Supporting bereaved parents: practical steps in providing compassionate perinatal and neonatal end-of-life care. A North American perspective.
ABSTRACT Providing compassionate bereavement support challenges care-givers in perinatal medicine. A practical and consistent approach tailored to individual families may increase the care-giver's ability to relieve parental grief. This approach includes: (1) clear and consistent communication compassionately delivered; (2) shared decision-making; (3) physical and emotional support; and (4) follow-up medical, psychological and social care. Challenges to providing comprehensive end-of-life care include care-giver comfort, consistency of care, cultural and legal barriers, and lack of adequate training.
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ABSTRACT: Objective: In this study, we explored the providers' perspective of difficult conversations in neonatal critical care. Methods: Between 2008 and 2011, interprofessional neonatal providers voluntarily attended the Program to Enhance Relational and Communication Skills-NICU workshops at Boston Children's Hospital. We analyzed seventy-four participant narratives that described a difficult conversation in the NICU that was particularly challenging or satisfying. Results: Participants described memorable conversations that were exclusively challenging (n = 51), both challenging and satisfying (n = 22), and exclusively satisfying (n = 1). We identified five broad domains (Infant's Clinical Situation, Family Characteristics, Provider Characteristics, the Provider-Family Relationship, and Satisfying Elements) and several themes that further characterized the providers' perspectives. Conclusion: Understanding the practitioners' experience with difficult conversations may help staff to anticipate some challenges inherent in neonatal discussions and to design communication and relational learning educational efforts.
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ABSTRACT: In neonates, the course of illness is often unpredictable and symptom assessment is difficult. This is even truer at the end of life (EOL). Time to death can take minutes to days, and ongoing management of the infant is needed during the time between discontinuation of life-sustaining treatment and death to ensure that the infant remains free of pain and suffering. The symptoms experienced by neonates as they die, as well as best ways to treat those symptoms, are understudied. The purpose of this study was to examine symptoms exhibited by neonates at the EOL and the treatments used to manage those symptoms as documented in the medical record during the last 24 hours of life.Advances in Neonatal Care 10/2014; 15(1). DOI:10.1097/ANC.0000000000000132
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ABSTRACT: Perinatal palliative care (PPC) is a developing model of care aimed at providing supportive services to families anticipating fetal or neonatal demise. This study measured barriers physicians and advance practice nurses report in providing and referring patients to PPC. A cross-sectional survey design using the Perinatal Palliative Care Perceptions and Barriers Scale © was administered using a Web-based tool. Recruitment was completed via email and flyer invitations and list serves. Physicians (n = 66) and advance practice nurses (n = 146) participated. T-test and Mann-Whitney U were used to examine differences in clinician-reported barriers to PPC. Physicians and nurses differ significantly in the barriers they report. Nurses expressed more obstacles at the healthcare systems level reporting difficulty in their ability to garner interdisciplinary support and gain administrative backing. Physicians are more confident in their ability to counsel patients than nurses. Members of both disciplines express similar feelings of distress and helplessness when caring for families expecting a fetal or neonatal demise. They also report a lack of societal support and understanding about PPC. Cultivating an environment of collaboration and interdisciplinary communication can benefit both caregivers and patients. Nurses have an opportunity to lead and promote PPC endeavors through participating in advantageous partnerships and research. Both disciplines may benefit from interventions directed at increasing their comfort in caring for patients in a palliative setting through targeted education and supportive staff services.MCN The American Journal of Maternal/Child Nursing 01/2015; 40(1):44-50. DOI:10.1097/NMC.0000000000000093 · 0.84 Impact Factor