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Go Ahead...Give Yourself
a Break
Helping Veterans
Find Peace
The Gift of Listening
Holding Hands. Holding Hearts.
A Publication of Hospice of the Valley— Serving Santa Clara County Since 1979
Making the Best Decision
8 12
6
FEATURE ARTICLE
8 Making the Best DecisionWhen the Time is Right to Choose Hospice
by Marlene Prost
CO
NT
EN
TS
Welcome to Touching Lives
Dear Friends,
In recent healthcare media, “palliative care” has become
a popular buzz word. Clinical studies have proven that
this type of care improves quality of life and can even
lengthen survival. But with all this buzz, many people are
left wondering about the facts: What does palliative care
really entail? How do I get this care? Will my insurance pay
for it? When is it appropriate?
In “What is Palliative Care?” on page 3, Neal E. Slatkin, MD, vice president
medical services and chief medical officer of Hospice of the Valley, sheds light on
the nature of palliative care and how you or your loved one can make the most
of it. You’ll also read about the changing landscape of palliative care in our
community and how Hospice of the Valley will lead the way.
Hospice of the Valley has been a leading provider of palliative care to hospice
patients in Silicon Valley since 1979. For individuals who do not qualify for hospice
or are not receiving care in a hospital, palliative care has historically been out of
reach. In recognition of this need for outpatient palliative care services, Hospice of
the Valley embarked upon an ambitious program to open the first free-standing,
outpatient center in California that is specifically dedicated to the provision of
palliative care. Opening in 2012, Palliative Care Center | Silicon Valley™ will
support both the patient and caregiver in maintaining the highest quality of life
throughout all stages of serious illness.
Within these pages of Touching Lives, each and every article reflects the
multi-faceted approach to medical care provided in hospice and palliative medicine.
From spirituality and family dynamics to care for the caregiver and grief counseling,
we hope you feel the beauty of compassionate care come through these pages.
Warm regards,
Sally Adelus
President & Chief Executive Officer
3 What is Palliative Care?by Ana Hays
MEMORABLE MOMENTS
5 Bringing Dreams to Lifeby Marlene Prost
CAREGIVER’S CORNER
6 Go Ahead... Give Yourself a Breakby Paula Spencer Scott
SPIRITUAL SUPPORT
12 What the Dying Teach Us About Life’s Giftsby Trudy Harris, RN
Q & A
14 Everything You Want to Know (but may not want to ask)by Larry Beresford
LIVE WELL
16 Helping Veterans Find Peace by Bob Calandra
17 Gracie’s Oak Tree to Take Root in Irelandby Chelsea Byom
To subscribe to future FREE issues of Touching Livesmagazine, or to find out more about what services and programs Hospice of the Valley offers or to subscribe to our tri-annual newsletter, please call 408.559.5600 or visit our website at hospicevalley.org.
© 2012 SRI Media, Inc. 610.455.0706. All rights reserved. Unauthorized duplication is prohibited by law.
What is Palliative Care?by Ana Hays
D r. Balfour Mount, a Canadian
physician, is attributed with
coining the term “palliative
care” and starting the palliative care
movement in North America. Prompted
by the work of Dr. Elizabeth Kübler-Ross,
Mount sought out hospice physician
Dame Cicely Saunders at St. Christopher’s
Hospice in London in the 1970s.
Inspired by her, Mount decided to
adapt Saunders’ model in Canada
and created a specialized ward at the
Royal Victoria Hospital in Montreal.
Since Canada’s official languages
include English and French, and in
France hospice was used to refer to
nursing homes, Mount felt the term
“palliative care ward” would be most
appropriate.
The root word for palliation in
Latin, alliare, means to cloak or shield.
“At a simple level, we can imagine
that palliation protects people from the
ravages of illness. Palliative care means
different things to different people,
and modern definitions are rapidly
evolving,” says James L. Hallenbeck, MD,
in his book Palliative Care Perspectives.
The American Academy of Hospice
and Palliative Medicine provides this
definition: “The term palliative care
originally referred to the care of
patients with terminal illnesses, but
now refers to the care of patients with
life-limiting illnesses, whether or not
they are imminently dying.”
“Although individuals and organiza-
tions may define palliative care
somewhat differently, it is principally
directed to patients having serious
and life-threatening illnesses,” says
Neal E. Slatkin, MD, DABPM, vice
president medical services and chief
medical officer at Hospice of the Valley.
“The goal is always to take as much of
the dis-ease out of disease as possible.
This in many ways is accomplished by
placing the focus on the patient and
his or her family rather than on the
illness. Through advances in technology,
the science of medicine and ability to
treat illness has been ever improving;
but the art of caring for the patient in
many ways has lost ground.
Communication
between doctor and
patient has in some respects become
the victim of scientific advances and
declining physician reimbursements.
Diagnosis has come to rely more on
technology and less on the physician
speaking with the patient to elicit a
medical history. Lowered reimburse-
ments have at the same time caused
many physicians to see more patients,
and this in turn has decreased the
time available to spend with any
one patient. Palliative care seeks
to reinvigorate the declining art of
communication with the patient.
Good communication is vitally
important when people have serious
Dr. Neal Slatkin conducts an interview with a patient’s daughter to discuss concerns about her mother’s illness.
hospicevalley.org 3
H o s p i c e o f t h e V a l l e y
and advanced illnesses, not only to
understand their symptoms, but to
establish their goals of care and to fully
explore their treatment options. For
patients having serious illness, palliative
care is therefore not a replacement for
disease-oriented treatments, but a
complement to the other approaches
to medical care.”
According to Dr. Slatkin, palliative
care focuses on:
� The quality of communication
between the healthcare
practitioner and the patient
and his or her family. Palliative
approaches seek first to determine
what most bothers patients about
their illness; what about the whole
illness experience is reducing their
quality of life and their ability to
enjoy their time with family and
friends. Secondly, since the family
often plays such an important
caregiving role, they also need to
be brought in on the discussion of
treatment options and be educated
as a partner in care.
� Symptom management. Symptom
management often takes a back seat
to the treatment of the disease, and
yet good symptom management is
important not only to improve the
patient’s quality of life and ability
to function, but to optimize their
chances of responding favorably to
the treatment of the disease itself.
Symptoms such as uncontrolled
pain, anxiety, depression, constipation
and insomnia can rob patients of
precious time to be with loved
ones and even lower the will to
live. Palliative care is aggressive
in managing symptoms, whether
they arise from the illness itself
or its treatments.
� Difficult discussions. The focus
of disease management is always
on cure or life prolongation, but
sometimes even after these cease
to be achievable goals patients
continue to receive similar or even
more aggressive treatments because
no alternative is appreciated. While
no patient or family wants to hear
that a disease is progressing beyond
the point of medical control, an
understanding of this fact is vital if
informed decisions are going to be
made. Palliative care offers hope in
the face of failing medical therapies
by compassionately focusing on
treatment alternatives, life choices
and comfort.
“Palliative care focuses on making
‘the difficult discussion’ as honest
but as hopeful as possible, so that
patients and their families know
the options and are able to make
decisions that best suit their emotional
and other needs. The idea of palliative
care is not to limit care, but to provide
the most appropriate level of care,”
said Dr. Slatkin. V
Aware of the gaps in the medical care of seriously ill adults, members
of the Hospice of the Valley Board of Directors, executive leadership
team, the medical community and community at large identified the
need for outpatient palliative care in our county. In recognition of this
need, Hospice of the Valley has embarked upon the opening of the
Palliative Care Center | Silicon Valley™ in late 2012.
� Centrally located in the Silicon Valley medical community, the Center
will be the first free-standing outpatient center in California specifically
dedicated to providing palliative care.
� Patients treated at the Center may have a variety of serious or chronic
illnesses, such as cancer, congestive heart failure (CHF), chronic
obstructive pulmonary disease (COPD), kidney failure, and Alzheimer’s
Disease, among others.
� Physicians may refer patients to the Center for consultation regarding
treatment options and medical care for the treatment of pain and
other symptoms related to their disease.
� The Center will be committed to making its services available and
accessible to the culturally and economically diverse populations of
our community.
The Palliative Care Center | Silicon Valley™ is made possible through
generous financial support from the community. To learn more or to
donate, visit hospicevalley.org.
4 hospicevalley.org
H o s p i c e o f t h e V a l l e y
by Marlene Prost
B uddy had a lifelong dream
—to someday meet Dolly
Parton. But what were the
chances, now that he was in his 70s
and in hospice care, that he would
ever meet the famous country singer,
much less give her a big hug?
Sometimes dreams come true—
especially if hospice has anything to
say about it. When the hospice staff
learned of Buddy’s ambition, they
contacted Dolly Parton and her
associates in Dollywood, who rolled
out the red carpet for Buddy, while a
local hospice foundation covered
airfare and hotel accommodations.
And Buddy finally got his big hug.
We all have wishes of a lifetime
tucked away in our hearts—a bucket
list of things to do before we die,
or memories we hope to
someday revisit. For loved
ones in hospice care,
these wishes are even
more meaningful, and
realizing them is
especially sweet.
Not all dreams are
as elaborate as Buddy’s.
Hospice caregivers often find
imaginative ways to create special
moments for patients. Patricia, 42,
had always wanted to meet actress
Mary Tyler Moore, so her hospice
caregivers did the next best thing.
They contacted the actress, who
wrote Patricia a personal letter, and
they threw a “Mary Tyler Moore”
party, singing the television show’s
theme song and dressing Patricia in
the iconic Mary Tyler Moore wig.
At the end of life, some dreams
may have to be modified, but they
are no less precious. If a patient has
always dreamed of taking flying lessons,
hospice caregivers may arrange a flight
in a small plane. Instead of a grand trip,
a patient may take a peaceful drive to
see the autumn foliage. Family and
friends take on new importance at the
end of life, and a patient might want
nothing more than a good home-cooked
meal, a visit with an old friend, or an
afternoon baking cookies with a
grandchild. Some hospice patients
consider it a major goal to make it
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
renewed vitality and it lets others see
them, not in terms of their illness, but
as individuals with unique personalities
and interests.
“So many people in hospice care
have identified for so long with being
a patient. We take them back to
‘I’m still a person,’” says Vicki Costa,
a clinical social worker who works in
hospice care. “When patients are
given the opportunity to put the
focus on living, the quality of life
becomes better, as they focus on
enjoying each day.” V
Bringing to LifeBringing to LifeBringingDreamsFulfilling dreams is especially life-affirming for those who are living with a terminal illness.
Buddy meets his idol.
Touching Lives 5
a M E M O R A B L E M O M E N T S b
Go Ahead...L aura Patyk hated to leave her
mother’s bedside when she
had end-stage congestive
heart failure, just as two years earlier,
she’d hesitated to leave her father-in-
law, who had kidney cancer.
Both elders were in the good
hands of hospice programs in greater
Charlotte, North Carolina. But it always
felt selfish to her to take a break.
“And sure enough, I kept getting
sick and developed insomnia,” says
Patyk, who also cares for
six school-age children. “I learned the
hard way to take better care of myself,
no matter what.”
Burnout is a real risk for family
members caring for a loved one.
Professionals call it “compassion
fatigue”—caring so much that
you give yourself too little. It’s a
byproduct of the stress and fatigue
that can hamper caregivers, says
Patricia Smith, a certified compassion
fatigue specialist and founder of the
Compassion Fatigue Awareness Project.
Rejuvenate in ways that feel goodby Paula Spencer Scott
Give Yourself a Break
a C A R E G I V E R ’ S C O R N E R b
6 Touching Lives
“Stress is all about ‘too much’—
too much work, too much activity, too
much stimulus. Burnout is ‘too little’—
too little time, too little interest, too
little energy,” she says.
Whatever you call this distressing
syndrome, here’s a healthier approach:
� Be aware that this is a very
real issue. “The premise of
healthy caregiving is this: Fill up,
empty out. Fill up, empty out,”
says Smith. “Caregivers who are
at risk for compassion fatigue
empty out, empty out, empty out.
They never learned to fill up so
they have something to give.”
Warning signs of burnout
include isolation, bottled-up
emotions, persistent sadness and
apathy, lack of interest in self-care,
and persistent ailments such as
colds or gastrointestinal upset.
� Don’t think that “nobody can
do this but me.” It’s true that
you know your loved one better
than anyone, and you provide a
wonderful level of care as a result.
But others—family, friends,
community resources such as
nursing aides and elder companions,
or hospice and palliative care
teams—can also provide competent,
even excellent, care. And their
doing so frees you up to refresh
and recharge.
� Figure out what “fills you up.”
Give thought to what replenishes
you. Walking? Reading? Knitting?
Spending time with friends? Being
out in nature? Plenty of restorative
activities don’t cost anything and
are always available to you.
� Recharge in ways that feel
authentic to you. If your best
friend wants to drag you shopping
but you find it draining, you won’t
feel refreshed. Find what works for
you, not anyone else. “The art of
‘filling up’ is finding what brings
you peace, well-being, and a sense
of belonging,” Smith says.
� Take a break from technology.
There are other sources of stress
in our lives that can contribute
to burnout. “Because we all love
our smartphones and pagers, we
are ‘on call’ 24/7,” Smith says.
“Set boundaries. Check your
email at 9 a.m., noon, and 6 p.m.
only. Limit how much time you
spend on your cell phone. Take a
complete break from technology
on weekends.”
� Don’t be hamstrung by fears
of what you’ll miss. Patyk, the
Charlotte caregiver-mom, is now
caring for her widowed live-in
father, who has cardiac issues. But
this time around, she listens to her
instincts when she needs a break.
She goes bike riding around her
neighborhood and lunches regularly
with friends. She even recently got
away to the beach overnight.
“There’s always a little calm,
even in a storm,” she says. “Even
if something happened in my
absence, I have no regrets because
I know I’m doing and saying
everything I need to.” V
Paula Spencer Scott is a senior editor of the eldercare website Caring.com and a 2011 MetLife Journalists in Aging Foundation fellow.
What a Caregiver Needs to HearMany caregivers neglect their own needs because they worry
what others, including their loved one, will think if they take time
away from caregiving.
That’s why it’s so useful for caregivers to hear encouraging messages
of support from patients and the rest of the family.
� “You’re not selfish.” It may be true that we exist to serve others,
but our own bodies also need our attention, to be fed and exercised
and replenished. It’s not selfishness to divert a little attention from a
sick loved one to your own needs; it’s being your human self.
� “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’re doing us both a favor.” The stronger and more fortified
you feel, the better able you are to provide compassionate and
meaningful care. If you’re frazzled and dragging, you won’t function
well. And that in turn can endanger the comfort and safety of your
loved one, which is, after all, your ultimate goal.
Touching Lives 7
a C A R E G I V E R ’ S C O R N E R b
Making the Best Decision
8 Touching Lives
a F E A T U R E b
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.”
Finding the best careLike 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
“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.”
Making the Best Decision
Touching Lives 9
simply not true, says Ira Byock, MD, director of palliative
care at Dartmouth-Hitchcock Medical Center and author
of the new book, The Best Care Possible.
“There’s a lot of misunderstanding about the
hospice philosophy, that you have to make the
shift to accept dying to receive hospice. We
don’t require people to embrace their dying
emotionally,” says Dr. Byock. If anything, hospice
focuses on making the most of however long one
has left to live.
The misconception, he says, is due to the
Medicare rule that effectively requires people to
forgo treatments for their disease in order to receive
hospice coverage. Medicare, which covers the large
majority of hospice patients, also requires that physicians
certify that a patient has six months or less to live, if the
disease follows its natural course.
“That ‘either-or’ model—either disease treatment
OR hospice care, but not both—doesn’t come from any
principle of therapeutics, or medical ethics,” Dr. Byock says,
“just from Medicare.” In fact, some private insurers don’t
require hospice patients to give up treatment.
No one knows how long one has left to live—even
someone in hospice care, Dr. Byock says. Some studies
have found that hospice and palliative care to treat
pain and symptoms may prolong life. One 2007 survey
of some 4,500 terminally ill patients found that those
in hospice care lived an average of 29 days longer.
“I look at hospice as comprehensive family-
centered health care that focuses on the medical
needs and concerns of persons at this stage of their
life. I try to reframe hospice care as simply an extension
of the best care possible, the most sophisticated support
available to you and your family,” says Dr. Byock.
Hospice patients receive a specialized form of medical
treatment called “palliative care,” which focuses on
managing pain and symptoms and improving quality of life.
Despite Medicare’s payment restrictions, in hospital-based
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.”
Helping Everyone Feel Better
10 Touching Lives
a F E A T U R E b
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
working. The patient may feel, ‘I need hospice,’ because
he is suffering through everything we’ve tried to do to
save his life. I’ve also seen patients convinced they are
going to be better and a family member says, ‘This is
not working.’ Or the doctor can tell them, and the family
won’t believe it,” says oncology nurse Theresa Brown, RN,
author of Critical Care: A New Nurse Faces Death, Life,
and Everything in Between.
Brown’s heart went out to one woman who stood,
forlorn, outside her husband’s hospital room. “She said,
‘I feel everybody knows something I don’t.’ I said, ‘No,
that’s not true. But he is very sick.’ She had picked up
on it. No one should have to feel like that.”
Some doctors may hesitate to suggest families stop
treatment, because they don’t want to upset them or
discourage them. Physicians may also feel compelled to
continue aggressive treatment.
“Doctors can be helpful by acknowledging that, even
with the best treatments possible, ultimately biology has
the last vote. From the beginning, it’s very helpful if a
doctor makes explicitly clear, ‘We’ll care for you through the
end of the illness. We’re not going to abandon you. We’ll
provide the best care we can, including hospice care.’ And
it’s best said early,” says Dr. Byock. “It doesn’t diminish the
commitment to fight the disease. It simply acknowledges
that people have emotional and spiritual needs, too.”
Sloan didn’t feel disloyal when she discussed hospice
with her husband, Dick. She felt relieved.
“Relief. That’s one word that describes hospice care. I
cared for Dick for years. I never stopped fighting for his life.
And I didn’t stop when hospice came either,” says Sloan.
Four years after Dick passed away, Sloan again faced
a choice.
This time, it was the physician who suggested that Sloan
and her sisters enroll their 98-year-old mother in hospice.
She had congestive heart failure and was growing weak but
was still cognizant. They talked with her openly about the
benefits of hospice care.
“We’re a family where we tell each other the truth. We
told her we thought the extra support and care—and being
part of the care—would be a real plus. We knew she would
relate to it on that level,” Sloan says.
“I try to make all my decisions in life so I have no
regrets. I did it unconditionally for Dick. I was there for
my Mom. I can move on with my life because of that.” V
Marlene Prost is the editor of Touching Lives magazine.
Touching Lives 11
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
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
What the Dying Teach Us About Life’s
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,
“This is where God really lives.” He explained about the
huge oak tree just outside his window, how it bloomed
in spring and summer, and how its purpose was to be
beautiful. He said the tree lost all its leaves in autumn
as they fell to the ground beneath it, creating a whole
new look at the base of the tree. He told us about the
birds and little critters that lived in the tree and found
food and comfort there. He explained that the fallen
leaves created mulch, which protected the small spring
flowers until it was safe enough for them to bloom again.
He saw homes being built in the mulch by new tenants
and how they were safely concealed by all of its layers
for winter. We sat silently at his bedside while he explained
to us, in the simplest of terms, how God cares for all of
our needs in life, just as He does through the life cycle of
the big oak tree.
I have learned that listening to a terminally ill person
is a two-way street. While we are listening to and being
open to the experiences of the dying patient, we must
at the same time keep our own hearts and minds open
to what we can learn about ourselves, through their
experience. Those who are reaching the end of their lives
have much to teach all of us. We must have open hearts,
eager to learn. V
Trudy Harris, RN, is a former hospice nurse and the author of Glimpses of Heaven and More Glimpses of Heaven.
Drawing Out FeelingsWhen Words Are Not Enough By Marlene Prost
Some feelings are beyond words. They are more
easily expressed through the beauty of a painted
landscape or family portrait, or through a familiar
folk song or childhood lullaby.
Art and music are soothing and even healing
for those close to the end of life. Many hospices
provide art therapy and music therapy to help
patients express their feelings of hope, grieving,
and love of life.
Art therapy can range from free-flowing
drawings to art projects, like memory books
and scrapbooks designed to create a legacy.
The art process helps relieve stress while giving
patients some insight into their feelings, and
an outlet to share with others. Music therapy
includes song writing, improvisational singing,
and music appreciation, with no pressure on
performance. The focus is on relaxation, reducing
stress and anxiety, and social interaction. Music
is especially helpful for patients with Alzheimer’s
and dementia because it prompts recall and
language skills and has a calming effect.
The act of creating can be an emotional release
at any time of life. For those with life-limiting
illnesses, it offers a means of expression when
words just are not enough.
Touching Lives 13
a S P I R I T U A L S U P P O R T b
Everything You Want to Know(but may not want to ask)
by Larry Beresford
What is hospice care?
Hospice care is designed to cover all of the professional
services, treatments, and medicines that are reasonable
and necessary to manage the care and comfort of a patient
with a life-limiting illness.
The emphasis in hospice is on “palliative care,” or the
relief of pain and suffering, rather than continuing to cure
an illness. Hospice services include professional visits by
nurses and other members of the hospice team to the
patient’s residence, along with needed medication and
medical equipment. When required to manage crises,
the team provides inpatient hospice care.
How do we pay for hospice care?
Eighty-three percent of all patients cared for by U.S. hospices
are covered by Medicare, the government-sponsored
health plan for people aged 65 and older. Patients who
are enrolled on the hospice benefit offered by Medicare
should have all care needs related to their illness met by
the hospice, with only a small co-payment.
How does one qualify for coverage?
Because people of Medicare age are more likely to have
the most common conditions treated in hospice, including
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
What Questions to AskChoosing a hospice provider may be one of the most
important decisions a family ever makes.
In some cases, the choice is determined by your
health plan or by relationships between your physician
or hospital and the hospice program. Ask your
physician or hospital case manager for information
about hospice in your community. Maybe friends
or neighbors have had a hospice experience and
can offer a recommendation. If the hospice has an
inpatient facility, you could request a visit.
The first phone call to a hospice can often
be informative. How quickly do you reach a live
person to answer your questions? How soon can
they schedule an admission visit? Do they explain
benefits, services, and coverage in language
you understand? How welcoming is the whole
encounter? When you meet with the intake worker,
don’t be shy about asking these questions:
� What is the role of the patient’s primary
physician after hospice care begins?
� What services do volunteers provide?
What training have they received?
� How does the hospice respond to after-hours
questions?
� What happens if a patient’s care can’t be
managed at home?
� Does the hospice have an inpatient unit or
relationships with nursing homes or hospitals
for inpatient or respite care?
Perhaps the most important question is how
does the agency define and monitor the quality of
its services. Does it have data on quality, and does
it make this information public?
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
loved one at a most difficult time of life.
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 if we’re not ready?
For many patients and their loved ones, the hospice
decision is fraught with emotion and ambivalence. A
prognosis of six months or less is hard to accept. But
remember, it is only a prediction, based on the physicians’
best medical judgment. With this prediction in hand, your
care can shift to a focus on quality of life, control of pain,
and achieving the most peaceful, comfortable, meaningful
life possible in however many days remain.
When should we start talking about hospice?
For many people, the decision to enroll in hospice care
involves factors beyond the prognosis, such as how the
disease is impacting their lives and how well they and their
families are coping.
In reality, many patients get referred to hospice very
late. More than one-third of hospice patients spend seven
days or less—their final seven days—under the support of
hospice care. That is why hospices emphasize the value of
considering, talking about, and planning for a hospice
admission before it is needed. That way, when the time
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
hospice might actually
live longer than
patients with
equally advanced
illnesses who
instead pursue
aggressive
treatment. V
Larry Beresford is a medical journalist, hospice volunteer, and author of The Hospice Handbook.
Touching Lives 15
a Q & A b
Helping Veterans Find Peace by Bob Calandra
F or more than six decades, Dave, a former Marine,
had kept his World War II memories sealed away.
In all those years, he had never discussed with
anyone, not even his wife or Vietnam veteran son, what he
saw during his time in the Pacific theater.
But now in hospice care, the 84-year-old veteran decided
to break his seal of silence. He started talking to his hospice
social worker, Kate, about the different islands he had
fought on. He recalled the sound of shells exploding and
the crack of bullets passing overhead. Then he began to sob.
Kate understood. Many veterans like Dave find that
hospice offers a safe, compassionate environment where
they can finally tell their stories of joy and heartache, sacrifice
and heroism, without fear of judgment. It’s become an
important and growing role for hospice, as more military
veterans seek out the quality care hospice affords.
Currently, only 4 percent of veterans facing life-limiting
illnesses are cared for in Veterans Health Administration
facilities, according to the Hospice Foundation of America.
So it’s important that
nurses, social workers,
chaplains, and
other hospice
team members
understand
how to care for
veterans in other
hospice settings. The
National Hospice and Palliative
Care Organization has started a program
that reaches out to rural and homeless veterans in need
of hospice care. It is also working to educate homeless
shelter administrators, health care providers, and first
responders to help provide better care for veterans
approaching the end of life.
Veterans entering hospice require a different type of
care than a nonmilitary patient, according to experts. And
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.
Veterans
entering
hospice
require a
different type
of care than
a nonmilitary
patient,
according to
experts.
16 Touching Lives
a L I V E W E L L b
G racie Adelaide McQuaid was born on December
16, 2010 at 3 pounds, 15 ounces. A day normally
filled with joy, Gracie’s birthday was filled with
mixed emotions for her parents Brendan and Dina McQuaid.
As early as 16 weeks in the pregnancy at Dina’s first
ultrasound, the doctors identified a fluid-filled cyst on the
back of Gracie’s neck, a cystic hygroma. Dina’s pregnancy
was filled with more ultrasounds and tests, each one
turning up a new developmental anomaly or a previously
revealed anomaly having cleared itself up.
“The way the problems seemed to resolve themselves—
it was truly a miracle. Even the doctors were surprised,” said Dina.
Despite the advanced screening available, doctors still
couldn’t determine the extent of Gracie’s congenital
defects until her birth. So on her birth day, tiny Gracie
was rushed away for over three hours to begin a battery
of tests, x-rays, and monitors that would keep her stable
and determine her condition.
“It was a very emotional experience for me to not know
what my baby looked like, or even touch her, for so long,”
said Dina.
In the days to follow, Gracie gradually put on weight
and stabilized enough to remove her IV lines. “I was finally
Gracie’s Oak Tree to Take Root in Irelandby Chelsea Byom
hospicevalley.org 17
H o s p i c e o f t h e V a l l e y
able to hold Gracie on December 23rd,” said Dina. “And
Brendan got the present of getting to hold her on Christmas
Day. From that point on, we were able to hold her and
change her diapers, feed her through her feeding tube,
take her temperature, and other small things you never
knew you would appreciate so much.”
When all the tests were completed and the doctors had
weighed in, it became clear that Gracie would constantly
be fighting the odds. “Her quality of life, at best, would be
‘very poor’ and Brendan and I agreed we would always put
Gracie’s long term quality of life as top priority, regardless
of our own needs to keep her with us,” said Dina.
On January 11, 2011, Gracie’s life support was
removed. “The doctors told us she could be gone within
a few hours or maybe even a few days. We immediately
had family photos taken and prepared ourselves to say
goodbye. But much to everyone’s surprise, she was still
with us,” said Dina.
“About a week after her life support tubes were removed,
we were approached by Hospice of the Valley about taking
Gracie home. We were very hesitant,” said Brendan. “In
the NICU, you’re just around the corner from the nurse in
case something happens. We didn’t want to bring Gracie
home and have to do it all on our own. But the Hospice of
the Valley nurse told us that it would be important to spend
this time as a family and reassured us that we would all have
the support we needed, for Gracie and for each of us.”
Gracie came home on Friday, January 21. Three days
later, Gracie passed away peacefully in Dina’s arms, while
Brendan caressed her. “The last thing she heard was her
mommy and daddy saying they loved her,” said Dina.
“We’re so thankful to Hospice of the Valley for helping
us to make the transition home. Looking back, we wish we
would have taken Gracie home sooner,” added Brendan.
“For us, one of the greatest benefits of utilizing Hospice of
the Valley was the support we received from the Community
Grief and Counseling Center. My daughter Deziree has
been meeting with her grief counselor Kristina Gatto
every other week since Gracie’s passing. It has helped her
significantly to learn to process her feelings and express
those feelings. Eventually I, too, went to Kristina for
counseling. I wasn’t going to, but I made a promise
to Brendan that I would go at least once.
And I am so glad that I went,”
said Dina.
18 hospicevalley.org
H o s p i c e o f t h e V a l l e y
Brendan, in his own way, has found means to cope with
the loss of Gracie. “I realized I would never be able to take
Gracie to my family’s home in Ireland, so I collected
clippings of her hair and fingernails and planned to bury
them somewhere on my family farm. It so happened that
we were planning a trip to Ireland in October 2011 for my
sister’s wedding,” said Brendan.
“Gracie is buried under this beautiful, old oak tree,” added
Dina, “and when the acorns started falling, I had this idea to
gather the acorns from Gracie’s oak tree and plant that very
same tree with her hair and nail clippings in Ireland. We
collected nearly 50 acorns and flew them to Ireland with us.”
This simple gesture of a tree planting has become a
source of hope, remembrance, and solace for Brendan
and Dina’s family on both sides of the ocean. “For my
family in Ireland, it means a lot to have Gracie there
with them. It gives them a way to feel connected and like
they’re helping us,” said Brendan. “My dad and my two
brothers are each nurturing these acorns for the next year
to grow them into saplings. Next year, we’ll return to
Ireland and plant the sapling on the farm with Gracie.
As Gracie’s oak tree grows, we’ll remember Gracie and
always have her with us, and she’ll always be at home in
California and in Ireland.” V
Brad Leary, LCSW, director of social services and counseling
at Hospice of the Valley, offers ten ways to cope with the
loss of a loved one, many of which Dina and Brendan
found helpful in navigating their journey through grief.
1. Keep a diary of your feelings.
2. Write a poem, short story or song about
your loved one.
3. Listen to a favorite song.
4. Plant a tree or flowers in memory of your loved one.
5. Watch a funny movie.
6. Plan to be with a friend on special anniversary
dates or do something special to comfort yourself
or to remember.
7. Make and decorate a memory box and put special
objects inside.
8. Make a donation to a charity in your loved one’s name.
9. Carry a reminder of your loved one in your pocket.
10. Seek and accept support from a trusted friend, church
clergy, professional counselor or support group.
The Community Grief & Counseling Center™ is a
special place for those who are experiencing loss. Known
as one of the most extensive grief counseling programs in
Northern California, the Center offers a wide range of
community educational programs and workshops.
� Our services for children and adolescents include grief
counseling, and an expressive arts program provides the
opportunity for children and teens to creatively explore
feelings and emotions in a safe and comfortable space.
� For adults, the Center provides one-on-one counseling,
and loss-specific support groups to help individuals
develop skills that help reconcile loss and reengage in life.
� Grief counselors are licensed and professionally trained
therapists or supervised marriage and family therapist
interns/trainees.
� All services are available to the community on a sliding
scale and families of Hospice of the Valley patients can
receive services at no charge for 13 months after the
loss of a loved one.
To learn more about the Community Grief &
Counseling Center, call 408.559.5600
or visit hospicevalley.org/griefsupport.
Coping with Grief
hospicevalley.org 19
H o s p i c e o f t h e V a l l e y
The Hospice of the Valley Pet Companions offer love, affection, and a furry friend to patients
and families. Dogs are specially trained to be sensitive to patient needs. When dealing with
serious illness, a visiting pet can bring comfort and relief. Pictured are (L to R) volunteers
Krista Salas and Ann Begun with their dogs Luke, Rue, and Hope.
To learn more about volunteer opportunities at Hospice of the Valley, visit hospicevalley.org/volunteer.
4850 Union Avenue | San Jose, California 95124
408.559.5600 | hospicevalley.org
