Expressions Creative Works from the Members of HPNA
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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. Page | 2
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. Page | 8
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 Page | 11
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 Page | 16
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
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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. st One day, on one of my 1 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 Hildaâ€™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 donâ€™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. Page | 26
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
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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
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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 | 30
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 | 31
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. Page | 33
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 | 35
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 | 36
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 Page | 37
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 Page | 38
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 ETtube 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 Page | 39
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 Page | 40
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 Page | 41
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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Published on Dec 12, 2013