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“Death is not the opposite of life, but a part of it.”

— Haruki Murakami

End of Life Care


Temple University School of Journalism, 2014


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End of Life Care


Table of Contents I. Prologue II. Nursing Students and the Dying

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III. Saying Goodbye

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IV. Hospice

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V. The Cousin of Death` VI. Epilogue

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I Prologue

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One of the best things about life is that nothing is permanent. Pain, suffering, loneliness, anger and even sorrow. All of these things eventually heal over time. On the other hand, the worst part about life is also that nothing is permanent. Love, health, success, good fortune. All of them are here today and gone in a flash. For it’s entire history mankind has always known that life is not permanent. Once health starts to fade at the end of our lives, we all rely on some of the medical advances to try and eek out a few more years. This is both the saddest and most macabre truth of the world we live in. The luckiest of us have not had to go through losing a loved one yet. The rest of us have. It is never easy to say goodbye to someone who we knew for most of our lives. Whether it be a friend, a parent or a child, the amount of loss is still felt throughout all walks of life and all different kinds of people.

Although some pass suddenly through the night, most of us aren’t as lucky. A majority of us have to sit and watch our loved ones slowly decay in some of the most painful experiences that the person has ever gone through. After everything is said and done, the loved one leaves and the rest of us are left to sift through the pieces. Death affects us in different ways. Some don’t deal with the pain until it comes to deal with us, others are more open about it and deal with it publically. End of life care is something that will eventually affect us all, dealing with it is what makes it unique.

-Patrick McPeak

Prologue

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II Nursing Students & The Dying

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Amanda Gramiak BY KELSEY STANGER

“When I saw the tube being taken out by the repertory therapist I felt like I had to take extra breaths for him.” Amanda Gramiak, a 21-year-old nursing student at Gwyenedd Mercy College, recently experienced death in a new way. During her time working with end of life care as part of her training, two patients passed away whom she was caring for. “We talk about it sometimes (in class) like how it’s awkward dealing with the family and how you have to prepare the family for what’s coming and everything, but they don’t really tell you how to talk to the patients or how to deal with it yourself.” For Amanda the experiences were heartbreaking. The first of the patients was a 36-year-old man who suffered from HIV since he was 20. “He hadn’t put urine out for like 10 days so all his organs were failing. When I saw him it was really scary to see someone so young, somebody that’s only a couple years older than me experiencing something like that.” Amanda recalls how depressing the atmosphere of the room was when she entered it the last time she saw him. “I had to remember that you have to be professional about it, you have to clean him up and (make him) look professional for them (the family) to see him for the last time.” Gramiak explained that students are always instructed to treat the person and not the monitor, saying that the heart rate on screen often looks like it is getting better after tubes have been removed. “I was instructed to remember to turn the monitor off because it gives the family false hope. They start to think, “Oh look his numbers are good.” She explained that when the tubes were removed she felt a panic start to take over, “I felt like I had to take extra breaths for him. I’ve never actually seen anybody dying like that before.”

Nursing Students & The Dying`

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Amanda Grimiak puts together her nursing textbooks. Grimiak has started her clinicals this past spring semester.

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One of Grimiak’s textbooks. After passing her clinicals, Grimiak will finally earn her B.S.N.

Nursing Students & The Dying`

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The main tool of a nurse. The stethoscope allows the nurse to hear heartbeats, check breathing and take blood pressure, all very important vital signs.

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The whole nursing package of Amanda Grimiak. The textbooks contain everything she will need to know about her nursing profession.

Nursing Students & The Dying`

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Nursing Students & The Dying`

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III Saying Goodbye

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Karen Hack BY MATTHEW LEISTER

Karen Hack, 57, is a registered nurse who resides in Mexico, Pennsylvania. There is one traffic light in the town and the local pizzeria also doubles as the town gift shop. The people are conservative and friendly. She works at a local nursing home doing mainly paperwork but she has a long history as a homecare hospice nurse. On her first day on the job, her patient was already dead when she arrived. The family piled together on the living room floor and sobbed upon hearing the news. Karen was the rock. For her, being a hospice nurse is not just about helping the patients; it is about helping the families. Karen is also a huge advocate for terminally ill patients having as much access to pain medication as possible. She once was published in People Magazine regarding this subject: “Doctors and nurses as well as families must understand that addiction to narcotics in terminal care is irrelevant. These people are dying: give them the quality of life they deserve right up to the end. Keep them clear of mind to make their own choices. This can be done with educated medical personnel controlling their doses. These patients wouldn’t consider suicide — assisted or unassisted — if they could live until they died.” Karen is married with three children aged 35, 30, and 20. She had to learn how to compartmentalize early in her career. Being on-call while raising a family is always a challenge but her kids grew up to understand her lifestyle. She always had a second family that she was taking care of. She cared for many different patients in her career. Some had large families while others were alone. Some fought every step of the way while others greeted the end with open arms. About 10% of her patient’s were able to recover and continue to live their lives. Unfortunately, in her line of work, most of them didn’t make it. There was always one constant. Everybody was grateful for her. Her biggest challenge came when her father, Harry, developed mouth cancer and was put into hospice care (the same company that Karen worked for). Her relationship with her father was tumultuous. When it came to the end, Karen’s mother argued about giving him pain medication, but in the end her expertise could not be questioned as Harry’s pain became to severe for anybody to watch — let alone have him tolerate. When the end came the pain hit her hard. “He might not have been the best father, but he was my father.”

Saying Goodbye

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Memories of Harry Wagner sitting with his favorite dog Pookie. He was never found without a cigarette in his mouth.

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Rachel Britcher conceived and completed a project in design school dedicated to her late grandfather, Harry Wagner. A pack of cigarettes made of memories.

Saying Goodbye

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Each cigarette contained a fact about Harry Wagner.

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Harry Wagner, as a young man, remembered in the photo album possessed by his daughter, Karen Hack.

Saying Goodbye

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Rachel didn’t get a chance to know her grandfather very well.

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Karen Hack’s (maiden name Wagner) uniform that she wore in nursing school. Due to her focus in homecare she was never required to wear the outfit again.

Saying Goodbye

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Karen Hack, 57, had to say goodbye to her father, Harry Wagner. “He might not have been

the best father, but he was my father.�

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Saying Goodbye

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IV Hospice

Hospice

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Nina McKissock BY INDIRA JIMENEZ

“It’s not about religion...” Nina McKissock says as we sit in her light-filled loft on 5th

and Vine, the morning of Monday March 10th, 2014. Never meeting this individual at all, with only the premise of discussing her 30+ year experience as nurse and her last 13 working in hospice, it was a game of rolling dice anticipating what our conversation would entail. When I walk in however, I’m immediately at ease. Her calm and warm demeanor complements her space, where eclectic artwork, bookshelves filled with literary works, and a black and white spotted pooch also live. With the buzz of fresh brewed coffee coursing through my body, notebook and camera in hand, I soon realize that this was going to be quite the morning. After a quick explanation of the questions I’m going to ask her and the premise of this project, Nina assembles her orange-red pashmina around her shoulders crosses her legs. She’s ready. For about the next hour and a half, I ask her about the dealings of death she’s had to face, especially how her personal views played in: “I often wonder, what would people be like on their deathbed?” At first, I am speechless. Not in an offended way by any means, just in the pure sense of speechlessness. I myself had never thought to think about that, how are personalities and ways of of thinking about death can either stay the same or alter. We go on to discuss her time as a hospice nurse, dealing with tragedy, whether sudden or long awaited, forming connections with families and the dying. In her book, From Sun to Sun, (which is in the final stages of editing) where Nina divulges in her career and how individual patients of hers has helped shape her view of the line between life and death. The birth of her literary endeavor? A collection of these patients’ stories, an ode to the undeniable connection she has been able to establish with each and everyone of them. “There’s little deaths all day long,” Nina says, as I grow even more and more comfortable on her white cloud of an armchair. Hearing her story, her life, her views, are all a model of how society should embrace death, rather than cower in fear of it. Nina’s take on the fine line of death is something that I myself will never cease to forget: “It’s all about the breath. Breath to no breath. Life is the breath.”

Hospice

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A few old photographs of lost loved ones decorate the shelf of Nina McKissock’s boudoir.

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Nina McKissock, a former hopsice nurse, sits in quiet relfection in her loft on 5th and Vine streets.

Hospice

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McKissock tells the story of what a patients last moments in life are like for those caring for them. She was glad to share that hospice isn’t necessarily a death sentence.

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Hospice

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V The Cousin of Death

Hospice

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Paul Quibing Qian BY Hua zong

As an anesthesiologist in Ocean Medical Center, Paul Qiubing Qian provides the medical definition of death. For medical knowledge, the death is the brain dying. Doctors will use lights to check the patient’s pupils to see if they have a reaction or dialate. Combined with the lack of electrical signals coming from the brain, doctors will confirm the death. Doctors duties are to keep patients away from death, or delay the death enough to extend life. But if death comes, doctors have a plan to tell the family what happened. “Sometimes we do feel guilty when we didn’t do the best job”, says Doctor Qian, “Especially for some, medical history is hidden.” But for some patients with horrible diseases such as the end stages of cancer, death would end their suffering. In this case, doctors will feel less upset because the pain is not only physical, but emotional.

Hospice

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Flags of the Ocean Medical Center blow in the breeze in Ocean County, NJ. Dr. Paul Quian acts as an anesthesiologist in the New Jersey hospital.

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The prayer room of Ocean Medical Center. Many families of patients take solace in this room after being with their loved ones.

Hospice

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Dr. Paul Quian sits in his office in the Ocean Medical Center. He acts as an anesthesiologist there.

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Hospice

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VI Epilogue

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Matthew Leister I have had two experiences in my life when I was legitimately concerned I could die. I got caught in a riptide. I couldn’t swim anymore and I gave up. I actually gave up. It got to that point. A minute later a surfer came by and put me on his board. The second time, I was scuba diving at a 100 ft. depth (I was adventurous when I was younger) and my oxygen tube stopped releasing air. Side note: When you are scuba diving you have to ascend slowly to prevent getting “the bends.” You also have to exhale as you ascend to prevent your lungs from exploding inside of your chest. No joke. So, I had to slowly ascend while breathing out for 100 ft. I almost passed out but I made it. I should avoid the ocean. I never think about death. I don’t know if this is a subconscious decision or not. I don’t want to die, but at the same time I don’t fear it. I honestly don’t care what happens to my body when I die. Cremation, burial, or donation to science doesn’t matter to me — I’ll be dead. What I do care about is my loved ones knowing how I felt about them. I say “I love you” often to the people I care about; too often. Maybe, I do think about death more than I realize.

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Kelsey Stanger

Death has always been something that’s been present in my life. I’ve lost quite a few family members and have to gone to close to 15 funerals in my 21 years of living. I lost two of my grandparents in a span of two months, and while their deaths were the first to really knock me down, it wasn’t until my cousin Chris passed away that death managed to take apart of me with it. My cousin was only 27 when he was accidently shot while hosting a Superbowl party in his home. I remember the exact moment we got the call and my mom telling me he had been shot. For a brief second I thought to myself that he’d be ok, because that was the kind of person he was. And then she said he was gone and it was like the whole world shifted because it was so final. There was no hope, no saying goodbye. He was dead. I think the most surreal moment I’ve ever experienced was saying goodbye to him before they closed the casket. When I saw him for the first time it took everything I had to not completely collapse, but there was something comforting about him being dressed in an Eagles jersey with a beer in his hands. But saying goodbye for the last time was even worse. I had never kissed a dead body before, but he was my cousin and I had always kissed him goodbye, so it didn’t seem like this time should be different. It was only for a brief second but it felt like time stopped and I just froze. It was as if death just smacked me in the face and it became real that I was centimeters away from

the dead body of my cousin. For me that’s what death became. It’s the scent of his body, the coldness of the casket, and the feeling of hard marble when I kissed his forehead. When I think about death I will always think about those moments; waking up the day after the funeral when everyone expects you to go back to normal, months of crying myself to sleep, waking up every morning and having that split second before you remember what happened before the grief takes over again. Death found a way to bury itself in me. I’d like to be one of those people who don’t fear death and who look at it as simply a part of life, but it terrifies me. My heart drops every time I see someone calling unexpectedly or when a family member tells me they need to talk to me. I have to believe that there’s something else out there and that one day I’ll see him again, because honestly that thought is the only thing that got me through it. Losing Chris changed me completely. It made everything seem so much more valuable and I find myself just looking at people trying to remember every little feature of them. I take pictures with everyone because I don’t have any with him. I think about death a lot and somehow I still can’t wrap my mind around it. I don’t understand how at one minute you’re alive and the next you’re just gone. It’s been 5 years, 1 month, and 19 days since he died and I’ve thought about him every single one. Death will always be with me, because he never will.

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Indira Jimenez

Death, dying, mortal, immortal, eternal. Our society’s fascination with youth and our detest for moving on to the next life has always been an enigma to me. Maybe it’s just due to the fact I’ve never been hit death in such a harsh way like some of my peers have; the closest tragedy in my life was when I found out that my grandfather was diagnosed with Alzheimer’s, caught early however, and he’s doing awesome right now, healthy and happy. Nonetheless, I’ve never been oblivious to the inevitable fact that we all die, and that’s why it’s essential to live life to the fullest, as much as a cliche as that is. But when we do get to that point, how are we to celebrate or commemorate the end? I remember when I was pretty young, a movie or TV program I can’t seem to remember, featured a traditional New Orleans funeral. The procession had a sense of sadness, with the loss being uplifted by the smooth wail of a trumpet and drums, while the loved ones and friends of the deceased all sauntered in unison to the beat, small black and white parasols in hand. I felt for them, assuming that this was all there was to the custom. The song stopped, and the trumpet went from its sad siren song to a riotous and jazzy rendition of “When the Saints”, prompting the funeral attendees to shed their sorrow and end the procession in such a joy that it didn’t seem like a funeral at all. It was right then and there I decided, if I couldn’t have exactly that for when I myself pass from this earth, that my funeral or way of leaving this world will not just be in sorrow, but in lucidity and peace. All in all, I’m a big believer in that death is not indeed the end: we go on to the next life, maybe in another form or presence, but it’s not just over. It’s a part of our universal journey in experiencing.

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Patrick McPeak I have never been afraid of death. Growing up Catholic, I spent Sunday mornings at my grandmother’s house making pony-bead rosaries and other Catholic crafts with my brother. My grandmother always let us know that if we were “good Catholic boys” that God would take care of us when we died. I don’t necessarily believe that heaven is a place up in the clouds or that I’ll have to convince St. Peter to let me through the pearly gates anymore but I’ll never forget the first experience I had with the passing of a loved one I can clearly remember the cool, fall morning in September of 2002. I was 12 years old and in the sixth grade. We always had the same neighbors growing up, a couple, Barbara and Hershel Shipp. Hershel was the son of a pimp and one of his “girls,” who grew up in St. Louis but moved to Philadelphia in his twenties to get a job and live with his brother. I always knew Hershel as a retired man who loved sweets, no matter how bad is diabetes got. As I got closer to high school, his daily desserts finally caught up to him and he passed due to complications of the vile disease. To this day, Hershel’s funeral was one of the most beautiful events I’ve ever attended. A member of Bethlehem Baptist Church in Pennlyn, Pennsylvania, the choir was it’s own musical act that toured the country singing in gospel competitions and brought in award after award. I can even remember they had a display of CDs for sale in the lobby. Before the funeral started, guests were prompted to walk in front of the open casket and say their final goodbyes to Hershel. My brother was just as upset as he was when Hershel told him that he had to put down his beloved German Shepard, Major. I remember touching his forearm and letting him no that no one was going to tell him he couldn’t have another big slice of pie anymore. After we sat down, the choir stood up and started their first couple songs to start

the service. I was like any other Catholic boy. I would look at the song list for mass and get excited when there were only four songs on it, which meant mass would be a bit shorter and I could go back to playing video games in my living room. That day I was completely blown away by the power of song. I can clearly remember and almost hear the lead vocalist’s rendition of “Goin’ Up Yonder” like it was the other day. I thought I would be in for a somber service but there wasn’t a single set of hands silent that morning. We sang for Hershel because we were celebrating his life instead of mourning his passing. After we had finished the two-hour service, everyone spent another half-hour catching up and chatting before the pastor instructed us to move downstairs for a meal. The smell of the fried chicken and pork “chitlins” sometimes still haunts my nose and taste buds. Hershel’s daughter had cooked up what seemed like a hundred pounds of chicken and all of Hershel’s favorite foods. We ate, drank and told the funniest stories about Hershel we could. I couldn’t believe that this was what a funeral was. Although I’ve been to many services that I shouldn’t have had to attend, I’ve always cast my own vision of my first experience of a funeral over them. When I attended my buddy Jakub’s funeral last year, I tried to picture all of the things we would be doing together when I finally kicked the bucket. Go fishing, drinking beer, eating cake and finishing out the day by sitting around a fire talking about the trouble we made in our short time together. So when people ask me if I’m afraid to die, I always tell them no. I’ve got plenty of friends to catch up with and I’m sure Jake has already got some beers on ice.

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End of Life Care