Losses due to death may seem to be infrequent for children cared for by primary pediatricians because fatal illnesses occur less frequently than in former years. However, some mothers miscarry or give birth to preterm infants who fail to survive. Grandparents often die. And more often than we realize, a parent dies. During the first 10 years of their lives, 6% of children lose a parent. Children often experience other vital losses, such as uncles, aunts, cousins, siblings, playmates, teachers, and favorite recreation leaders. The highly televised deaths of individuals who children never may have met, such as Martin Luther King, Jr, President John F. Kennedy, and those killed during the September 11 terrorist attack, evoke frightening feelings among children as well as adults.
Forty years ago, early in my years of pediatric practice, I was surprised to observe during pediatric prenatal conferences that women and men frequently became tearful when discussing family medical histories and deaths of loved ones that took place during their childhood. One woman recalled: “I was 4 years old when my grandmother died. I was sent to a friend’s house for the day. When I returned home in the evening, my grandmother was gone. I was very upset. It was several years before I understood what had happened to her.”
Although my own father died when I was an infant, a loss that permeated my childhood and adolescence, I was slow to realize the importance of the role that I as a primary pediatrician could assume when children and adolescents in my practice experienced the death of relatives or close friends.
Grieving following the loss of an important person in one’s life is not an illness that can be cured. It is, however, a major stressful experience for children and their parents. The American Academy of Pediatrics Committee on Psychosocial Aspects of Child and Family recommends that pediatricians assist families at these tragic moments.
My interest in children experiencing losses of beloved individuals was intensified in 1966 while serving as a physician in an elementary school. One day the principal phoned to tell me that a beloved first grade teacher had suffered a fatal heart attack in the hallway. He suggested that I meet with the class, assuming that I would be able to help the children understand the meaning of death and to cope with their feelings of loss. I began my discussion with the first grade children saying: “We are all upset because Mrs. Smith died yesterday. It is very sad when people we love die! Many grown-ups and children cry when this happens. Some people like to listen to music at this sad time. Others like to close their eyes and think about the person who died. What do you feel like doing?”
The children raised their hands. “We want to see her. Please take us in your station wagon!” said one child. Another child commented, “She must be somewhere!” I was struggling to respond when Patty, a 7-year-old with bright shining eyes and long black braids, commented, “Last week my dog was hit by a car. I found him lying in the street. He was stiff and cold. When I petted him, he didn’t respond. He didn’t know I was there. I don’t think Mrs. Smith would know we were there either.”
A few weeks later I visited a nursery school 1 day after a pet guinea pig had been found dead in his cage. A veterinarian had embalmed the animal, and the body lay on a red blanket on a table in the center of the room. I observed 3-year-old Bobby stroke the animal’s body and comment seriously, “What’s in him can’t come out any more.” I was impressed that at this young age he was aware of what being dead meant to the guinea pig. The comments of these two children convinced me that the loss of a pet helps children begin to comprehend that death ends all activities.
I decided to mention routinely to parents in the pediatric prenatal conference or in an initial visit to my practice that I was interested in being available to support parents and children when they suffered any unusual events, such as the loss of a family member or friend.
When the patient was a child for whom I served as primary pediatrician and had referred to colleagues for specialized care, I frequently visited the child and family at the local hospital or maintained phone contact with the family if the hospitalization was at a distance. I requested that I be kept informed of the course of the child’s illness and that a member of the staff phone me immediately if the child should die. Whenever possible, I would appear on the ward at this sad moment. If the child had been hospitalized in another city, I would phone the family as soon as they returned home to express my sympathy.
Parents in my practice frequently have conferred with me when a close family member or friend was terminally ill or had died. They often asked for suggestions about how to share with their children the seriousness of the illness or the fact that death had taken place. Many parents asked how to explain to children why they were so preoccupied at the moment. I suggested that it was helpful to explain the facts of the person’s illness honestly with children, such as, “Grandpa is very sick. We are all very sad. The doctors are doing everything they can to help him, but I am afraid he may die.”
Parents may fear that they will cry during this discussion. I do not believe this to be harmful. Indeed, a child may view the adult’s tears as permission to burst into tears while being cuddled in the arms of the adult he or she knows so well. This is certainly better than for a child to cry curled up under the bedclothes in his or her own room.
As a death nears or occurs, I suggest that the parent continue the conversation realistically: “Do you remember I told you that grandpa is very sick and might die? I think he may die soon” or “I am sorry to have to tell you that Grandpa died a little while ago.”
Parents often wonder whether a child should attend a funeral or memorial service. A relative or close friend can offer to describe the service and encourage a child to decide whether he or she wishes to attend in the following manner: “The funeral is the way we say goodbye when a person dies. Many of our relatives and friends will be there. Everybody will be very sad. Many grown-ups will cry. Our minister (or priest or rabbi) and some relatives and close friends may talk about grandpa (or whoever died). If you would like to be there, I would like to have you come with me. However, if you don’t want to be there, that’s okay, too.”
It is wise for a relative or other familiar adult to accompany the child during the service. Parents who are preoccupied with their own grief often find it difficult to support a child at this time. If a child chooses not to attend the funeral, arrangements should be made for him or her to remain in the familiar home surroundings with an adult relative or friend.
Children and adults also need time to accept and adjust to the permanence of the loss of a beloved individual. Parents frequently are surprised when a child, even one who has attended a funeral or been told about a death, comments a few days later, “He will be back for my birthday, won’t he? He always comes to my party.” I suggest that an appropriate response is, “You remember we said goodbye at the funeral? We will have to try to remember how much we loved him and the many happy times when he was with us.”
Children often ask what happens to people after they die. In answering this question, the careful choice of words is important and, of course, varies with the beliefs of the family.
Twenty-five years ago I attended a conference, “The Child and Death,” at Strong Memorial Hospital in Rochester, New York. I still remember Lorraine Szybist, age 14, sharing her thoughts and feelings about her brother’s death of sudden infant death syndrome at the age of 3 months, when she was 2 years old. “I am 14 years old now and it’s been a long time since my brother died. However, in lots of ways I still think about him. The problem is, except for my mom, no one wants to talk about it. When I ask questions, it makes them feel bad, which makes me feel bad that I asked. He was my brother and I want to know what happened and how people felt. My mom told me that she didn’t take me to the funeral. It makes me mad now to think that they left me home with someone else.” The 12 years since the baby’s death had been difficult for Lorraine Szybist. She wished many times for an opportunity to talk with an adult and share her feelings about the loss of her baby brother. It was only as she reached adolescence that she and her mother began to discuss the details of his death. Each year in the month of his birthday, they talked about what he might be like if he were alive at this time.
I have found that a telephone call or a brief handwritten condolence letter to a bereaved family and sending a specific note in an envelope addressed to children and adolescents always is appreciated. I mention that I am very sad about the death of the person, and I know that the family members will feel sad for a long time. This message reassures both adults and children that, as their pediatrician, I am thinking about them at this sad moment.
The death of a parent during adolescence has a special connotation. Healthy adolescents frequently are intensely independent, determined to manage their own lives and make their own decisions. Yet at other times, particularly during moments of stress, adolescents may return temporarily to an earlier phase of seeking care and advice from parents that is in contrast to their behavior during the independent phase. When a parent dies, the comforting return to an earlier relationship is no longer possible. In addition, surviving family members are likely to be preoccupied with their own grieving and are less available to adolescents than in the past. Many students returning to preparatory school or college after experiencing a loss of a loved one are surprised that classmates and staff members often fail to express sympathy. A preparatory school student commented, “After all I did for the basketball team, neither the coach, any member of team, nor any of my teachers mentioned that they were sorry that my father had died.”
I routinely mail a hand-written note a few weeks after the death of a family member to my patients attending preparatory school or college in another city, commenting that I know this to be a difficult time for them. I inquire as to how they are getting along and state that I look forward to talking with them by phone or in person when they return home. Many patients recalled years later the sense of relief they felt on receiving my letter. One student commented: “When I saw your handwriting on the envelope, I felt relieved knowing you were still there if I needed you!”
Children and adolescents experiencing the loss of a loved one frequently have bodily aches and pains and ask to see their doctors. It is important to offer an early appointment for these individuals. The availability and interest of the individual’s physician is reassuring. Often these patients present with signs of an upper respiratory tract disease or other viral illness. The clinician must remember that a serious illness can be present during bereavement.
A primary pediatrician can provide significant support for a family when a miscarriage, stillbirth, or neonatal death occurs. Well-meaning individuals often comment to a woman at this sad moment, “You are young and can get pregnant again.” One distraught woman commented, “I know I can get pregnant again. However, I lost someone very dear to me. I need time to deal with this before I can think of starting over again.” Arranging for a distraught mother and father to see or even hold the deceased infant if they wish is important. A year after her 3-day-old infant died, one mother stated, “If I only had held my baby in my arms for a few minutes, I would have been able to say goodbye and begin to grieve.”
Parents and siblings in a family that has experienced the death of an infant often have intense dreams about what the baby might have grown to become. It is the loss of these hopes that adults and children experience repeatedly on birthdays and other anniversaries.
The degree of involvement of a primary pediatrician depends to a great extent on his or her own personal experiences with losses and how various individuals did or did not offer support at that time. My experiences in this role during my 4 decades of primary pediatric practice have been satisfying and rewarding, even though I could not cure or reverse the permanence of a loss of an important person in the life of a family.
Leon IG. When a Baby Dies. New Haven, Conn: Yale University Press;l990
Policy statement: the pediatrician and childhood bereavement. Pediatrics.1992;89 :516– 518
Szybist LA. Thoughts of a sister. In: Sahler OJ, ed. The Child and Death. St. Louis, Mo: CV Mosby;1978:280– 282
Wessel M. The role of the primary pediatrician when a child dies [editorial]. Arch Pediatr Adolesc Med.1998;152 :1– 4
- Copyright © 2003 by the American Academy of Pediatrics