Ethical dilemmas in women's health in under-resourced settings

International Journal of Gynecology and Obstetrics 113 (2011) 25–27 Contents lists available at ScienceDirect International Journal of Gynecology and Obstetrics j o u r n a l h o m e p a g e : w w w. e l s ev i e r. c o m / l o c a t e / i j g o REVIEW ARTICLE Ethical dilemmas in women's health in under-resourced settings Jeffrey P. Wilkinson a,⁎, Anne D. Lyerly a, Gileard Masenga b, Sumera K. Hayat a,c, Malavika Prabhu d a Department of Obstetrics and Gynecology, Duke University Medical Center, Durham, USA Department of Obstetrics and Gynecology, Kilimanjaro Christian Medical Center, Moshi, Tanzania c Department of Community and Family Medicine, Duke University Medical Center, Durham, USA d Stanford University School of Medicine, Stanford, USA b a r t i c l e i n f o Article history: Received 7 August 2010 Received in revised form 25 October 2010 Accepted 16 December 2010 Keywords: Ethics HIV/AIDS Low-resource setting Obstetrics and gynecology Obstetric fistula a b s t r a c t Ethical decision making in women's health presents a series of unique challenges that are exacerbated considerably in under-resourced settings. Severe constraints on both autonomy and resources highlight limitations of principle-based ethics for addressing ethical dilemmas. Other useful ethical "tools" are considered in the context of 2 cases that emphasize the challenges to ethical decision making in underresourced settings. The cases confront traditional notions of patient autonomy, highlight pervasive issues with regard to allocation of resources, and demonstrate the difficulties encountered in the careful application of medical ethics. © 2010 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved. The effective application of medical ethics presents many challenges. Done well, it employs more than a series of formulaic rules or algorithms; rather, it involves values that are often difficult to reconcile and may raise a host of moral tensions. Perhaps nowhere are clinical ethics more challenging than in the provision of women's health care in under-resourced settings. At least 2 specific challenges converge to make ethical decision making in such settings particularly difficult to negotiate. First are complexities particular to women's health, specifically conflicts that can arise in the simultaneous care of a woman and a fetus. Although their interests often align, the actual or apparent divergence in their interests may create dilemmas for clinicians. Such dilemmas are often poorly suited to traditional approaches to ethics, which are premised on a physical demarcation between 2 separate individuals, because woman and fetus are physically and often emotionally intertwined [1]. Moreover, pregnancy and reproductive health often are characterized by the sensitivity of issues, topics, and body parts that are usually kept private, while simultaneously raising issues that are characterized by highly polarized public debate. Second are the challenges particular to providing medical care in under-resourced settings. Extreme poverty, limited access to health care, medical resource limitations, and gender- and class-based constraints on autonomy add complexity to issues that arise in these settings. For instance, a prevailing account of autonomy in ⁎ Corresponding author. Obstetrics and Gynecology, Duke University Medical Center, Durham, Box 3084, Durham, NC 27710, USA. Tel.: +1 919 943 3973; fax: +1 919 660 2376. E-mail address: [email protected] (J.P. Wilkinson). bioethics upholds the importance of “protecting and promoting patients’ ability to make and act upon free, informed decisions resulting from capable and uninfluenced deliberation” [2]. But, as Wolf and others have argued, “people who are oppressed face systemic barriers to their freedom, so the choices they are offered in medical contexts are likely to be severely restricted by the limited choices available to them in their lives generally. It is deceptive to think we are protecting autonomy when we allow people to choose between unhappy alternatives, and the choice is already severely limited” [3]. Similar challenges arise in efforts to understand how to provide care in a way that meets the requirement of justice, defined by fairness in the distribution of benefits and burdens of health care. Not only is it difficult to determine how resources should be distributed when they are severely limited, but it is also difficult for practitioners to know what they owe patients in the context of global disparities in wealth that increasingly affect women and their health. Furthermore, the time available to clinicians for careful application of ethics in these settings is usually limited because of pervasive shortages of healthcare workers and a proportionately larger number of patients. By contrast, some basic assumptions apply to the care of patients in most high-income settings: there are an adequate number of qualified healthcare providers; basic medications and equipment are available; if the patient is in a setting in which care is inadequate, there is usually a means of timely transfer to a facility with necessary resources; patients unable to afford health care often receive some care, especially in emergencies; and there is a system of governance and accountability in place to help promote the interests of both patient and practitioner. The lack of some or all of these features in under-resourced settings creates situations that complicate usual approaches to ethical decision making, whereby the “right” decision 0020-7292/$ – see front matter © 2010 International Federation of Gynecology and Obstetrics. Published by Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ijgo.2010.10.022 26 J.P. Wilkinson et al. / International Journal of Gynecology and Obstetrics 113 (2011) 25–27 for the patient is difficult to make and, all too often for the practitioner, difficult to live with. We present 2 patient vignettes characterizing these ethical tensions and demonstrate how the tools of ethics may still help to guide the way. Through these scenarios, we seek to explore the challenges such settings provide and to describe potential approaches that providers might use when confronted with such dilemmas. These vignettes are inspired by real patient scenarios encountered by the authors in under-resourced settings, yet they are far enough removed or modified in such a way as to assure patient confidentiality. The essential details that highlight the ethical dilemmas remain intact. 1. Case 1 A 27-year-old woman, gravida 1, developed a vesicovaginal fistula after obstructed labor, and presented for care 3 years later noting constant leakage of urine, which caused her to limit her social activities and work. She had a 7-cm fistula involving nearly the entire bladder base and proximal urethra. She underwent surgical correction of the condition and experienced near-total cure of incontinence. Extensive scarring of the vagina left her with only 2 cm of vaginal length after surgery. The patient returned to the hospital 3 months after surgical correction, requesting reversal of the surgery so that she could engage in sexual relations with her husband and avoid the possibility of abandonment. The surgeons who repaired the fistula were unaware that the woman had been having sexual intercourse using her bladder as a vagina. The surgeons’ focus had been to cure what seemed to be her most pressing problem (the unrelenting incontinence) and did not consider other issues in her life. Surgical creation of a neovagina was not considered feasible given the extensive scarring and lack of available equipment and expertise. This case highlights the importance of careful preoperative assessment of both the physical and the psychosocial issues relevant to the patient. Although it is always dangerous to assume what outcomes may matter most to a given patient, such assumptions are less likely to be accurate in the context of language and cultural barriers. Had the patient been informed that surgery to cure incontinence could leave her unable to have sex, she may have opted against the procedure. Informed consent requires the disclosure of information that might reasonably affect a patient's decision about whether to proceed—calling into question the degree to which the requirement was met in this case. However, the patient's request for reversal of the repair emphasizes other ethical challenges, including autonomy and what respect for autonomy entails. It highlights the distinction between a right to decline invasive treatment, to which patients usually have a strong claim, and access to procedures not considered to be medically indicated (in this case, access to a procedure that would ordinarily be considered inadvisable, if not potentially harmful), to which patients often have a weaker claim [4]. The patient clearly would have had the right to decline her original surgery and may have done so had she been fully apprised of the potential outcomes related to sexuality. She may not, however, have had the same rights of access to the reversal procedure. Feminist theory may reveal the effect of “androcentric reasoning” on the way ethical topics are analyzed [5]. This theory raises at least 2 additional insights. Challenging the primacy of objectivity as a prerequisite to ethical analysis, feminists also highlight the importance of context in analyzing the moral contours of a given situation, such as the context of constraints of care provision in low-income countries. In this case, the patient's circumstances were a relevant context; in such circumstances, the degree to which her current request for surgery was uncoerced and meaningfully autonomous was questionable, thus raising the issue of whether providing reversal surgery would be respecting autonomy after all. In addition, feminism highlights the importance of relationships, as opposed to the primacy of non-interference that characterizes traditional moral theory. In many cases of fistula surgery, the maintenance of relationships—in addition to continence—is a central driver. Attention to the ways in which relationships with others shape requests for and refusals of invasive surgery may be helpful in ensuring that a patient's needs for information and care are met. The under-resourced context would also challenge standard notions of beneficence, or the duty to benefit the patient. Arguing for her request for reversal, it is possible that her ultimate fate could be more devastating if her husband abandoned her than if she underwent the reversal procedure and he stayed. Safety nets for impoverished women in under-resourced countries are often lacking; abandonment can result in food and personal insecurity. Infertility, the social stigma attached to loss of husband, and the inability to find another husband can also have devastating effects on women in such circumstances. Beneficence-based obligations to this patient might have pointed to reversal surgery as comparatively beneficial, or the “least-worst” option. The decision to perform the reversal procedure, however, would be fraught with other uncertainties. Would the reversal succeed in achieving the patient's stated goal: to resume sexual function? Would the patient suffer complications from a procedure with no known efficacy or well-described operative technique? If reversal surgery succeeded in accomplishing the patient's goals, would her husband stay with her—as she anticipated—or would the resulting incontinence ultimately drive him away, as in so many other cases of women with obstetric fistula? In considering the overall profile of benefits versus harms in the context of a constrained claim of access and limited patient autonomy, the physicians decided that the greater risk to the patient was to perform another surgery and declined her request for reversal. 2. Case 2 A 31-year-old woman, gravida 5, para 3, with stage 4 AIDS was pregnant with twins at 29 weeks. She was admitted with signs, symptoms, and radiographic evidence of pulmonary tuberculosis. She had a CD4 count of 40/mL and had received no prior medical treatment for AIDS or tuberculosis. Despite initiation of therapy, she slowly experienced respiratory decompensation. Ultrasound showed 2 live fetuses with asymmetric growth and an estimated gestational age of 27 weeks. The woman ultimately experienced confusion and shortness of breath with decreasing oxygen saturation levels; her chances of survival were felt to be very low. Intubation and ventilation were not an option in the facility. She was not married and there were no family members available for consultation. Debate arose within the medical team over the merits of delivering the fetuses before the patient's status deteriorated further. This case highlights decisions for which respect for autonomy are usually held paramount: whether to deliver fetuses prematurely; whether to undergo cesarean delivery; and how the circumstances of impending death should dictate the timing of the delivery. However, given the patient's mental status—and without the benefit of conversations preceding her rapid decline or available family members— other ethical considerations emerge. Most straightforward, in the absence of a patient's ability to make an informed choice between options, the salient ethical principles guiding medical decision making are based primarily on beneficence and its corollary non-maleficence: in short, the balance of benefits and harms. In this case, however, which path might constitute the least harm and the most benefit was unclear. In contrast to what might be expected in a high-income country, no intensive care unit was available that would have provided the woman necessary care for her worsening condition. Similarly, no neonatal intensive care unit was available to manage the inevitable complications of a premature delivery of compromised neonates. Several other uncertainties further complicated the decision for delivery. Would the patient's already tenuous condition worsen if she J.P. Wilkinson et al. / International Journal of Gynecology and Obstetrics 113 (2011) 25–27 underwent induction of labor or a cesarean delivery? Would the surgeons cause harm to the woman in the hope of achieving a miracle for the fetuses? Or could delivery improve the maternal status enough to improve her chances of survival? Evidence supports improving maternal resuscitative efforts in the event of cardiac arrest by performing an immediate cesarean [6,7], but similar compelling evidence did not exist for this patient's condition, particularly given the limited resources. The impact on the fetuses was similarly uncertain. Would they be delivered only to die shortly afterward owing to the consequences of prematurity? In most high-income settings, twins at 29 weeks would have a greater than 90% chance of survival. Without the benefit of an advanced nursery, neonatal ventilators, or surfactant, the probability of survival of a singleton at 29 weeks was estimated, based on prior experience, at 15%. Realistically, with this patient having not received steroids for fetal lung maturity and at an advanced stage of AIDS, in addition to fetal asymmetric growth restriction, the probability of survival was lower, raising the question of whether delivery would improve the overall chances of neonatal survival. In the face of such uncertainty, surrogate decision making often has a role. Under-resourced settings often lack a reliable system of medical power of attorney to assist in such cases. Thus, in the midst of uncertainty, the burden of decision making about the patient's care fell to her team of physicians. Although not unheard-of in high-income countries, our experiences in under-resourced settings have often entailed the added moral burden of explicit consideration of the appropriate distribution of resources. In high-resource areas, such considerations are usually appropriately shifted from bedsides to public policy fora; this is not so easily accomplished in under-resourced settings, where the impact of a decision on other patients is readily appreciable and a very pressing moral consideration for practitioners facing these difficult choices. In this case, in the absence of an autonomous decision by the patient or proxy and the lack of clarity on beneficence, considerations of justice and the appropriate allocation of resources carried the day. The care of 2 premature neonates in an already crowded and understaffed nursery (with a nurse:patient ratio of up to 40:1), possibly with the sequelae of advanced maternal HIV infection and intrauterine asphyxia, would further burden an already challenged neonatal unit. The intensive needs of the newborn twins would detract resources from other infants with greater chances of intact survival. Ultimately, the decision was made not to intervene for the fetuses, and 36 hours later the mother died with fetuses in utero. 3. Conclusion Ethical decision making in women's health presents unique challenges related to the simultaneous care of woman and fetus, in addition 27 to other sensitive issues regarding sexuality and private matters that are often not debated in the public domain. The complexity of this decision making is intensified in low-income countries, where resource limitations, understaffing, and cultural issues can converge with challenges in women's health to create pressing ethical conundrums. Both cases presented highlight the ways in which under-resourced settings challenge traditional notions about the role of autonomy in ethical decision making. In each case, autonomy ordinarily would have guided the decision making but, for different reasons, was either limited or absent. In the first case, challenges to autonomy emerged from barriers to meaningful informed consent for the fistula surgery, and gender power differentials characteristic of family relationships and social structure that likely guided the patient's request for the reversal surgery. In the second case, in the absence of decisional capacity, family, and power of attorney, responsibility for the decision—and its consequences—lay entirely with the surgeons, whose situation led them to considerations of resource allocation. Like surgical instruments available to providers in under-resourced settings, the traditional tools of ethics are helpful, but must be carefully honed for this setting. Acknowledgments Financial support was provided by the Department of Obstetrics and Gynecology at Duke University, the Hubert Yeargan Center for Global Health, and the Duke Global Health Institute. Conflict of interest The authors have no conflicts of interest. References [1] Little MO. Abortion, intimacy, and the duty to gestate. Ethical Theory Moral Pract 1999;2:295–312. [2] Kukla R. Conscientious autonomy: displacing decisions in health care. Hastings Cent Rep 2005;35(2):34–44. [3] Wolf S. Feminism and Bioethics: Beyond Reproduction. New York: Oxford University Press; 1994. [4] American College of Obstetricians and Gynecologists. ACOG Committee Opinion No. 395. Surgery and patient choice. Obstet Gynecol 2008;111(1):243–7. [5] Little MO. Why a feminist approach to bioethics? Kennedy Inst Ethics J 1996;6(1): 1–18. [6] DePace NL, Betesh JS, Kotler MN. 'Postmortem' cesarean section with recovery of both mother and offspring. JAMA 1982;248(8):971–3. [7] Marx GF. Cardiopulmonary resuscitation of late-pregnant women. Anesthesiology 1982;56(2):156.