Integrating palliative care into the pediatric cardiac intensive care unit

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Mithya Lewis-Newby

University of Washington, Seattle Children’s Hospital, USA

: J Nurs Patient Care

Abstract

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The past century has brought significant medical advancements in the care of children with critical heart disease; many children who are born with or develop heart disease can hope to live long healthy lives. However, despite these advancements, some children with critical heart disease will succumb to their disease and die in childhood. Some children may die after an acute course, sometimes within days of birth or diagnosis. Other children may live many years with chronic illness requiring repeated hospitalizations and cardiac interventions. Other children may live for months or years in an intensive care unit (ICU) setting, dependent on high-level life support technology and may die without ever leaving the ICU. To address the wide variety of needs of children with critical heart disease and their families, our institution has developed a holistic approach to integrating our hospital Palliative Care team into all stages of care. We have developed categories of patients who receive an automatic consultation from our Palliative Care team: parents of fetuses with high-risk congenital heart diagnoses, patients born with single ventricle anatomy, and patients requiring extracorporeal life support (ECLS) or tracheostomy. In addition, Palliative Care consults are often placed for children requiring cardiac transplantation, children who remain for an extended time in the cardiac ICU dependent on life-support technology without a clear path toward home discharge, and children who face particularly complex decision-making around goals of care. Goals of integrating specialty Palliative Care into the care of children with critical heart disease include exploration of individual family needs, values, and goals, support of life affirming desires in a medicalized environment, continuity of care throughout prolonged or repeat hospitalizations, patient advocacy, and decision-making support. Our institution has found the integration of Palliative Care into our cardiac ICU to improve the experience of patients, families, and clinicians alike.

Biography

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Mithya Lewis-Newby is a pediatric cardiac critical care specialist, attending at Seattle Children’s Hospital, University of Washington since 2008. Her scholarship is focused on the ethical and palliative care issues that arise in the care of critically ill children. She is currently the chair of the Seattle Children’s Hospital Ethics Committee.