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  1. The elderly patient stared back at me with watery, vacant eyes while I leaned over to listen to her lungs and complete my assessment. Her lungs were clear and her heart rate remained steady and slow. She reached up to pull at her nasal cannula and her daughter quickly replaced it, saying, "Now, momma, leave that be. It's your oxygen. It's gonna help you." I sat down near the bedside with the daughter and granddaughter and we talked about the patient's course: she had ongoing dementia and recently suffered a fall and a broken hip. After surgery, she had a stroke that affected her ability to swallow and the family was faithful to follow her wishes not to have a feeding tube. Because of some pain from her hip, and some restlessness, we had admitted her to inpatient hospice care for symptom management. Now, two days later, her pain was well controlled and the patient was resting comfortably with no further need for interventions that could only be provided in a hospital/hospice house setting-care often referred to as general inpatient care or GIP. I talked with the family about what had happened over the previous two days: her pain was better. Yes, they agreed. And she was calmer and appeared more comfortable. Yes, they saw that, too. I also pointed out that while she continued to take the occasional bite of ice cream or applesauce, she was not able to take in enough calories to survive over the long term or to be able to go through rehabilitative care. As gently as I could, I told the family she would need to be discharged to home or to a nursing home setting; either place, hospice would come and take care of her there. Although we had covered this thoroughly during the hospice admission process, it seemed to be new news to the family at this stressful time. "What are you talking about? You can't make her go home! We can't take care of her! I have a bad back, and I can't pay caregivers. No! You cannot send her home." She crossed her arms and leaned back in the chair, her face set and angry. I listened and made a conscious effort to open my hands, palms up, while working to keep my facial expression neutral. I asked her a few questions about the home situation, looking for clarification. She raised her voice and became more agitated. Her daughter, a young woman probably in her 20's, put her hand on her mother's arm, obviously trying to calm her down. The daughter got up and stormed out of the room. The daughter raised her eyebrows and shrugged as if to say, "What do you do about that?" Hospice's goal is to primarily take care of people in the home. The team is set up so that the nurses, aids, social workers and chaplains, visit and care for patients in their familiar home setting. Sometimes the "home" is a nursing home or an assisted living or even a family member's home. Wherever "home" is, hospice will come to them there. The hospice services in and of themselves are almost always covered by insurance and they are covered 100% by Medicare. But the "home" itself, is private pay. So if the patient needs to be in a nursing home, hospice comes there to care for them, but they are responsible for the room and board at the facility. While this makes good sense when we are cool and rational, it can come as the final straw for an overwhelmed family who has used up all their emotional, physical and financial resources caring for a loved one who has been ill over a period of time. People generally don't understand or don't remember that this is the place where those who can afford it employ long term care insurance. For others, it can be a time of real financial hardship, taking the last of meager resources. For those who are indigent, Medicaid will often be involved in helping cover the nursing home expenses. During these tense times, the questions can come fast and furious"What do you mean you don't pay for the nursing home?""What do you mean my loved one has to go home?""What do you mean she is stable? She is dying!"In hospice, our job is to listen, to be able to show some empathy and to help the family come to the best solution for them. I left the room to allow the family some time and space. After discussing the situation with my managers, I waited until a social worker arrived and we went back in to talk with the family again. After more conversation, we were able to reach a solution that seemed to help the family with what they needed the most: time and rest. We kept the patient in the hospital for a few days of respite, allowing the family time to process, recovery physically, and make arrangements to care for her well at home with a rotation of extended family members. By the end of the day, there were hugs and comforting words all around as the family resolved to go home for a bit and get some "real sleep," but most importantly, the patient was resting, comfortable and appearing to be at peace. What has been your experience with GIP/respite/home care and the interface between these three? Do you have any insights on how to make these transitions easier for everyone?
  2. She Was Waiting for an Angel to Guide Her Her name was Norma and she was from Rhode Island. It was a hot July day when she came to spend her last days in the hospice unit. I remember so vividly the machines that she was hooked up to, the machines that would not guarantee a longer life, just enough time for her loved ones to gather and say their final goodbyes. She was a beautiful woman and only sixty eight years young. I continuously thought why does she have to leave this world? Why her? I am not ready for this! There was a nurse on duty that day and when she entered the room I felt an overwhelming peace come over me. She had strawberry blonde hair and a pale complexion. She looked at me and smiled as she walked over to the bed where Norma would spend her final hours. I instinctively knew this nurse had the compassion that Norma needed and deserved. As I approached her, I felt as if this stranger would help me through the most difficult time of my life. How could a stranger be so powerful? In that room, every moment is precious, every detail is important and every sound is amplified. On this day, the morphine drip was mesmerizing to the point that for a moment it was as if it was in sync with the beating of my heart. I soon realized every drop of morphine that fell was like a countdown to the last breaths that she would take. I looked up and there she was, the strawberry blonde haired nurse. She was just smiling at me, not a happy smile but a very comforting smile. I needn't speak a word to her because my thoughts she already understood. She quietly said it was time for her to re-position Norma. I told her that I would gladly help her but you see she couldn't have me there. Not because of rules in the hospital but because she wanted to preserve my memories. She did not want me to see what would happen. She cared about how I would forever visualize such event should I have stayed. As I walked out of the room I found myself counting the beeps on the monitor, one, two, three, four, five... Scared but appreciative, I walked out of the room and went down the hall until the beeping faded and then stopped as if it was never heard. As I sat and waited, other family members had arrived. I told them we had to wait outside the room for a little while. I didn't tell anyone how the nurse had spared my memories, or how she comforted me beyond words; I wanted that to be mine. After what seemed like hours, we were allowed back into the room and when I entered I felt something was different. Norma looked so peaceful and comfortable. An overwhelming feeling of sadness came over me. The nurse looked at me in such a way that I knew it was time to prepare to say goodbye. I did not want to! I was not ready for this; she just got comfortable again she is fine, but she was not fine. Cyanosis started at her toes and eventually up her legs and so on. The nurse told me that this is normal symptomatic behavior for a hospice patient in her condition. My focus was now on this because I knew that the more observable color, the sooner her last breath would be taken. Time was of the essence. We all gathered around her bedside and sang a song that she loved, a song that she wrote for all of us. The moment the last word was sung, her last breath was taken at 7:24 p.m. I relive this moment as if it were yesterday, I see the room, the bed, hear the noises from the machines, the crying and even the silence was deafening. Everything is so vividly painful in my mind, all the memories that I had would be all that I had for the rest of my life. I would never hug her, talk with her or laugh with her again. It was over and it was final. But she, the strawberry blonde headed nurse is the most vivid memory of all. Not her face but her compassion, her empathy and most of all her giving Norma, my beloved mother, the dignity and respect that she so deserved during her last hours of her precious life. My mother went to a hospice unit on a hot July day when she was sixty eight years young. She took the most important journey in her life. She waited for the moment when an angel would come and guide her home. She was respected, loved, cared for and her dignity was preserved by the hands of one nurse. Who is she? I do not know. I do not remember her name, yet she is not faceless; I will remember her face for the rest of my life and I will never forget her. A nurse is defined as a person trained to care for the sick, to give medical attention and prevent illness and injury. To me, nursing goes beyond that. God Bless all nurses everywhere; you never know what an impact you will make in the lives of others. Thank you for your service. Lori Modert
  3. Palliative wound care is much more than exudate and odor management. Maintaining optimal function and mobility is an important part of symptom control and supportive care as well. Optimize Function and Mobility To optimize function and mobility in persons with nonhealing wounds, interventions should be tailored to the needs, comfort level, and desires of the individual patient. The overarching goal is to maintain as much function and independence for as long as possible to improve quality of life. Pain management should be adjusted to the amount and level of activity. Pain causes limited motion, restricted social interaction, and reduced capacity to conduct normal activities of daily living, such as dressing, bathing, and using the toilet. Pressure Redistribution Palliative care patients who are bedridden need pressure redistribution beds with support surfaces to help eliminate pressure, shear friction, and maceration. These devices reduce pressure by conforming to the contours of the body to redistribute the pressure over a larger surface. Group 1 pressure redistribution devices include pressure pads and mattress overlays composed of foam, gel, or water products, and the least expensive air mattresses. Group 2 devices include powered pressure reducing mattresses and mattress overlays, therapy beds, and low air loss mattresses to manage the heat and humidity of the skin. The only group 3 device is the clinitron air fluidized bed, where warm filtered air is circulated through silicone coated ceramic beads in the mattress, to evenly distribute an individual's body weight over a large surface. Infection Prophylaxis Infection prophylaxis is another important approach to palliative care of non-healing wounds, as it helps to control symptoms and prevent complications. Non-healing wounds, especially open ones, have a potential for serious wound infections that can extend to the underlying tissue and bone, where infectious organisms can enter the bloodstream with spread of infection throughout the body. Infection can make the wound, as well as the distressing symptoms associated with the wound, much worse. Signs of Infection Classic signs of wound infection are redness, swelling, warmth, extreme tenderness, increased exudate, purulent drainage, contact bleeding, odor, and fever or chills. A variety of different management strategies may be employed, since the development of a wound infection in a debilitated patient depends on the complex interplay of many factors. Treatment options include diagnostic testing to guide the choice of antimicrobials, antimicrobial topical products, antibiotics, wound bed cleansing, and surgical debridement of necrotic tissue. Pain Pain is a characteristic feature of nonhealing wounds and advanced life-limiting conditions. The constant pain can take a toll on quality of life, transforming the time that remains into a miserable existence. Effective pain management, therefore, is paramount for patients with nonhealing wounds at end-of-life. Ways to alleviate wound-associated pain include medicating the patient before dressing changes, moistening dry dressings prior to removal, the liberal use of opioid medications and topical anesthetics such as lidocaine, refrigerating dressings before application, avoiding the use or overuse of tape, and the use of wound gel products such as collagen hydrogel to lessen trauma to the wound bed. Palliative wound care places great emphasis on symptom management. Maintaining optimal function and mobility, managing wound infections, and controlling pain are all important approaches to help patients with nonhealing wounds and terminal conditions achieve the highest possible quality of life.
  4. jeastridge

    Living Better with Hospice

    "I am having a good day today!" My patient's greeting was a warm welcome as we started our visit. She was on the front porch, in her wheelchair, oxygen tubing snaking discretely behind her, the compressor's noise muffled and distant. The sunshine was warm and the blue sky was enough to lift any sagging spirits. Her caregiver excused herself and went on inside. Stella, the patient, went on to tell me that since starting our new regimen for treating her dyspnea, she experienced less "smothering" and felt a little more energy, especially in the morning. "Hospice has been good for me," she went on. "Who would have thought?" she gave me a sweet sideways smile, her leathered hand reaching out for mine as I sat in the rocker beside her chair. We went on to talk about her medication regimen, her current status, but along with that we discussed her plans for her beloved cat, Misty, and for her home of 50 years. Toward the end of the visit, I offered to have our chaplain stop back by in the next few days and she readily agreed. "That would be good. She is so friendly, and I can say anything and she never seems shocked!" We laughed together as I collected my things and zipped up my computer bag. A number of recent studies have shown positive outcomes for patients who enroll in hospice and for patients who choose palliative care options. "Among the patient populations studied, the mean survival was 29 days longer for hospice patients than for non-hospice patients. In other words, patients who chose hospice care lived an average of one month longer than similar patients who did not choose hospice care." (Journal of Pain and Symptom Management, 3/2007) While the story above is an especially positive one that highlights the benefits of hospice, there is great overall satisfaction in knowing that our work as hospice nurses can produce life-changing results, especially as relates to helping people find good closure. In an ideal hospice organization, the team works in concert to help with symptom management and to promote true honesty in person-to-person connection. What are some possible reasons that good hospice care prolongs life? Less fatigue from treatment routines Treatment for chronic conditions can result in a parade of doctor visits and tests-so much so that everyone involved begins to feel the exhaustion set in. At hospice admission, we talk about bringing medical care to the patient and no longer having to keep routine appointments, or go for blood tests and scans. Rarely do patients and families object. Most are very happy to see that cumbersome part of their routines left by the wayside. The energy expended in getting to appointments is no small matter. For the chronically ill, a single doctor's visit often wipes out their energy reserves for the day, leaving little for the things that bring them true joy. Medication management expertise Hospice care can help bring "wholeness" back to the end of life. By becoming a liaison between the patient and the physician, the hospice team stands to take away a whole list of worries from the patient's plate. Getting those refills, helping to decide when to "up" the medication, improving patient/doctor communication all these services help take a burden off the hospice patient. Acknowledging the elephant in the room NOT talking about death can be a great burden to the patient. As the care team delicately dances around the subject, the patient may begin to feel like a failure for not getting well, a misplaced feeling a guilt laying on their weakened shoulders like a heavy, wet blanket. The patient, the family and sometimes the care team, so desperately want to succeed in defeating disease that they end up causing "dis-ease" through the treatment process. When the patient elects hospice, death normally becomes part of the initial conversation and plans for helping with end-of-life closure begin. The relief can be subtle, slowly allowing for better sleep and less anxiety. It can also be accompanied by floods of tears and emotional release as patients and caregivers change gears. Feeding the spirit One of the great parts of hospice is the freedom to talk with one another about spiritual matters-about the things that are truly important to the patient. Whether or not the patient and their family practice a particular religion, this is a time in life where people often want to express themselves on spiritual matters, when they want to re-connect with old friends and long-lost family, when they want to meditate and to pray- or be prayed for. "We are spiritual beings having a physical experience," (source unknown) is a phrase that resonates during the time approaching death. By having a terminal diagnosis, the patient becomes a subject matter expert, an often unaccustomed position that has the potential to be liberating. As nurses, we can choose to become listeners and learners, allowing our patients to share their hearts with us, if they wish. I waved good-bye to Stella as her caregiver pushed the wheelchair inside, carefully maneuvering around the oxygen tubing, working to get her charge inside and back to bed for a long nap. While we might not necessarily extend Stella's life, I had the strong feeling that we were doing much to make her remaining days better. And that was worth celebrating!
  5. I recently spent 45 minutes talking about death, and hospice, with my husband's sister in Maryland. Her mother -a delightfully quirky 91-year-old activist who still spends her days faxing her congressmen-just signed on with the local hospice. I'm a hospice nurse, by far the most rewarding work I've done in 35 years in the profession. I'm doing my best to help them navigate these new waters. Why is hospice nursing challenging? I understand so well what she's going through-teetering on that invisible line between wanting to cheer someone on to keep trying, and allowing them to decide that it's OK to stop fighting what is inevitable for all of us. Esther has, by my estimation, months, maybe a year left in her increasingly frail body. Although she's still very sharp, mentally, she forgets things more, has to stop more often to catch her breath, and can't really muster any enthusiasm for exercising with her walker. She spends more time in bed or on the couch, wakes up later, goes to bed earlier. I see the familiar signs of someone looking beyond this mortal coil. Considering the quality of those months is, to my mind, far more important than wringing out more of them by pushing her to eat more and take more walks. There comes a time with an aging parent when you have to stop trying to make things better, and decide to just love them, respect their wishes, and be present. I think that time has come with Esther. At this stage, it's important to distinguish between what COULD be done and what SHOULD be done. Still, it's hard. Damned hard. As I remember well with my own Dad, it's easy to decide in an abstract way that you don't want to prolong life unnaturally, to trade quality for quantity. Yet, when my rapidly declining father broke his hip, I was heartbroken to hear that he decided not to have surgery (in retrospect, this would have been a miserable experience he might not have survived). I wanted to let him go peacefully, without a lot of high-tech, dehumanizing interventions. I just didn't want to do it YET. No matter how clear we are, in a theoretical way, about wanting a peaceful, dignified end for our loved ones, we're never ready for this moment to be the last we have with them. That pain is something we sign on for when we let ourselves love someone or something impermanent. Which is, alas, everyone and everything. Loving the impermanent is one of the necessary pains included in this beautiful, untidy package we call life; I've decided to learn to live with it. The alternative, to harden ourselves and not get "too attached" (a concept that has taken much of the heart out of medicine, in my opinion) is not one I care for. This is what I love most about working for Hospice-we get attached to, and often fall in love with, our patients; it's a given. And although I'm aware of how much we bring to patients and families we care for-comfort, supplies, clarification of what's important, understanding of what they're going through and what's ahead-I always feel I've received more than I give. It's an honor to be with people who are facing their own mortality. Somehow frivolous concerns seem ... frivolous; the specter of death has a way of distilling what's important in life. And being reminded of our universal mortality reminds me not to squander this life I have on resentments, or worries, or acquiring more things. I'm more aware of the beauty, and the fragility, of the world and our relationships. So, I answered the questions I hear so often. Joining hospice does not generally cause people to give up and die-often the support we give causes them to rally and live longer and more comfortably; sometimes they even "graduate." Pain medicines, used appropriately, do not cause addiction or hasten death, but the need for them often coincides with a decline that has already begun to accelerate; ideally medications relieve pain and air hunger in patients' last months, even sometimes increasing activity. And yes, there are always gray areas: How long is it safe to leave her alone? How much should we push her to eat and exercise? As always, I suggested she answer these questions from her best understanding of, and respect for, Esther's wishes, and by exploring them with the hospice staff. We'll fly out over winter break; I look forward to spending some bittersweet, heart-ful time with my beloved mother-in-law. And I hope to make sure she's comfortable, and help love her out of this life. That's the best any of us can do, and what we all hope for in our last days.
  6. nilknarf

    The Gift I Didn't Want to Give

    If Carrie Lawson had tried to invoke a feeling of serenity by the way she'd designed her home, she'd succeeded. The walls were a painted light green, and the curtains a complimentary olive. The furniture looked plush and comfortable. The lighting and soft music added to the overall charm of the room. But Carrie had never planned for the latest addition to the room: a stark, steel-railed hospital bed. On that bed was her husband, Jeffrey. On the day I met him, Jeffrey put that room to its ultimate test: congested, jaundiced and moaning incoherently; Jeffrey was a stark contrast to the room's serenity. Jeffrey was one of my first hospice patients. I'd spent the previous two weeks working with a nurse who had 30 years' hospice experience. I'd tried to absorb all the knowledge she'd given. I thought I was ready for the "Jeffreys" I'd have to care for. My introduction and opening explanations to Carrie fell flat. Her responses to me were quiet and clipped. I felt her hostility before I'd had a chance to warrant it. My questions drew eye rolls before she gave me brief, clipped answers. Her eyes kept drifting to Jeffrey; then they'd stare off into the distance. All my training hadn't prepared me for stiff, rejecting posture and her unwelcoming ears. As the visit ended, I asked if she had any questions. She asked why one of his symptoms seemed to be increasing so quickly. Relieved that she seemed to want clinical knowledge, I gave her a brief review of Jeffrey's disease and its anticipated course of progress. My words were met with silence. But, then, her anger came. "I want a different nurse," she spat. "You act like he's a page in a textbook and like you're looking at a scorecard for his future." Her words hit me hard. I'd wanted so much to be a comfort to her. My heart filled with remorse and fear: what if this was how I'd be greeted by all my future patients? But I swallowed my pride and finished the visit as quickly as possible - and later, asked my supervisor to send a different nurse for Jeffrey. That was hard, because what if the supervisor wrote me off as a bad risk for this job? She didn't. Instead, she reminded me one of the ways people try to regain control is by expressing anger. She pointed to my account of Carrie's flattened responses to my questions. She asked me to imagine how it might feel to Carrie - who had, obviously, worked so hard to instill a sense of serenity into her life. She asked me how that person might feel; to have to cope with uncertainty and chaos, in the form of her husband's illness and impending death. She asked me to try to understand that Carrie might be very angry at this intrusion into the serenity she'd planned, for her life. I began to understand: since Carrie would likely find it difficult to be angry at her husband, she had to find a target for that anger. She had found one: me. "In a way, you gave Carrie a gift," my supervisor told me. "You gave her someone to be angry with." Seeing the sense of this didn't make it easy to accept Carrie's angry rejection - but it did make sense. In time, I would meet many other "Carrie's" - and those words have always stayed with me. I remind myself that sometimes, one of the gifts I can give someone is the gift of someone to be angry with. It's not a gift I want to give, but it may be the one that someone most needs.
  7. jeastridge

    Accusing Hospice

    "While I was still in prayer, Gabriel, the man I had seen in the earlier vision, came to me in swift flight...He instructed me and said to me, 'Daniel, I have now come to give you insight and understanding. As soon as you began to pray, an answer was given, which I have come to tell you, for you are highly esteemed.'" Daniel 9:21-23. We sit across from each other; the two daughters and their father sit together on the sofa, and I am in a straight chair across from them. I feel that the positioning is awkward and strained because, truly, I am on their side, trying to help them through this uncharted course of the death of their beloved mother and wife, who lies in a bed a room away physically, a world away spiritually -her mind long gone on to a better place, full of sunshine, color, flowers and peace-her body left to deal with residual functions, slowly grinding to a halt. The middle daughter, both on the couch and in birth order, speaks, her words tortured as they make their debut into the conversation, "How can hospice come in here and give her all these drugs so that she is out of it? She might get better if she could just wake up!" The father and the sister, cross their arms in unison, building their defenses against the accusation that they misread the signs of impending death and acted too hastily. I glance out the window, briefly taking note of the chilly wind whipping up the lake outside, as I lean forward in my straight chair and consciously open my hands, palms up, to show my intention to listen carefully, to withhold judgment, to be empathetic. The woman's words betray a possible sense of guilt over the geographic impediment to her own involvement in care. I hear her grief squeaking through the doorway of longing and desire to see her mother whole again. The three loved ones sit, side by side but ill at ease, as I open with words of welcome to the questions, now spoken and lying in wait about the room.We discuss the role of hospice: to come alongside patients and their loved ones during the process of dying, to ease symptoms but not to do anything that hastens death. We give voice to the beauty of dying with comfort and dignity, and to the rewards of knowing that they have done their best to honor the wishes of the woman who nurtured them. The daughter continues to speak with an outpouring of pent up agonies, twisting her blue necklace into a knot that matches the color of her eyes, "Why aren't we feeding her? I think she would eat if we put it in her mouth. Won't she be in pain if she dies of hunger?" Tears well up, held in check only by the tension that pushes itself through her hands into the helpless necklace, now wound up in a lump against her throat. Gently, using soothing tones but in a voice loud enough for the failing ears of her father, I talk about the unfortunate progression of Alzheimer's Disease, a disease that steals away, piecemeal, first the mind, then the body of its victims. We discuss the mother's recent falls, lack of appetite, vacancy of her eyes, incontinence and difficulty in swallowing. We focus also on how beautiful it is that they are able to uphold the mother's wish to not have her life prolonged by any artificial means, a wish spelled out long ago in an advance directive that stands now as a sentinel during difficult days of darkness. We talk about God's plan for bringing new life into this world-birth as a natural but sometimes difficult process that welcomes new life. And so it can be with death; when medical science has exhausted its ability to help the patient continue to live a meaningful life, when the body lives on but is a cocoon that no longer holds the spirit; then the time to allow for release comes. Our privilege as hospice nurses is to tenderly practice our brand of midwifery-managing symptoms, easing the pain, providing the physical care to promote comfort. The rubber band of tension eases in the room as tears spill out to join the necklace, now lying loose in her lap, a pile of blue stones, worry beads set free from their duty. Sisters' hands reach for one another. Their father clears his throat, trying to ease the pressure behind the dam of grief that he holds in check, fearful that a breach will never be contained. We stand together, words of thanks exchange among us, and we move to the bedside where we offer a prayer for peace, peace for her and for them. Outside, the wind settles some of its fierce blowing, and the lake turns to glass. Joy Eastridge
  8. VickyRN

    Skin Changes At Life's End (SCALE)

    The skin is the largest organ of the body and can become dysfunctional at life's end, with loss of integrity, just like any other vital body system, with reduced ability to utilize nutrients and other factors necessary to sustain normal skin function. The manifestations of this dysfunctional state are called skin changes at life's end (scale). These end-of-life skin changes stem from ineffective skin and underlying soft tissue perfusion, increased vulnerability to external insults (such as minimal pressure), build up of metabolic wastes, and local tissue factors. At end-of-life, a person may develop skin breakdown, despite multiple appropriate interventions and optimal care, as it may be impossible to shield the skin from insult and injury in its compromised state. The acronym scale describes clinical phenomena in skin and soft tissues that occur when the dying process compromises homeostasis, resulting in skin failure. Skin failure is defined as the localized death of skin and its underlying tissues due to decreased blood flow secondary to dysfunction of other body systems, often multiple system organ failure. This failure of the largest organ can be classified as acute, chronic, or end-stage. Clinicians need to have a realistic understanding of what can be achieved, in terms of prevention and treatment of wounds, due to the declining health status of individuals with multiple comorbid conditions and/or terminal illness, as they approach end of life. As stated earlier, not all pressure ulcers at end-of-life are avoidable. A common manifestation of scale is a phenomenon known as the kennedy terminal ulcer (ktu), which is a special type of pressure ulcer that forms suddenly in dying individuals. A pressure ulcer, also termed a bedsore or a decubitis ulcer, is a lesion that develops as a result of unrelieved pressure, shearing force, or friction or a combination of these factors. It usually develops over bony prominences. The damage consists of areas of tissue ischemic hypoxia, necrosis and ulceration. Pressure ulcers are most often seen in elderly, immobilized, or emaciated patients. The sores are graded by stages of severity, from stage i through stage iv. Research is limited, but the ktu is an unavoidable pressure ulcer that develops in some individuals as they are dying, usually within 2 weeks of death and in conjunction with impaired skin perfusion. This unique type of skin failure or skin breakdown is typically found on the sacrum or coccyx, occurs suddenly (usually within hours), and is shaped like a pear, butterfly, or horseshoe. The ulcers may be red, yellow, black, or purple in color, and tend to progress rapidly to stage iii/ iv. The treatment for the ktu is the same as for any other pressure ulcer of the same stage. This has been an overview of scale, a topic that is just beginning to be researched. Not all pressure ulcers are avoidable at end-of-life, especially the kennedy terminal ulcer.
  9. In nursing school, I was drawn to the "down and dirty core of nursing" that hospice care provides the patient, family and the nurse. I came straight out of nursing school and was privileged to work for years with the Karen Ann Quinlan Hospice care center. My heart was forever opened to this nursing specialty. I have, over my 20 years of nursing, continued to keep my foot in the door working with various Hospice facilities as a counterbalance to the Cardiac Intensive Care work that I have done as well. Having been on both extremes of the technical nursing spectrum, I can speak easily to the value, benefits, and peace that having a loved one on Hospice care can provide. I hope to draw value to home hospice care for the patient and family and help nurses assist and educate families with this beautiful end of life option. What exactly does Hospice care do? Hospice is "care designed to give supportive care to people in the final phase of a terminal illness and focus on comfort and quality of life, rather than cure." The goal is to enable patients to be comfortable and free of pain so that they live each day as fully as possible. This typically takes place in the home, but can also be achieved in hospice respite care facilities and nursing homes and even in the hospital. Who qualifies for Hospice Care? The standard to qualify for hospice care is that the patient has been certified as being terminally ill by a physician and having a prognosis of 6 months or less if the disease runs its normal course. Private insurance, HMO's, Medicaid and Medicare all have a hospice benefit within the patient's plan document. There is usually an initial 6 month benefit period with subsequent 60 or 90 days periods when the patient is re-evaluated and determined to still be terminal with a limited life expectancy. Patients must agree that they will no longer be treating their diagnosis for curative purposes. The insurance companies will not cover therapies considered curative the patient is on palliative care benefits. Again, each case and facility has different nuances, but chemotherapy, blood transfusions, radiation (some exceptions are made), scans, x-rays, and IV nutrition (TPN) are not covered under hospice care. The Hospice care team approach The philosophy of hospice care is to support the emotional, social, medical and spiritual needs of the patient and family. This is achieved through a multidisciplinary approach. The nurse leads the team with the patient's doctor (if he/ she agrees to participate.) If not, the hospice organization has a medical director that can oversee the medical needs of the patient. The team consists of a social worker, clergy, volunteer coordinator, durable medical care provider, pharmacy, bereavement specialists, and when necessary dietary, physical, occupational, speech therapy. The Role of Each Care Team Member Since hospice care is a multidisciplinary care concept, each member of the care team is crucial to the overall care of the patient and family. The primary care members and their roles are as follows: Nurse The nurse is the central coordinator for all care the patient receives. She/he will meet with patients and families for an initial assessment and determine the patient's needs. The nurse keeps in constant contact with the physician to manage symptoms as they arise. This avoids the need for the patient to leave the home for a doctor visit. The nurse communicates with social work, pharmacy, bereavement counselors, dietary, physical therapy, home health aides, clergy, and volunteers to coordinate the care necessary to support the patient and family during this difficult stage of life. Nurses need to use their non-technical skills to ascertain the patient's disease progress. We, as nurses, use our senses to notice subtle changes in condition and ask specific questions to determine the patient's status. The nurse will decide the number of days per week that the patient should be seen for scheduled visits (this will change as the patient's condition changes) and is available by phone to answer patient and family questions. The nurse also makes an emotional investment and connects with the family and patient to guide them through the medical and emotional stages to come. Social Worker Under Hospice services, the social worker plays a key role in discussion and negotiation of care and equipment and support services with private insurance companies and HMO's. They will translate the Medicare coverage and communicate the need for reevaluation or additional services. Often times the social worker may be the first contact that the patient or family has with the Hospice program. They discuss what the program entails and what types of services are covered. The social worker will often coordinate with the bereavement team to work with patients and families during the hospice process as well as after the patient has passed. Home Health Aide Home health aides are an option for all patients under Hospice care. The number of hours per week is dependent on the needs of the patient and family as well as insurance coverage. Home health aides are trained in basic care and assistance with activities of daily living. They can change linens, give baths, assist with the commode or bedpan, assist in feeding the patient, many are able to do basic vital signs and most importantly communicate with the nurse any care or medical issues that may be new and require intervention. Clergy Hospice clergy will meet with patients and families of any faith or belief. They are trained and knowledgeable in all denominations and often have contacts with fellow clergy of particular faiths. If the patient wishes to have visits from their own spiritual leader Hospice clergy can make those arrangements. Patients and families who may have been distant from a religion or faith will commonly seek spiritual support or guidance during the end of their life. The clergy are also an integral part of the bereavement team during the terminal process and afterward for families. Another way that clergy is important is for the staff support. Hospice staff often become very close with their patients and families and need support as well. The clergy will also provide religious education to the care team when patients have specific religious preferences or beliefs. Volunteers The volunteers play a special role and can be one of the greatest and most beneficial services that Hospice care offers. These people are usually family members of a loved one who benefited from Hospice care or former healthcare service workers. They are caring people who are trained to handle emergencies and emotional interactions with patients and families. The volunteer coordinator and either nurse or social worker will work together to find a good match between the patient and volunteer. Once assigned, the can run errands for the family, or sit with the patient so the family can go out. They may come and read or play games or just sit and talk a few hours a week to give respite to the family. Very special bonds are created between volunteers and the patient and families they serve. Pharmacy Not all Hospices have a specialty pharmacy service. However, I do want to mention them as they are a fantastic resource to the medical staff and patients. Some hospices have contracts with pharmacies to provide all patients (upon nurse request and physician order) with an emergency box that contains a small supply of emergency as needed medications. Patients will often develop a new or worsening symptom during "off" hours. Since a nurse is on-call during these hours, he/she can guide the family on how to give whatever medication may be needed to alleviate symptoms. Such conditions are nausea, vomiting, difficulty breathing, pain, and agitation. This can prevent a call to the doctor during the night and a family member's trip to a pharmacy. These hospice affiliates also send meds by overnight and sometimes same day delivery service. The staff is experienced with medical end of life care issues and are an excellent resource to the nurse and doctor when patients have developed a symptom that is not responding to traditional treatment. Medications can be mixed into suppository form, topical application and liquid to meet the patient's need. Bereavement This service is so important to the Hospice philosophy. Patients and families begin the grieving process as the patient in going through several end of life stages. Having help and understanding with the emotions they are feeling and can expect is such a benefit and can help make the dying process less traumatic. The service is as helpful to the patient themselves as well as the family. Patients can often find closure with loved ones, help plan for their funeral arrangements, write a letter to be given to loved ones in the future, distribute meaningful gifts etc. Of course, after the patients passing, family members can have one-on-one counseling and/or join support groups to share their experiences and receive support from others in similar emotional and spiritual struggles. Durable Medical Equipment The nurse in collaboration with patient and family will determine the need for equipment that will help with activities of daily living such as hospital bed, wheelchair, oxygen (both portable and concentrators), commode, walkers, bedside tables etc. The equipment is delivered and set up by the DME company and picked up after the patients passing. These are services covered by the insurance company's Hospice benefit. There are so many reasons why Hospice is a beautiful experience for patients and family members during the most difficult time of one's life. The amount of love and emotional reward that families can get from caring for their loved one is invaluable. When Hospice is involved, the amount of fear, uncertainty, and time-consuming tasks is reduced. The family members have time to focus on the love and emotional care of their family member. I can not stress enough that the earlier Hospice is able to get involved in the patient's terminal timeline, the greater benefit they receive from the service, emotionally, spiritually, and medically with symptom management. There is a great degree of dignity in dying in your own home surrounded by loved ones, pets, belongings, familiar smells, etc. Physicians, nurses, social workers, family members and the patient themselves can request hospice services. Spreading the word and educating the community about experiences, truths, and myths regarding Hospice care can provide a terminal patient with a beautiful, individual, specialized and meaningful end of life experience. There really is "No Place Like Home". Sources: Karen Ann Quinlan - Wikipedia Medical Definition of Hospice care Hospice eligibility requirements | National Hospice and Palliative Care Organization Hospice & respite care | Medicare.gov The Hospice Team - CaringInfo
  10. kaylie1

    Through the back door

    We had just finished our Monday morning hospice report. As a group, we routinely meet for 30 minutes on Monday morning to share admissions and deaths over the weekend. I was preparing my schedule for the day, still thinking of a patient that had just passed away over the weekend. I thought to myself, its pretty cool to be able to help others make the transition through death. It is often nursing care at its most basic-comfort care. This is when the call came into the office to my supervisor-"Sue." She was a bit distraught saying that the caller was the daughter of a patient screaming in the background with pain. Sue had assured me that as soon as the order for the morphine was signed off by the attending, that I would be able to pick it, and the rest of the comfort kit, up from the pharmacy. Quickly, I hurried out the door and into my car. I was on my way. I entered the address on the GPS and wasn't really sure how far away it was. I knew that the patient was to be admitted for Cancer, although I wasn't sure what type of Cancer or about the source of pain. I assumed she was dying as any other patient on hospice, but for the pain to be this severe, maybe it was more terminal. I just didn't know how I would be able to help, especially without the comfort kit and/or the morphine. About 10 minutes down the road, I received a call from Sue. She wanted to know if I was almost there. She said if the Dr. could hear the patient screaming on the phone, then he would be more likely to sign the order. The Dr. was still working on it. Sue was getting ready to follow up once again with him. Arriving at the home, the daughter "Lisa" met me in the driveway. "Did you bring the morphine?" I responded, "No ..I'm sorry, we are still working on that. Is it OK if I go ahead and see her?" She said, " Sure go up these stairs into the back door." So I ran up the stairs and entered the room of a screaming woman lying in bed. Looking directly into her eyes, I said, "where is your pain?" The patient motioned with her eyes and said in a weak voice, "down there," only to start screaming again. I asked the daughter if she was constipated to which she said "maybe." I replied, "Would you mind if I just check, I mean I know we just met?" With the daughter's assistance, I turned the patient to the side and with rectal check started disimpacting the patient. After a few balls of hard stool, the patient stopped screaming. The daughter's response was, "You really came in the back door more than once, didn't you?" Not sure she ever used the morphine or comfort kit, but I had later picked it up at the pharmacy and brought it back to her in case she needed it. I phoned the office to speak directly with Sue and said, "The pain is gone. It turned out she was impacted, and I just disimpacted her." Sue's response was, "Thank God!" The patient died the next morning. She just needed to be comfortable. As a nurse I had the unique opportunity to relieve the suffering of another person that I had just met. Entering the back door in more ways than one says something pretty special about their confidence in me as a nurse. I am proud to say that I directly relieved her suffering and helped her make it along her journey.
  11. asaltu2011

    Lovely lady

    She was a young, successful and beautiful lady, a stunning mother of 3 young children with a proud husband. They were a happy and healthy family. She liked to take walks by the sea shore hand in hand with her husband as the children made sand castles and played fetch with the dog. Life couldn't be more blissful until that day. The day she was diagnosed with breast cancer. By the time she was diagnosed, the cancer metastasized to indefinite locations. I say "she" to protect her identity, because she was one of my patients and her privacy means everything to me. Soon after the cancer was diagnosed she attempted chemotherapy. She wanted to heal and move on, to be strong for her family, she wanted to battle this, she wanted to be a fighter. The treatments made her weak, her long luscious hair all fell out strand by strand, her plump and youthful skin became dry and thin, her weight decreased daily as she couldn't tolerate food anymore. Finally, the doctor gave her a terminal diagnosis and she was admitted to hospice. And here she was, in the hospital bed. A small frail little woman lying down with knees bent to her chest. She has felt pain as excruciating as burning alive. The kind-hearted mother and gentle wife, here she was in her last stages of life. Her husband stood beside her kneeling on the floor, crying tears of deep emotional turmoil, he held her weak cold hand to his warm face as he wept with painful sighs. On the other side of the bed was a warm-faced woman, her glasses were wet with tears. I looked into her eyes and saw the deep sorrow, the dark under eyes, the depressive gravity pulling at her face. How must the emotion of having to bury your child be? The child you gave life to, sacrificed everything in the world for their happiness. And now, here is your little girl, helpless, terminally ill, too lethargic to speak, deeply fatigued just by the act of clinging to life. The lovely woman with jolly cheeks was now empty as if she has lost everything in the world, like a jail, trapped in your own body. I looked into her eyes and felt her soul, the pain, the regrets, the confusion. As I glanced into her eyes she released a heavy sigh and I grabbed her into my arms for comfort, she sobbed for what felt like hours. I cried with her, sharing the emotions her sad beating heart was feeling. I looked to my left and the husband was in the corner of the room sitting down on the carpet head down to knees, crying, sobbing loudly with pain. The tall, handsome marine was now vulnerable to uncontrollable emotional pain. The children came into the room and looked at us confusingly, their innocent little eyes glanced deeply, asking what was going on if mommy wanted to play ball with them. "Mommy is just resting," said the dad with an emotional low pitched voice as he wiped his tears. " Why are you crying, daddy?" Said the older child. The grandmother then tended to them. I went beside the lovely soul in the bed and caressed her face gently, her eyes looked into mine. Her big beautiful brown eyes had an angelic glow, sparkling like a fairy. "Are you in any pain?" I asked. She continued to look at me as I felt all the emotions of her soul. She smiled softly and with a very long pause she slowly replied "No". She was a different person now, one connected to the source, with one foot here on earth and another with the angels. The energy emitted from her essence was undeniably angelic. Although her body was cachectic and deteriorating from the cancer eating her from the inside out, her soul was radiating out from within her with brilliance. "Rest now darling, everything will be ok". I said. She smiled at me softly and closed her eyes. It's experiences like these that mesmerize me with emotions of love and compassion, leading me to the realization that all that ever matters is the love. Having a job where I can sooth the pain of a soul is not only a privilege, it's what I was made for doing, my life's purpose, the only thing that grounds me to true reality. And although hard, Nursing has been a refuge and a sanctuary for my soul to grow into. I have shed a lot of tears, including now as I write this, but I feel proud of my sensitivity, my vulnerability to empathy and enjoy shedding the layers of superficiality for the benefit of humanity. I wanted to share this with you as a reminder to appreciate life, love the people around you and to consider the things you take for granted.
  12. Meagan

    A Letter to my Hospice Patient

    To the Patient I’ll Never Forget When we first met, it was my third year of nursing. I was young and excited to start my new job in the clinic. You were in your 80's, and had been through a lot - Heart Disease, Chronic Kidney Disease, Dialysis, and now CHF. By the time we met, you had been coming to the clinic for several years. I heard nothing but wonderful sentiments about your kindness and resilience from my coworkers. I had only known you for 6 months before you surprised me – you wanted to transition to hospice. I remember that day very clearly. We had been working very hard to keep your CHF under control, but we knew it wasn’t enough. You were more short of breath with minimal activity, had more swelling to your legs, and developed reoccurring ascites for which you required numerous abdominal paracentesis. You went to see the renal specialist and cardiologist – and hadn’t received good news – there was nothing else they could do. You see, at that time, I had been a nurse for about three years and my experience came from a busy Telemetry unit. I had taken care of and helped to transition many hospice patients, but they hadn’t walked out of the hospital to go home. They were usually very ill, and after lengthy conversations with family and physicians, they were transitioned down to the inpatient hospice unit. As a nurse, my experience was actually caring for the hospice patient. What I didn’t have experience doing was initiating the hospice transition. You were my first. And, after you passed away, I realized I had learned some of the most valuable lessons in my nursing career. I learned to slow down. When you work in the hospital, you’re always in “save” mode. You’re on high alert for the slightest change, because if you don’t catch it, it could spell disaster or even death for your patient. You’re ready at the slightest change to race down the hall and put to work those ACLS skills you worked so hard to learn. You’re ready to be the best patient advocate you can be to save their life. But I didn’t work on the unit any more. I worked in a clinic with a patient population consisting of the chronically ill. It dawned on me when you chose hospice that it was okay to slow down. I learned it was okay to use my clinical judgement as a nurse to initiate those difficult conversations with my patients and take a more holistic approach. I learned that hospice does not mean “giving up.” When we talked about hospice and your thoughts on starting the process, you told me with such conviction that you were ready. You had been through “save” mode many times. You had been stuck countless times for IV’s or labs, had numerous abdominal paracentesis’, and had already been through dialysis. By this time, you didn’t want any more doctors office visits, trips to the hospital or any invasive procedures. I remember you telling me that you felt so blessed to have made it this far, and that resonated with me. I learned what dignity truly means. By definition dignity is, “the state or quality of being worthy of honor or respect.” After you passed away, it was hard for me to see that empty chair every week. But, what I realized was that you had given yourself and your family a gift. There are times in our nursing careers when we see patients who can’t make these decisions for themselves. Sometimes they don’t have advanced directives in place, or they have family members that just can’t agree. I respected your family’s commitment to your wishes, as this is something I don’t think we get to experience often enough. Although many years have passed, I will never forget the conversations we had, and the lessons I learned as a new nurse. I think about that day often and I thank you for helping to shape my nursing career. Fellow Nurses, have you had similar experiences that changed your nursing practice? What was your greatest take-away?
  13. During my experience in nursing school, my days consisted of completing stacks of medication cards, answering hundreds of NCLEX questions, spending long days in clinicals, and binge-watching Grey's Anatomy. Thanks to the unrealistic expectations I developed from watching an extremely fake yet enjoyable medical show, I went through nursing school believing that we could save anyone. If someone had cancer, some radiation or chemotherapy treatments could eventually cure it. If someone went into surgery, the surgeon would complete the surgery with no complications and the patient would be good as new. In my class, we spent a majority of our rotations on the med-surg unit at a small hospital, where most patients would improve and go home, better than they came in. Little did I know, there was a field of nursing that we were never prepped for in my nursing program: the complex world of hospice nursing. As an LPN, we were always told that we could pick between a nursing home or a doctor's office to work. After talking with a classmate who was affiliated with hospice, I decided to try hospice as a new-grad nurse. My biggest fear was that I would lose some of the skills that I learned in nursing school when coming to hospice. As a continuous care nurse, I could insert subcutaneous sites, manage PCA pumps, administer medications in many different routes, and many more things that I never thought a hospice nurse could do, especially in the home of a patient. Working as a night nurse, I had to make decisions for the patient based on my observations of my patient; many nights, I had to get in touch with the on-call doctor to request a different medication or dose based on what I believed the patient needed. Needless to say, I was forced to gain confidence for my trade quickly. Besides the skills and critical decisions that I was required to make during work, the emotional side of hospice was a whole new ball game. I have learned to appreciate the power of silence and holding a patient's hand when there's no need for words. I have learned to keep my composure when all I want to do is break down with the family who is grieving the end of life stage of their loved one. One of the hardest things to go through is trying to comfort a patient who is afraid and hasn't accepted their diagnosis. Many times, when sitting with a patient who is in the end of life stages of their life, the patient will reminisce on their life. It breaks my heart when a patient feels as if they still have a lot to accomplish, yet their time has been cut short. I admit that I have left multiple patients' houses in tears, aching for my patients. Each time I go into work, however, I feel myself getting stronger and able to be a better nurse for my patients. A month ago, my mom was rushed into the hospital; she suffered from respiratory arrest and was on a ventilator when I arrived at the hospital. After losing my mom, I didn't think that I could return to work, caring for dying patients every day. During my first night back, I had to do a time of death report for a family who was have a great difficulty coping. Being able to empathize with my patient's families shed a new light on hospice; I realized just how much the presence of a personal who cares meant to a family suffering from a loss. Before leaving this patient's home, the patient's daughter called me an angel, claiming that God himself sent me to them. After this comment, I knew that even though I couldn't improve my patient's condition, I served a purpose when I came into the home. At this point in my career, I have been a hospice nurse for almost seven months; in these seven months, I have had my fair share of laughs, tears, and soul-searching. Some nights, after leaving a patient's house, I wonder how I could pull it together for the family. The lessons I've learned in hospice were not taught in nursing school because there's no way to learn it other than experiencing it first-hand. Although I know that I won't be able to save a life when going into work, being able to be someone's "angel" is satisfaction enough to feel great about the work I do. Having the opportunity to make the last stage of a person's life more comfortable and memorable makes hospice the most rewarding job a nurse can have, especially when you may be the last person that patient sees before they are called home.
  14. Baby Cherish arrived at the unit on a winter afternoon via medical transport in a flat car seat bed belted securely to a gurney that looked way too big for tiny 5-pound little self. We had been preparing for her arrival to the unit well before her birth the day before. As her arrival time approached, we lovingly prepared the family suite to be as welcoming as possible. We set up a bassinet with beautiful bedding, laid out diapers, made sure the recliner had a baby blanket draped over one arm of the chair. This was a different kind of special delivery: baby Cherish has come here to die. We were there to support that process for the family at our pediatric hospice/palliative care unit. Baby Cherish's parents found out about her severe congenital birth defects early in the pregnancy, and because of their religious beliefs, chose to continue to the pregnancy. They also made the choice that when she was born, they were going to let nature take its course, rather than choose advanced medical interventions. As baby Cherish was removed from the car seat and placed into her mother's arms, I made it a point to call the baby by her name, to emphasize the specialness of welcoming a new baby into the world, to congratulate the mom on the birth of her third child. I told the mom we would not be taking vital signs, and would only listen to the baby's heart and lungs once per shift. Otherwise, the mom was welcome to make her self at home, and we would respect her privacy and support her and her little family any way we could. When I left the room, Cherish's mom was sitting in the rocking recliner holding her baby against her breast, with an expression of great love on her face, and starting to relax. This was not the NICU. This was a safe space for Cherish's parents to enjoy whatever time they had left with the baby. As I walked away from Cherish's room, I thought of my friend Nina, who had taught me so much about how to talk to a parent of a baby who has died or is dying. Ten years earlier, before I was a nurse, Nina lost her baby to severe congenital birth defects, too. She lost her at 20 weeks when she chose to have a therapeutic abortion. Nina's baby, whom they nicknamed Wisp early in the pregnancy, was very much planned and wanted. It was Nina and Ben's first baby. They got pregnant easily, announced it right away, and shared the different stages with friends and family. On the day of the big ultrasound when they were to hopefully found out Wisp's gender, they did not post the expected news, or any grainy black and white ultrasound photos as expected. There was just silence. Then I got a call from our mutual friend, saying that they had discovered the baby had severe birth defects that were not compatible with life. We were not sure what to do or how to help. We quietly left gift packages at their door, left messages that we were there for them. A few days later Nina called me and said they had decided to terminate the pregnancy. Her decision was one of love. She didn't want baby Wisp to suffer, to go through the harsh birth process only to have lung and heart failure and die. Although I had my own views on women's reproductive rights at the time, being a new mother myself put a new spin on what was before a philosophy more than a reality. Now a mother, I imagined myself in her situation and wondered what I would do. I could not imagine facing the abortion of my own baby, nor could I imagine facing holding my baby while she died in my arms. There was no easy answer, and as I processed my own beliefs, I concluded that there was no right answer, except what was right for each family in each circumstance. And so I supported Nina through the abortion. Years later, Nina still stamps an angel at the top of their family Christmas cards. Wisp floats above her three siblings who were born after her, and their parents. She is always remembered. I make it a point to refer to her by name whenever the subject comes up. When asked how many children she has, she always answers that she has four. Nina taught me to always call her baby by name. Baby Wisp was wanted, loved, and is still remembered. As a former pediatric nurse who worked in ICU and stepdown ICU, I have seen my fair share of babies who had severe birth defects, whose parents chose to continue life for as long as possible-- and it is possible to continue life for years, decades. Depending on the outcome, this can be either a gift or curse. What kind of life is afforded to children who are given the best advanced medical care? In some cases the children become stabilized, stronger, and they know a life filled with love and joy. This is the ideal situation. I have seen little babies who I watched endure trachs, vents, gtubes, and corrective surgeries grow up into children who smile, know their parents and siblings, go to school, and add joy to the world and their families. My own brother was born with Cornelia deLange Syndrome in the late 1970's. We were not sure what to expect, or how long he might live. His six years of life enhanced mine, and taught me a special kind of compassion I would not have otherwise known. His place in our family was important and special. However, I have also seen babies who remain bed bound their entire lives, whose bodies get bigger but they remain even more helpless than a day-old baby, who are not aware enough to interact at all, whose only facial expressions are painful grimaces, who endure countless bouts of pneumonia, sepsis, surgeries to correct dislocated hips, severe scoliosis, painful spasticity of muscles, seizures, and severely contracted joints. Often the care of such children takes such a toll on families that they experience divorce, siblings are neglected, and the special needs child ends up at a long-term care facility. It is hard to predict which way a child will turn out when they are an infant first being held in a parent's arms-- when they have to make that very difficult decision to love and let go, or fight with advanced medical technology, or somewhere in-between. When they look to doctors for help in making these decisions, the doctors often shy away from presenting hospice or palliative care as options. They are trained to fix people, not give up and let nature take its course. I think because it's a difficult subject, many doctors are also afraid to lay out the not-so-pretty long-term prognosis for many of these children. And so the non-medical, inexperienced parents are left on their own to decide what would not have even been a decision twenty years ago. When I was 23 weeks pregnant with my second child, I went into preterm labor, and spent the next precarious weeks and months on strict bedrest and medications to keep her from being born too early. I contemplated what choice I would make if she were born at 23 weeks (no medical interventions), or at 28 weeks (give her a chance at life if all looked good). When she was born at 36 weeks and appeared healthy, I was so relieved. But then things went wrong. At three months old she required a feeding tube. She used it for six years. She required therapy to catch up to age level. She suffered horribly with daily vomiting the first three years of life, had endless medical testing, and finally at age two, the diagnosis of a rare GI condition that she has since outgrown. We thought we had our problems behind us. Then her knees started to dislocate in 2nd grade. It turns out has a form of an inherited connective tissue disorder called Ehlers-Danlos Syndrome. She not only has mobility issues (had at the age of 12 has already had two major knee surgeries), but the scarier prospect of vascular system issues as she gets older. We have an appointment with a geneticist next month to find out the severity of her syndrome. And to top it all off, she does not respond as well to pain medications as most people, do. So her procedures are more painful than normal and require the use of a special pain team of doctors to get her through them. If I had known early in the pregnancy the pain - both emotional and physical-- that she would endure in her lifetime, would I have chosen this kind of life for her? There were times, as I sat holding her through her pain that I could not make better, when she was angry at me for agreeing to the surgeries even though there was no other choice, when she had to ride the special needs bus in her wheelchair for 8 weeks post-op, devastating to a developmentally typical 6th grade girl-- and the night when I finally broke down and gave her a prescribed Ativan so we could both get some rest, that I wondered if this was all worth it. But then when she's having good days-- which is most days-- I know it was. And, I had no choice in the matter anyway. I did the best I could given the knowledge I had at the time. Which is the case with most parents of special needs babies and children. It's not fair. It is not fair for a parent to learn of a baby coming, to anticipate a lifetime of joy and love, of "firsts." And then to find out that the baby has devastating problems. I do not envy the position of any parent who has to make a decision on the fate of their child, whether it be to terminate a pregnancy at 20 weeks, or deliver a baby and let them die peacefully, or to choose to give the baby the best shot at life through medical interventions. Or, in my case, to choose to go ahead with the third knee surgery next summer, because in the long run it will enable my daughter greater mobility and less joint damage down the road. Even if she is angry at me and angry at the world and God for awhile. As I write this, I think of baby Cherish being held in her mom's arms for their precious time together. I think of baby Wisp being held in her mom's heart forever-- this baby who inspired to her eventually become a doctor and an excellent patient advocate. I think of my own baby girl, nearly a teenager, living a full life of sleepovers, violin practice, and spending way too much time on the internet, even as I hurt for her as she faces a lifetime of surgeries, mobility issues, limitations, and chronic pain. As a nurse and a mom and a friend, I have learned that no two situations are alike. No two children are alike. No two families are alike. I have to both put aside my own feelings on the matter, and draw on my experiences so I can relate to the patients with true empathy and compassion while they are in my care. I recognize that each of these mothers, in each of the difficult decisions they made, acted out of love. It is my role to meet the patient and family where they are in that moment in time, to make them feel safe, to support them and make their hearts rest easy that they are in good hands. Beyond the medical training, the pharmacology knowledge, technical skills, charting, and coordination of care with other team members, it all comes down to one thing, the very heart of nursing. It comes down to love. *Note: the names and other identifying details of people in this article have been greatly altered to protect their privacy, and some of these characters are composites of several patients I have had.
  15. clemsongal68

    How could you give up and do NOTHING?

    One of my most memorable patients was Pete*. 85 year old Pete had come from a nursing home with significant abdominal pain and vomiting. After a quick trip through the ED, he got himself a CT of the belly, a NG tube, some IV fluids and some pain and nausea meds. Admitted to the 4th floor, he quickly started going downhill. The ICU nurses at the hospital where I worked served as resources for floor nurses if they thought a patient looked like they were declining...a measure put in place in hopes to avoid a code. His floor nurse had called ICU asking for help, so I headed on up to see Pete. Running into his surgeon in the hallway, we spoke briefly before going in to see Pete. It wasn't good...at all. Now Pete was a tiny thing, probably 90 pounds soaking wet. It was obvious his appetite had waned significantly the last few months as he literally was skin and bones...except for the biggest brown eyes you could imagine. Eyes that mirrored his fatigue, anxiety and pain. So much was out of his control and he appeared a helpless victim in the war of disease. He was on a 100% nonrebreather mask when I first met him. His respirations were labored as he struggled to catch his breath. Yet, he clung to every word the surgeon told him...words such as small bowel obstruction, sepsis, cancer everywhere, poor surgical candidate, probably won't make it off the table. Powerful words. His sister beside him openly wept while receiving the news. Afterwards, the surgeon headed out and told the patient and his sister to let me know what they decided, for they needed to decide soon before it was decided for Pete (via a code). I sat next to Pete and held his hand. I told him that I would support him in whatever he chose. If he wanted to fight, we would take him to surgery and afterwards to ICU if he made it. That we would do everything we could to save him and would try to minimize his distress. Yet, I made sure I explained to him and his sister what "do everything" entails. It's not pretty...and it's not easy. It's certainly not like on TV! He needed to know that it would be an uphill battle, probably for weeks. I covered being on the vent and having multiple lines and tubes. He most likely would have to be restrained at times. The "do everything" was option #1. I also told him about option #2: comfort care. His doctor and I were recommending comfort care because we felt that Pete's body was dying. With the poor odds of him surviving surgery and recovery, we felt like it was more humane to just make him comfortable. Yes, the doctor and I knew it would result in his death, but we also felt that aggressive measures would still result in his death, yet with the addition of much suffering. But, ultimately the choice was up to him and his sister. You see Pete had never married...nor his sister...they had been best friends their whole lives. Pete didn't take long to decide...he revealed that he was so tired of hurting and struggling to live. He said, "I just don't have any more fight in me. I know I'm dying. I'm fine with it. " I updated the surgeon and called his hospitalist. A DNR (do not resuscitate) was signed and hospice consulted. A morphine drip was started with prn Ativan orders for any restlessness. The morphine did wonders. It truly is the drug of choice for air hunger. We were able to change his oxygen mask to nasal cannula for comfort. His respirations settled down, he was able to relax and go to sleep. As the evening passed, Pete's coloring changed: his hands and feet became mottled, reflecting his lowered blood pressure as the sepsis progressed. He started having periods of apnea...5 seconds...then 10 second stretches...yet he slept peacefully on. His sister sat beside him, having said her goodbyes as the morphine was started. By midnight, Pete slipped away, peacefully and in the presence of the one who loved him the most: his sister. Many folks would ask, "How could you give up and do NOTHING?" Yet, there was much we did do: we gave a kind and gentle man rest, a peaceful passing in the presence of someone who loved him dearly. We gave his sister support during his transition and the chance for hospice to follow HER for 14 months after his death. Hospice is not only for the patient, but very importantly for the family, especially that first year after their death. Believe me, it IS something! *Name changed to protect patient
  16. I work PRN at a hospice house. I was taking care of a patient that had been with us for 2 months and was very well known to the full-time staff, yet I had only taken care of her on 3 occasions. There had been several issues with the family due to cultural differences but the times I had taken care of her she was alone and resting. Until Thanksgiving. One of her sons called me into her room and very politely asked to have her transferred to the hospital to pursue life-saving measures. I was a bit taken aback as this was not a situation I had encountered yet. I maintained composure and professionally educated the son on his mother's condition (poorly responsive, no PO intake for days, weak pulses) and the limited resources the hospital would be able to provide, only delaying the inevitable. He relayed this to another family member on the phone who was adamant this was what they wanted. I spoke with the HCPOA who also confirmed this request, and followed policy by making the medical director and clinical supervisor aware and then calling EMS. The son signed the revocation form. When EMS came to transport the patient, they tried to educate the son as well to no avail. Her failing body was transferred to a stretcher and taken out of the hospice house. The entire interaction from beginning to end lasted only an hour. I know that my direct interaction with the family was professional and without judgment, but afterwards with my co-workers, I was angry and judgmental. And I carried that mindset with me home and for the rest of the night. I judged their decisions. I assumed they were uneducated on their mother's condition and prognosis. That they were being selfish and causing their loved one to suffer more. As a nurse, I assumed I knew best. I've seen countless people pass away at the hospice house. I've educated and re-educated family members who are grieving too badly to understand. Some are more accepting than others. Some just can't let go. But when they are too distracted, too tired, and too afraid to face reality, it is not my place to judge. The next morning as I was driving to my full-time job I prayed and reflected on my thoughts and actions. I felt ashamed of my lack of compassion and empathy. Why didn't I place myself in their shoes? Why did I feel the need to speak my bitterness and judgment on a situation I had no real knowledge about? Why was I carrying a burden that had nothing to do with me? As healthcare workers sometimes all we can do is educate. Patients most of the time actually won't do as they are instructed. They are often noncompliant with their treatments. It can be frustrating for us. But it is not our disease. Ultimately it is not our decision and it is not our life. It is easy for us to vent to our co-workers (and sometimes necessary) but it is not our place to judge. We end up carrying that negativity with us whether we realize it or not. The next time you are involved in a situation that is ethically controversial, that goes against your knowledge, that is testing your patience and that you may disagree with, take a deep breath. Try and take an understanding approach from the patient's or family member's point of view. We do not know their entire life story, their family dynamics, or their thought process. It is our job to educate, listen, advocate, and support. It is not our place to judge.
  17. "People brought all their sick to him and begged him to let the sick just touch the edge of his cloak, and all who touched him were healed." Matt. 14:35-56 I arrived at the house ahead of the ambulance that was bringing the patient home, and noticed the gathering clouds of a summer storm sweeping its arms around towers of humid air, ready to release the tension of the hot day. The family met me at the door and I went around the room, shaking hands with the patient's daughter and granddaughter. The elderly husband, came in last, shuffling a bit, but smiling and extending his hand in greeting. The granddaughter bent over conspiratorially to whisper, "He has dementia." I asked a few questions about medical history and explained some of the process of admission to hospice care. We heard the ambulance pull up, it's loud back-up "beep, beep" bringing our conversation to a stop. We all looked beyond the hospital bed that stood parked by the front window, to see the ambulance driver rush around to the rear just as the first raindrops fell. When they brought her in, she clutched her sheet over her face and wiped the rain out of her eyes but then kept wiping as more water sprung out in tears. Her face crumpled as she wept and her family rushed over, trying to determine if she was in pain. She smiled through her tears and said, "I thought I would never see this place again." I walked around to the other side of the bed, took her hand gently in mine and introduced myself. While I helped her finish wiping the rain from her face, I noticed her bright blue eyes, set in pale skin, framed by soft white hair. She was quite lovely for a woman her age, and her smiling eyes added to her beauty. Just then, he husband came over from the corner where he had been trying to get out of the way. He reached down and took her other hand and sat down beside her. He caressed her fingers and then leaned over to kiss her. The tears came again, this time to the eyes of those of us watching the scene unfold. As I continued my assessment, I touched her forearm gently while taking her blood pressure and asked questions about the pain. Before inspecting her abdomen where an erosive cancer had left a draining wound, I donned gloves and asked permission with eye contact. Then with the help of family, we turned her over gently so I could inspect her skin, noting several red places on her back and coccyx. Her mobility was impaired by the of pain of a recently fractured vertebra. That together with significant weight loss and poor intake, contributed to many skin integrity issues. After a careful assessment and lots more questions about bowel and bladder function, pain, and respiratory status, I worked with her granddaughter to get her positioned with pillows and one of her own quilts so that she could rest from her transfer. Through all this, her sweet husband stood nearby holding her hand gently in his. While I offered the touch of compassionate care, he offered her the comfort of a well-worn and enduring love. After we finished signing the requisite paperwork, I gathered my things and stood. Then I waited to take a cue from the granddaughter and daughter, reading their non-verbal communication to see if they would welcome a gentle hug or if a handshake would again be more appropriate. Sensing their need for a comforting touch, I offered a sideways hug to the daughter and reciprocated the granddaughter's approach for a full hug, then moved over to squeeze the patient's shoulder gently. Her husband, now seated beside her on the bed, simply nodded his goodbyes. As I walked down the front steps, papers in one arm and computer bag in the other, I thought again about the beauty of the touch between the patient and her husband. I wondered about how touch plays a part in healing. Although the patient had a terminal diagnosis, and was weak and frail, the husband's touch was clearly healing, bringing her comfort and peace at a difficult time. I wondered about my role as a professional nurse and my use of touch during this interaction and in others. I asked myself questions about touch: when is it therapeutic and when is it invasive? How do I know where the fine line is that separates those two? How can I be a better listener so that I see and interpret non-verbal communication? I wondered, too, about how our necessary protective barriers separate us from our patients. With gowns, gloves, face shields, how do we continue to convey warmth and provide for a healing touch? In the home, it is admittedly easier, as family members and nurses sit side-by-side on a couch, signing papers, a natural closeness happens. But what about in other settings? I have been blessed to be a person with relative good health and only a few opportunities to pass through the medical system during times of crisis. But those times touch and posture stand out, in stark relief: the doctor who crouched down to eye level in the ED to tell my beloved sister, "This is the end of the road;" the nurse-midwife who recited the Lord's prayer in the delivery room while holding my hand; the nurse who held my forearm gently to steady me as she told us our teenage son's CT scan was okay after he had a serious bike wreck. The touches were all brief, but the healing they brought continues to warm my heart. A touch can make all the difference. As nurses, we learn from experience and also from modeling what is appropriate touch and how to employ touch with compassion and respect. That evening, as the setting sun peaked out again from the spent clouds, I stepped over puddles and looked back over my shoulder, to see the warm glow of light coming through the patient's picture window, framing the family members as they moved about the room, holding onto the love that held them together. Joy Eastridge, RN, BSN, CHPN
  18. It's 0653. I pull up to the hospice unit, clock in, fill my coffee mug, and get my nursing brain printed out. At 0700, I count narcotics and take report on six patients. It's going to be a busy day, one of those days where I must control the chaos, take the time to support patients, complete as many of the thousand tasks set before me as I can, and be prepared to deal with the unexpected. I work in a palliative/hospice inpatient unit, a place where patients come when they are in crisis, can't be cared for at home, or simply have no place else to go. One of my patients today is in indigent man who has no one in the world. We cannot locate his family. We don't even know his real name. He slipped into a coma yesterday and is non-responsive. We take care of him, call him by the name we think he has, and witness his last hours or days. In the room next to the indigent man is a very, very old woman, the matriarch of a large Native American family. Her family comes and goes all day. At any given time there are 5 or 6 people in her room on folding chairs. Children walk the halls as if they own the place, but they are respectful and polite. Volunteers keep the cookie jar full, the coffee pot brewing. The family has filled the kitchen with potluck dishes. They tell the staff the food is for us, too, and the family members of other patients if they want it. As I head towards the med cart, the smell of bacon fills the unit. A CNA is cooking for one of the patients who is still eating. I meet the wife of one of my patients in the hallway. She's tearful and scared. I have four patients who need scheduled meds now, but I take her aside and listen to her for a few minutes. I say the only thing I can say with honesty: "I know this is hard. We are here for you. "The tears start to spill and she turns away and heads to her husband's room. I run to the med cart and pull the meds. One of my patients, let's call him Robert, is actively dying. I admitted him three days ago and have not seen him since. He's a younger cancer patient. His cancer moved fast. Three months ago he was living a full life. When I admitted him he was still talking, expressing his grief, telling his horrendous tale of all the invasive treatments he had received. I could tell how traumatized he was by the expression on his face as he was reliving his recent ICU experiences. He was admitted directly from the hospital. He said that after the last treatment he just wished he could die right then and there. I asked what were the most important things we could do for him here. He said he wanted quiet, no alarms, no more tests or treatments. But most of all, he wanted peace. I told him, "This is not a hospital. You are in the driver's seat here." I pointed out that there were no alarms here. I said we would try very hard to make sure he was comfortable and at peace. That was two days ago. Robert was now actively dying. I am a newer hospice nurse. I am still learning the ropes. I left my successful job in a pediatric ICU/step-down unit three months ago. I had one very hard year as a new grad nurse, two very good years, and two years of slow burn-out. In the ICU, I often took the dual roles of life-saver and torturer. Many times the torture was worth it. But many times it was not. My shifts were task-oriented, intense. They had to be. I focused on the monitors, drips, airway, vent, labs, juggling all of that very carefully. The patient sitting in the ICU bed was a human being whose feelings were, at that moment, secondary to the more immediate and important need of saving their life. And sitting in the dark corner of their room, scared and silent, was that patient's parents, living their worst nightmare. Once in awhile, I would try to find a break in the million tasks I needed to do on time, so I could go and explain what was going on, offer to get them a cola or validate their feelings. But more often than not, I just had to let them sit. I didn't have time. I went into nursing to heal. And while the ICU certainly did that much of the time, I became burned out. I lost the heart of nursing. Thus, my calling to hospice. As I enter Robert's room this morning, I notice his breathing is heavy, his forehead wrinkled. I call his name and he opens his eyes. They search the room, unfocused. I put my face near his and smile and say, "Hello, Robert. Good morning!" and his eyes find mine for a second and hold them. He relaxes and smiles, and then his eyes let go of mine and close. He grimaces again. His breathing is still heavy, chest congested. I give him his PRN dose of morphine and Ativan, but I see very little improvement. I leave to go email the doctor on call to ask for an increase in Robert's medication. I still have patients who need scheduled meds but Robert urgently needs a med adjustment. He is, at the moment, my first priority. Two family members approach Robert's room. I know it will pain them to see him in such distress, and I tell them I just contacted the doctor and more medication should be available very soon. I fly into my last rooms, give the scheduled meds, see that they are stable and doing fine, and log into the computer to check my email. An order change for Robert! Robert, luckily, had central line access. I give the meds immediately and stay to watch as he relaxes, his breathing becoming less labored, and his face more peaceful. I tell the family I want to position him on his side, and they hold the pillows for me. As I am positioning his cancer-wasted body, I point out the mottling of his knees and feet, how they feel cool, and how he is sweating, and how these are all signs that death is approaching. They bravely listen and nod in acceptance. They ask, "How long do you think he has?" I tell them, "Each person has their own timing. It could be very soon. I am guessing hours to a day or two. But I think it will be sooner rather than later" I tuck him in and put my hand on his forehead, something I do with all my patients, as tenderly as I do my own children, and I say a silent prayer for peace. Then I leave and close the door behind me. I navigate my way past the crowded hallway filled with the family of the Native American matriarch, and I hear singing from within her room. I go into my last room, a woman whose pain crisis is now being managed well. She has a few more months, and hopefully, she will be able to remain comfortable. She is snuggled with her small dog in her bed, her son at her side. I work around the dog in doing my assessment. She is due to go home later today. I return to my nursing station, peeking in on each patient as I pass their rooms. I have a mountain of paperwork to do. How will I ever be able to do it all? I need to print out medication instructions for the patient with the dog. Before she leaves I will have to find another nurse to count her controlled meds with me. I still need to enter the email order of Robert's increased medication doses in the paper chart, to be co-signed by another nurse, and then print out a new MAR sheet for that order and sign it. I still have wound care to, and in another 30 minutes, it will be time to turn everyone with the CNA's assistance. As I am working behind the stacks of charts and papers, the sad wife comes up to me. "I'm sorry for interrupting your work... "she starts off. I stand up and come out from behind the counter. I tell her, "You are not interrupting me. It is my job to support you. That's why I'm here. "She relaxes and asks questions about what steps to take next, what to expect. Some of her questions are better answered by the social worker, so I escort the wife back to the room and go and talk to the social worker about her needs. As I make my way back to the desk, I peek in on the patients again. I notice our chaplain sitting at the bedside of the indigent man, singing a hymn. I continue to do my paperwork and emails. Something tells me to look up, and I see Robert's door opening. His uncle steps out, and he has that look on his face that I have gotten to know: shock, grief. I reach for my stethoscope as he approaches. He says, "I think Robert's gone." I walk in with him, find the bed surrounded by loved ones, all silent. All eyes are on me. I can tell from first glance that he's lifeless. I take Robert's hand in mine and hold it gently, feeling for a pulse. I put my stethoscope on his chest and listen. Everyone holds their breath. Silence. I listen for a few more seconds, then look up, make eye contact with everyone and tell them, "I'm so sorry. Robert is gone." The tension breaks. Tears are released and pour down cheeks. People hug each other. There is relief in the long, drawn-out death. I stand to the side for a moment and wait for the first wave to pass. I say, "Take all the time you need with Robert. We are here for you. Please come and find us if you need anything, anything at all." The uncle nods. I turn and close the door quietly. I go to our patient census board and wipe out all the details of Robert that no longer matter, leaving only his name. I write in, "TOD: 1246." I give out my next round of meds, continue to assess my patients, update the doctor. I am invited to take some lunch from the buffet of the Native American family, and even though I brought my own lunch, I know they have a need to feed us. I fill a plate as one of the sons nods approvingly. I go back to my desk and start to break down Robert's chart and prepare to destroy his controlled meds. A woman rushes in, tearful, and asks where Robert's room is. I stop her and ask if someone has called with an update on him and she nods and said, "Yes, I know. He just died." She starts to turn to the room and then stops and turns back to me. She puts her hand on my forearm and asks, "Was it peaceful? Did he go peacefully? Because that's all he wanted." I look her in the eyes. I can honestly say "Yes, he did. He was very relaxed and breathing easily, and he was very comfortable." Tears form and she says, "Thank you. Thank you" before the words leave her. She enters his room. Two more hours pass. Robert's family tell me they ready for me to call the mortuary. I make that call and go back to the afternoon tasks. I perform my wound care, finally: an elderly woman who was found down, a broken hip and multiple severe skin tears. She never fully regained consciousness. It is clear that until her accident she had been in good health. Her family is still in shock. They asked how long it might be. I tell them that once a person stops eating and drinking, as she had three days ago, it would be about a week, give or take a few days. Her daughter nods bravely. I reassure her that her mother appears comfortable and we plan to keep her that way. She swallows hard and says a quiet, "Thank you." I send the woman with the dog home after giving report to her home nurse. In my later afternoon rounds, I notice that the indigent man's breathing pattern has changed. His head is arched back and he is grimacing slightly. I moisten his dry mouth and lips and administer a PRN dose of morphine, turn him on his side, tuck him in, and touch his forehead with my prayer before leaving his darkened room. I do another round of scheduled meds, and some PRN's, too. The man from the mortuary is here to pick up Robert. I have him sign some forms and take him to Robert's room and introduce him to the family. A few minutes later Robert's body is wheeled out. His family lingers in the lounge. Each of them hugs me or shakes my hand and says thank you as they trickle out. I have so much paperwork to do, but I stop those thoughts as I take the time to shake hands with them. It's hard for them to leave, to know that it's over. I am helping them to do that. It's dinner time. The Native American family offers (insists!) that we take some more of their food, so we all do. I make my last rounds. I notice the indigent man has slipped away as quietly and anonymously as he walked through his life. I confirm his death. TOD: 1803. I remove his pillows and position him straight. I call the county's indigent burial number and know that someone will pick him up soon. I set aside his chart. The night nurse can finish his discharge. My charge nurse hands me a sheet: "We have another name," she says. I take report on the patient who will be going into Robert's room in about two hours. Our unit is in high demand, a revolving door. As a hospice nurse, I have to continuously strive to not get lost in the tasks, to prioritize, and to do the most important ones well. Hospice nurses have a lot of"wiggle room" to make nursing judgments. Each patient is different, and so are the rules for each patient. I'm still adjusting to this shift in the model of care, still untangling my mind from the ICU. Slow down. Meet the patient where they are on their journey, walk the pace that they set. Look at the patient, not the machines. It's 1905. I count narcotics with the oncoming nurse. I give report, trying to pace myself to give the most important details about each patient, but not so long that the important things get buried. 1930: I should be done, but I'm not. I take my paper charts to the break room and I finish writing out my narratives on each chart. The Native American matriarch, the woman with the broken hip, Robert who is now at peace, the woman with the dog, the man with the grieving wife, and the indigent man. I relive my day with each of them. It hits me, as it does almost every day, the sacredness of the work I do, the journey I am allowed to walk with the patients, and the job I have of facilitating that journey so it is as peaceful as possible. And knowing that it just as much as an honor to be there for the last breaths of life as it is to be there for the first breaths. And then there is still paperwork to do. I pick up my pen and finish charting. 2003: Finally I am done. Am I forgetting anything? I hope not. I clock out. As I walk through the lobby, some of the members of the Native American family wave to me and call out "Thank you! Goodnight!" I enter the crowded parking lot. I see four people hugging each other and crying. The county mortuary van pulls up and parks. He is there for my indigent man. I get in my car and head home down the dark streets. I see life all around me: a family out for a bike ride, people pulling out of the grocery store parking lot. I call a friend and catch up as I fight fatigue. "How was your day?" she asks. I have so much I could share, but I'm so tired. I have no words. I have a thousand words. I finally settle on saying simply, "Good. I had a really good day."
  19. jeastridge

    Palliative Care + Hospice = A+

    November is National Palliative Care and Hospice Month I scrolled down through the EMR and found what I was looking for: Palliative Care Consult. As a hospice nurse, we often get referrals from Palliative Care and their consult is a great place to start reading to get a picture of where this patient has been and what their current situation is. As I read, I discovered the 72 year old patient had extensive lung cancer and had been treated with radiation. During treatment, he began to have severe bone pain as the disease progressed. His oncologist called in Palliative Care to assess the current situation and to begin discussions with the patient about possibly transitioning into hospice care. After reading through the consult, I felt more comfortable about beginning a conversation with the family, knowing that the door to end of life conversation was already open and that hospice was not a completely foreign term to them. I gathered up the referral, the patient's history and physical, and general information about our particular hospice agency before I headed down the hall and knocked on the door, ready to do the Hospice Evaluation to determine if the patient was ready for and qualified for hospice care. After knocking, I heard a soft, "Come in," on the other side and pushed the door on open. In the small hospital room I saw the patient in the bed, his white hair blending into the pillow, oxygen in place, hands on either side of the tucked in sheet, palm down, as if holding the bed in place by the force of his will. He smiled, a kindly smile and said a weak hello. Beside him sat his wife, eyes lined with worry and circled with dark shadows that betrayed long hours of vigil. I introduced myself as the hospice nurse and saw his wife's mouth make a small "oh" as she exhaled long and deep. After pulling up a chair, I sat down and started by asking him how he was feeling and how the pain was at this time. After we got to know each other a bit, I began to gently explain what hospice is and does. While hospice partners with palliative care, the two serve distinct and different purposes in the health care arena. Palliative care joins the patient's health care team when there is a need for symptom management during the treatment phase of long term illness. They help respond to a variety of troubling symptoms including pain. They are experts in identifying and foreseeing potential problems that complicate the patient's ability to continue to find enjoyment in life. Palliative care also plays a strong role is helping families begin discussions about Advance Care Directives. Because of their specialized training, they have the ability to approach the topic of the patient's end of life wishes with sensitivity and finesse. Hospice care comes into the picture when the physician team feels that there is a shortened life expectancy of six months or less. While this time frame is difficult to pinpoint, in practical terms it can mean that the patient has extensive disease that continues to advance with limited therapeutic value to be found in any available treatment modalities. Whether it is cancer, or end stage lung disease, or end stage heart disease or end stage renal disease, or some other life-limiting condition, the hospice team's role begins when all options are weighed and in the balance the potential success of treatment is overcome by the potential difficulties of complications. So why would you pick hospice instead of palliative care? Palliative care is office and hospital based and still in the realm of focusing on potential treatments and possible rehab. It is centered on alleviating symptoms while the physician, patient and/or the family are continuing to pursue live-extending treatments. Hospice, on the other hand, is defined by the expected shorter term lifespan of six months or less. Clearly, many patients live longer than the six months since none of us has the ability to fully forecast disease progression, but it is the most educated assessment possible. By Medicare guidelines, hospice patients must meet the six month life expectancy estimate and also be ready to no longer continue in the treatment phase of disease management. In other words, no more chemo, radiation or interventional testing. "Yes, but I have heard of patients in hospice who continue to get blood transfusions or other care." So true. On a case by case basis, hospice does, at times, administer transfusions -for comfort. Or schedule a paracentesis, or do some palliative radiation for pain management. But in a general sense, when a patient enters hospice, they are weary of the treatment phase and mostly want to be at home to receive care from the team that includes a nurse, nurses' aides, spiritual care and social workers. Some hospices have a Hospice House and all have agreements with long term care facilities where their patients can go for more complicated symptom management or for respite care when family members becomes exhausted. Roughly 75% of hospice patients receive their care exclusively at home-whatever that "home" definition is-but from time to time it is important that they be transported to a more specialized facility when home-based care can no longer meet their symptom management needs related to pain, dyspnea, agitation, restlessness, etc. As we finished our conversation, I could see the patient and his wife relax a bit. While hospice is never a welcomed development in the course of treatment, it can bring some peace and resolution to the turmoil of months of difficult decisions. I shook hands with the patient and his wife, and we made an appointment to meet the next day to do the hospice admission at their home. With a smile and a wave, I pulled the door closed behind me.
  20. jeastridge

    A Day in the Life of a Hospice Nurse

    I slung my computer bag over my shoulder and pondered the question one of my nurse colleagues who worked at the hospital asked me. She wondered what my typical day was like. I wanted to laugh because "typical day" and "nursing" probably don't fit in the same sentence. As I headed around to the back door of Mrs. J's house, the familiar gravel path crunched under my shoes. I knocked on the screen door and heard Mrs. J's daughter calling me to come on in. Mrs. J was in the den in the hospital bed, a real change from my previous visits when she had been able to get to the kitchen table and sip on her coffee while we talked. "How was the yard sale?" I smiled at her as I took her hand in mine, feeling for her pulse. She had planned for weeks to have a big sale "so my kids won't have to do it." She smiled weakly at me, and said, "It went good. Got rid of a bunch of junk. I feel better about that." Then her expression changed to one of determination as she said, "I'm all set to go now." I had been visiting Mrs. J for several months as she experienced a slow decline from her metastatic breast cancer. With her pain well managed, she had been able to continue to do many things she wanted to do: attend a family reunion, take her granddaughter back to school shopping, and watch her youngest daughter's pregnancy blossom. Her weakness, fatigue and shortness of breath had gradually become worse and now it was apparent that the final days were near. I tended to her needs, talked at length with her daughter and made sure everyone's questions were addressed. When I got back to my car and finished up charting my visit, I looked ahead at the rest of the day-I had four more patients to see to try to wrap things up by my 4:30. I made some mental calculations about distance and priorities-always seeing the most needy first and those in institutions later in the day. I thought some more about my friend's question. How could I tell her what a hospice nurse really does? Some of it might really surprise her! Hospice nurses don't generally go from one actively dying patient to another Often, a hospice nurse, (also known as a Hospice Case Manager) spends her day seeing a series of patients that she knows, some of them for several months and in different stages of their disease. When a decline is gradual, patients meet the criteria of having a six month life expectancy but some of them live a little longer than that and some much less. Many hospice patients stay in the home setting the entire time they are in hospice. If there are symptom management issues they may have to go to a facility, such as a hospice house or a nursing home for a short period of time, always with the goal of going back to the home setting. Hospice nurses focuses heavily and teaching and providing emotional and spiritual support While there can be many technical interventions in the home: pain pumps, pleur-x catheters, dressing changes, wound management-these are not the focus of care but instead are tools to help promote comfort while dying. More interventional monitoring such as blood work, X-rays, scans, IVs and even pulse oximetry loose the center stage presence they occupy during the treatment phase of the disease process. In the home, families and patients are a lot more in control As hospice nurses we learn that we are there to provide the tools and the education but we do not force our way on the patient. From the very beginning, even during the admission visit, we tell patients that we are there to serve them; we want to help them have what they need in the home; we want them to know how they can call us and that we will come; but we spend much time teaching them how to respond to a variety of problems that might potentially come up. Being in our patient's home also puts a responsibility on them and the family in terms of agreeing to use their medications as prescribed. In these days of prescription medication abuse, we lay out clearly how the medications are to be given and then we explain that we will count meds at each visit to ensure they have an adequate supply. Home hospice nurses visit patients at home wherever home might be That can include nursing homes, assisted living facilities, group homes, retirement centers, apartments and regular homes that run the gambit from very modest to thoroughly grand. A regular skilled nursing visit can take less than an hour Or continue for several hours, depending on patient need. If there are serious symptom management issues then the nurse will often stay to make sure the patient is more comfortable and that proper interventions are put in place. All the "other stuff" takes up lots of time As in other nursing work, hospice nursing is heavily dependent on careful documentation, communication and one other factor-travel. In these days of bluetooth hands free cell phones, some of the talking to doctor's offices and home base can get done in the car, but making sure everyone is on the same page can take up a good part of each day.Knowing who to call and when to call are integral parts of becoming an expert in the field. In addition to daily communication, each week hospice nurses participate in Interdisciplinary Team meetings (IDT), a time when social workers, chaplains, administration, doctors and even families share information and work together to coordinate care. And of course, there is on call time. Most full time hospice nurses take some call, often scheduled once a week, an addition to a full schedule that can sometimes be difficult to cope with. As I backed down Mrs. J's driveway, I carried some sadness with me. But I also felt a sense of accomplishment and peace because I knew that our team had done what we could to help Mrs. J and her family cope with and be prepared for this time of transition.
  21. jeastridge

    The Unpredictable Work of Dying

    "How long will it be?" my patient asked at the end of the admission process to hospice. She whispered the question as I leaned over to say good-bye. Hoarse because of recent radiation to her throat cancer, she struggled to gasp out the question. I squeezed her hand and told her the honest truth, "I don't know, but I do know this: we will be honest with you and let you know when we see changes that could indicate that the time is closer." Emma seemed satisfied with the words I offered and by the honesty they conveyed. After all, being straightforward with compassion is a gift that hospice can offer their patients, a gift that is muffled in layers of treatment and uncertainty through much of the diagnosis and illness stage of terminal disease. I came back to see Emma about 10 days later for a prn visit. I found her much changed and only semi-conscious. Unable to speak, she looked pleadingly at me and her eyes voiced the anguish that we could only dimly perceive. Answering her unspoken question, I whispered into her ear, "It won't be very long now. We are with you. Your family is here. How can I help you now?" She almost imperceptibly shook her head and looked toward the wall, closing her eyes. But things did not proceed smoothly for Emma. Her primary nurse shared with me that she lingered on much longer than expected, barely breathing, not eating or drinking for 10 more days. The family, exhausted, kept asking us why it was taking so long? "What can we do to help her?" We continued to medicate her on a regular basis and we walked down that road with her, so we felt fairly confident that she wasn't suffering a lot of pain, but there is no denying, however much we wish it weren't so, that lingering for a long time at the point of death involves suffering for everyone involved-the patient, the family and yes, even the nurses. If you take a poll of the people around you and ask them about their "ideal" way to die, you will likely get a variety of answers but probably one main theme: almost everyone wants to "die in their sleep" or "just not wake up one morning." While these visions are understandable and probably consistent with the normal human desire to evade suffering and pain, they do not often mesh with the reality that we find as nurses. Dying can be hard. It can take time and work. The process can be painful for everyone involved, leaving the survivors with at least extreme fatigue and often with burdens of guilt, sometimes akin to PTSD. How can we help people the dying and their families survive an unpredictable process with a certain outcome? Honesty As nurses dealing with the dying, compassionate honesty is key. Notice that "the blunt truth" is not the same thing as "compassionate honesty." Telling someone the potentially difficult details of what lies ahead is more akin to punishment than help. But telling someone what we do know, as it becomes evident, can be helpful. Some patients don't want to talk about any of the process and we must respect and honor that. Some want more certainty than we can honestly offer and we have to tell them that, too. But hospice does have the great benefit of helping all involved to be on the same page with what is happening, especially as the patient transitions into active dying. Offer hope As long as there is life, there is hope. Talking about hope is not the same thing as proposing "false hope" which can be defined at "pie in the sky" mentality. Hope can mean a lot of different things: hope that today will be a good day; hope that a loved one will call; hope that the pain will be less on the new schedule. There is always something to look at with a hopeful attitude. Educate (as desired by patient and family) As hospice nurses, provide general info about the dying process. Some hospice agencies have booklets that they give patients, to be read as desired, if desired. The booklets talk about specifics related to the dying process and also about potentially helpful interventions to promote comfort. Education involves planning ahead as much a possible. Asking the patient and family about their goals at the end of life is essential in helping everyone involved face the impending change. Having the POST forms signed, the designated medical power of attorney-all of this can add peace and a more settled atmosphere. Monitor word choice carefully Author K. Ann Smith writes in her blog post, "Didn't they understand that I was tortured by the word "fighting"? They said "your mom is fighting" and I heard "Your mom is fighting to live while you've agreed to withhold food and water so she'll die." They said "fighting" and I translated that one word into, "Your mom is fighting, but you're furious because she isn't dying fast enough." They said "fighting" and I felt they were asking me "why aren't you helping your mother?" [KevinMD.com 8/8/16] As we accompany the dying and their families, we have a sacred responsibility to be empathetic and compassionate, especially in our word choices. When death does not come on our pre-determined personal schedule or as expected by the law of averages, we have to hold our feelings very carefully in check, not allowing any sense of failure to leak out onto the situation. Part of that is not being too specific about what to expect, as patients and families may put more stock in our specific words than we recognize. Instead we err on the side of pulling back the long train of words that threaten to erupt from our mouths, words born of long hours of experience. Yes, we do know a lot, but we don't know everything. Only God knows how long it will be for sure. Acknowledge that dying can be hard work The image of our loved one saying their final words and gently closing their eyes to pass on is appealing but rarely matches reality. While premature death can be much too sudden-here one breath and gone the next-the more common transition to death involves days and sometimes even months of gradual decline. Death can be hard work.The final accomplishment of our lives-the process of dying-is rarely effortless and seems to have times when the mystery of the beyond speaks loudly into a space that we wish we could control. In the end, mystery prevails and we submit to it and do our best to work with what we know, in the here and now, helping our patients ease on in their time and in their way.
  22. jenakjar

    I Owe It To My Dad

    I remember the day it all started. It was a simple index card with steps carefully written by my mother. Chronological ordered words instructed my 79-year old father on how to start his car and put it into drive. Those simple routine steps were fading away in his mind. For over 35 years, he had hopped in his car, 6 days a week, to drive to his small retail men's clothing store for business. Once known names were slowly disappearing. Newly acquired memories were gone almost as quickly as they were experienced. I questioned the safety of my father driving to work when he needed written instructions to turn over the engine and put it into gear, but he was not willing to relinquish his keys or his freedom just yet. However, soon thereafter, my dad became very ill with intractable diarrhea. He quickly became confused and unable to function in his weakened dehydrated state. His attempt to leave the house for work ended up with a trip to the emergency department. The following days were a chaotic blur of into the emergency department, back home, back to the emergency department, diagnosis of clostridium difficile, a cholecystectomy, saddle pulmonary embolism, and ulcerative colitis. Finally, he was admitted to the hospital with a team of physicians frantically attempting to balance his precarious state of bleeding and clotting. I spent my days communicating with the clinicians about his bleeding bowel and his dropping hematocrit. I was, at that time, a weekend quarterback of nursing of sorts. I had always loved medicine but I had never pursued it educationally. Now, I was the designated medical intermediary for my father. A colonoscopy would confirm an advanced state of ulcerative colitis with purulent and necrotic tissues in need of emergency excision. Post-operatively, an ileostomy saved my father's life. As he hovered in and out of consciousness on a ventilator, I hovered up and down the hospital halls praying for his life to be extended. In those dark, bleak hours and days and weeks that followed, I grappled with the meaning not only of my father's life but the purpose of my own. As a divorced mother of a small child, I lived with my parents and became the caregiver, along with my mother, to my father. Nursing him back to health drew me further into the path I would follow going forward. Several years later I graduated in nursing and became a registered nurse. My love for my dad certainly influenced my decision to change my course in life towards nursing. Nursing was an extension from my home into the workplace. The twelve years I was blessed to care for my dad and his many varied physiological challenges were the richest nursing experiences I ever had. Whether it was caring for his ileostomy, healing a wound, stabilizing him after an epileptic episode, or reminding him at 3:00 a.m. it was not time to go to Burger King, it formed my soul as a nurse. I would never see the world the same again. I served as a hospice nurse for several years but in the final months, days, and weaning hours of my father's life, any preconceived notions I had about nursing and life were radically transformed. All the studying, all the early morning clinical rotations, all the late nights, and all the migraines came together in that moment. I sat next to him those final 48 hours as his life, as he wavered between this world and the next. I held his hand, I washed his feet, and I wiped his brow. I administered palliative medications to soothe his breathing and his terminal agitation. I cared for him as a nurse; I spoke to him and I loved him as a daughter and as a best friend. His final breath forever altered who I was as a person and as a nurse. I would never see another patient simply as a patient, but as a friend, as a person loved by so many. Nursing has taught me so many life lessons, but the greatest lesson of all, compassion, I owe it to my Dad.
  23. The sky was a clear and bright blue as I turned the wheel of my truck onto the small dirt road. The trees were not yet turning from green to gold but the air held a smell of changing seasons. As I pulled through the circular drive a little lady with white hair piled in a curly bun and wearing a bright red gingham apron stepped out on the porch to greet me. She was drying her hands on the bottom of her apron and coming down the wide steps toward me as I reached for my nursing bag and paperwork. "Oh, you must be our nurse! We are so happy you're here!" I remember her saying. She reached me and engulfed me in a generous hug and I noticed she smelled of fresh coffee and pie. As a hospice nurse, I'd never been greeted with such warmth and happiness. Usually, when people needed me they were grief-stricken, frightened, sometimes angry, and often overwhelmed. They counted on me to bring peace, compassion, wisdom, and relief. They saw me as a professional who could help them, but this soft and smiling grandmother had greeted me like a long-lost friend. "Come in! Come in," she said with a wide smile as she looped her arm through mine and escorted me up the stairs and into their little farmhouse. The smell of still warm bread wafted through the air and with it I noticed a tinge of cherry pipe tobacco. "Papa, look and see who I found!" She called, and around the corner came a tall lean man wearing faded but pressed denim overalls and a red flannel shirt. His hair was snowy white and his eyes a bright blue that crinkled at the corners as he smiled at me. Across his cheekbones and under his nose I noticed the clear tubing and the nasal cannula.He greeted me as warmly as his wife had and asked if I'd like some pie and coffee. Before I'd even had a chance to respond I was pointed to the table where a steaming cup of coffee had been set beside a slice of peach pie. I have to tell you that it was positively delectable! Sweet plump peaches suspended in a velvety filling. It was so good I closed my eyes as I took the first bite. As we sat around their table and I got to know them I almost forgot why I was there. They, (let's call them Papa and Ma) had been married over sixty years and he had raised cattle and cotton his whole life. Before I'd even put my stethoscope to his chest they owned a large piece of my heart and I was a goner. Over the course of the next several months, Papa's health seemed to improve. That often happens when hospice gets involved. I think it is an absolute tribute to what a positive difference we as nurses make in the lives of our patients. I remember walking through the door one day as they sat finishing their breakfast and Ma told me she was glad I was there because she needed help setting Papa straight that he could not go to town and have barbecue and take a drive to the lake! I agreed that he should not be driving to which Papa informed me that their grandson had offered to do that. After a thorough assessment and a long conversation, I told him he was a hospice patient and not a hostage and I thought the outing might be good but suggested he choose one or the other to conserve his energy. A compromise was reached, I made arrangements for a portable oxygen concentrator, and his grandson picked up the barbecue for them to enjoy at home before taking a drive. On another occasion, I'd walked in as they were having a conversation about what heaven was like. As I filled his pill box and checked on supplies I was soon roped into the debate. Ma spoke long and eloquently about flowers and golden streets and being greeted by loved ones long since missed. I still smile at the memory of her shining eyes and her rosy cheeks as she spoke with wonder and delight as to what she thought was waiting. Pa chewed on his empty pipe as he listened to all his wife had to say on the matter. (I'd insisted he give up his smoking of it with a long lecture of smoking and oxygen use). When she was done she sat back in her kitchen chair, cupping her coffee cup and wearing a satisfied smile. Papa said he didn't necessarily disagree but that he certainly had his own idea! He stated simply and matter-of-factly that he thought right before it was time for you to "cross over," the heavens would roll back like a scroll and you'd hear the angels singing and you'd see "all of glory" revealed before your eyes. He told us that he felt sure he would "see the Lord" and in the "blink of an eye" he'd be there in heaven with him and that would be that. I realized when they were each done speaking that they were both looking straight at me to settle the matter! I don't recall exactly what I said but it was something akin to how I didn't know for sure but I knew one day the mystery would be solved. My visits stretched from fall through winter and deep into the spring and one day, just as I knew she would, Ma called the answering servicing requesting they tell me to come right away. I was on call so I had clothes laid out just in case and in less than ten minutes I was on my way. As I arrived it seemed every light in the house was burning bright and Pa's sweet speckled mutt met me on the porch. He looked up at me with what seemed like solemn eyes. The "wap wap" of his tail was slow and soft instead of its usual happy and quick. Opening the wooden screen door I heard Ma's slippered footsteps coming down the hall. She motioned for me to come back to their bedroom where Pa lay silently and labored slightly for breath. As I started my assessment I asked about level of pain and all the normal things any hospice nurse would ask. I noted the marked mottling of his skin from his knees to his toes and observed that his fingertips also bore a definite bluish tone. As I took care of his physical needs Ma asked me to pray for them and then she busied herself making a pot of coffee and rolling out biscuit dough. I stayed beside my much-loved patient, constantly assessing, constantly keeping watch for any discomfort or any need. The house soon filled with sons and older grandchildren. One by one or a few at a time they came to the bedside of the man they all loved and respected deeply. Some wept quietly, some were stoic, all of them kissed his cheek or forehead or hand. I'd just finished a set of vital signs and knew his life on this side of heaven was about to come to a close so I stepped into the kitchen and motioned for Ma to come to the bedside. She and I had been sitting together for the last several hours and she'd just stepped out of the room to stretch her legs and refill her coffee cup. Entering the room he seemed to be peacefully resting but when Ma reached to stroke his hand he began to whisper something over and over. She was leaned over as close as she could get and I watched a tear roll down her cheek as she told me she could not quite make out what he was saying. She moved over to suggest I lean in and as he repeated the words over and over it was hard for me to make sense of them too. Suddenly I realized what he was saying and as the recognition came my tears began to spill one after the other from my eyes. "It's true," he whispered, "it's true, it's true, it's true..." the words came over and over. "It's true," I said as I looked from him to Ma. She bent and rested her cheek on his and as her tears fell across both of their faces she said, "Heaven? It's true about heaven?" To which we both saw the corners of his mouth turn slightly up into a weak smile. After Papa's funeral, I made a stop to check in on Ma. She was doing well and of course, poured me a cup of coffee and cut me a slice of pie. We drank from our cups and she told me that she would be meeting with a realtor about maybe selling their land and how their oldest son wanted her to move closer to him. It was a good visit and afterward she walked me to the porch and as I turned to leave she asked me what I thought about Papa whispering about it being true over and over. She was wondering if I thought he was telling her, it's true-you were right, or did I think he was saying, It's true-he was right? I hugged her and smiled and told her that I didn't know but either way it sounded pretty wonderful. So often it is easy to see our patients as a to-do list. We think of the IV that has to be restarted, the labs that must be drawn, the antibiotic that needs to be hung, and the dressing that needs to be changed. As nurses, our lists can seem endless and our work thankless. I know there have probably been more shifts where I felt that way rather than feeling a human to human connection. I never wanted to be a hospice nurse. Babies and pediatrics and education are my nursing loves. My jam, as my millennial children would say. How I ended up in hospice is still kind of a mystery to me but the years I practiced in that specialty made me a better nurse and grew me as a person. I've cried buckets of tears over my patients-young and old-but I never let it interfere with my first priority which was safe, compassionate, medical care. There is a fine line there, yes, but I urge you to never stop allowing yourself to be human. Keep an open mind to your area of practice or specialty and an open heart to your very human patients. Who knows, you might have a Papa and Ma just waiting for the touch of your hand and the knowledge you own to make their lives better.
  24. There is huge support for the recent case in the news about Brittany Maynard who recently took her own life rather than letting cancer take it from her in its own time. While many people believe that what Brittany did was a good and decent thing, a question remains: If the only way to die with dignity is to take your own life, what does it mean if you don't? As a hospice nurse, I believe all of my patients die with dignity. They die with dignity because they are human persons, with the dignity and worth all human persons deserve. I certainly can speak for the fact that they suffer, that they decline, that they need help and support of others, but that does not exclude the fact that they have dignity. Nor does it diminish their honor that they choose to let nature take its course rather than letting a pharmaceutical cocktail end it for them. It is my hope that no one believes that there is nothing to live for if you have a terminal disease. I hope all my patients know that. Life isn't always about being a perfect person, without sickness or debility. Steven Hawkings is an excellent example of this, although severely debilitated, and having a terminal illness, he continues to contribute greatly to knowledge, to science, and to many people who care deeply for him as a person. Being sick or being terminal doesn't have to mean you have no quality of life. Not knowing what Brittany Maynard was told about her condition, I can only hope that she was given the choice to continue life with hospice or palliative care. Such care can give patients quality of life they did not know they could achieve with a terminal or severe illness. Further, although a person may feel they don't want to live with sickness or debility, what they really may be feeling is that there is no hope, which is never true for anyone. They also may not understand or be informed that the things they fear may not happen at all. Often, health professionals opt to be totally honest with patients and let them know "worst case scenario" and while honesty is generally the best policy, sometimes too much information does a disservice to a vulnerable person. All of us know what happens when we look up diseases or illness on the internet: we learn things we never wanted to know or we learn things that aren't even close to accurate. Someone who has just learned they are terminally ill is someone who needs information but they also need support and at the end of life, one of the best supports is knowing that there is help no matter how dismal things seem. With hospice or palliative care, many patients realize that their symptoms can be controlled and managed and they can go on living and enjoying each day. It is beyond doubt that most people given a terminal diagnosis fear not only death, but being a burden on others. With supportive care from hospice many of these concerns are ameliorated but a patient doesn't know that if no one tells them. So before we start to think that the only way to die with dignity is to end a life, let's make sure we offer our patients every option for end of life care we can. Hospice and palliative care can make so much difference and give hope to those who may feel that they have no choices left. Let's make sure that every patient dies with the dignity of end of life care, given by health workers who believe that no one death is less dignified than others.
  25. anon456

    The Hardest Day, The Happiest Day

    President's day. I had worked the night before and was just getting up in time for the kids to get out of school. I got the phone call that changed my life forever. I answered it to hear hysterical crying. At first, I could not understand what she was saying, just crying. Then my stepmother was able to form enough words to say, "Your Daddy is on the ambulance to the hospital. He did not have a heartbeat when they found him!" It took a few tries for her to be able to say the name of the hospital. Dad had severe asthma and a heart condition. Lately, he had been feeling worse and talking about making an appointment with a pulmonologist. Just then the kids came in from school and I told them, "Grandpa's sick! I need to run!" and I jumped into the car and headed for the hospital. I called my husband on the way to let him know and he rushed home to meet the kids. It seemed like forever before I got to the hospital. Along the way, my step-mother, who was across town and stuck in traffic, called to ask if I was there yet. When I arrived and ran into the ED I told them my dad's name. I was asked to have a seat in the lobby. A few minutes later a social worker and chaplain rounded the corner. I knew this was not good. I braced myself and they asked if I was Allen's daughter. I said yes and they asked me to come back to a conference room. They said the doctor would be in shortly to talk to me. I knew it was very very bad and my heart started to crack and break slowly. My step-mom was led into the room and we both gripped each other in a tight hug and I felt the river of fear and grief pour out of me, and we sobbed. The doctor finally came in and introduced himself. He looked shaken. He said that when the paramedics found my dad at home he was without a pulse. They performed CPR in the ambulance but were unable to intubate. When he got to the hospital he had a heartbeat back but it came and went several times. He said my dad was the hardest intubation he had ever done in his career. They were transferring my dad to a heart hospital nearby. We thanked the doctor and drove separately to the heart hospital about 6 miles away and ran up to CVICU where my dad was supposed to be. But when I got there I was told he was still in the ED. Ran back down to ED and I was led back to a room where my father lay sprawled out on a gurney, dusky and motionless. They had just performed another code and asked if we wanted to continue to code him. My step-mother said yes and she held his hand cried with her head on her chest. I learned later that he had coded an unbelievable eleven times. I could not believe he was able to be stabilized. The skill of the medical team was amazing. They felt he had suffered an asthma attack or anaphylactic reaction or both. They finally were able to get my father upstairs to the CVICU. They told us to wait out in the lobby. A chaplain arrived and asked if we wanted to pray. I am not a very religious person but my step-mom is, so we prayed. I found comfort in the words as tears poured down my face. My step-mom prayed for a miracle. I prayed that I would be strong enough to get through this and get her through this too. They put him in the big room at the end of the hall. When we went to see him he did not look like my dad at all. As a nurse who was trained in the ICU before transferring to step-down, I was familiar with the breathing tube, vent, a-line, and numerous drips. What I was not ready for was to see my dad under all that. He was wrapped in cooling blankets and they were going to try to cool him down in order to save his brain. My step-mother said he had expressed to her once that if he had a situation like that, he wanted everything possible to be done to save his life. It was my instinct in the ED to tell the doctor I wanted to sign a DNR out of compassion. But honoring my step-mom's wishes and my dad's wishes to her, I stepped back and fully supported whatever decision she made. It was hard to do that. I did not want to lose my dad but I felt so sorry seeing him in that state. Later I was so glad we let dad have a chance. The first twenty-four hours was awful. I kept thinking over and over that this could not be real. To protect myself my mind went into my nurse-role and I focused on his vital signs, drips, and vent settings. At first, they said his lungs were not moving air at all. As the night progressed we started to hear wheezing and by morning his lungs were fulling inflating. His vital signs were remarkably stable, and he was making urine. I knew in my heart that dad, as we knew him, was gone. But he said he wanted everything tried, so for the next 24 hours, we waited while he has cooling therapy that made his body temperature go down to 33 C. Since my schedule was flipped I was wide awake all night, but also the worry and emotional pain kept us both up. We kept vigil by the bedside, tried to talk about things other than my dad. Tried to stay positive. Step-mom refused to eat so a friend who was with us went and got her some food and encouraged her to keep up her strength. She took a few bites and pushed the food away. I also had to make phone calls. My dad's parents are in their 90's and live out of state. I had to tell them what happened, and prepared them for the fact that dad was probably gone. My uncle and his wife arranged to drive the grandparents and they would arrive the following afternoon. I called my husband and told him, and asked that he take care of our girls and try to keep things as normal as possible. On Tuesday morning we were asked to leave the room so he could get a bath and shift change could take place. I looked out the window in the lobby and saw the most beautiful sunrise with pink and orange-colored clouds glowing over the horizon. I took a picture as we waited. After some friends of my step-mom showed up I told her I had to go home and would get some sleep and be back that night. I didn't sleep much. I would close my eyes and see dad. I would remember some funny thing he said and then be jolted back awake by the nightmare of our present situation. When the kids came home I fixed them a quick dinner and had them make a sign for Grandpa to put in his room. At first, they were going to write "Get Well Soon." But I knew in my heart Grandpa was not going to get better. I had them write "We Love You, Grandpa," instead. I did not want to go back into that hospital room. I did not want to face my dad looking like that. But step-mom needed me to be there. I promised I would hold vigil all night if she would try to get some sleep in the recliner. They had started to warm him back up and the process would end the next morning. Then they would try to wake him up. She slept about 2 hours while I watched movies on the computer and tried not to look at dad for too long at a time. Step-mom would get up and hold dad's hand and pray, or plead for him to not leave her. I thought about all the possibilities. What if he did wake up? I knew he would not be nearly the same. I feared that my step-mom would spend the rest of her years caring for him as a total care patient. And dad would face a life of pain and frustration if he was that aware at all. We somehow made it through the second night. In the morning the paralytic was turned off. The nurse called out his name and told him to wake up. No response. Not even a twitch or grimace. His pupils were checked. They remained fixed and dilated. Stepmom said maybe since they had not turned off the pain meds yet, he was just still too sedated. I knew better, but I still had a vision in my head of dad waking up and lifting his head off the be and wondering where the heck he was. It was so easy to imagine. The sedation was turned off. Dad's pupils remained fixed. I shined my own penlight into his big blue unseeing eyes. Nothing. Dad was gone. I called the family with the news as they were coming into town. My aunt stayed with my elderly grandparents while my uncle met me in the hallway. He looked like had aged ten years. I put on my nursing hat and prepared him for what he would see and we went in. By evening dad started to-- how can I describe it-- melt. It was like his face was sagging and his hands and feet were getting more swollen. He was looking less and less like dad. They did an EEG and found no brain activity at all. I feared that step-mother would not make the decision to let dad's body go. I should have been more honest with my feelings to her, but she was so fragile. I did not know that by not telling her my feelings, she felt abandoned by me. I was trying to respect her and not pressure her. She was trying to get my input and guidance. I went home after leaving her with some friends who would stay the night with her. I needed to get out of that room. On Wednesday I sat the kids down and told them that grandpa was very sick and probably going to die. There was no easy way to tell them. I knew they needed closure so I called hospice and asked for some guidance on how to help my girls say goodbye to their grandpa. The grandpa that every week came to their piano lessons and then helped them practice at home. The grandpa who was so proud of them and told them so. Who played their computer games with them, who patiently listened with pleasure, and then told them stories of his childhood which they loved to hear. My youngest cried "How will grandpa know I have finished my piano piece now?" I said, "He will know. He will be with you always." The hospice person said that at age 9 and 12 they were "absolutely" old enough to visit their grandpa and say goodbye. I prepared them as best I could at home. My husband had to drive because I could not see through my tears. Just as we were approaching the hospital it started to snow. This is a miracle because we live in Phoenix, Arizona. It was not just a little bit of snow, it covered the street and cars. The girls got out at the parking lot and held their arms out and spun around and laughed and shrieked. I knew it was Dad trying to cheer up his girls. The next thing that happened was by far the hardest thing I have ever done in my life. Ever. Moms are supposed to protect their kids from pain, to soften the bumps the world gives them. And here I was about to lead them into the room where their beloved grandpa was hooked up to a thousand tubes and wires, his body swollen, his eyes glistening with lubricant and unseeing. The tube in his mouth breathing for him. The other tube draining brownish liquid from his stomach. They saw him and sobbed like I have never heard them sob before. It was such a deep pain. I sobbed because of their pain. My husband had tears spilling over and he had to turn away and cry. We hugged each other and just hurt together. After the tears slowed down I told them it was okay if they wanted to say something to grandpa, and it was also okay if they didn't want to. There was no right or wrong thing to do. My nine-year-old held grandpa's hand. I got a picture of her hands holding his. It is a precious keepsake. It was time to leave. I hated leaving step-mom for a night but I had said my goodbyes to dad. I could not emotionally do it anymore. I had to take care of my kids. A friend offered to stay the night with her. We had a family meeting about what was next. We felt stuck. Dad was still alive in body. We were afraid that step-mom would not be able to let him go. We were afraid to break her or pressure her when she was hurting so much. Again I wish we had communicated better. She called us later and said she was going to donate his organs. I was so proud of her. So relieved and proud and thankful. On Thursday we went back to the hospital. I was not planning to see dad again, but the people we needed to talk to were in the room. I stole a glance at dad and his face had continued to "melt" and his urine was getting darker and he was more swollen. A woman from the donor network met us and said she would be with us through this process. She said it normally took 24 hours or more to prepare for surgery. My step-mom said that was too long, she had made her decision to let dad go and he needed to go sooner. She made some phone calls and found a doctor who offered his time to it that afternoon. We decided together what organs to donate. We decided to donate his organs and skin and eyes but not his bones. It was too much for step-mother to envision his arms and legs being cut into. My aunt and husband were researching funeral homes and went out to check on some. We wanted to bury dad as soon as possible as waiting would be hard on my grandparents. I could not believe that we were making plans to bury my dad. He had been alive just days earlier. As we were waiting for the time to approach, our nurse that day pulled out his ipod and showed us a picture of a beautiful baby boy. He said that was his son, and he had been born with a heart defect. Thanks to an organ donor his son got heart valves that saved his life. He said it was an honor to work with us, to see the other side of the process. He had tears in his eyes and we hugged. It could not have been more perfect of a sign that this was meant to be. At 1:30 PM a nurse from the surgical team came to meet us in the room, said what an honor it was to do this. He had tears in his eyes. A few minutes later the rest of the surgical team came up dressed in green scrubs. They wanted to meet our family. They asked if we wanted any music played for him and we agreed on some music. They took the card I had written to honor my dad before the surgery and said they would read it and have a moment of silence. They let us take our time. A chaplain came and we circled around dad's bed and prayed once last time. I put the girl's "We Love You Grandpa" poster on dad's legs as we left and asked that it stay with dad until the surgery started. It was time. We held each other and slowly walked down to a conference room and I recognized the sound of dad's bed and vent going down the hallway. My dad was now truly gone. We made our ways to our cars and went home. Later that evening we had a family dinner at dad's house. We didn't want the house to be too empty for step-mom to have to bear. She had her mother staying with her, too. Somehow after we knew that dad would be released that day, a weight lifted. We told stories of dad and mostly laughed. We cried a little too, but then someone would come up with another story about dad that lifted us up. Dad was a generous, warm, funny person. There were many stories to go around. In the middle of dinner, the phone rang and I answered it. It was the woman from the donor network. My heart hurt again knowing that dad's body was alone somewhere in a morgue. She said she had good news. They were able to use dad's corneas, and they were able to use his liver! Someone that night was getting the best news of their life thanks to dad. We can donate our time and our money, but only dad got to donate life. There is no greater gift. I went to the main room and told everyone I had an announcement. "Guess what? Someone is getting dad's liver!" We all were overcome with tears again, but happy tears mixed with sad ones. We knew that somewhere out there, a family was thinking of us and thanking us for helping their loved one to have a new chance at life. Somewhere out there was dad's liver making someone better. Dad is still gone. It's now in the wee hours of Friday morning as I write this. I just went through my photos trying to find good ones of dad for the funeral. I found many pictures where he was the one behind the camera. I saw what he saw-- me running high school track when he was my coach. Me playing clarinet in bad. Me holding my newborn baby. Me graduating from nursing school. The kids piano recitals, the photos he sent me because he always takes better pictures than I do. Thanksgiving and Christmas, the whole family except him because he's taking it. And I see a lot of happiness through his point of view. I see how he saw us and how proud of me he was, and how he loved his grandkids. He had a hard life. He had to bury my six-year-old brother. He divorced. He remarried and the last twelve years of his life were his happiest. I feel in some ways he was just starting to live. Tomorrow we will pick out the flower and casket. It will be hard. But tomorrow someone somewhere is getting used to a working liver. Someone else will be able to see clearly through those eyes of Dad's, see their own happy memories. On Tuesday we will go to piano class and dad's car will not be parked outside the teacher's house. But the girls will still have the gift of music from their grandpa. On Thursday I will go back to work on my unit, having grown by living through what they have for days or weeks. And in April my step-mom will celebrate their anniversary and both their birthdays. It will be hard, but what a gift we had in knowing him. At Thanksgiving, we will miss hearing his same jokes over and over and probably tell them ourselves. And by next February dad's liver recipient will be celebrating one year of new life.