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Quarterly Newsletter Summer 2015
1
“Life isn’t about
finding yourself. Life is about creating
yourself”
– George Bernard Shaw
Editor’s Note
Dear members,
Welcome to the second edition of the SFBA HPNA Quarterly Newsletter. Thank you for the warm and positive feedback on our first issue – we are glad you enjoyed it and hope to continue engaging you! Now, summer is the season to refresh the mind and soul, and what better way to do this than to gain new wisdom and knowledge?
We are excited to present an extraordinary lineup of articles in this newsletter, with topics ranging from offering hospice services in prisons to hospice for animals and featuring opinions from cutting-edge leaders in their respective fields. The various topics addressed are pressing, the solutions innovative and caring, in line with the true hospice and palliative care spirit.
Please reach out to me at [email protected] with any comments, questions, or submissions –
we would love to hear your thoughts and always welcome your comments. If you would like to contribute to any of the quarterly sections, email me with your submission and let me know the section you would like to be featured in.
Yours,
Fortunella Gozal Melul, RN,
BSN, BS, CHPN
HPNA Approved Educator,
ELNEC trained.
Editor in Chief, SFBA HPNA
Newsletter
Contents
Editor’s note ● p.1
The Expert’s Point of View ● p. 2
Get to Know Your Team ● p. 4
Hospice for Animals ● p. 6
Pet Loss and Grief ● p. 8
Teamwork ● p. 10
Spiritual Corner ● p. 12
Palliative Care around the Globe ● p. 14
Culturally Speaking ● p. 15
Your Work is Art ● p. 17
Learn & Enjoy ● p. 20
*Special thanks to all the article contributors and to Or Gozal, Stanford University, for her help designing the newsletter for PDF format. Send your input and submissions to: [email protected]
Quarterly Newsletter Summer 2015
2
About a year ago I was
making plans to walk the red
carpet with hopes of bringing
home the Oscar for my
documentary Prison
Terminal: The Last Days of
Private Jack Hall. The film
covers the tough subject of
dying while incarcerated.
While my documentary did
not garner the much-coveted
gold statuette, what I have
been doing with my film after
leaving Hollywood with my
nomination has been more
rewarding than the Oscar in
ways never imagined.
You see, I’ve been screening
my film at prisons across the
country, taking the goodness
of prison-based, prisoner-run
hospice to correctional
facilities and hopefully causing
much needed change in a
system challenged with
properly caring for their
terminally ill.
We all know the statistics
about the rate of our
imprisonment compared to
the rest of the world and it's
nothing to be proud of. For
being the land of the free we
have more people behind bars
than most countries do
combined – and our
imprisoned citizens are
quickly growing old.
One statistic currently seeping
into our collective
consciousness has been the
growing number of elderly
populating our prisons.
Whether attributed to our
harsh sentencing practices or
our tough-on-crime policies,
the sad truth is our
correctional system remains
unmoored as this silver
tsunami quickly swells on the
horizon.
As our prisoners age,
succumb to disease, or both,
the system is failing to
provide them with a dignified
death while incarcerated.
Many would ask why do we
need to provide dignity in
death for people who may not
have had the same concern
for their victim? To them I
simply say as a society we
need to be better than these
people when they committed
their crime; a notion that is
tough to swallow but painfully
necessary if we are to move
forward as a civilized nation.
In my nominated film, I
follow prisoner Jack Hall, an
eighty-two year old, WWII
veteran from his initial
terminal diagnosis to his final
breath. Jack was unfortunate
The Expert’s Point of View:
Edgar Barens
“With the adoption of
prison hospice, dying
alone need not be a
concern of the ailing
prisoner or their
family and friends”
Quarterly Newsletter Summer 2015
3
in that his final days were
destined to occur behind the
walls of the oldest
penitentiary west of the
Mississippi. But by the same
token he was one of the
fortunate few prisoners to die
in a prison hospice program,
one of a handful that exist
within the eighteen-hundred
correctional facilities that dot
our nation.
Most terminally ill prisoners
either die alone in their cells
or offsite at a state or local
hospital, shackled to a bed
with a guard outside their
door. No visitors allowed.
With the adoption of prison
hospice, dying alone need not
be a concern of the ailing
prisoner or their family and
friends.
Unlike most civilized
countries, the US correctional
system does not routinely
grant compassionate
commutation. Consequently,
the creation of prison hospice
programs is even more
pressing as over 25% of all
prisoners will be considered
elderly by 2020.
I made Prison Terminal: The
Last Days of Private Jack Hall
to spread the good work of
prison hospice and to ease the
apprehension many
correctional facilities have
about starting a hospice of
their own with prisoners
trained in end-of-life care.
Yes, there are certain rules
that need to be bent, new
security concerns to be
addressed. But as the few
prisons who’ve adopted such
programs can attest to; the
benefits have paid back ten-
fold. Not only do the patients
receive extraordinary end-of-
life care, but the benefits
ripple out throughout the
prison; changing ever so
slightly the character of the
prison.
For the bean counters out
there the good news is that
this type of program costs
little to nothing to implement;
saving the taxpayer the
expense of unnecessary
medication when quality of
life versus quantity becomes
the deciding factor.
For many prisoner hospice
volunteers the program has
allowed them to be loving and
compassionate in a world
devoid of both. Caring for
another human being redeems
them in ways no other
rehabilitation program can.
The vast majority feel they are
finally giving back with
kindness and concern for the
damage and destruction they
left in the wake of their
crimes.
I recently returned from the
second leg of my 50 Prisons
in 100 Days Tour, where I
successfully screened my film
in numerous prisons across
the country; sharing the story
of prisoner and patient Jack
Hall with staff and prisoners.
Quarterly Newsletter Summer 2015
4
Get to Know Your Team:
Alice Teeter
With thousands of miles
traveled and many more
prisons to visit, some have
said I have my work cut out
for me. To cause any change
in a system that resists it at
every turn will be next to
impossible. That is very true.
But I was also told nobody
wanted to watch a film about
dying prisoners and I almost
won an Oscar for mine.
About Edgar:
Edgar A. Barens is an
independent documentary
filmmaker and Visiting Media
Specialist at Jane Addams
Center for Social Policy and
Research at the University of
Illinois at Chicago. His film
was nominated for an Oscar
in 2014 in the Documentary
Short Subject category. The
Prison Terminal 50 Prisons in
100 Days Tour is supported
with a grant from the
Fledgling Fund and is
distributed by The Cinema
Guild at
www.cinemaguild.com.
Email:
www.prisonterminal.com
Fortunella: Tell us about
your background, your story:
Alice: Nursing is my second
career; I returned to the Bay
Area and started my
prerequisites in 2007 after
living in New Orleans during
Katrina, Rita, and the
aftermath. I precepted in
critical care at San Francisco
General Hospital (SFGH) in
my senior rotation at City
College of San Francisco
(CCSF) and returned for my
first RN job; I was introduced
to palliative care there. I
found that the CCU was not
the right place for me, I heard
“you don’t have time to talk
to your patients” too many
times. When I left SFGH I
knew I had to rethink nursing
and my place in it; a good
nursing friend recommended
I talk to the director, not
about a job, but the work.
The director generously gave
me two hours of his time to
become acquainted with the
facility, patients, staff,
philosophy… I felt like I was
coming home. I took the
California State University
San Marcus (CSUSM) RN
online training course and
started studying to challenge
the CHPN exam and found
my first hospice case
management job, which I
love. It’s incredible to be a
part of end of life care.
F: How did you hear about
the SFBA HPNA Chapter
and when did you first
become a member?
Quarterly Newsletter Summer 2015
5
“The interdisciplinary
team is the best part of
hospice work … I never
feel alone”
A: I became a member of
HPNA when I was preparing
for the certification exam in
June 2014. I knew there was a
local chapter but didn’t know
how to get active. I’d had my
first training days of my
current position with Kim
Carroll, our East Bay member
at large, and she encouraged
me to get involved; our
President Elect was also a
nursing mentor. We had a
serendipitous conversation
about her involvement after I
had identified my 2015
professional goal as “doing
more in local
Hospice/Palliative Care
(H/PC)
organizations/conversations.”
She referred me to the current
president to discuss the
position and I was excited to
be considered. The first
meeting I attended was
humbling again, great nurses
with decades of experience. I
am really lucky to be able to
serve.
F: What are you looking to
accomplish as Secretary of the
chapter?
A: I love that the HPNA
national and regional chapters
work on nursing education. I
don’t think H/PC was
mentioned in my ADN or
BSN coursework. I’m a
gerontology MSN major now
and I don’t get to learn about
H/PC in my traditional
nursing education. I want to
be part of supporting that
nursing education. Dying isn’t
a part of current nursing
education, but every one of
our patients will die. I’d like to
support new nurses in this.
F: What is teamwork for you?
A: As I finish my first year of
hospice nurse case
management and now train
and mentor new CMs and
hospice nurses, I remind
myself and them: “when you
get stuck, think about your
team; who do you need to
call?” Working with home
patients can be incredibly
challenging and it is an
amazing part of hospice work
to be able to call our social
worker in when our patients
and families are facing
eviction or other
socioeconomic stressors. Our
chaplain and I have had some
really incredible moments
both bedside during deaths
and also getting a different
perspectives during our team
meetings. I catch myself
trying to figure something
out, how to get something
done on my own, and then
remember I have our amazing
hospice aides, a team
manager, patient care
secretary, and of course our
team MD and pharmacists to
help me. The interdisciplinary
Quarterly Newsletter Summer 2015
6
Hospice for Animals:
Dr. Amir Shanan
team is the best part of
hospice work and I hope that
the success of the model will
be recognized in wider aspects
of healthcare. I never feel
alone.
F: So far, what has been the
most rewarding activity
you’ve done for the chapter?
The least?
A: Attending and supporting
the educational event for
nurses training for the CHPN
board was great. I loved
talking to nurses who are both
experienced and new to
H/PC about their goals. In
February I attended the 2015
AAHPM/HPNA annual
assembly Philadelphia and
soaked in as much education
as I could. Huge rooms full of
people excited about the
challenges and power of the
work we do, soul food.
The least? I’d like to do more;
I’m still finding a balance
between case management
work, MSN coursework,
teaching/mentoring, and
having a life. I want to
rephrase work/life balance to
life/work balance. I want to
help new nurses who
encounter “you need 1 year
experience” find a place to get
that experience so they can
serve their communities.
F: Share a positive thought
with our readers.
A: I recently spent time back
in New Orleans with some
very old friends who have
also made nursing a second
career. We talked about our
jobs and our nursing lives.
After some discussion about
our areas of practice (ED,
CCU/ICU) one looked up
and said “it is so refreshing to
hear a nurse say they love
their job!” Hospice and
palliative nursing has been a
great match for me where I
feel I can really serve our
patients and families’ best
interests. I absolutely love
what I do and hope that more
nurses engage in this difficult
but incredibly rewarding path.
Alice Teeter, RN PHN
CHPN
Secretary, SFBA-HPNA
Is animal life similar in value
to human life? Is animal
suffering similar to human
suffering? How can we know
if an animal is suffering too
much? When is euthanasia the
right choice for ending an
animal’s life? When is dying
without the benefit of
euthanasia the right choice for
an animal?
These difficult questions and
many others are ones highly
attached pet owners face as
they struggle to make the best
possible decisions for their
Quarterly Newsletter Summer 2015
7
“The support animal
hospice offers includes
comfort-oriented,
patient-centered
medical treatment and
nursing care”
seriously-ill or extremely
elderly furry [or feathered]
loved ones. For many of
them, functioning as their
companion animals’ end of
life family caregivers is a
lonely, gut wrenching
experience, often followed by
self-doubt or guilt lasting
decades.
The mission of animal
hospice and palliative care is
to provide these families with
the support they deserve and
need in order to meet their
goal of providing the best end
of life care for their animals.
Much like in human hospice,
the support animal hospice
offers includes comfort-
oriented, patient-centered
medical treatment and nursing
care; active family
participation in medical
decision making; and
caregiver emotional and
spiritual support.
In 2009 I founded the
International Association for
Animal Hospice and Palliative
Care to promote animal end
of life care education,
research, and public and
professional discourse. I saw
the need for a broad
professional community,
inclusive in its philosophy and
committed to representing
different professional
disciplines and diverse
viewpoints of animal
hospice/palliative care, end of
life, and death and dying.
In 2013 the IAAHPC
published its Guidelines for
Recommended Practices in
Animal Hospice and Palliative
Care. The document, available
on the IAAHPC website,
www.iaahpc.org, is but a first
stab at establishing standards
of care for our field which is
growing rapidly and changing
daily!
The IAAHPC is now over
400 members strong,
expanding its presence
outside of North America and
working diligently on exciting
projects like advanced training
programs for professionals
from different disciplines and
translating animal hospice and
palliative care information to
other languages.
About Dr. Shanan:
Dr. Shanan has been
practicing veterinary medicine
since 1985 and pioneering end
of life care for animals since
1994. He is currently leading
the development of an animal
hospice certification program,
is the co-editor of the book
Animal Hospice and Palliative
Care: Principles and Practice
[Wiley, late 2016], and is a
participant in the American
Animal Hospital Association
Quarterly Newsletter Summer 2015
8
Pet Loss and Grief: Judy Tatelbaum
expert panel developing end
of life care practice guidelines
for the veterinary profession
[AAHA, early 2016]. He can
be reached at:
pethospicechicago.com and
In Memory of Noodles,
5/25/92 – 5/12/06
Noodles was my female black
lab mix, whom I often called
“The Divine Miss N.” She
was a remarkably loving,
responsive, sensitive dog who
served as my co-therapist for
many years. She was like my
child and a constant
companion. In the weeks
before she died I spoke to her
often about who she was to
me, and how much I loved
her and appreciated having
her for nearly fourteen years. I
told her she was the love of
my life. One day I said it was
my privilege to have known
her. She had made such a
difference in her lovingness to
people. Her tail moved up
and down. She got it.
And then there was the
moment of truth. Noodles
lost her ability to walk on the
flats of her feet. Because of a
neurological misconnection,
she was trying to walk on
curled toes and couldn’t. She
had lost her appetite
completely, and was now
being fed mashed food
through a tube that looked
like a cake decorator. Her eyes
were cloudy. She often
panted. The last straw was
that she smelled like a dead
animal; her mouth had a
rancid smell from some kind
of infection.
I always prayed she’d have a
natural death. I never wanted
to be responsible for
euthanasia, though I strongly
believe in it. The morning
after I smelled that disgusting
smell in my beloved dog’s
mouth, I woke up knowing,
whether I wanted to or not, I
had to put Noodles to sleep
now. Our Vet came to our
house a few hours later.
Noodles was lying asleep on
her quilt in the guest room,
where she had begun sleeping
some months before. (I hated
and never understood why
she stopped sleeping on a
quilt on the floor next to me
in our bedroom.) My sister-in-
law, Lynn, sat on the bed
above Noodles, and I lay next
to her on the floor holding
her head in my arms. (My
husband chose not to be
present, which I understood.)
The Vet quietly shaved her
arm to look for a vein. We
talked about how her veins
had always been hard to find.
He gave her the shot, and her
head fell back a little in my
arms. Her whole body
softened and relaxed. Only
Quarterly Newsletter Summer 2015
9
then did I realize how tense
she must have been. Her
beautiful rich brown eyes
were open after she died. I
liked that. Lynn didn’t. The
Vet said it takes muscle
control to close eyes. I
couldn’t get over that
Noodles looked quite
beautiful dead. She looked
more beautiful dead than
alive, as alive she looked
fragile, shaky, skinny and
matted. I always feared that
my dog would look like the
horrifying sight of animals we
see on the side of the road—
raccoons or squirrels lying on
their backs with claws in the
air and mouths open as if to
scream. She didn’t look
anything like that. She looked
as if she’d fallen asleep with
her eyes open. Her fur looked
soft again. She was at peace.
After we had talked quietly
about Noodles, saying how
wonderful a dog she was, the
Vet got ready to wrap her in
her quilt and carry her to his
car. The vet commented that
she was one of the loveliest
animals he had ever known.
And she was. He carried
Noodles outside and put her
in the back of his SUV. She
was to be cremated. I did not
keep her ashes. She lives in
my heart forever.
Several days later I missed
Noodles so much, I forced
myself to put into words what
I felt. Over and over I said
aloud, “I miss you so much. I
can’t bear it.” I cried much of
that day. But the next day, to
my surprise, I didn’t feel like
crying. I had honored one of
the suggestions I give clients
and readers for dealing with
grief, and it worked. I owned
my feelings instead of
pretending or denying. I
expressed my feelings
thoroughly – as
uncomfortable as these
feelings were. It is true:
Feelings expressed do
disappear.
I soon recognized that I was
beginning to bear the
unbearable. In the next weeks
I wrote, I still miss Noodles
often during the day, but I
don’t feel pain every time I
think of her. I enjoy her
photographs now. Sometimes
I can remember her and tell
anecdotes about her with joy.
My sense of loss is still
present. I’m aware of her
absence – sometimes many
times a day - but noticing is
no longer unbearable.
I tell my story to make the
point that feelings at first may
feel unbearable. But, if
allowed and acknowledged,
they begin to change --
sometimes ever so slightly,
sometimes dramatically. The
unbearable can become
bearable. Moreover, as we
face our truth instead of
denying it, we begin to
develop more resilience.
Expressing our feelings
enables us to find within us
more courage to face the loss
in our lives.
Quarterly Newsletter Summer 2015
10
Teamwork: Dr. Betty Ferrell;
Dr. Elaine Wittenberg
In contrast, avoiding our
feelings, pressing them down
under the surface or running
away from them, they haunt
us, disturb us, and keep us in
a state of suffering. Feelings
denied just don’t go away, no
matter how much we wish
they would simply evaporate.
I am convinced that it is in
acknowledging how hard our
grief is to bear that we begin
the process of tolerating it.
And ultimately, this is how we
heal. Soon I found myself
longing to have a dog again,
longing for the love and
companionship that only a
beloved pet can give. Several
months after Noodles died I
adopted two year old Honey,
a yellow lab mix. Honey’s
unfailingly love has been the
final step in helping me heal
from the loss of Noodles. I
still think of Noodles often
but most times it is with joy,
not with pain. I have no
regrets.
I write this to remind us that
we each have within us the
capability to face terrible
circumstances, painful loss,
great sorrow. Yet, most of us
cannot believe that we could
possibly have the courage. We
just don’t trust ourselves to
face and live through these
experiences, let alone to
eventually heal. Yet it is in
allowing our feelings that we
demonstrate the courage it
takes to heal from grief.
About Judy:
Judy Tatelbaum, L.C.S.W, is a
psychotherapist in Carmel,
CA, and author of The Courage
to Grieve and You Don’t Have to
Suffer.
www.judytatelbaum.com
Palliative care services can
reduce the burden of care for
patients and families, but only
if health professionals work
together to elicit patient goals
that line up with treatment
options, effectively
collaborate to develop holistic
plans of care, and work as
part of the patient’s care team
to communicate a consistent
message about prognosis,
appropriate treatment
options, and end-of-life care.
The National Consensus
Project for Quality Palliative
Care guidelines articulate how
vital interprofessional
collaboration is to all aspects
of care.
The COMFORTTM SM
communication curriculum is
a theoretically grounded
curriculum for teaching
palliative care communication
Quarterly Newsletter Summer 2015
11
and can be used to achieve
interprofessional
collaboration. COMFORT is
an acronym that stands for C-
Communication, O-
Orientation and opportunity,
M-Mindful presence, F-
Family, O-Openings, R-
Relating, and T-Team. The
curriculum is not a linear
guide, an algorithm, a
protocol, or a rubric for
sequential implementation by
clinicians, but rather a set of
holistic principles that are
practiced concurrently and
reflectively during
patient/family care. By
placing the patient and family
at the center of the healthcare
team, and adapting
communication to their needs
and preferences, providers
can produce a balanced,
holistic approach to end-of-
life care and delivery.
Earlier this year, we held a
two day course,
COMFORTTM SM
Communication for Palliative
Care Teams, designed for
interprofessional hospital-
based palliative care teams in
the state of California. The
curriculum was based on
COMFORT and developed
by an interprofessional faculty
with expertise in
communication, clinical care,
and education. Nurses,
physicians, social workers,
and chaplains learned side-by-
side about team
communication and were
provided with teaching
materials, training videos, and
supplemental resources to
integrate communication skills
building into existing clinical
settings. Currently, we are
accepting applications for
COMFORTTM SM
Communication for Oncology
Nurses, a professional training
program funded by the
National Cancer Institute.
The curriculum covers the
continuum of cancer care
(diagnosis, treatment,
survivorship, recurrence, and
end of life) and four national
courses are planned over the
next four years.
An additional tool based on
the curriculum is a
smartphone or iPad app called
Health Communication:
Building Professional Skills.
This app presents free, easily
accessed prompts to help
providers engage in palliative
care communication practices.
The menu includes a
communication toolkit,
difficult scenarios and
communication strategies, and
a plain language planner for
talking about pain and
medications. Communication
strategies include instruction
on what to observe, what to
ask, and how to respond
based on the context.
Information about the
curriculum, course offerings,
and other resources are
available at the Palliative Care
Communication Institute
(PCC) website
(www.pccinstitute.com).
Quarterly Newsletter Summer 2015
12
Spiritual Corner: Randy Wilson
Flashcard
Educate your community on 11 Hospice Truths: 1. Hospice is NOT giving up. 2. Hospice is NOT limited to cancer patients. 3. Hospice is NOT a place. 4. Hospice neither hastens nor prolongs life. 5. You can even keep your own doctor. 6. Patients can initiate the hospice conversation. 7. You are free to leave hospice at any time. 8. You will still receive other medical care while in hospice. 9. You are not required to provide a DNR (Do Not Resuscitate). 10. Not all hospice are the same. 11. Intellectual and developmentally disabled people can receive hospice care.
(Excerpt from Dispelling Hospice Myths, by The Hospice
Foundation of America)
About Dr. Ferrell and Dr.
Wittenberg:
Dr. Betty Ferrell, Professor
and Director, and Dr. Elaine
Wittenberg, Associate
Professor, are at City of Hope
National Medical Center in
the Division of Nursing
Research and Education. Dr.
Ferrell is a nurse researcher
with more than 35 years
experience in hospice and
palliative care, a fellow of the
American Academy of
Nursing, and was named one
of 30 Visionaries in the field
by the American Academy of
Hospice and Palliative
Medicine. Dr. Wittenberg
holds a PhD in
Communication and is co-
author of three books on
palliative care communication
and lead editor of the
upcoming Textbook of Palliative
Care Communication.
(L to R: Ferrell, Wittenberg)
A wise executive director of
a hospice once asked me
“Do you know how the
nurses here would describe
the role of a chaplain?” I
confessed I didn’t and so I
went and asked. To my
surprise, the nurses’ answers
were not what I thought
they would be. I had
wrongly assumed they
would have had the same
understanding of the role
that I did. This led me on a
search of how to describe
the role of the chaplain in a
manner that would give
them a simple way to
describe the role, and at the
same time help patients
understand that facing death
can bring up questions that
can only be addressed
through the filter of
spirituality.
When researching the
meaning of the word
‘spirituality’ I encountered
different definitions on the
internet. Some of them are
below:
“Spirituality is that which
gives meaning to one's life
Quarterly Newsletter Summer 2015
13
and draws one to transcend
oneself. Spirituality is a
broader concept than religion,
although that is one
expression of spirituality.
Other expressions include
prayer, meditation,
interactions with others or
nature, and relationship with
God or a higher power.”
“Spirituality is the aspect of
humanity that refers to the
way individuals seek and
express meaning and purpose
and the way they experience
their connectedness to the
moment, to self, to others, to
nature, and to the significant
or sacred.”
“…the process of deriving
meaning, purpose, and
direction in one's life; and
-involves an increasing
openness to exploring a
relationship with an intangible
and pervasive power or
essence or center of value that
exists beyond human
existence and rational human
knowing.”
“Spirituality is recognized as a
factor that contributes to
health in many persons. The
concept of spirituality is
found in all cultures and
societies. It is expressed in an
individual's search for
ultimate meaning through
participation in religion
and/or belief in God, family,
naturalism, rationalism,
humanism, and the arts. All of
these factors can influence
how patients and health care
professionals perceive health
and illness and how they
interact with one another”
In the field, “religious” often
gets confused with spiritual.
Over the years working both
in churches and in hospice I
have realized that when asking
people what they believe
about God, (or if they even
believe in a God) most times I
had people tell me about their
church experience or lack
thereof. I listen and try to
learn and then sometimes I
will thank them for sharing,
and then say how hearing
their experience helps me
understand them. Then I will
ask if I can hear what they
think about God and not so
much about their church
experience. Often in an
awkward moment they will
blurt out they are not religious
but they are spiritual. More
recently, a patient was telling
me about their life and their
experience. Several times in
mid-sentence the patient
would stop and ask again and
again, “exactly what is your
role?” I finally discovered
their concern when they
finally asked me: “So you are
not going to try to convert
me?”
While the role of a chaplain
involves helping people with
religious questions, the areas
we may find ourselves
addressing often involves
other issues besides religion.
In fact, in the geographic area
where I work, survey after
survey reveals somewhere
between 75 -95% of people
self-disclose they don’t attend
Quarterly Newsletter Summer 2015
14
Palliative Care around the Globe:
Liliana de Lima
church regularly if at all. I
visited a good friend of mine
many years ago before I got
involved with Hospice, as he
was close to death, and he
said to me: “it’s hard to die.”
I don’t believe he was talking
about the physiological piece,
I think he was addressing the
“spiritual” side of dying. We
have much to learn from
those facing death, and as we
begin to explore the spiritual
questions not only will the
patients be helped but we will
be changed too.
As much as we all know death
is a certainty, the experience
of actually knowing ‘it is
happening to me and maybe
soon’ can be a very
disorienting experience. I
heard one person describe the
process of going through
cancer treatments and by the
end their having the need to
develop a new philosophy of
life because of the life
shattering psycho-social
experience. In the same way I
think for most people death
creates that same need for a
new philosophy of life. And
whether the individual uses
that search to reaffirm their
existing faith or life
philosophy or whether it
causes them to re-consider it,
in either case it is a spiritual
experience. And this is where
a chaplain or spiritual
counselor can be a helper,
walking with people through
the journey.
About Randy:
Providing pastoral care and
spiritual counseling since
1988, Reverend Randy Wilson
began working in hospice in
2011 after several decades
working in churches. He has
worked with a wide variety of
individuals from diverse faith
backgrounds in roles such as
spiritual counselor, hospice
chaplain, Pastor, and college
Professor.
These are exciting times for the advancement of palliative care (PC) around the world: In May 2014, the World Health Assembly – the supreme decision making body of the World Health Organization (WHO) – unanimously adopted a groundbreaking resolution called “Strengthening of palliative care as a component of comprehensive care throughout the life course.” The Resolution outlines clear
recommendations to the
United Nations Member
States, such as including PC in
all national health policies and
budgets, in the undergraduate
curricula for healthcare
professionals, and highlights
the critical need for countries
to ensure that there is an
adequate supply of essential
PC medicines, especially those
Quarterly Newsletter Summer 2015
15
Culturally Speaking:
Sandra Escalante
needed to alleviate pain, such
as opioids.
The Resolution emphasizes
the need to implement PC at
the primary care level,
including in community
centers and at home, such as
that provided by hospice
programs. This Resolution
carries great challenges as
well: according to the Global
Atlas of Palliative Care at the
End of Life, it is estimated
that every year over 20 million
patients need PC at the end of
life, of which 6% are children.
However, in 2011,
approximately 3 million
patients received PC and only
1 in 10 people in need
received it.
Although most PC is
provided in high-income
countries, almost 80% of the
global need is in low- and
middle-income countries. In
the poorest countries of the
world, patients with advanced
AIDS or cancer have very low
probability of receiving PC,
including analgesics to relieve
the pain. High income
countries account for less
than 15% of the global
population but make up more
than 94% of the global
consumption of opioids. The
rest of the population (over 4
billion people) live in
countries where opioids are
unavailable or inaccessible
due to restrictive regulations,
poor procurement and
distribution systems, and
limited education. So all of us
working in the palliative care
field have a big task ahead of
us, and the International
Association for Hospice and
Palliative Care is working
together with other NGOs,
the academia, individuals, and
governments to help close
this gap and relieve the
suffering of millions around
the world.
About Liliana:
Liliana De Lima, MHA, is a
native of Colombia. Her
academic background is in
clinical psychology with a post
graduate degree in health care
administration and a
fellowship in pain and policy
studies. Since August 2000
she has been the Executive
Director of the International
Association for Hospice and
Palliative Care.
The Latino population is the
largest minority group in the
U.S. In a few years, the
number of elderly Latino
people who shall require end
of life care inside a hospice
will increase. However, the
use of hospice by the Latino
population is low because of
certain cultural and
educational causes such as: 1)
lack of knowledge of hospice
Quarterly Newsletter Summer 2015
16
care, 2) not wanting to talk
about death, and 3)
misconceptions about the
meaning of hospice care.
Some tips for approaching the
Latino population on hospice
and palliative care services are:
1. Increase the level of
knowledge about hospice and
palliative care in the Latino
community by strengthening
efforts to educate the
community.
2. Generally speaking, Latinos
hold cultural preferences for
indirect communication, and
they report preferring to not
receive detailed information
about the dying process.
Education of the Latino
community should take into
consideration these two key
elements of cultural
preference.
3. Given the central role of
the physician as authority
figure in the Latino culture,
there is a need for physician-
family communication about
hospice when referring Latino
patients to these services.
4. Navigation of the
intricacies of acculturation
may expose cultural
sensitivities that solely
knowledge of the language
may not resolve. It is
imperative to increase
awareness of the values of
involving bilingual, bicultural
community members who
better understand Latino
values of family relationships,
withholding information, and
secrecy.
5. Expertise in how to have a
conversation about death
considering four
characteristics:
a) Clarity in language,
communicate in a timely
manner.
b) Be sensitive in exposing
and conveying the diagnosis
and prognosis.
c) Transmit confidence to the
patient and family, accepting
their decisions.
d) Consider the moral and
psychological state of the
patient and his family.
Understand their situation,
Did you know?
Ten top hospice survey deficiencies as
noted by the CMS’ Survey and
Certification group for 2014:
418.56(b) – Plan of Care (L543)
418.56(c) – Content of the Plan of
Care (L545)
418.76(h) – Drug Profile (L530)
418.76(h) – Supervision of Hospice
Aides (L629)
418.54 – Update of the
Comprehensive Assessment (L533)
418.56(e)(2) – Coordination of
Services (L555)
418.56(c)(2) – Content of the Plan of
Care (L547)
418.56(d) – Review of the Plan of
Care (L552)
418.54(b) – Timeframe for
Completion of the Comprehensive
Assessment (L523)
418.58 – Quality Assessment &
Performance Improvement (L560)
Quarterly Newsletter Summer 2015
17
Your Work is Art
and be prudent in the
translation of concepts. For
example, hospice translates to
hospicio in Spanish, which
means “orphanage” or “place
for poor people,” and
therefore Latinos may be
predisposed to
misunderstanding the real
meaning of hospice care.
5. Considering that the Latin
culture has the value of family
unity, introduce hospice to
the patient and his family
using his home environment
to provide security and
confidence in elderly care.
About Sandra:
Sandra is a Psychologist with a Masters Degree in Psychotherapy and a Masters Degree in Superior Education. She is a Stanford Successful Aging Mini-Fellowship program graduate. For the last 14 years, she studied the elderly in the last stage of their life. She has developed thermometers that identify wellbeing and discomfort in their deepest roots: in emotional, social, and spiritual dimensions of
the person, to give treatment and improve quality of life. She is an opinion leader in Palliative Care and lives in México.
Featured Book:
Enduring Love, by Mary Landberg
It is my honor and privilege to
be a hospice nurse and
photographer. Over 350
hospice families have given
me permission to bring my
camera into a most sacred and
vulnerable time in their lives. I
offer free portraiture to the
dying and their loved ones,
and personally gift families
with matted prints and images
on CD. My mission is to
capture that unwavering
expression of love and
connection that endures
between people living with
terminal illness. I don’t usually
photograph faces. I simply
photograph hands holding
each other in tender embrace.
Remarkably, no two hand
portraits are exactly alike.
The hand portrait journey
started about four years ago
when I was silently holding
hands with Franklin, a ninety-
four year old WWII veteran
dying peacefully from
Alzheimer’s disease. He was
quietly finishing up the last
hour of his life in his barren
little room at a nursing home.
The old-fashioned rotary
Quarterly Newsletter Summer 2015
18
phone at his bedside rang. I
took one of my hands from
Franklin’s and quietly said
hello into the receiver. It was
his beloved grandson John.
When I told John I thought
his grandfather would most
likely die within the hour, he
sobbed, “Oh how I wish I
could hold his hand just one
more time, I miss him so
much.” I shared with John
that I was holding his
grandfather’s hand so I
offered the idea of snapping a
photo of our hands with my
phone and texting it to him.
He eagerly agreed. Within
seconds, the photo of our
hands arrived on John’s
phone, two thousand miles
away. I heard John burst into
joyous tears, “He looks so
peaceful and he isn’t alone.
That is all I could wish for.”
He said, “You’ve captured his
true essence, he was strong
and kind.”
The Birth of Hospice
Portraits
From that day forward, I
started carrying a camera in
my hospice bag along with my
stethoscope. I became
profoundly aware of the great
similarity in the dying process
regardless of economic status,
age, cause or place of death.
The loving way people touch
each other is universal.
If the moment feels
appropriate during a nursing
visit, I gently offer the idea of
a hand portrait. Nearly 100%
of families say yes without
hesitation. Most portraits are
spontaneous and commonly
taken in the last days of life.
All family members give
written consent. I also gladly
accept portrait requests from
the ICU and NICU at our
local hospital and from the
other three hospices in my
community.
A Simple Gesture with
Lifelong Impact
During the three minute
process of taking a few
photographs, I am
consistently humbled to
witness, and can actually feel
in my heart, the true essence
of loving connection between
people as they sweetly adore
their dying beloveds for the
portrait. Families sink into the
purity of their love for each
other for my camera to
capture.
Many people tell me their
photographs are their most
cherished objects and the
images enable their love for
each other to live beyond the
last breath. Taking the
portraits frequently moves me
to tears and has motivated me
to live and love deeper.
The response to the hand
portraits has been absolutely
priceless. In giving this gift, I
receive tremendous joy and
satisfaction that I am able to
capture a moment of genuine
love and preserve it forever. It
feels like a superpower! It is
my hope that other hospice
Quarterly Newsletter Summer 2015
19
Learn & Enjoy
workers across the country
follow suit.
Web: www.marylandberg.com
Facebook:
www.facebook.com/hospicep
ortraitsbymarylandberg
Next on your reading list:
1. Music Therapy in Palliative Care: New Voices, David Aldridge, ed.
2. Things I’ve Learned From Dying: A Book About Life, David R. Dow
3. Hospice Voices: Lessons for Living at the End of Life, Eric Lindner
4. Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat, David Dosa
5. The Helping Professional's Guide to End-of-Life Care: Practical Tools for Emotional, Social, and Spiritual Support for the Dying, E. Alessandra Strada
See you next quarter
(with your collaborations)!