Just days before she was scheduled to graduate from Smith College, twenty-two-year-old aspiring veterinarian Maggie Worthen had a severe stroke
caused by a blood clot in her brain stem. It
was May 2006, and earlier in the day she
had complained of a terrible headache but
didn’t go to the infirmary, instead staying in her dorm room at Smith to finish
a final paper. After hearing strange noises
and getting no response, a friend entered
Maggie’s room through a window and
found her unconscious, her body blocking the door.
For hours, Maggie teetered at the brink
of life and death. She had numerous seizures, and after being transferred to a large
area hospital she underwent surgery to
remove the clot. When she was eventually
released to a nursing home months later,
it was with a diagnosis of permanent vegetative state.
Despite this designation—which meant
that she had no awareness of herself, others, or her environment—Maggie’s mother,
Nancy, thought there may be more going
on in her daughter’s mind. Maggie would
occasionally make sounds or cry when
such a reaction made sense. Nancy wanted
to find out whether her daughter was still
there—or proof that she wasn’t. Eighteen
months later, she got that chance when
Maggie was accepted into a study at Weill
Cornell Medicine.
The Worthens’ story—along with those
of dozens of other families who were
forced to deal with the consequences of
disorders of consciousness from a severe
brain injury—is at the heart of Rights Come
to Mind: Brain Injury, Ethics, and the Struggle
for Consciousness by Joseph Fins, MD ’86,
the E. William Davis Jr., MD, Professor of
Medical Ethics, professor of medicine, and
chief of the Division of Medical Ethics at
WCM. In his book, Fins weaves these nar-
ratives into a complex tale of how the care
of these patients is complicated by the
history of severe brain injury in America,
even as research is unraveling new ways to
help the brain recover. His aim: to make
the case that medicine must use better
tools to diagnose these patients, so those
with the potential to improve with reha-
bilitation and evolving therapeutics can
regain function and be reintegrated into
society. “Some of these people might be
able to interact with their family and
friends, but are instead left in a nursing
home and never thought to be aware or
able to communicate,” says Fins. He cites a
study which found that more than 40 per-
cent of nursing home patients with trau-
matic brain injury were misdiagnosed as
vegetative, when they could actually feel
pain and comprehend some of what was
going on around them. “These are things
that give me chills and keep me up at
night. Mistaking a conscious individual as
permanently unconscious is an affront to
human rights.”
The idea for the book sprang from
Fins’s collaboration with Nicholas Schiff,
MD ’92, the Jerold B. Katz Professor of
Neurology and Neuroscience in the Feil
Family Brain and Mind Research Institute.
Since 1997, Schiff and Fins—who co-
direct the Consortium for the Advanced
Study of Brain Injury (CASBI) at WCM and
the Rockefeller University—have worked
together to answer the kinds of questions
that stand to shape how society treats peo-
ple with brain injuries. What is the capac-
ity of brains to recover? What are the
mechanisms of that recovery? How do we
know that our assessments are accurately
describing what’s going on in a patient’s
Mother and child: Nancy Worthen doing art therapy with her daughter, Maggie, who was
minimally conscious following a blood clot.
Inner Life
A new book by bioethicist
Joseph Fins, MD ’86,
explores the rights of
the minimally conscious
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The minimally conscious
state is hard to diagnose—
in part because such
patients only sporadically
show signs that they’re
aware of themselves, other
people, or their environment,
even though they are.
