- Email: [email protected]
Breast Cancer Survivors and Fertility Preservation: Ethical and Religious Considerations
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Seminars in Oncology Nursing, Vol 25, No 4 (November), 2009: pp 278-283
BREAST CANCER SURVIVORS AND FERTILITY PRESERVATION: ETHICAL AND RELIGIOUS CONSIDERATIONS ANGELA JUKKALA OBJECTIVES: To review religious and ethical considerations for health care professionals when discussing fertility preservation with young survivors. DATA SOURCES: Published research reports and articles, published guidelines, and web sites.
CONCLUSION: Although advances in assisted reproductive technology have increased fertility preservation options, not all treatments are acceptable or available for all young survivors.
IMPLICATIONS FOR NURSING PRACTICE: The ongoing provision of information from health care professionals allows young survivors to make high-quality decisions about fertility across the survivorship continuum. Knowledge of the influence that religious beliefs and economics have on decisions help nurses to better understand and support patients during this difficult time.
KEY WORDS: Breast cancer, ethics, religion, in vitro fertilization.
B
reast cancer accounts for one third of malignancies in women of reproductive age,1 with an estimated 240,000 women of child-bearing age also being young breast cancer survivors.2 Although earlier detec-
Angela Jukkala, PhD, RN: Assistant Professor, University of Alabama at Birmingham, Birmingham, AL. Address correspondence to Angela Jukkala, PhD, RN, University of Alabama at Birmingham, School of Nursing, NB 312, 1530 3rd Ave South, Birmingham, AL 35294. e-mail: [email protected] Ó 2009 Elsevier Inc. All rights reserved. 0749-2081/09/2504-$32.00/0. doi:10.1016/j.soncn.2009.08.005
tion and improved treatment have greatly increased the number of long-term survivors,3 life-saving treatments often profoundly affect fertility.4 Regardless of the extent of their disease, the majority of young women diagnosed with breast cancer have concerns about the effect of treatment on their fertility.5,6 Faced with a potentially lifethreatening cancer diagnosis, the simultaneous threat to fertility likely creates an unprecedented personal crisis for these young survivors.7 Within the general population, infertility is often emotionally overwhelming8; in fact, the inability to conceive a child (if desired) has been identified as a serious disability or handicap that interferes with the person’s ability to lead a satisfying
ETHICAL AND RELIGIOUS CONSIDERATIONS
life.9,10 Infertility and interventions to overcome it have been recorded throughout history. In Rome, the Goddess Diana was thought to give fertility; within the Aztec culture, the goddess Cihuacoatl was thought to bestow fertility and strong babies. Within the Old Testament (King James Version), Sarah, Rachel, and Hannah all prayed to God to remove the stigma of barrenness from them. In the book of Genesis, Sarah asked Abraham to take her hand maiden Hagar so that ‘‘perhaps I can build a family through her’’ (Chapter 16:2). Medical advances in the treatment of breast cancer and assisted reproductive technology (ART) offer young survivors the fertility-preservation options that just several years ago were not possible. Unfortunately, many young survivors fail to receive the information or support needed to engage in high-quality decision-making about preserving their fertility.11 Health care professionals have a legal and ethical responsibility to ensure that patients have access to and understand health care information needed to make decisions regarding treatment options.12 Preference-sensitive health decisions are those that depend not only on scientific evidence and professional knowledge, but on the patient’s preference for her future as well.13 High-quality preference-sensitive health decisions (such as those for fertility preservation) are those made by informed patients, that reflect their personal beliefs and values, and that can be acted upon.14
FERTILITY PRESERVATION Recent advances in ART have greatly increased the number of viable options for fertility preservation. Embryo cryopreservation, oocyte cryopreservation, and ovarian tissue cryopreservation and transplantation offer these young women hope for bearing a biologic child in the future. The most effective method to preserve fertility is to undergo a cycle of in-vitro fertilization (IVF) and create embryos for later use.7,15,16 However, a delay in treatment is not possible for all women. For these young survivors, the use of donor eggs and/or a gestational surrogate may be the best option. For others, adoption may be the only viable option. However, not all options are accessible or appropriate for all young women because of financial barriers or cultural and/or religious beliefs. This article will present ethical and religious considerations when discussing IVF, donor
279
oocytes, surrogacy, and adoption with young survivors.
ETHICS, BREAST CANCER, AND ART Ethical concerns around the use of ART came to the forefront over 30 years ago following the first live birth from IVF, and the debate continues today as members of health care and society further define what is and is not acceptable.17 The ethical dilemmas are numerous and include concerns about the use of ART in the present (eg, increased incidence of multiple births) and in the future (eg, eugenics and cloning). Ethical dilemmas involving the use of ART with young cancer survivors are numerous as well, given that the long-term impact of ART treatment on the health status of young survivors and their children is largely unknown.18 The principles commonly used to examine ethical dilemmas are the principles of autonomy, beneficence, nonmaleficence, and justice.19 The principle of autonomy holds that people have the right to determine their own action based on personal values and beliefs. Young women have the right to have reproductive control, whether in reference to contraception or procreation20; a diagnosis of cancer does not strip them of this right. An example of an ethical dilemma is the case of a childless young woman diagnosed with Stage II breast cancer desiring an additional cycle of IVF following a failed cycle (no embryos resulted from first cycle). At this time, the delay of treatment and hormonal stimulation for one IVF cycle is not thought to impact long-term cancer outcomes18; however, the effect of repeated IVF cycles is unknown. The principle of autonomy would dictate that the woman has the right to pursue additional IVF cycles to maximize the possibility of bearing a biologic child in the future. However, this decision could create conflict for health care professionals. The patient’s right to autonomy comes into conflict with other ethical principles, such as the principle of nonmaleficence. This principle refers to the health care provider’s obligation to ‘do no harm.’21 The ethical dilemma created pertains to the possibility that providing the young woman with additional cycles of ART can expose her to additional harm; either from the high levels of hormones required for each IVF cycle and/or further delaying treatment for her cancer. Thus, the health care provider’s
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obligation to respect the woman’s right to an autonomous decision regarding her future ability to bear a biologic child comes into conflict with their obligation to do no harm. The principle of beneficence involves the obligation to protect patients from harm, while at the same time promoting and encouraging the greater good. In the case of this young woman, what is the health care provider’s primary obligation? Is it to protect her from the harm of infertility? Or is the obligation to maximize her chances of survival from breast cancer (ie, protect her from the harm of cancer)? Which action will have the most benefit for the young woman? The answer to this question may be unclear as it is preference-sensitive. Justice involves fairness and equity, specifically with regard to sharing the burden and benefits of a resource within a given community. This principle would likely not be addressed on the individual level, but rather as health policy issue. Within the United States, infertility has been defined by most insurers as a socially constructed need and is therefore not covered by health insurance in most states. With the average IVF cycle costing $12,400,22 this cost is well above what the average American family with an annual income of $50,23323 can afford. It is not surprising that the United States has the lowest IVF treatment ratio in the developed world.24 For young survivors, this expense would be incurred at the same time the family is facing a catastrophic illness. Unfortunately, the majority of young survivors likely do not have access to the most effective method of fertility preservation (IVF) because of financial barriers. Health care providers have an ethical obligation to advocate for health policy changes to ensure that young survivors have access to these vital fertility-preservation services. Although very difficult, a final ethical consideration that must be addressed is what to do with remaining cryo-preserved embryos in the event the young woman does not survive.25 The Ethics Committee of the American Society for Reproductive Medicine7 has recommended that posthumous reproduction only occur when the deceased has specifically provided an advanced directive, highlighting the importance of this difficult decision. Health care professionals working with cancer survivors to preserve fertility must provide accurate, complete, and current information as part of the informed consent process26 to ensure that young women fully understand the risks and benefits of ART and embryo cryopreservation,
enabling them to make treatment decisions that reflect their personal beliefs and values.
RELIGIOUS CONSIDERATIONS Decisions about fertility preservation, infertility, and adoption are highly personal and can be greatly influenced by religious beliefs. It is essential that health care professionals have a basic understanding of how personal religious practices may impact the patient’s views of fertility, while at the same time recognizing that great diversity regarding beliefs and practices often exists between individuals within a given faith (see Table 1). Young survivors should be provided with comprehensive information about all possible interventions to allow them to make a thoughtful decision based on personal beliefs. Published information describing the views of the three dominant monotheistic religions in the United States (ie, Christianity, Islam, and Judaism) toward IVF, donor oocyte, surrogacy, and adoption will be presented. Christianity Within Christian churches, attitudes toward ART can vary widely. The Roman Catholic Church does not accept the practice of any form of ART because of the belief that procreation should only occur between husband and wife; the physician can only help the couple to conceive naturally.27 Christian Science also opposes IVF because of the medication and procedures required.28 However, most Protestant groups have liberal attitudes toward ART, provided all gametes are from the married couple21 and there is no embryo wastage.29 The use of donor oocytes and surrogates is not as readily accepted.30 Islam Within the Muslim community, the use of ART for married young cancer survivors is acceptable provided gametes originate with the husband and wife. The use of assisted reproduction technology with donor eggs or embryos is not widely accepted.31 Concerns with the use of donor eggs and/or embryos are related to adultery (occurs when the husband’s sperm is used to fertilize donor eggs), incest (can potentially occur among the offspring of unknown donors), and lack of biological descent (confusion in regard to kinship,
ETHICAL AND RELIGIOUS CONSIDERATIONS
281
TABLE 1. Key Religious Considerations Religion/Faith Christianity
Islam
Judaism
ART
Donor Oocytes
Surrogacy
Acceptable for most Varies greatly based upon Varies greatly based upon provided there is no personal religious personal religious embryo wastage and practice. practice. both gametes originate with a married couple. Catholics and Christian Scientist may not view ART as an acceptable treatment option. Acceptable for most Not widely accepted Not widely accepted. provided both gametes originate within a married couple. Most view this as an Acceptable, but there are Acceptable, but there are acceptable treatment specific considerations specific considerations options. when donor oocytes are when a surrogate or used. gestational carriers is used.
Adoption Most view adoption as a viable option.
Most view adoption as a viable option, but not as practiced in western cultures. Most view adoption as a viable option.
Personal religious beliefs and practices within a given faith may vary greatly; all women should be provided with comprehensive information describing all treatment options.
descent, and inheritance).32 Surrogacy is generally not acceptable because of the possibility for confusion of lineage and adultery (if the fetus is conceived through artificial insemination).29 Judaism Judaism permits the use of all techniques of reproductive technology, provided both the sperm and the oocyte originate from husband and wife.21 The use of a surrogate gestational carrier may be problematic as Jewish law would dictate that the child belongs to the father who gave the sperm and the woman who gave birth (the surrogate mother). However, when donor oocytes are used, the child belongs to the woman who gave birth.29 Alternatives to Biologic Parenting Adoption Just as young survivors lack access to quality health information about fertility preservation, information about adoption is not readily accessible either.33 Anecdotal evidence suggests that both adoption agencies and birth mothers have reservations about placing a child with a cancer survivor34,35; however, empirical evidence is lacking.36 Fortunately, many cancer survivors have
successfully completed domestic and/or international adoptions. Although adoption is viewed positively within the United States,37 how adoption occurs and what adoption means may vary based on religious beliefs. Within the Muslim community, adoption of a child as is practiced in Western cultures is not acceptable.38 While caring for and supporting an orphan is considered a great act of charity and encouraged, the child retains the birth lineage of their biologic father,39 not that of the adoptive family. A child only takes on the lineage of the adoptive family if the ‘‘fostering’’ mother breastfeeds the infant.33 Within the Jewish faith, while adoption is acceptable, it does raise numerous halakhic (Jewish Law) as well as practical questions.40 The importance of bloodline within the Jewish community and the societal implications of adopted children within the Jewish community are areas of concern for some. Adoption is acceptable to most, if not all, Christian religions. As with infertility treatments, the cost of adoption can be well beyond what many women and their families can afford. Fees for a domestic adoption (for a newborn) range from $5,000 to $30,000; international adoption ranges between $20,000 and $40,000.41 Adoption of older children or special needs children may cost much less; however, young cancer survivors may not have
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the resources to deal with the additional physical or emotional needs of these children.34 External financial resources (ex. insurance) to assist with adoption fees are generally not available. Involuntary Childlessness Sadly, despite all attempts to conceive or adopt, some young survivors will experience involuntary childlessness. Many will not have access to the social support needed to deal with involuntary childlessness; mental health problems such as anxiety and depression are common.42 This highlights the importance of supporting young women across the survivorship continuum. Young survivors who fail to reach their childbearing goals should be referred to appropriate resources for support and counseling. Childfree Living Other young survivors may choose to remain childless. They may come to this decision early in their experience with infertility or may come to this decision only after years of working with infertility. Although often a very difficult process, they make peace with living their life without children. Rather than focusing financial and emotional resources on having or adopting a child, they choose to accept living childfree and direct energy toward people and activities that add meaning to her life.43 This emotional resolution often leads to personal expansion as they fill their lives with work, hobbies, artistic endeavors, political causes, and also with children through family or community ties (ex. nieces, nephews, volunteering to be a Big Sister).43
NURSING IMPLICATIONS Underlying the ethical principle to ‘‘do no harm’’ is the trusting relationship that develops between health care professionals and young survivors.44 Fulfilling this obligation requires health care professionals to provide comprehensive health
information that will support young survivors to make difficult decisions about fertility. Whether the diagnosis of cancer interrupted plans to have a child or plans to have more children, the threat to fertility can be devastating. Although all women of childbearing age diagnosed with breast cancer should be referred to a reproductive endocrinologist, patient education of possible fertility preservation options must begin immediately.45 While a high level of expertise in fertility and reproduction is an unreasonable expectation for oncology nurses, the ability to provide basic information and refer to appropriate sources for additional information is necessary. Knowledge of the influence religious beliefs may have on fertility-related health decisions will help nurses to better support young survivors as they make these very difficult decisions. Appendix 1, elsewhere in this issue, provides a list of internet resources for both health care professionals and cancer survivors. Oncology and reproductive health care professionals can also disseminate accurate and up-to-date knowledge about fertility preservation to other health care professionals in other practice areas through local and regional joint presentations.
RESEARCH IMPLICATIONS Life-changing decisions about fertility preservation must be made during the very difficult time immediately following diagnosis. However, very little is known about the quality of these decisions. How knowledgeable are young women of cancer treatment and fertility preservation at the time they make their decision? Does the decision they make reflect their personal beliefs and values? Are women able to act upon the decision they make? How many women are unable to engage in fertility preservation to the extent they would like to because of financial barriers? Research to answer these important questions is necessary to deliver high-quality care and influence health care policy.
REFERENCES 1. Sonmezer M, Oktay K. Fertility preservation in young women undergoing breast cancer therapy. Oncologist 2006;11:422-434. 2. American Cancer Society Breast cancer facts and figures 2007-2008. Atlanta, GA: American Cancer Society. Available
at: http://www.cancer.org/downloads/stt/bcff-final.pdf. Accessed Apr 16, 2009. 3. McCarthy NJ. Care of the breast cancer survivor: increased survivor rates present a new set of challenges. Postgrad Med 2004;116:587-593.
ETHICAL AND RELIGIOUS CONSIDERATIONS
4. Dunn L, Fox KR. Techniques for fertility preservation in patients with breast cancer. Curr Opin Obstet Gynecol 2009;21:68-73. 5. Partridge AH, Gelber S, Peppercorn J, et al. Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol 2004;22:4174-4183. 6. Schover LR. Motivation for parenthood after cancer: a review. J Natl Cancer Inst Monogr 2005;34:2-5. 7. Ethics Committee of the American Society for Reproductive Medicine. Fertility preservation and reproduction in cancer patients. Fertil Steril 2005;83:1622-1628. 8. Hammer-Burns L, Covington SN. Psychology of infertility. In: Covington SN, Hammer-Burns L, eds. Infertility counseling: a comprehensive handbook for clinicians. New York, NY: Cambridge University Press; 2006: pp. 1-19. 9. World Health Organization. Current practices and controversies in assisted reproduction. Available at: www.who.int/ reproductive-health/infertility/report.pdf (accessed Apr 18, 2009). 10. Pennings G, de Wert G, Shenfield F, et al. ESHRE Task Force on Ethics and Law 14: equity of access to assisted reproductive technology. Hum Reprod 2008;23:772-774. 11. Meneses K, McNees P, Azuero A, et al. Development of the Fertility and Cancer Project: an internet approach to help young cancer survivors. Oncol Nurs Forum [In press]. 12. Schachter M, Fin JJ. Informed consent revisited: a doctrine in the service of cancer care. Oncologist 2008;13:1109-1113. 13. Sepucha K, Mulley AG. A perspective on the patient’s role in treatment decisions. Med Care Res Rev 2009;66:53S74S. 14. Collins ED, Moore CP, Clay KF, et al. Can women with early-stage breast cancer make an informed decision for mastectomy? J Clin Oncol 2008;27:519-525. 15. Jeruss JS, Woodruff TK. Preservation of fertility in patients with cancer. N Engl J Med 2009;360:902-911. 16. Maltaris T, Weigel M, Mueller AL, et al. Cancer and fertility preservation: fertility preservation in breast cancer patients. Breast Cancer Res 2009;10:206. 17. Rochman B. The ethics of octuplets. As fertility treatments improve, should doctors limit the number of babies a woman can have? Time Magazine 2009;173:43-44. 18. Azim AA, Costantini M, Oktay K. Safety of fertility preservation by ovarian stimulation with letrozole and gonadotropins in patients with breast cancer: a prospective controlled study. J Clin Oncol 2008;26:2630-2635. 19. Beauchamp TL, Childress JF. Principles of biomedical ethics. Ed 4. New York, NY: Oxford University Press; 1994. 20. Schenker JG, Eisenberg VH. Ethical issues relating to reproduction control and women’s health. Int J Gynecol Obstet 1997;58:167-176. 21. Hynie M, Hammer-Burns L. Cross-cultural issues in infertility counseling. In: Covington SN, Hammer-Burns L, eds. Infertility counseling: a comprehensive handbook for clinicians. New York, NY: Cambridge University Press; 2006: pp. 61-82. 22. Baby Center. Fertility treatment: in-vitro fertilization. Available at: http://www.babycenter.com/0_fertility-treatmentin-vitro-fertilization-ivf_4094.bc (accessed Apr 13, 2009). 23. DeNavas-Walt C, Proctor BD, Smith JC. Income, poverty, and health insurance coverage in the United States: 2007. Washington, DC: US Census Bureau, Current Population Reports, P60-235. US Government Printing Office; 2008. 24. Hammoud AO, Gibson M, Stanford J, et al. In vitro fertilization and utilization in the United States: a study of demo-
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graphic, social, and economic factors. Fertil Steril 2009;91:1630-1635. 25. Hickey M, Peate M, Saunders CM, et al. Breast cancer in young women and its impact on reproductive function. Hum Reprod Update 2009;15:323-339. 26. Crockin SL. Legal issues related to parenthood after cancer. J Natl Cancer Inst Monogr 2005;34:111-113. 27. Shea JB. The moral status of in vitro fertilization (IVF). Biology and method. Available at: www.catholicinsight.com/ online/church/vatican/article_475.shtml (accessed Apr 18, 2009). 28. Schenker JG. Legitimizing surrogacy in Israel: religious perspectives. In: Cook R, Sclatr SD, Kaganas F, eds. Surrogate motherhood. Portland, OR: Hart Publishing; 2004: pp. 243-260. 29. Schenker JG. Assisted reproductive practices: religious perspectives. Reprod Biomed Online 2005;10:310-319. 30. McColley D. A Biblical response to baby-making: surrogacy, artificial insemination, in vitro fertilization and embryo transfer. J Biblical Ethics Med 2003;5:1-5. 31. Serour GL, Dickens BM. Assistant reproduction developments in the Islamic world. Int Federation Gynecol Obstet 2001;74:187-193. 32. Larijani B, Zahedi F. Ethical and religious aspects of gamete and embryo donation and legislation in Iran. J Religious Health 2007;46:399-408. 33. Zebrack B. Information and service needs for young adult cancer survivors. Support Care Cancer 2008;16:1353-1360. 34. Cancerwise. Q & A: What to know about fertility and cancer. Available at: http://www.cancerwise.org/july_ 2004/display.cfm?id¼cdad7a42–34f9-4e19-99fee686826107c4 &method¼displayfull&color¼green (accessed Apr 13, 2009). 35. Rosen A. Third-party reproduction and adoption in cancer patients. J Natl Cancer Inst Monogr 2005;34:91-93. 36. Schover LR. Psychosocial aspects of infertility and decisions about reproduction in young cancer survivors: a review. Med Pediatr Oncol 1999;33:53-59. 37. Adoption Institute. National adoption attitudes survey. Available at: http://www.adoptioninstitute.org/survey/survey_ summary.html (accessed Apr 13, 2009). 38. Inhorn MC. ‘‘He won’t be my son’’ Middle Eastern Muslim men’s discourses of adoption and gamete donation. Med Anthropol Quarterly 2006;20:94-120. 39. Albar MA. Counseling about genetic disease: an Islamic perspective. East Mediterr Health J 1999;5:1129-1133. 40. Jewish adoption. Adoption as a Jewish option. Available at: http://jewish.adoption.com/faith-based/adoption-as-a-jewishoption.html (accessed Apr 13, 2009). 41. The Adoption Guide. What kind of adoption is right for you? Available at: http://www.theadoptionguide.com/tools/ planner/matrix (accessed April 18, 2009). 42. Lechner L, Bolman C, van Dalen A. Definite involuntary childlessness: associations between coping, social support and psychological distress. Hum Reprod 2007;22:288-294. 43. Resolve. Myths about the childfree alternative. Available at: http://www.resolve.org/site/PageServer?pagename¼lrn_ chfr_maf (accessed Apr 13, 2009). 44. Peters K, Jackson D, Rudge T. ‘‘It just alienated us’’: a case study to explore the impact of assisted reproductive technology on family relationships. Adv Nurs Sci 2007;30:E25-E36. 45. Canada AL, Schover LR. Research promoting better patient education on reproductive health after cancer. J Natl Cancer Inst Monogr 2005;34:98-100.
Seminars in Oncology Nursing, Vol 25, No 4 (November), 2009: pp 278-283
BREAST CANCER SURVIVORS AND FERTILITY PRESERVATION: ETHICAL AND RELIGIOUS CONSIDERATIONS ANGELA JUKKALA OBJECTIVES: To review religious and ethical considerations for health care professionals when discussing fertility preservation with young survivors. DATA SOURCES: Published research reports and articles, published guidelines, and web sites.
CONCLUSION: Although advances in assisted reproductive technology have increased fertility preservation options, not all treatments are acceptable or available for all young survivors.
IMPLICATIONS FOR NURSING PRACTICE: The ongoing provision of information from health care professionals allows young survivors to make high-quality decisions about fertility across the survivorship continuum. Knowledge of the influence that religious beliefs and economics have on decisions help nurses to better understand and support patients during this difficult time.
KEY WORDS: Breast cancer, ethics, religion, in vitro fertilization.
B
reast cancer accounts for one third of malignancies in women of reproductive age,1 with an estimated 240,000 women of child-bearing age also being young breast cancer survivors.2 Although earlier detec-
Angela Jukkala, PhD, RN: Assistant Professor, University of Alabama at Birmingham, Birmingham, AL. Address correspondence to Angela Jukkala, PhD, RN, University of Alabama at Birmingham, School of Nursing, NB 312, 1530 3rd Ave South, Birmingham, AL 35294. e-mail: [email protected] Ó 2009 Elsevier Inc. All rights reserved. 0749-2081/09/2504-$32.00/0. doi:10.1016/j.soncn.2009.08.005
tion and improved treatment have greatly increased the number of long-term survivors,3 life-saving treatments often profoundly affect fertility.4 Regardless of the extent of their disease, the majority of young women diagnosed with breast cancer have concerns about the effect of treatment on their fertility.5,6 Faced with a potentially lifethreatening cancer diagnosis, the simultaneous threat to fertility likely creates an unprecedented personal crisis for these young survivors.7 Within the general population, infertility is often emotionally overwhelming8; in fact, the inability to conceive a child (if desired) has been identified as a serious disability or handicap that interferes with the person’s ability to lead a satisfying
ETHICAL AND RELIGIOUS CONSIDERATIONS
life.9,10 Infertility and interventions to overcome it have been recorded throughout history. In Rome, the Goddess Diana was thought to give fertility; within the Aztec culture, the goddess Cihuacoatl was thought to bestow fertility and strong babies. Within the Old Testament (King James Version), Sarah, Rachel, and Hannah all prayed to God to remove the stigma of barrenness from them. In the book of Genesis, Sarah asked Abraham to take her hand maiden Hagar so that ‘‘perhaps I can build a family through her’’ (Chapter 16:2). Medical advances in the treatment of breast cancer and assisted reproductive technology (ART) offer young survivors the fertility-preservation options that just several years ago were not possible. Unfortunately, many young survivors fail to receive the information or support needed to engage in high-quality decision-making about preserving their fertility.11 Health care professionals have a legal and ethical responsibility to ensure that patients have access to and understand health care information needed to make decisions regarding treatment options.12 Preference-sensitive health decisions are those that depend not only on scientific evidence and professional knowledge, but on the patient’s preference for her future as well.13 High-quality preference-sensitive health decisions (such as those for fertility preservation) are those made by informed patients, that reflect their personal beliefs and values, and that can be acted upon.14
FERTILITY PRESERVATION Recent advances in ART have greatly increased the number of viable options for fertility preservation. Embryo cryopreservation, oocyte cryopreservation, and ovarian tissue cryopreservation and transplantation offer these young women hope for bearing a biologic child in the future. The most effective method to preserve fertility is to undergo a cycle of in-vitro fertilization (IVF) and create embryos for later use.7,15,16 However, a delay in treatment is not possible for all women. For these young survivors, the use of donor eggs and/or a gestational surrogate may be the best option. For others, adoption may be the only viable option. However, not all options are accessible or appropriate for all young women because of financial barriers or cultural and/or religious beliefs. This article will present ethical and religious considerations when discussing IVF, donor
279
oocytes, surrogacy, and adoption with young survivors.
ETHICS, BREAST CANCER, AND ART Ethical concerns around the use of ART came to the forefront over 30 years ago following the first live birth from IVF, and the debate continues today as members of health care and society further define what is and is not acceptable.17 The ethical dilemmas are numerous and include concerns about the use of ART in the present (eg, increased incidence of multiple births) and in the future (eg, eugenics and cloning). Ethical dilemmas involving the use of ART with young cancer survivors are numerous as well, given that the long-term impact of ART treatment on the health status of young survivors and their children is largely unknown.18 The principles commonly used to examine ethical dilemmas are the principles of autonomy, beneficence, nonmaleficence, and justice.19 The principle of autonomy holds that people have the right to determine their own action based on personal values and beliefs. Young women have the right to have reproductive control, whether in reference to contraception or procreation20; a diagnosis of cancer does not strip them of this right. An example of an ethical dilemma is the case of a childless young woman diagnosed with Stage II breast cancer desiring an additional cycle of IVF following a failed cycle (no embryos resulted from first cycle). At this time, the delay of treatment and hormonal stimulation for one IVF cycle is not thought to impact long-term cancer outcomes18; however, the effect of repeated IVF cycles is unknown. The principle of autonomy would dictate that the woman has the right to pursue additional IVF cycles to maximize the possibility of bearing a biologic child in the future. However, this decision could create conflict for health care professionals. The patient’s right to autonomy comes into conflict with other ethical principles, such as the principle of nonmaleficence. This principle refers to the health care provider’s obligation to ‘do no harm.’21 The ethical dilemma created pertains to the possibility that providing the young woman with additional cycles of ART can expose her to additional harm; either from the high levels of hormones required for each IVF cycle and/or further delaying treatment for her cancer. Thus, the health care provider’s
280
A. JUKKALA
obligation to respect the woman’s right to an autonomous decision regarding her future ability to bear a biologic child comes into conflict with their obligation to do no harm. The principle of beneficence involves the obligation to protect patients from harm, while at the same time promoting and encouraging the greater good. In the case of this young woman, what is the health care provider’s primary obligation? Is it to protect her from the harm of infertility? Or is the obligation to maximize her chances of survival from breast cancer (ie, protect her from the harm of cancer)? Which action will have the most benefit for the young woman? The answer to this question may be unclear as it is preference-sensitive. Justice involves fairness and equity, specifically with regard to sharing the burden and benefits of a resource within a given community. This principle would likely not be addressed on the individual level, but rather as health policy issue. Within the United States, infertility has been defined by most insurers as a socially constructed need and is therefore not covered by health insurance in most states. With the average IVF cycle costing $12,400,22 this cost is well above what the average American family with an annual income of $50,23323 can afford. It is not surprising that the United States has the lowest IVF treatment ratio in the developed world.24 For young survivors, this expense would be incurred at the same time the family is facing a catastrophic illness. Unfortunately, the majority of young survivors likely do not have access to the most effective method of fertility preservation (IVF) because of financial barriers. Health care providers have an ethical obligation to advocate for health policy changes to ensure that young survivors have access to these vital fertility-preservation services. Although very difficult, a final ethical consideration that must be addressed is what to do with remaining cryo-preserved embryos in the event the young woman does not survive.25 The Ethics Committee of the American Society for Reproductive Medicine7 has recommended that posthumous reproduction only occur when the deceased has specifically provided an advanced directive, highlighting the importance of this difficult decision. Health care professionals working with cancer survivors to preserve fertility must provide accurate, complete, and current information as part of the informed consent process26 to ensure that young women fully understand the risks and benefits of ART and embryo cryopreservation,
enabling them to make treatment decisions that reflect their personal beliefs and values.
RELIGIOUS CONSIDERATIONS Decisions about fertility preservation, infertility, and adoption are highly personal and can be greatly influenced by religious beliefs. It is essential that health care professionals have a basic understanding of how personal religious practices may impact the patient’s views of fertility, while at the same time recognizing that great diversity regarding beliefs and practices often exists between individuals within a given faith (see Table 1). Young survivors should be provided with comprehensive information about all possible interventions to allow them to make a thoughtful decision based on personal beliefs. Published information describing the views of the three dominant monotheistic religions in the United States (ie, Christianity, Islam, and Judaism) toward IVF, donor oocyte, surrogacy, and adoption will be presented. Christianity Within Christian churches, attitudes toward ART can vary widely. The Roman Catholic Church does not accept the practice of any form of ART because of the belief that procreation should only occur between husband and wife; the physician can only help the couple to conceive naturally.27 Christian Science also opposes IVF because of the medication and procedures required.28 However, most Protestant groups have liberal attitudes toward ART, provided all gametes are from the married couple21 and there is no embryo wastage.29 The use of donor oocytes and surrogates is not as readily accepted.30 Islam Within the Muslim community, the use of ART for married young cancer survivors is acceptable provided gametes originate with the husband and wife. The use of assisted reproduction technology with donor eggs or embryos is not widely accepted.31 Concerns with the use of donor eggs and/or embryos are related to adultery (occurs when the husband’s sperm is used to fertilize donor eggs), incest (can potentially occur among the offspring of unknown donors), and lack of biological descent (confusion in regard to kinship,
ETHICAL AND RELIGIOUS CONSIDERATIONS
281
TABLE 1. Key Religious Considerations Religion/Faith Christianity
Islam
Judaism
ART
Donor Oocytes
Surrogacy
Acceptable for most Varies greatly based upon Varies greatly based upon provided there is no personal religious personal religious embryo wastage and practice. practice. both gametes originate with a married couple. Catholics and Christian Scientist may not view ART as an acceptable treatment option. Acceptable for most Not widely accepted Not widely accepted. provided both gametes originate within a married couple. Most view this as an Acceptable, but there are Acceptable, but there are acceptable treatment specific considerations specific considerations options. when donor oocytes are when a surrogate or used. gestational carriers is used.
Adoption Most view adoption as a viable option.
Most view adoption as a viable option, but not as practiced in western cultures. Most view adoption as a viable option.
Personal religious beliefs and practices within a given faith may vary greatly; all women should be provided with comprehensive information describing all treatment options.
descent, and inheritance).32 Surrogacy is generally not acceptable because of the possibility for confusion of lineage and adultery (if the fetus is conceived through artificial insemination).29 Judaism Judaism permits the use of all techniques of reproductive technology, provided both the sperm and the oocyte originate from husband and wife.21 The use of a surrogate gestational carrier may be problematic as Jewish law would dictate that the child belongs to the father who gave the sperm and the woman who gave birth (the surrogate mother). However, when donor oocytes are used, the child belongs to the woman who gave birth.29 Alternatives to Biologic Parenting Adoption Just as young survivors lack access to quality health information about fertility preservation, information about adoption is not readily accessible either.33 Anecdotal evidence suggests that both adoption agencies and birth mothers have reservations about placing a child with a cancer survivor34,35; however, empirical evidence is lacking.36 Fortunately, many cancer survivors have
successfully completed domestic and/or international adoptions. Although adoption is viewed positively within the United States,37 how adoption occurs and what adoption means may vary based on religious beliefs. Within the Muslim community, adoption of a child as is practiced in Western cultures is not acceptable.38 While caring for and supporting an orphan is considered a great act of charity and encouraged, the child retains the birth lineage of their biologic father,39 not that of the adoptive family. A child only takes on the lineage of the adoptive family if the ‘‘fostering’’ mother breastfeeds the infant.33 Within the Jewish faith, while adoption is acceptable, it does raise numerous halakhic (Jewish Law) as well as practical questions.40 The importance of bloodline within the Jewish community and the societal implications of adopted children within the Jewish community are areas of concern for some. Adoption is acceptable to most, if not all, Christian religions. As with infertility treatments, the cost of adoption can be well beyond what many women and their families can afford. Fees for a domestic adoption (for a newborn) range from $5,000 to $30,000; international adoption ranges between $20,000 and $40,000.41 Adoption of older children or special needs children may cost much less; however, young cancer survivors may not have
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the resources to deal with the additional physical or emotional needs of these children.34 External financial resources (ex. insurance) to assist with adoption fees are generally not available. Involuntary Childlessness Sadly, despite all attempts to conceive or adopt, some young survivors will experience involuntary childlessness. Many will not have access to the social support needed to deal with involuntary childlessness; mental health problems such as anxiety and depression are common.42 This highlights the importance of supporting young women across the survivorship continuum. Young survivors who fail to reach their childbearing goals should be referred to appropriate resources for support and counseling. Childfree Living Other young survivors may choose to remain childless. They may come to this decision early in their experience with infertility or may come to this decision only after years of working with infertility. Although often a very difficult process, they make peace with living their life without children. Rather than focusing financial and emotional resources on having or adopting a child, they choose to accept living childfree and direct energy toward people and activities that add meaning to her life.43 This emotional resolution often leads to personal expansion as they fill their lives with work, hobbies, artistic endeavors, political causes, and also with children through family or community ties (ex. nieces, nephews, volunteering to be a Big Sister).43
NURSING IMPLICATIONS Underlying the ethical principle to ‘‘do no harm’’ is the trusting relationship that develops between health care professionals and young survivors.44 Fulfilling this obligation requires health care professionals to provide comprehensive health
information that will support young survivors to make difficult decisions about fertility. Whether the diagnosis of cancer interrupted plans to have a child or plans to have more children, the threat to fertility can be devastating. Although all women of childbearing age diagnosed with breast cancer should be referred to a reproductive endocrinologist, patient education of possible fertility preservation options must begin immediately.45 While a high level of expertise in fertility and reproduction is an unreasonable expectation for oncology nurses, the ability to provide basic information and refer to appropriate sources for additional information is necessary. Knowledge of the influence religious beliefs may have on fertility-related health decisions will help nurses to better support young survivors as they make these very difficult decisions. Appendix 1, elsewhere in this issue, provides a list of internet resources for both health care professionals and cancer survivors. Oncology and reproductive health care professionals can also disseminate accurate and up-to-date knowledge about fertility preservation to other health care professionals in other practice areas through local and regional joint presentations.
RESEARCH IMPLICATIONS Life-changing decisions about fertility preservation must be made during the very difficult time immediately following diagnosis. However, very little is known about the quality of these decisions. How knowledgeable are young women of cancer treatment and fertility preservation at the time they make their decision? Does the decision they make reflect their personal beliefs and values? Are women able to act upon the decision they make? How many women are unable to engage in fertility preservation to the extent they would like to because of financial barriers? Research to answer these important questions is necessary to deliver high-quality care and influence health care policy.
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