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Published online November 17, 2008
PEDIATRICS Vol. 122 No. 6 December 2008, pp. e1174-e1178 (doi:10.1542/peds.2008-0952)
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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

a Pediatric Critical Care Medicine, University of Alabama at Birmingham, Birmingham, Alabama
b Department of Anesthesiology and Critical Care
d Center for Research Integrity
e Pediatric Advanced Care Team, Department of Medical Ethics, and General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania
c School of Medicine and Dentistry, University of Rochester Medical Center, Rochester, New York


    ABSTRACT
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 REFERENCES
 
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 Pediatrics 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 common 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 attendance 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.


Key Words: bereavement • communication • critical care

Abbreviations: OR—odds ratio • CI—confidence interval

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.


    METHODS
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 REFERENCES
 
We developed a Web-based survey by using commercial software (Inquisite, Inc, Austin, TX) after an initial literature 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 solicited information about physician and institutional characteristics 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 Section 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%. Responses were anonymous for analysis.

Data are presented as frequency counts, percentages, and mean or median as indicated. Associations of demographic and attitudinal variables with the likelihood of follow-up contact after a patient's death and funeral attendance were evaluated by using multivariable ordered logistic regression. All analyses were performed using Stata 10 (Stata Corp, College Station, TX).

The institutional review board at the Children's Hospital of Philadelphia approved the conduct of this study. The full survey instrument is available from the corresponding author.


    RESULTS
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 REFERENCES
 
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 ± 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 following subspecialties: anesthesia (22), cardiology (9), pulmonary (4), general pediatrics (14), palliative care (3), and other (9).


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TABLE 1 Characteristics of Survey Respondents

 
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 (±2.8 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 families contact information at the time of death and designating staff to offer follow-up. All physicians who reported 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 >50% 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 telephone calls, and 56% support groups. Many also wrote in responses indicating the use of memory boxes, handprints or footprints, or the provision of books and other materials on grieving.


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TABLE 2 Attitudes and Practices (N = 204)

 

Figure 1
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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."

 
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 both the family and the practitioners. No respondents answered "strongly disagree" when asked whether follow-up helps the family. Spirituality of their patients was considered at least somewhat important by most of the participants. 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 respondents' age, race, religion, and region of the country (Fig 2), respondents who reported greater degrees of contacting 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 specific religious affiliation was statistically different from the others regarding the degree of contacting families; neither was the overall set of religious affiliations statistically associated with this self-reported practice (P = .59 for the likelihood ratio test comparing models with and without religious affiliation). A similar multivariable analysis that examined the respondents' degree of attending 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 funerals), but these associations were attenuated compared with the analysis of any form of follow-up contact, and none was statistically significant (Fig 3).


Figure 2
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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
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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 respondent (predictors); the model also adjusted for the respondent's age, race, and region of the country.

 

    DISCUSSION
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 REFERENCES
 
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 bereavement practices among pediatric intensivists or, for that matter, any type of pediatrician. Pediatric intensivists 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 sample 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 (www.abp.org).

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 medicine physicians found that only 3% of these physicians had follow-up contact with families and only 7% reported 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 medical center found a higher follow-up rate than other previously published studies, with 68% reporting telephone contact.7 Differences between the levels of contact reported by these studies and ours may be attributable to differences among population of physicians or subspecialties or by differences in what constitutes "follow-up" after the death of a patient, given that there is no standard definition. It seems that our respondents did 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 programs are organized through nursing, social work, chaplaincy, or bereavement coordinators, and our respondents may not have been aware of the full range of services available.

A different perspective on our topic comes from surveys that assessed the experience of bereaved families. The families in 1 study reported contact from the physicians 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 <10% among emergency medicine physicians5,6 but a higher rate among pediatric residents at 23%.10 We found in our sample that more than two thirds of those surveyed reported attending funerals on occasion, with most attending <25% of the time and with, interestingly, 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 uncomfortable 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 notion that follow-up contact was helpful to either the bereaved 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 contact may allow them to bring up questions about the circumstances 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 functioning 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 contact helped the families or the physician, and additional study on this issue may be illuminating.


    CONCLUSIONS
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 REFERENCES
 
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 physician 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.


    FOOTNOTES
 
Accepted 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: sborasino{at}peds.uab.edu

The authors have indicated they have no financial relationships relevant to this article to disclose.

Drs Borasino and Morrison contributed equally to this work.


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 potential factors that are associated with the practice in this particular group.

 


    REFERENCES
 TOP
 ABSTRACT
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSIONS
 REFERENCES
 
1. Meert KL, Thurston CS, Briller SH. The spiritual needs of parents at the time of their child's death in the pediatric intensive care unit and during bereavement: a qualitative study. Pediatr Crit Care Med. 2005;6 (4):420 –427[CrossRef][Medline]

2. Macdonald ME, Liben S, Carnevale FA, et al. Parental perspectives on hospital staff members' acts of kindness and commemoration after a child's death. Pediatrics. 2005;116 (4):884 –890[Abstract/Free Full Text]

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[CrossRef][Web of Science][Medline]

4. Pollack MM, Patel KM, Ruttimann UE. PRISM III: an updated Pediatric Risk of Mortality score. Crit Care Med. 1996;24 (5):743 –752[CrossRef][Web of Science][Medline]

5. Schmidt TA, Tolle SW. Emergency physicians' responses to families following patient death. Ann Emerg Med. 1990;19 (2):125 –128[CrossRef][Web of Science][Medline]

6. Tolle SW, Elliot DL, Hickam DH. Physician attitudes and practices at the time of patient death. Arch Intern Med. 1984;144 (12):2389 –2391[Abstract/Free Full Text]

7. Ellison NM, Ptacek JT. Physician interactions with families and caregivers after a patient's death: current practices and proposed changes. J Palliat Med. 2002;5 (1):49 –55[CrossRef][Medline]

8. Meert KL, Eggly S, Pollack M, et al. Parents' perspectives regarding 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[CrossRef][Web of Science][Medline]

9. Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med. 2002;30 (1):226 –231[CrossRef][Web of Science][Medline]

10. Serwint JR, Rutherford LE, Hutton N. Personal and professional experiences of pediatric residents concerning death. J Palliat Med. 2006;9 (1):70 –81[CrossRef][Web of Science][Medline]

11. Ahrens WR, Hart RG. Emergency physicians' experience with pediatric death. Am J Emerg Med. 1997;15 (7):642 –643[CrossRef][Web of Science][Medline]

12. Holland JC. Management of grief and loss: medicine's obligation and challenge. J Am Med Womens Assoc. 2002;57 (2):95 –96[Medline]

13. Bedell SE, Cadenhead K, Graboys TB. The doctor's letter of condolence. N Engl J Med. 2001;344 (15):1162 –1164[Free Full Text]

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[Web of Science][Medline]

15. Redinbaugh EM, Sullivan AM, Block SD, et al. Doctors' emotional reactions to recent death of a patient: cross sectional study of hospital doctors. BMJ. 2003;327 (7408):185[Abstract/Free Full Text]


PEDIATRICS (ISSN 1098-4275). ©2008 by the American Academy of Pediatrics

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