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Topics About 'End Of Life'.

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  1. jeastridge

    How Much Time Do I Have?

    How much time? She looked up at me with pleading eyes, her head resting on a freshly laundered pillow case and her hair, still damp, laid out against the white expanse to dry. Her voice was firm as she asked the question that was on her mind. Taking a deep breath of the oxygen that ran to her nose she said, "How much time do I have?" She was not old. Certainly not old enough to die. Just in her late 60's, recently a new grandmother again, she found herself with much to live for and yet with each deep cough she knew the lung cancer was getting ahead of her. As I wrapped up my hospice visit, I sat back down beside her, to focus in on her question and to carefully think through just what to say-and what not to say. Whether you work in the emergency room, in a doctor's office, on a med-surg unit or hospice-whatever your field is-the critical question about how much time remains comes up from time to time. How we answer or don't answer that question can have a profound impact on our patient's well-being. Admittedly, with hospice patients there is at least some expectation, given clinical parameters, that the patient has six months or less to live. But that time frame varies widely and despite our best efforts to meet guidelines that outline expected decline, each person is an individual case where death can creep up unexpectedly or sit coyly in the background long beyond its expected arrival. Answering this particular question well requires sensitivity, knowledge, and honesty. When any of us faces a shortened life-span, we want to know what to expect. Terminal illness is accompanied by a host of unknowables. Measuring the time left is difficult because of each person's individual disease and progression. We expect the lowered immunity, potential for infections and complications that come along but those are often countered by deep wells of resourcefulness in the individual, and a love and zest for life that triumphs over all expectations. So what do you say? Probably the #1 answer to that question is, "I don't know" While this is technically and existentially true, it can be an easy way out for us as professionals. I think a more complete answer involves telling the patient that while we cannot predict with certainty, we pledge ourselves to let them know if we see a change that would indicate the time is near. We can add to that teaching about what generally happens as the time of death nears: increased fatigue, loss of appetite, less time being alert and a gradual shut down of body systems.For family members, there are many books that describe in more details the dying process and what to expect. "What do you think about how long it will be?" A second way to address the question involves reflecting it back to them and asking them what they have been told, what they are most concerned about, what is bothering them in particular at this time. This may sound like an evasive maneuver, but it truly does help to clarify the issue, and often what we are hearing is not what they are really asking. When it comes to death, most of us don't want to know specifics as much as functionality-how long will have have with my loved ones? Will I be able to talk/communicate? Will I be in pain? As nurses, we cannot promise total freedom from pain or discomfort but we can offer our commitment to work hard to alleviate symptoms to the best of our ability in conjunction with our health care team. "Ask you doctor" This is certainly not recommended phrasing, but sometimes, when all the tests are not in, when the biopsy is still pending, when treatment options are uncertain, we do the patient a disservice by trying to address this end of life question too directly. It can be especially true when dear Aunt Sue has breast cancer and so-and-so died of breast cancer and "I just know I am going to die of it too." The underlying tone of the premature question is one of fear and panic. Sometimes, what is most helpful to to ask the patient (or relative) to wait until all the tests are in, the treatment options are laid out, then resume the discussion. It is not helpful to lay awake at night worrying about something that hasn't happened and may never happen. In these cases, our role becomes one of comforter, of listener, and of encourager. Try to be as honest as possible And, no, this does not mean laying on the unvarnished truth with a heavy stroke. There is no such thing as "false hope." Hope is hope and we all need it to continue to survive for even a day or an hour. During admissions, I often tell patients, "Coming into hospice does not mean that you have given up. It means, instead, that modern medical science doesn't have any great treatment options to offer you and your family at this time. But miracles do happen and they can happen even in the context of hospice." This is completely true and I have seen patients "graduate" from hospice as their condition improves. Honesty is the best policy always and at this critical juncture, people really need someone who will maintain eye contact, extend a caring hand, offer a hug, and say truthfully, "I don't really know how long this journey will be. But I do pledge that our team will walk with you through this time and do everything that we can to help you on the journey. We will be with you." Those words can cut to the heart of the fear of being left alone, of suffering without relief. We always need one another, but when it comes to dying, the gift of presence is the best gift their is. I tried to address my patient's question as honestly as possible. In the course of the conversation, I found out that her new grand baby was due to come for a visit in a week. Her question centered on wondering if she would be here then, and more importantly, would she be able to hold the little one. I told her we would do our best to help her marshal her strength for that event and that we would do everything we could to help her be alert enough to enjoy some grandmother time. What about you? Have you found some particular wording that helps you talk with patients about this difficult topic? How do you answer the question, "How much time do I have?"
  2. vmbennett

    The Patient was a Retired Nurse

    The author was being oriented in intensive care units when she was assigned to her exemplary case. This case involved an elderly ventilated lady that was alert and oriented, capable of making her own decisions and facing the end of life decisions. The elderly lady had several comorbidities, including respiratory distress, diabetes, congestive heart failure, and a history of a stroke. The patient knew that if we took the ventilator tube out of her mouth, she would not be able to withstand life very long. She was a retired nurse and understood the ramifications and was prepared for the outcome. ComorbiditiesThe patient’s respiratory distress had developed into acute respiratory distress syndrome (ARDS). Additionally, she had congestive heart failure, which causes fluid to increase around the heart, causing it to pump inefficiently. These symptoms made it harder to extubate this patient. The elderly patient also had diabetes and a history of a stroke. Although her diabetes was being controlled based on an A1C of six, and she had no deficits from a previous stoke, she was ready to see her husband again. The combined symptoms from her disorders and with the blessing of her family, this patient decided to be extubated. The pathophysiology progress of ARDS was explained by palliative care as neutrophil activation due to inflammation, which is significant in the pathogenesis of ARDS. The patient and the family members verbally acknowledged the possibilities of multiple organ failure, pulmonary hypertension, and a high mortality rate. Additionally, palliative care explained that there are no single biomarkers to predict the outcome of ARDS in an elderly patient, but numerous different pathways are involved in the development, which increases the risks for a poor outcome at an advanced age. Although the family members were not agreeable with the patient's decisions and very tearful, they were all respectful. Patient's JourneyThe journey involved a retired ventilated nurse that was alert and oriented, capable of making her own decisions and facing the end of life decisions. She was writing messages on our communication board and texting with her phone to communicate. She had been in intensive care for several days, and we were unable to wean her from the ventilator during the daily spontaneous breathing trials. She had lost her husband several years earlier from cancer and wanted to be with him. Palliative care had been consulted and met with the patient and the family members. The patient kept her dignity, which included autonomy and control over the daily activities and circumstances. The patient's self-determination allowed her to feel that life still had worth and importance despite the current circumstances. The patient understood the meaning of comfort care and withdrawing care. She knew that if we took the ventilator tube out of her mouth, she would not be able to withstand life very long. She understood the ramifications and was prepared for the outcome. To the author, this was a well-educated elderly lady with independence and dignity. The patient kept her dignity, which included autonomy and control over the daily activities and circumstances. The patient's self-determination allowed her to feel that life still had worth and importance despite the current circumstances. The author observed the elderly lady facing the end of life decisions had identified with her illness, age, and comorbidities. The cause of her death would be by her hand and decisions. The patient would determine the timeline, and the consequences were that she got to meet her husband again. Other consequences the patient thought about was leaving her children and grandchildren, but the patient expressed a weary life and determination to be pain-free again. The treatment the patient chose was comfort care to relieve her suffering. After caring for this patient on many occasions, becoming a confidant to the family members and a friend to the patient, we withdrew care. As an orientee, the author was not fully aware of what comfort care meant. The author was instructed to get pain medications from the Omnicell to administer to the patient. As the author administered the medications, the patient's heart rate and respiratory rate began to diminish. As an orientee, this response was alarming, but as an intensive care nurse, composure was vital. At that moment, the author was confused, irritated, and doubted what she had just done as a nurse. We are taught to do no harm. What had just happened? The author had been listening to the palliative care team for days talk about comfort care and peace, but details had not been explained. The author certainly had not expected to be the one pushing the final medication before the patient's last breath. As the author stood there holding the patient's hand, watching the monitor, passing out tissues to the family, and feeling as though she had done something wrong, the patient took her last breath. It was not a sudden death but a peaceful one. This incident made the author doubt her career choice, her faith, and the intention of the medical field. This situation was the most uncomfortable and spiritually confusing event of the author's life. As the author drove home that evening, tears of forgiveness rolled down her cheeks. The author went to the hospital chaplain and the palliative care team for guidance and clarification. The circumstance was explained as holistic care, focusing on psychosocial, psychological, and spiritual characteristics of care for the patient and family. This experience was the author's first experience watching the role of a palliative care team, experiencing grief for someone that the author had not known very long, watching a person pass away, and witnessing a faithful family lose their mother. The family stated that medical treatment would have prolonged their mother's life without offering substantial benefits. Nursing incorporates numerous characteristics of care, including ethical decision making, supporting families and patients through the death and dying process and pain management. It is challenging to teach curricula on empathy, sympathy, the dying process, different healthcare system policies and practices, and the numerous interpretations of end-of-life progressions. As an orientee, effective communication skills from the leaders could have enhanced the experience, built trust, increased knowledge, and diminished career doubt. Provider's Professional RoleA provider’s professional role when dealing with end of life decisions is to listen and discuss the wishes of the patient and family members. It should be routine as providers in a primary care setting to offer a living will/advance directive to every adult patient regardless of their age. Options and choices in the document should be read and explained so that the patient gets a clear understanding. A provider can educate the family and patients on who can sign as a witness, what is involved in decision making, and suggest someone who will respect their wishes. A provider should encourage the patient to discuss this decision with all family members involved before this document is needed. To prevent disagreements during the implementation of living will or advance directive, it is essential to begin the dialogue process concerning the end of life strategies early. A non-crisis situation is an ideal time to have discussions about the end of life. The patient and family members can think clearly, discussing values, and ask questions. When approaching these conversations, the patient should feel safe, heard, and valuable. Autonomy should be given to the patient, and providers must explore cultural aspects and expectations of care with the patient and family. Providing information and education on what to expect, support groups, and discussing needs and expectations with the patient and family are vital. ConclusionAlthough the retired nurse passed away, a positive outcome was accomplished. The patient kept her dignity, which included autonomy and control over the daily activities and circumstances. Her quality of life was maintained until her last breath, and her family experienced a serene and peaceful passing. The patient's choices displayed her self-determination without external influences from her family, and her stress was limited due to managing and adapting to her illness. This patient demonstrated a journey of courage, love, faithfulness, kindness, and consideration. The retired nurse’s life story will forever be described as the author's epiphany in her nursing career and a hero. This encounter taught the author a deeper meaning of compassion, patient autonomy, understanding, and the true meaning of a hero.

    End of life in primary care

    Has anyone read the book Dear Life: A Doctor's Story of Love and Life? I read this recently and it brought to light the idea that we really don't discuss end of life care in family practice. At least not in my program. I recently had a patient in my clinic experience which this topic was brought to life, without giving too many details (HIPAA). Hard discussions with the patient and family had to be done about starting the patient on hospice, the family was not ready to "give up". It was apparent that the provider I was precepting with was uncomfortable with the conversation. I am curious about other's experiences in the family practice setting. Did anyone have specific training in their NP programs on this, more than just a short lecture?
  4. He was an elderly patient, unresponsive and on comfort measures only, when I met him at 8:00am that morning. The staff had guessed based on his current state that he would pass away that evening, or perhaps overnight. I was following a kind and compassionate hospice nurse for the day as part of the class I'm in. She asked if I would like to help assess him, and we got to work. The first thing I noticed was his breathing. I watched his chest. I glanced at my watch. 36 breaths per minute, using accessory muscles, with expiatory wheezes in all lobes. The nurse looked up at me and said gently, "this is not comfortable, let's treat this first". She gave him IV Morphine and Ativan, and we went on to care for several other patients. We returned shortly to reassess him. His son met us in the hallway, and glancing at his father and back to us with anxious eyes, asked "How is he doing?" The nurse explained that we had given him some medication to allow him to breathe more comfortably, and she wanted to see how it was working. The three of us could see the medicine hadn't had much of an effect, so the nurse went to get some additional medication. It wouldn't be necessary. Several seconds after she left the room, the patient stopped working so hard to breathe, and a long period of apnea began. The son's eyes bulged. I ran to the hall and called for the nurse. With her stethoscope on his apical, and my fingers on his pulse, we watched, waited, listened. There were no monitors, just us. A long pause, followed by the nurse's voice, barely above a whisper, "I'm sorry. He's gone." It was 10:17am.The son knelt down and kissed his father's forehead. The patient's wife of 68 years and several other children were on their way there. "Let's get you looking nice for Mom", the son said softly, and walked out of the room. What happened next I wasn't expecting. Before I could begin to perform postmortem care, I began choking back tears. The nurse looked up and asked gently if I was okay. I felt my face flush with embarrassment. I thought to myself that it was not my place to cry over a stranger. To lose composure. I tried to answer her question, but holding back the giant lump of a sob in my throat was the only sound that came out. "First...time. Patient...Death." That was all I could get out, but she knew what I meant. She put her arm around me for a moment and told me it was okay. I rubbed my face for a few seconds and went back to work. I looked down for a profoundly odd moment at the man who was just "there", and was now "gone", and tried to figure out why he's passing had such an impact on me. I had never heard him say a word. Never saw him on a "good day". I didn't even know of his existence until 2 hours before he left this world. I had expected as a part of my training and profession, to feel compassion, to show empathy to the family, to offer comfort. I was not prepared for my own personal emotional breakdown, which followed me home. As I lay in bed that night, I began to realize that it wasn't specifically that man's passing that had upset me so unpredictably. It was a son's agony and tenderness in watching his father leave him behind. It was the love of a man's life, his childhood sweetheart, wanting to be by his side, and arriving 15 minutes too late. It was standing by while a large, loving family walked into a room to reluctantly face the "goodbye" that they didn't know how to say. It was being intimately in the middle of the frailty of life and the finality of death, and feeling like I had no clue as a nursing student, as an outsider, what my place was. I talked with my clinical instructor the next day about my emotional response to everything. I was expecting to hear a cliche of comfort, or the ever popular "it will get easier". Instead, I was touched to hear, "Maggie, your level of control and outward response may change, but if you ever get to a day where your heart doesn't break for the breaking hearts of others, it's time to find another line of work." I still have a long way to go in learning how to remain strong in the face of pain, to offer sincere comfort to people I may barely know, and to understand the profoundly important position of a nurse in standing by a patient's side at life's end. Yesterday was a big step, and I will not forget the man, or his family, who allowed a young nursing student in to begin to figure it out.
  5. This week, the New England Journal of Medicine reported that home is now the most common place Americans die of natural causes. For centuries, death was viewed as a natural process and those dying were cared for at home by family and community members. This changed in the early 1900s when the dying process became more medicalized and most people were in the hospital at the time of death. The current trend reflects the increasing rates of hospice enrollment for services that allow people to die where they want. Study MethodThe authors, Dr.Haider Warraich of the Veterans Affairs Boston Healthcare System and Duke University graduate student Sarah Cross, used government health statistics on natural deaths for the study. Data was analyzed from the Center for Disease Control and Prevent and the National Health Statistics database for deaths in the U.S. from 2003 to 2017, excluding deaths from external causes, such as accidents or homicides. Study FindingsThere were over 35.2 million deaths in the U.S. from 2003 to 2017, excluding deaths from external causes such as accidents. Cardiovascular disease was the leading cause (29.3%), followed by cancer (24.5%), respiratory disease (10.5%), dementia (7.9%) and stroke (5.9%). Where Deaths OccurThe following table compares the findings for where people died in 2007 versus 2013: Place of Death20032017Hospital39.7%29.8%Nursing Facilities23.6%20.8%Home23.8%30.7%Hospice Facilities0.2%8.3%Differences in Who You AreThe data analysis showed differences in place of death according to who you are, with nonwhites being less likely to die at home. According to the National Hospice & Palliative Care Organization (NHPCO), the demographics for Medicare hospice beneficiaries in 2017 are as follows: 83% White8% African American6.4% Hispanic1.2% Asian0.2% Native AmericanSeveral factors play a role in the low utilization of hospice among minorities. These may include: Lack of awareness among patients, families and cliniciansSpiritual and religious beliefs that support preservation of lifeMistrust of the healthcare systemOrganizational factors such as lack of interpreters and minority cliniciansDifferences in DiagnosisData analysis also revealed patients with cancer were more likely to die at home or at a hospice facility. Patients with respiratory disease had the greatest odds of a hospital death and patients with a stroke had the lowest odds of dying at home. The NHPCO published the following diagnosis statistics for Medicare hospice beneficiaries in 2017: Cancer- 30%Heart Disease- 17.6%Dementia- 15.6%Respiratory- 11%Stroke- 9.4%Chronic kidney disease- 2.3%The Need for ConversationsAs nurses, we can advocate for our patients by encouraging conversations with our patients, families and caregivers and the healthcare team about their wishes for end of life care. These conversations are important in helping patients, families and caregivers be on the same page when faced with making difficult decisions. The Institute for Healthcare Improvement sponsors The Conversation Project to help us have conversations around end-of-life issues. A starter toolkit is available online for free download and print. Moving ForwardThe trends identified in the study show that progress is being made in end-of-life care. The authors identified a need for more information about the experience of patients dying at home. Understanding the patient’s experience is critical to the development of policies and services that ensure quality end of life care. Are you surprised by the study findings?Additional information Changes in the Place of Death in the United States NHPCO Facts and Figures
  6. BSN_after_40

    Witness to Goodbye

    Over a few months, we had a rash of cancer patients on our ward. The time period was somewhere in the early 1990s. We had many end-stage patients, most were elderly. But there was one young woman I will never forget. She was in her early 30's. She was married with three small children. She had colorectal cancer. From my recollection, we had admitted her a few times over the previous year as she was receiving chemo and needed IV fluids to rehydrate her from the side effects. Our medical surgical floor had a variety of acute cases, but back then, we served many end-stage patients that probably would have been sent home on hospice or a nursing home today. So it was always interesting and sad at times too. A lot of time was spent on talking with families, explaining end stages choices, and comfort care practices. The young woman, who I will call Brenda, was told that her cancer was not responding to chemo, and to make her final arrangements and decisions. We tried our best to give her family the privacy and time they needed to do this without a bunch of us nurses lurking about while trying to remain supportive. How awful I felt every time I came into her room, trying to make small talk to a woman not much older than I was, knowing she was dying. She was, of course, sad and very quiet. She offered little conversation and limited what she said to simple requests for pain meds or another blanket. Her husband must have been about the same age. He looked pretty tired and washed out. He too was not open to many conversations. Our social worker tried to talk him into incorporating hospice services but he refused, I am sure it was mostly shock and disbelief of the whole situation. The children were confused why Mommy couldn't come home. The oldest was maybe 8 or 9; he knew something was terribly wrong. I would guess the other two children about 5 and 3, with the youngest being a little boy. The younger two children would be trying to play while visiting, only to have everyone else in the room very unresponsive to any happiness or laughter. Many times we would offer them an ice cream treat to try to lighten the mood in the room, soon they got to know which nurse to approach for a treat when they came. Then, the husband started coming up alone. I couldn't help but hear them discussing talking to the children about how serious the situation was, and how they needed to do this soon. Brenda was receiving heavy doses of Morphine to control the pain, and her abdomen was filling with fluid. She was also told the cancer had spread to her liver. As any nurse with some experience caring for end-stage cancer patients can tell you, there is a distinct odor a patient will omit when they are terminal. Even if they are clean and continent, the odor is present. We began to sense this odor in Brenda's room. We knew she was drawing nearer to death. A couple of days later, in the evening, the three children came in with their father to see Brenda. Of course, ice cream was given out to 2 smiling faces, and one not so happy. Seeing their mother so weak and frail was wearing on the oldest, it was very apparent. He tried to hide his tears when we would enter the room. I knew the primary bag was running low, and soon I heard the IV beeping as it was almost empty. When I came in to hang a new one, I really wish it could have waited a few minutes more. I did knock, but unfortunately, I came in during the midst of the big speech Brenda was making to her children. She said, "I am really sick and I am not coming home again guys, I am sorry." The news was too much for the oldest, he knew that she was very ill, but no one had voiced it to him yet. Hearing those words sent him out of the room to the waiting room crying and again trying to shield it from anyone in the hospital ward. The two younger children began to ask innocently "why?" Brenda continued to talk very softly about how she was not going to get better, and God wanted her to come to heaven to be with him. She had such grace to her voice, she knew it could be the last conversation with them and repeated how much she loved them several times. It was a conversation no mother would ever choose to have to make, but she did it very well. I was starting to cry myself as I spiked the bag and tried to punch in the numbers through blurry, tear-filled eyes. Trying to stay focused and professional was very hard; I wanted to be invisible at that moment so I wouldn't take any attention from the situation or my reaction to overhearing that intimate conversation. It was only a few minutes in the room, but it felt like hours. After I left the room, I went down the hallway, ignoring my co-assigned who was trying to tell me she was going on break. I brushed past her and went into the bathroom and cried. I couldn't tell you how long I was in there, but soon my co-assigned came and knocked on the door to ask if I was alright. She had no idea what I had just witnessed. I said, "just give me a few minutes and I will be out." I have gotten used to caring for patients during their last days, cleaning them up and preparing them for the funeral home; it can become too routine. For the case with Brenda, I took it in pretty deeply. Seeing the faces of the ones she was leaving behind, wondering how they were going to handle being without her really haunted me, it still does to some degree today. As nurses, we are expected to care for our clients, regardless of anything. It makes us professional when we can handle anything with a straight face from bones sticking out of the skin to an abused child. But we are not robots; certain things sink into our thick skin, and remain there forever, like a scar. Brenda really sunk into my skin. I guess it was because I too was a young mother at the time. My kids are my whole world, and the thought of leaving them behind at such a tender age would have been too much for me to even imagine, or want to imagine. Brenda went downhill fast after that evening. She lingered for a few more days but was unresponsive. It was so hard to face her family in the room, waiting for her to pass. We kept her clean and comfortable. They knew when we came in every couple of hours to step out without even having to ask them. She was 32 years old when she finally passed. Her husband was alone with her when she took her last breath. He did eventually allow the hospital social worker to help with finding resources to help him and the children adjust to life without her. I wonder about him and the children from time to time.
  7. VivaLasViejas

    Oops, I Did It Again: Dottie

    .....I went and lost my heart to yet another hospice patient. Her name is Dottie, and she is 85 pounds of trouble dressed in a white satin nightgown and an ancient pair of fuzzy pink slippers. She came to our nursing home in early April for a five-day hospice respite, and for reasons known only to her, liked it so much there that she decided to stay put instead of returning to her own apartment. It's OK---she is quite literally a ray of sunshine---but we're still trying to figure out how a LTC facility could possibly be more appealing than one's own home, especially at a time of life when one needs familiar surroundings the most..........or so we believe. In addition to a strong Christian faith, fastidious ways, and a dry wit that keeps us constantly in stitches, Dottie has kidney cancer, which has spread to her lungs and God knows where else. Ever the lady, she coughs bright-red blood into a Kleenex which is folded neatly into fourths for further use; she coughs again, folds again, and finally places the well-used tissue inside a basin which has been lined with plastic bags to facilitate easy disposal of the offending materials. She puts her hair in rollers each evening before bed. She has a picture of Jesus on her nightstand and will tell you to move aside if you happen to be standing in between them. She has a stuffed leopard, Tigger, whom she talks to as if he were a real cat.....much to the amusement of well-intentioned social workers who mistake her sense of humor for dementia. And she honestly wonders why God hasn't come to take her home yet---"I was supposed to be dead by the end of March", she will tell you matter-of-factly. We joke about Him taking so long because He's adding on another couple of rooms to her mansion in Heaven, but I suspect it's because in her dying, she is teaching us how to live. She tells me I am her favorite nurse. I still think she says that to all of the nurses who care for her---not that she needs much care, she is still VERY independent---but her daughter confirmed it one night last week when things were looking bad for her and we thought she was nearing the end. Then the other night, her college-age granddaughter gave me a huge hug as I was going off duty and said, "Now I know why you're Grandma's favorite!" So to say that I've bonded with these people is probably the understatement of the month; and while I still do my best to remain professional and objective, her passage will be one of the toughest I've ever had to endure. The selfish side of me fervently hopes another nurse will be present at that sad hour; but in my heart of hearts I pray I'll be the one to brush her hair and to wipe her brow for the final time. As someone much wiser than I once said: some people come into our lives and quickly go; others leave their footprints on our hearts, and we are never the same. I don't know what awaits this good woman, or her family. I don't even know if I'll see her again on this side of the grave---she's in rough shape, and I'm off-duty for several days. But when I stopped by the other night to let Dottie and the family know that I was going to be off until Saturday, she grasped my hand and held on, looked at me with eyes that were suddenly clear of their drug- and pain-induced fog, and said, "I love you. I mean that." I knew she did. And I meant it when I said "I love you, too". I don't say that to patients, but I say it to my friends all the time. And that, dear reader, is what I love so much about nursing. In spite of all the ugliness and the brokenness we see, every now and again we get to meet one of God's angels, cleverly disguised as a human being, who becomes more to us than just another patient. Dottie is my angel. Who is yours?
  8. TheCommuter

    Death Happens. Get Used To It!

    Here's a truthful horoscope for you: we're all going to die! Before we get started, ask yourselves the following question: What exactly is it about death and dying that disturbs you? Once you pinpoint the source of your fears, keep in mind that other people who once had the same reservations have moved on to become stellar nurses with solid careers in the nursing profession. If you cannot identify what it is about death that makes you fearful, that's also okay. It's probably a sign of our modern times. Let me explain further. In previous generations, death still remained a sad and dreadful time for people who saw family members die. However, the main difference between the past and the present is the fact that death and dying used to be highly visible, very out in the open, expected, and an accepted part of life. During yesteryear, 'passing away' was a personal event when people died at home encircled by loved ones who said their goodbyes. The surviving kinfolk lovingly gave post-mortem care at home in the hours after death. In the modern 21st century, the vast majority of death now occurs in healthcare settings such as hospitals and nursing homes. In other words, death has mostly been removed from intimate home settings, so many people fear what they have not seen. American society now does too efficient a job at hiding death from view and this contributes to making death seemingly creepy to some. Is it bad for you to fear dead bodies?No. Your fears are actually normal due to the society in which you were probably born and raised. Regrettably, death is all around us, and you will need to become acclimated to it if you plan to work in most areas of nursing. Don't worry, because you'll start to become more familiar with death as you get more exposure. You'll actually be relieved by some deaths and saddened over others. Although death will never be easy on you, it will get easier over time. What do you do if a patient dies?It depends on the code status, healthcare setting, and situation. You would immediately call for help if you find a dead or dying patient who is a full code at a hospital. Press that code button, call the rapid response team (if available), lay the patient on a board or hard surface, initiate CPR, and so forth. The sooner you summon assistance, the quicker your patient's room fills with people to help with the resuscitative effort. Patients who have current DNR/DNI orders are dealt with differently. We want to notify family promptly if the patient is in the process of actively dying. In an ideal textbook world, someone would remain with the dying patient until family arrives to ensure the person doesn't die alone. Dying patients who are on hospice or end-of-life care receive comfort care such as frequent turning, bed baths, pain control, oral care, and other measures to maintain dignity before death. When the patient dies, someone makes a pronouncement of death. In the state where I practice nursing, pronouncing death is within the RN's scope of practice. Some families want to spend time with the body, so we give them time for that. What happens with the dead body?The nursing department is usually responsible for post-mortem care such as cleaning the body and rendering the patient fit to be seen by any family members who may want to say goodbyes to their loved one at the bedside. At many hospitals, the nursing department is also assigned the tasks of placing the deceased inside a body bag, attaching toe tag identification, and transporting the body to the morgue. The mere thought of dead bodies might send chills up and down your spine right now, but I assure you that dealing with death will become easier with the passage of time and the accrual of more exposure. After all, death is a natural part of the circle of life. Don't let your fears deter you from nursing.
  9. nursebboop1

    An Honor

    I began my practice as a hospice RN in 1996. At that time the facility was seated in a pocket of the Midwest where "hospice" was not often spoken. I worked for a small hospice that had a census of eight (yes, you read that right-more staff than patients). I had already been a licensed nurse for fifteen years, but I was new to palliative end-of-life care. As a novice in hospice nursing, I brought acquired skills in medical-surgical, psychiatric, obstetrics, triage, and home health in addition to forty-seven years of invaluable life experience. As a newly mentored hospice nurse, I was hungry for information. I soaked up everything I read and heard in a sincere effort to ensure a "good death" for my patients and families. I quickly learned that comfort was physical, emotional, and spiritual and that I would be providing comfort to the patient and family. In the case of Rosa, her family included what little family had survived her and extended to the staff and residents of this facility where she had resided for several years. This would be my "unit of care". This facility is a well known and respected long-term care facility in the Midwest that, at best, tolerated the presence of hospice providing care to their residents. They perceived themselves as being "*THE Experts" *in providing care to their elderly residents until death and we were referred to as the *"Angels of Death*". There didn't seem to be enough boxes of doughnuts or cookies brought in by our agency to allow us to become part of their care team. As I took the chart from the rack that morning I was told that Rosa "was easily agitated and had always been that way...it was just her personality". I then slipped away to a corner behind the nurses' station to gather clinical data from Rosa's chart. Rosa, at over 100 years old, had a myriad of co-morbidities including a history of breast cancer that the family had not elected to treat. She was on several medications which included Tylenol for pain. I entered her dimly lit room and saw a small woman lying in bed who appeared to be sleeping under layers of soft blankets. Within seconds she must've sensed my presence. Her beautiful searching dark eyes were fixed on me while she asked me who I was. As I turned to put my bag down I noticed a framed picture on her nightstand. The eyes looking back at me were the same eyes, but the face decades younger and breathtakingly beautiful. This was one of many pictures sitting around the room that would serve to help me piece together her story. What I learned over time of Rosa's story may seem irrelevant from a nursing perspective to some, but when providing comfort to Rosa at the end of her life the details were essential. Her life as an African American woman from the Midwest who became a famous Parisian fashion model in the early 1900s was rich with stories of success as well as unspeakable tragedy. As she spent her last weeks and days reviewing her life to herself and to others she talked, yelled, laughed, and cried. I listened and learned as she celebrated and also grieved her life. No, she was not hallucinating as some commented. This was important work for her. I had the privilege of witnessing it while not doubting for a second that it was real. Sometimes she was a child talking to her mother. Other times a spoiled young wife demanding attention from her devoted husband. She was reviewing her life. This review was important. She was in a kind of labor many do at the end of life. I was there to listen and support her as best I could--providing comfort. What was a priority for me that day was to begin my plan in getting her physically comfortable so that she could have some quality of life until her story here was over? In my physical assessment, I tried to hide my horror as I looked at the fungating tumor of her left breast. No one had prepared me for what I saw and smelled. I learned later that she had always been a "feisty woman", but the agitation that was reported by staff had to be impacted by this growing cancer that was gnawing away at this once beautiful proud body. The week before I had held an educational in-service at this facility on pain management emphasizing how untreated pain affects the patient emotionally, spiritually, and physically. The staff held onto their old beliefs about morphine--the *M WORD*. "Morphine hastened death" I obtained orders for a low dose of scheduled sub lingual Roxanol. The next day I found the patient asleep, more peaceful. The staff was not open to the possibility that she had been slept deprived due to intractable pain and was getting much-needed rest. I was able to contact a niece, Millie, who met me the next day in the dining room. She helped me understand the stories. Rosa had told me about a fire, and her babies dying--she wasn't hallucinating as others said. I never thought so. Rosa had also smiled with pride as she told me about the young black race car driver whose picture hung in Rosa's room--Rosa's late husband Martin. Millie told me about the impact the couple had made for Negro race car drivers in the early 1900's. I asked what music she enjoyed. Soon Rosa was listening to recorded tapes of Mahalia Jackson singing gospel hymns while propped up on lavender bed pillows. She smiled and relaxed a little more as the spiritual balm soothed her. When it seemed that Rosa had reached a level of physical comfort I obtained orders for a 25 mcg Fentanyl Patch explaining to staff the ease of administration as well as its pain relieving properties. I also knew it would help ensure her comfort because of its steady delivery and that doses would not be held because she was asleep and therefore "not in pain". Over the next month, the Fentanyl was increased to 50mcg. A bowel regimen had also been put in place effectively. I was also able to work with the staff in obtaining orders for wound care that diminished the musky sweet odor coming from her breast tumor keeping her worn satin gowns from being stained by cancer that was bringing her closer to death each day. Vanity had been a part of her glamorous professional life and was no less important now. I hope that at least one staff nurse in that facility was able to provide comfort to her next patient and the next using some of the tools I had been given and passed on during my care of Rosa. Coaching and teaching, I believe, is the essence of nursing. Rosa died in less than a year after I joined her on the last weeks of her journey. She was 102. It seemed to be a "good death". Rosa gave me much more than I gave to her. This was true with most of my hospice patients. Life is a gift. Live today--someday *is* today. Life is a journey full of good and bad. It begins and ends with a process both painful and beautiful. To have been a part of this intimate time with Rosa was truly an honor. (names and places changed)
  10. curlygirlie3

    Caring Vicariously

    It has been two weeks since I found out that my grandmother was in the hospital, ten days since her surgery, five days since I last spoke to her, four days since she moved to hospice, two days since the last time she was awake. For 81 years my grandmother has been a vibrant, healthy woman. Bike riding, swimming, square dancing, crafting, and enjoying time with her boyfriend filled her days in her small Florida retirement community. She must have known that she was sick. Colon cancer does not reach stage IV without a person experiencing symptoms. Waiting, ignoring, and deferring treatment was her choice; I respect that. The difficulty comes with the swiftness of decline - a sudden drop on the carnival ride that leaves one's heart in their throat. As a nurse, as a granddaughter, and as a person I want to be there for her. I want to swab her dry lips, arrange her pillows, and hold her hand. The gulf between me and her bedside is filled with geography, time, money, and obligations to my family and work. The guilt at not being there to care for her is enormous. After all, I work with cancer patients daily. I do all of the things that I want to do for her for strangers. Wait...I do it for strangers. Another family recently experienced a profound loss. I first met Ms. Smith when she was recovering from cancer surgery on my unit. She was beautiful, kind, generous, and funny. She was a gentle soul and I could tell that she had worked with children for most of her life. When I meet patients like her, my fondest hope is that I will never see them again. Don't take that the wrong way. If I don't see them it means that they are doing well. Ms. Smith was readmitted to the unit more times than I can remember with complications from her treatment. Despite losing her hair, appetite, and eventually her physical mobility, she never lost the qualities that made her so special to the staff and so loved by her family. In her last days I was her nurse. I swabbed her lips, I kept her dry, and I gave her medications to keep her comfortable. When she passed I paid my last respects as I placed her in the shroud. Unsurprisingly Ms. Smith has been on my mind for the past two weeks. I believe my memories of caring for her are helping me cope with the fact that I cannot be there for my own grandmother. I also believe that there is a nurse somewhere in Florida who is caring for my grandmother in the same way that he/she would care for their own family member. Providing nursing care for the sick and dying requires a sort of suspended reality. That is not a stranger in that bed, that is your mother, father, grandparent, or child. As a profession, we have a collective belief in the Golden Rule. This belief may be tested daily by the stresses of the job but we must never let it waiver. Somewhere out there a family member is holding out hope that you are treating their loved one as your own. To every nurse that reads this, please keep the belief in the Golden Rule alive because, one day, as I have, you may find yourself in a similar situation.
  11. Justhere

    To Terminate or Not to Terminate

    This is the story of "Baby", the nickname his family gave him so affectionately. He was born in the month of September 1995. He was born with Myotubular Myopathy; he was very "floppy" and had difficulty breathing on his own. He was immediately shipped to the local Children's Hospital and admitted to the NICU. It took the doctor's months to figure out that he had Myotubular Myopathy. When they told his parents the grim prognosis, they painted an ugly picture of his future, one of the hospitals, ventilators, feeding tubes, zero communication, no movement and a very short lifespan of one year. The doctors suggested that he should be taken off the ventilators and allowed to die. His mother asked, "How long will he live off the ventilator?" The reply was "Minutes, hours, days, weeks, months, or even longer, there are no guarantees on how long he will live." After hearing this, his parents knew what they would have to do, his parents told the doctors, "If God wants him, he'll take him on or off the ventilator until then he stays on it." Baby stayed in the NICU until he was almost a year old. Their son now had a trach which was attached to a ventilator, and a Mic-key button to feed him by. They had to learn to care for their son, how to feed him via the Mic-key button, and all his medical equipment that would help sustain his life. They also now had nurses coming in and out of their home 20 hrs a day to help take care of him. Baby continued to grow and he made it past his first birthday. He was in and out of the hospital two to three times a year with respiratory infections. But he still continued to grow and amaze the doctors that had no hope for him past the age of one. I came into his life at the age of 3. At this time he only had a few words in his vocabulary and did a lot of pointing to get his point across. At age 6 he enters kindergarten already knowing his ABC's and could count to the number 10. OH! Also, he was bilingual since his parents spoke to him Spanish and his nurses spoke to him in English. So he now had a very broad vocabulary. He was able to sit up, breath on his own for a few hours at a time and play video games. He amazed his teachers throughout his school years, who didn't know what to expect of this child that came into their classrooms, driving an electric wheelchair, hooked up to a ventilator, with a nurse in tow. The kids at school fell in love with this little boy in the wheelchair, with the long brown eyelashes. He even had a girlfriend, anytime she went to the store and found something with Sponge Bob on it she begged her mother to buy it for him. At age 8 he received a "Make-A-Wish", where we thought we (his parent and I) had him talked into asking for a computer for his room. The day the "Make-A-Wish" team came to ask him for his wish, which he had to say out of his own mouth, I was absent with my own child in the hospital. Baby and his mother made a visit to the hospital and that is when she announced: "We are going to Disney World." No matter what we had thought, he let his own wish be known and we went to Disney World. It was a magical week, where he got to be a kid and have a real vacation. In August 2006, Baby went into the hospital with a bad infection of the Kidneys. I received a call from his mother that morning. He had already crashed twice and was brought back. When I arrived at the hospital he was in a semi-conscious state in the PICU. I visited with him and his mother for an hour, I wanted to stay longer but only two people could be in the room at a time and I didn't want to take too much time away from his father. His mother talked about not wanting to see her son suffering any longer but she did not want him to go either. This family was faced with the decision to terminate or not to terminate life support again. They decided to continue with life support but if he coded again they would let him go. That night I got the call, Baby's life had ended at 10 years, 11 months and 18 days.
  12. The call came in while at work. My mom's brother Steve had been rushed to a hospital. He was dying. I decided to go on the weekend when I was off, as my partner at work was out sick. I flew into Canada and made my way to the hospital. My aunt, a retired RN, was there with him and had not left the bedside for the last five days since his admission. They had been married 51 years and did everything together. She decided to go home for a few hours to freshen up, while I stayed with him along with his older daughter Carol and her family who came a few hours later. As I turned and positioned him gently, he screamed in pain. His prostate cancer that had been in remission for 16 years had come back with a vengeance and spread to his bones and lungs with metastasis to his spine. He had an ineffective cough and had phlegm in his throat that we could not suction as it was deep. His lungs were clear. Every time he coughed he would begin to panic as he felt his airway was blocked. He would ask to be lifted to sit up higher and struggle to breathe. I constantly heard the death rattle and saw him struggle to breathe. It was hard to watch and I felt helpless wondering how I could ease his suffering. His mind was clear and he was fully conscious. His nurse Laly came in. I tentatively asked her if his pain medication protocol could be reevaluated as it did not seem to be helping him. I also asked if we could up the oxygen as he was only on 1.5 liter due to his Chronic Obstructive Pulmonary Disease (COPD). "At this point Laly, we would like him to be comfortable. His COPD causing respiratory depression when the oxygen is increased is the least of our worries. What do you think?" She smiled compassionately. "I absolutely agree" she nodded as she adjusted the oxygen flow meter. She then left to page the MD in charge and ask him to adjust the Dilaudid IV for pain. Later the doctor came and we talked about the plan of care. He would not be transferred to a hospice bed as there were none available but would get the same care on the floor. As uncle slipped in and out of consciousness he wanted me to sit next to him and hold his hand. "Do you know Annie that I am waiting to go? I am going on a journey. The vehicle has not yet come for me. It will come. It has so many wheels and has to make so many stops----." I smiled through my tears. "It will come uncle, in it's time." "Annie, sometimes when I see you, I think your mom is sitting next to me and Jerry my brother is standing nearby." Both uncle Jerry and my mom Mary had passed years ago. I am sure they were visiting him unseen by me but clearly visible to him. His eyes clouded and he fell asleep his breath rasping.I gently removed my hand but his grip tightened. "Annie, don't go!" "I am right here. You are safe." He lapsed back into a fitful sleep. Aunty and I looked at each other. "Aunty Bea, you have to give him permission to go", I said softly. She sobbed and shook her head. "I know. I have to. This is so hard. I can't bear to see him suffer." Her composure that had been rock solid throughout the day, when visitors had come from all over Canada and the United States, crumpled now that they were all gone and she broke down sobs racking her body. RN Lally came in to see both of us in tears crying softly as he was in a double room with another patient behind the curtain. Her eyes filled and she walked out. In half an hour she came back and signaled us with her eyes to stay quiet. "The doctor told me that he needs to be moved to another room as his condition is worsening and he needs some medical procedures done." She announced loudly. She quickly packed our stuff and took it to a private room, two doors down. A couple of other nurses came and helped move his bed over. She even got us two sleeping sofa chairs for the night. This room was big, spacious, with a bathroom attached with a stand-up shower. It had a window ledge where you could sit and get a beautiful view of the city. Once we were settled she told us that they gave uncle a private room so that he could be surrounded by his family in peace as he died. "I see that you are a prayerful family. This way you can say your prayers, sing and not be afraid that you are disturbing anyone. There is a window on one side and the hallway on the other side of this room. So you can sing, cry, talk and it won't disturb anyone." That night I forced aunty to sleep and I sat with uncle my hand linked with his. Once aunty got up around 4 am we kept him company till dawn. She gave him permission to leave and promised him that she would take good care of their three girls. "Steve we have been together for 53 years and been married for 51 years. We always did things together. I wish I could come with you and die with you but I have to stay behind for our daughters. When you go to heaven advocate for our family with Jesus. It's ok to go. I will take good care of our daughters", she sobbed, her face on his chest, her hands around his neck as she leaned over the bed. I cried stifling my sobs in the dark listening to her, my heartbreaking for her. I wiped my tears, got up and moved uncle to one side of the bed. "Come, aunty, get into the bed with him. This is the best thing you can do for him and you." She got into the bed and cradled him gently. He slept peacefully in her arms. The next day family and friends started pouring in, some driving as far as New York, Detroit, and Chicago to see him. My flight back to New York was in the evening and before I left, I kissed him on his forehead leaving my lipstick on him! His eyes flew open and he asked me where I was going! I told him I was leaving to go home but was leaving my lipstick and prayers behind! Uncle hated lipstick and that had his daughters smiling through their tears. We said goodbye with our eyes and I walked away knowing I would never see him alive again. He lived for three more days. Everyone who had planned to fly in or drive in to see him got a chance to see him. Early morning on the third day, aunty cradled him and said the Divine Mercy Chaplet in his ear and sang a song about the Holy Spirit. As she finished the song, she looked at his face. His breath had stopped and he had slipped from this world to the next. My family drove to attend the funeral. When we were at the gravesite we realized that it was close to the airport and that a plane took up every 30 seconds. When the coffin was lowered into the grave, a jet roared overhead, the familiar Orange colors of Air India, the official plane of India, his birth country. Just like he had told me his vehicle had come to take him home!
  13. Hospice: A New Direction Now I wasn't just stepping back into a direct care role on "the floor" of Med/Surg. No, I took a role as a field nurse in an area considered taboo by even the best nurses. Most nurses cringe when hearing that name with the usual remark, "I could never work there. It takes a special person to work in that area." Yes, I accepted the job and began working the first week of May 2007 in none other than Hospice. I chose Hospice because it really was nothing like what I had worked in the past. I thought it would get me out of the hospital walls and the headache of management. I had worked in community health nursing in the past an enjoyed the autonomy it allowed. The time for private thought and traveling farther than the bathroom or the cafeteria was oddly appealing to me. It even seemed weird to say but I thought after working in management I owed it back to the direct care nurse to put my hands to the grindstone, a philosophy I appreciated as a floor nurse and held myself to as the coordinator. I looked forward to giving of myself to my patients. What I have gotten from my patients, however, has left me often feeling like the receiver instead of the giver. Hospice: A Never-Ending Experience In a nutshell, the Hospice philosophy is to provide the patient with the best quality of life for as long as the patient is alive. That sentence doesn't give Hospice justice, but this article isn't about what we as nurses can do for the patient. This article is about what the nurse takes away from the experience. Call me the eternal optimist, but in a world where gray clouds loom and joy gets robbed with every heartbeat, I believe God provides a silver lining. In the realm of a dying person, there are always treasures to uncover. I never imagined how a job taking care of others in their greatest time of need could give back so much. Sure, every day I see a patient and I am reminded that my problems are not life ending. Every moment helping them when they deal with pain or breathing difficulty I thank God my problems are life changing, not life-threatening. Every time a patient dies I know I am blessed to be alive. Patients Share The Greatest Wisdom I am amazed when out of the crackling voice of a dying patient comes words of clarity, truth, and strength. When we are not treating, comforting, and answering questions; when our mouths are shut and our ears are open, it is the patient who usually has the greatest wisdom to share. In providing the best quality of life to a dying person, it is that person who has spoken so much into my life. I find myself driving away from the home speechless at the boldness and profound words that pour out of them. In eight months I am honored that my life has been blessed by my patients. I honor the wisdom, knowledge, and strength of a man, woman, or child who faces the greatest unknown and has made peace with their life. They get it. They understand it. If only we, the non-terminally ill nurse, social worker, therapist, and the doctor could learn to live with that passion and boldness. If only we could learn to live like we were dying. It is that knowledge and wisdom when we listen, that is worth dying for. T.J. Bristle RN BSN CLNC
  14. jeastridge

    End Of Life Conversations With Families

    Talking about the end of life is not for the faint of heart. There are many obstacles, including our individual sense of immortality. It's such a serious topic that I'd like to start with the story of a man who came to see his doctor. He said, "Doc, I'm sick. My face stays red and my eyes are popping out." The careful doctor did a thorough exam and said, "Let's run some tests." At the next visit, the kind doctor looked at his patient and said, "I'm sorry to tell you this, but I can't find anything specific on your tests, but I think you are going to die. You had better get your affairs in order." Discouraged, the man left the office and thought to himself, "Well, if I am going to die, I might as well do it in style. So he went downtown and ordered himself the finest suit of clothes money can buy. The salesman asked him what size shirt. He said, "15 1/2, and 34 sleeves." The salesman laughed and said, "There is no way you wear that size." The man said, "I oughta know what size shirt I wear. I've always worn that size. Ever since I was 15!" The salesman looked askance and said, "Well, I'll sell it to you but it'll make your face turn red and your eyes pop out." Funny, but the truth is, there is a 100% chance that we are all going to die. My favorite doctor sometimes has people ask him, "Doc, am I going to die?" If the patient and the situation can absorb it, he will smile and say, "Why, yes, and so am I." Despite the inescapable truth, we often get up each morning and the first thing we do after getting our creaky bones into a standing position, is to pull on our cloak of immortality-almost as if by not talking about it, we can delay the inevitable. Know that caring for our loved ones is a privilege and responsibility. It is the right thing to do. In 1 Tim. 5:8 we read "If anyone does not provide for his relatives, and especially for his immediate family, he has denied the faith and is worse than an unbeliever." It is not an easy directive, but it is part of our walk. This directive could expand further to refer to the family of God-the Body of Christ. As we consider how and when to have this conversation, I'd like to offer a few tools and ideas about how to have this talk, either with your elderly loved ones or with your children. As Jesus says in Matthew 11:28, "Come to me, all you who are weary and burdened, and I will give you rest." It is an established fact that we all want to have choices and dignity. We want to have control of our finances and our transportation as long as we can. We all want to have peaceful, loving relationships that sustain us to the end. We all want to live well as long as we can and make a graceful exit when the time comes. If our desires are so similar, then why is it so hard to talk about death and choices surrounding this inevitable transition? In a word "fear." In Scripture, we see Jesus saying multiple times, "Do not fear" and the refrain is repeated throughout the Bible. He knows the dust we are made of. He understands and walks with us through the valleys of the shadow. But just knowing that the enemy is FEAR-naming it-can help us face it. There is this joke I've heard about a time when a church was having a revival. On the last night of the revival the preacher was really getting into his sermon. The choir was humming in the background, saying amen and swaying to the cadence of the preacher's words. Finally, the preacher got to the pivotal moment in the sermon and said, "Who wants to go to heaven?" Everyone in that choir raised their hand up high. In fact, they all started standing up and waving their hands. Only one older gentleman sat there, arms firmly glued to his side. The preacher turned around, zeroed in on him and boomed through his mic, "And you, sir, don't you wanna go to heaven?" The old man answered calmly, "Why sure I do. I just thought you were getting up a bus load to go right now!" Yes, we all want to go to heaven-tomorrow! So let's get down to some nitty-gritty some practical stuff that can help us through having the tough talk: Words matter. I have a friend who shared with me how hard it was for her to relate to the language the hospice team used to answer her questions about "how long" it would be. They said, "Your mother is fighting." Or "She's a fighter." For my friend, those were very difficult word choices. She would much have preferred, "We don't really know why it takes so long sometimes." We can all probably think of phrasing that is not our favorite. One that is hard for me is, "There is nothing more we can do." I disagree because there is always something we can do, even if it is holding the families' hand or offering comfort care. Some people may respond to the language the doctor in the joke uses: "I don't know what's the matter with you, but I think you are going to die," but not many. Most of us appreciate a little more finesse in word choice. Timing matters. Setting matters. Think about THE TALK ahead of time. Know yourself and your own motives and issues. Know the person you are talking with-their needs and their fears. Consider your past relationship and tailor your approach. If you are the engineer, analytical type, be aware that your list may offend or intimidate your artistic child or parent. If you are the artistic one who loves visions of the afterlife, consider that your analytical parent may call is all "hogwash." Neither is wrong, just different. Start with prayer (on your own or together, if the situation allows) In James 1:5 we read, "If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him." Ask questions I tell people that we often have to bring up the topic of a move, a change in driving habits, or healthcare choices multiple times before a frank conversation is possible. The goal is for the person you are talking with to have time to consider the choices involved and to come to a point where they own it themselves. In scripture we see Jesus use this technique multiple times. "Who do you say that I am?" By asking the question, he invites the listener/reader to come to a decision point for themselves. In Atul Gawande's book, Being Mortal he suggests using the phrase, "I am worried..." Other phrasing might be, "Have you considered..." or "What are your thoughts about making a change..." Recently, I was talking with a mom and her daughter. The daughter did not appear to welcome me into the hospital room, so I entered cautiously and kept my voice soft and my comments generic, essentially putting a moistened finger up to test the direction of the wind. I asked about plans for going home and the woman, who was becoming very frail, set a hard line that indeed she was going back to her home. The daughter, with a look of helplessness, admitted that finances were an issue. So we carried the conversation toward ways to keep her safe at home. After we had established bridges amongst ourselves, I was able to introduce some ideas that help make assisted living more affordable. At the end, we all prayed together and there was a greater sense of hope in the room. The idea of exploring assisted living crept in and sat waiting in the corner. Evaluate your resources and get help, if needed Our God is a god of abundance and love. He does not leave us stranded, abandoned. He comes to our aid with armies of helpers. In the story of Elisha and the Arameans, (2 Kings 6) he tells his servant, "Don't be afraid. Those who are with us are more than those who are with them." And then he prayed, "Oh Lord, open his eyes so he may see. Then the Lord opened the servant's eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha." Remember, that when things look hopeless, we have the armies of God on our side-if we ask. Invite your pastor, parish nurse, doctor, eldercare lawyer, social worker, counselor or respected friend into the conversation. Or maybe you have a sibling that is just better at dealing with these topics. Acknowledge that and circle up. If you need to have a difficult conversation, get an appointment with your family member's doctor to discuss it first, or write them a letter. It is often too hard to do this in front of the family member, and in a short office visit, it is hard for the physician to know what is really going on. Some attorneys can be very helpful in facilitating end of life conversations and in shining a light on the legal path ahead. Some even specialize in Elder Law or have a special interest in this part of law. Covering the basics When it comes to end of life discussion, remember that as long as you or your loved one is able to speak and make their own decisions, advance directives do not come into play. The difficult part of course, is when dementia creeps into the room and lies stealthily under the rug, ready to trip us all up, popping in and out of the conversation at will. Or when in the course of a hospital stay, medication and treatments make decisions impossible for the patient-that's when our loved ones and care providers look to us. Studies show clearly and convincingly that medical professionals often don't want extensive interventional care at the end of life. Many of us have a strong preference for "AND" - or allow natural death. And I would stress that the phrase refers to "when that time comes." As long as there are reasonable hopes for recovery or for meaningful life, then none of this applies. Quality vs. quantity of life As our physical abilities diminish over time, the definition of quality changes. What are we content with? What is a "good" life? When does quantity bow its head to quality? In times of crisis, we become advocates for our loved ones. I like to stress to families that our job in making end of life decisions is not making the choice we want but making the choice they would want. Every decision is temporary We do the best we can with the information we have available to us today. Tomorrow things might be different. You might get mom all settled into the perfect place and then she falls and breaks her arm and the situation is different-all over again. But when our loved ones are struggling with the hard transitions, it can be very helpful to let them know that "we will try this" and see how it goes. If we need to backtrack, we will. Almost always, there is another direction to go in, even if we can't see it right away. Change is easier to take in tiny bites: first the help coming in, then the move, and then later (if possible) selling the house. Sometimes it doesn't happen Sometimes, despite our careful planning, the conversation just doesn't happen. Our loved ones resist us at every turn. Our kids don't want to hear it-no matter how hard we try. [if this is the case, you might try writing a letter, expressing your wishes and give a copy to each child or tell them you just need 15 minutes of their time to read over it.] One of the lessons we learn in life is that sometimes we can't make everything turn out ok. People have free will and they can make poor choices. We can find ourselves in the uncomfortable position of having to stand by while our loved ones make decisions we do not agree with. The best policy then can be patience and love-at a distance. Maintaining a loving relationship while staying slightly removed can be the best help. We have to know that while we never give up, we also have to refrain from beating our heads against a wall. Maybe the time is not right; maybe they need to come around to their own decision time. And sometimes bad things happen that are just out of our control. Recently, I participated in admitting a woman with end stage liver cancer to hospice. She was adamant that she wanted "everything done" and told her physician as much that morning. It was sad, because she already had many signs that the end of her journey was close at hand. Further adding confusion to a muddled picture, was the unsettled feeling the family had that medical science had not done enough. They wanted more time. They were beyond disappointed. They were angry that their precious loved one was dying. Into this picture, comes the hospice nurse, treading through rough waters, pulling a chair up to the bedside and asking questions. After a few minutes, it was clear that this dear lady had set a stubborn course of interventional care for the benefit of her bereft children. And also because she was angry. But as we discussed what it really means to be resuscitated when your body is broken, I could see her eyes soften with tears as she resolutely said, loudly enough for the children to hear, "I don't want any of that." With her statement, the tide of anger washed out of the room and was replaced by a slow seeping of sorrow as tears flowed freely and preparations for a final departure began. As Henri Nouwen's states in his Bread for the Journey, "Dying is returning home. But even though we have been told this many times by many people, we seldom desire to return home." Yes, we know that someday that bus is going to leave the station and we are going to be on it. I hope that this discussion is helpful as you consider how to talk over preparations for the final trip home with your loved ones.
  15. Ruby Vee

    It's Already Gone On Long Enough

    My mother-in-law had a stroke last week. Details are sketchy -- she's several hundred miles away and the daughter who lives closest, a mammography technician, knows just enough to tantalize my husband and me with some of the medical details, but not enough for us to get the full picture. She had either a right CVA or a left -- Rosita isn't sure -- and has either left hemiparesis or left -- again, Rosita isn't clear. What is clear is that she had a diminished level of consciousness and wasn't able to swallow. Did we think she should give permission for a feeding tube? Mamita is 89 years old. She's been institutionalized with dementia for nine years. No matter what we do or don't do, she isn't going to get better, her dementia continues to progress, and she hates living in the nursing home. When she first went there, she wore an ankle monitor because she kept trying to leave. She was in the memory care unit because Hurricane Katrina and the disaster that was New Orleans snatched away what remained of her clarity and functionality, then the Sheriff's department put her on a commercial flight and sent her off to live with her daughter in New England. What else were they going to do with her? She couldn't be left alone because she'd immediately try to go back to her house -- under water at the time. And letting her wander among people wasn't safe -- she tended to attack anyone who annoyed her. Mamita was always easily annoyed. Nine years in a place she hated, and my first thought was that the stroke might offer her a way out. If you ask anyone whether they'd like to die with dignity, or whether they'd like to be kept alive on machines even if there's no hope of recovery, no one opts for the machines. At least, they don't if you give them some clear idea of what you're asking and ask them before they get to the point of being awake, afraid to die and facing the point where the only hope of keeping them alive IS the machines. Why, then, do we even offer the feeding tube to the family of an 89 year old patient institutionalized with dementia for nearly a decade and without any hope of recovering? I'm not sure how serious the stroke turned out to be -- she has hemiparesis. Even if there was a chance of recovering from the stroke, she won't recover from the dementia, and the dementia makes it all but impossible for her to recover from the stroke. How do you get her to do the exercises that will strengthen her, how do you teach her how to use a spoon or dress herself or use the toilet with one hand? The stroke took away, and the dementia makes it impossible to get it back. Mamita got the feeding tube. Her middle daughter, the one who lives farthest away and has always wanted the least to do with her insisted that she couldn't live the rest of her life knowing that "Mamma starved to death." Why is it always the ones who live farthest away, who have the least to do with the patient while they are able to interact and who know the least about the situation who always draw the line in the sand and insist upon "doing everything"? Why is it that they don't listen to the son who knows? This isn't "doing everything." It's just prolonging her death. It's already gone on long enough.
  16. "To Suction or Not To Suction, End-of-Life & Hospice Patients" is an article I recently published in allnurses.com and the responses were very conflicting. As of today Sept. 13, 2018, there are over 16,000 views of the article and 3 pages of clinician comments! So the results are in: "To Suction" = 20 votes vs. "Not to Suction" = 13 votes and 6 people voted that they were impartial. On one hand there is a clinical group that thinks, "Not To Suction". Some clinicians believe suctioning of the dying patient is actually more harm than good. They believe it is uncomfortable and goes against the comfort care principles. They feel suctioning is unnecessary because it is not a curative treatment of the dying patient, but only symptom management. Some think it makes the family feel better but does nothing for the patient. On the other hand, there is a clinical group that thinks, "To Suction". Some nurses believe they are not only dealing with the patient but also the whole entire family, therefore treating both is of most importance. They think it only seems reasonable to suction a person who is in need, even if it is only considered symptom management. They want to give patients a dignified death, not one where they sounded like they were drowning in secretions as the family looks on. Since we did not receive enough votes from the previous article to form a strong opinion, I started to review the research that has been done on family members' perceptions during hospice and palliative care. What Does Current Research Say? A research study at 95 Palliative Care Units of 360 family members that witnessed their loved one's death: [shimuzu, et al. "Journal of Pain and Symptom Management" Vol. 48 No. 1, July 2014]. 46% experienced the "Death Rattle" 66% reported High Distress Levels 53% perceived A Strong Need for Improvement of "Death Rattle" care. 64% thought the patient was drowning 57% felt as if they themselves were suffocating 98.3% reported that Nasopharyngeal & Oropharyngeal Suctioning helped improve the "Death Rattle'. PROBLEM: 62% reported patient discomfort with suctioning and 12% reported rough suction technique. Although I completely understand trying to avoid and not performing excessive suctioning on a dying patient, some suctioning may be necessary. I would not consider any suctioning comfortable, but there are techniques and methods of suctioning that make it much more comfortable such as No-Bite V suctioning with the use of a red rubber catheter. Red rubber suction catheters are much softer and minimize any insertion trauma. And the No-Bite V allows you to introduce a catheter orally and avoid the nose altogether. I think everybody basically considers nasal suctioning an act of torture at this point, especially repetitive nasal suctioning. But if suctioning can be done in a minimally invasive manner, it increases the patient's comfort level once suctioned properly. And I definitely think suctioning a dying patient brings a calmness to the room, as well as the family. I would never want a family to take away that their loved one suffered or went through some difficulty breathing, in that they actually heard the patient's breathing difficulties in the form of the death rattle. This is something a family would never forget. A nurse's goal is to minimize any degree of suffering, physically and mentally, to both the patient and the families. One nurse's comment really sums it up: "I don't want a patient to die on my watch because of poor nursing care instead of their underlying disease. The patient should not die from a plugged trachea, they should die because their body gives out from their disease." Now that the above research has given insight into family members' perceptions of a dying loved one... What side do you agree with:To Suction or Not To Suction?
  17. mother/babyRN

    I Hear Singing and There's No One There

    It reminds me of the query "what came first, the chicken or the egg." Do you become a good nurse because of your life experience, or does your life experience make you a good nurse? I just don't know. What follows is a bare rough draft of my feelings on the second anniversary of the death of my father. I share it because as a daughter and nurse, I often felt helpless and selfish when involved in his care. I say selfish because it is so painful to watch someone you love suffer horribly and there invariably comes a time when one has to acknowledge that you desire it to end because it is just too tough on you. That is a difficult thing to admit and once you do, you have to find a way to forgive yourself for feeling that way. Of course, you want the person in pain to be alleviated from pain and despair, but nurses (and sons and daughters) are only human. When you are so personally involved with a patient or your own family, invariably the worlds of nursedom and daughterdom collide. There are difficult decisions and worlds of wonder to discover. The best advice or tip I can offer is to try not to lose yourself along the way...Thank you for allowing me to share... I Hear Singing But There's No One There... So it is just after one in the morning this November 21, 2007. I should be sleeping but I can't. Lately, sleep eludes me most probably because my body just has no idea how to fall asleep given my crazy night schedule. It doesn't really matter because I was always a creature of the night. There is something alluring about the solitude of night. I can't identify it but I've always felt comfortable with it. I call the night my blanket of safety. My dad felt the same way and I like to think, though I could hardly know, that I got that quirk from him. November 17th marked the second anniversary of his death. He died at home, which was in retrospect, so much better than dying at the hospital. I say that only as someone who has attended countless hospital deaths. However one spins the experience, it just doesn't compare with being surrounded and comforted by loved ones within the confines of one's own home. I think I knew the night before that something would happen. I wished it would. Though that is hard to admit to, it is true. Most of us would attribute that sentiment to wanting to end the suffering of the person who is sick. While that is certainly true, there is an element of significant pain of the ones left behind that just can't be ignored. It is so torturous to have to watch your loved one suffer and decline. I guess that means it is more about the ones left behind than the one who is destined to leave. I hate it when they let us humans in. I gave my dad some morphine to help him breathe without pain. My brother told me dad had a good night after that, perhaps one of the best he had had in ages. I felt horrible about that. Why hadn't I pushed to get him some sooner? After all, who in the world cared if he became addicted? Why wasn't I more proactive in that area? Why didn't I do more? Everyone expects so much of me. I'm the nurse. I'm the daughter. I'm the one charged (even if only in my mind) of taking care of everyone. Why couldn't I help my father? The evening before his death, dad finally spoke to his doctor about his wishes not to be revived should things turn for the worse. I knew as soon as I handed him the phone to have that talk with the doctor regarding his living will, that he was not long for the world as we know it. It wasn't that he had given up. He had given in. I was, in a weird way, glad for him. I knew how much he had fought to keep the illness at bay. I knew how much he desperately wanted to be there for my mom and their fifty year anniversary. I knew that it was nearly over. I just knew. I didn't sleep much that night. I spent the majority of the night praying to God that I would be there when he died. I cried much of that time but not for dads passing. He was at peace with that. I had heard him say so. His words to his doctor were "I've had enough, I'm tired, I believe in God and me thank you for all you've done, but I'm through." He said it as though he were having an ordinary conversation so I knew he was at peace. When he had started calling out to his parents not long before I knew time was brief. In the morning my mother called. She needed help to change the bed because dad had been incontinent. I felt a pain in my heart unlike any I have ever felt, but I somehow managed to at least try to nurture my mother as best I could, telling her I would be right over. In the shower, I wondered if I could be strong for her and everyone but most of all, for me. I remember thinking, foolishly and abstractly, that the fact I had gotten my period was not only inconvenient but kind of symbolic. In all my years as a nurse, it seems that there are always signs of life when death is imminent. During the birth of my son Christopher, as his arrival was being announced to my dad upstairs from the labor room, dad had been struck by the fact that at the exact same moment, another family was sobbing in the halls over the death of a loved one. Back then I stored that tidbit in my mind but never really thought of a time when it would be such a poignant memory. Funny how that happens to us all. Stored snippets of memory that somehow jump to the surface as if we knew all along they would rise to the top. The morning of the seventeenth was beautiful. It was sunny and not too cold. Only later did I realize that I had put on a red sweatshirt. Red was dad's favorite color. I wonder if I somehow just did it for that reason. I don't know. I hope so. I don't remember much of the ride over. How do you prepare for your father's death? I do remember wondering if anyone was going to be strong for me. How is that for selfishness? Always having to be the strong one is not an easy role to play. There are times when you wonder who is going to be there for you. You have to be sensitive to the needs of certain family members but it feels as though no one has to be sensitive to you. No one understands or really even has an expectation that you are suffering too. They think because you are the strong one that you will sail through. They think because everyone expects them to be less strong or more affected in some way that you will understand. That is such a hard place to be. To have to try and weed through all the sensitivities and nuances of everyone but not to have them have the same expectation for you. Dad was confused. His feet were purple. Just to turn him caused him immense pain and when he cried out my heart ached for him. I wished that he would die because it was so hard to see him in that kind of pain. I wished I had figured out a way to talk with him at length, knowing that he understood how much I loved him. I was never able to have the in-depth conversations with him my brothers had. As he gasped for breath after we finished changing his bed, I knew the mere fact that he had allowed me to assist my mother meant that he had truly surrendered to God. He had not given up; he had just accepted that it was his time. It was such an awful scene. I stroked his face and tried not to cry. I cried. Almost as difficult as watching my dad try to breathe was the sight of my mother in tears muttering over and over again, "It's OK Bobby, it's OK." I could see the years flash in my mind and could only imagine what was going through her mind. Was it the time her sailor Bobby had his necktie bitten by a horse? Was it that first meeting? Was it the birth of their children? Was it the difficult times? I imagine it was most likely a split second synopsis of their life together. I gave dad some of his medicine to help him breathe. It took a few minutes but his breaths became much less labored and he even looked peaceful. I don't know if he knew I was there. Mom took his hand and lay her head down on his chest, still moaning "It's OK Bobby, it's OK." For reasons yet unknown to me, as I stood at the door of the bedroom taking in the scene of my mother's farewell to my dad, I started singing a song he taught to me as a young child. "I hear singing and there's no one there, I smell blossoms and the trees are bare, all day long I seem to walk on air, I wonder why, I wonder why. There are times when I can't sleep at night. And what's more, I've lost my appetite. Stars that used to twinkle in the sky now a twinkle in my eye, I wonder why" I wonder why I sang that song, but now I am glad that I did. I like to think it soothed both of us. It occurred to me as I was singing that I had to let my mother know that she had to give dad permission to die. So, I told her she had to give him permission. "Permission for what?" she angrily spat my way..."Permission to die," I quietly replied in tears. "Bobby, it's time to go home." "We've been together for fifty years and I loved all the time we had." "It's time to go and stop suffering." At that moment I called my husband and asked him to come over. There had been so many occasions when we had thought the time had come only to have dad make a reprieve but this time I just knew. Dad was for once, breathing peacefully. He seemed calmer with mom...I left the room to call my estranged brother to tell him that dad was dying. I don't know if he believed me because he was short with me on the phone. Given our estrangement, I imagine that was to be expected. I was angry with him for not realizing the gravity of the situation. Dad had tried so hard to hang on for everyone and not show them the depth of his pain and deterioration. But, a nurse sees the truth. A daughter sees the suffering. Dad took his last breath when I was out of the room talking to my brother and I have to believe he knew that I wasn't there. People can and do choose the time and circumstances of their deaths. I have seen it hundreds of times in my career as a nurse. I have held the hand of people who had no one else to be there. I have hugged and held strangers who at the moment of their passing were closer to me than my closest friends or family. But, I wasn't there when my dad passed. I was talking to a brother who hates me. For some time that colored my thoughts and wreaked havoc with my emotions but then I realized that in an odd way, it was dad's way of at least bringing us a little bit together. And, it was his way of saving me from the pain of witnessing that ultimate moment from life to death. I know he was at peace. I know that in my heart and soul, so I accept that it might have been his last attempt at keeping some control in an uncontrollable situation. Since then, I have been preoccupied with my own mortality or lack thereof. When I think of how quickly the last twenty years have passed and how I may not perhaps, have much more than that time in the world, I am stymied. Life is short. I'm saddened that I no longer have a relationship with the brother I spoke of. I'm saddened at the loss of my youth. I'm amazed at the way time flies away when you are planning other things. There isn't any time to waste. I wanted to be an archaeologist or an oceanographer. I wanted to write stories. I wanted to experience so many things that I was never brave enough to try. Why? If one single second of my life had been different I wouldn't have what I have now but still, I wonder. Lately, when I am having a difficult time at work I have to laugh because I will always find a penny on the floor of the lounge or in my patient's room. Walking into chaos is always difficult and on the nights I just feel it can't get worse, there will be a penny on the floor. Dad used to always tell us when we found pennies that they were pennies from heaven. That's why we place them on his grave... I play silly games with myself such as saying, "Dad, if you can hear me, let me hear a crow." And then, of course, I hear one caw at the moment in question. Real or imagined circumstance, it makes me feel better. When I was a young nurse, I was an attendant at the death of a well-beloved person. I say well beloved because his family was all there and the death was both expected and accepted. We, nurses, were just there for support. At the moment of his death, another nurse and I witnessed a luminescent cloud of something leave his body and curl slowly up to the ceiling. I don't know if anyone in the family witnessed that. If so, they never spoke of it, but the other nurse and I looked at each other in both shock and amazement. We didn't really talk about it other than to wonder if that had been his soul. I will never know, but I have to believe my dad is in a better place, as cliche as that must sound. I have another brother whom I deeply love and respect. He is brilliant in so many ways. He contends there is no God, that afterlife is simply some sort of manifestation of energy. His explanation comforted my mother and really, it is all a matter of semantics because something happens which is beyond explanation. In my view, it doesn't really matter who is wrong or who is right, or even if there is a Heaven or not. If what we believe is strong enough to sustain us through life, that's OK with me. I'm not going rewrite this. This is my rough draft. This is how I feel. On this November seventeenth, I thought of all my brothers and mother and children. Although my husband doesn't talk much about it, he also dearly loved my dad and was there at his passing. Dad loved him as he did his own sons and told him so. Who comforts him? People don't have to say anything. I know when my husband holds me or pats my shoulder, he is saying so much more than he could ever say with words. Not long ago I worked two difficult night shifts. The first involved a patient who had gone to a routine doctor's visit only to discover that her baby had no heartbeat. She was to be my patient for twelve hours. She was in severe pain of cramping and contractions we had to induce so she could expel her dead fetus. She was still in the throes of doing that when I left in the morning. The next night, I had a labor patient who had lost her mother during the pregnancy. Her due date was November seventeenth. I was quiet that night but didn't speak of my own personal memories of that particular anniversary. She didn't talk much about her mother and I didn't press her, but at the moment of delivery, when she saw her baby, she burst into tears. I understood. Later, when all the equipment had been cleared away, she grasped my hand and burst into tears, with heaving, heart-wrenching sobs..." I want my mom!" she cried with enough anguish to hurt my heart. "Will you be my mom today?" Fighting to hold back my tears, I told her, of course, I would. Later that morning when I returned home and helped get everyone ready for school, in the middle of a conversation (or gripe session) with my husband, I was suddenly overwhelmed with emotion, and burst into tears..."I want my dad", I cried every bit as sad as my patient had cried out for her mother. I wasn't prepared for it. I never am. As my shoulders heaved with gut-wrenching sobs, and the tears fell, I remember saying to my husband, "I hate it when this happens." I guess being a nurse doesn't always guarantee one can control their own emotions. But, it was a good thing that it happened. That morning I finally slept. I miss you, dad. I want you to be here with us but not at the expense of you feeling the way you did. I honor you and I love you. I still daily review your voice in my mind so I won't forget it. And as much as you always said I needed to have the last word, I would give my life and everything I have for the privilege of YOU being the one to have the last word. I love you, dad...Night night... Love always, Martha
  18. madwife2002

    Death came to visit

    Death came to visit Friday, it was not kind, and it was not peaceful for my friend's mom-it was hard, she struggled so much, her mind was ready, but her body fought her to the bitter end; causing trauma to her loved ones who stayed by her side so she did not die alone. The family had discussed end of life choices, and treatment was stopped on Tuesday, with the only intervention being pain medication. Death is still a taboo subject that many of us prefer not to discuss. Why is this? Unless you work as a healthcare professional, the clergy and funeral directors, many people are not able to talk about it freely. As a nurse who has been with many patients as the end of their life, I know you cannot prepare their loved ones for the final end. You cannot say that it will be peaceful, you cannot give a timeline and you cannot promise how it will be because you really don't know. There are relatives who have no clue about what their loved one wanted. There is often no discussion about end of live choices. I have been fortunate to be with my sister and my mom when they breathed their last breath and it was peaceful, calm and a relief that their struggle was over. I have been with patients who have passed away peacefully without pain, without struggle and without suffering. I have also been with patients who have fought to the bitter end, every last breath being a struggle for them. It was like something from a horror movie only it was real life. My question is why? Why do some people have horrible deaths and some people go quietly. It certainly doesn't pertain to how they lived their life; I can vouch for that with my own eyes, experience and knowledge. My mother was a feisty firecracker of a woman who fought for everything in life, never gave in to anybody and would never hold her tongue. Yet her death was one of the most calm, peaceful I have ever experienced. When somebody passes what determines if it is peaceful? What would determine if death is going to be horrible? Is planning important, should patients and relatives make known what they want near the end of life? You still cannot guarantee that death will be peaceful, however everybody involved knows what their loved ones want. Is it the environment they pass in? Can we choose where to die? Hospice is a wonderful environment, where the nurses, aides and doctors are amazing. I have never seen such caring individuals. When my mom passed many years ago they were amazing, I will never ever forget the kindness my mom received and how supportive they were to my husband and myself. The atmosphere was incredible in a hospice where everything is available for support. Nothing was too much trouble; nobody seemed rushed or didn't have the time to spend with her. Hospital can be a frightening place for many people, yet many will die in the hospital this year. Some expected deaths and some unexpected deaths. Relatives can add peace or trauma when their loved one is dying. The circumstances of impending death play a huge role for end of life decisions. Is the hospital environment a good one for a peaceful death? Yes it can be. It can also be a very traumatic experience. How many things can contribute to peaceful versus traumatic-who or what determines the definition? Hands up! How many of us nurses have witnessed needless interventions, pain and suffering? How many of us have experienced relatives prolonging life as long as they possibly can? Does this add to the trauma of their dying? End of life discussions can be very difficult; but it shouldn't be; as it is something we are all going to experience as our only guarantee in life. Many people do not have a living will. Many people do not even understand the terminology 'Living Will'. It makes no sense to them, although we as healthcare professionals are much better at promoting living wills. Even with a living will there can be struggles to make sure your wishes are followed, but without one relatives can fight and disagree with each other about what they want. Clear precise instructions can at least highlight your choices helping relatives to make better decisions on your behalf. In 2007 only 41% of the population in the United States had a living will. In 2009 President Obama made it more popular by publically talking about his living will, saying it is a sensible choice. In 2013 only 1 in 3 people had a living will, 32%, Findlaw.com In March 2016 "American College of Emergency Physicians' stated that two thirds of Americans don't have a living will! Question of the day-Do you have a living will? Or are you part of the 2/3rd's that don't have one? Less Than One in Three Americans Have a Living Will, Says New FindLaw.com Survey http://newsroom.acep.org/2016-03-21-Nearly-Two-Thirds-of-Americans-Dont-Have-Living-Wills-Do- The living will needs resuscitation For young and old, it's wise to have a living will to state health-care wishes - The Washington Post
  19. Difficult conversations are part of healthcare. However, when the news is that a patient is terminal, it might be a bit harder of a conversation than others. One physician found himself on the receiving end of a difficult chat that spurred him to start mentoring other physicians about how to approach telling patients they’re dying. Dr. Ron Naito’s StoryDr. Naito is an internist with over 40 years of experience. When he saw the abnormal results of his blood test, he understood the prognosis. However, when he attended an appointment with his doctor, instead of learning of his formal diagnosis in a compassionate, dignified manner, he was met with attempts to dodge the results. “He simply didn’t want to tell me,” Natio said He told Indian Country Today that at one point, he overheard a specialist discussing the tumor biopsy results with a medical student outside of his exam room door. “They walk by one time, and I can hear [the doctor] say ‘5 centimeters,’” said Natio. “Then they walk the other way, and I can hear him say, ‘Very bad.’” Dr. Naito noted that the shock of this encounter still bothers him. He knew the diagnosis and prognosis because of his years as a physician. However, the lack of compassion, professionalism, and empathy in the way he found out is palpable. Dr. Naito has been using his time since his diagnosis to help educate medical students at Oregon Health & Science University how to speak to patients when the news isn’t good, which isn’t a skill many medical or nursing skills teach. How to Give Bad NewsNurses aren’t often the ones who are providing dire test results and terminal diagnoses. However, once the severity of the news wears off and the patient and family has questions, it’s often a nurse who sits at the bedside providing answers, education, and support. If you find yourself in the midst of these conversations, here are a few strategies you can use to navigate through: Show EmpathyEmpathy, not sympathy, is one of the most powerful emotions you can offer. Being able to understand and share the feelings of the patient and their loved ones can put you in an excellent position to teach and support them through a difficult time. Be HonestThese conversations are tough, but glossing over the details doesn’t help anyone. Patients deserve the full truth about their diagnosis, expected symptoms, and what the dying process might be like. One study found that only about five percent of cancer patients fully understand their prognosis. Without a thorough understanding of the disease process and what to expect, patients lack the ability to make informed decisions about their care. As a hospice nurse, I quickly learned how to navigate these difficult conversations with truth and compassion. It wasn’t always easy, but most patients appreciated the honesty. Be Open to their QuestionsYou might not know the answer to some of the questions patients have. Sometimes, you may not even be the best person to give the answer. However, letting them ask the hard questions, and providing support is paramount to your relationship with them. If you don’t know the answer, tell them honestly that you’ll need to get back to them. Always follow through and get them the information they need. Don’t Use ClichesIt can be very tempting to use phrases like, “just stay strong,” or “it will be okay.” When you are the one receiving devastating news, those words are worthless and even insensitive. Instead, use phrases like, “it’s okay to feel this way,” which supports the patient in their feelings. Show SupportPatients want to know that they have a team of healthcare professionals around them who are there to help. Your job isn’t to tell them what to do or what treatment decisions to make, but rather to support them in the decisions that are best for them. Easy ways to show your support can come through your words, but often all you need to do is be present and use active listening skills so that they know you hear them. After the Bad NewsDr. Naito is sharing his story in hopes of preventing other patients from having the same experience he had. He shared that difficult conversations can be a “heartfelt, deep experience.” We must always remember that our patients are human and have emotions and feelings about their life that we don’t understand, so being their support after the bad news is one of the most important places you can be for them. Have you ever found out a poor prognosis in a less than professional way? If so, tell us about it. Or, have you witnessed one of these conversations and had to navigate through it with the patient and their family? Let us know your thoughts about challenging conversations and how you get through them.
  20. phellandrn

    A Nurse's Thoughts On Death And Dying

    My Brother's Nurse: By Paul, RN I used to think I knew all there was to know about death. Working in the intensive care unit and emergency department presented seemingly endless opportunities to interact with patients who were about to die as well as consoling their grieving families. For instance, I have witnessed a cardiac arrest sneak in between the syllables of a patient's final unfinished word. Many patients have died underneath my arms after prolonged CPR failed to resuscitate them. I have hugged countless family members as they grieve the news that medicine could not keep their loved ones from slipping away. With each new experience, with each death of a patient, my comfort level in dealing with loss climbed. Before I knew it, I found myself bathing in new-nurse hubris, or at least that's what I call it now. I prided my ability to maintain composure in the face of heartbreak. I, the "seasoned" nurse of a year and a half, knew what to say and do to comfort people. However, no amount of hospital experience could have prepared me for the knock at my front door at 12:06 on April 10th 2010. I was out of breath, anxious, and afraid when I opened the door after being woken by the pounding sound of fist on wood. Two police officers identified themselves as members of Banning Police Department Detectives and asked my mother and I if we were Philip's family. Immediately my heart sank, my breath stolen by the realization that only few situations in life would require a police officer to wake a family up at midnight. Unable to tolerate another second in suspense I demanded they tell us what this was about as they were let inside. "I am so sorry to inform you, but Philip took his life around 4:00PM with a shotgun while shooting with his friend". I remember falling to the ground as if I no longer had legs. I started shaking, crying, and begging out loud to tell me this was a mistake. I always associated death and dying with my job. Death, however, had followed me home. As I lay there attempting to appreciate the magnitude of the situation, I could have never pictured that in the coming months and years I would witness a family completely unravel in the face of catastrophe, yet somehow find the strength to try and put the pieces of their lives back together. This is was no longer a patients' family that needed me. This was my family. As I sat on the couch with my mother in our front room listening to the detectives walk us through my brother's final day and moments, my ability to focus was made impossible by the mixture of fear, confusion, and sadness. At one point my mother interrupted the detective and asked "Is this how God answers prayers? I prayed for my child's safety, for Him to watch over my boy and this is how He answers my prayer?" I remember that statement being the only thing that could have increased my fear and anxiety further, for this was a lifelong devoted Christian woman, someone who I had never seen question her faith. With their jobs finished the detectives wished us well and were on their way. My mother went upstairs in an attempt to sleep if at all possible. I sat at our desk downstairs for the next few hours searching my heart and soul attempting to understand what would drive someone to go against the most primal of human instincts that we all posses: survival. What happened next would redefine my perceptions of grief and sorrow, and show me that I only understood the surface of the depth that pain can exist in the human heart. I turned in my chair at the sound of a door opening upstairs. I sat and watched my mother walk down the stairs, pause with three steps left, and look up at me. Her face was bright red, tears flowed, she was shaking, and barely holding onto the bannister. I walked over and hugged her as she began to cry. Words cannot describe the pain radiating from her body and voice. She began to cry out "Mama!" as if seeking her own mother for comfort. As I held her, I thought about all of the patients I had ever held as they cried over lost loved ones. My heart had sustained the emotional challenges that I have witnessed in the hospital. However, when it was my family's turn, when it was no longer a patient's mother but my own, I remember distinctly the moment my heart's defenses were insufficient. My heart had broken. I stood on those stairs for what seemed like an eternity watching the strongest person I have ever known become the weakest. We buried my brother Philip Helland five days later at the age of 25 years old. I used to think often of the family members of patients that have died. I wondered what it was like to lose a brother, father, mother, wife, friend, uncle, or aunt and what life after the loss would be like after the acute situation was over. What the grieving process truly like for them? This is something I have now experienced first hand with my own loss, with my own family. Over the next few months we would return to work and try to resume the lives we lived before. We have learned to pick each other up when one of us has a particularly rough day and have come to rely on each other's reciprocity when in need. It has now been a little under four years since Philip passed away. Even after all that time, I am amazed at the continued lessons in grief his loss has provided. I sit here in my second year of medical school and reflect on all the ways I've been taught to deal with dying patients and their family members. I remember being told that it isn't a matter of what you say, rather the simple act of trying to say anything is what counts. Sometimes all you need to offer is "presence" is another jewel passed along to new grads. One of my favorites is to never, ever tell a patient that you "understand" what they are going through. For example, to tell a patient that you "understand" why they are crying upon hearing a cancer diagnosis implies that you've not only been diagnosed with the same exact type of cancer, but also under the same circumstances as the ones the patient finds themself under. At best we can only humbly admit that we simply cannot imagine, that we really have no clue what they are going through, but that we will be here to help them in any way possible. Having now been on the receiving end I can attest that these are excellent tools. Yet, missing from my education and work experience thus far were the long-term effects of loss, the daily struggles that family members face. Hospital work placed me in the acute phase of death and the grieving process. However, the day-to-day struggles months and years out are something that must be experienced. For instance, each day I wake up and I reflexively think of my family. I hope that wherever they are, my remaining brothers are safe and taken care of. I close my eyes, picture my mom, and hope that her broken heart continues on the road to recovery, wherever that may lead. I try and picture Philip doing something goofy that he used to do. I've learned through trial and error that trying not to think about someone is a lot harder than picturing them in happiness, the latter being far less painful. Some days you wake up with an inherent sadness that necessitates a hard swallow in order to function throughout the day. Other days, the accumulation of those hard swallows is too much to bear, especially when you encounter a trigger. My triggers often surprise me. I will be driving along and a song on the radio will come on that reminds me of Philip. I will travel to a new destination that I know he would have enjoyed. I'll eat at a restaurant that I know he would have frequented. I try my best to picture him in these situations enjoying them they way I know he would, but most of the time the following thought is the terrible realization that he will never get to do, see, or taste the things I picture him doing. Regardless of the trigger, the subsequent feeling is always the same: a very visceral, sharp pain in my heart followed by a loss of breath. Each time I am uncertain if I will have the strength to recover. I usually take a long deep breath and try to focus on what I'm doing. Occasionally I find myself without the strength to do this, to keep going. It is then I am faced with the fact that my heart needs an outlet and I allow myself to cry for my brother. I would guess I run into triggers every other day, sometimes multiple times a day. I've learned that it is vital to allow myself to mourn and weep when they become overwhelming. The final aspect of loss I failed to appreciate is the inevitable hardest two days of the year: his birthday and death anniversary. As each day approaches I try to prepare myself for anything my family may experience so that I can be there for them. Maybe it's a byproduct of being a nurse, but it's much easier to care for others and anticipate their needs as opposed to your own. When he first passed away, I put on my nurse hat and compartmentalized so that I could be an effective caregiver for my family. I've learned to talk about how I am feeling with greater frequency nowadays. It remains a challenge for me to allow others to care for me without feeling like I am inconveniencing them or acknowledging that even I need someone to care for me despite my protests. Even a nurse needs a nurse from time to time I suppose. Naturally I've been asked what the hardest part about losing a brother has been. In all honesty, it's not that Philip died and is no longer with us. I have learned that death is as important as life is in the grand scheme of things. When the limitations of medicine show their face and suffering is overwhelming, a peaceful death is one of the most compassionate things you can offer a patient. I would guess most hospice workers would understand this concept. For me, the most painful part of losing my brother was not being able to be with him as he passed away. I am grateful that he no longer suffers from what was tormenting him, but the feeling of loneliness he must have felt is an overwhelming, unbearable concept for me to comprehend. I would do anything for the opportunity to be my brother's nurse. To sit at his bedside and listen to his story, to hold his hand and hug him, to remind him how wonderfully special he is, to alleviate his loneliness. Knowing Philip, he would hit the call light just to annoy me....
  21. VivaLasViejas

    The Sad Nurse Speaks

    The phone call I've been dreading comes at 0217. It's my night shift med aide, who informs me through tears that our much-loved resident, Evie*, has passed away after lingering for days in an unresponsive, but obviously uncomfortable state. She has required morphine every hour and Ativan every 2 hours around the clock, as well as sublingual atropine to combat the secretions that made her respirations sound like the rumbling of faraway thunder. At this same time, I can hear the death throes of my 14-year-old cat, Katie, who lies on a soft blanket at the foot of my bed. She's been in delicate health for the past year or so, but until Thursday night she was still eating, drinking, and using the litterbox. Now she is on her way over the Rainbow Bridge, and all my husband and I can do is wait for the end and wish they had hospice for pets.... Sometime around dawn, I hear him get up and shuffle around the bedroom. I ask him to check on Katie, who---like Evie--- clings to life with a tenacity we never knew she had. She's always been our little fraidy-cat, our shy girl who runs behind the sofa when guests come to visit.....what is preventing her from joining our other cats who have passed on? I think about Evie, who also fought health problems and depression for most of her later years. What, I wonder, had she been holding on for? Her family was all there at her bedside, she had lived a long and productive life......and yet she had held on until the very end with a grip that surprised even those who knew her best. I fall back into a fitful doze filled with vaguely disturbing dreams that vanish the instant I hear my husband open the bedroom door. This time, I don't even have to ask, because I know. She stopped moaning an hour ago. But of course, I am a nurse and I must see for myself, even when the departed is a beloved house pet. Perhaps because the departed is a beloved house pet. Yes, Katie is dead. Definitely. I weep for one of the best cats I've ever had. But it doesn't take more than a minute or two to realize that I'm grieving for Evie too......and for all the patients and family members and pets I've ever had to say good-bye to. For a brief moment, I almost envy them, for they suffer no more and at moments like these, the pain is almost more than I can bear; however, this thought is quickly banished lest it lead down a path best left unexplored. I watch as my husband prepares a grave for Katie in the back yard garden, under our bedroom window. Poor man, he always gets the worst job of all. He lays her shrouded body gently in the earth, and at this point I have to walk away because I cannot bear to see him cover her, to hear the dirt clods falling into the grave. Again, I think of Evie, who often quoted from the Bible, and recall the verse "from dust you came, and to dust you shall return". Strange, how we mortals think that we're so important.......and yet, when it comes right down to basics, we are but a speck of dust in the infinite expanse of eternity. From the warmth of our living room, I stand at the window and watch as the brisk November wind strips the last of the autumn leaves from our trees. They swirl madly as if trying to show off their glory before dying.....then they finally surrender to the inevitable and fall like snow, carpeting the floor of our woods in brilliant yellow. Being somewhat imaginative, I cannot help making a metaphorical connection between this scene and the sad circumstances of this day. I am a nurse, a student of science, but I have seen and experienced a great deal of death and loss in my lifetime, and I have to be able to explain these things to my heart so that I can open myself to care for another person---or creature---whom I will inevitably lose. Eventually, of course, it will be my turn to leave. And as unscientific as it sounds, it comforts me to believe that everyone I've ever loved and lost will greet me at the gates of Heaven. I look forward to hearing more stories of long-ago times from Evie and all the other elderly patients I've cared for, and to having my lost fur-babies purr on my lap once again. But for today, the skies are grey and weeping for the dead, and for those of us left behind to mourn them.
  22. Nurse Beth

    The Emotional Work of Nursing

    Just the other day, I talked with two different nurses who said they cried on the way home from work. One said that she had promised her son she'd take him to a movie after work that night, but her day was so emotionally distressing that when she got home, she apologized, hugged him, told him she loved him and to order whatever he wanted on Pay for View. Then she ordered in pizza and collapsed on the couch. The other nurse is Tiffany. Tiffany has been a StepDown unit nurse for three years, and she's my hero. Tiffany's patient was a 29 year old named Bryan with a primary brain tumor metastasized to....everywhere. The cancer had invaded his bowel to the extent that he has not had a bowel movement for seven days. He has a nasogastric tube (NG) because without it he throws up continually. He's been through chemo, radiation and every diagnostic test that exists. No surgeon will touch him. Amazingly, he refuses pain meds unless his mother is not at the bedside. The reason? He is protecting his mother by saying "No, I'm OK" whenever the nurses offer pain medication in his mother's presence. Still, three mornings this past week at around 0400, he has woken up screaming. Screaming. From pain? Nightmares? Nightmarish pain? Lately the worst pain, if he admits it at all, seems to be in his lower left leg. Bryan is a full code. His oncologist and primary, Dr. Positive, has not permitted the nurses to get Palliative Care on board. He also has not initiated The Conversation. Instead, when he rounds, he always brightly says "Well, we can do this. (and) We can try that" and beams at the mother, brother, and Bryan. Mom's eyes light up with hope but Jake, the brother, scowls. Dr. Positive is a very good oncologist, and well liked, but none of the nurses will endorse him personally. His bedside manner is unrivaled. His competence is unquestioned. So why not? Why do the nurses not endorse him? Because he is not doing his job. That part of the job where, at the end of life, the doctor needs to let the patient and family know there is not going to be a recovery. Yes, provide hope, but not false hope. Realism. For whatever reason, he will not give up when there is nothing left to be done. Tiffany believes he is misleading the family and giving false hope. Tiffany has a different vision- one where Bryan is given sufficient pain medications in his last days. Where Bryan is allowed to spend the end of his life in his home, where his beloved dog Max can snuggle in and sleep with him on the bed. Where Bryan can smell the familiar odors (if not eat) of what Mom is cooking in the kitchen. Where he can finger his own worn, blue blanket, and look out his window to the neighborhood where he grew up. Where he is allowed to die. So the other day, Tiffany had enough. She called Dr. Positive and said "You have to get real with the family. Stop giving Mom false hope. I want you to come in now. Talk to the family. Tell them they can choose hospice and Do Not Resuscitate. They are here now. I also want you to order Dilaudid around the clock." Dr. Positive replied "Ok on the Dilaudid, order what you think." Tiffany responded "No. You come in. You talk to the family. You order Dilaudid. And you change the Level of Care Orders." Guess what. He did. He did every single thing Tiffany asked. After he left, Jake went to Tiffany, bear-hugged her, and said "Thank you. Thank you. Thank you so much. No one else has done that for my brother." Bryan was transferred home that day on hospice. I don't know the end of Bryan's story yet. I do know I am humbled yet again by what nurses do. Things that the public rarely realizes. Thank you, Tiffany. You are a blessing and an inspiration. How about you? How have you seen nurses make a difference, or how have you made a difference?
  23. detrelibre

    Letting Go of A Loved One

    I'm in pain, mama. My body is failing me. I've lost my ability to speak. The hole in my throat helps me breathe - the most basic bodily function vital to our survival. The nurse comes in when the blue number on that monitor over there starts falling - he'll know that means that in some way the delivery of oxygen to my blood cells is hindered. My body constantly pulsates with pain, and I can't let you, the nurse, or anyone else know that. So I lay here, lost in the haze of what used to be my mind. Remember what the doctor said? Massive intercerebral hemorrhage. A pipe in my brain burst and the blood flooded and damaged a lot of what was inside. Hearing you sob for me was painful enough - but hearing you cheer me on with hopes that I will somehow get better is gutting. The doctor asked you to make a decision of what should be done if my heart were to stop. You chose the route that would mean everything possible would be done to keep me in this world. The nurse smiles kindly when he talks to you in the room. But behind his gentle smile I can see the sorrow. He feels deeply for you. I can see him taking our pain and making it part of his own. He turns me, he sets up my tube feeding, he cleans me when I'm wet. He smiles and talks to me knowing I can't respond. He stands by me when I have one of my seizures, ready to intervene if it's one of my big ones. You ask him if there's any chance I'll recover. That question comes from a desperate place in the mind - one that subconsciously knows the painful truth, but does not yet know how to accept it. The nurse pauses, looks down, looks back up at you. I can see him hastily sifting through the words in his mind, trying to find the most gentle arrangement to say to you. He imagines his own mother asking that same question should he ever suffer such a debilitating diagnosis as mine. "I'm not sure," he says almost in a whisper, "right now we should take things day by day". You thank the nurse for his answer, but somewhere you're not satisfied with it. Letting go is hard. Remember when I was six years old and you and dad taught me how to roller blade? You took me to get a shiny black pair of roller blades and watched and laughed as I ran to the checkout counter. The driveway was our practice spot, and my knees wobbled and shook the first time on my new skates. You told me I should let go of your hand, and I couldn't imagine doing it. Your hand gave me safety, it was the only thing between me and my inevitable demise on those roller skates. But deep down I understood that if I didn't let go, I would never be free to skate around our sun lit neighborhood. And when I finally let go of your hand, I truly understood that when you asked me to let go, it was because you loved me. I know you want me to stay close to you, mama. But I want you to know that right now, all of me hurts. Every pressure sore, every infection, every time I hear you begging and praying for things to go back to how they were. I'm still that boy you taught how to roller blade, except now it's your turn to let go.
  24. Hospice: 3 Ways Hospice at the end of life is focused on the whole person and their needs for symptom management, their psychosocial needs as relates to their significant others, and their spiritual care at the end of life. In these three case stories by a Faith Community Nurse, we see how hospice can be about much more than simply physical comfort at the end of life. A hospice team composed of nurses, aids, social workers, administration, chaplains and more, can play a part in helping the patient and family to the point of death and beyond. Hospice nurses work in different settings, often during the course of the same day, often visiting in a home, then in a nursing home, hospital or an assisted living facility. Sometimes facilities do develop a preference for one hospice agency over another, but according to the law, hospice agencies are to be presented fairly by case managers, physicians and others who have an opportunity to refer to hospice. 1. Hospice in the Nursing Home There are some nursing homes that resist hospice care. Since hospice services are included in Medicare, it is difficult to understand why there would be any resistance. Nursing homes often do a great job taking care of patients in rehab and those who are under long term care but most could benefit from expanding their care to include hospice expertise as the end of life approaches. (The Gerontologist, Vol 46, Number 3, p325-333) The FCN, Stephanie, caught up with Edward as he walked along the sidewalk with his walker outside the assisted living facility. After exchanging greetings and small talk about the weather, she asked him how his wife was doing. Mary had been suffering from Alzheimer’s Disease for several years and had experienced a recent decline with a significant loss of interest in her surroundings, as well as diminished energy, appetite and less recognition of her family and caregivers. The family had called in their Faith Community Nurse to discuss hospice but found that Edward was hesitant to take the step. As they walked along on the late summer afternoon, enjoying a cool breeze they talked about Mary’s condition. He said, “I think she would do better if she tried harder. She just needs more stimulation.” The couple had been married for over 60 years, and his longing for her, and the grief that he was already experiencing at the thought of her impending departure from this earth were clear. Mary lived at an adjacent nursing facility so they kept moving in that direction as they talked about the recent changes. “Edward, I know your family has been talking about hospice. Are you interested in talking about that? Are there any questions that I can answer for you?” “I don’t want to do that!” He exclaimed with a flash of anger. “I want to get her into rehab. That would help more than anything.” She let the topic go for the time-being as we finished the short walk and headed into Mary’s room. In subsequent days, as Mary continued to decline and spend more and more time asleep or unresponsive, the path forward became even more clear. His daughter said, “The facility is managing the end of life symptoms well, but we need hospice for dad. Hospice might give him the support he needs to change directions and let her go.” The daughter brought up the excellent point that sometimes hospice is as much for the family and the staff as it is for the patient. Sometimes there are minimal symptoms to manage, and physical problems are not the primary concern, making the support for the family a priority. Also, in a situation with a long-term resident of a nursing home, the transition to hospice can help everyone at the facility change directions to a more palliative care frame of mind with less interventional care considered. Hospice can assist the patient, the family and the facility in being on the same page. 2. Hospice in the Hospital Shirley had experienced a difficult year:a broken hip with a stay in a rehab facility, another fall with broken ribs and pneumonia, chronic pain from degenerative changes, diagnosis of atrial fib with anticoagulation therapy, a loss of mobility and function as well as a loss of many of the activities she enjoyed in life. Her husband, Carl, was a diligent caregiver, installing ramps, assistive devices, chair elevators and much more, to make their home navigable for her. In their mutual devotion they faced each day together, not without frustration but generally glad to have more time with each other. Their FCN provided support, helping to coordinate their congregation’s attention so they it decreased their sense of isolation and helped them to stay involved as much as possible. After a long stint in rehab, Shirley was finally getting out and about more and beginning to feel a little more like herself when one day she felt sick to her stomach, vomited blood and passed out. She was rushed to the hospital where she coded and was placed on life support. Her husband knew that she did not wish to have advanced interventional care but at the moment of crisis could not face “letting her go,” as the staff said. After several days on a vent with valiant attempts to prolong her life, it became abundantly clear that the end was near. The medical staff talked with Carl and the children who had gathered. They wept and mourned there in the ICU as respiratory therapy came to disconnect the ventilator. The FCN was with them and tired to provide information, assistance and support. Shirley continued to breathe after the discontinuation of life support so she was transferred to a hospice unit where their professional help aided the family during the time of transition. Shirley continued to receive optimal symptom management for respiratory distress before passing peacefully a few days later with the children and her beloved, Carl, standing at the bedside. Hospice in the hospital plays a strong role in helping make death easier and in bringing everyone together as they transition from the hyper-active interventional mode to the slower pace of accompanying someone who is on their final journey. The hospice team during this time can help the family who may struggle with how the whole end of life process has gone and who may worry about whether or not they have done the right thing in choosing hospice. 3. Hospice at Home The FCN got a call from the family. Arnold was ready for hospice care. After a 2 month battle with metastatic esophageal cancer, he and his wife were ready to change directions from interventional care to comfort care and hospice. His cancer, found in an already advanced stage, threw out complications faster than they could be addressed and brought under control so that he could qualify for any type of therapeutic regimen. After dealing with hypercoagulability that brought about ischemic pain in his feet to breathing problems related to tumor growth, they realized their time was too short to spend it in the cramped bays at the emergency room. He wanted to be at his country home, enjoyed the views from the front window, basking in the warmth of family and friends during whatever time he had left. While 27% of hospice patients are in a facility, 66% participate in hospice from their own home. (2013, National Hospice and Palliative Care Organization) Home care is truly the most common model of hospice care and when engaged early enough, allows for the time for the organization to fully deploy its range of helpful care options. After visiting with the family, the FCN let them know how to initiate hospice services with the company of their choice, smoothing the way for hospice care to come into the home after a referral from the primary doctor. Hospice at home, in the hospital or in the nursing home can serve the patient and family well as they look for ways to help everyone involved come to terms with the separation caused by death.
  25. She was 99 years old had just had a pretty severe stroke. She was brought to our rehab unit with the hope of some degree of recovery. Our staff wasn't so sure as she showed little improvement as the days rolled on. Our team of Physical and Occupational Therapists, nursing staff, Doctors, and Speech Therapists gave her great care. She was one of our pet projects. Her family who consisted of four daughters were there daily to help encourage her and us to not give up, for they knew what this little lady was like and wanted desperately for us to know her too. I felt like I did know some sense of her feisty personality because of all the stories her daughters entertained me with each time I was in the room performing nursing tasks. I learned that she had been a widow for some 30 years and had since lived alone taking care of her two-story home and even a large vegetable and rose garden. She did this adamantly refusing help and was quite firm in her wishes to NOT downsize. As she showed signs of deteriorating, the Doctor and staff gently prepared these sisters for the worst. She just looked worn out. Tired. Ready to give up. The sisters agreed that they wanted to tube feed her and IV hydrated. Then the unthinkable happened. She became unresponsive which was the result of the original bleed extending further causing irreversible damage. Through much agonizing and lots of tears, the sisters finally agreed that it was over and that they should let her go peacefully. They agreed that it would be best to stop all palliative care as they assumed she would prefer to not linger on. Well this 99 year old little gal did linger for days...and days. The Doc was just as surprised as I was but certain death would be soon. The sisters having been there for the duration were making funeral plans and reading the Bible to her. I have to admit she already looked dead and with the cheynne stokes, I was counting the minutes. Then a funny thing happened right then and there that I will never forget. This little woman opened her eyes, looked straight at me and said, "What are you trying to do, starve me to death???" I stood with my mouth open not quite knowing how to react then replied "yeah, I guess so". With that she let out a laugh that was like music from heaven. No one in the hospital could believe that she lingered for 15 days in a comotose state without hydration with a brain bleed that was extensive. The best part of this story is that this lady recovered to return home to her house, she began to garden again, and began to visit us regularly. We celebrated her 100th birthday with her family at our facility. I will never forget this miracle as long as I live. It assures me that nothing is impossible if its meant to be. Have you experienced anything like this before?