VIEWS AND REVIEWS

When treatment appears futile: the role of the mental health professional and end-of-treatment counseling Susan C. Klock, Ph.D. Division of Reproductive Endocrinology and Infertility, Departments of Obstetrics and Gynecology and Psychiatry, Feinberg School of Medicine, Northwestern University, Chicago, Illinois

The end of treatment, whether initiated by the medical team or by the patient, represents a difficult transition for the patient. The mental health professional, as part of a multidisciplinary team, can offer important assistance and support to the patient as they move through the end of their infertility treatment. A description of Use your smartphone the topics covered in exit counseling is provided, as well as indications for referral. (Fertil SterilÒ to scan this QR code 2015;-:-–-. Ó2015 by American Society for Reproductive Medicine.) and connect to the Key Words: Psychology, counseling, ending treatment Discuss: You can discuss this article with its authors and with other ASRM members at http:// fertstertforum.com/klocks-end-treatment-counseling/

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or most individuals and couples, having a child is an important life goal and is considered a significant step in establishing adult identity (1). Moreover, the goal of having a child is strongly reinforced in our pronatal culture. Fortunately, the majority of women and men will be able to meet their reproductive goals on their own, and their transition to parenthood will proceed uninterrupted; but for the subset of women and men who are unable to have a child on their own, many will opt to seek assistance from a reproductive endocrinologist and begin infertility treatment. Infertility treatment has provided tens of thousands of individuals and couples the opportunity to meet their family-building goals. With the advances in reproductive technologies, a couple coming to the infertility clinic for the first time will have every reason

to be optimistic about their chances of having a child. However, there are times when treatment does not work or becomes too difficult to continue, and the opportunity for reaching one's treatment goals is dashed. When treatment is perceived as futile, the mental health professional (MHP) can play a pivotal role in helping the patient work through the emotional reactions to treatment failure and develop a strategy for moving forward. The end of treatment can come when the physician determines that further treatment is futile or the patient decides that they have exhausted their resources and cannot continue. The Ethics Committee of the American Society for Reproductive Medicine has defined treatment ‘‘futility’’ as treatment that has a %1% chance of achieving a live birth (2). The Ethics Committee recommends ‘‘thorough dis-

Received March 4, 2015; revised May 5, 2015; accepted May 6, 2015. S.C.K. has nothing to disclose. Reprint requests: Susan C. Klock, Ph.D., Division of Reproductive Endocrinology and Infertility, Departments of Obstetrics and Gynecology and Psychiatry, Feinberg School of Medicine, Northwestern University, 676 N. St. Clair, Suite 1845, Chicago, Illinois 60611 (E-mail: [email protected]). Fertility and Sterility® Vol. -, No. -, - 2015 0015-0282/$36.00 Copyright ©2015 Published by Elsevier Inc. on behalf of the American Society for Reproductive Medicine http://dx.doi.org/10.1016/j.fertnstert.2015.05.008 VOL. - NO. - / - 2015

discussion forum for this article now.*

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cussions’’ at the beginning of the patient–physician interaction when there are indications that the treatment may be futile. These discussions between the patient and his or her doctor can be difficult but helpful to provide the patient with context and realistic expectations for the likelihood of treatment leading to a live birth. A second path to the end of treatment may be when the woman or couple comes to a juncture in treatment when they realize that they are physically and emotionally exhausted. Exhaustion of resources— physical, psychological, financial—in addition to the passage of time are all frequently cited reasons for couples to discontinue treatment (see review by Gameiro et al. [3]). The process of ending fertility treatment is difficult, with each patient having his or her own set of beliefs, values, and expectations related to their fertility. Mental health professionals have been providing infertility counseling for the past 30 years as assisted reproductive technology has become both more complex and widespread (4). As technological advances and options for family building through assisted reproductive technology have 1

VIEWS AND REVIEWS developed, the need for and utilization of psychological services has also increased. In fact, many programs have psychologists or social workers on staff or in an ongoing consultative relationship to provide care for infertile individuals and couples. Mental health professionals frequently provide counseling for depression, anxiety, and relationship problems in the context of infertility treatment, but the area of counseling around ending treatment issues has received less attention. This ‘‘exit counseling’’ (5) provided by the MHP can provide much needed support at this difficult time. End of treatment counseling is important because it can help the patient adjust to the realization that they will not meet their reproductive goal. The MHP can provide a neutral environment for the patient to process his or her thoughts and feelings about treatment and to consider the decision about ending treatment. Additionally, the counseling can provide an avenue for planning future goals. In addition, the MHP can provide reassurance to the patient or couple that it is normal to feel stress associated with treatment and decisions to end treatment. For the patient or couple who is exhausted by treatment and who does not want to continue even though there may be other treatments available, the MHP can provide permission for the couple to stop (5). The MHP professional can also ‘‘bear witness’’ (6) to the patient's unique experience and provide an opportunity to vent their anger and frustration at the situation. Last, counseling can facilitate grieving the loss of the wished-for child (7, 8). Referral to an MHP for exit, or end of treatment, counseling is straightforward. Clapp (7) has listed some useful topics for physicians and other health care providers to address with their patients on a routine basis, to get a sense of how they are doing and to determine whether endof-treatment counseling would be beneficial. These include [1] asking frequently how they are doing, including how they are managing as a couple (if applicable); [2] reviewing the pros and cons of each treatment option, including the psychological and emotional aspects of treatment; [3] reminding patients that they can stop or take a break at any time; [4] suggesting that they speak with an infertility counselor to help sort out thoughts and feelings about stopping treatment. Additionally, if the medical staff anticipates that the end of treatment is coming, then a referral to an MHP can be made in the context of that discussion with the patient. Burns (5) has suggested that all couples ending treatment without a pregnancy be offered exit counseling on a routine basis, to decrease stigma and increase the likelihood of adaptive adjustment after treatment has failed. Although not all patients will take up the offer for counseling, the majority of couples are in favor of offering exit counseling, and it is perceived as helpful for the patient to know that such services exist (8). From a practical standpoint, the medical professional can make a referral for end of treatment counseling by normalizing the experience for the patient with a comment such as, ‘‘The end of treatment can be difficult. Sometimes it can help to talk it over with someone. We have a counselor on staff who has expertise in this area and could help you talk it through, if you would like’’ (or for a referral to a counselor not on staff, ‘‘There is a counselor we work with frequently if 2

you would like to speak with someone.’’). By framing the referral in this way, using an empathic but matter-of-fact tone, it can convey to the patient that it is normal to feel distress at the end of treatment and that counseling is a routine recommendation, thus minimizing the stigma that some may feel. The referral to an MHP does not imply an end of care by the physician but instead expands the treatment team for the patient by providing another facet of multidisciplinary care. Counseling can be as brief as a session or two or extend over a longer period of time, depending on the patient and his or her needs. A fundamental goal of end-of-treatment counseling is for the patient to have a neutral, supportive place in which to speak freely on a wide range of topics related to their fertility treatment. Whether the MHP is on staff or an outside consultant, a neutral setting, which is a central tenet of psychotherapy, refers to the attitude of the therapist who is objective and nonjudgmental as they engage in the counseling with the patient. The MHP's only agenda is to provide support for the patient to express his or her thoughts and feelings and determine his or her own plan. In a neutral setting the patient can process and assimilate their adjustment to unsuccessful treatment. During these discussions the patient's or couple's hopes, dreams, and motivations to become parents are discussed (9). Although there are some universal motivations related to parenting, each person has their own particular wish in reference to how they envisioned themselves as parents. The MHP's neutrality allows the patient's thoughts, feelings, and opinions to be expressed freely, unencumbered by expectation. A second goal of end-of-treatment counseling is to help the patient or couple define their endpoint of treatment. If the physician has determined that treatment is futile, then the decision to end treatment is out of the patient's control. However, with third-party reproduction there are many permutations and combinations of treatment that the patient or couple has to volitionally choose to pursue. Defining the end of treatment in this context is specific for each person or couple; some patients will not consider IVF for religious or other reasons, whereas others will opt to build their families using donor gametes, gestational surrogates, or combinations of contributors to reach their dream of a child. In discussing the end of treatment the MHP can help the patient determine what limits, if any, they have on the type of treatment they will undergo. The MHP can review the different familybuilding options, such as third-party reproduction or adoption, and their implications. In addition, child-free living can be discussed. During these discussions the MHP can provide information about these options and lead discussions with the patient regarding the perceived pros and cons of each option. For example, after several unsuccessful cycles of IVF, a couple can be referred to discuss the next step options, such as oocyte donation, adoption, or child-free living. During the session each partner can describe their view of the advantages and disadvantages of each option. Additionally, the patient or couple can be encouraged to consider how they will feel about each option both now and in the future. Using a future time frame can be helpful for the patient or couple to consider the long-term implications of their VOL. - NO. - / - 2015

Fertility and Sterility® decisions. If the individual or couple opts for further treatment or adoption, the MHP can facilitate a discussion about next steps, including the time frame for more treatment, ways of coping, and the implications of parenting via third party or adoption. Alternatively, if the individual or couple decides not to pursue further treatment or adoption, the focus is on childfree living. In this context the MHP reviews the treatment the patient has undergone and discusses his/her/their emotional reactions to it. During these sessions the losses related to the infertility experience are identified and grieved. As Mahlstedt (10) has noted, there are several losses inherent in the infertility experience, and working through these losses is the central theme in end of treatment counseling. After going through unsuccessful fertility treatment, the individual may experience a loss of self-esteem by failing to achieve the desired goal of having a baby, despite a concerted effort. The inability to have a child can directly diminish the person's sense of self-esteem and prompt existential anxiety. The problem may be significantly more difficult if the individual has been highly successful in other areas of life and has not developed the coping skills to deal with the failure of meeting an important goal. Understanding and accepting the loss of control inherent in infertility treatment can challenge long-held beliefs about self-efficacy and competency. The loss or change of important relationships may have also occurred because of the infertility. This includes the intimate partner relationship but also relationships with family, friends, coworkers, and others. If the patient is married or partnered, the impact of the infertility on the relationship can be profound. The infertile partner may feel responsible and guilty that they were not able to have a child with their partner. Additionally, the couple's communication and resilience may be strained by the demands of the treatment; and although some couples note that they ‘‘never knew we were this strong’’ and emerge at the end of treatment with a newfound confidence in the durability of their relationship, most note that the treatment was taxing to their relationship. In terms of relationships with friends and family, the infertile woman may have withdrawn from relationships with family members or friends who are pregnant or who have recently given birth. Infertile individuals may avoid social gatherings during which pregnancy and childrearing are discussed. Fear of letting down one's parents or other family members by not having a child compounds the pressure and loss on the couple. Re-establishing these relationships or letting them go is an additional topic addressed in end-of-treatment counseling. Another loss is the loss of feeling healthy and physically well. Particularly for women, the pain and discomfort of procedures, side effects of medications, and being in the patient role for months at a time can undermine a woman's sense of physical health. Additionally and meaningfully, coming to terms with the knowledge that her reproductive system did not do what she wanted it to do takes time and considerable reflection. A further potential loss is the loss of financial security. Given that only a minority of states mandate coverage for some type of infertility treatment, most couples spend thousands of dollars funding their treatment, and others may VOL. - NO. - / - 2015

assume significant debt to finance their infertility treatment. A related concern to financial stability is the concern about continued employment. Frequent absences from work can leave individuals feeling vulnerable to job loss or loss of status at work. Disclosure to employers about the nature of the time away from work can in turn prompt women to worry about loss of possible promotion or advancement at work. Nondisclosure of the reason for the work absences can be equally stressful. Reviewing these concerns and discussing plans for financial and career goals are also topics that are discussed at the end-of-treatment counseling. Last, and most significantly, the patient mourns the loss of the imagined or dreamed-of child. Women and men often have well-defined images of the child they want to have. They discuss characteristics of their partner that they wanted the child to have. They discuss activities that they would do with the child and values and beliefs they would teach the child as an extension of themselves. Using the grief and loss model these losses can be identified, worked through, and resolved, to allow the couple to move on to new life goals (11). In working through these losses and discussing how the patient or couple coped, strengths and new selfperceptions are identified. Acceptance of the situation and development of new goals emerge as the patient or couple begins to identify other activities they value and want to pursue. This can include developing new relationships with children in the family or working with children via community organizations. Others consider volunteering to causes or organizations that they value to find meaning in their lives and contribute to the lives of others; or some couples define new goals for themselves around work or leisure activities that they enjoy. Imagining and planning these next steps is an important goal in the end-of-treatment counseling process (12). In summary, the end of treatment is difficult, whether initiated by the treatment team or by the patient. The MHP can provide end-of-treatment counseling to help the patient examine the psychosocial dimensions of the infertility experience in a neutral and empathic setting. Patients can explore other paths to parenthood or begin the adjustment to childfree living. As they come to terms with the end of treatment, the patient can grieve the losses inherent in the infertility experience and develop a plan to focus on alternative life goals. Like other forms of counseling, end-of-treatment counseling can facilitate the patient's well-being and longterm adjustment.

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handbook for clinicians. 2nd ed. New York: Cambridge University Press; 2006:117–28. Burns LH. Exit counseling. Int Congress Series 2004;1266:264–9. Daniluk J. Strategies for counseling infertile couples. J Counseling Dev 1991; 69:317–20. Clapp D. Helping patients know when ‘‘enough is enough’’. Sexuality Reprod Menopause 2004;2:159–62. Rauprich O, Berns E, Vollman J. Information provision and decision-making in assisted reproduction treatment: results from a survey in Germany. Hum Reprod 2011;26:2382–91.

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VOL. - NO. - / - 2015

When treatment appears futile: the role of the mental health professional and end-of-treatment counseling.

The end of treatment, whether initiated by the medical team or by the patient, represents a difficult transition for the patient. The mental health pr...
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