Impact of the Updated Guideline for Pediatric Brain Death Determination on Current Practice

Abstract

Background:

A guideline to determine pediatric brain death was updated in 2011. It is unknown how pediatric intensivists have accepted and adopted the revised guideline into clinical practice.

Methods:

We surveyed United States pediatric critical care attending physicians July 2013 to September 2013 and February 2020 to May 2020. Brain death testing practices and utilization of the 2011 pediatric and neonatal brain death guideline were assessed.

Results:

The 2020 respondents found that the revised pediatric brain death guideline were useful in clinical practice (93.7% versus 83.3%, p=0.0484) and provided more consistency and clarity (73.2% versus 63.1%, p=0.0462) when compared to 2013 respondents.

Conclusion:

This study demonstrates that with defined criteria, survey participants reported increased clarity and consistency. Findings from our study indicate that in clinical practice there is no significant deviation from the minimum requirements to determine brain death in children as outlined in the 2011 guideline.

INTRODUCTION

Brain death is a clinical diagnosis defined as the irreversible absence of neurological function with a known irreversible cause of coma. Coma and apnea must coexist to determine brain death.¹ Determination of brain death is based on historical features, a detailed neurologic examination, and corresponding apnea in a comatose patient with a known etiology of severe brain injury.¹

A guideline to determine pediatric brain death was developed in 1987 and updated in 2011.¹ The guideline was developed to assist physicians with determination of neurologic death, facilitate standardization of the examination and apnea testing while accounting for the unique physiologic aspects of children. The guideline allowed for a uniform approach to brain death determination (BDD) while maintaining the integrity of the definition of brain death.^2–4 To ensure the adoption and continued use of the guideline, periodic review and updates are necessary to confirm they remain relevant, are consistently used, reduce or eliminate physician confusion, and can be adapted across different regions.⁴

It has been 9 years since the latest update to the pediatric brain death guideline, but it is unknown how pediatric intensivists have accepted and adopted the revised guideline into their clinical practice.¹ During this time period, there have been concerns that the practice of BDD in adults is variable and may result in an inaccurate determination of death.^2,3 Therefore, we sought to evaluate how the current guideline has been accepted and implemented into clinical practice in the pediatric population. Understanding barriers, concerns, perspectives, usual practices, and advanced technologies that may have improved the ability to determine neurologic death provides opportunity for incorporation of new information into future guideline revisions as practice and technology evolves.

The objectives of this study were to (1) characterize pediatric BDD practices 18 months and again 9 years after implementation of the 2011 guideline and (2) identify physician’s perceptions and attitudes, barriers, and opportunities for improvement in the process of determining brain death. We hypothesize that the 2011 guideline and checklist improved clarity and helped standardize the process to determine brain death, and that opportunities for improving pediatric BDD practices exist.

METHODS

Design:

We conducted a self-administered survey specifically for pediatric critical care physicians practicing in the United States (US). Potential respondents were identified by the Society of Critical Care Medicine (SCCM) pediatric critical care section membership list (n=975 in 2013; n=1066 in 2020), which includes physicians, nurses, respiratory therapists, pharmacists, and others.

The 2013 and 2020 study were reviewed by both of our institutions’ Institutional Review Boards (IRB) as well as the SCCM Research Committee. Our study was found to be exempt with no requirement for informed consent and the SCCM Research committee approved distribution of the anonymous survey to SCCM pediatric critical care section members. Initial questions for both surveys determined eligibility for participation in this study. Eligible participants were practicing US pediatric critical care physicians. The 44-item and 31-item questionnaires were designed to seek information from practicing attending physicians, characterize current pediatric BDD practices, and their perceptions, attitude, barriers, and opportunities for improvement. The surveys were distributed 18 months and 9 years after publication of the 2011 Guidelines for the Determination of Brain Death in Infants and Children. Some questions were modified to determine any potential change in practice during the 9-year interval between the initial pediatric brain death survey and distribution of the second survey.

The first survey was opened on July 15, 2013 and closed September 13, 2013. Study data was collected and compiled by SCCM. The second survey was opened on February 21, 2020 and closed on May 5^th, 2020. Study data were collected and managed using REDCap electronic data capture hosted at our institution.⁵

Statistical Analysis:

Three statistical hypothesis tests, chi-squared test, Fisher’s exact test and Cochran-Armitage trend test, were used to compare the responses of questions from the 2013 and 2020 surveys. Chi-squared test was utilized to test the significance of the difference in responses for questions with nominal choices. In the contingency tables for those questions with nominal choices, if at least 20% of the cells had response counts less than 5, Fisher’s exact test was applied instead of chi-squared test for precise testing results. When the questions had ordinal choices, Cochran-Armitage trend test was used to compare responses.

When applying chi-squared test or Fisher’s exact test on single-select multiple-choice questions, the answer option(s) that appeared in only one of the surveys were removed from the contingency table for comparison. For multiple-choice questions with “Check all that apply” (multi-select), the analysis tables were simplified to either one or multiple 2x2 tables to study how the proportion of the interested answer option(s) change over time respectively. In the former case with only single 2x2 table, the interested answer option(s) were pre-specified before conducting analyses to avoid data dredging. In the latter case with multiple 2x2 tables, the Benjamini–Hochberg procedure was applied to correct for multiple comparisons. A p-value < 0.05 was considered statistically significant. Statistical software SAS v9.4 (SAS Institute Inc., Cary, NC, USA) was used for data analysis.

RESULTS

In 2013, 281 (30%) physicians responded to the survey, while in 2020, 142 (13.3%) physicians responded. Pediatric intensivists comprised the bulk of respondents. No significant differences in respondent characteristics were observed between the 2013 and 2020 surveys. [Table 1]

Table 1:

Demographic Characteristics of Survey Participants

	2013 Survey	2020 Survey	p value
Number of Participants	281	142
Number of SCCM Pediatric Section Members	975	1066
Response Rate	30.0%a	13.3%
Primary Specialty [Check all as apply]
Pediatrics/Pediatric Critical Care	277 (98.2%)	142 (100.0%)	0.1737b
Anesthesia	7 (2.5%)	1 (0.7%)
General Surgery	2 (0.7%)	0 (0.0%)
Neurosurgery	0 (0.0%)	0 (0.0%)
Neurology	1 (0.4%)	2 (1.4%)
Neurocritical Care	0 (0.0%)	1 (0.7%)
Years of Experience			0.6898
Less than 1 year	5 (1.8%)	3 (2.1%)
1 to 4 years	34 (12.1%)	18 (12.7%)
5 to 8 years	50 (17.7%)	29 (20.4%)
9 to 12 years	34 (12.1%)	23 (16.2%)
13 to 15 years	46 (16.3%)	12 (8.5%)
16 to 20 years	44 (15.6%)	15 (10.6%)
>20 years	69 (24.5%)	42 (29.6%)
Type of Pediatric Trauma Center			0.6103c
Level 1	185 (65.8%)	97 (68.3%)
Level 2	49 (17.4%)	25 (17.6%)
Not a Trauma Center	47 (16.7%)	16 (11.3%)
Estimated number of PICU admissions			0.1255
Less than 200	7 (2.5%)	2 (1.4%)
200 to 400 admissions	23 (8.2%)	9 (6.3%)
400 to 600 admissions	35 (12.5%)	10 (7.0%)
600 to 800 admissions	35 (12.5%)	20 (14.1%)
800 to 1000 admissions	42 (14.9%)	16 (11.3%)
Greater than 1000 admissions	114 (40.6%)	64 (45.1%)
I do not know	25 (8.9%)	17 (12.0%)
Did not answer	0 (0.0%)	4 (2.8%)

SCCM – Society of Critical Care Medicine; PICU – Pediatric Intensive Care Unit

^aDepending on survey question, not all participants answered the question, resulting in noted discrepancies between the totals of certain questions and overall response rate.

^bComparison for proportion of participants that selected “Pediatrics/Pediatric Critical Care”.

^cComparison for proportion of that selected a “a trauma center” (Level 1 or Level 2).

Institutional Policies for Pediatric Brain Death Determination

In 2013, 91.9% of survey respondents reported there was an institutional policy for BDD with 87.1% reporting a specific section dedicated for children. Similar responses of 92.3% and 93.8% respectively were noted in 2020. [Table 2]

Table 2:

Institutional Pediatric Brain Death Determination Practices

	2013 Survey	2020 Survey	p value
Does your hospital have an institutional policy providing brain death determination guidance?			0.9751
Yes	226 (91.9%)	131 (92.3%)
No	14 (5.7%)	8 (5.6%)
I do not know	6 (2.4%)	3 (2.1%)
If you answered yes, does the policy have a specific section for children?a			0.1908
Yes	202 (87.1%)	122 (93.8%)
No	23 (9.9%)	8 (6.2%)
I do not know	7 (3.0%)	0 (0.0%)
Which pediatric guidelines are you currently using to determine brain death in children in your ICU?			0.0634b
2011 SCCM/AAP/CNS Revised pediatric brain death guidelines	188 (75.8%)	119 (83.8%)
Internal Hospital guidelines and State Determined Criteria	55 (22.2%)	22 (15.5%)
1987 Special Task Force Guidelines	5 (2.0%)	1 (0.7%)
Not using any clinical guidelines	3 (1.2%)	-
Who declares brain death at your hospital?			1
Attending	244 (99.6%)	142 (100.0%)
Fellow	1 (0.4%)	0 (0.0%)
Resident	0 (0.0%)	0 (0.0%)
Is the ICU attending routinely present or directly involved with apnea testing during brain death determination?			1
Yes	247 (99.6%)	142 (100.0%)
No	1 (0.4%)	0 (0.0%)
Which specialists conduct brain death examinations at your hospital?
Pediatric Critical Care	240 (98.4%)	141 (99.3%)	0.6559
Pediatric Neurology	198 (81.1%)	112 (78.9%)	0.6559
Pediatric Neurosurgery	140 (57.4%)	47 (33.1%)	<0.0001
Trauma Surgeon	38 (15.6%)	-
Pediatric Surgery	-	4 (2.8%)
Other (i.e. Neonatology, Neurocritical Care, Non-Pediatric [Trauma, Neurosurgery]	-	13 (9.2%)
Does your hospital policy require an ancillary study (or studies) to be performed when making the determination of brain death in children?			0.0083
Yes	25 (10.2%)	4 (2.8%)
No	219 (89.8%)	138 (97.2%)

^aDepending on survey question, not all participants answered the question, resulting in noted discrepancies between the totals of certain questions and overall response rate.

^bComparison for proportion of participants that selected “2011 SCCM/AAP/CNS Revised pediatric brain death guidelines.”

A majority of survey respondents (75.8% in 2013 and 83.8% in 2020) reported the 2011 SCCM/AAP/CNS revised pediatric brain death guideline was being used to determine brain death in children (p=0.0634). In both surveys, pediatric brain death examinations were conducted primarily by pediatric critical care attending physicians. A majority of survey respondents (97.2%) in 2020 reported their hospital policy did not require an ancillary study to be performed when determining brain death in children compared to 89.8% in 2013 (p=0.0083). [Table 2]

Survey Respondent Pediatric Brain Death Determination Practices

The 2020 survey revealed that more respondents found the revised brain death guideline to be useful to clinical practice (93.7% versus 83.3%, p=0.0484), provided more consistency and clarity (73.2% versus 63.1%, p=0.0462), and their division uses the revised guidelines consistently (80.3% versus 51.9%, p<0.0001). [Table 3]

Table 3:

Survey Participant Pediatric Brain Death Determination Practices

	2013 Survey	2020 Survey	p value
I have found the revised pediatric brain death guideline…			0.0484
Useful in my clinical practice	204 (83.3%)	133 (93.7%)
Not useful in my clinical practice	8 (3.3%)	3 (2.1%)
I have not had the opportunity to use the revised guidelines to determine brain death	20 (8.2%)	3 (2.1%)
Complicated and confusing	8 (3.3%)	2 (1.4%)
I was not aware that revised guidelines have been published.	5 (2.0%)	1 (0.7%)
How have the new guidelines impacted your clinical practice in the determination of brain death for infants and children? [Check all that apply]:
Provided more consistency and clarity in the determination of death	137 (63.1%)	104 (73.2%)	0.0462
The checklist provides uniform documentation for determination of brain death	119 (54.8%)	97 (68.3%)	0.0162
I do not use the guidelines	33 (15.2%)	5 (3.5%)	0.0012
The guidelines have made determination of brain death more difficult	-	6 (4.2%)
Need for a second examination after ancillary testing	-	2 (1.4%)
Has not made it more difficult	-	1 (0.7%)
Need for two apnea tests	-	2 (1.4%)
Difficult to perform two apnea tests in patients with severe oxygenation impairment	-	1 (0.7%)
Do all members of your division use the revised guidelines consistently?			<0.0001
Yes, as part of revised hospital policy	122 (51.9%)	114 (80.3%)
I use ancillary studies to assist with declaration of brain death in the following situations [Check all that apply]:
When the clinical examination and apnea is inconclusive or cannot be completed	206 (84.8%)	129 (90.8%)	0.0873
To reduce the observation period between clinical examinations	113 (46.5%)	86 (60.6%)	0.0308
I do not typically use ancillary studies to confirm brain death	33 (13.6%)	11 (7.7%)	0.0873
For all patients who are undergoing brain death testing	24 (9.9%)	5 (3.5%)	0.0452
Are you aware that the revised guidelines suggest 2 clinical examinations even if an ancillary study has been performed and supports the diagnosis of brain death?			0.48
Yes	233 (94.7%)	132 (93.0%)
No	13 (5.3%)	10 (7.0%)
Are you aware that the revised guidelines suggest 2 separate attending physicians perform the clinical examinations?			0.7527
Yes	238 (96.7%)	139 (97.9%)
No	8 (3.3%)	3 (2.1%)
Have you found the checklist included in the revised brain death guidelines to be useful in your clinical practice to determine brain death in infants and children? [Check all that apply]:
Yes	114 (64.8%)	-
No	11 (6.3%)	-
I use my hospitals template developed off the checklist included in the revised brain death guidelines	-	78 (54.9%)
I document using the checklist or template included in the revised brain death guidelines	-	28 (19.7%)
I use my hospitals template or checklist	63 (35.8%)	54 (38.0%)	0.9116
I am unaware of a checklist within the guidelines	7 (4.0%)	6 (4.2%)	0.9116
I document brain death using a free text hand written or electronic note	15 (8.5%)	30 (21.1%)	0.0039
I do not use a checklist	1 (0.6%)	-
Have you specifically modified the checklist included in the revised brain death guidelines (other than hospital identification) to meet your clinical practice needs?			0.0091
Yes	40 (30.8%)	2 (7.1%)
No	90 (69.2%)	26 (92.9%)
Which tables and appendices have been most helpful in your practice? [Check all that apply]:
Checklist	148 (71.8%)	99 (69.7%)	0.6917
Summary recommendations table	116 (56.3%)	83 (58.5%)	0.6917
Algorithm	69 (33.5%)	55 (38.7%)	0.4424
Pharmacokinetic drug elimination table	55 (26.7%)	52 (36.6%)	0.1482
Comparison of the 1987 and Currently Revised Guidelines	47 (22.8%)	21 (14.8%)	0.1482
Summary of apnea testing studies	30 (14.6%)	29 (20.4%)	0.2664
Ancillary study diagnostic yield tables (3 tables)	30 (14.6%)	32 (22.5%)	0.1482

The 2013 survey revealed that 84.8% of time, ancillary studies were utilized primarily when the clinical examination and apnea test were inconclusive or could not be completed. This increased to 90.8% in 2020 (p=0.0873). Ancillary studies were used 46.5% of times to reduce the observation period between clinical examinations in 2013 and 60.6% of the time in 2020 (p=0.0308). Ancillary studies were used 9.9% of the time for all patients who were undergoing brain death testing in 2013 compared to 3.5% of the time in 2020 (p=0.0452). [Table 3]

The majority of respondents (74.6%) in the 2020 survey use the included checklist in the guideline. Respondents in 2020 (68.3%) agreed the checklist provided uniform documentation compared to 54.8% in 2013 (p=0.0162). A similar proportion of respondents in both surveys felt the summary recommendations table, checklist, and algorithm have been most helpful in their practice. [Table 3]

Impact of Revised Pediatric Brain Death Determination Guideline on Clinical Practice

Survey responses regarding reports of inaccurate determination of brain death or diagnostic error decreased in the 2020 survey [44 (18.6%) in 2013 versus 7 (4.9%) in 2020] (p=0.0002). In 2013, 12 (33.3%) respondents reported a confounding variable was not excluded as the reason why they believed diagnostic error occurred compared with none in 2020. Other reasons included inaccurate or incomplete examination as a contributing factor that decreased from 14 (38.9%) in 2013 to 2 (28.6%) in 2020 (p=0.3336). Instances of incorrect interpretation of an ancillary study decreased from 4 (11.1%) respondents in 2013 to 2 (28.6%) in 2020 although the overall percentage increased. [Table 4]

Table 4:

Impact of 2011 Pediatric Brain Death Determination Guidelines on Clinical Practice

	2013 Survey	2020 Survey	p value
Have you been involved in a case(s) where an inaccurate determination of brain death was made in an infant or child?			0.0002
Yes	44 (18.6%)	7 (4.9%)
No	193 (81.4%)	135 (95.1%)
If you answered yes, please explain why you believe this happened			0.3336
Examination was inaccurate or incomplete	14 (38.9%)	2 (28.6%)
A confounding variable was not excluded	12 (33.3%)	0 (0.0%)
Ancillary study was interpreted incorrectly	4 (11.1%)	2 (28.6%)
Apnea testing was not performed	3 (8.3%)	0 (0.0%)
Use of hypothermia	2 (5.6%)	0 (0.0%)
Initial observation period was too short	1 (2.8%)	0 (0.0%)
Other reason (i.e., unclear, use of ancillary rather than clinical exam, etc)	- a	3 (42.9%)
Have you been involved in a case(s) where applying the updated [2011] guidelines resulted in undue delay or confusion in the determination of brain death?			0.5424b
Yes	32 (13.6%)	20 (14.1%)
No	178 (75.4%)	111 (78.2%)
I do not know	26 (11.0%)	11 (7.7%)
If you answered yes, please explain why you believe this happened			0.206c
A confounding variable was not excluded	5 (33.3%)	2 (10.0%)
Ancillary study was interpreted incorrectly	3 (20.0%)	6 (30.0%)
Apnea testing was not performed	3 (20.0%)	2 (10.0%)
Examination was inaccurate or incomplete	2 (13.3%)	1 (5.0%)
Initial observation period was too short	2 (13.3%)	-
Other reason (i.e, observation period, two provider requirement, familial discord, presence of spinal reflexes. etc).	-	9 (45.0%)

^a8 (=44-12-1-14-3-4-2) is imputed for this missing value for p-value calculation.

^bComparison for proportion of participants that selected “No.”

^cComparison for proportion of participants that selected “Ancillary study was interpreted incorrectly.”

Respondents in both surveys indicated clinical examination criteria, apnea testing threshold, and documentation of death with existing technologies such as extracorporeal life support were issues/areas that needed to be addressed in future guideline revisions in addition to use of other modalities as ancillary studies. Among the responders, concerns related to ancillary studies decreased from 35.9% to 17.6% (p=0.001). [Figure 1]

Figure 1:

Issues and Areas that Require Further Attention in Future Guideline Revisions

Approach to Apnea and Laboratory Testing

A majority of 2020 survey respondents (89.4%) reported that a PaCO₂ >20 mm Hg above the baseline CO₂ and a PaCO₂ threshold > 60 mm Hg are used to determine fulfillment of apnea criteria. 2020 survey respondents indicated sodium level (95.1%) was the most common laboratory test routinely reviewed and/or documented prior to pediatric brain death testing. The acceptable serum sodium level before brain death testing ranged between 136 and 155 mEq/L with 47.2% of respondents indicating an upper sodium level range between 156 to 160 mEq/L, and 4.9% above 160 mEq/L. [Table Supplemental 1 and 2]

DISCUSSION

We hypothesized the 2011 revised pediatric brain death guideline improved clarity, and provided standardization for the brain death examination process once adopted into clinical practice. This study demonstrates that following revised guideline implementation, pediatric critical care physicians report increased clarity and consistency when determining brain death. Importantly, fewer reported cases of diagnostic error in pediatric BDD were noted. These findings indicate the current guideline has facilitated greater uniformity to determine pediatric brain death over time.

An important finding in our study was reduction in cases where diagnostic error occurred. The 2013 study revealed several factors contributing to this process: a confounding variable not being excluded, inaccurate or incomplete physical examination, apnea testing performed incorrectly or not at all, incorrect interpretation of an ancillary study, and lack of clarity of the standardized BDD from the previous 1987 guideline. While not statistically significant, there was a decrease in inaccurate or incomplete neurologic examination and increased adherence to confounding variable exclusion reported in the 2020 survey. There are several reasons why this reduction occurred. Determination of brain death in children is a clinical diagnosis made by physicians at the bedside. Physicians have different experience levels and reduced variability may reflect availability of the checklist (that serves as a reminder of the examination process and prerequisites required prior to brain death testing). It is possible the large cohort of physicians in the 2020 survey with more than 20 years of experience were aware of these confounding variables and their experience resulted in less error. The reduction in diagnostic error may also be related to the fixed observation period between examinations. Although observation periods provided in the guideline are arbitrary time periods, they have promoted standardization of when brain death testing can occur. This standardization is important so physicians are not independently selecting their own arbitrary observation periods between examinations that can result in variability and potential diagnostic error if the waiting period does not allow for exclusion of confounding medical conditions or treatment modalities.⁶

The current existing pediatric brain death guideline outlines the minimum criteria required to determine brain death. They serve as the primary tool that physicians use to properly conduct an examination and maintain its integrity. This guideline provides direction, a systematic approach to determine brain death, and does not challenge the legally established definition of death. Guideline adherence is essential. Variability to determine brain death may occur because of differences in hospital policy, regional statutes, or state laws that include requirements for additional testing or certification of physicians beyond the guideline recommendations.

Deviation from the minimum requirements to determine brain death resulting from lack of consistency can create confusion and raise concerns about brain death determination.⁷ This is especially true if diagnostic error occurs when determining brain death that may affect the public’s confidence in the medical community to make this crucial diagnosis. Recent high-profile cases have challenged the definition and how brain death is determined. Families, with support of the public and the courts, have objected to the diagnosis of brain death leading to continuation of artificial support despite consistent adherence to the current brain death guidelines for adults and children. In some cases, families have requested transfer of the decedent to another region of the country where somatic support can be continued when religious or philosophical objections to brain death exist.^7–9 Standardizing brain death determination and minimizing or eliminating practice variability to meet the defined minimum standards are essential to maintain public trust and reduce confusion.

There were several other important findings in this study. Our study found increased consensus by survey participants that the current guideline is useful in clinical practice, more consistent, and provides clarity in how to make a determination of brain death in children. Survey participants reported more institutions have adopted the revised guideline. The increased consistency and adherence to guideline use with fewer cases of diagnostic error is encouraging and indicates acceptance and standardization of pediatric brain death practices. The reduction in ancillary studies from 9.9% to 3.5% is consistent with adoption of the revised guideline as ancillary studies are no longer required to make a determination of brain death. These findings indicate the guideline has gained greater acceptance as standard practice to determine brain death in children. Furthermore, it is likely the checklist has been incorporated into the electronic medical record. This may have helped physicians determine and document elements of the brain death examination in a standardized format.

Several opportunities for improvement surfaced from our survey findings. A number of 2020 survey participants indicated they desired more guidance in areas such as approaching family members and helping families accept the determination of death. These complex discussions entail intense emotional and ethical challenges that are beyond the scope of this discussion but should be considered in future guideline revisions or separate position statements from medical organizations. The 2011 guideline mentions communication with parents and family but does not define how these conversations should take place. Additionally, the American Academy of Neurology has provided specific guidance on some of these complex issues.¹⁰ Another common concern highlighted was clarification regarding the need for two different attendings/services (e.g. neurology and critical care medicine or neurosurgery and critical care medicine) to determine brain death. The 2011 guideline indicated who may be qualified to determine brain death, but did not stipulate competency. Individual state laws, hospital policy, and credentialing determine competency and if specialists from different services are required to determine brain death. This concern highlights the need for physicians to become familiar with their state law and hospital policies regarding brain death. Despite a reduction in ancillary study use, incorrect interpretation continues to lead to inaccurate BDD. This finding highlights that while pediatric BDD is a clinical diagnosis, intensivists are dependent on specialists when ancillary studies are interpreted. Special attention to this issue should be acknowledged in future guideline revisions.

The current pediatric brain death guideline requires that medical conditions that can interfere with the clinical assessment be excluded. Specific laboratory testing is determined by the treating physician based on the disease process. Treatment of traumatic brain injury has continued to evolve. Pharmacologic agents to induce osmolar therapy are commonly employed to reduce the impact of cerebral edema in traumatic or post-anoxic brain injury.^11,12 Hypernatremia may result from medical treatment or diabetes insipidus in patients with severe brain injury.¹¹ The guideline stated reversible conditions such as severe electrolyte imbalances (i.e. hypernatremia) be identified and treated before evaluation of brain death. A specified range was not provided because no scientific studies exist providing guidance on acceptable serum sodium levels for brain death testing. In our study, serum sodium levels were the most common laboratory values reviewed. Levels between 136 and 155 mEq/L were reported to be acceptable prior to initiating brain death testing by the majority of the 2020 survey participants. Physician judgment plays a vital role in the evaluation of whether metabolic abnormalities preclude pediatric BDD. Future guideline revisions should continue to encourage physician judgment and stress normalization of electrolytes within a reasonable range and obtain drug testing/drug levels when indicated. Ancillary studies can be pursued in circumstances where the patient’s etiology for coma is uncertain, metabolic disturbances cannot be corrected, or interference from pharmacologic agents may affect the clinical examination.

Limitations

There are several limitations to this study. Survey return rates tend to be notoriously low and represent those respondents that have an interest in participating in the survey. This may create a reporting bias by physicians who support the revised pediatric brain death guideline or who are skilled in determining brain death in pediatric patients. Responding survey participants may not be fully representative of all physicians who perform pediatric brain death examinations creating bias. It is also unknown if the makeup of membership to the pediatric section has changed with fewer physician members or more international physicians resulting in fewer completed surveys. Although the range in years of practice is similar, survey participants in 2013 may no longer be practicing medicine or may not have had the opportunity to respond to the follow up survey. Pediatric intensivists who began their career after the first survey was completed may not have extensive experience determining brain death in children and may lack awareness of the previous 1987 guideline. A number of participants did not respond to all questionnaire items completely accounting for the varying n values noted throughout the tables. As a typical survey study, the results should be interpreted with caution due to multiplicity. The survey itself was not validated, and as with any survey, the wording of the questions could potentially bias answers provided by participants.

CONCLUSIONS

Prior to the revised guideline, pediatric BDD had been variable. This study demonstrates that after implementation of the revised 2011 guideline to determine pediatric brain death with a standard checklist and specific direction regarding clinical examination, apnea testing, and use of ancillary studies, survey participants reported increased clarity and consistency, and there were fewer reported cases of inaccurate determination or diagnostic error when determining brain death in children. Findings from our study indicate that in clinical practice there is no significant deviation from the minimum requirements to determine brain death in children as outlined in the 2011 guideline. Hospital policies and individual state requirements may create variation to meet standards beyond the minimum requirements to determine brain death in children. The checklist has helped define and reinforce a systematic approach to the process of determining and documenting brain death.