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  1. The call came in while at work. My mom's brother Steve had been rushed to a hospital. He was dying. I decided to go on the weekend when I was off, as my partner at work was out sick. I flew into Canada and made my way to the hospital. My aunt, a retired RN, was there with him and had not left the bedside for the last five days since his admission. They had been married 51 years and did everything together. She decided to go home for a few hours to freshen up, while I stayed with him along with his older daughter Carol and her family who came a few hours later. As I turned and positioned him gently, he screamed in pain. His prostate cancer that had been in remission for 16 years had come back with a vengeance and spread to his bones and lungs with metastasis to his spine. He had an ineffective cough and had phlegm in his throat that we could not suction as it was deep. His lungs were clear. Every time he coughed he would begin to panic as he felt his airway was blocked. He would ask to be lifted to sit up higher and struggle to breathe. I constantly heard the death rattle and saw him struggle to breathe. It was hard to watch and I felt helpless wondering how I could ease his suffering. His mind was clear and he was fully conscious. His nurse Laly came in. I tentatively asked her if his pain medication protocol could be reevaluated as it did not seem to be helping him. I also asked if we could up the oxygen as he was only on 1.5 liter due to his Chronic Obstructive Pulmonary Disease (COPD). "At this point Laly, we would like him to be comfortable. His COPD causing respiratory depression when the oxygen is increased is the least of our worries. What do you think?" She smiled compassionately. "I absolutely agree" she nodded as she adjusted the oxygen flow meter. She then left to page the MD in charge and ask him to adjust the Dilaudid IV for pain. Later the doctor came and we talked about the plan of care. He would not be transferred to a hospice bed as there were none available but would get the same care on the floor. As uncle slipped in and out of consciousness he wanted me to sit next to him and hold his hand. "Do you know Annie that I am waiting to go? I am going on a journey. The vehicle has not yet come for me. It will come. It has so many wheels and has to make so many stops----." I smiled through my tears. "It will come uncle, in it's time." "Annie, sometimes when I see you, I think your mom is sitting next to me and Jerry my brother is standing nearby." Both uncle Jerry and my mom Mary had passed years ago. I am sure they were visiting him unseen by me but clearly visible to him. His eyes clouded and he fell asleep his breath rasping.I gently removed my hand but his grip tightened. "Annie, don't go!" "I am right here. You are safe." He lapsed back into a fitful sleep. Aunty and I looked at each other. "Aunty Bea, you have to give him permission to go", I said softly. She sobbed and shook her head. "I know. I have to. This is so hard. I can't bear to see him suffer." Her composure that had been rock solid throughout the day, when visitors had come from all over Canada and the United States, crumpled now that they were all gone and she broke down sobs racking her body. RN Lally came in to see both of us in tears crying softly as he was in a double room with another patient behind the curtain. Her eyes filled and she walked out. In half an hour she came back and signaled us with her eyes to stay quiet. "The doctor told me that he needs to be moved to another room as his condition is worsening and he needs some medical procedures done." She announced loudly. She quickly packed our stuff and took it to a private room, two doors down. A couple of other nurses came and helped move his bed over. She even got us two sleeping sofa chairs for the night. This room was big, spacious, with a bathroom attached with a stand-up shower. It had a window ledge where you could sit and get a beautiful view of the city. Once we were settled she told us that they gave uncle a private room so that he could be surrounded by his family in peace as he died. "I see that you are a prayerful family. This way you can say your prayers, sing and not be afraid that you are disturbing anyone. There is a window on one side and the hallway on the other side of this room. So you can sing, cry, talk and it won't disturb anyone." That night I forced aunty to sleep and I sat with uncle my hand linked with his. Once aunty got up around 4 am we kept him company till dawn. She gave him permission to leave and promised him that she would take good care of their three girls. "Steve we have been together for 53 years and been married for 51 years. We always did things together. I wish I could come with you and die with you but I have to stay behind for our daughters. When you go to heaven advocate for our family with Jesus. It's ok to go. I will take good care of our daughters", she sobbed, her face on his chest, her hands around his neck as she leaned over the bed. I cried stifling my sobs in the dark listening to her, my heartbreaking for her. I wiped my tears, got up and moved uncle to one side of the bed. "Come, aunty, get into the bed with him. This is the best thing you can do for him and you." She got into the bed and cradled him gently. He slept peacefully in her arms. The next day family and friends started pouring in, some driving as far as New York, Detroit, and Chicago to see him. My flight back to New York was in the evening and before I left, I kissed him on his forehead leaving my lipstick on him! His eyes flew open and he asked me where I was going! I told him I was leaving to go home but was leaving my lipstick and prayers behind! Uncle hated lipstick and that had his daughters smiling through their tears. We said goodbye with our eyes and I walked away knowing I would never see him alive again. He lived for three more days. Everyone who had planned to fly in or drive in to see him got a chance to see him. Early morning on the third day, aunty cradled him and said the Divine Mercy Chaplet in his ear and sang a song about the Holy Spirit. As she finished the song, she looked at his face. His breath had stopped and he had slipped from this world to the next. My family drove to attend the funeral. When we were at the gravesite we realized that it was close to the airport and that a plane took up every 30 seconds. When the coffin was lowered into the grave, a jet roared overhead, the familiar Orange colors of Air India, the official plane of India, his birth country. Just like he had told me his vehicle had come to take him home!
  2. Nurse Lyd

    An Ode to Hospice Nursing

    I’m a hospice nurse. At least, I was a hospice nurse until about a year ago, at which point I finally decided to choose life over death. Back then my mornings consisted of pounding the New York City pavement. I’d rush to catch the express train at the corner of Lexington Avenue and 59th Street. I worked in downtown Manhattan, and my agency’s building wasn’t far from the New York Stock Exchange. During my train rides, I’d sit next to people clad in black suits toting leather briefcases. I always suspected they worked in some Wall Street brokerage firm. We’d all get off the train and rush down the same worn cobblestone streets to make it to our desks before 9:00 a.m. I blended in pretty well since I dressed in business casual clothing. I suspect that’s where the similarities ended, though. You see, most offices in downtown Manhattan were busy crunching numbers. Mine was making sure that people lived the last few months of their lives with purpose, dignity, and grace. You’ll often hear people who work in hospice describe it as a philosophy. I’d agree with that. It’s the belief that people with an end-stage illness should maintain the highest possible quality of life. And that’s what attracted me to hospice in the first place. I’ve always seen life as being full of journeys. And to me, death is one of the most important trips that any of us will ever take. I wanted to make a difference during that process. By this time I’d been a hospice nurse for nine years. I’d been a hospice case manager, hospice liaison, hospice residence nurse, and a palliative care registered nurse (RN) specialist. At the downtown agency, I was a hospice RN referral coordinator. And somewhere in-between I’d become a certified hospice and palliative nurse too. I had several responsibilities as a referral coordinator. I reviewed hospice referrals, assessed for eligibility, and set up hospice admission services. It sounds way more simple than it actually was due to the sheer number of referrals we received every day. Not only were we covering the entirety of New York City, but a large part of Long Island too. The other reason my job was tough had to do with the complex situations that came with being a hospice nurse. You see, the role of a hospice nurse contains several jobs in one—sort of like those Russian nesting doll sets. Nurses play a vital part in a patient’s hospice experience. The hospice care team is an interdisciplinary team. But the nurse is the care team member that patients and families see and communicate with most. Thus, the hospice RN must wear several hats to deal with highly charged situations. Caregiver, teacher, consultant, confidant, advocate, you name it. A hospice nurse seems to do it all. And to be honest, I’ve even found myself in the role of philosopher once or twice. Dealing with death often brings up some heavy psychological and spiritual questions. You know Elisabeth Kubler Ross’ model of the five stages of grief? Well, I’ve walked patients through every single one of those stages. I’ve been with them from the point of diagnosis to their last breath. I’ve been with them through tears of rage, denial, and during that final point of acceptance. Looking back at it now, I cherish every moment of it. I’d gotten pretty darn good at my job. So good, in fact, that I got assigned to pediatric referrals. Adult patients are one thing, but pediatric hospice patients are a different matter. They bring higher complexity, blurrier guidelines, more emotions, and tenacious care team members. It required a certain amount of delicacy, and I handled my pediatric patients with kid gloves. I started to notice that the stress of the job was taking more of a toll on me. The constant focus on death wasn’t sitting well with me anymore. Plus, it’s never easy to deal with having to pronounce a sick child as being “hospice appropriate.” There was one pediatric case that was particularly heartbreaking. A source referred a child to us much later than they should have. It involved a delayed referral, an unclear care plan, and complicated family dynamics. This all resulted in the child dying right before the assigned admission RN was able to arrive. The conclusion was unsettling because it happened despite my team’s best efforts. After everyone's hard work, this was a devastating result to face. Unfortunately, hospice is still an underutilized service. This is due to prejudices against the word “hospice" and pre-conceived notions about it. And believe it or not, this applies to the prejudices of other healthcare workers too. Death before admission occurred way more often than I wanted to admit. Still, when it happened to this sweet child, it seemed to be that much more distressing for me. And I knew that after almost ten years of being a hospice nurse, I’d reached my breaking point. I went home late that evening. I'd finally left the office after sending condolences and finishing hours of charting. It again occurred to me that I’d seen enough death to last a lifetime. I remember heading back uptown on the train, once more sitting next to those people in shiny black suits. I found myself wondering what it would be like to get up every morning and not have to think about facing death. And I knew that was something that I finally wanted to choose for myself. I ended up going on a year-long sabbatical. I immersed myself in personal development programs, spirituality, new friends, travel, and hobbies. I’m currently embarking on a career as a freelance healthcare writer. Healthcare writing is the perfect balance between the right and left sides of my brain. It pleases both the nurse and the writer in me. And best of all, I feel completely alive when I do it. The way I used to feel when I was a hospice nurse. If I ever decide to go back to into the clinical arena, I’d choose the specialty of obstetrics. I'd spent a year in postpartum nursing and enjoyed it so much. I left after choosing to switch to hospice. It hasn't escaped me that the two other areas of nursing that interest me most involve the two bookends of life. Birth and death. My year away from hospice made me realize that death taught me more about life than life itself ever could. I’ve learned to cherish every moment, to understand that every breath is a miracle. I try to honor every warm hand, every mischievous eye, and every tear that I come across. And I no longer see gray hairs as something to fear. Instead, I see them as badges of honor bestowed on those lucky enough to have them. Best of all, I know I succeeded many times over in making the difference that I set out to make. Nurses everywhere provide an invaluable service to this world. They balance empathy and compassion with complex skills that help transform lives. They deserve all the accolades they receive and then some. And hospice nurses, in particular, are a rare breed that deserves the highest of praise. So often they're the rock of support that patients and families can stand on during the most trying times. I love my fellow nurses, and I want to take this moment to salute them all. And though I've moved on to more lively areas of nursing, I suspect there’s a part of me that will always be a hospice nurse.
  3. jeastridge

    The Hug Heard Around the World

    "After that, he poured water into a basin and began to wash his disciples' feet, drying them with the towel that was wrapped around him." John 13:5 I can hear muted conversations in various rooms as I walk down the hospital corridor and knock gently on the sturdy hospital room door before pushing it open to take in the scene before me: a woman of early old age disappearing into white sheets while taking short, needy gasps of air-flimsy connections to this side, her spirit already gliding away toward an irresistible kingdom of light and love. Her husband, shoulders sagging under the unwelcome weight of heavy grief, grasps her limp hand in his own. And then the son, younger than expected given his parents' age-eyes knowing and accepting, already taking in the inevitable outcome. I invite them to a corner down the hall where the weak afternoon winter sun can do its best work, concentrating light and heat, a welcome warmth for such a cold topic. The three of us stand together, and I say a few words about hospice, explaining the different ways we can help. The husband interrupts me with a question, "When can we get that tube out of her nose?" As he asks, the words crack and break, a soft thunder in our midst. Then he adds, "We've been married for sixty two years. I just want her to be peaceful if she can't get better." We then talk about honoring her wishes, trying to do what she would do if she could. As I ease the words out, I present them on a platter of choices, carefully, gently, so as not to disrupt the tenuous web of trust that is weaving between us. At the end of life, the challenge for the hospice nurse is to help the family make decisions while guiding but not controlling the conversation. The invitation is for the family to unlock their knowledge of their loved one's heart, determining what her choices would be. The hospice nurses' experience, knowledge and spiritual heart help her ask the questions and provide the information that make this path a little less rocky. The son then speaks and says, "We all agree that mom would not want to be kept going if she can't get better." His words confirm the finality of the decision, and he struggles through tears to speak them. The father looks to the son, his eyes spilling over too, and they reach toward one another, locking into an embrace of love, cemented by the pain of grief. As they hold each other, beautiful men mourning, their shoulders shake in unison, creating waves of sound that ripple around them there in the hall, and silently travel through the window, across the parking lot and into outer space, going on forever into eternity. True love doesn't end. It travels instead, at the speed of light, this powerful force wrapping itself around our universe. As a hospice nurse, I am invited to attend this ceremony of parting. I am a guest at the proceedings and must respect what is taking place, keeping my place in the holiness of the moment, as I witness communion between two men who love the best woman in their lives. My role is to serve, to hold forth the elements that allow them to hold the truth, to examine it and then partake. If I can be a simple conduit of mercy and kindness, then through some mystery of grace, this powerful love will boomerang back from the edges of time and carry them through the journey ahead. Holy One, Grant us, as nurses, the ability to serve our patients with gentleness and kindness; give us a heart of love and respect as we witness others' holy moments.
  4. jeastridge

    End of Life: The Final Word

    "If anyone is never at fault in what he says, he is a perfect man, able to keep his whole body in check." James 3:2 I reach down to touch Anne's* hand, my own fingers still chilled by the outside morning air. Her eyelids flutter, letting me know she was aware of my presence. I speak gently, trying to not disturb the threads of silence that hang heavily in the room. "How are you doing?" She does not voice a response, but the furrowed brow tells me that she is thinking of how to answer my question. As a hospice nurse, I come on the stage of life when others have played their parts and now stand silently in the wings, witnesses to life and death. The chemo team is gone, the transfusions are mostly over; the doctors with their serious pronouncements have faded into the background. Standing beside the bed are the one best friend, two of the six children, and a few others that come and go to leave their gifts of steaming soup or fragrant flowers, attempts to brighten the long journey home. Anne's eyes open and she looks at me, focusing through the curtain of pain and the blessed numbness of opiates. "I'm ok," slides out in a whisper. I stand by, struggling to find the best words, the question that might help her along the way, the voice that will not hurt, but instead help. At times like these, everything matters and the burden of that knowledge, keeps my mouth still, waiting for the Holy One to fill it with direction. The others leave the room. I hold her fingers in mine, while palpating her pulse, assessing her color, monitoring her respirations, checking her skin for signs of breaks. As I wait, the question spills out, "What is the one thing that bothers you the most about all this?" A single tear, creeps down her tissue dry cheek and she answers, "I'm afraid of leaving the children. I'm afraid that they will grow apart after I am gone. I won't be here for them to come home to." She speaks with some effort, but as the words well up, expressed from her spirit, they also relieve some of the pain, pent up in her aching heart. I have no response. None is needed. Saying the words and shedding the tear, seem to ease the crack in her heart. Her respirations even out, her eyes close, apparently more focused on the beyond. Words matter all the time. It's just that at the end of life, there are so few of them left, that we must count carefully to make sure there is no waste. That awareness keeps us from using them foolishly. As we leave the bedside of the dying, may we carry with us the desire to use our words carefully, every day, not just on the final ones. Dear God, Grant me your words today. Let me be silent or let me speak only at your prompting. Give me a renewed awareness that words matter. Amen. *Name changed to protect privacy.
  5. nursebboop1

    An Honor

    I began my practice as a hospice RN in 1996. At that time the facility was seated in a pocket of the Midwest where "hospice" was not often spoken. I worked for a small hospice that had a census of eight (yes, you read that right-more staff than patients). I had already been a licensed nurse for fifteen years, but I was new to palliative end-of-life care. As a novice in hospice nursing, I brought acquired skills in medical-surgical, psychiatric, obstetrics, triage, and home health in addition to forty-seven years of invaluable life experience. As a newly mentored hospice nurse, I was hungry for information. I soaked up everything I read and heard in a sincere effort to ensure a "good death" for my patients and families. I quickly learned that comfort was physical, emotional, and spiritual and that I would be providing comfort to the patient and family. In the case of Rosa, her family included what little family had survived her and extended to the staff and residents of this facility where she had resided for several years. This would be my "unit of care". This facility is a well known and respected long-term care facility in the Midwest that, at best, tolerated the presence of hospice providing care to their residents. They perceived themselves as being "*THE Experts" *in providing care to their elderly residents until death and we were referred to as the *"Angels of Death*". There didn't seem to be enough boxes of doughnuts or cookies brought in by our agency to allow us to become part of their care team. As I took the chart from the rack that morning I was told that Rosa "was easily agitated and had always been that way...it was just her personality". I then slipped away to a corner behind the nurses' station to gather clinical data from Rosa's chart. Rosa, at over 100 years old, had a myriad of co-morbidities including a history of breast cancer that the family had not elected to treat. She was on several medications which included Tylenol for pain. I entered her dimly lit room and saw a small woman lying in bed who appeared to be sleeping under layers of soft blankets. Within seconds she must've sensed my presence. Her beautiful searching dark eyes were fixed on me while she asked me who I was. As I turned to put my bag down I noticed a framed picture on her nightstand. The eyes looking back at me were the same eyes, but the face decades younger and breathtakingly beautiful. This was one of many pictures sitting around the room that would serve to help me piece together her story. What I learned over time of Rosa's story may seem irrelevant from a nursing perspective to some, but when providing comfort to Rosa at the end of her life the details were essential. Her life as an African American woman from the Midwest who became a famous Parisian fashion model in the early 1900s was rich with stories of success as well as unspeakable tragedy. As she spent her last weeks and days reviewing her life to herself and to others she talked, yelled, laughed, and cried. I listened and learned as she celebrated and also grieved her life. No, she was not hallucinating as some commented. This was important work for her. I had the privilege of witnessing it while not doubting for a second that it was real. Sometimes she was a child talking to her mother. Other times a spoiled young wife demanding attention from her devoted husband. She was reviewing her life. This review was important. She was in a kind of labor many do at the end of life. I was there to listen and support her as best I could--providing comfort. What was a priority for me that day was to begin my plan in getting her physically comfortable so that she could have some quality of life until her story here was over? In my physical assessment, I tried to hide my horror as I looked at the fungating tumor of her left breast. No one had prepared me for what I saw and smelled. I learned later that she had always been a "feisty woman", but the agitation that was reported by staff had to be impacted by this growing cancer that was gnawing away at this once beautiful proud body. The week before I had held an educational in-service at this facility on pain management emphasizing how untreated pain affects the patient emotionally, spiritually, and physically. The staff held onto their old beliefs about morphine--the *M WORD*. "Morphine hastened death" I obtained orders for a low dose of scheduled sub lingual Roxanol. The next day I found the patient asleep, more peaceful. The staff was not open to the possibility that she had been slept deprived due to intractable pain and was getting much-needed rest. I was able to contact a niece, Millie, who met me the next day in the dining room. She helped me understand the stories. Rosa had told me about a fire, and her babies dying--she wasn't hallucinating as others said. I never thought so. Rosa had also smiled with pride as she told me about the young black race car driver whose picture hung in Rosa's room--Rosa's late husband Martin. Millie told me about the impact the couple had made for Negro race car drivers in the early 1900's. I asked what music she enjoyed. Soon Rosa was listening to recorded tapes of Mahalia Jackson singing gospel hymns while propped up on lavender bed pillows. She smiled and relaxed a little more as the spiritual balm soothed her. When it seemed that Rosa had reached a level of physical comfort I obtained orders for a 25 mcg Fentanyl Patch explaining to staff the ease of administration as well as its pain relieving properties. I also knew it would help ensure her comfort because of its steady delivery and that doses would not be held because she was asleep and therefore "not in pain". Over the next month, the Fentanyl was increased to 50mcg. A bowel regimen had also been put in place effectively. I was also able to work with the staff in obtaining orders for wound care that diminished the musky sweet odor coming from her breast tumor keeping her worn satin gowns from being stained by cancer that was bringing her closer to death each day. Vanity had been a part of her glamorous professional life and was no less important now. I hope that at least one staff nurse in that facility was able to provide comfort to her next patient and the next using some of the tools I had been given and passed on during my care of Rosa. Coaching and teaching, I believe, is the essence of nursing. Rosa died in less than a year after I joined her on the last weeks of her journey. She was 102. It seemed to be a "good death". Rosa gave me much more than I gave to her. This was true with most of my hospice patients. Life is a gift. Live today--someday *is* today. Life is a journey full of good and bad. It begins and ends with a process both painful and beautiful. To have been a part of this intimate time with Rosa was truly an honor. (names and places changed)
  6. jeastridge

    Hospice: What You Don't Know Can Hurt

    I took a seat on the kitchen chair that the daughter brought in. Pulling it up to the double bed, I tried to get close to my patient, a woman nearing the end of her battle with gastric cancer. She tried to return my smile, and I squeezed her hand as I introduced myself. Her daughter circled around to sit on the bed beside her mom. She opened the conversation by saying, "Mom's been having a pretty rough day today. She is just so weak." As we talked, I heard the bedroom door push open further. I recognized her son, Joe, from our brief introduction outside the house and nodded to him even as his sister continued to tell me about her mother's long battle with cancer. Easing past me, he took a position just behind me, standing against the wall with his arms crossed. He didn't say anything but I could feel some tension enter the room with him. When there was a pause in the conversation, I looked back and invited him to join our conversation by asking the question, "So have you ever had any experiences with hospice?" He answered "No" and didn't elaborate further. I tried again, "I hope I can help you, your sister and your mom understand what hospice is and how we can serve your family." Emotion quavered in his voice as he said, "I'm not sure hospice is what we need." I tried to assess whether or not to continue the conversation outside the room, but I could tell from his sister's exasperated sigh that this was familiar ground; they had fought this battle multiple times and the wounds were still fresh. He spit out the words,"All I know about hospice is that they give people drugs until they die." He stiffened his back against the wall, as if trying to hold the house together with his effort. Consciously relaxing my body language, I turned to face him, offering him my full attention with open posture: palms up, feet on the floor, neutral expression. I reminded myself that he spoke with anger that disguised grief and loss. He spoke words pregnant with the fear of giving up his mother, of letting her down. He told me about the diagnosis six months prior, followed by surgery, then chemo and complications. He said the doctor told them the treatments were no longer effective. His mom softly interjected, "Son, I heard that doctor say I don't have long left." He shook his head. I could tell he felt defeated. In his mind, accepting hospice would mean giving up, giving in. This picture of conflicted emotions presents itself repeatedly in hospice settings. As professionals, we struggle to appropriately address the concerns people have about hospice. Each situation is different and requires sensitivity, creativity and discernment. I paused before stating gently, "Hospice doesn't do anything to shorten life or to prolong life. We simply accompany people on their journeys and work to relieve troubling symptoms that might come up along the way such as pain, shortness of breath, restlessness, anxiety, etc." He turned to face me and I went on to explain as simply as I could some of the basic principles of pain management. Our conversation rang a bell in my spirit that reminded me again of the sacred duty we have as professional hospice nurses with a powerful arsenal of medicines and interventions at our disposal. We have a lot of freedom in practice; we have earned the trust of medical professionals. Patients and families need to have the confidence that they are doing the right thing in how they use medication. A large part of this process is helping families have appropriate education and expectations of what can be accomplished. For example: complete pain control is a goal but sometimes cannot be accomplished without excessive sedation so we must work together to figure out what is important to the patient. Helping all team members understand the plan and its implementation can help to eliminate conflict for even the appearance of over-medication threatens the confidence and trust we all value. Mindful of the import of what I was telling this family, I reinforced the teaching about our 24-hour availability. "Call us any time," I told them. "That is what we are here for. And if you need us to come out, even in the middle of the night, we will do that, too." Being available and willing to respond to families' needs goes to the true heart of hospice nursing. For we cannot simply teach them, check it off, and then expect perfect comprehension. Having that phone number is gold. It helps sooth frazzled nerves, allay mental fatigue and overcome simple ignorance of bodily processes. We took a break from our conversation to notice the cat that jumped up on the bed, purring and settling itself neatly beside the patient's hip. We all laughed a bit and the patient reached over to rub the cat's neck. The daughter spoke next and said, "What I think bothers Joe the most is giving up. We have been trying so hard. We have done everything right. Why isn't it working?" I stopped cleaning my stethoscope and held it quietly in my hand as I told her, "Hospice is not about giving up. It is about changing goals. Signing up for hospice care indicates a change in focus-almost an "about face"-looking toward quality vs. quantity of life. It means that we continue to do plenty, but just different things than we do when pursuing life-extending therapies." She and her brother nodded that they understood and I continued to explain more fully, "While chemo, radiation, transfusions are rarely on the list of considered therapies during hospice care, there are times when they do fit because they help address comfort care needs. Also, at times a few of our patients improve temporarily as the complications associated with treatments ease. Sometimes there appears to be a sense of psychological relief after the decision for hospice is made. We always retain the knowledge that there is an opportunity for a miracle. Being in hospice does that mean that a patient cannot be healed. Occasionally, some patients live on and are discharged by hospice as their condition improves." Joe walked around the bed and as his sister scooted over, he joined her sitting beside his mom. Taking her hand he said, "I just want to be clear that we will only do what mom wants. We don't want you all telling us what to do." His change in posture and position told me that he had really entered our conversation but his words communicated his strong sense of protectiveness toward his mom and a long tradition of fierce independence. I acknowledged his words with a nod and noticed his mom indicating she wanted a drink. I reached over for the sweating glass of ice water that rested on the beDside table, and adjusting the straw, offered her a sip. "You are so right, Joe. The patient and the family remain in control. We are here to serve your mom and your family and to advocate with the other treatment partners. We will try to listen carefully and follow your mom's desires. Each person faces death on their own terms." "Ok. So what if we decide to sign up today and then change our minds?" Joe lobbed his final volley across the bed with force and conviction, as if daring me to answer. I smiled as I answered, "It is possible to revoke hospice. It is important for patients and families to understand that hospice is not always the correct option. Even with the paperwork signed, there is no permanent commitment. You all can change your mind if a new therapy becomes available or if you simply decide you are not ready. "I want to rest now." Their mom dismissed us with a gentle wave of her hand. I quickly finished up my assessment, and we shuffled out toward the kitchen. Leaving last, Joe flipped off the overhead light and blew a kiss into the dim room. Hospice-What-You-Dont-Know-Can-Hurt.pdf
  7. The answer elicits a moment of silence while the questioner grapples with the unexpectedness of the answer I give. A quick mix of surprise and terror crosses the questioner's face, and he or she manages to say, "Oh. How interesting." Usually at this point the conversation gently shifts to safer topics, such as the price of gasoline or the state of the war in Iraq. But sometimes the questioner will flash a quick look of interest and say, "Wow. Isn't it really hard to watch people die all the time?" Yes. But I learn so much from my patients about how to die with dignity and how to fully live the life we are given. Take for example the small town doctor. She was a woman of quiet courage and strength. She devoted her whole life to the population of indigent patients that she mostly served. As a physician she was dependable and competent. She had delivered my child. So when I heard she was to come onto our service, my heart sank to my toes. What could I as a relatively new nurse offer this woman? I had not seen the good doctor since before her cancer had taken hold of her body, and as I drove up to the house, I was very nervous about what I would find. I walked up to a large sliding glass door and peered inside. Lying gaunt and grey on the bed was the patient, face drawn in pain. I did not recognize her. But when she opened her eyes and smiled, I saw the shadow of the person I had known. Her eyes closed again, and I stepped into the house. Her husband was at her side. As I hugged him, I began to cry. "She's really much better," he said, clumsily patting me on the shoulder. Then he began to tell me of the plans they had to keep seeking aggressive treatment for her once she was stronger, though it was painfully evident to me that she would most likely never again get up out of the bed she was currently lying in. Days turned into weeks, and the denial of the patient and the family stood as a fortress between those of us who desperately wanted to help ease the doctor's suffering and the family who so desperately wanted the patient to miraculously return to her former life. Little by little we were allowed to give the morphine she needed, allowed to help clean her body, allowed to hold her hand. But the siege was still raging, and time was running out for the patient to assess the meaning of her life and prepare herself for what lay ahead. Then one day I came into the house and saw the doctor fighting for breath. The rattling in her chest was a harsh, grating sound. But she was alert. I came to her side and she looked at me. She gasped, "I...am....afraid." I gently took her hand and asked, "What are you afraid of? Dying?" She shook her head no. "Not.....dying," she said, "dying....with...suffering." She began to cry. When she composed herself she said "I...thought...of...you....last...night." She then told me of how the night before she had been horribly short of breath and was sure she was going to die then. She said she had never experienced that before herself, but she had treated me for years for severe asthma and had seen me struggle with fighting to breathe, and now she understood how I must have felt. I squeezed her hand and my eyes welled up with tears. I am not sure why, but that moment was a part of the turning point for the patient and the family. Family finally realized that they needed to keep her comfortable. And the patient finally realized that death was near. Several days later the patient passed comfortably, surrounded by those who loved her best. My job as a hospice nurse is to help the patient find the tools he or she needs to live fully until the moment of death. Sometimes patient needs are concrete, such as the need for pharmacological aides or durable medical equipment. But often the things that are needed are not easy to quantify. We all live different lives as human beings. We have individual interests, lifestyles, and needs. However, death is the great equalizer. We all will die, no matter if we are multimillionaire executives, or bag ladies on the street corner. We have no choice about that fact. How we face that fact and what we do with the time we are given is totally up to us. How we live will impact how we die. As a hospice nurse I have learned how to laugh louder, live stronger, and cherish those I love. My patients have taught me that.
  8. Currently, I am a nursing student. But, between experiences in a clinical setting as well as my own personal life, I feel like I want to be a hospice nurse. Does anybody have any advice for me regarding this? How does one go about becoming a certified Palliative care nurse? I currently work as a CNA, and I experienced my first death a few days ago. It was really hard for me, as people insisted on drawing blood and other diagnostic tests on a man who was DNR. For the most part, he was incoherent. But, there were a few times when he was clear as day. He didn't want to be poked and prodded anymore. He just wanted to be left alone. He knew he was dying, and he wanted to go on his own terms. I am not normally a hyper-sensitive person. ( in that way) I don't cry over lost patients. But, this guy...I did cry. Nobody was there for him, other than me. I was there when he took his last breath...and I was the one who saw the lone tear in his eye. I was the person who had to tell his nurse that I thought he was dead. I took it upon myself to perform his post-mortem care. I felt it was my responsibility to do so. I was the person who he spent the last hours of his life with. I was the last person he laid eyes on, the last person he talked to, the last person to talk to him. I had to be the one to get him cleaned up and ready. Unfortunately, as the lone CA on shift, that meant neglecting vitals on some other patients. God forbid the nurses take a couple of readings. ......... Not to mention that they told me not to bother. Somebody had to sit with this poor soul. God knows they weren't going to bother. This guy died in pain. He spent hours bleeding out. He was in so much pain. I was NOT going to leave him alone. I knew he was dying, he knew he was dying. I could not, in good conscience, leave him alone to die by himself. My heart made me sit beside him and hold his hand. My heart made me clean him up to the best of my ability. It wasn't easy. I work on a psych floor for elderly patients. Deaths are not a normal occurrence on our floor. This experience has been a profound wake up call for me. He should not have been in so much pain. No one should have been drawing blood. That man should have been allowed to die with dignity, on his own terms. I wish I could tell his kids that he was not alone when he passed. I was there with him. I was holding his hand. I know I am just a lowly CA, but I think his kids would take comfort knowing that someone was there with him when he took his last breath. That he wasn't alone. That someone who cared about him was there with him to the end. I know it's not my place to say such things.
  9. Family members of patients in the intensive care unit are an intricate piece in the end of life decision making process. However, families are not always as informed or involved as they would like to be. There are a multitude of articles relating family satisfaction and effective communication for high quality end of life care and yet, families are often left with feelings of guilt and unanswered questions. Family involvement in communication, decision making, and cultural variations are discussed. Common barriers noted in the research will be brought to light in order to create an intensive care culture that assesses family needs and supports families as a key component in high quality, family-centered, end of life care. The purpose of this review is to identify areas for improvement as well as barriers to high quality end-of-life (EOL) care and the inclusion of families as an integral part of the decision making team. An important aspect to evaluating quality EOL care is whether the patient's family was satisfied with the care their loved one received (Brazil, K., Cupido, C., Taniguchi, A., Howard, M., Akhtar-Danesh, N., & Frolic, A., 2013). This is an important topic for consideration because families often cite communication deficiencies as a source of dissatisfaction with care provided in the hospital setting (Downey, Engelberg, Shannon, & Curtis, 2006). Additionally, approximately 2.4 million Americans die each year, with one in five deaths occurring during, or shortly after, a stay in the Intensive Care Unit (ICU) (Wiegand, Grant, & Cheon, 2013). The number of deaths in the ICU is likely to rise as the population ages. The Cumulative Index to Nursing and Allied Health Literature (CINAHL) was searched using dates 2003 - 2013, and keywords: family, intensive care, critical care, end of life, and communication. CommunicationThe landmark, Study to Understand Prognoses and Preferences for Outcome and Risks of Treatment (SUPPORT), done in 1995, heightened interest in the need to improve hospital care for dying patients (Ahrens, Yancey, & Kollef, 2003; Billings, 2011; Brazil, et al., 2013; Boyle, Miller, & Forbes-Thompson, 2005; Norton, Hogan, Holloway, et al., 2007; Tschann, Kaufman, & Micco, 2003). SUPPORT identified poor communication between physicians and patients on preferences for care, poor pain and symptom management, and the continuation of aggressive therapy without sufficient attention to palliation in the face of almost certain death, as shortcomings in hospital care (Brazil, et al., 2013). Communication is a key element to providing high quality EOL care. Despite widespread acceptance that communication among patients, families, and the health care team is important to providing high quality care, research suggests that communication about EOL care is often limited (Ahrens, Yancey, & Kollef, 2003; Billings, 2011; Brazil, et al., 2013; Cherlin, et al., 2005; Jacobowski, Girard, Mulder, & Ely, 2010; Kjerulf, Regehr, Popova, & Baker, 2005; Norton,et. al., 2007; Wiegand, Grant, & Cheon, 2013). Family MeetingsOne method of facilitating communication among families and clinicians is holding family meetings early in the patient's admission to the ICU. As evidenced by Billings, 2011, family meetings in EOL care, when held proactively, within 48-72 hours of admission to the ICU, have been shown effective for improving family and staff satisfaction and reduced resource utilization along with decreased length of ICU stay. The family meeting provides the health care team with an opportunity to assess the family's knowledge, provide a consistent picture to the family, and plan for ongoing communication (Billings, 2011; Wiegand, Grant, & Cheon, 2013). Research shows that families are more satisfied with meetings in the ICU when they have spent more time talking and the physician talked less (Billings, 2011; Norton, et. al., 2007). Early family meetings can provide an opportunity for the family members to talk about their fears of death and how they are coping with it (Billings, 2011). Family meetings help the family begin to prepare for a possible poor outcome and start the grieving process (Wiegand, Grant, & Cheon, 2013). Palliative Care ConsultsSimilar results were noted regarding early palliative care consults as with the initiation of early family meetings. According to Norton, et. al., 2007, patients who had been identified as having a high risk for death received an automatic palliative care consult on admission to the ICU, in order to provide the ICU team with recommendations for treating symptoms and creating plans of care. This resulted in decreased length of stay in the ICU, and had no effect on the mortality of the intervention group versus the usual care group (Norton, et. al., 2007). Family RoundsTwo of the studies reviewed, Ahrens, Yancey, & Kollef, 2003; Jacobowski, Girard, Mulder, & Ely, 2010, attempted an interdisciplinary team approach to meeting the family's need for communication. In the first study, families attended daily rounds with the medical team discussing the plan of care. There was improvement of satisfaction with communication but not overall satisfaction with care provided (Jacobowski, Girard, Mulder, & Ely, 2010). The second study utilized a team of only a physician and a clinical nurse specialist, who would round together daily on patients determined to be at high risk for death. Families were provided with the same information as the first study, medical updates and a plan of care for the patients, however, the results were different. There was increased satisfaction as well as decreased length of ICU, hospital stay and a lower incidence of cost (Ahrens, Yancey, & Kollef, 2003; Boyle, Miller, & Forbes-Thompson, 2005). Further research as to the families' comprehension and knowledge during rounds in the first study, as well as whether another nurse with skills in communication could replicate the results of the second study remains to be done. Family PerceptionsIn the research put forth by Kjerulf, Regehr, Popova, & Baker, 2005, in a Canadian study, family members who perceived that physicians did not spend enough time answering the family's questions and were dissatisfied with access to information, and thought their family member's pain was not controlled adequately. Results of a Norwegian study by Lind, Nortvedt, Lorem, & Hevroy, 2012, showed that if the family was not present for health care discussions with the patient, they had the perception of exclusion, and felt they were unable to be sure if the patient was informed properly. Both of these studies show that in order for the family to have a sense of trust of the health care team they need to be updated on changes in condition as well as the plan of care for the patient. Perception is subjective and must, therefore, be researched further to test the generalizability of these studies. As evidenced by the above research, information sharing and effective communication can be associated with increased family satisfaction with EOL care provided, decreased length of stay in ICU, and a decrease in resource utilization. Decision MakingHaving a family member in the ICU has been shown to be extremely stressful for families. Only 5% of ICU patients are able to participate in the decision making process (Wiegand, Grant, & Cheon, 2013), which puts the burden of decision making onto the family. Family centered care is essential to providing high quality EOL care in the ICU (Institute for Patient- and Family-Centered Care, 2010). The International Consensus Conference in Critical Care, the American Thoracic Society, the American College of Chest Physicians, and the Society of Critical Care Medicine all recommend a shared decision model where consensus is sought between the patient's values and the best medical opinion of the multidisciplinary team (Wiegand, Grant, & Cheon, 2013). It remains evident in the literature that there is still need for improvement on including family members in the care of the patient in the ICU. Informal Family RolesRecognizing and understanding the roles that family members play within the family unit during a critical decision making time, is important to facilitate more effective communication and consensus among family members (Quinn, et al., 2012). In the study done by Quinn, et al., 2012, certain informal roles were identified during family meetings where these complex roles emerge. These roles were identified early on admission to the ICU, and resulted in reduction of conflict among family and clinicians. The process of making EOL decisions is strongly influenced by family dynamics and often occurs within a decision making framework (Wiegand, Grant, & Cheon, 2013). In order to understand and support the process of effective family decision making, the health care team must understand the informal family roles. Lack of InclusionAnother factor noted in the research, as to why families are dissatisfied with care provided, is a lack of participation in the patient's care (Lind, Nortvedt, Lorem, & Hevroy, 2012; Wiegand, Grant, & Cheon, 2013). Some families describe wanting to be involved in the decision making process, yet they are not always included to the level they perceive they should be (Wiegand, Grant, & Cheon, 2013). This correlates to Lind, Nortvedt, Lorem, & Hevroy, 2012 findings that the burden felt by families is a result of the lack of inclusion, insufficient information, and openness from the health care team. Cultural CompetenceThe cultural variations of a particular group of people determine how they make sense of life and death (Bullock, 2011). Knowledge and awareness of cultural values, attitudes, and behaviors can assist the health care team in avoiding stereotypes and biases, while creating positive interactions with patients, which leads to increased satisfaction (Bullock, 2011). This area of cultural competence, specifically related to EOL care, needs more research regarding the impact of cultural competence on patient and family outcomes. BarriersCommon themes emerged from the literature regarding possible barriers to family satisfaction and the provision of high quality EOL care in the ICU. Physical EnvironmentThe ICU environment is mainly created for utilizing high-tech medical equipment and is not designed for holistic family-centered care (Fridh, Forsberg, & Bergbom, 2007). The presence of machines, tubes, wires, and the constant sound of alarms can be an impediment which families are faced with in the ICU (Fridh, Forsberg, & Bergbom, 2007). Further research could be done for a more family-centered and home-like hospital environment, much like the changes that most hospitals have made for childbirth areas (Fridh, Forsberg, & Bergbom, 2007). Lack of TrainingMany nurses and physicians have difficulty with EOL discussions because they are uncomfortable with death and lack the communication skills to facilitate an effective EOL conversation. A study done by Friedenberg, Levy, Ross, & Evans, 2012, compared perceived barriers to EOL care by level and training of residents, fellows, and attending physicians. This study demonstrated that appropriate training for EOL care is lacking. Almost 40% of respondents reported inadequate clinician training in EOL communication as a barrier to providing high quality EOL care. It is essential for health care teams to examine and understand their own discomfort with death (Boyle, Miller, & Forbes-Thompson, 2005). Further research on communication skills training programs, related to patient outcomes, should be done. Ineffective CommunicationEffective communication is a skill that requires training and practice in the same way any technical skill would. In a study done by Cherlin, et al., 2005, it was found that differences between what physicians think they are communicating and what family members hear exist. This type of ineffective communication about EOL issues could result from the physician's lack of discussion as well as the family's ambivalence about what they wanted to know, as well as, difficulty comprehending and accepting "bad news" (Cherlin, et al., 2005). Another study suggests, patient presence effects the discussion during family meetings. When patients were present there was decreased communication concerning prognosis, and what symptoms dying patients might experience (Dev, et al., 2013). Further strategies for optimal physician-family communication should be assessed. ConclusionThe consequences of unmet communication needs for families of ICU patients include dissatisfaction, lack of understanding, unmet goals of care, increased feelings of burden, lack of trust, and conflict with the health care team (Boyle, Miller, & Forbes-Thompson, 2005). The research indicates that addressing communication problems between the health care team and patient families may improve the overall satisfaction with end-of-life care. Having some insight of informal roles that emerge in families during stressful situations is helpful. By including family members in the decision making process they having a sense of inclusion, which the literature pointed at as an area of importance for high quality end-of-life care. The research reviewed areas for improvement as well as future research possibilities in relation to increasing family satisfaction and patient outcomes. Providing family-centered care is important when caring for patients in the ICU. Preventing distress and promoting comfort during the dying process is a final gift the health care team can give to patients. Despite their loss, families may leave the ICU with positive memories of care and comfort if family needs are adequately addressed as outlined in the research. references.txt

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