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© 2003 American Society for Clinical Oncology
Tell the Children
1 From the Department of Hematology/Oncology, Children’s Hospitals and Clinics; and Children’s Home Care and Hospice, St Paul, MN. Address reprint requests to Joanne Hilden, MD, Department of Hematology/Oncology, Children’s Hospitals and Clinics, 345 N Smith Ave, St Paul, MN 55102; email hilde005{at}tc.umn.edu.
A 6-YEAR-OLD girl was diagnosed with stage IV anaplastic Wilms’ tumor. After an initial response, her tumor recurred in the abdomen (including liver) and lungs. Because she was in good condition otherwise, she was started on experimental chemotherapy after her parents were told that her chance of cure was less than 5%. The medical team recommended a simultaneous referral to the hospice service to help the family prepare for the possibility that the child would die. The family declined the hospice referral, citing concerns about the invasion of privacy in their home when home nursing visits were mentioned. After chemotherapy commenced, the doctors and social worker offered the parents their assistance in discussing the situation with the ill child and her 8-year-old sister. The parents responded, "We do not want the children told about this. Children should not have to deal with death. They should be free from that for as long as possible. We will answer what they ask, but we will not tell them what is happening or that our daughter is dying, and we do not want you to tell them, either." As the disease progressed, the parents agreed to a care conference with the medical and hospice/palliative care teams. This group assured the family that their wishes and concerns would be respected and then reviewed the role of the hospice team. The team asked for permission to visit the child at home and mentioned that Child Life staff would be part of these visits. Because of their strong connection at this time with the Child Life staff, the parents accepted the hospice referral. (Child Life specialists are Master’s level professionals who are trained to address the psychosocial needs of children at different developmental stages regarding medical care and hospitalization. Most children’s hospitals in the United States use these specialized workers.) Thereafter, the hospice team’s visits with the family became part of a routine, and the family’s trust grew to the point of allowing staff to spend time alone with the child in her room. Having care in the home allowed the family a greater feeling of control. The child’s disease continued to progress. During this time, the parents made minimal use of the prescribed opioid analgesic, stating that their child was comfortable and quiet. However, at a clinic visit the patient told the medical staff she was in pain. The team worked with the parents to increase the use of morphine. The child’s sister occasionally accompanied the patient to clinic visits, and it was observed that she was having severe eye-blinking and head-tilting tics. When this behavior was discussed with the parents, staff was informed that the sibling had been acting out in school for several weeks. It was explained that such behavior was not uncommon in siblings of very ill children. Staff again offered to assist the parents in discussing the medical situation with the children, but the parents declined, reiterating their strong desire not to tell their children. When asked how they were dealing with this tragic situation, the family openly said, "denial." Staff observed that the children were given more attention and less discipline by the parents. The patient confided in the hospice team that she was having nightmares; they seemed to be reflections of an unknown fear. Team members offered her tools such as imagery to manage her nightmares, after which they became less problematic. Although it seemed to staff that it would have been better to be straightforward with the child, the family system functioned to actively discourage this. As the lung metastases progressed, dyspnea became pronounced. The child was admitted to the hospital at her parents’ request so they would not have such difficult memories in the home. She died in the hospital with her parents present while receiving intravenous opioids to control dyspnea and abdominal pain. At the beginning of this final hospitalization, the child’s sister told the nursing staff that she was afraid the doctors were killing her sister. It was not until this point that Child Life staff received permission from the parents to talk with her. They encouraged her to ask questions and to put her worries in a "worry box." Her parents were very surprised when their daughter said she already knew that her sister was dying. The child was sent to relatives as her sister died; her parents told her about her sibling’s death the following day, with Child Life staff assisting over the telephone. The staff remained very involved with the sibling throughout the death and funeral. Although she seemed utterly bewildered at the funeral, she was able to accept the finality of it, as evidenced by her comment to the hospice nurse as they closed the coffin: "I will never forget what my sister looks like."
An 8-year-old boy with leukemia experienced a relapse 3 months after receiving a bone marrow transplant from his 6-year-old sister. His disease progressed quickly as he developed severe bone pain and a pericardial effusion. Although medical options to treat the relapsed leukemia were discussed, a referral to the hospice team was recommended and accepted by the parents. The staff offered to help the parents talk with the ill child and his 6-year-old sister about the medical situation and to help answer the children’s questions. The family was very open to this assistance, although the parents did not completely agree with each other on how much the ill child should be told. The patient was told that his disease was back and that no more chemotherapy was going to be used. He was assured by his parents and health care providers that his pain would be relieved, which was accomplished with intravenous morphine. When he was alone with his parents and sister, he asked whether he was going to die. This question had been anticipated and his parents had received advice about their response. He was answered honestly, and he was told that he was indeed going to die and that his parents would be with him to make sure he did not hurt. He was reassured of their love and of his safety. He was able to express both his fears and his love for his family. Over the next several days, with the help of his mom and Child Life staff, he made a storybook about his life. Child Life staff assisted the patient’s sister, who was able to use drawings and discussions to express her questions and fears. With the parents’ consent, the extended family was encouraged to ask questions and express concerns. Because the patient’s sibling spent a great deal of time with relatives, their comfort with the situation contributed to her ability to cope with her brother’s impending death. The patient died at home, with hospice support, 5 days after the relapse was diagnosed. His sister was present, and relatives cared for her needs as the parents tended to her brother. She was allowed to participate in funeral planning, as were her close cousins. These children were all encouraged to be involved in saying goodbye to the boy.
It is likely that most pediatric providers in the United States believe in the principle of telling children the truth about their illness and answering their questions honestly. Yet most also believe that the patients’ parents are the final arbiters of decisions, assent issues notwithstanding. These principles can come into conflict and, in situations involving the death of a child, present an ethical dilemma: should providers respect the parent’s wishes when the cost may be psychologic harm to the child? Several studies report that children (in Western cultures) appreciate open communication about their illness and prognosis.1–4 Additional research indicates the importance of preparing children for a sibling’s death, the ability of siblings to comprehend such information, and the fact that the bereavement period is eased if siblings receive such preparation.5–9 Pediatricians and other health care providers have a responsibility to offer assistance to parents as they work with their children to avert emotional and psychologic harm. If a parent of a newly diagnosed leukemia patient said, "I don’t think I can learn to care for the central line" (an indwelling catheter), then extra hours would be dedicated to teach this skill with the hope that the parent could develop confidence. Time and effort should likewise be dedicated to teach families the consequences of not preparing their children for medical outcomes that are inevitable. Home visits can often be helpful, because parents are on their own "turf" and may find such conversations safer than in a hospital or clinic. Strategies need to be developed by a multidisciplinary team to inform families of these complex psychologic issues in a culturally and individually sensitive way and to acknowledge parents as decision makers. Parental comfort with communicating to their children about disease progression and impending death was vastly different in these two families. In Family 2, the parents gave permission for their children to fully participate in the end stages of their son’s illness, funeral planning, and death. Their healthy child did not develop behavioral problems during the short time between her brother’s relapse and death. In contrast, the healthy sibling in Family 1 exhibited behavioral problems during her sister’s decline and informed her parents that she knew her sister was dying, even though they thought they had shielded her from this knowledge. The survivors in Family 2 seem to have fared better psychologically than those in Family 1. However, staff believed that given enough time and information, the parents of Family 1 might have been able to give their children permission to be involved in this last phase of their daughter’s life. In a curative paradigm, discussion about death may seem dichotomous to the pursuit of cure, particularly when this pursuit occurs in the lives of children. Although cure rates and mortality rates are regularly quoted to parents of children diagnosed with life-threatening diseases, such information should also be accompanied by a discussion of all possible outcomes of the disease, including death, and the ways the medical team can support the family. Unfortunately, this discussion is quite often delayed until death is imminent. How do we encourage children and parents to remain hopeful while preparing them for the possibility of a devastating loss? We can incorporate palliative care principles and discussions into the main fabric of routine health care delivery and gently encourage parents to observe how much their children understand about their illness. Because children know when they are dying and can sense the extraordinary stress of their parents and doctors when death is imminent, they may feel tremendous isolation if they are not given permission to talk openly about their illness and impending death.1,2 When given the opportunity to communicate, children can conquer their fears as well as express their love. They can, even given a short time, complete a task that fulfills a dream and leaves a legacy for their families.
We thank Kirsten Hedrick, Margaret Monson, and Peggy Tuthill for their dedication to the children and their families.
Financial support for this work was provided by the Pine Tree Apple Tennis Classic Oncology Research Fund, St Paul, MN.
1. Faulkner KW: Talking about death with a dying child. Am J Nurs 97:64–69, 1997 2. Whittam EH: Terminal care of the dying child. Cancer 71:3450–3462, 1993[CrossRef][Medline]
3. American Academy of Pediatrics: Child Life Programs: Committee on Hospital Care. Pediatrics 91:671–673, 1993 4. Masera G, Spinetta JJ, Jankovic M, et al: Guidelines for assistance to terminally ill children with cancer: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol 32:44–48, 1999[CrossRef][Medline] 5. Martinson IM, Campos RG: Adolescent bereavement: Long-term responses to a sibling’s death from cancer. J Adolesc Res 6:54–69, 1991[Abstract] 6. Lauer ME, Mulhern Rk, Bohne JB, et al: Children’s perceptions of their sibling’s death at home or hospital: The precursors of differential adjustment. Cancer Nurs 8:21–27, 1985[Medline] 7. Spinetta JJ, Jankovic M, Eden T, et al: Guidelines for assistance to siblings of children with cancer: A report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol 33:395–398, 1999[CrossRef][Medline] 8. Havermans T, Eiser C: Siblings of a child with cancer. Child Care Health Dev 20:309–322, 1994[CrossRef][Medline] 9. Davies B: Sibling bereavement: Research-based guidelines for nurses. Semin Oncol Nurs 9:107–113, 1993[CrossRef][Medline]
EDITORIAL COMMENTARYPeter M. Anderson, MD, PhD22 Pediatric Oncology, Mayo Clinic, Rochester, MN This article nicely illustrates the vast difference between two different approaches to "tell the children." Each has different results in terms of stress level and psychologic health of not only children but their siblings in dealing with a difficult situation, that being the death of a child from cancer. It seems the very style of scientific writing asks us as physicians to be rational—even when confronted with the hard facts of life and, unfortunately, death of children. This is especially hard to do with children, because we’ve become so close—not only as parents, but also as care providers. Pediatric oncologists and care staff often reach a point of psychologically accepting the death of a patient as inevitable. When such a point is reached before the parents and/or other members of the family reach this point, conflict can easily arise. If perceptions of the inevitability of death, however, are congruent, less conflict is apt to occur, as very nicely illustrated in the second of the two case vignettes. This article also very nicely shares comparison and contrast about honesty. Honesty is the best policy with children of all ages. This way, the reality of the situation, no matter how awful it is, can be shared in an open manner. In trying to protect children from knowledge about what’s happening, they often can become even more confused and overly concerned about things that are beyond control. Finally, it is wise as care providers to "share the burden"; these case vignettes illustrate how, in a modern multidisciplinary clinic with support from child family life, hospice, as well as pediatric oncology and nursing, many individuals can make a difference—no matter what the outcome. This is where the art of oncology becomes especially difficult but is extremely important. Patients who cannot be cured need our services as well!
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Copyright © 2003 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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FAMILY 1
FAMILY 2
