Patterns of End-of-Life Care in Children with Advanced Heart Disease (747)

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Patterns of End-of-Life Care in Children with Advanced Heart Disease (747) Emily Morell, BA, Children’s Hospital Boston, Boston, MA. Henry Cheng, MD, Children’s Hos- pital Boston, Boston, MA. Mark Scheurer, MD, Children’s Hospital Boston, Boston, MA. Leslie Smoot, MD, Harvard Medical and Children’s Hospital Boston, Boston, MA. Joanne Wolfe, MD MPH, Dana-Farber Cancer Institute, Boston, MA. Dorothy Beke, MS RN CPNP, Children’s Hospital Boston, Boston, MA. Elizabeth Blume, MD, Children’s Hospital Boston, Boston, MA. (All speakers have disclosed no relevant finan- cial relationships.) Objectives 1. Increase awareness of the importance of end- of-life care specifically for the pediatric car- diac disease population. 2. Increase utilization of end-of-life care prac- tices for children with advanced heart disease. 3. Extract baseline characteristics of children dy- ing of advanced heart disease in order to carry out prospective studies and interven- tions at home institutions. Background. Despite significant advances in the care and treatment of children with advanced heart disease, a small percentage of children die, and little is known about their end-of-life experience. Research objectives. To describe patterns of care of patients with advanced heart disease who ex- perience in-hospital deaths. Methods. All patients < 21 years who suffered in- hospital deaths at a single institution from Janu- ary 2007eJuly 2009 were included (n ¼ 79). Medical records review included patient demo- graphics, disease characteristics, types of sup- port, and modes of death. Results. Median age at death was 6 months (1 daye20 years), while median length of last hospi- tal stay was 22 days (1e193). Seventy-four percent of the patients had complex congenital heart dis- ease, and 20% had known genetic diagnoses. Nearly 40% of patients were from out of state, and 4% were international. The median lifetime number of catheterizations and surgeries were two (0-59) and 4 (0-18), respectively. At end-of- life, children had tracheostomies (2), gastro- stomy tubes (13), and peritoneal drains (16). Within the last 24 hours of life, 85% of patients were mechanically ventilated, 86% were on ino- tropic support, and nearly 30% were on mechanical circulatory support. Just over 60% of patients had evidence of end organ failure at time of death (42% neurological, 44% renal, 50% pulmonary, 10% hepatic); 50% of cases in- volved multi-organ failure. More than half (58%) of patients were completely sedated, and most (97%) received analgesics. Regarding mode of death, 22 patients (28%) died during re- suscitation, 42 (53%) had interventions with- drawn, and five (6%) patients died receiving comfort care. Aim. This study describes patterns of care of pa- tients with advanced heart disease who experi- ence in-hospital deaths. Conclusion. Although overall survival of chil- dren with heart disease continues to improve, children who die experience a high burden of care including chronic hospitalization, repeated interventions and frequent use of advanced sup- portive technologies. Implications for research, policy, or practice. Further research from the perspective of chil- dren and their families would help to better un- derstand their end-of-life care needs. A High-Dose Continuous Haloperidol Infusion Successfully Controlled Intractable Terminal Delirium (748) Ann Marie Navar-Boggan, MD PhD, Duke Uni- versity Medical Center, Durham, NC. Jennifer Gentry, MSN APRN BC ACHPN FPCN, Duke University Hospital, Durham, NC. Anthony Gal- anos, MD, Duke Medical Center, Durham, NC. (All speakers have disclosed no relevant finan- cial relationships.) Objectives 1. Consider a continuous infusion of haloperi- dol in cases of intractable terminal delirium. 2. Learn the dosing and indication for continuous haloperidol infusion for management of intrac- table delirium or agitation at the end of life. 3. Learn about the safety and tolerability of a continuous haloperidol infusion. Background. Haloperidol infusions have been successfully used to treat delirium in the pallia- tive and critical care setting at dosages up to 600 mg/day. Case description. A 68-year-old female with met- astatic hepatobiliary cancer was admitted with al- tered mental status and severe agitation. Further evaluation revealed probable leptomeningeal carcinomatosis and no reversible causes for her Vol. 41 No. 1 January 2011 301 Schedule with Abstracts

Transcript of Patterns of End-of-Life Care in Children with Advanced Heart Disease (747)

Page 1: Patterns of End-of-Life Care in Children with Advanced Heart Disease (747)

Vol. 41 No. 1 January 2011 301Schedule with Abstracts

Patterns of End-of-Life Care in Childrenwith Advanced Heart Disease (747)Emily Morell, BA, Children’s Hospital Boston,Boston, MA. Henry Cheng, MD, Children’s Hos-pital Boston, Boston, MA. Mark Scheurer, MD,Children’s Hospital Boston, Boston, MA. LeslieSmoot, MD, Harvard Medical and Children’sHospital Boston, Boston, MA. Joanne Wolfe,MD MPH, Dana-Farber Cancer Institute, Boston,MA. Dorothy Beke, MS RN CPNP, Children’sHospital Boston, Boston, MA. Elizabeth Blume,MD, Children’s Hospital Boston, Boston, MA.(All speakers have disclosed no relevant finan-cial relationships.)

Objectives1. Increase awareness of the importance of end-

of-life care specifically for the pediatric car-diac disease population.

2. Increase utilization of end-of-life care prac-tices for children with advanced heart disease.

3. Extract baseline characteristics of children dy-ing of advanced heart disease in order tocarry out prospective studies and interven-tions at home institutions.

Background. Despite significant advances in thecare and treatment of children with advancedheart disease, a small percentage of childrendie, and little is known about their end-of-lifeexperience.Research objectives. To describe patterns of careof patients with advanced heart disease who ex-perience in-hospital deaths.Methods. All patients < 21 years who suffered in-hospital deaths at a single institution from Janu-ary 2007eJuly 2009 were included (n ¼ 79).Medical records review included patient demo-graphics, disease characteristics, types of sup-port, and modes of death.Results. Median age at death was 6 months (1daye20 years), while median length of last hospi-tal stay was 22 days (1e193). Seventy-four percentof the patients had complex congenital heart dis-ease, and 20% had known genetic diagnoses.Nearly 40% of patients were from out of state,and 4% were international. The median lifetimenumber of catheterizations and surgeries weretwo (0-59) and 4 (0-18), respectively. At end-of-life, children had tracheostomies (2), gastro-stomy tubes (13), and peritoneal drains (16).Within the last 24 hours of life, 85% of patientswere mechanically ventilated, 86% were on ino-tropic support, and nearly 30% were on

mechanical circulatory support. Just over 60%of patients had evidence of end organ failure attime of death (42% neurological, 44% renal,50% pulmonary, 10% hepatic); 50% of cases in-volved multi-organ failure. More than half(58%) of patients were completely sedated, andmost (97%) received analgesics. Regardingmode of death, 22 patients (28%) died during re-suscitation, 42 (53%) had interventions with-drawn, and five (6%) patients died receivingcomfort care.Aim. This study describes patterns of care of pa-tients with advanced heart disease who experi-ence in-hospital deaths.Conclusion. Although overall survival of chil-dren with heart disease continues to improve,children who die experience a high burden ofcare including chronic hospitalization, repeatedinterventions and frequent use of advanced sup-portive technologies.Implications for research, policy, or practice.Further research from the perspective of chil-dren and their families would help to better un-derstand their end-of-life care needs.

A High-Dose Continuous HaloperidolInfusion Successfully Controlled IntractableTerminal Delirium (748)Ann Marie Navar-Boggan, MD PhD, Duke Uni-versity Medical Center, Durham, NC. JenniferGentry, MSN APRN BC ACHPN FPCN, DukeUniversity Hospital, Durham, NC. Anthony Gal-anos, MD, Duke Medical Center, Durham, NC.(All speakers have disclosed no relevant finan-cial relationships.)

Objectives1. Consider a continuous infusion of haloperi-

dol in cases of intractable terminal delirium.2. Learn the dosing and indication for continuous

haloperidol infusion formanagement of intrac-table delirium or agitation at the end of life.

3. Learn about the safety and tolerability ofa continuous haloperidol infusion.

Background. Haloperidol infusions have beensuccessfully used to treat delirium in the pallia-tive and critical care setting at dosages up to600 mg/day.Case description. A 68-year-old female with met-astatic hepatobiliary cancer was admitted with al-tered mental status and severe agitation. Furtherevaluation revealed probable leptomeningealcarcinomatosis and no reversible causes for her