20 January 2020
The final session of the Progress Educational Trust (PET)‘s annual conference ‘Reality Check: A Realistic Look at Assisted Reproduction‘ asked: ‘Should Fertility Patients Be Given What They Want, or What They Need?’
Sally Cheshire, Chair of the Human Fertilisation and Embryology Authority (HFEA), said that what fertility patients want most of all is a baby, or at least the chance to have a baby. She explained that many patients will do anything to achieve their aim, and that the regulator’s job is to help them achieve this in the best way possible, as part of good care. She went on to explain that many patients won’t (at least initially) get what they want, raising the point that 60 percent of patients self-fund their treatment, so the HFEA must help ensure that all patients get what they need.
As part of what patients need, Cheshire spoke about the information available to patients and the fact that honest, unbiased opinion about what might work needs to be published and transparent. She explained that it is difficult to regulate new and emerging treatments (not least the ‘add-ons’ discussed in earlier conference sessions), and that many of these treatments are not, in fact, currently regulated by the HFEA. However, the HFEA can offer information allowing patients to make informed choices about potential treatments, especially when it is sometimes hard for patients to find uncontradictory and unbiased information for themselves.
Overall, Cheshire’s message was that the HFEA does not support patients spending money on (often unnecessary) ‘add-on’ treatments, citing an HFEA survey from last year, showing that three-quarters of patients had at least one add-on with their treatment. The HFEA rates 11 add-ons using a traffic light system. The green rating is reserved for procedures or techniques that have been shown to be effective and safe by at least one good-quality, randomised clinical trial. It was reported in the survey that none of the most common add-ons used were rated green.
Cheshire argued that clinicians selling add-ons without evidence do the fertility sector, and patients, a disservice. The HFEA will continue, as part of the inspections process, to look at information available on clinics’ websites and at claims made by these clinics, as well as keeping an eye on some advice coming from the non-regulated sector.
In the next presentation, Dr Jane Stewart, chair of the British Fertility Society (BFS), asked what was difficult about taking medical advice. She said that the role of ‘Dr Google’ and events like the Fertility Show has both good and bad aspects. It is good that there is much up-to-date information available that can usefully stimulate debate, but this is mixed with out-of-date and commercially influenced information. How might patients tell the difference?
Dr Stewart went on to explain how the doctor-patient relationship has evolved over time, towards a spirit of mutual co-operation and patient-centred care, describing the doctor as a ‘bridge between the world of medicine and the expectations and needs of patients’. She pondered whether reproductive medicine had redefined patients as consumers (she insisted on using the word ‘patient’) and asked what the harm is in giving all patients what they want. The harm, she said, can come from the fact that many patients are vulnerable, some are ill-informed, and most will do anything (including pay) to have the chance of having a child. Thus, the doctor has a duty to help the patient come to the right decisions for them, even if that means challenging their expectations and assumptions. ‘It’s OK to say no’, she argued.
Professor Bobbie Farsides then told us about the power of words, explaining that ‘wants’ are something that we feel we would like to have, do or be. Simply, a preference. By contrast, ‘needs’ are things we require, because they are essential or important, not just desirable. She explained that it is easier to claim support for needs as they have more societal endorsement, whereas some wants are not seen as acceptable (though some individual assertions of needs are also deemed unacceptable). ‘What starts as a dream becomes a project that’s all-consuming’, she said, adding ‘for example the desire to become a mother turns into a need’.
Structural issues shape expectations in this domain, including the way society thinks and talks about parenthood and about what women are expected to do. Professor Farsides said that given these significant pressures, we (including the fertility sector) must ask whether there is a particular form of vulnerability in patients wanting what others want them to want. She argued that professionals must present a ‘fair offer’, for patients to consider and maybe accept, that is not against the patients’ interests.
PET’s head of communications Dr Catherine Hill then gave a personal response to the wants-versus-needs question, telling her story of infertility and the phone call, when she was 21, that changed the course of her life. What she wanted was a large family, though what she needed after that call was help and support, but she was offered none. She described this time as traumatic, leaving her needing to try to forge a new identity as a potential fertility patient.
On starting fertility treatment at 37 years of age, she was shocked to find that she was not eligible for IVF on the NHS, but pleased to be told she ‘had the eggs of a 30-year old’. This turned out not to be true – the test she was given only measured quantity, not quality. A new clinic told her to use an egg donor, and, when she used her own eggs, the clinic suggested preimplantation genetic screening (PGS) (itself a contentious ‘add-on’). This resulted in two embryos, and led to her having a daughter.
Dr Hill said she wished she had been better informed throughout this process. She argued that fertility patients’ needs include emotional support, fair access to NHS-funded IVF, fertility education (which becomes more pressing as more and more procedures are offered), and better fertility preservation options. She added that funding of NHS fertility services, as well as monitoring of the funding situation, is incredibly important.
In the discussion chaired by Fiona Fox, chief executive of the Science Media Centre, there was generally much agreement with the speakers. Cheshire, responding to a point from the audience, said that fertility education was not a key responsibility of the HFEA but that they try to do it anyway. She added that the BFS has an ongoing education project, and suggested that perhaps the HFEA could be a conduit for information in new ways in future. Dr Hill added that it was hard to fathom why fertility education and the Fertility Fairness campaign lacks funding, when the fertility industry is worth so much.
Professor Farsides said that the old-fashioned view that the regulator was something to push against no longer holds true. She argued that clinics, and the fertility industry more widely, should work with the regulator to ensure that patients get both what they want and what they need.
The Progress Educational Trust (PET) would like to thank the sponsors of its conference – the Anne McLaren Memorial Trust Fund, Edwards and Steptoe Research Trust Fund, CooperSurgical, the European Sperm Bank, Ferring Pharmaceuticals, the London Women’s Clinic, NGA Law and the Institute of Medical Ethics.