Variability in Pediatric Brain Death Diagnostics and its Influence on Pediatric Organ Donation By Jordan Fournier May 1 st, 2018 ANP 835

Transcription

1 Variability in Pediatric Brain Death Diagnostics and its Influence on Pediatric Organ Donation By Jordan Fournier May 1 st, 2018 ANP 835 Abstract For most of history, there has been one definition of death: cardiorespiratory. Cardiorespiratory death is indicated when the heart stops beating, however recently a new definition has been added to encompass death as also being the ceased function of the brain and brainstem. This is known as brain death. Due to the recent expansion of the definition of death, there is insufficient knowledge of how to accurately diagnose the ceased function of the brain. Guidelines have been published, however many institutions use their own discretion of diagnosis. Variability of the examination decreases confidence within society and families of the patient and their acceptance and attitude of brain death. Decreased confidence in turn, decreases the consent for pediatric organ donation, which is in high demand. Pediatric organs are size dependent and therefore needed specifically for pediatric patients on the waitlist. Without the correct size, pediatric patients can t obtain their needed organ. By decreasing brain death examination variability through regulation and policy, confidence in and acceptance of brain death will increase. This increase will also aide in the increase of pediatric organ donation. Introduction The acceptance and understanding of brain death is unsymmetrical within the hospital setting between staff, family, and outside organizations. Such difference has led to variability within the diagnostics of brain death, which can have serious and long lasting effects. Death has been described by the 1987 Task Force Recommendations, along with The Uniform Declaration of Death Act (Verheijde, 2008) as An individual who has sustained either (1) irreversible

2 cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brainstem, is dead (Nakagawa, 2011). Brain death was formally published in 1968 by the Harvard Criteria as an irreversible coma (Fackler, 2011). Harvard s publication authorized the use of a neurological-based death definition to enhance the definition of death from strictly cardiorespiratory death, where the heart stops beating, to include both cardiorespiratory death and brain death (Fackler,2011). Unlike cardiorespiratory death, brain death can present families with deceived information. This is because the patient is still warm to the touch and has a beating heart, however the individual has profound neurological loss to the extent where all neurological brain function has ceased and is irreversible (Macauley, 2011). The patient way appear alive to the eye, however they are not neurologically functioning. One aspect that is closely connected to death, and is increasing due to the enhanced death definition, is organ donation and transplantation from pediatric brain dead patients. Pediatric organs are in high demand, but in drastically low supply. Pediatrics, ages birth to 17 years of age, account for 2-3% of the national waiting list for a transplant (Committee on Hospital Health Care, Section on Surgery, and Section on Critical Care, 2010). Pediatric organ donation becomes more complicated than adult donation, as organ size is crucial for this age range. The liver, heart, and lungs are all size dependent for pediatrics (Rodrigue, 2008). With more than 70% of the pediatric organ transplant wait list needing a liver, kidney, or bowels, the availability is drastically low (Committee on Hospital Health Care, Section on Surgery, and Section on Critical Care, 2010). The addition and legal acceptance of brain death to the overarching declaration of death has influenced the availability of pediatric organs for transplantation. In the following paper, the variability of brain death diagnostics with an emphasis on pediatric patients will be discussed. Due to the limited information, available on brain death

3 examinations and declaration, especially pertaining to pediatric patients, much of the criteria for both adults and pediatrics are identical. In the sense of pediatrics, unless otherwise stated, the material adheres to patients greater than 37 weeks gestational to 18 years of age (Nakagawa, 2011). Variability within death diagnostics can issue ethical concerns and have extensive effects on the patient and family. This variability also has an influence on organ donation. The concerns I will address include (1) the variability within pediatric brain death diagnostics and their impact, (2) regulation of examination protocols, and (3) projected solutions decreasing variability while increasing pediatric organ donation. With a regulated pediatric brain death diagnostic protocol, pediatric organ donation should be positively influenced and increase, due to the knowledge, reliability, and understanding of the procedures and brain death itself. Brain Death Examination The diagnosis of brain death has experienced a multitude of variability since the definition has been published in This variability can be attributed to the overarching examination guideless and lack of concrete regulation and policy surrounding the procedure. The American Academy of Neurology (AAN) published an updated clinician summary on determining brain death in adults, however many hospitals and institutions have never adopted any form of the published guidelines, as they do not reflect an official policy to adhere by. Therefore, many guidelines being used reflect the institution or hospital itself (Lynch, 1992). This concludes that the examination procedures are at the institution s discretion. The process of brain death certification is as followed and determined by the Uniform Declaration of Death Act (Goila, 2009) (Verheijde, 2008). 1) Medical History and physical examination in which provides a clear analysis of the situation.

4 2) Exclusion of confounding conditions such as, but not limited to: a. Shock b. Hypothermia c. Additional drugs in the body 3) Complete neurological examination including: a. Absence of spontaneous movement b. Absence of pupillary reflex c. Absence of corneal, cough, and gag reflex d. Absence of oculovestibular reflex using 20-50ml of ice water e. Failure of increased heart rate by 5 beats per minute of more after administration of 1-2 mg of atropine intravenously f. Absence of respiratory efforts in presences of hypercarbia 4) Apnea test 5) Brainstem reflexes Separate guidelines for the determination of pediatric brain death have been published by a multisociety task force. The development of distinct guidelines between adults and pediatrics arise from the President s Commission s lack of addressing specific and adequate guidelines for pediatric patients (Nakagawa, 2011). The guidelines have been obtained from a Pediatric Brain Death Guidelines tool kit used to aide clinicians in diagnosis (see Appendix 1) (Nielsen, 2015). Distinct guidelines are important due to the physical and psychological difference between pediatrics and adults. Declaration of death is endowed after two neurological exams and an apnea test are confirmed by separate clinicians trained in neurocritical care, as adhering to a conformation of brain death (Nakagawa, 2011).

5 One specific category of tests within the declaration guidelines that has the most variability, are ancillary tests. Ancillary tests are additional medical tests used in clinical settings, as an additional source for the correct diagnosis of brain death. A clinical examination has the possibility of not being performed if there is a prior medical condition, confounding medication effects, in adequate hemodynamics and oxygenation, or validity concerns (Lewis, 2017). Additionally, ancillary tests may be performed under clinician s personal preference, institutional requirement, or as an additional convincing factor for the family (Lewis, 2017). Ancillary tests are typically done in conjunction with the clinical examination for pediatric patients to ensure a correct diagnosis. The following are a description of the recommended ancillary tests, and concerns, that are used to diagnose brain death. Guidelines promote the use of cerebral angiogram, nuclear blood flow, and electroencephalogram examinations due to the extensive performance and interpretation variability with other available test options (Lewis, 2017). 1) Cerebral Angiogram a. This test is invasive and transport to administration, along with the materials, can cause risks. Depending on the technique used, image variability is common. 2) Nuclear Blood flow a. If the patient has an anoxic injury or skull defect, interpretation can be challenging. 3) Electroencephalogram (EEG)

6 a. This test looks for electrical activity within the brain, and due to the hospital environment and the multitude of electrical devices by the patient s bedside, interpretation of the test results can be difficult. Ancillary exams indicate blood flow or brain activity that may not be observed within the clinical examination. It s important to note that ancillary tests are not needed for the diagnosis of brain death however, many are performed. The variability demonstrated in the administration of such tests can be critical. Brain death is the ceased function of the entire brain including the brain stem, however it is not the ceased function of every neuron within the brain (Lewis 2017). Thus, if the clinical examination affirms ceased function of brain activity, but an ancillary test is performed and shows any form of function, including neuron residuals, the patient is alive (Lewis, 2017). Results as such, can be deceiving to families and provide false hope of their child becoming neurologically active and conscious. Variability The variability shown through the ancillary tests alone is very concerning. With such variability within ancillary examinations, in addition to institutional variability and clinician preference, it s evident that the brain death criteria should be revised and regulated. The criteria revision and regulation will not only provide a legal platform for clinicians, but it minimizes the chances of misdiagnosis and extended family distress. Brain death examinations allow for a hard-clinical end-point to be established to end treatment (Clarke, 2016). For brain dead patients, technology is simply keeping them alive, and with a clear point for the removal of technology, such as life-support, it s benefiting the patient. The patient s dignity is preserved through brain death diagnosis (Clarke, 2016). Additionally, with long waiting periods for diagnosis, hospital costs can be significant, potential organs can be lost, and the extended period can be emotionally

7 tolling for the family (Chang, 2003). The examination of brain death is used to limit such burdens. Currently clinicians require consent for the administration of the apnea test, which as shown above, is a critical component of the brain death diagnostics. If the consent is denied then the family has almost entirely prevented the diagnosis of brain death (Richards, 2017). By preventing such diagnosis, the family is keeping their loved one on life-sustaining technology, hosting viable organs for transplantation, and using medical resources that could be allocated elsewhere. Clinicians in Nevada have found an arrangement to minimize the denied consent by using the term organ-sustaining treatment in which the statute requires healthcare facilities to inform families and surrogates that the costs of continued administration of organ-sustaining treatment may become the responsibility of the patient or her estate (Richards, 2017). This statue assists clinicians in the ability to perform the diagnostics, however this statute is not implemented in all facilities. Organ-sustaining treatment, life support, is not an inexpensive process. In 2005, for patients considered adults, 18 years of age or above, the costs for life support in an intensive care unit (ICU) was approximately $1, per day (Dasta, 2005). Costs have since increased for life-substaining treatment. In 2013, a 13 year old brain dead patient, Jahi McMath, was held on life-support during a court case, in which the descision to keep McMath on life-support and continuing care was in discussion. During this time costs for maintaining life-support in ICU ranged from $2,000-$4,000 per day (Ehrenfreund, 2013). The costs for maintianing life-support are only increasing. According to the Clinical Report produced by Thomas Nakagawa and others, a review of 171 children who were diagnosised with brain death, 46% (79 children) in which continued life-support after the declaration of brain death died from cardiac arrest on

8 average of only 22.7 days following diagnosis (Nakagawa, 2011). By using the 2013 statistic, life-substaining costs in ICU for a brain dead patient in which died 22.7 days after diagnosis would be ranging from $45,400-$90,800. By creating a concreate end-point for life-substaining treatment, families would be liberated from an extensive medical costs, in addition to extended emotional grief. In addition to concerns of variability, a regulated and revised policy for pediatric brain death diagnosis will aid in the complexity of the affirmation. Since pediatric patients haven t fully matured there is a maturation-dependent factor that must be accounted for in the examination, which increases the complexity (Lynch, 1992). Araki Takashi stated multiple reasons for the revision of pediatric brain death guidelines when studying pediatric brain death in Japan. His reasons are as followed, (1) Low absolute number of pediatric brain death cases, (2) inconsistent sensitivity and specificity of ancillary tests, (3) unclear medical foundations for establishing age-specific criteria, (4) lack of brain death determination criteria for neonates, and (5) accumulation of problems such as chronic brain death. (Araki, 2016). It s crucial when handling life and death to have specific and ethical guidelines. When the exams are at the discretion of institutions or clinicians the diagnosis can be subjective or lead to false results. Organ Donation The regulations of guidelines for pediatric brain death can also aide in the availability of pediatric organs allocated for donation. The field of pediatric transplantation is limited due to the scarcity of organs; however, children need them (Rodrigue, 2008). Due to consent conformation from parents for pediatric organ donation, timing, sensitivity and knowledge are critical factors for clinicians and staff to be aware of. The involvement of the child s healthcare team is

9 drastically influential to the parent s decision to donate (Rodrigue, 2008). A survey completed by James R. Rodrigue showed that there was an increase in parent consent when the initial approach transpired before the declaration of death, a process known as decoupling (Rodrigue, 2008). It was also important for the information and staff to be presented in a way that was sensitive to the family and gave them sufficient time to discuss and decide donation (Rodrigue, 2008). Pediatric organ donation consent was also affiliated with the attitude surrounding brain death. If the healthcare team and surrounding community had a positive attitude towards brain death, withdrawal of life-support, and organ donation, families felt more conformable with the process (Cohen, 2008). Due to the extensive grief and confusion that correlates with pediatrics and brain death, it s essential for the patient s healthcare team to understand the family s needs, and to be sensitive to their situation. Physician s and staff are surrounded continuously with relative and similar cases, but the families do not go through this daily. This is a hard and emotionally tolling process for them. Many individuals are concerned with physicians declaring brain death only for the allocation of organs, however the physician clinically examining the patient does not have any partnership with the transplantation team (Kaufman, 1989). In addition physicans are obligated by policy to report the potential for an organ donation immediately if they feel the case is appropriate (Kaufman, 1989). The individual in which discuss brain death, after the physician has reported the potential procurement for organs. is from an organ procurement organization (OPO) which are members of the Organ Procurement and Transplantation Network (OPTN) and United Network for Organ Sharing (UNOS) (Committee on Hospital Health Care, Section on Surgery, and Section on Critical Care, 2010). The individuals in which discuss organ donation with the families have a background specifically in organ procurement. Pediatric brain dead

10 patients only become eligible for donation after the determination of brain death, however early discussion of donation allows the family time to discuss and determine if that is their decision (Committee on Hospital Health Care, Section on Surgery, and Section on Critical Care, 2010). Addressing the family early gives ample time to obtain additional information about pediatric organ donation that was not available earlier. Conclusion Due to the high demand for pediatric organs and the low availability, regulating the diagnosis of pediatric brain death can have considerable influence. By having standardized guidelines there is no variability within the diagnostics. Institutions and physicians are not at their own discretion of which examinations to use, this in turn can decrease chronic brain death diagnostics and false results, while increasing confident and correct diagnosis. Due to brain death being a confusing and not widely accepted definition of death, having the confidence and knowledge of brain death is key in its acceptance within society and especially by the family. Confidence in the diagnosis of brain death will also increase with regulation, this confidence is not only beneficial to the clinicians but also to the grieving families. There will be a clear and concise point to end futile care for brain dead patients, giving families the time for bereavement, reducing hospital costs, and reallocation of resources. Variability can be decreased by implementing guidelines as official policies that institutions must adopt. Through additional research of pediatric physiological maturity, especially pertaining to the brain and skull, adequate examination can be determined for the best diagnosis. Regulation of ancillary tests are crucial for decreasing the variability of brain death declaration and improving the interpretations of the tests themselves. By using examinations in which have a high rate of misinterpretation, confidence in the diagnostics quickly decreases.

11 With increased confidence and decreased variability, families can see a reinforcement and positive attitude towards brain death, which in turn can increase their willingness to donate their child s organs. Increased pediatric organ donation will not only expand the field of pediatric organ transplantation, but will also aide the vast number of pediatric patients on the waitlist. The regulation and standardization is crucial to decrease variability in brain death diagnostics. By decreasing variability, the acceptance of brain death as a true form of death will increase, along with the consent for pediatric organ donation. Both the knowledge of brain death, and field of pediatric organ transplantation will expand, thus expanding the healthcare field and confidence in clinicians.

12 Appendix 1- Brain Death Examination for Infants and Children Check List

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