Until the last breath: exploring the concept of hope for parents and health care professionals during a child's serious illness.

OBJECTIVE: To investigate the concept of hope for families and pediatric health care professionals during a child's serious illness. DESIGN: Eight focus groups. SETTING: Academic pediatric medical center. PARTICIPANTS: Bereaved parents, pediatricians, pediatric residents, and nurses (N = 39). Intervention Participants were asked standardized questions related to their definition of hope, its role in medical decisions, and the benefits and detriments of hope in focus group sessions. MAIN OUTCOME MEASURES: We identified attributes of participants' concepts of hope using qualitative analysis of audio-taped sessions. RESULTS: While all participants identified common elements in their definition of hope, parents identified their role as bearers of hope; it was a cornerstone of decision making. Health care professionals tended to view hope as related to a positive outcome. Some physicians reported difficulty in maintaining hope in the face of prognostic data; others acknowledged the importance of the family's hope. Nurses identified particular challenges around parents' decisions to continue treatment when it prolonged the child's suffering. All participants noted the changing nature of hope and its implications for care. CONCLUSIONS: The tension between maintaining hope and accepting the reality of the prognosis may lessen when acknowledging that parents see their role as bearers of hope. Supporting families around the changing nature of hope may allow health care professionals to partner with parents while maintaining honest communication.

Improving psychological and psychiatric aspects of palliative care: the national consensus project and the national quality forum preferred practices for palliative and hospice care.

As patients with terminal disease enter into the final stage of their illness, psychiatric symptoms and psychological responses to the disease contribute to overall suffering of both patient and family. Until recently, no nationally accepted guidelines or practices had been established to support assessment and management of this type of suffering. In 2007, the National Quality Forum published A National Framework and Preferred Practices for Palliative and Hospice Care Quality that included a list of preferred practices for assessing and treating symptoms of psychiatric illness, anticipatory grief and psychologic distress prior to death, and bereavement after the death, of the patient. While specialized care may be provided to patient and families in the context of advanced disease, all clinicians involved in palliative and end-of-life care are responsible for having a basic understanding of effectively managing psychologic and psychiatric aspects of this care. Evidence from current literature supports these best practices.