Should Parents Speak with a Dying Child about Impending Death?
http://www.100md.com
《新英格兰医药杂志》
In 1985, a reading of Patrick Irvine's essay in the Journal about his participation in the funerals of his patients1 eased concerns of my own about attending the funerals of my young patients who have succumbed to cancer. At these services, I have heard "Suffer the little children . . ." from the New Testament and the 23rd Psalm from the Old Testament many times. These words are regularly chosen to help alleviate the inconsolable grief that follows the death of a child. The presence of the physician at these funerals can honor the struggle of the family and the value and courage of the child. My participation in these observances serves to remind me of the importance of helping families to deal with the death of a child and to try to piece together a constructive outcome from an event without purpose.
What could possibly be constructive for those left behind? There are always opportunities for physicians to comfort, guide, reassure, and, most important, create a presence or a rapport that enables healing before and after the death of a child. From the caregiver's point of view, such opportunities are tangible: one can teach parents how to cope, point to the boundaries of difficult behavior, prepare the child's loved ones for grief, encourage the family to remain intact, and provide a sense of safety and importance to surviving siblings.2 There will also arise the opportunity to transmit a deep understanding of the greatest fear of all — what dying will actually feel like to the child and what it will look like to the family. The experienced oncologist or nurse can create a path for the family to follow when imminent death confronts them in a way they can no longer deny.
For children, the distinction between curative intent and palliative care is not sharp.3 Parents, however, need to feel that they have left no stone unturned to find a cure for their child, and access to the Internet only intensifies this need. Possibilities for physicians to choose a time to stop treating arise only occasionally. Hence, one always has to be on the lookout for the fleeting moment that allows the doctor to begin to plant the seeds of bereavement,4 to broach the possibility of the child's death, and to initiate anticipatory grief,5 even while hope remains. An important aspect of this undertaking is revealing the possibility of death to the patient and his or her siblings.
Often, parents respond immediately to these initial measures with attempts to shelter the patient and their other children from the idea of approaching death. But who among us would not have the same reaction? In telling the child, do we not have to truly hear it ourselves? Once the awful idea is accepted, what parents would not feel despair and failure? What parents would not want to protect their children from the news of death — a word that, in our society, can be synonymous with evil, contamination, and darkness? How do we, as physicians, convince a family that out of their emotional whirlpool may come a time of clarity: caring and love at best, and the roots of survival for family members at the least?
Medicine and experience have taught me to be on guard for the time when everyone sees the "elephant in the room," the taboo subject that everyone knows about — in this case, the impending death of a child. The time to talk arrives when the child knows that something is very wrong, when a parent sees the potential for the death of the child, or when a sibling is aware of losing a special brother or sister. Once these possibilities become apparent, a compassionate approach to truth telling can begin. No physician can say the right thing or give the right medication to end grief. Our death rituals contain powerful balms, but even they will not immediately relieve the grief surrounding the loss of a child. All we can do is align the family with the truth, told in age-appropriate, culturally appropriate ways, and allow the transition from shock toward acceptance to unfold. With the elephant in the room now revealed, the reality of what will occur enables the anticipation of grief and often a remarkable process that eases some of the pain of the loss.
I have seen children with cancer respond to the idea of their dying with startling maturity — a nine-year-old boy left a legacy by giving his prized possessions to his friends, planned his funeral, and decided what he would wear to his burial — and I have seen a dysfunctional family filled with anger about a presumed late diagnosis come together in a hospital room, acknowledging to me that their experience completely changed how they viewed the world and one another. These examples are not exceptional. On the contrary, they are representative of responses to the idea of death that has become a conscious reality.
In this issue of the Journal, Kreicbergs et al. present a study that is remarkable for its focus and potential influence.6 Through questionnaires, they asked parents who had lost a child to cancer if they had discussed death directly with the child. The authors then asked these parents whether or not they regretted the decision. None of the parents who discussed death with the child had regrets, whereas 27 percent of the parents who did not talk with their child about death regretted not having done so. Of those 27 percent, the majority regretted it because they realized that their child seemed to be aware of his or her imminent death. Although parents may never truly resolve their grief after the death of a child, disproportionate subgroups of parents who regretted not having talked with their children demonstrated signs of continuing depression and anxiety.
There is ample evidence that even very young children have an understanding that death exists,7 that the attitude toward death and its meaning follows a powerful developmental ladder, and that grieving families can benefit when they can relate to the child who is aware of impending death.8 The study by Kreicbergs et al. uses new statistical models and a large population to give a clear message about the intimate emotional experience of parents with a dying child. Pediatric oncologists can now say, not only from their own experience but also from the experience of the hundreds of parents in this study, that no parent regretted talking to his or her child about death. If the child appeared to be aware of impending death (and I believe most such children are), this communication became even more important.
Just as outcome studies help the specialist who cares for the failing heart, these kinds of investigations may help those of us who care for the breaking heart as well.
Source Information
From Tufts–New England Medical Center, Boston.
References
Irvine P. The attending at the funeral. N Engl J Med 1985;312:1704-1705.
Howell D. The role of the primary physician. In: Armstrong-Dailey A, Goltzer SZ, eds. Hospice care for children. New York: Oxford University Press, 1993:172-88.
Himelstein BP, Hilden JM, Boldt AM, Weissman D. Pediatric palliative care. N Engl J Med 2004;350:1752-1762.
Wolfe LC. End of life care of the pediatric oncology patient. In: Burg F, Ingelfinger J, Wald E, Polin R, eds. Gellis & Kagan's current pediatric therapy 17. Philadelphia: W.B. Saunders, 2002:1034-7.
Sourkes BM. The deepening shade: psychological aspects of life-threatening illness. Pittsburgh: University of Pittsburgh Press, 1982:67-76.
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.
Kastenbaum R. The child's understanding of death: how does it develop? In: Grollman E, ed. Explaining death to children. Boston: Beacon Press, 1967:89-108.
Faulkner K. Children's understanding of death. In: Armstrong-Dailey A, Goltzer SZ, eds. Hospice care for children. New York: Oxford University Press, 1993:9-21.(Lawrence Wolfe, M.D.)
What could possibly be constructive for those left behind? There are always opportunities for physicians to comfort, guide, reassure, and, most important, create a presence or a rapport that enables healing before and after the death of a child. From the caregiver's point of view, such opportunities are tangible: one can teach parents how to cope, point to the boundaries of difficult behavior, prepare the child's loved ones for grief, encourage the family to remain intact, and provide a sense of safety and importance to surviving siblings.2 There will also arise the opportunity to transmit a deep understanding of the greatest fear of all — what dying will actually feel like to the child and what it will look like to the family. The experienced oncologist or nurse can create a path for the family to follow when imminent death confronts them in a way they can no longer deny.
For children, the distinction between curative intent and palliative care is not sharp.3 Parents, however, need to feel that they have left no stone unturned to find a cure for their child, and access to the Internet only intensifies this need. Possibilities for physicians to choose a time to stop treating arise only occasionally. Hence, one always has to be on the lookout for the fleeting moment that allows the doctor to begin to plant the seeds of bereavement,4 to broach the possibility of the child's death, and to initiate anticipatory grief,5 even while hope remains. An important aspect of this undertaking is revealing the possibility of death to the patient and his or her siblings.
Often, parents respond immediately to these initial measures with attempts to shelter the patient and their other children from the idea of approaching death. But who among us would not have the same reaction? In telling the child, do we not have to truly hear it ourselves? Once the awful idea is accepted, what parents would not feel despair and failure? What parents would not want to protect their children from the news of death — a word that, in our society, can be synonymous with evil, contamination, and darkness? How do we, as physicians, convince a family that out of their emotional whirlpool may come a time of clarity: caring and love at best, and the roots of survival for family members at the least?
Medicine and experience have taught me to be on guard for the time when everyone sees the "elephant in the room," the taboo subject that everyone knows about — in this case, the impending death of a child. The time to talk arrives when the child knows that something is very wrong, when a parent sees the potential for the death of the child, or when a sibling is aware of losing a special brother or sister. Once these possibilities become apparent, a compassionate approach to truth telling can begin. No physician can say the right thing or give the right medication to end grief. Our death rituals contain powerful balms, but even they will not immediately relieve the grief surrounding the loss of a child. All we can do is align the family with the truth, told in age-appropriate, culturally appropriate ways, and allow the transition from shock toward acceptance to unfold. With the elephant in the room now revealed, the reality of what will occur enables the anticipation of grief and often a remarkable process that eases some of the pain of the loss.
I have seen children with cancer respond to the idea of their dying with startling maturity — a nine-year-old boy left a legacy by giving his prized possessions to his friends, planned his funeral, and decided what he would wear to his burial — and I have seen a dysfunctional family filled with anger about a presumed late diagnosis come together in a hospital room, acknowledging to me that their experience completely changed how they viewed the world and one another. These examples are not exceptional. On the contrary, they are representative of responses to the idea of death that has become a conscious reality.
In this issue of the Journal, Kreicbergs et al. present a study that is remarkable for its focus and potential influence.6 Through questionnaires, they asked parents who had lost a child to cancer if they had discussed death directly with the child. The authors then asked these parents whether or not they regretted the decision. None of the parents who discussed death with the child had regrets, whereas 27 percent of the parents who did not talk with their child about death regretted not having done so. Of those 27 percent, the majority regretted it because they realized that their child seemed to be aware of his or her imminent death. Although parents may never truly resolve their grief after the death of a child, disproportionate subgroups of parents who regretted not having talked with their children demonstrated signs of continuing depression and anxiety.
There is ample evidence that even very young children have an understanding that death exists,7 that the attitude toward death and its meaning follows a powerful developmental ladder, and that grieving families can benefit when they can relate to the child who is aware of impending death.8 The study by Kreicbergs et al. uses new statistical models and a large population to give a clear message about the intimate emotional experience of parents with a dying child. Pediatric oncologists can now say, not only from their own experience but also from the experience of the hundreds of parents in this study, that no parent regretted talking to his or her child about death. If the child appeared to be aware of impending death (and I believe most such children are), this communication became even more important.
Just as outcome studies help the specialist who cares for the failing heart, these kinds of investigations may help those of us who care for the breaking heart as well.
Source Information
From Tufts–New England Medical Center, Boston.
References
Irvine P. The attending at the funeral. N Engl J Med 1985;312:1704-1705.
Howell D. The role of the primary physician. In: Armstrong-Dailey A, Goltzer SZ, eds. Hospice care for children. New York: Oxford University Press, 1993:172-88.
Himelstein BP, Hilden JM, Boldt AM, Weissman D. Pediatric palliative care. N Engl J Med 2004;350:1752-1762.
Wolfe LC. End of life care of the pediatric oncology patient. In: Burg F, Ingelfinger J, Wald E, Polin R, eds. Gellis & Kagan's current pediatric therapy 17. Philadelphia: W.B. Saunders, 2002:1034-7.
Sourkes BM. The deepening shade: psychological aspects of life-threatening illness. Pittsburgh: University of Pittsburgh Press, 1982:67-76.
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.
Kastenbaum R. The child's understanding of death: how does it develop? In: Grollman E, ed. Explaining death to children. Boston: Beacon Press, 1967:89-108.
Faulkner K. Children's understanding of death. In: Armstrong-Dailey A, Goltzer SZ, eds. Hospice care for children. New York: Oxford University Press, 1993:9-21.(Lawrence Wolfe, M.D.)