Abstract
Psychosocial support in fertility clinics or centres providing third-party reproduction has changed over time as reproductive techniques have developed; social norms, legal systems and counselling standards have evolved; and access to information expanded with the world wide web. Today patient support and infertility counselling involves supporting and assessing patients, donors, surrogates and their partners, and the parents and children at all stages of family building from initial decision-making about choices to later family life. Infertility counsellors also address support needs of staff providing fertility care. However, not all centres provide this range of services. The present chapter will review essential components of patient support in third-party reproduction provided by clinic staff and infertility counsellors, highlighting key features of good practice according to the Human Fertilisation & Embryology Code of Practice (2019, 9th edition).
11.1 Third-Party Reproduction and the Human Fertilisation Embryology Authority Code of Practice
As described earlier, third-party reproduction refers to fertility care that involves medically assisted reproduction using gametes or embryos that have been donated or provided by a third person (donor) to enable an individual or couple (intended parents) to become parents. It can also refer to the use of surrogacy, where a woman (surrogate) other than the intended parent carries the pregnancy.
The Human Fertilisation Embryology Authority (HFEA) Code of Practice (9th edition, 2019) helps clinics comply with the legal requirements to prepare patients for treatment, as set out in the Human Fertilisation and Embryology Act 1990. According to this code, the person responsible, often the clinician, should have sufficient knowledge of all aspects of the infertility clinic to supervise its activities properly including its psychosocial aspects. Furthermore, the Code provides very clear guidance that for all treatments, including third-party reproduction, centres must ensure that patients are well prepared prior to treatment for all aspects of treatment Section 4.1, HFEA). This preparation makes it mandatory for the patient, donor, surrogate and their partners to be provided with information as is relevant for their treatment option (see [1] for details of information provision), be given a suitable opportunity to have a discussion about the implications of taking the proposed steps and be offered the opportunity to be supported through counselling. The code also makes clear that patients should be supported throughout treatment and provides two mechanisms by which this could be achieved: patient support that all members of staff are expected to provide and specialised psychosocial counselling that only qualified infertility counsellors can provide. Quality indicators are used to assess current and expected performance regarding these two components of psychosocial support (i.e. benchmarks for quality). In the 9th edition, for the first time, there is a clearly defined section about expectations for patient support.
In this chapter we present a brief overview of the psychosocial aspects of providing fertility treatment, especially as is relevant to third-party reproduction (see HFEA Code of Practice for more in-depth information).
11.2 HFEA Patient Support Policy and Counselling Requirements
11.2.1 Patient Support
Fertility clinics in the United Kingdom are required to develop a Patient Support Policy (see Box 11.1) that outlines how the Centre providing treatment ensures that patients, donors and their partners receive appropriate psychosocial support before, during and after treatment from all staff they encounter. This psychosocial support is considered to be patient-centred care (PCC), which should be defined within clinic policy. PCC consists in providing care that is ‘ … respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” [2, p. 6]. In fertility care, 11 PCC dimensions have been identified as important to patients (e.g. availability of specialised infertility staff, continuity of care during treatment, clear communication, high patient involvement and emotional support). Guidelines based on systematic review of available evidence exist to help staff develop these policies [1]. Quality indicators for patient support services are not yet developed because this is a new component of the HFEA Code of Practice. However, at minimum it is expected it will involve patient satisfaction.
Box 11.1 Key Points of the HFEA Code of Practice 9th edition (2019) Patient Support Policy
HFEA Code of Practice 9th edition (2019) stipulates that Centre’s Patient Support Policy must outline the
Patient-centred care at the clinic (what it is, role of each staff in delivering it)
The internal and external resources available to patients (information, peer-to-peer support, events, interventions customised to treatments and different user groups)
Strategy for communication with patients
Annual program of staff training for different aspects of patient support (tailored to staff roles)
Data collection methods for quality indicators, relevant monitoring, feedback and quality improvement (e.g., user satisfaction with support, offer of counselling, provision of healthy lifestyle advice)
Centre management should ensure that staff members who are in contact with patients, and donors and their partners (where applicable):
Follow the ‘patient support policy’
Are prepared to offer appropriate emotional support to people suffering distress
Understand and can explain the role of counselling
Know when and how to refer people to the centre’s qualified infertility counsellor
Are sensitive to any ethnic, religious, societal, cultural or other factors that may influence the kind of support which is appropriate for an individual
11.2.2 Preparation for and Counselling Prior to Treatment
The law requires that all patients be prepared for treatment, and that preparation involves providing information (see [1] for information required for informed consent), discussing implications of treatment choices and the offer of counselling.
The law states (for counselling): ‘A woman shall not be provided with treatment … unless she or any man or woman who is to be treated together with her have been given a suitable opportunity to receive proper counselling … ’ [1], p. 26. The law makes very clear that the offer of counselling is mandatory, and the groups to whom it should be offered, namely the individuals considering any treatment that:
Uses donated gametes or embryos (including mitochondrial donation)
Creates embryos in vitro
Requires the storage of gametes (though some exceptions)
Involves donation of gametes or embryos or mitochondrial (for treatment of others, research or training or any reason)
Requires the consent for a man (in heterosexual couples) or woman (in lesbian couples) to be treated as the legal parent of any child as a result of a woman’s treatment
11.2.3 Types of Counselling
The HFEA Act (1990) gives only minimal information about what counselling should comprise and does not stipulate who should provide that counselling. As a result, there is potential for confusion in the HFEA Code of Practice about the nature and provider of counselling. The HFEA Code of Practice recognises potential for confusion over the term counselling, and therefore explicitly differentiates ‘proper counselling’ in two ways. One type of counselling described in the law and code of practice is counselling about the implications of using particular treatment options (‘ … proper counselling about the implications of her being provided with that treatment … ’ [1], p. 26). This form of counselling is referred to as ‘discussion of implications’ in the new Code of Practice ([1], Section 4.2, p. 34). The second form of counselling is counselling directed specifically at providing specialised psychosocial care related to infertility and fertility care. This form of counselling (referred to as ‘infertility counselling’, Section 2.14, p. 22) is mentioned in the Code of Practice but not in the law. The HFEA Code of Practice explicitly states that this type of infertility (psychosocial) counselling should be differentiated from the counsel provided in activities that other staff do, namely discussions about the implications of treatment; assessment of a person’s suitability to receive fertility care, to store or donate their gametes or embryos (including mitochondrial donation); and the provision of information for informed consent or the supportive relationship expected from clinical staff towards their patient (or donors) (Section 3.7).
It is important to know the distinction between these two forms of counselling because the providers are different. Clinic staff with the appropriate skills, knowledge and experience of the specified treatment can discuss the implications of treatment with patients but only ‘infertility counsellors’ specialised in providing psychosocial care can provide ‘infertility counselling’. In previous codes of practice (e.g. 7th edition) these two forms of counselling were sometimes confused by the use of the generic term ‘implications counselling’ to refer to discussions about implications.
Aside from these main types, specialist counselling may be recommended if required (e.g. genetic counselling, counselling for mitochondrial donation, counselling for oncology patients).
Doctors should become knowledgeable about infertility counselling and how to make an optimal offer of counselling (see Box 11.2). Centres are required to report as a quality indicator the number of patients offered and taking up, or declining, infertility counselling.
Box 11.2 Key Points of the Offer of Infertility Counselling
According to the HFEA the offer of infertility counselling is mandatory for all fertility care, including third-party reproduction. The offer and uptake (or not) of counselling should be documented.
The HFEA requires that the offer of infertility counselling be made so as to optimise the opportunity for patients to take it up. It should be
Offered to all patients, donors, surrogates and their partners where it is legally recommended to do so (schedule 3ZA), with both members of a couple encouraged to attend together
Made as accessible as possible for all (i.e., patients, donors and surrogates), including to those having previously donated or received treatment
Described as a routine part of the treatment pathway
Offered prior to treatment with sufficient time for people to consider and take up the offer before consent
Repeated throughout treatment, donation or storage processes and routinely following adverse events and/or unsuccessful outcomes
Offered separately to surrogates and intended parents
Made with written information about the counsellor (name, availability, accessibility)
Only qualified counsellors with specialist competence in infertility can offer psychosocial counselling. The counsellor may be staff at the centre or external to it (depending on patient preference). Several organisations provide accreditation of counsellors in the United Kingdom.
11.3 Psychosocial Issues in Third-Party Reproduction
The HFEA prefers that patients discuss with infertility counsellors the implications of their treatment options and choices (Section 20.9, HFEA Code of Practice) because such discussions often raise emotional and psychosocial issues, especially in the case of third-party reproduction. If the patient decides not to take up the offer of counselling then the person responsible should ensure the patient has the opportunity to discuss implications of the treatment with another member of staff with sufficient skill, knowledge and experience. In third-party reproduction, discussion about the implications of treatment with donated material (gametes, mitochondria) should be done separately from discussion about the implications of treatment in general. Detailed and clearly presented written information and guidance should be provided to support the discussion about implications, at a level of complexity tailored to the needs of those receiving the information. The centre should actively probe understanding of all parties and encourage individuals to ask questions. Treatment should be provided only when the centre is satisfied that all parties understand all aspects of the arrangement and are entering into the arrangement freely and voluntarily.
11.3.1 Overview of Implication Discussion (Embedded or Not in Infertility Counselling)
The psychological issues explored prior to treatment will differ according to the treatment option and relevance of issues to them as a specific patient group (patient, donor, surrogate, partner). This psychological discussion will often involve valuing and deliberating the pros and cons of the different options available to patients. The implication discussion also involves discussion of legal issues. Consent and legal parenthood are complex processes that involve consideration of the partnership status (married, civil partner), potential future events (death) and multiple perspectives (patients, donors, partners, child). Clinics differ in regards to who is authorised to take consent. Discussion of legal issues regarding being a donor or a surrogate or the use of donated gametes is not possible here but professionals should be aware that discussion of these very complex issues and the legal preparatory work related to them (such as surrogacy, treatment of same-sex couples, etc.) will require specialised staff (e.g. solicitors) (see HFEA Code of Practice for more information).
The implication discussion is confidential. However, patients need to be informed in advance that staff (including infertility counsellors) have a duty of care and may need to disclose any information as permitted by law that gives rise to concerns about the suitability of a person to donate gametes, whether a surrogate or a prospective parent (i.e. welfare of the child).
11.3.2 Psychosocial Issues in Third-Party Reproduction
The implication discussion needs to consider the range of psychosocial issues to emerge throughout the process of third-party reproduction (from initial decision-making to future life with children). Psychosocial issues need to be addressed in advance of consenting, before irrevocable events have taken place. It should be noted that the specific issues to emerge during the implication discussion(s) can apply to all intended parents or to only specific groups (e.g. heterosexual couples, lesbians). Tables 11.1 and 11.2 present some of the issues to emerge.
11.3.2.1 The Decision to Use Third-Party Conception
When patients discuss the implications of using third-party reproduction they often revisit how they came to this decision, and what they perceive to be the implications to themselves and their current and future family (see Table 11.1). Most people come to the decision to use third-party reproduction after a significant period of deliberation (sometimes years). It is a significant decision for many reasons but especially because in most societies there is a very strong importance attached to the genetic connectedness of family. This revisiting is an important aspect of understanding that could affect all aspects of the patients’ experience of third-party reproduction.
Table 11.1 Topics considered in the decision to use third-party reproduction
| Issues typically addressed by most intended parents using donated gametes |
|---|
| Acknowledging the emotional burden of involuntary childlessness, infertility and failed treatment cycles (if applicable) |
| Supporting mourning of fertility and the fact that there may not be a genetic relation between the child and (both) parents; exploring the consequences of the possible (genetic) asymmetry in the parent–child relationship between parents |
| Exploring beliefs and values attached to third-party reproduction (incl. type of donation such as open/known or anonymous donation, double donation, etc.) and its alternatives (e.g. adoption, fostering, remaining childless) |
| Exploring the current personal and family situation as well as the short- and long-term implications of using donated gametes/surrogacy (for example the possibility that the wider family may not understand the use of third-party reproduction, potential reactions of grandparents to a non-genetic grandchild, potential stigma towards the child; the risk of the surrogate not wishing to relinquish the baby or sign the parental order; impact of ethnicity and race on perceptions of and reactions to third-party reproduction) |
| Providing medical, legal and financial information (typical treatment procedures, regulations regarding legal parenthood, the number of offspring per donor documentation of donor records, right of the child to access these, etc.) |
| Supporting decision-making (type of donor, type of surrogate) |
| Informing about the implications of treatment (e.g. medical issues such as the limitations of donor screening in avoiding transmissible conditions and psychosocial issues such as how and when to disclose the nature of conception to the child and significant others, the possibility of meeting the donor/surrogate and/or [half-]siblings) |
| Reviewing (and providing) support needs during treatment, as patients may experience treatment failures |
| Exploring (and providing) ongoing support needs after the birth of the child (including supporting disclosure, facilitating contact between offspring (and family) and donor/surrogate (and family); helping on issues related to egg and sperm imported from other countries (where the 10 family limit does not apply); discussing future child use of direct-to-consumer DNA testing. |
See ref. [2].
In addition to the issues that most intended parents experience, it is important to recognise that different patient groups also have needs, feelings and experiences specific to them (see Table 11.2). The diversity of patients accessing third-party reproduction is considerable and include both single people (cisgender men and women, trans and intersex individuals) and different couple constellations (heterosexual, gay and lesbian couples, couples where one or both partners are trans or intersex). Within these groups, people seek access to third-party reproduction because of issues relating to infertility, but also as a chosen route to parenthood (e.g. lesbian couples). The most commonly treated patient groups in the United Kingdom, according to HFEA statistics (Human Fertilisation and Embryology Authority, 2018 Fertility Treatment 2014–2016: Trends and Figures), are heterosexual couples, lesbian couples and single women. However, it is important that clinicians also understand the specific needs and experiences of trans and intersex individuals, gay couples and single men.
Table 11.2 Specific patient needs among heterosexual couples, lesbian couples and single women (additional to those listed in Table 11.1)
| Specific issues experienced by most common user groups of third-party reproduction | ||
|---|---|---|
| Heterosexual couples | Lesbian couples | Single women |
|
|
|
11.3.2.2 Choosing the Donor and Thinking Through the Future Relationship with Him or Her
It is important for people considering third-party reproduction to discuss which donor to choose. This can involve consideration of physical characteristics but also the type of and level of contact and closeness with an identifiable donor that the intended parent(s) and the donor desire. In discussing such issues patients may request and make use of non-identifying the information (e.g. pen portraits) donors provide about themselves (interests, likes and dislikes, approaches to life and educational background). Patients have a right to request this information at any stage of treatment.
It is established practice among clinicians and parents to choose a donor who resembles the couple, particularly in physical features and ethnicity. Although a common approach, it can be problematic because it reinforces the idea of race/ethnicity being an inheritable characteristic.
Since 1 April 2005, anonymous donation and the use of non-traceable imported gametes is no longer permitted in the United Kingdom. All treatments with donated gametes or embryos in the United Kingdom use an identity-release framework whereby the child upon request can receive identifiable information (name, address) about the donor at the age of 18 years. In addition to this, some parents choose to use a known identified donor. A known donor is one known to the family (e.g. a sister, friend) before the start of treatment or a contact the intended parent(s) purposefully developed for donating, for example, via online communities. It is worth noting that among lesbian and gay communities especially, known donation has been informally practiced for a long time.
Another key area of consideration (and decision) is the level of contact and closeness between the donor and the parents and child. The child cannot know that they have been conceived with donated gametes or embryo unless the parent(s) disclose this information to them (or they inadvertently discover it). UK law does not require parents to tell their child but the HFEA Code of Practice and 2008 Act (1) recommends that parents should disclose this information to any resulting child at an early age. This information enables the child to grow up in full knowledge of their genetic origins and, in due course, to realise their right to seek and initiate contact with the donor in the future (if they so desire). The level of closeness with the donor is first defined by the parents and the donor (and then when more mature, the child). Closeness may shift and change as these relationships develop over time. It is possible for a child to grow up knowing their donor and other children conceived from the same donor (i.e. so-called donor siblings), and contact and a sense of closeness to a varying degree. These relationships can evolve and be facilitated through clinics (with appropriate legal considerations), national (e.g. UK Donor Conceived Register and Donor Sibling Link, both HFEA), international donor registers and family efforts facilitated by social media and online websites (e.g. genetic ancestry). Research to date suggests that some children do try to contact donors out of curiosity or for medical reasons [20]. Only in rare situations do such contacts result in difficulties but too little research exists to draw firm conclusions. Future studies tracing how the 2005 law impacts on family relationships will be needed post 2023 when the first offspring child benefiting from the law will be 18 years old. Donors of children conceived earlier than 2005 have also come forward to re-register as identifiable donors.
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