When Children are Dying

By Laurie Lewis; Martin Brecher, MD, Gregory H. Reaman, MD, and O. J. Sahler, MD

Almost 60,000 Americans younger than age 19, about half of them infants, die each year. The leading causes of infant mortality are congenital anomalies, prematurity, sudden infant death syndrome, and respiratory distress syndrome. Although congenital anomalies continue to exact a large toll among preschoolers, accidents are the leading cause of death among children and adolescents age 1 to 19 years, accounting for 43% of all fatalities. Cancer is the most common fatal illness before adulthood.¹

Specialists are likely to take over the care of a dying child. Newborns are cared for in the neonatal intensive care unit. A youngster with cancer is treated by an oncologist, often at a tertiary care center. An accident victim is brought to a hospital, where emergency physicians and perhaps surgeons will attempt to save the child's life.

Although you may not take a major part in medical treatment, you still have important roles to play. Your responsibility is to provide support. While your doctors may be focusing primarily on the dying child, you should be caring for the entire family—parents and siblings as well as the patient.

The impending death of a child affects every member of the family. Parents may be overwhelmed by the decisions they must make about the child's terminal care. Parents, siblings, and the dying child may be confused by an array of emotions, including sadness, anger, and guilt. Children especially may have difficulty expressing their feelings. By giving family members the information they need, an opportunity to talk about their feelings, and suggestions for making the last days count, the pediatrician can help everyone concerned cope somewhat better with the tragedy of a child's death.

Children's concepts of death

To provide more effective care, parents need to understand children's concepts of dying. Children's understanding of death—their own or someone else's—is related to their developmental stage²:

Until about age 3. Very young children are unable to distinguish death from a temporary separation. A toddler may think that an older brother who has died will return soon, as he does at the end of a school day.

Age 3 to 6. Preschoolers have not yet developed logical thought processes and may not realize that being alive and being dead are mutually exclusive. A 5-year-old who is told she is dying may say something like, "Can we go to the zoo when I'm dead?" Before about age 6, children think of death as temporary and reversible. Because they are egocentric and prone to magical thinking, they may blame their thoughts or actions for a sibling's death. A child this age might fret because, "I said I didn't want a brother any more, and now he's dead."

Age 6 to 12. Children of this age recognize that death is irreversible and that everyone must die. As they approach adolescence, they can envision their own deaths. They may feel sad that they will never see people they care about or participate in activities they enjoy. Because concrete experience is the basis for their thinking, siblings in this age group may want to participate in activities with a dying child and attend the funeral and burial.

Age 12 and older. By early adolescence, children develop the ability to reason abstractly, and have an adult's understanding of death and dying. They recognize that death affects other people, and they will mourn the separation by death from those they love. Dying teenagers often become upset at their dependence on caregivers and family at a time when independence and peers are of paramount importance. They often also fear symptoms of pain and suffering more than actual death, and they need ongoing reassurance that their comfort will be attended to.

Involving the child in treatment decisions

The medical community today advocates full disclosure to patients about their medical condition and their participation in medical decision making. This principle applies to children as well as to adults. Yet this is sometimes difficult to put into practice when a child has a terminal illness.

Discussion of treatment and prognosis is difficult in part because young children may not understand the permanence and irreversibility of death. In addition, some ethnic groups avoid mentioning death, especially to children (see "Cultural differences in dealing with death"). Parents from cultures that do not have taboos against speaking about death may nonetheless feel they are protecting their child by not explaining that the illness is fatal.

While respecting their cultural background, parents are encouraged to tell the child about the illness and its likely outcome. When they keep it secret, their behavior may speak louder than their words. Children often guess the truth. They may respond with anger at not being informed, or they may become more fearful because they recognize their parents' unspoken fear. Many children try to protect their parents by pretending that they do not know they are dying, and the shrouds of secrecy individually wrapped around both parents and child keep them from sharing at a time when closeness is what they all want most.

Once they realize they are dying, older children and teenagers may develop strong feelings about their treatment. The initial desire to do everything possible to conquer an illness may evolve, after repeated unpleasant and unsuccessful treatments, to a desire to withhold further procedures. The medical team needs to evaluate whether the child is simply balking at uncomfortable treatment that might be helpful. If the condition is truly terminal and additional treatment will only prolong suffering, the patient's wishes should be respected.

Pain management

Pain is one of the biggest fears of dying patients, and children are no exception. Yet children often experience considerable pain in their final months of life. A recent study found that 89% of parents of children and teenagers who died of cancer felt that the patient suffered greatly at the end. Only 27% of parents felt that treatment of pain was successful. Children whose parents reported lack of physician involvement were especially likely to suffer from pain in the last month of life.⁴

Pain management in children is inadequate for several reasons. Children may not be able to evaluate the extent of their pain and the degree of relief from medication. Concern about overdosing and fear of addiction, which should not be considerations with dying patients, often lead to underdosing. Families may be reluctant to lose precious time with the child because of a drug-induced decrease in consciousness.

 Hearing a story or listening to favorite music may temporarily distract a sick child from pain. When these complementary methods are used, the dosage of narcotics can often be reduced, and the adverse effects and dulled sensorium resulting from the medication are attenuated.

Maintaining normalcy in the family

Children, including dying youngsters, want to enjoy life. Quality of life for a dying child means being able to engage in normal childhood activities. As long as the child is physically able, the remaining time can be spent as it was before death loomed on the horizon, perhaps with modifications to create pleasant memories for the surviving family members.

Going to school contributes to the normalcy of life. If the child is too weak to attend on a regular basis, half-day attendance or computer hookups between home and classroom will allow the dying child to feel connected to peers. A bedridden child may appreciate visits from friends.

Most of the child's interactions, however, will be within the family—with parents, grandparents, and siblings. How the family manages during the terminal phase of illness can affect how they fare after the child's death. When a family can feel proud of the love and care they showered on a dying child and the special wishes they were able to fulfill, their pain is mitigated and regrets are minimized.

Attending to the needs of siblings

When parents' attention is focused on one child, the brothers and sisters are likely to feel left out. Sibling rivalry may intensify, and conflicting emotions may confuse the healthy youngsters in the family. These children crave the caring of a trusted adult, but their parents may be unavailable, especially if the ill child is in a distant tertiary-care facility. Children who have not yet bonded with a new baby who is dying may have difficulty understanding why their parents are spending so much time away and why they are worrying over an invisible member of the family.

A pediatrician can provide valuable assistance for the siblings. Find a reason to see them, such as a well-child checkup or a vaccination.

Many children are unable to express their feelings aloud in words. Encourage reticent youngsters to find other means to air their concerns, such as by drawing or keeping a journal (see "Coping creatively"). Children may be able to open up and share their pain in a support group for youngsters whose brother or sister has a terminal illness or has died. These groups and individual support are provided by hospices, to which families can be referred by their primary care physician or pediatrician.

Even though the siblings may be tired of the medicalization of family life, they can benefit by becoming involved in the medical process. Taking them to see the sick child in the hospital removes some of the mystery of the place where their parents and brother or sister keep going. When the child is home, siblings can participate in the care, for example, by bringing drinks to the bedside or reading stories to the child. These simple acts will become positive memories that the survivor may come to cherish in later years.

Guilt frequently pervades households in which a child is dying. The healthy siblings feel guilty for being jealous of the attention showered on the ill child. The parents feel guilty for not giving equal time to all their children. These feelings can be eased when parents enforce normal household rules for the dying child as well as the other youngsters. A child who is too weak to perform usual household tasks can be given manageable assignments; instead of doing dishes, she can brush the dog. A child overloaded with gifts from well-wishers can be encouraged to share some of the presents with brothers and sisters. Discipline should be handed out evenly; being ill is not an excuse for acting inappropriately. Distraught mothers and fathers may appreciate guidance from a physician on these parental tasks they ordinarily perform instinctively.

Home hospice

When death is inevitable, the family faces a difficult decision: Where should the child's last days be spent? Most children prefer to be at home rather than in the hospital. Most parents also would rather have the child remain home, but they may question their ability to meet all of the child's medical needs.

Parents also can avail themselves of home hospice services. With the help of hospice's multidisciplinary team of specialists in terminal care, families can remain together through the end and experience a "good" death. Hospice workers help families attend to the child's physical needs, and they also provide healing avenues for parents and children to work through their grief. Parents who have cared for a dying child with the help of hospice almost always state that they are glad they chose this alternative.

Some families decide against hospice care. It may be a financial decision, because not all insurance policies cover home care or hospice services. In other cases, the parents do not consider themselves capable of caring for the child at home. Or a family may be willing to care for the child but want death to occur in the hospital. Parents may feel guilty for not being with the child in his or her greatest moment of need. The guilt can be assuaged by a physician's support for whatever decision they make.

Be aware that some hospices do not work with pediatric patients. Others not only care for children but make the services available before the terminal phase of illness so that hospice workers can establish rapport with the family. Before recommending hospice care, find out what services are available locally.

After the child dies

The death of a child is the most difficult loss that parents will ever face. They never "get over it," but they can adjust to the loss. The first two years after the death are the most difficult. They may need someone who is not embarrassed to talk about the dead child and the changes in their lives.

If possible, reach out to the siblings separately from the parents. The children's grief is likely to assume a different form. Youngsters have many milestones to face on the path to adulthood, and they are anxious to move forward in their lives even as they mourn a dead brother or sister. Parents may not be ready to move ahead as rapidly. When you have an opportunity to speak with the siblings alone, ask how they and the family are doing. They may confide that they feel mourning rituals, such as visiting the cemetery, are continuing too long. On the other hand, they may be perplexed by their sadness at an age of life that is supposed to be happy.

Both parents and children may find it helpful to read books about death [Editor's note: See "Bookshelf: Books for children when a friend dies," October 2001.] Parents will recognize themselves in books written by others who have been down the same sad path and will take heart in the message that life goes on. Children will feel relieved that the sadness and loss, as well as the guilt and jealousy, they may have experienced are perfectly normal. They can also benefit from learning about healing strategies that other children have found to be effective.

Parents who have lost an infant immediately after birth may have an especially difficult time coping with the death. People who do not recognize the extent of their grief may try to console them with insensitive remarks like, "You can have other children." These parents in particular may need support from the health-care community, infant loss support groups, and compassionate friends.

Families who have lost a child in an accident also may require extra support. Unlike families in which a child died of a chronic illness, they have had no opportunity for anticipatory grief. One day their child was a normal, healthy youngster; the next day the child was dead. Although no one can ever fully prepare for the death of a loved one, anticipatory grief eases the burden following the death. All the work of grieving must be done afterward when an accident is the cause of death. Parents may be torn by guilt for their failure to protect their child from what they view as an avoidable tragedy, and they may regret that they never had a chance to say goodbye.

The first anniversary of a death often marks a turning point for the bereaved, but the day itself can be particularly difficult. Another hard day is the birthday of the deceased.

REFERENCES

1. Guyer B, MacDorman MF, Martin JA, et al: Annual summary of statistics: 1997. Pediatrics 1998;102:1333

2. Faulkner KW: Talking about death with a dying child. Am J Nursing 1997;97:64

3. American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care: Palliative care for children (RE0007). Pediatrics 2000;106:351

4. Wolfe J, Grier HE, Klar N, et al: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000;342:326

Partridge JC, Wall SN: Analgesia for dying infants whose life support is withdrawn or withheld. Pediatrics 1997; 99:76

Robinson WM, Ravilly S, Berde C, et al: End-of-life care in cystic fibrosis. Pediatrics 1997;100:205