‘For women at the end of their fertility journey, deciding when to stop treatment is incredibly difficult. It is important to always remain sensitive to the fact that their wished-for future as parents (or in completing their family in cases of secondary infertility) not being achieved, can lead to isolation, loss of identity and purpose for a time.’ (9)
Provide support to patients in making the decision to stop treatment.
Provide access to counsellors, allow time during consultations for patients to talk about their medical situation and chances of success, and encourage access to support groups with others who are in the same situation.
- ‘Referral to counselling can help people to process their treatment experiences, grieve their losses, reflect on and make decisions about alternative parenting options or plans for a childless future.’ (9).
Provide tools to patients to give them support in making decisions about stopping treatment, coping with the feelings of grief, thinking about alternative parenting options or deciding how to move forward with their lives without children.
‘An increasing number of people are reaching the end of their reproductive window without having the children they wished for. Substantial research shows that adjusting to this can be challenging, as people often undergo a grief process.’ (10)
- Provide patients with access to support tools such as ‘My Journey’, which is a self-help interactive programme that provides step-by-step support to help develop skills to address several aspects and ease acceptance of an unfulfilled wish for children. ‘Research by My Journey indicates that guided psychosocial support can facilitate people’s adjustment to their unfulfilled wish for children. It may also encourage people to seek further support if they feel they need it.’ (10)/ 52
- Create an in-house support hub, app or website to ensure patients can be supported as they consider alternative parenting options or moving forward with their life. This promotes continuity of patient care and ensures patients feel fully supported throughout their treatment experience.
- Provide information on support organisations and charities that support patients in making the decision to stop treatment and how to live a fulfilled life without children (for example: Fertility Network, Resolve, Gateway Women, Walk in our shoes).
Provide information to patients on other routes to parenthood, but in a sensitive manner, with the opportunity to talk through them if the patient would like to.
- Information about alternative parenting options is often available in clinics, but it is important that nurses can sensitively signpost women and their partners to other resources about living life without children. This needs to be managed according to the needs of that woman (and partner), particularly as feeling alone and isolated are common following unsuccessful treatment, and they may not yet be ready to hear about alternatives.’ (9).
- Link with charities that provide this information so it can be backed up by support. For example, the Fertility Network UK have provided Options Packs to patients in the UK which include information on donor conception, adoption, and fostering, together with support for people who are involuntarily childless or who have a family smaller than they had hoped for as a result of secondary infertility.
Conclusion
A survey by the HFEA of over 1000 patients and their partners found that improving patient satisfaction is likely to have the greatest impact on overall satisfaction with the fertility process as a whole. (6)
As many research studies have shown, infertility patients experience distress, depression, anxiety and a reduction in their quality of life. ‘It is important for infertility providers and counsellors to offer assistance to these patients by way of psychological interventions and emotional support.’ (3)
A review by Cardiff University and the Domar Center for Mind/Body Health (7) states that ART should look at enhancing the delivery of treatment for patients and staff by minimising the sources of burden felt by patients, clinics and staff.
It states that two specific burdens can be addressed:
- Patient vulnerability – this can be tackled by screening for psychological distress, referring to appropriate support, reducing barriers to support and identifying the points of treatment where more support should be offered.
- Negative patient – staff interactions – this can be tackled through staff training in communication and interaction skills, encouraging shared decision-making, prioritising support that addresses aspects of treatment that are problematic for patients and staff, and monitoring the outcome of these changes on patients, staff and clinics.
Implementing the recommendations from this section into your processes will ensure that your patients have a better treatment experience, which will help them cope better with treatment and the outcome (positive or negative). They will feel happier, more in control and less overwhelmed and they will have more trust in you as a clinic and their treatment plan.
Resources
- The psychological impact of infertility: a comparison with patients with other medical conditions – Domar, A.D., Zuttermeister, P.C., Friedman, R.
- Fertility Network UK Survey on the Impact of Fertility Problems, 2016, Payne, N., Van den Akker, O.
- The Relationship between stress and infertility. Rooney, K.L., Domar, A.D.
- Why do patients discontinue fertility treatment? A systematic review of reasons and predictors of discontinuation in fertility treatment. 2012. Gameiro, S., Boivin, J. Peronace, L., Verhaak, C.M.
- ESHRE guideline: routine psychosocial care in infertility and medically assisted reproduction – a guide for fertility staff, 2015. Gameiro, S., Boivin, J., Dancet, E., de Clerk, E., Emery, M., Lewis-Jones, C., Thorn, P., Van den Broeck, U., Venetis, C., Verhaak, C.M., Wischmann, T., Vermeulen, N.
- HFEA Pilot national fertility patient study, 2018, HFEA.
- Optimal in-vitro fertilization in 2020 should reduce treatment burden and enhance care delivery for patients and staff, Gameiro, S., Boivin, J., Domar, A.D.
- A cross-sectional cohort study of infertile women awaiting oocyte donation: the emotional, sexual and quality of life impact. Carter, J., Applegarth, L., Josephs, L., Grill, E., Baser, R.E., Rosenwaks, Z.
- Royal College of Nursing Fertility Care and Emotional Wellbeing RCN Guidance, 2020
- My Journey, website developed by Cardiff University Fertility Studies, in collaboration with APFertilidade – Portuguese Fertility Association and Fertility Network UK