Harriett Nelson1, Sandra Mott2, Monica E Kleinman3, Richard D Goldstein4. 1. Critical Care Transport Team, Boston, Massachusetts, USA. 2. Cardiovascular and Critical Care Programs, Boston, Massachusetts, USA. 3. Department of Critical Care Medicine, Boston Children's Hospital, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA. 4. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute and Boston Children's Hospital, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA. Electronic address: richard_goldstein@dfci.harvard.edu.
Abstract
CONTEXT: Pediatric palliative transports, the practice of transporting critically ill children home for end-of-life care including extubation, are an option for children requiring high levels of medical support at end of life. Little is known about the experience from the perspective of the children and families. OBJECTIVES: To understand parents' perspectives on the experience of pediatric palliative transports. METHODS: Open-ended interviews were conducted using a qualitative descriptive design. Each parent was asked to reflect on the process of bringing their child home to die. Conventional content analysis was used for data analysis. RESULTS: Nine parents participated. The decision to transport the child home was a process motivated by promises to the child or a conviction that it was the right thing to do. The parents were gratified by the attention to safety and detail involved, but the actual transport home was stressful to them. The arrival home was typically recounted as a celebration. Being home provided time with the child in the context of their family and contributed to their lives. Memories of the experience brought comfort and a sense of fulfillment. CONCLUSION: Each parent found the experience positive and meaningful. The child's experiences when alive, not events at the time of death, were remembered. All parents recommended palliative transports, emphasizing the importance of home and family, when desired. These interviews strongly suggest that palliative transports make a positive, important contribution to the care of at least some children facing end of life, and their families.
CONTEXT: Pediatric palliative transports, the practice of transporting critically ill children home for end-of-life care including extubation, are an option for children requiring high levels of medical support at end of life. Little is known about the experience from the perspective of the children and families. OBJECTIVES: To understand parents' perspectives on the experience of pediatric palliative transports. METHODS: Open-ended interviews were conducted using a qualitative descriptive design. Each parent was asked to reflect on the process of bringing their child home to die. Conventional content analysis was used for data analysis. RESULTS: Nine parents participated. The decision to transport the child home was a process motivated by promises to the child or a conviction that it was the right thing to do. The parents were gratified by the attention to safety and detail involved, but the actual transport home was stressful to them. The arrival home was typically recounted as a celebration. Being home provided time with the child in the context of their family and contributed to their lives. Memories of the experience brought comfort and a sense of fulfillment. CONCLUSION: Each parent found the experience positive and meaningful. The child's experiences when alive, not events at the time of death, were remembered. All parents recommended palliative transports, emphasizing the importance of home and family, when desired. These interviews strongly suggest that palliative transports make a positive, important contribution to the care of at least some children facing end of life, and their families.
Authors: Corina Noje; Meghan L Bernier; Philomena M Costabile; Bruce L Klein; Sapna R Kudchadkar Journal: Pediatr Crit Care Med Date: 2017-01 Impact factor: 3.624