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Expressions Creative Works from the Members of HPNA

Volume 1, First Edition

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The Strength of One Nancy Zimmer, RN Admissions

He opened the door and we clasped hands

While I stepped into his life.

She was wrapped in pillows and afghans,

Crocheted long ago with steadier hands.

I see wrinkles of time and hands that held

This family together.

Her eyes say it all,

As we gaze at one another.

No strength in her limbs,

Yet strength is found if you ask.

You'll find she has one more task.

She stares at me, but gazes at him,

Don't blink or you'll miss

Her worried quest.

She smiles knowingly at me,

The most aware, of why I'm here.

While he rocks foot to foot,

Not knowing a safe place to stand.

She pats the bed, knowing he needs direction.

I step back to make room for heart and affection.

He knows not what to say,

She knows there are no sounds needed.

She raises her branched hand to his weathered face,

Feels the youth still in its place.

His head is bowed,

Her hand drifts down,

He catches its fall to his chest.

This was their dance,

I was blessed to see,

The strength of one,

given to thee.

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Circles Unbroken

Curled at his side, she dreams...

of when they first met and the symbolic promise of her ring.

Scratched and scuffed, it still shines.

The band has become loose.

Her hands withered, smaller with wrinkles and lines.

She dreams of her younger years,

when this gold circle was snug.

Life was busy then,

chasing dreams.

He called her his "love-bug."

His face is peaceful.

His hand rests on her hip.

A quiver of an unconscious smile crosses his lips.

Her forehead rests against his as her heart says "good-bye."

The room is filled with angels that have come from on high.

God the Father,

Our life giver,

Now beckons him to cross the crystal river.

He follows with steps as strong as when he was young and pauses,

just beyond the Son...

"Thank you Lord for your grace and love

and for blessing me with my "love-bug".

Thank you Lord for loose rings

that were once tight

and for a love that fit me just right.

Take me home while she's sleeping.

Stop her from waking, let her keep dreaming.

I know she will be fine without me here beside her.

YOU will be her keeper, guardian and provider.

Let her memories bring comfort to her heart and send gentle breezes to remind her

that we are only a breath apart.

Susan McCurry LPN CHLPN

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7-5-14

I did not know you when life was vibrant, but meet you now in the time

of conclusion. You share your stories of who you were; the hopes, the

dreams, the adventures. You share your loves and your

disappointments; you laugh, you cry and wait for your future. Today

you are in the present attempting at composure, trying your hardest to

grasp the quality and peace you so desire; successful at times and not at

others.

I see your pain, I see your suffering. I cannot grasp the depths of your

journey.

Your family, they sit vigil, longing for the days of old and struggling to

accept the reality of time slipping by.

The memories of love and pain, struggles, joys intermixed into grief;

confusion, anger, sadness, heartache.

Regrets come forth; dreams dashed weigh heavily on your mind. The

worries of not knowing how your family will cope; the fear of their

struggles yet to come without your guidance or support, the happy

moments in your children’s lives; the marriages, graduations, births you

will not share, and yet the deepest memories good or bad will remain

with those left behind to share, to reminisce, to hold dear.

Through the memories one can grow, learn to love and let go. The cycle

begins again.

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7-6-14

Past, present, future all intertwined. The past is gone, the present is

now, and the future beckons. The decisions, the choices, cannot be

changed and yet we wallow in times gone past. We punish, we fret, we

blame, we cry; yet we are here in the now, the present, a gift. Shed what

cannot be changed and gather the pieces of your journey, knowing this

is a realization of who you are and what was meant to be. Accept the

now, do not wallow in despair, and do not answer the what ifs. Life is a

journey that molds over time giving direction in living for now. Use

your past journeys to help and guide others. The past is gone; stay in the

moment, learn the lessons and be aware that the future beckons with

hope.

Windy Richards, RN BSN CHPN

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COMFORT MASTERS

Like warriors to whom much is given we are

duty bound to a greater measure of care.

Always vigilant, we summon courage to

intercede when lesser men fail.

Like silk threads forever weaving, we

repair the rent in the fabric of comfort

When we release our charges to eternity,

as the mission is ended,

we do not linger on our omissions, but

rise instead to a higher perfection.

RAH2.28

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A Patient’s Gift

I wish you could see what I see when my eyes are closed.

I see your smile, I see your eyes looking down on me.

I see your teardrops as you cry.

Looking down on me as you do, wondering what you should do. You

are not in control, this you must know.

You do not agree, but soon you will see.

Soon I'll be gone and I will be the one smiling looking down on you.

You cared for me, for so long you held my hands, you stayed strong.

You cared for me, for so long your hands kept me strong.

When my time is up and I have to go, I want you to know that I do

know what you have done and have been doing for me.

I want you to know, I love you always.

I love you today and all your tomorrows.

I want you to know, if you let me, I will forever be in your heart never

to part.

Your courage and strength allowed me to be with you.

You gave me the gift, now let me give it to you.

I give you the only gifts I have left to part.

I give you my memories.

I give you my heart.

By: Cheryl Gancio

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The Person in the Picture

by

Colette Greer Daniel

As I gaze into your face,

I see you in another place.

Unresponsive, vacant eyes,

You’re the person in the picture in disguise.

The smile, the pose are a visual delight.

These are not the cues I see tonight.

The person in the picture looks loving and giving,

Now only a warm body exists for the living.

How grievous and sad that it comes down to this.

To be not a death, but a surviving “near miss”.

The person in the picture had life and had voice.

A surrogate now is the one with the choice.

.

Experiencing life was all that was needed.

Preparation for death had never been heeded.

The person in the picture was steadfast and true.

An intangible spirit that we cannot pursue.

Patiently watching the final premier,

Expectantly waiting for death to appear.

The person in the picture is beauty sublime.

A minute of life has been frozen in time.

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Even Now

By- Patricia DeGaetani, MEd, BSN, RN

Still haunted by your aloneness

Wondering why out of hundreds

Yours is the case that lingers

Maybe it was what I expected--

Fierce independence and resistance,

Hostility and rejection of the care from a stranger

Distrust for anything and everything hospice

But in your apparent decline,

You welcomed me into your space

Then I saw,

I knew--

This was going to be different

Countless times, at the end of the day,

I've left so many patients

In the care of others

But not this time--

This was not your way...

Slowly, eventually, I came to understand

It is the dying process

For one so stoic and alone

That I cannot accept

Yet must somehow

Learn to respect and why,

Even now, yours is the case that lingers

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The Gift

By- Patricia DeGaetani, MEd, BSN, RN

They ask, "How can you work in hospice?"

I say, "How can you not?"

Facing inevitable death, impending death,

We care for those at the final stage of life

Too often blinded to or ignorant of

The path we will all someday walk

If nothing else

But a not-so-subtle reminder

To cherish the moments we do still have

And live each day to the fullest

How can you work in hospice?

For the gift

Of compassionate living it bestows.

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The Quilt of Caring

By

Donna Taranto

Palliative Care is a treasured quilt

Encircling body, mind & soul

It blankets the patient completely

To achieve patient & family goals

Doctors appliqué their expertise

When serious illness starts

Social workers piece solutions

To questions with many parts

Pain & Symptom Management

Border a patients’ stay

Add Pharmacy’s touch inside each stitch

For relief that doesn’t fray

The Nutritionist feeds the patient

Like the sewing machine needs its thread

Community Quilters and Spa 85

Are some ways the needle is fed

Pastoral Care’s faithful backing

Warms the body and the soul

Nursing provides the strongest thread

Piecing care in ways untold

Physical Therapists offer movement

Like fabrics to give it drape

Hospice & Nursing Home specialists

Added within to give it shape

Homecare embellishes the quilt top

‘Cause there’s no place quite like home

Care Management creates a template

So no patient will suffer alone

A quilt of caring & humanity

Using specialists of many forms

It encircles each patient it touches

Providing holistic healing that warms.

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Palliative Care By Donna Taranto

A piece of yourselves

You give to each

There’s no one too sick

Or out of your reach

You give up your heart

Sometimes your soul

It’s never enough

When healings’ your goal

If healing the patient

Cannot be done

You prepare a soul

For its flight to the sun

With caring hands

And a sincere smile

You take pain away

With dignity and style

A parting haircut

One last favorite drink

Or a last look at nature

You don’t even blink

You gather their family

For one last kiss

A final sweet memory

One last wish

When the butterfly takes off

And flies to the sky

The family is cared for

To help say goodbye

Palliative Care Services

Like the sweetest dove

With comfort and caring

It surrounds all with love.

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A Heart With Warm Hugs

When I grow up, that is ultimately what I want to be,

A Heart with warm hugs.

As a youth I wanted to wipe out all suffering in the world.

To bring joy and laughter to each man, woman, boy and girl.

I went to college and got my nursing degree;

cause I desire to be,

a heart with warm hugs.

A heart with warm hugs expresses compassion, oneness, no barrier.

It brings a moment of peace, warmth, healing, smiles, positive energy, oh sweet love.

A heart with warm hugs, reinforces and strengthens the chain of unity,

peace, understanding, good energy around the world.

That is why I entered nursing;

to touch, to heal, pour the energy of love into each hurting body, heart and mind.

I admired the way people of different cultures, race and religions appreciated the compassion, respect and touch

of love that my mother shared with all her patients.

Then the ultimate place that others thought I am crazy to want to be,

Is in hospice which found me.

Where my heart with warm hugs extends to those in most need of the energy of love, moments of feeling at

peace, oneness with all life energy.

To further be able to extend my heart with warm hugs to their family and friends.

To let them feel this is from no pretense.

The spectacular thing is how good it also makes me feel,

And guess what,

It's FREE!

Andrea Smith-Blackwood RN, BSN

Hospice of New York

516 444 6023

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Angel

The 40 year old hospice patient, Mr. M, sits in a reclining wheelchair listening to the TV.

Alone in his nursing home room he can only hold his head up for a short period of time to see the

picture on the screen, the rest of his body is paralyzed, except for a slight movement of his arms.

Unable to speak, he lives inside his brain with thoughts to be heard by only God or himself. His

mind is fully lucid. He communicates with other people by moving his head for “yes” and “no”

answers. There is never a smile on his face or laughter in his expression. He has been in hospice for

several months. He stares for hours at the ceiling and the floor in his room listening to the TV, or

the people talking in the hall. This is his life.

The hospice aide, Christine, arrives to feed him lunch. The highlight of his day comes from

the pleasure of tasting food, the gratification of filling an empty stomach. She not only feeds him, she

brings a connection to another person as she talks to him with kindness. Each spoonful of blended

pureed food she carefully places in his mouth. With difficulty swallowing, he moves his chin to his

chest and then his head sways backwards; this to insure the food goes down the right opening. He

does this repeatedly with each bite. Too many times the food has gone into his lungs; his ability to

swallow is dying like the rest of his body. He has made the decision to let himself die when it goes

into his lungs the next time, and not to return to the hospital or receive antibiotics for the treatment

of aspiration pneumonia. His longevity is at risk with each spoonful of nourishment, so she takes the

time to feed him slowly.

Christine tells him stories while she feeds him, stories of the Redskin football team, the

programs on TV, and any of his favorite topics. It takes a special person to carry on a conversation

with someone who cannot speak back. She comes to him with so much compassion in her heart.

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When the feeding is done she asks him, “Would you like to go outside Mr. M?”

His head slowly moves up and down to answer “Yes.”

Christine’s only responsibility is to feed him. She has many other people to care for on this

day, but she chooses giving him joy as her number one priority, since his days in this world are

limited. She wheels him outside, sacrificing her own break time. She is expressing the giving of love,

like a mother would do for a son, and adding this human component to her hospice work.

She pushes his wheelchair to the elevator and out the front door. He inhales the freshness of

nature. It is exhilarating compared to the enclosed air of the nursing home, with its occasional odor

of feces and urine. His eyes fill with delight at the sight of the green grass, the squirrels running

about, the summer leaves on the trees, and the warmth of the sun on his face. Christine is like an

angel sent to him, as she continues to talk about the sound of the cicadas and other things in nature.

This simple 20 minute walk, which a healthy person would take for granted, is like a child going to a

playground for this paralyzed man who reclines in his wheelchair or lies in his bed 24 hours a day.

They return to his room with the TV playing an episode of the comedy “Home

Improvement”. An extremely funny scene occurs that makes Christine laugh out loud. Her robust

laughter penetrates Mr. M so strongly, and to her surprise, a gesture of laughter comes from his

deteriorating throat. For the first time in the eight months she has been caring for him, she watches

him express happiness. Tears form in her eye, for Christine feels, she has just received the best

reward in her entire career as a hospice home health aide.

Written by SUSAN RANDALL, RN (as told to her by a hospice home health aide)

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Then and Now ( a confession )

Ingrid Y. Cresencio

My father is my inspiration in pursuing this career. His passing has been painful for me who

witnessed all his sufferings.

Wished I knew about Palliative Care and Hospice then-- but even so, our Philippine Care System

does not practice this delivery of care, though the value of patient dying in dignity and comfort has

always been our priority, yet, a struggle for lack of knowledge and possibly resources.

He passed without any ACP, we are left in the turmoil of going through the battle to keep him

with usor to let go for he is in great discomfort...it was hard.

Finally when my mother decided for a DNR decision, I was hesitant.

I thought I've failed him, me being a new graduate nurse by then.

He passed with all his loved ones on his side, but i couldn't forget the last hour; he died grimacing

in agony.

Hospice opened my eyes to the great reality beyond what i could pathom. My feeling of guilt gone

but only frustration that i could not afford him comfort from pain then. Thus, I wish to share this

expertise someday to other devoted families like my own, to the many sincere and loving

caregivers like myself---- That dying should never be a painful process, yet, a beginning of new life

without suffering.

I wish to pass on the gifts---to reminisce, to gratify, to let go...

for everyone to make most of their time feeling these words...

"Thank you" "I'm sorry" "Goodbye"

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Nourished Spirit

After a long holiday weekend combined with me being out sick for a few days, it was time

to return to the home of my terminally ill patient, Mr. Joey. It had been seven days since I last

visited. This pillar of his family was sad a week ago, showing me a side his family didn’t see. He

felt safe enough to cry in my presence when we sat alone on his sofa that day. The closeness

between us grew so strongly, like an invisible film of superglue bonding our souls. I felt honored

to receive his trust. The report from the other nurses who visited in my absence was that his

illness was progressing rapidly; daily nursing visits were needed.

The maid lets me in through the front door. Mrs. Joey stands at the top of a plush

stairway; she speaks to me over the railing, “Are you okay, Sue?” She is concerned about my

health since I was out for a few days, but I don’t like our clients worrying about me. “Yes, I’m

fine. Is Mr. Joey up there?”

I walk up the soft carpeted stairs to stand beside her. She tells me her husband hasn’t even

gotten out of bed yet, hasn’t eaten anything, and hasn’t taken his pills; it is already mid-afternoon.

Her fingers are pressed hard to her cheeks, eyes look up to the ceiling; the worry hangs in the air

like a dark cloud filling the room.

We walk together into their bedroom to the sound of loud gurgling. Mr. Joey’s mouth is

open wide, his skin pale with brief periods of no breathing. He is lying in a queen sized bed and

there is no bedside commode. I think, good grief, why didn’t the other nurses order the proper

equipment for here? I wonder how he will walk to the bathroom. He looks close to dying, drops

of perspiration rest on his forehead. A hospital bed, at least, would make him more comfortable,

he could elevate the head of the bed for all that gurgling.

When I touch his arm, eyes open gradually, he is running a fever. He asks for help to

walk to the bathroom. I hand him the walker when he stands, toothpick legs wobble with each

step. I wrap my hands around his bony arms to support him; he is so light from all the weight

loss.

Luckily he makes it back to the bed and sits on the edge in a white tee shirt and crinkly

pajama bottoms. I kneel in front of him for our serious conversation about bringing in a hospital

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bed, preparing for this next stage. Mrs. Joey sits on the bed beside him with her arm over his

shoulder. I tell them both that the time has come; he will be bedridden soon. Mr. Joey looks

down at his swollen feet resting on the floor. There is a very long silence. Mrs. Joey hands him a

tissue to wipe his tears and to blow his nose. His lips quiver in the way of a person in distress,

trying to say words that are coming from deep in his heart. When he speaks, it is faint and slow,

“I know it is time, Sue, but I was waiting for you to come back.” There is another long period of

silence before he continues. “You have a calming quality and now I’m ready for the bed.”

There is a stirring inside me too great to put into words, a sensation that makes me cry too.

This connection between us is the sorrow, as well as the joy, of working in hospice. Human

chemistry cannot be bottled into a hospice training class; it is unexpected, free flowing. I could

feel his pain, but I could also feel his precious love.

This is how it is with some patients. The monetary compensation for my job is important

to function in this world; it feeds the body. But patients like Mr. Joey feed something much more

important, he nourished my spirit.

- Susan Randall, RN

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Love Letters

As members of a hospice team, we have daily opportunities to participate in the love stories of

our patients. Sometimes we step into a patient’s existing love story. The patient and family share

their life history, framing their present with their past. We walk the intimate path with the patient

and family toward their future and final destination.

Other times we have patients who do not have family members present or able to share, create or

maintain a love story. It is for these patients that our actions and interactions become the love

story. The love letters we write are in our clinical notes. Notes filled with documentation

including: “Smiles at this writer, and nods head ‘yes’ when asked if he remembers me.... Able to

squeeze writer’s hand and shaking. Given PRN Lorazepam...for signs and symptoms of anxiety.

Soft music also initiated to help with anxiety.” And further, “per protocol routine

checks/cares/repositioned completed the NOC shift, gentle body massage with lotion, peri/cath

cares completed, applied skin barrier...assisted RN with dressing change, pt has been shaved, nail

cares completed, face/hands/ears washed, oral cares completed, lip balm applied, bedding and

gown changed....” With each and every action we have the opportunity to create the love story

every patient deserves at the end of life. Each of our clinical notes is a love letter reflecting our

love story with the patient.

The final letter might read, “Social worker received a request for volunteer vigil for patient from

RN. Worker contacted vigil volunteers and coordinated vigil for this day from 12:30PM –

11:30PM.” Concluding with, “Pt died peacefully with vigil volunteer bedside.” The next time

you read a colleague’s note stop for a minute and admire the love letter they have written.

Katie Osburn, LMSW

Good Samaritan Home Health and Hospice

Prescott, AZ

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My friend; My love.

I lost my friend last night;

He left while I watched him sleep.

I loved him and I told him so;

He loved me and I let him go.

I lost my friend last night;

He left while I watched him sleep.

Kathleen K Curran, CRNP

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Connections

For the time we have…minutes, hours or days,

Let’s hold onto the feelings and memories and hope.

The time that we have is for sharing, not wasting.

For the time that we have, let’s love, laugh and cry,

A touch, a sigh, a smile filled with the joy of connections.

The time we have is for me, and you, and ours.

For the time we have is threaded from past to present to future,

Not isolated in pain or grief or the fear of a moment,

But a series of connections from you, to me, to them, to God.

All the time we are given comes out of the time others had,

And will become the beginning of time for someone else.

The time that we have is for celebrating connections.

For the time we have ….minutes, hours or days,

Let’s hold onto the feelings, memories and hope.

The time we have is for sharing, not wasting.

Pat Poticny BSN, RN

Wife, mother, daughter, grandmother, granddaughter, sister

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An Essay

Playing Charon

Author: Katherine Mead, RN

Even though it was a Friday night, I still picked up the shift. The scheduling coordinator from the home

health company I worked at had already called me twice about this new client who desperately needed a caregiver.

As a nursing student, I needed the money more than I needed a free Friday night, so I agreed to take the shift.

When I pulled up to the client's home, I couldn't find a place to park. There was a buzz of activity. A van

blocked the path to the entrance while an older woman carried cardboard boxes into the house. Inside, a young

man and an employee from my company flitted around the dingy home. After I made my presence known, my

fellow employee, Ashley, made introductions. "This is Tom, Mr. E's grandson from out of town. And this is

Sherri, the hospice nurse." Hospice? The scheduling coordinator didn't say anything about this client being on

hospice when I took the case.

Being a relatively new nursing student and home health aide, I didn't have any experience with hospice. I

started to worry. Ashley led me to the bedroom to meet the client, Mr. E. And there laid my first hospice patient.

I was shocked by what I saw. He was emaciated, just skin and bones. His eyes were closed, his face stubbly and

clenched in pain, and an uncleanly odor lingered in the air. While I was verbally assenting I would be able to care

for the man, I'm sure my face betrayed my lack of confidence.

We stepped back into the living room. The hospice nurse gave us some final instructions before leaving.

The grandson went back to the kitchen to finish some paperwork. Ashley gave me the background of Mr. E. His

wife had died in the last year and after that he became a recluse. His family hadn't heard anything from him for a

while, so they sent someone to check on him. They found Mr. E without a crumb to eat in the house, badly

soiled, and unable to speak. The grandson came immediately and set up hospice and home health. Ashley had

been here for hours, caring for Mr. E and tidying up the house. Now she had to leave and it was my turn to care

for the dying man.

The first hour or two I continued the cleaning that Ashley had started. I checked on Mr. E frequently, but

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could hardly bear to stay in the room for more than a few minutes. I also spent my time visiting with his grandson,

who really needed encouragement at this difficult time. After a while, the grandson declared he was going out to

relax after the stressful day. I agreed it would be good for him, but inside I was terrified. What if this man died

while I was here alone? After he left, the place became eerie. Mr. E's oxygen concentrator hummed in the

background, an oversized clock ticked in the distance, and creepy shadows danced along the walls. Even though I

had some free time to study, I couldn't concentrate. I kept peeking into the bedroom to make sure he was still

alive. I watched his breathing. There were long periods when his chest would not rise, and then he would take a

gasping gulp of air. I sighed in relief. This went on for a long time. I brought in a chair and sat next to him. I took

his cool hand in mine, squeezed, and then held on firmly, letting him know I was there.

As much as I wanted to believe it, this man didn't need his laundry washed, he didn't need a vacuumed

floor. He needed someone to be with him, to watch over him so he didn't have to be alone with the demons I'm

sure he experienced before his family found him. We often feel the need to keep busy when facing an event such

as this. Cooking and cleaning seem of utmost importance. We think these are the things that need to be done,

these will bring comfort both to ourselves and to others. But the only thing I needed to do that night was to sit

with that man. He was facing the final journey of his life, and he needed a traveling companion.

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MY FAVORITE MARTIAN

Author: D Handy RN

NANO,NANO AS MARTIAN’S USED TO SAY.

GREETINGS TO ALL WHO CAME TO VISIT, AND WELCOME THEM GARY DID. HE AND

JACKIE WOULD ALWAYS MAKE THEIR COMPANY FEEL RIGHT AT HOME. WHAT A WARM

AND INVITING HOME IT WAS TOO.

WHAT CAN I SAY ABOUT THIS MAN EXCEPT HE WAS AWESOME! THIS IS A MAN WITH A

TERMANIL ILLNESS WHO LIVED EVERDAY ‘FOCUSED’ JUST ON THAT DAY. TOMORROW

WAS ANOTHER CHAPTER.

HE WAS MATICULOUS ABOUT HIS CARE AS WELL. DO YOU KNOW HE MADE A COMPUTER

PRINT OUT OF EXACTLY WHAT HE TOOK AND WHAT TIME IT WAS TO BE TAKEN. AND

WHEN HIS MEMORY WASN’T AS GOOD… HE BOUGHT A DIGITAL PILL ORGANIZER THAT

VERBALLY PROMPTED HIM TO TAKE HIS PILLS ON TIME.

HE WAS THE PERFECT CLIENT FOR JACHO EXCEPT FOR THAT NASTY CIGERRTTE HABIT.

BUT EVEN THAT HE MANAGED TO COMPLY WITH AFTER CONTINUED EDUCATION.

I LEARNED A LOT ABOUT “THE MOMENT” FROM GARY.. …LIKE THE BREATH TAKING SEEN

OF WATCHING AT LEAST 30 HUMMINGBIRDS AT ONE TIME FIGHTING FOR THE SYRUP

THAT GUY DILEGENTLY MADE EVERY WEEK TO PUT INTO THE 4 FEEDERS HANGING

OUTSIDE HIS WINDOW. WHAT A MAGNIFICENT SITE TO SEE HUMMINGBIRDS BACKED UP

IN LINE WAITING FOR THAT OPEN SPOT!

SO, WHY DID GUY THINK OF HIMSELF AS A MARTIAN?? BECAUSE HE HAD DEFIED THE

ODDS OF A CHILDHOOD ILLNESS AND THEN AGAIN IN ADULT HOOD WHEN HE HAD HIS

RIGHT CANCEROUS LUNG REMOVED AND THEN CAUGHT PNEUMONIA. NO ONE THOUGHT

HE WOULD SURVIVE…BUT HIM! AND HE DID AND THE FUNNY THING WAS HIS

PULMONOLOGIST SURVIVED ILLNESS AS WELL. THEY CALLED THEMSELVES MARTIANS

AND EACH TIME THEY MET THEY WOULD SAY “NANO….NANO” “MORK AND MINDY STYLE

IF YOU CAN REMEMEBER THAT FAR BACK.

SO, BE IT FITTING THAT THIS GENEROUS, CARING, LOVING, AND METICULOUS GARY IS MY

FAVORITE MARTIN.

REST IN PEACE GARY………………

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The Love Tree

Author: D Handy RN

Sherry always talked about her garden,

Her little “Oasis” she called it…

Well, one day on one of my nursing visits when she

Was resting quietly, almost non-responsive

I stepped outside to view her backyard

There I saw beauty as only seen through her eyes.

A quiet sitting area stirred my attention

Until I saw the Grapefruit Tree

With it’s beautiful melons ripe for the taking

I asked Kenny if I could have one

He said absolutely, take as many as you like…

He then commenced to tell me a story about that particular tree…

He said, that he bought that Golden Beauty Grapefruit for his wife, Sherry

When they got married

And that this tree was her welcome gift to his home, her new home

Well, needless to say I felt the love immediately in that tree

With it’s beautiful fruit.

So, a few weeks later after what seemed to be a never

Ending dying process,

(that Sherry she was a fighter, alright)

I asked myself what else has not been done to help her

Through this End of Life Process: who hasn’t said Goodbye or I’ll be ok without you?

And then… I remembered the Grapefruit in my refrigerator!!

That night I sliced and diced that grapefruit and had my two sons’ join me in toasting to Sherry

and Kenny, and the Grapefruit Tree of Love.

She died peacefully 4 hours later.

It was The Tree of Love she wanted me to experience.

And I did whole heartedly…………………..

Rest in Peace Sherry

Page | 26

THE GLASS IS HALF FULL

Author D Handy RN

When I was in the early part of my marriage my husband used to get frustrated with me, because of my

pessimism. He would say instead of looking at the glass as half empty, make an effort to look at the glass

as half full.

One day, on one of my 1st

nursing visits to meet my new patient I realized she would not be with us too

very long and called her son to notify him. He was saddened by this fact and he told me

the last time he saw his mother she was angry that he did not bring her a candy bar and soda. He asked

me if it would be alright if he brought her one now. I said of course it would be fine.

He then began to tell me of his hardships this past year or so, which he and his wife had their own

mortgage and escrow company that with the market turndown they have now lost. He also explained that

he was in the process of losing their home as well. Charles told me that when things were going well, he

brought his mother out from Tennessee to live with him. He said as things started to get worse for him so

did his mother’s health. He said she used to blame herself for his misfortunes. As the sadness came over

his voice I asked him, “ Charles I bet you had some good times with your mom back then, huh?”

His voice sparked up and he said “oh yes, one thing my mother always used to talk about was the time I

took her for a ride on the back of my Harley. We went from Chino Hills to Carlsbad and then all the

way up the coastline to Malibu. She just loved the ride, one of the high points in her life she said.” I told

him what a beautiful memory that was and how it brought goose bumps to my arms it was so touching.

So, the next day on my visit to see his dying mother, I noticed how close she was to death. I also noticed

that there was no candy bar or soda at her bedside. So, I sat down at her side and began to tell her how I

had spoken with Charles and that he was on his way with a candy bar and soda for her. I could here

acknowledgement in her moan. And then I began to reenact the story Charles told of the Harley ride up

the coast. She further acknowledged my words. And it seemed as though calmness came over her.

She passed away peacefully half and hour later.

In speaking with her son later in the day, he told me how he was on the way there with that candy bar and

soda, he was just too late. So, I made sure I told him that I sat at his mother’s bedside and told her that

Charles was on his way with a candy bar and soda, and how I reenacted the Harley ride up the coast.

I could hear his voice choke up as he thanked me.

As I got off the phone, sadness came over me and then I thought what my husband would be telling me

right now. He would say “Dawn don’t think about the sadness of the situation, think about how richer

your life is because of it.”

“Life is a journey-don’t forget to enjoy the ride”- In memory of Douglas Handy -Nov. 17th

1959-Feb 25th

2003

D Handy RN- Nov. 17th

2009

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Beep

Author: Juli Caron, CSJ

Beep! Beep! Beep! “Oh yes that is the pager and I am on call.”

But it is 3:00 a.m.! I need to put my awake voice on.

“Someone has died? They need/want a Chaplain?”

“I will be right there,” I hear myself say.

There in the room is a very peaceful appearing woman.

Her daughter is at her side. Holding her hand.

“Will you pray?” she asks.

“Of course,” I respond. And we pray, calling on Jesus,

And ending with the prayer Jesus has taught us to pray.

“Our Father, who art in heaven, hallowed be your name,

Thy Kingdom come, Thy will be done, etc.” We all say it,

Thy will be done, but in this case do we mean it?”

Another page, another death. Mary North?

I think to myself, “her husband will be devastated.”

I go to the floor and off the elevator comes Joe,

Mary’s husband, he falls into my arms and sobs.

Hand in hand we walk to Mary’s room.

Joe, throws himself onto Mary’s chest and sobs

And sobs. Tears run down my face.

Beep! Beep! Beep! Another page.

Another death. I hear sobs echoing in the room

As we pray. We pray the Lord’s prayer;

“Thy will be done, etc.

I then go to my office to search my heart,

To “have a little talk with Jesus”,

Thank you Jesus for calling me to this ministry.

My heart is full and broken, scarred and marred,

Weeping and sad, yet full and joyful to over flowing.

I meditate on the Gospel of Mary while carrying Jesus

In her womb, and going to Elizabeth and;

As they greeted one another,

Elizabeth felt the babe in her womb leap for joy.

The tender intimate moment of that greeting;

Same is the intimate tender moment of being invited

Into the life of someone and his/her family

As one enters Eternal Life.

No money, no words, nothing can compare with this

Privilege. This is why I get up at 3:00 a.m. and

Put on my awake voice and say “I will be right there.”

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I cared for a patient who was dying today

Author: Juli Caron, CSJ

I cared for a patient who was dying today.

My first time

Scary at first. I wondered; how will this go?

What will it be like? Will it be quiet, or will there

Be a noise?

It is so quiet in this room,

All I can hear is Hilda’s breathing.

Hilda is her name.

Her breathing is shallow

Her chest is barely moving.

Her skin is warm to the touch.

Hilda is alone in the room,

I wonder where her family is.

Does she have family?

Not so sure I want to be in here alone.

O.K. I can do this.

Never cared for anyone who has died.

I can do this.

I pull up a chair,

Take her hand,

I listen to her breathing,

Her breaths begin to get less and less,

Is this what it is like? I ask myself.

Not so scary,

With one more breath, her breaths have stopped.

Hilda has died.

Wonder what it is like to die.

So peaceful and quiet.

My privilege to be here.

Did Hilda see Jesus?

What is she seeing now?

A gift has been given to me.

Thank you Hilda.

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Quality of Life????????

Author: Juli Caron, CSJ

Heart wrenching

What are we to do?

What would she want?

17 year old; cardiac arrest.

Severe Brain damage

Heart wrenching

What is best for her,

What would she want?

Does anyone know?

What is right?

Is there a right?

Is there a wrong?

Breathing on a machine

On Propophol

Is this a way to live?

Is this quality of life?

Braces on hands and feet,

Tube in her throat

Connected to a ventilator

Tube in her bladder,

Beeping going on here and there

God help us know what to do,

Heart wrenching

Or is it nothing to do,

But to wait

Give us the grace to be faithful

To your call within us

To bring life into this

Labor of love.

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There is great commotion all around

Author: Juli Caron, CSJ

There is great commotion all around.

Beepers are going off,

Respirator alarms are buzzing,

Nurses and other staff are moving as fast as they can.

Me?

I have a patient who is going to die

In the midst of all of this chaos.

Bright lights all around.

Not very peaceful

Families are walking in and out

Doors are slamming shut

Noisy and not very peaceful

I have a patient who is going to die.

How can I do this?

I hear sobbing coming from the room

I don’t know what to do

How can I do this?

O.K. I can do this

I cannot fix it,

Wish I could

Respirator is going to come off?

YIKES, what/how do I do that?

O.K. I can do this

I cannot fix it,

Wish I could

Respirator is removed

Family is all around

I encourage them to hold his hand

I am present too.

George stops breathing

Peacefully and quiet

In the midst of the chaos

A sacred event has taken place

Thank you for this gift.

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To: Hospice Caregiver X

Author: Lara Slavtcheff

This isn’t me, you know

I’m sick

and I tell you

this isn’t me, I’m not myself

I may have lived a long life

or not so long

I’m a Grandmother

a Grandfather

a Mother, a Father

a Daughter, a Son

a Sister, a Brother

a friend, a lover

a wife, a husband

an Aunt, an Uncle, a cousin

a Sister-n-law, a Brother-n-law

I am someone, I am loved

This isn’t how I used to be

I want to tell you

because you won’t know

you who care for me now

So, I ask you

to look me in the eye

and address me by name, hold my hand

show me the respect

I haven’t had time to earn

from you

I’m a person with a PhD who speaks 7 languages

but I am mute now

or mumbling incoherently

I’m the gentlest soul

but you wouldn’t know

by the way I curse, punch,

and scream

My body’s decline

has taken over my mind

you see

and I am helpless,

at your mercy

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I don’t hear well or at all,

I can’t eat well or at all,

I can’t see well or at all,

I can’t walk or get out of bed

or I can only lay still

The time has come

where the flower of me

is withering and soon to die

and you have never known me

in full bloom,

but I was oh so beautiful!

So, when you look at me

I wish you to see yourself

be gentle, be kind

do unto me as you

would want done unto you

and know that

I will forgive

your momentary human frailty

this is all I ask

I hope only that you too

will want compassion, gentleness,

love and respect

when you lay withering and dying

among strangers,

for make no mistake

someday you may be me

looking at you

from a bed just like mine

Please, honor me now

in my time of dying

like you would be joyous for me

if you were at my birth

Are birth and death not both equally

momentous and profoundly awesome?

If you do this

I will send you a thousand thank you(s)

from beyond the grave

and a thousand blessings

that your death might be like mine:

without pain and distress,

dying with honor, dignity, love and respect.

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Stand By Me

Driving to my dying patient first thing this morning I’m anxious to see if his night was

peaceful. The rattle had begun the day before, gurgling secretions rumbled in his throat.

Another nurse visited for me yesterday. Even though I wanted to be the one to go, there are

times when I can’t get to everyone. Seeing patients every week creates a bond, but I knew the

other nurse would do everything right.

This morning I arrive to find him in poor condition. He is struggling to breathe with fluid

in his throat. His head moves from side to side, arms thrash wildly, eyes squint, and a piercing

moan is the only sound he makes; it is an awful sight. Fear builds inside me, my eyes open wide.

I don’t know what to fix first. It’s one of those moments when I have to reach back into my mind

to rely on training and my years of experience. I run out to my car, dig frantically for a catheter,

and run back in. After giving medicines for pain, for restlessness, for secretions, I insert the

catheter tube. The pain from a full bladder is eliminated. One step at a time I tell myself; stay

calm.

His daughter Jan rushes through the front door. She takes a look at him lying in the

hospital bed and asks what she can do. She paces from room to room, pleading for help. “I

don’t care what it takes,” she says, “I just want my dad to be out of pain.”

It is time to wait for the medications to do their work; I’ve given the maximum amount

ordered. I get on the phone with my manager and say, “There is an acute crisis here. Can this

patient go to our inpatient facility?”

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I call our nurse practitioner, Debbie. Hearing her voice is like being a little child lost in the

woods and suddenly hearing my mother’s voice. I absorb Debbie’s much needed support. Her

calmness radiates into me, through me, and makes it all the way to the patient’s daughter when I

get off the phone. I stand beside Jan looking at her father and say calmly, “Okay, he will be

comfortable soon; this is the plan.” I follow Debbie’s instructions to give more medications, and

wait for an hour; later he will be transferred to our facility.

The patient’s wife, Gloria, and Jan are waiting for the medications to work when Allyson

arrives. The timing of this hospice social worker is perfect, waiting is hard. Allyson comes into

the room with open arms, gives Gloria a hug; one of those long squeezes that shows genuine

love. Gloria closes her eyes during the embrace. When she opens them tears line the inside of

her eyes; Allyson has reached the sadness, some tension is relieved.

Jan’s phone rings. Our hospice Chaplain, Mi Sook, is on the other end offering help.

There is a warm feeling inside me, pride in our hospice team, a sharp awareness of compassion

that comes from the human heart. We are all working together well, relieving more than the

patient’s pain. I really love this job.

When the patient is comfortable and Jan understands what to do next, I leave the home.

Allyson stays to continue emotional support. I turn up the volume on my car radio and the song

“Stand By Me” is playing. I sing the words out loud, “If the mountains should crumble to the sea,

I won’t be afraid, as long as you stand by me.” Little goose bumps appear on my arms. It is like

some fabulous epiphany has just come to me. Isn’t this what hospice is all about? Debbie stood

Page | 35

by me, I stood by Jan, Allyson stood by Gloria, Mi Sook stood by Jan, and on and on. It is

beautiful!

I pull into the driveway of my next patient when my cell phone rings. It is Allyson telling

me the patient just died. I return to the home for the death visit. Jan is thankful her dad is no

longer suffering. When the funeral home director is on his way to pick up the patient, Allyson

and I leave the house. Walking to our cars she exhales loudly and says to me, “That was too

intense.” While Allyson tells me the story of the patient’s last breath, I sing the song in my head,

and with little bumps on my arms, I faithfully stand by her.

- Susan Randall, RN

Page | 36

On Her Final Day

This woman was 51 years old, and admitted to the hospital about a month before she died. I

didn't meet her initially, the consult done by one of the other members of our team. I think we

all had a hand in helping her with her goals of care, and options for treatment.

Years of drug use left her scarred and cynical, and with a hefty methadone prescription that she

received usually at the Tacoma methadone clinic. Her methadone was stopped when she could

no longer travel to the clinic, a requirement for a methadone maintenance program. We all tried

to help her cope with her ever increasing abdominal pain and bowel obstruction from her

worsening ovarian cancer and her fear of dying.

I'm not sure which person helped her see that being coded would be a painful, dramatic and

futile end to her suffered life. She accepted her death and then rejected it. As the days passed, she

grew weaker and had more discomfort. She accepted that her death would be painless and quiet.

These were her wishes and she felt comforted in knowing that her family could hear her speak

them. At 51, it is hard for family to let go as well as the suffering patient. Sometimes, more so.

She was on huge amounts of opiates, hundreds of milligrams of dilaudid, astronomical amounts.

At times, she'd seem almost stuporous, waking up in pain, angry that she wasn't being adequately

treated. She had a venting gastrostomy placed which we hoped would relieve some of the

distention in her abdomen. Instead, she decided to eat a sandwich and the tube got clogged,

causing her to have even more pain and nausea. Interventional radiology was called. They

replaced the tube with a bigger lumen and said "Don't let her eat solid food"- which was relayed to

the family and the patient. This time she understood.

Because of her pain medicine needs, we would not be able to place her in a skilled nursing facility

for end of life care. Her daughter, strong and competent, had 2 very small children. Indeed; she

started labor and broke her water in her mother's hospital room early in her mother's admission.

We had no discharge plan that made sense or was feasible. No one could care for this woman at

home. She required round the clock skilled nursing. We admitted her to GIP hospice. , and

ended up getting the best of both worlds.

Daily, the hospice nurse would come and check on her. Their hospice chaplain, bereavement

coordinator, social worker all came in and provided their expertise on matters that they deal with

regularly. Her 2 sons came to visit, knowing that it would most likely be the last time they saw

Page | 37

their mother. She felt well enough that day to dress in a blue nightgown and have pictures taken

with all her children, together and separately. She posed with the baby, her granddaughter, her

sister. She looked beautiful, though it was not hard to see the sadness in her eyes. She was

relieved and so was her family, though at times they asked, why does she sleep so much more

now, when she was awake so much before?

Carefully, we tried to explain, with soft voices and loving words, how sick this woman was. She

had used up her available energy that day posing for pictures with those dearest to her.

One morning, when we were alone in the room, she took my hand and told me how she was

afraid to die. In spite of her conversion to Christianity, she told me she had done some things that

she felt ashamed of. She told me how she wanted to live and help her daughter with the new baby

and her 4 year old granddaughter. Babysit, make meals, do laundry, anything that she could do to

help her daughter feel her support and loved. She cried, knowing that this would not be the case.

We talked about forgiveness. After some time she fell asleep.

From there, things progressed rapidly. One day her tube was clogged again. She was in pain,

vomiting. We had the tube replaced but this extreme wiped her out. While I was upset that it had

taken us several hours to figure out the problem, I also knew that had she been home, she would

have been so much worse off. It might have taken days to have the tube replaced. She would have

needed transport. All these things take significant toll on her frail dying body. At least here, it was

another trip to interventional radiology. Yet, even so, she was exhausted.

The next day she only spoke to me to tell me how wiped out she was. Her twin sister, railed

against the slowly evident approach of coma. Signs and symptoms of approaching death were

talked about. It was hard to accept.

Daily, hospice came to visit checking in and sharing their remarkable wisdom with me and the

floor staff. The day and evening shift nurses helped create a care plan that would help the other

nurses caring for dying patients what it means to focus on comfort. No more oxygen saturations

but a maintaining careful monitoring of pulse, respirations, facial expressions, moans, restlessness.

She was dying and to be comfortable would require more than asking her what number her pain

was at. This is when empathetic presence and ability is most needed.

We took turns, the hospice nurses, the floor nurses, the chaplains as well as the family's prayer

group, providing support for the family. Her daughter, always so strong, really the mother of her

mother, now needed deep support and nurturing.

On her final day, as her skin turned to ash and her breathing came in tiny gulps that could not

keep up, her daughter, young and wise beyond her need, stood in the room, tears welling up in

Page | 38

her eyes. She had asked me, a few days before. How do you prepare for your mother's death?

What do you do, after it happens, do you just go home; do the same things you've always done?

Pretend it didn't happen?

We gently invited her daughter to sit, her infant in my arms. He fought the pacifier, turning his

cheek, looking for the warmth of his mother's nipple. I handed the baby back to her and realized,

yes, when your Mother dies some things don't stop. Infants still need to be fed. The grocery

shopping will need to be done. The clothes taken out of the dryer and folded. But you never

forget that moment. This time in someone's life, the hours of vigiling at the bedside of someone

you love when they are dying are imprinted, coloring ones view of death and dying. One of the

most important reasons to do this work correctly, with passion and love. I was privileged to watch

this courageous, strong and loving daughter hold her dying mothers hand, while she breast fed

her month old infant. The circle of life evident and tangible.

A phone call was made to the family's church community, who came in and stayed with the

daughter and sister. The hospice nurse also stayed for about an hour and then came back later in

the day to provide support. I came in later on and there were church people, old friends, family

and nurses attending to this woman, as well as her family. I said my goodbyes to them, hugging

her daughter and sister as I left. They knew that death waited in the room. I knew we had

prepared them the best we could.

She died about 7 o'clock that evening. She was as comfortable as we were humanly able to make

her, thanks to the concerted efforts of so many people. Her body was brought to the hospital

morgue after her family said goodbye. A month of pain, fatigue, vomiting and sadness transmuted

by compassion, respectful understanding and forgiveness. Helped with medical knowledge to

ease her physical suffering. The spiritual, emotional, physical body all cared for by a twofold team

of dedicated professionals, working together to not only treat the patient, but her family as well.

Truly holistic care done routinely, due to people who care, who have experience and know that

good care of the dying helps not just the person but extends outward into the community and

beyond. We will all experience death. It is an inevitable, the end of life. Helping people to define

their life by describing to their family and care providers how they want their death to be helps

transcend the pain of grief by helping to eliminate the agony of regret. Is it an impossible task to

perform perfectly? Of course, but that doesn't mean we stop trying.

- Cheryl Waitkevich ARNP

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A Love Affair of the Soul; My Palliative Care Experience By

Teresa A. Head, RN, BSN, CHPN

Her smiling, crystal blue eyes looked me straight in the face

as she spoke, “Remember to look both ways. Sometimes you don’t see it coming from the right”.

Her crackled voice made her sound tough. She liked that.

While struggling to shed her 80 year old body like clothes that no longer fit,

even then she made me laugh. You beloved patient/teacher/friend,

you took me in with the last of your morning glory senses wide open, right there, in the ED,

the last time I saw you on a Friday afternoon in August.

I was struck by your poise, your beauty,

your composure as we joined hands;

you, me, and the ever present Guadalupe at my wrist. I offered the cool water you took so eagerly,

your dry mouth having been denied for so long. And as I watched you quench your thirst

my thirst was gone. We reviewed this past year how far you had come.

“Full circle”, we said in tandem as our hands squeezed together tightly. Next in a silent pause I heard you whisper

for the first and last time, “Even God”.

Hanging out and above, I ignored the translucent Beings watching,

awaiting your arrival. Blue eyes

clear blue eyes clear blue heaven.

I saw heaven in your eyes. And you were right.

I didn’t see it coming. The next day you were gone.

You left without telling me. Or was it that I didn’t want to know?

All I could see was the beauty and contentment of a life fully lived. And so much joy.

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GEORGE

I am afraid

I need to talk

I do not want to die

His sad, lonely eyes, said it all.

I knew I could help

I could comfort

I could listen

I could walk with him on this journey

Sally Welsh, RN

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“Truly Her Father’s Light Lives On.” (An Undergraduate Nursing Student’s Incredible Story of Her Father’s Death and Life)

James C. Pace, PhD, MDiv, ANP, BC, FAANP, FAAN.

Associate Dean of the Undergraduate Program, New York University College of Nursing

(NYUCN) and former director of the Palliative Care Nurse Practitioner Program at Vanderbilt

University School of Nursing

Catrin Svensson, BS, (Psychology), Paramedic and Senior Nursing Student, NYUCN

Accelerated Nursing Program

The following is a true story about one of my undergraduate nursing students and her

father. It beautifully portrays the love, devotion, and professionalism that exemplify the essence

and the richness of palliative and end-of-life care in diverse settings. In this case it involved an

international healthcare team. Catrin’s comments are italicized in what follows.

Not Your Usual Student

Catrin is an adult learner with a BS degree in psychology with a minor in journalism. She

has completed half of the 15 month accelerated BS program in nursing at New York University

College of Nursing. Catrin has been a paramedic in New York since 1995 and is an acclaimed

international speaker who addresses professional medical groups of between 30-600 attendees.

She is very comfortable lecturing about trauma care, Mass Casualty Incident Models (MCI), as

well as a variety of 911 scenarios and the associated roles of health care professionals. She is

also the proud daughter of an international family that originally hails from Sweden and who

lived in Hong Kong for many years. Her father, who is known throughout the world, is the

extremely successful director and founder of a lighting company with worldwide distribution.

They are a close and loving family.

Catrin’s Journey to My Office

My administrative assistant called me in the midmorning hours of final exam week to tell

me that one of my students was in tears and needed to talk to me immediately. I met the student

and showed her into my office. She was obviously distressed and tearful. She related that her

Page | 42

father was visiting her brother at his home in London and that they had just ventured out for an

early morning run. At the run’s conclusion, they separated and her brother went straight to work

while her father headed to his apartment. Catrin had been told that he apparently had suffered

sudden cardiac arrest and fell to the ground. By-standers immediately called for help. The

police were the first to arrive at Catrin’s father’s side. Although they had a defibrillator, he was

in a non- shockable rhythm. Once the ambulance arrived, they were able to successfully

defibrillate her father twice after which they had return of spontaneous circulation. He was

taken to a local London hospital but was quickly transferred to the Cardiac Intensive Care Unit

of a hospital specializing in Cardiac Care. It is estimated that her father’s “down time” was over

25 minutes. Catrin told me that she had one more final exam that she needed to take and she

was worried about whether she could postpone it. I told her that I would take care of the details

by notifying the faculty member; her main objective was to catch the next flight to London to

be with her father and family. Her mother was already flying there from her home in Sweden.

London

I was the last one in my family to arrive at the Intensive Care Unit. The inside of the

hospital building was clean, but cold in a clinical and sterile way. The doors into the ICU were

always kept locked. The visiting hours were strictly enforced, both the time spent in the room

and the number of family members allowed at the bedside. My heart was pounding and I felt

sick to my stomach. I had never imagined myself in this situation, at least not at this point in

my life or my parents’ lives. I felt that it was realistically twenty years too early for either one of

them. My dad was the definition of health. He loved life and had always lived it to its fullest

every single day. He had not yet reached retirement, was full of enthusiasm for everything that

he was involved in. He loved my mother and our family with every ounce of his body.

I entered the ICU and immediately saw my dad, intubated and lifeless in the hospital

bed. In a way he looked peaceful, like he was sleeping, but in a very abnormal and unnatural

setting. I looked at his IV pump which was infusing two different classes of sedatives. He was

being kept in a medically induced coma as he was being cooled following his tragic event. I

started to feel hopeful and confident that he was being cared for in a progressive hospital. The

doctor told me that his 12- lead EKG did not indicate an ST- elevation myocardial infarction and

that the initial CT- scan had been unremarkable in the Emergency room.

Days passed and they attempted to rewarm my father. The IV sedation was turned off,

but he did not wake up. We did not dare to discuss it at first, but we were all painfully aware of

the long-term implications of his comatose state. The days passed by without us noticing. Then,

Page | 43

one day when we arrived at the hospital, dad’s condition had suddenly changed. His blood

pressure was increasing and a visceral feeling of illness immediately came over me. My mother,

although not in the medical field, looked at me with desperation, “What is going on?” Dad was

quickly whisked away for a new CT- scan while we were left in the waiting room. We sat in

silence; I knew what was going on, my family knew what was going on, and then the attending

doctor sat us down for the dreadful “ talk.”

The CT-scan revealed exactly what we feared. The swelling of the brain was so severe

that it was starting to push down on the brain stem at the level of the foramen magnum. My

mother’s eyes were stone cold as we sat there with tears streaming down our cheeks. At that

moment we knew that our lives would never ever be the same. The man that had brought us so

much joy, laughter, enthusiasm, inspiration and meaning was no longer present in the ways

that were comfortable. The paralyzing physical pain we felt cannot be described and is

unimaginable to those that have never experienced the unnatural loss of a loved one.

We returned to Dad’s bedside. I snuck out and found the doctor as I wanted to

familiarize myself with the legal aspects of the U.K health care system. I asked the doctor if we

needed to sign a DNR order, but he explained that in the U.K. the medical professionals make

the decision whether to resuscitate the patient based on the clinical situation, the prognosis

and how it aligns with quality of life. He carefully hinted that the emotional state of the family

might not allow them to think clearly. Often family members make decisions based on acute

and distressed emotions rather than consideration for the long- term outcome of their loved

one. He made it clear to me that they would not resuscitate my dad if his heart stopped. With

the dismal CT-scan in mind I asked the doctor if we would be able to extubate my father if we

wanted to, considering that the ventilator was a form of life support. He made it clear to me

that although the hospital is “in the business of saving lives,” it could be an option since over a

week had passed and no improvement was documented. With a heavy heart, I rejoined my

family. My mother looked straight at me and asked, “Did you ask the doctor if we could take

the tube out?” Despite not having any medical background she understood the grim reality and

so did my brothers.

Ten years ago, my dad sat me down to explain that both he and my mother had chosen

to be organ donors. Without great detail, he wanted me to know their wishes in case

something happened to them. Although I had worked in the medical field for many years and

felt completely comfortable and confident about being present during end of life situations for

my patients, I resisted this conversation with my dad. I did not want to think about my own

mortality or my family members’ deaths. On a strictly personal level, death and the

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tremendous loss that would come with it, scared me! I could not imagine a life without my

parents; they were a huge source of inspiration for me, a safety net that was always there.

Although I had never had the courage to officially sign up for organ donation myself, I

always supported it whole heartedly. Because of the nature of my job, I previously tried to

imagine what it would be like for a family member to make the decision to allow organ

harvesting from a loved one. Essentially, it meant giving up all hope that things would return to

normal. It would mean that all hope of life was abandoned. Never in my wildest imagination

did I picture that my family and I would ever be faced with this situation. My brothers, mother,

and I knew how Dad defined quality of life and being confined to a bed for the rest of his life

was not something he would ever settle for. We knew that we needed to make a very difficult

but unselfish decision for our father and husband.

We requested to speak to the organ donor team. Since it is considered to be a conflict of

interest, the organ donor team is not a part of the hospital, but they worked seamlessly

together. The supervisory nurse was highly empathetic of our deep pain while at the same time

assuring us that our dad and husband would save many lives. She had an amazing ability to

make us feel in control of the events on that day despite our powerlessness over my dad’s

continuing decline. She never pushed or pressured us; she let us control the pace of the process.

She also assured us that we could stop at any point. Going through the paper work we agreed

to donate anything our father was able to give: that’s what he would have wanted.

It was important for me to be completely involved in every step from that moment on

and I did not leave my dad’s side. I held his hand when they systematically ran more specific

tests to evaluate donor compatibility and that his organs were still as strong as they appeared.

I reviewed, with the team and my family, every single step for our final day together. The

doctor offered to let us view the CT- scan before I even had time to ask him. He also visually

compared it to a “normal brain” CT scan. I asked him to do one last neuro exam with me

present the morning of the extubation to prevent possible questions in the future. Dad

remained completely unresponsive to aggressive attempts at stimulation. For my own piece of

mind, I asked to see the Fentanyl that would be available to manage any signs of discomfort

and/or dyspnea post- extubation.

The time had come. One by one we said our good byes. I told him, “Dad, if you want to

stay with us, I support you, but don’t negotiate on quality of life. Dad, we will be ok, we will

take care of each other, it’s ok for you to let go, but only if you want to.” I assured my family

that I would not leave Dad’s side. They were escorted to a family room outside the OR, where if

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they wanted to, they could re- join us, post extubation. I held my dad’s hand firmly while he

was slowly rolled out of the ICU. Although I could not really perceive the people standing there,

I could clearly feel their energy and empathy for what we were about to do.

The specialist nurse turned to me in the room. She asked me how I wanted the EKG and

Pulse oximetry monitor to be faced. As we had discussed previously, I asked her to ensure that

all alarms were turned off. I explained to her that I wanted to see the monitor at all times, but

if my family chose to come in, then turn it away from them. We turned the lights down. A

syringe was placed on the chest. Everyone was ready. I stood in front of my dad, leaned

forward and whispered to him, “Let’s do this together Dad.” I expelled the air out of the ET-

tube and I gently pulled it out. Dad gasped, a nasal trumpet was placed in his airway. His

oxygen saturation immediately started to change, I moved to the head of the bed and I

manually held his airway open. I leaned forward and I talked into his ear the whole time. My

younger brother came in; he sat down on the floor, grasped Dad’s hand and held it for the

duration of the time. It took perhaps 8 minutes before Dad took his last breath. He was free.

We had a final five minutes after his death, to say goodbye one last time before he was taken

into the adjoining operating room. Afterwards, in a very strange and unexpected way, I finally

experienced some relief. His suffering was over.

Catrin’s Journey Back to My Office

Catrin sat down in my office and told me her story. I was absolutely amazed. We both

cried tears of sadness, joy, and wonder. She very carefully told me of the nurses who made such

a difference in the care of her father because of their “therapeutic presence.” For the most part,

three nurses cared for Catrin’s father day after day and they were exemplary. She stated that as

soon as they entered the room, there was an instant “therapeutic presence” about them. She felt

enormously comforted by this fact and felt a sense of calm and confidence in his care. One day

in particular, a nurse shared a very personal story with Catrin and immediately apologized for it

because it is not what one is supposed to do as a nurse. But it was an intimate and pivotal

moment for Catrin. The nurse’s compassion, strength and abilities to care for her dad after a

very personal loss gave her newfound strength and courage to go on. “I am so thankful you told

me,” she said to him.

The nurses in a quiet and almost invisible but immensely powerful way rallied around

Catrin and her family. They placed tissue boxes and chairs in strategic places and gave them

space when they needed it. They looked the other way and allowed the family to break the

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visitors rule as far as the number of visitors at one time. Additionally, they respected the

family’s complimentary healing strategies. They made sure to place personal items back in the

same position after turning Mr. Svensson (Staffan) in bed. They spoke to him, using his name,

before and during any kind of intervention. The family truly felt that although the nurses had

never known Staffan and the kind of person that he was, they cared for him like he was a

member of their family.

Initially, the physician’s interaction with the family was minimal, probably because of the

hospital culture in the U.K. His presence increased as decisions and focus of care changed.

During the talk of extubation, the doctor instinctively and firmly denied Catrin’s request to pull

the endo- tracheal tube out. There were probably many reasons behind his initial answer of

“no”. For one, it was most likely against hospital policy. But even more importantly, the

physician considered that it could be a very traumatic experience. In the end, he granted Catrin

and her family all their end of life wishes for their father, something that has been tremendously

important for them and their healing process.

Catrin worked within the boundaries of a health care system that was very different from

the one that she knew so well in the States. She related to me that she feels a special calling to

describe the personal story of organ donation, the power of nursing and the tremendous

importance of engaging family in end of life care in order to help them heal later. The story

needs to be told from the most personal of perspectives, that is by one who truly knows what it

might mean to offer new life to one who has all but given up. Catrin was recently told that the

recipient of her father’s liver had been incredibly ill for two years, was recently discharged in

excellent condition. Two other patients were also discharged after each received a fully

functioning kidney. The heart valves and retina were also in the process of being donated. One

life ended on August 26th but many new lives began because of it.

Reflections on Death and Life

I am so thankful that Catrin was able to immediately fly to London to be with her father

and family. Critical situations such as these literally “stop the clock” on the lives that we

lead up to that point in time. All focus then (rightly) turns to the family member now in

the patient role and the family unit. One who is in such a vulnerable situation should

never be made to feel guilty or an imposition to others. I am very proud of my faculty

members who sent Catrin notes of condolence and well wishes. Catrin later informed me

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how much those messages gave her and her family strength; words of support helped her

to get through those long and strenuous days in London.

It is very clear that the nurse with a “therapeutic presence” makes a significant difference

to the family in such stressful times. Serving as the patient and family’s advocate who

helps them to maneuver the health care system(s), the nurse makes things happen

smoothly and with immediacy. The nurse makes a significant difference and is in fact

remembered forever.

Advance care planning is absolutely essential for all families to discuss prior to any major

life-changing event. Advance care plans can easily be found on the internet (for

examples, www.respectingchoices.org or www.agingwithdignity.org [FIVE WISHES])

and can be the subject of discussion during any family gathering. Knowing what a family

member wants and does not want makes future decision-making easier and clear cut

when the situation demands.

Likewise, discussions related to organ donation are critically important. There remain

many myths and fears related to organ donation that demand public education and

awareness. Family members who have personal stories to tell (such as Catrin who really

wants to educate the public about the absolute necessity of, as well as the joys associated

with, organ donation) can make significant contributions to the public’s awareness of the

need for organ donation.

Teaching our students (both pre-licensure and those in advanced practice programs)

about the need for pain and symptom management at end-of-life is essential. Advocating

for properly dosed anxiolytics and opioids significantly relieves and manages symptoms

that can potentially be traumatic to family members if not controlled. Knowledge of

active and passive euthanasia remains critical to the educational outcomes of our students

who must wrestle with the ethical challenges faced by nurses on the front lines of care.

Teaching family members about the risks and benefits of relieving pain and controlling

symptoms takes a great deal of therapeutic communication skills and attention to fine

details on the part of nurses.

Catrin demonstrated at every point in the trajectory what it means to advocate for the

importance of involving family in all aspects of the care trajectory to include end-of-life.

Most families want to be involved in most, if not all, of the care activities provided for

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their loved ones. Staff and administrative support for the ways families can participate in

caring activities allows for a facilitated grief trajectory with significantly less feelings of

guilt, regret, and/or sorrow.

Organ donation saves lives. Health care professionals need to take the lead in advocating

for a united voice to donate. Making this clear and personal on the back of one’s driver’s

license or making it plain in an advanced care directive is crucial to having a clear

understanding of the patient’s mindset.

Palliative and end-of-life care is truly like none other in the health care milieu. Nurses

who care for patients and families in life and death scenarios are blessed to be able to

care for patients in their most vulnerable and needy situations. Palliative care brings

together all of the arts and sciences allowing its members to communicate in

compassionate ways, practice with sensitivity, communicate lovingly, and truly

understand the beauty of life and living in all of its magnificent diversity.

Catrin’s father was described as “lighting up the room” whenever he made his entrance.

His work was about the business of lighting as well. As expressed so lovingly by his

daughter, and now by those who live lives of greater quality because of his generosity,

surely, Catrin’s father’s light lives on.

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Teaching Palliative Care to Graduate Students through Example

Jeanne Weggel, Practitioner and Teacher in Palliative Care

Warmth, comfort, and honesty are life-changing qualities that palliative care patients desire. It requires years of

experience and a soft soul to truly develop the skills necessary to holistically care for end-of-life patients. These are the

accomplishments that Jeanne Weggel, RN, MS, APNP, has mastered. Throughout her career she has become an expert in

the field due to her management skills, educational background, patient communication skills, and relationship decorum.

This purpose of this paper is to describe the talent of this advanced practice nurse through the eyes of students

who shadowed her during a graduate clinical. Students shared the information about their clinical with each other and a

faculty member and an undergraduate student identified the following themes and examples from the information shared

by the graduate students.

Management Skills and Prioritization

It is no secret that time management and patient prioritization are necessities in the nursing field. Jeanne

displayed her organizational process to her students as she wrote-up her daily plan. They commented on the streamline

process of her day and were amazed at how she smoothly integrated changes or made shifts in her prioritization. One

student stated, “She took the time needed with each patient to allow them to understand what was going to happen.” Even

if extra time shifted her busy schedule, Jeanne deemed it time well spent.

Her management skills in patient care went beyond appreciation from her students. One student observed, “The

providers often seek out Jeanne and ask her about patient and family wishes, expectations, etc. Jeanne [said] that when

she first came, her daily list of people was in the single digits, and the more the providers and staff knew what she was

capable of doing, the list grew and grew. I am assuming that it all relates to how capable the providers and staff feel that

Jeanne is...a quality in which she has proven time and time again.” Other students were amazed at the amount of work

she completed for providers, and case managers.

Even though Jeanne accepted a hefty workload from her providers, she kept a team approach at her forefront. She

was never above any question; whether it came from a student, physician, family member, or patient. One student

appreciated the fact that she didn’t undermine a physician in front of patients. After the provider left the patient’s room

she would simply clarify the “plan” to the patient and, if necessary, would later follow-up with the physician in private. A

student reflected her overall objective, stating, “She is committed to being a part of a team that cares for these clients,”

including them in decisions about their future.

Educational Knowledge and Expertise

Jeanne obtained her master’s degree in advanced practice nursing from the University of Wisconsin Eau Claire

and has worked in palliative care for eleven years. Her educational background, knowledge of patient care, and years of

expertise enhance the skills she has acquired. Even with her extensive degree, Jeanne stresses to her students the

importance of ongoing education with evidence-based practice. The students learned research proven advice “can greatly

affect the direction a family is leaning.” One student acknowledged her reason for staying current with research as to

better inform the patient of their life altering choices. With Jeanne, the understanding and comfort of her patients come

first.

Evidence-based research is an integrated part of the nursing process; however, without solid pillars of practice, the

action would not be supported. While a student was completing one of the required readings for her class, she quickly

realized the key ingredients in Nurses and families: A guide to family assessment and intervention (Wright & Leahey,

2013), were “an integral part of Jeanne’s practice and used in all patient/family interactions. These included therapeutic

conversations, proper manners, family ecomaps, therapeutic questions, and commending family/individual strengths”

(Wright & Leahey, 2013). Jeanne solidified to her students the importance of an educational background, intertwined

with current research, to provide exceptional patient care.

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Academic knowledge is the backbone of nursing care, yet hands-on experience cannot be learned in a textbook.

Years of practice has made Jeanne comfortable with teaching others what she has learned though experience. One student

recalled, “[a] dying patient was hospitalized on a surgical floor - and [the staff] was not used to providing comfort

care...skimped on the narcotics and were anxious to pop on the oxygen. Jeanne has to provide education about these

issues daily in her work.” Her students are amazed with the grace she uses to deliver instruction. One day, Jeanne had to

clarify to a family how tube feedings do not automatically sustain life and took the time to repeat information with

anatomical explanations until they fully understood.

Throughout this clinical the students realized the need for a nurse role-model and graduate mentor faculty to

accomplish palliative tasks with the grace and experience that Jeanne possessed. During family care meetings, due to “her

extensive hospice background, [Jeanne] was able to answer the more intricate questions”, recalled a student. Because she

can describe the end-of-life process to patients/families and provide direct examples of what will happen if there is no

plan, they are more receptive to the importance of making a decision. A student watched Jeanne work in awe and

reflected, “It is just a complicated and painful process for families. Jeanne really puts her heart and soul into it.” A

student commented on her experience saying, “I was unaware of this important position that an APN could have and how

influential an APN could be when it comes to end-of-life situations. Jeanne demonstrated what I saw as a special role for

clients and families as they are in the hospital and having to make those very difficult decisions.”

Communication

When approaching a conversation with a family about end-of-life decisions, a nurse has to be careful with the way

information is presented. Every student that shadowed Jeanne commented on her talented, gentle delivery of difficult

topics. One student even mentioned that she was making a list of “Jeanneisms” for her career and she was looking

forward to practicing them throughout the rest of her profession. Jeanne communicated with her patients and families

through active listening, speech, and therapeutic touch.

One student stated that she realized with Jeanne it wasn’t always what she said, but how she let the family speak.

She would simply be “providing anticipatory guidance to families about the dying process, preparing families for what

‘could happen next,’ laying out options and supporting families with making choices for their loved ones.” To keep the

meetings effective and productive, Jeanne praised families in their involvement in their loved-ones care and hard work to

respect their wishes. Each member of these meetings felt legitimately heard. This tactic allowed families to validate their

feelings and receive closure about what is going to occur.

Jeanne planned time for groups to reflect on the personality of their loved one to make a decision better rooted in

his/her wishes. Through her word choice, one student stated, “She has an uncanny way of calming patients about the facts

of making themselves DNR. She is calm, sensitive, and always reminds patients that a DNR does not mean that no care

will be done if they come into the hospital.” Calmly easing her patients into reality is a sincere gift that will not be

forgotten by the students that witnessed Jeanne’s ability. Her students described the talents unique to Jeanne by stating,

“She has a fabulous way of approaching difficult situations; nonthreatening, supportive and truly present with each and

every interaction. Jeanne is very patient, and treats every family like they are the only family she has to deal with. She's

got an incredible gift that all nurses should see.”

Word choice was a significant part of the communication between Jeanne and the families she worked with.

Students noticed one of her vital talents was her presence when she spoke as it provided her words with more meaning

and power behind their sincerity. Throughout her career Jeanne had retained phrases that the students heard her use on

different patients. These included; “I am pulling for you, I am thinking of you, it will be for the best, and he/she will pass

gently and softly.” The students were amazed at how well these words were received and the difference she could create

with a single phrase.

Jeanne demonstrated for her students that silence and physical touch can be even more powerful than verbal

support. A student valued Jeanne’s ability to recognize the patient’s desires and said, “She is very generous with touching

a patient’s arms and moving into ‘their space’.” Jeanne had a special sense of when to intervene with the patient and

family and make that physical connection. Her touch, sustained with understanding, was extremely therapeutic to her

clients seeking strength in their emotional support.

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Relationships

Relationships built with patients, families, and staff are essential to a successful work environment, which Jeanne

has mastered. It was obvious to her students, who interacted with numerous personnel, that it required time and practice

to build her strong relationships. Her connections with others were based on a deep trust and mutual respect.

To ensure that everyone in the room considered themselves valued, Jeanne practiced names and made extra notes

on tidbits about significant others. A student recalled that when Jeanne used first names it personalized the interactions

and allowed everyone to feel welcome to participate. When she exited the room she wrote down a special memory about

the family so she could provide something meaningful in a card at a later date.

Jeanne was present for a family throughout their entire illness experience and not merely during an emergency.

Her students observed that she saw value in allowing the patients to build a rapport with her and slowly “laid the

groundwork” to ensure that her face was a friendly one and not one that accompanied a crisis. Jeanne became a dear part

of many families during this difficult time. One student realized that “families seem to light –up when they see Jeanne’s

familiar face”, which was a trait they aspired to develop.

The relationships that Jeanne made with her clients are life-long. A student observed, “Jeanne got a letter today in

the mail from a patient who she gave a blanket to two years ago stating their family member had just passed, but how they

wore that blanket every day since being discharged.” These small gestures are part of what made Jeanne so artistic at

palliative care.

Conclusion

Comments posted by the students are a true testament to her talent, career, and personality. Through her ability to

manage patient care, Jeanne is a character witness to the nursing field in a truly competent manner. She has established

her career into one of lifelong learning which deserves respect and acknowledgement. The experience she has acquired

though clinical practice serves as an example of true communication skills and development. The life-long connections

she makes with her patients stand the test of time. There is a call for palliative care nurses like Jeanne who are willing to

immerse themselves in the needs of their patients. So much was learned from Jeanne’s gifts and her natural desire to

better the life of others. Her students were lucky enough to witness these changes and this article serves as confirmation of

the difference a nurse with “Jeanneisms” can make in palliative care.