Journal of Critical Care 29 (2014) 872–874

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Journal of Critical Care

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“As good as dead” and is that good enough? Public attitudes towardbrain death

1. Introduction

Death by neurologic criteria entered the language with the term,brain death. What is not clear is howmuch people truly understand oragree with the term even as they use it. Since 1978, state laws haveestablished that a person dies after the irreversible loss of brainstemand higher function [1]. There is widespread public acceptance of thegeneral idea, enough to allow the transfer of organs from the newlydead to the living. But the reality of brain death, especially to thoseable to observe it up close, is not so straightforward. As the debateover its authenticity rages among bioethicists [2], there is a parallelmisgiving with the public that erupted recently with the case of JahiMcMath, a brain-dead teenager whose path to the morgue wasblocked by court order [3]. More pervasively, the public’s trouble withneurologic death fuels other tensions in health care, such as mistrustof physicians and claims of inequity in the health care system. Thetransplant industry, meanwhile, faces a growing shortage of availableorgans. All they canhope todo is increase the rate of consent for donation,now ranging from 59% to 77% around the country [4]. This article willexamine the public’s view of brain death, and how revising howwe labelthe brain-injured patient may be just what the public wants.

2. Death as a social construct

Historically, death has been an observable part of daily life. Ithas been the subject of cultural ritual, beginning as early as theCro-Magnon era, through the embalming techniques of the Egyptians,to the early Christianbelief of the soul departing in the body’s last breath[5]. Death has always been an immediate event seen through the slowprogression from rigor mortis (stiffening of the body), livor mortis(discoloring of the body), or algor mortis (changes to the eyes) [6]. Infact, death was not a single moment but an unfolding process, whichartists in medieval Europe and 14th century Japan have depicted instrikingly similar ways [7].

Up until the modern era, most Americans understood the dyingprocess becausemost simply died at home. Themajor shift beganwiththe creation of the hospital, where strangers became the caregivers[8]. Physicians became the pronouncers of death, now defined whenbreathing stopped and the heart grew silent. Then came the advent oftechnologies centered in the new intensive care units, which savelives, except those for whom deaths wasmerely postponed. Suddenly,people were confronted with the possibility of a loved one alive butstripped of the experience of being alive in any socially defined way. Aperson’s heart could still beat, whereas the rest of the body appearedas a motionless corpse.

http://dx.doi.org/10.1016/j.jcrc.2014.06.0180883-9441/© 2014 Elsevier Inc. All rights reserved.

With organ transplantation a reality, the stagewas now set for a newdefinition of death, embodied in the report of the Ad Hoc Committee ofthe Harvard Medical School to Examine the Definition of Brain Death in1968 [9]. The introduction of the brain death concept gave familiesfinality alongwith anendof thefinancial burden [10],whereashospitalscould reclaim precious intensive care unit beds. The declaration of braindeath provided the legal and social foundation to retrieve organs from afunctioning body without killing the now-dead patient.

3. The experience of the donor patient’s family

But unlike circulatory death, where the body loses heat andchanges color, defining neurologic death demands specializedtraining and testing. More importantly, it requires a special explana-tion. The most authentic source of public attitudes toward brain deathcomes from studies of families faced with the decision to donate. Thissetting allows families to hear doctors explain the meaning of theterm, where their questions and doubts can be addressed.

Despite this opportunity for clarity, confusion stills take hold. Oneof the largest studies drew upon 9 trauma hospitals, where more than400 families participated in a 3-part interview process. Whenresearchers asked them to explain brain death, only 28% could givea completely correct definition. Sixty-seven percent were partiallycorrect [11]. Even among family members who correctly gavestatements that the brain was not functioning, less than 16% gavestatements that equated brain death with death.

Regarding the condition of the patient directly, almost 60% offamilies made statements revealing that they felt the patient was stillalive after being told they were brain dead. For instance, 33% believedthe patient was in a coma or vegetative state. Twenty-four percent saidthat the patient had lost personality but was not completely dead.Althoughmost families would eventually accept that the patient wouldnot recover, 21% still held out hope. Twenty-nine percent agreed withthe statement that a person is dead only when the heart stops.

What was probably most remarkable was that the decision todonate bore a limited relationship to their understanding of braindeath. Specifically, families who donated were no more likely tocorrectly define brain death or identify tests that confirmed it thanfamilies who did not donate. In fact, among the 232 families whoagreed to donate, 60% said that the brain-dead patient was still alive.The question this raised to these researchers was not whether thefamilies believed that the patient actually died, but whether theircondition was deemed so hopeless that they were “as good as dead.”

Not surprisingly, this difficulty to accept death in a person whoappears warm and alive is a common finding [12]. In a small study

873Special Section. "Death by Neurologic Criteria 1968 - 2014: Changing Interpretations" / Journal of Critical Care 29 (2014) 872–874

drawing upon family discussions of the donation experience [13],individuals described a conflict between understanding the conceptof brain death and being able to accept this for their loved one. Theyremembered looking at signs of life (such as breathing, heartbeat,and body warmth) to support their belief that life was still presentand allow them to hope that their spouse or child would recover. Asone participant commented, “The heart is still beating, butwhy is [he]not alive?”

One study examined the value of families’ observing bedsidetesting of brain function to help them understand that death hadtaken place [14]. Yet, for some, their own preestablished beliefwhether death had already occurred took over. “We all knew he haddied, and the doctors only confirmed this, after the tests wereperformed.” Family members choosing not to observe appeared tostill regard the patient as a living being or were fearful that what theymight see would seriously distress them: “You are doing a procedureto inflict pain, and I think it is too much to bear watching them hurtyour loved one.”

For the coordinators counseling families, they regularly encounterwhat researchers described as a “knowledge deficit” regarding braindeath [15]. In a study based on extensive interviews, coordinators oftenencountered families who believed that the patient would recover.Because the doctors and hospital considered the patient deceased,coordinators met pressure to hasten the donation process, forcingfamilies to confront a decision they needed more time to make.

4. The media

Adding to the public’s haze has been the popular media. Eveningentertainment regularly exploits people’s deepest fears that organswould be removed from people prematurely declared dead. One studyexamined how sensitive people were to mischaracterizations of braindeath and the transplant industry based on their personal willingnessto donate [16]. They found ample examples in popular medical shows,such as Grey’s Anatomy (eg, a bike race leaves a man brain dead andthe medical staff debates whether to try to save him or harvest hisorgans) and House (eg, a woman contracts hepatitis C from the livershe received from her brother, then turns to the black market for areplacement.) Although those willing to donate were able to brush offthese influences, those not willing were statistically more likely tobelieve that these episodes reflect reality.

More troubling is the degree that major newspapers fosterconfusion about the brain death concept. A study of leadingnewspapers in the United States and Canada reviewed more than600 articles mentioning the term [17]. Only 2.7% (n = 14) of theAmerican papers and 3.6% (n= 15) of the Canadian papers presentedany standard definition of “brain death.” Although determination ofdeath was discussed in 20%, actual tests involved were rarelymentioned. Numerous examples were cited of patients dying twice:first, after neurologic criteria were met and later, after organ harvest(“A brain-dead woman who was kept alive for 3 months, so shecould deliver the child she was carrying was removed from lifesupport yesterday and died, a day after giving birth.” The Toronto Star,4 August 2005).

5. Public attitudes at large

Uncertainty about brain death exists more generally and canintertwinewith people’s mistrust of themedical profession. In ameta-analysis of qualitative studies [18], individuals described their beliefthat doctors would deliberately remove a patient’s organs, before thepatient had died, whereas others believed that life-saving medicalcare would be withheld so that patients could become eligible fororgan donation. More than attributing unethical intent is the simplefear of error. The authors describe how the concept of brain death wassingled out as a potential barrier to becoming a willing donor, with

questions being raised about doctors’ ability to determine if a patientmet the criteria for brain death. As one respondent stated, “braindeath may not be definitive, so if you do donate your organs, you havegiven away your last chance at life.”

But, despite the controversy over what constitutes brain death,mostAmericans have clear feelings that a persistent vegetative state is not alife worth living. In the aftermath of the Terry Schiavo case involving ahusband’s attempt to honor his wife’s wish not to be kept alive,numerous polls were conducted lending support for his cause [19].

• A CNN/USA Today/Gallup poll found 56% of Americans inagreement with the original removal of the feeding tube, witha question that was preceded by a description of Schiavo as “aFlorida woman who has been in a persistent vegetative statesince 1990.”

• A CBS News poll described Schiavo as being in a persistentvegetative state and found 61% agreeing with the decision toremove her feeding tube.

• A Fox News/Opinion Dynamics poll found 59% in favor ofremoving Schiavo's feeding tube, when told that she has beenin a so-called persistent vegetative state since 1990.

• An ABC News poll found 63% of Americans in agreement with theremoval, with a question that characterized Schiavo as havingirreversible brain damage, having no consciousness, and beingon life support.

This attitude about the quality of life flows into the attitudes aboutbrain death in a surprising way. One of the most widely cited studiesof public attitudes of the criteria defining death involved a telephonesurvey of 1351 Ohio residents regarding transplantation [20]. Peoplewere selected demographically to reflect the nation as a whole. Theinterview covered attitudes toward organ donation, trust in the healthcare system, understanding of brain death, and personal definitions ofdeath. Respondents were askedwhether a brain-dead person can hearand asked to choose whether brain-dead patients are dead, alive, or“as good as dead?” This last option was added after it was repeatedlyoffered by focus group participants during the study design process.The phrase was meant to describe a life devoid of quality, or one sohopeless that death would eventually ensue.

Respondents were also presented with 3 scenarios: a person deadby neurologic criteria, a ventilator-dependent person in a coma, and aperson in a persistent vegetative state with only a feeding tube. Theywere asked if they considered the patient alive or dead. They werethen asked if they would be willing to donate organs in general, and ifthey would be willing if a donor card had been signed. If a respondentanswered yes to either question, they were classified as a person whowas willing to donate.

The resultswere startling.More than 98% of respondents had heardof brain death, but only one-third (33.7%) believed that a person whohad been declared brain dead was legally dead. Furthermore, 28.1%thought brain-dead people can hear, and only 40.4% classifiedsomeone who is brain dead as dead. Rather, 43.3% characterizedpersons who are brain dead as “good as dead,” and 16.0% stated thatthey are alive.

With the first scenario, 86% said that the patient was dead, andalmost all would donate. Among the 14% who saw the person as alive,two-thirds would be willing to donate. With the comatose patient,57% characterized the patient as dead, and almost all would donate. Ofthe 43% who saw the patient as alive, close to half would donate theirorgans. With the patient in a persistent vegetative state, 66% believedthe patient was alive, and yet, 34% would be willing to donate. Anational study that same year produced similar results [21].

6. How important is “death”?

All these findings fan the debate among bioethicists over theauthenticity and necessity of brain death. Some have argued that

874 Special Section. "Death by Neurologic Criteria 1968 - 2014: Changing Interpretations" / Journal of Critical Care 29 (2014) 872–874

uncertainty even among neurologists over brain death [22] not tomention the general public argues that we should do away with the“legal fiction” and allow patient and family consent to permit organdonation when a patient’s neurologic injury has left them profoundlyand irreversibly disabled [23]. Others maintain that bioethicists’preoccupation with the brain death debate is a surrender of their“watchdog” role over the medical profession. Instead, they argue thatbioethicists should be questioning whether the organ “shortage”reflects the rapacious demand of the transplant enterprise in atechnology-driven health care system [24,25].

For the family at the bedside, the only real question is whether thedamage is permanent. When this is the case, physicians shouldprovide this message calmly and clearly. Once this fact is understoodby the family, and it will not always happen quickly, then taking thenext step becomes easier. If the requirement of a “death” can be putaside, more may be willing to donate. Without a “death,” some mighthold out hope no reason can justify. At least the conversation, asmessy as it might be, will be using terms everyone can understand.

Jack K. Kilcullen, MD, JD, MPHMedical Critical Care Services, Department of Medicine

Inova Fairfax Hospital, 3300 Gallows Rd, Falls Church, VA 22042Tel.: +1 202 465-9411

E-mail address: jkkilcullen@gmail.com

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