Chapter 15 HospiceCare
SectionⅠdying 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 AmericanAcademy 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
Section2 Hospice care
Hospicecare(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 hospicecare (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 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 acutecare 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 orderestablished 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 oflife 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 bodytemperature 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 coordinationleads 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.
Griefis 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 griefexperience 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 individualsexperiences 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.