2.1 How to deliver information on fertility treatment

Personal beliefs and cultural practices are central to our patients’ lives. Fertility staff also have their own personal values that may affect their daily practice. Some of them may be prejudiced against different group populations or specific treatments such as same sex couples, singles or surrogacy. Fertility staff should recognise these situations and openly discuss at weekly meetings how these personal beliefs can influence their provision of care (1).

Staff involved in patient care (doctors, embryologists, nurses, psychologists and assistants) must recognise that each patient has a unique background such as country of origin, language, ethnicity, personal and religious beliefs as well as sexual orientation. This background will also shape their decisions about a certain treatment or medical procedure (2, 3, 4).
For example, some couples will not agree to gynaecological examination by a male doctor. In certain ethnic and Muslim patient groups in particular, masturbation is prohibited or viewed as a sexual activity to be followed by a bath. Men’s disengagement from treatment may reflect their discomfort with sperm collection, misunderstanding of the procedures or fear of being diagnosed as infertile (5). In these situations, a male or female team member should ask the man and woman about any constraints relating to these issues in order to resolve the situation by adopting a flexible approach and adjusting protocols, as necessary.

Staff must also consider patients’ prior knowledge and experience relating to infertility diagnosis, fertility treatments and medical language. It should be noted that some patients will be encountering fertility issues for the first time and may be overwhelmed by the medical and legal jargon used. Some biological concepts may well be unfamiliar to even well-educated individuals. For instance, not everyone will understand what is meant by gamete donation and genetic inheritance (6). Doctors and other healthcare professionals must carefully establish whether the treatments proposed have been fully understood. Explanations must be provided and Informed Consent should be discussed clearly and succinctly (7) (8).

Evidence demonstrates that effective staff–patient relationships and communication are commensurate with greater patient satisfaction, treatment compliance and outcome realisation. Dissatisfaction in terms of communication and the manner in which information is provided may lead to patient drop-outs or a change of clinic. Team training could be delivered through specialist services, role-playing, couple satisfaction surveys and discussions with couples who have undergone fertility treatment in the past, amongst other things (9).

Supportive doctor-patient communication involves establishing a good relationship even with “difficult patients” (who may be angry, demanding, depressed or anxious). This will include collecting relevant information, understanding the patient’s perspective, assisting in the decision-making process and respecting the patients’ feelings, wishes and expectations. A key challenge for clinicians is understanding that, in many cases, the patient is a couple who often have different feelings, opinions and desires to be reconciled (10) .

Some studies show important aspects of the ‘information, communication and education’ dimension identified by patients. The latter expect and want sufficient time to discuss their individual case with the fertility clinic staff. They are looking not only for clear guidance but also a shared decision. They appreciate written information about treatment options that could help them become parents. The emotional aspects of treatment should also be discussed along with how to cope with the burden of ART. Patients want to receive both general and specific information related to their diagnosis. “Too much information kills the information” – “information overkill!” (11). Patients in drop-out studies have mentioned lack of empathy and negative interactions with staff or insufficient care for the male in the partnership as key factors in their decision to discontinue treatment (12) (13).

Both similar and different issues are at stake when patients travel abroad for treatment. Indeed, cross-border similarities exist in terms of the patients’ perspective of important care issues. The same human factors come to the fore in the different countries. In order of importance, these are ‘relationships with staff’, ‘communication’, ‘patient involvement and privacy’ and ‘emotional support’ (14).

However specific concerns may arise. It may be difficult to ensure appropriate consent when there is no common language. One option is to translate the written information into a well-known language and provide counselling and psychological support in a language understood by patients (15).

The legislation of the country of origin must be taken into account in order to avoid legal problems in the future. For certain treatments (gamete donation, same sex couples, surrogacy, singles) legal advice should be sought in the country of origin. Patients undergoing infertility treatment or ART sometimes have to be given bad news, whether in the context of diagnosis, poor prognosis or treatment failure. Staff members involved in this process should develop skills on how to interact and communicate negative results in a more sensitive and caring manner, adopting specific protocols that meet patient approval (16).

Patients should be explicitly informed of success rates and of the likely need to repeat treatments. Several studies highlight the patients’ determination and commitment to undergo the necessary treatments to achieve pregnancy. If treatment proves unsuccessful, they consider giving up, due to the emotional impact of what they deem to constitute failure. However, there is strong evidence that success depends on more than one complete cycle of treatment including the transfer of frozen embryos. Therefore, the treatment plan discussed with patients should be based on the possibility of multiple cycles, and doctor and patient should discuss expectations of success based on this assumption (17).

Practice shows the importance of discussing potential parenthood, namely the number of children desired, the risk of twin pregnancies and the woman’s age, etc. Doctors and patients should consider these aspects when deciding on treatment. The psychosocial risk of twin pregnancies should be taken into account for single women. The success vs. burden of less social support must be discussed with the patient and reviewed before the final treatment decision is made(IAD or IVF) (18).

Doctors and embryologists should provide information on the importance of creating embryos for subsequent use during ART treatments in order to maximise the chances of having a child. However, strategies should also be put forward to limit the number of embryos to be created. Patients must have the opportunity to discuss the creation and use of embryos in depth, taking their personal, moral or religious convictions into consideration. Practice shows that many patients accept the creation of surplus embryos without giving sufficient thought to the future use of unused embryos. People tend to change their minds after IVF treatment and once their family is complete.

Decisions regarding the fate of unused embryos are difficult and emotionally distressing. This explains why people tend to postpone the decision for as long as the law or clinics allow. The available options should be discussed once the legal storage period has elapsed. If donating the embryos to medical research is a viable option, information on the various types of research may facilitate the decision-making process (19). If patients decide to donate the embryos, counselling is strongly advised in order to explore all the issues regarding the future welfare of donors, recipients and children (20). Clinics should take into account, as far as possible, patients’ wishes on what to do with surplus embryos. Provided that there is no legal prohibition, clinics should facilitate “farewell” rituals or compassionate transfers (21).

Fertility professionals would benefit from learning about the physical and emotional responses to treatments. Numerous studies have shown that one of the main reasons why patients discontinue fertility treatments prematurely is because of the difficulty in dealing with the resulting emotional distress caused by an unsuccessful treatment or poor prognosis. Psychological symptoms associated with infertility are similar to those linked to other serious medical conditions. Patients are expected to feel high levels of stress, anxiety and depression if treatment proves unsuccessful (22).

In addition to information on procedures and success rates, patients should be guided on how to deal with the critical stages of the process – namely the waiting time for results and the delivery of results. They should be prepared for the high levels of stress expected between embryo transfer and the pregnancy test, as well as the deep shock and sadness associated with a negative result. Clinical practice shows that patients benefit from planning ahead for this period (23).

Patients should not be given results unexpectedly. The fertility staff need to decide when and how to deliver the results. “Allowing them to initiate the call or return to the office to receive the results in person may increase the couple’s control and decrease their sense of powerlessness”. Patients who received negative results could express greater dissatisfaction with the communication process. Some practices can minimise the impact of a negative outcome. Use different ways to inform patients (e.g., written materials versus verbal delivery). Individualising the way in which these results are communicated can minimise the emotional response and prevent patients from leaving the clinic. Implementing follow-up protocols, for example a telephone call from the doctor or nurse within 24-48 hours of receiving a negative result, can decrease the feeling of abandonment. The next step should be a care consultation during which the doctor could offer factual explanations, treatment alternatives, if appropriate, and encourage patients not to give up if they have a good chance to succeed (23), (24).

Clinical practice shows that a grieving period is expected after a negative result. This can last for at least 1 month. A break in treatment is sometimes desirable to allow individuals to rebalance and take stock of the situation. If distress persists, the individuals in question should be referred for psychological care (25). Many couples decide not to start or continue ART treatments, even against doctors’ advice. The decision to discontinue treatment is mainly made by the couple, regardless of the cause of infertility (26).

Staff must be aware of the high drop-out rates and the factors that determine it, namely patients, clinic-related reasons and treatment type (nature, intensity and medical intrusiveness). Patients may sometimes discontinue treatment due to their own aversion to the treatment, such as treatment-related fear, especially second-line therapy, religious values or balancing success vs. the cost of treatment (27). However, a great deal of research has shown that patients give up fertility treatment prematurely due to psychological and emotional factors, especially in the case of those presenting psychological vulnerability such as previous depression or anxiety disorders (28).

Most patients have psychological resources to cope with the demands of treatment, even if they relate high levels of distress to specific stages of treatment. However, according to research into the risk of developing emotional problems, 20% of patients experienced significant distress. These persons are more likely to give up treatments and engage in unhealthy behaviour such as smoking, poor diet and alcohol consumption, etc. These patients should be identified well in advance in order to provide appropriate support (29).

Fertility staff must be informed about the specific psychological needs that patients experience at different stages during treatment. Doctors and nurses should be aware of the patients’ emotional state and refer them for psychological support or counselling if necessary. Written information must be provided on the psychological support available throughout treatment. For patients of a different mother tongue, written material must be offered in their specific language (32).

Patients should be encouraged not to discontinue treatment whilst the prognosis remains favourable. However, statistical data show that after approximately the fifth unsuccessful treatment cycle, the chances of achieving pregnancy are very low. Patients in this situation should be supported in the decision-making process as the decision to stop treatment is very difficult. Patients expect their doctor to guide them throughout the entire treatment process, and rely on his or her expertise to advise them on their chances of success. Most patients will continue treatment unless their doctor clearly advises them to stop. Patients tend to foster unrealistic hopes, sometimes based on unlikely successes. Doctors should gently quell these hopes and refrain from showing excessive optimism that could lead couples to continue (31).

Clinicians should inform patients from the outset that not everyone will achieve the much desired outcome, i.e. pregnancy. As this is a difficult issue for staff, it would be beneficial if patients could anticipate this possibility in advance. Doctors are available to discuss treatment options with patients but when all treatment options fail or patients drop out, it would be beneficial to have a final appointment to discuss other options (adoption or acceptance of childlessness) or to help identify those patients most likely to experience long-term emotional difficulties (32).

Where appropriate, patients should be informed of other treatment options that guarantee greater chances of success. A move to gamete donation usually occurs after many years of unsuccessful treatments. However, clinic staff addressing the use of donor gametes can expect resistance from patients in this regard. Several studies show that both heterosexual men and women prefer genetic over non-genetic parenthood, especially among individuals with a lower level of education (33),
It would be useful to outline this hypothesis at the start of the process, particularly when financial resources are limited or if age or other factors impact. (34)

Evidence suggests that both donor-conceived children and their parents are psychologically well adjusted and do not differ from own-gamete conceived children. Practice shows that couples mainly fear that the lack of biological ties will affect their bond with the children. As a general rule, they also have some concerns about the health, motivation and profile of donors. Explanations about the donor screening and selection process coupled with information relating to studies focusing on this type of family may encourage them to accept this form of parenthood, when the desired outcome is to take a baby home (35), (36), (37).

In the case of gamete donation in heterosexual couples with a strong desire to maintain secrecy and conceal treatment despite awareness of the significance of disclosure, patients’ desire for privacy must be respected, and special attention should be paid to donor matching in the case of different races or ethnicities where fewer donors are available.

The gamete donation protocols and practices at the fertility centres tend to operate on the basis of heterosexual couples with infertile partners. Nowadays, the lesbian population forms a significant portion of patients presenting for ART. It is important to have a better understanding of the reproductive considerations that lesbian couples face, their expectations and fertility treatment goals (38).

The practice of donor matching according to the characteristics of the infertile parent no longer makes sense especially for single woman or same sex couples, who demonstrate considerable openness when it comes to disclosing treatment. Whenever possible, the wishes of these patients must be taken into account or patients should be allowed to participate in the donor selection process (39).

Practice shows that when entering the gamete process, patients have important questions to address. How involved will they be in the donor selection process? It this based entirely on centre criteria, which do not necessarily include the partner’s wishes? Will patients be able to make their own choices? In the case of foreign gamete banks, will they be able to select the donor? In the case of non-anonymous donation, how will the child be able to obtain the name of the donor, since they will need to prove they were born from a specific donor?

Clinics benefit from establishing protocols in order to answer all of these questions. Patients should be informed about the legal status of the treatment, i.e. anonymous, open identity, identity release for offspring and the possibility of known donors. The same applies to the amount of information provided such as general physical characteristics, photographs, personal and family health history and personally non-identifiable information (40).

Nowadays, clinics must be aware of the greater importance of providing personal donor-related information as disclosure is strongly advised, particularly in the case of single women and same sex couples, where secrecy does not exist and the donor is often mentioned in day-to-day family life (41). Even in the case of anonymous donors, an extended profile with personal information should be offered in order to facilitate the family narrative and satisfy normal childhood curiosity (42).

In gamete donation treatments, the size of the desired family and the relevance of sharing the same genetics must be considered in advance. In such cases, patients should be advised to reserve more straws for future treatments, since the same donor may not be available in future due to quota reservations.

For same sex female couples, shared motherhood using the ROPA (Reception of Oocytes from the Partner) method is a patient-friendly process. The couple must decide which option is best based on the desired family size (43) (44).
In the case of gamete or embryo donation, counselling is strongly advised for all patients to allow them to explore all of the issues related to this particular method of creating a family (45) (46).

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