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HBO: What drew you to this subject?
Liz Garbus: In the wake of the Terri Schiavo controversy
that had this nation captivated, I was talking
about these issues with Sheila Nevins,
President of Documentaries at HBO, and she
suggested we should investigate these end-of-
life decisions, and what it means to be in a
coma, a minimally conscious state, or a
vegetative state.
What do people know? What do they feel? Are
they aware of what is going on around them?
What are their families going through?
I then found JFK Hospital in New Jersey
which was very unique because they had
patients for many, many months through
their rehab, so you could really see a patient's
progress, or lack of progress, over a period of
time. As soon as we walked into that world,
we knew it would be a very intense and
dramatic setting for a film. A place where life
and death decisions were made on a daily
basis, where people emerge from coma to
recover and return to their loved ones, or
where some others may languish, seemingly
locked inside themselves.
HBO: It's fascinating how people project their own
reality onto situations, like the Schiavo case.
Liz Garbus: You know, we extend life in this country, and
in the Western world in general, to
extraodinary lengths. Many people would
have died at the scene of an accident, and
now with the miracle of modern medicine,
they can be saved in an ambulance. But
some will end up alive, but not really alive.
The question becomes, who is it for? At what
point does life become not worth living? AND,
who decides?
When I started to investigate this subject I
came across these studies that said after two
years in a vegetative state, there's really no
hope that somebody will emerge out of that
state. And when I walked into this world I felt
that I knew what I would do if a loved one of
mine was in that situation. But after
spending time with these families, my position
changed.
As a parent, it would take me a very, very,
very long time if I could ever make that
decision, the decision to withdraw care and
allow your child to die. I just don't know how
you do it. But intellectually, I do know that at
a certain point extending the life of the patient
is really not for the patient themselves, but for
their loved ones. And then, is that really fair?
These are some of the hardest questions I
have ever looked at.
I think as an outsider who became very
involved in these cases, if you see these tiny
little movements in a face, or you see tiny
little signs--a flicker of an eye, a movement of
a finger--you start to project consciousness
into tiniest of moments.
There's a lot we just don't know and we don't
understand, and we project our emotions and
feelings onto them. And perhaps at moments
there are flickers of systems that are
otherwise down that light up. That's why it's
so fascinating. And at this point, so
unknowable.
There's a scene in the film where one of the
mothers is trying to communicate with the
son and she says, do you feel pain? And she
says, blink once for yes and blink two for no.
As an outsider, I could see he was blinking
many times an hour, but she saw these blinks
and to her this was oh, okay, you're not
feeling pain. And she saw that answer. And
that was the answer she needed to see. But to
an outsider it seemed as though he was just
blinking sort of spontaneously over the course
of an hour. But you couldn't tell this mother
that that wasn't communication. And who
really knows. Not even the most acclaimed
experts in this field can say so with 100%
certainty.
HBO: It seems like the loved ones have no choice
but to inhibit a very difficult space between
hope and hopelessness.
Liz Garbus: You know, consciousness and awareness and
communication, that's what we want, right?
It's one thing if somebody can't walk. But
there's a way you can live with that, because
you can push them around in a wheelchair.
It's the ability to communicate with a loved
one - language. And there is a certain part of
the brain responsible for language. That is the
key that everyone's always trying to harness.
One of the most important things said by a
parent in the film is that a vegetative state is
just not an acceptable state to be in. It's got to
get better, or it's got to get worse. And better
means emergence, and worse probably means
death. She said this is harder than losing a
child, because this way you lose your child
every single day.
HBO: What do you hope audiences will take away
from the film?
Liz Garbus: One thing that's very important is to discuss
with your family members what you would
want to have done with you were you in a
vegetative state. And I think seeing this film
will enable people to understand this a little
bit more, and to begin to have those
conversations.
HBO: So often morality gets wrapped up in it,
doesn't it?
Liz Garbus: Right. Who chooses? And with Terri Schiavo
there was a battle between the husband and
the parents. And that's why the Schiavo case
garnered such attention. But people do make
end-of-life decisions in this country. And
there is withdrawal of care for people in
vegetative states. I think it takes families a
long time to get to that point, but it does
happen. But there really are no standards or
guidelines, so people look to religion to guide
them, and that can become difficult when
people have different moral systems.
And I also think there's a political question
which needs to be asked, which is: we have all
these amazing life-saving, and life-extending
techniques now, but there also has to be a
moral and ethical discussion about at what
point does life become not worth living?
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