Should we prepare fertility patients for ending treatment without a baby?

Building a family and having children is a desire shared by many people. However, the growing tendency to postpone parenthood, more and more often due to sociodemographic changes in society, means not all individuals can have children naturally. This makes fertility treatment the only option for these people to achieve biological parenthood. Many decide to pursue this path, but the question posed is whether they are adequately informed and prepared to embark on this journey.

Fertility treatment is an incredibly emotionally, socially and physically burdensome experience. Data from the Human Fertilisation & Embryology Authority (HFEA) national database shows that just five percent of patients in the UK undergo more than three cycles of IVF and ICSI treatment, and more than three in every ten end all treatment cycles (up to six cycles) without the children they wished for. Extensive qualitative and quantitative research shows that ending treatment unsuccessfully triggers profound and unexpected feelings of sadness, grief and loss, which, for many, can last for several years. Most patients feel 'abandoned' by their clinic and 'left to cope on their own' at the moment they are most fragile, feeling unable to accept the loss and move on with their lives.

Fertility guidelines and regulatory bodies (ESHRE, HFEA, NICE) have been calling for clinics to support patients who have not had a baby (and no new cycles will be attempted), but there is a lack of evidence-based interventions that can be used for the (eg, individual or couple interventions, psychoeducational interventions, interpersonal interventions, interactive or self-administered interventions, simple or complex interventions).

To address what we argue is a neglect of duty of care, the Centre for Fertility and Reproductive Health Psychosocial Research Wales developed MyJourney, a free-of-cost self-guided online intervention that includes information, mindfulness meditations and journaling hints aimed at helping patients working towards acceptance of their unfulfilled wish for children. It also includes signposting to further information and services. MyJourney is available online in English, Spanish (from Europe and Latin America), German and Portuguese, and recent feasibility testing published in Human Reproduction showed it improves the well-being of those who use it within ten weeks.

But it is worth asking, given the high likelihood of ending fertility treatment unsuccessfully and the loss it represents, shouldn't patients be supported beforehand and informed and forewarned about it from the moment they consider treatment?

It is well-established that high-standard quality patient-centred care implies treatment and care to be mutually agreed upon by patients and staff and guided by what matters most for patients. According to the international evidence-based ESHRE guidelines, high-standard care implies the provision of routine psychosocial care along with the medical care offered at fertility clinics. It defines psychosocial care as 'care that enables couples, their families and their health care providers to optimise infertility care and manage the psychological and social implications of infertility and its treatment'.

Psychosocial care aims to address the most common emotional and social needs patients exhibit during their fertility journey and should be the responsibility of all members of the staff (doctors, embryologists, nurses, midwives, counsellors, social workers, psychologists, and administrative personnel). The Centre for Fertility and Reproductive Health Psychosocial Research Wales has been focusing on understanding if providing psychosocial end-of-treatment care when a birth has not resulted from treatment, would be acceptable to both patients and staff and possible to routinely implement it at fertility clinics. End-of-treatment care has also been referred to as psychosocial care for unsuccessful fertility treatment, or PCUFT, in recent research published in Human Reproduction and aims to inform and prepare patients for the psychosocial implications of their treatment ending unsuccessfully.

A total of 342 patients responded to our mixed-methods survey used for our research. Results showed that nine in every ten patients want to receive end-of-treatment care, with 73 percent reporting they would like to receive it before initiating their first treatment cycle. However, fewer than four in every ten patients reported they were currently receiving end-of-treatment care, and many expressed it did not meet their needs and preferences.

Discussing adverse outcomes (eg, complications that can happen during treatment procedures, the possibility of having to undergo multiple treatment cycles and ending treatment unsuccessfully) is challenging for everyone involved and is one of the most distressing jobs for fertility staff. Results from a recent multi-country qualitative study (presented last month at the ESHRE Annual Meeting in Copenhagen) on end-of-treatment care showed that staff are unaware that most patients want to receive this care and be informed in advance about all possible adverse outcomes of treatment, and feel they lack the know-how to engage in such conversations and lack resources to support this provision. To promote the routine implementation of end-of-treatment care at fertility clinics, the Centre for Fertility and Reproductive Health Psychosocial Research Wales worked with staff, patients and patient-advocates to produce research-informed educational resources. The final prototype of these resources consisted of two webpages (both translated into the four languages mentioned above): one to support patients and another to support staff.

The patients' webpage aims to inform patients about the of ending treatment unsuccessfully (eg, common emotional reactions, relational strains), answer patients' frequent questions and concerns, and refer them to other routes to (and beyond) parenthood and support sources, including the Myjourney web app mentioned above. The staff's webpage provides information about why, when and how to provide end-of-treatment care according to patients' preferences, how to address patients' frequently asked questions and concerns, and offers additional resources (poster, flyers, video) for staff to use to ease this provision.

While this work showed we are walking in the right direction, it also indicated this is not enough and is just one step forward. Staff reacted very positively towards the end-of-treatment care resources but also expressed ambivalence and concerns about if, how, and when to use them and offer end-of-treatment care to their patients, with their primary concern being they could crush their patients' hope before they even started trying. Further work is needed to understand how best to support staff and clinics in this endeavour to ensure patients have the opportunity to be fully informed about the realities of their fertility treatment.