Talking about Death with Dying Children
http://www.100md.com
《新英格兰医药杂志》
To the Editor: Kreicbergs et al. (Sept. 16 issue)1 discovered that among the Swedish parents surveyed, those who had talked to their dying child about death reported no regrets about having had that discussion. Conversely, 27 percent of the parents who had not talked to their child about the impending death did regret having omitted this conversation.
Although I agree that such conversation is often beneficial, I have witnessed situations in which talking about dying has been distressing and unwelcome to the parent and child alike. The corollary of the findings reported by Kreicbergs et al. is that the majority (73 percent) of the parents who chose not to talk to their dying child about death did not regret it. This excellent study provides valuable guidance, but for optimal family-centered care, we should be careful not to extrapolate the findings to suggest that talking is always better.
Dawn E. Davies, F.R.C.P.(C.)
University of Alberta
Edmonton, AB T6G 2B7, Canada
dawn.davies@ualberta.ca
References
Kreicbergs U, Valdimarsdóttir U, Onel?v E, Henter J-I, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med 2004;351:1175-1186.
To the Editor: Kreicbergs and colleagues make me wonder whether talking about death is in children's best interest. Among adults, talking about death enhances autonomy, facilitates decision making (i.e., preparation of a living will), and helps finalize affairs. Among children, however, these benefits do not exist. Autonomy does not develop until early adolescence; children younger than five to seven years of age do not understand the concept of death.1,2,3 Besides, it is unclear whether children want to know about death, since even some adults prefer not to know.4 It is selfish to prevent our own regrets by exposing children to the possible fear, sadness, or alienation associated with the truth of dying.
Moreover, the observation that parents who talked about death with their child did not regret having done so does not necessarily mean that parents who are not inclined to talk about death will have less regret if they do talk. Talkers and nontalkers may be different types of people: for example, a larger proportion of the talkers than of the nontalkers were religious — a trait that has been found to be associated with reduced guilt.5
I believe that parents should not be encouraged to talk about their child's impending death if they believe that silence is in the child's best interest. Some children deserve an exemption from purposeless information.
Tawee Tanvetyanon, M.D.
Loyola University Chicago Stritch School of Medicine
Maywood, IL 60153
tan73@hotmail.com
References
Speece MW, Brent SB. Children's understanding of death: a review of three components of a death concept. Child Dev 1984;55:1671-1686.
Inagaki K, Hatano G. Young children's understanding of the mind-body distinction. Child Dev 1993;64:1534-1549.
Eccles JS. The development of children ages 6 to 14. Future Child 1999;9:30-44.
Leydon GM, Boulton M, Moynihan C, et al. Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ 2000;320:909-913.
McIllmurray MB, Francis B, Harman JC, Morris SM, Soothill K, Thomas C. Psychosocial needs in cancer patients related to religious belief. Palliat Med 2003;17:49-54.
The authors reply: The findings of our observational study cannot be used to predict the effects of an intervention. Consequently, our article had little to say about the implications of our findings; in it, we suggest that parents seeking advice might benefit from the finding that none of the parents we questioned regretted having talked about death with their child. We also emphasize the responsibility of health care workers to help parents respond to the needs and wants of their terminally ill child.
To intervene when parents do not seek advice is more problematic. As highlighted by Dr. Davies, the finding that 189 parents in our study did not regret not having talked about death indicates that we cannot conclude that every parent with a terminally ill child should talk with the child about death. As stated by Dr. Tanvetyanon, our data do not support an intervention in which parents are asked to talk about death despite their belief that silence is in the child's best interest. Such unjustifiable implications can harm some parents and children. We have no indication that nontalkers constitute a subgroup of parents who also would have regretted talking, as suggested by Dr. Tanvetyanon. We found that no religious parent regretted having talked about death and that 35 percent of the religious parents regretted not having talked about death with their terminally ill child.
As Dr. Tanvetyanon points out, the child's needs and wants are central. Our initial interviews with parents and their free comments during the main survey indicate that parents sensed the child's unmet needs and thereby regretted not having talked. We found that the child's age, as noted by Dr. Tanvetyanon, is related to the child's awareness of impending death and possibly also to predictors of the child's need to talk. Yet we cannot be certain when talking, or when not talking, about death is in the best interest of an individual child. Whether or not to intervene, when we sense that a child might benefit from talking, remains a matter of personal sensitivity, communication skills, and clinical experience.
Ulrika Kreicbergs, R.N., Ph.D.
Unnur Valdimarsdóttir, Ph.D.
Gunnar Steineck, M.D., Ph.D.
Karolinska Institutet
S-171 76 Stockholm, Sweden
gunnar.steineck@onkpat.ki.se
Although I agree that such conversation is often beneficial, I have witnessed situations in which talking about dying has been distressing and unwelcome to the parent and child alike. The corollary of the findings reported by Kreicbergs et al. is that the majority (73 percent) of the parents who chose not to talk to their dying child about death did not regret it. This excellent study provides valuable guidance, but for optimal family-centered care, we should be careful not to extrapolate the findings to suggest that talking is always better.
Dawn E. Davies, F.R.C.P.(C.)
University of Alberta
Edmonton, AB T6G 2B7, Canada
dawn.davies@ualberta.ca
References
Kreicbergs U, Valdimarsdóttir U, Onel?v E, Henter J-I, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med 2004;351:1175-1186.
To the Editor: Kreicbergs and colleagues make me wonder whether talking about death is in children's best interest. Among adults, talking about death enhances autonomy, facilitates decision making (i.e., preparation of a living will), and helps finalize affairs. Among children, however, these benefits do not exist. Autonomy does not develop until early adolescence; children younger than five to seven years of age do not understand the concept of death.1,2,3 Besides, it is unclear whether children want to know about death, since even some adults prefer not to know.4 It is selfish to prevent our own regrets by exposing children to the possible fear, sadness, or alienation associated with the truth of dying.
Moreover, the observation that parents who talked about death with their child did not regret having done so does not necessarily mean that parents who are not inclined to talk about death will have less regret if they do talk. Talkers and nontalkers may be different types of people: for example, a larger proportion of the talkers than of the nontalkers were religious — a trait that has been found to be associated with reduced guilt.5
I believe that parents should not be encouraged to talk about their child's impending death if they believe that silence is in the child's best interest. Some children deserve an exemption from purposeless information.
Tawee Tanvetyanon, M.D.
Loyola University Chicago Stritch School of Medicine
Maywood, IL 60153
tan73@hotmail.com
References
Speece MW, Brent SB. Children's understanding of death: a review of three components of a death concept. Child Dev 1984;55:1671-1686.
Inagaki K, Hatano G. Young children's understanding of the mind-body distinction. Child Dev 1993;64:1534-1549.
Eccles JS. The development of children ages 6 to 14. Future Child 1999;9:30-44.
Leydon GM, Boulton M, Moynihan C, et al. Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ 2000;320:909-913.
McIllmurray MB, Francis B, Harman JC, Morris SM, Soothill K, Thomas C. Psychosocial needs in cancer patients related to religious belief. Palliat Med 2003;17:49-54.
The authors reply: The findings of our observational study cannot be used to predict the effects of an intervention. Consequently, our article had little to say about the implications of our findings; in it, we suggest that parents seeking advice might benefit from the finding that none of the parents we questioned regretted having talked about death with their child. We also emphasize the responsibility of health care workers to help parents respond to the needs and wants of their terminally ill child.
To intervene when parents do not seek advice is more problematic. As highlighted by Dr. Davies, the finding that 189 parents in our study did not regret not having talked about death indicates that we cannot conclude that every parent with a terminally ill child should talk with the child about death. As stated by Dr. Tanvetyanon, our data do not support an intervention in which parents are asked to talk about death despite their belief that silence is in the child's best interest. Such unjustifiable implications can harm some parents and children. We have no indication that nontalkers constitute a subgroup of parents who also would have regretted talking, as suggested by Dr. Tanvetyanon. We found that no religious parent regretted having talked about death and that 35 percent of the religious parents regretted not having talked about death with their terminally ill child.
As Dr. Tanvetyanon points out, the child's needs and wants are central. Our initial interviews with parents and their free comments during the main survey indicate that parents sensed the child's unmet needs and thereby regretted not having talked. We found that the child's age, as noted by Dr. Tanvetyanon, is related to the child's awareness of impending death and possibly also to predictors of the child's need to talk. Yet we cannot be certain when talking, or when not talking, about death is in the best interest of an individual child. Whether or not to intervene, when we sense that a child might benefit from talking, remains a matter of personal sensitivity, communication skills, and clinical experience.
Ulrika Kreicbergs, R.N., Ph.D.
Unnur Valdimarsdóttir, Ph.D.
Gunnar Steineck, M.D., Ph.D.
Karolinska Institutet
S-171 76 Stockholm, Sweden
gunnar.steineck@onkpat.ki.se