process for the patient with cancer and all those related in the system of care may begin at the time of a prognosis of Helping Patients, Families, terminal illness, but more often even Caregivers, and Physicians, before that point, at the onset of any life- in the Grieving Process limiting or life-altering condition. Every change in status will alter the ensuing Christine A. Bruce, MCAT, MDiv, LMFT trajectory to some degree. In the medical arena, the team that has focused its efforts on healing often drops out when a patient becomes ter- minally ill. Patients and family mem- bers may experience this “dropping out” as abandonment at the moment of their greatest need by the experts to whom they have entrusted their . They Physical experiences of the body and those that are emotional, cognitive, and are left to traverse the landscape of spiritual are inextricably related. The author, a hospice bereavement coordinator approaching death on their own, with all and counselor, discusses how medical professionals can become personally its emotional intensity, often without prepared to assist in the often intense and intimate passage of life into death knowing what to expect or how to inter- and later through both didactic and personal preparation. She also describes the pret what is happening to the patient major models of grief processes and illustrates the power a caring professional physically. How can medical profes- can have during the dying process and in the aftermath of a patient’s death by sionals become personally prepared to relating personal case scenarios. assist in this often intense and very inti- J Am Osteopath Assoc. 2007;107(suppl 7):ES33-ES40 mate passage of life into death and in its aftermath? The best preparation is both didactic and personal.

hen addressing , it is impor- not only by the patient, but also by all Knowledge About Grief Wtant to recognize an inextricable those involved in the patient’s care. Specifics of the grief process are being relationship between physical experi- Grief can be defined as the neu- widely investigated today as health pro- ences of the body and those that are ropsychobiological response to any kind fessionals attempt to delineate “normal” emotional, cognitive, and spiritual. of significant loss, with elements both grief from that which is “complicated or pain is paradoxical: both unde- typical and unique to each individual prolonged,” qualifying for intervention as niably real and exclusively subjective in or situation. The grief response is gen- a clinical condition. Complete under- measurability. Whether specific phys- erally associated with degrees of suf- standing of this profound experience will ical contributors to a given experience of fering, at times intense or even unbear- better prepare all care providers to offer pain can be judged to be neuropathic, able, and of widely variable duration. the most effective intervention(s) under nociceptive, or visceral in origin, all psy- Grief is a systemic event, whether the given circumstances. Such knowledge chogenic components of pain—psy- system is an individual or a larger group may also assist those working through chological, social, spiritual, and emo- of individuals thrown out of equilibrium this very natural, necessary feature of tional—will be added to the physiologic through changes brought on by loss. human life to progress to a more positive register and mediated through the cen- Mourning is the shared expression outcome. tral nervous system. The effect will be of a grief experience, important in Modern psychology, from Sigmund reverberating, greatly influencing the gaining a new equilibrium following Freud forward, has offered models of ability of patient, family, and the care- any manner of deficit, including the grief process—both descriptive and giving team to cope with the patient’s ill- decreased function or role, loss of task-oriented—that serve to define ness and gain the comfort and hope that assumed health, and diminished dreams “appropriate, healthy, normal” is so necessary to maintaining quality of the future. Grief and mourning and provide guidance through what is of life. The pain of grief is no exception, together constitute the grief process, rep- often called “the journey of grief.”1 and can be a powerful factor in the total resenting movement from life through The of loss is a universal pain experience that must be managed death and back into life again. A grief phenomenon, whereas mourning prac-

Correspondence to Christine A. Bruce, MCAT, This continuing medical education publication is supported MDiv, LMFT, 1023 Kipling Rd, Rydal, PA 19046- 3339. by an unrestricted educational grant from Purdue Pharma LP. E-mail: [email protected].

Bruce • Helping With the Grieving Process JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 • ES33 tices vary across cultures; mourners bring you let me know and I’ll have the or complicated, it is not an intrinsically their own respective life histories and nurses do something about it.’ pathologic state, but rather, a normal and context to the grief experience. There- needful adjustment response. What are fore, amid the diversity of approaches During the night, my father was given some common, predictable grief reac- to grief, three attitudes remain the basic the task of informing the patient’s husband tions? Every one of us has experienced foundation for healing practice: , that his wife was dying. Although it was not them to some degree in the face of loss. attentiveness, and respect. a part of standard medical protocol at the In the cognitive-emotional realm, there Ⅵ Empathy springs from simultaneous time, it occurred to my father to inquire of her may be disbelief, , , , awareness both of oneself and of another husband about her spiritual affiliation. The and self-reproach, , , lone- person. man responded that they were Catholics. liness, listlessness, and , shock, Ⅵ Attentiveness requires a level of per- Acting on instinct, my father called for a yearning, numbness, depersonalization, sonal comfort sufficient under extreme priest and participated in the ritual of extreme and, depending on the circumstances, circumstances to remain “tuned in”— unction with the patient and family. At 5 relief. cognitively, emotionally, and spiritually AM, approximately 12 hours after the young Grievers may become preoccupied “present.” woman’s admission to the emergency room, with their loss, and their thought pro- Ⅵ Respect entails cultural sensitivity and the patient died. A postmortem examination cesses can become confused. There may openness. revealed that she had died of Ayres disease, a be a sense of timelessness. If someone hereditary pulmonary stenosis for which there has died, there is often a sense of pres- Case Scenario was no known intervention six decades ago. ence, or of seeing or hearing the deceased. A significant event in the life of my father, The next day, the patient’s husband Physical sensations might include mus- a physician, illustrates the principles of called the hospital to obtain the name of the cular weakness, fatigue, tightness in the empathy, attentiveness, and respect. That medical student who had stayed up all night. chest and throat, dry mouth, nausea, and event was his first encounter with the The family invited my father to the home for sensitivity to noise. There may be sleep death of a patient. the wake, grateful to him as the “doctor” who and appetite disturbances, social with- As a first-year medical student at Penn- had cared for their family member in her drawal, sighing, searching, and crying, sylvania State University in 1943, he had dying hours, and grateful for his sensitivity restless overactivity, reminiscing, and been designated on a Friday afternoon to work to the family’s emotional and spiritual needs. laughing, treasuring objects that belonged in the emergency room. Around 4:30 PM, a His participation in the end-of-life story of to the deceased, or avoiding such 25-year-old woman, the mother of two young this patient and her family would become a reminders.3 children, was brought in and assigned to him. foundation of healing for them in the after- However it proceeds, the grief pro- She was several hours into the sudden onset math; for my father, it was an unforgettable cess poses a challenge to human systems of respiratory distress of unknown cause. As lesson in the power of a caring professional. at each level—through personal, inter- my father began to take a careful history, he We live in a grief-saturated world. personal, family, and caregiver systems. could see that this woman’s life was ebbing More than 2 million individuals die in Inherent in this process is the demand away. He brought in the resident and called the United States each year. It is difficult for change and substantial potential for for the chief physician; no one knew what to estimate how many others are directly growth—and/or decline. Loss disrupts was happening except that her pericardial affected by these deaths, and it is even equilibrium, and subsequent readjust- sac was filled with fluid, which they aspi- more complex to estimate how many will ments are multifaceted and complex rated to no great effect. The hours passed and have compromised health due to bereave- involving somatic, psychological, social, at 3 AM, despite efforts of the staff, she con- ment. Healthcare institutions may fail to cultural, spiritual, and historical compo- tinued to decline. At that time in medicine, address the needs of the bereaved. nents. Practically speaking, this means there was nothing more that the hospital staff Although the primary responsibility of that besides somatic changes due to ill- could do for this woman. healthcare providers is to the patient, the ness, one must be aware of a patient’s My father stayed with her, though the well-being of the family and others close grief-associated symptoms. The impact of shifts came and went. In my father’s own to a dying person is also part of terminal disease or loss on total functioning of a words: illness. Even practitioners who perceive patient or family system must be con- these needs may have trouble addressing sidered. How is self-concept affected? I couldn’t leave her, and no one knew them when third-party payers refuse to Identity, expectations, and sense of the what was wrong except that her heart reimburse bereavement services. Grief future all may need adjustment. What and lung systems were all messed up. affects not only individuals and commu- is—or was—the role of the patient in the So in my very unprofessional and nities; but it is also a significant public family system? This role may change. naive way, I just sat and held her hand. I never left her—I couldn’t leave her. health issue of concern to employers, There may be a loss of roles, of accus- Her life was slipping away. She kept policy makers, healthcare providers, and tomed activities, capabilities, and per- 2 saying, ‘I’m going to die, doctor,’ and managed care administrators. sonal dignity. In a culture that strongly I kept telling her, ‘We’re going to do emphasizes health and youth, disease everything we can for you, and every Grief as a Natural Response and demise are isolating. time you have any pain or discomfort, Although grief can become prolonged Many people see and loss

ES34 • JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 Bruce • Helping With the Grieving Process as spiritually related. There may be a Kübler-Ross’s observations now who grieves can travel around and feeling of being punished or forgotten form the classically regarded five-step around the process before emerging, so by the Diety, or of being purified and paradigm for the grief process: denial, sustained care giving is needed rather strengthened. Since there is a strong con- anger, bargaining, , and accep- than viewing grief as a series of pro- nection between spirituality and well- tance. She described the five stages as gressive stages with a predictable and being, it is important to allow or provide “coping mechanisms” that people go orderly end.7 for spiritual exploration and support through to deal with extremely difficult The initial phase of their model, during grief. It is also important to ask situations.5 These stages were at times shock and disbelief, discards the term denial what personal history of losses provides overlapping or coexisting, but, in her with its pathologic connotations. Instead, the context or foundation for this one. model, they are progressive. In addition there is insight that the human organism What is the family context, community to these central stages, the model does what it needs to do to cope with context, or racial-ethnic context? What included stage-bridging mechanisms of reality. Body, mind, and soul adjust to “undigested” grief is there that will partial denial and preparatory grief. the distressful situation by closing down become a part of the matrix for this new Included in the stage were to protect and rebuild in small incre- experience? Freudian concepts of decathexis, or with- ments. Reality is set aside, in part, and Other contributing factors to the drawal of emotional energy from the lost allowed slow entry into the self-system. grief process include suddenness versus object, and recathexis, or reinvestment of In this stage, there is a strong, but adap- expectation of loss, causes and course of that energy. In regard to the dying tive, need to withdraw, to be numb and the illness, and whether there is a sense patient, this withdrawal signaled the end unresponsive.7 of hope and purpose through it all. Espe- of the struggle to sustain bodily life and During the second phase, searching cially difficult is “ambiguous loss,” essen- the investment of energy in letting go and yearning,7 a person will attempt to tially living with frozen grief, as in brain and moving on.5 undo or retract the distressful reality with injury, dementia, serious addiction, or Kübler-Ross further observed that thoughts such as “This couldn’t have mental illness. Since the person being “the one thing that usually persists happened!” “Why this?” “Why us?” lost is neither clearly absent nor clearly through all these stages is hope.... It’s this “Why now?” “If only...!” The is present, it can be difficult for survivors to glimpse of hope which maintains them angry, agitated, and frantic. know how to move through the grief.4 through days, weeks or months of suf- The third phase, disorganization and fering.”5 She defined hope as “the feeling despair, represents full penetration of the Major Models for Grief that all of this must have some meaning, distress, and of facing the loss.7 Here, Various models for the grief process have and will pay off eventually if they can one could hear statements such as “My been proposed and used over the past only endure it for a little while longer.”5 life is over. I just don’t care anymore. I half century as thanatology has devel- Interestingly, the patients that can’t go on.” There is depression, disor- oped as a field of study. Most notable Kübler-Ross interviewed showed the ganization, absentmindedness, and have been the works of Kübler-Ross5; greatest in those physicians apathy. These responses, normal signs Bowlby6 and Parkes7; Worden8; who allowed them to express and main- of separation distress in this phase of Wolfelt9,10; and Neimeyer.11 tain their hope, in whatever form.4 Even grief, should be supported and not con- with acceptance of a diagnosis of ter- fused with a pathologic state. Kübler-Ross’s Five-Step minal illness, one can hold hope of con- The final phase is that of rebuilding Paradigm for the Grief Process tinuing to live to the end in a meaningful, and healing, in which the grieving person Elisabeth Kübler-Ross, MD, psychiatrist zestful way, relating to life, and being a will begin restructuring and reorganizing and internationally known thanatologist, unique personality through the moment to proceed.7 One begins to take on the published her seminal study in 1969, of death. changes and move forward in life; the titled On Death and Dying.5 The cover to loss is no longer defined in terms of the the first edition included the explanatory Bowlby and Parkes’ self. Rather, the grieving one has a subtitle, “what the dying have to teach Four Phases of Grief renewed sense of identity, which goes doctors, nurses, clergy and their own British psychiatrists John Bowlby, MD, beyond—and is greater than—the loss. families.” The work was the result of a and Colin Murray Parkes, MD, collabo- The grieving person will have more seminar that began in 1965 at the Uni- rated on the grief process in the 1980s, energy and sociability, and an ability to versity of Chicago Billings Hospital, bringing together insights from Bowlby’s view his or her grief in a larger perspec- when four theological students “Attachment Theory”6 and Parkes’ tive. approached Kübler-Ross for assistance studies of human information pro- in a research project on “the crisis of cessing.7 Together they reformulated Worden’s Four Basic death in human life.” Together they Kübler-Ross’s five stages into four phases Tasks for Adapting to Loss determined that the best way to study of grief, and observed that these stages J. William Worden, PhD, psychothera- death and dying was to ask terminally ill were not always linear but could recycle pist and researcher in the field of ter- patients to be their teachers, through through recollection, or some triggering minal illness and suicide, holds academic observation and interview. experience or anniversary reaction. One appointments at Harvard Medical School

Bruce • Helping With the Grieving Process JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 • ES35 and the Rosemead Graduate School of philosophy. Rather than viewing grief Psychology in California. He is also co- as a disease state from which to seek principal investigator for Harvard’s Child Resources recovery, he sees the pain of loss as an Bereavement Study. His research and inherent part of life resulting from the clinical work spanning 30 years has cen- ability to give and receive . Since tered on life-threatening illness and life- Ⅵ www.adec.org everyone is changed forever by their grief threatening behavior. His text, Grief Coun- Association for Death Education journey, concepts like reestablishment, 8 and Counseling seling and Grief Therapy, grew out of this (an interdisciplinary organization recovery, and resolution are not adequate project and his own clinical practice. formed to assist professionals and to describe what needs to happen in grief. Worden views mourning—the adapta- lay people in the field of dying, One does not “get over it,” but learns to death, and bereavement) tion to loss—as involving four basic tasks, live with it and reconcile oneself to it. In the completion of which are essential for Ⅵ www.centerforloss.com Wolfelt’s grief process, one moves a person and/or family system to return Alan Wolfelt’s organization toward the pain in order to walk through to equilibrium and complete bereave- Ⅵ http://cancernet,nci.nih.gov it (vs work through it). ment by National Cancer Institute Wolfelt sees six central needs of grief Ⅺ accepting reality of the loss, (cf Worden’s four central tasks8) that are Ⅺ Ⅵ www.aarp.org experiencing the pain of grief, American Association of Retired more experiential than task-oriented, and Ⅺ adjusting to an environment in which Persons with a more relational, tribal, systemic the deceased is missing, and (has useful self-help information view of the self. Four are familiar: about grief) Ⅺ withdrawing emotional energy and Ⅺ to inwardly experience and outwardly investing it into another relationship. Ⅵ www.nhcpo.org express the reality of loss through These four undertakings need not National Hospice and Palliative mourning; Care Organization. follow a specific order; they can be con- Ⅺ to tolerate the pain of grief while current, cyclical, or overlapping, and the caring for oneself; grieving person will work on them with Ⅺ to convert the relationship with the Figure. Useful Web sites. effort until regaining balance. lost person from presence to memory Worden speaks of particular diffi- (relocation of the relationship in the heart culty with the fourth task. It is here that of love versus decathexis or withdrawal); grief most often remains unresolved, as that if we know what is wrong, we can and the mourner continues to hold onto a past fix it, Wolfelt’s approach is much more Ⅺ to develop a new self-identity based attachment rather than form new ones. In postmodern, that is, each person’s grief on life without the person who died, doing grief therapy within this model, it experience is unique and no predictable taking on new roles, and exploring pos- is important to facilitate emotional recon- or orderly stages exist. The mourner is itive aspects of oneself in the change. ceptualization of a lost love into memory the teacher, rather than the recipient of Added to the process are so that emotional space will be created another’s expertise; mourner and sup- Ⅺ to relate the experience of loss to a for new relationships. Worden’s expected porter go together on a journey of dis- context of meaning, telling a story about time frame for full resolution of grief is covery. the loss until it becomes “the story” that 1 to 2 years, a projected point where nat- Wolfelt’s approach is therefore much makes some sense of it all, teaches some ural sadness of having loved and lost will more experiential and narrative; he lesson, or provides some doorway to no longer have the initial wrenching teaches that caregivers to the bereaved continuance; and quality. If progress through these devel- should “companion,” rather than treat Ⅺ to develop an understanding, en- opmental tasks is arrested at some point, those in grief. In his words,9 during support system that will provide the grief experience will become intensi- a strengthening brace while healing takes fied such that the grieving person ‘Companioning’ is about honoring the place in the months and years ahead. becomes overwhelmed; a pathologic con- spirit, being curious, learning from These are fellow human beings who will dition then appears.8 others, walking alongside, being still, companion the mourner and encourage listening with the heart, bearing wit- self- whenever a normal ness to the struggles of others and Wolfelt’s “Companioning” resurgence of intense grief occurs.10 being present to their pain, respecting Approach to the Bereaved disorder and rather than Alan Wolfelt, PhD, a major voice in the imposing order and logic. Compan- Neimeyer’s Narrative and field of thanatology, is founder and ioning is about going to the wilder- Constructivist Approach director of the Center for Loss and Life ness of the soul with another human An important contribution to thanatology Transition in Ft Collins, Colo (Figure); he being; it is not about thinking you are comes from Robert A. Neimeyer, PhD, is known internationally as a grief edu- responsible for finding the way out. professor of psychology at the Univer- cator and care provider. sity of Memphis in Tennessee. A prolific Whereas previous models have “If you love, you will mourn,” is a author, theorist, and clinician in the fields emanated from the modern perspective foundational understanding in Wolfelt’s of psychology and bereavement, he has

ES36 • JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 Bruce • Helping With the Grieving Process conducted extensive research on the only surviving but also ultimately, it is who had less time to adjust to the new topics of death, grief, loss, and suicide hoped, thriving.11 reality. Bereaved parents and others suf- intervention. He is currently working to fering from traumatic or violent losses advance a more adequate theory of Recent Research were excluded from the study and likely grieving as a meaning-making process. It is interesting that in the present debate would express a different set of norms.13 As a narrative-constructivist, Neimeyer11 on the validity and applicability of var- approaches human experience from the ious grief and treatment models, a major Diagnosing Complicated Grief view that people co-construct reality study recently conducted by Maciejewski Prigerson et al14,15 propose a model for together, continually updating their per- et al at Yale (the Yale Bereavement diagnosing prolonged or complicated ception of it as they write and rewrite Study12) in New Haven, Conn, asked, grief in the presence of a diagnostic their life stories in the center of their What does typical grief look like? The cluster of at least 6 months’ duration, beliefs; developing an ongoing sense of study concluded that the bereaved do including symptoms of separation dis- identity, purpose and belonging. tend to report experiences in line with tress, traumatic loss, and shattered Neimeyer elucidates six key realities influ- the “Stage Theories” of Kübler-Ross, meaning. enced by death, derived from construc- Bowlby and Parkes, and Worden when Mardi Horowitz, MD, professor of tivist thought, namely: tracked during the first 24 months after psychiatry at the University of California Ⅵ Particulars of a loss can validate or a loss, with several notable distinctions. in San Francisco, and her colleagues16 invalidate one’s core assumptions about In particular, the study showed that not proposed a similar model, but one that how life should work, or they may depression, but yearning was the most requires 14 months postloss before a encompass a novel experience for which prominent negative emotion a mourner diagnosis can be made. Diagnostic cri- one has no framework of assimilation. experienced after a death. Acceptance teria from each model include specified We may try to interpret loss within our was the most common and steadily percentages of signs and symptoms own developed framework of beliefs, increasing indicator throughout the causing clinically significant impairment but may be forced to create a new under- length of the study, rather than defining in social, occupational, or other important standing of reality in order to proceed. a final stage of arrival. areas of functioning.17 Ⅵ Grief is idiosyncratic, both universal Further observations were that dis- Both diagnostic models are avail- and unique. As such, effective therapeutic belief decreased from a maximum at able online at www.redmh.org/research interventions will be client-led, with the 1 month postloss, yearning peaked at /specialized/grief.html. bereaved as the active locus of control 4 months, anger was utmost at 5 months, for proceeding. and depression was highest at 6 months Important Issues Ⅵ Grieving is active, affirming or recon- following the loss. Acceptance increased for Caregivers structing a personal world of meaning steadily throughout the 24 months post- The individual, intrapersonal experience that has been challenged or ruptured by loss observation period.12 of grief is similar across cultures,18 though loss. It is a period of decision making, A co-author of the Yale Bereave- bereavement practice can vary pro- practically and existentially, not a time of ment Study, Holly Prigerson, PhD, has foundly. A grief reaction on the anniver- passive waiting through a series of emo- been central in developing proposed cri- sary of a loss, for example, seems to be tional transitions or stages. teria for “prolonged or complicated grief part of the circadian, somatic nature of Ⅵ during grief are functional disorder” as a new diagnostic category to sorrow rather than purely culturally con- and useful guides. The bereaved must be included for publication in the Diag- ditioned. I observed this response in a reconstruct a world that restores a sem- nostic and Statistical Manual of Mental Dis- young child who had no coaching to blance of meaning, direction, and inter- orders Fifth Edition (DSM-V) now in devel- expect such a resurgence of grief at a par- pretability to life. Emotional states hold opment for publication in 2012. In the ticular time, and whose parents were something important for us to learn in Yale Bereavement Study, negative cog- surprised by the anniversary, as well. this process, and should not be viewed as nitive-emotional indicators for grief They had been out of the United States dysfunctional conditions to be extin- began to decline after 6 months, sup- without the possibility of contact with guished or overcome. porting Prigerson’s recommendation that their 6-year-old child for several weeks. Ⅵ The reconstruction of a grieving persistently severe, distressing, or dis- During that time, an important linking person’s identity is a social process, at abling signs of separation distress at more object, a little bear he and his mother had once individual and regulated by soci- than 6 months postloss be diagnostic of chosen together before the trip, had been etal and family norms. the disorder. However, more than 50% of taken from him by someone in a fright- Ⅵ Grieving individuals adapt to loss by the sample population for the study was ening and traumatizing way. restoring coherence to the narratives of older than 65 years, mostly older widows When the boy’s mother returned their lives, making sense of their own “with a fair amount of preparation for and the child told her some of what had great continuing story, putting the pieces their loved one’s death.” Those with happened, she sympathized with him of the shattered puzzle back together like knowledge of a patient’s diagnosis of ter- and together, they chose a bear as a sub- any trauma survivor, finding a way to minal illness for at least 6 months prior to stitute for the lost bear. The incident was fit what happened into a life that is not the death were more accepting than those forgotten until exactly a year after the

Bruce • Helping With the Grieving Process JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 • ES37 loss of the first bear. The child came to his resemble a traumatic stress response, and mother in tears of grief over the bear. He may respond to treatments recom- told her the traumatic details of the loss, mended for posttraumatic stress disorder which he had never mentioned before, (PSTD) or depression.20 but which had come into his conscious- Family caregivers and survivors will ness for review quite unexpectedly a year not be alone in experiencing the pain of later, with all its attendant . loss. Grief will impact health profes- The ways in which a person sionals caring for those who suffer and responds to—or expresses—grief feel- die. Jeffrey Kauffman, LCSW,21 special- ings are qualified by culture as well as izing in the treatment of grief and trauma, experience. A good question to ask in writes about the professional caregiver’s caregiving is “What is required or awareness of his or her own mortality: expected by the grieving person’s cul- ture in this situation?” One’s own denials and dissociations of Grief practices across cultures serve death anxiety in relation to oneself, an important purpose, and it is important may, in reaction to the grief of others, block empathy or open it up. Our own to honor them. Monica McGoldrick, PhD, grief is always there in some way in LCSW, director of The Multi-Cultural our every encounter with the grief of Family Institute of New Jersey, in High- others. It may be both an impediment land Park, has developed training on and a means of empathetic connection ethnic patterns for the medical school at the same time, but it is always there. curriculum. McGoldrick, co-editor of the For each of us, as we approach the text, in Ethnicity and Family Therapy,19 has work of supporting others in their grief posed these questions for cross-cultural © 2007 Dreamstime.com and facilitating the mourning process, sensitivity: we approach a place which is spiritu- Ⅵ Are certain types of death particu- end of an ambivalent or abusive rela- ally and psychologically very pow- larly traumatic for this sociocultural tionship, an individual may have trouble erful, both healing and dangerous. The caregiver should be prepared with self- group? with grief. Ⅵ awareness and an openness to the vul- What rituals are prescribed for man- Prolonged dying also places a great nerability of self and other and to the aging the dying process and aftermath? strain on caregivers, depleting their phys- great spiritual and psychological Ⅵ What beliefs exist regarding what ical and emotional resources and pre- wounds that occur in grief.21 happens after death? disposing them to illness on the rebound. Ⅵ What emotional expressions are Other questions about the circumstances Basic issues intrinsic to the helping appropriate in response to this loss? For of the death that should be considered in professions—which grief will activate— example, Puerto-Rican traditions such as assessing grief include: must be addressed. crying, screaming, and hysteria are Ⅵ Are substance abuse or other com- First, there is the reality of attach- common, expected, and even respectful pulsive behaviors present, or a history ment and loss for anyone who is empa- ways of mourning at a funeral. In con- of multiple or unexpressed losses? These thetic. A healthcare professional may say trast, an American family of British may be risk factors for complicated grief. inwardly, “You’ve engaged me. I’ve descent believes it is important not to Ⅵ Was there no choice about seeing the invested myself in you. Now you’re show grief in an outward display of emo- body? leaving.” tions, but to keep a “stiff upper lip.” In this Ⅵ Is litigation involved? Then, there can be the narcissistic latter case, it is deemed “responsible” to Ⅵ Does the survivor experience con- injury of, “My job was to heal you, but I keep personal problems to oneself, and suming guilt or blame? can’t, and that feels terrible.” Frustrated not be “a bother” to anyone. Caregivers Ⅵ Was the loss abrupt or traumatic or altruistic strivings may include, “I’m in unaccustomed to either of these two both? this business to give life and to help extremes could misinterpret and label a Research into traumatic loss indi- others, so my energies must go to the culturally normal response as “patho- cates that such grief can be prolonged, living, not the dying.” logic” in attempting to fix the problem.10 pervasive, and debilitating without indi- There may be personal issues that It will be helpful if caregivers know cating a psychiatric disorder.15 Grieving are brought to the surface, or a crisis of when to be watchful for signs of pro- survivors of trauma victims should be brought on by particular circum- longed or complicated grief. Perhaps the reassured that the intensity of their feel- stances: “This one is too close to home!” patient or survivor held unrealistic expec- ings is entirely normal and acceptable. or “Why this, God?” It may be a matter tations about life and death; maybe a According to recent studies, most of those of grief overload, as observed in health- support system was or is lacking. If the who grieve need only time and sympa- care professionals working in hospice or illness or manner of death is stigmatized thetic company. However, long-lasting emergency trauma situations: “Now this (eg, from AIDS), or if death marks the grief in cases of shocking loss can is just too much!”

ES38 • JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 Bruce • Helping With the Grieving Process Any of these natural responses with their other children about the reality. behind. Dying persons have of would lead healthcare professionals to The counselor invited Kendra’s parents to Ⅺ losing control do exactly what the patient the most begin to say some of the words they might Ⅺ loss of dignity and needs the least, that is, to withdraw say. They parents did this hypothetical role Ⅺ loss of self-determination emotionally and physically, become curt play with the counselor; eventually, they did Ⅺ ceasing to be or perfunctory, and abandon bedside use the thoughts they had rehearsed to shep- Ⅺ pain manner. What can one do? herd their family through Kendra’s death sev- Ⅺ being alone The following case scenario illus- eral days later. Different members of the hos- Ⅺ the unknown trates how grief counseling helped the pice team kept vigil with the family Responding to these concerns parents with three other children cope throughout the dying process. requires that physicians and caregivers during the terminal stage of one child’s The counselor stayed connected to the maintain an attitude of empathy, atten- cancer, her loss, and the bereavement family for 2 years after Kendra’s death for tiveness, and respect, as well as a will- process that followed the child’s death. bereavement counseling in the form of “grief ingness to take time, be present, and walks” in the beautiful, natural landscape listen. Nonverbal communication is Case Presentation near where the patient was born. In assessing important. Healthcare professionals A family of two parents and four children the parents’ coping strategies, it was clear should sit down and invite sharing: “You had been struggling valiantly for several years that physical activity—”being able to move may have some questions.... Tell me your with treatment of one of their children for when you just feel like running away”— thoughts on this matter.... I’d like to hear brain cancer. Kendra (not her real name) was would both facilitate discussion during the your concerns.... You must if an elementary school–aged child who, by walk. It was also needed as a relaxant to set you’re going to get well.” reason of an unrelated condition, had been the stage for the difficult emotional work of Ira Byock, MD, past president of the both heroically independent and needfully grief that occurred during the last segment of American Academy of Hospice and Pal- more dependent on her parents throughout each session. liative Medicine, has written a practical her young life. This situation set the stage and compassionate guide to Dying Well: for bitter irony at her prognosis of terminal Opening Discussion Peace and Possibilities at the End of Life.22 cancer and acute separation distress after her It is important for healthcare profes- The appendix contains many examples of death. sionals dealing with grief and loss to questions that family members or Kendra’s siblings each had their own explore their own “grief landscape”. patients may want to ask and insightful unique and special relationship with her. The They should ask themselves, responses through which the healthcare oncologists waited to determine the child’s Ⅵ What are my issues with loss at this professional can open up a helpful con- eligibility for hospice care until every pos- point in my life? versation. sible hope had been exhausted, as the parents Ⅵ What is my history with grief? would have desired and expected. Kendra Ⅵ What losses have impacted me, which What Do We Need was considered to be just a few days away still exert pressure on my ability to cope? During Grief? from death when she came on hospice ser- Ⅵ What does my belief system tell me Without a , patient, family, and vice. The parents—not wanting to upset about the meaning of suffering, of life, healthcare professionals share some of either Kendra or her siblings with anticipatory and of death? the same needs when faced with the grief grief—were distressed about whether and All this exploration can take time, process. Healthcare professionals need how to tell their other children the truth about but it is worthwhile to assess periodi- time alone and time with others to feel their sister’s critical status. A hospice bereave- cally, to observe and acknowledge losses, and understand their own losses. They ment counselor was called in as part of the pressures, and unreconciled grief in one’s need rest, , nourishment, and interdisciplinary team to assist them in coping life. In fact, it can be encouraging to look diversion to be replenished from the and decision making. back from a new perspective year by exhaustion of grief. They need a sense Because of the parents’ reluctance to year and see how things change. Those of security, , and hope in the future, speak of this coming crisis, the counselor sug- who develop a measure of comfort with gained by experiences of being cared for. gested that they would build trust and reduce life and death issues—and learn how to Healthcare professionals need that which their other children’s and panic if live with their own grief and losses— will give impetus and direction to life they would speak to them in a loving, con- will become more capable of adminis- when it seems to be without meaning. taining, age-appropriate, but genuine, manner tering effective, life-giving care, even to They need lightheartedness, simple plea- before Kendra began actively dying. The par- someone who is dying. Their person and sures, and humor, which provide bal- ents were unwilling to make this choice and presence will be able to instill confidence ance and relief from stress. Metcalf and expressed the fear that they would not be able and hope that is genuine and based in Flible23 provide a helpful resource along to handle the strong emotions that might reality. these lines. ensue. What are some of the major con- Finally, healthcare professionals can The counselor respected the parents’ cerns of consciously dying persons? benefit from access to the transcendent or choice but proposed that they think about Often, they have concern or even guilt spiritual realm of life. As Byock what it would be like if they were to speak regarding those whom they will leave observed22:

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ES40 • JAOA • Supplement 7 • Vol 107 • No 12 • December 2007 Bruce • Helping With the Grieving Process