Compounding Vulnerability: Pregnancy and Schizophrenia

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Compounding Vulnerability: Pregnancy andSchizophreniaDenise M. Dudzinski aa University of Washington School of MedicinePublished online: 18 Aug 2006.

To cite this article: Denise M. Dudzinski (2006) Compounding Vulnerability: Pregnancy and Schizophrenia, The AmericanJournal of Bioethics, 6:2, W1-W14, DOI: 10.1080/15265160500506191

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InFocus Article

Compounding Vulnerability:

Pregnancy and SchizophreniaDenise M. Dudzinski, University of Washington School of Medicine

The predominant ethical framework for addressing reproductive decisions in the maternal–fetalrelationship is respect for the woman’s autonomy. However, when a pregnant schizophrenicwoman lacks such autonomy, healthcare providers try to both protect her and respect herpreferences. By delineating etic (objective) and emic (subjective) perspectives on vulnerabil-ity, I argue that options which balance both perspectives are preferable and that acting onetic perspectives to the exclusion of emic considerations is rarely justified. In negotiating per-spectives, we balance the etic commitment to protect the vulnerable patient and her fetusfrom harm with the emic concern to empower a decisionally incapacitated woman. Equilib-rium is best achieved by nurturing interdependent relationships that empower and protect thevulnerable woman. The analysis points to the need for better social support for mentally illpatients.

Keywords

clinical ethics

vulnerability

integrity

schizophrenia

decision-making capacity

maternal-fetal relationship

INTRODUCTION

Traditionally, the obligation to protect vulnerablepatients without decision-making capacity seeks torelieve them of the burden of decision-making andauthorize a surrogate charged with standing in asan autonomous and rational moral agent. The sur-rogate keeps the patient’s best interests and prefer-ences in mind and, in collaboration with healthcareproviders, makes treatment decisions for the pa-tient. This ‘best interest’ model is based in thenormative value of respecting patient autonomy,often understood in terms of self-sufficiency. Eitherthe patient is self-sufficient in decision-making orwe have grounds to question her decision-makingcapacity. But when a schizophrenic woman canonly exercise limited (if any) genuine autonomy,the best-interest model is complemented by atten-tion to objective and subjective perspectives on vul-nerability. Using a conceptual model described byJudith Spiers (2000), I argue that our perspectiveson vulnerability influence our response to vulnera-ble patients. A ‘respect for vulnerability’ approachbalances etic (objective) perspectives interested inprotecting the patient with emic (subjective) per-spectives reflected in the patient’s seeking and ac-cepting empowerment through interdependence.Through such balance, the schizophrenic motherand her developing fetus are more likely tobe well, although they will not be spared allsuffering.

CASE SUMMARY1

Rebecca is a 34-year-old woman with chronicschizophrenia, with poor response to medical ther-apy, and poly-substance abuse (crack cocaine, mar-ijuana, nicotine, and alcohol). Her schizophreniais characterized by disorganized thought (markedby tangential thoughts and derailment); disorga-nized speech (marked by word salad, neologisms,and rambling); auditory hallucinations; and delu-sional ideas. Rebecca can understand simple con-cepts, greet others, and utter a few coherent simplesentences (e.g., “I feel good today”); but after a fewsentences it becomes increasingly difficult to deci-pher her message. The more complicated and stress-ful the topic, the more likely she will have difficultyunderstanding. Over the previous 10 months, Re-becca lost touch with her mental health case workerand was not treated for schizophrenia. Although herschizophrenia worsens without medication, histor-ically medical therapy produces only modest im-provement in her cognitive and communicationskills.

Rebecca was over fourteen weeks pregnant whenshe came to the obstetrical clinic. Several days be-fore her visit, Rebecca told the social worker that

1. Non-essential aspects of the case and all names havebeen changed. For discussion of this case absent the vul-nerability framework outlined in this article, see Dudzin-ski and Sullivan 2004.

The American Journal of Bioethics, 6(2): W1–W14, 2006 ajob W1Copyright c© Taylor & Francis Group, LLCISSN: 1526-5161 print / 1536-0075 onlineDOI: 10.1080/15265160500506191

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The American Journal of Bioethics

she wanted an abortion. During her appointmentshe told her physician “no baby—abortion” whilegesturing as if she were taking something out ofher stomach and putting it down. When asked ifthat meant she wanted an abortion, she nodded.Soon thereafter, her speech became incoherent. Theconsulting psychiatrist’s assessment revealed thatRebecca lacked decision-making capacity. A clini-cal ethics consultation was requested.

The clinical ethics consultant met with the pa-tient and psychiatrist several days later. At thatmeeting Rebecca stated that she “wants baby—mine.” She also said that her boyfriend was not thefather, but she was unable to identify the father.Three years prior, Rebecca’s infant daughter, Sara,was removed from her custody and placed in a fos-ter home. Rebecca is still allowed to visit her withsupervision, and she hopes she will regain custodyalthough this is highly unlikely. Rebecca lives withher boyfriend and does not need assistance with ac-tivities of daily living. She takes the bus to clinicunaccompanied. Her closest relative and legal sur-rogate is her father, Robert. Robert said he wantedto help but needed time to help Rebecca make thisdifficult choice. He was invited to participate inher clinic visits via phone, since he is bed-bounddue to advanced multiple sclerosis (Dudzinski andSullivan 2004).

ETIC AND EMIC VULNERABILITY

Both Rebecca and her developing fetus are ex-tremely vulnerable. As philosopher Richard Zanerattests, the vulnerable patient appeals and calls ussimultaneously to action and restraint (Zaner 2000).Such appeals often evoke a response of nurturing andprotection (Mackenzie and Stoljar 2000; Ruddick1989).

In keeping with feminist ethics, I argue for anapproach that nurtures the patient in her vulner-ability by encouraging Rebecca’s interdependence(Dodds 2000; Sherwin 1992). Interdependence hastwo meanings here. First, even self-sufficient, au-tonomous agents are dependent on one another(Dworkin 1993; Wolf 1996). At the very least, wetrust that strangers will not harm us. Second, in-terdependence is expressed when vulnerable peopleseek or accept assistance and support. Reaching outto others can be an expression of integrity—the au-thentic expression of the person’s personality andvalues. Third, the well-being of vulnerable patientsimpacts the well-being of those who love and carefor them, including health care providers and fam-ilies (Mackenzie and Stoljar 2000; Spiers 2000).

A vulnerable person’s dependence obligates usto negotiate a delicate balance between empoweringRebecca to make those decisions she is capable ofmaking (respecting vulnerability), while also pro-tecting her and her developing fetus from excessiveharm (nonmaleficence). We empower a vulnerableperson when we bolster or support her power andability (however limited) to perform tasks, exercisepreferences, and achieve her goals. Empowerment is“a social process of recognizing, promoting, and en-hancing people’s abilities to meet their own needs,solve their own problems, and mobilize necessaryresources to take control of their own lives” (Jonesand Meleis 1993). Empowerment usually presup-poses patient autonomy. For vulnerable patients,empowerment is more modest and incremental. It isachieved through social support, collaboration, ed-ucation, and by encouraging relationships that helppatients influence discrete aspects of their lives.

The conceptual foundation for my analysis ofvulnerability is based on Judith Spiers’ descriptionof etic (objective) and emic (subjective) perspectiveson vulnerability (Spiers 2000). Etic vulnerability isdefined as “the universally present relative risk ofpotential or actual harm from external judgmentsof endangerment, functional capacity, and sociallysanctioned need for intervention” (Spiers 2000,718). The etic perspective describes a patient’s vul-nerability from an outsider’s point of view usingexisting clinical and social schemes for categorizingpatients.

There are five attributes of etic perspectives ofvulnerability. First, the person is endangered becauseof threats, exposures, or liabilities that inhibit func-tion and put the person at higher risk of objectiveharm. Second, in most cases the person’s functionalcapacity to deal with threats and compensate fordeficits is compromised. Third, an objective, exter-nal assessment is made that the person is at increasedsusceptibility to harm. We can observe and measure be-havior that demonstrates the person’s effectivenessin balancing endangerment and functional capac-ity (i.e., we can observe behaviors that demonstratecoping and adaptability). Fourth, society appointsexperts to assess vulnerability and determine a per-son’s need for intervention. There is a tendency tovalue the expert’s perspective to the exclusion ofother perspectives, and policy decisions are highlyinfluenced by expert opinions. Finally, the etic per-spective recognizes that vulnerability is universal—that everyone is susceptible to health endanger-ment depending on circumstances (Spiers 2000,718).

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Pregnancy and Schizophrenia

Rebecca is a member of a several vulnerable pop-ulations. She is schizophrenic, pregnant, decision-ally impaired, indigent, and she uses illicit drugs.Excessive reliance on objective perspectives maycompound a patient’s vulnerability. The patient ismore likely to be coerced or exploited because pro-tecting the patient often means unduly controllingor restricting her freedom (Spiers 2000). In gen-eral, an etic approach will prioritize protection overempowerment.

Alternatively, the emic perspective sees vul-nerability as a lived experience. Spiers describessix attributes of emic perspectives of vulnerability.First, integrity is challenged when a “person’s sense ofsoundness” is disrupted (Spiers 2000, 719). This isa non-moral, descriptive notion of integrity, sug-gesting that any significant disruption in a per-son’s health and relationships can present a chal-lenge to integrity. One need not be autonomousto have integrity. Second, the person is uncertainabout whether she can adequately respond to chal-lenges. Such challenges may present themselves asexternal or internal threats. Challenges may also bepositive opportunities for growth. Third, the per-son questions her capacity for action in withstanding,integrating, or coping with the challenge. Such ca-pacity may include regular dependence on socialservices and loved ones, so the patient need not bestriving for self-sufficiency. Fourth, vulnerability ismultidimensional and arises frequently in various as-pects of our lives. Fifth is the person’s perception ofpower defined as “the extent to which a challenge di-rects or constrains action” (Spiers 2000, 719). Sixth,vulnerability is mutual, occurring in direct interper-sonal relationships, therefore caregivers and familymembers may also be vulnerable if they think ei-ther Rebecca or her developing fetus is in jeopardy.In general, an emic approach to vulnerability willprioritize empowerment or interventions that min-imize a patient’s experience of vulnerability. I ar-gue that when vulnerable pregnant patients appeal,the best response is to nurture interdependent re-lationships that allow us to balance etic and emicperspectives in efforts to both empower and protectRebecca.

INTERDEPENDENT VULNERABILITY:

THE MATERNAL-FETAL RELATIONSHIP

How are we to understand our obligations to Re-becca in the context of the complex maternal-fetalrelationship? How shall we conceptualize the moralstanding Rebecca’s pre-viable fetus? In Ethics in Ob-stetrics and Gynecology, McCollough and Chervenak

(1994) clarify the maternal and practitioner obliga-tion to a fetus. It is not the individual character-istics, such as looking human, or consciousness, orthe ability to reason that confer moral status on thefetus. It is rather the fact that the fetus stands in aspecial relationship with others (c.f. Sherwin 1991,1992; Callahan and Knight 1992). As McColloughand Chervenak point out, it is in the context of thematernal-fetal relationship that the dependent fe-tus becomes a patient. The fetus’ relationship to thepregnant woman dictates all other relationships. Ifshe terminates the pregnancy, all fetal relationshipsnecessarily dissolve.

Most people agree that some time after birtha human being possesses independent moral sta-tus which is related to personhood. Prior to thattime, links are established between the fetus andlater achieving independent moral status. Thoselinks are: 1) viability (i.e., the fetus can surviveex utero with technological support through theneonatal period) and 2) the autonomous decisionof the pregnant woman regarding the pre-viablefetus (McCullough and Chervenak 1994, 101).McCullough and Chevernak argue that fetuses thatare likely to later achieve independent moral statushave ‘present interests’ in necessary and sufficientconditions for achieving such status. If the fetus canreliably be expected to achieve independent moralstatus in the future, the fetus benefits from prenatalinterventions that help achieve the future social role(Callahan and Knight 1992, 227; McCullough andChervenak 1994, 102). Obligations arise when thebenefit to pre-viable fetus likely to be born can beascertained.

McCullough and Chevernak distinguish obli-gations to viable and pre-viable fetuses. Viable fe-tal patients may benefit from medical interventionsthat prevent death in utero and ex utero and pre-vent disabilities, disease, injury, pain, and suffering(1994, 102). Once viable, mother and health careproviders have beneficence based obligations to thevulnerable fetus, however these are always balancedwith the woman’s experience of health and well-being.

At 14+ weeks, Rebecca is carrying a vulnerablepre-viable fetus. Her fetus’s only link to viabilityis gestation in Rebecca’s body. This makes the pre-viable fetus vulnerable to the pregnant woman’s be-haviors, including whether or not she continues thepregnancy, what she eats, her mental health, whatdrugs and medications she takes, and her physicalsafety. A pregnant woman may allow her pre-viablefetus to become a patient (through prenatal care,

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fetal diagnostic procedures, etc.). By requesting ter-mination, the pregnant woman asks the physicianto treat her alone as the patient.

McCullough and Chevernak’s sensitive analysisrelies on a ‘respect for autonomy’ ethical framework.Maternal-fetal conflict arises when the woman’spresent interests conflict with her fetus’ future in-terests. But in Rebecca’s case, the ethical dilemma isbased in mother and fetus’ present and future vulner-ability and dependence more than on a conflict betweenRebecca’s emic interests and our etic obligations tothe fetus. Perhaps the vulnerability framework canbe helpful. Because of her schizophrenia, Rebecca’scapacity to protect herself and her fetus is com-promised. She needs help. What kind of help isbest? Using a vulnerability framework, two ques-tions guide us. What can we do to empower thepatient? What can we do to protect the patient andher fetus while minimizing Rebecca’s vulnerabilityto harm, coercion, and exploitation? First we turnour attention to Rebecca.

CAPACITY TO MAKE DECISIONS

Because fetal well-being depends first on mater-nal well-being and second, on Rebecca’s assent toterminate or continue the pregnancy, how can wesupport Rebecca? According to traditional etic ap-proaches, physicians protect vulnerable patients byassessing their decision-making capacity (DMC).The assessment is designed to decipher whether ornot a patient is competent to voluntarily and oftenindependently consent to the particular treatmentor intervention in question. Criteria for DMC aremore or less strictly applied depending on the se-riousness of the consequences of the decision to bemade (Buchanan and Brock 1989, 343–44; Daviset al. 2003).

While schizophrenic patients’ DMC may be in-termittently impaired depending on whether or notthey are on therapeutic levels of anti-psychotic med-ications, Rebecca is chronically incapacitated. Thisis due, in part, to the fact that her schizophreniahad not been treated for almost a year, but evenwith treatment her response to medical therapy ispoor. Rebecca can respond coherently to questionsabout her pregnancy, but she begins to babble andbecome agitated when asked, in the simplest terms,about the implications of abortion for her. A psy-chiatrist assesses Rebecca’s capacity to choose elec-tive pregnancy termination and determines that shelacks certain capacities required to provide valid in-formed consent.

Traditional understandings of decision-makingcapacity highlight the importance of the patient’sability to absorb and recall pertinent medical in-formation; the patient’s cognitive capacity to un-derstand the implications of treatment decisionsfor herself and her future child; her ability to vol-untarily make a choice based on her own valuesand beliefs; and her ability to explain her decision(c.f. Berg et al. 2001; Buchanan and Brock 1989;McCullough et al. 2002). Such approaches tend tominimize the relational nature of decision-making,especially for patients with diminished autonomy.These models suggest an etic approach prioritizingthe role of the benevolent care giver and surrogatein protecting patients from their own poor deci-sions. “The function of a competence determinationis to sort people into two classes: those whose de-cision must be respected, and those whose decisionwill be set aside and for whom others will be des-ignated as surrogate decision-makers” (Buchananand Brock 1989, 84). Empowerment need not beset aside when we determine that a patient needsprotection. Protection and empowerment are oftenpossible and negotiable.

There are accepted guidelines for caring for pa-tients who lack decision-making capacity, reflectingthe philosophy that patients with diminished DMCshould be involved with decisions commensuratewith their level of capacity (Committee on Bioethics1995; Leiken 1983). The American PsychologicalAssociation recommends that physicians: 1) providean explanation; 2) seek the patient’s assent; 3) con-sider the persons’ preferences and best interests; and4) seek permission from a legally authorized personwhen necessary (American Psychological Associa-tion 2002, 3.10). These guidelines reflect the physi-cian’s obligations to both protect and empower apatient like Rebecca. Etic requirements are met be-cause surrogate partnership protects Rebecca. Emicrequirements are met because the patient’s experi-ence of vulnerability is respected by seeking assent.Further, assent recognizes the mutual vulnerabilityof Robert and Rebecca. Robert has a personal inter-est in his daughter’s well-being. If Rebecca’s tumul-tuous life improves, then her father will be relieved(Mackenzie and Stoljar 2000, 4; Spiers 2000). Surro-gate and vulnerable patient depend on one another.

Rebecca frequently comes to clinic unaccom-panied and she almost always keeps her clinic ap-pointments. She seeks and accepts care, assenting tominimally-invasive treatments such as injections,physical exams, and psychiatric evaluations. Ac-cepting her independent assent for such treatments


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is ethically justified not only because it meets best-interest standards, but because her presence at clinicsuggests that she seeks and accepts help from hercare providers. This relationship both empowers andprotects her.

If Rebecca’s father, Robert, consents to abor-tion, Rebecca’s contemporaneous verbal or behav-ioral dissent would warrant halting for the followingreasons. First, the abortion is elective; neither thehealth of the mother nor fetus is at risk. Second,Rebecca could be harmed by being compelled toundergo an abortion against her will, even if health-care providers and Robert judge an abortion to be inher best interest. Her resistance would be an emicexpression of vulnerability and an attempt to exertpower in the situation. Third, compelling abortionagainst her will puts exclusive emphasis on the eticinterpretation of vulnerability—that she and her fe-tus must be protected from the risk of the pregnancy.Rebecca requested abortion on only two occasions,interspersed with more frequent desires to continuethe pregnancy. Her assent on these occasions is notvalid because it was not accompanied by Robert’sconsent and because her wish for an abortion is notconsistent. When patients make consistent and per-sistent requests, such statements are more likely toreflect genuine preferences.

INITIAL RECOMMENDATIONS

Given the above considerations, the ethics consul-tant makes the following five recommendations:

1. Treat Rebecca’s schizophrenia. Rebecca assents tohaloperidol injections once a month at her clinicappointment. Once again, etic and emic per-spectives converge to provide overall benefit toRebecca. When Rebecca’s schizophrenia is bet-ter controlled, her decision-making capacity im-proves and she is less vulnerable to harm becauseher thinking is clearer. By assenting to intra-muscular administration, Rebecca assents to re-ceive care thereby fostering interdependence.

The advantage to this approach is that it com-bines etic and emic perspectives. First, her doc-tors protect her by seeing to it that she receivestreatment. She will not have to remember totake her medicine. Second, she helps herself inagreeing to receive therapy. The integrity of herhealth and well-being are addressed through co-operation. The disadvantage is that it can taketime and frequent modification of drug dosesto achieve therapeutic levels, and treatment willprobably fail to fully restore her DMC. Still, her

power to participation in decisions may improve.“Depending on the severity of the schizophreniaand the clinical intervention and support of thepsychiatrist and obstetrician, many, if not most,[pregnant schizophrenic] patients can exercisetheir capacity for autonomous decision makingto an adequate degree” (McCullough et al. 2002,698). The social worker asked if Rebecca’s Med-icaid mental health/substance abuse case workercould supervise a supplemental oral medicationregimen, but unfortunately she was not able tohelp. Her boyfriend was out of town. Withoutpartners whom she can depend on, Rebecca’s vul-nerability increases.

2. Ask if Rebecca’s father, Robert, will share decision-making as her surrogate. Ask him about Rebecca, herquality of life and her preferences. Discuss treatmentoptions with both of them. Robert agrees to be Re-becca’s legal surrogate. He is reluctant to makedecisions about her pregnancy because of his per-sonal discomfort with abortion, but he says hewill do what is best for his daughter even if itconflicts with his personal views. We invite himto conference call into her clinic visits. He agreeswith our recommendation to give the medica-tions a chance to work. The treating team offerssupport to Robert also.

3. Postpone abortion decision. Rebecca’s obstetriciancalculates the date that Rebecca’s fetus will beviable (approximately 24 weeks gestational age).Until that date, Rebecca is legally permitted toterminate the pregnancy (Roe v. Wade, 1975).That gives Rebecca and Robert several weeksto make a decision and to visit with clinic staff.During this time, all care providers discuss op-tions with them and frequently try to elicitRebecca’s preferences. The disadvantage to thisapproach is that the as the fetus approaches via-bility, those involved may feel more ambivalentabout termination.

4. Seek better social and community medical support. Con-tinue to educate Rebecca about her pregnancy and thechoices available to her. During the treating period,care providers discuss with Rebecca the risks,benefits, and implications of either terminatingor continuing her pregnancy. The social workerdiligently searches for more social support forRebecca to no avail. Rebecca’s case manager isstretched too thin to offer added support and isunable to provide even basic support for weeksat a time. Rebecca manages to keep most of herclinic appointments, however she often arrivesalone.


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5. Seek legal advice. The clinic’s legal counsels says aguardian ad litem, often appointed for incompe-tent patients whose surrogates seek sterilization,is not necessary in this case because Robert isa competent surrogate, abortion is elective, andRebecca’s health is not in jeopardy by continu-ing the pregnancy. Rebecca receives her antipsy-chotic medications in clinic for four weeks; how-ever, her decision-making capacity does not im-prove. Her thoughts remain disorganized and herspeech is often nonsensical. She still uses cocaine,marijuana, and nicotine “sometimes.” Her caregivers discourage her from using drugs, awarethat such discouragement is likely futile with-out better social services.

QUALITY OF LIFE

When we consider subjective and objective perspec-tives to assess how medical interventions positivelyand negatively impact the patient’s life, we are con-cerned with the patient’s quality of life. Patientsoffer a personal evaluation of the satisfaction they ex-perience in their physical, mental, and social sit-uation. Observers offer an outside perspective on thepatient’s personal life (Jonsen et al. 2002, 107).

Little is known about Rebecca’s day-to-day life.She is unemployed and on disability. She has beenarrested for sale and possession of cocaine and forprostitution, suggesting she may be trading sex fordrugs. Like up to a third of other schizophrenic pa-tients, she continues to abuse drugs, especially co-caine and marijuana (Bennedsen et al. 1999, 2001b;Bennet et al. 2001, 163; Carey et al. 1999). Sherarely sees her siblings or her parents and Rebeccasays she does not have any friends. She loves andfeels supported by her boyfriend, but he has beenout of town for much of the pregnancy. He knowsshe is pregnant and has not been told that he is notthe father. She says that her dad helps her with “thebig stuff” and her boyfriend helps her with “the lit-tle stuff.” Rebecca holds some false beliefs about herpregnancy. Even though she has been told that herbaby will be placed in foster care, she sometimesthinks she will raise him/her. Rebecca also missesSara. Her estrangement from her family suggeststhat her loved ones are also vulnerable—that theircapacity to help is strained because Rebecca needsmultiple nurturing relationships for support. Pa-tients like Rebecca frequently experience poor so-cial support, are often unable to hold steady jobs,and are easily influenced and exploited.

PATIENT SAFETY

Because Rebecca cannot tell us much about her feel-ings of being unsafe, we rely on her father andobjective facts to help us sketch an etic perspec-tive. This helps us understand where risks lie forRebecca, allowing us to help her establish and im-prove protective and nurturing relationships. Re-becca’s schizophrenia is poorly managed, her judg-ment is impaired, and, like many patients in hersituation, she is vulnerable to physical and sexualabuse. She also is highly susceptible to coercionboth within and outside of the medical context.It is entirely possible that her pregnancy is a resultof rape. She says she occasionally steals and tradessex for drugs. Like many other patients with severeschizophrenia who use drugs, she is more likely toengage in unsafe sex and is more susceptible to vi-olent outbreaks (Bennett et al. 2001; Maisto et al.1999; Swartz et al. 1998a, 1998b). Once or twice,Rebecca’s hallucinations caused unexpected aggres-sive behavior. The courts have been lenient with herfor the most part.

Rebecca is eligible for the highest level of Medi-caid support, but her overextended case worker doesnot track her down when she disappears for days,which happens several times a month. Rebecca’s caseworker is supposed to supervise her when she takesher medicine, but Rebecca has been off her antipsy-chotic medications for ten months, suggesting shewas ‘lost’ to the case worker. A potentially help-ful relationship with the social worker is compro-mised by a social system that overburdens casework-ers so that they do not have time for patients likeRebecca,

The appeal of vulnerability bellows when a pa-tient cannot protect herself from harm and violence.The healthcare provider’s etic obligation is to de-vise strategies to keep the patient safer than shewould be without help. Provided the patient sensesthe risk and wants to comply with such strategiesas an expression of her integrity and power (how-ever limited), emic perspectives are also respected.The social worker plays a crucial role in this re-gard, sustaining a relationship with Rebecca andRobert between clinic appointments that buildsRebecca’s faith in the team’s willingness to helpher. Still, charity and state support are severelylimited. This is partly because of our society’s en-chantment with an autonomy that implies self-sufficiency. Susan Wendell writes, “(M)any of the‘special’ resources the disabled need merely com-pensate for bad social planning that is based on


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the illusion that everyone is young, strong, healthy(and, often, male)” (Wendell 1992, 68). As westrive to protect and respect Rebecca, we must ac-cept that without better social support Rebeccaand her fetus will continue to be in harm’s way.While the fetus is pre-viable, two options remain forRebecca:

Treatment Option 1

Option 1: (a) Terminate the pregnancy prior to age ofviability; (b) assist with coordinating social support in-cluding improved case management; (c) continue to manageRebecca’s schizophrenia; (d) Continue to educate her andsurrogate about birth control options; and (e) continue tonurture and maintain the team’s therapeutic relationshipwith the patient.

What conditions should be met to proceed withthis option? First, Rebecca should consistently ex-press an interest in terminating the pregnancy. If shefeels more vulnerable being pregnant, she indicatesthat the pregnancy is a challenge to her integrity andher feelings of safety. Such expressions convey her“capacity for action” in coping with the challengeof pregnancy. Second, Rebecca should contempo-raneously assent to abortion. Third, Robert shouldprovide valid informed consent, thereby sanction-ing her preferences and protecting her from ex-ploitation. Fourth, her DMC should repeatedly beassessed as her psychiatric treatment continues inorder to empower her to participate as fully as pos-sible in decisions. Robert and Rebecca have severalweeks to arrive at a decision. Healthcare providersset a firm deadline for decision-making prior to fetalviability.

Potential Benefits

Rebecca might be relieved not to continue the preg-nancy, give birth, and have her child taken from her.She would be spared physical and emotional suffer-ing from pregnancy and childbirth. Prenatal carewould no longer be required. Her risky behaviorswill no longer impact a vulnerable developing fe-tus. Efforts and resources can focus exclusively onhelping her manage her mental illness and drugabuse.

Potential Harms

Rebecca might not understand what is happeningto her, be frightened, or have regrets. If Rebecca dis-sents or resists at the time of the procedure, there isa risk that she will be coerced or manipulated be-

cause providers may strongly believe abortion is inher or the future child’s best interest. Some mightargue that termination is best for the future childbased on the assumption that being born is an injuryto a severely disabled child and therefore the childwould have been better off not being born. Thismoral framework projects a universalized, genericperspective of someone who has not yet been bornand reveals the hegemonic exaggeration of objec-tive perspectives (cf. Ubel et al. 2003). I find thepresumption morally unsound and disrespectful ofthose with disabilities who find their lives fulfill-ing. Judging that someone is better off not existingbecause those who enjoy security and health wouldfind such a life terrifying does not honor the disabledperson’s own sense of integrity but rather imposesan ideal of being able-bodied and self-reliant. Ar-guably, coaxing or coercing Rebecca to abort thefetus may also reflect social biases against mentallyill, drug-addicted women.

Coercion refers to “any action that involves useof authority to override a person’s choices, even ifthose choices are not autonomous” (O’Brien andGolding 2003, 169) or “a credible and severe threatof harm to force or control another” (Beauchampand Childress 2001, 94). Coercion can be a sub-tle interpersonal dynamic, where one person exertshis will on another, or paternalistic, acting againstanother’s choices for her own benefit or to preventharm (Lutzen 1998, 103). Paternalism is “an ethicaljustification, made on the basis of an appeal to benef-icence, for a coercive action” (O’Brien and Golding2003). Health care providers have more power overa schizophrenic mother than they would have overa decisional mother, which means they must exer-cise restraint. When a healthcare provider’s commit-ment to protect a vulnerable patient overrides com-mitment to empower her, coercion is more likely toplay a role.

The impulse to protect Rebecca and her fetusis strong. First, Rebecca lacks social support tohelp her care for her baby, so the child will be re-moved from her custody at birth. Second, despitecaregivers’ sympathy for Rebecca, they may becomefrustrated and paternalistic because she is incapableof adequately adhering to medical regimen andrecommendations (McCullough et al. 2002, 299;Nuspeil 1996). They may also note the risk herschizophrenia poses to her developing fetus. Somestudies show that children born to schizophrenicmothers have increased risk of death by suddeninfant death syndrome, lower birth weight, andlower gestational age, and a marginal risk of having


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at least one congenital malformation (Bennedsen1998; 2001a). Neonatal providers sometimes resentparents of drug-dependent babies (Ludwig et al.1996). Some may think it is not fair to bring achild into the world with an addiction or thatsociety has an obligation to prevent the birth of‘defective’ children (Garcia 1997). These values,accompanied by strong feelings, may lead to pa-ternalistic interventions, just as a belief that all fe-tuses should be born may lead to protection of afetus at the expense of the pregnant woman’s well-being. Such a stance reflects an etically-based “incli-nation to make decisions for, not with, these patientsand their surrogates” (McCullough et al. 2002,699).

From an etic perspective, drug and alcohol usejeopardize the well-being of her developing fetus.Still, like the causes of vulnerability, the causesof alcohol and drug use in pregnancy are multi-factorial (McCullough et al. 2002, 699). Throughintegrated mental health and rehab programs, Re-becca might receive the support she needs to copewith her schizophrenia and drug addiction (Careyet al. 1999; Swartz et al. 1998b).

One such program, The Behavioral Treatmentfor Substance Abuses in Schizophrenia (BTSAS), in-cludes: 1) motivational interviewing where patientsidentify reasons to decrease substance use and de-velop treatment goals; 2) social reinforcement andmonetary reward when the patient’s urine is cleanfor a self-selected drug; 3) social skills training androle playing to learn how to refuse drugs; 4) educa-tion about HIV, condom use, and how drugs affectthe brain, along with coping skills training; and5) problem solving and relapse prevention wherepatients learn to cope with urges, boredom, psychi-atric symptoms, money problems, and low moti-vation, and learn strategies for handling high-risksituations. BTSAS is designed to empower patientsthrough interdependence (Bennett et al. 2001). Un-fortunately, the majority of patients in the pro-gram either drop out, cannot attend consistently,or progress poorly (demonstrated by more positiveurine tests). Still, the fact that the program’s goalswere not achieved (from an etic perspective) does notminimize the important help such a program mayoffer dual diagnosis patients (from an emic perspec-tive). Because of Rebecca’s inadequate case manage-ment and few financial resources, a program likeBTSAS is out of her reach. Without coordinated so-cial services, neither protection nor empowermentis feasible. Without such support, both Rebecca andher fetus suffer.

Treatment Option 2

Option 2: (a) Continue the pregnancy to term with babyplaced in foster care; (b) assist with coordinating socialsupport and manage Rebecca’s schizophrenia; (c) continueto educate her and surrogate about birth control options; and(d) continue to nurture and maintain the team’s therapeuticrelationship with the patient.

What emic and etic conditions should be metto proceed with this option? First, reflecting theemic perspective, Rebecca either no longer ex-presses interest in abortion or refuses it outright.Likewise, if she does not arrive for the scheduledelective termination prior to fetal viability, shewill continue the pregnancy. Second, Robert de-termines that continuing the pregnancy is in Re-becca’s best interest. Third, health care providersprovide prenatal care and treat her schizophrenia.In so doing we foster trust, provide protection,and empower her through nurturing therapeuticrelationships. Rebecca is more likely to come tothe hospital for help when she goes into labor,thereby protecting the baby. Fourth, through ed-ucation and cooperation with her family and caseworker, we prepare Rebecca for pregnancy and de-livery. Finally, preparations should be made forcustody of the child. The social worker tells Re-becca and Robert that the child will be placed inChild Protective Services (CPS) soon after birthand that Rebecca will have supervised visitationrights prior to placement in CPS. None of Re-becca’s family members are willing to adopt herchild.

Potential Benefits

At least temporarily, Rebecca might be able to visither child in foster care as she does with her daugh-ter, Sara, although it is unlikely she will ever regaincustody. Being born benefits the baby by givinghim/her a chance to achieve independent moral sta-tus (Mahowald and Abernethy 1985). Even withoutsuch independence, s/he might still enjoy and ap-preciate her life. It is in the child’s best interest tobe removed from Rebecca’s custody as she cannotprovide a safe home for a vulnerable infant givenher poor social support.

Potential Harms

Rebecca’s drug use, schizophrenia, and treatmentcould harm the developing fetus. Her antipsychoticmedications will likely affect the fetus, althoughwith good medical oversight, haloperidol can safely


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be used (Altschuler et al. 1996; Iqbal et al. 2001;Kerns 1986; Kuller et al. 1996). Some studies haveshown that there is a low risk of congenital malfor-mations when pregnant women take anti-psychoticdrugs (Altschuler 1996; Bennedsen et al. 2001a).There are also documented risks to babies born toschizophrenic women including prematurity, lowbirth weight, and potential genetic disposition forschizophrenia (Bennedsen 1998; Bennedsen et al.2001b). However, another study found no such in-creased risk (Miller et al. 1992). Further, “many[schizophrenic women] can successfully parent theirchildren, given adequate support” (McCulloughet al. 2002).

Many studies have shown that infants of womenwho use cocaine during pregnancy have decreasedbirthweight, increased incidence of abruptio pla-centae, preterm delivery, impaired fetal growth,and/or delivery of small-for-gestational-age in-fants (Behnke and Eyler 1993; Burkett et al.1994;Chasnoff 1991; Chasnoff et al. 1992; Feldmanet al. 1992; Finnegan 1994; Kliegman et al. 1994;MacGregor et al. 1987; Petitti and Coleman 1990;Spence et al. 1991). Other studies suggest cocaineuse is not a significant predictor of birthweight(Goldfarb et al. 1991; Shiono et al. 1995.) Prena-tal cocaine use also negatively impacts infant motormaturity and tone, autonomic stability, and reflexes,and contributes to central nervous system anoma-lies up to two days after birth, however effects ofprenatal cocaine exposure largely disappear on daythree (Richardson et al. 1996). Children of motherswho used cocaine have increased behavioral, devel-opmental, and emotional problems (Hawley et al.1995; Kenner and D’Apolito 1997). Neurobehav-ioral development is improved when children growup in supportive educational, social, nutritional cir-cumstances. Hence, some developmental problemsassociated with prenatal cocaine exposure are atten-uated by improving the child’s social and educa-tional circumstances (Accornero et al. 2002; Eylerand Behnke 1995; Hulse et al. 1997; Koren et al.1998; Ludwig et al. 1996). These studies suggestthat while the developing fetus is certainly vulnera-ble to harm from prenatal drug exposure, disabilityis not a forgone conclusion. A strict etic determina-tion that such a child is better off not being born isunjust, devaluing the lives that many disabled peo-ple (including Rebecca) lead. The risk to the childis real and deserves serious consideration, but therisk that the child will suffer does not logically leadto the conclusion that the child should never havebeen born.

REBECCA’S PREFERENCES OVER TIME

Rebecca only mentioned abortion on two occasions.Every other time she or her providers discussed herpregnancy, she said she “wants baby, love baby.”Rebecca states she wants to “keep the baby if hecan be with me.” Sometimes she seems aware thatthe child will be removed from her custody. Othertimes she believes the baby will stay with her. Re-becca misses the clinic appointment where a finaldecision had to be made. Since she always arrivedfor previous appointments, her absence might havebeen an emic expression of her preference to con-tinue the pregnancy. Robert said they just had notcome to a decision because he still did not knowwhat was best. Now that elective termination is nolonger a viable option, two alternatives remain.

Treatment Option 3

Option 3: (a) Seek Rebecca’s voluntary assent to inpatientpsychiatric treatment during her pregnancy; (b) assist withcoordinating social support and manage her schizophrenia;(c) continue to educate her and Robert about birth controloptions; and (d) strive to nurture and maintain the team’sfruitful therapeutic relationship with the patient.

This is the best option now that Rebecca’s preg-nancy will continue because it strikes a balance be-tween emic and etic perspectives.

Potential Benefits

If Rebecca assents to inpatient psychiatric treat-ment, she and her developing fetus would certainlybenefit. First, she is empowered by accepting help.Her “capacity for action” improves within protec-tive boundaries. She is more likely to thrive whenshe makes her own choices and controls her environ-ment to some degree (O’Brien and Golding 2003,171). Her schizophrenia could be better managed.Most importantly, Rebecca would be protected fromthe threat of rape, physical abuse, and the lure of il-licit drugs. She would be fed and cared for, receivetherapy and possibly drug rehabilitation. The fetuscould be monitored and protected from harm. Sheand her baby would receive immediate attention ifshe went into premature labor. She would not haveto remember to come to her clinic appointments.

Potential Harms

There are few harms if the patient assents as anexpression of her emic perspective of vulnerabil-ity. Still, it is possible that her assent will notendure, which might tempt health care providers


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to coerce her, thereby invalidating her assent andeffectively committing her for involuntary psychi-atric treatment.

Option 4

(a) Involuntarily commit Rebecca to inpatient and/or out-patient psychiatric treatment during her pregnancy; (b)assist with coordinating social support and manage herschizophrenia; (c) continue to educate her and surrogateabout birth control options; and (d) strive to nurtureand maintain the team’s therapeutic relationship with thepatient.

This option prioritizes etic perspectives to theexclusion of emic considerations. The cost of pro-tecting the patient and developing fetus is highsince Rebecca will likely experience it as punitiveand excessively restrictive. When the benefit to thefetus is substantially improved by such interven-tion, we should consider this option very carefullyout of respect for the future interests of the child.However, as various studies have shown, the childmay not experience long term disability even if Re-becca continues to use drugs, and perinatal impair-ment may improve in time (Behnke et al. 2001).In the state where Rebecca lives, mentally ill pa-tients may be detained for evaluation and treatmentfor 72 hours to 180 days. A psychiatrist’s evalu-ation helps judges and county designated mentalhealth professionals determine if the patient meetscriteria for involuntary detention set by the state.Detentions may be highly restrictive (locked inpa-tient treatment centers) or less restrictive (outpa-tient treatment centers and clinics). According tothe Involuntary Treatment Act, failure to complywith outpatient treatment warrants forced inpatientdetention.

Potential Benefits

Option 3. Employing a utilitarian calculus based onan etic perspective, involuntary commitment mightproduce surplus of benefit over harms for fetus andpatient and may reduce the risk of physical harm toboth. Both are safe and both benefit from treatment.

Potential Harms

Restrictive involuntary commitment is a form of co-ercion and needs clinical and ethical justification. Itis only warranted when the patient is either a threatto herself or someone else. Involuntary commitmentcould be used as a threat and implicitly suggeststhat it is permissible to use force to secure the pa-tient’s compliance. On a best-interest standard, the

patient and fetus would benefit from the protec-tion and care afforded by commitment, but do thesebenefits warrant involuntary commitment? Probablynot.

O’Brien and Golding have proposed three ob-jective conditions for the ethical use of coercion inmental health care: First, the client is incompetentto make a decision. Second, harm prevented or ben-efit provided outweighs the harm caused by the co-ercion. Third, the least coercive intervention thatwill promote good or prevent harm should be used(2003, 172). Rebecca meets the first criteria. Thesecond is more difficult. Certainly harms would beavoided and benefits conferred by close medical su-pervision, but why commit her now? Is it becauseshe is pregnant? Is she more of a danger to herself,her fetus, and future child than she was prior to vi-ability when we did NOT attempt to commit her?Involuntary commitment is the most coercive in-tervention and it jeopardizes her best hope for longterm improvement—the nurturing relationship shehas with her care providers. It is also unjust, becauseinvoluntary commitment, prosecution, and incar-ceration are disproportionately imposed on vulner-able pregnant women.

The United States legal system has histori-cally punished pregnant women who use drugsand carry their pregnancies to term. Sometimesreferred to as a “birth penalty,” these women (of-ten minorities, unwed, uneducated, and on pub-lic assistance) are forcibly treated or incarceratedon the grounds that doing so is in the best inter-est of a developing fetus (Garcia 1990, 136). Inthe past, disadvantaged women who used cocaineduring pregnancy were charged with fetal homi-cide, child abuse, unlawful neglect, or drug de-livery/transmission (Garcia 1997; Johnsen 1992).The implication of such cases is that drug ad-dicted women lose some of their otherwise pro-tected rights. Garcia asks whether this loss is due tostatus or conduct (1997, 104). The energy and re-sources spent on prosecution seem misplaced. “Thebest chance the state has for protecting prenatal fu-ture persons is through positive actions that benefitpregnant women, rather than by . . . assailing re-sourceless women for not doing the best that canbe done for their future children” (c.f. Callahan andKnight 1992, 235; Annas 1986). We might con-sider moral objections to putting a vulnerable fetusat risk, but what penalty should Rebecca pay? Theetic commitment to protect the vulnerable fetusbased on objective standards for pregnant womenin general minimizes the individual woman’s emic


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perspective and tends to ignore the multidimen-sionality of vulnerability. By punishing her throughinvoluntary commitment, society says that herrights are less worthy of protection than her devel-oping fetus’s rights (or, more accurately, the rightsof the future person the fetus will become). Incar-ceration, even with the advantage of treatment, is apoor alternative to improved social support, mentalhealth case management, and drug rehabilitation,all of which benefit both Rebecca and the develop-ing fetus.

OUTCOME

Rebecca continued to receive outpatient psychiatrictreatment. She also continued to use drugs duringher pregnancy. The state ordered that she receiveoutpatient treatment and, in the last month of herpregnancy, when she did not adhere to the terms ofpsychiatric treatment, she was brought to the hos-pital where she spent a total of ten days. Rebecca de-livered a healthy term baby and enjoyed supervisedvisits with her son before Child Protective Servicestook custody. It upset her to part from him. She con-tinues to be treated sporadically for schizophreniaand assents to medroxyprogesterone acetate shotsfor birth control. Her schizophrenia is still poorlycontrolled and she continues to be vulnerable withfew social resources.

In a culture that exalts autonomy, Rebecca’s de-pendency compounds her vulnerability. As I haveattempted to show, her dependence on family andhealthcare providers is a source of empowerment forher, reflecting emic perspectives on vulnerability. Itis also a source of protection, reflecting etic perspec-tives. The best options set parameters and treatmentoptions based on etic perspectives and respect emicperspectives and patient assent prior to implemen-tation. While such an approach’s outcomes may notbe significantly different from a best interest ap-proach, such attention to interdependence and vul-nerability do place more emphasis on subjective ex-pressions of vulnerability. Due to the limited scopeof the article, I have not addressed the interdepen-dence between Rebecca and the society who helpspay for her medical care or the community of care-givers who will care for the child in foster care. Ibelieve such analysis is essential and requires mul-tidisciplinary collaborations that represent multi-ple perspectives including those of the mentallyill. By moving away from an “autonomy as self-sufficiency” value system, I suggest that attention tointerdependence and justice might have more prac-

tical use and ethical import for extremely vulnerablepatients.

The tragedy for Rebecca and her child persist,not primarily because both are vulnerable and dis-advantaged, but because of inadequate social struc-tures and nurturing relationships on which theymay depend. When more resources are devoted tosupporting mentally ill patients, we will have re-sponded more responsibly and justly to the mostvulnerable in our community. Obligations to pro-tect and empower belong not only to health careproviders but to all of us. �

ACKNOWLEDGMENTS

The author is grateful to those involved in Rebecca’scare Nancy Jecker, PhD, Mark Sullivan, MD, PhD,and anonymous reviewers.

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Documents

Compounding Vulnerability: Pregnancy and Schizophrenia