Ethically communicating a prenatal Down Syndrome diagnosis: a theoretical model describing its impact on pregnancy termination decisions
Zachary P. Hart
New technologies have made prenatal testing for Down syndrome and other genetic disorders much less invasive and can be done far sooner than other tests. This development is causing many advocates for individuals with genetic disorders to express concern whether balanced information from these tests is communicated to parents (Ritter 2011). This article addresses the ethical concerns of prenatal testing and proposes a model describing the impact of doctor-parent communication on pregnancy decisions. It concludes diagnosis communication is a crucial factor in determining what kinds of people we will or will not have.
About 90-95% of pregnancies diagnosed with Down syndrome are terminated (Tymstra, Bosboom, & Bouman, 2004). With the advent of new, earlier and less invasive prenatal testing for Down syndrome and other genetic disorders, the Down syndrome community, in particular, is raising concerns about whether prenatal diagnoses of genetic disorders are communicated in a one-sided manner, increasing the chances parents will decide to terminate affected pregnancies (Ritter, 2011). Some effort to address these concerns has occurred legislatively through the 2008 Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act, but no funding has been provided to carry out its goals. This article discusses the ethical issues involved in communicating a prenatal Down syndrome diagnosis, particularly with advances in genetic testing technology. It provides a theoretical model explaining how the communication of a diagnosis influences the decision to continue or terminate a pregnancy. The broader implications of how medical practitioners and parents make sense of genetic testing information and use it as a decision making tool also will be addressed. Finally, this article will make theoretical arguments about the impact of diagnosis communication on the determination of what kinds of people we will or will not have.
Recent advances in prenatal testing technology have made it possible to provide a diagnosis of Down syndrome as early as 12 weeks into a pregnancy (Hope, 2012). New testing methods are much less invasive than procedures like an amniocentisis that present significant risks of miscarriage and often are used to confirm a diagnosis (Hope, 2012). Communicating a diagnosis of Down syndrome prenatally or postnatally has always been challenging and approximately 90% of all pregnancies with a known Down syndrome diagnosis are terminated after receiving this diagnosis (Tymstra, Bosboom, & Bouman, 2004). With newer, earlier, and much less invasive testing procedures, the challenge is in some ways greater to present balanced information about the implications of a Down syndrome diagnosis, giving parents the necessary knowledge to make an informed decision about whether to continue with the pregnancy. These decisions not only impact the parents’ and their children’s lives, but also have significant consequences for society as a whole. Will we see fewer people born with Down syndrome? What does that outcome mean for the Down syndrome community or even more importantly, how our society views individuals born with genetic disorders? On the other hand, will we see families better prepared to raise a child born with a genetic disorder and seeking the medical care and early intervention that can greatly enhance the quality of their children’s lives? This article describes recent advances in prenatal testing methods and outlines ethical concerns about testing and delivering a genetic disorder diagnosis. It also discusses the importance of healthcare provider-patient communication and its relationship to parent sensemaking and decision making following the delivery of prenatal genetic disorder diagnosis. It proposes a model explaining how parent characteristics and healthcare provider communication skills interact with healthcare provider-parent communication and impact the decision to continue a pregnancy with a Down syndrome diagnosis. Finally, the article addresses the larger question of how healthcare provider-parent communication ultimately can determine what kind of people our society will have.
Down syndrome, also often called Trisomy 21, is the result of cell division abnormalities that occur very early in a pregnancy and result in extra genetic material from chromosome 21. It is one of the most common genetic disorders and in most cases has no known cause (Mayo Clinic, 2012). First clinically described by Dr. John Langdon Down in 1866, Down syndrome is characterized by intellectual disability of varying range, short stature, distinctive facial features and several congenital abnormalities typically involving cardiac, digestive, and hearing issues (American Academy of Pediatrics Committee on Genetics, 2001). Developmental delays also are common among children with Down syndrome and adults often require continuing support services throughout their lives. Advances in medical care as well as the expansion of early intervention and other support programs have greatly increased the quality of life for individuals with Down syndrome. Life expectancy has increased from approximately 25 years in the early 1980s to almost 60 years in the early 2000s (Glasson et al., 2002). Most individuals with Down syndrome are raised in their family home and attend elementary and secondary school. A few go to college and marry. Many adults with Down syndrome are able to be employed and live independently (National Down Syndrome Congress, 2012). Most families indicate the presence of their family member with Down syndrome has greatly enhanced their lives and research indicates many positive outcomes such as increased empathy and compassion among siblings of individuals with Down syndrome (Heasley, 2011). At the same time, raising and caring for an individual with Down syndrome can be a life-long challenge (Botkin, 2003).
Prenatal testing for Down syndrome has been available for some time. Until recently this testing was invasive typically requiring amniocentesis or chorionic villus sampling to evaluate the fetal karyotype. Amniocentesis is typically conducted after the 15th week of pregnancy and carries a 1 in 200 risk of miscarriage (Mayo Clinic, 2012). Chorionic villus sampling is usually performed between the ninth and 14th week of pregnancy and carries a 1 in 100 risk of miscarriage (Mayo Clinic, 2012). Both tests occur after an initial blood test which identifies about 5 percent of pregnancies at risk of having a child with Down syndrome, but the actual risk is much lower, necessitating one of the more invasive and risky tests to confirm a diagnosis (Mayo Clinic, 2012). Some of these pregnancies would have been born without Down syndrome, but around 300 pregnancies a year are lost due to the testing so many parents decline the testing (Hope, 2012). Recent advances in prenatal testing technology allows 99 percent of pregnancies with Down syndrome to be detected with a non-invasive blood test at 12 weeks (Hope, 2012). The test examines DNA in cells from the unborn baby found in the mother’s blood. It looks for abnormalities that cause Down syndrome and similar genetic disorders.
Ethical Concerns about Communicating a Prenatal Diagnosis for Down Syndrome
The ethical challenges of delivering a prenatal diagnosis of Down syndrome are significant. Providing accurate and current information that presents the positive and negative aspects of raising a child with Down syndrome in a balanced and objective manner is not an easy task. The majority of mothers in the United States report being frightened and anxious when receiving such a diagnosis, affecting their perceptions of the information provided to them by their healthcare provider (Skotko, 2005). Receiving the diagnosis can be an emotional and traumatic event and the healthcare provider must be sensitive in presenting the diagnosis and information about it. Particularly in a postnatal diagnosis where most of the research has been done, studies indicated healthcare providers do not discuss the positive aspects of raising a child with Down syndrome and often provide out of date information (Skotko, 2005). In a prenatal diagnosis, the manner of how this news is communicated is likely to have a strong influence on how parents approach the decision to continue with a pregnancy.
At the same time, advances in prenatal testing may increase the social pressure for parents to agree to a barrage of prenatal tests. This pressure is not necessarily imposed by genetic counselors or even family members, but from what is deemed socially acceptable levels of care during pregnancy (Chipman, 2006). Disability is often considered the primary defining feature of an individual with a disability and when a prenatal test indicates the child may be disabled, it is highly likely the focus will be on the disability rather than giving birth to a loving child who will become their own person and contribute to society (Chipman, 2006). Without the delivery of prenatal diagnosis of Down syndrome in a balanced manner (presenting the challenges and benefits of raising a child with Down syndrome), the focus is likely only on the risks and the challenges. Chipman (2006) points out, however, that caring “for a disabled child is a difficult task, but such a difficult task must reap rather large emotional rewards” (p. 14). The emotional rewards are something that must be mentioned as many parents of children with Down syndrome report their experience has been largely positive (Heasley, 2011). With earlier and less invasive testing, the nature of how a diagnosis is communicated could be substantially different than when it is communicated after extensive and emotionally stressful testing.
Chipman (2006) also argued that prenatal genetic testing proponents may push more women to test because of the perceived difficulties and pressures imposed upon the prospective child with a disability. “I argue that it is not the individual who determines dissatisfaction, but the structure of society in which the individual lives that ultimately determines the ability and willingness of an individual to live with his/her disability” (p. 15). However, Asch (1999) reported that most people with disabilities indicate that their main dissatisfactions come from unemployment and income issues as well as lack of health insurance due to discrimination. Additionally, recent research indicated that the vast majority of parents have a positive view of life because they have a child with Down syndrome, and only 4 percent of respondents with Down syndrome felt sad about their lives (Heasley, 2011). Almost 90 percent of siblings said they feel like they are better people because they have a brother or sister with Down syndrome.
Healthcare providers’ legal obligation to offer and effectively communicate the features of prenatal testing to prospective parents also presents an ethical challenge in communicating a prenatal diagnosis. That legal pressure could well be enhanced with the advent of earlier and less invasive testing. In the past thirty years, the legal concepts of wrongful life and wrongful birth have become well established and a number of cases have been successfully pursued as a result (Botkin, 2003). Wrongful birth suits are filed by parents who claim they have been harmed by the birth of an ill or disabled child. Wrongful life suits are filed by individuals with disabilities who claim harm from their birth in a condition of disability. An important aspect of both types of suits is the availability of prenatal genetic information so parents can make decisions about whether to continue with a pregnancy (Botkin, 2003). The question that arises from earlier and less invasive prenatal testing is whether healthcare providers will be under increased pressure to standardize the new tests as part of the routine tests conducted during pregnancy to remain out of legal jeopardy.
In light of these complex ethical concerns, efforts have been made to develop guidelines for communicating a diagnosis of Down syndrome and a broader discussion has continued about the ethical principles genetic counselors should follow in working with parents who have received such a diagnosis. These activities have occurred at the same time that the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act (2008) became law, requiring healthcare providers to give up to date information to women who have received a positive prenatal diagnosis of a genetic disorder (Asch and Wasserman, 2009). Some criticism has been made of this act due to the limited funding it has received as well its inability to provide information to women prior to making the decision to test.
The National Society of Genetic Counselors recently developed a list of guidelines healthcare providers should follow when delivering a diagnosis of Down syndrome (Sheets et al., 2011). The guidelines follow many of the tenets of appropriate genetic counseling including the central tenet of non-directiveness of the counselor, which requires the counselor to be neutral and balanced in the presentation of the information in order to support and respect the patient’s values and decisions (Sheets, et al., 2011). These guidelines include the following: 1.) Tell the parents about the diagnosis as soon as possible, 2.) Deliver the diagnosis in person by a healthcare provider with sufficient knowledge about the condition, 3.) Meet with both parents together, or arrange a telephone call at a time when both partners will be present, 4.) Inform the family of the diagnosis in their preferred language, 5.) Discuss the diagnosis in a private, comfortable setting, 6.) Provide parents with accurate and up-to-date information, 7.) Provide the information in a sensitive and caring, yet confident and straightforward manner, 8.) Use neutral language and avoid value judgments, 9.) Use sensitive language and avoid outdated or offensive language, 10.) Allow time for silence and tears, 11.) Assess the emotional reaction of the parents, and validate those feelings, and 12.) Provide informational resources (Sheets et al., 2011). The guidelines also mention essential facts about Down syndrome that should be provided such as individuals with Down syndrome have a variable range of intellectual disability from mild to moderate, 50% of babies with Down syndrome have one or more congenital abnormalities, individuals with Down syndrome have friends and intimate relationships, and individuals with Down syndrome can live independently or in a group home (Sheets et al., 2011).
Macer (1998) pointed out that while non-directive counseling is preferable to directive counseling, a number of studies have indicated a considerable range in the actual practice of counseling. “The difficulties expressed include how to ensure that verbal and nonverbal cues remain nondirective, when to recommend further testing, when the client is unable to understand the information, when a better choice is clear and to recommend medical care or counseling, or when a client has difficulty making a decision” (p. 1002). Additionally, the healthcare provider communicating the diagnosis for the first time is not likely to be a genetics counselor. Rather, it is likely to be an obstetrician who has limited time to communicate the necessary extensive and complex information that is necessary for parents to make an informed decision (Botkin, 2003). Bernhardt, Geller, Doksum, Larson, and Holtzman (1998) reported that discussion of prenatal diagnoses of genetic disorders for women less than 35 years old took an average of 2.5 minutes while the time spent delivering a diagnoses of genetic disorders for women over 35 years old averaged 6.9 minutes, hardly sufficient time to provide all the information proposed in the guidelines for genetics counselors in a balanced manner. Botkin (2003) argued that a vast expansion of the discussion of a prenatal diagnosis would require a fundamental and costly restructuring of prenatal services that would be quite difficult to incorporate into the current system of prenatal care. In addition to being provided with materials, parents receiving a diagnosis of Down syndrome are likely to be referred to other specialists including a genetic counselor for additional information, but many parents may not make those visits due to costs or other concerns and will make a decision about continuing a pregnancy based on the limited information provided to them during the initial communication of the diagnosis.
A final ethical concern about communicating a prenatal diagnosis of Down syndrome centers around the adequacy of the clinical training medical school students receive about conditions that create intellectual disabilities (Benn & Chapman, 2010). Their training may influence the accuracy and bias of information communicated about Down syndrome. For example, Skotko (2005) reported many mothers in both the United States and Spain reported their healthcare provider did not discuss positive aspects of Down syndrome when receiving a postnatal diagnosis and most did not receive enough up-to-date information. While the Down syndrome community has made significant efforts to ensure that healthcare providers receive the training necessary to communicate information about Down syndrome, it can be quite difficult to ensure the training is received and successfully implemented
Healthcare Provider-Parent Communication
Doctor-patient communication research provides additional insight into other factors beyond issues related to Down syndrome or prenatal genetic testing that impact the communication of a prenatal diagnosis of Down syndrome. Numerous studies have indicated that effective patient-physician communication can lead to positive incomes in terms of emotional health, pain control, symptom resolution, and lower blood pressure and blood sugar levels (Stewart, 1995). Due to the emotional nature of a Down syndrome diagnosis, the emotional health of the parents, which can be influenced by the doctor’s communication, may be especially critical in determining how they handle the news, the decisions they make, and perhaps even how the pregnancy progresses.
Travaline, Ruchinskas, and D’Alonzo (2005) made a series of recommendations for doctors in their communication with patients that can easily be applied to interactions with parents. They include: 1.) Assess what the patient already knows, 2.) Assess what the patient wants to know, 3.) Be empathetic, 4.) Slow down, 5.) Keep it simple, 6.) Tell the truth, 7.) Be hopeful, 8.) Watch the patient’s body and face, and 9.) Be prepared for a reaction. At the same time, they argued the barriers to effective doctor-patient communication are growing and include speech ability or language articulation, foreign language, dysphonia, time constraints on physician or patient, inability to meet face-to-face, illness, altered mental state, medication effects, cerebral-vascular event, psychologic or emotional distress, gender differences, and racial or cultural differences. Despite these barriers, it is important to have effective communication because “physician(s) who can communicate bad news in a direct and compassionate way will not only help the patient cope, but will also strengthen the therapeutic relationship so that it endures and further extends the healing process” (p. 14). These general guidelines and outcomes can also be applied to the Down syndrome prenatal diagnosis case. Not only could they strongly influence a decision about whether to continue with a pregnancy, but effective doctor-patient communication could strongly impact successful prenatal care during the remainder of the pregnancy.
Doctor-patient communication research also has found socio-economic status has an influence on the relationship. A meta-analysis of 129 studies of doctor-patient communication found lower income patients receive less socio-emotional talk, a less participatory consulting style, a higher percentage of biomedical talk and physician question asking, lower patient control over communication, less diagnostic and treatment information, and more physical examinations (Verlinde, De Laender, Maesschalk, Deveugle, and Willems, 2012). The study also found doctor-patient interaction depends on not only physician behaviors, but also patient characteristics and preferences. The findings suggest a need to make sure physicians are more aware of differences in their interactions with patients from different socio-economic classes as well as a need for more interactions to increase patient participation among individuals from lower socio-economic status. In addition, these findings could have implications for situations in which a prenatal diagnosis of Down syndrome is being communicated. For example, a directive counseling technique may be more likely to be used if the parents are less willing to participate and those parents may perceive the news more negatively as they are presented the news with more of a biomedical approach. Consequently, the parents may become overwhelmed by the information and the potential challenges of raising a child with Down syndrome.
An unbalanced presentation of information by the counselors may be more likely to result in parents following a specific decision recommended during the diagnosis communication, most importantly whether to continue or end a pregnancy and directly impacting the kinds of people we will have. For example, Bernhardt (1997) referenced a study by Brunger and Lippman (1995) that found “counselors report that they attempt early in the counseling session to clarify a woman’s intentions about continuing or terminating her pregnancy and then provide whatever information might be needed to help justify the decision… counselors appear to rationalize their unbalanced presentation of facts by believing that discussion of positive aspects of Down syndrome could be considered directive and critical of the woman’s decision” (p. 18). The evidence of differences in health care provider- patient communication due to socio-economic status suggest parents with a lower socio- economic status may be more likely to be encouraged to terminate their fetus with Down syndrome because of an increased focus on biomedical talk, which tends to feature the medical consequences of the genetic disorder rather than discussion of psychosocial topics (Roter et al., 1997). This type of communication between healthcare providers and patients could also mean children with Down syndrome will be more likely to born to families that have greater financial means. Although it is unlikely to be a planned strategy of the medical community due to the ethical concerns of determining which families should and should not raise children with genetic disorders, the effect of directive counseling differences between socio-economic groups may well have that exact end result.
Making Sense of a Prenatal Genetic Disorder Diagnosis and Its Impact on What Kinds of People We Will Have
The guidelines proposed for delivering a Down syndrome diagnosis suggest that the information contained in such a diagnosis is complex and not easy to explain. According to the National Down Syndrome Congress (2012), multiple meetings with specialists as well as connected parents to a variety of support resources is essential to ensuring the sensemaking process includes balanced information about the negative and positive aspects of raising a child with Down syndrome. Parents are likely to base their perceptions of the initial diagnosis on vague notions of what Down syndrome is. Their previous experience with Down syndrome may be quite limited and may lead to potentially inaccurate perceptions of the disorder (National Down Syndrome Congress, 2012). Weick (1979) argued that when faced with an equivocal situation like a Down syndrome diagnosis, people will enact or interpret the situation based on their prior experience in order to make sense of what is going on. Quite often, those experiences are limited and are based on outdated and inaccurate information and decisions will be made in light of how the equivocal information environment is interpreted. In addition in an information environment that is complex and not easy to understand, parents may process the information based on peripheral characteristics like the doctor’s manner and appearance in presenting the information rather than focusing on the central pieces of information that have been presented (Petty & Cacioppo, 1986). If the doctor focuses on the biomedical characteristics of the genetic diagnosis, the parents’ perception of the diagnosis may focus primarily on the medical impacts of those characteristics as it might be easier to understand and make sense of it (Roter et al., 1997).
Ultimately, the sensemaking process will lead parents to make a decision about how to proceed with a pregnancy. Differing communication approaches by healthcare providers could result in different conclusions and decisions about what to do about the pregnancy. If the parents decide to end the pregnancy, the healthcare provider-parent communication could directly impact whether an individual with genetic disorder will be born. Thus, the communication between healthcare providers and parents about a prenatal diagnosis is a vital component in determining what kind of people we will have.
A Model of Healthcare Provider-Parent Interaction’s Impact on Continuing a Pregnancy with Down Syndrome Diagnosis and Determining What Kinds of People We Will Have
The importance of healthcare provider-parent interaction during the delivery of a diagnosis of Down syndrome, the ethical concerns about that communication and a review of the doctor-patient communication literature suggest a testable model can provide direction for research in this area. This model argues parent knowledge of Down syndrome, parent values system, parent emotional state, parent socio-economic status and healthcare provider communication skills such as active listening and the use of socio-emotional talk (e.g., healthcare provider use of empathy and sensitivity) influences the nature of the healthcare provider-parent communication about a prenatal diagnosis of Down syndrome. The model also proposes that the communication between healthcare providers and the parents regarding the Down syndrome diagnosis, which can occur over multiple meetings with different healthcare providers, acts as a mediator on the decision of parents to continue with a pregnancy involving a baby who has Down syndrome (see Figure 1). Factors like the timing of a delivering a prenatal diagnosis of a genetic disorder, the use of a participatory or directive counseling, the length of time delivering a diagnosis, the use of socio-emotional talk (e.g., the healthcare provider use of empathy and sensitivity), patient control over communication, the provision of current and accurate diagnostic, treatment, and support information all are part of healthcare provider-parent communication (Verlinde et al., 2012). The model argues parent characteristics (such as their value system related to their views on abortion) account for most of the explanation for why a decision is made to terminate a pregnancy with a Down syndrome diagnosis, but the healthcare provider’s communication skills and the interactions between the parents and the healthcare provider may make the final determination about what to do.
Figure 1: A Model of Healthcare Provider-Parent Communication About Prenatal Down Syndrome Diagnosis and Pregnancy Termination Decision
This model provides and organizes direction for future research in this area. Any or several of the aspects of healthcare provider-parent communication can be investigated and explain the complexities of how parent characteristics and healthcare provider communication interact to determine what kinds of people we will have in the future. It is not as simple as only looking at individual value systems and their contribution to decision making, but this model offers a more complex explanation for how parents make decisions about a pregnancy involving a prenatally diagnosed genetic disorder. The model also can be used to test the effectiveness of the National Association of Genetic Counselors recommendations about how to deliver the news of a genetic disorder and can offer recommendations for the most effective ways to ethically deliver such a diagnosis. The results of testing the model can confirm the impact of the recommendations on pregnancy termination decisions and ultimately what kind of people we will have. In addition, the model can be extended further to determine the impact of healthcare provider-parent communication about a prenatal diagnosis of a genetic disorder on parental preparation for the birth of their child and potentially if improved prenatal care results from such communication.
Multiple research methods can be used to investigate this model. For example, qualitative interviews of parents and healthcare providers can explore the value systems of the parents, ask for descriptions of the diagnosis communication and obtain parent and healthcare provider views of how their interactions impacted decisions about pregnancies. Existing and new survey instruments can measure all the variables identified in the model. For example, Makoul, Krupat and Chang (2007) developed and tested a communication assessment tool to measure patient views of physician communication skills. This tool can easily be adapted to measure healthcare provider communication skills. Additional survey instruments need to be developed to measure other variables in the model such as specific features of healthcare provider and parent communication about the diagnosis. It will be important to collect data from both the parents and healthcare providers as their perspectives may differ significantly about their own characteristics as well as about their interactions. It is virtually impossible to observe or manipulate the actual interactions in a quasi-experimental setting due to privacy and ethical concerns so interviews or survey data collection are the most appropriate approaches to study this topic. Finally, many qualitative and quantitative tools are available to analyze data from future investigations. For example, structural equation modeling (SEM) is an excellent approach to analyzing a path model such as the one proposed in this model (Hox & Bechger, 2006).
This article and its proposed model suggest that prenatal testing and parental values by themselves will not be the only factor determining the extent to which we will continue having babies born with Down syndrome. The communication between healthcare providers and parents is necessary to not only provide information about what life is like raising a child with Down syndrome, but it also will significantly affect how that information is perceived and how it relates to the value system of the parents as they determine what they want to do. The expansion of prenatal testing for Down syndrome that is becoming easier and earlier means more and more parents expecting a child with Down syndrome will receive this news prenatally rather than postnatally. As a result, the decision as to whether to continue such a pregnancy and whether we will have a world with fewer and fewer people with Down syndrome will be confronted by many more parents than ever before. Having more parents receive this news prenatally also could significantly impact decision making about medical care for the mother and the child during and after the pregnancy as well as allowing the opportunity for earlier and more effective intervention strategies that will benefit the families and the children born with Down syndrome. The significant impact of these decisions highlights the role of communication between healthcare providers and parents as those interactions may increasingly determine what kinds of people we will have in the future and how we as a society view and address disability.
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Zachary P. Hart
Department of Communication
Northern Kentucky University
Highland Heights, KY