for whom the bell tolls . . .
TRANSCRIPT
dosage that appears excessive to many in neonatology may notbe excessive. Second, because developmental implications fa-vor the strategy of prevention compared with treatment of irondeficiency in at-risk infants, this topic is worthy of further sci-entific interrogation.
Pamela J. Kling, MDUniversity of Wisconsin and Meriter HospitalPediatrics/Division of Neonatology 6 Center
Madison, Wisconsin
REFERENCES1. Brække K, Bechensteen AG, Blomhoff R, Haaland K, Staff AC. Oxidative stressmarkers and antioxidant status following oral iron supplementation to very low birthweight infants. J Pediatr 2007;151:23-8.2. Bechensteen AG, Håga P, Halvorsen S, Whitelaw A, Liestøl K, Lindemann R, etal. Erythropoietin, protein, and iron supplementation and the prevention of anaemia ofprematurity. Arch Dis Child 1993;69:19-23.3. AAP. Iron Deficiency. In: American Academy of Pediatrics, editor. PediatricNutrition Handbook. 5th ed. Chicago, IL: American Academy of Pediatrics; 2004. p.299-312.
4. Siddappa AJM, Rao RB, Wobken JD, Leibold EA, Connor JR, Georgieff MK.Developmental changes in the expression of iron regulatory proteins and iron transportproteins in the perinatal rat brain. J Neurosci Res 2002;68:761-75.5. Williams ML, Shoot RJ, O’Neal PA, Oski FA. Role of dietary iron and fat onvitamin E deficiency anemia of infancy. N Engl J Med 1975;292:887-90.6. Strauss RG. Transfusion therapy in neonates. Am J Dis Child 1991;145:904-11.7. Kling PJ, Sullivan TM, Leftwich ME, Roe DJ. Score for neonatal acute physiologypredicts erythrocyte transfusions in premature infants. Arch Dis Pediatr Adolesc Med1997;151:27-31.8. Widness JA, Seward VJ, Kromer IJ, Burmeister LF, Bell EF, Strauss RG.Changing patterns of red blood cell transfusion in very low birth weight infants. J Pediatr1996;129:680-7.9. Lozoff B, Georgieff MK. Iron deficiency and brain development. Sem PediatrNeurol 2006;13:158-65.10. Friel JK, Aziz K, Andrews WL, Serfass RE. Iron absorption and oxidant stressduring erythropoietin therapy in very low birth weight premature infants: a cohort study.BMC Pediatrics [serial on the internet]. 2005 Aug; 5 (29): [6p]. Available from: http://www.biomedcentral.com/1471-2431/5/29.11. Pollak A, Hayde M, Hayn M, Herkner K, Lombard KA, Lubec G, et al. Effectof intravenous iron supplementation on erythropoiesis in erythropoietin-treated prema-ture infants. Pediatrics 2001;107:78-85.12. Miller SM, McPherson RJ, Juul SE. Iron sulfate supplementation decreases zincprotoporphyrin to heme ratio in premature infants. J Pediatr 2006;148:44-8.13. Dani C, Martelli E, Bertini G, Pezzati M, Rossetti M, Buonocore G, et al. Effectof blood transfusions on oxidative stress in preterm infants. Arch Dis Child2004;89:F408-11.
For Whom The Bell Tolls . . . .
A lthough the concept of “family-centered care” isnearly a half a century old, its impact on changingthe “hospital culture” is most apparent over the last
two decades.1 Listening to and understanding the parentalperspective regarding death follow-up meetings is an im-plementation of family-centered care values within ourhospitals and medical practice. Many books and medicaljournals have reported the emotions and opinions of par-ents during the days, months, and years after the death oftheir child.2-5 One of the recurring themes is the parents’need for information about their children’s hospital careand death. In addition, parents reflect on the quality ofcommunication (verbal and nonverbal) that existed be-tween the family, physicians, nurses, and staff. How dophysicians and hospitals facilitate these well-documentedparental needs? Are we providing a service that parents findbeneficial? An evaluation of a parent’s perspective regard-ing death follow-up meetings would be desirable to provideinsight into our practice methodology to achieve thesefamily-centered goals.
In this issue of The Journal, Meert et al6 report adescriptive survey of the parent’s perspective of the desir-ability, content, and conditions for physician-parent meet-ing after the death of their child in the ICU. The parentalresponses were obtained by telephone interview after initialcontact by mail. Parental responses were documented onseveral important issues, including the parent’s desire to
meet with the physician, timing and location of the meet-ing, and who would attend the meeting. Limitations of thestudy are 1) a relatively small sample size, 2) the interviewswere conducted within a time span of 4 to 15 months afterthe child’s death, and 3) parental responses were obtainedfrom only English- and Spanish-speaking participants,thus potentially limiting data concerning cultural variation.Despite these limitations, valuable insights are providedabout parents’ perspectives of medical practice after thedeath of patients, and these insights should encourage us toexamine our deathfollow-up meetingpractices.
Not surpris-ingly, 59% of parentsdesired to meet withthe child’s intensivecare physician at somepoint. Unfortunately,only 13% of parentshad a scheduled meet-ing with any physicianto discuss their child’sdeath; 82% of the par-ticipants were willingto return to the hos-pital for a scheduled
See related article, p 50
Reprint requests: Michael W. Crossman,MD, PhD, Division of Neonatology, Cincin-nati Children’s Hospital Research Founda-tion, Department of Pediatrics, Universityof Cincinnati College of Medicine, 3333Burnet Avenue, ML 7009, Cincinnati, OH45229. E-mail: [email protected].
J Pediatr 2007;151:4-5
0022-3476/$ - see front matter
Copyright © 2007 Mosby Inc. All rightsreserved.
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4 Editorials The Journal of Pediatrics • July 2007
meeting to discuss events leading to pediatric ICU admis-sion and death, cause of death, treatment, autopsy results,and seeking advice about how to communicate about thedeath with other family members. Clearly, parents desire toparticipate in death follow-up meetings. Some that chosenot to follow up commented that they were satisfied withthe information already provided. The median time ofrequest for interview was 8 months after the child’s death.Such postponement may have influenced some parents notto participate, especially if the parents felt there was nonew information to be shared. Slightly more than one thirdof those parents who did not wish to return for a meetingstated that they were dissatisfied with the physician’s avail-ability and communication skills. Parents requested anappointment that would include both parents; some pre-ferred the inclusion of a grandparent and one of the child’sICU nurses.
When is the appropriate time to hold death follow-upmeetings? Loss and helplessness are two painful and paralyz-ing conditions that overwhelm a family after the death of achild.2 The literature suggests that families may be in anemotional and cognitive “fog” during the immediate days afterthe death. Perhaps these meetings should be scheduled afterthe preliminary autopsy results are available. In most cases,preliminary autopsy results should be available by 4 to 6 weeksafter the death. Reviewing the details of the death and au-topsy results will reinforce the medical history, recognizes theexistence and value of the child’s life, and provides a healingopportunity for the follow-up team to attempt to dispense anyfeelings of parental guilt.2 Meeting with the family may ormay not provide new medical information; however, availabil-ity demonstrates our “willful connection” to the family. Non-abandonment represents a central ethical obligation for phy-sicians to our patients and their families.7
Who should be invited to death follow-up meetings?Parents in this study chose their closest support person-usually aspouse. Some requested the child’s grandparents or anotherfamily member who might help the parents facilitate communi-cation of medical details to other family relatives. Not only is thedeath follow-up meeting an informative and healing service tothe family, but it is also an educational opportunity for phy-sicians and the entire health care team. Therefore, fellows andresidents, who may have developed a close rapport with thefamily, should be included as well. How else is their educationin the conduct of this sensitive meeting to be developed?Exposure and participation in this activity will strengthentheir ability to communicate effectively and with appropriateempathy and sensitivity.8
The complexities and pitfalls of communication be-tween physicians and parents are well described in the articleby Fox et al.9 Parents who cited dissatisfaction with thephysician’s availability and communication skills provide uswith an opportunity to improve our communication practicesin intensive care medicine and to avoid parental feelings ofmistrust.
How we communicate with families about palliativecare and end-of-life issues during the hospitalization of theirchildren significantly affects the success of future communi-cations with the families.4,9,10 Quill et al10 have examined ourresponses during end-of-life situations and have providedinstructive advice on empathic communications with families.
It is encouraging to see a study that examines theparental perspective of death follow-up meetings. The Insti-tute of Medicine Committee on Palliative and End-of-LifeCare for Children and Their Families has endorsed furtherscientific research regarding this subject and recommendedthat the NIH establish priorities to fund studies in this area.11
Further studies involving family death follow-up meetingswill provide insights into the communication practices used inour pediatric and newborn intensive care units. These insightsshould provide direction for future investigation to improvethe quality of our practice. Evaluating the parental perspectiveon our death follow-up practices is a challenge for all healthcare providers to “look into the mirror” and see the reflectionof our communication skills and humanity. Will we like whatwe see?
Who benefits by participating in death follow-up meet-ings? We all do. Perhaps the seventeenth century writer JohnDonne had death follow-up meetings in mind when he wrote,“[A]ny man’s death diminishes me, because I am involved inmankind, and therefore never send to know for whom the belltolls; it tolls for thee.”12
Michael W. Crossman, MD, PhDDivision of Neonatology
Cincinnati Children’s Hospital Research FoundationDepartment of Pediatrics
University of Cincinnati College of MedicineCincinnati, Ohio
REFERENCES1. Eichner J, Johnson B. Family-centered care and the pediatrician’s role. Pediatrics2003;112:691-6.2. Rosof BD. The Worst Loss: How Families Heal from the Death of a Child. 1994,New York: Henry Holt and Company, LLC. 290.3. Newton RW, Bergin B, Knowles D. Parents interviewed after their child’s death.Arch Dis Child 1986;61:711-5.4. Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations.Pediatrics 2006;117:649-57.5. Finkbeiner AK. After the Death of a Child. 1996, New York: The Free Press.1-273.6. Meert K, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’perspectives regarding a physician-parent conference after their child’s death in thepediatric intensive care unit. J Pediatr 2007;151:50-5.7. Quill TE, Cassel CK. Nonabandonment: a central obligation for physicians. AnnIntern Med 1995;122:368-74.8. Sahler O, Frager G, Levetown M, Cohn FG, Lipson MA. Medical educationabout end-of-life care in the pediatric setting: principles, challenges, and opportunities.Pediatrics 2000;105:575-84.9. Fox S, Platt FW, White MK, Hulac P. Talking About the Unthinkable: Perinatal/Neonatal Communication Issues and Procedures. In Hermansen MC, editor. Clinics inPerinatology. Philadelphia: Elsevier; 2005, p. 157-70.10. Quill TE, Arnold RM, Platt F. ‘I wish things were different’: expressing wishes inresponse to loss, futility, and unrealistic hopes. Ann Intern Med 2001;135:551-5.11. Field M, Behrman R. When Children Die: Improving Palliative and End-of-LifeCare for Children and Their Families. Washington, DC: National Academies Press;2003, pp. 1-16.12. Donne J. Devotions Upon Emergent Occasions: Meditation XVII. H. Alford, ed.London: John W. Parker; 1839, pp. 574-5.
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