Palliative and hospice pediatric care
Background. Pediatric palliative and/or hospice care is both a philosophy and an organized method for delivering individualized care to children with life-threatening conditions. This care focuses on enhancing quality of life of the child and family, preventing and/or minimizing suffering, optimizing function, and providing opportunities for personal and spiritual growth. In the United States, approximately 44,000 pediatric deaths are registered each year. Many of these children die with a serious health condition and yet, are never enrolled in hospice care. In fact, less than 10 % of children receive hospice care at end of life. The aim of this study is to attract the attention of the society (and the medical community) to the need to create a sufficient number of services (centres) for palliative and hospice care for children, as well as giving an example of the work of the department of mobile hospice for children in the Western Ukrainian Specialized Children’s Medical Centre. Results. The Western Ukrainian Specialized Children’s Medical Centre has been caring for incurably ill children at home for last 6 years. All such patients were treated at the anesthesiology and intensive care department, then (when their state was improved, however, they still needed medical care) they were discharged. Our doctors and nurses trained parents to care of seriously ill children at home: children with severe congenital malformations, severe organic injuries of the central nervous system, progressive neurological disease, cancer, genetic disorders (Werdnig-Hoffmann disease, Edwards syndrome, etc.). The main criteria for our cooperation with families of sick children were life without pain and other severe symptoms, help to this family, attention and respect, an individual approach. In January 2017, due to the activity and with the help of the society, partnership cooperation, we, in the conditions of limited resources, created the department “Mobile Hospice for Children” at the Western Ukrainian Specialized Children’s Medical Centre (Lviv, Ukraine). Today, there are 26 children from different parts of Lviv region. Fourteen patients are breathing through the tracheostomy tube, and a half of them are mechanically ventilated in synchronous intermittent mandatory ventilation + pressure support ventilation mode. Eight of our patients are fed via gastrostomy tube. Our medical centre was the first in Ukraine, where we began to use this method of feeding in children during palliative care. However, every year in Lviv region, we have approximately 40–50 children, who need palliative care. We hope that “Mobile Hospice for Children” would provide the implementation of a multidisciplinary approach to palliative care in children. Conclusions. Palliative and hospice care involves a multidisciplinary approach to the treatment of children with an incurable illness and limited life expectation. The aim of this care is to improve the quality of life of children with severe diseases, as well as to support their families.
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