Grief Support in the ED

A worried father is brought to a private waiting area. The physician arrives and says, "Your daughter is dead and your wife is in the ICU." Common sense would dictate otherwise, but this approach to delivering bad news occurs regularly in busy EDs where staff are emotionally fatigued and training on grief support is lacking. ^{[1, 2]}

The ED approach to the support of family and friends of patients who are dead or dying is based on common sense, but an organized framework for speaking with surviving family members and friends will ease the process for all concerned. ^{[3, 4]}

Additionally, information may be needed from family members, such as the patient's wishes or their wishes with regard to organ donation or autopsy. Having a rehearsed, systematic, and consistent approach to the situation of grief in the ED is helpful to both the practitioner and the family. ^[5]

ED personnel are entrusted not only with the care of the patient but also with family members. Many studies show that an unhealthy grief response may lead to increased morbidity and mortality among grieving family members. ^{[4, 6]} Words and actions of ED staff have a tremendous impact on the grief process; the family gives tremendous weight to the words they hear, often remembering them for the rest of their lives. ^[7] A survey found that when a loved one died, 70% of survivors felt they had received good care in the ED, but the other 30% complained that staff members were nervous, evasive, guilty, cold, and clinical in their interactions. ^{[8, 9, 10]} Research on causes of poor communication performance reveals fatigue and inexperience led to increased stress during delivery of bad news; however, fatigue and burnout (depersonalization), but not inexperience, were more likely to result in poor communication performance. ^{[11, 12, 13]}

Death in the ED takes its toll on staff and family. The death of a patient produces feelings of guilt, anger, and a sense of failure. Staff may be reminded of personal losses or threatened losses. Over time, ED staff develop emotional defenses to minimize discomfort, and, in extreme cases, develop cynicism, numbness, and professional dissatisfaction. While little evidence exists to support the effectiveness of debriefing after emotionally traumatic events, there is increasing appreciation for immediate and delayed discussions among the staff to decrease the effects of the death on staff. ^[14] Specific education and training can help health care workers deal with feelings about suffering, disappointment, failure, and death in a satisfactory way, resulting in improved physician wellness and physician performance. ^[15]

For excellent patient education resources, visit eMedicineHealth's Mental Health Center. Also, see eMedicineHealth's patient education article Grief and Bereavement.

Emergency physicians (EPs) see more death experiences than any group except oncologists. ^{[16, 17]} In 2004, 176,000 deaths occurred in US emergency departments. Yet, one third of EPs surveyed in 1993 reported no specific residency training to help them with the emotions of caring for dying patients. ^[18] Students, residents, and physicians continue to report that delivering bad news is stressful and they are undertrained for the task. ^[19] The ED presents special challenges because of its setting and type of patients.

Often, family is present when a patient dies in the ED; EPs notify families 75% of the time. In an inpatient ward, doctors notify the family in person 20% of the time.

The comfort provided to the family and physician by an existing physician-patient relationship may be missing in the ED because the hospital, physician, and staff most often are unfamiliar and may not have the family's full confidence. ^[20]

Deaths in the ED often are sudden and unexpected; neither family nor staff has any opportunity to prepare for the death or the interactions that follow. ^{[4, 16, 17, 21]} In one study, only 7% of deaths were unexpected in the inpatient setting.

The amount of time an EP can spend with a bereaved family may be limited because unexpected deaths typically bring ordinary patient care activities to a standstill. When a resuscitation effort is stopped, other patients waiting a long time must be evaluated. The physician can feel a tremendous pressure to get back to work.

The ED is where medical staff are most likely to encounter the death of a child. In children who do not survive their first year of life, sudden infant death syndrome (SIDS) accounts for one third of deaths. ^[22] Trauma accounts for half of deaths in children aged 1-15 years.

These factors make the ED a unique place with particularly difficult conditions in which physicians and other staff must deal with death and dying. ^{[16, 17]}

Providing care to bereaved family and friends of a patient who dies in the ED includes many components. ^{[23, 24]}

Preparation

Before facing the family, personal issues of guilt, failure, and fear of death must be privately faced and personally acknowledged; if not they interfere with effective communication. The family wants, and has a right to expect, a calm and professional demeanor from the treating physician. To avoid presenting a cold clinical impression, caregivers must make a transition from medical crisis to the process of responding to a family's emotional trauma.

Before speaking to the family, prepare notes summarizing, in chronological order, the illness and the patient's response to treatment efforts and procedures. Seek out pertinent information regarding the identity of family members. Enlist the assistance of a nurse, chaplain, or social worker to share the emotional demands of the encounter.

If a language barrier exists, attempt to obtain a translator from outside the family and prepare the translator. If a family member is the only translator, acknowledge how difficult a task it is to hear bad news about a loved one and to explain the news to someone else.

When family is not present

In many EDs, a social worker or nurse makes the initial contact when family members are not present. How much information should be divulged at the time of the initial call is not always clear. One approach is as follows:

Give your name, the hospital's name, and the patient's name over the phone. Verify that the person on the telephone is a relative (or responsible close friend) of the patient. Ask what the person already knows. Give a brief description of events and treatment using understandable terminology. Recognize that family members usually imagine the worst (eg, their loved one is in pain, terrified, or otherwise suffering). Try to reassure the family using calm, relaxed, professional tones.

If the patient is alive, explain the current condition. If the patient is dead, a decision to divulge this information over the telephone must be made. No clear-cut consensus among experts exists. Some providers place truthful immediate notification above competing concerns. Others feel that death-telling should be done in person, where additional resources may be used to help the grieving family.

Make sure family members understand what has been said. Solicit questions and repeat what is necessary. Find out whether anyone is available to give support; encourage family members to call a friend to drive or offer to call a taxi. Give directions to the hospital, have the family report to you, and tell them not to drive dangerously on the way to the hospital. If the family must be notified of a death over the phone, find out early in the conversation if another adult is present. If necessary, give the same directions to the adult responding.

When family arrives in the ED

If possible, the family should be greeted by a staff member who can remain with them throughout their stay in the ED. Many families have expressed anger and feelings of helplessness when initially seated in a waiting room and then ignored. If possible, show the family to a private room with access to phone, tissues, and writing materials.

Condition updates

Keeping the family updated on the status of the patient while a resuscitation effort is underway is important because omission is a frequent complaint. Balancing the needs of the patient and the family can be difficult. Usually, someone can be sent to the family with a message of explanation that includes intubation, defibrillation, and invasive procedures.

In some centers, family members have been permitted to attend the resuscitation effort. ^{[25, 26, 27, 28]} This practice can introduce new difficulties, but it is becoming increasingly accepted, particularly in pediatric cases. The subject of family presence during the resuscitation is addressed later in this article (see Family presence during resuscitations). ^{[25, 26, 27, 28]}

Telling of death

A few basic concepts can be adapted to fit the personal style and preferences of each individual caregiver.

The physician attending the dying patient has the responsibility to tell the family of the patient's death. ^{[3, 4, 29]} This responsibility should not be delegated unless absolutely necessary, as the presence of the responsible physician is an important way of communicating to the family that the care of their loved one was taken seriously and that everything possible was done.

Without sufficient time for interaction, communicating about death in a careful and caring way is difficult. In a survey of provider practice, the average time allotted for telling of death was 15 minutes. ^[29] Some providers reported that they spend as little as one minute with the family after a patient dies.

The manner in which the news is delivered is very important. The medical facts are less important than compassion. ^[4] Survivors have said they would rather be informed by a nurse who seemed to care that their loved one had died than to be told by a physician who was knowledgeable about the facts but who seemed not to care. ^[9]

Whenever possible, all family members should be informed as a group. ^[3] Unless the family decides otherwise, friends should be asked to wait outside the room until the family has been notified.

Unless the situation is hostile, move away from the door. If possible, make sure everyone is seated, including the health care team. The team members should be introduced and family members should be explicitly identified.

Begin by asking family members their perspective of what happened. If additional history is needed, this is an appropriate time to request it. Obtaining any historical information may become impossible to obtain after the death has been acknowledged. Briefly, in chronological order, tell problems that occurred, actions taken and the patient's response to each intervention. Include the efforts of rescue squads. The gentle and gradual delivery of factual information facilitates an intellectual acknowledgment of death, after which survivors can react with normal grief.

Deciding how much detail to give to a family involves a delicate balance. Clinicians sometimes think details are unnecessary and disquieting, but survivors frequently complain that they did not receive explicit enough details of the patient's prehospital and hospital care. To whatever extent possible, reassure the family that the patient did not suffer or did not suffer greatly.

Confirm that their family member has died. It is extremely important to be clear by using language such as "dead" or "died." Allow silence. After you have delivered the news, try to say nothing for 30-60 seconds, thus providing time for the family to absorb the information. Ask if the family has any questions, and address each question asked.

Family reaction

Mourning is a culturally-based expression of grief. Some cultures consider it wrong to show too much emotion. In others, extreme outbursts are expected or required. Family members may react to news of death in different ways, with calm or hysteria, shock, anger, disbelieving, numbness, crying, or even with violence. ^[30] The response of physicians and medical personnel must be adapted to the needs of the situation. Some common reactions that may need to be addressed include the following: ^[30]

• Denial: This common personal defense mechanism allows assimilation of tragic information at a tolerable pace. Early phases of denial should be accepted. If denial persists beyond a few minutes, reiterate the facts. Be direct: use the words "died or dead." In the case of continued denial, viewing the body may help. Family members who experience persistent denial after viewing the body should not be left alone and may need professional attention.

• Anger: Families may direct their anger at anyone or anything, including physician and hospital. When this happens, it is important not to become defensive or to feel guilty. Principally, the family needs to know they are being heard, and acknowledging their feelings may help. Do not hesitate to have a security officer present if any possibility exists that family members may become violent.

• Guilt: Feelings of guilt should be discouraged. Studies have shown that exoneration by physicians can produce an enormous sense of relief. Emphasize that actions taken by the family were appropriate. Tremendous comfort can be given by emphasizing that the survivor did not cause the death, nor was it caused by any action of the survivor.

• Sorrow: Expressed by crying, sorrow is an appropriate response for the family, and it is often appropriate for the physician as well. Families will take tears as a sign of caring and compassion, not weakness. When the family expresses grief, the staff need not speak. Compassion does not always need to be conveyed in words. Presence can express caring. Using clichés, such as "he lived a good life" and statements that "everything will be okay," are neither helpful nor reassuring. They are considered false and condescending. Families usually respond well to simple statements acknowledging feelings, such as "you must feel terrible" or "I'm so sorry for your loss."

Viewing the body

Viewing the body can be painful but can reduce prolonged grieving by creating an increased sense of the reality of death. Before allowing viewing, blood should be wiped from the body, eyes closed, and resuscitation debris removed. Any devices that must be left in place for a medical examiner's review should be properly explained before they are seen. Rather than disturbing the family, their presence may actually reassure them that everything possible was done.

When speaking of the dead person, use the person's name, "him," or "her", but never "body" or "it." Warn the family that the patient may look different from their expectations. Give explicit permission to touch the deceased.

Families of mutilated patients should be warned carefully, but viewing still should be offered. Bandaging the injured area can minimize the need for family members to confront the fact of disfigurement. If possible, some whole body area should be available for the family to touch.

Viewing can be done in a group or individually. If possible, it should take place in a private place away from the treatment area. Initially, somebody should accompany the family to view the body. If privacy is desired, the person may withdraw but remain nearby. Children should be allowed to view the body if the family agrees. Reluctant or unwilling family members should be reassured that viewing is a highly personal decision and that a decision not to view the deceased person may be best for many people.

If the patient was a child, after wrapping in a blanket or dressing in pajamas, parents should be given the opportunity to hold the child. When parents are brought to see their deceased child, an attendant should be present, as this reduces additional grief.

Concluding process

Give the family an opportunity to ask last-minute questions and leave the door open for future contact. A business card will give them a contact in case questions should arise in the next few days. Several issues should be addressed before they leave the ED.

• Mortuary: Provide written information regarding release of the body to the mortuary.

• Autopsy: If an autopsy will be performed, it may be explained as an examination by a pathologist, who is a specialist with unique diagnostic skills. If the death is a coroner's case, give a careful explanation. Importantly, tell the family that, if desired, an open casket is still possible after autopsy.

• Tissue and organ donation: The law in many states requires that family members be asked about organ donation whenever the deceased is a potential donor. Although this can be a sensitive issue, many families are relieved to be asked about it. Family members rarely are offended to be asked, "Do you know if she wanted to be an organ donor, if that is possible?" Representatives from tissue and organ harvest organizations have a standardized approach they feel provides a higher percentage of donation. Work with your local organization to determine which approach is most feasible at your hospital.

• Good-bye: Families may be confused and unsure when it comes time to leave the deceased and the ED. When nothing more remains for the family to do, they should be told that they are welcome to stay as long as they wish, but that staying longer is not necessary.

Certain situations and presentations give rise to heightened concern for the safety and well being of survivors or staff. These situations may call for immediate intervention or efforts to arrange increased support.

• Spouses of patients who have died after many years of marriage are at high risk for death shortly after the death of the patient.

• Suicide threats should be taken very seriously, as recent bereavement is an important risk factor for successful suicide. ^[31]

• Psychiatric symptoms such as hallucinations, other psychotic manifestations, or even prolonged and unremitting denial, hysteria, and anger are indications for psychiatric consultation.

• Requests for sedating medication are common, but such medications rarely are needed and may delay the grief process. Verbal support, reassurance, and home support usually are sufficient to calm a distraught family member.

• Extreme survivor guilt may lead to a suicide attempt by a survivor, particularly if the victim died by suicide. These issues should be discussed openly. Feelings of guilt and responsibility can be alleviated greatly by open discussion and reassurance.

• Gang threats often are carried out and are an absolute indication for police involvement.

• Overburdened family members can become significantly impaired if they do not have the opportunity to grieve. The death of a parent often leaves the surviving parent so overburdened with caring for the children that grieving and healing may be postponed indefinitely. Every effort should be made to identify sources of practical support from other family members or through community resources.

• Survivor contribution to the death is a particularly serious situation. Suicidal ideation is not uncommon in cases where the survivor was unintentionally responsible for the death.

When there are special concerns, possible interventions should include psychiatric consultation, short-term hospitalization, placing a helper with the family, arranging follow-up counseling, and calling out-of-town relatives to assist. ^[32]

Family members have been invited to attend the resuscitation effort with increasing frequency in some centers, particularly in pediatric cases. ^{[25, 26, 27, 28]} The presence of family members in a tense and often chaotic resuscitation room is controversial, with strong arguments both in favor of and opposing the practice. ^{[33, 34]}

In a report from Foote Hospital, a private hospital in Michigan, family and staff were questioned after a family member viewed the resuscitation. Ninety-four percent of responding family members said they would participate again. Seventy-six percent thought that their own adjustment to the death was facilitated by witnessing the resuscitation. Sixty-four percent felt their presence had been beneficial to the dying family member. All respondents agreed that the staff had done everything possible to save their family member. A small prospective study from the United Kingdom showed that viewing a resuscitation led to lower scores for posttraumatic stress disorder and prolonged grief on standardized psychological questionnaires. ^{[35, 36]} More recent studies continue to report conflicting results for the impact of family presence on out-of-hospital cardiac arrests and those cared for in the ED. ^{[37, 38, 39, 40]}

Hospital surveys show physicians are generally more likely than nurses to oppose family presence, with less experienced physicians objecting more. ^{[33, 34]} Common reasons cited for opposing the practice include increased stress during an already demanding situation, risk of family interference, and medicolegal concerns. Proponents of the practice cite several arguments in rebuttal of the opposition. Stress during resuscitations is a very subjective and personal experience, and family presence can have a variable impact on performance. In the Foote Hospital research, 30% of staff members who were surveyed reported feeling hampered in their efforts due to anxiety from being observed. Physical interference by family members has rarely been reported, and almost always occurs in institutions with no formal plan for allowing family presence. ^[41]

Family members who are present during resuscitations may be less likely to pursue legal action when they see that great efforts were taken and everything was done to help save their family member. Many legal disputes arise from poor communication, which can be eliminated by having family members involved. The concern that family members would demand continued efforts has not been substantiated in centers with regular family presence.

The presence of family members during resuscitation remains controversial. ^{[25, 26, 27, 28, 42]} The 2012 American College of Emergency Physicians policy on providing care to children in the ED states “the option of family member presence should be encouraged for all aspects of ED care.” The 2005 American Heart Association guidelines support the option for family members to be present. Formal programs can help create a more structured setting for an otherwise potentially chaotic situation. Hospitals wishing to create a program should designate a staff member to help assess a family's suitability and wishes, help prepare the family members for what they will see, explain the process when they are in the room, and provide support before, during, and after the experience.

Holding the baby

Parents need sufficient time to hold and rock their baby for the last time.

Sudden infant death syndrome

SIDS is a diagnosis made after autopsy and, therefore, cannot be made in the ED.

Religious rites

Inquiry should be made regarding religious preferences and any religious ceremony the family would like performed.

Nursing

Nursing mothers should receive information on delactation. The mother's obstetrician should be called. The local La Leche league or SIDS foundation is usually an excellent resource.

Siblings

Parents often do not know how to inform children of a sibling's death. Initially, parents may want to keep the news from surviving siblings in an attempt to protect them, but this rarely is helpful; parents should be encouraged to take an open and honest approach. Parents should be aware that siblings often feel rejected or may blame themselves for another child's death. Several books have been written to help parents and siblings through the grieving process that follows the death of a child.

Mementos

Parents may be offered the opportunity to gather mementos, such as a lock of hair, a photograph, or a footprint.

Only a decade ago, the practice of using newly dead bodies for training in emergency medicine was thought to be common at most emergency medicine training programs, often without consent. The practice has met with increasing controversy over the last several years as the importance of issues such as disclosure and informed consent at the time of death is better recognized. Approaching a grieving family to obtain consent to perform procedures on a newly dead patient is difficult; debate continues on the necessity or practicality of such a practice.

Training in emergency medicine requires learning a variety of procedural skills, many of which are invasive. Some procedures, such as cricothyrotomy and venous cutdown, are essential skills that are rarely encountered during clinical training. Proponents argue newly dead bodies provide the most realistic opportunity for learning invasive procedures and are preferable to training on living patients with no risk of harm or financial cost. Some experts argue that consent should be implied unless specific instructions not to perform procedures exist. They argue that obtaining consent is not feasible and may add to the distress of grieving family members. Others argue that alternative training models are available and that such procedures should not be performed on any patient without consent from the patient before death or from the family at the time of death.

Some research into the topic has focused on patient and family attitudes toward using the newly dead. Many adults find the practice to be acceptable and would be willing to have procedures performed on themselves or relatives shortly after death. Supporters of the practice felt like they would be able to contribute to education after they died. However, most feel that some type of consent should be obtained prior to any procedures. Some options have been suggested for providing consent such as provisions in a living will or carrying a card similar to an organ donor card. Other ethical issues also arise from cultural differences in treating the bodies of the newly dead, as certain cultures believe the body is sacred, including after death.

Currently, no universal guidelines or official policies exist on the practice. Current practice is variable, with a few institutions having a formal policy and the rest leaving it up to the judgment of the clinician.

What happens in the weeks and months to follow? Many studies suggest increased morbidity and mortality among survivors for at least a year after the death of a loved one. ^[43]

Morbidity may manifest as increased somatic symptoms, increased alcohol and drug use, overt depression, work and social dysfunction, and increased hospitalizations. All of these problems are improved by social support and are less common when a healthy grief process occurs.

Several EDs have developed specific grief support programs that have improved staff attitudes and decreased the sense of isolation experienced by survivors. Easy-to-implement efforts that have been particularly well received include sending a sympathy card from the ED team, sending a letter explaining autopsy findings, and making a follow-up call several weeks later to see how they are doing.