Fear, Ambivalence, and Liminality Key Concepts in Refusal to Donate an Organ After Brain Death

JONA’S Healthcare Law, Ethics, and Regulation / Volume 7, Number 3 / B 2005, Lippincott Williams & Wilkins, Inc.

Michal Rassin, RN, PhD Miri Lowenthal, RN, BA Dina Silner, RN, MA

ABSTRACT The refusal to donate an organ is a phenomenon in need of exploration and explanation. This article refers to the major fear of becoming an organ donor in relation to a global culture perspective and to the Halacha (Jewish law). A theoretical critique about the ambivalence demonstrated by healthcare providers and families will discuss these concepts in relation to brain death, from the stages of hospitalization, through the period prior to the assertion of brain death, ending with brain death, and its perspective as a liminal situation. Finally, we conclude that nursing practices during the care of the ‘‘brain dead’’ patient, and toward the patient’s family, should convey an unequivocal message. That is, brain death describes irreversible cessation of all brain function, and therefore, the patient becomes a dead body and can be treated as a potential organ donor......

. n the 18th century, the burying of living people. The . Michal Rassin, RN, PhD, is from the Nursing . Research Unit, Nursing Management, Assaf . Duke of Mecklenburg is- required sign of death was the . Harofe Medical Center, Be’er-Yaakov, Israel. . Miri Lowenthal, RN, BA, is Transplants . Coordinator, Assaf Harofe Medical Center, sued a decree forbidding rotting of flesh and death spots. . . Be’er-Yaakov, Israel. I . Dina Silner, RN, MA, is Director of swift and early burial, demand- At those times, many countries . . Nursing, Assaf Harofe Medical Center, . Be’er-Yaakov, Israel. ing that 3 days pass between the adopted this practice and for- . . Corresponding author: Michal Rassin, . RN, PhD, Nursing Research Unit, Nursing clinical assertion of death and bade burial on the same day of . Management, Assaf Harofe Medical Center, . . Zrifin, Be’er-Yaakov, 70300, Israel burial. The aim was to prevent death in their criminal laws.1,2 . (e-mail: [email protected]).

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Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Death is not a distinctively clearcut event per se, but donor before there is a chance to recover from a disease a process. Biologically, there is a different sensitivity of or critical injury.1 organs to anoxic-metabolic changes, resulting in differ- Physicians also have a fear of wrongfully determining ent times of organ death. It was conceived that there is a death. For many years, they practiced Maimonides’ no way of separating the death of the person from the recommendations, and waited until the body cooled— death of the organs, and that the assertion of the time of in this way, they dealt with the fear of a wrongful death is possible only after all the body cells and organs determination. Today’s modern equivalent for the have died. This conception resulted in the demand to cooling period is the time passing from the moment delay the burial of the deceased for 3 days.1,2 the critical patient is declared brain dead, to the Eight hundred years ago, when Maimonides (the transplanting of his organs. This period can span about major Jewish physician and philosopher in the 12th 12 to 36 hours, while the deceased is connected to century) recorded death as a cardiac and respiratory equipment to maintain the viability of the organs.1 arrest accompanied by the body cooling, he settled the Determination of brain death, followed by the re- standards for the diagnosis of death, which continue to quest for organ donation, occurs in an entanglement of be used by providers today.1 medical, philosophical, religious, cultural, social, and An opposing view developed, consisting of the spiritual aspects. The Jewish religion raises 3 main method of diagnosing brain death. French investigators reservations concerning brain death: in the Halacha were the first to describe brain death in 1959 as Coma (Jewish law), the rulers are divided in determining that Depasse´—state beyond coma, but they did not equate the total lack of function of an organ will determine the this condition with death itself.2 In time, the ad hoc moment of death. There are Rabbis who consider the Committee of the Harvard University Medical School brain death diagnosis by physicians today as not defined irreversible coma, with no discernible central sufficient in determining the death of a person, and nervous system activity, as a new criterion for death in the person is perceived as half dead and half dying. 1968, which has since been used as a basis for diagnosis Therefore, there is no possibility of extracting organs for of brain death.3 The view of brain death as human transplant, while the heartbeat is present, in fear of death refers to the cardiac activity after cerebral ruin as speeding death.8 Secondly, according to the Halacha, reflexive muscle activity, void of essential life, thus not there is a prohibition against suspending the burial, and qualifying as evidence of the continuation of life.2,3 there is an edict to bury the deceased as close as possible Currently, the term brain death is clinically and le- to the time of death.2 As such, the time passing from gally accepted worldwide, which allows for the avail- determining brain death to the burial might be several ability of organ transplants.4 Nevertheless, the refusal to days, an aspect perceived among Jews as desecrating donate an organ is common, and in certain areas, the the deceased’s honor. Thirdly, some suggest that the incidence of refusal has grown over the years.5 In Israel, source of hesitation about donating organs among the willingness to donate organs is 50% lower, relative practicing Jews lies in deeply rooted feelings character- to Western countries,6 and the rate of donor cardholders istic of the Jewish folk, who believe in the afterlife (the is only 4% of the general population in Israel.7 coming of the Messiah), which brings about a reserva- Therefore, the gap between the supply of organs tion out of fear of reaching the grave without all the and the demand by those who wait for them has grown, body organs.7 In the Asian cultures, there also exists fear as the main source of organ donations is from donors and doubts concerning the condition of oneself in the who have suffered brain death, with preservation of afterlife, when organs have been removed.9 other organs, which might be donated. The refusal to donate is a phenomenon in need of exploration and Ambivalence explanation. This article will review and discuss 3 key concepts in relation to refusal to donate an organ: Although more than 4 decades have passed since the the fear of becoming an organ donor; ambivalence criteria for diagnosing brain death were acknowledged, about brain death; and liminality of the brain death and despite apparent public acceptance and under- condition. standing of the concept of brain death, accrued evidence shows that large audiences, even workers in the health ...... system, do not associate it with certain death, and when Literature Review confronted with the term’s meaning, most are confused.5,10,11 Lack of understanding as to the essence of The Fear of Becoming an Organ Donor brain death has been found in research to be the central cause for families’ refusal to donate the organs of their There is an ancient human phobia of being buried alive. loved ones. This fear resulted in the French law requiring a day’s Organ donation typically occurs in 2 potential sit- delay before burial. This law, in the days of Napoleon uations: the first relates to the personal donation de- Bonaparte, set a cooling-off period of 24 hours between cision, by means of signing a donor card; the second the declaration of death and the burial or autopsy. The deals with the situation when the family has to decide modern variation of this fear is in becoming an organ about the consent to donate the organs of a next of kin.

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Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. In most European countries, the opt-out system Brain death diagnosis further complicates the ability for organ donation prevails, according to which it is of families to decide on organ donation, because the customary to extract organs for transplants from the deceased continues to exhibit signs of life, which are deceased based on the assumption that a lack of refusal not expected in the dead. Several studies reported that in life amounts to presumed consent when dead. In families did not perceive the body as dead, because it contrast, in an opt-in system, the person is deemed a was breathing (although it was through a machine), the donor only if one signs a document in which he skin complexion was pink, and body was warm. In expressly consents to donate his organs after death.6 addition, the absence of an external injury and the In Japan, even if one decides to donate organs and whole appearance of the body made it difficult to carries a donor card, the family is entitled to decide accept the diagnosis of death.10,11 whether to donate organs after one’s death. This Apart from the familiar clinical signs of death like overriding of the expressed wishes of the deceased by a cold body and no heart beat, death has social char- the family represents sanctioned disregard for the acteristics including parting from the living, covering autonomy of the individual.12 the deceased’s face with a sheet, and disconnection In England, organ donation depends on the estab- from medical equipment. These are marks which enable lishment of the individual’s will by signing of a donor the layperson to perceive death in a social manner.13 card, or a statement printed on the driver’s license. Brain death lacks the familiar clinical and social signs However, it is customary to appeal to the family of death, consequently, it blurs the border between life members for donation confirmation, and to determine and death, and can lead to the disruption of the social whether they oppose it.10 Similarly, in Israel there is the order. common practice of notifying the donor’s family of his A phenomenon in which a person feels confused signature on a donor card, and receiving their explicit with conflicting knowledge and feelings is noted in consent to the organ donation.7 Thus, a situation is the psychosocial literature as ambivalence. It results created in which the family has the most power in from the inability to categorize the individual.14 In relation to the organ donation decision, regardless of ambivalence lies the notion of the Cognitive Disso- the deceased person’s expressions of intent. nance Theory, which suggests that an absence of ra- When family members are aware that the deceased tional constancy, or a conflict between 2 cognitions, decided to donate organs, it eases their decision, for it results in a stressful, uncomfortable, and obscure helps them fulfill the deceased person’s wishes, thus, in state.15 Some suggest that ambivalence is typically a most cases, they will consent to donate. In other cases, paralyzing and freezing state, rather than a trigger for when the deceased person’s will is not known to the action.14 Yet, because it involves psychologic discom- family, they tend to decline the donation request.10 fort, there are people who tend to react unequivocally Previous studies showed that families who had to in a manner that defuses the sense of ambivalence. decide on the donation of their loved one’s organs due Findings of studies, conducted among family mem- to brain death reported confusion on the meaning of bers, show that the diagnosis of brain death caused the diagnosis. Some suggest that lack of understand- difficulties and dissonance among the families asked ing regarding brain death is related to the refusal to to donate organs.16 donate. Furthermore, ambivalence arises from the perceived For example, in a multiparticipant study that included violation of the rules in which healthcare professionals, 403 family members of patients who were diagnosed as whose task is to heal, serve as organ preservers. The brain dead, 28.3% of them managed to explain the providers may have ambivalent reactions which seem meaning of the concept, brain death, correctly. However, irrational, given the conflicting situation.14,17 60% of the family members made statements indicating The healthcare staff is perceived as having a vital task that they thought their loved ones were still alive. The in helping families in their understanding about brain most common statement that exemplified the lack of death.16 However, most of the participants in one study knowledge in families was the belief that brain death quoted inaccurate information received from providers, is not like real death. 29.5 percent agreed with the such as the perception that if the patient emerges from statement that a person is dead only when the heart the critical state, he or she might remain in a ‘‘vegetative stops beating and 12.5% of the participants accurately state’’ for the rest of his or her life. In that situation, it explained brain death, noting that although they appears the staff became confused between the 2 understood the meaning of terminology, they did not terms—brain death and coma.11 Other families inter- accept it as representing their relative’s clinical state. preted the nonverbal communication of the staff as Connections between accurate definition of brain death indicating a chance of the patient’s recovery.10 The and higher education were identified. Yet, no connec- staff ambivalence that can be exhibited with a diagno- tions were found between age, gender, ethnic descent, sis of brain death is illustrated by a physician who and income.11 Other studies described the misunder- said ‘‘undoubtedly the patient’s situation will deterio- standing among families by the connection between the rate further on.’’18 This suggests the question: ‘‘How refusal to donate and the family’s assumption that their does one progress to become more dead than dead?’’ loved one might recover from brain death.12 and exemplifies the confusing messages providers

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Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. sometimes communicate to others in their surroundings as an EEG diagram, accompanied with comparisons to when dealing with brain death. normal examinations and explanations, to illuminate the totality of the brain death, and this may sharpen the Liminality staff’s perception of this condition. The nurse manager should also encourage development of education One study explored the way nurses in the intensive materials for better family understanding about brain care unit (ICU) dealt with the stages of treating a death including an accurate definition as an official and patient with a head injury, who later on was identified legal death. Furthermore, there is a need for evidence- as a potential donor and finally declared as a body in based protocols to guide nurses in both the liminal and a state of brain death. The first period in which the the declared dead states transition. This will help patient was perceived as having a head injury is not nursing staff deal with their own feelings of ambiva- problematic, for the nurse’s duty and expected behav- lence regarding these patient care situations and will ior are clear, and fit the culture of the ICU, based on minimize the sending of mixed messages to the family saving lives. The nurses enter the gray area prior to about the patient’s prognosis. declaring brain death, when the patient begins dying The multidisciplinary team’s approach should be fo- but is not dead yet. In this stage, the nurse is in an cused on ensuring that the family understands the ambiguous state, unclear whether to keep on treating patient’s grave prognosis or brain death some time the head injury or switch to a treatment aimed at before they are offered the option of organ donation, and preserving the body for organ donation.19 In other exploring what a family understands about the term words, this situation creates the inability to clinically ‘‘brain dead.’’ The nursing practice and social behavior classify the patient in a distinct category of living or during treatment and toward the family should bear a dead, by which it will be possible to treat him. constant and unequivocal message concerning the death People whose state is undefined, who live between 2 of the patient, avoiding conveying misleading and con- categories, were described in the anthropologic litera- tradictory messages. Development of guidelines can help ture as liminal.20 Van Gennep (1960) claimed, that in the staff learn how to manage the psychosocial aspects ordinary situations, things and people are classified of the treatment of a body kept for transplant organ into one distinct category. Yet, there are cases, in which preservation. The aim is to create behavioral categories a person’s state is liminal, that is, not here, not there— for the nurses, especially in avoiding the communication their identity undefined because of the lack of status of ambivalent messages to the family. For example, it and the obscurity.20 Especially in our binary society, might help the family understand the meaning of brain demanding a resolution to one side or the other,2 the death by using a term that dose not convey multiple liminal state of the brain dead person generates senses about the patient’s condition, which the term ambivalent responses by healthcare providers. brain death does. An alternative is to say simply that the The assertion of brain death is perceived by the nurses patient is dead based on neurologic criteria.11 of Day’s19 research as a changing point in the status of Moreover, it is possible to reduce the ambivalence the patient: from person to a body. Although most of typical of the staff and families in dealing with the brain the participants related to the body as an object, and dead body by sharpening the blurred boundaries identified brain death as the time-point of the official between life and death as follows: Because the body and legal death, the status of the body in relation to the lacks the characteristics of death, it has to be distin- nursing treatment was not clear and was accompanied guished from the living by means of signs connected by many doubts. For instance, the nurses had to con- socially with treating the dead. It can be parted from the vince themselves not to speak to the patient while he was living patients, in a separate room, or at the end of a room treated, and they had to reach an understanding that he divided by a curtain. There is the possibility of covering would not benefit from their treatment. This implies that the face of the deceased with a sheet, a customary the nurses found themselves leaning on known work behavior of the staff in treating the dead. Whether this habits, when they understand that these do not fit the proposal would lead to less ambivalence and confusion new situation; in contrast, they have no ready behavior by therapists and families should be studied. categories for such a situation, and no guidance as to The nurse manager plays an important role in helping how to treat a socially living body. Moreover, such her staff and the families of brain dead patients in deal- treating behaviors might convey to the families mixed ing with the fear, ambivalence, and liminality associated messages that this is a living person and not a body. with this condition. Given the worldwide shortage of In conclusion, nurses play an essential role in organ organs available for transplant, these actions are an procurement because of their position as first point of important part in helping to assure that all families make contact with the critically ill patient and their relatives. fully informed decisions about organ donation. Nurses have to recognize brain death as a clear demarcation point at which a patient becomes a dead body and can be treated as a potential organ donor. It REFERENCES might be helpful for nurse managers to make available 1. McAlister V. Maimonides’ cooling period and organ re- scientific proof for the staff, such as a head CT, as well trieval. Can J Surg. 2004;47(1):8-10.

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