Pediatric Palliative Care Moving Forward: Empathy, Competence, Quality, and the Need for Systematic Change

Abstract

It is not how much we give, but how much love we put into giving.Mother Teresa 847 A S A PEDIATRIC INTERN I was involved in the care of a child with a progressive neurodegenerative disorder. Miriam was 14 years old. She was cognitively impaired and could not move, eat, or breathe on her own. She suffered from multiple daily seizures despite the use of a variety of antiseizure medications. She received all of her nutritional support artificially via a gastrostomy tube and was hospitalized in the intensive care unit on a breathing machine after an episode of aspiration pneumonia. Miriam's mother, Mrs. Gonzalez, agonized over the suffering of her child. During the period of hospitalization we gave Mrs. Gonzalez daily updates on her daughter's progress and results of the most recent laboratory tests. We talked about her seizure management, developmental delay, and respiratory complications. Mrs. Gonzalez would sit by Miriam's bedside grabbing one of her daughter's little fingers and would stare at her vulnerable face and body now violated by endotracheal and nasogastric tubes, catheters, and dressings. Mrs. Gonzalez appeared in shock. She was motionless, had nothing to say, a hopeless expression on her face. One day Miriam died in the intensive care unit despite our best efforts. We moved on to our next patient and never saw or heard from Mrs. Gonzalez again. The experience made me feel empty and powerless; things did not make sense. Many times I have wondered about this anguished woman and her fragile child and the things we could have said or done to bring them comfort. As a team, we were a group of compassionate doctors and nurses but somehow we were unable to translate our compassion into practices that were more beneficial for Miriam, her mother and the rest of their family.Recalling this story makes me feel sad. Miriam and her mother suffered tremendously throughout their ordeal. My coworkers in the intensive care unit felt depressed and there was an overwhelming sense of failure among us. Mostly, we responded by going about our business without acknowledging Miriam's suffering and death and her mother's excruciatingly difficult and tragic experience. We pretended to be at ease with our care and attempted to ignore our grief and profound sense of meaninglessness. Our ability to provide palliative care for patients like Miriam continues to improve but I wonder how we ever got to a state in which addressing suffering and quality of life were not high on the priority list of our caring agenda. At what point in the evolution of our noble profession did we lose the perspective that curing and comforting the sick were equally important priorities? How did we come to practice medicine as if emotional wellbeing, meaningful relationships, faith, hope and communication about death and dying were somehow less important for our patients and families than other, perhaps more tangible, elements of the illness experience? Why, as a system of care,

Development, Feasibility, and Acceptability of the Family/Adolescent-Centered (FACE) Advance Care Planning Intervention for Adolescents with HIV

“…48 Research in this area has been inhibited by the anxiety-provoking and sad nature of the topic. 49 Consistent with previous research, the results of this study demonstrate the positive contribution of conversations about EOL care, providing a model for therapeutic benefit to families who want help with ACP. 50,51 Contrary to our hypotheses, controls had higher negative ratings than intervention adolescents.…”

Challenging issues in pediatric oncology

“…111,112 Integration of palliative care into the ongoing care of children with cancer may be achieved by facilitating access to hospice and palliative care services early in the illness trajectory, promoting education, and developing policies and procedures that place greater emphasis on comfort and quality of life, particularly for patients with disseminated or advanced-stage disease. 113 In this regard, palliative care may even improve life expectancy for some patients with incurable cancer. 114 Health care providers involved in the care of children with cancer should establish the prognosis, negotiate goals, guide patients and/or their parents in the process of making difficult medical decisions, provide comfort, enhance quality of life, promote care coordination and continuity, optimize comfort at the end of life, and attend to the needs of bereaved family members (Box 1).…”

Reporting of pediatric palliative care: A systematic review and quantitative analysis of research publications in palliative care journals

“…[212325–273132344151545862717278798289919394101102111115116] The relative reporting prevalence for the four categories is provided in Figure 5.…”

“…Of the 27 articles on administration, there were 15 original articles[212358717278798294101102111115116] and 12 review articles. [252631323441515462899193] The comparison of article types between four categories of pediatric palliative care articles is provided in Figure 6.…”