The American Academy of Neurology believes that doctors have the right to do 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.
From the article:
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. Not everyone agrees, nor do experts agree on how exactly such evaluations should be performed. So, 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”).
Most neurologists (78%) and pediatric neurologists and intensivists (72%) do not feel consent is necessary before testing for DNC. 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. In 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. Recently, Nevada became the first state to revise its Determination of Death Act to expressly indicate that determination of death is “a clinical decision that does not require…consent.” In 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 Tasker have 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.
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 continued life. Another justification for testing without consent is a professional responsibility to provide appropriate care based on an accurate diagnosis. However, this responsibility does not permit physicians to overrule parental refusals of diagnostic tests unless the refusal results in clear, preventable, and imminent harm to the child. Finally, others may argue that permitting refusal of formal DNC testing may overwhelm limited intensive care resources with individuals who likely meet the definition of DNC, potentially limiting access to care for others. Although these are legitimate concerns, they are not supported by reported experience in states or countries with limited acceptance of brain death. Even if parental refusal of formal DNC 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…
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. This 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…
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.
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.
Finally, providers should consider the importance of time. Critically ill children depend on the rapid assessments, decisions, and interventions of the PICU team for survival. Rapid decision-making is the norm. This case highlights the importance of recognizing when it is 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.
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…
The concept of brain death has undergone a surprising trajectory in the public mind. When first 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 in The New Yorker magazine raised questions about whether people who meet legal standards for brain death are in fact dead.
The current controversies reflect both shifts in values and technological advances in intensive care. When brain death was first 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 Shewmon 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.