Loss, Grief and End-of-Life Care
People are complex, biopsychosocial beings. When they become ill, undergo diagnosis for altered health states, experience a loss, or progress into the end stage of life, their responses are the result of the complex interaction of biopsychosocial changes that occur. Because we live in a culture marked by dramatically different responses to the experiences of loss and grief, nurses often feel inadequate in planning interventions to facilitate grief management and the healing process.
The concept of loss can be defined in several ways. The following definitions have been selected to familiarize the student with the concept of loss:
- Change in status of a significant object
- Any change in an individual’s situation that reduces the probability of achieving implicit or explicit goals
- An actual or potential situation in which a valued object, person, or other aspect is inaccessible or changed so that it is no longer perceived as valuable
- A condition whereby an individual experiences deprivation of, or complete lack of, something that was previously present
Everyone has experienced some type of major loss at one time or another. Clients with psychiatric disorders, such as depression or anxiety, commonly describe the loss of a spouse, relative, friend, job, pet, home, or personal item.
- Types of Loss ;
A loss may occur suddenly (eg, death of a child due to an auto accident) or gradually (eg, loss of a leg due to the progression of peripheral vascular disease). It may be predictable or occur unexpectedly. Loss has been referred to as actual (the loss has occurred or is occurring), perceived (the loss is recognized only by the client and usually involves an ideal or fantasy), anticipatory (the client is aware that a loss will occur), temporary, or permanent.
For example, a 65-year-old married woman with the history of end stage renal disease is told by her physician that she has approximately 12 months to live. She may experience several losses that affect not only her, but also her husband and family members, as her illness gradually progresses. The losses may include a predictable decline in her physical condition, a perceived alteration in her relationship with her husband and family, and a permanent role change within the family unit as she anticipates the progression of her illness and actual loss of life.
Whether the loss is traumatic or temperate to the client and her family depends on their past experience with loss; the value the family members place on the loss of their mother/wife; and the cultural, psychosocial, economic, and family supports that are available to each of them. Box 6-1 describes losses identified by student nurses during their clinical experiences.
- Examples of Losses Identified by Student Nurses
- Loss of spouse, friend, and companion. The client was a 67-year-old woman admitted to the psychiatric hospital for treatment of depression following the death of her husband. During a group discussion that focused on losses, the client stated that she had been married for 47 years and had never been alone. She described her deceased husband as her best friend and constant companion. The client told the student and group that she felt better after expressing her feelings about her losses.
- Loss of physiologic function, social role, and independence because of kidney failure. A 49-year-old woman was admitted to the hospital for improper functioning of a shunt in her left forearm. She was depressed and asked that no visitors be permitted in her private room. She shared feelings of loneliness, helplessness, and hopelessness with the student nurse as she described the impact of kidney failure and frequent dialysis treatment on her lifestyle. Once an outgoing, independent person, she was housebound because of her physical condition and presented what her kidneys were doing to her.
Grief is a normal, appropriate emotional response to an external and consciously recognized loss. It is usually time-limited and subsides gradually. Staudacher (1987, p. 4) refers to grief as a â€œstranger who has come to stay in both the heart and mind.â€ Mourning is a term used to describe an individual’s outward expression of grief regarding the loss of a love object or person.
The individual experiences emotional detachment from the object or person, eventually allowing the individual to find other interests and enjoyments. Some individuals experience a process of grief known as bereavement (eg, feelings of sadness, insomnia, poor appetite, deprivation, and desolation). The grieving person may seek professional help for relief of symptoms if they interfere with activities of daily living and do not subside within a few months of the loss.
The grief process is all-consuming, having a physical, social, spiritual, and psychological impact on an individual that may impair daily functioning. Feelings vary in intensity, tasks do not necessarily follow a particular pattern, and the time spent in the grieving process varies considerably from weeks to years (Schultz & Videbeck, 2002).
- Five Stages of Grief Identified by Kubler-Ross
- Denial: During this stage the person displays a disbelief in the prognosis of inevitable death. This stage serves as a temporary escape from reality. Fewer than 1% of all dying clients remain in this stage. Typical responses include: No, it can’t be true, It isn’t possible, and No, not me. Denial usually subsides when the client realizes that someone will help him or her to express feelings while facing reality.
- Anger: Why me? Why now? and it’s not fair! are a few of the comments commonly expressed during this stage. The client may appear difficult, demanding, and ungrateful during this stage.
- Bargaining: Statements such as; If I promise to take my medication, will I get better? or If I get better, I’II never miss church again? are examples of attempts at bargaining to prolong one’s life. The dying client acknowledges his or her fate but is not quite ready to die at this time. The client is ready to take care of unfinished business, such as writing a will, deeding a house over to a spouse or child, or making funeral arrangements as he or she begins to anticipate various losses, including death.
- Depression: This stage is also a very difficult period for the family and physician because they feel helpless watching the depressed client mourn present and future losses. The dying patient is about to lose not just one loved person but everyone he has ever loved and everything that has been meaningful to him. (Kubler-Ross, 1971, p. 58).
- Acceptance: At this stage the client has achieved an inner and outer peace due to a personal victory over fear: â€œI’m ready to die. I have said all the goodbyes and have completed unfinished business. During this stage, the client may want only one or two significant people to sit quietly by the client’s side, touching and comforting him or her.
Several authors have described grief as a process that includes various stages, characteristic feelings, experiences, and tasks. Staudacher (1987) states there are three major stages of grief: shock, disorganization, and reorganization.
Westberg (1979) describes ten stages of grief work, beginning with the stage of shock and progressing through the stages of expressing emotion, depression and loneliness, physical symptoms of distress, panic, guilt feelings, anger and resentment, resistance, hope, and concluding with the stage of affirming reality.
Kubler-Ross (1969) identifies five stages of the grieving process including denial, anger, bargaining, depression, and acceptance; however, progression through these stages does not necessarily occur in any specific order. Her basic premise has evolved as a result of her work with dying persons.
C. End-of-Life Care
End-of-life care refers to the nursing care given during the final weeks of life when death is imminent. The American culture is marked by dramatically different responses to the experience of death. On one hand, death is denied or compartmentalized with the use of medical technology that prolongs the dying process and isolates the dying person from loved ones.
On the other hand, death is embraced as a frantic escape from apparently meaningless suffering through means such as physician-assisted suicide. Both require compassionate responses rooted in good medical practice and personal religious beliefs.
The Patient Self-Determination Act (PSDA), passed in 1990, states that every competent individual has the right to make decisions about his or her health care and is encouraged to make known in advance directives (AD; legal documents specifying care) end-of-life preferences, in case the individual is unable to speak on his or her own behalf (Allen, 2002; Robinson & Kennedy-Schwarz, 2001).