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| End of the line |
5-Sep-2008 |
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For some infertile couples, IVF can become a long and agonising process. Who decides when it is time to step off the conveyor belt and give up hope? By Bianca Nogrady
GIVING up on IVF is a little like turning off life support, says Dr Christine Read. The comparison may seem callous, but Dr Read, medical director at Family Planning NSW, has seen enough desperate women to know the anguish of this scenario.
"People invest so much in getting pregnant, [that] when they're told they aren't pregnant or [the pregnancy] lasts for a short time, then fails, it's devastating," she says.
It is three decades this year since the world's first IVF baby was born, in England. Two years after that, Australia's first IVF baby arrived, and the country's assisted reproductive technology industry has not looked back. In 2005 alone, there were more than 8000 IVF success stories in Australia. However, amid the tens of thousands of happy couples, there are some for whom IVF does not deliver.
Dr Read describes the experience of one couple, which is no less painful for being increasingly typical. A woman from overseas, older than 35, had married an Australian man who already had children from a previous relationship.
"She was desperate to have a child and had been trying ever since she'd been married, for about one year," Dr Read recalls. "He was quite supportive, but I don't think for him there was the imperative there was for her."
Given her age, the woman's chances of a successful IVF outcome were declining, yet she persisted until the realisation had to be faced that she was not going to be able to conceive her own biological child.
"The grief associated with that, and the effect for her in her cultural space of feeling that it was really important to have a child, and not being able to have children -- it was a very difficult dilemma," Dr Read says.
Situations such as this are becoming all too common as more and more couples defer child-bearing until their 30s and even 40s. In 1993, just 6% of women with IVF pregnancies were aged over 40 years. In 2005, that percentage had more than doubled to 15.3%.But by the time many women are ready to start a family, they are already facing an uphill battle. Unfortunately, Dr Read says, there is an unrealistic expectation among many women that what time has undone, IVF can repair. Many fathers are also unaware that their fertility also declines with age, although not as dramatically as in women.
"I do think [there is] a tendency for women who haven't got pregnant and who are older to think that this is going to solve their problems," she says.
High-profile pregnancies to celebrities in their 40s or late 30s, such as Nicole Kidman and Jennifer Lopez, perpetuate the myth that age is no barrier to fertility, as long as you have the willpower, the technology and the money.
This leads many couples to continue with IVF cycles well beyond the point of reason -- in one case described by another clinician, a woman underwent 24 cycles and two miscarriages before admitting defeat. The question for many couples, and for the clinicians who treat them, is how to decide when enough is enough.
IVF is clearly no picnic. "I describe it as torture," says Professor Michael Chapman, senior fertility specialist with IVF Australia.
To start with, the process takes a toll on the female body. Women must undergo chemical stimulation of their ovaries, regular blood tests and ultrasounds to determine progress, harvesting of eggs and implantation -- all of which can be physically traumatic.
But by far the greatest price paid by couples undergoing IVF is the emotional rollercoaster that accompanies each cycle.
"As you go through a cycle of IVF you get positive signs that you're growing eggs, you get good fertilisation rates, and nice embryos, but even then 70% are going to fail," says Professor Chapman. "It builds them up to the top of a cliff, then their period comes and they are forced to jump off the top of the cliff."
On average, couples undergoing IVF will ride this rollercoaster two to three times before a successful pregnancy, but success rates can vary.
"Provided you're under 38 and continue to produce reasonable embryos then the chances per cycle don't decline particularly," says Professor Chapman. "If the first chance is 30% then the second chance in our unit would be around 28% but it would never go below 25%, provided you're continuing to make reasonable embryos."
However, if a couple still hasn't succeeded after a year of IVF, the odds weigh against them. "We regularly see a handful of patients who are between six and 10 cycles," he says. "Five to 10 per cent of patients who fall into that category do succeed."
Beyond the age of 45, the chance of success in any one cycle plummets to less than 2%. Failure rates in this age group are so high that recent Australian estimates put the average cost of one live birth in women of this age, using autologous assisted reproduction, at $1.3 million.
Given all this, how do patients, and doctors, decide when to stop? It's a fraught decision, says fertility specialist Dr Kate Stern, director of research at Melbourne IVF.
Occasionally, thankfully, all parties reach the point of acknowledging failure at the same time, she says. "They will come to a point themselves, which is not too far off what you thought. You'll know and they do."
Some couples start IVF with an end point already in mind, and will walk away when they reach that point. For others, the costs of IVF become too much to bear. "For couples that find it amazingly hard work every single time, the risk-benefit analysis says it might not be worth continuing," she says.
But not all couples set themselves a limit, or even agree when their doctor suggests it might be time to stop. "Sometimes we have these people that don't want to stop," says Dr Stern. "They do want to keep going when they've got a miniscule chance and they're the hardest ones to manage."
On five or six occasions in her career as a fertility specialist, Dr Stern says she has been the one to make the tough call.
"I have sometimes said I don't think there is any chance with your own eggs and I think we have to get past that point now."
Sometimes patients accept this, but sometimes they don't. On occasion, Dr Stern has had to draw the line and tell the patient they must therefore find another doctor. It's not a statement she makes lightly. "I always think I've failed," she says. "Who have I stopped that could have got pregnant?"
The open-ended nature of IVF treatment has come under scrutiny in recent years, particularly after former federal health minister Mr Tony Abbott tried to reduce the Medicare rebate for IVF cycles beyond a certain age or past a certain number of cycles. The IVF industry vigorously opposed the proposal, which was eventually shelved after vocal opposition from outside and inside the government. However, it did raise the question of regulation in an industry that enjoys the rare privilege of relatively unrestricted government subsidy.
Professor Stephen Leeder, director of the Australian Health Policy Institute, says IVF is "protected territory" because it is so politically and ethically sensitive. "Mr Abbott's experience is salient in the sense that he, I thought, tried to bring a degree of rationality to bear on things but it was extremely difficult," says Professor Leeder, also a professor of public health and community medicine at the University of Sydney.
THERE'S no doubt IVF is a profitable industry, and one that can only grow more profitable as women continue to delay having children. A typical IVF cycle costs about $4000, although most couples can expect more than three-quarters of that fee to be reimbursed by Medicare. Does this flow of cash compromise the ability or desire of IVF doctors -- particularly those in the private sector --to call a halt to treatment at the appropriate time?
Dr Amin Abboud, a bioethicist from the University of NSW, has raised questions in the past about whether money-making is the real agenda of the IVF industry. In 2005, he claimed in an article in The Age that Australia was the only country in the world to have unlimited government reimbursement for IVF. "In Australia, the IVF industry is worth at least $170 million and growing at a rate of 8-10% a year," he wrote.
In the article, Dr Abboud quoted Professor George Annas, a bioethicist from BostonUniversity in the US, describing the US fertility industry: "The whole world of assisted reproduction has been described, I think aptly, as a kind of the Wild West mated with American commerce and modern marketing. You have a variety of highly professional individuals pitching their wares -- their success rates, their new technology, their cutting-edge technology -- to this highly susceptible group of infertile couples who are almost willing to try anything, and almost pay any price to get a baby."
There are certainly signs that the financial markets view IVF as a growth industry. In late 2007, as Business Day reported recently, ABN AMRO bought at least 53% of Monash IVF in a deal that valued the group at $200 million, and a few months later, Quadrant Private Equity paid $32.6 million for 10.9 million shares in IVF Australia, according to documents the newspaper quoted from the Australian Securities and Investments Commission.
Professor Leeder acknowledges there is a "certain degree of entrepreneurial theft that drives some of the providers", but says it is difficult for society to draw a line beyond which IVF should no longer be subsidised. "Why should we not in fact support the efforts of older women to get help whereas we don't question it with younger women?" he asks. "Simply because something costs more we don't use a different ethic to judge whether it's a service to provide."
However, Dr Kate Stern says IVF doctors are no different to any others in placing their patient's interests first. "Your first response is you're trained as a doctor, you're not trained as a business person, you're there to give your professional advice," she says. "I don't know any doctors that over-service in terms of this stuff."
While there might be a financial incentive for clinics to continue treatment, there is an equally strong, perhaps stronger emotional incentive to call a stop to treatment that has gone too far, she says.
"The trauma of every single failure is so huge, I'm more inclined to try and help them move on," Dr Stern says. She does everything she can to manage patient expectations from the very beginning, to avoid patients developing unrealistic expectations, and to avoid having to confront those expectations with the brutal reality.
"I hope that after a first consultation, when we've discussed the options, that they have a much more realistic expectation," Dr Stern says. "I ram it down their throats, selfishly, because it's hard work every time it doesn't work."
Sandra Dill, CEO of ACCESS -- a non-profit support and advocacy group funded in part by fertility clinics -- agrees that even a financial incentive is unlikely to encourage doctors to over-service.
"Given the devastation that brings I'm not sure that the financial incentive is something that people would push," says Ms Dill, who herself experienced 12 years of unsuccessful fertility treatment.
"I know from having seen doctors and know from friends who wanted to keep pushing and have been really angry about doctors who say 'you really should stop'," she says. "Doctors feel they have a duty of care to the person not to see them continually putting themselves through treatment that's not going to work."
But it can be very hard for a doctor to say no, even in the face of appalling odds, says Dr Read.
"When you're a doctor, the desperation some people have, even though you as a doctor know that it's not right for them to keep going on, you get caught up a bit in the fact that they say 'if there is any chance I want to have a try'," she says.
As Professor Chapman puts it, "people would go out of their way to take a 1% chance on a cancer treatment".
Sandra Dill believes doctors need to be very upfront with patients about their chance of success within a certain time frame.
"When a patient presents, look at the details and say 'if we can help you we should be able to do it in 3-4 cycles'," says Ms Dill. "It raises the expectation that there will be finite number of cycles undergone."
But ultimately, it is up to the patient to manage their expectations, and to know when enough is enough.
"I did want to go on trying," says Ms Dill. "The realisation that you'll never be able to have a child is very difficult. It's finally giving up a dream."
But there can be life after infertility, she says, and perhaps the most important thing for couples undergoing IVF to realise is that they can survive it.
"What I think is good is we can know then and be satisfied, apart from the disappointment of not realising our dream of having a child, that we did all that we could."
FACTS ABOUT FERTILITY
* A couple is regarded as infertile when they have not conceived after 12 months of regular unprotected sexual intercourse.
* About 15% of Australian couples of reproductive age have a fertility problem.
* In about 40% of infertile couples, the problem is a male factor, in about 40% it is a female one, and for the remaining 20% it is a joint problem, or the cause is unknown.
* For 80% of couples there is a proven medical cause.
* There is no evidence to suggest that stress causes infertility. There is plenty of evidence, however, that infertility causes stress.
* Three out of five couples conceive within six months of trying; one in four take between six months and a year. For the rest, conception takes more than a year, which means that there may be a problem.
Source: ACCESS
IVF BY NUMBERS
* There were 46,476 assisted reproductive technology treatment cycles in Australia in 2005, according to the National Perinatal Statistics Unit.
* The number of cycles rose 13.7% from 2004 to 2005.
* The average age of women taking part was 35.5 years in 2005, compared with 35.2 in 2002.
* The proportion of women over 40 years increased from 14.3% in 2002 to 15.3% in 2005.
* Women over 40 had 9917 cycles of assisted reproductive technology in Australia and New Zealand in 2005.
* Australia's "baby boom" -- a rise in fertility from 1.73 babies per woman in 2001 to 1.81 in 2005 -- was due to rising fertility in women over 30, says the Australian Bureau of Statistics.
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