Can a Parent Refuse the Brain
Death Examination?
Brittany M. Lee, MD,aAmy Trowbridge, MD,a,b,cMacallagh McEvoy, ARNP,bAaron Wightman, MD, MA,a,b,cStephanie A. Kraft, JD,a,b,c Jonna D. Clark, MD, MAa,b,c
abstract
The American Academy of Neurology believes that doctors have the right todo tests to evaluate whether a patient is brain dead even if the family does not consent. They argue that physicians have“both the moral authority and professional responsibility”to do such evaluations, just as they have the authority and responsibility to declare someone dead by circulatory criteria. Not everyone agrees. Truog and Tasker argue that apnea testing to confirm brain death has risks and that, for some families, those risks may outweigh the benefits. So, what should doctors do when caring for a patient whom they believe to be brain dead but whose parents refuse to allow testing to confirm that the patient meets neurologic criteria for death? In this article, we analyze the issues that arise when parents refuse such testing.
The American Academy of Neurology does not believe that obtaining informed consent before performing a brain death evaluation is necessary. Instead, they argue that physicians have “both the moral authority and
professional responsibility”to do such evaluations, just as they have the authority and responsibility to declare death by circulatory criteria.1Not everyone agrees,2nor do experts agree on how exactly such evaluations should be performed.3So, what should doctors do when caring for a patient whom they believe has died but whose parents refuse to allow testing to confirm death by neurologic criteria (DNC)? In this article, experts from intensive care, bioethics, and palliative care analyze the issues that arise when parents refuse formal testing to declare death by neurologic criteria (“brain death”).
THE CASE
E.C. was a 16-year-old boy with depression admitted to the PICU with multisystem organ failure after cardiac
arrest after a self-inflicted strangulation injury. On admission, his examination demonstrated severe anoxic brain injury, with absent cranial nerve reflexes except for spontaneous respiratory drive. He had acute kidney injury, lactic acidosis, severe hypoxemic respiratory failure requiring
mechanical ventilation, bilateral pneumothoraces requiring chest tubes, and hypotension requiring vasoactive support. While allowing for peak cerebral edema to evolve over the next 72 to 96 hours, E.C.’s multiorgan system failure improved, permitting removal of chest tubes and
discontinuation of vasoactive agents. He also developed movement of his upper extremities with stimulation, which his parents described as a“thumbs-up”sign. Feeling that their son was“in there”and that the improvements were a sign from God that he would recover, his parents asked to continue ongoing medical support to allow time for God’s plan for their son to become more evident.
After 2 weeks, however, E.C.’s neurologic examination showed no
aDepartment of Pediatrics, School of Medicine, University of Washington, Seattle, Washington;bSeattle Children’s Hospital, Seattle, Washington; andcTreuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, Seattle, Washington
Dr Lee conceptualized the article, drafted the case summary, and drafted her commentary; Drs Trowbridge and Wightman conceptualized the article and each drafted their respective commentaries; Dr Clark, Ms McEvoy, and Ms Kraft each drafted their respective commentaries; and all authors reviewed and revised the manuscript in its entirety, approved thefinal manuscript as submitted, and agree to be accountable for all aspects of the work.
DOI:https://doi.org/10.1542/peds.2019-2340 Accepted for publication Sep 4, 2019
Address correspondence to Brittany M. Lee, MD, Seattle Children’s Hospital, 4800 Sand Point Way NE, Mail Stop MB.8.501, Seattle, WA 98105. E-mail: [email protected]
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2020 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE:The authors have indicated they have nofinancial relationships relevant to this article to disclose.
FUNDING:No external funding.
POTENTIAL CONFLICT OF INTEREST:Dr Wightman is a member of the United Network for Organ Sharing Ethics Committee; his contribution reflects his own views and does not represent the views of the United Network for Organ Sharing. Dr Clark serves as a pediatric medical advisor for LifeCenter Northwest, which is the local organ procurement organization. Her contribution reflects her own views and does not represent the views of LifeCenter Northwest; the other authors have indicated they have no potential conflicts of interest to disclose.
improvement with no evidence of brain function. He remained unresponsive to any stimuli with absent cranial nerve reflexes and developed diabetes insipidus, which is consistent with pituitary
dysfunction. He lost spontaneous respiratory drive and remained dependent on mechanical ventilation. His upper-extremity movements were found to be consistent with a spinal reflex by the neurology team. Worried that he had died, the intensivist informed E.C.’s parents that the next step would be to proceed with formal clinical testing to assess brain function, including 2 clinical examinations and apnea tests. His parents were told that if the testing demonstrated the absence of all brain function, then E.C. had died. On hearing this explanation, his parents requested that these tests not be performed because they believed he was still alive and“no one except God would decide”their son’s journey.
The critical care team consulted the bioethics team to ask if the parents have the authority to refuse clinical testing for DNC. The team also worried that if the clinical tests demonstrated that he had died, his parents would continue to request ongoing medical and technological support.
STEPHANIE KRAFT, JD, AND AARON WIGHTMAN, MD, COMMENT
The severe injury of a child
represents a tragedy for all involved. In E.C.’s case, the clinical team believes that E.C. may have died, but his parents request ongoing medical interventions. Do parents have the right to refuse formal testing for DNC? This question is particularly important because families have no legal right to demand“treatment” after a patient is declared dead. But until the patient undergoes formal testing for DNC (or dies by cardiopulmonary criteria), they remain legally alive, and the parents as legal guardians have the right to
make medical decisions on their behalf.4
Most neurologists (78%) and pediatric neurologists and
intensivists (72%) do not feel consent is necessary before testing for DNC.5,6 But the law varies from state to state. One Virginia court ruled that parental consent was not necessary to perform testing, whereas courts in Kansas and Montana ruled in favor of a consent requirement.7–9In Montana, the court found that testing for DNC is
a“medical procedure with significant repercussions”that patients (or their surrogates) have a fundamental right to consent to or refuse, also noting that the state legislature’s silence regarding the consent requirement could not be interpreted as permission to proceed without consent.10,11Recently, Nevada became thefirst state to revise its Determination of Death Act to expressly indicate that determination of death is“a clinical decision that does not require…consent.”10,12In sum, states are split regarding the legality of physician testing for DNC without consent.
The requirement to obtain informed consent before performing medical interventions stems from the ethical principle of respect for persons. In limited situations, consent may be assumed, including for emergent care or specific, routine physical
examinations or tests (such as blood counts or radiographic imaging), when a patient provides general consent for care within an inpatient visit. In these situations, proceeding without express consent is supported by duties of beneficence because it is assumed to be in the patient’s interest to receive care in an emergency or undergo diagnostic testing to aid in treatment or prognostication. Clinical testing for DNC, however, often takes place in a controlled environment, and reasonable people may disagree about whether determining a patient has died is in that person’s interest. As Truog and Tasker2have argued, if
we cannot assume that a patient would want a procedure, we are obligated to seek informed consent.
If parents refuse testing for DNC, their child is presumed to be alive, and the ethical justification for overruling their refusal is unclear. The formal clinical test provides no direct medical benefit to the child, only the possibility of a legal determination of death, resulting in permissible unilateral withdrawal of mechanical support. Therefore, individualistic standards, such as the best interest standard or harm principle, do not justify overruling a refusal because it is neither clear that testing to declare DNC is in a child’s best interest nor that a profoundly impaired child whose death has not been confirmed is harmed by continued existence compared with the alternative.13
There are a number of bases for claims that parental consent is not necessary. One is that continued provision of mechanical support reflects futile or medically
inappropriate care. We believe that mechanical support is not futile if the patient remains legally alive and the family’s goal of treatment is
testing did result in waste of limited resources, policies about who should be assessed and how their surrogates should be approached, including whether consent is required, should be developed at the state or national level rather than applied in an ad hoc manner at the bedside.
This analysis suggests that there is no ethical justification for physicians to unilaterally perform testing for DNC against parental wishes. In some states, as noted, doctors have the legal right to perform such testing. However, having a legal right does not mean that it is ethical. Physicians should respect parents’refusals and attempt to understand the reasoning for refusal. The pursuant discussions may reveal that the family has an underlying concern about the diagnosis of brain death itself, some degree of mistrust in the process, or perhaps a need for more time to come to terms with their child’s prognosis. In any case, the process of informed consent may serve a broader function beyond merely obtaining permission to proceed with formal testing for DNC. E.C.’s case and others like it underscore the importance of considering consent as a mutual, dialectic process that builds on and contributes to the patient-family-doctor relationship. Although these cases are tragic and challenging for all involved, optimal communication, empathy, and time may lead to resolution.
BRITTANY LEE, MD, AND JONNA CLARK, MD, COMMENT
This challenging case highlights a modern dilemma in pediatric critical care. In the United States, irreversible coma wasfirst defined as “a new criterion for death”in 1968 for 2 reasons: (1) to ethically justify the removal of the ventilator and (2) to establish criteria to ethically permit organ donation from patients with severe and irreversible brain injury.18Subsequently, in 1981, the Presidential Commission clarified 2
legal definitions for death: (1) death by cardiopulmonary criteria and (2) brain death, which is based on the absence of all brain function, as determined by medical criteria. However, similar to E.C.’s parents, when a child has a strongly beating heart and the chest rises and falls with the ventilator, many families have difficulty conceptualizing that their child may have died. We explore how this discrepancy in viewpoints regarding death may lead to conflict and how intentional and thoughtful care may avert it.
What is at the root of E.C.’s parent’s request to defer testing for DNC? For some families, this request may stem from mistrust or a breakdown in communication with the clinical team regarding the child’s prognosis.19If trust is breached, the family may feel that the medical team is“giving up” on their child. Furthermore, their perception may be rooted in cultural, spiritual, or religious beliefs
surrounding death, which may challenge the medical and legal definition of DNC.19–21E.C.’s parents’ request to continue to medically support their child highlights their spiritual basis of hope and strong belief that he remains alive.
Importantly, E.C.’s parents’request to avoid testing reveals their desire for more time with their son, which is not unique to this clinical scenario because most families who are grappling with the loss of their child request more time. For health care providers, DNC is more definitive than other diagnoses and has substantial legal and financial implications. Therefore, a delay in testing has at least 3 important consequences that may place strain on the physicians’obligations. First, conflict may arise between the family, intensivist, and other members of the health care team. The moral distress that builds when caring for a patient who has potentially died can be overwhelming for nurses and ancillary staff who spend long periods
of time at the bedside.19,22Second, as stewards offinite health care resources, physicians may feel distress when directing limited resources toward a child who will not recover. Finally,financial
reimbursement from insurance companies is discontinued once a patient is declared deceased. If testing is delayed, insurance companies may question providing ongoing coverage if the neurologic examination remains dismal.
To balance these competing obligations, the physician may offer E.C.’s parents a“finite-goal
accommodation” to allow additional family members or friends to visit or a“time-limited trial” to monitor for any signs of neurologic recovery.19,20 Additional time allows the medical team to build compassion for the family as they learn more about the child as a person rather than build frustration toward a situation that is challenging. Furthermore, E.C.’s parents may recognize that their son will not recover neurologic function, leading them to accept compassionate extubation. Delaying testing does not eliminate the competing challenges described earlier but instead offers a compromise, potentially reducing staff moral distress and concerns regarding inappropriate allocation of resources and limiting further escalation of conflict between the clinical team and family.
With the diagnosis of DNC, clear, compassionate, and consistent communication across all disciplines is essential. Careful choices of phrases, such as“when the ventilator delivers air to his lungs”instead of “when he takes a breath,”
“technology”instead of“life support,” and“death”rather than“brain death,” can help maintain clarity.
a sign of improvement, whereas the brain may not. Early in the hospital course, describing the difference between a purposeful movement (such as reaching for the breathing tube) versus a spinal reflex (such as “thumbs-up”sign or tripleflexion of the lower extremity), in which spinal reflexes are no longer inhibited by the brain, may add clarity for families. Furthermore, family presence during clinical testing may improve
understanding of the severity of brain injury.23Finally, consistent clinical testing practices within the medical community are absolutely essential, especially because declaring death is definitive.24
For additional support during a time-limited trial before testing, eliciting the expertise of consulting services, including the bioethics consult and palliative care teams, may be beneficial. Chaplains may help align with a family’s faith and use religious guidance to support families. Social workers may provide counseling, help facilitate visitation from other family members and friends, and ensure that the family has their basic needs met to optimize their decision-making capacity. In addition, eliciting support from those whom the family trusts, including community or spiritual leaders external to the institution, may be important. Often, with time and the inclusion of consultants, trust may grow, and the family may come to feel honored and supported in these tragic circumstances.
Even so, some families may continue to refuse testing. To address these situations, hospitals should allow for accommodation of families when necessary.1This approach may require additional interventions, including tracheostomy and
gastrostomy tube placement, transfer to a different location, and additional support for the health care team. Those are worth the effort to demonstrate sincere respect, maintain trust, and provide the
compassionate care that all children and families deserve.
MACALLAGH MCEVOY, ARNP, AND AMY TROWBRIDGE, MD, COMMENT
As societal consensus about brain death fragments, we can expect more disputes between medical teams and families.25Pediatric palliative care can offer several techniques that may minimize additional psychological trauma to families, improve collaboration, and enhance support through grief. Critical care teams could consider incorporation of these key palliative care principles and core skills to challenging cases like E.C.’s.
A foundational element of palliative care is the interdisciplinary approach: intensive collaboration of members with differing expertise to create open communication and holistic support. Many medical teams use a multidisciplinary model, in which different disciplines operate independently and information is shared within the medical chart or in meetings. In contrast, an
interdisciplinary approach allows multiple providers to hear and explore the family’s perspective simultaneously and develop a more comprehensive understanding that informs the medical plan.26It ensures that conversations include crucial information sharing on the part of the team as well as exploration of the critical elements that inform a family’s experience of a traumatic medical event.
A palliative approach includes multiple assessments that could guide how best to approach the process of brain death examination for a particular family. Exploring the family’s understanding of their child’s disease and prognosis may uncover knowledge gaps or concerns that should be explored further. It is critical to understand how a family’s faith, culture, and personal belief system impact their comprehension of“brain death”and the child’s needs.
Understanding the values of a particular family as they relate to medical care in general, and brain death specifically, creates the opportunity for providers to develop a thoughtful medical approach. It is also essential to explore a family’s previous experience with serious illness to allow for a deeper understanding and insight into their emotional process and how they have navigated past traumas. The
foundation created by these
assessments can inform a thoughtful approach for communication and decision-making around testing for DNC.
The family’s choices in this case may relate to traumatic experiences in the past, either their own experiences or those of loved ones. Families may not always disclose past trauma or emotional stress that is present for them.27Providers should use a trauma-informed approach with families to avoid causing additional emotional stress related to the medical event or reactivation of past traumas.
Collaboration and relationship building are critical. Although medical teams may be limited by the
constraints of their institutional work structure, in cases such as this, continuity matters. A consistent care team allows one to build rapport and a trusting relationship. When this is not possible, we must provide a meaningful summary to colleagues of the emotional work and complex communication that has occurred as well as use the interdisciplinary approach to bridge the issue of continuity as much as possible for families.
time to slow down. Although examination for DNC may not be viewed as a decision from the physician perspective, many families recognize the timing of examination as a decision point. Allowing time for parents to process and ready themselves is sensible and may be necessary to absorb the diagnosis. A 2013 report from The Hastings Center asserts that requests for a delay in the declaration of death or in the discontinuation of
interventions are reasonable and should be accommodated if possible as a way to help loved ones with grief and bereavement.28
Although no amount of time takes away a family’s pain and grief, using an interdisciplinary approach centered on the unique needs of a family may strengthen the partnership between parents and medical teams to allow for space to move through the challenges of brain death examination.
Time, continuity of relationships, and an interdisciplinary approach can improve trust and collaboration such that both parties are able to hear and appreciate each other’s perspectives. With this approach, the relationship with the family is reframed from one that is focused on moving through examination and declaration of death to one that accounts for the needs of the individual family based on their lived experience.
DENOUEMENT
The team agreed to delay testing for a week per E.C.’s parents’request to allow them more time with their son and facilitate visits from other family members. Through building
a therapeutic alliance with the palliative and critical care teams, his parents ultimately agreed to formal testing for DNC. Approximately one month after he was admitted, E.C. was declared deceased. His parents grieved the loss of their beloved son and requested that their son be able
to give the gift of life through organ donation.
JOHN D. LANTOS, MD, COMMENTS
The concept of brain death has undergone a surprising trajectory in the public mind. Whenfirst proposed, it was widely accepted. By 1990, every state in the United States recognized brain death as an appropriate legal criterion for declaring a person dead. But the concept seems to be generating more controversy over time and moving from the pages of medical journals into the mainstream press. In 2018, a feature article inThe New Yorker magazine raised questions about whether people who meet legal standards for brain death are in fact dead.29
The current controversies reflect both shifts in values and
technological advances in intensive care. When brain death wasfirst conceptualized, patients who met neurologic criteria would quickly progress to circulatory death. That is no longer true. In some cases, their hearts and other organs continue to function normally. As Shewmon30 points out, patients who meet criteria for brain death can assimilate nutrients;fight infection and foreign bodies; maintain homeostasis; eliminate, detoxify, and recycle cell waste throughout the body; maintain body temperature; grow proportionately; heal wounds; exhibit cardiovascular and hormonal stress responses to unanesthetized surgical incision; gestate fetuses; and undergo puberty. Given the
contentiousness of the concept of brain death, it seems ethically appropriate to honor parents’ refusals of formal testing. To force such testing will ultimately erode people’s trust in doctors,
bioethicists, policy makers, and the legal system. As noted, most parents eventually accept testing and a diagnosis of brain death.
Accommodating the rare exceptions is a price worth paying to maintain public trust.
ABBREVIATION
DNC: death by neurologic criteria
REFERENCES
1. Russell JA, Epstein LG, Greer DM, Kirschen M, Rubin MA, Lewis A; Brain Death Working Group. Brain death, the determination of brain death, and member guidance for brain death accommodation requests: AAN position statement [published online ahead of print January 2, 2019; published correction appears inNeurology. 2019; 92(6):304].Neurology. doi:10.1212/ WNL.0000000000006750
2. Truog RD, Tasker RC. Counterpoint: should informed consent be required for apnea testing in patients with suspected brain death? Yes.Chest. 2017;152(4):702–704
3. Wahlster S, Wijdicks EF, Patel PV, et al. Brain death declaration: practices and perceptions worldwide.Neurology. 2015;84(18):1870–1879
4. Pope T. Brain death and the law: hard cases and legal challenges.Hastings Cent Rep. 2018;48(suppl 4):S46–S48
5. Lewis A, Adams N, Varelas P, Greer D, Caplan A. Organ support after death by neurologic criteria: results of a survey of US neurologists.Neurology. 2016; 87(8):827–834
6. Lewis A, Adams N, Chopra A, Kirschen MP. Organ support after death by neurologic criteria in pediatric patients.Crit Care Med. 2017;45(9): e916–e924
7.In re Lawson v. VCU Medical Center, No. CL16-2358 (13th Cir. Va. 2016) (order)
8.Shively v. Wesley Medical Center, No 06-96650-A, 2006 WL 2922599 (Kan. 2006)
9.In reThe Guardianship of A.C., No. DG-16-08 (9th Dist. Mont., Sept. 26, 2016) (order)
11. Pope TM. Brain death forsaken: growing conflict and new legal challenges.J Leg Med. 2017;37(3–4):265–324
12. Nev Rev Statx451.008 (2017)
13. Robertson JA. Involuntary euthanasia of defective newborns: a legal analysis.
Stanford Law Rev. 1975;27(2):213–269
14. Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention.
Theor Med Bioeth. 2004;25(4):243–264
15. Wilkinson D, Savulescu J.Ethics, Conflict, and Medical Treatment for Children: From Disagreement to Dissensus. London, United Kingdom: Elsevier Limited; 2019
16. Muramoto O. Informed consent for the diagnosis of brain death: a conceptual argument.Philos Ethics Humanit Med. 2016;11(1):8
17. Son RG, Setta SM. Frequency of use of the religious exemption in New Jersey cases of determination of brain death.
BMC Med Ethics. 2018;19(1):76
18. A definition of irreversible coma. Report of the ad hoc committee of the Harvard Medical School to examine the definition of brain death.JAMA. 1968;205(6):337–340
19. Macauley R. Death and organ donation. In:Ethics in Palliative Care: A Complete Guide. 1st ed. New York, NY: Oxford University Press; 2018:425–448
20. Flamm AL, Smith ML, Mayer PA. Family members’requests to extend physiologic support after declaration of brain death: a case series analysis and proposed guidelines for clinical management.J Clin Ethics. 2014;25(3):222–237
21. Morioka M. Reconsidering brain death: a lesson from Japan’sfifteen years of experience.Hastings Cent Rep. 2001; 31(4):41–46
22. Bosek MS, Anderson JA, Vernaglia LW, Morrigan SP, Bard TR. Refusal of brain death diagnosis.JONAS Healthc Law Ethics Regul. 2007;9(3):87–94
23. Tawil I, Brown LH, Comfort D, et al. Family presence during brain death evaluation: a randomized controlled trial*.Crit Care Med. 2014;42(4): 934–942
24. Greer DM, Wang HH, Robinson JD, Varelas PN, Henderson GV, Wijdicks EF. Variability of brain death policies in the United States.JAMA Neurol. 2016;73(2): 213–218
25. Truog RD. Defining death-making sense of the case of Jahi McMath.JAMA. 2018; 319(18):1859–1860
26. Papadatou D, Bluebond-Langner M, Goldman A. The team. In: Wolfe J, Hinds P, Sourkes B, eds.Textbook of Interdisciplinary Pediatric Palliative Care. 1st ed. Philadelphia, PA: Elsevier; 2011:55–63
27. Marsac ML, Kassam-Adams N, Hildenbrand AK, et al. Implementing a trauma-informed approach in pediatric health care networks.JAMA Pediatr. 2016;170(1):70–77
28. The Hastings Center.Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life. 2nd ed. Oxford, United Kingdom: Oxford University Press; 2013:108
29. Aviv R. The death debate.The New Yorker. 2018;(93):1870–1879
30. Shewmon D. Session 5: response to the council’s white paper,
DOI: 10.1542/peds.2019-2340 originally published online March 27, 2020;
2020;145;
Pediatrics
A. Kraft and Jonna D. Clark
Brittany M. Lee, Amy Trowbridge, Macallagh McEvoy, Aaron Wightman, Stephanie
Can a Parent Refuse the Brain Death Examination?
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