THE JOURNAL OF PEDIATRICS
www.jpeds.com
University of Maryland School of Medicine Baltimore, Maryland Reprint requests: Cynthia F. Bearer, MD, PhD, Division of Neonatology, Department of Pediatrics, University of Maryland School of Medicine, 110 S. Paca St., 8th floor Room 8-N-165, Baltimore, MD 21201. E-mail: cbearer@ peds.umaryland.edu
References 1. AAP. Pediatrics 2008; Newborn Screening Authoring Committee. Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes—Implications for the System. http://pediatrics.aappu blications.org/content/121/1/192.full.html. Accessed October 24, 2014. 2. USDHHS Recommended Uniform Screening Panel. http://www.hrsa. gov/advisorycommittees/mchbadvisory/heritabledisorders/recommended panel/index.html. Accessed October 24, 2014. 3. ACOG Committee Opinion 2012. Opioid Abuse, Dependence, and Addiction in Pregnancy. http://www.acog.org/-/media/CommitteeOpinions/Committee-on-Health-Care-for-Underserved Women/co524. pdf?dmc=1&ts=20141024T1325197786. Accessed October 24, 2014. 4. Wexelblatt SL, Ward LP, Torok K, Tisdale E, Meinzen-Derr JK, Greenberg JM. Universal maternal drug testing in a high-prevalence region of prescription opiate abuse. J Pediatr 2015;166:582-6. 5. Gifford AE, Farkas KJ, Jackson LW, Molteno CD, Jacobson JL, Jacobson SW, et al. Assessment of benefits of a universal screen for maternal alcohol use during pregnancy. Birth Defects Res A Clin Mol Teratol 2010;88:838-46. 6. Bearer CF, Santiago LM, O’Riordan MA, Buck K, Lee SC, Singer LT. Fatty acid ethyl esters: quantitative biomarkers for maternal alcohol consumption. J Pediatr 2005;146:824-30. 7. Braun JM, Daniels JL, Poole C, Olshan AF, Hornung R, Bernert JT, et al. A prospective cohort study of biomarkers of prenatal tobacco smoke exposure: the correlation between serum and meconium and their association with infant birth weight. Environ Health 2010;9:53.
Vol. 166, No. 3 8. Butler Walker J, Houseman J, Seddon L, McMullen E, Tofflemire K, Mills C, et al. Maternal and umbilical cord blood levels of mercury, lead, cadmium, and essential trace elements in Arctic Canada. Environ Health 2006;100:295-318. 9. Al-Saleh I, Shinwari N, Mashhour A, Mohamed Gel D, Rabah A. Heavy metals (lead, cadmium and mercury) in maternal, cord blood and placenta of healthy women. Int J Hyg Environ Health 2011;214:79-101 (Epub 2010 Nov 18). 10. Ostrea EM Jr, Reyes A, Villanueva-Uy E, Pacifico R, Benitez B, Ramos E, et al. Fetal exposure to propoxur and abnormal child neurodevelopment at 2 years of age. Neurotoxicology 2012;33:669-75 (Epub 2011 Dec 1). 11. Center for Reproductive Rights 2000. Punishing Women for their Behavior During Pregnancy. Briefing Report. http://reproductive rights.org/sites/default/files/documents/pub_bp_punishingwomen.pdf. Accessed October 24, 2014. 12. Kolder VEB, Gallagher J, Parsons MT. Court-ordered obstetrical interventions. N Engl J Med 1987;316:1192-6. 13. ACOG Committee Opinion number 321, November 2005. Maternal Decision Making, Ethics, and the Law. http://www.acog.org/Resources-AndPublications/Committee-Opinions/Committee-on-Ethics/Maternal-Deci sion-Making-Ethics-and-the-Law. Accessed October 24, 2014. 14. Bessa MA, Mitsuhiro SS, Chalem E, Barros MM, Guinsburg R, Laranjeira R. Under-reporting of use of cocaine and marijuana during the third trimester of gestation among pregnant adolescents. Addict Behav 2010;35:266-9. 15. Jos PH, Marshal MF, Perlmutter M. The Charleston policy on cocaine use during pregnancy: a cautionary tale. J Law Med Ethics 1995;23:120-8. 16. Hans SL. Demographic and psychosocial characteristics of substanceabusing pregnant women. Clin Perinatol 1999;26:55-74. 17. Chasnoff IJ, Landress HJ, Barrett ME. The prevalence of illicit drug or alcohol use during pregnancy and discrepancies in mandatory reporting in Pinellas County, Florida. N Engl J Med 1990;322:1202-6. 18. Kocherlakota P. Neonatal abstinence syndrome. J Pediatr 2014;134:547-61. 19. Lester BM, ElSohly M, Wright LL, Verter J, Bauer CR, Shankaran S, et al. The maternal lifestyle study: drug use by meconium toxicology and maternal self-report. J Pediatr 2001;107:309-17.
Are We Doing Right by Dying Children?
I
n this issue of The Journal, Ragsdale et al present the first interventions provided. It is of concern, therefore, that 26% available large scale overview of clinical practice in providing of patients in the authors’ analysis were not exposed to any opioids and sedation at end-of-life for children who die in opioid or sedative in the days prior to their death. The authors the hospital.1 Previously published data on this important appropriately indicate that their lack of clinical data precludes topic is sparse, mostly based on experiences at single instituany conclusions about the adequacy or inadequacy of treattions with small sample sizes. In contrast, ment. They hypothesize that some portion See related article, p 587 Ragsdale et al utilized large administrative of these children died suddenly of unexdata sources to analyze information from 37 459 children dying pected causes, precluding assessment of the need for pain at 430 hospitals across the US. Retrospective analyses of such and symptom management. A separate population who would large population-level data sets have many limitations but serve be very unlikely to receive opioids or sedatives prior to death is the important purpose of generating new hypotheses and honthe cohort of children with brain death. Burns et al recently ing research questions for future studies. published a prospective case series of the epidemiology of Dying children have a high symptom burden in the last deaths in the pediatric intensive care unit (PICU) at five US week of life regardless of their underlying disease process,2 teaching hospitals, 16% of whom were declared brain dead.3 and inadequately treated symptoms are highly distressing to As these patients had lost all brain function, they were also unthe child, parents, and caregivers. The most prevalent sympable to perceive or experience pain or any other uncomfortable toms at end-of-life are pain and dyspnea, and thus opioids and sedatives are among the most important pharmacologic The author declares no conflicts of interest.
PICU
Pediatric intensive care unit
0022-3476//$ - see front matter. Copyright ª 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpeds.2014.11.034
524
EDITORIALS
March 2015 symptom, and would thus have no indication for analgesia or sedation. Interestingly, mode of death for the remainder of patients in the study by Burns et al tended to fall into 1 of 2 profiles: children who died within 1 week of admission (57%), which included the majority of those who died after failed cardiopulmonary resuscitation (14% of deaths), and patients who died beyond 1 week length-of-stay in the PICU, who were more likely to die following the limitation or withdrawal of life-sustaining treatment (70% of deaths).3 The study by Burns et al only addresses those deaths occurring in the PICU, but as these continue to represent the majority of children who die in the hospital, their data, in combination with the work of Ragsdale et al, highlight the need for more rigorous evaluation of pediatric in-hospital end-of-life care. Other authors have identified common barriers to adequate palliation in children, including insufficient provider skills in assessing pediatric pain (especially in nonverbal children), inadequate provider knowledge of analgesic options, patient/family fear of addiction or side effects such as respiratory depression, and inability of patient or family to acknowledge and accept the progression of disease that increased pain and distress often signifies.4,5 Future studies should specifically assess for these barriers and identify potential changes in education and practice to address them. One of the most promising trends in this regard is the development of pediatric palliative care and the growing recognition of the need for early integration of palliative care for children with life-limiting illness (ie, before the acute terminal phase). It is interesting that in the study population of Ragsdale et al, patients dying at children’s hospitals were more likely to receive opioid and sedative medication in their last days of life. Although, as the authors postulated, this could be because children’s hospitals are simply more proficient and comfortable in using opioids and sedatives in the pediatric population, it might also relate to the presence of a specialized pediatric palliative care team. Perhaps the most troubling finding of Ragsdale et al was that black children were about 20% less likely than white children to receive opioids and/or sedatives during their final days. It is difficult to acknowledge that this sort of inequity exists within the medical profession, within pediatrics, and especially at end-of-life. Yet, Ragsdale et al reference 2 other studies demonstrating similar disparities in pediatric oncology and hospice care. Although further research is needed to elucidate the origins and perpetuating factors of these differences, the gap demonstrated in the analysis by
Ragsdale et al is reason enough for humble reflection on potential biases and prejudices embedded within Western medical culture. There is much work still to do to optimize end-of-life care for children. Understanding trends and variations in practice is a beginning, and the information presented by Ragsdale et al is a welcome contribution to the literature. As pediatric palliative care continues to grow and mature as a specialty, more patients are spending their last days at home with hospice support, especially children with chronic complex conditions, and the adequacy of symptom management for these patients will need to be separately assessed. Ongoing special attention must be paid to patients dying in the hospital, as these patients will continue to have complex symptom management needs, will be more likely to undergo aggressive treatments, and will have complicated needs related to medical decision-making. It will become increasingly important for hospitals to support the development of multidisciplinary pediatric palliative care teams that can address these issues. n Sabrina F. Derrington, MD Division of Critical Care Medicine Northwestern University Feinberg School of Medicine Ann and Robert H. Lurie Children’s Hospital Chicago, Illinois Reprint requests: Sabrina F. Derrington, MD, Division of Critical Care Medicine, Northwestern University Feinberg School of Medicine, Ann and Robert H. Lurie Children’s Hospital, 225 E. Chicago Ave, Box 73, Chicago, IL 60611. E-mail: [email protected]
References 1. Ragsdale L, Zhong W, Morrison W, Munson D, Kang TI, Dai D, et al. Pediatric exposure to opioid and sedation medications during terminal hospitalizations in the United States, 2007-2011. J Pediatr 2015;166: 587-93. 2. Zernikow B, Michel E, Craig F, Anderson BJ. Pediatric palliative care: use of opioids for the management of pain. Pediatr Drugs 2009;11:129-51. 3. Burns JP, Sellers DE, Meyer EC, Lewis-Newby M, Truog RD. Epidemiology of death in the PICU at five US teaching hospitals. Crit Care Med 2014;42:2101-8. 4. Weidner NJ, Plantz DM. Ethical considerations in the management of analgesia in terminally ill pediatric patients. J Pain Symptom Manage 2014;48:998-1003. 5. Friebert S. Pain management for children with cancer at the end of life: beginning steps toward a standard of care. Pediatr Blood Cancer 2009; 52:749-50.
525
www.jpeds.com
University of Maryland School of Medicine Baltimore, Maryland Reprint requests: Cynthia F. Bearer, MD, PhD, Division of Neonatology, Department of Pediatrics, University of Maryland School of Medicine, 110 S. Paca St., 8th floor Room 8-N-165, Baltimore, MD 21201. E-mail: cbearer@ peds.umaryland.edu
References 1. AAP. Pediatrics 2008; Newborn Screening Authoring Committee. Newborn Screening Expands: Recommendations for Pediatricians and Medical Homes—Implications for the System. http://pediatrics.aappu blications.org/content/121/1/192.full.html. Accessed October 24, 2014. 2. USDHHS Recommended Uniform Screening Panel. http://www.hrsa. gov/advisorycommittees/mchbadvisory/heritabledisorders/recommended panel/index.html. Accessed October 24, 2014. 3. ACOG Committee Opinion 2012. Opioid Abuse, Dependence, and Addiction in Pregnancy. http://www.acog.org/-/media/CommitteeOpinions/Committee-on-Health-Care-for-Underserved Women/co524. pdf?dmc=1&ts=20141024T1325197786. Accessed October 24, 2014. 4. Wexelblatt SL, Ward LP, Torok K, Tisdale E, Meinzen-Derr JK, Greenberg JM. Universal maternal drug testing in a high-prevalence region of prescription opiate abuse. J Pediatr 2015;166:582-6. 5. Gifford AE, Farkas KJ, Jackson LW, Molteno CD, Jacobson JL, Jacobson SW, et al. Assessment of benefits of a universal screen for maternal alcohol use during pregnancy. Birth Defects Res A Clin Mol Teratol 2010;88:838-46. 6. Bearer CF, Santiago LM, O’Riordan MA, Buck K, Lee SC, Singer LT. Fatty acid ethyl esters: quantitative biomarkers for maternal alcohol consumption. J Pediatr 2005;146:824-30. 7. Braun JM, Daniels JL, Poole C, Olshan AF, Hornung R, Bernert JT, et al. A prospective cohort study of biomarkers of prenatal tobacco smoke exposure: the correlation between serum and meconium and their association with infant birth weight. Environ Health 2010;9:53.
Vol. 166, No. 3 8. Butler Walker J, Houseman J, Seddon L, McMullen E, Tofflemire K, Mills C, et al. Maternal and umbilical cord blood levels of mercury, lead, cadmium, and essential trace elements in Arctic Canada. Environ Health 2006;100:295-318. 9. Al-Saleh I, Shinwari N, Mashhour A, Mohamed Gel D, Rabah A. Heavy metals (lead, cadmium and mercury) in maternal, cord blood and placenta of healthy women. Int J Hyg Environ Health 2011;214:79-101 (Epub 2010 Nov 18). 10. Ostrea EM Jr, Reyes A, Villanueva-Uy E, Pacifico R, Benitez B, Ramos E, et al. Fetal exposure to propoxur and abnormal child neurodevelopment at 2 years of age. Neurotoxicology 2012;33:669-75 (Epub 2011 Dec 1). 11. Center for Reproductive Rights 2000. Punishing Women for their Behavior During Pregnancy. Briefing Report. http://reproductive rights.org/sites/default/files/documents/pub_bp_punishingwomen.pdf. Accessed October 24, 2014. 12. Kolder VEB, Gallagher J, Parsons MT. Court-ordered obstetrical interventions. N Engl J Med 1987;316:1192-6. 13. ACOG Committee Opinion number 321, November 2005. Maternal Decision Making, Ethics, and the Law. http://www.acog.org/Resources-AndPublications/Committee-Opinions/Committee-on-Ethics/Maternal-Deci sion-Making-Ethics-and-the-Law. Accessed October 24, 2014. 14. Bessa MA, Mitsuhiro SS, Chalem E, Barros MM, Guinsburg R, Laranjeira R. Under-reporting of use of cocaine and marijuana during the third trimester of gestation among pregnant adolescents. Addict Behav 2010;35:266-9. 15. Jos PH, Marshal MF, Perlmutter M. The Charleston policy on cocaine use during pregnancy: a cautionary tale. J Law Med Ethics 1995;23:120-8. 16. Hans SL. Demographic and psychosocial characteristics of substanceabusing pregnant women. Clin Perinatol 1999;26:55-74. 17. Chasnoff IJ, Landress HJ, Barrett ME. The prevalence of illicit drug or alcohol use during pregnancy and discrepancies in mandatory reporting in Pinellas County, Florida. N Engl J Med 1990;322:1202-6. 18. Kocherlakota P. Neonatal abstinence syndrome. J Pediatr 2014;134:547-61. 19. Lester BM, ElSohly M, Wright LL, Verter J, Bauer CR, Shankaran S, et al. The maternal lifestyle study: drug use by meconium toxicology and maternal self-report. J Pediatr 2001;107:309-17.
Are We Doing Right by Dying Children?
I
n this issue of The Journal, Ragsdale et al present the first interventions provided. It is of concern, therefore, that 26% available large scale overview of clinical practice in providing of patients in the authors’ analysis were not exposed to any opioids and sedation at end-of-life for children who die in opioid or sedative in the days prior to their death. The authors the hospital.1 Previously published data on this important appropriately indicate that their lack of clinical data precludes topic is sparse, mostly based on experiences at single instituany conclusions about the adequacy or inadequacy of treattions with small sample sizes. In contrast, ment. They hypothesize that some portion See related article, p 587 Ragsdale et al utilized large administrative of these children died suddenly of unexdata sources to analyze information from 37 459 children dying pected causes, precluding assessment of the need for pain at 430 hospitals across the US. Retrospective analyses of such and symptom management. A separate population who would large population-level data sets have many limitations but serve be very unlikely to receive opioids or sedatives prior to death is the important purpose of generating new hypotheses and honthe cohort of children with brain death. Burns et al recently ing research questions for future studies. published a prospective case series of the epidemiology of Dying children have a high symptom burden in the last deaths in the pediatric intensive care unit (PICU) at five US week of life regardless of their underlying disease process,2 teaching hospitals, 16% of whom were declared brain dead.3 and inadequately treated symptoms are highly distressing to As these patients had lost all brain function, they were also unthe child, parents, and caregivers. The most prevalent sympable to perceive or experience pain or any other uncomfortable toms at end-of-life are pain and dyspnea, and thus opioids and sedatives are among the most important pharmacologic The author declares no conflicts of interest.
PICU
Pediatric intensive care unit
0022-3476//$ - see front matter. Copyright ª 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpeds.2014.11.034
524
EDITORIALS
March 2015 symptom, and would thus have no indication for analgesia or sedation. Interestingly, mode of death for the remainder of patients in the study by Burns et al tended to fall into 1 of 2 profiles: children who died within 1 week of admission (57%), which included the majority of those who died after failed cardiopulmonary resuscitation (14% of deaths), and patients who died beyond 1 week length-of-stay in the PICU, who were more likely to die following the limitation or withdrawal of life-sustaining treatment (70% of deaths).3 The study by Burns et al only addresses those deaths occurring in the PICU, but as these continue to represent the majority of children who die in the hospital, their data, in combination with the work of Ragsdale et al, highlight the need for more rigorous evaluation of pediatric in-hospital end-of-life care. Other authors have identified common barriers to adequate palliation in children, including insufficient provider skills in assessing pediatric pain (especially in nonverbal children), inadequate provider knowledge of analgesic options, patient/family fear of addiction or side effects such as respiratory depression, and inability of patient or family to acknowledge and accept the progression of disease that increased pain and distress often signifies.4,5 Future studies should specifically assess for these barriers and identify potential changes in education and practice to address them. One of the most promising trends in this regard is the development of pediatric palliative care and the growing recognition of the need for early integration of palliative care for children with life-limiting illness (ie, before the acute terminal phase). It is interesting that in the study population of Ragsdale et al, patients dying at children’s hospitals were more likely to receive opioid and sedative medication in their last days of life. Although, as the authors postulated, this could be because children’s hospitals are simply more proficient and comfortable in using opioids and sedatives in the pediatric population, it might also relate to the presence of a specialized pediatric palliative care team. Perhaps the most troubling finding of Ragsdale et al was that black children were about 20% less likely than white children to receive opioids and/or sedatives during their final days. It is difficult to acknowledge that this sort of inequity exists within the medical profession, within pediatrics, and especially at end-of-life. Yet, Ragsdale et al reference 2 other studies demonstrating similar disparities in pediatric oncology and hospice care. Although further research is needed to elucidate the origins and perpetuating factors of these differences, the gap demonstrated in the analysis by
Ragsdale et al is reason enough for humble reflection on potential biases and prejudices embedded within Western medical culture. There is much work still to do to optimize end-of-life care for children. Understanding trends and variations in practice is a beginning, and the information presented by Ragsdale et al is a welcome contribution to the literature. As pediatric palliative care continues to grow and mature as a specialty, more patients are spending their last days at home with hospice support, especially children with chronic complex conditions, and the adequacy of symptom management for these patients will need to be separately assessed. Ongoing special attention must be paid to patients dying in the hospital, as these patients will continue to have complex symptom management needs, will be more likely to undergo aggressive treatments, and will have complicated needs related to medical decision-making. It will become increasingly important for hospitals to support the development of multidisciplinary pediatric palliative care teams that can address these issues. n Sabrina F. Derrington, MD Division of Critical Care Medicine Northwestern University Feinberg School of Medicine Ann and Robert H. Lurie Children’s Hospital Chicago, Illinois Reprint requests: Sabrina F. Derrington, MD, Division of Critical Care Medicine, Northwestern University Feinberg School of Medicine, Ann and Robert H. Lurie Children’s Hospital, 225 E. Chicago Ave, Box 73, Chicago, IL 60611. E-mail: [email protected]
References 1. Ragsdale L, Zhong W, Morrison W, Munson D, Kang TI, Dai D, et al. Pediatric exposure to opioid and sedation medications during terminal hospitalizations in the United States, 2007-2011. J Pediatr 2015;166: 587-93. 2. Zernikow B, Michel E, Craig F, Anderson BJ. Pediatric palliative care: use of opioids for the management of pain. Pediatr Drugs 2009;11:129-51. 3. Burns JP, Sellers DE, Meyer EC, Lewis-Newby M, Truog RD. Epidemiology of death in the PICU at five US teaching hospitals. Crit Care Med 2014;42:2101-8. 4. Weidner NJ, Plantz DM. Ethical considerations in the management of analgesia in terminally ill pediatric patients. J Pain Symptom Manage 2014;48:998-1003. 5. Friebert S. Pain management for children with cancer at the end of life: beginning steps toward a standard of care. Pediatr Blood Cancer 2009; 52:749-50.
525
