PREPARING PARENTS OF PEDIATRIC PALLIATIVE CARE PATIENTS FOR THE END-OF-LIFE-PROCESS: A REVIEW OF INTERNATIONAL PEDIATRIC END-OF-LIFE-CARE GUIDELINES

Abstract

End of life care is part of palliative care and is provided for individuals at their last days of life. The main focus in end-of-life care is on symptom control and management to allow patients to die peacefully and comfortably, while taking into account the psychological status of patients and their caregivers. Pediatric end-of-life-care is a form of end-of-life-care provided to patients 18 years of age and younger. At end-of-life, there are many decisions that parents are forced to take that has to do with artificial nutrition and hydration, code status, and treating new infections. Often those decisions are uninformed. Without specific guidance from the interdisciplinary teams composed of oncologists, palliative care teams, and registered nurses caring for the pediatric patients, parents will not be able to take the right decisions that is in their children’s best interest. At AUBMC, pediatric hematology/oncology nurses are not equipped with the appropriate knowledge to provide care for end-of-life patients and there are no guidelines for end-of-life care. Hence, this project is meant to help nurses prepare parents to deal with decisions related to the end-of-life process. Method: Content analysis of three international guidelines related to end-of-life care was conducted including: The European Society for Medical Oncology (ESMO) guidelines, the National Institute for health and Care Excellence (NICE) guidelines, and the American Academy of Pediatrics (AAP) guidelines. The content of the three international guidelines were analyzed and tabulated for the purpose of developing an evidence-based, customized one that fits the Lebanese culture. Results: Six constructs were extrapolated from the three guidelines that will help improve the quality of end-of-life-care, to include: (1) communicating with the child and parents regarding disease prognosis, (2) integrating parents and the child in the decision-making process, (3) identifying the signs of a dying child, (4) designing an individualized advanced plan of care, (5) developing a treatment plan at the end-of-life, and (6) managing symptoms. Conclusion: Adapting the developed guidelines will increase the nurse’s knowledge with regards to end-of-life-care that would eventually empower parents to take decisions at end-of-life that has to do with their child’s code status, artificial nutrition and hydration, and many more, that would have a positive impact on the child’s quality of care at end-of-life.