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Maria, an elementary school teacher of Italian heritage, was 32 years old when she began psychotherapy. Three years earlier, she had cryopreserved embryos she created with her fiancé, Paul, after being diagnosed with Stage 2 breast cancer. When Maria called, she had just found out that her cancer had returned and that she had metastatic breast disease. She wanted therapy to clarify her thinking about the issues surrounding her death, her relationship with Paul, and whether or not to have children using a gestational carrier. Paul, age 29, from a large, Caucasian upper-class New England family, wanted to marry Maria. Maria’s close, but controlling family, added stress to her life. As their only child, they wanted to be involved in all aspects of her decision-making and treatment.
First and foremost in Maria’s mind was her desire for children. She looked surprisingly fit and healthy, and married Paul about a year after starting therapy. Maria reasoned that she might live several years and believed that her hope of giving life to her embryos/children and experiencing the role of loving mother was essential to her well-being. She knew that Paul would emotionally support her during her illness and wanted him to want to care for their children after her death. Maria felt that raising their children would be proof of his enduring love. However, Paul felt that caring for children during Maria’s treatment for cancer would be more than he could handle. Her parents wanted to proceed immediately with gestational surrogacy, since they wanted to give Maria everything that she desired; in so doing they could also “replace” their only child with a grandchild, softening the blow of losing her. Paul resisted pressure from Maria and her family to create a family as soon as possible.
Maria’s future death was a constant painful background note in her otherwise active life. She made videotapes for her future children. Messages were created for her children’s important future events (e.g., entering school, birthdays and graduation). She hoped that even if Paul could not be a parent during their time together, he would use the embryos in the future.
During therapy, Maria mourned the loss of everything she valued. She mourned the loss of a chance to experience life, be a mother, and grow old. She mourned the loss of her physical vitality and beauty. She mourned not having a future to look forward to. The thought of children was her main hope and gave her the strength to continue treatment for her cancer. “Caring” for her future children (through fantasies, messages and videotapes) gave her a sense of motherhood in the present and “immortality” in the future. Intermittently, Paul came to treatment with Maria when her sadness at his not using the embryos interfered with their relationship.
After Maria died (fours years after the reoccurrence of her cancer), Paul briefly entered therapy. He felt guilty for not wanting to use the embryos during her life and after her death; therapy helped him work through these feelings. Maria’s parents wanted custody of the embryos creating constant conflict with Paul. Three years later, Paul re-entered therapy. He wanted to destroy the embryos, a right that he had obtained from the consents he and Maria signed prior to cryopreservation. He felt angry, wishing the embryos had never been created; to him, they held his future hostage.
Introduction
The term fertility preservation refers to medical procedures that allow men and women to postpone childbearing. Fertility preservation may be used for both medical and social reasons and is performed throughout the world. There are many reasons for fertility preservation: cancer patients wishing to bear children after gonadotoxic chemotherapy regimens [1]; oocyte cryopreservation during IVF when sperm is unavailable [2]; patients at risk of losing their fertility potential due to genetic abnormalities [3]; patients with genetic disorders affecting fertility, such as Turner syndrome mosaicism [4,5]. Now, individuals undergoing gender reassignment surgery or men deploying to war may chose to preserve their fertility [6]. Importantly, oocyte cryopreservation has become a reality for women hoping to delay childbearing because of age-related fertility loss [7–9].
Fertility preservation is a rapidly changing field because of the developing nature of the underlying medical procedures necessary for successful preservation. Many of the procedures were initially considered experimental, then quickly evolved to be part of the reproductive specialists’ standard armamentarium. For instance, while commercial sperm banks have existed since the early 1970s, the technology for oocyte cryopreservation is a relatively recent development. The first birth of a child after oocyte cryopreservation was reported in 1986, but because of the very low success rate of the procedure, there were only five live births for over a decade [10,11]. Thus, mature oocyte cryopreservation was considered experimental, to be performed only at specialized centers for patients needing fertility sparing procedures because of medical necessity. In 2012, the American Society of Reproductive Medicine (ASRM) changed its policy about the experimental status of oocyte cryopreservation since vitrification (fast freeze) of oocytes yielded fertilization rates comparable to fresh oocytes when combined with intracytoplasmic sperm injection (ICSI) [12]. In the largest random controlled trial, 600 recipients using fresh versus vitrified donor oocytes were compared. Investigators found that 92.5% of the vitrified oocytes survived warming and there were no significant differences in fertilization rates, implantation rates or pregnancy rates per transfer between groups [13]. Currently, young women using vitrified ooctyes have the same probability of live birth per embryo transfer as women undergoing IVF or ICSI with fresh oocytes [13].
Thus, the practice of cryopreservation of vitrified oocytes for social reasons has been increasingly accepted in a variety of countries. In the USA, more than 50% of IVF programs offer fertility preservation for social reasons.
This chapter will focus on the counseling issues of women seeking fertility preservation. While there are several effective methods to preserve fertility in men (e.g., cryopreservation of sperm), most men do not receive counseling prior to their fertility sparing procedures when undergoing fertility preservation for medical reasons. In general, they do not need to preserve fertility for social reasons because they do not suffer the same age-related decline in fecundity as women. While sperm quality deteriorates somewhat as men get older, the reduced quality does not usually create problems until after the age of 60 [14]. On the other hand, ASRM and ESHRE recommend that women receive counseling for both medical and social fertility preservation [15]. While it may be interesting to speculate the reasons for this difference in policy, more is known about the emotional experiences and counseling needs of women undergoing fertility preservation.
In one sense, the motivations for fertility sparing procedures for medical and social reasons are similar. In both cases, women who wish to postpone childbearing for the future are trying to prevent a problem that has not yet occurred, and may face similar benefits and potential negative consequences. Cryopreservation empowers both groups of women in that they are trying to maintain control over their lives and protect themselves. Both groups, however, face devastating loss if the procedures fail to work and the women are unable to have genetically related children. Both groups must be knowledgeable about the fact that fertility preservation involves some (small) medical risk to themselves and to their future offspring.
However, fertility preservation for women with medical illness differs from fertility preservation for social reasons (see Table 15.1). Medical fertility preservation occurs during an emotional crisis and the counseling may need to be rapidly scheduled between other medical appointments (e.g., oncologist, surgeon, etc.) because of medical necessity. Conversely, fertility preservation for personal reasons may be planned long in advance. Women in a medical crisis may have concerns that are unique to their diagnosis (e.g., passing the cancer to the children; exacerbating cancer growth because of the IVF stimulation protocol). Having time with a knowledgeable fertility counselor during a medical crisis may be more welcome than counseling for social fertility preservation. During a medical crisis, counseling is part of other appointments with medical personnel. On the other hand, counseling for women who want to delay starting their families for social reasons may cause some women to fear judgment about their reasons for delaying having children, or feel shame that they have not achieved their goals of marriage and family. Some fear the counseling, mistakenly believing that counseling is performed primarily to determine parental fitness.
Comparison of oocyte cryopreservation for medical and social reasons [46, adapted].
| Freezing for Medical Conditions | Freezing for Social Reasons | ||
|---|---|---|---|
| Pro | Con | Pro | Con |
| Physical Risk to Woman | |||
| *Low risk for most patients | *Entails some risk to ER+ & PR+ breast cancer | *Low risk | *Medical procedures performed on healthy women *Risks exist *Pregnancy complications in older woman |
| Physical Risk to Child | |||
| *Same low risk as IVF | *Congenital problems same as any pregnancy (3%) *May have increaed genetic problems due to ICSI | *Same low risk as IVF | *Congenital problems same as any pregnancy (3%) *May have increased genetic problems due to ICSI *Disadvantage of having an older parent (child taking care of the parent; early death of parent) |
| Money | |||
| *Expenses may be covered by insurance as side effect of chemotherapy | *Occurs during other medical expenses for cancer; may not be covered by insurance; may not be able to afford GC | *May be worthwhile for peace of mind | *Elective procedure uncovered by insurance *$20K–40K to accrue enough oocytes |
| Societal | |||
*Allows woman to build family using her own genes *Avoids use of donor who must undergo medical procedures *Research may benefit other medical and social situations | *May involve a GS *No guarantee of successful pregnancy and childbirth | *Gives woman control over family building *Woman can complete education, find life partner and develop financial stability *Avoids rush into “bad” relationship *Avoids need for egg donation *Women can delay if partner unwilling to have children in present *Can donate unused oocytes to others or for research | *No guarantee of viable pregnancy and childbirth *False assumptions leading to decisions that limit the ability to have children *May encourage delay of marriage *Older parents may have to take care of children and parents at the same time *May never use oocytes *Discriminates against the poor *May allow society to ignore social support for working moms |
| Psychological Risks & Benefits | |||
*Provides hope during life-threatening illness *Avoids the need for a woman to choose between cancer treatments & biological children *May reduce overall stress due to active coping *Avoids pain of “double whammy” of cancer and loss of ability to have children | *May be false hope *Procedures may add stress *Worry that procedures may hurt cancer treatment and survival *Fear of passing on cancer genetically | *Women can control their reproduction *Women can assess benefits and risks in a reasonable manner | *False security and/or worry about the uncertainty of success *Psychological loss in accepting the reality of biology and life *Disappointment that procedure is not guaranteed to work *May have waited until too late for procedure to work and must confront loss |
| Oocyte Disposition | |||
| *Same as IVF | *Must confront reality of cancer and possible death *Must ensure proper counseling about who receives oocytes in event of divorce or death | *Less of a moral problem for some because oocytes are used and not embryos | *Must confront what to do with her genetic material and its disposition if unused *May not be able to use eggs because of problems in creating or storing |
The basic elements of fertility preservation counseling involve a counselor assuming several roles: psychoeducational, exploratory and supportive. The counseling is not unlike donor gamete recipient counseling. The fertility counselor may need to assess several factors in a relatively brief time frame and quickly prioritize the issues to address and the issues to ignore. However, a significant difference between fertility preservation counseling and recipient counseling is the lack of clarity about the use of the oocytes in the future. The fertility counselor does not know when (or if) the oocytes will be used and does not know the familial situation or context of their use.
Nevertheless, counseling for both groups is essential! Women with medical illness may be in crisis with attendant anxiety, panic, helplessness or feelings of loss of control. They may feel outside the norm and wonder “Why me?” They may want to talk about these issues or prefer to “remain strong,” disinclined to let their feelings show. Women freezing for social reasons may feel that they did not achieve their dreams of finding the right mate and feel a sense of failure or blame themselves. It may be the first time they are really confronting the fact that they waited too long to have children. Counseling for both groups involves a rapid assessment of the individual’s psychological strengths, weaknesses and coping styles. The counselor helps clarify and validate the complex emotions that may need to be sorted out. The emotional effects of important treatment decisions can be discussed at greater length than with other medical personnel. The counselor can serve as a present and future resource for the patient and most women are grateful that their medical team cares about their emotional well-being.
There is little or no research on the long-term psychosocial aspects of fertility preservation. Most research has focused on whether or not women actually want to preserve fertility. We know that they do, and that fertility preservation for cancer patients enhances the quality of life for women and men who want children [16–18]. Among young cancer survivors who are childless at diagnosis, approximately 75% desire children after treatment [19]. In one study of survivors of gynecological cancer, one-third of the patients identified with the statement that “part of one’s self had died along with the idea of giving birth” [20]. Cancer survivors are at significant risk for emotional distress if they become infertile due to treatment for their cancer and may suffer unresolved grief, depression, increased anxiety and reduced life satisfaction [18]. Given the recent development of fertility preservation for social reasons, psychosocial research on the long-term impact of oocyte cryopreservation is understandably rare. Most research has focused on the motivations of women freezing for social reasons, their demographic characteristics and speculations about the societal impact of social freezing [21–23].
The fertility preservation interview
Counseling for fertility preservation occurs in different contexts: in hospitals and medical centers as part of an interdisciplinary team approach; in independent reproductive programs unaffiliated with major university centers; and in the private office of the mental health professional (MHP). The fertility counselor may be embedded in a particular program or serve as a consultant to different programs. The counseling may be one session for psychological evaluation “for medical clearance” or be several sessions to work through therapeutic issues. Counseling may be initiated by the patient or through referral by a reproductive program.
The consenting process will be different in the different contexts. It is important to be clear with the patient who (if anyone) will have access to the information obtained during counseling and the purpose of the interview. Is the interview a psychological evaluation for another party or a counseling session for the patient alone? When the purpose of the interview is psychological evaluation, consent forms need to indicate the purpose and nature of the evaluation; to whom the information obtained during the evaluation will be released; psychological risks (if any) of the counseling; and any conflicts of interest inherent in the counseling. Patients who are evaluated in a medical context need to be informed whether or not their physicians or other personnel will have access to information obtained during counseling or evaluation, where (and how) the records are kept, and how long the information will be retained.
Suggested topics to cover during the clinical interview for fertility preservation are included in Table 15.2. The fertility counselor must use good judgment when deciding the issues to emphasize and the topics to ignore. S/he must try to balance different roles (psychoeducational, exploratory and educational), while being sensitive to the client’s needs.
The fertility preservation interview.
| The Fertility Preservation Interview |
|---|
| Reasons for preservation |
| Type of fertility preservation options |
| Individual’s support systems (family, partner, friends) |
| Abuse history (physical, emotional, rape) |
| Alcohol or other pharmacological abuse |
| Mental health history |
| Psychotherapy/counseling (past and present) |
| Prior and present psychotropic medication use |
| Prior psychological traumas |
| Activities that are stress relieving |
| Probability of success of the FP procedures |
| Patient’s perception of probability of success |
| Do FP procedures provide hope (realistic or not)? |
| Is it too late for FP to work? |
| Provision of legal and educational resources |
| What is individual’s experience of the interview? |
This chapter will illustrate the complex nature of fertility preservation counseling by presenting cases that bring up challenging questions. The case studies are not included to say that most of those preserving fertility have psychological problems. Rather, the fertility counselor or therapist needs to have knowledge of the questions and pitfalls in the fertility preservation process. For clarity in this discussion, “fertility counselor” or “counselor” will be used when referring to a MHP doing the consultative interview and “therapist” to an ongoing psychotherapeutic relationship.
In this chapter, countertransference refers to the thoughts, feelings and reactions that the care provider feels in the relationship with the patient that differ from the counselor’s usual thoughts and behavior. Counseling involves balancing the supportive, psychoeducational and exploratory roles. If the fertility counselor places unusual and undue importance on one of these aspects, it may be helpful for the counselor to look at his or her own emotions. The feelings and emotional reactions may be conscious or unconscious and the reactions can be helpful or hurtful to either patient or counselor/therapist. The more self-aware the therapist, the more the therapist can learn about the experience of the patient and ameliorate hurtful reactions to the patient or self. Since life and death issues are involved in fertility preservation counseling, strong emotions can be elicited in the counselor. In addition, many counselors are trained to do counseling and psychotherapy over many sessions; the limitations of brief contact during standard fertility preservation counseling can be especially challenging. Each case discussion will include the fertility counselor or therapist’s countertransference, as noted in the following discussion of the opening case of Maria.
Maria
Fertility preservation was undoubtedly a positive option for Maria. It provided hope during her darkest days before her death. Imagination, fantasy and dreams of her future children inspired her and gave her a sense of legacy beyond her life. Nevertheless, her grief at not being able to use the embryos during her lifetime was, at times, unbearable; in addition, the same fantasies and dreams were a potent source of pain and guilt for her husband, Paul. The videotapes for the children made “real” the fact that he would never have children with Maria and thus was losing both his wife and his children. Their intermittent marital discord over this issue was painful for both.
In general, patients are relieved that they have done what they could do to retain their ability to create a future family. However, Maria brings up the question of whether or not to use embryos when a parent will die before the child’s age of majority. The customary answer to the question of preserving fertility in patients with advanced disease is that it depends on the support systems in place for the well-being of the child and for the people involved in the child’s life. For Maria, fertility preservation was a positive experience. The thought of children was the one bright spot she had in a sea of pain and loss. Initially, her parents benefited from the preservation. The existence of embryos softened the loss of their daughter. Later, they experienced unbearable grief that they could not use the embryos. The loss of grandchildren compounded their pain. First they lost their only child and then they lost their grandchildren. The years following her death were filled with mourning, grief, anger and conflict.
It is easy to forget the multiple players in the patient’s life. An individual who is going through cancer treatment or other serious illness may focus on themselves to the exclusion of others. For example, it may be hard for the patient to face the fact that a child will lose their parent or only know a mother who is very ill, if embryos are used during metastatic disease; the therapist may also find it difficult to hold in mind the multiple points of view. Once embryos are created, the family situation may evolve over time in directions not envisioned during cryopreservation. While treatment was going on, the therapist found it hard to “contain” the complexity of the different perspectives of Maria and her family. In addition, the therapist wanted to believe that Maria would live for a long time and denied the immediacy of her death. The therapist had fantasies about Maria’s future children and she felt grief for Paul’s loss and the loss of grandchildren for Maria’s parents. The therapist understood the power of their desire for a grandchild but also knew that they wanted a “replacement child.” This case illustrates the value of fertility preservation as well as its potential for creating pain. The therapist wanted to maintain a “happily ever after view” about the value of fertility preservation and its positive role in patients’ lives.
Fertility preservation for medical reasons
As stated previously, before any information is obtained from the patient, the patient needs to understand the purpose of the interview and the individuals who will receive the information. The most important part of the interview is the opportunity to talk in a safe “holding environment.” What this means is compassionately validating the patient’s concerns without lecturing or judging [24–27]. Some patients are very emotional and find it to be a relief to express their feelings [28,29]. Others prefer to hold themselves together by not discussing their painful emotions. The patient may be in shock and denial. If so, the patient’s defenses must be respected. Ignoring the warning signs of a patient’s disinclination to talk about her feelings may flood her with unbearable anxiety and pain. The “elephant in the room” may be the patient’s fear of death and her fear of the loss of the ability to have biological children [30–33]. The patient may not be able to talk to members of her family and/or support system about her concerns. Many individuals in the patient’s environment are so distraught that the patient needs to “buck up” to reassure them. Some women are embarrassed to be emotional or discuss intimate matters with their physicians.
Danielle
Danielle, age 34, sobbed during her required interview for embryo cryopreservation prior to chemotherapy for breast cancer, Stage 1. She was planning to be married in three months. The large and expensive wedding had been planned for over a year. She was “petrified” and angry that she needed a mastectomy and would lose her hair just before her wedding. She did not want sex and could not envision a honeymoon. In the past, she had been treated for panic attacks, anxiety, depression and alcoholism. She was proud of her years sober but feared her current situation would cause a relapse in drinking. Her Prozac did not seem to be working. She felt embarrassed discussing her past psychological history but was relieved that her physicians would not know. (Records of the clinical interviews for fertility preservation were not included in the patient’s medical record.) The interview with the fertility counselor helped her retain control of her emotions during her consultations with her oncology and reproductive specialists. She had a place to “let down” with the fertility counselor. Fertility preservation gave her hope that she would be able to have a family and lessened her fears that her fiancé would leave her because of the cancer and her perceived disfigurement. However, finances were an issue because of the wedding. Her parents spent most of their savings on the wedding. Should she change her wedding plans or ask for help from his parents?
Because of her cancer treatment, Danielle experienced a loss of self-esteem, shame and disfigurement. She feared judgment about past actions and feared she would be rejected by important individuals in her life. Danielle appreciated talking to the fertility counselor about fertility preservation because everyone she knew was telling her “everything would be alright.” When with her physicians, she was in a “problem-solving mode,” paying close attention to what she had to do for fertility preservation. The counseling session provided an opportunity to talk rather than reassure others. The positive and painful experience with the fertility counselor reminded her of the importance of “talking” and she contacted her former therapist.
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