We must set limits, for the sake of little girls

There’s no place for ethnic arrogance, but genital mutilation is different, writes Karen Kissane.

NINETEENTH-CENTURY Westerners, confident of their cultural superiority, had no qualms about trying to stamp out ugly foreign customs. Britain’s empire builders banned the Indian tradition of suttee, in which Hindu widows were burnt on their husbands’ funeral pyres; Europeans led the fight against foot-binding in China.

Colonialism had many evils, but it shone a few lights in dark places, stopping some peoples from eating their enemies and others from leaving their girl babies out to die. But ethnic arrogance has no place in multicultural worlds like today’s Australia. How, then, do we deal with minority group traditions that the majority abhor, such as genital mutilation of little girls? How far should tolerance for diversity and respect for the values of others stretch? It has been known for some time that people in some ethnic communities, particularly those from Africa and the Middle East, are circumcising their daughters. Some girls are done on kitchen tables here, some are sent back to the old country and others, police alleged several years ago, are done by Australian doctors. “Female circumcision” ranges from removal of the hood of the clitoris or the clitoris itself to infibulation, in which the clitoris, the labia majora and the labia minora are cut out and the remaining flesh sewn together, leaving a small opening for urine and menstrual flow.

It effectively castrates women, leaving them with sexual pain instead of pleasure and ensuring their chastity as maidens and their fidelity as wives. It is a 5000-year-old tradition that parents still inflict on their daughters in order to make them marriageable and acceptable to their own communities. While no hard figures are available, federal health and legal authorities have heard anecdotal evidence of it here and say it is reasonable to assume that migrants such as African refugees are bringing the custom with them.

Australia has been slow to deal officially with the problem. Chief Inspector Vicki Fraser, the head of Victoria’s community policing squad, warned six years ago that the issue was being ignored because of a reluctance to create tensions in a multicultural society. Federal officials contacted for this story sighed that they knew the issue had been a time bomb, but that there had been concern about how best to deal with it without creating a racist backlash. How can you publicise an issue like this without arousing anger and disgust in other Australians? How do you convince women who have been circumcised that their daughters should not be deformed this way without making the mothers feel like freaks? Mutilation, after all, is in the eye of the beholder’s culture. Our criminal law does not recognise any right to consent to bodily harm, or any right by parents to consent to bodily harm to their children.

But we do have the right to consent to medical procedures that are painful and non-therapeutic, such as cosmetic surgery. The desire to have a nose broken and reshaped, a face cut open and tightened, or tissue removed from a large breast also springs from a longing to be accepted by the community. It may be sad but it is not, in our culture, considered bizarre.

But genital mutilation is different. It deprives women of a normal physical function, leaves them with serious long-term health problems and is done when they are children and cannot give informed consent.

Australian political leaders have long condemned it and threatened legal consequences for anyone involved, but its legal status is still unclear. The Australian Law Reform Commission has argued against special legislation criminalising it, saying that offenders could be charged under existing criminal law, and that, in any case, education would be a better tool for change than prosecution. The Australian Family Law Council, which advises the Attorney-General, recommends much stronger action.

The council’s discussion paper on the issue, due out next month, recommends federal legislation outlawing genital mutilation. It also proposes making it a criminal offence to send a child out of the country to have it done elsewhere. If the proposal is adopted Australia, like Europe, will jail offending parents. The council has rejected the argument that genital mutilation is a religious custom.

The chairman, John Faulks, says religious leaders deny that it is a Muslim practice or required by the Koran. Mr Faulks says it is important that laws be passed to clarify doubts about whether such cases can be prosecuted and in order for Australia to comply with its obligations under international conventions on the rights of the child. This, then, would be the limit of multicultural tolerance.

There have always been limits. We do not allow Muslims to cut off the hand of a thief or stone an adulteress. People from polygamous cultures must respect our bigamy laws and men from more patriarchal societies must learn that in this country, children of a broken marriage do not automatically belong to the father. Jehovah’s Witnesses are not permitted to refuse a sick child a necessary blood transfusion. The right of a child to protection outweighs the right of the parent to follow tradition.

Genital mutilation should be criminalised if migrants are to get a clear message about how serious a practice it is. Opponents of criminalisation argue that it sends the problem underground, causing more hardship for the girls. But that argument, like the argument against mandatory reporting of other forms of child abuse, makes no sense; the problem is already beyond the law. Even in the countries from which these migrants come, human rights activists oppose the practice.

But change must also come from within. Education programs should be set up to ask parents to examine their beliefs and to ask mothers to remember their own shock and pain and grief. The American writer Alice Walker, whose last novel was about a woman who had been mutilated, has been asked why women have helped weave such social and religious significance around what is, in essence, a horror. She said that people carrying an unendurable hurt create an alternative reality to make the pain more bearable, and that this is what must change if we are to stop attacks on the innocent face of the vulva.

First published in The Age.

This is your life

Karen Kissane

THE girl was rushed to hospital with complications following an abortion. She begged staff to shield her from a relative working in the hospital who might tell her conservative Indian family.Staff put the girl in a different ward to where the relative, a nurse, was stationed, but failed to tell the girl she had the right to a “manual” admission, with her details kept in an old-fashioned paper file. Instead, her case was recorded on the hospital’s computer database. Here it was found by her relative, who was allegedly in the habit of trawling the system for familiar names.

The result, says New Zealand Privacy Commissioner Bruce Slane, was “a complete breakdown in family relations”. He tells the story to illustrate the sensitivity of health information and the sometimes devastating consequences of its improper release – as well as the ease with which health databases can be violated.

It is a New Zealand story, but it has implications for Australia. The computer revolution is about to hit your doctor’s surgery – and link it with your pathologist’s lab, your local hospital’s emergency room and even those discreet clinics where you might seek treatment following a less-than-discreet sexual encounter.

A Federal Government taskforce is investigating what form this country’s national “E-health” records system should take, and the Victorian and NSW governments have already launched pilot programs for cyberspace sharing of information between doctors and hospitals at a state level.

The information age has opened up Orwellian possibilities for the detailed tracking of individuals’ use of health-care services and the linking of all their medical encounters on one electronic health record (EHR). It could contain all the clinical information now recorded on paper: the symptoms that led you to seek a consultation, the doctor’s diagnosis and the treatment offered.

There are potentially great benefits. Patients should face fewer unnecessary repeat tests or medical accidents. Doctors would be able to get a complete patient history at the press of a button. Researchers could scan the experiences of millions of people to identify nationwide trends in illness and the effectiveness and safety of treatments. And governments hope to cut costs and better assess the performance of doctors and hospitals.

But computerisation raises big questions about how to mediate the sometimes competing goals of all these “stakeholders” in the health system.

Who decides what should and shouldn’t go on to an electronic record? How should privacy be protected, and to what degree must patients relinquish it to satisfy goals identified as being “the common good”? Should organisations collecting information patients reveal as part of their confidential health care encounters be able to use or sell it for profit?

Bureaucrats keen to contain costs and researchers hungry for mass data are among those who have pushed for a centralised database to which every Australian would be connected lifelong. Such a database would be overseen by the Health Insurance Commission, which administers Medicare and the Pharmaceutical Benefits Scheme.

The centralised model was supported by a 1998 report of the House of Representatives Standing Committee on Family and Community Affairs inquiry into health information management. It recommended that individuals carry health “smart cards” and that the medical details on the cards be backed up in a national data warehouse.

“Centralised” has since become the “C-word” of the debate because of concerns that it might arouse public alarm. Parties privy to discussions on the issue privately say there are still some in Canberra who want the centralised model. Publicly, however, stage proponents are talking now only of a system for linking multiple databases.

This means that your separate carers – GP, specialist, chemist, hospital – would each keep their own computerised file on you, but it would be possible for each to access material from the others electronically.

If you arrived in casualty unconscious, hospital staff could call up your GP’s notes to check on your history of blood-clotting problems or allergies to medication; if you needed a new prescription from your GP, he could call up your hospital records
to confirm that today’s prescription would not react adversely with medicine you were given last time you were admitted.

Theoretically, doctors would need your authorisation, and perhaps your smartcard, to do so, although they would probably have the right to override lack of permission in an emergency. And more sensitive information might be “masked” so that a higher level of access was required to read it. “There’s no need for the GP at the 24-hour clinic to know about the three abortions you had when you were 15,” says Dr Sandra Hacker.

Hacker is the AMA representative on the National Health Information Management Advisory Council, the organisation charged with assessing the options. Its Electronic Health Records Taskforce is due to report to health ministers on the issue in July.

Hacker says the AMA is opposed to a central warehouse because of privacy concerns, and she believes the public would be outraged by it. But while she thinks it an unlikely option, she cannot rule it out. “If that’s what the Government legislates, that’s what will happen.”

Patient advocates are not even reassured by the more moderate alternative of links between databases. “The effect (on privacy) may be much the same either way,” warns Meredith Carter, executive director of the Health Issues Centre.

Supporters of a comprehensive system, such as Dr Chris Kelman, a researcher with the National Centre for Epidemiology and Population Research, point out that computer systems containing sensitive information are already in use in banking and the military.

In an article he co-authored in the Medical Journal of Australia , it was suggested that an EHR could even be stored as a secure web page. He says, “The technology is capable of maintaining privacy. Look what’s happening with encryption.”

But if computer hackers can turn a NASA satellite in space, how safe is even the most highly encrypted health records system?

“Scary, isn’t it?” says Dr Sam Heard. Dr Heard, director of the general practice education and research unit at the Northern Territory clinical school of medicine, Flinders University, is not opposed to e-health. He has been working for 13 years on a project called the Good Electronic Health Record. He favors what he calls the “radical” model, where patients themselves would carry their record or choose a trusted third party to store it for them.

Databases worry him. “The more people have access (to a system) and the larger the database, the more valuable it is and the more at risk it is,” he says. “How many people would be using it at any one time? Imagine the security nightmare.”

Dr Heard warns that hackers can download from the Internet “Trojan horse” software that allows them to infiltrate a system and force it to spit out information. It is possible to make a system completely secure, he says, but that would also make it close to unusable.

A less sinister but equally worrying problem is internal computer glitches. Last year, several thousand Americans’ patient records were accidentally displayed on the Internet for two months. A gremlin in the database of the University of Michigan Medical Centre left records detailing treatments for specific medical conditions, employment status and social security numbers available to anyone tapping into the centre’s website.

While the debate about the security of the technology is important, patient-advocate Carter sees it as a secondary one. The real point is that “any system you build is going to rely on human beings to operate it, so you will always get human corruption and human error”.

Carter says the NSW Independent Commission against Corruption reported in 1992 that it had found “a widespread commercial trade in personal information, including Medicare data, between officers of government agencies and other institutions which should know better such as banks, insurance companies and debt collectors”.

Dr Heard worries about the potential for celebrities or even ordinary individuals who have aroused animosity to be targeted and blackmailed or humiliated by the exposure of their health history. “How much would knowledge that (a former prime minister) had cirrhosis of the liver due to alcohol be worth?” he says.

Violation of computer systems by government employees is still being reported. In February, a Queensland inquiry into the misuse of that state’s police database was told that more than 30 officers at one station had given individuals’ details to the station’s cleaner, who moonlighted as a debt collector.

In January, the Melbourne Magistrates Court was told that a customer service officer for the Health Insurance Commission, Mieng Tang, had used his position to access the Medicare histories and personal details of up to 90 people a day. Most were Asian women and women who had been on IVF treatment. His defence was that he had been “bored”.

Here was illustrated both the blessing and the curse of computerisation: Tang was able to flick through many more files than would have been possible if he was handling more cumbersome paper folders, but it was the audit trail of the computer system that detected his illicit access.

Carter points out that these audit trail safeguards were set up because the law requires it of databases held in the public system. But she says the private health sector, which will self-regulate privacy matters under legislation currently before Parliament, will not face the same stringency.

Lastly, there is the potential for deliberate privacy “breaches” for reasons that those controlling the data think justifiable. There was an outcry in 1987 when teenage girls were listed to testify about their under-age abortions in a court case against a disreputable Melbourne gynaecologist. “People said, `Forget the charges; what are you doing to these girls?”‘ Carter says.

In America, pharmaceutical companies have bought health insurance companies so that they can access patient records and direct market to both patients and doctors. Hacker says Australian doctors are now being approached by companies looking to buy their practices.

In Canada, the Privacy Commissioner, Bruce Phillips, reported that information technology also puts a great deal of power into the hands of public servants. He told of an Ontario woman who, supported by her doctor, sought breast reduction surgery to alleviate chronic pain in her back and shoulders. “The health bureaucrats responded by demanding photographs before agreeing to foot the bill,” Mr Phillips said.

On a bigger scale, the greater political acceptance of the role of market forces has led to widespread “data mining”, the sale of mass health information for commercial use. In Iceland, every citizen was tested so that their genetic makeup could be recorded on a DNA databank now managed by a commercial biotechnology company.

Medical data originally given by patients to Britain’s National Health Service in good faith is now under the control of organisations free to sell it to the highest bidder, according to Professor Stuart Horner, the 1998 chairman of the British Medical Association ethics committee.

And Australia’s Health Insurance Commission is already examining how best to sell “de-identified” material from the Medicare and PBS databases. “They are going to do whatever they can within the bounds of their political ability to exploit and mine that resource to get revenue,” says Stephen Millgate, executive director of the Australian Doctors’ Fund.

He says the HIC’s sales aims, expressed in its 1998-99 annual report, “are written in hard-core commercial language; it’s aggressive, it’s about customers and marketing and being competitive”.

Millgate is the greatest doomsayer in Australia’s EHR debate. He is convinced any model adopted by government will be a disaster because its goals will be administrative and budgetary rather than patient-focused. “And there will be no savings; the cost of putting up a system which is accurate is enormous. It will chew its own head off in costs in the first two or three years.

“There are some moral issues here too. Half the world doesn’t have basic health care, while we’re going to spend millions in Western democracies to know everything about everybody’s health. What groups will be unfunded so you and I can have a continuous record of every ache and pain?”

Millgate doubts promises that patients will remain free to choose whether to “opt in” to the system. “What you will find happening is that if you don’t `opt in’, you won’t get certain rebates. It’s quite easy for governments to say something’s not compulsory and then change the financial incentives to make it crazy for someone to resist it.”
A spokeswoman for the federal Health Minister, Dr Michael Wooldridge, says the Government knows that Australians are very protective of their health privacy and that any system would have to be voluntary, with information kept only in summary and patients having the right to edit their records. “If they didn’t want to admit that they were on a psychiatric drug, for instance, they could just take that off.”
While protecting privacy, this raises its own problems. A patient might suffer an adverse event because doctors acted on the assumption that the EHR was complete when, in fact, essential information had been left off it. Who is then legally responsible: the patient who requested the information withheld from the record, the doctor who agreed to withhold it, or the doctor who made a mistake because he was uninformed?
But accurate, accessible records could be invaluable for the chronically ill. Dr Wooldridge’s spokeswoman points out that almost a third of hospital admissions are of elderly people, and most of them have been made seriously ill by interactions between their many medicines.

It is these people that Hacker predicts will use and benefit from linked EHRs. But groups such as her own customers, psychiatric patients, are likely to avoid them, she says. Electronic records of therapy consultations accessible to anyone other than the treating doctor “could make psychiatry almost unworkable. I see politicians, judges, other doctors: they’re not going to want to reveal things to me if they think others will see it”.

Slane, New Zealand’s privacy advocate, is concerned that systems in that country have too often been set up to spread an unjustifiably wide net over patients whose views have not been taken on board. “It seems to be assumed that having people’s health information is a jolly good thing and a use will be found for it sometime in the future … with public opinion a risk to be managed later,” he says.

This ignores the central issue. “The essence of privacy is respecting what other people think is important to them as private, rather than us saying what the values are and that they should apply to everyone always.”

Health Records: The upside

While away on work, Mr Smith, a truck driver, sees a GP. He complains of severe headaches and asks for strong pain relief. What the doctor sees is an unkempt man from out of town requesting a drug of addiction. With Mr Smith’s permission, the GP calls up his medications history to check that Mr Smith has not been misusing prescribed painkillers. He hasn’t.

But a prompt pops up on the screen telling the doctor that the national adverse events register has recently detected an interaction between two drugs Mr Smith is taking for other conditions. Surveillance of the national health records system had found that people taking both often suffered hypertension and severe headaches. The GP prescribes alternative medication for Mr Smith.

– An imaginary scenario from “An integrated electronic health record and information system for Australia?” Medical Journal of Australia.

Health Records: The downside

At the height of Western Australia’s abortion law row in 1997, a woman who had suffered several traumatic childbirths and miscarriages, followed by a severe stroke, found herself pregnant again. Her husband’s vasectomy had failed. She feared another difficult pregnancy might kill her and booked a termination.

The following day, an elderly man phoned and asked for her by her full title, including her middle name. He told her he knew she was due for a termination and sterilisation at the hospital concerned, and that she would rot in hell. More abusive calls followed and a poem “written” by an aborted child to its mother was hand-delivered to her home. An investigation failed to discover how her details were accessed and leaked, although it noted that a staff member had phoned an anti-abortion group from the hospital during the relevant time-frame.

First published in The Sunday Age.

Britain ponders its sickly $20 billion e-health experience

BRITAIN’S push for e-health records won the “most appalling project” prize in the annual Big Brother awards of Privacy International in 2004. That, it turns out, was only the beginning of the project’s troubles.
It is eight years and £12 billion ($19.9 billion) since Britain set out to establish a shared e-health record for 50 million citizens as a central plank of its overhaul of health and computers, in what was dubbed the world’s largest civilian IT project. Now the rollout of e-health records is over time and over budget, dogged by savage criticism and languishing from lack of use.
Earlier this year, doctors called for a boycott of the system after it was found one in 10 records uploaded contained out-of-date information, including errors about patients’ medication and drug allergies. This threatened patient safety, they said.
Earlier controversies erupted over patient consent. Britain has an opt-out system; patients must apply to be exempted from having a shared e-record and, if they don’t, their consent is “implied” and the record uploaded. But research showed many people had not received notification of the system and did not know it existed. Some who tried to opt out were told they must first have a face-to-face session with an “adviser”, and others were told they could no longer receive health care if they did not have an e-record.
A study published this year in the British Medical Journal found doctors did not often use the new records. They were accessed in only 20 per cent of medical encounters in which one was available (1.5 million are uploaded to date). When they were used, e-records led to longer consultations. While they “added value”, particularly with complex medication regimes: “We observed no cases in which [they] unequivocally made care safer, or in which absence of one seemed to make care unsafe.”
The authors concluded the benefits of shared e-records were “more subtle and contingent” than anticipated and that implementation was a lot of work. They also noted: “No country with a population above 5 million has successfully introduced a shared electronic patient record.”
There are fears the health IT revolution might end up costing up to £50 billion – half the annual health budget. In 2007, when the House of Commons public accounts committee found the scheme’s pilot projects were two years late and unlikely to offer any benefits to patients any time soon, its chairman warned the project was turning into “one of the biggest IT disasters of all time”.

First published in The Age.

Finding hope in a healing place

It has taken many years for Ian Gawler’s holistic approach to helping cancer patients to take hold. But his methods are finding currency among conventional medical practitioners – and helping thousands of people deal with their illness.
PEOPLE are gentle with each other here. A couple married for more than 40 years kiss before even the briefest parting. A husband caresses his wife’s hair as she lies propped on a mattress and pillows on the floor at his feet, too weary to sit up. Her slender arm rests on her rounded belly, which is curved as if it is carrying a baby rather than a tumour.
No one here has to be told that life is fragile, and loved ones precious.
The word cancer comes from the Latin word for crab, that little creature that scuttles so quickly and so unobtrusively across a landscape. The word has also become a metaphor for anything evil that quietly spreads and destroys. Here, in a room of 40 people it has touched, it has many names.
A Kiwi nurse-artist calls her ovarian tumour “Jenny Craig” because of the sudden, dramatic weight loss it has caused. Another woman, a mother of three, found that the real name for her “slight cough” was advanced lung cancer. Helen Emmett, who has two small children, one only a year old, discovered that the name for that odd lump in her groin was stage-three melanoma (skin cancer).
Her doctors never did find the primary site of Emmett’s cancer. “One in 20 people with melanoma don’t have a primary,” she says crisply, with the clinical distance of one who has had to repeat this many times. “Melanoma can be as small as a pin prick, or actually live under the skin. It’s quite scary.”
When doctors talk to her about her condition, she says, “Everything is ‘unfortunately. . .’, ‘unfortunately . . .’, ‘unfortunately’. . .” But Emmett is only 38, and she desperately wants to see her children grow up. So she has moved heaven and earth and family arrangements to get here, to learn how to fight her illness from Ian Gawler, “the fella in a dress” (his own words) who is living proof that it is possible to stop the C-word becoming a sentence.
It is 25 years today since Ian Gawler set up his first cancer support group, which took off after he announced its inception in a story that The Age ran on its front page. In the decades since then, 15,000 people have directly used his cancer services, and more than 75,000 have attended his programs in healthy lifestyles, disease prevention and meditation. He has written four best-selling books, including what patients here call the “cancer Bible”, You Can Conquer Cancer.
Gawler began as a voice in the medical wilderness, arguing that diet and meditation could arrest and even cure cancer at a time when conventional medicine dismissed such therapies as quackery that offered false hope. The years have seen conventional medicine start to adopt some of his strategies: “You go into most of the major hospitals these days and they’re running groups, they’re running meditation, they’re talking more constructively about diet and exercise, and they’re recognising the power of the mind,” he says. “I think GPs have moved a great deal in terms of adopting a more integrated approach towards medicine and a more holistic way of dealing with cancer specifically.
“But I think in oncology it’s been incredibly slow and very disappointing. People diagnosed with cancer are still being told by their cancer specialist that what they eat doesn’t matter, and (cancer specialists are) not addressing lifestyle issues. My view is that these things should be part of the first cancer consultation, like they are with heart disease and diabetes.”
Gawler is tall and lean, his elongation emphasised by the full-length tailored kaftans he has adopted since losing a leg. He has a lined face that looks melancholy in repose but which often breaks into flashing smiles over small ridiculous things that take his fancy. When they are not occupied with his crutches, his graceful hands move expressively as he talks. He is not always easy with small-talk one-to-one but when he is leading a session his words flow effortlessly. He intersperses advice and the findings of medical research with daggy jokes and powerful anecdotes about the healing of former patients that have the impact of parables.
Gawler is therapeutic director of the Yarra Valley Living Centre in Yarra Junction. Also working with his team is his wife, Ruth, a GP with an interest in natural therapies who has a post-graduate qualification that equips her as a counsellor.
Gawler could have found no more serene place to set up shop. His centre nestles in a cleft of land out of sight or sound of any road, with undulating paddocks and kangaroos in front and bushland full of the calls of magpies, kookaburras and bellbirds behind. The most beautiful room, the meditation sanctuary, is an airy hexagonal space with windows that look out into treetops. It has taken on an air of stillness, like a chapel, as if it has absorbed the peacefulness of the people who have calmed their minds in it. In this program, which ended on Thursday, participants at the first meditation of the day often closed their eyes to a misty morning and opened them 40 minutes later to sunlight streaming through the eucalypts. Nature offers its own metaphors for transformation.
Most people here have been told that conventional medicine cannot offer them a cure. The mood in the first couple of days is low; people are reserved, tired, anxious, aching. Belinda Irvin, 35, looks worn and is fretful about her pain; her breast cancer has spread to her bones and she limps along with the aid of crutches. Her mother, Nell Deeth, has a face set in lines of anger and sadness. In the past three years Deeth has buried her husband, and lost her mother and sister to cancer. She would be shaking her fist at the gods if only she had the energy, but that is all taken up with caring for her sick daughter and her daughter’s two active children.
Michael Allis, 68, is one of many here who talks about how frantically busy his life had been before he got sick. His wife called him Action Man because he never stopped. He says: “Cancer got my dad, and it got my brother as well. I thought cancer would never catch me because I was too fast for it.”
Gawler talks in one session about the Type C (cancer-prone) personality. Such people need the liking and approval of others to the point where they have trouble saying no, and trouble accepting the help of others. Their self-esteem is propped up by externals, such as a significant relationship or a successful career, and they can fall into profound hopelessness if they lose one of these things because their sense of self-worth will go with it. “This isn’t the sole cause of cancer, but often a significant event (of this kind) has occurred about 18 months before the cancer is diagnosed,” Gawler says.
Seeing is believing and seeing him is, perhaps, a central part of the Gawler experience for cancer patients. Before the first session, a couple of the patients on this program wondered anxiously between themselves about whether they would meet the legend himself. To the observer, their awe seemed uneasily akin to a desire to touch the hem of his kaftan, as if mere proximity to the master would have its own magic. But Gawler drily resists being enthroned in guru-dom, despite the fact that his life story – and his kaftans – would fit the template perfectly (see box).
In the first session, he says, “In each one of you, the outcome will depend on a whole lot of factors. It will be lovely to get cured of cancer so that you can look forward to dying of something else. If you were coming here hoping to learn the secret of keeping alive forever, there’s a real possibility we will disappoint you on that one.” Preparing for a mindful, peaceful death would also be part of what they would learn: “I think dying well is important too.”
They learn a lot about pragmatics: how to analyse the medical statistics related to prognoses, the importance of the enzymes in vegetable juices, the gentle exercise that can be done even by those with low energy and painful scarring.
Science is now starting to back some of Gawler’s philosophies. New research has found that for a woman with primary breast cancer, exercise for half an hour to an hour a day halves her risk of dying of the disease, and there have been similar findings for bowel and prostate cancer.
Recent findings also back Gawler’s insistence on the importance of vegetables in the diet. “For women diagnosed with primary breast cancer, having a high level of carotenoids in their blood – which is a direct measure of how much vegetable they are eating – reduces their risk of recurrence by 40 per cent,” he says.
Other lifestyle factors are beginning to emerge as significant too. “Lack of sunlight has been implicated in cancer, with up to 30 per cent of all breast cancers diagnosed in Europe now thought to be attributable to this. The link with sunlight is through its effect on vitamin D, which affects the immune system.”
The people here learn how to relax in meditation, and how to use imagery to fight their illness. Gawler believes that it is in deeply relaxed states that healing occurs. He also teaches practical exercises for managing negative emotions such as anger, guilt, shame and fear. Many of the people here find themselves doing painful emotional housekeeping, sometimes about hurts from very long ago.
To those sceptical about the mind-body connection, Gawler points to the placebo effect (under which about one-third of people given a sugar pill and told it is medicine will improve) and the pointing-the-bone effect (under which Aborigines who believe they have been ritually sentenced to death will waste away and die). He teases patients about being positive about eating healthy food, even the green juices that taste like lawn cuttings: “If you say, ‘Oh shit, not another salad!’ you lose the placebo effect.”
Something else happens here, something hard to put into words. Maybe it’s about the openness of people who are facing what really matters; maybe it’s the compassion that pain brings. But by the end of the course, the people who arrived here isolated in their silos of suffering have melded into a group that is peaceful and warm and trusting. The chat is friendly and intimate, the humour frequent, the general feeling one of loving-kindness. It envelopes you.
The previously wilting Belinda Irvin is incandescent, lit up with happiness. Now she is on only one crutch because her pain has been reduced by meditation exercises. She feels she has finally let go of painful feelings about a family member that had been gnawing away at her.
Her mother, Nell Deeth, looks calmer and happier too. She says she had an experience in meditation that startled her, because “I’m a very down-to-earth sort of person.” Deeth saw a river of light that seemed to radiate energy. She was frightened the first time it came; the second time, she realised what to do with it. “I deflected it across to Belinda.”
Belinda says that while she was meditating beside her mother, “I saw a white light coming towards me and a person in it looked at me and grabbed my hand, and energy went through my whole body. And he said, ‘everything’s going to be all right’ and that I was going to be OK. You don’t believe these things until it happens and then it’s ‘shit, it works!’ ”
Her mother nods. “We don’t want to go home. This is a healing place.”
Karen Kissane is a senior reporter.
The Ian Gawler story
IAN Gawler was 24, a decathlon athlete and a veterinarian when he was diagnosed with a savage bone cancer called osteogenic sarcoma in 1974. His right leg was amputated from the hip. Ten months later, he had a bony outcrop of cancer protruding from his chest. He had radiotherapy and chemotherapy but was told he had only a 5 per cent chance of being alive in five years time, and that he probably had only weeks to live.
He began meditating under the guidance of Melbourne psychiatrist Dr Ainslie Meares, who said that by the time Gawler came to him, he was coughing up blood flecked with sand-like particles of bone from his lungs (his cancer created excessive bone tissue). “That means he was very close to death,” Meares told the ABC.
Gawler meditated for up to five hours a day, travelled to faith healers in the Philippines, radically changed his diet and practised positive thinking exercises. In 1978, he was pronounced free of cancer and his remission was reported in the Medical Journal of Australia. There have always been conventional doctors who point to his conventional treatment as the probable reason for his cure, and Gawler believes that it contributed. But he is convinced that the alternative paths were crucial, and that this approach can work for others. Quoting Meares, he says, “A thing only has to be done once to show that it can be done.”

First published in The Age.

Health experts weigh in on … OBESITY



As we get fatter, the push is on to define obesity as a disease rather than a lifestyle choice.
THE patient was very fat, of the kind that doctors call “morbidly obese”; so heavy that her weight was likely to shorten her life. When she came to Dr George Blair-West for treatment, he did not weigh her or put her on a diet. He talked to her about her feelings.
He discovered that her mother had died when she was five, and her father had been a distant man. She felt food gave her the comfort and nurturing she did not have as a child: “Food came to have a very special meaning in her young life.”
Buried even deeper in her mind was another fantasy: that the sooner she died, the sooner she would see her mother again. For this woman, merely being told that obesity was damaging her health had no effect, because part of her did not want to live.
Blair-West, a psychiatrist and author of the book Weight Loss for Food Lovers: Understanding the Psychology and Sabotage of Weight Loss, says: “People have to stop thinking of obesity as a self-discipline problem. It’s a complex psycho-physiological problem more akin to an addiction.”
For Dr Joe Proietto, an endocrinologist and professor of medicine at Melbourne University, it is biology that has determined the fat person’s destiny. Psychological problems are a result of his or her obesity, not the cause of it.
“Severe obesity always has a physical cause,” he says firmly. “Moderate obesity is likely to be epigenetic (involving a change in which certain genes are switched on or off). And being mildly overweight is purely environmental.”
It’s a debate that has big implications for the mind, the body and the national health budget. Should obesity be regarded not just as a product of poor lifestyle, but as a disease in its own right?
This week the Federal Government announced a $3 million national nutrition survey in which thousands of Australian schoolchildren will be weighed and measured. Tasmanian Liberal Senator Terry Barnett has also suggested extending Medicare rebates to cover treatment of obesity as a chronic disease.
Traditionally, obesity has been regarded as an unhealthy condition and as a risk factor for other illnesses, but has not been seen as a disease in itself. The push to relabel it has gained great momentum in the world’s fattest country, America, where 65 per cent of adults are now overweight or obese.
In 2002, the US Internal Revenue Service ruled obesity a disease, allowing Americans for the first time to claim obesity-related health expenses such as surgery and weight-loss programs. In 2004, the US Medicare system also accepted that obesity is a disease.
In Australia, there is a push to follow suit. Here, adults got fat first (50-60 per cent are overweight or obese) but children are now following (25 per cent). In the last 10 years, the proportion of overweight children has doubled and the proportion of obese children (6 per cent) has tripled.
Most alarmingly, one in five preschool children – aged only three or four – is now overweight. Some experts have warned that the resulting diabetes, cancer and heart disease could bankrupt the health system.
Many people view an individual’s obesity as the result of a lack of willpower: too much time vegging out on the couch, and too many Bridget Jones moments with a box of Milk Tray.
Health Minister Tony Abbott has previously resisted calls for the Government to introduce bans on junk food advertising, arguing people are fat not because of advertising but because of poor diet and lack of exercise, and that the responsibility for children’s eating behaviour rests with parents.
But the more we find out about fat, the more simplistic that approach seems to be. Studies of identical twins suggest that up to 60 per cent of the predisposition towards obesity is inherited. Other studies have found that Darwin had it wrong; it does not take generations to produce genetic changes.
The way genes are “expressed” – rendered active or inactive – can be permanently affected by environmental factors within a single generation. This process is known as epigenetics. Proietto tells of a Dutch study which found that women starved in the first trimester of pregnancy (due to famine conditions during World War II) were more likely to produce children who would become obese. Another study found that women who ate too much during the first trimester also had fatter children; so did fathers who had started smoking in childhood.
Infection might even play a role: an experiment with chickens found that those infected with a common human virus, AD 36, became fatter even though they were fed exactly the same amount of grain as uninfected chickens who remained lean.
Children are more likely to be obese if they get less than six hours sleep a night, or if they were bottle-fed rather than breast-fed (one theory is that obesity among adults is partly due to the popularity of formula-feeding 50 years ago).
Proietto says rats that are starved in experiments and then given a normal diet become fat because their bodies’ long-term response to deprivation is to overeat.
“That diet early in life triggered something that not just made them obese at the time but then led their bodies to defend that obesity.” This would help explain why people who lose weight usually put it back on again.
It is now being speculated that genes affect not just metabolism but eating behaviour, such as cravings and sensations of fullness. Obese people have a resistance to the chemical leptin, Proietto says, which is created by fat cells, and sends signals to the brain about when to stop eating.
But the medicalisation of obesity has its opponents. Naomi Crafti, a lecturer in psychology at Swinburne University, says we are unnecessarily pathologising fatness.
“We are focusing on obesity rather than on health. Obesity is a risk factor for a number of illnesses, but it doesn’t mean that everyone who is obese will get those illnesses, and many people who are below the obesity level still do poorly because of poor diet with high sugar and fats. Obesity is just a descriptive term; it’s not an illness.”
Crafti says about 25 per cent of people with obesity do have a psychological problem known as binge-eating disorder, which is like bulimia without the purging. They gorge to cope with feelings such as sadness or anxiety. But many obese people have relatively normal diets and stay heavy because their metabolism has changed after years of fad dieting.
Dr Rick Kausman is the AMA’s spokesman on eating and runs the Weight Management and Eating Behaviour Clinic in Melbourne. He also condemns dieting. “I have spent 18 years listening to tens of thousands of people talk about their relationship with food,” he says.
” Almost every single person has said that 50 per cent, sometimes 80 per cent, of their eating is not related to hunger. They eat because they’re happy, sad, tired, bored, just in case they get hungry later, because their parents told them to finish their plate, because they are confusing hunger and thirst.”
Diets have told them to follow rules rather than attend to signals from their bodies, he says: “That paradigm doesn’t work and makes things worse.”
So, obesity is complex, it’s damaging and it causes great unhappiness. But does that make it a disease?
Dr Rob Moodie, the CEO of VicHealth, says: “If you rip apart the word – ‘dis-ease’ – then it probably is. Some do call it a disease. The World Health Organisation says obesity is a complex and incompletely understood condition.”
Obesity’s definitions are a bit shaky, he says: one researcher studied the All Blacks after rugby union’s World Cup and discovered that none of these powerfully built men had a body mass index in the normal range. There is also a question about whether obesity’s health problems are a result of weight or lack of exercise, fruit and vegetables.
There is no doubt that much obesity is lifestyle-related, the response of the human mind and body to what is, historically speaking, unaccustomed ease and plenty. This can be helped or hurt by the man-made environment. Urban design that makes it hard to walk, play or ride bicycles is known as “obesogenic”.
Blair-West points to one study of two towns in which differences in facilities and livability were associated with inhabitants of one place being an average of 30 per cent fatter than those of the other.
One Melbourne University study found that people living in disadvantaged areas weighed, on average, three kilos more than those in rich neighbourhoods. Even those with high incomes weighed more if they lived in disadvantaged areas, and the poor weighed less if they lived in affluent areas. Researchers said this pointed to the importance of neighbourhood characteristics, such as the number of parks and residents’ perceptions of safety.
While this suggests that public policy could help prevent obesity, it does not suggest it should be regarded as an illness. But proponents of the disease theory point to the way other lifestyle-related health problems, such as smoking and alcoholism, were much more effectively treated once approached as addictions rather than weak moral choices.
Boyd Swinburn, professor of population health and researcher into obesity prevention at Deakin University, says the major driver for relabelling obesity a disease is to make consultations claimable under insurance.
“In many ways, the ‘disease’ push is a political response. I think it’s a legitimate one if the end goal is to get improved care and management for people who have obesity.”
Melissa Wake, associate professor of pediatrics at the Royal Children’s Hospital and the Murdoch Children’s Research Institute, worked on the study that found that one in five preschoolers was overweight. She says the disease debate is not the central question.
“The distinction between disease and condition is an arbitrary one. It doesn’t get to the point, which is that we need to deal with this.”
– www.vichealth.vic.gov.au
– www.weightlossforfoodlovers.com
About one-quarter of obese people have binge-eating disorder, which is characterised by:
· Recurrent episodes, at least two days a week, of eating significantly more than normal in a two-hour period
· Eating rapidly
· Eating when not hungry
· Eating alone because embarrassed at how much one eats
· Self-disgust, depression or guilt after eating

Men not ready for paternity test grief

MANY men who believe that paternity testing is their “right” and the best way to find out “the truth” are unprepared for the intense grief they feel when they discover a child is not biologically theirs, according to research.
They were devastated and did not foresee that the test might lead to the ending of their relationship with the child. One father, who had the testing done secretly, said: “The results ruined my life when my ex-wife then ordered the child never to call me ‘Dad’ again. And worse still, she is never allowed to see me again . . . I still think of her as my daughter.”
For most men who had sought the testing themselves, however, a negative result meant they felt they now had no financial responsibility for the child and were no longer fathers in any sense at all. While they often felt deep loss about a final separation from the child, “they were all adamant about the value of paternity testing”.
The study, Paternity Testing and the Biological Determination of Fatherhood, is by Dr Lyn Turney of the Australian Centre for Emerging Technologies and Society at Swinburne University. It is published in the Journal of Family Studies.
Dr Turney interviewed 64 people about their experiences. Some had been tested, others planned to be.
Dr Turney reports that many who discovered that they were not fathers were so angry that they could not talk openly with their former partner or have a relationship with the child.
Dr Turney told The Age, “There are some men who can’t disconnect their anger about the mother’s deception and infidelity from their feelings for the child. The hurt is focused on the fact that ‘this child is the result of something my wife or partner has done to me’.”
Some who had been absolved of responsibility for an unplanned pregnancy by a mother who never told them about it were upset when they discovered it years later. One man said: “I was sad because I’d missed out on my son’s life. And angry because it felt like, you know, something had been kept from me.”

First published in The Age. Also see Sins Of The Mother.

Deaths in the family

A mother is accused of murdering her four children. But Karen Kissane discovers the case has the experts divided.
IT WAS supposed to be a routine operation, but little Joshua Matthey, only six weeks old, had a reaction that was not routine. A nurse noticed he was in trouble: he was grimacing and extremely pale, his back was arched, and his hands and feet were clenched. His body was so rigid that she could not turn his neck from side to side. And his breathing was “minimal”.
Joshua was resuscitated and put on ventilation for the next 60 hours. The neonatal physician in charge of his care, Dr Peter McDougall, this week told the Melbourne Magistrates Court that he thought Joshua’s behaviour suggested he had been in severe pain, and that his breathing difficulties had been the result of morphine that had been given to relieve that pain.
There was no basis, he said firmly, for another doctor’s later theory: that Joshua might have been poisoned with strychnine while he was in hospital. Strychnine poisoning would have produced more symptoms, and would have been impossible to administer at that time as Joshua had a naso-gastric tube and was not able to suck or take in anything orally.
McDougall is the director of neonatology at the Royal Children’s Hospital. The strychnine theory he was rejecting had been put forward by a senior surgeon at the same hospital. The surgeon, who is yet to give evidence, had supervised the operation to correct a digestive problem in Joshua in May 2002.
This division in medical opinion over Joshua is only one of many hotly argued scientific issues in a complex criminal case involving his young mother. Carol Louise Matthey, 26, of Geelong, sat in court this week facing charges that she killed not only Joshua but three more of her small children. She is on bail and has pleaded not guilty to all charges.
There was a history of medical mysteries in the Matthey family. Matthey had collapses for which no cause could be found, and two of her children had crises involving breathing difficulties and unconsciousness. Does the answer to the deaths of the Matthey children lie in the frontiers of knowledge about genetic science, as her defence lawyers insist, or in a mother’s mind?
Matthey lost four children in five years. Seven-month-old Jacob died in 1998 and was found by a coroner to have been a cot death. Chloe, aged nine weeks, died in November 2000 and was also found to be a cot death. Joshua survived his respiratory arrest at the Royal Children’s but died six weeks later after he stopped breathing while in a supermarket car park. He had an ear infection at the time, and a coroner later ruled that he had died of a rare infection, klebsiella septicaemia.
The last death was that of 31/2-year-old Shania. Her mother had previously told a doctor that Shania had episodes in which her breathing stopped until she turned blue. The night before she died, according to her mother, Shania fell off a coffee table in the lounge room while pretending to ride her Barbie’s horse. She died in the early hours of the next day, April 9, 2003. An autopsy found no cause of death.
Matthey is a solidly built woman with storybook rosy cheeks. In court this week she dressed plainly – workboots, pants, shirt and jumper – and wore her straight dark hair pulled back. Most days she was accompanied by a male relative, and they murmured occasionally to each other as the evidence moved back and forth in a committal hearing that was strongly contested.
This week’s evidence painted only a sketchy picture of Matthey. The court was told that her sister had told police that “even as a child, (Matthey) never really showed her emotions, so she wasn’t outwardly very emotional as an adult”.
Geelong GP Cindy-Lou Nelson, who accepted the Matthey family into her clinic after their first two children died, said that she could not remember Matthey showing emotion. She had recorded in her notes that Matthey was “quite reserved, and presented as a sad and lonely woman who was probably quite shy . . . Isolated, no supports, not interested in doing anything to help herself”.
Another doctor at the clinic recorded that Matthey had been tearful and had trouble sleeping. She was on anti-depressants and was being counselled in a program for bereaved parents.
When pregnant with Joshua, Matthey came to the clinic worried when she could not feel him moving. Nelson agreed with defence counsel Gerard Mullaly that Matthey was appropriately concerned for the safety of her pregnancy, and that she had always had a valid reason for attending the clinic.
Doctors were not always able to help her. In July 1998, Dr Jaycen Cruikshank told the court, Matthey had had several spells of fainting from which it was difficult to rouse her. The first doctor to see her in Geelong Hospital’s accident and emergency department had wondered whether a heart problem, or a “conversion disorder” – a psychiatric condition in which a patient develops physical symptoms that have no physical cause – might be among the potential diagnoses. Cruikshank concluded it was most likely that Matthey had had brain seizures.
In a statement to police, he said it was worth asking whether, given that the cause of her collapses was uncertain, there could be a genetic disorder in the family that linked her faintings and her children’s deaths.
Dr Andrew Davis, a pediatric cardiologist, told the court how such disorders can work. He said a genetic abnormality can cause conditions such as Brugada syndrome, which was discovered only in 1992. “If you have it, you are prone to abnormal dangerous heart rhythms that cause sudden death, especially in your sleep.”
The Matthey parents had tested negative, but only 25 per cent of people with the syndrome have a genetic abnormality, making it difficult to detect, he said. And there were doubtless other such disorders that had yet to be discovered, he agreed under cross-examination.
Asked Mullaly: “We now can explain some sudden deaths in infants that we couldn’t before? . . . We are learning more about sudden death, but there is much more we can’t explain?”
“Yes,” said Davis.
Dr Susan Beal, an Adelaide pediatrician and expert on sudden infant death syndrome, allowed for fewer uncertainties in her assessment of the Matthey children’s deaths.
She told senior defence counsel Ian Hill, QC, that a study by other researchers claiming that even three infant deaths in the same family might be from natural causes “was extremely flawed and was refuted in The Lancet by very good people”.
She said it would be “very, very unlikely” for three children in one family to die of SIDS. “I did see it once, and I missed it; I was young and innocent, and I didn’t believe mothers killed their children.”
BEAL said the main cause of SIDS was babies being put to sleep on their stomachs. If a child was found dead on his or her back, it was questionable that it was SIDS.
“The incidence is one in 10,000, in my experience, and I would always be suspicious that something else had gone on in that family.”
Beal reviewed the Matthey children’s files in a report to police. She concluded that Jacob and Chloe’s deaths could be either SIDS or “filicide” (killing by a parent); that Joshua’s death was most likely filicide; and that Shania died of “some totally unknown disorder” or filicide.
“In more than 30 years of experience, I know of three other families who have had four or more children die suddenly and unexpectedly,” she wrote.
“In all three families, some of the deaths were stated to be due to SIDS, and others have been attributed to infections. In all these families it was later proved that the children were all murdered . . . In the Matthey family . . . I believe all the evidence points to all children having been killed by non-accidental suffocation.” Hill challenged her vigorously on this. What evidence was there that any of the children had suffered physical injury, he demanded to know?
Beal said that in cases of suffocation, she would not necessarily expect to find signs of physical injury. “The autopsy is absolutely unable to distinguish between induced suffocation and SIDS,” she said.
Her conclusion that the deaths were suspicious was based on several “pointers”, including that:
· Jacob was outside the normal age for SIDS;
· Chloe had been found on her back, and Beal believes babies on their backs, whose faces are not covered by bedclothes, do not die of SIDS;
· The family had a history of children experiencing “ALTEs” – apparent life-threatening incidents where they stopped breathing or were found unconscious. “ALTES are not a predictor for SIDS; they’re a predictor for filicide,” Beal said.
Hill asked: “You take an event and put the worst possible spin on it?”
Beal: “I put the most likely spin on it.”
Hill then referred to British cases in which the evidence of a prominent pediatrician, Sir Roy Meadows, was later found to have helped wrongfully convict of murder mothers who had lost two or more children to cot death.
Hill asked Beal: “At the end, you are left with an approach similar to that of Sir Roy Meadows, looking at the statistical improbability of events happening in one particular family, because you have no medical evidence?”
Beal said tartly: “What do you mean? I have just outlined it to you!”
Most of the hearing this week was taken up with doctors and ambulance officers who had dealt with the Matthey family.
The court heard a recording of a call Matthey made asking for an ambulance. She reported that Shania had fallen off a coffee table, begun to scream, suddenly held her breath and passed out. The child was purple and not breathing, she told the operator.
In the call, Matthey sounded tearful and distressed. At one point she told the operator that she knew CPR. She dropped the phone, and a few moments later, a small child coughed and wailed.
When ambulance officers arrived, they found Shania upset and clinging to her mother but showing no signs of ill health.
Shania, who had a history of asthma, died early the next morning. Her mother said she found her not breathing in bed.
As she listened to the emergency-call recording in court, Matthey cried, quietly.
The hearing continues with prosecutor Susan Pullen, SC, before magistrate Duncan Reynolds.

First published in The Age.

Who’s the dad? Why he may not know

HE tangled web that some women weave begins when they discover they are pregnant. Perhaps they had an extramarital fling; or one relationship ended the same month that another started; or they were raped or coerced into the kind of sex that few would call consensual.
The result: one pregnancy, two potential fathers, and the beginnings of a dark and painful secret.
Why Women Don’t Tell is the title of the latest paper in a study that talks to men and women who have dealt with doubts about who is the father of a child. Most of the women who were uncertain of their child’s paternity did not intend to commit “paternity fraud”, researcher Dr Lyn Turney, of Swinburne University of Technology, said.
They just found themselves in a position where they could not be sure and kept their uncertainty to themselves.
The longer it went on, the harder it became to confess, mostly because they did not want to damage the relationship between their child and their partner.
“You just have to see them together to see how much they love each other,” one woman said. “And love’s an intangible thing and it’s something that grows with you . . . It takes a long time . . . And since the day (she) was born, that’s it, he’s Dad.”
The interviews with more than 50 people found that even when the social father suspects – because the child does not look like him, or friends have dropped hints, or there were unexplained tears or whisperings at the time of the child’s birth – he rarely takes any action while the relationship is happy.
It is when the relationship breaks down, and he finds himself financially supporting a child with whom he no longer lives, that he pursues paternity testing.
“For both men and women, the common (trigger for testing) is child-support payments,” Dr Turney said.
The issue of “paternity fraud” hit the headlines earlier this year with the case of Liam Magill.
Because of bureaucratic errors, Mr Magill had to pay child support well above the legal percentage over eight years for three children. DNA tests proved that two of the children conceived during his four-year marriage were not his own.
Mr Magill, 54, was awarded $70,000 by the Victorian County Court in November 2002 after he sued his former wife for damages and economic loss for deceiving him.
But his ex-wife, Meredith (Pat) Magill, 37, successfully appealed against the decision. Her defence argued that in putting his name on birth notification forms, Mrs Magill had not intended to assert that he was the biological father.
The Victorian Court of Appeal ruled Mr Magill had not relied on statements in the forms in any respect other than the children’s names. Mr Magill is now appealing to the High Court.
The case launched a blaze of publicity, with claims the incidence of “cuckoo chicks in the nest” is between 10 per cent and 30 per cent of all children.
Dr Turney and her colleague, Professor Michael Gilding, say there are no reputable studies that back those figures, and that the most reliable estimates suggest the true incidence is between 1 per cent and 3 per cent of children.
Dr Turney said the women in her study, reported on in the Journal of Family Studies, did not fit the “moral panic” stereotype of unfaithful, manipulative partners. Many were young, naive and sexually inexperienced.
“The pregnancies usually resulted (from) one-off encounters that occurred at the margins of monogamous relationships,” Dr Turney says.
“They did not involve infidelity or deception, as the women were either free of a relationship or minimally attached to dying, old, or embryonic new relationships.”
But the women feared their new relationships would not withstand revelations about a prior sexual encounter.
One woman had unplanned sex with a long-time friend, the first since the death of her husband a year earlier; several days later she met a new man who then became her partner. “I found that I was pregnant so I just assumed it was the second chap because I’d continued sleeping with him,” she said.
Some reported being “in denial” and choosing the course of least resistance: not telling, and not deciding whether to terminate the pregnancy. All the women blamed themselves.
One woman who did tell her partner about a single sexual episode during a brief separation was knocked to the floor and kicked until a rib broke.
Some women reported conceiving while trapped in abusive relationships in which they were forced by their husbands to have sex with other men.
“I got, ‘If you love me, you will do this for me’,” one said. The paternity of resulting children was accepted by such husbands only until the relationship ended.
Either side can use paternity – or lack of it – as a dirty tool in Family Court battles. In an earlier paper, Dr Turney reported that men told of some mothers pursuing testing so that their ex-husbands could be made legally a “non-father”, often losing custody and access. “There is a child out there who loves me and was ripped away from me,” said one man. “I miss him every day.”
Some men who had testing done secretly were shocked that their ex-partners then refused them access to a child they no longer wanted to pay for.
Women in the study reported having to force testing upon errant partners who denied paternity for tactical reasons, trying to delay the onset of child support payments. They felt humiliated at the suggestion that they had had other sexual partners.
Some professional women did not want money but for the father to have an emotional relationship with the child.
According to one, “I thought that, when he had incontrovertible evidence there, that it might enable him to make a bond with the child”.
Dr Turney said the cases in her study suggested that the realities of paternity uncertainty were complicated. There needed to be an acceptance that such cases were “mistakes due to the human condition”. “It’s a really complex situation for both men and women,” she said.
For further information about the study or if you have a paternity story, phone 1800 007 166 or email lturney@swin.edu.au.
Up to 5000 paternity tests are conducted in Australia a year – about 0.25 tests for every 1000 people. In the US, there are 340,800 tests annually – 1.2 tests per 1000 people.
Between half and two-thirds of tests are initiated by men or parties acting on their behalf (eg: a man’s parents or his new wife).
On average, 25 per cent of tests are conducted with the consent of one parent only. These tests were overwhelmingly “motherless tests” – the mother was the parent who had not consented.
With “motherless tests”, only 10 per cent confirmed the man was not the father.

First published in The Age.

RU Serious?

As politicians argue about whether the abortion pill should be available, women in country Victoria can’t get legal surgical abortions now. Karen Kissane investigates the cloak of disapproval in the bush.
OUTSIDE the big city it’s another country, and they do things differently there. “Anne” knew this. She expected that small-town life would be a big change when she moved to Castlemaine. But she did not realise quite how much of what she took for granted in Melbourne would be left behind.
Two years ago, she had an accidental pregnancy. Her contraception had failed. She was in her early twenties and felt that neither she nor her relationship were prepared for parenthood. She turned to the nearest big town, Bendigo, to seek an abortion. She called the rooms of a private gynaecologist and was told that termination would not be possible anywhere in Bendigo and that she would have to go to Melbourne. “I was pretty taken aback,” says Anne.
She was even more taken aback when, having organised transport and somewhere to stay, she arrived at a Melbourne abortion clinic on the appointed day to find that she had to negotiate her way past half a dozen protesters waving placards and posters. A man and a woman challenged her with, “Do you realise this is the size of the baby you are killing? How can you do this to your baby?” Says Anne, “It was like being accosted by paparazzi. You have to step aside; you have to walk around them. It’s really awful. And I am certain that this abortion clinic is where a lot of country women end up having to go. You don’t have many options if you don’t know people in the medical industry in Melbourne.”
What happened to Anne is not unusual: if a woman who lives outside Melbourne has an unwanted pregnancy, she must nearly always travel to the capital if she wants to end it. Thirty-six years after a Supreme Court decision opened the way for legal abortions in Victoria, it remains near impossible to get one in country areas except in one or two centres such as Mildura.
The lack of availability of surgical abortions may well have remained hidden had not doctors renewed their calls to legalise the abortion pill mifepristone (also known as RU486), which is banned in Australia. That led Victorian Liberal MP Sharman Stone, the member for Murray, to suggest that RU486 might help rural women. She has threatened to cross the floor on the issue if there is no conscience vote allowed when the Democrats try to change the law later this month. “I feel very concerned about the number of women and girls who have to go to capital cities now,” she said. “It’s a very traumatic, expensive, complex process for them. If you’re only 13 or 14 with no family or community support, you can imagine how traumatic that is.”
But Federal Health Minister Tony Abbott, who has opposed RU486, says there are potential health problems with the drug that mean it will never be “the answer to a country woman’s prayer”.
While opposing sides bat claims about the pill’s safety back and forth, there are broader questions. Given the reluctance of country hospitals and doctors to provide surgical abortions, (in some cases, individual rural doctors and pharmacists have even refused to provide the normal contraceptive pill), what chance is there that they would make mifepristone available even if it were legal?
There are still no abortions in Bendigo, despite the fact that it is a town of just under 100,000 people serving a wider catchment area of 300,000. “The Catholic church looms large on the hill overlooking the city,” says one health worker who has lived there. “It has one of the largest Catholic cathedrals in Australia.” She is one of several people interviewed for this report who claimed that local strongholds of Catholic opposition to abortion have influenced the health policies of state organisations in several rural areas.
Dr Christine Tippett, senior vice-president of the Royal Australian College of Obstetricians and Gynaecologists, was disbelieving when she first got a message from The Age asking her views on the lack of abortion in the countryside. “I thought, ‘This can’t be right!’ ” But after phoning rural colleagues, she confirmed that there was little access to the service.
She says many country gynaecologists refuse to do the procedure on moral grounds – “A lot of them are practising Catholics” – and that the strong Catholic heritage of cities such as Bendigo and Warrnambool means there is opposition to abortion “within the organisations. I think that does influence it quite significantly”. It is one thing for an individual doctor to decline abortions for personal moral belief; many would accept that as legitimate. Tippett says it is a stance the college respects, and any of its trainees who conscientiously object to abortion are not expected to participate. But some sources have told The Age that Bendigo has specialists who are willing to perform elective abortions but cannot get access to theatres at the publicly funded Bendigo Base Hospital. “If you try and get a theatre (for abortion) you won’t get it except on medical grounds,” says a local health source.
A spokeswoman for Bendigo Hospital confirmed that it does no abortions and said this was simply because “it is not our policy and we have never done them”.
Tippett says, “I think gynaecologists in Bendigo are aware that in fact they are not encouraged to do terminations. It’s something made clear to them.” How? “These things are often very subtle, aren’t they?”
She says the college represents many diverse views and cannot have a stance on the rights and wrongs of abortion itself, although “clearly we believe that women should have access to termination of pregnancy”. Nor can it comment on state hospitals that do not permit the procedure: “We can’t dictate to hospitals what they do. They are autonomous bodies funded by a state department.”
There is a strange kind of silence about the lack of rural abortion. Several women’s organisations and health services are reluctant to speak on the record for fear they could further entrench opposition to it. One woman who worked in Gippsland health services for many years believes that previous waves of anti-abortion demonstrations might have contributed to the current lack of services: “About 10 years ago there were big protests outside hospitals that were doing this kind of work. I think that sort of thing has a greater impact on practitioners in country towns than it would, perhaps, on people in an abortion clinic in Melbourne. I would suggest that that has been part of why they are not done any more.”
Country life is different. It is not just patients who are subject to the conforming pressures of their neighbours’ social monitoring. A health specialist based in Melbourne says the conservatism of rural towns can defeat even the best-intentioned doctor. She tells of a doctor who opened up a bulk-billing practice in a town in the Goulburn Valley. “He started it for the good of the community but he was ostracised by his peers. His capacity to stay and raise his family and live his life there was destroyed. The same sort of shunning can happen over abortion procedures.”
Some doctors argue that the need to go to Melbourne is a blessing in disguise for rural women, who fear that their confidentiality is not safe in areas where everyone knows everyone. Bendigo GP Dr Ray Moore says that, in 27 years of referring women to Melbourne, he has only known one patient to protest over not being able to have an abortion locally. “It’s still a small-town environment and, whilst confidentiality is something that we all uphold, people in small towns know how that environment works, and most people would prefer not to have their termination here.”
Moore believes that for RU486 to become readily available, even if it were legalised, “there would have to be quite a sea change in rural environments”. Doctors would have to be willing to prescribe it, chemists would have to be willing to dispense it, and women would have to be willing for local health workers to know their situation. Others argue that the lack of rural abortion services, both surgical and medical, is a serious problem. “It’s dreadful. If you don’t have much money, it’s often unachievable,” says Deb Parkinson, research worker with North-East Women’s Health. “Often you have to go down to Melbourne the day before so that you can have counselling, so you have accommodation costs. Many women want to take a friend or family member with them. There are transport costs and often about $200 of medical costs that’s not covered by Medicare.”
There is limited access to public hospital beds for abortion even in the city. The associate director of women’s services at the Royal Women’s Hospital, Dr Chris Bayly, says the hospital gets many more requests for abortion as a public patient than it can meet. The hospital does about a sixth of the state’s procedures. Monash Medical Centre is the other large city provider.
According to figures released by the State Health Department under a recent freedom of information request by The Age, Victoria had 19,590 abortions in 2004. Of those, 14,805 were done privately and 4785 were public patients. At one private provider, the Fertility Control Clinic in East Melbourne, between a third and half the procedures are for women from the country, according to the clinic’s psychologist, Dr Susie Allanson.
Angela Taft is the national co-convener of the women’s health special interest group of the Public Health Association of Australia. “Given that we know that the majority of people are in favour of access to termination, (any refusal by country hospitals that have willing doctors) is gatekeeping. It’s disadvantaging rural women based on religious discrimination. We would be keen to have the Health Minister examine any such blocks,” she says.
A spokesman for State Health Minister Bronwyn Pike says she believes that hospital services should be determined on the basis of medical issues and not ideology. He says the minister had been unaware of any problem in Bendigo and would raise the matter with the hospital. She would also ask the Maternity Services Advisory Council to look at the issue of provision of abortion services in the region. Pike supports RU486 being made available “and is concerned that Tony Abbott is blocking it for ideological reasons”.
The drug was banned in the first place in a political trade-off. The Federal Government wanted the support of Tasmanian MP Brian Harradine in 1996 for the partial sale of Telstra. Harradine, a conservative Catholic, extracted a promise to ban RU486 as part of the deal. Unlike all other drugs, which are approved or rejected after medical assessment by the Therapeutic Goods Administration, RU486 can be imported only with the permission of the Federal Health Minister, Tony Abbott. With his own MPs this week threatening to cross the floor on the issue, Prime Minister John Howard said yesterday he is considering allowing a conscience vote on overturning the Harradine amendment.
Tippett is doubtful legalising the drug would make a significant difference because any doctor prescribing it must have surgical back-up. “I don’t believe the availability of mifepristone is necessarily going to make abortion more available . . . You would need practitioners who themselves are prepared to do abortions and a community that supports them.”
She says that otherwise women who had taken the drug could find themselves in an emergency wards in which staff opposed terminations.
But Dr Bayly believes mifepristone might expand the availability of abortion in the country. Emergency hemorrhages would be rare, she says; most women who needed to have the procedure finished surgically would have plenty of time to get to a large centre.
“There are compelling reasons to legalise it: it is a safe, proven method that many women prefer.”
ABORTION and “child destruction” remain in the Victorian Crimes Act 1958, which makes it illegal to “unlawfully administer any poison or unlawfully use any instrument with the intent to procure miscarriage”.
In the case of child destruction, one cannot “unlawfully cause (a) child (capable of being born alive) to die by any wilful act”.
The meaning of “unlawfully” was determined in 1969 by a Victorian Supreme Court judge.
The “Menhennitt rules”, as they are known, say that an abortion is not unlawful if a doctor honestly believes on reasonable grounds that the abortion is necessary to preserve the woman from a serious danger to her life or her physical or mental health.
Doctors have used this interpretation to give women abortions for social and economic reasons on the basis that they might suffer depression or other emotional problems if forced to continue with an unwanted pregnancy.
RU486, or mifepristone, induces miscarriage by blocking the hormone progesterone, which is needed to sustain pregnancy.
It is administered in a clinic. The patient later takes a prostaglandin called misoprostol, which causes contractions in the uterus and helps tissue to pass. The process is like a spontaneous miscarriage and is usually complete within a few hours. There is pain and bleeding for a few days and the patient must return for check ups.
In about one case in 20, the abortion will be incomplete and the woman might need a surgical procedure finish the termination.
NORTH-EAST HEALTH (WANGARATTA HOSPITAL) Serves 70,000 people. Rarely does abortions; only two in the last seven years, both involving severe foetal abnormalities. “Neither of the obstetricians here are keen to do them,” says director of nursing Chris Giles. Women go to Albury or make a three-hour trip to Melbourne.
Serves 228,000 people. “We don’t have any doctors who do elective abortions,” says spokeswoman Jenny Ginnane. “It’s up to the visiting medical officers whether they choose to do an operation and currently we don’t have anyone who chooses to do them.” Abortions “in extreme circumstances” do occur but very rarely.
Serves 57,500 people. Elective abortions are performed at the hospital, says spokeswoman Emma Pepyat. The only limitations are those imposed at doctors’ discretion or by legislation. Mildura Hospital is publicly funded but managed privately by Ramsey Health.
Serves 300,000 people. “We don’t do them at all,” says spokeswoman Bronwyn Wheatley. “It’s not our policy to do them. The reason we don’t do them is because we have never done them.”
Serves 200,000 people. Did not return calls.

First published in The Age.

Birth mother

Sheila Kitzinger has spent decades pushing natural birth. But the scalpels are still out, writes Karen Kissane.

A woman at Sydney Airport heard that Sheila Kitzinger, the high priestess of the natural childbirth movement, was expected to arrive at any moment. “I know her books,” the woman said. “Tell her she’s a liar. She says you can push them out so easy; it’s not like that at all.”

What does Kitzinger say to women who are wheeled out of the labour ward wanting to burn her book – or her?
“They’ve got to be angry with somebody and I suppose I’m as good a person as anyone because I can take it,” she says, with unruffled British calm.

“I do a lot of work with women who’ve had distressing experiences in childbirth and they feel they’ve been cheated, and that it was so awful that it must be the women who write books about childbirth who cheated them. But of course it isn’t, because we know that birth can be beautiful and exultant.”

Kitzinger is credited with having done more than any other activist to change the way hospitals treat women in labour. She has written more than 20 books on birth and female sexuality including Pregnancy and Childbirth, which has become the pregnant woman’s bible since its publication in 1980.

She is in Australia for a conference of the National Association of Childbirth Educators in Sydney this weekend and to speak at the Australian Breastfeeding Association in Melbourne next week.

Her message has never changed. It is simple but, for the medical profession, confronting. She says women should resist medical intervention during birth unless it is truly necessary. She accuses technology-focused hospital systems of disrupting women’s emotional and physical flow in childbirth, which she sees as a psychosexual process akin to lovemaking in its natural rhythms and its need to unfold spontaneously.

She warns that one medical intervention leads to another; a mother who is induced, for example, is more likely to need pain relief and therefore more likely to be unable to push out the baby without forceps or a caesarean. She says that mothers angry about the natural childbirth ethos “tend to say, `Thank God I was in hospital, and thank God I had my labour induced and thank God I had my uterus stimulated and had an epidural because look at all the other things that went wrong.’ And, of course, they went wrong because one thing led to another”.

Kitzinger, 74, is often described as grandmotherly. She wears her hair up in a soft bun, has a face that creases into myriad kind wrinkles when she smiles and is warm and charming to interview.

But there is matriarchal steel beneath the soft demeanour. She never raises her voice but she rarely concedes a point. Doesn’t the fistula hospital in Addis Ababa, which repairs the torn insides of African women left incontinent by obstructed labours, suggest that non-intervention in childbirth is catastrophic for some women?

“It’s not just a question of looking at non-intervention,” she says briskly. “It’s a question of looking at the conduct of the whole second stage of labour. Throughout that part of the world there is tremendous emphasis on `Push push push, come on try harder, you can do better than that, mother!’ ”
But she agrees that women in the Third World have too few caesareans and those in the First World have too many.

Kitzinger has undoubtedly been a major influence on mothers and midwives for several decades. Most big Australian hospitals now offer “birth centres” in which midwives try to support natural childbirth.

Partners or friends are allowed to stay with a labouring woman, and it is not uncommon for women to arrive at hospital with “birth plans” detailing their preferences for treatment during labour.

But there is also evidence of ways in which the movement is failing to get its message across. Caesarean rates in much of the Western world have risen steadily and, in Australia, one in four babies born this year will arrive via caesarean section.

In 1991 Australian caesarean rates were 15.7 per cent for public patients and 21.8 per cent for private. The latest figures, for 1999, showed that 19 per cent of public patients, and 30 per cent of private patients, had caesareans. In some private hospitals – the kind nurses nickname “caesars palaces” – the rate is well over 50 per cent.

“I don’t know how they can justify that,” Kitzinger says tartly. “(It’s about) fee for service, more money for obstetricians and anaesthetists.” She says the World Health Organisation suggests a justifiable rate is 12 per cent.

But what of doctors’ claims that educated private patients pressure them for caesareans: for convenience, or supposed safety, to keep their vaginas “honeymoon tight” or, as some critics put it, “because they’re too posh to push”? What if the increasing rates are partly about a distortion of Kitzinger’s long-held goal: women exercising their freedom to choose the birth they want?

The debate has been too value-free, she says. “We have been talking about choice in childbirth as if we are talking about breakfast cereals on a supermarket shelf; as if each choice was equally valid and free.

“I think this is cheating women and misleading women, and I think an analysis of choice needs to be made.

“The medical system . . . is advertising caesarean sections as the safest option for the baby, and any woman that isn’t being selfish is supposed to choose it because it’s healthier for the baby. And there’s absolutely no evidence that this is the case.”
In fact, she says, babies born by caesarean are more likely to have breathing difficulties, possibly because they have not been stimulated enough by the hard contractions of the birth canal.

She is dismissive of claims that doctors operate because they fear litigation: “Of course it’s an element but what are they saying? `These women are getting uppity? These women are suing us? If they didn’t do that, everything would be all right?’ It’s somehow blaming women.”

Kitzinger’s next book, due out in May, is an expanded edition of Pregnancy and Childbirth, with more information about studies of the consequences of interventions. “There are all sorts of research findings to consider that are evidence-based, and I would ask women to look at them,” she says

Is she dismayed by the fact that so many smart, sassy women don’t? Take American feminist Naomi Wolf. She was shocked by her experience of a bad birth in an American hospital. Nothing happened the way Wolf thought it would. She was put on a drip to speed up her labour; staff watched the foetal monitor rather than her; they terrified her with threats of surgery and her labour stopped.

She finished up lying naked and cold on an operating table, watching the reflection of her emergency caesarean in glass doors opposite as people worked up to their elbows in her body, “a cauldron of blood”.

Wolf later told an interviewer, “I feel absolutely staggered by what I discovered after giving birth. Birth today is like agribusiness. It’s like a chicken plant; they go in, they go out.”

If anyone should have read up beforehand on the politics of childbirth, it was Wolf. What does this say about the childbirth movement’s failure to get its message across? And how does Kitzinger feel about younger feminists discovering, as if for the first time, the need for a crusade when Kitzinger has been waging it for decades?
Kitzinger says Wolf asked for support with her book on motherhood. “I found it awkward at first because I didn’t want to attack Naomi,” she says of a meeting they had over the issue. “It was a real experience for her, and a very painful one. And I wanted to take her in my arms and say, `Good for you. You’ve done something with this awful experience. But I don’t agree with what you’re saying.’
“I think her whole interpretation of it was just looking at the facade. She thought women were being misled about how awful birth was.” Kitzinger believes Wolf had post-traumatic stress disorder. Kitzinger is speaking on distress after childbirth at the Sydney conference tomorrow. She now spends much of her working life with such women, through a birth crisis helpline she has set up in Britain. “I don’t tell them anything; I listen to them. They often say they felt raped, or they look at what was done to them and say they were treated like meat on a table.”

She says that medicating such women with anti-depressants only makes them worse. “With depression, you wake in the morning feeling grim, unable to face the day. When you’re suffering post-traumatic stress, you’re in a state of permanent alarm; you have panic attacks, you might not be able to walk past the hospital, you can’t bear to see anything about birth on television. And flashbacks are a central part of it. That’s different from depression.”

Kitzinger is a social anthropologist who began studying birth in different cultures because the male academics at Oxford ignored women’s lives – “and Margaret Mead (the pioneering US anthropologist) encouraged me”.

She has five daughters and wrote part of her first childbirth book on a notepad that rested on the back of her baby, Polly, as she lay on her lap being burped.

Three of her five daughters are lesbians, which Kitzinger says suggests she has done something right as a mother, “that three women in the family could make such a powerful decision in their lives”. Previously she has suggested that the girls grew up comfortable in a women’s world because they were thrown back on each other as she and her husband Uwe, now a research fellow at Harvard, were so busy with their work. She and her husband are about to take a holiday in Bali to celebrate their 50th wedding anniversary.

The marriage has been successful partly because they have usually lived on different continents, she says, smiling. “And when he is at home he’s a very keen sailor, so he’s out in his boat, and I don’t like housekeeping on a boat. And anyway I don’t like having a skipper in charge of my life. So I tend not to go on the boat.”

Looking back on her life’s work, she believes she can point to progress, but it is uneven, she says. “Midwives in Britain are so much more aware; I can’t handle the number of hospitals who want to send midwives to my workshops. And we still have home births in Britain. In the Bath area, it’s 16 per cent home birth and in part of Devon we’ve got 22 per cent home births.”

And it sounds as if British activists have been more successful than Australian ones in harnessing political will for the cause.

“Another thing we have is an inter-party parliamentary committee (that advises the government on childbirth issues). We are giving an award to the unit in Britain which has increased its home birth rate most in the last two years. And we’re asking units to see how well they can do in promoting normal birth (in hospital).”

Her eyes light up with wicked delight that the system will be subverted to the goals of its critics. “The award will be presented by the Minister of Health. It’s official.” And she laughs.

Sheila Kitzinger will speak informally on birth and breastfeeding at Gasworks Park in Port Melbourne on Wednesday at 11am. Bookings 9555 5135.

Karen Kissane is an Age senior writer.

Delivering the facts

“Normal” birth is far from the norm.

Only a minority of first-time mothers have no intervention, according to a study of 171,000 low-risk women by the University of Technology Sydney.

Sally Tracy, researcher at the Centre for Family Health and Midwifery at UTS, said: “Less than one quarter of public, first-time mothers and one-fifth of private patients give birth without intervention.” The study found that labour was induced or sped up for one in three public patients and half of private patients, while between a quarter (public) and a half (private) of women used spinal anaesthesia. One in three public patients and half of all private patients received an episiotomy (a cut to the vagina).

Dr James King, obstetric epidemiologist with the Royal Women’s Hospital, says Australia’s caesarean rate would now be about 25 per cent, and women have more depression and more problems adjusting to motherhood after caesareans. But he says there are fewer damaged babies than 30 years ago, because doctors no longer allow long and arduous labours.

First published in The Age.