Loss, Grief, and End-of-Life Care
In this sad world of ours, sorrow comes to all… It comes with bittersweet agony… [Perfect] relief is not possible, except with time. You cannot now realize that you will ever feel better… And yet this is a mistake. You are sure to be happy again. To know this, which is certainly true, will make you feel less miserable now.
—Abraham Lincoln
Learning objectives
After studying this chapter, you should be able to:
Discuss the concepts of loss, grief, and end-of-life care.
Describe at least three types of losses that an individual can experience.
Explain the grief process.
Differentiate between normal and unresolved or dysfunctional grief.
Define advance care planning.
Articulate the needs of dying persons and their survivors.
State the rationale for The Dying Person’s Bill of Rights.
Compare the perceptions of death by children during various growth stages.
Key Terms
Advance care planning
Advance directive
Anticipatory grief
Bereavement
Durable health care power of attorney
Dying declaration exception to hearsay
The Dying Person’s Bill of Rights
Dysfunctional grief
End-of-life care
Grief
Grief process
Health care directive
Health care proxy
Hospice care
Living will
Loss
Mourning
Palliative care
Patient Self-Determination Act
Suffering
Unresolved grief
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.
This chapter provides information to familiarize the student with the concepts of loss, grief, and end-of-life care as they are experienced by individuals, families, and/or their significant others.
Loss
Loss is one of the most important issues experienced during one’s lifetime. 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 7-1 describes losses identified by student nurses during their clinical experiences.
Grief
Grief, mourning, and bereavement are closely related to loss, and sometimes the terms are used interchangeably. Grief is a normal, appropriate emotional response to an external and consciously recognized loss. It is usually time-limited and subsides gradually. Staudacher (2000) refers to grief as a stranger who has come to stay in both the heart and mind. Anticipatory grief refers to the reactions that occur when an individual, family, significant other, or friends are expecting a loss or death to occur. It includes all of the thinking, feeling, cultural, and social reactions that occur regarding a loss or death. Anticipatory grief allows the individual and others to get used to the reality of the loss or death and to complete unfinished business (eg, saying “good-bye,” “I love you”). 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).
Box 7.1: 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 after 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 body image and social role as the result of a below-the-knee amputation. The client was a 19-year-old girl who was involved in a motorcycle accident. She had shared her feelings with the student nurse about her “new” body image and dating after hospitalization.
Loss of a loved one owing to fetal demise or intrauterine death. The student nurse had been assigned to a young woman, who was in her twenty-eighth week of pregnancy and delivered a preterm newborn who died immediately after birth. The following day, the client expressed a sincere thanks to the student nurse for supporting her during such a difficult time in her life.
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 “resented what her kidneys were doing to her.”
Grief Theory
Grief theory proposes that grief occurs as a process. 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).
Several authors have described grief as a process that includes various stages, characteristic feelings, experiences, and tasks. Staudacher (2000) states there are three major stages of grief: shock, disorganization, and reorganization. Westberg (2004) 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. Kübler-Ross (1969) identifies five stages of the grieving process: 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. The creation of hospices, palliative care, and programs on pain management has been attributed to the work of Kübler-Ross. The care of the dying is in the forefront of medicine and the voices of the dying are increasingly recognized (Munoz, 2004). Box 7-2 discusses Kübler-Ross’s five stages of the grief process.
Unresolved or Dysfunctional Grief
Unresolved or dysfunctional grief could occur if the individual is unable to work through the grief process after a reasonable time. The cause of dysfunctional grief is usually an actual or perceived loss of someone or something of great value to a person. Clinical features or characteristics include expressions of distress or denial of the loss; changes in eating and sleeping habits; mood disturbances, such as anger, hostility,
or crying; and alterations in activity levels, including libido (sex drive). The person experiencing dysfunctional grief idealizes the lost person or object, relives past experiences, loses the ability to concentrate, and is unable to work purposefully because of developmental regression. The grieving person may exhibit symptoms of anxiety (Chapter 19), depression (Chapter 21), or psychosis (Chapter 22). Kishiyama (2004) lists practical tips for clients’ experiencing grief. Paraphrased, they include:
or crying; and alterations in activity levels, including libido (sex drive). The person experiencing dysfunctional grief idealizes the lost person or object, relives past experiences, loses the ability to concentrate, and is unable to work purposefully because of developmental regression. The grieving person may exhibit symptoms of anxiety (Chapter 19), depression (Chapter 21), or psychosis (Chapter 22). Kishiyama (2004) lists practical tips for clients’ experiencing grief. Paraphrased, they include:
Allowing oneself to experience feelings of pain, anger, etc.
Sharing personal feelings with others
Talking out loud to one’s loved one to release feelings
Maintaining or resuming a daily schedule or routine to avoid feeling overwhelmed
Avoiding the use of alcoholic beverages to avoid feeling more depressed
Sleeping, eating, and exercising regularly
Delaying the making of any major decisions immediately after the loss
Asking for help to deal with a loss to avoid unresolved or dysfunctional grief
Self-Awareness Prompt
Identify at least one loss that you or a member of your family has experienced. Was it an actual, perceived, or anticipated loss? How did you and/or members of your family respond to the loss? What type of support, if any, was offered to help you with the grief process? Was it sufficient to meet the needs of yourself and/or members of your family?
Box 7.2: Five Stages of Grief Identified by Kübler-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” (Kübler-Ross, 1971, p. 58).
Acceptance: At this stage the client has achieved an inner and outer peace due to a personal victory over fear: “I’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.
End-of-Life Care
The following statement was retrieved from the Aging with Dignity organization’s Web site (http://www. agingwithdignity.org):
Something is terribly wrong: The majority of Americans want to die at home surrounded by family and friends, but most end up dying in the hospital or nursing home, cared for by strangers. Half of these Americans die in pain that could have been treated. Sick people have come to fear losing their dignity or burdening their families more than they fear death. And this is all happening in a country that is meant to prize the rights of individuals and champion respect for personal wishes.
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 (ADs; 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-Schwartz, 2001). Advance directives evolved as new technologies to sustain life were being developed and a perception existed that physicians hadn’t developed good judgment on how to use this new power. The belief was that if illness or injury prevented a client from making decisions about one’s health care, the best alternative would be to follow instructions issued by the client before the onset of the illness or injury, when the individual could still think about the choice (Silverman, 2004).
has the right to make decisions about his or her health care and is encouraged to make known in advance directives (ADs; 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-Schwartz, 2001). Advance directives evolved as new technologies to sustain life were being developed and a perception existed that physicians hadn’t developed good judgment on how to use this new power. The belief was that if illness or injury prevented a client from making decisions about one’s health care, the best alternative would be to follow instructions issued by the client before the onset of the illness or injury, when the individual could still think about the choice (Silverman, 2004).
Advance Care Planning
Advance care planning is a thoughtful, facilitated discussion that encompasses a lifetime of values, beliefs, and goals for the client and family. Advance care planning often involves completion of an AD. The two most common forms of advance directives are the living will or the health care directive and the durable health care power of attorney or health care proxy (Allen, 2002; Norlander, 2001).
The living will is a document filled out by the client with specific instructions addressing issues of cardiopulmonary resuscitation (CPR); life support systems such as the use of a ventilator or intubation; tube feedings or artificial nutrition and hydration; and emergency measures such as surgery, blood transfusion, or antibiotics to treat end-stage diseases. Living wills give some guidance, but a document called Five Wishes enables all caretakers to know and understand the desires of a dying client. Each wish gives a specific desire regarding end-of-life care (Box 7-3).
A durable health care power of attorney permits an individual to name a health care decision-maker or surrogate to make medical decisions in the event that the individual is unable to make these decisions or give informed consent. If a health care power of attorney or surrogate has not been named, the law allows a health care proxy to be appointed to act on behalf of the client (eg, an individual has a stroke and is unable to communicate his wishes). Examples of health care proxies include spouses, guardians, or parents.
A unique form of advance directive, the dying declaration exception to hearsay allows statements referred to as “death bed declarations” to be honored by the medical and nursing staff. For example, a client, who is aware that death is imminent and has not completed a living will, may inform the nursing staff that he wants all medication, including intravenous (IV) therapy, to be discontinued. Such a request can be honored if documented (Scanlon, 2003).
Box 7.3: Five Wishes
Each of the following wishes makes a specific desire for the client. Five Wishes meets the legal requirements in several states. Summarized, the wishes are:
Wish 1: State the name of the person you want to make health care decisions about medical tests, treatments or surgery, or admission to a hospital, hospice or nursing home when you can’t make the decisions yourself.
Wish 2: Describe the kind of medical treatment you want or don’t want. Choices are listed for clinical situations such as a coma, near-death situation, permanent and severe brain damage without recovery, or any other condition under which the client does not wish to be kept alive.
Wish 3: State how comfortable you want to be. Several choices are given regarding activities of daily living, pain management, and relaxation techniques or interventions.
Wish 4: Describe how you want people to treat you. This wish addresses the spiritual needs of the client during the dying process, such as having someone present at bedside, having prayers said at a vigil or in church, having visits from a chaplain or one’s spiritual advisor, and expressing the desire whether to die at home or in the hospital.
Wish 5: Explain what you would like your loved ones to know. This wish addresses how the client wants to be remembered and gives him or her the opportunity to relay funeral and memorial wishes.
Sources:
Gilbert, S. (2004). Living ’til the end. Using the Five Wishes to prepare for the end of life. ADVANCE for Nurses, 5(5), 27
; and Aging With Dignity: http://www. agingwithdignity.org.Ethnic Considerations and Cultural Sensitivity
Our health care system is based on a scientific, biomedical model of disease. Many other cultures have a
more spiritual or nature-based view (Norlander, 2001
more spiritual or nature-based view (Norlander, 2001