Pediatric palliative care focuses on the maintenance of quality of life for children and families, including a physical dimension that involves management of pain and distressing symptoms.²⁶ Nurses who provide care to these children face many challenges. Physical care is important, but nurses must also address the emotional and psychological needs. A holistic family-centered model of care encourages family involvement in a mutually beneficial and supportive partnership.²² This chapter explores the needs of children with life-limiting conditions and their families in the PCCU setting, and it presents nursing interventions designed to meet the needs of the whole family.

Indications

Each year, approximately 54,000 children die in the United States, many after a lengthy illness.³⁸ Most of these children die in hospitals, most often in neonatal and pediatric critical care units.¹¹ The death of a child is an intensely painful experience, both emotionally and physically. In the United States, it is estimated that 1 million children are living with a serious, chronic illness that impacts their quality of life. In the PCCU, most diagnoses are potentially life-threatening or life-limiting and include trauma, cardiovascular conditions, respiratory compromise, congenital defects, and neurodegenerative disorders. Palliative care services can be beneficial at many times in the illness trajectory including diagnosis, treatment, survivorship, or end-of-life.

Historically, palliative care has been provided at the end-of-life in homes or hospice residences, but a need to integrate palliative care principles from the time of diagnosis throughout critical care interventions is becoming increasingly common. A growing number of patients with complex medical problems are alive as the result of PCCU technology, but now are dependent on that technology to continue living. These children often have residual cardiorespiratory or neurologic problems and require technologic support that is unavailable in or impractical for the home care setting. For some of these children, survival outside the hospital might not be the best option.¹⁰ Therefore, many of these children ultimately die in the PCCU. The PCCU staff might find it difficult to switch from life-saving interventions to care that focuses predominantly on addressing the comfort and psychological needs common to dying children and their families. Some children’s hospitals are developing pediatric palliative care teams or centers to ensure seamless continuity of care from critical care units to the home, and to assist the team in providing the best possible care for children with life-limiting conditions and their families.

Approaches to a family-centered model of care

Nothing can realistically prepare parents or children to face a child’s life-threatening illness or injury, but experienced nurses can provide invaluable guidance and support. Palliative care services are appropriately applied to both curable and incurable conditions, and children’s lives may be enhanced when many of the services are applied early in the course of disease treatment. Most, if not all, children with life-threatening conditions fear death or reoccurrence and pain and suffering. Caring for these children presents unique challenges for parents and for healthcare providers. Key ethical concepts include distinctions between withholding and withdrawing treatment and possible consequences such as double effect. The doctrine of double effect is used to describe giving medications with the intention of making a child comfortable, knowing one possible consequence is hastening the child’s death.⁵¹ Inherent in illness is the potential for pain and suffering that may be eased through appropriate family-centered palliative care. Strategies that enable children and their families to express their feelings, to identify realistic hopes and expectations, and to focus on using their strengths to their best advantage can facilitate optimal coping and adaptation. Family-centered care that incorporates the child’s social structure and relationships is regarded as a comprehensive ideal for end-of-life care. ⁵¹

The Child’s Needs

Admission and Diagnosis

The most common condition requiring PCCU admission is respiratory distress requiring intubation. A conscious child with a life-threatening illness or injury will probably be extremely frightened by the PCCU environment, equipment, and interventions such as intubation, establishment of IV access, and insertion of additional catheters. The child may be especially bewildered when regaining consciousness.

Nurses in the PCCU should help assess the child’s and family’s feelings about a decision to intubate the child. However, if a child deteriorates suddenly and unexpectedly, resuscitation and intubation may be performed emergently before there is an opportunity to assess the family’s wishes. In some cases, the family is not ready to make a decision regarding attempted resuscitation, or allowing natural death. In any case, nurses in the PCCU must be prepared to respond to the child and family’s anxiety, fear, and anticipatory grief. It is important to talk with the child and family and offer explanations for therapy and procedures, even if it appears the child cannot hear.

Nurses can help families by providing careful explanations of events necessitating PCCU admission, the equipment present, and the care provided by the nursing staff. If the child is responsive, the child can be taught to communicate with the nursing staff. The child might be told, for example, that, because he has been very sick, he developed a problem in breathing, and that a soft tube (or airway or breathing tube) was put into his lungs (or into the windpipe) to help him breathe. The nurse might add that the staff is doing everything they can to help the child feel better, and the child’s parents and nurses will be close to his bed to care for him. Such communication is important even if the child appears to be unconscious. Call bells, alphabet and phrase boards, pointing, writing, and drawing can all help facilitate communication with the conscious intubated child.³⁹ ^,55

If intubation is not necessary, verbal communication is possible. The child’s questions can be more spontaneous, and the child’s answers can be more detailed and less influenced by the answer options provided by the parents or staff (i.e., not limited to yes or no). Conversations related to the PCCU environment may be stifled while the child remains in the PCCU. The child should be given many opportunities to express concerns, fears, questions, and preferences regarding care and termination of care (see Chapter 24; also see Special Considerations: Care of the Dying Adolescent in the Chapter 24 Supplement on the Evolve Website). Art and play therapy can provide a means of communication about the child’s fears, and discussion of the child’s art provides an opportunity to explore the child’s feelings (Fig. 3-1). Child life specialists can be particularly helpful in advocating for children’s wishes and assisting patients with self-expression (see also Table 2-1).

Fig. 3-1 The child’s view of the PCCU. Art can provide valuable insight into the child’s fears and concerns in the PCCU. This picture was created by a young school-age child.

(Drawing courtesy of Julie Wall.)

Physical Needs

Often the single most important aspect of physical care for the child with a life-limiting condition is the reduction or elimination of pain; however, studies have shown that many children are not adequately medicated to relieve their pain.¹⁶ ^,32 ^,56 While physicians and nurse practitioners will prescribe analgesics, nurses have a major role in recognizing and relieving pain. To identify and quantify pain and to evaluate the effectiveness of analgesics, the nurse should assess both physiologic and behavioral manifestations of pain (see Chapter 5 for further information).²⁶ ^,40 ^,44 Although it can be extremely difficult to determine whether a preverbal, intubated, or obtunded child is in pain, the nurse can identify signs of distress through close observation of the child’s heart rate, respiratory rate, breathing effort, pupil size, muscle tone, and facial expression. The presence of a facial grimace or guarding, tension or flexion of muscles, pupil dilation, tachycardia, tachypnea, and diaphoresis all can indicate the presence of pain. If the nurse is unsure whether symptoms of pain are present, the nurse should ask the parents to assist in the determination of the child’s level of comfort.

Pain control uses both pharmacologic and psychologic measures (see Chapter 5 for further information about assessment and relief of pain). Although administration of analgesics can result in double effect, pain relief should be the most important physical consideration when death is inevitable.²³ When healthcare team members are able to acknowledge that the child may be dying, the dying child is more likely to receive adequate analgesics

Specific treatment for dyspnea and respiratory distress in the PCCU are highly variable and need to be individualized, based on the underlying source of the dyspnea and the child’s level of consciousness and needs (see Principles of Withdrawing Life-Sustaining Treatments in the Chapter 24 Supplement on the Evolve Website). Supplementary oxygen, corticosteroids, diuretics, and bronchodilators may be useful approaches to care. Another relatively common symptom seen in dying children in the PCCU is delirium, which can be calm or agitated. Delirium decreases a child’s ability to receive, process, and recall information and can be mitigated with the reduction of noise and lights and by the presence of family members or familiar staff.⁵¹

Comfort measures are often as important as life-saving measures to a child with a life-limiting condition and to the child’s family. These measures can include but are not limited to soothing baths and backrubs, opportunities to be held and to play with favorite toys and pets, and diversional activities such as computers, movies, and favorite music. Such activities can reduce anxiety and pain and relieve the impersonal atmosphere of the PCCU environment.²³

Establishing and maintaining a daily schedule, including times for rest and sleep, is extremely important. Meticulous skin care, comfortable positioning and frequent repositioning, hygiene, and the preservation of optimal bowel and bladder function are all components of good nursing care. This care assures the child and family that the staff members remain committed to the child’s care.

Emotional Needs

Establishment of effective communication is often challenging for family members, even when all are in good health. It can be especially challenging to establish effective communication for the child with a life-threatening condition, the child’s family members, and the child’s healthcare providers, because the child’s condition, treatment, and prognosis introduce additional stresses and fears (see Fig. 3-1). There are several critical points during the continuum of care when communication is especially important: at diagnosis, during exacerbations, and at the end of life. Frequently these critical points occur in a PCCU. Initiation of palliative care services might be delayed because it is difficult for families and healthcare providers to accept the fact that further curative treatment will be futile.

Open and honest communication among healthcare professionals and families is difficult but essential, especially when confronted with uncertainties. Families are frequently overwhelmed, and nurses may need to take an active role in identifying the family’s wishes and desires and ensuring that the patient, family members and healthcare providers communicate effectively.

Parents will likely find it especially difficult to talk with the child about the severity of the child’s condition and poor or fatal prognosis. In a recent survey of parents after the death of a child with cancer, none of the parents who discussed death with their children regretted the discussions, while many of those who did not have such conversations wished they had.³¹ Parents were most likely to regret their failure to discuss death if they sensed that their child was aware that death was imminent.³¹ The nurse is often the best person to help the parents begin such discussions at appropriate times, and the nurse can help the parents to answer the child’s questions, reduce the child’s fears, and address the child’s concerns.

Jason, aged 8 years, was critically ill and awaiting a heart transplant. Several days before Christmas, he was hospitalized in the PCCU with severe heart failure and low cardiac output. As the days passed, Jason became more agitated, and it was clear that something was bothering him. Jason’s mother was initially reluctant to ask Jason what was wrong, because she was afraid he would want to talk about dying. She was concerned that her grief and sadness would overwhelm her during the conversation and she would be unable to give Jason the support he needed. After discussions with the nurse, Jason’s parents agreed that they needed to talk honestly with Jason so he would know that he and his parents were working together. When Jason’s parents asked Jason what was wrong, Jason stated that he knew he might die before Christmas, and he was concerned that Santa would not know what to do with his new toys. Jason’s mother asked Jason what he would want Santa to do, and Jason asked if he could leave Santa a list, so Santa could give Jason’s toys to cousins and friends based on Jason’s wishes. The nurse gave Jason’s mother a piece of paper and a pen, and Jason’s mother wrote the list as Jason dictated it. Once the list was complete, Jason was peaceful, with no further signs of agitation. He died that night, with his mother and father at his side.

Spiritual Needs

Spiritual needs such as love, faith, hope, and beauty motivate human experiences, emotions, and relationships, and suffering can occur when these needs are not met.⁵ Palliative care attempts to address spiritual needs, bringing the child and family together around personal and private attempts to cope with questions about life and meaning that frequently result from feelings of powerlessness and helplessness.

It is important for healthcare providers to listen to families without using religious platitudes. Nurses and other members of the healthcare team can provide psychosocial and spiritual guidance consistent with family values, ideals, and choices.⁴¹ Nurses can provide a safe place where spiritual needs, uncertainty, and hope can be expressed. If hope for cure is no longer realistic, nurses can assist families in realizing other wishes, such as hoping the child does not experience pain or that the child is not alone when death comes.²² As a need for palliative care becomes apparent, parents may have intense spiritual needs. Nurses can support families through caring presence, words, and actions to foster trust.³⁵

The Family’s Needs

One of the most important needs of children who are dying or have life-limiting conditions is the need to have ongoing, close contact with their families. Parents should be encouraged to remain with the child as much as possible, given their other responsibilities as parents and providers and their emotional ability to be present. Visiting regulations should be altered (if needed) to ensure that dying children have a private place to see their siblings and say good-bye. The child also may need to see grandparents and other close family members or friends. Because these visits could be the last contact between a critically ill child and family members, they are extremely important and should be facilitated.

Parents use a variety of strategies in response to the stress of a child’s illness. Coping involves conscious efforts to regulate emotion, behavior, and the environment through one’s response to a stressful event. Coping has been described in work with adolescents as either voluntary engagement coping or voluntary disengagement coping.¹⁴ Voluntary engagement coping includes primary control coping with direct attempts to influence stressors (e.g., problem solving, emotional expression, emotional regulation) and secondary control coping with attempts to adapt to the stressor (e.g., acceptance, cognitive restructuring, positive thinking, distraction). Parents and siblings can use either type of coping in dealing with a stressful situation, but when a situation is out of their control, evidence shows that secondary control coping seems to work best.¹⁵

Some parents might withdraw or simply avoid visiting the child. This is an example of voluntary disengagement coping, which is described as efforts to distance oneself emotionally, cognitively, and physically from the stressor. There is little evidence that disengagement coping is helpful in the grieving process.

Michael, a 6-month-old infant with congenital heart disease, Down’s syndrome, and choanal atresia was mortally ill, but his parents rarely visited, and refused to discuss a “do-not-attempt resuscitation” status. The staff became increasingly frustrated because Michael continued to suffer with no hope of recovery. An interview with the parents revealed their lack of insight regarding his medical condition, their unrealistic expectations for his recovery, and their belief that his life was in God’s hands. They stated that if Michael was going to die, he would, but meanwhile treatment must continue. To help the parents understand the gravity of Michael’s condition, the staff began to consistently make observations about his deterioration during daily telephone calls to the parents. In addition, a home-health nurse began to visit the parents to help them share their feelings of hope and loss. Eventually, Michael’s parents were able to return to the hospital and discuss the removal of mechanical ventilation. They held Michael in their arms as he died.

Special situations affecting timing of death

Withholding or Withdrawing Treatment

Nurses often play an important role in helping parents make decisions about withholding treatments or attempted resuscitation or withdrawing therapy. The nursing staff members continuously observe the extent of the child’s suffering and its effects on the child and family, so nurses are often the best people to speak on behalf of the child and family. However, nurses must be able to objectively represent the concerns of the family during discussions with the healthcare team and must encourage parents to express preferences regarding treatment. The nurse must avoid adoption of a crusading approach during these discussions. If the nurse assumes a spokesperson role, that nurse is obligated to speak only for the child and family; the nurse’s personal opinions must be clearly distinguished from the expressed preferences of the child and family. Families benefit from and value a healthcare team that provides clear information and that hears and respects the family’s decisions.⁴⁰

Usually a decision to withhold or withdraw life support, such as ventilators, extracorporeal membrane oxygenation (ECMO) and other life-extending therapies, is made before the child dies in an intensive care setting. It may be difficult for the healthcare team to broach the subject of treatment limitations or withdrawal or establishment of do-not-attempt resuscitation orders. It is even more difficult for parents to participate in such decisions. Some states have legislation to address “allow natural death” decisions, which may be much easier for parents to affirm.

Emotional, religious, philosophical, legal, and ethical considerations are involved in these complex decisions. If such decisions are avoided, the terminally ill or dying child might be subjected to futile resuscitation attempts or might be forced to endure painful treatment, intubation, or surgical procedures. Often these treatments carry the risk of the most feared aspects of death: pain, loneliness, separation from parents, and loss of control. Nurses can help the child and family plan elements of a child’s last hours or days by facilitating decisions about who should be present, the location, and the timing for withdrawal of life support (see Plan for Withdrawal in the section on Principles of Withdrawing Life-Sustaining Treatments in the Chapter 24 Supplement on the Evolve Website).

If staff members and parents are unable to reach a decision about treatment termination or limitation, outside consultants may be needed to help the family and healthcare team consider the treatment options available. Historically, the federal government,⁴³ medical¹³ and nursing³ disciplines, bioethics groups, and the courts⁴ ^,12 have all played a part in addressing controversial issues. In the 1980s, federal legislation recommended formation of infant care review committees; in many hospitals these groups evolved into multidisciplinary ethics committees. Consultation with these committees can provide extremely helpful insight into the options available for the child. However, most decisions regarding treatment termination must still be made in consultation with the parents and the child’s primary physician, in accordance with state laws (see Chapter 24 for further information).

Futility legislation authorizes a healthcare team to withdraw suggested treatment if further life support is deemed medically inappropriate by the ethics committee and the hospital gives the family 10 days’ notice and attempts to transfer a child to an alternative provider.⁵⁰ Because this legislation was passed in Texas, it is not recognized everywhere. In addition, laws can vary by state. A court order may be requested by a child-protective agency before life support is terminated for a severely ill child who is under protective custody (see Chapter 24; also see Foregoing Life-Sustaining Treatment in Children with Inflicted Trauma in the Chapter 24 Supplement on the Evolve Website). Such requests are based on individual agency policy rather than state or federal law. A court order is not required to remove ventilatory support when a child has been pronounced brain dead. These patients have died, and treatment should be discontinued (unless organ donation is pursued).

Occasionally parents continue to deny the child’s death after brain death declaration and may require a few hours to accept the diagnosis; under these conditions, the ventilator may continue to provide ventilation for a few hours (or overnight) to allow the family time to come to terms with the child’s death. The child is considered legally dead, however, when brain death is pronounced.

Limitation (or prevention) of attempted resuscitation requires a written document signed by a physician. Because verbal orders regarding resuscitation can be subject to confusion or misinterpretation, they should not be accepted. In the absence of a written order to the contrary, resuscitation must be initiated in the event of an in-hospital patient respiratory or cardiac arrest. However, an unsuccessful resuscitation attempt can be discontinued at any time by the physician in charge of the resuscitative efforts. If the family agrees with withdrawal of support—and only after they have made the decision to withdraw support—they should be offered the option of organ donation after cardiac death (DCD).³⁰

Organ Donation

Although discussion of organ donation can be difficult, parents might initiate the discussion. Federal law requires that hospitals have protocols for identification of potential organ donors. In the United States and Puerto Rico, organ procurement organizations coordinate organ acquisition in designated service areas (these areas can cover all or part of a state), evaluate potential donors, discuss donation with family members, arrange for the surgical removal of donated organs, and preserve organs and arrange for their distribution according to national organ sharing policies.⁵²

The Joint Commission also requires hospital protocols for determination of brain death and identification of potential organ donors.²⁸ If solid organ transplantation is desired, the patient must be declared dead before these organs can be used; brain death or cardiopulmonary death criteria can be used. The coroner should be consulted if the circumstances of the child’s death necessitate a postmortem coroner’s examination. Most coroners will still allow organ donation.

When a child dies suddenly, shock, disbelief, and denial can prevent parents from focusing on decisions regarding organ donation. The staff member who is closest to the parents is usually the best provider to introduce the possibility of organ donation as soon as the healthcare team realizes that the child will die and determines that organ donation is feasible, but a healthcare team conference is generally indicated to determine the best family approach. Because parents need time to absorb the reality of the child’s impending death and to address the issue of organ donation, the idea should be introduced early, and the parents must be given sufficient time to make a decision.

Parents will benefit from hearing about the positive aspects of organ donation, and they will require information about the logistics of the surgery involved. Solid organ donation will require several hours of preparation and surgery, and incisions will be made in the child’s body. However, most organ donation can be accomplished without delaying typical funeral arrangements. A coordinator from the local organ procurement agency should be contacted whenever a potential organ donor is identified; these coordinators can be extremely valuable resources for the hospital staff and family. They also will communicate with the family (if the family agrees) after organ donation has occurred, to keep the family informed in general terms of the results of organ transplantation.

Regardless of the parents’ decision about organ donation, the child’s body should always be treated with respect and sensitivity. Any movement or treatments should be performed gently. Parents often have expressed satisfaction in seeing that their child looked clean and well cared for, even after pronouncement of death.

Organ Donation after Brain Death

The concept of brain death is poorly understood by the general public, and most parents have misconceptions about the process and the outcomes of organ donation. Following death, many parents have stated that donation of their child’s organs helped them to find meaning in their own child’s sudden and untimely death. Surveys have shown that parents from lower socioeconomic and educational backgrounds may be less likely to consent to organ donation as a result of religious beliefs and personal attitudes.¹

Organ donation should not interfere with the parents’ need to see and hold their child for a final time. Despite the fact that the child will be intubated and mechanically ventilated, it is beneficial to offer the parents the opportunity to hold the child, because this will be the last time they will be able to feel the child’s warmth in their arms. It is a vital step in grief resolution.

Alex, a 2-year-old child, was killed suddenly when he darted across the street into the path of an oncoming car. His parents, trying to find meaning in their sudden tragedy, agreed to donation of Alex’s kidneys and liver to enable another child to live. Alex’s mother asked to hold her son before he went to the operating room. The PCCU nurse in this small community hospital was upset by the death and insecure in caring for the child. She refused to move the child from the bed, for fear of displacing the endotracheal tube. The parents said good-bye to Alex standing at the side of his bed. Weeks later, the mother remained inconsolable about that last memory, and felt that she was robbed of the opportunity to embrace her son one last time.

Once the child is pronounced brain dead, it is imperative that the entire healthcare team understand that the child has, in fact, died, so that the parents are not confused by the team’s use of inconsistent terminology. The staff should not refer to a ventilator as life support, because it cannot support the child’s life. The ventilator is continuing to oxygenate the blood, so that the heart will continue beating and organs will continue to receive oxygen until donation occurs. However, the ventilator cannot support life, because the child died when the brain ceased to function.

Organ Donation After Cardiac Death (DCD)

Organ DCD, previously called nonheartbeating organ donation, allows families to donate organs after cardiac arrest. Although this method of organ donation was first described in the 1960s, the process has become more refined and more common in recent years. It is important to note that the patient considered for DCD is not dead and does not become a donor until cardiac arrest occurs.

Uncontrolled DCD is a less common form of DCD that can occur if family members consent to immediate organ donation after the patient dies following a sudden cardiopulmonary arrest and an unsuccessful resuscitation attempt.⁴⁶ After death pronouncement, the donor is moved to the operating suite or ECMO is rapidly instituted to allow organ recovery under more controlled conditions.

Controlled DCD is the most common form of DCD currently used. In this form of DCD, withdrawal of support is planned in advance. Controlled DCD occurs when a patient has catastrophic, unrecoverable brain injury or insult that does not meet criteria for pronouncement of brain death, but does result in a family and medical decision to withdraw support. The patient then becomes eligible for organ donation and, if the family consents, support is withdrawn in a sequence that will allow rapid organ recovery within minutes of cardiac arrest and pronouncement of death. During withdrawal of support, at the discretion of the child’s primary physician and according to end-of-life hospital protocols, opioids and sedatives are typically administered to minimize patient discomfort.⁴⁶ In some cases, heparin is also administered to minimize formation of thrombi in the donated organs.²⁹ ^,46 When support is withdrawn and cardiac arrest occurs, the child’s primary medical team makes the pronouncement of death. A waiting period of 2 to 5 minutes is required either between cardiac arrest and pronouncement of death or immediately after pronouncement of death. Organ recovery cannot begin until after both the pronouncement of death and the waiting period have been completed.⁴⁶

ECMO support can be used as part of the DCD protocol to allow controlled, unhurried organ recovery and improve the perfusion of donor organs before procurement.³⁴ Premortem ECMO cannulation can occur in the PCCU to facilitate institution of ECMO immediately after the pronouncement of death and the waiting period of 2 to 5 minutes have elapsed.

DCD requires careful planning and coordination.²⁹ All members of the healthcare team should be aware of the protocol and the precise sequence of actions, and the team should rehearse the complete sequence before it is actually implemented. When discussing the parents’ final visit with their child, the nurse should discuss the timing and sequence of all important steps, the equipment likely to be present, whether surgical drapes will be placed before death, and when the child is likely to move from the PCCU. If it is necessary to rapidly move the child to the operating suite after cardiac arrest, the parents should be aware that such movement will occur. The parents should be assured that the child’s primary healthcare team will care for the child until the child dies and the primary physician makes the pronouncement of death.⁴⁶ The physicians should explain the comfort measures that they will provide for the child during withdrawal of care and before death. Parents should also be aware that they have the option of stopping the donation process if it becomes too uncomfortable or upsetting for them.³⁰

Although members of the organ procurement agency will explain the process to the family before it begins, no member of the organ procurement team has responsibility for or involvement in the care of the child (i.e., before pronouncement of death); they will assume responsibility for the donor after pronouncement of death. Minor exceptions to this policy can include preretrieval blood sampling or administration of medications to enhance organ viability.⁴⁶

Parents should be prepared for the possibility that attempts for DCD can fail because the interval between withdrawal of support and cardiac arrest is unpredictable. If the interval is too long, the organs may become ischemic and unsuitable for donation. In general, if cardiac arrest does not develop within 60 to 90 minutes ²⁹ ^,34 after withdrawal of support, the patient is no longer considered a candidate for DCD. In such instances, care will continue to be provided by the child’s primary care team.²⁹ Tissue donation may still be possible after the child dies.

Interdisciplinary collaborative care

Interdisciplinary collaboration is essential to provide the highest quality of care for children and their families. Social workers can provide support and access resources for the family. Child life specialists are particularly adept at helping children express themselves, even when children are nonverbal. Occupational therapists, physical therapists, recreational therapists, pharmacists, chaplains, ethicists, and volunteers all can add to the richness of care and compassion available to critically ill children and their families. If there is a need to transition to outside resources such as hospice, it is important to discuss the transition as early as feasible to allow parents time to adjust to changes in the goals of care. Hospice services can be introduced as resources in the community, available to address physical and emotional pain if and when a child is able to go home.

Professionals in each discipline need to be aware of verbal and nonverbal communication styles. Healthcare providers should be aware of their own spiritual and cultural beliefs and should be careful to avoid imposing them on the child or family. Providers should also identify potential barriers to communication, learn and practice effective communication skills, and remain attentive to intrateam communication styles, skills, and needs. Providers must also develop conflict resolution skills. They should avoid professional insensitivity (e.g., interrupting, patronizing) and avoid physical or emotional distancing. They should cultivate empathy, compassion, humility, and altruism.

Nurses must address their grief needs to avoid the effects of cumulative grief. They should create opportunities to debrief after an intense experience, sharing feelings and brainstorming about what went well and what should be improved. In some hospitals, palliative care teams or crisis intervention teams may be called to support the staff.

Support of the family at or near the time of death

Talking about Death

Despite great strides in the treatment of life-threatening conditions, many of the characteristics of childhood conditions create significant challenges to parents and healthcare professionals who are communicating with a sick child about the child’s illness.⁵⁴ Features that make communication challenging include the complex nature of the disease, the aversive nature of some treatments, the probability of adverse side effects, and the possibility that treatment will be unsuccessful or that the child could die from the condition. From the time of initial diagnosis and throughout the course of treatment, parents often need to talk with their children about their feelings. Parents bear the primary responsibility of filtering information and making decisions for their children. They must assimilate enormous amounts of information during an intensely emotional time, and then facilitate their child’s understanding of this information. When treatment is not successful and a child is in the terminal phase, these difficulties can be magnified.

The National Cancer Institute recommends that parents and healthcare professionals communicate openly with children about cancer, even when children are being treated palliatively.³⁷ Because the death of a child is an intensely painful experience, few studies have examined communication strategies in families dealing with end-of-life circumstances. Thus, parents receive relatively little evidence-based guidance about the optimal ways to communicate with their child about cancer or the possibility of death.

There is general agreement that terminally ill adolescents are anxious about and aware of their severity of illness and prognosis. Studies of ill school-aged children have demonstrated that terminally ill children 6 to 12 years of age demonstrate more hospital-related anxiety, a greater awareness about hospitalization, more preoccupation with intrusive procedures, and more concerns about death and mutilation than do similar chronically ill children who are not terminally ill.⁴² Thus, even if the child has not been informed of the fatal prognosis, the child may be aware of and anxious about impending death.

The nurse should consider the child’s psychosocial developmental level and the ability of the child to understand when discussing concepts such as terminal illness and death. Examples of questions frequently asked by children and some suggested responses are included in Table 3-1.

Table 3-1 Potential Responses to a Dying Child’s Questions About Death

Question or comment	Response
Am I dying?	“You are very sick and I am worried about you. It is possible that you might die, but we are doing everything we can to help you. Are you afraid of dying?”
	Following the child’s answer, the nurse can explore the child’s specific fears.
I’m afraid to die	“Can you tell me what scares you the most?”
I’m afraid to die	The nurse can explore the child’s perceptions of death and reinforce the positive concepts and reduce the negative concepts. At all times, it is important to tell the child that he or she will not die alone; someone will always be with the child.
I don’t want to die	“I can understand that—I don’t want to die either. What is the worst thing about dying to you?” or, “What does dying mean to you?”
	The nurse then can explore the child’s concerns.

The child may express anger at parents or hospital staff; this anger may reflect the child’s inability to discuss impending death or the child’s perception that such discussion is not acceptable. Anger and frustration are also understandable responses to painful and invasive therapy. It is important that the nurse explain the child’s reaction to the family, so the family’s feelings of guilt are not compounded. The family (when they are able) and the healthcare team must communicate receptiveness to the child’s questions about death. The family also should have the opportunity to remain with the child to communicate their love and support, so the child does not feel abandoned. In addition, the nursing staff must avoid reacting defensively to the child’s fears and frustrations. It is important to reassure the child that he or she will not be alone.

Hope can seem to be elusive when a child is confronted with impending death. There are, however, many flavors and colors of hope. When asked what they hope for, most parents will respond, “We hope for a miracle.” The nurse might respond, “I certainly do too, but if that’s not possible, what else do you hope for?” At that juncture, parents may respond that they hope their child is not in pain or that they are with their child when the child dies. Those are hopes that nurses can realistically help meet.

Angela, a 6 year old with severe cardiomyopathy, had been intubated in the PCCU for a month. As her condition worsened, she became less communicative and appeared uninterested in her surroundings. The nurse mentioned this to Angela’s mother, and together they agreed that Angela might be concerned about dying. The nurse and the mother asked Angela if she ever thought about dying. When Angela nodded, the mother, with the nurse’s support, asked Angela about things that might make her sad. “Are you afraid to die? Are you wondering what it will be like? Are you worried about what will happen to me?” Angela pointed to her mother and indicated that her main concern revolved around how her mother would handle her death. The mother told Angela that she would be very sad and would miss her. She then emphasized that she would have many happy memories and would be all right. The nurse promised to continue to help Angela’s mother after Angela’s death. Angela died peacefully the next day.

While parents are key participants in the discussion of death with a dying child, they often will require assistance from healthcare professionals. Children may express their awareness of the seriousness of their illness, their concerns about dying, or their premonitions of their own death.⁵⁴ This can pave the way for open discussion with the parents.⁷

Maria had been terminally ill with cancer for several months when she shared a special dream with her father. In the dream, angels came and asked her to play with them. After describing the dream, Maria asked her father if it was all right to join the angels. The father was upset about the dream, and told Maria not to talk about such things. Two days later, Maria suffered a respiratory arrest and was intubated and transferred to the PCCU. It was then that the father discussed Maria’s dream with a nurse. The nurse helped the father explore the potential meaning of the dream and his own feelings of dread about Maria’s impending death. The father then was able to talk to Maria again about the dream, and told her that it was OK to play with the angels whenever she was ready. Maria died the next day.

Not all families can sustain or endure open communication about death, because family members are dealing with their own anxiety, grief, fear, and coping strategies. Nurses should assess the family’s level of grief and philosophical and emotional response to the impending death. The nurse can gather information about the family’s views of death by asking about religious backgrounds, values, beliefs and previous experiences with death and loss. The nurse also must determine the specific information provided to the dying child and to other family members. This will enable the nurse to assess the family’s beliefs about and ability to cope with the child’s death and to support the child.

When family members have difficulty expressing their fears and concerns about death, a physician, primary nurse, clinical nurse specialist or nurse practitioner who has an ongoing relationship with the child and family may be able to help the child and family discuss the child’s potential death. The nurse can keep the family and the healthcare team informed about information provided to or by the child, so that the child’s fears can be addressed in a consistent fashion. The nurse should observe the child’s responses closely, help the child communicate concerns, and be prepared to answer the child’s questions honestly while maintaining an element of hope. Nurses may wish to tell children and their families that the healthcare team is hoping for the best, but preparing for anything that could happen. Children who are dying may express anxiety about pain, loneliness, separation from parents, and loss of control, so these issues should be addressed. It is important to help the child understand the reaction of family members; too often, the child interprets the family’s anxiety and depression as rejection or loss of love.

Support During Attempted Resuscitation

When a child suffers an unexpected cardiopulmonary arrest and resuscitation is attempted, healthcare providers must be clear and compassionate when communicating with the family. Most family members prefer to be present during the attempted resuscitation of a family member. Family members who were present during an attempted resuscitation reported that it was helpful to the (surviving) child and to the family members.²¹ In addition, standardized psychological tests suggest that family members who are present during an unsuccessful resuscitation attempt demonstrate more constructive grieving behavior than those who are not given the option to be present.⁴⁷ In a recent prospective, alternate day study, family presence did not affect the efficiency of 283 pediatric trauma resuscitations; there was no difference in time to milestones such as computed tomography scan or time to complete the resuscitation when family members were present, compared with time required in 422 resuscitations without family presence.²¹ Since 2000, the American Heart Associations Guidelines for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care have recommended that family members be offered the option of remaining with their loved one during attempted resuscitation whenever possible.² ^,6 If family members remain at the bedside, the resuscitation team must be sensitive to their presence, and one staff member (e.g., nurse, chaplain, social worker) should remain with the family to answer their questions, explain what is happening, and assess and address the needs of the family members.²⁵

If parents are not able or choose not to be present during the attempted resuscitation, they should not have to wait for long periods with little or no information. Such waits will increase their anxiety and frustration. At least one staff member should act as a liaison to communicate with and support the parents while the resuscitation is in progress. This liaison should keep the resuscitation team aware of the parents’ questions and the information provided to the parents, including specific terms used.

Parents should be asked whether there is anyone they would like to contact, such as clergy, members of their church, special friends or family. The family should have access to a telephone so they can make local or long-distance calls to contact family and friends. Note that cell phones might not function well inside hospitals, so staff members should be sure to offer a working telephone, as needed.

Throughout the resuscitation attempt, the parents should be informed about the child’s condition and the treatment measures provided. Although it is important to provide some hope until the child’s condition is determined to be hopeless, the possibility of the child’s death should be discussed. This discussion will allow the parents to begin to prepare themselves. One of the major challenges in communicating with parents of critically ill children is the need to balance hope with reality. Statements about the child’s condition must be direct and sensitive and should involve the use of carefully chosen terms, rather than use of medical jargon or clichés. Phrases such as “He is seriously ill and may die” are more appropriate than “His condition is deteriorating,” “He just fell apart,” or “We couldn’t get him back.” Word choices are extremely important when talking with families and even carefully selected words can be misinterpreted, especially when a family is stressed (Table 3-2). The American Heart Association Pediatric Advanced Life Support Course has an excellent supplementary module to help teach healthcare providers to discuss a child’s death with parents.²⁴

Table 3-2 Language Matters

Health Provider Statement	What the Family May Hear
He’s stable. (Child is supported by vasopressors, ventilator, dialysis.)	He is getting better.
She gained weight. (Child’s heart failure is worsening.)	She is growing well like a healthy child.
Do you want us to do CPR?	She may survive if we do CPR
Do you want us to intubate him?	He has a chance if we place a breathing tube and provide mechanical ventilatory support.
Ambiguous Terms	Clear Description
Do you want us to do everything?	Although we’ve tried many treatments for several days, unfortunately, Jason is too sick and they are not helping him to get better.
It’s time we talk about pulling back.	We want to provide the care that Allison needs now. Her comfort is now our highest priority.
I think we should stop aggressive therapy	We will change our goals of care to respect her wishes.
There is nothing more we can do	Let’s stop treatments that are not helping him.
Helpful Language
I wish things were different.
I hope he gets better, too, but I think it is very unlikely.
How do you and your family usually deal with difficult conversations?
We hope for the best, but we need to prepare for whatever may happen.

If the child suffers a cardiac arrest, the parents should be told that the heart is not beating and that it may be difficult to help the heart start beating again. Such information is clear and concise. Parents should not be expected to understand the difference between cardiac arrest and respiratory arrest or the meaning of medical terms such as ventricular fibrillation or asystole.

Communication should be provided at regular intervals, and the family should always know when they will speak to the physician or nurse again. Usually, quarter-hour intervals are appropriate for periodic reports. Of course, any changes in the patient’s condition also should be communicated immediately to the parents. During these reports, the parents should be given progressively more pessimistic information as the child’s prognosis becomes more grave. For example, the parents may initially be told that the child “stopped breathing,” but that the nurse was “providing breaths using a mask and bag and oxygen.” On a second visit, the parents may be told that “despite the help of the nurses and doctors, the heart slowed and stopped beating,” and that this is “usually a sign that the heart is suffering from lack of oxygen.” Each time the parents should be assured that the doctors and nurses are helping to give oxygen and circulate the blood with CPR (this term is likely familiar to most parents, and more familiar than resuscitation).

If interventions such as extracorporeal circulation are considered or will be provided, the staff should describe the therapy in simple terms, focusing on what the family will see and emphasizing that the child is unconscious and is not afraid or in pain. This is not the time for comprehensive discussion of the technology or risks and benefits, but family members will require a brief overview of the rationale for and goals of the therapy. As soon as the child is more stable, the child’s physician should discuss any procedures or treatments, including risks and benefits, in more detail.

If a child does not respond to continued resuscitative efforts, parents can be told that “the longer the heart is unresponsive, the more worried the doctors are that the heart will not start beating on its own.” At this time the parents often voice concerns about the futility of the resuscitation, or the worry that the child has suffered damage to all organs. By the time resuscitative efforts are discontinued, the parents may be better prepared to hear that the child has died.

Expected Death

If, after consultation among family and healthcare providers, a decision is made to allow a child’s natural death without attempted resuscitation or other intervention, the healthcare team should continue to keep the family informed of changes and provide aggressive management of symptoms, including pain. The healthcare team should describe how the child’s breathing and appearance may change just prior to death. The amount of sedation and analgesia the child receives also should be discussed with the parents. All parents will want the child’s death to be pain-free; some parents will wish that the child remain as alert as possible, while other parents will request that the child be sedated. The child’s wishes should also be determined, if possible.

The child and family should be moved to a private area of the unit. However, this privacy should not isolate the child from the nursing staff. If a private room is available, any limits to visitation time and number of visitors can be relaxed, allowing several family members to visit at the same time. Nurses should encourage parents to continue to eat and to rest in order to maintain physical strength, but should not force parents to leave the bedside if the parents are reluctant to do so. The healthcare team can order food trays for the parents, if they desire to stay with their child. If the parents leave the bedside, they should be reassured that they will be summoned back if there is any change in the child’s condition. Healthcare providers should record the family’s cell phone and pager numbers (the devices may be supplied by the hospital), and the family should know how to call the child’s nurse and physician directly.

The family might ask that a clergy member be summoned, or the nurse can suggest that a hospital chaplain be called. In addition, the nurse should provide adequate analgesia to the child and ensure that the parents are aware that the child is comfortable. A nurse should remain with the child and family (or be present in the immediate vicinity to meet the family’s needs), and cardiac monitoring alarms should be silenced if at all possible. When any child dies, a physician should be present to confirm that the child has died, to offer support to the family, and to answer any questions that the parents may have.

Informing Parents of a Child’s Death

If parents are not present when the child dies, it is ideal that news of the child’s death be conveyed by a physician and nurse whom the parents know and trust. Ideally, the parents should be told in a private room, where they can react without worrying about the presence of strangers. Buckman’s six-stage protocol for communicating difficult news describes communication, decision making, and building relations.⁹ This approach includes three steps to prepare for the discussion of important information (i.e., prepare for the discussion, establish what the patient and family know, and determine how information is to be handled), one step to deliver the information, and three steps to respond to the family’s reaction and planning (i.e., respond to emotions, establish goals and priorities, and establish a plan).⁵³

If the parents must be told of the child’s death over the telephone, they should be prepared to hear bad news before they are told that the child died. If possible, the physician or nurse should ensure that the parents are not alone at home, and that supportive friends or family are with the parents. If the child dies peacefully and in no apparent pain, it is important to share this information with the parents, which usually provides some comfort to the family.

Support of the Parents at the Time of Child’s Death

Sensitive and compassionate nursing care is needed to help the parents cope at the time of the child’s death.³⁵ Parents benefit from an opportunity to express their pain and sorrow in a private place and with the supportive presence of healthcare professionals. The responses of the parents will be determined by the family’s unique method of coping with the child’s death. Nursing staff should avoid labeling or attempting to suppress grief behavior, because this is unproductive and can hinder parental progress in the grief process.

Most healthcare professionals feel insecure about what to say to parents who are deeply distressed and grieving. Listening is often the most important form of support that the staff can provide. This can be difficult, especially when the parents express their painful feelings of loss. Each nurse must be in touch with his or her own feelings about the death of the child, because these feelings can interfere with therapeutic communication.

Staff members should avoid platitudes and should not tell parents “I know how you feel.” Even if a staff member has experienced the death of a child, it is impossible to know how each parent feels, so such remarks seem to minimize the parents’ pain and rejects its uniqueness. Religious pronouncements, such as “It was God’s will,” are usually inappropriate, because it is presumptuous to interpret the meaning of life or death for the family. One mother’s response to just this remark was quick: “That’s ridiculous—I can’t believe that God started this morning by deciding He wanted to take my baby!” Another phrase that many parents find unsettling is “At least…”—for example, “At least you had 3 years with her,” “At least she didn’t suffer,” or “At least you have three other healthy children.” Such remarks are generally not comforting.

Members of the healthcare team may cry with the parents when the child dies. Such emotions can be appropriate and will help the parents realize that their child’s death has touched many people. However, such emotional displays by a healthcare provider are inappropriate if the provider is unable to continue to function as a support to the parents, or if the parents end up comforting the provider. If the parents begin comforting the nurse, the nurse has abdicated the supportive role that the parents need. If a nurse feels overwhelmed by grief, that nurse should be excused to grieve privately, and another nurse should be available to support the parents.

Family members might express anger, rage, and other violent emotions when a child dies. It is difficult but important for the nurse and additional support staff to remain with the family members who are expressing strong emotions or who have lost control. Too often when the parents express strong emotion, they are suppressed verbally or quickly offered medication. Sedation should not be used without careful consideration of the purpose of the medication. Too often sedatives are prescribed to meet the needs of the hospital staff or uncomfortable family members and friends, rather than to meet the needs of the parents. As a bereaved parent, Schiff wrote an honest portrayal of what the death of her son felt like. “On that bright sunny March morning we were told that Robby had died. I screamed. A nurse, tears suddenly coming to her eyes, offered me a tranquilizer and I thought, how inane. Robby was dead and I was being given a pill to make it go away. Impossible.”⁴⁸

A number of bereaved parents, especially mothers, have described a lethargy or “fog” that enveloped them for days following sedation after the child’s death. Sedation may only postpone the painful reactions to a time when the parent is alone and unsupported.²⁶ In addition, it can separate the parent from decisions about the child’s funeral or burial, and the parent might later regret lack of participation in these plans or decisions.

At the time of the child’s death, most parents experience a period of acute distress. They may feel numb and have a sense of disbelief and denial. If the child dies suddenly, however, the response of the parents can be intensified and last for a longer period of time than if the parents were able to prepare for the child’s death. The nursing staff members who work with families during this time will play a crucial role in helping the family to cope with the immediate effects of the child’s death. Parents often remember in minute detail how they were told of the child’s death, who was present, and how the parents were treated by the nursing staff. Both positive and negative responses are recalled for months and years afterward.

Some parents will demonstrate a temporary lack of affect, including a sense of apparent calmness; parents may demonstrate evidence of relief, or even a period of euphoria. These parents might understand the child’s death at a cognitive level, but deny their deep and painful feelings. Such behavior can lead the healthcare team to the mistaken conclusion that the parents did not really care about the child, or that they are coping well.

Emotions such as anger, rage, frustration, and guilt can overwhelm the parents. Behavioral responses are varied and might include intense crying, wailing, hysteria, physical acting-out, or stoicism. These behavioral and emotional responses of parents are determined by the personality and cultural background of each parent, the relationship between the child and the parents, and the circumstances of the death.

In time, parents may share their feelings of helplessness and begin to explore the unanswerable question “Why?” It is important to avoid suppressing these questions or negating or dismissing them. The nurse should listen to the parents concerns and indicate that feelings of guilt are normal. In addition, the nurse should reinforce the positive aspects of the parents’ role.³⁶ The nurse can make observations about the child, such as “Everyone has mentioned that Jimmy was always smiling and happy—he certainly must have known he was loved.” When a parent is responsible in any way for the death of the child (e.g., death due to inflicted trauma), the staff members must be careful to avoid expressions of anger.

Parents need support and guidance related to the many decisions required after the child’s death (e.g., autopsy consent, informing friends and relatives, funeral and burial decisions). For many young couples, the death of their child is their first experience with the death of a loved one. Parents may need help informing siblings (see Support for Siblings).

The Final Visit

Parents and other family members should have an opportunity to see the child after death. This final visit with the child may enable the parents to say good-bye, to realize that the child has died, and to begin the grief process. Many parents who are unable or unwilling to see their child for a final visit have expressed regret at missing this visit; they may later find it difficult to believe that the child is actually dead.

A child died of head injuries when the go-cart he was riding was hit by a truck. Although his mother was present at the scene of the crash, the child’s body was covered, and the mother saw only the child’s shoes and the go-cart. For many weeks, the mother thought over and over that perhaps another child was killed, and her child was really unhurt. As a result she searched for him on the school bus and looked for him in crowds. The child’s father viewed the child’s body in the funeral home and reported fewer problems in believing that his son had died.

Parents should be asked separately about their desire to see the child after death, so that each parent can make an individual decision. It is not necessary for the parents to agree in their decision; the visit may be important for one parent, but repugnant to the other. Spouses should be helped to accept each other’s decision.

The healthcare team often wonders whether parents should be encouraged to view the body of a child who has died following massive injuries. There is no universal answer to this question, and the parents’ wishes should be considered in making the decision. If the parents do not see the child, however, their fantasies about the child’s mutilation can exceed reality. In addition, denial of the death and difficulty in accepting it can be prolonged when the parents do not see the child’s body and have that final contact.

Before the final visit, the room and the child’s body should be cleaned and prepared, to reduce the emotional impact of any injuries or treatments on the child’s appearance. This final bath also provides the nursing staff with an opportunity to say good-bye to the child and to begin to accept the child’s death. The nurse should be sensitive to the cultural mores of the family. Occasionally, a family member wishes to participate in this final preparation of the child’s body. All blood, betadine, or adhesive is removed, and lotion is often applied to the child’s skin. Clean sheets and covers should be placed on the bed, and the child should be dressed in clean pajamas or a gown. The child’s hair should be washed or brushed neatly. Incisions and wounds can be covered with clean, dry dressings.

If a postmortem examination will be performed, it may be necessary for invasive catheters and tubes to remain in place; if the tubes must remain, fresh tape should be used to cover any bloodstained or discolored tape. If a postmortem examination will not be performed and organ donation is not possible, equipment is typically removed. It can be comforting for the parents to see the child at peace, without intravenous lines or other invasive equipment. If the child died suddenly, the parents might need reassurance that everything possible was done to save the child. In this case, some equipment may remain in the room with the child.

If the child sustained severe, visible injuries, the child’s appearance should be described to the parents before their visit. Unless the child’s head and face are seriously injured, most injuries will be effectively covered by dressings and sheets. The nurse must determine whether the parents need privacy or support while seeing their child after death. If possible, the parents should be asked whether they would like to hold their child, because few parents are able to express this request.

The length of the final visit varies widely; some parents may wish to stay for an hour or more. Parents cope with loss in different ways, and some parents use this time to sort out many of their feelings and struggles.

One emergency department nurse reported helping a mother hold her infant daughter who had died of sudden infant death syndrome. The mother rocked the baby and sang to her for over 20 min. When the mother put her infant down, she was ready to phone her husband and help him with his grief.

Some parents may want to leave the hospital as soon as possible after the final paperwork is completed. If, however, the child has been hospitalized for a long time, the parents might be reluctant to leave the hospital because they feel that the hospital staff will best understand their grief. In addition, the hospital staff members share common recent memories of the child. Departure from the hospital for these parents may represent the final separation from their child.

Parents have reported that it is extremely traumatic to receive their child’s possessions, because this action symbolizes the full reality of the child’s death. Too often a plastic garbage sack is the most readily available container for the belongings, but use of such a sack is insensitive and possibly offensive to the parents. Special containers should be available for this purpose. If the child is an infant, the nurse should ask if the mother was nursing the infant. If so, the mother will require information about delactation (members of the local LaLeche League can be helpful).

Some children’s hospitals now give parents a handmade book that can include items such as a lock of hair, notes from nurses, hand and foot prints, and drawings of the child. This can be assembled before a child dies (when death is anticipated), so healthcare providers have opportunities to reflect and comment on their memories of the child, or it may be initiated at the time of death.

Support for Siblings

Parents sometimes unintentionally neglect the important needs of siblings during support of the dying child. When providing information to parents about support of the siblings, the nurse must consider the siblings’ age and maturity level and the circumstances of the child’s death.⁵³ If possible, parents should prepare siblings throughout the child’s critical illness or in the days preceding the death of the child.

Siblings of preschool age or older may be given the opportunity to come to the hospital when a child is critically ill, and to say good-bye and to be with the parents during the final visit after the child’s death. Toddlers also can be brought to visit with the dying child, particularly if the dying child wishes to see the toddler. Decisions regarding the presence of the sibling must be individualized, and consideration must be given to sleep and meal times for very young siblings (e.g., infants and toddlers). Even young siblings can provide comfort to the patient and the parents during this time.

Most siblings have indicated that it was helpful to have an open discussion with their parents about a child’s death. Frequently, siblings can feel responsible for the death of their brother or sister or can feel guilty for surviving. Parents should be aware of these potential responses of the siblings and should signal their willingness to discuss the child’s death frequently with the siblings. Siblings report that if the parents become emotional or avoid discussion of the child’s death, the siblings are made to feel that the subject should not be discussed. As a result, the sibling is forced to deal with grief and fear alone.

As a rule, if the sibling is old enough to know and love the child who has died, the sibling probably should be allowed to attend and even contribute in some way to the funeral. Siblings may want to select a flower arrangement or choose music for the service, or release a balloon following the service. When siblings are prevented from attending the funeral, they often have difficulty coping with the child’s death. They also may resent being separated from the rest of the family during this important time.

Books can be helpful in facilitating discussions with siblings about death.¹⁷ ^,18 Siblings can benefit from involvement in group therapy with other children who have experienced the death of a family member. The local chapter of Compassionate Friends or a hospital nurse or physician specialist, chaplain, or social worker may be aware of such groups.