VANESSA MADRIGAL and WYNNE MORRISON

Although mortality rates for children in developed countries have been decreasing over the past few decades, over 50,000 children still die yearly in the United States, with most of these deaths occurring in the hospital (1–4). From age 1 until young adulthood, unintentional injury is the leading cause of death. Compared to adults with life-threatening multisystem trauma, trauma in children is more likely to include a component of neurologic injury, which is a leading contributor to both morbidity and mortality in pediatric intensive care units (ICUs) (5–7).

In addition to patients with traumatic brain injury, clinicians in multidisciplinary pediatric ICUs (PICUs) may care for children with other life-threatening neurologic problems such as central nervous system infections, intractable seizures, brain tumors, hypoxic-ischemic brain injury, or congenital problems such as hydrocephalus or progressive neuromuscular weakness from many causes. In one large, multicenter study, 12% of children who died in PICUs were initially admitted for neurologic diagnoses (8). Children hospitalized with central nervous system disorders are more likely to be in the ICU than other children, and also are more likely to die, with as many as 46% of children who die in ICUs having a neurologic diagnosis as one component of their illness (9). To care for these children and their families, it is necessary to become comfortable providing effective, compassionate end of life care when lifesaving or life-prolonging therapies are either no longer possible or no longer in the child’s best interests. Skillful care at the end of life requires an ability to help a family and health care team navigate the ethical and emotional concerns that may arise when a child is dying. It also requires a focus on pain and symptom management with special attention to how pharmacologic therapies differ when the goals of care shift to providing comfort rather than extending life. All pediatric intensivists and neurointensivists will care for dying children, and knowing how to guide children and families through this stage of life is an important complement to knowing how to save a life when doing so is possible.

■ HOW DEATHS OCCUR IN THE PICU

There are many different ways that children can die in an ICU. Some will be declared dead by neurologic criteria and others by traditional cardiopulmonary criteria. Some will die despite continued resuscitative efforts and escalation of therapies, and for others the family and medical team will decide to discontinue or not initiate potentially life-sustaining interventions such as mechanical ventilation.

Several single center studies in the United States have suggested that as many as one-third to half of deaths in PICUs are preceded by decisions to limit or discontinue life-sustaining interventions (10–14). The frequency with which support is withdrawn varies greatly from country to country, and individual practitioners likely have varying thresholds for when they would consider withdrawal of therapies (15). Withdrawal of technological support may be more frequent in children with prolonged ICU stays (16). A recent study using a large, multi-institutional database in the United States suggested that it is becoming more common for children to die with some limitations on medical therapies in place. Although there was a wide variability between institutions, out of 1,263 deaths, 23% of children were declared dead by neurologic criteria, 16% had do not attempt resuscitation (DNAR) orders, 49% had medical therapies limited or withdrawn (and presumably also had DNAR orders by the time of death), and only 12% died despite ongoing medical interventions (8).

Declaration of Death by Neurologic Criteria

Children with brain injuries or other processes that lead to severely elevated intracranial pressure will often, over the course of hours or days, suffer an irreversible loss of all function of the brain, a state described as total brain failure or brain death (17). In recent years, the term death diagnosed by neurologic criteria has been suggested as being preferable to brain death in order to emphasize that it is the criteria used for diagnosing death that differ (either cardiopulmonary or neurologic), not the fact that the patient is dead. Brain death is discussed in Chapter 27.

The declaration of death by neurologic criteria can be confusing for many families, as they are told that their child is dead while the body is still warm, the heart is still beating, and the chest moving in respiration due to the mechanical and pharmacologic cardiopulmonary support in place in the ICU. Careful attention and patience is necessary to help families understand that the patient is truly dead. Many clinicians misspeak and make statements like “he will die” when the ventilator is discontinued, when in fact death has already occurred. Clarity in language used can help avoid confusion.

Although the death of a child is almost always a tragedy, being able to definitively determine when brain injury is complete and irreversible can be helpful to both the family and medical team. Once death has been declared, there is no need for the family to struggle with difficult decisions about whether to discontinue therapies like mechanical ventilation. The team is able to tell the family that the outcome is certain and the next steps are clear. Once a patient has been declared dead, a family should not be asked whether they want to discontinue a ventilator, only the timing of stopping needs to be discussed.

Another question that needs to be resolved once death has been declared is whether the family wishes to take the opportunity to donate the child’s organs before the mechanical supports are discontinued. It is standard practice to separate the discussion of organ donation from the conversation in which the family is told that their child is dead, in order to give them time to process the news before being asked about donation (18). It is also important for organ donation to be discussed in conjunction with a representative from an organ procurement organization (OPO), who is the expert in the processes involved in donation. Effective collaboration with the OPO can be facilitated by an early referral of a severely brain injured and ventilator dependent patient for evaluation of eligibility as an organ donor. Although the family should not be approached about donation if death has not yet been declared, the OPO representative can review the case and talk with the team about whether donation would even be possible. Plans for when and how to approach the family can also be made.

Failed Resuscitation

Many children die in the ICU despite ongoing support with the full array of available life-sustaining measures and resuscitative attempts. Children with neurologic injury or diseases may die because of failure of other organ systems that are compromised by the same process that has affected the brain. In addition, severe neurologic dysfunction can also lead to cardiopulmonary failure, with arrhythmias, hemodynamic instability, or acute respiratory distress syndrome as reported sequelae.

When a child has died despite ongoing resuscitation, attention should turn to support of the family and the medical team. Many centers have begun to allow families to be present while cardiopulmonary resuscitative attempts are underway (19). Allowing a family to be present can reassure them that everything possible was done to try to save their child, and can sometimes help a family feel that they were able to say goodbye before the moment of death. Although staff may fear that family presence could interfere with their ability to provide appropriate care, there are reports in the literature that suggest that this is rarely a problem (20,21). It is important to have a staff member available to explain what is going on to family members and provide support, and no family member should be required to remain present for a resuscitation if it becomes overwhelming.

Withdrawal of Life-Sustaining Therapies

In many cases, a family and medical team will make a joint decision that the burdens of continuing medical therapies outweigh the benefits for a particular child. This decision is often made in cases where the medical team feels that death is highly likely to occur even if ongoing aggressive measures continue. Sometimes survival may be possible, but the quality of life of the surviving child is expected to be so poor that the decision is made not to prolong suffering. In the minds of many, neurologic status and cognitive function are key determinants of quality of life, and therefore baseline cognitive function and expected deteriorations in neurologic status from baseline may both be important factors in helping a family and team decide whether ongoing medical therapies are overly burdensome. For other families, however, there may be inherent value in supporting life no matter how impaired the child is or is expected to be. Such decisions are therefore inherently value-laden and an individual patient’s and family’s opinions should be considered.

Ethically, there is little difference between withholding and withdrawing a medical treatment, and having begun a treatment does not impose an obligation to continue it if circumstances change and the intervention no longer offers a long-term benefit for the child (22–24). For many families, however, there is a tremendous emotional difference between deciding not to start what is felt to be a nonbeneficial therapy and discontinuing a therapy that is already in place. Some families may decide that they are comfortable limiting the further escalation of mechanical or pharmacologic supports, but want to continue support which is currently in place until the trajectory of a child’s illness becomes absolutely clear. Flexibility on the part of the team is necessary to find a solution that is both emotionally acceptable to the family and medically appropriate for the child.

DNAR Orders

DNAR orders are orders that specify therapies that will not be applied if a patient’s status deteriorates (25). A wide range of treatments could be limited by such orders, examples being intubation and mechanical ventilation, chest compressions, defibrillation, pharmacologic interventions like vasoactive infusions or cardiac arrest medications, transfusion of blood products or antibiotics. The goal of DNAR orders is to avoid medical treatments that are felt to be unlikely to be beneficial or treatments which may merely prolong dying or a very poor quality of life. “Do not attempt resuscitation” is touted as a preferable phrase to “Do not resuscitate” due to concerns that the latter suggests that resuscitation would always be possible, when it is frequently not so. Some centers have also begun to use the term allow natural death instead of DNAR, as this may be a more acceptable term to patients and families (26,27).

In discussing DNAR orders with patients or families, it is usually best to clarify their overall goals of care, rather than presenting them with a list of possible interventions and proceeding to check off which they would or would not want. Such “goals” could include wanting to have their child suffer as little as possible, wanting to be home if possible, wanting to preserve life as long as possible in the hopes that things improve, or wanting to honor a particular wish expressed by the patient. The patient or family will usually need some guidance as to which therapies or limitations of therapies make sense in light of their overall goals of care (28–30).

It can be important to emphasize that placing a DNAR order is not equivalent to “doing nothing.” Both the team and family should be aware that there are still many things to be done—assuring patient comfort, treating other difficult symptoms, and just being present with a family to assure them that the dying child is being well cared for and that they, as parents, are making loving, appropriate decisions.

Discontinuing Mechanical Ventilation

When a decision has been made to extubate and to discontinue mechanical ventilation for a patient who is expected to die, it is important to ensure that the process facilitates patient comfort rather than increasing suffering (31). Patient comfort may be improved by removing an endotracheal tube that has been a significant cause of distress, but there is also a risk that discontinuing the ventilator leads to dyspnea and respiratory distress. Treating anticipated distress pharmacologically is important, usually both with narcotics and sedative agents. Administering medications or increasing the rate of infusions already in place prior to the extubation can prevent suffering and having to “catch up” with symptoms afterward.

There are two approaches to discontinuing mechanical ventilation, each of which may be appropriate depending on the situation. One method is described in some literature as “terminal extubation,” in which the endotracheal tube is removed and ventilation discontinued without weaning ventilation (22). Another approach, “terminal weaning,” involves gradually decreasing the amount of ventilator support before extubating (32). One advantage of decreasing ventilator support prior to extubating is that it allows the clinician to better assess whether the patient will develop respiratory distress when ventilator support is removed and titrate medications accordingly. If this method is used, it should be possible to decrease the level of support fairly rapidly, over minutes, rather than prolonging “weaning” procedures. For patients who are on advanced modes of ventilation such as high frequency ventilation, switching to a conventional mode of ventilation prior to extubation may help the family be able to hold a child before death. If a patient is already obtunded or heavily sedated, decreasing ventilatory support prior to extubation is probably unnecessary. Regardless of which method is used, a medication plan should be in place for treating distress after extubation with doses readily available prior to removing the endotracheal tube.

It is important for the team and family to understand that discontinuing a ventilator, or any other therapy, does not mean that a child will absolutely die or that death will immediately occur. The family should understand how long the clinician anticipates the child will breathe independently but that there is uncertainty in any such prediction. Most intensivists can remember a handful of cases in their experience where a child did not die after treatments were discontinued. This uncertainty can sometimes be framed in such a way that it helps a family deal with a decision to withdraw—the disease process leads to the child’s death, not the family’s decisions, and therefore, we do not ultimately control the time of death.

The family should also be prepared for what the child may look like after the ventilator is discontinued. Discussion of color changes, work of breathing or irregular breathing, and possible noisy breathing like stridor is important. The clinician should also distinguish between symptoms that cause the patient discomfort and other symptoms, such as irregular or noisy breathing, that cause more distress for the observers than the child. The prior requires medical interventions and the latter reassurance. Checking in frequently after the withdrawal to reassure the family that the child looks comfortable, or to treat discomfort if it is present is essential.

Other measures which can improve the environment for the family include moving to a private room if possible, turning off monitors (or monitoring from outside the room), and helping a family to hold a child both before and after removal of the endotracheal tube. Temporarily relaxing restrictions on the number of family members that can be in the room can be helpful, although it is good practice to first ascertain whether the parents want extended family members present. A family may appreciate having a small child moved from a crib to a larger bed so that the parent can lie in bed holding the child.

Location of Death

Many factors determine the optimal location for medical care at the end of life. How long is the patient expected to survive? How intensive are the interventions required to keep the patient comfortable? At which location in the hospital does the staff know the child and family best? How stable is the home setting and can the child be kept comfortable there? The “best” location may change over time as circumstances or the child’s status changes. Sometimes, the ICU is the best place for a child to be if careful attention and a low patient to nurse ratio is necessary to assure the patient’s comfort. Sometimes it is also advantageous to have a child remain in the ICU if the family has not met staff elsewhere. Other families who are followed long-term on different floors in the hospital may prefer to have their child transferred out to their “primary” team. Many families also want to have their children home at the time of death. Hospice agencies can be invaluable partners in facilitating this desire, as nursing and other support services can then be available in the home. Over time as more of these services become available, more parents of children with complex chronic conditions are choosing to bring their children home to die (33).

Fluids and Nutrition

Although most argue that medically provided nutrition and hydration are medical interventions which can be withdrawn like any other, there are some important differences from other modalities often withheld or withdrawn, such as mechanical ventilation or cardiopulmonary resuscitation (34). For many families, continuing nourishment of their child is of great emotional importance, and discontinuing it may feel like “starvation.” Guidelines have suggested that medically provided nutrition and hydration be withheld only from children with a permanent lack of consciousness, or from children who are actively dying for whom providing it may increase suffering (35). It is also important to consider whether the child is capable of experiencing hunger, and to take steps to ensure that suffering is not thereby increased by withholding medically provided nutrition.

Organ Donation After a Circulatory Determination of Death

Organ donation after a circulatory determination of death (DCDD), also known as donation after cardiac death or nonheart beating organ donation, may be an option for families who have made a decision to discontinue ongoing aggressive support in the care of their child. The process involves the discontinuation of mechanical ventilation and/or other therapies in or near the operating room, with plans in place for a relatively rapid procurement of organs after a brief waiting period following the declaration of death by traditional means (36). There are many controversies surrounding the process, including what constitutes an adequate waiting period and whether the patients can be considered “unresuscitatable” at the time of organ procurement (37). Institutions should have policies in place that guide clinicians in this process. DCDD is touted as a means of increasing the organ supply to prevent deaths on the transplant waiting list, and can also be a help to families who want to be able to find something meaningful in a tragic situation (38). It is important that decisions about withdrawing therapies be made independently from decisions about organ donation, and also important that the team providing the end of life care for the child at the time of ventilator withdrawal be different from the team that will procure organs if the child dies. Standard end of life care, with medications used as needed to relieve suffering, should be provided by clinicians who are accustomed to providing such care, and a location should be identified for ongoing care of the child if death does not occur soon enough after withdrawal to allow the procurement of organs.

■ PAIN AND SYMPTOM MANAGEMENT

An in-depth discussion of pain and symptom management at the end of life is beyond the scope of this chapter, and palliative medicine texts should be consulted for more guidance on this topic (39,40). A few guiding principles and some of the most common medications used are discussed next. Although most patients in the ICU will have reliable intravenous access, it is important to remember that there are many routes of medication administration available other than intravenous—such as oral, sublingual, inhaled, transdermal patches, rectal, nasal, or subcutaneous. Use of other routes should be strongly considered, particularly for patients who may be transitioning to care at home.

Principle of Double Effect

Clinicians at the bedside may be hesitant to use large doses of narcotic or sedative agents at the end of life because of fear that the respiratory depressant side effects of such medications could lead to death. As long as such medications are used in reasonable doses for treating pain, dyspnea, or other symptoms, then it is ethically appropriate to accept that they may cause respiratory depression. This idea is known as the “Principle of Double Effect.” The benefits of the intended effect (relief of suffering) outweigh and justify the harms of the anticipated but unintended effect (respiratory depression) (41). In reality, it is rarely necessary to invoke this principle, as medications which are titrated to effect do not usually cause a significant degree of respiratory depression. It is also important to realize that there is no “ceiling” on the doses of medications that may be needed to treat pain and dyspnea at the end of life. Patients who have become tolerant to narcotics or benzodiazepines may be on doses far higher than the typical starting doses listed in formularies or reference texts, and it is appropriate to continue to escalate doses when needed. Increasing a dose or infusion rate by 20% for mild symptoms or 50% for severe symptoms is perfectly reasonable, with frequent further increases possible for continuing symptoms (42).

Inappropriate Medications at the End of Life

It is inappropriate to give medications at the end of life that have the sole intent of hastening death, without providing symptomatic relief (22,24,43). Examples of such inappropriate medications would be neuromuscular blocking agents or potassium chloride. Neuromuscular blocking agents have the additional disadvantage of making it nearly impossible to assess whether the dying child is in distress and in need of more medication for pain. In rare instances where clearance of neuromuscular blocking agents will be prolonged and delay withdrawal of unwanted therapies, there are some who argue that withdrawal should not be delayed as long as the death of the patient is almost certain given the circumstances and sufficient analgesics and sedatives are administered to guarantee no conscious awareness. Withdrawing under these circumstances is controversial, however, and it is usually better to wait some period of time until reversal of neuromuscular blockade is possible. Most families will understand the need to wait if it is presented as the best way to guarantee that the child is not suffering.

Opioids

Opioid or narcotic agents are usually the primary means of treatment of pain and dyspnea at the end of life, with several options available for use (39). All work via µ-opioid receptors in the central nervous system leading to euphoria and analgesia, and may also cause side effects such as respiratory depression, constipation, nausea, itching, and urinary retention. It is important to anticipate and manage side effects to avoid suffering. Morphine is the longest-used of these agents, and is available in a variety of forms for administration as well as both short-acting and long-acting preparations. Morphine leads to a release of histamine which can sometimes worsen itching, and accumulation can lead to hyperalgesia or myoclonus (42). Switching to another agent can be beneficial if these or other severe side effects occur. Codeine is an agent which works after being metabolized to morphine, but more than 10% of the population are slow metabolizers, decreasing its usefulness. Codeine also tends to cause marked nausea, making it a less useful drug at the end of life. Hydromorphone is a more useful agent as a substitute when side effects of morphine have become difficult to manage. Oxycodone is an oral agent which may be another reasonable alternative for mild to moderate pain. Fentanyl is a short-acting, lipophilic agent available in intravenous and patch formulations. It is often used as an infusion, but tolerance may develop fairly rapidly requiring dose escalation. Meperidine should be avoided because a metabolite, normeperidine, can accumulate and lead to seizures. Methadone is unique among the narcotics in that it also has effects at the N-methyl-D-aspartate (NMDA) receptor. This benefit can sometimes help control pain when patients have become tolerant to other opioids and can also offer some benefit for neuropathic pain. Care should be taken because of its very long half-life. Frequent dosing may be needed to control pain initially, but the drug will then accumulate over days potentially leading to oversedation and respiratory depression.

Sedatives

Sedative agents are often a useful adjunct in treating suffering at the end of life, and can be useful for alleviating anxiety or for decreasing an awareness of pain when it is difficult to treat by other means. Benzodiazepines are a mainstay when sedation is required, and can be delivered orally, rectally, intramuscularly, or intravenously by either intermittent dosing or an infusion (44). Other agents may occasionally be necessary for sedation, such as barbiturates, but clinicians should be aware that barbiturates can increase the perception of pain so should only be used if the goal is depression of mental status. Neuroleptic agents may also be helpful, particularly when there is a component of delirium, but can have worrisome side effects (45). “Terminal sedation” is a phrase sometimes used to refer to the use of sedation to the level of unconsciousness at the end of life to treat symptoms that cannot be managed by any other means. Any sedative or anesthetic, such as propofol, could be used for this purpose, but such a degree of sedation is rarely necessary and should only be considered for intractable suffering not otherwise manageable. Ketamine is an NMDA receptor antagonist which functions as a dissociative anesthetic with excellent sedative and analgesic properties, but has the disadvantage of potentially leading to disturbing hallucinations, particularly in older children and at higher doses.

Other Agents and Adjuncts

Other medications such as tricyclic antidepressants or agents with anticonvulsant activity such as gabapentin and pregabalin can sometimes be useful in the treatment of neuropathic pain. Local techniques such as lidocaine patches or regional anesthetic blocks are also sometimes useful to control pain and enable a decrease in the total systemic dose of medications required. Nonpharmacologic interventions such as distraction, a calming environment, swaddling, and massage can also help with symptom management (39).

Treatment of Dyspnea

Nebulized analgesic agents such as morphine have been evaluated in several trials as a treatment of dyspnea, with mixed results (46). In the ICU, it is generally advantageous to use systemically delivered opioids for treating dyspnea, although nebulized agents can be tried if a patient or family wants a child to be able to remain as alert as possible. Physical measures such as blowing cool air in the face have also been touted as a treatment for dyspnea. Oxygen supplementation and noninvasive positive pressure ventilation are also potential options for treating breathlessness, but the burden-benefit balance should always be weighed of whether using such therapies leads to a greater or lesser degree of comfort.

Neurologic Symptoms

Many patients with neurologic injury or disease processes are at a high risk of disturbing events like seizures or myoclonus at the end of life. Benzodiazepines are often useful for intermittent seizures and the associated sedation may also be beneficial. For some children, such as those with brain tumors, in whom seizures may be possible, less sedating preventive agents like valproate or levetiracetam may be more appropriate (44). Myoclonus can be extraordinarily difficult to treat at the end of life, and the mainstay of therapy is to make sure that the child is adequately sedated, enough to prevent suffering and to reassure the family that the child is not aware of the movements.

Support of the Family

Family Needs

Each family with a child facing the end of life is unique with their own set of values and a wide variety of complex, changing needs. However, some common practices are discussed below.

Communication and Honesty

Communication is the cornerstone of providing good care at the end of a child’s life. Parents consistently report a desire for ample information in nontechnical language (47–49). Even in the face of uncertainty, or bad news, parents prefer honesty (49,50). Providers should carefully consider the language that they use in the delivery of information, and express empathy and compassion. Studies have demonstrated that single events like insensitive delivery of bad news, feeling dismissed or patronized, perceived disregard for parents’ judgment regarding the care of their child, and poor communication of important information can cause parents profound distress which can haunt and complicate grief long after their child has died (50).

Another aspect of communication is choosing the circumstances under which to deliver information—for example, choosing the setting, coordinating which members of the multidisciplinary team should be present, and which of the family members to include. The medical team must identify and respect the wishes of the parents or child regarding who should be present during discussions and in the patient’s room. Alerting the parents to the possible topics to be discussed can be helpful. Particularly with the delivery of bad news, parents report wanting preparation that bad news is coming (49).

Unfortunately, although the importance of good communication is universally recognized, patient information is frequently not communicated well in the ICU (51). Institutions have a responsibility to develop robust systems and training programs to provide strong foundations in communication strategies.

Patient and family meetings may help foster communication. Discussions with families are an important place to identify goals, values, expectations, and the medical status of the child. Family members should be asked open-ended questions about what they understand about their loved one’s condition, what they fear (52), and what they hope for (28). Then care providers should repeat what they have heard, which fosters trust and helps correct any misunderstandings. These meetings are also an important setting for identifying conflicts, whether they be between the medical team and family, between family members, and even between the family and the patient. Once identified, the family meetings can even serve as an appropriate environment to move toward resolving those conflicts. The American College of Critical Care Task Force calls for early and repeated care conferencing to reduce family stress and improve consistency in communication (49). In some adult studies, family meetings have actually affected patient outcomes. For example, in one study, the implementation of family meetings within the first 72 hours for patients at higher risk achieved significant reductions in ICU length of stay (53).

Including family members on rounds is a useful way to update parents and include them in daily decision making. Recommended as a standard of care (49,54), parents report preferring bedside rounds and feel better informed when they were present (55).

Partnership in Decision Making

Parents need to feel that they are active partners in the multiprofessional decision-making process. “Shared decision-making” is a process by which both the family and team share responsibility for making a good choice for a patient. The medical team may present a variety of acceptable medical options to a family, the family may share their perspective on the advantages of or problems with each option, and the team should then help guide the family to a reasonable decision (56). It can be problematic if the team insists on a certain course of action without considering a family’s opinions, but it is also a problem if the team dispassionately offers a family a menu of choices and awaits a decision without providing guidance based on accumulated medical experience. Making recommendations in light of an understanding of the values of the patient and family is an important responsibility of the physician. Often a series of meetings is required for the family and team to reach a consensus about the best course of action. When possible, having some consistency in the members of the medical team that attend family meetings is helpful in allowing the medical team to understand how the family’s views change over time. Innumerable authors and organizations now support some degree of shared decision-making (49,50,57). Recent studies in adult patients also suggest that incorporating the viewpoints of patients and families improves the quality of end of life care (58–62).

When a child is healthy, parents typically see their role as one of protector and provider for the child. This role is threatened by a critical illness and the ensuing loss of control. Helping parents to retain some sense of control can contribute to a higher quality of end of life care (60,63). Clinicians can help by supporting families in making whatever choices they are willing and able to make. Yet families must bear the burden of decisions long after the child has died. Partnering with the medical team should lessen the personal weight and be tailored to patients’ preferences and beliefs (57).

Hope

High on the list of family needs is to maintain hope (49,50). The need to maintain hope is often pivotal in understanding family dynamics and in eliciting trust and achieving consensus at family meetings. The diversity of hopes can range from the miraculous to the mundane and can adapt and change (28). Even as some hopes die, others emerge as seen with a hope for freedom from pain, a dignified death, or more quality time together. Families’ most bitter complaints have often been about physicians who dismiss their hopes (50).

Maintaining a Connection With Their Child

Parents express a variety of ways they wish to maintain a connection with their child both at the time of death and afterward. Creating memories with the child and family is extremely important. Helping the family be physically present around the time of a child’s death is a powerful way to maintain that connection. Also, family members may wish to collect a locket of hair or make handprints and footprints with paints on paper. Kits can be provided that allow a family to make a hand impression on clay or casting material. Mementos and pictures provide a tangible connection long after the child has died. Some parents and families maintain a connection to their child by building memorials and performing altruistic acts such as organ donation, volunteer work, charitable fund-raising, and support group development (48).

Religious and Cultural Needs

Families often have significant spiritual needs when a child is near the end of life (19,47,64). A child’s death can shatter even the most well-grounded person’s sense of purpose and meaning. Needs could include prayer, particular rituals, reading of sacred texts, and traditions for connecting with others, bereavement support, gratitude, and compassion (48).

Clinicians may understand the importance of spirituality and religious beliefs when a patient is near the end of life, but may feel unskilled and uncomfortable discussing these concerns (65,66). Studies recommend that physicians make an assessment of spiritual needs, identifying values, priorities, and help screen for spiritual crisis (48,67). Clinicians should listen empathetically without offering premature reassurance, or trying to alleviate the patient’s spiritual suffering (66). Physicians should be aware of services available, such as the chaplain service for referrals if desired by the family (68). Many religious traditions call for ceremonies and rituals at the end of life (69–75). Asking patients and families to share their spiritual needs also helps in working out the logistics for such preferences. Some patients have reported not wanting to share their beliefs with clinicians (76). An alternative is to ask in such a way that gives families the option, rather than feeling like a requirement, of sharing their needs and concerns (77).

Many families will have specific cultural needs. Culture, as opposed to race or ethnicity, refers to a pattern of learned beliefs, shared values, and behaviors, including styles of communication and relationships roles within the family (78). Many cultures including some Asian, Mexican, Middle Eastern, and African American cultures view the individual not as an autonomous entity, but as part of a network of family and social relationships (79). These beliefs are in sharp contrast with mainstream American and European culture where the individual and his/her beliefs are of highest importance (80).

Language difference can be a major barrier to families receiving optimal communication and care. The use of a professional interpreter is essential for important conversations. Children and family members should not be placed in the difficult and embarrassing situation of interpreting (81). Without a common language, the parents’ ability to understand and acquire complete information about their child’s condition is compromised. Language-discordant parents have reported feeling isolated, confused, and distrustful of the hospital system (50). Clinicians should make reasonable efforts to round with or be available to families when an interpreter is present. When having a sequence of family meetings, particularly surrounding difficult decisions, having the same interpreter helps foster consistent communication. Finally, a preconference meeting with the interpreter might be helpful to clarify what topics will be discussed, terminology that will be used, and whether the role of the interpreter will be one of strict linguistic translation or that of a “cultural broker” (82).

Support for Siblings

Families often worry about when to allow children to visit their dying sibling. Hospitals should support visiting protocols that allow siblings to visit even when typical visitation rules may exempt young family members. Child life specialists have valuable skills to prepare a sibling for what they are about to see, and provide creative outlets to express their emotions through various forms of play and artwork. These activities can sometimes be done in conjunction with family meetings, and provide a form of distraction for the young family members as the parents are making difficult decisions. Studies have reported that siblings benefit from access to playrooms during hospital visits, support groups, and respectful attention from staff (50,83).

Visiting Hours

The ability to visit the patient at any time is extremely important to families toward the end of life (49). Many hospitals have restrictions in place on the number of visitors allowed in a room at a time in order to allow staff to focus on safe and effective care for all patients. If a patient is dying, it may be possible to ease restrictions or perhaps rotate two family members into the room at a time. Creative ways of managing large families are important.

The Multidisciplinary Team Approach

Modern medicine can become extremely fragmented and requires extraordinary coordination of care involving interdisciplinary communication. This collaborative approach is crucial when working with a child and family near the end of life (84). Family meetings should include members of the multidisciplinary team, including the specialists involved so as to foster consensus on information delivered to the family. A team meeting a few minutes prior to bringing the family into the conversation is often helpful to achieve consensus. It may be important to include nurses, respiratory therapists, child life specialists, social workers, chaplains, and trainees. For some families, however, avoiding too large a group is also important as having the family be overwhelmed if substantially outnumbered by medical professionals.

Patient-Family Discussions, Controversies, and Resolving Disagreements

Difficulties in Prognosis

One of the most difficult questions, and one upon which so much hinges for both clinician and family is prognosis. Accurate predictions are elusive to even the most experienced clinicians and can be distorted by bias and previous experience. Validated, objective prognostic models have been viewed as a mechanism for improving clinical decision making in ICU, such as APACHE I-III (Acute Physiology and Chronic Health Evaluation), and MPM-II (Mortality Probability Models) (62) for adults, and the PRISM III (Pediatric Risk of Mortality) score (85) for children. Most such scores, however, are more appropriate for benchmarking populations or ICU performance and were not designed to be predictors of outcome for individual patients. Accurate prognostic information can be viewed as a tool to help save the lives of the salvageable and offer the dying a peaceful and dignified death (86), but such accuracy is often difficult to achieve in practice. A family undertaking a difficult decision deserves best estimates determined by validated tools and clinician experience, but clinicians should avoid being overly confident in their predictions in the timing of death, particularly when there is uncertainty. Family trust can be lost when such predictions turn out to be incorrect.

Resolving Conflict With Families

As discussed earlier, families need honest, complete information with good communication. A breakdown in these needs can quickly unravel into a relationship of distrust. In addition to planning structured family meetings, when conflict arises it can be important to take a step back and focus on building an alliance with the family, stressing common goals such as providing the best possible care for the child. Continuing to argue the same point of disagreement again and again is rarely productive.

Primary Attendings

A primary ICU attending can be helpful in resolving conflicts with families. Particularly at larger institutions, prolonged ICU hospitalizations expose the family to a myriad of differing management and communication styles. Some families may appreciate the differing opinions that this rotation offers. However, evidence in the adult literature shows that family dissatisfaction increases if more than two ICU physicians care for the patient (87,88). Contradictory information or conflicting recommendations regarding their child’s treatment can cause confusion and emotional turmoil adding an additional layer of stress (50). Having the family choose a primary ICU attending can offer consistency in style of communication and help build a trusting relationship. Although a primary attending will not be able to make every day-to-day management decision for the child, he or she can be a consistent person to attend sequential family meetings and provide a longer-term perspective to the team than can be extraordinarily valuable when having to make difficult decisions at the end of life.

Including Bedside Nursing Staff in Conversations

Of all the members of the multidisciplinary team, the bedside nurse spends the most time with the patient and family, and has a unique and important perspective. Including the bedside nurse on rounds, in conversations with the family, and in particular in family meetings can be of great importance in resolving conflict and ensuring a consistent message is delivered. Nurses often serve as a voice for families and through their advocacy role, help inform doctors about parents’ wishes (89,90), and make family meetings more productive and pertinent. After formal meetings are over, the bedside nurse is the staff member who most often helps the family summarize, clarify, and formulate new questions.

The role of the nurse at the end of life goes far beyond the benefit of helping to reduce conflict. Once the decision to discontinue life support has been made, for example, the burden of comfort care often rests with nursing staff (91,92). Some parents report the nurse being more involved during the dying process than other family members or friends (92). The bedside nurse can help parents anticipate color and temperature changes as well as assist with bathing and other activities. Nurses, however, should take caution to avoid imposing their value systems at the end of life. Some parents have been reported to act against their own cultural values, for example by being made to feel they had to hold their child after death, simply to please the nurse (93).

Education for nurses in end of life care has increasingly become recognized as a fundamental part of the nursing curriculum. In 1998, the American Association of Colleges of Nursing developed the document “Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care” that focused on core competencies now considered requisite for each graduate (94). The End-of-Life Nursing Education Consortium (ELNEC) is a national education initiative that gives nursing leaders training in palliative care skills for dissemination to nursing students and practicing nurses (94). Evidence is showing that the ELNEC project has increased effectiveness of new graduates and faculty expertise in end of life care (95). In addition to the initial training, ongoing end of life education has also been shown to be essential to meet the needs of all staff working in the PICU (96).

Other Support Personnel

Other members of the multidisciplinary team can often help provide support to the family and are often the source of conflict resolution when it exists between members of the staff and patients or families.

Social workers often develop relationships with the family and can explore social aspects affecting care. At the end of life, they can often assist in helping families find financial assistance with funerals and other expenses in addition to connecting with bereavement groups.

A chaplain can be a comfort to the child’s family, in the absence of or in addition to a family’s outside spiritual advisor. Chaplains are familiar with a variety of religious practices and can serve as intermediaries when understanding a particular ritual or practice that may be unfamiliar or even uncomfortable to the medical members of the team. They are trained to support families of varying beliefs nonjudgmentally. Even families with no expressed religious preference may suffer from spiritual distress when faced with a child’s death.

The primary care provider or primary specialist often have a long-standing relationship with the family, and can help illuminate sources of conflict or concern. Community pediatricians have been reported to fill unique roles of medical interpreter, advisor, and emotional support to families (92). Additionally, there may be other children in the family that the pediatrician follows, and whereas there may be little interaction with the rest of the medical team after a child’s death, the pediatrician may have a continuing relationship with the family and can be mindful of extended grief, depression, and the possible need for intervention.

Role of Palliative Care Physicians

Palliative care, which can be provided by the primary medical team or a dedicated service, is medical care focused on the relief of suffering and support for the best possible quality of life for patients and families facing life-threatening illness (97). Families sometimes experience a feeling of abandonment when the primary team that has an emphasis on a cure does not appear as active in the daily comfort care (98). Having a team that can focus on the transition from cure to comfort, and has the ability to work across the inpatient and outpatient setting can significantly reduce those feelings of abandonment. Palliative care teams are usually multidisciplinary, incorporating many of the disciplines described above including advanced practice nurses, social workers, child life specialists, and chaplains in addition to physicians who specialize in end of life care for children. Some hospices are often underprepared to care for children, particularly with regard to pain management (50), and will benefit from working closely with a pediatric team.

Ethics Committees

The responsibility for medical care and resolution of ethical issues lies primarily with the physician, the health care team, and the patient and his/her family. Additional techniques and personnel, as described above, are often sufficient for addressing challenging questions. When the medical team’s efforts have been exhausted, an ethics committee should be available for conflict consultation or advice about ethical dilemmas. Additionally, members of these committees may be particularly adept in facilitating physician and family/patient communication. Bringing in an “outside” perspective in this way can often help a family and team find creative solutions to entrenched conflicts. As a broader role, the ethics committee also serves to develop and implement care policies that support the decision-making process and promote care coordination (84).

Courts

Rare circumstances exist, where despite the best efforts of all the services involved, the family, patient, and medical team cannot come to a consensus. The escalation conflict can arrive to a point where resolution is impossible without legal intervention. The movement of decision making from the bedside to the courtroom, however, virtually eliminates those other roles described above that are skilled in conflict resolution. Additionally, the involvement of the courts necessarily makes adversaries of those involved by declaring a winning and losing side (99). The courts should therefore be used as a last resort when it comes to conflict resolution.

■ SUPPORT OF STAFF AND SELF-CARE

All members of the multidisciplinary team who work closely with patients at the end of life are subject to a wide variety of profound emotions. Identifying and acknowledging distress in staff members must be a goal. Fallibility, anger, sense of loss, frustration at lack of control, and grief are only some of the complex emotional issues described. Some team members also report moral distress and loss of professional integrity (100,101). These emotions can create future interdisciplinary conflicts and can substantially impact personal and professional life. Inadequate resolutions are not sustainable, and can eventually burnout. Proactive attention to preventing staff burnout is therefore essential (100).

Debriefings

Debriefing provides a structured setting for staff to manage and respond to their grief. Discussions should help staff realize that the physical, emotional, social, and spiritual responses they experience are normal, natural responses (100). Open-ended questions like “what was it like taking care of this patient?” can help different members of the team acknowledge the importance of communication, feel less isolated, and connect with colleagues. Ideally, the facilitator should be trained in the group processes, and in recognizing potential complications of grief. The session should also provide education on identifying important coping and self-care strategies, healthy expressions of grief, and the use of support systems (102).

Finding Meaning

When the team cannot save the patient, one important aspect of supporting the staff is by shifting the focus. Instead of finding purpose and meaning in saving the patient, focus must be transitioned to relieving patient suffering and helping the family. These goals are often attainable, and can provide an enormous amount of satisfaction even in the setting of tragic loss. Staff should be encouraged to make meaningful memories, and during debriefings discuss how they will remember the patient and family (100).

■ CONCLUSION

End of life care in pediatrics presents unique challenges for all families and clinicians. Ultimately, goals focus on managing pain and other distressing symptoms, communicating honest and accurate information, making decisions consistent with a family’s value system, and minimizing suffering whenever possible. Intensivists have the knowledge and experience gained from years of caring for children and their families at the end of life to be able to maximize comfort and be a guide through incredibly difficult circumstances. Skillful management of this transition is an essential final act in our care for our patients.

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