Welcome Susannah Rose, PhD - Cleveland Clinic · Carol Gilligan, PhD. Dr. Gilligan is a moral development theorist, psychologist and professor. “Having Dr. Gilligan speak was a

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Every life deserves world class care.

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

Research Day Staff Announcements and Former FellowsEthics and the Maternal-Fetal Dyad

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 Depart-

ment of Bioethics at Cleveland Clinic along with collaborators

from Cleveland Clinic, Case Western Reserve University (CWRU)

and University Hospitals, and students from the CWRU bioeth-

ics 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 affili-

ation 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.

A publication of the Cleveland Clinic Bioethics Department | Fall 2011

Largest Research Day Yet Brought Fresh Perspective, New Faces and Poster Session

Bioethics Reflections | Fall 2011

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 Ken-

nedy 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 pro-

gram 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 Medi-

cine, 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.

Congratulations to Our Staff for the Following Achievements:

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 Special-

ist/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.

Welcome New FellowsWe 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, includ-

ing a certificate in health law, from the Sandra Day

O’Connor College of Law at Arizona State Universi-

ty. 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 vulner-

able populations; and the legal and ethical barri-

ers 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 com-

pleted 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 technol-

ogy and ethics.

clevelandclinic.org/bioethics | Phone: 216.444.8720

New Staff: Welcome Susannah Rose, PhD

We are pleased to announce the appoint-

ment 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 Har-

vard she received a pre-doctoral fellow-

ship from the National Institute of Mental

Health (2006-2008), and pre-doctoral

and post-doctoral fellowships at Massa-

chusetts General Hospital, sponsored by

the National Cancer Institute through the

Program in Cancer Research Outcomes

Training (2001-2011). She also held com-

petitive 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 bioeth-

ics. 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 com-

mittees at Brigham and Women’s Hospital

and Memorial Sloan Kettering.

Bioethics Reflections Now Available By Email

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Bioethics Reflections | Fall 2011 clevelandclinic.org/bioethics | Phone: 216.444.8720

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 regard-

ing 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 Far-

rell, 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 provides

news and information from

the Cleveland Clinic Bioethics

Department for our colleagues

across the country.

Eric Kodish, MDChairman, Department of Bioethics

Barbara GouldenAdministrator, 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


Former Fellow: Jason Gatliff, PhDAs 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 doc-torate degrees in philosophy and was partial to mili-tary 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 Inte-grated 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.”

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 recommenda-

tions of her healthcare provider or, in the case of high-risk pregnan-

cies, 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 Depart-

ment 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 pro-

viders 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 pro-

cedures, 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 se-

rious 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 con-

genital 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 repro-

ductive 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 deci-

sion-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 health-

care 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. Far-

rell.

Sometimes, when a patient is uncertain about a recommended pro-

cedure, Dr. Chapa may refer her for a second opinion. “It may help

the patient to hear another perspective,” he says.

Ethics and the Maternal-Fetal Dyad: Unique Challenges for Patient and Provider

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 circum-

stances,” 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 in-

formed 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 com-

plications 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 in-

formed decisions, we have to recognize that the clock does

not stop ticking because we are in the midst of an ethical or

medical dilemma.”
























Sincerely,

Eric Kodish, MD








across the country.







































































says Dr. Farrell.













the delivery.”











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medical dilemma.”
























Sincerely,

Eric Kodish, MD








across the country.







































































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the delivery.”











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medical dilemma.”










































Dr. Sharp says.





















Medical Genetics.







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Rockville, Md.

























terminal diseases.









ogy and ethics.







































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Dr. Sharp says.





















Medical Genetics.







Studies.








Rockville, Md.

























terminal diseases.









ogy and ethics.







































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Documents

Welcome Susannah Rose, PhD - Cleveland Clinic · Carol Gilligan, PhD. Dr. Gilligan is a moral development theorist, psychologist and professor. “Having Dr. Gilligan speak was a