When IVF fails it can be devastating – so why do clinics offer so little in the way of support?
Four in every ten people who start IVF treatment in the UK end it without having their child, according to data from the UK fertility regulator, the Human Fertilisation and Embryology Authority.
Fertility clinics’ websites are prone to promoting their success rates or enthusing about the latest technology that will revolutionise treatment. But research has found these websites often report on the clinic’s pregnancy or live birth rates without relevant information on how these figures were calculated, or how many patients were involved.
It has also been shown that some clinics make claims about treatment benefits without including supporting evidence.
But what is less talked about is the effect that unsuccessful treatment has on patients.
This article is part of Women’s Health Matters, a series about the health and wellbeing of women and girls around the world. From menopause to miscarriage, pleasure to pain the articles in this series will delve into the full spectrum of women’s health issues to provide valuable information, insights and resources for women of all ages.
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The reality of failed IVF
Ending treatment unsuccessfully can be devastating for patients, throwing them into deep sadness, grief and loss. Those who go through this experience lose their sense of purpose and struggle to make sense of a new reality that denies a so desired family and parenting role.
Patients talk about feeling isolated from the “fertile world” and alone in their grief, with its constant pain making it hard to be with friends who have children. Indeed, the end of unsuccessful treatment is such a challenging experience that it takes on average two years for patients to come to terms with their loss, recover their sense of balance and renew their hope for the future.
Research shows that mental health and wellbeing are significantly impaired during this process and that around one in ten people never fully recover.
Research has also found that many of these patients that are unsuccessful in their treatments say they feel abandoned by their fertility clinics when they most need support – which can lead them to become angry and frustrated. Indeed, as it currently stands there aren’t any support interventions available to infertile patients, that are tailored to support them when treatment ends unsuccessfully.
The lack of evidence-based support for parents in this position is so striking that it prompted me and my colleagues to develop MyJourney, a free self-guided app that provides step-by-step support to ease the acceptance of an unfulfilled wish for children. Our research shows that using MyJourney is linked to improvements in wellbeing within ten weeks – and that these improvements seem to last for at least six months.
Support and care
I believe that clinics need to do more to forewarn patients of the reality of IVF failure. Not only would this mean people go into the process properly informed, but it would also offer patients the opportunity to discuss and prepare for grief and sadness if it does happen.
Fertility staff also need to give patients a realistic view of treatment that does not soften its well-known challenges. Patients want to know what to expect and how to prepare for it. They want to have the “bigger picture” view of what the treatment entails so they can make informed decisions. Patients agree these are difficult conversations to have but the research shows that most think the pros outweigh the cons.
Essentially the fertility industry needs to provide the best care for those who take a chance on IVF. And all patients should be able to access support during and after treatment, irrespective of its outcome.
Dr Gameiro works for Cardiff University. She reports consultancy fees from TMRW Life Sciences and Ferring Pharmaceuticals A/S, speaker fees from Access Fertility, SONA-Pharm LLC, Meridiano Congress International and Gedeon Richter, grants from Merck Serono Ltd, an affiliate of Merck KgaA, Darmstadt, Germany.