One would think that among the questions related to the death of a person, whether or not he is actually dead would be among the simplest. And it was for most of human history, because mechanical ventilation was not available. Without sufficient brain function a patient would not breathe, and lack of oxygen would cause cardiac arrest. Cardiorespiratory failure—what is now known as “circulatory death”—was therefore the final common pathway of both neurological as well as non-neurological causes of death.
With the discovery and implementation of invasive mechanical ventilation in the 1950s, however, it became possible to physiologically sustain a patient, even in the absence of brain function. The scientific community initially struggled to classify patients in such a state, with initial reports referring to “death of the nervous system” and coma dépassé, or “a state beyond coma” (Forbess et al., 1995; Jouvet, 1959). This prompted deeper reflection on what obligations remained toward a person in that state, given that the right of competent patients to refuse life-sustaining medical treatment (LSMT) had yet to be established. If the patient were dead, however, ventilators and feeding tubes and the like would not represent “life-supporting medical treatment” and nothing would prevent their withdrawal.
In addition to withdrawing mechanical ventilation—which was not generally done to living patients in the pre-Quinlan era (In re Quinlan, 1976)—there is one other thing that can only be done to dead patients: retrieve vital organs1 for transplantation to another patient. The line between life and death, therefore, needs to be crisply drawn, because even though surrogates now definitively have the right to refuse interventions when a patient’s prognosis is poor—even if he is clearly still alive—the opportunity for retrieval of vital organs only exists for dead patients.
Prior to the advent of mechanical ventilators—and the possibility of declaring heart-beating patients dependent on them as dead—organs were generally procured through “uncontrolled donation after circulatory death” (uDCD), such as after the sudden death of a patient in the emergency department (Kootstra, 1997). The demand for transplantable organs outstripped supply from uDCD, though, leading to further exploration of whether patients without absent brain function might also qualify as organ donors.
In 1968 a Harvard University committee released a landmark article which made a bold claim: patients with absent brain function are actually dead, even if their hearts and lungs continue to function with assistance (Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, 1968). The committee laid out criteria for the clinical determination of brain death and also explored how ethical obligations would change upon such a determination.
This concept of brain death was not universally embraced. Noting the growing waiting lists of hopeful organ recipients—and the increased number of potential donors that recognition of brain death would create—some feared that this was a semantic ruse to increase the pool of available organs. The concept gained increasing traction within the scientific community, though, culminating in the President’s Commission which defined death as the “irreversible cessation of function of either circulatory and respiratory functions, or all functions of the entire brain, including the brain stem” (President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1981). The latter came to be known as “death by neurological criteria” or, more colloquially, “brain death.”
This definition was included in a model statute, the Uniform Determination of Death Act (National Conference of Commissioners on Uniform State Laws, 1981), and soon affirmed by both the American Medical Association as well as the American Bar Association. Forty-five states have subsequently passed laws with a definition of death that is either identical or substantially similar to the UDDA’s (Beresford, 2001). Those states without specific laws rely on precedent-setting court cases, some of which cite the UDDA (President’s Council on Bioethics, 2009).
Even with the addition of brain-dead organ donors, a great many patients were still suffering (and dying) on transplant lists. Meanwhile, the societal consensus over the right of competent patients to refuse treatment was leading not only to the withholding of burdensome treatment but also the withdrawing of LSMT in the ICU. Typically, this took the form of “compassionate extubation” when the burdens were felt to outweigh the benefits. The death of these patients was anticipated, creating the possibility of “controlled donation after circulatory death” (cDCD),2 with greater organ viability than uDCD due to reduced ischemic time.
The first protocol for cDCD was put forth by the University of Pittsburgh (Zawistowski & DeVita, 2003), and the general approach remains the same today. For a patient who is critically ill—generally suffering from neurological injury—and ventilator-dependent, once the family decides to forgo LSMT, the hospital notifies its local organ procurement organization (OPO) as required by the “conditions of participation” set by the Center for Medicare and Medicaid Services (Health Care Financing Administration, 1998). If the OPO determines that the patient is a potential DCD donor, a “designated requestor” approaches the family to discuss organ donation. If the family gives consent, the patient is taken to the operating room for compassionate extubation with standard end-of-life (EOL) care provided by the treating team.
Once the patient becomes pulseless, there is a predetermined waiting period—ranging from ninety seconds to five minutes—to confirm that the patient is, indeed, dead. Once the required duration of pulselessness has elapsed, the organ retrieval team enters the operating room and procures the organs. If the patient has not died within a maximum allotted time (usually one hour), organ retrieval is cancelled and he is taken back to the ICU for continuation of comfort-directed care.
Controlled DCD is not without ethical controversy. Studies have shown, for instance, that EOL care changes during cDCD. Not every hospital allows the family to be present for extubation and/or for declaration of death (Antommaria, Trotochaud, Kinlaw, Hopkins, & Frader, 2009), as is standard for EOL care outside of the operating room. No protocols permit the family to remain after declaration of death, because at that point the retrieval team takes over and begins the procurement. Other deviations from standard EOL care—such as large bore cannulation and administration of medications to optimize organ viability—are addressed later (p. 441).
Controlled DCD also has not resolved the crisis of a lack of organs for transplantation. Over 30,000 transplants were performed in 2015, but more than 120,000 patients remained on transplant waiting lists (Organ Procurement and Transplantation Network, 2017). As a result, increased attention has returned to uDCD, both in the United States (Reed & Lua, 2014) as well as Europe (Dominguez-Gil et al., 2016).
Neither did the UDDA eliminate controversy related to brain death, which once again made headlines in 2014 with two very high-profile cases (Gostin, 2014). Late the previous year, Jahi McMath—a thirteen-year-old with severe sleep apnea—underwent a tonsillectomy and adenoidectomy. Massive postoperative blood loss led to cardiac arrest and ultimately a determination of brain death. Her family, however, refused to accept this diagnosis, claiming since her heart was beating that she was still alive. Their attorney argued that the UDDA represented an inappropriate infringement on their constitutional religious and privacy rights.
Even though the coroner issued a death certificate and multiple courts of appeal refused to compel the hospital to continue treatment—which over the long term would require tracheostomy and gastrostomy tube insertion—the hospital reached a settlement with the family whereby Jahi’s body would be released to them. They subsequently secured the services of physicians who were willing to perform those procedures, prompting calls for an investigation by the California state medical board (Pope, 2014). With the help of like-minded organizations—such as the Terri Schiavo Life and Hope Network—the family then transferred Jahi to a facility in New Jersey.
That choice was significant, as New Jersey is one of four states which do not follow the UDDA. According to New Jersey law,
the death of an individual shall not be declared upon the basis of neurological criteria. . . . when the licensed physician authorized to declare death, has reason to believe . . . that such a declaration would violate the personal religious beliefs of the individual. In these cases, death shall be declared . . . solely upon the basis of cardio-respiratory criteria. (New Jersey Declaration of Death Act, 1991)
Jahi’s parents invoked the religious exception in state law, and thus she could not be declared dead by neurological criteria in New Jersey.
The other well-known outlier is state of New York. Its law is broader than New Jersey’s—encompassing moral as well as religious objections—but also less demanding. While New Jersey’s law precludes a declaration of death by neurological criteria, New York’s merely requires hospitals to “establish written procedures for the reasonable accommodation of the individual’s religious or moral objections to use of the brain death standard” (New York State Department of Health, 2011). California also requires “a reasonably brief period of accommodation” (Uniform Determination of Death Act, 1982), while Illinois law requires hospitals to “take into account the patient’s religious beliefs concerning the patient’s time of death” (Hospital Licensing Act, 2008).
The other high-profile case was that of Marlise Muñoz, a thirty-three-year-old woman who at fourteen weeks of pregnancy suffered a cardiac arrest, likely due to a pulmonary embolism. She was subsequently declared brain dead and her husband requested discontinuation of mechanical ventilation. The hospital refused, though, citing the Texas Advance Directive Act—better known for its role in adjudicating requests for potentially nonbeneficial treatment (p. 368)—which specifically disallows withdrawing or withholding LSMT from a pregnant patient (Texas Advance Directives Act, 1999, Section 166.049).
Subsequent appeal sided with Mr. Muñoz. The court did not weigh in on the constitutionality of the law—which eleven other states have versions of (Greene & Wolfe, 2012)—instead simply noting that it did not apply to Ms. Muñoz. The law dealt with life-sustaining medical treatment, which it is not possible to administer to a patient who is not alive. The ventilator was ultimately discontinued, leading to the death of the fetus as well.
Palliative care has a critical role in the care of both patients who are—or may be—declared dead by either neurological or circulatory criteria. Empathetic listening, establishing goals of care, and maximizing psychosocial/spiritual support are all essential in these situations (Prommer, 2014). For patients who have not been declared dead but are approaching that point, expert symptom management is critical (Rady, Verheijde, & McGregor, 2006). And it is crucial to support families and loved ones through the bereavement process (Kesselring, Kainz, & Kiss, 2007).
Death by Neurologic Criteria
Much has been written about what brain death is and how to confirm its presence. Three clinical criteria have been determined: coma, absence of brainstem reflexes, and apnea (Goila & Pawar, 2009). Testing for these criteria involves several steps. First, coma (i.e., total unresponsiveness) must be confirmed and a serious and irreversible cause identified. Any confounding variables—such as electrolyte, acid-base, or endocrine abnormalities, or effects of sedating or paralytic medications—must be excluded. Blood pressure and body temperature must be normalized, and a comprehensive neurologic exam must show complete absence of brain stem reflexes. Spinal cord reflexes—what some have called “Lazarus signs” in this context (Jain & DeGeorgia, 2005)—do not preclude a diagnosis of death by neurological criteria, as they do not require brain involvement.
Typically an “apnea test” is then performed. The patient is preoxygenated with 100% oxygen, arterial blood gases are drawn, and then the ventilator is discontinued while the patient is observed for any evidence of respiratory effort. Approximately eight minutes later, blood gases are drawn again. PaCO2 of greater than 60 mm Hg—or 20 mm higher than the initial measurement—confirms lack of response to rising PaCO2 and absence of brain stem function. The ventilator is reinitiated after repeat blood gases are drawn, or earlier if oxygen saturations drop below 85% for more than thirty seconds.
In situations where confounding factors cannot be removed—or apnea testing cannot be accomplished or is inconclusive—confirmatory tests such as electroencelphalogram (EEG) or cerebral flow study can be performed. These can also be problematic, however, as any activity on EEG (even “background noise”) precludes confirmation of brain death. A flow study can also be misleading, for while lack of blood flow to the entire brain clearly indicates brain death, a positive finding does not preclude the diagnosis because it is possible to perfuse dead tissue. Diagnosis is even more complex for pediatric patients, as serial confirmatory exams/tests are required over increasing periods of time for extremely young patients.
Whether patients who “rule in” for brain death are actually dead is an ethical question, addressed later. From a clinical standpoint, however, contrary to reports of “recovery” following a diagnosis of brain death (Furness, 2012), a comprehensive meta-analysis of available data found no such cases (Wijdicks, Varelas, Gronseth, & Greer, 2010).
Death by Circulatory Criteria
Compared with the ethical debates about whether brain death is a reliable concept, diagnosing death by circulatory criteria might seem rather straightforward. At least on television, all that is required is placing one’s finger on a patient’s carotid or radial artery, feeling no pulse for a few seconds, and declaring him dead.
In reality, however, it is more complicated because circulatory death requires “irreversible cessation of function of . . . circulatory and respiratory functions” (italics added). Pulselessness and lack of respiratory effort indicate cessation of these functions, but it is not entirely clear at what point this becomes irreversible. After all, the default response to finding a patient without pulse or respiratory effort is to perform CPR, and while the outcomes of this procedure are much worse in real life than on television (Diem, Lantos, & Tulsky, 1996), it is effective in a significant number of cases. Since the patient had been in full arrest, this is classified as resuscitation. But if the patient had been “dead,” this would technically be resurrection, which is quite a claim indeed.
So how can one know whether cessation of cardiorespiratory function is “irreversible,” especially given documented cases of autoresuscitation where a patient’s heart resumes functioning in the absence of intervention? Assuming the patient has a Do Not Attempt Resuscitation (DNAR) order—or else resuscitation would have been initiated immediately—the most reliable method is to wait long enough that autoresuscitation is no longer possible. Studies have shown that two minutes is sufficient to preclude the possibility of autoresuscitation (Sheth, Nutter, Stein, Scalea, & Bernat, 2012). But if external resuscitation has been declined and organ retrieval is not part of the plan of care, there is no reason not to wait longer to obtain definitive reassurance that the patient is dead. The Institute of Medicine (2009), for example, recommends waiting five minutes from the onset of pulselessness before declaring death.
But when organ retrieval is a concern—as in the case of cDCD—there are countervailing reasons to not wait any longer than necessary, as prolonged warm ischemic time negatively impacts organ viability (Hosgood, Shah, Patel, & Nicholson, 2015). This creates the ethical dilemma of balancing certainty that the patient is dead while also honoring the needs of patients in need of transplantation.
A clinician’s obligations fundamentally change once a patient is declared dead. Prior to that point, beneficence, non-maleficence, and especially respect for autonomy are fundamental principles. Once a patient dies, though, he is technically no longer a “patient” (Douglas v. Janssen Funeral Homes, 2011). From that point on the hospital is merely the custodian of a dead body (Miller & Steiner, 2014). As such, declaration of death—including by neurological criteria—identifies a “hard stop” where medical interventions exceed their proper scope of practice (Clarke, Remtema, & Swetz, 2014). Indeed, continuing to use them might represent mistreatment of the newly dead (Anderson, Vernaglia, Morrigan, & Bard, 2007).
This does not mean, of course, that clinicians have no obligations toward newly dead persons. Different obligations are in place, namely reverence and respect, as well as care and concern for the family.
It is clear, then, that the line separating being alive and dead is distinct and crucial. Moving from one side to the other alters obligations and opportunities. This highlights the importance of accurately determining whether a patient is dead, either based on neurological or circulatory criteria.
Death by Neurologic Criteria
Controversies about Brain Death
Since originally put forth by the Harvard Ad Hoc Committee in 1968, the concept of brain death has become generally accepted within the medical community. It justifies not only shifting obligations and goals after its declaration—from those of a living patient to those of a dead person—but also the retrieval of vital organs.
The basis of this is the “Dead Donor Rule,” a fundamental component of transplant ethics. This rule states that “donors must not be killed to obtain their organs” (Robertson, 1999) or, alternatively, that “persons must be dead before their organs are taken” (Arnold & Youngner, 1993). From the perspective of organ procurement, therefore, there is a sharp distinction between a living patient with severe neurological injury (such as in a coma) and a patient declared dead by neurological criteria. Given that transplant can literally be a life-saving procedure—and provide the family of the donor with some solace in their grief—it is imperative to accurately make this distinction.
Brain death is not without its critics, however. As a concept, it is difficult for some laypeople—and even some physicians—to accept (Siminoff, Burant, & Youngner, 2004). Contrary to the conventionally accepted understanding of death as the heart no longer beating and the patient not breathing, brain-dead patients often resemble other (living) patients in the ICU. Their chests rise and fall with each ventilator-assisted breath, and a regular tracing appears on the EKG monitor.
The term “brain dead” itself may perpetuate the misconception that such a patient is not truly dead. It can suggest that while the patient’s brain is not currently functioning, there remains hope for some measure of recovery of the whole person. The reason for specifying a patient is brain dead is obvious: a physician’s assertion that a patient with a beating heart is merely “dead” would likely provoke looks of incredulity. But the clarification also seems to dilute the power of the determination, as one would not pronounce a pulseless patient “heart/lung dead.”
Brain death has been criticized not only for being counterintuitive but also for being philosophically inconsistent. Some have questioned the basic premise that the brain—as the purported primary integrator of bodily functions (Bernat, Culver, & Gert, 1981)—is necessary for a person to be alive. Shewmon (2001), for instance, presents a list of “non-brain-mediated somatically integrative functions,” such as filtering of toxins and maintenance of body temperature. By this argument, cessation of function of the brain does not necessarily mean the patient is dead.
Others have argued that the brains of patients declared dead by neurological criteria have not ceased functioning entirely. Specifically, they point to continued neurohormonal regulation in the presence of a flat EEG (Halevy & Brody, 1993). If the entire brain has ceased to function—and the hypothalamus is part of the brain—how can the latter continue to participate in the negative feedback loop of the endocrine system?
If some question whether a patient who meets the accepted clinical criteria for brain death is truly dead, others have argued that even patients who do not meet those blanket criteria could, in fact, also be dead. Why, they ask, is cessation of function of the “entire brain, including the brain stem” (emphasis added) required for a determination of death? After all, what is truly unique about each person is not his brain stem—and other autonomic brain function—but rather his beliefs, memories, feelings, and so on, which reside in the cortex. Adopting this “higher brain” definition of death would allow patients with brain stem (but no cortical) function to be declared dead (Veatch, 1993), significantly expanding the pool of organ donors.
However, if patients who currently meet the criteria for brain death do not “seem” dead, then patients declared dead on the higher brain criteria really do not seem dead. For example, a patient with no cortical function could still breathe independently, if his brain stem were intact. And while it might seem bizarre to procure essential organs from a spontaneously breathing patient, an even greater quandary occurs with the more common response to a person’s death (i.e., burial or cremation). Are we really prepared to bury a breathing person, based on the medical establishment’s reassurance that the patient is dead by virtue of irreversible cessation of cortical function? This could prompt reconsideration of so-called “safety coffins,” eighteenth-century devices with ventilation pipes and signaling devices to protect against misdiagnosis of death and premature burial (Cascella, 2016).
There is also the concern for the slippery slope if the blanket requirements of the UDDA are softened. What does it mean, after all, to say that there is “no cortical function”? Certainly, complete absence of cerebral flow to the cortices would prove this. But what of patients whose neurons continue to be perfused and discharge electric signals, yet are not able to perform basic functions associated with higher brain activities, such as interacting with others and forming memories? On this revised definition, a breathing, conscious patient with severe dementia might not merely be deemed impaired but potentially qualify as dead (and thus appropriate for burial).
Others have sought to increase the pool of essential organs for transplantation not by revising the definition of death but by questioning the requirement of death itself. They argue that what is most important is not so much that the patient already be dead but rather that adequate informed consent for donation be provided and that disproportionate harm be avoided (Truog & Robinson, 2003). After all, is there such a huge difference between two ventilator-dependent patients for whom the decision has been made to remove physiologic support—if both have previously given consent for organ donation—if one has a few neurons still functioning while the other does not? The end result (i.e., death) is the same, including for patients without any neurological injury who are about to be compassionately extubated. Why eliminate willing candidates simply because they do not meet the UDDA definition of brain death, or risk compromising the viability of organs by having to wait the required time period of the cDCD protocol?
There are two primary reasons why focusing solely on informed consent is a dangerous step. The first has to do with what limits—if any—are placed on the organ donation process. If the only thing that matters is the patient’s informed consent, why limit this to patients who are imminently dying? A patient given a terminal diagnosis—especially if he has decided to forgo LSMT, or even take the further step of physician-assisted dying—would seem a logical donor. He is going to die anyway, so why not offer someone else the benefit of his organs?
And why require terminal illness at all? A patient who is chronically ill but dissatisfied with life might want to make a positive impact as he is liberated from a life he does not want. The ultimate extension of donation criteria would be an “altruistic donor,” a term now generally applied to a living patient who donates one of his two kidneys or a portion of his liver. But if informed consent were the only relevant consideration, then the “ultimate altruist” could choose at any point to save the lives of seven other people—by donating two lungs, two kidneys, heart, liver, and pancreas—at the price of his own life. And is it that great a step to reach nonvoluntary donation, involving patients who “obviously” have no quality of life, beginning with those with unresponsive wakefulness syndrome and moving on to the developmentally disabled and persons with other disabilities?
The second reason to not focus exclusively on informed consent is the potential negative impact on public trust in organ donation. Unlike many other countries which use an “opt-out” approach to organ donation—whereby consent to donate is presumed unless a person has taken active steps to refuse (Rudge, Matesanz, Delmonico & Chapman, 2012)—the United States uses an “opt-in” system which is dependent on public trust that organs are procured (as well as subsequently allocated) in a just manner. Misperceptions about cDCD when it was first introduced (Kolata, 1997) highlight the need to safeguard the public trust to avoid discouraging patients (or their families) from consenting to organ donation. Viewed in this light, focusing entirely on informed consent may represent an example of winning the battle but losing the war.
Requests for Continued Physiologic Support after Diagnosis of Brain Death
In most cases, upon a determination of brain death families are ultimately able to grasp the fact that their loved one is really dead. It may take some time, and even if they do not fully accept it, they will at least recognize that there is no possibility of meaningful recovery and authorize discontinuation of mechanical ventilation on that basis. In rare cases, however, a family may remain resolute in demanding continued treatment.
There are three situations where continued support is well-accepted. The first is in the case of organ donation, where time is often required to convene the retrieval teams as well as to stabilize the patient hemodynamically. The second is when continued physiologic support offers benefit other than to an organ recipient, such as the case of a brain-dead pregnant woman who is sustained until her fetus can be safely delivered (Esmaeilzadeh et al., 2010). The last is when the family requires a little more time in order to “say goodbye.” (It is hard to imagine a medical team refusing to temporarily delay compassionate extubation so as to allow a distant, beloved relative to reach the patient’s bedside.)
Requests for longer delays in terminating physiologic support are problematic, however. One reason is based on distributive justice, given that an ICU bed is being taken up by a patient who cannot conceivably benefit from that level of care (and, indeed, is not even alive). In situations where ICU beds are scarce, depriving needy living patients of their required level of treatment is particularly troublesome.
There is also the matter of reimbursement. Third-party payers generally do not reimburse the hospital for medical treatments which fall outside the standard of care. (Mechanical ventilation for a dead patient would certainly fall into that category.) The hospital is then faced with either absorbing the costs of continued critical care or passing them along to the grieving family.
Finally, there is concern for moral distress of the staff (p. 514). Providing critical care can be emotionally exhausting, given the acuity of the situation and the increased likelihood of a poor outcome. This is especially a concern when staff are asked to continue to care for a dead patient as if that patient were still alive: drawing blood, turning the patient, consoling the family. Basic assumptions of clinical care for a living person—such as local anesthesia prior to invasive procedures—no longer hold for a patient who is incapable of feeling pain. Understandably, most discussions of moral distress comes out of the nursing literature; in contrast to physicians who spend a little time each day with a great many patients, ICU nurses typically care for only one or two patients at a time in prolonged shifts often over a protracted period of time.
When a family requests continued cardiorespiratory support for a brain-dead patient, it is important to identify the reason for their request. It may be rooted in strained communication or mistrust of the medical team. Clearly this is a very emotional time for the family, and if they feel disrespected or disempowered they may “dig in their heels.” In such cases, optimized communication—often through consultation with other services such as palliative care or ethics—can be helpful.
Such a request may also stem from cultural objections to the concept of brain death, which is not universally acknowledged. Romania and Pakistan, for instance, generally do not recognize the concept (Japan Organ Transplant Network, 2017).
If the opposition to withdrawing physiologic support is rooted in religious views, clarification can be helpful, generally from within the family’s religious tradition. Orthodox Jews are perhaps best known for “denying” brain death. While physical decapitation is accepted as death even if there is still some muscle twitching (Mishna, Oholot 1:6), Orthodox Jews generally are not willing—as progressive Jews often are—to extend this analogy to brain death. They cite rabbinical sources which state that as long as the heart is beating and the lungs are breathing, a patient is not dead (Teshuvot Chacham Tzvi, no 77; Teshuvot Chatam Sofer, Yoreh De’ah, no 338). While this is the standard interpretation within Orthodox Judaism (Rosner, Bleich, & Brayer, 2000), recent position statements have offered some degree of latitude on whether an individual rabbi may endorse—or Jewish patient or family accept—a diagnosis of brain death (Rabbinical Council of America, 2010).
Even if an Orthodox Jewish family refuses to accept a diagnosis of brain death, this is not equivalent to demanding maximal treatment. Continuous monitoring and intravenous antibiotics need not be continued, for instance (Inwald, Jakobovits, & Petros, 2000). Even if physiological functioning can be maintained for a period of time, eventually cardiac arrest will occur leading to a condition that the family accepts as death.
But what of a family who—for religious or other reasons—demands maximal treatment with no clear end point? This would include not only antibiotics, but also endocrine monitoring and supplementation, as well as medically administered nutrition and hydration. With such treatment a brain-dead patient could be physiologically maintained for weeks, months, or even years, as exemplified by Jahi McMath (p. 428). The problems of distributive justice, reimbursement, and moral distress will only worsen over time.
As with many other ethical dilemmas, the best way to respond to this one is to prevent it from occurring in the first place. One might start with the terms often used, including “brain death” itself. If one does not declare a patient whose heart has irreversibly stopped working as being “heart/lung dead,” neither should one say that a patient whose brain has irreversibly stopped working is “brain dead.” Rather, it is appropriate to say that the patient is “dead,” while also explaining why he may resemble living patients on ventilators.
Similarly, one should not talk about “life support” for the patient, since it is logically impossible to support the “life” of a person who is dead. (Newspaper accounts do not help in this regard, as they often speak of a patient being declared brain dead and then “life support” being withdrawn [Buck, 2016]). Finally, using colloquialisms such as “feeding tube” (p. 185) may heighten rather than clarify the emotional challenges of the family’s decision.
Asking permission to withdraw mechanical ventilation is also inviting disagreement. In general, clinicians should not ask questions unless they are ready to hear the patient’s or family’s answer. In this case, professional obligations, expert consensus, and legal opinion—except in a handful of states, particularly New Jersey—are clear: there is no obligation to maintain physiologic support of a person who is brain dead. Thus it is entirely appropriate to approach the family by saying, “We’re very sorry to have to inform you that your loved one has died. Is there anyone who wants to spend a few minutes with him before we discontinue the ventilator?”
If the family remains adamant despite this thoughtful approach, there would be seem to be three possible responses. One would be to honor the family’s request out of deference to their grief and not wanting to provoke conflict. The patient in this case would not be suffering, and as such this would represent an extreme form of the well-accepted practice of treating the patient “for the benefit of the family,” if there is a sense that the patient would have wanted to continue (Hardwig, 1991). Such an approach, however, would have a substantial negative impact on other patients in need of critical care, professional ethics, staff morale, and potentially the family’s financial well-being.
The second option is time-limited trial (TLT, p. 118) of continued physiologic support, at least in terms of mechanical ventilation. It would certainly be reasonable to consider decreased monitoring as well as a Do Not Attempt Resuscitation order—which could legitimately be called a cannot resuscitate order—in case of cardiac arrest. To the degree that this middle ground could lead to a mutually acknowledged death of the patient without additional conflict and suffering, it resembles a Do Not Escalate Treatment order (p. 120).
The purpose of continued mechanical ventilation is not to determine if it will benefit the patient—which it logically cannot because he is dead—but to determine if the family will come to accept the diagnosis of death over that time. Ideally, such a step will build rapport with the family by showing respect for their beliefs. As a middle ground between two extremes, it moderates the drawbacks of each. For instance, distributive justice and moral distress are still concerns, but not as much as if support continued over the long term.
By the same token, if there is a sense that unilateral withdrawal is intended at the end of the TLT, this may undercut the rapport with the family that the team is attempting to build. Ultimately, this approach will either build consensus (if the family accepts the diagnosis), defer to the inevitable (if the patient’s heart stops during the TLT), or simply “kick the can down the road,” delaying a definitive decision.
The final option is to unilaterally discontinue physiologic support. This violates neither professional norms nor the vast majority of state laws, while also sparing the staff ongoing moral distress and respecting the needs of other patients in need of critical care. And while it may appear “heartless” in the face of the grieving family’s desperate pleas, others might view it as being “cruel only to be kind” (Shakespeare, 1970), sparing the family ongoing suffering by taking the decision out of their hands.
The practical implications of such an action need to be considered. A family that does not accept that their loved one is truly dead is likely to strenuously object to any attempt to discontinue respiratory support. This may take the form of seeking a temporary restraining order against extubation (Burkle, Schipper, & Wijdicks, 2011), or even physical resistance. In the case of families with well-established religious objections, attempted withdrawal may be viewed as disrespecting their faith tradition. And at least in the short term, it may exacerbate an already crippling grief.
Ultimately, the correct approach largely depends on one’s sense of the family and their reasons for rejecting the patient’s diagnosis. The first option (full capitulation) is rarely right, as it represents an abdication of professional responsibility and an invitation to greater conflict in the future. The second option is moderate and reasonable, especially when there is a sense that the family over time will come to accept the diagnosis. Even if that is not currently apparent, deepening rapport may help them reach this point.
Unilateral discontinuation of respiratory support is a last resort. This is in some ways an extreme example of forgoing nonbeneficial treatment (NBT, chapter 14), for clearly none of the treatments in use have any chance of benefitting the patient. But neither can the patient suffer, thus allowing some room for discretion. If the family persists in their demand for maximal treatment even after the TLT has concluded, the process recommended for potentially NBT could be utilized, including a second opinion and consultations with ethics, palliative care, spiritual care, and risk management (although these likely would already have occurred). It may also be possible to transfer the patient to an accepting facility, as occurred with Jahi McMath.
Ultimately, though, this runs the risk of disrespecting the patient as a person. Granted, a brain-dead patient cannot perceive suffering in real time, but if continued interventions violate the patient’s values, this could be viewed on inflicting harm on his personhood, his legacy. Rather than transferring the patient to a willing facility—and further prolonging the family’s grief—it is usually more appropriate to take a principled stand after the family has been given sufficient time to come to terms with the diagnosis. The question of precisely how much time that is, however, remains.
Palliative care is especially critical in conflictual situations such as these. Expert communication and conflict mediation skills are necessary, especially in an emotionally fraught context. As a consulting service not tasked with the “ultimate decision” of whether to withdraw support, the palliative care team can hopefully be a bridge between the primary team and the family. As specialists comfortable discussing death and familiar with the ambiguities of values-laden decisions, the team is ideally situated to provide support to both the family and the staff, while always keeping the patient’s dignity and values paramount in the discussion.
Deciding Whether Even to Test for Brain Death
There is an old saying in medicine: “Don’t do a test unless it will change management.” Many tests are invasive and painful, and some may cause unnecessary harm or suffering, as in the case of an amniocentesis for a genetic condition if the parents are not considering termination (p. 294). The results could also be misleading, especially if the prior probability of the tested-for condition is sufficiently low. In that case, a positive result is more likely to be a false positive than a true one. A clinical test should, therefore, only be performed if it will generate reliable information that is sufficiently relevant to future decisions to justify any inherent risk.
Take, for example, a patient who has suffered a serious brain injury and whose family has decided to withdraw LSMT. The only reason to pursue a determination of brain death in such a situation is if the patient might wish to be an organ donor, recognizing that the viability of organs from a heart-beating donor will be greater than from a cDCD donor.3 If the patient did not wish to be an organ donor, LSMT can be withdrawn without having to go through the process of determining whether the patient is actually brain dead. Of course, if the family was uncertain whether to forgo continued treatment, determining that the patient is already dead would remove this burden from them.
The other situation where it may not be reasonable to test for brain death is if the family has made it abundantly clear that they would not accept such a diagnosis, and the clinical team is not currently willing to unilaterally withdraw ventilatory support. As noted earlier, third-party payers will not reimburse the hospital for physiologic support of a brain-dead patient, thus forcing the hospital to either absorb the cost or (more likely) pass it on to the family. For ICU care over a period of days or even weeks, this can result in a massive bill. Some families may therefore withhold consent for apnea testing, fearing the legal and ethical ramifications of a confirmatory test.
It may seem disingenuous to cast a blind eye at what seems obvious (Bliss & Macauley, 2015). But what seems obvious may not be true, especially given the strenuous requirements of the “whole brain definition” of death. It is also important to recall that there are many situations in medicine where confirmation of suspicions is not sought, such as the cachectic patient with a lung mass found on x-ray who does not want to know if it is cancer and would not accept treatment even if it was. Not only would performing such a biopsy violate the patient’s autonomy; it also would not produce results that would change management.
The norm should remain performing an apnea test in cases of suspected brain death. Absent a strong sense that the family is unalterably opposed to withdrawal of support if the diagnosis is confirmed, an apnea test is likely to provide valuable clinical information. But when the family has made it abundantly clear that forgoing mechanical ventilation is not an option, it may be more prudent to defer the test and focus on ongoing dialogue with the family and attending to their emotional needs, which also avoids saddling them with crippling medical bills.
Death by Circulatory Criteria
DCD presents a distinct set of ethical issues. Whereas much of the brain death controversy revolves around whether a patient is truly dead—and whether his family is willing to accept that he is—patients who die during the DCD protocol meet the conventional expectations of death: their hearts are no longer beating and lungs no longer breathing. It is not entirely clear, however, how long one’s heart and lungs must go without functioning to meet the UDDA’s requirement of “irreversibility.” Neither is it obvious what modifications to standard EOL care are permissible, in order to maximize the benefit to another patient (i.e., the organ recipient). Finally, one might reasonably inquire whether the involvement of palliative care clinicians in organ donation risks conflating the latter with EOL care, thereby harming the mission of palliative through inaccurate assumptions.
Irreversibility and Permanence
The UDDA defines circulatory death as the irreversible cessation of heart and lung function. In situations where a patient has a DNAR order and is not a potential DCD donor, the question of what constitutes “irreversibility” is not pressing. There is no rush to declare the patient dead; indeed, taking one’s time assures that this is not done prematurely.
For a patient who is not DNAR, irreversibility matters because once a certain amount of time has passed, CPR will not be effective and thus should not be instituted. Conversely, in the context of DCD the time to irreversibility represents a minimum waiting period following pulselessness, to ensure that the Dead Donor Rule is not violated (American Academy of Pediatrics, 2013).
This time pressure creates an inherent trade-off: the longer one waits to declare death, the more certain of the diagnosis but also the longer the “warm ischemia time” of the organs, negatively affecting their viability. On the other hand, a shorter waiting period maximizes organ viability but creates uncertainty as to whether the retrieval might violate the Dead Donor Rule. In an attempt to balance these considerations, the Institute of Medicine (2000) has suggested a five-minute waiting period. Some hospital protocols, though, use as little as ninety seconds (Boucek et al., 2008), running the risk of precluding the possibility of autoresuscitation.
The criteria used for declaring death were the focus of a recent debate concerning pediatric heart transplantation following cDCD (Boucek et al., 2008). It may initially seem contradictory to speak of heart donation after cardiac death, as the practice was known at the time. But in this small case series three critically ill infants were compassionately extubated, and ninety seconds after onset of pulselessness, death was declared. The infants’ hearts were then procured and transplanted into other babies who were suffering cardiac failure, at which point external resuscitation was applied and the hearts began to function again.
Some have criticized this as a violation of the Dead Donor Rule, since clearly those three hearts did not “irreversibly” cease to function (Veatch, 2008). Defenders of the procedure, however, draw a distinction between “ ‘permanent’ (will not reverse) and ‘irreversible’ (cannot reverse) cessation of functions” (Bernat, 2010). They argue that the transplanted hearts did not function in the donors—as external resuscitation was not offered—but could still function in the recipients, with medical assistance. The cessation of function was therefore permanent, although not irreversible.
This distinction is also applied (at least implicitly) in other areas of clinical practice. There have been documented cases of survival—admittedly, often with significant impairment—when CPR has been instituted as long as fifteen minutes after the onset of asystole (Joffe et al., 2011). Yet physicians do not generally feel the need to wait such a long period of time after onset of pulselessness to declare death. Asystole just beyond the time limit of possible autoresuscitation is not irreversible but for a patient who is DNAR it is permanent (and thus justifies declaration of death).
The Institute of Medicine definition of death also implicitly appeals to permanence, since pulselessness of greater than five minutes’ duration has been reversed in some cases. Raising the bar for declaration of death to require true irreversibility would have a significant negative impact on organ viability in even the most conservative DCD protocols.
The operative question, then, is not whether asystole can be reversed but will it be. And if it will not—whether based on impossibility (i.e., irreversibility) or refusal of treatment that could reverse it (i.e., permanence)—then the patient can legitimately be declared dead.
While thoughtful and reasoned, this permanent/irreversible distinction can be lost on many observers, especially given the context of cDCD. In light of these nuanced distinctions, it is not surprising that most pediatricians in a recent survey were not confident that cDCD donors were truly dead (Joffe, Anton, & deCaen, 2008). Even if death is acknowledged, the ethical propriety of cDCD could be questioned (i.e., “Isn’t that just killing the patient to get his organs?”). This potential for misunderstanding highlights the need for clinicians—and palliative care clinicians, in particular—to be able to effectively articulate the ethical justification for cDCD.
Organ donation creates several scenarios that may appear to violate Kant’s (1981) Categorical Imperative, which clearly states that one should never treat another person “merely as a means to an end, but always at the same time as an end.” For instance, a living donor incurs significant burden—in the form of pain, as well as increased risk of morbidity or even mortality—in order to provide the recipient with a functioning kidney. But the donor was not treated merely as a means to an end; rather, the altruistic act of donating organs reflected his goals and values, thus providing comfort and meaning to both him and (hopefully) his family.
Controlled DCD also involves tradeoffs. Rather than dying surrounded by potentially many relatives in the hospital room that has come to seem familiar, the patient dies in a sterile operating room with only a few family members allowed to be present, who cannot stay with the body after the confirmatory period of pulselessness has elapsed. Clearly there is loss, but hopefully the benefit of offering life to another person is enough to compensate for it. Ultimately, cDCD is an act of respect for an altruistic patient’s autonomy.
There is risk, however, that the needs of the organ recipient could take precedence over those of the donor, potentially exposing the latter to unnecessary harm or burden. One such risk involves the consent process, during which it is crucial that the team caring for a potential donor focus exclusively on the care of that patient. Standard practice is that the decision to withdraw LSMT should be made without consideration of possible donation. Only after this decision is made should the OPO make contact with the family to discuss donation. This is clearly articulated in policies from both the United Network of Organ Sharing (2011) as well as the Organ Procurement and Transplant Network (OPTN, 2016), which states: “Prior to the OPO initiating any discussion with the legal next of kin about organ donation for a potential DCD donor, the OPO must confirm that the legal next of kin has elected to withdraw life-sustaining medical treatment.” The palliative care community also endorses this requirement (Lustbader & Goldstein, 2015).
Once consent is obtained, certain interventions may be considered to optimize organ viability, including heparin and vasodilators to minimize the risk of clotting, as well as placement of a large-bore catheter to administer fluids and medications. These are not generally components of EOL care, and in some cases could conceivably cause harm to the patient (such as by increasing the chance of hemorrhage). Such actions are being taken for the well-being of another patient (i.e., the recipient).
But they are not merely being done for the recipient. They should reflect the altruistic values of the donor, which makes obtaining informed consent—and confirming that the donor would have been willing to accept additional interventions—crucial. It is also important to recognize that these interventions are not the cause of the patient’s death, given that the decision to withdraw support should have been made prior to the OPO’s involvement.
The third area where the needs of the donor and the recipient may seem to be in conflict pertains to the time limit (generally one hour) in the operating room. Past that point, organ viability is sufficiently compromised to justify cancelling the procurement and taking the intended donor back to the ICU to continue comfort care. This may create a sense of pressure to expedite the process within the one-hour time frame in order to fulfill the donor’s last wish, as expressed by his family.
This is precisely the reason the organ procurement team is not permitted in the operating room until death is declared. There have been case reports of violations of this rule, with the procurement team supposedly perceiving suffering—which the ICU team did not—and on that basis urging administration of additional opioids, which in one case the surgeon unfortunately referred to as “candy” (McKinley, 2008). This engendered suspicion that the transplant surgeon was attempting to expedite the donor’s death to ensure that organ procurement proceeded.
Egregious examples such as this underscore the need to provide the standard of care in EOL treatment. This can be challenging, though, depending on the personnel involved. For instance, an anesthesiologist—whose “domain” is the operating room—might be called upon to care for the donor until death is declared. But unless the anesthesiologist also practices critical care, she may not possess expertise in symptom management at the end of life. This not only impacts the provision of clinical care but could also have repercussions if there are insinuations that the patient’s death was hastened in order to procure the organs. Even if upward dose titration conformed to the standard of care, an anesthesiologist—unlike a physician who routinely provides EOL care—would not be able to defend herself by pointing to the equivalent treatment she had provided to other EOL patients (because there would not be any). It is therefore important to consult the palliative care service, if they are not already involved in the care of such a seriously ill patient (Kelso, Lyckholm, Coyne, & Smith, 2007).
Antemortem Retrieval of Vital Organs
Another controversial area where death could be hastened—or at least perceived to be hastened—is by stretching the limits of (without technically violating) the Dead Donor Rule, in order to optimize organ viability. For instance, some have suggested that rather than waiting for a cDCD donor to become pulseless for a set period of time—thus risking ischemic damage to the organs—some vital organs could be retrieved before death (Morrissey, 2012). One example is bilateral nephrectomy, for while kidneys are necessary to sustain life, they are not imminently necessary (i.e., a patient can survive for days without his kidneys). The rationale is that the patient will die from respiratory failure following compassionate extubation long before he would die of renal failure, thus technically abiding by certain formulations of the Dead Donor Rule.4
However, given the importance of public trust in the process of organ donation, removing vital organs in this way—while likely not actually hastening the patient’s death—could negatively impact the overall mission of organ donation. It also creates a slippery slope where other organs might be removed antemortem, anticipating that the patient will die within an hour following extubation (or very soon thereafter). It is often extremely difficult to predict with certainty, however, how long a patient will live (p. 166), even after compassionate extubation. Such a practice therefore risks compromising the fundamental rule of organ donation, for the sake of only modest increases in organ viability.
Blurring the Line between Organ Donation and End of Life Care
As noted, professional and ethical bodies support the position that cDCD be raised by the designated requestor only after the decision has been made to withdraw support. There is concern, however, that in an attempt to increase the number of organs available for transplantation, this requirement may not be adhered to. For instance, recent modifications in OPTN guidelines allow for great individual variation in hospital organ donation policies. An example is a recent media report where OPO representatives were reportedly “introduced to families early, not as organ procurement organizations but as end-of-life care specialists” (National Public Radio, 2013). This may lead to situations where the lines between organ donation and EOL care are blurred.
It is extremely important to be clear with the family about each person’s role and primary obligations. Not doing so risks depriving families of the palliative care they need and deserve—by falsely identifying OPO representatives as experts in EOL care—as well as tainting the field of palliative care with misleading associations.
At the same time, one can reasonably wonder whether the requirement that organ donation only be discussed after the family has decided to withdraw LSMT is sacrosanct. The underlying premise is obvious and worthy: no patient or family should be pressured to withdraw support in order to donate, which would clearly violate the Categorical Imperative. But is it so hard to imagine a patient whose likelihood of recovery is extremely poor and whose level of consciousness is so depressed that he is thought incapable of suffering, and whose family decides to continue with LSMT—at least temporarily—because “there is nothing to lose”? Imagine further that the patient was a passionate advocate of organ donation, having specified in his advance directive that he very much wanted to be a donor. There might be situations where continued treatment could render the organs less viable for ultimate transplantation, or even disqualify the patient as a donor altogether. If so, wouldn’t the fact that organ donation might cease to be an option be a relevant consideration that the family has a right to know about, as they attempt to apply the patient’s values to the decision?
Clearly, this is something of an unusual—if not exceptional—circumstance. As such it represents a potential “exception to the rule,” rather than a justification for changing the rule itself. Concern for divided loyalties and subtle coercion are more than sufficient to support the standard position that OPO staff—whose mission is to foster organ donation—should not raise the issue before the decision to withdraw LMST has been made.
But given that the palliative care team is likely involved in the care of such a critically ill patient, in the course of a comprehensive discussion about the patient’s goals and values—perhaps transitioning into dignity therapy (Thompson & Chochinov, 2008) as it becomes clear the patient will not survive—a personal dedication to organ donation may become apparent. If so, it is appropriate for the palliative care team to explore how that might fit into the overall values of the patient, and ultimately to the goals of care. After all, competent patients are permitted to refuse LSMT for essentially any reason; the hope of giving life to another person is surely a worthy one.
• Prior to the use of mechanical ventilators, there was no need to define death, as a patient whose brain was not functioning also would not breathe, and thus his heart would inevitably stop.
• The concept of “brain death” was developed in the 1960s and ultimately came to be incorporated into the UDDA which defined death as the “irreversible cessation of function of either circulatory and respiratory functions, or all functions of the entire brain, including the brain stem.”
• The Dead Donor Rule is a foundational principle of transplant ethics, stating that a donor should be dead before vital organs are retrieved.
• Death by neurological criteria:
• Some have questioned whether patients who meet the criteria for brain death are actually dead (by virtue of continued neuroendocrine function), and others have questioned whether cessation of function of the whole brain is necessary for death. The UDDA definition remains standard, though.
• When a family rejects the diagnosis of brain death and demands continued ventilatory support, often the wisest response is to offer a TLT of continued support with an agreement not to escalate the current level of treatment.
• In extreme circumstances, extubation over the family’s objections may be necessary.
• Where it is clear that the family will not accept a diagnosis of brain death, consideration should be given to temporarily deferring apnea testing if it will not change management.
• Death by circulatory criteria:
• The duration of pulselessness required to determine death by circulatory criteria must exclude the possibility of autoresuscitation and in the context of DCD impacts organ viability.
• With regard to pulselessness, permanence is a more helpful concept than irreversibility and is generally applied in clinical situations other than transplantation.
• An organ donor may undergo certain interventions for the benefit of the recipient, but only with explicit informed consent and with the assurance that the standard of treatment for EOL care will be maintained.
• Antemortem retrieval of vital organs is not consistent with certain formulations of the Dead Donor Rule and endangers public trust in the organ donation process. It should therefore be rejected.
• While they often collaborate, a crisp line should be drawn between organ procurement representatives and palliative care professionals. The former should never raise the prospect of organ donation before a decision has been made to withhold LSMT. If, however, the family raises that subject with palliative care professionals as part of a general discussion of overall goals of care, it is appropriate to explore acceptable options.
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1. “Vital organs” refer to organs that are necessary for the donor to live.
2. This procedure was initially termed “non-heart-beating donation” to differentiate it from procurement from a brain-dead donor (whose heart was beating). That was subsequently changed to “donation after cardiac death,” which became problematic in light of heart transplants following declaration of death by cardiorespiratory criteria (p. 440). Ultimately, “donation after circulatory death” emerged as the preferred term.
3. Assuming that the patient is even a candidate for cDCD donation, which he might not be if he is likely to be able to breathe independently for more than one hour after extubation.
4. In this case, the patient is not killed by the removal of vital organs, but neither is he already dead when they are removed.