NF 15 Loss, Grief, and End-of-Life Care.pdf

c hap t e r 15 Loss, Grief, and End-of-Life Care http://evolve.elsevier.com/Williams/fundamental Objectives Upon completing this chapter, you should be able to do the following: Theory 1. Correlate the stages of grief and of dying with their associated behaviors and feelings. 2. Discuss the conc...

c hap t e r 15 Loss, Grief, and End-of-Life Care http://evolve.elsevier.com/Williams/fundamental Objectives Upon completing this chapter, you should be able to do the following: Theory 1. Correlate the stages of grief and of dying with their associated behaviors and feelings. 2. Discuss the concept of hospice care. 3. Identify three common fears a patient is likely to experience when dying. 4. Describe common symptoms related to physiologic changes at end-of-life stages. 5. List the common signs of impending death. 6. Illustrate the difference between the patient’s right to refuse treatment and assisted suicide. 7. Understand ethical guidelines in the Code of Ethics for Nurses regarding the patient’s right to refuse treatment, euthanasia, and assisted suicide. Clinical Practice 1. Identify ways in which you can support or instill hope in the terminally ill patient and his family. 2. Demonstrate compassionate therapeutic communication techniques with a terminally ill patient and/or his family. 3. Describe one nursing intervention for comfort care that can be implemented in a hospital or a nursing home for a dying patient for each of the following problems: pain, nausea, dyspnea, anxiety, constipation, incontinence, thirst, and anorexia. 4. Explain the reason for completing an advance directive to a terminally ill patient, as well as what “health care proxy” and “DNR/DNI”. 5. Prepare to provide information regarding organ or tissue donation in response to family questions. 6. Assist with postmortem care for a deceased patient. Skills & Steps Skill 15.1 Postmortem Care 211 Key Terms acceptance (p. 204) advance directive (p. 209) anticipatory grieving (ăn-TĬ-sĭ-pă-tō-rē, p. 200) assisted suicide (SŪ-ĭ-sīd, p. 209) autopsy (p. 211) bargaining (p. 204) bereavement (bĕ-RĒV-mĭnt, p. 200) brain death (p. 4) Cheyne-Stokes respirations (SHĀN-stōks rĕs-pĭ-RĀ-shŭns, p. 208) closure (KLŌ-zhŭr, p. 208) comfort care (p. 204) coroner (KŎR-ō-nĕr, p. 210) death (p. 201) denial (p. 204) Concepts Covered in This Chapter • • • • • Culture Palliation Family dynamics Ethics Health care law 198 durable power of attorney for health care (DŬ-ră-bŭl, p. 209) dysfunctional (dĭs-FŬNK-shŭn-ăl, p. 200) euthanasia (active, passive) (ū-thă-NĀ-zhē-ă, ĂK-tĭv, PĂ-sĭv, p. 209) grief, grieving process (p. 200) health care proxy (PRŎX-ē, p. 209) hope (p. 204) hospice (HŎS-pĭs, p. 202) loss (p. 199) obituary (ō-BĬ-chū-ĕr-ē, p. 209) palliative (păl-ē-Ā-shŭn, p. 201) postmortem (pōst MŌR-tĕm, p. 211) rigor mortis (RĬ-gŏr MŌR-tĭs, p. 212) shroud (SHRŎWD, p. 211) thanatology (thăn-ă-TŎL-ō-jē, p. 204) Loss, grief, and death are inevitable parts of life. Some losses may be expected parts of development across the life span. For example, parents may experience a sense of loss when their children move out. Other losses require adjustment processes that are more complex and may elicit strong grief reactions. Examples of Loss, Grief, and End-of-Life Care CHAPTER 15 such losses are the unexpected or early death of an important person, abrupt decrease in functional capacity, and loss of independence. There is no single “right” way of responding to loss. The response depends on many factors such as culture, previous experiences, and personal meanings attached to the loss. People in North America are living longer than ever before. Life expectancy in the United States increased by 1.7 years from 2003 to 2013. In 2013, life expectancy in the United States stood at 76.4 years for males and 81.2 years for females (Centers for Disease Control and Prevention [CDC], 2015). Canada has been experiencing the same trend; the latest data available indicate that life expectancy in Canada is 79 years for males and 83 years for females (Statistics Canada, 2012). This means that the proportion of older adults in total population will continue to increase. Nurses must be able to respond to these demographic changes and provide nursing services that relect the unique needs of this population. Death is a universally shared event. All cultures and religions have beliefs and rituals to explain and cope with death, loss, and grief. Avoiding discussions about death and dying is common in the mainstream North American cultures; death is often described using oblique expressions such as “passing away” and “passing on.” Children are commonly kept away from funerals, and most people have little contact with the dying. Many adults can state that they have never seen a dead body, and more can say that they have not been present during a death. However, there has been a recent move away from silence and denial toward a willingness to examine death as an inevitable and intrinsic part of life. NURSES’ ATTITUDES TOWARD END-OF-LIFE CARE Even nurses who provide care to critically ill or dying patients on a daily basis may have dificulty dealing with death and dying. Much like other health care professionals, nurses are primarily focused on cures and illness prevention, and they may perceive death as a professional failure rather than an intrinsic part of the life cycle. Relect on your own attitudes, feelings, values, and expectations about death in order to provide the best end-of-life nursing care. Study the professional nursing literature and other resources that discuss legal, ethical, inancial, and health care delivery issues related to this important topic. In addition, be ready to collaborate with other health care professionals to provide the dying persons with holistic care that meets their physical, psychological, social, and cultural needs. QSEN Considerations: Patient-Centered Care Support for the Dying Patient Providing support to the family, friends, and signiicant others is an integral part of end-of-life care that requires compassionate, 199 excellent communication skills, and the ability to relect carefully on your own feelings and beliefs about death and dying. Learn when and how to transition from the aggressive curative treatment to end-of-life care with palliative interventions designed to help the dying person and their loved ones through the experience of death. Think Critically What are your earliest memories of death—a pet, a relative, a friend? How was the death explained to you? Was it frightening, confusing, reassuring? What is the most prominent memory of the event? CHANGE, LOSS, AND GRIEF CHANGE Visionary family therapist Virginia Satir described loss, grief, and mourning as experiences intrinsically linked with life changes (Belvins, 2008). These are normal and often inevitable transitions over the life span. Satir further noted that, when people experience these changes, they progress through six stages: status quo, introduction of a foreign element, chaos, integration, practice, and new status quo. These are similar to the stages that Kübler-Ross, Maciejewski, and others have described as stages of grief and loss. Be aware of the processes used by patients to process change in order to support patients going through these transitions. LOSS Loss is to no longer possess or have an object, person, or capacity. It is a common occurrence in everyday life, for example, losing money, a job, one’s health, or life. Death is often described as the most dificult loss for a person to accept. A loss can be physical, such as the amputation of a leg or the inability to speak or walk after a stroke. A loss can also be psychosocial. Disiguring surgery or scarring from burns may result in an altered self-image and emotional problems. A person may lose the ability to carry out the role of homemaker or wage earner because of illness. A familiar environment and independence may be lost with a move to a nursing home. Often loss consists of both physical and psychosocial aspects. Loss can be viewed as ranging from minor to catastrophic. A person’s reaction to loss does not necessarily depend on the size of the loss; it is much more inluenced by the person’s perceived value of the loss. The experience of loss is deeply personal, and the value attached to it is a result of a complex interplay of emotional responses, personal experiences, and sociocultural inluences. For example, the loss of a pregnancy may have a different meaning to a woman who has struggled with fertility issues for a long time than it would to a woman with many children who lost an unplanned pregnancy. Only the person experiencing the loss can deine the value of the loss; set aside your 200 UNIT IV Developmental, Psychosocial, and Cultural Considerations own values, fully accept the patient’s experience of loss, and provide adequate support. GRIEF Grief is an emotional reaction to loss. The time required for the grieving process varies from one individual to another. Dying persons and their loved ones experience loss and grief when faced with a terminal diagnosis. Bereavement is the state of having suffered a loss by death. A person who is grieving may experience physical and emotional symptoms, such as crying, fatigue, changes in appetite, sleep disturbances, loneliness, and sadness (Box 15.1). When a person thinks or knows that a loss is going to occur in the future, anticipatory grieving may occur. This happens when patients and their families face a serious or life-threatening illness, and it is believed to improve their ability to cope with the loss when it occurs. Grieving may also be dysfunctional when it falls outside normal responses. In prolonged grieving, the person seems trapped in a stage and unable to progress. However, there is no actual time frame for completion of grieving, and a major loss may result in grieving for 1 to 2 years. Visible absence of grieving may be viewed by others as a good adjustment, but it often results in later psychosomatic illness. STAGES OF GRIEF Although every individual grieves in their own way, research has demonstrated that there are common themes. The grief process progresses through several distinct stages, each characterized by a set of identifying Box 15.1 Symptoms of Grief • Depression, sadness, crying, and mood swings • Fatigue, apathy, lack of interest and motivation, inability to concentrate, and inability to complete tasks • Loneliness and isolation • Sleep alterations: sleeping more or insomnia (inability to sleep) • Loss of appetite, weight loss or weight gain, and nausea • Change in sexual interest • Anxiety, shortness of breath, chest pains, rapid heartbeat, sighing, and heaviness in the chest • Feelings of helplessness, restlessness, anger, guilt, and irritability • Forgetfulness, tendency to make mistakes, and accident proneness • Confusion, disorientation (especially in older adults), and indecisiveness • Symptoms of the same illness that the deceased suffered • Sensing the loved one’s presence, hearing the voice, seeing the face, and expecting the person to walk in the door • A need to tell and retell and remember things about the loved one and the death experience behavioral and emotional responses. Every individual moves through the stages at his own pace, and may skip a stage or return to an earlier stage. Nurses have always been taught to recognize the great individuality of the grieving person and offer supportive care for the symptoms or behavior the person demonstrates, rather than anticipating what grieving response is the right one. Until recently, the hypothesis of these stages had not been investigated empirically. However, the stages of grief theory were put to the test by Maciejewski et al. (2007). Their examination of the stage theory of grief has revealed that denial is not the irst grief indicator. Instead, the loss is readily accepted, and yearning is the dominant grief indicator. This is followed by anger and depression. The ive grief indicators—denial, yearning, anger, depression, and acceptance—peak within 6 months after the loss. Reevaluate and create additional nursing plans for patients who continue to score high in these areas after 6 months. You can assist people who are grieving by accepting their feelings and behaviors and validating their loss. To validate the loss is to reassure the grieving person that the loss was important and understood. Providing a quiet presence and having a warm, caring concern for the person’s well-being and the ability to listen to the person speak about the pain and loss are supportive behaviors (Fig. 15.1). Recognize any cultural or religious rites and encourage grieving individuals to tell you what the person (or lost object) was like and what the loss means to him or her. Avoid clichés such as, “You’ll forget all about this after a while,” and never minimize the loss. Observe the patient’s nonverbal communication, and use appropriate nonverbal language such as a smile or a gentle touch. Crying may be embarrassing for the patient. A simple act of handing the patient a tissue acknowledges the acceptability of weeping. You may be uncomfortable in a situation in which you feel like crying along with the patient. The patient will not be offended by your crying and may draw support from a shared experience. You FIGURE 15.1 The nurse provides caring and comfort to the patient who experiences grief. Loss, Grief, and End-of-Life Care CHAPTER 15 can acknowledge feelings of sadness and loss, but do not invalidate or minimize patients’ feelings by making statements such as “I know just how you feel” or “Don’t cry.” As a person moves through and adjusts to the stages of the grieving process, there is a continuing change in function. With the stage of acceptance, the level of daily function improves and stabilizes. Successful movement through the grieving stages allows the grieving person to emerge with realistic memories of the event and object of grief, rediscover the meaning of life, and begin experiencing pleasure, social relationships, and activities. The time it takes to move through the stages depends on the loss and its meaning to the person. DEATH AND DYING Death as a physiologic event is typically deined by the absence of spontaneous breathing and heartbeat. Life support technologies have signiicantly altered the process of dying, and it is now possible to support basic life functions externally using pharmaceutical and mechanical support (Perrin & MacLeod, 2013). Therefore, the deinition of death is now centered on the concept of brain death, which is deined as the absence of brain activity as evidenced by the absence of electroencephalogram (ECG) waves. Brain death is characterized by three cardinal indings: coma, absence of brain stem relexes, and apnea. A patient experiencing brain death whose physiologic functioning is supported by external means is a potential donor for organ transplantation. The time to process organ collection for transplantation is precious. Know the procedures and policies in your practice areas and act in a timely manner. Death may be sudden, unexpected, and instant, as when a person is killed in an accident or dies of a sudden, unexpected health problem such as massive heart attack. It may also be the ultimate outcome of declining health over a period of time as in the case of chronic disease. Finally, death may be a result of overall loss of functional and physiologic capacities associated with normal aging. Nurses who work in an emergency department, intensive care unit, medical-surgical unit, nursing home, or hospice will each have different experiences of patients’ death and dying. In these different cases and situations, the individuals who die and those who care about them will experience different emotions and physical reactions. Cultural Considerations Cultural Views About Disclosure Many people think they have the right to know if they are dying, and nurses often do not like it if that fact is being hidden from a patient. However, always consider cultural factors that might inluence the way disclosure is handled. For example, Mexican Americans and Korean Americans are less likely to want to be told if they have a terminal illness. They also believe 201 that the family, not the patient, should make decisions about life-sustaining treatments. These beliefs need to be considered before speaking to a patient about a terminal prognosis. Each death and dying experience is unique, although some commonalities can help you provide truly satisfying care to the patient and the family (Box 15.2). END-OF-LIFE CARE WITHIN THE HEALTH CARE SYSTEM The focus in our health care system has been one of cure and the development of diagnostic, technical, and chemical interventions to treat disease and injury that often have been fatal in the past. As a result, patients may be viewed as failures of the system if they die in spite of the health care team’s best efforts. Those with terminal illness who refuse life-prolonging (or death-delaying) treatment may believe their needs will not be met in the acute care environment (Box 15.3). HOSPICE AND PALLIATIVE CARE According to the World Health Organization (WHO), the goal of palliative care is to reduce or relieve the symptoms of a disease without attempting to provide a cure (WHO, 2015a). It does not hasten or postpone death. Instead, it preserves life while accepting death Box 15.2 Standards of Care for the Terminally Ill 1. Actively involve dying patients and their loved ones in the discussion of the end-of-life care within the acceptable cultural parameters. 2. Consider the terminally ill patient’s preferences, personality, and lifestyle when planning care. Rigid rules, routines, and agency regulations should not be automatically applied. 3. Focus on the maintenance of functional capacity and alleviation of suffering through the control of symptoms, regardless of the expected length of time until death. 4. Maintain pain control as a major goal of treatment. 5. Allow the patient’s preferences and intentions regarding health care as set out in an advance directive, or by durable power of attorney for health care, to take precedence as far as the law will allow. 6. Ensure that the patient feels safe and secure with the care that is provided and with the level of communication regarding this care. 7. Provide dying patients with opportunities to spend inal moments in a personally meaningful way with people who are important to them. 8. Encourage family members and signiicant others to discuss the patient’s imminent death and their emotional needs with nurses. 9. Provide family members and signiicant others with private time with the patient before and after death as desired. 10. Allow family members to perform rituals and carry out cultural customs regarding the body after death. 202 UNIT IV Developmental, Psychosocial, and Cultural Considerations Box 15.3 Rights of the Dying Patient The person who is dying has the right to: • Be treated as a person until death • Caring human contact • Have pain controlled • Cleanliness and comfort • Maintain a sense of hope, whatever its focus • Participate in his care or the planning of it • Respectful, caring medical and nursing attention • Continuity of care and caregivers • Information about his condition and impending death • Honest answers to questions • Explore and change religious beliefs • Maintain individuality and express emotions freely without being judged • Make amends with others and settle personal business • Say goodbye to family members and signiicant others in private or with the assistance of the nurse • Assistance for signiicant others with the grief process • Withdraw from social contact if desired • Die at home in familiar surroundings • Die with dignity • Respectful treatment of the body after death as a normal and expected outcome. Palliative care interventions are designed to optimize patients’ ability to live as active and complete a life as possible until death. Competent adults suffering from incurable, life-threatening conditions may decide they no longer desire aggressive treatment such as chemotherapy, assisted ventilation, or dialysis. Instead of life-sustaining measures, the patients may choose treatment options that maximize the quality of life and improve symptom management. This does not imply that the patient will not receive any treatment. They will continue to receive treatments that support the goal of optimizing their quality of life, including complex medical and surgical interventions. The key difference is that the goal of the interventions is not to provide cure or to recover the lost function but to preserve the quality of life and alleviate suffering. Palliative care is now considered a specialty practice area in nursing, and the need for it is increasing (Mayer & Winters, 2016). Palliative care nurses are trained to provide care focused on symptom management, psychological and spiritual support, and specialized education for the patients and their families. The Hospice and Palliative Nurses Association (HPNA) offers education and specialty certiication to licensed practical nurse/licensed vocational nurses (LPN/LVNs) interested in specializing in palliative care (HPNA, 2015). Be aware that the concept of palliative care is not exclusive to the end-of-life care; it is used in a variety of practice areas when the focus of care needs to switch from the curative focus to the focus on quality of life. Hospice is both a distinct nursing practice area and a philosophy of care for the dying and their families. Care for the dying has been around as long as humans have. The modern concept of hospice care was developed in England in the early 1960s, as a reaction to the dying person’s need for care and comfort (National Hospice and Palliative Care Organization [NHPCO], 2015). A hospice originally was a medieval guest house or stopping place for travelers. Hospice care was originally conined to institutional settings. However, the name hospice is also now used to describe the specialized care provided to the dying in small clinics, houses, long-term care facilities, or the patient’s (or patient’s family’s) own home (Lakasing, Kulkarni, Sparkes, & RaviChander, 2014). The intent of hospice care is to help patients in the end stage of life, and their families, to experience the process of death with the highest quality of life and least amount of disruption as possible. To receive the greatest support and most compassionate care possible, discussion of hospice should take place as soon as the patient or the patient’s care team realizes that there is no cure for the patient’s condition and the patient is in a dying process. Educate the patients and their families about hospice and palliative care, and advocate for your patients by initiating appropriate referrals as soon as possible. The hospice philosophy is based on the acceptance of death as a natural part of life, and it emphasizes the quality of remaining life. Patients with incurable illnesses are faced with daily suffering. They not only suffer from the physical aspects of the disease, such as pain, but also from psychological, spiritual, and emotional discomfort as well. The needs of the patients and their signiicant others are met through a multidisciplinary team approach where the team provides palliative care (Nursing Care Plan 15.1). Nurses who care for dying patients have a unique opportunity to become an intimate part of their lives. Nurses can support dying patients physically and emotionally while maintaining a professional role. Whether the nurse is assisting the patient in the hospital or at home, the primary goal of hospice and palliative care is to improve quality of life, alleviate suffering, and improve the end-of-life experience for the patients and their loved ones. To achieve satisfactory outcomes, certain comfort measures are required. Palliative care requires a specialized body of knowledge and skills that can be dificult to learn because it is not focused on a “cure.” Family members are involved in this planning, and necessary support is provided to meet the needs of all those affected by the impending death (Fig. 15.2). Registered nurses (RNs) and LPNs or home health aides provide nursing and personal care; trained volunteers are used to provide a variety of respite (relief) or socialization services. Hospice care may be provided in the patient’s home, nursing home, hospital, or hospice unit. Following up with the family during the year after the death provides assistance with the grieving process. Loss, Grief, and End-of-Life Care CHAPTER 15 203 Nursing Care Plan 15.1 Care of the Dying Patient SCENARIO Mrs. Rodney is in the palliative care unit, actively dying from breast cancer with metastases. She is receiving pain medication, complains of thirst, and is expressing considerable pain. PROBLEM/NURSING DIAGNOSIS Pain is not adequately controlled/Pain related to breast cancer process and metastases. Supporting Assessment Data Subjective: Pain at a level of 8/10. Objective: Grimacing with movement, holding body rigid; advanced breast cancer with metastases. Goals/Expected Outcomes Patient and family will verify that patient has adequate pain control. Patient will verbalize relief or control of pain. Nursing Interventions Selected Rationales Evaluation Assess characteristics of pain: location, severity on a scale of 0 to 10, frequency, precipitating factors, and factors that relieve the pain. Pain management is most successful when the underlying cause of pain is identiied and treated. Is pain controlled adequately? Patient reports adequate control of pain and does not have increased BP, P, or R; diaphoresis, dilated pupils, guarding, facial mask of pain, crying or moaning, abdominal heaviness, or cutaneous irritation. Eliminate factors that precipitate Pain may be aggravated by pain (e.g., excessive noise, wrinmany factors. kled bed sheets, joint discomfort from positioning, thirst, wet bed and gown, cluttered environment, and interrupted rest). Offer analgesics on a set, aroundthe-clock schedule per physician orders. Scheduled dosing controls Gave additional analpain better than PRN dosgesia at 3:30 pm for ing does. escalating pain. Teach patient to request more analgesia before breakthrough pain becomes severe. It is easier to prevent severe pain than to curtail it once the cycle begins. Explore nonpharmacologic Combination of analgesia methods for reducing pain and and nonpharmacologic promoting comfort: measures yields the best pain control. • Back rubs • Foot rubs • Slow, rhythmic deep breathing • Imagery exercises • Relaxation exercises • Repositioning • Diversional activities such as music, TV, and games • Restful intervals between care or treatments Using imagery and breathing techniques. Refused back rub. Repositioned every hour. Watching TV. Body posture is more relaxed. Continue plan. CRITICAL THINKING QUESTIONS 1. What are some ways to help Mrs. Rodney with her pain? Should she be given additional pain medication (opioids)? 2. Some of the family members are afraid that additional opioids will hasten Mrs. Rodney’s death. What can you say to the family members? BP, Blood pressure; P, pulse; PRN, as needed; R, respirations. THE DYING PROCESS Theories of Death and Dying and Emergence of Thanatology Although dying is a personal experience that varies from one individual or group to another, the dying process has some universal themes. Multiple theories have identiied commonly seen patterns and emotions experienced by the dying persons and their loved ones: fear of dying, yearning, guilt, hope, despair, and even humor. Some theorists believe that the grieving process associated with dying goes through distinct stages. Others point out that an individual’s reaction to the threat of death is consistent with the way the person coped with dificulties in the past, and that the evolution of grief is luid rather than a linear process. Coping with death takes many forms, affecting the dying person, as well as others connected to them, including family, friends, and caregivers. Coping with 204 UNIT IV Developmental, Psychosocial, and Cultural Considerations FIGURE 15.2 The hospice nurse assists the family in saying goodbye to the dying patient. Table 15.1 Kübler-Ross Stages of Coping With Death STAGE Denial DESCRIPTION “No, not me.” The person cannot believe the diagnosis or prognosis. Denial serves as a buffer to protect the patient from an uncomfortable and painful situation. A patient may seek other opinions or believe there has been an error. Anger “Why me?” The person looks for a cause or ixes blame. Displaced anger may target physicians, nurses, family, and even God. Powerlessness to control the disease and events is an underlying issue. Bargaining “If I’m good, then I get a reward.” The wish is for extension of life, or later for relief from pain, and the person knows from experience that “good behavior” is often rewarded. Depression “It’s hopeless.” There is a sense of great loss, of the impending loss of being. People mourn losing family, possessions, responsibilities, and all they value. Acceptance “I’m ready.” The pain is gone, the struggle is over, and the patient has found peace. There is withdrawal from engagement in everyday activities and interests. Verbal communication is less important, and touch and presence are most important. death may also involve tasks or actions that the dying person must work on in the physical, social, psychological, and spiritual arenas. An example of a physical task would be to minimize physical distress such as pain. A social task might be to enhance or restore a relationship that is important to the dying person. Other examples would be updating a will, making amends, and saying goodbye to friends and loved ones. One of the most inluential theorists when it comes to exploration of death and dying was Elisabeth Kübler-Ross. In the late 1960s, she began talking with terminally ill patients and identifying their needs. She also began educating medical students, nurses, and physicians about death and the stages through which she saw terminally ill patients progress. She transformed the way the health care community and much of the public view death, and she promoted research into the areas of loss and death. Because of her pioneering work, nurses and physicians are much more sensitive to the needs of the dying patient and family. Other researchers have added to her work, and the ield of thanatology (the study of death) continues to grow. Kübler-Ross’s identiication of the stages a dying person moves through has been the foundation for understanding the dying process. Five stages, similar to those of the grief process, are described as being characteristic of dying: denial, anger, bargaining, depression, and acceptance (Kübler-Ross, 1969) (Table 15.1). The stages overlap, and as with the grieving process, the patient may move back and forth or even skip stages. In some cases the patient may “get stuck” in one stage and not move through to acceptance. Family members and patients are often at different stages. Nurses, too, move through the stages when they care for patients who are dying. Cultural Considerations Cultural Views About Death Certain cultures believe that talking about death can bring it on. This belief is found in some people from Greece, China, Italy, Korea, Mexico, and the southern African nations. The nurse must consider the patient’s cultural orientation before broaching the subject of death or terminal illness. QSEN Considerations: Patient-Centered Care Hope and the Dying Process Hope is an inner positive life force, a feeling that what is desired is possible. It takes many forms and changes as the patient declines. At irst, there is hope for a cure, then hope that treatment will be possible, next hope for prolonging life, and inally hope for a peaceful death. Open-ended questions such as, “What are you hoping for from this admission?” or “What are you hoping for today?” can allow patients to talk about their needs. You can always be supportive of hope by recognizing and afirming the wish the patient is expressing. NURSING AND THE DYING PROCESS Patients express many fears when they know they are dying, which may include fear of pain, loneliness, abandonment, the unknown, loss of dignity, and loss of control. There may also be uninished business that occupies the patient’s thoughts. The concept of comfort care focuses on identifying symptoms that cause the patient distress and adequately treating those Loss, Grief, and End-of-Life Care CHAPTER 15 symptoms. Prevention of many symptoms is possible by anticipating their likelihood. Use the nursing process to identify the existing and anticipated needs of dying patients and manage their care in accordance with their unique needs. Therapeutic communication is a crucial skill for providing high quality end-of-life nursing care (Williams, 2016). Nursing students and novice nurses are often fearful of not knowing what to say or of saying the wrong thing. To master this skill, begin by becoming comfortable with your own beliefs, values, and attitudes about death and dying. Next, read and learn about the actual dying process and observe experienced nurses talking with dying patients and grieving relatives. Be open to the dificult questions of life and death that permit patients to discuss their feelings and needs. Patients are usually sensitive as to how caregivers (and family members) react to uncomfortable subjects. Often, a patient will not bring up a subject that can be anxiety-provoking or painful to think about with family or staff members. Time and experience are the best teachers. Chapter 8 discusses speciic therapeutic communication skills in detail. A trusting relationship with the patient can develop when you are able to meet the identiied needs. Listening skills, observation, and use of nonverbal communication, touch, and presence all contribute to the patient’s sense of acceptance. Fears of isolation or loneliness decrease with nursing care that seeks to treat the patient with compassion and individuality. The family’s anxiety decreases as they see the patient responding to the care and attention of the team. Think Critically What questions that a dying person might ask would be most dificult for you to respond to? Think about what you might say in response to such questions. APPLICATION OF THE NURSING PROCESS ASSESSMENT (DATA COLLECTION) A baseline assessment and continuing data collection are essential to identify the problems and needs of the patient and his family. An admission history should determine what they have been told by the primary care provider regarding the illness and its expected course. Asking clear, open-ended questions such as, “What has your doctor told you about your condition?” or “What have you learned so far about your disease?” may help identify knowledge the patient needs to make informed decisions. Questions about advance directives regarding treatment options, resuscitation, advanced life support, and organ donation can provide information about the patient’s attitude toward death and the stage of his grief or dying reaction (e.g., denial or anger). Asking questions about religious beliefs and practices, as well as asking 205 directly “What do you hope for during this admission?” and “What are your concerns?” elicits data for the provision of comprehensive comfort care. At no time should the patient be pushed to discuss something he is obviously avoiding. A question such as, “Is there anything else you would like to talk about?” opens the door for issues the patient may wish to discuss. Use Analgesia Cautiously Does your patient have renal or hepatic dysfunction? Administration of opioid pain medication may need to be altered to avoid respiratory depression, hypotension, or central nervous system (CNS) toxicity. Consider the dosage recommendations given when a patient with renal dysfunction is prescribed an opiate. An assessment of the patient’s physical condition includes such measures as weight (with attention to usual weight), mobility, and the ability to perform activities of daily living, weakness or energy level, appetite (nausea, indigestion, or gas), bowel and bladder function, and respiratory function. Perform a detailed assessment of pain, including location, nature, and what relieves it or makes it worse. Assess pain using a numeric scale or similar method of measuring the patient’s report of pain. The frequency of pain assessment depends on many factors, such as the severity of pain and whether pain is increasing or well controlled on the current treatment regimen (see Chapter 31). The patient’s emotional condition can often be observed during the interaction, and symptoms such as anxiety, agitation, confusion, or depression may be obvious. Validating your observation with the patient allows them to speak about his feelings. Stating, “Tell me how you are coping with all this” begins to reveal strengths and needs. Begin spiritual assessment with questions that allow the patients to self-identify their spiritual beliefs and possible religious afiliations. If they identify a speciic afiliation, ask if they would like to talk to a cleric or spiritual advisor from the identiied religious or spiritual community. Even when a patient indicates “none” for religious afiliation, they may have spiritual needs. Be aware of clues and statements that may be indicative of spiritual distress such as “Why is God punishing me?” or questioning what the meaning in his life has been. NURSING DIAGNOSIS Nursing diagnoses for the dying patient vary, depending on the disease process. For example, a patient dying of end-stage renal disease will have problems with luid excess, whereas a patient dying of chronic obstructive pulmonary disease (COPD) will have problems with ineffective airway clearance. PLANNING Both the patients and their loved ones must be included in the planning of care and in establishing 206 UNIT IV Developmental, Psychosocial, and Cultural Considerations goals or outcomes. Planning should be a team effort, with all team members aware of the patient’s goals and needs. QSEN Consideration: Patient-Centered Care Care Planning The care planning process for end of life should be driven and controlled by the patient whenever possible. Agency rules and routines that are geared toward a cure should be relaxed to recognize that the goal of treatment is comfort. These would include relaxing restrictive visiting hours; eliminating routine vital signs and laboratory work; and lexible scheduling of the activities of daily living. IMPLEMENTATION Promote self-care as long as the patient is able. The patient’s loved ones can derive much satisfaction in learning to provide physical care when the patient is no longer able to be independent. Be sensitive to patient or family member reluctance to provide (or receive) what is uncomfortable for either one, such as performing perineal care for a parent. Common Problems of the Dying Patient and Nursing Management Anticipatory guidance. Anticipating death assists in preparing the family and patient by giving them guidance about physical changes, symptoms, and complications that may arise. This may also aid the patient and family in deciding about possible hospice care. End-stage symptom management. Many expected symptoms, such as pain, gastrointestinal distress, dyspnea, fatigue, cough, “death rattle,” and delirium, are related to metabolic changes at the end of life. The last few days of patient life have been studied extensively. Recognize the symptoms and be able to either alleviate them or help explain them to the patient and family. Pain control. Although nursing research has demonstrated safe and effective principles of pain control, many terminally ill patients unnecessarily die without adequate pain control. Several myths still contribute to inadequate pain relief. There is great misunderstanding about the role and possible side effects of opioid analgesia. Research suggests that nurses may still be uncomfortable with aggressive pain management because they are afraid that increasing opioid dosage may hasten death (Coyle, 2014). Patients and their loved ones may have concerns about addiction and dependency. A truly compassionate nurse studies and learns about pain management and applies those principles in daily practice. Health Promotion/Health Promotion Points The WHO Three-Step Ladder for Pain Relief The WHO (2015b) has developed a three-step ladder to follow for adequate pain relief. According to this ladder: 1. Start with nonopioid drugs + 1 adjuvant therapy. 2. If pain persists or increases, add an opioid designated for mild to moderate pain. 3. If pain persists or increases, change to an opioid designated for moderate to severe pain. The pain ladder is additive to the irst step. In other words, when changing from one step to the next, always continue the previous step(s) as well. Pain can be controlled (eliminated) in almost all cases when the medical and nursing teams work together (see Nursing Care Plan 15.1). The best way to manage pain is by a regularly scheduled pain medication regimen, augmented with PRN (as needed) medications when regularly scheduled pain medications are inadequate to achieve pain control (Wagner & HardinPierce, 2014). Carefully assess pain location, intensity, and response to medication every 2 to 4 hours, or more often if needed, to determine the necessity for increases in dosage. There is no risk of becoming addicted or of reaching a safety or effectiveness limit when narcotics are increased in response to pain for the dying patient. Patients with severe pain can receive huge doses of narcotics without respiratory depression or tolerance when the dose has been increased in response to increasing pain. Because comfort is the goal of palliative care, administering only oral medications, when feasible, is the preferred choice. However, this may not be possible as death draws near, and it is the goal to allow a pain-free death. In some cases, it may be possible to administer transdermal or rectal pain medications. The oral route and long-acting transdermal patches can also avoid the necessity of injections. Even when the patient is no longer taking luids by mouth, small amounts of concentrated pain medication can be inserted in the buccal cavity (cheek) (Table 15.2). Transdermal fentanyl (patch) has helped eliminate the burden of pain at the end of life. You may have read that this method of pain relief carries high risk, but remember that patients in severe pain may receive higher doses of pain medication safely. Sometimes this regimen is supplemented with rescue doses of morphine if pain is not controlled. Nonchemical approaches to pain relief include visualization and guided imagery, relaxation and breathing exercises, massage, music therapy, meditation, religious healing, biofeedback, hypnosis or self-hypnosis, transcutaneous electrical nerve stimulation (TENS), and hydrotherapy (e.g., whirlpool). Teach the patient one or more of these simple techniques as adjuncts to drug therapy. Provide a quiet environment and assist the patient as necessary (see Chapter 31). Some patients do not respond to the standard medicines or Loss, Grief, and End-of-Life Care CHAPTER 15 Table 15.2 Opioid Use in Patients With Renal Impairment DRUG Morphine RECOMMENDATION Use cautiously with dose adjustment and careful monitoring Hydrocodone Use cautiously with dose adjustment and careful monitoring Oxycodone Use cautiously with dose adjustment and careful monitoring Codeine DO NOT USE Methadone Safe Fentanyl Appears safe; reduce dose Meperidine DO NOT USE Propoxyphene DO NOT USE adjunct therapy. In these cases, radiation treatment, nerve blocks, implanted pumps, or surgery may be required. Dyspnea and respiratory distress. Dificult breathing may be seen early in the dying process in certain lung or heart disorders. It is also seen shortly before death, when respirations may become noisy, irregular, or labored. Respiratory distress at the end of life is considered extreme suffering, and it requires an aggressive treatment (Perrin & MacLeod, 2013). Secretions in the lungs accumulate and block the airways to contribute to noisy or rattling respirations known as “death rattle.” The patient is usually not responsive, or not aware of the dyspnea, but it is upsetting to family members. Suctioning is not effective in clearing the secretions, but medications such as a scopolamine patch or morphine can decrease secretions and ease breathing. Administering oxygen by nasal prongs may provide comfort. Constipation and diarrhea. Constipation is predictable for a patient receiving opiates, experiencing decreased luid intake and mobility, and having certain abdominal diseases. In addition to classic nursing measures for preventing constipation (see Chapter 30), consult with the primary care provider for orders for stool softeners and a standing laxative order. Suppositories and enemas, or manual disimpaction, can be avoided in most cases with careful monitoring and adherence to a laxative schedule. Anorexia, nausea, and vomiting. Anorexia, or loss of appetite, may be due to nausea, drug side effects (especially a sore mouth), the disease process, or the slowdown that occurs naturally in the dying process. Antiemetic medications are the irst choice to eliminate nausea and vomiting. Small servings, home-prepared food favorites, and attention to eliminating unpleasant sights and odors at mealtime may stimulate a poor appetite. A bad taste can be improved by frequent oral care, mouthwashes, or hard candies (sour balls). A 207 nutritionist may be helpful in suggesting food choices that are appealing and easily digested. You can do a great deal to support the patient and the family with an explanation of the dying process: that decreased intake is more comfortable for the patient than having food to digest and move through a system that is slowing down. There is also some evidence to suggest that starvation decreases the patient’s awareness of pain by producing chemicals that act as pain relievers. Weight loss is commonly seen in dying patients, but few patients complain of feeling hungry. Dysphagia (dificulty swallowing) may also be a problem. Moistening the mouth with luids or artiicial saliva may be helpful. Additional care of the dysphasic patient is presented in Chapter 27. Dehydration. As death nears, patients spend more time sleeping or in a semiresponsive state. They take in fewer and fewer luids until the question arises about providing intravenous (IV) luids or tube feedings out of concern for dehydration. Research has shown that dehydration results in less distress and pain and that hydration does not improve comfort. Dry mouth and thirst are the most common complaints, which may be induced by the drugs being administered, and these can be alleviated by small sips of luids, ice chips, lip lubrication, and moisturizing swabs when the patient is unconscious or unable to sip luids. Resulting decreased urine output means less effort to use a commode or less incontinence. This issue is best discussed before it arises, at the time advance directives are being established. It is an emotional issue, and families often have a dificult time accepting that withholding luids is more comforting than administering them. Comfort them with an explanation of how the dying person is indeed made more comfortable by withholding luids. Educate the patient’s loved ones about the beneits and burdens of hydration. Many times the course is for patients to choose what to take or to refuse further nourishment. This is referred to as “patient-endorsed intake.” Delirium. Dying patients may experience hallucinations or altered mental status. Search and address possible causes of delirium such as pain, positional discomfort, or bladder distention and address those physical problems. Discuss the delirium with the patient’s loved ones and encourage the family to talk to the patient in quiet tones while remaining calm. Impaired skin integrity. Weight loss, decreased nutrition, incontinence, and inactivity all contribute to the risk of skin breakdown. Turn and position the patient; use protective measures such as an air pressure mattress, heel or elbow protectors, and sheepskin or foam pads; and keep the skin clean and dry. An indwelling or condom catheter may be indicated to conserve the patient’s dwindling energy and to prevent skin breakdown. 208 UNIT IV Developmental, Psychosocial, and Cultural Considerations Weakness, fatigue, and decreased ability to perform activities of daily living. Increasing weakness eventually results in the patient’s becoming bed-bound. Accept the patient’s wishes regarding walking, sitting up in a chair, or remaining in bed. The dying patient is not going to get stronger or better; they get weaker and weaker, not because they are lying in bed, but because they are dying. Allow patients to do as much as possible for themselves, and provide physical care when they are no longer able. Anxiety, depression, and agitation. Emotional or psychological symptoms may be treated with appropriate drugs with good effect. Listen and use good therapeutic communication skills to allow the patient to express his fears, feelings, and needs and convey nonjudgmental acceptance (see Chapter 8). Skillful assessment of these symptoms may identify physical pain or spiritual distress that can be treated. Spiritual distress and fear of meaninglessness. Each person needs to believe that his life has had meaning; this is the spiritual nature of the dying process. A life review allows the patient to put his life in perspective. Reminiscing is one way of starting a life review. Encourage the patient to tell about family photographs or albums. Ask, “What was it like when you were a child [or worked on the farm, lived in the city, or met your wife]?” It is more important to listen than to talk. EVALUATION Evaluation is based on the identiied, patient speciic outcomes. The desired outcomes depend on which nursing diagnoses are pertinent to the patient’s situation. In most cases, the degree of comfort obtained for the patient by the nursing interventions needs to be evaluated. Was pain adequately controlled? Was tissue integrity protected? Were actions to facilitate the patient’s and family’s grieving process effective? Was the patient’s fear alleviated? Did interventions for a self-care deicit make the patient more comfortable? Answers to these questions help determine whether expected outcomes have been met. If the care plan is not effective, the plan must be revised. SIGNS OF IMPENDING DEATH PHYSICAL SIGNS As death approaches, the patient grows physically weaker and begins to spend more time sleeping. Body functions slow. Appetite decreases, and the patient may refuse even favorite foods and later luids as well. Explain to the patient and the family what to expect. Moistening the patient’s lips and mouth and providing oral hygiene will be more comforting than “pushing” food or luids. Urine output decreases, and urine becomes more concentrated. There may be edema of the extremities or over the sacrum. Incontinence may occur as patients become less aware of their surroundings. However, be alert to the possibility of urinary retention and the need for catheterization. Vital signs change as death approaches. The pulse increases and becomes weaker or thready. Blood pressure declines, and the skin of the extremities becomes mottled, cool, and dusky. Respirations become shallow and irregular. Secretions may pool in the lungs, causing respirations to sound moist. Often at the time of death, a “death rattle” of those secretions occurs. CheyneStokes respirations—respirations that gradually become shallower and are followed by periods of apnea (no breathing)—may be noted. Body temperature may rise, and the patient (if responsive) may complain of feeling hot or cold, although the extremities are cool to the touch as circulation slows. Blankets should be used as the patient desires. PSYCHOSOCIAL AND SPIRITUAL ASPECTS OF DYING As outlined in the Kübler-Ross stages of coping with dying, it is hoped that the patient will have reached the stage of acceptance as death draws closer. During this time, the patient will talk about making funeral arrangements and “putting my affairs in order.” To die with closure is to say goodbye to those people and things that are important. It may also involve saying, “I’m sorry, forgive me,” “I forgive you,” and “I love you.” It is a time when the patient may give to family and friends special memories or possessions. A life review can assist patients in telling their story and putting their life in perspective. Helping the patient write or share his life story with signiicant others allows them to keep special memories of their loved one. QSEN Consideration: Patient-Centered Care Communication at the End of Life Make sure that the communication is focused on the patient rather than the caregiver, and be mindful of cultural consideration. Allow the dying person and their loved ones to discuss the things that concern them the most, not the topics of concern to the caregivers. As individuals approach death, their spiritual needs take on greater importance. As patients ponder the meaning of their life, their beliefs about what happens to them in death take on new meaning. Religious practices and rituals have great signiicance for some patients. It is important for you to be familiar with those beliefs (see Chapter 14). Rather than impose your own religious beliefs on dying patients and family, you should assist patients in inding comfort and support in their own belief systems. An assessment of the patient’s spiritual needs is outlined in Chapter 14, and when indicated, you may collaborate with the patient’s religious representative or hospital chaplain to provide spiritual care. Loss, Grief, and End-of-Life Care CHAPTER 15 As life ebbs, the patient speaks less and is more withdrawn. Everyday activities and news are not of interest, and nonverbal communication becomes most important. Sitting with patients and using touch, such as holding their hand or stroking their hair, are most meaningful. Even when patients appear to be sleeping or nonresponsive, physical touch and presence are comforting. Always be aware of remarks you make in the presence of an unresponsive patient because they DO hear. Hearing is believed to be one of the last senses to be lost before death, and “dying” patients have awakened to report conversations by family and health care workers that they were not meant to overhear. Dying patients may exhibit confusion and disorientation. They may report dreams or visions of deceased relatives, and they usually are not frightened by these experiences. Often this is comforting, and they may speak of preparing for a journey to join loved ones. At times patients may become restless and agitated. Adequate pain and anxiety medication can ease the distress of these symptoms. Keep soft lights on in the room. Assurance that it is “OK to go” and that family members will take care of each other may ease dying individuals’ anxiety about leaving their responsibilities. As death approaches, one or more family members or signiicant others may want to remain with the dying person. Most clinical agencies support this and provide special provisions for the families of dying patients. Be available to the family and explain what to expect as death approaches, as well as how to communicate with the patient and what to do to help make the end of life as peaceful as possible. Think Critically What would you wish to include in your obituary (a notice of the death published in newspapers)? Write your own obituary, imagining at what age you would die, and what will have happened in your life (education, jobs, family) between now and the time of your death. What funeral arrangements will you make? LEGAL AND ETHICAL ASPECTS OF LIFE-AND-DEATH ISSUES Patients have rights to make decisions about their health. These rights apply to end-of-life situations, advance directives, and the designation of a health care proxy. ADVANCE DIRECTIVES An advance directive or living will is a legal document that outlines the patient’s wishes for health care preferences at that time when they may be unable to communicate their choice. A durable power of attorney for health care is a legal document that appoints a person (health care proxy) chosen by the patient to make health care decisions if the patient becomes incompetent or incapable of communication. Discussing 209 advance directives with patients opens the communication path to establish what is important to them and what they view as promoting life versus prolonging dying. Patients determine under which situations they would agree to do-not-resuscitate (DNR) or do-notintubate (DNI) orders. Their choices regarding artiicial feeding and luids, ventilators, and administration of antibiotics are documented. Life-Span Considerations Older Adults • When competent older adults have not completed an advance directive before admission, even though it may be dificult to communicate with them, they should be included in discussions and decisions about end-of-life care. • Confusion about time or place does not automatically make patients incapable of expressing their wishes and preferences. Patients with advanced chronic progressive illness can have a “Provider Orders for Life-Sustaining Treatment” (POLST) form initiated by their health care providers. The form provides orders for emergency medical personnel regarding end-of-life wishes and summarizes a person’s advance directives. Much of the debate in health care today deals with end-of-life decisions such as euthanasia, assisted suicide, adequate pain control, and death with dignity. Nurses must keep up to date on legal decisions related to these issues and continue to learn and apply new nursing theory and procedures regarding end-of-life care. They must also deal with their own feelings and values regarding patient choices to seek life-prolonging or death-seeking treatment. EUTHANASIA Euthanasia is the act of ending another person’s life to end suffering, with (voluntary) or without (involuntary) his consent. It may be called “mercy killing.” Some distinction is also made between active and passive euthanasia. Passive euthanasia occurs when a patient chooses to die by refusing treatment that might prolong life. An example would be withholding artiicial feeding or parenteral (IV) luids when the patient is unable to take them orally. It would also include not treating pneumonia with antibiotics. Honoring the refusal of life-prolonging treatment of a patient with a terminal illness is legally and ethically permissible. Active euthanasia is generally deined as administering a drug or treatment to end the patient’s life. The arguments for legal and ethical considerations regarding euthanasia are presented in Table 15.3. Assisted suicide is distinguished from active euthanasia. It is making available to patients the means to end their life (such as a weapon or drug) with knowledge that suicide is their intent. Assisted suicide has generated a great deal of debate and dialogue in health care. Nurses witness irsthand their patients’ despair, 210 UNIT IV Developmental, Psychosocial, and Cultural Considerations Table 15