Bioethics and the Family

“Medical technology has effectively created a twilight zone of suspended animation where death commences while life, in some form, continues.” —Justice William Brennan, 1990, regarding the case of Nancy Cruzan v. The State of Missouri

Introduction

Medicine’s purpose is to improve and lengthen life. When a person dies, therefore, medicine, in a sense, has failed. These simple truths lead to the far more complex and contentious question of when that failure has occurred. Philosophers, doctors, and lawyers have debated the question of how to define death for centuries. The answer has implications for political and medical issues such as organ donation.

In recent times, the issue has been complicated further by steady progress in medical technology. Some of this technology directly affects clinical actions to prevent and diagnose death by improving the assessment of it, inhibiting its progress, or altering the understanding of death altogether. Technologies that aid the ability to reverse certain pathologic processes and thereby help avoid raising the white flag to death, also pose the related question: Is use of these technologies in a particular patient futile? Futility is a highly debated concept that concerns irreversible states with depreciated quality or an inevitable progression to the end of life. The question of futility is both unavoidable, in that it affects decisions in critical care, and ethically complicated, because it raises questions of patient autonomy in end-of-life decision making and proper resource allocation.

Neuromonitoring encompasses a specific set of technologic tools that may have an effect on current clinical protocols for patients with critical neurologic illnesses. It is worth considering how the potential of these tools may be realized, and what ethical implications they may have in the intensive care unit (ICU). This chapter attempts to integrate medical and legal concepts into a discussion on the ethics of neuromonitoring in the ICU, specifically focusing on its role in cases of perceived medical or neurologic futility. We begin by defining human death, for to understand what is futile, one must understand what defines irreversible versus reversible neurologically. Table 8.1 lists definitions of states of consciousness and of death that are useful in this discussion. The text continues with the utility of neuromonitoring, specifically in preventing futile care and its limitations. Finally, ethical dilemmas in which families are engaged in conversations about the concepts of neuromonitoring, death, and futility are discussed.

Table 8.1

Relevant Terms to Discuss Human Life and Death

Term	Definition	References
Locked-in syndrome	Caused by a specific lesion in the pons. This syndrome consists of anarthria and quadriplegia with preservation of cognition and conscious awareness. Patients typically can respond only by blinking or with vertical eye movements. This syndrome must be distinguished from states of impaired consciousness (i.e., MCS, PVS, coma).
Minimally conscious state (MCS)	Identified by partial consciousness; sleep-wake cycles are present and the patient is able to localize both noxious stimuli and location of sound origin. Communication consists of intelligible verbalization and/or contingent vocalization.
Persistent vegetative state (PVS)	For at least 1 month no conscious awareness or communicative ability. Sleep-wake cycles, spontaneous, nonpurposeful movement, and stimulated arousal are present.
Permanent vegetative state	For at least 1 year after traumatic brain injury, or 3 months following ischemic injury (a), the patient has no conscious awareness or communicative ability. Sleep-wake cycles spontaneous, nonpurposeful movements and stimulated arousal are present (b).	(a) (b)
Coma	No conscious awareness, no communicative ability, and no sleep-wake cycles, with an inability to be aroused, even by noxious stimuli
Brain death	Equated with human death, but complicated by differing specifics in its definition, which depends on certain clinical diagnostic criteria
Irreversible	Two connotations: a strong one, which means that the function can never, not even in the future, be restored, and a weak one that means given the present tools and situation, function cannot be restored.
Permanent	“Lasting or intended to last or remain unchanged indefinitely” “Lasting or continuing without interruption”
Human	A being with specific traits identified as necessary and sufficient to declare one “human.” These traits span from human deoxyribonucleic acid (DNA) to conscious awareness, and are controversial.
Person	Often associated with traits specific to an individual human, but, in this paper, is equated with human.
Higher brain	“Capacity to think, to perceive and to respond” (a)	(a)
Higher brain	Sentience: “able to perceive or feel” (b)	(b)
Lower brain	The capacity to “integrate bodily functions”
Whole brain	Both higher and lower brain function

Brain Death: A Definition of Human Death

History

Although the terminology is misleading, brain death in the United States and most countries worldwide legally is equated to death of the person, not simply the death of the brain in an otherwise living person. The ambiguous nomenclature is an artifact of historical changes to clinically identify and define death ( Table 8.2 ). Before the 19th century, cessation of breathing, an easily observable function, equated human death. With the invention of the stethoscope in the 1800s, cessation of an audible heartbeat became the more considered definition. Once mechanical ventilation and resuscitation became routine in critical care ICUs in the 1950s and 1960s and so allowed for continued ventilation and circulatory support in patients in the absence of neurologic activity, * brain death arose as an alternative definition for death in patients after catastrophe and with absent neurologic function. The Harvard Commission clarified brain death criteria in 1968; although altered slightly on multiple occasions since (see for review), the criteria typically include coma, or total unawareness of external and internal stimuli; cranial areflexia; no spontaneous breathing (apnea); and a flat electroencephalogram (EEG), all observed in the absence of alternative explanations for the state, including intoxication, metabolic disorders, or hypothermia. Legal definitions depend on medical criteria, with vague terminology that allows room for these criteria to change and still coincide with the law. For example, as written by the American Bar Association (ABA) in 1975, “For all legal purposes, a human body with irreversible cessation of total brain function … shall be considered dead.” Specifics on what constitutes “irreversible,” “total,” and “function” were not provided; these are discussed in the following text.

Table 8.2

Important Events in Defining Human Life and Death By Chronologic Order

Year	Event	References
Pre-1800s	Death assessed by cessation of breathing, a readily observable event
1800s	Stethoscope is invented, leading physicians to identify death by the now-observable cessation of beating of the heart (“cardiac death”)
1950s	Mechanical ventilation and resuscitation are staples in the intensive care unit (ICU), leading physicians to shift to a neurologic base for death criteria (“brain death”)
1968	Harvard criteria are written and define brain death as (1) deep coma/no withdrawal to painful stimuli; (2) cranial and spinal arreflexia; (3) apnea when the ventilator is disconnected for 3 minutes; (4) a flat electroencephalogram (EEG); (5) exclusion of hypothermia and drugs as a cause for the findings; and (6) repeat examination in 24 hours.
1969	Luis Kutner conceived advance directives as a practical concept. He proposed legislature in 1968.
1971	Minnesota criteria are published. Criteria were similar to the Harvard criteria, except that a requisite flat EEG was omitted, the repeat examination was to occur at 12 hours, and an “irrefutable intracranial lesion” was identified in the patient.
1973	The case of Roe v. Wade ruled in favor of abortion before the fetus is “viable,” at which point the fetus is granted legal rights as a person, a living human. This had a great impact on how society viewed human life.
1973	The case of Edelin: A chief obstetrics resident performed a late second-term abortion at the request of a teenage girl and her mother. A 2-year trial culminated in Edelin’s conviction of criminal negligence (but notably, not murder or manslaughter) for not attempting to save a human life (the human fetus). His publicized conviction was given a few weeks before the Quinlan case began.
1975	The case of Karen Quinlan: A 21-year-old in New Jersey went into a coma, possibly induced by barbiturates. Family asked to withdraw mechanical ventilation, but the Catholic hospital, St Clare’s, would not. The New Jersey Supreme Court voted in favor of the parents’ wish, and 10 years later, Karen died. The American Medical Association (AMA) and the Catholic church at this time did not recognize a difference between actively killing and withdrawing life support. This case is monumental about decisions to dissociate life maintained by machines with life maintained by the person alone.
1975	Since there were several state statutes that defined brain death, the American Bar Association (ABA) announced in a position statement that: “for all legal purposes, a human body with irreversible cessation of total brain function…shall be considered dead.”
1976	Barry Keene got the first advance directive legislation passed and California became the first state to have such legislation (see “Natural Death Act”).
1976	United Kingdom code eliminated the repeat examination as necessary for brain death, and required a specific CO ₂level during an apnea trial rather than time to determine that the apnea test did not elicit medullary-driven respirations in the patient.
1977	U.S. Collaborative Study eliminated the apnea test and reintroduced a flat EEG and the repeat examination, now at 30 to 60 minutes.
1980	Uniform Determination of Death Act is approved for the United States. It holds that irreversible cessation of all functioning of the brain, of whole brain death, is human death, as is irreversible cessation of circulatory and respiratory function.
1981	U.S. President’s Commission (a) supported the Uniform Determination of Death Act (b) and reinstituted the apnea test and a repeat examination. Also only required cerebral blood flow assessment if necessary to determine brain death	(a) (b)
1983	The case of Elizabeth Bouvier: A 25-year-old paraplegic who also had little function in her arms, Ms. Bouvier sought suicide by self-starvation and became a media-popularized figure of a daunting struggle with life and wish for a right to die. She was force-fed by a court order, which she fought. At the end of the fight, the court sympathized with Ms. Bouvier and made the notable statement: “It is incongruous, if not monstrous for medical practitioners to assert their right to preserve a life that someone else must…endure. No criminal or civil liability attaches to honoring a competent, informed patient’s refusal for medical service.”
1990	AMA supports withdrawal of care for patients in Persistent Vegetative State (PVS).
1988	American Academy of Neurology (AAN) position on withdrawal of care in PVS cases, specifically noted that physicians, unless an advance directive requests otherwise, have no obligation to administer medical treatment, including artificial nutrition and hydration, if they cannot improve the patient’s neurologic state.
1989	The case of Carrie Coons: An 86-year-old in New York regained consciousness after being in a supposed state of irreversible unconsciousness (PVS). She “awoke” just before a court-ordered removal of her feeding tube took place. This laid doubt on the accuracy of the PVS diagnosis.	, Ch 1
1989	The case of Nancy Cruzan: The first “right to death” case heard by the U.S. Supreme Court. A patient in PVS, Cruzan’s family asked for her feeding tube to be removed but were voted down by the Missouri Supreme Court based on the role of the “parens patria” of the state or, the guardian of the incompetent, which must err on the side of life if it must err. The U.S. Supreme Court decided that there was no evidence that Ms. Cruzan would have wanted to endure what the state of Missouri was defining for her as her “life.”
1991	The state of New Jersey enacted a law that provided citizens with a religious exemption from brain death determination.
1995	AAN criteria published that eliminated a flat EEG as necessary to declare brain death, and added strict testing details for the apnea test, such as delivery of 100% oxygen to avoid harm from the test itself.
1990-2005	The case of Terri Schiavo: After suffering from a cardiac arrest, Ms. Schiavo was comatose, transitioning to PVS later. Her husband, based on his understanding of Ms Schiavo’s wishes, fought against her parents to have her feeding tube removed. The court voted in favor of removing the tube. The case reignited questions over what is sufficient to declare a being a living human, and how proxies should be identified for the neurologically incompetent.

A Closer Look at the Definition: “Total” and “Irreversible”

* Albeit in a disintegrated fashion, according to the 1981 President’s Commission Report.

Brain death carries a legal definition in accordance with whole brain theorists, or those persons who believe that the irreversible cessation of both higher and lower brain function are individually necessary and together sufficient to declare someone a deceased human. Higher and lower brain functions are defined, respectively, as the “capacity to think, to perceive and to respond” (cortical function) and the capacity to “integrate bodily functions” (brainstem function). Several authors support “whole brain” death criteria and claim its conservative nature is necessary to protect against misdiagnosis of a person as brain dead who actually is transitioning to an improved neurologic state or has the potential for such a change. To fulfill these criteria, destruction of neuronal tissue must be so widespread that there is no doubt the person’s state is irreversible.

Irreversible is itself an inconclusive term, with both strong and weak interpretations, as noted by Bernat. According to Cole, under the stronger definition, irreversible means that something will not be recovered now and cannot ever be recovered later. The weaker definition refers to presently unrecoverable objects or states that may or may not be recoverable in the future (with better technology). Aulisio et al. suggested an alternative weak interpretation of the word: an inability to restore without intervention. These weaker definitions are in line with the concept of the contextual dependency of death that becomes very relevant in the neurocritical care environment. For example, Ropper recognized that death depends on technologic opportunities to preserve human life that are available at a given time. This means that so long as there is no machine at the present to substitute for, or restore higher and lower brain function, then brain death is human death. A historical example of Ropper’s view is evident in the impact of mechanical ventilation and resuscitation that eliminated cardiac death as brain death (see Table 8.2 ). Further expanding the contextual dependency of irreversible, under many state statutes, such as the often-cited Capron and Kass model, physicians are bestowed the power to define and identify “irreversible” and “relevant” (brain) functions. † These statutes call for diagnostic decisions to be based on best hypotheses, and recognize that absolute facts are not a reality. Overall, the subjectivity of irreversible to time, technology, and physicians’ best hypotheses leaves room for doubt, debate, and fear of being incorrect.

A Closer Look at the Definition: “Function”

† The Uniform Determination of Death Act also reads that “determination of death must be made in accordance with accepted medical standards.”

In the ABA’s statement that “for all legal purposes, a human body with irreversible cessation of total brain function…shall be considered dead,” it is brain function rather than the presence and viability of the brain or its cellular components that is cited as the necessary criterion for human life. This is evident in medical criteria, as well. What is not obvious in this statement, but is in others and in medical brain-death criteria, is that this loss of brain function refers to a loss of clinical function, not cellular function. Certain statutes, such as that modeled by Capron and Kass, speak of “relevant” brain function, making this point clear. Viable, functional cells no doubt persist in cases of brain death, but the integration of these cells’ functions that confers the “relevant” brain activity sufficient to declare the patient a living human, does not. Bedside assessments can distinguish cellular from clinical function. In contrast to the use of in vitro analytical tools and EEG to determine the viability and activity of cells, clinical function is assessed by such things as pupil reactivity, other brainstem reflexes, medullary response in the apnea test, and withdrawal from painful stimuli. Distinctions between clinical function and neuronal function were made by the President’s Commission in 1981, because it was recognized that clinical functions are observable demonstrations of coordinated brain activity that may irreversibly be lost even when particular areas of the brain remain viable. This report called for all U.S. jurisdictions to accept the Uniform Determination of Death Act, which equated irreversible cessation of all clinical function of the brain with brain death. Consistent with this the American Academy of Neurology (AAN) criteria in 1995 eliminated a flat EEG, a measure of cellular function, as necessary to declare brain death. In one review, the Quality Standards Subcommittee of the AAN found no published reports of recovery in neurologic function in adults who fulfilled the diagnosis of brain death outlined by the 1995 AAN criteria.

The distinctions made between cellular and clinical function in brain death criteria point to an important fact some still dispute: being alive is different from being a living human. To elaborate, persons may die, but their bodies and the disconnected parts of their brain may still live, metabolize, grow, and even carry out previously initiated human reproduction, as in the case of brain-dead mothers. Bartlett and Youngner note that “life may go on after a person has died … [but death of a person] is a question of when we no longer [are] … a living human being… the death of the organism [may] outlive the death of a person.” This, along with insufficient evaluation of neurologic status has led to some confusion made obvious by Alan Shewmon’s declarations of “evidence” (i.e., organ survival) of human life (rather than just life) persisting when brain-death criteria are “met.”

Through this chapter, book, and in day-to-day clinical practice, the reader is asked to keep in mind the difference between cellular and integrated, clinical function. Sometimes neuromonitoring provides output about one, the other, or both, and thus must be appropriately weighted when considering its value in providing insight about the prognosis of maintaining meaningful human life.

Loosening Brain Death Criteria to Include Other Disorders of Consciousness: Issues in Diagnostics and Prognostics

Some clinical conditions with no or significantly impaired higher brain function, or consciousness, do not fulfill the Harvard and similar criteria for brain death, but often are argued as equivalent to human death or to irreversibly dying (see for review). One such condition is the permanent or persistent vegetative state (PVS), in which higher cortical functions (including consciousness) are absent and cannot be restored. ‡ Brainstem function remains intact. In 1988, the AAN, echoed by the American Medical Association (AMA) in 1990, announced approval of withdrawing care from patients who met criteria for PVS, but did not specifically endorse equating PVS to brain death. Hesitation to extend the clinical definition of brain death to include PVS arises from one of two origins: (1) a belief that consciousness is not necessary for human life to persist, declaring brainstem function, with its role in physiologic homeostasis, as necessary (and possibly sufficient) for human life; and (2) a fear that such an extension would increase the number of false-positive brain-dead diagnoses. The latter is the focus here because the concept of consciousness being necessary for human life is discussed in detail elsewhere.

‡ Posner suggests that no restoration is possible in the case of permanent (>1 year) vegetative state, but restoration may occur when the vegetative state is persistent (>1 month <1 year). Some regard the use of “permanent” and “persistent” as confusing, and suggest these adjectives be replaced by a physician’s statement on the prognosis of the vegetative state.

A fear of false positives is understandable given media-popularized stories of “miracles” in the ICU; a patient declared brain dead awakens to life. This leaves the patient’s loved ones distrustful of medical diagnostic criteria for life, and elicits inquiries from readers across the nation as to whether their own deceased loved ones were truly, irreversibly dead. Unfortunately, no media story begins with “this is rarely the case, and is likely due to an error in diagnosis rather than a miracle, but … .” People recall the cases of individuals like Carrie Coons, who in 1989 regained consciousness before a court-ordered act to remove her feeding tube took place. Similar stories are present in academic literature. In 2006, Voss et al. wrote of a 39-year old male shown to be cortically dead, but not dead by whole brain or brainstem criteria, who transitioned to the minimally conscious state (MCS). This may suggest that rather than improved accuracy to diagnose cortical death, conservative criteria that guarantee the presence of widespread, irreversible destruction, such as the current whole brain death criteria, are necessary because patients in MCS may recover. In addition, studies using advanced magnetic resonance imaging (MRI) techniques including functional MRI (fMRI) have reframed questions about consciousness and coma and the capacity of recovery in severe brain injury.

Conservative criteria may only mask the true problem; diagnostic accuracy needs improvement. This problem was addressed by Andrews et al. who reported a misdiagnosis of 40% of their 40 patients who were diagnosed as being in PVS (they were actually in MCS). Patient blindness or severe motor disability or insufficient patient observation, confusion with terminology used, and evaluation by inexperienced physicians were the most common reasons for the misdiagnosis. These issues become relevant in the neurocritical care unit (NCCU) where consciousness and neurologic function often may be altered by therapies designed to correct an abnormality detected by a monitor. Inexperience with the neuromonitor can lead to potentially serious errors if something such as the absence of intracranial blood flow is confused with simply decreased blood flow. In addition, it is unlikely that information provided by a monitor presently used in the NCCU, even if that information is consistent with current clinical criteria for brain death, will replace that criteria because monitors for the most part assess one aspect of brain function. The information from a monitor may be useful to decide when a “brain-death” examination is necessary.

If death is considered to be an event, not a process, neuromonitoring may lend insight to the intricacies of dying and the process that precedes the event of death. ^§This could increase prognostic accuracy. It also may improve diagnostic accuracy and serve as a confirmatory test, which is deemed necessary by some neurologists. Specifically, neuromonitoring could identify events, such as cessation of cerebral blood flow, that are indicative of severe brain dysfunction or herniation and not compatible with life and other means of irreversible neuronal destruction. Furthermore, because neuromonitoring can improve diagnostic and prognostic abilities, it may simplify critical care ethics by relieving the physician of the burden of doubt. As prognostic and diagnostic tools are improved, however, caution is needed not to veer too far from conservative criteria that add extra protection against false positives of brain death. For the moment the concept of imminent brain death is based on clinical criteria including: (1) mechanically ventilated deeply comatose patient, admitted to an ICU, with (2) irreversible catastrophic brain damage of known origin, and (3) a Glasgow Coma Scale score of 3 and the progressive absence of at least three of six brainstem reflexes or a Full Outline of UnResponsiveness (FOUR) score of Eyes (E), Motor (M), Brainstem (B), Respiration (R). This definition may be useful in identifying potential organ donors.

Futility

§ Note that some view death itself as a process, rather than an event.

The end of human life has numerous conceptual and clinical definitions, but these definitions do not clarify the irreversible points that lead to this inevitable end. The theoretical concept of futility seeks to identify these points, but there is no consensus on a practical delineation of states or measures that strictly define futility. Differences in these practical definitions often depend on the religious beliefs and cultural practices that assign particular restrictions, definitions, and priorities to life, death, and medical intervention. Governing bodies in the United States tend to be sensitive to these differences. In 1991 the state of New Jersey enacted a law that provided citizens with a religious exemption from brain death determination. In these cases only cardiopulmonary arrest is an acceptable criterion for death. Similarly, New York hospitals must have a protocol that allows for a “reasonable accommodation [to] religious or moral objections” to neurologically determined death, although, unlike in New Jersey, patients are not ubiquitously given power to veto brain-death determinations. Although such culturally sensitive policies protect citizens’ First Amendment right to free exercise of religion (applicable to state law through the due process clause of the 14th constitutional amendment), they limit physicians’ ability to avoid futile measures.

In medicine, futility is most simply understood as any measure that will not sufficiently restore quality or quantity of life-years. ‖ The AAN set forth three key considerations for physicians when treatment may be considered futile (specifically in the setting of PVS). They are as follows:

‖ It differs from rationing in that in determining whether a treatment is futile, the physician asks whether it will achieve a beneficial end, rather than if it is worth using a treatment knowing its likely result weighed against its financial and resource consumption (i.e., hospital beds) costs.

1.

A patient’s right to self-determination is central to the medical, ethical, and legal principles relevant to medical treatment decisions.
2.

A physician also must attempt to promote the patient’s well-being, either by relieving suffering or addressing or reversing a pathologic process. Where medical treatment fails to promote a patient’s well-being, there is no longer an ethical obligation to provide it.
3.

Treatments that provide no benefit to the patient or the family may be discontinued. Medical treatment, including the medical provision of artificial nutrition and hydration (ANH), provides no benefit to patients in a persistent vegetative state, once the diagnosis has been established to a high degree of medical certainty.

The second consideration is most important; physicians who cannot reduce suffering or stop a pathologic process are freed of an ethical “obligation” to treat the underlying pathologic process (symptomatic or comfort-directed treatment, however, is still appropriate) because such treatment would be futile. Physicians carry the burden to determine whether feeding or other means of support actually prolong death and not life (i.e., are futile). The only exception to this “rule” occurs if a patient’s advance directive, or known previously communicated opinion, indicates a wish for continued treatment in the setting of inevitable death (futile treatment). In this case, the patient’s wish must be upheld to protect his or her autonomy, and here the importance of the physician-patient relationship and physician honesty must be emphasized. The AMA echoed these positions a year after the AAN voiced them. Because brain death defines an irreversible state given the technology available, no current medical intervention can “improve” a brain-dead person’s well-being. Thus all medical measures used in a brain-dead patient, including neuromonitoring, are futile. Similarly, in PVS patients, it is assumed that the patient will not regain consciousness, and so treatment is futile. ¶ The war against futility often drives policy and position statements. This has been true for some time but continues to stir controversy. An early example of academia that convened to combat futility was when the Harvard Commission put forth their set of brain dead criteria. Other examples include the AAN and AMA statements that support withdrawal of care when futile, all of which arose from intents to avoid futile measures in PVS patients.

¶ It is possible that the rare reports of patients diagnosed as in PVS, who later recovered consciousness outside of the probable timeframes for recovery of 3 months (nontraumatic) and 12 months (traumatic) originally may have been in MCS, and simply were misdiagnosed.

Several recent legislative bills, antagonistic to efforts to minimize futility, were drafted and introduced because of the Terri Schiavo case. These bills aim to reverse the policy that favors withdrawal of artificial nutrition and hydration and other treatments when a physician believes medical measures are futile, and no advance directive dictates otherwise. This would transfer decisive power from physicians and families who have insight to the patient’s wishes to a detached governing body, and would set the default to administering potentially futile treatments. The AAN does not support this, as evidenced by its 1988 position statement, and its public opposition in 2005 to “all state and federal legislation that would presume to prescribe the patient’s preferences for artificial hydration and nutrition in situations where the patient lacks an advance directive or living will.” The AMA adopted this latter position to complement their policies that limit legal jurisdiction in end-of-life decision making, and aim to avoid futile treatment. Although the legal system does not entirely coincide with these position statements and leaves loopholes for vetoing physicians’ and families’ decisions to withdraw care if clear advance directives or unified proxy support for withdrawal are not available, historically, courts have voted in favor of such withdrawal, so long as clear opposing directives also are not available. This is consistent with Americans’ constitutional First Amendment rights, which grant a coveted luxury of society: autonomy, even when autonomous wishes are known only from loved ones and surrogates (see for discussion). The Cruzan case was an important national precedent in establishing this right and is summarized in Table 8.2 .

Futility can be considered in relation to autonomous individuals, but it also has important implications for societal good. What is futile for one may be valuable to others. For example, when life-sustaining ICU measures are considered moral practices, some futile interventions may offer ritualistic benefit to patients, families, and ICU staff and so help facilitate the process of dying. An individual’s outcome may not be improved by monitoring in the NCCU, but monitoring may elucidate pathologic processes that underlie inevitable death or a highly morbid state, and so could lead to improved treatment regimens and drug discovery that will benefit society. A comparison may be drawn to clinical drug trials in oncology when death of the patient is inevitable, or, more closely, to body donation for medical education. Although such use of neuromonitoring may be ethically sound so long as the proper intents and consent support it, caution must be exhibited to not take an entirely utilitarian position. Such a position is antagonistic to John Stuart Mill’s belief that the goal of moral actions is to create freedom and autonomy, not to further the good of any particular division of society. It also is antagonistic to both the AMA’s policy (E-8.081), which states that “any quality of life considerations should be measured as the worth to the individual whose course of treatment is in question, and not as a measure of social worth,” and most importantly, to Americans’ First Amendment, constitutional rights.

Futile measures carry financial, emotional, and ethical costs that neuromonitoring may either exacerbate by being futile itself or relieve by helping to identify futile treatments. It must be stressed that physicians are not obligated to take futile measures, but that they may be pushing the ethical envelopes if they do so. For example, hospital or ICU beds used by patients in whom measures are futile are not available to other patients who require care. Thus rationing of care in the ICU is necessary to maintain an ethical practice. Even in cases in which society may benefit from a futile action (e.g., neuromonitoring in a PVS patient), both lack of patient consent for continued care and a lack of financial capacity ethically disfavor futile treatment. Neuromonitoring in this case includes continuous physiologic data but may also include serial “biomarkers” collected over several days or sophisticated imaging techniques (reviewed in Chapter 18 , Chapter 28 ). A balance is necessary because this information can help decide when management is futile or help “predict” which patient may have a “good” outcome or a “poor” outcome, the definition of which may depend on whether a caregiver or family member is asked. For example, a family member may regard a good outcome as recovery of functional communication even though the individual may remain physically dependant. Functional communication recovery can be assessed through the Coma Recovery Scale-Revised (CRS-R).

A feasible way to decrease the financial burden of patients with disorders of consciousness requires improved diagnostic and prognostic assessments. This particularly benefits decision making for those patients who meet criteria for the MCS due to any etiology, and patients with a traumatic brain injury (TBI) that results in “stunned” neuronal tissue. Unlike brain dead and PVS cases, MCS and TBI patients may have a possible, but ill-defined chance of recovery that calls into question assessments of futility. Perhaps with improved prognostic tools, the probability of such transitions with particular interventions will be easier to assess. Neuromonitoring may harbor such prognostic potential that would not only classify monitoring as valuable in MCS and TBI, rather than as a futile measure in these cases, but also as a tool to avoid other futile measures. These tools also may include sophisticated and advanced neuroimaging techniques or biomarkers. This would lighten the economic and thus ethical loads carried by potentially futile care.

Contrary to the beliefs of some, actions to reduce futility should not be viewed as mere attempts to increase organ donation. Neuromonitoring should have the same aim to combat futility, but it should be recognized that even with this as its aim, some people may perceive it as a tool used to achieve earlier and increased organ donation from patients. Physicians must explain with sincerity to patients, families, and the media that this is not its purpose. The recent birth of this technology and society’s unfamiliarity with it may further contribute to the family’s suspicion and hesitation to condone its use.

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