Sudden Traumatic Death in Children: Title and subTitle Break“We Did Everything, but Your Child Didn't Survive”

Lindy (not her real name) was a healthy 18-month-old toddler who was struck by a car after chasing a dog out onto the street. She had no medical problems and an unremarkable medical history notable only for in vitro fertilization as her means of conception. When paramedics arrived at the scene, she was apneic with evidence of a severe closed-head injury and bleeding from her ear. She was intubated and transported to a level I trauma center. On arrival, she had a blood pressure of 50/30 mm Hg and a Glasgow Coma Scale Score of 3. In addition to severe head trauma, abdominal ultrasound showed evidence of intraperitoneal hemorrhage. She was taken to the operating room, where a liver laceration was repaired and an intracranial pressure monitor was placed. A head computed tomographic scan revealed diffuse bilateral edema, a skull fracture, and diffuse subarachnoid hemorrhage.

Lindy was jointly treated by pediatricians, neurosurgeons, and trauma surgeons in the intensive care unit (ICU). Overnight her intracranial pressure remained elevated at 50 to 60 mm Hg, despite maximal medical management, including mannitol and inotropic agents to maintain her cerebral perfusion pressure. She required transfusions of packed red blood cells as well as coagulation factors.

Lindy's parents were informed of her poor neurological prognosis, and during the night her parents made the decision that they would like to donate her organs if she did not survive. The next day, the neurosurgical and pediatric attending physicians established the diagnosis of brain death. Lindy was maintained on inotropic agents and mechanical ventilation until the following day when, in keeping with the family's wishes, her organs were procured and transplanted into multiple recipients.

Dr W, the director of pediatrics at the trauma service, and Ms B, a social worker assigned to patients and families in the emergency department, were interviewed by a Perspectives editor in May 2005. They, along with the team of practitioners who cared for Lindy and her family during her 36-hour hospital stay, faced a series of challenges that are explored in the discussion below.

MS B: The charge nurse told me this trauma victim was an 18-month-old girl who had been hit by a car. She was being taken care of by her grandfather . . . while her parents worked. He was in a state of shock, having heart palpitations and couldn't get in the ambulance with her so she was by herself and I was eager to find the parents. After I had been searching for about 15 minutes the father arrived. Then I was juggling the parents and trying to get the grandparents in, knowing that she was likely not going to make it. The parents were told that she was in critical condition and the next 24 hours would be significant.After sitting with his daughter for 7 hours in the ICU, the father came out of the ICU and said he wanted to donate her organs. . . . He explained, “I can only hope that her organs bring as much life to another child as they brought to her.”

DR W: I think that given the tragedy, everything went well in this case. We were able to keep the parents informed and let things happen in a way that felt very respectful and maybe the best possible way, given the fact that things never go the way that you want them to. It's like you're trying to have a funeral organized and go on time, in the context of a busy ICU. That's very difficult to have come out well.

Unintentional injuries, often the result of motor vehicle collisions, are the leading cause of death for children and adolescents older than 1 year.¹ As many as 70% of childhood deaths occur inside hospitals, typically in emergency departments or ICUs.¹

By virtue of their mandate to provide a calm and proficient medical response to such events on a regular basis, emergency care providers must necessarily adopt an approach characterized as the “routinization of disaster.”² In this sense, Lindy's injuries catalyzed a medical episode that is relatively common in the emergency setting. It simultaneously initiated a human episode for Lindy's family that was utterly uncommon to them and soon became catastrophic. When parents of children with life-threatening conditions are interviewed about what was important and memorable to them in their child's care, they often focus on kindness, genuineness, and empathy by health care professionals and the critical importance of clear communication, accessibility, and continuity of care.^{3 - 7} In their accounts, parents commonly describe how the relational context of their child's treatment shaped their experience and assessment of the care received.^{7 - 8}

The difference in perspective between the clinician's effort to retain necessary calm and the parents' need for clear acknowledgment of their catastrophe can lead to poor communication, with the clinician seeming detached and insensitive. Lindy's case demonstrates an effective approach to avoiding such a pitfall. Critical elements of the team's response included established guidelines for communication and care coordination, empathic honesty in all discussions, clear delineation of roles and responsibilities within the clinical team for both medical and psychosocial or spiritual issues, and ongoing and final staff debriefing.

Sudden traumatic death in children often occurs as the result of massive injuries sustained at the time of the impact, with children expiring either in the out-of-hospital setting or shortly after arrival in the emergency department. Children who survive long enough to be admitted to the ICU typically have stable vital functions and generally have a good prognosis for recovery from injuries sustained to vital organs. When death occurs in this setting, it is often the result of traumatic injury to the brain. Lindy's case is typical of this clinical course. Clinicians who care for children with traumatic injury therefore need to be knowledgeable about the possible clinical trajectories of head trauma in children, which range from remarkable recoveries at one end of the spectrum to brain death and considerations of organ donation at the other.

DR W: I always like to have hope with children because their brains are able to recover much better than adults’. However, this injury was so severe and the pressure was so high in the brain that I was already worried that the outcome would be that the baby would not survive. . . . So, I went in planning to go through everything, making sure that they understood where we stood, medically. I also said that the prognosis was very poor at that time and the child would likely not survive. . . . I think that's what a lot of this is about: how to give information to the parents and when to give it.

When a child is admitted with severe head trauma, parents want to know not only the clinical status of their child, but also what is likely to happen in the near future. Unfortunately, many clinicians do not have a clear understanding of the definitions of brain death, the principles that bear on end-of-life decision making, or the possibilities for organ donation.^{9 - 10} In addition, overly optimistic or pessimistic prognostication provided in the early hours following severe head trauma can disrupt the trust and confidence of the parents in their clinicians; thus, it is essential that clinicians understand the various clinical trajectories that are possible and appreciate how these trajectories affect the options to be considered and the decisions that must be made.

Several different clinical trajectories can be identified following severe head trauma. Clinical algorithms have been published to guide the management of these patients.^{11 - 12} Clinicians should recognize that the prognosis for traumatic injury is markedly better than for ischemic or hypoxic injury and that children who have prolonged coma from traumatic injury may still have a good long-term outcome.^{13 - 14}

Lindy's case illustrates the other end of the spectrum, in which resuscitative efforts failed to control the progression of cerebral edema and the evolution to brain death. Between these 2 ends of the spectrum are patients who have severe brain injury but who do not progress to brain death. In situations like these, in which the child sustains profound neurological injury but does not become brain dead, parents and clinicians must work together to decide whether to continue with life support or to withdraw mechanical ventilation and allow the child to die.¹⁵ Many factors influence parental end-of-life decision making, including the nature and certainty of the neurological prognosis, the child's quality of life and perceived degree of pain and suffering, understanding of what the child would have wanted, and religious and cultural considerations.^{3 ,16 - 18 (pp509-552)}

The severity of the neurological injury that must be present before withdrawal of mechanical ventilation may be considered is not specifically defined by ethical precepts or in the law; these decisions are generally made by parents in collaboration with their physicians and other advisors.^{19 - 20} Within a fairly broad range of severe neurological injury, both the choice to withdraw life-sustaining interventions, such as mechanical ventilation, and the choice to continue are ethically and legally permissible, and clinicians must be skilled at informing, supporting, and counseling families to make end-of-life choices that are right for them.

DR W: [I told them] I was concerned that their child was what we call “brain dead” and that we were going to do a brain death test. I discussed what that meant because people often don't know the difference between coma and brain death, and the implications of each . . . once you are declared brain dead, there is no more medical choice about what to do. (The person) is considered dead, and the choice becomes organ donation or not.

Brain death is defined as the irreversible cessation of all functions of the entire brain, including the brainstem.^{21 - 22} In most cases, the diagnosis can be made at the bedside, without specialized procedures ( Article ). Patients diagnosed as being brain dead are legally dead. The death certificate should be filled out at the time the diagnosis is established. Although brain-dead patients are legally dead, they are often not perceived as such by families or even clinicians. Particularly when the injuries are primarily intracranial, the patients may look remarkably normal, like someone who is just sleeping (albeit, requiring a ventilator to breathe). Indeed, brain-dead patients have almost all of the features we commonly associate with life except for the capacity for consciousness.²³ Clinicians and families alike may therefore struggle with cognitive dissonance, on the one hand understanding the ethical and legal ramifications of the diagnosis of brain death while emotionally relating to the patient as a living being.²⁴

General Considerations

Clinical Examination Criteria

Absence of Brainstem Function

Apnea Test

Age-Specific Requirements

Confirmatory Diagnostic Tests

Based on Wijdicks²¹ and Report of Special Task Force.²²

Both realities must be acknowledged, and those who continue to experience the patient as alive should be provided with information and support. They should understand that brain death is a highly reliable diagnosis and that no one correctly diagnosed with brain death has ever regained consciousness.²⁵ Furthermore, once patients are diagnosed as brain dead clinicians should not have discussions with the family about whether to withdraw mechanical ventilation because the patient has already been declared dead and continuation of mechanical ventilation is not an option. Families may become confused, mistrustful, and angry if they are encouraged to think about the decision to withdraw mechanical ventilation only to learn that there is no decision to be made.

DR W: We had them be with their child, and we did the brain death test, which was positive. Then they decided how they wanted to say good-bye. We gave them as much time as they needed. It's important to give parents access to the child. Because of the intensive care unit and everything about it, there's a loss of control and a lack of feeling close. Many parents would like to lie in bed with their child, and that's fine. Anything that can make parents, for at least a time, able to cry, to touch and talk to the child, to lie with and hold the child, I think that's very important. We try to set things up so that's possible. We often will cut a lock of hair from the child and take handprints and footprints of their child. Many parents have found that to be a very positive memory. These parents did want to have that done.

Lindy's parents chose to leave the hospital for a few hours after the diagnosis of brain death was made in order to prepare for a final good-bye with their child, a request made by many parents in these situations. Families should be accommodated by providing ample time and privacy so that they can have this additional opportunity to grieve in the presence of the body. Families report they value this experience because it honors the integrity of the parent-child relationship.^{5 - 7 ,26 - 27} Such opportunities may also create tender memories that begin to support the grieving process.^{6 - 7}

MS B: One of our primary roles as social workers is . . . to find the next of kin, the family, and [to function as] the liaison between the family and the physicians, the family and the patient. . . . I met the ambulance outside the hospital. I tried to get whatever information I could regarding the patient, the age, what exactly was going on, and what happened, so I could relate it to the family. This little girl was being taken care of by her grandfather [when the accident happened]. I was concerned about the grandfather's health. . . . I asked if I could see him. The mother gave me his phone number, and he ended up coming to the hospital when the little girl was in the ICU.

DR W: I made sure that the neurosurgeon attending and I had talked, as well as the nurse that was taking care of the child at the bedside, and the head nurse in the ICU. I made sure that we were all on the same page. . . . I was the one who talked to the parents throughout the night. The social workers get very involved with the parents. . . . They try as best as they can to interface with the doctors to make sure that as much information as possible is given to the family.

A study evaluating the perceptions of the quality of care of 56 parents whose children had died in pediatric ICUs after the withdrawal of life support described confusing communication and lack of care coordination as major sources of stress.⁷ Other studies of families' perceptions during their child's terminal illness describe similar concerns.^{4 - 6 ,28} The physician in this case addressed the challenge from the very beginning by following guidelines the hospital had established for communication with a broad range of professional staff. The team also implemented a plan for identification and assessment of key players in the family's social network and community who might be at risk for further adverse occurrences or who might be able to help.^{29 ,31} In this family, the grandfather was at high risk for psychological and physical events because of his likely struggle with the question of whether the death was realistically preventable. In other situations, young children in the family as well as parents and other adult family members should be assessed for immediate information and support needs. Such advance preparation provides invaluable reminders of important details that may be forgotten at the height of an emergency.³¹

Studies have also reported that while most families want honest and complete information, they have a variety of different communication preferences depending on culture and religious background, the child's prognosis, individual and family coping style, and previous experience with loss.^{3 ,5} For example some parents want more involvement with medical staff in all discussions of the child's condition, whereas others prefer a person familiar to them to distill the information for them.⁷ In this case, a social worker was assigned to provide the team with early assessment of the family, their information needs, and preferred communication style. The availability of a skilled professional who is allotted the time to make these early determinations of the family's needs has been suggested as a way to provide communication tailored to specific family preferences in emergency services.^{29 ,31} Families must quickly process a great deal of information and emotion in order to make good decisions. Due to their confusion and being overwhelmed by the catastrophic events, their responses may be challenging to medical and nursing staff who need to concentrate on complex care and treatment decisions. Having a skilled professional available to the family may help to ensure that their concerns and wishes are heard and understood within the clinical team and that they have assistance with the broad range of problems and decision making that quickly emerge around a child's life-threatening condition.

MS B: You have to be able to pick up from the family what they can handle. . . . You just have to be very supportive of what their needs are. . . . After the test for brain death, the doctor pulled me aside and said he was ready to tell the family, . . . and he wanted me to go with him. The grandparents and parents were there as well as the mother's brother and her best friend. It was devastating to them, the first time they understood that they would never have their little girl back. The mother got extremely anxious and just paced the halls, and I paced them with her. We must have walked back and forth 25 times. Then we just sat there and cried. . . . I suggested that she think about bringing in a favorite doll, stuffed animal, or blanket for her daughter.

DR W: In those [situations] I try to have a social worker with me and others [that seem to provide] stable family support. I consider [involving] a [chaplain or staff psychologist]. If the social worker hears what is said directly, she can be more helpful in clarifying and reality testing afterward.

Experienced clinicians often quickly recognize when a situation is not likely to have a good outcome. Communicating with families through tragic times is not, however, simply a matter of delivering information about everything that is known or suspected. Rather, it is better understood as an unfolding series of interchanges between a team of clinicians and a traumatized family. Each of these encounters is highly contextual, requiring attunement on the part of clinicians to the shifting capacity of family members to hear and understand the information being conveyed, as well as to absorb its emotional impact.³² Just as medications need to be dispensed with consideration for choice, dosage, and timing, so, too, should clinical information be communicated with regard to the choice of what to communicate, the degree of detail that is preferred by the family, and at a time that is most appropriate to the family's needs.^{7 ,32 - 35} Good communication and relational capacities are particularly important when, as in Lindy's case, the series of conversations must quickly move from discussions about the medical facts, to the possibility, probability, and then reality of death and the discussion about the possibility of organ donation. Although the principle of truth telling is vital in this communication,^{6 ,33 - 34 ,36 - 39} equally important is appreciating the delicate balance of an evolving conversation in which families “hope for the best, and prepare for the worst” as they gradually assimilate catastrophic news.⁴⁰ The Table suggests guidelines for responding to families across the continuum of events following a life-threatening injury.

Such sensitive communication skills are practiced by physicians and other staff through ongoing refinement of written guidelines and debriefing sessions. This evolving communication with families is also well served by a clear delineation of roles and responsibilities within the clinical team. In this case, the social worker was responsible for supporting the parents emotionally after the meeting, helping them come to terms with the reality of the situation and assisting with processing their understanding and reaction to this news.

MS B: The father came out of the ICU and said that he wanted to donate her organs. We hadn't yet talked about the fact that she was going to die. But, he said that if she wasn't going to make it, then he wanted her organs to be donated.

DR W: This is the second most difficult aspect of these cases, the organ donation, especially because of the timing of it. You are already going in to tell the parents that their child is dying or already dead, and with that shocking news you are adding on this incredibly difficult question about if they want to donate their child's organs. It is such horrible timing that these 2 things come together. . . . One of the good things about the system is that organ donation counseling and information are kept very separate from the medical staff. So, I bring it up and then ask if it is okay for the organ donation people to talk to the parents.

Brain death provides the possibility for organ donation, therefore the diagnosis of brain death and organ transplantation are closely linked. This creates a danger, unfortunately, that parents may erroneously believe that the reason their child has been diagnosed as brain dead is primarily to obtain the organs. For this reason, clinicians are encouraged, whenever possible, to address these issues sequentially in separate family meetings. Ideally, the diagnosis of brain death should be presented and explained first. This meeting should close with an understanding that the family will be provided time to absorb this tragic news, and that the clinical team will return in a short while to discuss next steps. Then, in a subsequent conversation, the options for organ donation can be explored.

US federal regulations require the regional Organ Procurement Organization to be contacted for all deaths and impending deaths so that their representatives can become involved in a timely manner.⁴¹ Studies have shown that families are most inclined to consent to the donation of organs when they experience continuity of care between hospital and organ donation staff, when the organ donation staff are involved early and make the donation request, and when ample time is available for this discussion.^{42 - 43} Although there is great variability among families in their response and decision regarding organ donation, most families are willing to consider donation and value the opportunity to discuss donation or to know that their child could not be a candidate for organ donation because of the medical circumstances.^{16 ,26 ,44 - 45}

Even though the time between the patient's arrival and the diagnosis of brain death may be relatively brief, some families develop a sense of confidence, partnership, and trust in the clinicians who have provided care. These clinicians therefore play a key role in helping the family to transfer existing confidence and trust to the organ donation representative.⁴² This can be done, for example, by introducing the family to the organ donation representative as a colleague with special expertise in the various options that need to be considered.

Sometimes, as in Lindy's case, parents may spontaneously raise the possibility of organ donation early, before the diagnosis of brain death has been considered or confirmed. Clinicians must be prepared for these questions because misinformation or a clumsy response can be difficult to correct later. When this occurs, parents' specific concerns and questions should be clarified and addressed in a straightforward fashion. They can then be told that organ donation may indeed be an option but that at the present time, the clinical team is focused on optimizing the potential for neurological recovery. This conversation, handled competently, can lay the groundwork for subsequent conversation about organ donation.⁴³ Suggestions for communicating with families as severe head injury evolves into brain death are listed in Article .

Assessment

Ongoing Support and Information Clarification

Preparation of Family for Worsening Prognosis

Follow-up Contact With Family

Validate the Ubiquitous Profound Emotional Responses of Staff and Foster Sharing and Acceptance

MS B: When I was told that it was an 18-month-old little girl who was hit by a car, I immediately went back to my office and sat down. I had to decide if I could manage this case, given the fact that I had a child of the same age. After the doctor told the family how critical their daughter's condition was, the mother got extremely anxious and I followed her. . . . That was when she asked me if I had children. When do you share and when do you not share? My training taught me not to share. She was grieving, though, and so vulnerable. I thought she needed to know that she could trust me. So I told her that I had a little boy that was close in age. She looked at me and just hugged me and said that I knew what she was going through. We just sat there and cried. I still wonder, to this day, if that was the right thing to do, to tell her that I had a child. I think it was.

When family members are facing the sudden traumatic loss of a child, they characteristically experience profound anxiety and a shattered sense of trust and meaning in the world.^{30 ,46 - 48} When this type of loss is borne in a medical setting, families may rely heavily on health care professionals, at times describing them like “family or friends.”^{3 - 4} Crisis situations, such as described in this case, can also promote rapid connection that is supportive to families.^{31 ,48 - 49} In this context an honest response to direct questions may help to build and maintain a sense of commonality and trust. The efficacy of an approach of empathic honesty is supported by recent studies of families' perceptions of their experiences.⁸ They report feeling upset by “uncaring” or “detached” communication and the lack of emotional expression on the part of staff.^{4 ,26 ,28 ,32 ,50} Conversely they express appreciation of “acts of kindness,”⁵¹ demonstrations of affection and caring for their child,⁵² and expression of emotion about tragic situations.^{7 ,26 ,32 ,34 ,50 - 51 ,53}

Helping families through these tragic times places profound ethical and emotional demands on clinicians, during which they are challenged to respond with authenticity, compassion, and kindness. Professional education, which may discourage personal disclosure and sharing of feelings, can create uncertainty for clinicians about personal and professional boundaries and what is “the right thing to do” in such close personal encounters.^{54 - 57} Indeed, although these issues require continued study, one author suggests that “clinicians need not fear displaying their empathy and own emotions, for this is the very substance that can convey one's humanity.”^{7 (p654)}

DR W: I find that it is personally helpful to have mini debriefings with myself and other people involved in the case. . . . I found the nurse who had cared for the child through most of the time. We just talked briefly by the ice machine in the ICU and were able to express sadness and some really positive feelings about how everything had been handled. . . . We were able to keep the parents informed and let things happen in a way that felt very respectful . . . maybe the best possible way, given the fact that things never go the way that you want them to.

MS B: After the parents left, we were all “raw” and on the edge of tears, having worked for 36 hours. . . . So I asked everyone to come into the room (there were about 12 of us) and said, “She has given us so much life and we have learned so much from this family about death and about who we are as people.” I think what's really important, more than the work, are the people in our lives and how we affect them. . . . I told them, “It is okay for us to cry and to be upset.” So we all just sat at her bedside and cried for (a few) minutes. . . . That was one little debriefing.

DR W: It was an incredibly sad case. It had me in tears a lot of the time. It was very important to debrief. We usually have one of our social workers do a (formal) debriefing session where we can discuss our feelings about the case. . . . We invite anyone that was involved. I think the meetings are better if a medical person doesn't run it. The focus should be on how we are feeling and the natural potential for feelings to come up in the next certain time period, the importance of connecting with loved ones, and others. . . . Things like that are important to discuss. . . . The medical professional is so quick to escape to the medical details of the case.

Confronting the death of a child can create profound feelings of uncertainty, powerlessness, and hopelessness in clinical staff. Debriefings offer an opportunity to counter demoralization, provide validation of effective work, and identify areas for improvement. They are sometimes neglected in cases for which the time from admission until death is brief. Informal and formal debriefings can help promote a sense of self-efficacy, which has been shown to have a powerful mediational role in maintaining human well-being and functioning in the face of such traumatic experiences.⁵⁸ In this context debriefings aim to restore a sense of meaning and purpose in people's lives by affirming actions they took that were helpful, worthwhile, and contributed positively to the well-being of the child, the family, and the team.

Parents who confront the sudden death of a child are at risk for a broad range of complicated grief experiences.^{18 (pp553-579),31 ,46 ,53 ,59 - 63} Although parents demonstrate a range of emotional responses at the time of the death, from appearing controlled and stoic to being highly emotional and inconsolable, it is not certain how these initial reactions relate to later adaptation.^{29 ,61} Even parents who seem to be coping well at the time of the death, as did the parents in this case, are likely to need support to deal with such a devastating event. Only recently have studies explored parents' bereavement experiences and support needs following a child's sudden death. Families report inconsistent bereavement follow-up services and difficulty obtaining help in the community, in part because they had not been previously connected with health care facilities or personnel.^{3 - 4 ,53 ,64} Even though parental contact with the hospital may have been brief, meaningful and deep family relationships with staff may have been established that can be experienced as an additional loss by acutely bereaved parents. Various approaches to bereavement follow-up care have been proposed and are currently under evaluation. Interventions have included providing packets of specific referral information, a contact person,³¹ follow-up cards, and follow-up telephone calls by a hospital staff member; team-family conferences conducted 6 weeks after the death,^{64 - 65} and coordinating hospital-sponsored memorial services for families of children who have died and hospital staff.⁵¹ Prospective and longitudinal research on the recovery process of traumatically bereaved parents, although limited at present, has the potential to foster early positive bereavement adaptation and to improve our capacity to prevent more symptomatic outcomes in parent and sibling survivors.^{18 (pp553-579),30}

Sudden traumatic death of a child presents an array of diverse challenges to clinicians, in providing care for the child and in communicating with the family, as well as in self-care and support of the clinical team. Optimal practice requires a calm and proficient approach to the medical demands of the clinical case and interdisciplinary teamwork, while at the same time, responding well to the relational demands of an unfolding human tragedy. Although these events are among the most stressful situations that clinicians will ever encounter, as evidenced in this case, they also provide unique opportunities for professional satisfaction and personal growth.