When is Enough, Enough? - by Dr. Janet Takefman (Fall 2010)
Printer-friendly versionWHEN IS ENOUGH, ENOUGH?
by Janet Takefman, Ph.D., Reproductive Health Psychologist
Fall 2010
Just recently I was listening to a presentation by an American reproductive endocrinologist who stated that his clinic had the reputation of being the ‘go to’ place for women wanting to try IVF, who, because of advanced age or elevated FSH levels, had an extremely low probability of success. Although he acknowledged that, given the location of his clinic, finances were usually not a concern for patrons, he also stated that he believed it was therapeutic for such couples to at least attempt conception, as a necessary precursor to beginning the grieving process of not being able to have their wished for genetic child. For the most part I agreed with this opinion until he added that for some couples they needed to do 10-20 IVF cycles before they could accept that treatment would not work. That’s when I interrupted and suggested that in such cases his clinic was in fact impeding the grieving process by colluding with the couple that they still had a chance with repeated attempts. The question: “When is enough, enough?” or when to stop treatment for having the couple’s genetic child is a question which confronts every fertility clinic and patient.
This question is particularly problematic to answer because, unlike with other forms of treatment, there is no continuum of benefits in doing further IVF treatments, as a live birth is the only satisfactory outcome. However, there is also no clear endpoint for cessation of unsuccessful treatments as there is always a theoretical probability of success. Furthermore, the decision to end treatment is often based on a different set of criteria depending on whether it is physician or patient-initiated. In the best of all worlds, the physician should base his decision on medical indicators, whereas the patient usually weighs personal, emotional and economic considerations. For these reasons and others it is well accepted that ending treatment is a difficult and complex psychological process for both physicians and patients alike.
Stage Theory has been used as a framework to explain the long and multifaceted process required for infertile individuals to transition from believing they are “not yet pregnant” to accepting they are “not going to be pregnant”, to use Throsby’s terminology1. This process is viewed as a necessary rite of passage for patients to ultimately come to terms with letting go of the dream of a genetically-conceived child. There are three psychological studies that deal with this transition process, all based on qualitative research, that are remarkably similar in their findings.
Blenner’s2 study was based on the reports of twenty-five infertile, married couples as they moved from pre-treatment to post-treatment. Her stage of “disengagement” marked the beginning of the process of ending treatment. The three steps of disengagement included “letting go”, “quitting and moving on” and “shifting the focus”. Blenner described the period of “letting go” as a turning point when couples started to question the fairness of life and the investment of further energy into treatment. It was the time couples began to re-examine their options. Emotionally, individuals started to feel less pain and more in control of their lives. They found peace in the belief that they had done all they could do to try to reach their reproductive goals. In the next phase, “quitting and moving on”, patients ceased treatment. The predominant emotion observed was relief. “Shifting the focus”, the final step, was described as a peaceful resignation with a new focus on the future. Although pangs of grief recurred, usually precipitated by specific events such as a friend’s pregnancy, for the most part people were able to cope with their biological childlessness.
In Daniluk’s3 longitudinal study, a four-stage model based on a continuum of themes was constructed. These included: “hitting the wall”, “reworking the past”, “turning toward the future”, and “renewal and regeneration”. Daniluk calculated that each stage lasted an average of ten months, which means it takes an infertility patient more than three years to come to terms with involuntary, biological childlessness. During the ‘hitting the wall’ stage couples came face-to-face with their worst fears and the undeniable reality that their infertility was permanent. This was a stage of profound sadness and grief. Couples spent the second ten-month period attempting to make sense of their years of trying to conceive. During this stage, anger and frustration were expressed and couples questioned the viability of their marriages. This “reworking the past” stage was one defined by instability. The next ten months, referred to as “turning toward the future”, was a time when couples demonstrated a willingness to consider future life scenarios other than biological parenting. The final stage, “renewal and regeneration”, was a time when couples regained a sense of who they once were, while taking comfort in knowing they had survived great adversity. At this point, most of the couples were able to identify some greater purpose to their infertility.
Throsby drew her model from in-depth interviews with fifteen women and thirteen couples, all of whom came from IVF programs without having achieved a live birth. Her study identified seven key rationalizations or discourses that participants used to come to terms with having abandoned treatment. These included such explanations as “doing everything possible” and “fitness to parent”. These allowed participants to make sense of their childlessness while still feeling they could conform to society’s norms and expectations. Throsby regards motherhood as more of a social and cultural imperative than a biological one, and thus gaining closure for infertile women requires them to adhere to a social ideology regardless of their actual capacity to reproduce.
Based on these studies, we have learned that in order to help couples begin the process of ending treatment it is critical that physicians and counsellors give them the opportunity and place to review their infertility experience emotionally and cognitively, as that is a necessary prerequisite to putting their dream to rest and moving forward. Thus, rather than encouraging them to continue on with treatment because “miracles happen”, we should give patients permission to explore whether emotionally they have reached the end of their tether and help them do a cost-benefit analysis of continuing treatment versus ending it. Costs should include not only the obvious financial ones, but also costs to the relationship, to keeping their lives on hold, to their emotional well-being, to their careers, to relationships with family and friends, etc. They should be equally candid about the benefits of continuing treatment, such as continued association with the clinic, meeting societal expectations, etc.
As a counsellor, if I am doing my job right, it is my role to first and foremost bear witness to the person’s grief and loss and to help them find meaning in all they have endured, to feel proud that they have done all they reasonably could and survived the crisis of infertility. Following that, I can facilitate their creating a new reality for themselves with a redefined sense of self and purpose, which includes renewed life goals and immediate future plans. Moreover, based on research findings and clinical experience, I can convincingly reassure them that the pain of infertility does subside and that a fulfilling and contented life is attainable. Finally, if they are determined to be parents, I can assist in providing guidance and resources on alternative options to natural conception, like adoption, surrogacy or gamete donation. I will listen with a non-judgmental ear as they purge their fears and worries and finally put them to rest, and then gently guide them to embracing these alternatives with pride, not shame, as a second choice initially, but not ultimately, second best. It is a role I feel honoured and privileged to provide, a job that has taught me much about the resilience and integrity of the human spirit.
References
1 Throsby K. No-one will ever call me Mummy: Making sense of the end of IVF treatment. New Working Paper Series Issue 5, November: London School of Economics, Gender Institute, 2001.
2 Blenner JL. Passage through infertility treatment: A stage theory. IMAGE 1990; 22:153-8.
3 Daniluk, JC. Reconstructing their lives: A longitudinal, qualitative analysis of the transition to biological childlessness for infertile couples. J Counsel Develp 2001; 79:439-49.
About the Author
Reproductive Health psychologist Janet Takefman, PhD, is Assistant Professor in the department of Obstetrics and Gynecology, McGill University Health Centre and Director of Psychological Services at the McGill Reproductive Centre. The author of over 60 articles, monographs and research presentations, Dr. Takefman also runs a private clinic in Montreal, where she can be reached by phone at (514) 912-4952 or by e-mail at j_takefman@hotmail.com.