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.

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

Family Challenges and Strengths

Modern healthcare technology has made it increasingly difficult to characterize and predict the course of dying. As a result, parents of children with serious healthcare problems often are uncertain about the child’s prognosis. Some parents will experience the relatively sudden and unexpected death of their child from acute illness, trauma, postoperative complications, or suicide. These parents are usually in a state of crisis because they were unable to prepare for the child’s death. They are most likely to demonstrate extreme shock and disbelief and extreme guilt. Often they will find it difficult to focus on the child’s grave condition while still trying to comprehend the events precipitating the child’s hospitalization. Friends and relatives can be supportive at this time but they may also create constant interruptions and distractions. The family requires frequent opportunities to speak with the hospital staff to help them assimilate the explanations provided, determine the best timing for visitors and to be with the child.

Parents of chronically ill children, on the other hand, have experienced the child’s long, intense, and often complicated illness. They have likely experienced many crises during the course of the child’s illness and may have prepared repeatedly for the child’s death. Such a continuous roller-coaster of emotional stress can compromise the family’s ability to cope effectively with the child’s ultimate deterioration and death. When a child has a chronic illness and has recovered from many near-death experiences, families and healthcare professionals may be reluctant to abandon curative efforts and allow natural death. Such reluctance can result in missed opportunities for resolution and spiritual healing.²⁷ Other family members and friends can provide valuable support, although occasionally such support people may refuse to believe that the child is really dying.

Communication and Planning

Nurses can assess the effects of the child’s illness and admission to the PCCU through a relatively short, directed nursing interview with the parents that focuses on them, their child, their history, experiences with the child’s illness, and their concerns and abilities for present and future care for both themselves and their child. Many times, the simple question of “What do you understand about how [child’s name] is doing?” will reveal a wealth of information that can be useful to improve communication and address anxieties. The nurse must also assess the cultural and religious differences that will influence the family’s ability to cope with death and loss. The nurse should be direct in discussing and planning to meet the family’s need to be involved in the child’s care. Once the nurse has gathered information about the family’s strengths, stresses and wishes, the healthcare team can plan to optimize support for the family. This information should be recorded and shared with other health team members so the family is not asked to answer the same questions repeatedly. Nursing reports, team meetings, family conferences, and rounds should be scheduled on a regular basis to communicate this information. Consistent caregivers, consistent updates, and frequent care conferences that include family members, and involved disciplines and specialties are key elements in supporting a family’s adjustment and coping.

Emotional Needs

Parents may respond to a life-limiting condition or predicted death of the child with anticipatory grief. Anticipatory grief is a coping mechanism that is sometimes used when the death of a loved one is perceived as inevitable; the grieving process may begin before the death occurs, in anticipation of that loss. Parents may begin to grieve over their child’s condition at the time of diagnosis or at any time the child experiences a serious setback or relapse. Anticipatory grief has been shown to facilitate the grieving process because it provides time to prepare for loss, the opportunity to complete unfinished business and resolve conflicts, and time to say good-bye.⁸

Parental anticipation of a child’s death is evident when the parents talk about the seriousness of the child’s illness and demonstrate awareness that recovery or stabilization is not likely. The parents often will begin to talk with the staff about the possibility of death, sharing memories of the child’s life and talking about what life will be like without the child. If the child’s death does not occur for several days, the parents may plan the child’s funeral. These discussions indicate that the parents may be accepting the reality of the child’s death and preparing emotionally for that death.

Grief responses of parents also can result in expressions of anger and guilt about the child’s impending death and the parents’ increasing sorrow. The nurse can assist parents with their anticipatory grief by listening to their expressed feelings of loss and encouraging parents to talk about what their child means to them. It may be helpful to encourage the family’s participation in the child’s care, with inclusion of siblings and extended family members as desired. Nurses can help family members stay connected with their child until death occurs.

In the case of the sudden death of the child, parents will not have time to prepare. For these parents, the healthcare team must rapidly yet compassionately help the parents to understand the gravity of the child’s condition to enable the parents to have even a brief time to anticipate the child’s death.

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.