Family-Centered End-of-Life Care

Ethical Considerations in End-of-Life Decision Making

A number of ethical concerns arise when parents and health care professionals are deciding on the best course of care for the dying child (Table 23-1). Many parents and health care providers are concerned that not offering treatment that would cause potential pain and suffering, but might extend life, would be considered euthanasia or assisted suicide. To eliminate such concerns, one must understand the various terms. Euthanasia involves an action carried out by a person other than the patient to end the life of the patient suffering from a terminal condition. This action is based on the belief that the act is “putting the person out of his or her misery.” This action has also been called mercy killing. Assisted suicide occurs when someone provides the patient with the means to end his or her life and the patient uses that means to do so. The important distinction between these two actions is who is actually acting to end the person’s life.

The American Nurses Association Code for Ethics (2005) does not support the active intent on the part of a nurse to end a person’s life. However, it does permit the nurse to provide interventions to relieve symptoms in the dying patient even when the interventions involve substantial risks of hastening death. When the prognosis for a patient is poor and death is the expected outcome, it is ethically acceptable to withhold or withdraw treatments that may cause pain and suffering and to provide interventions that promote comfort and quality of life. Therefore providing palliative care for patients is the ethically correct choice in such a circumstance.

Physician and Health Care Team Decision Making

Physicians often make decisions about care on the basis of the progression of the disease or amount of trauma, the availability of treatment options that would provide cure from disease or restoration of health, the impact of such treatments on the child, and the child’s overall prognosis (Davis and Eng, 1998). Often the main determinants prompting physicians to discuss end-of-life issues and options for children with critical illnesses are the child’s age, premorbid cognitive condition and functional status, pain or discomfort, probability of survival, and quality of life (Masri, Farrell, Lacroix, et al, 2000). When the physician discusses this information openly with families, a shared decision-making process can occur and decisions can be made regarding do-not-resuscitate (DNR) orders and care that is focused on the comfort of the child and family during the dying process (see Table 23-1). However, uncertainty of the child’s prognosis among health care providers is frequently a barrier to the provision of optimal palliative care (Davies, Sehring, Partridge, et al, 2008; Thompson, Knapp, Madden, et al, 2009). As a result, many families do not always receive the option of shifting the focus of treatment to the child’s comfort and quality of life when cure is unlikely (see Research Focus box).

The current approach by palliative care experts promotes the inclusion of palliative care along the continuum of care from diagnosis through treatment, not merely at the end of life (Field and Behrman, 2004; Himelstein, Hilden, Boldt, et al, 2004; Hubble, Ward-Smith, Christenson, et al, 2008), and sometimes after the child’s birth in the neonatal intensive care unit (Carter, 2004; De Lisle-Porter and Podruchny, 2009).

Family Decision Making

Rarely are families prepared to cope with the numerous decisions that must be made when a child is dying. When the death is unexpected, as in the case of an accident or trauma, the confusion of emergency services and possibly an intensive care setting presents challenges to parents as they are asked to make difficult choices. Determination of parental decision-making preferences, which may be active or independent, collaborative or shared between parents and provider, or passive or authoritarian, can help providers support parents (Higgins and Kayser-Jones, 1996; Hinds, Oakes, Furman, et al, 2001; Pyke-Grimm, Degner, Small, et al, 1999). If the child has experienced a life-threatening illness such as cancer or lived with a chronic illness that has now reached its terminal phase, parents are often unprepared for the reality of their child’s impending death (see Family-Centered Care box).

Earlier acknowledgment by both physicians and parents that children have no realistic chance for cure is associated with earlier implementation of DNR orders, less use of aggressive therapies, and greater provision of palliative care measures (Wolfe, Klar, Grier, et al, 2000). Additional factors found to influence parents’ decisions to limit or withdraw life-sustaining measures include parents’ prior end-of-life decision making for loved ones; observations of pain and suffering of their child and other hospitalized children; various emotions, including guilt and sorrow; and awareness of their child’s desire to forego life-sustaining measures (Sharman, Meert, and Sarnaik, 2005). The use of a pediatric advance directive for older minors may raise awareness of children’s wishes as part of the family decision-making process (Knapp, Huang, Madden, et al, 2009; Zinner, 2009) (see Research Focus box).

As the group of health professionals who are most involved with families, nurses are in an excellent position to ensure that families know the options available to them (Box 23-2). The nurse’s first responsibility is to explore the family’s wishes. This is best done with the physician, but at times nurses need to initiate the process. When discussing difficult issues, nurses are open to the child’s or family’s indirect comments that communicate uncertainty or concerns about the course of care. Nurses answer questions honestly, and if they do not know the answer, reassure the family that they will arrange for a discussion with the physician. It is important to address any fantasies or misunderstandings by seeking to clarify what the family has heard. Finally, it is important for the nurse to remain neutral and avoid giving personal opinions or experiences. The goal of communication is to facilitate the identification of the family’s wishes, based on their unique values and beliefs (Table 23-2).

Discussing Death with Children

Children need honest and accurate information about their illness, treatments, and prognosis. This information needs to be given in clear, simple language. In most situations this best occurs as a gradual process, characterized by increasingly open dialogue among parents, professionals, and the child (Hockley, 2000; Lee and Johann-Liang, 1999). Providing an atmosphere of open communication early in the course of an illness facilitates answering difficult questions as the child’s condition worsens. Providing appropriate literature about the disease, as well as about the experience of illness and possible death, is also helpful. Exactly how and when to involve children in decisions regarding care during their dying process and death is an individual matter. In general, the nurse should ask parents how they would like their child to be told of the prognosis and how they want to be included in their child’s care. Some parents may request that their child not be told that he or she is dying, even if the child asks. This often places health care providers in a difficult situation. Children, even at a young age, are perceptive. Despite not being told outright that they are dying, they realize that something is seriously wrong and that it involves them. Children deserve to be provided with the truth.

Often, helping parents understand that honesty and shared decision making between them and their child at this time are important for the emotional health of the child and family will encourage parents to allow discussion of dying with their child. The truth provides answers for future questions and fosters trust. It is difficult to encourage children to be honest, confide in others, and openly discuss their fears if parents refuse to do the same.

Honesty is certainly not the easiest solution; the truth may prompt children to ask other distressing questions. The question many parents and health professionals dread the most is, “Am I going to die?” When children have the answer to this question, the next question is, “When?” Children need answers that are straightforward, yet caring. In telling children that a cure is no longer possible, one must also leave room for hope. The hope is redirected from cure to quality of life and comfort.

Adults need to be prepared to assist children in understanding and coping with the emotions of dealing with their own death and to reassure children that it is all right to express their feelings as they choose. If given the opportunity to ask questions, children will tell others how much they want to know. Asking questions such as, “If the disease came back, would you want to know?” or “Do you want others to tell you everything, even if the news is not good?” helps children set the limits of how much truth they can accept and handle. Children need time to process feelings and information so that they can assimilate and ideally accept the inevitable fact of mortality. As the child and family move through the dying process, it is important for the family to share their beliefs regarding noncorporeal continuation and to reassure the child that he or she will not be alone at the time of death, and that the child will always be loved and remembered (Stevens, 1998).

Parents may require professional support and guidance in this process from a nurse, social worker, or child life specialist who has a good relationship with the child and family. Certain principles and guidelines can assist nurses and families in determining how to present facts about possible death and hope to a child in a way that fosters trust, enhances meaningful communication, and offers emotional support (Table 23-3 and Box 23-3). Professionals may also provide information to parents about their child(ren)’s general developmental understanding of and reactions to death and how to explain death in a developmentally appropriate manner and offer to assist parents when speaking with their terminally ill child and siblings.

The nurse can facilitate ongoing and open communication about death and dying through the use of various resources, including books (e.g., The Fall of Freddie the Leaf by Leo Buscaglia) and movies (e.g., The Velveteen Rabbit by Margery Williams) (Auvrignon, Leverger, and Lasfargues, 2008; Ethier, 2005). Play and art activities (e.g., music, drawing, painting, writing) offer a vehicle for expression of emotions that are often difficult for children to put into words (Rollins and Riccio, 2002).

Infants and Toddlers

Exactly how preverbal children view death is a mystery, since there is no way of reliably assessing their views of death. On the basis of their cognitive abilities, it is likely that they have no concept of death. The egocentricity of toddlers and their vague separation of fact and fantasy make it impossible for them to comprehend absence of life. Although they may repeat what initially sounds like a correct definition of death, such as, “Grandpa is dead; he went to heaven,” they may expect Grandpa’s return for several months before accommodating themselves to the absence. They can perceive events only in terms of their own frame of reference: living.

Preschool Children

Several characteristics of preschoolers’ cognitive and psychologic development affect their concept of death. Because they are egocentric at this age, they often have a tremendous sense of self-power and omnipotence. Therefore they believe that their thoughts are sufficient to cause events. The consequence of such magical thinking is feelings of guilt, shame, and punishment (Speece and Brent, 1996).

School-Age Children

Although school-age children have a better understanding of causality, less egocentricity, and an advanced perception of time, they may still associate misdeeds or bad thoughts with causing death and feel intense guilt and responsibility for the event. However, because of their higher cognitive abilities, they respond well to logical explanations and comprehend the figurative meaning of words better than children in younger age-groups. Although they are less likely to interpret explanations in a purely literal sense, they are still prone to self-referenced definitions. For this reason, it is important for adults to clarify the meanings of statements and to repeatedly ask the children what they think.

Adolescents

By the time most children reach adolescence, they have a mature understanding of death. As abstract thinking develops, there is more questioning of death and related topics, such as the religious meaning of afterlife. However, other developmental needs, especially formation of the child’s own identity, make this an exceptionally difficult time for young people to cope with the loss of a loved one or with their own impending death.

Hospital

Families may choose to remain in the hospital to receive care if the child’s illness or condition is unstable and home care is not an option, or the family is uncomfortable with providing care at home. If a family chooses to remain at the hospital for terminal care, make the setting as homelike as possible. Families can bring familiar items from the child’s room at home. In addition, develop a consistent and coordinated care plan for the child’s and family’s comfort.

Home Care

Some families may prefer to take their child home and receive services from a home care agency. Generally, these services entail periodic nursing visits, medications, equipment, and supplies. The primary physician continues to direct the child’s care (Ferrell and Coyle, 2002). Physicians and families often choose home care because of the traditional view that a child must be considered to have a life expectancy of fewer than 6 months to be referred to hospice care. Fortunately, a number of hospice organizations are expanding their services to children, basing admission on the presence of a life-limiting disease process for which cure is not possible, rather than on the sole criterion of a limited 6-month prognosis. Dussell, Kreicbergs, Hilden, and colleagues (2008) found parents whose children received home care had honest, open, end-of-life communication from the physician. Parents, were more likely to plan the location of their child’s death as the home and to report favorable outcomes. Unfortunately, only a limited number of hospitals and hospices in the United States provide palliative end-of-life care for children (Johnston, Nagel, Friedman, et al, 2008).

Hospice Care

Hospice care is another option for families who wish to take their child home during the final phases of an illness. Hospice is a community health care program that specializes in the care of dying patients by combining the hospice philosophy with the principles of palliative care. Hospice philosophy regards dying as a natural process and views the care of dying patients as including management of the physical, psychologic, social, and spiritual needs of the patient and family. A multidisciplinary group of professionals provide care in the patient’s home or an inpatient facility that follows the hospice philosophy. Hospice care for children was introduced in the 1970s (Martinson, 1993), and a number of community hospice organizations now accept children into their care (Faulkner and Armstrong-Dailey, 1997).* Collaboration between the child’s primary treatment team and the hospice care team is essential to the success of hospice care. Families may continue to see their primary care physicians as they choose.

The goal of hospice care is for children to live life to the fullest without pain, with choices and dignity, in the familiar environment of their homes, and with the support of their families. Hospice care is covered under state Medicaid programs and by most insurance plans. The service provides home nursing visits and visits from social workers, chaplains, and, in some cases, physicians. For children, the hospice concept has most commonly been implemented in the home, which benefits the family in a variety of ways. Children who are dying are allowed the opportunity to remain with those they love and with whom they feel secure. Many children who were thought to be in imminent danger of death have gone home and lived longer than expected. Siblings can feel more involved in the care and often have more positive perceptions of the death. In addition to the care and support provided through the dying process to the child and family, hospice is concerned with the family’s postdeath adjustment, and bereavement care may continue for a year or more.

Parental adaptation may be more favorable, as is shown by their perceptions of how the experience at home affected their marriage, social reorientation, religious beliefs, and views on the meaning of life and death.

If the home is chosen for hospice care, the child may or may not die in the home. One study revealed that 55% of children enrolled in hospice died in the home (Knapp, Shenkman, Marcu, et al, 2009). Reasons for final admission to a hospital vary but may be related to the parents’ or siblings’ wish to have the child die outside the home; exhaustion on the part of the caregivers; and physical problems such as sudden acute pain or respiratory distress.

Location and Participation in Child’s Care

The location of the child’s terminal care and death and the participation of parents in their child’s terminal care influences parental bereavement. Parents whose child died in the home rather than the hospital setting and who participated in caring for their child have consistently reported better bereavement outcomes (e.g., adaptive coping; family cohesion; less anxiety, stress, and depression) than parents whose children died in the hospital setting and/or who were not actively involved in their child’s care (Goodenough, Drew, Higgins, et al, 2004; Lauer, Mulhern, Schell, et al, 1989; Rando, 1983). The grief work of fathers in particular seems to be facilitated when their children die in the home setting. This finding may be related to the greater opportunity for working fathers to provide care to and spend time with their children at home than in the hospital setting. In contrast, a recent study suggests that parental opportunity to plan the location of their child’s death, whether death occurred in the home or in the hospital, may be a more relevant outcome variable than the child’s actual location of death (Dussell, Kreicbergs, Hilden, et al, 2008).

Pain and Symptom Management

When the pain and symptoms experienced by dying children are being managed, it is important to clearly communicate the intent of any interventions proposed. For example, many children with progressive cancer may be given “palliative chemotherapy” or “palliative radiotherapy.” The health care team and family must understand that the goal of these treatments is either to increase comfort by slowing the progression of an incurable tumor (palliative chemotherapy) or to reduce swelling or pressure from a tumor that is causing pain (palliative radiation). The family should understand that these treatments will not ultimately change the outcome of death for the child. This understanding reduces the chance of confusion among family members and health care providers regarding the focus of care and its aim toward palliation. In addition, providers consider the benefit versus risk of any suggested interventions in relation to the child’s current quality of life.

The child’s and family’s views of quality of life, religious and cultural values, and level of acceptance of the terminal prognosis will shape the types of interventions considered as symptoms occur. One family may choose to continue blood-product support if the child is otherwise comfortable and active but has fatigue and shortness of breath related to anemia. Another child and family may forgo transfusions to avoid having to return to the hospital or clinic. The child and family should be aware of potential side effects of any proposed treatments and consequences of choosing not to intervene and are provided with options that are consistent with their values and goals for the child’s comfort. Health care practitioners must respect each individual family’s choice regarding their child’s care.

Nurses should use a holistic approach to symptom management that includes pharmacologic and nonpharmacologic interventions when possible to optimize treatment. For instance, in addition to giving lorazepam for anxiety, instruct the child and family in nonpharmacologic techniques such as distraction or relaxation breathing and encourage them to explore and communicate fears to further alleviate feelings of anxiety.

Carefully consider the route of medication administration used for pain and symptom management. Generally the nurse should use the least traumatic method of administration. Children may present a special challenge for administration of medication depending on their age, level of cooperation, and temperament. If taking medicine becomes a struggle, children and parents may underreport the severity of pain and symptoms to avoid the trauma of administering the medication. Most medications can be administered orally, sublingually, transdermally, or by intravenous or subcutaneous infusion. Compounding pharmacists can be helpful in making medications in a form that is palatable or can be delivered with less distress.

Give pain control for children in the terminal stages of illness or injury the highest priority. Despite ongoing efforts to educate physicians and nurses on pain management strategies in children, studies have reported that children continue to be undermedicated for their pain (Wolfe, Grier, Klar, et al, 2000; Wolfe, Hammel, Edwards, et al, 2008). Nearly all children experience some amount of pain in the terminal phase of their illness. The current standard for treating children’s pain is according to the World Health Organization’s analgesic and side effect stepladder (World Health Organization, 1998b), which takes into account the intolerable side effects of opioids (Riley, Ross, Gretton, et al, 2007) (Fig. 23-2). This approach promotes individualizing the pain interventions to children’s level of reported pain. Children’s pain is assessed frequently, and medications adjusted as necessary. Pain medications are given on a regular schedule, and extra doses for breakthrough pain are available to maintain comfort. Opioid drugs such as morphine are given for severe pain, and the dosage is increased as necessary to maintain optimum pain relief. Techniques such as distraction, relaxation techniques, and guided imagery (Lambert, 1999) are combined with drug therapy to provide the child and family with strategies to control pain (Russell and Smart, 2007). (See Chapter 7 for further discussion of pain assessment and management strategies.)

Occasionally children require very high doses of opioids to control pain. This may occur for several reasons. The child on long-term opioid pain management can become tolerant of the drug, so more drug must be given to maintain the same level of pain relief. This is not to be confused with addiction, which is a psychologic dependence on the side effects of opioids. Addiction is not a factor in managing terminal pain in children. Other reasons for increasing dosages of opioids include progression of disease and other physiologic causes of pain. It is important to understand that there is no maximum dosage that can be given to control pain. However, nurses often express concern that administering dosages of opioids that exceed those with which they are familiar will hasten the child’s death. The principle of double effect addresses such concerns (Box 23-5). It provides an ethical standard that supports the use of interventions that have the intention of relieving pain and suffering even though there is a foreseeable possibility that death may be hastened (Siever, 1994). In cases in which the child is terminally ill and in severe pain, using large doses of opioids and sedatives to manage pain is justified when no other treatment options are available that would relieve the pain but make the possibility of death less likely (Fleischman, 1998). (See Chapter 7 for an extensive discussion of pain assessment and management.)

In addition to pain, children experience a variety of other symptoms during their terminal course, either as a result of their disease process or as a side effect of medicines used to maintain their comfort (Box 23-6). The underlying disease and previous treatment history will contribute to the types and severity of symptoms the individual child experiences during the dying process. Nurses caring for children who are receiving palliative care for a terminal condition or illness assess frequently for any symptoms that are causing the child physical distress. Assessment includes information regarding the symptom’s onset, severity, duration, and effect on the child’s quality of life.

These symptoms are consistently managed with appropriate medications or treatments and interventions such as repositioning, relaxation, massage, and other measures to maintain the child’s comfort and quality of life. (For further information on pain and symptom management for children, see the Cancer Pain Management in Children [www.childcancerpain.org] and End-of-Life Care for Children [www.childendoflifecare.org] websites.)

Educational Needs

Family caregivers need comprehensive education about various aspects of the care that they are providing to their child. This preparation can ease feelings of helplessness and anxiety and provide a sense of competence as they move from caring for an ill child to caring for a dying child. This education begins early in the transition from curative to palliative care. Table 23-4 provides some common areas of educational needs of family caregivers and suggestions on how nurses can assist families in meeting these needs. Education about physical care is best provided as the need arises. Instructing parents too early in the signs and symptoms of respiratory distress or the method of stopping a nosebleed can increase the parents’ anxiety.

Emotional Support

Members of the family can be overwhelmed by powerful emotions that can threaten their ability to cope. Anger, guilt, anxiety, and helplessness are normal feelings that many parents experience and often project onto other members of the family or health care team. Nurses assisting these families cannot prevent parents from feeling this way; however, they can assist the family in recognizing the normalcy of these emotions and in identifying ways in which to cope. Encourage families to seek assistance outside of the family circle and to arrange for periods of respite care when available (see Cultural Competence box).

Spiritual and Religious Support

Meeting the spiritual or religious needs of the child and family is as important as teaching caregiving techniques, and the degree to which these needs are met successfully may determine how well the child and family cope with the dying process. It is important for nurses working with dying children and their families to assess the family’s spiritual or religious needs (Heilferty, 2004; National Cancer Institute, 2009), model comfort when discussing the family’s spiritual issues, facilitate the family’s spiritual or religious rituals (e.g., prayer), refrain from disclosing their own beliefs, inform family members of a hospital’s multifaith chapel or quiet area for prayer, note signs of spiritual distress (e.g., “Why my child?”; “Why aren’t my prayers being answered?”), inform family members of the chaplain role, and offer chaplaincy referral (Robinson, Thiel, Backus, et al, 2006). Referral to a hospital chaplain are indicated when a family member requests prayer, sacraments, ritual, devotional materials, or a faith perspective during their process of decision-making; when a family member expresses spiritual or religious objections to the child’s treatment; when a provider notes signs of spiritual distress by a family member; and when a provider observes spiritual or religious solicitation (Robinson, Thiel, Backus, et al, 2006).

Sibling Support

It is important to consider the needs of siblings experiencing the death of a brother or sister (Fig. 23-3). As mentioned earlier, the developmental stage and level of maturity of the siblings will have a strong influence on the feelings and behaviors exhibited as their brother’s or sister’s illness progresses and their care intensifies. Siblings may feel isolated and displaced during the time that a brother or sister is dying (Nolbris and Hellstrom, 2005). Parents devote the majority of their time to the care and comfort of the dying child, which causes siblings to feel left out (Nolbris and Hellstrom, 2005). Siblings may become resentful of their sick brother or sister and begin to feel guilty or ashamed about such feelings (Murray, 1999; Nolbris and Hellstrom, 2005). Nurses can assist the family by helping the parents identify ways to involve the siblings in the caring process and provide honest, developmentally appropriate information to siblings (Giovanola, 2005; Nolbris and Hellstrom, 2005). Encourage parents to spend time with the other children during which the focus is on them. Nurses can assist the parents by helping them identify a trusted friend or family member who can sit with the ill child for a short time.

Caregiver Support

As the care of the dying child becomes the primary focus of the parent, personal and household needs often take on secondary significance. These tasks, however, can become burdensome and increase the family’s stress if not attended to. Nurses can help the family identify ways for friends, community service organizations, and extended family members to assist with tasks such as household chores, shopping, meal preparation, and laundry.

Physical Changes

Physical changes occur more often in children dying of prolonged illness or disability and can vary widely among children. Generally, as the child progresses through the dying process, there is an overall decline in the child’s physical condition. This decline may be interspersed with brief spurts of energy or periods of alertness and can cause parents to become exhausted and overwhelmed in “waiting for the inevitable.” Often parents ask “how long” their child has to live. Initially this question may represent the parents’ attempt to determine what special activities or events the family should try to accomplish. As the dying process progresses, this question may reveal a wish to know how long they and their child will have to endure the dying process.

As the child moves closer to his or her actual death, some general physical changes occur (Box 23-7). Initially the child may begin to sleep more. Appetite decreases, and the child begins to take only small bites of favorite foods or sips of fluids. As the child begins to eat and drink less, urinary frequency declines and the urine becomes more concentrated. In the final few days before death, the child most likely becomes less responsive. Breathing may become slow and shallow, with periodic deep sighs. Urinary output may decrease or stop. As the child nears the final hours before death, breathing becomes more irregular, deep, and gasping, with long periods of apnea (Cheyne-Stokes respirations). The skin may have a pale, grayish blue color and may be cool to the touch. The child’s eyes may be slightly open, with a fixed gaze. It is important to prepare the family for these changes and to provide them with caregiving activities that promote a loving presence in the child’s care (Box 23-8). Reassure parents that this is a normal process and that the child is not suffering.

Emotional Changes

As children approach death, they may begin to recall events that were important with their families. They may want to draw pictures or leave messages for important friends and family. Often children begin to reassure their parents and other significant people that they are not afraid and are ready to die.

During the final few days to hours of death, children may experience visions of “angels” or people and talk with them (Ethier, 2005). They may mention that they are not afraid and that someone is waiting for them. Often these visions are of family members or friends who have preceded them in death. In most instances these visions provide a comforting presence and reassurance for the child and family. Not all children will express these types of experiences.

As the child’s death approaches, the family may begin the “death vigil,” which is a natural phenomenon in which family and friends gather at the bedside. Rarely is the child left alone for any length of time. During this time families may read favorite books, recite prayers, light candles, or play music that is special to the child. Spiritual, religious, or family rituals surrounding the time of death are important, and nurses involved in the care of the family at this time are sensitive to such needs (Heilferty, 2004; National Cancer Institute, 2009) (see Nursing Care Plan).

Community-Based Follow-Up

A community health or visiting nurse referral may be helpful after a sudden, unexpected pediatric death. Some families have reported that this was a missing piece in their care (Dent, Condon, Blair, et al, 1996). During several home visits the nurse can answer the families’ questions, provide information about the grief process, assess and support coping mechanisms, and give appropriate referrals to support groups (Box 23-10) (Buckalow and Esposito, 1995).

Families who experience a child’s sudden death may have recurrent memories of both the child and the death experience and may long grieve over missed opportunities. Support and resource groups that may be useful to families include the First Candle (previously SIDS Alliance),* National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center,† American SIDS Institute,‡ Mothers Against Drunk Driving,§ and National Organization of Parents of Murdered Children, Inc.

Parental Grief

The grief of parents after the death of a child has been found to be a more intense, complex, long-lasting, and fluctuating grief experience than that of other bereaved individuals (Rando, 1986). Although parents experience the primary loss of their child, many secondary losses are felt, such as the loss of part of one’s self, hopes and dreams for the child’s future, the family unit, prior social and emotional community supports, and often spousal support. It is common for parents of the same child to experience different grief reactions.

Studies involving bereaved parents have shown that grieving does not end by the severing of the bond with the deceased child, but rather involves a continuing bond between the parent and the dead child (Klass, 2001). Parental resolution of grief is a process of integrating the deceased child into daily life in which the pain of losing a child is never completely gone but lessens. There are occasions of brief relapse, but not to the degree experienced when the loss initially occurred. Thus parental grief work is never completed and is a timeless process of accepting the new reality of being without a child, as it changes over time (Davies, 2004). Although parents are expected to grieve the loss of their child, parental grief is often minimized, which leaves parents to work through their grief in isolation and silence (Rando, 1993).

Parental grief can be stressful on a marriage. As parents become lost in their grief, they are unable to perform many of their roles within the family. For instance, a mother who is generally the nurturing parent now finds herself immobilized by grief and unable to nurture and support her husband and surviving children. Her husband functions in the family as the provider and protector; however, he could not “fix” his dying child. He may now feel the need to “fix” the other members of his family. In addition, he may not have the resources to express his grief, which leads him to postpone his grief by keeping busy at work or around the house. This “tabling” of emotion can lead to outbursts of anger and emotional distancing. Parents often need guidance in understanding each other’s needs during their grief process. Not only may the parents be unavailable to each other, they may also be so lost in their own grief that they cannot easily respond to their children’s grief.

Sibling Grief

Each child grieves in his or her own way and on his or her own timeline. Children, even adolescents, grieve differently from adults. Adults and children differ more widely in their reactions to death than in their reactions to any other phenomenon. Children of all ages grieve the loss of a loved one, and their understanding and reactions to death depends on their age and developmental level (Table 23-5). Children often grieve for a longer duration than adults, revisiting their grief as they grow and develop new understandings of death. However, they do not grieve 100% of the time. They grieve in spurts and can be emotional and sad one moment and then, just as quickly, off and playing.

Children express their grief through play and behavior. Children can be exquisitely attuned to their parents’ grief and try to protect them by not asking questions and avoiding upsetting them. This can set the stage for the sibling to try to become the “perfect child.” Children exhibit many of the grief reactions of adults, including physical sensations and illnesses, anger, guilt, sadness, loneliness, withdrawal, acting out, regression, sleep disturbances, isolation, and search for meaning. Again, nurses are attentive for signs that siblings are struggling with their grief and provide guidance to parents when possible (see Critical Thinking Exercise).

Shock and Disbelief

Shock, numbness, and disbelief are seen during the immediate phase of grief. As one parent described, “We were as prepared for our son’s death as anyone could be, but it was a shock when in a moment his life was finished. I just can’t get over the rapidity with which life ends.” This temporary numbness protects the survivors from the overwhelming pain associated with grief. Decisions are often made automatically, and only certain details are remembered.

Expression of Grief

When the numbness fades, a period of intense grief begins, characterized by loneliness and yearning for the deceased. During this stage many of the signs of acute grief are evident, and physical complaints such as appetite changes and an inability to sleep are common. There is a tendency to review the events of the deceased’s life and to evaluate the relationship with the loved one. Feelings of guilt and anger are common at this time.

Disorganization and Despair

During the stage of disorganization and despair the pain of the loss is replaced primarily by emptiness, apathy, and deep depression. There is a feeling that life has no meaning and that the pain will never end. This is particularly relevant for parents. For example, mothers often comment that they feel they have suffered a double loss—loss of their child and loss of the mothering role. Feelings of estrangement from other loved ones are common, and social isolation may foster the depression.

Reorganization

Reorganization refers to recovery from the loss. During this gradual process the survivors again find meaning in living, readjust to life without the deceased, develop new or renewed relationships, and learn to live with the memory of the deceased with much less pain. This never means that the loved one is forgotten and the pain is gone. There always remains a deep ache that is never totally replaced with happiness and one that returns more intensely, for example, on holidays or anniversaries.

Denial

When children are admitted to a pediatric unit with a suspected diagnosis of a serious illness, the initial response from some nurses is shock and denial. However, their behavioral reaction may be withdrawal from the child and family. They choose the “cure” philosophy over the “care” philosophy as a method of distancing themselves from the implications of emotional involvement. Because of their own dependency on denial, some nurses may inappropriately support denial in parents. There are several methods of conveying this message, such as emphasizing only optimistic “survival statistics,” negating the seriousness of the illness, focusing on “cheering up” the family, and engaging in casual conversation to avoid meaningful dialogue. Although this increases nurses’ comfort in caring for the dying child, it does little to help family members progress beyond denial and begin anticipatory grieving.

Some denial is as important for nurses as it is for the child or parents. It protects nurses from the overwhelming reality of death. It would be extremely difficult to participate in the treatment plan without some expectation of a cure. Denial is also necessary to prevent feelings of failure. In general, nursing and medical goals emphasize curing illness and saving lives, not allowing patients to die. However, denial loses its beneficial functions when nurses refuse to admit the failure of treatment efforts and insist on adhering to the “curing” regimen, regardless of its effectiveness or value. Failure of treatment is not to be equated with personal failure or failure to provide optimum nursing care.

Anger and Depression

Some nurses may be angry for having been assigned to the “leukemia case,” for example, because the very exposure to potential failure in a fatal illness is extremely threatening. Others may feel angry for having to subject the child to painful procedures or for being unable to relieve the child’s physical and emotional suffering. Instead of anger, some nurses may feel depression for any of these reasons.

Without understanding the reason for the emotion, however, nurses may project the anger onto others, particularly family members. They may be unable to tolerate the child’s uncooperative behavior or the parents’ continual requests for information. Anger fuels more anger, and parents react with hostility and think the members of the nursing staff are rejecting them. A vicious circle of resentment, mistrust, and frustration may result.

Depression also has adverse effects on the therapeutic relationship, since nurses may withdraw from the child and parents as a method of controlling their sadness. Unaware of the reason for the avoidance, family members interpret it as evidence of inadequate care. This reaction also fosters a nonsupportive cycle of avoidance, withdrawal, resentment, and frustration. However, the messages are usually more covert than when the nurses’ reaction is anger and may prevent a climax that could result in a solution to the problem.

Guilt

Nurses who feel unable to deal with fatal illness in a child often experience guilt. Nurses who become angry or depressed when caring for a dying child often reveal that they are uncomfortable with this response but are unable to choose a more direct and constructive approach. They express guilt for having been intolerant of the child’s or parents’ behaviors and, even more important, realize the missed opportunity to provide these individuals with professional support and guidance.

The one important difference between a dying child and an ill child is that there may be no second chance to meet the needs of the dying child. This finality is difficult to comprehend but can lead to a better understanding of one’s own responses to dying. For example, when guilt makes an individual uncomfortable enough to seek alternate behavior patterns, there is an opportunity for change, provided the individual is given some assistance and support.

Ambivalence

One of the most universal reactions of nurses is ambivalence in their feelings toward a dying child. There is the fluctuating adherence to hope for a cure and fear of a relapse. Sometimes the motivations for both are more for personal needs. For example, the nurse may hope that the child recovers to avoid readmissions. Or the nurse may wish for a remission so that discharge is ensured. Such thoughts are certainly understandable in light of the emotional toll of nursing a dying child.

Ambivalence may be demonstrated in a particular type of bargaining. Rather than bargaining for extra time, nurses may hope that their colleagues are assigned to the patient or that a death may occur on a shift other than their own. Bargaining for a temporary absence from the dying child is a healthy response, because it demonstrates nurses’ awareness of their own emotional limits. Nurses who are unable to recognize their personal emotional limits are in danger of seeking to have the professional relationship meet their needs for gratification, achievement, and fulfillment. This results in the loss of an objective evaluation of therapeutic interventions and the increased potential for subjective overinvolvement with the family.

Self-Awareness

The initial step in effectively caring for a dying child is making a deliberate choice to become involved. Many nurses react negatively to the word involvement because they believe that professionals must remain uninvolved to maintain objectivity. Involvement does not displace objectivity. On the contrary, allowing oneself to feel with the other person expands one’s ability to comprehend the meaning and depth of their emotion (see Family-Centered Care box). Ideally the nurse achieves detached concern, which allows sensitive, understanding care because the nurse is sufficiently detached to make objective, rational decisions.

Knowledge and Practice

Intervening therapeutically with terminally ill children and their families demands more than self-awareness. It also requires that nursing practice be based on sound theoretic formulations and empirical observations that provide a general, concise analysis of the typical reactions of families.

Involvement does carry the potential risk of clouding objectivity, but awareness of one’s reactions and investments in the care of a dying child minimizes this hazard. Developing awareness requires the willingness to investigate one’s motivations for choosing to work in such an area, to understand the stresses inherent in the role, to review one’s resolution of past losses, and to contemplate one’s own fears of death. Often nurses who have a cold, impersonal reaction to dying patients come to realize that their reaction stems from previous unresolved conflicts or losses. Once they are able to talk about such experiences, they are usually able to gain insight into their behavior and begin to develop alternative methods of reacting.

Nurses also must explore ethical issues surrounding the definition of death, the use of extraordinary and lifesaving measures versus allowing the child to die, and patients’ rights to know and choose their own destinies. Once nurses have soundly formulated the principles by which to practice, they need opportunities for decision making. When a team approach is used, nurses can be valuable members of the group if their own values have been clarified and they have critically assessed the family’s responses. (See Ethical Decision Making, Chapter 1.)

Support Systems

Support systems are essential to continued functioning in a high-stress environment. They allow nurses to regenerate energies by sharing feelings and concerns with others. Dealing with feelings about death in isolation can lead to repressed feelings such as denial, anger, and depression. These feelings may be manifested in poor interactions among staff, inappropriate or nonsupportive interactions with families, an inability to evaluate care plans or advocate for families, and a need to control (Hammer, Nichols, and Armstrong, 1992). Support is an important catalyst for processing feelings about death.

Social supports may be personal family members such as parents or spouses, extended relatives, and friends. Professional supports include colleagues, consultants, teachers, and supervisors. Peers may be sources of technical and practical advice. Because the death of a patient is more stressful for a less-experienced nurse, a mentoring relationship between a senior nurse and the less-experienced nurse may provide support and role modeling and assist in the development of effective coping strategies (Gardner, 1999). Forums for staff support and opportunities for debriefing after deaths have been shown to facilitate adaptive coping responses and enhance provider-patient relationship (Contro, Larson, Scofield, et al, 2004).

Other Strategies

Any number of other strategies may be used to reduce stress. These include maintaining good general health practices, especially regular exercise, and participating in diversionary activities that are of personal interest beyond the workplace. Distancing techniques are also effective, such as leaving work at work, informing other staff not to contact one on one’s days off, periodically assuming less demanding assignments, and taking time off when needed. Mindfulness-based meditation may be another effective strategy to decrease stress and regain a sense of control among nurses experiencing compassion fatigue and burnout (Davies, 2008).

A final technique is to focus on the positive aspects of the caregiving role. Despite the difficult times in caring for these children and families, many rewarding experiences must be remembered. Dedicated efforts reap numerous rewards, and these must not be forgotten or minimized. Reflection on positive feedback from appreciative families can revitalize self-esteem and job satisfaction.

Some nurses find shared remembrance rituals useful in resolving grief. Similarly, attending the funeral services can be a supportive act for both the family and the nurse and in no way detracts from the professionalism of care. For the family it conveys a sense of worth and caring by the nurse. For the nurse it can provide a sense of closure with the family and facilitate the grief process (Box 23-11).

• A family-centered approach to care of the child and family facing life-threatening illness or death respects the central role of the family and emphasizes communication, collaboration, and cultural sensitivity.

• There are common phases of family reactions to a life-threatening illness such as cancer. These phases correspond to the progression of the disease and the status of treatment.

• Special decisions at the time of dying and death may involve hospital or hospice care, the child’s right to die and DNR orders, viewing of the body, organ and tissue donation, autopsy, and siblings’ attendance at the funeral.

• Special needs of the family facing the unexpected death of a child include support while awaiting news of the child’s status; a sensitive pronouncement of death; acknowledgment of feelings of denial, guilt, and anger; an opportunity to view the body; closure; and referrals for support.

• To counsel families and children regarding death, nurses need to understand children’s perceptions of death, the fears in each age-group, and personal meanings of death and bereavement during developmental stages.

• Toddlers’ egocentricity and vague separation of fact from fantasy make death incomprehensible; they may still refer to a dead person as though the person exists.

• Because of their sense of precausality and self-power, preschoolers may believe that their thoughts actually cause another person’s death.

• With their reasoning power and fear of the unknown, school-age children may feel intense guilt and responsibility for someone’s death.

• Adolescents have difficulty accepting death because of their preoccupation with developing a sense of identity.

• Nurses may offer the following assistance in education about death: counseling parents about children’s age-specific understanding of death, encouraging parents to help children become familiar and comfortable with loss, taking part in organized death education in schools, and serving as a resource to answer families’ and children’s questions.

• What children are told about their serious illness is the family’s decision and can be based on several general principles regarding developmental age, previous knowledge, and honesty.

• Siblings have special needs, including the need for information, reassurance about their own health status, assurance that they are not responsible for the illness or death, and support for their own grieving process.

• Acute grief is a syndrome with psychologic and somatic symptomatology that may appear after the crisis or may be delayed, exaggerated, or apparently absent. “Distorted” reactions may represent one aspect of the syndrome and can be transformed into normal grief work.

• Mourning, or grief work, consists of four phases that do not necessarily proceed in sequence and may recur at any time: shock and disbelief, expression of grief, disorganization and despair, and reorganization.

• Formal bereavement programs may assist families in coping with the loss of a child and in the process of grief resolution.

• In dealing with stress related to the dying patient, the nurse can cope successfully through self-awareness, knowledge and practice, available support systems, maintenance of general good health, and focus on the positive rewards of involvement with dying children and their families.

Preschool Siblings and Death