Loss, Grief, and Dying

occurs when a valued person, object, or situation is changed or inaccessible so that its value is diminished or removed. There are several types of loss, all of which everyone may experience at some time.

can be recognized by others as well as by the person sustaining the loss, for example, loss of a limb, of a child, of a valued object such as money, and of a job.

such as loss of youth, of financial independence, and of a valued environment, is experienced by the person but is intangible to others. Directly related to actual and perceived loss are physical and psychological loss. A person who loses an arm in an automobile crash suffers from both the physical loss of the arm and the psychological loss that may be caused by an altered self-image and the inability to return to his/her occupation. These losses are simultaneously physical, psychological, and actual. A person who is scarred but does not lose a limb may suffer a perceived and psychological loss of self-image.

is experienced as a result of natural developmental processes. As examples, the first child may experience a loss of status when her sibling is born the parent of a single child may experience a sense of loss when the child begins school.

is experienced as a result of an unpredictable event, including traumatic injury, disease, death, or national disaster.

occurs when a person displays loss and grief behaviors for a loss that has yet to take place. Anticipatory loss is often seen in the families of pts with serious and life-threatening illnesses and may lessen the effect of the actual loss of a family member.

an internal emotional reaction to loss. It occurs with loss caused by separation, as well as with loss caused by death. For example, many people who divorce experience grief. Loss of a body part, a job, a house, or a pet may cause grief.

the actions and expressions of that grief, including the symbols and ceremonies (including a funeral or final celebration of life) that make up the outward expression of grief.

a state of grieving from loss of a loved one.

1. shock and disbelief, 2. developing awareness, 3. restitution, 4. resolving the loss, 5. idealization, 6. outcome

are usually defined as refusal to accept the fact of loss, folowed by stunned or numb response: "No, not me."

is characterized by physical and emotional responses such as anger, feeling empty, and crying: "Why me?"

involves the rituals surrounding loss--with death, it includes religious, cultural, or social expressions of mourning, such as funeral services.

involves dealing with the void left by the loss.

is the exaggeration of the good qualities that the person or object had, followed by acceptance of the loss and a lessened need to focus on it.

the final resolution of the grief process, includes dealing with loss as a common life occurrence.

1. denial and isolation, 2. anger, 3. bargaining, 4. depression, and 5. acceptance

is abnormal or distorted; it may be either unresolved/inhibited.

a person may have trouble expressing feelings of loss or may deny them; unresolved grief also describes a state of bereavement that extends over a lengthy period.

a person suppresses feelings of grief and may instead manifest somatic (body) symptoms, such as abdominal pain/heart palpitations.

may occur suddenly as a result of an accident, injury, or illness or it may occur after a prolonged experience of debilitating disease such as cancer, acquired immunodeficiency syndrome (AIDS), or Alzheimer's disease.

• The Uniform Definition of Death Act provides a legal definition of death as follows: An individual who has sustained either (1) irreversible cessation of all functions of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards. A Harvard University Medical School committee later added that the nonreversible loss of brain fx, accompanied by the traditional signs, should be the definitive definition of death. These "Havard criteria" are generally accepted with the understanding that errors in certification of death could occur in conditions that might not permanently suspend life processes, such as from hypothermia (extreme cold), drug or metabolic intoxication, or circulatory shock. In addition, special attention must be paid when a child under the age of 5 is involved. Most protocols require 2 separate clinical examinations. The medical criteria used to certify a death are:
• *cessation of breathing
• *no response to deep painful stimuli
• *lack of reflexes (such as the gag or corneal reflex) and spontaneous movement
• These clinical signs may be further confirmed by an electroencephalogram and/or cerebral blood flow study.

• *difficulty talking/swallowing
• *nausea, flatus, abdominal distention
• *urinary and/or bowel incontinence/constipation
• *loss of movement, sensation, and reflexes
• *decreasing body temp with clod or clammy skin
• *weak, slow, or irregular pulse
• *decreasing BP
• *noisy, irregular, or Cheyne-Stokes respirations
• *restlessness and/or agitation
• *cooling, mottling, and cyanosis of the extremities and dependent areas
• As death nears, the pt may have a decreased LOC or agitated delirium. Although decreased consciousness and agitation are both normal at the end of life, they are very distressing to the pt's family.

is one that allows a person to die on his/her own terms, relatively free of pain with dignity. It is free from avoidable distress and suffering for pts, families, and caregivers. In general accord with pts' families wishes and reasonably consistent with clinical, cultural, and ethical standards. The definition of a good death varies for each pt, but there are factors important for a good death. These factors include control of symptoms, preparation for death, opportunity to have a sense of completion of one's life, and a good relationship with healthcare professionals. Nurses play a critical role in focusing the healthcare team's attention on meeting the needs of dying persons and their families.

• *the care of a dying pt should be guided by the values and preferences of the individual pt. Independence and dignity are central issues for many dying pts, particularly in the elderly. Maintaining control and not being a burden can also be relevant concerns.
• *palliative care of dying pts is an interdisciplinary undertaking that attends to the needs of both pt and family
• *care for dying pts should focus on the relief of symptoms, not limited to pain, and should use both pharmacologic and nonpharmacologic means.
• *physicians and other HC professionals, at all lvls of training, should receive in-depth, insightful, and culturally sensitive instruction in the optimal care of dying pts.
• *adequate funding for research on the optimal care of dying pts is essential to improving end of life care.

The pt denies the reality of death and may repress what is discussed. The pt may think, "They made a mistake in the diagnosis. Maybe they mixed up my records with someone else's."

The pt expresses rage and hostility and adopts a "why me?" attitude: "Why me? I quit smoking and I watched what I ate. Why did this happen to me?"

The pt tries to barter for more time: "If I can just make it to my son's graduation I'll be satisfied. Just let me live until then." Many pts put their personal affairs in order, make wills, and fulfill last wishes, such as trips, visiting relatives, and so forth. It is important to meet these wishes, if possible, because bargaining helps pts move into later stgs of dying.

The pt goes through a period of grief before death. The grief is often characterized by crying and not speaking much: "I waited all these years to see my daughter get married. And now I may not be here to see her walk down the aisle. I can't bear the thought of not being there for the wedding--and of not seeing my grandchildren."

when the stage of acceptance is reached, the pt feels tranquil. The reality of death has been accepted and the pt is prepared to die. The pt may think, "I've tied up all the loose ends: made the will, made arrangements for my daughter to live with her grandparents. Now I can go in peace knowing everyone will be fine."

an illness in which death is expected within a limited space of time, the physician is usually responsible for deciding what, when and how the pt should be told. the nurse, along with members of the clergy and other HC professionals, may be involved with these decisions and in discussing the pt's condition with him/her. Most pts want to know their diagnosis and prognosis asap so that they can begin appropriate planning and take care of business and personal affairs. It is critical for terminally ill pts and their families to have some sense of how the disease is most likely to progress and wha this will mean for the pt. All who are involved with the pt's care should know exactly what the pt and the family have been told; members of the pt's HC team need to communicate among themselves. Cultural influences may dictate how much information is desired and which family members are to be informed.

taking care of the whole person—body, mind, and spirit, heart and soul. It views dying as something natural and personal. The goal of palliative care is to give patients with life-threatening illnesses the best quality of life they can have by the aggressive management of symptoms.

is care provided for people with limited life expectancy, often in the home. While hospice care focuses on the needs of the dying, palliative care is appropriate across the spectrum of disease and illness.

can minimize difficulties by allowing individuals to state in advance what their choices would be for healthcare should certain circumstances develop.

provide specific instructions about the kinds of healthcare that should be provided or foregone in particular situations.

appoints an agent the person trusts to make decisions in the event of subsequent incapacity.

• 1. The person I want to make care decisions for me when I can’t
• 2. The kind of medical treatment I want or don’t want
• 3. How comfortable I want to be
• 4. How I want people to treat me
• 5. What I want my loved ones to know.

To prevent the improper use of cardiopulmonary resuscitation, which is designed to prevent unexpected death, some physicians will write do not resuscitate (DNR), or no code,on the chart of a patient if the patient or surrogate has expressed a wish that there be no attempts to resuscitate the patient. A do-not-resuscitate order means that no attempts are to be made to resuscitate a patient who stops breathing or whose heart stops beating. However, many physicians are reluctant to write these orders, especially when this issue is a source of conflict between the patient and family or between individual family members.

In some cases, a physician who believes the patient will not benefit from resuscitative measures may indicate verbally to the nurse that only a slow-code (or “show-code”) should be called; that is, in the case of cardiopulmonary or respiratory arrest, calling a code and resuscitating the patient are to be delayed until these measures will be ineffectual. Many healthcare institutions have policies forbidding their use. It is likely that a nurse could be charged with negligence in the event of a slow-code and resultant patient death. Slow-code = bad practice

indicates that the goal of treatment is a comfortable,dignified death and that further life-sustaining measures are no longer indicated.

A do-not-hospitalize order is being used for patients in nursing homes and other residential settings who have elected not to be hospitalized for further aggressive treatment.

is the gradual withdrawal of mechanical ventilation from a patient with a terminal illness or an irreversible condition with a poor prognosis. In some cases, competent patients decide that they wish their ventilatory support ended; more often, the surrogate decision makers for an incompetent patient determine that continued ventilatory support is futile. Although it may be expected that a patient will not be able to survive the weaning, death is never a certain outcome, and it is not unusual for a patient to initiate spontaneous respirations once ventilatory support is withdrawn and live for several hours to several days. Competent patients and family members should be prepared for all possibilities. A nurse’s role in terminal weaning is to participate in the decision-making process by offering helpful information about the benefits and burdens of continued ventilation and a description of what to expect if terminal weaning is initiated. Supporting the patient’s family and managing sedation and analgesia are critical nursing responsibilities. Unfortunately, many agencies and institutions do not have policies for this area. Nurses involved in terminal weaning should consult the literature and be familiar with the latest research.

literally means “good dying.” The two types of euthanasia are active euthanasia and passive euthanasia.

is taking specific steps to cause a patient’s death.

is defined as withdrawing medical treatment with the intention of causing the patient’s death.

U.S. law requires that a death certificate be prepared for each person who dies. The law specifies what information needs to be supplied. Death certificates are sent to local health departments, which compile many statistics from the information.The mortician assumes responsibility for handlingand filing the death certificate with proper authorities. Aphysician’s signature is required on the certificate, as well asthat of the pathologist, the coroner, and others in specialcases. The nurse’s responsibility is to ensure that the physicianhas signed a death certificate.

An examination of the organs and tissues of a human body after death. Obtaining consent for autopsy is a legal requirement. The closest surviving family member or members usually have the authority to determine whether an autopsy is performed. Some religious groups prohibit autopsies except for legal purposes. Usually the physician’s responsibility to obtain permission for an autopsy. Sometimes the patient may grant this permission before death. The nurse can assist by explaining the reasons for an autopsy. Many relatives find comfort when they are told that the knowledge gained from an autopsy may contribute to advances in medical science as well as establish the exact cause of death. If death is caused by accident, suicide, homicide, or illegal therapeutic practice, the coroner must be notified, according to law. The coroner may decide that an autopsy is advisable and can order that one be performed, even though the patient’s family has refused consent. In some cases, a death that occurs within 24 hours of admission to the hospital must be reported to the coroner.

Children do not understand death on the same level as adults do, but their sense of loss is just as great. Both terminally ill children and their siblings are likely to talk and ask questions about death in an attempt to understand it. Terminally ill children require parental love and support as well as social interaction with other children. Death of a parent or another significant person can retard a child’s development or may cause the child to regress developmentally. Children need to go through the same grief reactions as adults to accept such a loss and maintain emotional well-being.The loss of a parent by a middle-aged adult helps to prepare the adult for the loss of a spouse or significant other and to accept his or her own eventual death. Older people may lose a spouse or friends and relatives their own age. As this happens, they reminisce about life, put their lives and the purpose of living in perspective, and prepare themselves for their own inevitable death.

Family roles have an important effect on a person’s reactions to and expressions of grief. For example, the eldest sibling may feel a need to “be strong” and, therefore, may not grieve openly; a person who loses a spouse may display the same type of behavior to “protect the children.” The death of a child is a devastating experience for the family. The family needs time to accept the reality of the situation, opportunities to talk and to be listened to, and the experience of being able to express themselves behaviorally in a nonjudgmental environment. For example, the family of a terminally ill child may express feelings of guilt by wondering if they were responsible for the impending death. A sibling may suppress a guilt feeling for having wished the ill child (or a parent) dead.

A bereaved family may suffer more acutely if there is nohealth or life insurance or pension after the death of thefamily provider. Such families face not only the loss of aloved one, but also an economic loss that may further disruptfamily life. Older people especially may be placed in a difficult position because the death of a spouse may result in the decrease or even elimination of a source of retirement income for the surviving spouse. This reduction in income may lead to loss of home, community, and support systems.

Culture influences a person’s expression of grief. In many families in the Western culture, grief is a private matter shared only with the family. As such, many people internalize their feelings of grief and may not express their feelings of loss to others. On the other hand, cultural background may necessitate that the patient’s and family’s public display be emotional and distressed, with loud weeping and moaning. Although gender roles have become less differentiated in the past few decades, male and female reactions to death may differ. Whereas men are often expected to be stoic and not cry in public, women may be judged as “cold” if they do not grieve publicly. The widow who has a job may not be as emotionally distraught as the woman who needed her husband for financial and other support. Likewise, the widower who has not taken care of the children or the house may view the future more bleakly than the man who has cooked meals and changed diapers. Some ethnic traditions may be ingrained in certain people. For example, the woman may be expected to be weak and need support, whereas the man may be expected to be emotionally supportive. This varies from culture to culture and from person to person. Faith and religious practices play an important role in the expression of grief and provide comfort and solace to the person experiencing loss. At the same time, others may blame God for their suffering and the death of their loved one and turn away from God. Many people who have put spiritual matters in the background of their lives have found death to be an impetus for a return to earlier practices of religion.The thought of death also invites many to contemplate life’s big questions: Is there life after death? Is there asupreme being? And if there is a supreme being where do Istand in relationship to him/her? What is the ultimate source of meaning in my life?

The grief response often depends on the cause of death. Many deaths are sudden and involve shock as well as normal grieving in the survivors. Death from disease may generate several types of responses, including the belief that the death is a punishment (e.g., when AIDS was first diagnosed in homosexuals and drug users), terror and panic (e.g., when people are reminded of the devastation caused by plagues of earlier centuries), and guilt (e.g., when family and friends believe that they could have prevented the death).Accidental death is often associated with feelings of bad luck. The guilt response can be enormous, especially whenchildren die as the result of an accident. Death while defendinga country usually is viewed by most of society as honorableand necessary. Violent deaths occur daily, especially inlarger cities. Suicide accounts for a great number of violent deaths; in fact, among teenagers, it has become a major concern. It is also believed that many accidental deaths are actually suicides.

Caregiver Role Strain, Decisional Conflict, Ineffective Denial, Ineffective Coping, Grieving or Complicated Grieving, Hopelessness, Ineffective Family Therapeutic Regimen Management, and Powerlessness

• • Anxiety related to inability to predict how the last stage of illness will play itself out
• • Interrupted Family Processes related to stress of caring for dying mother
• • Fatigue related to constant demands of caring for dying family member
• • Fear related to perceived loss of control and increasing need to be dependent in final stages of illness
• • Deficient Knowledge related to lack of experience in caring for dying family member at home
• • Situational Low Self-Esteem related to inability to accept need for assistance as disease progresses
• • Spiritual Distress related to inability to reconcile diagnosis and pain with belief in a loving God
• • Bathing, dressing, or feeding Self-Care Deficits related to decreasing strength as terminal illness progresses

• • Demonstrate freedom to express feelings, needs, fears, and concerns
• • Identify and use effective coping strategies
• • Accept need for help as appropriate and use available resources
• • Make healthcare decisions reflecting personal values and goals; ultimately feel peaceful about role in decision making
• • Declare preferences regarding treatment options
• • Report sufficient relief of pain to interact meaningfully with family and to attend to everyday concerns
• • Experience a dignified and comfortable death
• • Resolve grief after a suitable period of mourning and resume meaningful roles and daily activities (family or significant others)

• • Often, when patients initiate conversations about dying, you may feel unprepared for their questions. They can take you by surprise, and can often lead you to believe that the patient expects a crystal ball response. Remember that the purpose of all such discussions is to keep the lines of communication open with the patient. The idea is to make the subject of dying discussible, and to communicate to the patient that it does not make you afraid to do so. An open ended statement, such as “Tell me what concerns you the most” provide a means of encouraging communication.
• • Some patients may be too fearful to ask physicians such questions. They often approach staff who they perceive as less intimidating or more approachable. The question often comes in the middle of the night, when there are no distractions, when anxiety or pain may keep the patient awake, when the patient may feel most alone with psycho-spiritual distress. In any case, it is often on the nurse’s watch when questions about dying may arise.
• • Because of the surprising nature of such questions, you may feel tempted to escape (“I’ve got to go take that patient’s vital signs right now.”), or pass the buck (“That sounds like a question for your doctor.”) Be vigilant about such impulsive behavior and realize that it only serves your own need to reduce your anxiety, but does nothing to assist the patient with his own. It is well within the scope of your professional practice as a competent nurse to provide counseling and death education, especially when the patient asks you for it or indicates an unmet need for such information and support. When in doubt, ask a question in response, such as “What do you feel about that?” or “What have you been told already?” This will accomplish several things. First, it will help you to regain your composure. The second point of asking a question is that it will give you more information about what is on the patient’s mind so that your intervention can be as specific and responsive to that patient as possible.
• • Do not provide false reassurance. It is important to remember that avoiding discussions about death robs the patient of precious time to accomplish goals that produce hope. People who are dying hope for many things even when they cannot hope for a cure, such as hope for freedom from pain, to be surrounded by love dones, and for the rest of their allotted time to be spent in meaningful pursuits.

When a patient dies, the nurse’s responsibilities include caring for the patient’s body, caring for the family, and discharging specific legal responsibilities. The latter involve ensuring that a death certificate is issued and signed, labeling the body, and reviewing organ donation arrangements, if any. After the patient has been pronounced dead, the nurse is responsible for preparing the body. The body is placed in normal anatomic position to avoid pooling of blood, soiled dressings are replaced, and tubes are removed. In most cases, it is unnecessary to wash the body; the mortician normally attends to this. Some religions strictly forbid washing of the body, whereas in others a special person must perform it. In cultures in which the family’s washing of the deceased’s body is considered the last service a family can give a loved one, the family should be given the necessary supplies and left alone in the room with the body. If an autopsy is to be performed, any tubes that were in place should not be removed. In such cases, the nurse should follow the hospital’s policy. The nurse is legally responsible for placing identification tags on either the shroud or garment the body is clothed in and the ankle to ensure that the body can be identified even if it is separated from its shroud. The nurse also places an identification tag on the patient’s dentures or other prostheses to ensure that the mortician receives these. The importance of proper and complete identification cannot be overemphasized. The patient’s body may be placed in the hospital’s morgue refrigerator if mortuary arrangements were not made before the patient’s death. If the patient died of a communicable disease, the body may require special handling to prevent the spread of disease. Requirements for such handling are usually specified by local laws and are contingent on the disease-causing organism, mode of transmission ,and other characteristics. Most often, the family is in the emergency department waiting room when death is confirmed. They are stunned, bewildered, and numb. Do not rush them from the waiting room, rather, provide them with a private place to begin their grieving. It is appropriate for the nurse who was caregiver or who took care of the patient for a prolonged period to attend the funeral. It also is appropriate for the nurse to make a followup call to the patient’s family after the funeral or memorial service to offer both concern and care for the family’s well being. Follow-up visits are important to give support to the family. If the nurse assesses that the family is not coping well, appropriate referrals should be made. If the patient was cared for by a hospice, the family is offered grief support for up to a year following the death.

The mourning survivor conducts religious rituals. (The restitution phase of Engel's model of grieving is characterized by mourning, funeral, and religious rituals. In the stage of shock and disbelief, the survivor refuses to accept the loss. Feelings of intense psychological pain occur when the survivor becomes aware of the loss. In the phase of idealization, all negative feelings toward the deceased are repressed.)

Shock (In the shock and disbelief stage, the survivor either refuses to accept the loss or shows intellectual acceptance of the loss but denies the emotional impact.)

Pain control and emotional support (End-of-life care requires comprehensive blended nursing skills and is unique to each patient's circumstances. Common priorities, however, include the need to provide vigilant pain control and emotional support.)