Since everyone experiences grief at some time, our minds have adapted by developing means of adjusting to loss. Review coping mechanisms in Chapter 5, “Communicating Wellness,” to understand how these work to protect us from overload. The initial physical response to grief usually includes panic, difficulty swallowing, increased heart rate and blood pressure, exhaustion, insomnia, muscle pain, altered eating patterns, and headaches. Sadness and depression significantly lower resistance to opportunistic diseases, which may lead to physical illness in addition to emotional stress. These are the types of symptoms patients and family members bring to health care workers when they become overwhelming and are a sign that coping mechanisms are not working. Our responsibility as health care workers involves offering our strength to patients and caregivers as they learn to cope with grief (Fig. 6-1).

Theories on Dealing with Loss

When doctors had little in their black bags to actually save patients from death or disease, doctors, patients, and families seemed more willing to accept that death or disability was inevitable. As medical technology extended life by decades, death and disability were no longer seen as acceptable options, and the subjects were no longer discussed. Everyone involved during much of the 1900s felt that to acknowledge death, or even loss of an acceptable health status, was to admit defeat. Physicians rarely discussed death, and many felt it was a personal failure on their part if a patient died—a failure of both medical technology and the doctor’s proficiency. This is hard to understand, since we currently encourage open communication and patient empowerment. Some physicians still feel that to discuss death with the patient and family implies that the physician is giving up. Although the majority of patients and families want to know if death is close, or if healing is not probable, many health care professionals prefer not to acknowledge even the possibility. Not admitting that loss is near sends conflicting, or incongruent, cues of “everything is fine” and nonverbal cues that it definitely is not. Puzzled patients may think, “Your words say I am OK, but your expression says I am not.”

Since the subject cannot be avoided, the backlash against secrecy, denial, and evasion is growing. Thanatology, the study of dying and death, is as old as the practice of medicine, but its credibility as a separate topic is fairly recent. As long ago as 1895, Sigmund Freud (1856-1939), an Austrian neurologist, wrote about the subject in “Mourning and Melancholia” and cautioned that grief and loss should be faced and worked through to avoid long-term depression. For many years, most articles and discussions on the subject were written for the health care or mental health professions and were not available to the general public.

G. L. Engel was one of the first medical writers to address dying and death in a manner that those outside of the medical profession could understand. In an article for the American Journal of Nursing in 1964 entitled “Grief and Grieving,” Engel divided the grief process along these lines:

• Shock/disbelief: The “not me” stage. Patients withdraw from both physical and emotional contact and experience physical symptoms of stress or depression. Disbelief may have the benefit of delaying grief until the patient or family is better able to respond to the loss. Early disbelief and denial may be healthier and easier to manage than the panic many people experience when trying to process the shock too quickly.

• Developing awareness: The “why me” stage. Guilt and anger are normal during this phase. Guilt is more apparent if the loss was brought on by high-risk behavior or imprudent choices. Anger may be directed outward if the cause was an accident or violence.

• Restitution: This stage involves the “leave-taking” rituals surrounding loss (funerals, wakes, and so forth). Rituals give us comforting established cultural steps to follow when it is hard to make independent decisions. We know through our rituals what our society expects of us. In conservative cultures, there are usually clearly defined times and behaviors for each stage and step, such as how long to wear black as a sign of mourning, or when it is acceptable to remarry.

• Resolving the loss: coping with the feeling of loss. The bereaved describe themselves as “hollow” or “empty.” Depression is common in this step. Watch for ways to help the grieving through this difficult time.

• Idealization: Concentrating on the worth of the loss. Persons in this stage will not look realistically at what was lost and will not tolerate negative thoughts or discussions regarding the loss. Many hoard possessions and reminders of whatever or whomever they have lost. For example, an athlete who is now a paraplegic will not part with sports equipment, or a widow may keep her husband’s clothes for years.

• Acknowledgement or outcome: This final stage allows for realistic planning, saying goodbye, and tying up loose ends as the need to dwell on the loss becomes less overwhelming.

During this same time of developing public awareness of the topic of death, two prominent sociologists, Barney Glaser and Anselm Strauss, wrote “Awareness of Dying” in 1965 and “Time for Dying” in 1968. They outlined a series of steps or stages common to most issues of loss, which included shock, partial denial, denial, preparatory grief, hope, and letting go. These steps were very much like those described by Engel, and later by Dr. Elisabeth Kübler-Ross (see below). Glaser and Strauss, and others who wrote at this time regarding loss, seemed focused not so much on death as on receiving catastrophic news. Their theory seems true, as we will see when patients are told they have a debilitating or life-changing disease or disorder, whether or not it is life-threatening.

Dr. Elisabeth Kübler-Ross, a Swiss-born American psychiatrist, brought the discussion into the open and made the general public aware of the debate. Dr. Kübler-Ross wrote extensively on grief, including “On Death and Dying” in 1969, “Questions and Answers on Death and Dying” in 1974, and “Living with Death and Dying” in 1981, among others. Dr. Kübler-Ross wrote her articles on a level that the public could understand and made us aware that death and loss are stages of life to be worked through, and that open discussion helps everyone to cope with this unavoidable issue.

Although there are many detractors and philosophical disagreements about Dr. Kübler-Ross’s theories, the steps or stages she outlined include the following.

• Denial, refusing to accept the loss: Expect statements such as, “No, this can’t be!” “You are wrong!” “Those are not my test results!” Patients may ask for more tests, second opinions, more surgery. Survivors may demand or refuse to see the deceased, hoping that if they refuse to believe what they see and hear that this loss will not be true.

• Anger at everyone and everything: “Why did you let this happen to me?” “Why me?” Anger may be directed at the physician, at caregivers and loved ones, or at a Supreme Being. In many cases, anger is directed inward if the loss was caused by imprudent choices. Anger may become hostility as the griever withdraws from others who are not grieving and thinks, “How dare they be happy when I am so sad.” Patients or caregivers in this step may refuse your compassion; however, remain available for comfort when you sense they may need you.

• Bargaining, trying to delay or avoid the inevitable: The bereaved may think, “If I follow the treatment plan, maybe I will get better.” “If I pray hard enough, maybe it will go away.” “Please let me live until June.” (Note: Even if death is near in the first three stages, patients probably will prefer not to sign a DNR order or participate in a “Living Will.”)

• Depression, the feeling of sadness, loneliness, or despair that accompanies loss: Continue to reach out during the depression stage; some patients need to talk and others prefer to retreat. Patients and survivors have a right to be depressed; denying them this step may disrupt the process. Be available for their needs. Remember the physiological effects of depression and be alert for ways to relieve the signs and symptoms.

• Acceptance, recognizing the inevitability of the loss: Persons in this stage begin to put their affairs in order. For the dying patient, the outside world begins to lose its meaning. These patients may be very self-centered as they reserve their remaining days. They are disengaging emotionally from the world and may prefer to have only one or two close relations around; some even exclude those they love. Peace and acceptance are more likely if the patient looks at the past with satisfaction, if goals have been met, and if resources are adequate for the final days and for the survivors. Survivors in the acceptance stage begin to make realistic plans for the coming changes.

Controversy still surrounds Kübler-Ross’s work, but authorities in thanatology agree that she opened the discussion about death and grief that was desperately needed.

Each person experiences the stages of grief over varying lengths of time spent in each phase. There is no particular sequence from one step or stage to another. There are also frequent regressions to stages already experienced. Some stages are passed through quickly or not at all. For example, persons who are grieving may progress through denial and anger to bargaining, then back again to anger before progressing to other stages. Time spent in the stages or steps is intensely personal and inconsistent and cannot be hurried. Do not try to force bereavement into a generic formula and do not psychoanalyze the patient’s or family’s responses.

Most authorities agree that how we cope with stress throughout life helps predict how we will cope with grief. Coping mechanisms are covered in Chapter 5, “Communicating Wellness,” but for our purposes we can presume that someone who has coped by denial all of his or her life will now spend most of the grieving time in denial. The person who reacts with anger to any frustration will become enraged at this thing so beyond personal control. Likewise, someone who is easily depressed may remain in the depression stage without progressing beyond that stage. Much depends also on how many other stressors are being juggled at the same time. For example, will money be a major problem, or will the needs of the survivors be covered? Will a parent be left with young children to rear alone? Is an adult child left with a complicated estate and many debts? If loose ends are tied up and realistic plans have been made, grief usually progresses more smoothly.

Age is also an important factor, as we will see later in this chapter. With life-long experiences with loss, the elderly usually progress to acceptance more quickly than children or young adults.

In the examples above, the focus is generally on the ill or dying patient; remember that the family and survivors are experiencing many of the same stages. Remember the caregivers as you administer to patients. The grief process is equally intense for those who are deeply affected by the loss. Family members are burdened with the care of the dying patient, or one whose health is compromised if this is not a terminal illness, and with changing family dynamics (Box 6-1). There may be a loss of security, great financial and physical burdens, added responsibility, and major life changes to accommodate the patient’s care, particularly if the situation involves a long, debilitating illness. Although some patients and families fight death to the last breath, in other cases, death may be a release and a relief for patients and caregivers.

Box 6-1 TEARS

With an emphasis on survivors of grief, both patients and family, professional grief workers use an acronym for bereavement that acknowledges the emotional release of tears, and the work that remains at the completion of Kübler-Ross’s stages. The acronym TEAR is defined as follows.