Parents of dying children mourn what they didn’t say

Those who talked to them about death had no regrets

Children who know they will die soon face many common fears, including loss of control, pain, and causing sadness to their families. Swedish researchers have found that parents who talked openly with their dying children about these and other related issues did not regret it, while parents who avoided the painful discussions now wish they hadn’t.

"Pediatric oncologists can now say, based not only on their own experience but also with the support of hundreds of parents in the study, that no parents regret having spoken with their child about his/her death," says Ulrika Kreicbergs, RN, the lead researcher who conducted the study as part of her doctoral dissertation. Several factors, ranging from the child’s age, the parents’ degree of religious belief, and the child’s knowledge of his or her own condition influenced whether parents talked with the children about death.

The study team contacted all parents of children who died of cancer in Sweden between 1992 and 1997 — 561 questionnaires were sent out, and 449 parents responded. Parents were contacted four to nine years after their child’s death, and asked 129 questions about the child’s care, whether parents had spoken with the child about death, and the parents’ mental health status in the years following the child’s death.

Only 34% of the parents had talked with their child about death, according to the study. Of the 66% who did not, 73% were comfortable with their decision. But more than one in four (27%) said they regretted not talking to their child about death. None of the parents who had a discussion about death with their child regretted doing it.

Silence not really golden

One hundred forty-seven parents reported they had talked with their children about death, and none reported feeling regret over having done so.

However, 69 of the 258 parents (26.7%) who had not spoken with their children about death later regretted not having done so. Most said their regret stemmed from the knowledge that their children knew they were dying.

"If the child seemed to be aware of his/her impending death, which most of them are, then this communication is even more vital," Kreicbergs says.

The researchers wrote in their report that they were surprised that two-thirds of the parents had not talked at all to their ill children about death. The authors said parents need to follow their intuition.

"The shielding and the taboos we have are obsolete — they’re old-fashioned," wrote co-author Gunnar Steineck, MD. "They should not hinder us from talking about death when we feel it’s right."

The parents told researchers that their child’s age, both at the time of the diagnosis and at the time the child died, appeared to be a factor in the parents’ decision to talk about death. Parents of children younger than 3 years were the least likely to have brought up the subject.

Parents who considered themselves religious — whether slightly religious or strongly so — also were more likely to broach the topic of death with their child. In fact, they were nearly twice as likely as people who said they were not at all religious.

One of the strongest predictors of whether a parent would discuss death with a child was whether the child seemed to be aware of his or her own imminent death. If a parent believed the child was aware that the illness was terminal, parents were more than four times as likely to discuss death with their child. Also, parents with another, older child or older children were more likely to talk to their dying child about death.

"Caring staff should pay attention to whether a child is aware he/she is about to die, and in affirmative cases they should support parents who are reluctant to talk to their child about death," says Kreicbergs.

Many doctors and medical organizations encourage parents to discuss death with terminally ill children because they believe it helps the child. But little research has been done on the subject, Kreicbergs says, and some of her colleagues resisted the researchers’ speaking with their patients (the parents of the deceased children), because they were afraid talking about the children’s deaths would cause the parents more pain.

Betty Ferrell, RN, PhD, FAAN, professor in the Department of Nursing Research and Education, City of Hope National Medical Center in Los Angeles, is the author of a national curriculum, the End of Life Nursing Education Consortium, that trains nurses how to improve care for dying children and how to foster communication among the medical staff, parents, and children.

She says that parents "sometimes say the wrong things, or don’t speak up with the right things, out of compassion." Nurses who care for terminally ill children should be attuned to what the child is feeling, and should be able to help parents talk with their children.

In fact, it was Kreicbergs’ experience as a young nurse a decade ago that prompted her to come up with the study. She says she was unhappy with the way the staff of the hospital where she worked and the families of three dying boys avoided talking about the subject of death.

Cindy Squire, MS, APRN, of the University of Utah College of Nursing, Salt Lake City, points out that children — especially older children — usually know that they are going to die and face some common fears, including loss of control, causing hardship for others, suffering, fear of the unknown, uncertainty about the afterlife, being alone, and being forgotten.

Health care providers can reassure patients that their feelings and fears are to be expected, and should provide physical closeness and comfort to the child. She says nurse and physician providers should be sensitive to nuances in the child’s behavior that hint at when the child might want to talk about his or her disease and future, and how much they want to talk about it.

"Parents and providers need to talk with children about death in an honest, specific way and give children an opportunity to make decisions about care whenever possible," she suggests. "This is particularly important when the patient is an adolescent."

Squire offers specific suggestions to parents for keeping communication open and making the child feel comfortable about talking; many hinge on keeping the child’s life as normal as possible:

  • Require the child to follow reasonable family rules and behavioral expectations.
  • Include siblings and pets.
  • Continue to participate in social events and family celebrations.
  • Keep the child near the center of family activity in the home.
  • Engage in activities that might otherwise have been postponed or neglected because of the child’s illness.

Reference

1. Kreicbergs U, et al. Talking about death with children who have severe malignant disease. N Engl J Med 2004; 351:1,251-1,253.

Sources

  • Betty Ferrell, RN, PhD, FAAN, Professor, Department of Nursing Research and Education, City of Hope National Medical Center, Los Angeles, CA. Phone: (626) 359-8111. E-mail: bferrell@coh.org
  • Ulrika Kreicbergs, RN, Karolinska Institutet, Stockholm, Sweden. E-mail: ulrika.kreicbergs@onkpat.ki.se
  • Cindy Squire, MS, APRN, University of Utah, College of Nursing, 10 South 2000 East, Salt Lake City, UT 84112. Phone: (801) 585-9621. E-mail: cindy.squire@nurs.utah.edu.