You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.

-Anne Lamott

Grief and bereavement are universal experiences that people go through when they are dealing with a loss in their lives. In end-of-life care, nurses must understand the fundamentals about grief, loss, and bereavement on the part of patients and families, and also within themselves. Individuals each express and cope with losses differently and a nurse should expect to see that when working with patients and families at the end of life. According to ELNEC (2010), the role of the nurse includes three things: (1) the nurse must facilitate the grieving process by assessing the grief; (2) the nurse must assist the patient with issues and concerns related to the grief; and (3) the nurse must support the survivors. The purpose of this chapter is to identify the main components related to grief, bereavement and mourning in the context of end-of-life care, to describe the various types of grief, and to explore the support needed to help individuals cope and live with the loss.

What is Grief?

Grief is a process that can begin long before the loss of a loved one. As mentioned in Chapter 7, the patient and family can have feelings of loss even as they anticipate an impending loss. Grief is the emotional response to that loss. Similar to the stages of dying, individuals go through a process to help them eventually cope and be able to live with that loss. This process has been referred to as “grief work” and as with the stages of dying, people can go through the stages in varying order. People never get over their loss, but find ways to live with the loss and without their deceased loved one (ELNEC, 2010).

A three-stage model of grief was developed by Corless (2010) and includes the following components: notification and shock, experiencing the loss, and reintegration. The first stage, notification and shock, is when the individual first learns or acknowledges the loss. They often feel shock and numbness and may isolate from others during this initial phase. In the second stage, the individual really experiences the loss both emotionally and cognitively. A host of feelings can occur during this stage including; anger, sadness, emptiness, as well as physical manifestations (insomnia, loss of appetite). The final stage is when the individual reorganizes and reintegrates into their life without the person they have lost. This last stage characterizes the healing that should ideally take place at the end of grief.

Types of Grief

There are several different types of grief reactions that people can have. Some of these are considered to be normal while others signify an alteration in coping with the loss.

Normal or uncomplicated grief

This type of grief symbolizes the most desirable and universal reaction to loss and is considered to be normal Corless (2010). The individual will have physical, emotional, cognitive, and behavioral reactions following the loss and will eventually move toward adjusting to it. The period of time for this can vary from person to person and is dependent on the type of relationship, type of loss and individual factors related to the bereaved. The nurse should support the family to take the time that they need for this normal grief processes to happen.

Anticipatory grief

Anticipatory grief is grief that occurs before the loss of a loved one. Sometimes anticipatory grief starts at the time of a terminal diagnosis and can proceed until the person dies. Both patients and family members can feel anticipatory loss. For the patient, they can anticipate the loss of independence, function or comfort. This can cause a lot of pain and anxiety if not given the proper support. For the family, they often start grieving for the loss of their loved one before they die. Perhaps it is because they bear witness to the pain or suffering they see their loved one go through or maybe they are also envisioning their own life without their loved one in it. They start to think about all the things that they still wanted to share with their loved one, who will likely not live long enough to do. This type of grief has been shown to help cushion a person’s bereavement reaction (Corless, 2010).

Complicated grief

Complicated grief may require professional assistance depending on its severity and can be further classified into four different types as shown in Table 12.1. Individuals could be at risk for complicated grief if they experience losses that are sudden or traumatic or resulting from suicide/homicide. If the person has already had recent losses or previous losses from which they did not resolve their grief, it can contribute to developing complicated grief reaction with the new loss. Lack of a support network or concurrent stressors such as ailing health or relationships, also can contribute to this type of grief (ELNEC, 2010).

(ELNEC, 2010)

Disenfranchised grief

This type of grief is defined as grief that has not been validated or recognized (ELNEC, 2010). This type of grief often develops in individuals who have lost loved ones to stigmatized illnesses, such as AIDS, or through socially unacceptable ways, such as abortion. The loss of a previously severed relationship, such as with divorce, can also contribute to this type of grief because the individual may not be able to mourn as openly for that loved one due to the circumstances surrounding their relationship.

Unresolved grief

In this type of grief, the bereaved has failed to move through the stages of grief and accomplish the work needed to come to terms with the loss (Corless, 2010). Many factors can contribute to the manifestation of this type of grieving and can include: lack of formal closure (loved one’s body never found or laid to rest), multiple or concurrent losses, or social isolation.

Manifestations of Grief

As mentioned before, grief can consist of physical, emotional, cognitive, and behavioral reactions to the loss. The bereaved person can feel the pain from their loss in any or all of these ways. Some of the physical manifestations of grief can include: feeling physically ill from the loss, headaches, heaviness or pressure, tremors, muscle aches, exhaustion and insomnia. Cognitive manifestations can include: inability to concentrate, sense of confusion or disbelief, preoccupation with the deceased, and hallucinatory experiences. Emotional responses include: anxiety, guilt, anger, sadness, feelings of helplessness, and relief. Lastly, behavioral manifestations can include: withdrawal, impaired performance at work or school, avoiding anything that reminds one of the deceased, or possessing constant reminders of the deceased (ELNEC, 2010).

Bereavement

Bereavement includes grief and mourning and has been considered to be the “time period in which the survivor adjusts to their life without their loved one” (ELNEC, 2010). This period can include the time right after the loss or death occurs, during the funeral proceedings, and during the grieving process afterward. Different individuals respond to this period in various ways. A person’s age, physical and emotional health, culture, and previous experience with loss can all affect the way that they grieve during this period of time. Bereavement differs from grief in that it includes the period of time from the beginning of the loss until acceptance has been reached. Mourning takes place during this time and can differ based on personal and cultural factors.

Letting go

The phrase “letting go” is a concept that has been explored in the context of death and dying. Family members who provide care to a terminally ill loved one often experience the phenomenon of “letting go.” This involves a process in which the end result is recognition of their loved one’s impending death, with some freedom from the immense emotional constraint usually experienced prior to this awareness. This can be done both before the death and after, and is part of grief and bereavement. Lowey (2008) conducted a concept analysis of ”letting go” and found that the concept is comprised of four distinct attributes. These include: (1) a shift in thinking, or a crucial turning point; (2) recognition of the fact that, despite efforts to save the loved one, they are dying (or have died) and all hope for recovery or prolonged life is exhausted; (3) acknowledging the impending physical and emotional loss that will occur with the death; and (4) allowing the progression to inevitable death to occur by choosing not to prolong or impede this natural progression. Some of these attributes are similar and might be compared with anticipatory grief, anticipatory mourning, and death awareness.

Support for the Bereaved

Both informal and formal support can be utilized to help bereaved individuals cope with the loss of their loved one. The kind of support a person requires will differ and it is important for the nurse to conduct a thorough grief assessment. ELNEC (2010) recommends that assessment of grief occur at regular intervals throughout the course of illness and should ideally begin at diagnosis. Grief should be assessed frequently in the bereavement period in order for the nurse to be able to develop an effective plan to assist the bereaved in coping with their loss. Bereavement follow-up with families is part of most hospice programs and can include formal activities and events to promote closure and acceptance. Many hospices have non-denominational memorial services to honor those patients who have been lost. Family members and staff are invited to participate, and these can be effective at helping both parties find closure. Other formal types of support can include support groups. Most organizations and/or health care systems have various support groups for individuals, some of which are specific to a particular type of illness (i.e., cancer). Individual or group counseling or psychotherapy are other methods that can assist the bereaved in coping with their loss.

Some informal support that can help the bereaved are visits by family and friends, attending informal support groups, or support from members of the bereaved’s church. Nurses who continue to be involved with the bereaved following the patient’s death should provide support to the survivor to help them “feel the loss, express the loss, and complete the tasks of the grieving process” (ELNEC, 2010, pp M7-7). Nurses are in the ideal position to assist patients with identifying and expressing their feelings related to the loss. One of the biggest facilitators of this process which nurses can engage in is active listening. By actively listening to the bereaved, it helps them express their feelings and feel as though they are being heard. Developing a strong nurse-patient-family relationship in the beginning of the health care encounter can help with the support needed during the bereavement period.

Support for the Nurse

While this chapter has mainly focused on the family who is grieving the loss of a loved one, it is also important to recognize the health of the nurse who cares for patients at the end of life. Much of what has been written in this text focuses on the importance of establishing an effective nurse-patient-family relationship which will foster effective communication. In Chapter 10, we discussed the various components that can enable the nurse to enter into this type of strong relationship. While these tips will help to make the patient and family feel connected to their nurse, it can also make the nurse feel connected with the patient. In end-of-life care, with each connection will come a subsequent loss as patients die. Over time, multiple losses that are not well-supported could take their toll on the nurse. Nurses witness much pain, suffering, and distress in patients and families alike. They also can experience distress related to ethical or moral issues that are encountered as a result of the various health care decisions that occur at the end of life. Hospice nurses in particular can be vulnerable to “cumulative loss.” Cumulative loss is when nurses experience multiple successions of losses, often on a daily basis, without adequate time for resolution before the next loss (ELNEC, 2010). Over time, this can lead to emotional distress in the nurse.

Factors that can affect the way nurses who care for dying patients adapt to the losses experienced in the workplace include: nurse’s educational level, personal death history, life changes, and support systems (ELNEC, 2010). Nurses who work with this population have to find a way to balance the losses they experience through healthy expressions of their feelings. In hospice care, nurses usually have formal team debriefing meetings following the death of patients, as well as memorial ceremonies they can attend to help them find closure. These are formal types of support that are available to nurses, depending on their setting. Informal support systems, such as talking with co-workers or peers, can also help provide a supportive environment for the nurse. The nurse may find solace from spiritual or religious services or support from their own clergy. Engaging in self-care activities, such as massage or vacations, can also help the nurse cope with the effects of their role. Finally, nurses who work in end-of-life care should continue to engage in continuing education activities which can help provide knowledge and skills about ways to effectively cope with the effects of their role (ELENC, 2010).

References

Corless, I. B. (2010). Bereavement. In B.R. Ferrell & N. Coyle (Eds.), Oxford Textbook of Palliative Nursing (pp. 597-611). New York: Oxford University Press.

End of Life Nursing Education Consortium (2010). ELNEC – core curriculum training program. City of Hope and American Association of Colleges of Nursing. Retrieved from http://­www­.aacn.­nche.­edu/­ELNEC

Lowey, S. E. (2008). Letting go before a death: A concept analysis. Journal of Advanced Nursing, 63(2), 208-215.