Hospice nurses routinely work with grieving

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1 CE Grief Theories and Models Applications to Hospice Nursing Practice Patricia Moyle Wright, MSN, RN Nancy S. Hogan, PhD, RN, FAAN v Hospice nurses routinely work with grieving families and provide bereavement follow-up services. However, many nursing programs do not require courses in death, dying, end-of-life care, or bereavement. The following review of grief theories and models is intended to supplement hospice nurses understanding of how perspectives on grief have changed over time and how interventions vary depending on one s viewpoint. This information helps nurses situate their clinical experiences and expertise within several theoretical models. Recommendations offered for hospice nursing practice will be derived only from empirically derived models of bereavement because evidence-based practice must be rooted in evidence-based theories. K E Y W O R D S bereavement death end of life evidence based grief hospice nursing theory Hospice nurses routinely work with grieving families, yet many nursing programs do not require courses in death, dying, end-of-life (EOL) care, or bereavement. Hospice nurses rely on commonly recommended therapeutic communication skills, such as eye contact, use of therapeutic touch, and active listening to convey empathy while emotionally supporting Author Affiliations: Patricia Moyle Wright, MSN, RN, is Assistant Professor, Department of Nursing, University of Scranton, PA. NancyS.Hogan,PhD,RN,FAAN,is Distinguished Professor and Associate Dean of Research, Marcella Niehoff School of Nursing, Loyola University Chicago, IL. Address correspondence to Patricia Moyle Wright, MSN, RN, Department of Nursing, University of Scranton, 800 Linden St, Scranton, PA (wrightp2@scranton.edu). The authors declare no conflict of interest. 350 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 10, No. 6, November/December 2008

2 hospice clients and families. However, therapeutic communication skills used when supporting grieving clients could be enhanced by an understanding of the process of grief, the background of grief theories, and knowledge of how this information can be integrated into practice. The following review of grief theories and models is intended to help supplement hospice nurses understanding of how perspectives on grief have changed over time and how interventions vary depending on one s viewpoint. This information helps nurses situate their clinical experiences and expertise within several theoretical models. Upon reading this article, hospice nurses will have gained an understanding of the major grief theories and models that influence approaches to care. With this understanding, nurses will have a theoretical foundation on which to build effective clinical interventions. Furthermore, hospice nurses will gain insights into grief interventions implemented by other members of the interdisciplinary team, such as social workers and chaplains, which may enhance interdisciplinary communication and collaboration, thereby improving bereavement support for hospice families. v GRIEF THEORIES AND MODELS Early Grief Theories Freud, 1 the father of psychoanalysis, was the first to publish a bereavement theory. He defined grief as an experience that usually follows a normal course but could lead to serious psychological consequences if the bereft failed to emotionally detach from the deceased. He postulated that healthy recovery required the severing of emotional bonds with the deceased and a return to preloss functioning. Thus, if a bereaved individual were unable to break emotional bonds with the deceased through reality testing and instead clung to the deceased through the process of hallucinatory wishful psychosis, the outcome would be the pathological condition, melancholia. Lindemann, 2 a psychiatrist, studied acute grief reactions experienced by individuals bereaved by natural causes, disaster, and war. Based on his observations, Lindemann 2 differentiated normal from abnormal reactions to loss. He noted that normal physical and psychological responses to loss included somatic disturbances, preoccupation with the image of the deceased, guilt, hostility, loss of warmth in relationships, and disorganized behavior. The work of Lindemann 2 gave rise to clinical guidelines for the identification of abnormal grief reactions. Abnormal grief reactions noted by Lindemann 2 included a delay in the grief response and distorted grief responses, such as experiencing the symptoms shown during the last illness of the deceased. Physiological and psychological syndromes included ulcerative colitis, altered social relationships, hostility, selfdestructive behavior, and agitated depression, which involved insomnia, tension, and self-blame. Like Freud, Lindemann 2 theorized that the successful outcome of grief was emancipation from emotional bondage to the deceased. (p143) Although conceptually interesting, the psychoanalytic grief theories of Freud and Lindemann were rationally generated and have not been systematically tested for validity. Grief studies, for these earliest grief theorists, essentially aimed to determine how attachment to the lost predicted the intensity and duration of the grief response, as well as the likelihood of ensuing illnesses. Bowlby 3-5 was the first bereavement theorist to base his conclusions on empirical evidence. Bowlby, 3-5 a psychoanalyst and the father of attachment theory, empirically studied how the intensity of the grief could be influenced by the type of attachment that one had to the deceased. Bowlby 3-5 identified how the circumstances surrounding the death of a loved one affected the characteristics, intensity, and duration of the bereavement process. His grief theory described a series of phases through which bereaved persons experience grief reactions and, in time, reach recovery. During the first phase, bereaved persons experience a period of numbness and shock, exhibit outbursts of extremely intense distress and/or anger, and are likely unable to comprehend the full impact of the death. This is seen as a protective defense mechanism to blunt the emotions of the bereft. The bereaved persons then enter the second phase, composed of searching and yearning (pining) for the deceased to return. This stage includes crying, anxiety, anger, self-reproach, confusion, and loss of security. The grief reactions in Stage 3 are characterized by despair and disorganization as they must learn to bear life without the loved one. Bereaved individuals who successfully complete these phases enter Phase 4, where they begin, to a lesser or greater degree, the process of reorganization and recovery. The successful movement through these phases of grief is essential to avoid untoward effects of separation-induced depressive symptoms. 3-5 The next wave of grief researchers, JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 10, No. 6, November/December

3 including Parkes and Worden, built upon previous grief theorists work and empirically derived new conceptualizations of the grieving experience. Second-Generation Grief Models Parkes, 6,7 a student and colleague of Bowlby, conducted bereavement research in Europe and the United States. He conceptualized grief as a series of shifting pictures that presented for a time and then faded out while the next phase faded in, only to peak and give way to the next wave. The research of Parkes, based on interviews with widows, communicated a dynamic, multidimensional process that represented grief in its fullness, a complex tapestry of emotions. Noting that the pictures composing the grief experience were not constant, Parkes explained why grief was not experienced uniformly. The type of loss and the uniqueness of the bereaved individual colored the pictures, accounting for the individualization of the grief experience. The shifting of these pictures was described by Parkes as phases of grief, which included numbness, pining, disorganization and despair, and recovery. The conceptualization of grief by Parkes 6,7 helped explain how grief could be felt long after the loss, such as when one visits a grave or reflects on a photograph. For hospice nurses, an understanding of the work of Parkes enhances the ability to support bereaved individuals when waves of grief engulf a bereaved client. Hospice nurses can feel more confident in the care they give bereaved clients by knowing that reactions such as regrieving episodes are normal. The work of Worden 8-10 extended bereavement theory by emphasizing the role that counselors and therapists play in offering care and comfort to grieving clients. Based on research with children and adults, Worden 8 presented a unique conceptualization of the mourning process and outlined four distinct tasks of mourning. Worden explained that the word task was chosen as it seemed to better represent the work that the mourner must do to move through the grief process. The first task that the mourner must undertake is to accept the reality of the loss. Worden made a distinction between intellectual acceptance, that is, knowing that the loss occurred, and emotional acceptance, which is a much more difficult and sometimes insurmountable task. The second task, working through the pain of grief, includes not only the pain of grief but also anxiety, anger, guilt, and other feelings associated with the loss. The third task, adjusting to an environment in which the deceased is missing, involves three types of adjustments to the loss. External adjustments involve realizing the roles that the deceased played in one s life and developing strategies to fill those roles in his/her absence. Internal adjustments refer to the ways in which the bereft need to redefine their own selves after the loss. For example, this could mean adjusting from being a wife to being a widow or from being a mother to being childless. Spiritual adjustments are also necessary after loss, indicating that loss challenges one s spiritual beliefs, causing one to explore existential issues more deeply. In the second edition of the work, Worden 9 further refined the tasks; later, a fourth task was added. 10 The fourth and last task of mourning, to emotionally relocate the deceased and move on with life, was based on the notion that survivors maintain continuing bonds 10 with the deceased. This means that the bereft find ways to move on with life while continuing to maintain an emotional bond with the deceased. Worden s work was developed primarily for counselors, but with an understanding of the process of grief, nurses can provide clients and families with information on what to expect immediately after loss and during the bereavement process. Worden s work may also help provide a framework for hospice nurses who provide bereavement visits and telephone calls, because survivors often describe the ways they have reintegrated the deceased into their lives. Continuing Bonds Theory Hospice nurses often hear bereaved family members describe a continued but changed relationship with the deceased, which was not addressed by early psychoanalytical theories of grief. The empirical discovery of the concept of ongoing attachment 11 to the deceased, characterized by bereaved individuals ongoing relationship to the deceased, was groundbreaking for grief researchers. This paradigm shift away from Freud s and Lindemann s theories of emancipation of bonds to the deceased, which had guided bereavement theory and, thus, bereavement therapy for more than 60 years, was supported by two studies 11,12 published in 1990s. Findings from a study by nurse-researchers, Hogan and DeSantis, 11 based on data from 186 adolescents bereaved of a sibling, established that instead of emancipating, bereaved adolescents actively maintained an ongoing attachment to their dead siblings. Participants 352 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 10, No. 6, November/December 2008

4 were asked to answer the question If you could ask or tell your dead sibling something, what would it be? The adolescents prevailing response was I miss you and I love you. Their responses were in the present tense regardless of the time that had elapsed since their sibling s death, indicating that the bereaved sibling maintained an ongoing attachment to the deceased. 11 Silverman and colleagues 12 published a study showing that parentally bereaved children and adolescents maintained a continuing connection to the deceased parent. Findings from this study revealed that the bereaved children and adolescents made an effort to reach out for a connection to their dead parent and maintained their attachment through transitional objects. This new insight signified a departure from the previously accepted notion that the bereft needed to sever bonds with the deceased to recover from the loss. Through qualitative research with bereaved siblings and parentally bereaved children and adolescents, the continuing bonds theory gained acceptance among grief researchers 10,13-15 and has reconceptualized grief theory and protocols for counseling bereaved children and adults. Further evidence of the acceptance of the continuing bonds hypothesis is provided by the numerous articles and books on the topic, including the widely read edited book Continuing Bonds: A New Understanding of Grief. 16 Written in 1996, it is a foundational compendium of grief research that underscores the importance and relevance of supporting the bereaved to continue their bond to their deceased loved ones. Frequently, bereaved family members of hospice patients discuss ongoing relationships with the deceased during bereavement calls or seek to honor the memory of the deceased through donations to the hospice. Thus, the concept of continuing bonds may provide a suitable frame of reference for hospice nurses working with bereaved families. Another model that may provide a suitable reference point for hospice nurses is the Dual Process Model, 17 which explains how the bereaved individuals cope with suffering through limited periods of avoidance. The Dual Process Model The Dual Process Model 17 depicted grief as an oscillatory process in which a bereaved individual alternately experiences and avoids suffering during the same period of time rather than in a linear fashion with one stage ending and another beginning. Psychologists Stroebe and Schut 17 introduced the Dual Process Model of Coping With Bereavement to address the limitations of earlier models that presented grief as a series of stages, phases, or tasks. The Dual Process Model incorporated Worden s concepts of grief work and aspects of cognitive stress theory 18 and Cook and Oltjenbrun s Model of Incremental Grief. 19 Stroebe and Schut 17 noted shortcomings in how each of the previous models represented the bereavement process and set out to develop a more dynamic representation of the grief process. Knowing that bereaved individuals suffer immensely after a loss, Stroebe and Schut 17 theorized that to cope with suffering, the bereft oscillate between two distinct ways of coping with loss. Loss-orientation refers to the person s acceptance of the suffering and involves mental processing of the loss as well as demonstrations of grief, such as crying. 17 Restoration-orientation refers to attempts to sort through various secondary losses, such as financial repercussions, and find ways to cope with these changes. 17 Stroebe and Schut 17 hypothesized that movement toward restoration-orientation provided respite from suffering by moderating the doses of suffering that one can withstand at any point in time, thus preserving the mental health of the bereaved individual. For hospice nurses, the Dual Process Model 17 provides an explanation of why the bereft either avoid the reality of the loss or dwell in suffering. As Strobe and Schut 17 noted, dwelling in intense suffering can have severe mental consequences; thus, moving beyond the pain should not be misinterpreted as a signal that the bereft have forgotten the deceased or that the grief has ended. Knowing the expected outcomes of grief, especially those that signify movement beyond intense suffering, is vitally important for hospice nurses. Although it exacts an emotional toll to be present through the suffering of the bereft, some researchers 15,20-22 have discovered positive outcomes of grief, even postulating that one can experience existential growth as an outcome of loss. In fact, Hogan and DeSantis 11 called grief the existential experience in which the bereft are confronted with the search for meaning in life and death while struggling to create a new life of purpose that incorporates their loss and suffering. This notion forced a paradigmatic turn in current understandings of the effects of loss on survivors. Transformation Theories of Grief Early grief theories hypothesized that over time the bereaved would experience decreasing intensity of grief, ultimately ending in a form of resolution, or a getting JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 10, No. 6, November/December

5 back to normal. However, more recent bereavement researchers have identified that bereaved adults and children are quantitatively and qualitatively different than they were prior to the loss. Strikingly, research with children and adolescents provided the evidence for this reconceptualization of the long-term impact of grief. Data gathered from children and adolescents during sibling bereavement meetings were used to generate grief instruments and showed that children and adolescents can experience personal growth as a result of loss. 23 Subsequent grounded theory research based on adults descriptions of their grieving resulted in the generation of an experiential theory of bereavement. The Grief to Personal Growth Theory explicates the process of grief to personal growth. 15 Prior to the development of the Grief to Personal Growth Theory, bereavement theorists had conceptualized the bereavement process as ending upon coping with the suffering of grief by reaching a point of either resolution or adaptation to the loss. However, findings from the personal growth subscale of the Hogan Sibling Inventory of Bereavement showed that bereaved adolescents believed that they had changed their priorities, had grown up faster than their friends, were more compassionate, more understanding, and more tolerant of themselves and others, and, in general, cared more deeply for their families. The adolescents believed that they were stronger because they had learned to cope with their siblings deaths. 23 A subsequent study of bereavement 24 resulted in the generation of the Experiential Theory of Bereavement. The theory has two components; the first describes how survivors witness the illness course of a loved one from diagnosis of a life-threatening disease through death. The second component defines the bereavement process from the time of loss, through suffering, emerging from the intensity of grief, and, finally, experiencing personal growth, which is evidenced as hope for a meaningful life despite the loss. Subsequent research 20,25 indicated that adults also experience personal growth as a result of grieving the death of a loved one. Regardless of the cause of death (illness, accident, suicide, or homicide), the bereaved adults experienced despair, detachment from others, and confusion about who they are without the loved one and subsequently experienced personal growth, indicating that a personal transformation had resulted from their suffering. This finding is the basis for the Grief to Personal Growth Theory. The Grief to Personal Growth Theory was subsequently tested empirically using structural equation modeling, 20 which demonstrated a pathway through grief and detachment followed by intrusive thoughts and, later, avoidance of the intensity of unbidden thoughts, feelings, and images. Social support was found to mediate the suffering and to help the bereft find new meaning and purpose in life. The pathway ended when the bereft had more good than bad days and had reached a point where they could let go of some of the intensity of their grief and begin to experience personal growth, as evidenced by becoming more hopeful about the future and more forgiving, compassionate, and tolerant of themselves and others. In the beginning of grief, hope is lost. But through caring, nonjudgmental support from hospice caretakers, nurses, and others, hope is regained. The theory also indicated that some bereaved persons become mired in grief and detachment and do not work through the process to meaning, purpose, and personal growth. For decades, grief counselors and healthcare providers have encouraged the bereft to sever ties with the deceased to achieve healing. Today, it is understood that relationships with the deceased can be continued in new ways and that grief can spur personal growth. 20 For hospice nurses, the notion that the suffering involved in loss can actually facilitate growth on the part of the bereft is comforting because it supports the idea that there is meaning in human suffering. The benefit of personal growth may apply not only for bereft family members but also possibly for hospice nurses because recent research 26 indicated that nurses experience grief when their clients die. Research is indicated to explore whether hospice nurses may actually experience existential growth because of the emotional toll of their work. v DISCUSSION Despite the expectation that hospice nurses support grieving families and provide bereavement support for up to 1 year after the loss, many nurses have not received formal education on the process of grief. A review of grief theories helps hospice nurses to form a deeper understanding of the grief process and provides a framework for their clinical experiences and interventions. Although numerous grief theories and models have been developed over the past 80 years, helping to provide insight into the experience of the bereft and the outcomes of loss, the need for evidence-based practice commits health professionals to use empirically derived and tested models for guiding clinical decision making and bereavement care. 354 JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 10, No. 6, November/December 2008

6 Additionally, hospice nursing practice is best guided by grief theories developed from a nursing perspective. Psychoanalytic theories that are well suited for counselors and therapists who intensively focus on guiding bereaved individuals through the grief process are not well suited to guide hospice nursing practice, where contact with bereaved family members is limited. Rather, theories that provide an explanation on what hospice nurses hear from bereaved family members and when referrals are needed are most useful. Theories such as the Experiential Theory of Bereavement 15 and the Grief to Personal Growth Theory 20,25 were empirically developed by nurse researchers and, therefore, can provide a foundation for caring for bereaved clients. The Grief to Personal Growth Theory 20,25 posits that bereaved individuals follow a pathway through grief that leads to personal growth. Hospice nurses should be alert for statements made by bereaved family members that indicate positive outcomes of bereavement, such as I m more tolerant of others than I used to be, I appreciate my family members more now, or I don t let the little things bother me like I used to. Such phrases indicate that the bereaved individual is moving beyond the suffering and has changed, often with a sense of becoming a better person. These statements provide important indications of healing and should be documented as such (see Figure 1). Another aspect of loss that hospice nurses should be aware of is the concept of continuing bonds or ongoing attachment. Rather than viewing such a relationship with the deceased as pathological, the nurse should be aware that most forms of ongoing attachment, such as Figure 1. Application of the grief to personal growth theory. 20 developing memorials and creating rituals of remembering the loved one, are comforting to survivors and should be encouraged and documented. Signs of negative outcomes of loss, such as intense anger, signs of deep, unrelenting depression, or statements regarding a desire to inflict harm on oneself or others, should also be documented and should prompt the nurse to collaborate with members of the interdisciplinary team to develop appropriate interventions. Hospice professionals are in a unique position to support bereaved individuals who suffer the loss of a loved one. Their role provides the opportunity to educate grieving families about the bereavement process and to help them accept that the intensity of grief will, in time, subside and that letting go of the pain is not letting go of the love. References 1. Freud S. Mourning and melancholia. In: Strachey J, ed. The Standard Edition of the Works of Sigmund Freud. Vol. 14. London, England: Hogarth Press; 1957: Originally published in Lindemann E. Symptomatology and management of grief. Am J Psychiatry Sesquicentennial Supplement. 1994;151(6). Originally published in: Am J Psychiatry. 1944;101: Bowlby J. Attachment and Loss: Attachment. New York, NY: Basic Books; Bowlby J. Loss: Sadness and Depression. New York, NY: Basic Books; Bowlby J. Attachment and Loss: Separation, Anxiety and Anger. New York: Basic Books; Parkes CM. Bereavement: Studies of Grief in Adult Life. 1st ed. Madison, CT: International Universities Press; Parkes CM. Bereavement: Studies of Grief in Adult Life. 3rd ed. Madison, CT: International Universities Press; Worden JW. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner. New York, NY: Springer Publishing Co; Worden JW. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, 2nd ed. New York, NY: Springer Publishing Co; Worden JW. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, 3rd ed. New York, NY: Springer Publishing Co; Hogan NS, DeSantis L. Adolescent sibling bereavement: an ongoing attachment. Qual Health Res. 1992;2(2): Silverman PR, Nickman SL, Worden JW. Detachment revisited: the child s reconstruction of a dead parent. Am J Orthopsychiatry. 1992;62(4): Adolfsson A, Larsson PG, Wijma B, Bertero C. Guilt and emptiness: women s experiences of miscarriage. Health Care Women Int. 2004;25: Field NP. Continuing bonds in adaptation to bereavement: introduction. Death Stud. 2006;30(8): JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 10, No. 6, November/December

7 15. Hogan NS, DeSantis L. Basic constructs of a theory of adolescent sibling bereavement. In: Klass D, Silverman P, Nickman S, eds. Continuing Bonds: New Understandings of Grief. Washington, DC: Taylor & Francis; 1996: Klass D, Silverman P, Nickman S, eds. Continuing Bonds: A New Understanding of Grief. Washington, DC: Taylor & Francis; Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud. 1999;23(3): Lazarus R, Folkman S. Stress, Appraisal, and Coping. New York, NY: Springer; Cook AS, Oltjenbruns KA. The bereaved family. In: Cook AS, Oltjenbruns KA, eds. Dying and Grieving: Life Span and Family Perspectives. Fort Worth, TX: Harcourt Brace; 1998: Hogan NS, Schmidt LA. Testing the grief to personal growth model using structural equation modeling. Death Stud. 2002;26: Kaunonen M, Tarkka M-T, Paunonen M, Laippala P. Grief and social support after the death of a spouse. J Adv Nurs. 1999; 30(6): Sansoni J, Giaquinto A. Grief of parents for a pre-born child loss [in Italian]. Prof Inferm. 2001;54(1):3-18. Translated by W. S. Blanchard. 23. Hogan NS. An Investigation of the Adolescent Bereavement Process and Adaptation [dissertation]. Chicago, IL: Loyola University Chicago; Hogan NS, Morse JM, Tason MC. Toward an experiential theory of bereavement. Omega. 1996;33(1): Hogan NS, Greenfield DB, Schmidt LA. Development and validation of the Hogan Grief Reaction Checklist. Death Stud. 2001;25: Kaunonen M, Tarkka M-T, Hautamaki K, Paunonen M. The staff s experience of the death of a child and of supporting the family. Int Nurs Rev. 2000;47: JOURNAL OF HOSPICE AND PALLIATIVE NURSING v Vol. 10, No. 6, November/December 2008