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Chapter 15 Hospice Care SectionⅠ dying and Death Death occurs when all vital organs and body systems cease to function. It is the irreversible cessation of cardiovascular, res piratory, and brain function. Brain death is an irreversible loss of all brain functions, including the brainstem. Brain death is a clinical diagnosis, and 让 can be made in patients whose hearts continue to beat and who are maintained on mechanical ventilation in the ICU. Brain death occurs when the cerebral cortex stops functioning or is irreversibly destroyed. The cerebral cortex is responsible for voluntary movement and actions, as well as for cognitive functioning. 1.unreceptivity and unresponsiticity 2.no movements or breathing 3.no reflexe 4.flat E.E.G Since the development of technology that assists in supporting life, controversies have arisen related to an exact definition of death. Questions and discussions have developed around whether brain death occurs when the whole brain (cortex and brainstem) ceases activity or when cortical function alone stops. In 1995 the Quality Standards Subcommittee of the American Academy of Neurology recommended diagnostic criteria guidelines for clinical diagnosis of brain death in adults. these criteria for brain death include coma or unresponsiveness, absence of brainstem reflexes, and apnea. Specific assessments by a physician are required to validate each of the criteria. Currently, legal and medical standards require that all brain function must cease for brain death to be pronounced and life support to be disconnected by the physician. Diagnosis of brain death is of particular importance when organ donation is an option. In some states and under specific circumstances, registered nurses are legally permitted to pronounce death. Policies and procedures may vary from state to state, among the Board of Nurse Examiners for Registered Nurses in each state, and among institutions. process of dying 1.agonal stage 2.clinical death stage 3.biological death stage Section 2 Hospice care Hospice care (or palliative care) is any form of care or treatment that focuses on reducing the severity of disease symptoms, rather than trying to delay or reverse the progression of the disease itself or provide a cure. the overall goals of palliative care are to (1) prevent and relieve suffering and (2) improve quality of the patient’s remaining life for patients with serious, life-limiting illnesses. Specific goals of hospice care (palliative care) are: 1.provide relief from symptoms, including pain. 2.regard dying as a normal process. 3.affirm life and neither hasten nor postpone death. 4.support holistic patient care and enhance quality of life. 5.offer support to patients to live as actively as possible until death. 6. offer support to family during patient’s illness and in their own bereavement. (Adapted from World Health Organization. Available at www.who.int/cancer/pallliative/ definition/en) Palliative care originated as end-of-life (EOL) care in the 1960s. Initially this care focused on providing the relief of symptoms and emotional support to the patient, family, and significant other during the terminal phase of a serious life-limiting disease. Now that phase of palliative care is called end-of-life palliative care, which is the focus of this chapter. Since its start, the scope of palliative care has greatly expanded. Now palliative care focuses on maintaining and improving the quality of life for all patients and their families during any stage of a life-limiting illness, whether acute, chronic, or terminal. According to the World Health Organization (WHO), palliative care is an approach that improves the quality of life of patients and their families who face problems associated with life-threatening illness. Palliative care aims to prevent and relieve suffering by early identification, assessment, and treatment of pain and other types of physical, psychologic, emotional, and spiritual distress. Ideally, all patients receiving curative or restorative health care should receive palliative care concurrently. Palliative care extends into the period of EOL care, as well as the bereavement period following the patient's death. Palliative care is often initiated after a person receives a diagnosis of a life-limiting illness. Ideally, the palliative care team is an interdisciplinary collaboration involving physicians, social workers, pharmacists, nurses, chaplains, and other health care professionals. Communication among the patient, the family, and the palliative health care team is important to provide optimal care. Patients receive palliative care services in the home as well as in long-term and acute care facilities. Patients receiving palliative care may also spend time in the intensive care unit (ICU). Many institutions have established interdisciplinary palliative and hospice care teams. Palliative care often includes hospice care before or at the end of life . Hospice is not a place but a concept of care that provides compassion, concern, and support for the dying. Hospice exists to provide support and care for persons in the last phases of incurable diseases so that they might live as fully and as comfortably as possible. Hospice programs provide care at the end of life with an emphasis on symptom management, advance care planning, spiritual care, and family support, including bereavement. Hospices were originally places of rest for travelers in the fourth century. In the nineteenth century a religious order established hospices for the dying in Ireland and London. The modern hospice is a relatively recent concept that originated and gained momentum in the United Kingdom in the 1960s. During the 1970s the concept of hospice was introduced into health care in the United States, and by the end of the decade, every state had hospice programs. In 1982 the Medicare hospice benefit was created, which provides families with the resources to care for their dying loved one at home. Approximately 1.5 million patients every year receive services through hospice programs. Of the annual deaths that occur in the United States, about 39% are under the care of a hospice program. More than a third of all hospice patients are 85 years of age or older and 80% are over 65. Of these patients, most (41 %) have a cancer diagnosis. Currently the median length of stay in a hospice program is 20 days. Hospice programs are organized under a variety of models. Some are hospital-based programs, others are part of existing home health care agencies, and others are freestanding or community-based, volunteer-intensive programs. However, regardless of their organization, all hospices emphasize palliative rather than curative care, and quality rather than quantity of life. Hospice care is provided in a variety of locations including the home, inpatient setting, and long-term care facilities. Hospice care can be on a part-time, intermittent, on-call, regularly scheduled, or continuous basis. Hospice services are available 24 hours a day and 7 days a week to provide help to patients and families in their homes. The inpatient hospice settings have been deinstitutionalized to make the atmosphere as relaxed a homelike as possible. Staff and volunteers are available for the patient and family. A medically supervised interdisciplinary team of professionals and volunteers provides holistic hospice services. The hospice nurse plays a pivotal role in coordination of the hospice team. Hospice nurses work collaboratively with hospice physicians, pharmacists, dietitians, physical therapists, social workers, certified nursing assistants, chaplains and other clergy, and volunteers to provide care and support to the patient and family members. Hospice nurses are educated in pain control and symptom management. Hospice care requires excellent teaching skills, compassion, flexibility, and adaptability to meet patient and family needs. The decision to begin hospice care is difficult. Several reasons for this exist. Frequently patients, families, and physicians may lack information about hospice care. Some cultural/ethnic groups may underutilize hospice due to lack of awareness of hospice services, desire to continue with potentially curative therapies, and concerns about lack of minority hospice workers. Physicians may be reluctant to give referrals because they sometimes view a patient’s decline as their personal failure. Some patients or family members see it as giving up. Admission to a hospice program has two criteria. The first criterion is that the patient must desire the services and agree in writing that only hospice care (and not curative care) can be used to treat the terminal illness. Patients in hospice programs can withdraw from the programs at any time (e.g., if their condition unexpectedly improves). The second criterion is that the patient must be considered eligible for hospice. Medicare, Medicaid, and other insurers require that two physicians certify that the patient's prognosis is terminal with less than 6 months to live. It is important to realize that the physician who certified that a hospice patient is terminal does not "guarantee" death within 6 months. Indeed, if a patient in hospice survives beyond 6 months, Medicare and other reimbursement organizations will continue to reimburse for more extended periods of treatment if patients still meet enrollment criteria. After this initial certification, only one physician (e.g., the hospice medical director) is needed to recertify the patient. END-OF-LiFE CARE End of life generally refers to the final phase of a patient's illness when death is imminent. The time from diagnosis of a terminal 山 ness to death varies considerably depending on the patient's diagnosis and extent of disease. It usually varies from a few hours to several weeks, or sometimes can be months. The Institute of Medicine defines end of life as the period of time during which an individual copes with declining health from a terminal illness or from the frailties associated with advanced age even if death is not clearly imminent. In some cases, it is obvious to health care providers that the patient is in this phase, but in other cases, they may be uncertain if the end is close at hand. This uncertainty adds to the difficulty of communicating clearly to patients and families. End-of-life care (EOL care) is the term used for issues related to death and dying, as well as services provided to address these issues. EOL care focuses on physical and psychosocial needs for the patient and the patient’s family. The goals for EOL care are to (1) provide comfort and supportive care during the dying process, (2) improve the quality of the patient's remaining life, (3) help ensure a dignified death, and (4) provide emotional support to the family. Physical Manifestations at End of Life As death approaches, metabolism is reduced and the body gradually slows down until all functions end. Generally, respirations cease first. Then the heart stops beating within a few minutes. Trauma and disease processes can affect physical manifestations at the end of life. Sensory Changes. With decreased circulation and oxygenation to the brain, there are alterations in the interpretation of sensory input. Sensory changes can include blurred vision, decreased sense of taste and smell, and decreased pain and touch perception.The blink reflex is eventually lost, and the patient appears to stare. The sense of touch decreases first in the lower extremities because of circulatory alterations. Hearing is commonly believed to be the last sense to remain intact. Circulatory and Respiratory Changes. With decreased oxygenation and altered circulation causing metabolic changes, the heart rate slows and weakens and the blood pressure falls progressively. Respirations may be rapid or slow, shallow, and irregular. Breath sounds may become wet and noisy both audibly and on auscultation. Noisy, wet-sounding respirations, termed the death rattle, are due to mouth breathing and accumulation of mucus in the airways. Cheyne-Stokes respiration is a pattern of breathing characterized by alternating periods of apnea and deep, rapid breathing. This type of breathing is usually seen as a person nears death. There is decreased circulation, especially noticeable on the skin. The extremities become pale, mottled, and cyanotic. The skin feels cool to the touch, first in the feet and legs, then progressing to the hands and arms, and finally progressing to the torso. The skin may feel warm because of an elevated body temperature related to an underlying disease process. Loss of Muscle Tone. As death becomes imminent, metabolic changes cause the muscular system to gradually weaken, leading to sluggish functional abilities. Facial muscles lose tone, causing the jaw to sag. Decreased muscle coordination leads to difficulty in speaking. Swallowing becomes increasingly difficult, and the gag reflex is eventually lost. Gastro-intestinal motility diminishes, leading to constipation, gas accumulation, distention, and nausea. The ability of the kidneys to produce urine and the urinary system to excrete urine decreases. Loss of sphincter control can lead to fecal and urinary incontinence. Psychosocial Manifestations at End of Life A variety of feelings and emotions can affect the dying patient and family at the end of life. Most patients and families struggle with a terminal diagnosis and the realization that there is no cure. The patient and the family may feel overwhelmed, fearful, powerless, and fatigued. The family’s response is dependent in part on the type and length of the illness, as well as their relationship with the person. The patient’s needs and wishes must be respected. Patients need time to ponder their thoughts and express their feelings. Response time to questions may be sluggish because of fatigue, weakness, and confusion. Bereavement and Grief Although the terms are often used interchangeably, bereavement refers to the state of loss and grief refers to the reaction to loss. Bereavement is the period of time following the death of a loved one during which grief is experienced and mourning occurs. The time spent in bereavement depends on a number of factors including how attached one was to the person who died and how much time was spent anticipating the loss. Grief is a normal reaction to loss and adapting to change. Grief is dynamic and includes both psychologic and physiologic responses following a loss. Psychologic responses can include anger, guilt, anxiety, sadness, depression, and despair. Physiologic reactions can include sleeping problems, changes in appetite, physical problems, or illness. Grief is one of the most powerful emotional states and affects all aspects of a person's life. It is a complex and intense emotional experience. Kiibler-Ross, Martocchio, and Rando have each identified stages of grie. The manner in which a person grieves depends on factors such as the relationship with the person who has died (e.g., spouse), physical and emotional coping resources, concurrent life stresses, and personality. There may be issues related to events (e.g., disease progression, caregiving activities) that occurred before the death that may affect the grief response. The grief experience for the caregiver of the patient with a chronic illness often begins long before the actual death event. This is called anticipatory grief. Acceptance of the expected loss is associated with more positive outcomes. Additional factors that affect the grief response include mental and physical health, economic resources, cultural beliefs, religious influences or spiritual beliefs, and time spent preparing for the death. Working in a positive way through the grief process helps adapt to the loss. Grief that assists the person in accepting the reality of death is called adaptive grief. Adaptive grief is a healthy response. It may be associated with grieving before a death actually occurs or when the reality that death is inevitable is known. Indicators of adaptive grief include the ability to see some good resulting from the death and positive memories of the deceased person. The grieving process takes time, energy, and work. The process of resolution in normal grief may take months to years. Goals for the grieving process both before and after the death include resolving emotions, reflecting on the dying person, expressing feelings of loss and sadness, and valuing what has been shared. Dysfunctional reactions to loss can occur, and the physical and psychologic impact of the loved one's death may persist for years. Prolonged grief disorder, formerly called complicated grief, is a term used to describe prolonged and intense mourning. Prolonged grief disorder can include symptoms such as recurrent distressing emotions and intrusive thoughts related to the loss of a loved one, severe pangs of emotion, self-neglect, and denial of the loss for longer than 6 months. It is estimated that one in five bereaved individuals experiences prolonged grief. Those who experience prolonged grief disorder are at great risk for illness and have work and social impairments. Bereavement and grief counseling is an important aspect of palliative care.the goal of a bereavement program is to provide support and to assist survivors in the transition to a life without the deceased person. Grief support should be incorporated into the plan of care for family members and significant others during the patient’s illness, as well as after the death. Patients at the end of life can also experience grief. Goals for grief resolution include patient expression of feelings related to grief, acknowledgment of the impending loss, and demonstrations of behaviors that reflect progress in grief resolution. Priority interventions for grief must focus on providing an environment that allows the patient to express feelings. Open discussion of feelings helps both the patient and family work toward resolution of the grief process. The patient should be free to express feelings of anger, fear, or guilt. The patient and family need to know that the grief reaction is normal. Respect for the patient's privacy and need or desire to talk (or not to talk) is important. Honesty in answering questions and giving information is essential. Spiritual Needs Assessment of spiritual needs in EOL care is a key consideration. Spiritual needs do not necessarily equate to religion. A person may be of no particular faith but have a deep spirituality. Many times at the end of life, patients question their beliefs about a higher power, their own journey through life, religion, and an afterlife. Some patients may choose to pursue a spiritual path. Some may not. Their individual choice needs to be respected. The patient’s and family’s preferences related to spiritual guidance or pastoral care services should be noted and appropriate referrals made. Deep-seated spiritual beliefs may surface for some patients when they deal with their terminal diagnosis and related issues. Spiritual distress may occur. Characteristics of spiritual distress include anger toward God or a higher being, change in behavior and mood, desire for spiritual assistance, displaced anger toward religious representatives, or display of “gallows umor.” Spirituality has been associated with decreased despair in patients at the end of life. Some dying patients are secure in their faith about the future. It is common to observe patients relinquishing material values of life and focusing on values they believe will lead them on to another place. Many turn to religion because religion may provide order to the world even in the presence of physical decline, social losses, suffering, and impending death. It may offer an existential meaning that provides a sense of peace and recognition of one's place in the broader cosmic context. Hospice care, palliative care, and home care focus on support and care of the dying person and family, with the goal of facilitating a peaceful and dignified death. Hospice care is based on holistic concepts that emphasize care to improve the quality of life rather than cure. The hospice movement was founded by the physician Cecily Saunders in London, England, in 1967 and was later extended to the United States by Sylvia Lack, also a medical doctor. The principles of hospice care can be carried out in a variety of settings, the most common being the autonomous hospice and the hospice-based palliative care unit. Palliative care is special care that is challenging and requires skillful interpersonal relationships and compassion. Services range from comprehensive to a focus on selected areas, such as symptom control and pain management, in some palliative care units. Home care services for the dying client maintain the client in the natural home environment until that is no longer possible or until death. Hospice care is always provided by a team of both health professionals and nonprofessionals to ensure a full range of care services. Meeting Physiologic Needs of the Dying Client The physiologic needs of people who ate dying are related to a slowing of body processes and to homeostatic imbalances. Interventions include providing personal hygiene measure; controlling pain; relieving respiratory difficulties; assisting with movement, nutrition, hydration, and elimination; and providing measures related to sensory changes. Problem and Nursing Interventions 1.Ineffective Airway Clearance (1)Fowler's position, conscious clients (2)Throat suctioning, conscious clients (3)Lateral position: unconscious clients 2.Self Care Deficit: Bathing/Hygiene Frequent baths and linen changes if diaphoretic Mouth care as needed for dry mouth 3.Impaired Physical Mobility (1)Assist client out of bed periodically, if client is able Regularly change bedridden client's position (2)Support client's position with pillows, blankets rolls, or towels as needed (3)Elevate client's legs when sitting up, to prevent pooling of blood 4.Altered Nutrition: Less than Body Requirements Antiemetics or small amount of alcoholic beverage to stimulate appetite 5.Constipation (1)Encourage liquid foods as tolerated (2)Dietary fiber as tolerated (3)Laxatives as needed to prevent constipation 6.Altered Urinary Elimination (1)Skin care in response to incontinence of urine or feces (2)Bedpan, urinal, or commode chair within easy reach (3)Call light within reach for assistance onto bedpan or commode (4)Absorbent pads placed under incontinent client; linen changed as often as needed (5)Catheterization, if necessary (6)Keep room as clean and odor-free as possible 7.Sensory/Perceptual Clients prefer a light room 8.Alterations: Visual , Tactile (1)Hearing is not diminished: speak clearly and do not Whisper (2)Touch is diminished, but client will feel pressure of touch Pain control Pain control is essential to enable clients to maintain some quality tin their life and their daily activities, including eating, moving, and sleeping. Many drugs have been used to control the pain associated with terminal illness, morphine, methadone, alcohol, marijuana, and: so on. Usually the physician determines the dosage, but the client's opinion should be considered; the client is the one ultimately aware of personal pain tolerance and fluctuations of internal states. Because physicians usually prescribe dosage ranges· for pain medication, nurses use their own judgment as to the amount and frequency of pain medication in providing client relief. Because of decreased blood circulation, analgesics may be administered by intravenous infusion or sublingually, rectally, or transdermally rather than subcutaneously or intramuscularly. Providing Spiritual Support Spiritual support is of great importance in dealing with death. Although not all clients identify with a specific religious faith or belief, the majority has a need for meaning in their lives, particularly as they experience a terminal illness. The nurse has a responsibility to ensure that the client's spiritual needs are attended to, either though direct intervention or by arranging access to individuals who can provide spiritual care. Nurses need to be aware of their own comfort with spiritual issues and be clear about their own ability to interact supportively with the client. Nurses have a responsibility for not imposing their own religious or spiritual beliefs on a client but to respond to the client in relation to the client's own background and needs. Communication skills are most important in helping the client articulate needs and in developing a sense of caring and trust. Specific intervention may include facilitating expressions of feeling, meditation, reading:, and discussion with appropriate spiritual adviser. It is important for nurses to establish an effective interdisciplinary relationship with spiritual support specialists. Supporting the Family The most important aspects of providing support to the family members of a dying client involve using therapeutic communication to facilitate their expression of feelings. When no interventions can reverse the inevitable dying process, the nurse can provide an empathetic and caring presence. The nurse also serves as a teacher, expect. Due to the effects of the stress of moving through the grieving process, family members may not absorb what they are told and need to have information provided repeatedly. The nurse must have a calm and patient demeanor. Postmortem Care Rigor mortis is the stiffening of the body that occurs about 2 to 4 hours after death. It results from a lack of adenosine triphosphate (ATP), which is not synthesized because of a lack of glycogen in the body. A TP is necessary for muscle fiber relaxation. Its lack causes the muscles to contract, which in turn immobilizes the joins. Rigor mortis starts in the involuntary muscles (heart, bladder, and so on), then progresses to the head, neck, and trunk, and finally reaches the extremities. Because the deceased person's family often wants to view the body, and because it is important that the deceased appear natural and comfortable, nurses need to position the body, place dentures in the mouth, and close the eyes and mouth before rigor mortis sets in. Rigor mortis usually leaves the body about 96 hours after death. Algor mortis is the gradual decrease of the body's temperature after death. When blood circulation terminates and the hypothalamus ceases to function, body temperature falls about 1°C per hour until it reaches room temperature. Simultaneously, the skin loses its elasticity and can easily be broken when dressings and adhesive tape are removed. After blood circulation has ceased, the red blood cells break down, releasing hemoglobin, which discolors the surrounding tissues. This discoloration, referred to as livor mortis, appears in the lowermost or dependent areas of the body. Tissues after death become soft and eventually liquefied by bacterial fermentation. The hotter the temperature, the more rapid the change. Therefore, bodies are often stored in cool places to delay this process. Embalming prevents the process through injection of chemicals into the body to destroy the bacteria. It may be responsible for nurses to care of a body after death. Postmortem care should be carried out according to the policy of the hospital or agency. Because care of the body may be influenced by religious law, the nurse should check the client's religion and make every attempt to comply. If the deceased's family or friends wish to view the body, it is important to make the environment as clean and pleasant as possible and to make the body appear natural and comfortable. All equipment, soiled linens, and supplied should be removed from the bedside. Some agencies, tubes, and others may be removed. Normally the body is placed in a supine position with the arms either at the sides, palms down, or across the abdomen. One pillow is placed under the head and shoulders to prevent blood from discoloring the face by settling in it. The eyelids are closed and held in place for a few seconds so they remain closed. Dentures are usually inserted to help give the face a natural appearance. The mouth is then closed. Soiled areas of the body are washed; however, a complete bath is not necessary, because the body will be washed by the mortician. Absorbent pads are placed under the buttocks to take up any feces and urine released because of relaxation of the sphincter muscles. A clean gown is placed on the client, and the hair is brushed and combed. Tle top bed linens are adjusted neatly to cover the client to the shoulders. Soft lighting and chair are provided for thefamily. In the hospital, after the body has been viewed by the family, additional identification tags are applied. The body is wrapped in a shroud, a large piece of plastic or cotton material used to enclose a body after death. Identification is then applied to the outside of the shroud. The body is taken to the morgue if arrangements have not been make to have a mortician pick it up from the client's room.