Kenneth V. Iserson
Death, especially when it is sudden and unexpected—as often happens in the emergency department (ED)—shocks and devastates patients’ family and friends. For them, it is a sentinel, life-changing event, with every nuance burned into their memories. As Thomas Mann wrote, “A man dying is more the survivors’ affair than his own” (1). Furthermore, such losses may deeply affect emergency medicine personnel, despite their almost constant exposure to life’s disasters. These factors make death notifications and dealing with the survivors both vitally important and extremely difficult. These strong reactions magnify both the importance and the difficulty of death notifications.
INTERACTING WITH SURVIVORS
Even though notifying survivors of a loved one’s death is one of the most difficult parts of their job, emergency clinicians rarely are taught the skills necessary to perform this task. Death notifications are emotionally draining: 70% of emergency physicians find notifying survivors to be personally difficult. This is not surprising given the results of one study that found only one-half of them received any type of death-notification education in medical school and only one-third received any such training during residency (2). This educational deficit occurs even though there are roughly 2.5 million deaths in the United States annually, with about one-third of them occurring in EDs (3).
TELEPHONE NOTIFICATIONS
The first interaction after a sudden, unexpected death may occur when emergency medicine personnel contact the survivors (4). This often must be done via telephone. Yet, this can be problematic, not only because the telephone call has to convey shocking and unexpected news, but also because the caller and the recipient are strangers. The person designated to make the call should first identify him- or herself and establish the identity of the person with whom he or she is speaking. Always deliver the news to an adult and try to determine whether someone is present to provide emotional or physical support.
One question consistently arises: Should emergency medicine personnel notify someone of a death by telephone? Most Americans, especially if they live nearby the hospital, prefer to be told that the patient is “critical,” and then to be told of the death when they arrive at the hospital. Thus, callers are often advised to say that the patient is in critical condition and that their presence is requested. The caller should slowly recite any necessary contact information and tell the recipient to write it down; then they should have them repeat it back. However, if the recipient demands to know whether the person is dead, the notifier must answer the question truthfully. The majority of those who wish to be told immediately are men.
When calling relatives outside of the local area, tell them of the death. They should never be put in a position of rushing to the side of a “critical” or “dying” relative who is already dead.
If no one is at home, or if no adult is present, the notifier should leave a message. The only information appropriate to leave on a telephone or electronic (i.e., text, email) message system is the message that a specific person, identified by name or position (e.g., the son of George White), should return the call as soon as possible. Leave the name and telephone number of someone who will be available for the next 24 hours and who should have information about the death. This may require providing a telephone number for the main ED (with instructions to ask for the charge nurse) or for the hospital’s chaplain or social worker. Within the hospital or the ED, there should already be a system for each shift to pass on relevant information to the next. Protocols and other materials (English and Spanish) are available to teach and to aid emergency medicine telephone notifiers (4–8).
MEETING SURVIVORS: THE “FAMILY ROOM”
When survivors arrive, a medical staff member, chaplain, social worker, or specially trained volunteer should be available to meet them immediately. Such greeters usually were not involved in the resuscitative effort (9). They should memorize an introductory message to use when meeting survivors. The format will always be the same; only the specific information changes. Here is one example:
Mr. and Mrs. Smith? I’m [greeter’s name and position]. The paramedics brought your son to the emergency department after he was involved in a bad car crash. The trauma team that has been working on him tells me that he was found unconscious and has not awakened. I’m not sure about his other injuries. We’re going to go to a quieter area and I’ll get someone from the team to speak with you (4).
The key points to remember when delivering this message are to identify the survivors, identify the ED representative, give only basic information, and guide the survivors to a quiet place. This quiet or “family” room is a place wherein survivors can wait until someone needs them (e.g., to give them updates on resuscitative efforts or the news about the death) and wherein they can have some privacy to grieve. All EDs should have a dedicated family room equipped with comfortable seating, tissues, and a telephone with long-distance access (4).
VIEWING RESUSCITATIONS
Traditionally, survivors have not been permitted to view resuscitation attempts. That attitude, however, is gradually giving way to a more enlightened view.
The argument against allowing survivor onlookers has been that resuscitations often involve large teams with too many people and unclear communications, and with team leaders who are unwilling or unable to make firm, timely, and rational decisions (10). Having family members present supposedly adds another complication and introduces the possibility of legal consequences stemming from an onlooker fainting, or otherwise becoming another patient. Those objecting to survivor presence during resuscitations have also raised concerns about correctly identifying survivors and about patient privacy, especially in light of HIPPA (the Health Insurance Portability and Accountability Act of 1996). They also are concerned that survivors may misinterpret the team’s discussions or actions. Finally, team members may feel that family members will judge their actions (11). Emergency medical systems personnel, however, routinely encounter this during resuscitative attempts.
Despite such concerns, studies in both the United States and Britain have shown that nearly all survivors who witnessed emergency medicine resuscitative efforts found the experience helpful. As John Jesus wrote, “Resuscitation efforts may actually benefit families more than they have the potential to benefit the patients” (11). Many survivors (76%) thought that witnessing the resuscitation facilitated their grieving, and 64% felt that their presence was helpful to their dying family member (12). Psychological tests of survivors who witnessed resuscitation attempts, performed at 3 and 9 months after the event, showed that this group had fewer episodes of “intrusive imagery,” such as flashbacks of the events leading to the death, than did those not present at the resuscitation (relatives in the control group). They also had lower levels of anxiety, depression, posttraumatic avoidance behavior, and grief (13).
The American Heart Association now endorses giving family members the opportunity to be present as long as the patient has not previously objected. This position stems from the benefit families can derive from their presence during resuscitation attempts, the lack of harmful effects on them from viewing these resuscitations, and their quasi-right to be there based on the nature of their relationship to the patient (11,14,15).
Moreover, the presence of these survivors does not hinder the resuscitative efforts and often leads to quieter, more effective team efforts. Concerns about properly identifying survivors is misplaced, since physicians, as well as EMS personnel, can rely on the “reasonable reliance” concept (what a prudent person would believe and act on). In addition, HIPPA permits revealing health information about unconscious patients to family if there is an expectation that the patient would approve. Finally, while physicians may not bear legal responsibility for syncope survivors, having a staff member accompany them and ensuring that they are seated is good practice (11).
Experience has shown that survivors who witness ED resuscitative attempts never question whether the team “tried hard enough,” do not ask whether the person is really dead, and spend less time in the ED trying to come to terms with the death. Moreover, survivors may actually thank the emergency medicine team for their efforts, a situation that rarely occurs under other circumstances, and the emergency medicine staff never has to “notify” survivors of the death.
The general procedure is as follows:
1. Ask survivors whether they want to view resuscitative efforts.
2. If they do, quickly brief them about what they will see, and assign a knowledgeable staff member (usually a chaplain, social worker, or ED nurse) who can answer their questions to accompany them.
3. Provide a chair so they can sit, particularly if they are elderly, and allow them to leave and re-enter as they wish.
4. Staff should attempt to cover as much of the patient as is compatible with effective resuscitative efforts.
5. Advise team members that family is in the room.
6. Encourage the survivors to talk to and touch the patient.
7. Decisions to pronounce the patient dead, while often discussed with the family, are generally announced by telling them “we must stop now.” Never ask family members whether to stop the resuscitative effort; this is purely a medical decision.
Experience shows that the process of having key survivors view resuscitations often works best if EMS personnel notify the receiving hospital in advance of such a request. This allows the emergency medicine team time to decide whether they will permit it (if it is not policy), to advise team members, and to designate someone to escort the relative to the resuscitation room at the appropriate time.
If the family is present when it is clear that resuscitative efforts should cease, explain this to the family before supportive measures are discontinued. This provides them with a chance to “say good-bye” before the death is pronounced. Such procedures are standard in most pediatric EDs, as well as for pediatric resuscitations performed in the majority of general EDs.
NOTIFYING SURVIVORS IN THE ED
When key survivors have not witnessed resuscitation attempts, the most common postresuscitative scenario in EDs is that emergency medicine personnel must inform survivors of the death. But, unlike the relationship found in most in-hospital patient deaths, the emergency medicine personnel usually have had no chance to establish a “bond” with the survivors. Instead, they must quickly establish survivors’ confidence in them while at the same time delivering devastating news. Staff should project an image of one “who has the information” rather than acting authoritatively or coercively. Emergency medicine staff should strive to eliminate any perception of racial, social, or cultural differences between them and the survivors, as this may lead to a sense of distrust (16).
One technique medical personnel often use to deliver the news about sudden unexpected death is that of “presaging,” or leading up to this news by dribbling out bits and pieces of bad information over a very short period of time. Also called “hanging crepe,” this technique allows survivors to gradually understand that something very bad has occurred.
“How much emotion should I show when delivering the news?” is a frequently asked question. During resuscitative attempts, caregivers must put their emotions “on hold” to perform their duties in the most effective way for the patient. If the resuscitation is unsuccessful, it is okay to express some emotion when delivering the news of the death to survivors, but staff must retain enough control to help and support the family.
BARRIERS TO EFFECTIVE ED NOTIFICATIONS
Emergency medicine personnel are at a distinct disadvantage when dealing with survivors of sudden unexpected deaths. First, the physicians and nurses in emergency medicine are usually aggressive, action-oriented people who want to see an instantaneous return for their expended energies. They often see a patient’s death as a personal failure—an assault on their sense of accomplishment and satisfaction—and respond accordingly (17). In addition, except in rare instances, they have never met either the deceased patient or the survivors. Other barriers are listed in Table 169.1.
TABLE 169.1
Barriers to Effective ED Death Notification
Resuscitative efforts effectively halt most other activity in the majority of EDs. Once resuscitation is terminated, the clinicians may be overwhelmed by the onslaught of other patients whose problems demand their immediate attention. Because of this backlog of sick patients who have been ignored during the resuscitative attempt, survivors are often given too little attention. Compounding this is the fact that emergency physicians’ coping mechanism is often to immediately return to normal work activities (18).
SURVIVOR REACTIONS
Intervention strategies to facilitate survivors’ grieving processes may help them avoid significant future psychiatric sequelae. Survivors’ overall reactions are variously described as grief, mourning, and bereavement. Grief denotes the intense emotions and physical symptoms associated with the loss. Mourning is a social expression of grief. Bereavement is the total normal response to loss.
Grief is a normal process initiated by major personal loss, such as the loss of a spouse, parent, child, or significant other. Grieving is characterized by an intense, in-depth review of the survivor’s relationship with the decedent. A grieving person repeatedly reviews memories of the decedent and only gradually confronts each one with the realization that it no longer corresponds to something real. The grief response may also include physical ailments and guilt, such as feeling responsible for the death or for failing to resolve interpersonal conflicts with the decedent (Table 169.2). This process continues until the grieving person is gradually reconciled to the loss. Grieving serves the psychological purposes of breaking emotional ties with the decedent and reestablishing attachments to living persons. Most survivors’ symptoms resolve without the need for specific professional interventions. Some EDs have invited survivors back to answer their questions several months after the death, although whether this is beneficial remains uncertain (19).
TABLE 169.2
Common Grief Reaction Symptoms and Statements
Grief expressions are determined by cultural mores (20). Some people express grief histrionically, with loud crying and sobbing, whereas others remain still, with little visible emotion. Although they display no overt signs, survivors may be deeply affected and grieving over the death (21). Several responses can be perplexing and may be misinterpreted by staff. A frequent initial reaction is denial, a psychological defense that closes off perceptions of painful immediate reality. The survivor may question the physician closely for proof of the decedent’s identity or may continue to refer to the decedent as if he or she were alive (22). At other times, survivors display antagonistic and angry feelings toward staff members, accusing them of being negligent or of not doing all they could have done. This anger often represents the survivors’ own unconscious anger toward the decedent for abandoning them, or it may stem from guilt about unresolved conflicts with the decedent.
Emergency medicine professionals may have difficulty in coping with initial survivor reactions, such as withdrawal (inaccessible, mute, refuses to listen), denial (of fact, feelings, reality), anger (directed at nurse, doctor, self), isolation (feelings of aloneness), bargaining (“I’ll pay anything not to have . . .”), inappropriate responses, guilt, and crying. Although emergency medicine personnel often fear physical violence toward the notifier, this rarely occurs. However, violence harmful to a survivor, such as punching a wall, or among survivors is common. Teenage boys and young adult men seem to be the most prone to expressing their grief in these self-destructive manners.
Educate survivors about the symptoms of grief and reassure them that these symptoms are normal. Depressed mood, sleep disturbance, crying, difficulty with concentration, loss of interest, anxiety, and weight loss are the most common symptoms (23). Provide anti-anxiety or hypnotic medications to survivors only if requested and only after a formal evaluation of the individual involved. Limit the supply to that needed for only a few days.
Arrangements should always be made for other family members or friends to stay with a survivor for the next 24 to 48 hours, because suicide is a possibility, especially for a spouse who has been married for many years (24,25). If a survivor appears to be suicidal or homicidal, ask them about this and, if appropriate, obtain a formal psychiatric consult.
Support groups may help some survivors. The ED should have a preprinted list of telephone numbers and addresses of local and national support groups that they can give to survivors.
VIEWING THE BODY
Identifying the patient can be very difficult in some cases. Many patients needing resuscitation arrive in the ED without identification, usually either because they had none available or because the police have it. Care must be taken to corroborate the decedent’s identity before any survivors are notified. To do this, emergency medicine personnel or the investigating officers may have to ask survivors about their relative’s general characteristics (height, skin, and hair color), identifying marks (scars, tattoos, birthmarks), or deformities (prior amputations).
Making decedent identifications is vital after disasters such as the World Trade Center attacks or 2004 Southeast Asian tsunami, in which many bodies are missing or unidentified. Survivors may feel “emptiness, frustrated or unresolved grief” that can be partially assuaged only by identifying the dead (26–28).
In the ED, offer survivors the opportunity to view the body (4). Viewing the body facilitates the grief reaction. If they are reluctant or unwilling to do so, do not make them feel that their decision is wrong. Many survivors prefer not to view the body (29). Never refer to the decedent as “the body” or “it.” Instead, use the person’s proper name or a personal pronoun. Warn survivors about the visible effects of trauma and resuscitation, and also of postmortem skin changes such as cyanosis or livor mortis.
Prepare the body for ED viewing. Remove blood and emesis before family members see the body. Describe any medical equipment that must be left in place until the medical examiner completes the necessary postmortem examination and explain why it is still there (30). Cover the body with a sheet or blanket, but leave the head and hands exposed for the family to touch, and encourage them to do this. Move the body to a private room, if possible. Let them cut off a lock of hair, if requested. Allow family to be alone with the body, unless there are legal reasons (e.g., ongoing police investigation) for not doing so. Staff should remain available nearby, but outside the room, to provide support to the family. Most family members will leave within 15 minutes.
MAKING FINAL ARRANGEMENTS
Part of death notification involves answering survivors’ questions in a knowledgeable manner. To do this requires knowing something about body disposition options, medical examiner/coroner laws and procedures, and organ and tissue donation (30–32). These subjects are rarely discussed in medical or nursing curriculums.
After the family has viewed the body, it is then appropriate to have them to sign any necessary documents (4,22). Many survivors are concerned about postmortem paperwork, so having an experienced person guide them through the process is very useful (29). Offer the use of a telephone to call a funeral home. Ask again if there are any questions. Generally, no question should remain unanswered, unless the information is unavailable. Tell them how to reach you if they have questions at a later time.
Explain the roles of medical examiners and the police in cases of sudden, unexpected, or violent deaths and how the decedent’s belongings will be handled. If you will be signing the death certificate, tell them the cause(s) of death that you will list. If an autopsy is mandatory, as it is in many ED deaths, explain that the medical examiner will determine the cause of death at a later time. If the cause of death is unclear, autopsy results will be helpful, inform the family of this and ask them for permission for an elective autopsy (30).
The issue of organ and tissue donation should be broached before family members leave the hospital; in fact, most states require that this option be addressed. Two ways to broach the subject are to ask, “Has your family ever discussed organ or tissue donation?” or “Our hospital offers organ and tissue donation. Would you like to discuss this further with someone from the transplant program?” If the family expresses an interest, contact the appropriate agency immediately.
Have lists of clergy and housing accommodations available for out-of-town survivors. Unless personal effects and clothing removed from the body are needed by the medical examiner or for a police investigation, these should be given to survivors. Advise them of the condition of clothing and place it in a paper or plastic belongings bag; never use a trash bag. Tell survivors when they have completed everything they need to do and that they may leave whenever they like. The physician or a designated staff member should accompany the survivors to the door.
DEATH-NOTIFICATION EDUCATION
Although it is rarely done (4,33), educating emergency medicine professionals about sudden-death notification is vital, as doing it poorly can adversely affect both the survivors and the healthcare professionals involved. Such education succeeds when it is combined with direct observation during actual death notifications, subsequent evaluation, feedback and, when necessary, further education (34). Educational resources and materials to help remind ED staff of the steps involved are available (4–8,32,35).
The easiest and most effective way to provide this education is to add a module to the resuscitation courses that emergency medicine personnel must take on a periodic basis (34). Such education can help the staff deal with their own emotions (e.g., feelings of defeat, guilt, impotence, and incompetence) and fear of death, and with survivors’ reactions. It can also help avoid the common problem of emergency medicine staff trying to reduce their own stress by delaying the news, thus increasing the family’s anxiety, or by rushing into the room unprepared and presenting the news in an awkward manner.
A staff that is aware of the dynamics of grieving and of survivors’ needs can facilitate the grief process, cushion the trauma of loss, and establish a basis for a healthy grief response (4,36).
Common Pitfalls
• Poor communication.
• Remarks such as “Everything will be okay” or “It was God’s will,” which may prematurely seal off the grief response.
• Failing to use a “D” word (Death, Dead, Died) to clearly indicate that the patient has died.
• Not allowing and encouraging survivors to express their feelings.
• Impeding or impairing survivors’ ability to grieve by routinely prescribing medication.
• Failing to address survivors’ support systems.
• Not offering family members the option of organ and tissue donation.
ACKNOWLEDGMENTS
The author gratefully acknowledges the contributions of Galen Press, Ltd., Tucson, Arizona, to the content of this chapter through permission for reproduction of much of the material used in this chapter.
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