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  1. 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.
  2. Hospice: A New Direction Now I wasn't just stepping back into a direct care role on "the floor" of Med/Surg. No, I took a role as a field nurse in an area considered taboo by even the best nurses. Most nurses cringe when hearing that name with the usual remark, "I could never work there. It takes a special person to work in that area." Yes, I accepted the job and began working the first week of May 2007 in none other than Hospice. I chose Hospice because it really was nothing like what I had worked in the past. I thought it would get me out of the hospital walls and the headache of management. I had worked in community health nursing in the past an enjoyed the autonomy it allowed. The time for private thought and traveling farther than the bathroom or the cafeteria was oddly appealing to me. It even seemed weird to say but I thought after working in management I owed it back to the direct care nurse to put my hands to the grindstone, a philosophy I appreciated as a floor nurse and held myself to as the coordinator. I looked forward to giving of myself to my patients. What I have gotten from my patients, however, has left me often feeling like the receiver instead of the giver. Hospice: A Never-Ending Experience In a nutshell, the Hospice philosophy is to provide the patient with the best quality of life for as long as the patient is alive. That sentence doesn't give Hospice justice, but this article isn't about what we as nurses can do for the patient. This article is about what the nurse takes away from the experience. Call me the eternal optimist, but in a world where gray clouds loom and joy gets robbed with every heartbeat, I believe God provides a silver lining. In the realm of a dying person, there are always treasures to uncover. I never imagined how a job taking care of others in their greatest time of need could give back so much. Sure, every day I see a patient and I am reminded that my problems are not life ending. Every moment helping them when they deal with pain or breathing difficulty I thank God my problems are life changing, not life-threatening. Every time a patient dies I know I am blessed to be alive. Patients Share The Greatest Wisdom I am amazed when out of the crackling voice of a dying patient comes words of clarity, truth, and strength. When we are not treating, comforting, and answering questions; when our mouths are shut and our ears are open, it is the patient who usually has the greatest wisdom to share. In providing the best quality of life to a dying person, it is that person who has spoken so much into my life. I find myself driving away from the home speechless at the boldness and profound words that pour out of them. In eight months I am honored that my life has been blessed by my patients. I honor the wisdom, knowledge, and strength of a man, woman, or child who faces the greatest unknown and has made peace with their life. They get it. They understand it. If only we, the non-terminally ill nurse, social worker, therapist, and the doctor could learn to live with that passion and boldness. If only we could learn to live like we were dying. It is that knowledge and wisdom when we listen, that is worth dying for. T.J. Bristle RN BSN CLNC
  3. 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
  4. 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.
  5. vwevans

    Hospice Career

    In the last year however, I did find my niche. Actually, it found me. You see, I believe in God and His Hand in my life. He actually opened a door for me that I would never have opened myself. In fact, I was faced with the door before, and I did not open it. My new found home in nursing is Hospice. There is a local, nonprofit Hospice agency in the small town I live in. Several times throughout my nursing career I would go by and pick up an application, but never completed it. Then one day last April, I was leaving the hospital, after sitting with my father-in-law for several months while he was a patient. Going down the stairs, the door opened in the hall at a small office where just a few nursing staff worked. My curiosity got the best of me, so I stopped and questioned them as to just what they did. The staff explained they worked for Hospice and that this was a small inpatient unit. I had no real idea of what Hospice was or what it meant. But I thought, I might be able to do this! As I left the building, I was met by someone I worked with years earlier and not aware of whom she was, we talked and when she asked me what I was doing, I told her I was on my way to apply for a job at this Inpatient Hospice facility. I still was not aware that the person I was talking to was the Executive Director of the Hospice Agency. Within days I found myself being hired as the Director of the Inpatient Facility. During my interview with the Clinical Director, the last thing I told her was that I did not like working with dead people. She of course was taken aback and stated that Hospice was in the business of dealing with death and dying and that the nurse was the person who pronounced the deceased. I explained to her that in all my years of nursing I had never taken care of a deceased body by doing postmortem care. I always let the nurse aid do the care. I didn't even want to go back into the deceased room when they had been pronounced. To my surprise, I have come to view death as a part of living. Giving care to someone who is in the last stages of their lives has become one of my greatest blessings. To be able to share this most intimate time in one's life and the life of the family has become viewed, by me, as a privilege. To be there, perhaps holding a dying patients' hand or their love ones' hand, I feel is the last thing I can do for this person as they leave this life. Any fear or anxiety I may have had with death and dying has been totally alleviated. I don't even think of my position as being a job, but more so a ministry. Hospice nursing is truly holistic in nature. We have a team of professionals who work closely together, trust each other, and value each others' expertise and opinions. Our team consists of nurse, nurse aid, social worker, chaplain, physician, bereavement coordinator, as well as the most important people, the patient and family. Each person is listened to, helps plan patient/family care, and come together when comfort and encouragement and just listening is needed. You may think that working in Hospice will "weaken" your nursing skills. This is so far from the truth. Not only are our patients facing the end of life, but they also have many medical and physical conditions that continue to require intense nursing assessment, planning, care, and evaluation...just like any other nursing area of care. I have found that teaching is one of the most critical aspects of the nursing care. Teaching on dying and the changes to be expected to family is one of the most challenging areas. Families worry about patients being in pain, of starving and dehydrating when they begin to refuse nourishment. Teaching must be done quickly, repeated frequently, and done on levels that families are ready to hear and deal with. If you want to really know that you made a difference in someone's life at the end of the day, that what you did mattered, that your very presence made a difference, then I challenge you to give Hospice a career chance.
  6. rmw44

    The Power of Ethical Wills

    Using Words That Heal The document he held in his hand read like a lawyer had charged him for more than time and effort. It was the beginning of healing and such benefits would be priceless. Ethical wishes made their way into the legal swamp of bequeathing and here-to-fore's. His worldly possessions, though few, were distributed according to his wishes. With caution and inner searching, words of "why" certain choices and decisions were made were clarified. A man's last will and testament also became his ethical will by injecting small doses of his reasons for certain decisions. He was healed of an infection that had rendered him angry prior to releasing his frustration in a document that would be witnessed and acknowledged after his death. Ethical wills take many forms yet can be the conduit to resolution and completion in our lives and the lives of our patients. Patients and families come to hospice when the end is usually much nearer than the six month allotment of supposed time and therefore ethical wills are rarely addressed. Nurses are in critical mode, hurriedly addressing pain and symptoms in an effort to begin working to alleviate emotional pain. Social workers are ecstatic to have actual counseling time but are most likely struggling to make the initial visit or complete the loose ends of other advanced directives and wishes not yet addressed. The chaplain and volunteers are often requested to not visit until the need is anything but writing an ethical will. The spiritual pain is often lost in silence and never gains ground in being expressed to family and friends. What is an ethical will? Of biblical origin, the ethical will was once an assignment of blessings and statements from the elder fathers to their sons. Today we see these wills in a disguise of journaling and personal notes. There is no appropriate or designated format for this type of will. The contents are magical in their powers to heal and the magic is not formed in following specific criteria for form. There can always be healing - even when experiencing the end of life. A piece of paper, a notebook, or a beautiful handmade leather journal may all serve the same purpose. The words are written to explain the reason for choices made, the expectations of life and family, ideas, forgiveness, explanations. No formal will and testament gives an ear to the discomforts of the soul, except the ethical will. As an agency or an individual, you can begin the healing of your patients by encouraging the documentation of those thoughts and feelings that have surfaced with the intrusion of death. The ethical will may take the form of a terminally ill mother writing her blessings and wishes in a journal to leave for her daughter, a young man who wants his siblings to understand his heart and the reasons for actions he has taken as the obstacle of death stands fast in his way, or the couple who have no one but each other that leaves their legacy of love in writing for someone to acknowledge or witness. It has been said that all any of us really need are witnesses. We need a witness that our life holds great meaning and purpose; a witness that we have loved and are loved; a witness to our life. As members of the hospice community or any health care programs it is an honor to be the witness that our patients need in this new realm of spiritual discovery. If it is a hospice patient or ourselves contemplating the presentation of an ethical will, some tried and true tips will help move the words from heart to hand to paper with the impact and magic that the compilation evokes. Just start writing. I often suggest that in writing our life stories it is best to just designate a few minutes daily to writing anything. Let the words flow and then bring them together like a soup. All the ingredients are gathered and the final product is savored given that the brew has time to cook. Unlike the life story journals, the final product should be a stepping-stone to resolution of an incomplete section of our journey. The finality is certain but the journey is not. Make the steps toward completion of information an adventure in discovering the deepest thoughts that have anchored our intentions and actions. Find stillness. Absolute quiet and serenity will help thoughts bubble up and dissipate. The remaining pieces are slow to rise but will as we practice stillness. Those remnants of thought that do not disappear are the ones to address and to nurture. These are the engines that have given us motivation and fear, desire and dread, dreams and complacency. When we discover or our patients discover these remnants, the dissection of their meaning bring serenity and power. Be grateful, find moments of happiness, question why and then document the discovery and understanding. These are emotions developed into words that will be read by future generations or possibly by only one person. The moment we arrive at our reasons for being, we become our own witness. Robin Watts is a hospice care consultant with Regency Hospice located in the serene mountain vistas of Northeast Georgia.
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