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Review article


Josip Grbac ; Theology of Rijeka, Dislocated Studies of Catholic Faculty of Theology, University of Zagreb, Rijeka, Croatia
Iva Štajduhar ; Theology of Rijeka, Dislocated Studies of Catholic Faculty of Theology, University of Zagreb, Rijeka, Croatia

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page 269-290

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Pediatric palliative care is a separate but closely related entity to adult palliative care, combining the key palliative care beliefs with a pediatric focus. It seeks to enhance the quality of life of the child in the face of an ultimately terminal condition. Palliative treatments focus on the relief of symptoms (e.g. pain, dyspnea) and conditions (e.g. loneliness) that cause distress and detract from the child’s enjoyment of life. It also seeks to ensure that bereaved families remain functional and intact. Pediatric palliative care is the active total care of the child's body, mind and spirit, which also involves giving support to the family. Palliative care for children is offered for a wide range of life limiting conditions, which differ from adult diseases. Many of these are rare and familial. The diagnosis influences the type of care that a child and family will need, and four broad groups of conditions have been identified. Palliative care may be needed from infancy and for many years for some children, while others may not need it until they are older and only for a short time.
Also the transition from aggressive treatments aimed at curing the condition or prolonging good quality life to palliative care may not be clear. Assessing symptoms is an essential step in developing a plan of management. There are formal assessment tools for assessing severity of pain in children that are appropriate for different ages and developmental levels. Pediatric palliative care is best delivered by a multidisciplinary team involved in the care of children with life-limiting illnesses. Palliative care may begin at diagnosis, and for children with slowly progressive illnesses, palliative care may last for years. Children’s palliative care is provided through statutory services such as health, social services and education and voluntary services such as hospices and other charitable organizations. From an organizational standpoint, there are theoretically four possible solutions for children with life-limiting or life-threatening disease, two domestic and two institutional. Institutionalized pediatric palliative care is provided in structures specifically for incurable children (hospices or nursing homes dedicated to patients with specific diseases) or in hospital departments dealing with acute conditions. In the vast majority of cases the home is the best place to provide such care, but for cultural, affective, educational and organizational reasons, pediatric patients rarely benefit from such an approach. Pediatric palliative care can be provided at home, where patients are cared for by a team from the hospital, or from the territorial health care services, or a combination of the two (integrated home care schemes). None of these solutions is ideal; in practice, they all have their pros and cons.


pediatric palliative care, children's hospice, organizational issues, models of care for sick children

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