Ethics and the Maternal-Fetal Dyad - Cleveland Clinic

The third annual Bioethics Research Day, held in May, attracted
an even larger crowd than in previous years. Richard Sharp,
PhD, Director of Bioethics Research, attributes that to a couple
of twists on this year’s program, including keynote speaker
Carol Gilligan, PhD. Dr. Gilligan is a moral development theorist,
psychologist and professor.
“Having Dr. Gilligan speak was a little out-of-the-box for us,”
Dr. Sharp says. “We wanted to have someone who could provide
perspective; someone who was not in our field who could see
our strengths and also where we could do better.”
Dr. Gilligan spoke to the crowd of more than 140 about ways
in which women and men develop moral perspectives. Often in
bioethics the focus is on the outcomes of that process, Dr. Sharp
Bio ethics Reflections
A publication of the Cleveland Clinic Bioethics Department | Fall 2011
Largest Research Day Yet Brought Fresh Perspective,
New Faces and Poster Session
says. Dr. Gilligan challenged participants to look at the sources
of a person’s moral beliefs, how men and women develop moral
beliefs and how they are embedded into the culture.
Exploring those things “encourages us to be more self-reflective
about some of the unspoken assumptions that inform our work,”
according to Dr. Sharp.
Bioethics Research Day this year also featured a first-ever
poster session to accommodate the large number of studies
being done in Cleveland Clinic’s Bioethics Department. Fourteen
bioethics research-related posters were displayed. Authors of
the posters included research team members from the Department
of Bioethics at Cleveland Clinic along with collaborators
from Cleveland Clinic, Case Western Reserve University (CWRU)
and University Hospitals, and students from the CWRU bioethics
master’s program.
This year was the first that the Research Day was affiliated
with Cleveland Clinic’s Center for Ethics, Humanities and
Spiritual Care (CEHSC), a collaborative center for bioethics,
spiritual care, medical humanities and neuroethics. The affiliation
with CEHSC brought new faces to the event, particularly
from the clinical departments.
“There was, intellectually, a lot of energy this year because
of CEHSC, our dynamic speaker and the poster session,”
Dr. Sharp says.
He looks forward to a fourth annual event in 2012. Each
Bioethics Research Day is coordinated to take place during
Bioethics Week at Cleveland Clinic.
Research Day Ethics and the Maternal-Fetal Dyad
Staff Announcements and Former Fellows

Dear Colleague,
We hope you enjoy reading the fall 2011 issue of Bioethics Reflections. As you will
discover from our cover story, bioethics research is thriving at Cleveland Clinic.
This year’s Bioethics Research Day, the third annual, drew a record crowd. It
featured a dynamic and iconic keynote speaker, Carol Gilligan, PhD, as well as
a first-ever poster session highlighting current research. We look forward to our
next Research Day in May 2012.
Also in this issue we present the ethical issues involved in decision-making regarding
high-risk pregnancies. Decision-making can be very difficult in such situations,
when the well-being of both mother and baby are directly connected. Ruth Farrell,
MD, staff member in the Department of Bioethics and the OB/Gyn & Women’s
Health Institute, and Jeffrey Chapa, MD, Head of Maternal-Fetal Medicine in
Cleveland Clinic’s OB/Gyn & Women’s Health Institute, weigh in on the topic.
In our feature highlighting the work of former fellows, we talk with Jason Gatliff,
PhD, Integrated Ethics Program Officer at the Louis Stokes Cleveland Veterans
Administration Medical Center and Director of Ethics Consultation in the Center
for Biomedical Ethics at MetroHealth Medical Center in Cleveland. Dr. Gatliff was
a member of the inaugural class in the Cleveland Fellowship in Advanced Bioethics
(CFAB), beginning in 2007 and graduating in 2009.
The Department of Bioethics is pleased to welcome another alumna from that class,
Margot Eves, JD, who recently joined our staff as a regional bioethicist. You can
read more about Margot in our next issue.
We appreciate your interest in Bioethics Reflections and hope you enjoy reading it.
Sincerely,
Eric Kodish, MD
F.J. O’Neill Professor and Chairman,
Cleveland Clinic Bioethics Department
Bioethics Reflections | Fall 2011
Bioethics Reflections provides
news and information from
the Cleveland Clinic Bioethics
Department for our colleagues
across the country.
Eric Kodish, MD
Chairman, Department of Bioethics
Barbara Goulden
Administrator, Department
of Bioethics
Bioethics Staff:
Ruth Farrell, MD
Anne Lederman Flamm, JD
Paul Ford, PhD
Martin Kohn, PhD
Carmen Paradis, MD
Richard Sharp, PhD
Martin Smith, STD
Anthony Thomas, MD
Janicemarie Vinicky, PhD
Kathryn Weise, MD, MA
Christine Harrell
Managing Editor
Irwin Krieger
Art Director
Jade Needham
Marketing

Ethics and the Maternal-Fetal Dyad:
Unique Challenges for Patient and Provider
The ethical challenges that arise in the field of obstetrics are unique
because this field is so different from other areas of medicine.
Medical professionals are responsible for two patients at the same
time: the pregnant woman and the developing fetus. “That’s what
separates obstetrics from other medical specialties; you have to
consider the health of the mother and the baby,” says Jeffrey Chapa,
MD, Head of Maternal-Fetal Medicine in Cleveland Clinic’s OB/Gyn &
Women’s Health Institute. Dilemmas and challenges can arise while
trying to safeguard the well-being of both.
In many instances, there is agreement between what a physician or
midwife recommends for a pregnant woman and what she feels is
an appropriate healthcare plan. But difficulties can arise when the
choices of the pregnant woman do not align with the recommendations
of her healthcare provider or, in the case of high-risk pregnancies,
the multidisciplinary healthcare team. “In such cases, ethics
and ethics consultation plays a key role in patient care,” says Ruth
Farrell, MD, MA, Assistant Professor of Surgery at the Cleveland
Clinic Lerner College of Medicine and a staff member in the Department
of Bioethics and the OB/Gyn & Women’s Health Institute. “The
term ‘maternal-fetal conflict’ does not adequately describe the unique
interaction in the maternal-fetal dyad. This is an ever-changing and
unique state in which the well-being of the mother and the fetus are
intertwined. Conflict introduces the notion that the interests of the
mother and fetus are in direct contest – something that is rarely the
case.” Dr. Farrell says that using the term maternal-fetal dyad instead
more effectively communicates the special state of pregnancy.
New advances in prenatal care can present unique challenges for providers
in balancing the health of the pregnant woman and the fetus.
Examples include procedures performed either during pregnancy
(such as maternal-fetal surgery) or at the time of delivery. Such procedures,
while intended to mitigate the effect of a genetic condition or
developmental abnormalities on the fetus, do carry important risks for
mother and fetus. “Potential conflicts between the provider and the
patient can arise for any procedure, but particularly so when there is
no or scant evidence-based data to demonstrate positive outcomes
with the procedure,” says Dr. Farrell. Debate also can arise when
evidence demonstrates a therapeutic promise for the newborn but serious
medical complications for the mother, as in the case of in-utero
repair of neural tube defects. As technology advances, it’s important
for providers to constantly revisit the consideration of what data are
available about outcomes and how such procedures affect the health
of both mother and fetus.
One example is the EXIT (Ex-utero Intrapartum Treatment) procedure,
a surgical procedure performed on a newborn while it is still attached
to the umbilical cord to maintain uteroplacental gas exchange. The
procedure was developed to reverse tracheal occlusion in severe congenital
diaphragmatic hernia, and has been expanded to treat other
indications such as congenital high airway obstruction syndrome,
large fetal neck masses, and lung and mediastinal tumors.
While the EXIT procedure can be lifesaving for the newborn, it poses
serious short-term and long-term risks for the mother. Like fetal
surgery, the EXIT Procedure has a direct impact on a woman’s reproductive
and overall health. “Any procedure performed on the fetus is
performed on the woman, so she must be able to make an informed
decision about whether the procedure is right for her and her child,”
says Dr. Farrell.
Whether a procedure is experimental or established, informed decision-making
and communication with the patient is critical. “You’ve
got to spend time talking with the patient, especially when explaining
complicated procedures,” says Dr. Chapa. “It’s important to give the
patient detailed information and allow her to choose.”
In addition, Dr. Farrell emphasizes the importance of informed
decision-making. “It is not enough to give the patient a laundry list
of risks and expect her to make a decision. The process of informed
decision- making involves having important data, but also being able
to align that information with personal values and beliefs. As healthcare
providers, we must help our patients make informed decisions
that meet their needs as they are the ones who must carry on after
the delivery.”
Practitioners need to be vigilant in how they frame information so
they don’t bias the patient’s decision in a way that does not meet
her healthcare goals. “Many times, there may be the hope of ‘doing
something’ to try to improve the health of the child. However, in
these instances, there is the risk that information could be framed in
a way that places undue burden on the pregnant women to go ahead
with a procedure. It is vital that healthcare providers present patients
with the scientific evidence, including risks and benefits, the knowns
and the unknowns in a meaningful way and support the woman in
making a decision that reflects her values and beliefs,” says Dr. Farrell.
Sometimes, when a patient is uncertain about a recommended procedure,
Dr. Chapa may refer her for a second opinion. “It may help
the patient to hear another perspective,” he says.
Bioethics Reflections | Fall 2011 clevelandclinic.org/bioethics | Phone: 216.444.8720

When a patient’s choices appear to not be in agreement
with the clinical plan or recommendations, the provider
may uncover the reason by asking questions and getting
to know the patient better. “There may be something the
patient isn’t telling you. You don’t know all the circumstances,”
says Dr. Chapa. When he learned that one of
his patients wasn’t taking her medication because it was
too expensive, Dr. Chapa was able to switch her to a less
expensive formulation.
Dr. Farrell also is an advocate for giving patients the time
and opportunity to gather information and make an informed
decision. “Timing is everything in pregnancy. Each
gestational week brings with it new challenges as the fetus
comes closer to viability and the mother’s body changes in
ways that can make her more susceptible to medical complications
of pregnancy. One of the challenges in obstetrics
is that, in many cases, we don’t have the luxury of time.
While it is critical that patients be prepared to make informed
decisions, we have to recognize that the clock does
not stop ticking because we are in the midst of an ethical or
medical dilemma.”
Former Fellow: Jason Gatliff, PhD
As a professor of ethics at the United States Air
Force Academy in 2006-2007, Jason Gatliff, PhD,
conducted classes on such things as moral issues
regarding decisions to go to war and conduct during
war. He had an interest in military ethics, having
served in both the Air Force and the Army National
Guard. He earned undergraduate, master’s and doctorate
degrees in philosophy and was partial to military
ethics because he was “drawn to the idea that
you could apply philosophy to real world events.”
Dr. Gatliff also lectured on medical ethics, including
such topics as forced anthrax vaccination. He had
developed an interest in medical ethics when he interned at Cleveland Clinic as a
graduate student in 2002. So when the Cleveland Fellowship in Advanced Bioethics
was instituted in 2007, Dr. Gatliff says he “jumped on the opportunity.” He applied
and was accepted as part of the first class.
Though medicine and the military are very different, they do intertwine at times
and are similar in that they both have a strong hierarchy, Dr. Gatliff says. And his
current work is somewhat of a combination of the two. After completing his bioethics
fellowship in 2009, Dr. Gatliff went on to work in his two current positions – as Integrated
Ethics Program Officer at the Louis Stokes Cleveland Veterans Administration
(VA) Medical Center and Director of Ethics Consultation in the Center for Biomedical
Ethics at MetroHealth Medical Center in Cleveland. He splits his time between
the two positions.
Dr. Gatliff says the issues he deals with at each medical center are very similar.
The biggest difference between the two is that there is no pediatric population at the
VA Medical Center. His military background gives him a unique perspective at the
VA where he is the only staff member there whose role is devoted exclusively to
ethics. He works with a large ethics team comprised of caregivers and patient
advocates who support the mission.
Only about 10 of the VA hospitals in the country have paid full-time bioethicists,
Dr. Gatliff says. The position is usually secondary duty for someone on staff. He says
the VA created the position for him when he completed his fellowship and is a direct
result of the relationship he fostered with the VA while going through the fellowship.
At MetroHealth, Dr. Gatliff is part of a team of four ethicists who provide education
and consultation and partake in committee work regarding patient and general issues
that affect the hospital.
Dr. Gatliff says what he enjoys most about what his profession is “the real impact
I have on the patient.”
Bioethics Reflections | Fall 2011

Congratulations to
Our Staff for the
Following Achievements:
Ruth M. Farrell, MD, MA, received the Junior Career Development
Award, Women Faculty of the School of Medicine of Case Western
Reserve University. This enabled her to attend the Harvard Kennedy
School “Women and Power” leadership conference in May.
Dr. Farrell also has been reappointed to the Committee on Ethics
of the American College of Obstetricians and Gynecologists.
Paul Ford, PhD, was selected for a Scholarship in Teaching Award,
Case Western Reserve University School of Medicine 2011, for a
project entitled: “Iterative Mentored Reflection: Progressing Case
Based Teaching of Ethics for Residents” His project was carried
out as part of the 2009-2010 Medical Education Fellowship program
and focused on neurosurgical residents.
Richard Sharp, PhD, has been appointed to the Committee on
Societal, Ethical and Legal Issues of the American College of
Medical Genetics.
Eric Kodish, MD, delivered the 4th Annual Dr. Jose Albernaz
Golden Apple Distinguished Lecture at the Brody School of Medicine,
East Carolina University on Dec. 3, 2010. He also presented
the 19th Annual Wilhelm S. Albrink Memorial Lecture at West
Virginia University on Feb. 15, 2011. Dr. Kodish currently serves
as a member of the Institute of Medicine Committee on Pediatric
Studies.
New Staff:
Welcome Susannah Rose, PhD
We are pleased to announce the appointment
of Susannah Rose, PhD, as Assistant
Staff in the Department of Bioethics in the
Center for Ethics, Humanities and Spiritual
Care. Dr. Rose received her doctorate
in health policy and ethics from Harvard
University in 2010. While studying at Harvard
she received a pre-doctoral fellowship
from the National Institute of Mental
Health (2006-2008), and pre-doctoral
and post-doctoral fellowships at Massachusetts
General Hospital, sponsored by
the National Cancer Institute through the
Program in Cancer Research Outcomes
Training (2001-2011). She also held competitive
fellowships and received research
funding from the Edmund J. Safra Center
at Harvard. Before her training at Harvard,
she earned a master’s degree in social
work from Columbia University in 1998
and a master’s degree in bioethics from
Union College/Albany Medical Center in
2006. She practiced at Memorial Sloan-
Kettering Cancer Center as a clinical social
worker from 1999 to 2006. Dr. Rose
has published on various topics in health
policy, mental health policy and bioethics.
She is currently investigating financial
relationships among patient advocacy
groups and industry, and is a co-author
on a project testing different conflicts of
interest disclosure mechanisms. Dr. Rose
was an active member of the ethics committees
at Brigham and Women’s Hospital
and Memorial Sloan Kettering.
Bioethics Reflections | Fall 2011 clevelandclinic.org/bioethics | Phone: 216.444.8720

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Congratulations to our Fellowship
Class of 2009 – 2011:
Valarie Blake, JD, MA, has joined the American Medical Association
in Chicago as a Senior Research Associate in Ethics Standards.
Laura Buccini, DrPH, MPH, is working as a Health Sciences Specialist/Program
Director in the Host Susceptibility Factors branch of the
Epidemiology and Genetics Research Program, Division of Cancer
Control and Population Sciences at the National Cancer Institute in
Rockville, Md.
Charlisse Caga-Anan, JD, is a fellow in the Center for Genetic
Research Ethics & Law at Case Western Reserve University in
Cleveland. There she will focus on research ethics and genetics/
genomics research. She continues her ethics and legal research
while also gaining experience in empirical research methods, grant
writing and policy formulation.
Bioethics Reflections | Fall 2011
Welcome New Fellows
We are pleased to announce the following fellows
joining us for the 2011-2013 Cleveland Fellowship
in Advanced Bioethics.
Jalayne Arias received her bachelor’s degree in
international studies at Pepperdine University’s
Seaver College in Malibu, Calif., and her JD, including
a certificate in health law, from the Sandra Day
O’Connor College of Law at Arizona State University.
Jalayne has been working as a fellow and faculty
associate for the Public Health Law and Policy
Program (College of Law, Arizona State University),
where she also has served as Deputy Director of
the Public Health Law Network, Western Region.
Her current interests include the impact law and
policy have on clinical research; informed consent
process as it impacts clinical research on vulnerable
populations; and the legal and ethical barriers
for providing palliative care for children with
terminal diseases.
Danielle Marie Wenner received her bachelor’s and
master’s degrees in philosophy at Tulane University.
She also earned a master’s in philosophy at Rice
University in Houston where she recently completed
her doctorate in philosophy. Her interests
include international clinical trials ethics, the ethical
and scientific constraints on clinical trials for new
surgical procedures, and emerging medical technology
and ethics.
clevelandclinic.org/bioethics | Phone: 216.444.8720
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