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THE EXPERIENCE OF GENETIC COUNSELORS WORKING

WITH PATIENTS FACING THE DECISION OF PREGNANCY

TERMINATION AFTER 24 WEEKS GESTATION

A Thesis Presented to the Faculty of California State University, Stanislaus

In Partial Fulfillment of the Requirements for the Degree of Master of Science in Genetic Counseling

By Rachel Noel Aguallo Graziani June 2013

CERTIFICATION OF APPROVAL

THE EXPERIENCE OF GENETIC COUNSELORS WORKING WITH

PATIENTS FACING THE DECISION OF PREGNANCY TERMINATION

AFTER 24 WEEKS GESTATION

by Rachel Noel Aguallo Graziani

Signed Certification of Approval Page is on file the University Library

Dr. Janey Youngblom, PhD Date Professor of Genetics, CSU Stanislaus

Laurie Nemzer, MS, CGC Date Genetic Counselor, Oakland Kaiser Permanente

Dr. Jennifer Kerns, MD, MS, MPH Date Assistant Professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences, UC San Francisco

DEDICATION

This project is dedicated to the intelligent, passionate, strong women of

ACCESS Women’s Health Justice (staff, volunteers, and callers) for opening my eyes to the barriers to true reproductive freedom and the importance of fighting for women’s rights, health, justice, and dignity. Trust women.

This project is dedicated to my parents, who provided me with endless support and encouragement in my return to graduate school, and, more importantly, the genetic basis to survive the experience and excel.

ACKNOWLEDGEMENTS

Thank you to the many wonderful friends who assisted in the completion of this project and degree, specifically Jenna Guiltinan, Jen Jones, Monalyn Umali, Lisa

Bahn, Dr. Summaira Riaz, Dr. Eileen Lacey, and Dr. Julie Merz Woodruff.

TABLE OF CONTENTS PAGE

Dedication...... iv

Acknowledgements...... v

List of Tables ...... vii

List of Figures...... viii

Abstract...... ix

Chapter I. Introduction...... 1

Chapter II. Methods ...... 5

Study Design and Participants ...... 5 Data Analysis...... 6

Chapter III. Results ...... 8

General Descriptives...... 8 Understanding of Abortion Law ...... 14 Understanding of Abortion Procedures ...... 15 Direct Involvement with Patient Care ...... 17 Thematic Analysis: Ethical and Personal/Emotional Concerns ...... 20

Chapter IV. Discussion/Conclusion...... 26

References...... 34

Appendix

A. Research Survey ...... 40

LIST OF TABLES

TABLE PAGE

1. Characteristics of Survey Respondents...... 9

2. Medical Indications for which Respondents Offered Termination after 24 Weeks Gestation ...... 11

3. Respondents’ Offering of Termination after 24 Weeks Gestation ...... 13

4. Respondents’ Understanding of Abortion Law (Roe v. Wade) after 24 Weeks Gestation in the US...... 15

5. Respondents’ Understanding of Abortion Procedures...... 17

6. Respondents’ Ethical and Personal/Emotional Concerns...... 20

vii

LIST OF FIGURES

FIGURE PAGE

1. Medical Indications for Offering Termination after 24 Weeks Gestation...... 12

2. Respondents’ Understanding of Abortion Law after 24 Weeks Gestation...... 14

3. Respondents’ Understanding of Abortion Procedures...... 16

4. Patient-related Barriers to Accessing Third-trimester Abortion Services, as Reported by Respondents ...... 19

viii

ABSTRACT

Prenatal genetic counselors are health care professionals that counsel women making reproductive decisions such as termination for fetal anomaly. Little is known about the experience and practices of prenatal genetic counselors working with women that have the option of termination after 24 weeks gestation. General genetic counseling practice patterns, including indications for which termination is offered and types of abortion care services that are coordinated by genetic counselors, are identified.

Respondents’ self-assessments of understanding of abortion law and procedures are reported. Ethical, personal, and emotional concerns of the genetic counselor regarding termination after 24 weeks gestation are revealed. Examining the distinct experience of genetic counselors working with these patients will allow genetic counselors to be better prepared to cope with similar situations and develop more effective means of assisting patients. This information could provide a basis for further research into the patient experience and conceivably create a framework for genetic counselor and patient coping strategies.

CHAPTER I

INTRODUCTION

Genetic counselors are masters-prepared professionals who work with women who decide to terminate pregnancies due to genetic and medical anomalies at various gestational ages throughout the pregnancy. Because genetic counselors work with women and families making these difficult decisions, it is imperative to support reproductive freedom and provide the medical information and the options that are available for the patient. The National Society of Genetic Counselors (NSGC), the largest organized association of genetic counselors with over 2700 active members

(NSGC PSS 2012), has a position statement on reproductive freedom: “The NSGC, as an organization, publicly supports a woman’s right to reproductive freedom, including her right to prenatal diagnosis and access to safe and legal abortion”

(Adopted 1987) (NSGC Position Statements 2013). The NSGC also has a position statement on informed consent: “The NSGC supports an individual’s right to full disclosure of all appropriate medical options regarding reproductive testing and management of genetic diseases and birth defects. It is the care provider’s responsibility to provide effective communication of all available options and to obtain informed consent for procedures involving risk to the individual or fetus.”

(Adopted 1987) (NSGC Position Statements 2013).

In the United States, a woman may have an abortion in the third trimester based on the medical judgment of her attending physician (Roe v. Wade 1973). The third

2 trimester of a pregnancy can be approximated to start at week 25 and is a stage at which a fetus may be viable with or without medical intervention (Hack and Fanaroff

1989; Chervenak and McCullough 1997). Legally, the Court has declared viability as a medical concept and it is the judgment of the physician that determines the viability of the fetus (Planned Parenthood of Central Missouri v. Danforth 1976). States may not restrict abortions that are necessary to preserve the life or health of the mother

(Roe v. Wade, 1973), which includes physical and mental health. Forty-one states have set gestational limits after which abortion is prohibited, with the exception of the necessary protection of the woman’s life or health (Guttmacher Institute 2013, 1).

Often this specified point in pregnancy is at fetal viability. In concordance with the law, a recent study of members of the Society of Maternal Fetal Medicine found that

93% of MFM specialists believe that the decision should be between the patient and her doctor (Jacobs, in review). While the role of the genetic counselor is to make every reproductive option available, it is unknown whether genetic counselors have a solid understanding of the law as it pertains to pregnancies after 24 weeks.

To date, there is very little literature on abortion after 24 weeks gestation and no literature has been written on the role of the genetic counselor in providing the option. Outside of the United States, researchers and hospitals have documented the medical indications that warrant an abortion after 24 weeks. Medically necessary reasons for abortion after 24 weeks may pertain to the health of the mother but often involve the health of the fetus. Studies from Israel, France, and Holland found that the types of fetal abnormalities that lead to abortion after 24 weeks include anencephaly,

3 skeletal abnormalities, severe intrauterine growth restriction, and severe chromosomal abnormalities (Barel et al. 2009; Drummond et al. 2003; Bosma et al. 1997), conditions in which the fetus is either unlikely to survive or have a severely compromised quality of life. Other international studies have identified the situational reasons that the termination was performed after 24 weeks rather than earlier in the pregnancy. One reason is that the fetal prognosis is unclear, therefore necessitating a more thorough evaluation to avoid unnecessary termination in the first or second trimester (Dommergues et al. 1999). Other events that lead to pregnancy termination in the third trimester are a lack of early prenatal screening, parents taking time to make decisions about testing, and anomalies that developed later on in the pregnancy

(Barel et al. 2009; Dommergues et al. 1999).

It can be presumed that similar situations occur in the United States. There were approximately 1.21 million abortions in the United States in 2008, according to the Guttmacher Institute; only 1.5% were performed after 21 weeks (Guttmacher

Institute 2011, 2). Beyond 24 weeks, the numbers are not officially reported but are assumed to be very small. The topic remains highly controversial and physicians have outlined an ethical framework with which to manage pregnancies complicated by medical anomalies and to counsel women on termination (Chervenak et al. 2003).

This ethical framework coincides with the law: a termination in the third trimester is ethically justified if the diagnosis of the fetus is not compatible with survival or, in some cases, short-term survival with an absence of cognitive development according to the anomaly, and this diagnosis is certain (McCullough and Chervenak 1994).

However, a study has shown that only 61% of maternal fetal medicine specialists believe that MFMs concur on what constitutes a lethal anomaly (Jacobs, in review); this lack of concordance on lethality further complicates a difficult situation. A qualitative study found that both parents and health professionals recognize third- trimester abortion as a legitimate clinical procedure, and the procedure is conceptualized as a difficult but necessary intervention (Graham et al. 2009). The complexity and ethical dilemmas of the procedure necessitates professional support to and counseling of the patient (Gagin et al. 2001). It is unclear how and when this information and the option to terminate are presented to the patient and who presents the information. Considering their professional responsibilities, prenatal genetic counselors are often a primary health care provider during this situation.

This purpose of this study is to examine the experiences of genetic counselors working with patients deciding whether to undergo this procedure. The novel data gathered by this study provides insight into circumstances that are not entirely unusual yet rarely discussed. A termination after 24 weeks gestation is a complex choice for the patient, and this study aims to uncover the medical indications that lead to that decision, the proportion of genetic counselors that have offered the option, genetic counselors’ level of understanding of abortion law and procedures, and the emotional and ethical concerns of the genetic counselor. Given the unique position of genetic counselors to counsel patients around this decision, this study elucidates current clinical counseling practices as they relate to abortion after 24 weeks gestation.

CHAPTER II

METHODS

Study Design and Participants

To address the experience of genetic counselors working with patients who have the option of termination after 24 weeks gestation, a survey was designed which focused on general genetic counseling practice patterns for and understanding of abortion after 24 weeks. Participants were recruited utilizing the Student Research

Survey Program of the National Society of Genetic Counselors in February of 2013.

An email was sent out to 2815 members of the National Society of Genetic

Counselors (NSGC), which includes students as well as practicing professionals.

According to the NSCG Professional Status survey, 29% of the practicing members are currently specializing in prenatal genetic counseling, which gives a high estimation of 816 prenatal genetic counselors (NSGC PSS 2012). The email contained information regarding the purpose of the study, an invitation to participate and a link to an online version of the study. Genetic counselors were asked to fill out the survey only if they had practiced prenatal counseling at any point in their career; genetic counselors who had not practiced prenatal counseling did not fit inclusion criteria and were not included in the study. To ensure privacy, the surveys were completely anonymous and no identifying information was collected or transmitted via email from the respondents.

The survey consisted of eighteen questions. The first five questions were about demographics (including gender, age, years in prenatal practice, state location, and religious affiliation) and the remaining thirteen questions addressed experiences working with patients who have had the option of abortion after 24 weeks and self- assessment of knowledge regarding abortion law in the US and abortion procedures.

Respondents were asked if they had ever offered the option of abortion after 24 weeks and, if so, the indication for the abortion. They were asked who discusses this option within their workplace. Open-ended questions gave respondents the opportunity to comment on any ethical, emotional, or personal concerns they have regarding this subject. This study was approved by California State University, Stanislaus

Institutional Review Board

The online survey was administered through Research Electronic Data

Capture (REDCap), a secure web application designed to support data capture for research studies; the data were collected in a centralized database. Respondents submitted their answers online. The survey program did not track their email addresses. The survey took approximately 5 to 15 minutes and the respondent was able to close and return to the survey at any time. The survey remained open for thirty days following the initial invitation.

Data Analysis

Data was analyzed using IBM SPSS Statistics Version 20. Descriptive statistics, including frequencies, means, medians, standard deviations, and standard errors were calculated for demographic variables. Independent t tests and Chi Square

7 bivariate analyses were used to analyze predictors for offering the option of abortion after 24 weeks gestation. Bivariate analyses were used to test the relationships between the demographic variables and understanding of abortion law and procedures. A p-value of less than 0.05 was considered statistically significant.

CHAPTER III

RESULTS

There were 169 respondents to the survey. One respondent reported not having practiced as a prenatal genetic counselor and was excluded, leaving a final sample of 168 respondents. Using the estimation of 816 prenatal genetic counselors, this gives a conservative estimated response rate of 20.6%.

General Descriptives

Descriptive statistics are presented in Table 1, including age, geographic location, gender, years in practice, and religion. Age of respondents ranged from 24 to 63 years old, with a mean age of 37.1 years. Respondents represented 32 states, which were further divided into regions for analysis. Each state was categorized into a region (West, South, Northeast, or Midwest) based on the regions listed in the United

States Census Bureau (U.S. Census). Over one-third of the respondents were from the

West; the rest were equally distributed between the Northeast, Midwest, and South.

Years in practice in prenatal genetic counseling ranged from less than one year to more than 30 years, with a median of 6.25 years. For religious affiliation, the most common response was non-Catholic Christian, (33.3%), while Catholic and “no religion” were the next two most commonly reported affiliations.

Table 1. Characteristics of Survey Respondents

Characteristic N (%)* Age, mean (SD) 37.1 (SD = 9.8) Geographic location Total 156 West 56 (35.4) Northeast 35 (22.2) Midwest 34 (21.5) South 31 (19.6) Gender Total 166 Female 162 (97.6) Male 4 (2.4) Years in practice, median (std error) 6.25 (0.6) Religious affiliation Total 165 Christian, non-Catholic 55 (33.3) Catholic 27 (16.4) No religion 22 (13.3) Other** 21 (12.7) Jewish 15 (9.1) Atheist and/or agnostic 13 (7.9) Decline to state 12 (7.3) *Or mean (sd) or median (std error) where appropriate **Respondents chose the option “Other” and did not provide comment or description

All genetic counselors reported being aware that third-trimester abortion services existed. A number of respondents specifically referenced Boulder Abortion

Clinic in Boulder, Colorado. Services in New Mexico, Kansas (as a past site), and

“out of state” or a “neighboring state” were also mentioned.

Offering the option of abortion after 24 weeks is quite common in practice, with 141 (84.4%) of the respondents reporting they have offered the option, while just

26 (15.6%) have not. When asked the reasons that they had not offered the option, 21

(75.0%) reported not encountering the situation in their practice, 5 (17.9%) reported that it is not a feasible option for their patients, 1 (2.4%) did not know it was an

10 option, and 1 (2.4%) reported not being comfortable with the option. Of the respondents who had offered the option, some provided specific descriptions of medical indications. Descriptions are listed in Table 2. Some medical indications can be included in more than one category and respondents were able to select multiple categories. The most common medical reason for offering this option to patients was for lethal anomalies (n=121) (Figure 1).

Table 2. Medical Indications for which Respondents’ Offered Termination after 24

Weeks Gestation

Lethal Anomalies Anencephaly Acrania Potter sequence Renal agenesis Chromosomal Abnormalities Trisomy 21 Trisomy 18 Trisomy 13 Triploidy Unbalanced translocation Chromosome deletion Genetic Disorders Fragile X Cystic fibrosis Alpha thalassemia Polycystic kidney disease Tuberous sclerosis Lesch Nyhan syndrome Skeletal Dysplasia Thanatophoric dysplasia Skeletal anomalies Cloverleaf skull Variable or Uncertain Significance Microdeletion with variable expression Spina Bifida Arthrogryposis Heterotaxy Ectopia cordis Renal abnormality Diaphragmatic hernia Severe hydrocephaly Severe brain anomalies Thoracic myelomeningocele Intestinal volvulus Hydranencephaly Maternal Health Maternal mental health Unwanted pregnancy Incest

Figure 1. Medical Indications for Offering Termination after 24 Weeks Gestation

Other (n = 8)

IUGR (n = 9)

Maternal Health (n = 18) Variable or Uncertain Significance (n = 50) Skeletal Dysplasia (n = 51)

Genetic Disorders (n = 56) Medical Indication Chromosomal Abnormalities (n = 89)

Lethal Anomalies (n = 121)

0 50 100 150 Number of Respondents (N = 142)

Age, years in practice, religious affiliation, and understanding of law or procedures were not found to be significant predictors of offering the option.

Geographic location approached significance (p = 0.08), with the West having the most respondents who have offered termination after 24 weeks (94.6%) (Table 3).

Table 3. Respondents’ Offering of Termination after 24 Weeks Gestation

Characteristic Have offered Have not offered p-value termination after termination after 24 weeks 24 weeks gestation gestation N (%)* N (%)* Age, mean (SD) 37.3 (10.0) 35.7 (8.9) 0.5

Geographic location, N (%) West 53 (94.6) 3 (5.4) 0.08 Northeast 26 (76.5) 8 (23.5) Midwest 29 (80.6) 5 (19.4) South 25 (83.3) 5 (16.7) Years in practice, mean (SD) 9.6 (8.4) 8.6 (7.5) 0.6 Religious affiliation, N (%) Christian, non- Catholic 47 (85.5) 8 (14.5) 0.3 Catholic 23 (85.2) 4 (14.8) No religion 18 (81.8) 4 (18.2) Other 19 (90.5) 2 (9.5) Jewish 14 (93.3) 1 (6.7) Atheist and/or agnostic 8 (61.5) 5 (38.5) Decline to state 10 (83.3) 2 (16.7) Understanding of abortion legislation after 24 weeks Understand very well or 36 (83.7) 7 (16.3) 0.9 understand well Some understanding or 106 (84.8) 19 (15.2) no understanding Understanding of induction delivery procedure Understand very well or 86 (84.3) 16 (15.7) 1.0 understand well Some understanding or 54 (84.4) 10 (15.6) no understanding Understanding of dilation and evacuation procedure Understand very well or 91 (84.3) 17 (15.7) 0.5 understand well Some understanding or 50 (87.7) 7 (12.3) no understanding *Or mean (sd) where appropriate

Understanding of Abortion Law

When asked their level of understanding of abortion law after 24 weeks gestation in the United States (Roe v. Wade), 168 genetic counselors responded. Of these responses, over half of respondents reported having some understanding of abortion law (58.3%), while very few reported to understand the law very well (7.7%)

(Figure 2).

Figure 2. Respondents’ Understanding of Abortion Law after 24 Weeks Gestation

No Understanding (n = 27)

Some Understanding (n = 98)

Understand Well (n = 30)

Level of Understanding Understand Very Well (n = 13)

0 20 40 60 80 Percent of Respondents (N = 168)

Understanding of abortion law after 24 weeks was collapsed into two categories: understand well or very well (n = 43, 35.6%) and some or no understanding (n = 125, 74.4%). Age, years in practice, and religious affiliation were not significant predictors of understanding of abortion law. However, geographic location was a significant predictor of understanding of abortion law (p = 0.03).

Respondents from the South were the most likely to report they understand the law well or very well (40.0%), while respondents from the Northeast were the least likely to report they understand the law well or very well (8.8%) (Table 4).

Table 4. Respondents’ Understanding of Abortion Legislation (Roe v. Wade) after 24

Weeks Gestation in the US

Characteristic Understand Some understanding p- well or very or not at all* value well* Age, mean (SD) 38.8 (SD=8.7) 36.5 (SD=10.1) 0.2

Geographic location, N (%) West 17 (30.4) 39 (69.6) 0.03 Northeast 3 (8.8) 31 (91.2) Midwest 9 (25.0) 27 (75.0) South 12 (40.0) 18 (60.0)

Years in practice, mean (SD) 10.7 (8.1) 9.1 (8.3) 0.3

Religious affiliation, N (%) Christian, non- Catholic 17 (30.9) 38 (69.1) 0.4 Catholic 6 (22.2) 21 (77.8) No religion 4 (18.2) 18 (81.8) Other 8 (38.1) 13 (61.9) Jewish 4 (26.7) 11 (73.3) Atheist and/or agnostic 1 (7.7) 12 (92.3) Decline to state 2 (16.7) 10 (83.3) *Or mean (SD) where appropriate

Understanding of Abortion Procedures

Respondents had a better understanding of the procedures. Of the 166 genetic counselors that reported their level of understanding of the induction delivery procedure, 43 (25.9%) understand the procedure very well and 59 (35.5%) understand the procedure well, while 61 (36.7%) have some understanding and 3 (1.8%) do not understand the procedure. Reported understanding of the dilation and evacuation

16 procedure was slightly better. Of the 165 responses, 43 (26.1%) understand the procedure very well, 65 (39.4%) understand the procedure well, 56 (33.9%) have some understanding of the procedure, and just one respondent (0.6%) had no understanding of the procedure. (Figure 3).

Figure 3. Respondents’ Understanding of Abortion Procedures

No Understanding

Some Understanding Dilation and Evacuation Understand Well Procedure Induction Delivery Procedure

Level of Understanding Understand Very Well

0 10 20 30 40 50 Percent of Respondents

Understanding of the induction delivery procedure and the dilation and evacuation procedure were collapsed into two groups: understand well or very well and some or no understanding. Geographic location and religious affiliation did not significantly predict respondents’ understanding of either procedure. Age was found to significantly predict understanding of the induction delivery procedure (p =0.01), as older reported reporting a better understanding. The number of years in practice did significantly predict understanding of the induction delivery procedure, with the average number of years in practice of respondents that understand the procedure well

or very well at 11.4 versus 6.4 among those who reported some or no understanding

of the procedure (p = 0.00). For understanding of the dilation and evacuation

procedure, years in practice was also found to be a significant predictor (p = 0.003) as

those reporting they understand the procedure well or very well in practice for a mean

of 10.9 years versus 6.9 years among those reporting some or no understanding of the

procedure (Table 5).

Table 5. Respondents’ Understanding of Abortion Procedures

Induction procedure D&E procedure

Characteristic Understand Some or no p Understand Some or no p well or very understanding value well or very understanding value well well N (%)* N (%)* N (%)* N (%)*

Age, mean (SD) 38.6(9.5) 34.6 (10.0) 0.1 38.0 (9.5) 35.4 (10.5) 0.1 Geographic location West 36 (65.5) 19 (34.5) 0.6 41 (74.5) 14 (25.5) 0.5 Northeast 20 (58.8) 14 (41.2) 23 (67.6) 11 (32.4) Midwest 20 (55.6) 16 (44.4) 21 (60.0) 14 (40.0) South 21 (70.0) 9 (30.0) 19 (63.3) 11 (36.7) Years in practice, mean 11.4 (8.6) 6.4 (6.9) 0.00 10.9 (8.4) 6.8 (7.6) 0.003 (SD) Religious affiliation Christian, non Catholic 29 (57.3) 25 (46.3) 0.8 34 (61.8) 21 (38.2) 0.5 Catholic 18 (66.7) 9 (33.3) 18 (69.2) 8 (30.8) No religion 15 (68.2) 7 (31.8) 17 (77.3) 5 (22.7) Other 14 (66.7) 7 (33.3) 15 (71.4) 6 (28.6) Jewish 9 (60.0) 6 (40.0) 8 (53.3) 7 (46.7) Atheist and/or agnostic 7 (53.8) 6 (46.2) 5 (45.5) 6 (54.4) Decline to state 8 (72.7) 3 (27.3) 9 (75.0) 3 (25.0) *Or mean (SD) where appropriate

Direct Involvement with Patient Care

When asked who discusses termination options after 24 weeks with patients,

the overwhelming majority of respondents answered genetic counselors (n = 157,

93.5%), followed by other prenatal care providers such as a perinatologist,

18 obstetrician, or nurse practitioner (n = 105, 62.5%) (results add up to more than one hundred percent because respondents were allowed to choose multiple options). Six

(3.6%) of the respondents reported that the option is not discussed at their workplace.

Of those six, one, from the West, specified that terminations after 24 weeks are not covered by insurance. Another respondent, also from the West, commented, “We don't do much prenatal and I don't think it's ever come up. I know our organization does not provide or cover abortion in any circumstance, so patients would have to go elsewhere and probably pay out of pocket. “ Of the remaining four, two were from

Colorado, one was from Pennsylvania, and one was from New York; they did not provide comments for this question.

Ninety-five of the 167 (56.9%) respondents reported that they had been involved in coordinating third-trimester abortion services. Of the types of services they had coordinated, many respondents described referrals to out-of-state providers such as the Boulder Abortion Clinic. Other types of coordination care included compiling patient packets, sending medical records, coordinating airfare and hotel arrangements, and coordinating funding assistance. Respondents also provided reasons for not coordinating care; these included that it was not a financially feasible option for the patient, the facility did not provide these services, or the patient did not pursue this option.

Respondents were asked their perceptions of barriers that patients face when considering third-trimester abortion services (Figure 4). Over 90% of respondents considered the financial cost of third-trimester abortion to be a barrier to these

19 services, followed by distance to services. Other barriers described by respondents include the patient’s own personal beliefs, family beliefs, dangers to the mother (lack of experienced providers, future conception), and societal beliefs.

A sample quote in response to “other”: “Patients may have to travel long distances at their own expense. Not all doctors support this procedure and will not necessarily even present the option to patients. Family members may be opposed to the procedure and may pressure the patient not to have the procedure.” (Respondent

113).

It is worthy of note that some genetic counselors express frustration in their comments; for example, one respondent said, “Out-of-state options are incredibly expensive. I often feel angry when our 'medicaid' patients would opt for late TOP but they cannot afford it. This is an inequality that infuriates me profoundly.”

(Respondent 38).

Figure 4. Patient-related Barriers to Accessing Third-trimester Abortion Services, as

Reported by Respondents

Other (n = 32) Perspectives of other health care professionals (n = 65) Informational (misinformed/uninformed) (n = 68) Religious beliefs (n = 128)

Distance (n = 145)

Financial (n = 152)

0 10 20 30 40 50 60 70 80 90 100 Percent of Respondents (N = 168)

Thematic Analysis: Ethical and Personal/emotional Concerns

Respondents were given the opportunity to comment on any ethical concerns and personal/emotional concerns they may have regarding abortion after 24 weeks.

Among all respondents, 107 (63.7%) provided at least one comment. Of the 95 respondents who provided ethical concern comments, 21 (22%) reported that they have no concerns. Of the 87 respondents who provided personal/emotional concern comments, 14 (16%) reported that they have no concerns. Responses were classified into domains and categories, with overlap between the ethical and personal concerns

(Table 6). Numbers following quotes refer to the assigned de-identified participant number.

Table 6. Respondents’ Ethical and Personal/emotional Concerns

Domain Category N Example Termination Patient’s 47 “I do not support third trimester abortion for fetuses that

21 limitations decision 47 would be born alive at that time. However, I understand that this decision is ultimately the patient's to make if it is deemed legal. The Catholic hospital that I work at would have more ethical concerns than I would personally.” - 25

“Yes, but part of prenatal counseling is being able to support the patient in the decision that is best for them, even if it is not a decision that I would make.” - 30

“Patient's decision, my concerns are not relevant” – 125

“I STRONGLY believe that it is the right of a woman to terminate any pregnancy, at any time.” -140

“I think people should stay out of it unless they have had to make this difficult decision themselves. It is so easy to judge others.” - 169

Lethal and/or 25 “Third trimester abortion should be reserved for lethal maternal conditions or to preserve the life and health of the mother.” – health 14

“I personally do not think third trimester abortions should be an option unless the anomaly is lethal. However, I believe women should have the right to make decisions regarding their own bodies and health. I hope that they would be counseled appropriately to at least consider other options.” - 16

“I think that this should be used only on severe or lethal anomalies. I think that if a baby has a stroke and no brain tissue above brainstem (or any severe anomaly) that we cannot say that it is lethal, the baby could breath on its own and survive in a vegatative [sic] state.” -131

“I would find it difficult to counsel a patient wanting a late term abortion for elective reasons (i.e. reasons other than lethal or severe fetal condition or life-threatening maternal condition).” - 145

“In cases of nonlethal conditions and minimal disability (that do not jeopardize the life of the mother) I do not endorse discussing third trimester termination.” - 162 Grey zone of 21 “I think this service should be available only for patients with abnormalities fetal abnormalities. However, there is too much gray area in and viability commenting on whether all abnormalities should qualify versus just the more severe ones because different patients may perceive the severity of the anomaly differently. Who has the power to say 'which anomaly is severe enough to ethically offer termination in 3rd trimester and which anomaly isn't'?” – 59

“I think it is very difficult to know where to draw a definitive

line - if you accept any abortion for any reason (including 'to save the life of the mother'). Without the context of a specific case, I would generally be against termination after viability... however, every case I have been involved in is much more complex.” – 66

“I think that in the case of a viable fetus, there is a fine line between abortion and infanticide.” – 80

“I have concerns when late TAB is performed for unclear diagnoses (VUS etc).” -107

“Typically the circumstances we are facing as geneti [sic] counselors involved with offering/discussing 3rd trimseter [sic] abortion are unexpected/found out late. It is sometimes difficult, however, to determine which patients should be offered this option as it is an area up for interpretation as to 'severity' of the prognosis for the condition discovered late.” - 111 Difficult 22 “A tragic decision for any mother. And no decision is 'wrong' decision for when a woman makes an informed decision for herself, patient considering her emotional, financial, and social circumstances at that time.” – 9

“It is difficult enough for these patients to terminate a wanted pregnancy this late, but to have to endure protesters when entering and leaving the clinic is despicable.” - 37

“It is a very difficult decision that no patient decides on lightly. The few patients that I have had who have decided to have a later termination have usually also been receptive of referrals to a psychologist first to discuss their emotional and personal concerns.” – 72

“I believe in a women's right to choose, and know that any women facing such a decision does not make it lightly.” - 74

“Emotional attachment to a pregnancy seems to increase throughout pregnancy for many families. Grieving a later abortion is slightly different for families than grieving an earlier abortion.” -129

“I do not think that this option if considered as a frivolous decision by any women that I have met. I do worry about the stress of the decision and its effects on the families.” - 140 Genetic Discomfort 21 “I think it's an ethically uncomfortable situation, but so is any counselor with discussion of termination.” – 29 difficulties termination “I feel uncomfortable with third trimester abortion in most circumstances. If the diagnosis is lethal I feel less uncomfortable with it. But if a patient receives a prenatal diagnosis of something like Down syndrome or spina bifida late in pregnancy I would feel uncomfortable discussing

termination. Once a pregnancy is viable, I find it harder to consider it a 'termination of a pregnancy' rather than killing a baby. I understand that third trimester terminations are uncommon and that the circumstances are unusual. But I do feel uncomfortable with them.” – 30

“I am uncomfortable with all abortion. Third trimester termination seems especially cruel. Unfortunately, abortion is neither simply a 'woman's choice' or the 'right to life.' The two lives are entwined -- literally at the placenta. A change to one life impacts the other. It's complicated. However, by the third trimester, terminating for any reason other than the life of the mother just seems wrong. I have offered it to patients, but I didn't feel right doing so.” - 45

“Yes. It is disgusting and horrible. I hating [sic] being involved, but it is an option that patients have, and thus it must be presented to them as an option. I stay out of it as much as possible without hampering their ability to get services they want. I wish it were never an option, but that is not my decision.” - 146 Emotional 8 “I do get emotionally involved in these cases and it does involvement sometimes upset me when patients are very far along in the pregnancy. It is a very emotional situations [sic]. However, I do feel that it is ultimately the patient's decision.” – 114

“Every patient I've seen who has considered or chosen a third trimester abortion has stayed with me and has been the most emotional session I've had. It is the worst decision these women have to make and I hate that they are subjected to others' judgment.” -130

“Sure - I think there are very significant emotional issues for both the provider and the patient.” - 146 Access 11 “I do find it difficult to explain and to understand that patients Barriers carrying a fetus with a lethal anomaly are still constrained by the abortion restrictions that apply to everyone else.” – 33

“only that i feel it is more difficult for my patients given the cost, distance, and social stigma.” - 48

“It should be an insured medical event. It is horrifying that women who cannot afford this cannot have the procedure.” - 128

“I personally believe that it does need to be offered in more locations. There are many times for maternal or fetal reasons this needs to be available.” - 165

Domain 1: Termination Limitations

Respondents’ provided comments voicing varying concerns on a range of possible limitations of termination, from support for patients’ autonomous decisions to strict medical indication limitations. These comments were divided into three categories.

Category 1: Patient’s decision (n = 47)

Many genetic counselors made comments proclaiming that it is the patient’s decision and supporting patient autonomy. Some of these responses directly address an adherence to the legal reproductive rights for women; this factor sometimes influenced their beliefs about limitations.

Category 2: Lethal/maternal health limitations (n = 25)

Some genetic counselors were in support of termination after 24 weeks only for lethal conditions or in cases of risks to maternal health.

Category 3: Grey zone of abnormalities and viability (n = 21)

Some respondents were concerned with a “grey” zone of fetal abnormalities when it is difficult to determine severity or viability. Some respondents commented on the importance of the point of viability when considering an abortion after 24 weeks, but noted that this is not always easy to determine and some conditions have unclear prognoses.

Domain 2: Difficult decision for patient (n = 22)

Respondents addressed the patient experience. Abortion after 24 weeks gestation is thought to be a particularly difficult decision for a patient to make.

Several respondents had concerns about the emotional impact that abortion after 24 weeks has on patients and families.

Domain 3: Genetic counselor difficulties

Some respondents expressed difficulties with abortion after 24 weeks; these difficulties were classified into discomfort with the option and emotional involvement with the patient’s situation.

Category 1: Discomfort with termination (n = 21)

A few counselors commented on their discomfort with termination. Levels of discomfort ranged from slight discomfort with abortion after 24 weeks to high discomfort for abortion at any point during gestation.

Category 2: Emotional involvement (n = 8)

Some respondents commented that they felt emotional involvement with and reactions to their patients making the decision to termination a pregnancy after 24 weeks gestation..

Domain 4: Access barriers (n = 11)

Patients’ access to these services, including insurance coverage, funding, and service location, was a concern for some respondents.

CHAPTER IV

DISCUSSION/CONCLUSION

By exploring the experiences of genetic counselors working with pregnant patients, the results from this survey show that offering the option of abortion after 24 weeks gestation is not uncommon in the prenatal genetic counseling practice. Prenatal genetic counselors from all across the United States responded to the survey, with representation from four geographic regions. The response rate and demographic characteristics are similar to other recent publications on surveys of genetic counselors (Balcom et al 2013; Enns et al 2010) and the mean age of respondents in this study is similar to the respondents to the NSGC professional status survey, which found the majority of respondents to be in the age group of 29 to 39 years (NSGC

PSS 2012). The study findings are important given the paucity of literature and information available regarding current genetic counseling practices for termination after 24 weeks.

This study documents that abortion after 24 weeks gestation is indeed offered by many prenatal genetic counselors for a wide variety of medical indications. Many specific indications are identified, with the most common being lethal anomalies.

This is not surprising, given that restrictions to termination vary by state and many states limit abortion after 24 weeks to lethal anomalies only (Guttmacher Institute

2013, 3). Also, respondents expressed support and concern for limiting termination after 24 weeks to lethal anomalies only, as reported in the thematic analysis of this

27 study. Some indications fell into more than one category (for example, trisomy 13 may be considered both lethal and a chromosomal abnormality) and some indications have unclear severity or prognosis (for example, “severe” hydrocephaly). The lack of concordance among medical professionals on what constitutes a “lethal” anomaly

(Jacobs, in review) likely contributes to variation in practice among respondents.

There were also indications that are not lethal or severe, for example, trisomy 21.

These indications coincide with indications reported in the literature from outside the

United States (Barel et al. 2009; Drummond et al. 2003; Bosma et al. 1997).

Frequency of each indication and patient uptake remain unclear.

Of the 168 respondents, only 26 (15.6%) reported that they had not offered the option of abortion after 24 weeks, with the most common reason that the respondent had not encountered the situation in their practice. Assuming patients can be affected by any given medical indication, it would be expected that the likelihood of encountering a certain medical indication would increase as one’s years practicing prenatal genetic counseling increase; i.e., a specific indication is more likely to be encountered over time. However, number of years in practice was not found to be a significant predictor of whether or not the respondent had offered abortion after 24 weeks. Perhaps these respondents have encountered certain indications but were unaware that other genetic counselors offered abortion for those indications or disagree on what constitutes “lethal,” “severe,” or “appropriate.” This supports the need for documentation of such indications to increase awareness of genetic

28 counseling practices. Further research on reasons for not offering abortion after 24 weeks gestation is necessary.

All of the respondents claimed to be aware of third-trimester abortion services and the majority had offered this option in practice, yet most respondents report limited understanding of abortion law after 24 weeks gestation. Respondents from the

South were the most likely to report a better understanding of abortion law, perhaps owing to strict abortion laws and limitations (Guttmacher 2013, 1). Although respondents reported a better understanding of abortion procedures, approximately one-third reported only having “some understanding” of abortion procedures. The number of years in practice was found to be a significant predictor, with respondents reporting a better understanding the longer they had been in practice. This is to be expected considering that, over time, the situation may have occurred more often in one’s practice, increasing counseling opportunities.

Interestingly, while a lack of understanding of abortion law and procedures is evident, 93.5% of respondents claimed that genetic counselors are the health care providers responsible for discussing this option with patients and 56.9% of respondents had been directly involved with coordinating care for patients.

Considering this high level of involvement, it should be expected that genetic counselors are knowledgeable in all aspects of abortion after 24 weeks. These findings call for increased education of genetic counselors in abortion law and procedures in order to meet the needs of patients and improve patient care.

Genetic counselors’ experiences working with patients that may choose abortion after 24 weeks gestation provides valuable perspectives on the barriers that patients face. Abortion after 24 weeks gestation is an expensive procedure, typically costing thousands of dollars in addition to possible state-to-state travel (Guttmacher

2013,1; Jones 2006); therefore it is not surprising that 90.5% and 86.3% of respondents reported funding and distance, respectively, to be barriers to accessing these services. Increasing costs with gestational age, distance, and harassment, are documented barriers (Henshaw 1995). Such barriers greatly impact patient care and stratify patients based on resources (Dehlendorf et al 2010). It is in the patient’s best interest that genetic counselors address these barriers and find strategies to increase access, both within the genetic counseling session and as a professional community.

The responses about ethical, personal, and emotional concerns revealed interesting themes. Findings show that genetic counselors are ethically divided on abortion after 24 weeks gestation. There was no uniform agreement on termination limitations; respondents’ perspectives varied widely, from support of women’s rights for any reason, to strict limitations for lethal anomalies, to respondents who are uncomfortable with abortion for any reason at any gestational age. This differs from a study of genetic counselor professional attitudes toward abortion for medical reasons, which were found to be generally permissive professionally (Woltanski, et al 2009).

That study, also of members of the NSGC, did not specify gestational age when asking about attitudes toward abortion. Whether or not these differences in perspectives on termination limitations align with the NSGC position statements on

30 reproductive freedom and informed consent, which include the right to access safe and legal abortion and to disclose all available medical options, is open for further consideration.

One of the main concerns for genetic counselors was the point of viability, a time during gestation in which survivorship and prognosis is not always clear, particularly when a fetus is affected with a medical condition. Respondents seem to struggle with respect for autonomy, beneficence, and justice. These concerns are not unique to genetic counseling. Clinical professionals in perinatal medicine recognize the need for an ethical framework for periviability (Chervenak et al 2007; Higgins et al 2005; Kandel and Merrick 2003) because of the ethical, medical, and legal aspects of viability, and the American College of Obstetricians and Gynecologists have described potential consequences and outlined practice guidelines to manage pregnancies at the threshold of viability (ACOG Practice Bulletin 2002). Genetic counselors may benefit from utilizing a framework and guidelines to cope with their ethical concerns.

It is clear that some respondents’ find this situation to be difficult and highly emotional, for both the patient and the genetic counselor. The heightened emotional involvement and difficulty of decision-making emphasize the need for a solid understanding of all options that are available to the patient. Based on respondents’ reported understanding of law and procedures, it appears genetic counselors are uncomfortable with their knowledge of important aspects of abortion after 24 weeks.

Improving knowledge base will enhance counseling skills by allowing for greater

31 focus on patient’s needs and ability to provide anticipatory guidance during an emotionally difficult situation.

Some respondents mentioned access barriers as part of their ethical and personal/emotional concerns. Genetic counselors are trained to assess the needs of the patient therefore it is not surprising that respondents expressed frustration and anger at the lack of services and discrepancies in health insurance coverage and care. These types of access barriers to abortion have previously been explored by the public health community (Henshaw 1995) and difficulties with making arrangements caused delay more often for poor women (Finer et al 2006). Considering first- and second- trimester abortions cost in the hundreds to low thousands of dollars range and are more likely to be covered by health insurance (Jones et al 2008) in comparison to third-trimester abortion which costs a few thousand dollars, it could be assumed that the financial barriers are even greater for terminations after 24 weeks gestation and affect a larger proportion of women in this situation. At this late stage in pregnancy, delay for any reason will have a large impact on pregnancy outcome. These important reproductive freedom issues are noted by respondents and need further consideration within the community of genetic counselors.

A limitation to this study is that respondents were self-selected which may have lead to a response bias towards genetic counselors that have an increased interest in this topic or have worked with patients that have made the decision to have an abortion after 24 weeks gestation. The results may not fully reflect the views and experiences of all prenatal genetic counselors.

Another limitation is that, because respondents provided a self-assessment of level of understanding of third trimester abortion law and procedures, their true understanding may differ from their self-perceived understanding. Respondents may have been reluctant to share ignorance or overstate knowledge.

This study suggests that the majority of prenatal genetic counselors have worked with patients that face the decision of termination of pregnancy after 24 weeks gestation and there is variation in practice. Genetic counselors are divided on termination limitations and appropriate indications for which to offer termination.

The NSGC takes a position of support of women’s reproductive freedom and responsibility for providing all available medical options; however, the findings of this study indicate that genetic counselors are not necessarily in agreement about appropriate reproductive options. It is unclear how extensively this affects genetic counseling sessions. Genetic counselors also vary in their self-perception of understanding of abortion law and procedures. A notable lack of understanding indicates the need for increased education in abortion law and procedures. Genetic counselors were found to be most concerned with termination limitations, the difficulty of the decision and situation for their patients, their own discomfort with termination, and access barriers. A qualitative study interviewing individual genetic counselors may be useful to understand variation in perspectives, perceptions, and practice. Further research into specific genetic counseling experiences with abortion after 24 weeks gestation could explore how or if genetic counselor differences affect the patient’s decision.

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APPENDIX

APPENDIX A

RESEARCH SURVEY

The Experience of Genetic Counselors Working with Patients Facing the Decision of Late Termination of Pregnancy

To be completed by: Genetic Counselors who have worked in the prenatal specialty, either currently or at any point in her or his career.

Directions: Please answer the following questions as completely as possible. Feel free to extend answers in the space provided. If you have any questions or concerns, please do not hesitate to contact Rachel Graziani at (707) 290-4236 or [email protected].

Thank you again for your participation.

1. Is abortion available in your state? a. Yes, up to 12 weeks b. Yes, up to 18 weeks c. Yes, up to 24 weeks d. Yes, at any time during pregnancy e. Abortion is not available in my state. f. Other: ______

2. Are you aware of third trimester abortion services? a. Yes b. No Comments:______

3. Have you ever offered the option of abortion to a patient whose pregnancy has passed 24 weeks gestation, or would be past 24 weeks at time of the procedure? a. Yes b. No

4. If yes, what were the medical reasons for providing this option? Indicate all that apply: a. Lethal anomalies (for example, anencephaly) b. IUGR

42 c. Skeletal dysplasia d. Chromosomal abnormalities e. Genetic disorders f. Conditions with a variable or uncertain significance g. Maternal health - please describe: h. Other -please describe: Comments:______

5. If no, what were the reasons? Indicate all that apply: a. This situation has not occurred in my practice b. It is not a feasibly accessible option for the patient c. I did not know it was an option d. I am not comfortable with the option e. Other - please describe: Comments:______

6. Have you been involved in helping to coordinate third trimester abortion care for a patient (ie, finding a clinic/doctor that does the procedure, helping with insurance, finding financial resources, follow up, follow up supportive counseling)? a, Yes - please describe: b. No Comments:______

7. In your workplace, who discusses late termination options with your patients? a. Genetic counselors b. Prenatal care provider (e.g., perinatologist, obgyn, nurse practitioner, etc.) c. This option is not discussed in my workplace d. Other -please describe: Comments:______

8. How would you best describe your understanding of the legislation (Roe v. Wade) regarding abortion after 24 weeks gestation? a. I understand the legislation very well b. I understand the legislation well c. I have some understanding of the legislation

43 d. I do not understand the legislation Please provide a brief description of your understanding of Roe v. Wade:______

9. How would you best describe your understanding of the induction delivery procedure? a. I understand the procedure very well b. I understand the procedure well c. I have some understanding of the procedure d. I do not understand the procedure Please provide a brief description of your understanding of this procedure:______

10. How would you best describe your understanding of the dilation and evacuation procedure (D and E)? a. I understand the procedure very well b. I understand the procedure well c. I have some understanding of the procedure d. I do not understand the procedure Please provide a brief description of your understanding of this procedure:______

11. What do you perceive are barriers that your patients have come up against when considering third trimester abortion? Indicate all that apply. a. Financial b. Distance c. Perspectives of other health professionals d. Informational (ie, patient is uninformed or misinformed) e. Religious beliefs f. Other - please describe: Comments:______

12. Do you have any ethical concerns regarding third trimester abortion that you would like to comment on?

13. Do you have any emotional or personal concerns regarding third trimester abortion that you would like to comment on?

14. What is your gender? a. Female b. Male

15. What is your age? __

16. How many years have you worked in prenatal genetic counseling? __

17. What state do you live in? ______

18. What is your religious affiliation? a. Christian b. Catholic c. Jewish d. Other ______c. Decline to state