DOI: 10.1542/peds.2008-0952 2008


Published on

Published in: Health & Medicine
  • Be the first to comment

  • Be the first to like this

No Downloads
Total views
On SlideShare
From Embeds
Number of Embeds
Embeds 0
No embeds

No notes for slide

DOI: 10.1542/peds.2008-0952 2008

  1. 1. DOI: 10.1542/peds.2008-0952 2008;122;e1174-e1178; originally published online Nov 17, 2008;Pediatrics Feudtner Santiago Borasino, Wynne Morrison, Jordan Silberman, Robert M. Nelson and Chris Practices Survey of Pediatric Critical Care Practitioners' Beliefs and Self-Reported Physicians' Contact With Families After the Death of Pediatric Patients: A located on the World Wide Web at: The online version of this article, along with updated information and services, is rights reserved. Print ISSN: 0031-4005. Online ISSN: 1098-4275. Grove Village, Illinois, 60007. Copyright © 2008 by the American Academy of Pediatrics. All and trademarked by the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk publication, it has been published continuously since 1948. PEDIATRICS is owned, published, PEDIATRICS is the official journal of the American Academy of Pediatrics. A monthly by on October 25, 2010www.pediatrics.orgDownloaded from
  2. 2. ARTICLE Physicians’ Contact With Families After the Death of Pediatric Patients: A Survey of Pediatric Critical Care Practitioners’ Beliefs and Self-Reported Practices Santiago Borasino, MD, MPHa, Wynne Morrison, MDb, Jordan Silberman, MAPP, BAc, Robert M. Nelson, MD, PhDb,d, Chris Feudtner, MD, PhD, MPHe aPediatric Critical Care Medicine, University of Alabama at Birmingham, Birmingham, Alabama; bDepartment of Anesthesiology and Critical Care, dCenter for Research Integrity, and ePediatric Advanced Care Team, Department of Medical Ethics, and General Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania; cSchool of Medicine and Dentistry, University of Rochester Medical Center, Rochester, New York The authors have indicated they have no financial relationships relevant to this article to disclose. What’s Known on This Subject Follow-up contact between physicians and families of the patient after the patient’s death may help families in the bereavement process. There have been no studies of this practice among pediatric critical care practitioners. What This Study Adds We describe, through physician self-reporting, the practice of contacting families after the death of a patient among critical care pediatricians and explore some of the poten- tial factors that are associated with the practice in this particular group. ABSTRACT OBJECTIVES. Although research with bereaved families has shown that they appreciate contact with clinicians after the child’s death, this realm of clinical practice remains empirically uncharted. The objective of this study was to describe pediatric critical care practitioners’ attitudes and self-reported practices regarding contacting families after a patient’s death. METHODS. A total of 376 board-certified members of the American Academy of Pedi- atrics Section of Critical Care received e-mail invitations to complete a Web-based questionnaire; 204 members responded (effective response rate: 54.3%). RESULTS. Most (95%) participants reported 0 to 1 patient deaths per week. A total of 79% of the respondents reported contacting families at least sometimes, 71.9% had attended funerals, and only 2.5% thought that it was inappropriate for clinicians to attend funerals. A total of 75.9% agreed that follow-up contact helps the family, whereas 47.3% agreed that follow-up contact helps the physicians. The most com- mon methods of follow-up contact included the passive measures of providing contact information; active methods such as meeting with the family, calling them by telephone, or writing a letter or note were used less often. In multivariable analysis, respondents were more likely to report contact with a family after the death of a child when they affirmed the belief that such contact was useful to the family or to the physician or when they were female physicians. Regarding reported funeral atten- dance after the death of a patient, multivariable analysis revealed similar patterns of association but to an attenuated and nonstatistically significant degree. CONCLUSIONS. A high proportion of pediatric critical care physicians have contacted bereaved families and attended funerals after the death of a child patient. These practices were consistently associated with the belief that such follow-up contact helps the family or the practitioner. Pediatrics 2008;122:e1174–e1178 BEREAVED PARENTS APPRECIATE follow-up contact from the physician who cared for their child.1,2 It is also possible that such follow-up contact helps the parents’ bereavement process and may help clinicians process their own emotional response surrounding a death, yet which factors influence physicians’ decisions or behavior regarding follow-up contact? In most general pediatricians’ careers, the death of a patient is a singularly memorable event,3 yet for pediatric critical care practitioners, patients often die, with reported patient mortality rates in PICUs ranging between 2.2% and 16.4%.4 Despite the potential significance and frequency of contact by pediatric intensivists with families after the death of a pediatric patient, practices and opinions of pediatric intensivists regarding postmortem contact with families have not been studied empirically. Therefore, we surveyed a sample of pediatric critical care attending physicians to describe their current practices and attitudes and to analyze whether physician characteristics or opinions were associated with reported likelihood of follow-up contact or attendance at funerals. peds.2008-0952 doi:10.1542/peds.2008-0952 Drs Borasino and Morrison contributed equally to this work. Key Words bereavement, communication, critical care Abbreviations OR—odds ratio CI—confidence interval Accepted for publication Sep 2, 2008 Address correspondence to Santiago Borasino, MD, MPH, University of Alabama at Birmingham, Pediatric Critical Care Medicine, ACC 504, 1600 7th Ave S, Birmingham, AL 35233-1711. E-mail: PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2008 by the American Academy of Pediatrics e1174 BORASINO et al by on October 25, 2010www.pediatrics.orgDownloaded from
  3. 3. METHODS We developed a Web-based survey by using commercial software (Inquisite, Inc, Austin, TX) after an initial lit- erature review and discussions with colleagues about their experiences with and opinions about postmortem contact with patient families and attendance of funerals. A draft version of the questionnaire was then pilot tested for content and face validity by 5 attending pediatric intensivists at the Children’s Hospital of Philadelphia. The final instrument contained 21 questions that solic- ited information about physician and institutional char- acteristics and the respondent’s opinions about and practices regarding postmortem contact with patients’ families. Self-reported race and geographic region were defined by using US Census Bureau designations. The survey was sent as a link embedded in an e-mail to all members of the American Academy of Pediatrics Sec- tion of Critical Care who were listed as being board certified in pediatric critical care by the American Board of Pediatrics and had valid e-mail addresses (376 eligible physicians). Intensivists from our own institution who had participated in the pilot surveys were excluded. Two reminders were sent to all nonrespondents. A total of 204 responses were received, yielding an effective response rate of 54.3%. Re- sponses were anonymous for analysis. Data are presented as frequency counts, percentages, and mean or median as indicated. Associations of demo- graphic and attitudinal variables with the likelihood of follow-up contact after a patient’s death and funeral attendance were evaluated by using multivariable or- dered logistic regression. All analyses were performed using Stata 10 (Stata Corp, College Station, TX). The institutional review board at the Children’s Hos- pital of Philadelphia approved the conduct of this study. The full survey instrument is available from the corre- sponding author. RESULTS Pediatric intensivists responded to the survey from all regions of the United States, were on average 46.1 years of age, and had been in practice for 12.5 Ϯ 7.2 years (Table 1). Approximately two thirds of the physicians were male, and a large majority were white. The median amount of clinical service was 14 weeks per year. Most respondents reported a specific religious affiliation. Sixty- one (30%) reported additional certification in the fol- lowing subspecialties: anesthesia (22), cardiology (9), pulmonary (4), general pediatrics (14), palliative care (3), and other (9). Respondents reported varying attitudes and practices regarding follow-up with families after a patient’s death (Table 2). Seventy-eight percent sometimes or always contact families. Average reported time until follow-up was 4.5 weeks (Ϯ2.8 weeks). Respondents who contact families use various methods of doing so (Fig 1). A low percentage reported active means of contact such as writing, calling, or meeting with families, and a larger percentage reported passive means such as giving fami- lies contact information at the time of death and desig- nating staff to offer follow-up. All physicians who re- ported that they followed up with families, however, reported active means of contact at least some of the time. Only 20% of the participants reported meeting or calling families for autopsy results Ͼ50% of the time. Physicians also reported other follow-up services at their institutions, with 82% reporting programs for sending cards, 49% the availability of counseling services, 66% institutional memorial services, 63% follow-up tele- phone calls, and 56% support groups. Many also wrote in responses indicating the use of memory boxes, hand- prints or footprints, or the provision of books and other materials on grieving. Few respondents attend funerals regularly, with two thirds reporting attending 1% to 25% of the time, and one third never. Almost all of the respondents believe that a provider’s attending a funeral is appropriate or sometimes appropriate. Three quarters reported no change in their funeral attendance practice over time. Of those who have changed practice, 28 (57%) attend fewer funerals that they used to and 21 (43%) attend more. Most respondents believe that follow-up with the family helps TABLE 1 Characteristics of Survey Respondents Characteristic Value Age, n (%) 34–39 y 42 (21.0) 40–49 y 97 (48.0) 50–59 y 59 (21.0) 60–67 y 4 (2.0) Gender, n (%) Male 131 (64.2) Female 73 (35.8) Race, n (%) White 174 (85.3) Asian 16 (7.9) Black/African American 5 (2.5) Other 6 (3.0) No answer 3 (1.5) Hispanic or Latino, n (%) Yes 8 (3.9) Religion, n (%) Protestant 58 (28.7) Catholic 46 (23.0) Jewish 31 (15.5) Agnostic 19 (9.5) Atheist 10 (4.9) Hindu 5 (2.5) Unitarian 4 (2.0) Muslim 3 (1.5) Buddhist 1 (0.5) Other Christian 13 (6.5) Other 9 (4.5) Region, n (%)a Northeast 42 (22.6) Midwest 40 (21.5) South 69 (37.1) West 35 (18.8) Years in practice, mean (SD) 12.5 (7.2) Weeks of service per year, median (interquartile range) 14 (10–20) Patient deaths per week, n (%) 0–1 193 (95.5) 2–3 9 (4.5) a One respondent from Puerto Rico classified as “South.” PEDIATRICS Volume 122, Number 6, December 2008 e1175 by on October 25, 2010www.pediatrics.orgDownloaded from
  4. 4. both the family and the practitioners. No respondents an- swered “strongly disagree” when asked whether follow-up helps the family. Spirituality of their patients was consid- ered at least somewhat important by most of the partici- pants. Those who answered an open-ended question about why they did not attend funerals reported a lack of time or logistic difficulties (39%), feeling personally uncomfortable or too emotional (31%), or believing that it might be inappropriate or intrusive (20%). In a multivariable analysis that adjusted for respon- dents’ age, race, religion, and region of the country (Fig 2), respondents who reported greater degrees of contact- ing patient families after the death of a child were more likely also to affirm the belief that such contact was helpful to families (odds ratio [OR] 3.1 [95% confidence interval (CI): 1.9–5.1]) and was helpful to the physician (OR: 1.7 [95% CI: 1.1–2.7]). Being female was also an independent predictor of being more likely to contact bereaved families (OR: 2.1 [95% CI: 1.1–4.4]). No spe- cific religious affiliation was statistically different from the others regarding the degree of contacting families; neither was the overall set of religious affiliations statis- tically associated with this self-reported practice (P ϭ .59 for the likelihood ratio test comparing models with and without religious affiliation). A similar multivariable analysis that examined the respondents’ degree of at- tending funerals as a specific form of follow-up contact revealed similar patterns (with female respondents and respondents who affirmed that follow-up was beneficial to families or to physicians more likely to attend funer- als), but these associations were attenuated compared with the analysis of any form of follow-up contact, and none was statistically significant (Fig 3). DISCUSSION A large majority of pediatric intensivists who responded to this survey reported that they contact families after the death of a patient at least some of the time. Women are more likely to report following up with a family, as are physicians who believe that such follow-up helps either the family or the practitioner. Our findings should be interpreted in light of the study’s novelty as well as its limitations. This study is, to our knowledge, the first assessment of professional be- reavement practices among pediatric intensivists or, for that matter, any type of pediatrician. Pediatric intensiv- ists are a pertinent population to study concerning this issue, because the death of patients is not uncommon in their practice. Their follow-up practices may be different, however, than those of non-PICU pediatricians, because PICU-based intensivists will less often have long-term relationships with patients and families than their non- PICU colleagues. We relied on self-reported practices rather than observation of actual behaviors, and the degree of concordance between reported versus actual behaviors regarding postmortem follow-up is unknown. Second, although our 54.3% effective response rate was consistent with that seen in most surveys of physicians, the beliefs and practices of respondents may not be comparable to those of nonrespondents. Third, our sam- ple frame, although national in scope, comprised only pediatric intensivists who are members of the American Academy of Pediatrics Critical Care Section, representing 26% of the 1454 board-certified pediatric intensivists in the United States ( With these caveats in mind, we can compare our results to the few previous studies of physician practices and attitudes in this area. A study of emergency medi- cine physicians found that only 3% of these physicians had follow-up contact with families and only 7% re- ported calling with autopsy reports.5 In another survey, Oregon physicians reported offering to be available to the families (94%) and most followed up with autopsy results, but only 6% otherwise contacted the family after the funeral or scheduled an appointment.6 A survey of multispecialty physicians who practiced at a single med- ical center found a higher follow-up rate than other previously published studies, with 68% reporting tele- phone contact.7 Differences between the levels of con- tact reported by these studies and ours may be attribut- able to differences among population of physicians or subspecialties or by differences in what constitutes “fol- low-up” after the death of a patient, given that there is no standard definition. It seems that our respondents did TABLE 2 Attitudes and Practices (N ‫؍‬ 204) Question n (%)a Do you contact families whose child has died after they leave the hospital? Never 43 (21) Sometimes 117 (57) Always 44 (22) What percentage of funerals do you attend? 0 59 (29) 1–25 124 (61) 26–50 14 (7) 51–75 4 (2) 76–100 2 (1) Do you think it is appropriate for providers to attend funerals? No 5 (2) Sometimes 98 (48) Always 101 (50) Does follow-up with the physician help the family? Strongly disagree 0 (0) Disagree 3 (1) Neutral 46 (23) Agree 102 (50) Strongly agree 52 (26) Does follow-up with the family help the practitioner? Strongly disagree 3 (1) Disagree 12 (6) Neutral 92 (45) Agree 75 (37) Strongly agree 21 (10) How important is a patient’s spirituality in your daily practice? Not important 19 (9) Somewhat important 87 (43) Moderately important 56 (28) Very important 41 (20) a Totals do not all equal 100% as a result of rounding. e1176 BORASINO et al by on October 25, 2010www.pediatrics.orgDownloaded from
  5. 5. not think that giving a family their contact information or asking staff to do so constituted “follow-up,” because no physicians who reported that they contacted families reported only such passive measures. Our study assessed only physicians’ self-reported practices, but follow-up with families is usually a multidisciplinary endeavor, and the physicians surveyed did in fact report a wide variety of institutional follow-up processes. Many of these pro- grams are organized through nursing, social work, chap- laincy, or bereavement coordinators, and our respon- dents may not have been aware of the full range of services available. A different perspective on our topic comes from sur- veys that assessed the experience of bereaved families. The families in 1 study reported contact from the phy- sicians 29% of the time,8 and, in another, families said that physicians were “available” 63% of the time.9 Our study confirms a similar range of responses reported by physicians, with 21% “always” contacting families and 73% “always” or “sometimes” contacting families. Previous studies of funeral attendance have reported rates of Ͻ10% among emergency medicine physicians5,6 but a higher rate among pediatric residents at 23%.10 We FIGURE 1 Methods of follow-up contact reported by physicians. Data regarding frequency of use of various methods of follow-up reported for physicians who stated that they followed up with families after a patient’s death “always” or “sometimes.” FIGURE 2 Contact with family after the death of their child. Results of multivariable ordered logistic regression model, depicting association between increasing frequency of self-reported contact with the family after the death of their child (outcome) and characteristics of the respondent (predictors); the model also adjusted for the respondent’s age, race, and region of the country. FIGURE 3 Attendance at funerals after the death of a patient. Results of multivariable ordered logistic regression model, depicting association between increasing frequency of self- reported attendance at funerals for patients (outcome) and characteristics of the respon- dent (predictors); the model also adjusted for the respondent’s age, race, and region of the country. PEDIATRICS Volume 122, Number 6, December 2008 e1177 by on October 25, 2010www.pediatrics.orgDownloaded from
  6. 6. found in our sample that more than two thirds of those surveyed reported attending funerals on occasion, with most attending Ͻ25% of the time and with, interest- ingly, no association between funeral attendance and years in practice. Although fear has been cited as a possible reason that pediatric resident physicians do not attend funerals,10 our respondents who offered reasons for nonattendance cited feeling personally uncomfort- able or too emotional, feeling that attendance might be inappropriate or intrusive, or that they did not have the time to attend funerals. Our respondents affirmed to differing degrees the no- tion that follow-up contact was helpful to either the be- reaved family or the physician. These are questions ripe for additional inquiry, especially given the association that we observed between these beliefs and self-reported behavior. Several studies of bereaved families have found that they welcome contact from health care workers.1,2,11 Such con- tact may allow them to bring up questions about the cir- cumstances surrounding the death and may allow the health care team to evaluate for complicated grief.12 The potential benefit to physicians of contact with families after a patient’s death has been mentioned in the literature.10,12,13 Grief reactions14 and moderate levels of impact on func- tioning have been reported among physicians after the death of patient.15 Contact with families may allow doctors to process their own grief.12 Our survey did not explore precisely how the physicians thought that follow-up con- tact helped the families or the physician, and additional study on this issue may be illuminating. CONCLUSIONS The predominant factor associated with whether pediatric intensivists follow up with families after a patient’s death or attend funerals is a belief that such follow-up helps the family or helps the physician. Areas for future research include whether patient or family characteristics affect the likelihood of follow-up, whether follow-up with physicians helps the family’s bereavement process or helps the phy- sician regarding his or her own psychosocial outcomes related to the death of child patients, and which type and timing of follow-up method is most beneficial if so. REFERENCES 1. Meert KL, Thurston CS, Briller SH. The spiritual needs of parents at the time of their child’s death in the pediatric inten- sive care unit and during bereavement: a qualitative study. Pediatr Crit Care Med. 2005;6(4):420–427 2. Macdonald ME, Liben S, Carnevale FA, et al. Parental perspec- tives on hospital staff members’ acts of kindness and commem- oration after a child’s death. Pediatrics. 2005;116(4):884–890 3. Vazirani RM, Slavin SJ, Feldman JD. Longitudinal study of pediatric house officers’ attitudes toward death and dying. Crit Care Med. 2000;28(11):3740–3745 4. Pollack MM, Patel KM, Ruttimann UE. PRISM III: an updated Pediatric Risk of Mortality score. Crit Care Med. 1996;24(5): 743–752 5. Schmidt TA, Tolle SW. Emergency physicians’ responses to families following patient death. Ann Emerg Med. 1990;19(2): 125–128 6. Tolle SW, Elliot DL, Hickam DH. Physician attitudes and prac- tices at the time of patient death. Arch Intern Med. 1984; 144(12):2389–2391 7. Ellison NM, Ptacek JT. Physician interactions with families and caregivers after a patient’s death: current practices and pro- posed changes. J Palliat Med. 2002;5(1):49–55 8. Meert KL, Eggly S, Pollack M, et al. Parents’ perspectives re- garding a physician-parent conference after their child’s death in the pediatric intensive care unit. J Pediatr. 2007;151(1): 50–55, 55.e1–55.e2 9. Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspec- tives on end-of-life care in the pediatric intensive care unit. Crit Care Med. 2002;30(1):226–231 10. Serwint JR, Rutherford LE, Hutton N. Personal and profes- sional experiences of pediatric residents concerning death. J Palliat Med. 2006;9(1):70–81 11. Ahrens WR, Hart RG. Emergency physicians’ experience with pediatric death. Am J Emerg Med. 1997;15(7):642–643 12. Holland JC. Management of grief and loss: medicine’s obliga- tion and challenge. J Am Med Womens Assoc. 2002;57(2):95–96 13. Bedell SE, Cadenhead K, Graboys TB. The doctor’s letter of condolence. N Engl J Med. 2001;344(15):1162–1164 14. Behnke M, Reiss J, Neimeyer G, Bandstra ES. Grief responses of pediatric house officers to a patient’s death. Death Stud. 1987;11(3):169–176 15. Redinbaugh EM, Sullivan AM, Block SD, et al. Doctors’ emo- tional reactions to recent death of a patient: cross sectional study of hospital doctors. BMJ. 2003;327(7408):185 e1178 BORASINO et al by on October 25, 2010www.pediatrics.orgDownloaded from
  7. 7. DOI: 10.1542/peds.2008-0952 2008;122;e1174-e1178; originally published online Nov 17, 2008;Pediatrics Feudtner Santiago Borasino, Wynne Morrison, Jordan Silberman, Robert M. Nelson and Chris Practices Survey of Pediatric Critical Care Practitioners' Beliefs and Self-Reported Physicians' Contact With Families After the Death of Pediatric Patients: A & Services Updated Information including high-resolution figures, can be found at: References at: This article cites 15 articles, 3 of which you can access for free Subspecialty Collections Office Practice following collection(s): This article, along with others on similar topics, appears in the Permissions & Licensing tables) or in its entirety can be found online at: Information about reproducing this article in parts (figures, Reprints Information about ordering reprints can be found online: by on October 25, 2010www.pediatrics.orgDownloaded from