Grief, and Bereavement Marianne LaPorte Matzo, PhD, APRN, BC, FAAN I n the last 5 years, numerous projects have been initiated throughout the Deborah Witt Sherman, PhD, APRN, BC, FAAN Karen Lo, MS, RN, CRNH United States intended to improve Kathleen A. Egan, MA, RN, CHPN end-of-life care, as well as promoting Marcia Grant, DNSc, RN, FAAN a peaceful, respectful death. Millions Anne Rhome, MPH, RN of dollars in funding have been awarded by the Soros Foundation and the Robert Wood Johnson Foundation to facilitate the actualization of these Teaching loss, grief, and bereavement to nursing students should be goals. The wide range of projects that an interactive process to stimulate critical thinking and address the they have funded places them as na- affective domain of learning. Lecture as a teaching methodology tional leaders in the development of may be the easiest to prepare and deliver; however, used alone, it is educational tools for health profes- ineffective in identifying perceptions, fears, and issues related to sionals regarding the provision of dying and death. Personal and professional experiences of loss, grief, competent end-of-life care. and bereavement are central to student’s learning of effective and The End of Life Nursing Educa- compassionate care of the dying patient and their family. Strategies tion Consortium (ELNEC) is a 3-mil- that explore such experiences allow students to move forward and lion dollar project funded by the focus on the cognitive retention of content related to loss, grief, and Robert Wood Johnson Foundation to bereavement, as well as the ability to learn related psychomotor investigators at the City of Hope Med- skills. The authors discuss pedagogical methods for teaching student ical Center in collaboration with the nurses about loss, grief, and bereavement utilizing the End of Life American Association of Colleges of Nursing Education Consortium (ELNEC) curriculum training Nursing. This consortium of nursing materials. organizations ensures that the ELNEC project brings together important nursing constituencies and expert clinicians and educators in pallia- tive/hospice care to develop a cur- • Module 5: Cultural Considera- rather is essential across all life-threat- riculum to improve nursing care at the tions in End of Life Care; ening illnesses and in cases of sudden end of life. The ELNEC curriculum • Module 6: Communication; death; and interdisciplinary care is es- was developed through the work of • Module 7: Grief, Loss, Bereave- sential for quality care at the end of project consultants with extensive ment; life. input from the Advisory Board and re- • Module 8: Preparation and Care This article presents some of the viewers. It was developed as a “Train for the Time of Death; and strategies and resources to teach the the Trainers” course, with the inten- • Module 9: Achieving Quality Care ELNEC module entitled Grief, Loss, tion that those trained in the ELNEC at the End of Life. and Bereavement. This module ad- curriculum would be vital forces in its dresses the challenging aspects of dissemination in undergraduate nurs- loss, grief, and bereavement of pa- ing and continuing education pro- The ELNEC curriculum also in- grams. cludes several common threads inte- Over a 3-day program, 9 modules grated throughout all of the modules. were presented in didactic and inter- The themes are as follows: the family Authors’ affiliations: Union Institute and active learning training sessions. The as the unit of care; the important role University, Cincinnati, Ohio (Dr. Matzo); of the nurse as advocate; the impor- New York University, New York, NY (Dr. topics of the 9 modules address the Sherman); The Hospice Institute of the critical aspects of end-of-life care, as tance of culture as an influence at the Florida Suncoast, Largo, Fla (Ms. Lo and follows: end of life; the critical need for atten- Egan); City of Hope National Medical Cen- tion to special populations such as ter, Duarte, Calif (Dr. Grant), American As- • Module 1: Nursing Care at the children, the elderly, the poor, and the sociation of Colleges of Nursing, Washing- End of Life; uninsured; end-of-life issues impact ton, DC (Ms. Rhome). • Module 2: Pain Management; all systems of care across all settings; Corresponding author: Marianne La- • Module 3: Symptom Manage- critical financial issues influence end- Porte Matzo, PhD, APRN, BC, FAAN, PO ment; of-life care; end-of-life care is not con- Box 342, Goffstown, NH 03046-1342 • Module 4: Ethical/Legal Issues; fined only to cancer or AIDS, but (mmatzo@tui.edu).
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tients and their families, as well as the Grief, Loss, and Bereavement Module Content loss experiences of nurses them- selves. The 3 key messages that Introduction should be communicated to learners 1. Patient, family, and nurse 2. Nurse’s role are as follows: (1) Even with the pro- vision of excellent palliative care, The Grief Process losses—of one’s own life, or that of a 1. The process 2. Loss, mourning, grief and bereavement loved one—create intense grief. (2) a. Loss Palliative care can facilitate adapta- b. Mourning tion to loss and greatly relieve dis- c. Grief tress and suffering. (3) Nurses also re- d. Bereavement e. Cultural considerations quire support for their own grief in 3. Types of grief caring for the terminally ill. The ob- a. Anticipatory grief jectives for this module are that par- b. Normal grief ticipants will define loss, mourning, c. Complicated grief grief, and bereavement; distinguish iii. Types iii. Risk factors between anticipatory grief, normal iii. Complicated reactions grief, complicated grief, and disen- 1. Disenfranchised grief franchised grief; describe the tasks of 2. Children’s grief grief and list factors that may signifi- a. Based on age and developmental level b. Symptoms of grief in younger children cantly affect the grief process; pro- c. Symptoms of grief in older children vide interventions that may be appro- i. Stages and tasks of grief priate to facilitate normal grief; define ii. Factors affecting the grief process personal death awareness and cumu- Grief Assessment lative loss associated with profes- 1. Who sional caregiving; and identify sys- 2. When tems of support the nurse can access 3. Nursing assessment of grief a. Type of grief to assist in coping with death anxiety b. Grief reactions and loss. This article includes peda- c. Stages and tasks of grief gogical techniques and key content d. Factors that affect the grief process areas (Figure 1) for including the de- e. Assessment f. Bereavement assistance velopment of coping and support Bereavement Interventions skills for loss, grief, and bereavement 1. Plan of care in the undergraduate nursing curricu- 2. Attitude lum. 3. Cultural practices 4. What to say 5. Anticipatory grief Loss, Grief, and a. Emotional support Bereavement Competencies b. Encourage verbalization c. Assist with role change, education and/or resources in Nursing Education d. Encourage life review e. Educate the patient/family about dying process Loss, grief, and bereavement can af- f. Encourage patient/family to complete unfinished business fect the patient, family, and nurse. g. Provide presence, active listening, touch and reassurance Each survivor and professional care- h. Decrease sense of loss giver experiences grief in their own 6. Grief interventions way, and with their own coping skills. a. Presence, active listening, touch, silence b. Identify and facilitate support systems Grief is experienced within the con- c. Use of bereavement specialists, bereavement resources text of the individual’s cultural norms, d. Normalizing grief process and individual differences belief systems, faith systems, and life e. Actualizing the loss and facilitating living without the deceased experiences, and affects survivors f. Identifying and expressing feelings g. Disenfranchised grief-acknowledgment physically, psychologically, socially, h. Public funerals, memorial services, rites, rituals and traditions; private rituals and spiritually.1 i. Spiritual care The American society is a death- j. Identifying need for additional assistance and making referrals denying society. As such, Americans 7. Bereavement interventions for children and parents often deny the need to express grief 8. Completion of the grieving process and feel the pain that accompanies a Figure 1. Grief, Loss, and Bereavement Module Content. (Continues) loss, which are both beneficial to healing. The nurse’s role includes fa- cilitating the grief process by assess- Nurses should utilize an interdiscipli- grief process of patients experiencing ing grief and assisting the survivor to nary team (nurses, social workers, life-limiting illness as well as that of feel and express the loss, and com- volunteers, grief and bereavement their family. Each discipline can con- plete the tasks of the grief process. counselors, physician) to facilitate the tribute expertise to the plan of care
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Teaching and Support knowledge and skills in end-of-life ings and evoke compassion and em- Strategies care promote competence and self- pathy for those who have experi- confidence, which decreases anxiety in enced loss. In a loss exercise, partici- Consequently, faculty should incorpo- caring for patients at the end of life and pants are asked to identify and make rate strategies necessary to develop a supports them through the process of a list of things, people, hobbies, body system of support as a part of profes- loss, grief, and bereavement. parts, and/or values that are important sional role development. These strate- Recognizing the cultural, educa- to them. Then, a scenario of a patient gies include finding balance, develop- tional, and age diversity of nursing with a life-limiting illness is read. At ment of support systems, and students, and modeling compassion- intervals when the patient experi- education in end-of-life care. Balance ate care are vital to the success of ences decline, the participant is asked is the ability to find equilibrium be- learning experiences. The didactic to cross out several items, eventually tween the stresses of providing com- and experiential presentation of the leaving them with nothing on the passionate, quality care to dying pa- ELNEC teaching materials is aug- page. It is important for a discussion tients and their families, and finding mented with literature, exemplars, session to follow this exercise. In the personal satisfaction and rewards and case studies. As faculty, our ex- small groups, students should be in this work. The purpose of a system perience has taught us that experien- asked to try to get in touch with their of support is to reduce the effects of tial learning and role modeling are most predominant feelings during the death anxiety and cumulative loss by equally as important as the didactic exercise. What was it like to have to assisting the student nurse in explor- content that is presented. select and cross off items? What did ing and expressing feelings associated At the very start of the ELNEC ed- they cross out first? Last? Was it harder with anxiety, loss, and the grief expe- ucational session, participants are re- to cross out as they went through the rienced when caring for dying pa- minded that there will always be exercise, or did they give up? Even tients and their families.4 someone in their audience who has though this is a paper-and-pencil ex- Utilization of formal support experienced a recent death and/or ercise related to loss, students con- systems can include preplanned gath- may have unresolved grief issues. To ceptually experience loss as it relates erings where students can express illustrate, participants are asked to to them and can better connect with feelings in a safe environment. Post- raise their hands in response to a se- their patient’s experiences. clinical debriefing after the death can ries of questions (with the option of The loss history and the loss ex- help relieve anxieties by allowing the participating or not). These questions ercise can trigger emotions in partici- student to relate the emotion to the include whether they have lost a close pants and memory of resolved, unre- experience and explore and express friend or family member to death, solved, or imagined losses. Adults feelings related to dying and death. how long ago this death was, how tend to prefer an informal, nonthreat- Ceremonies and programs to ac- many are experiencing an anniversary ening learning environment, and knowledge and express grief, such as of the death, and how many were sometimes loss exercises can be planned memorial services for all pa- taught in their basic educational pro- threatening. It is crucial that a quali- tients who have died, are formal sup- gram about the grief process. fied leader with strong grief and be- port rituals that the student nurse can Throughout the didactic presenta- reavement background and group share, not only with each other, but tion various teaching strategies are process skills facilitate this exercise to also with the professional nursing utilized. During the discussion about minimize associated threats. These ex- staff and bereaved family members. children’s grief, The Fall of Freddie the ercises should be introduced to par- Informal support is one-to-one Leaf by Leo Buscaglia5 is read, starting ticipants with an understanding of the sharing of experiences with the nurs- from the section about “fall” to the responses that might be felt, and with ing staff, peers, instructor, pastoral care end of the story. This story can raise the knowledge that someone will sup- workers, and physicians. Instructor strong emotional reactions in learners, port them if needed. Adequate de- support occurs via the presence of a and faculty should be prepared to briefing of thoughts, feelings, and atti- supervisor, mentor, or faculty during support students who have an emo- tudes should also be done after the care of the dying, when a family tional response to the story. completion of the exercise. member visits, and/or at the time of When the focus of the content Case studies provide a more the patient’s death. This supportive turns to the nurse’s grief and bereave- complex learning experience; they presence can greatly decrease anxiety ment issues, interventions for faculty can involve patient, family, or sur- and provide immense support to the to help the beginning nursing student vivor grief and bereavement-related student nurse; the student will often process these feelings is discussed. scenarios. The participant can be find comfort in knowing she/he is not Figure 2 offers specific suggestions asked to do a bereavement assess- alone. Spiritual support from pastoral that faculty can use to support the stu- ment, identify signs and symptoms of care workers and/or spiritual advisors dent through the learning process. anticipatory grief, describe losses ex- can assist the student in spiritual re- Cumulative loss exercises may perienced by a patient, discuss be- flection, exploration, and spiritual re- provide exploration and expression of reavement interventions, and/or de- plenishment. Failure to effectively sup- the feelings associated with loss and termine normal versus complicated port a student’s grieving can be a factor grief. A loss exercise (Figure 3) can be survivor grief reactions. A case study in attrition. Lastly, student nurses can- a powerful methodology to assist the allows the educator to stimulate criti- not practice what they do not know; participant in identifying these feel- cal thinking, match the case to the
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explore such experiences allow par- First, list... ticipants to move forward and focus • your 5 most prized possessions (material things) • your 5 favorite activities on the cognitive retention of content • your 5 most valuable body parts related to loss, grief, and bereave- • the 5 values that are most important to you ment, as well as the ability to learn re- • the 5 people whom you love the most lated psychomotor skills. Nursing care and responsibilities to Next, as I tell you this story, cross out as many items on your list as I tell you. Imagine it is a lovely spring day-you know the kind, one of the first days when the snow the dying patient and their family do has melted and the flowers are blooming up north or down here the temperatures are not end with the death of the patient. comfortable and the birds are singing. You are young and successful and happy with Potential loss and grief issues should be your life. You step in the shower anxious to get on with the day. While you soap yourself assessed upon admission of the patient, you discover a small lump on your neck and another in your breast. and bereavement care should continue Cross Out Two Items after their death. Like all healthcare pro- 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. fessionals, nurses must recognize and respond to their own grief in order to Cross Out Two Items Probably cold returning-you’ve been busy, not resting.You’ve had cystic breasts, you ra- provide quality palliative care to the tionalize, and life goes on; but, something keeps nagging at you so you make an ap- dying patient and their family. pointment to see your doctor. We encourage educators in all Cross Out One Item settings to attend an ELNEC training The doctor, after examining you and ordering a mammogram, says, “I’m sure it’s noth- course to learn more about all 9 of the ing but I’d like to biopsy it just in case, so we’ll schedule you for surgery the end of the end-of-life nursing education topics. week.” The ELNEC Web site (www.aacn. Cross Out Three Items nche.edu/elnec/) will also help edu- You decide to have a biopsy (frozen section) done, and to go ahead with a mastectomy cators gain information about future if the lump is malignant (though everyone assures you that it is not). ELNEC courses and to identify others Cross Out Two Items in their state who have been ELNEC You pull your way up through the fog in the recovery room and feel the mass of ban- dages on your chest. Your worst fears have been confirmed! trained and to collaborate with them in planning educational activities. Cross Out Four Items You recover and have radiation treatment, just in case. Cross Out Two Items Acknowledgment Slowly you recover your strength and life returns to normal-almost. It is spring again, 2 years later. You have a cold. You ignore it as usual but it doesn’t go away; one morning, This article is based on the End of Life to your surprise, you find it difficult to breathe. Nursing Education Consortium Project Cross Out Two Items (ELNEC), which is supported by a grant Lung metastasis. You feel your world turn upside down again. That wonderful defense from the Robert Wood Johnson Foun- mechanism of denial must be let go. You begin chemotherapy and are very sick, weak, dation to the American Association of and angry. You lash out at your family, doctors, and friends. You want to live but you can- Colleges of Nursing (Geraldine Bed- not eat. nash, PhD, FAAN, Principal Investiga- Cross Out Two Items tor) and City of Hope National Medical One morning you do not have enough energy to sit in a chair; the doctor tells you the chemotherapy is not working and he wants to stop it. Center (Betty Ferrell, PhD, FAAN, Prin- cipal Investigator). Cross Out Three Items It seems like life goes on around you in slow motion. Days and nights blur. How odd you think, starring at your bony hand, as your body deteriorates your spirit seems to be with- drawing also. You wonder if it’s the pain medication or if it’s the first taste of death, but References you do not have the energy to ask anyone. Cross Out The Last Two Items 1. Potter M. Loss, suffering, bereavement and grief. In: Matzo ML, Sherman DW, eds. Palliative Care Nursing: Quality Care Figure 3. Loss Exercise. Reprinted with permission from Fauser M, Lo K, Kelly R,Trainer Cer- to the End of Life. New York, NY: tification Program [Manual]. Largo, FL: The Hospice Institute of the Florida Suncoast, 1996. Springer; 2001:275-306. 2. Harper B. Death: The Coping Mechanism of the Health Professional. Greenville, SC: gies, they are valuable because they structive and practical presentation of Southeastern University Press; 1994. allow for skill practice in the best the teaching materials related to loss, 3. Rando AT. Grief, Dying and Death: Clini- learning environment: the real world. grief, and bereavement was aug- cal Interventions for Caregivers. Cham- mented with literature, assessment paign, Ill: Research Press; 1984. 4. Vachon M. The nurse’s role: the world of techniques, and case studies. Personal Conclusion and professional experiences of loss, palliative care nursing. In: Ferrell BR, Coyle N, eds. Textbook of Palliative Nurs- As of July 2002, 646 nursing faculty grief, and bereavement are central to ing. New York, NY: Oxford University participants and 277 continuing edu- student nurses’ learning of effective Press; 2001:647-662. cation faculty received ELNEC training and compassionate care of the dying 5. Buscaglia L. The Fall of Freddie the Leaf. during a total of 10 courses. The in- patient and their family. Strategies that Thorofare, NJ: Slack; 1982.
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Dial It Down: A Wellness Approach for Addressing Post-Traumatic Stress in Veterans, First Responders, Healthcare Workers, and Others in This Uncertain World