Medscape article on health care professionals and grieving the loss of a child. NOTE: Only the first two sections are included: to view the entire article with Web enhancements, go to: http://www.medscape.com/viewarticle/484135 [you will need to freeregister on Medscape] Understanding Grief: A Component of Neonatal Palliative Care Tricia L. Romesberg, MSN, CNNP Journal of Hospice and Palliative Nursing 6(3):161-170, 2004. ) 2004 Lippincott Williams & Wilkins Posted 08/02/2004 Abstract and Introduction AbstractThe death of an infant is devastating, and the grief that surrounds the loss is a journey. Healthcare professionals often struggle to accept that death is inevitable and families often struggle to maintain hope against all odds. Understanding grief and offering bereavement support are key components to providing beneficent neonatal palliative care. IntroductionTechnological advances have provided extended longevity for many patients, which frequently results in a prolonged dying process.[1] The ramifications of this situation are poignantly stated in the following quotation: > My hope is that it won't be the epitaph of our generation that people will > say: Here was a community which developed the most amazing, dazzling fields > of science and yet proved themselves so indifferent or incompetent, that they > didn't address the serious social and ethical consequences of what they were > up to.[2](p674) Although death in old age is much more common in the United States than death in childhood, approximately half of all childhood deaths occur during infancy. The death of a child is often regarded as the most painful, stressful, and enduring bereavement experience.[3,4] As parents are confronted with the grief following the loss of a baby, they also face the difficult tasks of giving meaning to a very short life, assigning an identity to who this person was and would have been, and redefining their own identities as parents.[5] Bereavement support is considered an integral part of palliative care and serves to support families before, during, and after the death of an infant.[6] Consequently, healthcare professionals must be prepared to assist families throughout the grieving process and accept the transition from the role of hero to the role of witness.[7] It has been said that "Our care [as nurses] is life-changing, even when life is lost."[8](p35) Review of Literature Perceptions of Death Obershaw suggested that our society considers death to be "weird, unbelievable, and in bad taste"[9](p17): > The death of a loved one forces us to change, so death must be a mistake. > People aren't supposed to die, especially people we love. At least, not until > they've reached a ripe old age, had what we suppose to be a full life, and > most importantly, outlived us. Maybe we just don't want to face death because > we are afraid of grief. Maybe we fear grief because we don't know how to work > through it. Maybe if we knew how to work through our grief, we could accept > the reality of death.[9](p19) "Death is like a mysterious stranger at a costume ball, whose mask conceals the face beneath."[10](p30) An expectation that the assumed goal of medical care is to cure, has led unintentionally to healthcare providers denying that death may be the ultimate outcome for some patients.[11] Instead of viewing the death of a patient as a failure, it may be understood as "letting death" instead of "taking life."[12](p13) "We are a nation that has forgotten how to die, forgotten how to grieve, and is in danger of losing our ability to care for the dying."[12](p13)Viewing and Touching the Body Historically, in many communities, viewing the dead body of a loved one was a common and expected ritual that served as the first step toward adaptation to the loss.[13] More recently, however, it has become more common for family members to refuse the opportunity to view the deceased or provide aftercare for the body. There may be an increased risk for survivors to experience complicated grieving when viewing is either not possible or not chosen.[13] In 1975, Lewis wrote: "Bereaved parents should be encouraged to look at, and if possible touch or hold their dead baby..." to "...successfully facilitate normal mourning processes."[14](pp619-620) According to the Institute of Medicine, the consensus today is to give families the opportunity to hold their dead baby, as families who lack this opportunity may later have regrets.[15]The Dying Neonate The majority of neonatal conditions requiring end-of-life care include extreme prematurity, lethal anomalies (eg, trisomy 13, trisomy 18, and anencephaly), and situations requiring continuing and aggressive care that is considered to be more burdensome than beneficial (eg, severe intraventricular hemorrhage and hypoxic ischemic encephalopathy).[16] The Institute of Medicine defines neonate as "a child from birth through four weeks of age."[15](p32) Two thirds of all infant deaths occur in the neonatal period.[15] Reasons for neonatal palliative care consultations may include organization of home hospice, facilitation of do not resuscitate (DNR) orders and comfort measures, and grief support.[17] Six factors that make the death of a baby especially difficult include the narcissistic nature of a pregnancy-related death, the self-blame and sense of failure, the lack of concrete memories, the lack of anticipation, the prospective nature of the grief, and the lack of social understanding.[5]The Experience of Grief Following Neonatal Loss According to the Institute of Medicine's report on pediatric palliative care, three central themes are present when parents experience the death of a child.[3] They include the loss of the sense of personal competence and power, the loss of a part of the self, and the loss of a valued person whose characteristics were part of the family system. By following the journals of several women who experienced the death of a baby, Keyser also identified seven themes: (a) grief reactions, including emotional aspects, physical sensations, and behavioral expressions; (b) changes in the self-image of the griever; (c) challenges to belief systems; (d) the personhood of the baby and their place in the family; (e) desire for a subsequent pregnancy; (f) reaching a place in the family; and (g) the personal meaning of the loss experience.[5](p229) The Mothers in Support and Sympathy (MISS) Foundation offers support for parents who have experienced the death of a child; meetings are facilitated by parents who have also had this experience.[18] A mother whose twin boys died in the newborn intensive care unit (NICU) shared her concerns during a group discussion at a MISS meeting. She desperately wanted to know when she could expect some relief from her grief. The room was eerily quiet as she waited for an answer. No one could answer her question because, as the bereaved know, the process of grief is so very individual and may last a lifetime. Although the intensity of grief typically lessens over time, memories may revive feelings of grief for many years after the loss.[19] Parents often say the grief "gets different, it doesn't get better"[15](p556) and suggest words such as "reconciliation and reconstitution" instead of "recovery and resolution."[3](p557) Grief is a journey, with no necessary endpoint. Healthcare professionals striving to provide beneficent and end-of-life care should be prepared to share in the grief, loss, and fear experienced by families.[15,20] The repetitive emotional strain, in addition to reminders of one's own mortality, puts healthcare professionals at risk for experiencing compassion fatigue and burnout.[21,22] Disenfranchised grief may be experienced by healthcare professionals following the loss of a patient, or many patients, over time. Disenfranchised grief refers to the hidden grief often downplayed in the clinical setting.[21] Papadatou reported that the grief experienced by health-care professionals is an ongoing fluctuation between experiencing and avoiding grief reactions, which is "necessary, adaptive, and healthy" (Figure 1).[23](p64) ******