A Free Publication of Delaware Hospice
Holding Hands. Holding Hearts.
Making
the Best
Decision
Go Ahead...
Give Yourself
a Break
Helping
Veterans
Find Peace
The Gift of
Listening
F E AT U R E A R T I C L E
Welcome to Touching Lives
8 Making the Best Decision
Dear Reader,
When the Time is Right
to Choose Hospice
We’re pleased to offer you Touching Lives as a community
by Marlene Prost
outreach of Delaware Hospice, sharing information and
6
stories about hospice and the impact it’s had on patients’
and families’ lives.
We hope this magazine helps you, a family member, or
a friend to discover the gifts of hospice care.
Our feature story recognizes Delaware Hospice’s 30th Anniversary, with a look
back through the eyes of founding members, and then a look at where we are
today. It continues to be a remarkable journey.
Other stories include “Bringing Dreams to Life,” which illustrates how hospice
caregivers often find ways to create special moments for patients, reminding them
that they “are more than just a patient.” Caregivers Corner discusses compassion
CONTENTS
8
4
12
Delaware Hospice
Celebrates 30 Years
of Caring
fatigue and offers tips for caregivers to avoid burnout. “Making the Best Decision”
speaks to those who may not understand what hospice is, what its benefits are,
or when to make a call; and “Everything You Want to Know” gives even more
detail. Trudy Harris, RN, shares her experiences which have taught her that
listening to a terminally ill person with open hearts and minds can teach us
much about ourselves. Finally, “Helping Veterans Find Peace” addresses the
MEMORABLE MOMENTS
special need that many veterans have to speak about their military experiences
5
Bringing Dreams to Life
in order to find peace.
by Marlene Prost
Please enjoy this issue of Touching Lives, and I hope you will feel welcome to
CAREGIVER’S CORNER
6
Go Ahead...
Give Yourself a Break
by Paula Spencer Scott
contact Delaware Hospice at any time to ask questions or learn more about our
programs and services.
Warm regards,
SPIRITUAL SUPPORT
12 What the Dying Teach
Us About Life’s Gifts
by Trudy Harris, RN
Q & A
Susan D. Lloyd, M.S.N., R.N.
President and C.E.O.
14 Everything You Want
to Know (but may not
want to ask)
Delaware Hospice, Inc.
New Castle County: 3515 Silverside Road
Wilmington, DE 19810
by Larry Beresford
LIVE WELL
16 Helping Veterans Find Peace
by Bob Calandra
17 Delaware Hospice
Celebrates 30 Years
of Caring (continued)
19 Volunteer Opportunities
www.delawarehospice.org
Kent County:
911 South DuPont Highway
Dover, DE 19901
Sussex County:
Delaware Hospice Center, 100 Patriots Way
Milford, DE 19963
Pennsylvania:
1786 Wilmington West Chester Pike
Suite 100B
Glen Mills, PA 19342
Telephone:1-866-402-3805
© 2012 SRI Media, Inc. (610) 455-0706. All rights reserved. Unauthorized duplication is prohibited by law.
Delaware Hospice
Celebrates 30 Years of Caring
holistic care accomplished at home, but I will incorporate
the attitudes into my own thinking and caring for aging
patients.” Indeed, Gretchen Jones went on to become an
important advocate for Delaware Hospice as well as its first
Patient Care Coordinator in 1982.
Chaplain Lloyd Evans played a key role as the first
Chaplain. He recalls, “The word about the practicality of
hospice care was spreading rapidly through the clergy.
When the Episcopal Church provided $40,000 in seed
money to help establish Delaware Hospice,
others in the religious community took
g
n
i
r
a
of C
HEADLINE: October 18, 1982:
“Delaware Hospice” is launched by a grassroots committee to give local citizens access
to this rapidly-growing holistic approach to
end-of-life care.
notice and also gave
After years of planning, concerned citizens established
sabbatical
Delaware’s first and only not-for-profit hospice. The
leave from the
initiative was driven largely by nurses, physicians, and clergy.
University of
In 1976, nursing student, Gretchen Jones, visited one
Delaware to write the
of the first hospices, St. Luke’s in England, and wrote home:
documents for incorporating
“St. Luke’s is like something out of a theoretical textbook
Delaware Hospice and served as its
which you know you’ll never see in a real situation. The
first Executive Director. She remembers the first
rapport the staff has with patients, each other, and physicians
fundraising effort. “We mailed letters to local addresses
is so unheard of in the U.S. I know I will not see this type of
explaining who we were and asking for contributions.
crucial support to
the young
agency.”
Dr. Amy
Hecht took
rs
a
e
30 Y
www.delawarehospice.org
3
a
D E L A W A R E
H O S P I C E
b
We did receive several small donations, and then opened
one envelope and found a check for $25,000!”
Gene Donnelly has served Delaware Hospice as a
founder and member of the Board of Trustees since 1981.
He reflected, “In 1981, we never dreamed that this fledgling
organization would grow to what it has become. It’s really
overwhelming for someone who’s been there from the
Lupus sufferer, Nancy Arocho, credits Delaware Hospice’s Transitions
program for helping lift her out of the downward spiral. She said,
“They helped me in so many ways.”
beginning to see what has transpired.”
hospital bed was delivered! The C.N.A. who bathes and
HEADLINE: October 18, 2012: “Delaware
Hospice celebrates 30 years of providing
high quality hospice and health care services
and serving as a trusted community partner
in end-of-life education and support.”
gives personal assistance to Bill is so kind and skilled in
what she does, and makes him feel so much better. Our
Chaplain visits to sit, talk, and pray with us. He promises us
that whatever we need to talk about, he’ll be here. And he
has been.”
“I didn’t know the first thing about caring for a patient,
Delaware Hospice has been a remarkable story. With
and this one call to Delaware Hospice has brought us all the
its focus on quality care and meeting the needs of the
help I need. They’ve taught me what to do, how to treat
community and with strong support of volunteers and
sores, how to prop Bill’s legs so that he’s more comfortable
donors, it has served 39,000 patients and families and
—a thousand little tips. They’re just a phone call away. They
established unique programs to benefit families.
told us even if it doesn’t seem like a big issue, call us
anyway. It’s overwhelming how good they’ve been to us.”
Quality Care
“Our wish was to keep Bill at home; we don’t want him
to be anywhere else. Delaware Hospice’s care, has allowed
Mary Jane and Bill Adkins called Delaware Hospice when
us to do just that—keep Bill in the peace and comfort of his
Bill’s lung cancer became untreatable. Mary Jane said,
own home.”
“I expected them to care for Bill, but I didn’t expect them
to care so much about me and my needs. I have found such
relief in just having people I can really talk to about what
Unique Programs for Families
we’re going through.”
Delaware Hospice’s Transitions Program offers non-medical
“Delaware Hospice’s nurses are so knowledgeable about
relief to seriously ill individuals through compassionate help
medications and help us work with the insurance companies
and guidance to community resources. Transitions Supervisor,
and doctors to make changes to fit our preferences. When
Al Morris, explained, “The progression of serious illnesses
Bill needed oxygen, it was delivered immediately. Our social
such as Alzheimer’s, Parkinson’s, liver and lung diseases,
worker has been like a guardian angel hovering over us,
kidney failure or cancer takes its toll on the family. Transitions
listening, hearing our needs, working through legal
relieves some of that burden by identifying appropriate
documents. One day I mentioned that Bill’s back was
community services or simply providing companionship
hurting from sleeping on his recliner, and the next day a
and a listening ear.
(continued on page 17)
4
www.delawarehospice.org
Dreams
a
M E M O R A B L E
M O M E N T S
b
Bringing
by Marlene Prost
B
Fulfilling dreams
is especially
life-affirming
for those who are
living with a
terminal illness.
uddy had a lifelong dream
they threw a “Mary Tyler Moore”
—to someday meet Dolly
party, singing the television show’s
Parton. But what were the
theme song and dressing Patricia in
chances, now that he was in his 70s
the iconic Mary Tyler Moore wig.
and in hospice care, that he would
At the end of life, some dreams
ever meet the famous country singer,
may have to be modified, but they
much less give her a big hug?
are no less precious. If a patient has
Sometimes dreams come true—
always dreamed of taking flying lessons,
especially if hospice has anything to
hospice caregivers may arrange a flight
say about it. When the hospice staff
in a small plane. Instead of a grand trip,
learned of Buddy’s ambition, they
a patient may take a peaceful drive to
contacted Dolly Parton and her
see the autumn foliage. Family and
associates in Dollywood, who rolled
friends take on new importance at the
out the red carpet for Buddy, while a
end of life, and a patient might want
local hospice foundation covered
nothing more than a good home-cooked
airfare and hotel accommodations.
meal, a visit with an old friend, or an
And Buddy finally got his big hug.
afternoon baking cookies with a
We all have wishes of a lifetime
grandchild. Some hospice patients
tucked away in our hearts—a bucket
consider it a major goal to make it
list of things to do before we die,
or memories we hope to
someday revisit. For loved
ones in hospice care,
to a family wedding or graduation.
Fulfilling dreams is especially
life-affirming for those who are living
with a terminal illness. It brings them a
these wishes are even
renewed vitality and it lets others see
more meaningful, and
them, not in terms of their illness, but
realizing them is
as individuals with unique personalities
especially sweet.
and interests.
Not all dreams are
as elaborate as Buddy’s.
Hospice caregivers often find
Buddy meets his idol.
to Life
“So many people in hospice care
have identified for so long with being
a patient. We take them back to
imaginative ways to create special
‘I’m still a person,’” says Vicki Costa,
moments for patients. Patricia, 42,
a clinical social worker who works in
had always wanted to meet actress
hospice care. “When patients are
Mary Tyler Moore, so her hospice
given the opportunity to put the
caregivers did the next best thing.
focus on living, the quality of life
They contacted the actress, who
becomes better, as they focus on
wrote Patricia a personal letter, and
enjoying each day.” V
Touching Lives
5
a
C A R E G I V E R ’ S
C O R N E R
b
Go Ahead...
Give Yourself a Break
Rejuvenate
in ways that
feel good
by Paula Spencer Scott
6
Touching Lives
L
aura Patyk hated to leave her
six school-age children. “I learned the
mother’s bedside when she
hard way to take better care of myself,
had end-stage congestive
no matter what.”
heart failure, just as two years earlier,
Burnout is a real risk for family
she’d hesitated to leave her father-in-
members caring for a loved one.
law, who had kidney cancer.
Professionals call it “compassion
Both elders were in the good
fatigue”—caring so much that
hands of hospice programs in greater
you give yourself too little. It’s a
Charlotte, North Carolina. But it always
byproduct of the stress and fatigue
felt selfish to her to take a break.
that can hamper caregivers, says
“And sure enough, I kept getting
Patricia Smith, a certified compassion
sick and developed insomnia,” says
fatigue specialist and founder of the
Patyk, who also cares for
Compassion Fatigue Awareness Project.
a
C A R E G I V E R ’ S
“Stress is all about ‘too much’—
C O R N E R
ƒƒ Recharge in ways that feel
b
complete break from technology
too much work, too much activity, too
authentic to you. If your best
much stimulus. Burnout is ‘too little’—
friend wants to drag you shopping
ƒƒ Don’t be hamstrung by fears
too little time, too little interest, too
but you find it draining, you won’t
of what you’ll miss. Patyk, the
little energy,” she says.
feel refreshed. Find what works for
Charlotte caregiver-mom, is now
Whatever you call this distressing
you, not anyone else. “The art of
caring for her widowed live-in
syndrome, here’s a healthier approach:
‘filling up’ is finding what brings
father, who has cardiac issues. But
ƒƒ Be aware that this is a very
you peace, well-being, and a sense
this time around, she listens to her
of belonging,” Smith says.
instincts when she needs a break.
real issue. “The premise of
healthy caregiving is this: Fill up,
ƒƒ Take a break from technology.
on weekends.”
She goes bike riding around her
empty out. Fill up, empty out,”
There are other sources of stress
neighborhood and lunches regularly
says Smith. “Caregivers who are
in our lives that can contribute
with friends. She even recently got
at risk for compassion fatigue
to burnout. “Because we all love
away to the beach overnight.
empty out, empty out, empty out.
our smartphones and pagers, we
They never learned to fill up so
are ‘on call’ 24/7,” Smith says.
even in a storm,” she says. “Even
they have something to give.”
“Set boundaries. Check your
if something happened in my
email at 9 a.m., noon, and 6 p.m.
absence, I have no regrets because
include isolation, bottled-up
only. Limit how much time you
I know I’m doing and saying
emotions, persistent sadness and
spend on your cell phone. Take a
everything I need to.” V
Warning signs of burnout
“There’s always a little calm,
apathy, lack of interest in self-care,
and persistent ailments such as
colds or gastrointestinal upset.
Paula Spencer Scott is a senior editor of the eldercare website Caring.com and a 2011 MetLife
Journalists in Aging Foundation fellow.
ƒƒ Don’t think that “nobody can
do this but me.” It’s true that
you know your loved one better
What a Caregiver Needs to Hear
than anyone, and you provide a
Many caregivers neglect their own needs because they worry
wonderful level of care as a result.
what others, including their loved one, will think if they take time
But others—family, friends,
away from caregiving.
community resources such as
That’s why it’s so useful for caregivers to hear encouraging messages
nursing aides and elder companions,
of support from patients and the rest of the family.
or hospice and palliative care
ƒƒ “You’re not selfish.” It may be true that we exist to serve others,
teams—can also provide competent,
but our own bodies also need our attention, to be fed and exercised
even excellent, care. And their
and replenished. It’s not selfishness to divert a little attention from a
doing so frees you up to refresh
sick loved one to your own needs; it’s being your human self.
and recharge.
ƒƒ Figure out what “fills you up.”
Give thought to what replenishes
ƒƒ “You’re not uncaring.” Even in the midst of a crisis, the rest of life
goes on. Tending to your own needs momentarily isn’t a reflection on
the level of love and care you feel for another.
you. Walking? Reading? Knitting?
ƒƒ “You’re doing us both a favor.” The stronger and more fortified
Spending time with friends? Being
you feel, the better able you are to provide compassionate and
out in nature? Plenty of restorative
meaningful care. If you’re frazzled and dragging, you won’t function
activities don’t cost anything and
well. And that in turn can endanger the comfort and safety of your
are always available to you.
loved one, which is, after all, your ultimate goal.
Touching Lives
7
a
F E A T U R E
b
Making the Best
8
Touching Lives
Decision
When the
Time is Right
to Choose
Hospice
by Marlene Prost
S
loan Rogers took pride and comfort in the fact that
she personally cared for her husband, Dick, a once
vibrant attorney, in the last six years of his life.
But when he was moved to a nursing facility, she sensed
things slipping from her hands. The doctor said there was
little that could be done, and Sloan had to take a job to pay
the bills, leaving less time to be with Dick.
The idea of hospice had never occurred to Sloan. But
when a colleague shared her own family’s experience, she
felt the time was right. Sloan phoned the local hospice and
within two days, Dick was in the compassionate care of a
skilled hospice team.
“The reality was, he wasn’t getting better. Regardless
of the fight, he was still losing ground. I couldn’t be in
two places at once. Bringing hospice in helped to fill the
transitional gap, helping Dick to die with dignity. They did
a lot of things that were meaningful to him. I saw it as a
way of living with the challenges,” says Sloan, who has
published a memoir, And Then There Was Me: Living with
a Dying Loved One.
When Dick passed away seven months later at the
age of 71, Sloan had no regrets about any of her choices.
“I spent six years trying to make everything better for
Dick. I was consumed with getting him everything he
needed. Hospice was providing the things I would do if I
were there. It was an extra me, and I know it gave him
more quality of life,” she says.
“I didn’t understand what hospice was, or I would have
thought of it sooner. I realize now the magnitude of the
benefits it brings.”
“I didn’t understand
what hospice was,
or I would have
thought of it sooner.
I realize now the
magnitude of the
benefits it brings.”
Finding the best care
Like Sloan, many families are unfamiliar with all that
hospice can provide for patients with a life-limiting illness.
Sometimes, they have misconceptions that calling hospice
means giving up hope or even being disloyal to a loved one.
As a result, many of those families who do contact
hospice wait until the very last weeks of a loved one’s
life, when they could have benefited for months from the
support, expertise, and treatment hospice offers.
The most frustrating misconception about hospice is that
it means giving up on living and embracing death. That’s
Touching Lives
9
a
F E A T U R E
b
simply not true, says Ira Byock, MD, director of palliative
principle of therapeutics, or medical ethics,” Dr. Byock says,
care at Dartmouth-Hitchcock Medical Center and author
“just from Medicare.” In fact, some private insurers don’t
of the new book, The Best Care Possible.
require hospice patients to give up treatment.
“There’s a lot of misunderstanding about the
No one knows how long one has left to live—even
hospice philosophy, that you have to make the
someone in hospice care, Dr. Byock says. Some studies
shift to accept dying to receive hospice. We
have found that hospice and palliative care to treat
don’t require people to embrace their dying
pain and symptoms may prolong life. One 2007 survey
emotionally,” says Dr. Byock. If anything, hospice
of some 4,500 terminally ill patients found that those
focuses on making the most of however long one
in hospice care lived an average of 29 days longer.
has left to live.
The misconception, he says, is due to the
centered health care that focuses on the medical
Medicare rule that effectively requires people to
needs and concerns of persons at this stage of their
“I look at hospice as comprehensive family-
forgo treatments for their disease in order to receive
life. I try to reframe hospice care as simply an extension
hospice coverage. Medicare, which covers the large
of the best care possible, the most sophisticated support
majority of hospice patients, also requires that physicians
available to you and your family,” says Dr. Byock.
certify that a patient has six months or less to live, if the
Hospice patients receive a specialized form of medical
disease follows its natural course.
treatment called “palliative care,” which focuses on
“That ‘either-or’ model—either disease treatment
managing pain and symptoms and improving quality of life.
OR hospice care, but not both—doesn’t come from any
Despite Medicare’s payment restrictions, in hospital-based
Helping Everyone Feel Better
Many families have heard of hospice care and know it can improve quality of life in the last
months of life.
But fewer know what palliative care is, and how essential it is in the treatment of life-limiting
illness, whether in the hospital or at home receiving hospice care.
Palliative care is a medical specialty that grew out of hospice care in the United States. It has
become synonymous with hospice but is not restricted to hospice patients. Palliative care focuses
on treating the pain and symptoms related to chronic and terminal illness, including cancer, cardiac
disease, chronic obstructive pulmonary disease, kidney failure, and Alzheimer’s. In the hospital,
it helps patients who are undergoing treatment, as in managing the nausea related to cancer
treatment. In hospice, when aggressive treatment has ended, palliative care relieves pain and
symptoms to keep patients comfortable and allow them to function as normally as possible.
While palliative care is not aimed at curing a disease or prolonging life, studies have shown
that it may affect life expectancy. A 2010 study in the New England Journal of Medicine found
that advanced lung cancer patients who received early palliative care along with oncologic care
lived approximately two months longer than those who received just the standard treatment.
“Palliative care is a true medical specialty that focuses on goals and quality of life, instead of
just getting treatment,” says oncology nurse Theresa Brown, RN. “We have patients with active
cancer who will have palliative care so they are comfortable. With pain control, they can have a
conversation about their end-of-life care. Some feel more comfortable taking it one step at a time.”
10
Touching Lives
palliative care and a growing number of hospice programs,
treatment for medical conditions can continue if the patient
wishes, while a professional medical team monitors and
improves the patient’s and family’s comfort and well-being,
whether in the hospital or at home.
In some cases, a combination of palliative care, rest,
good nutrition, physical therapy, and emotional support
may actually help a patient regain the strength to resume
aggressive disease treatments.
Having the conversation
Once a family sees hospice as an option, the next step is
to have the conversation with their doctor, family members,
and the patient.
That can be the hardest step of all. Family members may
feel disloyal suggesting that a loved one stop pursuing a
cure. On the other hand, a patient might feel disloyal for
wanting to stop treatment.
“At some point, someone gets a gut feeling, this isn’t
it’s best said early,” says Dr. Byock. “It doesn’t diminish the
working. The patient may feel, ‘I need hospice,’ because
commitment to fight the disease. It simply acknowledges
he is suffering through everything we’ve tried to do to
that people have emotional and spiritual needs, too.”
save his life. I’ve also seen patients convinced they are
Sloan didn’t feel disloyal when she discussed hospice
going to be better and a family member says, ‘This is
with her husband, Dick. She felt relieved.
not working.’ Or the doctor can tell them, and the family
“Relief. That’s one word that describes hospice care. I
won’t believe it,” says oncology nurse Theresa Brown, RN,
cared for Dick for years. I never stopped fighting for his life.
author of Critical Care: A New Nurse Faces Death, Life,
And I didn’t stop when hospice came either,” says Sloan.
and Everything in Between.
Four years after Dick passed away, Sloan again faced
Brown’s heart went out to one woman who stood,
a choice.
forlorn, outside her husband’s hospital room. “She said,
This time, it was the physician who suggested that Sloan
‘I feel everybody knows something I don’t.’ I said, ‘No,
and her sisters enroll their 98-year-old mother in hospice.
that’s not true. But he is very sick.’ She had picked up
She had congestive heart failure and was growing weak but
on it. No one should have to feel like that.”
was still cognizant. They talked with her openly about the
Some doctors may hesitate to suggest families stop
benefits of hospice care.
treatment, because they don’t want to upset them or
“We’re a family where we tell each other the truth. We
discourage them. Physicians may also feel compelled to
told her we thought the extra support and care—and being
continue aggressive treatment.
part of the care—would be a real plus. We knew she would
“Doctors can be helpful by acknowledging that, even
relate to it on that level,” Sloan says.
with the best treatments possible, ultimately biology has
“I try to make all my decisions in life so I have no
the last vote. From the beginning, it’s very helpful if a
regrets. I did it unconditionally for Dick. I was there for
doctor makes explicitly clear, ‘We’ll care for you through the
my Mom. I can move on with my life because of that.” V
end of the illness. We’re not going to abandon you. We’ll
provide the best care we can, including hospice care.’ And
Marlene Prost is the editor of Touching Lives magazine.
Touching Lives
11
a
S P I R I T U A L
b
S U P P O R T
T
he life of every person has meaning and is a story
waiting to be shared. When one senses that life
is drawing to a close, there is much a loved one
wants to ask us and, even more, to tell us. That is why the
gift of listening with an open heart is all-important in this
time in a person’s life.
Life is filled with many complex experiences for most of
us, and we have many layers. Some we have shared easily
all our lives, some with only a few special friends, and some
we have never spoken about. This is the final opportunity
for us to come to a fuller understanding of who we are and
the gift we have been for others. There is good in every
person, and often it is only at the end of life that many
come to that realization, through the compassionate hearts
of those around them.
The father of a 3-year-old boy who was dying
of leukemia did not want to believe what was
What
the Dying
Teach Us
About Life’s
happening to his child. The nurse encouraged
the child to draw a picture for his dad about
what was happening to him. Wordlessly,
he drew a large ship on which a very sad mom and dad
were standing, with a tiny ship moving out of sight. The
little boy listened to the request of the
nurse, and the dad, who was a naval
officer, heard his child’s emotions
through his artwork.
by Trudy Harris, RN
12
Touching Lives
a
S P I R I T U A L
S U P P O R T
b
We listen to dying persons who are seeking answers to
the meaning of their lives, the questions about whether or
not they have mattered, and what memories they leave to
their loved ones. It is so important to be a quiet presence in
the face of this soul-searching experience and to allow the
person the review that comes to all of us. It is the tapestry
of our lives.
A 15-year-old boy who had suffered with a chronic
illness most of his life was beginning to die. His parents
had baptized him as an infant but had not raised him in
the church. They were desperate to “fix things” now. The
young boy knew more about God and how everything He
created works than all of us surrounding his bed.
When I asked the young patient to tell us what he saw
out the eight-foot window next to his bed, he did so very
simply. He told his parents, his priest, and his caregivers,
Drawing Out Feelings
When Words Are Not Enough
By Marlene Prost
“This is where God really lives.” He explained about the
Some feelings are beyond words. They are more
huge oak tree just outside his window, how it bloomed
easily expressed through the beauty of a painted
in spring and summer, and how its purpose was to be
landscape or family portrait, or through a familiar
beautiful. He said the tree lost all its leaves in autumn
folk song or childhood lullaby.
as they fell to the ground beneath it, creating a whole
Art and music are soothing and even healing
new look at the base of the tree. He told us about the
for those close to the end of life. Many hospices
birds and little critters that lived in the tree and found
provide art therapy and music therapy to help
food and comfort there. He explained that the fallen
patients express their feelings of hope, grieving,
leaves created mulch, which protected the small spring
and love of life.
flowers until it was safe enough for them to bloom again.
Art therapy can range from free-flowing
He saw homes being built in the mulch by new tenants
drawings to art projects, like memory books
and how they were safely concealed by all of its layers
and scrapbooks designed to create a legacy.
for winter. We sat silently at his bedside while he explained
The art process helps relieve stress while giving
to us, in the simplest of terms, how God cares for all of
patients some insight into their feelings, and
our needs in life, just as He does through the life cycle of
an outlet to share with others. Music therapy
the big oak tree.
includes song writing, improvisational singing,
I have learned that listening to a terminally ill person
and music appreciation, with no pressure on
is a two-way street. While we are listening to and being
performance. The focus is on relaxation, reducing
open to the experiences of the dying patient, we must
stress and anxiety, and social interaction. Music
at the same time keep our own hearts and minds open
is especially helpful for patients with Alzheimer’s
to what we can learn about ourselves, through their
and dementia because it prompts recall and
experience. Those who are reaching the end of their lives
language skills and has a calming effect.
have much to teach all of us. We must have open hearts,
The act of creating can be an emotional release
eager to learn. V
at any time of life. For those with life-limiting
illnesses, it offers a means of expression when
Trudy Harris, RN, is a former hospice nurse and the author of Glimpses
of Heaven and More Glimpses of Heaven.
words just are not enough.
Touching Lives
13
a
Q
&
A
b
Everything You Want to Know
(but may not want to ask)
by Larry Beresford
What is hospice care?
How do we pay for hospice care?
Hospice care is designed to cover all of the professional
Eighty-three percent of all patients cared for by U.S. hospices
services, treatments, and medicines that are reasonable
are covered by Medicare, the government-sponsored
and necessary to manage the care and comfort of a patient
health plan for people aged 65 and older. Patients who
with a life-limiting illness.
are enrolled on the hospice benefit offered by Medicare
The emphasis in hospice is on “palliative care,” or the
should have all care needs related to their illness met by
relief of pain and suffering, rather than continuing to cure
the hospice, with only a small co-payment.
an illness. Hospice services include professional visits by
nurses and other members of the hospice team to the
How does one qualify for coverage?
patient’s residence, along with needed medication and
Because people of Medicare age are more likely to have
medical equipment. When required to manage crises,
the most common conditions treated in hospice, including
the team provides inpatient hospice care.
cancer, advanced heart or lung disease, and dementia,
Medicare regulations shape how this service is provided.
Alzheimer’s disease and other incurable forms of dementia,
which are not always viewed by families as terminal
illnesses, can be appropriate diagnoses for hospice care—
although it is harder to know when to make the
referral to hospice.
Medicare’s hospice benefit applies
when two physicians certify that a
patient with a life-threatening illness
has a prognosis of six months or less
to live, assuming that the disease
runs its expected course. Accurately
predicting how long an individual might
live with a given condition is very
difficult. Medicare requires that
patients be sick enough that
it appears they have a life
expectancy of six months
or less. If they outlive this
prediction, they continue to
14
Touching Lives
a
Q
&
A
b
qualify for hospice coverage as long as they still appear to
have six months or less to live.
Medicaid and private insurance plans usually follow
similar requirements for their coverage of hospice.
What Questions to Ask
Choosing a hospice provider may be one of the most
What if we’re not ready?
important decisions a family ever makes.
For many patients and their loved ones, the hospice
In some cases, the choice is determined by your
decision is fraught with emotion and ambivalence. A
health plan or by relationships between your physician
prognosis of six months or less is hard to accept. But
or hospital and the hospice program. Ask your
remember, it is only a prediction, based on the physicians’
physician or hospital case manager for information
best medical judgment. With this prediction in hand, your
about hospice in your community. Maybe friends
care can shift to a focus on quality of life, control of pain,
or neighbors have had a hospice experience and
and achieving the most peaceful, comfortable, meaningful
can offer a recommendation. If the hospice has an
life possible in however many days remain.
inpatient facility, you could request a visit.
The first phone call to a hospice can often
When should we start talking about hospice?
be informative. How quickly do you reach a live
For many people, the decision to enroll in hospice care
person to answer your questions? How soon can
involves factors beyond the prognosis, such as how the
they schedule an admission visit? Do they explain
disease is impacting their lives and how well they and their
benefits, services, and coverage in language
families are coping.
you understand? How welcoming is the whole
In reality, many patients get referred to hospice very
encounter? When you meet with the intake worker,
late. More than one-third of hospice patients spend seven
don’t be shy about asking these questions:
days or less—their final seven days—under the support of
ƒƒ What is the role of the patient’s primary
hospice care. That is why hospices emphasize the value of
physician after hospice care begins?
considering, talking about, and planning for a hospice
ƒƒ What services do volunteers provide?
admission before it is needed. That way, when the time
What training have they received?
comes, the process will be smoother for everyone.
Although such conversations can be daunting, there is
no evidence that talking about hospice hastens the death
of a seriously ill patient—and some
evidence that patients on
ƒƒ How does the hospice respond to after-hours
questions?
ƒƒ What happens if a patient’s care can’t be
managed at home?
ƒƒ Does the hospice have an inpatient unit or
hospice might actually
relationships with nursing homes or hospitals
live longer than
for inpatient or respite care?
patients with
equally advanced
Perhaps the most important question is how
illnesses who
does the agency define and monitor the quality of
instead pursue
its services. Does it have data on quality, and does
aggressive
it make this information public?
treatment. V
A commitment to measuring and improving the
quality of care for patients at the end of life is a
hallmark of a hospice worthy of serving you or your
Larry Beresford is a medical journalist, hospice volunteer,
and author of The Hospice Handbook.
loved one at a most difficult time of life.
Touching Lives
15
a
L I V E
W E L L
b
Helping Veterans Find Peace
by Bob Calandra
F
or more than six decades, Dave, a former Marine,
So it’s important that
had kept his World War II memories sealed away.
nurses, social workers,
In all those years, he had never discussed with
chaplains, and
ns
Vetera
ng
enteri
e
hospic
e a
r
i
u
req
pe
ent ty
differ
n
e tha
of car
y
ilitar
a nonm
t,
patien
ing to
d
r
acco
s.
expert
anyone, not even his wife or Vietnam veteran son, what he
other hospice
saw during his time in the Pacific theater.
team members
But now in hospice care, the 84-year-old veteran decided
understand
to break his seal of silence. He started talking to his hospice
how to care for
social worker, Kate, about the different islands he had
veterans in other
fought on. He recalled the sound of shells exploding and
hospice settings. The
the crack of bullets passing overhead. Then he began to sob.
National Hospice and Palliative
Kate understood. Many veterans like Dave find that
Care Organization has started a program
hospice offers a safe, compassionate environment where
that reaches out to rural and homeless veterans in need
they can finally tell their stories of joy and heartache, sacrifice
of hospice care. It is also working to educate homeless
and heroism, without fear of judgment. It’s become an
shelter administrators, health care providers, and first
important and growing role for hospice, as more military
responders to help provide better care for veterans
veterans seek out the quality care hospice affords.
approaching the end of life.
Currently, only 4 percent of veterans facing life-limiting
Veterans entering hospice require a different type of
illnesses are cared for in Veterans Health Administration
care than a nonmilitary patient, according to experts. And
facilities, according to the Hospice Foundation of America.
veterans who have experienced combat need even more
specialized care. Getting veterans to tell their stories often
requires time and patience on the part of the hospice team.
Building a personal bond with the veteran is important and
can start by asking a simple question like, “Have you served
in a dangerous duty assignment?”
Then it’s just a matter of doing what Kate did with Dave.
She sat back and listened as the former Marine shared
stories of brotherhood, the friends he had made, and the
good times. He also talked about guilt for surviving when
others didn’t and sorrow for some of the things he had to
do. Ultimately, his tears seemed like a cleansing.
When he had finished, Kate detected a distinct change in
Dave’s demeanor. Sitting back in his chair, the veteran looked
relaxed, even relieved. Then he asked Kate if she would
come back the next week to talk with him some more. V
Bob Calandra is a freelance writer who specializes in writing about
health care issues.
16
Touching Lives
a
D E L A W A R E
H O S P I C E
b
Delaware Hospice Celebrates 30 Years of Caring
(continued from page 4)
Unique Programs for Families (cont.)
Children and teens coping with loss find special care at
Delaware Hospice’s New Hope Program, where counselors
guide children through the grief journey through home visits,
school groups, focused activities, and an annual summer
camp. New Hope Coordinator, Earline Vann, said, “It can be
challenging for adults to understand children’s grief, because
they grieve so differently. By providing a safe environment
for the children to express themselves, and by educating
adults about what to expect from their grieving child, their
burdens are eased and families are better able to cope.”
Family Support Services offer individuals in the
community help in coping with traumatic changes,
Camp New Hope keeps the campers busy with a strategic balance of
grief and memorial activities and fun, sports games or nature walks.
The kids might spend an hour sharing stories of their losses or painting
an ornament or memory box in honor of their loved one, and then
enjoy a game of soccer or a water balloon battle.
encouraging them to re-invest in life. Lunch Bunch Lectures,
workshops, and professional conferences, open to the
public, cover topics such as complicated grief, compassion
fatigue, or coping with the holidays. Lifeworks community
counseling helps anyone who might need more intensive
therapy. Bereavement services are offered to Delaware
Hospice family members for 16 months following the loss
of a loved one. Individuals are encouraged to attend
support groups, also open to the public, to share their
grief journey with others as a way of healing.
Veterans Outreach
Dr. Judith Pierson, Licensed Psychologist, leads the monthly
Lunch Bunch Lecture Series at the Family Support Center.
Delaware Hospice has participated in national initiatives
and has incorporated practices focused on better serving
veterans at end-of-life, educating the community about
special needs as well as the benefits available in order to
more fully honor them.
Delaware Hospice Center
With a $4 million capital campaign, Delaware Hospice
re-invested funds in the community with the creation of
the state-of-the-art Delaware Hospice Center in Milford.
Honoring Veterans in Hospice: Delaware Hospice proudly cares
for U.S. Veterans.
www.delawarehospice.org
17
a
D E L A W A R E
H O S P I C E
b
of patients and families and to create special programs for
our community.
Many families search for ways to express their appreciation
for the kindness and care their loved one received. They
may suggest Memorial Donations for a lasting tribute, or
purchase a commemorative brick at the Delaware Hospice
Center’s “Pathway of Memories.” When one couple, who
met at a Delaware Hospice Grief Support Group, decided
to marry, they suggested donations to Delaware Hospice in
lieu of wedding gifts. A young man employed by a motorcycle shop, who appreciated the care provided to his family,
The Center provides 24 hour, specialized in-patient hospice
suggested that an annual bike ride benefit Delaware
care by a team of professionals for patients who require
Hospice. Often, a surviving spouse will designate Delaware
short-term stays for symptom management. Sixteen
Hospice as a beneficiary of a portion of their estate.
private, patient-family suites in a peaceful, home-like
Annual fundraising events such as the Festival of Trees,
atmosphere welcome family members and allow them
Barbara Santoro Jazz Brunch, Mimi’s 5K Run and Family Fun
to spend quality time together. Visitors are encouraged
Walk, the Delaware Hospice 5K Run & Family Fun Walk,
to use family-oriented spaces such as the country kitchen,
and Golf Outings are made possible by generous corporate
living room, family room, children’s playroom or to stroll
sponsors and serve to raise funds and awareness of the
through the garden. Plans are underway for a second
not-for-profit’s mission.
Center to be built in New Castle County.
No matter the size, source, or motivation, donations
to Delaware Hospice have enabled the organization
Community Support
to meet its mission of providing the highest quality care
and to be a trusted partner and a resource for end-of-life
From the first fundraising mailing in 1982 and the first
challenges.
grant of seed money from the Episcopal Diocese, individuals
Learn how you can support Delaware Hospice
and organizations have faithfully provided the financial
by contacting the Development Office or visiting:
support for Delaware Hospice to care for a growing number
www.delawarehospice.org. V
Delaware Hospice Founding Member and
30-Year Member of the Board of Trustees, Gene Donnelly
Reflecting on the impressive impact on the community
Delaware Hospice has had since its founding in 1982,
Board Member Gene Donnelly said, “I think Delaware
Hospice is unique and outstanding in the state.
The organization has accomplished so much due to the
dedication and vision of its President and CEO, Susan Lloyd,
who has led the organization for 25 years, its committed and professional Board
of Trustees, and its quality staff. These factors have contributed over the past 30 years to
the high level of quality care and services. Delaware Hospice is a fantastic success story that
needs to be told over and over again.”
18
www.delawarehospice.org
a
D E L A W A R E
H O S P I C E
b
Volunteer Opportunities
ƒƒ Patient Care: Make “check-in
ƒƒ Development: Assist with
calls”, patient visits, provide
organizing and participate in
transportation, run errands, pray
fundraising events.
with patients, vigil support as
ƒƒ Bereavement: Prepare
ƒƒ Transitions: Visit clients, provide
transportation, and run errands.
ƒƒ Delaware Hospice Center
Volunteer Chaplains: Provide
patients near death, create and
bereavement mailings, conduct
spiritual support for patients and
deliver “Care Gifts” and “Lap Robes”.
bereavement calls, assist with
families.
ƒƒ “Vet-to-Vet”: Visit patients who are
bi-annual memorial services, “Next
ƒƒ RN Volunteers: Utilize nursing
veterans to provide opportunities to
Step Dinners”, “New Beginnings
skills by making check-in phone
talk about their military experiences.
Luncheons”, grief support groups,
calls to patients, patient care,
and general office duties.
and caregiver programs. These
ƒƒ Office Volunteers: Provide
clerical support, general office
duties, errands, and data entry.
ƒƒ Community Education: Health
Fairs, community presentations, and
Delaware Hospice Speaker’s Bureau.
ƒƒ Medical Records: Filing, assembly
activities provide RN’s with
of admission packets, and prepare
necessary clinical hours to
mailings.
maintain their nursing license.
ƒƒ New Hope (Children
ƒƒ Delaware Hospice Center:
Bereavement): Camp New Hope,
Receptionist duties, baking and
Camp Reunions, “New Hope
delivery of baked goods, sew,
Buddy”, and clerical support.
crochet, or knit lap quilts, clerical
support, patient and family support,
vigil support, delivery of medication,
and holiday caroling.
ƒƒ Staff Education: Provide general
office support.
ƒƒ Memory Bears: Use seamstress
skills to make Memory Bears
for bereaved families, organize
and track Memory Bear orders,
and create “Bear Kits” for
seamstresses. V
Volunteers play a major role in hospice care
and find it personally rewarding.
Contact the Volunteer Coordinator in your
county to learn more about Delaware Hospice’s
worthwhile volunteer opportunities.
www.delawarehospice.org
19
“ As a physician, it’s
my responsibility to
help people get better
when I can and to
manage their comfort
when I can’t.”
– Dr. Andrew Himelstein, Medical Director
Delaware Hospice
When curative treatment is no longer possible, Delaware Hospice
focuses on making patients comfortable—so their attention is on
quality of life and spending time with family.
Delaware Hospice offers exceptional care and support to anyone
coping with a life-limiting illness. Our team of professionals provides
hospice services at your home, facility, hospital, or at the
Delaware Hospice Center where patients and families will find
round-the-clock specialized care.
If you or someone you know needs help, call 866-402-3805 day
or night, or visit delawarehospice.org.