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© 2001 American Society for Clinical Oncology
The Power of SilenceByFrom the Palliative Care Service, The Children’s Hospital of Philadelphia, Philadelphia, PA. Address reprint requests to Bruce P. Himelstein, MD, Palliative Care Program, Children’s Hospital of Wisconsin, 9000 W Wisconsin Ave, Milwaukee, WI 53201; email: bhimelstein{at}chw.org "Jane" was a 7-year-old girl admitted to the Children’s Hospital of Philadelphia Palliative Care Service for treatment of symptoms related to refractory acute myeloid leukemia. This was her second admission in 2 weeks. She was being treated for progressive pneumonia, bacteremia, and severe abdominal and bone pain with antibiotics, antifungals, fluids, high-dose analgesics, and blood products. Jane was initially resistant to using self-administered pain medicines because she was afraid to go to sleep. Through her drawings, including a picture of herself as an angel in heaven, it was apparent to the treatment team that Jane was aware of her imminent death. With support from the entire palliative care and oncology team, her mother, "Terry," gradually reached the same awareness—Jane was dying. Terry could not bear the thought of Jane’s death at home, so she brought her to the hospital when we thought she might be close to dying. Terry was torn between her daughter’s desire to be at home and her own fear of what could happen there. At home she would have the burden of being the medical caregiver in addition to mothering her child as she faced death. Early in the admission, we held a meeting with Terry, attended by the palliative care team, her primary nurse for the day, and her primary oncologist. During this initial meeting, we presented the clinical information that Jane was very sick and would soon die. We presented options for her care to Terry. After presenting this information, the dialogue naturally came to a stop. Terry very quietly cried and then joined us in silence. During the next seemingly eternal 10 minutes, we each became acutely aware of every stain on the rug, the expressions and held-back tears on the faces of everyone in the room, the color of everyone’s shoes, the sound of the ventilation system, and the movement of breath in the air. The silence was heavy. Terry ended the silence by asking, "What would that be like?" Our silent presence allowed her the space and time to question, to struggle, to analyze the situation within herself, which gave her permission to ask a question that most parents never have the courage to ask. A few days later, we went to see Jane and her mother. Terry asked about taking Jane home again. We suggested to her that her current medical regimen was quite complex and would be very difficult to carry out at home. We also talked about her fears of death at home. We presented the option of simplifying her care and suggested that all of her current interventions were options and could be stopped. We asked her to consider these options and scheduled a meeting for later in the day with her entire treatment team. We huddled in a small conference room with Terry, the palliative care team, her primary nurse of the day, her resident physician, and her primary oncologist. We briefly reviewed for her again that Jane was dying and that all of the interventions currently being offered were optional. We discussed the answers to the question she had asked days before, "What would that be like?" After suggesting a comfort care plan to her, including discontinuation of everything except pain medication and platelet infusions to prevent bleeding, a heavy silence once again fell over the room. After 10 minutes, Terry spoke only two words to break the silence: "Just stop." After a minute or so of sobbing, she again fell silent with us. Thirty minutes passed. The overwhelming silence enveloped us all in sadness; the struggle to maintain it was monumental. The nurse quietly rubbed Terry’s shoulders. Every nuance of Terry’s breath was immediately in our consciousness. At the end of this eternity, Terry quietly asked if she could go back to Jane’s room. We thanked her for the privilege of sitting with her in silence, and we all shared with her our admiration for her courage in making such a difficult decision. Comfort medications only were provided. Jane died peacefully 3 days later. Silent presence is an empowering yet difficult skill to master. In reflecting on this experience with the care team, we all felt the enormous privilege of being able to participate in this unusual clinical and spiritual adventure in silence. Through the art of presence and nondoing, we were able to communicate with Terry and to provide her with the support and space she needed to make and verbalize her decisions.
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Copyright © 2001 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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