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.

Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering.

OBJECTIVE: To implement and evaluate a quality improvement program of interdisciplinary palliative care education and support intended to increase the competence, confidence and ability to manage personal grief of health care professionals caring for dying children. SETTING: A children's hospital in an urban academic medical center. PARTICIPANTS: Pediatric health care professionals of all disciplines caring for children with life-threatening conditions. INTERVENTIONS: We initiated a quality improvement program of professional education and support consisting of four interdisciplinary activities facilitated by the pediatric palliative care team. The Compassionate Care Network (CCN) provides an open forum for interdisciplinary networking and education. Palliative Care Rounds (PCR) provides education through monthly case-based discussions on selected units. Patient Care Conferences (PCC) facilitate communication and care planning for selected patients with palliative care needs on any unit in the children's center. Bereavement Debriefing Sessions (BDS) offer health professionals the opportunity to manage their responses to grief after a patient's death. EVALUATION MEASURES: From February 2002 to September 2003, we prospectively tracked the frequency of sessions conducted, the number and discipline of attendees, the age and diagnosis of patients discussed, and themes raised at each session. Participants evaluated each session. RESULTS: One hundred one sessions were conducted (PCR = 31, PCC = 23, CCN = 9, BDS = 38) for 950 participants (PCR = 312, PCC = 188, CCN = 193, BDS = 257). All units and disciplines participated in one or more sessions. Evaluations report that sessions are informative and will influence future professional practice. CONCLUSIONS: A program of interdisciplinary interventions can successfully educate and support health care professionals in providing palliative and end-of-life care for children. This program model can be applied in diverse pediatric health care settings.