Hi.
I'm Nancy Yamada for the Hospice Foundation of America.
A colleague once lamented that hospice may be one of the
best-kept secrets.
We certainly hope that's not true – after all,
that's why we're here today.
But the remark may not be completely wrong.
Although every year more and more people choose to receive
hospice care, there remains a significant number who do not.
In order to understand some possible reasons WHY not,
we'll break down the larger number of individuals into a
smaller number of groups based on something they have in common
– for example: ethnicity, special needs or even geography.
We'll call each of these groups an "under-served population."
Now, we'll show you examples of how some hospice organizations
around the country are working with under-served populations to
make sure everyone who is medically eligible for hospice
care in their community has access to it.
Family Family Hospice and Palliative Care has a
nine county service territory in western PA.
and we were founded in 1980 which makes us one of the oldest
hospices not only in the state but in the nation...
But CEO Rafael Sciullo was both surprised and dismayed to learn
how few patients they had from Pittsburgh's predominantly
African American north side.
So he commissioned neighborhood focus groups to find out why.
One of the barriers which was identified - which was a pretty
critical, basic one for us was the language that is
traditionally used in describing hospice care.
We describe it as the end of life.
And what was identified from people in the group - both
leaders of the community and also those who received health
care in the community - was that that language didn't fit them –
that for them, it wasn't about closure,
it wasn't about end.
It was about transition.
Thus, the "Transitions" program was born – sown from seeds cast
by Reverend De Niece Welch.
As a hospice board member, she questioned whether North Side
residents had adequate access to care.
Now, two years later, she coordinates the new Transitions
program.
There have been focus groups after focus groups,
conversations after conversations but to actually
formalize a program, on paper it's one thing,
but actually talking to people and families
and pastors is quite another.
One of those with whom Reverend Welch had spoken about hospice
is LeBrun Anthony – caregiver both to her 97-year old father
who has dementia and 62 year old husband,
William, who has cancer.
It's hard and just by the grace of God that He gives me the will
and the strength to do it.
I know they're my loved ones and I feel a sense of responsibility
to take care of them.
I feel very safe that the nurse is coming to see William.
She comes once or twice a week but if we need her to come more
than once or twice a week, then she comes more than once or
twice a week to monitor him.
The transition program has necessitated some changes within
FHPC as it relates to our values in our culture.
We traditionally have been – in the first 20 years of the
organization – primarily a white hospice and palliative care
organization and the last 10 years we have tried to make
significant inroads to increase the diversity in our
organization on all levels and we have grown and moved a lot
further than we were in the past.
I think a program like Transitions says to the
community that we care about you from birth to the end of life,
that we not only care about the very young or the very old or
the middle age, we provide or we think about you from the moment
you get here to the moment you leave here.
Our next example of an under-served population may
surprise you.
They are men and women who live all over the country and come
from virtually every racial, religious,
cultural and socio-economic background.
How ironic – and sad – that what they have in common...
is service to their country.
I met Sgt. Hankins when I was in the military myself.
I was in the Women's Army Corps and we met
when we were both stationed in Germany.
We got married in Germany back in '66.
So he's been in artillery, the infantry,
his last duty station was at Ft. Sam Houston where he was a
career counselor.
He was in Vietnam – that's where he was exposed to
agent orange and they say may be why he has the multiple problems
he has now because of agent orange.
I just feel he should be treated with honor since he was
in the military, fought for the country and I want him to have
the best care.
Experience suggests that to provide the best care,
hospice professionals should have additional training to
recognize veterans' unique physical,
emotional, even spiritual needs at end of life...
because of their service-related experiences and re-adjustment to
life at home.
Thad Juras – a retired Army officer – runs the veterans
outreach program for VITAS, the hospice caring for Sgt. Hankins.
I think that what's happening – and thankfully so – in the
community of hospice providers is that we're now becoming much
more aware of who veteran patients are,
where they're located, what their needs are and we just have
a better understanding now, now that we've identified them as
veterans, we have a better understanding of those needs.
I don't think it's something that has just begun.
I think it's something that has always been out there but with
all the work the V.A. has done with hospice and palliative
care, all the emphasis they've put on it with the number of
WWII vets dying every day, has really raised the awareness of
the entire country of these issues that veterans face.
For Sgt. Billy Hankins, hospice care offers due respect.
For his wife Diane, it offers peace of mind.
I just want him to be comfortable and free of pain-
that's what's happening right now.
And he's at home where he can be with his family and friends.
He's so much more relaxed and hospice is just great.
We've seen how an under-served population may be defined by
ethnicity – such as in Pittsburgh,
or by special needs, as in San Antonio.
Our final example is an under-served population defined,
essentially, by demand exceeding supply.
Circle of Life Hospice has been around for 10 years as a
community based nonprofit hospice agency serving the 4
counties of northwest Arkansas which have seen significant
growth in the last 20 years and is anticipated to have
additional, significant growth in the next 20 years.
And, says Dr. Steven Thomason, as his community prospers,
his hospice struggles to keep up with increasing
demand for its facilities.
The hardest job that I have as a hospice physician,
as a medical director, is having three patients who need the one
bed that I had available, and having to decide who were the
two who need it who aren't going to get it today
because I don't have it.
Circle of Life, like many hospices,
has a short-term-stay facility for patients whose pain cannot
be adequately managed at home...
or who would prefer not to die at home...
or whose caregiver needs a break.
But most days, says Dr. Thomason,
every bed is full and sometimes there's even a waiting list.
So, while they raise funds to build a second permanent
facility about half-an-hour away,
Circle of Life operates a temporary inpatient center –
which Dr. Thomason says helps meet family's needs as well as
the patients.
In our service area, this four county area,
even though we have a 50 mile radius,
50 miles is a long way for someone who,
for example, may be in their 70s,
may feel uncomfortable driving in traffic,
may feel uncomfortable driving at night,
and so if their loved one is in a hospice inpatient unit for
example, to drive 40 or 50 miles every day to be with their loved
one is really prohibitive.
Having inpatient hospice care close to home for 72-year old
Mary Sanchez was more than just a matter of
convenience for her son.
If I had to drive an hour or 30 minutes there is a good chance I
may not have known folks who work at the hospice house that
far away.
So it was a huge blessing for me that when we came out here,
I knew several people.
It's nice to be around people when you're working on,
suffering that kind of loss that's coming about.
I think it's huge.
It's absolutely huge.
It was huge for us, I'll tell you that.
There are still too many people who need - and don't receive -
hospice care.
But as we've seen in just these few examples,
hospices around the country are trying to make it easier for
everyone in their community who can benefit from hospice...
to have access to it.
I'm Nancy Yamada for the Hospice Foundation of America.
Thanks for watching.