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Quarterly Newsletter Summer 2015

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“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]


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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”


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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.


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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:

[email protected]

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?

http://www.cinemaguild.com/

mailto:[email protected]

http://www.prisonterminal.com/


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“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


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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


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“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


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


Care: Principles and Practice

[Wiley, late 2016], and is a

participant in the American

Animal Hospital Association

http://www.iaahpc.org/


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

[email protected].

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


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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.


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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


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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).

http://www.pccinstitute.com/


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


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


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

http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf





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

http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf



http://www.hospicecare.com/




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)


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


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


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)!

http://www.facebook.com/hospiceportraitsbymarylandberg

http://www.facebook.com/hospiceportraitsbymarylandberg

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