Helping Staff Deal with Difficult Deaths

Transcription

1 The College of New Rochelle Digital CNR Faculty Publications 2016 Helping Staff Deal with Difficult Deaths Kenneth J. Doka The College of New Rochelle, kdoka@cnr.edu Follow this and additional works at: Part of the Gerontology Commons Recommended Citation Doka, K. J. (2016). Helping Staff Deal with Difficult Deaths. In K. J. Doka & A. S. Tucci (Eds.), Managing Conflict, Finding Meaning: Supporting Families at Life s End (pp ). Washington, DC: Hospice Foundation of America. This Book Chapter is brought to you for free and open access by Digital CNR. It has been accepted for inclusion in Faculty Publications by an authorized administrator of Digital CNR. For more information, please contact lfazzino@cnr.edu.

2 L I V I N G WITH GRIEF 6 MANAGING CONFLICT FINDING MEANING Supporting Families at Life's End D i ffi I HOSPICE FOUNDATION OF AMERICA Edited by Kenneth J. Doka and Amy S. Tu

3 CHAPTER9 Helping Staff Deal with Difficult Deaths Kenneth J. Doka CASE DESCRIPTION Johnny was an 8-year-old boy who had been treated for osteogenic sarcoma in the pediatric unit of a major oncology hospital for the past two years. During this time, Johnny had multiple hospitalizations and was one of the hospital's most frequent patients. He had been there for the diagnosis, amputation of his left arm, and finally chemotherapy and other surgeries, especially after the cancer metastasized to his lungs. The staff on the pediatric unit grew to like Johnny's parents, Andrea and Darren, perceiving them as grateful and non-demanding, yet vulnerable. Most important, over the years, Johnny's personality ingratiated him with the staff. Johnny was a smiling, somewhat mischievous child who responded to his illness with both forbearance and humor. Once, in the waiting room at the hospital, an older woman approached Johnny and Andrea, noting his empty shirt sleeve after his amputation. She exclaimed, "Little boy, I'm so sorry you've lost your arm." Johnny responded by looking surprised and, with mock worry, explained to his mom that he had it before he left. Johnny loved chocolate-chip cookies. The hospital staff would frequently buy or make cookies for him, so there was always a selection of cookies in his room. Whenever he was hospitalized, his room became an impromptu break room, which further enhanced connections among Johnny, his parents, and staff. The initial prognosis, even after the first metastases, was guarded but favorable. However, continued metastases in the second lung presaged a poor prognosis. About two years after the initial diagnosis, Johnny's condition deteriorated rapidly following an infection and 69

4 KENNETH J. DOKA died. Staff were surprised by the swiftness of his decline and death. During Johnny's final hospitalization, Andrea and Darren rejected extraordinary measures, believing they would unnecessarily prolong his suffering. Some staff had difficulty accepting that decision. STATEMENT OF PROBLEM Since Johnny's death, morale on the unit has plummeted. Staff seem reluctant to attach to new patients, and absenteeism has increased. Staff members often tear up when Johnny is mentioned. ANALYSIS In their seminal research, Glaser and Strauss (1968) defined sentimental order as "the intangible but very real patterning of mood and sentiment that characteristically exists on each ward" (p. 14). In Johnnys case, a number of factors contributed to disrupting the sentimental order. Glaser and Strauss emphasize that staffs ability to predict the timing of a death is a critical factor in maintaining the sentimental order. Not only was there expectation that Johnny would survive the infection, but his death followed an unexpectedly rapid decline. Other factors contributed to making this case especially difficult. The death of a child is inherently complicated for both parents and medical staff (Rando, 1993). In this case, staff were grieving not only the loss of a special child, Johnny, but the loss of a relationship with his parents. Many of the staff were around the same age as Andrea and Darren, and had children the same age as Johnny, thus easily identified with the parents. The staff also felt a sense of unmet goals. For some, these goals were medical in nature, focused on treating Johnnys infection, which might have prolonged his life or, at least, avoided his rapid and unpredictable decline and death. For some staff, these unmet goals were highly idiosyncratic and personal. For example, one nurse had promised to bake Johnny a batch of chocolate-chip cookies based on a new recipe, but by her next shift, Johnny had already died. All of these unmet goals medical and personal are factors identified as intensifying and complicating health professionals' grieving process (Glaser & Strauss, 1968; Papadatou, 2000). GOALS OF COUNSELING The hospital must restore the sentimental order in the ward following Johnny's death. Staff need to find ways to process their grief 70

5 HELPING STAFF DEAL WITH DIFFICULT DEATHS and explore the realities inherent in their work that may be intensifying their grief reactions. INTERVENTION STRATEGY The first intervention was a discussion, led by the ethics committee, about Andrea and Darren's decision not to take any extraordinary measures and to allow natural death. As the discussion progressed, though, it became clear that some members of the staff were experiencing unresolved grief and guilt over not being given the opportunity to provide more intensive medical interventions in an attempt to save Johnny. As a result of the initial ethics consult, the hospital decided to do a series of other interventions. One was unplanned but quite helpful. Johnny's parents wanted to do something to acknowledge the staff s care and support so they offered to host a pizza party between shifts. The party was soothing; it allowed the parents to show appreciation but also gave staff an opportunity to share memories of Johnny and interact with Andrea and Darren again. The event gave them all one final interaction apart from the crisis of dying and Johnny's funeral, which many staff members had attended. The social worker and chaplain arranged a more formal series of sessions for staff from all shifts to process their grief reactions. This step, both in group and individual settings, provided validation that grief is a natural reaction to loss. This reminder can be critical, as staff sometimes disenfranchise grief reactions to a patients death as unbecoming to a professional (Doka, 2002; Papadatou, 2000); validating such a loss is helpful (Doka, 2014; Katz & Johnson, 2006; Vachon, 1987). In these sessions, staff also reviewed self-help strategies they've used to find respite from the intense emotional demands inherent in caring for children with cancer. The sessions also gave them a chance to explore personal philosophies about their roles. Hospital staff often see their primary role as that of curing disease and saving lives. With such a perspective, losing a patient, particularly one who was very special, can be seen as failure and therefore upset the sentimental order. The chaplain and social worker led a discussion utilizing Weisman's notion of least possible contribution (1984). This approach encouraged staff to find solace in the little things that they were able to do for the patient rather than focus on what they were unable to do. They found the concept very helpful and began to identify multiple acts of kindness as 71

6 KENNETH J. DOKA well as expert medical care that offered comfort and support to Johnny and his family throughout his repeated hospitalizations. Also during these sessions, the chaplain led a discussion of how each staff member's own spirituality assisted him or her in acknowledging and coping with the unfairness of life. This issue was a major concern when discussing Johnny's death; there was always a sense that the loss of any child was unfair, but Johnny's personality and resilience added a special poignancy to his death, especially with the unexpected nature and speed of his final decline. The staff had a memorial service every three months commemorating the losses during that quarter but they decided to have a special memorial service for Johnny. It was well attended by staff on all shifts, and included music, reflections, and readings, including one from his favorite book Where the Wild Things Are, After the service, there was a reception with milk and chocolate-chip cookies. CONCLUSIONS AND REFLECTIONS Some deaths can be difficult for health professionals, especially those considered out-of-order (such as the death of a child or young individual), sudden and unpredictable, or those that do not follow a projected trajectory (Glaser & Strauss, 1968). Such deaths challenge one's assumptions of the world and make one feel an increased vulnerability. In addition, such losses can serve as reminders of past losses, or create fear of future losses (Papadatou, 2000). Johnny's death reminded staff that even children who face illness with optimism are not immune to long-term challenges or death. Healthcare professionals face other stressors as well. Many have to deal with organizational stress, continually being asked to do more with limited time and resources. These professionals, especially in ICUs, hospices, or palliative care settings, experience cumulative losses. There may be systemic stress arising from the perception, either real or imagined, that patient care has lower priority than financial efficiency. And healthcare professionals will certainly experience personal losses that they may be grieving in addition to the losses they encounter in their work life. Kastenbaum (1988) states that health professionals experience vicarious grief; they are likely to have a more realistic concept of the prognosis and grieve the eventual death of the patient, even as the patient and family retain hope. Another complicating factor is moral distress. Jameton (1993) defined moral distress as the inner conflicts experienced by healthcare 72

7 HELPING STAFF DEAL WITH DIFFICULT DEATHS professionals when they experience personal, professional, spiritual, or ethical dilemmas in the provision of patient care. For example, in Johnnys case, many staff members felt uncomfortable with his parents' decision to allow a natural death. When deaths are difficult, it is critical both to acknowledge the loss and to offer individual and organizational strategies to cope with that loss. In this case, the hospital did very well in offering support to staff. On an individual level, this means validating and acknowledging that healthcare professionals can grieve a difficult death. Papadatou (2000) stressed that healthcare professionals need to oscillate between experiencing and containing grief. Vachon (1987) emphasized that a critical aspect of lifestyle management was the development and implementation of "respite rules." The staff were given many strategies for stress management. The sessions also underlined the fact that health professionals need to acknowledge the limitations of their professional role, noting concepts such as Weisman's (1984) least possible contribution or Weininger and Kearney's (2011) concept of exquisite empathy, meaning a caregiver with self-awareness and effective boundaries, yet who can remain sensitively attuned, warm, and deeply present in caring for patients. Sessions also noted that health professionals were well served by a spiritual/philosophical perspective that allowed them to cope with the continued unfairness of life. However, Vachon (1987) and Papatadou (2000) noted that effective organizations provide ongoing support for staff. The hospital where Johnny was treated modeled that well. There were formal policies, procedures and programs SLich as time off to attend funerals, debriefmgs after difficult deaths, and support groups. The unit offered both education and occasional rituals during which staff could come together to mourn their collective losses. Some losses are inevitably more difficult than others. Yet, it is still easier when they are borne collectively. Kenneth J. Doha, PhD, MDiv, is a professor of gerontology at the Graduate School of The College of New Rochelle and senior consultant to Hospice Foundation of America. Dr. Doha serves as editor of HFA's Living with Grief book series, its Journeys newsletter, and numerous other books and publications. Dr. Doka has served as a panelist on HFA's Living with Grief video programs for 22 years. He is a past president of the Association for Death Education and Counseling (ADEC) and 73

8 KENNETH J. DOKA received the Special Contributions Award in the field of Death Education from the Association for Death Education and Counseling. He is a member and past chair of the International Work Group on Death, Dying and Bereavement. In 2006, Dr. Doha was grandfathered in as a mental health counselor under New York's first state licensure of counselors. Dr. Doha is an ordained Lutheran minister. REFERENCES Doka, K. J. (Ed.). (2002). Disenfranchised grief: New directions, challenges, and strategies for practice. Champaign, IL: Research Press. Doka, K. J. (2104). Caring for the carer: The lessons of research. Progress in Palliative Care, 22 (3), Glaser, B. & Strauss, A. (1968). Time for dying. Chicago, IL: Aldine Publishing Company. Jameton, A. (1993). Dilemmas of moral distress: Moral responsibility and nursing practice. AWHONNS Clinical Issues in Perinatal & Womens Health Nursing, 4(4), Kastenbaum, R. (1988). Vicarious grief as an intergenerational phenomenon. Death Studies, 12, Katz, R., & Johnson T. (Eds.). (2006). When professionals weep: Emotional and counter-transference responses in end-of-life care. New York, NY: Routledge. Papadatou, D. (2000). A proposed model of health professionals' grieving process. Omega: Journal of Death and Dying, 41, Rando, T. A. (1993). The treatment of complicated mourning. Champaign, IL: Research Press. Vachon, M. (1987). Occupational stress in the care of the critically ill, the dying, and the bereaved. New York, NY: Hemisphere. Weininger, R. & Kearney, M. (2011). Revisiting empathic engagement: Countering compassion fatigue with "exquisite empathy." In I. Renzenbrink (Ed.), Caregiver stress and staff support in illness, dying, and bereavement (pp ). Oxford, UK: Oxford University Press. Weisman, A. (1984). The coping capacity: On the nature of being mortal. New York, NY: Human Sciences Press. 74