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WOMAN: Welcome to Hospice Foundation of America's
Second Annual New Perspectives Program:
Artificial Nutrition and Hydration at the End of Life.
Now, from Washington, DC, our moderator, Frank Sesno.
Thank you, Melissa Mapes, and hello, everyone.
I'm Frank Sesno,
Director of the School of Media and Public Affairs
at the George Washington University.
It is my pleasure and my privilege to be back with you
having this conversation.
Thanks for joining us.
Today, we take on a subject that you've likely encountered
in your professional lives --
artificial nutrition and hydration,
commonly known as ANH.
We're talking about a medical treatment
where liquid nutrition is delivered in a variety of ways.
Most commonly at life's end,
ANH is delivered to the stomach or intestines
by a tube surgically inserted through the abdomen.
ANH can help prolong life in people unable to swallow
or who have obstructions preventing normal digestion.
But mounting evidence suggests that in some people,
ANH can cause complications and discomfort
that may severely impact the quality of life.
Some of the questions I will ask our panelists
were submitted in advance
by people who will be watching this program, as you are.
But our in-studio experts are neither scripted nor rehearsed.
That's a good thing.
You may not always agree with them.
They may not always agree with one another.
But that's what makes this topic and this program interesting.
You can find detailed information about our panelists
in your printed program, but here is a brief introduction.
MAPES: Frank, our panelists are distinguished professionals,
widely recognized for expertise in their respective fields.
Terry Altilio is Social Work Coordinator
in the Department of Pain Medicine and Palliative Care
at Beth Israel Medical Center in New York City.
In addition to direct clinical work,
she lectures on pain and symptom management
and ethics in the post-master's End-of-Life Care Programs
at New York University School of Social Work
and Smith College School of Social Work.
Ken Doka is a professor of gerontology
at the Graduate School of the College of New Rochelle
and senior consultant to the Hospice Foundation of America.
A prolific author and editor, Dr. Doka serves as editor
of HFA's Living with Grief book series,
its Journeys newsletter,
and numerous other books and publications.
Dr. Doka is an ordained Lutheran minister.
Rabbi Gary Fink is Director of Spiritual Care
at Montgomery Hospice in Rockville, Maryland,
where he formerly served as a chaplain.
He teaches in the psychology graduate program
at Hood College in Frederick, Maryland,
and conducts classes in ethics
for the Florence Melton Continuing Education Program
at Hood College.
Thomas E. Finucane is professor of medicine
at the Johns Hopkins University School of Medicine,
the JHU Bioethics Institute,
and is part of the JHU'S Core Faculty
of the Biology of Healthy Aging Program.
Dr. Finucane chaired the Ethics Committee
at the Johns Hopkins Bayview Medical Center
from 1994 to 2006.
He also has served as a member
of the Maryland Healthcare Ethics Committee Network
and currently serves on the Editorial Board
of the Journal of the American Geriatrics Society.
JoAnne Reifsnyder is the Chief Nursing Officer
for Genesis HealthCare
and an adjunct assistant professor at
the University of Pennsylvania School of Nursing.
She currently is President
of the Hospice and Palliative Nurses Association
Board of Directors and Chair of the New Jersey
Hospice and Palliative Care Organization Ethics Committee.
She also serves on the boards
of the Hospice Foundation of America
and LifeChoice Hospice. Frank?
Thanks, Melissa.
And joining me for our first panel discussion
on the clinical aspects
of artificial nutrition and hydration
are some of the guests you just met.
Tom Finucane -- he's professor of medicine
at Johns Hopkins School of Medicine in Baltimore.
Terry Altilio, Social Work Coordinator
at Beth Israel Medical Center's Palliative Medicine Service
and a lecturer at the Schools of Social Work
at NYU and Smith College.
And JoAnne Reifsnyder -- she's Chief Nursing Officer
of Genesis Health Care and adjunct professor
in the University of Pennsylvania School of Nursing.
Welcome to you all.
Before we get started,
let's review today's learning objectives.
Let's begin by agreeing that ANH
can be a valuable treatment for many patients.
Among them is Michele DeMeo, a 38-year-old woman with ALS
who is receiving home hospice care.
When we spoke with Michele, she used artificial nutrition
to supplement the limited number of foods
she could still swallow safely.
I do use, um, tube feedings
and soft foods for many reasons.
One...
it reminds me that I'm still alive
and a complete human being.
The idea of solely using the tube feedings
when I have an ability to use,
um, to have some of my favorite foods, like pasta,
helps me feel more engaged
in natural human activities.
Yet I'm intelligent enough to know
that I can't get enough nutrition
out of just mechanically soft foods,
so I like to think I use
good judgment in balancing both.
I'm finding I'm having to use
the tube feedings
more frequently, though.
The tube feedings
have greatly improved
me not feeling hungry.
They fill my stomach,
as would a healthy person
eating a hoagie sandwich
from a deli down the street.
My stomach becomes full.
I will continue to use
the feeding tube
for as long as I have purpose and value
and as long -- and that,
I believe, will continue
as long as my respiratory stays
at the same condition
or at a similar rate of decline.
Once I get to a point
that my respiratory
requires more intervention,
I will either stop using it,
or I simply
won't wake up one morning
because I've chosen
not to go on a vent.
So it may not even be a choice.
Tom, very powerful and very personal
and revealing commentary, that.
I'm wondering what your thoughts are, response to that,
and where you think ANH is most clearly beneficial.
In the case of this patient, there are two features
that we should keep an eye on.
One is, she's still speaking for herself.
And I think a lot of this discussion will be
about people who no longer can represent what they want.
So, in that regard, everybody has the right to say,
"Keep your hands off of me," and she's still able to say it.
But a lot of this discussion
might be about people who can no longer say --
SESNO: But you'd agree that in her case,
this is beneficial, advantageous,
for her, for Michele?
Yes, at least at the spiritual level,
and we don't know enough about her ability to swallow.
So, in your view, what kinds of cases
benefit most from ANH, and which don't?
The most straightforward is
a complete obstruction of the foregut,
where nothing can get down,
and everything else about the person is okay.