Differences in Characteristics of Dying Children Who Receive and Do Not Receive Palliative Care
ABSTRACT OBJECTIVE:Comparing demographic and clinical characteristics associated with receipt of palliative care (PC) among children who died in children's hospitals to those who did not receive PC and understanding the trends in PC use.METHODS:This retrospective cohort study used the Pediatric Health Information System database. Children <18 years of age who died ≥5 days after admission to a Pediatric Health Information System hospital between January 1, 2001, and December 31, 2011 were included. Receipt of PC services was identified by the International Classification of Diseases, Ninth Revision code for PC. Diagnoses were grouped using major diagnostic codes. International Classification of Diseases codes and clinical transaction codes were used to evaluate all interventions.RESULTS:This study evaluated 24 342 children. Overall, 4% had coding for PC services. This increased from 1% to 8% over the study years. Increasing age was associated with greater receipt of PC. Children with the PC code had fewer median days in the hospital (17 vs 21), received fewer invasive interventions, and fewer died in the ICU (60% vs 80%). Receipt of PC also varied by major diagnostic codes, with the highest proportion found among children with neurologic disease.CONCLUSIONS:Most pediatric patients who died in a hospital did not have documented receipt of PC. Children receiving PC are different from those who do not in many ways, including receipt of fewer procedures. Receipt of PC has increased over time; however, it remains low, particularly among neonates and those with circulatory diseases.
Pediatrics in Review 08/2014; 35(8):318-26. DOI:10.1542/pir.35-8-318 · 0.82 Impact Factor
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ABSTRACT: Objective: This review highlights benefits that patients, families and clinicians can expect to realize when palliative care is intentionally incorporated into the PICU. Data Sources: We searched the MEDLINE database from inception to January 2014 for English-language articles using the terms "palliative care" or "end of life care" or "supportive care" and "pediatric intensive care." We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website. Study Selection: Two authors (physicians with experience in pediatric intensive care and palliative care) made final selections. Data Extraction: We critically reviewed the existing data and tools to identify strategies for incorporating palliative care into the PICU. Data Synthesis: The Improving Palliative Care in the ICU Advisory Board used data and experience to address key questions relating to: pain and symptom management, enhancing quality of life, communication and decision-making, length of stay, sites of care, and grief and bereavement. Conclusions: Palliative care should begin at the time of a potentially life-limiting diagnosis and continue throughout the disease trajectory, regardless of the expected outcome. Although the PICU is often used for short term postoperative stabilization, PICU clinicians also care for many chronically ill children with complex underlying conditions and others receiving intensive care for prolonged periods. Integrating palliative care delivery into the PICU is rapidly becoming the standard for high quality care of critically ill children. Interdisciplinary ICU staff can take advantage of the growing resources for continuing education in pediatric palliative care principles and interventions.Pediatric Critical Care Medicine 07/2014; 15(8). DOI:10.1097/PCC.0000000000000209 · 2.33 Impact Factor
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ABSTRACT: The definition of palliative care is the cornerstone of a medical subspecialty that plays a particular role for all who need it, for all who practice it, and increasingly for those who try to understand it. The difficulties around the definition and terminology arise from problems in separating it from other concepts such as supportive care, constructs such as "palliative care is only about dying", or, in children, the rather vague use of terms like life-threatening and life-limiting diseases. These weaknesses have been recognized and important steps have been taken. This review discusses current definitions as well as efforts to overcome their weaknesses and make the term palliative care-for both children and adults-more intelligible.Palliative Care: Research and Treatment 01/2013; 7:31-6. DOI:10.4137/PCRT.S12800