available in late July 1998, and at the time of writing it is not clear what action National Women's Hospital will be taking on the findings. *The Cartwright Report in the wider context* While the specific reforms discussed above were, in general, implemented satisfactorily, perhaps the major effect of the report was the heightened awareness among the public of the need to be assertive in their interactions with health professionals. The right to ask questions and to expect adequate answers was emphasised. Many doctors also accepted the need to inform patients more and include the concept of informed consent in their practice. There has been no formal evaluation of the effects of this significant change in the culture surrounding people's use of health services. It is my suspicion that the effect was profound, there being a ripple effect through health services far beyond gynaecology. New Zealand is a small country providing the advantage (and sometimes, disadvantage) that change can occur relatively speedily and broadly. Virtually no one in the health professions would have been ignorant of the findings of the Cartwright Report. The report raised the profile of human rights in general, and contributed to other reforms such as the Privacy Act 1993. However, this raised ethical consciousness has had little impact on the health reforms process. Ethics have been compartmentalised as relevant only in clinical settings, rather than being relevant to structural change or government policy. There is a tendency to view the existence of the Health Commissioner as having completely taken care of ethics in the health sector. No structure was put in place to examine the ethical aspects of the health 'reforms'. Yet health sector restructuring involves a large number of new ethical dilemmas, mainly around restricted access to services and withdrawal of services. In mid-1998 the Canterbury Ethics Committee was asked by a Christchurch surgeon to review the 'booking system'. The committee itemised a number of ethical problems with the system and went on to state that it was 'very concerned' that there had been no formal ethical evaluation before it was introduced. It commented that it was 'extraordinary that every health and disability research project and innovative procedure in New Zealand, no matter how small, must be reviewed by an accredited ethics committee, but a system affecting many New Zealanders may be introduced without formal ethical review.' Rationing and prioritisation of services are government policy, yet the ethical dimensions of these processes have not been formally scrutinised. The move towards integrated care raises ethical issues in the extraction of private sector profits from public funds, 'cream-skimming' or rejection of high-cost patients, the use of financial and other incentives for providers, loss of patient autonomy, and the development of integrated electronic patient information systems. Integrated or managed care controls costs by restricting access to the provider of choice, requiring pre-authorisation of high-cost treatments and referrals, reducing referrals and hospital stays and refusing and withdrawing treatment.7 All these practices undermine informed consent. In managed care, patients' autonomy is compromised, as is the concept of partnership with providers. Managed care has been described as 'rationing at the bedside' but the rationing may occur in the health professional's head, or by way of his or her computer terminal, so that consumers may not even be told that certain choices are being withheld. Decisions about whether a person can get treatment may be made by a manager or other 'invisible diagnostician' whom the patient never meets. These ethical issues have been raised by consumers but they are very seldom included in the discussions which are occurring between health funding authorities and health professionals. At the same time there has been a downgrading of consumer involvement in health care policy formulation. Judge Cartwright's recommendations were made when elected area health boards existed. Since that time there have been diminishing opportunities for consumers to participate in health planning. If this does occur, it is when, and on the terms set by the particular health body. *Conclusion* The Cartwright Report led to major advances in patients' rights and health sector ethics. A number of new bodies were established to provide ethical review and protect the rights of consumers of health and disability services. There were greater opportunities for public involvement in health policy development and health services planning. Consumers were encouraged to be more articulate and questioning and health professionals were expected to share decision-making with their patients. This enhanced ethical consciousness has not been taken into the health reforms process, so that many decisions which seriously affect the public are being made without considering the ethical aspects. The task for the next decade is to ensure that ethical review is required of all new policy before change is implemented. This article originally appeared in Otago Bioethics Review. *References* 1 Silvia Cartwright, The Report of the Cervical Cancer Inquiry, Auckland, 1998 2 Sandra Coney and Phillida Bunkle, 'An "Unfortunate Experiment" at National Women's', Metro, June 1987: 47-65 3 Cartwright, p 126 4 Sandra Coney (ed) Unfinished Business: What Happened to the Cartwright Report?, Women's Health Action, 1993 5 Miriyana Alexander, 'Life in hands of court', Sunday Star-Times, 20 September 1998: A1 6 Waiting for colposcopy', New Zealand Health Review, Winter 1998, 1 (1): 6 7 Sandra Coney, 'Open letter to the uninformed: Managed care means damaged ethics', Health Care Analysis, 1997; 5: 252-8 Ethics Committees survive review The current number of regional Ethics Committees will remain the same following strong recommendations to the Health Funding Authority about the value of smaller provincial ethics committees. The HFA decision to maintain the status quo followed a review in which the HFA was proposing to cut the number of smaller, regional committees by 50%. However ethics committees made a strong case for preservation of the smaller committees which they argued are an essential voice for rural and provincial communities. Wellington Ethics Committee chair Sharron Cole said ethics committees must continue to represent the voice of smaller provincial and rural communities, as well as the larger centres. She also pointed out most members of committees are volunteers and may not have the time to travel long distances to committees in larger centres. Women's Health Action spokeswoman Sandra Coney says she's extremely relieved about the HFA decision. She was concerned that consumer groups and individuals who had an expressed interest in ethics committees were not included in the review. She described the HFA review as a gross act of political interference. 'Ethics Committees were set up by Judge Cartwright to be independent for very good reason. During the inquiry it was revealed that the National Women's Hospital ethics committee was controlled by the same people who were carrying out much of the research in the hospital. There was no public scrutiny of the way they carried out their task.' 'The ethics committees are supposed to be independent of universities, politicians and funders. The regional health authorities were supposed to be simply a funding mechanism for ethics committees. The HFA does not have the right to interfere with the ethics committees' structure', Ms Coney says. HFA Project Manager Sally Wilkinson says there was strong support for maintaining the current number of ethics committees. However she anticipates the number and location of committees will continue to be discussed as part of the proposed review of the national standards for ethics committees being carried out by the Health Research Council next year. Ethics committees like Wellington have reacted with relief and 'some surprise' to the HFA reprieve. However Sharron Cole admits to some burn-out from the review process, with the HFA review following a recent MoH review and the HRC review next year. 'There's nothing wrong with audits of performance but you do start to wonder about the resources which go into these interminable reviews. It takes the reviewing agency a huge amount of time and energy and it takes us a lot of time. and energy to ensure we provide the right information,' Sharron Cole says. Ms Cole points out the Health Research Council is the correct statutory body to review ethics committees. Sandra Coney cautions that the current reprieve may not be a permanent state of affairs. 'It shows that we will have to maintain vigilance, in case similar proposals surface again,' she said. The ageing population - debunking the scaremongering Anne Else is the co-author, with Susan St John, of a new book on ageing and superannuation called A Super Future. The following is the text of a talk that Anne gave to the recent Women's Health Summit held in Wellington. All over the world, women can now expect to live longer than their mothers did. Life expectancy is higher than it has ever been before. In New Zealand, women who reach 65 can expect to live for another 19 years. Men can expect to live for another 15 years. The reasons for this male/female gap are complex. However, it is getting smaller. The other marked difference in New Zealand is between Maori and non-Maori. Unlike the difference between men and women, most of this gap is due to deaths before the age of 65. Maori death rates for the year after birth, for men aged 40 and over, and for cardiovascular disease and lung cancer are still high compared with non-Maori rates. But the overall difference is much smaller than it was even 20 years ago. For those who reach 65, it is now narrow. Life expectancy is still growing. By the third decade of next century, it's likely that men of 65 will live another 19 years, on average, and women just over 22 years. This is probably the first time in human history that there has been such a marked lengthening of life expectancy for people who reach 65. The increase in average length of life this century has been greater than the increase throughout the whole of human history since pre-Roman times. It is so large, says a US demographer, that we have almost become a different species. 'Retirement used to be rare, because most people died during their work life. At least one parent had usually died before the last child left home. Orphans were common and old people were scarce. Now the opposite is true...No society of the past has had to cope with these issues.' (J.E. Barren, "The Process of Aging", in A. Pifer and L. Bronte (eds), Our Aging Society, Paradox and Promise, WW Norton and Co 1986, p.267.) Other authors point out that at the same time as horizontal family ties between men and women are fragmenting, and men's ties with their children are often very tenuous, vertical family ties among women are probably stronger than ever. It is now common for four generations of women to be able to interact. *The greying of the population* But living longer is only half the story. The other half is about the changing shape of the population as a whole. Not only are women living longer; we are also having fewer children. The inevitable result will be more older people, a majority of them women, and fewer younger people. In fact, New Zealand is moving much more slowly along this path than similar countries overseas. European and Japanese birth rates are already well below replacement level. Ours are not nearly as low. In this country, births will go on outnumbering deaths for the next 40 years. So why are we being told to panic? *Something to celebrate?* Longer life is an ancient human goal. Yet there has been remarkably little celebration of reaching it among Pakeha in New Zealand, or most other developed countries. Instead, the old are being painted as some kind of looming "grey peril". Why is this happening? Older people don't usually do full-time paid work. They get their income solely or mainly from a tax-funded pension of some kind. In market terms, they produce nothing. They consume too little of what the market sells and too much of what the state provides. And they rely on others to pay for it all. What's more, they need younger people to look after them. Taxes and caring interfere with paid work. So the growing weight of numbers of "unproductive" old people, we are told, threatens to sink the whole economy. *Sexism in the scare tactics* The fact that more of the old are women seems to make it all much worse. Here is one of the National Business Review's gentlemen columnists waxing apoplectic about the future cost of health care: "an old-old female costs the government 10 times as much as a 20-year-old". You can almost hear him thinking "and she's 100 times less use to us chaps". The headline for this piece was, "Elderly's welfare appetite gives everyone a pain." (National Business Review, 4 July 1998.) Such claims appear to be deliberately aiming to set the young against the old That means they are trying to set children and grandchildren against their parents and grandparents. Even more absurd, they are trying to set today's baby boomers against their own future selves. *Affordability issues* Why is this being done? The idea seems to be to make us fear the bogey of ageing so much that we will all stop expecting any kind of liveable income from the state. Then more and more of us will start demanding tax cuts, so we can save enough to do without a pension and buy our own health care. If taxes are cut enough, then of course the state won't be able to pay. So the prophecy will become self-fulfilling What's good for women is good for men As we all know, women earn less than men and enter old age with lower assets than men, mainly because they do more unpaid work - including caring for the old. Thanks to the failed campaign for compulsory private saving, we know that at least 85 percent of all women, and 40 percent of all men, do not earn enough over their whole working-age lives to save what they would need to provide an income in old age, even at the most basic level. Whatever arrangements we make for income in old age, they must meet the needs of women. If they do, we can be sure they will meet men's needs too. New Zealand's unique pension system does this more successfully than almost any other. It also avoids many of the problems facing systems elsewhere. This is largely because, first, it does not try to link the amount you get to the amount you previously earnt from paid work. People who earnt little or nothing - and who are much more likely to be women - get the same pension as others. High earners do not get a higher pension. Secondly, our system treats women and men exactly the same, so that women get a pension in their own right, not as their husband's dependents. Professor John Campbell has called it the best public health measure we have for the old. But it has to be defended. The attack on it by National in October will certainly not be the last. *The myth of universal institutionalisation* Exaggerated claims about the cost of health care for the old reinforce the belief that old age inevitably brings a depressing (and expensive) decline into disease, decrepitude and total dependence. When the Senior Citizens Unit held consultations around the country in 1993, it found a widespread assumption that "most older people will eventually require residential care services." Yet the majority of people will not go into this type of care at all. Of those who do, few spend many years in it. A recent US study suggests that of those who turned 60 in 1990, well under half (43%) are likely to enter residential care at all, and only 9 percent will use it for as long as five years. These figures are probably fairly comparable with what will happen in New Zealand. What is really happening to health in old age? Is it getting worse, or better? The answer is that like so many other fields to do with old age, we don't really know, because we haven't gathered the information. As a major report on care for older people put it, "Regrettably, there are no routine measures of disability and well-being in the older population which monitor changes over time." (D.Richmond et al, Care for Older People in New Zealand, A Report to the National Advisory Committee on Core Health and Disability Support Services, 1995, p.24.) *Health in old age* Older people are more different from each other than people in any other age group, not only in health but in every other respect. People's state of health in old age depends heavily on how they have fared in previous years. The most important factors are income and housing. The New Zealand evidence suggests that health inequalities are largely due to socio-economic inequalities. This helps to explain why the decline in cardiovascular disease has been concentrated in the better-off groups, widening the gap between them and others. At all ages, too little physical activity is one of the most important risk factors for cardiovascular disease. The others are raised blood pressure, raised serum cholesterol, poor nutrition (too much fat and salt, too little fresh fruit and vegetables), heavy alcohol consumption, and smoking. These are all bad for health generally. A high proportion of older people currently have all these factors. So even small improvements across this age group can have a big impact on their cardiovascular health. This in turn can lower both the social and financial costs of illness. Relatively cheap, high value-for-money public health promotion would achieve this. But it must be targeted to the old, as well as the young and middle aged. The physiology of old age is different from that of youth. When old people become ill, their system deteriorates faster. The body is less able to repair itself. There is also a higher risk of complications. Disability in older people is commonly the result of new underlying illness. So it's very important to deal with any identified health problem quickly. Otherwise irreversible deterioration can set in. The new booking system for public hospital surgery ignores the known facts about ageing. Scoring is based on factors such as level of pain, suffering, or disability. For cataracts, a patient has to be unable to drive, or to read without a magnifying glass. For hip surgery, a patient has to need excessive pain medication to sleep, and have trouble walking any distance. By the time the old reach this stage, they have already lost their independence. They are likely to have deteriorated so badly that it may be impossible to restore independence. Loss of independence inevitably brings a need for more care - everything from meals on wheels to round-the-clock nursing. The downstream costs of this loss are much higher than the costs of providing co-ordinated health care through thorough, expert geriatric assessment and prompt treatment, followed by effective rehabilitation. But this is not what is happening under the current fragmented regime. Last year the various organisations involved - Age Concern, Alzheimers Society, Association of Gerontology, New Zealand Council of Christian Social Services, Home Support Association, HospitalsAssociation, and Licensed Rest Homes Association - joined forces to form the Older People's Health Forum. In 1998 they produced a policy statement. (Key Outcomes for the Health of Older People in New Zealand: Recommendations to the Minister of Health, January 1998.) It stressed the need to provide an integrated, collaborative, nationally consistent approach to health care. It needs to be supported. *The grey contribution* Tax revenue transferred to older people, for pensions, health care or anything else, does not disappear out of the economy. Most of it is immediately spent on goods and services. This sustains and creates paid work. Most important of all, older people are not a useless burden. Provided they have an adequate level of income, housing and public health care, they can and do continue to contribute to their families, communities and society ~ hundreds of different ways. Our society could not function without them. Our new book, A Super Future? The Price of Growing Older in New Zealand (Anne Else and Susan St John, Tandem Press, 1998) explains how the New Zealand pension system works, why it is so important to keep it broadly in place, and how this can be done. We hope it will give you the information you need to make sure this happens. But it also points out that we need to go much further. We urgently need to start thinking sensibly about what it means to grow older as a society. It makes no sense at all to go on seeing what is now a third of our lives as nothing but a kind of postscript. Women are far better placed than men to lead this shift, and the time to start is now. At stake are all our futures. Results of second rounds of breast screening pilots With BreastScreen Aotearoa now launched, it is timely to revisit the pilot programmes for the lessons they offer in the problems of screening. Sandra Coney summarises some of the results of the evaluation of the second round of screening in the two pilot programmes (1994-96). Information systems are critical to screening programmes. As a reduction in deaths will not show up until seven to ten years after screening starts, surrogate measures have to be used to predict success. In New Zealand these were established in the Interim National Quality Standards and they include such things as screening coverage, times taken at various points in the programme, quality indicators for the actual x-ray taking and reading process, number of women recalled and number of biopsies taken, cancers detected, the size of the tumours and the kinds of treatments women have. Knowing how well these indicators meet the quality standards can only be ascertained if information is constantly and consistently being collected and scrutinised. *Information failures in Otago* This proved the biggest problem for the Otago Pilot Breast Cancer Screening Programme which seems to have an irreparably flawed information system. Information needed to assess whether the programme was meeting the Quality Standards was in many cases missing. This included information on such things as waiting times for women to receive their results or recalls, ethnic origin of women participating, and linkage to the National Cancer Registry. The latter problem meant that the interval cancer rate is not known so that it was difficult to assess the important indicators of the sensitivity and specificity of the programme. *Excess x-rays* As in the first round, a significant number of women still had more than four films taken (33%) and this proportion varied between centres. At Kew Hospital, 42% of screens involved more than four films, and in the mobile units this occurred for 35% of women. There was also a high referral for assessment rate in the age group 50-54 years relative to the cancer detection rate. *Positive results* Other indicators were more positive. The rescreen rate was 86% and 86% of women referred for assessment received a final diagnosis after a single follow up visit. Twenty six percent of cancers detected in the prevalence screen of round two (women being screened for the first time) were under 10 mms; 36% of cancers detected in the incidence screens of round two (women who have already been screened) were under 10 mm; 16% were DCIS. The programme detected 70 cancers in round two, bringing the total number of breast cancer cases found in the 17293 women screened to 204. This a higher rate of breast cancer than other parts of the country. The reasons for this are not clear. *Waikato's problems with invitations* The major challenge for the Waikato pilot was the method by which women are asked to participate in screening. The pilot used electoral rolls and found that this resulted in a large number of invit-ations going to people who were not eligible for the programme. Slightly over 9% of all invitations were sent to males, women who were 65 or over or women who lived outside the area. A large number (6%) of invitations were returned undelivered and around 1% went to dead people. As it was considered unethical to invite women and then not screen them, this resulted in a large number of women outside the limits of the programme being screened, over 11% of all those screened. *Response rates low* The response rate to an invitation to have a first mammogram had reduced from the first round. In the first round the response rate was 67%, but in the second round it was 59%. There was an especially low (50%) response rate for those women being asked for the first time. The evaluators said that this low rate was of great concern because these women should be participating every two years for the next 15 years. Because of these difficulties the pilot evaluation recommended that the method of invitation be trialled before being adopted by the national programme. *Maori coverage low* The Maori rate for coverage of the eligible age group increased from 34% to 45% over the two rounds but is still much below the Pakeha rate which increased from 67% to 69%. The overall coverage was 67% which is described as 'suboptimal' and below the target needed for a cost-effective programme. The national target for coverage is 70%. Sixty-nine percent of those eligible women screened in round one returned for a second screen. *Workforce woes* The other major problem encountered by the pilot was recruiting and retaining a trained workforce. The pilot had difficulty filling position for radiographers - eventually two were brought here from the UK, but at times the mobile only screened three weeks out of four due to staff shortages. *Delays in diagnosis* Another area of concern was the low rate of women receiving a diagnosis before they had surgery. An earlier review of the pilot had recommended that this rate be improved. The National Quality Standard is that 70% of women with cancers be diagnosed pre-operatively by cytology and/or core biopsy. This was not achieved by the pilot which had a rate of 37%. Some women had to attend for asses-sment on more than one occasion to achieve a diagnosis adding to the anxiety of women and their families. However, the purchase of new equipment in late 1995 now allows a diagnosis to be made on the assessment day. In this round 75 women were diagnosed with breast cancer, eight of which were DCIS. Twenty-six of the cancers were less than or equal to 10 mm. *A plea for consistent reporting* It is to be hoped that when the programme goes nationwide, evaluation reports are reported consistently for the whole country. The Waikato and Otago pilots have adopted different reporting styles and do not always report on the quality standards as they are set out in the standards themselves. This needs to be remedied so that it is easy to see how the standards are being met and to allow comparisons between regions. New screening advisory group The Health Funding Authority has announced the membership of the new screening advisory group. The group will be chaired by Bernie Mullin who was until recently Manager Public Health Prevention programmes in the HFA. Her successor is Julia Peters. The members are Anne Allan-Moetaua - Pacific islands representative Jo Barnaby - Maori consumer representative Barbara Robson - consumer representative Ian Campbell - breast surgeon (Waikato pilot) Brian Cox - public health physician and epidemiologist (Otago University) Alison Denyer - GP Terri Green - health economist Betsy Marshall - health promotion and Cancer Society Clint Teague - pathologist Madelaine Wall - radiologist The group will report to the National Director of Public Health, Bette Kill. Terms of reference of the group are provision of a high level overview of prevention programmes, including a forum for the discussion of issues relating to the current national breast and cervical screening programmes; advice on the evaluation and monitoring relating to the population based screening programmes; advice of strategic policy issues relating to prevention programmes referred to the group; cultural advice and consumer perspectives regarding the improvement of policy delivery. Infertility drugs and ovarian cancer A new study has failed to confirm an association between ovarian cancer and drugs used to stimulate ovulation during infertility treatment. Researchers at Australia's Monash University studied more than l0,000 women who underwent in vitro fertilisation treatment 1978, and 1992. Just over half the women studied used at least one cycle of ovarian-stimulating drugs and the other group did not. Researcher say there was no difference in the incidence of ovarian cancer in the two groups with three cases of invasive ovarian cancer occurring in each group. The Monash researchers are now conducting a similar study involving about 30,000 women. The executive director of the American Society of Reproductive Medicine, Dr J Benjamin Younger says the on-going multi-centre studies in Australia have important ramifications for all practitioners and patients engaged in fertility treatment. 'While several studies have suggested some evidence of a link between ovulation drugs and ovarian cancer, there have been an equal number that have shown no link between the two.' It is imperative that patients be given all the available information about any treatment so they can make the most informed decision about their care, according to Dr Younger. One smaller Israeli study has come up with inconclusive results. Researchers from the Chaim Sheba Medical Centre say they want to follow patients for another ten years to get more definite answers. In an interview with Reuters, Dr Lerner-Geva from the Centre points out pregnancy itself is a protective factor for both ovarian and breast cancer. 'If there is any risk involved with the drugs, it will be hard to measure one factor against the other - how much risk against how much protection,' she says. Ref: JAMA Women's Health Information Center, 9 October 1998 Prophylactic mastectomy may not protect against breast cancer There is an urgent need for more study into the outcome of performing prophylactic mastectomy on women with the genetic mutation predisposing them to breast cancer, according to the Professor of surgical oncology at Guy's Hospital in London. Professor Ian Fentiman describes prophylactic mastectomy as 'a lottery with no winners' and says the price of neglecting research will be high. He says germ line genetic mutations are responsible for only 5-10% of cases of breast cancer but clinicians are faced with many worried individuals who have pathological mutations. 'These consultations are as difficult for the doctor as for the patient since no proved preventive approaches exist. Though options such as tamoxifen will probably reduce the incidence of breast cancer, there is nothing to obliterate the risk. Intensive surveillance is an option but without proof or benefit.' Resorting to the desperate measure of bilateral prophylactic mastectomy may be a vain hope for women, according to Professor Fentiman. He says prophylactic mastectomy was performed on a large number of United States women for a range of ill-defined indications but says the risk of cancer may have been overestimated. Professor Fentiman also points to the difficulty of removing all subcutaneous mammary tissue. Experiments on rats show removal of ostensibly 100% of the mammary tissue had no effect on subsequent development of neoplasms. He believes similar problems may also occur in humans. 'Unless action is taken, another 10 years will see us in the same state of ignorance.' He says randomised trials would be difficult and argues for a legally binding system of registering all women who have undergone any kind of prophylactic mastectomy. 'This would help determine the relative efficacy of the procedure in high-risk individuals. 'Were all cases of prophylactic mastectomy to be reported to a central registry, linked to cancer registries, individuals subsequently diagnosed with breast cancer could be identified.' Pathologists are the most reliable source of information for cancer registries, according to Professor Fentiman. Ref: BMJ 1998; 317:1402-3 Deaths following sex soon after childbirth The deaths of two young British women have drawn attention to the risks of fatal complications as a result of having sex too soon after childbirth. In a recent issue of The Postgraduate Medical Journal, doctors describe two young women who died of air embolisms (air bubbles in the major arteries to the heart and brain) while having sex within eight days of giving birth. Lead author and pathologist at Bradford Hospital's National Health Service Trust in Bradford, Dr Philip Batman says women are more vulnerable to air embolisms soon after childbirth than at other times. Air forced into the uterus during sex can enter the bloodstream through blood vessels torn during delivery. Doctors used to recommend women avoid sex for six weeks after childbirth but the rules have been relaxed in recent years, says the chief of the high-risk obstetrics group at the Yale School of Medicine Dr Joshua Copel. 'Six weeks is an arbitrary time frame and many women probably disregard our advice anyway.' The American College of Obstetricians and Gynaecologists recommends women can usually have sex in about three or four weeks or when they feel comfortable, a sign the uterus has healed. Obstetricians say it also takes this long for incisions outside the vagina or from a Caesarean section to heal. Earlier research found pregnant women are also at increased risk because air can become trapped between the sac containing the foetus and the uterus wall, then escape through blood vessels on the surface of the uterus. However most doctors sanction intercourse during pregnancy because the risk is so slim, according to the American College. Ref: New York Times on the Web, 6 October 1998 Palliative chemotherapy - more harm than good? Only a quarter of patients feel better after having palliative chemotherapy for advanced breast cancer, according to a study reported in the British Medical Journal. 'When I first went on to the oncology wards I found it staggering that patients had their tumours measured to assess shrinkage from chemotherapy but no one was asking them if they actually felt better', says researcher Amanda Ramirez, professor of liaison psychiatry at Guy's, King's College and St Thomas Medical School. Of the 155 women who signed up to this preliminary study, one third dropped out because they decided not to continue with treatment or because they died and only 26% of the women reported they felt better after chemotherapy than before. A further 19% felt the same after treatment as before, while 22% felt worse. Professor Ramirez and her team interviewed the women to assess overall sense of wellbeing before treatment, after six weeks and after treatment had finished at about 24 weeks. 'We were also interested in identifying who would be least likely to benefit from palliative chemotherapy,' says Professor Ramirez. 'If we can identify those women who at six weeks - after two cycles of chemotherapy - are likely to come out of treatment feeling worse, then we could either not give it to them or stop treatment after two cycles.' The researchers identified having a dry mouth before treatment as the main reason why women decided not to finish the full course of chemotherapy or felt worse after treatment. Other possible factors include age, frailty, patient motivation and previous experience with chemotherapy. Ref: BMJ 1998; 317: 1407