elnec - paliativnimedicina.cz€¦ · web viewm7-45 table 3 stages and tasks of grief. m7-46...

ELNEC END-OF-LIFE NURSING EDUCATION CONSORTIUM

International Curriculum

FACULTY GUIDE

Module 7

Loss, Grief, and Bereavement

Copyright City of Hope and American Association of Colleges of Nursing, 2008; Revised 2011.

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 www.aacn.nche.edu/ELNEC.

Module 7Loss, 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:1. Define loss, mourning, grief and bereavement.2. Distinguish between anticipatory grief, normal grief, complicated grief and disenfranchised

grief.3. Describe three tasks of grief and list five factors that may significantly affect the grief

process.4. Provide three interventions that may be appropriate to facilitate normal grief.5. Verbalize an understanding of grief and loss issues as they relate to complex or traumatic

circumstances.6. Define personal death awareness and cumulative loss associated with professional care-

giving.7. Identify four systems of support the healthcare provider can access to assist in coping with

death anxiety and loss.

Module 7: Loss, Grief & BereavementParticipant Outline

I. INTRODUCTIONA. Patient, family and healthcare providerB. Healthcare provider's role

II. THE GRIEF PROCESSA. The processB. Loss, grief, mourning, and bereavement

1. Loss2. Grief3. Mourning4. Bereavement5. Cultural considerations

C. Types of grief1. Anticipatory grief2. Normal grief3. Complicated grief

a. Typesb. Risk factorsc. Complicated reactionsd. Factors

4. Disenfranchised grief5. Children's grief

a. Based on age & developmental levelb. Symptoms of grief in younger childrenc. Symptoms of grief in older children

D. Stages and tasks of grief1. Notification/shock2. Experience the loss3. Reintegration

E. Factors affecting the grief process

III. GRIEF ASSESSMENTA. Who it includesB. When it occursC. Assessment of grief

1. Type of grief2. Grief reactions3. Factors that affect the grief process4. Caregiver assessment

IV. BEREAVEMENT INTERVENTIONSA. Plan of careB. AttitudeC. Cultural practicesD. What to sayE. Children and parentsF. Anticipatory grief

1. Emotional support2. Encourage verbalization3. Encourage life review4. Educate the patient/family about dying process5. Encourage patient/family to complete unfinished business6. Provide presence, active listening, touch and reassurance

G. Grief interventions1. Identify and express feelings2. Disenfranchised grief - acknowledgment3. Public funerals, memorial services, rites, rituals and traditions; private rituals4. Spiritual care5. Identify need for additional assistance and making referrals6. Recognizing developmental stage of children7. Refer to support group(s)

H. Completion of the grieving process

V. THE HEALTHCARE PROFESSIONAL: DEATH ANXIETY, CUMULATIVE LOSS, GRIEFA. Cumulative lossB. Stages of adaptation for the healthcare professionalC. Factors influencing the healthcare provider's adaptation process

1. Professional education2. Personal death history3. Life changes4. Support systems

D. System of support for healthcare provider1. Balance2. Assessing support systems

a. Formal support b. Informal supportc. Instructor support

VI. CONCLUSIONA. Bereavement care continues after deathB. Assessment with ongoing interventionC. Recognize own griefD. Bereavement care is interdisciplinary

Module 7: Loss, Grief & BereavementFaculty Outline

Slide 1

“There are no mistakes, no coincidences. All events are blessings given to us to learn from.”

Elisabeth Kübler-Ross

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?

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.

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.

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).

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).

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).

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

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

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.

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

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.

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 CHILDTable 8: Interventions for Grieving Children

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

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

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.

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.

Bereavement interventions are multi-faceted. Plan of care – What resources are available in your country to help bereaved people? Attitude - The healthcare provider should maintain an accepting, non-judgmental attitude when providing

bereavement support and care. Cultural practices - Each survivor's cultural practices in mourning and grief reactions should be respected

and honored. What to say – Healthcare providers may fear "saying the wrong thing" to a survivor, or they may fear not

knowing what to say to a survivor. Anticipatory grief - Often a patient and/or family member experiencing anticipatory grief requires the same

grief interventions as a survivor of a deceased patient.

Module 7 Suggested Supplemental Teaching Materials:Table 4: Unhelpful & Helpful Comments in Speaking with the Bereaved

Attention to bereavement interventions are vital, no matter what age the survivor is. For children who have experienced the loss of a parent, a sibling, a grandparent, or friend, it

is important that their grief be assessed, dependent on their developmental stage. Children may be limited in their ability to verbalize and describe their feelings or grief. This can lead to emotional confusion as they filter through their own personal thoughts, as well as seeing their parents mourn. (Davies et al., 2010)

For parents, the death of a child has often been described as one of life’s most devastating experiences. The death affects not only the parents, but the siblings, grandparents, other relatives, friends, and the community as a whole. For the survivors, emotional, spiritual, and practical needs for support continue beyond the child’s death (Field & Behrman, 2003).

Grief interventions for children and adults include: Listening to “their stories.” Follow-up by healthcare providers who cared for the deceased are generally appreciated

by families. Encouraging children and adults that their grief is “normal” gives them comfort. Everyone grieves uniquely, so telling someone “how to grieve” is inappropriate. Play is the universal language of children—use it as often as possible.

Module 7 Suggested Supplemental Teaching Materials:Table 10: Supporting Grieving Families

The healthcare provider plays a key role in anticipatory grief interventions for the patient and family.

Preventive approaches to minimize sense of loss include: Giving emotional support. Encouraging life review. Encouraging verbalization of the anticipated loss. Educating the patient and family on signs and symptoms of disease progression and the dying process. Encouraging the patient and family members to complete unfinished business. Providing presence, active listening, touch and reassurance.

Healthcare professionals can provide: Opportunities to identify and express feelings.

Integrate touch, holding, and presence as appropriate. Recognize when silent presence is important. Teach relaxation techniques (i.e., breathing) to reduce tension. Use guided imagery or music to offer an alternate form of expression and relaxation (Hillard, 2001). Encourage healthy coping mechanisms such as exercise, proper nutrition and rest (Brown-Saltzman,

2006). Acknowledgement and validation of disenfranchised grief - the survivor's relationship with the deceased,

feelings, grief reactions and support his/her need for ritual, memorial service/funeral, traditions. Public funerals, memorial services, rites, rituals and traditions; private rituals. Private reflection about the meaning of the loss. Spiritual care (refer to priest, rabbi, pastor, etc). Bereavement interventions for children and parents (Davies et al., 2010):

Children react to grief based on developmental stages. Interventions with children should match the developmental stage.

Encourage children to attend bereavement support groups when they are available. Provide listing of bereavement resources in the community.

Identification of needs for additional assistance and making referrals. Assessment is ongoing throughout the bereavement period and bereavement care must be

interdisciplinary.

No one can predict when the grief work will be complete.

Grief work is never completely finished as there will always be times when a memory, object, anniversary of the death or feelings of loss occur.

Grief can diminish and healing can occur as characterized by: The pain of the loss is less. The survivor has adapted to life without the deceased. The survivor has physically, psychologically and socially "let go."

NOTE: The survivor, however, will continue to experience memories of the deceased.

Cumulative loss is a succession of losses experienced by healthcare providers who work with patients with life-threatening illnesses and their families, often on a daily basis (Vachon & Huggard, 2010).

Many times, healthcare providers do not have time to resolve losses before another loss occurs. This does not provide healthcare providers and other members of the interdisciplinary team an opportunity to remember the patient who just died and their family.

Healthcare providers can experience anticipatory and normal grief before and after the death of a patient.

Not only is loss painful, but when the healthcare provider is exposed to death frequently, he/she may not have time to resolve the grief issues of one patient before another patient dies.

Cumulative loss exercises may provide exploration and expression of the feelings associated with loss and grief.

Healthcare providers new to working with dying patients may need to adapt emotionally and spiritually to caring for the terminally ill (Vachon & Huggard, 2010).

There are six stages of adaptation in caring for dying patients and their families, including (Harper, 1994): Intellectualization, Emotional survival, Depression, Emotional arrival, Deep compassion, The “doer.”

Working through these stages is crucial to assist the healthcare provider in relieving anxiety about dying and death, attaining personal and professional growth and adapting to comfortably caring for patients at the end of life and their families.

Module 7 Suggested Supplemental Teaching Materials:Table 5: Coping with Professional Anxiety in Terminal Illness

There are numerous factors that influence the healthcare provider’s adaptation process (Vachon & Huggard, 2010).

Professional education In the past, health care professionals were often told to control emotions and to emotionally distance

themselves from patients and families. Patients at the end of life require intense interpersonal involvement and compassionate care.

Verbalizing feelings and expressing emotions helps the healthcare provider process grief and loss.

Personal death history Past experiences with death on a personal and/or professional level and possible unresolved grief issues can

influence the professionals' ability to cope with caring for dying residents and their families. Practice environments will impact reactions to death.

Life changes Life changes may include a death in the family, caring for elderly parents, separation from loved ones,

children leaving home, divorce and illness. These changes may signify losses, trigger grief responses and make it difficult for the healthcare provider

to cope with caring for dying patients and their families.

Support systems The presence or absence of support systems can influence the ability to move through the stages of

adaptation. Emotional support provided by peers, family, coworkers and faculty greatly increases the capacity to adapt

to and cope with the care of the dying.

There are various systems of support (Vachon & Huggard, 2010).

Balance Balance is the ability to provide compassionate, quality care to dying patients and their families and find

personal satisfaction in work as professional healthcare providers.

Assessing support systems The purpose of a system of support is to balance the effects of death anxiety and cumulative loss by

assisting the healthcare provider in exploring and expressing feelings associated with anxiety, loss and grief and adapting to caring for the dying patient and family.

Does the clinical setting support or inhibit the healthcare provider's professional adaptation, growth and development in caring for dying patients and families?

Does the clinical setting provide a supportive environment where the healthcare provider feels safe to express death anxiety, emotions, loss and grief? For example: Formal support systems (staff meetings where one can express feelings in a safe environment,

debriefings after a death, memorial ceremonies to acknowledge and express grief for all patients who have died).

Informal support (one-to-one sharing of experiences with co-workers, peers, instructor, pastoral care, physician).

Spiritual support Obtaining continued education in end-of-life care. Maintaining self care strategies (e.g., taking a vacation, being with special friends, etc).

Care and responsibilities to the dying patient and their family do not end with the death of the patient.

Loss, grief and bereavement should be assessed upon admission and bereavement care should continue after the death of the patient.

Healthcare professionals must recognize and respond to their own grief in order to provide quality palliative care.

Bereavement care is interdisciplinary care and our psychosocial colleagues have much to offer.

MODULE 7: LOSS, GRIEF & BEREAVEMENTKey References

Brown-Saltzman, K. (2006). Transforming the grief process. In R. Carroll-Johnson, L. Gorman, N. J. Bush (Eds). Psychosocial nursing care: Along the cancer continuum (2nd edition). Pittsburgh, PA: Oncology Nursing Press, Inc.

Chan, E. K., O’Neill, I., McKenzie, M., Love, A., & Kissane, D. W. (2004). What works for therapists conducting family meetings: Treatment integrity in family-focused grief therapy during palliative care and bereavement. Journal of Pain & Symptom Management, 27(6), 502-512.

Corless, I. B. (2010). Bereavement. In B. R. Ferrell, & N. Coyle (Eds.), Oxford textbook of palliative nursing, 3rd edition (Chapter 30, pp. 597-611). New York, NY: Oxford University Press.

D’Avanzo, C. E. (2010). Pocket guide to cultural assessment (4th ed.). St. Louis, MO: Mosby.

Davies, B., Limbo, R., & Jin, J. (2010). Grief and bereavement in pediatric palliative care. In B. R. Ferrell, & N. Coyle (Eds.), Oxford textbook of palliative nursing,3rd edition (Chapter 58, pp. 1081-1097). New York, NY: Oxford University Press.

Field, M.J., & Behrman, R.E. (Eds). (2003). When children die: Improving palliative and end-of-life care for children and their families. Washington, D.C.: National Academy Press.

Glass, E., Cluxton, D., & Rancour, P. (2010). Principles of patient and family assessment. In B. R. Ferrell, & N. Coyle (Eds.), Oxford textbook of palliative nursing,3rd edition (Chapter 4, pp. 87-105). New York, NY: Oxford University Press.

Harper, B. (1994). Death: The coping mechanism of the health professional. Greenville, SC: Southeastern University Press.

Hillard, R.E. (2001). The use of music therapy in meeting the multidimensional needs of hospice patients and families. Journal of Palliative Care, 17(3), 161-166.

Kissane, D.W., McKenzie, M., McKenzie, D. P., Forbes, A., O’Neill, I., & Bloch, S. (2003). Psychosocial morbidity associated with patterns of family functioning in palliative care: Baseline data from the Family Focused Grief Therapy controlled trial. Palliative Medicine, 17(6), 527-537.

Mazanec, P. & Panke, J.T. (2010). Cultural considerations in palliative care. In B.R. Ferrell & N. Coyle (Eds.), Oxford textbook of palliative nursing, 3rd edition (Chapter 37, pp. 701-711). New York, NY: Oxford University Press.

Pulchalski, C., Ferrell, B., Virani, R., Otis-Green, S., Baird, P., Bull, J., et al. (2009). Improving the quality of spiritual care as a dimension of palliative care: The report of the consensus conference. Journal of Palliative Medicine, 12(10), 885-904.

Vachon, M.L.S., & Huggard, J. (2010). The experience of the nurse in end of life care in the 21st century: mentoring the next generation. In B.R. Ferrell, & N. Coyle (Eds.), Oxford textbook of palliative nursing,3rd edition (Chapter 61, pp. 1131-1155). New York, NY: Oxford University Press.

Walsh, K., King, M., Jones, L., Tookman, A., & Blizard, R. (2002). Spiritual beliefs may affect outcome of bereavement: Prospective study. British Medical Journal, 324(7353), 1551.

Cross Reference with ELNEC Course Texts for Module 7:

Ferrell, B. R., & Coyle, N. (Eds.). (2010). Oxford textbook of palliative nursing (3rd ed.). New York, NY: Oxford University Press.Chapter Author Title 20 Pasacreta, Minarik, Anxiety and Depression

& Nield-Anderson 29 Ersek & Cotter The Meaning of Hope in the Dying

30 Corless Bereavement 31 Davies & Steele Supporting Families in Palliative Care 32 Berry & Griffie Planning for the Actual Death 33 Taylor Spiritual Assessment 34 Baird Spiritual Care Interventions

58 Davies, Limbo & Jin Grief & Bereavement in Pediatric Palliative Care

61 Vachon & Huggard The Experience of the Nurse in End-of-Life Care in the 21st Century: Mentoring the

The Next Generation

Module 7: Loss, Grief & BereavementCase Studies Guide

Module 7Case Study #1

"Mrs. S: Death of a Son

Mrs. S. is a 48-year-old woman. She is a mother of five and a grandmother of six. She is of the Muslim faith and attends religious services sporadically at a mosque. Her religious beliefs are strongly internalized.

Her husband died of a genetic heart disorder at the time of the birth of her son, Micha, some 22 years ago. She supported herself and her children by carrying on the family business of food brokerage. She has four sons and one daughter.

Her son, Micha, worked in a village market. He began complaining of fatigue and wanted to quit this job but felt that he had to have another job first. He was engaged to be married to a young Christian woman who also urged him to continue with this job until he found another one. He never told his fiancée of his tiredness because he was worried about finances.

Mrs. S. was very close to Micha, who as an infant and child slept with her. He had always been her favorite child. She felt that he was "her husband, her father, and her brother" who had all died. She said he replaced the grief she felt for all the men she had lost. He was always very attentive to her needs. He would listen to her concerns, take her out, and buy her things. He never said no to any of her requests. Recently, she felt that she had not paid enough attention to him. She had been focusing her attention on her grandchildren and other children.

Although she had told Micha to quit his job and to go to the doctor, she had not insisted. At the time, she felt that he was an adult and she respected his independence and choice not to see a physician. Micha rushed out from his bedroom screaming in pain early one morning, collapsed and died of a heart attack from a genetic heart condition. This was a traumatic shock to all of the family, but one that Mrs. S. now feels extremely guilty about.

Eight months after Micha's death, Mrs. S. states she cannot forgive herself and wishes God would take her so she can be with her son and husband. She states she would not commit suicide as it is against her religion, and if she did commit suicide, she would not be able to see her son again. She longs to see him even if only in her dreams.

Mrs. S. is only sleeping soundly for about two hours a night. She wanders the house at night hoping to feel and see Micha just one last time. Her appetite has decreased considerably. She has lost interest in her personal care and only dresses in the late afternoon.

She chooses not to leave the home and no longer goes out to the backyard to watch the grandchildren play. She no longer goes to the mosque but prefers to stay in her room. She refuses to allow anyone to go in or touch Micha's things in his room. She has asked the youngest

boy grandchild to sleep with her at night so she does not become "frightened" or "lonely" during the night.

She has developed pain in her left side, headaches and stomach pains but refuses medical intervention. She states that doctors are too expensive here and she does not want to burden her son who now works two jobs to support the family. A concerned family friend suggests he contact the local hospice as maybe they can help his grieving mother.

Adapted from: Lo, K. (2000). “Mrs. S.” Largo, FL: The Hospice Institute of the Florida Suncoast. Reprinted with permission.

Discussion Questions:

1. What additional information should be assessed by hospice about this family?

2. What are the risk factors for complicated grief in this case?

3. What bereavement services might be provided? What disciplines should be involved?

4. What kind of grief might the fiancée be experiencing? What interventions would be appropriate?


John and Rose: A Loss of a True Love

Rose resided in a long-term care nursing facility for almost two years. She and her husband John had been married for 52 years and had a very close relationship. They had no children. John would visit Rose twice a day, at lunch and again at dinnertime to assist her with her meals and share private time together. He could no longer drive and took a cab to the nursing facility. He knew many of the residents and would frequently be seen telling them a joke or pushing them in their wheelchairs. Rose was confused at times and always seemed very peaceful and relaxed when John came to visit.

Over the course of a few months, Rose's condition began to deteriorate. She declined food and fluids and died peacefully with John present. John had a memorial service for Rose, but few friends came. John had stopped visiting his friends when Rose was admitted to the nursing facility and he became so busy with his twice-daily visits. John cried continuously for three days after the memorial service. When he talked about Rose, he spoke of her as if she were still alive. On most days, he could not decide what to eat or what he was supposed to be doing.

Two months after the death of Rose, John was only crying sporadically. His appetite was not good and he had lost some weight. He spent a good deal of his time at home looking at pictures of himself and Rose when they were younger. Once a week, he would visit the nursing facility where Rose died and converse with the other residents and nursing facility staff. Five days a week he would go to the cemetery to visit Rose's grave. The neighbors were concerned about John. When they offered to take him out to eat, he became angry, tearful and declined their invitation.

Six months after the memorial service, John began going to the store and church, but he had very little interest in these activities. He had always enjoyed walking around the nursing facility grounds, but he no longer enjoyed walking. He would visit the cemetery once a week. He would forget where he put things in the house. He allowed neighbors to visit and spent most of the time reminiscing about his life with Rose, her illness and her death. He had difficulty sleeping and would spend many nights wandering around the house.

Ten months after Rose died, John began feeling more energetic. He would still cry when something profound reminded him of Rose, but he did not cry very often. He began eating regular meals and going out to dinner with the neighbors twice a week. He also started playing shuffleboard with his homeowners club and contacted a few friends he hadn't seen in years. One year after Rose died, John visited the nursing facility to plant a tree in Rose's name in the nursing facility courtyard. He also visited her grave that day. That afternoon, he played shuffleboard and went to dinner with a friend he hadn't seen in two years.

Source: Lo, K. (2000). “John and Rose.” Largo, FL: The Hospice Institute of the Florida Suncoast. Reprinted with

permission.


1. Describe John's grief reactions.

2. Describe John's grief process in relation to his progression through the stages and tasks of grief.

3. Was John experiencing normal or complicated grief? Why?

4. What interventions might have facilitated John's grief?


Heather: A Sudden Death

Heather was 24-years old. She was just beginning her second year as a teacher and was to be married in two months. Heather was going to school when she was hit by a truck. She sustained multiple fractures, head injury, and extensive internal injuries. Her parents and older brother were informed on arrival at the hospital that her chances for survival were extremely low. She was taken to the operating room but she died there. A staff member was called to be with the family when they arrived at the hospital. The staff member stayed with them after they received the news of Heather’s death.


1. How is grief from this sudden death likely to differ from death resulting from chronic illness?

2. What communication strategies would be helpful for the hospital staff member to use with Heather’s parents on their arrival to the ER? While she is in surgery? At the time of her death?

3. What kind of grief would the fiancée likely experience? What types of interventions would be helpful? How might his grief differ from Heather’s parents and siblings?

4. How best would the grief of Heather’s students be assessed and managed?


Self-Inventory: It’s Your Turn

As healthcare providers, we many times experience cumulative loss. We have had the privilege to spend the last days, hours, and minutes with our patients before they die. Once they die, we fill-out the necessary paperwork, make essential phone calls, say good-bye to families and move on to the next patient. Whether we work in hospice, oncology, medical/surgical, or education, our time is usually short to complete “tasks” and then we must move on to the next event. For many, there is never closure to these cumulative losses. Great care must be given to provide care for healthcare providers who do this work daily.

Below is a set of questions that will assist you in thinking about some of the losses you have experienced in your professional career.


1. How long have you been a healthcare provider?

2. How many patients have you seen die in the last year?

3. How many patients did you care for but were not there when they died?

4. Describe your most memorable patient who died? Was it a “good” death? If so, what made it a good death? Was it a “bad” death? If so, what made it a bad death? What steps were put in place to make this a “good” or “bad” death? What improvements could have been made? What institutional systems supported the “good” death? What systems supported the

“bad” death?

5. Does your institution offer bereavement support for staff? If not, who would you need to contact to get this service offered to you and other staff

members at your institution? How would you envision this bereavement support?

6. What do you do to take care of yourself? How do you spend your time away from your work? Do you have hobbies, friends, family? When did you last take a vacation? Do you have a mentor? If not, consider choosing someone who is a little further “down

the road” who can offer you insight into what you encounter daily.

Module 7: Loss, Grief, BereavementSupplemental Teaching Materials/Training Session Activities Contents

Table 1 Types of Grief M7-41

Table 2 Normal Grief Reactions M7-45

Table 3 Stages and Tasks of Grief M7-46

Table 4 Unhelpful & Helpful Comments in Speaking with the Bereaved

M7-47

Table 5 Coping with Professional Anxiety in Terminal Illness

M7-48

Table 6 Inventory of Complicated Grief M7-49

Table 7 Helping Children Cope with Grief: Remember the CHILD

M7-51

Table 8 Interventions for Grieving Children M7-52

Table 9 Supporting Grieving Families M7-53

Figure 1 Personal Loss History M7-54

Figure 2 Loss Exercise M7-55

Figure 3 Opportunity for Reminiscing M7-58

Module 7: Loss, Grief, BereavementSupplemental Teaching Materials/Training Session Activities

Module 7Table 1: Types of Grief

Type of Grief Definition CharacteristicsAnticipatory Grief(Rando, 2000)

Anticipated and real losses associated with diagnosis, acute and chronic illnesses and terminal illness.

Experiencing anticipatory grief may provide time for preparation of loss, acceptance of loss, finish unfinished business, life review, resolve conflicts. For survivor, anticipatory grief provides time for preparing for life without deceased including preparation for role change, mastering life skills such as paying bills and learning how to manage a checkbook.

With acute illness, chronic illness, accidents and other changes in health, a patient may experience loss of general health, loss of functionality, loss of independence, loss of role in the family (breadwinner, caretaker) and loss of lifestyle as a result of dietary or activity restrictions. Loss of a limb or body part (breast, uterus) may cause loss of self-confidence, changes in perception about body image.

Family members, significant others will also experience losses when patient is ill, including loss of role in the family, loss of relationship, loss of finances, loss of security, loss of companionship, loss of relationship, etc.

AIDS can cause multiple losses over short periods of time, such as loss of a job, material possessions, body image due to changes in physical appearance, functionality, privacy (the secret is out), friends, partners, and social acceptance.

With diagnosis of terminal illness, additional losses may include loss of control (choice), loss of physical and/or mental function, loss of relationships, loss of body image, loss of future, loss of dignity, loss of life.

Normal Grief Also known as uncomplicated grief.

Normal feelings, reactions and behaviors to a loss; grief reactions can be physical, psychological, cognitive, behavioral.

(Doka, 1989; Parkes & Prigerson, 2009; Worden 2009).

Reactions to loss can be physical, psychological and cognitive.

Complicated grief includes:

Chronic Grief

Delayed Grief

Normal grief reactions that do not subside and continue over very long periods of time.

Normal grief reactions that are

Those at risk for any of the four types of complicated grief may have experienced loss associated with:

traumatic death sudden, unexpected death such as heart

attacks, accidents suicide

Type of Grief Definition Characteristics

Exaggerated Grief

Masked Grief (Brown-Saltzman, 2006; Corless, 2010; Loney, 1998; Parkes & Prigerson, 2009; Worden, 2009)

suppressed or postponed. The survivor consciously or unconsciously avoids the pain of the loss.

Survivor resorts to self-destructive behaviors such as suicide.

The survivor is not aware that behaviors that interfere with normal functioning are a result of the loss.

homicide dependent relationship with deceased mature person or those with chronic

illnesses (survivor may have difficulty believing death actually occurred after years of remissions and exacerbations)

death of a child multiple losses unresolved grief from prior losses concurrent stressor (the loss plus other

stresses in life such as divorce, a move, children leaving home, other ill family members, financial issues, etc.).

history of mental illness or substance abuse

patient's dying process was difficult including poor pain and symptom management, psychosocial and/or spiritual suffering

poor or few support systems no faith system, cultural traditions,

religious beliefs

Complicated grief reactions can include any of the normal grief reactions, but the reactions may be intensified, prolonged, last more than a year and/or interfere with the person's psychological, social, and physiological functioning. Other complicated grief reactions may include:

severe isolation violent behavior suicidal ideation workaholic behavior severe deterioration of functional status symptoms of post traumatic stress

disorder denial beyond normal expectation severe or prolonged depression loss of interest in health and/or personal

care severe impairment in communication,

thought or motor skills ongoing inability to eat or sleep replacing loss and relationship quickly social withdrawal searching and calling out for deceased avoidance of reminders of the deceased imitating the deceased

Survivors experiencing complicated grief should be referred to a grief and bereavement specialist/counselor.

Disenfranchised Grief The grief encountered when a loss is Those at risk for experiencing disenfranchised

Type of Grief Definition Characteristics

(Doka, 2002)experienced and cannot be openly acknowledged, socially sanctioned or publicly shared.

Usually survivor experiencing disenfranchised grief may not be recognized by biological family members and excluded from rites, rituals and traditions for loss.

grief include partners of HIV/AIDS patients, ex-spouses, ex-partners, fiancés, friends, lovers, mistresses, co-workers, children who experience the death of a step-parent and others persons close to the patient but not biological family members.

The mother of a stillborn delivery may also experience disenfranchised grief, as society may not acknowledge a relationship between the mother and a child who experienced death prior to birth.

Children's Grief Children mourn, grieve based on their developmental level.

Symptoms of grief in younger children: Nervousness Uncontrollable rages Frequent sickness Accident proneness Antisocial behavior Rebellious behavior Hyperactivity Nightmares Depression Compulsive behavior Memories fading in and out Excessive anger Excessive dependency on remaining parent Recurring dreams...wish-filling, denial,

disguised

Symptoms of grief in older children: Difficulty in concentrating Forgetfulness Poor schoolwork 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 undereating Truancy Experimentation with alcohol/drugs Depression Secretiveness Sexual promiscuity Staying away or running away from home Compulsive behavior

References:

Brown-Saltzman, K. (2006). Transforming the grief process. In R. Carroll-Johnson, L. Gorman, & N. J. Bush, Psychosocial nursing care: Along the cancer continuum, 2nd edition. Pittsburgh, PA: Oncology Nursing Press, Inc.


Doka, K. (2002). Disenfranchised grief: New directions, challenges and strategies for practice. Champaign, IL: Research Press.

Doka, K. (1989). Grief. In R. Kastenbaum, & B. Kastenbaum (Eds.). Encyclopedia of death. Phoenix, AZ: The Oryx Press.

Loney, M. (1998). Death, dying, and grief in the face of cancer. In C. C. Burke (Ed.), Psychosocial dimensions of oncology nursing care. Pittsburgh, PA: Oncology Nursing Press, Inc.

Parkes, C. M., & Prigerson, H. (2009). Bereavement: Studies of grief in adult life (4th ed.). Oxon, UK: Routledge.

Rando, T. (Ed.). (2000). Clinical dimensions of anticipatory mourning. Champaign, IL: Research Press.

Worden, J. W. (2009). Grief counseling and grief therapy: A handbook for the mental health practitioner (4th ed.). New York, NY: Springer Press.

Module 7Table 2: Normal Grief Reactions

Physical Emotional Cognitive Behavioral hollowness in

stomach tightness in chest heart palpitations sensitivity to noise breathlessness weakness tension lack of energy dry mouth gastrointestinal

disturbances loss of libido increase in appetite,

loss of appetite weight gain or loss exhaustion tight throat vulnerable to illness restlessness headaches dizziness muscle aches sexual dysfunction insomnia tremors, shakes

numbness relief emancipation sadness yearning anxiety fear anger guilt and self-reproach shame loneliness helplessness hopelessness abandonment loss of control emptiness despair ambivalence loss of ability for

pleasure shock

disbelief state of depersonalization

confusion inability to

concentrate idealization of the

deceased preoccupation with

thoughts or image of the deceased

dreams of the deceased

sense of presence of deceased

fleeting, tactile, olfactory, visual and auditory hallucinatory experiences

search for meaning in life and death

impaired work performance

crying withdrawal avoiding reminders of

the deceased seeking or carrying

reminders of the deceased

over-reactivity changed relationships

References:

Doka, K. (1989). Disenfranchised grief: Recognizing hidden sorrow. New York, NY: Lexington Books.

Parkes, C. M. & Prigerson, H. (2009). Bereavement: Studies of grief in adult life (4th ed.). Oxon, UK: Routledge.


Module 7 Table 3: Stages and Tasks of Grief

Stage of Grief Tasks CharacteristicsStage 1:

Notification and shock Share acknowledgement of the reality of the loss by assessing the loss, recognizing the loss.

Assists the survivor in coping with the initial impact of the death

Survivor may have feelings of numbness, difficulties with decision making, poor daily functioning, emotional outbursts, denial, isolation, avoidance

Feelings should eventually decrease and subside as the survivor moves onto the next stage

Stage 2:

Experience the loss emotionally and cognitively

Share in the process of working through the pain by reacting to, expressing and experiencing the pain of separation/grief

Confrontation, anger, bargaining, depression Survivor may be angry at loved one who has died,

"abandoned them," "left them behind"; anger may be directed at physician, nurse, other health care professionals, family members, friends

Survivor may feel guilt based on perceptions that he/she or others did not do enough to prevent the death, he/she did not take good enough care of the deceased

Survivor may ask questions, "What if....," "If only..."

Survivor may experience sadness, loneliness, emptiness, lack of interest in daily life, insomnia, loss of or increase in appetite, apathy, disorganization

Stage 3:

Reintegration

Reorganize and restructure family systems and relationships and reinvest in other relationships and life pursuits by adjusting to an environment without the deceased; relinquishing old attachments; forming new identity without deceased, adapting to new role while retaining memories

Survivor may begin to reorganize their life, find hope in the future, feel more energetic, participate in social events, acceptance

References:


Corr, C. A., & Doka, K. J. (1994). Current models of death, dying and bereavement. Critical Care Nursing Clinic of North America, 6(3), 545-552.

Kubler-Ross, E. (1969). On death and dying. New York, NY: MacMillan.

Rando, T. A. (1984). Grief, dying and death: Clinical interventions for caregivers. Champaign, IL: Research Press Co.


Module 7Table 4: Unhelpful & Helpful Comments in Speaking with the Bereaved

Unhelpful Comments Helpful CommentsI know exactly how you're feeling. I am sorry that you are going through this

painful process.I can imagine how you are feeling. It must be hard to accept that this has

happened.I understand how you are feeling. It's OK to grieve and be really angry with God

and anyone else.I'm always here for you, call me if you need anything.

I can bring dinner over either Tuesday or Friday. Which will be better for you?

You should be over it by now. It's time you moved on.

Grieving takes time. Don't feel pushed to hurry through it.

You had so many years together. You are so lucky.

I did not know __________, will you tell me about him? What was your relationship like?

At least you have your children. It's not your fault. You did everything you could do.

You're young, you'll meet someone else. What's the most scary part about facing the future alone without __________?

At least her suffering is over. She is in a better place now.

You will never forget __________, will you?

He lived a really long and full life. It's not easy for you, is it? What about your relationship will you miss the most?

How old was he? He meant a lot to you.

Adapted: Klein, S. (1998). Heavenly hurts: Surviving AIDS-related deaths and losses. New York, NY: Baywood Publishing

Company. Reprinted with permission.

Module 7Table 5: Coping with Professional Anxiety in Terminal Illness

COPING WITH PROFESSIONAL ANXIETYIN TERMINAL ILLNESS

STAGE VI>24 MONTHS

STAGE V12-24 MONTHS

THE DOER

STAGE IV9-12 MONTHS

DEEP COMPASSION

ACTUALIZES: KNOWLEDGE

WISDOM

Inner Person

STAGE III6-9 MONTHS

EMOTIONALARRIVAL

ACHIEVES

SELF-REALIZATION

SELF-AWARENESSSELF-

ACTUALIZATION

POWER STRENGTH

STAGE II3-6 MONTHS

DEPRESSIONSKILLS

MODERATIONMITIGATION

ACCOMMODATION

STAGE I1-3 MONTHS

EMOTIONALSURVIVAL

EXPERIENCESPAIN

MOURNINGGRIEVING

INTELLECTUALIZA-TION EXPERIENCES

TRAUMA

KNOWLEDGEANXIETY

LINE OF “COMFORT-ABILITY”

Source: Harper, B. C. (1994). Death: The coping mechanism of the health professional. Greenville, SC: Southeastern

University Press. Reprinted with permission.

Module 7Table 6: Inventory of Complicated Grief

PLEASE fill in the circle next to the answer which best describes how you feel right now:

1. I think about this person so much that it’s hard for me to do the things I normally do… never rarely sometimes often always

2. Memories of the person who died upset me… never rarely sometimes often always

3. I cannot accept the death of the person who died… never rarely sometimes often always

4. I feel myself longing for the person who died… never rarely sometimes often always

5. I feel drawn to places and things associated with the person who died… never rarely sometimes often always

6. I can’t help feeling angry about his/her death… never rarely sometimes often always

7. I feel disbelief over what happened… never rarely sometimes often always

8. I feel stunned or dazed over what happened… never rarely sometimes often always

9. Ever since s/he died it is hard for me to trust people… never rarely sometimes often always

10. Ever since s/he died I feel like I have lost the ability to care about other people or I feel distant from people I care about… never rarely sometimes often always

11. I have pain in the same area of my body or have some of the same symptoms as the person who died… never rarely sometimes often always

12. I go out of my way to avoid reminders of the person who died… never rarely sometimes often always

13. I feel that life is empty without the person who died… never rarely sometimes often always

14. I hear the voice of the person who died speak to me… never rarely sometimes often always

15. I see the person who died stand before me… never rarely sometimes often always

16. I feel that it is unfair that I should live when this person died… never rarely sometimes often always

17. I feel bitter over this person’s death… never rarely sometimes often always

18. I feel envious of others who have not lost someone close… never rarely sometimes often always

19. I feel lonely a great deal of the time ever since s/he died… never rarely sometimes often always

Source:

Prigerson, H. G., Shear, M. K., Frank, E., Beey, L. C., Silberman, R., Prigerson, J., et al. (1997). Traumatic grief: A case of

loss-induced trauma. American Journal of Psychiatry, 154(7), 1003-1009. Reprinted with permission from the American Journal of Psychiatry, Copyright 1997, American Psychiatric Association.

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

Helping Children Cope with Grief: Remember the CHILD

C-Consider Unique situation of the child His/her developmental capacity to understand His/her concerns, thoughts, feelings, and relationship the person who

died

H-Honesty Use the “d” words: death, die, dying Realize that it is all right to not have all the answers Avoid euphemisms Avoid words such as gone away or went on a trip Do not explain to a child that the dead person is sleeping

I-Involve Let the child know what is happening; if possible, before the death occurs

Give the child factual knowledge about the cause of death – especially the school-age child

Involve the child in saying good-bye to the dying and deceased – allow the child the choice to participate in the funeral to the level at which he/she is comfortable

L-Listen Concentrate on discussing the stumbling block of the moment Let the child talk through what is on his/her mind Let the child know that it is all right to not want to talk to anyone

anymore about the death for a while Give the child outlets for expressing his/her grief – art, drawing,

play, writing letters, poetry, stories, hammering Be aware of thoughts and fantasies children may have of being

reunited with the person who has died Careful attention to any suggestion of suicidal risk, no matter what

the age of the child Clarify that death is NOT the result of the child’s action or thoughts;

be attuned to magical thinking involved in the child’s explanation of the death and correct it to avoid guilt and inappropriate grief reactions

D-Do it over and over again

Appropriately share your grief; realize that children cannot do grief work without permission and role models

Children need to see an honest expression of emotions from adults Keep in mind the developmental capacities of the child and his/her

age-related concerns and needsSource: Davies, B., & Orloff, S. (2010). Bereavement issues and staff support. In G. Hanks, N.I. Cherny, N.A. Christakis,

M. Fallon, S. Kaasa, & R.K. Portenoy (Eds.). Oxford textbook of palliative medicine (4th ed., p. 1370). Oxford, UK: Oxford University Press. Reprinted with permission of Oxford University Press in the format Copy via Copyright Clearance Center.

Module 7TABLE 8: INTERVENTIONS FOR GRIEVING CHILDREN

Explanation of Death Silence about death does not help children deal with loss. When discussing death with a

child, the explanation should be kept as simple and direct as possible. Each child needs to be told the truth with as much detail as can be comprehended at his or her age and stage of development. Questions should be addressed honestly and directly. Children need to be reassured about their own security (they frequently worry that they will also die, or that their surviving parent will go away). Children’s questions should be answered, making sure that the child processes the information.

Correct language Although it is a difficult conversation to initiate with children, any discussion about death

must include proper words (e.g., “cancer,” “died,” “death”). Euphemisms (e.g., “passed away,” “he is sleeping,” “we lost him”) should never be used because they can confuse children and lead to misinterpretations.

Planning Rituals After a death occurs, children can and should be included in the planning and participation of

mourning rituals. As with bereaved adults, these rituals help children to memorialize loved ones. Although children should never be forced to attend or participate in mourning rituals, their participation should be encouraged. Children can be encouraged to participate in those aspects of funeral or memorial services with which they feel comfortable. If the child wants to attend the funeral (wake, memorial service, etc.) it is important that a full explanation of what to expect is given in advance. This preparation should include the layout of the room, who might be present (e.g., friends and family members), what the child will see (e.g., a casket, people crying), and what will happen. The surviving parent may be too involved in his or her own grief to give their child the attention needed, therefore, it is often helpful to identify a familiar adult friend or family member who will be assigned to care for the grieving child during the funeral.

References:

Fitzgerald, H. (1992). The grieving child: A parent’s guide. New York, NY: Fireside.

Kastenbaum, R. (2000). Death, society, and human experience (7th ed.). Boston, MA: Allyn and Bacon.

Module 7

Table 9: Supporting Grieving Families

General Stay with the family; sit quietly if they prefer not to talk; cry with them if desired. Accept the family’s grief reactions; avoid judgmental statements (e.g. “You should be feeling better

by now”). Avoid offering rationalizations for the patient’s death (e.g. “You should be glad your loved one isn’t

suffering anymore”). Avoid artificial consolation (e.g. “I know how you feel”). Deal openly with feelings such as guilt, anger, and loss of self-esteem. Focus on feelings by using a feeling word in the statement (e.g. “You’re still feeling all the pain of

losing a loved one”). Where available refer the family to an appropriate self-help group or for professional help if needed.

At the Time of Death Reassure the family that everything possible is being done for the patient. Do everything possible to ensure the patient’s comfort, especially relieving pain. Provide the patient and family the opportunity to review special experiences or memories in their

lives. Express personal feelings of loss and/or frustrations (e.g. “We will miss him so much,” or “We tried

everything; we feel so sorry that we couldn’t save him”). Provide information that the family requests and be honest. Respect the emotional needs of family members, including children, who may need brief respites

from the dying patient. Make every effort to arrange for family members, including being with the patient at the moment of

death, if they wish to be present. Allow the family to stay with the dead patient for as long as they wish. Provide practical help when possible, such as collecting the patient’s belongings. Arrange for spiritual support, such as clergy; pray with the family if no one else can stay with them.

After the Death Attend the funeral or visitation if there was a special closeness with the family. Initiate and maintain contact (e.g. sending cards, telephoning, inviting them back to the unit, or

making a home visit). Refer to the dead patient by name; discuss shared memories with the family. Discourage the use of drugs or alcohol as a method of escaping grief. Encourage all family members to communicate their feelings rather than remaining silent to avoid

upsetting another member. Emphasize that grieving is a painful process that may last for years.

Adapted from: Hockenberry, M., & Wilson, D. (2008). Wong’s nursing care of infants and children (8th ed.). St. Louis, MO:

Mosby. Reprinted with permission.

Module 7Figure 1: Personal Loss History

1. The first death I can remember was the death of:

2. I was age:

3. The feelings I remember I had at the time were:

4. The first funeral (wake or other ritual service) I ever attended was for:

5. I was age:

6. The thing I most remember about that experience is:

7. My most recent loss by death was (person, time, circumstances):

8. I cope with this loss by:

9. The most difficult death for me was the death of:

10. It was difficult because:

11. Of the important people in my life who are now living, the most difficult death for me would be the death of:

12. It would be the most difficult because:

13. My primary style of coping with loss is:

14. I know my own grief is resolved when:

15. It is appropriate for me to share my own experiences of grief with a client/patient when:

Source: Worden, J. W. (2009). Grief counseling and grief therapy: A handbook for the mental health practitioner (4th ed.).

New York, NY: Springer Publishing Company, Inc. Used by permission.

Module 7Figure 2: Loss Exercise

LIST YOUR...

5 Most prized possessions (material things)

5 Favorite activities

5 Most valuable body parts

5 Values that are most important to you

5 People you love the most

As I tell you this story, cross out as many items as I tell you.

Imagine: It is a lovely spring day - you know the kind, one of the first days when the snow has melted and the flowers are blooming up north or down here the temperatures are comfortable and the birds are singing.

You are young and successful and happy with your life.

You step in the shower anxious to get on with the day. While you soap yourself you discover a small lump on your neck and another in your breast.

CROSS OUT TWO ITEMS

Probably swollen glands from your recent cold (premenstrual changes) you think, and ignore it and go on with your life.

Two and one-half weeks later it is still there.

CROSS OUT TWO ITEMS

Probably cold returning - you've been busy, not resting, You've had cystic breasts, you rationalize and life goes on but something keeps nagging at you so you make an appointment to see your doctor.

CROSS OUT ONE ITEM

The doctor, after examining you and ordering a mammogram, she says, "I'm sure it's nothing but I'd like to biopsy it just in case, so we'll schedule you for surgery the end of the week."

CROSS OUT THREE ITEMS

You decide to have a biopsy (frozen section) done, and to go ahead with a mastectomy if the lump is malignant, though everyone assures you that it is not.

CROSS OUT TWO ITEMS

You pull your way up through the fog in the recovery room and feel the mass of bandages on your chest. Your worst fears have been confirmed!

CROSS OUT FOUR ITEMS

You recover and have radiation treatment, just in case.

CROSS OUT TWO ITEMS

Slowly you recover your strength and life returns to normal - almost.

It is spring again, two years later. You have a cold. You ignore it as usual but it doesn't go away and one morning, to your surprise, you find it difficult to breathe.

CROSS OUT TWO ITEMS

Lung metastasis, you feel your world turn upside down again. That wonderful defense mechanism of denial must be let go. You begin chemotherapy and are very sick, weak and angry. You lash out at your family, doctors, friends. You want to live but you cannot eat.

CROSS OUT TWO ITEMS

One morning you do not have enough energy to sit in a chair and the doctor tells you the chemotherapy is not working and he wants to stop it.

CROSS OUT THREE ITEMS

It seems like life goes on around you in slow motion. Days and nights blur. How odd you think, staring at your bony hand, as your body deteriorates your spirit seems to be withdrawing also. You wonder if it's the pain medication or if it's the first taste of death but you do not have the energy to ask anyone.

CROSS OUT THE LAST TWO ITEMS

Source: Fauser, M., Lo, K., & Kelly, R. (1996). Trainer certification program [Manual]. Largo, FL: The Hospice Institute of

the Florida Suncoast. Reprinted with permission.

DISCUSSION QUESTIONS FOR LOSS EXERCISE:

1. Break into groups.

2. Try to get in touch with your most predominant feelings during the exercise.

3. What was it like to have to select and cross off items?

4. What did you cross out first? Last?

5. Was it harder to cross out as you went or did you give up?

Module 7

Figure 3: Opportunity for Reminiscing

Reminiscing

In addition to sharing pictures, items, and favorite stories about your loved one, the gollowing questions offer an opportunity for personal reflections and sharing about the meaning and purpose of a loved one’s life.

What will you never forget about ?

What did you like most about ?

What was unusual or out of character for ?

What was the favorite expression of ?

What was a favorite song or type of music of ?

What was favorite way of doing things?

What qualities of would you like to have?

What do you hope that others will always remember about ?

If were face to face with you now, what would you say or do?

How would you describe to a stranger?

Source:Humphrey, G.M., & Zimpfer, D.G. (1996). Counseling for grief and bereavement. Thousand Oaks, CA: Sage

Publications. Permission granted by Sage Publications Ltd. in the format of Copy via Copyright Clearance Center.

elnec - paliativnimedicina.cz€¦ · web viewm7-45 table 3 stages and tasks of grief. m7-46...

Documents