End-Of-Life Nursing Education Consortium

ELNEC

End-of-Life Nursing Education Consortium

International Curriculum

Faculty

Guide

Module 7

Loss, Grief, and Bereavement

The End-of-Life Nursing Education Consortium (ELNEC) Project is a national end-of-life educational program administered by City of Hope (COH) and the American Association of Colleges of Nursing (AACN) designed to enhance palliative care in nursing. The ELNEC Project was originally funded by a grant from The Robert Wood Johnson Foundation with additional support from funding organizations (Aetna Foundation, Archstone Foundation, California HealthCare Foundation, National Cancer Institute, Oncology Nursing Foundation, and Open Society Institute). Further information about the ELNEC Project can be found at

Module 7

Loss, Grief & Bereavement

Module Overview

This module addresses the challenging aspects of grief, loss and bereavement of patients and families as well as the loss experiences of health care professionals.

Key Messages

Even with the provision of excellent palliative care, the loss of one's own life, or that of a loved one, creates intense grief.
Palliative care can facilitate adaptation to loss and greatly relieve distress and suffering.
Healthcare providers also require support for their own grief in caring for the terminally ill.

Objectives

Upon completion of this module, the participant will be able to:

Define loss, mourning, grief and bereavement.
Distinguish between anticipatory grief, normal grief, complicated grief and disenfranchised grief.
Describe three tasks of grief and list five factors that may significantly affect the grief process.
Provide three interventions that may be appropriate to facilitate normal grief.
Verbalize an understanding of grief and loss issues as they relate to complex or traumatic circumstances.
Define personal death awareness and cumulative loss associated with professional care-giving.
Identify four systems of support the healthcare provider can access to assist in coping with death anxiety and loss.

Module 7: Loss, Grief & Bereavement

Participant Outline

INTRODUCTION

Patient, family and healthcare provider
Healthcare provider's role

THE GRIEF PROCESS

The process
Loss, grief, mourning, and bereavement

Loss
Grief
Mourning
Bereavement
Cultural considerations

Types of grief

Anticipatory grief
Normal grief
Complicated grief

Types
Risk factors
Complicated reactions
Factors

Disenfranchised grief
Children's grief

Based on age & developmental level
Symptoms of grief in younger children
Symptoms of grief in older children

Stages and tasks of grief
Notification/shock
Experience the loss
Reintegration

Factors affecting the grief process

GRIEF ASSESSMENT

Who it includes
When it occurs
Assessment of grief

Type of grief
Grief reactions
Factors that affect the grief process
Caregiver assessment

BEREAVEMENT INTERVENTIONS

Plan of care
Attitude
Cultural practices
What to say
Children and parents
Anticipatory grief

Emotional support
Encourage verbalization
Encourage life review
Educate the patient/family about dying process
Encourage patient/family to complete unfinished business
Provide presence, active listening, touch and reassurance

Grief interventions

Identify and express feelings
Disenfranchised grief - acknowledgment
Public funerals, memorial services, rites, rituals and traditions; private rituals
Spiritual care
Identify need for additional assistance and making referrals
Recognizing developmental stage of children
Refer to support group(s)

Completion of the grieving process

THE HEALTHCARE PROFESSIONAL: DEATH ANXIETY, CUMULATIVE LOSS, GRIEF

Cumulative loss
Stages of adaptation for the healthcare professional
Factors influencing the healthcare provider's adaptation process

Professional education
Personal death history
Life changes
Support systems

System of support for healthcare provider

Balance
Assessing support systems
Formal support
Informal support
Instructor support

CONCLUSION

Bereavement care continues after death
Assessment with ongoing intervention
Recognize own grief
Bereavement care is interdisciplinary

Module 7: Loss, Grief & Bereavement
Faculty Outline

Slide 1

“There are no mistakes, no coincidences.

All events are blessings given to us to learn from.”

Elisabeth Kübler-Ross

Slide 2

Grief, loss and bereavement are experienced by the patient, family and healthcare provider. Each survivor and professional caregiver experiences grief in his/her own way:

Using his/her own coping skills;

In accordance with his/her own cultural norms, belief systems, faith systems;

Past and present life experiences related to grief, loss and bereavement.

Grief affects survivors physically, psychologically, socially and spiritually.

Healthcare providers should utilize an interdisciplinary team (nurses, social workers, volunteers, grief and bereavement counselors, physician) to facilitate the survivor grief process. Each discipline can contribute his/her expertise to the bereavement plan of care.

Discussion:

How is grief expressed in your culture?
Slide 3

The healthcare provider has a unique role in assessing, assisting, and supporting the patient and his/her family with grief, loss, and bereavement. The healthcare provider’s role includes:

Facilitating the grief process by thoroughly assessing the grief.

Assisting the patient with grief issues they may be experiencing (may include loss of health, loss of a body part, loss of control, loss of a business, impending loss of life, etc).

Supporting the survivor to:

Feel the loss;

Express the loss;

Complete the tasks of the grief process.

Slide 4

Grief is a process. Grief begins before the death for the patient and survivor as they anticipate and experience loss. Grief continues for the survivor with the loss of their loved one.

The grief process is not always orderly and predictable.

Usually the grief process includes a series of stages and/or tasks that the survivor moves through to help resolve grief. This is sometimes referred to as "grief work" (Chan et al., 2004).

No one really "gets over" a loss, but he/she can heal and learn to live with a loss and/or live without the deceased.

Grief work begins as the survivor begins to live with and accept the loss.

Slide 5

Loss is defined as the absence of a possession or future possession, and with this comes the response of grief and the expression of mourning.

Losses may occur before the death for the patient and significant others as they anticipate and experience loss of health, changes in relationships and roles and loss of life (anticipatory grief). After a death, the survivor experiences loss of the loved one. Most losses will trigger mourning and grief and accompanying feelings, behaviors and reactions to the loss. Patients (loss of health, financial security, loss of body part, etc), family members and survivors all experience loss.

Grief is the emotional response to a loss. Grief is the individualized and personalized feelings and responses that an individual makes to real, perceived, or anticipated loss (Kissane, 2003). The feelings associated with grief cannot directly be felt by others, but the reactions to the grief and associated behaviors may be assessed by the healthcare provider. These feelings can include anger, frustration, loneliness, sadness, guilt, regret, peace, etc.

Mourning is the outward, social expression of a loss. How one outwardly expresses a loss may be dictated by cultural norms, customs, and practices including rituals and traditions. Some cultures may be very emotional and verbal in their expression of loss, some may show little reaction to loss, others may wail or cry loudly, and some may appear stoic and businesslike. How does mourning occur in your country?

Religious and cultural beliefs may also dictate how long one mourns and how the survivor "should" act during the bereavement period. In addition, outward expression of loss may be influenced by the individual's personality and life experiences (Corless, 2010).

Slide 6

Bereavement includes grief and mourning - the inner feelings and outward reactions of the survivor. It is often said that the survivor has a "bereavement period." This may be the time it takes for the survivor to feel the pain of loss, mourn, grieve and adjust to a world without the physical, psychological and social presence of the deceased.

The bereaved person should be encouraged to:

Talk about the death;

Understand that their feelings are normal;

Allow sufficient time for the expression of grief;

Solve immediate, practical problems, but postpone long-term decisions such as a place of residence or a change of job.

It is the healthcare provider's responsibility to be aware of the cultural characteristics of grief and mourning for patients, family members, and survivors they care for. In addition, the healthcare provider should identify the type of grief based on characteristics, signs/symptoms of grief to be able to implement appropriate bereavement interventions (D’Avanzo, 2008).

Slide 7

It is important for healthcare providers to understand how patients and their families comprehend loss. In order to better understand loss, grief, bereavement, have participants review one or both of the following exercises:

Figure 1: Personal Loss History (take 5 minutes for participants to complete the history and allow an additional 5 minutes for them to share with the group).

Figure 2: Loss Exercise. Read the exercise to the class and ask them to cross out items. After the exercise is completed, have 1 or 2 participants share their thoughts.

After completing one or both of the above-mentioned exercises, move on into the various types of grief (next slide).

Slide 8

Anticipatory grief is defined as grief before loss associated with diagnosis, acute and chronic illness and terminal illness experienced by patient, family and caregivers (Corless, 2010).

Examples of anticipatory grief include:

Actual or fear of potential loss of health;

Loss of independence;

Loss of body part;

Loss of financial stability, loss of choice, loss of mental function.

Children's responses to serious illness in the family are a form of anticipatory grief, and may include (Glass et al., 2010):

Concrete, magical thinking that results in guilt such as "I once told mommy I wished she was dead.";

Fears of abandonment, fears of contracting the disease, anger, withdrawal, acting out behavior, inability to concentrate and focus especially on schoolwork;

Inability to concentrate and focus, especially on schoolwork;

Developmental regression (i.e. bed-wetting).

Module 7 Suggested Supplemental Teaching Materials:

Table 1: Types of Grief

Slide 9

Normal grief is described as normal feelings, behaviors and reactions to a loss. Normal grief reactions to a loss can be:

Physical,

Emotional,

Cognitive,

Behavioral.

Active grieving can take years. We don’t get over the loss, but the relationship with the deceased changes. There is a reconnection with the world of the living.

Module 7 Suggested Supplemental Teaching Materials:

Table 2: Normal Grief Reactions

Slide 10

There are four types of complicated grief:

Chronic grief is characterized by normal grief reactions that do not subside and continue over very long periods of time.

Delayed grief is characterized by normal grief reactions that are suppressed or postponed and the survivor consciously or unconsciously avoids the pain of the loss (e.g. refuses to talk to anyone about the grief, not interested in bereavement groups, etc).

Exaggerated grief is where the survivor resorts to self-destructive behaviors (e.g. suicide).

Masked grief is where the survivor is not aware that behaviors that interfere with normal functioning are a result of the loss.

Slide 11

Risk factors for complicated grief include sudden or traumatic death, suicide, homicide, dependent relationship with deceased, chronic illness, death of a child (Davies et al., 2010), multiple losses, unresolved grief from prior losses, concurrent stressors, difficult dying process such as pain and suffering, lack of support systems, lack of faith system.

Complicated grief reactions may include

Severe isolation,

Violent behavior,

Suicidal ideation,

Severe or prolonged depression,

Replacing loss and relationship quickly,

Searching and calling out for the deceased,

Avoidance of reminders of the deceased,

Imitating the deceased.

Factors that contribute to complicated grief in the older adult include:

Lack of a support network,

Concurrent losses,

Poor coping skills.

Module 7 Suggested Supplemental Teaching Materials:

Table 6: Inventory of Complicated Grief

Slide 12

Disenfranchised grief is defined as any loss that is not validated or recognized. Society may not want to acknowledge the grief and does not know how to deal with the loss. The grief encountered when a loss is experienced and people do not feel the freedom to openly acknowledge their grief.

Those at risk include:

Partners of HIV/AIDS patients,

Ex-spouses,

Ex-partners,

Fiancées,

Friends, lovers, mistresses, co-workers,

Children experiencing the death of a stepparent,

The mother of a stillborn child,

Women (and husbands/boyfriends, lovers) who have experienced a terminated pregnancy.

Slide 13

Children's grief is based on developmental stages and can be normal and/or complicated.

Symptoms of grief in younger children are numerous: Nervousness; uncontrollable rages; frequent sickness; accident proneness; rebellious behavior; hyperactivity; nightmares; depression; compulsive behavior; memories fading in and out; excessive anger; excessive dependency on remaining parent; recurring dreams of wish-filling; denial and/or disguised anger.

Symptoms of grief in older children include: Difficulty concentrating; forgetfulness; poor school work; insomnia or sleeping too much; reclusiveness or social withdrawal; antisocial behavior; resentment of authority; overdependence; regression; resistance to discipline; talk of or attempted suicide; nightmares; symbolic dreams; frequent sickness; accident proneness; overeating or under eating; truancy; experimentation with alcohol/drugs; depression; secretiveness; sexual promiscuity; staying away or running away from home; compulsive behavior.

Module 7 Suggested Supplemental Teaching Materials:

Table 7: Helping Children Cope with Grief: Remember the CHILD

Table 8: Interventions for Grieving Children

Slide 14

There are many theorists who have developed stages of grief and a series of tasks for the survivor to successfully complete their grief work and adapt to life without the deceased.
Stages and tasks of grief include:

Stage 1: Notification and shock

Task - share acknowledgment of the reality of the loss, recognize the loss.

Characteristics - assist survivor in coping with initial impact of death, survivor may have feelings of numbness, shock, poor daily functioning, isolation, avoidance.

Stage 2: Experience the loss emotionally and cognitively

Task - share in the process of working through the pain of the loss.

Characteristics - Survivor may feel anger at person who died, abandoned by them. Anger may be directed at members of the healthcare team, family, friends. Survivor may feel guilt based on perceptions of "not doing enough." Survivor may experience sadness, loneliness, emptiness, lack of interest in daily life, insomnia, changes in appetite, apathy, disorganization.

Stage 3: Reintegration

Task - Reorganize and restructure family systems and relationships and reinvest in other relationships.

Characteristics - Survivor finds hope in the future, feels more energetic, participates in social events, acceptance of death.

Module 7 Suggested Supplemental Teaching Materials:

Table 3: Stages and Tasks of Grief

Slide 15

There are many factors that affect the grief process:

Survivor personality,

Coping skills,

History of substance abuse,

Relationship to the deceased,

Survivor age

Deceased age

Survivor religious/spiritual belief system, (Puchalski et al., 2009; Walsh, et al., 2002)

Type of death:

Sudden,

From long, chronic illness,

Suicide,

Survivor ethnicity, cultural traditions, rites and rituals

There are variations among rituals and mourning practices in different cultures which provides a context for the grief experience. It gives members a sense of security and of coherence, and the emotional, social and physical resources in which to frame it (Mazanec & Panke, 2010). Refer to the Culture module (Module 5) for further information.

Others:

Suicidal tendencies,

History of mental illness (i.e. depression),

Survivor gender,

Support systems,

Concurrent stressors,

Experience and history of losses,

Death preparation,

Module 7 Suggested Teaching Materials:

Table 9: Spiritual Assessment: Mnemonics for Interviewing

Slide 16

Grief assessment includes the patient, family members, significant others. Grief assessment begins at the time the patient is admitted to a hospital, nursing facility, assisted living facility, and at the time of diagnosis of acute or chronic illness, terminal illness. Grief assessment is ongoing throughout the course of an illness for the patient, family members and significant others and for the bereavement period after the death for the survivors. Grief should be assessed frequently during the bereavement period to alert the healthcare provider to possible signs/symptoms/reactions of complicated grief.

Slide 17

Assessment is vital (Glass et al., 2010). Components of the grief assessment include:

Type of grief - anticipatory, normal, complicated (including risk factors for complicated grief), disenfranchised.

Grief reactions - normal or complicated.

Factors that may affect the grief process.

Many caregiver survivors do not care for themselves while caring for their loved one. As such, an assessment should also include (Corless, 2010):

General health check-up and assessment of symptoms,

Nutritional evaluation,

Sleep assessment,

Examination of ability to maintain work and family roles,

Assessment of social networks,

Determination of whether there are major changes in presentation of self,

Assessment of changes resulting from the death and the difficulties with these changes.

Slide 18